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Midway-based AuSM works to improve lives in Minnesota

Posted on 09 April 2018 by Calvin

Autism Society of Minnesota offers education, support groups, events, convention, and more

Under the helm of a new director, the Autism Society of Minnesota (AuSM) is working to improve the lives of those on the spectrum and educate those around them.

Based at 2380 Wycliff St., AuSM was started by parents as a grassroots organization in 1971. The initial goals were to make sure their kids were understood and recognized in school and all facets of the community.

Today, that’s expanded to represent a broad spectrum and a wide age range. In addition to providing education to parents, AuSM is also committed to connecting people to strategize about autism. Classes are offered for parents, teachers, emergency responders, doctors, business owners, community members and more. Last year, 2,200 people were trained by AuSM.

“We have a very broad and rich diversion of services,” stated AuSM Executive Director Ellie Wilson (photo right provided). “We want to be there for families, but we also want to be out there changing the landscape.”

“It’s a great organization and why I’m trying to give back as a board member,” stated Paul D’Arco, who has a son with autism.

Why work in this field?
Thirteen years ago, Wilson worked as a camp counselor at Camp Knutson in Cross Lake, MN. When the camp for kids with autism began, “it was a like a light bulb went off,” recalled Wilson. “Everything has been about autism since that day.”

She has considered going to medical school like her parents but changed her career plans to focus on autism, disabilities, and public health, learning everything she could about this disorder. As the pieces began to fit together, she realized her place belonged in advocacy work so that she could focus on the big picture.

Wilson was hired as the Executive Director of the Autism Society of Minnesota in October 2017.

“It’s been an incredible privilege for me,” she said.

What is autism anyway?
“Autism is what we call a developmental disability,” observed Wilson. “You have it from the time you are born, and it affects how your brain develops.”
She added, “All of us develop a little differently anyway. What seems to happen with autism is that development has even more variation.”

Differences show up in how people process information and what their perceptions are.

“Because of these differences, we see differences in behavior, specifically how people contribute and how they interact socially,” said Wilson.

Photo left: Over 1,000 people attended the Steps of Hope for Autism in Minnesota 2018 fundraising walk held at Southdale Center in March 2018. The free event is also a resource fair. (Photo submitted)

April is National Autism Month. Autism is estimated to occur in as many as 1 in 68 individuals, according to the Center for Disease Control and Prevention.

Autism is five times more prevalent in boys than in girls and knows no racial, ethnic, or social boundaries. Family income, lifestyle, and educational levels do not affect the chance of a child having autism.

Autism is a “spectrum disorder,” which means that characteristics and level of support needed are unique to each autistic individual.

While more boys than girls are diagnosed with autism, that doesn’t necessarily mean that fewer girls are affected, observed Wilson. In fact, it could be that girls are exhibiting the same signs, but because of what society expects girls to be (more shy, for example), it doesn’t send up the same flags as with little boys who are supposed to be boisterous.

“Cultural biases are affecting the pattern,” said Wilson.

One of the oldest myths out there about autism is that people on the spectrum aren’t interested in social interactions and prefer isolation, pointed out Wilson.
“I have never known anything to be less true,” stated Wilson. “It’s more like wanting to play a game, but not necessarily being able to understand the rules.”

She pointed out that the behavior of those who aren’t on the spectrum is dictated by social conventions that develop early. Children have a natural instinct to mimic others. Kids and adults on the autism spectrum can’t do that.

“Everyone I know with autism wants relationships, wants to be successful,” said Wilson. “But it’s like they’re not reading the same playbook sometimes.”

Another misconception about the disorder is that everybody needs to present the same way.

AuSM is working to promote more acceptance of the “neurodiversity” in people, or the idea that not everybody is the same.

“We all think and process in a different way. That’s ok,” said Wilson. “And often, that’s good.”

In some ways, autism can be an invisible disorder, pointed out D’Arco. His son has no real visible disability, so they’ve experienced some misunderstandings and negative comments by others.

D’Arco thinks that sometimes others don’t give his son the opportunity or stretch him to the extent he could go because of his autism.

“It’s really our job as parents, and his as he self-advocates, to give him opportunities,” stated D’Arco.

He hopes that other people focus more on what his son can do rather than his disability.

What sets AuSM apart?
AuSM works to support people with autism throughout their lifespan. Many get diagnosed these days when they are between 3-5 years old, and many programs focus on early intervention and support up through age 20. There are fewer programs available as a person with autism ages.

“Adults on the spectrum have existed forever, but we just haven’t paid attention until now,” observed Wilson.

However, sometimes they go undiagnosed, and their issues aren’t recognized by co-workers or families. “Employment issues are quite complex,” pointed out Wilson. Workers with autism have a lot of intellect, perspective, and skills valuable to employers, but because of social differences can find it hard to get and keep a job.
Among the AuSM programs offered are support groups for those with autism, as well as caregivers and parents.

AuSM provides a community for those on the spectrum. They organize a Dakota County Book Club, Monthly Birthday Celebration and Game Night, Skillshops Tailored for Adults on the Spectrum, and Art On the Town. Other sponsored activities include Minnesota Zoo Classes for Adults with Autism, Advanced Filmmaking with Film North, ComedySportz Improv excursions, On the Town Adventures, and more.

“We’re committed to being a good resource for people across the state,” observed Wilson.

Photo right: St. Paul Police Department members attend an autism training event led by AuSM in February 2018. (Photo submitted)

AuSM is not a traditional service provider and doesn’t focus on offering behavior or speech therapy. The organization does offer a small mental health department to facilitate things like support groups and to help people understand a diagnosis. But mostly AuSM helps connect folks to the many service providers in the state and isn’t attached to one provider. Because of that, when they receive a call, “we’re attuned to listening to individual needs,” said Wilson, and providing a recommendation based on those.

What does AuSM offer?
There’s so much on the website (ausm.org) that some find it hard to navigate. Wilson encourages people to look under the Who Are You tab to tailor information to their needs. Or, give the office a call 651-647-1083.

“We’re really a catch-all,” said Wilson.

AuSM hosts an annual walk, The Steps of Hope, on the first Sunday of each March. Over 1,000 people attended the indoor walk this past year. This free event is also a resource fair.

Their largest annual event is the Minnesota Autism Conference, now in its 23rd year. Set for Apr. 25-28, this year’s conference features four keynote speakers, 35 breakout sessions, exhibitors, and the AuSM Bookstore.

New this year is Julia’s AuSM Autism Celebration on Apr. 25, 3:30-5:30pm at the DoubleTree by Hilton Hotel Minneapolis Park Place. All families are invited to meet Julia, Sesame Street’s new character with autism, and to participate in lots of sensory-friendly activities offered by many organizations in the Twin Cities, including TPT, Walker Art Center, Children’s Theatre Company, Children’s Minnesota, and more.

This year, AuSM is offering nine sessions of summer camp at three different locations for students as young as seven and as old as 40. About 300 people experience camp sessions each summer. Some are overnight experiences while others are day camps.

In 1995, D’Arco’s son Tony was diagnosed with autism. One of the first things he and his wife did was attend the AuSM annual convention. “It was a tremendous first step in dealing with autism,” observed D’Arco.

Photo left: AuSM Board Vice President Paul D’Arco (second from left) with others at an AuSM event. He praises AuSM for the life-changing experiences the organization offered his family. D’Arco’s son, Tony, was diagnosed with autism at age three, and the first thing his and wife Sharon did was attend the AuSM annual convention. (Photo submitted)

When Tony was about eight, he began attending summer camp in Cross Lake and continued that until about age 19.

“For him, it was the opportunity to have the traditional camp experience that any typical kid would have,” said D’Arco. He enjoyed campfires, boating, swimming, fishing and more—learning social and practical skills. “He built some lifelong relationships,” D’Arco added.

“For Sharon and I, it was a vacation. When you have a kid with autism, it’s a full-time job. It’s difficult to have time for yourself.” The couple sometimes went away themselves and used the time to recharge.

D’Arco joined the AuSM board four years ago and is currently board vice president. He’s trying to give back to the organization that supported him and his family on their journey.

“They were life-changing experiences,” said D’Arco.

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