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This is to certify that the

thesis entitled
QUALITY OF LIFE IN FAMILIES WITH AUTISTIC
CHILDREN: A COMPARISON WITH FAMILIES
OF NON-HANDICAPPED CHILDREN

presented by
Mary McPhai] Gray
has been accepted towards fulfillment

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© 1980

MARY McPHAI L GRAY

All Rights Reserved

QUALITY OF LIFE IN FAMILIES WITH AUTISTIC
CHILDREN: A COMPARISON WITH FAMILIES
OF NON-HANDICAPPED CHILDREN

By
Mary McPhail Gray

A DISSERTATION

Submitted to
Michigan State University
- in partial fulfillment of the requirements
i for the degree of
l

DOCTOR OF PHILOSOPHY
Department of Family Ecology
1980

ABSTRACT

QUALITY OF LIFE IN FAMILIES WITH AUTISTIC
CHILDREN: A COMPARISON WITH FAMILIES
OF NON-HANDICAPPED CHILDREN

By
Mary McPhail Gray

Purposes of the study were to: (l) explore the effects of
autistic child on quality of life in families, (2) compare self-
reported affective evaluations of life by autism parents with evalua-
tions of life by parents of non-handicapped children,(3) identify
the resources which are the most powerful predictors of family life
evaluation for parents of autistic children in comparison to parents
of non-handicapped children, (4) identify the evaluations of people
and shared time resources which are the most powerful predictors of
parent evaluations of family life in autism families in comparison
to families with non-handicapped children, (5) investigate the dif-
ferences in patterns of affective evaluations of life and family life
in mothers of autistic children as compared with fathers,(d) describe
the differences in affective evaluations of life, family life and
selected resources by autism mothers who work for pay out of the home
compared with autism mothers who do not.

Data for the 22 autism families were collected in January and

February of 1980 on individual self-administered written questionnaires

 

Mary McPhail Gray

completed by men and women in their homes in the presence of the
researcher. Data for the 237 families of non-handicapped children
were collected in the winter of 1978 on the same self-administered
written questionnaires as part of the Quality of Life Research Pro-
ject of the Departments of Family and Child Sciences and Human Envi-
ronment and Design at Michigan State University. All families lived
in the same household with at least one school-aged child. The
autism sample was a volunteer group from a larger survey and repre-
sented autism families who were enough similar to those previously
described in the literature to allow meaningful comparisons of results.
The autism families and the families of non-handicapped children
showed strong demographic similarities except for a somewhat smaller
mean family size in the autism sample.

Respondents evaluated their overall quality of life and
family life by resources selected from Rettig, and by identified
people and shared time resources, utilizing a terrible-delighted
interval scale.

Results of Pearson product moment correlations and forward
stepwise regression analysis indicated that when evaluating family
life, autism women consistently substituted variables evaluating
children and shared time with children for variables evaluating
spouse and marriage. Autism men consistently responded in patterns
which were more similar to the parents of non-handicapped children.

For autism women, people and shared time resources accounted

for 52 percent of the variance in evaluation of family life; the

 

 

Mary McPhail Gray

Rettig resources accounted for only 42 percent of the variance in
evaluation of family life. For autism men, the Rettig resources
accounted for 82 percent of the variance in evaluation of family life
as compared to only 63 percent accounted for by the people and shared
time resources. The Rettig resources were more powerful predictors

of affective evaluations of family life for both men and women in
families with non-handicapped children than the people and shared time
resources.

In cross tabulations of husbands'and wives'evaluations of life,
family life, spouse, marriage and children, the autism couples showed
the highest agreement for evaluation of children, and the least agree-
ment on evaluation of marriage and life-as-a-whole. While the autism
parents' evaluations of their spouse were generally high, women do
not use this variables to evaluate their satisfaction with family life.
Family, for autism women, was more directly linked to life with
children than was true for autism men or men and women in families
with non-handicapped children.

When autism women were separated into employed and unemployed
samples, the employed women showed significantly higher evaluations
of overall life and satisfaction with sexual relationship than the

unemployed women.

 

DEDICATION

To
Ernest and Luella Gray
for providing me a
quality of life
which has enabled me

to Love and to Learn

ii

 

 

ACKNOWLEDGEMENTS

The quality of this research has been enhanced by a unique
group of individuals who supported me in a variety of professional
and personal ways. I have been enriched and moved by them all.

I acknowledge -

Dale for his love and his intense and brilliant challenges
of mind and spirit.

Elizabeth for her capacity to understand and know the complete
range of my brilliance and stupidity.

Sean for his watchful and honest reflection of who I am.

Morgan for his life woven into the life of this work.

My fellow students, especially Shirley Gogoleski and Kathryn
Rettig for their love, intense sharing and challenge to excellence.

My major professor Dr. Verna Hilderbrand who has through the
years of my Master's and Ph.D. work proven a true friend, a loyal and
compassionate guide, and a professional mentor.

My committee, Dr. Beatrice Paolucci, Dr. Margaret Bubolz and
Dr. Ronald Wolthius for their uniqueness, their inspiration, their
respect and support of me through an elongated student experience. I
aspire to their qualities of ethics, scholarship and humanness.

The college of Human Ecology at Michigan State University for

financial support through assistantships and Fellowships.

 

 

 

The first mothers--Donna, Evelyn and Florence who taught me
so much that I was blinded by the need to know more.

Cindy Jennings for support and skill "above and beyond" in
typing the manuscript.

Frank Jenkins for his skillful, caring and supportive consul-

tation around the statistical analysis.

iv

 

TABLE OF CONTENTS

Page

List of Tables .

Chapter

I. INTRODUCTION. . l
Statement of the Problem . . . . . . . 1
Need for the Study. . . . . . . . . . . 6
Conceptual Framework 9

Objectives. . . . . . . . . . . . . . ll
Assumptions . . . . . . . . . . . . . 13
Definitions . . . . . . . . . . . 13
Hypotheses and Questions . . . . . . . . . 15
Limitations . . . . . . . . . . . . . 19
11. REVIEW OF RELEVANT LITERATURE . . . . . . . . 21
Early Diagnostic History of Autism. . . . . . 21
Literature on Epidemiology and Parents . . . . 24
Parents and Socioeconomic Class. . . . . . . 31
Family Reactions to Child . . . . . . . . . 38
III. METHODOLOGY. . . . . . . . . . . . 62

Autism Sample Selection . . . . . . . . . 62
Autism Sample Description. . . . . . . . . 65
Oakland Sample Selection . . . . . . . . . 69
Oakland Sample Description . . . . . . . . 69

Data Collection . . . . . . . . . . . . 71
Instrumentation . . . . . . . . . . 72
Description of the Variables. . . . . . . . 73
Data Analysis. . . . . . . 79

Statistical Methods and Assumptions . . . . . 79

IV. FINDINGS . . . . . . . . . . . . . . . 90
Objective A. . . . . . . . . . . . . 90
Objective B. . . . . . . . . . . . . 92
Objective C. . . . . . . . . . . . . 97

Objective D. . . . . . . . . . . . . 113
Objective E. . . . . . . . . . 131
Summary of the Findings . . . . . . . . . 135

 

 

Chapter

V. LIMITATIONS, CONCLUSIONS, DUSCUSSION AND

IMPLICATIONS.

Limitations .

Conclusions .

Discussion

Implications. .

Beyond Hypotheses Testing

APPENDICES .
A. NSAC Definition of Autism.
B. Questionnaires . . .
C Demographic Tables .
D Cross Tabulation Tables
BIBLIOGRAPHY

vi

Page

141
141
144
147
152
155

160
161
167
214
236

246

 

Table

LIST OF TABLES

Questionnaire Items Used to Measure Variables Under
Study.

Descriptive Statistics for Means of Autism and Oak-
land Parents on Affective Evaluations of Satisfac-
tion with Family Life and People Resources

T-Tests of Means of Affective Evaluations of Selected
Domains and Resources for Women in Autism and Oakland
Group. . . .

T-Tests of Means of Affective Evaluations of Selected
Domains and Resources for Men in Autism and Oakland
Groups ‘ . .

Summary of Spousal Agreement for Life-As-A-Whole,
Family Life, Marriage, Spouse and Children in Oakland
and Autism Groups. . . . . . . . . .

Summary of Multiple Regression Analysis for the Pre-
diction of Affective Evaluation of Family Life by
Evaluation of Marriage and Resources Received, order
not specified for Women in Autism Group .

Summary of Multiple Regression Analysis for the Pre-
diction of Affective Evaluation of Family Life by
Evaluation of Marriage and Resources Received, order
not specified for Men in Autism Group . .

Summary of Multiple Regression Analysis for the Pre-
diction of Affective Evaluation of Family Life by
Evaluation of Satisfaction with People and Shared
Eime, order not specified for Women in the Oakland
roup. . . . . .

Summary of Multiple Regression Analysis for the Pre-
diction of Affective Evaluation of Family Life by
Evaluation of Satisfaction with People and Shared
Time, order not specified for Men in the Oakland
Group. . . . . . . . . . . .

vii

Page

76

93

96

98

101

104

106

108

Table Page

10 Summary of Multiple Regression Analysis for the Pre-
diction of Affective Evaluation of Family Life by
Evaluation of Satisfaction with People and Shared
Time, order not specified for Women in the Autism
Group. . . . . . . . . . . . . . . . . 109

11 Summary of Multiple Regression Analysis for the Pre-
diction of Affective Evaluation ofFamily Life by
Evaluation of Satisfaction with People and Shared
Time, order not specified for Men in the Autism
Group. . . . . . . . . . . . . .. . . . 110

12 Summary of Paired T-Tests for Affective Evaluations
of Selected People Resources by Mothers and Fathers
of Autistic Children. . . . . . . .. . . . . 114

13 Pearson Correlation Coefficients (r) for Evaluations
of Family Life by Satisfaction with Resources
Received for Men and Women in Autism and Oakland
Groups . . . . . . . . . . . . . . . . 116

14 Pearson Correlation Coefficients (r) for Evaluations
of Family Life by Satisfaction with Resources
Received for Women in Autism and Oakland Groups. . . 119

15 Pearson Correlation Coefficients (r) for Evaluations
of Family Life by Satisfaction with Resources
Received for Men in Autism and Oakland Groups . . . 121

16 Summary of Highest Pearson Correlation Coefficients
for Evaluations of Family Life by Satisfaction with
Resources Received for Women in Autism and Oakland
Groups . . . . . . . . . . . . . . . . 123

17 Summary of Highest Pearson Correlation Coefficients
for Evaluations of Family Life by Satisfaction with
Resources for Men in Autism and Oakland Groups . . . 124

18 Summary of Highest Pearson Correlation Coefficients
for Evaluations of Family Life by Satisfaction with
Resources Received for Men and Women in Autism Group . 125

19 Means of Evaluations of Selected Resources Received
by Men and Women in Autism and Oakland Groups . . . 127

20 Pearson Correlation Coefficients of Evaluations of
Family Life with Evaluations of Selected Resources
Received for Men and Women by Autism and Oakland
Groups . . . . . . . . . . . . . . . . 128

viii

 

 

Table Page

21 Paired T-Tests of Means of People and Shared Time
Resources for Men and Women in the Oakland Group. . . . 129

22 Paired T-Tests for Means of People and Shared Time
Resources for Men and Women in the Autism Group . . . . 130

23 Summary of T-Tests of Means of Affective Evaluations

of Life-As-A-Whole, Family Life, Satisfaction With

People, Shared Time, and Resources Received; Means

for Employed Women in Autism Group Higher than

Unemployed Women in Autism Group . . . . . . . . . 132
24 Summary of T-Tests of Means of Affective Evaluations

of Life-As-A-Whole, Family Life, Satisfaction With

People, Shared Time, and Resources Received; Means

for Unemployed Women in Autism Group Higher than

Employed Women in Autism Group. . . . . . . . . . 133

25 Summary Statistics for Men and Women in Autism Group
on Affective Evaluation of Independent Variables. . . . 136

C-1 Age of Autistic Child in Two Autism Groups. . . . . . 214

C-2 Presence of "Other Handicapping Conditions' in Two
Autism Groups . . . . . . . . . . . . . 214

C-3 Presence of Verbal Ability in Two Autism Groups . . . . 215
C-4 Number of Children in Families of Two Autism Groups. . . 215
C-5 Age of Mothers in Two Autism Groups . . . . . . . . 216
C-6 Ages of Fathers in Two Autism Groups. . . . . . . . 216

C-7 Distance from Nearest Relative in Miles for Two Autism
Groups. . . . . . . . . . . . . . . . . . 217

C-8 Selected Indices for Gray Autism Sample and DeMyer
Sample. . . . . . . . . . . . . . . . . . 218

C-9 Education and Socioeconomic Status of Gray Sample and
DeMyer Sample . . . . . . . . . . . . . . . 219

C-lD Age of Respondents - Oakland . . . . . . . . . . 220
C—11 Age of Respondents - Autism. . . . . . . . . . . 221
C-12 Race of Respondents . . . . . . . . . . . . . 222

ix

 

 

Table

C-13
C-14

C-16
C-17
C-18

C-22

C-23

C-24

C-25

0-1

0-3

0-4

Household Composition for Autism and Oakland Groups .

Number of Own or Adopted Children Living in House-
Hold for Autism and Oakland Groups. .

Number of People Living in Household for Autism and
Oakland Groups . . .

Age Range of Children Living in Household - Oakland .

Age Range of Children Living in Household - Autism

Ages of Children Listed as Not Living in the House-
Hold for Autism and Oakland Groups. .

Highest Level of Formal Education for Women in
Autism and Oakland Group . .

Highest Level of Formal Education for Men in Autism
and Oakland Group

Employment Status of Women in Autism and Oakland
Groups . . . . . . . . . .

Employment Status for Men in Autism and Oakland
Groups . . . . . . . . . . .

Types of Occupations Held by Women in Autism and
Oakland Groups . . . . . . . .

Types of Occupations Held by Men in Autism and
Oakland Groups . . . .

Total Family Income before Taxes for Autism and
Oakland Group. . . . . . . . . .

Cross Tabulations of Women's and Men's Affective

Evaluations of Life-As-A-Whole in the Oakland Group .

Cross Tabulations of Women's and Men's Affective
Evaluations of Life-As-A-thle in the Autism Group

Cross Tabulations of Women's and Men's Evaluations
of Family Life in the Oakland Group

Cross Tabulations of Women's and Men's Evaluations
of Family Life for Autism Group. . . .

X

Page

223

224

225
226
227

228

229

230

231

232

233

234

235

236

237

238

239

 

Table Page

D-5 Cross Tabulations of Women's and Men's Evaluations

of Marriage in the Oakland Group. . . . . . . 240
0-6 Cross Tabulations of Women's and Men's Evaluations

of Marriage in the Autism Group - . . - - - - 241
0-7 Cross Tabulations of Women's and Men's Evaluations

of Spouse in Oakland Group. . . . . . . . . 242
0-8 Cross Tabulations of Women's and Men's Evaluations

of Spouse in Autism Group . . . . . . . . . 243
0-9 Cross Tabulations by Women and Men of Evaluations of

Children in the Oakland Group. . . . . . . . 244

0-10 Cross Tabulations by Women and Men of Evaluations of
Children in the Autism Group . . . . . . . . 245

xi

INTRODUCTION

This study is a preliminary attempt to identify variables
which affect life quality as perceived by the parents of severely
handicapped children compared with parents of non-handicapped children.
The group of families with severely handicapped children all have

children who have been diagnosed "autistic."

Statement of the Problem

Currently, a proposal is before the Michigan State Department
of Education which would establish a separate diagnostic category
for autistic students in this State, define rules for programs for
autistic students, and establish teacher endorsement requirements
for teachers of the autistic. This marks the third time in the last
8 years that a concerted effort has been made by a coalition comprised
of parents and key service personnel to bring a proposal to the State
Board Level. On Wednesday, April 2, 1980, largely in response to
testimony heard from parents or their representatives attending the
meeting, the State Board moved to table the proposal so that members
could review the ''volumes" of documents presented on this "very tech-
nical issue." The vote to table passed in spite of articulate protests
from several board members who felt that the established legal process
for the promulgation of new public rules had been strictly adhered

to over the previous eighteen months and that this process (which

 

 

includes open public hearings) allowed ample opportunities for exten—
sive study and discussion among all relevant parties.

The decision to table the autism proposal was in marked con-
trast to the ameliorative, positive decision "theme" which appeared
to surround all previous special education requests on this day. The
response appeared to be reflective of the Board Members' concerns
regarding the parent testimony. In spite of extensive advocacy exper-
iences which have wrestled with realities of the political/economic
state power structures, the parents were unable to present a supportive
united statement to encourage board passage. Instead, they raised
questions regarding specific details of school schedules and urged
diagnostic "reductionism" which tended to illustrate a reactionary,
disorganized, and self-seeking lobbyist group.

This very prospect of more intensive service to autism has
once more brought public attention to a group of people who reflect
the intensive strains of parenting children who have been repeatedly
described as the "most puzzling" (Funneaux and Roberts, 1977) and
the most severely psychotic (Cohen, 1973; Graziano, 1974) of all
handicapped students. Life with autistic children has presented unique
family strains. Assaulted by twenty-five years of "blame etiology;"
professional ignorance, ambiguity, and controversy about diagnosis;
premature and ill-informed hopes for "cures;" and the virtual lack
of public school services, parents of autistic children have little
historical precedence for positive, reciprocal relationships with

public and private service systems. In addition, the specific

 

 

 

 

 

behavioral traits of autism present extreme stress on families by
the nature of the caretaking activities demanded and the constancy
of this role. DeMyer (1979), a clinical psychiatrist who has special-
ized in the treatment of autism for approximately twenty years, and
is herself the parent of an autistic child, comments that...."A11
parents experience severe stress in caring for an autistic child"
(p. xii). Koegel and Rincover (1977) comment that Rsome of the most
pressing problems reported by the parents of autistic children seem
to stem from having to watch their child continuously all of his waking
hours" (p. 125). DeMyer (1979) further states that this intensive
care of the autistic child does not "pay off" in a "normal" reciprocal
exchange sense, because "most, but not all cases, end tragically in
an adult life of partial or total dependence" (DeMyer, 1979 p. xii).
In other words, with an autistic child in the family the present is
a severe strain and the future may be no better. Parents who are
knowledgeable and assertive enough to be public advocates for their
children probably realize the angering tragedy of prognosis for their
children. They are confronting a macro-system which works largely
on an economic exchange model. When the discussion centers around
the costs of programs to autism and asks for a justification in terms
of "economic investment in human capital," parents are realistically
frightened that their child may not be a "sound investment" in that
utility value system.

Services to autism in Michigan are currently at a level higher
that in most states in the Union, but probably approximately half

to three-quarters of Michigan's autism population has not been clearly

 

identified and evaluated by professionals knowledgeable in this spe-
cialty. Given the low incidence of the disability1 and the splintered
nature of diagnostic services for children, more appropriate programs
will most likely be obtained only through a continued parent advocacy
movement. However, parents who live with the stress of an autistic
child can only sporadically apply their energies to public awareness]
advocacy efforts. While mandatory legislation has dictated that school
programming must be provided for this population, autism as a severe
psychosis has more traditionally been viewed as the responsibility

of the mental health/psychiatric community. It will be some time
before enough educators are trained to respond with an appropriate
service model to this group. In addition, the mandate is for service
to the child; previously if service were provided from mental health
there was a treatment bias toward including the parents and/or entire
family in treatment efforts. While the theories of etiology which
predominate in the mental health community (Kysar, 1968; Roth, 1970)
are antithetic to parents and current professional researchers in

the field, there was an attempt to treat "whole systems" around a
child. Public schools are truly in the business of service to students,
and special educators have no mandate to parents gxggpt to involve
them in decisions concerning their child's federally mandated "Indivi-
dual Education Plan." Since school districts are not hiring new
personnel to implement this considerably increased communication process,
it would appear that parents will obtain little opportunity for

1Incidence figures have varied from .02% to .078% with a general
acceptance of 4-5/10,000 (Lotter, 1966).

 

 

 

involvement with the schools about particularistic strains arising in
their family because of the autistic child. How will parents indicate
their concerns and desires? Who will be making decisions which facili-
tate or limit the possibilities of family maintenance, and responsive
re-creating? Parents have often found themselves needing to educate
and advocate when they need some appropriate support to maintain life
quality for themselves and their children.

Love (1970) reports that the incidence of diVorce in special
education families is twice the national average. In a family with
an autistic child, the strains would appear to be dramatically
heightened, yet very little is actually available in the research
literature about how families of the autistic cope with this stress
in their lives. There are autiobiographical accounts which provide
_awesome and dramatic stories of some autistic children and their
families, yet the writers of such books tend to represent unusual
energy-rich family systems which may be the exception and thus
inadequate as information sources for designing family services.
DeMyer (1979) comments that some parents of autistic children "falter
as individuals and marital partners and others appear to develop
increased strength" (p. xii). As special education services are
gradually increased to all severe handicaps, we have very little

2See for example: Copeland, James. For the Love of Ann,
Arrow Books, Ltd., 1973; Greenfield, Jose, A Child Called Noah. New
York: Warner Books, Inc., 1973; Park, Clara Claiborne, The Siege.

Boston: Little, Brown and Co., 1967; Wexler, Susan Stanhope. :flm;
Story of Sandy, New York: Bobs-Merrill Co., Inc. 1970. '

 

 

research data to assist in designing supportive services to a majority

of this population of families.

Need for the Study

 

Services to autistic children and families have been offered
through the public schools in Michigan only since 1973, when Wayne
County Intermediate School District and Kent County each began to
serve this population. While these programs have grown steadily,
without a mandated separate service category in the State and a speci-
fic program rule, it is likely that only the most disruptive children
or the children of the most angry parents are being served. Most
of the current program directors feel they are serving from one-fourth
to one-third of the autism population. It is to be expected, therefore,
that programs will be in the development/identification stages for
some time to come. Without adequate teacher training processes and
the high stress presented by these students, much administrative time
is devoted to staff training and supervision. In addition, the very
difficult process of developing an accurate diagnostic model, and
all of the system-system interactions required by low incidence cross-
district school programs, fall on the administrators. Programs with

3 have often seen this profession used almost entirely

social workers
for agency referrals, funding coordination and state/private institu-
tion relationships. Resources for a careful assessment of family

needs and interests are not available. As Eyman et a1. (1966) reports,

3To my knowledge, only four in the State: Grand Rapids,
Detroit, Muskegon, and Flint.

 

 

it is often the most assertive special education families who receive
service; in other words, in a self-selection process, those who feel
(for whatever complex of reasons) that they need a particular service,
seek it if they are skilled and confident enough to do so. School
personnel therefore are often responding to crisis calls from grief-
stricken, angry parents who have exhausted their own physical and
socio/emotional resources and need relief. In a current depressed
economic situation, family advocates are requesting expensive respite
care, vocational rehabilitation services, group homes, or institutional
care for individuals who appear severely handicapped. With a national
and state advocacy movement toward independent living and de-institu-
tionalization of the handicapped population, it is extremely difficult
to find public support for twenty-four hour care systems for autistic
children. The literature contains very few studies which attempt
to assess family system responses to these children. As Paluszny
(1979) says, "we do not yet know how this stress is affected by the
severity of the child's handicap, the age of the child, or the socio-
economic background of the parents. We do not know as yet all the
adaptive strategies and the formal and informal support systems that
make the difference between the parents who can cope and the parents
who are overwhelmed with the problems of caring for their autistic
child. We can, however, be sure that there is no single strategy,
no single pattern tht will fit all families well" (p. 147).

The increase in efforts to serve autistic children which has
occurred in the last five years represents a newly available centra—

'1ized population for study of these families. In the Garden City

 

 

(Wayne County) Autism program, there are 36 teachers, 36 aides, 2
separate buildings housing only autistic classrooms, and 180 students.
Leo Kanner saw only 150 autistic children over a clinical practice

of 20 years (Lotter, 1966) or approximately 7-8 per year. Much of
what is written about families of autistic children before 1975 con-
sists of clinical descriptions of parents and children already labeled
"severely disturbed," (Kanner, 1943; Eizenberg, 1957; Bettleheim,
1976; Polan, 1959; Roth, 1972). More recent writing by such parent/
professionals as John and Lorna Wing (1968) Bernard Rimland (1964)
Clara Park (1967) and Marian DeMyer (1979) have presented a more des-
criptive less psychoanalytic interpretation of realistic family acti-
vities. There are increasing accounts of attitudinal changes even

in "intervention trainers" who comment like Marcus, Lansing, Andrews,
and Schopler (1978) that "inappropriate childrearing practices are
best considered as a normal response to a peculiar and difficult child"
(p. 626). Kanner (1943) originally postulated that autism was an
"inborn defect of affective content" and felt there was support for

a biogenetic theory of etiology. But his position at an East Coast
University in the first United States Child Clinical Psychiatry practice,
probably skewed the population he was able to study. In spite of

his attempts to locate a broader selection of socioeconomic classes,
he claimed to observe a continued bias toward upper socioeconomic
classes among families of autistic children. In the 1970s, this con-
troversy still continues (see Lotter, 1967; Roth, 1972; and Schopler
et a1. 1979) but it has only been in the past five years that Michigan

 

9

programs (and those reported elsewhere) have begun to represent
greater ethnic and socioeconomic class integration. Thus it is
perhaps only in the coming decade that we can began to conduct family
research that more accurately reflects the rich variety of individual
system responses to the severe and chronic stress of an autistic
child. This research is conceived of as a preliminary step in the

process.

Conceptual Framework

 

Various researchers have conceptualized people's subjective
evaluations of life as providing critical information for the assess-
ment of a society's performance in meeting mankind's needs (Andrews,
1974; Campbell et a1., 1976; Foa and Foa, 1974; Rettig, 1980). As
social creatures, humans live significant portions of their lives
in the environments of families and other interactive systems of
work, friends, community, school etc. Family appears to be a highly
significant system for the explication of developmental processes
in each of its members. The identification of family membership
and the practices which become "normal" for that particular group
are powerful influences for the development of individuals. Campbell
et a1. (1976) and Andrews and Withey (1976) identified the importance
of family life to people's evaluations of their life as a whole.
Andrews and Withey (1976) suggest that people separate their lives
into "domains" or "places, things, activities and roles" which they
evaluate by "criteria" or values and personal judgments. Such

"things" as family and work, can be conceptualized as domains which

 

 

 

1

10

contribute to a person's evaluation of their satisfaction with life
totally. The theoretical contributions of Foa and Foa (1974) sug—
gest that people interact in these various domains to meet essential
needs through an exchange of resources which are identified as money,
goods, services, love, status and information. Rettig (1980) built
upon this exchange model and suggested that shared time among members
is a necessary condition for the exchange of resources in the inti-
mate environment of the family. The Foa and Foa model suggests

that these resources can be ordered hierarchically according to
particularistic-generalistic continuum. Those resources which are
more particularistic (love, services, status) tend to be highly
dependent for their value upon the individuals involved in the
exchange; hence family members frequently are involved in particular-
istic exchanges with each other. The more generalistic resources

of money, goods and services are more "universally valuable" and

are not as dependent upon the specific individuals involved in the
exchange. Family is a domain within which specific people are
involved in exchanging highly valued particularistic resources,

i.e. love, status and services. The degree of satisfaction with
these exchanges impacts on overall quality of life.

In families with autistic children, the severely handicapped
person presents resource needs which impact significantly on speci-
fic family members and/or their exchanges. The autistic person
is rarely a resource to the family system; she usually presents

demands for resources which must be provided by the family's store

 

 

 

 

11

of human and material resources. Families of autistic persons may
require an unusual abundance of resources to support the demands

of their handicapped child. Given the reciprocal nature of exchanges
within the family such resource demands from the autistic person
impact in complex ways throughout the system. As an identifiable
source of stress, autistic persons may be responsible for lowered
satisfaction with family life, or specific exchanges in family life.
This lowered satisfaction with family life has obvious implications
for parents' perceptions of their overall quality of life. If family
members are involved in exchanges with other systems external to

the family which provide them vital human and material resources,
they may be better able to cope with the needs of their handicapped
child. The specific choices made in response to those needs are

felt to be highly particularistic and dependent on each individual's
perception of their own well being as reflected in their satisfaction

with people, shared time, and resources exchanged.

Objectives

The objectives of this preliminary study encompass issues and
interests in the fields of family ecology, special education, psycho-
logy/psychiatry and political advocacy. It was the intention of this
work to provide directions for further important areas of research
which then might offer information useful in structuring services to
families with handicapped children.

Specifically, objectives of the study are as follows:

 

 

12

Obtain demographic information on a volunteer population
of parents of autistic children for comparison to
published information in the literature.

Compare the relationships between parent reporting of

overall evaluations of life, family life, marriage,

children, and spouse in families of autistic children
with families of non-handicapped children.

Explore the relationships between parent evaluations of

selected dimensions of family life in families with

autistic children and families of non-handicapped child-
ren.

C.l. Identify the resources which are the most powerful
predictors of family life evaluation for parents
of autistic children in comparison to parents of
non-handicapped children. »

C.2. Identify the evaluations of shared time and people
resources in families of autistic children which
are the strongest predictors of parent evaluations
of family life in comparison to families of non-
handicapped children.

Explore the relationships between evaluations of selected

dimensions of family life by fathers of autistic children

in comparison to mothers of autistic children.

Explore the evaluations of specific dimensions of family

life by mothers of autistic children who work for pay

out of the home and those who do not.

 

13

Assumptions

 

In the process of this study the following assumptions have

been made:

1. A family system attempts to allocate resources in a
manner which may support or limit the optimal develop-
ment of each family member.

2. Parents are able to reflect their evaluations of their
family and their lives by answering a questionnaire
which asks for quantification of evaluation with specific
resources.

3. When husbands and wives answer separate questionnaires
simultaneously these can be construed as two independent

cases .

Definitions

For purposes of this study, the following definitions are used:

family.--A system of interacting and interdependent persons

who share common resources, exhibit a theme, and have a commitment
over time. In this study specifically, all families consisted of
a male/father, female/mother and his/her and their children living

in one household.

Autistic Child.--A child enrolled in a segregated special
education program for autistic children in one of three separate
urban areas of Michigan selected for the study. In general, the
programs utilized a definition of autism made by the National Society

for Autistic Children (NSAC) (see Appendix).

 

 

 

14

Resources.--Objects, events, activities or human beings
that are available in the family environment and might function

to influence optimal development of its members.

Quality of Resources.--Subjective judgments (evaluations)

made by parents of the quality of their resources.

Particularistic Resources.--Those resources whose value
is influenced by the particular persons involved in exchanging them

and by their relationship.

Generalistic Resources.--Those resources which are valued
by their inherent qualities and not dependent for value on the persons

involved in the resource exchange.

Love Resources.--These particularistic resources which con-

 

tribute to a person's belief that she is loved/respected and involved

in a committed intimate relationship.

Service Resources.--Those resources which a developing person

 

receives as activities done with her needs for activity goal achieve-

ments in mind.

Information Resources.--Those resources which offer the
developing person facts, concepts, or ideas which affect her growth

and development.

 

 

 

 

15

Material Resources.--Goods or money which have a generalistic
exchange value but are provided to a particular family member for

need satisfaction.

Hypotheses and Questions
The hypotheses and questions developed from the research

objectives are as follows:

Hypotheses for Objective A:

H1. The sample of autistic families used in this study
is representative enough of the universe of autistic families
reported in the literature to permit meaningful inferential state-
ments about autistic families known to other researchers.

H2. The sample of autistic families used in this study
is similar enough to families in the Oakland Quality of Life Study

to permit meaningful comparisons of data.

Hypotheses for Objective 8:

H3. Parents of autistic children will report lower mean
scores of evaluations of family life, marriage, children, and spouse
than will parents of non-handicapped children.

H3a. Mothers of autistic children will report lower mean
scores of overall evaluation of life, family life, marriage, children,
and spouse than mothers of non-handicapped children.

H3b. Fathers of autistic children will report lower mean
scores of overall evaluations of life, family life, marriage, child-

ren, and spouse than will fathers of non-handicapped children.

16

H3c. Mothers and fathers of autistic children will show no
differences in the pattern of spouse agreement of evaluations of life-
as-a-whole, family life, marriage, spouse and children when compared

to mothers and fathers of non-handicapped children.

Hypotheses and Questions for Objective C:

Q. Do parents of autistic children show the same pattern
of resources as predictors of their evaluation of family life as do
parents of non-handicapped children? .

02. Do parents of autistic children show the same pattern
of shared time and people resources as predictors of their evaluation
of family life as do parents of non-handicapped children?

H4. In families with autistic children, the mothers' evalua-
tions of marriage do not contribute significantly to the prediction
of evaluation of family life.

H5. In families with autistic children, the mothers' evalua-
tions of love and affection experienced do not contribute signifi-
cantly to the prediction of evaluation of family life.

H6. In families with autistic children, the mothers' evalua-
tions of how comfortable it feels to be at home do not contribute
significantly to the predictions of evaluation of family life.

H7. In families with autistic children, the mothers' evalua-
tions of how openly and honestly feelings can be expressed do not
contribute significantly to the prediction of evaluations of family

life.

 

 

17

H8. In families with autistic children, the mothers' evalua-
tions of the amount of respect received do not contribute signifi-
cantly to the prediction of evaluations of family life.

H9. In families with autistic children, the fathers' evalua-
tions of marriage do not contribute significantly to the prediction
of evaluations of family life.

H10. In families with autistic children, the fathers' evalua-
tions of things done together do not contribute sjgnificantly to the
prediction of evaluations of family life.

H11. In families with autistic children, the fathers' evalua-
tions of how comfortable it feels to be at home do not contribute
significantly to the prediction of their evaluation of family life.

H12. In families with autistic children, the fathers' evalua-
tions of the sexual relationship do not contribute significantly to
the prediction of evaluation of family life.

H13. In families with autistic children, the fathers' evalua-
tions of love and affection received do not contribute significantly
to the prediction of evaluations of family life.

H14. In families with autistic children mothers' and fathers'
evaluations of marriage, contribute at the same level to their evalua-
tions of family life as those of mothers and fathers of non-handi-
capped children.

H15. In families with autistic children, mothers' and
fathers' evaluations of children contribute to the prediction of
evaluation of family life at the same level as mothers and fathers

of non-handicapped children.

 

 

18

H16. In families with autistic children, mothers' and
fathers' evaluations of spouse contribute to the prediction of
evaluations of family life at a level equal to that of mothers and
fathers of non-handicapped children.

H17. In families with autistic children, the mothers' and
fathers' evaluations of time spent with children contribute to the
prediction of evaluations of family life at the same levels as those
of mothers and fathers of non-handicapped children. 1

H18. In families with autistic children, the mothers' and
fathers' evaluations of time spent with spouse contribute to the
prediction of their evaluations of family life at a level equal to
that of mothers and fathers of non-handicapped children.

H19. In families with autistic children, the people and
shared time resources are stronger predictors of affective evalua-

tions of family life than are the identified Rettig resources.

Hypotheses for Objective D:

H20. In families with autistic children, mothers' evaluations
of overall life, family life, children, marriage, and spouse are
significantly lower than fathers' evaluations of these same dimensions.

H21. In families with autistic children, mothers' evaluations
of selected resources will form the same predictive pattern for their

evaluations of family life as do fathers'.

Hypothesis for Objective E:
H22. Mothers of autistic children who work for pay out of

the home show the same mean evaluations of selected resources

 

 

19

received in the family as mothers of autistic children who do not

work for pay out of the home.

Limitations

The families in this project were selected from an available
pool of one-hundred ten voluntary respondents to an initial College
of Education Survey in 1979. Their commonality with a universe of
families of the autistic population can only be inferred by a careful
review of available demographic information in the research litera-
ture (see Chapter Three).

Writers such as Seligman (1979) Graziano (1974) and Love
(1970) have described the stages of parent response/acceptance of
the realities of a handicapped child in the family. Although some
authors have suggested that this process is developmental (Love,
1970) others (Thurston, 1960; Roth, 1972) have described the inten-
sity and rapidity with which grief-stricken responses to the condi-
tion of having a severely handicapped child in the family can be
retrieved in interaction with professionals. Since Love (1970)
describes denial as a second stage of this process, it might be
expected that a parent in this stage of response would tend to "mask"
or "blunt" the effects of this autistic child on their family. Thus
the responses to the research questionnaire may contain very super-
ficial unrealistic evaluations of life in all areas. Because there
was no attempt made to assess the family's "stage of response" to
their autistic child, it must be assumed that the bias might be dis-

tributed across the age groupings of the families.

 

 

 

20

A methodological limitation is inherent in the data collec-
tion design. The researcher made appointments to meet with the fami-
lies of autistic children in their own homes and remain there while
each mother and father completed a questionnaire. The original
intention of this model, as opposed to the Oakland Quality of Life
Study wherein the questionnaires were left at the respondents' homes
for independent completion and then picked up by a research staff
member later, was to provide a check against collusion for a "research
wary" group and to offer a resource to the parents. The researcher
felt that observing and caring for the couple's autistic child would
provide more rapport and relaxation in the interview process so that
the parents would be able to respond more truthfully and thoughtfully.
In actuality, in only one home was the researcher encouraged to
interact with the child; he happened to be a high functioning,
unusually social child who had been "expecting you." In the other
homes, therefore, after an initial explanation and socializing pro-
cess, the researcher "busied" herself in note taking and reading

except for necessary item explanations.

 

REVIEW OF RELEVANT LITERATURE

Early Diagnostic History of Autism

In 1943, the first American child psychiatrist, Dr. Leo Kanner,
published a paper in which he described eleven children whose behavior
was so bizarre and so similar to one another's that he suggested a new
diagnostic category of “an autistic defect of affective content."
Utilization of the term "autistic" was unfortunate because of its
previous connotation advanced by Blueler in 1919 as one of the two
fundamental symptoms of schizophrenia. The term has for forty years
inaccurately suggested that autistic persons are essentially normal
organisms who have chosen to retreat from reality.

Between 1943 and 1964, much professional dialogue was devoted
to an appropriate choice of the "necessary and sufficient" criteria
for diagnosis (Bender, 1947; Eisenberg and Kanner, 1956; Creak, 1966;
Rutter et a1. 1967). In addition, beginning with Kanner's descrip-
tions of his original eleven families, a tendency was adopted to view
the syndrome as caused by the social/psychological environments of
its victims. In particular, parents of autistic children were des-
cribed as possessing certain personality traits which "caused" or
at least "contributed to" autism (Kanner, 1943, 1949; Eisenberg, 1957;
Bettleheim, 1967; Tustin, 1973; Parks, 1967).

As a result of this theory of etiology, the major treatment

of choice by leading professionals into the 1960s was that of

21

22

non-directive play therapy for autistic children and analysis for
parents. A whole body of literature has emerged in the last fifteen
years which chronicles parent social/psychological wounds as a

result of this theoretical position.4 In fact the founding of the
National Society of Autistic Children (NSAC) in 1967 occurred as a
consciousness-raising advocacy group which had heard its angry limit
of "blame etiology" and began to challenge the system with accusations
and alternative views.

When Rimland, a bio-chemist and father of an autistic girl,
gave in 1964 a cogent argument for investigating biological factors
in etiology, a landmark in research themes was made. The subsequent
effects on treatment of the consideration of a biogenetic cause were
clearly seen in the rising criticisms of Bettleheim's work advocating
"familyectomy" (1967) and the serious attention paid to Lovaas (1965)

and his utilization of behavior modification techniques to "re-train"

autistic children. Lovaas was influential in documenting the pre-
valence of severe mental impairment among much of the autism popula-
tion (Lovaas et a1., (1973) and reinforcing the "co-trainer" respon-
sibility of parents._

In the 1970s, autistic children have finally arrived in the
public schools. Public Law 94-142, passed in 1975, mandated that

4In particular see: Parks, Clara Claiborne "View from the
Couch". American Journal of Orthopsychiatry 1969, 43, 321-326; Green-
field, Josh .A_Child Called Noah. New York: Warner Books Inc., 1973;
Kysar, J. E. "The Two Camps in Child Psychiatry: A Report from a
Psychiatrist Faher of an Autistic and Retarded Child." ‘Amgrigan

Journal of Psychiatry. 1968, 125, 103; and Russell, Robert. An Act
of Loving. New York: Vanguard Press, 1967.

23

all children, regardless of handicapping condition, must be provided
with a free and appropriate public education beginning in the Fall
of 1977. In addition, all handicapped children are entitled to non-
discriminatory testing and to due process which involves parents in
decision-making systems.

In addition, in 1975, amendments to the Federal 1970 Develop-
mentally Disabled Services and Construction Act were passed which
included autism as a developmental disability. This legislation
assures parent participation in the State Developmental Disabilities
' Council which reviews plans for service, and it includes the autistic
in the search for alternative community placements for the handicapped
(Paluszny, 1979).

DeMyer (1979) summarized research on the unequivocal neonatal
findings, evidence of greater speech and learning problems in autistic
siblings and extended family members, and the higher percentage of
autism in pairs of monozygotic twins compared with fraternal twins.
Of striking evidence in twin studies, when the non-autistic twins
were compared across identical and fraternal twin pairs, 85% of the
non-autistic identical twins had some cognitive abnormality such as
speech delay while none of the non-autistic fraternal twins exhibited
such handicaps. Spence's (1976) review of twin research data caused
him to hypothesize that in some cases genetic factors alone are
necessary and sufficient to cause autism, in some, the sole cause
appears to be injury at birth, and the remainder seem to suggest a
genetic vulnerability combined with brain damage. Furthermore, the

specific mechanism causing autism would appear to be multifactoral

24

and involve an insult to the central nervous system. It has been
documented to occur three times as frequently in boys as in girls;
thirty percent of the lowest-functioning autistic children show
seizure disorders by adolescence (Schopler and Rutter, 1978).

One of the most difficult findings that has emerged through
experiences with treatment is that, as DeMyer (1980) comments, "autism
is notorious for its resistance to clinical intervention, especially
over the long run“ (p. xii). DeMyer's longitudinal research on one-
hundred twenty autistic children concluded that the best prognosti-
cator for an autistic child ingtill her performance on intelligence
tests in the early years. Rutter (1978) reported a similar finding
with longitudinal studies in England though he added the components
of communicative speech and symbolic play skills as yielding a three-
pronged predictive unity.

As we enter the 1980s, we have learned that autism is a life-
long disability which is probably the result of some as yet unidenti-
fied insult to the central nervous system, and that it remains mini-
mally impacted by past treatment efforts. Public schools must now
serve autistic students; but someone must first be taught to identify
them and ideally, train teachers to meet their needs. The role of
parents has thus far been largely one of mutual support and program

advocacy; new directions for parent research and service are needed.

Literature on Epidemiology and Parents
The literature dealing with parents of the autistic, tends

to divide itself into the following areas; attempts to link parent/

25

personality characteristics and functioning to etiology, search for
the bias of socioeconomic class, descriptions of personality-patterns
among parents, parent/child interaction patterns, and parent perfor-
mance as co-trainers of their children. Attempts at unbiased survey
and research designs have been few, many published reports involve
small numbers of families, and there are other significant methodo-

logical problems.

Epidemiology Studies

 

In the 1960s, for the first time, some controlled studies
began to identify incidence rates and useful diagnostic criteria for
autism. The Middlesex Survey (Lotter, 1966) investigated all 78,000
children aged 8, 9 or ten who lived in the country of Middlesex,
England and found a possible one-hundred thirty five cases of autism.
Extensive testing, interviews with teachers and mothers, behavioral
observations, and examination of medical records resulted in the
selection of fifteen cases of "Kanner's syndrome", seventeen with
"many autistic features," and twenty-two who were judged "not autis-
tic" but showed some behavior similar to autism. This study there-
fore yielded incidence figures of 2/10,000 of "pure" autistic, 2.5/
10,000 of "autistic-like" and 3.3/10,000 as "autistic-appearing."

Of interest to this work are the parent assessments made on
this very large sample. The parents of the "pure" autistic group
tended to be in the Registrar General's social class I or II, to have
professional training, and be superior in intelligence to the other
groups. The Lotter Study did not show any raised prevalence of

schizophrenia or other psychotic illness, though other form of mental

26

illnesses (neurotic patterns, crisis reactions, etc.) were more prev-
alent in the more "pure" autistic groups than in the less pure.

Treffert (1970) examined all case records for children 12
years and under seen in Wisconsin at thirty centers for mental health
treatment during the years 1962 and 1967. His incidence rate for
autism was 3.1/10,000--but he accepted only those children already
diagnosed as autistic. One-half of Lotter's Middlesex group had not
been previously diagnosed prior to the survey (Lotter, 1967) so
Treffert's case finding methods may have depressed his incidence level.
Treffert's autistic group showed an excess of college graduates among
fathers, and no abnormal prevalence of pregnancy or birth complications.
Both Treffert and Lotter found boys to out-number girls in autism
by a ration of 2.4-3 to l.

Brask (1970) conducted a survey of children aged 2 to fourteen
in the county of Aarhus in Denmark. She found an incidence level
almost the same as Lotter's, but did not explore the socioeconomic
class bias.

Extrapolating these incidence figures to the United States,
there should be approximately 100,000 autistic persons of all ages
in this country. In Michigan, there should be 4,000 of which approxi-
mately 2,000 are of school age. This represents an incidence rate
which is one-half that of deafness and equal to that of total blind-
ness. But in cities of 10,000 inhabitants when 4-5 autistic persons
Inight be spread across the age span and appear at a variety of levels
of handicapping severity, it is very difficult for them to be accurately

identified.

27

Parents and Psychogenesis

The implications of Kanner's (1943) reports of the parents
of his first eleven cases have been mentioned above. While he later
(Kanner, 1968) stated that "at no time have I pointed to the parents
as the primary, post natal sources of pathogenicity“ (p. 20) yet
the lucid clinical descriptions of parent behavior he wrote and the
unusual prevalence of higher socioeconomic class in his sample (90%
of his parents were in the highest professional class( Kanner and
Lesser, 1958) have made a deep impression on new students. From a
child and family development point of view, it is important to recog-
nize that in the 19305 when Kanner was first meeting and collecting
clinical histories on autistic children, there was prevalent a popular
belief that competent parents (certainly represented by Kanner‘s group)
should apply rather rigid externally structured parenting practices
to their children (Winch, 1970). Some workers subsequent
to Kanner (Bettleheim, 1967; Despert, 1951; Goldfarb, 1961; Rank,
1959: Ward, 1970 and Roth, 1972) have also implicated parents for
providing an environment where normal bonding did not occur.

This seductive theory received some initial refutation when
professionals,who were also parents (Rimland, 1964; Wing, 1960; DeMyer,
1975) began publishing scholarly works. The number of articulate
balanced presentations in autobiographical form by parents of autistic
children (Copeland, 1973; Parks, 1967; Kaufman, 1976) could previously
be discounted as "biased non-professional" pleas. It is difficult
to read these "parent" books however and not feel that they represent

a group of extremely strong, articulate and balanced personalities

28

whose descriptions of family efforts to help their autistic children
are challenging indictments of professional knowledge and practice.
The suggestions of the epidemiology studies mentioned above did not
support a psychogenetic theory of etiology, but some human problems
of causality, as Bronfenbrenner (1979) suggests can truly not be
"proven" by research. Therefore much responsibility for critical
reading and thoughtful data collection has rested on individual diag-
nostic and service personnel.

In a study of 33 couples with autistic children matched by
age of child, ordinal position in the family, number and sex of sib-
lings, race, sex, socioeconomic status and religion with 33 other
couples with non-handicapped children, a series of 9 semi-structured
interviews were conducted by DeMyer and her associates (DeMyer, 1979).
Attempts were made to elicit information on aspects of child develop-
ment (eating, sleeping, socialization, communication, play and toilet-
ing) as well as information about their personalities as individual
and marriage partners. In order to more fully explore the nature/nur-
ture argument of etiology, an additional group of parents of learning
disabled children was observed and interviewed regarding parenting
activities. Results showed that the autistic parents were much like
the normal parents in their infant acceptance, nurturing warmth, and
appropriate stimulation of the infant. In contrast, parents of the
learning disabled population put more performance pressure on their
infants, were less responsive to her crying, spent less time talking
1and singing to her and were judged to be "less warm" (DeMyer, 1979).

Furthermore, retrospective interviews with the parents showed no

29

differences between the autistic group and the normal group on attitudes
toward the pregnancy and feelings toward their neonates, findings

which DeMyer felt disproved a psychogenetic theory of autism, a la
Bettleheim (DeMyer, 1979).

Creak and Ini (1960) investigated the families of 100 autistic
children and making clinical judgments, did not think that the person-
alities or attitudes of those parents were particularly abnormal.

Rutter et al. (1971) compared the parents of high functioning autistic
children with parents whose children were equal in intelligence but
were diagnosed as having receptive "aphasia." They utilized structured
interviews and questionnaires, finding no differences on measures

of psychiatric illness, obsessionality, emotional warmth toward child,
enthusiasm and empathy. Rutter did note, however that half of the
members in each group had shown neurotic or depressive disorders,

a finding he attributed as reactive to caring for a handicapped child.

Rutter, Greenfield and Lockyer (1967) found that only 9 per-
cent of autistic children came from single parent families as compared
with 22 percent of children with other forms of psychiatric disorders.
Bender and Grugett (1956) found that "broken homes" and "poor emotional
climate" were less frequent in the backgrounds of yound schizophrenics
and autistic patients than in the histories of children with other
psychiatric problems. Furthermore, in a study of children exposed
to severe trauma from neglect, hospitalization, or institutionalization,
Rutter (1968) found no cases of autism.

Pittfield and Oppenhein (1964) compared mothers of 100 autistic,

100 normal and 100 Down's Syndrome children by means of a questionnaire

30

to measure attitudes toward child rearing. The mother's of the autis-
tic group were felt to be “more indulgent" and "more uncertain in
their attitude," differences which the authors felt represented child
differences rather than characteristics of mothers. Ferster (1961)
wrote a theoretical paper postulating parent reactions which he pre—
dicted would cause autistic behaviors, with no effort at observation
or controlled research. His comments that autistic children do not
develop useful speech because of parent inattentiveness have been
disproven by mounting evidence of abnormal pre-linguistic behavior

in autistic children (Rutter, et a1. 1971; Wing, 1971).

Tinbergen and Tinbergen (1972) on the basis of their ethologi-
cal work, suggest that over-arousal resulting from chronic confusion
and fear not normally abated by parent interpretation and support,
is the cause of autism. By its emphasis on interactive microsystems,
the theory is intriguingly descriptive, but does not appear to help
explain why some children normally are easily reassured and comforted,
while autistic children appear not to be.

Schopler (1978) reviewed approximately 100 studies linking
autism and schizophrenia to parent pathology and declared them heavily
time bound--mostly published prior to 1965 and containing research
questions couched in the prevailing psychoanalytic theory of the times.

In summary, it appears impossible to "prove" that parents
do not cause autism, but writers in the field now echo DeMyer's (1979)
comment that "parents do not 'cause' autism any more than they cause
well-marked neurological conditions such as Down's Syndrome," or

Paluszny's (1979) remark that "there is so much evidence against the

 

 

 

31

view that autism is a primarily psychogenic disorder that it would
not seem worthwhile to investigate it further" (48).

A note should be made however, that while researchers of the
seventies have largely refuted this view on etiology, many families
have met professionals for whom "these findings may be ignored in
clinical practice", to quote DeMyer (1979). Kysar (1968), a psychia-
trist who is the father of an autistic boy, was moved to write elo-
quently of the severe depression which occurred in his wife and the
great strain which marked their marital relationship while he, even
though professionally "knowing better" attempted to cooperate with
a group of psychogenesists who held out hopes for cures to his wife
and boy. Parks writes in "View From the Couch" (1968) that it took
great self determination and anger to discount all the accusatory
messages of professionals in "helping" roles. Warren (1978) writes
of "A Society That is Going to Kill Your Children" and Robert Russell
(1967) killed his son and went to jail for homicide rather than see
him live with inadequate treatment and no hope of improvement. These
stories have been very eloquently expressed and certainly strike a
fiercely defensive and protective memory link in almost any parent
of an autistic child. Such knowledge should form part of the "infor-
mation resources" available to professionals who attempt interventions

with parents of older autistic children, in particular.

Parents and Socioeconomic Class
The intensive reactions surrounding the suggestion that autism

is a disability found most often in the upper socioeconomic classes,

32

probably reflects the concern about this correlational evidence being
used to make causative arguments for the psychogenesis of autism.
The research in this area suffers because of a recurrent combining
of the diagnostic categories of autism and schizophrenia and a con-
fusion about how to diagnose autism alone (Schopler, 1978).

Subsequent work in epidemiology and in clinical evaluations
of parents have reiterated this socioeconomic bias when parents of
the autistic are compared with parents of the normal population and
parents of other child psychiatric patients (Bender and Grugett, 1956;
Lotter, 1967; Rutter and Lockyer, 1967; Treffert, 1970). These same
studies did show however that these differences are only relative,
that is there are autistic children from all socioeconomic classes
and from parents of all levels of intelligence, even though propor-
tionately more parents come from intellectually and socially advantaged
sections of the population (Cantwell et a1., 1978).

A major study which did not support this bias was one by
Ritvo et a1. (1971), which compared seventy-four hospitalized autistic
children with 74 non-autistic hospitalized psychotic children. It
is suggested by Cantwell et a1. (1978) that this study included a
broader definition of autism which would predictably include a greater
severely retarded group and hypothetically, a more varied family popula-
tion. DeMyer's (1979) data on one-hundred twenty autistic children
included a large sample of middle socioeconomic class families and
very few in the low-income group. DeMyer (1979) suggested that refer-

ral services are not as readily available to low-income rural families

33

and remarked that their service area (the State of Indiana) included
several low-income sub-culture groups who reject professional services
of all kinds.

Schopler et a1. (1979) compared approximately 12 studies which
supported the higher socioeconomic bias with eight studies that did
not and presented an exploratory model for testing. Seven criterion
which were thought to operate in a selection bias toward higher socio-
economic class (age at onset, age of treatment admission, normal
cognitive potential, complexity of rituals, distance traveled for
treatment, availability of services and detailed child history) were
selected for discriminate function analysis of 264 cases in North
Carolina. Results showed that four of these criterion were biased
toward higher socioeconomic classes. The authors suggest that these
biases have been operating since Kanner's early work at Johns Hopkins
and probably have compounded our diagnostic skills toward a social
class bias. More realistic programming for autistic students in com-
pliance with the federal mandates will need more sensitive screening
and identification. In all likelihood, this bias has impacted upon
chosen school/home interaction systems for a number of years.

Research on Parent Personality
and Family Interaction Factors

From Kanner's (1943) earliest descriptions of parents of autis-
tic children, other authors have contributed lists of specific persona-
lity characteristics of this group. Thus they have been described
as formal introverted and obsessive (Rank, 1955; Eisenberg, 1957)

overprotective, symbiotic, and indecisive (Goldfarb, 1961; Meyers and

34

Goldfarb, 1961; Rank, 1955). However, Creak and Ini (1960) represent
another group of researchers who have not found these differences.

Bene (1958) used the Rorschach to compare mothers of children
with "primary" (early onset Kanner's Syndrome) versus "secondary"
autism. Results indicated that mothers of the primary group showed
more removal in social/emotional relationships than mothers of child-
ren with secondary autism. It is noteworthy that these results which
were interpreted to reveal maternal personality deviance--might more
adequately be interpreted from an interactional viewpoint to illustrate
the result of caring for an extremely withdrawn handicapped child
whose disability was evident within her first year of life.

Three separate studies of parents of autistic children utiliz-
ing the Eyseneck Personality Inventory (Kolrin et a1., 1971; Netley
et a1., 1975; and Cantwell et a1., 1977) showed no differences on
exroversion/neurotocism scales when compared to parents of normal
children. The MMPI has been utilized by Kolrin et a1. (1971) and
McAdoo (1978) with parents of autistic children and revealed no abnormal
pattern of neurotic tendencies. Gonzales et a1. (1977) compared
parents of autistic, deaf, and retarded children and found parents
of the autistic to be somewhat more empathetic and more sociable.
McAdoo (1978) found mothers of autistic children to have more positive
self images than either mothers of non-autistic psychiatric clients,
or adult female psychiatric clients.

Netley et al. (1975) used a thought disorder test to compare

parents of autistic to parents of psychotic, non-autistic children.

35

While all seven fathers showed no differences, five of the seven
mothers of the autistic showed abnormal scores compared with

only five of the nineteen mothers of non-autistic psychotic child-

ren. A replication attempt by Lennox et a1. (1977) did not find these
results; autistic parents most closely resembled parents of normal
children. In their discussion of such findings, Cantwell et a1. (1978)
make repeated references to the necessity of separating autism from
schizophrenia in the diagnostic categories of the children, and the
variance in diagnostic criteria seen between Europe and the United
States.

Byassee and Murrell (1975) attempted to assess elements of
family functioning with normal families, autistic families, and fami-
lies of an emotionally disturbed child, utilizing the Ferreira and
Winter Unrevealed Differences Task. No differences were found between
families of the normal and the autistic children; families with the
emotionally disturbed child showed less spontaneous spouse agreement.

In an ingenious study by Gardner (1977) a systematic detailed
study was made of mothers interacting with both their autistic child
and then with someone else's normal child and autistic child. What
Garnder found was that mothers spoke more to autistic children, but
used shorter utterances, more questions, more commands, and more verbal
rewards and punishments. Furthermore, the mothers of the autistic
children tended to be less "active“ with either normal or autistic
children. Mothers of normal children elicited more cooperative behavior,

spoke more, asked more questions, made more commands and created a

36

different parent role. Gardner concluded that the characteristics
of the autistic children elicited different parent behavior.

In other interactive research, this time based in the child's
own home, Cantwell et a1. (1977) made detailed descriptions of a
child's "standard day" by classifying interactions as concentrated,
continuous, available, or available--not used, ianamilies of autistic
and dysphasic children. The two groups did not differ significantly
on any of the degrees of intensity of interaction, or on the relative
patterns with fathers versus mothers. However, there was a sizable
difference for peer/sibling interactions; dysphasic children having
much greater interaction with other children.

Furthermore, Cantwell et a1. (1978) elicited parent interview
data on the frequency of specific activities the children might con-
sider pleasurable. Findings showed that fathers of the autistic child-
ren spent twice as much time playing with their children as did
fathers of the dysphasic group. It might appear that with autistic
children's severe social relatedness problems, it is intrusive
(largely boisterous and rough housing) play which attempts to pick
up a "normative activity" slack. Then in a series of observations
of family interactions within each group, the only significant dif-
ference between the dysphasic and autistic group was tht the fathers
of the autistic children were more consistent in emotional related-
ness than fathers of the dysphasic children (Cantwell et al. 1977).
Child/mother interaction patterns in the homes were observed, taped
and analyzed for character and affective qualities. In a complex series

of linguistic and affective analyses, the only differences seen were

37

that mothers of autistic children made more affectionate remarks to
their children and used significantly more positive and less neutral
tones. One might believe that these are "compensatory patterns" due
to the greater severity of the autistic handicap, or the historical
suspicions of professionals concerning autistic parents; but this
finding is remarkable as a statement of strength in the face of a
stressful parenting task. Of importance to further work in this area
is Howlin's (1973) finding that parent/child interactions in clinic
settings are different from those in the homes of the autistic popula-
tion. This is in keeping with results found in other population
groups (Nerlove, et a1, 1978) and supports the importance of assessing
behavior from an ecological perspective.

Overall, it would appear that repeated efforts to attach a
static-clinical model of psychiatric abnormalities to parents of
autistic children have proven futile and inappropriate. In addition,
preliminary available information would suggest a lower divorce rate
and a more positive child/parent interaction pattern in the families
of the autistic.

In the repeated efforts at “diagnostic" research, one is
struck by the amount of literature which has been generated by
professionals viewing the autistic parent as client/object in a
service relationship. It would appear that a significant number of
professional/parent interaction hours have been spent attempting to
categorize and describe these parents in some manner which is useful
to the psychiatrically-oriented professional community. It would

seem that parents of the autistic have "done their time" under the

38

microscope of "psychiatric" research. Furthermore, there is a clear
absence of sensitivity and/or interest in family theory--including

the seemingly obvious areas of family functioning, family development,
family resources, family satisfaction, family stability etc. It
would seem that when autistic children are first seen as deviant,
families struggle to obtain services, or at least supportive responses,
from professionals who are trained to suspect, identify and treat
"deviance." When research has been generated from this "pathological”
world view, it has been difficult to understand how the parents

of autistic children truly evaluate and design their lives on a

daily basis. The direction toward dynamic ecological research with

an appreciation for diversity seems imperative.

Familngeaction to Child

 

In the past fifteen years; information in the research litera-
ture has begun to turn from attempts to document certain personality
characteristics of parents of autistic children to limited assess-
ments of family reaction to the handicapped child, or to a specific
decision event (for example, the considerations surrounding the
institutionalization of the child). While these are still admittedly
static research designs, they do nevertheless appear more useful
in identifying actual functioning of families, particularly with
regards to certain characteristics being important for effective
family functioning. To date, however, very few of these attempts

have specifically dealt with autistic children and their families.

39

Reactions in Families with
Autistic Children

Holroyd et a1. (1975) reviewed the literature in the field
and declared that there has been no systematic study of the effects
of an autistic child on the family. Subsequently these investigators
studied twenty-nine husband-wife pairs who had an autistic child
and completed parent interviews and a 285 item true/false "Family
Problems Questionnaire" comprised of fifteen separate scales which
clustered as "parent problems", "family problems" and child problems.”
The sample included families across socioeconomic classes, and was
divided into two groups; those who had institutionalized their autis-
tic child and those whose child remained at home. Two social workers
did the parent interviews and made clinical judgments about the
relative amount of stress a family exhibited. The social workers
felt that fifty percent of the families fell into a "moderate stress”
range, while one quarter were "high stress" and one quarter "low
stress." Criteria for these judgments were made by noting the
presence of financial problems, parent use of tranquilizers, sibling
school problems and "deviant social/emotional behaviors" in the
present family functioning. Results of the analysis showed that
the severity of the autistic child's impairment did not differen-
tiate between high and low stress families. In addition, fathers
answers on the questionnaire did not differentiate between the two
groups. However, mothers' questionnaires showed that the following
"areas" (a combination of individual items which formed one scale)

differentiated between the two groups:

4o

1. Lack of social support
Pessimism
Lack of family integration

Limits on family opportunities

0'1th

Financial problems

In the low stress families (5) all fathers completed the question-
naire; in the high stress families, only one out of four returned
it. The mothers of the institutionalized children differed from
the mothers of the home-care autistic children in the higher report-
ing of the following problems (by priority):

1. Parent pessimism

2. Child's physical incapacities

3. Child's difficult personality characteristics (screaming,

hyperactivity, running away, etc.).

Fathers' of the institutionalized children reported a higher
number of the following (by priority) than did fathers of the home-
care children:

1. Child's physical incapacity

2. Child's occupational limitations

3. Child's difficult personality characteristics.

While not statistically significant the authors reported a trend
toward older families experiencing more stress, evident only on

the "Financial Problems" Scale. There was a trend for the social
workers to believe that young autistic children interferred more

in family functioning, but this trend was not substantiated by the

41

family reports. This interpretation may have been an artifact of
clinical judgments because young families are more child centered.

To test some of these relationships further, Holroyd et a1.
(1976) gave the same questionnaire to three groups of mothers:
twenty-two mothers of autistic children, twenty-two mothers of Down's
Syndrome children, and thirty-two mothers of psychiatric out-patient
clients. Again there was an attempt to obtain data from fathers,
but so few completed the questionnaires that they were not analyzed.
The mothers' responses showed that the autism group reported more
problems in all areas except financial problems. One particularly
problematic area was the difference between parents' expectations
of their autistic child for self-help skills and independence and
the child's actual achievement. This could be either measuring
inappropriate parent expectations or the autistic child's great
unevenness in skill development. Since most scale items enmeshed
child variables with parent attitude variables, the authors urged
that further work is needed to ponder the effects of socioeconomic
class, age of child, and severity of the disability. They felt
that the mothers of autistic children exhibited elevated scores
on “negative attitudes toward the child" but interpreted this finding
as a typical parent response to a class of very difficult children.
The mothers of autistic children were statistically significantly
higher on a measure of the "occupational limitations of the child"
as compared with the other two groups.

In an effort to look at effects on parents of having an

.autistic child, Wolf and Morris (1971) compared parents of autistic

42

children with parents of schizophrenic children. The authors found
both groups of marital pairs were in general agreement on the
behavioral traits of their child, that fathers of autistic children
had MMPI profiles which were not statistically significantly corre-
lated with the profiles of the fathers of schizophrenic children,
but the mothers' scores for both groups showed a positive correlation
of .67-.76. Again the authors felt that these results showed "maternal
relations entail more involved exposure to the stressful child"
(p. 160).

This differential effect on mothers was also found by DeMyer
(1979) in her study of thirty-three families of autistic children
matched with families of normal children by age and sex of the
probands in each family. DeMyer's work was not a dynamic research
study, but was an interview design in which a series of open-ended
questions were posed to the husbands and wives separately, whose
answers were taped and later analyzed by other coders. Repeated
mention is made of the guilt that is felt by the mothers (66% of
the autism group) and the self-doubts about their mothering ability.
Increased psychological and physical tension was mentioned or alluded
to by one or both of each member of the autism couples. DeMyer
states that it was extremely rare to'hear any overt expression of
anger toward the autistic child, though a few mothers reported
being able to express anger at a particular behavior of the child's
and then felt better afterwards. One-third of the autistic mothers

had troublesome depressive symptoms (by clinical judgments) but

43

did not become dysfunctional in a "major way." One nine percent
of the normal mothers were judged to have symptoms of depression.

In open-ended questions to both autistic and normal parents
about the worst/best points in "your own behavior as a parent,"
both groups (seventy percent) admired open expressions of affection
and love for the children. Fathers admired mother's traits which
facilitated smooth mother-child interaction and mothers admired
fathers' traits which led to good modeling, teaching, discipline,
and participation in the children's activities.

The most admired traits for the marital role tended to be
expressions of affection, listening and talking to the spouse, and
being a "good parent." DeMyer's associates in the study felt that
parents in both groups were better prepared and less defensive in
talking about each other's parenting role, as opposed to spouse
role. The suggestion was that "many did not understand with any
depth the nature of their relationship with their spouse" (p. 159).
The professional orientation of the research group and the interview
model may have made this an artificial finding, based on client/
professional differences in perception about the appropriate activi—
ties for this study was on parents' relationships with their children,
parents might object to disclosure in an area they did not feel
had direct legitimate relevance to their parenting roles.

Raters did not feel there were significant differences between
the autistic and the normal parents in an evaluation of marital

happiness, though they felt there tended to be more "extremely happy"

44

or "happy“ marriages among the normal families. The researchers
rated the autism marriages as follows: 36% extremely happy or happy,
39% bored (unhappy-happy), and 29% unhappy or very unhappy. Among
the normal families, it was felt that 42% were extremely happy or
happy, 39% were bored, and 18% were unhappy or very unhappy.

In discussions with parents who were reflecting enough dis-
tress to consider divorce, 27% of the autism families cited "child's
problems" as the reason for their consideration, while none of the
families of normal children gave this as a reason for divorce con-
sideration. Obviously, raters judged the problems of the autistic
child to create stress in the marriages.

In attempts to elicit information about the degree of support
the spouses offered each other in the care of the autistic children,
the authors stated that almost all of the mothers were full time
housewives and experienced the major responsibility for child care.
"Moral support" was extremely important to these mothers and their
most frequent complaint about their husbands was a lack of adequate
support. While 33% of the mothers of autistic children felt their
husbands shared their burden, 27% of the mothers felt an acute lack
of support from their spouse. The remaining one third were reflec-
tive of felt needs for more support, though not yet at the acute
stage.

While the differences were not significant, parents of normal
children tended to have better sexual adjustment than parents of
the autistic. The DeMyer groups felt that they observed a clear

difference in the arousal systems and integrative function of sex

45

for men and women, particularly in the autism group. Husbands tended
to desire the same level of sexual activity as they enjoyed prior

to their problems with the autistic child. They saw sexual activity
as a regenerative expression of intimacy. Mothers tended to feel
stressed by the care of the autistic child in a manner that reduced
their interest in sexual activity; they saw sexuality as a dependent
variable, whereas the husbands seemed to assign it an independent
variable status. These findings have been reported elsewhere in

the literature of sexual admustment and satisfaction (Reiss and
Miller, 1979).

The DeMyer group reported that problems with housekeeping,
finances and family outings were significantly more serious in the
marriages with autistic children than in the marriages with normal
children. In addition, mothers of autistic children spent more
time "cleaning up" and one-third of their husbands (as contrasted
with 15% of the normal fathers) reported dissatisfaction with their
spouse's housekeeping standards. DeMyer provides two eloquent quotes
which interpret requests that the autistic marital partners seemed
to be making of each other.

"When all the verbiage was cleared away, mothers seemed
to be asking of fathers:

'Please support me in trying to do the best I can with this
trying child. Tell me I'm doing a good job. Let me cry on
your shoulder, listen to my observations about our child, go
with me to see the doctors, don't retreat from us. Take us
out for some fun even though you are embarrassed by our child
in public. Don't criticize me, but help me.‘

In turn, fathers seemed to be asking of mothers:

46

'I'm trying to do the best I can to earn a living and to
understand what's going on, but I understand our autistic child
even less than you do and I'm uncomfortable because of all your
painful emotions. Society has taught me that it is not brave
to cry and you do a lot of it. One of the reasons I married
you was because you were laughing and joking and affectionate.
You're not that way anymore and you are immersed with the problems
of one child. Let me have some fun alone even if you yourself
can't get away from home or your thoughts enough to have your
own fun'" (p. 169).

From this quote it is apparent that research is needed to
ascertain how accurate this description of marital impasse in families
of the autistic is, and how to facilitate the buildings of resources
in these families so that their roles with their children and each
other can be more growth producing.

Family Reactions to Other
Handicapped Children

In 1965, Farber and Ryckman introduced an extensive review
of the literature on the effects a severely mentally retarded child
had on a family by stating that "research on family relationships
with the families of the severely mentally impaired has been under-
taken in most instances not so much to document the presence of
problems, but to indicate more precisely the kinds of problems which
arise" (p. 1). This apriori reasoning has often yielded descriptive
research which is of a static nature and which often assumes content
by its theoretical bias, but does not offer understanding of actual
family functioning: much writing is of a clinical nature with
very little empirical data. Farber and Ryckman reviewed studies

which involved families whose children functioned at the measured

IQ level of 50 or below; in special education terminology these

47

are the trainable, severely mentally impaired, and multiply impaired

populations.

Since sixty percent of autistic children have been

found to function at these levels, this review seems appropriate

for purposes of this study. Farber and Ryckman gleaned from the

literature support for the following being important independent

variables for predicting the "family effect" of a severely handi-

capped child:

1.

Family member's role.--Mothers are affected differently

 

than fathers or siblings. Love (1970) reviewed research
that suggested that fathers' acceptance or rejection

of the handicapped child showed a .83 positive correla-
tion with the child's acceptance or rejectance from

the entire family. The mother's acceptance/rejection
was correlated at only .09. The authors' interpretation
of these effects were that fathers set an affective

tone for the family and mothers were better able to
conceal their evaluations.

Sex of the handicapped child.--It appears that fathers
are more negatively impacted if the handicapped child

is a boy and mothers are most impacted when the child

is female. However, this effect appears age-linked

or developmental. Love (1970) found that families are
more willing to institutionalize a male child than a
female child.

Age of the handicapped child.--Families appear to be

more negatively affected by a handicapped male child

48

as the child becomes older. The authors felt that males
created more social problems for families. It may,
however be that these are actually problems in "role
failure" described by Goode (1971). Families may have
higher performance expectations for males; the nurturing
of a female handicapped child may be a more acceptable
social role assignment. In addition, there appeared

to be a tendency for families to over-rate the perfor—
mance of a younger child more than an older child. The
authors suggested that the age/performance disparities
are much clearer for older children, and that there

has been a longer time for "adjustment" and recognition
of the extent of the handicap by parents of older child-
ren.

Socioeconomic class of the family.--The reviewers found
different patterns of family reactions linked with socio-
economic class. In higher educated families, there
appeared to be higher expectations for children and

thus greater distress and despair over inadequate per-
formance. Fathers appeared to be dominant in decisions
to institutionalize a handicapped child in higher socio-
economic families for reasons relating to job mobility,
community status, and exosystem relationships. In lower
socioeconomic classes, mothers appeared to be dominant
in decisions to institutionalize a child with a rationale

based much more on the immediate problems of nuclear

49

family functioning. Research also suggested that a
predominant effect on the family of having a handicapped
child was a reduction for all members in exosystems--
informal social contacts, group memberships, and frequency
of shopping. These effects may be felt most negatively
in a higher socioeconomic family. Fleming (1973) felt
that a handicapped child is less of a threat to a family
with few resources already. Reviewing literature on
values and socioeconomic class, Fleming suggested that
family problems arise when the child deviates so greatly
that the values held by the parents are felt to be
threatened.

Family form.--Research with handicapped children appears

 

to suggest that homes with both mothers and fathers
in the family were most supportive 0f progress in the
handicapped child

Severity of child's handicap.--The more severely handi-

 

capped children are more likely to have mothers who

do not work out of the home for pay. In addition, Farber
and Ryckman speak of the "role crisis" created by the
excessive care demands placed on the mother. The more
she is involved with the handicapped child, the less

she is available for roles with other family members.
Tavorimina et a1. (1977) found that mothers of physically
handicapped children showed clearer signs of good mental

health if they worked for pay out of the home. Skelton

50

(1972) felt that children who were institutionalized

generally showed a greater severity of problems than

those who were kept at home, but outstanding exceptions

to these findings suggest that the specific strengths

of individual families were also a powerful predictor.

In an effort to understand the family effect of a severely

handicappped child, Fotheringham et a1. (1972) interviewed families
just before and one year following the placement of their handicapped
child in a residential institution and then compared these findings
to a control group of families who maintained their handicapped
children at home. On a scale of family functioning, the researchers
found that the families who had institutionalized their children
showed a decrease in effective family functioning at the end of
the year, which was comparable to the loss shown by families with
their children still at home. However, in the initial evaluation
before institutionalization, the experimental families appeared
less adequate in all areas of family functioning than the community
control group of families. In spite, of the year of "relief" these
families continued to deteriorate in functioning. The researchers
theorized that maladaptive family patterns had been developed to
cope with the stress of the handicapped child, and time alone did
not alter these habits. In particular, it appeared that the siblings
of the institutionalized child experienced a decrease in quality
of physical health. Farber and Ryckman (1965) found that when the
severely mentally retarded child is institutionalized, the normal

female sibling is most positively affected by the change. It is

51

obvious that significant research is needed in the area of sibling
effect. This piecemeal listing of family problems is reflective

of inadequate theoretical development in the area of the handicapped
child's effect on the family. It is likely that the female sibling
effect is a correlational effect with complex links to total family
functioning.

Kohut's (1966) review of the effects of a brain damaged
child on a family suggested that the degree of "social disorganization
in the home has a significant correlation with the quality of care
the child receives“ (p. 163). There are ggt however many examples
of research based on theoretical models for family functioning.
Singular concepts which are more often related to individual family
members' personalities or activities still seem to predominant in
this literature.

In summary, the presence of an autistic child in the family
has been conceptualized as an example of family stress when the
specific qualities of autism and the more general qualities of a
handicapping condition are considered. It would appear to impact
most heavily on mothers, but also show unique effects on siblings
and fathers. In writing of parent "Burn Out Syndrome," Sullivan
(1979) speaks of the complete and total exhaustion of physical,
psychological and emotional resources which some parents of autistic
children experience after long and intense caring. Sullivan suggests
that this is not rare and should be the impetus for important sensi-
tive, dynamic research. In summarizing a study of a twenty-four

hour respite care institution that was a "burn out extravaganza"

52

after eighteen months, Sullivan notes that a "few employees did

not burn out. They were the ones who had come to the unit with
several years experience with autistic children, who knew what to
expect from the beginning, who did not require emotional feedback
from the children, who were fascinated by the tiny behavioral gains
and who were skilled in consistent management. In addition, they
had strong outside attachments to their own families that enabled
them to utilize time off for emotional respite" (p. 126). If such
a high level of professional and personal knowledge and maturing
was necessary to prevent "service bankruptcy" in professionals serving
the autistic, it is likely that parents are experiencing severe
discouragements in the parenting role. This is conceptualized as
impacting on family functioning in comprehensive ways-~both in

action and reflection/evaluation.

Quality of Life
Schopler and Rutter (1978) summarized available research on
longitudinal treatment effects with autistic persons and concluded

that there have been shown almost no difference in the child's

 

intellectual level, only a modest impact on long-term language

 

development, but real differences in socialization, communication,
normalized behavior, and scholastic achievement. These areas of
success might impact on the family be lessening the intensity or
quantity of deviant behaviors; but might also suggest the vital
importance of the home/living environment as the appropriate area

for such teaching. If our best efforts with autistic children only

53

yield "behavioral socialization," families remain primarily responsible
for the care of very dependent children. Since the impetus for pro-
gram advocacy was partly to give the parents a more normalized family
development experience, it is suggestive of failure when mature
independent behavior is not the result of the resource investment
in autism. For families, this may mean renewed efforts at advocacy
for life-long care programs or concerted attempts to become
"co-trainers" in the home environment. Farber and Ryckman (1965)
reported that after a initial period of "euphoria" during the handi-
capped child's first year in a public school program, the family
appears to be impacted very little by the child's schooling. Bricker
and Casuso's (1979) experience with parent training in families of
the handicapped have taught them that parent education must be
approached from a comprehensive base and other family needs must
often precede the teaching of intervention skills. In addition,
Bricker and Casuso felt that new parenting behaviors could not be
maintained without child response and professional support. Since
autistic children often change only slowly, the response rate may
severely discourage a parent's, "teaching/training" efforts.

In the DeMyer (1979), Schopler et a1. (1979) and Marcus
et a1. (1978) descriptions of work with autistic parents, one is
struck by the references to mothers as observers, counselees, and
co-trainers. It is likely that most of these women do not work for
pay outside the home and they are creating for the family system a

supportive information resource. Their membership in the systems

54

of school/clinic is assured by the actuality of having a deviant
family member. Professionals have often been impressed by the fact
that many of these mothers feel unsupported by their spouses (DeMyer,
1979) and may have very few other social contacts. How then do
such parents evaluate their lives? Does satisfaction/happiness
become relative, for example, like Greenfield's (1973) gratefulness
for one night of uninterrupted sleep? It would appear that the
divorce rate among autistic parents is lower than that for other
handicaps (Love, 1970; DeMyer, 1979), but what does that suggest
about the quality of such marriages? Fotheringham and Morris (1976)
believe husbands and wives with handicapped children may blame each
other for their tragedy, sacrifice for the child and the family,
but basically withdraw and remain aloof from intimacy. It is possible
that the "despair and frustrations will out number the delights
of having a new child in the family and will adversely affect the
family's total functioning" (p. 11). Such families may remain intact
legally, but represent the condition described by family theorists
as "emotional divorce" (Olson et a1., 1979).

Clancy (1970) described an ongoing series of summer camps
for families of autistic children in Australia. Developed by
two professionals who were also parents of autistic children, the
camps were held in a resort area where there were abundant opportuni-
ties for recreation and leisure activities by different combinations
of family members. University students were assigned to care of
the autistic children for certain periods and activities were planned

for whole families, parents only, normal siblings, and all children.

55

As a reflection of the parent/professional value position, there
were opportunities for families to work on specific goals with their
autistic children, if they so chose. The model involved twelve
families for vacations from eight to twelve days in length and
stressed an atmosphere of informality and mutual support. Clancy
(1970) commented that "The family of any handicapped child finds
that their lives become inevitably woven around the needs and limita-
tions of the affected child. This is emphasized dramatically if
the handicap is that of the autistic process, for this disorder
manifests itself primarily as a sggigl one. In such a family, the
mental health of all members is at risk and it is not uncommon for
marriage to be jeopardized" (p. 150). This model is the only refer-
ence found in the literature which possibly utilized a total environ-
mental "1aboratory" for research. Unfortunately, since the experience
was described as primarily family-supportive, research data on speci—
fic family functioning and family satisfactions were not reported.
Another interesting example of total planning for an autistic
child is reported by Gabriel (1973) who supported an autistic child
through the entire process surrounding necessary open heart surgery.
While the planning described was certainly similar to that accom-
plished by experienced teachers, two aspects of the report were
extremely interesting as examples of the ecological constraints
or supports for a handicapped child. First, the author makes it
very clear that a great deal of public relations information pro-

cessing had to be carried on with very complex service systems in

56

order to carry out the recommended plan. The routine laboratory
and supervisory details of the hospital were practically homeostatic
with reference to any consideration of a small handicapped boy's
need for stability, consistency and sensitive handling. Second,
Gabriel considered that the medical process went well, largely due
to meticulous staff planning and commitment. Only in a fairly casual
way, was it revealed that the mother of the autistic child remained
at the hospital during the entire 10 day period and that the autistic
child's sister was simultaneously hospitalized for this same proce-
dure. It is likely that the re-creation of a "family system" with
the hospital system contributed greatly to a successful "medical"
experience.

The above work represents the intriguing nature of autism
to many professionals and the constaney of stand-by care demanded
by parents of autistic children when there is child interaction
with any system exogenous to the family. Graziano (1974) comments
that many parents of the autistic overlook physical problems in
their children because the symptoms are often marked by the child's
aberrant behavior and inability to communicate pain, as well as
the relationship problems inherrant in seeking medical service for
a bizarre, disruptive child. This tendency has very real economic
impacts on the quality of life for both children and families. Such
family practices which reflect the severe difficulties presented
by autistic children in even the providing of fundamental life needs
have not been investigated by researchers. The DeMyer (1979) study

is the first reported effort of longitudinal research which attempted

57

to include family functioning as one of the arenas of concern. How-
ever, the family measures are generally not longitudinal in nature,
only basic demographic information is reported in time comparative
terms. Families which contain severely handicapped children and
can no longer be described as causative agents in their offsprings'
disabilities, have not yet been studied with any intent to accurately
describe or comprehend their unique functioning. It is often assumed
that their overall quality of life is diminished (Byassee, 1975;
Cantwell et a1, 1978; and Culbertson, 1972) but there is no documen-
tation to that effect.

Rettig (1980) reviewed literature in the area of quality
of family life and felt that "studies of family well-being are in
'agreement that the marital relationship is of central importance
in determining health of the family system. The marriages in healthy
family systems were characterized by strong affectional bonds and
emotional support, shared responsibilities and leisure time, high
levels of interest and satisfaction with the sexual relationship,
open communication, and competence in problem solving'l (p. 74).
In view of DeMyer's judgments on the quality of marriages in parents
of the autistic, and the special stress of the autistic child
described above, one might predict an overall depression of marital
and family satisfaction in this population.

However, it is also probable that the presence of an autistic
child in a family, however great the specific stress he or she gene-

rates, is not a significant variable in predicting the quality

58

of family life. As Lewis et al. (1976) suggest, there may be no
"single thread" which can justifiably be used to predict family
well-being or family quality of life, given the impressive complexity
of family interrelationships. Yet autism appears to stand as such

a severe disability that its impact on quality of family life would
appear to be pervasive and complex.

Social science research literature in the past ten years
has increasingly attempted to document measures of the quality of
life in "subjective" ways as described by Andrews and Withey (1974).
These authors suggest that there are significant social and public
policy rationales for exploring people's internal sense of well-
being; all societies appear to universally agree that while means
of achievement may differ, the goals of individual life quality
are worthy and of crucial significance to societal leaders.

Andrews and Withey (1974) suggest that One of the key objec-
tives of quality of life research is to document developmental trends
in specific population subgroups to understand whether people are
becoming more or less satisfied with their lives. Because service
to special education students is a relatively recent universal pheno-
mena in the United States, educators are impressed by progress in
the establishment of specific services and tend to infer a resultant
increase in life quality for both these students and their families.
Yet Andrews and Withey (1974) suggest that the external "generalized"
indicators of well-being may improve while the parallel measures

of people's internal sense of well-being show decreased satisfaction.

59

Therefore, increased public education service to autistic and other
severely handicapped children may not impact on the quality of their
families lives.

Rettig (1980) reviewed research on quality of life which
included evaluations of marriage and family life as dependent vari-
ables. "Studies of perceived quality of life consistently found
feelings about family life to be highly correlated with feelings
about life-as-a-whole" (Rettig, p. 75). It appeared that the pre-
dictive power of family life for overall quality of life was parti-
cularly high for women and satisfaction with family life was most
important during the biologically productive years of life. While
in general, variations in perceived quality of life were not explained
by certain demographic variables (age, race, sex, income, education
or family life cycle stage) married persons were more satisfied
than single persons and family life consistently appeared to be
the most powerful or second most powerful predictor of life satisfac-
tion for both men and women. In a review of studies which included
family life as a dependent variable, Rettig (1980) documented studies
in which men appeared to evaluate their family life by slightly
different criteria than women. Men appeared to use individual mean-
ingful experiences such as satisfactions with leisure, friendships,
beauty and attractiveness to a greater extent than did women in
evaluating satisfaction with family life. Both men and women appeared
to use marriage or spousal relationships as a significant contributor

to their evaluation of family life, but both men and women expressed

60

greater satisfaction with their children than either family life

or overall life. In her study designed to test the power of the

Foa and Foa resource exchange theory in the prediction of evaluation
of marriage, family life, and overall life, Rettig (1980) found

that: marriage is the dimension of family life which yields the

most satisfaction and is the best predictor of quality of family

life for both men and women; men evaluate marriage and family more
positively than women; more husbands and wives agree on evaluation

of family life than marriage; and husbands and wives evaluate marriage
higher than family life or overall life. In addition, subjective
evaluations of satisfaction with resources received was more pre-
dictive of overall satisfaction with family life than were frequency
counts of resources received. These resources appeared ordered

in their power to predict satisfaction with family life, in the
following manner; love and affection, recognition and respect, com-
fort and assistance, sharing and companionship and shared meaning
(Rettig, p. 222). Rettig discovered that it was possible to identify
key individual resources, which were slightly different for men

and women, and which formed a credible and manageable set to use

for predicting evaluation of family life. In descending order of
power, for women these were: marriage, love and affection (love),
comfortableness at home (service) open and honest expression of
feelings (information) and respect (respect). For men, these identi-
fied variables were: marriage, things done together (shared time),
comfortableness at home (services), sexual relationship, (love/

Services) and love and affection (love). It is noteworthy that

61

Rettig (1980) found that while satisfaction with family life is
reported as being highest during child rearing years, satisfaction
with children does not enter the most powerful predictive set of
variables for either men or women in predicting satisfaction with

family life.

METHODOLOGY

This research study involved an analysis of quality of life
measures comparing a group of twenty-two couples who are parents
of autistic children with the two-hundred thirty-seven couples sur-

veyed in the Oakland County Quality of Life Study.

Autism Sample Selection

In the Spring of 1979, a "Needs Assessment Survey for Parents
of Autistic Children" (See Appendix) was circulated to all eight
of Michigan's existing self-contained programs for autistic students.
These questionnaires were either sent home with each child or were
given personally to parents attending parent organization meetings
at the school. The total population of families originally receiving
questionnaires was approximately 350. The parents were all given
stamped envelopes for return to the Department of Special Education,
Michigan State University. One-hundred ten questionnaires, or
approximately one-third of the total were returned with the fifty-
two items completed. Parents were asked to indicate their name
and phone number if they were willing to be contacted for further
interviews. Of the one-hundred ten returned questionnaires, approxi-
mately three-fourths provided information for follow-up contacts.

To select the autism group for this study, considerations

of time and other costs eliminated respondents who were located in

62

63

low-incidence areas of population in the State. In addition, it

was felt important to have several separate school programs repre-
sented and to obtain parents whose children represented a variety of
ages. The researcher's knowledge of autism programming in the State
reinforced the concept of selecting the oldest school programming
areas for several reasons. Most importantly, the oldest programs
are in the State's larger urban areas and have developed stable
diagnostic processes for student eligibility. The confusion over
accurate diagnosis is an extremely serious problem in new programs,
particularly in low population areas where diagnostic personnel

may not be adequately experienced with this handicapping condition.
In addition, the severe behavior disturbances of the autism popula-
tions must somehow be implicated in the recurrent stress surround-
ing home/school relationships. It has been observed that programs
experiencing the greatest stress between schodl and family repre-
sentatives appear to be in the program philosophy developmental
stages of the first three years. Since the researcher, as a former
director of an autism program in the central Michigan area might be
perceived by families as a "school representative," it was felt
important to draw the sample from the most stable programs whose
parent/school relationships were at least "comfortable." In addi-
tion, the administrators of the three programs from which the sample
was eventually drawn are well known to the researcher, have been in
their present positions an average of four years, and possess great

skill in public relations. While no direct effort was made to

64

contact any families through the schools, each of the directors was
informed of the research project and had general knowledge of its
area of concern. In actuality these relationships did prove help-
ful to the successful completion of the sample. After the researcher
had made phone contacts and obtained cooperation from a parent group
in one city, the parents were meeting in a routine public relations,
"clear the rumors“ session with the autism program administrator.

One mother raised the issue of appropriateness and ethics of this
research study. The administrator was able to offer very positive
support and encouragement toward their participation.

Once the three urban areas were selected for sample sites,
all single parent and foster parent homes were eliminated for pur-
poses of this study. From a pool of thirty-one families in the
three cities, phone calls were made directly to each family by the
researcher. The intent of the research project was explained and
it was made clear that both husbands and wives were needed for
participation.

Of the twenty-seven families eventually called (four were
unable to be located because of incomplete or inaccurate information)
one family was eliminated who had institutionalized their child
between April and December of 1979. In addition, two families could
not find a meeting date during January and February of 1980 which
would allow for the researcher's travel schedule and their family
work schedules. The fourth family was eliminated because of extremely

high stress and inability to participate at that time; the mother

65

had recently entered graduate school and they were seeking an insti-
tutional placement for their low-functioning aggressive adolescent
son. The fifth family was eliminated due to the mother's unexpected
surgery after the appointment had been made.

The response of parents to the request for participation
was overwhelmingly positive. In the original phone contacts, only
two persons indicated they wished to ask their spouse's agreement;
most call backs were simply to coordinate the appointment schedule.
While some parents indicated concern for the exact intention of
the study, their overwhelming response was positive toward the ideas
of "helping improve programs for my autistic child" or ''telling
how it really is" in life with their son or daughter. Several
parents suggested the names of other families they thought would
enjoy participating (these were not used unless they were already
on the sample list).

Autism Sample Description

Because of the deliberate selection of families whose child-
ren were in the older, more stable school programs, it was suggested
that these twenty-two families might represent an unusual sample
as compared with the entire one-hundred ten respondents. Therefore,
simple frequency counts were obtained for key demographic variables
comparing the chosen sample with the eighty-eight non-selected.
Within the Gray sample, there is a relatively higher percentage
of children in the preschool ages and a lower percentage in the

adolescent years. The mean age of the Gray sample is therefore

66

one year younger than the non-selected. The Gray respondent group
reported more evidence of "other handicapping conditions;" it is
difficult to know whether this represents greater diagnostic sophis-
tication, greater honesty and acceptance of their child's severity
of disability, or an artifact of the questionnaire item. Since
one-sixth of autistic adolescents show seizure disorders and approxi-
mately two-thirds of the autism population function at trainable
level or below, it is felt that this parent report does not truly
represent a difference in actual child functioning between the two
groups. Lotter (1967) reported that none of the autistic children
in the Middlesex Survey with IQ's above 50 exhibited other handi-
capping conditions. However, 77% of those with IQ's less than 50
showed other handicapping conditions.

Fifty-nine percent of the Gray sample reported their children
to be non-verbal as compared with fifty-one percent of the remaining
eighty-eight. However, since there were fifteen percent missing
data on this question for the group of eighty-eight, it is difficult
to believe that there are any absolute differences on this measure
for the two populations. The Gray sample is weighted toward somewhat
smaller families, over fifty percent having two to three children.
When the two groups are compared by ages of mothers and ages of
fathers, the mother's ages are almost identically patterned, while
the fathers in the non-selected group show a much greater range
of ages.

Families were asked how far they lived from their nearest

relative; the results indicate that approximately two-thirds of

67

both groups have a relative within five miles. The patterning is
slightly different with the Gray sample showing families somewhat
closer.

On the original questionnaire, parents were asked questions
pertaining to information sources regarding their autistic child's
diagnosis and program needs, school/home communication, family
relationships, and contacts or knowledge of other social service
agencies. The Gray sample group answered in substantially the same
manner as the remaining autism families except for six of the fifty
two items. An analysis of these responses indicates that the Gray
sample group is reporting more problems with the autistic child's
interference with the home "running smoothly," more satisfaction
with the amount of time spent away from the autistic child, more
emotional support from relatives, and slightly more confidence in
the ability of community agencies to provide service to their autis-
tic children. The Gray group reports more sibling upset with the
autistic child and slightly more contact with a professional advocacy
organization. Since the Gray sample was pulled from the longest
established programs, it may be that a more highly developed communi-
cation/support system would be accessible to these families. Since
the Gray sample was somewhat closer to relatives, this distance
may explain their reporting of significantly more relative support.
It would appear, however, that the Gray sample represents families
who may feel somewhat more satisfied with their family life and

more satisfied with support from a variety of exosystems.

68

When comparing this autism sample to published descriptions
of other autism groups, there are substantial similarities to the
DeMyer (1979) and Lotter (1967) demographic reports. The mean of
age of the Gray sample is twice that of the DeMyer group, but other
comparisons of sex, race, number of siblings, age of parents and
verbal behavior are substantially the same. There are fewer Gray
autism parents who have less than a high school diploma; there are more
Gray autism mothers who have at least a college degree. The compari-
son between socioeconomic status and occupational status is uneven;
it would appear that the Gray autism families represent a slightly
higher professional/managerial population bias. Letter (1967) found
43 percent of fathers of autistic children to be university graduates
or above, which is comparable to the DeMyer and Gray figures.

In summary, of the original one-hundred ten respondents
to the College of Education survey, it appears that the selected
research sample represents families which tend to be smaller, feel
somewhat more satisfied with their families and have fathers who
are somewhat older. There is a trend for the Gray families to feel
slightly more positive about support received from outside the family.
In comparison to reports in the literature, the Gray sample would
appear very similar to the group studied by DeMyer except for the
age of the autistic child and the mother's education level. Tables

for these comparisons can be found in the appendix.

69

Oakland Sample Selection

The two-hundred thirty-seven husband-wife pairs were drawn
from the Oakland Quality of Life Research Project which is an on-
going effort of the Departments of Human Environment and Design
and Family and Child Sciences in the College of Human Ecology at
Michigan State University. The project has received funding from
the Michigan and Minnesota Agricultural Experiment Stations1
data on four-hundred eighty-one subjects was originally collected
in November and December of 1977 and January and February of 1978.
A nationally known research firm was hired to draw the sample from
Oakland County in Michigan and to complete the process of delivery
and collection of the research instrument. Rettig (1980) has des-

cribed the selection process in detail.

Oakland Sample Description

Preliminary analyses completed on the data and reported
Sontag, Bubolz, and Slocum (1979) reveal a sample in which all
families were in the child-rearing stages of the family life cycle.
While the Oakland data were taken two years ago and hence the res-
pondent's would presently show a mean age of 39.5 for women and
42.2 for men, the age at time of survey completion for the two groups
of women is extremely close, with a 1.5 year higher mean age for
men in the autism sample. The distribution of ages for the two

1The research was funded by the Michigan Agricultural Experi-

ment Station under Project Numbers 3151 and 1249 with additional
support from the Minnesota Agricultural Experimental Station.

70

groups of women is very similar; the pattern between the two men's
group is different with a smaller percentage of autistic fathers
falling in the middle age ranges.

In the two groups, there are relatively equal numbers of
households containing additional relatives who were not members
of the nuclear family. For the autism group, these actually repre—
sented only two families in which adolescent male nephews were living
with the families for purposes of education/employment support.

A somewhat higher percentage of autism families have only two child-
ren.

There are more families among the autism who still report
older children living at home. In absolute numbers for the study,
this represents two families. In one family the child over twenty-
three is autistic, in the second family an older daughter who is
still attending college resides at home.

While approximately two-thirds of the Oakland women have
a high school diploma or less, sixty percent of the autism sample
have education beyond high school. For the men, forty-seven percent
of the Oakland group and fifty percent of the autism group have
a high school diploma or less, but the pattern of higher education
is quite different. For the autism group thirty-six percent of
the autism fathers have education beyond bachelor's degrees. The
employment status comparisons of women in the two groups reveals
that a higher percentage of autism women are actually working; this
figure is consistent with the higher levels of education found in

this group of mothers. An equivalent pattern of employment status

71

is seen between the two groups of men. There is a slight tendency
for women in the autism group to hold more professional, managerial
and sales positions in comparison with the Oakland group. This
direction is quite pronounced in the comparison between the two
men's groups. When comparing total family income levels, this dis-
parity between groups is not seen. Particularly since the Oakland
data are two years old, it would appear that the average income may
be slightly higher among the Oakland sample. With the evidence

of somewhat smaller families within the autism group, however, the
per capita income should be quite comparable.

In summary, frequency comparisons for demographic data on
the autism group and the Oakland reveal that autism families have
somewhat fewer children, a higher percentage of women working for
pay outside the home, and higher education levels for both husbands
and wives with resultant greater percentages of professional and
managerial employment positions. Tables of comparisons of this

demographic information are contained in the appendix.

Data Collection
The data collection for the Oakland sample is described
by Rettig (1980) and involved nominal payment to each family for
the completion of a questionnaire by both husband and wife. The
research team then called at each home to pick up the completed
questionnaires. Separate sealed envelopes were provided for both

husband and wife with instructions to discourage collusion of answers.

72

For the autism study, the researcher made initial phone
contacts and set weekend or evening appointments for a time both
husband and wife could be at home. After a brief description of
the study's intent, the researcher gave separate questionnaires
to husbands and wives and they were completed in her presence. Ques-
tions regarding the utilization of the scaled responses were answered
and occasional examples of a item's meaning were provided. In one
home where the husband could not read well, the researcher read
the questions while he recorded his answers on a separate question-
naire. The wife was not in the same room during this process. In
one other home, both husband and wife were poor readers and asked
frequent questions about vocabulary, but filled out the questionnaires

independently from opposite ends of the table.

Instrumentation

The major portion of the questionnaire for administration
to the families of autistic children was obtained from the Oakland
County Quality of Life Questionnaire (see Appendix). For purposes
of this research effort portions of the original questionnaire which
dealt with items about clothing, national government, children,
and energy conservation were deleted. The final research question-
naire therefore contained thirteen scales, only one of which is
used for analysis in this effort. All questions were originally
developed by the research staff at the Michigan Staff University
Quality of Life Research Project. The original questionnaire had

been approved by the Michigan State University Committee for Research

73

on Human Subjects. Informed consent forms were signed by each subject
(see Appendix).

The statistics for all items on the portion of the question-
naire utilized in this analysis were taken from the Terrible-Delighted
Scale (see Figure 3.1) which was developed by Andrews and Withey
(1974) and was found by them to adequately function as an interval
scale with the property of linear additivity for their large research
sample. Attempts by Andrews and Withey (1974) to substitute other,

more mathematically complex scales, did not prove elucidating.

Description of the Variables

 

Affective Evaluation of Family
Life

Numerous writers (Culbertson, 1977; Sullivan, 1970; Kysar,
1968; Paluszny, 1979) have commented on the serious effects which
an autistic child has on family functioning and satisfaction. Others
such as DeMyer (1979) and Warren (1978) feel that the presence of
an autistic child may either strengthen the family or lead to debili-
tation of individual members and then the entire group. The litera-
ture suggests that the numbers of single parents among the autistic
families is lower than the present national average and lower than
the special education rate suggested by Love (1970). In Holroyd's
(1976) research, the mothers of autistic children reported more
parent problems, more child problems and more family problems than
either the mothers of Down's Syndrome or psychiatric outpatient

clients. However, the autism mothers of the "high stress" groups

74

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75

were differentiated from the low stress group by the reporting of
five specific problem areas; four of these areas were classed as
"family problems."

To date, no research has attempted to evaluate autism effects
on normal siblings and Sullivan's (1979) writings have begun to
highlight the enormous effect that autistic children have on the
quality of family life. As a beginning research effort, it would
seem appropriate to utilize parents' subjective evaluations of family
life as a dependent variable to explore some of the relationships
among quality of life and people and resources judged important
to this evaluation. Therefore, affective evaluation of family life
is utilized as a dependent variable for the major analyses in this
research effort. In keeping with the model proposed by Andrews
and Withey (1974) for evaluation of overall life and utilized by
Rettig (1980) and Sontag et al. (1979), the statistical definition
of this variable is the mean of Family Life 1 and Family Life 2--
two identical questions asked approximately thirty minutes apart
in the questionnaire. See Table 1 for a complete listing of the
variables as questionnaire items.

Affective Evaluation of
Life-As-A-Whole

 

Because previous research (Andrews and Withey, 1974; Jackson,
1979; Rettig, 1980; Sontag et a1., 1970) had utilized the concept
of an individual's subjective evaluation of satisfaction with total
life as a significant dependent variable, this variable was utilized

in a like manner in this research for several of the preliminary

76

TABLE l.--Questionnaire Items Used to Measure Variables Under Study

 

 

Variable Questionnaire Itema
Affective Evaluation of Family Life Mean of
(Life 3) 1.3a and 9.1
Affective Evaluation of Life-As-A-Whole Mean of
(Life 3) 1.1 and 9.2

Affective Evaluation of Family Life by
Satisfaction with:

Your husband or wife 6.1a
Your children 6.1b
The love and affection you experience 6.1c
The closeness and sense of belonging
you feel 6.1d
The amount of respect you receive 6.1e
How comfortable it feels to be at home 6.1f
Your marriage 6.lg

Affective Evaluation of Family Life--

Your Marriage, Husband or Wife and

Children by Satisfaction with:
The way money is used 6.2a
The amount of money available for
personal use 6.2b
The material goods it enables you
to own 6.2c
The way decisions are made 6.2d

The things you do together 6.2e

77

TABLE l.--Continued

 

Variable Questionnaire Itema

 

Affective Evaluation of Family Life
by Satisfaction with:

The mutual helpfulness of family members 6.3a
The way household work is divided/

accomplished 6.3b
How openly and honestly you can

express feelings 6.3c
The kind of communication you have 6.3d
The amount of time the family spends

together “6.3e
Your sexual relationship 6.3f
The time you spend with your children 6.39
The time you spend with your husband

or wife 6.3h
Employment status 13.9b

 

aSee appendix for complete questionnaire.

78

analyses. Particularly with sensitivity to public and social policy
issues, it would seem important to identify whether the independent
variables present in the subgroup of families with autistic children
could significantly impact on overall life quality. In keeping

with the Andrews and Withey (1974) model, the statistic for this
variable was a simple mean of the responses on Life 1 and Life 2--
identical questions asked approximately thirty minutes apart on

the questionnaire.

People/Shared Time Resources.--Rettig (198D) conceptualized
the quality of shared time in the family as being a necessary condi-
tion for the exchange of resources. Since this research deals with
families who by definition include a severely handicapped person,
it was felt important to evaluate whether a collection of variables
which reflected specific people and shared time with those people
might reveal a significant effect on the satisfaction with family
life. Also called the "People Scale," these independent variables
are drawn from items developed by Rettig (1980) and included:

How would you feel about your own family life if you considered
only:

Your husband or wife?

Your children?

The amount of time the family spends together?

The time you spend with your children?

The time you spend with your husband or wife?

Rettig Resources.--The remaining independent variables were

 

drawn from research by Rettig (1980) and include individual evaluations

79

on the Terrible-Delighted Scale of satisfaction with resources con-
ceptualized as reflecting the Foa and Foa resource classes of love,
status, services, information, goods and money. These include:

How would you feel about your own family life if you con-
sidered only:

The love and affection you experience? (love)

The closeness and sense of belonging you feel? (love)

The amount of respect you receive? (respect)

How comfortable it feels to be at home? (services)

The way money is used? (goods and money)

The amount of money available for your personal use? (goods

and money)

The material goods it enables you to own? (goods and materials)

The way decisions are made? (information)

The things you do together? (shared time)

The mutual helpfulness of family members? (services)

The way housework is divided/accomplished? (services)

How openly and honestly you can express feelings? (information)

The kind of communication you have? (information)

Your sexual relationship? (love-services)

Data Analysis A

Research data were analyzed on the Control Data Corporation
6500 Model Computer at the Michigan State University computer labora-
tory. Programs were drawn from the Statistical package for the
Social Sciences (Nie, Hull, Jenkins, Steinbrenner, and Brent, 1975)
and consulting assistance from the Office of Research Consultation

in the College of Education.

Statistical Methods and Assumptions
The statistical methods which were used in the analysis
included: T—Tests of Means, paired T-Tests of Means, Cross Tabula-
tions, Pearson product moment correlations, and the forward method

of multiple regression.

80

T-Tests of Means and

Paired T-Tests

 

The following hypotheses1 were tested by simple T-tests of

means or paired T-tests of means:

H3:

H3a:

H3b:

H20:

H22:

1

Parents of autistic children will report lower mean
scores of evaluations of family life, marriage, child-
ren, and spouse than will parents of non-handicapped
children.

Mothers of autistic children will report lower mean
scores of overall evaluations of life, family life,
children and spouse than mothers of non-handicapped
children.

Fathers of autistic children will report lower mean
scores of overall evaluation of life, family life,
marriage, children and spouse than will fathers of
non-handicapped children.

In families with autistic children, mothers' evalua-
tions of overall life, family life, children, marriage
and spouse are significantly lower than fathers' evalua-
tions of these same dimensions.

Mothers of autistic children who work for pay out

of the home show the same mean evaluations of selected

All hypotheses are stated in the predicted form.

81

resources received in the family as mothers of autis-

tic children who do not work for pay out of the home.

The T-test for sample means tests the significance of the dif-

ference between two sample means for specified variables or, for
paired observations, arranged casewise. A significance level for

the t statistic is chosen which is then used to test the null hypoth-
esis that there are no differences between the population means

on that variable. In this analysis of an exploratory nature, a

Type II error (accepting the null when it is false) was judged to

be more serious and therefore the significance level for the T-

tests was set at .05. Variances of each of the samples are computed
or approximated for utilization in the t statistical test:

_<x1- x2) *1 4’2

d Sd

 

Where td is the t for the difference in means
Sd is the difference in sample variances

The two-tailed probability is computed which represents
the occurrence of a value greater or equal to t, sign ignored, and
is then utilized to accept or reject the null hypothesis.

In the paired observations analysis, the difference between
husbands' and wives' means for each variable is utilized. This
technique attempts to reduce extraneous influences on the variable;
for purposes of this study it highlights the pattern of agreement/
disagreement between spouses for specific variables. The T-test

assumes a normal distribution of the variable.

82

Pearson Product Moment
Correlation

 

The following questions were investigated through the use of
Pearson product moment correlations:

01: Do parents of autistic children show the same pattern
of relationship between evaluations of specific
resources and evaluation of family life as do parents
of non-handicapped children?

Q2: Do parents of autistic children show the same pattern
of relationship between evaluations of shared time
and people resources and their evaluation of family
life as do parents of non-handicapped children?

Correlational analysis provides a method of examining the

statistical results to identify patterns in the responses of sub-
groups. The Pearson correlation coefficient r is the test statistic
which provides a measure of the degree to which the variation observed
in one interval variable is related to the variation observed in

a second interval variable. The numerical value can range from

-1 to +1 with a perfect positive linear correlation designated as

+1. The r statistic assumes linearity of measurement, random sampling
and a bivariate normal distribution (Nie et al; 1975). Violations

of the assumptions yield a statistic which is robust according to

Nie (1975). The squared correlation coefficient describes the rela-
tive percent of common variance between two variables. The signifi-
cance level of r is reflective of its distance from zero. The mathe-

matical formula for r is:

83

 

Z 1 E 1 (x1 '.7) (Y1 ‘-V)
r‘:
11 1511x1112“ 2151111312 11/2
Where Xi = i th observation of variable X
Y. = i th observation of variable Y

1
N = number of observations

11 =2.NJ Xi/N

1 = mean of variable X

13] Y/N

1 mean of variable Y

T—zi

Pairwise deletion was used for all of the correlations; a case is
omitted from the compilation of a given coefficient if the value

of either of the two variables being considered is missing.

Cross Tabulations

 

The following hypothesis was tested by cross tabulation
analysis:
H3c: Mothers and fathers of autistic children will show
no differences in the pattern of spouse agreement
of evaluations of life-as-a-whole, family life,
marriage, spouse, and children when compared to
mothers and fathers of non-handicapped children.
Cross tabulation is simply a descriptive technique which
produces a joint frequency distribution of cases according to at
least two variables. In this analysis, the wife variables for life-
as-a-whole, family life, children, marriage and spouse were plotted

against the husband variables on these same measures to produce

84

five joint frequency tables. The measure of association between
the two variables can then be computed by the following formula for

Gamma:

=.IL;;JI
Gamma P + Q

where P is the number of concordant pairs and Q is the number of
discordant pairs. Both variables must be least be measured at ordi-
nal level. A positive value indicates a predominance of concordant
pairs, and values which move toward 1, sign ignored, show fairly
strong trends. The value of gamma can be taken as the probability
of correctly guessing the order of a pair of cases on one variable

once the ordering on the other variable is known.

Multiple Regression

The following hypotheses were investigated by multiple regres-

sion analysis with forward stepwise deletionzi

H4: In families with autistic children, the mothers'
evaluations of marriage do not contribute signifi-
cantly to the prediction of evaluation of family
life.

H5: In families with autistic children, the mothers'
evaluations of love and affection do not contribute
significantly to the prediction of evaluation of
family life.

H6: In families with autistic children, the mothers' evalua-

tion of how comfortable it feels to be at home.do not

H7:

H8:

H9:

H10:

H11:

H12:

H13:

85

contribute significantly to the prediction of evalua-
tion of family life.

In families with autistic children, the mothers'
evaluations of how openly and honestly feelings can be
expressed do not contribute significantly to the pre-
diction of evaluations of family life.

In families with autistic children, the mothers' evalua-
tions of the amount of respect received do not contri-
bute significantly to the prediction of evaluations of
family life.

In families with autistic children, the fathers' evalua-
tions of marriage do not contribute significantly to
the prediction of evaluations of family life.

In families with autistic children, the fathers' evalua-
tions of "things done together" do not contribute signi-
ficantly to the prediction of evaluations of family life.
In families with autistic children, the fathers' evalua-
tions of how comfortable it feels to be at home do not
contribute significantly to the prediction of evalua-
tion of family life.

In families with autistic children, the fathers' evalua-
tion of the sexual relationship do not contribute signi-
ficantly to the prediction of evaluation of family life.
In families with autistic children, the fathers' evalua-
tions of love and affection received do not contribute
significantly to the prediction of evaluation of family

life.

H14:

H15:

H16:

H17:

H18:

H19:

86

In families with autistic children, mothers' and
fathers' evaluations of marriage contribute at the

same level to their evaluations of family life as those
of mothers and fathers of non-handicapped children.

In families with autistic children, mothers' and
fathers' evaluations of children contribute to the
prediction of evaluation of family life at the same
level as mothers and fathers of non-handicapped children.
In families with autistic children, mothers' and
fathers' evaluations of spouse contribute to the predic—
tion of evaluations of family life at a level equal to
that of mothers and fathers of non-handicapped children.
In families with autistic children, the mothers' and
fathers' evaluations of time spent with children con-
tribute to the prediction of evaluations of family life
at the same levels as those of mothers and fathers of
non-handicapped children.

In families with autistic children, the mothers' and
fathers' evaluations of time with spouse contribute to
the prediction of their evaluations of family life at

a level equal to that of mothers and fathers of non-
handicapped children.

In families with autistic children, the people and shared
time resources are stronger predictors of affective
evaluations of family life than are the identified

Rettig resources.

87

The intention of multiple regression procedures is to identify the
minimum number or the most powerful set of independent variables
which account for the variance in the identified dependent variables
of interest. Furthermore, the forward stepwise inclusion method is
appropriate when the researcher is interested in making as good a
prediction to a criterion as possible on the basis of several pre-
dictor variables. In this analysis, the dependent variables were
either life-as-a-whole or family life.

In the forward stepwise solution, tests are performed at
each step to ascertain the contribution of the variable under con-
sideration if it were to enter the equation of prediction last.

The calculated F ratio is obtained at each step. In the final equa-
tion, the F-to-remove represents the loss caused to R by removing
a given variable. The independent variable which has the highest
zero correlation with the dependent variable enters the equation
first, followed by the variable which has the highest partial correla-
tion to the dependent variable untill all variables which meet the
pre-specified level of significance have entered. The statistical
multiple regression model is:

P-] . .
vi = 80 + 2 K - 1 X1k = e1
where: Yi is the dependent variable value on the ith trial

8 is the Y intercept which is a constant in the

0
multiple regression table

k is the change in the mean response of the depen-

dent variable with a unit increase in the

88

independent variable k when all other independent
variables in the equation are held constant;

11 ..., xi, p-l are the values of the independent
variables in the ith trial;

ei is the random error.

The assumptions of the multiple regression procedure are as

follows:
1. Random sampling
2. Normal Distribution
3. Equality of variance
4. Additivity
5. Linearity
6. Independence of observations
7. Interval measurements.

The F test statistics associated with multiple regression are
considered to be "robust" with regard to violation of these assump-
tions (Kerlinger, 1973). The overall accuracy of the prediction

2, the proportion of variation explained

equation is reflected by R
by the variables included in the regression equation. List wise dele-
tion of data was used for the regression analysis to ensure that all
computations of the regression equation are carried out on the same
universe of data. The F ratio for the overall equation tests the

null hypothesis that the sample has been drawn from a population where
the multiple correlation is equal to zero. Therefore the tests for
specific regression coefficients are necessary to ascertain whether
certain variables can be legitimately deleted from the regression

equation. Direct examination of residuals through a scatter plot will

reveal only random patterns if the regression equation accounts for

89

all the significant patterns between the independent and dependent

variables.

FINDINGS

The statistical procedures and test statistics are detailed
in Chapter III. In this chapter, the hypotheses and questions are
taken in order. The frequency data for the autism and Oakland popu-
lations are presented where appropriate and the summary statistics

from the statistical tests used are included.

Objective A

 

Obtain demographic information on a volunteer population
of parents of autistic children for comparison to published infor-

mation in the literature.

Hypothesis for Objective A

H1: The sample of autistic families used in this study
is enough representative of the universe of autistic families
reported in the literature to permit meaningful inferential state-
ments about autistic families known to other researchers.

As reported in Chapter II, the demographic information for
the autism sample supports meaningful comparison to the DeMyer (1979)
information and the figures reported by Lotter (1976), Rutter (1978)
and Paluszny (1979). Descriptive tables are contained in the appen-
dix and reveal similarities in family size, age of parents, race,

sex, verbal behavior, and presence of multihandicaps in the autistic

9O

91

child. The autism sample in this study includes mothers with a
slightly higher level of education, and families with somewhat
higher prestige scores for their occupations than those described in
previous studies.

In addition, comparisons between the autism sample used
for this study and those not selected from the original College
of Education Survey reveal that the autism parents are somewhat
more experienced with a variety of agencies, and feel good support
from professionals and extended family members. In a study in
which the concern is quality of life, the literature would suggest,
therefore, the greater possibility of a Type 11 error in hypotheses
testing. In other words, these autism families may show character-
istics which would be expected to raise their means of evaluation
of overall life and family life in comparison to the universe of
families with autistic children. In an initial exploratory effort,
this tendency would not be viewed in the negative.

H2: The sample of autistic families used in this study
is enough similar to families in the Oakland Quality of Life Study
to permit meaningful comparisons of data.

Tables in the appendix illustrates these comparisons and
can be summarized in the following manner: ages of men and women
are quite comparable, the men in the autism sample include a greater
proportion with education beyond a bachelor's degree and tend to
hold jobs in somewhat higher managerial levels than men in the Oak-

land sample. The women in the autism group show higher levels of

92

education and a slightly higher percentage work for pay out of the
home. While the age ranges of children in the two groups are com-
parable, a larger proportion of the autism families have only two
children. The per capita income reveals the Oakland group to be
slightly higher. Again, one might suspect that aside from their
handicapped child, the autism group represents parents who might
show more satisfaction with their life quality. In summary, it
would seemm that meaningful comparisons can be made between the two

samples studied.

Objective 8

 

Compare the relationships between parent reporting of overall
evaluations of life, family life, marriage, children, and spouse
in families of autistic children with families of non-handicapped

children.

Hypotheses for Objective 8

H3: Parents of autistic children will report lower mean
scores of evaluations of family life, marriage, children, and spouse
than will parents of non-handicapped children.

In Table 2, the descriptive statistics comparing the autism
and Oakland mothers and fathers on these variables are shown. It
appears that there is great similarity between the two groups on
these variables. The autism parents show a higher mean affective

evaluation of spouse, and marriage; neither of these differences

93

TABLE 2.--Descriptive Statictics for Means of Autism and Oakland
Parents on Affective Evaluations of Satisfaction with
Family Life and People Resources

 

 

Variable Autism Oakland
Spouse 5.909 5.786
Children 5.682 5.876
Marriage 6.000 5.903

Family Life 5.738 5.742

 

94

achieve significance level. The Oakland parents show slightly higher
means on affective evaluations of satisfaction with children, and
family life. Neither of these differences again, achieve signifi-
cance. By pooling the men and women from each sample, no significant
differences are revealed on any of the variables. The directional
hypothesis is rejected by these data.

H3a: Mothers of autistic children will show lower mean scores
of affective evaluations of family life, marriage, children, and
spouse than will mothers of non-handicapped children.

Table 3 reveals that women in the autism group show
lower mean scores for affective evaluations of spouse, children
and family life, and higher mean scores for affective evaluations
of marriage than the Oakland women. However, the T-tests do not
reach significance on any of these variables and the directional
hypotheses is rejected. The test for the mean of satisfaction with
children is the only one which begins to approach significance.

H3b: Fathers of autistic children will report lower mean
scores of overall evaluation of life, family life, marriage, children,
and spouse than will fathers of non-handicapped children.

From Table 4 it can be seen that the means of the autism
fathers are higher than the Oakland fathers on affective evaluations
of spouse, children, marriage and family life; only on satisfaction
with spouse is the significance level approached (.058). Therefore,

the directional hypotheses for fathers should be rejected.

95

TABLE 3.--T-Tests of Means of Affective Evaluations of Selected
Domains and Resources for Women in Autism and Oakland

Groups

 

 

 

Satisfaction with Aitism MeanOakland Value Significance
Children 5.409 5.803 -1.81 .081
Spouse 5.591 5.721 - .44 .666
Marriage 5.864 5.835 .11 .916
Family Life 5.571 5.636 - .21 .781
Life 5.336 5.437 - .36 .820

 

96

TABLE 4.--T-Tests of Means of Affective Evaluations of Selected
Domains and Resources for Men in Autism and Oakland Groups

 

 

 

Means T
Satisfaction with Autism Oakland Value Significance
Children 5.955 5.949 .03 .978
Spouse 6.227 5.851 1.97 .058
Marriage 6.136 5.970 .73 .469
Family Life 5.905 5.848 .12 .969

Life 5.581 5.476 .56 .612

 

97

H3c: Mothers and fathers of autistic children will show no
differences in the pattern of spouse agreement of evaluations of
life-as-a-whole, family life, marriage, spouse and children when
compared to mothers and fathers of non-handicapped children.

Cross tabulations for this hypotheses are presented in Tables
D-l through D-lO (Appendix D) for autism and Oakland husband-wife pairs
separately. Table 5 summarizes these findings. Absolute concor-
dance for couples is quite similar for both samples on affective
evaluations of family life, children, and marriage. There are
approximately ten percent fewer autism couples who agree on evalua-
tions of life-as-a-whole and fourteen percent more autism couples who
agree on affective evaluations of spouse. When the figures are com-
pared for absolute concordance or one category difference, approxima-
tely equal agreement is seen for life-as-a-whole, and children. Seven
percent less agreement is seen in autism couples for evaluation of
spouse, and thirteen percent less agreement for affective evaluations

of family life and marriage.

Objective C

 

Explore the relationships between parent evaluations of
selected dimensions of family life in families with autistic child-
ren and families of non-handicapped children.

Sub C.1: Identify the resources which are the most powerful
predictors of family life evaluation for parents of autistic children

in comparison to parents of non-handicapped children.

98

TABLE 5.--Summary of Spousal Agreement for Life-As-A-Whole, Family
Life, Marriage, Spouse and Children in Oakland and
Autism Groups.

 

Domain Spouse Agreement One Category Difference
Autism Oakland Autism Oakland

 

Life-As-A-Whole 33.3% 43.4% 83.8% 85.8%
Family Life 40.9% 43.2% 77.1% 90.2%
Marriage 36.3% 42.6% 67.1% 80.8%
Spouse 59.1% 45.6% 72.7% 80.9%
Children 50.0% 47.2% 85.3% 83.4%

 

99

Sub C.2: Identify the evaluations of shared time and people
resources in families of autistic children which are the strongest
predictors of parent evaluations of family life in comparison to

families of non-handicapped children.

Hypotheses andyguestions for Objective C

Q1: Do parents of autistic children show the same pattern
of resources as predictors of their evaluation of family life as
do parents of non-handicapped children?

Hypotheses for Mothers:

H4: In families with autistic children, the mothers' evalua-
tions of marriage do not contribute significantly to the prediction
of evaluation of family life.

H5: In families with autistic children, the mothers' evalua-
tions of love and affection experienced do not contribute signifi-
cantly to the prediction of evaluation of family life.

H6: In families with autistic children, the mothers' evalua-
tions of how comfortable it feels to be at home do not contribute
significantly to the predictions of evaluation of family life.

H7: In families with autistic children, the mothers' evalua-
tions of how openly and honestly feelings can be expressed do not
contribute significantly to the prediction of evaluations of family
life.

H8: In families with autistic children, the mothers' evalua-
tions of the amount of respect received do not contribute signifi-

cantly to the prediction of evaluations of family life.

100

Rettig (1980) has identified marriage, love and affection,
comfortableness at home, honest expression of feelings and respect
received as the most powerful predictors in descending order of
affective evaluations of family life by women in the Oakland group.
The R2 values from the regression analysis values for these resources
are reported by Rettig to be 54% for marriage and an additional 7%
for love and affection. Comfortableness at home, open and honest
expression of feelings, and respect received contributed an additional
2% to the predictions of variance in family life. The entire set
accounted for 63% of the variance. Table 6 summarizes the regression
results for women in the autism group. Most notable is the fact
that marriage did not even enter the equation with T set at .001. In
other words, marriage was not able to account for even .1% of the
variance in evaluation of family life not accounted by the other four.
For the remaining four resources, only 42% of the variance in family
life is explained. Love and affection accounts for 35%, the next
two account for an additional 4;%. The fourth adds only .001 and
takes the overall F above the critical value to .055. Examination
of the scatterplot of residuals reveals a completely randomized
pattern, which reinforces the prediction equation and confirms the
assumption of normality. It would appear that hypotheses 4 and
8 should be retained and hypotheses 5, 6 and 7 are rejected. In
other words, love and affection experienced, open and honest expression
of feelings, and comfortableness at home appear to contribute signi-

ficantly to the prediction of affective evaluation of family life

101

 

 

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102

in women in the autism group. In view of the relative position of
marriage in the regression equation for both groups and the total

variance accounted for by the five resources for the Oakland women,
it appears that the pattern of resources is significantly different

for the autism group of women.

Hypotheses for Fathers:

H9: In families with autistic children, the fathers' evalua-
tions of marriage do not contribute significantly to the prediction
of evaluations of family life.

HlO: In families with autistic children, the fathers' evalua-
tions of things done together do not contribute significantly to the
prediction of evaluations of family life.

H11: In families with autistic children the fathers' evalua-
tions of how comfortable it feels to be at home do not contribute
significantly to the prediction of evaluation of family life.

H12: In families with autistic children, the fathers' evalua-
tions of the sexual relationship do not contribute significantly to
the prediction of evaluation of family life.

H13: In families with autistic children, the fathers' evalua-
tions of love and affection received do not contribute significantly
to the prediction of evaluations of family life.

Rettig (1980) identified a series of resources which were
the most powerful predictors of evaluation of family life for the
Oakland men. These resources and their relative contribution to

the regression equation for Oakland men in descending order are

103

as follows: marriage - 48%; things done together added 7%, comfort-
ableness at home added 4%; sexual relationship added 1% and love and
affection added .3%. The entire set of resources accounted for 60%
of the variance in the Oakland men's evaluations of family life.
Table 7 represents the summary statistics for the men in the autism
group. This set of five resources accounted for 82% of the variance
in the autism men's evaluation of family life, with the greatest
contributions attributable to marriage (77%) and sexual relationship
(2%). The next three resources add an additional 4% with the overall
F significance remaining at p < .001. Examination of the residuals
reveals a completely random pattern. Evidently, for men in the autism
group, these resources are significant and powerful predictors of
evaluation of family life. Therefore, hypotheses 9, 10, 11, 12 and
13 should be rejected.

02: Do parents of autistic children show the same pattern
of shared time and people resources as predictors of their evaluation
of family life as do parents of non-handicapped children?

H14: In families with autistic children, mothers' and fathers'
evaluations of shared time as a family, contribute to evaluation of
family life at the same level as those of mothers and fathers of non-
handicapped children.

H15: In families with autistic children, mothers' and fathers'
evaluations of children contribute to the prediction of their evalua-
tion of family life at the same level as mothers and fathers of non-

handicapped children.

104

 

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mo =o_po:_m>m o>wpoome< eo cowoomooco ozo cow m_mxpo:< cowmmocmom opowp_:z wo accessm11.m mom<p

105

H16: In families with autistic children, mothers' and fathers'
evaluations of spouse contribute to the prediction of their evalua-
tions of family life at levels equal to those of mothers and fathers
of non-handicapped children.

H17: In families with autistic children, the mothers' and
fathers' evaluations of time spent with children contribute to the
prediction of their evaluations of family life at the same levels
as that of mothers and fathers of non-handicapped children.

H18: In families with autistic children, the mothers' and
fathers' evaluations of time spent with spouse contribute to the
prediction of their evaluation of family life at levels equal to
those of mothers and fathers of non-handicapped children.

Question 2 is reflective of an exploratory interest in the
power of the satisfaction with "people resources" to explain variance
in the affective evaluations of family life. Since a prerequisite
for the existence of a family is identified members, it is theorized
that satisfaction with these people and time shared with them would
constitute a valid way to predict evaluation of family life.

Since the sample of autism families is defined by a quality of

one of its members it is suggested that evaluations of people

and shared time may discriminate more clearly between the two groups
than the identified Rettig resources.

Table 8 presents the summary of the regression analysis
on the people and shared time resources against family life for

women in the Oakland group. The five resources account for 53%

106

 

 

 

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107

of the variance in family life, ordered in the following manner;
spouse - 40%, shared time with children - 9%, children - 2%, shared
time as family - 1.6%, and shared time with spouse - .l%. The signi-
ficance levels for each step are all less than .01. Table 9 sum-
marizes these same variables in the regression equation for the

2

Oakland men. The results are very similar in ordering, R change

2 except for the reversal of positioning

per step, and overall R
of shared time with spouse and shared time with children in comparison
to the Oakland women. The women's equation included shared time

with children at step 2 and shared time with spouse at step 5; in

the men's equation the positions reversed. However, for the Oakland
sample of both men and women, the Rettig resources account for approxi-
mately 10% more variance in evaluation of family life.

In Table 10, the women's regression equation for the autism
group is shown. Here the patterning shows satisfaction with children
and shared time with children entering at steps 1 and 2 respectively.
Shared time with family enters at the intermediate step 3, while
spouse and shared time with spouse enter at steps 4 and 5. The
total variance of evaluation of family life accounted for by these
5 variables is 52% which is comparable to the 53% for Oakland women,
but represents an increase of 10% from the variance accounted for
by the Rettig resources in the women's autism group. For men in
the autism group, Table 11 shows that the variable "shared time
with family" does not reach the specified level to enter the equation.

The other four account for 63% of the variance in family life with

108

 

 

 

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109

 

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110

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111

the largest power found in the first two steps; spouse - 43% and
shared time with children - 16%. Children and shared time with

spouse contribute 3% and 1.3% respectively. Thus, the men in the
autism group utilize spouse and time with children as important
considerations in family life evaluation--a pattern also seen in women
in the Oakland group. For the autism men, the regression equation
utilizing the Rettig variables accounts for 20% more of the variance
of affective evaluations of family life than do people and shared

time resources

In summarizing the hypotheses concerned with people and
shared time, Hypothesis 14 is rejected because shared time with
family does not even enter the regression equation for autism men.
Women in the autism group and men and women in the Oakland group all
ranked this variable quite comparably. Hypothesis 15 dealt with
evaluation of children and is rejected. Children entered at step 3
for men in the Oakland group and at step 2 for both Oakland women and
autism men, but it enters the equation at step one for women in the
autism group and thus accounts for 38% of the variance in family life
for that group. It contributed only 2-3% to the variance for the
other three groups.

Hypothesis 16 deals with evaluation of spouse which enters at
step 1 accounting for 39-42% of the variance in family life for men
and women in the Oakland group and men in the autism group. However,
for the women in the autism group, spouse enters at step 4 carrying

only a .2% increase in the R2. Hypothesis 16 is, therefore, rejected.

112

Hypothesis 17 deals with shared time with children and repre-
sents the closest similarity in ordering across all groups. This
variable for autism men and women and Oakland women entered at step 2.
In both women's equations, it adds 8%. This variable enters last for
Oakland men and offers only .6% change in the R2. For the autism men,
this variable contributes 15% to the R2 at step 2. Thus, shared time
with children shows significant differences for men across the two
groups and thus Hypothesis 17 should be rejected.

Hypothesis 18 deals with evaluation of spouse and is rejected
because of the contrasting pattern shown by the autism women where
it entered at step 4 and contributed only .1% to the R2. For the
other three groups, spouse enters at step 1 and accounts for 39-42%
of the variance in evaluation of family life. Thus, there are signi-
ficantly different patterns shown by mothers and fathers in the
autism and Oakland groups across each of the variables on this scale.
There is a general pattern of the autism women being most consistently
different from the three other groups. Oakland men and women are
more alike than are autism men and women for this scale.

H19: In families with autistic children, the people and
shared time resources are stronger predictors of affective evaluations
of family life than are the Rettig resources.

The results of the regression equations for the Rettig resources
(Tables 8-11) show that 82% of the variance for affective evaluations

of family life by autism men are accounted for; 42% of the variance

in autism women's affective evaluations of family life are accounted

113

for by the Rettig resources. The people and shared time resources
account for 63% of the variance in affective evaluations of family
life by men and 52% by women. Therefore, these results would suggest
that the directional hypothesis for autism men should be rejected,
but accepted for autism women; the Rettig resources explain 82% of
the autism men's variance in affective evaluations of family life,
and the people and shared time resources explain only 52% of the
variance in affective evaluations of family life for women. Women
appear to be more directly impacted by the people in the family, but
other variables not herein selected account for more variance in

women's affective evaluations of family life than is true for men.

Objective D

 

Explore the relationships between evaluations of selected
dimensions of family life by fathers of autistic children in com-

parison to mothers of autistic children.

Hypotheses for Objective D
H20: In families with autistic children, mothers' evaluations
of overall life, family life, children, marriage, and spouse are signi-
ficantly lower than fathers' evaluations of these same dimensions.
Table 12 shows the means and significance levels of the 2-
Tailed paired T-test for women and men in the autism group. For all
five of these variables, women's scores are lower than men's, but only

for evaluation of children and spouse are these differences significant.

96

TABLE 4.--T-Tests of Means of Affective Evaluations of Selected
Domains and Resources for Men in Autism and Oakland Groups

 

 

 

Means T
Satisfaction with Autism Oakland Value Significance
Children 5.955 5.949 .03 .978
Spouse 6.227 5.851 1.97 .058
Marriage 6.136 5.970 .73 .469
Family Life 5.905 5.848 .12 .969

Life 5.581 5.476 .56 .612

 

97

H3c: Mothers and fathers of autistic children will show no
differences in the pattern of spouse agreement of evaluations of
life-as-a-whole, family life, marriage, spouse and children when
compared to mothers and fathers of non-handicapped children.

Cross tabulations for this hypotheses are presented in Tables
0-1 through D-lO (Appendix D) for autism and Oakland husband-wife pairs
separately. Table 5 summarizes these findings. Absolute concor-
dance for couples is quite similar for both samples on affective
evaluations of family life, children, and marriage. There are
approximately ten percent fewer autism couples who agree on evalua-
tions of life-as-a-whole and fourteen percent more autism couples who
agree on affective evaluations of spouse. When the figures are com-
pared for absolute concordance or one category difference, approxima-
tely equal agreement is seen for life-as-a-whole, and children. Seven
percent less agreement is seen in autism couples for evaluation of
spouse, and thirteen percent less agreement for affective evaluations

of family life and marriage.

Objective C

 

Explore the relationships between parent evaluations of
selected dimensions of family life in families with autistic child—
ren and families of non-handicapped children.

Sub C.1: Identify the resources which are the most powerful
predictors of family life evaluation for parents of autistic children

in comparison to parents of non-handicapped children.

98

TABLE 5.--Summary of Spousal Agreement for Life-As-A-Whole, Family
Life, Marriage, Spouse and Children in Oakland and
Autism Groups.

 

Domain Spouse Agreement One Category Difference
Autism Oakland Autism Oakland

 

Life-As-A-Whole 33.3% 43.4% 83.8% 85.8%
Family Life 40.9% 43.2% 77.1% 90.2%
Marriage 36.3% 42.6% 67.1% 80.8%
Spouse 59.1% 45.6% 72.7% 80.9%
Children 50.0% 47.2% 85.3% 83.4%

 

99

Sub C.2: Identify the evaluations of shared time and people
resources in families of autistic children which are the strongest
predictors of parent evaluations of family life in comparison to

families of non-handicapped children.

Hypotheses and Questions for Objective C

01: Do parents of autistic children show the same pattern
of resources as predictors of their evaluation of family life as
do parents of non-handicapped children?

Hypotheses for Mothers:

H4: In families with autistic children, the mothers' evalua-
tions of marriage do not contribute significantly to the prediction
of evaluation of family life.

H5: In families with autistic children, the mothers' evalua-
tions of love and affection experienced do not contribute signifi-
cantly to the prediction of evaluation of family life.

H6: In families with autistic children, the mothers' evalua-
tions of how comfortable it feels to be at home do not contribute
significantly to the predictions of evaluation of family life.

H7: In families with autistic children, the mothers' evalua-
tions of how openly and honestly feelings can be expressed do not
contribute significantly to the prediction of evaluations of family
life.

H8: In families with autistic children, the mothers' evalua-
tions of the amount of respect received do not contribute signifi-

cantly to the prediction of evaluations of family life.

100

Rettig (1980) has identified marriage, love and affection,
comfortableness at home, honest expression of feelings and respect
received as the most powerful predictors in descending order of
affective evaluations of family life by women in the Oakland group.
The R2 values from the regression analysis values for these resources
are reported by Rettig to be 54% for marriage and an additional 7%
for love and affection. Comfortableness at home, open and honest
expression of feelings, and respect received contributed an additional
2% to the predictions of variance in family life. The entire set
accounted for 63% of the variance. Table 6 summarizes the regression
results for women in the autism group. Most notable is the fact
that marriage did not even enter the equation with T set at .001. In
other words, marriage was not able to account for even .1% of the
variance in evaluation of family life not accounted by the other four.
For the remaining four resources, only 42% of the variance in family
life is explained. Love and affection accounts for 35%, the next
two account for an additional 44%. The fourth adds only .001 and
takes the overall F above the critical value to .055. Examination
of the scatterplot of residuals reveals a completely randomized
pattern, which reinforces the prediction equation and confirms the
assumption of normality. It would appear that hypotheses 4 and
8 should be retained and hypotheses 5, 6 and 7 are rejected. In
other words,love and affection experienced, open and honest expression
of feelings, and comfortableness at home appear to contribute signi-

ficantly to the prediction of affective evaluation of family life

101

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102

in women in the autism group. In view of the relative position of
marriage in the regression equation for both groups and the total

variance accounted for by the five resources for the Oakland women,
it appears that the pattern of resources is significantly different

for the autism group of women.

Hypotheses for Fathers:

H9: In families with autistic children, the fathers' evalua—
tions of marriage do not contribute significantly to the prediction
of evaluations of family life.

HlO: In families with autistic children, the fathers' evalua-
tions of things done together do not contribute significantly to the
prediction of evaluations of family life.

H11: In families with autistic children the fathers' evalua-
tions of how comfortable it feels to be at home do not contribute
significantly to the prediction of evaluation of family life.

H12: In families with autistic children, the fathers' evalua-
tions of the sexual relationship do not contribute significantly to
the prediction of evaluation of family life.

H13: In families with autistic children, the fathers' evalua-
tions of love and affection received do not contribute significantly
to the prediction of evaluations of family life.

Rettig (1980) identified a series of resources which were
the most powerful predictors of evaluation of family life for the
Oakland men. These resources and their relative contribution to

the regression equation for Oakland men in descending order are

103

as follows: marriage - 48%; things done together added 7%, comfort-
ableness at home added 4%; sexual relationship added 1% and love and
affection added .3%. The entire set of resources accounted for 60%
of the variance in the Oakland men's evaluations of family life.
Table 7 represents the summary statistics for the men in the autism
group. This set of five resources accounted for 82% of the variance
in the autism men's evaluation of family life, with the greatest
contributions attributable to marriage (77%) and sexual relationship
(2%). The next three resources add an additional 4% with the overall
F significance remaining at p < .001. Examination of the residuals
reveals a completely random pattern. Evidently, for men in the autism
group, these resources are significant and powerful predictors of
evaluation of family life. Therefore, hypotheses 9, 10, ll, 12 and
13 should be rejected.

02: Do parents of autistic children show the same pattern
of shared time and people resources as predictors of their evaluation
of family life as do parents of non-handicapped children?

H14: In families with autistic children, mothers' and fathers'
evaluations of shared time as a family, contribute to evaluation of
family life at the same level as those of mothers and fathers of non-
handicapped children.

H15: In families with autistic children, mothers' and fathers'
evaluations of children contribute to the prediction of their evalua-
tion of family life at the same level as mothers and fathers of non-

handicapped children.

104

 

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105

H16: In families with autistic children, mothers' and fathers'
evaluations of spouse contribute to the prediction of their evalua-
tions of family life at levels equal to those of mothers and fathers
of non-handicapped children.

H17: In families with autistic children, the mothers' and
fathers' evaluations of time spent with children contribute to the
prediction of their evaluations of family life at the same levels
as that of mothers and fathers of non-handicapped children.

H18: In families with autistic children, the mothers' and
fathers' evaluations of time spent with spouse contribute to the
prediction of their evaluation of family life at levels equal to
those of mothers and fathers of non-handicapped children.

Question 2 is reflective of an exploratory interest in the
power of the satisfaction with "people resources" to explain variance
in the affective evaluations of family life. Since a prerequisite
for the existence of a family is identified members, it is theorized
that satisfaction with these people and time shared with them would
constitute a valid way to predict evaluation of family life.

Since the sample of autism families is defined by a quality of

one of its members it is suggested that evaluations of people

and shared time may discriminate more clearly between the two groups
than the identified Rettig resources.

Table 8 presents the summary of the regression analysis
on the people and shared time resources against family life for

women in the Oakland group. The five resources account for 53%

106

 

 

 

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107

of the variance in family life, ordered in the following manner;
spouse - 40%, shared time with children - 9%, children - 2%, shared
time as family - 1.6%, and shared time with spouse - .1%. The signi-
ficance levels for each step are all less than .01. Table 9 sum-
marizes these same variables in the regression equation for the

2 change

Oakland men. The results are very similar in ordering, R
per step, and overall R2 except for the reversal of positioning

of shared time with spouse and shared time with children in comparison
to the Oakland women. The women's equation included shared time

with children at step 2 and shared time with spouse at step 5; in

the men's equation the positions reversed. However, for the Oakland
sample of both men and women, the Rettig resources account for approxi-
mately 10% more variance in evaluation of family life.

In Table 10, the women's regression equation for the autism
group is shown. Here the patterning shows satisfaction with children
and shared time with children entering at steps 1 and 2 respectively.
Shared time with family enters at the intermediate step 3, while
spouse and shared time with spouse enter at steps 4 and 5. The
total variance of evaluation of family life accounted for by these
5 variables is 52% which is comparable to the 53% for Oakland women,
but represents an increase of 10% from the variance accounted for
by the Rettig resources in the women's autism group. For men in
the autism group, Table 11 shows that the variable "shared time
with family" does not reach the specified level to enter the equation.

The other four account for 63% of the variance in family life with

108

 

 

 

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109

 

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110

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oocogm coo: coouooomouom .o
ooo. wommo. «momo. commo. mmmoo.o cocoooso coo: coopooomouom .m
ooo. mmomP. ooomm. ooooo. oooop.o coco—ogo coo: coouuoomouom .N
ooo. mmomo. mmomo. moomo. moopo.m_ omooom goo: coopooomouom .o
o o o_ooo_oz coooo oo o oocooom ocooocoo ooom

oocoooooooom mocooo mm

 

oooco Emou=< co co: coo
.oooooooom Ho: cooco .oeoo oocogm oco oooooo goo; coooooomopom oo :mouoooo>m on moo; zooEoo
oo cooooooo>m o>ouoooo< oo ooouooooco on» coo momaooc< coommocoom o—oopooz oo acoEE=m11. Po uom<o

111

the largest power found in the first two steps; spouse — 43% and
shared time with children - 16%. Children and shared time with

spouse contribute 3% and 1.3% respectively. Thus, the men in the
autism group utilize spouse and time with children as important
considerations in family life evaluation--a pattern also seen in women
in the Oakland group. For the autism men, the regression equation
utilizing the Rettig variables accounts for 20% more of the variance
of affective evaluations of family life than do people and shared

time resources

In summarizing the hypotheses concerned with people and
shared time, Hypothesis 14 is rejected because shared time with
family does not even enter the regression equation for autism men.
Women in the autism group and men and women in the Oakland group all
ranked this variable quite comparably. Hypothesis 15 dealt with
evaluation of children and is rejected. Children entered at step 3
for men in the Oakland group and at step 2 for both Oakland women and
autism men, but it enters the equation at step one for women in the
autism group and thus accounts for 38%of the variance in family life
for that group. It contributed only 2-3% to the variance for the
other three groups.

Hypothesis 16 deals with evaluation of spouse which enters at
step 1 accounting for 39-42% of the variance in family life for men
and women in the Oakland group and men in the autism group. However,
for the women in the autism group, spouse enters at step 4 carrying

only a .2% increase in the R2. Hypothesis 16 is, therefore, rejected.

112

Hypothesis 17 deals with shared time with children and repre-
sents the closest similarity in ordering across all groups. This
variable for autism men and women and Oakland women entered at step 2.
In both women's equations, it adds 8%. This variable enters last for
Oakland men and offers only .6% change in the R2. For the autism men,
this variable contributes 15% to the R2 at step 2. Thus, shared time
with children shows significant differences for men across the two
groups and thus Hypothesis 17 should be rejected.

Hypothesis 18 deals with evaluation of spouse and is rejected
because of the contrasting pattern shown by the autism women where
it entered at step 4 and contributed only .1% to the R2. For the
other three groups, spouse enters at step 1 and accounts for 39-42%
of the variance in evaluation of family life. Thus, there are signi-
ficantly different patterns shown by mothers and fathers in the
autism and Oakland groups across each of the variables on this scale.
There is a general pattern of the autism women being most consistently
different from the three other groups. Oakland men and women are
more alike than are autism men and women for this scale.

H19: In families with autistic children, the people and
shared time resources are stronger predictors of affective evaluations
of family life than are the Rettig resources.

The results of the regression equations for the Rettig resources
(Tables 8-11) show that 82% of the variance for affective evaluations

of family life by autism men are accounted for; 42% of the variance

in autism women's affective evaluations of family life are accounted

113

for by the Rettig resources. The people and shared time resources
account for 63% of the variance in affective evaluations of family
life by men and 52% by women. Therefore, these results would suggest
that the directional hypothesis for autism men should be rejected,
but accepted for autism women; the Rettig resources explain 82% of
the autism men's variance in affective evaluations of family life,
and the people and shared time resources explain only 52% of the
variance in affective evaluations of family life for women. Women
appear to be more directly impacted by the people in the family, but
other variables not herein selected account for more variance in

women's affective evaluations of family life than is true for men.

Objective D

 

Explore the relationships between evaluations of selected
dimensions of family life by fathers of autistic children in com-

parison to mothers of autistic children.

Hypotheses for Objective D

 

H20: In families with autistic children, mothers' evaluations
of overall life, family life, children, marriage, and spouse are signi-
ficantly lower than fathers' evaluations of these same dimensions.

Table 12 shows the means and significance levels of the 2-
Tailed paired T-test for women and men in the autism group. For all
five of these variables, women's scores are lower than men's, but only

for evaluation of children and spouse are these differences significant.

114

TABLE 12.--Summary of Paired T-Tests for Affective Evaluations
of Selected People Resources by Mothers and Fathers of

Autistic Children

 

 

 

Means Significance

Variable Women Men of T-Test
Overall Life 5.114 5.4762 .256
Family Life 5.500 5.909 .236
Children 5.409 5.9545 *.004
Marriage 5.8636 6.1364 .389
Spouse 5.590 6.227 *.031

 

*Significant differences.

115

These mean differences range from .273 (marriage) to .637 (spouse)

and would seem to represent a trend of overall lower mean satisfac-
tion with the people resources for women in families with autistic

children. The hypothesis is rejected.

H21: In families with autistic children, mothers' evaluations
of selected resources will form the same correlational pattern with
the affective evaluation of family life as do fathers'.

In Table 13 Pearson correlations for all the independent
variables with family life are produced for men and women in the
Oakland and autism groups. The variables are in descending order of the
correlation coefficients for the autism women. A review of the
correlation coefficients reveals some meaningful differences. Clearly,
the variables reflecting children are more highly correlated with
the autism women's evaluation of family life than for each of the
other three groups. In addition, the nineteenth place ordering for
spouse and the twentieth placement for sexual relationship are in
marked contrast to the other three groups, for which the correlations
for these two variables were much higher. The correlation coefficient
for sexual relationships for autistic men is only at level 15, while
the Oakland groups place it within the first seven places. The
correlation coefficient for marriage is also interesting. For women
in the autism group marriage ranks tenth (.484) in order of correla-
tion and is considerably larger than the correlation for spouse (.078).
Autism men show somewhat higher correlation for marriage (.864)
for spouse (.656). Oakland men and women and autism men all show

marriage as the variable with the highest correlation with family life.

116

TABLE 13.--Pearson Correlation Coefficients (r) for Evaluations
of Family Life by Satisfaction with Resources Received
for Men and Women in Autism and Oakland Groups

 

 

 

 

How would you feel about your Autism Oakland
family if you considered only: Women Men Women Men
1. The closeness and sense
of belonging you feel? .701 .638 .704 .557
2. The love and affection
you experience? .645 .709 .710 .614
3. Your children? .619 .591 .543 .456
4. The things you do
together? .589 .774 .567 .626
5. Time you spend with your
children? .586 .427 .436 .352
6. The amount of money for
personal use? .572 .397 .313 .403
7. The mutual helpfulness
of family members? .545 .564 .463 .450
8. The way decisions are
made? .543 .626 .555 .442
9. The material goods it
enables you to own? .542 .521 .304 .343
10. Your marriage? .484 .864 .712 .695
11. The kind of communication
you have? .466 .559 .603 .615
12. The amount of respect
you receive? .460 .304 .627 .546
13. How comfortable it feels
to be at home? .458 .612 .661 .652

TABLE 13.--Continued

117

 

 

 

 

How would you feel about your Autism Oakland
family if you considered only: Women Men Women Men
14. The time you spend with

your spouse? .447 .528 .565 .617
15. How openly and honestly

you can express feelings? .401 .075 .564 .588
16. The way household work

is divided? .307 .467 .456 .496
17. The amount of time the

family spends together? .299 .527 .551 .491
18. The way money is used? .180 .424 .345 .412
19. Your husband or wife? .178 .656 .641 .670
20. Your sexual relationship? -.O46 .446 .553 .610

 

aOrdered by ranking of autism women.

118

Another apparent difference is in the .075 correlation for autism
men on the variable open and honest expression of feelings in con-
trast with autism women (.401), Oakland women (.564) and men (.588).
Overall, it appears from Table 13 that Oakland men and women are much
closer to each other's patterns and somewhat similar to autism men.
The women in the autism group show some clear differences which appear
to re—order the relative importance of children, spouse, marriage, and
sexuality.

In Table 14 a comparison is made between Pearson correlation
coefficients for autism women and Oakland women. The list is ordered
by the autism women's correlations with the relative ranking for
the Oakland groups in parentheses beside their correlations. It is
apparent again that the relative importance of children is quite
different for autism women, as is spouse, sex, comfortableness at
home, and marriage. In addition, the higher per capita income of
the Oakland group may be reflected in the low position accorded the
variables affected by material wealth.

In Table 15 the men's correlations for the two groups are
presented. These differences are not as great as the women's, though
the same differences in relative income are seen. In addition, for
the autism men the correlations for respect (.304), and expression
of feelings (.075) and sexuality (.446) are notably lower than for
the Oakland men.

Tables 16, 17 and 18 contain the highest correlation coeffi-

cients with family life for each of the four groups. Inspecting and

119

TABLE 144--Pearson Correlation Coefficients (r) for Evaluations
of Family Life by Satisfaction with Resources Received
for Women in Autism and Oakland Groupsa

 

How would you feel about your ' b
family if you considered only: Autism Oakland

 

l. The closeness and sense

of belonging you feel? .701 .704 (3)
2. The love and affection

you experience? .645 .710 (2)
3. Your children? .619 .543 (14)
4. The things you do together? .589 .567 (8)
5. Time you spend with your

children? .586 .436 (17)
6. The amount of money for

personal use? .572 .313 (19)
7. The mutual helpfulness

of family members? .545 .463 (15)
8. The way decisions are

made? .543 .555 (ll)
9. The material goods it

enables you to own? .542 .304 (20)
10. Your marriage? .484 .712 (1)

11. The kind of communication
you have? .466 .603 (7)

12. The amount of respect
you receive? .460 .627 (6)

13. How comfortable it feels
to be at home? .458 .661 (4)

TABLE l4.--Continued

120

 

How would you feel about your

 

family if you considered only: Autism Oaklandb
14. The time you spend with

your spouse? .447 .565 (9)
15. How openly and honestly

you can express fellings? .401 .565 (10)
16. The way household work

is divided? .307 .456 (l6)
17. The amount of time the

family spends together? .299 .551 (13)
18. The way money is used? .180 .345 (18)
19. Your husband or wife? .178 .641 (5)
20. Your sexual relationship? -.O46 .553 (12)

 

aOrdered by Autism women's ranking.

bNumber in parentheses represents Oakland women's rank order for

that variable.

121

TABLElEL --Pearson Correlation Coefficients (r) for Evaluations of
Family Life by Satisfaction with Resources Received for
Men in Autism and Oakland Groupsa

 

How would you feel about your

 

family if you considered only: Autism Oaklandb
l. The closeness and sense

of belonging you feel? .864 .695 (l)
2. The love and affection

you experience? .774 .626 (4)
3. Your children? .709 .614 (7)
4. The things you do together? .656 .670 (2)
5. Time you spend with your

children? .638 .557 (10)
6. The amount of money for

personal use? .626 .442 (16)
7. The mutual helpfulness

of family members? .612 .652 (3)
8. The way decisions are

made? .591 .456 (14)
9. The material goods it

enables you to own? .564 .450 (15)
10. Your marriage? .559 .615 (6)
11. The kind of communication

you have?) .528 .617 (5)
12. The amount of respect

you receive? .527 .491 (13)
13. How comfortable it feels

to be at home? .521 .343 (20)

122

TABLE 15.--Continued

 

 

How would you feel about your b
family if you considered only: Autism Oakland
14. The time you spend with

your spouse? .467 .496 (12)
15. How openly and honestly

you can express fellings? .446 .610 (8)
16. The way household work

is divided? .427 .352 (19)
17. The amount of time the

family spends together? .424 .412 (17)
18. The way money is used? .397 .403 (18)
19. Your husband or wife? .304 .546 (ll)
20. Your sexual relationship? .075 .588 (9)

 

aRank ordered by Autism Men.

b

Figures in parentheses are rank order for Oakland men.

123

TABLE 16. --Summary of Highest Pearson Correlation Coefficients for
Evaluations of Family Life by Satisfaction with Resources
Received for Women in Autism and Oakland Groups

 

 

Resource r
Autism l. Closeness/Sense of Belonging .701
2. Love/Affection .645
3. Children .619
4. Things done together .589
5. Time with Children .586
6. Money personally available .572
Oakland 1. Marriage .712
2. Love/Affection .710
3. Closeness/Sense of Belonging .704
4. Comfortableness at Home .661
5. Spouse .641
6. Respect .627

 

124

TABLE l7.--Summary of Highest Pearson Correlation Coefficients for
Evaluations of Family Life by Satisfaction with Resources
Received for Men in Autism and Oakland Groups

 

 

Group Resource r

Autism 1. Marriage .864
2. Things done together .774
3. Love/affection ’ .709
4. Spouse .656
5. Closeness/Sense of Belonging .638
6. Way decisions made .626

Oakland 1. Marriage .695
2. Spouse .670
3. Comfortableness at home .652
4. Things done together .626
5. Time with Spouse .617
6. Communication .615

 

125

TABLE 18.--Summary of Highest Pearson Correlation Coefficients for
Evaluations of Family Life by Satisfaction with Resources

Received for Men and Women in Autism Group

 

 

Group Resource r

Women 1. Closeness/Sense of Belonging .701
2. Love/affection .645
3. Children .619
4. Things done together .589
5. Time with Children .586
6. Money personally available .572

Men 1. Marriage .864
2. Things done together .774
3. Love/Affection .709
4. Spouse .656
5. Closeness/Sense of Belonging .638
6. Ways Decisions are Made .626

 

126

comparing these correlations reveals clear differences in areas of
concern.

In Table 19, the means for the variables chosen by Rettig
(1980) to most parsimoniously represent the Foa and Foa (1974) resource
classes are presented for the Oakland and autism samples. The Pearson
correlation coefficients with evaluation of family life are presented
in Table 20. Once more, the relative discounting of the importance
of material resources for a group which is somewhat more affluent is
seen in the Oakland groups. The low correlation for status/respect
with evaluations of family life is again seen for the men in the autism
group. Overall, the women in the autism group show weaker correla-
tional coefficients than the other three groups, indicating that
variables not included in this selection may be more important for
their evaluation of family life.

Tables 21 and 22 present the paired T-tests of means for the
Oakland group and the Autism group for the people and shared time
resources utilized in the regression equations. While both groups
reveal significant difference for evaluation of spouse, with the mean
for men higher in each group, the Oakland group shows a significant
difference for shared time with children, and the autism group for
evaluation of children. Except for the lowered mean for autism women‘s
evaluations of children,'Uuameans are quite similar in the parallel,
i.e. same sex groups. The time with children and time with family
are the two variables for which the means for women are higher than

those for men in both groups.

127

TABLE 19.--Means of Evaluations of Selected Resources Receiveda by
Men and Women in Autism and Oakland Groups

 

 

How would you feel about your Autism Oakland
family if you considered only: Women Men Women Men
1. Love/affection? 5.546 5.955 5.663 5.804
2. Services received? 6.091 6.409 5.963 5.996
3. Status/respect? 5.182 6.000 5.443 5.593
4. Information? 5.318 5.682 5.202 5.230
5. Money for personal use? 4.591 5.182 4.660 4.767
6. Goods? 5.136 5.500 4.951 4.983
7. Companionship? 5.046 5.182 5.340 5.231

 

aResources selected from Rettig.

128

TABLE EKL --Pearson Correlation Coefficients of Evaluations of Family
Life with Evaluations of Selected Resources Receiveda
for Men and Women by Autism and Oakland Groups.

 

 

How would you feel about your Autism Oakland

family if you considered only: Women Men Women Men
1. Love/affection? .64 .71 .71 .61
2. Services received? .46 .61 .65 .65
3. Status/respect? .46 .30 .63 .62
4. Information? .47 .56 .6O .62
5. Money for personal use .57 .40 .31 .40
6. Goods .52 .52 .30 .34
7. Companionship .45 .53 .57 .62

 

aResources identified by Rettig.

129

TABLE 21.--Paired T-Tests of Means of People and Shared Time Resources
for Men and Women in the Oakland Group.

 

 

 

Means 2—Tailed
Variable Women Men Significance
Spouse 5.5856 5.8198 *.013
Children 5.8108 5.9234 .143
Time with Spouse 5.1735 5.1872 .888
Time with Children 5.3394 5.0724 *.009
Time as Family 5.2915 5.2691 .818

 

*Significant difference.

130

TABLE 22.-—Paired T-Tests of Means of People and Shared Time Resources
for Men and Women in the Autism Group

 

 

 

Means 2-Tailed
Variable Women Men Significance
Spouse 5.5909 6.2273 *.031
Children 5.4091 5.9545 *.004
Time with Spouse 5.0455 5.1818 .633
Time with Children 5.4091 5.3636 .905
Time with Family 5.2273 5.1818 .880

 

*Significant differences.

131

Objective E

 

Explore the evaluations of specific dimensions of family
life by mothers of autistic children who work for pay out of the

home and those who do not.

Hypothese for Objective E

 

H22: Mothers of autistic children who work for pay out
of the home show the same mean evaluations of selected resources
received in the family as mothers of autistic children who do not
work for pay out of the home.

Separating the women in the autism group into two groups
based on employment status yields a group of 12 women who are employed
for pay out of the home and 8 women who are full time housewives.
With such asmall N, any hypothesis testing will rarely approach
significance. Table 23 illustrates the variables on which the
means for employed women are higher than unemployed women. The
Pooled T values and significance levels show that only affective
evaluations of sexual relationship and life-as-a-whole meet the
test of significance. It is noteworthy that the means of life-
as-a-whole are 1.370 points apart. These results are in contrast
to Jackson (1979) who analyzed the Oakland sample comparing employed
versus unemployed women. She found the Oakland women had means of
5.4 on overall life for both groups. Table 24 shows that for the
remainder of the variables, unemployed women show higher means than
do employed women. The absolute differences range from .3 to .9

with only two variables--respect/status and mutual helpfulness of

132

TABLE 23.--Summary of T-Tests of Means of Affective Evaluations of

Life-As-A-Whole, Family Life by Satisfaction with People,
Shared Time, and Resources Received; Means for Employed
Women in Autism Group Higher Than Unemployed Women in

Autism Group.

 

 

Pooled
Employed Unemployed T
Variable N = 12 N = 8 Value Significance
Life-As-A-
Whole 5.750 4.38 -2.67 * .015
Way money
is used 4.917 4.6250 - .46 .635
Material
goods you own 5.083 5.000 - .14 .891
Sexual
relationship 5.833 4.500 -2.55 * .020

 

*Significant differences

133

TABLE 24.--Summary of T-Tests of Means of Affective Evaluations of
Family Life by Satisfaction with People, Shared Time,
and Resources Received; Means for Unemployed Women in
Autism Group Higher than Employed Women in Autism Group.

 

 

 

Means Pooled
Employedi Unemployed T
Variable N = 12 N = 8 Value Significance
1. Spouse 5.167 6.000 1.38 .186
2. Children 5.250 5.500 .54 .593
3. Love/affection 5.1667 5.875 1.151 .264
4. Closeness/Belonging 5.333 5.750 .73 .475
5. Respect/Status 4.833 5.625 1.76 *.096
6. Comfortableness
at home 5.833 6.375 1.20 .245
7. Marriage 5.500 6.250 1.41 .176
8. Amount of money-
personal 4.583 4.750 .25 .805
9. Way Decisions
Made 5.167 5.375 .36 .726
10. Things done
together 4.667 5.375 1.03 .315
ll. Mutual helpfulness 4.250 5.625 2.07 *.053
12. Way housework is
divided 4.667 5.250 1.02 .320
13. Openly/honestly
express feelings 5.333 5.875 .93 .367
14. Communication 5.167 5.625 .92 .371

134

TABLE 24. --Continued

 

 

 

Means Pooled
Employed Unemployed T

Variable N = 12 N = 8 Value Significance
15. Amount of shared

family time 5.083 5.500 .85 .408
16. Shared time with

children 5.083 5.750 1.06 .305
17. Shared time with

spouse 4.667 5.375 1.06 .303

 

**Only Respect/Status and Mutual Helpfulness approach significance
level.

135

family members approaching significance. The differences in means
for spouse, marriage, and shared time with spouse are all more than
.7 points apart. Since there are significant results on the two
variables of sexual relationship and life-as-a-whole, hypothesis 22

can be rejected.

Summary of the Findings

The descriptive data for the independent variables show
that the autism group evaluated their life fairly consistently with
other studies (see Table 25). The mean for overall life 3 was 5.114
for autism women and 5.476 for autism men. Rettig (1980) found both
men and women to show a mean score of 5.3 for overall life 3; which
is similar to previous studies (Andrews and Withey, 1976; Campbell
et a1., 1976).

The mean scores for affective evaluations of family life were
5.500 for autism women and 5.909 for autism men. These results of
a higher mean for family life than for overall life are consistent
with findings in previous studies (Rettig, 1980; Campbell et a1.,
1976; and Andrews and Withey, 1976).

Feelings about marriage were highly related to evaluations
of family life for the men in the autism group (5 = .86), but were
not for women in the autism group (p = .484). In the regression
equation for the Rettig identified resources, marriage accounted for
77% of the variance in family life for autism men, but did not even

enter the equation for autism women.

136

TABLE 25 .--Summary Statistics for Men and Women in Autism Group
on Affective Evaluation of Independent Variables

 

 

 

 

Women Men
Satisfaction With Mean S.D. Mean S.D.
l. Spouse 5.591 1.777 6.227 .660
2. Children 5.409 .920 5.955 .807
3. Love/Affection 5.545 1.784 5.955 .998
4. Closeness/Belonging 5.591 1.491 6.182 .823
5. Respect 5.182 1.203 6.000 .571
6. Comfortableness 6.091 .944 6.409 .539
7. Marriage 5.864 1.361 6.136 .981
8. Money Use 4.864 1.742 5.545 .831
9. Money Available
Personally 4.591 1.968 5.182 1.775
10. Material Goods 5.136 1.552 5.500 1.881
11. Way Decisions Made 5.273 1.446 5.455 1.022
12. Things Done Together 4.955 2.141 5.500 1.405
13. Mutual Helpfulness 4.773 2.851 5.500 .738
14. Way Housework Divided 4.727 2.113 5.364 .909
15. Open/Honest Expres-
sion of Feelings 5.591 1.587 5.727 .970

16. Communication 5.318 1.465 5.682 .894
17. Time as Family 5.227 1.422 5.182 2.823
18. Sexual Relationship 5.409 1.682 5.333 2.033

TABLE 25.--(Continued)

 

137

 

 

 

 

Women Men
Satisfaction With Mean S.D. Mean 5.0.
19. Time with Children 5.409 1.872 5.364 1.957
20. Time with Spouse 5.045 2.141 5.182 2.061

 

138

Feelings about spouse were related to feelings about family
life for autism men (5 = .646) but only negligibly for women (r_= .178).
The regression equation for the people and shared time resources showed
evaluation of spouse to contribute 43% to the variance in family life
for autism men, but only added .7% to the explanation of the variance
in family life for autism women.

Further differences between husbands and wives are illustrated
by the difference in relative importance of children. Satisfaction
with children and satisfaction with shared time with children enter
the regression equation at steps 1 and 2 and account for 47% of the
variance in evaluation of family life for autism women. For autism
men, they enter at steps 2 and 3, accounting for 19% of the variance
in affective evaluation of family life.

For the autism women, the people and shared time scale
accounted for 52% of the variance in evaluation of family life. For
autism men, 82% of the variance in evaluation of family life is
accounted for by the Rettig resources.

In reviewing spouse agreement patterns, the autism couples
show the highest agreement for evaluation of children and least
agreement on evaluation of life-as-a-whole and marriage. The employed
women show significantly higher means for sexual relationship and
life-as-a-whole in comparison with unemployed women.

The hypotheses were accepted or rejected as follows:

Hypotheses l and 2 were accepted. Characteristics of the

 

sample of autism families were similar to autism families described

in the literature; and were similar to the Oakland families.

139

Hypotheses 3, 3a and 3b were rejected. Autism parents did

 

not have significantly lower mean scores of evaluation of family life,
marriage, children and spouse compared with parents of non-handi-
capped chi1dren.

Hypothesis 3c was rejected. There were differences in the
pattern of spouse agreement on evaluations of life-as-a-whole, family
life, marriage, spouse and children in the autism and Oakland samples.

Hypotheseslland 8 were accepted. Autism women's evaluations

 

of marriage and respect received did not contribute significantly
to the prediction of their evaluations of family life.

Hypotheses 5, 6 and 7 were rejected. Love and affection,

 

comfortableness at home, open and honest expression of feelings did
contribute significantly to autism women's evaluation of family
life.

Hypotheses 9-13 were rejected. Autism men's evaluation of

 

marriage, things done together, comfortableness at home, sexual
relationship, and love and affection did contribute significantly
to evaluation of family life.

,flypotheses 14-18 were rejected. Evaluation of shared time

 

with family, shared time with spouse, shared time with children,
children and spouse by men and women in the autism group showed
different levels of prediction of evaluation of family life than in
the Oakland group.

Hypothesis 19 was accepted for autism women but rejected for

 

autism men. People and shared time resources were stronger than

140

the Rettig resources as predictors of evaluation of family life for
women in the autism group. The Rettig resources were stronger pre-

dictors for men.

Hypothesis 20 was rejected. Autism women's mean evaluations

 

of overall life, family life, chi1dren, marriage, and spouse were
lower than men's but the differences were significant only for child-
ren and spouse.

Hypothesis 21 was rejected. Autism women's affective evalua-

 

tions of selected resources did not form the same correlational
patterns for evaluation of family life as did men's.

Hypothesis 22 was rejected. The mean evaluations of selected

 

resources by employed women in the autism group were significantly

different from the unemployed women's evaluations of resources.

LIMITATIONS, CONCLUSIONS, DISCUSSION
AND IMPLICATIONS

This research used a sample of families with autistic child—
ren as representative of families dealing with severely handicapped
members and compared them with the families of the Oakland Quality
of Life study to investigate parents' self-reporting of quality of
life. Overall, certain repetitive themes in the statistical results,
were found. However, conclusions drawn must be interpreted in light

of the limitations of the study.

Limitations

This research is basically a static survey design which asks
respondents to evaluate relationships and interchanges which by
definition must be dynamic. It, therefore, is reflective of the
"true" state of affairs only inasmuch as we accept the "truth“ as
what people are willing and able to report on such an instrument.
It has been hypothesized by Seashore (Jackson, 1979) that when indi-
viduals are coping with an unsatisfactory situation, they utilize the
following coping techniques to change or rationalize their situation:
repression; accommodation by changing the environment, goal reduc-
tion, cognitive distortion, resignation or withdrawal. If the
presence of an autistic child in the family is perceived to be an

unsatisfactory situation, any of the coping techniques would

141

142

tend to depress the revealed dissatisfaction with life for those
parents. Lewis et a1. (1976) describes the incongruity pattern
seen in some families where a semi-conscious, shared denial of pain-
ful realities is seen as the family attempts to deal with daily
problems. As mentioned in Chapter 1, some family workers servicing
parents of special education chi1dren (Seligman, 1970; Love, 1970;
and Graziano, 1974) have suggested that the developmental process
of a family's coping with a severely impaired member includes a
stage of denial of the problem. This process would be conceptualized
as also "blunting" the "true" reflection of parent reporting of
quality of life.

The low incidence of autism and the complex of variables
felt by the researcher to be operating in new autism programs led
to a sample which proceeded through two stages of self-selection.
As such, it cannot meet requirements for randomness, but the demo-
graphic information supported meaningful inferences to a population
of autism families described in the literature. The somewhat higher
socioeconomic level of the autism sample has been found by other
researchers (Spence, 1965; Wing, 1976; Rutter, 1978) and remains
a controversial topic that Schopler et a1. (1979) have suggested
has roots in the identification/diagnostic processes for severely
handicapped populations.

It is generally acknowledged by survey research teams that
people tend to answer in socially desirable ways and emphasize posi-

tive experiences more than the negative ones. Andrews and Withey

143

(1976) suggested that respondents' evaluations of family measures
were so positive as to be disbelieved. They suggested that the
willingness to use even the category "mostly satisfied" should suggest
serious reservations. Furthermore, Andrews and Withey (1976) suggest
that individuals themselves "add up" their joys and sorrows in
arriving at a feeling about general well-being. Therefore, sorrows
in some areas of life may be compensated for by joys in other areas.
Furthermore, parents of autistic children may be willing to reveal
more dissatisfaction with quality of family life if there are compen-
sations in other areas, or the principle of reciprocal relationships
in families might positively impact family life with positive exper-
iences from other areas. Rutter and Brown (1966) suggest that when
people know things are psychologically inconsistent, they will
attempt to believe they can be consistent.

Problems dealing with concept definitions are typical in
survey research. Since the researcher was present at the data
collection, some of these problems were identified and clarified
in ways that at least reduced the probable amount of missing data.
While the questionnaire items utilized in this analysis have fewer
ambiguous terms and phrases than some of the unanalyzed sections,
there are still problems with individual interpretations of such
terms as "respect," "comfortableness," and "mutual helpfulness."

Another limitation is presented by the data collection design
during which the researcher was present. This may have encouraged

socially acceptable responses to a greater degree than the design

144

utilized in the Oakland study. In addition, the researcher was
identified to the respondents as being formerly associated with
school services for the autistic. It is therefore suggested that
certain affective judgments the parents associate with their own
experiences with autism school programs may have mediated their
responses to the questionnaire. Finally, in most homes, a measure
of rapport and communication developed during the interview process
between the researcher and respondents. Since the level of effort
and success associated with this process cannot be absolutely equiv-
alent across all twenty-two families, it is not known how this
impacted on questionnaire responses.

The small number of respondents in the autism sample made
it difficult to reach specified levels of significance for the hypoth-
esis testing. For the regression analysis, violations of the assump-
tions of normality can be serious for small populations. However, in
each case where a regression equation was utilized, direct examina-
tion of the residuals through scatter-plots confirmed both the assump-

tions of normality and linearity.

Conclusions
The most important conclusion of the research is the repeated
proposition that mothers of severely handicapped children reveal
a different pattern of variables which are important for the evalua-
tion of family life than do fathers of severely handicapped children
or mothers and fathers of non-handicapped chi1dren. Other conclusions

are:

145

The most significant predictors of family life evaluation
for women in the autism group were: children and time
with children.

The most significant predictors of family life evaluation
for men in the autism group were: marriage, sexual
relationship, and things done together.

The people and shared time scale (spouse, children,

time with spouse, time with children, time as a family)
predicted the autism women's evaluations of family life
better than the resources identified by Rettig (1980)

for the Oakland women (marriage, love and affection,

Open and honest expression of feelings, comfortableness
at home and respect).

For autism men, the Rettig (1980) resources identified

by the Oakland men (marriage, sexual relationship, things
done together, love and affection, and comfortableness

at home) were stronger predictors of evaluation of family
life than the people and shared time scale (spouse,
children, time with spouse, time with children, time

as a family).

For men and women in the Oakland group, the Rettig (1980)
identified resources were stronger predictors of evalua-
tion of family life than the people and shared time

Y'ESOUY'CGS.

10.

11.

12.

146

Almost twice as many autism husbands and wives agree
on the evaluation of spouse in comparison to their
agreement on evaluation of life-as-a-whole.

For autism women, variables relating to children
generally replaced variables relating to spouse and
marriage in correlational and regression analysis,
compared with autism men.

The selected variables in both regression equations
accounted for significantly more variance in evalua-
tion of family life for autism men than was true

for autism women.

Autism men evaluate life-as-a-whole and family life
higher than Oakland women and men, and autism women.
Autism women evaluate life-as-a-whole and family
life lower than Oakland men and women, and autism
men.

For autism men, satisfaction with respect received
is correlated less highly with evaluation of family
life than for autism women, Oakland men, and Oakland
women.

For autism women, satisfaction with sexual relation-
ship has a low negative correlation with evaluation
of family life. Autism men, Oakland men and Oakland
women show substantial correlation coefficients for

this relationship.

147

13, For both men and women in the autism group, evaluation
of how comfortable it feels to be at home showed the
highest mean and smallest variance.

14. Autism women who work for pay out of the home show
significantly higher evaluations of life-as-a-whole and
sexual relationship in comparison to unemployed autism
women.

15. Autism women who are employed, show lower mean scores
for all other independent variables in comparison to
autism women who are not employed.

This research has identified the impact of the child variables
as being most significant for the autism women. Utilization of the
resources identified by Rettig (1980) appeared helpful in predicting
family life for men, but not as powerful for women. The results
for employed versus unemployed women are in contrast to Jackson's
(1979) findings of no significant differences for evaluation of

life-as-a-whole between the employed and unemployed Oakland women.

Discussion

 

In conceptualizing the presence of an autistic child in
a family as a negative stress with complex reciprocal qualities,
it was theorized that depressed satisfaction with spouse, marriage
and family life might result for both parents. These results suggest
that at least the overt results are admittedly different for fathers
than for mothers. While Campbell et a1. (1976) reported that feel-

ings about children and spouse contribute a major share of the

148

variance in feelings about family life, this pattern is split for
the autism sample. Thus, feelings about children explain most
of the variance in family life for women, and feelings about spouse
explain most for men. The women in the autism group thus have
a stronger relationship between evaluation of family life and what
could be anticipated to be one of the most stressful aspects of
their lives. The men are more able to evaluate their feelings about
family life by different, and supposedly, more positive criteria.
These findings repeat the Sontag et a1. (1979) results that the
Oakland women are somewhat less satisfied than men with family life
and children. Sontag et a1. (1979) also reported that women, more
often than men saw their children as an extension of themselves and
a hope for the future. When at least one child is autistic, a
mother may experience a lowering of hopes for the future. Since
more women than men in the Sontag et a1. (1979) study reported
problems with children, and Lewis et a1. (1976) describes the wife-
mother as a barometer of stress or problems in the family system,
these results are consistent with previous research findings. In
addition, Lewis et a1. (1976) learned that styles of family function-
ing were most accurately studied by observation, but the presence of
problems within the family is most often ascertained by interviewing
individual members.

In a discussion of the hypothesis testing, it is important
to note differences that are probably due in part to the limitations

inherent in a small sample. While evaluation of spouse and marriage

149

made negligible contributions to the regression equations for women's
evaluation of family life, these two variables rank second and third
in the mean scores of evaluation for women (marriage = 5.864, spouse
= 5.591). They are ordered by men as the second and fourth highest
means (spouse - 6.227, marriage - 6.136). For both men and women,
therefore, the mean scores for evaluation of spouse and marriage
are high, but women find that their evaluation of family life is
more linked to their life with children. Since the spouse consensus
pattern was highest for autism husbands and wives on their evaluations
of spouse, there would appear to be reciprocal agreement in their
feelings about their spouse. 60% of the autism couples agreed on
their evaluation of each other. Since only one of these couples
did not choose "pleased" or "delighted," these would appear to be
very positive marriages. Booth and Welch (1978) suggest that spousal
consensus is a complex construct which has not been adequately
researched, but in which stress may be implicated as an independent
variable. It is theorized that prolonged stress reduces the amount
of consensus found in couples.

The patterns of variance seen in the means of the men's
and women's group are more revealing. The women generally show
greater variance for each of the variables with four (ways decisions
are made, things done together, way housework is divided, and time
with spouse) showing standard deviations greater than 2.1. The
variance for men is not as great, though for them three variables

(time as a family, sexual relationship, and time with spouse) show

150

standard deviations greater than 2.0. A larger sample might clarify
patterns of variance in the sample. One wonders if the Andrews
and Withey (1976) suggestion that joys in one area of life may compen-
sate for sorrows in another area is valid when evaluations of children
and spouse are considered. Women in the autism group evaluate life-
as-a-whole lower than do men (mean for women is 5.114, men = 5.909)
which would suggest the power of their evaluation of children. Love
(1970) and Graziano (1974) have suggested that mothers, who have
more intimate knowledge of handicapped children in the family, are
more accurate in their assessment of the child's true abilities
than are fathers.

The findings for employed mothers of autistic children are
interesting. In general, they show less satisfaction with most
of the variables than do unemployed women, yet significantly higher
satisfaction with life-as-a-whole and sexual relationship. This
may be a clear example of the ”compensatory joys" theory proposed
by Andrews and Withey (1976) or a greater negativism about family
life as they carry a dual role. In consideration of their evaluation
of sexual relationship more Positively, however, a third explanation
may be appropriate. If their job is able to be a source of satis-
faction and accomplishment to them, they may more confidently reci-
procate in the sexual relationship with the confidence to enter
this love/service exchange described by Rettig (1980). The sexual
relationship may not be as strong a barometer of the family relation-

ships for employed women as it is for the unemployed women.

151

These research findings appear to support the conceptual
framework that a severely handicapped child does impact on an

individual family member's satisfaction with family life. The

 

individual parent reflects this impact in ways which are reflective
of their prioritizing of areas of concern and their fund of human
and material resources. The findings suggest that employed women
participate in exchanges with work systems external to the family
which provide them resources to increase their satisfaction with
life-as-a-whole. This result supports the "compensatory joys”
concept of Andrews and Withey (1974) at least for the autism women
in this sample.

An accurate understandings of ways in which the handicapped
child influences specific exchanges demands sensitive interpretation
of the data. For example, autism men and women show quite different
correlations between evaluation of spouse and satisfaction with family
life, but both autism men and women show a high degree of satisfaction
with their spouse. Drawing meaningful inferences from either one of
these results in isolation would be an inaccurate reflection of these
parents' evaluations. Thus the dynamic and specific nature of resource

exchanges and evaluations within the family is confirmed.

152

Implications

Overall, it is noteworthy that there appears to be a great
deal of positivism and strength among the autism families. Evalua-
tions of variables were not remarkedly different from the Oakland
group, but the significant findings contribute to an understanding
of the selection of criteria by which they evaluate certain
domains of life. Mothers appear more constantly cognizant of child
needs in their evaluations of family life. The long-term impact
on the self-esteem and mental health of a women who are responsible
for the majority of care of severely handicapped children is an
important area of investigation. At least three of the respondent
families made reference to a "crisis of role behavior" wherein mothers
evidently demanded and received much greater child care input from
fathers than had previously been the norm in their families. In
addition, included among the 44 autism parents were 5 step parents
who had knowingly married their spouses with knowledge of the autistic
child. These individuals could constitute an interesting sample
for ethnographic research efforts which might explore the relation-
ship between altruistic behavior and quality of family life in families
with severely handicapped individuals. Since this behavior is not
rewarded in the marketplace, how and why do families sustain it?

There was some evidence that families tried not to conceptua-
lize themselves as "different" or as needing to use a different
set or prioritizing of values in family decision making. It was

striking that only one of the twenty-two families made any overt

153

attempts to have the researcher perform some child care while the
parents completed the questionnaire. In spite of the investigator's
clear offer and description of her familiarity with autism, the
families really "took care of their own". Most of the autistic
children seen were engaged in stereotypical activities, many involving
basic physiologic reward systems like rocking in front of a warm
air register. While at school, such behaviors might be interrupted
and discouraged, at home they provided some "organized relief" for
families. In the striking aloneness of the autistic child is sug-
gested one option for normalizing the "rest of family" through
studied ignoring or compartmentalization. This tendency is not
wholely appreciated by professionals working in autism; they tend
to see the autistic child as a focus for organization and planning.
Thus they often try to help a family better understand or manage
their autistic child and attempt to provide alliances for families
to meet other parents faced with the same handicap. Yet the reality
nay be that the push toward normalizing family life might preclude
concentration on linkages with other families of autistic children.
Furthermore, the intensity of the stress accounted for by an autis-
tic child might make linkages with more similarly stressed systems
not growth supporting for child or parent. These relationships
have obvious implications for social policy and deserve more con-
centrated investigation.

Many professionals working in service to autism make valiant

efforts to contact fathers and believe that only working with mothers

154

is supporting a sexist bias of services. Yet this research effort
would suggest that it is indeed the women who are most impacted

by the autistic child and much more of their family resources are
linked to her care. In addition, the correlational analyses and
regression equations often revealed the autism men to be more like
the Oakland women than like their wives or the Oakland men. Thus
the presence of a severely handicapped child in their family has,
for the autism men, encouraged a more "female" prioritizing of vari-
ables of concern. The investigation of this phenomena might reveal
interesting strengths in the development of a more "balanced" per-
sonality structure that combines both expressive and instrumental
roles more comfortably than a traditional male role.

Obviously, longitudinal or at least,cross sectional analyses
would be helpful to better understand the developmental process
of these reciprocal relationship as the child and family mature.
Agencies identified as supports for families with severely handi-
capped members may need to develop sensitive processes for evalua—
ting an individual family's choices about their own priorities for
quality of life for themselves and their autistic child.

In a study which compared the "problem prioritizing" lists
of families with institutionalized severely handicapped children
with families whose severely handicapped children remained at home,
Skelton (1972) found the intriguing result that families of the
institutionalized group placed more concern in areas relating to

family needs and goals, while families whose children remained at

155

home tended to concentrate on the importance of achieving specific
goals for/with the child. Perhaps this information is a reflection
of a decision process which involves the relative importance of
individual versus group goals as a family faces the possibility

of institutionalizing their child. The maintenance of the child
within the family may require a concentration on his/her needs to

focus resources.

Beyond Hypotheses Testing

 

It is obvious that these twenty-two families represent unique
systems; awesome in the particularistic combining of resources to
accomplish their goals. Upon reflection of experiences with these
families, some hints from the literature seem confirmed; new questions
are intriguing.

Family life cycle stage would appear important to family
role expectations and assignments. Older couples with dependent
adolescents seemed to feel the dissatisfaction with confinement,
life limitations, and too much concentration on the parental roles.
Also the evident disparities of their children may contribute to
previously unexpressed realization of the bleak prognosis.

It would appear that the years of late latency and early
adolescence are crucial in terms of the consideration to institutiona-
lize. The society-family role of a charming young deviant can no
longer be assigned a son or daughter entering adolescence. Some
autistic adolescents become more aggressive or are found to exhibit

seizures and these present physical dangers and proof of neurological

156

damage which are frightening to parents. Other adolescents may
become calmer and less hyperactive than they were in early childhood,
but the parent store of caring and protecting may be "burned out,"

to use Sullivan's (1979) term. There is no dramatic event, just

the slow arrival at the recognition point that an extreme concentra-
tion of resources in their own child may not be rewarding.

As a group, the working mothers subjectively appeared more
satisfied, less guilt ridden, and obviously enjoying more spouse
support with the care of the autistic child. It appeared that mothers
who had been most active in the parent groups were those who did
not work; they may present a group with very few other resources.
This phenomenon of intensive experience in one limited area of advocacy
may help explain difficulties this group has with advocacy in total.
The resource store of a broader, more generalized experience with
system relationships may be missing, especially among the female
leadership.

Mothers who were most positive appeared to have taken asser-
tive, self-actualizing steps for themselves; this came at different
stages for different women. As older normal children grew up and
left the home, a mother left with the care of an autistic son or
daughter must surely feel a loss of role functioning, a narrowing
of her focus and responsibility back to concentration on deviancy.
Not only does she feel the abandonment of help in child care, she
feels less involved in the normal range of family life.

Economic resources were certainly significant; they provided

more opportunities but they also were clearly disappointing by virtue

157

of what they could not buy. Most families were doing most of their
own child are; no one could afford to independently institutionalize
their child. If the family's means were limited, it was most satis-
fying to have lower expectations from life.

Many families could reflect on times being "better" or "worse"
than they were at the time of the interviews. It would be fruitful
to look at these comparisons in light of what resources the family
utilized in "worse" times and what were the costs. These may prove
to be patterns that are in contrast to other normal family histories,
or may be extremes of the same stages.

It is obvious that families really did not feel much impact
from the school program or personnel. Beyond the initial uncertain-
ties and trauma of assisting in program establishment, it would
appear that schools have not significantly impacted on these families.
Numerous references were made to disagreements about curriculum
goals and frustrations with school/home communication. Parents
felt each report letter sounded like every one before it; "I don't
need to read them anymore." Obviously, part of these feelings are
a reflection of the fact that autism is a chronic disability; these
children change very slowly. However, it also may be that well
functioning families pass through a stage of intense school advocacy
and involvement and then grow beyond the need to concentrate energy
there. It would appear that the families in which both wife and
husband possessed confidence, reflective abilities, and positive

regard for themselves and each other, were able to strengthen their

158

marital relationship and create particularistic natural support
systems that were not defined by "deviancy membership." Thus the
services attached directly to school programs might be viewed in

a more developmental framework. New autistic students need for
their families to obtain human support and information regarding

the disability from other parents who have survived the initial
definition/acceptance crises. Beyond that, school personnel should
facilitate information for the coordination of other services such
as respite care, social services benefits and funding sources for
living environments. However, these activities should be in such
form that they can be utilized by individual families or small groups,
and continually updated. It should be perceived that families of
autistic children might be best served by learning of the unique
ways other families made decisions to support growth in each family
member while making an appropriate decision about the care of the
autistic child. It is not necessary to "major" in autism to be
responsible to an autistic son or daughter. When there were no
school programs, parents may have felt that concentration was neces-
sary; the parents who clearly expressed anger and grief that the
"spirit" has died from the parent group may not have developed other
systems of social support and nurturance for themselves. For older
parents with difficult to manage children, this isolation is a very
real crisis which is affecting quality of family life. The fact
that there were some clear examples of well functioning step-parent

families may illustrate the importance of "family decision

159

opportunities" where change can be facilitated and a more satisfying
quality of life obtained by the infusion of new resources. If schools
and social service agencies could be more attuned to family crises
which involve potential opportunities for new adaptability, the
appropriate human services might be prepared to cooperate with fami-

lies in facilitating choices which are satisfying.

APPENDICES

160

NATIONAL SOCIETY FOR AUTISTIC CHILDREN
DEFINITION OF THE SYNDROME OF AUTISM

 

 

Submitted by Edward R. Ritvo, M.D. and B. J. Freeman, Ph D.
in July, 1977 and approved by the Board of Directors and the Pro-
fessional Advisory Board.

1. Essential Features: Autism is a behaviorally defined
syndrome. The essential features are typically manifested prior to
30 months of age and include disturbances of: (1) developmental
rates and/or sequences, (2) responses to sensory stimuli, (3) speech,
language, and cognitive capacities, and (4) capacities to relate to
people, events and objects.

 

1. Disturbances of developmental rates and sequences: Normal
coordination of the three developmental pathways (motor,
social-adaptive, cognitive) is disrupted. Delays, arrests,
and/or regressions occur among or within one or more of
the pathways: (a) within the motor pathway: for example,
gross motor milestones may be normal while fine motor
milestones are delayed; (b) between pathways: for
example, motor milestones may be normal while social-
adaptive and cognitive are delayed; (c) arrests, delays
and regression: for example, motor development may be
normal until the age 2 when walking stops; (d) some
cognitive skills may develop at expected times while
others are delayed or absent; imitative behavior and/or
speech may be delayed in onset until age 3, followed by
rapid acquisition to expected develOpmental level.

2. Disturbances of responses to sensory stimuli: There may
be generalized hyper-reactivity or hypo-reactivity, and
alternation of these two states over periods ranging from
hours to months: For example, (a) visual symptoms:

These may be close scrutiny of visual details, apparent
non-use of eye contact, staring, prolonged regarding of
hands or objects, attention to changing levels of illumi-
nation; (b) auditory symptoms: These may be close atten-
tion to self-induced sounds, non-response or over-response
to varying levels of sound; (c) tactile symptons: These
may be over- or under-response to touch, pain, and temp-
eratures, prolonged rubbing of surfaces, and sensitivity
to food textures; (d) vestibular symptoms: These may be
over- or under-reactions to gravity stimuli, whirling
without dizziness, and preoccupation with spinning
objects; (e) olfactory and gustatory symptoms: These
may be repetitive sniffing, specific food preferences,

161

162

and licking of inedible objects; (f) proprioceptive
symptoms: These may be posturing, darting-lunging move-
ments, hand flapping, gesticulations and grimaces.

Disturbance of speech, language-cognition, and nonverbal
communication: Symptoms may include: (a) speech: for
example, mutism, delayed onset, immature syntax and
articulation, modulated but immature inflections; (b)
language-cognition: for example, absent or limited
symbolic capacity, specific cognitive capacities such

as rote memory and visual-spatial relations intact with
failure to develop the use of abstract terms, concepts,
and reasoning; immediate, delayed, negative echolalia with
or without communicative intent; non-logical use of con-
cepts; neologisms; (c) nonverbal communication: for
example, absence or delayed development of appropriate
gestures, dissociation of gestures from language, and
failure to assign symbolic meaning to gestures.

Disturbances of the capacity to apprOpriately relate to
people, events, and objects, manifested by failure to
develop appropriate responsivity to people and assign-
ment of apprOpriate symbolic meaning to objects. For
example, (a) Pe0ple: absence, arrests and/or delays of
smiling response, stranger anxiety, anticipatory response
to gestures, playing "peek-a-boo", playing "patty-cake",
and waving "bye-bye", reciprocal use of eye contact and
facial responsivity, and appropriate reciprocal responsive-
ness to physical contact; failure to develop a relation-
ship with significant caretakers or excessive reliance

on caretakers. For example, caretakers may be treated
indifferently, interchangeable, with only mechanical
clinging, or with panic or separation. Cooperative play
and friendships (usually appearing between two and four)
may not develop. Expected responses to adults and peers
(usually appearing between five and seven) may develop,
but are superficial, immature, and only in response to
strong social cues. (b) Objects: absent, arrested
and/or delayed capacities to utilize objects and/or toys
in an age-apprOpriate manner and/or to assign them symbo-
lic and/or thematic meaning. Objects are often used in
idiosyncratic, stereotypic and/or perserverative ways.
Interference with this use of objects often results in
expressions of discomfort and/or panic. (c) Events:
There may be a particular awareness of the sequence of
events and disruption of this sequence may result in
expressions of discomfort and/or panic.

163

II. Associated features: Associated clinical features vary
with age and ihCTUde other disturbances of thought, mood, and behavior.
Mood may be labile; crying may be unexplained or inconsolable; there
may be giggling or laughing without identifiable stimuli. Delusions
and hallucinatory experiences have been reported. There may be a
lack of appreciation of real dangers, such as moving vehicles and
heights as well as inappropriate fears. Self-injurious behaviors
such as hair pulling and hitting or biting parts of the body, may be
present, and stereotypic and repetitive movements of limbs or the
entire body are common.

 

Current research estimates are that approximately 60 percent of autis-
tic children have measured I.Q.'s below 50; 20 percent between 50-70,
and 20 percent of 70 or more. The majority show extreme variability
of intellectual functioning on formal 1.0. testing. They perform
poorest on tasks requiring abstract thought, symbolism or sequential
logic, and best on those assessing manipulative or visual-spatial
skills and rote memory.

Recent studies indicate that the incidence of EEG abnormalities
increases with age as does the possible onset of seizures.

III. Impairment: The syndrome is severely incapacitating.
Periodic medical, neurological, psychological, educational, and
behavioral reassessments are necessary. One must monitor the course
of the syndrome to keep treatment planning apace with physiological
and behavioral changes. Special educational facilities are almost
always required. Behaviorally structured, functional, individualized
programs have been demonstrated to be most helpful. Counseling
families regarding total living planning is often desirable. Indi-
vidual supportive psychotherapy and symptomatically targeted pharma-
cologic therapy may enhance social-adaptive functioning in selected
persons. The severe form of the syndrome may include the most
extreme forms of self-injurious, repetitive, highly unusual and
aggressive behaviors. Such behaviors may be persistent and highly
resistent to change, often requiring unique management, treatment,
or teaching strategies.

 

IV. Age of onset: The exact age of onset is unknown, but
symptoms have been reported and observed during the first months of
life. Families may be unaware of early symptoms until the child
fails to pass major developmental milestones (i.e., onset of walking,
speech, socialization with peers). They may then date the onset of
the syndrome to these missed milestones, whereas careful history
taking may reveal that subtle symptoms were present earlier.

 

V. Etiolo : The symptoms are best explained as expressive
of a physical dysfunction within the central nervous system (CNS) -
the exact nature and type of which has yet to be determined. This
physical dysfunction of the CNS occurs independently or in association

164

with other disorders which directly affect the central nervous sys-
tem (i.e., maternal rubella, PKU, Down's Syndrome, epilepsy). In
such cases, the diagnosis of Autism is made on Axis One, and the
coexisting organic condition coded on Axis Three.

VI. Incidence and Sex Ratio: The syndrome has been identi-
fied in all parts of the worldi It is very rare, with an incidence
of approximately 4 or 5 per 10,000 births. It is found four or five
times more commonly in males.

 

VII. Complications: Major complications are self-induced
physical injuries, infections related to improper hygiene, dental
problems related to persistent bruxism, and physical injuries due
to inadvertent exposures.

 

VIII. Differential diagnosis:

1. Mental retardation, etiology unknown and known:
Here developmental delays usually occur in all areas,
and developmental sequences (motor, social, and
cognitive) remain coordinated. Responses to sensory
inputs, people and objects, and speech and language
develOpment are appropriate to the overall develop-
mental level of cognitive functioning.

2. Specific sensory deficits (e.g., deafness, blindness):
Here compensatory behaviors may be confused with
symptoms indicative of autism (e.g., hyperreactivity
to auditory, proprioceptive and tactile stimuli in
blind children (i.e., blindisms); hyperresponsivity
to visual, proprioceptive (i.e., head shaking), and
tactile stimuli in deaf children). When auditory
and visual deficits are accompanied by mental retar-
dation, speech, language, and the ability to relate
to pe0ple and objects are appropriate to the overall
developmental level of cognitive functioning.

3. Congenital, developmental, and acquired disorders
of central processing of language (aphasia): Here
disturbances in language development and central
processing are not accompanied by disturbances of
responses to sensory inputs, disassociation of other
developmental courses (motor, social), relatedness
to pe0ple and objects. Aphasics may imitate and use
gestures and other means to communicate symbolic
content. If these disorders are accompanied by
mental retardation then it must be assessed indepen-
dently of the disturbances of central processing
of language.

165

4. Sequelae of physical or psychological trauma (e.g.,
syndromes previously described as hospitalism, mat-
ernal deprivations, anaclitic depression, sequelae
of a chronically traumatizing environment): Here
syndromes include failure to thrive, infantile apathy
and withdrawal, physical illnesses secondary to mal-
nutrition or toxin ingestions and physical abuse,
specific psychological fixations (psychogenic psycho-
ses, severe neuroses, pathological character develOp-
ment), and all degrees of mental retardation. The
pattern of symptoms and develOpmental delays are
specific to the syndromes described, are related to
Specific etiologic factors in psychological and
social environments, and respond to specific therapies
if instituted before permanent changes have resulted.

5. Schizophrenia, childhood type: Here, the disorder
is characterized by the presence of a thought dis-
order (see the definition of thought disorder in the
American Psychiatric Association's Diagnostic Stand-
ards Manual, Third Edition). Certain persons with
the syndrome of autism as defined in DSM category
299.00 also may fit the criteria for childhood schizo-
phrenia, particularly at a later age (ages 5-12).
In this case, both diagnoses should be listed so that
subsequent researchers can objectively test the two
main hypotheses regarding the relationship between
these two syndromes, i.e., autism is the earliest
form of schi20phrenia as manifested in late child-
hood or early adulthood or that autism and schizo-
phrenia are distinct syndromes with different etio-
logies, family histories, and courses.

 

 

6. Degenerative organic brain syndromes (e g., Schilder's
Disease, Heller's Syndrome) with or without mental
retardation: Here the clinical course is characterized
by progressive regressions in all or some areas of
development (motor, social-adaptive, and cognitive).
In the early stages, these regressions may mimic
symptoms indicative of autism but are distinguishable
by their relatively specific times of onset, charac-
teristic signs and symptoms on neurological, phycho-
logical, and cognitive testing, and unremitting
deteriorating course.

IX. Predisposing factors: None known.

 

X. Family factors: None known. The syndrome has been iden-
tified in all parts of the world. Recent studies have revealed no
correlation between autism and parental psychopathology.

 

166

XI. Operational criteria: A, B, C, D, and E are required.

 

A.
B.
C.
D

E.

Signs and symptoms present prior to 30 months of age.
Disturbances of develOpmental rate and/or sequences.
Disturbances of responsiveness to sensory stimuli.
Disturbances of speech, language and cognitive capa-
cities.

Disturbances of relation to pe0ple, events and
objects.

1Edward R. Ritvo and B. J. Freeman, "National Society for
Autistic Children Definition of the Syndrome of Autism," NSAC
Newsletter, May 1978, pp. 16-19.

 

MICHIGAN STATE UNIVERSITY

 

COLLEGE OF EDUCATION EAST LANSING - MICHIGAN - 4882-1
DEPARTMENT OF ELEMENTARY AND SPECIAL EDUCATION

NEEDS ASSESSMENT SURVEY FOR
PARENTS OF AUTISTIC CHILDREN

--WHY A "NEEDS ASSESSMENT?"

With the apparent growing concern and frustration between parents and
service agencies of the population of autistic children, we have
developed a needs assessment survey. The survey consists of a series
of questions related to issues involved with home, school, and sup-
portive services.

--HOW WILL THIS SURVEY BE CONDUCTED?

The initial step will be to contact a sample of parents whose autis-
tic children currently attend public schools in Michigan and request
that they complete a comprehensive questionnaire. We plan to reach
these parents with the assistance of the schools and agencies who
serve autistic children, and by meeting with several local NSAC
chapters. After we have received these initial responses, we will
contact a random follow-up group of parents who indicate that they
would be willing to participate in a personal interview. All infor-
mation gathered will then be organized for study.

-—HOW WILL THE SURVEY INFORMATION BE USED?

The completed needs assessment should result in a compiled summary

of those needs that parents feel are still lacking, and those needs
they feel are being met by those agencies that service autistic Child-
ren. The finished study which would result will become available for
any group or persons' use. The study results could hopefully be used
by professionals in planning program goals, and could be used by
parent or advocacy groups as a basis for obtaining more effective
services for autistic children and their families.

167

GLOSSARY OF TERMS

 

This short glossary has been included as a reference for your use.
If you feel that a term has been omitted which would be helpful to
you, please call us.

AUDIOLOGICAL TESTING — Professional testing, usually with specialized
instruments, to determine the presence and extent of hearing impair-
ment in a child.

BIOCHEMICAL THERAPY - The therapeutic use of drugs, supervised by a
medical doctor, which aims to remediate a physically caused problem.

GROUP HOME - A home-like dwelling in a residential community super-
vised and run by a public service agency for the purpose of providing
a more normal living environment for handicapped persons.

NON-VERBAL - A person who does not use verbal language as a systematic
means of communicating with other persons.

RESPITE CARE - Supervision and care of handicapped persons, usually
by a public service agency, with the purpose of providing relief for
the handicapped person's family. This relief may extend for several
hours, or up to several weeks.

SHELTERED WORKSHOP - A commercial establishment maintained for the
purpose of providing handicapped persons with an environment in which
they may receive wages and work successfully. These are usually run
by a public service agency.

168

MICHIGAN STATE UNIVERSITY

 

COLLEGE OF EDUCATION EAST LANSING - MICHIGAN - 48824
DEPARTMENT OF ELEMENTARY AND SPECIAL EDUCATION

NEEDS ASSESSMENT SURVEY FOR
PARENTS OF AUTISTIC CHILDREN

We appreciate your taking the time to complete this assessment of
your attitudes and feelings toward the services your child has received.

With your help we plan to bring the concerns of parents to service
agencies in a clear and concise way. All reports on this survey
will exclude the names of any participants. Your reply will remain
absolutely CONFIDENTIAL.

Return of this questionnaire by April 1, 1979 would help us a great

deal. A stamped, addressed envelope is enclosed for your convenience.
Your cooperation is greatly appreciated. Thank you!

I. GENERAL INFORMATION

 

l. Birthdate of autistic child / /

 

 

 

 

 

 

 

Hay mo. yr.
2. Place of autistic child's birth 1
city state
3. Does your autistic child have any other handicapping
conditions that you are aware of? 3
4. Current county of residency 4
5. Birthdate of parents: Father / / 5
33y mo. yr.
Mother / / 6
day mo. yr.
6. Your distance from the nearest family member:
(check one) 7
l to 5 miles 20 to 50 miles
5 to 20 miles 50 to 100 miles

Over 100 miles

169

170

 

7. Number of Children in your family 8
Ages of Children: 1) years 9
2) years 10
3) years 11
4) ____years 12

8. Is your autistic child verbal or non-verbal?
(check one) 13
verbal non-verbal 14

*We will begin making randomly picked telephone interviews during
the month of April, 1979.

We will only be calling consenting parents.

 

If you consent to a telephone interview, we will need the
following optional information:

Parents' names: Father

 

Mother

 

Telephone number: ( ) -
area

 

When would be the best time to call?
days weekends

evenings other

Some items assume more than one child in a family. If you have only
one child please complete these items as if you had other children.

171

II. AREAS OF CONCERN

 

The following section consists of statements concerning the quantity
and quality of services provided for your child. Also included are
statements which allow us to assess your feelings about these ser-
vices.

In SECTION A, a line of boxes will follow each statement. Check the
box which corresponds to the way you feel about that statement.

(see EXAMPLE)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

STRONGLY STRONGLY

EXAMPLE AGREE DISAGREE
Example 1. Playing in the

snow is a good /

experience for

a child.
Example 2. My child should

play with matches /

 

 

 

 

 

 

when alone.

In Example 1 we agreed that playing in the snow is a good
experience for a child. We therefore Checked a box close
to "strongly agree."

In Example 2 we did NOT agree with a child should play with
matches when he is alone. We therefore checked a box close
to the "strongly disagree."

Please complete each of the following questions in the same
way.

STRONGLY STRONGLY
SECTION AGREE DISAGREE

 

1. We believe that our other
children should help in
the care of our autistic
child.

 

 

 

 

 

 

 

 

 

 

 

2. We currently have avail-
able to us adequate infor-
mation concerning bio-
chemical therapies.

 

 

 

 

 

 

 

 

 

10.

11.

12.

We would like to see more
group homes for autistic
persons.

We believe that the public
should have more opportunity
to learn about autism.

Our autistic child prevents
our home from running
smoothly.

We found it was necessary
to go to many professionals

172

STRONGLY
AGREE

STRONGLY
DISAGREE

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

before we had a clear picture

of our Child's impairment.

We are presently getting
enough time to ourselves
away from our autistic
child to satisfy us.

We found it hard to obtain
information concerning
financial benefits for our
autistic Child.

Our other children feel we
spend too much time with
our autistic child.

We feel that schools are
beginning to program
adequately for autistic
children in our area.

We believe that competent
audiology testing is readily
available

to us.

We believe that competent
visual testing is readily
available to us.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

13.

14.

15.

16.

17.

18.

19.

20.

21.

22.

Our relatives give us a
great amount of emotional
support with regard to
our autistic child.

We feel that our family
doctor is aware of the
problems of autistic
children.

We feel that it is impor-
tant to belong to a parents'
organization.

We feel that parental
organizations are active
in improving services for
autistic children.

We feel comfortable going
to the teaching staff in
our autistic child's pro-
gram with any concerns we
might have.

We have in the past received
a very adequate amount Of
respite care.

We are currently receiving

a very adequate amount of
respite care.

We feel that our family has
been strengthened by our
child's handicapping condi-
tion.

We feel that community ser-
vice agencies are able to
effectively program for
autistic children.

We think that verbal autis-
tic children have a better
chance in the world than

non-verbal autistic children.

173

STRONGLY
AGREE

STRONGLY
DISAGREE

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

23.

24.

25.

26.

27.

28.

29.

30.

31.

32.

We would like to become
more directly involved
in our child's education.

The education laws of the
State of Michigan that
effect our child are fair
and relevant to his/her
needs.

Elected representatives
are responsive to the needs
of autistic children.

We feel that the teachers
that are teaching our
autistic child have been
very well trained.

As parents, we both have
similar philosophies about
how to raise our autistic
child.

We know how to obtain
information on current
legislation pertaining
to autistic children.

We are currently receiving
as much information from
the school concerning our
autistic child as we would
like.

We generally accept what
psychologists tell us about
our autistic Child.

We generally feel that psy-
chologists have been com-
petent in their diagnoses of
our autistic child.

Our autistic child's current
school program provides
strong language instruction.

174

STRONGLY
AGREE

STRONGLY
DISAGREE

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

33.

34.

35.

36.

37.

38.

39.

We feel that we would
benefit from more pro-
fessional help in com—
municating with our
autistic child.

We generally feel that
social workers are flex-
ible enough to work with
autistic children and
their families.

We feel comfortable
enough with our social
worker to contact him/

her in a crisis situation.

We would like to see more
sheltered workshops for
autistic persons.

There is a need for pre-
vocational programs for
autistic students.

Autistic students can
benefit from vocational
education.

There are sufficient
vocational education
programs now which can
meet the needs of autis-
tic students.

175

STRONGLY
AGREE

STRONGLY
DISAGREE

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

176

In SECTION B, a line of boxes will again follow each statement.

Please note that the scale runs from RARELY to OFTEN, with the
extreme boxes being labeled NEVER and CONTINUOUSLY.

 

 

 

 

 

 

 

 

 

 

 

 

(see EXAMPLE) 5
g
3
Z
a H
Lu 1—
> Z
EXAMPLE "2' RARELY OFTEN8
Example 1. My child finds /
pennies on the
floor.
Example 2. A ghost was seen
in our house. /

 

 

 

 

 

 

 

 

 

 

In Example 1 we felt that our child OFTEN finds pennies on
the floor. We therefore checked a box close to "OFTEN."

In Example 2 a ghost has NEVER been seen in our house. We
therefore checked the box under "NEVER."

Please complete each of the following questions in the same
way.

CONTINUOUSLY

NEVER

SECTION B RARELY OFTEN

 

40. Information has been '1
easily attainable from

 

 

 

 

 

 

 

 

 

service agencies to
help with our autistic
child.

 

41. Our other children help
in the care of our

 

 

 

 

 

 

 

 

 

 

autistic child.

 

42. The school makes a con-
certed effort to help

 

 

 

 

 

 

 

 

 

 

us plan for our autistic
child at home.

 

lsxizsztzssztf“ 1 F I I 1 1 1 l 1

 

44.

45.

46.

47.

48.

49.

50.

51.

52.

We have found that pro-
fessionals will refuse
to service our autistic
child and send us to
someone else.

Teachers keep us informed
about our autistic child's
progress.

Our other children get
upset with our autistic
child.

Our family freely shares
concerns and frustrations
encountered in living with
our autistic Child.

We are consulted with
about the nature of our
autistic child's educa-

tional plan by his teacher.

Our neighbors are suppor-
tive of our situation with
our autistic Child.

We allow our autistic
child to do as much for
him/herself as possible.

We have had contact with
a professional advocacy
organization.

Our other children are
ridiculed about their
autistic sibling.

177

NEVER

RARELY

OFTEN

CONTINUOUSLY

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

178

Thank you so much for completing our survey!

If you have any further questions, or desire any information whatso-
ever, please contact us at:

David Paige and Linda Petersen
c/o Dr. Ronald Wolthuis

346 Erickson Hall

Michigan State University

East Lansing, Michigan 48824

(517) 355-6549

Number

 

Date

 

PARENT QUESTIONNAIRE ON QUALITY OF LIFE

179

January, 1980

Dear Parent,

Your agreement to participate in this study investigating the rela-
tionships between quality of life and having an autistic child in
the family is gratefully appreciated.

A great deal has been written about parents and families of autistic
children which has not asked questions directly of those families.
This study will ask about various aspects of your life such as Spare
time activities and neighborhood, and many questions about your
family life. As I explained on the phone, this information will be
used for comparison to families who do not have handicapped children
to see if we can understand these differences better. It is your
experience and information that is valuable. There are no "wrong"
answers.

I will come to your house at on

with a questionnaire for each of you. I will be glathO superste
or play with your autistic child while you complete the question-
naire.

 

 

By signing the consent form, you agree to the confidential utiliza-
tion of this information for purposes of research and study. No
individuals will be identified. A report which summarizes the find-
ings will be sent to you upon completion of the study.

If you have any questions or concerns, do not hesitate to call me
at home (517-355-5861) or at the office (517-355-4545). I look
forward to meeting with you.

Sincerely,

“MW-96%

Mary M. Gray
Graduate Student
Family Ecology

180

Consent Form

We, the undersigned willingly Consent to participate in this
study about quality of life in families with autistic children. We
do so understanding that our names will in no way be identified with
the answers we have given and we reserve the right to withdraw from
this study at any time.

The goals of the research project have been explained to us.
We feel that our participation will support research efforts to
understand how the quality of family life is impacted by an autistic
child.

We desire to participate in this study and consent and agree.

 

 

Wife's Signature Date Husband's Signature Date

 

Street City, State Zip

I, the undersigned student researcher, guarantee complete
anonymity to the persons whose signature appears above. I will be
happy to answer any questions at 517-355-5861 or 517-355-4545

Mary McPhaillGray
Ph.D. Student
Family Ecology

181

182

GENERAL DIRECTIONS

 

Please read the directions at the beginning of each section before
answering the questions. It is very important that you answer each
question as carefully and as accurately as you can. Be sure to
respond to all the questions on each page. Both you and your spouse
are asked to complete separate questionnaires. Please do not dis-
cuss your answers before both Of you have finished the entire
questionnaire. When you have completed the questionnaire, return

it to the manila envelope provided.

YOUR FEELINGS ABOUT LIFE CONCERNS

 

In this section of the questionnaire, we want to find out how you
feel about various parts of your life. Please include the feelings
you have now, taking into account what has happened in the last year
and what you expect in the near future.

All of the items are answered simply by writing on the line to the
left of each question one of the following numbers 93 letters to
indicate how you feel. For example write in "1" for "terrible",

"4" for mixed feelings about some question (this is, you are about
equally satisfied and dissatisfied with some part of your life), and
so forth on to the "7" if you feel delighted about it. If you have
no feelings at all on the question, write, "A". If you have never
thought about something, write in "B." If some question does not
apply to you, write in "C."

For two of the questions we also ask you to write in some important
reasons for why you feel as you do. Please finish this section
before going on to the next section.

183

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I feel:
.__fi .__1
I 2 3 4 s 6 __:JT—T'
Terrible Unhappy Mostly Mixed Mostly Pleased Delighted
dissatisfied (about equally satisfied

satisfied and
dissatisfied)

 

 

 

 

 

A Neutral--neither satisfied nor dissatisfied
8 Never thought wout it
C Does not apply to me

 

 

 

1.1 How do you feel about your life as a whole?

1.2 How do you feel about the freedom you have from being
bothered and annoyed?

1.3a How do you feel about your own family life; your husband
or wife, your marriage, and, your children?

1.3b What are some of the most important reasons for why you
feel as you do about your family?

 

 

 

1.5 How do you feel about your independence or freedom--the
Chance you have to do what you want?

1.6 How do you feel about how much you are accepted and
included by others?

1.7 How do you feel about your job?
1.11 How do you feel about how much fun you are having?
1.12 How do you feel about your house or apartment?

1.13 How do you feel about what you are accomplishing in
your life?

I feel:

 

1

184

 

 

 

 

 

 

 

 

 

Terrible

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

considered only

2 3 4 5 6 —-7-1_____
__.l
Unhappy Mostly Mixed Mostly Pleased Delighted
dissatisfied (about equally satisfied
satisfied and
dissatisfied)
A Neutral-oneither satisfied nor dissatisfied
8 Never thought about it
c Does not apply to me

.14 How do you feel about your particular neighborhood as
a place to live?

.16 How do you feel about the way you spend your spare
time, your non-working activities?

.17 How do you feel about yourself?

.20 How do you feel about how interesting your day to day
life is?

.22 How do you feel about the extent to which your social
and emotional needs (for example friends, acceptance
by others, belonging and affection) are met?

.23 How do you feel about your own health?

.25 How do you feel abOut how creative and expressive you
are?

.26 How do you feel about the chance you have to learn new
things or be exposed to new ideas?

.18 How do you feel about your home environment if you
considered only the heating/cooling system?

.19 How do you feel about your home environment if you
considered only the safety of your autistic child?

.20 How do you feel about your home environment if you

the safety for the rest Of the family?

I feel:

 

l

185

 

 

 

 

 

 

 

 

Terrible

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

i‘—‘ F“
2 , l 3 4 S , . 6 7
L L__
Unhappy Mostly Mixed Mostly Pleased Delighted
dissatisfied (about equally satisfied
satisfied and
dissatisfied)
A Neutral--neither satisfied nor dissatisfied
8 Never thought abOut it
C Does not apply to me

 

 

 

.21
.22
.23
.24
.25

.26

How would you feel about your home environment if you
considered only the room or space you have?

How do you feel about your home environment if you con-
sidered only the distance to stores and shopping areas?

How do you feel about your home environment if you
considered only the distance to your friends?

How do you feel about your home environment if you
considered only the distance to your relatives?

How would you feel about your home environment if you
considered only your distance from schools?

How would you feel about your environment if you con-
sidered only your distance from medical services?

186

The guestions on this age ask you to give your reactions to how you
1 e.

woul

feel about your amily l

 

About my FAMILY LIFE I w0u1d feel:

 

 

 

Terrible

 

 

 

 

 

 

 

 

 

 

_I

—_1
2 3 a 5 J 7:
__1—_

 

 

 

 

 

 

 

 

 

 

 

 

 

Unhappy Mostly Mixed Mostly Pleased Delighted

.4a

.4b

.4c

.4d

.4e

.4f

.4h

dissatisfied (about equally satisfied
satisfied and
dissatisfied)

 

A Neutralo-neither satisfied nor dissatisfied

 

 

 

8 Never thought abOut it

 

 

 

C 1 Does not apply to me

I —

How would you feel about your own family 1ife--your
marriage, husband or wife, and children-~if you con-
sidered only its effect on your standard of living?

 

 

How would you feel about your own family life if you
considered only the fun it enables you to have?

 

How would you feel about your own family life if you
considered only the effect on yourTindependence o
freedom--the chance you have to do what you want?

 

 

How would you feel about your own family life if you
considered only the attractiveness and beauty it
enables you to enjoy?

 

 

How would you feel about your own familylife if you
considered only the freedom from bother andiannoyance
that it enables you to have?

 

 

How would you feel about your own family life if you
considered only the safety it enables you to have?

 

How would you feel about your own family life if you
considered only how it enables you to accomplish what

you want?

How would you feel about your family life if you con-
sidered only its effect on your acceptance and inclusion
by other peOple?

 

 

 

 

 

187

The questions on this page ask you to give your reactions to how you
would feel about your neighborhood.

About my NEIGHBORHOOD as a place to live I would feel:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Fr b I

l I l 2 ‘ . 3 4 1 s 6 7 _—

L—d1I—1——. TJ

Terrible Unhappy Mostly Mixed Mostly Pleased Delighted
dissatisfied (about equally satisfied

satisfied and
dissatisfied)

 

 

Neutral--neither satisfied nor dissatisfied

 

 

 

 

 

Never thought abOut it

 

 

 

Does not apply to me

 

 

.5a

.5b

.5c

.5d

.5e

.5f

.59

.5h

How would you feel about your own neighborhood as a
place to live if you considered only the standard of
living it enables you to have?

 

 

How would you feel about your own neighborhood as a
place to live if you considered only the fgg you have?

 

How would you feel about your own neighborhood as a
place to live if you considered only its effect on your
independence or freedom--the chance you have to do what
you want?

 

 

How would you feel about your own neighborhood as a place
to live if you considered only the amount of beauty and
attractiveness it enables you to enjoy?

 

 

 

How would you feel about your own neighborhood as a
place to live if you considered onlylthe freedom you
have from bother and annoyance?

 

 

 

How would you feel about your own neighborhood as a
place to live if you considered only your own safety?

 

How would you feel about your own neighborhood as a
place to live if you considered only how it enables you
to accomplish things?

 

 

How would you feel about your own neighborhood as a
place to live if you considered only how muCh you are
accepted and included by other people?

 

 

188

The questions on this page ask you to give your reactions to how
you would feel about your spare time.

 

 

About my SPARE TIME I would feel:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

. .____1 _____1
1 2 , 3 4 5 6 7 l
.____J _____l
Terrible Unhappy Mostly Mixed Mostly Pleased Delighted
dissatisfied (about equally satisfied
satisfied and
dissatisfied)
A Neutral-oneither satisfied nor dissatisfied
3 Never thought abOut it
C Does not apply to he

 

 

 

2.6a How would you feel about the way you spend your spare
time, your non-working activities, if you considered
only its effect on your standard of living?

 

2.6b How would you feel about the way you spend your spare
time, your non-working activities, if you considered
only how much fgg you have?

2.6c How would you feel about the way you spend your spare
time if you considered only your independence or freedom--
the chance you have to do what you want?

 

 

2.6d How would you feel about the way you spend your spare
time if you considered only the beauty and attractive-
ness you enjoy?

 

 

2.6e How would you feel about the way you spend your spare
time if you considered only the freedom you have from
being bothered and annoyed?

 

 

2.6f How would you feel about the way you spend your spare
time if you considered only your safety?

2.69 How would you feel about the way you spend your spare
time if you considered only how it enables you to
accomplish things?

 

2.6h How would you feel about the way you spend your spare
time if you considered only how much you are accepted

5y others?

189

Now we have some questions of a different kind. For each of the
following four questions check one of the two responses that best
describes how you feel.

4.1

4.2

4.3

4.4

Have you usually felt pretty sure your life would work out
the way you want it to, or have there been times when you
haven't been sure about it?

CHECK ONE:

( ) I have felt pretty sure life would work out the way
I want it to.

( ) There have been times when I haven't been sure
about it.

DO you think it's better to plan your life a good way ahead,
or would you say life is too much a matter of luck to plan
ahead very far?

CHECK ONE:

( ) I think it's better to plan my life a good way
ahead.

( ) I think life is too much a matter of luck to plan

ahead very far.

When you do make plans ahead, do you usuall get to carry
things out the way you expected, or do things usually come
up to make you Change your plans?

CHECK ONE:

( ) I usually get to carry things out the way I
expected.
( ) Things usually come up to make me change my plans.

Some pe0p1e feel that they run their lives pretty much the
way they want to; others feel the problems of life are some-
times too big for them. Which one are you most like?

( ) I feel I can run my life pretty much the way I
want to.
( ) I feel the problems of life are sometimes too big

for me.

More Feeliggs About Your Family Life

Circle the Number that best describes yOur feelings about your own family life.

 

190

For example, circle "1" if

yOu feel terrible about something, circle "4” if you have mixed feelings (that is, you are abOut equally

satisfied and dissatisfied), and circle "7" if you feel delighted about it.

 

Mostly
Terrible Unhappy dissatisfied dissatisfied)

Mixed (about
equally
satisfied *

Mostly
satisfied Pleased Delighted

 

 

6.1

6.2

How would you feel
about your own family
life if you considered

only:

6.1a

6.16
6.1c

6.1e

6.1f

6.19

YOur husband or
wife?

Y0ur children?

The love and
affection you
experience?

The closeness and
sense of belonging
you feel?

The amOunt of res-
pect you receive?

How comfortable it
feels to be at home?

Your marriage?

How would you feel about
your Own family life--
your marriage, husband or
wife and chi1dren—-if you
considered only:

6.2a

6.2b

6.2c

6.2e

The way money is
used

The amount of money
available for your
personal use?

The material goods
it enables yOu to
own

The way decisions
are made?

The things you do
together?

5 6 7
S 6 7
5 6 7
S 6 7
5 6 7
S 6 7
5 6 7
5 6 7
5 6 7
5 6 7
5 6 7
5 6 7

191

 

Mixed (abOut
equally
Mostly satisfied * Mostly
Terrible Unhappy dissatisfied dissatisfied) satisfied Pleased Delighted

 

 

 

 

6.3 How wOuld you feel
about your Own family
life if you considered
only:

6.3a The mutual help-
fulness of family

members? 1 2 3 4 5 6 7
6.36 The way h0use-

hold work is

divided/accomplished l 2 3 4 5 6 7

6.3c How openly and
honestly you can
express feelings? l 2 3 4 5 6 7

6.3d The kind of com-
munication you
have? 1 2 3 4 5 6 7

6.3e The amOunt of time
the family spends
together? 1 2 3 4 5 6 7

6.3f Your sexual rela-
tionship? l 2 3 4 5 6 7

6.39 The time yOu Spend
with yOur children? 1 2 3 4 5 6 7

6.3h The time you Spend
with your husband
or wife? 1 2 3 4 5 6 7

6.3i The friends it
enables you to
enjoy? 1 2 3 4 5 6 7

 

6.4a

6.4b

6.4c

6.4d

192

Have you had any children born to you?

( ) N0 ( ) YES Number of Children
born to you:

If you had it to do over again would you have children?
( ) N0 ( ) YES

How strongly do you feel about the answer you have to the
above question?

( ) Very strongly ( ) Somewhat strongly
( ) Not strongly

What are some of the reasons you feel as you do about having
children?

 

 

 

 

193

CIRCLE THE NUMBER corresponding to the category which most accurately estimates how often the following

 

 

events occOr. For example, circle "1" if something never happens, circle "4" if It happens about once

each month, and circle "8" if it happens about two to three times each day.

 

 

 

 

 

 

About Aboot About About About
About About once once 3-4 once 2-3
once 6 times each each times each times
Never a year each year month week a week day each day
7.1 How often do you and your mate:
7.1a Spend time together--
just the two of you? 1 2 3 4 5 6 7 8
7.16 Spend an h0ur or more
just talking? l 2 3 4 5 6 7 8
7.lc Discuss personal feelings? 1 2 3 4 5 6 7 8
7.1d Work together on a pro-
ject? 1 2 3 4 5 6 7 8
7.1e Take a drive or walk? 1 2 3 4 5 6 7 8
7.1f Eat at a restaurant? 1 2 3 4 5 6 7 8
7.1g Entertain friends at
home? 1 2 3 4 S 6' 7 8
7.1h Visit friends? 1 2 3 4 5 6 7 8
7.1i Go to a movie or other
entertainment? 1 2 3 4 5 6 7 8
7.1j Attend a sports event? 1 2 3 4 5 6 7 8
7.2 How often does your mate:
7.2a Make you feel like an
important person? 1 2 3 4 S 6 7 8
7.2b Tell or Show you that
he/She admires and
respects you? 1 2 3 4 5 6 7 8
7.2c Let yOu know he/She has
confidence in yOur
abilities? 1 2 3 4 5 6 7 8
7.2d Tell or show you his/her
love? 1 2 3 4 5 6 7 8
7.2e Let yOu know She/he
enjoys yOur company? 1 2 3 4 5 6 7 B
7.2f Enjoy a laugh or a joke
with you? 1 2 3 4 5 6 7 8
7.29 Give you a hug or kiss? 1 2 3 4 5 6 7 8
7.2h Do an errand for you? 1 2 3 4 5 6 7 8
7.2i Make him/herself avail-
able to do work for you? 1 2 3 4 5 6 7 8
7.2j DO something to give you
energy or make you com-
fortable? l 2 3 4 5 6 7 8
7.2k Give you new information? 1 2 3 4 5 6 7 8
7.31 Give you his/her Opinion? 1 2 3 4 5 6 7 8

194

 

About About About About“ About
About About once once 3-4 once 2—3
once a 6 times each each times each times
Never a year each year month week a week day each day

 

 

 

 

 

7.2

7.4

How often does your mate:

7.2m Give you something you
need or want? 1 2 3 4 5 6 7 8

7.2h Give you money for per-
sonal use? 1 2 3 4 5 6 7 8

7.20 Help you solve a prob-
lem or make a decision? 1 2 3 4 5 6 7 8

7.2p Support you in the
guidance and discipline
of the children? 1 2 3 4 5 6 7 8

How often does the entire
family group:

7.4a Sit together for a meal? 1 2 3 4 5 6 7 8
7.46 Have a discussion of

ideas? 1 2 3 4 5 6 7 8
7.4c Discuss a decision or

a problem? 1 2 3 4 5 6 7 8
7.4d Work on a project

together? 1 2 3 4 5 6 7 8
7.4e Play a game? 1 2 3 4 5 6 7 8

7.4f Go to a movie or other
entertainment? 1 2 3 4 S 6 7 8

7.4g Attend church services
or activities? 1 2 3 4 5 6 7 8

As an individual, how Often
do you:

M7.5a Visit a friend or a
relative? l 2 3 4 5 6 7 8

M7.56 Speak by phone with a
friend Or relative? l 2 3 4 5 6 7 8

M7.5c Speak with a friend or
relative about your
autistic child? 1 2 3 4 5 6 7 8

M7.Sd Speak with a school repre-
sentative abOut your
autistic child? 1 2 3 4 5 6 7 8

M7.5e Visit your autistic
child's school? 1 2 3 4 5 6 7 8

M7 5f Talk with another parent
of an autistic child? 1 2 3 4 5 6 7 8

M7.Sg Take yOur autistic Child
to appointments with
professionals? 1 2 3 4 5 6 7 8

 

195

M7.6 Are you a member of NSAC? Yes NO MSAC? Yes
No.

 

M7.7 Are you a member of another group for parents of special
children? No Yes Name the
group.

 

 

196

 

 

 

 

 

 

 

 

About About About About About
About About once once 3-4 once 2-3
once 6 times each each times each times
NEVer a year each year month week a week dayy each day
M7.8 How often do you see a pro-
fessional (teacher, minister,
social worker,counselor,
psychologist, etc.) to dis-
cuss:
M7.8a Concerns about your
autistic child? 1 2 3 4 5 6 7 8
M7.86 Concerns about your
family? 1 2 3 4 5 6 7 8
M7.8c Concerns about your-
self? 1 2 3 4 5 6 7 8
M7.9 How often do you read a book
or an article about autism? l 2 3 4 S 6 7 8
M7.10 How often do you attend an
informational meeting on
autism? 1 2 3 4 5 6 7 8
M7.11 How often do yOu attend a
Support meeting for parents
or families of autistic
persons? 1 2 3 4 S 6 7 8
M7.12 How often do you use a baby-
sitter (not an immediate
family member) for your
autistic child? 1 2 3 4 5 6 7 8
M7.13 How often do you use respite
care services for your
autistic child? 1 2 3 4 5 6 7 8

 

197

Most peOple have disagreements in their relationships. Please CIRCLE THE NUMBER under the category that
indicates the approximate extent of agreement or disagreement bétween you and your mate for each of the
following items. For example, circle "1" if you always disagree on a subject, circle "3" if you frequently
disagree. and circle "6" if you always agree on it.

 

 

 

 

 

 

Almost Almost
Always always Frequently Occasionally always Always
disagree disagree disagree disagree agree agree
8.1 Handling family finances 1 2 3 4 5 6
8.2 Matters of recreation l 2 3 4 5 6
8.3 Religious matters 1 2 3 4 5 6
8.4 Demonstration of affection l 2 3 4 5 6
8.5 Friends 1 2 3 4 S 6
8.6 Sex relations 1 2 3 4 5 6
8.7 Conventionality (correct or
proper behavior) 1 2 3 4 5 6
8.8 PhiloSOphy of life 1 2 3 4 5 6
8.9 Ways of dealing with
parents or in-laws l 2 3 4 5 6
8.10 Aims, goals, and things
believed important 1 2 3 4 5 6
8.11 Amount of time spent
together 1 2 3 4 5 6
8.12 Making major decisions 1 2 3 4 5 6
8.13 Household tasks 1 2 3 4 5 6
8.14 Leisure time interests
and activities 1 2 3 4 5 6
8.15 Career decisions 1 2 3 4 5 6
M8 16 Ways to raise autistic child 1 2 3 4 5 6
M8.17 Ways to raise our "other“
children 1 2 3 4 5 6

M8.18 Influence Our autistic child
will have on Our future 1 2 3 4 5 6

 

198

This section takes a look at the unique demands for care and supervision that autistic children require.
The questions can be answered by circling the number which best represents your judgement of how much time

you spend on an average for that task.

 

 

 

 

 

About About 1-22-44-8
About once once Under 30 30-60 hours hours hOurs
once a each each minutes minutes per per per
Never year month week each day per day day day day, Constantly

M10 1 How much time do

you spend in the

following activi-

ties for your

autistic child:
M10 1a Special medical care

care (exercises,

diet, etc.) 1 2 3 4 5 6 7 8 9 10
M10 16 Playing with l 2 3 4 5 6 7 10
MlO.lc Caring for (dress-

ing, bathing,

feeding) l 2 3 4 5 6 7 8 9 10
M10.1d Cleaning up after 1 2 3 4 5 6 7 8 9 10
M10.1e Worrying about 1 2 3 4 5 6 7 8 9 10
M10.1f Enjoying 1 2 3 4 5 6 7 8 9 10
M10.1g Trying to get

babysitters for 1 2 3 4 5 6 7 8 9 10
M10.1h Teaching 1 2 3 4 S 6 7 8 9 10
M10.1i Supervising to

protect from

danger 1 2 3 4 5 6 7 8 9 10
M10.1j Supervising to

protect from

"mischief" or

"messes“ 1 2 3 4 5 6 7 8 9 10

 

199

This section asks yOu to consider how many things you can do at the same time that you are caring for your

autistic child.

 

take place at the same time you are caring for your autistic child.

CIRCLE THE NUMBER Which best rEpresentS yOur estimation of how often other activities

 

 

 

 

 

About About 1-22-44-8
About once once Under 30 30-60 hours hours hours
once a each each minutes minutes per per per
Never year month week each day per day day day day, Constantly

M11.l When your autistic

child is at home,

how Often can you

do any of the

following activi-

ties:
Mll.la Household mainten-

ance (repairs,

cleaning, etc.) 1 2 3 4 5 6 7 8 9 10
M11 16 Household care

(meal preparation,

laundry, etc.) 1 2 3 4 5 6 7 8 9 10
Mll.lc Lesiure or hobby

activities 1 2 3 4 5 6 7 8 9 10
Mll.1d Socializing with

other family

members 1 2 3 4 S 6 7 8 9 10
Mll.le Entertaining 1 2 3 4 S 6 7 8 9 10
Mll.1f Household manage-

ment (shopping, meal

planning, running

errands, etc.) 1 2 3 4 S 6 7 8 9 10
Mll.lg Homework from job

or studies 1 2 3 4 5 6 7 8 9 10
Mll.lh Thinking, planning

daydreaming l 2 3 4 5 6 7 8 9 10

 

200

Now that you have done some thinking about your family life and your
life in general, we would like to ask you how you feel about them.
Please write on the line to the left of each question one of the
following numbers or letters to indicate how you feel. For example,
if you feel terribTE about it write in "1", if you have mixed feel-
ings about it (that it,you are about equally satisfied and dis-
satisfied) write in "4" and if you feel delighted about it write in
"7." If you feel neutral about it (that is, you are neither satis-
fied or dissatisfied), write in "A." If you have never thought about
it, write in "B." If it does not apply to you, write in "C."

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

__ . 3 4 |___. s 6 7
l..._J. L___.
Terrible Unhappy Mostly Mixed Mostly Pleased Delighted

dissatisfied (about equally satisfied
satisfied and
dissatisfied)

 

 

 

 

 

 

 

A Neutral-oneither satisfied nor dissatisfied
8 Never thought about it
C Does not apply to me

 

9.1 How do you feel about your own family 1ife--your husband
or wife, your marriage, and your children?

9.2 How do you feel about your life as a whole?

9.3 This study has asked you to tell us how you feel about various
parts of life. Are there things which affect your quality of

life which have not been included. If so, please write them
below?

 

 

 

 

 

 

201

YOUR FAMILY SITUATION

 

This study is about the quality of life of family members. Therefore,
we are interested in knowing some things about yourself and your
family. As you answer the questions, please consider only yourself
and the family members pgy living in your household.

FOR EACH QUESTION, PLACE A CHECK MARK IN THE BRACKETS ( ) OR
WRITE IN THE ANSWER ON THE LINE PROVIDED.

13.1 What is your sex?
( ) Male
( ) Female

13.2a How old were you on your last birthday?
_______Age at last birthday.

13.2b What is the month, day, and year of your birth?

 

Month Day Year of Birth

13.3 What is your religion, if any?

 

( ) Protestant:
(Please specify)
( ) Catholic
( ) Jewish
( ) None
( ) Other:

 

(Please specify)

13.4‘ What is your race?

( ) White
( ) Black/Negro/Afro-American
( ) Other:

 

(Please specify)

202

13.5 Do you (or does a member of your family who lives with you)
own your home, do you rent, or what? (CHECK ONE)

( ) Own or buying
( ) Renting
( ) Other:

 

(Please specify)
13 6a Is this your first marriage?
( ) YES -------- In what year were you married?
( )NO ---------

13 6b In what year did your
present marriage begin?

 

13.6c How did your last marriage end? CHECK ONE

 

( ) Death ----- Year of death:
( ) Divorce ----- Year of divorce:
( ) Annulment___Year of annulment:

13.7a What is the highest level of formal schooling that you have
completed? CHECK ONE

(

(

) Less than 8 grades of elementary school
)

( ) 1 - 3 years of high school
)

8 grades of elementary school

Completed high school and received diploma or passed
high school equivalency exam.

) l - 3 years of college
) College graduate, bachelor's degree
( ) Post bachelor's course work
) Master's degree
) Ph.D., Ed.D.

( ) Other professional degree (such as MD, 00, JD,DDS):

 

please specify

13.7b

13.9b

13.9c

13.9d

203

Are you NOW attending or enrolled in one of the programs
listed above?

( ) YES -------- 13 7C If YES, is that full-time or
part-time?

( )NO
( ) Full-time student
( ) Part-time student

13 7d Please specify in which one of the
above programs you are now enrolled
(such as high school, college
master's program).

Type of school or program:

 

If you are working now 93 are temporarily laid Off 93 on
strike OR_on Sick leave, what kind of work do you do? What
is your main occupation called? (If yOu have two jobs, your
main occupation is the job on which you Spend the most time.
If you spend an equal amount of time on two jobs, it is the
one which provides the most income.)

Main occupation

 

What do you actually do in that job? What are some of your
main duties?

Duties

 

 

What kind of business, industry or organization is your job in?
What do they do or make at the place where you work?

Kind of business, industry or organization

 

 

What they make or do

 

 

204

13.9e About how many hours a week do you do this work? CHECK ONE

(
(
(
(
(
(
(

)
)
)
)
)
)
)

Less than 30 hours per week
20 hours per week

21-39 hours per week

40 hours per week

41-50 hours per week

51-60 hours per week

More than 60 hours per week

13.9f Do you do this work inside your home, outside your home but
on your own property, or away from your home and property?
CHECK THE ONE PLACE IN WHICH YOU 00 MOST OF THIS WORK.

Inside my home
Outside my home but on my own property

Away from my home and property

13.9g Are you an hourly wage worker, salaried, on commission, self-
employed, or what? CHECK ONE

(
(
(
(

(

l
)
)
)

)

Hourly wage worker
Salaried
Work on commission, tips

Self-employed in own business, professional practice,
or farm

Work without pay in family business or farm

 

13.9 How long have you been in your present job?

years and months

205

13.9i IS this your first job?

( ) NO ------ 13.9j What kind of work did you do in your
first full-time job after completing
( ) YES your education or training? What was

occupation called?

Occupation

 

13.9k What did you actually do in that job?
What were some of your main duties?

Duties

 

 

19.31 Would you be satisfied to stay in your present position indefi—

nitely? '
( ) YES
( ) N0

13.9m Do you anticipate a change from your present occupation or
your position within the near future?

( ) YES ------ l3 9n If YES, please describe your antici-
pated new position, what your title
( ) N0 will be and what you will do.

Anticipated new position

 

 

Title

 

Duties

 

 

13.90 Are you currently employed in a second job:

( ) YES ------ 13.9p If YES, about how many hours a week
do you do this work?
( ) NO
) Less than 20 hours per week

(
( ) 20 hours per week

( ) 21-39 hours per week
(

) 40 hours per week

206

13.11a What do you estimate will be your total family income before
taxes in 1980? Please include income from all sources befOre
taxes, including income from wages, property, stocks, interest,
welfare, Aid to Families with Dependent Children, child
support from a previous marriage, and any other money income
received by you and all family members who live with you.

 

 

ESTIMATED TOTAL FAMILY YEARLY INCOME, 1980

 

( 1 Under $3,000 ( ) $12,000 - 14,999
( ) $ 3,000 - 3,999 ( ) $16,000 - 19,999
( ) $ 4,000 - 4,999 ( ) $20,000 - $24,999
( ) $ 5,000 — 5,999 ( ) $25,000 - 29,999
( ) $ 6,000 - 6,999 ( ) $30,000 - 34,999
( ) $ 7,000 - 7,999 ( ) $35,000 - 49,999
( ) $ 8,000 - 9,999 ( ) $50,000 - 74,999
( ) $10,000 - 11,999 ( ) $75,000 and over

13.116 About how much of this total family yearly income do you

estimate that 190 will earn in 1980:

ESTIMATED PORTION OF TOTAL FAMILY INCOME, 1980i EARNED BY
YOURSELF

(

 

Does not apply, not employed in 1980

l
( ) Under $3,000 ( ) $12,000 - 14,999
( ) $ 3,000 - 3,999 ( ) $15,000 - 19,999
( ) $ 4,000 - 4,999 ( ) $20,000 - 24,999
( ) $ 5,000 - 5,999 ( ) $25,000 - 29,999
( ) $ 6,000 - 6,999 ( ) $30,000 - 34,999
( ) $ 7,000 - 7,999 ( ) $35,000 - 49,999
( ) $ 8,000 - 9,999 ( ) $50,000 - 74,999
( ) $10,000 - 11,999 ( ) $75,000 and over

207

13.12 In the coming year, would you say your financial Situation
will get worse, stay about the same, or get better?
CHECK ONE
( ) Get worse
( ) Stay about the same

( ) Get better

208

IMPORTANCE OF LIFE CONCERNS

 

All of us have an idea of what we think is 1'mportant in life. Now that you have done a lot of thinking about
various parts Of your life, we would like to ask you how important you think various life concerns are.

’Take a few moments to think about what is important to yOu. CIRCLE THE NUMBER in the column that best rep-
resents the degree of importance of each life concern to you.iiFOr example, circle “1" if it is of no
importance, circle "3" if it is of some importance, and circle "5” if it is of very high importance.

 

 

 

 

Mo Very
importance Little Some High high
at all impprtance impprtance importance impgrtance

14.1 Having freedom from bother

and annoyance l 2 3 4 5
14.2 My family life 1 2 3 4 5
14.3 Beauty and attractiveness

in my day to day life 1 2 3 4 S
14.3 My independence or freedom 1 2 3 4 5
14.5 Being accepted and included

by others 1 2 3 4 5
14.6 My job 1 2 3 4 5
14.7 My standard Of living--the

things I have like housing,

car, furniture, recreation,

and the like 1 2 3 4 5
14.10 Having Fun 1 2 3 4 5
14.11 My house or apartment 1 2 3 4 5
14.12 Accomplishing something 1 2 3 4 5
14.13 My neighborhood 1 2 3 4 5
14.15 The way I Spend my Spare time,

my non-working activities 1 2 3 4 5
14.16 Myself 1 2 3 4 5
14.18 Having financial security 1 2 3 4 5
14.19 Having an interesting day to

day life 1 2 3 4 5
14.20 Having my physical needs met 1 2 3 4 5
14.21 Having my social and emotional

needs met 1 2 3 4 5
14.22 My own health 1 2 3 4 5
14.23 Our total family income 1 2 3 4 5
14.24 Being creative or expressive 1 2 3 4 5
14.25 Our children 1 2 3 4 5
14.26 Having the opportunity to

learn new things 1 2 3 4 5

14.27 Having love and affection l 2 3 4 5

 

209

14.28 What other things are very important to you? Please list
them below.

 

 

 

 

210

15.1a We would like to know something about the peOple who live
in your household. In the chart below, please list for
ALL PERSONS LIVING IN YOUR HOUSEHOLD NOW: their birth date,
age at last birthday, sex and marital status. 00 not list
any person more than once. "“

 

Please use the following numbers to indicate marital status:

 

( l ) Never married ( 4 ) Separated
( 2 ) Married ( 5 ) Divorced, not remarried
( 3 ) Widowed, not ( 6 ) Don't know
remarried
Date of Age of Sex Marital
birth last (circle Status

mo./day/yr. birthday M or F)

 

 

 

 

 

 

 

 

 

 

SPOUSE
(husband or wife) M F
CHILDREN BORN TO THIS 1. M F
MARRIAGE, LIVING IN

THIS HOUSEHOLD 2. M F
Please list in order 3. M F

from oldest to youngest
M F
5 M F
6. M F
7. M F
8. M F
9. M F

 

 

211

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Date of Age of Sex Marital__
birth last (circle Status

mdL/day/yr. birthday M or F)
CHILDREN BORN TO WIFE 1. M F
PRIOR TO THIS MARRIAGE,
LIVING IN THIS HOUSE- 2. M F
HOLD

3. M F
Please list in order
from oldest to young- 4. M F
est

5. M F
CHILDREN BORN TO HUS- 1. M F
BAND PRIOR TO THIS
MARRIAGE, LIVING IN 2. M F
THIS HOUSEHOLD

3. M F
Please list in order
from oldest to young- 4. M F
est

5. M F
ADOPTED CHILDREN NOT 1. M F
BORN TO EITHER SPOUSE,
LIVING IN THIS HOUSE- 2. M F
HOLD

3. M F
Please list in order
from oldest to young- 4. M F
est

5. M F
OTHER RELATIVES LIVING l. M F
IN THIS HOUSEHOLD
(such as niece, 2. M F
nephew, grandchild,
parent, sister, 3. M F
uncle, brother,
brother-in-law, 4. M F
mother-in-law, hus-
band's uncle) 5. M F

5- M F

 

212

 

Date of Age of Sex Marital__
birth last (Circle Status
mO./day/yr. birthday M or F)

 

 

 

 

 

 

 

OTHER PERSONS LIVING l. M F

IN THIS HOUSEHOLD

(such as foster child, 2. M F

friend, household

help, boarders) 3. M F
4 M F
5. M F
6. M F
7. M F

 

 

NOTE: If there are not enough spaces, please finish the list on
the last page.

15.16 Counting yourself, how many people live in your household?

peOple

 

15.2a Are there any other children born to you and/or your spouse
(including children from previous marriages) who are not
listed in the preceding chart?

( ) YES ----- 15.2b If YES, how many?
( ) NO males
females

15.2c Please list their ages at last birth-
day from oldest to youngest by sex.

Males

 

 

Females

 

 

213
THANK YOU VERY MUCH for completing this questionnaire. We will send
you a summary of results from this study.

If you wish to make any comments about how you felt while filling
out this questionnaire, please do:

 

 

 

 

 

 

214

TABLE C-l.--Age of Autistic Child in Two Autism Groups.

 

 

 

 

Gray Non-Selected
N = 22 N - 88
Ages _L_ _L_ _L ._7L
1 - 5 years 4 18.2 10 11.4
6 - 10 years 7 31.8 26 29.5
11 - 15 years 6 27.3 32 36.4
16 and over 4 18.2 18 20.5
Missing 1 4.5 2 Missing
MEAN AGE 10 ll

 

TABLE C-2.--Presence of Other Handicapping Conditions' in Two

Autism Groups

 

 

 

 

Gray Non-Selected
N = 22 N - 88
Ages _N_ % _IL 76
NO other Handicap 13 59.1 62 70.5
Presence of Other
Handicap (i.e.,
seizure disorder,
aphasia, mental
retardation) 9 40.9 26 29.5

 

215

TABLE C-3.--Presence of Verbal Ability in Two Autism Groups.

 

 

 

 

Gray Non-Selected
(N = 22) (N = 88)
_N_ __ _L _L
Verbal Ability 8 29 33.0
Non-Verbal 13 45 51.1
Missing 1 14 15.9
22 100.0 88 100.0

 

TABLE C-4.--Number of Children in Families of Two Autism Groups

 

 

 

 

Gray Non-Selected
Number of Children (N = 22) (N = 88)
in Family (_N_ (_N_

l 4 16 18.2
2 - 3 13 38 43.2
4 and over 4 25 28.4
Missing 1 9 10.2

22 100.0 88 100.0

 

216

TABLE C-5.--Age of Mothers in Two Autism Groups?

 

 

 

 

 

Gray Non-Selected

Age of Mother _J1_ %7 _jL_ %*
18 - 25 1 4.5 7 8.8
26 — 35 8 36.4 30 37.5
36 - 50 11 50.0 39 48.7
51 and up 2 9.1 4 5.0

Missing 8

TOTAL 22 100.0 88 100.0

 

aData from the i979 College of Education Survey.

TABLE C-6.--Ages of Fathers in Two Autism Groups.

 

 

 

 

 

Gray Non-Selected

Age of _Ji_ % _Jl_ %
18 - 25 3 4.1
26 - 35 5 22.7 20 27.0
36 - 50 10 45.5 38 51.4
51 and up 7 31.8 13 17.6
Missing 14 15.9
TOTAL 22 100.0 88 100.0

 

217

TABLE C—7.--Distance from Nearest Relative in Miles for Two Autism

 

 

 

 

 

 

Groups.
Gray Non-Selected
N = 22 N = 88
_N__ _%__ .11.. _L
l - 5 miles 15 68.2 50 60.2
6 - 20 miles 3 13.6 11 13.3
21 - 50 miles 6 7.2
51 - 100 miles 2 9.1 46 4.8
Over 100 miles 1 4.5 12 14.5
Missing 1 4.5 5 Missing
TOTAL 22 100.0 88 100.0

 

218

TABLE C-8.--Se1ected Indices for Gray Autism Sample and DeMyer

Sample.a

 

 

 

DeMyer Gray

Mean Age

Child 5 10

Mother 33 31

Father 36 37
Sex Autistic Child

Male 76% 73%

Female 24% 27%
Race

White 83% 86.4%

Black 17% 13.6%
Number of Siblings

O 15% 18.1%

1 or 2 61% 59.1%

3 or More 24% 18.2%

Missing Data - 4.5
Verbal Behavior

Non-Verbal 65% 59 1%

Verbal (Range of Communicative

Intent) 36% 36.4%
aSource: Marian K. DeMyer. Parents and Children in Autism. (New

York: John Wiley & Sons, 1979), p. 2.

 

219

TABLE C-9.--Education and §ocioeconomic Status of Gray Sample and

DeMyer Sample.

 

 

DeMyer Gray
Education
Below High School
Mother 19% 4.5%
Father 20% 9.1%
High School Grad
Mother 66% 68.2%
Father 40% 50.0%
College Graduate and above
Mother 15% 27.3%
Father 39% 40.7%
Socioeconomic Status
High 20%
Middle 70%
Low 10%
Occupational Status of Fathers
Professional/Managerial 49.9%
Sales/craftsman/Operatives 55.6%
Laborers/Private Household 4.5%

 

aSource: Marian K. DeMyer, Parents and Children in

Autism, (New

 

John Wiley Sons, 1979), p. 3.

220

TABLE C-lO.--Age of Respondents - Oakland.

 

OAKLAND SAMPLE

 

 

 

 

Women Men
Age _N_ _;L __N_ _ZL
30 and younger 46 18.9 31 13.1
31 - 35 61 25.0 44 18.6
36 - 4O 56 23.0 56 23.6
41 - 45 34 13.9 42 17.7
47 - 55 42 17.2 50 21.1
Over 55 2 .8 13 5.5
Missing Data 3 1.2 l .4
TOTAL 244 100.0 237 100.0
MEAN 37.5 40.2
RANGE 22 - 59 24 - 63

 

221

TABLE C-11.s-Age of Respondents - Autism.

 

AUTISM SAMPLE

 

 

 

 

 

Women Men
Age __N_ % _L _L
30 and younger 4 18.2 4 19.0
31 - 35 6 27.2 4 19.0
36 - 40 5 22.7 3 13.5
41 - 45 3 13.5 1 4.5
46 - 55 4 18.1 7 31.8
Over 55 O 0 2 9.1
Missing Data 0 O 1 4.5
TOTAL 22 100.0 22 100.0
MEAN 37.8 41.7
RANGE 25 - 52 27 - 61

 

 

222

TABLE C-12.--Race of Respondents.

 

OAKLAND SAMPLE

 

 

 

 

 

 

 

 

 

 

 

Women ___ Men
Age _N_ - if i %
White 194 79.5 196 82.7
Black 46 18.9 41 17.3
Mexican American 1 .4 -- --
Other 3 1.2 -- --
TOTAL 244 100.0 237 100.0
AUTISM SAMPLE
Women Men
Age _N_ %. _N_ if
White 19 86.4 18 81.9
Black 3 13.6 3 13.6
Mexican American 0 O O O
Other 0 O 1 4.5
TOTAL 22 100.0 22 100.0

 

223

 

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224

TABLE C-l4.—-Number of Own or Adopted Children Living in Household
for Autism and Oakland Groups.

 

 

 

 

 

 

Oakland Autism
No. of Children _jL_ __3L__ _jL_ %
1 33 13.5 3 13.6
2 86 35.2 10 45.5
3 66 26.2 6 27.3
4 38 15.6 - -
5 12 4.9 2 9.1
6 or More 11 4.5 l 4.5
TOTAL 244 100.0 22 100.0
MEAN 2.8 2.6

RANGE 1 - 9 1 - 6

 

 

225

TABLE C-15.--Number of People Living in Household for Autism and

Oakland Groups

 

 

 

 

 

Oakland Autism
__N_ __%_ ..'L _2C_
2 Persons 1 .4 O O
3 Persons 31 12.7 3 13.6 ‘
4 Persons 81 33.2 10 45.5
5 Persons 64 26.2 6 27.3
6 Persons 43 17.6 0 O
7 Persons 10 4.1 2 9.1
8 or Above 14 5.7 l 4.5
244 100.0 22 100.0
MEAN 4.9 4.6
RANGE 2 - 11 3 - 9

 

 

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228

TABLE C-18.--Ages of Children Listed as Not Living in the Householda
for Autism and Oakland Groups.

 

 

 

OAKLAND AUTISMb

Age Group No. of % of No. of %’of
Children Families Children Families

5 years and under 4 6.4 O 0

6-12 years 4 6.4 O 0
13-18 years 16 25.4 3 60.0
19-22 years 27 42.7 5 60.0
23-30 years 47 74.6 3 40.0

Over 30 years 8 12.8 0 0

Missing data 13 20.6 0 0
TOTALS 119 100.0% 11 100.0

 

aThese data pertain only to the 63 Oakland families and the 5 autism
families who reported children not living in the household including
children from previous marriages. In other words 25.8% of Oakland
families and 23.7% of autism families reported children not living
at home.

bSome families reported children from more than one age group not
living at home.

229

TABLE C-l9.--Highest Level of Formal Education for Women in Autism

and Oakland Groups.

 

 

 

 

 

 

Oakland Autism
_N_ % __N_ if

Less than 8 grades of
elementary school 1 .4 1 4.5
Completed 8 years Of
elementary school 6 2.5 - -
1-3 years of high school 33 13.5 - -
Completed high school 119 48.8 8 36.4
1-3 years of college 45 18.4 7 31.8
Bachelor's degree 17 7.0 2 9.1
Post Bachelor course work 14 5.7 2 9.1
Master's degree 6 2.5 2 9.1
Post Master's course work 2 .8 O -
Ph.D., Ed.D. - - o _
Other Prof. - - O -
Missing Data 1 .4

TOTAL 244 100.0 22 100.0

 

 

230

TABLE C-20.--Highest Level of Formal Education for Menain Autism
and Oakland Group.

 

 

 

 

 

 

Oakland Autism
_L % _N_ %

Less than 8 grades of
elementary school 6 2.5 - -
Completed 8 years of
elementary school 8 3.4 - -
1-3 years of high school 33 13.9 2 9.1
Completed high school
(high school diploma) 66 27.9 9 40.9
1-3 years of college 55 23.2 2 9.1
Bachelor's degree 23 9.7 1 4.5
Post Bachelor's course work 18 7.6 1 4.5
Master's degree 18 7.6 3 13.6
Post master's course work 2 .8 l 4.5
Ph.D., Ed.D. 3 1.3 l 4.5
Other professional degree
(such as MD, 00, JD, DOS) 3 1.3 2 9.1
Missing data 2 .8 - -

TOTAL 237 100.0 22 100.0

 

aIn the Oakland sample, 19.4 of the men held degrees beyond a
Bachelor's. In the Autism fathers, 36.4 held degrees beyond the
Bachelor's.

 

231

TABLE C-21.--Employment Status of Women in Autism and Oakland Groups.

 

 

 

 

 

 

Oakland Autism
_N_ 76 _u. %
E1

Housewife or Househusband
not employed or looking
for work 112 46.0 8 36.4 ,
Employed away from home 95 39.0 14 63.6
Unemployed, looking for
work, on strike, or on
Sick leave 24 10.0 - -
Retired or Disabled 1 4.0 - -
Student Not Employed 9 4.0 - -
Missing Data 3 1.0 O

 

 

244 100.0 22 100.0

 

 

232

TABLE C-22.--Employment Status for Men in Autism and Oakland Groups.

 

 

 

 

 

 

Oakland Autism

_N_ % _N_ %
Housewife of Househusband
not employed or looking
for work 1 4.0 - -
Employed away from home 218 92.0 20 90.9
Unemployed, looking for
work, on strike, or on
Sick leave 10 4.0 1 4.5
Retired or Disabled 8 3.0 l 4.5

Student Not Employed - - - -

Missing Data - - - —

237 100.0 22 100.0

 

 

233

TABLE C-23.e-Types of Occupations Held by Women in Autism and

Oakland Groups.

 

 

 

 

 

 

Oakland Autism
_N_ 76 _IL %

Professional, Technical,
and Kindred Workers 25 10.2 4 18.1
Managers and Administrators,
except Farm 6 2.5 1 4.5
Sales Workers 10 4.1 2 9.1
Clerical and Kindred
Workers 25 10.2 1 4.5
Craftsmen and Kindred
Workers 1 .4 - -
Operatives, except trans-
port 9 3.7 l 4.5
Transport Equipment Opera-
tives 4 1.6 l 4.5
Laborers, Except farm 1 .4 - -
Service Workers, except
Private Household 16 6.6 4 18.1
Private Household Workers 5 2.1 0 -
Not Employed for Pay (e.g.,
Homemakers, retired, dis-
abled) 139 57.0 8 36.4
Missing Data 3 1.2 — -

TOTAL 244 100.0 22 100.0

 

 

234

TABLE C-24.--Types of Occupations Held by Men in Autism and Oakland
Groups. '

 

 

 

 

 

 

 

Oakland Autism

_LL. % _N__ %
Professional, Technical,
and Kindred Workers 6 2.5 7 31.8
Managers and Administrators,
except Farm 8 3.4 4 18.1
Sales Workers 33 13.9 3 13.6
Clerical and Kindred
Workers 66 27.9 - -
Craftsmen and Kindred
Workers 55 23.2 2 9.1
Operatives, except trans-
port 23 9.7 2 9.1
Transport Equipment Opera-
tives 18 7.6 1 4.5
Laborers, Except farm 18 7.6 1 4.5
Service Workers, except
Private Household 2 .8 1 4.5

1

Private Household Workers 3 1.3 - -
Not Employed for Pay (e.g.,
Homemakers, retired, dis-
abled) 3 1.3 1 4.5
Missing Data 2 -8 ' ‘

TOTAL 237 100.0 22 100.0

 

 

235

TABLE C-25.--Total Family Incomeabefore Taxes for Autism and
Oakland Group.b

 

 

 

 

OAKLAND AUTISM

Income _N__ __}L__ _jL_ __jé__
Under $5,000 5 2.0 - -
$ 5,000 - $ 9,900 19 7.8 1 4.5
$10,000 - $14,999 14 5.7 l 4.5
$15,000 - $19,999 37 15.2 3 13.6
$20,000 - $24,999 49 20.1 4 18.2
$25,000 - $29,999 45 18.5 3 13.6
$30,000 - $34,999 31 12.7 3 13.6
$35,000 - $49,999 32 13.1 3 13.6
Over $50,000 10 4.1 4 18.2
Missing data 2 .8 - -

TOTALS 244 100.0 22 100.0

 

aIncluding wages, property, stocks, interest, welfare, Aid to Fami-
lies with Dependent Children, Child Support from a previous marriage,
and any other money income received by all family members in the
household.

bThe Oakland figures represent income received in 1977, while the
Gray figures refer to 1979 income. With the inflation rate, it

would appear that the Gray sample represents a slightly lower aver-
age income except for the higher percentage in the highest income
level.

'1

 

 

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