Monday, 26 May 2014

Autism Diagnosis is ZIP code / Postcode Lottery – And Why over Diagnosis is Bad

Most readers of this blog are from the US, but in much of the rest of the world the diagnosis of autism is very much rarer.  Why is that?  And does it matter?

I came across a perfect example of this recently.  A friend who lived in the Netherlands (north Europe), just relocated, back to the south of Europe.  In the Netherlands, his daughter was diagnosed with autism; the father, being a native of southern Europe, did not like this at all.  “On what basis do you say this?”, he asked the psychiatrist.  The psychiatrist would not discuss the diagnosis, other than to say that according to the American DSM, his daughter has autism.

A few months later, the father takes his daughter for an assessment back home in southern Europe.  There he was told that it was nonsense to say the girl is autistic, she just has some mild obsessive compulsive behaviour.  The father now feels much better, the daughter feels no worse.

We were discussing my Polypill for autism and comparing symptoms.  Difficulty with expressive/receptive language? No.  Stereotypy? No. Did his daughter have anxiety? No.  Was she ever hyperactive? No.  Trouble with sleep? No.  Sensory issues? No.
And according to the US DSM this counts as autism?

It is not just autism that appears over-diagnosed, just look at ADHD.  In the US 7% of children have been told they have Attention Deficit Hyperactivity Disorder.  In the UK it is about 2.5%.

Some kids displaying ADHD have a biological dysfunction, but plenty of others have a purely behavioral condition.  In those cases, throw out the PlayStation, Xbox, iPad, smart phone and disconnect from Facebook and then say farewell to ADHD.

Why Over-Diagnose? 

Many years ago, our speech therapist told us that it was all about money.  In the US, if you get an autism diagnosis you get free services, so of course the parents want the diagnosis and so do the providers of the services.  At the time, I was very sceptical, but now I think she has hit the nail on the head. 

In countries where there are no free services and also attitudes to special needs kids are not so nice, the last thing a parent wants is an autism diagnosis.  So unless the kid really is deeply affected, he will never get an autism diagnosis.  This is a much better approach in my opinion.

Why is Over-Diagnosis Bad?

It is only a bad thing if you want to treat autism and perhaps, one day, even “cure” it.  By mixing in all sorts of different, often much milder, conditions you just end up will a group of people who share a pervasive development disorder of any origin, and ranging from very mild to very severe.  It tells you nothing else.

Worse still, sometimes the origin is known.  For example, if the child has a diagnosed immune disorder, but also has some odd behaviours, why call it autism?  Call it by the name of the immune disorder and treat the child for the immune disorder.

Medical science can only find treatments that work for a specific biological dysfunction, and only if they are proved to be effective in lengthy clinical trials.  Clinical trials for autism are usually based on selecting participants based on diagnosis using DSM (itself based on behaviour). 

To-date pretty much every advanced clinical trial for autism has failed.  Should this come as a surprise?  Not at all.  All the test subjects needed to be suffering from the same biological (not behavioural) disorder.

You could select participants by DSM and then screen them all by an intelligent scale, like CARS (Childhood Autism Rating Scale), then just take the kids with more serious issues.  The clever next step is to screen the participants for biomarkers, of what target of the treatment is.  The only trial I see doing this is Curemark with CM-AT.  The wizz kids from MIT do not do it, and their trials fail.

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