The statistics are, in a word, alarming.
According to a report recently published by the Centers for Disease Control and Prevention, in which a group of 8-year-olds was surveyed by the Autism and Developmental Disabilities Monitoring (ADDM) Network, one in every 36 children was estimated to have autism spectrum disorder (ASD). The ASD prevalence estimates of 8-year-old children within the AADM Network, notes the report, have increased markedly over the last two decades, rising from one in 150 in 2000 to one in 44 in 2018.
The reason behind the rise is complex, however, and, similar to other childhood disorders like ADHD, can be partially attributed to a nationwide increase in awareness and screening. Yet a grave demand for proper care remains, and families are struggling to secure quality ASD treatment for their children.
April Gardner of Sussex, a mother to 10-year-old Gavin, shares their story — and why she hopes an increase in ASD education will garner a more emphatic response.
An Early Diagnosis
“Gavin was a really happy baby, but he was missing all of his milestones,” recalls April. “He didn’t walk until 16 months old. He was making noises, but verbally he was missing words. He walked on his toes, and he loved flapping — to music and to other things. That was his excitement trigger.”
His pediatrician confirmed that Gavin did, indeed, exhibit markers for ASD, and the Gardners were referred to the Preschool and Infant Neuropsychology Testing (PINT) Clinic at Children’s Wisconsin, where Gavin’s diagnosis was confirmed. “The doctors knew instantly, which is never an easy journey,” April says, “But I’m glad we discovered it early.”
A deep dive into local therapy and resource options followed, and, by age 3, Gavin began an in-home, applied behavior analysis (ABA) program through Caravel Autism Health. “Our world got flipped upside down trying to figure out the hours and scheduling of the therapy he needed,” April recalls.
ABA is an evidence-based therapy often used to treat ASD, and, according to the Child Mind Institute, helps kids learn skills and lessen problem behaviors, using positive reinforcement as a teaching strategy. For Gavin, such daily living skills included potty training and how to dress appropriately.
“Gavin elopes* and has safety boundary issues, so we could put programs in place there, too,” explains April, noting that Gavin’s in-home therapy also included community outings. “It was hard for us to take Gavin to the grocery store, so we’d meet there and try little bits at a time. We’d go through my list, and he’d put a box in the cart for me.”
[*Editor’s note: As defined by the National Institute of Elopement Prevention and Resolution, “elopement” refers to an individual with cognitive challenges or special needs who wanders, runs away from or otherwise leaves a caregiving facility or environment.]
A Need For Structure
“With Gavin, if you do things repeatedly, that’s when he gets it down,” April continues. “Unfortunately, when things don’t go in the order that he learned them in, that can also upset him greatly. He’s very structured and has major routines for how he learns things. We’ve learned to park in the same spots, and we try to keep things as close to how he learned things as possible. But we also have to learn to flex, and learn how to redirect when things don’t go that way.”
The resulting behavior — which, in Gavin’s case, can be severe or aggressive, says April — is perhaps the most challenging piece of their story.
“Public places are hard for us,” she explains. “When Gavin does have a meltdown because he’s not understanding or can’t communicate to us, people just think it’s a kid throwing a fit. For me, that’s really tough as a parent. The education [about ASD] just isn’t there.”
April recalls a recent visit to a local health and fitness center, where Gavin is enrolled in swimming lessons, and the judgment she felt from onlookers when he experienced an outburst. “I had to get really thick skin [after the diagnosis],” she adds.
Unsolicited comments and stares aside, April says the triggers that may accompany “normal” outings, such as a visit to Target, were difficult to understand and cope with initially, as well.
“I, as a neuro-typical person, don’t notice the beeps of the checker or the music that is on,” she explains, “but every time we’d walk into Target, initially Gavin would do OK. And then he would lose it and hit his head on the floor. I would have to calm him down. There have been times where I’ve left full carts.
“As a mom, you’re going to keep trying. That’s part of life. You have to go shopping. You don’t realize they hear things or their sensory inputs are so spiked compared to ours and that’s what throws him — and you’re cuing the environment that’s upsetting him.”
As a parent, learning how to connect and communicate with Gavin, who is nonverbal, was also a learning curve, adds April. “He doesn’t interact or play [with others],” she says. “He plays independently. When you find stuff that he does really like and you can do with him, we definitely go all in. We try to find whatever we can to engage with him. That’s important — to find some connection that brings you your own special relationship.”
Aging Out
April says Gavin spent six years in ABA therapy, including two years spent in clinic, but “aged out” of his program, despite the fact that, cognitively speaking, he still needs care. “There are other companies that will take kids up to age 21 [years],” she explains, “but the waiting list is 2 to 5 years. It’s really defeating — to think that it could take years to get into something that’s truly helpful and beneficial to our kiddos.”
“Staffing has always been an issue,” notes Brenna Jacquette, a paraprofessional at Gavin’s elementary school who has worked with children on the spectrum for seven years. “Most ‘line technicians’ or ‘therapists’ come and go, as most of them are college students trying to get their feet wet with experience. I don’t think that most of the applicants who get the job truly know what they’re in for. It takes a lot of patience, dedication and perseverance. This job isn't for the weak; there are definitely harder days, but those wins, big or small, whether it's maintaining eye contact for 5 seconds, a wave, or a verbalization, are what makes those harder days worth it.” MKE