Support for parents facing autism has come a long way
The Autism Society of Central Illinois makes connections for coping parents
Consider going to the doctor and hearing this: “Your son is autistic. He will never speak, he will never be able to swing on a swing, and he will never get married because he is incapable of compassion for another person.”
Then, “Here is a brochure. Good luck!”
Fifteen years ago, these things and worse were told to parents who went to the only developmental pediatrician in central Illinois, worried about their children’s lagging development and desperately looking for answers.
Jerry Selsor, a materials manager for Bunn-O-Matic Corporation, had just such an experience.
“We walked back to the parking garage in shock,” Selsor said, “like we had just learned about the death of a loved one. And this doctor kicks me to the curb – ‘Have a nice life!’”
There were no resources.
Lyn Becker, a special education teacher and administrator, knew her son had autism in 1999 when he was a year old. In her job, she had worked with autistic children and their parents, so she knew the signs. The diagnosis merely confirmed her heartbreak. After her son’s diagnosis (from a different doctor), she did her own research. She and her husband learned about “Applied Behavioral Therapy,” which at that time was not covered by health insurance. They spent $25,000 out-of-pocket in one year for 35 hours per week of Applied Behavioral Analysis therapy alone.
Today autism spectrum disorders are covered by many health insurance plans (Illinois is one of only 24 states that mandates coverage for autism spectrum disorders and their attendant therapies), but a diagnosis of autism is still a real financial problem for most families. In the March 2014 article “Economic burden of childhood autism spectrum disorders,” published in the journal Pediatrics, the authors conclude, “The economic burden associated with autism spectrum disorders is substantial and can be measured across multiple sectors of our society.”
The evidence they provide supporting this conclusion indicates that families with autistic children, on average, spend more than $14,000 per annum more in non-medical costs than families without autistic children. Families with autistic children spend more than $8,000 per year more on school costs than families without autistic children. Making choices and setting priorities – difficult tasks in any family – is an even more daunting task for families with autistic children.
It’s no surprise then that when faced with spending $30,000 for the “gold standard” of autistic therapies after his son was diagnosed, Selsor and his wife decided they couldn’t afford that. It must have been a difficult choice, but one they felt was right, given their financial situation and family situation. Selsor engaged immediately with the Auburn School District and worked closely with school officials to devise the best possible plan for his son. Now, 12 years later, Selsor says the effort he has put in with the school has reaped tremendous results for his son. However, Selsor notes, every child, every parent, and every family is different, and maintaining progress is a real fight that requires parents’ persistence and pressure on schools, teachers and therapists to follow through on treatments and educational plans.
It’s these differences in financial capability, family dynamics and individual autistic conditions, says Selsor, that make understanding autism and providing help for parents so important. Finding others facing those same decisions and dynamics was key in being able to continue fighting for his entire family.
After his son’s diagnosis, Selsor met a number of other parents of autistic children and started a parent support group in 2002. At first – and still today – they discussed the “little” things, like getting their children to take medicine or be able to get into the bath without a fight. Parents exchanged ideas and experiences, giving each other perspective and a sense of camaraderie, and contributing their own resources and research knowledge. Selsor said this was the kind of relief and support that parents, when overwhelmed with just getting through daily tasks, find invaluable, and helps them feel like maybe they and their children can survive this.
In 2004, Selsor’s group became an incorporated chapter of the Autism Society of America, the Autism Society of Central Illinois. He said he chartered with ASA, instead of many other worthy organizations, because he felt the ASA was the most parent-based and supportive for all parents of autistic children and for all people with autism.
Since those early days, ASCI has grown its programming considerably. In addition to family movie night, ASCI offers monthly social events like family bowling, swimming and other activities that most people take for granted. ASCI also offers “sensory friendly” holiday events, where competition is discouraged. Finally, ASCI offers grants, scholarships and information and assistance to parents, families, caregivers and educators for financial help to pay for therapy, support in attending educational events, and help to go to summer camps like Camp A.S.P.I.R.E., a six-week program offered every summer to improve autistic children’s social skills.
Lyn Becker, who served on the ASCI board for a time, said, “Camp Aspire is for higher functioning kids with autism spectrum disorders who, because of their high functioning, aren’t qualified for aid. So we developed curriculum, raised money and started Camp Aspire in 2006.” Her son has gone every year, “and he just loves it,” she said.
Both Becker and Selsor feel that the most important ideal ASCI upholds for them is the ideal of community and “being connected with other people in our shoes, with people facing the same things we are,” Becker said.
ASCI supports the entire family, Selsor said.
Now, at the age of 15, Selsor’s son is in high school and doing well. “And by the way,” he says, “my son can swing on a swing, and he is the most compassionate person I have ever met.”
Amy Spies of Chatham teaches writing to all students regardless of age, gender or ability. She is interested in helping people fully articulate their experiences, ideas and observations in a voice of their own.