When a group of psychiatrists decided Asperger Syndrome should be redefined as Autism Spectrum Disorder (ASD) six years ago, the move sparked controversy.
Will a diagnosis be reclassified or removed?
Families of children with Asperger’s feared their condition would not be viewed as severe enough to warrant an autism diagnosis under the new criteria. Many feared losing services for their children as media reports at the time suggested almost all those with Asperger’s, and around 25% of people with more severe autism, would lose their diagnosis.
“We are seeing a generation of families that were really inculcated with this message that cure is the only pathway for their advocacy realising that that’s not productive and their autistic children will become autistic adults.”
Six years on the fears proved groundless. The update of the DSM, which provides diagnostic guidance to psychiatrists, did not leave huge swathes of people cut adrift as feared.
Then last year the world’s other major diagnostic manual, the International Classification of Diseases (ICD) 11, followed the DSM’s lead and collapsed Asperger’s into ASD.
A divided community
But while the move may have brought about greater diagnostic consistency, some believe divisions within the autism community have never been deeper.
Feda Almaliti, vice president of the US National Council on Severe Autism (NCSA), believes grouping everyone together under the diagnostic umbrella of ASD has been a backwards step.
She believes the old system that offered separate diagnoses, and distinguished clearly between those severely affected by their condition and others more mildly impacted, provided greater clarity.
Muhammed, Almaliti’s 14-year-old son, has had applied behaviour analysis (ABA) therapy for what she describes as his severe autism. The therapy, which is a rewards-based approach to learning, is controversial with neurodiversity advocates. Critics say ABA denies people with developmental disabilities rewards if they fail to show behavioural improvements and liken the therapy to dog training.
Almaliti says the conflict in the autism community between neurodiversity advocates and families who see the condition as a severe disability that demands treatment has never been more ferocious.
Families who favour treatment and therapy are dismissed as “curebies” and told they don’t love their children by some neurodiversity advocates in online exchanges.
Do different diagnoses clarify different needs?
So, did the 2013 decision to create an umbrella diagnosis intensify the conflict by emboldening people who would previously have been diagnosed with Asperger’s to feel they could speak for everyone on the spectrum?
Almaliti, who also has a 21-year-old son with what she describes as Asperger’s, said: “It definitely means there’s no clarity about the different needs.
“I don’t know if it’s emboldened them (neurodiversity advocates) or not. I’m an Arab woman, I’m a Muslim, I’m an American. I cannot speak for every single person and just be like, ‘Listen to me because I know’.
“Everyone’s experience is different and I think autism’s spectrum is more different than that.”
Almaliti, 42, from California, believes an ASD diagnosis is now in danger of meaning “nothing”. The diagnosis can apply to both the chief executive of a major technology firm and someone with a learning disability struggling with self-harm, she said.
Meaningful differences
Professor Francesca Happe served on the work group set up by the American Psychiatric Association (APA) that collapsed Asperger’s along with pervasive developmental disorder not otherwise specified (PDD NOS) and autistic disorder into the single ASD diagnosis.
Happe, of King’s College London, believes the civil war that’s opened up within autism reflects a wider social trend towards abusive online debate that lacks the restraint of face-to-face discussion.
She said: “I take your point that there’s a logic that says, ‘If you call me the same thing as the child who I can see with their parents then I feel I can speak for that child’.
“But I’m dyslexic and I don’t feel I can speak for another dyslexic person and certainly not for somebody who was dyslexic and blind for example or dyslexic and had some other difficulty.”
Happe says the diagnostic criteria were riven with inconsistencies that had to be tightened up before the 2013 revision. She and the other work group members felt there was no meaningful difference between a diagnosis of Asperger’s and high-functioning autism.
Also, subjectivity was a major problem — whether someone walked away from a specialist with a diagnosis of Asperger’s or autism depended hugely on the psychiatrist involved. And they felt there was no scientific reason for the Asperger’s/autism distinction — both were manifestations of the same underlying condition.
Ari Ne’eman, who set up the US Autistic Self Advocacy Network (ASAN), backed the move towards a unified ASD diagnosis.
And he believes divisions in the autism community were “much, much worse” a decade ago than today. Ne’eman, 31, who has autism, said: “At least, to my perception, over the course of the last decade we’ve seen growing areas of consensus in the autism world.
“We are seeing a generation of families that were really inculcated with this message that cure is the only pathway for their advocacy realising that that’s not productive and their autistic children will become autistic adults.”
The diagnosis’ future
So while reservations remain about the current definition of ASD, what might it look like in future editions of the DSM or the ICD?
Happe said the only autism distinctions “we could put money on” as likely to appear in future editions of the DSM would be to break up the condition on the basis of language ability and learning disability. She maintains autism with and without learning disabilities and language difficulties “are very different things”.
“They have very different needs, very different prognoses,” she said.
But creating a new diagnostic term for these groups is “questionable logically”, since autism can occur without learning disability and language problems, says Happe.
Caption: Feda Almaliti with her autistic son Muhammed — the mother believes conflict within the autism community has never been more intense.
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