Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Monday, May 27, 2013

Massachusetts State House Hearing Part 2 (H76)

I was at the Massachusetts State House for the hearing on May 21, 2013. This is essentially my liveblogging of the testimony on H76, except that it gets put up later. This is in four separate posts, the others can/will be found here:
Lydia Brown's written testimony can be found here.

Trigger Warnings: Abuse, ABA, possible presumptions of incompetence.

H76
An Act to provide equal access to medical treatments essential to children with autism. Member of Autism subcommittee testifies.
Requires coverage for ABA (ew) and AAC devices (yay!) It would allow more children to receive services. This person has a child with autism and said that the diagnosis was hard to hear. (I blame societal ableism for this.) She also notes the number of autistic people who are not speaking (this is what AAC is for) and the tendency to avoid eye contact/engage in repetitive behaviors (um, not actually an issue unless you make it one, so SHUT UP.) Also notes SIBs, which are potentially problematic, but ABA isn't going to fix the root cause.
2nd testimony: ABA program director (EW) is supporting the bill. "Autism and those affected by it."... CAN WE NOT. Really, can we not use that euphemism? Because that's what it is. Talks about all kinds of things that therapists like to help with, helping a person with their first job or learn to shower independently. Not talking about suppressing stimming. I hope they know better than to try, but I doubt it. Also talks about how education is lacking for us, which is an issue. They think ABA is a form of "good" education for us, I disagree. By the time they've changed it enough to be not directly abusive, I'm not sure they can really even call it ABA anymore. They have to call it that, though, because insurance. Which is an issue that also needs fixing.
3rd testimony: I think it's the first person from H75 again. Wanting to get the EI coverage to carry through so that people can get helped. It's apparently a bipartisan bill. Talking about how this affects everybody. This is apparently also a high priority thing for the ARC, will need to look up who all they are. Notes again that 50% of us are nonverbal or have very limited speech, wants to have iPads and other AAC devices covered. (I'm not sure I believe the 50%... maybe just kids at/below a certain age, because I do know speech delay is a thing?)
4th testimony: Everyone's saying how great ABA is, how effective it is except for Autistic adults, who are all "This gave me PTSD, stop it." But no one listens to us... and this person isn't bringing up our issues with it at all. Heck, even Carly Fleishmann has brought up some issues, says it might be the cause of her OCD, but no, this person doesn't bring that up at all because ABS is apparently wonderful. early intervention can apparently mean huge savings over the course of a lifetime- savings over what alternative, might I ask? It's not like I've seen much in the way of education for Autistic people that is actually good. Oh, good, she's talking about the communication thing. Notes that all the behaviors get worse when communication isn't possible, which is a bit of a "well, duh" but needs stating and is a better point to hit than how "awesome" ABA is. Because trying to ABA away a behavior that is trying to communicate a thing? Really not OK.
5th testimony: Therapist, director of something. Finds that demands for services increases with these sorts of things because awareness is increased and people figure out that this would be useful. I'm not entirely sure what the aim of that point was. Maybe so that the government knows that there is a big demand even without everyone knowing it's a thing that exists, so it's important due to high demand that's just going to increase.

I'm not entirely sure how I feel about this bill. ABA being the thing that is covered really squicks me, but I want an iPad or other AAC device in the hands of every autistic person who can use them. I guess it's going to come down to "if parents and service providers make good choices, this can be very good, and if they make bad choices/presume that lack of speech means incompetence, this will be very bad." That's about the current status quo, though. Meh. I know it's super important, though, because of the AAC thing and that it covers non-dedicated devices (things like tablets that can be used for more than just AAC.) So I want it passed because of that bit. I just don't trust anything with ABA as a big thing. Which means I never trust the government agencies related to autism. Ever.



3 comments:

  1. early intervention can apparently mean huge savings over the course of a lifetime- savings over what alternative, might I ask?

    I think people believe that early intervention will make autistics be (or seem) more normal, and that being (or seeming) more normal will make one more likely to be "independent" and employed as an adult. And therefore, by spending money on early intervention, you don't have to spend money on paying for group homes for autistic adults -- or something.

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