David and Julie Smith knew their son Jacob was struggling with something more than a speech disorder years before they received his autism diagnosis.
“We’re really lucky we both have such supportive families. We all knew there was something different with Jacob. We just had to keep digging,” Julie said.
At age 2, when other children were putting together sentences, Jacob was nonverbal. But his pediatrician assured them his speech would come with time.
At age 3, they took him to a child behavioral specialist who diagnosed his deficit as a speech disorder. For a year, he received assistance through Tennessee’s Early Intervention program, which provided in-home therapists to work on his speech and motors skills. He attended a special preschool offered by the Johnson City School System where he continued to work on his speech and motor skills and also on behavioral issues.
But it wasn’t until a few months after he began kindergarten that Jacob’s teachers recognized there was something more serious amiss and recommended another evaluation.
Finally, at age 5, a specialist in Knoxville labeled Jacob’s condition as high-functioning autism and referred the family to the Autism Society of America’s East Tennessee Chapter. And at last, doors began to open and the Smiths began finding answers that fit and people who understood what Jacob was experiencing.
“Before that, we were on our own and everything Jacob had, the evaluations, the therapies, all of it was out of pocket,” Julie said.
Even after his diagnosis, they had to battle for insurance coverage that did not come without the threat of a lawsuit under Tennessee’s Autism Equity Act that mandates coverage for occupational and speech therapy for autistic disorders at the same level an insurance company provides for any other medical condition.
Tennessee law also provided an aide to assist Jacob at school. And slowly but surely, his father said, he is making progress. “He’s still pretty much nonverbal but he’s gaining in his speech, a little bit at a time. We’re coming to find it’s a slow process.”
Jacob, now 7, also is a member of the ASAETC Friendship Club, a group of autistic children from families all over the region who regularly get together for fun activities in low-stress settings.
The club’s outings to area parks, pool parties, sensory friendly movies and other public activities that autistic kids often cannot enjoy because of their special sensitivities are arranged just for them and their siblings and parents. The club’s intent is to allow kids with autism to practice their social skills while doing things they normally don’t get to do and gives their parents a chance to relax.
Even more than the difficulty in getting a diagnosis or obtaining insurance coverage, Julie said, “One of the biggest challenges I see parents face on a daily basis is not with their child, but with how people perceive their child and them as parents.
“When a kid has a meltdown in public, a lot of times people look at that as a tantrum and think the child is just acting out and their parents could easily correct that with a good butt busting, which isn’t the case,” David said. “Yelling at Jacob makes him 10 times worse. I have learned I have to really get down on his level and tell him everything is going to be OK, and he’s just fine.
“Every kid on the (autism) spectrum is different. Some have full speech and others have none at all,” she said. “Or some of them have sensory issues, little things, like tags in their clothes they can’t stand touching them that cause them to have meltdowns.
“Unless they’ve experienced it, they don’t understand,” Julie said of the casual observers who are too quick to judge a child as spoiled and parents as ineffective.
“Friendship Club is nice because it lets parents let their kids be kids,” without worrying about the meltdowns and what other people think, she said.
“Support is there, but it is limited and very scattered,” Brook Dickerson, executive director of the East Tennessee ASA chapter, said. “Services are fragmented and not always available, especially in rural areas.
“The therapies that children need are very expensive and they are not covered by insurance. Parents pay for them out of pocket and often children don’t get the therapies they need because their parents can’t afford them.”
To ease that hardship, reform measures for autism insurance coverage are pending in states across the country, including Tennessee. Early this month, Tennessee released a new specialty license plate to help the ASA raise funds for awareness, education and advocacy.
The state requires 1,000 advance sales to put the autism plate in production and this week had already received more than 200 orders. The plates may be ordered online at email@example.com.
Dickerson said the ASA’s focus is on education for parents, teachers therapists and others and to direct them to the resources that are available, the chapter has a web site under construction at www.asaetc.org.
In the meantime, Dickerson encouraged anyone in need of information to call her at the chapter’s Knoxville office at 865-247-5082, email firstname.lastname@example.org or write to Brook Dickerson, ASA-ETC, 2890 Alcoa Highway Knoxville, TN 37920.