Functioning labels. It’s hard to imagine that just two words could cause such division within a community. What once were rarely questioned terms have recently become a topic of much debate…and contention.
With the rise of neurodiversity as a movement, and the shelving of the term ‘Asperger’s Syndrome’* meaning the Asperger’s/autism divide has been toppled, it’s perhaps no surprise that people are left wondering how to describe where an autistic person is on the spectrum, without degrading them to a stereotyped label.
That’s the thing with labels; they’re often over-simplifying something complex and bringing with it a load of preconceptions. Let’s look at the term “high functioning” for example. This term was (and still is in many cases) most associated with those who have a diagnosis of Asperger’s syndrome and those who are autistic without accompanying learning disabilities.
The term implies a person copes well in our neurotypical world; is ‘functioning’ at a level that is seen as ‘good’. A fault with this however is that it brings with it the impression/belief that this person is ‘fine’ and functioning highly in all domains, when in reality we know that those with so-called ‘high functioning autism’ or ‘Asperger’s syndrome’ are disproportionately susceptible to comorbid psychiatric disorders (Mukaddes & Fateh, 2010; Ghaziuddin & Weidmer-Mikhail, 2010). This could mean that, although someone has been labelled as ‘high functioning’ solely based on the absence of learning disability and their ability to ‘blend in’ to neurotypical society, they in all likelihood will have a comorbid psychiatric condition, which may affect several areas of life, such as ability to work and consistently tending to personal hygiene.
On the flip side, someone who is deemed ‘low functioning’ (or, as is sometimes referred to as ‘classically autistic’) purely based on having a learning disability, may not have additional diagnoses, be able to participate in a fulfilling way in life, and be generally content, but will often be likened to media depictions of autism, which, as my own research has demonstrated**, doesn’t actually depict a realistic, or fair, version of autism.
If we were using more ‘true to life’ descriptions, these two examples of autistic people would perhaps be placed in the same category. That category being ‘moderate support needs’, or ‘varying support needs’, demonstrating that intellect and particularly learning disability, which often is used as a marker for division of functioning ability, is actually not a very good marker at all!
In an ideal world people would get to know an autistic person before referring to how they function but of course, for the sake of receiving the appropriate support, sometimes labels are called for. As we’ve seen above, functioning labels can be misleading and lead to people making assumptions. So what are the alternatives?
In place of functioning labels many autistic people now prefer to use the term ‘support needs’. As we’ve seen above, being labelled ‘high functioning autistic’ doesn’t equal no, or little, need for support, particularly if a comorbid condition is present. This is why terms such as ‘moderate support needs’ or ‘varying support needs’ are favourable to these misleading terms. It’s entirely possible for someone who is autistic with a learning disability to be in the same support needs category as an autistic person who does not have a learning disability.
Although this may make sense when explained, there are still people who use functioning labels, either for themselves, or to describe their family members, and perhaps in some cases these labels may be correct; you very well may meet an autistic person with no additional diagnoses who needs exceptionally little support, and by all accounts would fit the description of ‘high functioning’ (however this brings up the question of where we’re setting the bar, which I’ll return to). However, for many, these terms will simply not provide an accurate picture, nor, many would argue, be conducive to the change in attitude the neurodiversity movement wants to see. This brings me back to where the bar is set; what are we basing our perception of ‘functioning’ on? Of course we’ve already mentioned learning disability, but also how well an autistic person is ‘functioning’ is based on a neurotypical standard. This is partly why the neurodiversity movement are inclined to shy away from these terms: they judge us based on neurotypical ways of being.
When a person describes an autistic person as ‘low functioning’, they’ll often base this off of lack of conformity to neurotypical behaviour. For example, lack of eye contact, alternative communication/difficulty with speech (use of sign language/Makaton/AAC), atypical mannerisms and lack of compliance to neurotypical social norms. This tells us nothing of a person’s ability, or needs, simply how well they are able to ‘fit in’. So are we actually doing ourselves, as a community, any favours when we continue to use functioning labels?
What are your thoughts?
* ‘Asperger’s Syndrome’ was dropped from the DSM (the Diagnostic Statistical Manual, used to diagnose mental health disorders as well as neurodivergent conditions such as autism and ADHD) in 2013. It’s no longer diagnosed, replaced instead with ‘Autism Spectrum Disorder’.
** Research into societal perceptions of autism during my master’s degree uncovered that just 7.1% of autistic participants felt the media portrayed an accurate and fair representation of autism.
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References
Ghaziuddin, M., Weidmer-Mikhail, E. and Ghaziuddin, N. (2010) Comorbidity of Asperger Syndrome: A Preliminary Report. Journal of Intellectual Disability Research. 42(4). 279-283. https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2788.1998.tb01647.x
Mukaddes, N. and Fatteh, R. (2010) High Rates of Psychiatric Co-morbidity in Individuals With Asperger’s Disorder, The World Journal of Biological Psychiatry. 11(2). 486-492. https://www.tandfonline.com/doi/abs/10.3109/15622970902789130