Functioning Labels: A Lost Opportunity

“‘High functioning’ is used to deny support. ‘Low functioning’ is used to deny agency,” points out Autistic activist Ellen Murray. Research shows that in addition to being rather inaccurate in summarizing abilities and needs, stigmas surrounding functioning labels negatively affect the perspectives of many service providers. So why use them, especially when there are better alternatives? To knowingly talk about a person in a way that is both incorrect and harmful says many things about one’s attitude toward that person. None of those things are positive. Those who “walk the walk” of caring about the neurodivergent people in their lives do so, in part, by expanding their sentences to focus on barriers and accommodations rather than on overgeneralized “levels” of “functioning” or “severity.”

Per the social model of disability, an environment that is not compatible with a person’s needs creates an access barrier. We can use our opportunities to communicate more wisely, then, by sharing examples of situations in which environmental expectations can be expected to create barriers and accommodations to mitigate those barriers.

For example, a person might communicate with an AAC when meeting new people. Doing so may provide additional time and support for organizing thoughts, and the use of the AAC gives people a visual reference that the person is working on a response, preventing them from wondering whether they need to get the person’s attention or repeat their question if an answer does not come right away. As such, this accommodation serves to support executive functioning and communication while also mitigating other’s attitudinal biases that could negatively impact the interaction.

Providing other examples of situations that might be overwhelming or otherwise difficult to navigate, in tandem with information about accommodations that might counteract these barriers, is crucial for putting the onus on the environment to be accessible rather than on individual people to deal with a world that has not been set up for them. It also provides opportunities to make the world more accessible. When we reject functioning labels and move in the direction of environmental barriers and support needs, we make room for a shift of this sort. Our communication about people and their needs should be used to describe systemic barriers and accommodations to improve accessibility unless we, too, wish to run the risk of denying support and agency.