Increasingly, as awareness of autism and constructs such as “the autism spectrum” grows, one hears people casually describing their acquaintances with phrases such as “she’s a bit spectrum-y” or “he’s a little autistic“. Being perfectly honest, I have used such phrases myself. I guess I’ve found it a helpful and succinct way to describe a few people, especially when talking with colleagues who are also very familiar with autism.
But what does it mean when we use language like this? Is this type of language offensive, or can it be interpreted more positively? And does scientific research have a role to play in the debate?
First, what do we mean by “the autism spectrum”
This term was initially coined by Lorna Wing and enshrined in her now-classic book The Autistic Spectrum. The goal of the term was to emphasise the rainbow of different manifestations of autism and the wide variety among autistic people. However, more recently the concept of a ‘spectrum’ has started to be viewed not just as a way to conceptualise differences between people with an autism diagnosis, but also as a continuum which stretches across the diagnostic boundary. Thinking about the spectrum in this way means we could all theoretically place ourselves somewhere “on the spectrum”. Autism becomes a group of people who are at the extreme end of a normal distribution, like the red-marked area in this sketch. Diagnosis then is simply a matter of being one side of the line, or the other.
This approach to understanding autism is also manifest in the notion of a ‘broader autism phenotype’, or BAP. The BAP is a description for a group of traits which are a) found in high concentrations among people diagnosed with autism and b) found in not-quite-so-high concentrations in their close genetic relatives. The Autism Quotient is a questionnaire specifically designed to measure these traits. Scores are often used to represent so-called ‘severity’ of autism in autistic people, and also to capture degree of autism-y-ness (technical term) among the general population. Items on the AQ invite people to agree or disagree with statements such as I would rather go to a library than a party (agree = BAP trait) or I find it easy to work out what someone is thinking or feeling, just by looking at their face (disagree = BAP trait). A range of studies with non-autistic people have related number of BAP traits to other features such as brain structure and function or use of language as well as to genetic components associated with autism.
That sounds quite useful then, doesn’t it?
Well, maybe, maybe not, for a couple of reasons. First, what if autism isn’t just at the end of the typical range of behaviour? What if autism is a totally different distribution of its own? In this situation, we can’t just line ourselves up in order of how ‘autism-y’ we are. As a parallel, think about the differences between a lake and a sea. A sea is not merely a large lake. They are not part of the same distribution, where seas are simply all the bodies of water over a certain size. Instead, a sea is fundamentally different to a lake because it has salt instead of fresh water. Some seas are in fact smaller than some lakes (don’t ask me which ones, I’m not a geographer).
So, in terms of autism, the question is, are autistic and non-autistic people fundamentally different? Are they like seas and lakes? or are they like… little lakes and big lakes?
What’s the answer?
I’m afraid I don’t know. and I’m not sure anyone has the answer though I expect autistic people, practitioners and researchers will all have an instinctive way of thinking about autism which matches up with one model or another.
You said there were a couple of reasons why the autism spectrum idea might not be helpful? What’s the other one?
The other one is the problem of linearity. This applies to both of my illustrations above, which both pretend that you can arrange people on a single line. To explain, imagine I asked you to label the sketched graphs in this post. What would you write along the bottom edge? What is the single thing which, if you have more of it, it means you are autistic? and if you have less of it, you are not autistic?
There’s nothing, right? Autism just doesn’t work that way. Whether autism exists at an extreme end of a normal distribution, or on a separate distribution of its own, there’s no single variable we can use to distinguish between people who are and are not autistic. This is a major problem with the notion of the spectrum. Though I don’t think this was intended when the term was coined, we have started to think of the spectrum as a line. A cartoonist illustrated the problem with that thinking beautifully here, so I won’t reiterate. But in her words, the spectrum should really show how autistic people “are all capable of varying strengths and weaknesses”.
So, how does all this link back to the first question?
Good point. I think really, the question of how “autistic”, and “non-autistic” and “sort of reminds me of an autistic person but not actually autistic” relate to each other, cannot be easily answered by data. Instead, it is worth considering how this way of thinking about autism might impact on autistic people and their allies. Let’s go back to the opening of this post.
…one hears people casually describing their acquaintances with phrases such as “she’s a bit spectrum-y” or “he’s a little autistic” … What does it mean when we use language like this? Is this type of language offensive, or can it be interpreted more positively?
Let’s deal with the “offensive” question first. As with all matters of offense, this is not for me to say. If you find language like “a bit spectrum-y” offensive, then, that’s that. It’s offensive.
But I can ask, whether this language is necessarily meant to be offensive. And I think, as so often, this boils down to the attitude and intention of the person speaking. Using language like “I’m a bit autistic” might signal that someone thinks about autism as part of a normal range of variation – and that can be really positive. It undermines the Us and Them rhetoric that risks lining autistic and non-autistic people up against each other, opposing armies struggling for supremacy in the Neurodiversity Wars. If I can identify with autistic people, finding connections between the way they tell me they experience the world and my own experiences, it might help me to adapt my behaviour to their preferences. For example, when I’m going to meet with an autistic person, remembering how being taught by my smelly chemistry teacher made it impossible to concentrate on her lessons, reminds me not to wear perfume.
There are a couple of down sides to thinking this way too. First, if make the mistake of thinking that my chemistry lesson memories are somehow equivalent to the sensory bombardment which many autistic people battle to tolerate all day, every day, I risk belittling their experience. This can be thought of as akin to saying to a person with clinical depression “I know what that’s like because I felt sad after my girlfriend dumped me“. It isn’t the same. I can’t relate. On the same note, if I think there’s not all that much difference between autistic and non-autistic people, I could use that to justify not paying proper attention to autistic voices. I might allow myself to think I can use my imagination and experiences to stand in for the genuine opinions of people who are #actuallyautistic
Can we wrap this up into a nice pithy conclusion?
Not really. Or, I can’t anyway – maybe you can. The scientific debate is unresolved – we don’t have evidence that can categorically determine whether it is more accurate to think of autism as part of a normal range, or an independent distribution with its own identity and internal variation. Attempts to explore this question are complicated by the fact that we might find different evidence depending on which dimension we explore – whether we look at preference for libraries over parties, or ability to guess people’s thoughts from their facial expressions. Not to mention the fact that any of these traits will manifest differently depending on the context (sometimes I like the library more, sometimes I fancy a party…)
In our choice of language, we should always try to adhere to basic principles of respect. I think the root of my dilemma is that, in this case, I’m genuinely not sure whether language like “a bit spectrum-y” will break down barriers, or build them up. What do you think?