All About Autism

April is Autism Awareness Month, or as it is now becoming known, Autism Acceptance Month.

Many charities, organisations and activism groups working for and with the Austistic Spectrum Disorder (ASD) community agree that most people are already aware of the existence of autism. It is more important now to increase understanding and acceptance, so that we can work towards making society a safer, more welcoming place for everyone in the ASD community.

People often think they know what autism is, or what an autistic person is like, but there are many myths that have been created by films and television, or the kind of lazy journalism that unfortunately is still prevalent when talking about mental health and neurodiversity.

It is also widely recognised that there are many people who may not realise that they are autistic, and could benefit greatly from the knowledge that this is what has been making some areas of their life difficult to negotiate.

We are, however, not “all a little bit autistic”, in much the same way that taking half an hour to arrange your pens in colour order doesn’t make you a ‘little bit OCD’. People can be affected by autism in more severe and disabling ways, but you’re either on team ASD, or you’re an ordinary mortal.

That’s a little autistic humour.* for you there. And you thought we didn’t get jokes! Just like with everyone, it depends on the joke.

The traits that define someone as being on the autistic spectrum are all perfectly usual (-ish) behaviours, just as is the case with many mental health conditions. It’s when those behaviours are no longer part of a well-managed, comfortable life, for us or for those around us, that their classification can change from behaviour to symptom, and become pathological. There’s nothing incomprehensible or scary about the way autism can affect us, any more than any other aspect of life, once you understand what’s happening and why.

A good place to start that process is by dispelling some of the more persistent myths there are around autism.

Myth #1.

Autistic people have no social skills but are great at science and maths. You know, like Rain Man. Or yes, the characters in Big Bang Theory and Young Sheldon.

(Let’s be quite clear and say that it’s not ok to promote harmful stereotypes for humour, just because some of those traits might be seen as desirable, like being smart.)

Anyway, whilst Rain Man is often dismissed as harmful or blinkered stereotyping of ASD today, it is easy to forget that once, there wasn’t the level of representation available that we have today, and so it made huge strides in both awareness, acceptance and in raising funds too. It is also a much more real, sympathetic and accurate depiction than, say the one shown in last years film from the musician Sia, ‘Music’, for which there is really no excuse.

But Rain Man depicts someone who has been entirely institutionalised by a system with no understanding for his condition, and who has savantism, a variant which affects about 10% of people with autism. In fact, he has what would probably be classified as ‘prodigious savantism’. Unlike the common misconception this gives weight to, skills of this magnitude do not have to come at the deficit of other areas, in much the way people mistakenly think a greater sensitivity to sound in someone blind is to ‘make up for their handicap’. Daniel Tammet is articulate and engaging, but learnt Icelandic in one week as a challenge, and the way he thinks mathematically is truly extraordinary. But some autistic people born with very severe developmental issues also can demonstrate high degrees of savantism, if given the chance to access their skill, and explore their unique way of processing information.

However, the important thing to take from this is that more than 90% of autistic people are of just average numerical skill. So it’s no use taking them along to Vegas in the hope of a life-changing win. Most autistic people will hate Vegas. (See myth #2)

Myth #2

Autistic people will have meltdowns for no reason, or just if they don’t get their own way. Then they do weird and scary stuff and everyone will stare or get upset. They need to learn not to do that

People with autism never do anything for no reason. Sometimes, they may struggle to articulate that reason, but it’s always there. ‘Meltdowns’, where someone with ASD is not able to regulate their emotional responses, are almost always caused by sensory overload — positive or negative. Don’t be taking your autistic friends for a weekend in Tokyo or Vegas unless you know that’s their thing. Loud background noise, two or more people talking at once, irregular noise, bright lights or lots of visual ‘noise’; colour and movement, crowds, being touched too much or repeatedly, feeling trapped or too exposed, strong smells, emotional stress, changes of plan without warning, unpredictable behaviour, a random memory… A key part of our brain gets overloaded and just pulls the plug on everything. What triggers this will vary from person to person, but the end result is just as overwhelming, and much more frightening for us than it is for you.

What is great is that society is starting to show how increased awareness of autism can be put to use to make the world more accessible to autistic people. Film showings and shopping times specifically for autistic people are becoming more common, and more accepted as a reasonable thing to expect.

If you have a friend or family member with autism and this is something that can be an issue for them in some situations, ask what would help them most. It’s no good hugging someone whose touch sensitivities are off the scale. Or trying to talk to someone with sound overload, and expecting an answer: the world is already screaming at them in their head. If you’re ever not sure what to do, and find yourself in this situation: 1) Stay as calm as possible, and be as reassuring as you can; 2) Make sure the person is safe and not likely to hurt themself or anyone else; 3) Don’t let anyone who doesn’t understand make the situation more stressful or panic unnecessarily; 4) Try to guide them to somewhere safe, calm and quiet — visually ‘quiet’ too — and give them some space; 5) See if focus on their breathing will help: or try just breathing with them. 6) Maybe a glass of water if they’re safe to be left whilst you fetch a drink or snack — but don’t leave them unless both you and they feel safe and confident that it’s ok to do so.

It’s like a huge panic attack, so be guided by what they say. Use gentleness, even if you feel stressed or frustrated. And let them stim as much as they like.

Myth #3

Stimming. What are they doing? They need to stop doing it. I don’t understand and it scares me.

You do understand. You do it yourself. You twist your hair, tap your fingers, stroke your ear or twist your bangles when you’re nervous. It’s a repeated familiar action that makes you feel calmer. And it’s ok to do it, if it’s not upsetting anyone else! There’s an area here where you need to be your own advocate, whilst being considerate of other’s needs. Your foot tapping, knuckle-cracking or pen clicking might be a simple manifestation of your nervous tension, and helping you to deal with that, but you may be driving someone else to the brink of murderous rage. Can you channel your itchy energy into something quieter, or take a break and clear out of the space for a bit? Sometimes, the answer is ‘no’. You may have to say, or tolerate hearing, “I’m really sorry, but this is the only thing stopping me from bashing my head into the wall repeatedly and screaming. I have an ASD diagnosis, and this is me being chill…”

Stimming can degenerate swiftly into scarier-looking behaviour, and may be a precursor to meltdown (see above). Repetitive and rocking movements are common, and understandably have a soothing element, but they can often be combined with head banging or hitting. Hand flapping is a common sign of distress or excitement. I don’t know why that’s such a common or effective behaviour channel. Perhaps we are symbolically keeping the bad things away, or dispelling a rush of energy?

Often larger movements like this are accompanied by groaning or moaning sounds. Often, this is the only noise someone can make in this state, and many autistic people hit a non-verbal stage in the build up to this, making it hard for them to let anyone know what’s happening. Or they can get caught in echolalia, where words others say get repeated without conscious motivation. If the person you’re with stops talking or being able to answer, it’s a good sign that things are going downhill and you should change the environment they’re in. Many will shut their eyes too. Their system is overloaded, so they will do what they can to reduce incoming stimulus.

Don’t try and restrain, hug, lie on top of or otherwise physically intervene unless it is necessary for their immediate safety. You may well make things worse, and could even get hurt. This is not a wriggling 2 year old you know you can be more bloody-minded than. If the person is an adolescent or adult, they could hurt you and themselves — unintentionally though that may be. Make sure they are somewhere safe, and try to speak calmly and reassuringly. Music can sometimes help, but everyone is different.

Myth #4

Autistic people don’t feel or understand emotions. It’s so tragic for the parents of children with autism, because their child will never show them any love or affection.

It’s now much more commonly accepted that people with an ASD diagnosis keep their emotions locked down because otherwise they’d be completely overwhelmed. Seeing someone else in pain or even just sad can be so intense that they have no option other than to leave. Many autistic people struggle with watching melodramatic films or tv — their empathy for characters can be too powerful. They don’t have too little empathy; they have far too much. So much so that their own emotions are too strong for them to make sense of, as they don’t fit in the neat boxes of classification they will have seen and heard described. A picture of a downturned mouth has no relation to the aching void of sorrow that sadness can mean. When they retreat from emotional situations or displays, or seem to be completely unaffected, they can actually — either deliberately or instinctively — be coping in the only way they can.

Myth #5

People with Autism always have obsessions. There’s always something they are a total nerd about, and whilst it might not be trainspotting any more, it probably involves Star Trek.

Look, ok. But have you seen how good Discovery is? I mean, we all know Shatner** is a terrible person now, but we have George Takei and he makes everything balance out.

Science fiction has very much always been the odd, autistic sibling in the fiction family, much as fantasy is their adhd non-identical twin. It’s about reaching beyond the mundane, grey reality where so little makes sense and you feel always left on the outside, to a universe of infinite possibilities, where science and — yes, ok — feeling alien are more relevant than knowing when to speak in a conversation. Please don’t read this as saying autistic people only like scifi and adhd people only like fantasy, though! For some the opposite is true, and any well-rounded nerd can tell you why the Lioness of Cintra was a better leader than Cersei as readily as which planet is the Wookiee home world. Or which Babylon 5 episode Neil Gaiman wrote.

Yes, usually clichés are there because they’re true. If you enjoy something, why wouldn’t you want to collect all the figures? And novelisations, comics, t-shirts and card games. Tattoos aren’t for everyone, but I cannot imagine a bad person with a tattoo of Geordie LaForge.

Collecting and a passion for seeking out a level of detail that many neurotypical people can’t understand are deeply comforting; although it’s always important to be clear on the difference between collecting and hoarding. A treasured collection can be at once an escape, a safe space, and instant membership of a peer group for people who struggle to socialise. The immersive experience of attending conventions can seem odd, childish or puzzling, but there are conventions for almost anything these days; from toys and games to soap operas, from cookery to kink.

Oh yes. Myth #6

Autistic people don’t get how to have normal relationships, or express intimacy. They just hold hands and watch Dr Who, then sleep in separate beds.

Well. One, there’s nothing sexless about sleeping in separate beds. Plenty of people with very active sex lives do it. Two, how do you think there are so many autistic people if we aren’t breeding? This is the next level of evolution, and you’re being replaced.

I said the quiet bit out loud again, didn’t I?

Don’t go mistaking the way autism can manifest for shyness or repression. Like we started out in talking about emotion, just because it isn’t being shouted about doesn’t mean it isn’t there. And, as we’ve discussed, autism can bring both passion, a love of collecting and a need to thoroughly investigate every nuance of a subject. People who think nerds are lonely and sexless should try discussing kink with one — at entirely their own risk. Autistic people can be over-sharers. That’s all I’m saying. Who do you think invented slash fiction?

There are a lot of autistic people who don’t fit into straight cis society, too. We’re very Gay, or, in fact very LGBTQIA+. Most of the polyamorous people I’ve met have been distinctly spectrum-y, and there are a lot of trans autistic people. Maybe the level of self-reflection and attention to careful classification means autistic people are often simply more authentic?

Yes. I could be biased. But it may also be based in truth, too.

The terrible myth of the clumsy nerd with no social skills, who’s unfit and unattractive (unless made-over and taught how to pass for ‘normal’ in some awful romcom) is very far from the truth. Autistic people are drawn to disciplines that can be researched and have rules and structure. Martial arts are a good example of this, as is historical weaponry. Outdoor skills, too, and there are a lot of sport nerds. Or they can be techies like the rest of us, and live vicariously through the internet.

I remember the dark times, the days B.I. (Before Internet). We must never go back there, never.

Myth #7

Autism is a way for parents to label children they can’t manage (see: adhd), or a new trend that is over-diagnosed, and is just exaggerations of normal behavioural quirks.

Diagnoses since the 1970s have gone up by a startling rate. Cases were estimated at 1 in 10,000 in the 70s & 80s. They’re now closer to 1 in 50. How is this possible? And why were there no autistic people 100 years ago?

Well, it’s not due to vaccines. Or lack of parental affection and childhood trauma.

A great deal is due to increased awareness in the population, better detection and improved diagnostic processes, and greater understanding of the disorder itself.

It’s also due to there not being any such thing as an ASD diagnosis until the 1980s.

Time for some History!

Before the 80s, autism was something diagnosed when children had extreme developmental issues, learning delays and behavioural problems. There was no ‘spectrum’, just those either so affected that they ended up institutionalised, or everyone else who was just ‘a bit odd’.

Then, in the 1980s, Dr Lorna Wing reclassified what autism meant, and introduced the term ‘Autism Continuum’ for what later came to be referred to as the autistic spectrum. She had also introduced the separate classification of ‘Asperger’s Syndrome’ in the late 1970s for what was becoming known as ‘high-functioning autism’. However, due to links between Dr Hans Asperger’s work on disabled children and the Nazi regime in Germany in the 1930s and 40s, the term is rarely used now.

Autism was first classified under that name in 1910 by Eugen Bleuler, a Swiss psychiatrist. He was distinguishing types of schizophrenia, and defined a very distinct variant where the patient is withdrawn into themselves and their own world, without the usual drive to communicate and interact with others — hence ‘autism’, from the Greek ‘autos’ referring to self. Then in 1943, Leo Kanner of Johns Hopkins Hospital in Baltimore, USA, used the description ‘early infantile autism’ in a study on a group of children displaying the kind of symptoms we would clearly recognise today as autistic. ‘Kanner Autism’ is used to define ‘classic’ autism quite frequently, especially in the US.

Kanner’s definition was new, and didn’t become accepted as its own syndrome until the 1960s, some doctors still using labels like ‘infantile schizophrenia’, and disagreeing on symptoms for some time after.

There had been a great paradigm shift in the way society regarded childcare that began in the 50s. The runaway success of Dr Benjamin Spock’s game-changing book on baby and child care had allowed parents to begin learning the importance of their baby’s emotional as well as physical health. It marked the end of rigid feeding times and leaving babies to cry for fear they become ‘spoiled’.

This was an enormous boon for isolated young parents. In the US, young families often now lived in the shiny new suburbs, away from family who might otherwise have helped and guided them. In the UK, post-war slum clearances and their replacement with ‘social housing’ and high rises led to the break up of older communities. It may well ‘take a village’ to raise a child, but villages were rapidly disappearing. However, sometimes, you can find a whole town in the pages of a book.

‘Baby and Child Care’ stayed at the top of bestseller lists for decades (and still sells well today), filling the gap left by the growth of cities and the move away from previous support systems.

This new responsibility for meeting the emotional needs of the child made psychiatry look again at how the early stages of autism were manifesting in children, now the signposts were more clearly indicated. The child’s parents seemed perfectly normal, so there must be an external cause — and the unfortunately still male-dominated medical profession decided that it must then obviously be the fault of the mothers.

As you can imagine, this became an awful time to be a parent, in far too many ways. Being a parent meant of course, being a mother, as men were busy out at work all day, and expected to come home to warm slippers and a cold martini, not crying babies. He had been working all day, for goodness sake, not sat around at home! A book may be great for practical advice, but it can’t sit you down and make you a nice of tea, or remind you how well you’ve done at the end of each day.

As it happened, it was almost as though psychiatry was creating its own market, because it stepped into the breech with ‘mother’s little helper’: Valium. Hurrah for science! Or big pharma and bigger profits anyway…

Research started in earnest into possible genetic links to autism in the 1970s, but it wasn’t until 1980 that it finally replaced the mischaracterised ‘childhood schizophrenia’ as it’s own diagnosis in the DSM 3. (Diagnostic and Statistic Manual of Mental Disorders). In 2013, the group of conditions linked to autism were finally grouped together as ASD or Autism Spectrum Disorder in DSM 5. It is still unclear whether autism is caused by heritable factors, mutation or what role environment can play.

It does seem to run in families, and the only reason there isn’t more data on this is because it simply wasn’t diagnosed in our parents time, leaving us with mainly anecdotal or small study data to look at.

I would never have been diagnosed as a child, and I was born in 1965. What is more frustrating still is that my mother worked with children with special educational needs. She saw autism every day, and I wasn’t it. I was bright and I liked reading books. Lots of books. I was just a tiny bit odd, but I didn’t know that, of course. As a girl, the question of an autism diagnosis would never have been suggested. It wasn’t as if I had a learning disability, just a minor social one. I don’t know what difference it would have made, being diagnosed as a child. I do know that there are lots of girls who would have had much easier adolescences, given that chance.

A figure often left out of the tangled story of autism is Grunya Efimovna Sukhareva. A Russian psychiatrist specialising in young children, she published her first definitive study describing the symptoms of what we would now recognise as ASD in 1925. Her diagnostic criteria almost exactly mirror those used nearly a century later, in the DSM 5. Although initially she used the term ‘schizoid psychopathy’, she later amended this to ‘autistic (pathologically avoidant) psychopathy’.

(For anyone involved in the autistic community or research, it’s impossible to miss the similarity between this and ‘Pathological Demand Avoidance’, a relatively recently identified and still controversial part of the ASD spectrum.)

Sukhareva published her paper at least ten years before Asperger, and her paper had been translated into German in the first year of its publication. It seems quite a stretch that Asperger would not have been aware of her work, with both of them working in such specific ares of study. But not even Kanner credits her, although her work was no secret. We must unfortunately conclude that the reasons for this are clear and profoundly disappointing. In 1943, you can see that an American scientist would be well-advised to steer clear of mentioning any Russian research in a positive light. Whether Asperger knew about her or not, it does not feel a great deal of a stretch to guess why a German doctor might dismiss the research not just of a woman, but a Russian and Jewish woman as well.

We should make sure she is recognised for her vastly important place in child psychiatry, however, especially as she was working at a time when so much harm was still being done by (male) psychiatrists and untested new theories. She was a true pioneer in research into childhood mental health, and an early advocate for children’s rights. The Sukharev Scientific and Practical Center for the Mental Health of Children and Adolescents of the Moscow City Health Department is named in her honour.

Perhaps if she had been able to get the international recognition for her work that she deserved, autism diagnosis and care would look very different today.

The disparity in diagnosis between boys and girls meant that it was regarded as an almost exclusively male disorder for many years. Whilst autism is still diagnosed in four times as many boys as girls, the ratio in a large Danish study in 1995 was 8:1, and Dr Lorna Wing reported in her 1981 study a ratio of 15:1. Actual incidence is thought to be closer to 3 or even 2:1. Few psychiatrists doubt that autism is something with a higher frequency in the male population, but it’s the reasons for past disparities that reflect on how we look at gender, child mental health and behavioural disorders as a whole.

Girls have always been socially conditioned to behave in certain ways; to be gentle, nurturing, conciliatory and empathetic. This has meant that conditions that can manifest as disruptive, prone to emotional disregulation and frustration, or even violent and destructive behaviour, will not tend to manifest in the same way in girls as in boys. Whilst there are few clear answers when it comes to the nature/nurture debate, the growing alignment between diagnoses for boys and girls, where there was previously such a strong disparity, may have much to do with our rejection of clearly delineated gender stereotyping in young children, their socialisation, play and education.

In the case of autism specifically, this means that it ultimately manifests differently in boys and girls, which might not have been the huge issue it was if this difference was recognised earlier. As it is, for years all the diagnostic criteria relied almost exclusively on data from boys — and from white, middle-class boys too. Girls who had been strongly socialised to make eye contact, smile when smiled at, and not be loud or angry would be easily missed, especially as they would often be more articulate and social as well. The well-accepted fact that autism has strong links to anxiety means that autistic girls just try even harder to fit in than ever. This is called ‘masking’, and whilst it does show up in boys too, in girls it can leave them not only undiagnosed but unaware of why they find so many things so hard, for so much of their lives, as a lot of masking is conditioned and unconscious. All we know is the disproportionate amount of energy even minor interactions can take.

You would perhaps imagine that things have made a painfully slow, perhaps, but steady upwards progress for the diagnosis and care of children and adults with ASD. Things of course, are always on their way to changing for the better, aren’t they?

Ah, welcome to psychiatry.

The fact that so many more boys than girls are diagnosed with ASD has been put down to the theory of the ‘Extreme Male Brain’. With the rapid and fascinating recent growth of research into and information on gender; including biology, psychology, sociology and philosophy, this may sound almost laughable at first glance. But this idea still has its adherents, and it was first brought into the arena by Professor Simon Baron-Cohen***, possibly the leading name in autism research in the UK. The theory itself, in its basic form, is as simple as it sounds: the autistic brain wants order, control and rules. It fixates on numbers, facts, machines and computers. These are all ‘male brain’ traits, as they are more commonly seen amongst men and boys. The autistic brain is bad at: social cues, understanding other’s needs, adapting to change and intuition. These are ‘female brain’ traits, and we’d expect to see them in women and girls. Therefore — you guessed it! Autism is caused by testosterone. Forward my Nobel prize to my Paris address, please…

Yeah, but no. Whilst the traits that are common indicators of autism are more commonly associated with logical, ‘masculine’ thinking styles, the phrase ‘gross oversimplification’ barely touches the edges, here. There may be differences in brain development that distinguish a male foetus from a female one. But you don’t make an autistic baby with a quick dash of extra testosterone, like Peter Parker being bitten by a radioactive spider. There’s no clear consensus where this sneaky extra testosterone is getting in, either — if it’s there at all. It muddies the (amniotic) waters of heritability, too, which looks by far to be the most likely pathway. Do autistic babies need autistic mothers to pass on their ‘extra testosterone dose’, in that case? Because whilst autistic mothers of autistic children are relatively common, they aren’t consistently the case. And this doesn’t account in any way for the disparity in the ratio of male:female incidences. Or are autistic mothers simply more likely to give birth to boys?

Or there are way more autistic women sneaking under the radar than anyone guesses.

Where does that leave the ‘extreme male brain’ theory, then? Reduced to reruns on Dave, with all the other Extreme Male stuff, smelling faintly of Lynx Africa and old socks. After all these years, and all we’ve been through, it feels like we’d be a lot closer to understanding if people had paid more attention to Sukharev and Wing and less to the boys trying to make everything fit into a boy shaped box.

But we’re not quite done yet. Because whilst men have been trying to fix things at the ‘causes’ end with little success, down at the consequences end, things have also got a bit messy.

Strategies for managing autism have ebbed and flowed over time, as changes in government and educational emphasis have come and gone, too.

The largest change to the treatment and education of children with special educational needs and disabilities in the last 150 years has almost inarguably been Baroness Warnock’s report of 1978. This was the first major revision of services since the 1944 Education Act in England, which had classified children and young people with “disabilities of body or mind,” into 11 categories, and these then governed their future path in life according to their perceived level of handicap, from those able to be part of mainstream education to those classified as ‘ineducable’.

However, as time moved forward, changes in attitude to childcare, education and advances in psychological and psychiatric thinking led to a transformation in the way children with disabilities were treated. Individually targeted, therapeutic and more holistic ways of treatment allowed progress to be made where cases had been thought intractable. But there was no consistency or overall method of distributing care across the UK, and successes could only highlight more starkly the failures that remained.

Increasing lobbying and pressures from newly organised parent’s groups saw the 1970 Education Act make all Local Education Authorities (LEAs as they were) responsible for ensuring that all those living in their areas had access to educational provision. This in turn led in 1973 to the then Secretary of State for Education — one Margaret Thatcher — to set up an enquiry “to review the educational provision in England, Scotland and Wales for children and young people handicapped by disabilities of body or mind…together with arrangements to prepare them for entry into employment” (Department for Education Science, 1978, p. 1).

The scale of this endeavour is barely hinted at by the fact the final report was presented in 1978, five years after the enquiry began. It was chaired by Mary Warnock, (later Baroness Warnock of Weeke) a senior research fellow at Oxford who had previously had a well-respected career as a headteacher.

The report set out goals for all children in education, and the difference between these and the goals of the original enquiry is marked:

• “to enlarge knowledge, experience and imaginative understanding, and thus [their] awareness of moral values and capacity for enjoyment.”

• “to enable [them] to enter the world after formal education is over, as an active participant in society, and a responsible contributor to it, capable of as much independence as possible.”

The radical shift that had been undergone in those five years shows just how important this report was to be, and how the creation of this enquiry and the appointment of Mary Warnock to this role is perhaps the one of the few truly great decisions made by Mrs Thatcher, certainly prior to her Prime Ministership.

And after.

The Warnock Report led directly to the 1981 Education Act, which set provision for Special Educational Needs and Disability (SEND) on a new path. One of the main aspects of this was a renewed emphasis on integrated education and the inclusion of SEND children in mainstream schools wherever possible, and if this was what the parents wished for their child.

What this meant more practically was that parents had the right to choose mainstream education for their child, many of whom saw this as a chance of ‘normalising’ their child’s education, rather than ‘othering’ their children in special schools. Great advantages could certainly be provided to children’s development socially, and for some children, this was an ideal situation. Parents were the final arbiters of where their children were educated, rather than specialists, however, and mainstreaming was not ideal for every child or every school. Schools with on site ‘Resource Units’, giving a both in classroom and unit based education were an ideal middle ground, but brought their own issues as to exactly who they could and would accommodate. Incidences of need in each area’s cohorts were anything but consistent, and could vary wildly in something as basic as numbers of children needing support from one year to the next.

The one way LEAs could make savings to cover these additional expenses was by closing the special schools and other separate provisions — which now, of course, were suddenly much less in demand. This would ultimately lead to a loss of dedicated centres with equipment and facilities mainstream schools would never be able to provide. There was also a great loss of experienced, often highly qualified staff who could not find a similar place in mainstream education. This loss of specialist skills within the education system was a terrible blow. If later, parents or schools changed their minds about the suitability of mainstream education for a pupil, there was frequently no alternative available any more without travelling impractical distances — if at all.

There were great benefits for many children, however, and this was not just for those who came to schools with a Statement of SEND. More specialist staff in schools and the availability of SEN Coordinators meant that children developing issues or who had unrecognised conditions stood a much better chance of being identified earlier and having suitable provision put in place. Mainstream children also benefited greatly from being educated alongside children with different needs and abilities. Speaking personally to specialist disabled educators who go into primary schools to increase disability awareness, the responses of children at resourced schools and purely mainstream schools differed to a radical extent.

Identification of ‘invisible’ disorders like autism improved greatly by having staff in mainstream schools who could identify issues, make recommendations and advocate for assessments. But whereas with physical disabilities or more profound developmental and learning disorders, the provision and expectation of how education was implemented was relatively clear cut, with behavioural and social/emotional developmental disorders, this was not as obvious.

When looking specifically at autism, the most controversial of these is ABA (Applied Behaviour Analysis) therapy. Whilst this initially promised and sometimes delivered startling results to parents, there were concerns not just about what made this therapy different in how it was delivered, but also in what it said about autism and autistic people. ABA was offering parents a ‘cure’; fixing their broken children and getting rid of the behaviors that made them different to their peers. This was to give autistic children the best chance at ‘fitting into normal society’ and becoming able to do basic tasks for themselves — when otherwise they might have needed more support — giving them the opportunity to contribute something worthwhile to society. Because that is how we measure an individual’s value, after all.

And we need to stop doing that.

It wasn’t just the parents of autistic children who were concerned by ABA. The development of the internet and information technology had given many autistic adults a place and a well-regarded role in society because of who they were, as people with autism. Communication via websites and bulletin boards gave autistic young people and adults the opportunity to communicate in ways that played to their strengths, and to organise. The autistic activism movement was born, giving autistic people a say in how they were perceived, treated and understood. Autistic adults did not like ABA, or the organisations and charities that promoted it and even got it included it in some mainstream schools.

The issues raised with ABA were not just about how it perceived autism, or caused it to be perceived more widely. Its methods have been compared to training a dog, ‘conversion therapy’ and brainwashing. Whilst it must be stated that the use of physical punishment and electric shock devices are no longer considered the therapeutic short cuts they once were, discipline, reward and high intensity therapy are still standard, and one centre for treating autistic children, the Judge Rotenberg Educational Centre, is contesting the ban that was finally placed on their use of electric shock devices in 2020. It’s worth noting that the centre changed their name after three students died whilst attending the centre. The name they chose was that of the Judge who ruled in their favour when the Office for Children issued an order to close the Behavioural Research Institute, as it was then known, after the second death. Ole Lovaas, the psychiatrist who created ABA and promoted both the use of punishment and ‘aversives’, including those same electric shock devices strapped to children, eventually personally stepped back from promoting their use, telling a CBS interview in 1994 that, “These people are so used to pain that they can adapt to almost any kind of aversive you give them.” Which is… a reason. And perhaps demonstrated very tellingly how unsuitable and poorly judged a treatment for autistic children and young adults it was

ABA now stresses the use of reward based training, and it is not easy to find reference to their continued use of positive and negative punishments, although they are still part of their philosophy. Some parents, activists, psychiatrists and autism specialists take exception to the way the reward system is enacted, as well. Children are constantly given small treats like sweets or dried fruit throughout the day for performing asked for actions like copying simple gestures on command, or sitting at a table with their hands still. This is based directly on B F Skinner’s work with animals, and reward and punishment based reinforcement. It should be mentioned that Skinner concluded that punishment was not a useful or reliable way of reinforcing behaviour, even in rats and pigeons.

Also in ABA, great emphasis is put on training out stimming behaviours. To people with autism, this was a clear signal that these behaviours, as well as autism itself, were seen as somehow ‘wrong’ and unacceptable in society. The talk of ‘fixing’ and ‘curing’ autism felt like a call for eradication, closer to eugenics than therapy.

One of the largest leading autism charities, AutismSpeaks, was roundly condemned by autistic people, their families, carers and doctors for not only heavily promoting the use of ABA therapy and its ‘miraculous’ results, but also for how the very large sums of money it raised were being used, and because, unlike a growing number of other autism support and advocacy groups, they did not involve autistic people at any stage of their planning, direction, or consultation. They have since been working to correct this perception, but it remains that the majority of the ASD community have no time for them at all. That said, there are concerningly still centres, therapists and even education authorities using ABA in the UK, and they are still working at reforming their image, as this recently released, poorly disguised promotional piece for them demonstrates.

I don’t want to end on a negative note however, and there are many great people and organisations working tirelessly to improve the lives of autistic children and adults, many of them led by direction and consultation with autistic people themselves. Positive images, stories, films and tv series exist, and are becoming more thoughtful and nuanced all the time. If you would like a small idea of the way that autistic people – even those who might seem quite isolated by their condition – are uniquely able to feel, see, hear and experience the world, then you are much better off watching the hauntingly lovely The Reason I Jump than the execrable Music.

And if you want to know about some more positive links between music and autism, then the OSJ provide a great service, and the Musician’s Union have this great page, too.

Autistic people are increasingly able to advocate for themselves and make decisions about how they want their community to be represented, and there is no better time than Autism Acceptance Month to remind ourselves how far we’ve come — and how far we can go.

*I’ve left this out of date link here because it did actually make me lol. If only funny old Dr Asperger were around today, indeed…

**Cue me spending ages looking for his twitter, before remembering he blocked me.

***How many Baron Cohens do you think there are? Of course it’s the same family. They’re cousins.