Years after autism diagnosis, Hyvari doing ‘great things’
Editor’s note: This is the first in a series planned in conjunction with April’s Autism Awareness Month.
WORTHINGTON — Despite an early autism diagnosis of her son, Ethan Hyvari, Karrie Scholtes refused to allow others to label him as one.
“I wouldn’t let them put him in a box,” Scholtes said about Ethan.
The Worthington family has come quite a long way since Ethan’s autism diagnosis approximately 14 years ago. They have not only embraced the label, but want others to know that the outcome is unpredictable and to live each day with hope.
“Just because your child has autism doesn’t mean they won’t do great things,” Ethan said as an address to parents. “They will do great things. They could be working with NASA or be the next big star basketball player, the next movie star. Give them a chance; you never know.”
The Worthington High School sophomore is a high-functioning autistic teen. He spends the vast majority of his free time behind a sheet of music and playing one of a slew of instruments.
Music, Ethan said matter-of-factly, has been the activity that has helped him cope most with autism on a daily basis.
“With classical (music), it makes me forget about the real world sometimes, and I go into imagination land whenever I play music,” Ethan said, smiling.
Ethan participates in band, choir and orchestra at Worthington High School. He is also a member of the Worthington Area Symphony Orchestra (WASO) and South Dakota Youth Symphony Orchestra in Sioux Falls, S.D.
Ethan’s favorite instrument is the viola, although he also plays violin, trumpet, piano, tuba, trombone, saxophone, flute and a recorder, many of which were self-taught.
“He’s pretty quick at teaching himself how to play,” Ron Hyvari, his father, said.
While the ability to play around 10 instruments would be considered a major accomplishment to most, Ethan is not totally satisfied. The 16-year-old has also begun composing his own music within the last two years.
A crush on a girl inspired Ethan’s first complete symphony — “Liebst Du Mich?” (German for “Do You Love Me?”). The approximately 90-page, 57-minute symphony includes parts for all symphony instruments, all composed by Ethan.
Worthington High School Band Director Jon Loy said Ethan’s passion for music has no bounds.
“Ethan is a self-motivator and gets a task done almost before you even have a chance to explain what needs to be done,” Loy said. “He is a great role model to others who seek a positive outlook on life; he likes to include others around him and share his enthusiasm and passion for music.”
Ethan already has his sights set on post-graduation plans to attend either Augustana University in Sioux Falls or Concordia College in Moorhead to pursue his dream of becoming a composer.Bumpy ride
While Karrie and Ron beam with pride discussing Ethan’s accomplishments, they admitted that raising an autistic child has not been without great challenge.
In fact, Ron said, it was a ton of work and required a lot of patience.
“He required 24-hour labor when he was little,” Ron said. “He slept maybe four hours every day. If he took a nap in the afternoon, it meant he didn’t sleep at night.”
In addition to the inability to be content throughout the night, Ethan exhibited other potential indicating factors of autism, including tics, stacking and organizing items at a young age and verbal delay. Ethan also struggled with many sensory issues, including noises, lights and textures — issues he has since grown out of.
Karrie said it was really Ethan’s younger sister — born 14 months after Ethan — that gave she and Ron a scale that caused concern.
“His sister was talking more than he was and doing other things,” she said.
With the help from various community resources, a team of professionals sat down on the Hyvaris’ living room floor with an approximately 18-month old Ethan to find some answers.
“He had a bunch of fine motor skills, they couldn’t even test him,” Karrie said about Ethan exhibiting skills beyond the testing scale.
Having answers for Ethan’s behavior was not necessarily an immediate relief for Karrie and Ron or their parents.
“Both families had a hard time saying he had autism,” Karrie said. “They’d say, ‘oh, he’s too cute to have autism. He’s just a slow learner.’ It was a battle.”
Overcoming the autism label and stigma took a lot of effort. But, as Ron pointed out, it was something that was highly necessary.
“You can’t get services without a label,” Ron said about the assistance Ethan receives through the school district, which he said have been a godsend.
Ethan never understood he was autistic until after the fourth grade, when his parents sat down and discussed it with him.
“I know it’s kind of strange, but I never really knew I had autism,” Ethan said. “It should have been obvious based on the classes I was taking, but I just took those as normal classes that anyone would take.”
Ron and Karrie often butted heads on when it was appropriate to tell Ethan, as Karrie didn’t want his peers to judge him and see him as different and Ron thought it might be helpful.
“I think we were probably both right, and obviously it worked out,” Ron said.
In fact, it has worked out better than either could have imagined, despite what they were prepared for upon the early diagnosis.
“(Specialists) would always tell us, ‘you’re going to watch him fall off. He’s not going to be able to keep up with his peers,’” Karrie said. “They told us he’d grow up and have to live in a group home. They tell you that, and you kind of lose that dream for your kid.”
They’re thankful for the outcome, but it also took a lot of extra effort to teach Ethan — who didn’t start speaking until kindergarten — how to integrate into normal social situations.
That included trips to the grocery store, one in particular that is still an emotional memory for Karrie. A woman at the grocery store told Ron that he should not bring Ethan out in public because he was so naughty.
“That’s what I wished people knew,” Karrie said through tears. “It’s not that he was naughty. It’s that we had to teach him to walk in the store and go to the store. Yeah, he was 2 or 3, but to have other people to tell you to keep your kid out (hurts) — because it made her uncomfortable, I guess.”
While the family realizes that each autism story is unique, Karrie said she wished she would have known it could turn out like it has.
“Everyone wanted us to be really realistic about it, but you kind of lose your dream for your kid when they tell you, ‘he’s going to be a little different,’” she said. “I shouldn’t have done that. I should have just changed it. That’s what I want younger families to know — that just because you’re here now, doesn’t mean that’s always where you’re going to be. You never know what skill they’ll find and what talent they’re going to have.”
Karrie, Ron and Ethan all expressed sincere gratitude for a team of people that has helped them throughout their journey, which includes but is not limited to District 518 staff, Ethan’s music directors and his stepdad, Doug Scholtes.
Ethan doesn’t let living with autism be a crutch in who he is and wants to become. His friends don’t, either.
“My friends know that I’m autistic,” Ethan said. “But at the same time, they don’t make it a big deal.”