I have been told that I am a ‘high-functioning’ Autistic.
90% of the times that people try to apply this label to me, it is a last ditch attempt to try and get me to stop talking. The words roll from their tongue or jump from their keyboards to try and convince me that I don’t understand, that I am not able to pass comment, that I cannot possibly grasp autism in the way they can (it will be of no surprise to anyone that the majority of these assertions come from non-Autistics: it’s a ‘you are high-functioning, my *insert family member* is severely low-functioning’ type of script). The other 10% of times is split between pathological labeling and discussions with self-labelled ‘high-functioning’ Autistics.
This whole concept makes me deeply uncomfortable. So I would like to talk about it.
In preparing for this post, I read a lot of amazing articles and essays. I found myself having a firmer grasp of exactly why people’s insistance on bestowing this title on me made me so unhappy. I also found myself drowning in the comment sections – some of which had really interesting discussions between Autistic people, but many in which the voices of Autistic people were being completely overwhelmed by parents, guardians and other assorted family members extolling the virtues and ‘truth’ of functionality labels.
As a result, I would like to approach this from my own perspective; why it upsets me, why I find it unhelpful, and why I would kindly prefer people just respect my wishes (and those of others) and leave this ‘grading’ language at the door.
Firstly, I would like to approach the binary connotations of the ‘high-functioning’ and ‘low-functioning’ labels. The definitions provided by many different people I witnessed on internet forums and websites were inherently unclear: it refers to how well you ‘function’ in society, it’s about whether you can take care of yourself, it’s about how well you ‘pass’ as neurotypical, it’s about what your IQ is, or it’s a variation of several different classifying factors. Here, the functionality model reaches its first stumbling block. Many Autistic people that I know, including myself, could easily be fitted into both categories.
For example, on the one hand, I am able to communicately incredibly well in the traditional verbal model. I have a degree in English Literature, and I perform confidently on stage. I have a front facing full time job, requiring that I communicate effectively with a wide variety of people. I’m damned good at it. I have friends that I can talk for hours with. I commute to a big city and back every day. On this particular hand, I am incredibly ‘high-functioning’.
On the other hand, I struggle in social situations. I can scream and shout and cry. I have descended to pacing across rooms, obsessively calling my mum and leaving increasingly incoherent voicemails. I smack myself across the head and legs, bite the insides of my cheeks, pick obsessively at my arms and chest until my upper torso is covered in pockmarks and scabs. I cannot live on my own (we’ve tried), and probably never will be able to. So, taking a glance at the palm of this hand alone, people would probably label me as ‘low-functioning’.
Kit Mead, in a tumblr post about the failure of functionality labels, illustrates this beautifully by telling the stories of two seemingly different Autistic characters:
Guess what? A & B are the same person. They are also both me. Functioning labels are not indicative of our abilities as Autistic people. Some days, I have less spoons than other days and less spoons than other people.
Labels that refer to how well we ‘function’, in whatever capacity that particular person defines ‘functioning’ and what environment we are supposed to be ‘functioning’ in, serve to divide Autistic people into two distinct groups: the ones that ‘can’ and the ones that ‘can’t’. This approach is startlingly dangerous, even if it’s not what the user intended: they minimise the difficulties and support needs of the ‘high-functioning’, whilst overlooking the skills and abilities of the ‘low-functioning’. Some of us do not get the support or adjustments we need because we are not ‘severely’ Autistic, and some of us do not get the chances and opportunities to develop into themselves because they are too ‘severely’ Autistic.
There is an inherent ‘bad’ connotation in a binary of ‘low’ and ‘high’ – a high grade is better than a low grade, a high score is better than a low score (unless you’re playing golf, but I reserve the right to be completely clueless about golf). I refuse to betray my Autistic siblings by allowing this level of connotational grading to sneak through. Many people in our community need an awful lot more direct support than I do, and many experience a greater level of comorbidity along with their Autism, but to no extent does this make them ‘lower’ than me. Nor am I inherently ‘higher’ placed than them. We are all Autistic. Our experiences differ because we are all different people. But we are still all Autistic.
Many a time, the experiences and activism of those stamped with a ‘high-functioning’ label will be shot down by non-Autistic people. It is decried that we are trying to speak for ‘low-functioning’ Autistic people, and we definitely shouldn’t be doing that because we just don’t understand what it’s like. Please note that these objections rarely come from those being labelled as ‘low-functioning’, but from those who exist in close proximity to them. Who then is best to ‘give voice’ to these people, who we are told cannot communicate themselves?
The answer is that ‘low-functioning’ Autistic people should be given their own voice. An individual who cannot communicate in a traditional verbal way should not be assumed to be incapable of communication at all. An individual with higher support needs should not be assumed to have no voice of their own that is worthy of being heard.
Perhaps one of the most affecting pieces of writing I came across in my internet trawlings was this blog entitled ”You don’t speak for Low-functioning autistics’ by Lysik’an. She is an Autistic individual who is classed as ‘low-functioning’ by many people, who cannot communicate verbally, who has higher support needs in some areas, and she makes some sharp and heartfelt comments against non-Autistics using her to ‘prop up’ their silencing of other Autistic people:
The “high functioning” autistics that argue for rights for me DO speak for me. In ways I cannot fight they defend me. In places I cannot go because of my fears, they stand for me. In groups that scare the poop out of me, they clean up the mess for me and stand for me.
You, who are not autistic, do not stand for me. Do not tell those that are capable of fighting your hate that they do not speak for me. They do.
It is important that these voices be uplifted by all of us, and we should push back against anyone outside of our community seeking to use one of us to shoot down another. Autistic voices are Autistic voices, societally perceived functionality nonwithstanding.
Unfortunately, I have occasionally seen other Autistic people separating themselves from those they deem to be ‘low-functioning’ rather than standing with them. I struggle internally as to whether be angry with them directly, or to feel sad that they have been so pulled into the binary narrative of functionality. Most of the time, I curse the ableist social hierarchies that enforce this kind of separation between us based on specific ‘ability’ categories. Some of their assertions whiff of a defensive ‘oh we’re not like them’ mentality, and that hurts everyone.
There are some autistics who were told, as children, that they are much better than every other autistic because they are “so high-functioning”. Some of them grew up to become “Aspie/Autie supremacists”, which is as bad as the term implies.
– ‘More Problems with Functioning Labels’ by Amy Sequenzia.
The language of ‘high-functioning’ and ‘low-functioning’ serves to further these divisions, creating ‘us’ and ‘them’ out of what should be a ‘we’.
That is not to say that every Autistic person has the same experiences. Of course we do not. We are all individual people living individual, strikingly diverse lives. Some of the traits that come with neurodiversity may be different in different people, and some people in our community may experience more difficulties and suffering dependant on both their environment and any comorbid symptoms (I, for example, have suffered with severe mental health problems in the past, and am also on the receiving end of some pesky gastrointestinal problems that a lot of us can relate to). We are, however, all Autistic.
Functionality labels are, in my opinion, unhelpful and divisive. Although some Autistic people may find use in them, I urge everyone to examine where this comes from and whether there are alternatives available that do not separate us on such subjective ableist terms. I am personally deeply uncomfortable with them, and have experienced such labelling largely in terms of shutting me (and other Autistic activists) down (it’s assumed that we must be, in their eyes, ‘high-functioning’ in order to be posting or communicating in the first place). It divides into ‘cans’ and ‘cannots’; it overlooks the difficulties of some and the abilities of others; it forces us into two groups, splitting us down the middle when we should be coming together.
The language of functionality doesn’t function because Autism is not a binary.
Autism is a spectrum. It is diverse, colourful, unlimited, multi-faceted, and mind-bogglingly far-reaching.
And it’s time the language the world uses reflects that reality.
Some links that were endlessly useful when writing this: