Kathi Pierce noticed almost from birth that her son Wesley was having some problems when he had trouble breast-feeding.
It took years of trying various medical exams before Wesley was diagnosed with low-functioning autism.
Now Pierce worries about changes being considered to the definitions and diagnostic criteria of autism and other spectrum disorders.
Those proposed changes could have large ramifications for local families, said Joshua Diehl, the University of Notre Dame psychology professor who eventually told Pierce with certainty that Wesley had autism.
"We've seen it coming since a couple of years back," Diehl said of the changes. "We began to see it as more research came out about the autism spectrum."
The proposed changes from the American Psychiatric Association (APA) are to the various disorders lumped under the "autism" umbrella, most well-known being Asperger's disorder and Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS). The changes would eliminate separate terms and lump all diagnoses under the term "autism spectrum disorder."
The proposed changes would also create a new category, "social communication disorder," which would cover those who don't exactly fit symptoms of autism, but still have trouble communicating and interacting with others.
Some experts believe up to 40 percent of those currently considered autistic will be affected and might lose their diagnoses, which could affect insurance coverage and other services, according to The Associated Press.
Diehl said many of those diagnosed with specific types of autism would lose specialized services and environments they depend on.
"A lot of people embraced the Asperger's diagnosis culture," Diehl said. "They came out of it as bigger than the diagnosis itself. Autism carries a little more of a stigma with it -- Asperger's is a less stigmatizing diagnosis."
Another potential problem with the proposed changes is the damage they could do to the reputation of the psychology field as a whole, according to Diehl.
"In some ways, there is a danger to undermining the psychology profession," he said. "A lot of families have been struggling for years to find a diagnosis."
Understandably, the definitions needed to be upgraded, according to Diehl.
"The idea is that we created the autism spectrum, and we have a catch-all category (PDD-NOS) that wasn't exactly autism," he said. "Too many people were put in there -- it sort of became autism.
"The definition is too vague. The purpose of these updates is to give more defined ideas, make them more easy to use."
These changes arrive as information released from the U.S. government reveals more children than ever -- one in 88 -- are being diagnosed with autism.
Diehl said he would like to talk to parents of children with autism.
"These are good changes," he said. "But we just need to talk about it, and to get a discussion started. The scary thing is that people don't know if they will be affected. I do think there will be some people affected."
Pierce said the changes maker her nervous.