IF YOU'RE NOT AUTISTIC PLEASE READ
"Autism is a Spectrum" Doesn't Mean What You Think
This is the link she included in the thread.
[ID A threads of 23 tweets by Sara Gibbs (@ Sara_Rose_G)
If you’re not autistic, please read: here’s how the cycle of autism misinformation works:
Neurotypicals (parents, researchers, autism professionals) decide to do something to “help” us. Usually it’s something distinctly unhelpful 1/
For example, a book or movie about what they imagine our inner experiences are, usually getting it completely wrong & also usually received with feverish butt-licking praise from the non-disabled community, who tend to think it’s “beautiful” or “brave” 2/
Or perhaps a research project, again claiming to “help” but showing no signs of how it plans to do so beyond studying us like zoo animals with a potential view to “curing” us or maybe even making sure we’re not born in the first place 3/
Celebrity ambassadors are wheeled out to the media - almost exclusively parents of autistic kids. Now, this all sounds reasonable enough, right? Isn’t autism a disease? Aren’t autistic people unable to speak for themselves?
Well no and, for the most part, no 4/
1) autism is a neurological difference. In many ways it’s a disability. In many ways it’s our personality.
There’s nothing wrong with who we are. It’s just communicated to you in terms of our deficits. Think of all of your personality traits presented in a pathologised way. 5/
Imagine seeing a list of your character traits skewed in negative terms to make you sound disordered:
“Inexplicable enjoyment of large social gatherings”
“Rigid adherence to confusing unspoken social rules”
“Excessive need for eye contact” etc.
You’d sound disordered too 6/
Now - there are some things about autism that can be disabling - sensory processing disorder springs to mind. But instead of focusing on, say, developing a drug to help us cope or adapting society to give us better access, they treat our whole character like a disease 7/
2) can we speak for ourselves? A lot of autism misinformation focuses on the idea of “mild” to “severe” autism, often focusing on whether or not we can speak, which doesn’t chime with the experiences of actually autistic people. 8/
Link to the article attached in the original post.
Some autistic people are non-speaking. Some have other comorbid disabilities, chronic illnesses & pain conditions. Sometimes these things come together to form a complex picture with high support needs. However - whether or not we can speak is one part of a much bigger picture 9/
Not all non-speaking people are unable to communicate. Some communicate through AAC devices or in writing. And not all speaking autistics experience their autistic traits “mildly”. I am a highly verbal autistic person with moderately high support needs, for example 10/
So what does all this have to do with the unhelpful helpers I started my thread with?
The unhelpful helpers announce their benevolent, charitable autism project. They feel sorry for us. They think we’re diseased & need fixing. They think we can’t speak & need translating 11/
Except we aren’t diseased & we can, for the most part, communicate. Not all in the same way but many of us can.
So we speak up & tell the unhelpful helpers they’re being unhelpful. You’d think as they want to help us so much they’d listen, right? Well, no. 12/
It’s all smiles & sunshine & self-congratulation - until the autism community speaks up. Then it gets ugly. We’ve challenged their view of themselves as good Samaritans. If I were to pathologise NT behaviour I’d say they’re prone to cognitive dissonance 13/
They need a way to discredit us pronto. Either it’s challenging our autistic identities (if we can speak, we must not be autistic enough, therefore what we say isn’t valid) or patronising us (if we can’t speak, we must be confused & what we say isn’t valid) 14/
The media is often complicit in this, either exclusively focusing on parents, researchers & autism professionals instead of asking an autistic person or having us on their shows to sanitise a non-autistic person’s autism project 15/
I have my own stories to tell about the latter & one day I will but now isn’t the right time.
Anyway given that these art & research projects focus on trying to find out what our mysterious inner worlds could possibly be, autistic voices present a problem 16/
Because what’s the point of lucrative neurotypical projects that study our mysterious inner worlds if you could JUST FUCKING ASK US??!!! 17/
The autism machine, the media & the public absolutely love back-patting projects. They love autistic people & want to help us. They love us & want to help us until we talk back. They love us & want up help us all the way to the bank while silencing & demeaning us 18/
If you’re neurotypical & have read this far, THANK YOU. Listening is the first & most important act of allyship.
So what can you do to help the potentially up to one in thirty of us who are your autistic friends, colleagues, family etc. to be heard? 19/
1) when you see a project like this, ask questions. Are autistic people involved? Is the autistic community behind it?
2) if not, who is being allowed to speak on big platforms? Where are the autistic voices of dissent?
3) complain. We can’t make a big enough dent on our own 20/
4) read, watch & listen to books, shows & art BY AUTISTIC PEOPLE. Preferably ones that haven’t been through a massive neurotypical filter.
5) amplify autistic voices, online & elsewhere
6) don’t treat us like we’re diseased & need a cure. We’re not & we don’t. 21/
And finally please don’t believe sickly sweet people with patronising saccharine smiles who claim they’re helping us while shouting over us & ignoring us entirely. Don’t believe our tormentors because they look & sound convincing. Don’t disbelieve us because we’re angry 22/
That’s it for now - thank you for reading all of this & if you’re neurotypical, your autistic pals need you. Please share this or other threads on our exploitation. Please help us the way we’re asking us to be helped. Then you can pat yourself on the back & mean it. End/
End ID]
I’m sitting in that nebulous area where I’m pretty sure I’m neurodivergent, not exactly sure how, and not able to see a psychiatrist consistently enough to really figure it out. ADHD, autism, or both, or something else altogether? I’m not sure.
Anyway, around 15-ish years ago, I remember stumbling across various blogs and small sites (i.e. Geocities or AngelFire sites) for young adults with autism, especially students. They were full of life-hacks, study tips, etc. that really helped me out. Enough that I didn’t need to keep visiting them, and didn’t really bother preserving my bookmarks or anything.
I fast forward about 8 years and I was having a rough time in college, so I went looking for those. But most of those blogs and small sites were gone (often because the entire hosting site was gone). I found tons of new autism websites and blogs! ...almost exclusively geared for the parents and teachers of children with autism. At most, ones for high school/college students were about self-advocacy. Which is useful, don’t get me wrong, just not what I needed and not what I remembered seeing before. All the advice for just day to day coping and strategies someone with autism or neurodivergence can use for themselves were gone.
In retrospect, those older blogs and small sites were probably written and created by people with autism. The blogs and sites that got popular enough to be the first 10-20 pages of search engine results later on were...most definitely not.
It’s like suddenly, the Internet couldn’t fathom the idea that someone neurodivergent could exist outside of what an abled person can do for them.
Adding in here that verbal ability is not always consistent in an individual and often has to do with how stressful or accommodating one’s environment is. I’m highly verbal... until the moment I’m not. When I was a kid and got overwhelmed, especially when I was being scolded for my autistic behaviors, I would become unable to speak and start crying. As I got older, I developed an even worse response - reverting to a sort of echolalia where I could only say automatic-type pleasantries.
I was in a major car accident several years ago, and even though my injuries were minor, I was so shaken up, I could barely string words together. At one point, a paramedic asked how I felt, and I responded with a weirdly chipper, “Good, how are you!”
So, to the point of the original post, autistic people are not only mostly able to communicate, but they are better able to communicate when they are in a low-stress and accommodating environment.
Reblogging because I can’t reply.
I’ve found those sites for parents unhelpful. My boy is 4 and very possibly on some sort of spectrum (global delay until they’re sure he won’t ’grow out of it’. )Aparantly hard to diagnose because he has such a ‘stable’ home life and has only become an issue (with the exception of change management) since he started school.
That was just to context, but essentially all the advice is on how to ‘manage’ or ‘become aligned’. Rightly or wrongly I don’t want my son to just manage at have to align.
So I’m doing what’s feels natural and right for me and him. He’s 4 so there are challenges, but I try to see how he’s seeing things and adjust for him. I’m also teaching him how to be polite and show he cares, not for masking but because I know he does care and I want other people he meets to be able to recognise that. I’m trying to teach him to be understanding of other people and also how to say when he needs understanding.
I hope what I’m doing is treating him like a person with a personality who will grow up to love his differences and understand other peoples
There are far more positives about his ‘ divergence’ (and I hate that term) than negatives, he is truly an amazing person with a love for life and I hope that life in this world never takes that away
So fun fact I'm a parent with autism, and there are...no resources for us. My child is neurotypical as far as we can tell and parenting them well is....phew.
