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James - Interview 49

Age at interview: 22
Age at diagnosis: 12
Brief Outline: James was diagnosed with Asperger syndrome when he was 12 years old. After spending some time in a psychiatric ward, James went to a specialist unit on the site of a mainstream school and is now in his third year studying psychology at university.
Background: James is a university student. Ethnic background/nationality: White Scottish

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James, a psychology student was diagnosed with Asperger syndrome when he was 12 years old. When he was very young, his parents were concerned about some of his behaviours; he would always want the same cup, plate and cutlery, play with the same toy constantly and his motor development was different. It wasn’t until he was about ten when James began to get headaches all the time and found being in the classroom very difficult that his parents began to push for a diagnosis. At around the same time, his peers began to start having more formal friendships and it became apparent that there was something different in his development.
 
James was diagnosed with Asperger syndrome during his first year of secondary school and describes how nobody real knew what to do with him. He found the diagnosis “pretty soul destroying” and describes feeling very bad about himself. It looked as though he would end up in residential care because he could not deal with the rigours of everyday life and he spent some time in a children’s psychiatric ward on anti-depressants.
 
His parents found a secondary school in the area which has a support base for children with high functioning autism and Asperger syndrome and James went there feeling ambivalent about it. For the first year at the base, he didn’t attend any mainstream classes and staff worked on his social skills, building his self esteem and enabling him to feel confident enough to enter mainstream classes. While he avoided going to the classes, the staff used the tactic of making life as boring as possible in the base and James eventually began to go back into the classroom.
 
He worked his way up to a 75% timetable over the years and was able to withdraw from classes and use quiet rooms in the base to relax when he became stressed. He made good progress academically but was told by the educational psychologist that he was unrealistic to expect that he could go to university. By the time he got to the fifth form, his confidence was growing and he had made some friends. He was selected to coach basketball and reached a turning point when he stood up in front of his year to explain what it was like to have Asperger syndrome. He went on to get straight ones in his Highers, was voted Prom King and Outstanding Pupil of the Year Award before going to on to university.
 
James is now in his third year of university studying psychology with a focus on autism. He has had financial support to provide him with equipment such as a hand held organiser which is important to help him to manage his problems with organisation. He has had a girlfriend since fresher’s week and describes himself as a ‘middle of the road’ student in terms of academic achievement and social life.

 

James felt very bad about himself when he was diagnosed during secondary school. He said it was ...

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I suppose when I first got the diagnosis everyone sort of, everyone didn’t really know what to do. That was 1997 when I got diagnosed… probably a lot less information about then, then there is now. They were all sort of like what do we do here? What do we do here? And you know I really don’t know if my GP knew really what to do or my psychologist, my psychologist really knew what to do. And my parents certainly didn’t know what to do at first because they were coming to grasps with this whole new concept. So... when I did, so when we did find out it was a bit of a shock and we didn’t really how to deal with it. 
 
And just as we found, I was at the academy, it was quite a big school and for you go to go all the way over to a big academy, all of a sudden there is like 1,500 pupils. It is a very, very big school. The corridors are quite crowded. . A whole lot of new people to meet and I would say that at that stage it became quite, really quite difficult for me to deal with it.   And [coughs] I would probably say that was probably the most difficult point was when I first found out because when I first found out I suppose I don’t .. I sort of you know, the feeling of being, well basically being disabled in a sense that you sort of think that is it for the rest of my life. I am probably not going to have that much opportunities to you know move on or you know make friends because basically someone’s sort of saying, by the way, you are not very good at speaking to people, so when someone says you’re not very good at speaking to people, it is pretty soul destroying, not good for your confidence and you sort of feel quite bad about yourself and stuff. 
 
And when I found out I just you know, felt that you know if I was ever to speak to someone, you know, it was almost a burden for them and it is really difficult for them.
And then maybe, and then, this was the problem, you know, in my first year at secondary school, it was really difficult really difficult to come to terms with it, really difficult to deal with. You know there was a number of run ins with people and also you know everyone was always getting a bit desperate to try and help me, so I am getting these visitors and all sorts of people and I sort of felt a bit of a zoo animal, because there was people, all sorts of people, you know from different health professions. And yes, they did try to help me, but I just sort of felt they are going to come in and they are going to ask the same questions again and again. And as I was, I was really fed up with it, but at that point I really just, I really sort of thought there was no hope and everyone sort of thought there was no hope.
 
And my parents… I mean it was just guaranteed that I was going to being in residential care for the rest of my life of some sort or some form because I just couldn’t, I couldn’t deal with the rigors of daily life and obviously for my parents it was very stressful, really very, very, very stressful.
 
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James was worried about going to university but it has been 'brilliant'.

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And all of a sudden, you know, you find, you break the barrier, you start thinking well I quite like these people and you know... and you know I mean just for an example like, I made friends with, well basically I met up with this girl on the Sunday night and it was like Freshers week and I suppose it was one of these things where it is almost meant to be a little bit of a fun week and you go out and have a good time and everyone goes out clubbing and I met this girl and it was all going really, really well and I didn’t really think anything of it, but I am still going out now. So that has been three years since September, so that was sort of like brilliant.

It is like a financial sort of its where you get your student loans and all that.   It is a financial support sort of place. They have quite a lot of generous funding actually. I will show you this in a minute because it is just here. [interruption] They gave me this and basically what it does, it allows me to sort of organise myself, organise when I have got meetings and things like that [coughs] and I can write to do lists and they probably do a lot more things and a lot of different fancy things that you probably know what to do but I don’t really know how to [laughs]. And basically it allows me to organise my week you know organise my week and things like that, my week at university and you know they have a disability advisor and basically I thought, I mean basically they will do whatever you need , and provide you funding for whatever you need, they provided funding for, for me for a lap top which is you know, great, a printer, a lot of financial sort of support in terms of things like that. And they were really generous in that sort of aspect.

 
In regards to like other support it was most certainly offered but I sort of felt, at that stage, at that stage having had support, I had gradually weaned off it and I had sort of became sort of quite independent. I came to the conclusion that really you know, I want to be doing this by myself now and not relying on other people. So... I decided at that stage I didn’t need any support any more and I was basically going to do this by myself. So yes, it was available but I didn’t really feel that I required it any more. So that was quite nice to know.
 

James became significantly depressed as a child and ended up in a psychiatric ward.

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And I mean on top of having Asperger's syndrome I just beginning to act up behaviourally in the sense that I was beginning to get a bit fed up and it was a natural normal way because I just thought at that nothing was the change and I became pretty significantly depressed.
 
It was at that stage and... at that point... I was put into a child’s psychiatric ward. That was quite, that was really difficult for my parents and for myself and I was put on antidepressants and you know I was 12 years old and I think there was a sort of feeling on my part that antidepressants were … on my part I was 12 years old and I was already on antidepressants. That is pretty depressing [laughs] in itself.
 
And I became... you know really fed up and there were points where, you know, people were coming in and I just almost refused to help and I became really, you know people sort of presume that if you were Asperger's you don’t have any sense of humour and so they were quite sort of, they you think you take everything you say for granted.
 
And it was just a point where some sort of, I don’t even know, some sort of therapist or something came in and starting asking me questions and asked me if I ever saw things. At that point I said I did actually see things and they said well tell me more about it. And I said well sometimes there is people’s faces; I see with faces with sheep on the top of bodies. She went into like a massive meeting and told everyone about this and it was quite embarrassing for her. But that is what the stage I got to. I was so fed up with it. I just didn’t really seeing the point any more if nothing would have helped me.
 
But then at that stage I was probably the lowest, the lowest I have ever had. The sort of feeling that nothing was going to change. There was no hope. There was no way that I was ever… things were ever going to improve at all. I was just at that stage where you just thought I have got Asperger's syndrome and this is what it stands for, it stands for the fact that I am never going to really stand a chance.
 

In his last year at school James found that he had made friends without realising it at the time.

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And it was just such a really great year. I did a lot of coaching and stuff and I started doing a lot of work, you know working in the base, actually helping other people in the base and that was so great because I felt like I had received a lot of help and the idea that I could even help someone who was going through the same thing that I was going through was amazing because I knew how difficult it is and how stressful it could be. So that was quite a lot of confidence building.
 
And at the end of the year we would have like a school prom and it is quite, it is quite an American thing I think but I think a lot of people have it now. And like they have all these like silly awards and stuff like that and there is award for like Prom King and Prom Queen, Jester and all these sorts of silly things. And Prom King I mean it is just basically a blatant popularity test, a popularity contest and basically I won Prom King and so like I was quite surprised at the time to be honest with you but I sort of thought, it just sort of shows you how much people can sort of think you would never make any friends and you would never really be that popular and you know it wasn’t… all of a sudden that sort of thing happened and people sort of and people sort of, it makes people sit up and take notice a bit about that , that idea that thinking happens, the idea that people with Asperger syndrome are like capable of making friends socially. I think it is just a bit of a learning process and you need to learn certain things, you need to learn certain rules and all of a sudden if that sort of thing happens that can be made possible. 
 
I also won the most outstanding pupil of the year award and that was just, you know, amazing the idea that that could happen, it was just like incredible that it was just that everyone never thought it could ever happen. It was just so surprising that I ever did. You know like, and I always remember that, it is just it got presented to me in front of a lot of our school, it was a big assembly sort of thing and the teacher made a speech and he was really, really nice about me. Said a lot of complimentary things and and I was probably really, really surprised and probably that was quite hard to do, as I got quite emotional at the time things like that but I was really pleased and couldn’t believe it.
 

James talks about how he felt his life was “an absolute nightmare” but it turned around and how...

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But you know I look back and like this was the end of 2004 and I look back and I sort of look back on the year, and I look back at everything that happened and it is just like this is not a bad situation to be in all of a sudden because right before it was an absolute, oh it was an absolute nightmare really. 
 
Now I don’t, I mean since uni I don’t think really think there is anything really specific about Asperger syndrome that has really happened. I have just sort of done the same usual student things, you know, I have worked quite hard, you know, I could have worked harder but so could have most people. I could have done more work, you know I could have done more work, and I really could have maybe been striving after the first and should have after the first things like that but I thought oh well, I suppose I have always thought, and I suppose this is what I’ve learnt from the school right through it, you know, while what I academically is important, making friends and making you know, making the effort and working on how you socialize and things like that is also very, very important. You can’t… it would be silly of you to neglect that and so I suppose other things like playing football and... in the first year. Like I went and played for my Halls team in the first year, you know, I was part of the football team, and that was great again to be part of a team and you know, playing football again because that was a good feeling as well because I hadn’t basically played football since primary seven, you know, and in primary seven I was I was actually, you know, doing really well with football, like I was you know… I was doing quite well.
 
And I came back in first year I was by no means, I am pretty rubbish now, but I was playing and like I was lucky in I got captain of the team now. That is just like a good confidence booster and it makes me feel quite good about myself and now I can sort of go away and it gives you a bit of, you know it gives me a bit something else to do other than studying. I suppose things like having, you just having other things to do is probably more important than studying as well for me, because I don’t see the point in just the whole idea about university, so I suppose the fact that I had Asperger syndrome has been fairly testing, like it is fairly, fairly testing and I mean you know, it has been really, really like there has been times when I look back and it has just been an absolute, you know it has been really tough on my parents, and really tough for myself and a lot of people around me like to deal with, and especially in the first years, but now looking back on it and looking what I have learned from it, I probably wouldn’t have it any other way.
 
You know. Looking back, looking at, you know, there are sometimes times time I’m glad I had it, I look at all the games that people play and all the lies that people tell to each other, you know, okay, maybe back perhaps I was younger I was perhaps a little bit too honest for my own good, but I would rather be more on the honest side then more, you know, the sort of person who is constantly playing little games and little social games and things like that. Whilst I know it is important to have a bit of tact now which is possibly something that took me a bit longer than most to learn. I now know it is important to you know have certain skills and do certain things but I really, really have it. I just wouldn’t have myself, you know, I wouldn’t have it any other way basically and so I am fairly pleased this is the way it is now.
 
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James describes how he gradually weaned himself off support and started university without...

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And then all of a sudden like I am off to university and here I am.   And you know the first year, the whole of the first year, was quite nerve wracking because all of a sudden, it is the same old story, it was being back at the academy again, but I have got no support now and I have got to go in. I had this really strict, I had this really, really strict decision with myself that I was going to go into the halls of residence and I was going to force myself to do it, even though I absolutely hated it. I absolutely hated the idea of going in and having to meet loads of people, absolutely terrified. You know, so scared, and I think there is a bit of that in everyone but I think particularly for myself and [coughs] for a lot of people with Asperger's it is horrible, you know it is absolutely horrible having to meet people. And the first night I found it really, really difficult, but the second night all of a sudden I made loads of friends.
 

The educational psychologist didn't think James would go to university.

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Why do you think the educational psychologist was so sure that you couldn’t go to university?
I suppose, I mean I’m looking to try and understand why that is. I think there was two factors in a manner of thinking. First of all there is a general misunderstanding of the literature and you know the facts about asperger and, you know, a general misunderstanding at the time you know about what these people with Aspergers could do. This whole idea, you know I think a lot of people struggle with this Asperger syndrome [5 sec pause] it is a difficult, I mean you can almost describe it as a learning difficulty in some sense but it doesn’t really affect intelligence.   It doesn’t affect, you know it doesn’t affect all abilities. I suppose if people hear that someone’s been diagnosed with some sort of you know, some sort of developmental disorder or something like this they automatically presume you know, it’s not possible. I suppose, I think, the second factor is [5 sec pause] she maybe never ran into someone who was in a position that they could go to university.
 
I don’t think it ever occurred to her the reason that like it might be was because they may never have been in a position where it is possible for them to have a chance to develop you know, to get, you know to a certain level, to get to a stage where it is actually possible for them to go to university although up until I sort of [10 sec pause] got my diagnosis and it became all this ‘oh I’ve got Asperger syndrome’ maybe there wasn’t a lot of information but there was just about enough at the time, there was just about enough at the time there was just about enough where it was saveable and that base came along just in time, you know, okay there wasn’t a lot, but I would say if I was two years older than I am now, and that happened at the same stage as it did, I probably wouldn’t have stood a chance and I probably wouldn’t have been here right now. So for me I suppose it is just a case of, you know, I was kind of lucky. I don’t think my educational psychologist had ever seen anyone who had the chance to do it so I sort of think she might have presumed that its not possible and I don’t think she did it... though initially when I found out I was pretty irritated like, how dare she like sort of say I can’t do it.
 
Now looking at it I sort of realise that she was doing it because it was like help, you know, sort of misguided help. I don’t know. I don’t really know what led her to think that but I mean I suppose one other factor was using IQ tests, and Westlaucher tests and things like that, my results were a bit misleading when they came back and things like that it was suggested – I’m not a big fan of IQ tests particularly if you’re working with people with Asperger syndrome – but I can’t remember what age I was but I got an IQ tests basically, you know I add up to 88 and I did one on the internet and for some study and I got like 140 and I don’t think either of them are particularly accurate [laughs]. Like I just of think I am a middle of the road sort of university student and more than anything I don’t care but I sort of think because she relied on that IQ tests she sort of looked at me and said you won’t go to university and she was wrong but I think she thought that at the time. I think that was why.
 
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James would like more books that say 'yes, actually, it's okay' and talk about more positive...

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I think probably for schools because that is an area as well that concerns me a little bit, is the fact, it is the lack of knowledge, still in mainstream school with the teachers, although it is getting slowly better, but it is still a big problem. There is a book called ‘One thousand and one things’ by Helen Rowbotham but she has done ten things that an autistic child wishes that you would know about them. That is good. I think most teachers should have that pinned to their chest I think for a school day. Although there are some good teachers out there - I don’t want to offend any teachers - but I would like to wake some up as well though.
 
There is some good books. Luke Jackson’s got a good couple of books, that are good that will give, there is an insight. I think Luke does a few good things anyway. And I think he thinks that. I think Luke thinks Jackie is on the practice as well is one thing. I think my wife is on the spectrum but there you go. There is lots of things really. It depends on what context really but there is lots of good material out there. And it is like a lot of it needs collating I suppose and putting out to the general public. There is lots of good practice in lots of areas in the country. Lots of LEAs within our county for a start there is lots of really good information out there. Lots of knowledgeable people but its not utilised right. So, that is one thing, but as I say it depends on when you say have you read some good things. I have read lots of good things. Yes, lots.
 
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James has found self help books more useful than books written about autism.

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So I don’t know, I found actually I read quite a lot of self help books, self help books and I found that is maybe quite useful for a lot of people with Asperger syndrome, [coughs] because in essence these books quite often go through social rules. There was this idea I found that a lot of people who don’t have Asperger's don’t have a nervousness or awareness about this or a lot of people who don’t have Asperger syndrome are quite insecure and don’t know a lot about social rules and sometimes when you read these books like a lot of the books about Asperger's syndrome they deal with quite a lot of basic things and that is fine because then you get a basic understandings about social rules but some times when you go in and read these self help books, sometimes these are quite useful because they deal with a lot more intricate, you know a lot of aspects and things about self esteem and I find them really quite helpful and I know a lot of them are quite cheesy and things like that, and obviously that’s not great but what the general message, you know, it could actually be quite useful for people with Asperger's I think.
 
And it was mum’s idea to buy me one and it was all about building your self esteem and being aware of things, you know rules for life and things and all that sort of books sort of that help. These sort of books actually almost help as much as the Asperger syndrome books because they look at issues like self esteem and you know, and social awareness, you know, organisation which is problems that ordinary people have every day but it is also particularly relevant people with Asperger syndrome so I thought that these books were quite helpful, almost as helpful as books on people with Asperger's.
 

James describes his schooling at the specialist base.

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I became, at that stage like I say I was pretty cynical but we found out about a secondary base that like in a school not too far away from [town] and that was you know a mainstream based, like a base within a mainstream secondary school and there was a like sort of support base for children with quite high functioning autism and Asperger's syndrome and [5 sec pause] my parents were really keen for me to go, but I was kind of quite cynical. I just thought oh this is just going to be another idea, another flash in the pan and it isn’t going to really work.
 
 I think my parents were quite worried about me at that stage as to what I was going to do and things like that because you know theoretically that could have been, you know, theoretically I was almost at the stage where I was thinking about doing something which I really shouldn’t have been thinking about doing. But I went to this base and for the first year I didn’t really go to any mainstream classes or any you know any maths or that, and for that reason they kept me back here just to basically ensure that [coughs], the transition from school to school was as stress free as possible and I could ease into, and get a secondary school environment.
 
And I was quite fortunate in the fact it was one to one staff, staff to pupil ratio. That was excellent, that was excellent for me. You know they started working on things like social skills and all these things that were you know associated with Asperger's syndrome, but also the other thing that you know when people look at the core symptoms of Asperger's syndrome, you know, the triad and things like that, its all very well, it tells you a little bit but it doesn’t really tell you anything about the other problems, like the self esteem and all these types of things and they worked really hard in building my self esteem and making me confident enough so that I could go into these classes and things and when I first went in I was may be seven [sniff] or eight months into the base and they were sort of like James you have got to start thinking about going into classes now. And I tried everything possible to avoid it.
 
But they just started working this tactic where they made life as boring as possible so I really eventually went into classes and I remember, I just remember the first day there when I went in, I was like shaking and almost in tears because I was really nervous about the first time I went to a class but I did it and I stayed there for the whole time [sniff] and you know it is quite interesting because you are a first year and everyone, everyone sorts of looks at you around, you are this new boy and they all know I was from the base so it was quite difficult for them. It is quite strange for them, so they are all looking at you, you know like basically you are a bit of a zoo animal because they are quite, because they quite confused really and they don’t really understand about Asperger's syndrome or what autism is really in essence.
 
So that was quite a big point and then gradually basically the classes built up and [sniff] I went to English, and science, basically it started building up until I was at about 75% timetable, which was excellent for me, which was perfect for me and there was enough time for you know for a chill out thing in the base so that I didn’t ever become too stressed out. So so that was good. You know, I really, you know I really thought that … I finally felt that we were making progress after the diagnosis but you know. 
 
I mean that is not to say there wasn’t a good few ups and downs through the whole thing and there were times where I … at one time I went to go a 100% into classes and it was you know, I had to sort of take a backward step and things
 

James summarises the ways in which the base helped him.

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Can you sort of sum up what it was about the base that allowed you to obviously make the progress you have made. What was it they actually let you do or …?

 

I suppose they call it cognitive behavioural therapy. Just sort of stuff like learning social skills, you know, really working, you know really working quite hard on the social skills aspect and the organisation, [5 sec pause] really working on that sort of thing.   Self esteem, I would probably say that’s the three things; self esteem, organisation, and social skills. Really, [coughs] making you feel that you could go out and have the [coughs] confidence to speak to people and   just providing support day to day. Making like, knowing that some days like if it was too stressful to go to classes then they would understand that and they’ve got quiet rooms, little rooms forr you to go and work basically if you ever get stressed and it becomes a bit too much. You know if the environment gets too much you can go to a quiet room where you can calm down and sort of destress so to speak
 
And that was massive for you know, for myself and many other people in the base that here we have an opportunity. I look at a lot of people in the base and I look at myself and I know that is a massive factor. Like constantly like, well I know all bases aren’t perfect but I know looking at the place that I went to that they were you know, doubtlessly always looking for things for specific help for people with autism and Asperger's syndrome and ways to improve things, looking at the environment, the   classrooms were painted with non-reflective paint, blinds to ensure there was no reflection through the window, not put ticking clocks in, and little things, using carpets so there is no reflection. And now even I came back and visited recently and now there’s things like exercise equipment in the base and they have got a Nintendo wii to help people exercise and keep them moving and improve their coordination.
 
So just things that are just looking at, I suppose it is just relentless, the base, what they do is just well for me the relevance is they look at every aspect and try to see what there is to improve you know. So I mean those specific things, even things down to looking at diet and I don’t mean that in the gluten free sense, like I drank cans of Iron Bru every lunchtime, you know, sort of looking at every little possibility like what is affecting my behaviour so they made me come off Iron Bru, well it turned out it wasn’t due to the Iron Bru but that’s just an example of, you know, of really looking at everything you know, just addressing your every need and it was just that, you see that compared to the academy, not that the academy is bad, just that they didn’t really have the opportunity or the resources to help in the same way the base did and I think that is probably what made the base so good.

 

James finds the search for cause concerning and thinks the search for a cure is problematic.

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I don’t know. I don’t think, I think this desperate search for one particular cause is a bit concerning at times. I don’t think people really understand, have a good understanding of the fact that I don’t necessarily think that this idea that Asperger syndrome and autism and you know, whatever, autism spectrum disorder. It is sometimes people with different types of personalities and different ways and things like that. I am not convinced there is one single cause, and I think everyone is so desperate, everyone is, you know, so comfortable and really likes the idea that it is one singular cause, it is definitely this, and it is definitely that, everyone is so desperate to find it out. I don’t know if there is one singular cause for it for it happening.
 
Especially since it so almost merges into, you know the way it happens and the whole idea of a spectrum, the way it merges into people, you know I don’t know. ...I think, it depends like, it depends what, from psychology and looking at it from what I know and the brain and things, what I read and things, I don’t know. I just think there are a number of causes, a number of factors and people and psychologists and experimental psychologists hate that, that idea that there can be only one, you know…. I read a question it was like what is a singular cause, you now what is the cause of Asperger's and autism; is it the theory of mind deficit, the executive function deficit, you know in our psychology exam we had to write there was only one answer as if there was only one cause and that really, really irritated me, because I was like well there is not only one cause.
 
You know maybe there is, maybe I am wrong but you know I don’t think you should be going round suggesting it could be this, this, this or this. I… ultimately no one knows and I don’t think anyone is particularly close to knowing, I think there’s an awful lot of bluffing about diets and MMR, something else and parents really desperate to find out a reason, people want a scapegoat as well, I think, people would really like there to be a scapegoat for it. I just don’t, I just don’t think that anyone really knows yet and I think the problem is that people would really love to cure it, you know if they cure it, you know cure autism and Asperger syndrome but I just don’t know how you would do that without … I don’t know, I don’t really know how you can do that. Where do you stop? Do you stop... You know. So I don’t know, I don’t know what the cause is but I know there is a few ideas but one thing I will say is I don’t know that there is a singular cause and it is something that people constantly talk about when they work in autism is this idea that it is just so multiple, so many different types of … you know behaviours and groups and sub types, its almost a category of convenience and I am not overly convinced it…
 
...I don’t know, and it is so difficult, because do you make the diagnosis more specific and put it into sub group types I don’t know if you can do that because I just don’t know if there is enough people who can diagnosis it actually as it is, without putting people into sub types and what does that achieve? I don’t know, I think what it would achieve is that it would allow for the signposting to be better so you know you have got two people, like if there were two people at base absolutely opposite in every way so people automatically say, you know a teacher or a doctor you know or someone knows what someone with Asperger syndrome or autism once and there is this constant presumption that if they have met one person then they know what to do for the next person and that is not, that is probably, everything that a doctor or you know
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