Autism as a clinical category is younger than most people assume. The word entered the medical literature in the 1940s. The diagnostic criteria as we now know them are largely products of the late twentieth and early twenty-first century. The version of autism that anyone over fifty was working with in their childhood is not the version a teenager would be given today. The frame has moved repeatedly, and it is still moving.
A young clinical category
The early descriptions were narrow and skewed. The clinicians doing the describing had access to a specific subset of children, mostly white, mostly boys, mostly from families who could afford to bring them in. The descriptions reflected that subset, and then the diagnostic criteria were built from those descriptions, and then the wider population was assessed against the criteria. The result was decades of underdiagnosis for everyone who did not look like the original sample. Girls. People of colour. Adults. Working-class families. First Nations communities. The people the original literature did not see.
Decades of underdiagnosis
For most of the twentieth century, the dominant frames were also wrong about cause and about character. Refrigerator mother theory blamed Autistic children’s autism on their parents’ supposed coldness. Behavioural theory framed autism as a set of habits to be trained out. Both did real harm. The damage of refrigerator mother theory falls particularly on the mothers who lived through it, many of whom are still alive. The damage of behavioural theory continues, in the present, in the form of intervention industries that sell normalisation under therapeutic branding.
What changed, slowly, was who was doing the describing. By the late 1990s, Autistic adults were writing about their own experience in numbers that began to shift the literature. The neurodiversity movement emerged from this work. Autistic-led research started to challenge the deficit frame from inside the academy. The diagnostic criteria broadened in the 2010s, with the DSM-5 collapsing previously separate categories (Asperger syndrome, PDD-NOS) into the spectrum frame, and with later guidance recognising that adults could and should be assessed.
What changed
What changed in the public conversation came more slowly. The puzzle piece era. The awareness ribbon era. The blue-lights era. Each one ran its course and was eventually challenged from inside the community for what it had erased or misrepresented. The shift to Autistic-led campaigns, identity-first language, pride frameworks, has happened mostly in the last ten years, and it is not finished. Most major Autism organisations globally are still parent-led or clinician-led. The Autistic-led ones are growing.
Where this leaves us
Where this leaves us. The version of autism in your file, if you have one, is shaped by who was writing the criteria when you were assessed. The version of autism in your parents’ generation may have meant something different again. The version of autism the next generation will grow up with is being written now, partly by us. If you are wondering why so many people are being diagnosed as adults, it is not a spike. It is a correction.
This is a younger field than it looks. The people who were misread by it are still here. The work of redescribing is ongoing.
