Autistic Functioning Labels
After my last post on how an autism diagnosis can still have a negative impact on the provision of healthcare I'm going to delve deeper into some of the issues around classification. I'm going to talk about Autistic Functioning Labels and then follow up next time with how this relates to the autistic rights movement and their critics.
A recent response to me telling someone that I am autistic was "you're obviously high functioning though". It was late and I'd had a few drinks so I just let it slide. There are many problems with defining autism by level of ability to function.
What people are inferring when they say someone with autism is high functioning is that they believe the person has a mild form of autism and that a low functioning person has a more severe form of autism, this is not at all correct.
Firstly, you have to think about the negative way around this is presented. It's inherently wrong to define someone by their inability to function rather than the more positive position of the amount of support they might need. It comes from a lack of understanding about what autism is. For example an autistic person who cannot dress themselves may be lumped into the "low functioning autism" category. They may struggle to fasten buttons and tie their shoelaces. If a non-autistic person has the same issues due to arthritis we don't refer to them as a "low functioning neuro typical". It's just something they struggle with and may need some support.
The next issue is that the Low/High functioning model is a binary scale, a dichotomy that lumps everyone with a diagnosis into one category or the other. It doesn't have scope for the whole range of different traits that make up the diverse range of autistic people.
Some autistic people can have strengths in certain areas and struggle in others. To try and compare different traits in order to classify them into a functioning group doesn't make any sense. Every autistic person is different and you can't compare someone's ability to make eye contact with someone else's sensitivity to temperature. There is no realistic criteria to use.
So how is the severity of autism defined officially? Well, the criteria for autism as a diagnosis is laid out in the "Diagnostic and Statistical Manual of Mental Disorders, 5th Edition", also known as the DSM-5. This manual considers three different levels...
Level 1 ASD is the mildest form. People with level 1 autism require some support. As I mentioned above this is poorly labelled as high-functioning autism by some.
Level 2 ASD is the middle level of autism. People with level 2 autism require substantial support.
Level 3 ASD is the most severe form of autism. People with level 3 autism require very substantial support. Again this is what is sometimes poorly labelled as low-functioning.
...this isn't perfect but it is better because it identifies people not by their abilities, or lack thereof, but by how much support they may need.
Imagine this situation with two very different autistic people; Person 'A' needs help getting dressed, but is perfectly capable of driving a car. Person 'B' can get dressed fine but can't drive a car. Who is the higher functioning?
Both of them can't do something that is a daily task and that most people have no problems with. To resolve their issues Person 'A' needs a carer to dress them whereas Person 'B' uses public transport.
The previous diagnostic manual DSM-4, in force up until 2013, broke autism down into...
299.00 Autistic Disorder
299.80 Rett's Disorder
299.10 Childhood Disintegrative Disorder
299.80 Asperger Syndrome
299.80 PDD-NOS
This was all reclassified as "Autistic Spectrum Disorder" in DSM-5 with some controversy.[1] So why was it changed?
The usefulness of the DSM-4 classifications, the ability to put everyone in the right box and the reasons for these segregations were called into question and the rethinking of autism as a spectrum of traits rather than sub-categories of diagnosis emerged.
There was an acknowledgement that autism wasn't and couldn't ever be something to be cured. Autistic children become autistic adults!
Linking this back to the high/low functioning dichotomy and using some very outdated terminology, Kanner’s infantile autism and Asperger’s syndrome[2] were considered the two extremes of autism. They were once thought to show no related connections but as we understand more about autism we see the interconnected lines between all previous categories and that autism is indeed a wide spectrum alternative neuro-type.
There are some criticisms of this way of thinking and some of the critics like to use the high/low functioning labels to help endorse their arguments. They claim that autism advocates like myself are all high functioning and do not have the right to speak on behalf of the whole autistic community. I'm going to address some of these criticisms in my next blog.
[2] https://jnnp.bmj.com/content/76/2/205
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