If you are the parent of a child that you think may be autistic, you will almost definitely get asked the question: ‘But why would you want to give him or her a label?’
There are different kinds of labels, where autism is concerned – firstly, let’s look at what the word ‘label’ means. People tend to use the word, as in the above example, when they think that being given a clinical diagnosis gives you some kind of stigma, or disadvantage.
Autism – a diagnosis, not a label
However, in our minds, an autism diagnosis is that – a diagnosis, not a label – it means the individual meets a specific, clinically-agreed set of criteria for a specific issue, and this in turn means that the diagnosed individual may have access to support and services. (Yes, neurodiversity advocates do not support the medical model of a ‘diagnosed condition’ – but we can’t get away from the clinical aspect of diagnosis, and the benefits to autistic children of a diagnosis, in terms of support. Hence, we do use the term diagnosis, on the site.)
There are certainly some frustrating connotations surrounding autism, due to a lack of understanding and education, and that is probably where the fear of so-called labelling comes in.
Autism functioning labels
Let’s now look at the often-used functioning labels: ‘high functioning’ and ‘low functioning’. These have been used by parents and clinicians predominantly, to describe an individual on the autistic spectrum.
As an example, traditionally someone with an Asperger’s-type diagnosis would be described as having high functioning autism, and someone who is non-verbal or maybe has intellectual disabilities would have been described as low functioning.
Thankfully these descriptions are clinically ‘out of the window’, now. Diagnostically, autism is autism, and instead of being described as high or low functioning, an autistic individual can be described as having support needs, which are high or low; this is acceptable language.
A patronising badge
In terms of these functioning labels, if you were the autistic individual who was termed ‘high functioning’, it was like being given some kind of patronising badge: ‘It’s okay, you’re not low functioning; in fact, you’re not far off being normal! There is clearly barely anything wrong with you at all!’ (And this type of ablelist language is still being bandied about, sadly).
But using these labels presented two problems. One: your so-called lower functioning autistic friends and peers were made to feel inferior; and two, as a supposed high functioning Aspie, your own struggles and challenges were not recognised.
In fact, there have been clear divisions within the autistic community, for example with some families of autists with ‘classic’ autism questioning whether someone with Asperger’s was ‘truly’ autistic. The use of autism as a single diagnostic term is surely a step forward, to combat these divisions.
It should be pointed out that high functioning and low functioning are still often used as descriptive terms, and sometimes they need to be used, in context, to help understanding, as they are phrases that people are used to.
However with education, hopefully once people understand that autism is predominantly an issue of processing (and that it’s the co-existing conditions that the autistic may (or may not) have, alongside their autism, that tend to affect their support needs), the functioning labels will die out.
‘Mild’ and ‘severe’ autism
It is worth mentioning the further terms ‘mild’ and ‘severe’, when used to describe autism. These seem to describe high and low functioning autism respectively, and are often used in the media, when describing someone who has autism – notably someone with high support needs e.g. ‘severe autism’. It is our perception that again, ‘severe’ and ‘mild’ are not very helpful terms, and ‘has high support needs’ and ‘has low support needs’ are better phrases to be used. However, if a clinician or parent deems that the phrase ‘severely autistic’ is appropriate for a specific autistic individual, and may get them access to support and services, then who are we to argue?
(One issue to consider is that in cases where ‘severe’ is used to describe an individual’s autism, it seems unlikely that the individual themselves has a say in how they’re being described. Most autists are able to communicate somehow, and if it is not through verbalisation, then there are various communication devices, as well as writing and typing, that would allow the autistic input into the language that’s used to describe them.)
Autism: person first, or identity first?
On that note, there is always division and differing opinions in terms of the language used to describe someone who is autistic. Do we use identity first language, e.g. Jane is autistic, or person first language, e.g. Jane has autism?
There is no correct answer here, and opinion seems to be fairly evenly split – many autistic individuals prefer to say they ‘have’ autism, presumably because they don’t want their autism to define their identity – e.g. it is just a part of their overall make up.
Conversely, other individuals prefer to say that they are autistic, presumably because they believe that their autism affects, informs and defines so many areas of their life, and is their intrinsic being.
The best course of action is often just to ask someone how they like to be described, or even just listen and watch, and you will hear the language they use.
Lydia Brown writes further on the subject at THIS LINK, stating – ‘The theory behind person-first language is that it puts the person before the disability or the condition, and emphasises the value and worth of the individual, by recognising them as a person instead of a condition. When people say “person with autism,” it suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the colour of his or her skin.’
Lydia proposes that what we are saying when we say ‘Person with autism’, [the perceived meaning is] the person would be better off if not autistic, and that it would have been better if he or she had been born Typical. Conversely, and preferably, when we say ‘Autistic person’, we recognise, affirm, and validate an individual’s identity as an autistic person, according to Lydia. This is a view we concur with! However, equally, the English language and our use of it means we do all slip into well-practised phrasing – meaning that here at Spectra.blog, we have used ‘individual with autism’ instead of ‘autistic individual’. It is simply a phrase that slips off the tongue at the beginning of your educational journey. However, we do believe that the identity-first version is preferable.
(The website at THIS LINK also contains more useful links and articles on the subject of person first or identity first language.)
Language used by parents of autistic children
One frustrating element of autistic labelling and language is when parents of autistic children describe the children in a certain way, for example ‘severely autistic’ or ‘low functioning’. It seems to take away some autonomy and identity from the child. (The icing on the cake is when the parent describes themselves as an Autism Parent! Surely they’re just a parent? The autism community tends to find the ‘Autism Parent’ terminology a little patronising, as if the parent is owning the identity, when they don’t necessarily need to.)
A couple more terms that fall within the bracket of autism labels and language are Aspie, e.g. someone who has a diagnosis of Asperger Syndrome (or self-identifies), and also Autist or Autie, to describe someone who is on the autistic spectrum.
These are often used by the autistic individual themselves, and are all perfectly acceptable when used descriptively, and not unkindly.
Our belief is that when talking about one’s own autism, or talking about somebody else who is on the autistic spectrum, while it might take a little longer to gain understanding and clarity, avoiding phrases like mild or severe, and NOT using functioning labels, is a more beneficial way to move forward. Even though it may take a little longer to educate people about what is meant!
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism; the information we post here is based purely on our own exposure and experiences. We’d also love your feedback on our posts!
Read more here –
Also published on Medium.