Updated: Sep 12, 2021
I was born in the 1970's in London, England. Back then, Autism was an unknown and forbidden topic, rarely mentioned in the public domain. It was a dark taboo, spoken of in the news once in a while to evoke pity and a sense of tragedy.
Trying to unravel why it took so many years for me to find the key to my personal mysteries, I must put myself in the place of my parents, who are too old at this point to remember the exact whys and wherefores. There must have been such a sense of shame at the time I was growing up, to admit your child had a developmental disability. It was passed off with labels of 'shyness', 'laziness' or adages like 'He'll grow out of it' or 'Everyone catches up in the end'. My parents were very protective of me and always steered me away from thinking about there being a reason for my struggling in school and later in the world of work, or in social situations. People just didn't know any better and the medical community certainly didn't help. Autism was and still is seen by Society as a negative thing and a thing to be avoided. The medical professionals when I was growing up were quick to apportion blame for Autism to all kinds of theories. It was thought that one ‘cause’ was mothers not loving their children, which earned some parents the label 'refrigerator mothers'. It is no wonder that parents were afraid to think about such possibilities, and some lived in denial. There are chilling stories of parents persuaded to part with children who were then institutionalised in horrific circumstances.
Much has changed since then, and then again the echoes of those times still linger. Progress has been made, but at a snail's pace. The real breakthroughs have come with the dawn of self-identity in an older generation of Autistics. The children who were subjected to so called therapies such as ABA(Applied Behaviour Analysis), or PBS(Positive Behaviour Support) had their natural coping mechanisms driven underground by deeply traumatic and punishing therapies. Because our behaviours are different to neurotypicals, therapists sought to suppress them by any means. Like square pegs hammered into round holes, without any heed of the damage that was done to them. Through subjection to Autism stigma and punishing self-stigma, we were forced to mask our real selves in attempts to 'fit in' and try to 'be normal'. This left many Autistic people with post traumatic stress and other scars to their mental health.
Since then, all over the globe Autistic adults have slowly emerged from a state of trauma, feeling the full weight of the mental health problems these dangerous therapies caused. They have battled to have their voices heard. Autistic advocates first took up self-advocacy and then began advocating for the next generation. Now a new Generation has found that communication is no longer the barrier it once was. Distance has become irrelevant through the advent of the internet and the power of social media. Today the online Autistic advocacy community is thriving. Autistic people finally have a voice on the big issues around Autism. Autistic people’s voices matter because parents in the community turn to us for our lived experiences. Whenever there is a question of fighting for Autistic Rights, the advocacy community comes together to make our voices heard. Out of sight of the media there is a civil rights movement underway.
Society once made Autism a symbol of tragedy because they did not understand it, and what you do not understand is to be feared. As more Autistic adults reach out to parents that are mostly new to this topic, the old myths are being exposed and torn down. Autistic-led groups and organisations have sprouted up and social media forums are abuzz with new hope. Hope to go beyond mere Awareness.
Now the hope is for Acceptance. Autistic adults hope for it and so do the parents of the next generation of Autistic children. Parents are realising that they can learn from the lived experiences of older Autistics, who can more often than not recognise the problems the children are having, living in a Society that will not or does not know how to adjust to their needs.
As a late diagnosed adult, I went through my early life hardly ever having heard the word Autism. I was removed from it. And yet I was Autistic, all the while. It was only through my experiences as a parent that my awakening to my own difference became clear. When parenting my little boy and he got his diagnosis, people would comment on how I understood him before anyone else, and what a bond we had. I came to see that this was because I shared more than just the bond of father to son, but that I had trodden the same path before him.
Having recognised myself as Autistic it was only natural to want to seek out others like myself and to eventually join my voice to theirs. Through engaging with the world around us, we can join with all of those who wish to be allies to the cause of protecting the next Autistic generation, by increasing the world's understanding of us.
The message of Autistic Rights campaigners is clear. We are here to advocate and to educate. We are reaching out to the neurotypical world, to share our knowledge. Through our in-depth understanding of ourselves, our Autistic lives and how we interact with the world, we are the key to educating others, to make coexistence possible as never before. In our streets, schools and workplaces, in our shops and museums and on our transport networks. There is so much to do. By forming new groups to provide consultancy with businesses and better training for our public services, we can achieve a better world for all.