Reclaiming the Story of Who We Are
By David Gray-Hammond | NeuroHub Community | Mindfully Divergent Program | May 2026
What is the story you were given about autism; and did it match the life you were actually living? The first module of Embracing Our Autistic Selves opened with that question, and over ninety minutes, a rich, sometimes painful, always illuminating conversation unfolded. This post gathers the key threads.
When I first heard the word autism, it was described to me as a person trapped inside their own little world; living in a bubble, cut off and unreachable. For a long time, I tried to fit that description, but something never quite added up.
“I didn’t feel like I existed in a bubble,” I told the group. “If anything, I felt so connected to the world that it was overwhelming. It was bombarding me at all angles. I didn’t feel isolated from the world. I just didn’t feel like I belonged there; and maybe that was partly because of descriptions like that one.”
That mismatch, between the story handed down and the life actually lived, is exactly what this course, part of NeuroHub’s Mindfully Divergent program, is designed to address. Module 1, How We Know Autism, invites participants to look honestly at where our understanding of autism comes from, whose interests it has served, and what it might mean to step outside it.
— THE FIRST WORD —
When Did You First Hear The Word “Autism”?
The session opened with a deceptively simple question: When did you first hear the word autism, and what did it mean to you in that moment? The answers came from every direction of the group and told a story all by themselves.
FROM THE DISCUSSION
“Because I’m an old person who grew up in the 60s and 70s, I knew it from just the total stereotypical version; an insult. The film Rain Man. The different people, the severe othering. I think that’s why it took me decades to recognise it in myself, because of the stereotype of the male version. I don’t think it even occurred to me that females could have it.” — Participant
“The first time I heard about autism was when someone had brought it to my parents’ attention when I was at school. But they said it would have been noticed by now, as I’m 22, they said if it was autism, I would have been noticed as a child.” — Participant
“My first encounter was watching a programme in the 70s about a young man who could draw the whole of St Pancras Station from memory. The programme was set up as though he was an incredible freak. I remember feeling two things: complete wonder at the detail he could recall; and then fear, because the people watching it with me just projected their own fear. They couldn’t see the wonder.” — Participant
There is something poignant and instructive in this exercise. Nearly every first encounter with the word “autism” was coloured by othering, fear, or the narrowest imaginable picture of what autism could look like; almost always male, almost always white, almost always signified by either savant ability or severe impairment. The message received, almost universally, was: autism is something to fear, avoid, or be relieved you don’t have.
Which means that for the many people who went on to discover they were autistic themselves, that was the identity they had to first confront — and then, painstakingly, undo.
— FEAR OF DIFFERENCE —
The Uncanny Valley And The Fear Of Being Human, Differently
One observation about fear became a thread I pulled on. There is a concept sometimes applied to Autistic experience called the Uncanny Valley effect, the notion that when we perceive something as almost-but-not-quite human, we experience an instinctive revulsion. Some researchers have argued that this is what happens in many people’s responses to Autistic people: we are human, but a different kind of human, and society has been trained to fear difference.
“Difference is not a scary thing, it is a vital part of human existence. It’s something we require as a species in order to exist. It’s diversity that makes a species strong and sustainable. One of the challenges for us as autistic people is helping others understand the necessity of our existence.” — David Gray-Hammond
Several participants reflected on how that fear had been transmitted through cruel language, through the treatment of children at school, through the way being different was understood as a moral failure rather than a natural variation. One person shared how hearing her grandparents speak about people with disabilities in deeply dehumanising terms had left lasting impressions; impressions that shaped what she understood autism to mean long before she came to understand herself.
— A CONTESTED HISTORY —
How Medicine Made Autism And Who Got Left Out
To understand where we are now, we have to go back. The history of how autism has been clinically framed is longer, messier, and more politically loaded than most people realise.
1920s
Grunya Sukhareva: The Description That Was Buried
Before Leo Kanner, before Hans Asperger, a Ukrainian-Jewish psychiatrist named Grunya Sukhareva was writing about children whose experiences we would now recognise as autistic. Crucially, she described them in more affirming terms, not as defective, but as different. Her work was largely erased. She was Jewish, Ukrainian, and, as Helen pointedly added in the session, she was female. Those three facts were more than enough for her insights to be discredited and ignored for decades. Only in recent years has her work begun to resurface.
1940s–1950s
Leo Kanner And “Classic Autism”
Leo Kanner is commonly credited as the first to formally conceptualise autism, what people still call “classic autism” today. His model emphasised delayed language development, difficulties with social communication, fixed and repetitive interests, and repetitive movement. Kanner’s research was conducted almost exclusively on a narrow sample: white, European, male children. The limitations of that sample would go on to shape autism research and diagnosis for decades.
1940s–1970s
Hans Asperger: The Ethical Shadow
Hans Asperger, whose name became synonymous with one presentation of autism, was, as far as the historical record indicates, a Nazi sympathiser whose work involved sorting Autistic children into categories of usefulness to the regime. Those deemed capable were protected, those deemed unproductive were handed over to their deaths. I was direct: “There was an attitude of saving the useful ones whilst disposing of the unuseful ones. And that attitude, you could argue, is still present today; we may approach it differently, but it hasn’t fully gone.”
1950s–1970s
Bruno Bettelheim And The “Refrigerator Mother”
Bettelheim’s theory that autism was caused by cold, emotionally distant parenting, the infamous “refrigerator mother”. This was eventually debunked, but its legacy has proved remarkably durable. The burden of blame fell almost entirely on mothers, a pattern that has never fully disappeared. It should also be noted that Bettelheim was practicing as a psychiatrist without the relevant qualifications or experience.
1980s–present
Simon Baron-Cohen, Theory of Mind, And The “Extreme Male Brain”
Baron-Cohen’s work, particularly Theory of Mind and the Extreme Male Brain theory, has been enormously influential, and enormously problematic. An attendees comment that she had ruled out autism for her daughter in 2012 after reading about the Extreme Male Brain theory is a perfect illustration of the real-world harm these framings caused; entire groups of people excluded from recognition because a researcher’s theory was built on the wrong sample and the wrong assumptions.
Seen as a sequence, this history tells a consistent story: autism has been framed, almost without exception, through the lens of deficit, dysfunction, and a template built from a very narrow slice of humanity. What Sukhareva showed, that a more affirming framing was available from the very beginning, was systematically suppressed.
— POLITICAL ECONOMY —
Who Benefits When Difference Is Medicalised?
I posed the question to the group directly: What assumptions about normal development sit beneath these early definitions? And who actually benefits when difference is medicalised in this way?
The first answer: “Only productivity brings value to human lives, and the people who benefit are big pharma and the medical establishment.” It was an answer I found largely convincing, and the discussion deepened from there. An important nuance however within this framing is that both big pharma and the medical establishment do have important roles to play in human wellbeing. However, I was largely convinced because it made an important comment on the dominance of capitalism in marginalised lives.
“A lot of our ideas around normal development and the medicalisation of certain identities are rooted in a capitalist society. You can see, as we move through the Industrial Revolution into the early 20th century, this rush of productivity culture. When it comes to autistic people who don’t fit into the workforce as easily, there’s a great deal of marginalisation and medicalisation. It’s almost like they’re monetising us when we can’t produce the profit ourselves.” — David Gray-Hammond
Applied Behavioural Analysis is perhaps the clearest example of this dynamic. ABA is a multi-billion dollar industry in the United States, classified as a gold-standard therapy despite widespread and well-documented opposition from Autistic people who call themselves survivors of it, and the world of independent research. Children are sometimes required to undergo forty hours of ABA per week, more than many adults work. The parents of those children are, meanwhile, paying thousands through insurance or private fees, having been persuaded that compliance training is the same as support.
Attendees perspective from teaching: As a former early years educator, she described the moment it became clear that funding for children with additional needs was being redirected not towards those children, but towards teaching assistants who could push borderline children above the threshold that would improve the school’s performance tables. “The children weren’t seen as anything really, just a pot of money that could go somewhere else, to make them look better in the league tables.”
Another attendee made a further point that went beyond the financial: many Autistic people hold fundamentally different values, around ecology, community, the meaning of money, that are a direct challenge to the system as it currently operates. “I think the system is very much aware of that,” they said. The medicalisation of Autistic difference, from this angle, is not merely about profit. It is also about managing a perspective that asks uncomfortable questions about what the dominant culture takes for granted.
— THE FICTION OF NORMAL —
The Average Man Is a Fictional Character, And Always Was
Central to the medicalisation of autism is the concept of normal development, the idea that there is a correct sequence of milestones that a developing human being should pass through, and that deviation from that sequence is a problem to be corrected.
Helen, speaking from her own background in early years education, described how this starts from birth: “It begins literally with health visitor appointments and the red book, is your child crawling by this age? Babbling by this many weeks? And it doesn’t take into account any kind of variability of spiky profiles.”
My challenge to this framework went all the way to its mathematical foundation. In the late 1800s, a Belgian statistician named Quetelet applied statistical averaging, a method previously used only in astronomy, to track the movement of stars, to human beings, and created what he called the “Average Man”. Quetelet intended it as a theoretical model, he himself wrote that the average man was a fiction. Yet the concept was seized upon and applied as though it described a real and attainable standard. Our developmental milestones, our growth charts, our body mass index, all of these descend from the use of statistical averages on humans.
“By Autistic standards, our development is aggressively average, for most of us. We are just on a different developmental path, being judged by the standards of a privileged group. The question is: what would developmental measurement look like in a neurocosmopolitan society, where no single neurocognitive style held privilege over another?” — David Gray-Hammond
I offered a reframe I find myself returning to repeatedly; the monotropic mind processes experience in extraordinary depth and detail, where a more polytropic thinker might take in surface-level information and integrate it quickly, a deeply monotropic person is integrating a vastly larger dataset. It simply takes longer, not because there is something wrong, but because the file being downloaded is a hundred times larger. “I didn’t hit adulthood until I was in my 30s,” I said. “A lot of my development happened in my late 20s into my early 30s.”
— THE PARADOX OF DIAGNOSIS —
The Double-Edged Sword: Categorisation, Control, And Community
Here the discussion turned to something genuinely complex; if diagnosis and categorisation have been used to oppress us, why does the concept of autism as a shared identity still matter?
I was honest that I find the question paradoxical. “I think splitting this into categories is both incredibly harmful and incredibly helpful. By letting us split into identity groups, it does make it easier to apply methods of control to us; when you’ve identified a group of people who all exist in the world in a particular way, it’s much easier to legislate their identity out of existence. But there is also real benefit in finding people with similar experiences of the world to you; to build connection, feel more confident, and find the support you need.”
FROM THE DISCUSSION
“By not allowing us to have variation, it makes us more controllable. But I also recognise the pragmatic value of having a category; in the UK, having a diagnosis is often what gets you access to support. What concerns me is how those numbers, once on medical records, can be used against us. We saw this in Covid, with DNR orders placed on people with a diagnosis of autism or learning disability.” — Attendee
The divide-and-rule dynamic extends within the Autistic community itself. The subcategorisation of Autistic people, into “high-functioning” and “low-functioning”, into Asperger’s and “classic” autism, has repeatedly been used to split the community against itself. I was clear about where I stand: “I don’t care whether you’re an Autistic person with profound or multiple learning disabilities, or whether you’re an Autistic person like me who can talk at length for an hour and a half. You’re one of us, you’re part of our neurokin. What is done to one of us is done to all of us.”
On self-identification: “To my mind, a person who thinks ‘maybe I’m Autistic’ is probably Autistic enough to call themselves Autistic. Neurotypical people don’t go around worrying that they might not be neurotypical. That’s not how neurotypicals are.”
— A MOVEMENT REBORN —
The Neurodiversity Movement: Where It Actually Came From
The modern neurodiversity movement is often dated to Judy Singer’s 1998 essay, but this attribution is, at best, incomplete. The concept grew from an early 1990s online forum called INLV (Independent Living), where Autistic people gathered to compare their experiences and identify the ways they were being systematically oppressed. The language of “neurological diversity” developed from those conversations. Helen shared a paper in the session that made this point explicitly; the concept of neurodiversity was a collective effort, and should be recognised as such.
The word “neurodivergent” was coined by Kassiane Asasumasu to mean to diverge from the typical performance of neuronormativity. It is important to note that neurotypicality, in this framework, is not itself a neurocognitive style, it is a performance, a set of norms derived from those arbitrary statistical averages.
“Neurodivergence is a sociopolitical identity; it is not a diagnosis. It is a divergence from the status quo, a separation from the oppressive systems that have been doing us harm and framing us in ways that have not been conducive to our thriving.” — David Gray-Hammond
— DISABILITY, IDENTITY, ECOSYSTEM —
Can Autism Be Disabling And A Valued Identity At The Same Time?
This is perhaps the most philosophically substantive question the session addressed. The answer, I argued, depends entirely on how you understand disability itself.
In NeuroHub’s ecosystemic model, disability is considered at three levels simultaneously: the body-mind environment (what is happening internally); the immediate environment (relationships, sensory context, the demands of day-to-day life); and the structural-political environment (the power structures and ideological frameworks that shape both of the above). Disability is not a fixed property of the person, it emerges at the interface between a person and an ecosystem that was not built with them in mind.
“If disability is something being done to us by the ecosystem around us, it has nothing to do with how valuable our identity is, and everything to do with the way society treats people who share in our identity. We are valuable members of society, but we are treated worse because we do not fit those normative models.” — David Gray-Hammond
I illustrated the point with a personal anecdote; I have been on crutches for about a year following a serious injury to my left foot. At home, in the environment I have shaped around my own needs, applying the principle of nesting, arranging everything to minimise difficult transitions, I barely notice the crutches. Outside, it is a different story; strangers stop their cars to let him cross, and as I catch their eye, I see pity.
“I’m 36, I’m not an old man,” I said. “Why are you looking at me with pity? In that moment, disability has been imposed on me. I don’t feel disabled, but then I see that look, and I realise that the identity being placed upon me is that of the poor disabled person who needs the allowances of people letting me cross the road. I feel it’s my place, not the place of others, to decide whether or not I deserve to be pitied.”
FROM THE DISCUSSION
“I only feel disabled when I leave my flat. When I’m in my space, where I know where things are, where I can do what I need to do, where I feel safe, the environment feels safe because I can be myself. But when I leave, my nervous system just flicks a switch. I’m constantly hypervigilant because of my sensory differences to the world around me.” — Attendee
FROM THE DISCUSSION
“I think this cuts to the core of society’s fear of disability. So many people balk at the idea of a significant percentage of the population needing support in ways that aren’t currently accommodated. There is the perceived cost of meeting individual needs, the idea that the human race is somehow ‘weakened’ by disability, and the fear of facing reality; that every single human will experience disability at least once in their life.” — Adele
— WHERE WE ARE NOW —
“Neurodiversity Lite”: The Performance Of Progress
As the session drew towards its close, I raised what I called one of the big problems irking me at the moment: the rise of what is termed “neurodiversity-lite”.
You have seen it, the social media posts in April or for Neurodiversity Awareness Week. The corporate keynote speakers, the promise of inclusivity on career pages, the posters in reception areas. Then, in practice, no meaningful change to the working environment, no adjustment to the culture, no structural support for neurodivergent employees. Neurodiversity, in these contexts, is being worn as a brand rather than enacted as a commitment.
“Understanding autism means having the competence to know how to adjust your part of the ecosystem to be a place that is not actively hostile to Autistic people. So often that work falls to us, we are introduced to a new part of the ecosystem, it might be a new job, a new home, a new relationship, and it always falls to us to explain what we need and fight for the things that should already be there. For me, understanding autism is having the understanding to put in the work to stop us from constantly having to fight for our place in society.” — David Gray-Hammond
One attendee made a point that resonated strongly: real progress in neurodiversity, as in every civil rights movement, requires the privileged to stop performing acceptance and start actively voicing need. “The showing off of acceptance and awareness has to change into them voicing our needs, or stepping up”, they said.
Rebecca Zobeck offered a quietly radical framework for what genuine understanding would require; learn to meet Autistic people as individuals rather than as members of a category; actively work to dismantle hierarchies of value that position neurotypical cognition as the default standard; and end the pressure, structural, cultural, and interpersonal, to assimilate.
The question of who decides when understanding has been achieved? Helen was clear: “Understanding autism means nothing if Autistic people aren’t the ones defining it.”
We Are Planting Trees We May Not Sit Under
An attendee spoke about managing expectations, about the particular grief of leaving the flat and hoping for kindness and being met, again, with judgment. The neurodiversity movement is, in the grand scheme of things, extraordinarily young. The earliest work that would become the movement is barely a century old. On the timescale of human culture and social change, that is barely anything at all.
“It is the fundamental grievance of all civil rights movements, change is a gradual process. Perhaps the work we do today will create a better world for the people of tomorrow.” — David Gray-Hammond
The attendee responded: “Without the foundations that people like Nick Walker, Steve Silberman, and others are laying, without us holding community and holding space in the way we do here, they will succeed in erasing our stories and our voices. So it seems like a really key tipping point of a time. We have to lay a foundation now for the future.”
Adele, earlier in the session, had offered a phrase that seemed to crystallise this: plant trees you will never sit in the shade of. That is exactly the kind of work that the neurodiversity movement is; tending something whose full fruits may be harvested by generations not yet born, but knowing that the tending matters nonetheless.
A Closing Reflection: Releasing What Was Never Yours
I closed the session with a brief mindfulness visualisation, a practice drawn from my background as a mindfulness practitioner. I invited participants to close their eyes and to stand, in their imagination, at the edge of a deep ocean.
“Consider all of the stories of who you are as an Autistic person that were passed to you by other people; all of the ideas that became a heavy weight to carry. Feel that weight growing in your hands, heavier and heavier as you add more and more of the stories and framings and concepts to it. Feel, for a moment, the weight of other people’s views of who you are. And then release it into the water in front of you, and let it sink. Because it was never yours to carry. It’s your turn to decide who you are as an Autistic person. The stories of others are not your burden to hold.”
The session ended with a reminder that carries through to everything NeuroHub works towards; history is something we are inside, but we can challenge it. The story of autism has been written largely by people who were not Autistic, in service of interests that were not ours. But the story is not finished, and the next chapter is ours to write.
“Who you are as an Autistic person is your story to tell; not anyone else’s.” — David Gray-Hammond
Session 2 — What Is My Relationship With Autism? Continuing Friday, May 8th 2026, 6pm UK Time. Recording available via NeuroHub Community for those who missed this session. All course resources are compiled in the NeuroHub resource document shared after each session.
