Where the Vocabulary of Autism is Failing

In studies of autism, the term ‘high-functioning’ is often used to describe a person with autism who scores above 70 or 80 on intelligence quotient (IQ) tests. Scientists sometimes exclude those who score below this cutoff from their autism research because the participants may have difficulty following instructions or completing the study.

But relying on IQ is a crude approach, says Peter Szatmari, the chief of the Child and Youth Mental Health Collaborative at the Center for Addiction and Mental Health and the Hospital for Sick Children in Toronto, who leads the long-term Canadian study. “It’s not a measure of functioning; it’s a measure of whether or not they’ve got intellectual disability,” he says. “It doesn’t reflect how kids with autism do in the real world.”

.. But the label can trap children in a category that is often stigmatizing. “The term ‘low-functioning’ is just awful,” Lord says.

.. “Someone could be very bright on an IQ test but be very socially impaired and have enormous problems in forming relationships or managing within the environment because of sensory sensitivities or high levels of anxiety.”

.. Still, Alex’s parents worry that her ‘low-functioning’ label might be hindering her development. Alex enjoys swimming, for example, but her parents say they have seen advertisements for swim lessons that can accommodate only high-functioning children with autism.