Thursday, December 31, 2015

Ableism FUBARs and Constructive Recoveries

Shannon Des Roches Rosa, with Carol Greenburg, Patricia George, and Christine Langager

The disability and empowerment-themed website The Mighty recently published a post called Introducing: Meltdown Bingo, and sparked an actual Internet meltdown. In the post (since retracted by The Mighty's editors), a parent used the popular Bingo Card meme to detail challenging aspects of their autistic child’s meltdowns.

The online backlash from autistic and disability activists was understandably swift and strong, underpinned by a history of those activists’ dissatisfaction with The Mighty coupled with dismay over yet another hijacking of autistic children's most vulnerable and misunderstood moments justified as parenting “honesty.”

But here’s the thing most backlash commentary missed or ignored: The mother who wrote the post is autistic. Anyone who clicked on the author bio for the original Meltdown Bingo post would have read the following: “Christine is an adult-diagnosed autistic mother to autistic Cameron, 8.” Also missing from the story: The author and her son wrote the piece together, in their family’s personal style of getting through tough times using dry humor.

Being autistic, and even co-authoring the post with her son doesn't excuse publishing a post like Meltdown Bingo -- but the author never, ever meant for her post to be taken literally. She was a first-time autistic author who didn’t realize that sarcasm, unless labeled outright as such, isn’t always recognized on the Internet.

The Mighty should have known, though. They have professional editorial staff, who are sitting on many months of direct feedback from disability, autistic, and neurodiversity advocates, who constantly ask them to center rather than exploit the perspectives of people with disabilities. The editors should have been aware enough to warn the author that Meltdown Bingo could be problematic in a large, autism-oriented arena. They should have known it was a bad decision to publish Meltdown Bingo.

“Bad” from a humanitarian perspective, that is. Possibly quite good for page views. And many of the parents who read Meltdown Bingo believed The Mighty was saying that it’s OK for loving parents to talk publicly and even humorously about their disabled kids’ personal crises. Many of those parents thought, and commented, that Meltdown Bingo was in fact totally accurate and awesome.

In contrast, autistic and disability advocates responded with justified, social media-enhanced outrage, because taking Meltdown Bingo seriously is like laughing at someone for having a grand mal seizure. Meltdowns can be terrifying, as Shain Neumeier explains in Meltdown Bingo: Autistic Edition. Advocates also reinforced the message that The Mighty needs to change its approach to editorial representation, and pay.

The Mighty reacted to the backlash by taking the post down, and offering an apology – but one that, while reaching out to the community for constructive feedback, somehow omits the author's comments and own apology. Though The Mighty's apology did inspire Alice Wong to start the excellent #CrippingTheMighty Twitter campaign, "to highlight great disabled writers and speak to the problematic aspects of the media's representation of disability," which I hope the editors are reading. In addition, many disability advocates felt the apology was not enough. As the Mighty’s editors are now reaching out to community leaders individually, I hope they listen to them.

The author, upon seeing the backlash, and realizing only too late that her small-scale humor had been stripped of context and turned into a large scale digital Molotov cocktail, attempted to apologize. And this is where matters get even more problematic. Because, from what I’ve observed, her apology was largely ignored, dismissed, or disappeared. This is one version of her apology:

“I am human. I am an Autistic human. I made a mistake that I am very remorseful for. Please, please remember that. Please remember that I am an actual person when (general) you go around the Internet behind your keyboards making blog posts, and petitions about how horrible of a person I am. How I don't deserve to have children. How I would probably kill my child. How I am lying about being Autistic. How I don't deserve to exist. I am completely shattered by this experience for so many reasons.

“I am sorry.  
“I wanted to reiterate that I have never, nor will I ever laugh at my son (or any other person with disabilities), but was very much laughing with him. Our family often uses humor as a coping mechanism, and sometimes use self-deprecating humor. I'm sorry our intent was misunderstood. I'm sorry for causing hurt to anyone. Truly.


"
So. Where do we go from here?

When people -- disabled or not -- make mistakes that hurt people with disabilities – do we actually want those people to learn from their mistakes so they don’t make them again? I hope we want them to learn. People who make ableist mistakes need to be encouraged to learn. I don’t expect every activist to spill their own spoons by holding the mistake-makers’ hands while they learn. But people also need to pause before going on virtual decapitation sprees with regards to those who err, if the errors are parts of salvageable situations.

We also need those who are doing the criticizing to attempt at least some due diligence about authors’ neurologies -- if those neurologies are in question -- instead of making assumptions. We need those who boost the criticism (and I include myself here; I did not realize the author was autistic until alerted by Patricia George) to also double-check before they amplify, lest they compound hurt in the name of preventing it.

Being autistic does not make one exempt from criticism or ableism, just as it does not make a person automatically correct regarding all issues autism- and disability-related. But when people speaking out against the Meltdown Bingo post realized its author was autistic, it should have given them pause. And it certainly should not have led to claims of the author being an autistic Uncle Tom, or (chillingly) claims she was not really autistic. 



Discovering the author's neurostatus should have led to a conversation with the author. She is part of the autistic community. She should have been given the benefit of the doubt, should have been contacted, should have been asked if she understood why Meltdown Bingo was problematic. And when it became clear that she knew she had made a mistake, had learned from her mistake, and was sorry, her neurostatus and apology should have been an addendum to every article on the topic.

We need to do better by our autistic parents, and their unique Venn intersection. Being autistic isolates a person from non-autistic parents in ways that those parents, and child-free autistic people, need to consider more carefully. Autistic parents too often get dismissed by both groups, when, ironically, no one knows better what it is like to be part of both communities.

And we need to remember that autism and disability advocacy is really damn hard, and kind of a minefield. We need to do better when detonations occur, we need to be able to talk to each other afterward even if it's difficult, even if it means making ourselves uncomfortable. Because, when it comes to individuals, there are so many good people in the disability, autistic, and autism communities doing good work. There are also a lot of awful people who sound superficially similar to the good people -- and we won't know who they are, who really doesn't mean well, and who just doesn't get it, unless we talk to them before we talk about them.

Thursday, December 24, 2015

Free Workshop in San Francisco: When Autistic Children Are Aggressive or Self-Injurious

San Francisco Bay Area Locals: Please come to a free workshop at Support for Families of Children With Disabilities, in San Francisco, on Saturday, January 9th.

When Autistic Children Are Aggressive or Self-Injurious: Best Support Practices

What's wrong buddy
Photo © Akuiliu, on Flickr
[Image: Upset-looking East Asian child]
Why do some autistic children and teens become self-injurious or aggressive? How can parents and caregivers help the kids in their care get through meltdowns safely, protect the kids themselves as well as family members, and anticipate and avoid future incidents?

Come hear from parents, professionals, and autistic people themselves about best practices for understanding and supporting autistic people during these kinds of crises. There will be a Q&A after the presentations.

Speakers include:
  • Dr. Clarissa Kripke from UCSF, talking about overlooked medical and health triggers, as well as meltdown support strategies.
  • Brent White and Lindsey Anderson from Berkeley's Ala Costa Adult Transition Program, talking about support strategies for outside the home and classroom, as well as autistic insights on self-injurious behaviors and what, as children, they would have wanted their parents to know.
  • The panel will be moderated by Shannon Des Roches Rosa of Thinking Person's Guide to Autism, who is the parent of a high-support autistic teen.
Details:
  • Date: Saturday, January 9th, 8:30 - 12:30 
  • Time: 8:30am: check-in, light breakfast served
    9am: workshop begins
  • Location: Support for Families
    1663 Mission Street
    7th Floor
    San Francisco, CA 94103
  • Parking: On street (metered)
  • BART: 16th Street Mission (walk 3 blocks north to 13th)   
  • Bus/Streetcar: 14 Mission and 49 Van Ness, and Van Ness Metro Station
Please register by calling 415-920-5040, or emailing info@supportforfamilies.org with your contact information.

Thursday, November 19, 2015

Re: Autistic boy, 11, kills himself

Kit Mead
kpaginatedthoughts.blogspot.com

----

Re: Autistic boy, 11, kills himself

I phrase it that way. I don't phrase it the way the article did. Blaming the autism and ADHD for suicide. This was a boy who befriended a locust in a tree. His mother said he felt like the adults at his school didn't care and could not make connections in his class. Had a gift with animals.

***

Isolated and miserable, I managed to find refuge in certain places. The art room, where the art teacher encouraged me to explore with sharpies and gel pens and acrylic paints. The debate room. My 10th grade English teacher's classroom. The scene shop, where I would frenetically sweep and clean the entire area after school.

Unlike Shane Laycock, I had supportive adults in my high school. I don't know how, considering the story told by so many of us of being shunned by even the adults who are supposed to care. I don't know what would have happened without them.

***

It was never autism's fault.

In middle school, I arrived with a set of liberal opinions from one of my parental units at a private school and set the school upside down. At a certain point, curiosity about the new student turned into vitriol. It was never autism's fault. The way they treated me created a small, scared, desperate teenager by the time I hit high school. Failure to understand difference is at fault.

***

I spent most of my time in trees, befriending neighborhood cats, playing with my gerbils, reading, or lost in my head. I once climbed a 40-foot-tree. I lived in fantasy worlds.

Biking is still my outlet, speeding up and down hills, feeling the wind in my face.

***

He said he felt like the adults at his school they didn't care. This is the experience of so many like us, shoved aside and written off and turned away. Not me (in terms of adults), but so many of us.

How can we make sure that people start to care? That people care about people like us? It was never autism's fault. It is a society that teaches difference is failure, that autism is tragedy, perpetuating the constant isolation of autistic people and other people with disabilities.

And when talking about this...

When talking about this...

Talk about a boy who walked barefoot and befriended locusts...

Talk about a society which chose to isolate him, talk about a society that failed to accept him. Do not blame him or disability.

Yes, in a perfect, non-ableist world, there would still be forms of disability. Certain things are disabling. But to turn away from the role society plays in perpetuating isolation would be negligence.

----

This post was previously published at kpaginatedthoughts.blogspot.com.

Monday, November 16, 2015

Why The New 1 in 45 Autism Numbers Shouldn't Surprise You

Shannon Des Roches Rosa
www.thinkingautismguide.com

We've said it before, we'll say it again: There Is No Autism Epidemic. Not even after US estimates for autism prevalence recently rose to 1 in 45.

How do we know there's no autism epidemic? Two reasons:
  1. A comprehensive survey of autism prevalence in Korea estimated a rate of 1 in 39, as reported in 2011. There's no reason US rates should be much different, so the new numbers are likely portraying reality more accurately, rather than indicating reality is changing.
  2. Researchers have been saying for years that autism's prevalence has mostly risen in response to changes in diagnostic criteria, rather than due to environmental triggers or other causation ideas.
The role of changing diagnostic criteria in rising autism rates is particularly relevant right now, given that theme's prominence in Steve Silberman's award-winning, current bestseller NeuroTribes. Silberman devotes a sizable section of the book to describing how British researcher Lorna Wing helped revamp autism diagnostic criteria in the 1980s. When Dr. Wing widened those criteria to include the full spectrum of autistic experiences, she fully expected autism prevalence to rise dramatically as a reuslt. As Silberman writes in a related article at BBC Future:
"In fact, the primary contributor to the dramatic spike in autism prevalence in recent decades is the fact that a broad range of children, teenagers, and adults on the spectrum are able to get diagnosed at all. Until the 1980s, there was no “autism spectrum” as a diagnostic category."
So what lies behind the current uptick in estimated US autism prevalence? As science writer Emily Willingham reports, it has to do with a tweak in the way interviewers questioned parents about their children. That's it. Once again, there's a simple explanation, rather than a concealed smoking gun. Per Willingham:
"Not even the most die-hard causation theorist could argue that in a single year or handful of years, something environmental, like vaccines, caused a near-doubling of autism prevalence in children ages 3 to 17 years."
Autism prevalence rates will hopefully continue to rise, because -- ideally -- higher rates would indicate better estimates within populations considered chronically underdiagnosed: girls, children of color, and children from low socioeconomic backgrounds. (While autistic adults are also underdiagnosed for a variety of reasons, the 1 in 45 rate is from a parent survey about autistic children.)

All this evidence refuting an autism "epidemic" is (or should be) common knowledge, to those who follow mainstream autism research even casually. But that hasn't stopped some people and organizations from publicly complaining that these numbers are irrefutable proof of a "catastrophe."

A charitable perspective on such denialism is that the doomsayers in question are concerned about the increase in actual numbers of autistic kids and adults who need and aren't (or won't be) getting enough support, due to population increase combined with prevalence, and divided by insufficient funding. If their motives are indeed humanitarian, then I'd like to remind those folks that is it possible to lobby for needed funding and supports without worsening the negative public perception of the very people those organizations and their leaders are supposed to be championing.

As Silberman said to Terry Gross on NPR's Fresh Air, regarding the harm of an "epidemic" mindset and cure-focused approach to autism, and how that negative misinformation disproportionately affects how autism funding is directed:
"What I say is that at least some of that money should be redirected to things like helping autistic adults live more satisfying, healthier and safer lives, or helping families get the services they need or helping families get a quicker diagnosis for their kids."
Refuting the idea of an autism "epidemic" and fighting like hell to help get autistic people the supports they need and deserve shouldn't be mutually exclusive efforts. Now that you know what the new 1 in 45 numbers represent, please do speak up when anyone uses those new numbers for misguided or hurtful purposes.

----

[Edit: A previous version of this article attributed the 1 in 45 numbers to a CDC survey. They are in fact from a National Health Interview Survey (NHIS).]

Tuesday, October 27, 2015

When Parents Murder Disabled Children: What You Need To Know

Shannon Des Roches Rosa
www.Squidalicious.com

"Stress is involved in almost every incident of serious child abuse, but it should not be seen as a mitigating factor more than any other source of stress should be seen as a mitigating factor. By and large, parents of people with disabilities are able to take care of their children without trying to kill them." -Samantha Crane

Whenever a news story breaks about a parent killing (or trying to murder) a disabled child, reactions to the story are almost as disturbing as the story itself -- because media and blog accounts tend to empathize with the parents, not the child victims. In fact the children in these cases are almost universally depicted as trigger for their parents' acts, rather than human beings with feelings, friends, interests, and rights.

We need to change those conversations.

Changing Conversations: When Parents Murder Disabled Children
[image: white teen boy with dark curly hair sitting on a bench
in a walk-through aquarium tunnel]
Photo © Shannon Des Roches Rosa
I want us to be more careful and compassionate when we talk about parents harming their disabled children. I want us to remember who the real victims are. And if we find ourselves empathizing with those parents, I want us to think long and hard about why.

If you identify with a murderer rather than a murder victim, or if you become upset when people criticize parents who hurt or kill their disabled kids, then maybe it's time to think about how you found yourself in that dangerous mind space and start making changes to help you, your child, and your family.

It may be that you come from outside the autism and disability communities, have only heard negative media messages about how difficult parenting a child with a disability can be, have never encountered people who believe in your child just as much as they want to support you. If this is the case, your attitude is not entirely your fault. But you can find and surround yourself and your child with community that matters—offline, and on—and with people who want the best for both of you.

It may be you reject the idea of accepting your child as disabled, because you believe that mindset means giving up or being in denial. You may assume parents like me, who constantly speak up about acceptance and understanding either have "easy" kids or are lying about what our lives are really like. But that's not what acceptance means at all, as explained by Real Social Skills:
"Acceptance creates abilities. Acceptance makes it easier to be happy and to make good decisions. But acceptance does not solve everything, and it does not come with an obligation to love absolutely every aspect of being disabled."
It may be you can't stop worrying about what will happen to your child after you die. But most children—disabled, autistic, or not—will and do outlive their parents. Try to reassure yourself by learning about "the different paths a child with special needs can take after graduating from high school," and investigating what your family's long-term special needs legal planning options actually are.

It may be you are participating in a community that, while providing catharsis and emotional connections you haven't found elsewhere, is actually toxic, actually fosters insidious attitudes about parenting children with disabilities. If the parents you rely on for emotional support consider such murder attempts "altruistic filicide," or justified due to desperation, then it's time to cut ties. It might feel like severing a limb, but you need to prioritize your safety and that of your child by finding parents who will help get you through trauma and crisis, but would not "understand" if you harmed your child.

It may be you don't have the services or support you and your child need; you may even feel like you're living in a minefield. This is a very real, not-rare situation, and it's not limited to parents who refuse to understand or accommodate their child's disability. People with disabilities who require intensive supports deserve sufficient resources, and so do their families. When these services are minimal or unavailable, that is a large-scale failure on our society's part. However, insufficient resources don't explain or justify murder of disabled children, because such crimes—which are also, frighteningly, not rare—do not actually have lack of services in common. So please don't spread the dangerous message that if parents don't get enough services, they might kill their autistic or disabled child.

Instead, parents -- like me, like you -- need to hear, and believe, that it's not a failure or shameful to ask for help, and we need to feel safe about doing so. For our own sake, of course, and also because reaching out protects our kids as well as ourselves. I'm pretty sure disabled people who survived harrowing, abusive childhoods would much rather have been raised by supported and supportive parents. That is one of the reasons so many autistic and disabled adults offer their insights online—they want our children to have better lives than they did. As long as parents are respectful, those adults can be a crucial part of your supportive community.

Parents also need to hear that when parenting is truly beyond their ability to handle, they always have options, even if those options break their hearts. They can, like two of my own friends have, place children in group homes. As I wrote on BlogHer:
"We need to stop assuming that putting a child into another's care equals giving up on that child. We need to stop declaring that when people relinquish their children, wholly or partially [...], it is because the parents are selfish. We should consider that these parents may be giving away the part of their soul that will always envelop that child for the child's sake, not to make the parents' lives easier."
And if a parent truly doesn't know where to turn, they need to know they can call emergency services, like those compiled by autistic writer and parent Paula Durbin-Westby. That call may result in separation between parent and child—maybe even a permanent separation—but who wouldn't prefer a parent and child alive but living separately by court order, over a murdered child?

It always comes back to finding the right community, finding friends who want to help you get through those days. And then the next one. And then the next. Many parents who feel this way are online, like Ariane Zurcher, who wrote about her relief in finding the support her family needed, and remembering her days of feeling alone and frightened:
"There is so much we are learning and still have to learn, but we are no longer alone. We are surrounded by other parents, professionals, educators and, most importantly, people who share our daughter’s neurology, those who are Autistic and who continue to share their experiences with us so that we might better parent our Autistic daughter."
Like Ariane, we need to learn to be careful where we look for help. We need to look to people who value our kids as much as we do—who will have both our and our kids' backs during desperate times.
I often share the We Are Like Your Child checklist for Identifying Sources of Aggression. It explains, from the perspective of people who share my own child's disability and neurology, the many, many, many reasons—from communication needs unmet to medical conditions to sensory overload—that may underlie otherwise inexplicable violence.

I think we parents also need to be extra-cautious in how much we reveal, publicly, about our children's difficulties, because we don't want to give people who neither love nor understand our kids ammunition for devaluing our children's lives, nor do we want to send the message that disabled children do not have the same right to privacy as their non-disabled peers. We need to help others understand our kids, of course, but from the perspective of telling the world that they are deserving human beings, rather than crosses for us to bear and commiserate over. We need to protect our kids at their most vulnerable and difficult times—even if those are times when are at our most vulnerable, too.

So find your positive, supportive people. They're out there, in safe public and private online groups, and on mailing lists. Once you're part of those groups, you can connect with people who can help you process and problem solve on a smaller scale, whether through texting, Skype chats, weekly private vent sessions, therapy, or in wiping tears off each other's faces before they fall into our coffee or beers. It's even okay to lurk in forums, if you're not comfortable talking with other people just yet. Just be careful about what you make public about your family, and who you listen to. And remember that your community is out there, you just need to locate it. Your people are waiting for you.

 ----
A version of this post originally appeared at BlogHer.com. I'd like to thank the autistic author of the blog Real Social Skills for helping me shape the original post.

Monday, October 5, 2015

NeuroTribes and the Proper Use of 'Neurodiversity'

Shannon Des Roches Rosa
www.squidalicious.com


Steve Silberman's NeuroTribes is a large, densely packed book about autism's past, present, and future. I found myself overwhelmed by the amount of information contained in each individual paragraph, in considering how much research and synthesis it took to create those paragraphs -- and in knowing that NeuroTribes's information matters so much, while acknowledging my kind of brain can't possibly retain it all. 

It doesn't surprise me, then, when other people have trouble remembering every important point in NeuroTribes, because the book is an 500-page information tsunami. Due to those info overload risks, however, some of NeuroTribes's themes need to be repeated more than once or twice for people to get them right. 

One theme that needs more emphasis is NeuroTribes' clarification about neurodiversity: The term is not limited to autistic people who communicate independently, or indeed only to autistic people. 

Neurodiversity is the full range of human neurological experiences. That means you, your loved ones, and every other person on this planet is included in neurodiversity. And that means the term 'neurodiversity' is not only not a synonym for Asperger's syndrome, it is also not a synonym for all diagnosis-worthy brain wirings, be they bipolar, ADHD, dyslexia, clinical depression, OCD -- or, you know, autism. 

A Neurodiversity Symbol
source: Wikimedia Commons
[image: a rainbow-hued infinity symbol]
When you're referring to brains that need support and accommodation, then you're talking about neurodivergence, not merely neurodiversity. If you're talking about your own, or another's, individual differently-wired brain, then the relevant term is neurodivergent. (Nick Walker wrote a go-to terminology briefing on neurodiversity and related terms, and I recommend it to anyone compelled to write on the topic.)

It follows that the opposite of neurodivergent, which is 'neurotypical' or 'NT', also includes more than non-autistic people -- even though NT is sometimes used as shorthand by authors with definitive writings on neurodiversity. 

And that means that if you mean 'non-autistic,' you should say "non-autistic," and not "neurotypical," or "NT." (Another word for non-autistic is 'allistic,' and people I respect have good reasons for using allistic instead of non-autistic, but I like Mel Baggs's explanation as to why non-autistic is preferable.)

People also tend to mistakenly conflate the term 'neurodiversity' and the term 'neurodiversity movement.' According to Nick Walker, "The Neurodiversity Movement is a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent." So when people get pissy and write things like "neurodiversity is evil," they are not merely letting their ignorance flags fly on more than one frequency, they are not only being hateful -- they are also flat-out incorrect. (Quixotic self-appointed neurodiversity foes will get their own article, later.)

Back to NeuroTribes: Silberman mentions that the neurodiversity movement includes more than autistic people at least twice, once in the development of the very term 'neurodiversity,' based on the dynamics of InLv, an early autistic culture mailing list:
"People with dyslexia, ADHD, dyscalculia, and myriad other conditions (christened 'Cousins' in the early days of ANI [Autism Network International]) were also welcome to join the list. The collective ethos of InLv, said writer and list member Harvey Blume in the New York Times in 1997, was 'neurological pluralism.' "
And again in the introduction:
"One of the most promising developments since the publication of [Silberman's 2001 Wired article] “The Geek Syndrome” has been the emergence of the concept of neurodiversity: the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture, rather than mere checklists of deficits and dysfunctions."
I am glad Mr. Silberman wrote those two passages. I am highlighting them in the hope that more 'cousins' witnessing the positive press swirling around NeuroTribes and the concept of neurodiversity will understand the neurodiversity movement includes them, even if they're not autistic.

As for using the proper terminology, well, that can take practice and, for some (ahem) the occasional refresher -- even for those to whom the terms personally apply. In most cases, if your obvious goal is to be welcoming and inclusive, and to highlight the needs of neurodivergent and autistic people and/or amplify such voices, folks usually will cut you slack. Unless the specifics of their own personality or neurodivergent nature requires them to address the misuse of terminology first and foremost. And that's OK, and to be expected, if we're truly working towards understanding and accepting neurodivergence and neurodiversity.

Thursday, September 3, 2015

How We Autistics Got to Here: Reviewing Steve Silberman's NeuroTribes

Patricia George-Zwicker
www.persnicketypatricia.ca

[Image: White woman with dark hair
wearing black-rimmed glasses, and
intently reading the book NeuroTribes.]
When Shannon Rosa contacted me and asked if I'd be interested in doing a guest review for Steve Silberman's highly anticipated book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, I excitedly and nervously said yes! Like so many others, I've been anxiously awaiting what I hoped would be a game changer for the Autism community and Autistic people.

I've visited many book stores over the years in search of credible information or stories by people like me, especially stories and information from Autistic women. I often left disappointed and frustrated by the lack of history, compassion, accuracy and the almost non-existent input from actual Autistics like myself, finding instead a minefield of cures, desperation, martyr parents, male-dominated information and -- said with respect -- books about or by one of the most well known Autistics, Temple Grandin.

I needed to know more. I needed to know how we Autistics got to here: more defined than we've ever been, and yet so divided as a tribe. What is the basis for so many of the preconceived notions about Autism? Surely our place in history, and among humankind, is not as damaged, abnormal, disposable, cure-needing people. So why are we still so overwhelmingly seen that way? These are just a few things I hoped NeuroTribes would address.

Mr. Silberman has more than exceeded that hope. NeuroTribes is like finally having set of autism encyclopedias -- in my own language -- to reference. So, how did Silberman, who is not Autistic, come to write this book?

In 2000, Silberman joined the first ever “Geek Cruise” to Alaska, on assignment for Wired Magazine. There he met Larry Wall, creator of Perl -- an open source programming language used around the world. When he requested to interview Larry further, it led to an invitation to Larry's home, and the disclosure that Wall had an Autistic daughter. A few months later, Silberman was working on a story highlighting Judy Estrin, a highly regarded female technologist in Silicon Valley -- and found she had an Autistic niece. Then a coffee shop talk with a friend about whether the two "geek" families' autistic children were a coincidence led to an interesting comment from a fellow patron -- there's an Autism epidemic in Silicon Valley, the person said. Silberman's curiosity was so piqued that it first led to his 2001 Wired article The Geek Syndrome, and now to his current book NeuroTribes.

This hasn't been a rush-to-print project; the depth of research put into NeuroTribes is obvious. I feel I can assure those with whom I share the Autism Spectrum -- knowing many will question why a NeuroTypical person is writing our history -- that Mr. Silberman is on our side. Reading the book will really help you to understand why: I'm looking at it as a bridge that will lead to more and more of us Autistics being published, and listened to, as the authors of our history. It's a step forward, if we take it.

[Image: The cover of the book
NeuroTribes, by Steve Silberman.]
Mr. Silberman has uncovered many personal stories of those thought to be Autistic, going back to the end of the 18th century. He clearly shows what I've always known: we've always been here! I especially enjoyed the first chapter, and meeting Henry Cavendish, the "Wizard of Clapham Common" and also the "Father of Electrical Theory," who was one hundred years ahead of his time. As Cavendish lacked the need or desire for promoting himself, many people haven't gotten to know, till now, this truly interesting character. I know many may relate, and wish they could have spent some time in his amazing world. Reading about how he put together and carried out the Cavendish Experiment in an attempt to weigh the earth's density is inspiring. What a mind! I'd read a book just about just him! 



As I read on, I saw more and more pieces of my life reflected back through the richly described stories of others, like a young boy named Harro L., who was one of the four prototype cases in Hans Asperger's post graduate thesis. Or Patsy, a young girl  taken in by a woman named Gina Alstadt -- who was married to Bruno Bettelheim. (Mr. Silberman describes Bettleheim as “the psychoanalytic equivalent of Dr. Oz.” which gave me a chuckle.)

I also felt the true weight of how my incorrect diagnosis of “manic depression” (BiPolar) at age 14 came at a huge cost, and never felt quite right anyway. Just as I never felt quite right in the world, nor sure where I fit in. That has also been the fate for countless of us Autistics with any sort of perceived mental difficulty or disorder, as is highlighted repeatedly in NeuroTribes.

I think many people reading this book will finally feel like I did, that they aren't alone. I experienced so many moments of self-recognition as I turned the pages -- what a gift. Being able to see autism history all laid out this way has helped me come to terms with many parts of the difficult past. In fact, through Silberman's expansive research we learn that -- by virtue of our unique but valid ways of communicating and differing minds and abilities -- Autistic people have literally given the world the ability to be as connected as we are with technology. Without us, NeuroTypical people would still be in the Dark Ages!!

At times, it was hard to make my way through NeuroTribes. I didn't expect to get mad so often. Mr. Silberman unfolds our dark history in ways that left me horrified -- by the scope of excessive cruelty, and complete lack of care towards autistic people like myself. Knowing some of the ways we are seen by others, and by society as a whole, still didn't prepare me for the sadness I felt when New York Times reporter Eliot Fremont-Smith talked about Autism as “an illness, a suicide really, of the soul.”

Throughout our history, any type of mental diagnosis almost always led to being institutionalized, with many vulnerable people treated worse than with animals. (It also led to our history being interwoven with that of Nazi eugenics.) We experienced electrical shocks, sterilizations, physical punishments as "teaching."  Silberman specifically covers the mistreatment of people with epilepsy, a condition many of us on the Spectrum experience. It was sobering to realize how people like me were treated, and what my fate would have been, not that long ago. Silberman doesn't sugarcoat those bad parts, and I appreciate that. 



Many who were leading the defining of autism seemed too blinded by their own spotlights or agendas (Kanner, Bettleheim, Lovaas). We see how painfully slow those personal agendas made any progress towards our current level of understanding, and how it didn't need to be that way.

I had to pause for thought a lot. I wrote Shannon at one point to vent about the things I was learning about Leo Kanner, the physician widely credited with being the first to define autism. I didn't expect to be so angry at him, or to find myself so enthralled by Hans Asperger -- who actually defined autism first. (I shudder to think where we would be without Mr. Asperger.)

The histories in NeuroTribes weren't and aren't all bad and hopeless, though. There are heroes (including Leo Kanner, what a complex character) and free thinkers all throughout the book. My anger was calmed and replaced by such admiration for the goodness and perseverance of many people we meet.

Two chapters in particular really touched me. “The Boy Who Loves Green Straws” gave me an intimate look into the lives of the Rosa Family, and my respect and affection for them greatly deepened. Having come full circle with some of my own beliefs and ideas, I know it's not easy to open up and expose yourself like that. Then “Pandora's Box” educated me about Lorna Wing, an English psychiatrist and physician who deserves far more recognition for her work advancing the acceptance and understanding of Autistic people and Autism. After reading about so many setbacks, to then be educated about Lorna's work really inspired me. I will continue to learn more about her as I grow in my own self advocacy and activism.

As I got deeper into NeuroTribes and kept going back over my notes, what stood out the most for me is how Silberman uncovered and compassionately laid out every bias society has about Autism and Autistic people. (A bias is defined as a "prejudice in favor of or against one thing, person, or group compared with another, usually in a way considered to be unfair.") I'd be reading along and suddenly yell, “Oh that's where people got that bias from!” I think exposing those biases is going to be a change catalyst for so many people. To understand where we get ableist views from, to see how our hurtful ideas are sometimes rooted in outright lies, gives opportunity for change and growth. I feel this will be one of the legacies the book leaves us with: a shift in word and action which leads to a more inclusive world for everyone.


I cried when I finished the book, for many reasons. Reading NeuroTribes was a journey of self-discovery, and I feel changed in a very good way for taking it. The book left me with the knowledge that even when it feels like we aren't making progress on behalf of autistic people and Neurodiversity, we truly are. That one person can make a difference, and that difference can be nurtured into something amazing that includes many.

I also feel such a debt of gratitude to all those who turned the tide in a better direction, especially The Autistic Self-Advocacy Network's 2007 campaign protesting NYU's Child Study Center's billboards about the "silent public health epidemic" of childhood mental illness. In David and Goliath fashion, the underdogs won and the billboards got taken down -- and I am left with a fierce feeling of pride and self worth as an Autistic human. I'm invigorated, and have a better understanding of the type of advocate I want to be.

I saw myself reflected back in this groundbreaking book, and it gave me the most complete picture of myself I've ever had. I don't care that Mr. Silberman -- who I saw call himself a “boring NT” on Twitter a few days ago -- helped give these feelings. Far too many other non-Autistics have taken too much away from us, for far too long. So I'm willing to accept and be grateful for what I see as Silberman's gift to the Autism community, and Autistic people everywhere: fostering a Neurodiverse society.

NeuroTribes's overall message is clear: Accepting Neurodiversity is key. Autistic people belong here. We make the world better and smarter in so many ways, and it literally wouldn't be the same, or as interesting, without us.

Saturday, August 29, 2015

Liz Feld and Autism Speaks: No, Really, You Need to Listen

Shannon Des Roches Rosa
www.thinkingautismguide.com

Liz Feld may be the President of Autism Speaks, but her recent A Call for Unity letter is not exactly presidential
. Unless your idea of a good President is someone unable to take clues from the majority of the people they are supposed to be leading and serving. Ms. Feld's letter is as tone-deaf and wrongheaded as then-President George W. Bush feeling insulted by Kanye West's post-Katrina remarks that Bush "doesn't care about Black people" -- instead of asking himself why Kanye was so outraged.

Feld's letter is an equally clueless, defensive, and dismissive response to NeuroTribes author Steve Silberman's Los Angeles Times op ed Autism Speaks Needs to Do a Lot More Listening, in which Silberman critiques Autism Speaks outright on its leadership, community outreach, and research investment practices.

Feld rarely addresses Silberman's points directly (she doesn't even link to his article), choosing instead to writing a promotional piece about all the good she thinks her organization does -- based on its own yardsticks. And she completely ignores Silberman's observations about exclusion and representation, such as, "Imagine a world in which the leadership of the NAACP was all-white; now consider that not a single autistic person serves on the board of Autism Speaks. This absence makes itself felt."

I am the parent of high-support autistic teenager. And this is what I believe being a supporter of, a loved one to, or a reporter on a community one does not belong to requires: a specific humility mandate to listen to the people in that community, and put them and their concerns first. That doesn't mean ignoring the concerns of parents, supporters, or organization heads. But it does mean letting autistic people themselves lead and guide autism efforts.

Which makes it doubly insulting when Feld goes on to prove Silberman's statement that "The people most often sidelined or excluded from the public discussion are autistic themselves. It is often assumed that the experts, or the parents of people on the autism spectrum, will do the talking in their stead." Feld's Call for Unity completely omits autistic perspectives, while including and prioritizing parents' voices and talking about the importance of "families" -- as though individual autistic adults are incapable of having a real opinion.

And that's the real problem. As autistic activist and parent Lei Wiley-Mydske tells Feld in the A Call for Unity comments:
"It's not just Steve Silberman's point of view. Actually Autistic people have been saying this for YEARS about your organization. Nice of you to finally listen when it's a non Autistic person speaking. It just shows how much you continue to disrespect us and why there can never be unity as long as you continue to erase our voices."
Other autistic critics of Autism Speaks, like M. Kelter, point out that this lack of unity is actually a positive sign, for autistic people:
"I like division. I like what it represents. In the context of discussions about autism, division means the old [negative] view has some competition. And yes, that's going to make some people uncomfortable, but that's okay. You don't need to be comfortable.
"You just need to make space at the table."
Admitting that one has made -- and can learn from -- misfires is not easy. It takes a lot of that previously mentioned humility. But if Feld truly wants to be of service to her community, I'd advise her take a cue from Cara Liebowitz on learning from one's ableist (disabilty-discriminatory) mistakes:
"...if you screw up, well, it happens to the best of us. Just apologize, ask what you can do to make it right, and make a conscious effort not to make that mistake again in the future."
I'm not going to hold my breath, though. Autism Speaks has a lot of apologizing to do. A lot. So until they start listening -- something they've shown very little ability to do -- the criticism will continue. 

A photo posted by Boycott Autism Speaks (@boycott_as) on
[Image: Dark textured background. Light text reads:
"Autism Speaks wants "unity" without addressing a single criticism of their organization by actually Autistic people.
Unity can only come when Autistic voices are centered, when Autistic lives are valued and when Autistic people are treated with respect and dignity.
Autism Speaks, if you want unity, that's where you start.
We're waiting......
‪#‎BoycottAutismSpeaks‬ facebook.com/boycottautismspeaksnow "]

Tuesday, August 25, 2015

NeuroTribes Is Finally Here: Celebrating With a Review, and a Giveaway

Shannon Des Roches Rosa 
www.Squidalicious.com
 
Steve Silberman and Leo Rosa
[image: a white man with short salt-and
pepper hair, and a white teen boy with short
curly brown hair, sitting on a green bench.]
Steve Silberman's long-awaited book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity arrives in bookstores today. Finally! If you have any interest in autism whatsoever, then trust me, you need this book. (No, really. We are so excited that NeuroTribes exists that we're hosting a giveaway, details below.)

I'll be upfront with my disclosure: When Silberman described his intention to write a book that "upends conventional thinking about autism and suggests a broader model for acceptance, understanding, and full participation in society for people who think differently," my family and I agreed (and were honored) to be included in the project.

But I would recommend NeuroTribes regardless; I've been pining for an autism book this information-rich, this compassionate, this beautifully written, this revelatory, and this necessary, ever since my son was diagnosed with autism eleven years ago. And I hope you will agree.

I spoke with Mr. Silberman earlier this month, about some of the many topics and people featured in NeuroTribes -- including the concept of neurodiversity, the myth of an autism "epidemic," the difficulty of condensing five years of research into a single book, and why autistic leadership matters. The bulk of that interview is also up today, at BlogHer. The rest of our discussion follows.


----


Shannon Rosa: You uncovered disturbing scenarios from Ivar Lovaas's work with autistic children at UCLA, while he was developing Applied Behavioral Analysis as a "treatment" for autism. How did he get away with behaving so badly towards those children, according to your research?

Steve Silberman: The outrageous cruelty of Ivar Lovaas to the children in his clinic in the 1960s was unforgivable, but it was also a very complex thing. What isn’t a matter of debate is how monstrous, barbaric, and inhumane some of his methods were. He would give pre-schoolers painful electric shocks to encourage them to hug the experimenters, and to punish them for exhibiting behavior like echolalia, which turns out to be a distinctively autistic way of learning language, as Barry Prizant explains in his fabulous new book for parents and clinicians, Uniquely Human.

We should be quite blunt: Lovaas was engaging in torture, by any standard.

But it’s also crucial to understand how he excused his own behavior, which was that he earnestly believed he was saving these children from an even worse fate: life-long institutionalization. He would see children who had chewed through their own fingers in places like Camarillo State Hospital in California. The problem was that he didn’t ask if this self-injurious behavior was the natural course of autism, or if it was the children’s response to being put in brutal institutions, where they were subject to isolation, restraint, abuse by the staff and other residents, and so on.

We have to remember that Leo Kanner’s recommended course of treatment for autistic children was institutionalization, to remove them from the family environment that he catastrophically blamed for causing their autism. So, with very few exceptions like Temple Grandin -- who escaped that horrible fate because her mother Eustacia refused to put her in a place like Camarillo, and because she was diagnosed with “minimal brain damage” rather than autism -- two generations of profoundly disabled autistic kids ended up on psych wards, in straitjackets, being beaten by the staff and drugged out of their minds. Compared to a lifetime of that, Lovaas must have thought, what are a few electric shocks?

This is why it’s so important to understand the history that I tried to bring to light in NeuroTribes -- to understand both how inhumane some of Lovaas’ techniques were, and what he was reacting to.

SR: Without giving too much away: in researching the history of the Oscar-winning film Rain Main and how it fits into our cultural conception of autism, what are one or two discoveries that surprised you?

SS: The main thing that surprised me when researching Rain Man was realizing that Dustin Hoffman’s character of Raymond Babbitt was the first autistic adult that most people in the world had ever seen. Nowadays, it’s easy to trash his character as an autistic stereotype -- the savant skills, the goofy catchphrases, and so on. But what the people saying those things don’t realize is that there were no autistic adults in mainstream media up to that point, with very rare exceptions.

It’s not like now, where every hip new TV series seems to have to have an “Aspie” character. Autistic adults were virtually invisible to the culture -- even to most clinicians! -- because the diagnosis was not made available to adults on a mass scale until the 1990s. Even Temple Grandin, when she first started making the rounds of autism conferences, billed herself as “recovered from autism” because autism was still considered to be a disorder of the first years of life, as Leo Kanner had originally framed it.

But another really important thing to understand about Rain Man is that it could have been better, because at the end, Raymond has to go back to the institution, because he is clearly unable to survive outside of it. Yet the real-life autistic people that Raymond was based on -- people like Joe Sullivan and Peter Guthrie -- were living in the community with the help of their supportive parents. They represented the real natural course of autism: autism minus the decades of brutality and degradation of being shoved away, out of sight, in state hospitals. And they’re both still doing fine, though obviously they’re still very autistic. Peter continues to work in a library at Princeton University, as he has for decades.

So I ended up having great respect for what screenwriter Barry Morrow and Dustin Hoffman did with Rain Man, which was to make autism visible to the lay public on a global scale for the first time in history. With the little caveat that it could have been better.

----

GIVEAWAY

Update:
The winners are Erin, Kacy, and Mass der Dinge! Please write to us at thinkingautism at gmail with your mailing address so we can get copies of the book to you. Winners selected using Random.org.

----


The publisher of NeuroTribes is letting us give away three hard copies of the book. If you would like to be considered, please leave a comment below, describing why you want your own copy. We'll use Random.org to select three winners on the morning of Friday, August 28th (Pacific Time).

Thursday, June 4, 2015

Whither Autism Research? Observations From IMFAR 2015

Shannon Des Roches Rosa
www.ThinkingAutismGuide.com
twitter.com/shannonrosa

TPGA has made a point of attending IMFAR, the annual International Meeting for Autism Research, since 2011. We believe it is important to go beyond learning about the current state of autism research by talking with and listening to researchers directly -- and not just about current research, but about how research can better benefit autistic people, in addition to those who love, live, and work with autistic people of all ages and abilities. 

Here is what we learned and observed at IMFAR 2015, which took place last month in Salt Lake City, Utah. Note that the IMFAR conference itself -- with scores of presentations and hundreds of posters -- is overwhelming, and we only got to see part of what was actually presented and discussed in the full conference. We also live-tweeted several sessions from the conference, and compiled that coverage at Storify.

This is a long and link-rich post. Do not feel the need to absorb it all in one read. 

Questions very welcome.

----

Who Should Autism Science Be Serving?

IMFAR 2015 brought hundreds of contemporary autism researchers together to discuss their work with each other, various members of autism and autistic communities, the press, and the world. Whereas in the past the conference has been more purely research-focused, IMFAR has evolved to better serve and include the communities its researchers study (though more work is needed, with regards to medical model language, etc.).

INSAR president Francesca Happe's position set a welcome tone for the conference with her pre-IMFAR Op-Ed Autism Truths and Myths: The State of the Science:
"Autism is not just about children or males.

"Researchers now widely recognize that ASD is not a rare condition and that perhaps one percent of the population has autism. The popular conception of autism is of the child with the far-away gaze, and the vast majority of published research is on children with ASD. However, it's important to remember that most people with autism are adults.

"Concentration on early diagnosis and intervention for ASD has been important, but can leave the impression that later intervention is impossible or ineffective. In fact, little is known about ASD in older adults, and equivalently intensive interventions could also lead to major improvements in functioning and well-being late in life."
Hers was part of a cheering aspect of IMFAR 2015: a greater recognition of the autistic people who are here already, and the need for science and research to better serve them. Which is very much needed, as autistic writer Judy Endow notes:
"I love when science catches up to the autistic experience. It allows countless people to receive validation overnight. We go from “psychologically disturbed” and “behaviorally challenged” to “scientific” all because science has caught up with our everyday experience of the world around us."
The conference itself featured more autistic leadership than in the past, as well as more autistic buy-in, and more autistic people being consulted by scientists on matters that will help autistic people's quality of life today, not in the distant future. This is not to say we don't need long-term studies too; but we need to balance the proportionality of autism research, to skew more towards enabling the autistic people of all ages and abilities who are here already to live the best lives possible.

(The research community itself also has work to do regarding de-stigmatizing autism, as not all the autistic academics and researchers at the conference felt comfortable being "out" as autistic. That hesitance is for a good reason: many autistic professionals report that their competency is questioned, once they disclose an autism diagnosis. This needs to change.)

And, beyond research, the conference itself needs to consider how to better accommodate autistic attendees, because there are still far too many autistic people who want to attend but do not or cannot. In talking with autistic people who didn't attend but wanted to, the primary barriers are finances, processing, and sensory issues. With regards to finances, the costs of attending IMFAR (fees, lodgings, meals, travel) are not realistic for people who live on Disability assistance, as many autistic people do. And the difficulty of processing and responding to speech and visuals in real time can overwhelm many autistic people, as can sensory issues like lights, noise, and crowds. (And the fact that these issues aren't studied enough doesn't really help.)

Here's what could improve participation: making remote access to sessions available (many autistic people participated remotely via social media options like Twitter), providing noise-cancelling headphones, using color-coded communication preference badges, providing sound-proofed booths with audio piped in (such as translators use). We really do need more autistic people at IMFAR, and to do that we need to remove participation barriers.

We also need more autistic people directly involved with the IMFAR conference itself, participating in committees and planning. But, again, finances may be an issue, which means that the $100 INSAR membership fee is a barrier.

Still, it was gratifying to witness the efforts of autism researchers who argued for putting autistic people's needs first. In her post on IMFAR takeaways, Sue Fletcher-Watson from the The University of Edinburgh​ made a case against normalizing autistic people, and for instead work towards the goal of being "optimally autistic":
"Pushing every child on to the same, neurotypical pathway, ending up in the same neurotypical city, is boring at best, abusive at worst. Early intervention research needs to have a firm foundation in engagement with the autism community, and an appreciation of the skills and learning of the autistic child. If early autism researchers can keep this in mind, we might be able to create something truly valuable – a way to help autistic children become optimally autistic."
In the same post, Dr. Fletcher-Watson also noted that:
"Early intervention research needs to have a firm foundation in engagement with the autism community, and an appreciation of the skills and learning of the autistic child."
For those in search of specific best practices guidelines, SARG (the Scottish Autism Research Group) recently provided seven concepts to consider, for those who want to do good autism research:
Four can be considered hallmarks of good, stakeholder-endorsed research:
  • Connections. Between researchers, the community and practitioners, in both directions.
  • Researchers understanding what needs to be done ‘on the ground’. Practitioners and communities understanding constraints on
 research.
  • Impact: Translation of research evidence into practice recommendations. Policy based on the cost of doing something versus the higher cost of 
doing nothing.
  • Outcomes. High quality measurement of meaningful progress.
In addition, three challenges to effective, engaged research were also identified. These are:
  • Scale: research tends to deal in ‘average’ behaviour in a group, but practitioners and community members need individualised supports
  • Funding: the perceived priorities of major research funders seem rarely to correspond with community priorities
  • Time: this resource is always in short supply and prevents practitioners from drawing on research evidence, researchers from sharing their 
findings, and community members from either taking part in research, or sifting through the myriad options being offered by commercial operators.
And, as SFARI's Greg Boustead wrote,

"If there is an overriding takeaway from IMFAR 2015, it has to be that a dialogue in which scientists engage directly and respectfully with those they seek to help can be incredibly productive. Scientists talking to each other doesn’t hurt, either."

Press Conference

Dr. Francesca Happe speaking at the IMFAR press conference.
[Image: A beige-skinned woman speaking at a raised podium
with a microphone, to the side of a long table with an
off-white skirt, at which several other people are seated.]
The IMFAR Press Conference (our coverage is on Storify) featured selected research from the conference itself, and had some good examples of how research could improve, as well as how it can help existing autistic people.

It was also an example of how social media allows conversations that would previously be impossible. When J.D. Buxbaum discussed his study Oxytocin Reverses Social Deficits in the Shank3-Deficient Rat, a First Genetically Modified Rat Model for Autism, autistic people chimed in via Twitter, expressing concern that the researchers were studying rats than talking with them.
Standout press conference talks included:
Keynotes and Sessions
Roy Richard Grinker
[Image: Man with short silver hair, beige skin,
and glasses, speaking at a podium]

Roy Richard Grinker

The opening IMFAR keynote was given by anthropologist Roy Richard Grinker, author of the cultural/historical autism investigation Unstrange Minds and parent of an autistic young adult. The talk was titled Who Owns Autism? Exceptionalism, Stigma, and Stakeholders, and challenged his listeners to consider that autism is a cultural construct, the stigmatizing and culturally transformative powers of language and labeling, and other provocative ideas.
Our Storified live tweet coverage of Dr. Grinker's talk also includes his comments from the IMFAR stakeholders' luncheon.


John Elder Robison and Simon Baron-Cohen

Author John Elder Robison and researcher Simon Baron-Cohen told the audience many things a researcher-centric audience needed to hear during their session Autism & Society: Taking Stock of the History & Meaning of Autism Research. They spoke alongside Maureen Durkin, who talked about autism and intellectual disability as well as realistic evaluations of autism prevalence rates based on factors like diagnostic substitution, and Olga Solomon, whose talk Emic and Etic Perspectives in the Construction of Authoritative Knowledge on Autism gave me harrowing flashbacks to grad school Semiotics discussions and rendered me unable to tweet. Apologies to Dr. Solomon. (For complete session details, see our live-tweeted coverage.)

John Elder Robison
[Image: Man with short silver hair, beige skin,
and glasses, leaning on a podium]
Mr. Robison nudged the audience about its higher-than-typical exhibiting of autistic traits. He also passionately described the need to better identify autistic people and de-stigmatize autism -- so no one has to repeat his experience of becoming a star and then flaming out, both due to undiagnosed autism.  He also wants scientists and researchers to really to listen to autistic people -- and clarified that that wasn't an accusation. He received a standing ovation from the packed room.
Baron-Cohen talked about the difference language can make when discussing and diagnosing autism, and also about recognizing the needs of autistic people -- but to support, rather than normalize them.


Minimally Verbal Individuals SIG

I attended the IMFAR 2015 SIG (Special Interest Group) on Minimally Verbal Individuals. Most of the discussion happened in small groups. I joined the Adult Outcomes group, led by David Beversdorf from the University of Missouri. Even in the short time available, and with top experts at the table, it was clear that autistic adults have no guarantee they will receive the types of supports they need and deserve, that there's no one plan or infrastructure to support minimally verbal autistic adults long-term, and most that most families are under informed and unprepared about their autistic members' futures. Additional takeaways plus live tweets on Storify, feedback welcome.

Autism, Anxiety, and Math

The Autism, Conditioning, & Anxiety session was fascinating and covered information that was decidedly useful; details are in our Storify summary.

D. N. Top provided more evidence that anxiety doesn't just frequently co-occur with autism but is qualitatively different for autistic people -- as in, the structures of the brain itself react differently in autistic people than non-autistic people. This, obviously, needs more investigation.
And J. Beck did some welcome mythbusting, in demonstrating that, contrary to stereotypes, most autistic students in a sample did not have superior math skills -- most had average or even below average math skills. Talking about this study brought validation, to many autistic people, parents, and teachers following our live tweets from the session.

 
ASDtech Special Interest Group (SIG) and Discussion
 
I did not take a photo during the session,
so here is me and Sue from IMFAR2014.
[Image: two red-haired, beige-skinned
women smiling at the camera.
The one on the left is wearing glasses.
The one on the right dyes her hair. Shhh.]
Sue Fletcher-Watson of Edinburgh University led the ASDtech autism and technology SIG session and discussion. The SIG focused on ASDtech dissemination, specifically:
  • how and what to disseminate between researchers to permit replication and develop evidence of effectiveness
  • international dissemination issues: language, culturally appropriate content, available global dissemination routes
  • open source dissemination: why, when and how?  What about long-term consumer support and technology updates?
  • keeping researcher-developed and/or evidence based technologies up to date with latest commercial developments
  • other challenges to, and guidelines for, successful tech dissemination
The multi-disciplinary panel included yours truly, Shannon Des Roches Rosa of Thinking Person's Guide to Autism; Ofer Golan of Bar-Ilan University and The Transporters; Dan Smith, President of DELSIA, (Delivering Scientific Innovation for Autism); and Oliver Wendt of Purdue University/SPEAK MODalities LLC.

My full comments from the panel can be viewed at session writeup How Can Tech Benefit Autistic People? My primary takeaways:
  1. Help, don’t try to normalize autistic people. Keep the humanity of autistic people in the front of your mind at all times. They are people, not projects.
  2. Implement good design -- there is so much good tech content stymied by bad design!. This can also ease localization into other languages and cultures.
  3. In many countries and regions (e.g. Accra, Ghana) there is often no or little wifi, or even available devices. Tech has to work under those conditions.
Many autistic friends and colleagues responded to this writeup with specific thoughts about how ASDtech could help them.

Those who want to keep abreast of the state of ASD tech should make the most of Dr. Fletcher-Watson's DART (Development Autism Research Technology) project, at www.dart.ed.ac.uk.

IMFARchat: IMFAR2015's Twitter Chat and Roundtable

Some of the IMFARchat participants: John Elder Robison, Francesca Happe,
Amy Daniels, Michelle Villalobos, David Beversdorf, Greg Boustead,
Rachel Zamzow, Jamie McPartland, Simon Baron-Cohen
[Image: Nine people with open laptops gathered around
round white tables pushed together in a hotel conference room.]
SFARI (the Simons Foundation Autism Research Initiative) hosted IMFARchat, a live Twitter Q&A discussion of trending IMFAR 2015 topics. The chat included scientists from the conference and beyond, reflecting on some of the research presented and discussing next steps for advancing autism research. The conversation also included input from journalists and academic institutions, as well as voices from the public. It was an evidence-based success, with 5,117,314 Twitter impressions.

IMFARchat co-moderators Greg Boustead and Michele Villabolos kept the discussion flowing by posing questions, which were answered by an enthusiastic swarm of participants:

For details, SFARI provided a full transcript of the IMFARchat, and PFAnderson created a Storify version.
Looking pensive during IMFARchat. Photo © SFARI
[Image: red headed woman & silver haired man,
both with beige skin, both at open laptops.]

Other Notable IMFAR Research

Some of the more intriguing research we missed covering at the conference itself:

Rita George's work on Sexual Orientation and Gender-Identity in High-Functioning Individuals with Autism Spectrum Disorder (note medical model language). Results:
"When compared to controls, individuals with ASD demonstrated significantly higher sexual diversity, reported gender-identities incongruent with their biological sex, and higher gender-dysphoric symptomatology. Females with ASD reported higher rates of homosexuality and bisexuality than males with ASD, and higher rates of gender-dysphoric symptomatology."
You can participate in Rita's ongoing project by filling out her online survey on developing sexuality materials for autistic people. There are both quantitative and qualitative (personalized answers) versions of the survey.


Kristen Bottema-Beutel's work on Adolescent Judgments and Reasoning about the Failure to Include Peers with Social Disabilities. Summary:
"Adolescents with autism spectrum disorder often do not have access to crucial peer social activities. This study examines how typically developing adolescents evaluate decisions not to include a peer based on disability status, and the justifications they apply to these decisions."
Full article [PDF download available].


Lorcan Kenny's presentation How Should We Describe Autism? Perspectives from the UK Autism Community. Background:
"The language used to describe autism has undergone considerable changes since autism was first described. Changes have come from the medical and scientific communities, as diagnostic criteria and understanding of the condition have evolved, and from parent and self-advocacy groups, as the disability rights and neurodiversity movements have gained in prominence. These changes have been brought about partly due to important tensions in what people believe autism to be. Such changes also have important consequences as the way in which people choose to describe autism influences personal and societal perceptions of what the condition entails."

Lisa Croen's work on
Physician Knowledge and Experience with Autism in Adults:
"As children with autism become adults their primary medical care will move from pediatrics to adult medicine. There is little evidence of knowledge about autism among adult healthcare providers, and of their readiness to provide optimal care for this adult population."
Dr. Croen's work was also covered at SFARI.org:
"[Health care] providers admitted to being unprepared: 77 percent rated their ability to care for someone with autism as poor or fair. What’s more, they seemed unaware of how many adults with autism were in their care." 
And of course, these doctors could always look to the AASPIRE www.autismandhealth.org toolkit for better assessing the healthcare needs of autistic adults....

Musical Interludes

A few prominent conference speakers took over the pianos outside the main IMFAR conference halls -- mostly unnoticed by conference attendees. As I told one of the pianists, in this specific context it was like U2's recent adventures in getting away with incognito busking at a NYC subway station. It was also highly entertaining.

 



 
Final Thoughts

Things are getting better at IMFAR, in terms of how autistic people -- the reason INSAR and IMFAR exist -- are treated, included, and consulted in autism research. We still need more progress, though, in terms of determining best practices, supports, and services for autistic people in the here and now, moving away from objectifying medical model language, listening to autistic people about what they want and need instead of relying solely on family member and professional observations, and getting more autistic people to and involved with IMFAR/INSAR.

A final example of why IMFAR matters, why we need more of the unique synergies it makes possible when various members of the autism communities connect, happened after the ASDtech SIG. John Elder Robison joined a conversation I was having with a pediatric ophthalmologist about my comments during the SIG on the role simple tech can play in autistic qualify of life and learning. I was advocating for simple sensory screening with tinted glasses lenses, as per the advice autistic people themselves as well of UK author and practitioner Phoebe Caldwell, whom I heard speak on sensory issues last year at the National Autism Society Professionals conference:
The ophthalmologist looked skeptical, until Mr. Robison started talking not just about autistic sensory issues and interference, but, as a professional photographer, about the science of light, and why filtering out certain light wavelengths could actually make sense in the case of people who have trouble processing visual information. Mr. Robison seemingly handed the ophthalmologist an epiphany, one that might end up making a real world difference for that doctor's autistic clients. It was a lovely moment, and I was glad to be present when it happened.

I'd always heard that a Mormon missionary's year of service is considered a success if they convert one person. By that yardstick, IMFAR 2015 was indeed a win.