Thursday, April 11, 2019

A Conversation About Autism and Neurodiversity with Steve Silberman and John Marble

Steve Silberman, Shannon Rosa, and John Marble
[image: Three adult white nerds, posing together and smiling.]

Shannon Des Roches Rosa
Senior Editor

A large, friendly, and neurodiverse crowd came together at Square headquarters in San Francisco last night, to hear Steve Silberman and John Marble in conversation about autism and neurodiversity. The event was organized by by TPGA contributor Chris Williams and TPGA friend Chris Ereneta, Square employees both.

We live-tweeted both the witty, empathy-filled conversation and the useful Q and A afterwards, but as tweet streams can be hard for some people to parse, here's a streamlined text (and typos-fixed) version:

Steve is talking about the origins of his book NeuroTribes, how in the early aughts, before he began his research, he thought autism was rare. And how the conspiracy theories about causation were really running rampant. He wrote his classic Wired article The Geek Syndrome in 2001, talking about how some autistic people were finding refuge in the Tech industries of Silicon Valley—and would often have autistic offspring. Steve got weekly emails about his Wired article on autism for 10 years, and during that time noticed that the media emphasis on autism was skewed—people were arguing about vaccines, instead of focusing on the day-to-day needs of autistic people and their families.

There was a book in the 80s by a marriage and family therapist, called “Silicon Valley Syndrome” that appeared before the Asperger’s diagnosis was even part of the DSM, and Aspergians were even recognized as existing en masse. But they obviously existed and were definitely not getting the support they needed. Steve said the author could have changed the title to "Asperger Syndrome" without changing a word of the book itself. So people with autistic trait have been building Silicon Valley and the industries around it for decades. This is a place where autistic traits and talents can be appreciated.

John, who is 42, said that most people his age did not have diagnoses as kids. But he was lucky in that he grew up in a small town, and educated with the same cohort of kids, who knew him.

A few years ago, while working in the Obama administration, John was trying to figure out what was going on with him; he thought he was having episodes of being “deaf” but was actually having sensory overwhelm that was shutting down that sensory channel.

John initially resisted his autism diagnosis. Then a friend introduced him to Ari Ne'eman, and said maybe Ari could help him. Ari and John had coffee, but Ari intentionally asked to meet in a super-busy Starbucks. When John got overwhelmed, Ari suggested moving to his quiet office, and then they talked about the autistic reasons for what John was experiencing.

John says that getting an adult diagnosis is still really difficult. It’s mostly not covered by insurance, and private pay can be $5K+. Ari advised John to go to an autistic meetup. And he met his peeps and got to ask them about What. Autistic. People. Do. Which was revelatory. And then John went to an all-autistic retreat, and got to meet all sorts of autistic people—with ID, Down syndrome, AAC users, and more, and realized that autistic people are diverse, but share commonalities. The same was that French people are diverse but all understand French.

Steve says that Ari Ne'eman helped him too, by encouraging him to go to Autreat and see autistic people on their own turf (rather than in the previous stress bomb NT environs he was used to witnessing autistic people coping in) before he started his #NeuroTribes research in earnest. At Autreat, Steve had so many of his assumptions about autistic people exploded into dust. Like about having a sense of humor, e.g., when Ari was greeted by another autistic person with, “We love you Ari — if we were capable of feeling such an emotion!" At Autreat, everyone was so accepted and encouraged to do their own thing, that Steve found re-emerging into the NT world toxic and overwhelming.

(John mentioned the he was actually a member of the Obama administration before Ari, who was feted as the first actually autistic Presidential appointee; John just wasn’t out as autistic then. :) )

John on the absurdity of the “no humor” stereotype for #autistic people: How could that be true, when no one can even get tickets to autistic comedian Hannah Gadsby’s sold out shows?

John on the social vs. medical model approaches: Social means the difficulties disabled/autistic people experience are imposed by society. Medical model is deficit-based (what is wrong with the person). [We think life is mostly social model, but also disability is real, so.]

John also asserts that everyone stims! For autistic people having their stims suppressed is like an non-autistic person being at a rad dance concert and not being allowed to move their bodies at all.

John is name-checking AASCEND, a local group for autistic people and parents which has a monthly TV show. But whenever he was at a gathering the socializing changed the moment the non-autistic people left. Code switching for autistic people is a thing just like in any other non-majority group.

When Steve started looking at autism and autistic culture, he was able to identify with the cultural/outsider/marginalized/identity aspects because of growing up Gay when homosexuality was still part of the DSM.

ohn found it easier to come out as autistic because he’d already gone through the process of coming out as gay—he had a template.

Steve wants to know what John things companies who want to do right by autistic people/employees need to do.

John: Acceptance and accommodation. Most of the managers he consults with worry about how to retain their employees. Acceptance and accommodation is how.

John: Autistic people are EVERYWHERE. So the more we can educate people about autism and accept autistic people as a different type of normal, that’s what will make the difference. And we need to stop forcing autistic kids to fit into non-autistic roles.

Steve: We need to redirect autism research. Currently 32% of research is genetics and only 2% is only lifespan/QoL issues. That is messed up.

Steve: And we STILL don’t know how many autistic adults exist in the US, because we’ve never had a comprehensive prevalence study. So all those people who need support are not getting it. We do know that the UK did a study, and the kid/adult #autism prevalence was identical. So when people talk about autism “epidemics” or “tsunamis” that is not only completely wrong, but it ignores all the undiagnosed autistic people who are struggling to get by with supports and accommodations.

Steve: And we have to broaden our perception of what autistic people can do, because they are not all tech geeks. Many have no interest in working at places like Square.

John: Not. All. Autistic. People. Are. White. Men. That’s just the stereotype. Autistic people are as diverse as the rest of the population. And the increasing autism prevalence rates in the US mean we’re getting better at recognizing people, not that there’s an autism “epidemic."

Steve: As part of his research. he realized the reason autism prevalence rates are lowest among Hispanic families in Florida is lack of access to health care, not due to lack of autism prevalence.

Steve: John, if you could reinvent the world to accommodate autistic people, what would you do?

John: Center autistic people in autism conversations, policy, curriculum, and organizations. This is why most autism tech is junk; autistic people weren’t consulted. [He] is done with autistic people being excluded from autism conversations. This has real-world effects, because we need solutions and autistic people largely aren’t involved in working towards them.

John is passionate about connecting autistic adults with parents of autistic kids. He wants to buy all the parents a big box of wine. And he feels like a translator between the two groups.

John is talking about how he and my son Leo are examples of autistic people who look very different superficially, in terms of traits, but who are actually really similar in so many autistic ways. They are very same same and enjoy hanging together. It’s delightful.

Steve: While not all autistic people will be able to support themselves, we need to communicate to all autistic people that they can have a great future.

When Steve spoke at UN world autism day, he met a guy who was diagnosed with autism at age 70. Steve asked him what people thought he was before his diagnosis. His answer? “An engineer."

John likes to show parents autistic ppl who are successful, but also wants to be honest about the current challenges are. But he sincerely believes that all autistic people could probably have better supports than they have now. Society needs to change its priorities for autism.

John had always made his own accommodations while working at the White House, until he hit a wall. He asked his boss for an one, though worried he would lose his security clearance, get fired, etc...

mentions His boss’s response? “That’s fantastic.”

Why? He needed people who saw things differently, had different perspectives, solved problems differently. It changed John’s life, and he started leaning into being autistic.

John: The problem for most autistic people who are seeking jobs is the employment/interview process. It’s not autism-friendly. The culture needs to change. Because the skills needed to succeed in a job often have nothing to do with autistic interviewability. This is why John started @PivotDiversity, to change the culture of Silicon Valley, tech, and other industries to accommodate autistic and neurodiverse potential employees. Because until that happens, everyone is losing out on opportunities.

John: Autistic people are not down for exclusion and often walk off panels when there isn’t sufficient representation.

Now Chris Williams is speaking. When he was hired at Square, he had just been diagnosed as autistic, and disclosed during the process. It was astounding for him to be hired under those circumstances. And then at the office Chris W. ran into co-worker Chris Ereneta, who was wearing a neurodiversity tee. Chris W. saw his brain on someone else's shirt! And they connected about their neurodiverse families. Plus it was the first time anyone had told Chris W. he didn’t need to apologize for the way he communicated, which was revelatory.

(And then the entire room erupted in applause for Chris W.!)

An audience member asked about DSM changes. Steve: Important to note that the DSM 5 is the first time autistic adults had input on the autism diagnostic criteria.

Steve: People ask him which orgs to support since Autism Speaks is not good (euphemism), and he tends to recommend the Autistic Self Advocacy Network (as do we).

John: Professionals need to learn from autistic people, because most of them don’t really know much about autism (esp. doctors/therapists) and so helping autistic people is going to be really challenging under those circumstances.

Steve: Only 2% of the autism research outlay is on lifespan/QoL because the mainstream approach to autism is all about pathology. And so we keep overlooking autistic people who don’t fit typically-perceived autism molds.

John: A lot of autistic people don’t like Autism Speaks because they spend less than 2% of their budget on Lifespan/Quality of Life supports for autistic people and their families. But we have to have empathy for parents who listen to the mainstream narrative bc it dominates and it’s hard to find good information [which is why TPGA exists, in large part.]

John and Steve: The most important thing for parents who want to help their autistic kids, especially post-diagnosis, is to find autistic-informed resources. (Like our guide After an Autism Diagnosis: 13 Necessary Next Steps For Parents.)

Monday, April 1, 2019

Review: Autism: A New Introduction to Psychological Theory and Current Debate

Finn Gardiner
expectedly.org

 [image: The cover of the book Autism: A New Introduction to Psychological
Theory and Current Debate
, featuring a grid of small illustrations, interrupted
by an orange rectangle in the center-top. Large white text on the rectangle reads,
"Autism".  Smaller light orange text below that reads, "A New Introduction to
Psychological Theory and Current Debate."] 
Introduction

Written from the perspective of British autism researchers with expertise in both theoretical and practical aspects of autism, Sue Fletcher-Watson and Francesca Happé’s Autism: A New Introduction to Psychological Theory and Current Debate is a brief, readable volume about clinical constructions of autism, autistic people’s lived experiences, and philosophical debates about how autism should be approached by professionals and advocates.

While the book is technically a reissue—the original was written back in 1995—the content has been entirely revised to reflect current research, policy, and advocacy. In particular, the authors have made a conscious effort to include autistic people throughout the writing process, including sections written by autistic advocates after every chapter. Fletcher-Watson and Happé do not focus solely on the inclusion of autistic people within society at large; they also discuss the ways in which autism intersects with other forms of marginalisation or oppression, including LGBTQ identity and race. While autism and intersectionality are not the specific focus of the book, it is still relieving to see the authors address autism, and disability more generally, within a framework that takes into account our complex, multilayered lives. This was particularly heartening for me to see, since I myself live at the intersection of autism, queerness and blackness that sometimes causes me to feel isolated from the general population. Far too often, researchers treat autism as an atomised phenomenon that is utterly deracinated from the rest of people’s lives, even though absolutely nobody has a single-issue life, autistic or not. People are complex and have lives that are entwined with others’ complexities.

Contents 

The authors start with a summary of historical constructions of autism, primarily those of Hans Asperger, Leo Kanner, Uta Frith, and Lorna Wing. They then juxtapose these historical models of autism with more recent ones created by autistic advocates like Jim Sinclair, who reconceptualise autism as a disability under the social model, rather than a deficit inherent to the individual that the medical model often promotes. After these historical summaries, Fletcher-Watson and Happé detail current scientific research about biological and behavioural representations of autism, including prevalence, diagnoses, lifespan development, and neuroscientific findings.

When they transition from facts to hypothetical constructs, Fletcher-Watson and Happé describe what makes a good theory: concrete predictions, causality, interpretations of the evidence, explanations of the patterns of characteristics among autistic people, alignment with empirical science, and input from autistic people ourselves throughout the process. Afterwards, they introduce “primary deficit” models of autism and their offshoots: interpretations of autism that see it as wholly negative and suggest a singular cause for the constellation of autistic traits. Fletcher-Watson and Happé focus primarily on the Theory of Mind model, including Simon Baron-Cohen’s empathising/systemising construct, in which autistic people have a core difficulty with perceiving others’ states of mind. Similar deficit models include the idea of “weak central coherence,” or autistic people’s difficulty generalising from specific instances.

The authors are careful to mention that these deficit-centric theories have shown to be inconclusive in empirical research and have been repeatedly called into question by autistic people. They explicitly note that Baron-Cohen’s idea that autistic people exhibit “reduced empathy” is a harmful, dehumanising idea that “betrays a significant lack of empathy on the part of the non-autistic observer” (Fletcher-Watson & Happé, 2019, p. 130). Fletcher-Watson and Happé counter these deficit-centric models with explanations that treat autism as a complex combination of advantages and disadvantages. For example, developmental trajectory models propose that autism arises through atypical development over the lifespan, similar to that of the value-neutral “asynchronous development” model used in gifted-education circles.

The authors conclude by noting that no one cognitive, social, or experiential model can fully capture the differences between autistic and non-autistic people, that evidence-based interventions should be focused on quality of life, rather than “curing” autistic people, and that researchers should take into account the societal impact of autism research when conducting studies.

Coda

Fletcher-Watson and Happé have provided a strong antidote to the gloom-and-doom, causation- and normalisation-focused autism research field in this roughly 200-page volume. The difference between this book and other academic autism books also reflects significant cultural differences in international autism-research priorities. As researchers based in the United Kingdom, Fletcher-Watson and Happé exemplify the massive gulf between British approaches to clinical autism research and their American counterparts. While some researchers in the US have started moving towards incorporating autistic people’s voices, focusing on quality of life, and drawing on the social model, most of them still adhere strictly to a deficit model of autism that focuses on causation and treatment.

For example, the recent Assessment of Autism Spectrum Disorder: Critical Issues in Clinical, Forensic, and School Settings  (Kroncke et al, 2016) and the Essential Clinical Guide to Understanding and Treating Autism (Volkmar & Wiesner, 2017), both written or edited by American autism researchers, use a traditional deficit model that does not incorporate the views of autistic people. Some of these authors are so disconnected from our community that they claim that we generally prefer “people with autism,” and that “autistic” is an outdated term. If they had included autistic voices or read articles by autistic people at any point in their research, it’s less likely that they would make such a statement. This false claim is a reflection of epistemic injustice against autistic people, or the idea that we’re less credible because of who we are. Autism, on the other hand, weaves the insights and experiences of autistic people throughout the book. While it is not perfect—no book is—the difference between this book and the other two I mentioned is easy to appreciate.

American autism researchers should abandon the “not invented here” syndrome and draw from international literature on autism that places our voices at the forefront. Fletcher-Watson and Happé have provided this groundwork through their thoughtful, even-handed treatment of autism, its theoretical constructions, and autistic people’s experiences.