I don’t have autism. I don’t have a child or a sibling or a parent with autism. What am I doing here? (Personally, I find that line of thought contemptible: that only those directly affected by autism should be thinking, writing, or advocating for people with autism. But that’s the subject of another post.)
How did I become an advocate for people with autism? It’s a long and winding story that isn’t unique to me.
I started kindergarten in the mid-1950s, almost two decades before federal law required that children with disabilities have the same access to public education as their non-disabled peers.
What did that mean, though, for families and for schoolchildren?
Back then, children with cognitive disabilities were either kept at home, with very little support for their parents in the community, or were institutionalized. It was common for families to hide the existence of disabled children. For example, I didn’t know until I was well into my teens that one of my mother’s closest friends had a child with Down Syndrome, who was institutionalized as a toddler.
Looking back with my adult eyes, on the one hand, I wonder how lonely and shamed parents of children with cognitive disabilities felt. On the other hand, and even more poignantly, I imagine what those toddlers and children experienced, being ripped away from their families and put into care.
But did I go to school with kids on the spectrum? Oh, probably, but they were invisible — unlabeled, or just “quirky”. The Diagnostic and Statistical Manual –I only listed
000-x28 Schizophrenic reaction, childhood type
Here will be classified those schizophrenic reactions occurring before puberty. The clinical picture may differ from schizophrenic reactions occurring in other age periods because of the immaturity and plasticity of the patient at the time of onset of the reaction. Psychotic reactions in children, manifesting primarily autism, will be classified here.
I have a very clear memory of reading the Life Magazine article on Ivor Lovaas’s “treatment” of autistic children, published in 1965. (Warning: this article is painful and troubling, but if you have never read it, I strongly encourage you to do so. It gives you a very clear picture of what it was like to be a child with autism 40 to 50 years ago.) Autism was “a nightmare” and children with autism were “monsters” or “diabolical”. I think I believed those characterizations at the time.
The visionary pediatrician Esther B. Clark lived in our neighborhood. In the early 1950s, she started the Children’s Health Council, (CHC) to serve the unmet educational, social, and health needs of children with developmental delays and other disabilities.
Dr. Clark insisted on keeping the child as a part of the family and treating the family as a unit. She believed in a family’s ability to provide a nurturing and safe environment for a child.
By 1973, CHC had a small school as part of their programming. That year, I had a six-months internship in the school, working about 10 hours a week with specific students. With hindsight, my job was what we would call now an instructional aide or a paraprofessional, but I’d hardly dignify what I did with those titles. I worked a lot on arithmetic concepts with one little girl with many troubling stims and very little expressive language, but I am not sure that the games we played (including number-line hopscotch — were we stimming together? Now I think so) actually added to her academic mastery. But working with her washed the notions of “monstrous” and “diabolical” out of my mind. She was just a little girl with significant developmental delays, doing the best she could to create order and control in her world.
Fast-forward to early 1996, when my daughter was diagnosed with dyslexia. Many of the therapies we were offered were….well, wrongheaded at best, and a total waste of my money and my daughter’s time at worst. Along the way, three things happened: I became a treatment skeptic (show me the research!); I started posting on AOL and other forums about …wrongheaded treatments; and I became very active on the parents’ board of the (now defunct) SchwabLearning.org.
And here’s where autism comes back into my own story. While SchwabLearning was mostly about learning disabilities (reading, writing, math), a number of the active parents on the board had children with autism who were mainstreamed and struggling — not just with academics, but social issues as well. This is when I started learning about social thinking, and how differences in social cognition can affect not only the child’s interpersonal relations, but her academic achievement, specifically in reading comprehension and written expression.
I’m not sure when I first heard the expression “neurodiversity”, but it sure resonated with me, as the wife of a brilliant and quirky man with sensory and social-thinking issues, and the mother of a little girl with prodigious verbal abilities…who nevertheless struggled mightily with reading.
And then came the great blogging explosion of 2003 or so. I started reading blogs by adults with autism and seeing the world as they described it. I met, first online, and then in real life, Shannon des Roches Rosa, Jennifer Byde Myers and other autism parents… but more centrally to this story, I came to know and cherish their children with autism.
So why am I here? This is what I am doing here: I want the society in which I live to accept and value all of its members, not just those who are “normal” or “contributing.” This is what I am doing here: teaching my own children, and the other people I can influence, that “different” isn’t wrong, or bad, or frightening. This is what I am doing here: contributing to the effort — the messages that showing and telling and teaching that “all behavior is communication” and “people do well if they can”.