CW: ableism, ABA, Autism $peak$
I am aware of many things.
I am aware that every noise, smell, sound, light, and sensation hits me harder than it does you. I am aware that the world doesn’t care a jot about this when it chooses how bright to be, or how loud to be.
I am aware that there are people who spend a long, long time searching for the reason their child is the way they are rather than accepting that’s the way it is. I am aware that the struggle of Autism Parents TM is always going to be louder than the voices of their autistic children.
I am aware that most of my social situations are on borrowed time until such a point as I am deemed unacceptable and the limits of accessibility are found. I am aware of the trend that means I never keep a group of friends for long. I am aware that people’s assumptions on what I can and can’t do, regardless of what I tell them, are enough for them to exclude me from whatever they like. I am aware that I am not good enough at social signals, reading situations, noticing emotional nuances, or coping in a rigid world to be acceptable.
I am aware that I don’t look autistic. I am also aware that no one can really tell me what autistic looks like. Except possibly Rainman. Or Sherlock. Or Temple Grandin. I am aware that I am not good enough at maths, too good at eye contact, walk into too many social situations, and don’t flap my hands obviously enough of the time to look autistic. I am aware that you think not looking autistic is a compliment.
I am aware that my pain can look like anger, my silence like rudeness, my bluntness like cruelty or meanness. I am aware there is little I can do about these things, and that I rely on the kindness of my friends to understand me, ask me, talk to me, and see through their neurotypical assumptions.
I am aware that the largest autism awareness charity in the world only gives 1% of its money to actually helping autistic people. I aware that, while they have dropped the word “cure” from their mission statement, that is still what they want. I am aware that the only real way to cure my autism would have been to stop me being born at all. I am also aware that some people are OK with that, and with preventing future generations of autistic people from being born at all. I am aware that these people think that would be an improvement to the world.
I am aware that my employment prospects are really terrible for someone with a postgraduate education. I am aware that I possess a certain level of economic privilege that this merely angers and frustrates me, rather than being a direct risk to my quality of life.
I am aware that the struggles I have day-to-day inspire people enough to tell me they’re inspired, but don’t inspire them enough to change tiny things in their own corner that would make a massive difference.
I am aware that taking people literally is a risky business, but it’s also the best way I have to approach anything to begin with. I am aware that people forget this all the time.
I am aware that there are people who pray for my healing, who want me not to be autistic. I am aware that among both those who do and don’t pray, there are many who think that ABA is a good way to make their children more acceptable to the world.
I am aware that this world tells us all to “use our words” and doesn’t like it when spoken words aren’t available to some of us, whether on a temporary or permanent basis. I am aware that no one really knows what to do with me when I lose my ability to speak.
I am aware that in all of this, I am still one of the lucky ones. I have a level of security in my life that takes a lot of pressure off me. I have a few people who love and understand me, who realise their limitations and the limitations of the world, and who see me as more fully human than I can see myself. Those people manage to be interested in what fascinates me, rather than sending me into a corner. I have the ability to communicate in ways that the world finds acceptable, and I have words to write and put out.
I am aware that when today is over, many of you will be able to stop being aware of these things. I am aware that one can go 364 days in a row without noticing that life is hard for autistic people. I am aware that this is no one’s individual fault, but that individuals are what make the difference.
Am I aware enough yet?
Links (all correct as of 4/4/19)
Michelle Diament, 14/10/16 “Autism Speaks No Longer Seeking Cure”, https://www.disabilityscoop.com/2016/10/14/autism-speaks-no-longer-cure/22884/
Accalia Baronets, 26/8/2017, “Why I boycott Autism Speaks, and you should too”, https://medium.com/@MooniWolfKomoki/why-i-boycott-autism-speaks-and-you-should-too-84112244d797
The National Autistic Society, Employment Campaign, https://www.autism.org.uk/get-involved/tmi/employment.aspx
Amy Sequenzia, “My Thoughts on ABA”, https://awnnetwork.org/my-thoughts-on-aba/