The problems with functioning labels and autism

When I was a young child in primary school I started going to this place on weekends called Byron House. Most of the other people there were boys and they liked to play chess, which wasn’t really my thing. I don’t remember anyone telling me why I was there. I don’t even remember what I did there although I’m fairly certain it didn’t involve playing chess with a bunch of aspiring grand masters! I found out later that Byron House was a program for gifted kids and I one of those. Apparently my IQ score in primary school was very high and my voracious appetite for books, love of writing poetry and interest in topics apparently more mature than my years put me in the gifted group.

Intellect is not a quality I care a lot about. I have enough of it that I can do all the things I need to but it is not the key part of my work. However intellect and giftedness in Autistic people – as well as others I suppose – can become a more curse than blessing at times, particularly when it joins that very problematic concept of ‘high’ or ‘low’ functioning.

I have a friend who has two children who are Autistic. The older boy is similar to me in many ways – extroverted, quick-witted, can do his school work without to much need for assistance or intervention. This young man has been given the ‘high functioning’ label. His younger brother is more introverted and doesn’t speak much. He has some more noticeably different behaviours which bring him to the attention of staff at his school. This young man has been given the ‘low functioning’ label. My friend tells me what usually happens when educators and others meet her children: The older boy has very high – often unrealistically high – expectations placed on him, while his brother’s skills and capability is almost always ignored due to the low expectations that come with the ‘low functioning’ label. The older boy gets little or no help even if he really needs it and his brother rarely gets the opportunity for stretching or taking on challenges. This is one of the many issues with the functioning labels applied to Autistic people and the expectations which often surround them.  Applying a functioning label can rob Autistic kids and adults of the opportunities and /or supports they need simply based on assumptions around intellect and ‘functioning.’

High and low functioning Autism are not even actual diagnostic criteria within the literature. They are a sort of unofficial – and subjective – addition to the Autism diagnosis. Unfortunately they carry a lot more weight in society than they should. I am often described as ‘high functioning’. This is usually a shorthand for being verbally articulate and able to mix in non-autistic society, to study and work and so forth. If you look at me and my prodigious over-achievement of recent years, I am probably extremely ‘high functioning’ for any human being, Autistic or otherwise! However lives are not static. Twenty-two years ago I can tell you exactly where I was at this time of day on this date. I was in the management  unit at what was then known as the Metropolitan Women’s Correctional Centre in Melbourne: a privately-run hell where I engaged in all manner of self destructive activities which if I were an Autistic child in  school would have almost certainly have attracted the ‘low functioning’ label. This illustrates that functioning is a matter of time and experience and environment. Also functioning can change over the course of hours or days. I was in hospital once in recent years and the nurse asked where my carer was because I was psychotic as well as in meltdown. The assumption was that I needed 24 hour care whereas in actual fact I work in a high level job and spend my spare time writing books! At that point in my life I was definitely ‘;low functioning’ but this changed. When these labels are applied they are usually seen as ‘either / or’ rather than a range fo different levels of capability. They really don’t offer anything helpful to autistic people.

I know certain people will say ‘but this person doesn’t speak. They can’t work, they are low functioning,’ The statement contains a lot of quite unhelpful, not to mention insulting, assumptions. There are a number of Autistic activists and advocates who do not speak. Their advocacy is no less valuable because their voice comes form an iPad or laptop. The notion that people who don’t speak must of necessity have nothing to say is offensive and just simply wrong. Historically the ability to speak using vocal chords and words has been used to signify intellect and selfhood. This needs to be addressed because it is incorrect and incredibly invalidating for those who use non-speech communication.

Another problem with the functioning label, aside from it being based in quite a narrow notion of ‘function,’ is that is sets out a sort of path for people to take. It predicts what will happen in a person’s life and often this is not helpful at all. I have a friend who is a professional designer and is Autistic. He attended a specialist school for most of his primary years. His parents were told he was ‘low functioning’ and would not cope in mainstream education. Preferences and arguments around types of schooling aside, this person who was given the path for ‘low functioning’ in fact went to university and proved all of those stereotypes and assumptions wrong. This makes me wonder how many other kids and their parens are given the ‘path’ which in fact will result in them not leading the fulfilled life they otherwise could? Functioning labels come with a whole load of assumptions and in my experience assumptions and Autism are a dangerous mix often resulting in people being denied rights and opportunities.

I guess these issues relate to Autistic people being held up against measures based in non-autistic experience and values. They essentially say ‘how normal are you?’ They can either throw people in the deep end minus any support because they are apparently so ‘high functioning’ or they can result in a child and their parent/s having a predominantly pessimistic view about their future. I would like Autistic individuals to be treated on their own merits and experience, Some blanket functioning label based in a limited understanding about Autism not much use for individuals. We really need to stop using these functioning labels as hey cause a lot more harm than good and are essentially meaningless.

3 thoughts on “The problems with functioning labels and autism

  1. Thank you! Many people think Ben is “low functioning” because he has difficulty with speech, and has processing delays. Also because he doesn’t like to cooperate with testing in school. No one, except Ben, knows *what* he knows education-wise.
    People ask about his future. I always tell them there’s no way to know. He’s 12 years old. Most non-autistic 12 year old children, and their parents, don’t know what their future will be.
    I’ve always hated functioning labels. You’re absolutely right, they’re not helpful.

    Liked by 1 person

  2. People with ASD already have a difficult enough time thinking they can’t do things without being tagged with a label which only reinforces the inflexibility they already possess. Not to mention the self-esteem issues that ASD’s tend to possess with a world that doesn’t totally understand them. I understand that the labels are needed in order to identify what to look for in people and how to treat it but I had to get past those issues before the label could be useful for me. I could have gone to a thousand psychologists but until I was ready to accept that I could be more than how I started out to be, it wouldn’t matter.
    It seems that we as a society like to compartmentalize and this is one of the unfortunate side effects of that.

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  3. Wherever you are on the (ahem) Functional spectrum, They fixate on your shortcomings and ignore your talents (negativity bias). “When you label me, you negate me” – Søren Kierkegaard

    Labels (i.e.aspects) are like the facets of a diamond, you need to see the interplay of light among many of them to appreciate the sparkle, if you scrutinize only one, you can spot flaws underneath.

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