In their own distinct ways, Kelly Long and Heather Zimmerman are seeking to understand what Long’s daughter Grace is living through. For her part, Grace Long is very much in tune with her life with a disorder.
The common denominator is autism—Grace Long has it and Zimmerman and Kelly Long want to know as much as they can about it. But while Zimmerman’s pursuit is much more analytical in nature, Kelly Long’s originates from the emotional place we call “the heart.”
Yet no matter how one perceives it, knowledge and understanding and empathy are the keys. For if we all knew more about autism, the world in which those afflicted with it—like Grace Long’s—would be a much better place.
“My hope for her is that she has peace within herself,” said Kelly Long of her daughter. “I hope she can acknowledge when something doesn’t give her joy and find a way to joy. I think the things I’m hoping for Grace are the same things all parents want for their children. You want your child to be able to survive in a world where they don’t necessarily fit.”
In earlier times, when children had developmental disorders, people would hide them away, Zimmerman said.
“People have learned more about autism, which brings it into the light,” she said. “It seems more common now, but I think people are just learning more about it. But unless you’ve had firsthand experiences with it, it’s difficult to understand.”
Zimmerman, Kelly Long and Grace Long are three motivated women at different stages of their lives, but all with strong voices. Their stories became intertwined during a chance meeting at the Hershey Pantry, where Zimmerman was working as a server and where Kelly Long was a customer.
A 36-year-old resident of Hummelstown, Zimmerman is currently attending the National University of California, where she is virtually pursuing a degree in applied behavioral analysis. Kelly Long, a 53-year-old novelist, is the mother of two grown autistic children who recently moved from the Hershey area to Lykens.
Grace, a recent graduate of Hershey High School, aspires to attend culinary school, and maybe, someday, medical school.
“I don’t want to say it was difficult growing up, as much as it was different,” Grace said. “But I don’t know how to live any other way. A lot of things that bother me don’t bother other people. It’s a lot of slowing down, and that makes it frustrating.”
Kelly Long described autism as “a gift.”
“I don’t wish that there was a cure,” she said. “I wouldn’t want my children to be anyone else than who they are. An autistic person sees the world differently than you and I do. Kids with autism are frequently non-verbal at a young age. But just because they’re not speaking English doesn’t mean they’re not speaking.”
Talk About It
Clinically speaking, autism is a developmental disorder characterized by restricted and repetitive behavior, as well as difficulties with communication and social interaction.
It’s estimated that about one in 60 children in the United States has autism, and boys are four times more likely to be diagnosed with the disorder than girls. Throughout the world, autism is believed to affect nearly 25 million people.
About half of the people in their 20s with autism are not employed.
“Everybody is different. Some people with autism need to have a routine,” Zimmerman said. “I’m really interested in it, because it’s a very predominant problem. It takes a lot of patience. I think it’s a very needed thing. I want to learn as much as I can about it.”
Grace Long was diagnosed with autism at the age of 10, years after her older brother had been diagnosed with it.
“I knew my brother had autism,” Grace said. “But it was kind of a shock to figure out I had it, too. When I first found out, I was in a bad place mental health-wise, so it was nice to have an answer.”
It has presented its share of challenges.
“It has made reaching goals, accomplishing things and learning difficult,” Grace said. “It makes it difficult to go to school. It makes it hard to go into crowded places because of the loud sounds. It makes it hard to stick to certain goals and times.”
Sometimes, people don’t see the potential in people with autism, Kelly said.
“I still think there’s a negative connotation associated with autism,” she said. “We don’t understand it, so we’re afraid of it. Kind of like, ‘Oh yeah, that’s nice, but I don’t want to be anywhere near you.’ If you learn, that fear lessens. I think it’s important to see people as people.”
Some studies have suggested that the rate of people with autism worldwide is increasing. Others contend that the methods for diagnosing have simply improved.
“When you go out in public and see someone different than you, sometimes you make a snap judgment,” said Zimmerman. “It’s 100-percent important for people with autism to function and have somewhat of a normal life. I think people know more about autism than they ever have, but unless you know someone who’s been diagnosed, you really don’t know. It’s most important to take the time out and understand what it is. These kids need help.”
In recent years, the understanding of mental health and autism has gone up, Grace said.
“But there is so much more to learn,” she added. “I think the general public has a very specific picture of what autism is. People with autism have trouble socially interacting with other people. It’s something that’s hard to pin down for other people. Your entire mind functions differently. It’s not really well-talked about.”
Grace Long hopes to start a conversation about it.
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