Though autism is not new, broad awareness of it is. Not so long ago autism meant Rain Man to the average American. Autistic individuals were either viewed as a little quirky or hospitalized if severely affected, with few options in between.
Today it's unusual to not have heard of the disorder. There are autism support groups for parents, grandparents and siblings, and social groups for those with autism. Government and health care systems are raising autism as an issue. Even cruise lines are promoting autism-friendly vacations. These and many other positive changes have occurred over the past 15 years and are, in large part, thanks to forces like the Autism Society of Indiana, Indiana Resource Center for Autism, Autism Speaks and outspoken advocates.
Dana Renay, executive director of the Autism Society of Indiana, says among the major gains made is the fact that parents, teachers and physicians are now more willing to talk about autism and not simply justify away its symptoms. Though awareness is just one piece of the autism puzzle, it's key to spurring tangible progress.
Indiana, proudly, made tangible progress in the area of autism treatment in 2001 by passing the first mandate requiring health insurance coverage for individuals with autism. Today 34 states have similar mandates.
"Without a doubt the biggest policy change that has made a tremendous impact on people's lives is the health insurance mandate," said Michele Trivedi, the mom and advocate who led the insurance mandate effort and is now manager of The Arc Insurance Project.
While the mandate doesn't cover everybody, Trivedi says between it, the Affordable Care Act marketplace and commercial market, families this year should be able to find an insurance policy for their children with autism.
"It's wonderful to have a situation where your child's neurological condition is treated as it should be," she said.
Beyond insurance, Trivedi is upbeat about the future for the autism community. She points to a new emphasis on self-advocacy that's helping autistic individuals learn to be their own voice. They are speaking out in the media and at school to educate others about the disorder and how it affects them.
"I think having choices and respecting people's choices and self-determination is wonderful to see emerging. Some people identify very much with having Asperger's. Seeing them advocate for themselves for acceptance is not something we saw happen when my daughter was little. I hope that will translate into better social and employment opportunities for people with Asperger's and high-functioning autism and all people with autism," said Trivedi.
Cathy Pratt, director of the Indiana Resource Center for Autism, agrees autism awareness has improved, but believes much work remains. "I think we've done a good job among those who work with children. Adults are still tough for folks to understand. And for many, those who are at the upper end of the spectrum and for whom the disability is less visible, there is still broad misunderstanding," she said.
Carin Vittorio, area autism advocate and mother to two teenagers on the autism spectrum, takes a similar viewpoint. She says support for kids transitioning into adulthood lags. It's a big issue that parents, schools and others are grappling with today.
She points to Noblesville schools where a college/career support service team is beginning to help kids with Special Needs learn trade skills. For instance, some kids in this program get internships where new skills can translate into employment opportunities. For autistic kids, internships can provide opportunities to practice social skills like interacting with their boss and peers and making appropriate decisions. Vittorio sees this type of program as a step in the right direction.
Advocates are pleased with the gains in autism awareness, but what they need, according to the Autism Society's Renay, is to hear from people living everyday with autism. The more voices for autism, the stronger its presence and the bigger gains that can be made.
What changes would you like to see for the autism community?