You’ve heard that autism is a spectrum disorder. And by that, you probably pictured it in the way a spectrum of light is often displayed, much like that image to the right. It’s linear, with levels of severity that range from one end (high-functioning) to the other (low-functioning), and it has infinite points in between that all qualify as an autism diagnosis. The objective in this metaphor is to convey that there is a vast array of symptoms that the autism spectrum can exhibit, but they all exist somewhere along a defined trajectory leading from better to worse.
This kind of thinking is incorrect, and I’d like to stop using it.
The autism spectrum is not a bar or a line; it’s circular, like that image to the left. It still shows infinite variety, but there is no higher or lower point, no suggestion of less or more, no beginning or ending.
Why does this matter? Because there isn’t really any high- or low-functioning autism (you can read more about that here.) I believe that using the terms high- or low-functioning is damaging to the community because it conveys assumptions about abilities and inabilities.
Simply stated: “high functioning” disregards the very real challenges an autistic person faces daily. “Low functioning” diminishes the value of that person’s skills and sets low expectations for their achievement.
I’ve noticed that some parents are quick to say their child is high functioning. It sounds to me as if they are saying that while their child may be autistic, it’s only “high-functioning” and therefore not like other cases. I infer that they are downplaying the autism. On the other hand, I have personally heard very few parents describe their kids as low functioning. My theory is that while there are definitely more significant presentations of autism than others, these latter parents realize the pejorative nature of the term “low.” And if there shouldn’t be a low, there can’t be a high.
Conversely, I have heard many parents comfortably discuss the more difficult aspects of their child’s autism, but not one calls “mild.” There is nothing about autism that feels mild, no matter where your child is on the spectrum. That disparity alone should demonstrate why we need to stop using the terms high and low. The difference lies in the use of words that can be viewed as flattering (high) vs. disparaging (low). Our goal is to describe our child, not place him or her on a scale of valuation.
To those that will say the terms high- and low-functioning do help the world to understand a specific case of autism better, I simply have to disagree. Additionally descriptive terminology is helpful only when it adds necessary or clarifying information to the discussion. For example, if I tell a waiter I want to order a steak, it’s both helpful and clarifying for me to offer that I want it cooked medium. That information carries with it a defined and common understanding. But saying high- or low-functioning doesn’t have a diagnostic criteria and therefore carries a different interpretation to anyone who uses it. It’s the equivalent of me telling that waiter I want the steak the way they make it in September. What does that mean? Exactly.
I understand that it’s hard to describe the nuances and complexities of autism, and so we prefer shortcut terms in casual conversation. But taking those shortcuts detract us from the objective of helping people outside the autism community to better understand those of us within it.
The unique neurology of an autistic person can’t be reduced to a two-word label. Certainly the intent behind using the term “spectrum” is specifically for that reason. It’s all autism. Let’s work on helping the world accurately understand what that means, rather than drawing lines in between it and taking up residence on our own side.