On becoming the Wicked Witch of Autism
Earlier this year, I went to see Wicked at the theatre with my daughter. I had no idea what it was about in advance except that it led into The Wizard of Oz. I expected it to be a light evening’s entertainment.
As I watched, I was astonished to find myself in tears. For those of you who haven’t seen it, Wicked tells the story of Elphaba, a witch born with green skin. As as adult, she discovers inconvenient truths about the Wizard of Oz and his fakery, as well as the widespread oppression of talking animals in Oz. She speaks out, and as a result everyone turns against her. She is targeted, vilified and leaves Oz in a blaze of music and broomsticks. She becomes the Wicked Witch of the West.
Glinda, on the other hand, chooses to toe the line and keep in with the Wizard. She allows Elphaba to take the rap. She becomes the Good Witch of the North. Everyone worships her.
And from there we go into The Wizard of Oz. It’s a brilliant subversion of the simplistic narratives of the original film.
So why was I in tears? I had just agreed a book deal with Little, Brown. The book is called This Explains Everything: How Autism Expanded and Why That Matters to Everyone. It tells the story of how autism morphed from a rare neurodevelopmental disorder to a social and cultural phenomenon, and asks what the consequences are of this for all of us.
It’s for a book that I have felt I needed to write for a while, but I had considerable fear about the implications of doing so. I was seeing many things in the autism world which weren’t right and which, it seemed to me, we were not talking enough about. Claims, which - like the Wizard - were based on smoke and mirrors. Vulnerable people who were being left out and silenced.
Last year, after several conversations, I realised that I was at a crossroads. I either needed to write the book and stand up and be counted (and probably vilified), or choose to keep quiet and let someone else take the rap.
Elphaba, or Glinda.
Why did I choose to go the way that I did? I could locate that in myself, perhaps even calling it neurodivergence. I could say that part of my own psychological make-up is that I have always had a tendency to run in the opposite direction to everyone else, to refuse to keep quiet. I could say that I have a deep sense of needing to speak up against injustice, perhaps honed by my childhood years in southern Africa, when apartheid dominated the region.
But I could also locate it in what I saw around me. For I talked to people who were deeply concerned about the way that the conversation about autism was going – and how impossible it was to have any sort of balanced discussion about it. I talked to clinicians who were terrified to speak up because they thought that they might lose their job. I spoke to researchers who told me that they woke at night sweating at the thought that they might have inadvertently used the wrong language on their slides. They feared they would find themselves cancelled as a result. I talked to parents who felt completely excluded from the new ways of understanding autism.
I also realised that most people did not have the background knowledge that I had about how we got here. Many were mystified by these new waves of autistic people arriving at the door of mental health services.
I found it confusing myself. I first studied autism as an undergraduate at the University of Cambridge in the late 1990s and I was immediately fascinated. So much so that I dropped out of studying medicine to do a PhD in developmental cognitive psychology, focusing on autism. I then did a doctorate in clinical psychology, and that took me out into the clinical world and away from research. There, I specialised in trauma. After some years away when I had my children, I came back to the autism world to find it profoundly changed. The very language was altered.
I noticed something was up when I ran a training session for a major teaching hospital. My slides were checked by an expert-by-experience, who corrected me. I could not say ‘person with autism’, nor could I say ‘diagnosed with Autism spectrum disorder (ASD)’. I must say ‘autistic person’ and ‘recognised as autistic’. Autism had become an identity while I was off having babies.
I never met that expert-by-experience and there was no discussion. I don’t even know what their experience was. I was simply told that I needed to up-date myself and that attitudes had changed. I took it very seriously. I read books written by autistic adults, and attended their online courses. I found the style guides and got rid of words like ‘deficit’ and ‘impairment’. I talked of differences not disorders. I realised that my claim to be knowledgeable about autism was in itself questionable, since I did not identify as autistic. I read articles which suggested that I should forward any future requests for training on autism to those with lived experience, as they were the true experts in autism. For a while, I believed it.
I discovered that over the years since my PhD, autism had changed dramatically. Then, I still had to explain to some people what autism was. I hunted for children to include in my study in the specialist schools of London. Now, I hear about autism everywhere. There’s Autistic Barbie, and autistic social media influencers write best selling books and have huge platforms. Celebrities regularly announce their autism diagnoses and explain how it has transformed their life.
In that time, diagnostic rates have sky-rocketed and autism has changed. Quite clearly, autism had changed. The autistic adults I met now and whose stories I read bore little relation (for the most part) to the children I had met in special schools or the adults I had got to know when I lived in a residential community in France. Those people were not going to write books or create online courses about their experiences.
Yet somehow, we couldn’t really discuss what had happened. Everyone was talking as if the changes were due to us discovering new insights about autism, while it seemed more likely to me that autism was expanding to include people who had not been there before. Masking, for example, meant that now we could diagnose people who had had minimal signs of autism as a young child - or who had shown autistic behaviour as a child, but in adulthood did not. The idea that autistic behaviour could be masked at great personal cost had been accepted by everyone, it seemed. But to me, with my background in developmental cognitive psychology, this raised serious questions.
Childhood symptoms of autism include things like not engaging in imaginative play, but instead playing repetitively. Communication difficulties to the point of not acquiring language, or highly idiosyncratic use of language. Not pointing to things to share them with another person. Not showing an interest in faces as a baby but instead focusing on objects.
Was it really possible that a young child could mask those symptoms in order to fit in better with those around them? And if that was happening, then surely masking was a highly sophisticated social strategy - and didn’t we define autism as (partly) a deficit in social cognition? The very idea of fitting in better is something that most young children, whether autistic or not, are not really troubled by. Toddlers are some of the most unmasked people in our society. Their emotions are on full display for everyone as they lie down on the pavement and show us how they feel. Worrying about what other people think comes later. Masking in early childhood would mean that autistic children were more socially sophisticated than other, non-autistic, children their age.
I thought back to the autistic children I had met when doing my PhD. Their lack of social niceties (or masking) was one of the most obvious things about them. They had no filter, as it was often put. I remembered Adam, who I volunteered with for two years. He would end our meetings with ‘Naomi, I’ve had enough of you now’ and I would know it was time to go.
I really don’t think he was masking.
Autism meant something different now, and yet we were all behaving as if it didn’t. And we couldn’t discuss it. I wrote an article questioning the idea that all autistic people mask. This was enough for people to tell me that I didn’t understand autism and wasn’t listening to autistic people. I wrote another piece, questioning the idea of ‘neuroaffirmation’. Professionals all around me were saying that their practice was neuroaffirmative - but definitions of what this meant differed wildly. I wasn’t sure that it added anything useful to clinical practice. I was told that my writing was dangerous, and that people would no longer recommend me as I was now unsafe. I was blocked on social media by people who I had thought of as colleagues.
It seemed deeply unscientific, and yet I saw people all around me adopting the new way of thinking and talking about autism without, it seemed, any qualms at all.
I couldn’t stop thinking about Adam, and the adults I lived alongside in France. Where were they in this new autism world order? I was pretty sure they were not being employed as experts-by-experience and their lives were not reflected in the books I read. It had always been hard to elevate their voices, and now it seemed to be impossible.
I realised I couldn’t even describe them. The words used before had been reframed as problematic and using them now would be enough to get you cancelled. People did not like to be described as high functioning or mildly autistic because they felt that it underestimated their level of disability - which meant that others could not be described as lower functioning or severely autistic, because that contrast was the problem. Some people argued that there was no such thing as severe autism, but only co-occurring learning disabilities. Autism, they said, was the same severity across the spectrum. This seemed to be more ideological than scientific. Others strongly disagreed.
There were too many contradictions, and yet pointing them out was met with vitriol. ‘Vile’ as one highly influential activist put it. There were conversations that I felt that we desperately needed to be having, but we weren’t having them for fear of the reactions. For fear of cancellation.
As I said at the beginning, I’ve never been one to run with the crowd. I grew up between cultures, living overseas yet still English. I returned to the UK as a teenager, and had immediate culture shock. I think this gave me an outsider perspective on our culture, but also the continued capacity to ask ‘Does it really need to be this way - and what if we did it differently?’ I apply this lens to everything that I do.
In this book, I’m asking those questions about autism. We’ve expanded the autism spectrum to include many more people, with the assumption that this will be a good thing. This is a massive societal shift with all sorts of implications - and it’s not clear whether it’s helping people in the way that is intended. Autism has become an explanation for so many people, but is that really leading to better outcomes for all?
If we honesty want to find out then we (and by that I mean me) have to face our fear of asking difficult questions.