The problem with functioning labels and autism

As an autistic person I often meet p[people who say ‘oh but you are so high functioning’ and think this is some kind of compliment. It isn’t. In fact the whole concept fo functioning labels for autism is highly fraught, unhelpful and misleading. The functioning labels describe a state of being for autistic people. They are completely arbitrary and do not benefit autistic people.

The idea of functioning is premised on the idea of a ‘norm’ of behaviour. Autistics deviate from this ‘norm’. The norm is seen as the pinnacle of being human. The idea goes that if you are ‘low functioning’ you are a long way away from that norm and if you are ‘high functioning’ you are closer to it which apparently is a good thing. I am an autistic advocate and espouse a neurodiversity and ‘different not less’ approach to viewing autism and other neurodivergences. As such I do not want to be closer to a ‘norm’ of being. In fact I don’t think there even IS a norm! And if there was I wouldn’t necessarily want to be like it. Masking / camouflaging comes into play here. As autistics we are told – either implicitly of explicitly – that we need to be ‘more normal’ and we are often bullied and abused for being different. This means a lot of autistics try to appear more like the ‘norm’ and try to squash down their autistic traits. This is not ever OK. In a better and more inclusive  world we would not need to do this.

One of the issues with functioning labels and masking is that it can mean we miss out on a diagnosis or other supports. The act of trying to be more like the apparent ‘norm’ means we get missed in term of support needs. Clinicians will deny an autism diagnosis because people ‘make eye contact’ or ‘are social’ not realising that the reason for this is that we are masking in order to survive.

The functioning labels are also unhelpful in terms of our ability to access support and how we view ourselves. I have a friend who has two autistic children. The oldest gets the ‘high functioning’ label. What this means is that they cannot access any support and also that people downplay their needs. Just because this child does well at school and holds it together during the day does not mean they are less in need of support. In fact if anything they need significant support. This child’s brother gets the ‘low functioning’ label. What this means is that they are expected to never achieve anything. They are not challenged and all of the expectations about this child are based on what they cannot do. This is also not a helpful approach to autism. The functioning labels – far from being helpful – present a misleading picture of these children and their capability and impact on them very negatively.

Functioning is also something which changes all the time. I saw my advocate colleague the excellent Jac Den Houting give a presentation a few years ago. Jac put up two slides of attributes. One slide was things considered ‘high functioning’ qualities and the second was ‘low functioning’ attributes. Jac then put up a third slide which said that both slide one and slide two were the same person – Jac themselves. This really resonated with me. I also vacillate between high and low functioning sometimes, even over the course of a few hours or a day. I was in hospital once and I got very paranoid and frightened and the nurse asked me where my support worker was! A couple of weeks after I was at Parliament House receiving an award. These extremes of functioning were definitely both me.

You probably know that the autism diagnosis in the current version of the DSM has three levels. Level one is what would have been called Aspergers Syndrome under the previous DSM. I have never really known what clinicians use to diagnose levels two and three as it all seems a bit arbitrary. I think level three tends to be non-speakers but I’m not 100 per cent sure of that – and sadly I suspect the clinicians aren’t either! These levels are very much based in the same concept as the functioning labels. It saddens me to think that the diagnostic criteria are based in deviations form the ‘norm.’ I don’t know how to address this as the diagnosis is not just for the purposes of identity but also for accessing support services and clinical services if we need them. 

I will share a personal story because I am Yenn and that is what I do! A few years ago I had a manager at work who was a bit problematic. One of my colleagues relayed something this manager had said about me which was ‘[insert Yenn’s dead name] should not say they are autistic because they are too high functioning’. I found this very upsetting and also quite ableist. This person had no idea of my life’s journey or my emotional and social issues. The Yenn that they saw was in their role as a corporate employee. This person had no idea of what I go through every day and they took it on themselves to decide how I should view my own identity. Sadly this sort of thing is all too common and it is not ever OK.

I think we need to remove the functioning labels from any discussion of autism. They are not helpful and not OK. I am autistic and that is that. My functioning is what it is and it changes over time and that is OK. The only discussion I want to see about functioning is when we need to access support in a specific field and the functioning discussion is about accessing what we need to achieve that. 

2 thoughts on “The problem with functioning labels and autism

  1. Thank you for sharing your truth Yen.
    I’ve printed it off so when I can focus, I can try to process. I’m still recovering from a huge autistic breakdown and feeling overwhelmed, exhausted and sensitive. I received a barrage of complaints from my support workers and my 24hr team. I’m feeling vulnerable and trust issues have surfaced big time. I’m going to be totally honest and say ( even though I haven’t finished reading it all) I’ve felt many times jealous of High Functioning people. Without realising how judgmental it is. Even though I still don’t know how to accept or understand my own Autistic life, it’s been 6 years now and I’m 48. My life has changed drastically- with a marriage separation, chronic bone pain, early onset dementia, I’m going to be sharing my SDA House with another person and their SIL support and the list goes on. I don’t have any family or friends anymore and loneliness is difficult. I apologise for any ignorance regarding my words. I am trying to drag myself up and out of my pit. So thank you Yen. And please give my love to your Furry Amigo 🐈‍⬛

    Liked by 2 people

  2. I’m similarly sometimes told, “But you’re so smart!” To which I immediately reply, a bit agitatedly, “But for every gift I have, there are a corresponding three or four deficits.” It’s crippling, on both professional and social-life levels.

    My own experience has revealed that notable high-scoring adverse childhood experience trauma resulting from a highly sensitive and low self-confidence introverted existence, amplified by an accompanying autism spectrum disorder, can readily lead an adolescent to a substance-abuse/self-medicating disorder, including through eating. It’s what I consider to be a perfect-storm condition with which I greatly struggle(d), yet of which I was not aware until I was a half-century old. I believe that if one has diagnosed and treated such a formidable condition when one is very young he/she will be much better able to deal with it through life.

    I understand that my brain uncontrollably releases potentially damaging levels of inflammatory stress hormones and chemicals, even in non-stressful daily routines. It’s like a discomforting anticipation of ‘the other shoe dropping’ and simultaneously being scared of how badly I will deal with the upsetting event, which usually never transpires. Though I’ve not been personally affected by the addiction/overdose crisis, I have suffered enough unrelenting ACE-related hyper-anxiety to have known and enjoyed the euphoric release upon consuming alcohol and/or THC.

    Liked by 1 person

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