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

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Sunday, September 9, 2012

I am writing a paper (about autism, nanotech is soon)

Trigger Warning: Cure discussions

This FDA approved trial thing (details here, here, here, here, and here) has me scared. I admit it. Because they went and APPROVED this trial, and I can see all kinds of problems with it. And yes, I do sciency stuff, but I am an undergrad and autism is not actually my area, not by official education anyways. If I can poke holes in it, there are big holes in it. So I am going to do this official and nice with my i's dotted and my t's crossed and my sources cited and an annotated bibliography. I am going to trace the story of people trying to cure autism, from the useless to the harmful to the abusive to the fatal, pointing out failures in rigor and ethics all along the way, with the endpoint probably being the FDA study unless something else comes out between now and when I finish.
This is going to take a lot of time. I still plan to have this site update daily, but there will probably be an increase in things that are just what I think and not as rigorous, and there will definitely be days where the update is pretty much stolen from my work on this paper. You will be seeing all my note cards, for example. You'll probably also see some first drafts of paragraphs from different sections yanked together as one thing, and the story of my search for sources. The first edition is this post, of course.
And these are the kinds of sources I am looking for:

  • Study ethics as related to humans
  • Study ethics as related to children
  • Study ethics as related to developmental disabilities
  • Rigor as related to control groups
  • Rigor as related to sample sizes
  • What science is behind this thing they’re testing anyways? (Why do they think it will work, any cure attempts)
  • Nicely citeable things arguing that a cure can’t/shouldn’t exist
  • Nicely citeable things that support the idea that the cure would not actually be voluntary even if it legally was
  • Anything on ethics of informed consent relating to children
  • Anything on ethics of informed consent relating to people with developmental disabilities
  • Anything that supports the thesis that lack of communication should be interpreted as lack of consent in the context of treating a disability that is not fatal
  • Anything that is nicely citable and fleshes out “nothing about us without us” as an integral part of all things disability and all things minority.
  • Anything written on the subject by an autistic person.
  • Special bonus points for being nicely citeable and special bonus points for anything written by an autistic person that fits into any of the above categories.
  • Minus infinity points for Simon-Baron Cohen and Autism $peaks sources.
Sources I have so far are:
Anyone who wants to send me more sources to use or more topics they think I should be looking at is more than welcome to comment on this.

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