Action For Autism

Genevieve Edmonds

This is sad and shocking news. Genevieve did so much to help the autistic community. It just seems so wrong that she could not find the help she needed. My heart goes out to her family, to her partner and co-author, Dean Worton, and to all who knew her.

The Autistic Community mourns the death of Genevieve Edmonds

Washington, DC - 2/18/08 – The autistic community mourned the loss of Genevieve Edmonds, a UK-based advocate and author on the autism spectrum who committed suicide this past week. Genevieve was a leader in advocating for increased visibility and support for adults on the autism spectrum. She authored four books: The Asperger Social Guide: How to Relate to Anyone in any Social Situation as an Adult with Asperger’s Syndrome, The Asperger Personal Guide: Raising Self-Esteem and Making the Most of Yourself as a Adult with Asperger’s Syndrome, Asperger Syndrome And Employment: Adults Speak Out About Asperger Syndrome and A Self-Determined Future with Asperger Syndrome. Her work with the ASPECT group at Sheffield Hallam University resulted in numerous strides forward in autistic representation and a comprehensive study on the needs of adults with Asperger’s Syndrome in the United Kingdom.Genevieve will be remembered for her contributions to our community and commitment to improving the lives of individuals on the autism spectrum. Her death is a tragedy and we mourn the loss of one of our own. Those wishing to express their condolensces to the Edmonds family can direct their thoughts to http://www.blackpooltiggers.co.uk/contact.pl

Ari Ne’eman
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org

Alex Plank
Wrong Planet
http://www.wrongplanet.net/
alex@wrongplanet.net

February 23rd, 2008 Posted by Mike | aspergers | 10 comments

Communication, Respect and Autism

 Thoughtful Debate

The latest issue of Communication, the quarterly members magazine of the National Autistic Society continues to provide provocative and thoughtful contributions to the debates that feature so often in the autism movement.

We have Pat Howlin on the question of whether we need to differentiate between the condition of being autistic, which requires respect and understanding, and autistic spectrum disorders which require interventions. And she argues that these are not mutually exclusive categories. Lorna Wing discusses the need for a well thought out ethical framework within which genetic research can be conducted. Given that genetic research into causes and possible cures is going to continue anyway she wants it to happen within an ethical framework that respects the human rights of autistic people.

There are also features on siblings, home education and the experience of classroom assistants supporting autistic pupils in the mainstream.

Larry Arnold writes about his experience as the first ever autistic person to be elected to the NAS board of trustees. He writes about the need for the NAS to continue “to be an organization for the entire spectrum of autism” and reminds us that “newer organizations formed under the umbrella of neurodiversity and ‘aspie freedom’ … also need to be inclusive and work to include people who are not as intellectually advanced as they are.” And , as if to underline the point, there is also a feature on challenging behaviours. These are by no means the exclusive domain of so called ‘low functioning’ autistics. But for many families they define the experience of autism and seem to mark their children as different from the higher functioning autistics whose concern for acceptance and understanding is sometimes mistaken as indifference to the real suffering that can come with autism. This takes us back to Pat Howlin’s article on reframing our attitude both to autism and to autistic people. All in all a very stimulating issue which will provide me with plenty of material for future blog posts.

This shows that a national autism charity can make a serious attempt to embrace diversity and continue to address the problems that arise across the autistic spectrum. It will not always be plain sailing. With such a diverse constituency there are bound to be times when some groups will feel neglected or misrepresented. The current “Think Differently” campaign created a small storm amongst some parents that received extensive coverage in the Independent.

Some autistic adults were also put out when the same campaign referred to the “devastating effect on individuals and families” if the right support was not forthcoming. They feel that most people will miss the subtle distinction between this and the routine references to autism as “this devastating condition” by the epidemic mongers.  

Thoughtless and debasing

What is certain is that nobody could miss the subtle message of this ad campaign, because there is none. Having just watched The Golden Compass I am reminded of the Gobblers who kidnap children in order to steal their souls.

This is not the latest offerng from Safe Minds or Generation Rescue. This is the New York University Child Care Center. And they do a similar job on ADHD, Asperger Syndrome and Bulimia. Whose Planet is it Anyway? and Autism Vox have both written thoughtful blogs about this campaign. The NAS takes respect for autistic people as its starting point. It will make mistakes. But it is unlikely to stoop to the level of misinformation and abuse that is apparently acceptable to New York University.

December 7th, 2007 Posted by Mike | Autism, Communication, National Autistic Society, Neurodiversity, aspergers, parents | 8 comments

Autism Education Trust

The National Autistic Society website proudly proclaims that they are now hosting the Autism Education Trust.

The National Autistic Society is delighted to host the Autism Education Trust and welcomes the opportunity to work in partnership with colleagues across the sector. The trust will play an important role in sharing best practice, influencing decision makers, developing high quality support for early years and school staff and involving children with autism and their families in shaping provision.

So far so good.

The Autism Education Trust (AET) is a new organisation established with funding from the Department for Children, Schools and Families. It is dedicated to coordinating and improving education support for all children with autism  in England.

About the AET
The aim of the Autism Education Trust is to create a platform for voluntary, independent and statutory providers to plan and develop appropriate autism education provision across all education settings, including early years.

This is excellent news. I went straight over to the Department for Children, Schools and Families to get some more information … and found no mention at all of the Autism Education Trust. So back to the NAS website to learn that the Department for Children, Schools and Families has only made an initial commitment to fund this for one year. It is actually an initiative of the The National Autistic Society, TreeHouse  and The Council for Disabled Children.

The best estimates available to the UK government indicate that perhaps 1% of school children are on the autistic spectrum. Is it me or should the government be making a  more long term commitment to financing this initiative?

Never mind, the money is there for now and full marks to the voluntary sector for taking the initiative and persuading the government to provide some backing. The question is, “How can we make the best use of this opportunity?” I suggest that people contact Judith Kerem, the project manager <info@autismeducationtrust.org.uk> if they have anything to offer to this project.

November 18th, 2007 Posted by Mike | Autism, National Autistic Society, aspergers, education, government | 2 comments

Think differently about autism

Today the National Autistic Society launches its “think differently” campaign. We want to spread the word that autism need not be so devastating and disabling if only  people would take the time to understand it and make the effort to adapt our schools and workplaces and public spaces to make them autism friendly.

To that end we have launched a website http://www.think-differently.org.uk/ and established a presence on MySpace and Facebook.

Download the campaign pack and join us. And check out yesterday’s article in the Observer for some useful background information. And for some grim reading about why we need to think differently read yesterday’s blog that features a Sunday  Times article on the truly awful Judge Rotenberg Center in America.

October 29th, 2007 Posted by Mike | Autism, National Autistic Society, aspergers | 7 comments

shades of grey on the autistic spectrum.

The discussion at the Guardian on curing autism that I blogged yesterday threw up the old chestnut that we have a severe form of autism where children are non-verbal, prone to self injury and violent tantrums and not even toilet trained. On the other hand we have a mild form, known as Asperger Syndrome, where quirky individuals struggle with social skills but are basically OK. Unlike the severely autistic kids, they don’t need a cure. But because they don’t need it they want to deny it to the kids who do need it.

This argument assumes that we have this clearcut break between the two forms of autism. It also asumes a worse case scenario for all those with severe autism and that life is a peach for the mildly affected asperger types. Reality is, of course, somewhat different. For a start autism is a spectrum disorder. It exists on a continuum with no clear cut dividing lines. Secondly, it is dimensional rather than categorical. People of a certain age [over 50s like myself] will remember the old stereograms with a simple bass/treble control. It was either/or. Then we got music centres with graphic equalizers where you could independently manipulate half a dozen individual variables. This serves as an analogy for autism. Once upon a time we thought it was either/or. Now we know it is a lot more complicated than that.

I get to see this all the time. I teach in one of the five designated special schools in my county. Our special schools are for childen who used to be described as retarded but are now described as having severe and/or complex learning difficulties. Many of them are also autistic. Since September 2004 I have had 43 children in my class. Out of 43 pupils 18 are autistic. My county has a very parsimonious record for funding out of county residential placements; 10 children at the last count. So it is safe to assume that my class records account for most, if not all, of the severely autistic 11 and 12 year olds with learning difficulties in my school’s catchment area.

So what do these guys look like? I did a quick survey, dividing them up into autistic [ASD] and non-autistic [NT]. then I counted up 5 categories of behaviour.

1. toileting
2. language
3. behaviour
4. self injury
5. none

Some children feature in more than one category. Those in ‘5. none’ still have severe cognitive impairments.

Three things strike me from this highly anecdotal ‘research’ of mine.

1. The behavioural markers that come up so often in popular debate; toileting, speech, tantrums and self injury; are not more prevalent in autistic children than they are in other children with cognitive impairments. [And, curiously, these popular criteria for autism are not the same as the official criteria of DSM-IV and ICD-10.]
2. A significant minority of kids with ASD and almost half of the kids without autism had no severe problems in the four areas of toileting, speech, behaviour and self injury.
3. Something that is not obvious from the chart, but some of the most challenging pupils in behavioural terms were also  amongst the least impaired in other areas.

OK. This was a small sample and lacked a control group. If I had done this 5 years ago there would have been more self injury amongst the autistics and less with good languge skills. But I stand by my belief that the negative outcomes that are so vigorously promoted as an inevitable adjunct of autism are just as likely to be related to level of cognitive functioning. Even then, they are are not typical of either autism or of severe mental retardation. There are shades of grey on the autistic spectrum.

Autism … it’s not what you think

September 17th, 2007 Posted by Mike | Autism, aspergers, science | 11 comments

Piers Bolduc on You and Yours

 This letter was forwarded to the Asperger UK group today with permission of Cris Bolduc, mother of Piers Bolduc.  I urge anyone with access to BBC Radio 4 to listen to You and Yours tomorrow. Piers was misdiagnosed as mentally ill  and placed on powerful antipsychotic drugs. When he wounded a man while on medication he was sectioned and sent to Broadmoor, the top security prison for the criminally insane, which contains serial killers, mass murderers and sex offenders.  While there he was diagnosed with Asperger Syndrome. The Daily Telegraph campaigned for his release and in 2004 he was transferred to the Hayes Unit, the only secure unit specifically run for people with Aspergers Syndrome.

BBC RADIO 4 ‘YOU & YOURS’ this Thursday, 13th September 2007 at 12.04 mid-day.If all goes according to plan the programme we have recorded with the
BBC, on various occassions and locations since May, will be aired
THIS Thursday 13th September on RADIO 4 ‘YOU & YOURS’ at 12.04. Its
all about lack of care/units for adults with Asperger Syndrome and hi-
lites our son Piers’ tragic case.
Apologies in advance if its re-scheduled for sometime the following
week but that is the way it goes in the media! As I write it is still
on course for this Thursday. Although a great deal of recordings were
made, after editing it will be cut down to size so don’t blink or go
and make a coffee or you might miss it! I just feel that ‘every
little helps’ (to borrow a phrase!) not only for us and Piers but
other families struggling within the minefields of flawed placements
and the postal code lottery of accessing support and services.
You should be able to ‘listen again’ by putting: You & Yours listen
again, into your computer’s Google search a few days after it is
aired.
Please excuse the Round Robin but it is the quickest way to alert
everyone!
AllBestCris

Here is the article that celebrated his release from Broadmoor 3 years ago.

Asperger’s man is released from Broadmoor

By Daniel Foggo

Last Updated: 7:40pm BST 07/08/2004

September 12th, 2007 Posted by Mike | Autism rights, aspergers, mental health | 11 comments

‘It is not a disease, it is a way of life’

This article is in today’s Guardian.

It provides a useful introduction to the positions of some of the supporters of autism acceptance, including myself and fellow bloggers Kev Leitch and Larry Arnold.

The article begins:

Today, an event run by and for autistic people kicks off in Somerset, the latest act of a burgeoning autism rights movement. Emine Saner reports on the campaign to celebrate difference, rather than cure it.

It contains some really good insights from the people she interviewed. For example, Gareth Nelson (pictured above) of Aspies for Freedom says:

I don’t think you should cure something that isn’t purely negative, It’s the same as black people, who seem to be more at risk of sickle cell disease than white people but you’re not going to attempt to cure ‘blackness’ to cure sickle cell.

The only unfortunate thing about the article is that it does play up the role of Aspies for Freedom (AFF) at the expense of other initiatives. I was surprised to read that:

Nelson, with his wife Amy, who also has AS, is leading the UK’s autism rights movement.

And I am not convinced that AFF has 20000 members when the discussion forum on their webite has less than 6000 members and many of those are from overseas. This is unfortunate as one of the strengths of the emergent movement for autism rights and acceptance for autistic people is that there are many voices and all are free to explore important differences as well as points of agreement. As an example, Larry Arnold and I work together within the structures of the NAS and are in broad agreement on many issues. But we differ sharply in our attitude to the role of scientific research in autism.

I would also have liked to read more about Autscape. This event is unique in Europe. It takes its inspiration from a similar event in America called Autreat. Like the AFF, Autscape began three years ago but it makes no leadership claims. Instead it aims to:

• Serve as a haven created by autistic people. An autistic space.
• Provide a venue where the majority of speakers will be autistic.
• Create possibilities within the conference for autistic people to communicate and socialise with other autistic people on their own terms.
• Educate and inform on issues arising from within the autistic community.
• Advocacy and self-advocacy.
• Promote acceptance of autistic people in their own environments.
• Enhance the lives of autistic people through empowerment, advocacy, and a nice relaxing time.

But these minor criticisms should not detract from a very valuable article in which the author shows respect for autistic people and accurately reports their views.

August 7th, 2007 Posted by Mike | Autism, Autism rights, Neurodiversity, aspergers, autism acceptance, disability rights | 36 comments

Who is to blame for our son’s death?

http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2007/07/30/hasper130.xml&page=1

This story is so sad and so avoidable. My son is not so different from Tim Whattler. He is doing OK at the moment.  But this was not always the case. We are not so different from Tim’s parents. We fought similar battles on our son’s behalf. Often we lost. We couldn’t understand it either.

We are lucky. Our son has survived. But it should not be about luck. Tim’s death is a waste; such a loss. It is not a tragedy. It is a crime, though I doubt there will ever be a guilty verdict.

July 30th, 2007 Posted by Mike | Autism, aspergers, mental health, parents, psychiatry, suicide | 16 comments