A colleague told me many years ago that a fellow employe had told her ’Jeanette shouldn’t say she has autism. She is very mild’. Aside form the inherent rudeness in such a statement about me to a third party, that little statement encompasses one of the most significant issues Autistic people can face: ‘Mild’ and ‘high functioning.’ These are labels applied to us, usually by non-autistic people, which apparently describes many Autistic people’s experience of Autism on their behalf and often ascribes a bunch of judgements and assumptions along the way.
The idea of high or low functioning Autism probably started to gain traction when Asperger syndrome was included in the DSM IV diagnostic manual which was published in 1994. I was diagnosed with Asperger Syndrome shortly after that. As I went through life and more people learned about Autism and Asperger’s I got given the ‘high functioning’ label. There were expectations with my ‘high functioning’ which I quickly noticed were very different to the expectations given Autistic people who had more need of support with day to day life and / or those who did not speak.
To my understanding there is no clinical descriptor called ‘high functioning’ and ‘low functioning’ Autism although some diagnosticians use them as a sort of rather unhelpful shorthand.
So why do I – and many other Autistic people – struggle with the high or low functioning labels? Well I can’t speak for others but my issues are many and varied. I will use the example of a friend who has tow Autistic sons. The younger son does not speak much and requires assistance for practical things. He is a lovely boy. His older brother, also a lovely boy, is more like me – articulate, speaks a lot and doesn’t need assistance for most practical things so much, but struggles with anxiety and being bullied. My friend says that almost universally, her younger son is underestimated and her older son has his difficulties dismissed. These functioning labels and the expectations which so commonly go along with them are really unhelpful for her sons. They mean that the younger boy is likely to struggle to get the opportunity to do all that much even if he is capable and the older boy will be expected to not ask for – or be given – much assistance, even when he needs it.
My thoughts on some of the specific issues in this are:
- Functioning labels privilege experience. The experience of the ‘low functioning’ person is usually viewed poorly and the skills of the ‘high functioning’ person are praised but their challenges missed or dismissed. For some people they may be twice exceptional / gifted but be utterly miserable, destroyed by anxiety, the cruelty of others or self doubt. Gifted people still need support. The fact they have unusual skills in one area does not necessarily equate to the capacity to manage other elements of life. I spent some time in gifted programs when I was in primary school but I ended up in jail when I was 20.That may be an extreme example but for me all I thought about being gifted when I was informed about it was that bullies harassed me at school because I was a nerd. I wanted to have less intellect so I could be like the other kids but there I was reciting poems about the end of the world in year seven!
- Functioning labels can also be used as a divisive thing. 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). I prefer to support commonality rather than focus on division. And no Autistic advocate really speaks on behalf of another Autistic person. We share our experience and knowledge in the hope that others – Autistic people, parents, clinicians, educators etc – will draw some insight and awareness from our knowledge.
- Low functioning labels in particular can be incredibly misleading. Many non-speaking Autistic people are highly intelligent. And many non-speaking people describe the experience that before they had an effective method of communication, they were observing the world and experiencing things as others who speak do. I am horrified to imagine what some people must have witnessed in terms of put-downs, insults, disrespect and ableism said right in front of them.
- I always think functioning labels come from the basis of ableism and discrimination. The functioning labels model seems to be based on deviation from a notion of ‘normal functioning’. In such a model a non-autistic person is the yard stick for measuring Autistic capability. In this model presumably there is the ‘norm’ represented in the neurotypical person, then the ‘Aspie’ who seems more ‘normal’ and then the ‘low functioning’ person who supposedly is the least ‘normal’ of the three, on the outer edge of capability. I’m sorry, but from a perspective of neurodiversity and inclusion and as someone captured in this model this horrifies me. What is this ‘normal’? And why am I and other Autistics based in terms of deviation from this? In my mind, we all have skills and attributes and difference is certainly not ‘less’.
One issue with the functioning labels is that many people find them a neat shorthand to describe their child, their student or client or sometimes themselves. I think though that this shorthand is problematic as the high and low functioning descriptors don’t exist in the diagnostic literature, Now bear with me here. I do not subscribe so much to the medical model of disability so I am aware a description in a diagnostic manual does not actually define our experience. But the clinicians and from them educators and all others who support Autistic people at some point in their journey have the diagnoses listed in the DSM 5 diagnostic annual. So if they use this additional ‘high functioning’ or ‘low functioning’ which isn’t in fact defined anywhere people think it is official. But there is no definitive list of high or low functioning . The descriptions are arbitrary and subjective. Each person applying these labels is just applying them based in their own individual beliefs. So while the medical model of disability is problematic in describing our Autistic experience, the functioning labels are even more problematic as there is no way to determine what they actually mean other than the ‘feel’ or ‘vibe’ of the person applying them!
I would love for us to get rid of the functioning labels. Each Autistic child or adult is a unique individual. We fit within the broader umbrella of the Autism spectrum but beyond that we are all different. Rather than clarifying understanding of how best to support us, the functioning labels are likely to do the exact opposite.