Life on the Autism Spectrum

 

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.

 

 

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.

 

 

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.

 

 

No. Not really because I mean I kind of always suspected it. But… Not really, never really sort… I 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.

 

 

Yes.

 

 

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.

 

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

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 alone.” And 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 that in [town]. So booked an appointment, booked trains, booked hotels. Off went. Diagnosis was confirmed and 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 themselves and 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 along.” And 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 …