Autism Awareness Month – Toxic Positivity.
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My name is Matty Angel, I am Autistic and also have other disabilities including a complicated Functional Neurological Disorder and PTSD. I am a disability advocate and many people very dear to me have a range of disabilities, some of these people are Autistic and quite a few are non verbal.
This Month, (April 2023), is Autism Awareness Month. During this month many people seem to feel that need to share various views on Autism. I always found it strange how you are suppose to specifically do at this time of the year… But here we are.
One view that gets very little attention is that there are many people with autism who have not been blessed with the power of communication like I have. Those online tend to overwhelm the perspective and information we receive with their own view, one that does not match a large portion of those who struggle with Autism.
I think this group gets ignored often because it shows a view that “Autism is a disability” and they very much like to go with the narrative that autism is a kind of identity. That any disabling effect of Autism is caused by society.
This is a view is shouted repeatedly by many individuals who quite often have been diagnosed very late in life and often at times are also self diagnosed.
The truth is when it comes down to it society is not what makes me hit my head or throw it on walls. Society doesn’t cause self injurious behaviour and most of all society does not make your clothes uncomfortable.
This is why I shun the terms neurodiversity and neurodivergence. Many communities around these two non medical terms have created an echo chamber that to many individuals does nothing but spread toxic positivity where you are looked down upon for seeking advice.
I moderate a community where many individuals often cry about these communities. It is particularly hard on teenagers.
They cry because their support groups are filled with self diagnosed with autism and only present Autism in these groups as a positive wonderful thing.
They cry because when they ask for assistance and support around socializing they get a lecture on how its societies problem and they don’t need to change. Despite them feeling lonely wanting to make relationships work.
Most of all though, they cry because of Autism being treated as an identity. When seeking therapies and support to better themselves and find a way to be in the world, they are told they are “Supporting Eugenics” and “Anti Autism” and yes. I have read and seen many of these messages.
Because of this I want to warn you, that “Autism Awareness Month” (Sometimes Autism Acceptance Month) is a month where there is a lot of views that may not be shared by all those individuals with Autism.
And to those with loved ones not blessed with communication,
Please show them love. Not just through this month but throughout their lives. It provides far better benefits than any acceptance or awareness post ever could.
-Matty Angel
About The Author
Matty is a 36 year old girl who is an Autistic Poet, Writer and Artist and lives alone in Christchurch New Zealand with a kitty! Matty has given many talks on autism and about being unique in a world that's often not accepting, Matty has also engaged with artist and worked on Art projects Matty usually works on an Art project at the same time as a writing one! This means posts can be a bit delayed!
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Love this piece of writing. Particularly the last three sentences as love is the most important thing to convey. I have seen people struggling with autism and I know that if they had a choice they would definitely wish they did not have it. It is heartbreaking to watch them struggle. I am so tired of hearing people talk about someone and say that they think they are autistic. From their descriptions it is obvious to me that the problem is not autism. There are some very weird ideas of what autism is and I detest listening to them. Thank you for writing this.
Thank you. This is important.
I am late diagnosed, one of those who “just thought I was quirky and anxious and highly sensitive to light and sounds,” and “wondered why I never fit in and have always been rejected,” and yes I am working on acceptance and on not being ashamed.
The “autism is a beautiful rainbow of magical identity difference” message is targeted at people just like me. Creative, non-heterosexual, quirky, articulate, sensitive adults who started with obsessive self-diagnosis and went on a “journey.”
And yet. This may be a different operating system, but it’s not “just” difference. It’s a disability. I seen kids with profound autism and it’s devastating how much they miss out on. And I missed out on a lot, too. A lot.
From what I have observed and my theory, the “autism is cool and should just do what autism wants to do” movement is coming from college students going through their “being weird and different is how I know I have an identity” phase. Young people are idealistic. They want to change the world for the better. Maybe they really believe that they will “change society,” and force everyone to tolerate their squeaking and spinning etc etc.
I remember being in my teens and 20s, and I was a total weirdo. There was a brief period where I found the “goth kids” and “gay kids,” and they let me hang out with them. They thought I was funny. They nicknamed me “Flap.” Because, well, the flapping.
Things are different as time goes by. My own squeaking and spinning embarasses me badly. I’m in my 40s and still can’t drive a car and can barely tolerate a 5 hour shift working at a small local discount store.
When other women my age start to chat with me in a friendly way, I allow myself to feel like a normal neighbor, and sometimes wonder if I am possibly making a new friend. But too often at some point when I’m chatting with a nice person, I will see something in her eyes just… change. She’s noticed that there’s something different about me. She quickly wraps it up and backs away.
The Internet is no sanctuary. Online support for people with autism is not a safe place to look for friends.
Looking for support online often means that I am purity tested for ideological beliefs which near as I can figure amount to: “no one on the spectrum should ever receive actual help ever, because offering to help is invalidating or something.”
I don’t understand these ideologies.
I don’t know what “ABA” is or why it’s so bad.
I don’t know why I can’t say “people with autism.”
Or maybe it’s “autistic people” I’m not supposed to say?
One of them is offensive and I can’t figure out which one, or WHY.
I don’t understand why I’m supposed to hate the puzzle piece symbol. I LOVE solving puzzles.
And besides, fitting into the world IS a puzzle. It’s difficult to comprehend at first. And I like thinking of myseIf as being a piece of the world. Not outside of the world, but belonging to it, important to the whole, and I just need to find the place where I fit. What’s wrong with a puzzle?!
It’s just so cruel. Online support groups for people who have difficulty understanding arcane social rules and changing norms are subjected to a constantly changing minefield of easily violated social norms? People who have limited intuition for others’ inner experiences are expected to somehow KNOW why others are offended by various strings of words? People who need to understand the logic behind instructions and norms are told that asking for this reasoning is “violent” and “not up for debate?”
If I do ask for the reasoning behind all these social demands, it is because I don’t understand. It is because I want to learn and adjust my behavior to fit in. I’m not trying to “debate” (unless a debate turns out to be warranted by poor reasoning, but how can I know that without knowing the reasoning in the first place), and I’m definitely not trying to be cruel or rude or “violent.” And I would never ever want to be! Ever! Shouldn’t people with autism, of all people, understand that?
And all of this confusion is accompanied by the high stakes threat of rejection and expulsion for making a mistake. It hurts, makes me paranoid and very very confused. And I’m so lonely.
Thank you so much for speaking in a balanced way.
(ps Found your blog on an art trading forum. Art trading is how I’m able to connect with people. It’s an awesome hobby I recommend to everyone!)