Often used to describe where an individual may be on the spectrum, the terms low-functioning and high-functioning require more understanding and consideration.
Low-functioning and high-functioning are terms that describe how well a person with a disability can function in daily life activities and general participation in society. Some people with disabilities disapprove of these phrases because they feel it does not capture the complexity and nuances of functioning with a disability. Others feel that the phrases are patronizing because they imply that a person’s functioning is limited by their disability.
While functioning labels can be used for many kinds of disabilities, they are most often associated with autism.
Many people with disabilities do not want others to use functioning labels. They believe that functioning is not as clear-cut as “high” or “low” levels. Kat Williams, author for the National Centre for Mental Health, in an article titled "The Fallacy of Functioning Labels," wrote:
functioning’ varies, sometimes dramatically within a 24 hour period, and the labels themselves are pointless as they only really determine someone’s main communication method and whether or not they have an intellectual disability. Rather than using those labels and assuming what someone’s support needs will be, [people should] actually find out.
From Williams’s perspective, an individual’s level of functioning is not set in stone. It can continually change. Some people with disabilities also believe that people may have “high” functioning in one area, while they may have difficulties in others.
Some people believe that functioning labels cater to the needs and biases of non-disabled people, rather than people with disabilities themselves. Williams wrote that functioning labels are “not how an autistic person experiences being autistic, it’s how society experiences the autistic person.”
Jeremy Einbinder, for the New Jersey Council on Developmental Disabilities, expressed a similar sentiment about functioning labels:
The issue is not necessarily about how well someone can function. Sometimes it’s about how well someone appears to be functioning […] Therefore, the autistic spectrum has primarily served as a way to enforce social hierarchy and judge the supposedly inherent worth of human beings. This is done when people compare those on the spectrum to a supposedly objective (but actually arbitrary) standard. It is time to assess people’s needs in a way that accounts for their individuality. Just like the DSM-5 retired Asperger’s Syndrome, it may be time for the public to retire functioning labels.
In 2020, Planning Across the Spectrum wrote that functioning labels may harm people with disabilities. Writing that:
People who are deemed low-functioning tend to be heavily stigmatized, infantilized, and dismissed due to their inability to communicate verbally[...] People mourn their “lost potential”, yet ignore the incredible things they can offer.[...] High-functioning people, on the other hand, face devastating long-term consequences for upholding the facade of neurotypicality [behaving as if they are a non-autistic person].
For those labeled high functioning, it can be incredibly difficult to get external support once diagnosed. People do not take sensory processing differences, executive function, self-care skills, or co-occurring mental health needs into account. It is assumed that a person in this category is just ‘quirky’ – a bit socially awkward with no real struggles. When people deemed ‘high functioning’ talk about sensory overload, they’re often told to stop being so dramatic.
As Andrew Whitehouse, professor of autism research at the Telethon Kids Institute, stated, “the term completely disregards the difficulties these individuals [people labeled as “high-functioning"] have on a day-to-day basis.” He said that “policymakers have used the term to decide which individuals should receive services or funding rather than carefully evaluating individual needs."
From a historical perspective, Einbinder observed that “the autistic spectrum [of functioning levels] has primarily served as a way to enforce social hierarchy and judge the supposedly inherent worth of human beings.” Thus, “it is time to assess people’s needs in a way that accounts for their individuality. Just like the DSM-5 retired Asperger’s Syndrome, it may be time for the public to retire functioning labels."