Jeff Sell's Blog

ASA Statement on Vaccine Injury Court Case

Jeff Sell — Sun, 09 Mar 2008 13:41:23 EDT

ASA Statement on Vaccine Injury Court Case

On March 6, 2008, the major news networks reported on a National Vaccine Injury Compensation Program case in which liability was conceded based on circumstances surrounding Dr. and Mrs. Poling's 9-year-old daughter's autism. Medical personnel at the Division of Vaccine Injury Compensation, Department of Health and Human Services concluded that the facts of this case met the statutory criteria for demonstrating that the vaccinations Hannah Poling received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder.

Individuals living with autism need help today, and this case illustrates the need for the medical community to probe further into environmental causes of autism. The Polings, like all families affected by autism, deserve to be heard and supported in their journey raising their daughter. While we don't know the cause for autism, or its interaction with other conditions or environmental aggregators, we need to focus today on what works to maximize the potential of people with autism to help them live meaningful, productive lives. This has always been ASA's mission and we will continue to advocate for research, family and individual support, and lifespan services for people across the autism spectrum.

ASA believes that the science of autism causes and treatments need to be more vigorously researched. We hope that primary decisions will be reached through thoughtful dialogue by parents and professionals on medical research and comprehensive treatment and services, not court rulings.

Sincerely,

Lee Grossman
President and CEO
ASA Member since 1991
Parent of a son with autism

Changing Face of Autism: Numbers Rise as More Behaviors Included

Jeff Sell — Thu, 01 Nov 2007 00:18:25 EDT

Changing Face of Autism: Numbers Rise as More Behaviors IncludedDebate Flares Over Rising Diagnoses of Autism, Need for InterventionBy SUSAN DONALDSON JAMES

Oct. 31, 2007 —

At the age of 2, Arik Dahlen would first greet a new playmate with an intense stare. Then he would push the child over.

His mother, Kari Dahlen of Lafayette, Calif., noticed other odd behaviors, including language delay, so she spoke to her pediatrician.

"The doctor initially dismissed it," said Dahlen, but a year later Arik unexplainably got on all fours on the examining room floor and began meowing loudly like a cat.

"Suddenly the doctor was overexcited and said, 'Why didn't you talk to me about this earlier?'" said Dahlen. "Clearly this was not normal for a child."

Arik was later diagnosed with PDD-NOS (pervasive development delay, not otherwise specified), a milder form of autism that is grouped among a wide swath of autistic behaviors.

For decades, the incidence of autism in the United States was considered to be about 1 in 2,000 children, according to the Centers for Disease Control and Prevention. Now, using improved methodology, the incidence is believed to be about 1 in 150, a statistic that is even higher for boys 1 in 94.

Early Diagnosis Key

"This is a major public health problem, but we are not using the term epidemic," said Marshalyn Yeargin-Allsopp, a CDC pediatrician.

Now a debate is raging over whether the apparent spike in autism is a result of more cases or the inclusion of less severe behaviors like Arik's.

Some doctors say autism advocates have over-reacted, creating new medical pathologies for milder cases of social awkwardness that were once considered a variation of normal.

Nevertheless, medical experts agree that more and early diagnoses are leading to better care for those affected.

This week, the American Academy of Pediatrics released two new reports to help pediatricians recognize autism. Intervention before the age of 3 can dramatically change outcomes, they say.

"Autism definitely makes the list of many parents' top anxieties," said Rebecca Odes, author of "From the Hips" and parent advice columnist for baffle.com.

"Parents are left watching and waiting to find out if their child develops any of the symptoms," said Odes. "Many of the warning signs of autism are also common in babies who don't have autism."

Autism is defined by significant impairments in social interaction and communication. Many children have unusual ways of learning, paying attention or reacting to different sensations. Children can range from gifted to severely challenged, according to the Florida State University Center for Autism and Related Disabilities.

The statistics on autism can be misleading when comparing earlier studies in the late 1980s and 1990s, a time when different diagnostic criteria was used, Yeargin-Allsoppa noted.

Now, the CDC uses "active surveillance," rather than just receiving reports, and consistent rubrics to count children.

To put autism in perspective, about half the number of children diagnosed with autism three in 1,000 have cerebral palsy. One in 800 has Down syndrome; only 1 in 1,000 has hearing or vision loss. But 9.7 in 1,000 are diagnosed with mental retardation.

Overall, a staggering 17 percent of all children are affected by a large group of learning disabilities, including autistic behaviors. "The impact of this is huge," said Yeargin-Allsoppa.

The "triggers" that the CDC includes in its statistics are so broad that children like Arik with symptoms some call "autism lite" are now included. At 6, he is in an inclusive first-grade classroom with extra help for speech therapy and social skills training.

'Follow Your Instincts'

Today, Arik has made friends and is doing well academically, but his mother said the road to help was rocky.

"For two years, we jumped through crazy hoops and they didn't know where to send us," said Dahlen, whose son did not exhibit the classic symptoms of autism.

Before his diagnosis, doctors told Dahlen, "he would never go to college, was a menace to society and would end up on drugs," according to his mother. "Every step of the way, I listened to my instincts, rather than the doctors."

Yeargin-Allsopp of the CDC hopes that new screening will provide doctors with the tools to do a better job. But, she said, "there has to be a balance."

"We don't want to miss children who have the potential for serious problems," she said. "One the other hand, we don't want to unduly alarm parents when there is no cause for concern."

Autism advocates while well-intentioned cull more research dollars. "I won't say it takes away from other disorders, but [they] somehow influence Congress and have a better opportunity to see that their interests are funded," she said.

Michael Noetzel, neurologist-in-chief at St. Louis Children's Hospital in Missouri, said even though incidences of childhood seizures and epilepsy are higher, attention to autism is long overdue.

This new focus on autism could have a positive impact on public policy and research dollars in other neurological disorders and normal brain development.

Public awareness has taken away the stigma, said Noetzel. "In my practice, autism has gone from a diagnosis families wanted to avoid and didn't want to talk about to somewhat of a relief."

New screening and proper diagnosis if it is useful in helping the child is a good thing, he said. But overdiagnosis can "make things not better, but worse" for children, he said.

Can Statistics Lie?

"Society has a role to lessen impact of disability," said Noetzel. "The kid who didn't fit in and was a little odd now we are saying he has a disability."

"The million-dollar question is, are we making their lives better?" he said. "I don't think we have that information."

Dr. Jerold F. Lucey, editor of Pediatrics magazine, and on the faculty at University of Vermont College of Medicine, said he believes the CDC numbers are high.

"It used to be with a lot of children you didn't know what was wrong with them," said Lucey. "Some were good at school and others were slow," he said. "Society doesn't want to accept such children, and they turn it into a disease."

Still, the Autism Society of America estimates that CDC statistics are low. They say the condition affects 1.5 million Americans at a cost of $35 billion annually.

"The public awareness awareness campaign is warranted and should be heightened," said Marguerite Colston, the society's communications director. "There are more kids with it, even when you account for better diagnostics."

Colston, of Bethesda, Md., has firsthand experience. Her 7-year-old son Camden was diagnosed at the age of 4, but she noticed symptoms at just 6 months.

Camden would not look at his mother or babble or play patty-cake. He didn't walk until he was 3 years old and is still nonverbal.

Colston believes early screening would have made the difference in her own child's outcome.

"There is no cure, but we have a better shot at managing the symptoms and dramatically improving lives," said Colston.

"The hardest thing is the fatigue factor," she said. "Getting them to communicate takes so much energy. Every day there is a new challenge. There's a lot of hope, but it's hard finding that light of hope."

ASA San Diego Offers Resources and Information to Families with Autism in Wake of Fires

Jeff Sell — Fri, 26 Oct 2007 11:45:19 EDT

Local chapter of largest membership organization dedicated to autism
          spectrum disorders rallies to assist special population

    SAN DIEGO, Oct. 26 /PRNewswire-USNewswire/ -- The San Diego County
Chapter of the Autism Society of America (SDASA), together with TACA and
the Autism Society of America, are offering information and assistance
resources to anyone affected by an autism spectrum disorder and who has
been impacted by the San Diego County wildfires.
    "Offers of support for fire victims from both the local and national
autism community have been remarkable," said SDASA president-elect Cherri
Cary. "We have resources available for displaced families."
    Evacuees are urged to contact the SDASA at (858) 715-0678 or e-mail
them at info@sd-autism.org. The chapter will identify specific needs and
provide assistance as they are able, working with the generous members
throughout the county, state and nation.
    Phone calls and e-mail contacts will be returned as quickly as
possible. Volunteers will respond within 24-36 hours. Concerns of an urgent
or emergency nature should be directed to the county 211 or 911 call
centers.
    "ASA joins with its members all over the nation to offer its support of
all citizens in the California counties affected by the wildfires," said
Lee Grossman, President and CEO of the Autism Society of America. "As with
other national disasters, we continue to be so proud of our chapters and
their rapid, caring response to families living with autism."
    ASA is the largest, oldest member organization dedicated to autism in
the world. Together with 190,000 members and supporters across 206 chapters
in the U.S., ASA's mission is to improve the lives of all affected by
autism-- individuals with autism, their families and the professionals with
whom they interact. For more information on autism or ASA, visit
http://www.autism-society.org or call 1.800.3AUTISM (1.800.328.8476).

A life dedicated to being an autism advocate

Jeff Sell — Tue, 16 Oct 2007 10:05:36 EDT

A life dedicated to being an autism advocate

LAKE CHARLES, La. -- Having a child diagnosed with autism spurred former Dr. Ruth Christ Sullivan, a former Lake Charles resident, to four decades of service in helping to make sure people with the disorder and their families received the support and services they needed.

Sullivan is retiring at the end of this month from a career that has taken her across the country and around the world.

"It has been an interesting, engaging and challenging career," she said. "When I first began, people did not know what autism was. I would tell someone I had an autistic child, and they would get it confused with 'artistic.' Now just about everyone knows what the term means."

Sullivan's son, Joseph, was diagnosed with autism in Lake Charles just before he turned three.

"We were lucky to get a proper diagnosis then," she said. "There was a young child psychologist that came to Lake Charles once a month from Beaumont. I had noticed a little odd behavior in Joseph and knew that something was different with him, so we had someone see him. I had heard the term autism in grad school, but did not know what it meant."

The family moved to Albany, N.Y., where Sullivan's career as an advocate and lobbyist began.

Two others physicians in Albany made the same diagnosis.

"Back then, physicians were not that familiar with autism, but both the physician and child psychologist who saw Joseph in New York had worked with Leo Kanner, the man who had coined the term autism," Sullivan said.

Her next step was to find out what to do. How was Joseph going to be able to go to school?

She said she organized a group of parents and "because of us, New York became the first state to legislate that children of school age in mental institutions must be educated. That was the first legislative work we did, then we began working to get the kids in school, and began making progress."

The Sullivans soon moved to Huntington, W.Va., where she started a local and state society and worked for laws mandating education for the mentally disabled.

In 1974, West Virginia became the first state to specifically include autism in its mandatory education laws with the encouragement of the West Virginia Society for Autistic Children. The West Virginia law preceded the federal Individuals with Disabilities Education Act in 1975. That act guaranteed a free and appropriate education for all children with disabilities.

"I became a lobbyist, organized parents and was able to help get money for two studies," Sullivan said. "The first was an analysis of what was being done in education for children with autism. I applied for another grant on a study of services for all ages, so that something could be done once kids with autism finished school.

"As a result of the study, we made 28 recommendations to the state government. I was looking at that list of recommendations not too long ago, and we have accomplished every one of them here in the Huntington area."

The recommendations were not acted on immediately.

"When I saw that no one was going to do what was in the recommendations, I created the Autism Services Center (in 1979), which set out to do what needed to be done," she said.

Her son was 15 by the time he had a legal right to an education.

"Luckily, by the time we got to Huntington, there was already an autism classroom set up. It was one of the first in the country," she said.

Joseph attended middle school and high schools in Huntington.

"We had to fight to get him in, but he had a wonderful teacher and learned so much there," Sullivan said. "Each step along the way, the agency would work to provide services that were not provided by the state government then."

The advances advocated by the agency also offered a respite for the parents of autistic children.

"Just being able to have someone take the person with autism out of the house for a while is a big benefit to the parents," Sullivan said. "Another thing we did was train the parents about what their rights were, what services were out there."

Her advocacy work in West Virginia consisted from consulting and doing some writing from her home. Then, the state asked her to assist with an 11-year-old autistic girl from Huntington.

"I drew out a plan and found some staff to help with her and asked (the state) to give me the money, and they did," she said. "They called with a few more, and we found help. It grew from there."

The Autism Services Center now has 13 homes with one-one-one staff around the clock, serving 280 people of all ages. About a third of them have autism.

"We provide services from diagnosis to death," Sullivan said. "Our clients live three to a house in nice homes in nice neighborhoods. They all have jobs and a job coach goes with them. The ones who are school age attend school. It is remarkable to see the progress they make."

Fun with cause at Autism Move-A-thon

Jeff Sell — Tue, 09 Oct 2007 13:45:20 EDT

Fun with cause at Autism Move-A-thon
By Alexa JamesOctober 08, 2007
Times Herald-Record

Montgomery — The scene at the county park yesterday looked sort of like a tailgate, with vehicles lining the grassy hills and hot dogs and hamburgers on the grill.

And sort of like a rock concert, with live music and crowds in souvenir T-shirts.

And a lot like a recess gone wild, as hundreds of kids with painted cheeks and sticky mouths raced around Thomas Bull Memorial Park for the annual Autism Move-A-Thon.

Organized by the Mental Health Association in Orange County and a cadre of parent volunteers, the Move-A-Thon urged folks of all ages to walk, run or dance a mile to raise awareness about autism, the nation's fastest-growing developmental disorder. Roughly 1,200 people attended this year.

Studies show the number of children diagnosed with autism has been increasing 10 percent to 17 percent annually. In 1990, about 1 in 10,000 kids developed autism. Odds are now 1 in 150.

"It's an epidemic," said Nadia Allen, executive director of the Mental Health Association. Events like the Move-A-Thon, she said, give families living with autism a chance to network with others. The idea is to share information and help society better understand the disorder.

Mild to severe autism generally appears between 15 and 20 months of age. In most cases, a child who seems to be progressing normally will start to regress, losing physical abilities, speech and social skills. About 40 percent of autistic people never speak, and many respond unusually to sounds and touch.

For parents, the behavior of their autistic children can turn simple activities, like going to a playground or to church, into uncomfortable situations.

"Sometimes other people who don't have special kids are indifferent toward Sammy," said Adelaida Escamilla of Newburgh, whose 6-year-old son is autistic. One day, when she was in the grocery store and Sammy was making loud noises, someone told her to make him "shut up."

"Sammy is sensitive," she said. He can tell when someone is angry with him or poking fun.

"Sometimes families with this kind of child can't go outside with their kids," she said.

That was not the case yesterday. Kids ricocheted inside inflatable castles, banged on drum sets, rode a miniature choo-choo train and helped a fairy with purple hair do magic tricks.

The Escamilla family wore blue tie-dyed T-shirts that said, "Someone I love has autism. Ask me how you can help."

The Move-A-Thon is a major fundraiser for the Mental Health Association's autism outreach programs. Last year's event raised about $28,000.

A portion of the proceeds are donated to national autism research groups, but much of it stays local, providing hundreds of mini-grants — stipends of as much as $250 — for families to receive better autism care. Parents use the funds to attend conferences or therapies not covered by insurance plans. Some buy books, special toys, nutritional supplements and safety gates.

To learn more about autism and ways to get involved, visit www.mhaorangeny.com or call 294-7411.

Hudson benefit raises awareness about autism

Jeff Sell — Tue, 09 Oct 2007 13:30:06 EDT

Hudson benefit raises awareness about autism By Betty O'Neill-Roderick Special to the Beacon Journal
Published on Monday, Oct 08, 2007
The second annual ''Pull the Cork on Autism Benefit'' drew more than 100 people Thursday evening to the Vue Restaurant in Hudson. Kelly Shaw chaired the event, which featured wine tasting, gourmet foods, a wine basket raffle and a silent auction.
Lisa Weaver, president of the Greater Akron Chapter of Autism Society of America, said all funds raised would be used to provide a first responder training program. On Dec. 4, Dennis Debbaudt, a world-renowned speaker, will present two workshops for first responder and a workshop for parents.
Joy Spencer greeted guests, Rich Gleason and Art Jenson provided music, and Matt Patrick of WKDD was master of ceremonies. Jim Orenga, Mike House and Bob Treend tasted wine from around the world provided by Paul Tolchinsky and his daughter, Heidi, of Wineworks. Roger Thomas of Piatto Novo seared sea scallops in an orange reduction sauce for guests, while across the way Rich Carson, executive chef at the Vue, offered fresh goat cheese ravioli.
In the center of the restaurant Sue Dallman, Nancy Charlins, Rob and Christi Bowser and Matt Force enjoyed hors d'oeuvres, while Tray McClowry and Pat Shaw watched the Tribe game.
Traci Ezzo offered vintage wine and Liz Rhoades sold tickets for a raffle. Nevada Reed, Sue Corp, Sherri Bevan Walsh, Bethany Forgione, Lindsey Trump, Marilyn Richardson and Laurie Cramer looked at auction items. Gus and Janet Gallucci of the Cleveland Chapter of ASA enjoyed the event with Carey Bartlett, Stacey Bartlett Radwany and her husband, Tim, and Tempe Zucker.

Autism: The New Black?

Jeff Sell — Sat, 06 Oct 2007 23:06:32 EDT

Autism: The New Black?Categories: for a good cause

We're not poking fun (or making light of the fact that 1 in 166 kids are diagnosed with autism). We just couldn't help but notice that it's become the cause célèbre lately.

Jenny McCarthy has been spreading a message of hope via the talk-show circuit with her new book, Louder Than Words, which recounts her son's recovery from autism.

America's Next Top Model features a 21-year-old stunner, college student Heather, with Asperger's syndrome. As host Tyra Banks chirped in one episode, "She's making a whole lot of autistic kids go, 'Wow.' " Well, not necessarily the kids, but definitely some of their families and friends.

Meanwhile, Jason Alexander, Minnie Driver, James Franco, Dermot Mulroney and other bold-faced names will perform at the 5th Annual Acts of Love Fundraiser at LA.'s Geffen Playhouse on Oct 15.

And if that's not enough, Brad Pitt's been rumored to donate to Cure Autism Now—need we say more?

Okay, just one more thing: This is one "trend" we'd love to see cured. And we're done.

Our view: Challenge of autism

Jeff Sell — Sat, 06 Oct 2007 23:04:18 EDT

Our view: Challenge of autism

Florida Tech center puts Brevard on the map in treatment of puzzling disorder

Early diagnosis and treatment of autism sometimes make the difference between an individual needing a lifetime of supervision and care or more independence.

Soon, that will be possible for more Brevard County residents with the disorder, thanks to an Autism Center to be built on the Florida Tech campus in Melbourne.

Autism, a spectrum of disorders that cause impairment in social interactions and communication, affects about 1 in 150 children, according to the Centers for Disease Control and Prevention.

More than 3,000 Brevard residents could have the disorder, the CDC says.

And the numbers of diagnoses is going up each year, in what has been called a growing epidemic.

That increase appears to be born out in Brevard, where the school district this year is serving 325 children with autism. That's up from 220 in 2002-03.

The causes of autism haven't been determined. But research shows young children who receive the therapy the center will offer -- which uses rewards to improve language and social skills -- are more likely to eventually attend regular school.

Often parents can't find or afford the therapy, however.

The new center, to open in 2009, will help fill the treatment gap, serving as many as 40 individuals a week -- mostly from Brevard -- and train parents and teachers in the therapy.

What's more, some financial help may be available. And, since there's no comparable site in Florida, it will spotlight the Space Coast as a hub for autism screening, research and training, possibly bringing in related businesses.

Autism research doesn't come without controversy.

Many parents of children with the disorder seek unproven alternative treatments. Some also hesitate to vaccinate infants and toddlers, fearing a link between autism and thimerosal, a mercury-based preservative once routinely used in children's vaccines.

Scientific studies haven't established any connection. But mercury, a neurotoxin, is proven to cause damage to the human central nervous system and was removed from most children's vaccines in the 1990s, except for children's flu shots.

That's why Rep. Dave Weldon, R-Indialantic -- who is working to get $2 million in federal funding for Florida Tech's autism center -- is pushing legislation to ban mercury in kids' flu shots by 2008-09.

Another Weldon bill would boost vaccine safety by creating a research oversight body independent from the CDC, which many believe is too beholden to drug manufacturers.

Those are issues deserving of Congress' serious consideration. Parents' distrust of childhood vaccinations and refusal to get them -- whether scientifically valid or not -- puts the larger population at risk for the spread of deadly disease.

If you don't believe it's happening, go to FLORIDA TODAY's social networking site for mothers, brevardcountymoms.com, and read comments in the Long-term Illnesses discussion under the "shots for children" thread.

That said, Florida Tech's new autism center will rightly focus not on unproven treatments and controversies, but on what's known to be most effective in treating the disorder:

Early diagnosis and intense early therapy.

Many Brevard families will benefit from the new resource, as will the larger community.

State looking for input in autism plan

Jeff Sell — Fri, 05 Oct 2007 10:13:52 EDT

State looking for input in autism plan

Jamie Pemrick of Rutland moved to Vermont almost a decade ago with her son, who was diagnosed with autism, in search of quality of life.

At least 80 therapists, counselors, advocates and parents crowded into a conference room in the Asa Bloomer building and listened to Pemrick's story, gathered there Tuesday for a public forum on autism spectrum disorders, hosted by the Department of Education in Rutland.

In the past 14 years the number of children with ASD receiving special education in Vermont has increased from 13 to 582, according to Act 35. The act was signed into law in May.

Pemrick moved from North Carolina, where her son, now 13, was tested and diagnosed through the University of North Carolina's Treatment and Education of Autistic and Related Communication-handicapped Children or TEACCH program. She gave credit to the college program, which helped her with accuracy and early intervention.

"One of the major concerns I have is diagnosing properly," Pemrick, at times choking back tears, told the crowd about Vermont's approach. "These kids are losing out because they are not being properly diagnosed."

The Vermont Agency of Human Services and the Department of Education have been asked to come up with a state plan to provide services to those with ASD from birth to death. The plan is expected to be based on the information gathered at forums scheduled in different regions of the state and through a number of committees already working.

"I'm not able to do it on my own," said Pemrick. "All of us parents are not able to do it on our own."

Her story was similar to the sentiments of a number of parents in the room. Mothers, fathers and practitioners shared their experiences. They highlighted where the state is lacking in care, needed improvements and personal successes.

Two women directed the forum, gathering information at the same time: Claire Bruno, the autism consultant for the Department of Education and Clare McFadden, autism specialist for Division of Disability and Aging Services. After hearing testimonials and suggestions, McFadden listed a number of ideas she had recorded after hearing them more than once.

Concerns and comments from the sizeable crowd emphasized the need for early intervention, coordination of services, continuation of services for adults, looking to local colleges for help in training and testing, more training needed in schools and the medical industry, funding and a regional resource center.

"I think there's a lot of gaps in our system," said Keith Grier, the family services and development coordinator for Counseling Services of Addison County.

Grier talked about the lack of coordination across environments — from home to school, and the lack of in-home services for families.

"I think a regional center would be incredibly helpful," he added.

Parents spoke of frustration with the lack of information about the immunization shots children receive and dietary allergies. Mothers with high-functioning autistic children spoke of fighting for an individual education program at their child's school.

In Vermont children must show adverse effects in order to qualify for an IEP, which can include evaluation of academic success. A number of ASD children thrive academically but display social, sensory and emotional issues.

"Simply, I just wanted Bradley to get an education, but that didn't happen from the moment we got here," said Phelippa Marriner, of Rutland, who moved to Vermont seven years ago.

Her son, now 17, wasn't diagnosed he was until 12 years old.

"High functioning — it's so often misunderstood … My voice has gone unheard and his needs have gone unmet," said Marriner.

Autism is one of the fastest-growing disabilities in the United States and now affects one out of every 150 children born, according to the Autism Society of America.

"We have to continue to raise our voices," Marriner said to the gathering. "It's obvious with the show of people here that this is a serious problem."

San Diego Declares Autism Awareness Day

Jeff Sell — Fri, 05 Oct 2007 10:11:52 EDT

San Diego Declares Autism Awareness DaySAN DIEGO, CALIFORNIA October 04, 2007 Non Profit News

(PRLEAP.COM) Mayor Jerry Sanders of San Diego has issued a proclamation declaring that November 3, 2007 will be Autism Awareness Day in San Diego. Mayor Sanders also recognized the efforts of Autism Speaks in raising awareness about autism and raising funds for research into the causes and treatment for autism.

Autism Toolkit

Jeff Sell — Sat, 22 Sep 2007 18:34:09 EDT

The American Academy of Pediatrics has developing a Toolkit for
Clinicians called Autism: Caring for Children with ASD. It looks very
thorough and has supporting documentation. Anyway, if you are
interested in looking at it, the website is www.aap.org/bookstore. Or
you can call tool free at 1-888-227-1770.

Database lets Summit County reunite unidentified people with families - Karen Farkas' Aging Matters

Jeff Sell — Sat, 22 Sep 2007 18:32:30 EDT

Database lets Summit County reunite unidentified people with families - Karen Farkas' Aging Matters Saturday, September 15, 2007

If Summit County seniors with dementia or an inability to communicate wander or become lost, police can use an innovative computer program to reunite them with their families.

Take Me Home, sponsored by the Summit County sheriff's and prosecutor's offices, is a database that contains vital information about a person, including contacts and a photograph.

If someone is discovered anywhere in the county and has no identification, an officer enters a description, and photographs pop up. If one matches, a contact is called.

The program was developed by police in Pensacola, Fla., for children with autism and other developmental disorders that made it difficult for them to communicate. Summit County Prosecutor Sherri Bevan Walsh and her spokeswoman, Laurie Cramer, have children with autism and contacted the Sheriff's Office to see if the free software could be used in the county.

Cramer said that about 75 children and adults have registered since April and that that number will rise as they go to schools and senior centers.

Officials in several counties, including Cuyahoga, have contacted Summit County about the program, and Bevan Walsh has contacted Ohio Attorney General Marc Dann about taking it statewide, Cramer said.

"The hardest part is populating the database, but it is something every law enforcement agency can do," she said.

Anyone in Summit County interested in signing up can call Cramer at 330-643-8386.

Matching employ ees and employers:

Job seekers age 40 and older are invited to meet employers from 9 a.m. to 2 p.m. Wednes day at the Tangier res taurant, 532 W. Market St., Akron.

The Mature Workers Job Fair is sponsored by the Senior Employment Center, a division of Mature Services Inc. About 50 employers are expected. Admission and parking are free.

Those who attend should be prepared to distribute résumés, meet employers and be interviewed. Employment counselors from the Senior Employment Center will critique résumés and provide help. Employers are seeking a wide variety of skills.

More than 1,100 people seeking employment attended last year. For more information, call the center at 330-762-8666, Ext. 178 or check its Web site at

matureservices.org.

Time is running out for elderly and disabled Ohioans to apply for a property tax break. The Homestead Exemption allows any homeowner who is age 65 or older or permanently disabled to shave $25,000 of their home's market value from property taxes. It is expected to save homeowners about $400 a year.

More than two-thirds of the 550,000 who qualify have applied. The deadline is Oct. 1. Forms are available at county auditor offices.

Taxpayers who miss the Oct. 1 deadline may still claim the credit for property taxes to be paid in 2008 but will need to file a late application between Jan. 8 and June 2, 2008.

Insurer ordered to pay for autism care -- New Jersey

Jeff Sell — Sat, 22 Sep 2007 18:30:22 EDT

Insurer ordered to pay for autism care
Friday, September 14, 2007

By LINDY WASHBURN
STAFF WRITER

The state Supreme Court has ordered the insurance program for state employees to pay for intensive therapies for a child with autism -- therapies that go beyond what a school district must provide for his education.

The court's decision came with breathtaking speed, less than 24 hours after it heard oral arguments on Tuesday.

Jake Micheletti, a 5-year-old who was diagnosed at age 3 with autism, will receive insurance coverage for behavioral and other therapies he needs, as well as reimbursement for the care his family already had paid for.

Arguing on behalf of his son before the high court was his father, Joseph Micheletti, a deputy attorney general who handles employment discrimination matters. He was opposed by another deputy attorney general defending the state's position.

"It makes a huge difference to us," Micheletti said. The family had taken a second mortgage on its Hunterdon County house to pay for additional behavioral, speech and occupational therapy beyond what its school district provided for Jake. The Michelettis had nearly exhausted their financial resources and were preparing to stop Jake's therapy.

In Autism's Grip

Complete coverage: In Autism's Grip

Forum: A place for parents, teachers and others to discuss the broad spectrum of autism's effects.

* * *By the numbers

• One of every 94 children in New Jersey has autism.

• Boys: 1 in 60

• Girls: 1 in 250

• National rate: 1 in 150

The case applies specifically to the State Health Benefits Program, but it highlights the legal requirements of all insurance carriers in New Jersey. Under the Mental Health Parity Act of 1999, insurance carriers must provide the same coverage for mental illness that they do for any other sickness. The law specifically includes autism as a disorder that must be covered equally.

"We would like to see all insurance companies play by these rules," said Art Ball, a spokesman for the New Jersey Center for Outreach and Services for Autism (COSAC). "Our hope is that this makes it easier for us to work with insurance companies and the State Health Benefits Program so that other families don't have to go through this problem in getting benefits for autism."

"This will be a tool that people can use" when insurance companies deny coverage for autism treatments, Micheletti said.

Under federal law, school districts must provide an appropriate education to all children. But families that want to give their children more therapy than the school system deems necessary have had to pay for it themselves or through private health insurance.

"We're still in the process of evaluating the potential implications of the order and what it could mean to the overall program," said Tom Vincz, a spokesman for the state Treasury Department, which oversees the state benefits program. The program insures more than 800,000 state, county, municipal and school employees and their families.

Horizon Blue Cross and Blue Shield of New Jersey is the administrator of the self-funded state insurance plan to which Jake Micheletti belongs, though the state determines what is covered and what is not. "I'm not sure it [the ruling] applies beyond this individual case," said Thomas Rubino, a Horizon vice president.

Horizon and Aetna say they already comply with the mental-health parity law and provide required benefits for their commercial policyholders, depending on what package customers have purchased.

The state had argued before the appellate court that Jake's therapy was not eligible for coverage because it didn't "restore" him to a previous level of functioning, as speech therapy would restore a stroke victim's previous ability to speak. The state's attorneys also said the state could exclude coverage for autism to hold down taxpayer costs.

"We were facing the end of Jake's chances at a life, literally," said Elizabeth Micheletti, the boy's mother. The family had chosen to pay for Jake's additional therapy privately when he was diagnosed, while pursuing appeals to their benefits plan and then legal remedies.

"We couldn't wait, because therapy delayed would be of no use to him," Elizabeth Micheletti said. The younger an autistic child is when he begins therapy, the better the chances of improvement. New neural pathways can be created to allow him to interact socially and behave more like a typical child.

Although the appellate court found last January that the state should pay for Jake's therapy, the state did not abide by the decision. The appellate court then refused to enforce its own action. That led to the appeal before the state Supreme Court.

As a new kindergartner, Jake now gets nine to 10 hours of therapy each week, in addition to his daily time with an aide in class and his school-based therapies. The additional therapy costs the family $650 to $700 weekly, Joseph Micheletti said.

"He is doing exceptionally well," said Elizabeth Micheletti. "There are indications that he will 'recover' from autism." His math and reading skills are advanced for his age, she said. The couple have two other sons.

After listening to the oral arguments before the Supreme Court, Elizabeth Micheletti said, "I cannot describe what it felt like to be in that room, having Joe talk about what we have gone through for Jake. It was almost therapeutic just to have someone listen and say, 'This is wrong.' "

E-mail: washburn@northjersey.com

McCarthy Calls Carrey 'Autism Whisperer'

Jeff Sell — Fri, 21 Sep 2007 14:02:12 EDT

McCarthy Calls Carrey 'Autism Whisperer'

14 hours ago

NEW YORK (AP) — Jenny McCarthy worried about finding a good man after her son, Evan, was diagnosed with autism two years ago. Then Jim Carrey came along. "Beyond doubt it was written in the stars that Jim and Evan were a pair," the 34-year-old actress tells People magazine in its Oct. 1 issue.

"He's actually helped Evan get past some obstacles I couldn't. I sometimes call him the autism whisperer. He speaks a language Evan understands, and Evan feels safe with him."

McCarthy and Carrey, 45, went public with their romance last year. Though she's in love, McCarthy has no plans to marry the twice-divorced actor.

"There will be no certificate," she says. "It goes far deeper than that. Jim came into our life with an open heart and open arms. He's learned a lot about autism. He listens. The power of listening. It can move mountains."

McCarthy and film director John Asher filed for divorce in August 2005, after six years of marriage. Earlier that year, Evan, now 5, was diagnosed with autism.

McCarthy, who starred on MTV's "Singled Out," details Evan's progress in her new book, "Louder Than Words: A Mother's Journey in Healing Autism."

She says Carrey was curious about Evan — in a good way. But she was nervous about introducing them.

"He was intrigued," she says. "He asked questions. Still, it took me about a few months to bring Evan over."

On the Net:

People: http://www.people.com

Schools lagging on autism--IOWA

Jeff Sell — Fri, 21 Sep 2007 13:56:13 EDT

Schools lagging on autismBy: Zhi Xiong - The Daily IowanPosted: 9/20/07Autism spectrum disorders affect as many as 1 in 150 8-year-old children in some areas of the country, according to latest numbers from the Centers for Disease Control and Prevention. More than 90 percent of them grow up to attend public secondary schools.

But educators are lagging when it comes to providing effective intervention at alllevels - preschool, elementary, and secondary - a recent study shows.

Special education receives approximately 9 percent of Iowa's elementary- and secondary-education budget, while Area Education Agencies' special education programs receive around 3 percent, according to the latest statistics.

It is not clear whether funding is the issue at hand, said Sue Baker, the autism services consultant at the UI Regional Autism Services Program. Though she said other colleagues have also seen the published research, any changes to current systems takes time to analyze and implement.

"The findings are not going to change what we do tomorrow, but it's a long-range goal," she said.

The analysis of 55 studies of school-based social skill learning, published in the Journal of Remedial and Special Education, consistently shows therapy such as changing the child's social and physical settings, peer-mediated interventions - in which other children are trained to interact with disabled peers - and even child-specific plans did not significantly improve behavior.

"What they're reporting in schools is there are goals being met and independence is increasing, but this is in a trained context," Baker said.

The National Institutes of Health hiked funding for autism research to approximately $101 million - a more than 80 percent increase - for fiscal 2007. Yet the number of children with autism spectrum disorders, from severe autistic disorder to milder Asperger's syndrome, most notably characterized by impaired social interactions, are still increasing exponentially.

"The field is not advanced enough to tell us all that we as educators need," Baker said.

The child-specific method is used in the Iowa City School District, which includes tailored social skills instruction and schedules to help children "navigate their environment," said Cheryl Kiburz, the director of special services.

Researchers found children who received intervention in school were generally able to use their newly learned behavior in controlled settings. The problem is generalization, or using them in new environments.

One study recommended increasing frequency of interventions and closely matching strategy with specific skill deficits.

"A lot of teachers don't go that extra length," Baker said. "Does that kid use his greetings? Yeah - in the halls where we taught him. But can he do it in a birthday party or community outing or work setting?"

E-mail DI reporter Zhi Xiong at:
zhi-xiong@uiowa.edu

7 new autism laws in NJ signed by Governor Corzine this week

Jeff Sell — Tue, 18 Sep 2007 22:43:10 EDT

7 new autism laws in NJ signed by Governor Corzine this week"The Governor signed A4055/S2558, providing for teacher training in awareness and instruction methods for students with autism and other developmental disabilities for candidates for teaching certificates, current teachers and paraprofessionals. The Commissioner of Education will develop recommendations to address a variety of issues including the characteristics of students with autism and other developmental disabilities; curriculum planning, assistive technology; and inclusive educational practices.

- A4056/S2568, requiring the Early Intervention Program in the Department of Health and Senior Services to address the specific needs of children with autism spectrum disorders and their families. These activities involve developing guidelines for health care professionals to use in evaluating infants and toddlers for autism, ensuring the timely referral by health care professionals of infants and toddlers suspected of being on the autism spectrum to the Early Intervention Program and collecting data on statewide autism screening, diagnosis, and intervention programs and systems.

-A4057/S2559, establishing the New Jersey Adults with Autism Task Force in the Department of Human Services (DHS). The purpose of the task force is to study, evaluate, and develop recommendations relating to specific actionable measures to support and meet the needs of adults with autism. These include job training and placement, housing, and long-term care.

- S/698A4054, which makes changes to the Governor's Council for Medical Research and Treatment of Infantile Autism, renaming it the Governor's Council for Medical Research and Treatment of Autism.

-A4059/S2569, extending funding for autism medical research and treatment. The bill eliminates the five-year “sunset” for the $1 surcharge established under P.L.2003, c.144 for each motor vehicle fine and penalty imposed by the court, which is deposited in the “Autism Medical Research and Treatment Fund.” The fund provides the financial support funding for the grant and contract awards of the Governor’s Council for Medical Research and Treatment of Autism.

- A2306/S2723 requiring the Department of Health and Senior Services (DHSS) to maintain a registry of reported autism diagnoses. The DHSS, in consultation with the Department of Human Services, will maintain an up-to-date registry to include a record of all reported cases of autism that occur in New Jersey; each reported case of autism in which the initial diagnosis is changed, lost, or considered misdiagnosed; and any other information DHSS deems relevant and appropriate to conduct thorough and complete epidemiologic surveys of autism, to enable analysis of this problem, and to plan for and provide services to children with autism and their families.

-A2291/S690, which establishes an Asperger's Syndrome Pilot Initiative in the Department of Human Services. The initiative will provide vocational, educational and social training services to persons with Asperger's Syndrome. This will be accomplished through community-based service sites which offer appropriate support; guidance and education that will enable these individuals to further their education achieve gainful employment and become broadly competent adults who are able to lead fulfilling lives."

via state.nj.us/governor/news/

‘In the right hands’: Kids with autism getting their own school

Jeff Sell — Tue, 18 Sep 2007 22:39:19 EDT

‘In the right hands’: Kids with autism getting their own school Sep 15, 2007 @ 08:35 PMBy Geri NikolaiRRSTAR.COMROCKFORD -

A few weeks ago, school kids filed into classrooms where the teacher and setting were just right for them. The kindergarteners got pint-sized furniture and ABCs on the walls. Preteens had teachers who understand their learning and emotional needs.

High schoolers went to a more adult setting as they prepare for independence.

That situation has never been in place for 7-year-old Sam Haas of Roscoe. Sam has autism. He couldn’t handle a regular classroom and found it difficult in special education programs offered by school districts.

Monday, Sam finally will go to a school where he fits, the new Autism Therapeutic Day School opened by Easter Seals of Metropolitan Chicago at its Rockford branch, 650 N. Main St. Monday will be the first day of school there for 10 Rock River Valley children.

Eventually, the school could serve 50 3- to 21-year-olds.

Sam’s mother, Heather Haas, couldn’t be happier. Sam has been going to the school for tutoring for two weeks. She said he loves it.

“He throws on his backpack and says, ‘Let’s go to school,’” Haas said. “He is largely nonverbal, so for him to say that, it’s fantastic.”

Haas has nothing but praise for the special ed program in Roscoe schools, where Sam attended since the family moved here from Texas in March. It’s just that his needs go beyond what that district could provide, she said.

“He has had some behavioral issues during tutoring at Easter Seals, and they dealt with it so well,” Haas said. “It’s been such a huge relief to know he is in the right place, the right hands, and we as his family are going to get support from the school as well.”

Learning life, social skills
At the Therapeutic Day School, Sam and the other students will be taught life skills as well as academics. Their days will include speech, language, music and art therapy, sensory integration exercises or other services they need. The entire staff, including teachers and aides, a pediatric nurse, social worker, behavior interventionist and medical director, has been trained to serve children whose primary diagnosis is autism. Clinical services will be provided by the University of Illinois College of Medicine in Rockford.

Helping the students learn to socialize will be a big part of the experience because the pupil-teacher ratio will be low, initially about 2-to-1, said Jennifer Sims, administrator of the school.

Sims, a special-education teacher who has an administrative certificate and training in behavior disorders and learning disabilities, worked for the West Central Illinois Special Educational Cooperative for seven years.

The school will run year round, with regular school year holidays and vacations between the seasons. Hours will be 9 a.m. to 2:30 p.m. and, soon, an after-school care program will be offered by the Rockford Park District.

Working with school districts
Most of the initial students come from smaller school districts around Rockford that don’t have elaborate special ed offerings, Sims said. Tuition, which comes to $180 a day, is shared 50-50 by the state and the home school district of the students.

Easter Seals Executive Director Jim Powers said students have to be referred by their local school districts and have to have an individual education plan. The Therapeutic School will continue to work closely with the local school districts, Powers said.

The Rockford school, and another opening in Waukegan, are the third and fourth schools for children with autism operated by the Metropolitan Chicago Easter Seals organization. The Chicago-based agency, which merged with the Rockford Easter Seals in April 2006, spent $415,000 renovating the 50-year-old building on North Main to get it ready for the school.

The demand for therapeutic schools continues to grow.

In 1992, one in 10,000 children was diagnosed with autism, Powers said. Today that number is one in 125, and the number of autistic children grows by 10 percent to 17 percent each year.

“Better diagnosis might account for 50 percent of that increase but as for the rest, right now, nobody knows,” Powers said.

Staff writer Geri Nikolai can be reached at 815-987-1337 or gnikolai@rrstar.com

NDP vows funding for all children with autism; Liberals say more therapists needed

Jeff Sell — Tue, 18 Sep 2007 22:37:41 EDT

NDP vows funding for all children with autism; Liberals say more therapists needed

3 days ago

TORONTO (CP) — The thorny issue of public funding for treatment of children with autism leapt into the Ontario election campaign Saturday, as the New Democrats announced a proposal to provide blanket therapy for all children who need it right in their classrooms - a strategy the Liberals say is unsustainable.

An NDP government would provide publicly funded Intensive Behavioural Intervention - a very expensive, one-on-one treatment - in classrooms for all autistic children, Leader Howard Hampton said during a campaign stop.

Speaking at a park in a suburb north of Toronto, Hampton said he would clear the waiting list that 900 children currently are on within three years. About 1,400 kids are funded for the IBI treatment; many other families pay out of pocket.

"With our Ontario autism strategy, a child who qualifies for IBI treatment will benefit from the day they qualify," he said.

"No more long waiting lists, no longer the need for families to mortgage or sell their homes to pay for their children's therapy."

But, in an interview, Children and Youth Services Minister Mary Anne Chambers said the issue can't be solved by tossing money around.

"There simply aren't enough autism support providers in Ontario to provide one-on-one treatment with every child who needs it," she said.

The Liberal government has been working to hire more specialists and establish and expand college training programs for therapists, Chambers said, noting that spending on autism has tripled since the party took power in 2003.

Sorting out what to do about funding for treatment for children with autism has been a sticky issue for the Liberal government.

Critics have said the Liberals haven't done enough to help parents cover the costs, yet the government spent $2.4 million over seven years - including several under Progressive Conservative rule - to fight parents suing for treatment for kids over six.

Before July 2005, autism treatment was extended only to children under the age of six. The change was the result of a campaign promise by Premier Dalton McGuinty in 2003.

While schools are required to provide a broad range of Applied Behavioural Analysis therapies, the decision on whether to allow IBI currently remains at the discretion of school boards and principals.

One mother, Mary Turner of Bradford, Ont., said she is tired of Liberal politics and policies and wants only what's best for the children.

"My school is fantastic with my kids, and they would love to help them more, but the funding just isn't there," said Turner who has three children with autism whom she wishes could receive treatment in the classroom.

"It would be nice if the politics and policies weren't there, and they were looking after the best interests of the kids, and we could actually get my private therapist into the school to help the school staff," she said of current government policies.

Turner said she needs to pull her daughter out of school to get the 20 hours of treatment the government allows because the classtime and therapy combined leaves the girl "no time left to be a child."

Cindy DeCarlo, the mother of a five-year-old autistic boy and co-founder of the Alliance for Families with Autism, said while she's pleased by the attention being given to autism, she is concerned about having an adequate infrastructure to support the children and therapists.

It's encouraging that the three main political parties are considering the needs of families touched by autism, but parents shouldn't be given false hope, she said.

"Regardless of who gets elected, there's a lot of work to be done and it's not going to be a Band-Aid solution," she said.

Progressive Conservative Leader John Tory released an autism policy in February, saying his party would clear the wait list for children under six, continue support for school-age children, and provide a variety of funding and service options to parents.

The Conservative policy would cost an additional $75 million annually. The NDP policy would require an additional $100 million each year on top of the $116 million the government now spends.

Hampton's announcement was timed to coincide with a provincewide Day of Action for children with autism, sponsored by the non-partisan Ontario Autism Coalition.

Co-founder Laura Kirby-McIntosh, who has a seven-year-old son with autism, said her group held rallies in six cities to raise awareness and make sure autism is on the political agenda.

"We're hoping that by visiting so many Liberal offices today we'll provoke a response out of them," she said.

The coalition, one of several broad-based autism groups in the province, is calling for an end to the wait list, a framework to bring IBI therapists into schools, and a formal accreditation system for therapists, Kirby-McIntosh said.

Congress Returns to Busy Fall Line-Up

Jeff Sell — Fri, 14 Sep 2007 13:47:22 EDT

Congress Returns to Busy Fall Line-Up

Representatives and Senators are back at work, following the month-long August recess. They have their work cut out for them, as several priority bills must be enacted in the coming weeks, including the Children’s Health Insurance Program, the annual appropriations bills, reauthorization of the No Child Left Behind Act and other legislative priorities.

For the autism community, the annual FY 2008 appropriations bills are of particular importance. The House passed its version of the legislation earlier this summer, providing increases to several key autism programs at the Centers for Disease Control and Prevention (CDC), the National Institutes of Health, and the Health Resources and Services Administration. The Senate bill has even greater increases for autism programs, but has not yet been voted on by the full Senate.

By law, appropriations bills must be passed by September 30th, the end of the fiscal year. If that does not happen, Congress will have to pass a “continuing resolution” to ensure that the federal government keeps operating. Under these pressures, it is difficult to predict the final outcome, but ASA will continue its efforts to ensure that critical autism programs receive the funding increases they need.

House Begins Consideration of the No Child Left Behind Act

In 2001, Congress and the President enacted the No Child Left Behind Act to increase student achievement and bridge the education gap. While the measure had broad popular support, it has received much criticism in the past six years amid concerns that teachers were teaching to the test and were not given enough flexibility in administration of the law.

Another key concern of the bill is the treatment of children with disabilities. The Department of Education has adopted several regulations that undermine the ability of children with disabilities to receive a quality education. ASA is working with Easter Seals and other partners to ensure that all children with disabilities receive a quality education, are taught by well-qualified teachers and are held to appropriate accountability standards.

Congress Continues Discussion on CHIP Reauthorization

House and Senate leadership met this week to continue discussion on reauthorization of the Children’s Health Insurance Program, which provides health insurance benefits to low-income children. The Senate bill will provide $35 billion in additional funding, which would cover an additional four million children under the program. The House measure is proposing $50 billion to increase coverage to five million additional children.

The House measure also includes provisions to strengthen the Medicare program, eliminate a proposed 10-percent cut to physician payments and a range of other provisions. In general, the House bill is more generous— especially to individuals with developmental disabilities and their families—and more expensive. The total legislative package (both CHIP and Medicare) costs more than $90 billion. A side-by-side comparison of these bills can be found at http://www.familiesusa.org/assets/pdfs/medicaid-coalition-stuff/crs-side-by-side.pdf.

The program must be reauthorized by September 30, 2007, and both House and Senate leadership have vowed to resolve their differences and pass the bill by that deadline. The President, however, has threatened to veto both measures, citing that they are far too expansive and do not focus enough on low-income children.

UK Study Finds Autism Link to Womb

Jeff Sell — Fri, 14 Sep 2007 13:45:34 EDT

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September 14, 2007

ASA News

10-Year-Old Wins Washington State Bowling Title!

Chance Mair from Marysville, WA, who has Asperger’s Syndrome, won first place in the Washington State Pepsi Bowling Finals in Pullman, WA, this past May. Bowling for 4 years, Chance started bumper bowling on a summer league in his hometown. Although his parents were initially apprehensive, it turned out Chance loved bowling and improved enough to bowl without bumpers. He began getting consistent scores in the 80s, 90s and even an occasional 100. In March 2006, he went to the Washington State Pepsi semi-finals in Tacoma, WA, followed by the state competition in Olympia. Each bowler that bowls 25 pins over their average wins a ribbon; Chance won four for all of his games. The next day, Chance’s picture was on the front page of the sports section in the Olympia newspaper holding up his ribbons!

At this year’s Washington State Pepsi Bowling Finals, Chance finished with a first game score of 109, a second score of 117 and a third score of 126, his highest ever. Chance won a $500 scholarship, a shirt and a plaque, but, according to his mother Christine, what Chance really won was the respect of his peers and adults who didn’t believe he could accomplish something like this.

Advocacy

Congress Returns to Busy Fall Line-Up

House Begins Consideration of the No Child Left Behind Act

Congress Continues Discussion on CHIP Reauthorization

Atlantic Autism Alliance to Hold Meetings

On September 23-26, 2007, a delegation led by the Celtic Nations Autism Partnership (CNAP) and ASA will be holding a series of meetings in Washington D.C., to explore ways in which our nations can improve the lives of individuals with autism on both sides of the Atlantic.

This series of meetings, called the “Atlantic Autism Alliance,” is an opportunity to provoke fresh thinking in both the U.S. and Celtic nations on adapting a rights-based approach for inclusive lifestyles for individuals living with autism and to build a strong alliance with partners that supports the exchange of experiences and knowledge. The unity of nations within CNAP is further enhanced by its new friendship with ASA.

“We are honored to host the entire Celtic Nation Delegation, led by Eileen Bell (former speaker of the NI Assembly) and The Lord Maginnis of Drumglass (vice-president, Autism NI [PAPA]) and look forward to the collaboration that this event will lead to,” said Lee Grossman, CEO of ASA. Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA), co-chairs of the Congressional Autism Caucus, have been instrumental in planning this event and will be working with the group to find ways in which a cross-Atlantic collaboration can become the catalyst for promoting the cause of autism.

Research

UK Study Finds Autism Link to Womb

(condensed from Telegraph.co.uk, Sept. 11, 2007)

Babies exposed to high levels of testosterone in the womb are more likely to develop autistic traits in childhood, scientists say. The soon-to-be-published findings are the strongest indication yet that one of the triggers of autism could be higher than normal concentrations of the male hormone in fetal fluid. The findings support the theory that autism is an “extreme version” of the male brain and points to it being mainly a genetic condition. Previous studies have revealed that testosterone levels in the womb can affect both brain development in animals and social development in childhood.

Professor Simon Baron-Cohen of Cambridge University, one of the world's leading experts on autism, revealed initial details of his new study at the British Association Festival of Science. Prof. Baron-Cohen said, “The idea that fetal testosterone may play a causal role in autism is an existing hypothesis. There's no evidence that it's a causal factor, but this research is certainly consistent with that hypothesis.”

For the full story, including details regarding the study, visit http://www.telegraph.co.uk/earth/main.jhtml?xml=/earth/2007/09/11/sciaut111.xml

Atlantic Autism Alliance ti hold meetings

Jeff Sell — Fri, 14 Sep 2007 13:44:44 EDT

Atlantic Autism Alliance to Hold Meetings

WEINBERG/CONIGLIO AUTISM BILLS SIGNED INTO LAW

Jeff Sell — Thu, 13 Sep 2007 00:21:36 EDT

WEINBERG/CONIGLIO AUTISM BILLS SIGNED INTO LAWBy Cara Noel - September 12, 2007 - 3:55pm Tags: Loretta Weinberg, Joseph Coniglio, Autism,Release Date: September 12, 2007WEINBERG/CONIGLIO AUTISM BILLS SIGNED INTO LAW WEST WINDSOR – A bill package sponsored by Senators Loretta Weinberg and Joseph Coniglio, designed to increase and improve available resources for families and individuals living with autism, was signed into law today by Governor Jon Corzine. The bills were signed at the Eden Institute, a non-profit organization which provides educational and vocational services to adults and children living with autism. Autism is a neurological developmental disability that impacts brain development in the areas of communication skills, social interaction and cognitive function. People living with autism often struggle with verbal and non-verbal communication and social interaction. “According to federal statistics, New Jersey has the highest number of autism cases in the nation,” said Senator Weinberg, D-Bergen. “We are still learning about the autism spectrum disorders, but while we are learning, we must be able to provide much-needed assistance to families living with autism. As the number of residents living with autism increases, we must have the resources in place to provide them with support programs as we work to find ways of decreasing autism rates in New Jersey and around the world.” “The number of autism cases is increasing here in New Jersey, and around the world,” said Senator Coniglio, D-Bergen. “Statistics say that one child in 94 will be born with autism, and we must be prepared to provide their families with the support and resources they need.” One measure, S-2569, sponsored by Senators Weinberg and Coniglio, extends funding for autism medical research and treatment. The new law amends the law that had been in place by removing the five-year sunset provision for a $1 surcharge on each motor vehicle moving violation to be deposited in the “Autism Medical Research and Treatment Fund.” The law will help provide a permanent funding source for autism research. A second measure, S-2568, concerns early intervention programs for children with autism. Under the new law, the Department of Health and Senior Services’ Early Intervention Program (EIP) will be responsible for creating initiatives to help address the needs of autistic children and their families. The EIP will work with the Governor’s Council for Medical Research and Treatment of Infantile Autism and other autism groups around New Jersey to develop treatment guidelines for health care professionals to follow when working with autistic infants and toddlers. The EIP will also be responsible for referring autistic infants, toddlers and their families to different schools, community groups and organizations offering programs designed to meet the needs of children living with autism. “When dealing with autism, early intervention is important,” said Senator Weinberg. “If families of autistic infants are aware of available educational and life skills training, these children can learn how to deal with the disease at an early age. The law will also help to provide support systems for families of autistic children, so that they can share experiences, concerns, and learn more about the autism spectrum disorders.” “All too often, parents of special needs children are left feeling helpless and unable to provide the educational opportunities and support their children need,” said Senator Coniglio. “This new law will create support groups, and help make families aware of the resources that are available to help provide their autistic children with the educational training they need to become productive members of society.” A third measure, S-2558, will make training in autism awareness a condition of teacher licensure. The law calls upon the Commissioner of Education to work with the Commissioner of Health and Senior Services and autism education groups to develop coursework dealing with the characteristics and needs of autistic students. The coursework will be included in the curriculums of every college or university in New Jersey offering teacher or paraprofessional certification. Another Weinberg/Coniglio-sponsored measure, S-690, calls upon the Department of Human Services to develop statewide educational, vocational and social services to help benefit adults living with Asperger’s Syndrome. Asperger’s Syndrome is a developmental disorder characterized by autistic-like behaviors, such as deficiencies in social and communication skills. Those living with the disorder tend to be self-absorbed and often display obsessive or repetitive routines. Asperger’s differs from traditional autism in that it is not usually diagnosed until adulthood, said Senator Weinberg. “By making these resources available to residents living with Asperger’s Syndrome, they will be able to gain increased independence and work toward living as self-sufficiently as possible,” said Senator Coniglio. A similar measure, S-2559, was also signed. This new law establishes the New Jersey Adults with Autism Task Force within the Department of Human Services, to study, evaluate and develop recommendations for support, job training and placement, housing and long-term care programs for autistic adults. Governor Corzine also signed, S-698, a measure to increase the membership of the Governor’s Council for Medical Research and Treatment of Autism. Lastly, S-2306, which requires the Department of Health and Senior Services to maintain a registry of reported autism diagnoses, became law today. “New Jersey’s high autism rate is an incentive to take the lead on autism research throughout the nation,” Senator Weinberg said. “New Jersey is a world leader in many areas of medical research, and it is my hope that this bill package that was signed today will help increase awareness and funding for autism research,” said Senator Coniglio.###

The War...

Jeff Sell — Wed, 12 Sep 2007 22:06:26 EDT

According to the Washington Post, many experts have questioned data behind the general's optimistic assessment of the war, accusing the Pentagon of "cherry-picking positive indicators." Even in December 2006, the Iraq Study Group reported "significant under-reporting of violence."

In fact, this has been the bloodiest summer for American soldiers since the war began.

And when it comes to the Iraqi government, there's even less progress. The surge was supposed to help give breathing room in the political process, but the U.S. Government Accountability Office (GAO) found that two and a half years after the first election, the Iraqi government has met just three of the 18 benchmarks set by Congress.

Kenneth Katzman, author of a report for the non-partisan Congressional Research Service, put it this way:

"My assessment is that because of the number and breadth of parties boycotting the cabinet, the Iraqi government is in essential collapse. That argues against any real prospects for political reconciliation."

Add your name to the list of people telling Congress that this isn't a war that's going to be won with military might, now or six months from now. It's time to change the course and redeploy our troops from Iraq:

http://www.democrats.org/TimeIsUp

"Putting the Pieces Together" Autism/Disability Resource Fair & Conference

Jeff Sell — Wed, 12 Sep 2007 22:00:46 EDT

"Putting the Pieces Together" Autism/Disability Resource Fair & ConferenceSaturday, October 6, 2007

The Resource Fair is FREE and from 8a - 1:30pm.

The Conference requires pre-registration and is from 9:30a - 5p. See www.autism-society.org/chapter1006 for more information. Click on "View Documents".

Keynote Speakers:

Jeff Sell Director of Goverment Relations for the Autism Society of America

Dr. Stephanie Cave from Baton Rouge on the DAN Protocol and Vaccinations

Steve Rhatigan of Stemark & Associates - Estate & Financial Planning for Special Needs

Louis Geigermann of National ARD/IEP Advocates will talk on Special Education Law

Many workshops covering a variety of topics are offered for the afternoon! Scholarships available - see specific information below!Both conferences are at the same location for your convenience!

Remembering Harley Thomas

Jeff Sell — Wed, 12 Sep 2007 21:41:26 EDT

Remembering Harley Thomas

Harley L. Thomas, a dear husband, father, friend, and colleague, died of heart failure at Adventist Hospital in Rockville, MD, on Tuesday, September 4 at age 68. Harley was associate director for Health Policyhis 10-year anniversary with Paralyzed Veterans of America (Paralyzed Veterans) being September 3.

"Paralyzed Veterans' family has lost an outstanding member," said President Randy L. Pleva, Sr. "As in all families, when a family member is taken away, it can weaken the circle, but the memories we have of that loved one live on. Harley's compassion for and dedication to his fellow veterans will forever strengthen the circle that is Paralyzed Veterans. His actions day-in and day-out demonstrated his love for Paralyzed Veterans. He will be truly missed, but will forever have our gratitude for all that he did to positively impact the lives of so many."

Harley and his wife, Nancy Starnes, lived in Arlington, VA. They met in 1996, when Harley was a guest judge for the Miss Wheelchair America Pageant. Ever the gentleman, Harley wrote notes to all the contestants after the pageant. Miss Wheelchair New Jersey, Nancy Starnes, responded, and a 10-year courtship ensued. Harley and Nancy were married while on a Princess Cruise on February 24, 2007.

Born and raised in Utah, Harley joined the U.S. Marine Corps at a very young age, earning a discharge at age 19. He then served 18 years in the U.S. Navy, retiring in 1976 as a chief petty officer.

In the service, he was attached to the Defense Communications Agency, and was deployed to Colorado, Hawaii, Japan, Vietnam, San Diego, and Norfolk and Reston, VA. He was an early expert in large mainframe computers, and continued in the information technology industry in California after leaving the Navy. He earned a business degree from the University of Virginia while in the service.

While stationed in Japan, Harley became active in motorcycle racing and continued racing for many years. He acquired a spinal cord injury in a motorcycle accident in Mexico in 1982, using a wheelchair since that event.

These circumstances led him to new frontiers as an advocate for veterans and other people with disabilities. He co-founded Colorado Sports for the Physically Challenged, Inc. (CSPC), a sports camp for children and youth with disabilities, in 1985, and was executive director of the Mountain States Chapter.

In 1997, Harley moved to Washington, DC, to become the associate director of Paralyzed Veterans' Legislation Program. He skillfully coordinated The Independent Budget annually with three other veterans service organizations, testified before Congress, and represented Paralyzed Veterans nationwide at meetings and conferences. He chaired the VA's Volunteer Service Advisory Committee and served on the board of the Paralyzed Veterans Education Foundation. Harley was extraordinarily social and loved Washington "grip and grin" receptions.

"Harley Thomas exemplified what Paralyzed Veterans of America is all about. Following his spinal cord injury, not only did he maximize his independence and live life to its fullest, but he also committed himself to helping others," said Doug Vollmer, associate executive director, Government Relations Department.

"Beginning with his outreach efforts to develop programs for children with disabilities, through his work on the national staff as a health policy analyst, Harley always was involved in making life better for people with disabilities and his fellow veterans.

While Harley will be deeply missed, his efforts and legacy will last by his having made this a better place for everyone."

Harley helped to identify disability-friendly communities as a judge for the Accessible America Award for the National Organization on Disability. He was immediate past president of the National Spinal Cord Injury Association and had served on the board of the ENDependence Center of Northern Virginia.

Harley also specialized in genealogy. He traced his ancestry back to 12th century England and Wales and then managed the family tree website. For the Payson High School Class of 1957, he managed a newsletter, yearbook, and websiteand produced a remarkable yearbook for their 50th reunion this month. Harley loved travel, wine, good friends, good times, and family.

Harley is survived by his much-loved wife, Nancy; five children;

23 grandchildren; great-grandchildren; and countless friends.

SOURCE: Paralyzed Veterans of America

New Jersey initiatives target nation's highest autism rate

Jeff Sell — Wed, 12 Sep 2007 09:56:33 EDT

New Jersey initiatives target nation's highest autism rateTOM HESTER Jr. The Associated Press

TRENTON, N.J. - Madeleine Goldfarb thinks about her 13-year-old autistic son and how quickly time flies.

"I can only be reminded of how quickly the past 10 years has gone by, and in eight years he will be considered an adult," Goldfarb said, counting the years since her son was diagnosed with what she described as "high-functioning autism."

The Livingston mother recently told state lawmakers she worries as her son approaches adulthood, knowing those with autism often find themselves lacking help once they turn 21.

"Many of our families are left on waiting lists," Goldfarb said. "Our kids go home and they watch videos day after day after day."

But she's hopeful of seeing progress now that an expert panel will soon begin to study the needs of autistic adults in a state battling America's highest autism rate.

That panel, which is expected to study job training and placement, housing and long-term care, is among the initiatives in a package of bills scheduled to be signed into law Wednesday by Gov. Jon S. Corzine. The bills are designed to improve detection, treatment and awareness.

They will establish a statewide autism registry, train of teachers in autism awareness, require pediatricians to screen for autism symptoms, creating the panel to study the needs of autistic adults, expand funding for autism research and treatment and restructure a state council for autism medical research and treatment.

The Legislature approved the bills earlier this year after the largest U.S. study of childhood autism determined 1 in 152 children have the disorder, including 1 in 94 children in New Jersey.

Autism is a complex disorder usually not diagnosed in children until after age 3. It's characterized by a range of behaviors, including difficulty in expressing needs and an inability to socialize. Its cause is unknown.

"New Jersey has taken a significant step forward in its efforts to solve the puzzle of autism," said Assembly Speaker Joseph Roberts Jr., D-Camden, who sponsored the bills.

Autism forums to be held across the state

Jeff Sell — Wed, 12 Sep 2007 09:51:32 EDT

Autism forums to be held acorss the state

September 11, 2007
The Vermont Department of Education and the Vermont Agency of Human Services has released the schedule for five public forums on autism spectrum disorders to be held across the state over the next two months.

Act 35, an act relating to autism spectrum disorders that was passed by the 2007 Vermont Legislature, requires the Education Department and Human Services agency to gather public input for developing a plan to provide services to individuals with the disorders in their homes, schools and communities. Anybody may attend.

Here is the meeting schedule:

-- Sept. 17, 7 to 9 p.m. - Fourth floor Pavilion Conference Room, 109 State St., Montpelier
-- Sept. 25, 7 to 9 p.m. - Hunt Middle School Auditorium, North Avenue, Burlington
-- Sept. 24, 10 a.m. to noon - Northeastern Vermont Regional Hospital, Conference Room 127, St. Johnsbury
-- Oct. 3, 10 a.m. to noon - Asa Bloomer State Office Building, 88 Merchants Row, Rm. 266
-- Oct. 4, 10 a.m. to noon - Springfield State Office Building, 100 Mineral St., Springfield, first floor conference room

If you are unable to attend but would like to provide written input, send comments to Autism Specialist, Department of Disabilities, Aging and Independent Living, 103 S. Main St., Waterbury, VT 05676. The questions to be posed at the forums will be available online at www.dail.vermont.gov.

Autism Study

Jeff Sell — Tue, 11 Sep 2007 23:08:23 EDT

Social Cues Used By Those With Autism Illuminated

Science Daily — New research suggests that individuals with autism take note of social cues such as eye contact more closely than previously thought, regardless of whether or not they have an additional language impairment.

Many researchers believe that poor social understanding lies at the heart of autistic disorders. Testing this hypothesis has traditionally proved tricky as the methods used are often far removed from real life situations and make extra demands on the subject, such as requiring language comprehension and prolonged memory use. Eye-tracking technology is enabling researchers to investigate social processing in situations that are much closer to those experienced in real life.

Dr Courtenay Norbury, from Royal Holloway, University of London and the University of Oxford said about the research: 'What is potentially most interesting about our work is that it shows what people with autism can do given the right circumstances, rather than what they cannot do.’

A previous study using this technology had suggested that when viewing scenes of people interacting, autistic people spent more time fixating on the mouths of people in the scene while non-autistic peers spent more time looking at their eyes. Because the eyes convey rich social information, it was suggested that this aberrant viewing pattern may be the source of the social impairment that characterises autism.

The team, led by Dr Norbury, wanted to explore whether this pattern was limited to those people with autism but unaffected by language difficulties, in other words, those for whom looking at the mouth might be an advantage. They also thought that the avoidance of the eye area might be linked to the familiarity of the material the subjects were asked to view. Dr Norbury will be talking about her research at the BA Festival of Science at York on Friday.

Using sophisticated eye-tracking devices, the team were able to record the eye movements of autistic teenage boys while they watched video-clips of young people interacting in familiar situations. Half the boys had additional language impairments. Unlike the previous study, where the subjects had been shown clips of the black and white film ‘Who’s afraid of Virginia Woolfe’, these specially made clips were designed so the action would be within the realm of experience of the boys.

Dr Norbury explains: ‘We created regions of interest on each frame of the video and calculated when and for how long each participant fixated on that region of interest. By doing this we were able to determine in real time what aspects of the scene captured a viewer's interest.’

To the surprise of the team, they found no significant increase in the time autistic individuals with language difficulties spent looking at the mouth region compared to those without this additional language problem. In addition, the amount of time both groups with autism spent looking at eyes did not differ from their non-autistic peers.

‘Our work suggests that individuals with autism, like their typically developing peers, can and do attend to important social cues such as the eyes when viewing familiar social scenes. The individuals with autism who had additional language impairments tended to spend less time looking at faces generally, but when they did look at the face, they spent significantly more time looking at eyes than mouths.’

The study also highlighted the variation in the length of time people, both autistic and non-autistic, spend looking at other people’s eyes, suggesting that eye contact is only one of many factors affecting social success.

With autistic spectrum disorders affecting approximately 1% of the school-aged population, studies such as this are vital in shaping educational policy and methods of therapeutic intervention. All the boys involved in this research were in full-time specialist education programmes that include initiatives focusing on social skills. These preliminary findings may suggest that such programmes may raise awareness among autistic individuals of the importance of looking at eyes and improve the understanding of the social information provided by eyes and faces, although this remains to be empirically tested.

Dr Norbury adds: ‘Identifying situations in which people with autism may succeed is an important first step in developing educational and therapeutic interventions.’

‘We have also shown significant variation in ‘typical’ viewing behaviour, raising very interesting questions about social deficit theories of autism and highlighting the complexity of the disorder.’

Dr Courtenay Norbury will give her talk, ‘Social communication and eye movements in children’ as part of the session entitled ‘What eye movements tell us about the brain and language’ on 14 September at Vanbrugh V/045, University of York as part of the BA Festival of Science.

Note: This story has been adapted from a news release issued by British Association for the Advancement of Science.

Children With Autism Don't Adapt As Readily To Unfamiliar Faces

Jeff Sell — Thu, 06 Sep 2007 15:38:30 EDT

Children With Autism Don't Adapt As Readily To Unfamiliar Faces
Science Daily --

When it comes to recognizing faces, children with autism aren't as readily adaptable as are normal kids, according to a new article. That's despite the fact that kids with autism can identify similarities among related faces just as well as other children, the researchers found.

The findings, from a study conducted by researchers at the Universities of Bristol, Florence, and Western Australia, might help to explain some of the core social deficits associated with the disorder.

"The faces we see in the world seem to be unconsciously coded in the brain as points in a 'face-space'," said Elizabeth Pellicano of the University of Bristol. "In the middle of that space is the average, or most typical, face, with more distinctive faces lying toward the periphery. Those more distinctive faces are easier to recognize than ones that are closer to average."

When people with normal abilities see a face, their brains automatically locate this new face in face-space on the basis of its deviations from the average--perhaps the face has bushier eyebrows, for example, or a greater distance between the nose and mouth. "The really neat bit is that the precise characteristics of what constitutes an average face are continuously updated based on our experiences in looking at other people," Pellicano explained.

Evidence of that flexibility stems from a phenomenon known as the "face identity aftereffect," in which looking at a particular face even briefly biases perception toward people who have the "opposite identity," she added. Upon seeing a person with thicker-than-average lips, the observer's idea of the typical face accordingly develops somewhat plumper lips. As a result, thinner-lipped people become more distinctive than they would have been before because their lips now differ more from the "norm." In practice, such shifting of facial perception occurs for all aspects of a face simultaneously, not just any particular feature.

The new study finds that children with autism don't experience the face identity aftereffect to the same degree that normal children do. In the study, kids were first introduced to two faces, those of Dan and Jim, each of whom they were told were "team captains." They were then shown faces that looked like Dan or Jim to varying degrees. Those other faces were created with a computer so that the two faces gradually morphed with the mathematically calculated average face.

The kids with autism were just as able to distinguish between faces belonging to Dan's "team" versus Jim's "team," researchers found. The children were then shown computer-generated faces representing characteristics that were the opposite of those belonging to either Dan or Jim. After seeing opposite faces, typical kids suddenly found it much easier to place Dan-like or Jim-like faces on their rightful team. But the improvement in recognition was much smaller for children with autism.

The findings suggest that autistic children don't update their perceptions in the way typically developing children do. "Since faces are important for interpersonal communication, these adaptive difficulties could help explain some of the social problems that confront people with autism," Pellicano said.

The researchers include Elizabeth Pellicano of the University of Bristol and University of Western Australia; Linda Jeffery and Gillian Rhodes of the University of Western Australia; David Burr of the University of Western Australia and Università Degli Studi di Firenze.

This work was supported by the Australian Research Council and the Experimental Psychology Society, UK.

Reference: Pellicano et al.: "Abnormal Adaptive Face-Coding Mechanisms in Children with Autism Spectrum Disorder." Publishing in Current Biology 17, 1--5, September 4, 2007. DOI 10.1016/j.cub.2007.07.065

Note: This story has been adapted from a news release issued by Cell Press.

It takes a village to raise a child with autism, CP

Jeff Sell — Thu, 06 Sep 2007 15:35:46 EDT

It takes a village to raise a child with autism, CP

Harley was adopted at three days old. He was the first child. Even knowing Harley was about 6 weeks premature, no one anticipated his multitude of issues.

When Harley began to miss developmental milestones, he was diagnosed with hearing loss. At 18 months, just prior to a scheduled operation to correct the hearing problem, doctors found that his hearing had been restored. Further tests were done, which showed that Harley had cerebral palsy and autism, which involves expressive/receptive language delays.

Being autistic, Harley makes repetitive motions like flapping his arms. In addition, Harley experiences petit seizures.

But with his bright red hair and big, blue eyes, he is as cute as a button!

Harley attended the Family YMCA summer program with the assistance of a caregiver provided by Community Alternatives Program funds. He receives therapy through Coastal Riding and attends a United Way aquatic program. In addition, Harley is a client at UCP/Easter Seals.

During the school year, Harley attends the life skills class at Rachel Freeman, where he has occupational and physical therapy services. Kim Johnson, a music therapist, also works with Harley privately.

Harley's situation exemplifies the saying that it "takes a village to raise a child." As any mother would want their child to be accepted as a member of the community, so does Harley's.

Elizabeth DeBiasi offers this advice to families that face raising a special needs child: It is all in the attitude! Turn away from victimhood because it is about the child - not you. Be a positive role model and develop a support system comprised of family, friends and community resources. As parents, you are the child's mouthpiece.

So if you see Harley around town, give him a smile and say hello.

David Morrison is co-chairman of the Wilmington mayor's committee for people with disabilities. The committee welcomes the public to attend its meetings, which are the third Wednesday of every month in the Lord Spencer Room of City Hall from 10:30 a.m. to 12:30 p.m.

David is the Star-News' first community blogger. Check out many more posts at his 'Endless Options for all Disabilities' blog, at disabilities.starnewsonline.com.

48 Patient Group CEOs Call for Health and Long-Term Care Coverage for Every American

Jeff Sell — Thu, 06 Sep 2007 15:22:59 EDT

48 Patient Group CEOs Call for Health and Long-Term Care Coverage for Every American

Statement Calls on Candidates to Propose Specific Policy Solutions

(Nashua, N.H., Sept. 6) -- Today the nation's leading patient groups
released a statement signed by 48 CEOs that calls on the 2008 presidential
candidates to propose specific solutions that guarantee effective and
affordable health and long-term care coverage for all Americans.

This effort represents the first time that the nation's leading patient
groups - charitable organizations that represent people with a chronic
disease or disability - have joined forces in support of improving health
coverage for all Americans.

"We're facing a grave crisis that demands immediate action," said Easter
Seals Chief Executive Officer Jim Williams. "Many are at risk, but none
more so than the 100 million Americans we represent," said Williams, who
also serves as Chair of the National Health Council. "We hope to not only
educate candidates, but compel them to act on this vital issue.

Approximately 500,000 New Hampshire residents suffer from at least one of
the five most common chronic conditions. In addition, nearly 32.5 percent
of residents (approximately 400,000 people), report suffering from a
physical or emotional disability that limits activity or requires the use of
special equipment such as a cane, wheelchair or special bed.

For many of these residents, obtaining effective health and long-term care
coverage is difficult, if not impossible. In addition to those unable to
obtain coverage, many New Hampshire residents are underinsured or have
reached the lifetime cap, effectively ending the care they can receive.

The National Health Council, founded in 1920, is leading the effort to
educate presidential candidates and the media about the importance of
ensuring that all Americans have coverage. It is joined in this effort by
the Alzheimer's Association, Easter Seals and nearly 50 other patient groups
that comprise its membership.

"We can no longer sit on the sidelines and remain quiet when so many of the
people we represent are suffering," Williams said. "This problem has been
brewing for years. Candidates, the media and the public at large must
understand that we cannot wait any longer."

The National Health Council is a nonprofit umbrella organization of 119
national health-related organizations working to bring quality health care
to all people. Its core membership includes some 50 of the nation's leading
voluntary health agencies representing about 100 million people with chronic
diseases and/or disabilities. Other Council members include professional and
membership associations, nonprofits with an interest in health, and major
pharmaceutical and biotechnology companies. The Council serves as a place
for diverse health-related groups to build consensus with a focus on
patients and their needs

###

'Recovering' from autism

Jeff Sell — Thu, 06 Sep 2007 15:16:13 EDT

'Recovering' from autism

The moving documentary "Finding the Words," which tells the story of eight "perfect babies" diagnosed with autism spectrum disorder (ASD) as toddlers, centers on a controversial premise: autistic children can recover.

There is no cure, of course, and each family's fight is an often-frustrating and sorrowful emotional journey. But through home video, photographs, medical reports and interviews with family members and doctors, the film ultimately conveys a message of hope.

And it's one that the film's writer, producer and director, Elizabeth Horn, fervently believes needs to be heard. It was her own daughter Sophia's journey to "recovery" that inspired the work.

But what does "recovery" really mean? Periodically, I'll be posting your own thoughts on the issue, including your stories. They can be as long or short as you like. Here's the first, written by Oak Park's Christina Blakey.

To submit your own story, drop me a note at jdeardorff@tribune.com.

"I am a stay-at-home mother to three boys (Daniel, Charlie and Joe) and my husband is a Federal Prosecutor in Chicago. Our eldest son had life-threatening asthma at age 2 and our middle son has autism.

I run a state-wide support group called "Illinois Biomedical Kids" where parents draw support and guidance from one another as they successfully treat their children with autism.

In August of 2005, there were 20 of us. Now, two years later, we are almost 200 parents strong.

My husband and I are very thankful we decided to look into the science ourselves and not simply take the "experts" word for it. Through the medical treatments aimed at detoxifying their bodies of heavy metals and regulating their immune systems, my boys are doing extremely well today.

My eldest no longer has asthma and my son with autism is mainstreamed in a 2nd grade classroom. Fortunately, he received intensive therapy through Early Intervention from age 10 months and once we began treating his underlying medical problems, he has flourished in home Applied Behvior Analysis (ABA) programs. He is a well-liked member of his class with many friends. My youngest, under-vaccinated boy, has neither autism nor asthma.

I know the word "recovery" strikes a resonant chord in many individuals within the autism community. We aren't trying to change who our children are-we are simply not ignoring the very real medical problems they have.

For instance, all the mainstream doctors I approached (including the very talented allergy/immunology team at Children's Memorial Hospital) assured me that my son didn't have any problems with milk and could not explain why he threw up almost everything he ate and had severe gastric reflux as a 6-week-old infant. However, when I finally bit the bullet and took milk products out of his diet, he stopped throwing up.

I remember when he was 3 years old, he used to have to sleep next to a bed pan every night. By simply replacing milk and wheat products with healthier, easier to digest alternatives, he not only became healthier but his language and cognitive skills improved dramatically.

I know this because his diet was the only thing we changed within a six-month period of time and we had his language tested right when we started the diet and then six months into the diet. His expressive language scores jumped 10 months with absolutely no speech therapy and a very difficult family move during this period of time.

The same improvement was seen by all who worked with him when we began chelation (using chemicals to remove excess or toxic metals) as well as hyperbaric oxygen therapy. Transition tantrums ceased and his congitive skills soared.

Is Charlie cured now? I don't consider him to be, but I really believe it depends on who you ask. Many people would never guess he was ever as severe as he was and he has playdates with all neurotypical peers who don't see him as anything but another playmate.

Once we paid attention to his medical issues, educational and therapuetic issues fell into place and the difficult social skills and language taught through many hours of therapy were finally 'sticking." It no longer feels as if we are pushing a boulder up a steep hill.

I also know a lot of parents with "recovered" children who choose not to talk about it. Perhaps many of us resist using the word "recovered" because it implies that the journey is over.

For those of us who have entered the realm of biomedical treatments for our children, it has become impossible to go back and pretend that we don't know better when we make parenting choices based on convenience rather than health. To pay close attention to the diets of our affected children and ignore the processed food we feed our "neurotypical" children. To ignore our own health.

I'm truly thankful that my son is at the point when I can take a little bit of time for myself now and then, yet this is unfortunately not the case for so many parents whose job is to ensure the very safety of their child, 24 hours a day, 7 days a week. My son may not have lost his autism diagnosis yet.

However, when I consider the fact that just a few years ago, he could not hold down the food he ate, he stimmed alone for hours on end, he could not carry on a simple conversation, and he tantrumed to the point of kicking my then-pregnant belly repeatedly when transitioning from one activity to the next, I marvel at the endless possibilities within his little 8-year-old body and can't help but hope for his future. For all of our children's futures.

A painful choice to save a family

Jeff Sell — Wed, 05 Sep 2007 11:18:06 EDT

A painful choice to save a family

John Faherty
The Arizona Republic
Sept. 2, 2007 12:00 AM

http://www.azcentral.com/arizonarepublic/news/articles/0902ThatBoy-redo.html

When police officers finished binding her son Colin's hands and feet, they
turned to Teresa Abernethy and asked what she wanted them to do with him.

It felt like every moment of the past decade led to this question.

Colin, then 12 years old, had severe autism. His disability had grown to
shape the Abernethy family. Teresa knew that her answer to the officer's
question would define it forever.

She thought first of Colin.

She thought of her other children. They already had seen and experienced too
much.

She thought of her husband, Jim, who once told her that if they placed Colin
outside the home, he would never be able to see his son again. He would be
too ashamed.

Teresa knew the answer but was surprised to hear herself say it: Take my
son.

It was at that moment two years ago that the Abernethys began the process of
breaking their family apart in order to save it.

. . .

By the time Colin was a very young boy, Teresa Abernethy knew he was not
like other kids.

"I would take him to the park, and he would just run," she said. "He would
never look back. Most kids turn back to look for their mom and dad when they
get to a natural boundary. He never looked back, never."

Colin was diagnosed at 18 months.

Autism is a neurological disorder with a wide spectrum of behaviors. There
is no cure.

Colin didn't speak. He didn't connect with anybody. He seldom looked at his
parents.

The Abernethys treated his illness aggressively. They worked with doctors,
psychiatrists and therapists to get him the best care.

They worked with his teachers in special education in the Madison School
District.

Teresa quit her job as a nurse to take care of Colin and the other children.

But Colin continued to struggle at home.

Like many children with autism, Colin finds comfort in routine. In a large
family, that is in short supply.

"The lack of consistency was too much for Colin," Teresa Abernethy said.
"Family is hectic. School is going to call. Soccer practice gets changed. A
kid gets sick. There is always something. And it was all too much for
Colin."

The Abernethys were realizing that the thing they loved the most, their
family, was a big reason why Colin was becoming unmanageable.

As he grew older, Colin's outbursts were becoming more common and more
violent.

And they were usually directed at his mother.

"He was such an imposing figure," Teresa, 42, said.

When Colin was at school, there was respite for Teresa, but it was
temporary.

"The bus delivered him to the front door every day. He would come home, and
I would be petrified."

Some days he would run into the home, drop his book bag and start hitting
her.

"Living with Colin was like living with an abusive spouse," Teresa said.
"You never knew what was going to set him off."

Colin's doctor, Dr. Kevin Berger, told her it was common for someone like
Colin to lash out at the person he is most comfortable with.

Teresa wore long-sleeved shirts to hide her bruises and bite marks, but she
knew Colin's behavior was beginning to damage her entire family, something
she and her husband had vowed would never happen.

"You try to protect your kids from things, but the violence they have seen
is not something any child should ever see," Teresa said. "He was our
burden; he was not our kid's burden."

. . .

Connor Abernethy, then 9, shared a room with his brother Colin. Getting
Colin down for the night was never easy.

"We would close his door and just pray that it remained closed," Jim said.

One night, after a particularly difficult day, the boys were in their room
and, finally, asleep.

The parents were sitting and listening to the sudden silence of a house full
of sleeping children.

Then Connor emerged from his room and told his parents he had a headache.

"You've got to keep in mind that Connor is a kid who never complains about
anything, and all I could think to do was get him back into that room," Jim
said.

They rushed to the medicine cabinet, gave Connor aspirin, and all but pushed
their child back into his room.

When the door shut, Jim realized that he had lost control of his family.

"I stood there and I said, 'This has got to end.' "

Jim Abernethy, 41, comes from a family of six kids in Queens, N.Y., and he
places great value in keeping the family intact.

The Abernethys tiptoed around the issue of placing Colin sometimes and
argued about it other times.

Jim could no longer deny Colin's presence in the home was harming their
other children.

"His violence was extraordinary," Jim said. "He was uncontrollable at the
end, and it was all going on in the house in front of the kids. He was
assaulting my wife."

There were at least six calls to 911 from the Abernethy home in the two
years before Colin left.

More people, including Colin's doctor and psychiatrist, advised the
Abernethys to consider removing Colin from the home.

Jim remained reluctant to place his own son, who cannot communicate, into a
group home.

"My primary concern is that he would not be able to tell me if he was abused
in any way."

. . .

The night Teresa told police that Colin could no longer stay in their home,
he was handcuffed to a gurney and taken by ambulance to St. Luke's
Behavioral Health Center in Phoenix.

As he was admitted, Colin began to realize what was happening.

"It lasted about 35 minutes. Banging his head. Ripping off his clothes with
his mouth," Teresa said.

During his four weeks there, a spot was found for him in a group home about
5 miles west of the Abernethy home.

While Colin was in the hospital, his family moved his furniture and clothes.

When they walked into the house, Teresa said to her son, "Colin, this is
your new home."

He had no reaction.

The state's Division of Developmental Disabilities tries to keep families
together because it is usually best for the child. Placing a child at a
treatment facility is also costly for the state. Of the 16,680 children with
developmental disabilities the division is now serving, only 94 live in
group homes.

Teresa was told repeatedly by the division to try to keep Colin at home.

But she knew, and Colin's doctors knew, that he was becoming worse, not
better.

His stay at St. Luke's changed things.

The state reviewed his case and decided to place him in a home with just one
other teen.

The house is handsome and clean and staffed by at least two people 24 hours
a day.

There is art on the walls and notes on the refrigerator, but it still feels
more like the waiting room for a large dental office than a home.

Colin has made significant progress during his time there.

His psychiatrist has adjusted his medications, which has helped. Of equal
importance is that Colin now lives in a completely controlled environment.

He wakes up at the same time every day. He is taken to school, and then he
sits down for dinner each night at exactly 6:30. After dinner, he spends 20
minutes on a swing set.

He has not physically attacked anyone since his move.

As Colin's anxiety decreased, the Abernethys were able to start seeing him
more.

"We did not put him in the group home to not be part of the family," Teresa
said.

Nearly every day Colin goes to the Abernethy home to spend time with his
family.

Teresa is certain she spends more time with her 14-year-old son than anyone
else she knows.

"It's great being able to just be his mom," she said.

Although Colin has progressed, he remains highly uncomfortable around
people. He still spends hours every day shuffling a deck of animal flash
cards in a manner that seems to calm him. He remains non-communicative.

Colin works with counselors on self-calming methods. He is learning basic
living skills such as how to clean and the value of money.

But he will never be well.

On his wall is a dry-erase board where Teresa writes her son notes:

Colin,

Your mom will be here to visit you tomorrow at the house around 8:45 a.m.!

Then you will go to OT around 2:30 p.m.

Colin will go to Mommy's house Wednesday.

. . .

One day last school year, Erin, then a seventh-grader at Madison Meadows
Middle School, sat down and wrote a poem about her brother.

She called it "That Boy," and it described what she and her family were
going through.

Teresa read the poem after learning it won a districtwide contest. "You
think you're protecting your children from some things," she said, "but of
course they know everything, see everything."

When Colin is home with his brother and sisters, he is a brooding presence
and remains the point around which everything revolves.

His siblings love him and ignore him like only family can.

They sit on the couch and talk to him and about him while he shuffles his
cards.

Maggie, 3, is just now realizing that Colin answers all of her questions
with a quick grunt that sounds like a yes.

It's a defense mechanism he uses for all questions, an attempt to end a
conversation as quickly as possible. It is beginning to infuriate her.

Erin, 13, clearly adores her brother and knows he would never hurt them, but
she also knows Colin hurt their mother.

Connor, 11, cuts his hair very short just like Colin's.

"Most of the memories I have of Colin are sad ones because it was hard,"
Connor said. "He would have tantrums, and he makes a lot of noises."

He pointed out that it was also nice to share a room with his big brother.

"I used to be afraid of the dark. I'm not anymore. But it was nice to have
someone in the room with me."

Colin has always been close to his maternal grandfather, Jim Gross of Sierra
Vista.

Recently, Gross came up for a visit and found Colin sitting on the family
couch, shuffling his cards.

Gross, 68, leaned over and kissed his grandson. Then the two of them held
their foreheads together.

Colin did not smile, but for a moment it looked like he recognized the world
around him.

Then in his rapid monotone he said, "Jeopardy, Jeopardy, Jeopardy," his
favorite show.

At once his brother and sister told him the show will begin at 4:30, and he
was quiet again.

Despite the progress Colin has made, moving him home is not an option.

The Abernethys have to think of all of their children and are certain Colin
would revert to his more troubled ways.

"Would I be keeping my child at home for him or for me?" Teresa said.

The Abernethy house is a place where everything works but nothing is
perfect. There is very little art. The furniture does not match. The walls
could use a fresh coat of paint.

It is also the home of three children still trying to navigate their family
minus Colin.

Their brother continues to define who they are, but now it is his absence
that forms them.

"At first it felt kind of empty," Erin said, "like he was not here. Weird."

"But now it feels right. Perfect. Sad but perfect."

Environmental Exposures and Gene Regulation in Disease Etiology

Jeff Sell — Wed, 05 Sep 2007 11:12:57 EDT

Environmental Exposures and Gene Regulation in Disease Etiology

Thea M. Edwards and John Peterson Myers
Environ Health Perspect 115:1264-1270 (2007) .

Abstract

Objective: Health or disease is shaped for all individuals by interactions
between their genes and environment. Exactly how the environment changes
gene expression and how this can lead to disease are being explored in a
fruitful new approach to environmental health research, representative
studies of which are reviewed here.

Data sources: We searched Web of Science and references of relevant
publications to understand the diversity of gene regulatory mechanisms
affected by environmental exposures with disease implications.

Data synthesis: Pharmaceuticals, pesticides, air pollutants, industrial
chemicals, heavy metals, hormones, nutrition, and behavior can change gene
expression through a broad array of gene regulatory mechanisms. Mechanisms
include regulation of gene translocation, histone modifications, DNA
methylation, DNA repair, transcription, RNA stability, alternative RNA
splicing, protein degradation, gene copy number, and transposon
activation. Furthermore, chemically induced changes in gene regulation are
associated with serious and complex human diseases, including cancer,
diabetes and obesity, infertility, respiratory diseases, allergies, and
neurodegenerative disorders such as Parkinson and Alzheimer diseases. One
of the best-studied areas of gene regulation is epigenetics, especially
DNA methylation. Our examples of environmentally induced changes in DNA
methylation are presented in the context of early development, when
methylation patterns are initially laid down. This approach highlights the
potential role for altered DNA methylation in fetal origins of adult
disease and inheritance of acquired genetic change.

Conclusions: The reviewed studies indicate that genetic predisposition for
disease is best predicted in the context of environmental exposures.
Second, the genetic mechanisms investigated in these studies offer new
avenues for risk assessment research. Finally, we are likely to witness
dramatic improvements in human health, and reductions in medical costs, if
environmental pollution is decreased.

- - - -

Address correspondence to T. Edwards, 521A Bartram Hall, PO Box
118525, Department of Zoology, University of Florida, Gainesville, FL
32611 USA. Telephone: (352) 392-1098. Fax: (352) 392-3704. E-mail:
tedwards@zoo.ufl.edu

We thank W. Hessler for her editorial suggestions.

The John Merck Fund provided funding for this review.

The authors declare they have no competing financial interests.

Received 2 December 2006 ; accepted 21 May 2007.

authors:

Thea M. Edwards1,2 and John Peterson Myers2

1Department of Zoology, University of Florida, Gainesville, Florida, USA;
2Environmental Health Sciences, Charlottesville, Virginia, USA

Panel explores autism in MO

Jeff Sell — Wed, 05 Sep 2007 10:58:34 EDT

ST. LOUIS (AP) -- A state panel heard testimony Friday in St. Louis on
autism and ways to improve services in Missouri.

Speakers talked about the hope to better cross-reference research data. They
talked about ways to provide earlier diagnosis and better services for those
with autism.

They stressed issues like education and training that can help certain
autistic people be more self-sufficient or hold jobs.

Autism disorders are marked by a wide range of behaviors. Some autistic
people insist on sameness or have difficulty communicating or socializing.

The panel's findings could help legislators craft new laws related to
autism.

(Copyright 2007 by The Associated Press. All Rights Reserved.)

The Boys of Summer

Jeff Sell — Tue, 04 Sep 2007 18:01:49 EDT

The Boys of SummerBy Jeff Sell

Ben and Joe Sell were born on Tuesday morning, May 17th 1994. It was one of the happiest days of my life. I had always dreamed of having a son, but on that day my wife, Paula, and I were blessed with not just one, but 2 precious, sons. Our family had nearly doubled in size. We already had a 16-month-old daughter, Natalie, and Paula and I welcomed our second daughter, Gracie, on September 17, 1997. Our home was, and still is, a busy, eventful place to be, to say the least.

The day the boys were born, I stopped by a sporting goods store and bought two small baseball gloves for my new little shortstop and second baseman. Perhaps my behavior was a bit premature, but I had already planned out their future. They would play for the Yankees and turn a double play in under 2.4 seconds.

Little did we know how significantly our lives would change just 2 ½ years later when the boys were diagnosed with autism.

Diagnosis

At the time of the boys’ birth, Paula was teaching elementary school and had received her certification in special education. Shortly before their birth, though, she retired to be a stay-at-home mom.

The first year was a blur of diapers, bottles, giggles, and more diapers. Then when Ben was around 9 months old, Paula noticed him acting differently and that he had stopped responding to her voice. Over the next year, we came to realize the severity of Ben’s problems and he was diagnosed with autism.

Ben is a “profoundly” autistic young boy we are told and possesses some of the classic characteristics that accompany autism: to date, he has never spoken a word; we have experienced gut-wrenching moments of him displaying self-injurious behaviors; and at age 13, we are still trying to toilet train him. However, I have no doubt that he is smarter than me!

Throughout this entire timeframe, Joe continued to develop at a normal pace and was meeting all of the expected milestones. Then around the age of 24 months he, too, began slipping away, right before our very eyes.

Today, Joe is able to speak but has significant language deficits and is considered to be on the “higher end” of the autism spectrum.

Coping

Paula and I handled the autism diagnoses differently. I could not understand what had happened to my twin boys. Why was this happening to my family? How could I “fix” my sons? Typical Dad thoughts I suppose. Would they ever play baseball or be able to engage in some of the “normal” activities young boys enjoy?

While I was searching for answers to these endless questions, Paula was much more accepting of the diagnosis. She pushed ahead and dealt with the news head-on. I, on the other hand, continued to feel sorry for myself and for what I perceived to be the loss of so many dreams that I had concocted for my sons.

I soon learned, however, to focus on the positive, rather than the negative. Sure there are plenty of stressful times involved with raising four children, two of whom have autism, but the glass is always half-full, not half-empty.

A Mother’s Care

Paula’s job is certainly the toughest job by far. She is a teacher, cook, scheduler, chauffer, nurse, doctor and an advocate and exceeds in each role. She is also actively involved in the boys’ individualized school programs, working closely with their teachers. There is never a dull moment in her day and, when the day is reaching an end, she eventually makes it to the sofa for a much-deserved rest.

As a couple, we individually try to do the things we have a talent for doing when caring for the boys. Their needs vary, however, because they are on opposite ends of the spectrum. Because their needs are so different, Paula and I share a unique insight into the issues that often divide our autism community (i.e. the most effective interventions).

Joe is higher functioning than Ben so we notice that what may work for one, may not work for the other, be it a biomedical treatment or behavioral intervention. Their school programs are very different as well. So with confidence, we can say that we have seen firsthand the array of issues that families of children with autistic spectrum disorders face.

A Father’s Voice

I am on a never-ending quest to find solutions to some of the global problems facing our autism community and will speak out on nearly every important issue. It’s what I do for a living--talk. I am after all, nothing but a trial lawyer.

The boys were the reason I became involved with the ASA where I served on the board for nearly 5 years, was elected as the 1st Vice President for the Society and was also the Government Relations Committee Chairman. Now, I am a “staffer” for ASA and am one of the lucky ones that can say--“I love my job”. Also, in 2001 I co-founded the Vaccine Injury Alliance whose lawyers are trying the Autism Omnibus case in the US Court of Claims as I type.

My wife and I are indeed blessed. Our oldest daughter Natalie is a healthy 14 year-old, Ben and Joe are now 13 and Gracie is a 9-year-old fireball. Raising 4 children is challenging, but we cannot think of a greater joy than the love we see flowing though the roots of our family. Also, we have been gifted with friendships from so many talented and dedicated giants in the autism world.

The boys continue to add to the dynamics of our family and make it “extra-special” with their unique personalities and needs. They impact our individual character and remind us to appreciate family and friends most of all, rather than money or material possessions.

They may not be headed for the Big Leagues as I had once planned while playing college level ball at Kent State University, but the joy I experience from coaching Ben and Joe’s “Special” Little League team far exceeds anything that I could have ever imagined.

I am one lucky Dad…