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Locals raise awareness, funds for the cause

The number of children getting diagnosed with autism is rising at an alarming rate. For decades before the 1990s, about 4 to 5 out of every 10,000 children in the United States were believed to be autistic. Today, that number has soared to one in every 150 children, or nearly 67 out of every 10,000.

The numbers locally correlate with this national trend. According to Denise Burich, the autism consultant for Independent School District 318, there are approximately 35 students diagnosed with autism in the district, compared to about five students 10 years ago. And Kathy Birt, autism consultant for the Greenway, Nashwauk, Hill City, Deer River and Floodwood school districts, is currently working with or monitoring about 52 autistic children, compared to “much less than that... maybe two” ten years ago.

The cause of this rise in autism incidents is unknown. It could be that there are simply more autistic children today than there were 20 years ago. Or it could be that doctors and specialists are getting a lot better at diagnosing it. According to the Autism Society of America, most experts agree that autism is a neurodevelopmental disorder. No one knows for sure what causes it, but research suggests that a complex mix of environmental factors (such as immunizations or pesticides) and genetic factors trigger the disease. There is no cure.

Children diagnosed as autistic can fall anywhere along a broad “Autistic Spectrum” -- from mildly autistic to severely autistic -- but most exhibit common symptoms, such as problems with social, emotional and communication skills. The list of possible symptoms is long and often overlaps with those of other behavioral or neurodevelopmental disorders, but, according to Thomas Cook, executive director of Itasca County Children’s Mental Health Services, a simple thing to remember is that autistic means, “focused on yourself.”

For example, Cook explained, a mildly autistic child may be disinterested in other people or may have trouble interacting with others, while a severely autistic child may not be able to speak at all, may not be aware of their physical bodies or bodily functions, and may be hyper-sensitive to sounds and textures (such as fabric). Some autistic children have emotional or behavioral disorders in addition to autism. Some are identified as gifted and talented. None could be identified as autistic simply by their physical appearance.

Because of the wide range of symptoms that fall under the autism “umbrella,” until recently the disease was often misdiagnosed or undiagnosed. Many experts attribute the increasing autism incidents, at least partly, to changes in the criteria for diagnosing the disease, as well as increased awareness and recognition of autism, across the spectrum.

In the Grand Rapids area, various school districts, grassroots parent groups and the county’s Children’s Mental Health Services are all working hard at every level to raise awareness of autism, to generate funds for autism research, and to provide resources to those affected by autism.

Denise Burich, for example, is constantly working to ensure that autistic children are properly identified and are being taught by the best and most appropriate learning methods available.

The ISD 318 autism consultant, with help from special education teachers and other involved school staff, sets up appropriate programs and interventions and strategies for students identified as autistic. She provides in-services and workshops to teachers and to community agencies that support families of autism. She provides parents with resources that connect them with services provided by the state and the community. And she’s got a resource library that’s available to all families and school staff affected by autism.

When an autistic child gets a little older, if he or she begins to display more serious behavioral problems at school, the county’s Children’s Mental Health Services staff steps in and assigns the child’s family a case manager to oversee treatments and monitor the child’s progress.

Cook said treatments are usually behavioral, in which a child is taught and rewarded for good behavior, or is designed more like play therapy, a technique called the Greenspan Approach. Depending on a child’s severity level, treatments can include monthly, weekly, or even daily sessions with speech and language pathologists, behaviorists and other specialists. Though a child will never “grow out” of autism, research has shown that early diagnosis and intervention can lead to significantly improved lives as teenagers and adults. Early intervention programs are available in Itasca County, said Cook, but parents need to know where to look for them. The overall system, he said, is not as user-friendly as in some other states.

Living in rural areas, said Burich, can also present challenges to families of autism. Most autism therapists, behaviorists and other treatment specialists, she said, tend to be located in more densely populated areas, where there are heavier concentrations of autistic children to treat. This means that autistic children in rural areas don’t always receive the same attention from specialists as children in metro areas. Rural areas also usually receive less funding for other programs that benefit autistic children.

“We just don’t have the numbers to support autism programs like camps and after-school programs and groups,” Burich said. “We work with the Northeast Region Special Education Cooperative to try to provide speakers, workshops and in-services for parents, but [in the past we’ve had] poor attendance.”

Sheri Schmoll, the parent of a 7-year-old autistic boy, offered a possible explanation for the low turnout: “There are so many families that are out there that have a child on the spectrum, but it’s hard for them to come out,” she said. “It’s hard for them to face and accept that diagnosis, and everything they have to go through.”

But increasing the community’s awareness and understanding of autism may help some families become more comfortable attending such workshops and in-services. That’s one reason why Schmoll, along with her friend Melissa Mirand, have been working on putting together a local chapter of the Autism Society of America (ASA) -- to increase awareness of autism in the community, and to serve as a source of support and information for families of autistic children.

“We want to show people that there is support out there for families that have a child with autism,” said Schmoll. “We want to spread the word so families know there are other people here that are in the same boat as them.”

Schmoll and Mirand met in a family support group, which meets the first Wednesday of every month at 6:30 p.m. at the Children’s Mental Health building. For more information about the planned local chapter of ASA, call Schmoll, at 327-1501, or Melissa Mirand at 360-1615.

“I think it’s going to be a good group,” said Schmoll. “It could be really helpful. We treat the kids with integrity. They’re people too. They’re not just a kid on the spectrum. I don’t look at my kid every day and think, ‘Oh, he has autism and he has to be fixed.’ I look at him and think, ‘Oh, that’s Thomas. That’s just who he is.’”

The upcoming local chapter of ASA isn’t the only grassroots effort going on in Itasca County in the interest of autism -- The Jilly Beans, a team of five local women, will be walking for the second year in a row in Minnesota’s “Autism Speaks: Walk Now for Autism,” a national event that raises awareness of autism and funds for autism research.

Last year, The Jilly Beans raised about $2,000 through pledges, and this year the group’s goal of $2,500 is already well-surpassed. In fact, as of this week, the team -- consisting of Tara DeGuiseppi, Randi Jurgansen, Leeha Gustason, Trina Cogswell, and Lisa Vekich -- are the third-ranked team in the state for pledges earned.

The group walks on behalf of “Jilly Bean” Gillian DeGuiseppi, Tara’s 5-year-old, severely autistic daughter, and others with autism. It is the only team they know of from this area that is involved in Walk Now for Autism. They’ve also raised funds for the cause by running a snowcone stand during the Marble Centennial and by holding a rummage sale. Next up, they plan to run the kids’ games at the Pengilly Centennial.

“A lot of people don’t even know what autism is,” said Tara of why The Jilly Beans started participating in the walk. “Plus, the fundraisers are a lot of fun because we’re all friends.”

To get involved in The Jilly Beans, or to make a donation, call Tara at 245-1976 or visit The Jilly Beans website, www.walknowforautism.org, and follow the links.

http://www.grandrapidsmn.com/articles/2008/08/10/news/doc489ce06428846476292655.txt