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 above, 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.
Pseudo-philosophical psychiatrists
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
- Autistic person /Autist
- Autistic ways/patterns of being/communication/collaboration/movement
- Autistic community/communities
- Autistic culture
- etc.
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?
Please send in ➜ your ideas for improvement and feedback. Please also see some of the earlier considerations and discussions that have shaped the current version.
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.
- Coming back to life - March 14, 2023
- Nurturing shared understanding in a deceptive world - January 28, 2023
- Collaborative niche construction - January 21, 2023
12 Responses
As a high school teacher who is also on the spectrum, I regret that the focus of special education is teaching autistic children how to survive in a world that is not particularly autistic friendly. While some teachers teach life skills, many focus on teaching coping mechanisms so that these children can survive (and hopefully thrive) in regular education classrooms.
One of the shortcomings of public education is that there is no transition between K-12 education and post-secondary life. Although IDEA (Individuals with Disabilities Education Act) requires public schools to provide special education services until students graduate. once they graduate they’re on their own. Unless a student attends a college or university that has a decent autism support program, graduating seniors will lose all of the support and mentorship that they had once received.
While I appreciate the thought of an openly autistic culture, we are a long ways away from having anything like this.
In thinking about this, I am mindful of an experience that I once had in the UK. While touring Edinburgh, I once engaged the services of an elderly private guide. While having tea with this guide, he proudly told me about his daughter who had graduated from the University of Edinburgh with a degree in engineering. After she graduated she applied for employment with an engineering company that was based in London. An interviewing team came to the university where they had a group interview with all of the university’s applicants.
After asking one particularly difficult question, the first applicant replied with the words, “I dinnae ken.” Every other applicant said the same thing except my guide’s daughter. Instead of saying, “I dinnae ken,” she said, “I’m sorry but I don’t know.”
The engineering company hired her. The reason they gave for hiring her was because she spoke the Queen’s English and did not sound like a “rustic bumpkin” in saying, “I dinnae ken.”
I think we are very much like these engineering applicants. Those of us who are on the spectrum are like “country bumpkins” with “uncouth” accents. To succeed we have to adopt the values of the mainstream culture.
As someone who is ethnic Chinese and the son of an immigrant, I know from my own experience that in the United States our mainstream culture is white and middle class. While it’s always possible to come to this country and to not learn English (just as my paternal grandparents did), the end result is that people who don’t adopt the values of the mainstream culture will be marginalized and their opportunities for post secondary education and employment will be severely limited.
My grandparents lived in poverty throughout most of their lives. In the old country, both came from uneducated Chinese peasant families. In the United States they washed laundry for a living and worked hard to help make a better life for my father and his brother. My Dad and my uncle developed English fluency while attending public schools. With the help of their parents and the GI bill (since both served in the U.S. military), they both went to college and they both went to medical school. After becoming doctors they bootstrapped their parents out of poverty and provided for all of their financial needs until the day they died.
Like it or not, this is the world we live in. The mainstream culture is not autistic. Success is currently determined by our abilities to adhere to mainstream cultural expectations and values.
I agree, mainstream culture is not accepting of autistic ways of being. In that culture “success” (in neuronormative terms) is currently determined by our abilities to adhere to mainstream cultural expectations and values. Not everyone is capable of finding a place within the established system that generates not only a livelihood, but that that also allows the level of necessary masking to stay below the threshold where it generates a chronic mental and physical health impact. When the health toll accumulates, people are forced out of the system.
Similarly not everyone is in a position by a combination of being forced outside the system, privilege / good luck, and a good dose of autistic perseverance, to engineer a livelihood that is to some extent outside the system. What I am saying is that those who can afford to be open about their identity have key roles to play in progressing the neurodiversity movement, and that those who are in this position, as well as the wider autistic community, have much to gain from mutual support and collaboration.
Everything you say is true. I am very fortunate to have been successful in my field and to have had the accommodations and support that are currently being provided by my employer. There are far too many of us who are either on disability or who are unemployed and are living with family. There are also a great many others who are under employed and are working at jobs which are far below their ability levels and/or academic qualifications.
I wish I knew what the solution was.
There is no easy solution. Our entire society is in deep trouble. One thing we can do is to use all opportunities available to us to point out that many/most of the mental and physical health problems faced by Autistic people are the result of the life and diversity denying society we have to live within. Autistic people are the canaries in the coal mine due to our intense bodily experience of sensory overload. Non-autistic people face the same bizarre social pressures.
I don’t see any solution in the near future. Our country is so politically polarized that very few of our political leaders with differing viewpoints appear to be capable of having civil conversations with each other. There was a time not so long ago when members of opposing political parties would meet, talk, and compromise in order to get things done.
Anyone who does this now is derided as being a “traitor” to their respective political parties. Some particularly outrage constituents have even launched recall efforts against these politicians. Others have been sanctioned by their own state parties.
Average citizens are flying into a rage over a diverse range of topics: BLM, policing, gay rights, gender identity, wages, unions, inflation, abortion, the environment, vaccines, masking requirements, redistricting, what’s being taught in our schools, the types of books being stocked in our libraries, water rights, drug abuse, homelessness, etc.
With so many problems, I just don’t see autistic rights let alone basic awareness as being high on any politician’s list. Until we as a society are able to relearn how to interact with each other without dramatic screaming, threats, or violence, I don’t see how we can possibly move forward on anything.
I was thinking about this this morning. During the pandemic, I’ve increasingly separated from society, and in doing so, from autism. I’m the same autistic person, but I’m accommodated and thriving at home where I’m accepted and where I fit. I anticipate in the next year or so, as the virus becomes endemic, I’ll interact again on a larger scope, but not the same as before, and what I’ll try to create is a way to do so within the type of accepted, accommodated, and nourishing frame I have now. I don’t want to be afraid of or avoid challenges, because life is challenge, but I want to protect myself from needless trauma.
By definition, nothing is more pathologising, neuronormatively abusive, and opposite to Design Justice, than group rejection, and cultures of finding it acceotable for personally selective rejection by group-fit ever to exist. The term “Weird Pride Day” is a poison for your movement to touch or have any shred of connection with whatever, simply because it was invented by a rejecter. Vulnerability laws on safe support ethics and suicidality prevention, whatever our views on whether they pathologise, at least do the good that they enforce this ethical duty against every invention with group rejections, that ever arises in our scene.
Can you elaborate on your concerns around personally selective rejection by group-fit in connection with Weird Pride Day? The stated goal (https://oolong.medium.com/weird-pride-day-232465b67dd9) is: “for people to embrace their weirdness and reject the stigma associated with being weird. To publicly express pride in the things that make us weird, and to celebrate the diversity of humankind.”
The etymology of “weird” (c. 1400, “having power to control fate,” https://www.etymonline.com/word/weird) is associated with a sense of agency, arguably less problematic than “autistic” (1912 (Bleuler), from autism (q.v.). … “morbid self-absorption.” https://www.etymonline.com/word/autistic).
In my experience autistic people construct their identity in ways that differ from the ways in which neuronormative people construct their identity, at least in industrialised societies. Terra’s recent article covers this ground https://neuroclastic.com/the-identity-theory-of-autism-values-are-not-opinions-to-autistics-we-are-our-values/. I think the autistic concept of self is well described in the wordless words of the Aut Sutra http://www.hmirra.net/information/pdfs/aut_sutra_draft.pdf by Helen Mirra. See also this article based on my observations on how autistic people develop and maintain relationships https://autcollab.org/2021/07/25/nurturing-good-company-one-trusted-relationship-at-a-time/.
See it on “autistic groups fairness watch'” site under the tag “pride days”.
Thanks to abuse laws on vulnerability and safety of support, none of our scene, not the most cynical parts of it, have even in theory the power of decision to support any pride day whose inventor runs or ran a group that rejects folks by its own personal preference not to have them.
A group that does not carry out a verifiably fair accountable due process to establish that a person has done something seriously rejecty first, before it debars them in return, but that can reject folks at whim and is known to have done it. That rejects folks by selectively not feeling they fit, or because they disagreed with one of the leader’s pet opinions, or they used a word they did not yet know had become considered banned. Any leader who argues that “by rejecting one person you can include many more” is a predatory abuser, and by holding that position they make their group’s existence an abuse crime.
All fine social ideals attached to a pride day are negated actively, broken, turned into a cruel deception, if the pride day was invented by a rejecter and the rejecter carries credit and praise for it. Because then, all action of holding the pride day abuses all the rejecter’s victims, under emotional safety and under inclusion, both including under suicidality prevention.
Many thanks for the wonderfully encouraging and constructive feedback some of you have submitted on the topic of refining the communal definition of Autistic ways of being. 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 (https://autcollab.org/projects/a-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.
I do like the idea of rejecting the noun “autism” altogether, but retaining the adjective and adverb “autistic”. It will enable us to distance ourselves from the “people first” thinking which insists we are “people with autism” … but which, by so doing, completely fails to understand how the fact that we are autistic is absolutely central to our identity and our being, in a way that having a cold is not absolutely central to the identity and being of a “person with a cold”.
However, the problem I perceive is the same old problem I keep stubbing my toe against (metaphorically speaking, that is … not my actual toe) which is that the neurotypicals who describe US as being characterised by “rigidity of thinking” are ACTUALLY the ones whose thought processes are inflexible … so inflexible, in fact, that whereas we have no problem whatsoever with accepting the existence of a word which can exist as an adjective or adverb, but has no associated noun, the neurotypical majority will be incapable of comprehending this idea.
We don’t have to get rid of a corresponding noun altogether. The noun we need is “Autist” (equivalent to “Autistic person”), which refers to tangible people rather than an abstraction that is disconnected/seperable from the person. “Autist” is already part of the proposal and the work in progress update at https://autcollab.org/projects/a-communal-definition-of-autistic-ways-of-being/.