When a parent hears that his or her child has autism, one of the first things he or she feels is overwhelmed. Overwhelmed by therapy options, meetings with schools and how to navigate the maze of services available.
San Francisco Bay Area blogger Jennifer Byde Myers was told in 2004 that her son Jack, then 4, had autism, and she was relieved to have one word to describe his challenges. She was also frustrated by what she felt was a lack of good, solid, rational advice out there for parents like her.
“There wasn’t anything to tell me, ‘Here is autism, and here’s what you need to do next, and this is where to start with school, and here are the types of therapists you will work with and what they do,’ ” Myers said. “I felt alone, and it was very frustrating.”
She launched a blog, the Thinking Person’s Guide to Autism, with Shannon Des Roches Rosa and Liz Ditz in 2010. Emily Willingham and Carol Greenburg joined the team shortly thereafter, and the five women edited a book, by the same name, of essays from parents of children with autism, adults with autism and professionals who work with people with autism. The book was published in November.
I recently interviewed Myers by phone and e-mail. We talked about the book, about increasing public acceptance of autism and about her journey with Jack. Here are excerpts from that conversation.
You have said that this is the book you wish you’d had when your child was diagnosed. How so?
The information out there kept trying to convince me that autism was this very bad thing that my child was afflicted with, and I guess I’m lucky that I never went through a phase like that. My son is not sick or broken. He is whole and worthy just as he is. He has a lot of challenges, and he may always have a lot of challenges, but there weren’t any books that could help me get past all of the stereotypes and myths.
We wanted to bring great information into one place to make it easier to fast-forward through the negativity and the fear. We wanted something that could help people think critically, calmly, rationally, even as they enter this whirlwind of information.
Why is it the “thinking person’s” guide?
We want to help people make good decisions with how they spend their time, money and emotion. There are many voices out there touting approaches that are useless at best, and potentially dangerous at their worst. ... There is always someone out there trying to make a buck off of people who feel desperate, often parents, who get wrapped up in the idea that their child can be “fixed,” which is really so disrespectful to autistic people, and tragic when people talk that way in front of their children. Some, really most, of these approaches are also very expensive — vitamins that cost hundreds of dollars a month and other special diets that can strain a grocery budget. Families don’t need that kind of financial stress, spending money on things that are not backed by mainstream science. We want to present carefully curated, science- and evidence-based information to get people on their way.
You seem to place a lot of emphasis on moving beyond autism awareness and advocating for acceptance. How do we get there?
It has not always been easy, but more and more we have built a community where people can learn from each other. Parents are learning that using “cure” language is really offensive to an adult with autism who does not want to be cured, and adults with autism are teaching the neurotypicals among us how to advocate with them instead of for them. Adult autistics are sharing their experiences, and that helps people like me work towards getting the right services for young adults and tweens that are about to enter the next phase of their life. We’ve put people together so they feel supported.
We are not done by any means. ... This is about changing attitudes, about accepting neurodiversity and working for accommodation.
How do you think it helps to have voices of adults with autism represented in your book?
The adult voices in the book, and in my life now on a regular basis, have been one of the most important parts of this project for me personally. I have always treated my son with respect, assuming that he understands me, presuming competence, and I have always expected the world should be nice to him. ... Holding the rest of the world to the same standard as we have in our family is harder, but worth every amount of advocacy. It has made such a difference in how much more often Jack interacts since we have been asking others to be more respectful. Say hello to Jack, engage him as if he has an opinion, because we know he does, and take the time to wait for him to answer.
Another benefit that adult voices bring is a more concrete picture of the future. I think many parents of young children on the spectrum either don’t want to see this as a lifelong part of their child, or they just can’t imagine how their child will ever be an adult, but I think that engaging with adults on the spectrum can help us understand our children, and perhaps help see where they are headed.
Is acceptance and understanding becoming more important than trying to find treatments? If so, why?
I do want my son to have an easier time with some of his challenges. He gets frustrated, and no parent likes to see his or her child frustrated. I know adult autistics who would like to be less overstimulated by their work environments, or public transit. I think my mind is focused on accommodation, acceptance and adaptation.
It’s okay for me to accept my autistic child, all of him, and still want him to be able to communicate his needs effectively. I don’t need to hate autism to want him to develop better self-help skills. Acceptance doesn’t mean not changing, or not wanting a better life for autistics. For our family it means giving our son the best life we can and helping him reach his potential without trying to excise parts of him to make him more “normal.”
I think scientific research is still important, I think that creating therapies that help kids get through school with more success is important, and creating services that help autistic adults lead more satisfying, fuller lives — these things are important, but the biggest impact that we can make in the lives of most people on the spectrum is acceptance that each of our brains works differently.