Various bits of autism related stuff, including an account of a talk by Mel Bruce for NAS West Norfolk, and some photographs.
Last night I attended a talk given by Dr Mel Bruce, a clinical psychologist at Starfish Plus. There are also a few other things I will be covering in this post.
MEL BRUCE TALK
The talk was scheduled to run from 7-9PM, and I was required to be there (the scout hut on Beulah Street, as so often for NAS West Norfolk events) early to help with the setup. Mel opened proceedings with a brief account of what she and her team do, and who they work with, before taking questions from the floor. One of the things Mel mentioned when talking about communication was the use of a system of communication cards, which would work rather as the coloured badges at AutismCon did – in that case red was for “don’t talk to me unless it is an emergency”, yellow for “don’t initiate conversations but you can respond if I talk to you” and green for “I am happy to talk”, with freedom to change according to how you are feeling at any given moment (I selected a green badge and stuck with it the whole day as it happens). A great quote which showed how involved she is with the autistic community “Don’t do anything about us without us”. Another excellent point she made was about referring to special interests rather than obsessions.
Although this talk did not deal with issues that relate directly to me, because it was aimed at parents of autistic children, and therefore I maintained a purely listening brief, I enjoyed the evening, and am looking forward to meeting Mel again at the Positive Autism Awareness Conference NAS West Norfolk are holding at the Duke’s Head Hotel, King’s Lynn on April 15th. Meantime, we have connected on twitter.
A POTENTIAL MEETING WITH SIR HENRY BELLINGHAM MP
Just a brief mention of the fact that following a very unsatisfactory response by Sir Henry Bellingham on the subject of the cut to ESA, in which he claimed to be talking to lots of local groups moves are afoot to organize a meeting between ourselves and him. Further information about his record as an MP can be found here (warning – it makes grim reading).
This section is here because it was recently brought to my attention that there are still problems with doctors being unwilling to diagnose autistic spectrum conditions (ASC for short) and in some cases unwilling to refer people for diagnosis. In the nine and a half years since I was diagnosed (25 years later than I should have been but that is another story) my life has improved hugely in all sorts of ways.
My message to doctors faced with people seeking a diagnosis of an autistic spectrum is this: if you feel unable to do this yourself, then refer the patient to someone who can. To point blank refuse even to refer someone is unacceptable and indefensible.
HELPING THE NATIONAL AUTISTIC SOCIETY WITH A PUBLICITY CAMPAIGN
The National Autistic Society are running a Public Awareness Campaign, to which I am pleased to say I have been able to contribute. In answering the questions I was sent as part of this I referred on many occasions to things that happened before I was diagnosed, precisely because (see above), things have been so much better since I was diagnosed.
A VICTORY – #JUSTICEFORKAYLEB
Yes – a good news story to end the text section of this post. Kayleb Moon-Robinson, a 6th grade student with autism, was facing life with a conviction for a felony offence. Following a prolonged campaign, all charges against him have been dismissed. More details are available as follows:
This an account of my day at AutismCon. It also includes pictures of every page of the program for that event, and brief snippets about my journeys each way.
Yesterday was the day of AutismCon, an event organised under the aegis of the National Autistic Society (NAS). The actual organizing of the event was done by a committee of five, The AutismCon Committee, while the NAS’s Senior Events Officer Elly sent out emails to everyone who booked in advance so we all knew what to expect.
With the registration desk opening at 10 o’clock, I decided to get the train that leaves King’s Lynn just before 8AM. Not knowing for sure how long the ticket purchase would take I left my flat at 7:15AM to eliminate any chance of mishap (therefore, in accordance with Sutcliffe’s First Law of Travelling by Public Transport, there were no problems and I was seated on the train nearly half an hour before it was due to depart), having had time to photograph a 2016 London Underground map on the platform.
Apart from the fact that a mob of Spurs fans chose to sit in the same area where I was already seated and maintained a constant racket all the way to Cambridge, where thankfully they changed trains in preference to travelling into London and out again (I should point out this train departed on schedule at 7:54AM and several of this group had already cracked open lagers by then), the journey was thankfully uneventful.
Even fairly early on a Saturday morning King’s Cross was quite busy, so I was thankful that with the event being at Friends House I had only to head for the Euston Road and walk straight along it. This sculpture just outside the station is a new addition since my last trip to London…
Having covered the journey down, it is now time for the main course…
Registration took a little time, after which I consulted my program. To set the scene for the rest of the day, here is a close up of the schedule…
As you will find out later, I made one change to the plan indicated here. Having shown a close-up of the schedule, here is the entire program for your attention…
I took my seat in Light (the big room, now somewhat smaller in terms of seating area than it once was, but still with a massive capacity) for the introductory session. The biggest change since I was last there however is to the ceiling/ roof structure, from which the name derives..
The whole event was shunted back fifteen minutes due to the failings of British public transport (not enough people had been able to get to the event for the scheduled start time). The main purpose of the introductory session was to provide a few explanations about where things were. Also, due to the severe sensory issues of some of those in attendance, applause was very firmly banned (the alternative, already standard in international sign langiuage, is ‘jazz hands’).
SESSION ONE: SURVEY ROOM
My first session was in the “Do” stream, taking place in the Bloomsbury Suite and was titled ‘Survey room’. There was one written and one pictorial survey per person and one could choose either or both (I chose both, and attached my details to the written survey to enable further contact to be made should the NAS wish to). Once we had had time to complete the survey there was a discussion session which was very constructive, and then the session ended.
SESSION TWO: QUIZ AN MP
For me, it was back to Light for sessions two, which featured Labour MP for Bermondsey & Old Southwark Neil Coyle and Conservative Councillor Claire-Louise Leyland.
This was a very lively session, with many people from the audience using the question and answer part of it to express their hostility to the Tories (though nothing personal was aimed at Councillor Leyland, who after all had had the decency to show up for what she must have known what would be a tough session). As for why there was so much hostility to the Tories in that room, one general and two specific points can sum it up:
As Neil Coyle pointed out, in 2010 the UK was the international leader on disability equality whereas in 2015 the UK became the first country to be investigated by the UN for its treatment of disabled people.
The Tories introduced the bedroom tax.
The Tories have also just passed a cut to ESA for the third time, ignoring concerns from the Lords for a second time.
After the end of this session there was an hour’s break for lunch. I looked in at the Arts and Crafts session which I had initially intended going to but decided instead to head back to Light for the session on….
AUTISM AND SEXUALITY
This session was opened with speeches from Keran Bunker (an autistic gay man) and Marilyn Misandry (an autistic femme queer person talking about autism and drag) before being opened up to the floor…
One point that came up several times from the floor was that autistic people who wish to transition find their autism used as an excuse to deny them this wish. This provoked an attempted response from someone who works in a gender reassignment clinic, but he was quite rightly shut down by the chair – this was a day for autistic people and he had no right to attempt to over-ride their lived experiences with his comments. At the end of this session I stayed seated because the next session I was attending was also in his room, being the one session that felt I absolutely could not miss…
AUTISM AND EMPLOYMENT
This session featured John Wilson, a former solicitor diagnosed with autism at the age of 50 (I met someone during the first session who was undiagnosed until the age of 61) and Kerry Bover, who has worked part-time at Clarks for 14 years and who also runs AutismCo.
There were many stories both good and bad told during this session. It was here that I heard about the restaurant owner who when faced with a group of customers who asked not to be served by an autistic waiter not only upheld the law of the land (it was John, the trained lawyer, who brought up this story, and his opinion as regards the law the I am using) by refusing to accede to this request and supporting his employee (just substitute ‘black’ for ‘autistic’ in the request by these customers to make the appallingness of their behaviour unmissably obvious) but then subsequently put up a facebook post instructing anyone whose attitudes were like those of this group of customers not to book places at his restaurant as if they made that request he would kick them out.
For music lovers there was to be a live performance from autistic singer/ songwriter Lauren Lovejoy (apparently she was a massive hit on X-Factor in 2013) immediately after the end of this session, but for me the end of the session was also the end of the event.
AN OVERVIEW OF THE EVENT
I think that the boldness and organisational skills needed to get 600 autistic adults together in one place should be complimented. Overall, the late start not withstanding, the event was superbly run. I for one thoroughly enjoyed the day and look forward to next year’s event.
THE HOMEWARD JOURNEY
The train back to King’s Lynn left platform 1 of Kings Cross at 17:44 (not the lowest numbered – in true thermodynamic style Kings Cross has a platform 0, which I arrived at this morning). Platform 1 has a very fine clock…
Having walked the length of the platform (the train splits at Cambridge, most of it terminating there while the front four coaches go on to Lynn) I took my seat for what was thankfully both a quiet and an uneventful journey back to Lynn. It was some twelve-and a half hours after leaving the flat that I arrived home.
POSTSCRIPT: POSITIVE AUTISMAWARENESS CONFERENCE
On April 15th NAS West Norfolk are holding a Positive Autism Awareness Conference at the Duke’s Head Hotel, King’s Lynn, for which we are sold out! After the experience of AutismCon in London I am even more enthused about this event at which I shall be displaying some of my photographs.