Levels of Autism

Imagine yourself. After years of not really being able to put a finger on why you find certain things a struggle, things that your peers seem to breeze through, and after months, or years of awaiting a diagnosis – having probably picked up a number of others that didn’t quite fit along the way – you are told. Finally someone tells you, You’re Autistic. Brimming with the empowerment of these words to explain your experience you annuonce to the world (via twitter), I have “Level I Autism!” Only to be shouted at by your autistic bretheren; You’re getting it wrong. We don’t talk about levels here. Deflated, and bruised you wonder to yourself, Where do I belong if even being here feels spikey?

DSM-5

The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders was published in 2013. The latest edition of this having been published in March 2022. Before thinking about what it says, and what that means, it is worth a little think about it’s history and why it exists. We might also like to think about some of the “disorders” it previously listed, and what happened to them in the longrun. Spoiler: they are not thought of as disorders anymore.

In many countries, the late 19th and early 20th century marked an increasing shift towards institutional housing for those with mental disturbance. In the US, this centred on housing and care of “idiots” and the “insane”. With the explosion (no pun intended) of institutions following the second world war – presumably in part due to the trauma experienced by European diaspora, veterans and surviving being “the greatest generation” – the need to categorise the sort of illness people were suffering, in order to appropriately account for their support needs (and by account I really mean in a fiscal sense) the DSM was published.

The DSM, along with the WHO publication, the ICD-11, continue to be the “bible” – if you will – for the categorisation of illness. The desire to categorise – being a highly autistic type of behaviour – is not alien to any autistic scientist. Indeed, in modern history it can also trace its roots to the 1866 Cholera epidemic in London, which has resulted, in UK, in the Office for National Statistics, and our amazing, joined up data networks relating to health. But I digress. Considerably. So, the DSM is about fees, and treatment. It is wholly based on a medical model. And even then, an archaic version of the medical model which marks out deviations from the “norm” as ‘disordered’. A more modern interpretation being that deviation from normal/usual/average is more likely simply “difference”, as opposed to the loaded term “disorder”.

Diagnostic language

Terminologies and language matters. But language is, perhaps, a cultural phenomenon. Or at least, is a phenomenon affected by culture. By the sensibilities of the times. Why we no longer call people idiots, morons and imbeciles in medical care. In fact, the DSM-5 removed “Asperger’s” from its pages. In part, perhaps due to the questionable associations of its eponym, but mostly because this subdivision was not necessarily helpful. However it replaced these with a set of levels. The levels no-longer mapping to intellectual capability, but to functioning. And, in the 9 years since its publication, toward support needs.

via VeryWell / Cindy Chung

Level 1 today, Level 3 on Wednesdays but Level 2 on Tuesdays and Saturdays

As many autistic people can attest, functioning and support needs can vary. They can change day-to-day, month-to-month or lifephase to lifephase. In my practise as a GP, I have seen (previously undiagnosied autistic) people whose functioning has collapsed due to the illness of a partner, due to their own illness, or when their mental health has deterioriated for other reasons. We really grossly under identify autism, because until you aren’t doing something that gets you along in life, we all – society, individuals, family, health, education, all of us! – ignore it. Except it really doesn’t go away. It is like a piece of grit in your shoe that can impact on outcomes, whether you’re diagnosed or not.

Which circles us back around to the diagnostic criteria. The medical model is always only looking at things as abberations from “the norm”. By doing this, we miss such a lot of autistic people and we overlook their difference, the differences in the biology of their bodies and the enormous contribution they may to society – whether their support needs are very little, or very much.

The Future

Well, sadly, the future looks – at best – mixed. We have a wide community of advocates, activists and researchers who are autism positive, autism affirming and who don’t see us as puzzles to be solved or broken things to be fixed. They are our wider community (because we are everywhere, friends), who find us fascinating and who want to improve the lot of all autistic people everywhere. Whether in their health, their education, work-lives or relationships. But then there’s those who seem stuck on curing us of our autism. Of obliterating it – of obliterating us, and all the myriad wonderful things we do in the arts, comedy, science, literature, government, health… the list is literally endless. I refer you to history to determine which side of that arguement you would wish to be on.

Those who write the manuals, and diagnositic criteria, are finding amongst their number, people described on those pages. Or, perhaps like the legendary Robert Spitzer, find themselves defined in a way they know to be erroneous. This is leading to a redefinition, and, hopefully, a softening of the language towards one that is more appreciative of the matter of difference – not disorder – to be found in those who are neurodivergent. But sensitive to the areas of life – and health – where this difference can require a different approach.

Words of Welcome

So what about our community and how we welcome those who use the wrong words? Well, it’s kind of tricky. As an autistic person myself, I could constantly correct people who say “neurodiverse” when I think it would be more correct as “neurodivergent”, or I could say, Welcome. Welcome to the conversation. Welcome to our community.

I find it just as hard as anyone else to bear with the people who make mistakes. But I am willing to give a bit of benefit of the doubt. Repeat offenders do not get the same lattitude, and I have some red lines (I’m not “with autism” people!) But this levels business is a political and cultural thing. Let’s not castigate our own when they’re at the begining of learning this culture we have here. Hopefully the medical world will catch up. And there’s a lot of us inside it lobbying to make it different for everyone else.

Thanks for reading. Your friendly, neighbourhood, secretly autistic (very occasional) GP. x

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