Co-creating a Centre of Autistic Culture in Auckland, Aotearoa

Photo by Sulthan Auliya on Unsplash

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.

Scope

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:

  1. To improve the lives and the overall well-being of Autistic people.
  2. 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?

Phase 0

Forming a design team of about 7 local Autists living in Auckland.

Phase 1

The team will jointly elaborate the design principles in considering the following scope:

Users:

  1. 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)
  2. Companion/child accompanying an Autistic adult
  3. The general public (access is limited to scheduled cultural events)

Draft use cases:

  1. A café and eating space that is safe for Autistic people
  2. Some quiet desk work spaces with the possibility for small group work
  3. Quiet room
  4. Library
  5. 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. :

  1. Acoustics
  2. Lighting (multiple options, none of them fluorescent)
  3. Colours
  4. As non-clinical as possible, and not like something that was designed by a city council

Additionally submitted ideas and suggestions:

  1. 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.
  2. 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.
  3. Will Braille books be made available in the library for those who may also have visual impairments?
  4. Lots of power points to plug in and recharge devices.
  5. How will temperature control work?
  6. 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.
  7. 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.
  8. Easily accessible information & signage.
  9. Textured interiors.
  10. Sensory rooms.
  11. Tactile breakout areas – perhaps a sandbox.
  12. I’m a holistic counsellor so sensory spaces and room for movement meditation would be fantastic.

Phase 2

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.

Phase 3

Implementation: building or adapting a space to fit the design

Phase 4

Operations

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)

Sign

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.

From Wikipedia:

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.

The time for change is now.

Education about Autistic culture, the ND paradigm, and the ND movement – for medical professionals, by Autistic people

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.

Sign

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.

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?

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?

Topics:

  1. Motivation
  2. Terminology
  3. The social model of disability
  4. Dimensions of divergence from neuronormativity
  5. Intersectionality
  6. Autistic ways of being and the LGBTQIA+ kaleidoscope
  7. Autistic ways of being and ADHD ways of being
  8. The communal definition of Autistic ways of being / Takiwātanga
  9. Anthropological background
  10. Exposing the cultural bias of normality
  11. The role of the Diagnostic and Statistical Manual of Mental Disorders
  12. Transdisciplinary understanding of human learning and wellbeing
  13. The connection between neurodiversity and creativity
  14. Ableism and lived experience
  15. 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?

Topics:

  1. Historic background
  2. Cultural bias against creativity, critical thinking and transdisciplinary collaboration
  3. What is happening in the neurodiversity movement right now
  4. Behaviourism in parenting, education, workplaces, economics, and the sciences
  5. Disability in a sick society
  6. Cultural safety and the human rights perspective
  7. Psychological safety
  8. What therapies and medical practices do Autistic adults consider unsafe / safe / useful?
  9. Autistic communities
  10. Towards comprehensive bans of conversion therapies
  11. Overcoming cultural inertia in a time of exponential change
  12. Design BY and WITH neurodivergent people
  13. Advice process
  14. Introduction to Open Space as a transformational tool
  15. Guidance for making good use of Open Space
  16. 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?

Topics:

  1. Discovering Autistic way of being
  2. Autistic language
  3. Learning without imitation
  4. Autistic collaboration
  5. Competency networks
  6. Minimising misunderstandings
  7. Exposing social injustice
  8. Raising healthy children
  9. Creating thriving communities
  10. Towards mutual understanding and a better world
  11. Difference drives humanity forward
  12. Autistic clinicians, nurses, social workers, lawyers, accountants, scientists of all stripes, mathematicians, artists, musicians, engineers, and entrepreneurs
  13. Deep innovation
  14. Evolutionary design

For paediatricians

  1. What do paediatricians need to know about Autistic culture?
  2. What do Autistic people want paediatricians to know?
  3. What books could a paediatrician or parent read if they wanted to learn more?
  4. Other useful resources for paediatricians and parents

Autistic trauma

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?

Topics:

  1. Sensory overload
  2. Physical symptoms of dis-ease
  3. Mental symptoms of dis-ease
  4. Traumatising diagnostic experiences
  5. Industrialisation and W.E.I.R.D. social norms
  6. Trauma caused by coercive techniques
  7. Trauma caused by social power gradients
  8. Trauma caused by group identities
  9. Avoiding and healing from hypernormalisation
  10. Avoiding and healing from reductionism
  11. Avoiding and healing from behaviourism
  12. Avoiding and healing from bullying
  13. Avoiding and healing from othering

Signatories

Last update: 19 July 2022

Healthcare professionals

  1. Dr. A. Ann Emery, Allied health professional, Psychologist, Canada
  2. Dr. Alan Beach, PhD, LCSW, LMFT, Allied health professional, Clinical Social Work & Family Counseling/Psychotherapy, United States
  3. Aly Dearborn, LMFT, Allied health professional, Psychotherapist, United States, Autistic
  4. Amanda Curran, Allied health professional, Australia
  5. Amanda Hart, Nursing professional, S a c t nursing sister, United Kingdom, Autistic and otherwise neurodivergent
  6. Amber Lane, Allied health professional, United Kingdom, Autistic and otherwise neurodivergent
  7. Ana Karemy López Cortes, Licenciatura, Healthcare administrator, psicologa, México, Autistic and otherwise neurodivergent
  8. Andrea Afonso, Physician, Portugal
  9. Andrea Beres, Allied health professional, Psychologist, Australia
  10. Annette Collins, Allied health professional, Australia
  11. Ariel Lenning, Physician, Optometric physician, Optometry, United States, Autistic
  12. Dr. Ashley Dubin, PhD, Allied health professional, Psychology, United States, Otherwise neurodivergent
  13. Brannen Clark, Allied health professional, United States, Autistic
  14. Becki Woolf, Allied health professional, United States
  15. Brian Hess, Allied health professional, United States
  16. Brian Moran, Nursing professional, United States
  17. Carol Beatty, Allied health professional, Counsellor, Couples’ Therapist, United Kingdom
  18. Casey Wilson, Allied health professional, United States
  19. Cecilia Barbosa, Allied health professional, United States
  20. Chanlynn Liao, Allied health professional, Speech-language Therapist, United States
  21. Chelsea Mongan, Nursing professional, Nurse Practitioner, United States, Autistic and otherwise neurodivergent
  22. Doraine Raichart, Allied health professional, United States, acupuncturist and Eastern medicine practitioner
  23. Elizabeth Williams, Allied health professional, United States, Autistic and otherwise neurodivergent
  24. Emma Ward, Allied health professional, United Kingdom
  25. Fernando Rodríguez, Allied health professional, España
  26. Heather King, Allied health professional, Speech-Language Pathologist, Australia, Autistic
  27. Holly Sprake-Hill, Allied health professional, United Kingdom, Otherwise neurodivergent
  28. Ian Reid, Nursing professional, United Kingdom
  29. Ioannis Voskopoulos, Allied health professional, Greece, Otherwise neurodivergent
  30. Iuliana Sava, Allied health professional, Psychologist, United Kingdom, Autistic
  31. Jess Hodges, Allied health professional, Psychotherapist, Australia, Autistic and otherwise neurodivergent
  32. Jessica Kitchens, Allied health professional, Mental Health, AA Therapist and Advocate, United States, Autistic and otherwise neurodivergent
  33. Jessica Newland, Allied health professional, United States, Autistic and otherwise neurodivergent
  34. Jonathan VanLandingham, Nursing professional, Registered Nurse, United States, Autistic and otherwise neurodivergent
  35. John Finnegan, Allied health professional, United States
  36. Julie McCarthy, Allied health professional, Australia, Otherwise neurodivergent
  37. Kali Rees, Allied health professional, United Kingdom
  38. Karen Scorer, Allied health professional, United Kingdom
  39. Katrina Fiebig, Allied health professional, Patient/Family Advocate, Psychiatry, Nursing professional, United States
  40. Kristen Ipson, Allied health professional, Speech-Language Pathologist, United States, Otherwise neurodivergent
  41. Lauren Lopez, Nursing professional, LPN, RN, Public Health, United States, Autistic and otherwise neurodivergent
  42. Luke Shobbrook, Allied health professional, Counselling Psychologist, Psychology, Jersey
  43. Maija Mills, Allied health professional, Physiotherapy, Canada, Autistic
  44. Marie Manalili, Allied health professional, Speech/Language Pathologist, Philippines, Autistic and otherwise neurodivergent
  45. Marta Louise, Allied health professional, Canada, Autistic and otherwise neurodivergent
  46. Dr. Megan Anna Neff, Allied health professional, Psychology Resident, United States, Autistic and otherwise neurodivergent
  47. Meredith Thompson, Allied health professional, Licensed Independent Clinical Social Worker, Social work, United States, Otherwise neurodivergent
  48. Miah Pavlik, Nursing professional, United States, Autistic
  49. Miranda, Nursing professional, Canada, Autistic and otherwise neurodivergent
  50. Monica Boyd, Healthcare administrator, Education, Canada
  51. Nicola M, Allied health professional, United Kingdom, Otherwise neurodivergent
  52. 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
  53. Dr. Patricia Burkhart, Physician, Radiologist, United States, Autistic
  54. Paula Gómez, Allied health professional, Australia, Otherwise neurodivergent
  55. Raphael de Miranda Luz Trindade, Physician, Portugal, Autistic
  56. Sandy Rayman, Allied health professional, Therapist, United States
  57. Sara Schultz, OD, Physician, optometrist, United States
  58. Stephanie Warm, Allied health professional, psychotherapist (LCSW), United States
  59. Svanhildur Svanvarsdottir Kristjansson, Allied health professional, Autism consultant, Speech Language Pathologist – TEACCH advanced certified consultant, United States, Otherwise neurodivergent
  60. Tara O’Donnell-Killen, Allied health professional, Ireland, Autistic
  61. Dr. Terry Hannan, A/Professor, Physician, General Internal Medicine and eHealth, Australia
  62. Tonya Makar, Allied health professional, United States, Otherwise neurodivergent
  63. Tracey Nelson, Allied health professional, Australia
  64. Vanessa MacKay/ OT, Allied health professional, United States, Otherwise neurodivergent
  65. Dr. Zoe Raos, Gastroenterology, Physician, Aotearoa New Zealand

Patients

  1. Alden Blevins, United States, Autistic and otherwise neurodivergent
  2. Alix Latta, United States, Autistic
  3. Ama Love, United Kingdom, Autistic and otherwise neurodivergent
  4. Amanda Sutton, United Kingdom
  5. Bailey Wagner, Canada, Autistic and otherwise neurodivergent
  6. Brina Simon, United States, Autistic and otherwise neurodivergent
  7. Candace Jordan, United States, Otherwise neurodivergent
  8. Caroline Kimrey, United States, Autistic and otherwise neurodivergent
  9. Catherine Andrews, United States, Autistic and otherwise neurodivergent
  10. Dan McFarland, United States, Autistic and otherwise neurodivergent
  11. Daniel Aird, Senior Research Associate (Biotech / cancer field; but am very well versed in science), United States, Autistic and otherwise neurodivergent
  12. Heather Johnson, Writer, United States, Autistic and otherwise neurodivergent
  13. Heather Steeves, United States, Autistic and otherwise neurodivergent
  14. Herman Langkamp, Nederland, Autistic
  15. Jacki Edry, Author, educator, advocating for neurodiversity and inclusion, parent of neurodivergent children, Israel, Otherwise neurodivergent
  16. Jax Bayne, United States, Autistic
  17. JC John Sese Cuneta, Philippines, Autistic
  18. Jessica Nabb, Australia, Autistic
  19. Kae Peterman, United States, Autistic and otherwise neurodivergent
  20. Karen Sydow, Australia, Otherwise neurodivergent
  21. Khaenin Rutherford, United States, Otherwise neurodivergent
  22. Linda Guevara, Mexico, Otherwise neurodivergent
  23. Lisa W, United States, Autistic and otherwise neurodivergent
  24. Lucy Reid, United Kingdom, Autistic and otherwise neurodivergent
  25. Liz Pine, United States, Autistic
  26. Martin Bryan-Tell, United States, Autistic and otherwise neurodivergent
  27. Matthew R, United States, Autistic and otherwise neurodivergent
  28. Meg Bradshaw, Canada, Autistic and otherwise neurodivergent
  29. Natasha Trotman, United Kingdom
  30. Rachel Millar, Australia, Otherwise neurodivergent
  31. Rachel Morton, United States, Autistic
  32. Renata Moreno, Chile, Autistic and otherwise neurodivergent
  33. Rome Icasiano, United States, Autistic
  34. Ryan Boren, United States, Autistic and otherwise neurodivergent
  35. Stephen Dooley, United Kingdom, Autistic and otherwise neurodivergent
  36. Suzanne Galloway, Australia, Autistic and otherwise neurodivergent
  37. Sydney Warner, United States
  38. T. Purk, ASD Researcher and Educator, United States, Otherwise neurodivergent
  39. Traci Collins, United States, Autistic
  40. Victoria Busuttil, United Kingdom, Autistic and otherwise neurodivergent
  41. Wendy Garfield, United States, Otherwise neurodivergent

Autistic ways of being, trauma, and diagnosis

Living in our global industrialised society is traumatising, especially for hypersensitive Autistic people, and this has increasingly been the case since the earliest days of industrialisation, even before the term “autism” entered the vocabulary of the medical profession.

Adults seeking a diagnosis of autism are often looking for an explanation of their lived experience, which often includes highly traumatic experiences, in many cases starting in childhood. Parents seeking a diagnosis for their child are typically driven by the fear that their child won’t be able to “succeed” in the competitive world of so-called education, jobs, careers, and social status.

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.

Discrimination against Autistic people is comparable to the level of discrimination against LGBTQIA+ people 50 years ago. The pathologisation of Autistic ways of being has led to what some critical researchers refer to as the Autism Industrial Complex.

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.

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

  1. to question the value of official diagnosis,
  2. to consider the value of Autistic peer support networks,
  3. and to focus on what can be achieved by co-creating healthy Autistic communities.

An anonymised diagnostic experience

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:

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.

In Summary:

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?

My story

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

I am no where
I am no when
I am no one

References

Agarwal, Pragya (2020) Sway: unravelling unconscious bias, London, Bloomsbury Sigma

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

Professional Standards in Australia

Antidiscrimination legislation in Australia

United Nations

Violence Against Autistic Women and Girls and People with Disabilities

Open letter to the Lancet Commission on the future of care and clinical research in autism

14th February 2022

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.

Signatories

(country codes in parentheses)

European Council of Autistic People (EUR)Heta Pukki (President)
Martijn Dekker (Board member)
Autistic Self Advocacy Network (INTL)
Collectivo Autista Mi Cerebro Atípico (INTL)Bárbara Herrán (CEO)
Autistic Doctors International (INTL) Mary Doherty (ADI Founder)
Sebastian Shaw (ADI Research Lead)
Sue McCowan (ADI Psychiatry Lead)
Participatory Autism Research Collective (UK)Damian Milton (Chair) 
Autismus-Forschungs-Kooperation (DE)Silke Lipinski (for the working group)
Autistic Collaboration Trust (INTL)Jorn Bettin (Chairperson)
Quinn Dexter (Advisory Board Member)
Lees- en Adviesgroep Volwassenen met Autisme (BE)Jo Bervoets
Autism Rights Group Highland (UK)Kabie Brook (Chairperson)
Joshua Hennessy (Assistant Chairperson)
Asociación Autistas de Colombia (CO)Monica Vidal Gutierrez
The Autistic Realm Australia Inc. (AU)Kylieanne Derwent (Co-Founder & Vice Chair)
estas, Adult Autistic Self-advocacy Meeting (KR)Yoon, wn-ho, Jang Jiyong (Co-moderators),
Onemoo Lee
Asociația suntAutist (RO)Ovidiu Platon (Chair)
Suomen Autismikirjon Yhdistys (FI)Minna Brockmann (Chairperson)
Annikka Suoninen (Project Coordinator)
PAS Nederland (NL)Tammo Michel (chairperson / secretary)
Otoemojite (neurodiversity self-help group)(JP)Satsuki Ayaya
CLE Autistes (FR)Garance Jacquot (Secretary) for the Board
Autisme- og Aspergerforeningen for Voksne (DK)Nina Catalina Michaelsen (Chairperson) 
Silke Rudolph (Board Member/Treasurer) 
Inicijativa za autizam i ostale neurodivergentnosti,
samozastupanje i kulturu različitosti ASK
(autistic initiative)(HR)
Kosjenka Petek, Sunčica Lovrečić Čekić
Aspies e.V. (DE)Hajo Seng, Rainer Döhle (Chairs)
Autistics Unmasked (US)Heini Natri
Adventor o. s. (CZ)Michal Roškaňuk (Chairman)
A-komunita (CZ)Vojta Bartošík (Chairman)
Asociación Autistas de Mexico (MX)Yadira Garcia Rojas (President)
Giovanna Villarreal Estrada ( Secretary)

References

organisationlink
EUCAPhttps://eucap.eu/2022/02/14/open-letter-to-lancet-commission
ASAN
Mi Cerebro Atípicohttps://www.facebook.com/527565417690268/posts/1375175466262588/(Spanish)

https://twitter.com/Cerebro_Atipico/status/1493196115096842241 (Spanish)
PARC
AFK
Autistic Doctors International
Autistic Collaboration Trusthttps://autcollab.org/2022/02/14/open-letter-to-the-lancet-commission/
LAVAhttps://lavautisme.wordpress.com/2022/02/13/open-brief-14-2-2022/
ARGH
Asociacion Autistas de Colombiahttps://www.facebook.com/100442532355847/posts/152930233773743/(Spanish)https://www.facebook.com/100442532355847/posts/152930483773718/(English)
TARAwww.tara.org.au  
estas
suntAutisthttps://www.suntautist.ro/viitorul-ingrijirii-si-cercetarii-clinice-in-autism-scrisoare-deschisa-catre-comisia-lancet/
Suomen Autismikirjon Yhdistyshttps://asy.fi/avoin-kirje-lancet-komissiolle
PAS Nederlandhttps://www.pasnederland.nl/home/open-brief-aan-de-lancet.html 
Otoemojitehttps://otoemojite.com/20220214openletter/ 
CLE Autisteshttps://asso.cle-autistes.fr/lettre-ouverte-a-the-lancet-autisme-profond/
AAFVhttps://aspergerforeningen.dk/nyheder/2205/aabent-brev-til-the-lancet-commission-on-the-future-of-care-and-clinical-research-in-autism
ASKhttps://www.atipicni.hr/nista-o-nama-bez-nas/
Aspies e.V.https://aspies.de/offener-brief-zu-einem-autismus-artikel-der-lancet-kommission/
Autistics Unmasked
Adventor
A-komunita
Agrupación Pregúntale a los adultos autistashttps://www.facebook.com/groups/respuestasdeautistas/
Autista Construyendo https://www.facebook.com/AUTISTACONSTRUYENDO/posts/488768579439403 (Spanish)
Asperbuhohttps://www.facebook.com/AsperBuho1090/posts/1292785927867616 (Spanish)
Con estilo autistahttps://www.facebook.com/ConEstiloAutista/posts/469504724818250 (Spanish)
Aprender A Querermehttps://www.facebook.com/aprenderaquererme/posts/359307272863356
Neuropeculiarhttps://neuropeculiar.com/2022/02/14/lettera-aperta-alla-commissione-lancet/

The Autistic pace of life in the ocean

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 the a of life 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 universal law 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.

From pseudo-philosophical psychiatrists to openly Autistic culture

Click your language to read:

English / Français / Español / Deutsch / 中文 / 日本語 / 한국어 / עברית / فارسی / العربية / русский / Azərbaycanca / Català / Česky / Eesti / Eλληνικά / Filipino / Indonesian / Íslenska / Italiano / Kurdí / Magyar / Nederlands / Polski / Português / Slovene / Suomi / Türkçe / Bosanski-Hrvatski-Srpski

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:

  1. The mental and physical health impact of industrialisation in terms of sensory overload and commodification of human relationships.
  2. The W.E.I.R.D. social norms that present the hyper-competitive industrialised social operating model as a form of “progress”.
  3. Behaviourism: the pervasive use of coercive techniques for perpetuating W.E.I.R.D. social norms.
  4. The normalisation of social power gradients, to legitimise the use of coercive techniques and dehumanising treatments.
  5. The uncritical promotion of abstract group identities and “brands”, to make human behaviour more predictable and humans more exploitable in the name of abstract financial profit.

The cultural bias that is baked into the pathologising framing of the diagnostic process compounds the trauma and perpetuates internalised ableism.

Pseudo-philosophical psychiatrists

Recently I came across an introductory course for GPs. I took the time to take the course. Now I am educated in how to identify Autistic people with pathologising language and refer them to pathologising diagnosticians for further “assistance”. The framing and the pathologising language is quite problematic, as it reinforces the perception of parents that their child is defective / disordered / deficient, and then makes them receptive to the advertisements from the ABA industry.

We urgently need to educate healthcare professionals and the wider public about the neurodiversity paradigm, the neurodiversity movement, and Autistic culture.

In 2022 the Autistic Collaboration Trust is offering dedicated education courses specifically for clinicians and other healthcare professionals, especially for paediatricians and GPs, but also for physicians in various other specialised disciplines, to ensure that the preliminary screening and referral process is non-traumatising.

We are starting in Aotearoa New Zealand. If you would like to assist in extending the reach of these education courses, please get in touch.

The level of ignorance and hostility that Autistic people regularly have to deal with is nauseating. Here is a quote from a brand new book (2021!) by psychiatrist Iain McGilchrist that gave me a migraine headache a few weeks ago:

“Tony Attwood, an acknowledged expert on the autistic spectrum, writes that there is a ‘quasi-philosophical quality’ to the autobiographies of adults with Asperger’s analysis’. What he is referring to is generally accepted to be an over-rationalistic, hyper-reflexive self-awareness, and a disengagement from emotion and embodied existence, which is very much in accord with my experience of looking after subjects on the autistic spectrum. Moreover, there is an abstract, quasi-philosophical mode of talking that is common in some kinds of schizophrenia, at first impressive, but ultimately recalcitrant to understanding; it is sometimes actually referred to as ‘pseudo-philosophical thought disorder’. Both autistic and schizophrenic individuals have an antipathy to what is embodied, uncertain and unknown (or unknowable), preferring what is abstract, certain and known, all of which is characteristic of the left hemisphere.”

This is an example of the double empathy problem in action. The unfamiliar Autistic mind is judged from the outside, neuronormative insistence on conformance is not viewed as rigid, but Autistic approaches to deal with/avoid sensory overload are interpreted as “an antipathy to what is embodied, uncertain and unknown”, and similarly, questioning established neuronormative cultural abstractions is viewed as “recalcitrant to understanding”. The “subjects on the autistic spectrum” don’t get a voice, and are replaced by “my [neuronormative] experience” from the outside.

How are Autistic people supposed to react when confronted with such nonsense in books from esteemed psychiatrists and in “diagnostic” interviews?

“Pseudophilosophical thought disorder”? I’d love to know, how many *real* philosophers this McGilchrist character has met…

The framing is especially hilarious if you consider the “reasoning” McGilchrist employs in the quoted passage above. There is a lot to be said for transdisciplinary reasoning, but in medicine some feel competent to do so in isolation, without involving those with deep knowledge of relevant domains. In this pathologising language an Autistic philosopher can only ever be a pseudo-philosopher.

I suspect within the archaic and paternalistic medical paradigm a non-pathologising psychiatrist runs the risk of being perceived as a pseudo-psychiatrist. Maybe that’s the core of the problem here.

I would suggest that McGilchrist is projecting his W.E.I.R.D. neuronormative psychiatric “pseudo-philosophical thought disorder” onto neurodivergent people. The neurodiversity paradigm is not mentioned once in 3,000 pages, nor the existence of Autistic culture. Neurodivergent people are presented as aberrations from a “normality” that reflects his own cultural bias.

This urgently needs to change. This is why I have written a book about the essential role of neurodivergent people in human cultural evolution over the last 300,000 years, and about the future of Autistic and neurodiversity friendly forms of collaboration.

Another Autist quoting this book! And Tony Attwood. For my diagnosis with his mob at Mind’s and Hearts in Qld, I received an over 3 year sentence of trauma recovery when Michelle Garnett dismissed the original trauma evoked by the young psychologist who diagnosed me. I hasten to add I wasn’t charged for the induced trauma, just the Autism diagnosis. That was 2018 when I would have thought psychologists would be familiar with and compassionate with clients revealing a history of domestic and family violence. I was wrong.

Entire books could be written about the trauma induced by the so-called diagnostic process and by the pathologising language that forms the backbone of the DSM and the autism industrial complex.

I’m old enough to remember (nearly two decades ago now) when Autistics used to admire Tony Attwood… The honeymoon ended quickly — and very badly. Attwood needs to get it through his head that our divorce is final.

Twenty years ago Tony Attwood took initial steps towards depathologising Autistic people. Since then his work has shifted to a much more commercial focus. He is more focused on selling to parents than on helping Autists, and he regularly makes jokes at the expense of Autistic people. The language quoted above is in line with his style of joking and his way of appealing to parents and their “challenges”. I have never heard him apologise or take on board feedback from the Autistic community.

I’m an #ActuallyAutistic anthropologist who writes about challenging hegemony through writing an anthropology without positivistic conclusions- specifically dealing with embodiment in the world. Can’t believe this was written in 2021 and that we’re still being pathologized.

Openly Autistic culture

Since formal #ActuallyAutistic diagnosis / validation earlier this week, I’ve been having crazy rates of insight… how it’s not being broken but a different way of being. Such an immense relief. Thanks to everyone who sent this absolutely through the roof.

It’s always wonderful if someone did not have a pathologising and/or traumatic diagnostic experience. There is still a long way to go until positive experiences and especially adequately long-term supportive environments post-identification / diagnosis become the norm. The more visible the Autistic community, the easier it is to offer peer support.

The communal definition of autism is a living document that is maintained by the Autistic community. The current version represents a big step forward over the pathologising labels and descriptions that have been handed down to us from psychiatrists and psychologists with a full-blown god complex. But there is always room for further evolving our thinking and the foundations of Autistic culture.

Tania Melnyczuk proposes and asks:

Autism is a neurodevelopmental disability—in other words, it’s about how our nervous system has developed from before we were born. We are different from most people in how we take in and process information, and how we think and move. This also affects how and what we communicate. Autism is an umbrella term: there’s a lot of variety among us. Most of us struggle if the environment isn’t ideal for our sensory and other information-processing differences. We generally have strong pattern-recognition, and some of us are good systems thinkers. Although many autistic people cannot rely on speech to communicate, most nonspeaking autists do not have an intellectual disability.

Now how do we make this short?

She also identified a gap relating to Autistic ways of movement:

The other is the introduction of the movement perspective, considering that this is a defining feature of autism for many nonspeaking autistic people. And there’s also an autistic micromovement signature which, with the right gadgets, could definitively give a YES or NO answer as to whether someone is autistic.

These are all very relevant points. It is worthwhile to reflect on these observations and think about how to best integrate them into the text. Tania and many others including myself also have concerns about the abstract singular term “autism”:

The one [change] is the possible introduction of the plural form, autisms.

I have increasingly been thinking about the very basic terminology. Many of us remember the discussions around the term “Aspergers” a few years ago. It is a positive development that this particular label is on the way out, but we still have “the autism spectrum” and “autism”, and I am not comfortable with either. A growing number of Autistic people are starting to recognise “being on the Spectrum” as being problematic. That’s encouraging. I banned that phrase from my active vocabulary a few years ago.

However, the number of people who have an issue with the term “autism” is (possibly?) still limited, even though most Autistic people do object to the person-first language of “with autism”. We are still left with an “autism” diagnosis, and quite a few also use phases like “my autism”. And there are probably more constellations with “autism” that are not top of mind for me because I don’t use them.

The use of plural (autisms) is a step in the right direction, but I am wondering how far we can make the entire abstract noun disappear by relying on the following words:

  • Autistic
  • Autistic person / Autist
  • Autistic ways/patterns of being/communication/collaboration/movement
  • Autistic community/communities
  • Autistic culture
  • etc.

Maybe we can also shift from “diagnosis” to the “identification of autistic ways of being”? I will review the current communal definition to see whether this is enough to make Autistic people and Autistic culture more visible and to make “autism” disappear.

The Communal Definition of Autism is communal. It could become the “definition of Autistic ways of being”. What do you think? What are your ideas?

Please send in ➜ your ideas for improvement and feedback. Please also see some of the earlier considerations and discussions that have shaped the current version.

Update: many thanks for the wonderfully encouraging and constructive feedback some of you have submitted. So far all suggestions are compatible with the intent of the outlined terminological changes, including the change in title, and the removal of the abstract noun “autism”. Some suggestions have also added precision by qualifying some statements in the definition. One person suggested we should consistently capitalise Autistic when discussing Autistic culture, in analogy to Deaf culture. I know that some of us are already doing this, and I would recommend that change.

I have integrated the changes into a draft communal definition of Autistic ways of being for the community to review. All changes are highlighted in orange, so you can see at a glance everything that has changed. Please add your feedback to that page, or use the embedded feedback form to communicate further ideas or to discuss draft ideas in private. If you endorse the suggested changes, please also comment or like the page, so that we can gauge the support.

I propose to leave the draft marked-up page in place throughout the month of January, so that we all have time to reflect further and tweak the new text as needed. In February we can then replace the old communal definition with the new one and mark up the old version as “superseded”, with a pointer to the new one.

Co-creation of openly Autistic culture

In co-creating Autistic culture we can put the Design Justice Network principles to good use. It is worthwhile to reflect how deeply entangled behaviourism is with European colonialism. In Aotearoa the European missionaries were surprised by the freedoms to explore and pursue intrinsic motivations enjoyed by Māori children. Most of this has been replaced by colonialism, Western “education” systems, the ideology of the invisible hand, intergenerational trauma, and institutionalised racism. In my work in the healthcare sector I also rely on the language of evolutionary design and related Māori design principles. Before European colonists arrived in Aotearoa, pathologising labels for neurodivergent people were unknown.

Other Autists are embarking on compatible paths:

Autistic authors co-create Autistic culture one publication at a time. A couple of days ago was the launch of my new book ‘The Beauty of Collaboration at Human Scale’.

All books featured by the Autistic Collaboration Trust are written by members members of the Autistic community and are considered to be contributions to Autistic culture. You are invited to read, contribute further books and recommendations, and offer feedback from your unique repository of lived experience.

I will never forget a very concerning incident of systemic marginalisation of Autistic people 15 years ago, within an organisation that was one of my clients. An Autistic person within my team was fired on the spot, without consulting with me or anyone else, without any explanation given, and escorted out of the building by two security guards – simply for being vocal about things that were in bad shape, and for moving and interacting in a uniquely Autistic way.

Neither autism awareness nor autism acceptance are adequate for preventing such incidents and other forms of discrimination and neglect from being considered acceptable. It is time for Autistic people to be appreciated as an essential part of the diversity of the human species. In March next year, as part of Weird Pride Day and Neurodiversity Celebration Week we are going to offer education in the neurodiversity paradigm, the neurodiversity movement, and Autistic culture.

We are going to advocate for openly Autistic culture in schools, universities, and in public libraries, amongst staff and students. In this context privileged Autistic people who can afford to be open about their identity have key roles to play to progress the neurodiversity movement.

Onwards: International panels on banning all forms of conversion therapies

Click your language to read:

English / Français / Español / Deutsch / 中文 / 日本語 / 한국어 / עברית / فارسی / العربية / русский / Azərbaycanca / Català / Česky / Eesti / Eλληνικά / Filipino / Indonesian / Íslenska / Italiano / Kurdí / Magyar / Nederlands / Polski / Português / Slovene / Suomi / Türkçe / Bosanski-Hrvatski-Srpski

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.

We are building on the results achieved to date, focusing on the human rights violations in countries that have ratified the Convention on the Rights of Persons with Disabilities (CRPD). In September 2021 our submission to the Conversion Practices Prohibition Legislation Bill in Aotearoa New Zealand was well received:

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.

Further questions to be explored in more detail:

  1. An overview of the PAABA, the ABAI’s neocolonialist venture into Africa.
  2. How do we run a parallel campaign to get people to voluntarily stop doing ABA before the ban happens?
  3. How do we engage respectfully with survivors, to not retraumatise them? Considering this is likely to be a harrowing period, but their stories count?

Panel 5 – December 2021

Date and time: 16 December 2021, 6 pm UTC
(1 pm EST / 10 am PST / 8 pm SAST / 9 pm EAT, 7 am NZDT)

Panellists:

  1. Tania Melnyczuk, Founder, Autistic Strategies Network, South Africa
  2. Karen Muriuki, Autistic Self Advocate, founder of Kenyans Living with Autism and a Bridge Kenya CRPD-SDGs fellow, Kenya
  3. Fiona Clarke, Autism consultant and disability activist, United Kingdom
  4. Kim Crawley, Cybersecurity researcher and writer, Hack The Box, Canada

Facilitator: Jorn Bettin, activist, Autistic Collaboration Trust, and knowledge archaeologist, S23M, Aotearoa

➜ Transcript

Questions discussed:

  1. Which national campaigns against ABA have already explicitly referenced specific clauses within the CRPD, and linked them to proposals for implementation within local legal and regulatory frameworks?
  2. How do we approach our governments? What are the correct steps? To what extent do we need to consider local variations in the approach to be successful?
  3. Who are our potential allies and what strategies we can use to engage them?

Panel 6 – December 2021

Date and time: 17 December 2021, 7 pm UTC
(2 pm EST / 11 am PST / 9 pm SAST / 10 pm EAT, 8 am NZDT)

Panellists:

  1. Tania Melnyczuk, Founder, Autistic Strategies Network, South Africa
  2. Quinn Dexter, Âû advocate, writer & YouTuber, Autistamatic, United Kingdom
  3. Seth Benjamin, Animator, Artist, Writer, United Kingdom
  4. Kim Crawley, Cybersecurity researcher and writer, Hack The Box, Canada

Facilitator: Jorn Bettin, activist, Autistic Collaboration Trust, and knowledge archaeologist, S23M, Aotearoa

Questions discussed:

  1. What role do you think ableism plays in the world of ABA and how does it influence our approach to a ban? Could ABA exist without ableism?
  2. Who are our potential allies and what strategies we can use to engage them?
  3. How do we engage respectfully with survivors, to not retraumatise them? Considering this is likely to be a harrowing period, but their stories count?

Recordings from earlier discussions

Overview of panel discussions to date and links to recordings:

  1. Alice Richardson, Jasper Poole, Naphaphol Suwanacheep
    ➜ transcript, 11 June 2021
  2. A.W. Peet , Kim Crawley, Star Ford, Tania MeInyczuk
    ➜ transcript, 9 June 2021
  3. Allison Hoffmann, Jake Pyne, Terra Vance, Sarah Selvaggi Hernandez
    ➜ transcript, 27 May 2021
  4. Alice Richardson, Kim Crawley, Laura Dilley, Pip Carroll, Rory
    ➜ transcript, 20 May 2021

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.

Understanding human collective behaviour

Individually and collectively neuronormative humans are prone to developing a bias towards thinking they understand more than they actually do (Kruger and Dunning 1999), certainly in the context of modern industrialised societies that are built on the myth of meritocracy. The extreme global loss of biodiversity and the climate crisis, both triggered by collective human activity in the industrial era, confront us with the cognitive limits that are induced by the industrialised social operating models that have become the global norm over the last 50 years.

Autistic world views are influenced by an absence or a significantly reduced level of subconscious filtering of social information and by a heightened level of conscious processing of raw information signals from the environment. This raises the interesting question of what cultural shifts might improve our collective chances of dealing effectively with human-created existential crises.

In order to better understand not only current human collective behaviour, but also the collective potential of human imagination, and how this potential can either be dampened or amplified depending on the cultural norms and available thinking tools within specific social operating models, we need to study human collective behaviour from a transdisciplinary perspective, across the last 300,000 years, and across societies on all continents.

If I would have had access to some magical time machine for procuring books when I was a teenager, it would have spared me many surprises, and I might have been able to avoid a few detours on my journey through life to date. In the absence of such magic, I found myself having to write one of the books listed below.

The Dawn of Everything

David Graeber and David Wengrow, 2021

  • Perspective: anthropology and archaeology
  • Topic: examples of human cultural flexibility
  • Why it matters: re-expanding the sphere of discourse and regaining confidence in the possibilities of human imagination

The more we examine the anthropological and archaeological evidence, the more it becomes apparent that not only did hunter gatherers and early societies adapt to a diverse range of ecosystems, they also experimented with ‘a carnival parade of political forms’.

The cultivation of plants was often practised alongside hunting and gathering, the emergence of the first cities with several ten thousand inhabitants did not necessarily coincide with the establishment of rigid hierarchies of control, early farmers co-ordinated complex irrigation systems without any need for bureaucratic oversight, and oppressive societies often existed alongside societies that explicitly rejected all forms of permanent social power structures.

David Graeber and David Wengrow elaborate how schismogenesis, the process of differentiation in cultural norms resulting from cumulative interaction between societies, has shaped cultural developments in many geographies over hundreds and thousands of years.

They also point out that neurodivergent people have always contributed to human culture in unique ways. In healthy societies contributions from neurodivergent people were highly appreciated, in particular in times of crisis. When great calamities or unprecedented events occurred – a plague, a foreign invasion – a person who might otherwise have spent their life as something analogous to the village idiot would suddenly be found to have remarkable powers of foresight and persuasion; even to be capable of inspiring new social movements.

The Collapse of Complex Societies

Joseph Tainter, 1988

  • Perspective: history and anthropology
  • Topic: limits of hierarchical social operating models
  • Why it matters: understanding anti-patterns and traps of social operating models

The reason why complex societies disintegrate is of vital importance to every member of one, and today that includes the entire world population. Contemporary thinkers foresee collapse from such catastrophes as nuclear war, resource depletion, economic decline, ecological crises, or sociopolitical disintegration.

Human societies and political organisations, like all living systems, are maintained by a continuous flow of energy. From the simplest familial unit to the most complex regional hierarchy, the institutions and patterned interactions that comprise a human society are dependent on energy. Not only is energy flow required to maintain a sociopolitical system, but the amount of energy must be sufficient for the complexity of that system.

The declining marginal returns of hierarchical organisation and complex bureaucracies ultimately lead to social tensions that make it harder and harder to maintain established institutions, and the dampening of feedback loops in hierarchical organisations ultimately reduce collective intelligence to a point where collapse becomes inevitable.

Collapse is not a fall to some primordial chaos, but a return to the normal human condition of lower complexity. To a population that is receiving little return on the cost of supporting complexity, the loss of that complexity brings economic, and perhaps administrative, gains. It may only be among those members of a society who have neither the opportunity nor the ability to produce primary food resources that the collapse of administrative hierarchies is a clear disaster. Collapse then is not intrinsically a catastrophe. It is a rational, economising process that may well benefit much of the population.

A Field Guide to Earthlings

Star Ford, 2010

  • Perspective: autistic culture
  • Topic: patterns of neuronormative behaviour in industrialised societies
  • Why it matters: understanding the cognitive blind spots of neuronormative people in W.E.I.R.D. cultures

Autists carry around large numbers of open questions and only hold a relatively small number of firm beliefs – those that are backed up by personal experience or by scientific evidence. In contrast, non-autistic people are much less comfortable carrying around open questions over long periods of time and tend to hold many socially constructed beliefs, i.e. opinions that are not backed up by personal experience or by scientific evidence. Social norms in modern industrialised societies have highly concerning effects on non-autistic people.

The manipulation of words becomes like an art form, instead of words being used to mean something specific. Neuronormative people can have trouble seeing or hearing things that they don’t already expect to see or hear, so new ideas can “fall on deaf ears.” It is not necessarily the case that they dislike new ideas; they might simply be unable to detect them because of symbolic filtering. The neuronormative mind is often not good at distinguishing appearances from the facts that underlie the appearances. To appear to do good is doing good. To claim that one is supportive is the same as being supportive. This is what sales people do a lot. The boundary to lying is fluid.

Minimising misunderstandings involves significant work on both sides and hinges on mutual respect and patience. Autistic people don’t intuitively engage in the verbal and non-verbal pretend play of understanding everything that is being said, which is the neuronormative norm in many industrialised societies.

The Beauty of Collaboration at Human Scale

Jorn Bettin, 2021

Perspective: neurodiversity movement and autistic culture

Topic: the role of neurodivergent people in cultural evolution

Why it matters: maximising the potential of human imagination within the constraints imposed by human cognitive limits

This book is about collaboration, about scale, and about humans, about beauty, and about limits. It has been written from my perspective as an autistic anthropologist by birth and a knowledge archaeologist by autodidactic training. I attempt to address the challenges of ethics and collective intelligence in an era that 21st century geologists refer to as the Anthropocene.

Through the lenses of evolutionary biology and cultural evolution, small groups of 20 to 100 people are the primary organisms within human society. The implications for our civilisation are profound. Humanity is experiencing a phase transition that is catalysed by a combination of new communication technologies, toxic levels of social inequalities, and existential crises. It is time to reflect critically on the human evolutionary journey and on the possibilities and limitations of human agency.

I would like to equip communities and individuals with conceptual tools to create good companies that are capable of pumping value from a dying ideological system into an emerging world. Regardless of what route we choose, on this planet no one is in control. The force of life is distributed and decentralised, and it might be a good idea to organise and collaborate accordingly.

Becoming conscious of human cognitive limits and recognising that these limits are just as real, immutable, and relevant for our survival as the laws of physics may allow us to avoid the fate of earlier civilisations, and to embark on a path of radical energy descent.

Inflamed

Rupa Marya and Raj Patel, 2021

Perspective: medicine and colonialised societies

Topic: the links between health and structural injustices

Why it matters: systemic violence of industrialised colonialism affects human and non-human health at all levels of scale – right through to the microbiomes within our bodies

When a group of physicians was polled, only 36 percent asked for an agenda from a patient, and the median time before interrupting the patient was only eleven seconds. Listening requires humility, to acknowledge a state of not knowing. To listen is to inhale and create the delicate space for stories. Learning to listen must be the work of settlers on colonized land, of modern societies that treat the Earth as a thing to be exploited, and of health care workers, as we increasingly encounter existential threats from forest fires, pandemics, catastrophic floods, and global warming—all signs that we are critically out of balance.

If the imaginative work of creating new worlds feels difficult and overwhelming to you, that’s because it is. The world we live in makes such ideas feel wrong, abnormal, deviant, and sick. Colonialism wants you to feel powerless and alone. Systems that position humans as supreme over the entire web of life, settler over Indigenous, a singular religion over all other worldviews, male over female and nonbinary understandings of gender, white over every other shade of skin—these must be dismantled and composted.

The problem is when inclusion becomes enclosure—when the radically transformative projects, theories, and futures led by Indigenous and poor people are sterilized by neoliberalism, and when the language and other signifiers of revolution are co-opted. For those living in settler societies, the work of being in solidarity specifically with Indigenous-led movements is particularly critical. Forging new forms of solidarity is not easy. It requires abandoning colonial ties and creating new relations with other fugitives. Reconnecting relations that colonialism sundered is simultaneously a personal and political project. Colonialism reproduces itself through a hegemony that has been widely internalized.

Carers have been doing the work of decolonization around the world. In the nursing profession, there is a growing debate about the need to recognize the damage that settler colonialism has caused. Concrete actions of solidarity, from organizational critique of the health care system to radical listening for new knowledge, are both new to the field of nursing, and ancient wisdom. In Maori, it’s “Ka mua, Ka muri”; in Hawai’i, it’s “Ka Wā Ma Mua, Ka Wā Ma Hope.” In English, it’s “walking backwards into the future.”

Imagine

Imagine what would become possible if the outlined scope would form the backbone of the curriculum in communal education / exploration systems that prepare our children for nurturing and maintaining ecologies of care. The bigger challenge ahead lies in paving the path – finding ways of healing all the traumatised “adults” who have been stripped of their imagination.

The continuously shifting justifications for pathologising non-conformists

Recently I have come across a treasure trove of interesting references on the continuously shifting justifications for pathologising autistic people and all those who are not culturally well-adjusted to “civilisation”. I’m bound to weave in a few references into the book on collaboration at human scale before publication. Following the trail of where Hans Asperger picked up the term “autism” I ended up reading a fascinating 1919 German book by Eugen Bleuler titled ‘Autistic and undisciplined thinking in medicine, and how to overcome it’. The content is not at all what you would think. The sands of pathologisation have shifted significantly. Unsurprisingly there are not many references to Eugen Bleuler’s work in the English medical literature. His original work is not even available in English. But I found a few articles and abstracts. The essence is distilled below. 

Here is an extract from a 2013 article by Bonnie Evans titled How autism became autism, on the continuously shifting justifications for pathologising autistic people and all those who are not culturally well-adjusted to “civilisation”:

The concept of autism was coined in 1911 by the German psychiatrist Eugen Bleuler to describe a symptom of the most severe cases of schizophrenia, a concept he had also created. According to Bleuler, autistic thinking was characterized by infantile wishes to avoid unsatisfying realities and replace them with fantasies and hallucinations. ‘Autism’ defined the subject’s symbolic ‘inner life’ and was not readily accessible to observers (Bleuler, 1950[1911]: 63). Psychologists, psychoanalysts and psychiatrists in Britain used the word autism with this meaning throughout the 1920s and up until to the 1950s (e.g. Piaget, 1923). However, in the 1960s, many British child psychologists challenged the contentions about infantile thought assumed by Bleuler and created new methods to validate child psychology as a science, in particular epidemiological studies. ‘Autism’ was then completely reformulated as a new descriptive category to serve the needs of this new model of child development. From the mid-1960s onwards, child psychologists used the word ‘autism’ to describe the exact opposite of what it had meant up until that time. Whereas ‘autism’ in the 1950s referred to excessive hallucinations and fantasy in infants, ‘autism’ in the 1970s referred to a complete lack of an unconscious symbolic life. For example, Michael Rutter, a leading child-psychiatric researcher from the UK’s Maudsley Hospital who conducted the first-ever genetic study of autism, claimed in 1972 that ‘the autistic child has a deficiency of fantasy rather than an excess’ (Rutter, 1972: 327). The meaning of the word autism was then radically reformulated from a description of someone who fantasized excessively to one who did not fantasize at all.

This article traces this radical transformation of the concept of autism in Britain, exploring the reasons behind the shift and the impact that it has had on psychological sciences relating to infants and children. It argues that the change in the meaning of autism was part of a more general shift in Anglo-American psychiatric reasoning which sought to understand psychological problems through epidemiological studies rather than individual cases. The introduction of psychiatric classificatory models has previously been explored in relation to the Diagnostic and Statistical Manual (DSM), in particular the introduction of DSM-III in 1980 (Grob, 1991; Mayes and Horowitz, 2005; Wilson, 1993). However, few people have explored this in relation to child psychology and psychiatry. This article examines the way that epidemiological methods shifted and morphed central concepts in these fields, in particular the concept of autism. It argues that the diagnostic practices required of psychiatric epidemiology in the 1960s continue to influence contemporary theories and descriptions of autism in Britain.

This is about as much as is available about Eugen Bleuler’s work in English. To really appreciate his perspective and his use of the term “autistic”, it is necessary to be aware of his in-depth critical analysis of the foundations of the medical profession. From an English abstract of Bleuler’s book on Autistic and undisciplined thinking in medicine, and how to overcome it’:

The famous Swiss psychiatrist, Eugen Bleuler (figure 1), is well known for his seminal work on psychosis, for having coined the term ‘schizophrenia’ and for his disputes about psychoanalysis with Sigmund Freud. Less known is the fact that Bleuler was a harsh critic of many of the methods and practices of his colleagues. In a small book, first issued in 1919, when he was 61 years old, he castigated many of his contemporaries for sloppy thinking and poor methods, both in medical practice and research.

The title of the book sounds too good in German not to quote it fully: Das Autistisch-Undisziplinierte Denken in der Medizin und seine Überwindung. This provocative title can be translated as Autistic and undisciplined thinking in medicine, and how to overcome it. In the first chapter, Bleuler asserts that many of the cognitive habits of doctors can be compared with what he observed in his patients: a magical way of thinking, more aimed at the fulfilment of wishes and hopes than reflecting and analysing reality: hence ‘autistic thinking’. According to Bleuler, this pathological cognitive style is paramount in medicine, far more than in other sciences. He explains this by the complexity and obscurity of most medical knowledge, in combination with the need to defy sickness and death. The combination of our limited knowledge and the need to act causes what he calls ‘Primitivreaktionen’. These are a form of cognitive reflexes, based on tradition and habits, which create the illusion in both doctors and their patients that something useful is done.

Bleuler was of the opinion that autistic thinking pervades all areas of medicine, but especially prevention and treatment. He gives numerous examples of popular treatments in his time that were ineffective or even dangerous, such as electrotherapy, hydrotherapy and many dietary remedies. One only has to visit one of the historic European spas to get an impression of the popularity of water treatments around the fin de siècle and later. Bleuler observed that the efficacy of these treatments is unproven and probably non-existent. It would often be better to do nothing at all, instead of prescribing worthless remedies. Moreover, many ailments recover spontaneously. Even a seemingly harmless treatment, which many might now accept for its placebo effect, can have adverse effects, according to Bleuler: it may reinforce the conviction of the patient that he is really ill and even impede recovery. To give his policy of doing nothing the same dignity as the popular remedies with their ostentatious names, he—jokingly—proposes the term ‘udenotherapy’, which literally means ‘non-treatment’ (from the Greek ‘ouden’, nothing).

In the realm of pharmacological treatments the situation was not much better. Bleuler had little confidence in the methods used to develop drugs, which he summarised as follows: when a new substance is believed to have therapeutic properties, it is tested on a couple of animals or humans, and “in the great majority of these experiments nobody is killed”. Usually the drug is targeted at a condition with a benign natural course, or one that is easily influenced by suggestion. The doctor who discovered the drug believes in its beneficial effects, which strongly biases his observations. The outcomes of therapeutic experiments are usually caused by a play of chance, and only the favourable results are published, not the negative ones. Controlled experiments are rarely done and, if they are, the results are unreliable because the control patients differ from the treated ones. The next step is to print a glamorous brochure and offer free samples of the drug, so doctors can see for themselves how well it works in practice.

After his analysis of the dismal state of affairs in medical research and practice, Bleuler proposes a number of measures to improve the quality of medical research, which he called Forderungen für die Zukunft (requirements for the future). Some of these ideas had already been developed long before, by the French pioneers Louis and Gavarret, but he was not aware of their publications. For Gavarret, this was not unusual since even the renowned British statistician Greenwood (1880–1949) did not know the work of Gavarret. Bleulers’ proposals show some of his surprisingly modern insights. First he demanded that, in order to examine the efficacy of any treatment, it is essential to compare the results in two groups of patients who are as similar as possible in all aspects except the treatment. To achieve this he proposed alternating assignment of patients to treatment A or treatment B (or nothing). He did not come across the idea of randomisation, which had to wait for Ronald A Fisher, who described it in 1935 in his legendary book The design of experiments. Bleuler stresses the need to examine sufficiently large groups to avoid chance results. Also, he recommended that “for almost all conclusions the degree of their probability should be determined, if possible expressed in numbers”. He regarded so called negative results as at least as important as positive findings: “for science, there are no negative results”. They should be published in a registry, so that everyone can have access to all data. This should also help to counteract the tendency to try and find positive results at all cost, which he regarded as “a practice that results in much pointless labour and many false results”. This issue has later been elaborated by John Ioannidis in his influential paper ‘Why most published research findings are false’ (2005).

Bleuler aimed his criticism not only at the poor state of medical research and practice, he also had recommendations for journal editors and medical teachers. Medical publications should be concise, with a summary and a numbered list of references. Now commonplace, but in 1919 revolutionary, and much needed. As to medical education, he advised that medical students should receive at least some instruction in medical psychology and ethics. He strongly condemned the practice of medical professors lecturing their students ad nauseam without getting any kind of feedback (“a completely perfidious, autistic institution”). This was truly revolutionary in the authoritarian teaching culture at that time.

This brief summary of Bleulers’ insights shows that he was far ahead of many of his contemporaries. His proposals to improve medical research and practice laid out a programme that was only realised slowly during the decades after the Second World War. Many pioneers after him, such as Alvan Feinstein, David Sackett and Archie Cochrane, came to similar conclusions, and formulated the programme which we now call ‘evidence based medicine’, a term coined by Gordon Gyatt somewhere in 1990. Re-reading of Bleulers’ remarkable book shows his farsighted analysis of the many shortcomings of medical science and practice in 1919, and the effective remedies he proposed. His name should be enlisted in the hall of fame as one of the true pioneers of evidence based medicine.

The scientific basis of the medical profession is mostly limited to correlations. Often causal understanding is lacking due to the quasi-infinite constellations and psychosocial factors that can cause human dis-ease. Even Bleuler, with his astute observations on the medical profession and his scathing critique of big pharma more than 100 years ago, was a product of his time. Like most of his contemporaries he was an advocate of eugenics (sterilisation) when it came to “mentally diseased” people.

The introduction of “evidence based” approaches was very much a double-edged sword. Most people confuse being able to mechanically use an evidence based model with understanding the model, all the underlying assumptions, and the limitations, resulting in the pseudo-science of behaviourism and in sensationalist “autism research” that only serves the commercial interests of the autism industrial complex.

Like copy and paste coders in software, social scientists and medical researchers work with implicit assumptions all the time, without necessarily worrying much about it. The muddling, i.e. the use of models without explanatory powers, has only gotten worse in the age of artificially intelligent systems, where every man, women and dog is tinkering with digital correlation maps, believing that this will result in exponential post-human “progress”.

Anyone who suspects being autistic is well advised to learn about autistic culture and autistic ways of being from autistic people. We really don’t need any gatekeepers, and even less people who attempt to “help” us by “normalising” us.

Good company in an era of peak cognitive dissonance

I prefer to co-create good company rather than business – to focus on the people and things we care about rather than what is simply keeping us busy. Often this is easier said than done, as we live in an era of extreme cognitive dissonance.

This article describes common symptoms of collective cognitive dissonance in industrialised societies, and it points towards tools for reducing cognitive dissonance. From an autistic perspective the dissonance manifests not in terms of contradictory beliefs, but in terms of complete alienation from the mainstream culture in industrialised societies. Most of the so-called foundations of our civilisation amount to a delusional level of wishful thinking. Our society is locked into paradigmatic inertia by fear and busyness.

Anthropocentrism

A few years ago I facilitated a workshop on Anthropocentrism. Participants discussed the way we perceive and experience the civilised world  in comparison to the way in which pre-historic humans perceived the world. Today, with the help of modern communication technologies, the world we experience is more and more social and less and less non-human. Unless we scale back our use of communication technologies or we develop powerful technologies for perceiving the state of the non-human environment in ways that capture our attention as much as social signals, we become increasingly numb to the effect that we are collectively having on the biosphere.

Anthropocentrism is currently shaping our world view, and thereby leading us further and further into a world in which human ignorance, human errors, and human cognitive limits are capable of not only triggering the extinction of the human species, but also into a world where anything that is non-human or not human made is perceived either as worthless or as a threat.

The wishful thinking of enlightened or green capitalism

Those who put their hopes on enlightened or green forms of capitalism fail to understand basic principles of biological and cultural co-evolution. Biological, neurological, and cultural diversity are the evolutionary forces that have enabled humans to adapt to and thrive within dynamic environments – better than many other species. Enlightened capitalists easily underestimate the human capacity for altruism, intrinsic motivation, and mutual aid, and at the same time they overestimate the human cognitive capacity to understand and control complex dynamic systems. Human social, ecological, and individual behaviour is shaped to a large extent by internalised local cultural norms. There is nothing that somehow makes internalised norms relating to capitalism superior to other possible local arrangements.

The belief in the magic of the invisible hand is an ideology that confuses the energy and resources spent on direct competition with a positive evolutionary force. As a result, all forms of capitalism optimise for maximum busyness, i.e. maximum (mis)use of time, energy and resources. The fiction of homo economicus manifests itself in the belief in the need for external incentives and coercion.

Humans have a limited capacity for attention. Shifting the focus of busyness growth into the digital and social realm only further alienates us from our ecological context, and is not a viable strategy for perpetuating the delusion of infinite growth on a finite planet. Furthermore, the competitive ideology that underpins the growth imperative has led to a devaluation of all forms of physical labour and care work that does not or that should not involve social competition.

The mutual distrust that is created via a competitive labour markets reduces the human capacity for communication and shared understanding into a capacity for deception and direct social competition, distracting from the goal of delivering services and outcomes that are beneficial for wider society.

An ideological bias towards market based “solutions” obscures institutional problems. 250 years of industrialised civilisation have impaired our ability to understand and navigate the world in terms of trusted relationships. The climate of fear in an atomised society has shrunk the sphere of discourse to the point where the existence of most institutions is no longer questioned. All potential institutional problems are assumed to be addressable by adding further complexity to established institutions or by complementing established institutions with further institutions.

Myopic focus on individual mental health

In industrialised societies the topic of mental health is conceptualised as a concern pertaining to individuals, and accordingly, treatment is focused on identifiable symptoms at the individual level, and this in turn is reflected in the diagnostic and treatment manuals used by psychiatrists and psychologists. Our society pretends that relational problems between people can be broken down into individualised components of mental and physical health, and that these can be treated separately.

Furthermore mainstream healthcare systems treat social determinants (poverty, quality of housing, access to healthy food, local levels of inequality, etc.) as a secondary concern, resulting in a never-ending stream of mental health problems.

By design the established reactive and social context-blind paradigm of healthcare delivery creates incentives for maximising the funding that flows into the treatment of symptoms, and it minimises the funding available for a proactive and social context-aware approach. Also by design, systemic problems are delegated to the realm of politics. The lack of a holistic transdisciplinary approach creates an artificial barrier that isolates political discourse from the potential mental health impacts of policy decisions.

The topic of mental health is further complicated by a profound lack of understanding of neurodiversity across all the many disciplinary silos within the healthcare system:

  • Often mental health problems are not understood as inevitable downstream effects of a society that systematically discriminates against autistic and otherwise neurodivergent people.
  • Many physical health problems are not identified as the stress responses of socially marginalised people, a problem that is compounded for hyper-sensitive autistic people who are marginalised along other dimensions as well – ethnicity, lack of access to trusted peers, lack of access to autistic healthcare professionals, etc.
  • The level of stigma associated with neurodivergence (in particular open displays of autistic culture) within the healthcare sector not only perpetuates the harm done by the pathology paradigm to patients, it also means that virtually all autistic (and many otherwise neurodivergent) healthcare professionals remain undercover, and are unable to assist neurodivergent patients and peers who are being discriminated against.
  • Furthermore, the manifestation of neurodivergence is dynamic, and the stress responses to sensory or social overload may change over time, in ways that are individually unique.
  • Post viral syndromes represent forms of neurodivergence that so far have received little attention within the neurodiversity movement. The COVID-19 pandemic has started to bring this topic into focus. In terms of the many potential triggers of sensory overload, post viral syndromes overlap with common autistic hypersensitivities.

Culturally prescribed cognitive dissonance

As I have described in-depth in earlier articles, W.E.I.R.D. societies systematically pathologise all those who are not fully “functional” and “culturally well adjusted” machines within the factory model of society.

The 10 W.E.I.R.D. axioms of the pathology paradigm:

  1. The W.E.I.R.D. social game is the pinnacle of “civilisation” achieved so far.
  2. The arrow of “progress” is advanced by playing the social game.
  3. The “purpose” of society is to perpetuate the social game.
  4. Every human who knows how and is willing to play the W.E.I.R.D. social game is equipped for a happy and “successful” life.
  5. Addressing individual “functional deficits” in relation to W.E.I.R.D. norms are the key to a healthy society.
  6. Non-W.E.I.R.D.-compliant notions of a fulfilled life are irrelevant and represent a threat to the “normal functioning” of society.
  7. Individuals with “functional deficits” must be grateful for all services and assistance that is made available to improve their level of “functioning”.
  8. Individuals with “spiky skills profiles” must be grateful for all “opportunities” to contribute to the social game.
  9. Individuals with “functional deficits”, and especially those who question the value of the social game, clearly “don’t understand the bigger picture”, can’t possibly have anything of value to contribute to society.
  10. The W.E.I.R.D. social game reflects the axioms of human nature, and researchers can safely assume the W.E.I.R.D. axioms to be true when designing research experiments, when conducting experiments, when designing and running computer simulations of collective human social behaviour, and when interpreting research results.

Cultural deficits

A society that systematically desensitises all its people to social inequality and that instead celebrates individual success based on material wealth and social vanity metrics creates a sick social environment that disables society as a whole.

The extreme harm caused is visible to anyone who is able to acknowledge the level of cognitive dissonance that constitutes the foundation of industrialised civilisation:

  • Our inability to adapt to environmental changes in a timely manner
  • Our inability to extend trust to others or to other groups
  • Our inability to understand each other
  • Our inability to meet basic human social needs

Cultural evolution

The following presentation from the ISC 2021 Summer School on Cognitive Challenges of Climate Change by William Rees, a co-inventor of the ecological footprint concept, offers a good summary of the current human cultural predicament in terms of where we are, but without any hint of how we might be able to to overcome paradigmatic inertia.

Other presentations from the same series offer a few clues, in terms of starting to do less by consciously reducing the complexity of design in our physical and social environments, via coordinated activism, and by empowering locally communities to define locally relevant multi-dimensional metrics of wellbeing.

Given the cognitive dissonance that characterises normality in industrialised societies, it is not surprising that none of these otherwise excellent presentations on cognitive challenges related to climate change examine the role of neurodiversity and autistic cognition in cultural evolution.

Autistic people don’t play social games, instead we actively resist them. We are primarily guided by our moral principles and are less prone to being corrupted by monetary rewards. And for this we are pathologised and vilified. It is not an accident that Greta Thunberg is autistic. A growing literature suggests that autists display reduced susceptibility to cognitive biases and exhibit more rational and bias-free processing of information. The enhanced rationality of autistic people has valuable implications for the understanding of human rationality and for understanding the role of neurodiversity in cultural evolution.

Within the bigger picture of cultural evolution autistic traits have obvious mid and long-term benefits to society, but these benefits are associated with short-term costs for social status seeking individuals within the local social environments of autistic people.

Neurological and cultural diversity is the reservoir of imagination of the human species. In a time of existential crises the collective creative potential of neurodivergent people and marginalised cultures has become more important than ever. It is well known that all major social change originates on the margins of society. We have to realise that in our hypernormalised global consumer culture transformational change can only emanate from indigenous cultures, from marginalised and sometimes criminalised groups, and from pathologised neurodivergent people.

The implications for co-creating good company are profound. Becoming conscious of human cognitive limits and recognising that these limits are just as real, immutable, and relevant for our survival as the laws of physics may allow us to avoid the fate of earlier civilisations, and to embark on a path of radical energy descent.

In my book on the beauty of collaboration at human scale I trace the journey of cultural evolution from the origins of humans right up to the latest significant developments in the early 21st century – including the role that autistic people have played and will continue to play in this context. Regardless of what route we choose, on this planet no one is in control. The force of life is distributed and decentralised, and it might be a good idea to organise and collaborate accordingly.