I have followed, with interest, conversations among fellow bloggers about the use of the terms "high functioning" and "low functioning" as descriptors of autism. They're not categories that I tend to use, because I think they're arbitrary, artificial constructs that are too situation-dependent to be of any real value: How high is "high"? How low is "low"? And how are we defining "functioning," anyway?
Even if we look at particular skill sets in isolation, it's difficult to clearly define what constitutes "high" and "low" functioning. Take language, for example. On the surface, we would assess a child who is able to use language conversationally as "high functioning" and one who is not as "low functioning," with a broad spectrum of ability between the two. Right?
I'm not so sure.
I began to consider this issue when I read Cammie McGovern's Eye Contact, a mystery novel set primarily in a school. Several characters in the novel are either identified as autistic or described in a manner that implies that they are on the spectrum. One boy, identified as autistic, uses very little language. His limitations in that area are fully recognized by other characters and he has staff who work closely with him as he successfully manages each school day. A second boy is articulate and verbose and, though he's not specifically identified as such, he appears to have Aspergers. Because he is smart and verbal, he is frequently left alone to navigate complicated and confusing social environments at school. As a result, he is bullied and assaulted by classmates.
I wonder: which boy has "higher functioning" at school?
I look around my real-life work environment and consider two young men, Christopher and David, who are in the incoming class of college students. I don't have any specific information about their neurology, and my conclusions about them are based only on observation and speculation. However, what I see tells me that Christopher may have some sort of language processing disorder. His writing is clear and precise, but conversations with him are slow. When asked a question, Christopher pauses, his eyes scanning the ceiling as if he's searching for a cue card stashed there. His pauses last an unusually long time, and are typically followed by a brief answer - sometimes as brief as "yes" or "no."
After a single conversation with Christopher, other people on campus can (and do) clearly recognize his challenge and make reasonable accommodation for him by slowing their rate of speech, giving him more time to process his response, and, when possible, providing him opportunities to converse through writing instead of speech.
David, by contrast, is quick with verbal comebacks and retorts. His answers are so articulate, in fact, that it's easy to get the impression that their acerbic bite is intentionally designed to insult the recipient. David talks at length about his areas of interest - his esoteric collections of things foreign to most college-aged people. He seems indignant and self-righteous when he insists that his peers must know what these things are, and that only an imbecile would lack such knowledge.
David enjoys playing his music (Peter, Paul, and Mary; Arlo Guthrie - not the standard Dave Matthews college student fare) frequently and loudly, much to the chagrin of his neighbors, who have complained to their Resident Director. When the RD asked David about it, he responded that things were going well on the floor. He knew this, he said, because every time someone had a problem with his music, they told him and he turned the music down. He reported that he got this request three or four times a day, and each time he happily obliged.
David was unable to generalize from the specific in this situation - to draw the conclusion that if his neighbors were asking him to reduce his volume four times a day, they would prefer that he keep his volume lower all the time. He was also unable to read the nonverbal cues from his neighbors, which most certainly indicated their decreasing patience with his continuing noise.
Again, I wonder: As Christopher and David progress through their first semester at college, who will be more successful in the world of college housing - slow-talking, less verbal, "lower functioning" Christopher, or fast-talking, more verbal, "higher functioning" David?
I thought about it a third time with an example much closer to home. Bud is verbal, but he continues to struggle with sustained conversation and he often relies on mitigated echolalia and scripts to make his points. Our blog-friend Owen, on the other hand, is very verbal and would be considered "higher" than Bud on the scale of verbal functioning.
Both Owen's mom, Tara, and I were nervous about our sons' transitions to school this year. Bud made the transition well, with extraordinary support from his teacher, classroom aide, and special education staff. Owen, on the other hand, was forced to withdraw from school after experiencing not just a lack of support, but also actions that made his transition more difficult - and, ultimately, impossible.
Clearly, one primary difference is that Bud is in a student-centered, collaborative school system and Owen was not. Beyond that, though, I wonder to what extent the staff of Owen's school underestimated the level of support he would need because they focused too much on the strength of his language and failed to recognize the challenges of his autism. By dismissing him as "too high functioning" to require significant accommodation, they created a dysfunctional - and now, a non-functional - learning environment for Owen.
It's examples like these that make me reject the "high-functioning" and "low-functioning" descriptors and regard them as inadequate, ineffective, and inappropriate. And, I have to say, if these are the classifications that will drive the services my son receives, that will shape the responses he gets from other people - if the degree of accommodation, understanding, collaboration and compassion that people will be willing to proffer will be based solely on their assessment of his "functioning level" - then I can sum up my philosophy in two words: