Autism is a complicated and often misunderstood condition. Just ask those whose lives have been touched by it.
“He used to be known as ‘The Adam Bomb,’” says Linda Weinmaster, of Lawrence, whose 18-year-old son, Adam, was diagnosed with autism when he was 5 years old. “He would throw himself on the floor with terrible temper tantrums, and he would destroy everything. People just assumed I was a bad parent.”
Or ask Jacqui Folks, Eudora, whose 10-year-old son Ethan has autism. For years Folks struggled going out in public.
“It was so much easier to stay at home than risk going out and Ethan having a meltdown,” she says. “There are so many triggers out there, and we just can’t control them.
“Autism can be very isolating,” Folks adds. “I remember not going to a family dinner once because it was on the Plaza. I wanted to go celebrate with everyone, but I didn’t want Ethan to act up and throw his food.”
Autism is a general term used to describe a group of complex developmental disorders, and while it affects no two individuals in the same way, there are common characteristics among those who suffer from the disorder, including sensory processing challenges, speech and language delays and impairments, and trouble with social interaction.
“Their sensory systems are on full-tilt 24 hours a day,” Folks says.
Dealing with those challenges can be time-consuming and expensive. In addition to weekly speech therapy, Ethan has a private in-home therapist who comes several days a week, to provide social and emotional assistance. Few of these services are covered by health insurance.
Weinmaster, who found help with sensory integration therapist in the Lawrence school district, says, “With autistic kids it’s a constant battle for rights and services. And our insurance doesn’t cover any of this.”
Understanding the myriad of issues facing those touched by autism, Autism Speaks was founded in 2005 with the goal, according to their website, “to change the future for all who struggle with autism spectrum disorders.”
The organization is dedicated to raising funds and public awareness for autism, advocating for families (which includes lobbying to get necessary services covered by insurance companies) and offering support to individual families.
In the five years since the organization has been established, Autism Speaks has awarded millions of dollars in grants, including $941,556 to researchers in Kansas and Missouri who are investigating the causes and the most effective treatments for autism, according to regional Autism Speaks walk director Jennifer Smith.
For families who have recently received the diagnosis, Autism Speaks offers a 100-day kit, which provides information on the disorders covered in the autistic spectrum, including information on causes and symptoms, resources, helpful forms and safety tips.
On Saturday, Folks and her family will join thousands of others to support the work of the organization at the Kansas Speedway at Walk Now For Autism Speaks.
This is the third year of the walk, and while cold weather and flu threats kept people away last year, they still managed to raise $190,000 and had over 5,000 in attendance according to Smith.
The goal for this year is to have 8,000 participants and raise $200,000. While there is no registration fee, Smith encourages donations to help support the cause.
“We will have activities for all ages, a sensory tent, a teen tent … We also have a food area called Taste of Support, and they are local restaurants that support the autism community,” Smith says.
“When Ethan was first diagnosed with autism, I spent all my time in the library trying to figure out what we should do,” Folks says. “I would have given anything seven years ago to have Autism Speaks.”