WEDNESDAY, April 13 (HealthDay News) -- After their 4-year-old
daughter was diagnosed with autism last December, Kristen Paurus
and her husband, Bill, sought out doctors and therapists who could
In their hometown of Sebeka, Minn., population 710, that's not
The closest speech therapist is 40 minutes away, a drive their
daughter, Brea, makes with her dad twice a week. It's a three-hour
trip to Children's Hospitals and Clinics of Minnesota in
Minneapolis, where Brea sees a neurologist, gastroenterologist,
urologist and a behavioral pediatrician.
Kristen wants her daughter to see a behavior therapist, but the
nearest one is two hours away. A representative from a statewide
autism organization said it might be able to send a behavior
therapist to her rural area, but two months later, she still
doesn't have an appointment.
"It's so hard not being able to provide something for your daughter that could possibly help her so much," Kristen said.
The Pauruses are far from alone. About in 1 in 110 U.S. children
-- and 1 in 70 boys -- has autism, and its prevalence is
Yet, nearly three-fourths of about 850 parents of children with
an autism spectrum disorder surveyed by Autism Speaks said they're
unable to access needed medical, educational or recreational
Based on the results of the online survey, Autism Speaks listed
the best places for families with an autistic child to live.
Parents in 10 major metropolitan areas -- New York, Los Angeles,
Chicago, Cleveland, Philadelphia, Boston, northern New Jersey,
Minneapolis/St. Paul, Seattle and Milwaukee -- tended to report
better access to services.
"Many parents are telling us they have to drive too far, there are not enough services and it's too difficult to get the services even when they exist close by," said Mark Roithmayr, president of Autism Speaks, a New York City-based advocacy organization that funds autism research.
But among those who reported having difficulty, 67 percent said
they regularly drive an hour or more for services.
Five of the 10 "best places" to live are in states that have
enacted autism insurance reform that requires insurers to cover
screening, diagnosis and treatment for people with autism. Overall,
about half of states have enacted reforms, while others have
legislation pending, according to Autism Speaks.
Besides reporting a lack of services, a majority of respondents
(83 percent) said they had difficulty finding "appropriate"
recreational activities, such as programs for kids with special
Another challenge for families with an autistic child is
balancing work with caregiving. Only about 55 percent said their
employers had flexible policies that enable them to work and take
care of their child.
"If you have a child or a teen with autism, often their needs consume almost every moment of your waking hours," Roithmayr said. "We have had so many instances in which the mom or dad has had to quit a job to stay at home to make sure the coordination of services is happening and that the child's needs were being met."
That's the decision the Pauruses made. Bill stopped working to
care for Brea and their 2-year-old daughter, while Kristen kept her
job, in large part because it offers good health insurance, which
they need to pay for Brea's treatment, she said.
"This is affecting corporate America in huge ways, but corporate America has not addressed this yet," Roithmayr said. "A really good or family-friendly employer would understand that when you have a child with autism, at any moment of any day, you may have to be out of the office attending to his or her needs."
Despite the stress that can come from constant caregiving, few
families said they could get respite care, which offers parents a
break to run errands or go out to dinner without their child. Many
parents of children with autism can't leave their child with the
"Respite services are not a luxury, they are a necessary service that allow families to successfully keep a child with autism in the home environment versus institutional care, and increases the overall wellness of all family members," said Patricia Wright, national director of autism services for Easter Seals, in a news release. "Every parent needs a break."
Friends and family can help by getting to know the child and
offering to babysit, but more formal programs are needed, Roithmayr
Family is the major factor keeping the Paurus family in tiny
Sebeka, despite the lack of services. Kristen and Bill grew up
there, and both sets of parents, siblings, and plenty of aunts,
uncles and cousins live nearby. They pitch in with babysitting, and
Brea knows they love and accept her.
But if the behavioral therapist doesn't come through soon, the
Pauruses might move to Minneapolis/St. Paul, and perhaps commute
home on weekends.
"They say it's good for her to have people that love her and understand her around her," Kristen said. "So what do you do? Do you go somewhere you know nobody and don't have that support? Or do you stay where you are and don't get the professional services you feel you need?"
U.S. National Institute of Neurological Disorders and
Stroke has more on autism.