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Published May 19, 2012, 11:30 PM

Parents of autistic children left wondering where to turn

North Dakota Legislature to consider recommendations on how to help families
JAMESTOWN, N.D. - His caregiver knew something was wrong when Alexander Cherney only wanted to sit and watch “Wheel of Fortune” or “The Price Is Right.”

By: Teri Finneman, INFORUM

JAMESTOWN, N.D. - His caregiver knew something was wrong when Alexander Cherney only wanted to sit and watch “Wheel of Fortune” or “The Price Is Right.”

The 2½-year-old didn’t want to play with other kids and only spoke a handful of words.

His parents thought it was simply his older siblings doing the talking for him. So when the family learned Alexander had an autism spectrum disorder, they were shocked.

“It was pretty hard. You just want your child to be normal, and you want to know that he’s going to grow up and be, you know, be able to do things in life,” his mother, Toby Cherney, said with emotion in her voice, “and knowing that he probably wasn’t going to be able to do some things was very hard.”

It was also hard figuring out what to do after receiving the diagnosis for their now 4-year-old son, Philip Cherney said.

“It was pretty shocking. You didn’t know what to say,” he said. “And then pretty much after that, it was like you had to figure out what the next step was.”

Other parents across North Dakota also have voiced frustration about trying to get help for their kids with an autism spectrum disorder and not knowing where to turn.

State lawmakers preparing for the 2013 Legislature have asked for suggestions on what the state can do to help and directed the Autism Spectrum Disorder Task Force to prepare a list of recommendations.

The task force met this past week and discussed the following ideas:

  • Hiring a state autism coordinator who could serve as a one-stop shop to help families and professionals.

  • Providing online early identification training for physicians.

  • Funding diagnostic clinics across the state for children from birth through pre-school.

  • Increasing the number of behavioral analysts who work with individuals with autism spectrum disorder.

The task force is still working on its final list of recommendations and their costs, which will be presented to legislators at the end of the month, said JoAnne Hoesel, chairwoman of the task force.

Families speak out

With one in 88 children in the nation now believed to have an autism spectrum disorder, awareness and advocacy of the disorder have continued to grow.

In the meantime, states such as North Dakota are figuring out what their role is and how to respond.

It’s unknown how many people in North Dakota have an autism spectrum disorder, Hoesel said.

The state is aware of about 750 children in grades K-12 with autism as a primary or secondary disability, said Lynn Dodge, special education coordinator for the Department of Public Instruction. This is a conservative estimate of the total number of children with autism.

The main signs of autism include problems with communication and social interaction, as well as repetitive behaviors. The degree of symptoms varies.

The National Institute of Child Health and Human Development defines autism spectrum disorder to include autism, Asperger’s syndrome and pervasive developmental disorder not otherwise specified.

There are many professions involved with assisting children and adults with autism spectrum disorder and so much is changing about what works best, Hoesel said.

“We’re certainly doing everything that we can to help provide some options that legislators can look at to help simplify a very complicated situation,” Hoesel said.

Toby Cherney said the state needs to make it easier for parents to access services.

“We constantly have to fight, battle, appeal just to get any kind of equipment or environmental modifications for him (Alexander),” she said. “It’s just a constant battle.”

It’s also hard for families in rural areas to have to travel to access services and specialists, she said.

Vicki Peterson of Bismarck said she knows the strain autism puts on families. Peterson is a family consultant for Family Voices of North Dakota, an organization that supports families who have children with special health care needs.

“I can sit from 9 o’clock in the morning ’til 2 o’clock in the morning talking to families,” she said. “They’re just begging for somebody to talk to.”

She emphasized the need for more family support in the state. She also wants to see incentives for autism service providers to work in the western half of the state, where she says services are lacking.

Trisha Page of Horace would like insurers to cover autism therapies. She said she hates to feel like she’s asking for handouts, but said the costs involved with having a special needs child are high.

Her 10-year-old son, Kyle, was diagnosed with autism at age 2 after a series of stressful doctor appointments. First she was told he was a slow speaker, then that he had a hearing problem.

One doctor did a 15-minute assessment, labeled Kyle with autism and then left, Page said.

“There I was with my 2½-year-old son, trying to figure out what was going on, what just happened, and the guy left for the day,” Page said. “My world had just been blown up in my face.”

Jamie Whitlow of Dickinson also discussed the struggle to get help after the autism diagnosis for her now 4-year-old daughter, Kyrie. She said she’s spent “hours and hours” on the phone trying to figure out what was best for her.

She said it was crushing to hear the diagnosis and “just be left hanging.”

“There was so much anger and animosity and fear because you had to figure it out on your own,” Whitlow said. “That was the most frustrating part about it.”

Getting help

Hoesel said she appreciates the feedback from parents on how to improve services.

“I know families will tell you that there needs to be more, and that’s why they (legislators) are doing a study,” she said.

The legislative Human Services Committee has spent recent meetings listening to testimony from parents and from individuals with autism to learn more about the struggles they face.

“Some people have found some services available, and some people haven’t,” said Rep. Al Wieland, R-West Fargo, the committee chairman. “So, we’re trying to determine what it is that we may be able to do to assist in helping them find the services that they need.”

Hoesel said there is a need for a central person or office solely focused on autism issues, as well as for better communication about where to go for help.

In the meantime, she recommends parents contact their school, doctor or regional human service center if they aren’t sure where to turn. The North Dakota Center for Persons with Disabilities at Minot State University also is an option, she said. Family Voices of North Dakota is another resource.

There also is an online autism education program offered through the University of North Dakota.

The Jamestown-based Anne Carlsen Center has an autism specialist who covers eastern North Dakota, said Lorena Poppe, the center’s autism services director. The center is in the process of hiring an autism specialist for western North Dakota, she said.

Other autism professionals are primarily based in eastern North Dakota, but the Anne Carlsen Center wants to expand services in western North Dakota in the next year.

The public also can request free training from the Anne Carlsen Center to learn more about what autism is, approaches to help with skill development and information about various therapies, Poppe said.

The state and schools have taken steps to provide autism training opportunities for teachers, Dodge of DPI said. North Dakota will also be updating its autism state guidelines, which provide direction on how students are identified, served and educated.

The legislative Human Services Committee will continue to discuss autism services in the coming months before deciding what legislation it may propose to the full Legislature. The next committee meeting is May 30 in the state Capitol.

Organizations that can provide more information about autism

  • North Dakota Department of Health’s Resource Booklet for Children with Autism Spectrum Disorder: ndhealth.gov/cshs/resourcebooklets.htm

  • Anne Carlsen Center Autism Services Director Lorena Poppe: (701) 934-1144

  • North Dakota Center for Persons with Disabilities: www.ndcpd.org or (800) 233-1737, ext. 3008

  • Family Voices of North Dakota: www.fvnd.org or (888) 522-9654

  • Regional human service centers. Phone numbers can be found at nd.gov/dhs/locations/regionalhsc

  • University of North Dakota’s autism spectrum disorder program: http://distance.und.edu/degree/?id=asdCERT2

Finneman is a multimedia reporter for Forum Communications Co.

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