International Day of Friendship – 30th July 2020

Today is the International Day of Friendship, and to mark to occasion I wanted to write about some of the myths surrounding friendship and Autistic people.

If media and outdated medical opinions are to be believed, Autistic people can’t make friends. We’re aloof, bluntly honest to the point of being rude, don’t like the company of others, and only tolerate people if their presence is of benefit to us. Except the media and medical opinions are complete nonsense, and actively damage our community.

One of the most common reasons parents are given by medics who refuse to give their child an autism diagnosis is, “he/she is too sociable,” or, “but they have friends.” Our social communication differences have somehow become equated with an inability or desire for companionship, and despite Autistic adults protesting this theory, it seems to have stuck. A plethora of adults have been refused diagnosis because they’re able to have romantic relationships and are, heaven forbid, even married!

This assumption has caused deeper wounds for those who are more able to mask their differences or become social chameleons, regardless of the damage it does to their wellbeing. As this typically affects females in higher proportions to males (both trans and cis women and girls), understandably a lot of work has been dedicated by advocates and some professionals into establishing a set of ‘female’ Autistic characteristics due to their under-diagnosis. However, this has meant that those who present as male in clinic have missed diagnosis when it’s possible they would have received one if measured against ‘female’ characteristics.

Those Autistics who do get diagnosed while young – possibly because they are happier alone, or because they have had difficulties making and keeping friends in school – are often placed into therapies or social skills classes which have a primary aim of making the Autistic person change the way they interact with people to meet the needs of non-Autistic people. They’re told, “this is the only way to make friends,” and that their methods of interacting, communicating, and (in many cases) playing are wrong. Being made to follow programmes designed by non-Autistics to get Autistics to ‘fit in’ mean that these Autistics either join the huge numbers of us who mask, or continue to feel isolated while also developing self-esteem and mental health difficulties. Wouldn’t you if you were told the reason you don’t have friends is because who you are is inherently wrong? Remove the focus from social skills classes to helping Autistics find their community – friendships will then naturally bloom and flourish.

Why do the non-Autistics get to be who they are? Why is it okay for other children to be lifted up, told to be proud of being different, and that they can be who they want to be, when the Autistics get the addendum: but not like that? Is it any wonder that by the time we reach adulthood, regardless of when we were diagnosed, most of us have at least one co-occurring mental health condition?

However, it’s not all doom and gloom, for the arrival of social media (and the internet in general) has changed the face of friendship for so many of us. I don’t dispute that there are toxic elements to social media, but for Autistic people – especially those diagnosed late – it’s where we finally find our tribe. There are a huge number of Autistic social groups online. From hashtags on Twitter (#AllAutistics #ActuallyAutistic and #ADHDAutism to begin with) to Facebook groups (Neurodiversity UK, Autism Inclusivity, Autism Late Diagnosis Support and Education are all good starting places), these are places which – often for the first time – Autistic people feel supported and find people they can relate to. For so many of us most of our friends are online, so please don’t assume that we’re being antisocial for looking at our phones.

During the COVID-19 pandemic, many Autistic people have said that they have been able to socialise and keep up with friends more than they did pre-pandemic. Not having to go into the office and/or commute means there’s more mental energy for time with friends, and its online nature (including online quizzes, virtual pubs, and gaming) means that participation is far easier, so they feel more connected. I know I’ve socialised more with some of my non-Autistic ‘mum friends’ far more regularly than I would if it was in person.

When we branch out of the digital realm and meet fellow Autistics in person, we rarely have the same level of awkwardness, anxiety, and misunderstanding as we do when we try to socialise with non-Autistics. This is seemingly at odds with the assumptions non-Autistics have of us which were discussed at the start of this article, and is why Autistics believe that it’s not completely accurate to state that we have social communication difficulties, rather social communication differences. We can often communicate extremely well with others who share our neurotype, regardless of whether or not we speak. We may not always understand what non-Autistic people are trying to communicate, but actually they also don’t understand us. Communication is a two-way street, and of course we’re going to be exhausted by trying to maintain friendships with non-Autistics who expect us to walk a ‘one-way road’ to communicative harmony: at least meet us half-way!

Don’t assume that Autistic people have no desire to make friends. Educate people when they claim that Autistic people cannot make friends. Understand that online friendship and companionship is valid, and can be just as fulfilling (if not more so) than in-person relationships, particularly for Autistics. On this International Day of Friendship, if you are friends with a neurodivergent person, ask yourself: are you making them do all of the work? Are you expecting them to change their communication style without thinking about adapting your own? Do you make assumptions about their abilities, needs and desires based on their neurotype? If so, please consider whether or not you could help your friend further and make life easier for them. And please, at the very least, meet them half-way.

Interview with Chris Bonnello: Author of The Underdogs Series and OWner of Autistic Not Weird

Chris Bonnello holding up copies of the first two Underdogs books

Kat Williams chats to Chris Bonnello, owner of Autistic Not Weird and author of Underdogs about the series and releasing a novel during lockdown. A video of the full conversation can be found at the end of this post, or you can click here to go directly to the video.

 

Kat Williams (A-UK): So, thank you Chris for joining us today. I and the rest of Autistic UK love your work through Autistic Not Weird. I’m also personally a Patreon supporter and I’ve backed both Underdogs and Underdogs: Tooth and Nail.

Chris Bonnello: Thank you.

Kat Williams (A-UK): I was gripped by Underdogs; I read it in a day. Unfortunately, I haven’t had a chance to read Tooth and Nail yet because it’s not been that long since it’s arrived, but it’s next on my reading list and I’m pretty sure it’ll probably be a read in a day job again.

Chris Bonnello: Awesome

Kat Williams (A-UK): It’s exciting. You don’t want to stop because you want to know what’s happening next.

Though many of our followers know who you are there may be a couple who don’t, so could you please tell us a little bit about your background and how you became an Autistic advocate?

Chris Bonnello: I’m Chris Bonnello. I’m a special needs tutor, used to be a primary school teacher, and [I’m an] autism advocate/speaker, writer, novelist and so on. Did I mention I’m Autistic myself? You probably gathered already. [I was] diagnosed with Asperger’s Syndrome in 2011 (January 12th) and in 2015 – having just left mainstream primary school teaching – I decided that there was an awful lot of good that I was not doing by keeping my autism/Asperger’s a secret, so I launched Autistic Not Weird where I could talk about autism from both a personal perspective and a professional perspective and it seems to have taken off a bit.

Kat Williams (A-UK): A little bit! Yes.

Chris Bonnello: I now get to call myself an award winning writer and international speaker and that was not the plan.

Kat Williams (A-UK): It’s a very good place to end up though.

Chris Bonnello: Yeah

Kat Williams (A-UK): It’s not surprising you’ve won awards because your articles are incredibly balanced. You are very empathetic and also sympathetic but also factual. It’s really important to have that balance because we can get caught up in emotions sometimes and maybe skip on the facts and other people are so factual they forget that they’re dealing with people. It’s difficult to get that balance and you do have it.

Chris Bonnello: Oh, thank you.

Kat Williams (A-UK): I believe your first degree was in maths and you teach maths, so what led you to doing a master’s in creative writing?

Chris Bonnello: My first degree was mathematics with education at Newcastle (awesome city) and the plan was always to become a primary school teacher, but I wanted to get a maths degree just in case; it was better than spending four years getting a teaching degree, walking into a classroom and then thinking ‘wait I don’t actually like this.’ So, I got a maths degree, then I got a teaching degree and then I think the decision to start the creative writing master’s was about a month or so before I started Autistic Not Weird. Having just left teaching I was thinking ‘well what am I going to do with my life now? I mean, I’m never going to be a teacher again,’ – as I thought at the time because back then I didn’t realise the huge gulf there is between mainstream teaching and special needs tuition, and how much one of them suited my personality and what I really want to get out of being in education compared to the other.

I’ve been wanting to become a writer or publish a novel ever since I was about thirteen and writing Sonic the Hedgehog fanfiction and I figured, ‘you know what? I’m in my late twenties now, I know that I can write good stuff I just want to take it further and see if a master’s in creative writing takes me anywhere.’ My dissertation piece was a piece called Guerrillas which was this rather ridiculous story I wrote in 2010 as a coping mechanism for being unemployed about a bunch of people hiding in the countryside fighting a massive army of cloned soldiers. I was trying to write a story about the most unwinnable – mathematically unwinnable – war possible and this ridiculous story became my dissertation for my uni degree. A year later a publisher said, ‘actually yes, I like the sound of this.’ A year after that it was published. A few weeks ago, the sequel came out.

Kat Williams (A-UK): It’s no wonder that it was picked up by a publisher because it is absolutely fantastic. There is a bit of a story I remember behind the change in name to Underdog do you want to talk through why that was changed?

Chris Bonnello: It was called Guerrillas because that was the name I came up with in 2010 and back then I believed I’d be the only person who’d ever read it or take it seriously, so I didn’t really need an impressive title. When we started the publication process the publisher said, ‘we’re not quite sure whether Guerrillas is the best title for it.’ They were basically saying what I had been thinking for the last six months to that point, but kind of procrastinating the conversation about because first off, Underdogs is a better title because the characters are Underdogs in just about every sense. In the war sense twelve – well it starts off as twelve and becomes thirteen – thirteen characters hidden in the countryside, untrained in any kind of military stuff, against millions of cloned soldiers: they’re Underdogs in that sense. Eight of them [are] also teenagers who escaped the attack on their special school, so they’re kind of Underdogs in the sense that society pathologically underestimates what they can do. They’re seen as the people who are supposed to not be able to do this that and the other, so it was just a much more suitable title.

One comment that completely solidified the fact that the title needed changing was an Argentinian follower who said, ‘if you call it Guerrillas your story won’t be particularly popular in South America because my country is still recovering from the guerrilla warfare we suffered in the 1970s.’

I thought oh yeah! When people who aren’t me think of guerrilla warfare they think of the Vietcong. People don’t have the sort of positive representation that I want the Underdogs to have.

Kat Williams (A-UK): Underdogs is a more descriptive title for what’s going to be read as well, so I think that it’s definitely a good choice.

Chris Bonnello: You also don’t have to explain to people that you’re not talking about the animals.

Kat Williams (A-UK): Exactly, and that’s also a bonus.

Some people who aren’t familiar with you and the Underdogs series may hear about it and assume it’s going to be mainly introspective narration and autism clichés in the style of books like Curious Incident of the Dog in the Night-Time. How would you describe Underdogs to them? Can you tell us a bit more about the series? But obviously keeping it spoiler free.

Chris Bonnello: The Underdogs series is a dystopian near-future war series where the whole of Britain has been imprisoned in giant walled citadels. They’re under the watchful eye of hundreds of thousands, if not millions, of cloned soldiers and the only people left in the abandoned British countryside trying to fight for these people’s freedom are thirteen people called the Underdogs. And like I said, eight out of these people are teenagers who escaped the attack on Oakenfold Special School, so you’ve got Autistic heroes, dyslexic heroes, heroes with ADHD, anxiety, Down’s Syndrome. You mentioned autism clichés – as an Autistic person myself I’ve always been very mindful about how autism and neurodiversity in general need to be represented in the media because around the time that Underdogs came out, perhaps a few years before, it became the very “in thing” to have a token Autistic character. We had everything from an Autistic Muppet to an Autistic Power Ranger and in some of these cases their autism wasn’t really explored or developed or anything. It’s one thing to have Autistic characters but you’ve got to have meaningful Autistic characters. In fact, the best answer I can give really is comes from the notes from the author at the front of the first book. I’ll read it out:

“The most important fact about autism, dyslexia, or neurodiversity in general, is that each person’s experience is different. No two autistic people (for example) are the same: we are different from each other for the same way that non-Autistic people are.

In recent years we have seen much wider representation of disability and neurodiversity in works of fiction. Much of the time these works are criticised for not representing the entire community, and of course they don’t. It’s impossible to represent a whole population when it consists of individuals.

Therefore, I encourage you to see the Underdogs as characters in their own right, rather than poster children for their conditions, disabilities or differences. Ewan does not represent every teenager with a PDA profile; he represents Ewan. Kate does not represent every Autistic girl with severe anxiety; she represents Kate. Charlie does not represent every boy with ADHD; he represents Charlie.

Humans are individuals in all corners of humanity. The Underdogs are no exception”

Kat Williams (A-UK): Absolutely, and I think that it’s important that people remember that because it is so easy for people to fall into the cliché that is supposed to be allegedly representative of everybody and it’s good that your characters aren’t that. They are full characters; they are multidimensional and that is what a character should be. It’s really refreshing to read that.

What made you write a series of dystopian novels with a full cast of neurodivergent protagonists?

Chris Bonnello: I wouldn’t say a full cast. There are a couple of token neurotypicals in there.

Kat Williams (A-UK): Well, you do have to give them a little bit of space, don’t you?

A lot of the books that you read with neurodivergent characters tend to be self-discovery books or, if they’re written by neurotypical people, they tend to be about a parent who’s having an awful life because of their disabled child and how they’re overcoming adversity. But [Underdogs isn’t] this.

Chris Bonnello: And often the overcoming adversity is basically the disabled character becoming less disabled.

Kat Williams (A-UK): Yes! Which is incredibly frustrating for anybody reading it who happens to be disabled or Autistic or whatever relation they have to the character they’re reading.

So, what made you write those characters in that setting?

Chris Bonnello: A bit of a confession to start off with: the very first draft did not contain any neurodiverse people. Well, okay it did, Jack was blatantly Autistic all the way from the very first draft, but it was a very generic bunch of people in the 2010 draft. After that I started working in a special school and a lot of the teenagers there were strikingly similar to me when I was a teenager, except some had academic learning difficulties. Others didn’t really have learning difficulties they were “just” bullied out of mainstream. The more time I spent in that school (and me being a very active writer at the time as well) the more I came to realise that there’s a huge population here that isn’t represented meaningfully in fiction – or at least is rarely represented. I looked around, saw Guerrillas and I thought: I’ve got an idea!

With a huge, almost ensemble, cast like Guerrillas/Underdogs had I [could] re-write it and make just about all of the characters escapees from an attack on their special school, neurodiverse with a wide range of different neurotypes, and it just worked! And honestly, it is so much better. I call that the moment when the story actually started to become good.

I often say that a character is much more important than plot because you could write the most exciting plotline ever, but if the characters are as dull as ditch water then the readers are not going to care. And it’s almost the other way around. You can write a really dull predictable plot, but if the characters are interesting then the readers will love it.

Kat Williams (A-UK): People want to read characters they can relate to. Even if you’re reading the most fantastical novel set in a world that would never be real you are still reading character that you can see yourself in. When you’re neurodivergent you very often can’t find characters that you relate to, especially when you’re a teenager growing up, figuring out that you are different to a lot of the people around you. I remember when I was a teen I would escape into books because the real world wasn’t the nicest place for me, so books were safer, and I could also predict what was happening in books a lot better than I could predict what was happening in the real world, but it was very rare that I fully related to a character. I’m really glad that people such as yourself are now writing books that teenage me could relate to.

Chris Bonnello: There’s another book I’ve read recently just released this year. It’s called The Infinite by Patience Agbabi. She’s generally a poet by trade, this is her first novel and that was really refreshing as well. It’s a time travelling adventure in a world where people born on 29th February have this ability to leap through time

Kat Williams (A-UK): That’s so cool!

Chris Bonnello: The main character is not only a leaper born on February 29th but also Autistic. And not only Autistic but far from being the stereotypical white, male, middle class, Autistic maths genius – and I say this as a stereotypical white, middle class, maths genius Autistic guy – the main character in The Infinite (which is about to become a series as well) is a twelve year old black Autistic girl of Nigerian descent, who lives with grandma round the back of an industrial estate, who travels through time and solves crimes.

Kat Williams (A-UK): That sounds incredible!

Chris Bonnello: It is quite awesome

Kat Williams (A-UK): I am definitely going to buy that once we’ve finished this chat because that sounds brilliant! And thank you for bringing it to mine, and everyone else’s, attention.

Chris Bonnello: No problem

Kat Williams (A-UK): Becoming topical right now: How has the Coronavirus pandemic affected the sales of Tooth and Nail because it’s been released in the middle of this pandemic?

Chris Bonnello: I could keep a stiff upper lip and say it could have been worse, although a huge amount of the books I sell are at conferences which just aren’t happening anymore – I’m hoping we’ll get some in the autumn. I managed to keep my head above the water in terms of self-esteem by saying, ‘it’s not like you’re selling bananas that you’ve got to sell by a certain date. You’ve not *not* sold these books you’re just delaying the selling of these books.’ It’s a bit more problematic though when you ask the publisher, ‘are we still on course for Underdogs 3?’ And the reply comes, ‘in principle yes we would love to publish it. Ultimately though, the commissioning team will make a decision based on book sales over the next three months.’ I’m thinking, hmm.

Kat Williams (A-UK): What can we as supporters do to help make books three and four a reality? We’re halfway through a series! We can’t allow the next couple of books to not happen; we need to know how this ends. So, what can we do to help?

Chris Bonnello: Other than the really obvious answer of buy the books, which is such a predictable answer, writing reviews on Amazon or Goodreads to encourage other people to do the same, and sharing the news – building up some hype about the series.

Call up your library, ask them, ‘do you have the Underdogs series by Chris Bonnello?’ And, ‘why not?’

One thing I would love to happen is kicking up some kind of fuss – I have my own personal name for it the Fifty Shades of Grey effect. Remember a few years ago where everyone was reading Fifty Shades of Grey? You ask all of these people, ‘why are you reading that book?’ Just about none of them would have said, ‘I’m just kind of into slightly adjusted erotic Twilight fanfiction.’ And no one’s going to say, ‘oh, BDSM in literature is just my thing.’ Almost everyone reading Fifty Shades of Grey told me that they’re reading it just to see what the fuss is about. I would love to have that kind of hype around Underdogs. If everyone in the world buys Underdogs ‘just to see what the fuss is about,’ that would be amazing! So, kick up some hype about it.

Kat Williams (A-UK): Yep, absolutely. You mentioned libraries which is a good point, but also schools are always looking for the next book to add to their library. I know their budgets have been cut somewhat but a lot of the books they have are incredibly dated so maybe even gifting a book to your local school so the teachers can have a read and they get hooked and then they want the pupils to read it.

Chris Bonnello: There were whispers a little while ago about whether or not Underdogs could get on the New Zealand English curriculum. I’ve not heard anything about it since but there were at least whispers about it.

Kat Williams (A-UK): In Wales we’re getting a new curriculum and teachers have [allegedly] got more scope for setting their own set texts and things like that, so it’s probably worth speaking to a few Welsh English teachers.

Chris Bonnello: Awesome

Kat Williams (A-UK): I think it would be a great book for kids to study. Particularly in mainstream schools actually because I think that if they see neurodivergent children as the heroes they will treat the neurodivergent pupils in the class better.

Chris Bonnello: You’d hope so. Or at least not automatically think, ‘oh you’re not capable of anything.’

Kat Williams (A-UK): Well, exactly. I think that’s something a lot of teachers should read as well. You know, especially because characters (I’m not going to give anything away) the characters do have the typical spiky profiles that a lot of us have and I think that people can equate difficulties in some areas with having difficulties in all areas and we know that’s not the case and these books demonstrate that that’s not the case.

A question that can be a little contentious – I’ve seen it sparking debate on the internet – do you think that publishing deals for books containing neurodivergent characters should be given to neurodivergent writers over neurotypical writers? Assuming that they are of the same quality and there’s one deal, do you think the neurodivergent author should be prioritised?

Chris Bonnello: I can see why that’s a contentious question. I suppose my answer to that is first and foremost Autistic people need to be leading the autism discussion. That is not to say that’s to the exclusion of absolutely everyone else. You mentioned earlier about me trying to have a balanced attitude towards autism. Occasionally I make myself a bit unpopular by saying actually yes non-Autistic parents should have at least some kind of voice in the discussion because they do have experience in this area. That is not to say that they should lead the conversation, but to say that non-Autistic people should be entirely excluded I think that’s possibly taking it too far.

In terms of publishing deals, I would love to say a simple yes to your question that neurodiverse authors should be the ones to write neurodiverse fiction. Pragmatically I know that the publishing world just simply isn’t like that. You don’t get published because you’re a neurodiverse writer. You don’t even get published because you’re a good writer. You get published because your stuff is marketable. That’s a fairly painful realisation. As an unpublished writer I knew that some of the stuff I was writing was probably better than some of the stuff that was out there. It was certainly better than Fifty Shades of Grey. But now as a published writer, I’m equally uncomfortable at the fact that there’s loads of unpublished stuff out there that is better than mine, it’s just what’s marketable.

The solution to this in my mind is why don’t we shape the narrative around autism and neurodiversity so that it becomes more marketable for stuff to be published by Autistic/neurodiverse writers? I think we are heading in the right direction. There’s Diary of a Young Naturalist which has just come out by a sixteen year old Autistic author, there’s Chris Packham’s work, there’s just so much that’s beginning to come out that you just wouldn’t have seen ten years ago. I think we’re heading in that right direction.

Kat Williams (A-UK): It’s good, and you’re right. It is about whether something is marketable, but that also means that you have to be able to sell your idea to a publisher and Autistic people (and I know I’m generalising which is something that we don’t really like, but I think that it happens to enough of us) we’re not the best at marketing ourselves. We can often struggle to say, ‘hey I’ve done this and I’ve done a really good job,’ because we’ve spent our lives being told that what we’ve done isn’t good enough, or is not quite right, or is different and different is always shrouded in ‘different is bad,’ so I think that we do need to be able to sell ourselves in order for our things to become marketable.

You are right, getting the narrative changed is going to definitely increase the number of us that are able to be published and get our stories out there, because I’m sure there are loads of Autistic and otherwise neurodivergent writers that are producing brilliant work but don’t even know where to start.

Chris Bonnello: I occasionally get email from some asking, ‘I want to become a published author where on earth do I begin?’

I think one reason why there’s so many Autistic writers is because it’s good escapism to write. Similar to why I was writing the Underdogs books in the first place (or the Guerrillas books back then): when the real world doesn’t give you much control or influence – and everyone needs a sense of control, not in a controlling manipulative kind of way, but you want to have some kind of autonomy over where your life is going – in a world where that’s not often afforded to Autistic people, it’s so therapeutic to create your own world where actually yes, you do get to decide the rules. You do get to decide what happens. You have full autonomy over what goes on in this universe of yours.

Kat Williams (A-UK): It’s strange because it still seems that non-Autistic people equate being Autistic with a lack of creativity and imagination. While we know this is untrue do you think it’s more difficult to sell yourself as an Autistic creative writer with that bias?

Chris Bonnello: When I give advice – and this doesn’t sound like I’m answering the question but I’m getting there – when people ask me, ‘I’m trying to get a job, should I let the interviewer know I’m Autistic?’ I ask, ‘okay, why?’ They say, ‘I don’t know, just so they know.’ Strategically, why do you want them to know?

The general strategy I have is tell the interviewer that you’re Autistic if you think it’ll make you more likely to get the job rather than less likely to get the job. For example, I’ve only dropped the ‘A-bomb’ as I called it at the time once during a job interview. I actually ended up getting that job and I’m notoriously terrible at job interviews. I was very aware that I wasn’t talking very fluently in the interview and I thought, you know what? Just for the sake of experiment we’re going to see what happens here. I told them I’m Autistic, which means I’ve got the perfect kind of brain for this job. I’ll be able to do this, that, and the other, but one thing that’s not in my skill set is answering interview questions. So, if you would hire me you’d be getting this kind of person but please don’t take a lack of fluency here as a sign that I wouldn’t be good at the job. Turns out they did give me the job. Now, had I said, ‘yeah I’m Autistic which means I can’t do this, I can’t do that, but I’ll be a good employee really…’

It’s a similar situation here. If you believe that telling a publisher about you being Autistic makes them more likely to accept you – and again it’s a very difficult thing to call because publishing is made up of individuals anyway, maybe it’ll work maybe it won’t, it depends on the person reading it. But if you think generally speaking it will make you more likely to be accepted then [tell them], if not then [don’t tell them] it’s none of their business.

Kat Williams (A-UK): That’s a really good point. I think that if you’re writing about autism or Autistic characters then it could be beneficial but you are right, it isn’t really their business so people don’t have to disclose if they don’t want to.

I know that you have finished writing the third book…

Chris Bonnello: And the fourth

Kat Williams (A-UK): And the fourth! I thought you had as well.

Chris Bonnello: One of the only good things that’s come out of this lockdown [is that] I’ve finished the final book in the Underdogs series. It took me 10 years 4 months! But I finished what I started.

Kat Williams (A-UK): Which is incredible! I am in awe of anybody who can have the focus and the drive to get it done.

Do you have any plans to write any other books? Be them fiction or non-fiction? Or are you going to have a bit of a break and think about it?

Chris Bonnello: The thought of a break from writing doesn’t really appeal to me. The more I think about the Underdogs universe, the more ideas I have about it. Some of them I don’t want to say during an interview because then it’s on record and I might be committed to it, but one thing that I’m quite open about is after the fourth in the series presumably/hopefully gets published is a short story anthology called Tales of the Underdogs where each of the thirteen major characters gets their own short story. Three of them are already written, they were published on Unbound the publisher’s website as thank you presents for the people who pre-ordered the second one and when the (assuming that happens) third one goes to its crowd funding stage I’ll be presumably doing the same thing again with another three short stories from another three of the Underdogs’ perspectives. It would be nice at the end to publish a short story anthology so that people have more stuff to read about the underdogs because, let’s be honest, like I said earlier I could write the Underdogs series with the most exciting plot line or the most boring plot line as possible it doesn’t matter as much as people might think because people just generally read it for the characters. Well yeah, and the action,  but the main thing is the characters.

Kat Williams (A-UK): They are brilliant characters.

Do you have any advice for aspiring Autistic creative writers out there? Anything like set processes? A certain number of words written a day. Do you have a plan on a writing day? Or do you just sit down and let it flow (or not) depending on the day?

Chris Bonnello: It probably sounds like a cheating answer when I say find out what works for you and do it, but it honestly is the best advice I could give.

Ten years ago, my method was to walk down to the village, have a pub lunch whilst writing a story on the laptop. These days the best way of doing these things now I’ve not only got a job, I’ve got about four jobs, these days one way that I try to stave off work related stress is by deciding that once I’ve had my dinner it is Underdogs time. I don’t have to answer any emails, or perform any kind of responsibilities I just sit down if I do anything it’s writing or editing Underdogs. At different times of my life different methods worked for me.

The most important bit of advice that I give to Autistic people, and people in general when it comes to creative writing is write what you love, don’t write what you think will be marketable. By way of example, the original Guerrillas was not in the least bit marketable and I did not write it with the intention of publishing it because it’s ridiculous! Who on earth is going to publish something like that? It’s seriously unrecognisable the series as it stands now compared to the first draft. That was okay. You don’t need to publish stuff in order for your creativity to be valid. You don’t even have to be a particularly good writer for your stuff to be valid. But let’s say that you actually do want to publish and you do actually want a career in writing. Even then, write what you love don’t write for the market.

Remember when the Twilight series came out? Suddenly there was a whole explosion of vampire romance fiction and a bunch of other stuff got published that was kind of in a similar vein. That was a case of good timing. The ones that were published were very unlikely to be the ones that were copying or mimicking the Twilight series. They just happened to be from authors who had also written paranormal romance and it happened to be marketable. The people who read Twilight and then immediately began to write their own vampire fiction because they thought, ‘ooh, I think that’s marketable now,’ they would have got rejected by publishers because it takes about a year or two years to publish a book and by then the market has moved on.

All of those people who wrote knock off Twilight books (with the exception of Fifty Shades of Grey but again, that’s a different genre) those who tried to mimic what was already out there to follow the market would have ended up submitting their vampire romance around the time when suddenly teenagers fighting to death in The Hunger Games became the marketable thing. Then people writing Hunger Games knock offs started submitting their books to publishers around the time when The Hunger Games was done and they were looking for the next big thing.

The market moves too fast for any writer to really keep up with. Write your stuff, write what you love, and if you’re – I don’t want to use the word lucky, as Ewan repeatedly says in the Underdogs books, it’s never luck – but if you are fortunate enough the stuff that you’ve written may be in demand one year where it wasn’t in demand a previous year. I’m not sure if that sounds particularly motivating or not but it is entirely true unless you want to go down the self-publishing route which is fair enough. Lots of people do that, lots of people make a living from it. But if you want a traditionally published book write what you love and make it as good as you possibly can. Then comes the marketing thing which is a completely different skill and one which I don’t profess to have any expertise in.

Kat Williams (A-UK): Which is fair enough. I know a couple of authors and they also say just because you’ve received one rejection it doesn’t mean that the next one will be but you tend to get more rejections than acceptances even if your stuff’s really good because different publishers publish different types of work. You also need to research what they are putting out there because that is just as important.

Chris Bonnello: Just adding to the point you are making, writing a good book and getting a good book published are two entirely different skills. I knew enough about it to know that if you don’t know the name of the person you’re submitting to and write, ‘Dear Sir/Madam’ or ‘Dear Submissions Team’ then they’re not going to be particularly keen.

Let’s say that you’re Mrs Jones and you are submissions manager for John Smith’s publishing company, John Smith being its founder who died in 1890-something-or-other, and you get a letter addressed to ‘Dear Mr John Smith’. You’ll think, ‘yeah you’ve not really researched this, have you?’ If you specifically say no Fantasy or Sci-Fi and then someone submits Fantasy or Sci-Fi, ‘just in case because it’s so good that they’ll have to say yes to me…’ Follow the submission guidelines to the letter. Show that you have some basic respect for the people who you want to publish your book and spend years working on it.

Kat Williams (A-UK): Very good advice there.

A final question. If you could change one thing to improve the lives of Autistic people worldwide, what would it be? A difficult question, I know.

Chris Bonnello: A million pounds in the bank account of every Autistic person. Some of it to be used as some kind of fund to raise actual meaningful awareness of autism and having a nice solid pro-autism promotional campaign which will lead to a reduction in the unemployment rate, a reduction in abuse in residential homes and so on, all these other major problems that exist with Autistic people. It’s not a particularly realistic answer, of course, but it’s a difficult thing to answer because there’s so many things to fix.

One thing realistically that we can try and do as I said earlier in the interview, try and change the narrative about autism and help change direction so that people a) get to see the positives that exist within Autistic brains and b) have a meaningful understanding of the challenges we face and c) make sure that we are being defined by our strengths rather than by our weaknesses. Having weaknesses etc understood, but not being the defining factor in our existence.

Other than a million pounds in every Autistic bank account doing us a lot of favours, lets face it, most of us would just spend the million pounds on our special interests (we’d be right to do so as well). But whereas you can’t solve every problem by throwing money at it, having some sort of massively well-funded campaign or drive to raise meaningful awareness of how valuable, worthy and valid Autistic people are can only be a good thing, right?

Kat Williams (A-UK): Absolutely, and a lot of the answers to that question rely on funding so your answer could well be the thing that solves all the problems because that would be the money to fix all of the other ideas.

Chris Bonnello: Fun fact: I once lost a job in a special school along with half the staff because they couldn’t afford to pay us. The school found itself half a million pounds in deficit; officially nobody knows how. Then they came up with this ‘forward thinking initiative’ that was to ‘raise standards’ or some rubbish like that which just happened to involve doubling the class sizes and halving the staff. Some of us expressed concern that very fast teenagers with profound disabilities and literally no sense of danger, ‘oh, they’ll be fine with less than half the adults around and their attention being divided by twice as many students.’ When speaking to senior management, ‘ooh, it’s just for the sake of data points… oops I’m sorry, I mean students.’ So I have some fairly personal experience about what happens to really good schools when the money runs out. More importantly, what happens to vulnerable people when the money isn’t there to support them.

So, it sounds like a very shallow answer: just give a million pounds to every Autistic person. Yeah it was a very tongue in cheek semi-humorous answer. But let’s be honest: money does talk.

Kat Williams (A-UK): It does. It makes the world go round, as they say.

Chris Bonnello: It shouldn’t, but it does.

Kat Williams (A-UK): It does. Well, thank you so much, Chris.

 Chris Bonnello: Thank you for having me.

Kat Williams (A-UK): It’s been lovely talking to you

Chris Bonnello: Likewise

Kat Williams (A-UK): And everybody, if you don’t have the books already then please buy Underdogs and Underdogs: Tooth and Nail. You can buy them on Amazon, I’m sure you can buy them from other book sellers.

Chris Bonnello: Yeah, Waterstones, lots of places.

Kat Williams (A-UK): During lockdown Amazon is possibly the easiest place for a lot of people, but other book sellers are available. Thank you so much for your time and I really hope that Unbound do go ahead with publishing books three and four. Thank you.

You can watch the conversation in full here:

A critique of the use of Applied Behavioural Analysis (ABA)

Posted with permission from Dr. Damian Milton, originally written as the Appendix for the Labour Party Autism / Neurodiversity Manifesto Steering Group, 2018

Content Warning: this article discusses depictions of torture and abuse.

“…right from the start, from the time someone came up with the word
‘autism’, the condition has been judged from the outside, by its appearances,
and not from the inside according to how it is experienced.” (Williams, 1996:
14).

This report looks into the commonplace implementation of Applied
Behaviour Analysis (ABA) and Positive Behavioural Support (PBS), criticisms of
these approaches, and why they are not usually supported by neurodivergent
communities, before concluding with some recommendations for future practices.

ABA can be defined as the application of techniques based upon the
philosophy of radical behaviourism (pioneered by B.F. Skinner and others). ABA
seeks to utilise these theories of learning in order to alter behaviour.
Contemporary theory and practice, despite moving beyond the ‘methodological
behaviourism’ that prioritised behaviour modification, to the use of
‘functional assessments’ of the ‘antecedents, behaviour, and consequences’ of
behaviour within a context (or ABC method), still primarily focuses on reducing
behaviour deemed ‘aberrant’ or ‘inappropriate’ and increasing behaviour deemed
socially ‘valid’ and ‘acceptable’. By following the principles of radical
behaviourism, thoughts and emotions are treated as behaviours operating in the
same ways as observable actions (Research Autism, 2018). Such a philosophy is
criticised by other schools of Psychology or Philosophy of Mind (Stanford
Encyclopedia of Philosophy, 2015). Proponents of ABA suggest that it is a
‘natural science’ of behaviour, rather than a ‘social science’ dependent on
hypothetical constructs.

“Behaviour Analysts are not distracted by the many different theories of
the causes of autism.” (childautism.org.uk, 2018).

Critics would suggest that rather than being an objective natural
science however, it rather uses a flawed set of conceptual concepts at the
expense of excluded concepts that have developed through other disciplines and
perspectives. Despite being a general theory and practice, it is often
incorrectly assumed to be a specific intervention used with autistic people (by
both some proponents and critics). The history of ABA is not without
significant controversy outside of working with autistic people though. One of
the pioneers of using ABA to make autistic people ‘indistinguishable from their
peers’ was Ivar Lovaas who also utilised the method as a form of ‘conversion
therapy’ for transgender children:

“Rekers and Lovaas conducted the treatment in response to the parents’
concerns not the child’s. Furthermore, they challenged all four of the reasons
Rekers and Lovaas stated for going forward with the treatment, including the
need to relieve the boy’s suffering, the idea that the “problems” would
continue into adulthood, that an early intervention may be the only treatment
that worked, and that “the parents were becoming alarmed.”” (Wilhite, 2015).

These remarks are eerily familiar with regard to the reasons given as to
why ABA is often administered upon neurodivergent people. In the UK, a somewhat
less extreme version of ABA has taken shape in the form of Positive Behaviour
Support (PBS):
“Another way to decide what to teach a child with autism is to understand
typical child development. We should ask what key developmental skills the
child has already developed, and what they need to learn next. The statutory
curriculum in the countries of the UK also tells us what children should learn.
Then there are pivotal behaviours that would help further development: teaching
communication, social skills, daily living or academic skills that can support
longer-term independence and choices.” (Hastings, 2013).

Despite contemporary behaviourist theorists such as Hastings (2013) who
favour PBS claiming to use a non-normalising social model approach, it is clear
from the above passage that a normative approach to child development and
education is being utilised. Such a view can be contrasted with autistic and
wider neurodivergent and disabled activist accounts regarding behavioural
intervention. A recent multicentre, cluster randomised controlled trial
conducted by Hassiotis et al. (2018) however found no ‘treatment effects’ in
terms of reductions in ‘challenging behaviour’ between those being cared for by
staff trained in PBS compared to those who were not, and that further research should:
“…endeavour to identify other interventions that can reduce challenging
behaviour.” (Hassiotis et al., 2018:1).

According to the UK Society of Behaviour Analysts, the use of ABA should
be based on a number of values, including a focus on the ‘individual’ and on
‘skill acquisition’. “Behaviour analysts ensure that the goals, methods, and
outcomes of any intervention are important, understandable, and acceptable to
the person whose behaviour is being changed, as well as to those who care about
the person (e.g., parents, carers, teachers).” (UK-SBA, 2018).

Given that ABA is practised upon young children and less verbally
articulate autistic people, coupled with the lack of understanding often found
in non-autistic people’s interpretations of autistic ways of being and actions
(Milton, 2012, Chown, 2014, Heasman and Gillespie, 2017, Sasson and Morrison,
2017), these values cannot be ensured. The ethical decisions as to what
behaviour is to be addressed and why is left to carers and professional
advisors. It is also notable that the behaviour often deemed in need of change
by professionals for ‘social validation’ are not as important, understandable
and acceptable to the autistic person expected to perform and comply.
Similar issues would also be pertinent with all neurodivergent identities.
“Any decisions made about how behaviour will be assessed or changed are
sensitive to the individual circumstances of the person and are aimed at
improving quality of life.”
(UK-SBA, 2018).

Yet, when quality of life is defined in normative terms and without the
input of neurodivergent people, or even deliberately not addressing critique,
it can only too quickly become ableist oppression. Behaviour analysts suggest
that ‘skill acquisition’ should be seen as primary goal of intervention. This
places the pressure on the neurodivergent person to conform to society, whilst
not making the same effort in return (Milton, 2014, 2017) “…to address quality
of life issues by improving skills that can remove barriers to learning and facilitate
independence and best practice utilises methods based on ABA…” (Keenan et al.
2014: 167).

The narrative presented by some leading advocates of ABA see autism and
other neurodevelopmental ‘conditions’ as barriers to learning, and ABA as a way
of facilitating independence and improving skills, and that this will all lead
to a better quality of life. This statement is however highly normative, and
unsympathetic to a social model of disability. Criticisms of ABA are often
misrepresented by ABA proponents as a caricature, without attempting to engage
fully with those criticisms. This is particularly relevant when such practices
are implemented on potentially vulnerable people.
“One expects lobby groups to give vent to fixed and emotionally charged views,
but one expects more from scientists. Tolerance of scrutiny, acceptance of
criticism, and objectivity in experimental approach and the interpretation of
outcomes are expected. A discipline that makes extravagant claims of its
methods, overstates its scientific status and has difficulty agreeing on
definition of its terms will struggle to achieve scientific credibility.”
(Hughes, 2008).

For many neurodivergent activists, the normalisation agenda inherent in
such approaches is not a caricature, but a felt experience of living in what is
perceived to be an inherently ableist society. Who gets to define what is
‘appropriate’, ‘challenging’, ‘disordered’, and ‘socially important’, is always
imbued with unequal power relations (Mason, 2005). A denial of the directly
felt harm of those that have had such methods implemented on them is often met
with increased anger and frustration from members of the neurodivergent
communities, as well as some parents (for examples see: realsocialskills, 2018,
Omum2, 2018, Dalmayne, 2018), yet despite this, activists have attempted to
explain what their contentions are, even making distinctions between differing
experiences of ABA (Unstrangemind, 2018). The impasse between these
perspectives is not just over the ideological purpose that a method is set to,
but also the processes of ABA-based practices.

Although Milton (2016) found that interventions akin to PBS were popular
amongst parents, this was contrasted with the views of autistic people.
Tensions between these views are likely to persist, but a greater understanding
of the reasoning behind why differing stakeholders are attracted to differing
ideologies and practices can help all to build a common language in which to
debate the issues. Such a way forward is being held back by those with a
dogmatic adherence to ABA however, and a focus purely on the reduction of
so-called ‘challenging behaviours’.

“…the whole ABA movement appears increasingly more like a cult than a
science: there is a charismatic leader, a doctrine, a failure to engage with
criticisms, inquisition and denunciation of any who criticise (however mildly),
misrepresentation of critics, and proselytising exercises to gain more converts
and spread the word.” (Jordan, 2001, cited Fitzpatrick, 2009: 141).

A study by Remington et al. (2007, cited Fitzpatrick, 2009) compared
those who had home-based ABA to those who did not, over a two-year period.
Using measures of intelligence, language use, daily living skills, and a
statistical measure of ‘best outcomes’, the majority made no significant
advances. Magiati, Charman and Howlin (2007) found no significant differences
in a range of outcome measures either, although large differences were found
regarding outcomes within both control and experimental groups. Hogsbro (2011,
cited in Milton, 2016) found that on average, ABA provision had a negative
impact on a number of standardised measures. Yet, the parents of children on
such programmes were found to hold the highest expectations for their
children’s educational progression, and professionals and parents using this
model subjectively rated improvements higher than all other groups. Similar
findings were also found by Kupferstein (2018).

“I had virtually no socially-shared nor consciously, intentionally
expressed, personhood beyond this performance of a non-autistic ‘normality’
with which I had neither comprehension, connection, nor identification. This
disconnected constructed facade was accepted by the world around me when my
true and connected self was not. Each spoonful of its acceptance was a shovel
full of dirt on the coffin in which my real self was being buried alive…”
(Williams, 1996: 243).

In this quote, the late Donna Williams (1996) suggests that by learning
by rote how to act as a nonautistic person can produce a ‘masking’ effect and
be detrimental to long-term well-being and mental health. Williams (1996)
directly criticised the use of behavioural techniques such as ABA for only
working on function and appearance, and for their lack of fit with autistic
perceptions. For Williams, such techniques:
“…may feel like a senseless ritual of abuse, regardless of its ‘good’
intentions.” (Williams, 1996: 51).

Kupferstein’s (2018) recent study regarding the potential links between
ABA, post-traumatic stress disorder (PTSD) and autistic people found that
respondents across all ages who were exposed to ABA were 86% more likely to
meet the PTSD criteria than respondents who had not been exposed to ABA
practices.

Major issues with the ABA theory and practice:

– What behaviours are reinforced and deemed as functional and of social
importance and relevance is chosen by an outsider
– ‘Reinforcements’ may be inappropriately given (e.g. the bombardment of
emotionally laden praise, and hugging, and punishments being potentially
internalised as rewards such as timeouts)
– Rote learning can lead to training people to behave as if their problems do
not exist, or lead to ‘autopilot’ responses
– The claim that ABA will suit everybody as an applied method – it clearly does
not
– The focus on behaviour at the detriment of subjective understanding and
cognition
– Often focuses on compliance and founded on normative assumptions
– Reduces opportunity for natural curiosity and exploration
– Utilises ‘reinforcements’ that are often extrinsic rather than intrinsic
motivations for activities
– The lack of generalising of newly learnt ‘skills’
– Sometimes punishment is endorsed as a ‘last resort’
– The intensity of programs (often suggested that one works on ABA programs for
forty hours a week).

Instead, it is recommended here that practices should:

– Take a holistic and person-centred approach which therefore takes into
account neurodivergent sensibilities, sensory perceptual differences,
subjective accounts, cognitive theory, and a social model of disability
– Building understanding and communication between all involved
– Enabling environments to be more accessible
– Reducing direct confrontation
– Ethical considerations must be built in to every step of the process of
acquiring professional competencies
– Use of dangerous restraint methods and forced seclusion should be seen as
disciplinary offences
– Rather than focusing on perceived weaknesses and absent skills, utilise
strengths and interests
– Neurodivergent perspectives must be built in to every step of the process of
acquiring professional competencies
– Building local expertise and communities of practice, drawing upon
multi-disciplinary expertise, but places the neurodivergent person at the
centre of considerations.

Although similar criticisms can be made of other normative interventions
that are administered upon neurodivergent people, few have as poor a track
record in terms of participation as ABA and PBS. Although individual practice
by parents and indeed professionals may not seek normalisation in the use of
ABA, the flaws in its theory and implementation mean that we should be looking
beyond its scope. Therefore the endorsement of PBS by the Care Quality
Commission, alongside the widespread use in schools and mental health services
needs urgent review. As a way forward, it is suggested here that the
person-centred and socially sensitive approaches being developed by groups such
as Studio3 and AT-Autism are promising and that these need to be tested with
high quality research.

References
Child Autism UK (2018). ABA and autism. Accessed online at: https://www.childautism.org.uk/aboutautism/applied-behaviour-analysis-aba-and-autism/
Chown, N. (2014). More on the ontological status of autism and the double empathy problem. Disability and Society. Vol. 29(10): 1672-1676.
Dalmayne, E. (2018). Applied Behavioural Analysis: First-Hand Accounts, Accessed online at: http://www.autismdailynewscast.com/applied-behavioural-analysis-first-handaccounts/27715/emmadalmayne/3/
Fitzpatrick, M. (2009). Defeating Autism: A Damaging Delusion. London: Routledge.
Hassiotis, A., Poppe, M., Strydom, A., Vickerstaff, V., Hall, I. S., Crabtree, J., and Cooper, V. (2018). Clinical outcomes of staff training in positive behaviour support to reduce challenging behaviour in adults with intellectual disability: cluster randomised controlled trial. The British Journal of Psychiatry, 1-8.
Hastings, R. (2013). Behavioural method is not an attempt to ‘cure’ autism, Accessed online at: https://theconversation.com/behavioural-method-is-not-an-attempt-to-cure-autism-19782
Heasman, B., & Gillespie, A. (2017). Perspective-taking is two-sided: Misunderstandings between people with Asperger’s syndrome and their family members. Autism, published online July 2017: http://journals.sagepub.com/doi/abs/10.1177/1362361317708287#articleCitationDownloadContainer
Hughes, M-L. (2008). ABA – Giving Science a Bad Name? Accessed online at: https://thepsychologist.bps.org.uk/volume-21/edition-5/letters
Keenan, M., Dillenberger, K., Rottgers, H., Dounavi, K., Jonsdottir, L., Moderato, P., Schenk, J., VireusOrtega, J., Roll-Pettersson, L. and Martin, N. (2014). Autism and ABA: The Gulf Between North America and Europe, Review Journal of Autism and Developmental Disorders. Vol. 2(2): 167-183.
Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis, Advances in Autism, Vol. 4(1): 19-29.
Magiati, I., Charman, T. and Howlin, P. (2007). ‘A two-year prospective follow-up study of community-based early intensive behavioural intervention and specialist nursery provision for children with autism spectrum disorders’, Journal of Child Psychology and Psychiatry. Vol. 48 (8): 803-812.
Mason, M. (2005). Incurably Human. Nottingham: Inclusive Solutions.
Milton, D. (2012). On the Ontological Status of Autism: the ‘Double Empathy Problem’. Disability and Society. Vol. 27(6): 883-887.
Milton, D. (2014). So what exactly are autism interventions intervening with? Good Autism Practice, Vol. 15(2): 6-14.
Milton, D. (2016). Educational discourse and the autistic student: a study using Q-sort methodology [doctoral thesis]. Birmingham: University of Birmingham.
Milton, D. (2017). Challenging the ideology of idealised normalcy. in: Milton, D. and Martin, N. eds. Autism and Intellectual Disabilities in Adults, Vol. 2. Hove, UK: Pavilion Press.
Omum2 (2018). ABA and Autism – the thorny problem of control and consent, Accessed online at: http://smallbutkindamighty.com/2015/06/16/aba-and-autism-the-thorny-problem-of-control-andconsent/?utm_content=buffer71bf8&utm_medium=social&utm_source=twitter.com&utm_campaign
Realsocialskills (2018). ABA therapy is not like typical parenting, Accessed online at: http://realsocialskills.org/post/120453082402/aba-therapy-is-not-like-typical-parenting
Research Autism (2018). Applied Behavioural Analysis, Accessed online at: http://www.researchautism.net/autism-interventions/types/behavioural-anddevelopmental/behavioural/applied-behaviour-analysis-and-autism
Sasson, N. J., and Morrison, K. E. (2017). First impressions of adults with autism improve with diagnostic disclosure and increased autism knowledge of peers. Autism, published online November 17th, 2017: http://journals.sagepub.com/doi/abs/10.1177/1362361317729526
Stanford Encyclopedia of Philosophy (2015). Behaviorism. Accessed online at: https://plato.stanford.edu/entries/behaviorism/
Unstrange Mind (2018). ABA, Accessed online at: https://unstrangemind.wordpress.com/2014/10/07/aba/
UK Society of Behaviour Analysts (2018). Behaviour Analysis. Accessed online at: http://uksba.org/behaviour-analysis/
Wilhite, C. (2015). Trangender people and behavior analysis’ dark past. Accessed online at: http://www.bsci21.org/transgender-people-and-behavior-analysis-dark-past/
Williams, D. (1996). Autism: An Inside-Out Approach. London: Jessica Kingsley.

Original publication can be found on https://neurodiversitymanifesto.com/

Interview with Steve Silberman


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:


Photo of Steve Silberman and Keith Cockburn at their wedding.
Photo by Mike Mermin

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.