Autism Itself Has Changed Since 2009, Not Just the Way we View It
The definition of autism has changed and broadened in the past 15 years
An alert reader mentioned an important point I deliberately left out of my post which noted that RFK Jr. says almost the same things as Autism Speaks did in 2009. Specifically:
“Kennedy has said autism ‘destroys families.’ He said children with autism ‘will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted.’”
As the reader pointed out, the definition of autism has changed in the past 15 years. A new edition of the diagnostic manual (DSM-5) came out in 2013. People who had been separated into “autism,” “Aspergers”, or “pervasive developmental disorder not otherwise specified (PDD-NOS)” were grouped together as “autism spectrum disorder.” The criteria also changed.
One key change, requested by autistic people: atypical sensory processing is now included as a diagnostic trait. Specifically:
“Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).”
A number of people who process sensory information in atypical ways did not meet criteria for autism in 2009.
Furthermore, with greater awareness, and much-reduced stigma, older people with subtler traits are now diagnosed. People are now even asking to be evaluated. It’s amazing how many people will consider the possibility of having autism when the label no longer implies a lack of humanity.
RFK Jr.’s description of autism is even less true now than it was fifteen years ago.
However, it wasn’t accurate then, either.
RFK Jr. only describes only an extremely-disabled subgroup of people diagnosed with autism. Now, the people he describes make up an even smaller percentage of the autistic population.
However, that’s not my main objection to what RFK Jr says.
I would oppose his funding priorities even if every autistic person, then or now, was as “low functioning” as he describes — because they harm everyone.
When we assume autistic people have no desire to communicate, we don’t pay attention to their attempts to do so. That will disproportionately affect people who can’t speak, and require attention to understand.
When we assume they cannot, say, write a poem, we don’t bother trying to teach them how.
Research aimed at discovering a way to prevent people from being “born with autism” in the future doesn’t help people already alive now.
RFK Jr is playing fast and loose with the definition of autism, and it’s even more obviously absurd now. But that’s the least of my concerns.
Well said, except that 'autism' was already very widely used to describe the whole autistic spectrum, well before DSM-5. The specific subcategory you seem to be referring to here was officially 'Autistic Disorder' in DSM-IV, not 'autism'. It's true that the word 'autism' was sometimes used in this way, but it also has a long, long history of broader use (even though Wikipedia, bafflingly, went on using it to specifically mean what's sometimes called 'Kanner autism' or 'classic autism' until just a year or two back). Asperger, for example, referred to the kids he saw as 'autistic' (or 'autistisch', anyway)!
How sad RFKjr a man in a position to perpetrate a definition that is inaccurate for a very large group of citizens- the DSM a tool of control that is used to create policy that can help or deter the integration of the autistic into society. Please write more re autistic/Asperger’s lobby so your readers can support accurate science.