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.)