Thread by @ekverstania

I want to tell you something that many people in the autism industry don't know:

Many well-known autistic activists in your local community and the international autism advocacy community ARE STILL BEING ABUSED BY THEIR PARENTS and they can't afford to tell the world.

Many.

Some of them lead or moderate support groups on Facebook.

Some of them arrange outings for autistic people and support communication rights for nonspeaking people.

Some of them run registered charities for families.

Some are speakers at conferences.

Many are chronically ill.

Some are creating awareness of autism through art.

This is not about me. I am not being abused by my family.

Most of my friends can't go public about their abuse.

One risks being found and murdered.

Others risk being cut off from various types of support.

For some, there's a complex web of social manipulation, denial of their disability and more.

Most have witnesses.

It doesn't help.

Systems of justice for disabled people are just not strong enough.

We have each other. That's who we have.

I know parents who abused their children unwittingly by throwing every possible autism therapy possible at the poor kid. Some of those parents are repenting now. Some are in therapy along with their children to heal the relationship.

I'm not talking about those ones here.

There are parents who would deny that they made mistakes, let alone ever did anything immoral. Parents who blamed their disabled child for being naughty, difficult or whatever else from the tenderest years.

You can't ask a famous autism advocate on a panel at a conference what their relationship with their parents or caregivers is like (or even WAS like, if their parents are dead). You could be placing them in a very difficult situation.

I can say this because I personally know many autistic community leaders and advocates in my own city and country and throughout the world, people who in their own ways are working to create a better life for all.

And this... This is fragile.

https://twitter.com/ekverstania/status/1548283637514113028?t=uNjx9ekcaxjmqYISyP26WA&s=19

We're imperfect.

And sometimes we're straight up mean.

Great question in the context of this thread.

https://twitter.com/syrnhuyslrtbn/status/1548296352353816577?t=ptbDCV3-KdYS8xVOp5gWlA&s=19

Carly, a nonspeaking author and talk show host, disappeared from public life, after publicly saying that she was sexually assaulted by her father's boyfriend, and posting evidence on Facebook.

Her family scrambled and said that a 'disgruntled former employee' had hacked Carly's Facebook page and posted these things, and that Carly no longer wanted to be a public person. There has been no reliable news from Carly since then.

Here's a common theme: A toddler telling a parent that they're in pain, only to be dismissed, like, "Stop your nonsense/That can't possibly hurt/You're making it up/You're lying/You're just looking for attention—" as though pain should not get attention.

https://twitter.com/ekverstania/status/1500198037716705291?t=Ps1FOCNb13VeMrY4Mg8uGg&s=19

There's a big difference between this and "I feel terrible! I screamed at my autistic son, who has PANDAS, when he didn't want to get into the car because of his OCD. I know it's not his fault, and then I went and caused him to melt down. I'm not coping! I messed up!"

One community leader hasn't even gone public about her own autism diagnosis because she's seen how her parents act towards her children's labels.

So she continues in the role of 'parent peer support' person, holding it together and masking like crazy while craving connection with people who can accept her for her autistic self. She doesn't feel she can afford to be known as an AUTISTIC autism advocate.

Do you know how many people—not just autistic people, but people generally—are estranged from their families? There's been research on this in America, and the percentage is high.

theconversation.com/amp/what-is-fa…

If you're disabled, though, it's often harder to cut ties.

And if you're disabled, at risk of homelessness, well known in the community, AND you can't go back to your family, but you also can't risk having this strained family relationship publicly revealed, because it would make your family look bad, and then... then... then...

Oh yes!

Many autism professionals don't seem to know about that part either: well-known autistic activists who have a large following in Twitter, or who've spoken at conferences, may be living very precariously.

Kassiane Asasumasu was able to speak about the abuse, because their parents were the ones who cut them off.

thinkingautismguide.com/2011/09/advoca…

I can't even afford to tell you in detail about some of the stuff that goes on in the name of religion, without outing people... Parents performing exorcisms on their children, and relying on these same children for money when they get old...

The guilt of leaving your abusers destitute...

I'm probably supposed to finish this thread with some kind of directive now, some 'What we can learn from this' message.

Maybe one of those messages is this:

Parents who want their children to be happy will often seek out the advice of #ActuallyAutistic people, because they want to learn about avoidable mistakes, and about what works well according to people who are like their child.

Also:

Because no two people are exactly the same (so there will be nobody who's EXACTLY like their child), and because people could differ in their perspectives, they will seek out the input of as many autistic people as possible.

Some autistic people are not going to be very relatable. Some will misunderstand you, or jump on you for saying the wrong word, and they'll accuse you of things you don't even understand.

Continue to seek out the input of as many autistic people as possible.

Not everyone is comfortable in discussions, and some don't want to discuss their own children online and violate their privacy that way. I know some lovely parents who are quiet, who lurk on Twitter and Facebook and who learn from autistic people without asking questions.

They read the books and blogs that autistic people write.

When parents DON'T do things like this, we should be concerned.

We should be concerned because their children are probably not getting the best support they could be getting, because ableist professionals never told them that autistic adults know helpful things.

Or worse: they could be actively avoiding autistic input, because they're afraid of having their ableism and their abusive actions revealed.

I've seen some parents latch onto specific activists because they hear a message that goes something like this from them: "As a parent, you want the best for your child, and you are the best person to decide what they need. Try everything, see what works, never give up!"

This sounds right; other people shouldn't be forcing parenting ideas or therapy decisions on you.

But it's so generalised and platitudinal that it's just not logical or true.

Not all parents want what's best for their child.

Not all parents are the best to decide what their children need. (Sometimes the children themselves are much better!)

You shouldn't try everything. Really. We can tell you. Some things really ARE universally bad.

"See what works"—works for whom? For achieving what?

There are autism professionals who say that their therapy is evidence-based and that it 'works', and what it achieves is measurable in great detail; yet the things that are measured don't contribute to agency, self-determination or happiness.

"Never give up"—Sorry, no, there are some things you really SHOULD give up on. I know of parents who are still praying for the miracle day when their teenager will start talking, but they are not interested in listening to autistic people who emphasise COMMUNICATION over speech.

I don't know who I wrote this thread for; maybe it's mainly for autism professionals and autism charities? You're the ones steering parents towards solutions and claiming to offer support when they struggle.

I have a handful of friends who are autism professionals, and I'm in close ally relationships with several more. They already encourage parents to listen to as many autistic people as possible. They provide resources to get them started.

A plethora of autism professionals DON'T do that.

Some of those professionals are abusing autistic children themselves.

Listening to autistic people doesn't guarantee that someone won't be a jerk. Being autistic doesn't protect anyone from sin either. We're human.

There is no true safe space.

But there are jolly well some realms where evil prefers to reside.

Maybe this thread isn't just about autism. Maybe it's about looking out for children, all children, but particularly troubled and different children; maybe it's about being a safe person for them within your capacity.

Maybe it's also about adults who are stuck in abusive situations, and about being a refuge for them within your capacity.

I don't have the energy now to create a list of caveats about getting yourself sucked into other people's issues and having your sympathies exploited to the detriment of everyone in the equation.

So for now, maybe the message should just be that there's collective community wisdom out there to be had even if the people imparting the lessons don't all like each other.

Know that people may be talking from a place of experience—their own experience, their friends' experience of things they can't reveal.

There's a clapback which many autistic people can't afford to give to the common accusation by parents who don't like to listen, that "You can't say anything about my situation because you're too high functioning to understand real autism"; it's this:

"I understand real abuse."

They can't afford to say it, because they could be wrong about the situation at hand—maybe it isn't so clearcut.

[This video insert won't make sense to most people, I'm just adding it for my own sense of completeness.]

Also, it would mean opening themselves up to scrutiny; and anyway, what good could it do?

This is not a rhetorical question. It does have an answer, and the answer isn't "none".

But I suppose I should pause here, and go to sleep; so here is some resin dripping from a pine tree next to the common behind our house.

And here are some more threads on autism and advocacy based on what I have learned from thousands of people.

https://twitter.com/ekverstania/status/1536037179956289537?t=qXZoxx-9IhU5ez8dB_bk3w&s=19

This thread got a lot of retweets in just a few hours, so here's a tip: don't go around asking the autistic activists you know whether they're one of the people Tania is talking about.

Autistic people hate having to lie, yet they may not feel safe to say yes to you either. So...

...rather just send them a private message saying something like, "Hey, if you're ever organising something/trying to get a message out to the world/looking for people to amplify your cause, and you don't feel you can ask your family, feel free to try me, maybe I can help."

Some people, including me, just don't feel at liberty to ask family to support certain itiatives (like asking my mother to help promote community fundraisers). So a thank you should not be read as a confirmation of abuse. But at least you will have gotten your message home.