We often talk about disabilities that can’t be immediately seen. And in our community, there’s an ongoing discussion about if Autism is even a disability.
Perhaps we need to redefine how we think of a disability… not as something that means the person is less than or lacking something but more that as a society we ourselves make it the square peg in a room of round holes.
Today on the Voices of SPD series, Richard of Proud Autistic Living, talks about his own personal experience growing up undiagnosed with Autism and challenges us all to continue fighting for and supporting those with Autism.
Autism is Not an Invisible Disability. You Just Have to Look
There is no such thing as a perfect childhood. There just isn’t. It just isn’t that way for anyone. It really isn’t. It’s easy to look in and see that a certain family looks like everything is easy, everything is perfect. Great careers for mum and dad. The kids are great at sport, popular and smart too. It all looks perfectly wonderful. But underneath the surface there is always issues. There is always something that goes down that is less than perfect for the family.
Yes. Dad has a wonderful job and it pays well. The kids have all the toys and games they want. The latest iPhone, iPad and laptop is regularly provided. It all looks so easy. It all looks so perfect. No one sees the tears shed as the kids mourn the lack of time they get to spend with their parents. No one sees the pain of the Mum, as she waves goodbye to Dad as he heads of for another week long trip for meetings.
No one sees this pain.
There is no such thing as the perfect family. There is no such thing either, that the difficulties disabled children endure can be eradicated. No there really isn’t. There will always be the sideways glance at the boy in the wheelchair. There will always been the talk of the other parents who don’t want the disabled child in their child’s classroom. There will always be that teacher that doesn’t want to deal with the special needs kid in their classroom. There will always be that because we will always be part of a human race full of flawed people.
It might be a little harder to see that I am disabled than it is to see that a person in a wheelchair is for example, it might be easier of course but it sure is not impossible.
I’m a disabled person. I always have been a disabled person. I didn’t always know this because my disability is an invisible one. Well actually no, it’s not invisible. It’s wrong to say that actually. It might be a little harder to see that I am disabled than it is to see that a person in a wheelchair is for example, it might be easier of course but it sure is not impossible.
As a young boy in school I didn’t recognize it in myself. I really did not have a good time at school. Actually it was pretty much a hellish journey. I’m Autistic and one of the things I am really good at is remembering shit. Like phone numbers, events, useful things and really useless stuff too. For example I remember photographically events like what happened in the final over of the West Indies Versus Australia World Series Cricket match from 1985, my phone number for the home I lived in from 1979-1985.
Because I remember these things so well, it strikes me as significant that so much of my school life was a life lived in a fog. Snatches of time are there, yet whole long timeframes are nothing but a blur. I spent my first year of school was spent in a very small school. There were only two classrooms, in one room were the Kindergarten to grade two children and in the other room were the grade three to six kids. I have virtually no memory of that year at school, except for wandering the school yard in silence on my own. Sitting on the carpet in a fog of unknowing, as the faceless teacher’s words washed over me. Grade 2 was at another school. I remember the teacher. Mrs Burman, I remember Perkins Paste, I remember maths problems on the board.
I remember being bashed up in the boys toilets. Bashed up in the four square court. I remember being teased relentlessly for making the mistake of admitting that I liked to watch the pre-schooler TV shows in the holidays. But mostly I just remember walking in a haze, wanting to have friends but never managing to make it happen. I remember spending lunchtimes and recesses living in fear of when was going to be the next time I would get kicked, punched, teased. It was not something any child should have to deal with. I remember how in trying to join in I would try to play the same sneaky games in the classroom but always seemed to be the last one to realize the teacher was watching. And of course there I was left holding the bag as it were and the one that ended up in trouble.
Just a little microcosm of my school experience, it gives a bit of a clue to what school was like in the early years and continued to the same as school years rolled into each other. The other side of the equation was home life.
I remember very much from home life. I remember the wooden spoons broken over my arse, I remember the ridiculing by my sisters, the yelling and screaming for always doing the wrong thing. I remember always feeling how I couldn’t be understood. That somehow this was all not right. That somehow this was wrong. That somehow I could not make sense of this ever.
I didn’t recognize my disability. I knew I didn’t fit somehow, I knew I was kind of like in someway that stereotypical square peg that could not fit in the round hole. My family clearly didn’t recognize my disability either, they didn’t see me as someone who didn’t fit in but as a naughty, difficult, stupid child. Often I was told I was dumb. Often I was the scape goat when something was amiss in the family. Always wrong, always the black sheep.
What the point of this spewing of self-pity you may ask?
Just one thing really. That many of us Autistic people have been through some similar experiences. Many of us have not learned of our disability until it was too late to avoid what has been endured in our lives. Many of us were bullied relentlessly. Many of us tried so hard to fit in but failed abysmally.
The disability we have is not an ailment, it’s not an impairment. It’s a social disability. It’s a disability imposed upon us. It is imposed upon us for no other reason than we are different.
The disability we have is not an ailment, it’s not an impairment. It’s a social disability. It’s a disability imposed upon us. It is imposed upon us for no other reason than we are different. We are faced with a life of being told you must fit in you must conform and you must do everything you can to not draw attention to your differences.
You may think that this is a throwback to the dark old days when we didn’t know much about Autism. But unfortunately you would be wrong in that thought.
Autistic children are faced with the same dilemma today. They are faced with walking through life with similar issues. And this is predominantly because of difference being seen as wrong and less.
There are times where I just want to throw my hands up and say it is just all too hard. But I remind myself that this is not the okay. I can’t knowingly do nothing to stop these kinds of experiences happening all over again to a new generation of Âûtistic children.
What can be done?
Quite a lot!
- Tell your positive stories about Autistic people
- Tell the media that we are different not less
- Speak out about the narrative of deficit and disease promoted by Autism Speaks and the organizations like it
- Write to the newspapers and inform them of the abuse that occurs with horrible treatments
Just a few ideas that spring to mind.
I long for a world where Autistics are accepted. I long for a world where announcing that you are Autistic is not an opening for you to be dismissed and discriminated against.
I appeal to everyone to help Autistic advocates to change the narrative of disease to difference, from less to equal.
This post originally appeared on Proud Âûtistic Living. You can read more from Richard at Never Less Than Anything, where he writes about being Autistic, living a non-autistic world, advocating for autistic safety and acceptance.
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Although informative to a degree there are a couple of things here that don’t resonant well.
Refering to a person as Ausistic and for better words a person with Autism are two very different meanings.
Annalise O says
Actually NICOLE, “Autistic person” is empowering FOR us.
“Person with autism” is distancing and the kinda shit parents, doctors, and those who are NOT autistic say. Person with autism is like saying ‘person with maleness’ to denote a man… or ‘person with gayness’ to denote a homosexual. Autism is WHO WE ARE. It’s not an aspect of us, like ‘person with SOMETHING’. Autistic person is identity first. Identity matters. We matter.