US study highlights overdiagnosis of ASD

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A new Government study of US children diagnosed with ASD suggests that as many as 13% of them lose the diagnosis and that almost three-quarters of those do so because of ‘new information’

The study carried out by researchers at the US Centers for Disease Control and Prevention, the University of Washington, the National Institutes of Health, and the Health Resources and Services Administration, supports several previous studies suggesting overdiagnosis of children with ASD.

The new study also explores in greater detail which previously diagnosed children are more likely to lose their ASD diagnosis and why. It uses the largest national sample to date to examine retrospective parental reports about the characteristics of their children around the time of the initial ASD diagnosis, how the initial diagnosis of ASD was obtained, and who provided it, to determine whether these can predict future loss of ASD diagnosis.

Previous studies suggest that children with higher IQs (>70), early communication and language abilities, and those who have received earlier and more extensive interventions are more likely to lose their ASD diagnosis. Others suggest that the ASD subtype diagnosis may be a determining factor, with children diagnosed with pervasive developmental disorder—not otherwise specified (PDD-NOS) and Asperger’s disorder being more likely to move off the spectrum than children diagnosed with autistic disorder.

Of the children ever diagnosed with ASD, 13.1% were estimated to have lost the diagnosis. The key differences between those previously diagnosed and those currently diagnosed were that the latter were more likely to currently possess essential daily living skills such as using the bathroom by themselves, feeding themselves, and asking for things or information when needed.

Children currently diagnosed with ASD also had a higher mean factor score on the Children’s Social Behavior Questionnaire (CSBQ), indicating a higher level of autism symptomatology than those previously diagnosed.

The most common perceived reason for a lost diagnosis was a change due to new information (73.5%). Approximately one in four children who lost their ASD diagnosis were said to have never had the condition but to have received the diagnosis due to a need for a diagnosis to receive services (24.2%). The next most common reason for a lost diagnosis was treatment or maturation (21.0%). A small proportion of previously diagnosed children had parents who simply believed that their child’s ASD diagnosis had been incorrect despite the doctor’s judgement (1.9%).

The researchers suggest overdiagnosis could be the result of difficulty distinguishing children with ASD from children who possess language delays or global developmental delays and because of variability in the quality of screening and evaluation practices. Many of the children who lost their ASD diagnosis were given a new diagnosis of ADHD, which the study says may be the result of overlapping symptoms. Over-diagnosis may also be because of the greater availability of resources for treatment of children with an ASD diagnosis or because children are given the diagnosis as a precautionary measure pending a more thorough assessment.

Significantly the study also found that, ‘Only 21% of children with a lost diagnosis (or less than 3% of all school-aged Children with Special Health Care Needs ever diagnosed with ASD) were said to have lost it due to treatment or maturity. The true rate of recovery may be even smaller if some of these children were incorrectly thought by their parents or doctors to have lost their ASD because they now have well-developed coping skills and other strengths.’

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  1. The neurologist said Ben had a “severe communication disorder” that would probably be manifested in a learning disability later on when he was age 3. At age 5, testing in Topeka placed him in the “Educationally Autistic” category, which allowed him to get speech and OT services from the public school. His later pediatrician refused to label him autistic, but ADHD. By the time he was ready for college, I decided to get him tested, so he could get accommodations, which he did, in math (time and one half) and writing (double time). He is Learning Disabled….

    It was more lucrative for the school to give him the label of autism. I doubt that a label of LD would have gotten him the Speech, OT, and Resource services that he got. We label kids, so that the federal government is mandated to cover services. Schools always choose the highest paying disability area so that services are most likely to be covered, and they may only choose ONE. Thus, a student I had who was cortically blind, having major physical disabilities because of her CP which took away her ability to talk, walk, or eat normally (she was tube feed), had a label of “blindness”, because it paid the most for services.

    THAT is why the label was stuck on so many kids. For federal funding of disability services…which is kind of sad.

    The saddest thing, to me, is my son was given a label of autism, which is based on behavior alone, making it a “behavioral” label. He was treated for his “maladaptive behavior”, but never treated for his learning disabilities. So, we can blame the child, but not have to teach them the way they learn.

    I may sound bitter, but I’m not. Like so many kids with learning disabilities, like Dyslexia (20% of kids), or Dyscalculia (5-9% of kids, and one of his 2 labels) and Dysgraphia (not sure of percentages, but often accompanies the other two, and was his other label), my son learned ways to compensate. His verbal IQ of 126 allows him to argue why his way is best….effectively. It is common for LD kids to have very high verbal IQ’s. The Lord provides…

    What doesn’t kill you makes you stronger, and many LD kids will say that adult life is easy compared to the torture that was school.

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