PTSD and Autism Parents

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

Michelle Stewart and colleagues have an article in Research in Autism Spectrum Disorders titled Challenging Child Behaviours Positively Predict Symptoms of Posttraumatic Stress Disorder in Parents of children with Autism Spectrum Disorder and Rare Diseases.  The abstract:

Background

This study investigated the validity of conceptualising elevated stress in parents of children who exhibit challenging behaviour within the framework of posttraumatic stress disorder (PTSD). It was hypothesised that parents of children with autism spectrum disorder (ASD), and parents of children with a rare disease would endorse greater PTSD symptomatology than parents of typically developing (TD) children, and that challenging child behaviours would positively predict PTSD symptomatology.

Method

The Life Events Checklist for DSM-5, Developmental Behaviour Checklist (Parent) and PTSD Checklist for DSM-5 were administered to 395 parents.

Results

Significantly more PTSD symptomatology was reported by parents of children with ASD and parents of children with a rare disease than parents of TD children, and challenging child behaviours positively predicted PTSD symptomatology in both groups.

Conclusion
A PTSD framework may validly explain elevated stress among some parents of children with ASD and parents of children with a rare disease, and has important implications for support delivered to parents by healthcare providers.

Autism Risk: Media Attention v. Scientific Evidence

At the New York Times, Princeton's Sam Wang compares the media attention and scientific evidence about autism risk:

For a variety of studies I asked the same question: How large is the increased risk for autism? My standard for comparison was the likelihood in the general population of autism spectrum disorder. Here’s an example. Start from the fact that the recorded rate of autism is now 1 in 68, according to a report released last week by the Centers for Disease Control and Prevention. If babies born in purple farmhouses have a rate of autism of 2 in 68, this doubling means that the purple farmhouse carries a risk ratio of 2. However, correlation is not causation, and there is no need to repaint that farmhouse just yet.

We can improve our chances of finding true causes by looking before the age of 2, when it becomes possible to diagnose autism. The risk ratio can give perspective where isolated news stories don’t. Media reports have focused on the risk associated with becoming a mother or father in one’s late 30s or after. The story has obvious appeal: Delayed parenthood is common, and readers are understandably anxious. However, parents-to-be should consider that the individual risk to the child is only around 1.4. The risk associated with enhanced or accelerated labor in full-term babies is about 1.2, after other complications are taken into account. And of course, the risk from vaccination is slightly less than 1 — there is no added risk. Even worse, incorrect beliefs about vaccines come with a cost. The return of measles in communities with falling vaccination rates is one recent example.

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A highly underappreciated prenatal risk is stress. For pregnant women who take the sometimes-wrenching step of emigrating to a new country, for example, the risk ratio is 2.3. In the fifth through ninth months of pregnancy, getting caught in a hurricane strike zone carries a risk ratio of about 3. Maternal post-traumatic stress disorder during pregnancy is associated with a similar effect. These events are likely to trigger the secretion of stress hormones, which can enter the fetus’s bloodstream and affect the developing brain for a lifetime. Stressors may also lead to maternal illness, the immune response to which may interfere with brain development.

Parents and Stress

Back in 2004, Jane Gross wrote in The New York Times: "With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance." New studies confirm that parenting ASD children is stressful. This finding comes as no surprise to these parents -- trust me on that -- but as Alison Singer reminds us, it is important to have systematic published research on all aspects of the issue -- even when it merely documents what people know already. Stress levels are an important element in the politics of autism, too. Stressed-out parents may lack the time and energy to engage in legislative and regulatory advocacy outside their individual cases.

Both the studies are in the Journal of Autism and Developmental Disorders.  IMPORTANT NOTE:  THROUGH NOVEMBER 30, FULL-TEXT DOWNLOADS AT THIS JOURNAL ARE AVAILABLE FOR FREE:  THAT IS REALLY IMPORTANT TO KNOW IF YOU WANT TO BACK UP YOUR ARGUMENTS DURING AN IEP. 

See here for a discussion of IEP-relevant literature.

Fatigue, Stress and Coping in Mothers of Children with an Autism Spectrum Disorder, by Monique Seymour, Catherine Wood, Rebecca Giallo and Rachel Jellett.  Abstract:

Raising a child with an autism spectrum disorder (ASD) can be exhausting, which has the potential to impact on parental health and wellbeing. The current study investigated the influence of maternal fatigue and coping on the relationship between children’s problematic behaviours and maternal stress for 65 mothers of young children (aged 2–5 years) with ASDs. Results showed that maternal fatigue but not maladaptive coping mediated the relationship between problematic child behaviours and maternal stress. These findings suggest child behaviour difficulties may contribute to parental fatigue, which in turn may influence use of ineffective coping strategies and increased stress. The significance of fatigue on maternal wellbeing was highlighted as an important area for consideration in families of children with an ASD.

The Association Between Mental Health, Stress, and Coping Supports in Mothers of Children with Autism Spectrum Disorders, by Benjamin Zablotsky, Catherine P. Bradshaw and Elizabeth A. Stuart.  Abstract:

Raising a child with an autism spectrum disorder (ASD) can be a stressful experience for parents. When left unmanaged, high stress levels can lead to the development of depressive symptomatology, highlighting the importance of coping supports. The current paper examined the stress level and psychological wellbeing of mothers with a child with ASD in a national survey. After adjusting for child, mother and family level characteristics, it was determined that mothers of children with ASDs were at greater risk for poor mental health and high stress levels compared to mothers of children without ASDs. The presence of maternal coping strategies, in the form of emotional and neighborhood social supports, as well as strong coping skills, reduced these risks between models.

Divorce, Families, and Older People with ASD

An earlier post dealt with the "divorce myth," the notion that parents of autistic children are more likely than others to break up. Unfortunately, one study suggests, it becomes less of a myth as the children grow up. From the University of Wisconsin:

The parents of grown children with autism are more likely to divorce than couples with typically developing children, according to new data from a large longitudinal study of families of adolescents and adults with autism.

The study, published in the August issue of the Journal of Family Psychology by researchers from the University of Wisconsin-Madison's Waisman Center, paints a new picture of the prospects of long-term marital success for parents raising a child with autism.

The study is the first to track marital history of parents of adult children with autism. It reveals that, in contrast to previous assumptions, parents do not have a greater risk of divorce when their son or daughter with autism is young. However, as the child with autism grows into adolescence and adulthood, parents are more likely to divorce than are parents of typically developing children. Although findings reveal diminished prospects for a lasting marriage for parents raising a child with autism, the majority of marriages in this study survived.

The study compared the marital fates of 391 couples — the parents of adolescent and adult children with autism — to a sample drawn from another large longitudinal study, the National Survey of Midlife in the United States (MIDUS). The goal of the study was to document the rate and timing of divorce of parents of children with autism, explains Sigan Hartley, a UW-Madison assistant professor of human development and family studies and lead author of the report.

...

There is a lifelong profile of challenging behaviors and symptoms associated with autism," Hartley notes. "Few developmental disabilities appear to be more taxing on parents and there is a great need for support services for families when the child is an adolescent and adult. Providing support for couples to help them work on their marriages is an obvious step. If we can get information and support to these families, we hope to be able to support lasting marriages."

The new study compares data from two large longitudinal studies, the Adolescents and Adults with Autism Study, directed by Marsha Mailick Seltzer, a UW-Madison professor of social work and director of the Waisman Center, and MIDUS, directed by UW-Madison psychology professor Carol Ryff. Both studies are funded by the U.S. National Institutes of Health.

Parental Stress

Mara Gay writes at AOL News:

"I wish I could convey to you what it is like to raise a child on the [autism] spectrum who is escaping the house," Mara LaViola, whose son has autism, told WFAA Dallas. "You find them on top of your kitchen cabinets. Breaking things. Throwing things. Most of the time it's because they're trying to communicate and they're not able to."

But the parents are offering no excuses for Saiqa Akhter, 30, who allegedly dealt with that stress by killing her 5-year-old son, Zain, and her 2-year-old daughter, Faryaal.

"Children are not appliances that come with warranties and guarantees," [Kim] Stagliano wrote on her Age of Autism blog Wednesday afternoon. "Some have autism." But the Fairfield, County, Ct. mom said she's able to cope because she has a great support network that she can talk to. "I assume this woman in Dallas did not have any support network," she said. "It can be really lonely."

CNN adds:

Several research studies have found that mothers of children with autism have higher levels of psychological and parenting-related distress than other moms of children with developmental delays.

It can be overwhelming, said Marguerite Colston, vice president of the Autism Society, which has local chapters throughout the country.

"Once you get a diagnosis, you can't be a parent, you have to be a case manger, an education specialist," she said. "You've got to figure out the medical system. It's overwhelming to think I have to advocate and navigate the system. The level of stress is terrifying."

"Our nation doesn't have the system to support the parents. The services are not there to match the needs."

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The pressure is not limited to minority communities, as parents of children with autism experience anxiety and depression regardless of their socioeconomic group or race, said Dr. Wendy Stone, director of the University of Washington Autism Center in Seattle.

"Parents who have less access to information, resources or to a community of parents who have similar experiences or needs are clearly going to have a more difficult time managing both their child and their own health," she said.