A different view of the world
Facing Autism hosts awareness event at Dodger Stadium
About three years ago, Allison Drew’s son, Elliot, was diagnosed with autism at age 4.
Then in July 2020, her daughter, Avelyn, 4, was diagnosed with the same developmental disorder.
Autism impacts a person’s ability to communicate with others. It affects 1 in 54 children, according to the Centers for Disease Control and Prevention.
One of the ways Drew is moving forward is through a nonprofit organization called Facing Autism, Inc. The group formed in 2018. Its co-directors are Drew and Janel Lincoln, both of Fort Dodge.
“We are a group of parents that came together and wanted to improve the lives of our children and other children with special needs,” Lincoln said.
“I learned about the group and joined,” Drew said. “One of the ways I coped with the diagnosis was to jump in and learn.”
On Saturday at Dodger Stadium, Facing Autism hosted an awareness walk. About 50 people attended.
Drew said the organization has been a healthy way to examine the challenges of autism while bringing awareness to the disorder.
“It’s been a positive way to deal with the news of a diagnosis,” she said. “But also a way to educate others.”
Drew said there are different levels of autism. And the disorder can affect each person differently.
Her son, for example, doesn’t require as much support as her daughter.
“He’s very intelligent and independent,” Drew said. “She struggles with communication and has certain sensory issues. They don’t like big crowds.”
Despite a unique set of challenges in raising her children, Drew said they have impacted her life positively.
“Autism definitely has its challenges and difficulties, but it’s been a good journey for me as a mom,” Drew said. “I’ve learned a lot from my kids on how to view the world differently. It’s not as devastating as people think. It’s been an honor to raise them and learn from them.”
Lincoln’s son, Dylan, 15, lives with autism.
When Dylan was 2, he wasn’t talking and experienced some delays in areas like walking, she said.
He was eventually diagnosed through the school system.
Since that time, Lincoln has taken him to different specialists who provide a range of therapies, interventions and techniques.
“Speech therapy is huge,” Lincoln said. “Occupational therapy, physical therapy.”
Dylan uses what’s called a DynaVox to help him communicate.
“I can best compare it to an iPad with a communication app,” Lincoln said. “He also uses sign language. The biggest challenge is understanding him and what he needs and what he wants.”
She said he uses a small amount of words.
“If he has a stomachache, he can use that machine to tell us he has a stomachache,” Lincoln said. “He uses sign language. He kind of made up his own. People closest to him understand it. But you can’t take a sign language class and know what he’s doing. They are ones he’s developed. That’s the part that is hard for me to explain to people. Dylan is nonverbal and doesn’t talk. And you’ll meet another child who can talk quite well. Some might be more affected by certain things than others.”
Lincoln, who also works with other families who have special needs, said getting her son the services he needs has been a huge challenge.
“That was a challenge and still is,” she said. “We have a lack of services in our area and it can be very frustrating. There’s improvements and I know different agencies are working on it. But as a parent you want to make change happen instead of waiting around for someone to save you.”
Lincoln said Applied Behavior Analysis is one key service missing in Fort Dodge.
“In Iowa it is very difficult to access this therapy,” she said. “The others we have closer to home. You can get speech, occupational, some kids do feeding. You can get those, but ABA is very difficult to do.”
She said the closest providers of ABA are in Ames, Waterloo and Mason City.
“We do have one agency, Developmental Wellness, that has served the Fort Dodge area, but it’s kind of a private agency,” Lincoln said. “I haven’t personally used them. There are limited agencies that provide it here and part of it is the cost.”
One Vision, a nonprofit organization that provides employment support for individuals with disabilities and other needs, at one point had plans to open a children’s autism center. That center would offer ABA, Lincoln said.
Lincoln hopes to bring a greater level of understanding to the community through Facing Autism.
“I think understanding that autism is lifelong and that there’s a spectrum,” she said. “We have kids that are very mildly affected and go into a regular classroom. They don’t grow out of the symptoms, but learn to manage them better. Others need more support. It’s hard to be different, and this just gives us a platform to educate people.”