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Something's Strange: Treatment of Developmental Disorders in Japan (2) Overdiagnosis and Overtreatment

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In my previous post, I wrote about the problems associated with the ADHD diagnosis guideline used in Japan that can be interpreted as if it recommends unnecessary examinations.

Here I would like to address the question of whether autism spectrum disorder, which is a developmental disability, is overdiagnosed and overtreated.

A number of children who visit me as outpatients have been "diagnosed with autism spectrum." Although they have been diagnosed, most come to me because they want to know what they should be careful about in daily life, whether they will be able to attend a regular class at elementary school, and if they really have autism spectrum disorder. Of course, in many cases, the diagnosis made by the other hospital is confirmed, but nearly half of the children do not appear to have autism spectrum disorder.

The diagnosis of autism spectrum disorder is often based on symptoms that are associated with autism such as "difficulty following group instructions," "excessive adherence to routines," and "language impairment." Some children are diagnosed as within the range of autism spectrum disorder based on behavioral screening, for example, the Modified Checklist for Autism in Toddlers (M-CHAT).

As stated in my previous post, there is no examination to verify the diagnosis of autism spectrum disorder, and this is similar to the case of attention deficit hyperactivity disorder (ADHD). Like ADHD, autism spectrum disorder is also diagnosed on the basis of behavioral characteristics.

The children who visit me have been diagnosed on the basis of difficulty following group instructions, and having obsessions. However, when talking to them one-on-one, they immediately understand my intentions and their behavior fully demonstrates an ability to relate socially to others through facial expressions and other cues. When asked about their preferred fixated interests, they cite actions characterized by a certain way of playing or playing only with an object such as cars, but this type of fixation is also seen in children of typical development. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM), which is used for the diagnosis of autistic spectrum disorder, fixations or fixated interests are defined as "highly restricted, fixated interests that are abnormal in intensity or focus." This does not mean that children should be immediately diagnosed with autism spectrum disorder because they demonstrate a strong fixation on something in particular.

What about children who appear to have autism spectrum disorder according to screening rubrics such as the M-CHAT? The M-CHAT is a convenient checklist that identifies the risk of autism spectrum disorder in toddlers at the age of one and a half years. Studies indicate that although it is possible to identify the risk early, a positive result does not necessarily mean that the child will definitely develop autism spectrum disorder later.

Children who do not appear to me to have autism spectrum disorder based on some aspect of their behavior or according to the checklist results alone are followed up and receive ongoing checkups thereafter, and most of them do not experience difficulty later in kindergarten or classes in regular schools.

How did this situation arise? I don't have the answer either. I even start to wonder if I was blinded for a second and had missed something.

This was a worry that was far-reaching. As mentioned in the previous blog, "Something's Strange: Inclusive Education in Japan," when diagnosed with a developmental disorder such as autism spectrum disorder, children are sent to special support or "exclusive" classes, and do not receive an inclusive education. Once they enter special needs classes, it is difficult to return to regular classes, and I shudder when I think a single diagnosis could completely change the child's life.

I have always been concerned about unnecessary examinations and overdiagnosis, but I have recently added overtreatment to these concerns.

Of course, since treatment is carried on the basis of overdiagnosis, overdiagnosis leads to overtreatment. In this case, however, what concerns me about overtreatment has some slightly different aspects.

Something became clear to me in the course of witnessing the development of children who sought consultation at a center for developmental support where I worked. Looking at the medical questionnaires used by the psychology counselors at the center and the treatment process (diagnosis and treatment) at a clinic that specialized in developmental disorders, I was astonished by what I saw. A number of children, not just one, were referred to the clinic with nearly the same diagnosis and prescribed medication. The diagnoses tended to be autism spectrum, Asperger's syndrome, and ADHD. Why was I surprised by these diagnoses? In some cases, autism spectrum and ADHD overlap, so there is nothing strange about both terms being used. The problem is that autism spectrum and Asperger's syndrome were used together, alongside each other. As some may know, DSM revised the diagnosis categories in 2013, and as a result, the term "Asperger's Syndrome" is no longer used and it has become included in autism spectrum. At first, when I saw one child had been diagnosed with these two conditions, I thought it might be due to carelessness, but then I realized that a number of children at the same hospital had been given these three diagnoses. This may not be a good comparison, but it seemed similar to recording a condition as both cerebrovascular disorder and brain infarction.

However, the medical histories of the children who were treated at this hospital were even more surprising because they indicate that three types of medicine, Concerta, Risperdal, and Abilify, were uniformly prescribed. Concerta is a medicine for ADHD while Risperdal and Abilify are often used for autism spectrum, and in most cases, one of them is used. It is not wrong to take them together, but at this clinic, all of the several people I counselled had received the same diagnosis (three) and had been prescribed these three medicines from the beginning. Furthermore, as I wrote in an earlier blog, several children appear to have been overdiagnosed and could not be diagnosed as having autism spectrum. In other words, they ended up taking medicine that was not necessary.

Unnecessary examinations, overdiagnosis, and then overtreatment--I would like to think that what I came across in the cases brought in from the two clinics were the exception, as I end my two-sequel blog posts which has turned out rather complaintive.

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sakakihara_2013.jpg Yoichi Sakakihara
M.D., Ph.D., Professor Emeritus, Ochanomizu University; Director of Child Research Net, Executive Advisor of Benesse Educational Research and Development Institute (BERD), President of Japanese Society of Child Science. Specializes in pediatric neurology, developmental neurology, in particular, treatment of Attention Deficit Hyperactivity Disorder (ADHD), Asperger's syndrome and other developmental disorders, and neuroscience. Born in 1951. Graduated from the Faculty of Medicine, the University of Tokyo in 1976 and taught as an instructor in the Department of the Pediatrics before working with Ochanomizu University.
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