How can parents who are disability community outsiders learn what it's like to be a kid with special needs? How can our kids best learn to accept themselves? By listening to and learning from disability community insiders, of course. By looking to them as role models. I have come to realize that there is no substitute for an autistic person if I want to better understand my autistic son Leo, or for him to enjoy socializing.
Leo's kind of autism is not subtle. It's intense. He's not much for speaking, or reacting to questions in expected ways -- though he usually does hear what's said, and respond in his own way. Sometimes his autism means exuberant whooping and galloping in great big circles with no concern for social propriety. Sometimes it means traipsing back and forth along the front of a giant aquarium, taking everything in:
Many people assume Leo wouldn't have much in common with Zoe, an adult autistic college student -- probably because Zoe can speak in a more typical manner than Leo does. That doesn't mean she's not autistic -- it means others don't always perceive the effort she puts into communicating and getting through her day. As reported by Amy Harmon:
Zoe Gross, 21, whose autism spectrum disorder was diagnosed at age 4, says masking it can take a steep toll. She has an elaborate flow chart to help herself leave her room in the morning (“Do you need a shower? If yes, do you have time for a shower?”).
Zoe works tirelessly to help others comprehend what autistic people like her and Leo need, and what rights they deserve. And Zoe gets Leo, as does their mutual friend Julia Bascom. The four of us recently visited a local science center with our journalist friend, Steve who is working on a book about autism. I was so relieved that Leo could just be Leo among people who considered him fun and adorable -- no qualifiers.
Leo stims, Zoe and Julia stim. If Leo wants to fiddle with his green straw, flick it in front of his eyes; if Leo is desperate to feel textures around him, like elbows; if Leo finds it comforting to hum and rock, Julia and Zoe don't just accept and understand his behaviors -- they're often kind enough to let me know what Leo might be experiencing, what his motivations are. When I recently posted a video of Leo having a blast pacing a circle at a playground, Zoe commented:
Oh wow, what a great video. That pacing looks delicious (delicious is a food word, but acceptable here because I refer to a pleasurable and nutritious component of one's sensory diet). There's a certain size of circle you can pace -- the one Leo's doing here looks about perfect for his height -- that gives you a sensation of pressure in your body, when you find yourself leaning inward to stay on course.
I wish I could provide that kind of insight myself, but ... I can't. I may have nervous tics like hand-wringing and hair-twisting, but they are not stims or ways to self-soothe or regulate -- they are stress gauges. So I will admit to envying the synergistic mother-son relationship described by Carol Greenburg at Parents.com:
One of the nicest parts of parenting an autistic child from an autistic vantage point is that I feel my son and “get” each other in special way that encourages teamwork between us. His autism and therefore his need for assistance is more evident than mine, but he isn’t content to just receive help. He wants to offer help too. [...] My son is one of the few people I can count on to never, ever laugh at me for that sort of thing, and that makes me feel safe around him.
This lovely understanding is why I get depressed when parents of people like Leo attack autistic self-advocates. The primary complaints in these scenarios are assumptions that autistic people who speak or write with fluency cannot possibly understand the needs of autistic people like Leo who communicate differently. As though autism is only about communication. As though every autistic self-advocate burst forth fully formed as their adult selves, and couldn't possibly have had a childhood similar to Leo's -- but with far fewer supports, resources, and societal awareness of autism as a spectrum scenario.
It's important not just for parents but for anyone who cares about an autistic person (or about being an autistic person) to get informed about the range of autistic experiences. A good starting point is April's Slice of Life series at Thinking Person's Guide to Autism, which features interviews with autistic people of all ages and abilities. The series was such a success that parents of children with cerebral palsy, Down syndrome etc., began wondering why they didn't have a Slice of Life series in their community, to provide their kids with role models. (Someone should get on that.)
While I am grovellingly grateful for the squadrons of professionals, teachers, and therapists who have helped me understand what Leo needs to succeed at school and at life in general, they too can learn from autistic adults. Two months ago Leo developed a scab underneath his nose after a horribly runny nose led to compulsive nose-picking. He couldn't stop tearing off his scab, and everyone on our boy's team was at wits' end. Then an autistic friend casually mentioned how she shared Leo's skin picking compulsion, and suggested we give him a substitute behavior that would provide similar sensory feedback -- like placing scotch tape strips or drying Elmer's glue on his arms. We share the suggestions with Leo's team at school and home, and tried them on him ourselves. I thought Leo might find the suggestions distressing, but he didn't -- and they really helped his poor nose heal up.
A word about caution and respect: while many autistic adults are gracious about sharing their experience and time with kids like Leo, parents should not assume all adults in the disability community have this interest or inclination. (Just as being a parent doesn't mean I want to spend time with other peoples' children. No offense.) But when the relationships do flourish, they can be delightful.
The most popular autistic self-advocacy motto is "Nothing About Us Without Us." I hope more parents will start viewing that motto as an invitation to look to autistic adults as their children's role models and community.
Further recommended reading: writings by autistic people like Julia, Zoe, Amy Sequenzia, Amanda Baggs, Paula Durbin-Westby, and the contributors to the Autism Women's Network. I could list another 50, but this is a good start.
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