The History of Autism and the Problem with “Awareness”
Why World Autism Day still isn’t enough, and what comes next
There is a story we’ve been told about autism. A story of deficits, tragedy, of something that needs fixing; but like all stories, it depends on who is telling it. The history of autism is not just a timeline of discoveries. It is a story of power, language, and who gets to define reality; and who is forced to live inside those definitions.
If we are honest about that history, we see something uncomfortable. The way we understand autism today did not emerge naturally. It was built, layer by layer, choice by choice. That means it can be rebuilt.
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Autism Before Diagnosis: Difference Without a Name
Autism did not begin in the 1940s. Autistic people have always existed.
Long before clinicians arrived with clipboards and categories, societies noticed people who moved differently, spoke differently, focused differently. Medieval accounts describe “holy fools”, changelings, reclusive artisans; people positioned somewhere between reverence and fear. These were were cultural interpretations, rather than the medically defined definitions we are familiar with in contemporary eras.
Difference was understood through morality, spirituality, superstition; not neurology. The modern mistake is assuming that without a diagnostic label, autism did not exist. The opposite is closer to the truth. Autism existed, but the meanings attached to it shifted depending on the world around it.
Even early documented cases, like Hugh Blair of Borgue in 18th-century Scotland, or Victor, the so-called “Wild Boy of Aveyron”, show us something recognisable. Not as pathology, but as difference. Diagnosis did not create autism, it created a way of talking about it.
The Birth of Autism as a Diagnosis
In the early 20th century, the word autism begins to take shape. It comes from the Greek autos, meaning “self”. However, its early use described withdrawal; something to be explained, not an identity to be claimed. Then, in the 1940s, autism became formalised through the work of Leo Kanner and Hans Asperger.
Kanner described “early infantile autism” as rare, severe, and emotionally detached. Asperger described children with intense interests and strong verbal ability; what later became known (for better or worse) as Asperger’s syndrome. There is something important to understand here; both of these models were built from the outside looking in.
They were observational.
Clinical.
Detached from lived experience.
They were shaped by the political realities of their time.
Asperger’s work, for example, was embedded in Nazi-era Vienna; a context where ideas of worth, productivity, and usefulness were not abstract concepts, but matters of life and death. So from the very beginning, autism was not just about difference. It was about value.
The Pathologising Era: When Difference Became Disorder
As autism moved into mainstream psychiatry, it became something to diagnose, treat, and correct, with that came harm. One of the most striking examples is the “refrigerator mother” theory, which claimed autism was caused by cold, unloving parenting. Families were blamed, parents were traumatised, Autistic people were misunderstood. This was not fringe thinking. It was institutional.
Then came behaviourism. The idea that behaviour could be shaped, trained, and normalised. This gave rise to interventions like ABA (Applied Behaviour Analysis) and later PBS (Positive Behaviour Support), often marketed as more “gentle”, despite being rooted in the same assumptions. Underneath these approaches is a belief:
That neurotypical behaviour is better than Autistic behaviour.
That compliance equals success.
That difference should be reduced.
This is neuronormativity in action. A system that does not ask how to support difference, rather, how to erase it.
Awareness: A Double-Edged Sword
By the 1970s, autism entered public awareness. Organisations formed, campaigns began. April became Autism Awareness Month.
On the surface, this looks like progress, however, awareness is not neutral. Many of the dominant narratives that emerged during this period were built on fear.
Autism was framed as :
Devastating.
Burdensome.
As something that ruins families.
Large organisations built campaigns around these ideas, shaping public perception for decades. When you tell the world that autism is tragedy, the consequences are real. It influences policy, shapes funding and justifies intervention. Most importantly; it silences the voices of those living the experience.
When Advocacy Causes Harm
It is important to say this clearly. Not all advocacy is good advocacy. Some of the most visible autism organisations have been widely criticised for:
Promoting cure-focused narratives.
Funding unethical or questionable research.
Excluding Autistic people from leadership.
Using fear-based fundraising.
This is not just ideological disagreement, it is about impact. Autism being framed as something to be fought made it easier to justify harmful practices. When Autistic people are excluded from conversations about autism, the result is predictable. We are spoken about, but not listened to.
The Rise of Neurodiversity
In response to this, something powerful began to grow; the neurodiversity movement. Not led by institutions, rather, by Autistic people. Grounded in lived experience. Emerging from early online communities in the 1990’s, neurodiversity reframed autism as a natural variation of human experience, a form of neurological diversity.
Not something broken. Something different.
This does not deny distress, but it changes the question from:
“What’s wrong with you?”
To:
“What has happened around you?”
What environments are you navigating?
What systems are shaping your outcomes?
This is why the ecosystemic understanding I often refer to becomes essential. Distress and disability do not exist in isolation. They emergs from the interactions between bodymind, environment, and systems. Autism, in this framing, is not the problem.
The ecosystem is.
World Autism Day: Awareness Without Change?
On December 18, 2007, the United Nations declared April 2nd as World Autism Awareness Day, the first official observance took place in 2008. The aim was clear:
Improve understanding
Improve support
Improve quality of life.
Yet, much of what followed remained surface-level.
Campaigns prioritised visibility over understanding.
Symbolism was prioritised over structural change.
Awareness as a buzzword took precedence over acceptance.
“Light It Up Blue” became globally recognised, but also widely criticised by Autistic people. Visibility without representation is not progress. It is performance.
So we have to ask:
Awareness for who?
And for what purpose?
From Awareness to Justice
There has been a shift in recent years.
From awareness, to acceptance, to something deeper; Justice. Awareness is passive, acceptance is relational, but justice is structural. Justice asks:
Are Autistic people safe?
Are we supported?
Are we listened to?
Are we able to exist as we are?
It moves beyond campaigns and into systems; education, healthcare, employment, policy. It demands change.
A Story Still Being Written
The history of autism is not finished. It is alive, shaped by language, culture, and relationships. The question is no longer just what autism is, it is becoming:
Who gets to define it?
Because if the history of autism was built without us, then the future must be built with us. We do not need more awareness. We need better stories, better systems, stronger communities.
Above all; we need to listen to Autistic people.
Call to Action
If this piece resonated with you, consider supporting the work we’re building through NeuroHub Community. This isn’t just about understanding autism, it’s about changing the conditions Autistic people live in. Real change doesn’t happen through awareness alone. It happens through connection, community, and collective action.
Check out our online neurodivergent community and our re-storying autism course to see the ways that NeuroHub Community are helping to re-write the story of autism.