The Problem with Autistic Functioning Labels

As more neurotypical (non-autistic) people become aware of the autism spectrum, they struggle to understand how one autistic person can have a PhD, career, and pass as neurotypical, and another struggles with managing their own self-care (needs diapers, needs someone to look after their hygiene and food needs) and cannot communicate verbally. They want autism to make sense since other neurological conditions seem to fit neatly into a box. Struggling to qualify the diverse expression of autism across the spectrum, psychologists and neurologists came up with the idea of a linear spectrum with “high functioning” and “low functioning” autistic people on either end of this spectrum. Clearly the PhD autist is high functioning and the nonverbal autist who is unable to care for his own hygiene is low functioning.

Wrong. What if I were to tell you that the verbose PhD autist was nonverbal until she was nine years old? She still can’t tie her own shoes. She orders take out most nights because she has a tendency to burn herself when cooking. What if I were to tell you that the nonverbal autist communicates via typing his thoughts on a tablet? That he is of perfectly normal intelligence, is well read, and does the family accounting because he finds number crunching easier to manage than his parents do? Clearly by the standards of the linear spectrum of autism, the “high functioning” autist has some traits that could easily put her into the low functioning end of the spectrum. And conversely, the nonverbal autist has traits that could put him into the “high functioning” end of the spectrum.

First of all, it would help if people understood that autism is not a linear spectrum. Like the image at the bottom of this post, autism is a circular spectrum, and where an autist falls within each segment of the spectrum is unique to their personal genetic makeup. One person may be struggling greatly with their executive functioning, but have little to no struggles with their motor skills. Another may have terrible struggles with language and sensory perception, but have no struggles with perception. Even among autistic families, great variation can occur. It is these variations within the circular spectrum model that lead to the great variations in the expression of autism from individual to individual.

Functioning labels don’t help identify the needs and strengths of an autist; they identify whether or not the autist is a burden to society. By using functioning labels to try to determine how “bad” someone’s autism is, you negate the strengths of the autists deemed low functioning, and you invalidate the struggles of the autist deemed high functioning. It can’t be stressed hard enough that using the term functioning at all reduces the person to whether or not they have value by what they can materially provide for society.

If you have to define how “bad” someone’s autism is at all, reframe it as what do they need to live a healthy, happy life. The PhD autist in my example has low support needs. She gets by mostly on her own, but does need help occasionally from friends and family when she encounters a challenge that is more than what she can easily take on all alone. The nonverbal autist has higher support needs. In order for him to stay happy and healthy, he requires more direct and immediate assistance with his hygiene and nourishing himself.

Reframing functioning labels to be support needs turns the focus away from what society thinks and wants and puts it back on what the individual needs to grow and thrive. Being in a position where their needs are met, they will find their own ways to contribute, whether it is through science, art, service, or just bringing joy to themselves and others. In that sense, autists are just like everyone else.

Credit for the image goes to Rebecca Burgess at The Art of Autism (https://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/?fbclid=IwAR2yVMgtDaftxSidcv3zeV70AnfhZp15doIfckLhv0aNfGYwpfB2glsR3Xo)