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

Friday, May 9, 2014

Blogging the IMFAR Program

Jason of Drive Mom Crazy (who does an Autistic Artistic Carnival every Autistic Pride Day that you should totally check out, by the way,) asked me about IMFAR and what I would want to tell them. Since I'm a neurodiversity advocate with at least some sciency background (mathematics and mechanical engineering majors plus some nanotechnology research) my initial reaction is to start looking at their program and some abstracts and respond to what's being said in those, see what reactions I come up with.

So: The first thing I notice is that the meeting is at a Marriott Marquis, meaning it's expensive. As far as actual Autistic people being able to go, that's a bad sign, so count one against them for failing "Nothing About Us, Without Us."

Then I see the sponsors page. One of the Platinum Sponsors is Autism Speaks. They're terrible. Their status as a platinum sponsor worries me, but I kind of expected it. It means I'm expecting a lot of bad stuff in the programs, as well. Most of the other sponsors I don't recognize, but Autism Science Foundation, one of the gold sponsors, was founded by someone who talked about wanting to kill herself and her autistic daughter on video for Autism Speaks before she cut ties with them, so I don't trust them at all either. Sponsors that I recognize: Only 2, but they're not a good 2.

Now on the "Scientific Program," they're talking about autism "across adult the lifespan" as something where research is new, which, I mean, yes, I'm glad that people are recognizing that autistic adults exist but why is this research new? "Early mechanisms in the unfolding" of autism is maybe an interesting thing to look at, but the way they're talking makes it sound like it's going to be them talking about where we autistic people go “wrong" and that's not cool. How autistic brains work differently? Yes cool. How autistic brains are dysfunctional? Kind of a biased assumption there, and not the bias I like. (Science is political when it includes basic assumptions that are political. So anytime we're looking at humans, it's going to be political. Let's not let the dominant messages pretend to be apolitical, K?)

Special Interest Groups are meeting on the 16th and 17th, there's only two times so you can't go heckle all of them. (Am I terrible for thinking in terms of heckling?) Anyways, from just the titles because I'm not seeing more than that right now:

  • I'm not sure what Risk Assessment, Management and ASD is actually about. Is it assessing the chances that a person will be autistic and somehow managing it? Is it assessing the risks involved in different ways that people react to autism ("manage" autism)? The second one would be interesting if people were looking at the risks of stuff like "ABA teaches people not to say no," but I don't think that's what it's about. (I think it's what it should be about.)
  • Approaching adulthood is an important thing that people tend to ignore because people tend to ignore the existence of autistic adults and pretend that's not going to happen. I'm not convinced they're doing it in a non-terrible way that involves going from one place where autonomy is ignored to another place where autonomy is ignored, but the vocational/jobs stuff has the potential to be cool and services for adults are important. This one really depends on the views of the people running it, so it's probably terrible.
  • Technology and autism has two things I could understand it being about. One is awesome. The other is terrible. I am worried.
    The awesome one is looking into how technology is useful for autistic people. It can be done badly, like when people decide "convenient for folks around autistic people" is more important than "useful for autistic people ourselves," but as long as people get that bit right (I don't trust IMFAR to do this) it's awesome.
    The terrible one is people thinking that technology would somehow make people autistic and looking into that. Um, ick. Especially since that would lead to depriving autistic people of technology in an attempt to "recover” us from autism. Depriving people of assistive technology as a way of making us more functional is backwards and going to backfire.
    I'd go to this meeting I think.
  • Global Knowledge Translation for early identification and intervention is probably code for Western (especially USA) people telling everyone how to do it, which is terrible. 
  • Autism Social, Legal, and Ethical Research has the ability to be good, but when done from a place of seeing autism as deficits only is going to be terrible. So ick.
  • Minimally Verbal Individuals sounds euphemismy. Could do good stuff like AAC and sign and such, but probably trying to make people speak more and that's adding stress so probably not actually good.
  • Sensory Motor is absolutely a thing. I'd be interested in seeing what the differences are in sensory processing and in movement and if we could do this info without pathologizing ways of moving/processing more common in autistic people that'd be awesome. But it's probably going to be about trying to make us move and at least pretend to be processing like NTs do, sads. I'd totally go heckle them and try to get them in the right direction though.

1 comment:

  1. "I'm not sure what Risk Assessment, Management and ASD is actually about."

    My guess is managing risks autistics pose to self & others, like dealing with self-injury, aggression, poor sense of danger, etc.


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