This, second part to the ‘Autism Labels’ series will look at the terms we use to describe the abilities of people with autism.
As discussed previously in part 1, the condition has huge variability and the diagnosis now encompasses groups of symptoms, which prior to 2013 had a different label entirely.
There are terms that are used widely in research, the media and by practitioners that are strongly debated. I will touch on those that I have encountered here and discuss the reasons that they can cause such controversy.
High versus Low Functioning
These terms aren’t used in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) but are widely used to describe the ‘ends of the spectrum’.
What is wrong with these terms?
- They are judgemental:
As they are not used as a part of a diagnosis, the use of high and low functioning is entirely subjective and dependent on the perspective of the professional or individual using the term. Assumptions would be made on the level of functioning of another person, which is unlikely to provide an accurate depiction of the strengths or challenges of the person. It encourages people to attempt to make a judgement on someone’s abilities in order to fit them into one of the two categories.
People don’t fit neatly into two boxes!
- They are misleading:
Referring to someone as high functioning may disregard to struggles that they do face. For example, the individual may appear high functioning, in that their condition foes not impact their life in an obvious way. However, they may also experience significant sensory challenges, which may not be recognised from someone from the outside.
Similarly, those who are labelled low functioning may have particular areas of strength, which may be overlooked when their general functioning is described as being low. It can also be that a low functioning label fosters low expectations for that individual.
- They demonstrate ignorance of the condition itself and the aim for neurodiversity:
High functioning can be used as a compliment but this implies that the aim should ultimately be to be ‘normal’ or neuro-typical. This can therefore be an underhanded compliment due to the suggestion that the person appears ‘normal’. This is not the aim of the autism community, with many championing their differences and merely seeking understanding from others as opposed to a cure to make them ‘normal’.
I can’t speak for the autism community myself but this video of Amythest Schaber showing ‘What shouldn’t I say to autistic people’ highlights this and some other very interesting points.
- They are disparaging:
The low functioning label can come across as belittling and disparaging. Would you rather be described as high or low functioning? Are there areas in your life that you find difficult? If so, would you like to be described as ‘low functioning’ in these areas? I know what my answers would be and what my reaction would be to being described in this way!
Judy Endow has stated that being seen as high functioning makes her feel like people see her as a ‘better human’. This being said, it would follow that a low functioning label may make others feel like they are a ‘lesser human’. If this is how these labels make people feel then there is a clear need for these terms to evolve.
Mild, Moderate or Severe Autism
An alternative to using the functioning labels described above can be using the three levels of mild, moderate or severe to describe the severity of one’s autism. Some consider them preferable to high or low functioning; however, they are still fraught with issues. They do, at least, provide one additional ‘category’ and remove the added stigma that the words high and low generate. Yet they still do not offer any qualitative information about what the difficulties may be.
What is wrong with these terms?
- Symptom severity may differ according to context:
Someone may present with different symptoms according to the context. Referring to someone as having mild autism implies that the condition does not impact upon their life. However, in certain contexts for that person it may well seem severe.
Some have argued that it is more difficult when you are placed at the mild end of the spectrum due to society’s expectations and pressure to fit in and behave like everyone else.
- There are many different spectrums!
It may be more appropriate for us to talk about people with autism as having many different spectrums. There can be a language spectrum, a social spectrum, an ‘activities of daily living’ spectrum, a sensory spectrum and the list goes on and on.
Someone may be more adept in their verbal communication and in their activities of daily living, which could give the impression that their autism is mild and therefore not greatly impacting their daily life. However, the same individual may struggle to build and maintain social relationships or experience strong sensory differences, which could make their day to day living a great challenge and could even give rise to other mental health issues.
We need to see each individual as just that, an individual, with a unique set of strengths and difficulties in different areas of their lives, just like someone who is neurotypical.
Learning Disabled with Autism (LDA)
This term is used to describe those who have a learning difficulty alongside an autism diagnosis. Some wrongly assume that if you have autism you have a learning difficulty, which is simply not the case. Someone can be assessed as having a learning difficulty if they possess an IQ of <70.
When used to describe someone with autism, this term provides no information regarding their level of functioning or how severe they experience symptoms associated with an autism diagnosis. It purely indicates if there is a coexisting intellectual disability. Someone with autism may have a coexisting learning difficulty but may be perfectly adept at daily livings skills or in their verbal communication, for example. It does not mean to say that they are ‘low functioning’.
Some say that you have autism or you don’t and that any classification or functioning label does not matter. There also appears to be a general consensus in the autism community that they do more harm than good.
Consequently, there are arguments that say functioning labels should be done away with completely and more in depth information given only as required.
It is evident that the terms we use to indicate severity need to be reconsidered. Whilst there is a valid argument for the dissolution of the functioning labels discussed here, it can be valuable in autism research to, somehow, demonstrate or characterise the difficulties of participants. This helps to ensure that a sample is representative of the, highly varied, autism population or may help to target interventions to a portion of the population with a specific difficulty.
Next time, in part 3, I will look at how we can change our use of functioning labels in research.