Sunday, July 27, 2008

Off to autscape, musings on our "tribe"

Had to be careful not to recycle an older title, but I am back to the subject of autism again for this blog.

For the last two years Autscape has either been preceded by or followed by an operation, this year I have far more to worry about on my return :)

Not that being part of the organising committee for Autscape this year has been the proverbial bed of roses either. How previous participants (as against new ones for whom it won’t matter) will adapt to the change of venue, I don’t know. It remains to be seen.

The trouble is nothing is without criticism, and this blog is not the place to rehash all of the various concerns about the venue, and about the ethos of Autscape, whether it should be outward or inward looking, been there done that and got the T shirt as they say. Suffice it to say I sometimes find myself in the middle, defending against unfair criticisms, but adding a few of my own. Nothing is ever perfect and we should always be striving for what is most important is that there are enough people willing to continue with it in whatever form the future dictates.

The theme is Inertia and Action, and sometimes I feel I am too much stuck in the former, I know that when I get back I have to spring into action again and finish off all those half finished presentations I am due to make in September notwithstanding trying to wrestle up some money to continue my research, without which these presentations might suddenly lose their context.

Where the big money in Autism is, is certainly not where I am at anyway, educational approaches to autism get overlooked, and the new black is going to be cultural studies, where yet another strand of non autistic academics find rich picking studying all those funny autistic "tribes".

I ought to have welcomed Stuart Murray's book on the representation of autism, but I do not, because well researched though it may be, it is part of a wider economic/social process of marginalisation which I have fought even to get a toehold in academia myself. Every book that is written about us by someone else is one less book written from within.

Why don’t I write a book myself, I hear the protest back, well it has to do with the fact that the likes of Stuart Murray, and Roy Grinker and dare I say it Kristina Chew (whose blog I nonetheless enjoy), have effectively colonised the genre wherein I would write.

I mean no disrespect to these academic writers but I do say to them that they ought to carry a bit more social awareness of what they are doing in the process, how it is part of the delegitimisation of the authentic voice, pushing us back to the familiar territory of writing self help manuals and autobiographies, instead of engaging the vital material of autism and where we fit in the contemporary world itself.


Maddy said...

Could you possibly add a link or reference to Autscape please?
Best wishes

laurentius rex said...

There is a link if you click on the words of the title of this post it will take you there.

Catana said...

Why take the attitude that the genre has been colonized to the extent that there is no room for other voices? I've spent the last few years analyzing giftedness in a way that hasn't been done by the academics. Whether I write a book depends on my ability to pull it all together and get the thing done, not on any feeling of being pushed out by the professionals.

I've started to apply the same level of analysis to the autism spectrum, but there I have a different problem -- my Asperger's symptoms are so mild that I'm, effectively, invisible. I have trouble legitimating, in my own mind, my right to speak as in insider.

The energy of too many autistic people is taken up with the struggle to be heard and to be taken seriously as thinking adults. The level of analysis on some of their blogs is awesome, but the focus is sporadic, pushed aside by the need to deal with everyday concerns. I think this will change, is changing, very gradually, but it will take time.

laurentius rex said...

It is a sociological phenomenon I am secure the Nominomialist would fell capable of expounding upon elsewhere.

If one has climbed the academic ladder to the degree to which one becomes an "authority" on a subject one effectively becomes an authority, one alters the power relationship and because elite privilege is distributed unequally it becomes harder for certain minorities to achieve that position, thereby it is harder for the outsider to get the recognition in peer reviewed journals or to achieve anything much more than self publication when the power relationship also governs the economic one in deciding who gets published and reviewed and for what.

Which is why we tend to be in the easy market of simply relating our own experiences.

That in itself is not enough though because it leaves the "colonisers" unchallenged to comment on us with freedom to define us in ways we would not necessarily be defined.

This is very much the motivation for my attempting to climb the greasy pole, to alter that balance in both medical research and in sociological research.

The extent to which one is an outsider is also a philosophical one, for if one does not distance oneself from the negative side of the power relationship, then one legitimates ones discourse whereas if one continues to maintain the ethics of the status quo then one risks being seen as part of the problem through ones denial.

If you have the diagnosis and the academic ability to challenge the status quo from within, then that is what you should do rather than defend it. This at least is my platform

At the end of the day who should profit from being autistic?

One can legitimately profit from providing a service, that is making ones living in an ethical way, but when one talks about the way in which media representation makes the public reaction to something like autism, one cannot actually escape if one is not autistic that one is part of that same machine.

It's not anything that essentially confines itself to autistic discourse either.

If you come to our land to make a living, then pay the taxes to us :)

Catana said...

Why climb the greasy pole? I dealt with that a long time ago, as someone who gave up on college and would never be able to get published in the professional journals. The question I finally asked myself was "who am I writing for?" When I decided that I was writing for the gifted, those who needed information, rather than for the professionals, most of the problems dropped away.

Who reads professional journals? Who are you trying to reach? Isn't the kind of analysis you're talking about possible in a book by a non-professional written for the general public? Why struggle with the greasy pole and thus reinforce the idea that academic publishing is the only legitimate path? Why play their game rather than our game?

laurentius rex said...

I think it is very important to reach the opinion makers, as much in science as in the humanities.

I am not sure who Stuart Murray is writing for, but Roy Grinker is writing for the same potential audience as David Kirby.

If you go back to my post on IMFAR you will see what happens when the science proceeds without our input.

Being there is an important issue, if you can do it, then go for it, don't be put off by those who hold the majority share in the power relationship.

If I listened to all that has been said to the negative I would not have the confidence that I had any academic ability worth a bean.

Anonymous said...

Midnight In Chicago effectively couples research with the voice of autism in their free audio podcasts. The latest one follows up on a 13 year old boy who has autism...and he speaks about an autism organization which he believes denies autistics their right to free speech. That would of course be Autism Speaks.

The podcast can be found here:

The title of the podcast is "Special Feature Interview with Douglas Giesel and An Update Interview with Lewis Schofield"

His portion of the podcast lasts 20 minutes or thereabouts, but his commentary about Autism Speaks comes close to the end.