Most of the people we talked with felt relieved to be diagnosed with autism or Asperger syndrome and those who were diagnosed in adulthood felt that their lives would have been very different if they had found out when they were younger. A few people felt unsure at first or found it hard to believe but most viewed getting a diagnosis positively because it enabled them to accept themselves for who they were and understand the ways in which they felt different.
One of the main feelings expressed was that people were relieved to be “aspie rather than something unknown”. As one person described; “I am like different, but in a good way” while another woman described the day she got the diagnosis as the best day of her and her mother’s lives.
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 had. One man had read books about body language and has learned to make eye contact with people. One woman remarked that once she had been diagnosed with autism, she started to get on better 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.
One woman described feeling 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.
A few people found the diagnosis difficult to accept or understand initially. One woman 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.
Getting the diagnosis led some people to have expectations about support and understanding although this was not always forthcoming. One woman said 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. Another man found having the diagnosis had greatly helped him get the appropriate support to enable him to return to university.
With hindsight
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 disorders became more common. Those people we interviewed 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.
