New diagnosis of Profound Autism?

Greetings Earthlings! 🙂

There’s been a lot of talk in the news this week about potentially revising the autism diagnostic criteria to include a separate diagnosis of profound autism. The medical journal ‘The Lancet‘ recommended this diagnosis in 2022 to account for the estimated 24% of autists who:

• Are 8 years and older
• Have an IQ of less than 50
• Have little to no language skills
• Require 24/7 care

The diagnosis was proposed to help adequately support more severe cases of autism as the current 3 level structure is too broad and autists are often overlooked in research and services. As I discussed in my previous post on the subject, the spectrum is divided up into levels 1, 2 and 3 classified into requiring support, requiring substantial support and requiring very substantial support. As a result, the broad definition has made it difficult to classify adequate support services for profound autism where some autists meeting the criteria got lower support levels, and some who did not meet the criteria got the highest support.

Many people are welcoming the proposed revision, however, others are concerned that the age threshold will place additional burdens on families. 90% of autists are diagnosed before the age of 8, leading to repeat assessments to confirm a profound diagnosis when the autist reaches the age threshold. Moreover, families would be placed in limbo without the full support they need while they wait for an official confirmation.

In my view, this is a step in the right direction. For many years I have been lamenting the fact that the spectrum needs to be reclassified- but not with regard to the lower levels of the spectrum. I was initially diagnosed with Asperger’s syndrome round the time of the reclassification and broadening of the spectrum. While once a separate diagnosis with distinctive characteristics, it was subsumed by autism level 1 in 2013 following revelations of Hans Asperger’s Nazi affiliations.

As a result of this broadening, it has effectively narrowed public perception of higher functioning autists abilities. Asperger’s once implied a certain level of functioning bringing to mind the “little professor” persona. However, the word “autism” conjures the image of someone with serious sensory issues, who requires ear defenders and stimming toys (just look at Barbie). While visibility is very important for autists, this kind of negative stereotype gives the public a bad perception of higher functioning autists, which can be damaging if a diagnosis is disclosed when seeking employment. I have met some other level 1 autists over the last while, and find it astounding that we are the same on paper. Our functional levels and support needs are so far apart there should be an autism level minus 1 to separate us.

All in all, this is a positive move that this new diagnosis is being considered, but 13 years on, we need to revise the entire spectrum. Waiting lists are haemorrhaging, diagnoses are at unprecedented levels (they’re as high as 1 in 17 in Northern Ireland vs 1 in 83 in 2008), and supports are spread thin and often misallocated. A revision of the spectrum and classification of need is an important step forward.

Hope you enjoyed this post dear Earthlings! 🙂

Have a lovely weekend!

Aoife