The Problem of Function-based Labels
A major debate in the autistic community, and between the autistic community and non-autistics, is the use of the labels "High-Functioning Autism" and "Low Functioning Autism". These labels are used in a variety of contexts. You may also see them abbreviated to "HFA" and "LFA", or "high-functioning" and "low-functioning". Recently, a significant proportion of the autistic community has expressed that these labels are misleading, outdated and unhelpful due to the way they influence the perception of autistic individuals.
The crux of the problem is essentially that people labelled as "low-functioning" are often underestimated and held back from reaching their full potential, and people labelled "high-functioning" are presumed to be somehow 'less autistic' and their support needs are therefore overlooked. A huge part of this is down to the misunderstanding of where these labels originate from and misinterpretation of their meaning. Contrary to popular belief, these labels do not refer to how well an autistic person "functions" in day to day life. The "functioning" described by these labels is so-called "cognitive function"- essentially, the person's IQ. "High-functioning autism" was a term developed to describe autistic people with an IQ of 70 or greater (with an IQ of 100 being the population average). "Low-functioning autism" is a term applied to autistic people with an IQ below 70.
In addition to being semantically misleading, these labels are also problematic because they do not take into account the breadth of a person's intelligence and cognitive function. A person may be highly intelligent but perform poorly on an IQ test due to specific difficulty such as dyslexia. A person's cognitive function may also fluctuate over time due to factors such as illness, stress and practice. This can lead to a person being labelled as low-functioning despite a significant intellect. A perfect example of this is Canadian journalist, author and advocate Carly Fleischmann. Carly is a gifted writer and interviewer, with significant skill at conducting insightful and funny interviews. However, until the age of 15, Carly was considered to be "cognitively delayed" due in no small part to being autistic and non-verbal. When she began communicating via text, it was clear that she is an astute and intelligent woman and her IQ tested at 130+ when more accessible approaches were used. Clearly, this demonstrates the pitfalls of labelling autistic people in this way.
Other words are also commonly used in this way, which further contribute to the misunderstanding. For example, I am often referred to as having "mild" autism, as opposed to the "severe" autism of other autistic people. My standard response to this has become "it's mild for you". People don't seem to realise that the extent to which they experience my autism is vastly different from the extent to which it affects me. Remember: autism is a developmental disorder. It is present from birth and literally affects the way a person's entire cognitive structure develops. It affects every aspect of life for every autistic person. The difference is therefore not in how much we are affected, but how that effect presents itself and our respective abilities to adapt. Further variation occurs when we take into example the areas in which each person adapts more easily. So for example, two autistic people can both experience difficulties in executive functioning (the ability to plan and sequence tasks) and in sensory sensitivities, but each may adapt more easily to one than the other. So, the person who can adapt to their sensory sensitivities but less so to their executive dysfunction may be seen as 'high functioning' in that they don't stim a lot in public and 'look' more neurotypical, but they may be unable to initiate or complete the essential tasks to live independently. In contrast, the person who struggles the most with their sensory sensitivities may be viewed as 'low functioning' because they need ear defenders and to stim a lot in public, but may find it easy to compensate for their executive dysfunction and be able to live independently without difficulty. Sadly under the current system, the supposedly 'high functioning' individual would be considered to have lower support needs, and so would not be given the help with their executive dysfunction that the supposedly 'low functioning' individual would be given with their sensory difficulties, whereas the supposedly 'low functioning' person would be consistently underestimated in terms of their potential compared to the supposedly 'high functioning' person. This further widens the gap between their adaptive abilities and leads to a huge bias in quality of life and treatment.
This further illustrates the key issues of functioning labels:
How do we define functioning? Is it a measure of the ability to live independently? Or is it one's ability to look as 'non-autistic' as possible in public?
However we measure 'functioning', it will vary hugely over different areas of cognition. A key feature of autistic spectrum neurotypes is a so-called 'spikey profile' of cognitive strengths and weaknesses, all of which affect various aspects of perceived 'success', including social skills, independent living, and self-regulation.
These labels directly affect the treatment that autistic people receive and can lead to those labelled as 'low functioning' having their strengths underestimated whilst those labelled 'high functioning' have their support needs underestimated.
It raises the question: why, with all the knowledge we now have about the nuances of the autistic spectrum, are we still relying on outdated concepts to categorise autistic people?
From a personal perspective, these labels have been a mixed bag for me. I was not diagnosed until later in life, but it is clear that at school there was some element of recognition that I was in some way atypical. I was labelled 'bright', even 'gifted', as many autistic people who are labelled 'high functioning' are. However, this led to huge gaps in my abilities and even my education being overlooked. I excelled in language-based subjects, but even now I can't remember my multiplication tables without manually figuring it out. I could read at the age of 4, but I couldn't tie my shoelaces or tell my left from right until I was at least 10. I performed exceptionally in class, but I can count on one hand the number of pieces of homework I remembered to hand in over my school years, due to debilitating executive dysfunction. Even now, I'm excelling in my career, but require adaptations to my home to prevent living independently being a huge source of stress. Due to my ability to mask socially and keep my stimming to a minimum, many people refer to me as 'mildly autistic' and 'high functioning', but this leads to some major difficulties being ignored and the support I need to truly thrive being denied to me. This is why, although many non-autistic people seem to think that telling me I don't 'look/seem autistic' is a compliment, it's anything but. I am as autistic as any other autistic person, my strengths are simply more obvious than my difficulties. This means that, whilst my autism may seem mild to you, to me it certainly is not. On behalf of a great many autistic people, allow me to tell you that this is not a compliment. For it to be a compliment, I would have to view my being autistic and living openly as a negative. And I don't.
I hope this week's feature has given a clearer picture on the issues of functioning labels, and prompted some thought about the way you approach conversations about support needs with autistic people. Feel free to share your experiences in the comments, and as always thank you for reading!