Trying to get an autism diagnosis

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.

Age at interview 37

Gender Male

Age at diagnosis 36

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Initially I went to my own GP. And I got a letter back saying she couldn’t really do much for some reason, and I obviously had an IQ above 70 which I thought it was a bit ridiculous. And so I got in touch with the [county] Autistic Trust and some other people and saw a different GP who referred me to them. Then I was put on a waiting list, and then went up to see them with my mum. And my mum was interviewed separately. We were both interviewed about my childhood and things, then in the afternoon they came back in with everyone there, and were quite unequivocal about it and said I had indicators across the board although I was obviously very capable and high functioned [laughs].

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Having seen a psychiatrist who did not make the diagnosis Richard and Sue did their own research…

Age at interview 58

Gender Male

Age at diagnosis 51

Sue: We approached the GP first or I did. And the GP was a bit reluctant about the whole thing.

Richard: I remember we went to see him together. Had you seen him first?

Sue: Yes, I went first I think.

Richard: I remember that when we went together, that must have been the second time the subject was brought up, that I actually had to spell Asperger for him, so I knew that was a bad start. I knew we weren’t going to get anywhere.

Sue: He did eventually refer us to a see a psychiatrist for an assessment of Richard to see the psychiatrist but it was something like a six month waiting list and then when that eventually happened that consultation it was something like 45 minutes with this psychiatrist who basically just took a very skimpy sort of history.

Richard: Well basically he took the history of my depression. True I was depressed, but that wasn’t the point. I mean I was suffering from depression and I was getting antidepressants from the GP. That wasn’t what I wanted to see him about. But he took nearly all the time taking the history of my depression and then said he could see me for a second appointment in another three months.

Sue: So I mean at that point we felt that we weren’t going to get very far
Richard: We weren’t going to get very far.

Sue: through the system. So we did some research, Richard did some research
Richard: Yes. I found there are a number of good resources.Barb Kirby’s site is fairly central, Oasis and one of the links on there was to the Class Clinic in Cambridge, Dr Baron Cohen, a professor really
Sue: Whatever he is now.

Richard: And I applied to him, and, you know, he said, yes it was quite possible for him to consider me for a diagnosis.Our GP wasn’t very keen

Sue: Well he wasn’t keen until we pointed that that he could actually make an out of area referral to Cambridge and it wouldn’t actually cost him anything.

Richard: Because it’s

Sue: Because it’s actually a charity, it is funded by a charity that particular clinic.

Richard: That improved his opinion. Although the GP had said, he had said to me, Why do you need a diagnosis? There is no treatmentBut I mean I just backed my wife’s view on the diagnosis and for me, I also thought that I would rather be an Asperger than be wrong, weird, with no known cause.So that got us onto the system. They sent us some questionnaires, fairly lengthy questionnaires. We did those. They wanted to interview my parents, but it was far too late for that. They wanted to interview somebody who knew me as a child and with a lot of effort the best we could come up with was my younger sister. Obviously she is younger, but she had known me through part of her childhood.

Sue: And she had heard stories about you when you were a smaller child anyway.

Richard: And that was the best we could manage. So they had quite a long telephone interview with her. And then we went to Cambridge and it was a couple of hours or more wasn’t it?

Sue: Yes.

Richard: Two of us, two of them, an exten

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Laurie followed ‘step by step’ the recommendations on the National Autistic Society website.

Age at interview 49

First of all can you tell me the process of getting of getting the diagnosis.

I went. Oh I followed it step by step off the recommendations on the National Autistic Society website.It is brilliant. A marvellous, marvellous website it is really good, and user friendly and everything.

And I printed off some information and I got the NAS to send me a big brown envelope full of leaflets and information. There was in there a laminated thing, information sheet to actually take along to the doctor, because it does say, you know, not all, GP’s just don’t necessarily know an awful lot about it. SoI went down to the doctor and said, I think I have got Asperger syndrome and I would like a proper diagnosis pleaseAnd she said, What makes you think you have got Asperger syndromeSo I Er, um, er, because I just do sort ofI didn’t want to go, Well just because rdquo;And I told her about the research that I’d done on behalf of my son which made me feel all right because I wasn’t actually looking for something to be wrong with me. I was, I was, you know, I didn’t wake up one day and think, shit I am autistic. It hadn’t occurred to me that it might be me. I just, anyway, anyway, I went to the doctor and that is what happened. I had to wait a while.
I got an appointment through.I went along to see the lady, who wore striped trousers.AndI can’t remember her name. [name], Her name is [name] and she had striped trousers on. And little stripes. You now different colours things, not pin stripes.And, and I had to go back a couple of weeks later. Was it two weeks later?Or one week later?Because you came with me didn’t you?I think it was one week or two weeks later. But she said on the day that I was clearly on the autistic spectrum. So and I had to go back and she told me why and she gave me a great big wedgy of paper.All these lots of sheets of all the reasons why she thought I had it and everything and she said I was 95% because, which is stupid because it says, because they can’t work in 100% so I had to only be 95%.So nbsp;And that was it.

They asked me if I wanted counselling. I thought well not particularly. She didn’t offer that sort of service. No, I was all right about it. So I went off with my certificate and that was it.

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‘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.

Age at interview 27

Gender Male

Age at diagnosis 25

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A which point did you sort of think right I’ll go then and see if I can get diagnosed too?

It would have been late 2006, it took me a while to think about it, I wasn’t sure whether I actually wanted to do it or not. It started in 2007 but I didn’t finish the diagnosis then originally because… I can’t remember why, I think there was a little bit of messing around with appointments and so I kind of gave up on it. But I managed to actually get sort of finish the diagnosis in 2008. So I was quite happy about that, that I’d finished it basically.

So what was the process they gave?

Go and see a clinical psychiatrist or a sort of psychologist, and they ask you a few questions about background, they speak to your parents together. Background of your childhood, things that you might not be able to remember. Then I spoke to a psychiatrist after that as well and the same thing, they just ask you the questions and obviously make the opinion on how you answer. Kind of fairly straightforward.

And what do they do when they tell you; do they just say yes you are? Or do they give you a piece of paper or

I had a piece of paper and I’ve got it somewhere. I did get a phone call to confirm it. They said that, you know, The letter’s in the post Yes and that’s really it basically, yes.

It no big deal to you in a way, it seems like?

No. Not really because I mean I kind of always suspected it. ButNot really, never really sortI wouldn’t say it changed my life, it defined me a little bit more, gave me a little more self awareness of me. And it’s made me a little bit happier. Obviously I’m more defined as a person, because of it. There’s a lot less chaos.

There’s less chaos?

Yes.

What because now you can make sense of it?

Yes. Because if there’s something there that if I don’t quite know I could research about. When there’s a why do I do things like this and no one else does?’ I know why, what was causing it now, and I know how to research it and what, what to look for. And it’ll give me a little bit of peace of mind just through knowledge and education and stuff about it.

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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…

Age at interview 22

Gender Female

Age at diagnosis 21

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And I read about, I did, because my mum has a friend whose son has Asperger’s Syndrome and he was diagnosed as a child. So I was aware of this syndrome being related to autism, I had heard of it. But I wasn’t really, I didn’t really know much about it. So I did, again I typed it into Google and looked on the internet because I just wanted to find out what, more about what it was. And I read about it and I was like yeah, that’s kind of what I have. Because it’s like I’ve never been able to make friends, socialise properly, with people my own age group. Always been very, very it was mainly the obsessional interest that really stood out, like you know, Kate Winslett was just so extreme. Just not like a normal interest. It was just like 100%. So yes, I immediately thought, yes, that’s what I’ve got. So I went and told my mum and she said, Yes, we’ve always known you’ve had that. You know we’ve always known that. And I said, Well why didn’t you get me diagnosed? And we had this like discussion about how she didn’t want worrying about future life chances, and how she was waiting for the school to do something, and the school never did beyond giving me that statement.

So, so, yes, and then we had to try and get a diagnosis, which was not easy. We got it on the NHS. We did at one point consider going private because you know, you do have to wait such a long time, but it’s very, very expensive to do it private and also you know, we wanted it to be done properly. It’s more official if it’s done on the NHS, than if it’s done privately, because not all private diagnoses are accepted, so we wanted to do it the proper way.

So but it was a very, very long process. It last like, you know, about a year. First of all we had to convince the psychiatrist to actually refer, refer me. So I saw a psychiatrist, a consultant psychiatrist and she actually, she actually said, you know, she didn’t think I did have it because I was interacting so well. And I remember getting home and so, so annoyed. You know, I was like really, really upset, because I knew that, I know that I can. And I think this is a problem with something like quite subtle with something like Asperger’s. I think particularly if you’re female in many ways, because people expect you to be social and maybe you do. You’ve learnt perhaps social conditioning or something, to be more social or something. So I think sometimes there are many like different manifestations. And I think some psychiatrists still don’t expect girls to have it, so may be that, and also I can, on a one to one basis, particularly with someone whose older than me, I, sort of in a professional situation I think I can come across as not different to anyone, without Asperger’s which is not that obvious.

So I know that, and I think that’s the hardest thing; people don’t understand what it’s like inside. Or, your day to day life’s not being able to make friends properly. You know, I was thinking to myself, okay if I didn’t have it why, why can’t I make friends then, or why can’t I socialise? Why have I got all these problems? And I knew I had it. It’s just I, you know, I thought well I’ve either got that or I’ve got a personality disorder. So I came back, and I was really, really, really upset, because I was kind of in turmoil thinking well what do I have then? So that psychiatrist really wasn’t good.

But yes, then so we got a second opinion and the other psychiatrist was way more sympathetic. He was a younger psychiatrist, than the other one, I think the other one was you know, just quite an old psychiatrist. She was about t

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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.

Mark arranged a private assessment some distance from home after finding his GP, the NHS and the…

Age at interview 27

Gender Male

Age at diagnosis 26

And to be honest I found most organisations, incredibly unhelpful in the matter.Particularly the NAS, useless in the extreme. I mean chronically, chronically useless.I discovered that t here was an organisation in Scotland,Scottish Autism something and they are apparently based, you know ten miles from where I basically lived all my life. Never knew they existed.I contacted them.They were equally unhelpful. I found the NHS to be extremely unhelpful.Most avenues of going for a diagnosis privately, which is what I ended up doing,were still equally unhelpful because they demanded that they had to have a referral from a GP, and bluntly experiences with GPs meant, no I was not going to GP to raise this as an issue, because simply all they are interested in doing is saying.There is a good chap. Here are some pills. Now go away and leave us aloneAnd I thought well I’m not, you know, there is no point in doing that. It is a waste of time.

So eventually I found somewhere that didn’t require thatin [town]. So booked an appointment, booked trains, booked hotels. Off went. Diagnosis was confirmedand in fact actually in the December, later on of that year, the NHS decided that they were, I think, sort of perhaps not accepting of having a private diagnosis and they insisted that they do one themselvesand I was forced to be for another one with them, which I did view as somewhat pointless,particularly given the sum outcome of the diagnosis was the doctor involved was to say, Yes, I agree with that diagnosis. Yes you do have Asperger’s.Thank you very much for coming alongAnd that was it.There was never any support. There was nothing happened. No referrals to anyone or anything else.So it did all rather seem like a pointless waste of time. But

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