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:
- The change.org petition which has been at the heart of the campaign
- And this piece on autisticadvocacy.org celebrating the final outcome.