Life on the Autism spectrum

Feelings about being diagnosed with autism

“I’d rather be aspie than something unknown”
The age at which people are diagnosed with autism varies. Some people we spoke with were diagnosed as children, others as adults.  Feelings about diagnosis also varied considerably; some were very happy and reassured to receive a diagnosis while others were upset, shocked or surprised.

People diagnosed in childhood often remembered little about the diagnosis.

Most of the people we talked with felt relieved to get the diagnosis of autism or Asperger syndrome. Mary said it was reassuring to have “validation” from health professionals, Oliver said the diagnosis gave him “more definition” while Tim said it gave him “peace of mind”. Some people thought that not getting a diagnosis would leave them worrying about what was wrong with them. Russell found that people with autism share a lot of intellectual topics of interest.

As one person described; “I am like different, but in a good way” while Debbie said that day she got the diagnosis as the best day of her and her mother’s lives.

For many people diagnosed with Asperger syndrome, this was not a negative label.
A few people found the diagnosis difficult to accept or understand initially and a few were not relieved to be diagnosed.  Russell said that getting the diagnosis, didn’t help him to know where he came on the spectrum.
Harriet felt both happy and sad to get the diagnosis;

"Sad that I would never be part of a world I spent so long being on the outside of. I used to think if I tried just a bit harder I could belong and be accepted – it does look good sometimes your world. To be able to laugh with different people, find things to talk about. Happy that I could stop trying so hard because I would never get there.  That I could now say, please stop punishing me I am trying as hard as I can – there is a reason I cannot be what you want. But in saying that, there is a great pain and loneliness and black hole."

Vicky wished she had not been diagnosed because it made it difficult for her to get a job, but she felt it allowed her to access support. John L, after a period of rethinking his past, found he was less angry as a person and has accepted himself a bit more. He’s been able to break the “pattern of behaviour or anger, action, reaction, depression”. Paul I said he felt (understandable) anger and some bitterness about wasted opportunities after being diagnosed aged 24 but got over it in a year and a half.

“I understand now why I do those things”
Getting the diagnosis encouraged some people to read about autism and, in turn, this helped them to make more sense of their lives and the difficulties they had experienced.  Michael read books about body language and learned to make eye contact with people.  While another man described getting the diagnosis as life changing;

Just generally knowing what I have got, has made all the difference to me because there is just an excuse, a reason why, you know, if I feel bad in a situation now, I know how to deal with it better.  I know why I feel like that – it’s not that I am just randomly panicking for no reason.

Getting the diagnosis led some people to have expectations about support and understanding although this was not always forthcoming.
Debbie said that she had expected friends to understand but they thought she would be able to change now she knew what the problem was.  A few people were verbally given the diagnosis but had nothing written down which was a problem when they wanted to access support.
Gail wanted a diagnosis so that she could access support at college, but she’d known she had Asperger syndrome for years and didn’t feel she needed a diagnosis. Once she had the diagnosis, she was glad because before this, when she said she thought she had Asperger's, other people were likely to think her weird for claiming it.

Looking back
Although Leo Kanner and Hans Asperger both identified what became known as the autism spectrum in the 1940’s, it was not until several decades later that understandings of autism and the diagnosis of autism spectrum conditions became more common.  Some people who were diagnosed in their middle age or older, talked about how much easier their lives would have been if they had been diagnosed much earlier. They felt that they could have been offered support at school and developed better self-esteem.

Others had mixed feelings about the timing of their diagnosis. Gail, for example, thinks that she would have limited her opportunities if she had been diagnosed earlier in her life.

Last reviewed July 2016.
Last updated July 2016.

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