My thoughts on the current movement campaigning for 'Profound Autism' to be a recognised diagnostic term..

Over the years, I've come to absolutely dread April and World Autism Acceptance/Awareness Month. 

It should be a time for the autism community, which includes non-autistic caregivers and autism professionals, to come together for the better of all autistic people - but so often social media is filled with fighting between parents of care-dependant autistic children (with co-occurring, significant learning and/or communication difficulties), and higher-masking autistic people (without a significant intellectual disability, and able to live more independently).

Both communities are seeking acknowledgement and validation from the other.

Autistic people in my part of the autistic community often feel reduced and ignored in terms of the support we desperately need for better diagnostic provision, better mental health support and affirmation from society. We feel that we're being told our needs aren't a priority, and that's upsetting when our community are dying by suicide  9 times more often than others (Autistica, 2016). We are defensive.

Parents often feel reduced and ignored as well. Having spent some time in the socials of those parents, I understand that they feel like the 'voices' of adults like me are 'diluting' and setting back awareness of their families' challenges. There's concern about their children and families being left out of research (McKinney et al. 2021) and funding provision. Autistic children in these families are so much more vulnerable to dying from epilepsy (Autistica, 2016) and accidents (Guan, J., & Li, G., 2017). They are defensive.

The use of preferred terms and language is often the 'fuse' that starts the fighting on social media, and in the press, and one such term is 'profound autism'.

'Profound autism' is a term that doesn't exist diagnostically, but many parents of autistic individuals who are care-dependant have been actively campaigning for it's recognition to describe their children.

Unfortunately, in my view, the term has been formerly proposed as an administrative term, in an article published in The Lancet (Lord et al., 2022). This in-turn encouraged the groups advocating for it's use without, in my opinion, understanding the nuance of why the term is potentially damaging and misleading to most.

The Lancet article proposed that 'profound autism' describes those autistic people:

• with an IQ less than 50
• and/or are minimally speaking or not speaking to communicate needs and thoughts at all

Importantly, and I feel like this is an obvious argument for not sanctioning the term, the article also said.

• profound autism is thus defined not by autistic features

I know I'm ultra-literal, but when you put 'profound' as a descriptor before autism, won't most people interpret that as meaning that the autism element of 'profound autism' is more extreme or intense?

It's adding another layer of confusion for the non-autistic community, and huge potential for the misunderstanding that 'profoundly autistic' people are somehow 'more autistic' than 'non-profoundly autistic' people, leading to all sorts of incorrect assumptions being made about the support needs and challenges of either community. To me, it's a no-brainer that all this does is further disadvantage both communities of autistic people and their families.

Another point that was made in The Lancet article was that;

• The word profound was selected because it is less commonly used colloquially than severe, and the term low-functioning is disliked by many.

Kripke-Ludwig (2023) puts it really eloquently, but why go to the trouble of acknowledging that the term 'low-functioning' is disliked by many, and then not check to see, or critically think about whether 'profound autism' is problematic?

I'm generally in agreement that if we can find some snappy way of saying 'autistic with significant intellectual disability that means there is substantially low, or no, potential for independence at any time from care givers', then we should.

I want that for the caregivers most of all, who really do come under attack from my part of the community when they use the only problematic terms that they currently have (see all of the reasons above as to why it's problematic).

I appreciate that I'm massively oversimplifying here, but we are all fighting in different spaces for different things. I personally feel 'high-masking autism' really fits my part of the community well. Perhaps 'Minimally or non-speaking autism' describes those autistic people who can communicate non-verbally or with AAC?

Non-speaking autistic people's priorities may be funding for speech therapy, if appropriate, and/or assistive tech and affirmation by society. High masking autistic people's priorities may be funding for diagnostics and specialist mental health provision, as well as affirmation by society. Care-dependant autistic people and their families may prioritise funding for care, research, and affirmation of family caregivers by society.