March 10, 2010
Commentary: High-Functioning or Highly Divisive?
By Jeanne Holverstott, M.S.
An initial clinical interview with a parent of a child with an ASD commonly follows this script:
Me: “Can you tell me about your child?”
Parent: “Yes. Well, he’s high-functioning. He…..”
Pause Script.
Question to Reader: Have you heard this before? Said this before? If so, complete the sentence with what you have said or heard.
Resume Script.
Compendium Parent of Responses: “…is potty-trained, is verbal, is highly verbal, has friends, completes hygiene routines, sleeps alone in bed, is mainstreamed, greets others, is smart, is bright, is intelligent, makes eye contact, can articulate feelings, recognizes anxiety, has a paraeducator in the regular classroom, does tae kwon do, plays soccer.”
End Script. Commence confusion.
Clearly, I have heard versions of this script more times than I can count. As such, the word “high-functioning” has lost meaning, if it ever had any for me.
Many years ago, the term “high-functioning” referred to the individuals with autism whose IQ was in the average range. Or, to say it another way, they had autism but were not mentally retarded because their IQ was above 70. During this time, the prognosis for individuals with ASD and with a relatively adequate IQ was presumed to be more positive because other skills (such as those listed above) were intact. Currently, the term is ubiquitous, vague, and over-used by professionals (medical and educational) and parents.
Let’s step back and really think about what we are saying. At its most positive, we are proud of and lauding the skills (either organic or learned) that a child on the spectrum has attained. But, apparently, we are surprised that they have these skills. At its worst, we are exacerbating and prolonging the stigma associated with the word autism by trying to distance ourselves from it. We always say autism is a spectrum, but there appears to be part of the spectrum that we don’t want to associate with.
Ironically, those individuals on the spectrum who are supposedly “high-functioning” (those with AS, those with high IQs) want so desperately for others to understand that they struggle in ways as severe as those who are “low-functioning.”
I am not saying that individuals on the spectrum do not function at different levels. They do. In fact, they function at different levels within themselves. They function at different levels on different days. They function at different levels in different places. There is a spectrum within the spectrum. But, that spectrum is intended to generate unity and identity, not to exclude or include.
NOTE: Jeanne Holverstott is the autism spectrum specialist with Responsive Centers for Psychology and Learning, where she has practiced for three years. She also answers readers’ questions about autism in a Q&A called Ask A Specialist. To send a question, email editor@spectrumconnection.net, and place “question” in the subject line.
I’m not sure HFA is used just as a way of removing ones self from the “stigma” of being autistic. What happens is people respond to early intervention and their needs/abilities change. For example my son is now verbal, doesn’t hurt himself so on.
So when going into a new classroom, social situation, trying to explain needs/resources there needs to be a way to quantify what he needs. His support needs now are less than they were a couple of years ago. Seven years ago we said he is autistic and will need… Now we say he is autistic, but higher functioning and we explain what he can do.
I speak this way with professionals that we work with. Someone like you, I don’t speak this way w/ other people. I speak this way to try and paint an accurate picture of what my son needs, to make sure he gets it, and to make sure that I don’t waste my time.
I’m sorry if you find this confusing, or a waste of your time, maybe just try to assume the best of the people you work with instead of judging them.
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I have to agree with Bonni. I’m autistic. I don’t usually qualify that with “high functioning”, unless I’m talking to a professional who’d want/need to know specifics. For me, it’s just a descriptor, not a divisive term. I know I don’t speak for everyone on the spectrum, but I don’t believe I’m “better” than anyone else – or even all that different.
Bonni and OutOutOut, I truly appreciate your thoughts. My thoughts on this issue were fueled by Michael Carley’s latest book, which I highly recommend.
I attended a lecture last spring by Peter Gerhardt, who serves on many advisory boards related to autism. He voiced many of the same sentiments — that the terms “high-functioning” and “low-functioning” polarize the autism community. (He also discouraged people who have Asperger’s from describing themselves as Aspies.) He opted for language that was more descriptive — “verbal” or “nonverbal,” for instance.
I appreciate the concern, however, it is still a challenge to describe someone in these terms, particularly to lay people who may not be well versed in the ways of autism.
It would be nice to have more descriptive terms, since “high functioning” is relative and can mean just about anything. I agree with Bonni, though, that when you say “autism,” people picture a nonverbal, low IQ child with poor self-care skills, and may feel anxious or hostile about providing for those needs. Parents have to be able to say something. I know a highly intelligent boy with Asperger’s who was open about this while applying to a private high school. School officials were immediately concerned that he would need lots of academic help, extra time on tests, an aide, etc., and his parents had to reassure them that he was “higher-functioning” than they expected him to be. All he needed was awareness and toleration. That may well have made the school more interested in admitting him.
I also have yet to talk to an “aspie” who truly seemed to look down on people who were “lower-functioning” and did not at least want to treat them the way they want to be treated.