No standardised test exists to diagnose autism and people described different experiences of getting a diagnosis. Those people diagnosed as children often remembered little about the process. Simon, for example, said ‘I do partially remember some stuff, like going to a weird room and having this guy look at me and give me toys to play with’.
‘The GP was a bit reluctant about the whole thing’
People diagnosed in adulthood often sought the specific diagnosis of autism or, more commonly, Asperger syndrome because they had learned enough from researching on the internet or from contact with other people on the autism spectrum to believe that what they had learned applied to them. For adults, experiences of diagnosis often depended on the attitude of their GP. Some GPs appeared to have little or no previous experience of autism. Some were supportive in referring people while others were reluctant to do so. John’s GP asked him why he thought he had Asperger syndrome and when he explained, she referred him straightaway. Gail’s GP said that he didn’t believe in Asperger syndrome and it was just something used to excuse the behaviour of ‘naughty children’ in schools. Some people were seen locally by psychiatrists or psychologists while a few were given out of area referrals to a specialist clinic.
Damian’s GP wrote and said she couldn’t do much because Damian’s IQ was over 70.
Having seen a psychiatrist who did not make the diagnosis Richard and Sue did their own research…
Laurie followed ‘step by step’ the recommendations on the National Autistic Society website.
‘They sent some fairly lengthy questionnaires’
The assessment, once referred, often involved filling in ‘lengthy questionnaires’ and, sometimes, interviews with other family members. The diagnosis was usually given after a lengthy interview. Harriet, who was interviewed by email, described the process as follows;
“She [GP] sent me for very comprehensive tests which took weeks with a very kind person who would ask me questions and let me go away and write the answers on my computer and take them back to him, like I am with you, I could not talk to you like this, the words go from my brain to my fingers but from brain to voice I find processing too many steps for anything very complicated socially (like this).”
Oliver and his parents were interviewed before the diagnosis was confirmed.
Once referred to a specialist, people could still experience difficulty getting the diagnosis.
The first psychiatrist Mary saw said that she interacted too well to have Asperger syndrome. The…
Mary also reflected on how her mother had expected the school to do something about Mary but hadn’t. A few people got a diagnosis privately though there was always a question mark over the acceptability of a private diagnosis.