Its time to embrace autistic expertise

It’s been a while since I was moved to commit a big rant to (digital) paper — am I mellowing with age, or just short on time?

In any case, an article was published this week which has moved me to prioritise writing a rebuttal, because I think the arguments made are so false, and so damaging.

Here’s the piece in question. In it, the author claims that we need to split the current broad diagnostic category of “autism spectrum disorder” in to two sub-groups. She argues that doing so would enable more support to accrue to what she labels as people with “profound autism”. In fact she goes further, stating that the current broad autism umbrella has “created rancor and ill-will”.

There are a number of ways to counter this proposal, and others have written eloquently about the problems with terminology like “profound autism”. This labelling creates a false and misleading dichotomy within autism, as well as taking us away from more precise terminology which references intellectual capacity, communication or support needs. For an excellent and more detailed version of this argument, I’d recommend this piece by master analyst Ann Memmott. It also denies the existence of the millions of autistic people who sit between two purported extremes, and the variability in support needs for any individual, across settings and stages of life. You can read this piece from the always-superb Thinking Person’s Guide to Autism, and this article from a global network of autistic individuals and autistic-led organisations for more detailed arguments against the language of “profound autism”.

My main concern with the perspective laid out in this article however, is how much of a missed opportunity it represents. There is so much to be learned from autistic people who can describe their inner experiences, and thereby help the rest of us better understand those who are less eloquent.

There are multiple excellent examples of this happening systematically as well as on a smaller scale. Autistic people and autistic-led organisations have been at the forefront of the #StopTheShock campaign against the continued use of electric shock in residential “care” settings such as the Judge Rotenburg Center in Massachusetts. Autistic Doctors International is a fast-growing, expert and passionate collective, working to use their combination of lived experience of autism and professional clinical expertise to improve access to healthcare for all autistic people. The National Autistic Taskforce in the UK “was established in January 2018 to give autistic adults a stronger voice in the decisions and directions of our own lives — especially those with highest support needs and, often, least autonomy.” They meticulously developed, published and are now working to implement an Independent Guide to Quality Care for Autistic People, living or spending their days in social care settings. In every case, these groups are entirely led by autistic people, driven by a powerful sense of kinship and deep empathy for their fellow-autistics who don’t have the same opportunities for advocacy.

Autistic researchers are another key example of the power of unity across the autism spectrum (or constellation, as it has perhaps more accurately been called). They particularly deserve our praise because, as has been thoughtfully and boldly described, the experience of being an autistic person who studies autism is frequently distressing. We should be both amazed and deeply grateful when autistic academics choose to spend their careers investigating phenomena such as autistic vulnerability to abuse — as in this piece of research (which included non-speaking participants). In my own team, one autistic PhD student is building on our previous work examining autistic-autistic communication, to explore the communication and social interaction preferences of autistic people who require full time support to be safe. The ethnographic methods being adopted in this study would be, in my opinion, literally impossible for a non-autistic person to deliver authentically and accurately.

Numerous other autistic people spend their days working to understand and support others. Autistic parents to autistic children with an intellectual disability are one group consistently erased from existence, despite the fact that we know that the genetic basis of autism means that autistic children are particularly likely to have autistic parents. In an ongoing study, we have been interviewing autistic parents and I hope this will be a part of a growing field of enquiry as more and more academics recognise the important combination of perspectives that they can bring to work aiming to support autistic children. Thousands of autistic teachers, speech and language therapists, occupational therapists, counsellors, politicians and more are all working to use their unique combinations of personal insight and professional skills to improve quality of life for those so rarely accommodated in our society. On twitter a colleague noted how important it is to have “better training, more funding into support, research that meets the needs of ALL autistic people…” — and I am sure she would agree that we cannot deliver quality in all these areas without ensuring that autistic people are meaningfully involved. Not instead of non-autistic parents, but as well.

I’ve experienced the benefits of this pan-spectrum insight more personally as well. I lead a holiday scheme called SuperTroop, which provides residential holidays to children and young people with a learning disability. The children who come on our holidays need 24/7 one-to-one expert support. They may become distressed, despite our best efforts to avoid this, and express that distress through aggressive and self-injurious behaviour. The years I have now spent talking with, reading about and learning from autistic perspectives have been invaluable in delivering this holiday scheme effectively and safely. Holiday-makers, including those whose expressions of distress can be intense, sprint onto the site at the start of the week. We hold an open day each year but many families do not attend, for fear that their child would not cope with realising they were visiting for a few hours and not a whole week. One has created his own Sign-a-long sign for “SuperTroop”.

At home as well, as a parent to an autistic child myself, I have been led hugely in my parenting by the insights I’ve gained from autistic people describing their experiences. It’s true that my daughter is rapidly becoming an accomplished advocate and I expect I’ll see her speaking at a conference one day. But still, we often find ourselves stuck, unsure how to find a way through a stressful experience. Every time, I turn to autistic friends, colleagues and complete strangers on twitter and every time honest, empathic and kind advice comes flooding back.

I simply cannot comprehend why the crucial and unique revelations of autistic people are being rejected in this way. Raising an autistic child who “is minimally verbal and suffers from painful self-injurious behaviors, intellectual disability, aggression, anxiety, sleeplessness and seizures” must be incredibly hard — why turn away such an amazing source of insight? The author seems concerned about the needs of autistic people like her own daughter being over-shadowed. But research and practice has been failing autistic people of all kinds for decades, promoting models that stigmatise more than they support. All of this happened largely without the input of any autistic people at all. A shift of approach is badly needed, and the inclusion and leadership of autistic people in that endeavour must be welcomed with open arms.

I think the neurodiversity paradigm can drive that shift. Crucially, neurodiversity advocates do not want to “defund and deprioritize medical research, block access to treatment and clinical care, censor necessary and accurate scientific language, and advocate for policies that cause real harm…” but instead work to de-stigmatise autism and disability, and promote autistic rights. Crucially, these rights include rights to medical treatment, diagnosis, and self-determination via whatever means are most suitable. As Robert Chapman writes, “we must work on allowing more space for individuals and groups to self-define as healthy or ill, different or disordered, perfect or broken, in need of either medical or political intervention, or whatever combination of these.” Neurodiversity emphasises the equal value of every human being, regardless of their needs, their communication profile, or the ways in which they express distress, or manage anxiety. If someone thinks the neurodiversity-informed principle that all humans have equal value excludes “those who will not and cannot ever live independently” then there is something wrong with their value system, not mine.