3.4 Experiencing diagnosis in adulthood

Nowadays it is not uncommon for an adult to receive a diagnosis after a younger family member has been diagnosed. John Peters was born in the 1940s. He is articulate and sociable, with an obsessive interest in collecting and hoarding objects. He was diagnosed with Asperger syndrome around two decades ago, after specialists assessing his two grandchildren, Acis and Harry, noticed his unusual behaviour. His Asperger syndrome diagnosis implies that he showed no delay in language development as an infant. John’s teenage behaviour was probably seen as eccentric, but in the period when he was growing up, a profile of skills and behaviour like his did not match the symptoms of autism as then described, and Asperger syndrome was not recognised.

Activity 4 On being diagnosed as an adult

Timing: Allow about 10 minutes

Watch these clips about John Peters. Note one positive and one negative feeling that John experienced on being diagnosed.

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NARRATOR:

Four years ago, John was diagnosed with Asperger's syndrome, which is an autistic spectrum disorder. After years of emotional problems, at the age of 56, when John had become a grandfather, he finally discovered the real cause of his difficulties.

JOHN PETERS:

It's not an excuse for what happened to me or what I've done or what I've been or what people think I am. It's more of a reason for me, you know? The reason why I was different when I was a kid, why I felt different, why I felt a lot of-- alone. I'd play on my own rather than be with other people, you know? They'd call them the local geek these days, I suppose. But that was basically it.

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SAMANTHA PETERS:

When Acis was diagnosed, my father was actually in the room when the diagnosis was made. And the professor who made the diagnosis actually pointed out to me that Dad was actually behaving in rather an odd manner, because the multidisciplinary team were all sitting at one end of the room talking to me and talking to Acis, and my father was sitting, rocking in a chair, next to the door, whistling and singing to himself as though he really didn't have a care in the world. And at that point, I realised perhaps there might have been a connection between what my children heard and the way in which my father had behaved for the biggest part of my life.

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JOHN PETERS:

I felt really, really bad for Acis and then Harry as well on top, dear God, that this-- you know. I carry the genes.

And through my daughter, they don't show in women usually. Or if they do, it's usually very hard to diagnose, so they say. And guilt, I think. Bloody black raging, suicidal guilt, you know, for not knowing.

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Discussion

John's diagnosis has helped him to explain feeling different, and other problems that he has suffered with all his life. However, he also refers to a deep sense of guilt. This may be partly because he now realises that he was difficult to live with, and also because he has passed ‘autism genes’ to his grandchildren. He feels that if his own diagnosis had been known, Acis and Harry’s difficulties would have been explained earlier.