When Jenna Gensic’s son was diagnosed with an autism spectrum disorder, she began to do her research. She gathered advice from the usual experts—doctors and therapists. But she felt she was still missing an important perspective.
“I realised one resource I hadn’t accessed was the autistic community,” Gensic says. “I wanted to get more of their input and advice on what they thought helped or hurt them growing up.”
And what she learned was so different than she expected—and helpful in guiding the way she parented her own son—that she expanded her research and turned it into a book for other parents: What Your Child on the Spectrum Really Needs: Advice from 12 Autistic Adults.
When Gensic began her interviews, she expected that most people would talk about different therapies or strategies they’d tried and what had or hadn’t been helpful or successful; instead, people wanted to talk about how they were treated.
“A lot of experts in their lives growing up tended to talk about what autistic people can’t do well,” she says. “They were constantly living their lives trying to overcome these symptoms ... But they wanted to be accepted and live life with a positive autistic identity, not to grow up in a world where they’re hiding their autism to fit in.”
There can be such a focus on some of these symptoms or behaviours, such as rocking or hand-flapping, because parents don’t want their kids to be bullied. Many of the adults Gensic interviewed, though, said that constantly trying to mask behaviours that helped them self-regulate was exhausting. The problem, she realised, was equating fitting in with success.
“I’ve talked about my son’s diagnosis from a very young age,” she says. “It’s not viewed as bad; this is just who he is and how he lives. We talk about autism as a collection of a different ways of thinking. He has an autistic brain, I have a neurotypical brain; it’s a neutral topic.”
Many of the people Gensic interviewed talked about therapy and the need for that type of support—but they also wished they’d had more input, particularly around what goals they wanted to set for themselves.
“I remember one contributor saying that social skills are the only thing anyone wants to talk about,” Gensic says. “But it’s last on her list of things she wanted to focus on.”
Although parents and professionals need to help guide what types of strategies are used or what the focus will be, especially when kids are very young, giving them a voice and including them in the conversation is also important.
“It’s possible for a child or an adolescent or a young adult to decide what their goals are and what they want to work on,” Gensic says. “And it’s much more effective because they’re doing the things they want to do.”
The relationship between the therapist and client is also key, many contributors told her. The child needs to feel understood and accepted.
Since writing her book, Gensic has continued to interview adults with autism—she’s now interviewed more than 100 people (and counting) for her blog to provide additional insight for parents of children with autism.