Book Review: Very Late Diagnosis of Asperger Syndrome

I have a great interest in Autism, for two main reasons. Many of our talented candidates at Evenbreak are on the Autistic Spectrum and I am keen to learn as much as I can to help promote them to employers. And also my daughter is a teacher and runs a base for children on the spectrum. However, the children that she teaches are lucky enough to have received an early diagnosis so that they can be taught using teaching methods which are more appropriate for them (often quite different from “neuro-typical” children).

My view has been that Autism is more a different way of thinking about and seeing the world, rather than an impairment. It becomes disabling (using the social model) when society can’t adapt easily to people who think differently. And often “differently” is confused with “inferior”. A number of employers have asked me to specifically target candidates on the Autism spectrum for some jobs, so clearly in some circumstances being Autistic is a positive advantage.

But what happens if your Autism isn’t diagnosed until you are well into adulthood? This happened to Philip Wylie, who wasn’t officially diagnosed until the age of 52. He found this “a painful and traumatic experience”, although in some ways it was also a relief, and answered many questions, making more sense of his life. One of the coping strategies he used was to research Autism, and particularly the experiences of people like him, who had received their diagnosis late in life. I’m grateful that he chose this as one of his strategies, because it resulted in a book, “Very Late Diagnosis of Asperger Syndrome” which makes fascinating and enlightening reading.

For many years, Autism was seen as something which needed “curing” – as if it were some kind of disease. Also, it wasn’t recognised as a condition until relatively recently, so there are many adults who wouldn’t have been diagnosed at school or in their childhood. In his introduction Philip says, “Although our strengths are many and we have a lot to offer society, the world at large has a long way to go in accepting and understanding neurodiversity.” (p. 27)

One of the many challenges of living in a world which is suspicious of difference is to try to appear “normal” – in other words, pretend to be like and behave like the people around you. Many autistic adults do this for decades before finally understanding themselves. Wylie states “pretending to be someone else damages our self-esteem and mental health because we feel unable to honour and express ourselves truthfully.” (p. 33)

The book talks a lot about the dangers of late diagnosis. People respond differently, some feeling a sense of relief that there is an explanation for why they had always felt different from others, and some can be traumatised, leading to various forms of mental ill health. Even those who feel a sense of relief can feel cheated out of all the years when they could and should have known. The discrimination faced by autistic people in the workplace is also addressed. As Wylie states, “what is the advantage of being ‘gifted’ if we are unable to apply these gifts and most people are not even aware of their existence?” (p. 43)

One of the benefits of diagnosis is that it “may bring awareness of the ‘social model’  of disability, which states that an adverse environment is a major cause of mental ill-health among autistic people. Again, this knowledge enables us to forgive ourselves, knowing that any secondary mental disorders (such as anxiety or depression) are caused primarily by external influences.” (p.94)

One concern expressed by Wylie is that many charities and social enterprises which are set up to help and support people on the spectrum do not employ autistic people themselves – what kind of message does that send out? As he points out, “Employers benefit massively by treating autistic people as healthy human beings and adjusting the work environment to enable us to be fully productive.” (p. 124).

Enlightened employers understand that “Typical positive traits of autistic people are the ability to focus on a single task for a long time, above-average intelligence, adept systemisation skills, goal orientation, ability to see ‘the wood for the trees’, abstract thinking ability and integrity.” (p.124)

The book gives useful advice to employers considering employing autistic people, and also to autistic people looking for work. There is also a useful “self-diagnosis” tool to test how many “typical” autistic traits someone might have.

I found this book extremely interesting, and a great mixture of research and personal experience – not just the author’s, but also many of the people he has spoken to whilst conducting his research. I would recommend this book highly to any employer, to any adult who thinks they may be autistic, and to any adult who is supporting someone who may be autistic.

It’s a fascinating read – find it here.

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One thought on “Book Review: Very Late Diagnosis of Asperger Syndrome

  1. Interesting book more awareness of Aspergers and cormobid difficulties. You can Aspergers dyslexic and dyspraxia and other neuro diverse issues. Also danger that general public see all ASD as computer experts that is only one aspect and not ever ASD person is excellent on a PC. SAP & inspecialisterene concentrate on soft ware engineering solely which leaves a big gap in diversity of the jobs that are suitable for ASD job seekers


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