Hello, and welcome back to The Autistic Writer. What is the autism spectrum? The word spectrum is used frequently in relation to autism, and the most common label currently used in autism diagnostics is Autism Spectrum Disorder (or Condition).
In casual conversation about autism, spectrum is often mentioned, but frequently the term is misinterpreted. It is common to hear the phrase “on the spectrum,” which is usually meant as another way of saying a person is autistic. This phrase can be very misleading, however, and is actually compounding one of the most unhelpful myths about autism.
my story
During the period I was on a waiting list for the autism assessment that led to my diagnosis, I felt profoundly uncertain about my place in the world. I was questioning everything about my life. My self-confidence was at its lowest ebb. Part of this was because, at that point, I knew almost nothing about autism. But I was aware of the negative view many people around me had of autistic people.
I remember one day at work, sitting close to two colleagues and being exposed to their loud conversation about another colleague. They were being rather scathing about this other person’s behaviour, and then one of them said, in a voice dripping with disdain, “He’s obviously, you know… on the spectrum.” It made me feel humiliated, and damaged my self-confidence even further.
These days, having slowly rebuilt my self-confidence, I would challenge such a comment. But back then, I simply didn’t have the mental strength.
casual language and technical language – equivocation
The ways in which people use words can be confusing. Many words have different meanings in different contexts. This can lead to problems when people use a word in the wrong way for a given context; a problem known as equivocation. This is what happens with the word spectrum.
casual use
When the word spectrum is used in casual ways not related to autism, people usually think of the colour spectrum, as seen in rainbows. For example, the CambridgeDictionary.org defines spectrum:
“The set of colours into which a beam of light can be separated, or a range of waves, such as light waves or radio waves.”
The second casual way in which people think of the word spectrum is as a continuum. The Cambridge dictionary again says this:
“A range of different positions, opinions, etc. between two extreme points:”
The same dictionary then provides a series of example statements showing how the word can be used in reference to a continuum:
“He has support from across the whole political spectrum.“
“The group includes students from both ends of the social spectrum (= range of social classes).“
“A wide spectrum of opinion was represented at the meeting.“
“My disease is nowhere near as bad as hers but they are on the same spectrum.“
technical use in autism
The word spectrum in relation to autism started life as a technical term, coined by Lorna Wing (1928-2014), a British psychiatrist who specialised in autism. Wing literally wrote the book on autism as a spectrum; that book was called The Autistic Spectrum: A Guide for Parents and Professionals.
Wing’s insight was that autism consisted of a combination of different traits, which were changeable and independent from each other. She recognised that there were a number of different diagnostic models extant, but she characterised them as being part of an overall condition of autism. Wing referred to the combination of traits and diagnostic models as a spectrum.
misunderstanding
Since Wing coined the term autistic spectrum, that word spectrum has been repeatedly misunderstood and misrepresented in the media and popular culture. This is largely because people assumed Wing was referring to a particular continuum-type definition of spectrum, rather than her intended meaning of a combination of different things. This is equivocation; people using the word in one context with a definition from a different context.
People assumed the autism spectrum was a continuum from mild autism to severe autism, and this misinterpretation has never gone away. It has entered the public consciousness, despite the efforts of well-informed professionals, the autistic community, and The National Autistic Society to correct the misunderstanding.
Wing’s spectrum model was infamously misrepresented in an article in the newspaper The Guardian in 2011. Despite giving some direct quotes from Wing, the article’s author added commentary that included the misunderstanding of the spectrum. This is taken directly from the article:
“Wing worries that this may detract from the needs of those at the lower end of the spectrum. She says: ‘Youngsters with Asperger’s syndrome are speaking up for themselves. Many see it as a difference not a disability, but that is a good and bad thing. For those with classic autism – like my Susie – it certainly is a disability’.”
Asperger’s Syndrome (another technical term coined by Wing) and Classic Autism are diagnostic labels that fit into Wing’s spectrum paradigm; the autistic spectrum consisting of a number of different diagnostic models and traits. But the author of the article referred to the “lower end” of the spectrum, indicating a continuum from mild to severe autism. This is not how Wing presented or intended the spectrum.
The issue of whether autism is a disability, as Wing claimed for her daughter in the above quote, will be covered in a future article.
While different autistic people might have had different diagnostic labels applied to them, and often have different combinations of support needs, the idea that autism is a continuum that people can be “on”, somewhere in the range of mild to severe, is inaccurate, unrealistic, and completely misrepresents the dynamic and shifting nature of autistic traits, and the genuine lived experience of autistic people.
Wing made attempts to further explain and correct understanding of her spectrum paradigm. In her 1988 paper The Continuum of Autistic Characteristics, she specifically wrote about a “continuum of autistic characteristics” rather than a continuum of severity. She stated, “The pattern of abilities and impairments is uneven and variable from one person to another.”
Two further famous quotes from Wing illustrate the way she envisioned her spectrum model as more complex than a line from mild to severe:
“It is not possible to draw neat lines between sub-groups [of autistic people].” ~Lorna Wing.
“Nature never draws a line without smudging it.” ~Lorna Wing
It’s not known why Wing specifically chose the word spectrum, considering the potential for misunderstanding. However, this is the term that has stuck, along with the public misunderstanding of it.
so what is it really?
The autism spectrum, or autistic spectrum – the terms are interchangeable – refers to a variety of autistic traits that cluster within autistic individuals in different combinations that were once given different diagnostic labels, but are currently under the umbrella label Autism Spectrum Disorder (sometimes called Autistic Spectrum Disorder, and sometimes called a condition rather than a disorder).
Rather than being a continuum from mild to severe, the autistic traits within a given autistic person are dynamic and shifting in response to the lived circumstances of that person.
metaphorical explanations of the spectrum
There are different ways autistic people have tried to explain how the dynamic nature of the spectrum works. I like the idea of autistic traits being like sliders on a graphic equaliser, with one slider for each autistic trait. These sliders move up and down independently from each other; sometimes a slider is at the top (most intense), sometimes at the bottom (least intense). Their movements sometimes seem random, sometimes in response to triggers. If you have a spell when your sensory sliders all happen to be at the top at the same time, that’s going to be a bad day for sensory overload, and so on for all the different autistic traits.
Real life is more complex.
Another descriptive image of the autism spectrum that is frequently shared on social media by autistic people is this:
complexity
Like everything else in the field of autism, the subject of the spectrum is more complex than people generally realise, and understanding it overlaps with many other subjects in the field. It’s not possible to fully understand the spectrum without also understanding issues related to diagnostics, media, culture, the neurodiversity paradigm, and so on. The vast range of subjects related to autism is like an intricately interconnected web, and when you pull on one strand, the whole web shakes. This will become clear as I explore many autism related subjects in upcoming articles, but we are going to touch upon one further point now.
why is IT a problem?
When people incorrectly assume that the autism spectrum is a continuum from mild to severe, this leads to the idea of people being “on” the spectrum; in other words, the belief that each autistic person has autism that is set at a given “level” of severity. This gets further over-simplified into the belief that some autistic people simply have “mild” autism, and some have “severe” autism.
The labels of “mild” and “severe” autism are sometimes transformed into the labels “high-functioning” and “low-functioning” autism.
This issue of severity and functioning levels is more complex than it first appears, and will be covered in detail in a future article. But for now, we can examine two problems with the inaccurate representation of autism in terms of severity or functioning levels.
the labels do not represent the reality of autism
The various autistic traits of any given autistic person are dynamic and changeable in unpredictable ways. An autistic person’s ability to “function” in a given situation or environment changes accordingly. For example, an autistic person who has been labelled as having “mild” autism, or as being “high-functioning,” will struggle to function when in the throes of an autistic meltdown or shutdown. But even this example is an oversimplification of the real complexity of autism and autistic traits.
the labels affect quality of life
Autistic people who have been labelled as “mild” or “high-functioning” often find it difficult to access support, because the people around them believe support isn’t really necessary. They often find that when they are experiencing difficulties related to being autistic, they are not believed. Experiencing this discrimination repeatedly can make these autistic people reluctant to seek help when it is genuinely needed. This can lead to physical and mental health crises, financial problems, or difficulties in education or the workplace.
Autistic people who have been labelled as “severe” or “low-functioning” often find that their needs, preferences, and requests are ignored by people who believe they know better. The assumption is that “severely autistic” or “low-functioning” autistic people lack the capacity to understand what is good or appropriate for them. This can lead to a degraded quality of life in general, with the autistic people who are treated this way feeling they have no control over their own lives.
is it acceptable to say “on the spectrum”?
The phrase on the spectrum has entered the public lexicon, and is here to stay. As a verbal shortcut when talking about autism, it can be useful. The caveat is that using the term in a way that promotes misunderstanding of autism – particularly regarding inaccurate, harmful severity and functioning labels – continues to be a problem. Furthermore, many uninformed people actually use the phrase as a slur. These points should be carefully considered before using the term.
further issues
The problem of identifying autistic people with inaccurate and misleading severity or functioning labels is also related to issues of autistic masking, environmental factors, the financial side of the wider autism industry, and the war of ideas being fought over autism by professionals in the field. These are all issues that will be covered in detail in future articles.
That’s all for this time. Take care.
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