I’ve been researching what little support is available to autistic adults in Alberta, and it’s a bit discouraging how often I’ve heard professionals using functioning labels to identify who is eligible to access these resources.
“If you’re high-functioning enough that you can live on your own and keep a job, you wouldn’t qualify for any programs or services,” I was told. “Those people don’t really need any extra help.”
A person with autism is still a person with autism, no matter what kind of functioning label you put on them. The thing about autism is that it can be totally invisible – you don’t know what’s going on inside of a person’s brain. Functioning labels are a simple way of saying whether or not you think an autistic person can pass for neurotypical, taking into account a number of somewhat arbitrary factors including verbal ability, ability to live independently and academic ability.
Just because someone is capable of feeding themselves or uses words and sentences to communicate doesn’t mean they are “high-functioning” – they may be struggling in ways that you can’t see. And similarly, just because someone is unable to do those things and needs lifelong care doesn’t mean they aren’t “high-functioning” in other capacities. While not autistic, Stephen Hawking is a great example of someone with a brilliant mind trapped inside of a disabled body, who continues to provide valuable contributions to society.
In fact, someone’s ability to be “functional” can vary from day to day. Just like in neurotypical people, an autistic person’s behaviour can depend on mood, stress, illness, events in their life, being hungry or tired or upset, or even who they are with. On a bad day or in the middle of sensory overload, even the most self-sufficient autistic person could be given a “low-functioning” label.
The biggest issue I have with functioning labels, though, is that they stress the “ideal” for an autistic person is to be able to pass as neurotypical, which is sadly somewhat true. If an autistic person is able to present themselves as “normal,” they will be treated that way – as a person with “valid” thoughts, feelings, weaknesses and strengths. When their autism is visible, however, it’s much easier to overlook these thoughts and feelings because they’re too “low-functioning” to really “know what’s best.”
In the end, these labels aren’t doing anyone any favors. Autistic people are either considered “low-functioning” and therefore unable to speak for themselves, or they are too “high-functioning” to really count as autistic. When you’re “low-functioning,” people ignore your strengths, and when you’re “high-functioning,” they ignore your weaknesses. Nobody wins.
