By The Autistic Advocate
I’ve just finished reading John Harris’ article in The Guardian framed around the theatrical version of ‘The reason I jump‘, Naoki Higashida’s famous book about his Autistic experience.
You can find the article on The Guardian, entitled “Enough ‘autism awareness’. The necessity now is action.” and I do recommend you read it before going any further with this article.
A note about the film:
I’ve had the privilege of watching it and it is beautiful in many ways; a synaesthesiastic orchestra of visual and auditory sensory information. It expresses valuable insight into Autistic people in a variety of ways, particularly Autistic people who are unreliable speakers. It’s like a work of art focusing on insight, communication and a whole way of life.
You do not need to have seen the film in order to understand either John Harris’ article or the points I’ll make, though I do recommend you see the film if you can.
I’m going to pre-empt criticism of everything I am going say next, by saying this:
Not all publicity is good publicity and if we cannot steer and critique the work of those who claim to be our allies, then they are not our allies. Just because something is *more* favourable does not mean we should rest on our laurels.
I do not settle, I do not rest. I hope eternally, in the words of Dinah Murray, that I remain a productive irritant for as long as I live.
The focus of John Harris’ article is only framed around the film, using that as a tool to hone in on the need to move away from Autism ‘Awareness’ to something more constructive and useful, which Harris defines as ‘action’. This is something I agree with wholly, which is why I’ve been part of pushing for a move away from the passiveness of ‘awareness’ to the activeness of ‘acceptance’.
As somebody smarter than me once said:
“Awareness is knowing about something. Acceptance means you give a shit”
Harris’ article comes from a place of excellent intent and its gladdening to see such an attempt in a Newspaper whose previous work on Autism was to set the understanding of it back twenty years, when it posted the unevidenced, deeply flawed, bizarre and damaging ranting of Thomas Clements, about his misinformed hatred for the Neurodiversity Paradigm.
Harris himself has skin in the game as a parent of a non-speaking 14 year old, which makes this an attempt of ally-ship.
Unfortunately, good intent does not always mean good outcome and, for me, this article falls far too short of providing anything close to useful in terms of moving the conversation forward.
The issue is that ‘Awareness’ is mostly performative, a point that the article makes (in different terms) before ironically taking that performativeness to the next level.
One of the main thrusts of Harris’ arguments is that:
“Self-evidently, autistic people remain marginalised, misunderstood and far too often denied what they should have as a matter of basic entitlement.”
I agree, how could I not. But that statement in and of itself is meaningless without the context to reinforce it.
One of the biggest reasons that Autistic people remain marginalised, misunderstood and denied basic rights is because we’ve been excluded from our own narrative for so long. Our ‘voices’ have not been incorporated into the stories, research and services around us; its all been done from an outside perspective and based on observational assumption, which has become observational myth.
Which brings me to the main thrust of my point which is Harris’ points of reference for his article.
To underline that Autistic people have been marginalised and excluded, Harris defers to firstly, David Mitchell.
Mitchell is a parent and the famed author of ‘Cloud Atlas’. To my knowledge and research he is not someone who publicly identifies as Autistic.
He deserves kudos for translating ‘The Reason I jump‘ from Naoki Higashida‘s original in Japanese along with the sequel ‘Fall down 7 times, get up 8’, which probably explains why he was the first port of call in the article.
However, in an article focused on marginalisation and human rights, I do find it a little strange that Mitchell has been featured, bearing in mind he is an Ambassador for Ambitious about Autism, the largest ABA (Applied Behavioural Analysis) organisation in the UK.
*In case you are unaware of ABA, it is a normalisation ‘therapy’, historically connected to Gay Conversion Therapy, within a multi-billion dollar industry, that has a research evidence base as reliable and unbiased as the Tobacco industry circa 1950-2000. It is also decried on a daily basis as a violation of the human rights of Autistic people.
I have linked a great resource on ABA at the bottom of this article*
To public knowledge, Lorna Wing did not identify as an Autistic person, but as a Parent and Academic.
Lorna is often described as one of the pioneers of the Autism narrative, which is partially correct. It is also fair to say that we are actively now and will be for a long time, undoing the damage instigated by Lorna’s work, particularly around Aspergers Syndrome and notions of ‘The Spectrum’. Indeed Harrison refers to:
“… Wing’s revelation that autism is a “spectrum condition” manifested in a huge variety of ways, which was developed in the 1970s and 80s and is still rippling through society.”
And its difficult to stop that ripple effect of a flawed idea, missing a boatload of context, from rippling in all sorts of unfortunate ways.
Next port of call is Mark Haddon and his book ‘The curious incident of the dog in the night-time’ whom Harris refers to as having blazed a trail.
The mythos around Haddon and this book never ceases to amaze me.
Haddon himself declared, post publication, on his own blog that The Curious incident of the dog in the night-time was NOT written about an Autistic character and that he (Haddon) had done no research into Autism. In fact he complained in early interviews that the publishers had written the word ‘Asperger’s Syndrome’ on the sleeve cover.
Indeed, the main character, Christopher Boone is a litany of tropes, in much the same way as Raymond Babbett from Rain Man was portrayed. If anything, like Rain man, Boone is a made-up Savant with no basis in reality, but bursting with stereotypes for a marginalised group, desperate for validation to lean into.
To public knowledge Mark Haddon does not identify as Autistic.
We then move onto Steve Silberman.
Silberman is the Author of Neurotribes, a groundbreaking piece of work detailing the history of Autism and Neurodiversity from the perspective of Autistic people and the Neurodiversity movement.
I and many others will always be grateful to Steve for his big contribution to moving us a step closer to being treated as actual humans, instead of humans who are missing parts of what makes humans humans…
But again, to my knowledge, Steve Silberman does not publicly identify as Autistic.
There’s a theme here, which I’m sure you have started to pick up on.
If you haven’t, let me point it out. In an article focused on a marginalised group and talking about the need to move from awareness to action, beyond the film, the points of reference, information and signposting are four non-Autistic people, three of whom are immensely problematic…
We do have then have a cursory nod to Autistic people and an apparently “New(ish) ” movement of Self-Advocacy, via a hyperlink to ASAN (Autistic Self-Advocavy Network).
So we do exist!
Just in case John Harris is unaware, ASAN are not the be-all and end-all of Autistic Advocacy. Indeed Jim Sinclair‘s seminal piece ‘Don’t mourn for us‘ was published over a decade earlier than ASAN’s origin. Sinclair, Donna Williams and others were campaigning, writing and publishing in the 1980’s and 90’s. Even Temple Grandin, divisive a figure as she is now with her very outdated and controversial views published her first book in 1986, twenty years earlier than ASAN.
These people did not exist in isolation, they were organising and with the advent of the Internet in the 1990’s were connecting all over the world.
This is not New(ish). This is established networked advocacy covering five decades, which is given a one word hyperlink, in a short paragraph, in the middle of an article complaining that Autistic people don’t get the attention we deserve. We’re basically a footnote. A wrapper wrapped around a core of non-Autistic drivers of Autistic advocacy and understanding.
A core that excludes the tens of thousands of Autistic advocates working on huge numbers of different levels all over the world to make real sustainable change. From those part-time educators in Facebook groups, to those who blog or You Tube or Tik Tok, to those who speak and train and consult, through to those who have their shoulders wedged firmly against the door of governments.
All with no hierarchy, all equally valuable.
All missing from here.
Which is interesting because I’m assuming that along with mentioning Silberman and Neurotribes, Harris has actually read it? I mean you wouldn’t cite something you haven’t read, would you…?
But if he had read it, he’d know the long in-depth history of Autistic Advocacy I’ve danced briefly across above, because that’s what the whole second half of Silberman’s massive tome is about… So its a curious thing to just gloss over when talking about a marginalised group…
The reason that awareness campaigns are both passive and never really change anything is that they are, either intentionally or unintentionally performative. They don’t lead anywhere useful, or move people on from where they are. There’s no, to little growth. Reasons for that vary, from gatekeeping large charities who use ‘Autism Awareness’ as a way of controlling and dominating narratives and generating income so they can continue to control and dominate these narratives; to people who genuinely want to help and think that *helping* is supporting large charities who control and dominate narratives.
Sadly this article reaches the same level of performativeness as any other ‘awareness’ raising. Its doing exactly what it sets out to challenge, because it presents non-Autistic people as the go-tos. It centres non-Autistic people and some problematic ones at that. How does anyone move on in their learning and understanding, how exactly do you take ‘action’ when all you are doing is listening to the same people and excluding the group you claim to be advocating for?
Its more than that though, it’s the perpetuation of infantilisation; subliminally reinforcing the narrative that we aren’t qualified to comment on the narratives around us, when the ‘grown-ups’ are.
The article ends with a view of what John Harris describes as progress.
“… Significant moves in the right direction”
He talks about the National Theatre, in its stage dramatisation of ‘The Curious incident of the dog in the Night-time‘; yes, derived from that self-same problematic book from before; and how they have decided to advertise for an Autistic lead actor for the show.
How wonderful and forward thinking you might think?
Or you would if you were not aware that the play debuted in 2012 and has come under sustained and heavy pressure for a decade from Autistic Advocates to make that ‘progress’. Then suddenly, a year after the #BLM protests of 2020 forced everyone to look at representation, suddenly it’s really important to them..
It’s not progress if you are bandwagonning.
That Harris has included that as an example of progress is indicative of both a lack of research and a big lack of understanding of the Autism narrative, or at least only a strong understanding of the parent narrative.
An assumption of progress where really there is hollow earth.
As I said at the beginning, I think the intentions here were grand. I am grateful for the attempt. But sadly this is nothing more than the writing of a parent, framed around non-Autistic experiences, ideals and bias, perpetuating the status quo with a feeble appeal for change. A call to arms that falls flat through a lack of research, knowledge and an enormous lack of understanding of Autistic culture.
It, like the Autism narrative, lacks the real internal perspective and is sadly lacking for doing so. An opportunity missed.
If as a non-Autistic person you don’t understand, or don’t know the many deep and complicated narratives that surround us as Autistic people, then you have a responsibility to either learn them, or step back; otherwise you are just perpetuating the narratives you claim to be unhappy with.
Its a muddying of the waters.
Its awareness and nothing more.
We need allies like John Harris, but what we need those allies to do is not platform more allies (or people who think they are allies). We need you to platform us, signpost to us, make us your points of information, reference and deference.
Learn from us, not from what other people think about us.
To quote John Harris’ final words:
“What Autistic people need is a quantum leap.”
He could not be more correct, we do need a quantum leap, but unfortunately this article is not it, more of an ungainly stagger forward then back again.
See us not as just children to parents, but as people, rich in thought, rich in experience; rich in potential no matter how we communicate best.
See us as the experts on ourselves, not tag-alongs to other people’s opinions.
ASAN’s tagline, a battle cry amongst Autistic Activists and Advocates, is:
“Nothing about us, without us”
John Harris’ article, despite his best intentions, is everything about us, without us.
Many resources evidencing the harm of ABA are available from the: Therapist Neurodiversity Collective
Article first published at https://theautisticadvocate.com/2021/06/awareness-performativeness-and-irony-in-autism/
Reproduced with full permission of author.