Disability news, Accessibility Issues, Disability Issues, Accessiblity News

Archive for the ‘treatments’ Category

Journalist: Autism misdiagnoses are skewing research data

Tuesday, October 6th, 2009

On theAtlantic.com, journalist and filmmaker Jody Becker questions current research that has found a rising incidence of autism among American children. Becker says government eligibility standards for services may be driving the increase in diagnoses, as doctors are forced to misdiagnose kids in order to get publicly funded help for them.

“Every day, precious time and money is wasted as kids who don’t belong in the autism world get pushed into it,” she says. “Finally, parents are pushing back.”

Becker is the producer of Autistic-Like: Graham’s Story, a documentary about a California family whose son son was given a provisional diagnosis of autism and a prescription for Applied Behavioral Analysis — even though he had Sensory Processing Disorder, a milder syndrome that’s not on the autism spectrum. The family’s pediatrician told them to keep the inaccurate autism label so the state would pay for treatment.

Down syndrome reveals a key to halting cancer

Thursday, May 21st, 2009

From Nature News, Forbes, US News & World Report, BBC News, Reuters, MIT Technology Review:

People with Down syndrome rarely get most kinds of cancer, and researchers have now found a reason why: they have an extra copy of a gene that keeps tumors from growing.

A study published yesterday in the journal Nature finds that the DSCR1 gene on the extra copy of the chromosome that causes Down syndrome can starve some cancers — a finding that leads to hope of cancer treatments for the broader population.

“This is a big finding,” said Sandra Ryeom, a biologist at Children’s Hospital Boston and one of the study’s authors. “It offers us all these new targets for cancer therapy.”

Down syndrome is caused by an extra copy of the 21st chromosome, and is associated with a host of health issues including mild to moderate developmental disabilities and a heightened incidence of heart problems and Alzheimer’s disease. Yet research has also found that people with Down syndrome are highly resistant to cancer, with a mortality rate that is less than one tenth that of the general population.

Ryeom said she hoped the study could lead to the creation of preventive therapies that would protect people against developing cancer. But other researchers cautioned against too much optimism, saying the study may not lead to effective anti-cancer drugs any time soon.

Earlier post here.

Research: Autism ‘recovery’ possible for some

Monday, May 11th, 2009

Leo Lytel, Associated Press photoFrom the Associated Press/MSNBC and the [UK] Telegraph:

A growing body of research suggests that some children with autism have been able to “recover” from the condition, usually after years of intensive behavioral therapy.

University of Connecticut psychology professor Deborah Fein presented data at an autism conference in Chicago last week that included 20 children who had previously been diagnosed with autism but were no longer considered autistic. Fein’s study was funded by the National Institute of Mental Health, and involved children aged 9 to 18.

Fein estimated that 10 – 20 percent of children diagnosed could “recover,” but said recovery was “not a realistic expectation for the majority of kids.”

Many of the children who “recovered” had relatively mild cases of autism and above-average IQs; most received long-term behavior treatment soon after diagnosis, sometimes 30 or 40 hours weekly. Recovery was generally evident by around age 7, and nearly three-fourths of those who recovered have had other disorders, such as attention deficit problems and phobias.

See also:

Why Does the Vaccine/Autism Controversy Live On? — Discover

(Associated Press photo of Leo Lytel, who was diagnosed with autism as a toddler and undiagnosed at age 9)

Navigating the maze of autism treatments

Tuesday, January 20th, 2009

Writing in the New York Times, Personal Health columnist Jane E. Brody chronicles the journey of a New York couple who have tried both traditional methods and alternative practices in their attempt to help their child with autism.

Among the methods that Rochelle and Ian Yankwitt have sampled: Speech therapy, occupational therapy, special education, diet changes, supplements, creams, chelation therapy, and hyperbaric oxygen therapy.  They think their son is a little bit better, but don’t know whether anything they’ve tried has made the difference.

Brody interviews Laura Schreibman, author of “The Science and Fiction of Autism,” who says behavioral intervention is the only approach that has been scientifically proven to help children with autism. An excerpt:

With the increase in awareness of autism and improvements in diagnosis, more children today can get an early start on effective therapy rather than wasting valuable time, effort and money on remedies that lack a scientific basis and proof of effectiveness.

Parents fight for treatment of daughter with Tay-Sachs

Tuesday, July 1st, 2008

From the BBC, [UK] Telegraph:

The Welsh parents of a girl with a terminal illness say they will fight a hospital’s decision to withhold life-saving treatment. They say doctors told them their daughter, who is on a ventilator, was at the end of her life and that a judge would have to authorize further care.

Amber Hartland, 6, has Infantile Tay-Sachs, and is almost totally paralyzed and unable to speak.

“We believe it is about money,” said Lesley Hartland, Amber’s mother. “But my father, my husband’s mother and father, they have all paid their taxes and have never used the health service. Everyone is entitled to the health service.”

“Amber has a right to life,” she said.

Hospital sources said cost was not an issue, and that the child was receiving high quality and compassionate care.

Missouri, Illinois consider insurance coverage for autism

Monday, April 14th, 2008

disability news and commentary, Harry Schad‘Autistic and uncovered’

From the St. Louis Post-Dispatch:

Molly and Steve Schad say they have spent about $60,000 on various treatments for their son Harry (left) since he was diagnosed with autism five years ago. Bills under consideration in Missouri and Illinois would require insurance companies to provide some coverage for autism treatments.

Insurance companies are wary, and say mandating benefits could make premiums shoot up without necessarily providing better care. They say many autism treatments are unproven, and that much remains unknown about the disorder.

Meanwhile, parents like the Schads report that efforts to help their children are causing them financial hardships. In a recent study, parents described filing for bankruptcy, liquidating retirement funds, and stripping the equity out of their homes to pay for services not covered by insurance. Parents also reported losing income as they gave up their jobs to care for their children with autism.

Presently, about 30 states do not mandate insurance coverage for autism.

Dr. Phil advises institutionalization for boy with DS, autism

Friday, March 28th, 2008

‘Tired of being a mom: A 12-year nightmare?’

‘Should the boy be institutionalized? Find out what Dr. Phil thinks’

The syndicated Dr. Phil television show this week features an episode on women who say they can’t cope with their children. One of the spotlighted families has a son with both Down syndrome and autism. The boy is described this way on the show’s website:

Cyndi says if she’d known her 12-year-old son, Alex, had autism and Down syndrome, she may not have brought him into the world. She says he hits himself, screams, and wears diapers because he’s not potty trained. Her husband says he doesn’t find it difficult to care for Alex.

(more…)

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More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

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