Psychological Health of Parents of Children with Autism Spectrum Disorder

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Psychological Health of Parents of Children with
Autism Spectrum Disorder

• Ayca Coskunpinar Cody Davis
• Hanover College

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Autism Spectrum Disorder

• Autism Spectrum Disorder is an umbrella term for
  5 variations of Pervasive Developmental Disorders
• Autistic Disorder
• Retts Disorder
• Childhood Disintegrative Disorder
• Aspergers 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

• 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/development
  al_disabilities.cfm

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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).
• http//www.nichd.nih.gov/health/topics/development
  al_disabilities.cfm

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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

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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
• 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

• 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
• Parents_of_special_needs_kids_DE_MD_PA_at_yahoogroups
  .com
• Timetotalk

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Materials

• Demographic Survey
• Stress 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)

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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.

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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

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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.

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Reliability

• Depression Scale ? .849
• Stress Scale ? .869
• Coping Scale (Problem Focused) ? .794
• 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 lt .001)
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Parents of children with Down syndrome were
significantly less stressed than parents of
children with Fragile-X (p lt .001) and parents of
typically developing children(p lt .01)
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Parents of children with Autism (p lt .001), Down
syndrome (p lt .05), and Fragile-X (p lt .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 lt .05), and
parents of children with Fragile-X (p lt .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 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.

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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

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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

• 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?