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Grant County observes Autism Awareness Month

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KID-FRIENDLY THERAPY:A wallpaper owl inside the Hopebridge Autism Therapy Center.
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LEARNING THROUGH PLAY: Registered Behavoral Technicians Malikah Moore, front, and Breann Donson help children paint at the Hopebridge Autism Therapy Center.
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UNIQUELY SKILLED: Anaiah, a student at the Hopebridge Marion Autism Therapy Center, located at 2513 W. Second St., creates a piece of artwork.

BY Emily Rachelle Russell - erussell@chronicle-tribune.com

April is Autism Month, often called Autism Awareness Month or Autism Acceptance Month. It’s a time of the year dedicated to educating the public on the experiences of people with autism spectrum disorder, or ASD.

“Autism is a difference in neurological structure that leads to processing the world in different ways than people with typical brains do,” according to Sarah Jones, associate professor of special education and exceptional needs education program coordinator at Indiana Wesleyan University.

The most important feature of ASD for people to remember, Jones said, is that autistic people are a diverse group with a wide range of abilities and challenges — which is where the term “spectrum” comes from. No two people on the spectrum are the same.

The spectrum also includes a form of autism which was formerly diagnosed as Asperger’s syndrome, named after Austrian pediatrician and eugenicist Hans Asperger.

“Life looks different for every single kid that comes through the door here,” said Jayson McCord, clinic manager at the Hopebridge Marion Autism Therapy Center.

Autistic people may have difficulty picking up typical social cues or making eye contact.

Some autistic people are nonverbal, meaning they communicate in ways that don’t include verbal speech, but not all are. Many nonverbal autistic children may grow up to acquire verbal communication skills, but not all do.

Facial expressions often don’t mean the same thing to autistic people that they mean to the rest of the world. An autistic person might have lowered eyebrows, usually interpreted by others as an expression of anger, without being angry.

Compassion and empathy are often expressed in very different ways by autistic people than non-autistic people, Jones said, which often leaves them misinterpreted. Those feelings are still deeply felt, whether they are recognized externally by others or not.

Sensory struggles, such as being physically or emotionally overwhelmed by loud noises, bright lights, specific tastes or certain food or fabric textures, affect many autistic people.

“The people in my family who have autism, they describe life as like operating in a world that was designed for a different operating system,” Jones said. “They are running iOS in a Windows world.”

To the autistic people in Jones’ life, it often seems like other people overlook details the autistic person finds very important while expecting the autistic person to know information they’ve never been given.

Life often needs more structure for autistic people than for people with typical brain structures. Changes in schedules or a lack of detailed planning can be very difficult for autistic people to handle.

Tasks and thought processes autistic people find uniquely easy are treated as “consolation prizes,” Jones explained, rather than recognized as valuable skills. She wants to see this change, and she hopes that society will adapt to better value the talent and perspectives autistic people bring to the table.

“We have designed society to expect and value the skills that we find in most people,” Jones said.

Ken Taylor is an assistant director of the Academic Enrichment Center and coordinator of academic support at Taylor University. He has worked with several autistic students who he sees fixate on a specific subject or problem.

Autistic students also often need outside guidance understanding the body language and social expectations of others. Taylor spoke to one student who put his arm around a girl on a couch and didn’t understand why she was upset at this behavior.

He also works with several autistic students who blurt things out in classrooms. These students learn to work with professors to share their perspectives without disrupting class.

Taylor and Jones both shared that autistic people are often highly skilled, intelligent people who use and develop their abilities differently than others expect.

Whether or not autism can or should be cured is a point of disagreement among organizations and individuals who work with autistic people.

“I’m not sure you can cure (autism),” Taylor said. “I think we can deal with it and teach social skills, verbal and written communication, things like that.”

McCord disagrees. He would love to see a cure for autism, but he said he isn’t sure what that would look like. Right now, interventions are the focus of medical treatment.

“I would rather see no autism in this world and lose my job,” McCord said. “I’m hopeful someday they can find a cure and find what causes autism. Until then … (we) help them function in society.”

Jones takes a position of promoting understanding rather than a cure. She shared that autistic people themselves are often opposed to the idea of curing autism and express frustration with what they call “cure culture.”

“They are perfectly happy with the way their brains work,” Jones said. “The way that autistic brains are structured comes with so many strengths, that to say that this structure is disordered just because it’s not like a typical structure really puts privilege on technicality, with no basis in objective recognition of human strength.”

She believes society needs to restructure expectations and make allowances for diversity in brain structures, just like society recognizes diversity in gender and race.

There is no scientific information or research that can say what causes autism, Jones added. The only thing science can say about the origins of autism with any certainty is that autism has no connection to vaccinations.

Autistic people themselves often reject the idea of a cause altogether. They accept their experience as a natural part of human diversity, Jones said.

Autistic people and their families and loved ones can find support through multiple avenues in Grant County.

On West Second Street in Marion, Hopebridge Marion Autism Therapy Center provides Applied Behavior Analysis (ABA), a method of therapy that works to change specific behaviors like social and communication skills.

While children need to have an official diagnosis of autism to access ABA, the center also offers occupational and physical therapy for children with or without a diagnosis. The center is working on establishing a speech therapy program as well.

One thing that makes the Hopebridge center unique is its 360 model, which is focused on providing all of an autistic child’s services in one location, including diagnosis. This saves parents and caretakers the frustrating, time-consuming process of coordinating multiple care providers.

Patients and families of any age can also find support with All Along the Spectrum, a local group working to become a recognized 501(c)3 nonprofit.

Founded by Angie Schleuter, All Along the Spectrum is run by a group of women with children or direct family members with autism or other special needs. The organization currently has a Facebook page and online support group.

An event last weekend helped the group raise enough money to start the process of becoming a nonprofit. According to President and CEO Ashley Lopez, the goal is to have a building and begin offering services within a year.

The nonprofit’s focus is on providing support and resources and helping patients and families find the treatment they need. Lopez explained that All Along the Spectrum wants to provide similar services for families with autistic individuals to what Cancer Services of Grant County provides for families facing cancer.

Of the many people and groups working with autistic people in Grant County, the one lesson they want to impart on the community is a message of patience, empathy and understanding.

“People with autism react to a stimulus or to a conversation differently than we would,” Jones said. “If we are willing to be explicit and be patient … we will be able to form much truer, much deeper relationships, because we need each other.”

Autistic people and their families can contact All Along the Spectrum through their Facebook page, by calling 765-603-2158 or by emailing allalongthespectrum@gmail.com. For more information on the Hopebridge Marion Autism Therapy Center, visit www.hopebridge.com/centers/marion-in.

General information and support for autism can also be found through the Autism Self Advocacy Network at autisticadvocacy.org.