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The medical model in the diagnosis of Autistic people focuses entirely on the identification and “treatment” of symptoms, and fails to acknowledge the obvious underlying causes, i.e. the sources of trauma in industrialised societies, which are core features of the economic ideo-logic of “growth”, and which connect – via the red arrows in the diagram below, the dis-ease of Autistic people with the symptoms experienced:
- The mental and physical health impact of industrialisation in terms of sensory overload and commodification of human relationships.
- The W.E.I.R.D. social norms that present the hyper-competitive industrialised social operating model as a form of “progress”.
- Behaviourism: the pervasive use of coercive techniques for perpetuating W.E.I.R.D. social norms.
- The normalisation of social power gradients, to legitimise the use of coercive techniques and dehumanising treatments.
- The uncritical promotion of abstract group identities and “brands”, to make human behaviour more predictable and humans more exploitable in the name of abstract financial profit.
The cultural bias that is baked into the pathologising framing of the diagnostic process compounds the trauma and perpetuates internalised ableism.
Recently I came across an introductory course for GPs. I took the time to take the course. Now I am educated in how to identify Autistic people with pathologising language and refer them to pathologising diagnosticians for further “assistance”. The framing and the pathologising language is quite problematic, as it reinforces the perception of parents that their child is defective / disordered / deficient, and then makes them receptive to the advertisements from the ABA industry.
We urgently need to educate healthcare professionals and the wider public about the neurodiversity paradigm, the neurodiversity movement, and Autistic culture.
In 2022 the Autistic Collaboration Trust is offering dedicated education courses specifically for clinicians and other healthcare professionals, especially for paediatricians and GPs, but also for physicians in various other specialised disciplines, to ensure that the preliminary screening and referral process is non-traumatising.
We are starting in Aotearoa New Zealand. If you would like to assist in extending the reach of these education courses, please get in touch.
The level of ignorance and hostility that Autistic people regularly have to deal with is nauseating. Here is a quote from a brand new book (2021!) by psychiatrist Iain McGilchrist that gave me a migraine headache a few weeks ago:
“Tony Attwood, an acknowledged expert on the autistic spectrum, writes that there is a ‘quasi-philosophical quality’ to the autobiographies of adults with Asperger’s analysis’. What he is referring to is generally accepted to be an over-rationalistic, hyper-reflexive self-awareness, and a disengagement from emotion and embodied existence, which is very much in accord with my experience of looking after subjects on the autistic spectrum. Moreover, there is an abstract, quasi-philosophical mode of talking that is common in some kinds of schizophrenia, at first impressive, but ultimately recalcitrant to understanding; it is sometimes actually referred to as ‘pseudo-philosophical thought disorder’. Both autistic and schizophrenic individuals have an antipathy to what is embodied, uncertain and unknown (or unknowable), preferring what is abstract, certain and known, all of which is characteristic of the left hemisphere.”
This is an example of the double empathy problem in action. The unfamiliar Autistic mind is judged from the outside, neuronormative insistence on conformance is not viewed as rigid, but Autistic approaches to deal with/avoid sensory overload are interpreted as “an antipathy to what is embodied, uncertain and unknown”, and similarly, questioning established neuronormative cultural abstractions is viewed as “recalcitrant to understanding”. The “subjects on the autistic spectrum” don’t get a voice, and are replaced by “my [neuronormative] experience” from the outside.
How are Autistic people supposed to react when confronted with such nonsense in books from esteemed psychiatrists and in “diagnostic” interviews?
“Pseudophilosophical thought disorder”? I’d love to know, how many *real* philosophers this McGilchrist character has met…
The framing is especially hilarious if you consider the “reasoning” McGilchrist employs in the quoted passage above. There is a lot to be said for transdisciplinary reasoning, but in medicine some feel competent to do so in isolation, without involving those with deep knowledge of relevant domains. In this pathologising language an Autistic philosopher can only ever be a pseudo-philosopher.
I suspect within the archaic and paternalistic medical paradigm a non-pathologising psychiatrist runs the risk of being perceived as a pseudo-psychiatrist. Maybe that’s the core of the problem here.
I would suggest that McGilchrist is projecting his W.E.I.R.D. neuronormative psychiatric “pseudo-philosophical thought disorder” onto neurodivergent people. The neurodiversity paradigm is not mentioned once in 3,000 pages, nor the existence of Autistic culture. Neurodivergent people are presented as aberrations from a “normality” that reflects his own cultural bias.
This urgently needs to change. This is why I have written a book about the essential role of neurodivergent people in human cultural evolution over the last 300,000 years, and about the future of Autistic and neurodiversity friendly forms of collaboration.
Another Autist quoting this book! And Tony Attwood. For my diagnosis with his mob at Mind’s and Hearts in Qld, I received an over 3 year sentence of trauma recovery when Michelle Garnett dismissed the original trauma evoked by the young psychologist who diagnosed me. I hasten to add I wasn’t charged for the induced trauma, just the Autism diagnosis. That was 2018 when I would have thought psychologists would be familiar with and compassionate with clients revealing a history of domestic and family violence. I was wrong.
Entire books could be written about the trauma induced by the so-called diagnostic process and by the pathologising language that forms the backbone of the DSM and the autism industrial complex.
I’m old enough to remember (nearly two decades ago now) when Autistics used to admire Tony Attwood… The honeymoon ended quickly — and very badly. Attwood needs to get it through his head that our divorce is final.
Twenty years ago Tony Attwood took initial steps towards depathologising Autistic people. Since then his work has shifted to a much more commercial focus. He is more focused on selling to parents than on helping Autists, and he regularly makes jokes at the expense of Autistic people. The language quoted above is in line with his style of joking and his way of appealing to parents and their “challenges”. I have never heard him apologise or take on board feedback from the Autistic community.
I’m an #ActuallyAutistic anthropologist who writes about challenging hegemony through writing an anthropology without positivistic conclusions- specifically dealing with embodiment in the world. Can’t believe this was written in 2021 and that we’re still being pathologized.
Openly Autistic culture
Since formal #ActuallyAutistic diagnosis / validation earlier this week, I’ve been having crazy rates of insight… how it’s not being broken but a different way of being. Such an immense relief. Thanks to everyone who sent this absolutely through the roof.
It’s always wonderful if someone did not have a pathologising and/or traumatic diagnostic experience. There is still a long way to go until positive experiences and especially adequately long-term supportive environments post-identification / diagnosis become the norm. The more visible the Autistic community, the easier it is to offer peer support.
The communal definition of autism is a living document that is maintained by the Autistic community. The current version represents a big step forward over the pathologising labels and descriptions that have been handed down to us from psychiatrists and psychologists with a full-blown god complex. But there is always room for further evolving our thinking and the foundations of Autistic culture.
Tania Melnyczuk proposes and asks:
Autism is a neurodevelopmental disability—in other words, it’s about how our nervous system has developed from before we were born. We are different from most people in how we take in and process information, and how we think and move. This also affects how and what we communicate. Autism is an umbrella term: there’s a lot of variety among us. Most of us struggle if the environment isn’t ideal for our sensory and other information-processing differences. We generally have strong pattern-recognition, and some of us are good systems thinkers. Although many autistic people cannot rely on speech to communicate, most nonspeaking autists do not have an intellectual disability.
Now how do we make this short?
She also identified a gap relating to Autistic ways of movement:
The other is the introduction of the movement perspective, considering that this is a defining feature of autism for many nonspeaking autistic people. And there’s also an autistic micromovement signature which, with the right gadgets, could definitively give a YES or NO answer as to whether someone is autistic.
These are all very relevant points. It is worthwhile to reflect on these observations and think about how to best integrate them into the text. Tania and many others including myself also have concerns about the abstract singular term “autism”:
The one [change] is the possible introduction of the plural form, autisms.
I have increasingly been thinking about the very basic terminology. Many of us remember the discussions around the term “Aspergers” a few years ago. It is a positive development that this particular label is on the way out, but we still have “the autism spectrum” and “autism”, and I am not comfortable with either. A growing number of Autistic people are starting to recognise “being on the Spectrum” as being problematic. That’s encouraging. I banned that phrase from my active vocabulary a few years ago.
However, the number of people who have an issue with the term “autism” is (possibly?) still limited, even though most Autistic people do object to the person-first language of “with autism”. We are still left with an “autism” diagnosis, and quite a few also use phases like “my autism”. And there are probably more constellations with “autism” that are not top of mind for me because I don’t use them.
The use of plural (autisms) is a step in the right direction, but I am wondering how far we can make the entire abstract noun disappear by relying on the following words:
- Autistic person / Autist
- Autistic ways/patterns of being/communication/collaboration/movement
- Autistic community/communities
- Autistic culture
Maybe we can also shift from “diagnosis” to the “identification of autistic ways of being”? I will review the current communal definition to see whether this is enough to make Autistic people and Autistic culture more visible and to make “autism” disappear.
The Communal Definition of Autism is communal. It could become the “definition of Autistic ways of being”. What do you think? What are your ideas?
Update: many thanks for the wonderfully encouraging and constructive feedback some of you have submitted. So far all suggestions are compatible with the intent of the outlined terminological changes, including the change in title, and the removal of the abstract noun “autism”. Some suggestions have also added precision by qualifying some statements in the definition. One person suggested we should consistently capitalise Autistic when discussing Autistic culture, in analogy to Deaf culture. I know that some of us are already doing this, and I would recommend that change.
I have integrated the changes into a draft communal definition of Autistic ways of being for the community to review. All changes are highlighted in orange, so you can see at a glance everything that has changed. Please add your feedback to that page, or use the embedded feedback form to communicate further ideas or to discuss draft ideas in private. If you endorse the suggested changes, please also comment or like the page, so that we can gauge the support.
I propose to leave the draft marked-up page in place throughout the month of January, so that we all have time to reflect further and tweak the new text as needed. In February we can then replace the old communal definition with the new one and mark up the old version as “superseded”, with a pointer to the new one.
Co-creation of openly Autistic culture
In co-creating Autistic culture we can put the Design Justice Network principles to good use. It is worthwhile to reflect how deeply entangled behaviourism is with European colonialism. In Aotearoa the European missionaries were surprised by the freedoms to explore and pursue intrinsic motivations enjoyed by Māori children. Most of this has been replaced by colonialism, Western “education” systems, the ideology of the invisible hand, intergenerational trauma, and institutionalised racism. In my work in the healthcare sector I also rely on the language of evolutionary design and related Māori design principles. Before European colonists arrived in Aotearoa, pathologising labels for neurodivergent people were unknown.
Other Autists are embarking on compatible paths:
Autistic authors co-create Autistic culture one publication at a time. A couple of days ago was the launch of my new book ‘The Beauty of Collaboration at Human Scale’.
All books featured by the Autistic Collaboration Trust are written by members members of the Autistic community and are considered to be contributions to Autistic culture. You are invited to read, contribute further books and recommendations, and offer feedback from your unique repository of lived experience.
I will never forget a very concerning incident of systemic marginalisation of Autistic people 15 years ago, within an organisation that was one of my clients. An Autistic person within my team was fired on the spot, without consulting with me or anyone else, without any explanation given, and escorted out of the building by two security guards – simply for being vocal about things that were in bad shape, and for moving and interacting in a uniquely Autistic way.
Neither autism awareness nor autism acceptance are adequate for preventing such incidents and other forms of discrimination and neglect from being considered acceptable. It is time for Autistic people to be appreciated as an essential part of the diversity of the human species. In March next year, as part of Weird Pride Day and Neurodiversity Celebration Week we are going to offer education in the neurodiversity paradigm, the neurodiversity movement, and Autistic culture.
We are going to advocate for openly Autistic culture in schools, universities, and in public libraries, amongst staff and students. In this context privileged Autistic people who can afford to be open about their identity have key roles to play to progress the neurodiversity movement.