2 northern Utah families describe dealing with autism
OGDEN, Utah (AP) – Haiden McCaig likes all of the airplanes at the Hill Aerospace Museum. Like humans, there’s something special about each.
“They are all unique in their own way,” Haiden, 12, said.
Kenzie Schelin, 8, loves her animals. She has ducks, chickens, goats and two pigs at her home in Roy.
Kenzie and Haiden have autism spectrum disorder, which isn’t uncommon in Utah. The National Center on Birth Defects and Developmental Disabilities did a study in 2010 that tracked 23,756 children in Davis, Salt Lake and Tooele counties. The study concluded that 1 in 54 children in Utah has autism spectrum disorder.
According to the report, the state’s prevalence rate is higher than the prevalence rate in the country, which is 1 in 68.
Despite the relative frequency of autism, stereotypes and misconceptions are still common, and each kid represents different aspects of the autism spectrum.
“I think people would say ‘what is she really good at?’ ” Sarah Schelin said. “They assume – ‘Rain Man’ comes to mind, or something like that – that she is going to be able to, I don’t know, read the alphabet backwards . she is really good at things but she is not the stereotypical math wiz or whatever that people assume all autistic people are.”
She said meeting one autistic kid means just that: you’ve only met one autistic kid. Kenzie writes with both hands. Others are good at other things, but they are all different.
At the museum, Haiden sat at a table in an activity room with his mom and brother Eli. All the kids in the room were trying to make a helicopter out of a piece of paper. Haiden, in a black T-shirt with bold, yellow letters – “Always be yourself unless you can be Batman. then always be Batman” – finished his helicopter before others did, and without a museum volunteer directly telling him what to do.
He never looked over at another table but completed his project partly by listening to what a museum volunteer was telling those at another table.
Haiden also knew about many of the war airplanes and their artillery on display – he talked about the C-7 Caribou, an airplane used to transport troops and supplies during the Vietnam War.
Haiden was initially diagnosed with autism when he was 3 years old. Just three years ago he was also diagnosed with unspecified anxiety and attention deficit hyperactivity disorder.
“I think people are like, ‘Oh, but he looks normal,’ and then he’ll do something that is very out of character,” his mom, Stacy Bernal, said. “You have no idea what’s happening.”
Like many but not all people with autism, Haiden has a hard time communicating. He doesn’t make eye contact and defaults to answers in monosyllables, though he often uses video games to relate to the real world. He likes Fortnite and Minecraft, two popular video games where players build 3-D worlds, fighting enemies and accomplishing tasks or missions.
His therapist, Cara Smith, whom he sees a twice a week, is working with him to imagine being in the video game when he needs to calm down; she told him to think about putting his stress in a Minecraft block and watching it wash away down a river.
Smith, a registered behavior technician, often works with Haiden on coping with social problems, social cues and, recently, how to tie a shoe. The therapy is called Applied Behavior Analysis, which uses positive reinforcement in an effort to modify certain behaviors.
Elisa Rague is Haiden’s former therapist and supervises Smith.
She said treatment varies for each person, but she recommends a minimum of six hours of therapy per week. Each session has an average cost of $70.
“His therapist is awesome; they do a lot of exercises on mindfulness,” Bernal said. “It’s always one thing to practice those in a setting at home, but then it doesn’t necessarily always translate into the real world when he does get overstimulated. But, you know, we practice.”
Haiden’s therapies are covered by the family’s health insurance.
“We are so lucky to have great insurance,” Bernal said. “Otherwise I don’t know what we would do.”
Not every family can afford a therapist and insurance coverage is sometimes complicated.
Rachal Green is the executive vice president of Utah Behavior Services. Her center does autism diagnoses and she said the timeframe to get a final diagnosis varies.
She said there are different assessments and an interview component typically done as part of the diagnosis process. The assessments are mostly administered by a psychologist, as many insurance companies want a final diagnosis to be formalized by an expert.
For those parents who don’t have insurance and can’t afford the treatment, Green said Medicaid is sometimes an option to cover the cost of the applied behavior analysis.
But that still leaves plenty of people who don’t qualify for Medicaid and can’t afford therapy in a gap.
Kenzie, 8, sometimes takes her tablet and watches movies in the den with her two pigs. Her mom, Sarah Schelin, says Kenzie’s “happy place” is among her pets.
Schelin said she knew there was something different about her daughter long before her diagnosis. For example, Kenzie did not crawl until she was 14 months old.
Kenzie was diagnosed with autism spectrum disorder about two years ago, when she was 6 years old. Schelin said getting the full diagnosis was expensive.
“We actually can’t afford counseling, it’s kind of embarrassing,” she said. “A lot of ours is just figuring it out as a family, and we are lucky that she’s got a family that supports her; like, her siblings love her.”
The Centers for Disease Control and Prevention estimated annual costs of intensive behavioral intervention at $40,000 to $60,000 per child.
And that’s where the animals come into play.
The old farmhouse, or the Schelin Six, like the family calls it, serves as something of a decompressing environment for Kenzie. She can go outside and play with the two pigs or with her goats. She can also help her father, Paul-Michael Schelin, in the garden.
While she’s a fairly talkative little girl, Kenzie has a fixated fear of throwing up. She does not have to feel sick, but the continuous fear is enough for her to ask daily about it.
Her mother has learned how to deal with it. She knows she can’t say “I don’t think so” – that answer is not definitive enough for Kenzie and won’t reassure her.
When Kenzie asks, Schelin answers by asking if Kenzie feels sick. When Kenzie says “no,” her mother reassures her she is not going to throw up.
They go through that routine every morning, every night and sometimes throughout the day.
Brushing her teeth is particularly difficult. Sometimes Kenzie has to give herself a pep talk – she looks at herself in the mirror and counts to 25, or 100.
“There have been mornings – I’m not perfect – I am frustrated, and it’s been 45 minutes and everybody is late and I’ll grab her and brush her teeth, and she gags the entire time,” Sarah Schelin said. “She cries, and then it’s a wreck for everybody else.”
IT’S A BIG DEAL
Both families have tried to debunk certain myths and misconceptions that people may have about kids with autism. They use Facebook videos to document some of their days, the ups and downs, the beautiful and the ugly. And dealing with change is complicated for both Haiden and Kenzie.
“It’s very characteristic for autistic people (to) like their structure and they like knowing what’s coming,” Bernal said.
He likes Tuesday lunch – sweet and sour chicken – at Mount Ogden Junior High School. A couple of weeks ago, however, the lunch menu changed and Haiden had a meltdown. Bernal had to pick him up from school.
She said she could see why people might judge her parenting as coddling or overprotecting Haiden. She sometimes questions herself but said situations like these can affect Haiden deeply.
“I think the biggest thing that bothers me is that people will look at him and think he’s just being defiant, or he’s a bad kid, and he’s not,” Bernal said. “He reacts differently to situations and it sometimes might be that maybe he just shouts or maybe there’s an outburst and that is not reflective of him being a bad kid; it’s him trying to regulate kind of what’s going on in his mind.”
That also has an effect on Haiden’s ability to make friends. He shares a lot of similarities with many kids in his grade, even if he is particular about the things he likes to talk about. She wishes others could pass that first barrier and see Haiden is smart, funny and quirky.
For Bernal and many other parents, the lack of understanding is about more than social anxiety. It’s sometimes about safety.
Last year, The Arizona Republic reported that a 14-year-old autistic boy was tackled by a police officer after he thought the kid was on drugs. The kid was holding a piece of string to calm down, something that many autistic kids learn to do as a way to calm down.
Bernal said she worries something like this could happen to Haiden.
“It was scary to me that special needs kids have a target on their back because they look normal but they are acting oddly,” she said.
As for the future, both Bernal and Sarah Schelin said they are ready for everything and anything.
“I wonder if he’ll go to college . I wonder if he’ll live with us, which, again, that’s fine if that’s the case,” Bernal said. “He has talked about wanting to be a dad . so I hope that he has all those things that everyone else has, but we’ll see.”