When Doctors Decide Your Disease Doesn't Actually Exist

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Since Kanner described 120 cases, autism has increased enormously in prevalence. There is a lively and often bitter controversy over whether this increase in prevalence reflects a real increase – there really are more children with autism – or whether doctors are more aware of autism as a diagnosis and are therefore simply making up for missed diagnoses in the past.

There is another possibility: the criteria for diagnosis have become much looser so that more children fulfil them. The latest edition of the Diagnostic and Statistical Manual of the American Psychiatric Association tries to narrow the criteria again, but not everyone is pleased by this attempt. People with children previously diagnosed as autistic are afraid that, if their children are dis-diagnosed, as it were, they will lose their entitlement to medical or psychological assistance. The children will no longer be deemed disabled, and there are advantages to being officially recognized as such.

Asperger’s syndrome is eliminated from the new Manual as a separate category and this will not please everyone either. People come to like their diagnoses, or at least to feel that they have explanatory power for the dissatisfactions in their lives. In some cases a diagnosis even give meaning to those lives: they devote themselves to associations that care for or (more usually) campaign politically for other people with the diagnosis. If much of your life you have been told that you have a condition which has become the focus of your existence, only to be told years later that no such condition exists, you are bound to feel a sense of loss or even of bereavement.

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