In my mid 30’s I spent a few years working with autistic children in my local school system. Being at the bottom of the seniority list meant I was often assigned to extremely challenging children, mostly boys. Individuals who were non verbal, epileptic, occasionally violent and frequently if not universally, non conforming. I knew next to nothing beyond what I was presented with, having no university training. I did however have experience with changing diapers, cleaning up barf and being patient with distraught or seemingly inconsolable children.
I recall one day observing a boy, not in my charge, endlessly pacing the room. He’d snag any food left unattended, was “diagnosed” extremely low functioning autistic and seldom engaged unless compelled to. Someone dropped something near his path and I casually said “pick that up___” and he did. In that moment, I knew I wanted to work with him.
Our seniority system had us bid for our jobs according to seniority so I spoke to the fellow currently responsible for that student, warning him I wanted his job. He was ok with it.
I spent the next year studying everything I could find on autism; from the internet, the library, magazines, whatever I could find. Some of it now I realize was misguided, but I lapped it up with enthusiasm.
My fellow was extremely challenged, he never did speak, although he made sounds. I hoped and worked towards the smallest of accomplishments. Little by little he moved toward adapting to the system.
We worked through a number of strategies and procedures suggested by the teacher and consultants. It was an uphill battle, constantly addressing the expectations of an education plan that was mostly designed to facilitate the needs of the school, attempting to mould or adjust behaviour towards conformity and compliance. It was a lesson for me in how a rigid structure is uncompromising in its need for the individuals to accept and adjust to the socially determined standards. There was little allowance or acknowledgement that this boy’s individuality was something that might possibly have value or relevance. Certainly, now my perspective is more informed and defined.
Which brings me to the point of all this.
My limited experience with autism, Aspergers and disability, however it gets defined, has been validated, inspired and enlightened by a phenomenal and amazing book I read recently. A history and description of the diagnosis and odd directions the experts and parents have pursued in order to fully understand what autism is.
For so long many believed it could be cured, that it was caused by a number of external interventions whether the “iceberg mother” or vaccinations. How Aspergers became one end of the spectrum and individuals through the years capitalized on their neurodiversity in order to survive and thrive in some cases, in spite of so much discouragement, abuse and alienation.
Today many of these individuals are thriving, making their way through the neurotypical universe. People that find it almost impossible to lie, who tell it like it is and prefer the company of like minded are speaking up, stepping out of the background, writing about their experience and living quite independently. Certainly there are some who will never live away from 24 hour support, but the stigma and prejudices are being eroded. How much better would this world be if we could capitalize on the gifts everyone inherently has instead of constantly comparing and competing, disabling and negating anyone who doesn’t fit within the normal range?
Isn’t time to throw out that term? What is it and who wants to be normal? We are all exceptional individuals, neurodiverse beings working towards perfection, each in our own way. Celebrate it!
Wonderfully written CM. It has taken me years to shed and understand my conformities to the point where I now accept the term "eccentric" with glee! That's my "normal".
ReplyDeleteIn celebration - Deb Maike