I’m Not “More” Autistic Than Anyone Else: Why Functioning Labels are Harmful

While growing up, Amy had a very hard time socializing and was often nonverbal and catatonic. Amy would sit in one place in the same position for hours, maybe only changing it up to rock back and forth. Amy forgot to eat until she was starving. She forgot to drink water and became dehydrated. She was terrible at regulating her own body’s needs and would forget to pee until she was basically peeing herself, and always had trouble sleeping. Amy’s now an adult. She has a hard time expressing her own needs sometimes and doesn’t know how to ask for help, like if she can’t find something in a store. It takes all of her energy to do things that require a lot of senses at once, like shopping. If she is going shopping, she has to take a list and another person she trusts with her, because it is too hard to remember to purchase everything she needs and how to navigate the store and where her car is parked all at the same time. Amy experiences meltdowns if she has too many sensory things to process at one time, and during a meltdown she will scream, cry and be unable to move from the spot until she regulates. Amy frequently experiences burnout when she’s over-exerted herself and sometimes forgets where she is, feels hazy and confused and works basically on autopilot for days or weeks at a time.

While growing up, it was clear that Sarah had a knack for patterns. She could read a story and then create a story of a similar structure even though she had difficulty learning the formal processes of English in class. Sarah could remember endless facts and would recite them ad nauseam to her family and peers. Sarah created elaborate worlds from her own perspective, complete with characters, plots and fantasy elements and she would make drawings and 3 dimensional models to go with the stories. Sarah is now an adult. She’s in the Honors program at her college and is working on an honors thesis, where she essentially creates her own class for 6 credits and works with a professor one-on-one. Sarah is taking 6 classes this semester and has 3 part-time jobs and a 2-hour-per-week internship. Sarah tutors at the advanced level in several places on her campus. Sarah regulates a lot of her sensory issues well, and has turned a lot of her Sensory Processing issues into a running joke with her friends so she no longer feels self conscious about them. She has a lot of friends at school and a lot of people use the compliment, “You don’t seem like you have autism.”

Which person do you think is high functioning autistic and which is low functioning?

This is how a blog post on functioning labels that I read awhile back started out. (See that post here.) Now, what would you do if I told you that both Sarah and Amy are me? That’s right – I separated some of the traits that go along with my autism into what people imagine as ‘high’ and ‘low’ functioning. I am both Sarah and Amy. What does that tell you about functioning labels?

Functioning labels may seem practical, but the creators of the latest DSM have argued that autism and Asperger’s no longer need to be separated and there isn’t a need for functioning labels. It makes sense on a clinical and personal level to understand which traits of autism are more severe in a person, but the severity of each trait doesn’t tell you about the person’s overall function. Just because someone is nonverbal and stims a lot doesn’t mean they can’t function just as well as someone who talks and is able to hide their stims.

What you do when you use functioning labels is essentially set autistic people against themselves and against each other. Nobody wants to be told that they are too “low functioning” to do something – to live on their own, to attend college, to get  a job, to get married. And similarly, nobody wants to be told they are too “high functioning” for something – to be taken seriously for their sensory issues, to be believed to be autistic, to receive disability services.

Functioning labels don’t do anything except make non-autistic people feel comfortable that there’s a way to separate people from the “Big, Bad Autism” that is ruining all of our lives.

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