Functioning Labels

Functioning labels are useless for the autistic person.

More Problems with Functioning Labels

Functioning labels are harmful constructs.

The thing so many Autistics have pointed out about functioning labels is that we are called “low-functioning” by those who choose to ignore our strengths and “high-functioning” by those who choose to ignore our challenges. There is no official definition for these functioning labels. I’ve noticed researchers defining what they mean when they say they are studying a low functioning or high functioning population, and the chosen definitions vary from study to study, complicating meta-analyses. The labels are meaningless in an objective, scientific sense.

Several years ago I was looking for some help and was rejected by one agency, which said I was too high functioning and referred me to another agency. That second agency rejected me for being too low functioning. I concluded that function labels are what others use to try to control us and act as gatekeepers to the things we need to survive and thrive. Functioning labels are weapons used against us.

On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies — THINKING PERSON’S GUIDE TO AUTISM

Children grow up. Autistic children are children. The development curve might have more turns, but it tends towards the same end point. Some parents use functioning labels as a way to show how many challenges one autistic has compared to another. The more challenges there are, the lower the grade is. These parents are missing the point. When we experience hard moments, it feels bad no matter how you grade us. Everything can simply stop “functioning” even if we are said to be “high-functioning”.

Aside from the fact that these labels are arbitrary, divisive, imprecise, and inaccurate, they just don’t make sense. As someone (not me) brilliantly stated, “Low functioning means that your strengths are ignored; high functioning means that your deficits are ignored.”

You don’t speak for everyone = be quiet. What about low functioning people? = be quiet. You’re high functioning = be quiet.”

Is Stephen Hawking low-functioning? Is being able to tie one’s shoes the pinnacle of human achievement?

“When mothers and fathers hear the term low-functioning applied to their children, they are hearing a limited, piecemeal view of their child’s abilities and potential, ignoring the whole child. Even when a child is described as “high-functioning,” parents often point out that he continues to experience major challenges that educators and others too often minimize or ignore. When professionals apply these sorts of labels early in a child’s development, it can have the effect of unfairly predetermining a child’s potential: if “low,” don’t expect much; if “high,” she’ll do fine and doesn’t need support.”

Uniquely Human: A Different Way of Seeing Autism

Being called high-functioning can invalidate the daily struggles of people with autism.

Being called low-functioning can be hurtful and stigmatizing to those with autism who need more help with their disability.

The autism spectrum isn’t a linear spectrum between very autistic and a little autistic but rather a wheel with many colors and shades.

Why Many People With Autism Dislike Functioning Labels | Psychology Today

There is a long history of functioning labels being used to divide the Autistic community, both externally and internally. Externally, function labels get leveled at us from the autism community. (The Autistic community is the community of people who are actually Autistic. The autism community is a larger community comprised of everyone with any stake in autism at all: Autistic people plus non-autistic parents of Autistic children and adults, doctors, researchers, teachers, and so on.)

The autism community gives us narratives about functioning labels like:

  • Autism should never have been made so broad. Those high-functioning people aren’t really even autistic and they are taking away money and resources that could be going to help children like mine.
  • High-functioning autistic people aren’t disabled and we should help them because they come up with great ideas that will save the world. Low-functioning autistic people, however, are suffering and disordered and we should keep looking for a cure to help them.
  • People with Asperger’s (a.k.a. mild autism, a.k.a. high-functioning autistics) have no excuse for not working. If they are on disability they are just scamming the system. Only low-functioning autistics deserve disability.
  • High-functioning people should never be institutionalized. Only low-functioning autistics need to be in institutions and sheltered workshops.

Sometimes Autistics who have internalized the ableism and division that we hear every day from the world around us echo these divisive beliefs. I have met people who refer to themselves as “high-functioning autistics” because they are ashamed or afraid that if they just call themselves “autistic” they will be accused of lying or they will be mistaken for “somebody who might have to wear adult diapers and maybe a head-restraining device,” as one leader in the Asperger’s community said when he heard the DSM-5 was going to remove Asperger’s syndrome as a distinct diagnosis. Others have held on to the Asperger’s/Aspie identity despite it no longer being an official medical diagnosis.

On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies — THINKING PERSON’S GUIDE TO AUTISM

Those of us that are perceived as high-functioning are just very good at masking. Masking is a skill we learned in childhood and usually is the result of going through treatments that taught us social skills or parenting, and socialization that taught us any time we did anything that made us happy or comfortable is wrong. We were taught to mask by growing up in a world in general that has sent us the message that all our natural behaviors are aversive.

Why Many People With Autism Dislike Functioning Labels | Psychology Today

Further reading,

Published by Ryan Boren

#ActuallyAutistic retired technologist turned wannabe-sociologist. Equity literate education, respectfully connected parenting, passion-based learning, indie ed-tech, neurodiversity, social model of disability, design for real life, inclusion, open web, open source. he/they