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Anna’s story

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Anna talks about learning to accept life with her son who has Asperger syndrome.

Our youngest child, a son aged 19, has always been a bit more of a challenge than his older siblings. The ‘terrible twos’ started early and just never stopped! Although he has always been loving and intelligent, he is often impossible to understand! He was finally diagnosed with Asperger syndrome aged 13. In my work, I had previously encountered this disorder for a few hours a week, but had not been convinced that I was living with it!

With the diagnosis came understanding, patience and more chance to smile at life, for our son and for us. All seemed good. We now had an ‘official’ report we could give to his teachers, and eventually his personal tutor at university. Our son at 13 was thrilled that there was a ‘signpost’, a reason why he is as he is. He read a lot, asked a lot of questions, bought a lot of books, and understood himself better. School became a safer place than it had ever been before. More allowances were made.

We initially thought we would only tell people on a ‘need to know’ basis and I continued to feel this was a good plan, it’s just that more and more people seemed to ‘need to know’ – did I let people judge me as an over fussy mother or explain why I sometimes needed child care for my 16-year-old? Close friends knew that we’d make it to their party/meal/meeting if our son was having a good day. I had to work out who else to tell, and how much, and how much of that to tell our son!

The diagnosis launched me into a new world in which I had never planned to be a part

The diagnosis launched me into a new world in which I had never planned to be a part: educational psychologists, clinical psychologists, case conferences and support meetings, special needs staff and other people’s ignorance. I was surprised to find that, as parents, we had to instruct, inform, push, persuade, pressurise, encourage and enthuse most of the professionals who dealt with our son. On good days the whole family battled through together, laughing a lot and feeling proud of how far we’d come. On bad days I could still feel completely alone with a young man of almost six feet tall who could have a tantrum like a two-year-old for a reason I may not understand (though there would always be a reason!). The difficulties can be so subtle that you have to live with it to understand completely. Asperger syndrome tends to run in families, at different levels, so the lives of those affected can be complex.

During our journey through diagnosis I attended some Asperger syndrome conferences and ventured out publicly into the world of autism for the first time. Did I really want to embrace this ‘other’ way of life, alternative leisure pursuits and new friends? However, the letting go of earlier plans and accepting the reality, opened new doors, for me and for my son. As an adult he copes better than could ever have been expected and amazes us with what he is prepared to tackle. We are so proud of who he actually is and what he can achieve.

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