By KATINA TENGESDAL, Staff Writer, ktengesdal@minotdailynews.com
When Jamie Helbling first moved to Minot in February 2007, she was seeking better information about her son's developmental disability.
She attended an autism workshop put on by Souris Valley Special Services in September 2007, where she met several other parents in the same situation.
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Katina Tengesdal/MDN - - Minot Area Parent Support for Autism Spectrum Disorders, or MAPS-4-ASDS, meets to discuss upcoming plans for the group.
They banded together to form an autism support group, now called MAPS-4-ASDS (Minot Area Parent Support for Autism Spectrum Disorders). The group is a regional subchapter of the Autism Society of North Dakota.
"Sometimes it's good to know that other people are going through the same thing," said Barb Johnson, a member of the group. "It can be so isolating, and you start to think you're a bad parent."
"This (autism) is a spectrum disorder, and all of our kids are so different," said Angy Edison, vice president of the group. "When you start to say, 'This works for me, did it work for you?' -- that's part of what this whole thing is about."
Many autism support groups have split into different groups to accommodate different diagnoses, different therapies or different ideas. Minot's group wants to stay together in spite of these differences.
"It's really turning into a statewide issue. There's fractions of groups. Instead of focusing on what makes us different, we wanted to focus on what makes us the same," said Heather Wittliff, group president.
"That's the difficult part, but it's also what we celebrate," Edison added.
The group's original focus was to help individuals with a new diagnosis. That focus has since expanded to include families who care for all ages and stages on the spectrum as well.
"We've expanded to become more inclusive, whether the child is newly diagnosed or in their late teens, to help each other through difficult times, and to make friendships," said Jamie Helbling, the group's secretary and treasurer for the group, said.
Life on the spectrum
For group members, being around others that understand is important. Sometimes children on the spectrum have public tantrums and parents can feel embarrassed or guilty.
"A lot of times, people point their finger and say you're not disciplining your child," Helbling said. "They don't know the child has neurological problems, because the children show no outward signs of that -- but they will have behaviors."
"Other people might not understand in the same way. They don't have to leave a playdate mortified," Johnson said.
Jerri Flygare, an adult with an autism spectrum disorder, helps give perspective to the parents in the group on what it's like to have the disorder.
"Some discipline just makes the child angry, and the behavior worse. People don't know what's there, and they just think it's bad behavior," Flygare said.
"A lot of these kids will go through fight-or-flight responses," Helbling said. "They get in a circumstance where they're going to fight to win. It gets scary sometimes."
Advocacy, education
The group advocates the safe-and-sound program, which allows parents to register children on the spectrum with emergency personnel. The program was started, Flygare said, by a man whose son had a tantrum in a toy store. Store employees thought the boy was being abducted.
The safe-and-sound program can be found on the autism society's Web site at (www.autism-society.org).
"If these kids get in a difficult situation, they'll act belligerent, or defensive," Helbling said.
Edison agreed that sometimes children on the spectrum can act in a surprising way. Her own daughter darts away at times, and ended up at someone else's house. The startled neighbors called police.
"It's not only a difficult situation for law enforcement, but for others, too; because they don't know how to handle the situation," Edison said.
Through the difficult situations, group members have learned to keep their sense of humor.
"When we're talking together, even if we don't have an answer, it's still a relief. Some things, we just laugh about. We may not have come up with an answer, but it feels better," Edison said.
The group also serves an educational purpose for members, and professionals have attended as well. Various speakers address the social and medical issues facing individuals on the spectrum.
"A lot of these kids have other health issues, too, like ADD or ADHD, or immune disorders," Helbling said.
"It's definitely a co-morbid disorder," Wittliff said. "Some might also have dietary allergies, sleep disorders, anxiety or depression."
The members of the group have all tried various therapies for their children, from nutritional supplements to light therapies to gluten-free diets and neurological chiropractic, Helbling said. Some have also tried applied behavioral analysis, which is the only theory proven scientifically to work.
"Everything we do with these kids is experimental," Helbling said. "Many things are not covered by health insurance. Some of us have high grocery bills for specific diets, the grocery bill at least triples."
"When we put our son on a special diet, we found our pocketbook wasn't better, but his behavior was better," Wittliff said. "It just adds stress to a marriage, and to siblings."
"At times, parents have to choose between therapy and housing," she added. "We do make some tough choices."
Members of the group hope to eventually create a resource packet for parents new to the area, to inform them of services and diagnostic testing options locally. They also hope to generate more funds for the group so they can continue to grow and to raise awareness about autism spectrum disorders.
"We're here to share information with each other, share social support, and to share the resources and services we have found that are available," Helbling said.
"Our goal is to raise awareness in the community and to provide caring for families," Wittliff said.