CHARLESTON — One in every 110 children will be diagnosed with autism this year, and with numbers increasing every year, local specialists believe it’s time to have an Autism Resource Center in eastern Illinois.
As an initial fundraiser for the center, organizers invited Temple Grandin to speak to the community about autism. After all, Grandin would know best, she’s lived with autism since she was diagnosed in 1950.
About 850 people — a record crowd — filled the Dvorak Concert Hall and two overflow rooms to hear her talk about living with the neurological disorder, said Gail Richard, chairman of the department of communication disorders and sciences at Eastern Illinois University.
The Dvorak has never sold out and tickets were gone before Labor Day, Richard said, and she attributed the event’s success to Grandin’s story.
Grandin was diagnosed with autism at a time when most of the information about the disorder had yet to be discovered, and specialists’ initial reaction was to send these individuals into an institution or special school, Richard said.
But Grandin helped change that perspective.
“This whole disorder used to be interpreted as a behavioral disorder, but now, we know it’s a biochemical neurological disorder,” Richard said. “Their brains are just different in how they respond to the world, and if we can figure out what’s triggering that response, you won’t have the behavioral problem.”
In 1950, the world had a different view of autism, “and for someone in that era to go through regular education culminating in a PhD in animal science to become a professor of animal science at Colorado State University is motivation for some families.”
However, her personal accomplishments aren’t the only fete she’s tackled for autistic individuals — she was the first person to give a voice to autism, to tell what’s it like to live with the disorder.
“Before that, we would speculate, but because she’s so verbal and intelligent she could explain things for professionals and parents as to why children do certain things,” Richard said. “So many things in the past were interpreted as behavioral were really because of sensory differences within the autism spectrum.”
During her talk in Charleston, Grandin shared her new drive for autistic adults — helping them transition into the workplaces and becoming functionally independent young adults.
“And that’s a challenge if you don’t work through some of those symptoms that make them so different or make them stay within the disability of autism,” Richard said.
“She says don’t coddle them because the world isn’t going to do that. If they are going to become functional they are going to have to learn how to cope.”
She also stresses parents, teachers and specialists to focus on their abilities and develop those, and not to exacerbate what they can’t handle.
“Do stuff,” Richard said quoting Grandin. “Make them do stuff, and sometimes they don’t understand it and sometimes it’s hard, but that’s the way they are going to learn.”
Grandin also addressed “taboo” subjects that are sometimes tough for parents to hear such as the debate over whether vaccinations and immunizations cause autism.
“There is no science behind that claim so to stop the immunization process is not helping your child,” Richard said quoting Grandin.
The packed concert hall held families, teachers, communication disorder specialists, students studying communication disorders, former EIU students with disorders and people who are curious, Richard said, and most didn’t expect the lecture to be so entertaining. Grandin’s dry humor makes the plainest statements humorous, said Richard, who presented with Grandin years ago.
“There are spokespersons out there that are not well-versed in research and data with their subjects, but Temple is incredibly well-versed,” Richard said. “When she talks about something she has done her homework and knows that it is valid. She isn’t going to present until it is.”
Grandin’s lecture was Sept. 27 and headlined the 2012 Fall Autism Conference at EIU. The weekend also included a seven-hour workshop on Sept. 28 with speaker Patricia Prelock, who specializes in studies of individuals within the autistic spectrum.
Though Grandin gives lectures across the country, she offered to visit EIU for a trivial fee, because she knew the event was a fundraiser to bring an autism center to EIU, and the need is there. In Richard’s office, about 40 percent of the individuals evaluated are in the autism spectrum, and her staff has a waiting list of clients.
“Even though we’re a rural area we have a pretty good incidence of the autism spectrum, it’s a wide continuum of severity and there’s a lot of those individuals out there,” Richard said.
In the past statistic showed about 1 in 500 children would be diagnosed with the disability, but this has jumped in recent years to the current figures.
“Right now the biggest challenge for these families, who the child’s showing behavior problems and the possibility of autism is suggested, is it can take as long as a year for an evaluation,” Richard said.
“That’s a year you lose to start treatment, to start working through some of the characteristics that are problematic, and it can be very disruptive for a family, relatives, a school, even a neighborhood,” she said. “The sooner you start treatment and the interventions you can start to turn things around and the younger the child is, the better.”
However with the speech therapy program on campus the faculty has only so much capabilities to see clients, which forces families to larger cities for evaluations and treatments.
“If we have a center we can dedicate a faculty member and a graduate assistant to these families for evaluations,” she said. “Then we want to start branching out and consulting the school districts who have these children their classrooms.”
Richard said they hope to talk with teachers and evaluate students in their classroom settings to see where the behavior begins with sensory overloads.
“We can also offer classes for teachers, parents and grandparents to know what to do in case of a meltdown.”
Once the center is running, she hopes to include an interdisciplinary approach to treatment and community education.
“We have a lot of resources we can tap on campus,” Richard said.
She hopes to utilize the psychology department to work with parents about how to deal with the disorder every day and the health and recreation department, which trains physical educators, to help teachers let kids become as productive as possible.
Finally the team would work with disability services on campus to help EIU students on the autistic spectrum adapt to college life, Richard said.
“These are bright people, these are Temple Grandins, and their abilities to be successful in college is going to be based on whether there is a way to make them comfortable in a new environment,” Richard said. “Academics aren’t going to be the problem.”
To know how to live in a campus environment most students ask someone but the individuals with autism don’t know how to approach a stranger.
“The word autism means alone, and that’s the biggest thing — they stay in their own world and they don’t know how to function in this new environment.”
However, Richard hopes the center can help people from the time they are diagnosed as child a into the transition of becoming a young adult in college to give them a chance to have success measurable to Grandin’s.
“I think for a lot of parents, in particular, who are starting out in the early stages of having a young child with autism it gives them a lot of hope that with the right treatments and if we do the right things it’s not going to stay where it is,” Richard said.
Grandin also started on the severe side of the spectrum. She was non-verbal until after turning 3 years old.
“(Grandin), with treatment and work, was able to overcome these things and look at where she is now,” Richard said.
“It is a challenging, long journey for these families and you need these glimmers of hope to give you strength to keep fighting that battle and meeting these challenges in a positive way.
“It will get better.”
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