How it feels to be diagnosed with autism later in life

“He is wired differently to you and me, this child of mine. He doesn’t like loud noises, or dark spaces, or strangers touching his head”. These are the first lines from a poem a mother penned about her son 11-year-old son who has Asperger’s syndrome.

Sophie Billington goes on to explain how her son Tristan’s brain works differently: “He can see in an instant the pattern, the layout, the solution to a puzzle”, but that “the world judges” and “sees only the outbursts and over-reactions”. It seems the poem struck a chord – going viral after being posted on Facebook.

Although autism is predominantly diagnosed in childhood, increasing numbers of adults are finding out that they too have autism. This issue, of later life diagnosis, was brought to light recently after nature photographer and TV presenter, Chris Packham, went public with his experiences.

About 1% of the adult population has been diagnosed as on the autism spectrum – with more people diagnosed with autism than ever before. And yet, generally, the focus on who has autism is still mostly on infants, children and young adults.

This is despite the fact that autism can be defined as a lifelong neurodevelopmental disorder – characterised by differences in social communication and interaction with people and wider society – making it very much a label for people of all ages.

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  • I'm 59. It raised its head when the A word came up with my niece and my mother raised that same word about how it had been with me as a child. But the literature (in 1983 upset me. I did not have a job at the the time, there was not much for graduates when I graduated either and my family had no faith. I could not have borne the idea that I might be disabled in a significant way, I could never have lived with myself if it were true.

    I have worked for 20 years abroad now, not always plain sailing, so most of those doubts are gone now. But there is a lot more stigma here in regard to anything that looks like disability, mental illness so there is no way I would seek a diagnosis here, and what would it do for me now?

    It would have been a lot more useful than all the misinformation that abounded when I was a child. It's too late. I think now. 

    My niece has a son now who definitely does have an autism diagnosis. I do get students who have a definite autism diagnosis. Some who I suspect might have this as an inner challenge. 

    So things go round full circle.

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