School & District Management

Children Who Lose Autism Label Subject of New Research

By Christina A. Samuels — October 28, 2015 2 min read
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Some children who are diagnosed with an autism spectrum disorder go on to lose that diagnosis, but according to their parents, that change is not because of treatment or the child’s maturity.

Instead, most of the parents of children who shed the autism label reported that health professionals made a different diagnosis—often attention deficit hyperactivity disorder—based on more information on the child’s behavior.

The findings, published this month in the journal Autism, offer insight into the differences between children with continuing diagnoses of autism and children who have the diagnosis but lose it later, said Stephen J. Blumberg, the report’s lead author and an associate director for science with the Centers for Disease Control and Prevention’s National Center for Health Statistics. The survey based its findings on parental reports on 1,420 children ages 6 to 17, 187 of whom—about 13 percent—were once diagnosed with autism but were no longer believed to have it.

The study found children who lost the autism diagnosis generally had fewer social or behavioral problems than children who retained the label. Their parents were also less likely to have had early concerns with their child’s verbal skills, or with their child making unusual or repetitive gestures, one hallmark of autism.

Children who lost their autism diagnosis also were less likely to have been diagnosed by an autism specialist. About 10 percent of the previously diagnosed children got their diagnosis from a specialist, compared to about 20 percent of the children with a continuing diagnosis. Blumberg said two different factors may be at work there: specialists may be better at diagnosing autism, or parents who have serious concerns about their child’s behavior may be more likely to seek out a specialist.

(It’s interesting to note that most diagnoses of autism are not made by specialists in the disorder, according to the parents surveyed. Close to 50 percent of the diagnoses come from a mental-health provider, and over 20 percent come from school-based professionals, such as school psychologists or school-based therapists.)

Children Who Lose Autism Label Still Need Support

The parents also reported that their children were not “cured.” ADHD was the most common replacement diagnosis for autism, and other substitute diagnoses included sensory, auditory or processing disorders, anxiety or depression, behavioral problems or learning disabilities.

The mislabeling also doesn’t explain away the increase in autism prevalence seen over the last several years, Blumberg said. CDC researchers now estimate 1 in 68 children have an autism spectrum disorder, compared to 1 in 150 back in 2000.

“The study confirms that ASD diagnoses can and sometimes do change as children mature,” Blumberg said. But, he added, “the study doesn’t suggest there’s a high rate of complete recovery from autism due to treatment. Almost all of the children had a current developmental diagnosis and still needed services.”

File photo: Jack Ursitti, 7, of Dover, Mass., has been diagnosed with autism and uses an iPad for leisure and for educational activities.—M. Scott Brauer for Education Week

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A version of this news article first appeared in the On Special Education blog.