Understanding the ‘Spectrum’ in Autistic Spectrum

One of the most common misconceptions I see about the autistic spectrum is the idea that a spectrum must cover all people. I’ve seen variations on this statement appear in several places:

“Everyone’s a bit autistic, that’s why it’s called a spectrum.”

People who make these sorts of comments seem to think that the autistic spectrum measures everyone’s ‘degree of autism’ on a scale from not at all autistic to totally autistic, and so everyone’s somewhere on the spectrum.

The Autistic Spectrum? [A gradient from white to grey, labelled '0% Autistic' at one end and '100% Autistic' at the other]

This is not what ‘autistic spectrum’ is meant to mean.

In fact only autistic people are on the autistic spectrum. If you’re ‘on the spectrum’ then you are autistic (or ‘have autism’, whichever is your preference), it is a spectrum of the people who are autistic. Not autistic? Not on the spectrum.

We say that autism is a spectrum condition because there’s a huge amount of diversity among people who are autistic, so it’s more helpful to consider autism as a wide range of different experiences rather than taking a single one-size-fits-all approach.

The cliche is that when you’ve met one autistic person then you’ve only met one autistic person, and there’s a lot of truth in this. It’s surprisingly easy to find two people who are both autistic but have astoundingly different traits, personalities and communication styles. In fact I’d go as far as to say that you’re more likely to find these extreme differences in a group of autistic people than in a similarly sized group of non-autistics.

Jelly beans of all different colours
Image credit

Instead of imagining the autistic spectrum like a scale, think of it like a spectrum of colours. All the colours are on the spectrum, regardless of where they appear in the rainbow, but they can look very different to each other.

Some colours go well together, while others clash. Some colours blend in, while others stand out. Which colours are most visible depends on the observer and the lighting conditions.

Some colours we have words for and you’ll find them in every box of crayons, while some are in-between colours with names like ‘yellowy greenish colour’. The important thing is that, despite being hugely diverse, every one of the colours in this spectrum is as much a colour as any other.

Now we’re talking about colours, perhaps your mental image of the autistic spectrum looks like the spectrum of visible colours, but maybe, rather than labels like ‘Red’, ‘Yellow’ etc, perhaps you’ve labelled them with diagnostic terms like ‘Asperger Syndrome’, ‘Kanner Autism’, ‘High Functioning Autism’ etc.

The Autistic Spectrum? [The Visible Light Spectrum labelled
(If you don’t know what you’re looking for, you might mistake the fringes of the visible spectrum as colourless rather than blending into ultraviolet or infrared, that’s why I put PDD-NOS at the opposite end to Asperger’s – sorry for over-thinking the analogy!) Visible spectrum image credit
However, these types of separate, defined diagnostic terms aren’t actually all that useful because they suggest stereotypical patterns of behaviour and both similarities and distinctions between arbitrary groupings that aren’t really there. In practice they’ve been found to make it harder to recognise autism in many individuals, and to do useful research about the spectrum. Because of this they’re being phased out, replaced with either ‘Autism’ (as is more common in the UK) or ‘Autism Spectrum Disorder’ aka ASD (as is already the single label in America).

Maybe when you think of your idea of the autistic spectrum you place people on it in different positions in the order that you consider to be most ‘severe’ or most in need of support, or perhaps to correspond with how visible and detectable their autism is.

But the other important thing to remember is that there isn’t any one factor in autism – it’s not a single trait of ‘autisticness’ but a collection of different traits that affect different people in different ways.

Yes, it’s possible to rank people in terms of who is most visibly autistic (by some standard) or who currently needs the most support to function in society (by some standard). And yes, there are sometimes practical reasons to want to do this when budgets are tight and services are being rationed to only those who need them the most.

However, it’s important to remember that any two people who are very ‘visibly autistic’ may be autistic in very different ways, and that a grouping of the most ‘visibly autistic’ and a grouping of the most in need of support and services won’t necessarily be all the same people. Some people who you consider to look very autistic might be better equipped to succeed or cope in some situations compared some other autistic people who you perceive to be much ‘less autistic’.

The Autistic Spectrum [A colour wheel showing a huge range of possible colours in a circle, labelled 'Autistic People']
(You could also label this ‘People With Autism’, ‘Autism’ or ‘Autism Spectrum Disorder’ depending on your philosophy or preference)
Perhaps a better metaphor for the autistic spectrum is a colour wheel with every possible colour available in a circular space. The only label this spectrum needs is ‘Autistic Spectrum’ or ‘Autistic People’, as everyone on the spectrum is an autistic person.

But without labels or a scale, how do we understand what any one ‘colour’ on this spectrum means?

Perhaps then an even better way to imagine the autistic spectrum, is not just a set of colours or ‘types of autism’ but also all the different autistic traits that make up how any one person experiences autism.

Maybe that circle of colours is like a colour picker with several different sliders under it, each of which can be used to control one aspect that makes up the colour selected. No one slider on the colour picker explains the spectrum above it. The only way to fit that diverse and complex circular colour space into a linear scale is to break it down into lots of individual traits, each with their own slider. Together the interactions of all the sliders combine to produce a unique colour, and similarly all the different traits of autism combine together in different ways to create all the diversity within the autistic spectrum.

A colour picker showing the colour wheel used in the spectrum illustration followed by sliders for red, green, blue, cyan, magenta, yellow and black. A yellowish green colour is selected and each of the sliders shows a different position making up this colour
(Don’t over-think this analogy, autism isn’t really about colours! The idea to take away is that it’s not any one slider/trait that defines someone’s autism, it’s all of them in combination)

Perhaps the sliders represent the traditional ‘triad of impairments’ and the traits within that. Perhaps they represent the person’s competencies when handling different areas, such as social, sensory, verbal, nonverbal and emotional demands. Some people may have strengths in some areas and difficulties with others. Some people may be severely impaired by some demands, but competent in others. Looking at traits this way may seem like an apparently contradictory mixture of strengths and weaknesses, but this unevenness is part of the nature of autism.

Of course this metaphor still isn’t complicated enough, because there are a lot more traits that define and affect autism than there are sliders on a colour picker. There’s also the factor of how people may learn to mask certain traits by developing coping strategies (perhaps we need an alpha transparency slider?) and how traits may change with time and by situation (gradients? intersection rules?).

However, unlike a linear scale or a limited set of labels and stereotypes, this is a much better foundation to build your understanding of autism from. It shows how varying traits (that can be at different extremes or anywhere in between) combine together to produce something unique within a wide range of diverse experience, all of which falls inside the autistic spectrum. It invites you to understand that there are differences and oh so much diversity, before moving on to the commonalities.

Autism is a spectrum, remember that.

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Autistic Pride Day: Why I’m Openly Autistic

autistic pride day - june 18 - there is no cure for being yourselfToday is the 9th annual Autistic Pride Day and the first since I’ve been ‘officially’ on the autistic spectrum. Of course I’ve been acutely aware that I was different from other people since childhood, and known that I was definitely neurodivergent since diagnosed as dyspraxic in early 2007.

Pride is the opposite of shame, and that’s what pride events are about; not being ashamed of who we are. Autism is pervasive, it affects how we perceive, think about and interact with the world, and so it’s an inseparable part of who we are as autistic people. There are a lot of negative things written and said about autism so it’s important for us to push back and say that we like being who we are despite of all the challenges.

I’ve already written here about how there are positives to being autistic but I also want to say a little more about why I chose to be open about my diagnosis rather than keep it as something personal that I only shared with family, close friends, and employers or other professionals on a need to know basis.

Firstly, being open that I’m autistic makes me make sense to other people. It means that friends who’ve struggled to connect with me or assumed that my ‘mixed signals’ meant that I probably disliked them realise that there’s maybe something else going on. It means that people who previously saw me as ‘socially careless’ gain some insight into how hard I’m actually working to be ‘socially correct’ and considerate. It means that people who always saw me as ‘difficult’ might understand how stressful the wrong type of sensory environment can be for me. It means that people who might have been indirect and implicit in their communication might think twice about wording things in a more direct and explicit way. And it means that when I say that I don’t understand something, people are more likely to stop and take the time to reword it, and less likely to assume I’m joking or ridicule me.

Secondly, it means that non-autistic people who know me are aware that they know an autistic person, and that there’s more to the autistic spectrum than the stereotypes and media depictions they’ve probably learned. It means that when I write about how I experience executive function, emotional awareness, sensory overload, social interaction etc, these aren’t just seen as my personal foibles but as there being more to autism than they might have understood.

And perhaps most importantly of all, autism is a spectrum where each of us can have wildly different traits; different strengths, different challenges, different coping mechanisms and different personalities. So being openly autistic means that there’s one more example of autism visible for other ‘undiscovered’ autistic people to recognise themselves in.

I’m out and open for those people who are like I was from ages 12 to 32; aware of being different, aware of so many challenges but not aware of exactly why, not having the words to search for to find all the help and insight that’s other there. People who are working it out the hard way, struggling on their own. Those who might be aware of the stereotypes, but not of the true diversity.

As an extraverted autistic person who makes friends but struggles maintaining friendships, who’s expressive and ‘active but odd’, has poor emotional awareness but strong verbal skills, difficulty dealing with stress and terrible executive function but many coping strategies and successes, I wanted to share my experiences, share what it looks like to be me. To add to the diversity of autistic voices out there, so hopefully even one more person like me can find a word for who they are, and realise that it’s nothing to be ashamed of.