Category Archives: News

Letter from ASAN regarding “I am Autism”

Last week, Autism Speaks continued their pattern of exploitation of Autistic people and our families by releasing the video “I am Autism”, in which Autistic people are portrayed as stolen children and burdens on our families and on society. Contrary to some claims, Autism Speaks continues to promote the video on its website and through youtube. In addition, this is just a small part of a long history of problems with Autism Speaks.

 

Autism Speaks uses unethical fundraising tactics relying on fear and devaluing the lives of Autistic people: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. Autism as a fate worse than death is a consistent theme in Autism Speaks’ fundraising.

Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums returned to services, supports or educational initiatives that have a practical impact on the lives of Autistic people and our family members,  Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives. Furthermore, while the bulk of Autism Speaks’ budget goes towards research (65%), only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies available to Autistic adults and children.

Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions of our own, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the non-profit and disability communities.

Autism Speaks funds eugenics: A major portion of Autism Speaks research agenda is oriented around genetic research with eugenic implications. One of Autism Speaks major priorities is the identification of genetic biomarkers for the autism spectrum, thus allowing the prenatal identification and potential selective abortion of Autistic fetuses prior to birth. We are not opposed to genetic research and we take no position on the broader abortion issue, but we are deeply concerned about the potential for eugenics in Autism Speaks’ research. The refusal of the organization to consider the ethical, moral and social implications of what it funds is deeply concerning, particularly given the 92% rate of selective abortion for the developmental disability Down Syndrome. Rather than fund research and services that can help to improve the quality of life of Autistic adults and children, Autism Speaks funding is primarily directed towards preventing our very existences.

For these reasons and others, we assert that Autism Speaks does not speak for us. ASAN is organizing protests all over the country, with a successful one in Portland, Oregon having already occurred. If you’d like to participate in the protest, e-mail us at info@autisticadvocacy.org. Together, we can take action against an exploitative organization and reclaim our voice.

 

Thank you and, as always, Nothing About Us Without Us!


Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

 

 

 

 

Asperger teen takes State to court over education.

Disabled student takes state to court

Miki Perkins
December 31, 2008

A VICTORIAN teenager with multiple disabilities is suing the Education Department for discrimination, claiming it failed to provide him with a full-time education.

Alex Walker, 13, and his mother, Paige Walker, have launched legal action against the State of Victoria, claiming he was not allowed to attend school full-time, was banned from school excursions and forced to return home for lunch because funding was not available for a teaching aide.

They also say he was not allowed to travel on the school bus, forcing Mrs Walker to drive 400 kilometres each week to take her son to school.

Alex, who lives with his family in the west Victorian town of Branxholme, has a number of disabilities, including Asperger’s syndrome — an autism spectrum disorder — dyslexia and attention deficit disorder.

Access Law, acting for the family, will tell the Federal Court in February that at the age of five Alex had a “bright” IQ of 120, but this has now dropped below 100.

His mother said yesterday Alex had the spelling ability of a seven-year-old, wrote in a mixture of capital and lower-case letters, was far behind in maths and could only “skim read”. She claims discrimination has led to a drop in his IQ, frustration, anxiety and a loss of educational opportunities. “As for a social circle, he doesn’t really have one,” she said.

Because of his disabilities, particularly Asperger’s syndrome, which is characterised by difficulty in social interactions, Alex resorts to swearing when under stress. His mother said teachers unfamiliar with the disability could misconstrue this as bullying or controlling behaviour.

Anti-discrimination consultant Julie Phillips said there were many students similar to Alex who were refused full-time school attendance because of a lack of funds.

“Victoria has a long way to go in offering equal access to education for students with disabilities,” Ms Phillips said.

When Alex started primary school in 2001 at the Branxholme-Wallacedale Community School, the school failed to apply for funding from the Education Department for an aide, his mother said.

When Alex started secondary school in 2007, he was forced to move between an independent high school, distance education and home schooling because the department would not fund support for his full-time education, Mrs Walker said.

When he finally got funding, Alex was only able to go part-time to Baimbridge College, in Hamilton, and was not allowed to travel on the school bus.

Last year, the Government was ordered to pay more than $80,000 compensation to 16-year-old student Rebekah Turner, who has a severe language disorder and learning disability, when it was found that the Education Department had failed to provide classroom help for her.

The Government has since sought leave to appeal against the decision.

The department, which will contest Alex Walker’s allegations, said it would be inappropriate to comment while the matter was before the courts.

A spokesman said that since 1999, expenditure for students with additional learning needs had increased by 86 per cent.

This story was found at: http://www.theage.com.au/national/disabled-student-takes-state-to-court-20081230-77f2.html

Coroner’s findings on Asperger death

December 3, 2008 – 6:54PM

 

A South Australian Coroner has called for permanent accommodation to be set up for children with Asperger’s Syndrome, following an inquiry into the death of a teenager two years ago.

Rowan Wheaton, 18, hanged himself from a door knob in a temporary housing facility at Christies Beach, south of Adelaide, where he was placed after his parents had spent years pleading for help, State Coroner Mark Johns said in his findings released on Wednesday.

The inquiry heard Mr Wheaton was four-years-old when he was diagnosed with Asperger’s Syndrome – a neuro-development disorder that is sometimes considered to be part of what is called the autistic spectrum.

The disorder can cause sufferers to find it difficult to manage social interactions.

Mr Wheaton’s father gave evidence during the inquiry that his son had been a pleasant and agreeable young boy until problems started to develop in his teenage years.

When Mr Wheaton started to become violent, his parents sought help through the public health system, and on presenting at a number of emergency departments with police and ambulance officers, their son was discharged by clinicians who said there was nothing they could do.

In 2005, Mr Wheaton was detained under the Mental Health Act after he stabbed himself in the abdomen with a small knife, Coroner Johns said.

Disability Services later found accommodation for Mr Wheaton at the Beach House, in Christies Beach, with another young Asperger’s sufferer, whom he did not get along with.

In his findings, Coroner Johns said the Beach House model of accommodation “came too late in Mr Wheaton’s life to make a real difference” and that staff were not adequately trained.

He said the decision by one staff member to turn off an alarm on the morning of Mr Wheaton’s death so he would not be disturbed was a strong indicator of cultural deficiency at the Beach House.

Coroner Johns said it was impossible to build up long term experience amongst staff while there was an ad hoc arrangement for accommodation and that there was a need for South Australian Asperger’s sufferers in care to have permanent staff and permanent accommodation.

A copy of the Coroners findings are expected to be sent to the Commonwealth secretary for disabilities, Bill Shorten, for his consideration.

Media watch – watch your language AAP

Article from:  Australian Associated Press

AUSTRALIAN rockers The Vines have cancelled all their upcoming shows after the deterioration of singer Craig Nicholls’ mental condition.

Nicholls suffers from Asperger’s syndrome, a mild form of autism, which causes him to behave erratically.

The band has cancelled appearances at the Homebake, Pyramid Rock and Big Day Out festivals, as well as their upcoming Japanese tour.

“It is with a great deal of regret that The Vines today announced that they have cancelled all of their Australian festival appearances,” the band said in a statement.

“Craig Nicholls’ mental condition has deteriorated extremely rapidly over the past month to the point where he requires immediate help over an extended period of time.”

The Sydney four-piece formed in the late 1990s and found international success with their 2001 debut album Highly Evolved, which went top 10 in Australia and the UK.

The Vines fell from grace after their second album, Winning Days, failed to match expectations in 2004, and Nicholls’ erratic behaviour turned violent.

After abusing fans and assaulting a Sydney photographer, Nicholls was diagnosed with Asperger’s syndrome.

A two-year hiatus followed, before The Vines released their third album, Vision Valley, in 2006 and resumed touring.

Nicholls’ bandmates Hamish Rosser, Ryan Griffiths and Brad Heald sent their thanks to fans, friends and family who had supported them since their 2006 return.

“On behalf of The Vines we would like to extend our sincerest apologies to those of you who won’t be able to see us perform,” Rosser said.

“We are all absolutely devastated that we’ve been forced to cancel all upcoming shows as there’s nothing we love more than playing on stage before an enthusiastic audience.”

“The band and Craig’s family would like to ask that sensitivity be shown at a difficult time and ask that this statement be taken as their only comment on this matter,” The Vines said.

Autism Misdiagnosed? From the ABC.

Children misdiagnosed with autism

[This is the print version of story http://www.abc.net.au/pm/content/2008/s2418004.htm]

PM – Wednesday, 12 November , 2008  18:38:00

Reporter: Annie Guest

ASHLEY HALL: There’s been a worldwide rise in cases of autism spectrum disorder, yet the definitive cause and cure remain elusive.

Experts say diagnosis of the condition in Australia is patchy, because doctors here don’t apply the internationally accepted diagnostic criteria. Some patients are diagnosed as autistic when they don’t have the disorder, others with all the symptoms are turned away.

In Queensland today, there are fresh accusations that doctors are misdiagnosing children so they qualify for help in the classroom. But with a new Federal Government support package being rolled out, there’s fresh hope of a more uniform approach.

Annie Guest reports from Brisbane.

ANNIE GUEST: About 125,000 Australian children are known to have autism spectrum disorder. Many of their families describe stress, worry and hard work. They’re dealing with an array of symptoms that seem as complex as the terminology.

ANTHONY WARREN: Autism spectrum disorder is a somewhat misleading term.

ANNIE GUEST: Anthony Warren is from the advocacy group, Autism Spectrum Australia.

He says the label is an umbrella term, and the problems communicating and repetitive behaviours often described as autism fall into one of three disorders.

ANTHONY WARREN: The groups are autistic disorder, Asperger’s disorder and the third groups is atypical autism.

ANNIE GUEST: And more children are being diagnosed with these problems. In some areas, there’s been a 20-fold increase in two decades.

Last year, Australia’s first autism prevalence study found one in 160 young people have autism spectrum disorder. That’s consistent internationally, as is the rise in diagnoses.

In Queensland, politicians are blaming paediatricians and psychiatrists. The Education Minister Rod Welford told ABC Radio, he supports claims by his predecessor, that doctors are intentionally misdiagnosing children so they can qualify for support in the classroom.

ROD WELFORD: It’s a disgraceful state of affairs and I agree with him. There does appear to be an over-diagnosis of children with ASD or autism and there’s just no rational explanation for it.

And certainly if that evidence is extreme or substantial then it’s something that you would refer to the relevant medical authorities.

ANNIE GUEST: Similar concerns about diagnoses linked to funding have been voiced over the years in other states.

Autism Spectrum Australia’s Anthony Warren says it is a problem, but the big rise in the disorder is primarily because of better awareness.

ANTHONY WARREN: That’s because we’re better able to recognise the autism spectrum disorders and I mean that’s a very positive thing. On the other hand, there is a risk that of over-diagnoses.

ANNIE GUEST: And how prevalent is that over-diagnosis or misdiagnosis in Australia?

ANTHONY WARREN: Look I think that’s really impossible to know. I would have thought that, look, my experience in New South Wales is that may be a few misdiagnoses. If anything, there’s an under-diagnosis.

ANNIE GUEST: But with an internationally agreed classification system, that should not be happening.

Brisbane paediatrician Dr Neil Wigg describes the process of diagnosing a child.

NEIL WIGG: If I am suspicious that a child might have autism spectrum disorder, I work with clinical psychologists, speech pathologists, occupational therapists, a range of other people and when we then sit down and we do some quite specific assessments of children in order to be quite confident in the diagnosis.

Now that’s a lengthy and expensive process and that process is not available to all paediatricians and it’s certainly not available to all children in Queensland.

ANNIE GUEST: What are you saying there, are you saying that it’s possible that they’ve got it wrong?

NEIL WIGG: I’m saying that they are doing it on the basis of less evidence than other people who do more exhaustive testing.

ANNIE GUEST: But there’s hope that a new Federal Government program will force practitioners to adopt the internationally accepted criteria for diagnosis.

The $190-million package is currently being rolled out and Autism Spectrum Australia says children will not be able to access the early intervention programs unless they have been diagnosed in this way.

But for those already working in schools, all children labelled with these problems need their help.

Penny Beeston is the chief executive of Autism Queensland.

PENNY BEESTON: We actually never see children come through our doors with a diagnosis of autism who don’t have clear, clear traits of autism.

ANNIE GUEST: The five-year Federal Government packaged includes help education, support and early intervention services for children up to the age of six.

ASHLEY HALL: Annie Guest with that report.

© 2008 Australian Broadcasting Corporation
Copyright information: http://abc.net.au/common/copyrigh.htm
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Autistic group have impact on national regional arts festival

From the Wimmera Mail Times:

ORGANISERS of the 2008 Awakenings Festival have called the event a huge success.

The annual 10-day event held in Horsham is Australia’s only regional disability arts festival.

Awakenings Festival director Jacinda O’Sullivan said this year’s event was about diversity rather than just disability.

“The personal highlight for me this year was the introduction of the group Autism South Australia which gave the festival a different angle. It means the festival is emerging more into a celebration of diversity and not just disability,” she said.

 ”The group was made up of about 30 members with aspergers and autism who offered us brilliant insight and supported the festival in every component, through their attendance as well as engagement in the event.

“It was wonderful to have that different perspective.”

Ms O’Sullivan said her first year as festival director was a positive challenge.

“Of course it was a challenge but ultimately that has now put me in a better position to further develop the festival,” she said.

“We want to see it go from strength to strength.

“Disability arts will get a lot bigger in the future, I think, and Awakenings is in a position to lead the way.

“We need to be on the cutting edge and the feedback that we got for the festival tells us that we are taking it forward.”

Ms O’Sullivan said the help of volunteers was a big factor in the festival’s success.

“We have to thank all the festival supporters like businesses and the council as well as the hundreds of volunteers,” she said.

“Whether big or small, their support hasn’t gone unnoticed.

“We would like to take all the best things from this year and build on from there in 2009.”