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Joplin, Mo. —
While much of the attention directed toward autism is centered on children the condition is pervasive.
“There are adults with Asperger’s too,” said Kathleen Vanderhoofven, consumer member of the Missouri Autism Advisory Committee. “Kids grow up, they become adults. It doesn’t just disappear. Most publicity and services are geared toward kids.”
Vanderhoofven was diagnosed with Asperger’s Snyndrome in 1997 at age 34. While autism spectrum disorder is a neurobiological condition not a mental illness, the diagnosis was added to the Diagnostic and Statistical Manual of Mental Disorders in 1994.
For years, neither Kathleen nor her doctors could quite put a finger on why social interaction was so hard for her.
“If you know that there’s something wrong but you don’t have a name for it then you feel like, ‘Well, I must be a pretty incompetent person or autism something. I can’t handle things the way other people can,’” Vanderhoofven said.
She had few friends as a child. Although she made good grades, she was picked on and ignored. She started having problems with depression in her teens because of her lack of social contact.
After her son’s birth, she was struggling with depression and other health issues, and while doing some research online she stumbled across some information about autism. The autism description was much more accurate than doctor’s efforts to find a personality disorder that fit. She posted to the group’s message board – autism sounded like her problem only she could talk. Group members told her about Asperger’s and that was the first time she had ever heard of it. Everything she threw out at them fit the picture.
“Everything that I said other people said, ‘Yeah, me too.’” Vanderhoofven said. “And I said ‘Wow, there’s other people like me I’m not like the only person in the world like this’ because I had pretty much convinced myself I’m the only person in the world like me.”
She had to tell her doctor about Asperger’s, but assumes they researched her claims because it ended up in her report. She linked up with Judevine, now TouchPoint, and someone there arranged to have her meet with Australian Asperger’s expert Dr. Tony Attwood during a nearby conference and he confirmed the diagnosis.
Vanderhoofven has two children. Her daughter shows no signs of autism, but her son was diagnosed with pervasive developmental disorder, not otherwise specified, PDD-NOS.
While much of the attention directed toward autism is centered on children the condition is pervasive.
“There are adults with Asperger’s too,” said Kathleen Vanderhoofven, consumer member of the Missouri Autism Advisory Committee. “Kids grow up, they become adults. It doesn’t just disappear. Most publicity and services are geared toward kids.”
Vanderhoofven was diagnosed with Asperger’s Snyndrome in 1997 at age 34. While autism spectrum disorder is a neurobiological condition not a mental illness, the diagnosis was added to the Diagnostic and Statistical Manual of Mental Disorders in 1994.
For years, neither Kathleen nor her doctors could quite put a finger on why social interaction was so hard for her.
“If you know that there’s something wrong but you don’t have a name for it then you feel like, ‘Well, I must be a pretty incompetent person or autism something. I can’t handle things the way other people can,’” Vanderhoofven said.
She had few friends as a child. Although she made good grades, she was picked on and ignored. She started having problems with depression in her teens because of her lack of social contact.
After her son’s birth, she was struggling with depression and other health issues, and while doing some research online she stumbled across some information about autism. The autism description was much more accurate than doctor’s efforts to find a personality disorder that fit. She posted to the group’s message board – autism sounded like her problem only she could talk. Group members told her about Asperger’s and that was the first time she had ever heard of it. Everything she threw out at them fit the picture.
“Everything that I said other people said, ‘Yeah, me too.’” Vanderhoofven said. “And I said ‘Wow, there’s other people like me I’m not like the only person in the world like this’ because I had pretty much convinced myself I’m the only person in the world like me.”
She had to tell her doctor about Asperger’s, but assumes they researched her claims because it ended up in her report. She linked up with Judevine, now TouchPoint, and someone there arranged to have her meet with Australian Asperger’s expert Dr. Tony Attwood during a nearby conference and he confirmed the diagnosis.
Vanderhoofven has two children. Her daughter shows no signs of autism, but her son was diagnosed with pervasive developmental disorder, not otherwise specified, PDD-NOS.
“For me when he was little I understood him really, really well. It wasn’t a problem for me until he got older,” she said. “And then I’m seeing some problems that I have no idea how to help him with.”
Verbal communication was a challenge until he was about 4 ½, but Kathleen always felt she understood him.
“It was actually not a problem at all for me to have a son who is also on the autism spectrum because I just knew what was going on,” she said.
He shares some of her social weaknesses, problems that she still doesn’t quite know how to fix and it’s hard, she said, to teach somebody something that you don’t have down yourself.
Making and keeping friends has been difficult for Vanderhoofven for as long as she can remember. Her difficulty in reading others’ social signs doesn’t mean that she does not want to socialize.
“I’m pretty lucky that I have been able to find some friends who don’t mind that I’m kind of quirky,” she said. “Several years ago I felt like I didn’t have any friends at all and that’s not good.”
She is good at paying bills on schedule, but eating and sleeping on schedule are hard for her. She wishes there was some way for her to connect to the rest of the world and to find a job where she would fit in. Although she holds a bachelor’s of science in biology and wanted to be in medicine, an illness after her son’s birth changed her plans. Later she decided to try an EMT class and did well with the tests and terminology, but mental checklists did not translate into action when the class moved to the hands-on part.
“When it came time to do the practical exam, I couldn’t do it,” she said. “That was actually working with people in a practice situation and stuff and I’m like, I have no idea how to do this.”
Local support does exist for adults and teens with autism. A support group, sponsored by the Global and Regional Asperger Syndrome Partnership and aimed at adults, meets monthly in Joplin. Freeman Health System hosts a monthly meeting attended by parents and adults. Both meetings, Vanderhoofven said, help her know that she is not alone.
