Looking into what autism is like in Athens Ohio.
Noriko Kantake, an Athens resident, can recall many struggles associated with having a child with autism. She said mainly these stem from people not understanding the situation.
She said her son not being invited to birthday parties is a “default,” that he had been denied from going on a field trip, and a school called a mental hospital without her knowledge.
“I have been through so many struggles it is hard to name a single incident,” Kantake said in an email. “But it is important to note that those who gave me these struggles, are not mean; they simply don't have resources. I work with them to improve services (so) that other families don't have to experience what I did.”
Kellie Vaughan, a senior studying speech language pathology and vice president for OU’s Autism Speaks chapter, said many people know autism but most are unaware of the effects of autism or how it affects people.
About 1.5 percent of children in the U.S. are diagnosed with autism spectrum disorder, according to the Centers for Disease Control and Prevention, and the numbers keep growing.
April is the month set aside for people to learn about autism spectrum disorder. However, many Athens organizations and individuals aim to educate people about autism all year long.
What is autism
The definition of autism spectrum disorder is a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people, using language and understanding abstract concepts, according to Autism Speaks, the world's leading autism science and advocacy organization.
John McCarthy, an associate professor in the School of Rehabilitation and Communication Sciences, said in an email autism is a spectrum disorder, meaning there is a wide range of ability and disability. He added ASD can co-occur with other disorders, or not.
According to the CDC website, ASD commonly co-occurs with other developmental, psychiatric, neurologic, chromosomal and genetic diagnoses. The co-occurrence of one or more non-ASD developmental diagnoses is 83 percent. The co-occurrence of one or more psychiatric diagnoses is 10 percent.
Doctors and researchers still can’t pinpoint why a person gets autism. There are many myths, such as vaccines, but Sarah Taylor, a communication science and disorders professor, said ASD is so wide-ranging in its effects, it’s not going to be easy to determine a cause.
“I think it’s because autism is a bigger issue than people originally thought and that’s the common thought now is there is more than one reason,” she said. “There’s genetics involved and so there may be other reasons we just don’t know, so in terms of trying to find a cure it’s a group of reasons. We can’t just say ‘okay I’m going to find one reason or one way’ — it’s just too big.”
Vaughan said one of the reasons why she’s interested in working with kids who have autism is learning about ASD and wanting to know the cause.
“We want to debunk the myths out there,” Vaughan said. “Part of it for me is just making other people aware of autism and how to work with people who have autism, because there’s so many students out there who have autism even at OU. People might think ‘oh they're weird’ … but they just don’t know how to approach them or how it affects them socially.”
Autism is diagnosed by a diagnostic team that does multiple tests.
On average, children identified with ASD were not diagnosed until after age 4, even though children can be diagnosed as early as, age 2, according to the CDC. Also, ASD is five times more common among boys than in girls, according to CDC's Autism and Developmental Disabilities Monitoring Network.
This academic year, .9 percent of OU students registered with students accessibility services have autism according to information provided by Carey Busch the assistant dean of student accessibility at OU. That means about 10 students with autism have registered to receive university assistance, but there could be many more students with autism who have not registered.
Athens has a team to diagnose autism locally, called the Interdisciplinary Assessment Team. It’s made up of specialists from Nationwide Children’s Hospital, the Heritage College of Osteopathic Medicine and the OU Hearing speech Language Clinic.
For the past 20 years, the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders had five components to autism. In the new DSM V, which came out in 2013, it eliminated Asperger’s Syndrome as a diagnosis associated with autism.
“It’s just that they’re changing the way they classify,” Taylor said. “If somebody said ‘okay I’m just going to change labels’ what would that do to your friendship? Or how they study? Or what they like? So yes, it’s huge implications at a big level, (and) on a personal level it’s still what’s most important for that person.”
Living with Autism
Living with a loved one who has autism is “wonderful, stressful and crazy,” said Charla Gretz, an Athens resident and mother of two children with autism.
Since autism has no physical characteristics, oftentimes when Gretz goes to the local grocery store with her daughter, Shayanna, she hears noticeable whispers toward her daughter having a service dog, an important resource to help deal with her autism.
“We had one family follow us around Walmart and you could hear them talking amongst themselves, and they followed us all over Walmart,” said Gretz. “Finally, Shayanna just stops, turns around and looks at them and said ‘if you must know I have autism and I have epilepsy and Spring helps me okay?’ "
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Shayanna, who is 8 years old, was diagnosed with autism in 2009 and also has epilepsy. Spring is Shayanna’s service dog trained in search and rescue, and behavior disruption.
“Its amazing what Spring has been able to do for Shayanna,” Gretz said. “Because of Spring she’s like ‘I can open up and I can do this’ and she’s made friends at her new school and she’s adjusted very well to her new school because Spring has been there.”
Spring goes to East Elementary every day with Shayanna. Shayanna used to attend the Beacon School, a local resource for 3- to 21-year-olds with developmental disabilities, and is currently attending East Elementary and is doing well in in school with an Individualized Education Program.
“It’s frustrating because everyday you pretty much live on a schedule in order to avoid chaos or a meltdown … (if) you prepare for it right, it can be a great experience,” Gretz said. “Little things can be big things in their eyes.”
Gretz said she and her husband do get the occasional look from people when their children have a “meltdown.”
Gretz said during one incidence at Dollar General a man threatened to kick her and her husband's butt as he shouted “You’re the most horrible parent ever” because her son was kicking and screaming because he did not get a toy.
“There’s so many other options, don’t just scream at me while my sons already kicking and screaming at me,” Gretz said. “People just assume that it’s the parents. … It’s very difficult when people just judge you.”
Gretz's son, Connor, who is 6 years old, is also in the process of being diagnosed with ASD.
Vaughan worked at Camp Cheerful, a camp for children with developmental disabilities in Cleveland, this past summer and had an emotional interaction with one girl in particular.
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“I felt sick and I was laying my head on (the table) and this little girl — she was 5 or 10 and she had severe autism — she was nonverbal and I was laying on (the table) and she came up to me, patted me and started hugging me,” Vaughan said. “I thought that was so cool because even though she has autism she can still see how I’m feeling sick and she tried to comfort me.”
Vaughan is going back to the camp this summer and is hoping to work one-on-one with that girl.
Caylie Cabrera, a freshman studying psychology, has two brothers with autism, and was an interpreter for her brother who is two years younger than she is, who had a severe speech impediment.
“We always shared a really special bond because I was the only one that could understand him, so anyone he would talk to, we were always together because people would be like, ‘I don’t understand what he’s saying,’” Cabrera said.
She said being his interpreter made them really close because he relied on her.
Autism in Athens
Besides the diagnostic team in town, there are many other resources for individuals with autism and their families in Athens.
Kantake started the Appalachian Family Center for Autism and Disability Resources and Education, an organization to connect people to autism resources in the area.
AF-CADRE runs a public Facebook page with 100 members and then another exclusive Facebook page for parents that has 54 members. The Facebook pages are designed for members to share resources.
Kantake said in an email, almost everyone whom she’s shared resources with are very nice and thank her, but even if they don’t thank her she’s still happy to help them.
“When I became an advocate, I learned a lot about the complicated support systems for families struggling with developmental disabilities,” Kantake said in an email. “(That) information should be available to all families without being connected to many professionals. I wanted to empower parents by sharing the resources.”
AF-CADRE has a fundraiser through Kroger called the Kroger Community rewards program. Kantake said in an email the fundraiser raises about $80 a year and most of the funds, along with other funds raised, are used to pay for Summer Fun for Special Kids, which is a camp for children with developmental disabilities.
Maryalice Turner, the Beacon School principal, said the school has a high number of students with autism.
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The school has a very consistent routine, which is important for kids who have ASD, and the school also uses communication devices for those students who are nonverbal such as iPads. These devices allow individuals who are nonverbal to still express their thoughts and needs.
“They can say ‘I want eggs for breakfast.’ All of our kids eat breakfast and lunch here so they get (to choose),” Turner said. “And for those (who are non-verbal) we want to make sure they can communicate either with the iPad or with something called Pecs.”
Pecs are little pictures of items or words that students can place in an order to communicate with their teachers or parents. However, the school likes using the iPads because it feels ‘less awkward’ than Pecs because “everyone has an iPad.”
“We have children here that kick, bite, scratch, spit right in your face and (teachers say) ‘no we don’t do that’ and redirect and it’s calm and it’s respectful,” Turner said. “(The teachers here) understand that these kids cannot help what they’re doing.”
The school has two sensory rooms that Turner said are very effective for kids with autism who have sensory issues. Placing pressure on students with sensory issues can help comfort them. The school has weighted blankets, swings and a ball pit for this purpose.
“It helps them know where their body is,” Turner said. “With the physical issues of sensory need, they can’t figure out where they begin and end; they don’t have a sense of their body so when that’s pressed then they know where they are.”
Samantha Dunlap, who teaches students ages 15 to 21 at the Beacon School, said teaching students with autism is rewarding and challenging at the same time.
“Children with autism learn in a totally different way than their typical peers do. They’re much more visual and much more step-by-step,” she said. “I see myself having to break down the littlest things. … Just getting (a student with autism) eyes on the board is a step-by-step process and then leading (them) one step at a time. That’s what I noticed the difference between those kids with and kids without autism.”
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Dunlap said one of her favorite memories while working with students who have autism was teaching one of her seniors, who graduated last year, how to tell jokes. Dunlap said she and the student would have a joke of the day and they would practice the punch line and how to introduce it .
This is the first semester that OU officially has an Autism Speaks chapter, which includes about 40 official members.
“If we just get people involved and wanting to do something with autism, that’s great and if we’re going to make a little money off it that’s (also) great,” said Nicole Jackman, a junior studying special education and president for the Autism Speaks OU chapter. “But for us we focus more on the awareness part, that’s what we have fun doing.”
The Autism Speaks chapter at OU hosts fundraisers and gives the funds back to Autism Speaks for research purposes. OU’s Autism Speaks chapter will be involved with “Light It Up Blue Day,” on Thursday, a national event to help raise autism awareness by wearing blue or switching regular light bulbs with blue ones.
“We just kind of want to bring autism awareness to Athens … that’s what we work to do with OU in general because a lot of OU students are unaware of the effects of autism, or how autism affects people,” Vaughan said. “(The) numbers (of those being diagnosed with autism) are just growing and growing and there’s so many people who don’t know (about it) or are unaware of the effects of it.”
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