With few resources for autistic children, many take matters into their own hands
When her son was 14 months old, Sandy Smith knew something was wrong.
"He was kind of in his own world," the Fargo mother said.
But Smith soon found out she was on her own, too, in trying to care for her newly diagnosed autistic son.
"There is no place to send them," she said about behavioral early intervention programs, ones that would care for children such as her son.
In the past decade or so, autism has emerged as the fastest-growing serious developmental disability in the United States, according to the national advocacy group Autism Speaks. North Dakota's stats mirror that trend, with the number of children diagnosed with autism nearly tripling in the state in the past six years.
And, to the east, Minnesota, which has 13,000 autistic kids, is bracing for the number of autistic high school students to double in the next six years.
But while the public's knowledge of autism has increased, local families and experts say there's much to be done.
"I think we're all grappling with the size of the problem and limited resources," said Lynn Dodge of North Dakota's Department of Public Instruction, who agrees with autism experts who think the rise of autism diagnoses is due to better knowledge. "It's everybody's learning curve."
As families face limited resources and access to services, both North Dakota and Minnesota are trying to help.
A dozen North Dakota officials, experts and parents are putting together a governor-appointed autism task force this summer.
The aim is to develop by July 2010 a state autism plan that would help direct the state on how to better help autistic people and their families with state services.
Across the border, the Minnesota Legislature recently passed a law establishing an ongoing autism task force, too. The goal: to help schools deal with the "escalating epidemic" of high school students with autism.
Minneapolis psychologist Eric Larsson, the advocacy chairman of Minnesota's chapter of Autism Speaks, said the number of high school autistic students will double in the next six years.
"Minnesota has gradually been improving the supports for children with autism," said Larsson, who works with applied behavioral analysis therapy as the director of The Lovaas Institute for Early Intervention. "Minnesota is definitely in the forefront." But is it enough?
Cost to families
Parents like Amy Dawson say no.
The Minneapolis attorney lobbies and advocates for families who have autistic children - often to help them get medical insurance to cover autism-related expenses.
"Most families have to appeal vigorously or hire an attorney in order to get coverage," said Dawson, whose 5-year-old son is autistic.
Because most insurance companies don't cover ABA therapy, which provides intensive early intervention, some families settle for cheaper, less effective treatments, she said. And due to the costs of hiring an attorney, many opt to enroll in Medicaid, "so the whole state ends up paying for it."
In the end, often families still have to pay thousands - if not tens of thousands - of dollars in expenses.
"Families are under a lot of stress financially and otherwise," she said, adding the divorce rate for families with autistic children is 80 percent. "Those costs are hardly ever quantified."
This year, the Minnesota Legislature considered legislation that would've required insurance companies to cover evidence-based, medically necessary autism therapies. The bill failed to pass.
"The state needs a law that requires necessary medical care," Dawson said. "There's absolutely no reason kids with autism shouldn't get insurance coverage for medically necessary care. Not only would they help families ... it would save the state millions of dollars."
On her own
Dawson acknowledges that Minnesota "is better than other states" when it comes to advocating for autism - an assertion Smith, the Fargo mom, backs up.
"In Minnesota, it's quite a bit better (than North Dakota)," she said about insurance.
Her employer, Microsoft, is the only company in the state that provides autism coverage, she claims.But while she had the coverage, "I quickly found out there was no one that was certified," she said.
So she stepped up to help.
Last year, Smith opened the North Dakota Autism Center in south Fargo.
"It was just one of those 'aha' moments," she said. "This is it - this is the only autism-based center in North Dakota."
Balancing her full-time job, the mother of three manages the center that helps her now 7-year-old son and nine other kids.
"I think it's so important to be a part of the solution," she said.
She's so passionate about the need for resources for autistic children that the second job is worth the investment, she said.
"I have the hope Tyler will have a job when he gets older," she said about her son, who excels in school but not in social or functional skills. "I don't think he'd have that (chance) without this."
What is autism?
A neurobiological disorder that affects 1 in 150 people, usually diagnosed by the age of 3
As a spectrum disorder, symptoms range from mild to severe. Essentially, the disorder impairs a person's ability to communicate and relate to others, often associated with rigid routines and repetitive behaviors.
Experts agree that early intervention is key, contending there is no effective means to prevent, treat or cure autism.
Source: Autism Speaks