Photo by Jenny Kirk Will Brigger, a Marshall Middle School seventh-grader, spends a little independent time on the computer recently at the Marshall-Lyon County Library.

MARSHALL — In some ways, Will Brigger is a typical 13-year-old. He loves spending time with friends and on the computer or iPad. But in other ways, Will is very unlike many of his peers, especially when it comes to communication, emotions and social skills — all of which can be very challenging for children with autism.

While using the computer at the Marshall-Lyon County Library recently, Will looked just like any other 13-year-old boy — until he started flapping his arms.

“That means he’s happy,” said Will’s mom, Jamie Brigger. “Other people show their emotions differently. Flapping is just what he does when he’s really excited about something.”

Brigger, who was inspired to speak out about her family’s experience with autism in recognition of Autism Awareness Month in April, hopes that by helping to educate people about autism, there may be less judgement and more tolerance.

“I’ve found that if people educate themselves about autism, they’re probably more accepting,” Brigger said. “There are things that we might find very easy and take for granted that might be really hard for people with autism. Many autistic kiddos have sensory issues — just simple things like lights, food, clothing, eye contact and stuff — that a neurotypical person would not. Waiting is really, really hard and so is understanding all the social cues.”

Brigger said that oftentimes, behaviors exhibited by autistic children are mistakingly thought to be intentionally naughty behaviors.

“They’re trying to communicate something through a behavior,” she said. “So people shouldn’t judge a kiddo on a behavior they might see because it might be their only form of communication.”

Brigger added that a lot of people with autism lack common social skills and are often blunt and to the point.

“We had to teach Will how to say, ‘How are you?’ and to wait for a response, so that give and take of a conversation,” she said. “Sometimes they might come across rude. They might be socially different and people don’t always know how to take that.”

Some children on the autism spectrum do not like being touched. Brigger said Will is OK with touch, but that his pain tolerance is unusual.

“He dropped something on his toe and his toe was black, but he didn’t make a sound,” Brigger said. “So he won’t give a normal response like, ‘Ouch, I got hurt,’ or he’ll be super extreme. There are other times where he’s not able to verbalize what happened, so then we’re just guessing.”

One of the things Brigger said she’s judged the harshest for is allowing her son to use an iPad at a restaurant, adding that people don’t understand that it truly helps him feel comfortable. And in reality, she sets limits on the iPad.

“A lot of kids with autism have an underlying condition,” she said. “Some have seizures. Will’s secondary diagnosis is anxiety. So for us, socially out in the community, just to be able to use technology helps ease his day. If we go to a new restaurant, we can look up the menu beforehand. Having his iPad has allowed us to go to so many places because he can be on it and then slowly check out his environment. He can go at his own pace. So that’s been helpful for us.”

Will was 5 years old when his family moved to Marshall from Wisconsin. Community advocate Dianne Beckendorf was his team lead back then.

“Autism has been part of my life for over 24 years as a part of my career,” Beckendorf said. “Most importantly, it has allowed me the opportunity to support people, families and teams to better the lives of those affected by autism.”

Beckendorf said the children she’s met on her journey are on various levels of the autism spectrum.

“Autism is a complex developmental disability that affects language development, social interactions and relationships,” she said. “Autism has specific deficits that affect social communication skills and restrictive repetitive behavior patterns. Awareness of child development milestones are an important piece in the early diagnosis and intervention is key to developing skills for the future. We all know someone with autism. It is important to continue to educate on the signs of autism and share awareness as a community.”

According to Beckendorf, education, training and awareness are the keys to improving the lives of those affects by autism. She said her passion grew when she was introduced to Applied Behavior Analysis (ABA) therapy by Behavioral Dimensions more than 20 years ago.

“This allowed me to readily support children and adults on the spectrum in our community,” Beckendorf said. “The most remarkable part of providing supports is the outcome of each person and their success, but most of all, the reward is being a part of it on their journey.”

Beckendorf is thrilled that Behavioral Dimensions is looking to expand its services to the Marshall area in the very near future.

“The growth from the benefit of ABA therapy was remarkable — from being unable to verbally speak to being able to speak or use non-verbal gestures or communication aids to speak and having the ability to participate in community activities, family events and with their peers,” she said. “People with autism are growing, living successfully in our community and following their dreams.”

Beckendorf is quick to point out that there are still limited resources for families to tap into.

“Autism diagnosis can be a very challenging road for families and any support they can get makes a big difference in the outcome,” Beckendorf said. “The exciting part is a new resource coming to the Marshall area for families to utilize.”

Jay O’Neill, co-owner and president of Behavioral Dimensions, is equally enthusiastic about the expansion.

“Twenty years ago, our company was coming to Marshall consulting,” O’Neill said. “We worked with Dianne — we taught her a specific way of teaching kids with autism. She was using some of our curriculum and very specific teaching techniques.”

O’Neill said the company was not involved in the Marshall area for the past 10-15 years.

“We’ve been developing in the Twin Cities and elsewhere,” he said. “Autism is pretty much all our company does. We have a commitment to provide to the rural parts of Minnesota, which is one of the reasons we want to come to Marshall. There’s a really, really big need for services. There are no providers in the southwest part of Minnesota who are doing the intensive interventions that we do.”

Will’s journey

Brigger said she and Will’s dad, Steve Brigger, started noticing some “atypical language development” when Will was between 12-15 months old. After Birth to 3 educators did an evaluation, he started to receive speech and occupational therapy services in their home.

“We lived in Wisconsin at the time,” she said. “He just wasn’t making the progress. When we had play groups and stuff, he wasn’t developing like his peers. Then he started to withdraw a lot more with the eye contact and there was a lack of language.”

Will was diagnosed with autism by a developmental neuropsychologist shortly before his third birthday. According to the Center for Disease Control and Prevention, autism is estimated to occur in as many as 1 in 68 individuals.

“Autism is 5 times more prevalent in boys than in girls and knows no racial, ethnic or social boundaries,” Beckendorf said. “Family income, life-style and educational levels do not affect the chance of a child having autism. Autism is a spectrum disorder — characteristics and level of support needed are unique to everyone with autism.”

Brigger, a first-grade teacher at Park Side Elementary, said screenings have gotten better over time, as has knowledge about autism.

“Will was diagnosed when autism was just hitting the headlines, so there’s been lots of changes in research,” she said. “We’re always keeping on top of things. There’s still no cause and no cure, but you hope one day there will be.”

As Will’s needs have grown, so has his resources. The family paid out-of-pocket when they lived in Wisconsin — something that can financially devastate families — but feels fortunate that insurance now helps cover a lot of costs, as does Medicaid.

“Generally for autism, a kid needs OT, speech, social skills — they don’t just need one thing,” Brigger said. “Will would go to school all day and then afterward, he’s have speech and OT and some recreational skills. He worked long days.”

Access to quality care has been a struggle at times.

“Our U of M doctor that Will had seen for almost 5 years moved out of state and now we don’t have one,” Brigger said. “I’m on waiting lists to even get in. That was who manages his autism part and his meds. Our primary isn’t comfortable doing that, which is understandable. But it’s worrisome for us.”

At 13, there are also a lot of physical changes ahead for Will.

“As his needs grow, then we always have to figure out what’s our next step with him,” Brigger said.

Along with school and OT through Big Stone, there is also habilitative services, which is his 1-to-1 staffing after school and in the summer.

“It used to be in the home, but now that he’s bigger, he does that in the community because our goal is to get him to be as independent as he can be. But he will need supports throughout his life.”

Brigger said Will is with his seventh-grade classmates for most of the day. He loves school and the structure is good for him, she said.

“He has a full-time para and he does work in special education for reading and math,” she said. “He does some career ready skills as well. His paras have been wonderful and the special education teachers, I feel, we’ve been a team — there’s good communication between us. Part of my job as his mom is to make sure everyone is on the same page. We’re all working together to help him, and he’s made some good gains.”

Will has a younger brother, Jack, who is 11. While they’re close, their friend groups are much different.

“In the younger grades, (Will’s classmates) really didn’t see a difference,” Brigger said. “But now at this age, their peer groups are so important, and socially, Will doesn’t really have a peer group. He doesn’t have a friend he hangs out with. It’s more adult-led or the people he works with.”

On the flip side, Brigger said it’s nice that her son doesn’t seem to care about anything materialistic or deemed popular.

“We probably won’t see much peer pressure,” she said.

When asked what his favorite class is, Will said, “Art.” He also enjoys a variety of activities.

“Will does bowling and this is the first year he competed in the Special Olympics,” Brigger said. “That was a big deal for him. We try to do lifelong sports. He swims a lot and I bought him an adult trike, so he’s learning how to ride that better. We’ve also done horseback riding.”

Habilitative Services, Inc. (HSI) is also a big part of their lives. Brigger said HSI is always teaching Will new games to play.

“They’re part of our family,” she said. “They’re in my home every single day. We have amazing staff. And they love him dearly.”

Like all students, Will has strengths and weaknesses. Brigger said her son is a really strong visual learner and he scripts, or repeats stuff, so he remembers a lot of jingles to movies or commercials.

“Concrete things are easy for him to learn,” Brigger said. “He has a good memory. He can pay attention to detail, but abstract things are really hard for him. He’s very literal.”