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"Recovery" by the Numbers: How often do children lose an autism diagnosis?

Marina Sarris
Interactive Autism Network at Kennedy Krieger Institute
Date Published: 
January 27, 2016

Photo of abacus, to illustrate studies of the number of children who lose an autism diagnosisHow many children shed their autism diagnosis, either for another diagnosis or no diagnosis at all?

An often-cited 2008 review of research studies found that from 3 to 25 percent of people eventually lose their autism diagnosis,1 a wide margin. Some of those studies involved relatively small groups of children (10 to 50, for example). What happens if you cast a wider net, and looked at larger, nationwide studies?

Two major U.S. studies have found that 4 to 13 percent of children lose their autism spectrum disorder (ASD) diagnosis, but that doesn't always mean a complete "recovery" from developmental problems.

A 2012 study, led by a government epidemiologist, found that 4 percent of children lost their diagnosis by age 8.2 For that study, researchers examined the records of almost 1,400 children who had been diagnosed with autism in four states – Arizona, Georgia, Maryland, and South Carolina – that are part of the U.S. Autism and Developmental Disabilities Monitoring (ADDM) Network. This is believed to be the first population-based study of factors associated with a lost autism diagnosis.

Replacing ASD Diagnosis with Another One

Sixty-one children lost their autism spectrum diagnosis by age 8. But almost all of them had at least one other diagnosis, such as Attention-Deficit Hyperactivity Disorder (ADHD), developmental delay, or language delay. Fifty of the 61 children were receiving special education help at school, which suggests ongoing academic challenges.

The children who no longer had autism also tended to have been diagnosed earlier, at or before 30 months of age. Does that mean they benefited from earlier autism intervention, or were they misdiagnosed?

The researchers can't say, because the study involved reviewing records, not examining children. "We cannot determine whether this change in classification represented an improvement in functioning or a substitution in diagnosis (especially since these alternative diagnoses could have been given at earlier ages as well). However, these results suggest that ASD may be difficult to distinguish from other developmental conditions in some children,” said team leader Lisa D. Wiggins PhD, of the Centers for Disease Control's National Center on Birth Defects and Developmental Disabilities, in an email.

One caveat: This study did not follow children past age 8, so any children who may have lost their diagnosis in late childhood or beyond would not be counted.

Another team, this one led by Stephen J. Blumberg PhD of the U.S. National Center for Health Statistics, used different methods to examine the rate at which children lose an autism diagnosis. In this study, researchers used telephone surveys of more than 40,000 parents of children with special health care needs to identify more than 1,500 who had received diagnoses of ASD. Those parents from across the country then participated in the Survey of Pathways to Diagnosis and Services, sponsored by the U.S. National Institutes of Health, and conducted by telephone and mail.3

Dr. Blumberg's team studied 1,420 children who were currently diagnosed with autism, and 187 who used to have autism. The children were ages 6 to 17, meaning some were younger or older than the 8-year-olds in Dr. Wiggins' study.

Parents Say Why Children Lost ASD Diagnosis

Photo of dancing girl, illustrating article about studies of children losing autism diagnosisAbout 13 percent of the children had lost their autism diagnoses, according to their parents.3 Those children differed from those who continued to have autism. For one, they were less likely to have been referred to, and diagnosed by, a specialist. Their parents had fewer early concerns about their speech, nonverbal communication, learning, and gesturing. In other words, their difficulties seemed milder at the start.

"It's worth recognizing that the children who lost their diagnosis were higher functioning and had less severe symptoms than the children who still had an autism diagnosis," said Dr. Blumberg, a research psychologist and statistician. Some children with developmental and attention problems may be getting "provisional but inaccurate diagnoses of ASD from non-specialists," even when parents are not concerned about autistic symptoms, the study concluded.3

Three-fourths of their parents said the diagnosis was removed due to "new information," which was not specified in the study. One possibility is that the ASD diagnoses were "essentially preliminary diagnoses" that were changed "as the child matured and more testing was done," Dr. Blumberg said. A fifth of the parents credited successful autism treatment – or the child's maturation – for the diagnoses lost.

Among the lost-diagnosis group, one fourth of the parents made an interesting claim. They said their children never had autism, but were given the diagnosis anyway in order to receive services. "Our study suggests over-diagnosis of ASD may occur and may be more common than expected. But our study also shows that some child are said to have lost the diagnosis due to treatment or maturity," Dr. Blumberg said.

Lest anyone jump to conclusions, the researchers make one thing clear: possible over-diagnosis does not explain the rise in autism cases in recent decades. The percentage of children who may have been misdiagnosed is still far too small to explain the rise in autism cases.3

The Autism-ADHD Connection

As with Dr. Wiggins' study, a large percentage of children who lost their autism diagnosis ended up with an ADHD label. This may be due to improvement in autism symptoms, or because of symptoms of the two disorders seem to overlap, the Blumberg study said. "ADHD was the most common replacement diagnosis for ASD. It's important to note that children who lost the autism diagnosis were no more likely to have ADHD than children currently diagnosed with ASD. Symptoms of hyperactivity and inattention are common in children with ASD," Dr. Blumberg said. Other children saw their diagnosis changed from autism to sensory processing disorder, anxiety, or learning disability. The researchers relied on parents' responses, and did not examine the children or their medical records.

Few studies of autism "recovery" get the same numbers, in part due to differences in study methods, such as how subjects are selected, their ages, how diagnoses are confirmed, how information is gathered, and how the outcome is defined.

One of the larger clinical studies of autism outcomes found that 9 percent had shed their autism diagnosis by age 19. Researchers from Weill Cornell Medical College in New York followed 85 children over almost two decades. Nine percent had "largely overcome core difficulties associated with ASD" and become full participants in the "social world."4 That figure happens to be about midway between the 4 and 13 percent rates found by the larger two studies.

Children Diagnosed Earlier More Likely to Lose Label

Researchers may not be able to say exactly what causes a lost diagnosis in each case, but many point out that the children who are diagnosed and treated early tend to improve the most.

"Research tells us the earlier a child with ASD is identified and connected to services, the better," Dr. Wiggins said. "The results of our study support this claim in that children diagnosed with ASD at 30 months or younger were more likely to have a change in classification from ASD to non-ASD than children diagnosed with an ASD at 31 months or older."

"It is therefore important for every parent to track their child's development and act quickly if there is a concern. CDC has checklists to help parents track their child's development. They are free and you can find them at www.cdc.gov/milestones. If parents have a concern about their child’s development they should immediately talk to their healthcare provider about those concerns,” she said.

Under the American Academy of Pediatrics (AAP) guidelines, your child’s doctor should perform regular developmental surveillance at well-child visits, with screenings at 9, 18, and 30 months, and screenings for autism at the 18-month and 24-month check-ups. U.S. child care centers should screen children as well.

"The child’s health care professional and early childhood professional should partner with parents to monitor their child’s development and get him or her the help needed as soon as possible," said IAN Director Paul H. Lipkin MD, a neurodevelopmental pediatrician and leader in the AAP on developmental screening initiatives.

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References: 
  1. Helt, M., Kelley, E., Kinsbourne, M., Pandey, J., Boorstein, H., Herbert, M., & Fein, D. (2008). Can children with autism recover? if so, how? Neuropsychology Review, 18(4), 339-366. doi:10.1007/s11065-008-9075-9 [doi]
  2. Wiggins, L. D., Baio, J., Schieve, L., Lee, L. C., Nicholas, J., & Rice, C. E. (2012). Retention of autism spectrum diagnoses by community professionals: Findings from the autism and developmental disabilities monitoring network, 2000 and 2006. Journal of Developmental and Behavioral Pediatrics, 33(5), 387-395. doi:10.1097/DBP.0b013e3182560b2f [doi]
  3. Blumberg, S. J., Zablotsky, B., Avila, R. M., Colpe, L. J., Pringle, B. A., & Kogan, M. D. (2015). Diagnosis lost: Differences between children who had and who currently have an autism spectrum disorder diagnosis. Autism: Che International Journal of Research and Practice, doi:1362361315607724 [pii]
  4. Anderson, D. K., Liang, J. W., & Lord, C. (2014). Predicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 55(5), 485-494. doi:10.1111/jcpp.12178 [doi]