Why I think functioning labels are fraught and unhelpful

I was speaking to a parent of an Autistic child today. She was a lovely woman and this was my first conversation with her about all things Autism. She told me that she went to a few parent groups but then stopped going. I asked her why she stopped going and she said she was worried that the other parents whose kids were more ‘high needs’ than her son would think her and her family undeserving of support due to their child’s apparent lack of challenging behaviours. This made me very sad. I recounted to this woman my experiences as a so-called ‘high functioning’ Autistic child. I told her how I was bullied mercilessly as a school student and how this gave me a sense of alienation and difference. I went on to explain how this sense of difference became all-pervading and I longed to be ‘normal’ but didn’t know how to do it. How as a young adult I was so desperate to belong and be accepted by others that I joined quite terrible peer groups like drug addicts and criminals and this led to me making extremely poor choices and ending up institutionalised, and being very lucky to survive many highly dangerous situations. Yes, I was probably a person who would now be judged as ‘high functioning’ but my support needs were very high too.

This illustrates to me some of the difficulties with functioning labels. There are many issues I have with these sorts classifications, which are listed here:

  • People’s needs change. I have a number of friends who are Autistic and started their life with a ‘low functioning’ label. They were brought up in disability group homes and attended specialist schools. However as adults, these friends live independently, work and have tertiary qualifications. Of course this suggests one of two things: either my friends’ needs changed over time or the functioning label was not a very useful indicator of their capabilities, or maybe a little of each. People respond to different situations and may attract different functioning type labels over their life, which suggests that such labels probably don’t mean a  lot in terms of a workable diagnosis.
  • The last point  leads on to how the label itself determines how a person and their family see themselves and their capabilities. If you are told your four year old child is a ‘low functioning’ Autistic person and will have high support needs for the rest of their life, this may well be what happens because that is the model that everyone – family, support workers, clinicians, educators and most importantly I think the child themselves – are working within. We may be condemning people to low expectations or being unable to fulfil their potential as people.
  • Functioning labels can also be used as a divisive thing by some people in the Autism community. I have been told on a few occasions ‘You can’t speak for my child. You are high functioning.’ (thankfully this doesn’t happen a lot). So apparently we have two Autisms – the high functioning one and the low functioning one and one group doesn’t understand the other. I prefer to support commonality rather than focus on division. And no Autistic advocate speaks on behalf of another Autistic person. We share our experience and knowledge in the hope that others – parents, clinicians, Autistic people, educators etc – will draw some value form our knowledge. I will never say that I speak on behalf of anyone.
  • Low functioning labels in particular can be incredibly misleading. Many non-verbal Autistic people are highly intelligent. And many non-verbal people  describe the experience that  even before they had speech or an effective communication device or system, they were observing the world and experiencing things sensitively. I can only imagine what some people must have witnessed in terms of put-downs, negativity and ableism.
  • Functioning labels come from the basic premise of some kind of ableism as far as I am concerned. The functioning labels model seems to be based on deviation from a norm. So a non-Autistic person is the yard stick for measuring Autistic capability. Then you have the ‘Aspie’ who seems more ‘normal’ and then the ‘low functioning’ person who is the least ‘normal’ of the three, on the outer edge of capability. I’m sorry, but I am from a perspective of neurodiversity and this horrifies me. What is this ‘normal’ thing? And why am I an other Autistics based in  terms of deviation from this? In my mind, we all have skills and attributes and difference is certainly not ‘less’. I suppose that is my fundamental issue with the functioning labels. They are unhelpful in my mind and set up an arbitrary ‘norm’.

I would prefer it if we looked at people as individuals, who have their own skills and abilities, strengths and challenges. I think the functioning labels  do more harm than good. I would never describe myself as ‘high functioning Autistic’. In fact I don’t think I have met an Autistic person who uses those labels to describe themselves. And I think that is probably the most pertinent point in this blog post.

 

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