[Posted on 28 November, 2017 by Lena Nylander]
Over the last 20 years, many have been diagnosed with autism spectrum disorder in adulthood, primarily people without intellectual disability. For many, this diagnosis has had a positive effect and opened doors to both supportive measures and greater understanding. Over time, people have themselves also more and more frequently come to suspect that they have autism (or usually Asperger’s syndrome). Some have recognised descriptions of what typically characterises Asperger’s syndrome, and many have, for several years – perhaps even since childhood – felt odd or that they have had difficulty fitting in with different social contexts. Women especially have sometimes been said to be able to “mask” their autism or “act normal” so adeptly that no one even notices their autism or anything particularly abnormal at all. Asperger’s syndrome has, unlike most other psychiatric diagnoses, often been associated with superior attributes such as high intelligence and special competence in certain specific areas of interest. Myths like the one claiming that Einstein had Asperger’s syndrome have helped make autism spectrum diagnoses less stigmatised than many other diagnoses. Reducing and eliminating such stigma is of course very positive, but might also come with a price, namely that any diagnosis given all too lightly might end up so commonplace that it ceases to incite any interest, and perhaps even exist altogether.
But can a person with an autism spectrum disorder truly “act normal” in a convincing manner? After all, one of the most frequently cited characteristic cognitive difficulties of autism is limitations in Theory of Mind, which, among other things, hinders one’s ability to deceive and pretend, due to an inability to understand for example how other people perceive them. People with autism are usually terrible at deception, since they find it so difficult to quickly and flexibly adjust to the given context and other people generally, and struggle to figure out just what it is that others want to see and hear. Certainly there are people with autism who try to imitate their surroundings, but it does not tend to go particularly well – no one is “fooled” by it, and instead the person simply ends up making a strange and socially awkward impression, often at a huge investment of effort. Sometimes the person will still believe themselves to have managed to blend in smoothly, due to their poor ability to understand the surprise, bewilderment or other reactions from the people around them. Even women with autism, of well above average intelligence, tend to find it hard to pretend. One of them, diagnosed with autism soon after she turned 50, said that she had not realised her inability to understand. Note that the necessary diagnostic criteria for autism in DSM-5 include a lacking ability to understand relationships, which, along with the equally necessary shortcomings in non-verbal communication, tends to be very clear to people around the person in question.
Feeling different and left out is not a diagnostic criterion for autism, but rather a feeling that many can have, for many different reasons. Although one might certainly consider the DSM-5 diagnostic criteria for autism fairly general and a bit vague around the edges, they do certainly include certain things worth paying attention to. One such aspect is that the diagnostic criteria describe behaviours, i.e. things that are observable to the person’s surrounding environment – but not the person’s thoughts, feelings or inner experiences (with the possible exception of their understanding of relationships, but this incomprehension is reflected clearly in different behaviours anyway). In that sense, the autism diagnosis differentiates itself from many other psychiatric diagnoses. Those of us who work with psychiatric diagnostics are used to listening to our patients, but sometimes we forget to observe the patient’s behaviour and find out what the people around them think. In many cases this might not be necessary, but when it comes to autism, the diagnosis rests on observable phenomena – if a person has autism, people around them will notice them behaving differently, especially in larger social contexts. As such, questionnaires are rather questionable as diagnostic instruments when it comes to autism specifically.
There is also a certain idea that an autism diagnosis might provide an “explanation” for problems and suffering. However, a psychiatric diagnosis is not an underlying explanation of symptoms in the same way that high blood pressure can be the underlying explanation behind dizziness and headaches, but rather a term for a certain cluster of symptoms. Measurable biological markers are still far off in the field of psychiatry – and the day they are discovered, we might have to overhaul our entire current diagnostic perspective.
All of this being said, I do not mean to diminish the significance, in at least some cases, of having been diagnosed with autism in adulthood and subsequently – hopefully – getting tailored supportive measures to facilitate one’s continued everyday life. But I do want to warn about over-diagnosing and banalisation of autism, two things that will not benefit anyone. There are also cases where autism diagnoses, often given without much care or consideration, have brought about nothing but detrimental effects and increased suffering. However, for reasons that can be plainly explained, these cases rarely get much attention. One exception to this rule is the brave Odette, who was portrayed in the documentary Diagnosen (The Diagnosis) on SVT2 (one of the two Swedish public service television stations). Ironically, these days it seems to be harder for a person to get rid of an unwelcome autism diagnosis than it is to get one.