ASD 'levels'

With the DSM-5 in 2013, came ASD 'levels'. I wonder what other clinicians have made of this 'innovation' from the American Psychiatric Association.

'Requiring support', 'requiring substantial support', 'requiring very substantial support'. How do these descriptions fit in to current scientific or clinical understanding of autism? Or of psychology generally, or of child neurodevelopment?

To me they don't seem to fit at all. Autism remains poorly understood. A historical barrier to better understanding has been the assumption that autistic people lack intelligence, empathy, an emotional life, or anything to contribute to society. A more enlightened view has only developed very recently. To me it seems that autistic people who are now happy and successful adults, and can finally tell their story and have it heard - they've played as big a part in the tectonic shift in its conceptualisation, as any celebrated clinician or researcher.

One view on early child development is that it is based around the transmission of a society's culture to a young child, initially by their parents and other close adults. And soon enough by a broader range of sources. The meaning of 'culture' here is very broad, encompassing not only social customs, but knowledge about the physical world, 'folk psychology', and understanding of the emotional life of oneself and others.

A related perspective on the struggles which many autistic children face, is that they are just as intelligent, compassionate, and complex as any other human individual. But that for a number of reasons, they don't naturally, automatically, 'receive' the prevailing culture which those around them would otherwise (largely unconsciously) transmit to them. Modern experience shows that if the environment and interactions of an autistic child can be supported and modified in a way suited to their particular strengths and challenges, they do very well.

But how well this support and modification is done, by an adult in the hot seat, varies enormously in reality. This is partly due to the very powerful force of cultural conformity - some adults might never accept that there are many different but equally good ways to live one's life, outside the way they happened to be born into. An example of this is negative reactions, in our society but not all societies, to young kids who won't make eye contact with newly met adults.

But even well-intending adults may need to take on a lot more knowledge, in order to make things work for an autistic child in their charge.

What this means is that the question of how much support an autistic child 'requires', in reality depends as much on the knowledge, beliefs, and actions of the adults around them, as it does on the individual makeup of the autistic child. 

Why would the APA introduce such a conceptually flawed definitional layer, over what is already an increasingly incoherent construct? Why do so many Australian clinicians and professional bodies follow its lead, like the children of Hamelin?

I'll suggest an answer to just the first question. These 'levels' look to me to have been created entirely for the convenience of large funding and service bureaucracies. In the US that's health insurance companies, HMOs, or whatever they're called now. Enormous, quasi-private corporations. How handy that any non-clinical corporate worker can receive a documented 'level' of severity for each autistic child, for whom their job is to ration services. The levels don't have much clinical meaning, but they'll look good on paper.

The question of why so many Australian clinicians and professional bodies have meekly fallen into line is harder for me to fathom.

Perhaps a reader of this blog post might hazard an answer?

Further reading:

Frances AJ, "DSM-5 is guide not bible - ignore its ten worst changes" (2 Dec 2012) Psychology Today. https://www.psychologytoday.com/au/blog/dsm5-in-distress/201212/dsm-5-is-guide-not-bible-ignore-its-ten-worst-changes
Prof Frances is a prominent voice of reason on the DSM, has a big Twitter presence, and is an absolute legend.

Silberman S, "Neurotribes" (2015) Penguin Random House.

Grandin T, "Thinking in Pictures" (1995) Penguin Random House.


Further reading, on 'cultural transmission':

Vygotsky LS, "Thinking and speech (1934).  https://www.marxists.org/archive/vygotsky/works/words/Thinking-and-Speech.pdf

Bruner JS, "Child's talk" (1983) WW Norton.

Tomasello M et al., "Cultural learning" (1993) 16 Behavioral and Brain Sciences 495.