Why Labeling Autistic Kids Like My Son 'High-Functioning' Is Harmful
My son and I had only been in the grocery store for a few seconds when he started laughing. It escalated into a clamor that was half laughing and half shrieking. I hurried to grab the few items from my short list.
My son is autistic, and if he is overstimulated or anxious, he might repeat a phrase or sound. On this particular afternoon, it was laughter. I didn’t know he would react that way on that day. If I had, I would’ve saved the shopping for later. But there was no way to know. You see, my son is considered “high-functioning.”
At the register, I picked my 9-year-old son up and held him in my arms, even though he is almost too large for it. I patted his back and swayed from side to side as if I were soothing a fussy baby. His shrieking laughter pierced my ears, but I was calm as I silently willed the cashier to scan my few groceries quickly.
My son could clearly be heard by everyone in the front of the store. I was aware of the looks we were attracting. I am used to the disapproving, judgmental side-eye from strangers who mistake meltdowns for tantrums. This time was different. My son’s agitated laughter combined with the fact that I was holding him in my arms, even though he was too old to be held, made it obvious to all but the most clueless that he was autistic.
An older lady approached, identified herself as a nurse, and kindly asked if she could help me. I was grateful for her kindness. As we walked out, the employee standing at the customer service desk said she had just put out fresh cookie samples if my son would like one. I was thankful for her kindness, too. My son took a cookie, and we went outside where he immediately calmed down.
You can imagine my frustration the following day when I realized I forgot an item from the store. I put the errand off until the next day. Then I put it off one more day. I thought if I took my son to the store immediately the next day, employees might recognize us. I wasn’t avoiding the store because I was afraid my son would melt down again. Rather, I suspected he wouldn’t.
My son is considered “high-functioning.” Nine out of ten trips to the grocery store, my son can read a simple grocery list and lead the way to the milk, eggs, bananas, and so on. He’ll scan the shelves to choose his favorite granola bars, and he’ll sneak bags of marshmallows into the wagon when he thinks I’m not looking. He can sometimes help carry items to the register if I foolishly didn’t think I needed a basket beforehand. My son will squeeze mangos for ripeness, gripe when I suggest fresh, roasted Brussels sprouts for dinner, and help himself to the plastic domes full of cantaloupe chunks.
I don’t give a flying fig what strangers think when my son is having an emotional dysregulation and sensory meltdown. If you have the nerve to utter something about my son being spoiled and having a tantrum, I won’t hesitate to point out your ignorance. But this felt different. I cared because I worried that people would think my son wasn’t disabled after all. Was he faking the other day? Was he just a big, spoiled kid having an unusual tantrum? After all, this boy, who was helping his mother pick out apples, did know how to behave in a store.
This is a problem voiced by many people with less visible disabilities. Someone with a disability is having a day when she feels better than usual, and she takes advantage of the opportunity to go out and live her life. Judgmental observers use her “good” day to question the severity or even the existence of her disability.
It’s true my son could function well or “behave” in the store on Thursday. But he truly couldn’t on the previous Monday. Herein lies one problem with the language of “high-functioning” versus “low-functioning.” By labeling autistic individuals “high functioning,” you are diminishing how challenging it may be for them to appear high-functioning. You are ignoring how difficult it may be for them to focus on what they need to do while regulating their sensory input plus the hundred micro-social interactions that occur during a 30-minute trip to the grocery store. “High-functioning” often has less to do with how they encounter the world and the level of effort they must expend in order to navigate the world and more to do with how little their disability inconveniences you.
When you call my son high-functioning, you ignore how hard he works and how much support he may need on any given day. You highlight his strengths — the kind of strengths that are valued in society — like reading and speaking, yet you ignore his very real challenges. While you may observe him reading and speaking, it is not always easy for him to do so. If my son is having a problem, he might not be able to read the writing or verbalize the words. He might clam up, withdraw, or melt down. But, because he is “high-functioning,” you will expect him to function in a certain way and not understand those times when he cannot.
Likewise, when you call a child “low-functioning,” you ignore their strengths — strengths that maybe aren’t conventionally valued in society — and focus instead on their challenges, shortchanging them and your expectations of their contributions. My son has a whimsical imagination and a delightful sense of humor. He offers kindness and acceptance with his freely given hugs. He contributes all of this outside of his “functional” skills.
People deserve better language than “low-functioning” and “high-functioning.” A good place to start is by understanding that everyone has good days and hard days that affect how well we do in any circumstance. A next step is realizing that perhaps Joe or Jane is functioning perfectly well for Joe or Jane. Finally, let’s rethink how we assign worth to various abilities so the strengths and dignity of all people are valued.
Getty photo by Image Source.