Kids losing ASD diagnosis still need ongoing care

Children who are diagnosed with autism spectrum disorder (ASD) during their toddler years may be able lose the designation as they grow up but will continue to have certain ongoing behavioral and special education needs, according to a new study.

One in 68 children is currently diagnosed with ASD, according to the Centers for Disease Control and Prevention (CDC). Autism spectrum disorder is a developmental disability characterized by impairments to behaviors related to communication and interactions with others. Symptoms vary widely from one ASD diagnosis to another, says the CDC. The diagnosis also accompanies one other developmental, psychiatric, neurologic, chromosomal, and genetic diagnosis in 83% of cases. In 10% of cases, multiple other diagnoses can be present.

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Whereas ASD can be reliably diagnosed at age 2 years, children aren’t identified with having ASD until age 4 on average. However, parents with children who later are diagnosed with ASD usually noticed some sort of developmental problem before the child’s first birthday, according to the CDC. These problems usually manifest as complaints of vision or hearing problems, as well as delays in social interaction, communication, and fine motor skills.

Although the resolution of the ASD diagnosis by a child’s school years is not a new discovery, a team of researchers studied a group of children in the Bronx who were diagnosed early and well documented as they progressed through their disorder. The goal was to identify what obstacles children who lose their ASD diagnosis must still overcome as they move forward, and how pediatricians can guide them.

Lisa Shulman, MD, neurodevelopmental pediatrician and director of Infant and Toddler Services and the Rehabilitation, Evaluation, and Learning for Autistic Infants and Toddlers program at the Children's Evaluation and Rehabilitation Center, Rose F. Kennedy Center at Albert Einstein College of Medicine, Children's Hospital at Montefiore, Bronx, New York, and her team found that although 1 in 14 children diagnosed with ASD during their toddler years will no longer meet diagnostic criteria for the diagnosis by elementary school, 7% of their study group still required some sort of intervention.

“Autism generally has been considered a lifelong condition, but 7% of children in this study who received an early diagnosis experienced a resolution of autistic symptoms over time,” Shulman says. The question, however, is what special needs might these children continue to have after the resolution of their ASD symptoms?

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"When an early ASD diagnosis resolves, there are often other learning and emotional/behavioral diagnoses that remain," Shulman says. "Understanding the full range of possible positive outcomes in this scenario is important information for parents, clinicians and the educational system."

Shulman and her team based their research on data collected from a cohort of 569 children diagnosed with ASD by a multidisciplinary team at a university-affiliated, early-intervention program between 2003 and 2013 using Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) criteria, the Childhood Autism Rating Scale (CARS), and/or the Autism Diagnostic Observation Schedule (ADOS). After a review of their symptoms within 4 years of their original diagnosis, 38 of the children were deemed to no longer qualify for the ASD diagnosis. The children came from racially and socioeconomically diverse backgrounds, and received interventions and monitoring following their initial diagnosis.

Although some of the children in the cohort lost their ASD diagnosis and improved their cognitive functioning over time, Shulman and her team discovered that 92% of children whose ASD symptoms resolved still had a variety of learning, emotional, and behavioral problems that needed to be addressed. Nearly 70% of those children had language and learning disabilities, and about 50% had externalizing problems such as attention-deficit/hyperactivity disorder or disruptive behaviors. Another quarter of the cohort had internalizing problems such as anxiety, obsessive-compulsive disorder, or selective mutism, according to the study, and three-quarters of the children studied still needed academic support after their ASD diagnosis was removed. Another 5% were diagnosed with significant mental health issues outside of ASD, and another 8% warranted no diagnosis on follow-up.

Of those children who lost their ASD diagnosis but still required academic support, 13% were in mainstream academic settings with support, 29% were in integrated settings, and 21% were in self-contained classes. Another 26% of the children who lost their ADS diagnosis were in mainstream academic settings without any additional support, Shulman says.

“This study has as a presupposition that there are such children who do unusually well in terms of improvement in original ASD symptomatology and who appear to have resolution of an early well-documented ASD diagnosis on standardized ASD instruments at follow-up,” Shulman says. “In recent studies these children have been referred to as having an ‘optimal outcome.’”

Optimal outcome is defined as a child who no longer meets criteria for ASD on standardized instruments, has achieved normal cognition, and is able to function in a mainstream academic setting without support for autism-related symptoms. Researchers have noted cases through the 2000s in which children were “cured” of autism after an early diagnosis, with studies noting between 10% and 20% of the children in their study groups with resolution of their ASD symptoms.

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Shulman says her team was interested in learning more about the challenges that are left after the resolution of ASD symptoms, and how those challenges were faced.

“While this set of residual issues has been referred to in other studies, we had the data to show the specific types of challenges they face as well as the frequency. We also were able to give a denominator to allow calculation of the frequency of optimal outcome-the percent of children in our community sample of children with early diagnosis of ASD who had this unusually good outcome (7%)-which was also important information to put the findings in context. The other finding of interest that was novel from the study is that the children whose ASD symptomatology resolved generally also had a very significant improvement in their cognitive functioning. Also, this was a very diverse population, one that is rarely represented in other outcome studies.”

The goal of the study was to characterize residual learning, cognitive, emotional and behavioral, and educational needs of children whose ASD diagnoses were resolved. Shulman says she hopes to continue her studies on ASD resolution with another control group next year. She presented the current study before the Pediatric Academic Societies in April, and the abstract is available online.

The study was funded by a grant from the Children's Evaluation and Rehabilitation Center, Rose F. Kennedy Intellectual and Developmental Disabilities Research Center.