In the Crowd
Posted on March 16, 2016
I see them everywhere that I go.
I see them in the street, sitting on the table adjacent to me in a cafe, being loud at the library, at the zoo, walking a dog. I see them peopling my past with anecdotes that had little or no context at the time. Though they never did blend into the crowd, these adults who are like my child, now I see them like never before.
When I was a child, autism wasn’t a common diagnosis. I don’t recall ever knowing anything about it before the movie Rain Man, but doubtless, we all knew autistic children and adults on the “higher” functioning end of the spectrum, and so did our parents and grandparents. Some of those people managed to fight or fake their way through, viewed as a bit odd, some were cast as being slow, and others as difficult children, or troublemakers.
A couple of generations ago, parents were often told to institutionalise their young children, their toddlers, and to forget that they ever had them. They were the kids who couldn’t pass or hide their differences; the kids like Boodi. I read accounts of the abuse of institutionalised children, and it makes me wonder about those who were literally voiceless, and the heart breaking notion of the stories that will never be told.
Donald Triplett in the U.S. was one of the first group of children ever diagnosed with “Infantile Autism” in the 40s. You can read his story here. He was one of the lucky ones, after initially following medical advice and institutionalising their 3 year old son, his parents were unable or unwilling to forget him, and his mother wrote and researched far and wide to find a professional who could help. The doctor that they eventually found was Leo Kanner, the man who ‘discovered’ autism.
Throughout his life, more than simply being recognised for who and what he was, Donald was also raised by the village in which he lived, his local community helped to nurture him and continue to do so into his old age. He has lived a full life.
Countless other children suffered a different fate. A peek into the early chapters of Steve Silberman’s Neurotribes makes for grim reading. I had to take breaks of weeks at a time after reading the parts which detailed the historical abuse of disabled children, and those were the ones condoned by the medical professions of the time. Hitler and the Nazi’s first sterilised and later murdered the vulnerable children in their institutions.
Today we live in a time of unprecented recognition of autistic people, though the broad majority of people probably still reference Rain Man or the autistic child of their next door neighbours Aunty’s daughter, yet still we know very little about the genetic, biological or neurological implications of it. Children like Boodi may no longer be institutionalised, but they are not always afforded equality in schools or the community, teachers are not required to train in how to accomodate the growing special needs population. Society and legislation is not keeping up with the growing percentage of ASD diagnoses.
Autistic people don’t need more awareness of autism in the community (although knowledge is always good), they need acceptance and support. That means all autistic kids being able to attend mainstream schools full time in the future, with the same support that they can get in a special school, it means fully trained teachers and education, and respect for neurdivergence, with less focus on large organisations for a cure or prevention. Autistic people have as much to offer as everyone else, whatever ‘functionality’ they are assigned, and they deserve first and foremost is to exist.
It has always been important to us to treat Boodi’s autism with respect, to impart to him the knowledge that every bit of him is valuable, including his autism. This is why I veer away from person first language (which would say that Boodi has autism, instead of Boodi is autistic), to act any other way is to infer that his autism is something to be ashamed of.
These days, I see adults with more severe autism, and they are the ones that I recognise on the streets, and I wonder what Boodi will be like as an adult. It is impossible to guess. We cannot know what his future holds, except that he will be loved, and that we will never accept anyone else’s estimation of him as less than a shining star of brightness and potential. We just hope that the world can catch up one day soon.
Here’s a song that I kept humming while I was writing this piece.