Querying the function of functioning labels

As an Asperperson with a good job, a bunch of achievements and a couple of books, I get it all the time. I’m sure you’ve heard this or similar said about either yourself or someone you know. It’s very common and very fraught. It is the functioning label. ‘Oh Jeanette’, they will say ‘but you’re very high functioning.’  This is a dangerous statement for a  number of reasons which I’ve listed here:

  • Function is a subjective label. Who is to say whether I am high functioning, low functioning or not functioning at all? It doesn’t really describe a quantifiable state.
  • The idea of functioning is premised on a ‘norm’ and almost always a neurotypical norm at that. The more a person deviates from this apparent and arbitrary norm, the lower their level of functioning. I don’t like the idea of basing an assessment of someone’s capabilities in this manner.
  • People who are often put in the ‘low functioning’ group tend to be people who don’t speak. The assumption around people who do not speak is that they must have a severe intellectual disability. This is frequently not true. People with Autism who started speaking at older ages often state that they knew everything that was going on all the time. So who’s to say that speech is the holy grail of function? I was lucky enough to know Anne MacDonald. She did not have Autism but she had cerebral palsy. For those not familiar with the story, Anne was kept in a children’s home for children who were apparently severely affected by intellectual disability and who had no way of interacting with the wider world. This place was a hellhole and many of the young people and children there were just as intelligent as you or i but had no speech. Anne went on to earn a double degree, co-write a book and ‘speak’ all over the world (with the aid of communication technology). She won the Disability Day award in 2009. She was an absolute luminary in the disability world and she never uttered a word. The whole idea that speaking and intellect are inexorably linked is very problematic. Here’s a link to Annie’s book, ‘Annie’s Coming Out’: http://www.amazon.com/Annies-Coming-Out-Rosemary-Crossley/dp/0140056882/ref=sr_1_2?ie=UTF8&qid=1414904158&sr=8-2&keywords=Annie%27s+coming+out
  • People can change over their lifetime. To slap a functioning label on a child may be dooming them to a life of underachieving and being given inappropriate services and support.
  • Finally, what does functioning actually mean? I have always been described as a ‘high functioning Autistic person’ by clinicians. However, I spent five years in intense distress, being extremely suicidal, being imprisoned and an involuntary patient in the psych ward, feeling so awful that at one point, I asked a doctor to give me a lobotomy. Is that high functioning?

These labels are not helpful as far as I am concerned. I never use them myself when talking about myself or other people on the Autism spectrum. I think the medical profession can do a bit better than this as it does not serve much of a practical purpose for people on the spectrum.

Instead of talking about their level of functioning, how about we describe people based on their individual characteristics; their strengths, weaknesses, loves, foibles, issues and passions, rather than giving them an inappropriate and outdated functioning label.

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