For whom does Autism Speak?

I have kept rather quiet about this until I was sure the domain name was active, but I now own the domain name autismspeaks.eu and I intend to hang on to it.

I assert my moral rights to the domain name on the basis that it is more legitimate for me as an autistic person, having some involvement in the world of advocacy to claim that autistics speak for autism in Europe and not organisations whose motivation is to falsely claim that they speak for autism, be that Autism Europe or anyone else.

Given the controversial nature of the claim I have just staked, I intend to keep it in the words of the advertising standards authority in the Uk:

legal, decent, honest and truthful.

Therefore I will not entertain any "NT" bashing or other slurs, I will maintain instead the position of equality of all persons no matter what their neurological make-up.

Because there is at present no one organisation run by autistic people that has a monopoly claim to representation any more than any other, I intend to use the site mainly as signpost to the multifarious world of autistic advocacy, with the usual "health warnings" that such sites as can be found via hyperlinking do not necessarily reflect the views of the this particular author. Though you can be sure that I will, because this is an EU domain, lean towards the much neglected European perspective.

Don't expect wonders from this site overnight, I am well busy at the moment, with my research and my various comings and goings in the autistic world.

Social Service

Laurentius has friends believe it or not and they tend to get on at him for being a recluse and try to get him to come out sometimes.

Well I did so the other day but had to explain that because of my studies and my other involvements that I had at least five better things to do, two that had deadlines in the next week and one that was already overdue.

That's my life, you have seen one of my mindmaps, the one for tasks outstanding is even more frightening in the number of branches.

I don't know who I am sometimes.

For instance I am going to London again on 5th February for an NAS launch, but I have booked my day out.

I am spending the morning with the NAS publicity guy as I have a lot of outstanding issues to be discussed with him (you may recall my challenge from an earlier blog) So I will have my advocacy hat on. I then need to take advantage of being unlike Elvis and still in the building to use the library, and I need to interview one of the staff members, so I will have my researcher hat on.

When I go to the big bash at Houses of Parliament (hoping I do not hold up the queue to get through security as long as I did last time because of all the OCD gear in my bag) I shall ostensibly have my NAS trustee hat on, wherein I am supposed to be nice to everybody, but I will have another hat on too, because I need to use this schmoozing opportunity to tap any potential "celebs" to get there support for Autscape.

Not forgetting the two papers I am writing and my next neurologist's appointment, or the endless hassle of phoning people up who are tardy in replying to my requests to use there facilities for my research.

Well this time last year I was heading for a breakdown, no me, not my lLandie (as that allways breaks down)

The first part of my research is now live

I have now got permission from the ethics committee to launch a questionnaire on line.

I hope some of you may trouble yourselves to complete it, never mind it's faults, I am sure you will find many :(

I expect I will later on as well :( :(

I hope all the regulars here are convinced of the bona fides and you can keep up to date with the research on my research blog. http://autvideo.blogspot.com/

The survey itself is here, http://www.survey.bris.ac.uk/bham/autvideo

and only I can gain access to the results or information so it is confidential.

If you are answering from outside the UK, the ethnicity data is UK centric, however you can fill in a section to say that you are not UK resident, and that would help me know where the replies are coming from.

Naturally it would be extremely difficult for non UK residents and people who are distant from Birmingham to participate in the next stage so my apologies there.

Academia takes it's toll

I suppose, looking back that my blog has been much concerned with the trials and tribulations of being and Aspie in Academia.

I left the relative security of taught courses in further education for the insecurity firstly of a distance education course, and now research, travelling deeper into Terra Incognita with each move.

I know it is difficult enough for most of us at any level of education, either as children or adults. Support did not exist when I was a child and the whole ethos of education was radically different from what it is today (not that either is better than the other they are both as bad)

I was pushed toward University when I was younger, but I was clearly not ready for it, either academically or socially.

Today I am maybe more successful than many of my peers simply because I have all those years of living in the world behind me. In a strange way I never felt fully adult until both my parents were dead.

Nonetheless my particular path is not one I would recommend to any other aspiring Aspie academic, it has been taken of necessity rather than choice, both because of the limited funding available to me, and the choices dictated by my initial lack of the right qualifications. It is also a function of the callous disregard that this government has towards reskilling people of an older generation http://news.bbc.co.uk/1/hi/education/7178836.stm

For those of us who were not successful the first time round this is devastating news, socially, economically and educationally we are being written off.

For me nothing is certain, I was just about able to pay for my studies last year, and at the moment I have embarked on a long process of research with no certain future so far as funding is concerned.

Research that is not just for it’s own sake but I hope will make a difference to the understanding and conceptualisation of autism as well as having pragmatic applications for the design and delivery of education to my peer group.

It is something, whilst I await ethical approval and all the other bureaucracy, which is taking me deeper into the realms of cognitive neuroscience.

That is the problem with my research, it was bad enough last year having to deal with the lack of structure brought about by a non resident course, now I do not even have the structure of modules and guided learning to comply with. It is not so bad for all researchers, many will find that they simply slot into an already determined research programme, not for me alas.

I do find however that mind mapping software is invaluable, because I can keep my notes all linked within this structure albeit it is getting somewhat re-entrant in the complexity of its loops and links as you can see from the illustration that heads this blog, though in a way that appeals to my mind which seems to revel in multidimensionality. I have already conceived of a vast array of statistical tests I can carry out on my first questionnaire in order to see how many different sub sets I can create from one set of data :) All of that somewhat off topic perhaps.

According to my supervisor I am well ahead of the game, many students not having reached this stage until the second year, but without anything to guide me I actually feel awfully behind.

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.

In some peoples eyes this would make me a despised “super aspie” but it has taken me more than forty five years since infants school to get this far, I am way behind Temple Grandin, Stephen Shore and Wendy Lawson as if anyone is counting.