Functioning labels and autism

Content warning: mention of suicide

It is very common to hear autistic people described as mildly autistic or severely autistic. Or perhaps high or low functioning. Or you may hear questions like which ‘end of the spectrum’ are they on? Probably one of the worst examples I have heard was when a parent told someone their child was autistic and the person replied ‘the good kind or the bad kind?’

When the spectrum was first described by Lorna Wing she never intended it to be seen as linear from mild to severe. It really is better seen as a wide variety of peaks and troughs in ability. The word spectrum is useful to emphasise the diversity of abilities amongst autistic people but functioning labels are problematic and here are some reasons why:

1. High functioning often means ‘able to mask’. In other words able to ‘fit in’ and hide one’s difficulties. We know that masking can be a predictor of mental health problems and suicide. If someone is struggling so much with being autistic that they end up dying from suicide we should not be describing their autism as ‘mild’. Suicide rates are highest amongst those who would be described as mildly autistic.
2. Low functioning is often used when a person has an additional learning disability or is unable to speak. IQ is unrelated to autism, though it may affect one’s ability to mask. Not masking hopefully means that autism is spotted earlier and support is provided earlier (not always the case). It is better in my view to recognise that a person has a learning disability or needs support finding alternative communication to speech rather than a generic description of ‘low functioning’. This is the only way the appropriate support can be put in place.
3. Functioning labels lead to incorrect assumptions. If a person is intelligent enough to do a degree some assume that mistakes in other areas such as not being organised enough to meet deadlines is just laziness. It may be executive dysfunction and the person may need support with that. On the flip side I know people who have had their ability to understand underestimated just because they do not speak. Sometimes adults speak in front of non speaking children, for example, as if they also cannot hear or understand. Autistic people generally have what is known as a ‘spiky cognitive profile’ – we may excel in some areas whilst really struggling in others. This needs recognising or support needs will not be met.
4. It is important to recognise ability to function changes over one’s lifetime and even day be day or hour by hour. I know someone who would be described as ‘mildly’ autistic because they have two degrees, a family and a job. However, they make many mistakes at work due to executive dysfunction, have got through many jobs over the years, have difficulty speaking when they are tired or anxious and at times in their life have had big violent meltdowns. Most of the time their anxiety is extremely high so it does not take much additional stress for them to meltdown and stop functioning completely albeit temporarily. It would not have been so hard for that person to have ended up homeless, unemployed or in prison. Sometimes the difference between functioning and not is on a knife edge and circumstances and luck are a big factor. Attributing functioning ability all to the person makes it too easy to blame them when things go wrong rather than providing support.

This sort of simplistic language gets used everywhere in autism literature and support services and I can see the attraction as people want a quick way to describe someone whether that be in their school notes or in healthcare. I believe the risks of doing this outweigh the benefits. When supporting an autistic person you really need to get to know them and adapt support to meet their individual needs.

Here is an excellent comic that I often direct people to when talking about ‘the spectrum’ or functioning labels: The art of autism – understanding the spectrum.