Autism and Me, Part Four: Things Could be Better

Progress has happened. That’s a good thing. Awareness is spreading, more people know what Autism looks like and more people know more about it. That’s getting better. Resources are coming out. Solutions are happening. Voices can be heard. Earlier and easier testing is becoming a thing. This is great. This is wonderful. This is everything that I could have wanted as a young Autiste and more.

But…

Things could be better. We could, for example, be distancing ourselves from the bad solutions and organisations that take all the limelight because of Burden Porn. Hell, we could be getting rid of Burden Porn altogether, or at minimum calling it out as a tired old trope that needs to die.

Organisations like Autism Speaks insist on raising money for a cure. This is a great way to raise money, as the charities looking to cure cancer can testify. You can get loads of money out of cancer and keep the progress towards a cure to a minimum, all whilst living like a monarch off of the “administration fees”.

Any Autiste who knows about Autism Speaks will tell you that it’s a horrible organisation. There’s not one person in the administration of the whole mess who is actually Autistic. Their entire narrative is fuelled by Burden Porn and all about resources for the parents instead of help for the kids. They also tend to encourage anti-vaccination philosophy.

There are too many preventable diseases that can kill a kid. Autism deaths are always directly linked to parents who “couldn’t take the burden any more.” So yeah. More Autistic kids are killed by Burden Porn than vaccines.

Ahem.

There could be more varied narrative about Autistes. Currently, the majority is the young white male. Any female representation is the Super Quirky or Oddball who could be normal if they just tried. Sometimes, they might have a brainy superpower that is generally represented by ghostly diagrams that only the Autiste and the Audience can see.

Personally, I would like an Autiste to stand over writers with a ruler and thwack it over their authorial knuckles if they try bullshit like trying to “explain” stimming with quirky brain power stuff again. I get it. You’d like to find a reason for stimming. Guess what? There is a reason – it makes us feel good. It’s soothing. It’s a means of expressing and venting frustration. We have a reason. Just ask us.

I know it’s just me, but every time I see some script adding useful meaning to an Autistic stim? I flash back to the school yard where some nypical was using That Voice to interrogate me about some peculiar motion I’d been doing that week.

To me, assigning meaning to a stim is just as bad as the deliberately demeaning interrogation about stimming.

Here’s the thing the abled don’t get – you don’t have to be useful to be valuable. Disabled people – even the mentally disabled – don’t have to be useful to be ‘worthy’ or to ‘deserve’ the things that could improve their life and living. People made those things cost more because they want to get as much money as possible out of people who need. I mean – just look at the price of Insulin in the United States. That stuff has increased to more than the price of gold, yet it costs cents per hundred dollars of its price tag to make.

It’s allegedly supply and demand. The demand is high, so they’re justifying the hike in prices to what people are willing to pay. In the case of Insulin, it isn’t that. It’s continuing ransom. Your money for your life. But I digress.

Belief in a cure is a good thing. I’m all in favour of curing debilitating mental disorders. The thing is, there are many Autistes like me who slide through life just being extremely peculiar, or the weirdo. Yes, there are Autistic people who are nonverbal, and that should be helped, but…

Why not work on teaching multiple avenues of communication? I mean… it can’t hurt. Kids in prep through to grade five have fantastic language acquisition abilities and it would be wonderful to have sign language in everyone’s hands. Haha. Yes, it would be costly to implement, but think about how broadening it could be.

Not how useful. I think we need to remove ‘useful’ out of the narrative when talking about the impaired. We’re people. Not tools. We don’t need to earn the right to stay alive.

If we could only divorce savage capitalism from helping people… I think the world would be a better place.

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