What’s the difference between high and low functioning autism? Let me start by saying I do not like those terms, “high and low functioning autism,” and using them could actually be very damaging to individuals with autism. Back in
the day, I, along with everybody else, used to use the terms high and low functioning autism. People often think of the autism spectrum as a straight line from “low functioning” individuals on one end and “high functioning” individuals on the other. But, ironically, no one ever claimed to be middle functioning, right? After all, what makes a child “low functioning?” Is it based on the numb
er of words they use? For example, is your child low functioning because he only knows 12 words? If he knows 13 words, would he now be high functioning? In reality, most of us are on a bell curve in the middle.
Today we realize that the autism spectrum is not linear. It’s not like there is a specific profile for each end of the spectrum. For example, we wouldn’t say that low functioning individuals are non-speaking and self-injurious and high functioning individuals are The Good Doctor on TV. A better way to think of the spectrum is to consider the amount of support each person needs. Individuals on the one end of the spectrum require very substantial support. Those in the middle require substantial support and those on the other end, require some support. So, when we describe individuals with autism, we’re not saying high, low, and, of course, we never say middle. We want to describe what supports they need, who they are, and what their gifts and challenges are.
When a person is characterized as “low functioning” we tend not to expect very much of them. When expectations are low, the bar for learning is also often set too low. The thinking is “That’s his level of functioning and well, yeah, we’re doing what we have to do because they’re so low functioning.” Here’s the problem with that – every person in the field, every parent, every teacher, everybody who knows someone with autism, knows individuals who require very substantial support that can do amazing things. Neuro-typical people tend to operate at one stable level, but individuals with autism often have splinter skills. These are abilities that require prerequisite learning of other related skills. Often, people with autism have these higher-level abilities without being able to demonstrate the prerequisite skills or have no history of every learning them. For example, some people with autism may able to do high level math calculations but are not able to handle simple money exchanges at the grocery store.
I found a different way to look at the autism spectrum from an organization called GAO Analysis and I just think it’s beautiful. Picture a color wheel and think of each color as a different skillset or a different characteristic of someone with autism. The wheel includes categories like intense focus, sensory sensitivity, communication challenges, behavioral issues, and more. When we apply this to the person with autism, the more the individual is affected by each characteristic or challenge, the wider and deeper the color is. This helps you to see that regardless of how much or little support the person requires, we can see their challenges. So, someone who would be thought of as “high functioning,” actually may have substantial challenges in areas we wouldn’t imagine.
In addition to where someone falls on the spectrum on the color wheel, we have to keep in mind that this is also very fluid within the individual. For example, I know a young lady with a very high IQ, who has a job and life skills, yet when she gets scared or stressed, she literally can’t speak. She shuts down. That is how her autism affects her. So, we have to stop thinking “high” and “low” and look at the individual, the supports they need, and to realize that just because they’re non-speaking, doesn’t mean they don’t understand communication and language necessarily. Further, just because someone can speak and is mainstreamed in school doesn’t mean that they don’t struggle immensely with other issues. To put it simply – If I say someone’s “low functioning” I totally ignore all of their gifts and their abilities and I set the bar way too low. Doing this limits what the person learns and hinders their capacity rather than maximizing it. Now think about this. If I say someone’s “high functioning,” I ignore all of their challenges entirely. So, if a person is fully conversation, if they hold a job, if they are a published author even, the assumption is they don’t have any difficulties or needs for support. That’s ridiculous.
Words are important and even very well-meaning people will continue to say “high and low functioning,” but as a community, we need to start looking at the individual, and use language to focus on the impact of their autism and the amount of support they need. At the same time, we have to remember that not all gifts and challenges are immediately visible. Individuals on the autism spectrum vary greatly from one to another. When diagnosing autism, professionals use the following terms: Level 1 needing some support, Level 2 needing substantial support, and Level 3 needing very substantial support. Describing individuals in this way will help them get what they need to be able to live their best lives. What more could anyone ask?