Thread by @JHMarble

This is absolutely not how to go about writing a bill. Who are the #ActuallyAutistic stakeholders you worked with?

#NothingAboutUsWithoutUs
#DisabilityJustice

PS - You’re still amazing. LOTS of autistic people think so. Keep it up (just not this bill). We’re here to help.

https://twitter.com/pwcdanica/status/1220771151145771009

HB1722 isn’t an autism bill. It’s an ABA industry bill (an industry that autistic people who’ve gone through it have strong objections to).

@pwcdanica isn’t evil. She isn’t being malicious. She’s a smart, empathetic, much-needed official.

So, what happened? Let me explain.

ABA (as applied to us) operates on false assumptions about autistic people. That’s the root of why it so often causes such damage and trauma. Yet, it’s promoted by leading autism groups. Why?

Well, those groups were built with good intent but not with autistic people. So...

The majority of *leading* autism groups exclude us from their leadership and staff (occasionally we’ll get a token or two). So, those groups themselves are built on false assumptions about autistic people as well. It’s a design flaw.

And it’s these groups which push these bills.

Most folks have little understanding of disabled people as community. We’re seen as individuals with individual conditions. Alas, like any marginalized group, we find each other to form community, culture & consensus. The consensus of the autistic community is against this bill.

Being empathetic to that, consider that politicians work on A LOT of issues (check out @pwcdanica’s twitter thread to see her amazing amount of work). So, they rely on stakeholders to inform them.

So, when an autism group approaches you, a good politician listens.

So, what we have are autism groups saying “this is consensus”. But, what they don’t tell the politician is that it is the consensus of their non-autistic board and staff, or of their funders, or of the pet priorities of their founders. They forget to mention us - autistic people.

And then, the politician hears their message amplified by parents of autistic children in their district (their constituents). The ABA industry and autism groups have ensured there are few other options for parents. That’s all they’re repeatedly told. That’s all the know...

So, of course they are going to be supportive. Of course. They see their child progressing while in ABA. They don’t know much of that would have happened without ABA, or that their child could have been better helped in other ways. They don’t yet know the long-term effects.

And some of these ABA professionals are amazing, empathetic people. Parents see that. They also see these people routinely leave because of poor support training and poor pay. They want to solve the revolving door problem which they see.

They’re then told that to solve that problem, more government support and authorization of ABA is needed. So, they heed the call of autism groups and lobby politicians for that. Yet, ABA therapists leave because of ethical problems as poor practice within the ABA industry itself.

So, if you’re a politician like @pwcdanica and you have autism groups and parents coming to you to say “Please write this bill,” what do you do? You write the damn bill.

So, what do we do?

If you are autisic, speak up. If you are a constituent of @pwcdanica, contact her. Meet with her. Thank her for her amazing leadership and empathy. Show her a better way.

We can criticize, but we need to help. That’s step one. That’s the triage to fix the immediate situation.

Step two is the deeper work, the urgent work. It’s making the case every day that autistic people must be centered in every group or program which purports to be about us. Period.

Autistic people must control our own narrative. We must be empowered to lead. This is about us.

Until we do that, autistics, parents, and empathetic politicians like @pwcdanica will continue to be victimized by this frame. Our outcomes, access & normalcy will continue to suffer.

We’ve been in this loop for too long. How many hundreds of millions of dollars must we waste?

So, support @pwcdanica into deeper understanding. That’s the short-term fix. If anyone’s up for it, she is. However, our drumbeat of work must be on centering autistic people. That’s systemic change. Until we do that, we’ll be doing this short term work over & over again. #GoTeam