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Autism supplement in yesterdays Independent

31 Mar

An interesting supplement with contributions from Jane Asher amongst others. Download as a PDF right here.

David Cameron intends to cripple those with disabilities

3 Mar

Today I received an email from NAS stating:

The Government has announced a one billion pound cut to Disability Living Allowance (DLA). Next week in parliament, MPs will debate plans for a new system which could make it much harder for adults with autism to claim DLA…

For those not in the know DLA is a state benefit given to children (or their parents depending on age) and adults who have an established need based on circumstances arising from their disability. For example, my child receives DLA because xe cannot care for xyrself and needs extra help that must be accounted for. It is not a huge amount of money but for people with a disability, every single penny counts.

NAS’ email continued:

We need you to ask your MP to help protect this crucial benefit for people with autism.

Please also visit the NAS Who Benefits page to actively support the initiative and make David Cameron’s coalition led gvmt wake up to the reality that for autistic adults, DLA is a lifeline to not just personal independence but also simple everyday living.

Young Autistic and Stage Struck

8 Apr

Channel 4 in the UK has this show: Young Autistic and Stage Struck. I have to see if I can download it from iTunes, as it looks like it may be very cool.

This landmark series follows nine autistic youngsters as they attempt to produce their very own stage show, under the guidance of theatre professionals who’ve never worked with an autistic cast before

The synopsis for Episode 1 looks good:

The first episode of the series introduces the first five youngsters. Twelve-year-old Ben has high functioning autism: he’s exceptionally bright but experiences acute loneliness. But as the project develops he starts to bond successfully with the other youngsters.

Andrew, 17, is classically autistic, and despite limited social skills, he is very keen to have his first proper relationship with a girl. From day one he starts getting closer to Claire, 19, and takes her on the first date of his life: a night at the cinema. Claire is a talented singer and pianist who also struggles socially.

Mollie, 11, is prone to tantrums and lengthy sulks, which test her mother’s considerable patience. She suffers from PDA – Pathological Demand Avoidance – a pervasive developmental disorder with symptoms including mood swings, language delay and obsessive behaviour. A talented singer, Mollie was diagnosed with autism at four.

Eleven-year-old Jozsef is more challenged by his autism, but his playfulness makes him endearing to others and soon turns him into the group joker.

Basically, it looks like a reality show where they recruit a group of autistic kids, working with the National Autistic Society, and together with Lyric Hammersmith help the kids workshop a show.

What a cool idea.

Polly Tommey poses as advocate for autistic adults

7 Apr

Polly Tommey is in the news again with this piece in the Guardian, Attention-grabbing antics for autism. It concerns her latest poster campaign, timed to coincide with the start of the General Election.
Hello boys polle tommey poster

I have left the following comment.

I have followed Ms Tommey’s attempts to present herself as a mainstream autism advocate for some time now on my blog, Action for Autism, and your headline,”Attention Grabbing Antics” is apt. If Ms Tommey wants us “to move away from the discussion about vaccines because she knows how divisive it is” she could make a start by removing her current Face Book campaign, “Mothers Supporting Andrew Wakefield’s Work.”

Ms Tommey complains about “bickering.” But other organizations have no problem working together. The Autism Act came about with the support of 15 autism organizations working together. Many of their members served on the External Reference Group for the Autism Adult Strategy for England which reported to the government. They mobilized their members to submit over a thousand responses to help shape government strategy. This will be reflected in the statutory guidance that will be published later this year. Ms Tommey’s contribution to all this was nil.

She states that “we haven’t a clue what to do with adults with autism.” That is because she and her supporters have spent the last 10 years arguing that autism is a biomedical disorder of childhood that is treatable with the untested and unproven interventions marketed by her husband. The National Autistic Society has taken a different stance with its Don’t write Me Off campaign Most of us are not interested in what to do with autistic adults. But we we are trying to find out what we can do for them and what they want for themselves.

Political abuse and the abuse of autism

5 Nov

“Political autism” has emerged again in a row within the European Union (EU). Despite taking Britain into the EEC (the forerunner of the EU) in 1973, the Conservatives have always been vulnerable to disputes between their pro-European wing and the euro-sceptics who are mistrustful of European federalism and keen to defend British independence. The Labour Party has comparable factions within its ranks.

Thus political leaders of both the main parties have always had to perform a tricky manoeuvre, demonstrating their European credentials to a business community that knows where its markets lie and appealing to an electorate, many of whom prefer to blame faceless European bureaucrats for all our ills. This has led to an inconsistent approach that causes exasperation amongst some of our European partners.

This came to a head again this week over the lack of commitment by the Conservative Party leadership to the European Union. According to the Guardian

Pierre Lellouche, France’s Europe minister, described as “pathetic” the Tories’ EU plans announced today, warning they would not succeed “for a minute”.

Giving vent to frustration across the EU, which has so far only been expressed in private, Lellouche – who said he was reflecting Nicolas Sarkozy’s “sadness and regret” – accused William Hague, the shadow foreign secretary, of a “bizarre autism” in their discussions.

He said: “They have one line and they just repeat one line. It is a very bizarre sense of autism.”

This is not the first time autism has been used as a term of abuse in politics. But the National Autistic Society launched an immediate complaint

Autism (including Asperger syndrome) is a serious, lifelong and disabling condition. Comments such as those attributed to Pierre Lellouche, France’s Europe Minister, in which he seemingly suggests the Conservative Party, and in particular, William Hague, demonstrate a bizarre sense of autism are therefore extremely unhelpful.
To use the terms ‘autism’ and ‘autistic’ in a derogatory or flippant manner can cause deep distress and hurt to people affected by the condition. The National Autistic Society (NAS) is keen to address this issue, in order that these terms are not used lightly, particularly by commentators or people in positions of power or influence.
Autism is much more common than most people think and affects over half a million people in the UK. To use the terms as a criticism, for dramatic effect or to try and gain political advantage only perpetuates the confusion and misunderstanding which people with autism have to cope with everyday. This is simply unacceptable and must stop.

Today’s Times ran with the story of Monsieur Lellouche’s apology.

France’s Europe Minister has expressed his deep regret at causing offence by calling the Conservative Party “autistic”, but also blamed a mis-translation for the furore today.

Pierre Lellouche said that he was voicing his real concern about the Tories’ Eurosceptic slide under David Cameron when he reproached the party for “a very bizarre sense of autism” in an interview with The Guardian.

He also called their hostility to the European Union “pathetic” and said that the party’s policies in the European Parliament had “castrated” them. Aside from the political row, the remarks were condemned by autism advocacy groups.

However, although the minister said today his remarks were “clumsy”, he claimed that the term, which is colloquially used in French to refer to a stubborn person who does not listen, is a common term of political abuse in France.

Leaving politics aside, this derogatory use of autism reflects some very primitive and harmful ideas that still hold sway in France. Two years ago I wrote about an abusive “treatment” known as “packing” that is still going on today

“A French treatment for autistic children with psychiatric problems which involves wrapping the patient in cold, wet sheets from head to foot is undergoing a clinical trial for the first time, which critics hope will see an end to the controversial practice.

The treatment, known as “packing”, involves wrapping a child in wet, refrigerated sheets in order to produce a feeling of bodily limitation and holding, before psychiatrically trained staff talk to the child about their feelings. Critics have called the procedure cruel, unproven and potentially dangerous, but its proponents say they have seen results.”

This cruel treatment has been condemned by advocates for neurodiversity and proponents of biomedical cures alike. I have made my feelings regarding Lorene Amet’s position on vaccines and biomedical treatments perfectly clear here and, more recently, here. But I agree with her that Packing is barbaric.

It is time that the French medical and educational systems came to grips with the reality of today’s autism. Placing autistic children in hospitals, under psychiatric surveillance, refusing their inclusion in proper educational systems, refusing their access to medical examination
and treatments, violating their human rights and dignity, and even worse still allowing interventions such as “packing” to be conducted in hospital settings is unhelpful and has to be stopped.

According to the Times French autism organizations have welcomed the NAS response and are equally condemnatory of the casual use of autism as a term of political abuse in France.

French autism groups said that the affair demonstrated how offensive was the current use of the term in French public discourse.

Patrick Sadoun, a member of the Sesame Autism Association, said: “The English are right to be shocked. I congratulate a country that reacts to this. I am horrified that French politicians, at the slightest occasion, call one another autistic.”

While autism is an acceptable term of abuse autistic people continue to be the victims of unacceptable physical and psychological abuse.

This post is also available on Action for Autism.

Landmark autism law passed today

22 Oct

The Autism Bill passed its final stage in the House of Lords today to become England’s first ever disability-specific law. The National Autistic Society (NAS) heralded the new law as ‘groundbreaking’ and said health and social care services could now face legal action if they failed to provide support for people with the condition, which affects over half a million people in the UK. The Autism Bill started out as a Private Members’ Bill drafted by the NAS on behalf of a coalition of autism charities and was championed through Parliament by Conservative MP Cheryl Gillan. It has had support from all parties.

Mark Lever, chief executive of the NAS, said:

“Thousands of adults with autism told us they were experiencing serious mental health difficulties due to a lack of support. After a year of lobbying, this is the watershed moment they have been waiting for – this law could literally transform lives. It will add serious weight to the forthcoming adult autism strategy so now we’ll be keeping the pressure up on Government to make sure they get it right and deliver lasting change for people with this serious, lifelong and disabling condition.”

“I’d like to thank everyone for their support. It is extremely rare that a Private Members’ Bill goes on to become law, so this is a triumph for people with autism and their families. It’s a real testament to the overwhelming level of parliamentary support for this chronically excluded group. I hope it will make the crucial difference in their lives that people with autism need and deserve. We’d like to thank Cheryl Gillan MP and the thousands of autism campaigners, MPs and peers for their support – together we have made legal history.”

Once it receives Royal Assent the Bill will officially become the Autism Act. Under the new law the Government’s forthcoming adult autism strategy will be legally enforceable and must be published within the next six months. New responsibilities the NHS and local authorities will be expected to fulfil will include providing diagnostic services for adults with autism and better training for health and social care staff.

The NAS is also calling for the strategy to tackle the woeful number of people with autism in employment. New research for the charity’s Don’t Write Me Off campaign, launched last week, found that a third of people with autism – that’s over 100,000 – currently live without a job and worryingly without benefits.

The Autism Act was backed by

  • The National Autistic Society,
  • Wirral Autistic Society,
  • Autism Research Centre,
  • TreeHouse,
  • Hampshire Autistic Society,
  • Staffordshire Adults Autistic Society,
  • Research Autism,
  • Autism Anglia,
  • The Wessex Autistic Society,
  • Autism Education Trust,
  • Autism Speaks,
  • Autism West Midlands,
  • Autism in Mind,
  • Autism Initiatives,
  • Sussex Autistic Community Trust
  • Tyne and Wear Autistic Society.

I hope everyone will join with me in congratulating the NAS and their partner organizations and all their supporters who have campaigned and lobbied to make this possible.

Don’t Write Me Off

13 Oct

This is the slogan of the latest campaign from the National Autistic Society. It launched today at a reception in Parliament where over100 MPs heard NAS Council member Thomas Madar talk about his experience as an autistic adult and saw the latest campaign video.

The campaign addresses the lack of support adults with autism face when looking for a job or trying to access benefits. New NAS research has revealed that, of the adults with autism we surveyed:

· One third are currently without a job or access to benefits

· Over half have spent time with neither a job nor access to benefits, some for over ten years

· Just 15% have a full-time job

· 79% of those on Incapacity Benefit want to work

· 82% who have applied for benefits say that they needed support to apply.

As with previous campaigns these statistics will be brought to life with the personal stories of adults and parents directly affected by these issues. For news, resources and to take part in the campaign visit the campaign website