Functioning labels are the practice of labeling someone as "high-functioning" or "low-functioning." Some Autistic people and their loved ones dislike this binary for a variety of reasons, including what it implies about Autism and how it has been used to the detriment of Autistic people. However, the removal of labels presents issues for parents of low functioning Autistics in that they believe that services that are needed will not be provided to the appropriate level.
- Live independently, or appear to live independently
- Attend school or hold down a job
- Test as having an IQ above some number
- Hold an opinion
- Pass as neurotypical to onlookers
Researcher Michelle Dawson has examined various definitions of functioning labels in Autism research papers. She notes that many researchers used IQ thresholds, usually with cutoffs anywhere between 50 and 90. In the most traditional definition, one would need an IQ of 140 or 150 to be called high-functioning, but in reality it applies to everyone who has a higher than average IQ level.
The low-functioning label has been criticized for reasons including:
- The label treats them as somehow lesser and focuses on deficits. Amy Sequenzia notes that she and others can't take care of themselves, but "neither can Stephen Hawking." This is not to dismiss those who aren't geniuses, but to point out that self-care abilities are not everything.
- Their abilities may be ignored.
However the label is required for legal reasons in order to provide a definition within the laws governing human rights in most developed countries, and protect these vulnerable people from discrimination and abuse.
The high-functioning label has also received plenty of criticism.
- Children given this label may view themselves as superior to other autistic people, and grow up to be very disrespectful towards those who struggle more.
- It minimizes the need for support and may make it harder to ask for help.
- It places pressure to perform perfectly.
This however is easily prevented through educational efforts and properly applied adjustments.
Some Autistic people and their loved ones take issue with the simplification of Autism into a binary.
- It oversimplifies Autism. For example, one Autistic person may be able to write eloquently and earn a salary, but not be able to speak or take care of themselves. Another might socially pass as neurotypical but be unable to cross the street.
- Individual needs and abilities change over time.
- It can be limiting.
- Autism is not a competition and Autistic people should not be graded.
- It is not defined by the individual, so much as the prejudices and expectations of others.
- It places serious expectations on the Autistic person, either disappointing and negative low expectations or difficult and stressful high expectations.
However the converse has also applied where the base of the condition of Autism is the same and the Spectrum is a separate step, it is possible to move up and down the Spectrum, limits are primarily placed on Autistics by general society who also cause the competition issue.
Use as Silencing Tactic
Functioning labels are a convenient way for Autism Speaks and other organizations to invalidate the thoughts of Autistic people who disagree with them.
They could label the Autistic person as high-functioning, and then claim that the Autistic person cannot speak for the "real" Autistic people and should be quiet. Alternatively, they could label them as low-functioning, and then state that they aren't smart enough to understand and should be quiet.
It has been suggested that, instead of using a functioning label to describe a person, the person simply be called "Autistic." If more specificity is needed, one could describe specific needs and abilities.
The Caffeinated Autistic gives an example of a description that does not use functioning labels.
"Jane is a nonspeaking autistic who needs an aide to assist with feeding and dressing because she has difficulty with her motor skills."
The Thinking Person's Guide to Autism calls it as painting "a picture of a person rather than a disability." For instance, rather than calling Jimmy low-functioning, one would say
However, in order to obtain services and protect from discrimination, the label is needed. In Australia, Autism is provided for in the Disability Discrimination Act, defined as "a disorder...that results in the person learning differently from a person without the disorder..." and/or "a disorder...that affects a person's thought processes, perception of reality, emotions or judgment or that results in disturbed behaviour".
- Judy Endow: High-Functioning or Low-Functioning?
- Susan Etlinger: He's So Functional
- The Autism Crisis: Are you high or low functioning? Examples from autism research
- Amy Sequenzia: More Problems With Functioning Labels
- Autism Mind: Eliminate Labels High Functioning & Low Functioning
- Amy Sequenzia: When Autistics Grade Other Autistics
- Cynthia Kim: Decoding the High Functioning Label
- MOM-NOS: The high cost of "high function"
- Autism Spectrum Explained: On Functioning Labels
- Snagglebox: The Problem with Functioning Labels
- Emma's Hope Book: Wretches and Jabberers - Defying Labels
- The Mighty: Why I Hate Functioning Labels
- "Not That Autistic"
- Larry Arnold: A true story and a little lesson about functioning level (ASAN)
- Amy Sequenzia: Functioning Labels, Again
- The Caffeinated Autistic: I am a person, not a function
- The Thinking Person's Guide to Autism: An Autistic's Advice: Ten Tips for Teachers