When the doctors told Elaine Hackett that her youngest son has autism, it was like someone banging a lid down on top of her.
For Heather Andrews, it was like a herd of horses dragging her 10 miles.
For Carol-Anne Hossler, it was like someone she loved had died.
Until recently, it was estimated that about four or five in 10,000 children had autism. Earlier this year, the Centers for Disease Control published a new estimate – one in every 150.
It’s not clear whether the jump in the number of children diagnosed with autism is due to a rise
in actual cases or a greater awareness of what’s always been there.
| Local families share their stories of autism: |
What is clear is that more and more parents are experiencing the shock and confusion of finding out their child has autism.
Everything Changes
“There’s no such thing as having a normal family life when you have an autistic child,” says Susan Rautio-Dietz, a Bloomington psychologist who diagnoses and treats autism.
Carol-Anne Hossler, a professor at Indiana University’s School of Education, knows how true this is.
For nine years, Hossler and her husband had a normal life. They had two children, twin boys who had no disabilities.
When their third child, Jonathan, arrived, everything changed. Not only does Jonathan have a severe form of autism, he also has an intellectual impairment – he has an IQ of just 26.
The family used to vacation in Canada, where they stayed in cabins owned by relatives. They stopped going because it wasn’t safe for Jonathan, and it wasn’t a vacation for anyone.
For 10 years, Jonathan didn’t sleep through the night. Hossler and her husband would take turns staying up to keep an eye on him.
“We had no life,” says Hossler. “We had this traditional idea of what our family was going to be like. We were going to be high school central, where all the kids’ friends came in and went out. But Jonathan couldn’t tolerate it, and if he was going crazy then we were all going crazy.”
Hossler resisted the idea of putting Jonathan in a group home.
“We wanted to do what was right for Jonathan, but I’m looking at my baby, thinking, ‘I’m not shipping him out,’” says Hossler.
As reluctant as she was, Hossler allowed her husband to put Jonathan on the group home waiting list.
Six years later, when Jonathan was 10, a spot opened up in a group home just half a mile from the Hosslers’ Bryan Park home. They decided to give it a try.
“I think he is happier,” says Hossler. “Life is really tough for him because he doesn’t understand so much, but his world is a little larger because he has more than just one place to be.”
What is autism?
Autism is a neurological disorder that affects how people perceive the world and how they communicate, socialize, learn, and behave. It’s not an emotional disorder or a mental handicap.
The signs of autism usually show up before the age of 3 and usually include a delay in speech development. Children may not socialize like others their age, may seem withdrawn, and may appear obsessed with a particular toy or with lining up toys. Some also engage in self-stimulatory behavior, like waving their arms or flapping their fingers.
Although it’s not part of the criteria for a diagnosis, many children with autism also have extremely sharp senses – so sharp that loud noises like bells cause them pain, fluorescent lights appear to flicker like strobe lights, or gentle hugs are intolerable.
The effects of autism can vary greatly from person to person. Those with a mild form of autism may go undiagnosed until adulthood, or are never diagnosed at all.
There’s no known cure, and little agreement about what causes autism, though experts agree it’s definitely not the result of “bad parenting,” a theory that was popular in the 1960s. Today, researchers are investigating genetics, vaccines, allergies, viruses, and environmental factors.
What is certain is that each person with autism is an individual who will face a unique set of challenges with a unique set of abilities.
This can complicate a parent’s search for the best care for a child.
So where does a parent start?
Treatments and therapies
Rautio says it’s becoming more common for parents to have some idea of what autism is when they bring their children to her for an assessment.
Most, however, are mystified by the diagnosis.
“There’s always a little depression,” says Rautio. “[Parents think], ‘Oh my gosh, this is something horrible.’”
Rautio finds herself having to dispel myths about the kind of life parents can expect for their children.
People with autism do get married, says Rautio. They can have children, they can hold jobs, and they can lead happy lives.
Over the last two decades, scores of treatments and programs have been developed to help those with autism improve their quality of life. “The Autism Sourcebook,” a guide published in 2005, lists almost 70 different treatments that may benefit children with autism, including speech therapy, social skills training, physical therapy, medications, and special diets.
Bloomington also boasts a wide range of physical activity programs adapted for children with autism. The Monroe County YMCA offers several activities, including swimming, soccer, and general sports skills, and Indiana University offers an adapted physical education program. The City of Bloomington co-sponsors “Buddy Ball,” an adapted baseball program. For parents on a bigger budget, PALS offers “equine-assisted activities” – therapy on horseback.
Bloomington parents can get help sorting through all the options from the Indiana Resource Center for Autism at Indiana University. The IRCA’s extensive collection of books and videos on developmental disorders is open to all Indiana residents. The center also maintains a collection of pamphlets with local information and contacts.
The IRCA doesn’t offer therapies or treatment but can consult with parents on choosing the appropriate services for their children and finding agencies and individuals who can provide those services.
Most autism services are not free, however, and the costs can add up. Government benefits are available but can be difficult to access.
Eligibility for Medicaid benefits depends on the family’s income. The Medicaid Waiver Program, however, is open to all who require a certain level of care. It allows individuals with autism to receive services at home rather than at a live-in institution.
As of September, there were 345 people on Indiana’s autism waiver roster. There were 3,542 people on the waiting list.
Suzie Rimstidt, a local autism advocate who has worked with the IRCA and, more recently, as the Monroe County coordinator for the non-profit Southern Indiana Center for Independent Living, estimates the current wait time for a waiver to be about 10 years.
Educating a child with autism
One service that is absolutely free, however, is education.
The federal Individuals with Disabilities Education Act requires public schools to provide appropriate education to children with disabilities, including autism, up to age 21. Last year, there were more than 8,000 students with autism in Indiana public schools, according to the Indiana Department of Education.
It’s up to parents and the schools to come to an agreement on what constitutes appropriate education for a particular child.
At least once a year, parents meet with teachers and administrators to design the child’s education plan for the coming year. If the school and the parents can’t agree, the parent can appeal for mediation, and then for a due process hearing, which is a legal proceeding.
Hossler says that managing her son Jonathan’s public school education was a daunting task, even though she is a former public school teacher and administrator.
“It’s very intimidating to go into a meeting and sit down with a bunch of people who are accustomed to just running right through it,” says Hossler.
Parents need to know the system and understand the law so they can advocate for their children, says Hostler. If they feel uncomfortable meeting with the school alone, she says, they can bring someone with them who’s done it before.
"The best resource we had"
With so many choices and so much at stake, parents can feel overwhelmed. They often face tremendous pressure from a society that doesn’t understand what it takes to raise a child with autism.
“Some of the parents tell me, ‘Our families don’t see it. They don’t see the autism. They just think he’s a bratty child. They think we spoil him. They criticize our parenting,’” says Rautio.
“They’re getting it from all over the family. I’ve even had teachers and other psychologists say, ‘I don’t see this kid as autistic.’”
Parents have to stay focused, says Rautio, because they are their child’s best source of support.
“I teach them at the time of diagnosis, ‘You are the number one advocate for your child,’” says Rautio. “They have been told they’re overprotective, but they have to be, because their child’s different.”
She suggests that parents join a support group.
“It’s the most isolating thing when you’re the parent of an autistic child,” says Rautio. “You can’t dialog with somebody who has no idea what you’re talking about.”
Elaine Hackett, who has two sons on the autism spectrum, says the support of other parents “was the best resource we had.”
When her youngest son, Jason, was diagnosed with autism in the late 1990s, the doctors told her practically nothing. She felt like she’d been “dropped into a foreign country where you don’t speak the language.”
The only advice the doctors gave her was to find a parent support group. It turned out to be good advice. It was a parent in the Bloomington support group who helped Hackett overcome her disorientation.
“She encouraged us to just go ahead and not feel bad about not knowing anything, but just get in there and start moving toward getting him some help,” says Hackett.
“Parents are, I think, the greatest resource – people who have been there and done that,” says Heather Andrews, who socializes with other parents once a week while their children play at IU’s adapted PE class.
Andrews says she’s come to accept a certain amount of chaos in her life. Her 10-year-old son, Eddie, is highly intelligent but has a severe form of autism and a penchant for escaping the house at night. Andrews asked that their names be changed to protect him.
Eddie’s learning to help with housework, Andrews says. He loves it, but he’s not always helpful.
“He wants to do the dishes,” says Andrews, “and before you know it you’ve got broken dishes all over the floor and the kitchen is flooded.”
Andrews was devastated when she first learned that Eddie had autism, but today she can laugh about the little things – like broken dishes.
“A good sense of humor gets you through anything in life,” she says.
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