Autism, functioning labels, and we’re all on the spectrum

Many people are under the impression that autism exists on a linear spectrum, going from not-at-all-autistic to extremely-autistic (“Oh we’re all a bit on the spectrum, aren’t we?!!”). 

Autistic people are given labels that put us on a scale from ‘low’ to ‘high’ functioning. Most autistics I know aren’t that interested in the idea of lining ourselves up in order of who is the ‘most’ autistic (much as we may enjoy a nice orderly line) so effectively these labels are just a shorthand for professionals. This idea of graduated difficulties can be useful in some situations, and is essential under a medical model – for example an A&E nurse responsible for triaging patients needs to know that a broken leg is more severe than a sprained ankle. However, is it really appropriate to apply the same kind of scale to something that is simply a difference in how we are wired? Is there a risk that the use of functioning labels could mean people who are seen as ‘high functioning’ have their struggles dismissed or ignored, and people who are ‘low functioning’ are presumed incompetent and unable to communicate, when that may not actually be the case?

Many autistic people (and some non-autistic allies) are trying to move the narrative away from this binary understanding of the spectrum. This fantastic piece on The Aspergian by the author C. L. Lynch really resonated with me, and beautifully articulated things that I had been feeling but hadn’t yet lined up in to coherent thoughts. Reading this article set me going on a train of thought which has been bubbling away in my head for some time.

I have been a gigging musician for the last two decades, and as such have acquired something of a fondness for mixing desks. (I don’t think I’ve ever written such a stereotypically autistic sentence in my life…) I don’t know a great deal about them, but their array of knobs, buttons, sliders, and dials just draw me in, fascinated by the magic of the sound technician. They look so complicated, but once you understand a bit about how to use them you’ll be amazed at what a difference you can make just by knowing which button to press.

The mixing desk, in my humble opinion, provides the perfect metaphor to help us think about the autistic spectrum.

A photo of a lovely mixing desk

If we start from Lynch’s premise that the autistic spectrum can be visualised like the rainbow of the visible light spectrum, where the different attributes (colours, in the light spectrum) are actually seen as separate entities in their own right, rather than ‘more’ or ‘less’ of each other, then we can easily map each of these attributes to a channel on our imaginary internal mixing desk (e.g. channel one = red, channel two = orange, etc).

If we’re going to think about mapping our autistic attributes on to the desk in this way, we again have to be able to confidently distinguish one attribute as separate from another, rather than them being part the same linear progression of ‘most’ to ‘least’. Thankfully, the clinical guidelines can help us out here. In the latest version of the Diagnostic and Statistical Manual (used for diagnosing autism and a variety of other conditions), diagnostic characteristics for autism are grouped under two headings: 

  1. Deficits* in social communication and social interaction
  2. Restricted, repetitive patterns of behaviour, activities or interests

*some autistic people prefer ‘differences’ (but that’s probably a whole other post in itself).

Under each heading there are various subcategories and examples; in order to receive a diagnosis of autism you have to show deficits/differences in all of the subcategories under (1) above, and at least two of the subcategories under (2) above, AND these symptoms must cause you significant difficulties in everyday life, and have been present from childhood.

Let’s briefly go back to “we’re all on the spectrum”. I have had conversations with people who believe that an autism diagnosis simply reflects a quantitative difference in symptoms – so everyone has all of the same characteristics to a certain extent, and to receive a diagnosis of autism you just have them ‘worse’ than other people. This idea of a cut-off point for diagnosis (on a linear spectrum that includes ‘normal’) is simply an extension of the imaginary autism spectrum that runs from mild to severe – however it doesn’t work when you look at the actual diagnostic criteria. Yes, there is a clear requirement for the symptoms to be of significant severity to receive a diagnosis, but if that’s all that was required, then the first two sections giving specific examples of social and behavioural differences (compared to non-autistic people) wouldn’t be relevant.

So, having agreed that there are a selection of distinct attributes that are required in order to receive a diagnosis of autism, let’s map these criteria on to my mixing desk analogy. We’re going to assign one criteria to each channel (column of knobs and sliders) on the desk, but to reflect the overall headings we’re going to say that the social communication sliders are red, and the behaviour sliders are blue. 

Under the DSM criteria, the desk will look like this:

Channel 1 (red): Deficits/differences in social-emotional reciprocity
Channel 2 (red): Deficits/differences in non-verbal communicative behaviours used for social interaction
Channel 3 (red): Deficits/differences in developing, maintaining, and understanding relationships
Channel 4 (blue): Stereotyped or repetitive motor moments, use of objects, or speech
Channel 5 (blue): Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal/nonverbal behaviour
Channel 6 (blue): Highly restricted, fixated interests that are abnormal in intensity or focus
Channel 7 (blue): Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment

On the mixing desk, there is a button you can press to activate or mute each particular channel. Each channel also has a slider, which you can slide up or down to change the volume of that channel, in other words, how prominent that channel is in the overall mix.

When we’re mapping the DSM criteria on to the desk, we could extend the analogy to help us understand the diagnostic process: in order to receive a diagnosis you need all of the red channels to be active (indicating a difference in that area), and you need at least two of the blue channels active, AND all the sliders have to be set high enough to interfere with day-to-day living. (I’m simplifying, but you get the idea.)

Some people might have all the necessary channels active, but only at a very low level, so it doesn’t really affect their life. Perhaps some people might have one or two of the channels active, with the slider at a fairly high level, but none of the others. Maybe one person has one red and three blue, and another has two red and one of the blue. Under the current diagnostic criteria, none of those people would be diagnosed as autistic.

On most mixing desks there are a variety of extra knobs and buttons above the volume sliders. These allow you to change the essence of the sound, amplify (or remove) certain frequencies, and thereby change how we perceive the sound that comes out. In my analogy, I like to think of these as the extra knobs that can explain why different people can have the same diagnosis, but present in totally different way.

For example, let’s take channel 7, unusual reactions to sensory input. On my internal mixing desk, the knob for how sensitive I am to the flavour and texture of toothpaste is turned up to the max. (I am often physically sick when cleaning my teeth.) My daughter’s toothpaste knob is in the exact opposite position, and she basically eats the stuff. Also on channel 6, both of us have quite a high setting on the ‘annoyed by labels in clothes’ knob, although hers is a bit higher than mine. If we look at channel 5 (insistence on sameness) my daughter’s knobs are all turned up to 11, but mine are very variable. I like to eat the same breakfast in the same bowl every day, I have a mug I use for soup and a mug I use for warm milk and I wouldn’t dream of putting the wrong beverage into either of those mugs – and yet I frequently swap over all the furniture between rooms in my house, and I cannot abide the idea of doing the same job in the same place every day of the week for any length of time.

Of course, let’s not forget that autism is often co-morbid with other neurological and developmental conditions, such as ADHD and learning disabilities among others. So perhaps we’re adding another set of knobs on to each channel, to see how these co-morbid conditions affect each characteristic. If we take channel 5 again, perhaps my autistic need for sameness is set pretty low, but I have an ADHD drive for excitement and novelty which is turned right up. An autistic person with a learning disability might have an impairment on channel 2 which means they are not able to communicate verbally. 

This is all metaphorical, obviously, but what I want to get across is that someone who (for example) cannot talk, walk, or control bodily functions is not ‘more’ or ‘less’ autistic than someone like me: they have a different presentation of the same neurological differences. In terms of support needs, they absolutely have significantly more complex and urgent needs than I do, but describing them only as ‘more’ autistic is meaningless. It’s meaningless in terms of the diagnostic criteria, and it’s meaningless in terms of understanding how we can support them. 

Some people have great difficulty with this way of thinking, and might find it insulting that I would even think to compare myself with someone who is obviously much more disabled than I am. Let me be clear – I have no arguments that non-verbal autistics who have learning disabilities, wheelchairs, and no control over bodily functions are significantly more disabled than I am, but that is not the same thing as being ‘more’ autistic. (If you’re not sure why I’m saying this, have a look at the social model of disability.) 

We know that the autistic mixing desk has a myriad of confusing knobs, buttons, and sliders on each individual channel, so how can we possibly expect to draw like to like comparisons between people? Take me, and my friend the stereotypical-non-verbal-autistic-boy. If we chose to compare our autism based solely on the toothpaste tolerance knob of the sensory channel, then perhaps I’d come out as ‘more’ autistic? In itself, that is clearly a completely pointless piece of information, which misses a whole host of wider issues.

If we are going to focus on how best to support and help autistic (and other neurodivergent) people, we need to understand that the reality is much more complex than ‘high’ and ‘low’ functioning, and ‘we’re all on the spectrum’. We need to be looking at each person as an individual, we need to look at their own needs as a spectrum in itself. In the example above with myself and the stereotypical-non-verbal-autistic-boy, he would obviously come out with a much more complex pattern of needs than I would, and we can and should be acknowledging that, without invalidating his strengths and his potential, or my need for better dental hygiene.

I saw someone on Twitter the other day saying that if you met Stephen Hawking without knowing who he was you’d probably assume he was virtually incapable of pretty much everything. In fact, Jonathan Bryan (@eyecantalk) had exactly this problem for many years, until his family found a way that they could enable him to communicate in a way they could understand. I don’t know whether either of those people are autistic, but the principle stands – treat each person as an individual, and take the time to work out what *they* need in order to thrive. 

I hope that we can move towards a better understanding of what the autistic spectrum is, and isn’t. I don’t believe that there are different ‘types’ of autism, I believe that we ALL have our own individual variety of the same basic neurological difference. My mixing desk is just set up a little differently to yours.