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.

🧵Attempting to understand Autistic people & culture is difficult for many, because of the chasm between a) the pseudo-scientific and culturally biased behaviourist framing of autism in the DSM and b) accounts of Autistic ways of being articulated in the neurodiversity paradigm. https://t.co/z42YpWSV4q

— Jorn Bettin (@jornbettin) May 2, 2022

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

• https://psychology.org.au/getmedia/d873e0db-7490-46de-bb57-c31bb1553025/aps-code-of-ethics.pdf
• https://www.psychologyboard.gov.au/Standards-and-Guidelines/Code-of-conduct.aspx

Antidiscrimination legislation in Australia

• Attorney-General’s Department (Federal) https://www.ag.gov.au/rights-and-protections/human-rights-and-anti-discrimination/australias-anti-discrimination-law
• Australia was one of eight nations participating in the drafting and adopting the UN Universal Declaration on Human Rights in https://humanrights.gov.au/our-work/publications/australia-and-universal-declaration-human-rights
• Australia has been a party to CEDAW since 17/08/1983 https://humanrights.gov.au/our-work/sex-discrimination/publications/womens-human-rights-united-nations-convention-elimination#:~:text=The%20Convention%20on%20the%20Elimination,bill%20of%20rights’%20for%20women
• Australia signed the UN Convention on the Rights of Persons with Disabilities in July 2008 and July 2009 https://www.dss.gov.au/our-responsibilities/disability-and-carers/program-services/government-international/international-participation-in-disability-issues#:~:text=UN%20Convention%20on%20the%20Rights%20of%20Persons%20with%20Disabilities&text=On%2017%20July%202008%20and,CRPD%20and%20the%20Optional%20Protocol.
• Australia ratified the CRC in December 1990 to protect the rights of all children https://www.ohchr.org/sites/default/files/Documents/ProfessionalInterest/crc.pdf
• There is no separate international human rights agreement that deals specifically with sexual orientation or gender identity. However, all people have the same human rights regardless of their sexual orientation or gender identity. https://humanrights.gov.au/our-work/section-4-human-rights-and-discrimination-basis-sexual-orientation-or-gender-identity
• Qld Human Rights Commission https://www.qhrc.qld.gov.au/resources/legal-information/legislation#:~:text=File%2C%20905.5%20KB)-,Anti%2DDiscrimination%20Act%201991,complaint%20and%20have%20it%20resolved

United Nations

• Universal Declaration on Human Rights https://www.ohchr.org/sites/default/files/UDHR/Documents/UDHR_Translations/eng.pdf
• The Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW) was adopted in 1979 by the UN General Assembly and entered into force on 3 September 1981. https://www.ohchr.org/sites/default/files/Documents/ProfessionalInterest/cedaw.pdf
• The Convention on Rights of People with Disabilities https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf
• The Convention on the Rights of the Child https://www.ohchr.org/sites/default/files/Documents/ProfessionalInterest/crc.pdf
• The Yogyakarta Principles on the Application of International Human Rights Law in Relation to Sexual Orientation, Gender Identity, Gender Expression and Sex Characteristics to Complement  https://yogyakartaprinciples.org/

Violence Against Autistic Women and Girls and People with Disabilities

• Snapshot from Royal Commission https://disability.royalcommission.gov.au/news-and-media/media-releases/alarming-rates-family-domestic-and-sexual-violence-women-and-girls-disability-be-examined-hearing#:~:text=The%20data%20presented%20during%20this,or%201.7%20million)%20without%20disability.
• AIHW report on violence against people with a disability https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/justice-and-safety/violence-against-people-with-disability
• Violence Against Autistic Women http://www.australianautismalliance.org.au/wp-content/uploads/2017/03/Autistic-Women.pdf
• Sexual Violence against Autistic Girls https://www.spectrumnews.org/news/girls-autism-high-risk-sexual-abuse-large-study-says/
• Australian Government report on Elder Abuse https://aifs.gov.au/publications/national-elder-abuse-prevalence-study-final-report
• Code of Practice working with FV survivors https://safeandequal.org.au/working-in-family-violence/service-responses/specialist-family-violence-services/the-code-of-practice/
• Working with survivors https://www.vic.gov.au/maram-victim-survivor-practice-guides/print-all Australia’s first Royal Commission into Family Violence was completed in Victoria in 2015, three years before I stepped into your professional offices. It did make the national news. (https://www.vic.gov.au/about-royal-commission-family-violence )
• Destroy the Joint has been registering the numbers of women killed in intimate violence since 2012, six years before I stepped into your professional rooms. Those numbers continue to be made available to the media on a regular basis. (https://www.facebook.com/pages/category/Public-Service/Counting-Dead-Women-Australia-111647810713234/ ).
• The final government report into institutional child abuse was released in December 2017, the culmination of five years’ work with the ongoing investigations being reported in the media on nearly a daily basis. That was seven months before I stepped into your professional offices. (https://www.childabuseroyalcommission.gov.au/final-report)

By Jorn Bettin & Ulku Mazlum

A savage is not the one who lives in the forest, but the one who destroys the forest.

– Ulku Mazlum

The sickness of civilisation

The exploitative nature of our “civilised” cultures is top of mind for many neurodivergent people. In contrast, many neuronormative people seem to deal with the trauma via denial, resulting in profound levels of cognitive dissonance.

If we care to look with open eyes, there is no shortage of evidence that points to the social toxicity of “industrialised civilisation”:

Departure from a hunter-gatherer living is an opportune window for insight into the effects of modernization. The Ik of Uganda purportedly become more depressed upon shifting from hunter-gather to agricultural practices. After indigenous circumpolar peoples rapidly modernized, there was a rampant incidence of diabetes and suicide rates tripled within a decade.

Other lines of evidence suggest modernization is associated with depression. Indexing modernization by measures of belief in magic, hunting, gathering, agriculture, and technological complexity, a cross-cultural analysis of community women in rural Nigeria, urban Nigeria, rural Canada, and urban U.S. found the degree of modernization to correlate with a higher prevalence of depression in a dose-dependent manner.

Adoption of the American lifestyle appears to explain higher rates of depression in Mexican Americans born in the U.S. compared to Mexican immigrants.

As metropolitan China has undergone rapid cultural transformation over recent decades, the risk of suffering from depression appears to have risen dramatically: in a retrospective study, Chinese born after 1966 were calculated to be 22.4 times more likely to suffer from a depressive episode during their lifetime compared to those born earlier than 1937.

In developed countries, urban dwellers have a higher prevalence of psychiatric disorders, and specifically mood and anxiety disorders, compared to rural counterparts.

In an investigation of affective disorder prevalence among the Amish, a community that maintains a traditional agrarian culture with notable unity and social connectedness, the prevalence of MDD was found to equal that of bipolar disorder- about 1%.

The above evidence suggests higher depression prevalence and risk is associated with general aspects of modernization.

…

There seems to exist a human tendency to view current events and social trends as evidence of society’s downfall, but could it actually be happening now? Accumulating evidence indicates that the social environment in modern-industrialized countries, especially in the United States, has become increasingly competitive, threatening, and socially isolating.

Contemporary populations may now be more susceptible to depression because of greater inequality, low social support, intense individual competitiveness, and increased social failure. Onset of a major depressive episode often coincides with stressful life events.

The modern social milieu could contribute to rising rates of depression via higher frequency and/or severity of adversity. Many have posited that capitalist values have directly contributed to a decline in social well-being and an increase in psychopathology throughout the western world.

A rise in psychopathology among young adults has been attributed to a shifting cultural emphasis away from intrinsic goals, e.g. social relationships, community, and competence, to extrinsic goals, like money, status, and appearance.

Similarly, an increase in anxiety among children and college students was preceded by or coincided with measures of lower social connectedness and higher social threat.”

…

In 1985, the General Social Survey found that the mean and mode for number of confidants, people with whom one can comfortably discuss important issues, were both 3 and 3. In 2004, a repeat of the survey revealed that the mean and mode had respectively dropped to 2 and 0.

This trend toward isolation is alarming as loneliness appears to spread through social networks as a contagious process with a positive-feedback loop in which people with fewer friends become increasingly isolated and lonely over time.

Most consider the current social environment of western societies to be a gross deviation from the human EEA, as anthropologists report stronger social cohesion and a near-total absence of time spent alone in traditional foraging societies. The extensive risk for physical and mental morbidity, e.g. anxiety, inflammation-related chronic diseases, etc., from social isolation offers support for an environmental mismatch.

Brandon H Hidaka. “Depression as a disease of modernity: explanations for increasing prevalence.” J Affect Disord. PMC 2013 Nov 1.

Mental health coping mechanisms

The commercial profit oriented pharmaceutical approach in Western medicine has a lot to answer for. It is one thing to read about medical drug abuse in the abstract, it is another thing to read about the experiences people have made with addictive “medication” such as benzodiazepines, and about the questionable motives of the doctors who prescribe such drugs.

The medical model in the diagnosis of Autistic people focuses entirely on the identification and “treatment” of symptoms, and fails to acknowledge the obvious underlying causes, i.e. the sources of trauma in industrialised societies. Additionally, exclusive reliance on the medical model in the diagnosis of other forms of neurodivergence, such as bipolar disorder, obsessive compulsive disorder, etc. prevents many people from seeking valuable support from neurodivergent peers.

Without the support of an ND whānau, Autistic life feels like a life in continuous emergency mode.

If we are lucky it feels like running an ultra-marathon for years or decades, often at the limit of what we can sustain physically, until we burn out emotionally. If we are unlucky, we crash and burn more abruptly, both physically and emotionally. Sooner or later, we reach the point where there is no path forward without a network of trustworthy neurodivergent whānau relationships around us.

Instead of misdiagnosing and pathologising Autistic people, and instead of medication to numb the dehumanising living conditions usually referred to as “industrialised civilisation”, people need caring and supportive relationships, activities they genuinely enjoy, and purposeful work that they genuinely believe in.

This applies to all people, but this observation can not be reiterated often enough in relation to hypersensitive Autistic people, who are often immediately sent down the medical route, based on dehumanising myths that are propagated by the Autism Industrial Complex and as a result of the profound lack of understanding of the social and sensory needs of Autistic people within mainstream society.

In this society people end up getting killed by the bullshit of social competition and toxic relationships. The web of life is something entirely different, it’s an ecology of care, and in their hearts people know it, especially hypersensitive and hyper-compassionate Autistic people.

The sickness industry

Not all of modern medicine is useless, but the healthcare sector has huge problems. Here is a good article on the illusion of evidence based medicine and a related (30 min) commentary.

Jureidini J. and McHenry L. B. The illusion of evidence based medicine. BMJ 2022;376:o702

This system needs to be dismantled. It is extremely cruel, not only to our bodies but also to our minds. Via Autistic trauma peer support we are starting to catalyse more positive experiences between Autistic people over extended periods of time.

But we need positive experiences every day, every week, every month, every year, and continuously over 10+ years. This is what it takes to recover from abuse, and to gain solid ground on top of which we can build further.

Environmental engineering

The Autistic / ND whānau concept and Autistic / ND communities are important and essential building blocks of a new emerging reality.

My Autistic survival strategy to date has been one of ignoring conventional advice, distrusting all hierarchical systems of “authority”, learning to trust what the sensations in my body and my mind are telling me, and never being afraid to resort to radical “environmental (re)engineering” whenever the opportunity arose.

I left a toxic home environment immediately after finishing high school. Along the way I discovered I could manage my allergic asthma by rigorously controlling my home environment (removing all sources of allergens) and by regular exercise, without any use of ongoing medication.

However, in my late 20s doctors warned me about unhealthy blood pressure readings, that I might have a heart attack within ten years, even though I always tried to eat healthy and tried to exercise whenever I found the time. To me the source of chronic emergency-level stress was obvious. I decided to drop out of traditional employment in my mid 30s, after coming to the conclusion that so-called jobs in the corporate world are not a survivable option.

Later, around ten years ago, after further traumatising “start-up” experiences with an investor, together with my partners and colleagues, we decided to eliminate all toxic competitive and profit oriented elements from the operating model of our small company, resulting the principles that power the NeurodiVenture model, which has served us well, and which we are still using today.

By conventional measures of “success” in rich countries (no regular income, and still paying off a mortgage), work-life balance (none), numbers of friends (limited to a few Autistic and neurodivergent people) etc. the overall result is mediocre at best. But I am Autistic, and the path that I have chosen is the only one that was survivable, the only one that is compatible with my Autistic way of being, and actually, over the course of the last ten years, my stress levels have come down, I am healthier than I ever was, and the small ecology of Autistic care around me is priceless, it is my Autistic whānau.

The social model of disability applies. We need to actively encourage environmental engineering, and we need to push back against toxic social expectations. I see it as my obligation to equip future generations of Autistic people with the tools and Autistic peer support that allow them to co-create healthy ecologies of care around them.

– Jorn Bettin

Timm K. et al. “Replacing the DSM with the Neurodiversity Paradigm and Autistic Culture.” Intersectional Infinity Summit 2022.

There is nothing wrong with Autistic people, but there is a lot of wrong with a society that systematically discriminates against all forms of diversity, and especially Autistic ways of being that involve non-participation in competitive social games.

Foundational social norms for Autistic / ND whānau

The Autistic / ND whānau concept is building on the foundation of the NeurodiVenture model, which enumerates and describes the social norms needed to de-power economic relationships.

With the ND whānau concept we are extending de-powered ND relationships to human scale groups of Autists and otherwise ND people who deeply care about each other, support each other in all kinds of ways that are not quantifiable in monetary terms, and who work and live together on a daily basis: 

1. Communication is based on openness and honesty
2. Social power games are not tolerated
3. Members are committed to caring for each other’s wellbeing and to not hurting each other

The NeurodiVenture experience has led to a 7-year incremental journey of deepening mutual trust and joint projects towards full partnership. After 7 years, in our experience, it has become obvious whether a relationship is a lifetime partnership, i.e. it is one if the relationship still exists.

The simple foundational social norms we rely on not only benefit Autistic and otherwise ND people, they can be adopted in any context, to better serve the needs of all disabled and otherwise marginalised people within larger groups.

Along the way, some relationship attempts fail, and yes, that’s traumatising. But as long as there is a network of healthy de-powered relationships, the ND whānau, i.e. the biocultural organism, survives and at times thrives.

With the NeurodiVenture model we have “hacked” entrepreneurship, employment, finance, and money into de-powered lifetime partnerships based on mutual trust, egalitarian sharing of risks and resources, and development and operations of valuable services for wider society. With the Autistic / ND whanau concept we are “hacking” extended families, friendships, and romantic relationships into de-powered lifetime ecologies of care, de-powered partnerships based on mutual interests, and consenting sexual relationships.

The social structure of Autistic / ND communities

What we are aiming at with ND communities, and what we already have in embryonic form in terms of experience with ND whānau, has so far been beyond reach. But if we look carefully, we see every day how ND people are supporting each other, loving each other, and caring for each other in ways that go far beyond the culturally impaired neuronormative imagination. The social structure of ND communities is the same as the social structure in any other community:

1. An Autistic / ND whānau can be distributed across more than one community
2. A household can be part of one or more Autistic / ND whānau
3. A household is part of exactly one Autistic / ND community

Just as ethnic communities or LGBTQIA+ communities in specific cities can be overlapping and geographically dispersed to a certain extent, local or regional Autistic / ND communities can be interwoven with other communities and non-Autistic households.

The key point is that some households may select to identify as Autistic / ND, and select to focus on collaborations and relationships with other Autistic / ND households and individuals in their local community. In order for this to be viable, Autistic / ND communities need to be provided with appropriate government support and infrastructure to support community activities.

Thriving Autistic / ND communities, that act as local centres of Autistic / ND culture, can only come into existence if we can imagine new kinds of collaborations between Autistic / ND whānau and the rest of society, and if we allow designs to emerge organically from the collective intelligence that exists amongst intersectionally marginalised people at ground level.

By Jorn Bettin & Ulku Mazlum

The need to be resilient is something that Autistic people unlearn over time. We need to learn to be gentle with ourselves. With the concept of Autistic whānau we are exploring new terrain and new possibilities. It’s something that we can incrementally weave into the Autistic collaborations that are already established.

We care deeply about all the ones we love, and this is not limited to the human sphere. We are viscerally connected into our ecology of care by emotional bonds and shared experiences, and not by abstract cultural symbols.

Autistic people find interactions with the W.E.I.R.D. social world so traumatising, because that world is not predicated on relationships, mutual trust, mutual care, and shared joy, pain, and grief. The W.E.I.R.D. world is predicated on transactions, mistrust, exploitation, and betrayal. It is a world completely devoid of life and unconditional love.

The capacity for culture opens many traps for humans. Human history and the stories we tell us are full of them. Many humans have good intentions, but the cultural context desensitises humans, and turns many into zombified addicts looking for the next hit in social status and power. The addiction to adrenalin powers the junkies in financial markets. It’s very sad, to see them first hand. Most Autistic people are immune to these addictions, and this is why they are feared and sometimes hated and vilified.

Autistic whānau

Whānau : extended family, family group, a familiar term of address to a number of people – the primary economic unit of traditional Māori society. In the modern context the term is sometimes used to include friends who may not have any kinship ties to other members.

Whānau are not powered by adrenalin but by love and mutual care. Most Autists are not born into healthy Autistic whānau.

Takiwātanga : Autistic ways of being, takiwātanga literally means “in their own space and time.”

We have to co-create our whānau in our own space and time. In many indigenous cultures children with unique qualities are recognised, are given adult mentors with similarly unique qualities, and grow up to fulfil unique roles in their local community, connected to others with unique knowledge and insights, perhaps even in other communities. If we are embedded in an ecology of care, we can thrive and share the pain and the joy of life.

Whānau is much more than the Western notion of “family”. It is a deep connection, a bond that you are born into that no one can take away from you.

An Autistic whānau could be conceptualised as a soul tribe, it is not an amorphous global Autistic community, but rather a human scale ecology of care, consisting of Autistic relationships between soul mates that are bonded through shared experiences and working together.

Closely related concepts:

Whanaungatanga : relationship, kinship, sense of family connection – a relationship through shared experiences and working together which provides people with a sense of belonging. It develops as a result of kinship rights and obligations, which also serve to strengthen each member of the kin group. It also extends to others to whom one develops a close familial, friendship or reciprocal relationship.

Whakawhanaungatanga : process of establishing relationships, relating well to others.

Whakapapa : the “genealogical descent of all living things from God to the present time. “Since all living things including rocks and mountains are believed to possess whakapapa, it is further defined as “a basis for the organisation of knowledge in the respect of the creation and development of all things”. Hence, whakapapa also implies a deep connection to land and the roots of one’s ancestry. In order to trace one’s whakapapa it is essential to identify the location where one’s ancestral heritage began; “you can’t trace it back any further”. “Whakapapa links all people back to the land and sea and sky and outer universe, therefore, the obligations of whanaungatanga extend to the physical world and all being in it”.

In a healthy culture Autistic children are assisted in co-creating their unique Autistic whānau, but in our “civilisation” this cultural knowledge has been lost and is suppressed. In mainstream society people don’t understand how Autistic people support each other, love each other, and care for each other in ways that go far beyond the culturally impaired neuronormative imagination.

Autists depend on assistance from others in ways that differ from the cultural norm – and that is pathologised in hypernormative societies. However, the many ways in which non-autistic people depend on others is considered “normal”. The endless chains of trauma must be broken.

There is the saying that “It takes a village to raise a child.” The Autistic translation of this saying is “For an Autistic person it takes an Autistic whānau to feel loved and alive.”

The foundation of our whakapapa is the ocean and the mountains. Via Autistic trauma peer support we are embarking on the journey of co-creating healthy Autistic whānau and Autistic culture all over the world.

Collaboration at human scale

Every word in the title of the book on ‘The Beauty of Collaboration at Human Scale : The timeless patterns of human limitations’ has been very carefully chosen. But words have limits. What the title is trying to convey is that life feels like a dance of balancing all these words and concepts.

We’ll never be able to put a finger on it, so I say “feel” rather than “is”, and it is a dance because life is dynamic, it always evolves. Words like “perfection” or “success” are not part of the title, because they imply a universal sense of direction that regularly has gotten civilisations into trouble. Maybe the one unwritten word that emerges from the dance is “diversity”.

I spent my life until around 2014 developing a human scale meta language system – a formal visual grammar for creating all kinds of visual languages that are optimised for human cognitive limits. The motivation was similar to the motivations of Aboriginal symbolic artists over the last 70,000 years, cultivating a language system and a series of protocols for high fidelity knowledge transmission over thousands of years.

Since the Global Financial Crisis in 2007 my focus incrementally shifted from language systems to what I now refer to as human scale biocultural organisms and ecologies of care. This builds on all the earlier work on human scale language systems. With our small NeurodiVenture we now have 10 years operational experience with human scale biocultural organisms that are adapted to the needs of Autistic and otherwise neurodivergent people. Over the last 3 years I have found myself more and more involved in weaving biocultural organisms into larger ecologies of care that are beyond human comprehension, and that are not limited to humans. Mutual care at human scale, within biocultural organisms and between them, and evolution needs to replace the human hubris of “control”.

– Jorn Bettin

Those who are the most sensitive and traumatised and have not lost the ability to extend trust constitute an enormously rich and diverse repository of insights and hold many of the keys needed for co-creating ecologies of care. Collaboration at human scale within an Autistic whānau is truly beautiful, and having peers with us on our journey of expanding our parallel Autistic reality is wonderful. 

When we engage in collaboration at human scale, we are nourishing our Autistic whānau. we are feeling well if the relationships in our whānau are providing the right kind of nourishment for everyone. As evolutionary biologist David Sloan Wilson points out, small groups are the primary organisms in human societies.

The following language is a useful anthropological toolkit for developing a nuanced understanding of different cultures, the relationships between humans, and the effects of Autistic trauma.

3×3 matrix of relationship types with parameters

Categories of relationships

1. whānau/Autistic whānau (kinship, biological or culturally assigned by the local culture), permanent
2. friendship, for the duration of mutual interest and consent
3. sexual, for the duration of mutual interest and consent

Power dynamics

1. depowered
2. uni-directionally powered-up (culturally defined, or as a result of trauma)
3. bi-directionally powered-up (culturally defined, or as a result of trauma)

4×5 matrix of fundamental relationship types

Categories of relationships

1. biological kinship, permanent
2. [Autistic] whānau, culturally assigned kinship by the local culture or agreed between Autistic people, permanent
3. friendship, for the duration of mutual interest and consent
4. sexual, for the duration of mutual interest and consent

Power dynamics

1. depowered
2. uni-directionally powered-up, culturally defined
3. uni-directionally powered-up, as a result of trauma
4. bi-directionally powered-up, culturally defined
5. bi-directionally powered-up, as a result of trauma

Cultural analysis

Industrialised culture: A mix of

1. kinship (all power dynamics)
2. friendship (all power dynamics)
3. employment = friendship (uni-directionally powered-up)
4. economic slavery = kinship (uni-directionally powered-up)
5. sexual (bi-directionally powered-up)

The language in which powered-up industrialised culture is being sold: A mix of

1. Happy families
2. Many friends
3. Successful careers
4. Economic growth
5. Romantic relationships

Note that the power dynamics associated with quantifiable “success” metrics constitute the essence of industrialised culture. In this paradigm the only escape from a toxic zero sum competitive game is the equally toxic delusion of infinite growth on a finite planet.

Traumatised industrialised Autistic culture: A mix of

1. Autistic whānau (depowered)
2. friendship (depowered)
3. friendship (uni-directionally powered-up, as a result of trauma)
4. sexual (depowered)
5. sexual (uni-directionally powered-up, as a result of trauma)

Coercive power is the root of all evil.

Depowered feral Autistic culture: A healthy Autistic culture involves a mix of the following depowered relationship categories:

1. Foundation: Autistic whānau (depowered, life-long self-chosen whānau relations, i.e. life-partnerships)
2. Extension: friendship (depowered, for the duration of mutual interest and consent)
3. Extension: sexual (depowered, for the duration of mutual interest and consent)

Note that the main criterion for the stable foundation is the life-long commitment. This is what makes it work as a healthy whānau construct. We are not using the term family, because families in the modern sense are too small to be viable and sustainable.

How Autistic trauma plays out over time

Human beings are relational. We can understand all of what we feel, think, and do in terms of relationships. Things went downhill when people started to think and act in terms of egos. 

Trauma can play out in so many different scenarios. In all cases it always involves people exerting coercive power (in various forms) over others on an ongoing basis. And this is exactly what is “normalised” in powered up civilisations. It’s abuse by design, and it ripples through all of society, consistently marginalising those who refuse to join the social power games. 

Dealing with our biological family is often exhausting. We feel drained, and can barely function. We may not find enough energy to wash our face or brush our teeth. We feel understood by our peers. We intuitively feel when other Autists are struggling, even if they don’t tell us. 

We feel how our peers are struggling, because we recognise familiar patterns. Our heart, our mind, and our gut, every fibre of our body recognises the patterns. And we know this goes both ways. We understand each other’s struggles in a way that others can’t. This is what makes us human. This is what makes us Autistic. And this is what connects us to all of life, into the ecology of care that surrounds us when we are in a healthy environment. 

It takes a very perverse kind of culture to reprogram non-autistic people so that they largely lose this capacity, and to traumatise many Autistic people to the extent that they can no longer extend trust to anyone, and develop a very dim view of humans. It is a culture that is perverted to the very core. It is the system that perpetuates itself until those Autistic people who are still capable of doing so start building a parallel reality. Those that do so must find ways of caring for each other so that no one gets sucked back into the vortex of the death spiral of “civilisation” and anthropocentrism.

We live in an insane world. In a sick society. For 10,000 years humans have been mainly concerned about “powering up” their relationships with each other and with the rest of the living world. Now hardly anyone sees the root cause and the route out of the death spiral. We have been building social sand castles in the tidal zone for several millennia, and still refuse to acknowledge that the next tide of social upheaval will arrive within the next 12 hours.

This “civilisation” is a normalised state of perpetual war. If a world of powered up relationships actually worked well if only power were less concentrated and more equally distributed, the way to resolve risks such as a nuclear war would involve finding a way of distributing the nuclear weapons arsenal equally across all nations. The flaw in reasoning is obvious. The problem is not distribution but the normalisation of using power.

Some of us have seen far too much violence in our lives already and have been traumatised in too many ways. Autistic people in particular end up in impossible situations far too often. It’s okay not to be okay in this world. We need to be there for each other. We can create much safer places, where we may still struggle, but not be put in impossible situations.

We are not failures at all. The biggest failure of this world is the notion of the arrow of progress and the associated notion of success. If we fail in this world it actually shows that we have kept a profound sense of integrity, and our bodymind has not been desensitised to the suffering in this world. Also, our body and mind suffer if we are not part of a healthy human scale biocultural organism.

Once we are part of an Autistic whānau, we need to experience that it’s always okay to ask for help, and that our entire whānau will take care of us. We can only thrive together. Individual failure and success are toxic concepts that have no place in an ecology of care. These words are meant to be understood literally. Members of Autistic whānau are travelling together, caring for and watching out for each other along the way.

Autistic trauma leads us to peer support, and this leads us to Autistic whānau, which is a concept with enormous potential that can’t be overstated. The negative compels us to work towards something uniquely beautiful that transcends the crippled sense of imagination in the society that surrounds us. It is this journey together with our Autistic whānau that makes life worthwhile and that allows us to incrementally heal from trauma.

We all deserve to be loved and cared for by an Autistic whānau and an ecology of care. We leave no one behind. It is together that we co-create the magic of a new reality that makes the old reality obsolete. Using the right words and refusing to use the words that the old system wants us to use is part of the magic. The old reality wants to draw people into life draining battles, because it feeds on the energy and souls of people.

The new reality appreciates the diversity of all forms of life. It is the billion year old magic that transforms the energy of the sun into the cycle of life and the beauty of art. Magic is the art of Autistic collaboration. We take care of each other in ways that others can’t. The impossible becomes possible. This happens with all depowered Autistic relationships. The old system does not stand a chance against collaborative ecologies of care consisting of Autistic whānau.

An example of Autistic care:

“…To achieve a ‘biosphere centric’ perspective, this author undertook about 13,000 hours of undergraduate studies in Earth Sciences while studying much more than degree requirements after a lifetime of reading, mainly living in a biodiverse but degrading rural area. It involved understanding the biosphere as a massively complex web of life that evolved from bacteria over billions of years and diversified into millions of species, all related to each other, all ‘earth creatures’, of which, Homo sapiens are just one species. It is possible that I have spent 60,000 hours on this task now without respite. For Our Family…”

When abused and traumatised Autistic children become adults, the abuse often carries on in a subtle way that is fully “normalised” for the abusers. Each time when abusive parents want to remind us of our childhood, they pretend to see happy times, and we see hell on Earth. Abusers need to do this to feel good about themselves. Many never apologise for anything. We see through delusional self-serving displays of affection. We’ve intuitively felt the fakeness even when we were small children. We recoiled when our parents tried to hug us.

Abusers have children to serve their own emotional needs, without ever considering the emotional needs of their children. In civilisations that normalise coercive power, children become the commodities needed to propagate the normalisation of power, the complete negation of the human potential for unconditional love and care, the negation of collaboration based on life-long trustworthy relationships at human scale. 

In our times the damage caused by 10,000 years of power hungry empires and power drunk human primates is becoming fully visible. Over that period humans have increasingly lost the essence of their humanity.

Rebooting a parallel reality that is not infected with the seeds of the dying system is only possible from the ecology of care of feral depowered Autistic whānau that we are now nurturing into life.

Autistic people are highly sensitive. There is a whole boatload of ideas and mental models that we need to share to allow our peers to understand our context. It takes time, and it can all be done incrementally, and along the way we learn from each other. We will do anything to support the people we care deeply about. This becomes possible by focusing on human scale.

We need to learn to take care of ourselves as much as we take care of others. We notice all the energy, love, and care that our peers invest. We know what becomes possible by applying Autistic relationships in the context of an ecology of care that exists around our Autistic whānau, in the context of a growing network of depowered trusted relationships.

We know how it feels to be surrounded by slightly less sensitive but well meaning people who unknowingly pile further demands on us without even noticing. That’s where peer support can help identify overload. The more skilled and experienced we are at what we do, the more effortless it looks from the outside, and this leads some people to believe it is always easy.

Non-autistic people don’t see our struggles when we don’t tell them, and we are not telling them our struggles. We don’t complain. We probably get cranky and fussy about other things while people don’t understand while we are being cranky. We are not good at mentioning our needs and struggles, and especially not good at asking for help. In our childhood we learned not to express our needs and feelings. They were inconvenient for the people around us. So, we had to unlearn them. As children we learned that our needs and feelings are entirely irrelevant. 

Deep down we still feel our needs and emotions are inconvenient and would be a burden. We learned that people are scared of our emotional intensity, so we learn to disconnect from our emotional side. But other people can not read our minds, and this leads to endless strings of misunderstandings. 

That is one of the reasons compatible Autistic peers get along well. They intuitively pick each other’s needs and moods without needing to use many words. We are dependent on compatible Autistic peers expressing our needs and feelings.

Experiencing abandonment as a child shapes our entire life. Our top priority becomes to never ever inflict something like this on anyone. With the help and trust of depowered Autistic relationships around us we can for the first time have positive experiences, and this in turn shows us that a different reality is possible. 

We can heal if we learn not to look for acceptance and love in the wrong places. Our honesty, selfless and open nature can become a deadly weapon against us. We see the worst version of nice people. We need to watch out for each other, so that people don’t exploit our goodwill endlessly. 

Autistic people need Autistic healers. The healing is a shared experience. We need to heal in a safe place of mutual understanding. Anything else is a coping mechanism. That is why traditional therapy doesn’t work well with some Autistic people. We can not unlearn what we have learned. We are fixed.

Co-creating healthy depowered Autistic whānau

The Autistic whānau concept is an immensely valuable part of Autistic peer support, especially when it comes to trauma related to fear of abandonment. It is only when a stable reliable whānau foundation is in place at human scale that humans feel safe.

Only on top of a genuinely safe foundation of depowered whānau relationships can humans explore friendships and sexual relationships without fear of abandonment, because these are actually secondary, less foundational aspects of human social life. Regarding the social dimension and co-creating healthy depowered Autistic whānau, the following interviews are of interest:

1. Harrison Owen on Open Space and on depowering communication and collaboration
2. Oswin Latimer on how Autistic trauma affects relationships

Our basic needs are met via our whānau, especially if the whānau operates locally agreed internalised social norms that keep all relationships within the whānau depowered.

With the language introduced above, we can express the core of the problems in powered-up societies. Many relationships deteriorate and become toxic:

1. Instead of the commitment aspect of love, emotional support, and deep care, people get economic slavery at home, and economic warfare at scale
2. Instead of the friendship aspect of love, emotional support, and creative play, i.e. doing enjoyable things together, people get entrapped in career ambitions and other competitive social games, and at scale we end up with an energy and resource hungry socio-techological mono-culture
3. Instead of the sexual aspect of love, emotional support, and creative play, sex becomes a tool for emotional and physical abuse, and we end up will all the familiar social problems that we see all over the world

People knew this many hundred thousand years ago. It is no accident that the strongest social norms used to be norms against the emergence of power gradients. As soon a power enters a relationship, the quality of human / Autistic relationships is compromised, and the health of an entire biocultural organism suffers.

A single powered-up relationship causes stress in many other relationships. These observations will prove to be essential for healing from Autistic trauma and for co-creating healthy Autistic whānau going forward.

Small is beautiful. If at small human scales we co-create good company, and love each other and care for each other, we’re doing the things that are compatible with our evolutionary history. That would be a coordinated retreat from an overpopulated planet, and it would minimise human and non-human suffering.

We’ve got the necessary cultural toolkit. Now it’s a matter of deploying it locally, and not just online, in a relatively safe physical environment, with the kind of people who are ready for it. The toolkit consists of simple first principles rather than very specific cultural norms and tools. It’s more about being able to offer emotional support and being able to ask the right kind of questions to learn from each other in a safe environment than about having all the “answers”.

We deeply appreciate the care, love, protection, safety our peers can provide. It is an unusual feeling when we have never felt being taken care of the way that only other hypersensitive and traumatised Autistic people can.

When we spend time with other Autistic people, we know that life is worthwhile, that there is something worth struggling for – together. We know how it feels to struggle alone for decades, and for others to assume that we are strong and “resilient”. No, we are not that at all. The difference is that we have not lost the ability to care and love deeply, the ability to create healthy human cultures from scratch.

We need to put up a barrier to further abuse. In the same way that we can consistently use language to resensitise people to the need to co-create ecologies of care, we can use language to protect our minds from mistaking the people who raised us with people with whom we have healthy caring relationships, as we would have with parents who actually loved us unconditionally, without playing social games with us. 

We need to learn to take good care of ourselves and to ask for help from trusted peers when we need it, whatever it may be. We can help each other ask for help, because this is something that we unlearn if we have spent too long in environments where no real help is available, and where asking may even be used against us.

Many wonderful Autistic people are continuously pushed to the limit. “Normality” or “reality” is the dark cloud that is tormenting us. Some of us are struggling every day. Autistic people are hypersensitive. In the fast paced world of industrialised busyness many of us are regularly affected by stress in the form of GI problems, migraine attacks, depression, and other symptoms of chronic anxiety.

We need to start doing something about the root causes, the causes of chronic stress. Otherwise “treatments” only address surface symptoms and we may attempt to power through dangerously stressful situations that take a toll on our mental health. We need to create ecologies of care around us, so that we can start to heal. 

We often need love and care rather than many words. It helps to struggle together. It takes an Autistic whānau, an ecology of care, for us to continue. Knowing that we can count on each other keeps us going. Depowered Autistic relationships of love and care are the building blocks of Autistic whānau, i.e. healthy Autistic biocultural organisms.

We need to let each other know that there is a safe place in this world for all of us, and that many of us will do anything we can to help our peers get to a safe place. If people have manipulated or exploited us, it is not our fault. We have agency. We can shape safe places so that they meet our needs, and we must learn not to be afraid to ask our peers for help.

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

organisation	link
EUCAP	https://eucap.eu/2022/02/14/open-letter-to-lancet-commission
ASAN
Mi Cerebro Atípico	https://www.facebook.com/527565417690268/posts/1375175466262588/(Spanish) https://twitter.com/Cerebro_Atipico/status/1493196115096842241 (Spanish)
PARC
AFK
Autistic Doctors International
Autistic Collaboration Trust	https://autcollab.org/2022/02/14/open-letter-to-the-lancet-commission/
LAVA	https://lavautisme.wordpress.com/2022/02/13/open-brief-14-2-2022/
ARGH
Asociacion Autistas de Colombia	https://www.facebook.com/100442532355847/posts/152930233773743/(Spanish)https://www.facebook.com/100442532355847/posts/152930483773718/(English)
TARA	www.tara.org.au
estas
suntAutist	https://www.suntautist.ro/viitorul-ingrijirii-si-cercetarii-clinice-in-autism-scrisoare-deschisa-catre-comisia-lancet/
Suomen Autismikirjon Yhdistys	https://asy.fi/avoin-kirje-lancet-komissiolle
PAS Nederland	https://www.pasnederland.nl/home/open-brief-aan-de-lancet.html
Otoemojite	https://otoemojite.com/20220214openletter/
CLE Autistes	https://asso.cle-autistes.fr/lettre-ouverte-a-the-lancet-autisme-profond/
AAFV	https://aspergerforeningen.dk/nyheder/2205/aabent-brev-til-the-lancet-commission-on-the-future-of-care-and-clinical-research-in-autism
ASK	https://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 autistas	https://www.facebook.com/groups/respuestasdeautistas/
Autista Construyendo	https://www.facebook.com/AUTISTACONSTRUYENDO/posts/488768579439403 (Spanish)
Asperbuho	https://www.facebook.com/AsperBuho1090/posts/1292785927867616 (Spanish)
Con estilo autista	https://www.facebook.com/ConEstiloAutista/posts/469504724818250 (Spanish)
Aprender A Quererme	https://www.facebook.com/aprenderaquererme/posts/359307272863356
Neuropeculiar	https://neuropeculiar.com/2022/02/14/lettera-aperta-alla-commissione-lancet/

Thanks to wonderful Autistic conversations I think I am beginning to understand why I feel so much at home in the ocean. To date I had not connected it to healing from Autistic trauma, but now I see the connection with increasing clarity.

Firstly, that much I knew already, besides the air and remote mountain regions, the ocean is one of the few environments that at least superficially is not shaped by humans. But of course in terms of pollution and pH, and in terms of the growing number of fish farms, this is no longer true.

Secondly, and this is the part I am only fully realising as part of Autistic dialogues, the pace of life in the ocean is much more in tune with a pace that is compatible with humans cognitive capacities and limits than life in human urban environments.

Let me explain:

The universal law of underwater movement

The density of water (800 times higher than air) means that drag is very significant, which means that all living creatures move much slower in water than on land. Also any jerky movements only cost extra energy. Underwater life is about going slow and making smooth movements, or simply staying still, observing the environment with all your senses. You can learn how to do it by observing the fishes around you.

You learn the 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 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.