UConn psychology professor Deborah Fein is the lead author of an article just published in the Journal of Child Psychology and Psychiatry which indicates that some children who are accurately diagnosed with autism in early childhood may lose the symptoms as they grow older.
The article, “Optimal Outcome in Individuals with a History of Autism,” appears in the February 2013 issue of the publication. Co-authors include Professor Marianne Barton, director of clinical training and director of the Psychological Services Clinic in UConn’s Department of Psychology.
Autism Spectrum Disorder and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction and verbal and nonverbal communication, and repetitive behaviors. Statistics from the U.S. Centers for Disease Control and Prevention identify around 1 in 88 American children as being on the autism spectrum.
Fein, UConn Board of Trustees Distinguished Professor of Psychology, has been a leader in autism research since she first worked with children with the disability in the early 1970s. She says the findings in the current study are important, but like much research, raise other questions that are as yet unanswered.
“We want to find out what percentage of children are capable of a favorable outcome, what type of behavioral intervention is necessary, what is it in a child’s brain that allows change to take place,” she says. “One thing we do know is that in virtually every case of a child who loses the symptoms of this disorder, the outcome is due to years of unwavering dedication and hard work by parents, teachers, and the children themselves.”
The study, supported by the National Institutes of Health, consisted of carefully documenting a prior diagnosis of autism in a small group of school-age children and young adults with no current symptoms of the disorder who were functioning on a par with their mainstream peers. These 34 children were considered the Optimal Outcome group. This group was then compared with two other cohorts consisting of 44 children with high-functioning autism and 34 children with typical development.
This report is the first in a series that will probe more deeply into the nature of the change in the status of the Optimal Outcome children. Having at one time been diagnosed with Autism Spectrum Disorder, these young people now appear equal to typically developing peers. The study team is continuing to analyze data on changes in brain function in these children, and attempting to determine whether they have subtle residual social deficits.
Also under review is the type of interventions these children received, and to what extent that intervention is predictive of a successful transition.
“Although the diagnosis of autism is not usually lost over time, the findings suggest that there is a very wide range of possible outcomes,” says Dr. Thomas R. Insel, director of the National Institute of Mental Health. “For an individual child, the outcome may be knowable only with time and after some years of intervention. Subsequent reports from this study should tell us more about the nature of autism, and the role of therapy and other factors in the long-term outcomes for these children.”
Prior studies have examined the possibility of a loss of diagnosis, but questions remained regarding the accuracy of the initial diagnosis and whether children who ultimately appeared similar to their mainstream peers initially had a relatively mild form of autism.
In Fein’s study, early diagnostic reports by clinicians with expertise in autism diagnosis were reviewed by the investigators. As a second step to ensure accuracy, a diagnostic expert without knowledge of the child’s current status reviewed reports in which the earlier diagnosis had been deleted.
The results suggested that children in the Optimal Outcome group had milder social deficits than the high functioning autism group in early childhood, but had other symptoms, related to communication and repetitive behavior, that were as severe as the latter group.
In addition, to be included in the Optimal Outcome group, children had to be in regular education classrooms with no special education services aimed at autism, and not show any signs of problems with language, face recognition, communication, and social interaction.
While the current study cannot provide information on what percentage of children diagnosed with Autism Spectrum Disorder might eventually lose the symptoms, investigators have collected a variety of information on the children, including structural and functional brain imaging data, psychiatric outcomes, and information on the therapies the children received.
Analysis of that data, which will be reported in subsequent papers, may shed light on questions such as whether the changes in diagnosis resulted from a normalizing of brain function, or if these children’s brains were able to compensate for autism-related difficulties.
According to Fein, “All children with Autism Spectrum Disorder are capable of making progress with intensive therapy, but with our current state of knowledge, most do not achieve the kind of optimal outcome that we are studying. Our hope is that further research will help us better understand the mechanisms of change so that each child can have the best possible life.”