By Joseph Robertia
When Tonja Updike’s child, Garret, was born 11 years ago, it didn’t take long for alarm bells to ring in noticing some odd behaviors: little eye contact with peers, playing near people but not with them or a preoccupation with cars wheels rather than the toy car itself.
“We knew something wasn’t right and we didn’t know what. We wanted to help him but didn’t know where or how,” she said.
Her son was diagnosed with autism. More specifically, autism spectrum disorder — a group of related brain-based disorders that affect a child’s behavior and social and communication skills.
Updike said that it was a relief to know what was going on so they could pursue treatment, but as a parent whose child had been newly diagnosed, it also meant navigating the foreign terrain of treatment options.
“You’re panicking and you feel alone. It’s a whole new world and a lot of people don’t even know what it is or what it means when they hear the diagnosis,” she said.
In order to help other parents in this boat, or those who have been navigating these waters for a long time, Updike, co-organizer Jerri Braun and a bevy of other volunteers held the Autism Society of Alaska’s Walk for Autism on Saturday at Soldotna Middle School.
“It’s a venue for those involved with autism to share their experiences, from parents to siblings and other family members, to members of the school district, to local agencies,” Updike said. “And we want all of these people to know what is available to them, since everyone may not be aware of all the resources in the state.”
This can especially be the case for single parents, adoptive parents and grandparents or other family members taking in and raising an autistic child.
“Some may have been diagnosed as infants, but some may not have been diagnosed until later in life,” she said. “Whenever they’re diagnosed, it’s important for people to have support and make connections, and that’s what we’re hoping to do with this event.”
In addition to all informative literature and dozens of educational booths set up for the walk, there also was a carnival area set up with games and sensory-related activities for children with autism.
“A lot of people with autistic kids just lock themselves in the house because they feel like there’s no place for us to go, so this allows them to come and have fun together,” Braun said.
The event also was a fundraiser for the Autism Society of Alaska. Braun said the organization does important work in Alaska and is especially helpful since parents in the Last Frontier are so far from the options and resources of the Lower 48. Saturday’s event included a registration fee and a silent auction with donated items, to raise money for the ASA.
“These funds allow ASA to bring speakers to Alaska and down here to the peninsula, to help new parents navigate on a variety of subjects related to autism,” Braun said.
Awareness of autism is increasing as the condition becomes better understood in society, according to Updike.
“According to the (Centers for Disease Control), one in 68 children now has autism, and part of that is the diagnostic tools are getting better, but more people are getting kids tested as awareness grows,” she said.
Updike said it is also important to start an intervention program as soon as possible once autism is identified. Children never outgrow autism, but their symptoms can lessen over time as the child receives appropriate treatment.
Misty Merriman can vouch for that, as her 13-year-old son, Maguire, functions much better after being in treatment for the past six years, she said.
“Flags went up so we got him into therapy at 3, but he wasn’t tested and diagnosed for autism until 7. It was a relief because, before that, we didn’t know what it was or what to do,” she said.
Merriman said that Maguire had it tough as a youngster. He didn’t like to be held or touched, preferred self-play to interaction with others, and certain noises, such as the reverberation in gymnasiums or locker rooms, could cause an overload to his senses.
It made her proud to see him Saturday, sitting at a booth in the center of the gym, interacting with the public as he sold the bracelets and key chains he had made.
“A friend showed me how to do it last summer,” he said. “I can make about three a day now.”
Merriman said that children diagnosed with autism can act completely different from one another and have varying capabilities, but whatever their diagnosis on the spectrum, all children with autism can learn and improve their functioning with the right support.
“(Maguire) is high-functioning, so he seems like a normal child with just a few autistic tendencies,” Merriman said. “Once we got him the right treatment, he was really able to thrive.”