National Autistic Taskforce

Life of late has had its ups and downs, and I have certainly been feeling both precarious and gloomy with the shortening days.

However there are some exceptions, and earlier this week I was in London, for the launch of an important new project called the National Autism Taskforce at the House of Lords no less.

My colleague and fellow Birmingham Alumnus Damian Milton sums up the aims in his speech here.

Why it is of so much importance to me, as although this might not be the first Autistic led project out there, we have had Autscape since 2005 and there was ANI at least a decade before that, is because this is the first that I am aware of which has had it's launch in such an auspicious public setting, with members of the NAS and Autistica present as well as well as politicians so nobody can pretend to be unaware of us. We are not hidden behind the curtains any more.

It was also good to see Professor Emeritus Rita Jordan there from Birmingham, another old sparring partner as it were from my first days at Birmingham back in 2002 (so long ago now).

Dinah Murray is also a key figure, without whom this would not have happened, undoubtedly one of the key figures in the history of Autism in the UK who recieved a well deserved lifetimes award from the NAS this year.

I also think we have to thank Dame Steve Shirley who might seem to be an unlikely figure in this, given the way things stood a decade or so back. I can remember however hearing her speak about her attitude to funding and wanting to see concrete results from whatever she was investing her charitable funds into, and in that respect she has not changed, which is why it is so gratifying that she is funding this project, led by a group of Autistic people who are not known for not being "neurodivertistas" who are certainly not going to give any ideological ground on the goal which we are seeking, which amongst other things is to bring the Government and agencies to account for the shocking failure to implement a set of policies which have been built into law, which are supposed to safeguard vulnerable autistic people, who have lacked the advantages and access to advocacy that they should have had.

So it is not a project about us, it is a project about what we can do with our expertise and knowlege to make real changes.

Yes Tuesday 12th of December 2017 was a very important day for Autism and I am as chuffed as the proverbial bowl of badger fat to be a part of it.

The world of the 1990's

I am a bit of a sucker for buying second hand textbooks from the charity shops, you can usually pick up something that might not be the latest edition, but certainly costs you a lot less than the present edition would. I picked up a couple today on psychology.  I should have checked the publication dates of one of them a bit more carefully however. It is called "The Handbook of Clinical Adult Psychology, second edition" I will not embarras the editors by naming them. Its date of publication is 1994. I guess it only serves as a historical artefact showing the state of play at that time.  It is not irrelevant though, as a perusal of the index has not one mention of autism or asperger's syndrome anywhere. I was eventually diagnosed in 1999, but it shows you pretty much why I did not recieve a diagnosis in earlier adulthood, it just was not on the horizon of most clinical psychologists.

I was in fact diagnosed by a clinical psychologist not a psychiatrist, and that was at my own insistence at the time. For various reasons my GP had wanted to send me for psychiatric evaluation (being himself a part time psychiatric consultant) I managed to sidestep that by suggesting that I should be evaluated elsewhere for possible asperger's syndrome. The cynic in me suspects he only agreed to that to "humour me" figuring that eventually he would be able to slap a neat little psychosis on me by default (as you do). Turns out I struck lucky though, and the clinical psychologist who evaluated me, had been trained by Digby Tantum, who prior to his move "oop north" had been collecting street lamp numbers at Warwick University.

However to get back to the point, the text book shows that for the most part asperger's and autism was not even on the street map until the very end of the nineties.

In 2002 I met the man who had been largely responsible for getting asperger's syndrome in the the American Psychiatrist's Association's Diagnostic and Statistical Manual. editon four. I say met, but it was more like I confronted him. After he had given his presentation, he called me aside, and I expected he was going to give me a going over, for having interupted his presentation with my objections and questions, but instead we settled down to a long conversation about our respective viewpoints. I don't know if it was an education to him, but it was to me, especially so far as the workings of the DSM go.

DSMIV has come and gone since, and the guy is now in a minority, as asperger's syndrome did not make it to the next edition. I amongst many others submitted a paper to the consultation process and for whatever others might think about the outcome, I was pleased that it went the way I had wanted, and left poor Fred Volkmar (for it was he who I had conversed with in 2002) in the shade somewhat.  But you know that is psychiatric politics. Having this time had the privelege in 2014 to be a presenter myself for the UK launch of DSM talking about the impact of diagnosis on me.  Again co presenter Cathy Lord also mentioned the politics behind the scenes and why asperger's syndrome gets "grandfathered in" under the general heading of Autistic Spectrum Disorder.

Well fast forward back to 2017 and I have my doctorate as "academic without portfolio" now. One of those awkward autistic academics who are busy trying to make a mark on the landscape of autism.

I have recently written the first draft of an overview of "Autism in England" which includes a historical romp through the phenomenon, going back beyond Langdon Down, and back before Shakespeare was the Warwickshire Lad. (William not Tom I must remind people who can't remember anything before 1990) It is in part my answer to the vexed question of where the autistic person sits in all of this narrative, but here you go, the editor for this is none other than that guy I had a conversation with in 2002.

Some say that Nadesan was the first to get into print with the idea that autism became part of the psychiatric and psychological narrative as part of a historical necessity (not her words, mine) arising from the rise of particular professions and their focus. I know that I got there before her, I was in fact contemplating a book on that subject myself when I discovered that she was writing something on the same theme. I gave up.

Well anyway this text book I unearthed today, might not be of great value for the psychological landscape of today, but considered as a historical document, it is enlightening.

What does an Academic without Portfolio do?

Continuing the theme from my last blog, what does an academic without portfolio do? Well it is like gardening I suppose, you can't really stand still or the weeds start to grow, and if you leave it too long you despair at the task ahead and lose the energy, so it gets worse.

So what are to be my continuing links with the world of academia, whilst I seek a post and funding?

Well I suppose there is the Autonomy journal, and that nearly did succumb to the aforementioned gardeners problem, as I left it to seed for too long, but I do have another edition in the pipeline and I need to keep on top of that.

I also need to keep my name in the headlines, not so much through writing articles for small circulation, subscription only journals, as that will never do, they will never see the light of day.

No I think I can continue to do the rounds of conferences and seminars, presenting at them wherever I get the chance. I actually think that is likely to have more influence. It will be expensive and I don't know where the money will come from, so perhaps I might even consider crowd funding for this.

I certainly do not want to miss the next CEDR conference in 2018, as there will be a neurodiversity stream next year, and that could be the next biggest gathering of the clans since Autscape, which I really also cannot afford to miss.

There is definately work to be done as the weeds are getting strong already, by which I mean, that so called school of critical autism studies, that has colonised us and threatens our roots and out legitimacy.

I have been speaking with fellow autistic academics and academic autistics this week at Autscape and there is very strong feeling that something needs to be done, to ensure that we are not forever just the performing dogs on the circuit, or food for other peoples research. Autism is a discourse, and that discourse needs to be owned by those who have the most personal interest in its outcome, and that is us.

It is not the only work to be done, again as evidenced at Autscape through the work of Dr Yo Dunn who gave a powerful presentation concerning the disenfranchised Autistic people who do not have the links and community support of our growing band of merry Academics. Those who are deemed to lack capacity and who increasingly find themselves in long institutional stays.

However for the moment, I must take a holiday, and let the weeds on my allotment flourish for a little longer.

Academic without portfolio

It is just over a year since I graduated as a Doctor of Philosophy but my shibboleth access to online journals had been turned off almost as soon as I had submitted. My academic email lasted a little longer, but that was eventually replaced with an alumni one marking the transition from Doctoral candidate to what I have since seen described as "early career academic". That is to say I had transitioned from the highest status  for a University student, to the lowest rung on the professional academic ladder

Indeed it was somewhat strange to consider myself in this position given that I am presently less than 5  years away from age at which I can expect to draw my pension and realism has set in when you consider that only a lucky few PhDs walk into a well paid post doctoral research position within a year of graduation, and that times are getting tougher for academics, what with Brexit, and neo liberalism, notwithstanding that social research into autism is pretty much the cinderella of autism research at this time as the National Autism Project report says amongst many other things.

However am I really an academic without portfolio? One thing is for sure I have no funding to follow my interests further, and have to rely on what tidbits I can pick up in the way of expenses to attend conferences and seminars.

Nonetheless and surprisingly for me, I have kept my hand in, not just with the National Autism Project where I was one of a truly outstanding team of autistic advisors, but with such things as the Participatory Autism Research Collective,  the Shaping Autism Research seminars, and even more surprisingly being invited to present on my Thesis at the Annual Conference of the British Sociological Association. I have also found time to become a research subject (something I swore I would never do again) and seminar particpant concerning autism and the criminal justice system.

Finally perhaps I am not entirely without portfolio, as I after all the principal editor and founder of Autonomy which must count for something.

However in terms of actually undertaking any further research, the opportunities are simply not going to come my way by just waiting and persusing the academic vacancies. For someone like me, who struggles in this world, I have to take the dictum of Hannibal and make my own way, and I think I have actually found one, (which does not include elephants, {in the room or elsewise})

As my blog of some moments ago indicates, I have an interest in diagnosis, it is not a new interest either, as I have spoken on the topic at Autscape and elsewhere before, particularly in terms of what means for identity, the contradictions of it all notwithstanding.

I think I have a very good opportunity to put together a research project, for which there is currently no funding, but would not either be impossible to fund or undertake, and as with all good criminals, I have both the motive and the opportunity at the moment, so it is all looking up.

Disentangling diagnosis.

Diagnosis is a difficult concept for the radical autist to deal with. It is so enmired in the medical model (which for people like me serves only to identify and remedy where possible broken bones and physical maladies) It has always seemed wrong to me that Doctors of Medicine (who are not even real “Doctors” in the sense that I am, Doctor being merely a conventional appellation, but I digress) that Physicians, should have such a powerful goal in gatekeeping those important definitions that have an impact both on selfhood and on social and legal “realities” in the world beyond that having nothing whatsoever to do with bed rest, medication and surgical intervention.

A lot of us talk not about diagnosis in our personal self constructs so much as about discovery. Diagnosis from the Greek means a learned opinion, discovery means the uncovering of something that was not known before, and usually discovery leads to  change in some way or another.

I am not sure Martijn Dekker agrees with some of the things he wrote about many years ago when I was on that discovery path of exploration but they meant something to me then, so I keep the ideas alive. The ideal was of peer validated diagnosis. In common speech you might put it as “it takes one to know one” or you might see it as the Autistic analogue of Gaydar. (Which incidentally I wrote about in my Thesis) for to me the diagnosis wasn’t enough, I wanted to know other people like me and to see if we really did have anything in common beyond the label, and I think we do.

However from the realm of ideal societies and utopias to what can really change, there is certainly a clear and present problem that is being exacerbated by Austerity.

A recent quick survey of the news revealed these two articles. . https://www.tes.com/news/school-news/breaking-news/plans-restrict-autism-diagnoses-will-increase-pressure-schools
http://www.newsandstar.co.uk/news/10-month-wait-over-autism-appointment-fd8bec53-eea5-488d-8511-39315ca1ad85-ds

Those concern children, but believe you me, the failure to discover the inner autistic is going to have a major impact on that childs education and everything that follows after that.

For adults it is no better, there is a movement, not a new one alas, but increasingly justified by the bean counters that there is no point in referring adults for diagnosis when there are no services available for them. You could say it is a total dereliction of duty, given that the NHS at the moment whether or not they are the right or wrong people to administer the diagnostic process because they are at present the de facto gatekeepers.

What I am ultimately coming to is the change I would like to see, and the change I would hope I can influence in some small way, and that is the demedicalisation of diagnosis that is actually possible within the current constraints of our society, without having to evoke those revolutionary changes towards the ideal world, where like in William Morrises Nowhere it never rains.

I think at the very least that Autism is within the capability of a decently trained psychologist to evaluate, indeed at a practical level you don’t even need that prior qualification (other than as a socially constructed gateway) to train in the current diagnostic schedules, lay people could easily do it.

Dyslexia and other specific learning difficulties (to use the conventional terminology whether I approve of it or not) have long been the domain of suitably qualified education psychologists to evaluate, Autism isn’t any more complex, and if you say it is, well you know if you identify in the course of the process something that needs another specialty then of course you refer to it, just like an optometrist who comes across glaucoma or macular degeneration in their practice.

I am writing this because of what I know about processes going on in the NAS at the moment, and I want to be both a catalyst and a part of this change. I am hoping if I am given the cold shoulder, that you will all be behind me when I come back from the ropes for another round of boxing.

Watch this space folks, Dr Larry is back in the blogging business.

Twenty years ago today (12th July)

This is a significant day, as this is the twentieth anniversary of my mums passing, and rarely does a day pass when I do not think of her, but she is a long way away now.

I look with regret at a world that seems to be going backwards, as so many of the rights she fought for are being disregarded by Governments obsessed with penny pinching austerity and to heck with the lives of the people who depend upon them acting with equanimity on matters of equality instead of rushing ahead with knee jerk policies without a proper audit of the consequences.

Still what does it all mean to me, I am a changed person, I have not abandoned the fight but I have done something neither of us would have dreamed of back in the day, that is I got my doctorate, and I earned it with a piece of research that fully recognised the participants as my equals.

My mum I hope is not only alive in my memories, but in my activities, seeing through my eyes as history gives way. I wanted to do right by her, not knowing what I meant by that phrase, and I think I have. She was only a couple of years older than I am now when she passed, and she was beginning to engage that academic world I since took on, in delivering a lecture to a group of masters students at Warwick University. I was not allowed to listen to that, but I prepared the slides for her. Back then it was transparancies. 

Here is the text of one of them:

Discrimination then, is any act which diminishes a person’s status, rights to do anything, or go anywhere which would be normal for a person in similar circumstances without the impediment of: disability, race, religion, gender, sexual orientation or class, which are cause of prejudice.

She was ahead of the game in the intersectionality of rights, and I wish she had have had time enough to follow the academic path I have.

Tell me not, in mournful numbers,

Life is but an empty dream!-

For, the soul is dead that slumbers,

And things are not what they seem.

Life is real! Life is earnest!

And the grave is not its goal;

Dust thou art, to dust returnest,

Was not spoken of the soul.

Not enjoyment, and not sorrow,

Is our destined end or way;

But to act, that each to-morrow

Find us farther than to-day.

Art is long, and Time is fleeting,

And our hearts, though stout and brave,

Still, like muffled drums, are beating

Funeral marches to the grave.

               

In the world's broad field of battle,

In the bivouac of Life,

Be not like dumb, driven cattle!

Be a hero in the strife!

Trust no Future, howe'er pleasant!

'Let the dead Past bury its dead!

Act, - act in the living Present!

Heart within, and God o'erhead

Lives of great men all remind us

We can make our lives sublime,

And, departing, leave behind us

Footprints on, the sands of time;

Footprints, that perhaps another,

Sailing o'er life's solemn main,

A forlorn and shipwrecked brother,

Seeing, shall take heart again.

Let us, then, be up and doing,

With a heart for any fate;

Still achieving, still pursuing,

Learn to labor and to wait.

Henry Wadsworth Longfellow

Latter day musings on being part of the community

I have always tried to be engaged in the community, even though this seems to be something that runs against the natural inclinations of an autistic person who finds engaging in social relationships somewhat difficult, but I have an over riding sense of moral responsibility, which I have to say I do not always enjoy.

After my mum died, I continued my involvement in those organisations and causes that were dear to her, albeit not everyone agreed that I should be her natural successor, and indeed I lacked many of the qualities she had.

Closer to home though, in my local area, I did engage very much with local health issues and tenancy issues, but over time I moved on to other things more related to autism, and I think that left a gap.

In my latter days I have become involved locally again, being chair of the allotment association, and also the local ward labour party, not because I particularly enjoy doing either, but because I could see that somebody needed to do these things as I don't think anybody ever comes to choice and most want to avoid the role.

There are aspects I enjoy, I did enjoy campaigning for Labour during the recent Mayoral, and General Elections, and yes there is comradeship amongst campaigners. The allotments are more difficult though, it has been very tough having chaired two very different committees and not necessarily sharing the opinions of those who are more eager to have a water supply at any cost than others. It is difficult being neutral and I can't say I have always been a success.

The worst of it all is that it takes up my time when I would rather be doing other things, and the same with the NAS, as although initially it was good to have an excuse to go down to London with someone else paying my train fare, it is not much fun now as I have never been very good at claiming my expenses and inevitably end up funding more of it myself than I need to because I do not have the MP's expertise in filling out claims forms and inventing expenses.

Another of my more recent involvements has been with the National Autism Project which was always going to be controversial, that has meant additional journeys down to London which for the record, I do not find travelling by Virgin Trains even when I reserve a seat, comfortable to do or without anxiety. It has not been plain sailing either, and it was touch and go whether all of us would remain on board for the Autism Dividend report, but we did, and perhaps the greatest personal highlight for me was speaking at a House of Lords reception, as the last speaker, after the Minister for Social Responsibility who was doing the usual politicking, and the challenge for me was remaining polite, but I did. Marcus my brother on seeing the pictures said I looked like Fidel Castro!

Well now the election is out of the way I hope I can spend a bit more time pushing that particular cause through my political networking.

Oh well Autscape creeping up on me, and this time I shall neither be staying on site or locally, I expect I shall be travelling down each day. It is also the first time ever when I made a proposal for a presentation that was turned down. Not that I mind too much, it will be a full schedule of presentations and it is less for me to worry about.