By Lance McLemore
These terms have troubled me for a long time. I’ve done a cursory search to try to understand what they mean. I haven’t been able to find precise definitions, but I think I can definitely see a pattern.
It seems to me that a person is considered high or low functioning depending upon how closely they can appear “normal.” Self-appointed experts judge people with disabilities by some standard of normal, which just so happens to describe those experts. I can’t help but notice a little narcissism in that, but I’ll leave that alone for a moment.
The decision to label someone high or low functioning seems quite subjective and to some extent arbitrary. And it’s based on the priorities of the person making that judgment. For example, if someone thinks that holding down a regular job is important, then someone who can do that is more likely to be considered high functioning. Many people think that being able to communicate quickly and clearly is important, so a non-speaking autistic child would probably be considered low functioning.
One big problem with this is that you can’t look at someone in such a unidimensional way. Human beings are far too complex for that. If you want to know how well someone is coping with life, you have to look at all facets of their existence: work, education, finances, relationships, health, etc. It’s been my observation that most people are not able to take such a holistic approach, but if you do take this approach, the view can get very murky. Nobody has a perfectly even distribution of abilities. Everyone is bad at some things and good at others. My speech is terrible, so maybe that means I’m low functioning. However, I also graduated university with honors, so maybe that means I’m high functioning. You could go through my entire life giving me a score on this and that: 1 point for communication, 20 points for education, and so on ad infinitum. It’s a very uneven distribution of abilities, so how do you decide what my functioning level is? Perhaps you can arbitrarily choose a threshold for what constitutes high functioning, add up my numbers, and I’m high functioning if my score is above that number. I just don’t see how all this can be done in a fair non-arbitrary way. It seems quite absurd to me.
Nobody is good at everything, so everyone needs support systems of various kinds. A person’s functioning level seems to be related to the needs they have, how common that need is in the general population, and the availability of support systems to help with that need. At the time that I’m writing this, my car is having a significant and as of yet undetermined mechanical problem. Most people are not able to fix a car when it breaks down. However, it’s not a problem, because there is a large well developed support system; you can just take it to a mechanic. Everyone has to do this from time to time, so it doesn’t cause anyone shame or embarrassment. Nobody judges anyone for needing this help, and if someone does need that help, it is not seized upon as evidence of their incompetence. Things go a very different way if you have an uncommon need. Most people don’t need AAC to communicate, so those of us who do are definitely seen as less capable.
As I mentioned earlier, there is the problem of assigning a functioning label to a multidimensional human being. People are good at some things and bad at others. A person can be considered high functioning in one area and low functioning in another. Do you average out their abilities across all domains of their existence in order to determine their functioning level? How would you do this in an objective unbiased way? I don’t think most people even attempt to do that. It seems like the thought process usually goes something like this: “this person seems to be like me, and I get along in life pretty well, so they must be high functioning.” It might also go something like this: “this person is so strange. They don’t talk, their body moves in such a strange way, they can’t have a job, they don’t have friends, they make me uncomfortable. They seem so different from me. They must be low functioning.” I would like to caution everyone to be aware of the tendency to use yourself as a standard whereby you judge other people. It’s very unlikely that you are the pinnacle of human physical, spiritual, emotional, and intellectual development, so get over yourself and have a little humility.
I have serious doubts about whether functioning labels are even useful in the first place. If someone tells you that someone else is high or low functioning, what have you actually learned about that person? Does that label enhance your understanding of them in any way? Does it tell you what their IQ is? Does it tell you what they do well or poorly? Does it tell you what their future will be like in 5 or 10 years? Does it tell you anything useful at all?
One result of this labeling is that it causes division. A few years ago, I visited an elementary school with a PRC consultant. Some of the staff requested a short LAMP training, because there was a little boy who had just started using it. His mother was there too. I remember at some point she expressed doubt about whether he could learn it, and the consultant used me as an example of what was possible. She said that I wasn’t like her child; I was high functioning or something to that effect. She made an estimation of my abilities and challenges despite knowing almost nothing about me, projected a functioning label onto me, and used it to dismiss me. People with disabilities get divided like this, and it’s not helpful to anyone.
Many years ago, I read something from an autistic self-advocate, and I’ve never forgotten it: when you’re high functioning, your deficits are ignored; when you’re low functioning, your assets are ignored; either way you get ignored. Many people might think that being considered high functioning would be better, but it’s not. I know several such people. They struggle for years to cope, but they get no help because their challenges are not so visible. It’s only when they have a psychological or other crisis that people start to consider that they might need help. Someone who is supposedly low functioning is more likely to get help, but they are still seen as strange, unintelligent, incompetent, etc. Each group has to deal with their own special kind of hell.
Ultimately, I think people use functioning labels out of laziness. It’s faster and easier to put a label on someone and delude yourself into thinking you know them. It takes a lot more time, energy, and courage to approach someone with no preconceptions and see them as an individual. Ask yourself: is this tendency to categorize human beings fair, is it helping or hurting the person being categorized, and is it helping you to understand them?
Communicators In Action - asd, autism, function, expectations, cognition,