PSYCHOLOGICAL HEALTH OF PARENTS
OF CHILDREN WITH AUTISM SPECTRUM
DISORDER
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Ayca Coskunpinar & Cody Davis
Hanover College
AUTISM SPECTRUM DISORDER

Autism Spectrum Disorder is an umbrella term for
5 variations of Pervasive Developmental Disorders

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Autistic Disorder
Rett’s Disorder
Childhood Disintegrative Disorder
Asperger’s Disorder
PDD-Not otherwise specified
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CHARACTERISTICS OF CHILDREN WITH ASD
Challenges in communicating
 Difficult behaviors
 Social isolation

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PSYCHOLOGICAL HEALTH OF ASD PARENTS

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Parents of children with ASD experience higher levels
of parenting stress and higher levels of depression
compared to parents of children with other
disabilities, other healthcare needs, or no healthcare
needs (Sheive, 2007)
Parents experience felt and enacted stigmas (Gray,
2002)
Sleep patterns of children with ASD are more
problematic when compared to the patterns of typical
children (Lopez-Wagner et al., 2008)
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FRAGILE-X SYNDROME


Associated with mental retardation,
hyperactivity, short attention span, and
perseverative speech
Research on Fragile-X seems to show less effect
on the stress of parents (Lewis et al., 2006)
more challenges are presented for parents of these
children compared to those of Down syndrome
 mothers are more pessimistic
 mothers report more conflict as well

http://www.nichd.nih.gov/health/topics/developmental_disabilities.cfm
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DOWN SYNDROME

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Associated with mild to moderate mental
retardation, delayed language development,
and slow motor development
Parents of children with Down syndrome seem
to experience less stress and more rewards
compared to parents whose children have other
disabilities and possibly even equal rewards
compared to parents of “typical” children
(Hodapp, 2001).
http://www.nichd.nih.gov/health/topics/developmental_disabilities.cfm
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“DOWN SYNDROME ADVANTAGE”

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As mentioned, parents of children with Down
syndrome report lower stress levels than parents
of children with other developmental disorders
However, recent research suggests that this
advantage disappears when certain
socioeconomic markers are controlled, EXCEPT
when the comparison group is parents of children
with ASD (Stoneman, 2007)
Stoneman (2007) suggests exploring this possible
“autism disadvantage”
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RESEARCH QUESTION

Are there differences in the psychological health
of parents of children with ASD, Down syndrome,
and Fragile-X, as measured by stress, depression,
and coping strategies used?
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HYPOTHESIS

Consistent with the notion of an “autism
disadvantage” we expect to find that parents of
children with Autism Spectrum Disorder will
report higher levels of stress, higher levels of
depression, and poorer coping strategies
compared to parents of children with Down
syndrome and Fragile-X Syndrome.
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PARTICIPANTS

114 volunteer parent participants
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ASD = 24
Down syndrome = 31
Fragile-X = 31
Typical Children = 28
Other = 6 (excluded from the analysis)
Male = 14, Female = 100
 Mean age = 38 (range = 19 to 64)
 Predominantly Caucasian-American
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INTERNET SITES USED TO GATHER DATA
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Down syndrome
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DownSyn Forum
Fragile-X
Fragile_X_Michigan
 Fragile X Yahoo Group
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Autism Spectrum Disorder
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ds-autism
Other sites and support groups used included:
Parents_of_special_needs_kids_DE_MD_PA@yahoogroups.com
 Timetotalk
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MATERIALS
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Demographic Survey
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Stress Scale
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Depression Scale
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The Parental Stress Scale (PSS)
Center for Epidemiologic Studies Depression Scale
(CES-D), NIMH
Coping Scale
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The Ways of Coping Inventory (WoC-Abbr)
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The Parental Stress Scale (PSS)

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There are 18-items on the scale with higher
averages indicating higher levels of stress.
Scoring:
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1 = ‘strongly disagree; 2 = ‘disagree’; 3 = ‘neutral’; 4 =
‘agree’; and 5 = ‘strongly agree.’
Sample Statement: Caring for my child(ren)
sometimes takes more time and energy than I
have to give.
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CENTER FOR EPIDEMIOLOGIC STUDIES
DEPRESSION SCALE
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There are 20-items in the scale, which we cut down to
12. Higher averages indicate more depressive
symptoms.
Scoring: 0 = ‘rarely or none of the time’; 1 = ‘some or a
little of the time’ (1-2 days per week); 2 = ‘occasionally
or a moderate amount of the time’ (3-4 days per week);
3 = ‘most or all of the time’ (5-7 days per week).
Sample Statement:
 I felt that I was just as good as other people
 I felt depressed
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THE WAYS OF COPING INVENTORY
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This inventory is made up of 44 statements,
which we cut down to 25 statements.
Scoring: 1 (if the strategy was used) and 0 (if the
strategy was not used in raising the child).
Has subscales measuring the following: ProblemFocused Coping and Emotion Focused Coping
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PFC: Made a plan of action and followed it.
EFC: Criticized or lectured yourself.
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RELIABILITY

Depression Scale:  = .849
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Stress Scale:  = .869
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Coping Scale (Problem Focused):  = .794
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Coping Scale (Emotion Focused):  = .755
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RESULTS
A
univariate analysis of variance was used
to compare the means of the three groups
on the stress, depression, and coping
measures.
 The
results did not change when analyses
controlled for markers of socio-economic
status.
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Down syndrome parents were less depressed than all other
groups (p < .001)
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Parents of children with Down syndrome were significantly less
stressed than parents of children with Fragile-X (p < .001) and
parents of typically developing children(p < .01)
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Parents of children with Autism (p < .001), Down syndrome (p < .05),
and Fragile-X (p < .05) used problem-focused coping significantly
more than the parents of typically developing children.
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Parents of children with Down syndrome used significantly less
emotion-focused coping than parents of children with Autism (p <
.05), and parents of children with Fragile-X (p < .01)
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DISCUSSION

We found no evidence for an autism disadvantage
in terms of either stress or depression.

One reason is that parents of autistic children in our
sample engaged in relatively high levels of problemfocused coping.

Problem-focused coping has led to more positive
outcomes for parents of children with many
disabilities, and parents of ASD show the same
results.
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DISCUSSION CONTINUED…
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Previous research supports the findings that
problem-focused coping in parents of children
with ASD leads to higher levels of maternal wellbeing, regardless of symptomatology (Gray, 2006;
Smith et al., 2008)
In recent years, more social support has been
available to parents of children with ASD:
increased Autism awareness campaigns
 spotlight articles in major magazines
 fundraisers for ASD, and many other social support
networks

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DISCUSSION CONTINUED…

Research supports previous studies on the “Down
syndrome advantage” and even surpasses the
“advantage” proposed by past research.

Even when controlling for all socioeconomic markers,
a significant advantage was found compared to all
other research populations.

In addition, we also found a “Down syndrome
advantage” when compared to the parents of typically
developing children.
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FUTURE RESEARCH
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Use more socioeconomic markers for research
comparison of groups
Complete a more in-depth analysis of types of
coping skills and strategies
Get more confirmation that our control group is
actually made up of parents of “typical” children
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QUESTIONS?
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