Apr 25, 2008
Autism in Easton
Families find getting help is a constant struggle
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by Laura Modlin
Correspondent
Thomas Dunsby is only 12 weeks old but is already spending a lot of time at Yale. There he is taking part in a program studying siblings of children with autism.
The information Thomas offers through his participation may someday help his older brother, Jack, 6, who was diagnosed with the developmental disorder when he was 2. The boys’ mother, Cathy, at first didn’t notice anything different about Jack.
“I thought he was fine,” she said. Ms. Dunsby already had a daughter and thought that maybe boys just develop differently than girls.
When parents find out their son or daughter has autism, however, the dreams they had for that child’s future shatter. Services to help children are costly, and Connecticut remains one of only three states in the country — the other two being Mississippi and Alabama — without a regular program of services for adults with autism, according to Amy Fulton, whose son, Nick, 9, was diagnosed with the disorder.
Autism is a developmental disorder considered neuro-biological in origin. It is characterized by problems with social interaction and communication and by repetitive behavior.
The cause of autism is not fully understood but is commonly considered to have a genetic base and an environmental trigger. Many people believe that the mercury in immunizations triggers autism in children. Other theories point to pesticides and hormones in food.
There are far more questions than there are answers.
Autism in Easton
On April 2, a group of impassioned parents spoke before the Easton Board of Finance with a plea to defend the rights of families in Easton with autistic children. The date coincidentally was World Autism Awareness Day. That night, the board was making final changes to the Easton Board of Education’s proposed budget, which called for a hefty increase in spending for “outside professional services” that would especially benefit children with the disorder.
Saddled with a big budget and a nose-diving economy, finance board members moved to reduce the school budget by $150,000, eliminating many of the requested increases for special education services.
Dr. Donna Dekle is the director of special services for Easton public schools.
“We’re here to provide the best we can for these children,” she said. “I ask myself, If this were my child, what would I need?”
According to Dr. Dekle, it is estimated that one out of every 150 people in the United States today has autism.
There are currently 11 children with autism in grades K-8 in the Easton public schools. Given the schools’ combined enrollment of 1,183, that’s a higher percentage than the national average.
Dr. Dekle sets goals for each child in the schools with autism. Her aim is to help them develop skills that will allow them to function as much as possible in the real world. She strives to help prepare them to be safe and productive.
“Many children with autism do things that other children do developmentally,” she said. “What differentiates a child with autism is an exaggeration of the levels of intensity, frequency, duration, and consistency.”
The state mandates that public schools in Connecticut have an “appropriate program” for children with autism but does not specify the program or how to pay for it.
Samuel Staples Elementary School has a part-time autism teacher three days a week for the more severely affected children. The school psychologist helps and the school also employs outside services.
Dr. Dekle said a motto at the school is that all children should have access to regular classrooms and all children can learn.
In many forms
Each child with autism is unique and so are their needs and the school’s approach to teaching them, Dr. Dekle said.
Some children with autism develop more slowly than typical children. Others develop typically and then one day they regress.
Mary Burke’s daughter, Maddie, was developing typically until the age of 13 months, when she suddenly lost her speech and started flapping her arms.
“I had her at the doctor the next day,” said Ms. Burke.
Doctors determined that Maddie not only has autism but also has apraxia, a neurological disorder affecting motor planning. Apraxia has become more and more common in children with autism over the years.
When Allegra Herman took her son, Bradley, 5, to “expert” doctors for diagnosis of his developmental delays when he was 21 months old, she was mistakenly told “by everyone” that he would be OK in a few years.
Ms. Herman and her husband made a major push to help their son for what they thought would take about three years. They had everything done privately for their son, spending $60,000 a year for his treatment.
“We went to the best of the best,” she said. “I know we couldn’t have done more.”
Bradley did not get better after two years, and his parents realized they could not keep up that pace forever.
Stacy Varvaro’s son, Matthew, 8, was diagnosed with autism at age 3.
“There’s no college fund anymore, no saving for the future, no addition to the house, a lot of borrowing from family members and taking out loans” when a parent has to pay for services for a child with autism, Ms. Varvaro said.
As hard as it can be to learn your child has autism, and to find the resources to afford help, knowing what steps to take to get help can be even more challenging.
“Most people get no services and no direction,” said Ms. Varvaro.
Advocacy groups
There are advocacy groups now though. One of the largest is Autism Speaks, which offers a kit to guide parents during the first 100 days after their child is diagnosed.
Getting insurance companies to cover autism services can be a full-time job, according to Ms. Fulton.
“Insurance companies are a nightmare,” she said. “You have to send claims certified to prove they got them. Otherwise, they’ll say they didn’t. It takes six to eight weeks for them to process the claims, and then you have to pay for an updated report from a therapist.”
She added that most doctors who treat people with autism don’t take insurance because of how hard it is to navigate the bureaucracy.
Ms. Fulton and Ms. Varvaro said they pay $35,000 to $40,000 a year for therapy even with what insurance companies will pay and what the schools provide.
They feel the services they pay for are necessary in order to help their children develop into the most independent adults possible.
Still, no adult program exists in Connecticut. The state has initiated only a “pilot program” for adults with autism, but only for 50 people statewide, Ms. Fulton said.
Many parents of children with autism are left to wonder about the burden their children might place on society as they age. In spite of the challenges, Ms. Herman has been one who has found much to be grateful for in her relationship with her son Bradley.
“I was asking all the experts, ‘What should I do, what should I do?’ and one day someone said, ‘You should be his mother and you should enjoy him.’ And that’s what I do,” she said. “Cancer would be devastating, not an autism diagnosis. I try and see things through his eyes. Sometimes I’ll do the things he does to see what it feels like to be him. It feels kind of nice.”
Autism Speaks may be found at autismspeaks.org.
April is Autism Awareness Month.
© Copyright 2008 by Hersam Acorn Newspapers
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