The problem with diagnosing profound autism

There has been a growing demand in recent years to separate “profound autism” into its own diagnosis, outside current parameters.

Since 2013, autism diagnoses have been split into three levels, ranging from “some support required” to “requires very substantial support”, said The Autism Service.

Support for the addition of the “profound autism” category, first proposed in 2022 by a board of international experts in The Lancet, is gaining traction. Some experts think it will bring welcome care to those who require it most, while others say it could mean other members of the autistic community are neglected.

What is profound autism?

The proposed term would describe individuals with autism who “have little or no language (spoken, written, signed or via a communication device), who have an IQ of less than 50, and who require 24-hour supervision and support”, said Kelsie Boulton, Marie Antoinette Hodge and Rebecca Sutherland on The Conversation. This category would only be diagnosable for ages eight and over, when individuals’ “cognitive and communication abilities are considered more stable”.

In their study of 513 autistic children assessed between 2019 and 2024, the researchers found that around 24% of participants met, or were at risk of meeting, the criteria for profound autism.

How has understanding evolved?

US Health Secretary Robert F. Kennedy Jr claimed last autumn that there was an “epidemic” of autism across his country, falsely linking it with vaccines or Tylenol, which is known as paracetamol in the UK. The “unproven and debunked” claims about the causes of autism “threatens public health, even as officials funnel more money into research”, said The Associated Press.

Autism rates have been on the rise “for decades”, but there are solid reasons for this, said The Independent. The diagnosis of autism spectrum disorder, adopted in 2013, is now “very broad”, including many people with low support needs, and there is “better awareness of the condition”, leading to more diagnoses.

The concept of an autistic “spectrum” has been widely accepted since it was coined in the 1980s by psychiatrist Dr Lorna Wing. “Groundbreaking” at the time, her work “transformed how autism was understood in the UK”, said Aimee Grant on The Conversation. Previously, autism had been seen as a “rare, narrowly defined condition”, whereas since a “wide range of traits and experiences” have been recognised.

The introduction of new terms to categorise the spectrum is not without precedent. Wing also introduced the term “Asperger’s syndrome” to the UK. It was intended to divide or categorise patients depending on their care needs. Individuals with Asperger’s tended to have lower support needs.

However, the term was “retired” in the 2013 edition of the Diagnostic and Statistical Manual of Mental Disorders following revelations about Hans Asperger’s links to the Nazi regime, said the National Autistic Society. He was responsible for “abhorrent descriptions of some autistic children as being less ‘worthwhile’ than others”, and “more recent research” has shown that Asperger “was aware that he was sending children to their death”.

Why is the new definition needed?

Having a more specific category in future clinical guidelines could allow governments, disability services and clinicians to plan and deliver support more effectively, said Boulton, Hodge and Sutherland on The Conversation. Due to the broadening of the current spectrum, it is possible that people with the highest needs are “overlooked”, so the new category would “re-balance their under-representation in mainstream autism research”.

Current understanding of an autistic spectrum ranging from “mild” to “severe” can be “misleading”, said Grant. “The term has outlived its usefulness.” The condition has “lots of unique combinations”, including reliance on routine, “stimming” or “monotropism”. “Because autism is made up of all these different elements, there can be no single line on which every autistic person is placed.”

What are the arguments against it?

However, some experts would say the new category is “unhelpful”, said Grant. “It tells us nothing about a person’s particular challenges or the type of support they require.”

Some autistic self-advocates see “unity as the best protection for everyone on the spectrum” and being “part of one shared story”, said Forbes. Similarly, some people in the autistic community fear that creating a separate diagnosis would “reduce attention on the broader spectrum and the individual needs of everyone on it”, said The Independent.