Feel the Love

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Special Kids Need Adult Role Models | BlogHer »

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.

I may have to try that superglue thing.