As many people know, April is Autism Awareness Month. There many days and months strewn about the calendar year with “awareness” tacked onto them. It’s supposed to raise awareness for these often life-crippling conditions.
There’s a bit of an inherent problem with this philosophy, though.
Most people are aware of these things. People are aware Autism exists. People are aware breast cancer exists. People know these things exist. They don’t need to be “aware” of them.
Some people will say that this is still a good thing. The more people that are aware of these things, the better! We should do all that we can to bring about more awareness. People being aware helps those with the conditions. And the more people are aware, the better we can make society or look for cures for some of these things.
The main problem with this is that most people stop at that.
“Oh my friend has Autism. I donated to Autism Speaks to help look for a cure!”
Those are the sorts of statements most people do. They’ll donate to “help.” They know somebody that has it. They feel good about themselves for doing that much and leave it at that.
That’s the problem with “awareness.” Most people don’t stop to think about the deeper problems those people face or even the charities they donate to. They just do something that seems like it’ll help somehow, then just move onto the next thing.
In my mind, “acceptance” moves beyond just “awareness.” Acceptance is actually trying to understand Autistic people and the challenges they face. It’s about trying to understand symptoms and the ways Autistic people think. It’s actually listening to the voices of Autistic people for those with the capacity to understand. It’s moving beyond stereotypes shown in media and creating more nuanced portrayals. It’s about creating environments that are friendly to Autistic people.
Before I get into this, I do just want to say I know not everybody has the time or ability to look deeply into everything they do. It’s just unrealistic to expect that. The point of this article is mostly just to get you to think a bit more. People legitimately want to help. Donating to charities is a good way to do it. Sometimes it’s all people can do. Some people can only donate $20 dollars or something to help. And that’s fine. But there are bad charities out there. Some are exploitative and don’t actually care about their cause.
I also just want to talk about some of the issues Autistic individuals face. The point of “awareness” months shouldn’t be to just make people “aware” the thing exists. Most people already know. I’m just advocating for people that do want to educate themselves more on places they can start.
And in order to help, one of the biggest things to be aware of in the Autistic community is Autism Speaks. It’s the largest and most well-known Autistic charity. It seems like it should be a good, reputable organisation to donate to, right?
Autism Speaks is one of the absolute worst organisations that can be donated to. I’ve seen this comparison thrown around a fair few times in the Autistic community and I have to agree. They’re basically like PETA. Autism Speaks hates Autistic people in the same way PETA hates animals.
I could do a deep-dive into all of this, but I’ll keep it pretty short. I think there’s one thing that speaks loudly enough about AS’ stance toward Autistic people that it can suffice on its own.
There’s a “school” (I can barely call it one) called the Judge Rotenberg Center that AS supports and sent much higher-support needs to. They used literal shock backpacks as a form of aversive behavior. iilluminaughtii covers this in pretty great depth here. Needless to say, trigger warning for violence toward those that can’t advocate for themselves and especially toward children.
Something like this is absolutely barbaric and I have to agree. It doesn’t seem like it’d be happening this far into the 21st century, right?
I wish I could say that was the truth, but it’s not. The FDA only banned the use of shock devices on special-needs individuals in March 2020. It’s only been a little over a year since that ban.
Something else tied heavily into AS and the Autistic community is the use of puzzle piece imagery and the color blue. It was the organisation that pushed both of these things.
“Light it up blue” and “wear blue” are common motifs for AS they created. Most Autistics go “red instead” to remove themselves from association with AS. Unfortunately, it’s lesser known among the general public, but we’re trying to raise awareness for it.
The puzzle piece is really the most iconic imagery associated with Autism. You see it really everywhere: awareness ribbons, shirts, logos, and even nail art. But it really shouldn’t be used due to it having several problems.
One of the main reasons is because it associates Autism as a childhood disease. It infantilises every Autistic person. People aren’t really aware of Autistic adults. By keeping it associated with young children, it drowns out the voices of people like me. It ignores those adults who might need support finding a job or something else. It denies services to adults and keeps things focused only on intervention. Most normal people and even Autistic adults aren’t aware there are thriving communities of Autistic adults. There are a lot of issues adult Autistics face but I’ll come back to that a bit later.
Another reason Autism Speaks is considered controversial in the Autistic community is the use of ABA (Applied Behavioral Analysis therapy. I was personally never exposed to ABA as I was only diagnosed as an adult (18-20 years old). I only learned about its existence after entering the Autistic community, so I can’t speak to it with any authority. But it’s generally considered unacceptable and does more harm than good. At its base, it’s an aversive therapy. Basically, when unacceptable behaviors are shown, it’s punished somehow.
The controversy is that all it does is teach Autistic children how to do something called “masking.” Masking is the practice of making oneself appear neurotypical to be more accepted by society. Yes, that is as exhausting as it sounds. It can lead to something called “autistic burnout.” Basically, that’s when someone reaches a point when they just can’t cope with life anymore. It leads to mental and emotional exhaustion and it can often be accompanied by the loss of certain life skills. Spectrum News has a good article on it.
Needless to say, being punished for natural behaviors has been proven to lead to extremely high PTSD rates for those exposed to ABA and ABA-adjacent therapies. It doesn’t help ABA has heavy ties to the creator of gay conversion therapy. Suicide is already the #2 leading cause of death among LGBT people ages 10-24. People exposed to conversion therapy are twice as likely to attempt suicide.
There are a ton more issues Autistic individuals face that I’ll rattle off in a bullet point list.
- Autistic individuals are likely to not be safe in interactions with police.
- Autistic individuals 20-29 are 58% more likely to be unemployed than their neurotypical peers.
- Autistic people are far more likely to be LGBT.
- Autistic people are 3 times more likely to attempt suicide than normal.
These statistics and more are why Autism Awareness Month should be Autism Acceptance Month instead. We need to move beyond awareness. We need to move to create a society that is more friendly to Autistic people.
How do we do that?
Well, there are small ways you can help.
You can donate to charities like ASAN, the Autism Self-Advocacy Network. Charities like this and others are run by Autistic people. They actually understand what being Autistic is like. They know where to put the money they get.
Try using identity-first language instead of person-first language. All that means is instead of saying “people with Autism” is use “Autistic people” like I’ve been doing through this article. Many of us see Autism as an irrevocable part of our identity. Yes, it is a disability, but just like LGBT people, many of us are proud to be Autistic. That doesn’t mean we don’t see the negatives that come with it. But many of us do embrace the positives it can bring.
For example, I’m proud to be Autistic. Yes it does severely hamper me socially. It hampers my ability to hold a job. There are a lot of other negatives. But there are a lot of positives. My ability to analyse and understand different topics is because I’m Autistic. I want to know everything, so I dig and dig and dig into whatever topic I want to know. I’ve spent over $700 on books on the Ainu just so I can be sure I get every bit of information I can. I dig into characters so much I can literally write a 10,000 word analysis on just one of them. It makes me learn the lore of whatever fandom I love inside and out. I can create systems from scratch.
There can be positives to being Autistic. The negatives do often outweigh the positives; I won’t even deny it. But that doesn’t mean I can’t embrace what positives it does bring.
Granted, if language should be person- or identity-first is a bit of a debate in the Autistic community. Some people have strong opinions. Others don’t care. Still others don’t even know there’s a debate. Another way to approach it is just to say that somebody is “on the spectrum.” I haven’t seen this come up too much in the debate personally, but it might be a good middle-of-the-road agreement.
Stop the use of functioning labels. I’ll go into this more in later articles this month, so I’ll keep the explanation brief. They are generally seen as incredibly harmful. The main reasoning is that it denies services to “high-functioning” individuals and denies independence to “low-functioning” individuals.
Most of all… Listen to #actuallyautistic voices. This can mean supporting Autistic creators be it through commission Autistic artists, watching Autistic creators on YouTube, buying from Autistic-owned small business, and more. Mostly, though, this means listening to the voices of Autistic adults. We’re the ones trying to fight for better services. We’re the one trying to win accommodations.
We know what it’s like. We know what we’re talking about.
But most people ignore us. Thankfully, that is slowly changing, but it’s gonna be a long, hard battle.
So, please, support us in any way you can.
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