________________________________________________________________
Monday,
June 29,
2009
Vol. 13 No. 67
NEWS
Rise In Autistic Adults Worries Caregivers
PUBLIC HEALTH
Vexing Vaccinations
EDUCATION
Court Rejects Appeal From Parents Of Autistic Son
FINANCES
PA Autism Insurance Act Takes Effect July 1
NJ Bill On Autism Insurance Closer To Becoming Law
RESOURCES
DVD Teaches Autistic Kids What A Smile Means
Rethink Autism: Revolutionary Web Resource
PEOPLE
They Taught Him to Fish, Then Let Go
Tulsa Child Dies After Found Floating In Pool
Autistic Teen Dies After Being Hit by Train
EVENTS
Viva Las Vegas Gala for Autism
COMMENTARY
California's Budget Cuts: Deep to the Bone, Shallow To The Roots
NEWS
Rise In Autistic Adults Worries Caregivers
"The number of autistic children expected to need extensive adult services by 2023 is about 380,000 people, and the bill for caring for them will be in the billions of dollars."
From the Sacramento Bee. is.gd/1ifjB
As a chubby, smiling baby boy, Marlon Barton delighted everyone around him. Now that he is a strapping young man who flaps his hands and makes odd noises, no one knows quite what to do with him.
Barton is 26 years old, 6 feet 2, 283 pounds and acutely autistic. He was diagnosed when the condition was considered unusual and when doctors offered little hope to parents of the children who suffered from it.
His mother, Pearlie Barton, cares for her son around-the-clock now in their south Sacramento home. "He scares people, even though he usually is not aggressive," she said.
"Being large, African American and autistic does not work in his favor," either socially or in programs designed to help people with disabilities, she said.
Autism, a neurodevelopmental disorder that affects language and social skills, was relatively rare when Barton was born. Since then, for reasons that are unclear, diagnoses have skyrocketed and the condition is surfacing in an estimated 1 in 150 children.
As a tidal wave of these youngsters moves toward adulthood with complex behavioral and medical problems, society is largely unprepared.
"We don't have the programs. We don't have the research," said Dr. Robert Hendren, director of the UC Davis M.I.N.D. Institute. "We have this very large adult population of autistics coming along, and we don't know how to deal with them. We just haven't come to terms with it."
But the futures of hundreds of thousands of autistic people in America cannot be ignored for long, said Hendren and others.
In California, regional centers will be serving more than 50,000 autistic people of all ages by the end of this year, according to the state Department of Developmental Services. If the trend continues, that number will grow to 70,000 by June 2012.
By 2013, according to the department, more than 4,000 teenagers with autism will reach adulthood, and by 2018 the agency will be serving more than 19,000 adults with the condition. Nationally, the number of autistic children expected to need extensive adult services by 2023 is about 380,000 people, and the bill for caring for them will be in the billions of dollars.
Care providers are just beginning to grapple with how to deal with the surge, even as governments slash social services to cope with budget deficits.
"The financial impact will be huge," said Hendren. "Many, many people will be living impaired lives, and where are they going to go? Who will take care of them? The challenge will fall largely to family members. As those parents age, they are asking, 'Who is going to take care of my autistic child after I am gone?'"
It is a question that haunts Pearlie Barton, 58, and her friend Helen Richard, 78, who also has an adult autistic son.
"Right now, every time I leave Marlon out of my sight I'm taking a chance," said Barton, recalling how once, when she looked away for a moment, her son wandered into a women's restroom. "I have to watch him every minute. But I'm not going to be around forever."
Research focuses on children Some people with autism, including Ray Richard, can speak and care for themselves with limited supervision. Some are able to work, if employers are willing to adapt to their limited social skills. Others, like Marlon Barton, are entirely dependent on caretakers and family members. Day programs, job opportunities and housing options geared specifically toward adults with autism are limited.
"There's really nothing out there to meet the needs of these guys, even guys who are as highly functional as Ray," Richard said. Her son is 43 years old and has Asperger's syndrome, a milder form of autism.
"Ray can type 40 words per minute," Richard said. "He has a great vocabulary. He has a photographic memory, but I can't get him a job because you can't really teach socialization. It's terrible."
Life for her son might have been better, she said, had he had access to training programs when he was younger.
Hundreds of millions of dollars a year are now devoted to research around autism. But the vast majority of studies and treatment are focused on children, whose brains are still developing and who, with early intervention, have a good chance to develop speech, social, and vocational skills.
Today in California, children who are diagnosed with autism generally get referrals to agencies that offer behavioral, speech and language programs that can help them focus, learn how to interact socially and succeed later in life.
"They don't work for everyone, but they can be very powerful for some children," Hendren said.
At school, youngsters with autism often are included in mainstream classrooms. "They learn more. School systems are taking more seriously the educational needs of people with autism," said Julia Mullen, a deputy director of the state's Department of Developmental Services.
"They have social experiences that in the past autistic children might not have had," Hendren said. "They get to go to the school dance. They learn how to communicate, to hold hands with a boyfriend or girlfriend, to be in a regular classroom and maybe learn a vocation. Years ago, we didn't believe that any treatment could be effective, and so many people ended up being in institutions."
Pearlie Barton never considered such an arrangement for her son, although others suggested it after he was diagnosed with autism at around age 2.
Her son had been an unusually stoic baby who rarely cried, even when he stumbled and fell or got his vaccinations. He never made eye contact or played with other children. He had no interest in most toys, or television. He didn't like to be cuddled.
"I always knew something was wrong," his mother said. "But back then, we didn't know anything about autism."
His parents enrolled him in public special education programs, which at the time amounted to little more than "baby-sitting," Barton said. At age 22, he earned a certificate of completion from Laguna Creek High School. After that age, public schools no longer have responsibility for providing services to people with autism. So for the past four years, Marlon Barton has spent most of his time at home with his mother, who with her husband, Larry, runs a small business and collects a monthly government payment for caring for their son.
+ Read more: is.gd/1ifjB
+ Watch slide show: is.gd/1igJ7
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the Schafer Autism Report.
$35 for 1 year - or free!
www.sarnet.org
• • •
PUBLIC HEALTH
Vexing Vaccinations
More Florida parents challenge, push limits of immunization law
By Leslie Postal, Orlando Sentinel. is.gd/1ihjy
Nikki Barnes' oldest son started kindergarten last fall before he had all the vaccines Florida requires. Her middle son, not yet 3, has had a handful of immunizations, and her baby has had none -- and won't until he is 1.
The Ocoee mother is one of a small but increasing number of Florida parents who are challenging -- or at least pushing the limits of -- the state's school-immunization law. They are delaying immunizations as long as possible and seeking exemptions to the law to help them do that.
Barnes is not opposed to all vaccines. But with a family history of allergic reactions, she wanted her sons' shots spaced out so they didn't get more than one at a time.
"If I give you one vaccine, I can tell what you're reacting to," she said.
And she wanted many of them given after age two, when she could feel confident they were not showing signs of autism.
With her family doctor's approval, her son started school in the fall with a temporary exemption and then finished his shots during his kindergarten year. Barnes' decision is part of a national trend that worries many pediatricians and public-health advocates. They say vaccine delay, or avoidance, is tied to unfounded fears that the shots cause autism -- scientific studies say no link exists -- and threatens to undo the good that vaccines have brought to American children.
+ Read more: is.gd/1ihjy
• • •
EDUCATION
Court Rejects Appeal From Parents
Of Autistic Son
By Associated Press. is.gd/1ie6A
The Supreme Court is leaving in place an appeals court ruling that an autistic child from Ohio is not entitled to private education at taxpayer expense.
The court on Monday rejected an appeal from Jeff and Sandee Winkelman, who are seeking reimbursement from the Parma, Ohio school district in suburban Cleveland. Their son, Jacob, is autistic.
The Winkelmans won a Supreme Court decision in 2007 that allowed them to pursue their case without hiring a lawyer.
The case is Winkelman v. Parma City School District, 08-1089.
• • •
FINANCES
PA Autism Insurance Act Takes Effect July 1
By Lucinda Wiebe. is.gd/1ijy3
As the July 1 start date approaches, even the managed care folks who deal with insurance issues daily are asking questions about how Act 62 will impact the provision of services for their clients. With such massive cross-system changes taking place all at once, there is no question that the first couple of months are going to be confusing at best and chaotic at worst for families and providers.
Until the passage of Act 62, private insurance companies were not required to pay for autism spectrum services. The insurance reform legislation faced a hard-fought battle in the PA senate, getting stuck in banking committees and mired down in partisan political negotiations. The House passed their version of the bill unanimously more than a year before the Senate was able to bring it to a vote. Insurance companies lobbied hard and argued that rates would be driven higher.
But as more and more people in high places became parents, grandparents, aunts and uncles of children with autism, their voices prevailed and now Pennsylvania has a ground-breaking law that allows thousands more people with autism to receive coverage.
+ Read more: is.gd/1ijy3
• • •
NJ Bill On Autism Insurance Closer To Becoming Law
is.gd/1ijHf
AP - A measure that would expand health insurance coverage for autism and other developmental disabilities in New Jersey may soon become law.
The bill requires insurers to cover the cost of autism treatments deemed medically necessary, such as physical, speech and occupational therapy, along with behavioral intervention. The Assembly overwhelmingly passed it Thursday.
That came a week after the Senate approved the measure, which would cap coverage at $36,000 annually for patients ages 21 and younger.
The bill now heads to Gov. Jon Corzine, who is expected to sign it into law soon. If that happens, New Jersey would be the 14th state with such coverage requirements.
+ Read more: is.gd/1ijHf
• • •
RESOURCES
DVD Teaches Autistic Kids What A Smile Means
By Maria Cheng, AP. is.gd/1ii3v
It wasn't until Jude met Jenny that the 3-year-old autistic boy understood what happy people look like.
Jenny, a green tram with a human face, had a furrowed brow when her wheel buckled and she got stuck on a track. But after being rescued by friends, she smiled broadly — and that's when something clicked for little Jude Baines.
"It was revelatory," his mother, Caron Freeborn told AP Television News in Cambridge, England. Before watching the video, Jude didn't understand what emotions were and never noticed the expressions on people's faces, even those of his parents or younger brother.
Jenny's adventures are part of a DVD for autistic children released this week in the United States called The Transporters.
The DVD teaches autistic children how to recognize emotions like happiness, anger and sadness through the exploits of vehicles including a train, a ferry, and a cable car.
It is the brainchild of Simon Baron-Cohen, director of the Autism Research Centre at Cambridge University. He also happens to be a cousin of Sacha Baron-Cohen, the comedian behind the characters Ali G, the aspiring rapper, and Borat, the crass Kazakh reporter.
Baron-Cohen first became interested in autism in the 1980s while teaching autistic children. "Why should social interaction be so difficult for a child who has very good skills in other areas like memory or an attention to detail?" he wondered.
About a decade ago, Baron-Cohen suggested that autism — which is much less likely to afflict girls — might be an extreme version of the typical male brain. Men tend to understand the world via patterns and structure, whereas women are more inclined to understand emotions and sympathize with others.
Autism, Baron-Cohen believes, is a condition where people perceive systems and patterns while remaining almost oblivious to other people and their feelings.
To help autistic children understand emotions, Baron-Cohen and his team use eight track-based vehicles in their DVD. The vehicles have human faces grafted onto them, making focusing on human features unavoidable. The video was financed by the British government.
"To teach autistic children something they find difficult, we needed an autism-friendly format," Baron-Cohen said. Autistic children are particularly drawn to predictable vehicles that move on tracks like trains and trams.
"Autistic children are often puzzled by faces, so this video helps focus on them in a way that makes it very appealing and soothing," said Uta Frith, an emeritus professor of cognitive development at University College London, who was not involved in developing the video.
Frith said the DVD was a way for autistic children to learn social skills the way other children might learn math or a foreign language.
In a small study of 20 autistic children between ages 4 and 7, Baron-Cohen and colleagues found that autistic children who watched the video for at least 15 minutes a day for one month had caught up with normal children in their ability to identify emotions.
But Baron-Cohen cautioned that while autistic children might be able to recognize emotions better after watching the DVD, that would not necessarily change their behavior at home or on the playground.
"This is not some kind of miracle cure," he said. "It just shows that if you have the opportunity to practice these social skills, you can improve."
Other experts said the video was not a replacement for working and playing with real people.
"You can't just park your child in front of this for hours and go to the other room," said Catherine Lord, director of the Autism and Communication Disorders Center at the University of Michigan. "This will hopefully start interactions or play sequences that kids can then play with real people."
+ On the Net: www.thetransporters.com
• • •
Rethink Autism: Revolutionary Web Resource
is.gd/1ijWM
We love it when we come across a service or product that is so obvious that it should exist but hasn't, until now.
Rethink Autism www.rethinkautism.com/default.aspx is one of those businesses.
With one in 150 babies expected to be born with autism this year, I'm sure each one of us knows a family with a child on the autism spectrum. We sure do, and the recurring theme that is echoed by these families is that the only effective treatment for autism is intensive treatment and the bottlenecks parents continuously face are 1) access to effective treatment, and 2) its financial cost.
That's where Rethink Autism comes in. It meets the immediate needs of autism families.
Rethink Autism provides parents and professionals with immediate access to effective and affordable treatment tools and they do this with a web-based program centered around hundreds of dynamic instructional videos of best practice teaching interactions, and step-by-step training modules. The site’s innovative assessment tools help parents and professionals design individualized programming to meet each child’s learning goals, while state-of-the-art data-tracking systems allow users to track the learner’s progress.
Rethink Autism’s methods and resources are based on Applied Behavior Analysis (ABA) and their Senior Clinical Advisor, Dr. Bridget Taylor, personally reviews each of the lessons and training videos accompanying the curriculum, ensuring clinical integrity and the portrayal of research-based teaching strategies.
And lastly, in terms of cost, while ABA is the best known method for treating children with autism, practitioners and schools cannot always bring ABA to each and every child who might benefit from it. For approximately the cost of a single hour of individual therapy by a certified professional, Rethink Autism offers its monthly subscribers access to the resources necessary to begin working with a child immediately.
• • •
PEOPLE
They Taught Him to Fish, Then Let Go
By Peter Applebome, NYTimes, is.gd/1ihDU
The invitation for Dan Mulvaney’s graduation Sunday showed a burly young man with a hipster’s goatee wearing a graduation cap (courtesy of Photoshop) and holding a real striped bass he caught in the bay behind Long Beach High School.
It read: “ ’Twas said that by teaching a man to fish you feed him for a lifetime.
“Dan Mulvaney has learned to fish, learned to cook and accomplished many things. Dan is ready to take on the world. Join us in celebration of his graduation, with honor, from Long Beach High School."
It concluded: “Casual cuisine, beach-friendly dress code, indescribable pride."
You could sense that indescribable pride Friday as his father, Jim Mulvaney, watched his son at work at the recreation center in this Long Island suburb just across the bay from their home.
After all, Dan holds down two jobs, at the recreation center here and the Lakewood Stables in West Hempstead. He’s getting ready to move into a house with three friends. He cooks — mostly pasta — and picks up after himself and does his chores at home better than most of his peers. His mother, Barbara Fischkin, says when they walk on the boardwalk in this unpretentious seaside town, more people greet him than her. Dan often accompanies his father to a local bar like Geri’s or John Henry’s, nursing a Sprite and picking the olive out of his father’s martini.
At 21, he has even managed to learn to say a few words — hi, mom, dad, more, food, bathroom and a few others. He may indeed be ready to take on the world, but at the very low end of the autism developmental scale, he’ll take it on with very limited tools. He’ll almost certainly need a full-time caregiver for the rest of his life.
+ Read more: is.gd/1ihDU
• • •
Tulsa Child Dies After Found Floating In Pool
By News On 6 is.gd/1ihT1
A 4-year-old boy has died after he was found in a neighbor's swimming pool over the weekend.
Authorities say Keagan Coble went missing Saturday night in the 6900 block of West 34th Street.
The family began searching for the boy and found him floating in the pool.
He was rushed to the hospital where he was revived. However, he died Sunday morning at a Tulsa hospital.
The family says the young boy suffered from autism.
• • •
Autistic Teen Dies After Being Hit by Train
WNED News is.gd/1iiKD
Buffalo. NY - A 15 year old autistic boy has died from injuries suffered when he was hit by a train after wandering away from a baseball game.
City of Tonawanda Police say Anthony Fracassi died after his family decided to remove him from life support. The teen suffered severe injuries last Tuesday evening when he was struck by a CSX freight train near Main Street and Fuller Avenue.
Police say no one noticed when the teen wandered away from a large group playing baseball.
Police say no one will be charged in the case.
• • •
EVENTS
Viva Las Vegas Gala for Autism
is.gd/1iiYw
Keller Williams will present the Viva Las Vegas Gala on Sat., Oct. 24 from 7 p.m. to midnight at the Marriott Hotel at George Bush Intercontinental Airport.
The casino night event will benefit Including Kids, Inc., based in Humble. Founded in 2003, Including Kids provides educational and therapeutic instruction for children with autism and related developmental delays.
"We are truly honored that Keller Williams chose us when they had so many worthy charities to pick from,” said Including Kids Executive Director Jennifer Dantzler. “We will do whatever we can to help make this a successful evening and the children will benefit greatly from this event!"
Individual tickets to the gala are $100 which includes a buffet dinner and dancing. Singer Tony Mac wll be the featured entertainer along with Las Vegas-style showgirls and a D.J. In addition to the casino games, participants will have a chance to win raffle and auction prizes donated by local businesses.
+ Read more: is.gd/1iiYw
• • •
COMMENTARY
California's Budget Cuts: Deep to the Bone, Shallow To The Roots
By Dr. Kate Scannell, Contra Costa Times. is.gd/1ifF0
On the surface, a machete does a fine job of cutting a path through thick woods — at least for a short while. But the problematic roots that remain firm in the soil tend to encourage regrowth of the same obstacles.
Many of California's proposed state budget cuts appear to have been made by machete-wielding accountants. But their blunt cutting provides only a surface budget fix, ignoring more deeply rooted concerns that will generate only greater taxpayer costs.
These are difficult recessionary times, and I do not envy our state's legislators who must somehow resolve California's $24 billion deficit. But Gov. Schwarzenegger's proposal to eliminate in-home support services for over 400,000 disabled recipients in hopes of saving $600 million is false economic hope. His plan to eliminate adult day health care programs in hopes of saving $117 million is a shortcut through a deeper problem that is bound to leave taxpayers in worse financial straits.
The point is that in-home support services and adult day health care programs are cost-effective services that save money for the state and its taxpayers. In fact, the services were developed in hope of keeping disabled, frail and demented people out of more costly institutionalized care and nursing homes that would further burden MediCal.
To eliminate these programs now is to exchange their relatively inexpensive cost for much more expensive care.
+ Read more: is.gd/1ifF0
Note: The opinions expressed in COMMENTARY are those of the author and
do not necessarily represent the views of the Schafer Autism Report.
