ELKHART — In just a month’s time, two autism treatment centers opened in Elkhart County, but it didn’t even make a dent in the gap for children in need of services.
With seven centers in the Michiana area, Lighthouse Autism Center finally opened its first building in Dunlap about a month ago. Goshen City Behavioral Health opened shortly after, a dream of owner Holli Perrin, who was a registered behavior technician.
“A year and a half ago I was driving from Goshen to South Bend every day as a provider,” Perrin said. “I knew that there were kids from Elkhart County going all the way to South Bend. (...) That’s four hours of a parent’s day that they’re spending driving and two hours for the kid in the car. The need is here and it’s increasing because parents are seeing results.”
Lighthouse Autism Center was founded in 2012, by a Mishawaka couple who have an autistic child, Gregg and Sandy Maggiolo. Their son attended one of the first applied behavior analysis centers in the state. At the time, they had to travel to Indianapolis to receive services.
Applied behavior analysis, or ABA, is the only program recommended by the U.S. Surgeon General for the treatment of autism. It uses trained registered behavior technicians and a series of activities and skills to teach autistic children necessary life skills.
A seemingly basic activity, the process is made more difficult by the disability that is autism, according to Clinical Director for Goshen City Behavioral Health Michael Fantetti. He posed an example of teaching an alien to make a sandwich, citing that if someone doesn’t know what a refrigerator is, or what bread is, or meat, teaching them to make a sandwich can be a very complex process.
“We’re literally breaking it down, sometimes, into what seems like really small steps and then we’re teaching that skill bit-by-bit until we get to some of those bigger goals,” he said.
A board certified behavioral analyst must assess each child who enters an ABA therapy and designs a custom program for each child. Children generally require one to two years of services at an ABA center before they are ready to graduate.
The average diagnosing age for a child with autism in Indiana is 6. Perrin said that’s late in a child’s development, and it’s because too few doctors are diagnosing.
“I only know a handful of doctors that diagnose in the area and most of them are not in Elkhart County,” Perrin said. “When you get on a diagnosing list, once you get a referral, it could be up to a year until you even see someone to diagnose. Then when you get diagnosed it could be up to a year or two years until you can start receiving services depending on availability for applied behavioral analysis because there’s not enough service providers.”
An increase in diagnoses of autism has left ABA centers inundated. Although more centers are opening, it’s not enough to make a large impact, advocates say.
A revamping of the definition in 2013 to include other spectrum disorders in the new Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association may also be to blame for the rise in autism diagnoses, specialists say. Those disorders include autism spectrum disorder, Asperger’s disorder, Rett’s disorder, childhood disintegrative disorder and pervasive developmental disorder, according to the DSM-5.
“I think we’re also getting better at catching things earlier on and paying more attention to the signs,” Allen said. “We have better diagnostic tools and we’re jumping on it before they’re 10, 11 or 12.”
In 2018 the CDC determined that approximately 1 in 59 children is diagnosed with an autism spectrum disorder. Boys are four times more likely to be diagnosed with autism than girls and it can be diagnosed as early as 2 years of age, though many children are still in the process of being diagnosed around age 4.
“We want them to be diagnosed early because the earlier they are diagnosed, the more effective ABA therapy can be,” Lighthouse’s Director of Marketing and Support Services Maggie Gendel said.
Treatment plans vary from ABA services, speech therapy, family counseling, in-home services and more.
Developmental neuropsychologist Chad Edwards of South Bend is one of the few physicians in the area qualified to diagnose autism and he said treatment varies so much, because the condition varies so much.
“Kids who present with autism can have a variety of different problems. Kids can fixate on specific things, or their interests can be really fixated on one thing and then change,” Edwards said. “Nowadays I’m seeing a lot of kids watching YouTube obsessively or watching the same episode. They’re usually very specific. YouTube is a quick way to cater to those impulses. You can have kids that get really obsessed with certain topics and they won’t stop thinking about it for hours. You can have the repetitive behaviors. Tapping, rocking, posture where you tighten up your arms, rubbing the top of your head really hard. Some of the things look like ticks so some parents will come in thinking their child has ticks when it’s really autism.”
Many parents might not even notice that the problems are out-of-the-norm until their child begins interacting with other children their age.
“In the case of high functioning kids, there’s a lot of families out there that just have a really good way of managing things at home,” Edwards said. “When you don’t have those mark symptoms, a lot of kids are likely to get missed by providers and even families until they’re older.”
Children may fixate on a particular hobby, obsessing over it and becoming overly skilled in a certain topic, such as video games or music. They might isolate themselves, choosing to obsess over a certain skill rather than spend time with other people or friends.
“In some situations, parents are really excited because they think it’s a positive attribute when it’s really a problem,” Edwards said.
He added, “There’s no medication for autism, you’re medicating the features, hyperactivity, mood swings, outbursts. Even though a lot of these kids struggle with friendships, they want friends, but they don’t usually have friends, so it can be very sad and very challenging for the family.”
Once a child is in ABA therapy, a variety of activities can be used to teach them to function in society, but for the most part, it comes down to positive reinforcement.
“In the same way that these kids might not be motivated by learning these things alone, we have to meet them where they’re at,” Perrin said.
Only four autism treatment centers exist in Elkhart County, though, and two are less than two months old.
“As long as I have 40 kids on a waiting list, that’s 40 kids too many,” Perrin said. “There are not enough of us here to service all of these kids. It’s not a competition; we’re working together to serve this community.”