Friday, 8 December 2023

Time to move on from last century? How to reframe diagnostic criteria for autism?

 

Silhouettes of the head and shoulders of people, in different colours.

The first autism research was arguably carried out nearly 100 years ago, by Grunya Sukhareva (1926). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5696677/  Later, autism was redescribed by others.


Since then, research teams and publications have often laboriously copied out those initial misunderstandings about autism.  They appear in text after text, paper after paper.  And, arguably, diagnostic manual after diagnostic manual.

Research in the last few years has uncovered a veritable treasure trove of new information about autistic people.  About autistic diversity, about strengths as well as areas needing support, about honesty and integrity, and so much more. We know so much more, also, about autistic sensory differences, social communication differences and strengths, and the ways that society benefits from each and every one of us.  The field has expanded from a niche medicalised 'disorder' to a wealth and depth of nuanced, thought-provoking information, stretching throughout contributions to arts, philosophies, humanities, literature, faith & spirituality, and so much more.  

The diagnostic texts continue to lag behind. An example can be found at https://www.cdc.gov/ncbddd/autism/hcp-dsm.html and shows us as a relentlessly long list of deficits.  Not a hint of modern research has touched its pages as yet, it would appear.  Nor is there a hint of the contributions that some autistic people have made to our society.  In research paper after paper, we appear only as burdens on society, as things to be cured, and sometimes, horrifyingly, as some object that is barely human.   What a disaster.

So, what would diagnosis look like, if we put in the newer research?  I've spent decades amongst so many hundreds and thousands of fantastic autistic people, discussing this.  The slides below are informal, based on those many discussions and on the newer research, much of which is linked at https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html.  The pictures below are ones I use as my own 'thinking points'.  But they serve a purpose, as a discussion-point for us all.

There's an old saying - that if you keep doing the same thing, and it keeps going wrong, something needs to change.  Well, we've spent 100 years breaking too many autistic people with the crushing load of total negativity, every day of their lives.  Can we change the narrative and learn to rebuild some lives instead?

I put it to the diagnostic communities that they are wise to work collaboratively with autistic people of all kinds, and read the modern research information thoroughly.  Especially that which shows so clearly that every autistic person benefits from a more positive, kind, respectful framing of our differences, and our support needs.

I'll look forward to discussing things further, on social media elsewhere.


Autistic people must match each of these three areas of social communication difference, and also at least two out of four types of focused behaviour: [not shown on this slide] a) Differences, throughout life, in social communication and social interaction across multiple contexts: Differences in social approaches, often with longer information-giving rather than back-and-forth conversations. Social ‘chit-chat’ is often minimised or absent, to avoid social and sensory overload. Differences in body language, face expression and use of eye contact. Often eye contact is sparse or non-existent, again avoiding social or sensory overload and often enabling better listening. Differences in relationship development, for example commonly enjoying friendship and relationships with some other autistic individuals, but finding it very difficult to adjust to nonautistic ways of expressing friendship and relationships. Misunderstandings from nonautistic indivduals are often common and there may be a long history of experiencing anger or ostracism from others, seemingly for no reason the autistic person can discern.




Autistic people have differences in behaviour, interests and activities. At least two of the following must be matched, to get a diagnosis: Use of movement or sound in repeated ways. This is often used to help regulate and focus. The person may take great joy from pattern, colour, or form, and build their learning about the world from repeated deep study of a particular object or pattern, for example. They may learn spoken language by using words or phrases repeatedly, and use language in ‘short-form’ ways that minimise sensory and social overload for them and for other autistic individuals. They may need deep certainty about forthcoming events, to minimise social and sensory overload and to aid concentration and planning. It can be of great assistance to them to use particular set patterns of eating, or greeting, for example. Sudden change can be overwhelming. Autistic people often have a very deep focus on hobbies or interests, one that can lead to great specialisation and expertise for some. This may be lead to areas of expertise that are uncommon in the wider population, or to a greater sense of relaxation and joy. They may have sensory processing differences that impact on everyday life, or which provide particular comfort and quality of life. There may be either hyporeactivity or hyperreactivity to e.g. pain, temperature, sound, texture, lighting types, smells or tastes, often sensing things imperceptible to nonautistic individuals.




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