1. Ayca Coskunpinar & Cody Davis Hanover College
Psychological Health of Parents of Children with Autism Spectrum Disorder
Ayca Coskunpinar & Cody Davis
Hanover College

2. Autism Spectrum Disorder
Autism Spectrum Disorder is an umbrella term for 5 variations of Pervasive Developmental Disorders
Autistic Disorder
Rett’s Disorder
Childhood Disintegrative Disorder
Asperger’s Disorder
PDD-Not otherwise specified
Let’s begin by defining ASD. According to the DSM-IV, ASD is ….. Perhaps the best know of these disorders is Austism … but ASD also includes ….

3. Characteristics Of Children with ASD
Challenges in communicating
Difficult behaviors
Social isolation
These disorders differ in important ways, but all are characterized by … To give you a better sense of these characteristics, we want to show you a brief video …

4. Psychological Health of ASD Parents
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)
Given these characteristics, researchers are paying some attention to the psychological health of parents of children with ASD. And, indeed, prior research …. The reasons for the higher stress levels are multiply-determined, but include …
Child’s behavior and conduct problems were most strongly related to parent stress, rather than the severity of developmental delay, or adaptive skills. State that we know it is challenging for parents whose children have autism, followed by the question whether these challenges are greater than or different from challenges faced by parents of children with other disorders

5. 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
For the purpose of our study we chose as our comparison groups, two other NSD (define) including Fragile X and Down syndrome. Fragile-X…

6. Down syndrome
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).
Down Syndrome is… Much research on Down syndrome seems to have a different spin than the previous two disabilities. More and more research is showing…
This finding led us to another article that suggested a couple interesting points involving both Down syndrome and ASD.

7. “Down syndrome advantage”
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”
Ours is not the first study to do these sorts of comparisons. In fact, quite a few studies have identified a DS advantage wherein parents of … However, …. in other words, what has been taken to be an “advantage” associated with raising a Down Syndrome child, may be somewhat spurious and simply reflect the fact the DS parents tend to be older and, thus, more financially stable. After income levels are controlled, the only group that shows higher levels of stress than DS parents is parents of autsitic children. Which lead Stoneman to suggest that future research should explore the possibility that there is an autism disadvantage. That is, that parents of autistic children may show more psychological distress than other groups, including higher levels of stress, higher levels of depression, and poorer coping strategies. The reason may be that … (perhaps talk about behavioral issues) ?? That’s where our study comes in …
Parents of children with Down syndrome experience less depression and pessimism than parents of children with other intellectual and developmental disabilities.

8. 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?

9. 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.

10. Participants 114 volunteer parent participants Male = 14, Female = 100
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

11. Internet Sites Used to Gather Data
Down syndrome
DownSyn Forum
Fragile-X
Fragile_X_Michigan
Fragile X Yahoo Group
Autism Spectrum Disorder
ds-autism
Other sites and support groups used included:
Timetotalk
Parents of “typical” children were not collected from any specific web-blog apart from those used for specific disorders.

12. Materials Demographic Survey Stress Scale Depression Scale
The Parental Stress Scale (PSS)
Depression Scale
Center for Epidemiologic Studies Depression Scale (CES-D), NIMH
Coping Scale
The Ways of Coping Inventory (WoC-Abbr)

13. The Parental Stress Scale (PSS)
There are 18-items on the scale with higher averages indicating higher levels of stress.
Scoring:
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.
Mention that participants were asked to answer these question specifically about their child with the disorder.

14. Center for Epidemiologic Studies Depression Scale
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
Measures the number of depressive symptoms that respondents have experienced in the last week and how often the respondent has experienced these symptoms

15. The Ways of Coping Inventory
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: Problem- Focused Coping and Emotion Focused Coping
PFC: Made a plan of action and followed it.
EFC: Criticized or lectured yourself.
Problem-Focused coping is generally associated with better outcomes.
Or EFC: Blamed yourself.

16. Reliability Depression Scale:  = .849 Stress Scale:  = .869
Coping Scale (Problem Focused):  = .794
Coping Scale (Emotion Focused):  = .755

17. 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.
Tests need to be re-run after cleaning the data set (we have to exclude some participants who did not indicate the diagnosis, because there were only 5 of them).

18. Down syndrome parents were less depressed than all other groups (p < .001)

19. 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)

20. Parents of children with Autism (p <. 001), Down syndrome (p <
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.

21. ASD advantage in EFC over Down Syndrome as well at p >. 05
ASD advantage in EFC over Down Syndrome as well at p > .05. There was a marginal significance found as parents of children with Autism used more emotion focused coping than both Down Syndrome (p > .05) and Fragile-X (p > .05) groups.
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)

22. 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 problem-focused 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.
Despite our hypothesis that parents of children with ASD practice poorer coping strategies, we found that the parents actually…
More social support for parents with autism in later years

23. Discussion Continued…
Previous research supports the findings that problem-focused coping in parents of children with ASD leads to higher levels of maternal well- being, 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
… parents of these children have more resources available for their coping than ever before.
There is even a trend in our data that indicating that parents of ASD children engage in the highest levels of PFC, which may help to explain we did not see an autism disadvantage among this sample.

24. 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.
Our typical children may not be so typical as their parents are participating in support groups… kids may be doing drugs, have other behavior, etc.

25. Future Research
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

26. Questions?