Some first-hand reports from IMFAR

18 May

Here are some reports that have been written on IMFAR so far. IMFAR is a three day conference, with one pre-conference day. Saturday (tomorrow) is the last day.

Thinking Person’s Guide to Autism

IMFAR 2012: Genetic Variants in ASD

IMFAR 2012: On Communicating Autism Science

Autism: Friendships in Adolescence from IMFAR 2012

IMFAR 2012 Press Conference

Autism Science Foundation

Reactions from IMFAR Travel Grantees: Day 2

Reactions from IMFAR Travel Grantees: Day 1

Follow Twitter streams

IMFAR

#IMFAR2012

Edit to add:

Here’s an article by Estee Klar:
My First Impressions of IMFAR 2012

I hope to have some articles by autistics soon.

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12 Responses to “Some first-hand reports from IMFAR”

  1. Kassiane May 20, 2012 at 07:39 #

    “I hope to have some articles by autistics soon.”

    Oh that’s adorable. You think we can afford IMFAR. It costs more than an awful lot of us (most of us?) make in a month or 6.

  2. Kassiane May 20, 2012 at 19:50 #

    Yeah I’m aware.
    I also know that it is financially inaccessible to the vast majority of autistics. I know that it was like right next door to Corina (and that it was a struggle). I know that Alex is on the Autism Speaks payroll, as is John Robison. I know that JER has been classist since before he heard the word autism. I know Stephen Shore was also there, and that like the rest of this group, with the possible exception of Corina, he can more or less pass.
    I know that for your average autistic I am doing financially pretty well, even though I live well below the poverty line. I know how much I *didn’t* eat to afford every conference I ever made it to-and those are the ones with rates specifically for autistics, and that was being 4+ to a hotel room.

    IMFAR, like all autism conferences (with the exception of AutCom) is financially inaccessible, and that’s not even going into the fun of paying all that money to hear how broken you are.

    • Sullivan May 21, 2012 at 18:45 #

      Kassiane,

      I hope this reads sincerely–I wish I had the money to sponsor you to go to IMFAR. I’d like to see researchers get your perspective.

      Not all of IMFAR is the “broken autistic” message, but it is there.

      Yes, IMFAR is out of the financial realm of possibility for a lot of people. My guess is that Marjorie Madfis stayed someone fairly inexpensive to make the $1000 cover so much. Of course this is even more difficult for autistics. Interesting how soon this came following on Paul Shattuck’s study on unemployment and underemployment for autistics. The pre-conference event this year was a good move. I heard talk of trying to put some of the talks online last year.

      One thing that needs to be added to this discussion is the fact that for many autistics no amount of money would make the IMFAR accessible.

  3. Marjorie Madfis May 21, 2012 at 13:25 #

    I am a parent who was a grantee of Autism Science Foundation. They cover $1000 of the cost, which for me covered registration, hotel and airfare. I paid for meals and airport transfers, etc. So I recommend that you apply for next year. It was very techinical but I found sessions that were appropriate for my interests. The posters were really informative. I started a blog so perhaps that may be informative from a parent perspective. Let me know what you think.

  4. Kassiane May 21, 2012 at 20:50 #

    @Marjorie You assume autistic people don’t apply. We do. But we aren’t exactly high priority, especially those of us who tell people they’re wrong. ESPECIALLY especially those of us who know enough science to be like “you are wrong and this is why”. (Something I’ve been doing for 13 years, always under my name. And I’m a premed student who has been dabbling in neurology since HS. I’m their worst nightmare).

    @Sullivan The thing is, that shouldn’t be even remotely necessary. I’m writing a thing now on financial inaccessibility-the thing that pretty much all autism conferences have in common is that they’re financially inaccessible & that they’re all about fixing us. If they’re accessible then they may have to deal with dissent and we can’t have that. And that’s just the financial issue…conferences totally wreck me (& a lot of the rest of us) which is…well, it’s about us without us.

    ….I have lots of Opinions on the autism industry. Mostly that it’d be much happier if people like me shut the hell up like good little defectives. Eris forbid they actually have to MEET us.

  5. Science Mom May 22, 2012 at 02:48 #

    @Marjorie You assume autistic people don’t apply. We do. But we aren’t exactly high priority, especially those of us who tell people they’re wrong.

    @ Kassiane, what makes you think this is the case? IMFAR isn’t exactly AutismOne.

    @Sullivan The thing is, that shouldn’t be even remotely necessary. I’m writing a thing now on financial inaccessibility-the thing that pretty much all autism conferences have in common is that they’re financially inaccessible & that they’re all about fixing us. If they’re accessible then they may have to deal with dissent and we can’t have that. And that’s just the financial issue…conferences totally wreck me (& a lot of the rest of us) which is…well, it’s about us without us.

    I think you are putting too much emphasis on thinking that dissent will have to be dealt with and a strawman to boot. Your point about inaccessibility is valid. Why not simply focus on that? What suggestions do you have to make the atmosphere more autist-friendly? From what I have seen of the past presentations, I have found a dwindling number of “curebie” abstracts as IMFAR has been leaving the vaccine-damage claims behind.

    ….I have lots of Opinions on the autism industry. Mostly that it’d be much happier if people like me shut the hell up like good little defectives. Eris forbid they actually have to MEET us.

    You certainly do and some of them could even be useful if you would curb the self-pitying bitter act and quit with the strawmen. Your experiences and educational direction are huge assets and there will come a time when you will have to MEET “them” and WORK with “them” given your aspirations. Think about it.

  6. Kassiane May 22, 2012 at 03:14 #

    I’ve been doing this longer than you’ve known what autism is, so don’t get all lectury at me. You’d be burned out too.

    I know that including us isn’t something they want to do because….dundunDUUUUUN…I know autistics who applied. I applied last year, this year it was an utter impossibility bc of when school & Regionals fall. The acknowledgement of said application was…underwhelming. I know they GOT it, because email return reciepts are the bomb, but I don’t know that they actually read it.

    I’d believe they gave 1/8 of a shit if they mentioned us as people on their website. But they don’t. So there’s a start, acknowledge that we are, in fact, the primary stakeholders.

    Use that information to acknowledge that most autistic people live closer to how I live than how JER lives (and that’s honestly being optimistic. I do financially very well for someone with as few spoons to allocate to All The Things! as I have), & that means that to hear us, they’re going to have to make that possible.

    That means a cheap-ass ‘autistic people’ rate. ASAs idea of a cheap ass ‘autistic people’ rate is approximately 50% of a month of SSI. Be better than that. This shouldn’t be difficult.

    But until there’s a cheap-ass autistic people rate-and, if they really want to impress me, a conference roommate finding service or listserve, and if they really REALLY wanna impress me, grants earmarked for getting AUTISTICS there-the rest of it barely matters. I mean, taking steps to have transcripts and to make it not a sensory nightmare and to have food options in some way available for picky/allergic eaters, that all really helps EVERYONE, but most people aren’t as wrecked by the lacking in these areas as we are.

    I want to see research that actually helps us. When I get done with school I want to do research that actually helps us. But the overwhelming view I’ve gotten of the “autism” community…from ASF to ASA to AutismWeeps to obviously the quack people…is that my research would be unwelcome because I look at the whole thing from a vastly different perspective.

  7. Science Mom May 22, 2012 at 13:58 #

    I know that including us isn’t something they want to do because….dundunDUUUUUN…I know autistics who applied. I applied last year, this year it was an utter impossibility bc of when school & Regionals fall. The acknowledgement of said application was…underwhelming. I know they GOT it, because email return reciepts are the bomb, but I don’t know that they actually read it.

    Okay, so you and some others you know didn’t receive a travel grant. Do you know with certainty that no autists received grants? I see that ASF has awarded travel grants to autists: http://autismsciencefoundation.wordpress.com/2012/03/22/announcing-our-2012-imfar-travel-grant-recipients/

    I’d believe they gave 1/8 of a shit if they mentioned us as people on their website. But they don’t. So there’s a start, acknowledge that we are, in fact, the primary stakeholders.

    INSAR’s Community Advisory Committee has autists. Just mentioned as people with no self-congratulatory heralds they have autistic advisors.

    But until there’s a cheap-ass autistic people rate-and, if they really want to impress me, a conference roommate finding service or listserve, and if they really REALLY wanna impress me, grants earmarked for getting AUTISTICS there-the rest of it barely matters. I mean, taking steps to have transcripts and to make it not a sensory nightmare and to have food options in some way available for picky/allergic eaters, that all really helps EVERYONE, but most people aren’t as wrecked by the lacking in these areas as we are.

    Viable suggestions but know that no one is out to impress YOU; simply more should be done to make IMFAR more accessible to autists and parents of autists. Now have you (in a professional and helpful demeanour) made these suggestions to IMFAR?

    I want to see research that actually helps us. When I get done with school I want to do research that actually helps us. But the overwhelming view I’ve gotten of the “autism” community…from ASF to ASA to AutismWeeps to obviously the quack people…is that my research would be unwelcome because I look at the whole thing from a vastly different perspective.

    You’re not the only autist in the world you know; there is a lot of research that helps others if not you. A vastly different perspective would not be unwelcome at all as long as it has geralisability and external validity in terms of a research perspective and application. And are you merely assuming this or have you had research proposals rejected by these organisations?

  8. Tom May 22, 2012 at 15:29 #

    Scientific associations don’t usually reach out to the patient population. Their mission is to foster the research community they serve. Going off on a rant at a meeting isn’t productive. Contributing published work is the only way to influence a field.

  9. Kassiane May 22, 2012 at 20:22 #

    Tom, “about us without us” is not acceptable. And I’ve talked to plenty of researchers in epilepsy who give a whole ENTIRE shit what people with epilepsy think!

    I’m still working on research proposals, and for that matter the education to have them be viable (what with a special ed degree not being exactly scientifically rigorous. Med school, it’ll help).

    IMFAR knows what I think about the utter lack of accessibility. I have yet to see any indication they care.

  10. Science Mom May 22, 2012 at 22:43 #

    I’m still working on research proposals, and for that matter the education to have them be viable (what with a special ed degree not being exactly scientifically rigorous. Med school, it’ll help).

    Do you have any mentors in the field of your research proposals? If not, while my expertise isn’t in your area of interest, I can help with the formatting and also try to get it into the hands of relevant experts for review.

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