Significant Impairment
Imagine the following scenario:
Student A has the typical motor features of mild cerebral palsy. He walks, but does so awkwardly, and can't climb stairs. At School A, this means he must be carried up the stairs in order to attend his second-floor classes. As a result, he is diagnosed with cerebral palsy.
After awhile, Student A is transferred to School B. His motor skills have not significantly changed, but in School B he can use the elevator to get to his second-floor classes, and he does not have trouble getting around independently. As a result, in School B, he is not considered to have cerebral palsy anymore.
Sounds ridiculous, doesn't it? Obviously, cerebral palsy can't be cured simply by removing environmental barriers. Student A may function better in School B, but he still has cerebral palsy.
But apparently the same is not true of autism. Baron-Cohen et al tested a number of people on a new self-report measure of high-functioning autism, including diagnosed autistics, members of the general public, and university students. He found that a cutoff score of 32 points best distinguished autistic from non-autistic subjects. However, some controls scored above that cutoff. While he couldn't interview the members of the general public (because they were anonymous), he did interview 11 university students with scores above 32. Seven of them met criteria for AS/HFA, but:
"No diagnoses were actually made for two reasons: No parent was present to provide independent developmental data, and because none of those meeting criteria complained of any current unhappiness. Indeed, many of them reported that within a University setting their desire not to be sociable, together with their desire to pursue their narrow or repetitive interests (typically mathematics and computing) was not considered odd, and was even valued. ... In all 11 cases however, there was evidence from self-report of significant impairment in functioning during the school years (social isolation, being bullied, and difficulty in making friendships)."
(I could also complain about requiring parents to give data, as this makes adult diagnosis really difficult sometimes, but that's another issue.) So, basically, they were not impaired enough to be diagnosed, but they had been in childhood*. Note, importantly, that this wasn't because they'd gotten any less weird - they'd just found a setting where weirdness was tolerated.
Is it just me, or is the requirement of 'significant impairment', a criteria for all or almost all conditions in the DSM-IV, really screwy? Hey, we found the cure for autism! Stick them in an environment where being autistic doesn't cause them any problems!
* The four who didn't meet criteria could have been diagnosed with PDD NOS.
Student A has the typical motor features of mild cerebral palsy. He walks, but does so awkwardly, and can't climb stairs. At School A, this means he must be carried up the stairs in order to attend his second-floor classes. As a result, he is diagnosed with cerebral palsy.
After awhile, Student A is transferred to School B. His motor skills have not significantly changed, but in School B he can use the elevator to get to his second-floor classes, and he does not have trouble getting around independently. As a result, in School B, he is not considered to have cerebral palsy anymore.
Sounds ridiculous, doesn't it? Obviously, cerebral palsy can't be cured simply by removing environmental barriers. Student A may function better in School B, but he still has cerebral palsy.
But apparently the same is not true of autism. Baron-Cohen et al tested a number of people on a new self-report measure of high-functioning autism, including diagnosed autistics, members of the general public, and university students. He found that a cutoff score of 32 points best distinguished autistic from non-autistic subjects. However, some controls scored above that cutoff. While he couldn't interview the members of the general public (because they were anonymous), he did interview 11 university students with scores above 32. Seven of them met criteria for AS/HFA, but:
"No diagnoses were actually made for two reasons: No parent was present to provide independent developmental data, and because none of those meeting criteria complained of any current unhappiness. Indeed, many of them reported that within a University setting their desire not to be sociable, together with their desire to pursue their narrow or repetitive interests (typically mathematics and computing) was not considered odd, and was even valued. ... In all 11 cases however, there was evidence from self-report of significant impairment in functioning during the school years (social isolation, being bullied, and difficulty in making friendships)."
(I could also complain about requiring parents to give data, as this makes adult diagnosis really difficult sometimes, but that's another issue.) So, basically, they were not impaired enough to be diagnosed, but they had been in childhood*. Note, importantly, that this wasn't because they'd gotten any less weird - they'd just found a setting where weirdness was tolerated.
Is it just me, or is the requirement of 'significant impairment', a criteria for all or almost all conditions in the DSM-IV, really screwy? Hey, we found the cure for autism! Stick them in an environment where being autistic doesn't cause them any problems!
* The four who didn't meet criteria could have been diagnosed with PDD NOS.
posted by Ettina at 9:46 AM
11 Comments:
If you aren’t impaired, what’s the problem — what is the purpose of a diagnosis?
If something exists on a spectrum, then “impairment” is what decides when it’s a disorder and when it’s just the way someone is.
The vocabulary developed to talk about a disorder can be interesting or useful to talk about people on the spectrum who aren’t impaired, but there’s no reason to diagnose them with a disability if they don’t have a problem.
In School B, the student you described probably *would* continue to be considered to have CP because they would not be participating in the same gym class as everyone else.
A student who had a *very* mild case of CP such that they were clumsy but could still participate in the full school curriculum would not be considered to have CP, but would be considered clumsy.
While I can see your point --- that it's ridiculous for external factors to have such influence over whether a given person meets a given diagnosis --- I'd rather the "significant impairment" qualifier stay put.
I think that qualifier encourages the diagnosing psych professional to think in terms of the patient's life, and what he or she needs, wants and feels. I think it introduces a needed subjectivity that (somewhat) helps combat the overwhelming tendency in psych to pathologize perfectly benign differences.
Asking, "So does (blank) really impact this person's life? Is it upsetting them?" seems to me the best way for psych (and medicine in general) to get off the track you described earlier in your post on "The Holy Norm".
I don't like the idea of requiring parental input for diagnosis, either. Many parents would probably lie to make their offspring appear normal.
fledchen, that's what my parents did, but unintentionally, they can't look in my head, and see how I see the world, so they can't judge.
Alison, it's about an identity, what happens when these students want to change their environment? Then they're disabled again?
Differences stay, and you can't "diagnose" the environment.
Also ASD is not only about "impairments" as strengnths are also a part of it.
It's like saying someone isn't gay unless they're being adversely affected by homophobia.
Off topic for this post, but I thought this article on asexuality would be of interest:
http://www.independent.co.uk/life-style/health-and-wellbeing/features/no-sex-please-an-asexual-life-1646347.html
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I'd like to see the autism spectrum disorder move away from being pathologized and seen as a disorder to a neurological difference. I say this as the mother of three children on the spectrum, one of whom is severely autistic and from my perspective as someone with a master's in psychology with an emphasis on autism.
I don't know yet how we do that, but just because someone has found a way or a place to fit or be accepted doesn't make them not have autism or Asperger's. It's frustrating, but maybe that's because of my particular perspective.
I'm a university student with AS. I've also been studying some of Baron-Cohen's work this year. I agree with you that environment does not make a disability cease to exist, but an individual with ASD may function better in one environment than another. A significant number high-functioning individuals with Autism or Asperger syndrome have the potential to do well in careers that are knowledge based and capitalize on the special interests and strengths. One such example of this is acadmeia. I preform well academically and hope to be a researcher in psychology, but I still have significant impairments in many non-academic situations (e.g. a tendency to get overstimulated in public places, difficulty judging flow of traffic when crossing intersections, facial recognition, social interaction in groups). I think the key (as with your hypothetical student) is to find situations in which you can function well in.
"I think the key (as with your hypothetical student) is to find situations in which you can function well in."
I agree completely. I find university to be a haven for many high functioning autistics. I'd like to see more elementary/high schools run like universities - allow them to focus their studies on areas of interest, get them taught by people who actually care about the topic they're teaching (part of the travesty of math education is because most teachers hate math), and give more freedom for kids to do things like eat in class or wear hats (seriously, *why* restrict hats?) or sit in a weird position - as long as they're not disrupting others (and be realistic about what actually is disruptive - merely being weird in public is not disruotive).
Oh, and thanks, Andrea. Though it bugs me that they don't allow comments. I was going to comment that I'm an asexual who *doesn't* masturbate - the desire to masturbate is just as foreign to me as the desire to have sex. I actually don't physically react to the things that most women do to masturbate. The closest I've come is having weird twitching, which was not at all pleasant for me.
I think in my case it's related to autism, given how many autistics (especially autistic women) identify as asexual. But I have no clue what underlying mechanism causes it. I went through the usual physical changes of puberty, but I had no puberty-related increase in mood swings or urge for independence either.
I also wonder how many people are asexual and don't realize it. When I was younger, I mistook non-sexual feelings for sexual bgecause I was so conditioned into thinking I *would* develop a sexuality. It was only once I read that asexuality is possible, and read some stuff about what sexuality actually feels like, that I realized my 'crushes' hadn't been real crushes.
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