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.
"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.
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.
"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."
Copyright © 2007 ABC News Internet Ventures
A life dedicated to being an autism advocate
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."
Copyright 2007 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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.
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.
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?
Our view: Challenge of autismFlorida 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.
(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.
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.
Sign up for tax break:
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.
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.
• 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
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."
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 skillsAt 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 districtsMost 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
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
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.
September 14, 2007
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.
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.
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
