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Something's Strange: Treatment of Developmental Disorders in Japan (5) Fixed Diagnosis

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In this series "Something's Strange: Treatment of Developmental Disorders in Japan," what I have written about developmental disorders in Japan so far might seem to be a succession of complaints. I thought I was approaching the end of what I want to say, but I am not there yet. Here I would like to write about what is called "fixed diagnosis."

A child who had been diagnosed at the age of two with autism spectrum disorder at another hospital came to me for a second opinion and an examination. This diagnosis was based on such symptoms as delayed speaking skills and obsessive interests. After that, however, language development picked up, and the obsessive interests disappeared. Upon entering kindergarten, the child's development appeared to be no different from the typical development. As a result, a request was made to change the diagnosis of autistic spectrum disorder,to a diagnosis of typical development at the other hospital. The doctor, however, had rejected this patient's request, noting that it was not possible to change the diagnosis once it was written in the records. I examined the child, and certainly, I did not see any behavioral characteristics that suggested autistic spectrum disorder. I made a diagnosis of typical development.

What are your thoughts on what you have read so far? I imagine that both non-specialists and specialists in developmental disorders will probably conclude that the doctor who did not change the diagnosis of autism was correct.

That is because developmental disorders including autism spectrum disorder are generally known to be congenital disorders that are genetically influenced and basically incurable. There are specialists who dislike the word "disorder" and explain a developmental disorder as an "irregularity of individuality," but that is because they presume that individuality is something that the person possesses which does not change.

However, I am almost completely convinced that such assumptions are wrong. There are several reasons. As developmental disorders include three different types of disorders: autistic spectrum disorder, attention-deficit hyperactivity disorder, and learning disorder, I will explain each disorder in order to avoid confusion.

Let me first address autistic spectrum disorder, the starting point of this discussion. In my view, this child who was diagnosed with autism spectrum disorder and sought a second opinion from me is not one of those cases of over-diagnosis, as I have mentioned in my previous blog by doctors who simply followed a checklist and neglected to give an adequate examination or ask questions that dealt with the child's behavior. Why then did the symptoms of autistic spectrum disorder disappear? Autism spectrum disorder is a disability that affects social skills and emotional control. Although a newborn infant might develop autistic spectrum disorder later, it is not possible to diagnose the condition at birth. Neither an infant showing typical development nor an infant who develops autistic spectrum disorder is equipped with the social skills or ability to control emotions as a newborn, so it is not possible to make a distinction, to say nothing of attempting a diagnosis. In children showing typical development, we see that social skills and emotional control are developed through the interaction between brain development and the environment. However, children with autistic spectrum disorder do not fully develop these social skills and emotional control. It becomes possible to make a diagnosis when the difference becomes clearly apparent in early childhood.

Regarding the child mentioned above who showed symptoms of autistic spectrum disorder at the age of two, although the child developed social skills and emotional control, it is possible to consider the development was slow. The child's development caught up later. This is the logical explanation to why the symptoms of autism spectrum disorder disappeared. In my view, this is the main reason for discrediting the common view of autistic spectrum disorder (one developmental disorder) that considers it to be an incurable developmental disorder in every case.

I began this article by introducing the diagnosis of a two-year child made by another physician, but in a follow-up examination of children whom I had diagnosed as having typical autistic spectrum disorder between two and three years of age, there were three cases in which the symptoms had completely disappeared before the children entered school at the age of five. I was very confused by this result, and the experience convinced me that autistic spectrum disorder could be "cured."

I thought I was the only one to have experienced something like this, but I have recently found some strong support. It was something I read in a textbook written by Dr. Simon Baron-Cohen, a British clinical psychologist who is a leading authority on autism and Asperger syndrome research. In a section subtitled "Can the diagnosis be removed later?," he clearly states that there is no reason for a person who has been diagnosed with a condition to need the diagnosis for the rest of his or her life. Furthermore, the diagnosis is based on symptoms that are present at a certain time, and when these symptoms, which constitute the basis for the diagnosis, subside or no longer cause difficulties, the diagnosis becomes unnecessary. He concludes by noting that this is quite possible in cases of Asperger's syndrome and high-functioning autism among autistic spectrum disorders.

So why is Dr. Baron-Cohen able to declare that it is possible? That is deeply related to the fact that the term "autism" was changed to "autistic spectrum disorder."

In Dr. Baron-Cohen's book, the conventional view of autism is shown as follows.

chief2_01_73_01.jpg

Source: Baron-Cohen, S.(2008) p.21


When the morbidity rate of autism was still said to be 0.04%, autism was considered to be a separate disability that was not continuous with normalcy. Note the gap between autism and normalcy in the figure.

Next, the current view of autism is shown as follows.

chief2_01_73_02.jpg

Source: Baron-Cohen, S.(2008) p.25

The biggest difference between the two graphs is that in the latter one, the "normal" population, Asperger syndrome (AS) and autism are all located on a continuum, and this continuum is called the autistic spectrum. Without any clear breaks, depending on the severity of symptoms, it is possible for the diagnosis to change from autism to Asperger syndrome or from Asperger syndrome to a "normal" diagnosis.

The biggest difference between the two graphs is that in the latter one, the "normal" population, Asperger syndrome (AS) and autism are all located on a continuum, and this continuum is called the autistic spectrum. Without any clear breaks, depending on the severity of symptoms, it is possible for the diagnosis to change from autism to Asperger syndrome or from Asperger syndrome to a "normal" diagnosis.

The subtitle of this blog entry, "Fixed Diagnosis," refers to the view of the doctor in the introduction who made a single diagnosis and refused to change it, and it is meant to underscore the continued adherence to this view of autism.

The next topic will be attention-deficit/hyperactivity disorder (ADHD).


    Reference
  • Baron-Cohen, S., Autism and Asperger Syndrome, Oxford University Press, 2008.
Profile

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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