Autism, Superpowers and Disabilities

"Given the right circumstances, being different is a superpower." Greta Thunberg.

Greta Thunberg holding her first climate strike, August 2018, outside the Swedish parliament

When Greta Thunberg compared her Autism to a 'superpower', she thrilled a growing movement of neurodiversity advocates, eager for another prominent spokesperson to proudly show the world that autism is a difference not disability. It is an approach that has informed the direction of travel for a great deal of SEN policy and practice in the 21st Century so far. Dyslexic students are described not as having a learning difficulty but as having a dyslexic-type learning preference. The philosophy of neurodiversity is quite simple: Different people's brains work in different ways. For people on the spectrum of dyslexic type difficulties, this will mean a preference for visual, kinaesthetic learning activities. For many on the autistic spectrum, this will mean a preference for routine and predictability, reduced sensory stimuli, tangible learning aids and so on.

It is a view that explicitly foregrounds the social rather than the medical model of disability; if there are problems then they lie less within the individual and more within their environment. Within each and every individual is the potential for fulfillment and a rewarding life, as long as the external barriers around them are sufficiently removed.

The first time I became aware of the contention around this view was in the early 2000s when cases emerged of deaf parents refusing cochlear implants for their deaf children. Parents who wanted to raise their child as belonging to the deaf community; parents who saw deafness not as a disability but as a different way of being. More recently however, I have had to engage personally with this debate when it comes to how I discuss autism with the children, parents and professionals with whom I work on a daily basis.

Just before Christmas I fell into conversation with a colleague of mine whose brother was severely autistic. He pulled me up when I quoted Thunberg's line, vehemently arguing against her suggestion that autism should be considered her 'superpower', accusing me of romanticising what was, for his family, little more than an intensely debilitating condition. Instances like this test the neurodiversity angle. Without speech or mobility, it is hard to envisage how the world could be arranged, even in theory, to make it seem like anything other than a medical disability. Last year the National Council on Severe Autism (NCSA) was set up in the US, as part of a backlash against a progressive movement they regard as failing to recognise the extent of the support necessary just to meet the most basic of functional needs of some people with autism.

Dec 2019: Protesters in Ontario, Canada, voicing their dismay at the regional government's decision to delay therapy for children with autism until 2021.

One issue that is compounding the matter is the chronic representation of autism both in the media and, more surprisingly, in clinical trials. One 2016 study found that, across 300 studies in autism specific journals, looking at over 100,000 autistic participants, only 6% of those identified as autistic actually had a learning disability. Globally, it's estimated that this figure is about 50%. This suggests that there is a systematic selection bias amongst autism research that favours the high-functioning participants, and neglects the ones with more profound and complex needs. Just like in media portrayals, from Rain Man to Sheldon Cooper, we prefer our autistic heroes to be a certain way - quirky, humourous, gifted. Anything really challenging, severely debilitating, makes us feel too uncomfortable, so we prefer them hidden from view. Out of sight, out of mind.

Then, stumbling into this debate, comes the latest issue of 'GetWell' magazine (formerly 'what doctors don't tell you'), which faced an understandably furious backlash after its front cover offering the chance to 'reverse' autism, and 'reignite' your child's brain.

"My daughter is well. Her brain is fully ignited - and firing such that she creates and thinks in ways that inspire and astound me daily. Scrap this ableist shit now #autism" (Sophie Walker, founder of Women's Equality Party, took to Twitter on seeing this at her local Waitrose)

When I tweeted Waitrose to say they really shouldn't be displaying material like this, I was invited to consider some of the counter-arguments, including the following: if public policy continues to encourage a shift away from the medical model, from disability to difference, then it allows governments to remove or reduce funding that might otherwise have gone towards supporting people with more easily diagnosable disabilities. Accepting people as they are is certainly cheaper than funding the search for a 'cure'. Might there be 'treatments' out there that we are missing, out of our fear of labelling someone with a medical condition?

And I've also spoken to parents who are desperate to have the severity of their child's needs formally recognised. Parents who really do not want to hear the 'romanticised' message of difference and neurodiversity. Parents who are desperately looking for answers, wherever they might be found.

We owe it to our kids to get this right. The problem with the page above, aside from exploiting the desperation of parents of autistic children to peddle 'alternative' treatments like ECT and ABA, is not that someone is looking for a 'treatment' per se, but that they have failed to separate the autism from its disabling aspects. The cover, visible to any child who happens to be walking past, presents autism as something that should be reversed, treated. Definitely not something that should be celebrated. With the children I work with, aged 11 - 16, their identities are so malleable. They are still in the process of developing their identity as autistic young people, and the way these messages filter down to them at certain critical moments in their development could determine whether these identities are inflected with success and heroism, or by hardship and exclusion.

'Rien Que Pour Nous' by Géraldine Pérol

And let's not forget that many of the students I teach don't have formal diagnoses of autism for no other reason than because they come from families where the fear of whatever social exclusion and ostracisation such a diagnosis might bring renders the entire topic taboo. Annual review meetings with parents and professionals come and go, the A word hanging in the air like some spectral fog, seeping into every area of the child's difficulties, but forever remaining nameless and unspoken.

The fact is, autism is not a superpower or a disability. To definite it in either terms is to lose a vital degree of nuance in this debate. If we downplay the disability aspect of autism, then we are downplaying the very real and often significant difficulties that even high functioning autistic people have to face on a daily basis. Many within the autistic community speak of the 'exhaustion' of getting through the day, and that this is not adequately reflected in the philosophy of neurodiversity. But downplay the strengths and potential of people with autism, and you risk pushing children and young people into a negative self-perception that could be just as limiting as the condition itself. The author Judy Endow puts it best I think when she says "As an autistic person when I am asked to choose one – either “disability” or “difference” – I feel like I am being asked, in essence, which part of me I would like to ignore."

Scission by Myfanwy Johns

So I think what we need to do is two-fold: Firstly, we need to separate autism from its associated disabilities so that we are able to regard them as two separate things. And secondly, we need to choose our language much more carefully depending on where and when we are using it. Autism, in the words of Simon Baron-Cohen, may 'co-exist with disabling characteristics', from gastro-intestinal problems, to crippling anxiety, and even those with high-functioning autism may suffer from disabling social and communication problems. Let us, amongst other professionals, and alongside concerned parents, talk about these difficulties, and crucially apply suitable pressure on the state to ensure that sufficient resources are allocated to ameliorate the lives of anyone who is suffering as a result of them.

But in front of children, or anyone who is still coming to terms with a new autism diagnosis, let us speak of nothing but difference, and let us foreground the strengths that such differences can produce. We need to show young people with a new autism diagnosis that it can be a gift, that it can be a superpower. Because young people can often find themselves at a junction of different paths. And depending on the language that is used, our words can either lead them to retreat fearfully from the world, or, just maybe, to step forward and try and save it.

Greta Thunberg addressing a crowd of supporters in New York, Friday, Sept. 20, 2019, ahead of a U.N. summit. (AP Photo/Eduardo Munoz Alvarez)