Updated: Dec 18, 2022
The trouble with functioning labels is that the autistic person always looses out. If said to be high functioning then people assume that everything is easy and wonderful, with rainman stereotypes thrown in, but that invalidates the very difficult struggles the person still faces in everyday life. Conversely if labelled 'low' functioning, a person is often written off, infantilised and not given opportunities to education or employment. This may simply be because the person does not possess language, but in reality people can still communicate in other ways. For example there are many autistic writers that do not have verbal language, but are very articulate in their written words. Perhaps it is not about grouping people at all, but individualising their specific support plan based on their unique strengths and other co-occurring conditions. In that way, the word autism is a valid umbrella term, but not used as a label. Only a starting point. As an autistic person, that's what I think anyway. Functioning labels do not take masking into account. This is when an autistic person feels unsafe to be themselves in front of others. For example they may hide their natural autistic coping mechanisms such as stimming which is used to relax and regulate sensory processing. This means that the way autistic people present to others (or when alone) can change notably, depending on the situation. Thus someone can be mis-labelled (or misdiagnosed) as being fine, while actual support needs can be missed or misunderstood. The way I function as an autistic person can vary from week to week, day to day, or hour to hour. It depends what environment I am in and the stress that I am under. Under prolonged periods of stress, autistic people experience burn out. Or in an extremely disturbing environment or situation we can experience a meltdown or shut down, where we loose control of our bodies in response. These all require long periods of recovery time which can take many days. If we accept that functioning varies over time in autistic people, then it is not useful, but actually harmful, to put a permanent unchanging label on them. It only causes misunderstanding and serves no useful purpose beyond allowing medical professionals an easy tick box exercise. It does not help them get the support they need, but can lead to further delays, misdirection, trauma and leads to worsening mental health. In order to truly support autistic people we need much more personalised support packages. The difficulties all autistic people face are so diverse and complex that you would need to delve into the details anyway, even if you first used a functioning label. We can no longer just be quickly labelled, like a supermarket commodity and stuck on a shelf for the rest of our lives. We are on a journey of development, faced with challenges both obvious and very subtle, but all just as challenging in our lives. Let our language be clear and plain. High and low functioning labels are inherently ableist, so let's cut them out.