The next wave:

Until the 1990s, most people diagnosed with autism had a relatively severe form of the condition, and so were unlikely to have children. But greater awareness of autism, as well as a broadening of the diagnostic criteria, have led to a growing wave of people with milder forms of the condition being diagnosed — and therefore more parents and potential parents with autism.

An increasing number of people are being diagnosed in adulthood, including some who are already parents. “Very often, it’s the child’s diagnosis that prompts the [parent] to question and seek out a late-in-life diagnosis for themselves,” says Susan White, co-director of the Virginia Tech Autism Clinic in Blacksburg, Virginia.

These days, most parents with autism are in that situation — diagnosed after having children, and perhaps because of their children. In the future, most will know they have autism before becoming parents. They may face new challenges: others questioning whether they are capable of parenting, for example, or coping with confusing feelings if their child turns out to share their autism diagnosis — or doesn’t.

“I never wanted to be a father,” says Gillan Drew, who lives in a small village in southern England with his wife, Lizzie, who also has autism, and their nearly 2-year-old daughter. “I didn’t want to pass on either my autism or my depression.” Drew didn’t learn he has autism until he was 28, but he found out before meeting his wife and before deciding to become a parent. (His book for adults newly diagnosed with autism was released in March, and he also blogs at Aspie Daddy.) His wife — at the time, his girlfriend — badly wanted a child, and eventually Drew changed his mind. “It was almost a spiritual thing,” he says. “I was worried that I wouldn’t be able to cope, but what if I could? What if I was letting the possible pitfalls prevent me from experiencing the greatest thing I’d ever done?”

So far, their daughter Izzie doesn’t show signs of autism, which is a relief, he says, “just because I know how difficult it can be.” But it’s also a worry, especially for his wife. “She is terrified that as Izzie gets older she’ll sort of overtake her in social skills,” Drew says. He has found it fascinating to observe his daughter as she learns to share, to communicate her wants and needs, and even to play her parents against each other. It’s a second chance for him to learn social skills, but also a painful experience that throws his own social challenges into sharp relief. At playgroups, “she’s going in there and she’s learning, and while she’s learning, I’m kind of standing back learning while watching her,” he says. “But she’s better than me, because she’s doing it naturally.”

Drew is acutely aware of being a parent with autism, and constantly monitors himself to make sure he provides what his daughter needs. Before Izzie was born, he read multiple accounts written by adults who blame their difficult childhoods on a parent they suspect had autism. The parents described in many of these accounts were never diagnosed, and no scientific study has assessed the effects of having a parent with autism. Still, he was worried. He says his own father probably had autism. He remembers longing for praise, but his father would instead critique the drawings he brought home from preschool: “Move the eyes a bit over, and the nose is the wrong shape.”

The possibility that his child might similarly suffer gave him pangs — and Drew determined to alter his behavior in certain ways. He forces himself to go to child-friendly events with bright colors and loud sounds even though he finds them overwhelming, for example. He suppresses the urge to cringe when his daughter’s hands are covered with applesauce or oatmeal, not wanting her to pick up his abhorrence of mess and mushy textures. And he gushes over every piece of artwork his daughter produces. The irony is that his awareness of having a condition that makes it difficult for him to express affection has transformed virtually his every action into an expression of love.

Drew’s experiences have convinced him that people with autism need advice on topics that standard parenting classes and baby manuals don’t cover. “I’ve spent so much time focusing on [how] I need to kiss her, I need to cuddle her, that I suddenly realized the other day that I’ve never told her I love her,” he says. “And I thought, ‘Well that’s strange, because you’d think that would be a natural thing that you’d say, but it’s never once gone past my lips. So now I need to make a conscious effort to say, ‘Love you.’”

Unfortunately, that sort of help is hard to come by. Because both he and his wife have autism, the government dispatched a social worker to evaluate the family when his wife became pregnant. But once it was clear that the baby would not be in danger of abuse or neglect, she dropped the case. When the couple asked for more support from their own individual social workers, who help with issues such as employment and finances, they were told that parenting advice was out of their purview.

In fact, people like the Drews may actually be best suited to help researchers compile the targeted advice parents seek. “I think we have to start identifying cases of success, and find out what went right,” says White. Every parent has particular talents and weaknesses. But precisely because of their diagnostic label (and, perhaps, the tendency toward rumination that comes along with it), many parents with autism have spent a lot of time pondering things that others may take for granted — whether that’s practical considerations about organizing a day with an infant or toddler, or deeper questions such as how best to demonstrate love and care in the way their child needs. “I think a lot more about parenting than a lot of the other people I know,” Hurley says.

A few researchers are pushing to understand these parents’ needs, as a first step to offering solutions. Baron-Cohen plans to follow 40 mothers with autism and their babies from pregnancy until the children are 2. His team aims to track the babies’ development because they are considered at increased risk for autism, but also to ask about the mothers’ experiences. “We’re working to basically hear the views of women with autism,” Baron-Cohen says. For example, do women with autism feel able to advocate for themselves during prenatal appointments? Do they find support groups for new mothers useful? “We need to listen to them and find out what the experience is like,” he says.

Despite the ups and downs, for Hurley, parenting is a source of meaning and joy. “My house is mad, but I love it,” she says. During this evening’s Skype session, even her frustration is tinged with fondness. She pulls Isla onto her lap and folds her up in her arms. “Do you want a cuddle, will that calm you down?” she asks, hugging Isla tight as she leans over her laptop to resume her conversation. Later, when Isla grows restless again, Hurley calls to Alex, who shepherds his little sister out of the room to let his mother chat in peace.

“I know there are things that my kids will miss out on because I have the diagnosis. But I try and make up for it,” Hurley says. She is, for example, raising her children in an atmosphere of acceptance toward autism, which didn’t exist when she herself was growing up. For Alex especially, “I think in the future it will pay dividends that he’s been brought up in this place where autism is talked about positively and openly,” she says.

Though Isla isn’t yet old enough to leave her mother alone even for the duration of a phone call, Hurley is already thinking about one day being a grandparent. Her husband’s parents often take the children for sleepovers, and she hopes to do the same with her own grandchildren someday. When she shares this daydream, she doesn’t distinguish between her children: Parenthood is a possibility for both Alex and Isla.