It’s the International Day of Disabled Persons, and I don’t know what to say anymore. I was hoping to write something far more professional – but this day doesn’t feel like it’s ours anymore.
I’ve spent most of the day thinking about what precisely to talk about today in regard to autism and disability. I could use this time to talk about how media representation of autistic people is consistently poor, how it’s a symptom of the consistently poor representation of disabled people within the media. I could talk about how multiply-disabled people still find it hard to find their place within the autistic movement, how we’re still pretty dominated by white, cis-gender, male, straight and able individuals outside of social media. I could talk about how we are still forced to ‘debate’ whether autism, and other neurodivergent conditions, are in fact disabilities, or how we’re still bogged down in this needless conflict over person-first and identity-first language, when our views across the community are clear.
But I’ll do all of those throughout the month. Today, I’m going to take this day, tear it apart and put it back together.
We’re talked about but aren’t given the chance to speak. Businesses flash their purple emblems and their Disability Confident labels, whilst we can’t find work with them and they refuse to develop policies and implement support that actually allows disabled people to be a part of their workplace. Governments promote this day and show support our causes as they cut welfare and support. Charities laud this day whilst they put children like us in solitary units, forcing families apart and destroying our physical and mental well-being. Parents still want to cure those who do not want fixing, putting us through medically sanctioned torture in order to make us “normal” to them.
I recently had a conversation with a close friend about business events like “Purple Tuesdays” and “Autism Hours”. How, to me, they feel patronising and that it makes disabled people feel like they only exist for one day to these places. How autistic people and other neurodivergent people feel they’re allowed to shop by abled people for an hour every so often. How it’s another example of how our needs are only met when it’s convenient.
How this is an example of how we’re often treated in education – if funding isn’t there, if we’re doing academically okay, we won’t find support. How documents supporting educational support can be so easily taken away from disabled and neurodivergent young people. How this is a cruel way to make us realise that this is the life we’ll live, and how whether it’s an EHCP as a child, PIP as an adult, pensions as we get older, we’ve got to constantly fight just to have our needs recognised, never mind actually supported.
How do we feel comfortable supporting an international day of disabled people when people can’t even say “disabled”, or when “autistic” is a dirty word, a slur used across the board online and in public? We have to crowdfund to get access to materials that we need to survive – and people think lighting up purple is enough?
I’m multiply-disabled. For me that includes being autistic amongst other things. Today doesn’t feel like my day any more. I want to see and support disabled people, not companies with purple t-shirts. I want to see access improvements across the board. I want to see autism recognised as something acceptable globally. I want to discuss autism as something that’s more than white – because it is overwhelmingly white people like myself leading these conversations, and I recognise that.
This day is about us – our rights, our experiences. Outside of social media, it doesn’t feel anything like that. We’re an amazing bunch, and we exist every other day of the year.
I want any autistic and/or disabled person to use this post to promote themselves in any way possible. Tweet us (@AutisticUK) a link to your work or what you like to do. Join our Facebook group (Neurodiverse UK) and share your story on accessing benefits or accommodations. Email us (firstname.lastname@example.org) to send us a blog post for our web site to discuss disability and autism. We want this to be your space; your network. We want to promote you.
This is a statement regarding the National Autistic Society’s decision to remove information from Mermaids, a trans youth support network, from their website. This also discusses their decision to reinstate it after mass objection online. This occurred over the week commencing 01/10/2018.
We are delighted to be able to bring to you our exclusive interview with Steve Silberman, the author of NeuroTribes!
If you wish to purchase NeuroTribes, it is available on Amazon.co.uk. Just click here!
Without any further ado, let’s dive into the questions:
AUK: What led you initially to decide to write about autism and its history?
Steve Silberman: I tell the whole story in great detail in the introduction to NeuroTribes, but here’s a short version. In 2001, I wrote one of the first articles about autism in high-tech communities for Wired magazine, called “The Geek Syndrome.” I wrote it when the hysteria about vaccines was at its height, but instead I focused on genetics, and on the notion that places like Silicon Valley might offer social and romantic opportunities for people with autistic traits that had never before existed in history, which was contributing to an increase in the prevalence of autism.
Because the article came out right after 9/11, I assumed it would be overlooked and forgotten, but instead, the opposite happened. I got emails about that article nearly every week for at least ten years. These emails mostly came from autistic people who recognized themselves in my writing, and from the parents and relatives of autistic kids. Most of it had to do with lack of access to basic services for autistic people and their families – long waiting lists for diagnosis, lack of employment and housing, lack of health care, lack of transition programs.
Meanwhile, the media was perseverating on vaccines, because the rise in the estimated prevalence of autism that began in the early 1990s had never been explained. It was clear that the concerns of the media and the concerns of the people on the front lines of autism – that is, autistic people and their families – had drifted really far apart, and at the nut of it was this unexplained apparent rise in autism prevalence. As a science journalist, I had the gut feeling that something had gone wrong with our understanding of autism history somewhere, so I set out to find it. That’s how I decided to write NeuroTribes.
AUK: Were you surprised to win the Samuel Johnson Prize in 2015 and be propelled into the position of Autism Guru and advocate for Autistic Rights?
Steve Silberman: Heh. Yes, I was completely surprised to win the Samuel Johnson Prize. All the finalists were asked to make videos about their books, so you had footage of Emma Sky, author of The Unravelling, running heroically through flaming landscapes in Iraq, and films of Robert MacFarlane, author of an exquisitely written book called Landmarks, striding through the forest, looking like a handsome ginger Thoreau – and then you had chubby me, babbling away in a bookstore in San Francisco that turned out to be amazingly noisy because mums with screaming babies kept coming in, ignoring the “QUIET PLEASE – FILMING IN PROGRESS” sign. I figured my only prize would be a trip to London – which I would have been very grateful for! – and that would be the end of that. But when it became clear at the ceremony that NeuroTribes was the winner, I wept. The previous winner, Helen Macdonald, author of the beautiful memoir H is for Hawk, sweetly whispered in my ear, “You’re going to have a very busy year.” I wish my father Donald, an English professor who taught Samuel Johnson’s work, had lived long enough to see me win the prize.
I don’t consider myself an “Autism Guru” at all. I’m an autism scholar and historian. That said, I’ve made a few friends over the years who I consider my personal autistic gurus – people who really helped me understand how autism feels from the inside. I’ve also met other neurotypical allies who helped me understand the trajectory of the research across the decades. You know who you are out there, and I’m in your debt.
Becoming an ally myself just felt like a natural outgrowth of my research. Back in 2001, when I wrote “The Geek Syndrome,” I was still looking at autism primarily through the lens of the medical model, but even then I started to ask questions about some of the things that clinicians were telling me. Then when I took the full plunge into history for NeuroTribes – which made clear to me how much suffering had been inflicted on autistic people over the decades because of bogus theories of autism causation or very limited ideas of what people on the spectrum are capable of — adopting the perspective of the social model of disability felt like the morally right thing to do. The fact that I’m gay, and that my identity had been considered a psychological disorder by the medical establishment up until the 1970s when I was in high school, undoubtedly hastened this evolution in me.
AUK: You recently took part in the filming of the Chris Packham Documentary ‘Aspergers and Me’ for the BBC. What was your favourite memory of the time you spent with Chris?
Steve Silberman: Let me just say up front, Chris is the coolest – brilliant, unpretentious, cheeky, gorgeous, observant, a font of knowledge about the natural world, and truly hip. We had a marvellous afternoon driving around Silicon Valley, talking about autism and neurodiversity when the camera was on, and about seeing punk bands back in day and other fun stuff when the camera was off. But one of my favourite things happened after we stopped filming, when we stopped for lunch.
Suddenly, right in front of our table, a robin fell out of the sky, hit the sidewalk hard, and started thrashing around. Normally I might such a thing happen and think, “Oh, how sad,” and just try to forget it, feeling that there was no way I could help. But Chris immediately jumped to his feet, cradled the robin, groomed it confidently, and moved it from the sidewalk to a patch of grass where it would be safe. As he did these things, a crowd of girls walking home from school collected around Chris on the sidewalk, astonished. It was as if Superman had appeared just in the nick of time to save the bird. It was a beautiful thing to witness.
AUK: What does the word “disability” mean to you, and do you consider autism to be a disability?
Steve Silberman: One of the best definitions of the word “disability” is that it describes a mismatch between the amount of support a person needs from their environment and the environment they’re in. If you live in a wheelchair in a town with no kerb cuts in the sidewalk, no accessible public transit, and no accessible classrooms, bathrooms, stores, and restaurants, you’re highly disabled — but if your town has these things, you can get around quite well. In other words, disability is not located solely in the person; it describes a relationship between the person and society.
But it’s important to acknowledge that all forms of disability cannot be eliminated, even through remediation. Autism is certainly a disability in neurotypical society. In autistic spaces like Autreat that I described in my book – where the environment is created by and designed for people with atypical neurologies – I got to see autistic people be much less stressed out, much less in edge-of-panic mode, just hanging out with other members of their tribe. These included non-verbal autistic people and those usually described as ”low functioning,” though I avoid the use of functioning labels myself. When autistic people are allowed to go with the flow and stim to their heart’s content – or even to rock and wail – without being judged by neurotypical observers, they’re functioning in a way that‘s natural to them. At the same time, however, my autistic friends tell me they would still have issues with executive functioning and anxiety, even in a highly supported environment.
Because society has tended to view autism as a psychiatric disorder, a distinctive aberration of modern times, or a mysterious plague, it’s still early in the development of accommodations for cognitive disabilities, whether it’s autism, dyslexia, or ADHD. I think autism is best understood as a relatively common cognitive disability, and most of the research devoted to ensuring success for autistic people, particularly in adulthood, is yet to be done.
AUK: What benefits do you think autistic and other neurodivergent people bring to the rest of society?
Steve Silberman; People with autistic traits helped us get to the moon, built a free global amateur radio network that anticipated the Internet, predicted the existence of antimatter, and made us feel the exquisite beauty of Bach — and that’s just a few random examples from one category of neurodivergence that I happened to run across for my book. If you think of how many major cultural advancements have been made by people who were bipolar, schizotypal, or chronically depressed, you start to realise that neurodiversity is not just about the contributions of individual geniuses, but about the whole texture of human culture. How do we treat the people who are working with us, but who may not think like us, on the grand project of advancing human culture? That may be the essential question of the early 21st Century.
AUK: Can you tell us your favourite story about your hero and former teacher, poet Allen Ginsberg?
Steve Silberman: I have a lot of them, but here’s one I don’t think I’ve ever told in public before. Back in the 1980s, I spent a couple of days with Allen near San Jose in California. He had a round of TV interviews and book-signings scheduled during the day and a huge sold-out reading to do at night. We’d been running around all afternoon and I felt exhausted, so when we got back to his hotel room, I flopped down on his bed and groaned aloud. Allen – who was 31 years older than me and in his 60s by that point – looked down at me with a pitiful look and said, “Oh, are you gonna faint or something?” It was a little harsh, but he made his point and it stuck with me. Since then, I’ve tried not to drag around, feeling sorry for myself. There’s work to be done!
AUK: Do you have any plans to write further books about other areas of autism?
Steve Silberman: I don’t think so, though I’m sure I’ll write articles here and there. I made my contribution. Autistic people should be leading the conversation.
AUK: What, in your opinion, would be the single most effective change that society, professionals or parents/carers could make to improve the lives of autistic people?
Steve Silberman: To change the primary focus of research from “How can we prevent autism?” to “How can we help autistic people and their families lead happier, healthier, and more secure lives?”
AUK: In your opinion, how can parent/professional-led organisations best help with shifting the discourse away from cure talk and towards acceptance and inclusion of autistic people?
Steve Silberman: It has been my pleasure in the course of my travels for NeuroTribes to meet autistic people who have taken leadership positions in parent-professional groups like ASPEN in New Jersey and research organisations like Autistica in the UK. It’s just so obvious that autism organisations benefit from adults on the spectrum helping to set their agendas for the future. Who better knows what autistic people really need to improve the quality of their lives? The invisibility of autistic adults in previous eras has created a huge pool of untapped talent in the world of advocacy, and the autistic qualities of relentlessness and intense focus can come in very handy when you’re trying to effect social change. That’s the way to make your autism organisation more effective: hire autistics in policy-making positions, not just as token spokespeople. We’re long past the time when it’s OK for the societal conversation about autism to unfold behind the backs of autistic people.
From all of us here at Autistic UK, we would like to say a huge thank you to Steve Silberman for giving up some of his time to answer the questions we put to him. We very much appreciate your continuing work, and everything you have done for the Autistic Community. You have been one of our strongest and most steadfast allies, and a giant source of encouragement for so many of us.
Autistic UK would like to place on record our disappointment at the words used in a recent column, published in the Huffington Post.
Autistic UK does not believe that in 2018, it should be acceptable to use Autism as some sort of insult or a way to denigrate and belittle those with whom you disagree. Autistic UK calls upon Mr Meagher to recognise the implications of his words, and to issue a full apology.
We would also encourage those that shared Mr Meagher’s article to acknowledge that this sort of language is not acceptable in modern discourse, and we would be happy to engage with any individuals who would wish to learn how to avoid this happening again in the future.
Additionally, we would also like to extend a formal invitation to Mr Meagher to attend one of our AUK events, so that he can see for himself his stereotype of Autistic people is false, and learn something from this whole experience.