Musing on ableism, neurodiversity, shame and superpowers

Photo by Caleb George on Unsplash

Musings all start somewhere. This one starts a week before one of the many conferences, this one about neurodiversity, where I spot the word 'superpower' appearing in the title of one of the talks. That word creates a storm of questions in my head. Is Autism a superpower? What about ADHD? Is my neurodivergence a superpower?  I am a strange confluence between OSDD, ADHD and Autism, without properly belonging in any one of those camps. What I am however is a Gestalt Language Processor [1].

​As a very young child my Mother was worried my educational destination was the local ‘special school’. It was the place where people like me, who had a vocabulary of only 4 words ended up. One night my Mother was pushing me home, because walking wasn’t something I willingly did either, when the street lights went out, and I shouted “Shilling’s gone!” In 1969 the lights in my house would go out frequently because we had forgotten to fill the coin meter. In my pushchair outside I realised that these were two similar events and so repeated the oft used phrase. Rather than understanding the meaning of individual words and combining them in a sentence, which is how children generally learn language, I am using delayed echolalia to repeat previously heard phrases or words. This is known as Gestalt Language Processing, and I still do it. I think in patterns which I then search for words or phrases which match the pattern. It’s this ability which has written this article. There was also the somewhat obsessional focus which meant asking everyone I knew. That helped too.

What my pattern matching brain knows is that words have power, they do things. This isn’t a new idea, or even really mine. It germinated in a lecture called “How to do things with words” given by J.L. Austin in 1962, and arrived for my consumption in a book by Nicholas Royle about my favourite philosopher, Jacques Derrida. Austin’s idea is that we have two kinds of speech. One is constative, a mere statement of fact, while the other is performative. This later type has a peculiar and unexpected quality. 

A performative utterance is when you not only say something, but do something by saying it [2]

In my case ‘Shilling’s gone!’ performed the action of saving me from going to the ‘special school’. To my Mother it wasn’t just a story, it was also a piece of armour she could wheel out if my teacher noticed the strange little boy sitting at the back of class seeming not to listen.

Superpowers is a potent performative, which is why people like Trudy* use it. She is a fellow dog walker, whose day job is to find educational placements for additional needs children. For me she is a must ask person. She tells me, “If I didn’t ask Finn*, what’s your superpower, I would never have got him into a work placement.” She explained how this question helped her to quickly build rapport, and how it went on to help Finn to see himself in a much more positive light. 

​Using superpowers can counter the stigma associated with being neurodivergent, where being ‘special’ often isn’t a very special experience. Grace* described how a chance encounter changed how a mother saw her Autistic teenage son. Grace said it was difficult to hear, because the mother “shouldn’t have to meet an older Autistic person to have hope for her own son’s future.” Grace explained how, “the view that neurodivergence is a superpower is probably helpful for those who keep being told that their neurodivergence will only hold them back.” ‘Only hold you back’ and it’s allied narrative ‘wouldn’t amount to much’ are the kinds of performatives which can take away hope from a mother and her teenage son. 

Shame, denial and the cloak of invisibility

​​A while later, I am sitting with Ria*, who is described as a ‘gifted student’. Final exams are coming up and Ria has been riding on the edge of burn out for what seems like forever.  She feels quite flat, so I ask her what she thinks about Autism as a superpower. Ria becomes animated as she takes me on a deconstruction of this word, before bringing it round to how it impacts her, as she says simply,

​I am an ordinary person

When Ria tries to tell her teachers just how close to collapse she is, they look at her and say “No you are alright, try and take a break from working.” Her neurodivergent ability to memorise vast tracks of information which make her the ‘gifted student’ has also served to make her struggle invisible to her teachers. 

Sophie* will often bring her insights into the therapy room. She is another must-ask person. When I ask her if Autism is a superpower, she sits there slowly shaking her head. She later sends me her thoughts on this subject, which take us beyond invisibility, and firmly into the realm of ableism.  

​I'd go as far as to say that non-disabled don't see disabled as people. There's a detachment like seeing cats or dogs. Seeing superpowers evidence this. Disability can only be extraordinarily unhuman or nothing. Never just people with the non-disabled people.

​As Sophie points out using superpowers is itself alienating. Superhero’s in popular imagination are almost never human. They are typically either literal aliens, like Superman, or their humanness has been altered through some fantastical process to become beyond human, like Spiderman or the Hulk. She also explains what she sees as the real purpose of a superpower narrative.

​'Seeing' is the key word here. Seeing a superpower can serve non-disabled, seeing disability is uncomfortable, raw and dirty. Rather than looking at how disability highlights all the ways in which society works against it, which forces people to challenge their world view and detachment from anything unfamiliar. Concepts like superpowers are enforced by non-disabled, onto the disabled to make it look pretty.

​Sophie’s critique of superpowers isn’t just how it makes the rawness of disability invisible, it also acts as a system of denial to prevent us from examining our own attitudes which are serving to reinforce an ableist environment.

A few days later, Ann* is telling me about a conversation she had with her son, Nate*, about Autism being a superpower. As I am writing this, a thought shouts in my head “Who the fuck haven’t I asked!?” I have that hot shame feeling of getting it wrong, of doing therapy wrong, because me, I am wrong! My pattern matching mind, which won’t let this go, my superpower if you like, is the source. Having a superpower doesn’t really protect me from shame, but what Nate says does. 

Nate has this ability to penetrate to the core of whatever something is, and relay it in simple terms. He says “I don’t think Autism is a superpower, it’s just a difference”  

Neurodiversity as a Performative

​While superpowers is something which comes from outside, the term neurodiversity, was created by neurodivergent people themselves. Whether it arose by the efforts of individuals, or as the collective effort of online autism advocates is a piece of disputed history[3]. Judy Singer who has been credited with developing the term describes neurodiversity as a ‘biological truism’[4]. I personally like to use this shorter description as a foundation. 

Human beings are a neurologically diverse species 

​This is a paraphrase of Singer’s and other’s definitions. This simple description becomes performative when so much can be hung on it. 

Being human means amongst other things, being neurologically diverse. So not only do we form highly complex social groups, those groups are formed of people whose neurology diverges significantly from each other. Difference becomes a fundamental human quality. We are human because of the very fact we are different from each other. Even if it is only one possible history, the idea it arose as a collective event reinforces the notion it belongs to us all. Some, like Harvey Blume, have even postulated that neurodiversity has contributed to our evolutionary success[5]. We are all in this description, each and everyone of us, no one is outside. Within this framework Ria becomes an ‘ordinary person’ whose memory system is one type amongst many human variants. A superhuman narrative by it’s very nature sits on the outside of a neurodiversity framework, and for me logical consistency really matters. 

If you are working with neurodivergent people then you are very likely to be working with shame, which is true of much therapy. When I think about shame, I like to use this question, “What is the opposite of shame?” I like the way it makes me think about the nature of shame, because the answer clearly isn’t shameless. When I think about Nate’s answer, and I think about neurodiversity being difference, and how that difference is fundamental, then the answer I get is acceptance.   

Being wrong, not being like other people, finding things hard when others seem to find it easy, can all too easily turn into shame places. And then there is the conversation about the Autistic and ADHD kids and how the young person in front of me isn’t anything like them. Shame is at the root of much Autistic Masking, as well as neurodivergent masking in general. Masking here, is much more than simple fitting in, it is according to Kieren Rose “a trauma response to stigma, invalidation and marginalisation.”[6] 

A neurodiversity frameworks widens what it means to be human. It counters the alienating force of disorders and conditions, and maps pretty neatly onto a humanistic therapeutic framework, particularly the notion of essential worth[7]. It gives me a lens through which I can see the human, and once I can recognise the human, then essential worth becomes a given. I no longer need to find a superpower to accept you; I don’t need in Sophie’s words to ‘make it look pretty’.  A neurodiversity narrative contains acceptance as a fundamental assumption, it is at it’s heart an anti-shame approach. Thus my task becomes to grasp just how wide that experience can be, and it can be very wide indeed, as Jim Sinclair points out in his iconic 1993 presentation,

​Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence.

Using a neurodiversity approach requires me to be open to possibility, to be curious about the experience of another, which takes me back to my Humanistic Gestalt training days.  

There is however a trap, or at least a criticism of using a neurodiversity narrative. Framing something as a difference can lead us to miss the impact being neurodivergent can have on a person, especially if it comes to be thought of as ‘only a difference’. A similar narrative form is the ‘everyone is a bit Autistic/ADHD’ This can serve to hide the fact that for some people it’s also a disability, which is having a profound impact on their lives. It doesn’t go away because of noise cancelling headphones. Meltdowns are a fact of life for many neurodivergent people, as is living in a near constant state of anxiety, or even a dissociated haze. A life where no one gets how much energy it takes just to turn up at tutor for 9am; or look like you are concentrating; or managing sudden changes; or having to walk into a wall of noise, and all in a single day.    

Being seen really does matter, being validated, and having someone who gets how big a deal it can be, is in and of itself healing. Being seen matters to Sophie, it matters to the other young people I see too. Sophie’s words remind me not to be tempted to pretty things up, but to stay in contact with the ‘uncomfortable, raw and dirty’.

While I can see that superpowers and neurodiversity are both aiming to reduce stigma and shame. My view is that using a neurodiversity narrative is more thorough, better enmeshed in typical therapeutic practice, has fewer downsides, and is also more flexible. My view is that ‘searching for superpowers’ carries a risk of creating a therapeutic rift between you and your young client.  

From a personal perspective I don’t have superpowers, it’s just what I do. To me, it’s ordinary. Neurodiversity on the other hand feels like it belongs to me. It takes me from always feeling like the odd one out, to a world where I get to be the odd one in. 

​*Names have been changed where required in order to preserve the privacy of the people who have contributed. All the voices used come from a neurodivergent perspective. ​

References

1 Prizant, B. Publications on Echolalia and Gestalt Language. Dr. Barry M. Prizant. [Online]. Available from: https://barryprizant.com/resources/downloads/echolalia-articles/ [Accessed 1 August 2024]
2 Royle, N. Jacques Derrida. Abingdon: Routledge; 2003
3 Botha, M, Chapman, R, Onaiwu, M, Kapp, S, Ashley, A, Walker, N. The neurodiversity concept was developed collectively: An overdue correction on the origins of neurodiversity theory. Autism [Online]. 2024; 28(6). Available from: https://doi.org/10.1177/13623613241237871 [Accessed 31 July 2024]
4 Singer, J. Neurodiversity: Definition and Discussion. Reflections on Neurodiversity. [Online]. Available from: https://neurodiversity2.blogspot.com/p/what.html [Accessed 31 July 2024]
5 Blume, H. Neurodiversity, On the neurological underpinnings of geekdom. The Atlantic. [Online]. 1998; September Issue. Available from: https://www.theatlantic.com/magazine/archive/1998/09/neurodiversity/305909/ [Accessed 1 August 2024]
6 Rose, K. Autistic Masking and Autistic Burnout. The Autistic Advocate. [Online]. Available from; https://theautisticadvocate.com/autistic-masking/ [Accessed 1 August 2024]
7 Whitton, E. Humanistic Approach to Psychotherapy. London; Whurr Publishers Ltd 2003
8 Sinclair, J. Don’t mourn for us. Our Voice. Autism Network International. [Online] 1993 1(3). Available from; https://philosophy.ucsc.edu/SinclairDontMournForUs.pdf [Accessed 1 August 2024]

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