"Into my heart an air that kills
From yon far country blows:
What are those blue remembered hills,
What spires, what farms are those?
That is the land of lost content,
I see it shining plain,
The happy highways where I went
And cannot come again."
AE Housman.
Today I achieved something, that might not mean a lot to many people and for the world of me I cannot relate to Autism, but for the first time in my life after a year of learning I felt able to enter the deep end of a swimming pool and to swim 25 metres to to the end of the pool and then to swim back again toward the deep end completing the second length of 25 metres.
I often wonder on reading the parents blogs on the autism hub, if back in the fifties, before I was five, in an alternative universe where they might have been internet savvy and had the means to disseminate there joys, frustrations and perceptions of that puzzle that was the infant Larry - what would have appeared as a representation of my life?I do not know the half of it even. I know the pictures at least but the text is lost, and even so what would it say about me today, about what I am and what I became. It would have been at best an incomplete story.
"Failure to replicate findings can be explained in a number of ways. Either the phenomenon does not exist and the initial, positive finding was a random event. Or perhaps there were differences in the samples used; one study may have tested higher-functioning or older individuals while another used those with lower IQ. Many studies have small sample sizes and as a consequence have insufficient statistical power to reveal between group differences. Procedural differences may also yield different outcomes......"There speaks someone who has read many studies critically in the way they should be read, and he even includes his own work in that summary.
"The speculations in the last paragraph bring us back to the question of what it must be like to be autistic (See Frith and Happe 1999). Ultimately, the psychology of ASD must provide an answer to this question. But it must also provide an explanation. Readers who have made it this far (as well as those who have skipped straight to here) may be expecting such descriptions and explanations as well as a punchy take-home message. Without wishing to be unkind to colleagues in the field (or perhaps wishing to be unkind to those who often misinterpret their ideas), the message is probably that we are sometimes too quick to generate quick snappy messages and that we are often too uncritical of the work we ourselves do. Autism spectrum disorder is now known to be a set of conditions that should not be reduced to a simple dichotomy of presence and absence. When present the conditions are multidimensional and complex, and although they share the common characteristics of social impairment and repetitive behaviours (at least from the perspective of a typically developed person) they often exhibit additional features that are not necessarily defining features of the spectrum. Such complexity requires a more subtle explanation than a simple reduction to an absent theory of mind, a failure of affective appreciation, diminished sense of self of fragmented perception. The complexity of ASD requires us to take a more distanced view and to go beyond simply trying to find new ways of describing the fact that people with ASD are autistic Science is about the reduction of complexity to simpler sets of entities and processes that interact in ways that are controlled descriptions of the behavioural manifestations of ASD. The challenge that faces us now is to step outside our own narrow conception of the issue and to work out how they fit together and why."It is very pertinent for me to be considering that too, at a time when I am currently trying to attract funding to my own research in the hope that I will in turn not replicate the faults of all too many small scale studies.
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 :)
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.
Note that I am just back from IMFAR and about to relax in a hot tub. When I have more time to do so, I hope to hotlink to papers, presenters, people and the issues I write about here, so come back in a couple of days to see how I have expanded this.
The second, is to speak of my other role there as an advocate and ambassador.
During the presentations I was both, I wished to ask relevant and challenging questions of the science and the methodology where appropriate, but also at points to challenge the ethics where necessary. For example a study that was taking samples of CSF. I told the Dr behind that, that I thought that it was an unethical and intrusive measure considering it was not medically required. It raises all manner of questions about what is informed consent when dealing with minors and people who have impaired social understanding, heck I have been through the ethics meat grinder myself, so I ought to know.
Anway, I think the Introductory keynote speech by Frankie Happé was enlightening, she has come a long way from the article in Uta Frith's book, that 'dissects' the autobiographical style of those few published autistic authors there were back then.
She was questioning the single etiology of autism, and talking about multi axial conditions converging in autism. I challenged her to think even further to think beyond a triadic axis and to what it might look like if you forget the strictures of DSM IV TR.
There was an interesting 'round table' on diagnostic schedules, ADI ADOS, DISCO, Class’ battery etc. (can’t remember the name of the other one of hand, brain fade)
I raised numerous points about the inevitable restrictions of defining something and then only looking at what you define as within it.
The biggest challenge came on the second day with Geraldine Dawson’s key note speech. The Chair for that session was not allowing questions, so there was no roving microphone, but I was not going to be stopped from asking the question I wanted to, on ethics and respect.
I started by referencing an article in this months Journal of Autism and Developmental Disorder, which talked about autistic subjects and “healthy” controls
Did this not say something about an attitude towards ethics and a lack of respect that the science was dealing with real people who deserved that respect, as her peer researcher Morton Gernsbacher has pointed out.
What shocked me, and the audience I guess was not the answer, nor my mode of asking the question, as I was insistent but I don’t think rude, was the reaction in the audience from Matthew Belmonte, who immediately got up and bellowed that he was “tired of hearing that crap” and the usual complaint one hears about HFA’s not caring about non verbal and less intellectually capable autistics. Well that put me on the spot as it was difficult to avoid the proceeding degenerating into a 'Punch and Judy' show, but my response if I can recall properly was to say that I was misjudged by being automatically put into a ‘schema’, by someone who did not know what my involvement was across the whole of the autistic spectrum, a responsibility and duty that I have because of my position in the NAS never mind the many times I have challenged ‘Aspie supremacy, myself as hub members will be familiar I am sure.
Anyway it wasn't my intention to disrupt anything, merely to ask an important question at a point where that ought to have been allowed in the agenda.By the third day, I was worn out, couldn’t take in any presentations, certainly not really feeling competent to question and challenge any more, so I spent my time seeking out posters and speaking to those who were present to explain them. In fact I think having the poster presenters able to speak to their posters was a somewhat better means of exchanging information than the formal presentations.
At the end of the day, I was there to hear what is current, and seek out what is relevant to my own research and to follow that up, and besides the advocacy which was important, there were other researchers in fields that have a bearing on my own hypothesis who I wished to make contact with and exchange ideas.
As for any of the parties who were present for the event and are checking up on me via my blog. I expect eventually the paper (whose abstract I had submitted during the call for papers earlier this year) will eventually see the light of day somewhere. Most likely in an open access journal, because of my own ethics. You will have the opportunity to hear me present on my own Research during the NAS International conference later this year, and I promise to make it entertaining as well as informational as befits a media studies graduate.
Be seeing you :)
I have just been reminded after reading Aspie Bird's blog, that I saw the late Genevieve Edmond's guide for sale recently alongside Marc Segar's guide.Here I sit in a University owned hotel lobby having just checked out, reviewing my life I suppose, whilst waiting for the coach to take me back to the remainder of the residential weekend.
My parents have respectfully “shuffled off” there “mortal coils” and what is their legacy? Apart from myself and my brother, do they still live in anyone else’s memory?
I know my mum left concrete marks in the most literal sence, in the form of ramps to buildings. I know these would have come eventually since the law now demands them, but without the pioneering efforts and the campaigning would that be law now? I do not think so.
So whilst my mum was alive I was as active in those campaigns as she was, as active as I am now in the autistic world.
My dad? I don’t know, I suppose had he and my mum not separated, my mum would not have made those changes in her life that led to that campaigning, and by implication would not have drawn me in.
I suppose too he played some part in the community during his lifetime. He worked, contributing to the economy, making the tools that supported the industrial life of
He served in
Back in civilian life he was part of the popular cultural movements of his generation, as a jazz musician, and later part of the folk revival, which as you can see from an earlier blog I became part of too.
Like all of us, he did bad and regrettable things in his life, I can’t say I have not done any myself, but in subtle ways a world in which he had never been, would not have been quite the same.
I know I face upheavals to come in my life. I have the prospect of kitchen and bathroom works in my flat, the disruption of which I am not looking forward to, they are the necessary improvements which should make things better for a while, before the next upheaval when I have to leave my current flat altogether as it is still scheduled for demolition around the time I will expect to be graduating as a PhD
It is like that envisaged course completion, some way off, and in a way so far off I find it hard to believe whether or not it will ever happen to me, or if something else might happen in between to cause me to leave my flat or my course of study earlier.
So why am I writing all this now.
I suppose it is reflecting on the fact that I am here at Birmingham, a year on from when I was at Birmingham last year, on a similar study weekend, planning my final assignment, and unsure where that was leading. I did not feel well a year ago, the stresses had really got to me, but I survived and moved on. For those of you who have followed my blog, it is all there to see as it happened.
So this time I am not a part of the course, I was studying. I am enjoying the temporary status of a paid lecturer instead, and nervous as to how my delivery yesterday was received. Being as I was paid for it, could I have planned it a bit better? Given it more attention? If I have another opportunity at a further study weekend I can certainly use the experience to improve on it.
In any case I thought I need to improve my ability to be more impromptu in my delivery, to be confident enough that I do not need to read from my prepared script.
If you see me in my “Whichever way” video, you will see me delivering a script, literally. I am reading off it. So I was when I first made the presentation that I later had filmed to make the video. Well I am trying to lead my life a little bit off the script now.
Perhaps there is a hidden script behind my life, and the future is already written, but I guess, nervous as I am even for the events of this afternoon, when I hope to find my flat as I left it, and not burgled, waiting as I am for the results of a brain scan I had last week, I hope that there is no melodrama waiting me. For now this actor is better off not knowing, else I could never cope with the present.
What will the world wreak tomorrow?
Tonight I have no care, and only am.
One now, one never moving instant instinct.
Continue time to turn, throw over what I feel
Return the terror, trample my delight.
For burns in my mind, memory of the light.
Outside, the blackness, shadows of the night.
Inside my soul, shines celebration of the light.
Watch this space, same time same channel ……………….
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I have a desperate schedule to keep up as I have already been accepted to present on my Research in September, and before I can even get ahead with writing that paper I have committed myself to writing another of which more anon.
