A plan to revise the criteria for diagnosing autism-related conditions is worrying parents and clinicians who fear fewer young people will be eligible for government-provided education and health services.
Even though the panel of experts charged with revising the guidelines vows no one will be denied a diagnosis or have their current one redefined, some stakeholders are concerned those assurances don't carry the weight of a guarantee.
"Clearly, there's change in the wind," said Ernst VanBergeijk, associate dean of the New York Institute of Technology and director of its Vocational Independence Program in Central Islip. His program for people from ages 16 to 22 with special needs provides job training and coursework in independent living, social and academic skills.
"I'm nervous," VanBergeijk added, "because I don't know what's going to happen."
With an estimated one in every 110 U.S. children affected by an autism-related disorder and expenses for social services possibly exceeding $100,000 per year, there is a lot at stake.
An American Psychiatric Association task force is updating diagnostic criteria to be included in the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders. The book, called the DSM, has long been considered key to practitioners who diagnose mental health conditions. The last update was in 1994; the next manual is expected to be released in May 2013.
Dr. Fred Volkmar of Yale University, a former member of the panel, suggests the panel's upcoming diagnostic criteria could exclude thousands of people. As a result, he predicts the criteria could cut off legions of young people from vital services.
Families depend on state-funded interventional programs that help with behavior, speech and social skills. Additionally, school districts offer special-education programs. Studies have shown that early intervention substantially aids development.
Volkmar, director of Yale's Child Study Center, found in a preliminary study that half of so-called "higher functioning" children and adults with autism-related conditions would fail to qualify for the diagnosis under the proposed new criteria.
Of the 60 students in his program, VanBergeijk said about 40 percent are considered higher functioning and have diagnoses such as Asperger's syndrome and pervasive developmental disorder not-otherwise-specified -- PDD-NOS.
"I openly admit it: Some of these kids are smarter than I am," said VanBergeijk, who holds a doctorate in social work. "One of our students who was in the program had an IQ of 143."
Fewer might qualify
VanBergeijk fears fewer teens and young adults would qualify for a program aimed at independence if they could no longer be diagnosed using current criteria.
Long Island advocate and parent Evelyn Ain also is worried.
"I just hope the research is wrong," said Ain, publisher of Hicksville-based Spectrum magazine, a national publication for families of children with autism.
Ain's son, Matthew, 11, has pervasive developmental disorder.
"If our young people do not have access to services, they will be sitting in institutions and a burden to society like they were 40, 50 years ago.
"That would be an absolute waste of human lives," she said.
Volkmar announced his findings earlier this month during a medical meeting in Iceland.
"Given the potential implications of these findings for service eligibility, our findings offer important information for consideration by the task force," Volkmar said in a statement.
New York, like most states, pays for autism-related social services. Without assistance, parents would have to foot the bill, which along with other expenses, could exceed $100,000 per child annually.
But some experts contend even if Volkmar's research is correct and the new diagnostic guidelines, as he defines them, become the rule, the debate about eligibility for services would shift from the medical community to the political arena. Lawmakers would then battle over who qualifies.
Members of the DSM task force are disturbed that Volkmar went public with preliminary research.
"I've been getting frantic phone calls and emails from parents," said task force member Dr. Catherine Lord, director of the Institute for Brain Development in Manhattan, a joint project of Columbia University College of Physicians and Surgeons, NewYork-Presbyterian Hospital, Weill Cornell Medical College and the New York Center for Autism.
"The intention of the new criteria is not to eliminate any child from a diagnosis," she said.
"We really don't know anything about this study and we haven't seen it," Lord added. "When we see it we will take it into account but they're not allowed to show anyone what they did until it's [officially] published in April."
Lord and her task force colleagues have conducted studies of their own and they don't paint a picture as dire as Volkmar's.
Recent field trials
Two recently completed field trials, at Baystate Medical Center in Springfield, Mass., and at Stanford University in Palo Alto, Calif., found the new definition won't drastically change the number of autism diagnoses.
One of the field trials showed a 1 percentage point rise in diagnosis rates under the possible new criteria and the other showed a drop of 4 or 5 percentage points.
Lord said the task force hopes to craft criteria that sweep the various autism-related conditions under a single rubric -- autism spectrum disorder -- to eliminate confusion.
"We think this is important because in some states kids with some diagnoses can't get services," Lord said. "We're actually trying to make more people eligible for services."
The new criteria divides diagnoses into two distinct areas: communication and repetitive behavior.
Under the communication umbrella are those who have trouble with relationships and nonverbal communication, such as making eye contact or using gestures. It also includes problems with social reciprocity, such as taking turns or holding a conversation.
With behavior, patients may have to meet two of the criteria among actions such as having limited interests, getting stuck on repetitive activities, having strong or muted responses to sensory stimulation like sound and taste, or developing rituals.
Dr. Darrel Regier, director of research at the psychiatric association, said, "The new criteria are more scientifically based and will actually improve the accuracy of diagnosis."
Doctors not connected with the task force want to see Volkmar's study when it's published in April.
"The definition of autism has been loosening over the past 20 years," said Dr. Steven Pavlakis, director of developmental medicine and child neurology at Maimonides Medical Center in Brooklyn.
"It wouldn't make sense to narrow the definition," Pavlakis said. "I think it's incumbent on us as a society to say if our current definitions have worked, why change them."
Support is also strong for Volkmar.
"Dr. Volkmar is one of the pre-eminent autism experts in the country," said Dr. Andrew Adesman, chief of developmental and behavioral pediatrics at Cohen Children's Medical Center in New Hyde Park. "The bottom line is that change is coming and nobody knows what the impact of that change will be."
There are three different types of autism spectrum disorders:
Autistic disorder (also called "classic" autism": Significant language delays, social and communication challenges, and unusual behaviors and interests. Many with autistic disorder also have intellectual disability.
Asperger syndrome: Typified by milder symptoms of autistic disorder. Most with Asperger have social interaction challenges and unusual behaviors and interests.
Pervasive developmental disorder -- not otherwise specified (PDD-NOS; also called "atypical autism") Includes those who meet some of the criteria for autistic disorder or Asperger syndrome, but not all. Symptoms are fewer and milder than those associated with autistic disorder
Source: Centers for Disease Control and Prevention