Lost ASD diagnosis, now what?


Children that lost their ASD diagnoses are often misdiagnosed early on or have their diagnosis changed as they develop, leading researchers to question the way in which ASD is diagnosed and treated.

As the frequency of autism spectrum disorder (ASD) diagnosis has increased, researchers are examining the accuracy of the diagnoses and whether they can be resolved through early intervention or new diagnoses.

A new report reveals that while it is possible to “lose” an autism diagnosis, many of these children are later diagnosed with some other disorder as more information becomes available.

Lead author Stephen J Blumberg, PhD, of the National Center for Health Statistics, says the study confirms that ASD diagnoses may not always be permanent, but that doesn’t mean these children are in the clear.

“Autism Spectrum Disorder diagnoses can and sometimes do change.  Approximately 1 in 8 school-aged children who had been diagnosed with ASD by a doctor or other healthcare provider no longer had ASD, according to their parents,” Blumberg says. “The most common reason-cited by parents of 3 in 4 children who lost their diagnosis-was that the diagnosis was changed as a result of new information. Lost diagnoses were more likely if the parents did not have early concerns about their children’s development and if the child was not referred to and diagnosed by a specialist.”

Autism spectrum disorders are neurodevelopmental disorders characterized by impairments in social interaction and communication. Repetitive behavioral problems are common in ASD, which is considered in many cases to be a chronic and permanent condition with variations in severity over time. In those cases where severity of ASD diminishes, children are deemed to have achieved an optimal outcome, or may have lost their diagnosis, according to the report.

Early intensive therapy may aid in children improving outcomes or losing their ASD diagnosis, but therapeutic interventions are unlikely to improve ASD alone, according to the report. This may occur as a result of a later alternative diagnosis or initial misdiagnoses with ASD attributable to other developmental delays.

According to the report, between 18% and 37%-based on 2 separate studies-of children diagnosed with ASD at age 2 years did not show any signs of ASD by age 4 years. In another national report cited in the study, 38% of children aged 3 to 17 that were diagnosed earlier with ASD did not have the diagnosis at the time of a phone survey of parents.

NEXT: What factors may lead to the loss of an ASD diagnosis?


The study identified a number of factors that may lead to the loss of an ASD diagnosis, including intelligence quotients greater than 70, early language and communication skills, and those who received early and intensive therapy. Children later diagnosed with pervasive developmental disorder-not otherwise specified and Asperger’s disorder are also likely to lose an ASD disorder, according to the report.

Approximately 13% of the children ever diagnosed with ASD were estimated to have lost the diagnosis, and parents of 74% of them believed it was changed due to new information. Previously diagnosed children were less likely to have parents with early concerns about verbal skills, nonverbal communication, learning, and unusual gestures or movements. They were also less likely to have been referred to and diagnosed by a specialist. Previously diagnosed children were less likely to have ever received a diagnosis of Asperger’s disorder or autistic disorder.

Of those children who lost the diagnosis, their parents had not been worried about the child’s development at younger ages, and they had not reported any concerns to their physician. Early screenings by pediatricians came under question in late summer, when a federal panel requested additional research into the efficacy of early autism screenings. If adopted, the panel’s recommendation would sideline screenings in the absence of parental concerns about development.

The study also explored parental beliefs about the loss of an ASD diagnosis. Parents often endorsed multiple reasons for the loss of an ASD diagnoses, including treatment changed the diagnoses; the condition went away on its own; a healthcare provider changed the diagnosis based on additional information; a disagreement with the initial diagnosis; and that the diagnosis was put in to place merely to get the child access to certain services. The most common of these, was a lost diagnosis due to new information (73.5%), and 24% reportedly never had ASD but were diagnosed in order to receive services, according to the report. In cases of lost diagnoses in which new information was obtained, half of the children who lost their ASD diagnosis due to new information were later diagnosed with another form of developmental, learning, emotional, or mental health disorder.

The report reiterates an earlier report that suggests that while some children diagnosed with ASD in their toddler years may lose the diagnosis, they could still require ongoing care.

NEXT: What is the most common replacement diagnosis?


Attention deficit/hyperactivity disorder (ADHD) was the most common replacement diagnosis (45.9%) in children who lost an ASD diagnosis, following by a sensory/auditory/processing disorder (22.6%), anxiety (17%), depression (12.9%), behavioral problems (9.2%), or learning disabilities (7%).

Attention deficit/hyperactivity disorder can be misdiagnosed as ASD early on because of the overlap between the symptoms of the conditions.

“As language and social skills deficits are addressed, hyperactivity and inattentiveness may become more obvious and be diagnosed as ADHD,” according to the report. “In some children, this may be a replacement diagnosis, but for other children, it may be an additional diagnosis reflecting problems in attentional flexibility beyond what is typical for children with ASD.”

The study concludes that, due to the high percentage of children who lost their ASD diagnosis due to a change in diagnosis suggests a higher rate of overdiagnosis that expected.

“Overdiagnosis could be the result of difficulty distinguishing children with ASD from children who possess language delays or global developmental delays and because variability in the quality of screening and evaluation practices confound diagnostic precision,” according to the report.

The American Academy of Pediatrics (AAP) currently recommends that pediatricians who suspect an ASD diagnosis through initial screening should refer those children for intervention services before a comprehensive ASD evaluation is performed, according to the report. A small portion of the children who lose an ASD diagnosis do so through treatment of maturity (21%), and the remainder are diagnosed with something else later, but early intervention services may help improve a host of other conditions.

Few children initially diagnosed by an ASD specialist ever lose their diagnosis, and the study suggests that specialists may be better at other healthcare providers at making correct initial diagnoses.

The results of this study suggest that some children with developmental delays, attentional flexibility problems, or other conditions may be receiving provisional yet inaccurate diagnoses of ASD from nonspecialists, even when their parents do not present with concerns about verbal skills, nonverbal communication, learning, and unusual gestures,” the report states. “This could be a natural consequence of changes in ASD awareness among healthcare professionals and the push by national organizations such as the AAP to increase the use of developmental screening tests by general pediatricians with all young patients regardless of parents’ presenting concerns.”

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