Promise Seen in Drug for Intellectual Disabilities and Autism

An experimental drug succeeded in a small clinical trial in bringing about what the researchers called substantial improvements in the behaviors associated with retardation and autism in people with fragile X syndrome, the most common inherited cause of these mental disabilities.
The surprising results, disclosed in an interview this week by Novartis, the Swiss pharmaceutical giant that makes the drug, grew out of three decades of painstaking genetic research, leaps in the understanding of how the brain works, the advocacy of families who refused to give up, and a chance meeting between two scientists who mistakenly showed up at the same conference.

Stanley I. Greenspan, 68; Expert on Infant Development

Stanley I. Greenspan, 68, a child psychiatrist who wrote more than a dozen parenting books and developed the popular "floor time" method for reaching children with autism and other developmental disorders, died April 27 at Suburban Hospital in Bethesda of complications from a stroke.
In a career spanning 40 years, Dr. Greenspan drew praise for his early research on infant development and later found a wide following as an author and public speaker. At the time of his death, he was a professor at George Washington University's medical school.

Proposed Community Stirs Debate in Florida

A debate is brewing in Florida between families who want to establish retirement-style communities for adults with developmental disabilities and those who believe that inclusive, community living is more appropriate.
Groups across the state want to develop new neighborhoods specifically for people with developmental disabilities and their families. Much like the retirement communities that dot the sunshine state’s landscape, the proposed developments would offer a mix of apartments, single-family homes and group homes in addition to amenities like community dining rooms.Trouble is that a Florida law bars group homes from being within 1,000 feet of each other, largely preventing the retirement-style communities from moving forward. Now, a bill under consideration in the state legislature would allow local governments to make exceptions to the rule.

HIgh Stakes in Kansas Budget

TOPEKA, KS. -- Lives literally may be in the balance as the Legislature reconvenes today and seeks to pass a new state budget.
Since 2009, 65 Kansans have died while on waiting lists for in-home services, according to Shannon Jones, executive director of the Statewide Independent Living Council of Kansas.
"People are languishing," she told the Lawrence Journal-World. "Reducing their quality of life does lead to their death without dignity."
Budget decisions also will determine whether some Kansans remain independent. People with developmental disabilities and their advocates will rally in Topeka on the south side of the Capitol this morning to raise awareness of how budget cuts are affecting their lives. More than 4,000 Kansans with developmental disabilities are on waiting lists for help.

TV Review: Measured Dose of Fact and Friction in "The Vaccine War"

There are no bad guys in "The Vaccine War," no hiss-worthy villains who make it easy to decide which side we’re on.
But that doesn’t make this documentary about the fierce struggle between vaccine opponents and public-health specialists any less engrossing. "Frontline" does its usual meticulous job in sifting through the scientific and medical evidence, while also making room for the wrenching human stories that make this such an emotionally charged issue. The show airs tonight at 9 on Boston's WGBH-TV.
Although "The Vaccine War" notes that scientific studies have found no connection between the vaccine and the disorder, parents such as the actress Jenny McCarthy, whose son was diagnosed with autism after a series of vaccinations that included MMR, have insisted that their personal experience shows otherwise.

Nebraska Programs to Focus on Jobs

LINCOLN, Neb. -- Programs for adults with developmental disabilities in Nebraska will be more focused on finding jobs for them, under new agreements with the federal Medicaid program.Previously, the state of Nebraska paid agencies working with adults with developmental disabilities only for the time they were working face to face with a client, said Jodi Fenner, director of the state's Division of Developmental Disabilities.
Now the state can pay for the legwork agencies take to create job opportunities for adults with developmental disabilities, under new agreements.
The new rules focus on employment first and encourage agencies to move beyond segregated settings.

Temple Grandin Offers View of Autism

An interesting Q & A with Temple Grandin, a member of the YAI Autsim Center's Advisory Board, from the San Francisco Chronicle.

Temple Grandin has written best-selling books and revolutionized livestock slaughterhouses. She is a professor of animal science and an activist, and a recent movie about her life starred Claire Danes. And, Grandin is autistic.
Grandin began talking in the 1980s about what it meant to live with autism, opening the door to a closed world. For the first time, it was possible to glimpse what it was like to be extremely sound or light sensitive, to feed on repetitive behavior but thrive under new experiences devoid of surprises.
Grandin, 62, was in the Bay Area last week, dividing her time as her life work is segmented - between animal welfare and autism. Grandin, who estimates that more than half of the cattle in the United States and Canada are now handled in equipment she designed, visited a Marin County dairy. The next day, she spoke at a luncheon in Novato for Matrix, a nonprofit providing support to families with children on the autism spectrum.
In an interview before the luncheon, Grandin offered advice to parents, talked about her work with animals, and spoke of how her own developmental challenges became assets.

Overcoming Challenges and Growing Up With Autism

Wonderful story from KABC-TV in Los Angeles. Hopefully, more media will focus on stories about the abilities of individuals on the autism spectrum -- and hopefully not just during Autism Awareness Month.

LOS ANGELES (KABC) -- Growing up through your teenage years is hard enough, but for those with autism, those challenges are multiplied. But one young man showed me how he turned those obstacles into opportunities, and has a lot to share about growing up with autism.
The acting, singing, and music in a unique musical are all thought up on the fly.
"'Zombience' is a zombie improv musical. The audience throws out the story setting and the cast relies on their 22-year-old musical director Dave Beukers to stir their creativity."
"He knows where we are and can feel where we are on stage," said Jayne Entwhistle, a performer. "He zones right in and plays exactly what's needed."
Dave has autism. He plays five instruments and can compose anything you throw at him.

Autism's Impact on Grandparents

Great story from NPR's All Things Considered about how children with autism affect their grandparents. You can read the story (link below) or listen to it.

Having a child with autism can turn parents' lives upside down. But it can also profoundly affect the lives of grandparents, according to an online survey by the Interactive Autism Network (IAN).
Preliminary results from the survey of 2,600 grandparents found that many of them responded to a grandchild's diagnosis by changing everything from where they lived to how they spent their retirement savings.

Enjoying Life in the Community

SAN DIEGO — People with severe developmental disabilities need around-the-clock care. For decades, state institutions were thought to be the best option. In recent years, though, moving people into residential neighborhoods has emerged as the way to go.
In Chula Vista, one program provides a home-like environment for people who need constant care.
Four adults who have severe developmental disabilities live here. All of them suffer from cerebral palsy. Some also have intellectual disabilities. None of them can walk or talk.
"Most of them have been institutionalized their entire life," Carrol Ames, a nurse at the residence, points out. "So for them to be able to be in the community and have a life like the rest of us would, it's just really, I mean, what's the point in living if you can't enjoy what's around you?"

Filling Workplace Needs

Do you need a worker who pays attention to detail? Who will do tedious data entry job? Who won’t waste time gossiping?
You might find that you need someone with autism or Asperger's Syndrome.
This is National Autism Month. Advocates have geared up to share sobering statistics about the increasing numbers of children with the diagnosis.
Adults with autism or its milder form, Asperger’s, have a hard time finding jobs now. What will the jobless rate be for that group when — if current statistics are correct — the 1 in 110 children who have autism try to become employed?
"As it is now, lots of people with autism or Asperger’s are looking for full-time jobs, but their gifts are not recognized," says Sean Swindler, director of community program development at the Kansas Center for Autism Research and Training. "Our challenge is finding jobs that fit them."

Boston Develops Autism App

BOSTON -- Michael Duggan was overturning a table of trophies and jamming his hands into a celebratory cake at a sports banquet for disabled youths several years ago when he met Boston Mayor Thomas Menino. The two hit it off. Now, the 19-year-old Roslindale man and his family are teaming up with key players in Boston City Hall to improve the lives of people with autism, a disorder that robs people like Michael of normal linguistic and social abilities.
Boston, like other cities, is creating computer applications to improve the delivery of basic services, such as alerting public works about potholes. But the most dramatic technical breakthrough at City Hall might come in the field of human services — an iPhone application for people with autism. The app, which Menino aides are helping along, is cheaper, less socially ostracizing, and more effective than other so-called “alternative and augmentative communication’’ devices that rely on symbols, line drawings, and cartoon images.

Company That Makes Communication Devices Plans IPO

I know so many people who have used this company's devices and it is truly amazing how it can give children and adults with disabilities a voice.

SEATTLE — DynaVox Inc., which makes special education software and devices for people who are unable to speak, is looking to raise about $150 million in an initial public offering this week.
DynaVox, based in Pittsburgh, plans to use some of the proceeds from the IPO to buy equity interests in the business from existing owners, including members of its senior management.
About 82 percent of DynaVox's revenue comes from its speech generating technology business. The company makes a line of devices used by people who cannot speak, such as people with Lou Gehrig's disease, strokes or traumatic brain injuries, and children with cerebral palsy or autism.

Autism Challenges American Science to Seek Cure

The struggles of parents and children coping with autism was in focus again when an 11-year-old autistic girl in Florida was found Tuesday in a swamp, incredibly four days after going missing.
Her story had a happy ending, but for millions of children, many challenges remain, CBS News Correspondent Mark Strassmann reports.
Autism is a brain disorder, typically diagnosed when a child is 2 or 3. Among Americans, it has skyrocketed 600 percent over the last two decades from 1 in 1,500 kids in the 1990's to 1 in 110 kids today and 1 in 70 boys.
Part of the solution may come at Children's Hospital of Philadelphia. There, a lab's testing the DNA of autism in a revolutionary way.
Dr. Hakon Hakonarson is the hospital's director of the Center for Applied Genomics. He's found two-thirds of autistic people share a certain gene mutation.
"If I was able to fix this gene or eliminate it, how many autism cases would then go away?" Hakonarson asked. "That is as high as 15 percent - one-five - 15 percent of cases."

Florida Bills May Jeopardize Services

AVON PARK, Fla. - The more than 300 Floridians receiving coverage through the Developmental and Disability Home and Community Based Waiver may see funding for their treatment cut if a House and Senate bill is passed during the ongoing legislative session.
People like Jan Feltner, who's had peace of mind knowing her behaviorally disabled 16-year-old daughter Ashley, was receiving the help she needs at Carlton Palms, a center that treats extremely challenging behavioral problems in Mount Dora, are devastated by the news.
The House and Senate Bill (HB 5001 and SB 2700, respectively) would put a $120,000 annual cap for tier one funding instead of putting no limits on the funding, like it is now.
The waiver system categorizes clients in tiers from one to four. Tier one is the most severe level of developmental disability within the waiver program.
According to Carlton Palms attorney Harlow Middleton, $120,000 is not enough to cover the expenses for tier one treatment

Guilt and Uncertainty of Autism

DOTHAN, AL -- Rhonda Kelley’s twin boys were 5 years old before they said “momma.”
But even before then she knew something was wrong with their development.
The boys are now 11 years old. A single parent, Kelley has dealt with her share of nasty looks and comments from other people who can’t understand her sons’ behavior and blamed it on lazy parenting or spoiled children.
“You almost get tired of apologizing for autism,” she said.

Metal Shavings From Swings a Danger to Children With Autism

Children with autism are often calmed by riding on a swing; some do it for hours every day. But doctors are warning of a serious hazard that can occur when wear and tear causes small metal fragments to peel from the suspension apparatus and fall into children’s eyes.
Though medical treatment is required, the source of the foreign body in the eye is often not apparent, according to a paper in the December issue of The Journal of the American Association for Pediatric Ophthalmology and Strabismus.

Study Ranks Virginia Among Worst in Serving People With Disabilities

A study released Tuesday lists Virginia as one of the 10 worst states in the country in serving people with mental and developmental disabilities in home-like settings.
The study – The Case for Inclusion – is an analysis by the United Cerebral Palsy organization on the use of Medicaid dollars in supporting the disabled in community or home-like settings.
Virginia ranked poorly because of its high number of residents who live in state institutions rather than community homes, its long waiting lists for services, and the percentage of dollars spent on institutional care rather than community services.

Autism Doesn't Stop This Eagle Scout

BLOOMINGTON, Minn. -- Like 1,029 other Minnesota Boy Scouts, Joe Keely earned the rank of Eagle Scout last year.
At the Many Point Boy Scout camp near Park Rapids, he was feted with the traditional Court of Honor ceremony: candle-lighting, reciting of the Eagle pledge and awarding of the Eagle badge.
There was chocolate cake. Joe's mom cried. All in all, a typical Eagle ceremony, except for this: Joe Keely is autistic.

Florida Girl With Asperger's Syndrome Rescued From Swamp

WINTER SPRINGS, Fla. -- An 11-year-old girl with Asperger's syndrome was being treated Tuesday for insect bites and dehydration in a Florida hospital after spending four days in alligator-infested woods and swampland.
Rescuers and other law enforcement officials carried Nadia Bloom out of the woods in a sling more than three hours after rescuer James King called 911 to report he had found her.
King, 44, of Orlando, Fla., was a volunteer searcher who is a member of Metro Church, where the child's family worships.
Nadia was covered in bug bites, her feet were waterlogged, and she was dehydrated, officials said. She was not wearing shoes when she was found, said officials, who described her as being in good condition.

Florida House Panel OKs Private Companies Managing People on Medicaid

TALLAHASSEE - A House panel voted overwhelmingly on Monday to let private companies manage the care of nearly all of Florida's 2.7 million Medicaid beneficiaries.
Some groups warn, however, that a one-size-fits-all approach could harm people with special needs.
The expedited bill cleared its only House committee stop on a vote of 16-1 and hits the chamber floor next.
The plan's architects, Republican Reps. Denise Grimsley and Dean Cannon, say they want to eliminate the "patchwork" system of carve-outs and exemptions that make up Florida Medicaid -- a $19-billion program expected to grow to $28 billion by 2014-2015

Study Uses Blood Test to Detect Autism and Drug to Reverse It

A new discovery raises hope that autism may be more easily diagnosed and that its effects may be more reversible than previously thought. In a new study appearing online in The FASEB (Federation of American Societies for Experimental Biology) Journal, scientists have identified a way to detect the disorder using blood and have discovered that drugs which affect the methylation state ("DNA tagging") of genes could reverse autism's effects. This type of drug is already being used in some cancer treatments.
"As the mother of a now 22-year-old son with an autism spectrum disorder, I hope that our studies as well as those of others, will lead to therapies that are designed to address specific deficiencies that are caused by autism, thus improving the lives of affected individuals," said Valerie W. Hu, Ph.D., one of the researchers involved in the work from the Department of Biochemistry and Molecular Biology at The George Washington University Medical Center in Washington, D.C.

College Grant a Boost for Autism Teaching and Research

New Jersey has one of the highest rates of autism in the country, and a $550,000 federal grant to Caldwell College will help ensure that more teachers learn how to recognize and teach children with the disorder.
The funding, announced during Autism Awareness Month, is a reminder that not all federal budget earmarks are for bridges to nowhere. In this case, the bridge is a program that can lead autistic children out of their isolation.

Grandparents Key In Helping Children With Autism

BALTIMORE (UPI) -- About one-third of U.S. grandparents of a child with Autism Spectrum Disorders (ASD)say they were first to raise concerns, a survey indicates.
The Interactive Autism Network, an online autism research project, collected information from more than 2,600 grandparents of children with Autism Spectrum Disorders. The survey found about 11 percent reported living in the same household as their grandchild with ASDs and another 46 percent live within 24 miles.

For Artists With Disability, a Time to Shine

KETTERING, Ohio — Jordan Smith beams when he begins to talk about photography.
"It calms me," he says when asked about his passion. "I can go outside and be with nature, and that also calms me."
Smith, 18, is one of 35 artists whose work is represented in the "Art & Soul Exhibit" that kicks off with an opening reception at the Town & Country Fine Art Center Friday, April 9.
All 40 pieces of artwork on display are done by artists with developmental disabilities, including autism and Down syndrome.

Kansas Supreme Court Rejects Legal Challenge to Budget Cuts

TOPEKA -- The Kansas Supreme Court Thursday refused to get involved in a fight over cuts to services for the developmentally disabled.
Parents of Kansans with developmental disabilities and a coalition of service providers sued the state last month, challenging recent legislative budget cuts to services for the disabled.

News Autism Study: Science or Nonsense?

Interesting piece from Peter Lipson, a practicing physician, on Forbes.com's health care blog.

Bad medical ideas often start with good intentions. Most doctors are interested in preventing and treating disease, and some diseases are particularly challenging. Some rise to this challenge, forming clever hypotheses and finding accurate ways to test them, but others aren't so successful. Sometimes, hypotheses are too implausible to be worth spending much time on. Sometimes, the method used to test a hypothesis is simply not valid.
This story begins on the website Age of Autism. AoA is one of the homes of the antivaccination movement and gives a lot of time to those who still believe that vaccinations and other "toxins" cause autism. The site is full of remarkably paranoid rants. When Chicago Tribune journalist Trine Tsouderos won an excellence in health care journalism award, AoA accused the CDC and Trib of having "bought" the award. They are boosters of every unproven and implausible "treatment" for autism, such as chelation, hyperbaric oxygen, and chemical castration through lupron injections. Recently, they provided a platform to Dr. Andrew Wakefield, the physician whose Lancet paper drawing a link between autism, vaccinations, and gut disorders, was formally withdrawn by the journal's editors.
So it came as no surprise to see one of their writers hyping a study in progress that is testing oral enzymes for the treatment of autism.

TV Review: Autism Is Another Thing Families Share

Normally, when you reach the end of a documentary and say to yourself, “I’m not sure which character that film was about,” it’s a bad thing, a sign of unclear writing and poor execution. But in the case of “Dad’s in Heaven With Nixon,” Tuesday night on Showtime, it’s a testament to how rich this bittersweet tale is.
The filmmaker, Tom Murray, sets out to tell the story of his younger brother Christopher, now 50, who suffered oxygen deprivation at birth and was eventually given a diagnosis of autism. That story takes him back to his childhood and the family’s seemingly idyllic life on Long Island — a home on what became some of the most valuable land in the area; summers on the beach — which leads him to explore how that life was shattered.
An old maxim says that God never sends you more than you can handle, but Mr. Murray’s father, Thomas E. Murray II, disproved it. “He just couldn’t wrap his mind around the fact that he had a neurologically damaged child,” his wife, Janice Murray, recalls of her husband. “There was absolutely no grip on reality. Absolutely none.”

Review of Low Wages For People With Disabilities Raises Concerns

As a senator weighs congressional hearings on a law allowing workers with disabilities to be paid less than minimum wage, employers are worried that a change could force them to downsize.
Organizations like Goodwill often pay those with disabilities far less than minimum wage, which is allowed under federal law if employers obtain a government certificate. The law is intended to account for the slower pace with which some people with disabilities might perform a job function. Workers in these situations are paid according to their productivity.
Now, Sen. Tom Harkin, D-Iowa, wants Congress to take a hard look at the the law and its application to ensure that people with disabilities aren’t being taken advantage of.
That has some providers for adults with disabilities concerned, fearing a change in the law could leave people out of work because there simply isn’t enough money to pay all employees minimum wage.

Click here to read the full story from the Cedar Rapids (Iowa) Gazette.

Wellness Program Gets People With Developmental Disabilities Moving

BOSSIER CITY, La. -- Dennis McCaskill is stepping and stretching three days a week at a new exercise program for developmentally disabled adults.
Evergreen Presbyterian Ministries, a Haughton-based nonprofit organization that serves the developmentally disabled, started an informal exercise program in 2009. It's using grants totaling $35,000 to expand the exercise opportunities and add nutrition education.
A U.S. Health and Human Services study of disability and health between 2001 and 2005 found that 1 in 3 disabled people was obese, compared to 1 in 5 people without disabilities. The study included people with physical, mental and emotional challenges.
Another study showed that among adults with Down syndrome, 45 percent of men and 50 percent of women were overweight, said Kathy Kliebert, assistant secretary of the state Office for Citizens with Developmental Disabilities.

Student Mentor Helping Others With Disabilities Make Transition to College

STAATSBURG, N.Y. -- Even as she studies to be a special-education teacher, Kendall Wolven is being honored for her work helping those with developmental disabilities make the transition into the college community.
She has been nominated for the annual Student Employment Award for her work in the Diversity, Responsibility, Inclusion, Vision, and Experiential Learning (DRIVE) program. After becoming friends with students in the program during her freshman year at Keuka College, she knew she wanted to take part in it, said Wolven, 20.
Since July 2008, she has been peer mentoring in the program, which is a collaboration involving Penn Yan Central School District, Yates ARC and Keuka College that provides students with developmental disabilities access to post-secondary education.

Puppy Watches Over Children With Autism

(CNN) -- It was the dog trainer's honesty that won Lisa McMillan over.
When McMillan asked the trainer whether she was able to train a dog to assist with her autistic twin boys, the dog trainer said, "I don't know anything about autism."
The mother did. And Kelli Collins knew how to train dogs. Together, they would train and raise a puppy to be a companion to the then-3-year-olds, Eric and James. Collins would work with the puppy, Caleb, on learning the boys' scent so he could find them when they bolted. He soon would learn to comfort them, almost instinctively, when they needed a friend.

World Autism Awareness Day

Not only is it World Autism Awareness Day, it's also Autism Awareness Month. Be sure to watch the U.N. Video in this piece from Huffington Post.

World Autism Awareness Day 2010 is being celebrated today, April 2, 2010, worldwide.
The United Nations adopted a resolution on Dec. 18, 2007 declaring April 2 World Autism Awareness Day. The inaugural celebration on April 2, 2008 included 20 participating countries.
The U.N. notes that World Autism Awareness Day is meant "to highlight the need to help improve the lives of children and adults who suffer from the disorder so they can lead full and meaningful lives."

Early Intervention Change To Involve Parents

NEWARK, N.J. -- In the past eight months, the Licking County Board of Developmental Disabilities' has drastically changed its early intervention program.
Known as evidence-based early intervention, the new program is based around parental involvement.
With the former early intervention program, children would work with therapists, either at home or at the E.S. Weiant Center. Some children went to several therapists, based on their needs.

"It was all skill-based. There was an agenda, and it wasn't based on the families," Buehler said. "We were treating the child sort of splintered. You might have four people addressing the different parts of the child."

Now, each child is assigned a service provider who can best address his or her needs. The service provider comes to the child's home or another environment where the family is comfortable.

Autism's Impact on Family

A new study suggests a trend toward developing hyperactivity among typically developing elementary-school-aged siblings of autistic preschoolers and supports the notion that mothers of young, autistic children experience more depression and stress than mothers with typically developing children [Focus on Autism and Other Developmental Disabilities, 25(1): 37-46].
While the impact on older siblings was not statistically significant, the trend may indicate the presence of symptoms associated with broader observable autism characteristics seen in previous studies, according to Laura Lee McIntyre, PhD, a professor and director of the University of Oregon school psychology program.

"Not My Boy!" Facing Trauma of Autism Diagnosis

In "Not My Boy!", former NFL quarterback Rodney Peete writes about dealing with his son R.J.’s autism. After meetings with teachers and appointments with specialists, the Peetes were soon given their son’s devastating diagnosis: “We think your son in unteachable,” “He’s never going to be able to look you in the eye” and “He’ll never be able to tell you he loves you.” After a period of anger and denial, Peete joined his wife, actress Holly Robinson Peete, in her efforts to help their son. An excerpt.