Functioning Labels

A Latina mother and her daughter with Down syndrome look at a computer screen together. The mother is smiling and pointing to the screen and the daughter looks as if she is about to as a question.

The FOE Mnemonic:

The difference between high functioning and low functioning is that high functioning means your deficits are ignored, and low functioning means your assets are ignored.

Laura Tisoncik

Functioning labels came from the diagnosis process – specifically from IQ scores. These labels were assigned, along with a diagnosis, to indicate a range of IQ scores:

  • IQ 90-110 (average IQ or “high functioning”)
  • IQ 80-80 (below average)
  • IQ 70-79 (borderline)
  • IQ 69 and under (intellectual disability or “low functioning”)

The First Problem

There are two big problems with functioning labels. First, we now know that IQ alone is not an accurate measure of a person’s abilities. For example, in autistic adults, we now know that adaptive skills are more likely to help us understand where a person needs support. Simply finding that a person has a lower IQ range and automatically identifying them as “low functioning” does not serve anyone.

Functioning labels, like IQ, also imply that there is a “normal” level of function for humans. We know this isn’t true. Every person is good at some things and not-so-good at others. In fact, the same person can be good at something in one environment and terrible at it in another. Which leaves us to ask, “what is normal, anyhow?”

The Second (Bigger) Problem

Even if the IQ-to-function relationship worked, there’s a bigger problem. Functioning labels pit people against each other.

For a person who is labeled “high-functioning,” this often comes up as service denial. People who are identified with “high-functioning autism,” for example, may be refused job coaching services they need to maintain regular employment.

People who are labeled “low-functioning,” on the other hand, are more likely to have their autonomy challenged. For example, people with “low-functioning intellectual disabilities” often live with guardianship arrangements that can restrict choices – even the choice to purchase a soft drink on an outing with friends.

What can we do?

This is usually the place where parents, families, and caregivers point out that they can’t advocate for their loved one unless they have words to describe how disability impacts them. You’re right – we need language to help advocate. But you can still do it with out functioning labels if you follow a simple recipe:

My loved one is good at X and needs help with Y.

The do’s and don’ts:

  • DON’T use functioning labels (this includes high-functioning, low-functioning, and profound/severe).
  • DO describe abilities and supports needed.
  • DO listen to people with disabilities and understand their needs (some voices to start with).

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