ZELIENOPLE — When Mary Limbacher's son was found to have Asperger's syndrome when he was in the fifth grade, the confirmation came after three years of misdiagnosises, rounds to different specialists and endless questions without answers.
Andy Limbacher is an adult now, taking classes for a mechanical engineering degree at Butler County Community College and holding down a part-time job, but Mary Limbacher said, “I will never forget how lonely and desperate I felt for my son and for me, too.”
To spare other parents that despair, Limbacher opened Parents in Toto, an autism resource center, at 143 S. Main St. in January 2008.
Limbacher, who serves as the center's executive director, said Parents in Toto functions as a drop-in center and information clearinghouse. It's a place where both children with autism and their parents and siblings can find a haven without judgment or prejudice.
Limbacher said Parents in Toto hosts monthly speakers, workshops on topics such as nutrition and estate planning and offers support groups for parents, siblings and the entire families of children affected by autism. The center even has a “serenity room” in the back, where mirror balls and an illuminated bubble column can calm overwrought young nerves.
“One of the things is the tremendous fact of having a center that is unlike any other organization. I did not pattern Parents in Toto to replicate anything that is being done. I want us to be the opposite,” she said, adding the center also offers a martial arts class and soon will offer an acting class.
“My satisfaction comes from providing families and individuals with uncharted activities to fill the void,” she said.
Colleen Hepler of Cranberry Township, the mother of a 12-year-old boy with Asperger's, has been coming to the center with or without her child once or twice a week for the past four years.
“It gave Alex a place. He thought he was alone. I promised him there were other children like him,” said Hepler. “The center was a place he could go. There is no judgment. The center has networked me with other moms to find where the doctors are, where the resources are.”
Parents with autistic children face extra difficulties because of the mystery surrounding the condition, Limbacher said.
Autism is a biological and neurological condition, said Limbacher. “The brain is not helping itself out. What typically a brain processes with high speed happens more slowly with an individual with autism,” she said.
Those with autism can have relatively mild conditions such as Asperger's to more severe forms.
Hepler said, “The autism spectrum is like a rainbow, inclusive of all colors, all the disabilities that range from mild to severe. Some children would have a few of the symptoms and degree of the symptoms, others more.”
“I compare it to a banana bread recipe. Everybody has a recipe for banana bread,” said Limbacher. “One might use a cup of bananas, another might say three bananas, but it still comes out banana bread.”
“To me, these various ingredients match up with the coexisting conditions that most individuals with autism experience,” Limbacher said.
These conditions include: sensory integration disorder; obsessive-compulsive disorder; anxiety; depression; and oppositional defiance disorder.
“Everyone with autism has these ingredients in some amount which affects how they see the world and how they function in the world,” said Limbacher.
“And how they're seen by the world,” said Hepler.
Every case is different, Limbacher said. “The old saying goes, “If you meet one person with autism, you've met one person with autism.'”
Limbacher's son was diagnosed with Asperger's syndrome 12 years ago.
It is characterized by difficulties in social settings, restrictive patterns of behavior and interests, but linguistic and cognitive development is relatively unaffected, Limbacher said.
“I've had people angry at me in support groups because they say at least my son talks,” said Limbacher. “Often his condition is mistaken for rudeness or mental retardation.”
Limbacher said the fact that her son Andy was tested as “intellectually gifted” in the first grade might have contributed to his Asperger's diagnosis being delayed. “Educators didn't think two extremes could exist in the same person,” said Limbacher.
Limbacher said it's estimated that one in 88 children have some form of autism. Her mailing list has 700 families and educators in Butler, Beaver, Lawerence, Mercer and Allegheny counties.
Parents in Toto is funded by donations, fundraisers, community businesses and grants. Limbacher said that in October she was able to begin paying herself a small salary. She had already hired Karen Grassell in September 2010 to be a part-time office manager.
“The difference this makes to families struggling with autism is astounding,” said Grassell of the center.
Grassell said she was visiting the center when a distraught woman arrived.
“Mary was here for that person and that touched me so deeply. I left my corporate job. It made that much of an impact for me that I had to change my life to help this woman,” said Grassell.
Grassell's background working in an actuarial position with an insurance company might help Parents in Toto secure more grants in the future, Limbacher said.