Autism Album Debuts

From John O'Neil of The New York Times Locals' Blog

Last spring, I invaded these columns to tell about a local autism awareness music project, SingSOS!, that had been invited to perform at the United Nations. That was a high point on a long and winding road that has now led — at last! — to the release of the “Songs of the Spectrum” album in time for the holidays.
The album features original songs about autism, featuring performances by artists like Jackson Browne, Dar Williams, Marshall Crenshaw and other top names. The music is packaged with a shelf’s worth of handpicked autism resources, including excerpts from books by leaders in the field, all in electronic form.

Learning His Body, Learning to Dance

NEW YORK -- Gregg Mozgala, a 31-year-old actor with cerebral palsy, had 12 years of physical therapy while he was growing up. But in the last eight months, a determined choreographer with an unconventional résumé has done what all those therapists could not: She has dramatically changed the way Mr. Mozgala walks.
Mr. Mozgala and the choreographer, Tamar Rogoff, have been working since last winter on a dance piece called “Diagnosis of a Faun.” It is to have its premiere on Dec. 3 at La MaMa Annex in the East Village, but the more important work of art may be what Ms. Rogoff has done to transform Mr. Mozgala’s body.

New Yorkers Protest Proposed Cuts

ALBANY, N.Y. -- Dozens of New Yorkers with developmental disabilities and their advocates gathered outside of Gov. David A. Paterson's office last week to protest proposed cuts to the Office of Mental Retardation and Developmental Disabilities funding.
Attending the protest was Assemblyman Greg Ball, R–Patterson, who has publicly opposed the governor's deficit reduction plan, which would cut funding to OMRDD programs by 10 percent.
"We all know things are tighter than ever, and the state should step up and do its part. However, pick-pocketing the disabled to fill a budget gap is not the answer," said Ball. "This measure, if accepted, would endanger the health and safety of our extremely vulnerable population and destroy the quality of care for the neediest among us."
The assemblyman said a cut in state OMRDD funding would result in the loss of matching federal Medicaid funds as well.

Runaway Spends 11 Days in NYC Subways

When will the police realize that when a person with a developmental disability is missing, it can't be treated as just another missing person.


Day after day, night after night, Francisco Hernandez Jr. rode the subway. He had a MetroCard, $10 in his pocket and a book bag on his lap. As the human tide flowed and ebbed around him, he sat impassively, a gangly 13-year-old boy in glasses and a red hoodie, speaking to no one.
After getting in trouble in class in Bensonhurst, Brooklyn, and fearing another scolding at home, he had sought refuge in the subway system. He removed the battery from his cellphone. “I didn’t want anyone to scream at me,” he said.
All told, Francisco disappeared for 11 days last month. Since Oct. 26, when a transit police officer found him in a Coney Island subway station, no one has been able to fully explain how a boy could vanish for so long in a busy train system dotted with surveillance cameras and fliers bearing his photograph.
But this was not a typical missing-person search. Francisco has Asperger’s syndrome, a form of autism that often causes difficulty with social interaction, and can lead to seemingly eccentric behavior and isolation. His parents are Mexican immigrants, who say they felt the police were slow to make the case a priority.

Researchers Warn Against Misusing Report

Dr. Carlos Pardo was trying to head off trouble.
The Johns Hopkins neurologist and his colleagues had autopsied the brains of people with autism who died in accidents and found evidence of neuroinflammation. This rare look inside the autistic brain had the potential to increase understanding of the mysterious disorder.
It also, he knew, could inspire doctors aiming to help children recover from autism to develop new experimental treatments -- even though the research was so preliminary the scientists did not know whether the inflammation was good or bad, or even how it might relate to autism.
So when Pardo and his colleagues published their paper in the Annals of Neurology in 2005, they added an online primer that clearly explained their findings in layman's terms and sternly warned doctors not to use them to develop treatments.
Over and over, doctors in the autism recovery movement have used the paper to justify experimental treatments aimed at reducing neuroinflammation.

Supported Employments Makes Gains in Missouri

It may take a blend of public and private support, a dash or two of creativity, courage, and a little extra training to overcome obstacles, but supported employment for people with disabilities is beginning to gain ground in Missouri. According to the 2008 Missouri State Rehabilitation Council Report, the annual income of persons with disabilities who were assisted in obtaining community-based competitive employment increased by $46 million in 2008. And it's good for the economy as well -- every dollar spent in Missouri on supported employment returns $1.03 to taxpayers.

What's In a Name?

From The Los Angeles Times' health blog Booster Shots.

We health bloggers and reporters think about words a lot and care about using the right ones. So we were interested when we heard that a legislative proposal offered in the U.S. Senate recently would outlaw further use of the terms "mentally retarded" or "mental retardation" from federal statutes and policy papers in the area of health, education and labor.

Editorial: New Jersey Needs to Focus on Adults With Autism

Autism has been getting more of the attention it deserves in the last few years, and the once-grim landscape for people with autism is changing. Recent developments include a task force appointed by the governor, mandatory health insurance coverage and courses on the disorder offered to parents and teachers.
With greater understanding and wider acceptance, autism can move from the hushed side rooms to the main hall of daily life. But that will require a greater focus on treating and assisting adults with the disorder.

Going to Battle Against Autism

From Lisa Belkin's Motherlode, Adventures in Parenting New York Times' Blog. Be sure to check out the readers' comments, as well.

Any parent of an autistic child will tell you that their life is forever changed by their child’s condition. A recent study in The Journal of Autism and Developmental Disorders quantifies exactly how different that life can be. Researchers from the University of Wisconsin at Madison followed a groups of mothers and their autistic children (adolescents and adults) for eight days.

Assembly Bill Would Help New Jersey Adults With Autism

TRENTON, N.J. -- Adults with autism would be specifically covered by anti-discrimination laws under one of two new measures designed to assist people who have the disorder, Assembly Speaker Joseph Roberts said today.
The second bill would permit adults with autism to voluntarily place their names on a new state registry that will help New Jersey improve its planning and delivery of services, said Roberts (D-Camden).
The other would revise the state’s laws to specifically prohibit discriminatory acts against people with autism. Both would be introduced next week when the Assembly returns from a lengthy break, Roberts said.

Arizona Budget Cuts Target People With Disabilities, Suit Claims

Arizona officials have cut services to people with developmental disabilities at a greater rate than they have other services, and the courts should reverse that discriminatory policy, according to a complaint filed Monday in Maricopa County Superior Court.
A coalition for the developmentally disabled has filed the latest legal salvo against the state over its budget decisions.

Lessons of Willowbrook

If history teaches us anything, it is not to repeat the mistakes of the past. New York Governor David A. Paterson’s recent directive to reduce state allocation to the Office of Mental Retardation and Developmental Disabilities (OMRDD) by 10 percent is a chilling reminder that what’s old is new again.
A half century ago NYS was lauded for it’s efforts in supporting individuals with development disabilities in what at the time were considered state of the art facilities such as Willowbrook.
We all know what happened in that infamous institution when the State repeatedly cut back on its funding. The state of the art became a state of despair and thousands of people were forced to live in sub-human conditions.
Cuts of the magnitude proposed by Paterson will surely lead us down a similar path unless more reasoned voices prevail.

Questioning Change in Diagnosis

After the recent article The New York Times about dropping the diagnosis of Asperger's syndrome, thought we'd share several letters from readers:

Re “The Short Life of a Diagnosis” (Op-Ed, Nov. 10):
I’m writing in support of Simon Baron-Cohen’s argument for maintaining the diagnosis of Asperger’s syndrome in the Diagnostic and Statistical Manual of Mental Disorders.

A Special Member of the Team

He is the first player to be in uniform and the first to emerge from the locker room and onto the practice field.
As the players count off their calisthenics, he counts the loudest.
When equipment needs to be moved, he is the first to grab it and lug it to the other side of the field.
He is Marcel Green, No.73 on the Detroit Crockett High School football team, which advanced to a Division 3 regional final.
And he has autism.

Judge Rules In Favor of Autism Service Dog

TUSCOLA, Ill. – A Douglas County judge ruled on Tuesday that the Villa Grove school district must continue to allow a 6-year-old boy to bring his service dog with him to attend fall classes.
Nichelle and Bradley Drew of Villa Grove filed suit in circuit court to require the school to allow the dog, a yellow Labrador retriever named Chewey, to accompany their son, Kaleb, to school.

When the Handwriting Indicates ASD

A new and very small study shows that kids with autism spectrum disorder (ASD) tend to have worse handwriting than their non-ASD peers.
Of 14 kids with ASD and 14 without who were asked to complete a standardized handwriting test, those with ASD specifically had trouble forming letter shapes correctly. Otherwise their handwriting was fine. They spaced and aligned letters correctly and -- perhaps because the test dictated the size of the letters -- made them the right size.
The researchers (from the Johns Hopkins School of Medicine and the
Kennedy Krieger Institute, both in Baltimore) speculate that the handwriting deficit likely stems from the poor fine-motor skills associated with ASD.

Health Care Reform and People With Disabilities

The Health care reform legislation passed Saturday by the House of Representatives is the "high water mark" for people with disabilities, advocates say, but the measure still has a long way to go as all eyes turn to the Senate, which must consider the legislation next.
The House bill, which comes after months of negotiation and heated debate, requires health insurers to offer more comprehensive coverage and to provide insurance to a wider swath of the population including those with pre-existing conditions. The measure would also create new long-term care options and expand Medicaid.
"The fact that the package has paid such attention to people with disabilities is very significant," says Marty Ford, chair of the Consortium for Citizens with Disabilities.

Struggling Economy Hits People With Disabilities in Workplace

MENTOR, OHIO -- Bill Sutton is hard at work cleaning dishes at HomeTown Buffet in Mentor.
"I like it here. There's nice people," he said during a break on his six-hour daytime shift.
Sutton, 49, of Eastlake, is one of 120 disabled people who found work at various restaurants, laundries, hotels and factories through the Lake County Board of Mental Retardation and Developmental Disabilities' Community Employment Program.
But such jobs are becoming more scarce in today's economy.
The national unemployment rate is 10.2 percent.
However, at least 62 percent of people with mental and physical disabilities are currently out of work, according to U.S. Census data.

Advocacy Video Sparks Controversy

Few medical conditions rival autism as a magnet for controversy. Practically everything about the disorder — its cause, its treatment, the way it is diagnosed, how it is studied — is subject to bitter dispute, sometimes to the point of death threats.
The most impassioned disagreements are propelled by desperate parents of autistic children, but increasingly, people who themselves have an autism spectrum disorder (ASD) diagnosis are speaking up. And their priorities, surprisingly enough, are not always in line with the advocacy groups who seek to represent their interests. (See six tips for traveling with an autistic child.)

The latest example is the eruption over a video produced for Autism Speaks, the nation's largest autism advocacy group. The slickly produced video, written by Grammy-nominated songwriter Billy Mann and directed by Academy Award–winning director Alfonso Cuarón, shows a series of images of children with autism, accompanied by an ominous voice-over: "I am Autism ... I know where you live ... I live there too ... I work faster than pediatric AIDS, cancer and diabetes combined ... And if you are happily married, I will make sure that your marriage fails."

Special Education Grants for Catholic Schools

When her son Alex neared his first communion, Francesca Pellegrino wanted to enroll her son in Catholic school, but found there were few options at the small institutions for a boy with mild cerebral palsy and intellectual disabilities.
Alex, now 17, never did end up going to Catholic school. But Pellegrino, of Kensington, MD., wanted to make sure other children would get the chance.
"I started talking to other families and realized I was not alone," she said. So with the help of other parents brainstorming "around the dining room table," in 2004 she founded the Catholic Coalition for Special Education, a nonprofit organization that awards grants to Maryland Catholic schools to help pay the salaries of special education teachers and aids. The organization recently awarded $107,500 in grants to seven Maryland schools. The program encourages the schools to provide as much interaction between special education students and students in the general classroom as possible, a connection Pellegrino said equally benefits both groups.

Texas School Probe on Use of Restraints

AUSTIN – Texas educators forcibly pinned down students with disabilities more than 18,000 times in the last school year, sometimes injuring them in the process.
A Texas Tribune review of state data shows public school educators used so-called “physical restraints” – a tool to control or discipline students with disabilities – roughly 100 times a day during the 2007-08 school year.
Disability rights advocates say the numbers point to a crisis in Texas special education. They say teachers are resorting to physical restraints because they aren’t properly trained to manage their students’ disabilities – posing a threat to vulnerable children and to themselves.

Childhood Vaccines, Autism and Danger of Group Think

Los Angeles writer Amy Wallace knew there would be blow back when she wrote a story for Wired magazine debunking the idea that autism is caused by childhood vaccinations. But she didn't imagine anything like this.
Two weeks after the story hit the Internet, the e-mail keeps flowing. A majority voice support for “An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All.” But at least one in five disagrees. Many seethe with indignation. A few sling vile names and veiled threats.

A Powerful Identity, a Vanishing Diagnosis

It is one of the most intriguing labels in psychiatry. Children with Asperger’s syndrome, a mild form of autism, are socially awkward and often physically clumsy, but many are verbal prodigies, speaking in complex sentences at early ages, reading newspapers fluently by age 5 or 6 and acquiring expertise in some preferred topic — stegosaurs, clipper ships, Interstate highways — that will astonish adults and bore their playmates to tears.
Much of the growing prevalence of autism, which now affects about 1 percent of American children, according to federal data, can be attributed to Asperger’s and other mild forms of the disorder. But no sooner has Asperger consciousness awakened than the disorder seems headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012. If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.

Halloween Lasts Just a Little Bit Longer

PEMBROKE, Mass. - Halloween lasted one more day for the witches, vampires, princesses, and queens who hit the dance floor last evening at the Knights of Columbus lodge.
Building off of the special needs prom he has organized for two years, Kevin McKenna, 51, of Hanson, threw the Halloween party Sunday for special needs children and adults.
“There is not enough being done for special needs,’’ said McKenna, a former Boston Housing Authority police officer and Grand Knight of the Pembroke Knights of Columbus, who added that about 150 special needs children and adults attended. “We wanted the kids to have a second chance to wear their costumes.’’
“Anything that can get these kids out to socialize with their peers is wonderful,’’ said Joann Reale, 47, of Scituate. Joann’s daughter, Hannah, who has Sturge-Weber syndrome, a neurological disorder, dressed as an angel. The 19-year-old said she was most excited to be dressed up and dance at the party.

All Learning Comes to Use

From Sunday's New York Times, a profile of Ellen Zimiles, Chief Executive of Daylight Forensic Advisory in Manhattan, and why her company hires people with autism trained through the YAI Network.

My younger child, Daniel, 13, was born with autism. We knew when he was 2. Although I’ve always worked, my focus was trying to figure out how to help my son. My background in speech pathology turned out to be useful. I realized that nothing you learn in life is for naught — everything will serve you at some point. You just don’t know when.
Several years ago, I decided that if I wanted my son to get a job someday, I had to put my money where my mouth is. Two people with autism now work at our firm. I would tell other executives that hiring people with autism adds exponentially to a company’s culture. You get back more than you give. We recruited these workers through the YAI Network.