Empowering neurodivergent people through understanding and conversation
Off the Spectrum
A little over 100 hundred years ago, the term “autism” was first used to describe an aspect of schizophrenia. What we now know were autistic children were diagnosed at the time as schizophrenic. Previously, autistic people were considered to have dementia, or “developmental retardation”.
In the 1930s and 40s, scholars began to appreciate that autism and schizophrenia were actually distinct from each other – though both still considered to be psychiatric conditions.
It took until the 80s for this to be formalised and separated in the DSM (Diagnostic and Statistical Manual of Mental Disorders). Asperger syndrome was added to the DSM in the mid-90s; and only 10 years ago, Asperger syndrome, autism disorder, CDD, and PDD-NOS, were merged into the same category “Autism Spectrum Disorder”, with three Levels of “severity”.
And there began another chapter in the massive misunderstanding of autism.
The Spectrum
The word spectrum, in the context of autism, is supposed to refer to the variety of presentations and traits possible within the umbrella of autism. Instead, combined with the misleading Levels in the DSM, many people have been lead to believe that this spectrum instead represents a range of severity. That people can be “a bit autistic” through to “very autistic”. A Level 1 through to Level 3.
Not only is this wildly inaccurate, but it is hugely damaging to the autistic community. Furthermore, it demeans people with higher support needs by implying they are incapable in all areas, and denies support (or even questions neurotype!) for those with low support needs who may still struggle significantly in some areas.
Spiky ProfileS
Instead of thinking of autism as “a little bit” through to “very”, imagine a circle.
Around the outside of the circle, list all the traits, skills, and behaviours, you can think of.
Things like:
- Preference for using eye contact
- Imagination
- Mathematical ability
- Information processing speed
- Sensory seeking
- Sensory avoidance
- Trust
- Ability to read
- Gut health
- Hyper mobility, etc
On a line between the centre of the circle and the word on the outside, place a dot. Closer to the centre if your person isn’t great at it, or doesn’t display it. Closer to the outside if your person is excellent at it, or demonstrates this behaviour.
Working your way around the circle, join the dots together.
What you will likely see, is a misshapen, varied, star burst.
This is what autism looks like. A collection of talents and difficulties. Not a checklist of autistic traits, where if some are ticked they’re at one end of a spectrum, and if most are ticked they’re at the other.
The Levels
While the Levels in the DSM can be perceived as well-intentioned, there is a lot about them which is disliked by the autistic community, and seen as detrimental and offensive.
The fact that they are referred to as a “Severity Level” in the first place isn’t a great start. Autistic people don’t tend to consider their neurotype as more or less severe, based on how much they need support from others. For autistic people it’s more about how it feels to them, and this is not acknowledged by the DSM.
The three levels are supposed to represent someone “Requiring Support” (Level 1), “Requiring Substantial Support” (Level 2), and “Requiring Very Substantial Support” (Level 3). Unfortunately, it then elaborates upon profile traits in the areas of Social Communication, and Restricted, Repetitive Behaviours.
A Level 3 person, for example, should experience great difficulty changing focus or action. But being able to speak in full sentences makes them a Level 1. None of the levels cater for people who are able to easily make friends! So what happens to someone who is kind, social, communicative, but experiences hyperfocus and experiences meltdowns when people interrupt at the wrong moment? Are they a Level 3, or are they not even autistic? It doesn’t work.
Levels can be beneficial for accessing funding, such as the NDIS, to indicate which autistic people are most likely to require financial support for external supports. But the current Levels work along the lines of “low functioning” through to “high functioning” which is no longer accepted terminology or theory in most neuroaffirming circles.
The Future of Autism
The DSM-V (the current edition of the DSM) has text revisions, updating some aspects of it, but there is no current plan for a DSM-VI. That means the vast majority of information in the DSM regarding autism is at least a decade old, and in the scheme of neurodivergence that is practically ancient. It’s 10% of the lifespan of autism as a known neurotype. 40% of the time since professionals figured out that autism and schizophrenia weren’t the same thing. It’s 100% of the time since they stopped defining people as having Asperger Syndrome!
These days autism is considered more and more to be a neurotype, opposed to a condition, a disorder, or a syndrome. Many autistic people perceive it simply to be a difference. A brain that interprets information and the world around us differently to allistic brains. As simple as blue eyes instead of brown eyes.
Many don’t feel the majority of neurodivergencies should even be in the DSM anymore, as they aren’t all something to be treated or cured. Yes, an autistic person experiencing anxiety can be treated for that anxiety. A depressed autistic person can be diagnosed and treated for depression. But autism itself is not a problem, so should it be in a book of disorders?
Perhaps it best belongs in a psychology textbook, explaining neurodivergence, and describing traits of different neurotypes.
Hopefully one day autism will be removed from the DSM, and people will be assessed by their medical professionals as to what their needs are, and this will make them eligible for funding and support. Not an inaccurate, outdated diagnostic manual which pigeonholes autistic people as capable vs incapable, non-verbal vs not deserving of help, disordered, or broken.
So What is Autism if Not a Disorder?
Autism is fluid. Abilities fluctuate based on endless variables. Skillsets can grow or disappear. Presentation can change in different environments. A difficulty or inability in one area does not indicate intelligence or abilities in other fields. It is a diverse, changeable, spiky star burst of a profile; each one different, unpredictable, and special.
It’s time to get off the spectrum, and look at the stars instead.
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