National Play Day 2020

Due to the COVID-19 pandemic, rather than organising collective events across the UK National Play Day 2020 is focusing on children’s rights to play at home. We’re increasingly being told about the importance of play, and there’s copious research into why this is, however when you’re Autistic and/or the parent of an Autistic child, most sentences which include the word “play” in relation to your child are telling you about how they’re “not playing correctly,” or they’re “only doing parallel play rather than cooperative play,” all heading to the climactic “we need to teach your child how to play.”

Wait, what?

Numerous dictionary definitions state that when people play they’re spending time doing enjoyable things; doing things for pleasure; doing things for fun. So how on earth can anyone be doing it wrong?

National Play Day state that:

Playing is fun and is central to children’s happiness

Playing helps children’s physical, mental and emotional health and well-being

Playing boosts children’s resilience, enabling them to cope with stress, anxiety and challenges

Playing supports children to develop confidence, creativity and problem-solving skills

Playing contributes to children’s learning and development.

Nowhere does it state that playing is prescriptive and must follow a set pattern. Neither does it state that “proper play” means pretending to drive a toy car down an imaginary road rather than lining it up, while also meaning that a banana is also a phone and not always just food.

I’d planned to write an article about the differences between non-Autistic and Autistic play, citing research as well as my own experiences as an Autistic parent of Neurodivergent children, however when I started to do search for things to back up (or disprove – I’m not shy about being told I was wrong) what my (and others I know) experiences are, all I could find were research documents pertaining to non-Autistic children, and hundreds of articles about how to “make” your Autistic child play like everyone else. At this point the plan went out of the window – I could say I threw my toys out of the pram, but that wouldn’t be very appropriate of me, would it?

Instead I want to use this as a springboard to start a discussion:

  • How did you play as an Autistic child?
  • How do you play as an Autistic adult?
  • What are your Autistic child’s favourite games?

Before going further, I just need to say it loudly for the people at the back:

Forcing Autistic children to “play appropriately” is a contradiction of play. You are making them work.

Play is important for so many reasons. It helps children practice skills they’ll need later in life, and current pedagogy uses play with younger children as the main basis of teaching: Learning Through Play seems to be the tagline of most Foundation Phase (KS1) departments. Play is so important that it’s article 31 in the UN Convention of the Rights of the Child which is enshrined in law in Wales.

Among the research, common themes of play being important for recreation and relaxation dominate the results, so why when we have Autistic children – who are often autonomy seekers in a world where they have to work hard to conform – do we turn their play into another therapy/learning opportunity/social skills lesson? Why can’t they play the way they want? Why must we steal what little autonomy and self-regulation they have?

Play is also described as a cathartic activity in which people (particularly children) express their feelings, get rid of negative emotions, and replace them with positive ones. Do you think that by telling a child that they can’t solo-spin on the playground because they should be playing tag with the rest of the class is cathartic for them? Are they going to be able to express their feelings? Or are they having to ignore their needs for the sake of your tick box exercise?

Instead of changing the Autistic’s method of playing, join them! Spin, jump, flap, line up toys, play a couple of hours of Minecraft, whatever it is that they want to do. The main focus should be on having fun.

 

References

National Play Day (2020), Home Page, [online]. Available at https://www.playday.org.uk/ (Accessed 03/08/2020)

Oxford Learner’s Dictionaries (2020), Play [Verb], [online]. Available at https://www.oxfordlearnersdictionaries.com/definition/english/play_1 (Accessed 03/08/2020)

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.

Online Focus Group: Impact of the COVID Crisis – The Positives and Negatives (Autistics and Allies)

Our first Autistic and Ally focus group is about the Impact of the COVID Crisis – The Positives and Negatives:
 
We want to know:
  • What was your best experience during the crisis?
  • What was your worst experience during the crisis?
  • What do you want to see happen post COVID?
  • What don’t you want to see post COVID?

If you’re interested in this and future focus groups, please follow the website link and complete the registration form.

Online Focus Group: Impact of the COVID Crisis – The Positives and Negatives (Autistics Only)

Our first Autistic only focus group is about the Impact of the COVID Crisis – The Positives and Negatives:
 
We want to know:
  • What was your best experience during the crisis?
  • What was your worst experience during the crisis?
  • What do you want to see happen post COVID?
  • What don’t you want to see post COVID?

If you’re interested in this and future focus groups, please follow the website link and complete the registration form.

Are Autistics empowered during pregnancy and labour in line with the ICPD?

Today (11th July 2020) is World Population Day which “this year calls for global attention to the unfinished business of the 1994 International Conference on Population and Development” (ICPD).[1]

The ICPD met in Cairo in 1994 and 179 governments adopted a Programme of Action relating to reproductive health and the empowerment of women. ICPD is “often used as a shorthand to refer to the global consensus that reproductive health and rights are human rights.”[2]

[Before I continue, I’d like to thank Hayley Morgan for her guidance and direction to some of the only academic articles out there regarding this matter.]

Despite this consensus, many Autistic women (and those non-binary and otherwise gendered people who have given birth), report that the support (or lack of) they received during pregnancy and birth from their medical teams was not reflective of their needs. A study of women with intellectual and developmental disabilities conducted in 2015 by Potvin, Brown and Cobigo found that a “high level of available support was not always perceived as beneficial” and that “social support is perceived as most effective when three conditions are met: (1) support is accessible, (2) support is provided by individuals expressing positive attitudes towards the pregnancy, and (3) autonomy is valued.”[3] The study concludes that there’s a lack of accessible information for developmentally disabled women, and that maternity care providers should “be aware of stigmatizing attitudes and respect the autonomy of pregnant women with IDD as they prepare for motherhood.”

For pregnant Autistics, not only is there a lack of accessible information for those who need it, there’s a lack of information full stop. If you Google ‘pregnant and Autistic’ or ‘Autistic pregnancy’ the results include a plethora of articles speculating about whether or not you can ‘prevent autism’, articles listing the ‘risk factors for having an Autistic child’, a small handful of academic research papers which are often behind paywalls, and (from the first 10 pages of the Google search results) a couple of articles containing the experiences of actually Autistic people who have experienced pregnancy and birth.

Pregnant people often spend at least some time researching what to expect during pregnancy and birth – there’s an abundance of books, articles, websites and forums highlighting this fact – yet pregnant Autistics and Autistic parents have been accused of Fabricated or Induced Illness due to the volume of research they have conducted and their use of medical – rather than colloquial – terminology in appointments. This is discussed in a 2017 article by The Guardian in which Autistic women report their experiences of motherhood including fears of putting “professionals’ backs up and [being] accused of causing or fabricating their children’s condition” and being “terrified their children will be removed from them if social workers misinterpret their autistic traits as indicating potential harm to the child.”[4]

It’s also reported that the experiences of pregnancy and birth for Autistics are quite different from their non-Autistic counterparts, and that sensory differences (for example) were dismissed as ‘not possible’ by their midwifery team. An article on Tommy’s (the miscarriage and baby loss charity) website features Rachel, an Autistic mum who has experienced multiple miscarriages. Rachel talks about how she (along with “many Autistic mothers”) are “very aware of their internal body state and knew things about their pregnancy before the textbooks said they should” which meant that she was more acutely aware of pregnancies she had lost in the early stages of conception. Rachel also discusses the difficulties Autistics have with processing pregnancy loss, and that “some may not process what has happened immediately or even within the weeks and months that follow the loss.” This processing delay coupled with reduced social networks reported by Autistics (corroborated by Potvin, Brown and Cobigo’s aforementioned study) contribute to the “isolation and detriment [pregnancy and baby loss] causes to mental health.”[5]

A study published in Women and Birth in 2017 explores the sensory differences reported by pregnant Autistics alongside other reported challenges they face. The review of current literature and its supplementary anecdotal evidence from blogs found that Autistic women “reported that they needed to feel more empowered about the circumstances of their giving birth and that they relied on three factors during their experience—clear communication, sensory adjustments and change management.” It highlights issues faced by Autistic people more generally – hospitals being noisy environments and touch which “may bewelcomed by many patients can be the cause of pain or distress for the [Autistic person].”[6]

Therefore, Autistic UK recommend that the needs of Autistic women, non-binary, and otherwise gendered people who give birth are reviewed and recognised in accordance with ICPD. Midwifery teams need to receive clear guidance and training from Autistics with lived experience in order to ensure the needs of all pregnant Autistics are recognised and met. There are a number of Autistic professionals with experience in this area, including Hayley Morgan MSc, who are able to provide talks and training regarding the Autistic experience of pregnancy and birth in order to achieve positive outcomes for both the Autistic person and their baby.

References

[1] United Nations (2020), ‘World Population Day July 11’ (Online) accessed 9th July 2020. Available at https://www.un.org/en/events/populationday/

[2] United Nations Population Fund (2019), ‘Explainer: What is the ICPD and why does it matter?’ (Online) accessed 9th July 2020. Available at https://www.un.org/en/events/populationday/

[3] Potvin, LA, Brown, HK & Cobigo, V (2016), ‘Social Support Received by Women With Intellectual and Developmental Disabilities During Pregnancy and Childbirth: An Exploratory Qualitative Study’ Midwifery, Vol. 37, pp 57-64 (Online) accessed 9th July 2020. Available at https://pubmed.ncbi.nlm.nih.gov/27217238/

[4] Hill, A (2017) ‘Mothers with autism: ‘I mothered my children in a very different way’’ The Guardian (Online) accessed 9th July 2020. Available at https://www.theguardian.com/lifeandstyle/2017/apr/15/women-autistic-mothers-undiagnosed-children

[5] Rachel (ND) ‘Recurrent miscarriage and being autistic’ Tommy’s (Online) accessed 9th July 2020. Available at https://www.tommys.org/our-organisation/help-and-support/baby-loss-stories/recurrent-miscarriage-and-being-autistic

[6] Rogers, C, Lepherd, L, Ganguly, R, & Jacob-Rogers, S (2017), ‘Perinatal issues for women with high functioning autism spectrum disorder’ Women and Birth Vol. 30 Iss. 2, pp e89-e95 (Online) accessed 9th July 2020. Available at https://www.sciencedirect.com/science/article/pii/S1871519216301287

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:

Whorlton Hall Panorama Report – A Statement

From the Directors of Autistic UK

Written by Errol Kerr and Kat Humble

Within the past few months, the revelations as to how the most
vulnerable of our community are treated at the hands of healthcare
professionals have been horrifying, though unsurprising, to us at Autistic UK.

Whether it’s Winterbourne View, Whorlton Hall or who knows how many
others, there is the level of contempt amongst those who provide care for
autistic and learning disabled people. Our long-term physical and mental health
needs go unmet, thus shortening our lifespans and damaging the lives that we
and our families live. There is a very good reason why the suicide rate amongst
autistic people is nine times higher than the national average. This number,
combined with those who die from neglect or incompetence is a canker in the
heart of our society that is being ignored.

Denial of Rights

Some deny us our right to adequate support for being “too expensive” to meet our needs locally. Some attempt to deny us support because it’s too much effort and keep passing it on to another agency. Then there are those, like the gang of staff members at Whorlton Hall, denying us support in favour of constant abuse and victimisation because they do not see us as fully human. We are “other” to them and therefore fair game.

This is not new. It is not a surprise, at least not to us. It is an
obvious outcome of a society that does not value difference. A society that not
only doesn’t value difference but fears it. A society where people feel they
must distance themselves from others who don’t conform to their definition of
normal. It is also the obvious outcome of a system that is not only corrupt,
but essentially unmonitored despite the existence of the CQC. An organisation
that is rapidly proving itself unfit for purpose.

The inhuman abuses that our people have regularly suffered at the hands
of those meant to care for them will shock the general public for a little
while and then, when we are no longer front page news and people have forgotten
about us, another revelation will happen. But, as incredible as this
investigative programme was, it alone will not change what is happening.

Panorama

In 2011, Panorama shocked the nation with the revelation of the abuses
at Winterbourne View. The CQC investigated the rest of the homes operated by
that company, Castlebeck Care, and found a “systemic failure to protect people or to
investigate allegations of abuse” and accused Castlebeck of misleading
them. Shortly after, the CQC came under scrutiny itself when it was discovered
that they had received numerous allegations of abuse dating back to 2008. The
head of the CQC resigned following the investigation. Sadly, that appears to
have been the sole outcome.

Now, eight years later, Panorama has
found another vile example to shock the public, Whorlton Hall. And again, they
have done a stellar job of showing the extent of the horrors that have
happened. Yet there have been numerous discoveries of such abuses between these
two investigations. One example was Mendip House, run by the NAS, who were
accused by the resident’s relatives of hiding the abuses suffered by their
loved ones for years before acting.

The Cover Up

Evidence in the report by the Somerset
Safeguarding Adults Board showed that the NAS had conducted internal
investigations which revealed extensive degradation of the people under their
care but did not alert the CQC or the police of these crimes. The report observed that it was “remarkable”
that, five years after Winterbourne, these abuses were not brought to light for
so long. The NAS was fined £4000 by the CQC for the financial abuses committed
by the staff, but not the perpetrators of the physical and mental abuses that
occurred. Despite these findings, the CQC stated that no other action was
required of them. No criminal charges were brought and the residents of that residential
care home were left without justice, like so many others. And so it continues.

Fit For Purpose?

A watchdog with no protective instinct is
useless. In a 2017 report by John Burton of the Centre for Welfare Reform, it
is shown quite clearly why the CQC is so ineffective. Instead of listening to
residents and loved ones directly, these worried people are directed to a call
centre where staff have no knowledge of who that home’s local inspector is or
how to reach them. All this call centre can do is essentially take a message
and put it on the home’s file. Reports of abuse and concerns of neglect are
left to pile up between inspections. Even then, those reports are often not
regarded, as the CQC rely most heavily on documents like care plans rather than
digging beneath the polished surface presented by a care home that knew they
were going to be inspected.

These abuses will not stop until the CQC
is reformed from the ground up. Autistic and Learning Disabled people are
speaking, CQC, are you listening?

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

An Appeal to Stop the Inhumane Deportation of Gopul Anand

by Errol Kerr and Kat Humble

Gopul Anand, 23, is fascinated by computers. He loves to explore science, music and art and has an immense interest in learning as much as he possibly can about the world. His brother, currently studying computer science at university, shares information on what he is studying with him as well as playing the odd video game or two.

Gopul is an autistic and multiply disabled young man currently living in Oxford with his father and mother and his younger brother visits him during term-breaks and weekends. He receives round-the-clock care from his family after his health deteriorated drastically in 2013. He was sent to an ATU (Assessment and Treatment Unit) in 2015. After 10 months, his family were forced to go through a mental health tribunal to have him released and Gopul still struggles with nightmares and flashbacks about his experience there.

Due to his many conditions (autism, learning disability, epilepsy and schizophrenia), Gopul needs a significant amount of care. His medication often leaves him sedated to such an extent that he is unable to carry out a regular daily routine without support. He is assisted by two support workers when he needs to use public transport or go shopping. Feelings of anxiety manifest in outbursts and meltdowns, but Gopul often finds ways to stim in order to stem these.

Visa Troubles and Stress

Gopul’s family moved to the UK as his father, Shekhar, started working at Oxfam on a five-year intra-company transfer visa. This had previously been extended and was to extend further, as Oxfam were hoping to keep Shekhar working with them due to his immense experience and talents. However, as the rules around visa extensions changed as part of the policy on immigration, Shekar and his family were planning to return to India. Unfortunately, after Gopul’s health deteriorated in 2013, it is now impossible for him to travel safely.

Medical professionals, including his doctor and social worker, have stated that Gopul is unfit to travel, and that both his safety and the safety of the other passengers would be at risk should he have to leave his current environment. Should Gopul be forced to leave the UK, his family and medical professionals report that not only would his condition will suffer irreparable damage and extreme anxiety, but it could also make him dangerous to other passengers during travel, also affecting his mental health and well-being in the long run.

His current care plan has been thrown into uncertainty because of the protracted situation with the Home Office. Gopul and his social workers have spent many months building trust and a strong relationship with one another and, after his experiences in the ATU, family support is key. Gopul’s friends, family, medical team and possessions are all here, in the UK. Here, he is in a safe environment with appropriate support and medical treatment. This support would be unavailable should Gopul and his family be forced to leave.

Human Rights Violation

Because his health conditions are not obviously physical – i.e. either because they are invisible disabilities or mental health conditions, the Home Office has elected to ignore all medical evidence provided. The family’s solicitor, Sugina Mehra, affirmed that the level of medical evidence supplied by Gopul’s psychiatrist and social worker was ample. This, of course, is a grave breach of Gopul’s human right to not be discriminated against because of his disabilities. Disabilities should not have to be visible to be counted as real.

This situation has deeply affected his mental health. He has stopped attending regular social groups due to the intense stress he feels about his family’s situation and he is now less able to control his impulsive behaviour as his stress increases. Gopul considers the UK his home. It has been his home for the past seven years.

Please Help

We are hoping that, by publicising his case, it will encourage the general public to contact the Home Office and their MPs to register their disgust at the decision and to state their support for Gopul and his family. We are also hoping that you will sign the petition at https://www.change.org/p/home-office-please-don-t-force-my-severely-disabled-son-to-leave-uk?recruiter=410764766&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition to join the thousands who have already signed it to show their support. Thank you.

International Day of Disabled Persons 2018

by Errol Kerr 

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 (info@autisticuk.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.