Diagnosis lost: Differences between children who had and who currently have an autism spectrum disorder diagnosis.
Stephen J Blumberg, Benjamin Zablotsky, Rosa M Avila and 3 others
PMID 26489772WHAT IT FOUND
13.1% of school-aged children ever diagnosed with ASD no longer had the diagnosis.
Parents most often said new information changed it, while 21.0% said treatment or maturation.
Key findings
01In the weighted national sample, 13.1% of school-aged children ever diagnosed with ASD were estimated to have lost the diagnosis.
02Parents most often said the diagnosis was changed due to new information (73.5%), while 24.2% said it had been given to obtain needed services and 21.0% said treatment or maturation.
03After matching on current characteristics, previously diagnosed children were less likely to have had early parental concerns about verbal communication, nonverbal communication, learning, or unusual gestures, and less likely to have been referred to or diagnosed by a specialist.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The study is cross-sectional, so it cannot show whether a lost diagnosis was caused by treatment, maturation, misdiagnosis, or something else. All information came from parents, and the paper says it was not confirmed with medical records or independent evaluation. The overall survey response rate was low, and the sample was limited to children with special health care needs. Current functioning and symptoms were measured at one time point, so they may not describe the child when the diagnosis was lost. The matched analysis cannot adjust for unmeasured factors that might have influenced whether a diagnosis was lost. Replacement diagnoses were available only for a restricted subset of children whose parents were explicitly told the child did not have ASD and had another condition. Some parents of children with Asperger’s disorder or PDD-NOS may have said the child did not currently have ASD because they did not recognize those labels as ASD.
Declared interests
The survey was sponsored by the National Institute of Mental Health and conducted by the Centers for Disease Control and Prevention. The authors reported no biomedical financial interests or potential conflicts of interest.
The easy way to misread this
Do not read a lost ASD diagnosis as evidence that therapy cured the child or that the child no longer needs services. The study is cross-sectional and parent-reported, and the most common reason parents gave was that new information changed the diagnosis.