SPECIAL REPORT: Autism In the Northland

Autism Spectrum Disorder (ASD) is a developmental condition that can cause significant challenges in social interaction, communication and behavior.

DULUTH, Minn. – Autism is something many children and their families have to live with every day and it’s more common than you might think.

Life with autism is a reality Amanda Keppers knows too well.

She has a 16-year-old son named Chris.

“Very artistic, he loves arts and crafts,” said Keppers. “He loves the mechanical pieces of anything.”

You can call him a musician too.

She hopes people will look at Chris as a person and not a diagnosis.

“You want them to see the loving, caring, very creative person that he has become,” said Keppers.

Chris has lived with autism since he was two.

Chris is now 16 years old, but has the maturity level of a six-year-old.

“It’s something different every day, but at the same time it’s repetition every day,” said Keppers.

Keppers remembers seeing some of the signs but says she was in denial.

“I talked it up to he was a boy, so they learn slower, which his physician at the time did tell me, so I ran with that,” said Keppers.

Autism Spectrum Disorder (ASD) is a developmental condition that can cause significant challenges in social interaction, communication and behavior.

“So they might not be making as good of eye contact as other kids their age,” said Essentia Health Dr. Elizabeth Homan. “They might not be interested in playing with other children.”

Signs of autism at any age include a child avoiding eye contact, a struggle to understand other people’s feelings or echolalia, the repetition of words or phrases.

There’s autism level one, two and three.

“The higher the number of the level, the more support that the child is in need of,” said Homan.

A child’s development can vary depending on where they are on the spectrum.

“Level one autism, they can often be involved in the community, involved in their schools, but the thing that connects all of the different levels and across the spectrum is a delay in social communications skills,” said Homan.

Dr. Homan treats kids with autism as young as 18 months.

She says ideally children should be diagnosed by age two or three at the latest.

“The sooner that you identify autism and start treatment, the much better the prognosis is long term,” said Homan.

The Centers for Disease Control and Prevention estimates about 1 in 68 children have been identified with autism spectrum disorder.

It’s four times more common among boys than in girls and it’s the fastest growing developmental disability in Minnesota.

“It makes it complicated to diagnose this disorder. we don’t as of yet have a blood test or imaging test that can be done to diagnose it,” said Homan.

Keppers says at times it’s a constant battle.

“You wish you can take away the barriers that are allowing him to really show his true self and what he is able to do,” said Keppers.

When Chris was younger he received treatment at the Scottish Rite Clinic in Duluth for two years.

The family based service center provides speech and language services for children.

“We invite families or caregivers into the therapy sessions and make them part of the interaction process,” said Scottish Rite Clinic Speech Language Pathologist Tamara Pogin.

Scottish Rite Clinic tries to get children involved by coming up with different techniques, like the SCERTS model.

It works on Social, Communication, Emotional, Regulation and Transactional Support.

“It’s a way to kind of look at what are the problems the child is having and how can we help with that, into the nitty gritty, can they do this five times? can they do this 10 times?” said Pogin.

Occupational and physical therapy is another common practice.

“It depends on how severe the issues are, how long the therapy will need to go on for,” said Homan.

Although there is no specific medication to treat autism, options like applied behavioral analysis therapy can be effective.

“It’s utilized to help increase adaptive functioning in children diagnosed with autism,” said Minnesota Autism Center Clinical Associate Kristie Hills.

The Minnesota Autism Center focuses on three areas during this type of treatment.

“Communication, socialization and restricted repetitive stereotyped behaviors,” said Hills. “We help them either develop the ability to utilize language or utilize a communication device.”

One child with autism is just that, one child with autism.

Each case is different.

“Because autism is a very, it’s a spectrum disorder and it can vary from individual to individual each of our treatment plans are individualized to the children’s specific needs,” said Hills.

Typically a child with autism is seen in multiple settings at school or by a medical professional.

Scottish Rite has a two year program at no cost.

The clinic uses fun therapy spaces to get the child more involved.

“We have this really cool window, down here. so a lot of times parents will go under there wave to their child or knock on the window and it gets their attention,” said Pogin.

Family participation is also key in supporting a child with autism.

“It’s a lot of detective work and problem solving and talking with parents and research to make their life better,” said Pogin.

That’s exactly what Keppers tries to do for Chris.

“We found ways that he learned, I think, better than outside resources did,” said Keppers.

Her mother is Chris’ primary caretaker.

“Without the family network, I’m not sure where we would be,” said Keppers.

When Keppers thinks about her son’s future, they worry.

“I’m terrified, very terrified,” said Keppers.

But they don’t see themselves as victims.

“So just by seeing that pretty little face of his, that’s what keeps us going in the right direction, because he’s worth it,” said Keppers.

Joseph Kotiranta is a triple threat.

He’s a singer, writer and public speaker.

Research has shown almost half  the children identified with autism have average or above average intellectual ability.

So despite being diagnosed with autism many have the potential to thrive.

“I can appear to be able to do most of the things that everyone else can do,” said Kotiranta.

Kotiranta has high functioning autism.

He attends Insight School of Minnesota and will deliver his class graduation speech in June.

“It felt pretty awesome that I’d be able to do that,” said Kotiranta.

At the age of two Kotiranta stopped speaking for six months because of his autism.

It took him a year and a half to start speaking again.

“For me I never thought of it as I have autism, so I can’t do this,” said Kotiranta. “I always thought of it as i have autism, so I can figure out how to do this.”

Health experts have watched many autism patients like Kotiranta continue to make big strides as they go through childhood.

“If they are engaging in play, they’re going to then learn,” said Pogin. “If you could play with someone then you can learn from someone that’s really how I see progress.”

At the same time there’s still room for improvement when it comes to providing the necessary resources for ongoing treatment.

“We have a deficit in services for people after they age out of our school system, so after you turn 21 there’s a drop off of services,” said Homan.

SPARK is another effort to better understand autism.

It’s a national project that collects genetic information from thousands of families affected by autism.

The data collected is meant to give researchers a better grasp of the condition.

“There’s a lot of evidence that it’s a mixture of genetics and environmental influences on genetics,” said Homan.

The Minnesota Autism Resource website has up to date information and resources for the Minnesota autism community.

“The journey with autism is a marathon or a special needs child is a marathon not a sprint,” said Pogin.

Keppers says she won’t give up and just wants Chris to be safe and happy.

She hopes people who don’t know a lot about autism will take time to educate themselves.

“If they can just look and offer a gentle smile to the mom or the child it really helps a lot when people can acknowledge that you’re not being judged, but they understand,” said Keppers.

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