There is growing demand 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. The addition of a “profound autism” category was first proposed in 2022 by a board of international experts in The Lancet.
Those who support the idea think it could bring welcome extra support to those who require it most, but critics 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 neurodevelopment experts Kelsie Boulton, Marie Antoinette Hodge and Rebecca Sutherland on The Conversation.
In their study of 513 autistic children assessed between 2019 and 2024, they found that around 24% met, or were likely to meet, the criteria for profound autism.
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 the research trio. Recent broadening of the current spectrum means it is possible that those with the highest needs are “overlooked”, so the new category would “rebalance their under-representation in mainstream autism research”.
Current understanding of an autistic spectrum ranging from “mild” to “severe” can be “misleading”, said public health professor Aimee Grant on The Conversation. Autism is made up of many different elements, so “there can be no single line on which every autistic person is placed”.
What are the arguments against it? Some experts say a new category would be “unhelpful”, said Grant. On its own, “it tells us nothing about a person’s particular challenges or the type of support they require”.
Some advocates in the autism community see “unity as the best protection for everyone on the spectrum” and value being “part of one shared story”, said Forbes. Others in the 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. |