Monday, March 02, 2009

Clumsy definitions of disability

It occurred to me whilst shaving with one of those multi blade disposable razors whether that was ethical at all, given how few shaves one gets out of them, and the amount of steel and plastic they must use up. Granted they use less steel than the contraptions my father used, but still was there an acceptable alternative. (my annoyance was in part, how easily these razors become clogged with bristles as well if one has skipped shaving the day before)

The alternative is of course the aptly named 'cut throat' razor and I cannot imagine how our forefathers managed to 'hack it' with such a dangerous appliance. Now as you might have guessed, I am clumsy, there is no way I could use one of those things safely.

Following my train of thought, I considered. What if steel and plastic were so scarce that the government banned disposable razors (as indeed incandescent light bulbs are being increasingly banned) Someone like myself would probably need a medical exemption to continue using one, and these devices would become rarer, more expensive and available at the chemists by prescription only.

I could then see and epidemic of dyspraxia diagnoses, as every post pubescent boy struggling with a cut throat razor, was taken by his parents for the magic “label” that would allow him to be spared the rigours of continual sticking plaster around his gills.

Safety razors would become as hot a property as an illicit shot of Ritalin.

Now that is not to say that my clumsiness is not of an order that is well below the usual two standard deviations from the norm, that tends to be a rule of thumb dividing line between a disorder and natural variance. Someone always has to come at the far end of any bell curve else it would not be a 'natural distribution' if it had vertical sides.

However we can also look at natural variance in eyesight. One can well argue that ones visual acuity is as much a medical issue, as ones physical co-ordination, indeed sometimes the two are linked. However one does not need the services of a Dr or a formal diagnosis for one, in order to go to an optometrist to get the accommodations one needs. True there are fewer options available once one exceeds a particular dioptre strength (as I found when trying to get prescription swimming goggles, they mostly cater for a range of about one standard deviation from the norm) but nonetheless one does not usually go to the hospital to be fitted with high strength lenses. Glasses are considered a social norm, a fashion item even, and nobody thinks about an underlying epidemic in the increasing numbers of people who wear them, or contact lenses. No instead one looks to changing social patterns as an explanation given the higher literacy rates, and greater demands upon vision that a technological society makes.

Where is all this leading. Well Neuro diversity is something that encompasses “dyspraxia” as well as autism and adhd. It also encompasses dyslexia, that other emergent product of the demand for higher literacy.

Now I was not diagnosed as dyspraxic or dyslexic by a GP or a hospital consultant anymore than I was prescribed glasses by one, I was diagnosed by a dyslexic specialist, outside of the health service.

When it comes to anything on the autistic spectrum, be that PDDNos, Aspergers or Autistic “Disorder” (to use the DSM categories) one requires to go through the medical route, but why?

Psychiatrists are often ill experienced and ill trained to diagnose anything other than a particular set of mood disorders, psychoses and personality 'disorders' and in the strong evidence of something secondary presenting more strongly than the autism they won’t see it.

On the other hand paediatricians are seeing more autism, but again why?

Is it because Autism confers a perceived social advantage in a highly competitive educational arena that parents and paediatricians are getting hip to the autism jive? More so than the psychiatrists amongst whom there is not this pressure to learn about autism as they do not expect to see it much amongst there adult patients?
Is this an example of the rule that can be derived from my razor example?

To put it simply, autism does exist, as a set of neurological differences, as real as those that underlie dyslexia and dyspraxia (which are equally complex conditions when one unravels them) however it exists as a natural distribution and the way it is diagnosed and the numbers are socially defined and shifting over time. Autism has it’s own bell curve and the pressure is now there diagnose those two standard deviations on the far side of the bell curve as well as those on its 'severe'end whilst the majority falls within the middle.

I can hear those parents whose children fall at one end of the bell curve protesting, the epidemic as if all the diagnoses are coming from that end. Well they are not, it is a bell curve and not skewed at the bottom, that diagnostic prevalence toward a low IQ construction of autism is falling away because of those social diagnostic shifts.

I asked a rhetorical question in an earlier blog as to whether I am autistic. Well it seems most people in the know would comfortably diagnose me in there. However that does not make me necessarily less autistic than these straw men arguments put up to justify continuing denial of rights to so called lower functioning autistics. It does mean that so far as my IQ goes I am on the far side of the bell curve (OK I admit it) but that is yet another bell curve, a natural distribution that will cut across practically any 'disability' you care to mention, and the consequences are always going to be more difficult if you have less intellectual capacity to spare, to problem solve for yourself, be that if you have arthritis, or are Deaf. Deafness is the great example again, at one time Deaf people were considered automatically “retarded” because of the importance that psychology put upon language for the formation of concepts and ideas, in those dark days.

Who would deny that an intelligent Deaf person had the right to speak as an advocate for the rights of Deaf People, across the now notorious bell curve? Well you might if you were a hearing parent of a Deaf child, full of the standard societal notions of how important oralism is, and what an imposture sign language is. You see there is nothing unique about Autism so far as it fits within the social constructions and appreciations of Disability at all.

Please note that comments are only open for sensible debate. Fanatics who have no intention of ever changing there position on this, people who denigrate each other in the argument by calling there opponents had better keep fighting your Troll wars somewhere else as I don’t want to insult the readership of this blog by exposing them to the scatological level to which debate has descended elsewhere. So keep it polite please.

14 comments:

Catana said...

Isn't lack of understanding of "natural distribution" one of the primary reasons why it's so easy to stereotype? It's only in the last decade or two that there has been acknowledgement of the simple fact that gifted children can have learning disabilities. I now see the autism spectrum in the same light--autistic individuals "can't" be gifted, or even normally intelligent. This is an area that will eventually give way to reality, but there will be a lot of head-against-wall frustration before it changes.

Socrates said...

"Is it because Autism confers a perceived social advantage in a highly competitive educational arena that parents and paediatricians are getting hip to the autism jive?"

I postulate that Oliver and Charlotte are going to benefit enormously from the many accommodations that will be available to the children of the assertive and educated middle classes.

Whereas yer lawless brat from a council flat, will probably have to be content with ADD, Borstal and the implicit criticism of Dwayne and 'Shell's parenting.

Is high functioning autism trendy among the middle classes?

It certainly is in Cambridge, but the parents are all half-way there; And around here, a ten year old translating the Satyricon is about as getting an ASBO is in Acton.

That's why His Imperial Majesty requires you to be screaming heebeegeebees before writing out a ticket.

laurentius rex said...

Translating the Satyricon is one thing, but filling in Petronius' blanks by adding your own scurrilous text may well earn you an ASBO even in Cambridge :)

Oh dear I have lowered the tone of the debate already.

tinted said...

What measure of autism do you use to place autistics in order on a bell curve?

Fleecy said...

I'm afraid I don't have "sensible debate" to offer. I don't really have debate to offer. I just want to say I thought this post presents an interesting point, that the more demand there is to do an activity, the more people are going to notice how many people, well, aren't so good at that activity (makes good sense to me). Can I do that? :)

tinted said...

Have I been banned? The last couple of times I've tried to comment, my posts haven't been shown. I can't think what was offensive about them.

laurentius rex said...

Your name is not Harold Doherty or John Best is it?

This is the first post I have seen from you, maybe a problem posting to blogger, I have that sometimes.

laurentius rex said...

Tinted I think there is a problem with blogger, I have just let the second of your posts through but I can't see it yet.

In reply, to describe autism on a bell curve is of course an over simplification given that autism is a multiaxial phenomenon, but I guess most people would have difficulty creating mental images of n dimensional space so I leave it at that.

Club 166 said...

I believe that the growth in the number of cases of autism is related to a couple phenomena:

1) Expansion of diagnostic categories,

2) Having a formal diagnosis as a necessary step to obtaining any services. When there weren't any (or very few) services available, it didn't make any difference whether you had a diagnosis or not.

I don't think it's because it's fashionable. It's still looked down upon too much in fashionable society for it to be sought out by parents for their kids. But because dollars (pounds) are tied to having a formal diagnosis, people seek out the diagnosis if they think the services will help their kids.

As to why does a doctor need to do the diagnosis? Because (s)he's as convenient a gatekeeper as anyone. If you could self diagnose, then many more would be self diagnosing in order to try to obtain governmental money.

Joe

tinted said...

Hi, yes there seems to be some problem, but thanks for your reply - that is what I think too.

laurentius rex said...

Well sometimes self diagnosis is as good as any, when it is validated.

Martijn Dekker I believe came up with the notion of peer validated self diagnosis.

But to keep the gates, I see no reason why any competent psychologist outside of the field of medicine could not diagnose, indeed in my case it was an occupational psychologist who hinted at something more amiss than dyslexia but left me to go through the formalities of the health service to find out what, his testing being used in the eventual diagnosis anyway.

One can sometimes successfully diagnose even medical problems over the internet, I was complaining somewhere about my balance and someone hinted that I go look up benign paroxysmal positional vertigo. I did and then went to my Dr described my symptoms and what I thought the diagnosis might be and had it confirmed :)That diagnosis does not come with any useful trade off in terms of access to designer drugs or other benefits though.

The way I would configure education is to abandon the notion of special education altogether, in effect making all education special and individually tailored to the childs needs. That would not need diagnoses of any kind merely observation and carefull assessment.

Even Lorna Wing has stated, that in the face of Autistic appearing symptoms and no diagnosis, if an autistic specific intervention proves useful, then why not use it.

There is always a problem however being locked into a diagnosis when there is only one form of one size fits all intervention available, that of the impossibility of changing later if doesn't work out.

If someone is diagnosed with an organic disease and dies, an autopsy will reveal whether the diagnosis was correct or not.

That kind of organic confirmation will never happen for Autism and a vast number of interelated conditions because they are neither sufficiently nosologically distinct or organic in origin.

David N. Andrews MEd (Distinction) said...

Joe: "As to why does a doctor need to do the diagnosis? Because (s)he's as convenient a gatekeeper as anyone. If you could self diagnose, then many more would be self diagnosing in order to try to obtain governmental money."

This would cause a problem... what measure of objectivity is there in self-diagnosis? Self-diagnosis has some potential flaws, although I do not see them as insurmountable. As Larry said: "Well sometimes self diagnosis is as good as any, when it is validated."

"Martijn Dekker I believe came up with the notion of peer validated self diagnosis."

Yes, Larry, it was indeed Martijn who came up with that, because of the issues known in self-diagnosis, such as objectivity, validity, reliability and so on.

"But to keep the gates, I see no reason why any competent psychologist outside of the field of medicine could not diagnose, indeed in my case it was an occupational psychologist who hinted at something more amiss than dyslexia but left me to go through the formalities of the health service to find out what, his testing being used in the eventual diagnosis anyway."

I agree. In fact, for autism issues, since we are looking at people's social development in particular (and we're looking at that development in its various contexts), I'm not sure that the bog-standard 'I wanted to be a psychiatrist but I failed what I needed to get into medical school' type of clinical psychologist is at all suited to assessment and diagnosis for autism; to me, the more appropriate people are indeed educational, occupational and forensic psychologists (since these are the ones who are likely to come into contact with the autistic people who were missed by the children's health services in the beginning). There also used to be a type of psychologist recognised by the BPS (and trained/verified by them via the independent Diploma route) who had qualified in 'the Applied Psychology of Teaching and Learning', whose training included assessment and diagnosis; such psychologists were specifically trained to teach psychology (which I feel was too restrictive) and who would be working in institutions where the emphasis was on learning at the Higher Education level. This sort could also specialise in the situation of autistics entering higher education and running into difficulties owning to lack of effective assessment and diagnosis in earlier life.

"I was complaining somewhere about my balance and someone hinted that I go look up benign paroxysmal positional vertigo. I did and then went to my Dr described my symptoms and what I thought the diagnosis might be and had it confirmed :)"

You wouldn't get away with that here in Finland! The medics here tend to see it as THEIR preserved right to be the diagnostician, even though most of them are very poorly trained compared to UK and US medical practitioners.

"The way I would configure education is to abandon the notion of special education altogether, in effect making all education special and individually tailored to the childs needs. That would not need diagnoses of any kind merely observation and careful assessment."

I've been trying to work that into the system for ages. It won't happen easily because there's a lot riding on the 'special education' thing, and people do tend to get very upset if one suggest that their preserve should be subsumed into a larger field. Which is a pity because the idea you have is exactly how education needs to be set up! In that way, there is no such thing as a stigmatised kid, because all special educational needs are recognised and dealt with in school. This wouldn't necessarily put educational psychologists out of work: in fact, if anything, it would link us more closely to the issues we have trained up to work with... instead, we'd be consulted, only needing to formally assess a student if there was some great issue preventing progress. This would ease caseload numbers, and therefore allow us to perform higher-quality assessments than the limited time-frames we have now allow us.

"Even Lorna Wing has stated, that in the face of Autistic appearing symptoms and no diagnosis, if an autistic specific intervention proves useful, then why not use it."

Indeed, and this fits in well with the five-level in-school system of providing support to students currently in use in the UK. I wish we had that system her in Finland. I should really be introducing that idea here. Mainstream and special education are so separate here that it is hard to see where they actually come into contact: the special education class in the vast majority of Finnish schools is just a dustbin. And the special schools have large numbers of Asperger-autistic students in them all having been misdiagnosed as 'dysphasic' - and this misdiagnosis happens on purpose, because at least then the student will get the professional attention in school that s/he needs, because there is not a single local authority here in Finland with an identifiable policy on the educational, social and occupational development of autistic people within the borough. If you exclude the 'we couldn't care less' policy that is very evident up and down the country.

laurentius rex said...

The example of self diagnosis I gave was relatively trivial, at about the same level of having a cough and concluding it is a common cold and not pneumonia :)

My own GP who referred me for an AS assessment (an experienced psychiatrist himself at that time) said that I was his first patient with AS but that on the experience of sending me for a dx he had begun to recognise it in others of his patients.

You only see things when you know what to look for.

Jeff said...

Interesting perspective. I've always been troubled by the distinctions beteen Autism and Aspergers, or HFA and LFA. I've come to believe that most of these differences are the results of various levels of intelligence, communication, teaching techniques, sensory impairment, luck, social circumstance, and personal coping techniques.

From what I can find, Deafness is not considered a learning disorder. It's a sensory difference that - if not accomodated in teaching method - can come to mimic the symptoms of a learning disorder. Deaf people cover the entire bell curve in potential intelligence. We don't have a "High-functioning Deaf" classification for those who manage to learn lip-reading. Nor do we have a separate disorder for deaf people who can speak.

Autism is also a sensory difference that encompasses people of every intellectual ability. Unless it can be proved that Autism directly causes retardation, I think we need to stop classifying it as a learning disability and start looking for efficient ways to educate around the sensory issues.