When Emma was diagnosed as Autistic, we read that autism was an “epidemic”. I remember the figures – 1 in 166. In 1980 the rate was 1 in 10,000 according to others it was more like 1 in 2,500. Andrew Wakefield had published his “study” of 12 subjects in The Lancet, regarding his belief that vaccines were linked to autism, six years before. The Lancet’s retraction of the Wakefield study did not occur until 2010, and the fallout was, at the time of Emma’s diagnosis, being widely felt. What I didn’t know, until much later, was that Wakefield had applied for a patent just nine months prior to the publication of his, now discredited, study for a new MMR vaccine that he said was safer. Wakefield, it seems, stood to make an enormous amount of money. Yet I and many parents like me wondered if there was truth to Wakefield’s “findings”. Despite subsequent studies showing that his findings were false, people wondered. After all, autism was an “epidemic” so what was causing the epidemic? It seemed vaccines provided an answer.
Except, what if there was no epidemic? What if the word epidemic was being used by organizations intent on raising money? These were the questions I began to ask. If autism WASN’T an epidemic, then where were all those Autistic children when I was a kid? And where were they now? Why didn’t I know dozens and dozens of Autistic people? They should be everywhere I concluded and since I didn’t know of any personally, I decided to look for them. So began my search for Autistic people. (I know my wording sounds archaic, but I actually meant for it to, because it illustrates my thinking not so long ago.) I periodically googled phrases like – “where are all the autistic adults?” or “Autistic adults” or “Autistic adults in the work place” or anything else I could think of that might lead me to them. I found very few. I came upon Temple Grandin and Donna Williams, whose books I immediately read, there were a handful of others, but the shelves of the “Special Needs” section of the bookstores I frequented were filled with increasing numbers of memoirs written by parents, not Autistic people. When more and more people began blogging, I started googling “Autistic blogs” and came up with not a one. For years I would periodically look and when my searches came up empty, I concluded – It must be an epidemic. It seemed a logical conclusion. And eventually having concluded that autism was in fact an “epidemic” I stopped looking for Autistic adults.
Then two things happened within a six-week period. A follower of this blog sent me a link to Julia Bascom’s blog – Just Stimming and another parent encouraged me to read the anthropologist and father of an Autistic child, Roy Richard Grinker’s Unstrange Minds: Remapping the World of Autism who suggests autism is not an epidemic and the current rates are a more accurate reading of what has always existed. It was a one-two punch; I began to question everything I thought I knew. From Julia’s blog I began reading and reaching out to Autistic bloggers. Through my, at first tentative, communications I began to find many, many more. It was literally like discovering an alternate reality, and as mind-blowing as anything I’ve ever experienced. The more I looked, the more I found. Within eight months I went from not personally knowing any Autistic adults to knowing hundreds of people who are my age and older.
One friend of mine and I were discussing all of this the other day. He pointed out that many people, like him were beaten, often brutally by their parents to make them stop their undesirable behaviors that might make them “stick out” or in any way noticeable. He said, “People like me would hide our Autistic traits as best we could. We were still considered the weird kids and the outcasts, but we were not called Autistic.” He reminded me that he and others like him were trying their best to remain as “inconspicuous as possible because the only signs we had were the “Kick Me” signs that would be put on us by bullies.” He then went on to say, “We had to do our best to be invisible and/or find a way to blend in or hide to stop the beatings by family and class-mates.”
As I think about all of this, I have more questions. What about the autistic girls who were like my daughter? Would my daughter, had she been born in the 50’s, have learned to “pass”? And if so, what does that say about our school system, because Emma is in no way near grade level? Would she have been deemed learning disabled, but taught how to “behave appropriately”? Would she have, through punishment, been able to conform? What about her language? Would she have just been thought a “quiet” child? The little girl who, if she’d been punished enough, learned to sit silently in the corner? At what cost would this have occurred? Or would we have been told to institutionalize her for the “good of the family”? Would we have been advised to save our son and ourselves from being “dragged down”? Has our thinking changed so much?
I ask these questions honestly. It took me a very long time to find all those Autistic adults I’d been looking for since my daughter was diagnosed in 2004. When I was still looking, I never, not for a second, thought in finding, I would also find hope. It never occurred to me that I would form relationships that are, not only important to me, but relationships I cannot imagine being without. Friendships that are vitally important to me, people I love and look forward to seeing and spending time with. People who would patiently explain to me what it was like growing up in an era that did not “recognize” autism. People who try to help me understand what it is like living in a society that does not want to see or hear them. People who do not enjoy the basic rights I enjoy and do not even think about. People who are condemned, abused and misunderstood. And yet, that is exactly what happened.
- At What Point Do Our Actions Constitute Torture? (emmashopebook.com)
- Want to Know About Autism? Ask An Autistic (emmashopebook.com)
- Autism = A Human Rights Issue (emmashopebook.com)
- Andrew Wakefield tops the “Retraction Epidemic” (leftbrainrightbrain.co.uk)
- Not Quite Everything Parents Need to Know About Autism Spectrum Disorders (lizditz.typepad.com)