Autism Bill Progresses in Parliament.

This post first appeared on LBRB May 28, 2009

A few weeks ago I attended the Northern Regional Forum of the National Autistic Society. The general feeling was that all those working around the private member’s bill on Autism then before Parliament had done a fantastic job. The government was talking to us and, more importantly, listening to us. The Bill of course would never become law but we could expect signficant concessions from the government in exchange for the Bill being dropped.

Instead the government proposed to delete the existing clauses in th eBill and replace them with amendments of its own covering

• Transition Planning
• Diagnosis
• Identification and Assessment
• Provision of Services
• Training of Professionals
• Local Authority/PCT Leadership

These amendments were acceptable to the Bill’s supporters and it will now progress through Parliament with government support. It is thus more closely focused on adult proivision. Provisions relating to children, including diagnosis, data collection and planning services will be enacted via regulations and guidance issued by the government a part of its Children and Young People’s Plan.

There is still a lot of work to be done. The government consultation that I wrote about last month is continuing and it is even more important now for people to respond.

Meanwhile, another private member’s bill from John Bercow on special educational needs that only came 19th out of 20 in a poll of MPs has failed to become law but the government has given assurances that it is making progress on meeting the commitments outlined in the Bill. The NAs was again involved in drafting the Bill and lobbying for its support.

the National Autism Society, which had worked with Bercow on the Bill, said it was satisfied that the Bill had achieved some success.

NAS policy manager Beth Reid said: “This Bill has helped to raise the profile of many important issues facing SEN children. It has put increased focus on making sure the right measures are in place to ensure they are support properly.”

However, Reid said more work was needed to bring down the high number of SEN children [whch contains a disproportionate number of autistic children] excluded from school, something Bercow’s Bill had sought to address.

This is important work. These are not grandiose schemes for combating autism, defeating autism or ramping up research efforts into possible causes and cures. But they are honest attempts to improve the lives of autistic children and adults. The NAS and its allies will continue to monitor the government response to ensure that its deeds do in fact match up to the commitments it has made in response to our campaigning.

July 13th, 2009 Posted by Mike | LeftBrainRightBrain, National Autistic Society, adults, campaigns, politics | no comments

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