TRENTON — Some parents look back at the moment their child was diagnosed with autism and remember it as the worst day of their lives. Not Meredith Blitz-Goldstein.
The Verona mother said she already knew there was something seriously wrong with her 2-year-old son, Matthew. When he spoke, he uttered a word or two. He seldom made eye contact or slept through the night. Until he was diagnosed with a milder form of autism known as "pervasive developmental disorder, not otherwise specified," she didn’t know how to help him.
"I was very happy to have the diagnosis. I knew the monster I was dealing with. The diagnosis was like handing me the ticket to go forward," Blitz-Goldstein said.
This is why she is among a growing number of parents alarmed by the recent news that the American Psychiatric Association has proposed a narrower redefinition of autism — one that focuses on children who exhibit the most disruptive behavior and difficulty communicating and forming relationships.
Milder forms of autism, such as Asperger’s syndrome or Matthew’s diagnosis, would be dropped from the manual for mental disorders — the definitive reference guide for health professionals, researchers and schools, as well as from insurance companies that help families pay for therapy.
Supporters of the proposed change say autism is too broadly defined, and, as a result, some children are misdiagnosed.
But anxiety is running high among parents in New Jersey, home to one of the highest autism rates in the country. Relying on the current definition of autism, thousands of families have recouped tens of millions of dollars they’ve spent on home treatment under a 2-year-old state law that requires health plans run or regulated by the state to cover autism therapies.
Since 2010, two leading state health plans paid $38.6 million to 13,252 families, state Treasury spokesman Bill Quinn said.
Blitz-Goldstein said her son’s therapy, which cost about $300,000 over five years, has worked. Matthew, now 7, is in a mainstream first-grade class because of his autism diagnosis and the 30-plus hours of help he got each week for years.
"He’s a regular kid now," she said. "The fear is if parents like me are not able to access these services, they may not make it to where Matthew is now."
Jodi Bouer, an attorney for Blitz-Goldstein, said, "Without the diagnosis being protected by statute and compelling treatment, there is no hope of coverage ... for lots of kids who desperately need and will benefit from the services."
The association’s committee rewriting the manual said the proposal, announced Jan. 20 and still in the draft stage, is designed to help patients and doctors.
THE MATTER OF COST
Committee members say they are not redefining autism to curb costs. But money is clearly an issue raised in articles published by psychiatrists researching the revised manual.
One published last month in the Journal of the American Academy of Child and Adolescent Psychiatry said: "The importance of accurately identifying individuals with autism has never been greater, particularly given the growing prevalence, considerable family and societal costs, and recognized importance of early diagnosis and intervention."
The state says the number of children in New Jersey public schools with autism nearly tripled from 4,624 in 2002 to 13,265 in 2010. Some who are shaping the proposal attribute this to the 1994 decision to include Asperger’s as a form of autism in the manual. The association says adding Asperger’s enabled higher-functioning children to get treatment, but "increases the possibility that there may be over-diagnosis" of autism.
Kim Coleman, superintendent of the Morris-Union Jointure Commission, which provides special education services in 29 school districts, said Asperger’s isn’t understood well enough to be eliminated from the manual, worrying this could postpone help for kids. "The later you identify a child with autism … the less effective services become," Coleman said.
Bryan H. King, director of Seattle Children’s Autism Center who is on the committee, said a proposed "social communication disorder" diagnosis may better fit higher-functioning children "who do not meet criteria for (autism) but who still have significant impairments that warrant treatment."
The association, which has spent a decade on the new criteria, says testing on children and adults "does not indicate that there will be any change in the number of (autism) patients."
AN EXPERT DISAGREES
Fred Volkmar, director of the Child Study Center at the Yale School of Medicine, strongly disagrees. He delivered a preliminary report at a conference in Iceland analyzing the impact of the new definition, which was reported in the New York Times a day before the association announced it. Volkmar said 55 percent of people who fit the current autism definition would no longer qualify.
Schools also use the autism manual. But Suzanne Buchanan, clinical director for Autism New Jersey, said schools must "meet the educational needs of their students, with or without a diagnosis" and the group would help families and schools "understand the child’s specific needs and rights."
Christine Badalamenti of Glen Ridge said she fears families may lose out because their children aren’t disabled enough to fit the new definition. She said her son, Alex, 6, was helped by a team of therapists who spent eight hours a day for four years teaching him how to speak, listen, focus and "relate to everyone and everything in the house." He is now in school assisted by a classroom aide.
"He wouldn’t have qualified for those intensive services" without the autism diagnosis, she said. "It ’s is a double-edged sword. Do you want the label or the help? We chose the help, and it made all the difference."
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N.J. parents fear narrower definition of autism will mean less help for kids