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What is happening to autism diagnoses – and why?

Lena Nylander's latest blog entry

[Posted on 4 February, 2020 by Lena Nylander]

When I first started taking an interest in autism, in 1992, it was largely an unknown concept. Granted, there were “islands” of expertise scattered across the field of child and adolescent psychiatry, for example around Christopher Gillberg in Gothenburg and Lorna Wing in London. However, institutions aimed at helping adults – including adult psychiatric services – did not concern themselves with autism. Diagnostic manuals back then included “infantile autism” (the DSM-III from 1980), and several other autism spectrum diagnoses (e.g. Asperger’s syndrome) were introduced in the ICD-10 (in 1993) and the DSM-IV (in 1994). Autism spectrum disorders were still only considered a part of child psychiatry, and not something that adult psychiatric services needed to bother with. The general public knew virtually nothing about autism, which naturally led to many unfortunate misunderstandings – or indeed worse – for people with autism and those around them. Relevant research was also in short supply, so it didn’t take very long to read up on the available literature and identify the people who actually knew anything on the subject.

As you probably know, this has all changed massively over the last 25 or so years. I believe it all started with the gradual realisation that autism could affect people without intellectual disability or severe language problems, i.e. when the concept of Asperger’s syndrome became more widespread. When this happened, it became apparent that a lot of adults with autism (or Asperger’s syndrome) might have gone undiagnosed in childhood, which in turn led many people to seek out adult psychiatric services for autism spectrum disorder assessment. The number of suspected cases of autism spectrum disorder skyrocketed in child and adolescent psychiatric services as well. Films, books and magazine articles helped bring Asperger’s syndrome and autism into the public eye, and the terms started being used by non-professionals – sometimes even to describe quirks and behaviours unrelated or unspecific to autism. Many believed that being diagnosed with Asperger’s syndrome was a sign of not only normal but even genius-level intelligence (which in fact is only very rarely the case).

All of these factors, along with the fact that people without intellectual disability virtually need an autism diagnosis to get supportive measures through the Act concerning Support and Service for Persons with Certain Functional Impairments, have combined to create a meteoric rise in the number of autism spectrum diagnoses, among both children and adults. There has even been talk of an “autism epidemic”, while the term autism has become so popularised that most people have heard about it or believe they know what it entails. Of course, this development has mostly been positive, and hopefully we will only get better and better at embracing, understanding and including people with autism in our society and everyday lives.

And yet, there is still the issue of how long this can go on before autism diagnoses ultimately become so watered down that they no longer even mean anything anymore. When something becomes too common it suddenly ceases to be something worth paying attention to. If there’s virtually no difference between having autism and not having it, why should people with autism get any special treatment? Why would they need supportive measures and tailored efforts or indeed even a diagnosis if they are in fact more or less the same as those with other diagnoses or no diagnosis at all? The diagnostic criteria specify that it must be a lasting impairment, but perhaps this isn’t given as much weight anymore. On the other hand, we might be giving too much weight to social shortcomings, especially the kind we all tend to exhibit if and when we are feeling bad. A few years ago, one in twenty teenage boys in Stockholm had an autism diagnosis – is that reasonable? And what are the consequences for these individuals and society at large? Many adults have contacted me in recent years to say that they have been misdiagnosed with Asperger’s syndrome – causing them a number of problems – and that they wish to be “undiagnosed”.

I’m afraid that’s where we’re heading at the moment: a tendency to over-diagnose autism, which is detrimental to all the individuals with autism who truly are in major need of support (1). New studies have shown that fewer and fewer symptoms are required to be diagnosed with autism in Sweden (2), and that international autism research is focusing more and more on comparing increasingly similar groups (3), which in turn begs the question of what the results actually mean. We need to ask ourselves what an autism diagnosis should entail, and why adult psychiatrists so often suspect autism without adequate cause, even when other diagnoses would be more accurate and ultimately provide the patient with better treatment.

Bejerot S. Ingen tjänar på att det går inflation i autismspektrumbegreppet. Läkartidningen 2010;47:2978-2979

Arvidsson O, Gillberg C, Lichtenstein P, Lundström S. Secular changes in the symptom level of clinically diagnosed autism. J Child Psychol Psychiatry 2018;59(7):717-720

Rödgaard EM et al. Temporal changes in effect sizes of studies comparing individuals with and without autism. A meta-analysis. JAMA Psychiatry 2019 doi:10.1001/jamapsychiatry.2019.195

This is a blog. The purpose of the blog is to provide information and raise awareness concerning important issues. All views and opinions expressed are those of the writer and not necessarily shared by the GNC.