31 August 2022, 3:00 pm to 5 pm CST / 8:00 pm to 10: pm UTC, 8:00 am to 10 am NZST
This online panel discussion was hosted in collaboration with the Neurodiversity Activists at MSU, Mankato. It is part of an ongoing series of discussions within the Autistic community to progress towards comprehensive bans of all forms of Autistic conversion therapies (including ABA).
The discussion includes a pre-recorded segment (part 1), as well as a live panel discussion with a second group of panellists (part 2) that ran on Wednesday 31 August 2022.
Bruce Wenzel, United States
Marie Adrienne Robles Manalili, The Philippines
Karen Muriuki, Kenya
Tania Melnyczuk, South Africa
Alex Kronstein, Canada
Jorn Bettin, Aotearoa
Bruce Wenzel, president, Neurodiversity Activists, MSU Mankato, United States
Topic: Make Shift Happen
The purpose of the Neurodiversity Activists at MSU, Mankato is, in the words of queer autistic scholar Nick Walker, “to shift the prevailing culture and discourse away from the pathology paradigm and toward the neurodiversity paradigm.”
Since the pathology paradigm implicitly mandates subjecting neurominorities to ABA interventions, “which,” to quote Walker, “have been used to torture and traumatize two generations of autistic children, and which remain popular with parents and professionals despite the warnings of autistic adult survivors,” the 5th International Day of Protest Against ABA is of special interest to our Outstanding Recognized Student Organization, especially considering the event coincides with the Campus and Community Involvement Fair on August 31st! A related recent interview with Bruce Wenzel from MSU on the topic of banning the teaching of ABA serves as the backdrop.
Because MSU is complicit in teaching ABA interventions, it is imperative that we organize an international panel to #MakeShiftHappen on campus and compel candidates for the Minnesota Legislature to #SayNoToABA.
The panellists may share their experience with ABA, recall how they’ve worked to #BanABA in their geography, provide potential pro-neurodiversity alternatives to ABA, and briefly explain to the President’s Commission on Diversity and Student Government why MSU must remove ABA abuse from its curriculums.
The Autistic / ND whānau concept and Autistic / ND communities are important and essential building blocks of a new emerging reality. The social model of disability applies. We need to actively encourage environmental engineering, and we need to push back against toxic social expectations, and equip future generations of Autistic people with the tools and Autistic peer support that allow them to co-create healthy ecologies of care around them.
Just like we centre the lived experience of Autistic people in the education of healthcare professionals about Autistic ways of being and Autistic culture, centres of Autistic culture need to be designed by and with local Autistic people, taking into account specific local needs, and once implemented, they need to be operated by local Autistic people.
If you are Autistic and live in Aotearoa, and especially if you live in the Auckland region, we invite you to join us in the co-creation process, and to submit your ideas and feedback in relation to the draft scope of a local Autistic centre of culture outlined below. Even if you don’t live in Aotearoa, you can add your name in support of this initiative to underscore the relevance of the proposed concept to Autistic communities worldwide.
Please use the form below to submit ideas and feedback, to register your interest in being part of the core co-design team, and to add your name in support of this initiative and our intention to request funding for this initiative via grants for community-led development from our government.
Picture by Ulku Mazlum
What do you want funding for?
Co-design of a Centre of Autistic Culture in Auckland, by and with Autistic people for Autistic people. Our goals:
To improve the lives and the overall well-being of Autistic people.
To actively contribute to the evolution of openly Autistic culture and to the advancement of the neurodiversity paradigm.
What community need do you purpose to meet?
Local Autistic people in Auckland need to be given the agency to co-design a safe physical space for Autistic collaboration and for local development of Autistic culture and peer support. This will be a centre where Autistic people can be openly Autistic without stigma.
The first step is to elaborate the design for a local centre of Autistic culture, which will be realised, operated and used by Autistic people. Such a centre of Autistic culture can also host cultural events that invite the general public.
Further down the track we envisage this initial Centre of Autistic culture to serve as a reference design for the realisation of similar centres in our cities and towns across Aotearoa.
Initially we require funding for the design, finding a suitable location in Auckland, and for securing funding for the implementation of the design. Ultimately we will also require funding for ongoing operations.
How will you address the need?
By elaborating the requirements, architectural principles, and interior design of a dedicated safe space wholly designed by Autistic people, which allows Autistic people to express themselves without stigma and experience a sense of Autistic community.
What are the expected benefits/outcomes?
Autistic people will achieve greater satisfaction in life through active involvement in every step of creating a cultural space which suits their needs, a reduction in stigma, and higher purpose in life through creation of something that is meaningful and long-standing, and being able to express oneself and collaborate with members of the same minority group without being judged.
Ultimate purpose: Creating a safe space to drop in, rest, read, think, or interact and connect without stigma. A cultural centre which is built around the needs of Autistic people, by Autistic people for Autistic people. Furthermore, serving the general public by hosting cultural events. Thus serving the needs of Autistic people and of the wider community as well. Fostering Autistic agency and pride, better health outcomes via being engaged in the community and learning from each other.
How do you know this is needed?
At present there is no dedicated physical place where Autists can pop in to be with other Autists, away from the pressures to pretend to be neuronormative, and where collaboration can happen in the physical realm. This is very important to reduce stigma, and to improve the mental health of Autistic people.
How will you achieve it?
Forming a design team of about 7 local Autists living in Auckland.
The team will jointly elaborate the design principles in considering the following scope:
Autistic adults (accessibility needs of intersectionally marginalised people are relevant, including easy accessibility from public transport, and also considering the safety of women and queer folks in moving between the space and public transport links)
Companion/child accompanying an Autistic adult
The general public (access is limited to scheduled cultural events)
Draft use cases:
A café and eating space that is safe for Autistic people
Some quiet desk work spaces with the possibility for small group work
Workshop for arts and engineering projects. A secondary use case of the workshop is to serve as a space for scheduled cultural events open to the general public
Draft interior design considerations to reduce sensory overload etc. :
Lighting (multiple options, none of them fluorescent)
As non-clinical as possible, and not like something that was designed by a city council
Additionally submitted ideas and suggestions:
Provide secure small storage spaces, such as lockers, for people to store their independent project materials in – so they do not have to worry about transporting them each time (unless desired) and to aid in their project materials to be protected and stored safely without concern of interference of others and to prevent items getting misplaced.
Consider in your designing and supply ordering that frequent attendees may get attached to certain items – such as one particular chair or a certain cup, and should someone else be using it or attached to it also, it might create conflicts.
Will Braille books be made available in the library for those who may also have visual impairments?
Lots of power points to plug in and recharge devices.
How will temperature control work?
If certain resources are limited, such as computers or project space, consider a large, clear, visual timetable that an individual can sign up to a spot for a certain amount of time. This could also be made available online and frequent users could sign up their slots in advance if it is important to them to have certain times or days.
Recessed and otherwise indirect lighting: Enough dividing surfaces between those using screens and others not using screens (maybe some roll-down blinds and other movable or temporary screening surfaces, and some built in where people can have their own mini light environment which others don’t need to see), to allow everyone to not have a screen in their line of sight if they aren’t actively using it/sharing its use.
Easily accessible information & signage.
Tactile breakout areas – perhaps a sandbox.
I’m a holistic counsellor so sensory spaces and room for movement meditation would be fantastic.
The team will find a suitable location in Auckland, request quotes for implementation based on the design specification, and subsequently look for funding for the implementation phase.
Implementation: building or adapting a space to fit the design
How do you know the community supports your project?
This project has emerged out of many conversations between Autistic people in Auckland and beyond.
The form below is intended for gathering further input and feedback, and to formally document the level of community support, in preparation for conversations with candidate funders.
What community participation/collaboration will be involved?
Nothing about us without us. This project is a collaboration between Autistic people at every step of the project.
How does your request align with the purpose or priorities of community development grants?
This will provide meaningful work for Autistic people, by Autists for Autists, thereby strengthening connections and access to valuable life skills, reducing stigma and strengthening the mana (pride) and mauri (life force) of Autistic people. When the Centre will be operational, it will become a reference site for other locations and for the general community to learn from.
Where will your activities or project provide the most benefit?
Primary location: Auckland Primary ethnic group/community: Autistic adults and their families, and intersectionally marginalised neurodivergent people
Autistic community feedback
I felt so excited reading this proposal. I am trained as a Registered Nurse who has been working in the community for 10+ years. I have two boys – one who is Autistic. My husband is neurodivergent and I suspect Autistic too. I developed a side project from 2020 to help me process the trauma around the lockdowns and sudden changes in life. My biggest vision was to create a wellbeing centre just like the way you have described in the text. (Aotearoa)
I am in Ōtautahi and would love to be involved when the time comes to expand to other centres. (Aotearoa)
I love this idea, and if it goes forward, hope to see it implemented in other cities around Aotearoa!
Please document EVERYTHING so that we can gain motivation, strength and proof of success from your fabulous venture. Hopefully, to replicate it around the region. Thank you for doing this. (Australia)
Must have a section where the history of autistic accomplishment is displayed, catalogued, shared and celebrated. We have always been here and been achieving under the guise of being eccentric. Time to tell the real history of autistic culture and attribute advances in humanity, arts and science to the right cohort. (Australia)
This is great! First of all I support this. Secondly, this is really weird but today I had the last straw and decided I have to organise something here, and we came up with “Autistic cooperative trust”. I’ve made a Meetup group with that name, then I saw this article😅. Do you mind, or should we rethink? Good luck!! (Australia)
Thank you for sharing. I was thinking of doing something similar in the NY area. One thing that motivated my thinking was that there is so much underutilized talent and super-intelligence in this community, yet most of us are marginalized, and many others struggling to get stable work. So I thought that maybe there was a way to build something where we can help autistic individuals find meaningful professions to survive. If you know anyone who might be interested in this concept close to where I live, please be in touch as I cannot do it alone. I would love to collaborate with what you are doing as well. Maybe we can build these centers where they are needed – everywhere! (US)
This is an exciting idea, particularly the Autistic co-creation as so often spaces are designed for Autistic people as part of a larger set of people with disabilities and have not included Autistic people as part of the design or operations team. The possibility of this project is limitless, with application across the globe. It is hard to imagine what such a space might feel like as I’ve only experienced neuronormative spaces. (US)
I love this! I’m curious whether there will be provisions for autistic people to immigrate to Auckland in future. (US)
Full support for this and would like to roll this out in the UK. (UK)
I support the initiative of the Autistic Collaboration Trust to co-design, implement, and operate a Centre of Autistic Culture in Auckland, Aotearoa.
Relevant historic context
The need for Centres of Autistic Culture is real and acute. Safe spaces for Autistic people should be recognised as important ingredients of any healthy community, similar to the role that Mechanics’ institutes used to play in Aotearoa and Australia.
Mechanics’ institutes, also known as mechanics’ institutions, sometimes simply known as institutes, and also called schools of arts (especially in the Australian colonies), were educational establishments originally formed to provide adult education, particularly in technical subjects, to working men in Victorian-era Britain and its colonies. They were often funded by local industrialists on the grounds that they would ultimately benefit from having more knowledgeable and skilled employees. The mechanics’ institutes often included libraries for the adult working class, and were said to provide them with an alternative pastime to gambling and drinking in pubs.
Many of the original institutes included lending libraries, and the buildings of some continue to be used as libraries. Others have evolved into parts of universities, adult education facilities, theatres, cinemas, museums, recreational facilities, or community halls. Few are still referred to as mechanics’ institutes, but some retain the name and focus as centre of intellectual and cultural advancement. A 21st-century movement, originating in Victoria, Australia, has organised a series of conferences known as Mechanics’ Institutes Worldwide Conferences, at which information and ideas for the future of mechanics’ institutes are discussed.
In fact, some Mechanics’ institutes continue to be used by small teams of Autistic people, such as the Dandenong Mechanics’ Institute in Victoria, Australia. Sadly, in many cases the institutes have been absorbed into public libraries, with no considerations of the needs of those who greatly benefited from institutes that encouraged autodidactic and self-paced learning across a broad range of domains, and not limited to academic knowledge.
Nevertheless, public libraries are relatively safe public spaces that are regularly frequented by many Autistic adults. However, many improvements can be made, and dedicated Autistic spaces operated by Autistic people, with a much more comprehensive set of services and supports specifically for Autistic community members need to be (re)established. Public libraries are a good place for catalysing support for the co-creation of permanent local Centres of Autistic Culture.
The timeline below documents the dark history of increasing levels of discrimination against Autistic and otherwise neurodivergent people that can be traced back to the early stages of industrialisation, as well as the rise of the Autistic rights counter movement in the 1990s and the wider neurodiversity movement in the 2000s.
Now is the time for the governments all around the world to act and to look into the harmful effects of all forms of “conversion therapy”, and to start undoing some of the damage by actively supporting and appreciating the cultural value of Autistic and otherwise neurodivergent ways of being.
Join Autistic people from all over the world, committed to the de-stigmatisation of Autistic ways of being and other forms of neurodivergence, in support of the development and delivery of education about Autistic culture, the neurodiversity paradigm, and the neurodiversity movement – for medical professionals, by Autistic and otherwise neurodivergent people. Fill in the form below to sign.
The Autistic Collaboration Trust centres the lived experience of Autistic people in the education of healthcare professionals about Autistic ways of being and Autistic culture. All our educational work in the healthcare sector adheres to the Design Justice Network Principles and is envisioned to catalyse the adaptation of healthcare services to the specific needs of Autistic people and corresponding improvements in health outcomes.
If you are Autistic or otherwise neurodivergent, you can add your name to underscore the urgency for Autistic led education based on lived experience. If you are a healthcare professional, you can add your name to demonstrate your commitment to removing the social stigma frequently encountered by Autistic or otherwise neurodivergent colleagues and patients.
The level of ignorance, stigma, and open hostility that Autistic patients and Autistic healthcare professionals regularly have to deal with is traumatising. There is a need for healthcare sector wide education in the neurodiversity paradigm, the neurodiversity movement, and Autistic culture. Education on these topics is essential for addressing entrenched problems of lack of cultural and psychological safety in the workplace. There are also corresponding problems of lack of safety for patients, their whānau / families and communities.
How does the mindset and language of the new paradigm differ from the language in the old paradigm?
Education about the neurodiversity movement builds on the neurodiversity paradigm. It answers three important questions:
Why is there an urgent need for a paradigm shift?
Who is involved in the shift?
Who must learn from the neurodiversity movement?
Education about Autistic culture builds on the results of the neurodiversity movement. It answers three important questions:
What is Autistic culture?
How does it relate to other cultures?
How does it relate to the neurodiversity movement?
I care deeply about the healthcare outcomes of patients and about the cultural and psychological safety of all patients and all healthcare professionals within clinical environments. I recognise an urgent need for education about the cultural contexts, sensory profiles, diverse needs, and the social stigma frequently encountered by Autistic and otherwise neurodivergent people.
In particular, healthcare professionals must be introduced to the non-pathologising and non-stigmatising language that has become the expected default within Autistic culture and within the broader neurodiversity civil movement that emerged out of the Autistic rights movement. The required education is very different from education framed in the culturally outdated language of the pathology paradigm, which still presents and rates the humanity of neurodivergent people in terms of deficits relative to the current neuronormative culture.
I support the work of the Autistic Collaboration Trust to facilitate education in the neurodiversity paradigm, the neurodiversity movement, and Autistic culture based on lived experience.
Scope of required education
The neurodiversity paradigm
Education about the neurodiversity paradigm and intersectionality is not the same as education about neurodiversity. It answers an important question:
How does the mindset and language of the new paradigm differ from the language in the old paradigm?
The social model of disability
Dimensions of divergence from neuronormativity
Autistic ways of being and the LGBTQIA+ kaleidoscope
Autistic ways of being and ADHD ways of being
The communal definition of Autistic ways of being / Takiwātanga
Exposing the cultural bias of normality
The role of the Diagnostic and Statistical Manual of Mental Disorders
Transdisciplinary understanding of human learning and wellbeing
The connection between neurodiversity and creativity
Ableism and lived experience
Frequently asked questions
The neurodiversity movement
Education about the neurodiversity movement builds on the neurodiversity paradigm. It answers three important questions:
Why is there an urgent need for a paradigm shift?
Who is involved in the shift?
Who must learn from the neurodiversity movement?
Cultural bias against creativity, critical thinking and transdisciplinary collaboration
What is happening in the neurodiversity movement right now
Behaviourism in parenting, education, workplaces, economics, and the sciences
Disability in a sick society
Cultural safety and the human rights perspective
What therapies and medical practices do Autistic adults consider unsafe / safe / useful?
Towards comprehensive bans of conversion therapies
Overcoming cultural inertia in a time of exponential change
Design BY and WITH neurodivergent people
Introduction to Open Space as a transformational tool
Guidance for making good use of Open Space
Critical thinking tools for creative experimentation
Autistic culture and lived experience
Education about Autistic culture builds on the results of the neurodiversity movement. It answers three important questions:
What is Autistic culture?
How does it relate to other cultures?
How does it relate to the neurodiversity movement?
Discovering Autistic way of being
Learning without imitation
Exposing social injustice
Raising healthy children
Creating thriving communities
Towards mutual understanding and a better world
Difference drives humanity forward
Autistic clinicians, nurses, social workers, lawyers, accountants, scientists of all stripes, mathematicians, artists, musicians, engineers, and entrepreneurs
What do paediatricians need to know about Autistic culture?
What do Autistic people want paediatricians to know?
What books could a paediatrician or parent read if they wanted to learn more?
Other useful resources for paediatricians and parents
Education about the many ways in which Autistic people are traumatised throughout their life by the social norms and “normal” living conditions in modern industrialised societies. It answers three important questions:
Why are Autistic people severely affected by traumatising conditions and events?
How to distinguish between Autistic traits and trauma coping mechanisms?
How to best support highly traumatised Autistic people?
Physical symptoms of dis-ease
Mental symptoms of dis-ease
Traumatising diagnostic experiences
Industrialisation and W.E.I.R.D. social norms
Trauma caused by coercive techniques
Trauma caused by social power gradients
Trauma caused by group identities
Avoiding and healing from hypernormalisation
Avoiding and healing from reductionism
Avoiding and healing from behaviourism
Avoiding and healing from bullying
Avoiding and healing from othering
Last update: 19 July 2022
Dr. A. Ann Emery, Allied health professional, Psychologist, Canada
Dr. Alan Beach, PhD, LCSW, LMFT, Allied health professional, Clinical Social Work & Family Counseling/Psychotherapy, United States
Aly Dearborn, LMFT, Allied health professional, Psychotherapist, United States, Autistic
Amanda Curran, Allied health professional, Australia
Amanda Hart, Nursing professional, S a c t nursing sister, United Kingdom, Autistic and otherwise neurodivergent
Amber Lane, Allied health professional, United Kingdom, Autistic and otherwise neurodivergent
Ana Karemy López Cortes, Licenciatura, Healthcare administrator, psicologa, México, Autistic and otherwise neurodivergent
Andrea Afonso, Physician, Portugal
Andrea Beres, Allied health professional, Psychologist, Australia
Annette Collins, Allied health professional, Australia
Ariel Lenning, Physician, Optometric physician, Optometry, United States, Autistic
Dr. Ashley Dubin, PhD, Allied health professional, Psychology, United States, Otherwise neurodivergent
Brannen Clark, Allied health professional, United States, Autistic
Becki Woolf, Allied health professional, United States
Brian Hess, Allied health professional, United States
Brian Moran, Nursing professional, United States
Carol Beatty, Allied health professional, Counsellor, Couples’ Therapist, United Kingdom
Casey Wilson, Allied health professional, United States
Cecilia Barbosa, Allied health professional, United States
Chanlynn Liao, Allied health professional, Speech-language Therapist, United States
Chelsea Mongan, Nursing professional, Nurse Practitioner, United States, Autistic and otherwise neurodivergent
Doraine Raichart, Allied health professional, United States, acupuncturist and Eastern medicine practitioner
Elizabeth Williams, Allied health professional, United States, Autistic and otherwise neurodivergent
Emma Ward, Allied health professional, United Kingdom
Fernando Rodríguez, Allied health professional, España
Heather King, Allied health professional, Speech-Language Pathologist, Australia, Autistic
Holly Sprake-Hill, Allied health professional, United Kingdom, Otherwise neurodivergent
Ian Reid, Nursing professional, United Kingdom
Ioannis Voskopoulos, Allied health professional, Greece, Otherwise neurodivergent
Iuliana Sava, Allied health professional, Psychologist, United Kingdom, Autistic
Jess Hodges, Allied health professional, Psychotherapist, Australia, Autistic and otherwise neurodivergent
Jessica Kitchens, Allied health professional, Mental Health, AA Therapist and Advocate, United States, Autistic and otherwise neurodivergent
Jessica Newland, Allied health professional, United States, Autistic and otherwise neurodivergent
Jonathan VanLandingham, Nursing professional, Registered Nurse, United States, Autistic and otherwise neurodivergent
John Finnegan, Allied health professional, United States
Julie McCarthy, Allied health professional, Australia, Otherwise neurodivergent
Kali Rees, Allied health professional, United Kingdom
Karen Scorer, Allied health professional, United Kingdom
Katrina Fiebig, Allied health professional, Patient/Family Advocate, Psychiatry, Nursing professional, United States
Kristen Ipson, Allied health professional, Speech-Language Pathologist, United States, Otherwise neurodivergent
Lauren Lopez, Nursing professional, LPN, RN, Public Health, United States, Autistic and otherwise neurodivergent
Luke Shobbrook, Allied health professional, Counselling Psychologist, Psychology, Jersey
Maija Mills, Allied health professional, Physiotherapy, Canada, Autistic
Marie Manalili, Allied health professional, Speech/Language Pathologist, Philippines, Autistic and otherwise neurodivergent
Marta Louise, Allied health professional, Canada, Autistic and otherwise neurodivergent
Dr. Megan Anna Neff, Allied health professional, Psychology Resident, United States, Autistic and otherwise neurodivergent
Meredith Thompson, Allied health professional, Licensed Independent Clinical Social Worker, Social work, United States, Otherwise neurodivergent
Miah Pavlik, Nursing professional, United States, Autistic
Miranda, Nursing professional, Canada, Autistic and otherwise neurodivergent
Nicola M, Allied health professional, United Kingdom, Otherwise neurodivergent
Nicole Lui, Allied health professional, Certified Functional Nutritionist (FNLP, CFNC), Medical Cannabis Consultant (AAFP-EC), Clinical Herbalist (TCM & Western Herbology, working towards board certified), and Spiritual Teacher, Canada & Hong Kong, Autistic and otherwise neurodivergent
Dr. Patricia Burkhart, Physician, Radiologist, United States, Autistic
Paula Gómez, Allied health professional, Australia, Otherwise neurodivergent
Raphael de Miranda Luz Trindade, Physician, Portugal, Autistic
Sandy Rayman, Allied health professional, Therapist, United States
Sara Schultz, OD, Physician, optometrist, United States
Stephanie Warm, Allied health professional, psychotherapist (LCSW), United States
Svanhildur Svanvarsdottir Kristjansson, Allied health professional, Autism consultant, Speech Language Pathologist – TEACCH advanced certified consultant, United States, Otherwise neurodivergent
Tara O’Donnell-Killen, Allied health professional, Ireland, Autistic
Dr. Terry Hannan, A/Professor, Physician, General Internal Medicine and eHealth, Australia
Tonya Makar, Allied health professional, United States, Otherwise neurodivergent
Tracey Nelson, Allied health professional, Australia
Vanessa MacKay/ OT, Allied health professional, United States, Otherwise neurodivergent
Dr. Zoe Raos, Gastroenterology, Physician, Aotearoa New Zealand
Alden Blevins, United States, Autistic and otherwise neurodivergent
Alix Latta, United States, Autistic
Ama Love, United Kingdom, Autistic and otherwise neurodivergent
Amanda Sutton, United Kingdom
Bailey Wagner, Canada, Autistic and otherwise neurodivergent
Brina Simon, United States, Autistic and otherwise neurodivergent
Candace Jordan, United States, Otherwise neurodivergent
Caroline Kimrey, United States, Autistic and otherwise neurodivergent
Catherine Andrews, United States, Autistic and otherwise neurodivergent
Dan McFarland, United States, Autistic and otherwise neurodivergent
Daniel Aird, Senior Research Associate (Biotech / cancer field; but am very well versed in science), United States, Autistic and otherwise neurodivergent
Heather Johnson, Writer, United States, Autistic and otherwise neurodivergent
Heather Steeves, United States, Autistic and otherwise neurodivergent
Herman Langkamp, Nederland, Autistic
Jacki Edry, Author, educator, advocating for neurodiversity and inclusion, parent of neurodivergent children, Israel, Otherwise neurodivergent
Jax Bayne, United States, Autistic
JC John Sese Cuneta, Philippines, Autistic
Jessica Nabb, Australia, Autistic
Kae Peterman, United States, Autistic and otherwise neurodivergent
Karen Sydow, Australia, Otherwise neurodivergent
Khaenin Rutherford, United States, Otherwise neurodivergent
Linda Guevara, Mexico, Otherwise neurodivergent
Lisa W, United States, Autistic and otherwise neurodivergent
Lucy Reid, United Kingdom, Autistic and otherwise neurodivergent
Liz Pine, United States, Autistic
Martin Bryan-Tell, United States, Autistic and otherwise neurodivergent
Matthew R, United States, Autistic and otherwise neurodivergent
Meg Bradshaw, Canada, Autistic and otherwise neurodivergent
A global multi billion dollar autism industry has been built on the backs of Autistic people and is critically dependent on the ongoing traumatisation of Autistic people. This is glaringly obvious in terms of the perpetuation of traumatising behaviourism that is sold as a “treatment for autism” to the parents of Autistic children, but it is not always quite as obvious in relation to the “treatment” of Autistic adults.
In this discriminatory cultural environment, many services from the autism industry must be considered unethical, and obtaining a diagnosis can be an invitation for potential abuse and exploitation, as illustrated in the account of adult diagnostic experience in Australia below. Even the most well meaning diagnostician will produce “offical” documentation that is coded in pathologising language.
🧵Attempting to understand Autistic people & culture is difficult for many, because of the chasm between a) the pseudo-scientific and culturally biased behaviourist framing of autism in the DSM and b) accounts of Autistic ways of being articulated in the neurodiversity paradigm. https://t.co/z42YpWSV4q
Trigger warning: if you are currently keen on obtaining an official diagnosis of autism, the account of abuse and diagnostic trauma below may prompt you to rethink, and draw your attention to the Communal Definition of Autistic Ways of Being.
Regardless of diagnostic status, the account below should prompt all Autistic people
Surviving professional abuse accompanying autism diagnosis
Letter to the psychologist who in diagnosing my Autism simultaneously assumed the entitled right to abuse me:
Survivors are quiet because they are haunted, because they still cannot entirely accept what happened. Khan, Ausma Zehanat (2017) The Unquiet Dead, UK, Oldcastle Books Ltd
“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.” McGilchrist, Iain (Nov 2021) The Things that Matter: our brains, our delusions and the unmaking of the world, London UK, Perspectiva
I first read the above McGilchrist quote in December 2021, with awe. I recall thinking, what confident audacity for the author and Tony Attwood to expose their un/conscious bias, their subjective gaze, their neuronormativity so publicly in the year 2021 for all the world to witness. And then I realised in breathtaking shock, they suffered no risk. I was naïve. Theirs is the populist imagination of the fearful conspiracy theorists. It is we Autists who continue to be the ones at risk as they perpetuate their dehumanization of the neuro-other. (These comments will apply equally to schizophrenics I suspect, but I would need to ask a Schizophrenic human to truly know that.)
I still find it unbelievable that old white men still exercise such power and authority in the 21st century. They are both around my age as it happens. Yet I shouldn’t be surprised; pragmatically I realise their narrative has a long tradition of attracting unquestioning followers waiting in line for a share of their empires; power and prestige are very seductive. And then there is the opportunity to accrue wealth; it turns out the Autism Industry is a great money spinner. Too many reasons to dehumanise; none of any value to not.
However, in 2018 I did not know this form of confidently overt Ableism still thrived; I was undoubtedly ignorant. I did not know careers were still being built and fortunes being made on the backs of Autistic humans. I wasn’t looking for Ableism, but neither was I looking for Sexism, Misogyny, Homophobia and/or Ageism. (In hindsight I can comfortably assume Racism and Transphobia would have also presented if I had been a POC and/or Transgender.) I was so naively confident I was safe that I walked into your offices alone; I believed I was merely undertaking a series of objective tests. It never occurred to me in my wildest dreams that I would not be safe from/with you.
I had not long turned 67 when I first walked in your door. At that time, I had little insight into what it meant living an undiagnosed Autistic life as a woman; but you did. Autism continues to be your advertised area of expertise.
What I do continue to know is that statistically few women can reach my age without experiencing some forms of abuse, particularly Violence Against Women (VAW). What I do continue to know is that Women with Disabilities face a far greater risk, experience VAW at a far higher rate. Given the political and media attention to VAW and abuse of people with disabilities this century, it was/is surely not possible for you to be ignorant of its ubiquitous nature unless you deliberately chose to wear blinkers.
Given what I assume you knew (and know) about the incidence of domestic/family/sexual abuse among Autistic Women and Girls, diagnosed and undiagnosed, it can hardly have been an earth-shattering surprise that I revealed in response to your questions in that first session, a history of domestic/family abuse.
Given what I assume you knew (and know) about the incidence of domestic/family/sexual abuse among Autistic Women and Girls, diagnosed and undiagnosed, then you surely must have been trained in how to respond appropriately to such revelations. Training: Trauma Counselling; Managing exposures of Domestic/Family Abuse in the counselling room; Privacy and Confidentiality; Client Safety.
Because in 2018 I was blind to your Ableism, I experienced your abuse primarily as Sexism, Misogyny, Ageism and Homophobia. Now all those may be true also. Most likely were/are. But what I hadn’t considered from your worldview was/is that they may all be subcategories of your Ableism. Or that they were/are inextricably enmeshed with your Ableism.
I am astonished that in 2022, our society and economy continue to be controlled by a culture of patronising paternalism in a hierarchy determined by intersections of race, class, gender, wealth, the list goes on. This is utopian naivete on my part because equality is popularly delivered as the democratic narrative when in reality the survival of extant democracy requires equality to be non-existent, only illusional. I wonder if that is why paternalism seems mistaken for emotional maturity by a passive majority, because we are encouraged to see the world through rose-coloured lens; it may explain the current popularity of daddy politicians around the planet. Whereas it is the reverse. Emotional maturity rather requires self-awareness, compassion and empathy. Paradoxically, while we live in a culture which encourages dependency on a self-appointed minority perceived as “experts”, our “experts” will never gain emotional maturity.
I am labouring the point of emotional maturity as in 2018, I was struck by its absence in your language and presence. Even today when I recall your voice, I hear that of an earnest little boy. You were so young, younger than my own sons. But even then, I wasn’t alarmed as I trusted your professional training should have compensated for your youth; it could even have been an advantage. It is a somewhat humorous fact of life that as you age you become more aware of the youth of working people around you and you need to learn to accustom yourself to that reality. Thus, I entered your office with increasing hope that a young man could be more aware and not mansplain a woman as an older man might.
Consequently, I was caught totally unawares when your primary narrative to address me after the first session was Shaming and Blaming Coercive Control. I would have corrected my children for speaking to another, including me, in that manner. I would have called it out for what it was: Disrespectful and Abusive. It is the language only one of my children ever tried as an adult, and that was when he wanted to manipulate and bully from me something to which he wasn’t entitled. I just had too many frameworks from which to try and comprehend your behaviour: emotional immaturity, sexism, misogyny, ageism, homophobia, classism, poverty, single mother stereotypes, or some combination of some, or a combination of all.
I am now 71. One of the experiences of ageing is the illusion that time is passing at an escalating speed. In some ways, that is an existential truth as the presence of death hovers ever closer in mathematical probability. Thus, as I age, there is an increasing sense of urgency to gain increased insight into the dynamics of your abuse in 2018. And I have been wondering how that might be possible.
I wonder what happens when my experience of your abuse metamorphoses into another where as many as possible of the toxic stereotypes you embraced, except maybe your Ableism, are written out. Is it possible to create a hypothetical scenario to explore if it takes the client to the same place you took me: Denied Humanity? The most commonly accepted example that most closely resembles the experience of the domestic/ family violence victim-survivor is that of the War Veteran with PTSD.
So here goes. I address this to you, my professional abuser, where the word “professional” is a pun, carries the double entendre of your self-perception as a professional as well as being an expert abuser. It is in this extraordinary, detached retelling that I am realising how severely you abused me.
Imagine a “white” middle-aged heterosexual man, professionally attired, open-necked shirt, chinos and loafers, straight backed, slender, physically fit deportment, well spoken, well educated, gentle quiet demeanour, firm in his convictions and confidence, self refers to your office for Autism assessment.
He attends alone a little nervous understandably but feeling confident safe and trusting believing there is no reason for concern seeking answers with open curiosity, after meeting serendipitously and a brief ensuing conversation with an Autistic man.
In the first of the four sessions, the introductory session, you learn: His parents are deceased, he has no siblings (only child). He and his ex-wife separated and divorced many years ago. They had no children. He has been living alone since his marriage ended.
He also reveals to you he is a retired high-ranking army officer (let’s say major or captain) and completed his university education as a civil engineer while in the Australian Defence Services.
In response to your questions about his army career you learn he was deployed to two terms of service in a war zone as an active soldier and officer
You ask: Where? What country? What war?
He replies: It doesn’t matter what country or what war. Witnessing the atrocity of war is witnessing the atrocity of war.
You ask: What was your experience of war?
He replies: I saw enough to return with PTSD. War Veterans are highly probable to return with PTSD. I am no different. You see things you can never unsee. Things that inhabit your worst nightmares.
You ask: When did this happen? What years?
He replies: When? 1990s? 2010s? Why does that matter. It is irrelevant.
You ask: Have you recovered from your PTSD?
He looks at you bewildered; his look says “You ARE a qualified psychologist, aren’t you? Did you really ask that idiotic question?”
Did you catch that look?
He smiles gently and explains: There is no such thing as full recovery from PTSD. The scars are permanent. Healing is modifying your life as you painfully learn to care for your emotional scars. You recreate your life.
You don’t acknowledge that answer.
Reluctantly into your unresponsiveness, evoking his own embarrassment and shame, he adds: I was also a POW for some time, imprisoned in isolation in deprived conditions.
You don’t acknowledge that additional information or his overtly and fearfully presented feelings.
Into the silence and your downturned head, he offers: I have become a practitioner of Zen Buddhist meditation which brings a lot of peace to my life. And Defence have provided me with a trained Companion Dog. A Golden Retriever.
You don’t acknowledge that feedback.
He smiles watching you ignore him: Her name is Irene. The Greek Goddess of Peace. She brings serenity and joy, laughter and playfulness to my life.
You don’t acknowledge that information.
Rather you say as if he hasn’t spoken: Diagnosis requires family members complete questionnaires regarding their observations of your behaviour.
He nods slowly trying to absorb, comprehend why what he thought was objective scientific tests suddenly became subjective observation. He knows how trauma fractures families. As do all War Veterans. And there is only one potential family member to contact. He waits.
You implacably demand with quiet authority: I need a family questionnaire completed by your wife.
He replies: I have already told you I am separated from my wife and as is for many returning War Vets with PTSD, our marriage ended badly. I do not want to do that. That will not be fair on her, or on me, particularly when we have had no contact for many years now. It will also be understandably impossible to obtain lack of bias from her.
You demand quietly, rigidly, without emotion: I need a family questionnaire completed by your wife.
He replies: As you believe this is necessary, I will try to find her, explain to her you need this, hope she will understand, but I ask you to acknowledge our shared history, to protect and be respectful of both of us during this process.
You do not acknowledge this response but move on.
You demand unemotionally: You need to contact your POW jailers to complete questionnaires. Can you organise that?
Now he looks very confused, asking: Why do I need to do that?
You reply quietly aloofly: Their responses are necessary for the diagnostic assessment.
He looks at you in shock, but he thinks to himself: this is your area of expertise, you must know what you are doing. Discovering if he is Autistic is very important to him as he continues trying to make sense of his life.
But still he replies: I put myself at enormous risk if I do this and the Army may well object.
You demand quietly implacably: I need their completed questionnaires.
The War Veteran replies with great fear: I will see what I can do. But I am trusting you to keep me safe. I am trusting you not to breach my privacy and confidentiality. If the Army agrees, I will arrange for them to forward their responses directly to you so I do not need to have direct contact with them; I will organise contact via a third party, via Army personnel.
Did you catch his fear? Do you see how crazy this story is becoming?
You choose not to respond to or acknowledge his feedback.
You choose not to acknowledge his fear.
You choose not to engage with him in adult/adult language, but rather infantilize him.
You choose to disrespect him and his ex-wife while simultaneously privileging her narrative.
At a later session, you will tell him: You have Alexithymia and will not explain what that means. You will later tell him: You have no connection to your feelings, or You have no feelings, despite his exposure of his feelings in your office, his years of personal counselling, tertiary education, officer training and career.
You will tell him: You do not have empathy
And when he queries, you will tell him: You do not have real empathy.
You will tell him: You do not know who you are.
But you do not tell him whom he is.
You will order him to attend his GP ASAP, to go back on antidepressants and antianxiety medication urgently. You don’t acknowledge him informing you in a previous session that his GP has said he doesn’t need them, that he hasn’t taken them for years. His GP will be furious. With your irresponsibility.
You will order him to defer all decisions regarding his life to a young man, a defence services cadet, about 30 years younger, he has been mentoring. A young neighbour, one of the few current friends/acquaintances he has told you about in his responses to your questions about his social life.
You will choose to implacably ignore but rather, coldly observe him, the session he devolves in a trauma response of your own creation because you denied his fear and risk. You will also ignore the risk to him inherent in his presenting trauma response. You will further choose not to do any follow-up care after his trauma response to your abuse.
You will write him an unsolicited Executive Function Report in infantilizing language telling him he needs a carer as he is incapable of self-care and making his own decisions. You will do this even though he has told you that he has been living capably and independently alone since his marriage ended many years earlier. And he is a mature age adult who has a successful career behind him.
Three years later, your colleague will advise him that you wrote that document using the word-processing search-and-replace function to insert his name in place of that of a young child. In a proforma document intended for young children.
It is a letter so infantilizing and minimizing that he would never even address a child in that manner.
Three years later, your colleague will advise him that the document was “unhelpful” but that you didn’t mean to be “unhelpful”.
You will email him that unsolicited infantilizing document on a Saturday morning three weeks and five days after the fourth and final session.
In your email to him, you will not acknowledge that you are also in receipt of the email his POW jailers sent him about two hours before you sent your email. The email that his abusers also confidently sent you. He knows you have received it because your correct email address is in the cc field.
You will not feel it necessary to check in with him to ensure that he is ok after receiving both emails so close together on a Saturday morning.
You will repeatedly deny over a period of three years, despite the evidence to the contrary, ever having contact with his POW jailers.
You will tell him in writing He has lied to you about his cohabitation status. That He doesn’t live alone as he claims but is cohabiting with another person. (document forwarded late 2021, over three years post diagnosis.)
Your false accusations about his cohabitation status are so crazy that he can only wonder why make such a false accusation. Was there something you meant to say that you didn’t say?
You will tell him in writing he is “offensive” (stet) (same document forwarded late 2021)
You will shame him and trigger his internal shame. Shame is easily triggered in PTSD victim-survivors.
What you choose not to tell him:
You will not consider it necessary to keep him safe.
You will expose him to his abusers.
You will gift them a further opportunity to abuse him. They can hardly believe their good luck. And they will exploit their good fortune.
You will be manipulated by his abusers because you want to be manipulated by his abusers.
You will preference his jailers’ narrative over his narrative.
You will treat his narrative of his abuse experiences as over-emotive reactions having no validity or credibility because all PTSD victim-survivors and Autists have over-active imaginations. Or naturally deceive.
The narrative of his torturers and jailers will be his irrevocable truth and reality.
You will consider it reasonable to breach the Professional Standards of your industry; you will consider it reasonable to breach his Privacy and Confidentiality because, as he is not fully human, he is not entitled to their protection.
You will not tell him that the wealth-creating Autism Industry has still not surrendered its Eugenic roots, rather celebrates them.
You will not tell him that the Autism Industry is ableist, founded on the Medical Model of Disability. (In preference to the Social Model)
You will not tell him that the Autism Industry facilitates the systemic abuse of Autistic children through such practices as ABA because the Autism Industry believes Autists have no feelings.
What he will do:
For over three years, he will try to gain insight and healing using the tools of negotiation and mediation while simultaneously requesting staff training, contacting you, then your colleagues. He will not be successful in that endeavour.
He will discover that he cannot gain support for professional abuse from another psychologist or mental health worker as they close ranks with the mantra “you didn’t mean it”. That mantra is ubiquitous; it is nigh on impossible for anyone to gain professional support for professional abuse.
Because there is no external support available:
he will traumatise and retraumatise himself to process his trauma alone as his only available healing path and
he will read multiple texts on Trauma Recovery to enable that path and
he will read literature and texts about Autism written by Autistic people to educate himself about Autism and
he will discover that ableism is rife within the Autism Industry
Through his reading, he will discover that it was totally unnecessary for you to abuse and traumatise him; that professionals assess and diagnose Autism every day taking into account trauma histories of their clients; that they do not contact their abusers.
He will request support from the relevant State Health Ombudsman who will reply stating that
He is exactly 12 months too late to lodge a complaint; the cut-off date is 2 years
His complaint is not deemed sufficiently serious to consider investigating beyond the 2-year cut-off date and
They do not consider your other clients are at risk of similarly repeating abuse which would call for risk assessment and training
Over a period of 3 ½ years, he will attempt multiple times to gain access to all the documents in his file.
He will not be successful.
Different documents will appear at different times but only if he can name them.
One of the documents will make false allegations to which he has no recourse.
Over a period of six months in 2021, he will exchange frequent emails with two of your immediate colleagues. They will variously tell him:
They are not responsible for any aspect of your professional practice even though one of them was the owner of the practice at the time of the abuse
You were “unhelpful” but didn’t mean to be “unhelpful” (stet)
One will refer him back to you for resolution although
he has informed both colleagues he has tried this path many times before unsuccessfully and
your colleagues know it is not best practice or safe to refer a client back to a professional who has abused them
They will employ various overt tactics to silence him.
You will deny his truth and reality.
You will choose to abuse and traumatise him for an unstated reason.
Because you and your colleagues do not believe he is truly human and you and your colleagues believe it is also necessary for him to know he is only pseudo-human.
He is Autistic, recalcitrant to understanding, suffering from pseudo-philosophical thought disorder.
My question is: Will you abuse a War Veteran and POW victim-survivor the same way you abused a Family Violence victim-survivor? I cannot answer that question for you. I do not know your answer; only you do. But the indications are that you will as you and your colleagues believe Autistic people have no real humanity.
You know you are safe, that he has no path to redress.
You have got away with it. Successfully and easily, with minimum fuss.
What say you?
i try to gain self-deprecating comic relief from your abuse i tell others how glad I still am to receive the autism diagnosis that was worth every hard found dollar i paid for it
but I continue to be left speechless by your unsolicited entirely unexpected abuse that accompanied your assessment
i know you didn’t charge me for it you gifted me your abuse and trauma free but … i could have done without it
four years later i am still bewildered by its inanity meaninglessness senselessness
four years later i still puzzle what you got out of your abusive behaviour authority power control ego some need to punish but punish what
you stampeded over my life with all the privilege of a wealthy white boy let loose in a vast lolly shop
you behaved like a spoilt indulged irresponsible child but you were not a child you were an adult
you executed authority with unquestioning arrogance indifference utterly denying the existence of family violence
you denied and exploited my history of intergenerational family violence to feed some want of yours maybe ego mercilessly
you shamed me shamelessly with no regard for my wellbeing
you disregarded my safety with the ease and disregard that a quake trembles and abysses the earth’s crust
you unstitched in a brief moment in time half a century of my hard work recovering from domestic abuse violently ripping the seams apart
you broke my trust breached my privacy and confidentiality with the same indifferent insignificance as snapping a slender twig underfoot
you breached with equanimity professional ethics, member code of ethics, antidiscrimination legislation and UN human rights while iterating to me many times you were an ethical man
you blindfolded me set my back against a bloodstained brick wall in front of a firing squad which you implacably orchestrated and conducted
you were an unexpected subversive volcanic eruption a projectile of projected toxic stereotypes
you told me I had no empathy or no real empathy i am still waiting to meet your empathy or your compassion
you executed with onerous much-practiced precision coercive control and minimization
you cast away my humanity you erased my identity my existence with self-righteous authority
you broke and shattered my body scattering it atom by atom to every corner of the universe
you accelerated my soul my essence the length of the Large Hadron Collider and unceremoniously dumped every particle into the endless depths of a black hole
you assigned me relentlessly to a hell of your own creation
you cast a swathe of chaos through my life from which four years later i am still trying to recover
i still struggle to negate my internalized anger and judgmentalism for my stupidity trusting you
i remind myself I was the client i remind myself you were the psychologist it was your responsibility to protect me
but don’t you worry your prestigious colleagues believe you did the right thing denying my humanity I checked
but four years ago i didn’t understand why you would put choose to put my safety at risk when I warned you of my peril
but four years ago i didn’t know that you believe I am so valueless you also believed it was totally reasonable to put my personal safety at risk
but four years ago i didn’t know you chose to abuse and traumatise me as you and your colleagues believe i am not capable of feelings
but four years ago i didn’t know that you and your colleagues believe autistic humans are not entitled to the protection of the professional standards of your industry
but four years ago i didn’t know that you and your colleagues believe autistic humans are not entitled to the protection of government antidiscrimination legislation
but four years ago I didn’t know that you and your colleagues believe autistic humans are not entitled to the rights of conventions set down by the united nations
but four years ago I didn’t know you and your colleagues believe autistic humans have no humanity no heart
but four years ago i didn’t know you and your colleagues believe autistic humans are pseudo humans and quasi philosophers
But four years ago i didn’t understand that you and your colleagues believe autistic humans are “recalcitrant to understanding” with ‘pseudo-philosophical thought disorder’
but four years ago i believed the autism industry had moved beyond its history of eugenics. i was wrong
your ableism your sexism misogyny ageism and homophobia have successfully unravelled me like a carelessly knitted cardigan. if that was your intent
congratulations, human, congratulations you and your colleagues, succeeded where my every family member before you failed they will all be proud of you
Ford, Ian (2010), A Field Guide to Earthlings: an Autistic/Asperger view of neurotypical behaviour, Albuquerque, Ian Ford Software Corporation
Gadsby, Hannah (2022), Ten Steps to Nanette: a situation memoir, New York, Ballantine Books Hill, Jess (2019), See What You Made Me Do: power control and domestic violence, Australia, Black Inc (winner of the 2020 Stella prize)
Jane, Emma A (2022), Diagnosis Normal: living with abuse, undiagnosed autism, and covid-grade crazy, Ebury Press (Penguin Random House Group)
Milton, Damian (2017), A Mismatch of Salience: explorations of the nature of autism from theory to practice, UK, Pavilion Publishing
Milton, Damian (lead editor) (2020), The Neurodiversity Reader: exploring concepts, lived experience and implications for practice, UK, Pavilion Publishing
Silberman, Steve (2015), Neurotribes: the legacy of Autism and how to think smarter about people who think differently, Allen and Unwin
Sosa, Lorena (2017), Intersectionality in the Human Rights Legal Framework on Violence Against Women: at the centre or the margins? UK, Cambridge University Press
The Yogyakarta Principles on the Application of International Human Rights Law in Relation to Sexual Orientation, Gender Identity, Gender Expression and Sex Characteristics to Complement https://yogyakartaprinciples.org/
Violence Against Autistic Women and Girls and People with Disabilities
The final government report into institutional child abuse was released in December 2017, the culmination of five years’ work with the ongoing investigations being reported in the media on nearly a daily basis. That was seven months before I stepped into your professional offices. (https://www.childabuseroyalcommission.gov.au/final-report)
If we care to look with open eyes, there is no shortage of evidence that points to the social toxicity of “industrialised civilisation”:
Departure from a hunter-gatherer living is an opportune window for insight into the effects of modernization. The Ik of Uganda purportedly become more depressed upon shifting from hunter-gather to agricultural practices.After indigenous circumpolar peoples rapidly modernized, there was a rampant incidence of diabetes and suicide rates tripled within a decade.
Other lines of evidence suggest modernization is associated with depression. Indexing modernization by measures of belief in magic, hunting, gathering, agriculture, and technological complexity, a cross-cultural analysis of community women in rural Nigeria, urban Nigeria, rural Canada, and urban U.S. found the degree of modernization to correlate with a higher prevalence of depression in a dose-dependent manner.
Adoption of the American lifestyle appears to explain higher rates of depression in Mexican Americans born in the U.S. compared to Mexican immigrants.
As metropolitan China has undergone rapid cultural transformation over recent decades, the risk of suffering from depression appears to have risen dramatically: in a retrospective study, Chinese born after 1966 were calculated to be 22.4 times more likely to suffer from a depressive episode during their lifetime compared to those born earlier than 1937.
In developed countries, urban dwellers have a higher prevalence of psychiatric disorders, and specifically mood and anxiety disorders, compared to rural counterparts.
In an investigation of affective disorder prevalence among the Amish, a community that maintains a traditional agrarian culture with notable unity and social connectedness, the prevalence of MDD was found to equal that of bipolar disorder- about 1%.
The above evidence suggests higher depression prevalence and risk is associated with general aspects of modernization.
There seems to exist a human tendency to view current events and social trends as evidence of society’s downfall, but could it actually be happening now? Accumulating evidence indicates that the social environment in modern-industrialized countries, especially in the United States, has become increasingly competitive, threatening, and socially isolating.
Contemporary populations may now be more susceptible to depression because of greater inequality, low social support, intense individual competitiveness, and increased social failure. Onset of a major depressive episode often coincides with stressful life events.
The modern social milieu could contribute to rising rates of depression via higher frequency and/or severity of adversity. Many have posited that capitalist values have directly contributed to a decline in social well-being and an increase in psychopathology throughout the western world.
A rise in psychopathology among young adults has been attributed to a shifting cultural emphasis away from intrinsic goals, e.g. social relationships, community, and competence, to extrinsic goals, like money, status, and appearance.
Similarly, an increase in anxiety among children and college students was preceded by or coincided with measures of lower social connectedness and higher social threat.”
In 1985, the General Social Survey found that the mean and mode for number of confidants, people with whom one can comfortably discuss important issues, were both 3 and 3. In 2004, a repeat of the survey revealed that the mean and mode had respectively dropped to 2 and 0.
This trend toward isolation is alarming as loneliness appears to spread through social networks as a contagious process with a positive-feedback loop in which people with fewer friends become increasingly isolated and lonely over time.
Most consider the current social environment of western societies to be a gross deviation from the human EEA, as anthropologists report stronger social cohesion and a near-total absence of time spent alone in traditional foraging societies. The extensive risk for physical and mental morbidity, e.g. anxiety, inflammation-related chronic diseases, etc., from social isolation offers support for an environmental mismatch.
Brandon H Hidaka. “Depression as a disease of modernity: explanations for increasing prevalence.” J Affect Disord. PMC 2013 Nov 1.
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. Additionally, exclusive reliance on the medical model in the diagnosis of other forms of neurodivergence, such as bipolar disorder, obsessive compulsive disorder, etc. prevents many people from seeking valuable support from neurodivergent peers.
Without the support of an ND whānau, Autistic life feels like a life in continuous emergency mode.
If we are lucky it feels like running an ultra-marathon for years or decades, often at the limit of what we can sustain physically, until we burn out emotionally. If we are unlucky, we crash and burn more abruptly, both physically and emotionally. Sooner or later, we reach the point where there is no path forward without a network of trustworthy neurodivergent whānau relationships around us.
Instead of misdiagnosing and pathologising Autistic people, and instead of medication to numb the dehumanising living conditions usually referred to as “industrialised civilisation”, people need caring and supportive relationships, activities they genuinely enjoy, and purposeful work that they genuinely believe in.
This applies to all people, but this observation can not be reiterated often enough in relation to hypersensitive Autistic people, who are often immediately sent down the medical route, based on dehumanising myths that are propagated by the Autism Industrial Complex and as a result of the profound lack of understanding of the social and sensory needs of Autistic people within mainstream society.
In this society people end up getting killed by the bullshit of social competition and toxic relationships. The web of life is something entirely different, it’s an ecology of care, and in their hearts people know it, especially hypersensitive and hyper-compassionate Autistic people.
Jureidini J. and McHenry L. B. The illusion of evidence based medicine. BMJ 2022;376:o702
This system needs to be dismantled. It is extremely cruel, not only to our bodies but also to our minds. Via Autistic trauma peer support we are starting to catalyse more positive experiences between Autistic people over extended periods of time.
But we need positive experiences every day, every week, every month, every year, and continuously over 10+ years. This is what it takes to recover from abuse, and to gain solid ground on top of which we can build further.
The Autistic / ND whānau concept and Autistic / ND communities are important and essential building blocks of a new emerging reality.
My Autistic survival strategy to date has been one of ignoring conventional advice, distrusting all hierarchical systems of “authority”, learning to trust what the sensations in my body and my mind are telling me, and never being afraid to resort to radical “environmental (re)engineering” whenever the opportunity arose.
I left a toxic home environment immediately after finishing high school. Along the way I discovered I could manage my allergic asthma by rigorously controlling my home environment (removing all sources of allergens) and by regular exercise, without any use of ongoing medication.
However, in my late 20s doctors warned me about unhealthy blood pressure readings, that I might have a heart attack within ten years, even though I always tried to eat healthy and tried to exercise whenever I found the time. To me the source of chronic emergency-level stress was obvious. I decided to drop out of traditional employment in my mid 30s, after coming to the conclusion that so-called jobs in the corporate world are not a survivable option.
Later, around ten years ago, after further traumatising “start-up” experiences with an investor, together with my partners and colleagues, we decided to eliminate all toxic competitive and profit oriented elements from the operating model of our small company, resulting the principles that power the NeurodiVenture model, which has served us well, and which we are still using today.
By conventional measures of “success” in rich countries (no regular income, and still paying off a mortgage), work-life balance (none), numbers of friends (limited to a few Autistic and neurodivergent people) etc. the overall result is mediocre at best. But I am Autistic, and the path that I have chosen is the only one that was survivable, the only one that is compatible with my Autistic way of being, and actually, over the course of the last ten years, my stress levels have come down, I am healthier than I ever was, and the small ecology of Autistic care around me is priceless, it is my Autistic whānau.
The social model of disability applies. We need to actively encourage environmental engineering, and we need to push back against toxic social expectations. I see it as my obligation to equip future generations of Autistic people with the tools and Autistic peer support that allow them to co-create healthy ecologies of care around them.
There is nothing wrong with Autistic people, but there is a lot of wrong with a society that systematically discriminates against all forms of diversity, and especially Autistic ways of being that involve non-participation in competitive social games.
Foundational social norms for Autistic / ND whānau
The Autistic / ND whānau concept is building on the foundation of the NeurodiVenture model, which enumerates and describes the social norms needed to de-power economic relationships.
With the ND whānau concept we are extending de-powered ND relationships to human scale groups of Autists and otherwise ND people who deeply care about each other, support each other in all kinds of ways that are not quantifiable in monetary terms, and who work and live together on a daily basis:
Communication is based on openness and honesty
Social power games are not tolerated
Members are committed to caring for each other’s wellbeing and to not hurting each other
The NeurodiVenture experience has led to a 7-year incremental journey of deepening mutual trust and joint projects towards full partnership. After 7 years, in our experience, it has become obvious whether a relationship is a lifetime partnership, i.e. it is one if the relationship still exists.
The simple foundational social norms we rely on not only benefit Autistic and otherwise ND people, they can be adopted in any context, to better serve the needs of all disabled and otherwise marginalised people within larger groups.
Along the way, some relationship attempts fail, and yes, that’s traumatising. But as long as there is a network of healthy de-powered relationships, the ND whānau, i.e. the biocultural organism, survives and at times thrives.
With the NeurodiVenture model we have “hacked” entrepreneurship, employment, finance, and money into de-powered lifetime partnerships based on mutual trust, egalitarian sharing of risks and resources, and development and operations of valuable services for wider society. With the Autistic / ND whanau concept we are “hacking” extended families, friendships, and romantic relationships into de-powered lifetime ecologies of care, de-powered partnerships based on mutual interests, and consenting sexual relationships.
The social structure of Autistic / ND communities
What we are aiming at with ND communities, and what we already have in embryonic form in terms of experience with ND whānau, has so far been beyond reach. But if we look carefully, we see every day how ND people are supporting each other, loving each other, and caring for each other in ways that go far beyond the culturally impaired neuronormative imagination. The social structure of ND communities is the same as the social structure in any other community:
An Autistic / ND whānau can be distributed across more than one community
A household can be part of one or more Autistic / ND whānau
A household is part of exactly one Autistic / ND community
Just as ethnic communities or LGBTQIA+ communities in specific cities can be overlapping and geographically dispersed to a certain extent, local or regional Autistic / ND communities can be interwoven with other communities and non-Autistic households.
The key point is that some households may select to identify as Autistic / ND, and select to focus on collaborations and relationships with other Autistic / ND households and individuals in their local community. In order for this to be viable, Autistic / ND communities need to be provided with appropriate government support and infrastructure to support community activities.
Thriving Autistic / ND communities, that act as local centres of Autistic / ND culture, can only come into existence if we can imagine new kinds of collaborations between Autistic / ND whānau and the rest of society, and if we allow designs to emerge organically from the collective intelligence that exists amongst intersectionally marginalised people at ground level.
The need to be resilient is something that Autistic people unlearn over time. We need to learn to be gentle with ourselves. With the concept of Autistic whānau we are exploring new terrain and new possibilities. It’s something that we can incrementally weave into the Autistic collaborations that are already established.
We care deeply about all the ones we love, and this is not limited to the human sphere. We are viscerally connected into our ecology of care by emotional bonds and shared experiences, and not by abstract cultural symbols.
Autistic people find interactions with the W.E.I.R.D. social world so traumatising, because that world is not predicated on relationships, mutual trust, mutual care, and shared joy, pain, and grief. The W.E.I.R.D. world is predicated on transactions, mistrust, exploitation, and betrayal. It is a world completely devoid of life and unconditional love.
The capacity for culture opens many traps for humans. Human history and the stories we tell us are full of them. Many humans have good intentions, but the cultural context desensitises humans, and turns many into zombified addicts looking for the next hit in social status and power. The addiction to adrenalin powers the junkies in financial markets. It’s very sad, to see them first hand. Most Autistic people are immune to these addictions, and this is why they are feared and sometimes hated and vilified.
Whānau : extended family, family group, a familiar term of address to a number of people – the primary economic unit of traditional Māori society. In the modern context the term is sometimes used to include friends who may not have any kinship ties to other members.
Whānau are not powered by adrenalin but by love and mutual care. Most Autists are not born into healthy Autistic whānau.
Takiwātanga : Autistic ways of being, takiwātanga literally means “in their own space and time.”
We have to co-create our whānau in our own space and time. In many indigenous cultures children with unique qualities are recognised, are given adult mentors with similarly unique qualities, and grow up to fulfil unique roles in their local community, connected to others with unique knowledge and insights, perhaps even in other communities. If we are embedded in an ecology of care, we can thrive and share the pain and the joy of life.
Whānau is much more than the Western notion of “family”. It is a deep connection, a bond that you are born into that no one can take away from you.
An Autistic whānau could be conceptualised as a soul tribe, it is not an amorphous global Autistic community, but rather a human scale ecology of care, consisting of Autistic relationships between soul mates that are bonded through shared experiences and working together.
Closely related concepts:
Whanaungatanga : relationship, kinship, sense of family connection – a relationship through shared experiences and working together which provides people with a sense of belonging. It develops as a result of kinship rights and obligations, which also serve to strengthen each member of the kin group. It also extends to others to whom one develops a close familial, friendship or reciprocal relationship.
Whakapapa : the “genealogical descent of all living things from God to the present time. “Since all living things including rocks and mountains are believed to possess whakapapa, it is further defined as “a basis for the organisation of knowledge in the respect of the creation and development of all things”. Hence, whakapapa also implies a deep connection to land and the roots of one’s ancestry. In order to trace one’s whakapapa it is essential to identify the location where one’s ancestral heritage began; “you can’t trace it back any further”. “Whakapapa links all people back to the land and sea and sky and outer universe, therefore, the obligations of whanaungatanga extend to the physical world and all being in it”.
In a healthy culture Autistic children are assisted in co-creating their unique Autistic whānau, but in our “civilisation” this cultural knowledge has been lost and is suppressed. In mainstream society people don’t understand how Autistic people support each other, love each other, and care for each other in ways that go far beyond the culturally impaired neuronormative imagination.
Every word in the title of the book on ‘The Beauty of Collaboration at Human Scale : The timeless patterns of human limitations’ has been very carefully chosen. But words have limits. What the title is trying to convey is that life feels like a dance of balancing all these words and concepts.
We’ll never be able to put a finger on it, so I say “feel” rather than “is”, and it is a dance because life is dynamic, it always evolves. Words like “perfection” or “success” are not part of the title, because they imply a universal sense of direction that regularly has gotten civilisations into trouble. Maybe the one unwritten word that emerges from the dance is “diversity”.
I spent my life until around 2014 developing a human scale meta language system – a formal visual grammar for creating all kinds of visual languages that are optimised for human cognitive limits. The motivation was similar to the motivations of Aboriginal symbolic artists over the last 70,000 years, cultivating a language system and a series of protocols for high fidelity knowledge transmission over thousands of years.
Since the Global Financial Crisis in 2007 my focus incrementally shifted from language systems to what I now refer to as human scale biocultural organisms and ecologies of care. This builds on all the earlier work on human scale language systems. With our small NeurodiVenture we now have 10 years operational experience with human scale biocultural organisms that are adapted to the needs of Autistic and otherwise neurodivergent people. Over the last 3 years I have found myself more and more involved in weaving biocultural organisms into larger ecologies of care that are beyond human comprehension, and that are not limited to humans. Mutual care at human scale, within biocultural organisms and between them, and evolution needs to replace the human hubris of “control”.
– Jorn Bettin
Those who are the most sensitive and traumatised and have not lost the ability to extend trust constitute an enormously rich and diverse repository of insights and hold many of the keys needed for co-creating ecologies of care. Collaboration at human scale within an Autistic whānau is truly beautiful, and having peers with us on our journey of expanding our parallel Autistic reality is wonderful.
When we engage in collaboration at human scale, we are nourishing our Autistic whānau. we are feeling well if the relationships in our whānau are providing the right kind of nourishment for everyone. As evolutionary biologist David Sloan Wilson points out, small groups are the primary organisms in human societies.
The following language is a useful anthropological toolkit for developing a nuanced understanding of different cultures, the relationships between humans, and the effects of Autistic trauma.
3×3 matrix of relationship types with parameters
Categories of relationships
whānau/Autistic whānau (kinship, biological or culturally assigned by the local culture), permanent
friendship, for the duration of mutual interest and consent
sexual, for the duration of mutual interest and consent
uni-directionally powered-up (culturally defined, or as a result of trauma)
bi-directionally powered-up (culturally defined, or as a result of trauma)
4×5 matrix of fundamental relationship types
Categories of relationships
biological kinship, permanent
[Autistic] whānau, culturally assigned kinship by the local culture or agreed between Autistic people, permanent
friendship, for the duration of mutual interest and consent
sexual, for the duration of mutual interest and consent
uni-directionally powered-up, culturally defined
uni-directionally powered-up, as a result of trauma
bi-directionally powered-up, culturally defined
bi-directionally powered-up, as a result of trauma
The language in which powered-up industrialised culture is being sold: A mix of
Note that the power dynamics associated with quantifiable “success” metrics constitute the essence of industrialised culture. In this paradigm the only escape from a toxic zero sum competitive game is the equally toxic delusion of infinite growth on a finite planet.
Traumatised industrialised Autistic culture:A mix of
Autistic whānau (depowered)
friendship (uni-directionally powered-up, as a result of trauma)
sexual (uni-directionally powered-up, as a result of trauma)
Coercive power is the root of all evil.
Depowered feral Autistic culture: A healthy Autistic culture involves a mix of the following depowered relationship categories:
Foundation: Autistic whānau (depowered, life-long self-chosen whānau relations, i.e. life-partnerships)
Extension: friendship (depowered, for the duration of mutual interest and consent)
Extension: sexual (depowered, for the duration of mutual interest and consent)
Note that the main criterion for the stable foundation is the life-long commitment. This is what makes it work as a healthy whānau construct. We are not using the term family, because families in the modern sense are too small to be viable and sustainable.
How Autistic trauma plays out over time
Human beings are relational. We can understand all of what we feel, think, and do in terms of relationships. Things went downhill when people started to think and act in terms of egos.
Trauma can play out in so many different scenarios. In all cases it always involves people exerting coercive power (in various forms) over others on an ongoing basis. And this is exactly what is “normalised” in powered up civilisations. It’s abuse by design, and it ripples through all of society, consistently marginalising those who refuse to join the social power games.
Dealing with our biological family is often exhausting. We feel drained, and can barely function. We may not find enough energy to wash our face or brush our teeth. We feel understood by our peers. We intuitively feel when other Autists are struggling, even if they don’t tell us.
We feel how our peers are struggling, because we recognise familiar patterns. Our heart, our mind, and our gut, every fibre of our body recognises the patterns. And we know this goes both ways. We understand each other’s struggles in a way that others can’t. This is what makes us human. This is what makes us Autistic. And this is what connects us to all of life, into the ecology of care that surrounds us when we are in a healthy environment.
It takes a very perverse kind of culture to reprogram non-autistic people so that they largely lose this capacity, and to traumatise many Autistic people to the extent that they can no longer extend trust to anyone, and develop a very dim view of humans. It is a culture that is perverted to the very core. It is the system that perpetuates itself until those Autistic people who are still capable of doing so start building a parallel reality. Those that do so must find ways of caring for each other so that no one gets sucked back into the vortex of the death spiral of “civilisation” and anthropocentrism.
We live in an insane world. In a sick society. For 10,000 years humans have been mainly concerned about “powering up” their relationships with each other and with the rest of the living world. Now hardly anyone sees the root cause and the route out of the death spiral. We have been building social sand castles in the tidal zone for several millennia, and still refuse to acknowledge that the next tide of social upheaval will arrive within the next 12 hours.
This “civilisation” is a normalised state of perpetual war. If a world of powered up relationships actually worked well if only power were less concentrated and more equally distributed, the way to resolve risks such as a nuclear war would involve finding a way of distributing the nuclear weapons arsenal equally across all nations. The flaw in reasoning is obvious. The problem is not distribution but the normalisation of using power.
Some of us have seen far too much violence in our lives already and have been traumatised in too many ways. Autistic people in particular end up in impossible situations far too often. It’s okay not to be okay in this world. We need to be there for each other. We can create much safer places, where we may still struggle, but not be put in impossible situations.
We are not failures at all. The biggest failure of this world is the notion of the arrow of progress and the associated notion of success. If we fail in this world it actually shows that we have kept a profound sense of integrity, and our bodymind has not been desensitised to the suffering in this world. Also, our body and mind suffer if we are not part of a healthy human scale biocultural organism.
Once we are part of an Autistic whānau, we need to experience that it’s always okay to ask for help, and that our entire whānau will take care of us. We can only thrive together. Individual failure and success are toxic concepts that have no place in an ecology of care. These words are meant to be understood literally. Members of Autistic whānau are travelling together, caring for and watching out for each other along the way.
Autistic trauma leads us to peer support, and this leads us to Autistic whānau, which is a concept with enormous potential that can’t be overstated. The negative compels us to work towards something uniquely beautiful that transcends the crippled sense of imagination in the society that surrounds us. It is this journey together with our Autistic whānau that makes life worthwhile and that allows us to incrementally heal from trauma.
We all deserve to be loved and cared for by an Autistic whānau and an ecology of care. We leave no one behind. It is together that we co-create the magic of a new reality that makes the old reality obsolete. Using the right words and refusing to use the words that the old system wants us to use is part of the magic. The old reality wants to draw people into life draining battles, because it feeds on the energy and souls of people.
The new reality appreciates the diversity of all forms of life. It is the billion year old magic that transforms the energy of the sun into the cycle of life and the beauty of art. Magic is the art of Autistic collaboration. We take care of each other in ways that others can’t. The impossible becomes possible. This happens with all depowered Autistic relationships. The old system does not stand a chance against collaborative ecologies of care consisting of Autistic whānau.
An example of Autistic care:
“…To achieve a ‘biosphere centric’ perspective, this author undertook about 13,000 hours of undergraduate studies in Earth Sciences while studying much more than degree requirements after a lifetime of reading, mainly living in a biodiverse but degrading rural area. It involved understanding the biosphere as a massively complex web of life that evolved from bacteria over billions of years and diversified into millions of species, all related to each other, all ‘earth creatures’, of which, Homo sapiens are just one species. It is possible that I have spent 60,000 hours on this task now without respite. For Our Family…”
When abused and traumatised Autistic children become adults, the abuse often carries on in a subtle way that is fully “normalised” for the abusers. Each time when abusive parents want to remind us of our childhood, they pretend to see happy times, and we see hell on Earth. Abusers need to do this to feel good about themselves. Many never apologise for anything. We see through delusional self-serving displays of affection. We’ve intuitively felt the fakeness even when we were small children. We recoiled when our parents tried to hug us.
Abusers have children to serve their own emotional needs, without ever considering the emotional needs of their children. In civilisations that normalise coercive power, children become the commodities needed to propagate the normalisation of power, the complete negation of the human potential for unconditional love and care, the negation of collaboration based on life-long trustworthy relationships at human scale.
Rebooting a parallel reality that is not infected with the seeds of the dying system is only possible from the ecology of care of feral depowered Autistic whānau that we are now nurturing into life.
Autistic people are highly sensitive. There is a whole boatload of ideas and mental models that we need to share to allow our peers to understand our context. It takes time, and it can all be done incrementally, and along the way we learn from each other. We will do anything to support the people we care deeply about. This becomes possible by focusing on human scale.
We need to learn to take care of ourselves as much as we take care of others. We notice all the energy, love, and care that our peers invest. We know what becomes possible by applying Autistic relationships in the context of an ecology of care that exists around our Autistic whānau, in the context of a growing network of depowered trusted relationships.
We know how it feels to be surrounded by slightly less sensitive but well meaning people who unknowingly pile further demands on us without even noticing. That’s where peer support can help identify overload. The more skilled and experienced we are at what we do, the more effortless it looks from the outside, and this leads some people to believe it is always easy.
Non-autistic people don’t see our struggles when we don’t tell them, and we are not telling them our struggles. We don’t complain. We probably get cranky and fussy about other things while people don’t understand while we are being cranky. We are not good at mentioning our needs and struggles, and especially not good at asking for help. In our childhood we learned not to express our needs and feelings. They were inconvenient for the people around us. So, we had to unlearn them. As children we learned that our needs and feelings are entirely irrelevant.
Deep down we still feel our needs and emotions are inconvenient and would be a burden. We learned that people are scared of our emotional intensity, so we learn to disconnect from our emotional side. But other people can not read our minds, and this leads to endless strings of misunderstandings.
That is one of the reasons compatible Autistic peers get along well. They intuitively pick each other’s needs and moods without needing to use many words. We are dependent on compatible Autistic peers expressing our needs and feelings.
Experiencing abandonment as a child shapes our entire life. Our top priority becomes to never ever inflict something like this on anyone. With the help and trust of depowered Autistic relationships around us we can for the first time have positive experiences, and this in turn shows us that a different reality is possible.
We can heal if we learn not to look for acceptance and love in the wrong places. Our honesty, selfless and open nature can become a deadly weapon against us. We see the worst version of nice people. We need to watch out for each other, so that people don’t exploit our goodwill endlessly.
Autistic people need Autistic healers. The healing is a shared experience. We need to heal in a safe place of mutual understanding. Anything else is a coping mechanism. That is why traditional therapy doesn’t work well with some Autistic people. We can not unlearn what we have learned. We are fixed.
Co-creating healthy depowered Autistic whānau
The Autistic whānau concept is an immensely valuable part of Autistic peer support, especially when it comes to trauma related to fear of abandonment. It is only when a stable reliable whānau foundation is in place at human scale that humans feel safe.
Only on top of a genuinely safe foundation of depowered whānau relationships can humans explore friendships and sexual relationships without fear of abandonment, because these are actually secondary, less foundational aspects of human social life. Regarding the social dimension and co-creating healthy depowered Autistic whānau, the following interviews are of interest:
Our basic needs are met via our whānau, especially if the whānau operates locally agreed internalised social norms that keep all relationships within the whānau depowered.
With the language introduced above, we can express the core of the problems in powered-up societies. Many relationships deteriorate and become toxic:
Instead of the commitment aspect of love, emotional support, and deep care, people get economic slavery at home, and economic warfare at scale
Instead of the friendship aspect of love, emotional support, and creative play, i.e. doing enjoyable things together, people get entrapped in career ambitions and other competitive social games, and at scale we end up with an energy and resource hungry socio-techological mono-culture
Instead of the sexual aspect of love, emotional support, and creative play, sex becomes a tool for emotional and physical abuse, and we end up will all the familiar social problems that we see all over the world
People knew this many hundred thousand years ago. It is no accident that the strongest social norms used to be norms against the emergence of power gradients. As soon a power enters a relationship, the quality of human / Autistic relationships is compromised, and the health of an entire biocultural organism suffers.
A single powered-up relationship causes stress in many other relationships. These observations will prove to be essential for healing from Autistic trauma and for co-creating healthy Autistic whānau going forward.
Small is beautiful. If at small human scales we co-create good company, and love each other and care for each other, we’re doing the things that are compatible with our evolutionary history. That would be a coordinated retreat from an overpopulated planet, and it would minimise human and non-human suffering.
We’ve got the necessary cultural toolkit. Now it’s a matter of deploying it locally, and not just online, in a relatively safe physical environment, with the kind of people who are ready for it. The toolkit consists of simple first principles rather than very specific cultural norms and tools. It’s more about being able to offer emotional support and being able to ask the right kind of questions to learn from each other in a safe environment than about having all the “answers”.
We deeply appreciate the care, love, protection, safety our peers can provide. It is an unusual feeling when we have never felt being taken care of the way that only other hypersensitive and traumatised Autistic people can.
When we spend time with other Autistic people, we know that life is worthwhile, that there is something worth struggling for – together. We know how it feels to struggle alone for decades, and for others to assume that we are strong and “resilient”. No, we are not that at all. The difference is that we have not lost the ability to care and love deeply, the ability to create healthy human cultures from scratch.
We need to put up a barrier to further abuse. In the same way that we can consistently use language to resensitise people to the need to co-create ecologies of care, we can use language to protect our minds from mistaking the people who raised us with people with whom we have healthy caring relationships, as we would have with parents who actually loved us unconditionally, without playing social games with us.
We need to learn to take good care of ourselves and to ask for help from trusted peers when we need it, whatever it may be. We can help each other ask for help, because this is something that we unlearn if we have spent too long in environments where no real help is available, and where asking may even be used against us.
Many wonderful Autistic people are continuously pushed to the limit. “Normality” or “reality” is the dark cloud that is tormenting us. Some of us are struggling every day. Autistic people are hypersensitive. In the fast paced world of industrialised busyness many of us are regularly affected by stress in the form of GI problems, migraine attacks, depression, and other symptoms of chronic anxiety.
We need to start doing something about the root causes, the causes of chronic stress. Otherwise “treatments” only address surface symptoms and we may attempt to power through dangerously stressful situations that take a toll on our mental health. We need to create ecologies of care around us, so that we can start to heal.
We often need love and care rather than many words. It helps to struggle together. It takes an Autistic whānau, an ecology of care, for us to continue. Knowing that we can count on each other keeps us going. Depowered Autistic relationships of love and care are the building blocks of Autistic whānau, i.e. healthy Autistic biocultural organisms.
We need to let each other know that there is a safe place in this world for all of us, and that many of us will do anything we can to help our peers get to a safe place. If people have manipulated or exploited us, it is not our fault. We have agency. We can shape safe places so that they meet our needs, and we must learn not to be afraid to ask our peers for help.
We wish to address the Lancet Commission on the future of care and clinical research in autism on behalf of the Global Autistic Task Force on Autism Research, a committee comprising autistic advocates, researchers and representatives of organisations by and for autistic people.
As the Commission emphasised the importance of collaborative participation, we look forward to being included as collaborators. We appear to have remained largely invisible, generalised briefly as ‘the neurodiversity movement’.
It is encouraging that the need for system change and the value of neurodiversity were recognised by the Commission. However, some omissions contradict this message. Studies mapping autistic people’s priorities regarding research were not mentioned. Participatory research was mentioned but not defined, nor was literature on its principles cited.
We find the proposal to adopt the term ‘profound autism’ highly problematic, as well as the overall emphasis on behavioural interventions, excluding more recent, promising approaches. We disagree with the recommendation to focus clinical research on randomised controlled trials for short-term interventions, including medication and behavioural trials.
To improve autistic lives, we need concepts developed by autistic scholars applied to clinical research. We need research on causes of mortality, access to health care, and improving mental health support. We need research on screening and diagnosis for all countries, and the health consequences of system factors: discrimination, mistreatment, poverty and lack of access to appropriate services. We need closer involvement of autistic people to ensure that clinical trials are truly ethical, and to curb the development of pseudo-treatments.
We call for shared, accessible platforms to continue the discourse and start building collaboration.
Thanks to wonderful Autistic conversations I think I am beginning to understand why I feel so much at home in the ocean. To date I had not connected it to healing from Autistic trauma, but now I see the connection with increasing clarity.
Firstly, that much I knew already, besides the air and remote mountain regions, the ocean is one of the few environments that at least superficially is not shaped by humans. But of course in terms of pollution and pH, and in terms of the growing number of fish farms, this is no longer true.
Secondly, and this is the part I am only fully realising as part of Autistic dialogues, the pace of life in the ocean is much more in tune with a pace that is compatible with humans cognitive capacities and limits than life in human urban environments.
Let me explain:
The universal law of underwater movement
The density of water (800 times higher than air) means that drag is very significant, which means that all living creatures move much slower in water than on land. Also any jerky movements only cost extra energy. Underwater life is about going slow and making smooth movements, or simply staying still, observing the environment with all your senses. You can learn how to do it by observing the fishes around you.
You learn the universallaw of movement intuitively. You learn how to not disrupt the flow of life. Any fast movement, and whatever you were curious about has disappeared into a crack in the reef, or is moving away from you with streamlined bodies that are several times faster underwater than any human, fast disappearing beyond your limited horizon of visibility. Moving fast underwater amounts to a violation of a law of nature. You are immediately recognised as a threat.
All you need to do to be part of the life of the ocean is to slow down and follow the universal law of underwater movement.
For me the universal law of underwater movement has become associated with the feeling of being at home. This feeling is reinforced by the taste of salt water. If I have an addiction it is the addiction to being immersed in water and tasting salt water.
I think for an Autistic people the universal law of underwater movement acts as the braking assistant/buddy that we so often lack in W.E.I.R.D. human social environments.
The ocean environment has healing properties for Autistic people.
Orientation and proprioception in the ocean
Because the human body consists mostly of water, i.e. has the same density, you don’t notice any difference in blood pressure in your head, no matter which way you are oriented. Any position is just as comfortable as any other.
You are floating in space, completely effortlessly. This only reminds you to literally take it easy, and to go slow, because the high level of drag means that there is absolutely no point in attempting to go fast, especially if you have a SCUBA tank on your back – which weighs nothing, but which slows you down with further drag.
When you are free-diving it is even more important to go slow, because you can go much further/deeper by going slow – attempting to go fast only increases oxygen consumption and limits your range. A corollary of the universal law of underwater movement:
Underwater, less effort lets you travel farther!
Vision and scope of visibility in the ocean
Visibility is often limited to less than 10m, sometimes much less, and at the very best 40 metres. This means the visible world is small.
Brightness and contrasts are rapidly reduced with increasing depth. The world starts to look very different 10m below the surface and beyond. Blue becomes the dominant colour, and even if you look up, the source of light from the surface is very pleasant to look at, never too bright.
Also water tends to feel cooler than air. It is so pleasant to immerse the head under water after having had a migraine. No bright lights, and your head is being cooled from all sides.
Sounds and scope of hearing in the ocean
Sound travels more than four times faster underwater than in air. It means human ears can’t determine where sounds are coming from, but it also means sounds travel over great distances, and you always hear things that are far beyond the sphere of vision.
The underwater world is a world of mysterious sounds that have no origin. You are embedded in the soundscape of the universe. Anything that makes a sound is making its presence felt everywhere at once. Sounds become completely divorced from our sense of space. They simply exist, and it is only by accident, when you visually see something, like a parrot fish picking at the reef, that you can connect specific sounds with a spatial location.
The sounds of the ocean can become familiar like the sounds of a forest. They can underscore the feeling of being home.
Pressure in the ocean
The water pressure at 10m is twice the air pressure at surface level. This means that all the air in all air filled body cavities is compressed to half the volume at a depth of 10m, to one third the volume at 20m, etc. When you are free-diving you feel the compression in your upper chest, and this gives you an intuitive sense of depth that is reinforced by the change in colours around you. When SCUBA diving you breathe air at the same pressure as the surrounding water, then the change in colours is the only indicator of depth.
You can train your Eustachian tubes to open up and equalise the pressure in your ears when diving down, without needing the manual “blowing your nose” assistance.
Furthermore, humans, like all air breathing mammals, have a dive reflex. This means that our heart rate slows down when immersed in water, especially when we are holding our breath. When free-diving you can train yourself to feel your heart rate, and you can use meditation practice, to calm down as much as possible, to maximise your level of comfort and your underwater range.
Again, slowing down allows you to go farther.
Being in the ocean is pure Autistic joy. It is a safe space in the non-human world, it is a space that allows us to recover from the human madness of busyness.
Autistic trauma peer support
In 2022 the Autistic Collaboration community is in the process of co-creating and operationalising peer support services for Autistic Trauma based on the lived experiences of Autistic people all over the world.
We invite our Autistic peers (you) to contribute lived experience to the Autistic trauma peer support project, as needed anonymously, so that we can co-create services around the diverse needs of Autistic communities.
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 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
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.
This series of panel discussions is part of the global Ban Conversion Therapies project, which keeps track of all the bans of conversion therapies that are already in place and of all initiatives towards bans.
“Conversion therapies” are pseudoscientific practices of trying to change an individual’s behaviour to conform to the social expectations of a particular culture using psychological and physical interventions.
Various jurisdictions around the world have passed laws against LGTBQIA+ conversion therapy. However, the same underlying techniques of coercion continue to be applied to young autistic children and other vulnerable people.
Dr Elizabeth Kerekere MP: It seems to me that communities/people with disabilities have been excluded from this bill. It seems that if you are prohibiting a practice, then we should prohibit it whoever it happens to, and I have certainly been approached by the members of the Autistic community and by other people, especially from the Deaf community, and people with other forms of disability, who have all had experiences of this. Have you thought about, if it is not this bill that can do that, where else this might sit, because we have concerns from people about intersex people, so on one level a bill should say whoever harm is being caused, whoever it happens to, that should be included, but separately from that, if we looking to do major change in the way the health system works, have you thought about other ways to make that change?
Jorn Bettin: We see this bill as a chance to make a start towards greater levels of inclusion, and what we are proposing in very concrete terms is that the bill can very easily be extended to include all neurodivergent people, not limited to autistic people. We realise that there is much more work that needs to be done, to actually at ground level effect those changes. We need to change the culture, to create a much more inclusive culture, because it is ultimately the life experience of neurodivergent people. Certainly from personal experience I can speak from an autistic perspective, society is traumatising us. We are being traumatised not because we are autistic, but it’s the way our society works, and the way society imposes constraints on autistic people that are incompatible with our humanity.
Vanushi Walters MP: Thank you Jorn again for your submission, but also for raising very valid concerns about the experiences of autistic people. And I think from my part the terminology of identity foreclosure isn’t one I’d heard before, and I think it has usefully lent to this discussion, but also probably other discussions that we may be having in the discrimination space, so thank you again.
You are invited to listen to our series of international panel discussions to progress towards comprehensive bans of all forms of conversion therapies (including ABA).
Background on the CRPD
The Convention on the Rights of Persons with Disabilities and its Optional Protocol (A/RES/61/106) was adopted on 13 December 2006 at the United Nations Headquarters in New York, and was opened for signature on 30 March 2007. There were 82 signatories to the Convention, 44 signatories to the Optional Protocol, and 1 ratification of the Convention. This is the highest number of signatories in history to a UN Convention on its opening day. It is the first comprehensive human rights treaty of the 21st century and is the first human rights convention to be open for signature by regional integration organizations. The Convention entered into force on 3 May 2008.
The Convention follows decades of work by the United Nations to change attitudes and approaches to persons with disabilities. It takes to a new height the movement from viewing persons with disabilities as “objects” of charity, medical treatment and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.
The Convention is intended as a human rights instrument with an explicit, social development dimension. It adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. It clarifies and qualifies how all categories of rights apply to persons with disabilities and identifies areas where adaptations have to be made for persons with disabilities to effectively exercise their rights and areas where their rights have been violated, and where protection of rights must be reinforced.
The Convention was negotiated during eight sessions of an Ad Hoc Committee of the General Assembly from 2002 to 2006, making it the fastest negotiated human rights treaty.
Further panels in 2022
We will host further panel discussions and coordinate between national campaigns in 2022 and beyond, until the human rights of autistic people (including protections from all forms of conversion therapies) are adequately supported by appropriate protocols in all countries that have signed the Convention on the Rights of Persons with Disabilities.
In case you have not already done so, please sign the current petition to ask the Aotearoa New Zealand government to investigate the consequences of all forms of conversion therapy, including conversion therapies that target autistic children, which are often branded as Applied Behaviour Analysis (ABA) or Positive Behaviour Support (PBS).
Note: all international support is welcome as well. Those who don’t reside in Aotearoa New Zealand can sign the petition with postcode “0000”. This allows us to easily distinguish the level of local support from international supporters.