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Autism Coach

Politics of Diagnostic Codes

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Congratulations - You No Longer have an Autism Spectrum Disorder - Now the Bad News


February 28, 2014. New diagnosis guidelines for autism spectrum disorder (ASD) issued by the American Psychiatric Association (APA) may reduce by almost one third the total number of people being diagnosed, according to new research from Columbia University School of Nursing published in the Journal of Autism and Developmental Disorders. The guidelines, released in May 2013 and the first major update to psychiatric diagnosis criteria in almost two decades, may leave thousands of developmentally delayed children each year without the ASD diagnosis they need to qualify for social services, medical benefits and educational support.


Recently, the DSM-5, which provides diagnostic codes for psychiatric disorders was revised to eliminate two primary diagnoses within the autism spectrum Asperger’s Syndrome and PDD-NOS, and the definitition of autism itself was narrowed, effectively reducing the number of people diagnosed with autism by 25-30%, possibly resulting in the cutting off of people from services and skewing statistics on the incidence of autism.


The American Psychiatric Association’s Diagnostic and Statistical health Manual of Mental Disorders (DSM), the “psychiatrists bible”, is used by insurance companies and public education to determine services provided and pharmaceutical drugs recommended. Not surprisingly, the pharmaceutical and insurance companies along with psychiatrists, have a strong influence behind the scenes in the crafting of this manual for their profit and protection. Create a condition or broaden the diagnosis so more people receive this diagnosis, and you can sell a lot of drugs. Remove a condition and you can abrogate yourself from the responsibility of having caused this condition or having to pay for its treatment.


The most recent revisions to version 5 of this manual, the DSM-5, eliminate autism diagnoses of Asperger’s Syndrome, PDD-NOS, and restrict the criteria for an actual Autism diagnosis so that over 30% of individuals currently diagnosed with autism spectrum disorders will lose diganosis. Suddenly there is a lot less money that needs to be spent on treatment and it becomes harder to track the actual impact of immunizations, chemicals and more on autism because the definition suddenly changes. A layer of obfuscation of data from research has been put in place with this rebranding of diagnostic labels.


A team led by Kristine M. Kulage, MA, MPH, director of the Office of Scholarship and Research Development at Columbia Nursing, conducted a systematic literature review and meta-analysis to determine the effect of changes to the Diagnostic and Statistical Manual of Mental Disorders (DSM), the APA’s classification tool for psychiatric conditions, on diagnosis of individuals with ASD. The study found a statistically significant decrease in ASD diagnosis of 31 percent using the new manual, DSM-5, compared with the number of cases of ASD that would have been identified under the previous version of the manual, DSM-IV-TR.


The DSM-5 also added a new category called social communication disorder (SCD) to diagnose individuals who have verbal and nonverbal communication impairments but lack other attributes associated with autism. Some individuals diagnosed with PDD-NOS under the old manual would be identified as individuals with SCD under DSM-5, according to the APA. Under DSM-5, there was a statistically significant decrease in AD diagnosis of 22 percent, compared with the fourth edition of the manual, the meta-analysis found. There was also a statistically significant decrease of 70 percent in diagnosis of PDD-NOS. While diagnosis of Asperger’s also declined under DSM-5, the reduction was not statistically significant. In addition, the study found that some individuals who no longer met the criteria for an ASD diagnosis under DSM-5 would also fail to meet the criteria for SCD.


“We are potentially going to lose diagnosis and treatment for some of the most vulnerable kids who have developmental delays,” says Kulage. “In many instances, children require a diagnosis of ASD to receive medical benefits, educational support and social services.”


Psychiatry and psychology have been traditionally been “soft” sciences, with diagnoses being based not upon medical tests but the opinions of psychiatrists or psychologists, which is a profitable monopoly and confers a certain amount of power upon these professionals. If people have problems and want treatment for problems or insurance coverage, they have to pay quite a bit of money to get the diagnoses from a psychiatrist or psychologist before their child can receive services in schools or have them paid for by insurance such as speech therapy, occuational therapy, and applied behavioral analysis.


For example, a psychologist specializing in Asperger’s Syndrome who worked with my son, and then became quite unprofessional in his conduct (he had mental heatlh issues himself) used his power as a weapon to under-diagnose him (gave him a diagnosis of PDD-NOS instead of High Functioning Autism or Asperger’s Syndrome) so it would be harder for him to receive services when he entered college - he was quite aware of the impact.


There is an interesting review of a new book that discusses the history of the DSM, entitled, ‘The Book of Woe: The DSM and the Unmaking of Psychiatry’ by Gary Greenberg. For a review of this book, please click here:

Below is some information on the history of the DSM provided in this book:

Homosexuality was listed as a “sociopathic personality disorder” when the DSM was first published in 1952, and remained so until 1973. “Doctors were paid to treat it, scientists to search for its causes and cures,” he writes in The Book of Woe: The DSM and the Unmaking of Psychiatry. “Gay people themselves underwent countless therapies including electric shocks, years on the couch, behaviour modification and surrogate sex.”


Following the release of the first DSM, the inventor of computers, Alan Turing, the man who helped the Allies win WWII by crackng the German military’s secret codes, and was the inventor of the first computer, a homosexual, was convicted of 'gross indecency with a male' in March 1952. He was sentenced to chemical castration - injections of the female hormone oestrogen, designed to suppress his homosexuality. As a consequence, on June 7, 1954, just two weeks before his 42nd birthday, the softly-spoken genius killed himself by taking a bite out of an apple that he had dipped in cyanide and committed suicde.


Greenberg’s book tracks in painstaking detail how the DSM’s decisions have created “false epidemics” of over-diagnosis and over-treatment. In 1994, for example, the diagnostic threshold for bipolar disorder was lowered to cover people without full-blown mania (instead, they have elevated moods that doctors call hypomania, but which Greenberg describes as exuberance). As a result, bipolar diagnoses soared, as did prescriptions for mood stabilisers and antipsychotic drugs, which in the US were for the first time being advertised directly to the public. “Suddenly, everyone and his brother was bipolar,” says Greenberg. About six million people are now diagnosed as bipolar in the US, and in the UK, it’s one in 100.


He also describes how a loophole in the DSM criteria was exploited “by one of the few real bad guys in psychiatry” to establish a juvenile version of the disorder, without any solid evidence. This was at a time, coincidentally, when powerful antipsychotics were being rebranded as mood stabilisers. As a result, diagnoses of child bipolar illness increased 40-fold over a decade. “In 2007 alone half a million children, 20,000 of them under six, were prescribed drugs that a decade before would have been prescribed only in the most dire circumstances,” says Greenberg. 

The side effects of some of the drug cocktails children were prescribed included obesity, diabetes and suicidal thoughts.

In an attempt to reduce bipolar diagnoses in children, DSM-5 has introduced a new illness, called Disruptive Mood Dysregulation Disorder (DMDD), to cover intensive temper tantrums. But this too is proving controversial, with fears that it may capture some children who may be volatile, but who are not ill. “Clinical trials of treatments for DMDD are probably already under way and may well lead to another treatment epidemic,” he says.

A different tale concerns Asperger’s syndrome, which was first included by the DSM in 1994. Greenberg explains that this had some beneficial effects. “It may not have been a disease but calling it one gave a hitherto neglected group of children access to support and educational services, as well as a sense of identity and community.” The result though, was that from a worldwide prevalence of four in 10,000 for autism disorders (including Asperger’s) in 1988, 20 years later this was one in 88. Alarmed at diagnostic rates “getting out of hand”, DSM-5 has removed Asperger’s, replacing it with the umbrella term Autistic Spectrum Disorders. This means a “higher threshold for diagnosis”, according to Greenberg, and possibly less access to educational benefits for future generations.