Monday, June 12, 2006

The sociology of Autism

Today's blog is inspired by the fact that I am facing two Sociology exams on Friday Afternoon.

Now I took up Sociology because I wanted to widen my perspective on this phenomenon called Autism, as much as for any other reason to add another "ology" to my qualifications.

I think most of those blogging on the Autism Hub are sociologists of one kind or another whether they acknowledge it or not, for what I see is an acceptance of autism that goes beyond medical labels and descriptions of traits, to an understanding of how we deal with autism either as individuals or as parents, is sociological. How autists are educated, diagnosed, discriminated against, stereotyped; that is all sociological, and those who look merely on the "disaster" of autism, and accept every fly by night explanation or offer of a cure are missing the context of their own being as a participant in a wider society that has structured their beliefs, their faith (or not) in medicine and science and their belief that something must be done to relieve them of the guilty burden they feel (whoops straying into another "ology" here)

As a youth, I looked down on Sociology as a "wooly" discipline, studied by those who couldn't think of anything better to do, but "wooly" though it is, it certainly has helped me to realise that Autism is whatever people think it is. The very traits of Autism and its diagnosis by behavioural observation with its corrollory, the frantic search for biological and neurological indicators, shows that we do not have any definitive answer to the question.

How autism is diagnosed, how it is treated(clinically and educationally) and how we are treated (by our peers and administrators) is governed not so much by the autism, its severity or its cryptic qualities, but who we are in society, and what society we are in.

Both socialised medicine and insurance based medicine favour those who have the education and the social status to challenge peremptory decisions. That goes not just for Autism but for any medically diagnosable condition.

Those who don't have the status or the income find themselves accepting whatever is available, and often there is very little growing lesser the further into the third world you go (which is as much present in North American and European cities amongst the disenfranchised poor as it is in Calcutta or Rio.)

I am writing to you, because I am educated, I have welfare, and I have an attitude too. Otherwise I would just be another lost soul on this sink of an ex Council Estate, living in a condemned flat.

Who is the voice for all those disenfranchised autistic people I wonder? Certainly not the curebies with their "me me me" culture.

If you are a parent on such a nightmare estate, or maybe even a lately diagnosed "aspie" or whatever, you are the victim of just about every piece of misinformation out there, particularly on the web (assuming you have any access to it at all)

Too many spokespeople on both sides of the Autism divide come from comfortable middle class backgrounds, the well heeled and the well educated, whilst the basic struggle for survival leaves you with little surplus energy or cash for such things.

I spend an inordinate amount of my money on my internet access because it allows me to escape the confines of this existence and to "punch beyond my weight"

You don't expect many fellows of the Royal Society of Arts to be living in my circumstances, it is not the kind of organisation that most working class people join.

Well there is a sociological thesis about participation in such organisations waiting to be written, if it has not been already, for the critics of pluralism, would allege that even the interest groups are run by self selecting elites.

Sadly in my adventures into such territory I often find that to be the case.

Makes me wonder how we can ever set up an authentic and credible grass roots group for autistic advocacy that does not rely on the relatively advantaged to give it credibility and therein instant lie the dilemma, which is the curse of being able to remedy it. You need leisure and income to devote to such causes, and the leisured and wealthy often do not understand what it is not be of their company.


Estee Klar-Wolfond said...

It is why autistic people need to advocate for themselves and the rest of us need to take a back seat and listen.

The Autism Acceptance Project does that. All of its material is reviewed and edited by autistic people.

It's time that parents, educators and society listen.

Thanks for this post. Some us try.

Kristina Chew said...

Thank you for bringing up the issue---the difference---of class. I was part of a presentation on autism last week to the New Jersey Statewide Network on Cultural Competence. One of the presenters was originally from the Dominican Republic and she spoke about how a lot of immigrants fear to get a diagnosis, let alone services, for their children out of fear of having to deal with government authorities.

ballastexistenz said...

I've found a lot of class-related conflicts in a lot of 'progressive' circles in the USA.

I'm really tired right now, so I'll just link to this blog post by Muskie to sum a lot of it up.

Another thing I often run into, that seems to stem in part from class differences, is a kind and level of escapism that someone in my position could not possibly engage in if I wanted to survive. But people in these 'progressive' circles can afford (literally afford) to engage in that exact kind of escapism, because there are certain aspects of reality that they can (again literally) afford to ignore.

Not to mention the patronization that goes on.

Sometimes I feel like the only reason I stick around in some of these organizations, is because they're in desperate need of input from people who aren't relatively well-off. The trouble is, I notice that a lot of us can't stomach sticking around very long, so there's always kind of a rotating string of poor and working-class people who pop in and out of these organizations, and only a few who stick it out.

Joseph said...

What do you think of the issue of accomodation as something that can only be provided in a wealthy capitalistic society? In the third world, autistics could hardly hope for any accomodation, services, or government support.

laurentius rex said...

Joseph are you goading me into talking about socialism instead of sociology?

For what it is worth, it is Western Capitalism that is creating many of the problems in the third world, we are not only draining them of resources, but of skilled people too.

One point I was trying to make though is that just as first world wealth can be found in the third world, third world levels of deprivation can be found in the first world,

Not every kind of accomodation for us depends upon well paid professionals, a lot of it depends upon common understanding and knowlege.

ballastexistenz said...

Indeed, the branches of my family that are more "accommodating" of neurodiversity in general are among the poorer ones. Same goes for someone I know whose family comes from a "third world" village. This is not to make any universal statements, but just one more argument for the fact that wealth is not all there is (or even most of what there is) to inclusive societies.

Joseph said...

Certainly acceptance could easily be more common in the third world, where there's not as much obsession with normality and financial success. But disability aid is practically non-existent.

Anonymous said...

I am studying Autism for my Biology and Sociology Inter-Diciplinary. Everything that is involved, from diagnosis, treatment, all the way down to education and adult-based learning is all to do with the Sociology of Autism, and how others percieve Autistic Spectrum Disorders. The key to understanding is through innovation and education to those who do not suffer with ASD or the lesser Asperger’s syndrome. This in turn will give society a better understanding, and may prove as a drive for society to not be afraid of the unknown and help. There is plenty of support, but at the same time it is not enough, and it is hard to find.

laurentius rex said...

Well anonimous your own comment can be deconstructed to show you are infected with a meme too, "suffering" and the upharsinatory distinction between "the lesser" aspergers

You have a long way to go yet.

The key to understanding is to realise that nothing is concrete, academia is a very schizm ridden community wherein each domain considers itself to be the "Queen of sciences"

Innovation without regard to a lateral and interdisciplinary overview involving both the cognitive sciences, advanced physics and philosophy.

The University is but another "medium" and a well massaged one at that :)

Anonymous said...

The 'lesser,' is with regards to the symptoms that come with Autism. As you already know, Autism is a spectrum disorder that has a range of symptoms. I was not disregarding it as if Asperger's does not matter. Have you read this article?

Let me know what you think on this.

I'm still learning yet i believe that we will never know all there is to know about autism. We never will no matter who anyone listens to or how advanced science becomes, we will never understand autism completely, even those who suffer from autism at both ends of the spectrum.