Advice for Parents of Children With Autism From Adults With Autism
When Jenna Gensick’s son was diagnosed with autism spectrum disorder, she began her research. She has collected the advice of ordinary experts – doctors and therapists. But she felt she was still missing an important perspective.
“I realized that one resource I didn’t get access to was the autistic community,” says Gensik. “I wanted more feedback and advice from them on what they think helped or hurt them as a child.”
And what she learned was so different from what she expected – and helped guide her in the way she raised her own son – that she expanded her research and turned it into a book for other parents: What Your Child Really Needs on spectrum: advice 12 Adults with autism .
Desiring acceptance
When Gensik began her interviews, she expected most people to talk about the different therapies or strategies they tried and what worked or didn’t; instead, people wanted to talk about how they were being treated.
“Many experts in their childhood life tend to say that autistic people don’t do well,” she says. “They constantly lived their lives trying to overcome these symptoms … But they wanted to be accepted and lived with a positive autistic identity, not to grow up in a world where they hide their autism in order to adapt.”
There may be some focus on some of these symptoms or behaviors, such as swinging or waving their arms, because parents do not want their children to be bullied. However, many adults interviewed by Gensic said that constantly trying to mask behaviors that help them self-regulate is exhausting. She realized that the challenge was adapting to success.
“I talked about my son’s diagnosis from a very young age,” she says. “This is not considered bad; it’s just who he is and how he lives. We talk about autism as a collection of different ways of thinking. He has an autistic brain, I have a neurotypical brain; it’s a neutral topic. “
Having input
Many of the people surveyed by Gensic talked about therapy and the need for such support, but they also wished they had more information, especially about what goals they wanted to set for themselves.
“I remember one participant said that social skills are the only thing anyone wants to talk about,” says Gensic. “But this is the last thing on her list of things she would like to focus on.”
While parents and professionals should help guide what types of strategies are used or what will be the focus, especially when children are very young, it is also important to give them a voice and engage them in conversation.
“A child, teenager or young adult can decide what their goals are and what they want to work on,” says Gensik. “And it’s much more efficient because they do what they want.”
Many participants told her that the relationship between therapist and client is also key. The child needs to feel understood and accepted.
Since writing her book, Gensik has continued to interview adults with autism – now she has interviewed over 100 people (and the number is growing) for her blog to provide additional information for parents of children with autism.