Sarah Widdup says it’s time to actually listen to the autistic members of our community, not just the autism experts on awareness campaigns.
I’ve not been at this autism advocacy/activism thing long. Maybe two weeks, give or take a day. I’m not really at it now…I’m trying to learn the ropes so I can help without putting my foot squarely in my pie-hole. I’ve been guilty in the past, even after my recent diagnosis, of not understanding or listening as much as I should. Even the first piece I wrote for this site had the vague whiff of the parental martyr about it, at which I cringe upon re-reading.
Pre-diagnosis, I assimilated well into society, it has to be said – on the outside at least – learning how to mimic acceptable neuro-typical behaviour and opinion until it became hard to distinguish the learnt from the felt. I’m still in the process of weeding out and unlearning the things that keep me from being an asset to the autistic community, and from being myself.
In the past I took a “person with autism” approach, not really understanding what that meant and how it wouldn’t work in the scheme of things. “Person with autism” suggests that I have something, an affliction, some kind of defect or disease.
Me and It.
I am a person, that much is true, but I’m also a variation, an autistic person. Autism is not an unfortunate add-on to a separate entity. It is me.
I’m not ill. I have a difference in the wiring of my brain, and if you could hand me a pill and say, “Look, we found a cure!”, I would certainly not be lining up with a glass of water and out-stretched hand. It’s my neurology, and that means it touches everything I think, or do, or feel.
I’m autistic first, at least to my mind (and my mind is autistic, so I guess it would tell me that, knowing itself the best and all). It saddens me more than I can express that I not only inwardly subscribed to the affliction model, but that I outwardly expressed it, and to people who were trying to tell me something. I wasn’t listening, to them or myself.
There is a growing community of autistic people trying to get the world to listen, with their own ideas around support services, respectful language, and the lack of real discourse on these and many other issues – discourse that actually listens to and involves autistic people. They’re motivated, ready and willing to help, but largely ignored. Hell, they have a right to be involved – they’re the ones living it, breathing it, wading against the tide of giant PR budgets that sell the tragedy/cure line.
Everyone else gets asked for their input, it seems. Carers, parents of autistic children, medical professionals. Why not autistic people themselves? We have something to add to the conversation, and every right to add it.
If you spend five minutes on the Internet, they’re easily found. The autistic people speaking out – blogging, writing, using sign language, using new and exciting communication technology. They’re trying to communicate to the world what it means to them to be autistic, and the things that can be done to help and not harm them, but their competence is almost always questioned. There are others too, parents and caregivers who refuse to marginalise their loved ones or force them to conform.
Yes, I know there’s a pant-load of “autism awareness” organisations out there already. They’re busy lighting it up blue and whatnot, making everyone more “aware” with their enormous charitable funds, donated mostly by good people who want to help. Some of them though, the “aware” ones, they’re trying to scare you. There’s a lot of talk of the “autism epidemic” and the search for a cure. My personal favourite is the kidnapping scare. Did you know autism is kidnapping our children? My son is autistic. I just checked his room and he’s still there, and still awesome.
I want to help create a safe and accepting forum for my son, and for all those autistic children who will grow up to be adults one day, to be able to speak to what they need, be it verbally or in other ways. They, like all children, are part of the future of this world, and they deserve to have a hand in their own destinies, whatever life may bring and whatever help they need.
For more information on autistic self-advocacy visit the Facebook page of Autistic Rights Australia.
To celebrate being a year old we want you, the readers, to help us decide the articles you loved best during our first year – and to encourage you to participate, we are giving away three prizes!
All you have to do is look through our archives of content and email us your favourite article – and also if you want, the one you weren’t so up with. From the submissions, we will assess the most-loved content from our first year and republish it at the end of our birthday month.
Both writers and readers are encouraged to enter (no, Paris, you cannot nominate your own articles…#justsaying), so please email us at email@example.com by Nov 30 to enter! Please include your name, address and mobile number.
And the prizes are…(did we mention there are prizes…?)
First prize: A brilliant acting course based in Sydney and hosted by Darlo Drama worth $550!
Second prize: A gift pack from our friends at Booktopia
Third prize: Four movie passes
(Plus watch out for a couple of other competitions during our birthday month!)