If someone in your immediate circle of family and friends isn’t affected by autism, chances are you know someone, somewhere, who is.
Experts estimate that nearly 1 in 150 individuals have a diagnosis involving the complex neurobiological disorder, more accurately described as ‘autism spectrum disorders.’ They often have difficulty communicating and frequently exhibit impaired social abilities. Currently, no cure exists for autism and there are no known preventive measures.
A diagnosis of autism, however, is by no means a hopeless one. Several organizations around the greater St. Louis area offer support to parents and people with autism, ranging from intensive parental training to individual therapy to legislative advocacy. Autism Speaks is an international organization dedicated to providing information, resources and outreach services about autism to the community. The group, made up of parents, service providers and scientists, works tirelessly to fund research, advocacy and service opportunities.
Ellen Hager, a parent of two autistic children and a volunteer with Autism Speaks, reported that, in part, the organization serves as a clearinghouse of information for parents and other care providers. They have developed a ‘100 Day Tool Kit,’ a detailed packet of information that helps parents through the potentially baffling time that can follow an initial diagnosis of autism.
Colleen Dolnick, an Autism Response Team Coordinator with Autism Speaks, says the group does not necessarily serve as a support group for parents. Rather, it provides, among other things, an online resource guide that allows parents to search by zip code for services or therapists.
The organization has recently started providing services to individuals transitioning into adulthood. “This is a new focus for us in 2009,” Dolnick says, “Adults have always been on our radar. Now we have to step up to [help them] find employment and to help them access services they need to be successful. Autism doesn’t stop when you’re 21.”
Dolnick reports that the funds raised by Autism Speaks also are applied in grants to the community, so that therapists and scientists can develop a wider range of services for individuals. One local organization that has received grants from Autism Speaks is the Judevine Center for Autism. Headquartered in St. Louis, Judevine provides a number of services for parents and children, aimed at making their lives as productive as they can possibly be.
Linda Haley, VP of Development and Communication at Judevine, proudly noted that the center is known worldwide for its three-week, intensive parent training program. “It’s our signature program,” she says. “Parents are pretty tired at the end of it, but they receive training to help for the child’s entire life.”
One of the program’s most unique aspects, Haley says, is that parents, not therapists, set the goals for the children. “The parent chooses what they want the child to achieve,” Haley says. The center also offers a wide range of therapies aimed at both children and adults. They work with diagnosed individuals of all ages and with those at all points along the autism spectrum, giving guidance and support as they navigate and negotiate their life paths. “We want to focus on what they can do, not what they can’t do,” Haley notes.
Diagnoses of autism are far more common now than they were 20 years ago, however experts differ on how to explain for the increase. Haley believes one reason may be that pediatricians have become more aware of autism and have received better training in diagnosing the disorder. “The number of diagnoses of mental retardation has gone down and those of autism have gone up,” she says.
Hager asserts no universal explanation exists for the apparent increase in autism. “We don’t know why,” she says. “So that’s why it’s important to do research. It’s going to affect everybody. These children will grow up and be in the community. It’s a moral thing that we need to figure out.” Regardless of the reasons behind autism or the treatments, experts agree that individuals with autism can lead productive lives. “We want people to live their fullest lives, absolutely, always,” concludes Hager.