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’s 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’s 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.)
Parents with autism may face practical challenges borne of their condition. For example, many people with the condition struggle with executive function, the set of complex mental processes that allow people to plan and carry out daily activities. They also have a tendency to become deeply immersed in what they are doing—to the detriment of other priorities. Hurley says in her case, this has made it difficult to meet the logistical demands of raising her children, such as getting them to school on time, and keeping them clean and fed. When her children were younger, she would write out step-by-step lists to help her accomplish daily tasks: Get the bottle ready. Make the food. Give the bottle and the food to the child. Put the plates in the dishwasher. Wipe the table. Check the floor for crumbs. See if the child is clean.