It's a diagnosis no parent wants, but if your child has autism, an official diagnosis is the only way to gain access to state-funded services. Proposed changes to the definition of autism would mean as many as 65 percent of children and adults currently on the autism spectrum would no longer meet the criteria. It's a change that has many parents and advocates worried.
Tracey Diamond fought to get her son T.J. diagnosed with autism.
"I went one place and the doctor said to me, 'you don't want him to have autism.' I said I don't have a choice. If he has autism, I need the diagnosis. We need to get services."
At just 24 months old, T.J. stopped talking.
"He would point to a star and say star. He would point to a light and say light, and then, everything stopped,” Tracey said.
It took another three years for T.J. to get an official diagnosis and the state-funded services for education, transportation, health, and other social services that come with it.
"It's going to be even harder now to fight for the ones who are borderline,” Tracey said.
Harder because the criteria that must be met to fall into the autism spectrum is about to change.
"One of the big changes is that those smaller categories will disappear," said Laura Silverman, a clinical psychologist at Golisano Children’s Hospital.
One in 110 children has an autism spectrum disorder. Some may be diagnosed with more severe forms of autism, while others have Asperger's syndrome or "pervasive developmental disorder;” a diagnosis that can change over time.
Silverman says the changes are designed to make things more clear.
“Rather than changing the name of what it is, there will be more of a focus on symptom severity, so how do they look over time, and I think that will be easier for parents to understand and for professionals to work with."
Silverman says the goal was not to increase or decrease the amount of people on the autism spectrum.
"There's always a possibility that you'll lose programs or you'll gain programs but I think that has more to do with the economic or political climate than with the change in diagnosis,” Silverman said.
When asked if she feels there are going to be people who lose services because of these changes, Tracey says “without a doubt."
Some researchers say as many as 65 percent of children and adults with high-functioning forms of autism would be taken off the spectrum.
"When my son was born it was one in 1,000. Today, it's one in 90,” said Tracey.
T.J. will turn 15 in June. Tracey fears her son and others like him could lose the support
"Too many kids are going to fall through the cracks,” Tracey said. “This is not going away."
Reaction from UNYFEAT
UNYFEAT, the Upstate New York Families for Effective Autism Treatment, released a statement on the proposed change to the definition of autism, saying:
"Any change in the current level of support to individuals could be detrimental to certain diagnoses on the Autism Spectrum... Changing the criteria for a diagnosis, and removing any support as a result of the change, does not change or eliminate the symptoms."