Australian couple starved daughter, 7, to death

SYDNEY (AFP) — An Australian couple have been convicted of starving their autistic seven-year-old daughter to death after a harrowing trial which heard the girl weighed just nine kilograms (20 pounds) when she died.

Prosecutors said the emaciated girl had resembled a Holocaust victim, while ambulance workers called to the scene said she looked “mummified” shortly after her November 2007 death in the Hunter Valley, north of Sydney.

A jury deliberated for almost a week before finding the girl’s mother, 35, guilty of murder and convicting her 47-year-old father of manslaughter, national news agency AAP reported.

The pair, who cannot be named for legal reasons, had pleaded not guilty to murder.

Several medical experts testified the girl suffered the most severe case of malnutrition they had seen, saying her head looked like a skull wrapped in skin and that her muscles were wasted due to long-term neglect.

The mother’s barrister Dennis Stewart described his client as a prescription drug addict unable to cope with day-to-day matters who had believed she could nurse her daughter back to health.

He said he her actions were “foolish, irresponsible, negligent to the point of attracting criminal results” but did not warrant a murder conviction — an argument the jury rejected.

The father’s defence was that his wife was the only person who could feed and care for their daughter because of her autism, and the mother had never indicated there was a problem with the girl.

The mother will be sentenced Wednesday and the father in six weeks. Justice Robert Allan Hulme offered the jurors counselling, AAP said.

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Autism Center must be saved

Quinn: Autism center must be saved By Adam Testa, The Southern
Thursday, June 18, 2009 10:55 PM CDT

CARBONDALE - Gov. Pat Quinn made his message clear within two minutes of walking into Southern Illinois University Carbondale's Wham Education Building, home of the Center for Autism Spectrum Disorders.

"We've got to save the program here," he said, shaking hands with center Director Tony Cuvo before a news conference. "We've got work to do."

The autism center was one of many stops Quinn has made recently on a statewide tour of social service entities, a tour many of his opponents have called fear-mongering.

Quinn, who is promoting citizen engagement in encouraging legislators to approve a state budget including a two-year, 50-percent income tax hike, decried those allegations, calling the tour "truth telling."

A state budget remains in gridlock in Springfield with a new fiscal year slated to begin July 1. A "doomsday" budget projects cuts of up to 50 percent to many of the state's social services, which Quinn said should not even be an option on the table.

"We have to have programs that help families stick together, stay together and move ahead," he said to a crowd of more than 100.

Cuvo addressed the crowd about the importance of the autism center and the role it plays in Southern Illinois. Through state funding, the center has assessed more than 460 children from the region, provided therapy to more than 120 of them, helped many autistic children transition into regular classrooms and affected the lives of families from about 115 communities across more than 30 counties, he said.

"They will have to go out of the region, including out of the state, to get diagnosed," Cuvo said of the effect the closure of the center, which would happen under the state's worst-case scenario budget. "It will be a very sad day for children with autism and their families throughout Illinois."

Quinn said he would not approve a budget that does not include an income tax increase and that cuts funding for essential social services. He also bashed a rumored possibility of operating the state budget on a month-by-month basis for six months, referring to it as the "juvenile way to go" and comparing it to the actions of his predecessor, ousted Gov. Rod Blagojevich.

"We are going to fight until our last day, until our last breath to save this program," Quinn said. "I don't want to cut the heart and soul of Illinois."

adam.testa@thesouthern.com, 618-351-5031

We are working hard to save ours in KL too..

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Autism insurance bill passed by New Jersey Assembly

Autism insurance bill passed by New Jersey Assembly 

Posted by cstetler May 21, 2009 16:05PM

Autism therapy should be covered by insurance companies, the New Jersey Assembly voted today.

The New Jersey Assembly today approved a bill that will require insurance companies to cover the cost of therapy for autism, which affects 1 in 94 children in New Jersey, making it the state with the nation's highest rate of autism.

The proposal requires health insurance companies to cover the cost of autism treatment deemed medically necessary, including speech and occupational therapy, with an annual cap of $36,000. It also mandates coverage for behavioral therapy, which includes exersizes like helping an autistic child learn to make a sandwich.

If the measure is approved by the State Budget Committee, New Jersey will become the tenth state to enact such a law.

***** In Malaysia *****

If you have difficulty cover your child within Malaysia, do speak to me and we see how we can get it done legally. Email : Shiokx@gmail.com or Call +60122082818


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Erasing Autism

Erasing Autism

Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried?

Claudia Kalb
NEWSWEEK
From the magazine issue dated May 25, 2009

It's spring in Washington, and Ari Ne'e-man, with his navy suit and leather brief-case on wheels, is in between his usual flurry of meetings. Ne'eman is a master networker, a guy you'd think was born in a campaign office and bred in the halls of the Capitol. He's fluent in policy-speak and interacts seamlessly with high-level officials (he's just had lunch with the acting vice chair of the Equal Employment Opportunity Commission) and inquisitive reporters alike. He's formal but sociable and has a well-timed sense of humor. He also has a problem with velvet. I knew this about Ne'eman—he'd mentioned it when we first started talking more than a year ago—but now, in a D.C. coffee shop, he gets into the sensory details. His father used to drive a car that had fuzzy velvet-like cushioning, and it made Ne'eman crazy to sit in it. "I'd wince because I'd think about how it would feel to get that under your fingernails," he says. I think I see him shudder at the memory.

Ari Ne'eman is 21 years old and has Asperger syndrome, a high-functioning diag-nosis on the wide-ranging autism spectrum. Ne'eman's velvet aversion is triggered somewhere deep in his brain, a brain that he happens to relish. He doesn't want anybody to mess with or, God forbid, cure his Asperger's. It's who he is, who he's always been. It's why he's had ob-sessive interests since toddlerhood. At 2½, he saw a dinosaur skeleton at New York's American Museum of Natural History and announced, "That's a pterodactyl." From there he fixated on baseball, reciting players' names and stats ad nauseam, whether or not anyone was listening—a behavior experts call perseveration. Later it was Constitutional law. His friend Ben DeMarzo remembers driving with Ne'eman and two other classmates one high-school weekend. DeMarzo and the others wanted to listen to music—the Beatles were a favorite—but Ne'eman had other plans. "Ari made us listen to Supreme Court oral arguments. It was brutal," DeMarzo tells me. He was outnumbered—how'd he win? I ask. DeMarzo laughs. "Ari always wins," he says.

He certainly puts up a fight. Ne'eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a nation-al conversation about autism without the voices of people who should be at the center of that conversation," he says.

Ne'eman's network has local chapters in 15 states, and he works closely with organizations like the EEOC and the American Association of People With Disabilities. Neurodiversity activists see their mission as a fight for civil rights, and Ne'eman and others are willing to stir un-rest. "Ari's very straightforward," says Lee Grossman, head of the Autism Society of America, who supports many of Ne'eman's efforts. "He tells it like it is from his perspective." Ne'eman has taken on powerful organizations, specifically Autism Speaks, the largest science and advocacy group in the country, be-cause he believes they rely on fearful stereotypes and focus their research too heavily on what causes autism as opposed to improving quality of life for autistic people today. Last year he helped stop an edgy "ransom notes" ad campaign created by New York University's Child Study Center to raise awareness about autism. One said, "We have your son" and are "driving him into a life of complete isolation." It was signed "Asperger Syndrome." Ne'eman was appalled. "There's a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place," he says. "That's not true."

The autism spectrum itself, however, is a universe with multiple galaxies, including nonverbal toddlers who bite themselves and college grads who can't tell the differ-ence between sarcasm and seriousness. This complexity leads to passionate and conflicting viewpoints. Not everybody stands behind Ne'eman, and some adamantly op-pose his views. One major area of contention: scientific research, which includes the hunt for autism genes.

I knew Ne'eman had a surprising outlook on this and figured he'd have something to say about the recent news that scientists have found common gene variants that may account for up to 15 percent of all autism cases. This is big in a disorder that varies so enormously from one individual to the next. Environmental factors also play a role, but if scientists can test for specific genes—most of which have yet to be discovered—they may be able to intervene much sooner to help kids. One day they might even find a cure. This is exciting for parents who want to understand the roots of the disorder. Therapies—some helpful, some shams—vie for their attention and their pocketbooks, and they'd welcome better, more targeted treatments. But the new genetic advances concern Ne'eman. He doesn't believe autism can be, or should be, cured. His ultimate fear is this: a prenatal test for autism, leading to "eugenic elimination." If a test is developed one day, it will be used, he says. And that means people like him might cease to exist.

When I press Ne'eman on genetic research—doesn't it have some merit?—he says he doesn't oppose it outright, but he believes scientists must consider the ethical implications of their work far more carefully. Already couples are testing embryos for diseases like Huntington's, then choosing to implant only the healthy ones. And who can blame them? But autism isn't a fatal condition. Should people without the disorder be allowed to judge the quality of life of someone who has it? "That is a message that the world doesn't want us here," says Ne'eman, "and it devalues our lives."

The prospect of no more Ari Ne'emans—whether you agree with him or not—is haunting. Termination of fetuses with Down syndrome is routine today; given the fear that autism inspires in parents, why wouldn't it follow? And what would our world be like without autism? The vast differences among individuals on the spectrum make the notion even thornier: will parents start demanding to know whether their fetus will be low- or high-functioning? But it's also impossible to ignore the parents who say they'd do anything to free their children from isolation and pain. Some feel so hopeless so much of the time, they do wonder in private if their children would have been better off not born. And who can blame them?

Ne'eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. "People who see Ari today have no idea where he's been," she says. As a young child, Ne'eman was verbally precocious but socially challenged. "I didn't understand the people around me, and they didn't understand me," he says. He was bullied and ostracized—back then he didn't look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as leisure reading. "I think the word 'freak' may have come up," he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne'eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he's learned to play along. Still, none of it is easy. "You come out of a meeting and you've put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases," he says. "Even if you learn to do it in a very seamless sort of way, you're still putting on an act. It's a very ex-hausting act."

He remembers being taught in social-skills training that when people are happy they smile with all their teeth, and when they're sad they wear exaggerated frowns. "I was always wondering, 'Why is everybody around me neither happy or sad? They don't have emotions'," he says. When you're autistic, social interaction can be like a foreign language: no matter how fluent you become, you're never a native speaker. Katie Miller, a fellow activist, jokes that "Ari is the only autistic we know whose special interest and talent lies in networking." But, she says, "it didn't come naturally. He's learned it the way every-body else learns algebra." Ne'eman has a way of taming the stress he feels: he wears a tie because it puts a soothing pressure on his neck. "It's a good way of calming my anxiety," he says.

One of Ne'eman's latest efforts is a new public-service announcement called "No Myths," which he helped create with the Dan Marino Foundation, a funder of autism research. In it, Ne'eman appears in a red sweater and tie along with others on the spectrum, including a man who speaks through a communication device. "Our futures have not been stolen," Ne'eman says. "Our lives are not tragedies." The message is clear: We stand before you. Don't make us go away.

URL: http://www.newsweek.com/id/197813

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Autism's lonely questions

Autism's lonely questionsby The Oregonian Editorial Board
Friday May 15, 2009, 12:33 AM

Without better research, Oregon families will keep exhausting themselves looking for answers

If any medical condition warrants more attention and research, it is autism. The uncertainty surrounding this common brain disorder takes a terrible toll on families -- especially in Oregon, where diagnosed autism rates are higher than the national average.

It is a condition characterized by questions rather than answers: Who will help us? Will I ever connect again with my child? How much hope should we have? Do any treatments work, and what if we can't afford any of them?

No family should have to face these questions alone.

About 1 in 150 children in the United States has an autism spectrum disorder, according to the Centers for Disease Control and Prevention. The rate in Oregon is considerably higher. Some estimates based on school data peg the number as high as 1 in 87.

Behind the numbers are a thousand stories of parents struggling to cope. They are told the disorder is incurable, but lately they've been peppered with stories of miracle cures. They read about various promising behavioral treatments, which tend not to be covered by health insurance or offered through the local public school.

They are told autism is biological. Or maybe environmental.

On top of all that come the dirty looks at the grocery store.

Perhaps this helps explain why disagreements within the autism community can be so fierce and personal. The stakes are so high, the parenting can be so lonely, and the research is still so thin.

Portland State University is hosting a statewide conference this weekend about educating children with autism. The keynote speaker, Dr. Laura Schreibman, is a longtime advocate of basing autism treatments on good science and not on anecdotes and testimonials. She's a controversial figure herself, at least among people who think she dismisses promising new treatments.

But Schreibman brings up the right point: The need for better autism research is painfully clear.

The federal government is preparing to invest $1.1 billion in "comparative effectiveness research," which will evaluate and rank various therapies for different health problems. The Obama administration also intends to boost funding for medical research in general.

It's not clear whether autism will be treated as a priority area, but it should be. Without better methods to diagnose and treat autism, and without a better understanding of what causes the disorder, families will continue to bankrupt themselves looking for homegrown cures. These families need more guidance. So do the health insurers and school districts that are supposed to act as partners.

We don't know the answers.

We're still learning the right questions to ask.

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Child Custody - Bitter Truths

Child custody may be conceptualized as the legal relationship between a child and its parents. It encompasses the right of the parents to care for the needs of the child and to take decisions for the welfare of the child. There are basically two types of child custody; the first is sole custody where the custody of the child is entrusted with only one parent as per the court proceedings and the second is the joint custody where both the parents are entitled to the child custody. During the divorce proceedings, during separation of a couple or the annulment of a legal marriage, such child custody issues may emerge for appropriate dealing.

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Autism insurance help supported

Autism insurance help supported
BY JULIE BISBEE
Published: April 15, 2009

Children with autism would have access to insurance under a bill the Senate passed Tuesday.

House Bill 2027 would create a state license for certified behavioral analysts and increase training for therapists who would evaluate and diagnosis autism spectrum disorders. An amendment by Sen. Jay Paul Gumm, D-Durant, would provide insurance coverage to children under the Oklahoma Health Insurance High Risk Pool.

The pool was created by the Legislature in 1995 to provide insurance to residents unable to get individual coverage. Participants still pay premiums.

"The Senate poured the foundation and created a comprehensive bill that offers a glimmer of hope for families struggling to care for their children with autism,” Gumm said.

The bill, sponsored by Sen. Ron Justice, R-Chickasha, passed the Senate 48-0 and is now headed to a conference committee, where more changes could be made.

Justice said the bill could help build a network of treatment providers for children with autism.

"This is the right program to continue to build on,” Justice said.

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Wednesday January 28, 2009

Falling short 

ONE VOICE By PANG HIN YUE

The Persons With Disabilities Act 2008 has been reduced to a mere administrative document. Who then can the disabled turn to for help?

UNLIKE previous seminars held at the Bar Council headquarters, there was a conspicuous absence of Special Branch officers at the recent talk on “Persons with Disabilities Act 2008: What Next?”

The Bar Council’s Human Rights Committee chairman, Edmund Bon, reckoned it was because the disabled community was perceived as “non-threatening”.

It may not have had the tension and drama that come with some of the more explosive issues that the Bar Council had attempted to address, but it was no less emotionally-charged. No less gut-wrenching, when participants shared how time and again they had been discriminated against by a system that was divided by the them-and-us polemics.

Among them was Christine Lee of Barrier-Free Environment and Accessible Transport (BEAT). Even though the Persons With Disabilities Act (PWDA) had come into force last July to accord equal rights to the disabled, Lee still found herself being discriminated against on account of her physical disability.

Just two days before the Bar Council meeting, she was invited to speak at a hotel. However, upon reaching the hotel, she discovered there was no parking space allocated for wheelchair users, forcing her to park her car at the VIP bay. The hotel staff warned that if she did, they would clamp her car. Sure enough, after her talk, she found her car clamped and was told to pay a fine.

“Why should I be made to pay for a service the hotel had failed to provide?” Lee asked. It was only after talking to the senior hotel management staff that they released her car without imposing a fine on her.

How ironic that Lee was penalised when the builders of the hotel had flouted the Uniform Building By-Laws by failing to provide facilities for the disabled. This incident underscores the fact that despite being touted as a rights-based law, the PWDA is silent on sanctions and penalties against parties that discriminate against the disabled.

As president of the Malaysian Bar Council Datuk Ambiga Sreenevasan noted: “There is no provision for any penalty for any party who does not live up to the obligations under the Act. In fact, (under Section 41 of the Act), the Federal Government is expressly excluded from any wrong-doing for any failure to address the needs of persons with disabilities.”

Access to public transportation remains a challenge for the physically disabled.

She added that although the Act states that persons with disabilities (PWD) have the right to enjoy the benefits of public transport, housing, education, employment and healthcare, it does not offer remedies if they face discrimination in these areas.

Bon admitted that many lawyers are unaware of issues confronting the disabled and urged the latter to bring their grievances to the law fraternity so that both parties could work together to push for equal rights for the disabled.

The participants testified that access to public transport, buildings and amenities remains the bane of the physically challenged. Even though it is compulsory for developers to incorporate features such as ramps and disabled-friendly toilets and car parks under the Uniform Building By-Laws, enforcement is sorely lacking.
Securing insurance is another mission impossible. For the learning disabled community that includes persons with Down syndrome, autism and attention deficit hyperactivity disorder, access to services to enhance cognition and to overcome sensorial problems, remains elusive.

The Special Education regulations under the Education Act, for instance, has a discriminatory clause that states only those who are “educable” are admitted to school.

Is it then possible to use the PWDA to compel the Education Ministry to amend the regulations?
Lawyer Helen Chin, an advocate for the learning disabled, pointed out that Section 28 of the PWDA states that persons with disabilities shall not be excluded from the general education system on the basis of their disability. “For the purpose of streamlining current legislation relating to special education, the term ‘educable’ should be deleted to avoid inconsistency and ambiguity,” Chin asserted.

Given the multi-faceted issues affecting the physically and mentally disabled, how is it that the PWDA seems to fall short of expectations? Perhaps the history of how it came about could shed some light.
In 2002, when representatives from various organisations were roped in to form a committee to draft the Bill, they rejoiced. They laboured over it for the next five years, raising salient points to be included in the Bill.

Among them was Bathmavathi Krishnan, secretary of the Malaysian Confederation of the Disabled.
But to their dismay, when the Bill was tabled and passed in Parliament late 2007, they realised it had deviated from the original draft. “It was a very much watered down version of the original,” said Bathmavathi.
Thus the PWDA had been reduced to what she called, “an administrative document which merely imposes obligatory responsibilities on the various ministries to undertake certain actions to improve the lives of PWDs. Without any sanctions for non-compliance, it renders the Act almost ineffective.”

Lawyer Mah Hassan Omar who is president of the Malaysian Confederation of the Blind and who presided over the committee said: “The final version (of the Act) was far different from the original draft and people with disabilities were not fully consulted for the final document.”

Under the Act, the Minister of Women, Family and Community Development is vested with power to appoint a maximum of 10 persons whom she deems as having appropriate experience, knowledge and expertise to be in the National Council for Persons with Disabilities. The council also has members representing nine ministries, including the the secretary-generals of finance, transport, health, human resources and education.

The secretary-general of the Housing and Local Government Ministry, strangely, is not in the council.
The council is expected to meet three times a year to review, recommend, implement and advise on various measures affecting the disabled. Towards this end, the Department for the Development of Persons with Disabilities will be created to assist the council in the areas of registration, protection, rehabilitation, development and well-being of PWDs.

While the Act is silent on protecting the rights of the disabled by way of imposing sanctions and penalties, it is explicit in shielding the council in that no party is allowed to take legal action against it.

Despite the hiccups, it is hoped that through other sections of the Act, there is room for the disabled to seek redress. Under Section 43 of the Act, the minister is given power to introduce regulations. It is hoped that through this provision, Datuk Dr Ng Yen Yen who took over the portfolio after the March 2008 election, will bring about the necessary reforms to make the Act air-tight.

Further, Section 13 states that the Council can recommend changes to existing laws or propose new ones to improve the lives of the disabled. “This area should be fully exploited,” stressed Bathmavathi.

She proposed that Article 8(2) of the Federal Constitution be amended to outlaw discrimination against the disabled. She urged the Minister in her capacity as the Council’s chairman, to institute Section 46 to amend the PWDA to include sanctions and penalties for non-compliance. And to ensure the Council acts without fear or favour, Bon proposes that a Shadow Council be established as well.

Although Dr Ng is barely one year into her new job, the burden is on her, being the key person vested with power under the PWDA, to do what is right for the 2.7 million PWDs in Malaysia.

• One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of children with learning difficulties. Feedback on the column can be sent to onevoice4ld@gmail.com.

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