Monday, May 9, 2016

Going to IMFAR 2016? Read These Articles About Autism Research And Presentations First

TEDxPurdueU Presents: Let's Talk About Autism
Photo © Bobby Wade/Flickr
[image: White woman with long brown hair and glasses,
giving a presentation at a TEDx autism conference.]
Our editors Carol and Shannon are spending the latter half of this week at IMFAR, the International Meeting for Autism Research, which is May 11 - 14 in Baltimore, MD. If you're going, say hi! You can also follow us on Twitter at @ThinkingAutism, @ShannonRosa, and (Carol) @AspieAdvocate.

IMFAR has improved a lot: We are glad to see the annual conference welcome increasing numbers of autistic speakers and attendees, so that autism researchers can listen to the people whose lives they are studying (and ideally trying to benefit), and vice versa.

But since our editorial roles include being autism research ethics gadflies, we have to note that IMFAR is still mostly about the medical model view of autism and disability (curing and fixing), rather than the social view (understanding and accommodating). We'd like researchers to do a bit better in this area. So here are a few articles we'd like you to read before you attend (or read about the goings on at) IMFAR.

Don’t ever assume autism researchers know what they’re doing, by Mel Baggs
One research tool that has angered and frustrated me for years, is Simon Baron-Cohen’s “Reading The Mind in the Eyes” test.  It is most often used to show that autistic people lack empathy and the ability to figure out what other people are thinking and feeling based on body language and facial expressions.  Unfortunately, the test has very little real validity:  It measures all kinds of things it claims it doesn’t measure, and fails to measure the things it claims to measure. 

Different autistic people’s descriptions of why they avoid eye contact differ.  And some autistic people make eye contact, some even make more of it than nonautistic people do. But many autistic people describe making eye contact as involving intense anxiety, physical or emotional pain, sensory overload, terror, or a sense of being flooded with the other person’s emotions.  Any of these things could prevent an autistic person from making a lot of eye contact, or from looking at people’s eyes in general, even as pictures on paper.  If there’s something that a person has spent their entire life not looking at, then obviously they’re not going to have skills that most people get from looking at eyes
What it's like to sit through professional talks about autism as an autistic person, by Patricia George
For the next 45 minutes I tried my very best to somehow see past the language and find something to take from this talk that would have been helpful to an actual autistic person.  I sat and thought about the information these students were taking in, and the parents. It was a “through the looking glass” experience. Like when you overhear your parents talking about you when they think you can’t hear them or can’t find out.

“Burdens”
“Cause depression”
“Disruptive”
“self harm”
“feces smearing”
“suicide”
“fat”

(Here’s where awareness meets acceptance. These words, even insisted as true, have actual consequences for real people)

I’ve never experienced anything quite like it before and I hope to never again.  That’s the most shocking part of this for me. That despite all my advocating I still didn’t have the full realization of just how backwards and downright dangerous the language around Autistic people and Autism, are.
Before talking about autism, listen to (autistic people and their) families, by Shannon Des Roches Rosa, at Spectrum
Most [researchers] have the best of intentions, but their goals don’t always translate into the types of benefits that autistic people and their families need most.

I’d like more researchers to take their influence on public perception seriously. So I have some advice for scientists about how to get the word out, whether they are reporting their findings in a journal or talking to the media. I’d also like to see them bring autistic people into the conversation early in the scientific process.
Minority families are often left out of autism diagnoses, supports, and research, by Amy Yee, at Spectrum
[Individual] stories hint at some reasons why minorities are underrepresented in studies of autism and have little access to treatment options. Broad socioeconomic, cultural and language barriers keep minority families from participating in both domains. New studies are delving into ways to recruit and retain minorities in research, as well as developing better screening, support and treatment programs, all of which can bridge the gaps that lead to the exclusion of these groups.
On ableist and classist assumptions about AAC and screen time. Meryl Alper interviewed, at The Ruderman Foundation
As with any new advance, there is the theory and then there is the practice. While in theory AAC devices may seem like ever-improving, unprecedented magic bullets allowing for greater communication and inclusion for people with disabilities, the reality of their benefit depends on who is using them and in which environment. And if you’re thinking this is both fortunate and unfortunate, but there’s not much you can do about it, I’ve a small suggestion: next time you encounter a youth with eyes glued to their screen, don’t instantly think them to have poor manners or to be anti-social or lament the ways of the generations preceding yours. Just don’t pass any judgment.
We'll be quizzing people in Baltimore, so be sure to read the articles above before we see you. (Just kidding. Maybe.)