An Autistic Woman Feels Alone at INSAR

“The definition of autism itself is biased against people who have it. The condition is characterized by a suite of negative characteristics including problems with language and social interactions.  Autism’s many advantages are not part of the diagnostic criteria.”

Dr. Laurent Mottron, Montreal, 2011

I went to INSAR 2019 on my own, with no particular agenda other than to get as much out of the experience and relay it to my autistic contacts.  What I didn’t expect was how much it would take out of me.   Thanks to a kind invitation, I had a place to stay, but everything else cost me, including lost income from self employment.  

I was alarmed when Dena G sent me a message that she had her whole agenda mapped out.  As she was a researcher herself, she may have had advance access to the schedules.  

What was I heading into?  I registered for the community advocate rate of $100 U.S. the first day it became available, but found information sorely lacking until the start of the convention.  I knew I had several areas of interest, but I wasn’t an accredited journalist.  I thought I had my priorities straight:  research that specifically studies autistic adults as opposed to children and youth; how many had significant numbers of women included; and were older women’s needs acknowledged.

There was good and bad news……

  1. The app that listed all the abstracts was only uploaded the morning of the first day (coinciding with the pre-conference) so I had to teach myself how to use it (not easy as I’m no techie) and try to allocate my time with 1800 submissions.  Because of the secrecy until May 1, I was not aware the CAMH study I myself advised on was to be unveiled!
  2. If the program schedule (see below—it is daunting) had been available sooner (maybe some released every week in the month leading up to the convention), the autistics present could have spread themselves out more; they tended to go to the same talks.
  3. Several autistic women had posters in Room 710 which I called Auditory Hell.  There were earplugs at check-in but many didn’t know about them.  The poster room was a constant barrage of excited talk and fluorescent lights.  At least Autistics Aloud (with my new friends Patricia, Louise and Aaron,) were stationed near the exit door. 

DAY ONE – Travel and registration   Song (an 80s theme for the event, when most of the researchers present were toddlers.) “Never Surrender” by Corey Hart.

Simon Baron-Cohen (hereafter SBC), the outgoing president of INSAR, mentioned several times including his welcome in the program that the Executive Committee has worked to “restore the balance between biological and non-biological science.” in the programming, as though this was keeping delegates away (it didn’t—they had their highest attendance ever).   This seemed to be catering to the neuroscientists, geneticists, and behaviorists.  Though this is an event by scientists for scientists, we were made to understand that autistic voices would be welcomed.   Yet stakeholders were defined as those “affected by autism”, a rather nebulous concept which did not centre our voices in the discussions.

The only INSAR advisor who is autistic is John Elder Robison.  No disrespect to his amazing efforts to champion our needs, but he is sidelined on a Community Advisory Committee and is listed as Ex Officio.  One person, as qualified as he is, does not equal autistic representation.

As the first full day wore on, my roommate and I attempted to invite the women (who seemed to outnumber autistic men at the event) to a meet-up at our hotel the next evening.  I had tried to organize this before I arrived and got nowhere.  The only event, a stakeholder lunch, included researchers and allies.

We put up a poster in what passed for a sensory break room, and touched base in person with as many as we could find.  Due to late and poor communication on our part, D and I succeeded in getting six attendees and one local resident to come.   As far as I know this was a first for INSAR.  What’s more, four of the meet-up attendees were researchers (not all were ‘out’; one took the photo.)   I suspect there are many more who don’t disclose.

DAY TWO—Before and during breakfast D and I learned to plan each day’s strategy, especially noting the poster numbers (the family stakeholder ones seemed to be at the back of the room so I started there, and worked my way to freedom.   There has to be a better way than to endure this onslaught of input for two hours at a time (see notes at the conclusion.)

80s Song of the Day: “Women Around the World at Work” by Martha & the Muffins

I became the T-shirt girl, trying to influence the toxic environment with my slogans.

This day I wore my #NotJustCuteWhiteBoys logo.  On the back it said “Spectrum Sisters Rock!” as I was trying to find people to invite to the meet-up.  

I got a strange question from someone behind me on the escalator, asking did I have a sibling with autism.  This is an example of the mindset that it couldn’t possibly be me attending in my own right.  Just as Spectrum Women are not Women who know someone on the spectrum!

DAY THREE—battling exhaustion by this time.  Played some Prince to get the blood going.   Dancing around our suite to Raspberry Beret “she walked in through the out door”, going against the flow as usual….

We had skipped the keynote address in order to have a nice Montreal deli breakfast, home-cooked oatmeal that seemed to sit well with me.  You have to pace yourself against the continual assault of all that science. (Yes I was humming She Blinded Me with Science!)  To conserve my spoons, I skipped talks on children and adolescents, drugs and interventions, and covered only those topics which could influence women’s quality of life.  I still don’t get the impression most researchers acknowledge we age, are parents and grandparents, or struggle with health and employment.

The Real Problem is right in the mission statement of INSAR (which after all was formed by parents in the days of Cure Autism Now to interest scientists in autism research.)  “To improve the lives of people affected by autism….”  

DAY FOUR:  I wore my Neurowonderful shirt to the 7:15 a.m. session (Let’s Talk about Sex, Baby! I tuned in my head.)  It said I love someone who is Autistic (it’s me).

I think the talks on the last day were the best of all, plus my lunch with Jon A from Flow Observatorium in England (see tweet below).   We were both tired of the vegetarian box lunches (and all the plastic waste—is there no better way to feed 2500?)

Were there enough autistics there (approximately 5% according to JE Robison) to #FlipTheNarrative?  Time will tell; we had to push the envelope to be heard.  Next year’s Chair in Seattle, Sara Jane Webb, is accepting Emails and Tweets @PBSLab_Webb,  and SBC has welcomed Opinion pieces to INSAR’s journal Autism Research. [NOTE:  INSAR 2020 was cancelled due to the COVID-19 pandemic.]

The Scientific Program chairs lauded the advances in research as “essential to the success of the meeting.”  I would ask if these “autism advances” are equally “advances for autistics.”  This paradigm shift is sorely needed.  SBC mentioned in his welcome that the point is to “understand autism and help autistic people.”  Frankly this is backwards.

Regardless of whether you follow the medical model, social model or some combination, the aim is to serve the cohort you are studying.  No, not the parents and teachers but autistics themselves.

Sue Fletcher-Watson, one of the researchers I grew to respect over the four days, tweeted two reviews (@SueReviews).  In the second one she offered these trenchant observations:

“BUT none of these things – passion for science, excitement in discovery, the chance to break new ground–is more important than the bottom line which is, how does this help autistic people now, or in the future? If we all keep our eyes on that prize, we should be excited to attend a conference about autism research (especially one that is also inclusive of autistic people, natch!) regardless of the disciplinary “balance”.

“If our shared values outweigh our disciplinary differences, that’s what makes for a brilliant conference.” She means getting out of our research silos!

So, what is SUCCESS at INSAR?  Just surviving the sensory overload for several days?  Grabbing a quick word with someone in a hallway, getting your question answered during a panel?  I hope that’s not all.

It seems there is a hierarchy of success at INSAR—(from lowest to highest achievement, you can argue about the placement)

8) Getting your Poster accepted

7) Being invited on to a panel

6) Having your paper published in a reputable Journal

5) Getting a promotion or a plum research assignment funded

4) Giving a 12-minute oral presentation

3) Winning an award (in Sarah Cassidy’s case this was well deserved)

2) Moderating a panel session

1) Delivering a keynote address

Again, Fletcher-Watson elaborates on the hamster wheel researchers get on:

“One,… Either the panel [by a group of researchers] gets accepted as a whole, or it might be that individual abstracts from the group get accepted—either as oral presentations (talks) or poster presentations. Two, an individual researcher/team can submit a single abstract.  That will either get picked as a talk, or as a poster, or rejected from the conference. Basically, having the chance to present orally— on a panel or as an individual talk—is considered more prestigious.”

Even before I arrived in Montreal, an inflammatory article in Spectrum News (which is funded by SFARI) created a controversy over the request last year for flapplause (misspelled flappause) by a few autistics.  The scientists, mostly unquoted, felt miffed that they didn’t get the applause by which it was reported they measure success! 

Overall I’m disillusioned about the research into the female or more internalizing experience of autism.  When I thought later to search the Abstracts on the word “Women”, I came up with 26 papers and presentations that directly mentioned them:   out of 1800!

With the increasing accuracy and rates of diagnosing women/non-binary persons and girls, maybe we can get rid of research that doesn’t capture enough females to even be statistically relevant.

For other good reviews, check Shannon Des Roches Rosa or Sara Luterman on specific papers.  For now, I would urge researchers to “brainstorm with your colleagues” all you like, as was requested in the program.  Just don’t do Everything about Us Without Us.   Autistic adults should be the primary ‘stakeholders’ in the participatory models now being proposed and utilized.

An autistic life is a terrible thing to waste.  

Song in my head as the conference wound up:

Chumbawamba—Tubthumping  “I get knocked down, but I get up again….” still channeling that 80s vibe.

The last word goes to Simon Baron-Cohen again, from the 11 a.m. press conference on opening day.  He urged all attendees to “keep research healthy and growing.” 

 I would ask:  How do you do that unless you keep autistics healthy and growing? When your ‘subjects’ have a life expectancy of 54? Oops, past my expiry date.

On the positive side, I gave out about 40 of my business cards, made some excellent contacts, and have already heard back from kind researchers who sent posters and additional information I requested.

My roommate tweeted on the last morning, as we dragged ourselves out of bed to the Special Interest Group on Sexuality (which was a highlight, and at which I served leftover wine….),

“To the #ActuallyAutistic advocates at #INSAR2019. You have endured 4 days of sensory, social & information overload. Witnessed countless posters and panels focusing on how to fix you. I couldn’t even imagine. You are #resilient. You are #appreciated. You are #valued. Thank you.”

Poster room ideas—save reams of paper and make it more accessible.  Show them via video in each successive time slot, so they can be viewed from the sensory room.  Have appointment slots with individual research teams so you can ask questions about a poster.  They could try ten-minute slots spread over the two-hour period, or even beyond.

Alternately showcase fewer at a time, like a museum display with benches down the middle to allow browsing.   And put boxes of ear plugs EVERYWHERE.  Trying to view posters should not be an Olympic endurance sport.  There are so many good ones I missed.

Hands down, the best presentation I heard was Jon Adams’ from Flow Observatorium.

On the last morning, D tweeted rather sleepily the following astute observation:

Just as some theorise that there are many #Autisms I believe there are many #INSARs. Each person has their own experience and interactions with the conference.

D had to leave early, before the last Panel Sessions May 4, which turned out to have the most relevance to me as a female autistic.  Unfortunately two were running at the same time, so I ran between them.  #249 on Autism, Sexuality and Romance:  From a Better Understanding to Attuned Support chaired by Jeroen Dewinter of the Netherlands; and #251—Clinical Presentation of ASD and Access to Care Among Girls chaired by Allison Ratto of Washington DC.  That meant I missed Dr. Mark Stokes of Australia, who I found out later is working in many areas including Menopause, my current research interest.

I think it telling that such important panels were scheduled the last afternoon, and were pitted against one another…..

Allison’s slides (see below) perfectly summed up the conference for me.  She works closely with Julia Bascom of ASAN.  AWN was represented by VP Corina Lynn Becker in the absence of Sharon daVanport.  Unfortunately, I missed the discussion because I dashed back to 249 to hear Anne Kirby of Utah on Autistics experience of Sex (solo and partnered.)  And I lost my Vibes earbuds in the washroom.  I was really in overload!

Again, the researchers were insightful and considerate; it is the philosophy and format of the event that need to change.  I plan to attend every two or three years and see if the focus changes for the better.  Boston in 2021 anyone?

Allison Ratto slide from Day 4, Talk #251 on care of girls