18 Jul RelateNow.com goes live to tackle autism
Madison, Wis. – When her daughter Molly was 18 months old, Maureen Fitzgerald knew something was different about her, especially compared to other children the same age.
She did not form complete sentences and only repeated language she heard, she pulled her hair and was aggressive with other children, and she showed unusual sensitivity to sounds such as running water.
“I saw a [another] girl playing with a doll, and pretending to bathe and play with the doll. My daughter didn’t know how to do that,” Fitzgerald said.
Fitzgerald mentioned these concerns to her pediatrician, but was assured that everything was fine. Molly did not outgrow these problems, however, and when she moved to preschool Fitzgerald began seeking a developmental assessment.
After months of delay, Molly got an assessment when she was four, diagnosing her with a PDD-NOS (pervasive development disorder not otherwise specified) – a high-functioning form of autism, a developmental disability.
Even though Molly’s autism was less debilitating than other forms, with a higher level of social skills and communication, it still required treatment and a massive time commitment. Schoolteachers had to be notified of triggers that agitated Molly, and behavioral therapists had to be scheduled.
Additionally, while Wisconsin is more accommodating than other states in terms of treatment providers and funding sources, treatment for autism still has a high cost. “The type of support you need – what we call interventions – are very expensive, and insurance companies are reluctant to pay for it,” Fitzgerald said.
Relating to a problem
It was the desire to remove these roadblocks that prompted Bret Shaw and Kelly Gatzke to create RelateNow.com, a Web site designed as both a networking tool for autism families and a database of various treatments. The site recently went live and was unveiled at the Autism Society of America‘s annual conference.
Shaw and Gatzke are no strangers to constructing a health website – they work on the Comprehensive Health Enhancement Support System at the University of Wisconsin-Madison, working respectively on the user interface and research angles. They also are familiar with the pain of autistic parents. Their young son was diagnosed with Asperger’s Syndrome, which is similar to autism, in 2004.
“We as parents, people living in Madison, working at the university with all these resources around us – don’t have a clue,” Gatzke said of the general understanding of autism. “All of the options, what they recommend is so expensive. Even families with two jobs can’t afford it.”
RelateNow, she said, grew from their own experiences in treating their son and realizing that there were countless symptoms and treatments for autism but no efficient way to organize and learn from them. Additionally, they realized that the availability of useful treatments is, in many ways, limited. Some areas don’t have any doctors familiar with autism at all, while others have doctors using treatments that are inapplicable in several situations.
One site, multiple states
Shaw and Gatzke worked with multiple health practitioners across the country, determined to a comprehensive collection of autism references. Contributors to the site include Andrew Paulson of Integrated Development Systems in Madison, Rick Solomon of the PLAY Project in Michigan, Vivian Hazell with Beyond Boundaries of Autism in Wisconsin, and James MacDonald of Communicating Partners in Ohio.
The information provided by physicians includes more than 500 activities and training methods for autistic children, and over 100 video clips showing how to identify their symptoms, interact with them, and manage their specific triggers. Gatzke said each of the activities is displayed in an Amazon.com-type setup, where users can rate the treatments and leave comments for future users.
“What we’re doing is not providing ourselves as experts, we’re trying to find a way for experts to put their information on the Web and disseminate it to families,” Gatzke said.
This base of information might be of particular benefit to families in rural areas, who often have no doctors familiar with autism close by. RelateNow is working on technology to work remotely with families and even have appointments via video conferencing.
While the site will be launched specifically in Wisconsin, Illinois, Michigan, Pennsylvania, and Ohio – where participating clinicians are from – the founders will make overtures to other states that may have fewer treatment options. “[RelateNow] will deliver helpful information, not just to people in Wisconsin but to families in Oklahoma, [or] Idaho, where they have no services at all,” Gatzke said.
Sharing the care
Making the information available was a key goal of RelateNow, but the couple also wanted to make sure the site helps simplify the often overwhelming demands of raising an autistic child. For a subscription fee, users can customize a home page through RelateNow that can direct them to videos and treatments that may be relevant, as well as plan the child’s schedule.
Fitzgerald said the scheduling function is accessible to everyone involved in the care of the child – parents, teachers, and therapists. In addition to informing new therapists, it also makes sure treatments are not being repeated or are conflicting.
“The frustrating thing is you have multiple committed, loving people helping your child, but it’s difficult to get them all communicating with each other. The speech language teacher had no idea what the occupational therapist is interested in,” Fitzgerald said of the organizational problems.
Through RelateNow, users also will be able to network with parents of children with similar conditions, forming parent-to-parent support groups. They can discuss which treatments work and which ones fail, and share stories of their child’s development that may help other families.
“We can’t change the fact that children have autism, but we can change some of the things around it, like the frustration of the family and effectiveness of services we received,” Shaw said. “There are a lot of people good at consolidating the news, but not pointing out its relevance to parents and families.”
Growing with her
Although the site is optimized for children age two through 10, Bret Shaw hopes it will grow with adolescents and teens. In addition, the site will incorporate video interviews with autistic adults, encouraging them to network through online support groups.
That long-term focus is a comfort to parents like Fitzgerald, whose daughter now is 11. While she has finished with her intensive therapy, she is learning how autism makes her different, an often difficult process and one of many RelateNow wants to address.
“As my daughter transitions from adolescent to adult,” Fitzgerald said, “I think the site will grow for her entire lifetime.”
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