Friday, March 23, 2018

The Problems with Functioning Labels

Talent Show - Summer Academy 2014
Photo © City Year | Flickr/Creative Commons
[image: Photo of a Black young man with short hair, close-cut beard, and
glasses, holding hands out to sides while on stage during a talent show.]
Finn Gardiner

Many professionals talk about autistic people’s “functioning labels.” Functioning labels are a way to describe how well people learn, take care of themselves, and live in the community. People will often talk about “high-functioning” and “low-functioning” autistic people when they are describing them. Even though people who talk about high-functioning and low-functioning autistic people often mean well, these labels are not accurate for many people. Functioning labels do not always relate to people’s real skills and can be based on hurtful stereotypes about autistic people. They also assume that people’s skills cannot change over time. 

Many people use people’s intelligence to determine whether they are high-functioning or low-functioning, but many autistic people’s daily living skills are not affected by how intelligent they are. Someone can learn quickly and have a hard time with daily living skills, while someone else who learns more slowly can find the same skills easy most of the time. Using these labels can make it hard for people to get services. If you do not have an intellectual disability, agencies may tell you that you are high-functioning and do not need help, even if you’re struggling to stay fed, clothed, and clean. If you do have an intellectual disability, you may be told you are low-functioning even if you don’t need as much help with daily living skills. 

Sometimes people can call the same person “high-functioning” and “low-functioning” at different times in their life. People have said I was “high-functioning” for most of my life, but when I was very young and was non-speaking, they would have said I was “low-functioning” because they thought I had an intellectual disability. Saying that people are “low-functioning” is especially hurtful, because it means that some people will have low expectations of you and will not expect you to learn, grow, and pick up new skills. 

When some doctors thought I had an intellectual disability, one of them said I would never learn anything. I do not have an intellectual disability, but even if I did, I would still be able to learn things. Everyone can learn and pick up new skills over time, whether or not they have an intellectual disability. This is part of why saying “low-functioning” is hurtful. 

Also, people’s functioning can change over time. People can need more or less support with daily living skills for several different reasons. Sometimes they can be having a bad day, or be depressed, or be going through major life changes that cause them stress, or it could be the opposite. Feeling good about yourself may make it easier to do tasks that would usually be hard for you. A “high-functioning” person may be having a bad day and have a hard time with self-care tasks like bathing, cooking, shopping, and dressing. A “low-functioning” person can have a good day, week, or month and do relatively well with the same tasks. 

Instead of talking about functioning labels, we should talk about the specific kinds of support people need. Professionals should treat autistic people and other people with disabilities as individuals that have their own needs instead of just saying that they are high- or low-functioning. Everyone is different and deserves help that will make sure they live the best life they can.