Having autism as a parent might seem impossibly challenging. But a generation of parents with the condition is showing that it can be an advantage — even when their child does not share the diagnosis.
BY SARAH DEWEERDT16 MAY 2017
It’s going on 8 p.m., and Kirsten Hurley’s house in West Cork, Ireland, is a scene of happy chaos. The children — Alex, 9, and Isla, 4 — have been promised chocolate if they stay out of their mother’s hair while she talks with a journalist via Skype.
But the bribe doesn’t seem to be working — at least not with Isla, who climbs up her mother’s back and somersaults over her shoulder, cackling with delight.
“This is something that drives me nuts,” Hurley says. The nonstop and often intense sensory inputs that come along with being a parent — being grabbed at, being climbed on, listening to the drone of “Mom, Mom, Mom, Mom, Mom” — can be difficult for her to handle because she has a mild form of autism sometimes known as Asperger syndrome.
Hurley was diagnosed with Asperger syndrome at age 23, when her son was about 14 months old. Alex received his own autism diagnosis about a year later. (In the United States, Asperger syndrome was subsumed into the larger category of autism spectrum disorder in 2013, but in Ireland and elsewhere it remains a distinct diagnosis.)
In some ways, their shared condition has made it easy for Hurley to parent her son. “Alex always kind of seemed really logical to me,” she says. Isla, by contrast, does not seem to be on the spectrum, and her ordinary preschooler behavior sometimes baffles her mother. She has an insatiable need for attention, from Hurley’s perspective, and she might do something like reject a cup of orange juice moments after specifically requesting orange juice. “The things she does that I think are really abnormal because Alex didn’t do them are actually, like, typical children things,” Hurley says, laughing.
Hurley handles many such puzzles of being a parent on the autism spectrum with self-awareness and a healthy dose of humor. But at times, when she has reached out for help she has been misunderstood. Hurley once mentioned to a new therapist she was seeing that she has Asperger syndrome. The therapist asked if she loved her children — “which wasn’t very helpful,” Hurley says. “People have these kinds of misconceptions about people with autism, that they don’t feel emotion.”
Hurley is not so far out of the ordinary as one might assume: A surprising number of people diagnosed with autism are raising children. An online survey recruited more than 300 mothers with autism, suggesting that there are probably thousands of parents diagnosed with autism worldwide, and perhaps hundreds of thousands or millions without a diagnosis. More evidence comes from Facebook groups, messaging platforms and blog comments, where parents compare notes and share problem-solving strategies.
Autism can pose challenges for parenting, their stories indicate. In addition to dealing with sensory overload, helping a child learn social skills can be difficult for people who struggle with social interactions themselves, for example. But autism can also provide valuable parenting skills, especially with a child who is also on the spectrum.
Still, as far as the scientific literature is concerned, these parents might as well not exist. It’s only in the past few years, since scientists have become interested in studying adults with autism, that they have begun to ask questions about this group of parents. “I think what we’re seeing now in the 21st century is a recognition that people with autism are perfectly capable of participating in all aspects of life, but they may have been doing that almost invisibly — and that includes parenthood,” says Simon Baron-Cohen, director of the Autism Research Center at the University of Cambridge in the United Kingdom.
Dance with me: Gillan and Lizzie Drew with their daughter Izzie, at their home near Christchurch, England.
The lack of research so far not only offers these parents little support, but also leaves society unprepared for the larger wave of people diagnosed with autism who are just coming of age and may be considering having children. Without enough information or support available to them, these young people may conclude that becoming a parent is just not an option for them.
“It breaks my heart to even say those words, but that’s the message that I’ve heard: ‘Does having autism or Asperger’s, does that mean that being a parent is just not a thing for me?’” says Matthew Lerner, assistant professor of psychology, psychiatry and pediatrics at Stony Brook University in New York. The experiences of Hurley and many other parents who are pioneering what it means to be a parent with autism could temper that worry with hope.
The idea that a person on the spectrum could be a parent was long considered nearly impossible. When Edward Ritvo submitted a paper on the subject to the Journal of Autism and Developmental Disorders in 1988, he titled it “Eleven possibly autistic parents.” Without that caveat, he says, he is pretty sure it would never have been published.
“That paper was rejected eight times by eight of the major psychiatric and medical journals,” says Ritvo, now professor emeritus of psychiatry at the University of California, Los Angeles. “Nobody believed it. They didn’t believe the parents had it, that autistic people could grow up and marry and have children.”
At the time, autism was perceived as a severe disorder, usually accompanied by intellectual disability, and the overwhelming emphasis of research was on children with autism. Yet the parents who appeared in that brief paper had characteristics that are now easily recognizable as features of autism: repetitive behaviors such as arm flapping and rocking back and forth, unusual rituals such as arriving exactly 30 minutes late for every engagement, social disinterest, a lack of eye contact.
Further publications from Ritvo’s team made it clear that it wasn’t an anomaly for people on the spectrum to have children: A 1994 paper described 14 people with autism who had 54 children among them. Most of them were parents of children that Ritvo’s team had seen in the clinic. Ritvo and his colleagues had become interested in these parents because they wanted to show that autism is a physiological condition with an inherited basis — and not, as was widely believed through the 1960s and 1970s, the result of psychological trauma.
Family feeling: Both parents are on the spectrum; their daughter Izzie does not seem to be.
These observations helped launch the study of autism genetics. Meanwhile, the lives of these parents went unexamined. Even now, no one knows what proportion of adults with autism have children, what proportion of their children might end up on the autism spectrum, or how common it is for children with autism to have a parent who also has the condition. And those basic questions don’t even begin to explore what life is like for parents with autism: their struggles with parenting, the strengths they bring to the task of raising children, how their hopes and fears evolve as their children grow up.
Virtually the only empirical study of the experiences of parents with autism is an online survey of 325 mothers diagnosed with autism worldwide, conducted by Baron-Cohen’s team. The unpublished data capture responses to 89 questions devised with input from women with autism. They include topics such as pregnancy and childbirth, the social experience of motherhood and the strengths and weaknesses of parents with autism.
The mothers with autism in the survey were more likely to report prenatal and postnatal depression compared with a group of 91 typical women raising at least one child with autism. They were more likely to feel isolated, and judged by others; many said they didn’t have anyone to turn to for support, and often felt unable to cope with parenting.
For some parents, the prejudice and stigma surrounding autism can have dire consequences. Damon Matthew Wise Âû and his wife saw firsthand that parents with autism are vulnerable to extra scrutiny from child welfare agencies. Wise Âû is a pioneer of the self-advocacy movement by people with Asperger syndrome and lives in Shannon, Ireland. His wife, Karen, is also on the spectrum, as are their three children, who also suffer from chronic ailments such as food intolerances, insomnia and skin conditions.
Since their youngest child was born in 2003, Wise Âû and his wife had occasionally used respite care, or temporary childcare, through the foster-care system for a few hours or a weekend. By mid-2009, with the encouragement of social workers, the younger two children were spending a few days out of the home each week. But in early 2010, the couple learned that child welfare authorities had started efforts to put all three children into full-time, permanent foster care. According to Wise Âû, the authorities never gave any legal justification for this plan. He says the episode reflects prejudice on the part of child welfare agencies that people on the spectrum aren’t suitable parents. Finally, in May 2010, the agency dropped its plan.
Wise Âû’s oldest son wasn’t diagnosed with Asperger syndrome until he was almost 16, though his parents had suspected he was on the spectrum since before he was 2 years old. Doctors and social workers “thought we caused him to exhibit autistic traits, by learning it from us,” Wise Âû recalls. The doctors suggested that the couple wanted their son to be on the spectrum — as if they had Munchausen syndrome by proxy, a psychiatric disorder in which people feign illness in their children in order to draw attention to themselves.
The couple also felt excluded by support groups for parents raising children with autism. In those groups, they sometimes encountered the sentiment that the condition is a tragedy, or a disorder to be cured. “We have been kicked and shunned for being parents who are autistic with autistic children,” Wise Âû says. (They set up a Facebook support group of their own, where talk of cures is discouraged.)