A better future for autistic adults

Following on from the National Autistic Society’s I Exist campaign and the massive support for the Autism Bill in Parliament the UK Government, after working closely with an external reference group chaired by NAS chief executive, Mark Lever, has launched a

consultation process for the first government strategy to support adults with autistic spectrum conditions (ASC) to live life as full and equal citizens.

The consultation documents can be accessed online at the Department of Health. At present the consultation documents are print only but should be available to complete online before the consultation period ends on September 15th. The consultation only applies to England. The Welsh Assembly Government already has a Strategic Action Plan for Autistic Spectrum Disorders (ASD), published in April 2008. An ASD Strategic Action Plan is being finalised for publication in Northern Ireland and in Scotland the ASD Reference Group has published guidance to local agencies on commissioning services for people with autism. While these separate arrangements may reflect local differences it will be interesting to compare them in order to see how adults are being served across the United Kingdom.

The government has outlined 5 areas of need: social inclusion, health, choice and control, awareness raising and training, and access to training and employment. The NAS has a broader range of concerns on its website which it would like people to consider when completing the government questionnaire.

So, after years of being ignored or ineligible, autistic adults are finally being considered and their views taken into account in formulating statutory guidance for local authorities. So spread the word and mke sure the government hears your views.

This post first appeared on LBRB April 29, 2009.

July 11th, 2009 Posted by Mike | LeftBrainRightBrain, National Autistic Society, adults, government | one comment

A moral framework for genetic testing

First posted on LBRB May 13, 2009
Today’s meeting of the Human Genetics Commission consultative panel was both informative and reassuring. Informative because some of the leading professionals gave of their time to brief us on three issues – screening children for genetic disorders, pre-conception genetic screening and pre-implantation genetic diagnosis. It was reasssuring because the Panel showed a good grasp of the issues and was very much aware of the ethical dilemmas that can arise and the need for guidelines. The HGC is keen to hear those concerns and see that they are included in representations to government agencies and law makers.

All this relates to autism indirectly but is beneficial because it suggests a favourable ethical climate in which to discuss future advances in genetic research into autism. Interestingly, one of the experts, who is closely involved in genetic testing did not believe we were going to see a genetic test for autism any time soon, if at all.

My only regret is that the nuanced discussion of complex moral issues that surround the daily advances in genetic science and medical technology are not reflected in media reports of this important topic – as Simon Baron-Cohen recently found to his cost and ours when he tried to initiate a public discussion of the issues.

Edit – I also regret the typos (now corrected) in my initial posting from Euston Station.

July 11th, 2009 Posted by Mike | LeftBrainRightBrain, ethics, genetic testing | no comments

Left Brain Right Brain

Of late I have been blogging on Left Brain right Brain (LBRB) the very popular site for autism news, science and opinion autism run by Kev Leitch. Kev managed to get LBRB listed on Google News, so putting topical stories there makes sense if you want to reach a wider audience. And I do. It also means less work for Kev to keep LBRB up near the top of Google News searches if he is getting a variety of articles from different authors instead of having to write it all himself.

Unfortunately some people are finding it difficult to comment on LBRB at the moment and Kev is too busy in his life away from the internet (Yes, he does have one!) to fix it right now. I would not even know where to begin to fix it even if I had access to that side of his site, which I do not. So I am going to start posting my articles here and on LBRB. That way lots of people get to read them and if the comment form on LBRB is not working for you, you can have your say over here. I will start by reposting my existing LBRB articles here.

July 11th, 2009 Posted by Mike | LeftBrainRightBrain | 6 comments

My Background

ACT NOW FOR AUTISM

United Kingdom Autism campaigners are working together to ACT NOW about the proposed benefit cuts and medical assessments. We have launched a petition which we intend to deliver personally to No 10 Downing Street. Please sign here and show your support.

I am Mike Stanton. I live and work in the UK where I teach children with severe learning difficulties, many of whom are autistic. My adult son is diagnosed with Asperger Syndrome. I am a member of the National Autistic Society. I speak and write on autism. My book, "Learning to Live with High Functioning Autism" is available in a Spanish translation, Convivir con el Autismo. I have also contributed a chapter to Asperger Syndrome in Adolescence edited by Liane Holliday Willey.

ACTION FOR AUTISM is a reaction against names like Action Against Autism and Defeat Autism Now! Names like these suggest to autistic people that we are against them as people. You may not mean that. But if you care about autism you ought to care about the feelings of autistic people and not use language that makes them angry or upset. If you disregard the feelings of autistic people do not be surprised if you are disregarded.