What's The Big Deal?
A common response autistic people get when disclosing they are autistic, is for the other person to remark on how “high-functioning” they are. It is implied that this is much better than being “low-functioning”, and that their autism can’t really be that bad. Because hey, isn’t everybody on the spectrum somewhere?
These “functioning labels” are harmful to autistic people and have been used in the past to keep us from receiving services we need.
Here is what three autistic people have to say:
When I take the very vulnerable risk of disclosing to someone that I have autism, especially if it’s a person who is socially progressive or in a field working with autistic individuals, it really hurts me to have them respond by bragging on how high-functioning I am. It’s like a paradigm in our relationship suddenly shifted, where I’m an other—a case study or a set of symptoms instead of a human being. I don’t understand why it’s considered acceptable to comment on how appropriately someone is existing in the world.
I think that high-functioning is what people say when they cannot immediately see that you are autistic. Or say, when things are ok with you, that you are living within fictitious NT boundaries of normal behaviour. I hate the idea of this. It sounds to me like, “You are just about okay, unlike the rest of them!” I am very, very autistic. I have a degree and am good at various things, but this does not make me high-functioning. I struggle a lot with everyday life as do all autistic people. IQ is not a measure of autism.
–Leo Yeats, artist, UK
Hearing the “high-functioning” label is invalidating because it dismisses the sheer cost that “functioning” can have for someone with autism. I may be lucky enough to be able to work, but putting on an act that I’m not autistic all day professionally means that for the rest of the week I have no energy left for cooking, hobbies, or talking to anyone. I work three days a week, and spend the other four recovering and isolating from everyone I know just to do it again. That’s not functioning. That’s surviving.
–Rebekah, NSW, Australia
Kat Williams in her National Center for Mental Health article writes:
Functioning labels, though not a diagnostic tool, are allocated arbitrarily to identify someone’s communication methods and intellectual ability: those labelled ‘high functioning’ typically have no speech or language delay (or the delay is not significant), communicate through speech, and have normal to high intellect; and those labelled ‘low functioning’ typically do not use spoken language, instead using an alternative form of communication such as a picture exchange system (PECS), sign, or augmentative and alternative communication (AAC), and/or have an intellectual disability.
For those labelled high functioning, it can be incredibly difficult to get external support once diagnosed.
‘High functioning’ is not how an autistic person experiences being autistic, it’s how society experiences the autistic person. –Kat Williams, 2019
The American Psychiatric Association released the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-V) in 2013. In the United States and many other countries, the DSM-V is the reference guide healthcare professionals use to diagnose autism and other mental and behavioral conditions. It contains three different severity levels of autism with the highest level three requiring “very substantial support”.
Problems With Functioning Labels
- Labels Don’t Reflect Reality: Autistic people’s abilities to function constantly change. Everyone has had a bad day where they can barely do anything. Autistic people are no different, and their abilities to function often fluctuate dramatically during a single day.
- Labels Limit Who Gets Accommodations: Unless you are considered “low functioning” then automatically your accommodation needs will get ignored. It assumes “low functioning” people lack intelligence so they get denied opportunities, and “high functioning” people are assumed to be normal and denied support.
- Labels Are Not Helpful: Slapping a label on someone does not tell you anything useful about their specific needs.
- Labels Are Often Ableist: Instead of accepting people how they are, people are taught to believe being disabled is bad. So being labeled “high functioning” must be much better than “low functioning”.
- Labels Divide Us: People can use labels as a means to silence autistic voices they don’t approve of.
Studies Show Functioning Labels Are Harmful
Recent studies have shown that:
High cognitive “function” had no connection to high function in other areas of life — an autistic person with high cognitive abilities can struggle significantly socially or emotionally.
–Dr. Gail Alvares, 2019
In 2022 People Are Still Trying To Use Them
The National Council On Severe Autism (NCSA) wants to add a new category to the DSM-5. Can you guess what they want to call it? If you guessed “severe autism” you are right.
- ^Vance, Terra (2018-09-10). "Function Labels: And We’re Supposed to be The Awkward Ones". Neuroclastic Retrieved 2022-10-26.
- ^Williams, Kat (2019-04-04). "The Fallacy of Functioning Labels". National Center for Mental Health (NCMH) Retrieved 2022-10-26.
- ^IACC Subcommittees "Severity Levels for Autism Spectrum Disorder". Interagency Autism Coordinating Committee (IACC) Retrieved 20-10-26.
- ^Fabian, Renee (2019-06-19). "New Study Agrees Harmful Autism 'Functioning' Labels Are Harmful". The Mighty Retrieved 2022-10-26.
- ^NCSA Board of Directors (2021-10-08). "The Need for Categorical Recognition of Severe Autism in the DSM". National Council On Severe Autism (NCSA) Retrieved 2022-10-26.