The Speed of Dark

When our son was little, he was considered “low-functioning” because he was nonverbal and tested severely delayed on just about all developmental measures.

A friend’s son was considered “high-functioning” because he was highly verbal and had a high IQ.

The story of how verbal ability became a marker for “high-functioning” in autism is grist for another post, but the implications, for both verbal (Asperger’s) and nonverbal (classic autism) varieties of spectrum disorders is today’s topic. There’s a long history in our educational system of assuming that IQ measures “global” intelligence and thus determines what can be expected of a given child in every aspect of their lives (other than, maybe, sport.) The kid with a high IQ is expected to make A in everything; the kid with a low IQ is expected to struggle in everything.

Most of us know this is not true…and in fact, in my day, it was assumed that IQ was global except that girls were better at reading and boys were better at math (at the same IQ)–another false assumption, but one that led to my being scolded for being so good at math (it was, I was told, embarrassing to the boys to have a girl make high math scores–I should flunk some tests on purpose to prop up their egos.) But individual variations–the kid who is great at math, great at reading, but lousy at history (to take an instance of a kid I knew) were always assumed to be the fault of “laziness” or “lack of motivation” or “not working hard enough.”

Two points are particularly relevant in considering IQ and verbal ability as measures of functional level in autism-spectrum disorders. First, the primary and lifelong deficit in these disorders is in social functioning–the ability of the individual to “fit in” or “get along” in society–to make friends, to get and hold a job, to form long-term relationships, to regulate his/her own emotional state in relation to social demands. Intelligence alone, verbal ability alone or combined with intelligence, does not prevent this deficit, nor cure it–or there would be no Asperger’s Syndrome. And second, the typical developmental pattern of those on the autism spectrum is unevenness–extreme unevenness. Where the average person range perhaps a letter grade up or down in a given subject, it’s more typical for someone on the autism spectrum to range from A++ in one area and F- – in another….in other words, the range of performance is extreme. It’s extreme not because the person “isn’t really trying” or “isn’t motivated” but because (for instance) a legless violinist can play the violin brilliantly but won’t be able to run a hundred yard dash. Parts of the system just aren’t there, or are there in very reduced form.

Yet by labeling someone “high” or “low” functioning, the person who sets the labels is creating expectations that are unfair—to both.

Verbal ability does not equate to social functioning–it affects its development, certainly, but does not determine the level the individual can finally reach. Nor does IQ. Both verbal ability and IQ can make it somewhat easier for an individual to overcome a social-functioning deficit of a certain size–but because society expects more from someone who can talk and who tests smart, the expectation may still be too high. When a child is constantly failing to achieve what’s expected–at any level of expectation–and feels defined as a failure–that cannot help but impact the child’s personality, over and above all other innate problems.

At the other extreme, the individual who cannot talk, and whose IQ tests scores are below normal, can be trapped in the low expectations of those who think speech and IQ are the whole person. If that person’s social-functioning deficit is less, he or she may be able to advance in the social realm in spite of lower global intelligence–and make do with minimal verbal skills (or alternative means of communication) later on. With adequate support early on, this person may exceed expectations (and, in doing so, find more social acceptance than the person who–smarter and more verbal all along–still could not reach the level his/her therapists/teachers/employers thought he/she “should.”) But the person labeled “low-functioning” is likely to receive less support, and his/her progress is less likely to be recognized for years.

Most of us recognize this when dealing with people who carry no labels. We’ve all run into the highly verbal person who is just plain nasty–who uses verbal ability to bully and manipulate others for their own gain. We’ve all run into people who impress us as very smart in one area but gullible to stupid in other areas. These people aren’t all on the spectrum somewhere–they’re just another example that verbal ability and IQ do not give the whole picture of functional level.

Function levels are meaningful only in specified areas: how functional–how good–is someone at reading, holding a conversation, keeping their checkbook straight, “networking,” holding down a job (and which job?) I am “high-functioning” as a writer, but “low-functioning” as a housekeeper–“high-functioning” in certain aspects of land management, and “low-functioning” at building fence (where my husband is high- functioning.)

Global labels of “high-functioning” and “low-functioning” applied to persons on the autism spectrum–and especially perhaps the concentration on verbal ability and IQ as the metrics for those labels–do a disservice to the individuals so labeled. It’s especially a problem with children, since autistic children do continue to make developmental progress as long as they get the right supports….but their access to those supports is, at present, related to the global label. The highly verbal, high-IQ Asperger’s kid is no less disabled–no less unable to progress without special interventions–than the nonverbal classic autistic kid.

In my opinion, such global labels should be replaced by specific functional markers for each cognitive and social domain–understanding that we’re looking at rates of progression, not fixed labels. I did this for our son, on my own, because I was so dissatisfied with the standard global scores that did not reflect the reality we lived with. It was a great help to me, as the primary therapist and teacher, in creating a scaffold for his development, opening doors and celebrating his walking through, rather than creating barriers (since he was originally defined as “low-functioning”) or making it clear to him that he was never good enough, that he was always failing.