So. Earlier I wrote a not-so happy post about the USA Today #autismchat not having any autistics on the panel of experts. I'm still not happy about that, but Liz Szabo, the person who pretty much ran the chat, commented on my post about it, and her comment was GREAT. As far as I'm concerned, since the autistic self advocates showed up anyways and people who came in with open minds learned a lot (like Liz!), it was worth it. Really. I don't demand perfection. If someone new to covering autism, as she says she is, misses the not nearly as well publicized self advocates the first couple times but is open minded and includes them once she figures out we exist, I actually think that's great. It means that person is way more likely to be an ally than anyone who excludes self advocates on purpose! And considering the number of autistic people who don't know how bad for us Autism Speaks really is, I can't really blame her for not having known. There is this thing called a learning curve. Learning curves don't make mistakes no longer incorrect, but they do make reasonable people more tolerant of earlier mistakes as long as the person really is learning. Blast, it's not like I get everything right. I just had the good fortune to know self advocates before I got into autism stuff and before I was diagnosed. Main point being, I think she has good intentions.
I mean, take this quote from her comment:
``It didn't occur to me to "book" any families or people with autism,
because I was just hoping they would show up, like they have shown up
for the cancer, diabetes, etc panels."
That's not someone trying to exclude us. It's just someone who hasn't looked for the people who are autism experts in the sense media uses and are themselves autistic (yes, such people exist!) Also from her comment:
``Now, I have met lots of great autistic self-advocate, even more parents
of autisic kids, and I can be sure to "book" them as experts if we ever
do this again, and even interview them for future stories."
Also not someone TRYING to exclude us because of not wanting to hear what we have to say/not caring what we think/insisting that we necessarily want to be cured even when we have said that we don't.
So, if you're reading this, Liz, I'm glad to have heard from you. You sound like an open-minded person who wants to cover the subject well. If you listen to actual autistic people, I consider that a huge success, even if said other autistics happen to disagree with me on nearly every count. I certainly agree services are important! (I just don't like all the organizations that talk about services.)
If you want to know why I don't like Autism Speaks, go watch the videos ``Autism Every Day" and ``I am Autism" (If you can track them down amidst the angry responses!) then look at the organization budget. Most of it is for fundraising or research, and most of the research is for cures or pre-natal testing. If you know the stats on how many babies who would have had Down's were aborted because of pre-natal testing, you might understand why autistics could dislike the idea of pre-natal testing for autism. Very little of their budget actually goes to providing services. Also look at their board of directors and at how much of their video time is actually autistic people speaking, which is what the name would make you think they are about. I know people who have been told they were too autistic to understand the issues at hand or who have been told they weren't autistic enough to be facing the issues, both by Autism Speaks people. Hang out on enough blogs written by autistics, and you will find that there are a lot of us who really hate Autism Speaks. (Help us get our voices on mainstream stuff despite them? We tend not to get much publicity from mainstream groups, who tend to listen to Autism Speaks, so most of our stuff is less well known. It's sometimes a bit of a reinforcing cycle.)
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
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