When Your Brother Has Autism

As Autism Awareness Month comes to a close, a nice perspective from Patty Hastings, a student at Northwestern University's Medill journalism school.


CHICAGO -- One in 110 people is identified as autistic, up from one in every 10,000 in 1990 — the year my brother was diagnosed. Does the increasing prevalence signal an autism epidemic or, simply, that the autism spectrum is too wide?
"It's supposed to be worse than being blind, not being able to communicate," said my mom, Debbie Hastings.
I wouldn’t know because my older brother, William, can't tell me what it's like to be on the spectrum.
National Autism Awareness Month is coming to a close, but families of people with autism are aware of this pervasive disorder 24/7, 365 days a year.

Hope for Treating Intellectual Disabilities

Slouched sideways at his desk in the front row of class, a sneakered foot jittering distractedly, Chase Brown could be any 14-year-old in academic captivity.
As the discussion turns to the American history of slavery, the teacher draws Chase back from his apparent reverie. A classmate has said that Abraham Lincoln freed the slaves. Does Chase agree or disagree?
Chase locks eyes with his teacher. "I agree," he says emphatically.
It is a moment of triumph for Chase, one of an estimated 90,000 in the U.S. who live with an inherited form of intellectual disability known as fragile X syndrome. Only a year ago, he would have fled the classroom, thrown something at the teacher or stayed mute. Last year, he tested below first-grade level in all academic domains.
Impulsive, distracted and quick to boil over, he seemed incapable of learning.

Saving a Connecticut Training School Land

As a Connecticut resident, I think it would be wonderful to maintain the farmland and provide work opportunities for people with disabilities. Anybody else on board with this? Maybe I should call the Governor's office.

In about a decade -- maybe sooner -- the state and the town of Southbury are going to have to wrestle with the problem of what to do with Southbury Training School.
The school, at its peak, was a self-contained and self-sufficient residential center for people with mental disabilities.
It served more than 1,000 residents. Its farms and orchards provided them with the food they ate.
Today, about 400 people live there. It's an aging population. The state Department of Developmental Services stopped admitting people to the school in 1997.
As the residents die -- 25 or 30 a year -- the numbers will make it inevitable. The school will close.

Church Begins Welcoming Kids with Autism

Halfway through a Mass in Caldwell College's campus chapel, Chase Keith rose to his feet for one of the most challenging parts of a challenging day. It required the boy from Basking Ridge, N.J., to offer his hand to strangers in the traditional sign of peace. With his mother whispering in his ear and guiding his arm, the 7-year-old stuck out his small hand toward a fellow parishioner. "How you? Peace," Chase said.
Afterward, his mother slipped him a Goldfish cracker as a reward for his correct behavior. Chase had gone through months of intensive training with a specialist to get to this point — where he could sit through a Catholic Mass with his family. Chase, who has autism, is among a growing number of children with developmental disabilities who are being welcomed at religious services.

HMOs Await Medicaid Recipients in N.J.

I'm probably in the minority, but I don't believe that government has the right to tell people what doctors they can and can't see. Perhaps that's why the Medicaid Reform committee in New York State and others are recommending the Patient-Centered Medical Home for individuals with developmental disability. This model of care ensure coordinated care with members of a health care team, which includes not only the doctors, specialists and other clinicians but the patients and their families.

TRENTON, N.J. — Not content to wait for the state budget to pass in late June, the Department of Human Services is alerting about 200,000 Medicaid recipients — many with developmental or mental disabilities — that they will be required to enroll in an HMO.
Gov. Chris Christie's administration anticipates the move will save about $41 million over the budget year that begins July 1.
But at least one advocacy group is worried people with complicated medical histories will be forced to find new doctors or new drugs, disrupting their care.

Vermont Ranks No. 1 in Medicaid Services

Vermont offers the best Medicaid services for individuals with intellectual and developmental disabilities while Mississippi provides the worst, according to an annual ranking released Thursday.
The 50-state analysis from United Cerebral Palsy compares services offered across the country, giving preference to states where more individuals are served in the community as opposed to institutions.

Opinion: Don't Warehouse People with Disabilities

Guest column in The Record of Bergen County, N.J., by Lowell Arye, executive director of the Alliance for the Betterment of Citizens with Disabilities in Hamilton.


The urging of some to halt plans to close Vineland Developmental Center would move New Jersey in the opposite direction of 30 years of public policy toward community living for people with developmental disabilities.
In his budget, Governor Christie boldly announced the closure of a state developmental center over the next two years. New Jersey has not closed a developmental center since 1998, when it shut down North Princeton. It is far behind the national trend of deinstitutionalization.

Parents Urge Lifeline for Autism Program

PROVIDENCE, R.I. — The state child welfare agency’s plan to eliminate $1 million in its budget next year for a program to educate children with autism drew emotional testimony from parents of children afflicted with the disorder at hearing Wednesday before the House Finance Committee.
Claudia Swaider, the mother of two boys with autism, held up a photograph of them as she recounted their ordeal. Her son, Adam, used to spiral out of control in a regular public school, punching his head through walls and hitting staff, until the public school administrators "threw up their hands."
Her family was in turmoil; her marriage fraying. Then, she and her husband found out about The Groden Center, a Providence-based school and residential treatment center for children with autism and other developmental disorders.
"Groden was the only one able to take a chance on both boys," Swaider said, choking back tears. "They took my family, which was being slowly destroyed, and gave Adam and Matthew the chance of a lifetime."

Study: Easy Survey Can Detect Autism Early

Call it mother's intuition. Linda Powell's only son Samuel was just two months old when she said she knew something was wrong.
"I had a colorful mobile over the changing area and he didn't focus on it at all," Powell said. "Usually by that time they're able to see some colors. I even switched to a mobile with all these different vibrant colors, and he still didn't focus."
That wasn't the only red flag. Samuel made long humming sounds instead of the "da's" and "ga's" of babbling babies his age. And although he liked toys, he didn't play like his curious peers.
Despite the warning signs, it would be three years before Samuel's unusual behavior had a name: Autism.

Graduation and an Uncertain Future

ALEXANDRIA, Va. -- In the next 15 years, an estimated 500,000 autistic children will cross a major hurdle and graduate out of school systems in the U.S.
Sadly, this won’t bring the gold medal reward most parents of autistic children hope for. Instead, the accomplishment will bring these families to the start of a new obstacle course that may prove more challenging than the one they just worked their way through.

Making Sense of Social Contact

CORVALIS, Calif. -- Julie Balderston’s clients, whether they be in school settings, college, an office or just at home, often feel as if they’re struggling to fit in.
Part of those struggles, she said, involve communication roadblocks. Her clients often don’t know how to bridge the gap to communicate better with teachers, colleagues and family members.
That’s where her Social Communication Clinic comes in.

MacNeil's 'Autism Now' Series Renews Debate on Link to Vaccines

It's been nearly 16 years since Robert MacNeil stepped down as co-anchor of public television's much-celebrated "NewsHour." Who would have thought his return to the show in recent days would bring not just a measure of acclaim but also a charge that the famously evenhanded newsman has been "reckless and irresponsible"?
That's been the response to MacNeil's six-part "Autism Now" series on PBS, an assignment that brought the retired newsman back into the fold to help him, and others, better understand people like his grandson, Nick, who is autistic.
Here's MacNeil's response from last night's PBS Newshour.

A Child Regresses. Is Autism to Blame?

From the Consults Blog at The New York Times, Dr. Fred Volkmar answers a reader's question on autism.

If a young child suddenly stops speaking, is autism to blame? That is among the questions recently posed by readers of the Consults blog. Here, Dr. Fred Volkmar, director of the Yale Child Study Center, explores the issue of regression in children and the diagnosis of autism.

Support for Parents of Children with Autism

BRONX, N.Y. -- Luz Holguin felt alone when, about nine years ago, her autistic son was tormented in a combined class of special needs students and children with behavioral problems.
It's a classic story, doctors and activists say, in areas where people don't really understand the disorder, which impedes social interaction and communication. But one doctor is actively trying to reverse the trend.

Married to a Cause

MEAD, Colo. — Forget 1,200-thread-count linens and fine china.
In lieu of wedding gifts, Darrin Jensen and Michelle Fury are asking for donations to help them meet their fundraising goal for the Courage Classic, a three-day, 157-mile bike tour in July through Summit County to benefit The Children's Hospital in Denver.
"It's very meaningful for the two of us because i'ts a cause we both believe in," said Fury, 40, a Denver resident and yoga therapist at The Children's Hospital.
Fury said her nearly five years at the hospital have shown her the difference a psychotherapeutic approach can have on children.
Her fiance also has a connection to the hospital.
The youngest son from his previous marriage, Andrew, has cerebral palsy.

Books By and For Children with Autism

April is Autism Awareness Month, and given the increase in the number of children with autism spectrum disorders (the rate is in constant dispute, but some estimate that A.S.D. affects as many as 1 in 110 children), a stack of new books for and about autistic children is to be expected.

Pediatricians Urge Better Toxin Regulation

The U.S. needs to do a better job protecting children and pregnant women from toxic chemicals, says a policy statement out today from the American Academy of Pediatrics.
The group says children's developing brains and bodies are far more vulnerable than adults' to toxins. And while pediatricians typically spend more time in the clinic than on Capitol Hill, the policy's authors say they felt compelled to advocate for patients who can't defend themselves.

Autism Takes a Toll on Siblings

EL PASO, Texas -- There is no question about it -- Amarani loves her older brother, Jimmy. "I love everything about my brother," said Amarani, who, her mother says, is 5 years old going on 14. "I like playing board games like Monopoly, Monopoly Junior and Operation with him. I like playing Barbies versus wrestlers with him, too."
However, there are times when Amarani, whose family and friends call her "Mamas," leaves her brother alone.
"Sometimes my brother needs a break," she said. "I leave him alone until he feels better. Then he calms down and we watch cartoons and movies, and it's all better."
Amarani is wiser and more mature than her age would suggest.

Wrestler with Autism Advances to Nationals

SCRANTON, Pa. -- When Jeremiah Oakes goes to school at John Audubon Elementary School, he likes to wear his University of Iowa Hawkeyes wrestling sweatshirt. If you ask him, he can rattle off his best moves - the fireman's carry and a double-leg takedown, for the record.
And as for his numerous trophies and medals, the 10-year-old can tell you in which tournament he won an award, what the score was and how he fared in the bout.
But what he doesn't mention is that he accomplished all these feats - including, most recently, qualifying for the Eastern National wrestling championships in Maryland this coming weekend - in the face of a diagnosis of autism.

Learning Life Skills While Helping Others

TUMWATER, Wash. – They emptied garbage bags filled with plaid dress shirts, hooded sweatshirts, jeans, sweaters, mittens and various other clothing items.
White, gray and khaki clothes went on one table. Medium colors, including blue, red and orange, went on another. Dark clothes, mostly black and brown, were separated into a third pile.
Tenth-grader Michael Berman, 16, asked about dark-green clothes. After all, they aren’t a medium color, but they aren’t as dark as black or brown, either.
And that’s when he and his classmates in Tumwater High School’s Life Skills class learned about one of the universal mysteries in laundry – right up there with disappearing socks. Sometimes, a color can go in either pile; it’s a judgment call.
Life Skills is designed to help special-education students learn daily tasks, such as riding a bus and household chores, according to teacher Elaine Robertson.

A Day of Activities and Opportunities

UNITY, Maine - Tonya Emery sat in her wheelchair inside a gymnasium Saturday afternoon, smiling broadly as she swiped her brush and dabbed blue paint onto a tree-stump palette.
Joined at Unity College by 10 other adults with developmental disabilities, the Portland woman said she was having so much fun.
Also on the agenda over the weekend: tie-dying T-shirts, a campfire, rockwall climbing, karaoke and the "flying squirrel" activity involving lifting people into the air with a harness and ropes.

Unlocking Mireya's World

DENVER -- Her name is Mireya. She is 3 years and 3 months old. She has fine black hair, a thing for "Handy Manny" cartoons and one of the most prominent last names in Colorado. Many nights, Mireya Salazar will not fall asleep unless her feet are touching her mother and her head is touching her grandmother.
It's part of an elaborate bedtime ritual in which she must place her pillow with the pink checkerboard and butterfly pattern just so, in the middle of the bed.
She has other routines, other rules. Every door in the house must be closed. If they are not, she will slam them shut. She won't eat a broken Cheerio or pasta that is not white. She can seem more interested in a pink balloon than in her father, more fascinated with a blank space in the distance than in "Papa Ken" — her grandfather, Interior Secretary and former U.S. Sen. Ken Salazar.

Special Olympian Aims for Gold in Athens

GILBERT, Ariz. — Alexander Hayes doesn't like to lose.
So when the 24-year-old Special Olympics athlete heads to the summer games in Athens, Greece, June 24-July 4 this summer, he plans to win the gold.
Nothing else will do.
That isn't really surprising because most autistic children — and adults — have an usually tough time with not winning.

Children with Autism Hit the Surf

Happy Easter, Happy Passover . . . hope I haven't missed anything. This is a wonderful story from Juno Beach, Fla., a town I covered many moons ago as a reporter for the Palm Beach Post. Wish they had this back then; would have been a great assignment. Though I do remember covering a sunrise Easter service on the beach in Jupiter, not far from Juno Beach. Be sure to watch the video. Enjoy.

JUNO BEACH, Fla. -- The smiles say it all, 200 autistic children experienced the joys of surfing with the help of volunteer surfers.
The kids say that it's, "so fun. It's like a party."
Each year Surfers for Autism puts on events along the coast of Florida and Georgia to help kids with autism. The goal is to change their lives simply by teaching them to catch a wave.

Employment Program Comes Up Roses

HARTFORD, Conn. -- Roses for Autism, a training and employment program for people on the autism spectrum, has been named the 2011 Business of the Year in Connecticut.
The organization was recognized at the state Capitol and given the award by the Connecticut General Assembly on April 4.
The goal of Roses for Autism is to teach people with autism the skills they need to be successfully employed in the community.

New Hampshire to Inform Those Who May Lose Services

CONCORD, N.H. -- State officials plan to tell people with developmental disabilities next month if they would lose their services under the state budget proposed by the House.
The budget significantly cuts spending on services for people with developmental disabilities, such as money to help make their homes accessible or to provide respite care that allows parents who are constantly with their children time to run errands or tend to other needs. Senate budget writers could insist on restoring some of the spending, but with little more than two months until the new fiscal year, state officials have already proposed tentative criteria to determine who would continue receiving services and who would be cut off.

Opinion: Maybe the Dumbest Cut of All

RALEIGH, N.C. -- The House budget that could be approved in the next two weeks would cut more than a billion dollars in health and human services spending over the next two years, more than $710 million of it from Medicaid. That's a bad idea for several reasons.
The deep reductions in Medicaid funding means fewer services for people who need them, lower reimbursements for the medical professionals who provide them, and a loss to the state of more than $2 billion in federal Medicaid funding, since the federal government matches state Medicaid expenditures 2 to 1.

Making Haircuts Easy for Kids on Spectrum

EL SEGUNDO, Calif. -- Some parents of children with autism say getting their child a haircut is such a traumatic experience that they often just cut their kid's hair in their sleep. But it doesn't have to be that way. A new haircutting guide gives parents the tools they need to help guide their children through the experience.

Lack of Services for Adults with Autism Creates a Public Health Crisis

Bravo to Robert McNeil and his series on PBS Newshour this week. He has reaffirmed what so many of us in the field have known for years -- autism doesn't just affect children. Hopefully the media will follow his lead and recognize that there are so many adults across the world in need of services. Funding is needed for early intervention, as well as programs to support adolescents and adults on the spectrum.

Although federal law mandates educational services for children with autism, there are virtually no support services provided once they become adults. In the fifth report in his Autism Now series, Robert MacNeil profiles a young man in New Jersey -- and his family -- as they face an uncertain future for him.

Lady Gaga Apologizes for 'R' Word

Lady Gaga's got yet another bold statement to make: An apology.
The pop star came under fire after she dropped the "R bomb" -- calling plagiarism accusations against her "retarded" -- in an interview.
"I consider it part of my life's work and music to push the boundaries of love and acceptance. My apologies for not speaking thoughtfully. To anyone that was hurt, please know that it was furiously unintentional. An honest mistake requires honesty to make," Gaga, 25, said.

Cruel Cuts May Uproot Men From Home

GASTONIA, N.C. -- After years of battling the developmental disabilities they were born with, Eric Falls and Clint McManus have found a measure of ease in the local group home they have shared since 2004.
The quiet, stable environment with round-the-clock attention has done for the men what previous years spent living in state institutions could not. And yet a complex state funding issue may soon force them to move back into a more crowded special needs facility, despite the fact that taxpayers could end up spending more for the men’s care if that happens.

Store Provides Good Deal and Opportunity

CRANFORD, N.J. -- Green Sports NJ is a store that sells donated new and used sports equipment. Products sold at Green Sports will be at least 25 percent less expensive than new equipment at the average sports equipment retailer. And the store employs individuals with intellectual and developmental disabilities to learn all aspects of the business.

Bronx School Shines in PBS Autism Report

A Bronx school for children with autism stars on television tonight.
A PBS "NewsHour" segment at 7 p.m. features Public School 176X in Co-op City. It serves nearly 700 children with the disorder.
Part of a "NewsHour" series on autism hosted by legendary news anchor Robert McNeil, the segment compares PS 176X with a small charter school in Manhattan that boasts one teacher for every student.

Link Seen Between Genes and Autism

While the genetic underpinnings of autism are enormously complex, new DNA research is honing in on sets of abnormal genes that may play a role in the disorder.
Researchers from the Center for Biomedical Informatics at The Children's Hospital of Philadelphia (CHOP) said that, while other scientists have theorized about a connection between gene mutations, impaired brain development, and the onset of autism, their work is the first to establish the link.

Wakefield Fights for Reputation and Theory

As people streamed into Graceview Baptist Church in Tomball, Tex., early one Saturday morning in January, two armed guards stood prominently just inside the doorway of the sanctuary. Their eyes scanned the room and returned with some frequency to a man sitting near the aisle, whom they had been hired to protect.
The man, Andrew Wakefield, dressed in a blazer and jeans and peering through reading glasses, had a mild professorial air. He tapped at a laptop as the room filled with people who came to hear him speak; he looked both industrious and remote. Broad-shouldered and fair at 54, he still has the presence of the person he once was: a conventional winner, the captain of his medical school’s rugby team, the head boy at the private school he attended in England. Wakefield was a high-profile but controversial figure in gastroenterology research at the Royal Free Hospital in London when, in 1998, he upended his career path — and more significant, the best-laid plans of public-health officials — by announcing at a press conference that he had concerns about the safety of the measles-mumps-rubella vaccine (M.M.R.) and its relationship to the onset of autism.

Lady Gaga Drops the 'R' Word

Lady Gaga has long been heralded for her civil rights work, but she has outraged a whole new group of fans by using the word "retarded."
During a recent interview, a journalist asked the singer whether she thought her last single Born This Way was a knock-off of Madonna's hit Express Yourself.
Outraged, Lady Gaga replied: "I'm a songwriter. I've written loads of music. Why would I try to put out a song and think I'm getting one over on everybody? That's retarded."

10-Year Wait for Home May Grow Longer

MILWAUKEE, Wis. -- When Jeanne Fehr got word after a 10-year wait that her 31-year-old daughter, Nealy Rothe, would likely get state funding to live on her own, Fehr was thrilled.
Rothe, who has Down syndrome, works a part-time job but would need help managing money, taking the bus and with some chores if she were to move from the Milwaukee home she shares with her mother. Rothe said she is looking forward to having her own apartment.
But that excitement was tempered with Gov. Scott Walker's proposed freeze on enrollments in the state's Family Care program, which helps pay for community care of elderly and disabled people.

N.J. Assemblywoman Seeks Impact Study Prior to Closing Developmental Center

TRENTON, N.J. -- Gov. Chris Christie should halt any plans to close the Vineland Developmental Center in Cumberland County until a new legislative panel has studied the impact on its disabled residents, the chairwoman of the Assembly Human Services Committee announced today.
In a letter to Human Services Commissioner Jennifer Velez who oversees state institutions, Assemblywoman Valerie Vainieri Huttle (D-Bergen) questioned the administration's recent transfer of 59 Vineland residents. Two-thirds of them were sent to one of the six other institutions serving people with developmental disabilities while the remaining residents moved into community housing.

An Historic Day in Jordan

One of the most exciting days not only in Jordan but also in New York City, for the staff of the YAI Network. Yes, this is one of those times where I get to toot our own horn. It couldn't have happened without the support of High Royal Highness Prince Ra'ad bin Zeid, the staff of the Higher Council for the Affairs of Persons with Disabilities, and the USAID.

AMMAN, Jordan -- HRH Prince Raad, president of the Higher Council for Affairs of Persons with Disabilities (HCD), on Wednesday inaugurated two group homes for 12 citizens with intellectual disabilities in Zuhom, Karak.
The homes, which were modelled to suit their residents’ needs, are the first of such developments at the national and regional levels, according to an HCD statement e-mailed to The Jordan Times.
"To provide our citizens with intellectual disabilities the opportunity to live independently is an historic national and regional milestone," Prince Raad said at the inauguration ceremony, noting that this realisation "has long been a personal dream of mine.".
He added that the project is a living example of social responsibility and sound planning between the HCD, the Ministry of Social Development and the YAI Network, noted that the determination of those executing the project made his dream a reality.
Minister of Social Development Salwa Damen, together with representatives from the YAI Network and USAID, which financed the project through the Ministry of Planning and International Co-operation, also attended the inauguration ceremony, the statement said.

Above and Beyond Academics

Beyond Academics gives students with intellectual disabilities more than a college degree — it gives them a chance to live on their own terms.

GREENSBORO, N.C. -- Demario Chandler quickly flips channels, coming to rest on ESPN. Big men, clad only in garish shorts, grimace and grunt at one another. Punches fly as they grapple — big, meaty arms swinging around necks, into ribs. Demario paces excitedly, a grin on his face.
The grin returns when he flips the channel again and catches the weather report. More snow might be on the way.
Minutes later, he ushers a fellow UNCG student into the apartment. They decide to go to the apartment's club house to relax.
"Demario, tell me about your trip to D.C. You went to the White House, right?"
"It was alright."
"What did you do?" the student prompts.
"Talked about jobs."
There's much he doesn't say. The quiet UNCG senior deflects questions with a shrug. The trip was important. He was invited to DC to participate in job shadowing as part of the national Disability Mentoring Day. A workforce he'll soon be headed into.
Demario came to UNCG in 2007 when Beyond Academics launched. The fledgling program sought to provide a rare opportunity to college-age students with intellectual disabilities — the chance to go to college and learn to live on their own, just like their peers.

Barber Educating Public About Autism

OCALA, Fla. -- The floor at Stacy’s Barbershop has a special insert with blue puzzle pieces, and owner Stacy Gerrity-Sansevere is astounded that some customers still don't know what the logo stands for.
"If you are an adult and you don’t know about autism by now — shame on you," she said.
She is so passionate that she is sponsoring an essay contest about autism through the end of April, which is National Autism Awareness Month.
Any child in grades three through eight who enters will receive a free haircut, and the winner will receive free haircuts for the rest of the year. The family of the winner — up to four people — also will receive free haircuts for a year.
Gerrity-Sansevere opened the shop in 2009 and dedicated it to her 10-year-old son, Garian, who has autism. He was diagnosed at 18 months old after his constant babbling became complete silence.

Schools Reach Out to Students with Autism

LAUREL PARK, N.C. -- Lounging comfortably on a park slide, Cameron Poulin rattles the ice in his drink and digs through his Happy Meal box mining for that last evasive French fry. Most days, his mom, Christin, takes him to one of the playgrounds in the Laurel Park neighborhood where they have lived for more than a year.
They chose the subdivision not for its amenities, architectural designs of the houses, or work commutes, but for the school district's innovative approach toward teaching autistic children.

Deeper Cuts, Deeper Pain

ELGIN, Ill. — For the next four years, Elizabeth and Chris Frederick know they will have services for Thomas, their 17-year-old developmentally disabled son.
However, after he turns 21, the South Elgin resident no longer will be eligible to get schooling, his parents said. It is during those school hours that they have at least some respite from caring for Thomas 24 hours a day, seven days a week.
Cuts proposed in Gov. Pat Quinn’s 2012 budget could mean the respite care they now have — and other services for those with developmental delays — could be cut not only for them but for the 5,400 people served by the Association for Individual Development in Kane and Kendall counties.

Research Holds Clues to Causes of Autism

So wonderful to see Robert MacNeil back on PBS NewsHour with his series on autism.

With a record number of children being diagnosed with the developmental disability known as autism, a majority of scientists investigating the causes of the puzzling condition now see complex interactions between genetics and the environment.

Watchdog Agencies May Sue States

WASHINGTON, D.C. -- The U.S. Supreme Court ruled 6-2 Tuesday a watchdog state agency may sue state officials to get information about deaths at state mental hospitals.
Two federal laws offer states money to improve medical care for people with mental illness or developmental disabilities. If a state accepts the funding, the laws require the state to set up a "protection and advocacy" system.

What Would Son Be Like Without Autism?

Laura Shumaker's piece on SF Gate.com, hits a note that many parents have thought quietly about at one time or another.

I called my brother at his office today just to check in, and his son Greg answered the phone.
"Good Morning, Bowhay Investment Group"
My nephew, who is just 2 weeks older than Matthew, is in business school. I'd forgotten that he was also working for his dad. We chatted for a few minutes and as I hung up, I was flooded with a feeling that I rarely let myself feel--regret. What would Matthew be like if he didn't have autism? What would he be doing?

Nursing Homes See Younger Patients

FLORENCE, Ala. -- An analysis of federal data from the Department of Health and Human Services by National Public Radio found people between ages 31 and 64 comprise 14 percent of the nursing home population. That’s up from 10 percent a decade ago.
The trend is playing out in Alabama as well, according to Louis Cottrell, executive director of the Alabama Nursing Home Association.
"We are seeing younger residents who are either disabled or developmentally disabled coming to nursing homes," he said. "I'm afraid we're going to see that number grow."

Seeking Jobs for Eager Workers

LAWRENCE, Mass. — The basement at 1 Parker St. is bustling. About a dozen workers here, all with developmental disabilities, sort hangers into piles of small, medium and large. Others, wearing hair nets, quietly count out 50 styrofoam bowls at a time and put them into plastic bags. A middle-aged man expertly solders wire.
Today is a busy work day at CLASS/ARC of Greater Lawrence - something leaders here would like all the time. A major work contract for the non-profit agency is soon drying up and leaders here are now looking for replacement work for the many disabled adults in the Merrimack Valley and beyond they serve.

Brother Inspires High School Track Star

DUNMORE, Penn. -- As he strides down the home stretch of a distance race, Austin Burling needs only to glance up into the stands to drive himself to push harder.
There, standing in the bleachers at Dunmore Veterans Memorial Stadium is his brother Shane, his Philadelphia Eagles cap pulled down snug, his voice rasping out words of encouragement.
With a wink and a smile, Burling turns up the speed, and has all the motivation he needs to strive for that first place, or that personal-best time.
Shane, now 21 years old, has Down syndrome and though he has never competed at Dunmore High School, ask anybody and they will tell you he is a true member and inspiration to all of the Bucks.
"He's pretty amazing," Austin, a senior, said after sharing an embrace with Shane during the Riverside meet last week.

Opinion: Autism Does Not Define Potential

Thoughtful opinion piece by Todd Drezner of Brooklyn, N.Y.


I'm against Autism Awareness Month. Don't get me wrong — as the father of an autistic son and the director of the documentary "Loving Lampposts: Living Autistic" (tinyurl.com/3dlrgnb), I'm eager for people to learn about and understand autism.
But as I made my film, I met a lot of autistic adults who don't think about autism in the same way the rest of the world perceives it. There's a huge obsession with everything about autistic children today, and amid this clamor, autistic adults are too often ignored. I was interested in what they had to say about themselves.

Autism Strains Children, Families

Deborah Hill didn't know what was wrong with her daughter.
Her birthday party invitations started diminishing. She was getting calls from the Mount Laurel Schools saying that Lauren was hitting other students.
Meanwhile, Hill said, "Lauren was happy; she was oblivious."
It wasn't until Lauren was 12 that the family finally received a diagnosis: Lauren has Asperger's syndrome, part of the autism spectrum.

N.J.'s Priority Housing Wait List at 8,000

TOMS RIVER, N.J. -- Mike Festa is beaten down and losing hope that his son will be all right when he is gone.
It’s evident in the folder overstuffed with hundreds of documents that he keeps in the basement of his Toms River home, in his voice when he dials Trenton searching for answers, in his sigh as he describes the thousands of hours spent in a decade-long fight to find a suitable home for his 35-year-old autistic son, Michael.
Michael is sweet and sociable but subject to seizures and incapable of living on his own. He lives with his parents, who are his around-the-clock caretakers, but who also know they need to find a home that will provide for their son when they no longer can.
"How much time do I have?" asked Festa, who is 61. "I don’t know. My wife and I can pass any time. If we do, Michael becomes an emergency ward of the state, and then they put him anywhere."

Opinion: Life's Lessons From the Front Line

Sandra Houghton is a self-advocate with extensive experience in systems advocacy, human rights and leadership development. She developed the Self-Advocacy Leadership Series, the first program in the U.S. that focuses on communication and social skills to teach individuals with developmental disabilities to become "self-advocates." Houghton currently conducts SALS training seminars at the Massachusetts Developmental Disabilities Council in Quincy

Imagine a childhood without play dates or birthday parties, sleepovers or school dances. Doesn’t sound like much of a childhood, does it? Well, for children with disabilities — developmental and otherwise, it is more often than not, the norm.
Having grown up with cerebral palsy, I know what it feels like to be "different." Even within my own family I felt like an outcast. My brother could do no wrong. My little sister had the looks and the brains. But I was just the disabled kid. I didn’t have the opportunities that my siblings had — no friends, no social experiences.

A Struggle for Acceptance

BRIDGEWATER, N.J. —Actress Marianne Leone, her son, Jesse, and her actor husband, Chris Cooper, were in a French airport, falling backward on an escalator.
Cooper, filming "The Bourne Identity" at the time, had been struggling to accommodate their son's wheelchair on the mechanized stairs. The airport's elevators were out of service, and the 11-year-old boy, who had cerebral palsy, couldn't walk, Leone said Thursday at Bridgewater State University, where she promoted the paperback release of her book "Knowing Jesse: A Mother’s Memoir of Grief, Grace and Everyday Bliss."
The story of the family’s airport debacle reached Jesse's classmates in Kingston, who then wrote letters to mayors, senators and even then-President George W. Bush.
"Dear Mr. Bush, Do you know what happened to my friend Jesse?" Leone recalled one of the letters a student wrote, while she spoke at the university on Thursday.
The classmates' concern that day was a victory for Leone – a realization that her son, finally, was part of his school's community after much strife.

Feds Order Oregon to Boost Special Education Funding or Face Sanctions

SALEM, Ore. -- The U.S. Department of Education has denied Oregon's request to reduce special education funding in light of budget cuts and will cut more than $15 million federal funding to schools if the state doesn't reverse course.
States lose federal special education money if they lower their contribution to those programs without a waiver. Oregon Department of Education officials sought the federal waiver, saying the state faced declining revenue projections throughout the summer, forcing the department to reduce the amount of money supporting special education programs.

High School Coach's Special Tie with Son

FORT COLLINS, Colo. — Rocky Mountain High School baseball coach Scott Bullock never has had to search for his team's character. It was there when the Lobos won the past four big-school titles with skill, class and academic acclaim. They're in the mix for a fifth this spring.
Perhaps that's because Bullock, from age 6, learned to grow up fast. It was then his older brother, Dean, had a diving accident that led to his becoming a quadriplegic. Six months after his brother's accident, his mother died. His brother passed away in January at age 48.
As for his identity, the person Bullock ultimately became as an adult has also been greatly shaped by his son, Tagg, who will celebrate his seventh birthday next month. A short, stocky bundle of energy bound for first grade next year, Tagg was born with Down syndrome.

Parents Weigh In on LaBrie Case

SALEM, Mass. -- As Lynn Tougas followed the trial of Kristen LaBrie, she could not help thinking about her own bewildering years caring for an autistic son. They were tough times.
When he was diagnosed with Crohn's disease, she had to get help holding him down to give him his medication. And though she and his teachers spent months trying to inoculate his fears, practicing with a syringe that had no needle, he still kicked and screamed when he had his blood drawn.
As LaBrie faces sentencing today in the death of her son, Tougas can sympathize with the depression, overwhelmed feelings, and helplessness LaBrie may have experienced when prosecutors say she withheld life-saving cancer treatments for her son Jeremy.
But Tougas said she cannot forgive LaBrie for letting Jeremy die.

Florida Governor Drops Rate Cuts

Hopefully this will come to fruition, but just waiting for the next installment.

TALLAHASSEE -- After taking weeks of heat, Gov. Rick Scott said Thursday he’s withdrawing his order cutting payments to caregivers for Floridians with Down Syndrome, spinal bifida, autism and other developmental disabilities.
Scott confirmed what he hinted earlier this week — during a visit to the state’s Agency for Persons with Disabilities. The House and Senate have agreed to find dollars in their budget proposal to cover the $174 million deficit that prompted his 15 percent rate cut, which he said will be lifted by the beginning of next week.

Where Rider and Horse Share Strong Ties

FORT DAVIS, Texas -- In 1980 Fonda Ghiardi was living with her daughter on a farm outside Sharpsburg, Maryland, where she worked in private practice as an art conservator. Her real passion, however, was horses.
While a student at Penn State University, Ghiardi was able to learn to ride and compete in the sport of dressage and combined training. She was hooked, and after years of competing and training, by the 1990s she was breeding racehorses and her daughter was competing in Pony Club and combined training.
But something was missing in the relationship of rider to horse.
In 1991, Ghiardi's daughter came home one day and said she was tired of the competitive aspect of her riding and the focus on winning, and was quitting. Ghiardi agreed: There had to be some more meaningful way to work with these sensitive, beautiful animals besides the endless goal of riding to win.
Ghiardi started volunteering in therapeutic riding locally and found the experience more rewarding than any of the other horse work she had done.

Autism Is Nation's Fastest Growing Developmental Disability

From Boston, interview with speech and language pathologist Kara Corley from Children's Hospital

It's the fastest-growing developmental disability in the country.
More children will be diagnosed with autism this year than with aids, diabetes and cancer combined.
It's estimated one in 110 children in the U.S. are affected by autism. April is Autism Awareness Month.

Opinion: Return to Bad Old Days?

Another guest column - this time from the Concord Monitor in New Hampshire by Richard Cohen, who along with John MacIntosh represented the residents of Laconia State School and Bill Glahn the state defendants in the lawsuit, which was filed in April 1978 and decided in 1981.

Thirty-one years ago this month, we opposed one another in representing the residents of the Laconia State School and the state in Garrity v. Gallen, the lawsuit challenging conditions at that institution and the lack of adequate, community-based services for people with developmental disabilities.
While the legal interests of our clients diverged, the parties agreed on goals of the lawsuit: to redress inhumane conditions, end years of segregation and develop a system that enabled individuals to live and thrive with supports in the community.
There were parents who were understandably fearful that if the institution closed, there would be no place for their sons or daughters to go. Fears lessened and virtually disappeared as community placements occurred, families saw that individuals were far better off in the community, and state officials pledged to maintain comprehensive community services.
The state's pledge to maintain a community system was based on legal mandates and the fundamental moral obligation of government to provide support to those who need it throughout their lives, an obligation that has transcended political forces in New Hampshire.
Three decades later, this pledge and the mandates from the Laconia lawsuit are threatened by the House budget bills which risk recreating the conditions that led to the suit.

Opinion: Don't Close Doors to Employment

Came across a guest column in The Seattle Times by Karen Williams, a board member for the Washington State Initiative for Supported Employment, a nonprofit dedicated to expanding employment opportunities for people with developmental disabilities. Unfortunately, it could be written for virtually any state. Government needs to hear everyone's story about how budget cuts will result in the loss of critical services for individuals with disabilities. It's not too late to speak up!

SEATTLE -- A crisis, goes the widely used political adage, is a terrible thing to waste. But a crisis can also result in drastic decisions and ill-considered reversals in public policy.
This is part of state budget deliberations, in which the House has proposed a $54 million cut from employment programs for people with developmental disabilities. That amounts to a 40 percent reduction in current programs, which isn't even the worst of it.

Students with Autism Learn to Survive and Even Thrive at College

In many ways, Mark Heim is a typical senior at Colorado State University. He has the kind of smart humor you'd expect from someone who excels in computer science, engineering and math; his T-shirt reads, "Department of Redundancy Department."
But as a student living with Asperger's syndrome, a high-functioning form of autism, the everyday social interactions of college life can be awkward. Heim is part of a new influx of kids with autism who are heading off to college, creating a new demand for college services to help students with autism fit in, graduate and find jobs.

Mom Guilty in Death of Son with Autism

Such a troubling story. Just couldn't ignore it.

LAWRENCE, Mass. -- A Superior Court jury found Kristen A. LaBrie guilty of attempted murder Tuesday for withholding chemotherapy medications from her autistic son, who died of leukemia in 2009.
Prosecutors in the case argued that LaBrie committed murder by withholding potentially lifesaving medications for her 9-year-old son, Jeremy Fraser. The defense admitted that LaBrie knowingly withheld her son's medications, but said she did so only because of their painful side effects.
"It's been a long struggle for everybody including the defendant," Andrew Fraiser, Jeremy's paternal uncle, told reporters outside the courtroom. "It's never a good day to have to go through something like this."

Florida Governor Offers Option to Cuts

Not sure Gov. Scott's request is reasonable, but perhaps some sort of compromise can be reached. Don't think he realizes how devastating his cuts will be to some of Florida's most vulnerable citizens and the people who have dedicated their careers to serving them and their families.


TALLAHASSEE -- Florida Gov. Rick Scott said Tuesday he will cancel massive cuts in the Agency for Persons with Disabilities if legislators come up with a $174-million budget patch.
Since Scott's across-the-board cuts March 31, hundreds of Floridians with disabilities have been searching for new caregivers while companies that serve them are reducing staff and services.
"Hopefully, we'll see if the Legislature will give us some emergency funding. But we have to live within our means," Scott told about 100 APD employees after a tour of their agency.

Easing Anxiety at the Doctor's Office

Medical appointments can be very challenging for children with autism and other developmental disabilities.
The combination of long waiting times, unfamiliar surroundings, and invasive - sometimes painful - experiences can make the appointment anxiety-provoking for parents and traumatic for children.
Parents and educators can make these experiences less upsetting by informing others of their child's needs and using strategies based on the principles of behavior analysis.
Often, if medical practitioners are aware that they will be serving a child with a disability, they can make special accommodations to help the visit go more smoothly.

Cholesterol and Autism

NEW YORK -- As people around the globe recognize autism this month, researchers are launching a new study focusing on cholesterol levels of children.
It's a whole new focus of research on this mysterious syndrome. In some cases, researchers think that cholesterol levels could be too low and that could be having an effect on children's development.

Police Sensitivity to People on the Spectrum

As was plainly evidenced by the encounter that law enforcers had with an eight-year-old boy in Colorado last week, a person with behavioral problems can present some serious tactical challenges — even if that person is four feet tall and 82 pounds.
Following the posting of that news item on PoliceOne, I had the opportunity to connect with Captain Greg Lineberry of the Everett (Wash.) Police Department, who rightly pointed out that officers responding to calls involving ‘out of control’ children should keep in mind that they may not be dealing with a child who merely needs better parenting. In some cases, that child may suffer from a medical condition — such as Autism Spectrum Disorders (ASD) or a mental/psychological health issue — that is actually driving the behavior which led to the 911 call.

H.S. Students Make Dream Come True

I realize I'm a little New York heavy this morning, but this is just one of those feel-good stories.

GREAT NECK, N.Y. -- A special-needs high school student on Long Island is about to see her dream come true – an all-expense-paid trip to Universal Studios and a tour of the park – a visit that was funded by bake sales and help from students at an area high school.
"There's just no way to describe the amount of love and emotion you feel when you give another child an opportunity they might not have had otherwise," says Alexandra Engleson, who started Adopt a Dream, which helps raise money to make dreams come true.
At Great Neck North High School on Long Island, Adopt a Dream found a student who deserved to see her dream come true. Tykim Loney was discovered at a talent show for special needs students.

With Officials' Confirmation Comes Hope

ALBANY -- Lawmakers and advocates on Monday hailed what they hope will be improvements in the way the state cares for disabled people in its charge with the confirmation of a new commissioner of the Office for People with Developmental Disabilities.
In addition to confirming Courtney Burke as commissioner of OPWDD, the state Senate also confirmed Robert Bearden as chairman of the Commission on Quality of Care, an independent organization that serves as a watchdog over state and private institutions for the disabled

Dr. Peter Gerhardt on Adults with Autism

My childhood friend Lisa Jo Rudy who blogs at about.com on autism spectrum disorders has a wonderful guest blog by Dr. Peter Gerhardt, President of the Organization for Autism Research, and the needs for adults on the spectrum. Hopefully the media will catch on that it's not just about cute children with autism.

The cohort of individuals with autism spectrum disorder (ASD) diagnosed as part of the first wave of what is often referred to as the autism epidemic is rapidly approaching adulthood. This cohort represents only the proverbial tip of the iceberg with some reports noting that 70% of the currently identified individuals with ASD are less than 14-years old. These numbers represent a looming crisis of unprecedented magnitude for adults with autism, their families, and the ill-prepared and underfunded adult service system charged with meeting their needs.

'Eye on the Door:' Life with Autism

Whether it's to a swimming pool or a doughnut store, Michael Browne knows where he wants to go -- and since he doesn't have the words to say so, he'll just dart off.
Michael, who's about to turn 10, has a severe form of autism. People with the developmental disorder typically have difficulty communicating and socializing. But another sometimes dangerous aspect of autism has received less scientific attention and causes endless stress for parents: A tendency to run away from home or adult supervision.
"We constantly have our eye on the door and on Michael, and it's a hard way to live," said Melanie Browne of Katy, Texas. "I think that's the hardest part of raising him, is just the wandering issue."

The Incredible Albert Pujols

OK, if you can, forget about allegations of steroids, and his rejection of the Cardinals contract offer, 60 Minutes had a great piece Sunday night on Albert Pujols.

His big bat has made the St. Louis Cardinals' slugger one of the top 10 players in baseball history. But to people with Down syndrome and the poor of his native Dominican Republic that he helps, he means a lot more than home runs and RBI. Bob Simon reports.

Scorned Bureaucrat Gets New Job in Florida

I worked in Florida in the early-mid '80s because for a reporter, there was no better place for the unusual story. But things have gotten way out of hand. Seems like Gov. Scott just doesn't get it.

TALLAHASSEE, Fla. -- Almost a month ago, Gov. Rick Scott gave an unadvertised $78,000-a-year job to Carl Littlefield, a career bureaucrat who quit his latest job 17 days after he was appointed rather than face questions about his handling of a controversial group home.
The revelation of Littlefield’s new job has become a nuisance for Scott, who has demanded the elimination of 1,849 full-time jobs at the same state agency.
The governor maintains he is only trying to bridge gaping holes such as the estimated $174-million deficit at the Agency for Persons with Disabilities.

Dad Caught Between Job and Caring for Daughter

George Ulrich gets up long before the sun, around 3 a.m., every workday. He drives through the gloom of night to be at work by 5 a.m., delivering mail in Scarsdale, N.Y.
Ulrich has been working the early-early shift for 17 years, and he does it for a special reason. As the father of a daughter with profound disabilities, he needs to be home in Croton-on-Hudson when Victoria, 16, returns from school around 2:30 p.m.
But that arrangement could be coming to an end. The U.S. Postal Service, going through a painful downsizing, has been restructuring its personnel around the region, and Ulrich's supervisors say the 5 a.m. start time is no longer possible.

Idol Contestant Gives Families Hopes

SAN FRANCISCO -- On Thursday night, American Idol fans watched Santa Cruz contestant James Durbin advance to the next round on the competitive reality show.
Durbin has Asperger's Syndrome, a mild form of autism. His success on the show has provided inspiration to families with children who have autism.

'Greatest Musical Moment'

Darius Rucker may have picked up a few more band members when he performed with the ACM Lifting Lives music campers during Sunday night's ACM Awards.
"When I was up there, I just felt every ounce of love that these guys have," Darius tells The Boot. "I love these guys. I can't wait for the camp so I can go hang out. They're awesome to hang out with; we laugh all the time. We're always high-fiving and hugging. These are my friends. This is my band."

Film Gives Voice to Silent Minority

A documentary about two middle-aged autistic men and their global journey to change attitudes about autism is on the big screen this month.
Part advocacy film, part road trip/buddy movie, Wretches & Jabberers follows Tracy Thresher, 43, and Larry Bissonnette, 53, as they travel from their hometowns in Vermont to Sri Lanka, Japan and Finland to meet other advocates and educators, and shed light on the inner lives of autistic people with little or no speech.

Federal Cuts Threaten Programs

MANASSAS, Va. -- Tapping his toes to the music, Prince William County resident Sean Haley sang along to the theme song of "Scooby-Doo" on Thursday afternoon while watching the popular cartoon in his upstairs bedroom.
Haley, 48, said he tunes in daily and shares his love of Daphne and the gang with his six roommates who live in one of the Arc of Greater Prince William's group homes for people with intellectual and developmental disabilities.
The housing program might become a casualty of federal funding cuts. All eyes are on the Senate to see which of the House’s proposed $61 billion in spending cuts will become law, including those that jeopardize community development block grants.

Study Seeks Causes of Autism Prior to Birth

BALTIMORE, Md. -- When Ginny Russo goes into labor sometime at the end of May, her first call will be to her doctor. Her second: to the researchers who want to collect her baby's placenta, umbilical cord blood and first dirty diaper.
They're part of the same crew that, during the course of her pregnancy, came to Russo's Carroll County, Md., home to vacuum (and take what got sucked up with them), collect dust samples and poke their noses inside her cabinets and closets, making note of cleaning supplies, hair products and other chemicals on hand. They also took blood and urine samples and had Russo check in regularly to report any medicines she was taking, what she was eating, whether she was wearing sunscreen.
Researchers in a national study are interested in all of this because Russo already has a child, one with autism. That gives her unborn child much greater odds of also having an autism spectrum disorder. (The likelihood is less than 1 percent for the general population, but 20 percent for babies with an autistic sibling, according to Rebecca Landa, director of the Kennedy Krieger Institute's Center for Autism and Related Disorders and a co-investigator for the study in Maryland.)

Judge: Minnesota Autism Care 'Inconsistent'

ST. PAUL, Minn. -- A Ramsey County judge has ruled that Minnesota's Medicaid program has been "inconsistent" in paying for intensive autism treatment for some children while denying it to others.
But the ruling stops short of ordering the state to cover the treatment for a low-income child, identified as T.O., who is at the heart of the case.
The judge sent the issue back to an administrative law judge for further proceedings.
Amy Dawson, the lawyer representing T.O., had sued the state and HealthPartners for refusing to cover the child's bills for Applied Behavior Analysis (ABA) therapy. Dawson argued the state routinely paid those bills for more affluent families under a Medicaid program for disabled children, but refused it to low-income children like T.O., who was enrolled in a Medicaid managed-care program.

Illinois Won't Let Homes Close

The operators of two group homes in the Chicago area, including one in Evanston, maintain the state has drastically slashed their funding but won't let them close the homes where they say funds are now insufficient to provide adequate care.
Attorneys for the Lester and Rosalie Anixter Center, a long established Chicago-area nonprofit which has provided services since 1919, filed the lawsuit April 1, naming Michelle Sadler, secretary of the Illinois Department of Human Services, and Lilia Tennit, director of division of developmental disabilities, as the defendants.

Ernie Els and Son Inseparable

For what it's worth, the Vegas oddsmakers have Ernie Els at 60-1 to win the Masters this week. That's nothing. The odds that Els would ever become an international spokesperson and world-class philanthropist for autism research were a VCU-like long shot, maybe higher.
But here he is, the unlikely front man for a cause he didn't choose. Instead, it chose him -- or more precisely, it chose his 8-year-old son Ben, who was diagnosed with an Autism Spectrum Disorder (ASD) in 2006.
"At first, you think you've been knocked down by the man upstairs," Els said. "It is a challenge at first. But when you find your feet, it really is a blessing. It's a special way of life. These kids are special people. We call them, 'God's kids, God's children.'"

Autism's $100,000 Question

It all started with a scientist and 19 autistic children.
Ole Ivar Lovaas, a psychologist at the University of California, wanted to see if he could change the way the children behaved, given enough time and effort. So he lavished them with intensive therapy for 40 hours a week for two years or more.
At the end of the experiment, Lovaas reported that nine children -- 47 percent -- had no visible sign of autism by first grade.
Today, almost 25 years later, therapists in Minnesota are charging up to $100,000 per year for the treatment Lovaas pioneered, and some parents believe it is the answer to their prayers. Now a battle is raging in Minnesota about whether taxpayers and health insurers should be forced to pay for the treatment, known as Applied Behavior Analysis (ABA).