“If we aren’t supposed to use ‘high or low functioning,’ what else can we use to describe that person?”
This question is always frustrating to me. It typically comes from well-meaning people, but I have a hard time understanding why they need to assign labels to people that aren’t like them. Within the neurodiversity movement, we do not use functioning labels.
Autism is just autism. And autism is human. I’m an autistic person, not a neurotypical person with some kind of disease that can be classified or labeled.
While every autistic person is different, there is no mild, severe, low or high functioning autism. We’re just autistic people with a wide variety of strengths, support needs, interests, personalities, opinions, etc.
Some argue that by not using functioning labels, we’re pretending that non-speaking autistics or autistics with high support needs don’t exist. This couldn’t be further from the truth. We’re simply saying we’re all autistic. We’re all human. There is no us and them—just us. We value every autistic person and view them as our equals, even if some need more support.
Because autism is diversity of the human condition—a totally normal variation in human neurology—people need to realize that they’re describing a complex human being, not a medical disorder.
What if I described you as a low functioning parent (based on MY observations) because you didn’t cook 3 meals a day, had dirty dishes in your sink, laundry everywhere, and you didn’t play with your kids enough? What if the truth is that you’ve been sick and therefore unable to do the things I mentioned? How wrong would I be to call you low functioning?
What if I called you a high functioning parent because from an outsider’s perspective, it looks like you’ve got it all together and you’re parenting with ease? What if it’s taking every ounce of energy you have, every dollar you make, and you desperately need help…but you won’t get it because you’ve been deemed high functioning?
Functioning labels are never accurate. They fail to capture who we are as humans—our likes, dislikes, strengths, struggles, personalities, experiences, etc. High functioning implies that a person doesn’t need support and if they aren’t keeping up it’s because they’re just lazy. It places unfair and inaccurate expectations on that person and prevents them from getting the help they need. Low functioning overlooks a person’s strengths and unique qualities, while assuming they aren’t competent and can’t live rich, fulfilling lives. They may also lack the support they deserve because others assume they won’t benefit from it. Both labels are wrong.
So to answer the initial question: instead of labels, be descriptive. Neurotypicals can’t be put into neat, categorized boxes and neither can autistic people.
Sam is autistic and enjoys drawing and learning about animals. She loves talking about her dog and is learning to care for him more independently. She's great at teaching herself new skills when given the time and freedom to figure things out. Sam communicates verbally most of the time, but sometimes she needs AAC. Sam prefers having a couple close friends that she’s comfortable with and needs time to herself to indulge in her interests and recover from her overstimulating school environment. When overwhelmed, Sam will shutdown. This isn’t intentional. Sam can focus more easily and is less overwhelmed when using noise cancelling headphones in the classroom. Because of interoception issues, Sam may need reminders to go to the restroom throughout the school day to prevent accidents. And because of fine motor difficulties, she needs help opening her lunch, tying her shoes, and buttoning/zipping up her clothes.
Yes, that’s longer and takes more effort than “high or low functioning,” but look how much you learned about Sam in that short paragraph. By being descriptive, both her strengths and needs were acknowledged, as well as interests that are important to her. Would high or low functioning tell you any of that?
Kaylen Randall, MS, CCC-SLP received her degree in speech-language pathology from the University of Louisiana at Lafayette. She is an openly autistic SLP and owner at Randall Therapy & Wellness in Pensacola, FL. In addition to providing language and literacy intervention, she is dedicated to educating parents and professionals about autistic experiences, while providing identity-empowering services for autistic individuals. Additional information about Kaylen and her practice can be found at www.facebook.com/RandallTherapyandWellness.