Autistic folk spend an inordinate amount of time discussing the torture of labels on our clothes. In a discussion about sensory issues, right after we discuss how much we loathe the grocery store, the hatred of tags on our clothes comes up. It’s amazing how something so small, can invisibly create full body discomfort, and yet it does. A label left on can ruin an autistic’s day in less time than a change in routine. The slow irritation building as the label scratches your bare skin, then the fidgeting kicks in and sets the stage for the mother of all meltdowns if that label isn’t cut off and tossed immediately.
Becca Lory Hector, CAS, BCCS
Funnily enough, autistics respond similarly to labels on our person, especially labels that are inaccurate and misleading. Sometimes those labels are about misunderstanding our character, like when folks say autistics lack empathy or we are manipulative. But by far, the award for “worst label offense” in this battle of inaccuracy goes to the useless and unkind functioning labels that are attached to autistics like they contain our washing instructions. Since functioning labels don’t offer any useful information but instead perpetuates myths, why is it that folks insist on categorizing us using erroneous words like “high functioning” and “low functioning?”
Let’s break down the thinking on this so as to better understand the origin of functioning labels. If we look at this issue from the non-autistic perspective, we can easily see why these misnomers began. Afterall, functioning labels began as a way for non-autistics to describe autistics, not a way for autistics to describe themselves. When non-autistics come in contact with autistics there is a bit of an uncanny valley effect. Meaning, many of us appear close to “normal” to non-autistics, but there is just something a little different about us that makes non-autistics feel “uncomfortable.” If that small discomfort is not accompanied by a visible difference, such as an AAC devise or a support person, the label “high functioning” gets stamped on that autistic’s forehead like an imaginary brand. Likewise, there are many of us who do use a device to communicate, or need a support person, or even may have accompanying physical disabilities. These folks take a little extra work for non-autistics to communicate with, thus raising their level of discomfort, and again, that label of “low functioning” gets branded on. Once branded, autistics get stuck with those scratchy, ugly functioning labels for life and all the bias they bring with them.
Functioning labels from an autistic perspective serve zero purpose and only cause confusion and misunderstanding. Autistics don’t come in a one size fits all package and we are not all the same. We each have our different brand of autism. Though similar enough, none of us is the same. Additionally, as we develop and age as humans, our “functionality” often waxes and wanes. Using any kind of static blanket label leaves us stuck with nowhere to grow and no space to have “bad days.” Functionality simply fluctuates. There are plenty of days that “low functioning” autistics are out in the world interdependently, taking care of their needs and getting their wants met. Likewise, there are a ton of “high functioning” folks who can barely function on some days but cannot get supports, services, or even extra kindness because they are so “normal” and “nobody would know they are autistic.” What happens in both of situations is a mental health nightmare. The “low functioning” folks are having to work so hard to keep non-autistics comfortable that they neglect their own needs and begin to see themselves as a “low functioning” difficult person to be with. This creates low self-esteem and social isolation almost instantly. The “high functioning” autistics have the pleasure of being saddled with the need to be perfect as we are so “close to normal,” and we learn to displace needs for the comfort of non-autistics. This, too, leads to low self-esteem, as nobody can be perfect. Additionally, guilt and shame for “being disabled” on our bad days means we often don’t get the help we need. Yet, functioning labels still persist.
If we really want to describe reality in some way, the best concept to date comes from my friend, colleague, and fellow autistic Dena Gassner. She describes it best as internalized or externalized presentations. Meaning, some of us have external presentations and other people can see our challenges, and some of us have internalized presentations, meaning our challenges are all internal and cannot be seen by others. This concept efficiently and accurately describes the fact and reality of autism, rather than the outsider’s experience of autism. It validates the challenges while not being demeaning or misleading. Simply, I have autism and you can see it, or I have autism and you can’t see it. No comparisons, no judgements, and no assumptions.
The autistic experience is a unique one. There are some days when you go to a new doctor, disclose, and his response that you must be “very high functioning” makes you laugh out loud. I often wish folks who called me that would come take care of me the day after a big event or even the day after the grocery store. What you would find is someone who is “very low functioning” in the place of someone you assumed was oh so “high functioning.” I am often left on those days with minimal ability to speak or care for myself. I can do only the basics, and sometimes not even that. My dyspraxia kicks up making almost all tasks impossible without dropping everything or getting hurt. On those days, I need all the supports, and that scratchy label of “high functioning” feels like a lie, because it is. It’s quite simply time for us to move on from the inaccuracy of functioning labels. Those itchy, scratchy, uncomfortable tags need to be cut off and tossed. People don’t need to come with washing instructions.
Becca Lory Hector, CAS, BCCS, is an autism and neurodiversity consultant/author/speaker/advocate based in Colorado. You can find more of her work, sign up for her newsletter, and follow her social media by heading to her website, www.beccalory.com. You can also email her directly at info@beccalory.com.
The viewpoints expressed in this article do not reflect the opinion of the Autism Spectrum News Editorial Board or the Publisher, Mental Health News Education, Inc.
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Whenever my mum told someone that I am autistic when I was a child, she would get asked whether I was high functioning or low functioning, to which she would always answer, “It depends on what’s happening and what he’s doing.” Even in the late 80s, she understood how minimalist functioning labels are.
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I respect your opinion and your request to not label people who are autistic as high functioning and low functioning. However that leaves me in a bind trying to describe my son who doesn’t speak in words… “Non-verbal” is a bad word, “severe” is a bad word, “low functioning” is a bad word. I am interested to know what language would be acceptable and I am glad to consider using it. Of course, the whole point of language is to transfer information from one person to another so it actually has to capture him and it has to be succinct enough to fit in a little box on a form. This is my son who doesn’t use words, gifts me with about 10 seconds of eye contact daily, can’t tell anyone his name or my name, will only drink from a cup with a straw and likes great big hugs, singing, swinging and jumping. He can’t write the first letter of his name yet you write entire articles; how can I differentiate between you both respectfully and clearly and hopefully short-windedly.
Just looking for any ideas
Thank you