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'Profound autism' does not exist - rather there are autistic individuals with PMLD / PIMD

Updated: Nov 15, 2023

Profound Autism?’

Language matters, but it is complicated and there are constant changes of vocabulary and what is deemed as "correct" or inline with best practise of the time, particularly in education and health care. Earlier this year Emily Ansell Elfer (Feb 2022) shared the news that the phrase ‘Profound Autism’ had been ‘officially recognised by Autism Science Foundation. The article continues, ‘The new Lancet Commission report has formally recognized the need for, and endorsed the use of, the term “profound autism” for the first time in a peer-reviewed medical journal.’

I recently read an article by Alison Singer, ‘Opinion: It’s time to embrace ‘profound autism’ (27.10.2022, Spectrum News). This made me question the appropriate use of the term ‘profound autism’ further. I have spent my whole career working with those who have profound and multiple learning disabilities (PMLD) / profound and intellectual and multiple disabilities (PIMD). Also, from my personal perspective of being late identified autistic, I have recently begun questioning the use of language around disability further to support my own learning journey around my autistic identity. I believe that those described as having ‘profound autism’ are autistic individuals with specific needs needing significant support. Everyone is an individual, everyone has their own specific needs. For autistic people with profound intellectual and multiple disabilities these needs are highly complex and may require a constant high level of care and support every day and night of their lives for many different reasons.

Autistic with Profound Intellectual and Multiple Disabilities Singer’s article described people as ‘having Profound Autism,’ this implies that their autism is more ‘severe’ than others. However, I would argue that there is no meaning in this or in ‘high and low’ functioning labels, these labels can be seen to be highly damaging and inaccurate. It is not autism itself that is high or low functioning, severe or having varied ‘levels' rather it is a persons specific needs may need more or less support in an area or at certain times. Autism is not an illness, it does not need 'fixing', rather it is a difference of experiencing and responding to the world. My core understanding of neurodivergence is in line with many autistic researchers and advocates such as Kieran Rose and Luke Beardon who state that you cannot 'have autism', rather people may be autistic, they may have a difference of neurotype to the neuromajority (predominant neurotype or whichever other term you use). Autism is not a physical illness, it is not a mental illness, there is no cure, it does not need ‘fixing, or need any interventions' but autistic people may still need support and a more accommodating environment.

‘Autism + Environment = Outcome'

Luke Beardon argues that ‘autism plus environment equals outcomes. That outcome might be positive or negative, but the person who is autistic remains the same; it is the environment that leads to the outcome. So, if you want a successful outcome, and you recognise that an autistic person cannot change their brain, then the only thing you can change is the environment. And that often, but not always, means the people within that environment.’ In my future blog articles, I will discuss how there is now a developing argument against the idea of a dominant neurotype. Dr. Nick Walker disagrees with the essentialist idea of ‘neurotypes’ arguing that ‘neurotypical means conforming to prevailing standards of neuronormativity. The idea that there's a "neurotypical brain" is a misinterpretation of the original intent of the term.’

With regards to those children who are autistic and have profound intellectual and multiple disabilities, they have very specific individual needs, they both often require a team of specialised multiagency professionals to collaborate with them and their families to meet these needs. More importantly, they require an even deeper understanding from the key adults in their lives to enable them to experience and have a life that is as meaningful and rich as possible, not just meeting needs but allowing them to live a full life and develop meaningful relationships and to thrive. Autistic children / autistic parents It is important to emphasize that to effectively meet the needs of any autistic individuals, teachers and other professionals (who are not neurodivergent), need to understand that if children are autistic (or any other neurodivergence) then it needs to be taken into consideration that their parents may be autistic or neurodivergent too. Studies show there is around 83% heritability between autistic parents and autistic children (Sandin 2017) . This is significant and needs to be considered; for effective communication and meaningful collaboration between everyone it is essential that this is explored and understood.

The value of the word ‘profound’ In Emily Ansell Elfer’s article, Mark Blakely (CEO of Autism Magazine) acknowledges the outdated terms of high and low functioning as being offensive and hopes ‘Profound Autism’ will be well received as a term moving forward…thinking it could be a more respectful way of describing people who require significant support.” In response, I would say that this gap in misunderstanding is contributing to the stigma and difficulties that arise by using functioning labels. Sue Fletcher Watson argues in her article 'It's time to embrace autistic expertise' 'that the ‘main concern with the perspective laid out in this article (Singer) however, is how much of a missed opportunity it represents. There is so much to be learned from autistic people who can describe their inner experiences, and thereby help the rest of us better understand those who are less eloquent.’

This concept was also emphasised by Joanna Grace in our recent discussion about terminology (see previous my blog 'A reflection on the use of the word profound in relation to Autistic people').

Although on the surface the term ‘profound autism’ may sound sympathetic to the needs of the people they are advocating for, it is damaging. Autistic people with profound and multiple learning disabilities and health needs are not ‘Profoundly Autistic,’ they are autistic with specific needs, often multiple, and disabling needs that may fluctuate and affect different areas of their lives at different times. Sue Fletcher-Watson responded to Alison Springer’s article a day after it was published ‘It’s time to embrace autistic expertise’ and Ann Memmott also swiftly responded in her article’ I am not a fan of creating a ‘Profound Autism’ category’.

I agree with both Memmott and Fletcher-Watson and specifically support Fletcher-Watson’s thought that the term ‘Profound Autism - also denies the existence of the millions of Autistic people who sit between two purported extremes, and the variability in support needs for any individual, across settings and stages of life.’ No one is on a linear path in life and when we start think of those people with very complex and profound health needs and learning disabilities it is essential that we are specific as to what those needs are. Dr Amy Pearson responded to Memmott on Twitter by agreeing that, ‘Calling someone profound won’t change that - better training, more funding into support, research that meets the needs of ALL autistic people might.’ (Dr Amy Pearson 28.10.22 Twitter).

Need for Re-Education

For professionals, parents and carers who are working or living with Autistic people with PMLD / PIMD it may be difficult to understand where one diagnosis, condition or need ends and another starts; everything impacts on everything else; it is profoundly complex. This is because there is no start or end, there isn’t for any of us, regardless of differences of neurodivergence, any possible medical condition, intellect, disability, or any other need a person may have. We are all unique individuals with varying specific needs that can only be met within the right environment and with understanding, caring people around to support and meet those needs.

Re-education and a change of perspective needed

I do sympathise with those families who may feel that their loved ones, who do not have the ability to advocate for themselves and are already severely marginalised, that removing the labels of high / low /severe / profound in relation to autism is devaluing the true extent and the severity of their complex care needs. However, I would argue that this issue needs addressing through re-education and a change of perspective.

Being autistic your bodymind has a different way of processing and responding to people and the world around you to non-autistic people. Autism is fluid, needs fluctuate, sometimes profoundly.

This article has explored why I feel the term 'Profound autism' does not exist.

In the context of autistic people with profound and multiple learning disabilities they are some of the most vulnerable people in society and are often dependent upon the care and understanding of others to live their best lives. Autistic people with profound and multiple needs are often misunderstood and underrepresented, these are the individuals that need even more understanding and support. Creating further categories such as 'profound autism' is not helping anyone; it is creating an even larger division and more barriers between already stigmatised and marginalised groups and also means their specific needs may not be met and they won't get the support they deserve. We don't need more labels we need to develop a better understanding to create a more accepting and inclusive society so people are understood and can individual needs can be met.

*Article written from my lived experience as a parent and teacher. Knowledge gained through various personal research and neurodivergent communities.

Autistic Realms is a space for parent support and teacher guidance **


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