Showing posts with label social model of disability. Show all posts
Showing posts with label social model of disability. Show all posts
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INSAR 2019: Yet Useful Research and Autistic Representation Persisted

Shannon Rosa
Senior Editor

The TPGA team attends INSAR, the annual meeting of the International Society for Autism Research, annually and has done so for eight years. We participate as journalists covering important autism research for our community, and also from our combined personal investments as parents of high-support autistic teens, autistic self-advocates, and autism professionals. 

I found INSAR 2019 to be the most progressive annual INSAR meeting since I first started attending in 2011, going by TPGA's priorities of spotlighting research addressing the health and well being of existing autistic people, centering improved autistic quality of life as an optimal outcome, and increasing and acknowledging participation of autistic people themselves. I also appreciate seeing an increasing emphasis on autistic people and their families' day-to-day under-recognized concerns, including co-occurring conditions like GI issues and sleep disturbances, practical considerations of transitions to adulthood, suicidality and other mental health matters, physical activity, and tailoring supports and outreach for low income and/or racially diverse communities.

Most researchers we talked with and listened to seemed to understand that, in undertaking autism research, they are de facto advocates for the underserved and actively marginalized autistic and autism communities. I appreciate their work, as well as their solidarity with INSAR's autistic attendees, and was not alone:

Yet the things I was pleased about at the conference happened despite, not because of, the INSAR powers-that-be. While increasing numbers of conference researchers and presenters recognize that autistic people and their families need all the autism research we need, this year the INSAR board announced it was trying to "restore balance," and de-center non-biomedical autism research.

Why? Politics. We were told the reason was lobbying by SFARI, the Simons Foundation Autism Research Initiative. SFARI prefers the meeting as originally conceived back in 2001: neuroscience-based, and in keeping with SFARI's traditional medical model, deficit-defined approach to autism. While Simons efforts don't dominate INSAR funding, the foundation is a major source of autism research funding. And, like many well-funded-and-connected entities, flexing their influence generally gets results.

Even when those results doesn’t make sense: Excluding or minimizing non-biomedical research at INSAR would unnecessarily limit good and useful autism research, because there aren't any other international autism research conferences of note. Plus, the Society for Neuroscience conference is still happening every year, and continues to have autism content. There's no rational reason to stop making space for as much diversity in research and researchers as annual INSAR conferences can shoehorn in, and, frankly, this "change is bad" approach seems like an ironically rigid and maladaptive move for an organization bent on eliminating or "treating" such traits in the autistic population.

Simons also funds Spectrum Magazine*, which covers autism research, and, in leading up to the INSAR conference, published two pieces titularly about "autism wars" and "tension," but which were really about why a lot of medical model approach people don't want to listen to or respect rights-based autistic advocacy. It seems disingenuous, or at least ill-informed, to highlight and promote arguments that autistic self-advocates—generally known for their dedication to social justice without regard for personal cost (a stance research bears out)—aren't trying to serve the greater good of their entire community. Now, as Spectrum is a Simons effort, I am aware that it is not realistic to expect the magazine to cover autism research in a non-deficit model way. And I certainly don’t mean to imply that the phalanx of Spectrum journalists who cover the annual INSAR meetings are bad people, but rather that they operate according to their mission, just as we do, and that when they get things right by autistic people, that tends to be the exception rather than the rule.

While part of the problem in medical model autism researchers' and journalists' deficits-only lens is a tendency to see autistic people as subjects rather than human beings with opinions and rights, as Sara Luterman noted,
…another issue may be non-autistic people's own communication deficits. We talked with Dr. Catherine Crompton, whose research on Information Transfer between Autistic and Neurotypical People brings quantification to Dr. Damian Milton’s Double Empathy Problem. Her study concluded that, while autistic people communicate well with each other, and non-autistics synch well with non-autistics, there are significant gaps in trying to communicate information between autistic people and non-autistic people. (We interviewed Dr. Crompton during the conference, so stay tuned for our report.)

It may be that this same communication gap was behind attempts to pit researchers and autistic people against each other during the conference:
Which is odd considering that many attending researchers are themselves autistic, and already often discriminated against, including having their expertise and experience met with skepticism—as James Cusack noted:
INSAR needs to stop pushing back against an increased autistic groundswell, if for no other reason that, as INSAR board member and autistic advocate John Elder Robison noted, five percent of registered INSAR 2019 attendees were autistic self-advocates and/or researchers, and/or journalists. Five percent percent of 2200 people is, well, kind of a lot, and if autistic attendance keeps increasing without officially sanctioned, genuine inclusion, INSAR is going to find itself in a pickle.

Autistic researcher Dr. Jac den Houting with their 
poster on participatory research in Australia. 
[image: A white person with dark pulled-back hair and lip
piercings, next to a study results poster.]
Self-advocate Louise Tardif, presenting a group poster on 
Services for Family-Dependent Adults. Photo © Jon Adams.
[image: A white person with long straight brown hair
with bangs, standing in front of a study results poster.]
And Mr. Robison's five percent estimate doesn’t include the autistic researchers who aren’t officially "out," from either explicit or implicit discouragement from their teams and institutions about disclosing their neurostatus:
So, all, please check out these Autism Acceptance guidelines from The Autistic Self Advocacy Network, and share them liberally with your peers, teams, and organizations.

[*sound of needle being dragged across a record*]

As for the conference programming itself, that was an exercise in sheer FOMO terror. (If you want to experience delayed overwhelm, you can still look through the conference program and abstract book [PDF]). We tried to hit as many sessions as we could, but still missed Sarah Hampton on Autistic Mothers’ Wellbeing during Pregnancy and the Postnatal Period; Dr. Lisa Croen on SSRIs and pregnancy (no link to autism, people!); Dr. Josephine Blagrave, Dr. Emily Bremer, and Dr. Andrew Colombo-Dougovito on caveats, barriers, and best practices for physical activity for autistic people—and even sometimes missed crucial nuggets in panels we did attend, e.g.:

Here's what we did attend: Dr. Sarah Cassidy and group's excellent pre-conference session on autism and mental health (we live tweeted much of it, but it was also recorded in its entirety, so hopefully we will be able to share more about it soon). We were impressed by everything we saw, including Dr. Christina Nicolaidis's presentation of Dora Raymaker's work on autistic burnout, and Dr. Rachel Moseley, whose work on self-injury in autistic people without intellectual disability is sobering—so definitely watch out for our forthcoming interview with Dr. Moseley.

Dr. Rachel Moseley during her presentation on autism and self-injury
[image: White woman with glasses and long dark hair, speaking at a session,
and pointing at a projected slide about reasons autistic people self-injure.]
The INSAR press conference, aside from announcements about wanting the meeting to be a redo of its biomedical sciences origin story, contained exciting and useful research fom Dr. Olivia Veatch on sleep disturbances (not sleeping is bad for all humans, and so, yeah, it's bad for autistic people too), and Dr. Ruth Ann Luna on gut and microbiome issues (we are finally seeing research about co-occurring conditions as separate health issues with autistic-specific expressions, rather than as "treatable" symptoms of autism. This is a relief). We interviewed Dr. Luna, and that article is coming soon too.

One of the highlights of the conference for us was AutINSAR, a conversation between autism researchers and/or autistic community members, both in person and on Twitter, which we co-hosted for the third year in a row. AutINSAR was rollicking good fun with excellent points made by all, and so heavily attended IRL that people had to sit on the floor around the perimeter of the room. It takes a while to compile Twitter chats into usable formats, but rest assured a full summary is coming.

The IRL #AutINSAR crew
Back row: Emily and Manuel Casanova, Jon Adams, Bret Heasman, Sue Fletcher-Watson, Anne Fritz,
Cat Hughes, Aaron Bouma, Bethan Davies, Corina Becker, Stephanie Vreeland, and Steven Kapp
Center row: Sara Luterman, Christina Nicolaidis, Lorcan Kenny, Christine Jenkins,
and Louise Tardif. Front: TPGA editors Shannon Rosa & Carol Greenburg
[image: Crowd of neurodivergent people posing in the corner of the INSAR press room.]

John Elder Robison, reigning over the Stakeholder's luncheon
[image: A tall white man with short silver hair and glasses, 
speaking at a podium, wearing a red paper crown.]
The annual Stakeholder's luncheon was also useful. John Elder Robison was emcee, reminding us about shared community goals and the productive things that can happen when people work together. There were tables and tables of autistic people in proud solidarity, along with parents and other family members (we had at least two siblings at our table). I was glad some high-support individuals were there too, and was not the only person who appreciated some of the autistic attendees' verbal stims, as in my case they reminded me of my son, whom I hadn't seen for a few days. Of the speakers, the most bracing was Dr. Vikram Patel (who also gave a keynote), who reminded us that on a global scale most autistic people have no supports whatsoever.

One table of neurodiverse good company at the INSAR Stakeholder's luncheon.
[image: Nine people of diverse races, autism affiliations, and neurologies:
Back row: Carol Greenburg, Kyle DeCoste, Dr. Deb Karhson, Fernanda Castellon,
Sara Luterman, and Stephanie Vreeland.
Front row: Corina Becker, Elliott Keenan, and Dr. Steven Kapp.]
Dr. Patel's message was a reminder of why we do what we do at TPGA: We aim to generate as much useful and freely available autism information as we can, and get it to people who need it, regardless of what other supports they may have. And even though our resources are still mostly in English, we are open to translating and adapting them for other communities. Ask us!

During the main conference, we attended and live-tweeted several sessions: Co-Morbidities (co-occurring conditions like anxiety, depression, and executive functioning difficulties), Health and Well-Being in Transition-Age Youth and Adults, and Cultural and Structural Factors Underlying Diagnostic and Service Disparities Among Racial/Ethnic Minority Children in the U.S.

We also attended and published highlights on Learning How to Prevent Suicide in Partnership with Autistic People and Their Allies, which featured a pointed and moving talk from autistic artist Jon Adams. The Special Interest Group (SIG) on Gender, Sexuality, and Romantic Relationships addressed real-world concerns, and I particularly welcomed the section on supporting people with intellectual disabilities. We also appreciated the SIG on Autism and Related Disorders in the Context of Humanitarian Emergencies, which included the reminder that we cannot merely translate autism materials; we have to make them culturally-specific and -informed.

All the very practical but non-biomedical sessions we attended were popular, and some, like the Co-Morbidities sessions, had attendees lined up against the walls and sitting on the floor despite the room having hundreds of seats. This means attendees are voting with their feet (and butts). I'd like to think the INSAR board can't ignore how much INSAR attendees want to see quality of life-attuned research.

I also hope the INSAR board takes note that, as Dr. Sue Fletcher-Watson reported, dismissing autistic accommodations at the meeting itself is uncool. Last year the conference tried to promote flappause, AKA flapping one's hands instead of applause, so as not to assault those with auditory sensitivities (i.e., a large section of the autistic population). This year year the board backed off due to non-autistic pressures, and said flappause was a personal choice. I think this was an [expletive] move at an autism conference. Autistic attendees weren't pleased, and flappause continued to happen among increasingly sheepish applause:

We need to increase autistic accommodation at INSAR, not reduce it. Having a sensory/quiet room is a good start, but the poster sessions were still sensory hell, and many autistic attendees publicly reported having a tough time navigating the conference in general. And we know the INSAR board is aware of these issues, as board member John Elder Robison is publicly soliciting, listening to, and taking autistic concerns seriously.
So those are my takeaways from INSAR 2019: Oodles of solid content and autistic representation, despite conference organizers not entirely in touch with the most ethical motivation for autism research: to figure out best practices for helping and supporting the autistic people and their families who are already here, already struggling, and who deserve the best quality of life possible. Hopefully the INSAR board will start listening, with results reflected in next year's 2020 conference in Seattle.

We're interested to hear your take on INSAR 2019.

----

*Disclosure: Editors Shannon Rosa and Carol Greenburg have written for Spectrum Magazine.
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What the Neurodiversity Movement Does—And Doesn't—Offer

Emily Paige Ballou 
chavisory.wordpress.com

Autistic folk of diverse abilities somehow enjoying each other's company
[image: Three white autistic people. Two adults: Sara Luterman and John Marble,
and one teen, Leo Rosa, hanging out in front of a Hayes Valley coffee shop.]
It has long been a commonplace accusation against the neurodiversity movement that those of us among the autistic community who are neurodiversity supporters comprise the “very high-functioning,” and that while it’s fine for us to say that what we really need is acceptance and accommodation—we simply don’t understand the challenges of the truly disabled.

This accusation is in stark contradiction to the fact that, from its inception, not only did the neurodiversity movement’s values include the most significantly disabled, but that those individuals themselves were among our earliest pioneers. And that going back even further, the self-advocacy movement didn’t originate with the autistic community at all, but rather largely was led by institutionalized people with intellectual and other developmental disabilities.
We’ve also been having this discussion about neurodiversity, along these same basic parameters, for a long time now—with both sides firing back many of the same basic points:
  • Neurodiversity denialists: Neurodiversity advocates are fundamentally different from, and cannot speak for, the "severely affected," e.g., our autistic children who can’t communicate, self-injure, are aggressive, have epilepsy, have GI troubles, etc.
  • Neurodiversity proponents: You cannot actually know the particulars of another person’s disability by how well they can communicate on the internet. Many of us actually experience the same challenges neurodiversity antagonists cite as only afflicting the "truly disabled." We’re not trying to speak for everybody, we’re standing up for everyone’s right to speak for themselves.
We’re going on circles, and recently, I think I might have gotten a clue as to why.

Lately, on Twitter and elsewhere, I’ve witnessed this basic argument take on a new phrasing:  That we have “nothing to offer” autistic people with more significant support needs.

I was confused at first, thinking of many of the initiatives and developments undertaken by members of the neurodiversity and broader disability rights movements which absolutely apply to all of us, from the successful fight for the $10.10 minimum wage on federal contracts to include those employing disabled people in sheltered workshops, to advances in recognition of the rights of all disabled people to live in our communities with support and not in institutions, increased recognition of the right of all disabled students to meaningful inclusion, literacy instruction, and access to AAC.

I also think about how the Autistic Self Advocacy Network (ASAN)—which is entirely staffed by autistic people—has released toolkits written in plain, accessible language on subjects like political participation, voting, advocacy, safety in the community, abuse, and self-advocacy in sexual and romantic relationships. Their work this past year has been instrumental to preserving the Affordable Care Act, and the provisions of Medicaid that allow many autistic and disabled people to receive services and live at home, rather than being forced into institutions, and also in the fight against discrimination in organ transplant decisions on the basis of disability.

I think about how, when parents and families persistently report that they need better respite services, one of the major aspects of the neurodiversity movement’s long-running protest of Autism Speaks is that for all the revenue it takes in from community-based fundraising, it returns extremely little in the form of tangible support to families and autistic people ourselves.

I think about how Neurodiversity advocates plead with autism researchers for more and better research into co-occurring conditions and assisted communication.

These are all issues that absolutely and intimately affect the lives of autistic people who are significantly disabled, as well as those who are multiply disabled. Presuming that neurodiversity critics aren’t simply ignorant of these efforts (though that’s certainly possible), why do so many remain insistent that neurodiversity doesn’t have anything to offer their disabled loved ones?

I do my level best not to make presumptions about other people’s beliefs or mental states, but as I try to unravel what could possibly be meant by this, what I am beginning to suspect people mean when they say that neurodiversity has nothing to offer the severely disabled, or people like their child, is that we cannot make their loved one non-disabled.

To a large extent, they’re right. We can’t do that.

Or, we certainly can’t do it alone. The social model of disability, basically, says that disabled people are disabled not by our physical or sensory impairments, but by the failure of society to accommodate people with those conditions in the same ways as it does people without them. When businesses don’t have ramps, wheelchair users are disabled by lack of accommodation and not just inevitably by their physical condition. It is a massively important concept that underlies a lot of the recognition of disabled people as equally deserving of public access as non-disabled people.

And to be honest, I’ve always found it a little bit incomplete and unsatisfying.

There are aspects of being autistic, for me, that I doubt it’s possible for society to accommodate perfectly. That, even if society did a substantially better job at accommodating autistic people, being autistic would still markedly affect how I live, and will always leave me expending more effort than the non-autistic people around me just to get by. These experiences aren’t superficial, and they are never going away.

I say this not to undermine the importance of the social model to the thinking of the disability rights movement, but to say that I think I understand at least some of what neurodiversity skeptics are trying to convey, when they counter that accommodation doesn’t just solve everything.

I will always be disabled. I don’t see that not being the case within my lifetime. There are, without a doubt, important roles for government, education, technology, and medicine to play in mitigating disability, but I will always be disabled in ways that even perfect acceptance and accommodation probably cannot erase.

So, neurodiversity critics need to understand that we who support neurodiversity aren’t confused about the fact of your child or loved one being really, truly disabled. We know there are non-speaking autistic people, epileptic autistic people, self-injuring autistic people. We know this because many of us are non-speaking, epileptic, and self-injuring autistic people.

Those of us who can communicate on the Internet believe that what we are saying about our own needs applies to the rights and needs of other disabled people, including the children and loved ones of neurodiversity detractors. So when we talk about the rights, acceptance, and accommodation that autistic people deserve, we are not the ones who think those things are only for people like us. 

Those of you who say that your children or siblings would never be able to advocate in certain ways: Maybe. But, thing is, we don’t believe that those ways are the only kinds of advocacy that matter or count.
“When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he’s done day after day, this is self-advocacy ... When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she’s been imprisoned and the people who keep her there, this is self-advocacy ... When people generally said to be incapable of communication find ways of making clear what they do and don’t want through means other than words, this is self-advocacy,” -Mel Baggs in “The Meaning of Self-Advocacy,” from the anthology Loud Hands:  Autistic People Speaking
When we say “Everyone can self-advocate,” we don’t mean “All of us can speak in conventional and highly formalized ways in settings that favor a very narrow construction of political advocacy” (although if those settings were more prepared to offer accommodation for significant communication differences, it would certainly help). And we don’t believe that conventional communication should be the prerequisite for your loved one having their communication honored.

Neurodiversity critics say, "our children will never write or speak like you 'high functioning' autistics do." Maybe not. But then again, at least one person who I actually know has, within the space of a few years, gone from being considered incapable of meaningful communication, to authoring her own blog and co-directing a documentary film, after she was provided with the resources necessary for her to do so. So we neurodiversity supporters are not the ones who believe that verbal eloquence is the only form of expression with meaning or value. Your child might never testify in front of Congress, but we aren’t the ones who believe that that makes the rest of their communication unimportant.

You say your children will never go to Harvard or William and Mary. Maybe not, but an elite private college education isn’t the only viable path to a rewarding life (and besides, the first ever non-speaking autistic student just graduated from Oberlin College).

We neurodiversity supporters believe that what someone can do matters. We believe that the way someone can communicate matters.

We also reject the equation that accepting autism and disability means giving up. Research consistently shows that autism acceptance leads to better mental health for parents as well as autistic people themselves. Evidence is mounting that acceptance and accommodation provide a more reliable path to increased capability and independence than fighting autism or disability does. Acceptance isn’t a cure, but it does facilitate recognition and support of abilities that often go unrecognized and under-valued. We are better off when not only our disabilities, but our real abilities, are recognized.

It follows that autism—yes, even involving a significant degree of disability—should not be a reason why we are kept from accessing communication, education, employment, competent medical care, the right to make our own decisions and live on our own terms, friendship, romantic relationships and sexuality, freedom from abuse, or the basic premise of our lives being acceptable.

There is already a history of people trying to eliminate neurodevelopmentally disabled people. It’s not a good history. We can’t make anyone non-disabled—that isn’t what neurodiversity adovcates are offering—but we also don’t believe that being non-disabled is the only right way to be a person.

If you are a neurodiversity skeptic, maybe it looks like, from your end, that we who champion neurodiversity have the luxury of declaring “We’re okay the way we are; we’re valuable to humanity and people like us should exist” to the extent that we don’t seem disabled in the same ways that your loved ones are disabled. Their disabilities are such that we can’t take them away, nor can we make them into people more like us, whatever you imagine our abilities to be.

If I’m even a little bit right, if you recognize yourself at all in this conjecture, then what I want to ask of you is this:

Try to separate autism, or disability, in your mind, from the sense of impossibility of having lives that are rich and complete. From assumptions that people disabled in certain ways only get to have a certain kind of life. Whatever autism looks like for the person you love, disrupt the logic that says that only if they were not disabled in those ways, could they have something of value to contribute, or be entitled to lives of autonomy and acceptance.

You are right; we cannot make your autistic loved one non-disabled. But we can help make a future that has room for people like your child in it, complete with the rights, the access, and the supports they need to live their fullest life. We think that that is doable. We think that that is right.

Yes, autistic lives are different. Yes, they are often hard. No, they will not look like the lives of non-disabled people.

We just don’t think that that makes disabled lives wrong.
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