Health & FitThe Autism Diagnosis That Isn't Always Permanent
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Haley Moss has turned her autism into a strength, becoming an advocate for neurodiversity. “I was always interested in making a difference and wanted to make a difference in the disability community,” she said. While Moss excelled at school, she struggled to make friends. In elementary school, she often hung out with boys because they enjoyed Pokémon and video games like her. But still understanding social situations never felt natural. “It is the behind the scenes stuff,” she explained.
A growing body of evidence demonstrates that some children diagnosed with autism spectrum disorder, or ASD, can outgrow their diagnosis.
This isn’t unqualified good news: Experts caution that those children often continue struggling with other conditions.
The latest evidence was published this month in the Journal of Child Neurology. It demonstrated that among 569 children diagnosed with autism between 2003 and 2013, 38 children—or about 7%—no longer met the diagnostic criteria.
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Lisa Shulman is first author of the study and professor of pediatrics at Albert Einstein College of Medicine and Montefiore Health System in Bronx, N.Y. She says that the majority of the 38 children had other new learning and language disabilities or health conditions, such as attention-deficit hyperactivity disorder, anxiety or disruptive behavior disorder. They still needed academic or behavioral support.
“An early diagnosis for autism is a red flag—it may just not be a red flag for autism,” Dr. Shulman says. “In a certain percentage of kids they have other problems. They eventually differentiate themselves.”
She says it’s hard to determine if these children who outgrow their diagnoses do so because of their own natural progression or in response to early intervention. The children who do usually have the mildest cases. Another possible explanation: Some children were misdiagnosed.
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Only three of the 38 children had no other conditions or problems.
Children who are longer diagnosed with ASD show improvements with communicating and interacting with other people, which can include more eye contact and an easier time with back-and-forth conversations.
The children, whose mean age was 2.5 years old, were diagnosed and treated at a university-affiliated early intervention program in the Bronx. They were re-evaluated four years later, on average. Most of the children received a mix of speech and occupational therapy and applied behavior analysis, the standard treatment for ASD.
Children who are later diagnosed with disorders like psychosis or anxiety may have had them all along. But such conditions are hard to diagnose before children can speak well, Dr. Shulman notes.
Autism rates in the U.S. have increased steadily over the past two decades. About one in 59 U.S. children are diagnosed with ASD by age 8, according to 2014 data, the most recent available from the Centers for Disease Control and Prevention. That’s a 15% increase from 2012 and 150% increase since 2000. (Total numbers for conditions whose diagnoses are somewhat subjective and not based on blood or another type of definitive test can be difficult to get.)
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Other studies have found similar results.
Among 1,218 parents who had reported having a child once diagnosed with ASD, about 7% said their child did not currently have the condition, research published in the journal Pediatrics in 2018 found.
Michael Kogan is director of the office of epidemiology and research at the Health Resources and Services Administration, part of the U.S. Health and Human Services Department. He attributes part of the explanation to the possibility that doctors were diagnosing children with ASD along with other conditions to help them get a range of medical services.
Stephen Blumberg, division director at the National Center for Health Statistics, examined why this happens to some children. His study found that about 13% of children ever diagnosed with ASD had lost their diagnosis.
About 74% had parents who said their child’s diagnosis changed due to new information. About one-quarter had parents who said their child never had ASD but were given the diagnosis to receive services. And about 20% had parents who said medical providers no longer considered the children to have autism due to treatment or maturity. (Parents could report multiple reasons.)
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Nearly all of the children no longer considered to have ASD had other developmental conditions, Dr. Blumberg says. The most common was ADHD. He published his findings in a 2015 study in the journal Autism.
Christopher Gillberg is a professor of child and adolescent psychiatry at Gothenburg University in Sweden. He was senior author of a 2015 study in the journal Neuropsychiatric Disease and Treatment. It followed 17 children diagnosed with ASD no older than 4 who, after two years of treatment, no longer met the diagnostic criteria for the disorder. By the time the children were about 10, the researchers found some had regressed and even met the criteria for ASD again.
The researchers concluded that the children needed to be tracked for more than two years. “The most important message is, if you have this kind of problem in early life, you are going to be in need of some kind of support for many years,” Dr. Gillberg says.
Deborah Fein is a professor of psychology and pediatrics at the University of Connecticut who has done research on children no longer considered to have ASD. She says applied behavior analysis and early intervention appear to be factors that can help young children with ASD.
She has been following a group of 34 children who no longer have an ASD diagnosis. In her research, while children in this group continue to have conditions like ADHD or anxiety, those rates go down over time.
“There has to be something biologically different between those kids who, when given the same treatment, bloom, compared to those who stay the same,” Dr. Fein says. “We just don’t know what it is.”
Write to Sumathi Reddy at firstname.lastname@example.org
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