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Mark - Interview 58

Age at interview: 27
Age at diagnosis: 26
Brief Outline: Mark, 27, was diagnosed with Asperger syndrome when he was 26. He is returning to university to study economics and accountancy.
Background: Mark, a student, lives on his own. Ethnic background/nationality: White British.

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Mark, 27, was diagnosed with Asperger syndrome when he was 26. After two unsuccessful attempts at university and finding it increasingly impossible to go into work on a daily basis, he felt he had to “stop sticking his fingers in the ear and pretending it wasn’t an issue.” The process of getting the diagnosis was problematic and Mark ended up going privately. He wanted the diagnosis for his own personal growth and he felt very relieved when it was confirmed. It has enabled him to access appropriate support and he is about to return to university to study economics and accountancy.
 
Mark describes how he has always felt he was different to other people and could not understand why they behaved in the ways that they did. He was very serious as a child and was constantly encouraged to smile more. For Mark, loneliness became the “default position” and he still does not get the emotional bond with people that others seem to. He has learnt social rules but feels that much of the behaviour is pointless.
 
Mark feels that people find it difficult to understand how he is able to understand complex things like astrophysics and yet is unable to shop in Tesco’s or fill in official forms. He finds it “soul destroying” that he can’t cope with “trivial things” like going on a busy train or phoning a gas company. He found it helpful to interact with other people with AS soon after the diagnosis but has since decided that having the same label does not necessarily mean that people will have a lot in common. He also feels there is a lack of relevant books written for adults with AS.
 
While sex is important to him, Mark is single and has come to the realisation that he will probably remain single because the thought of sharing every detail of his life with someone makes him feel very uncomfortable. He has always had good friends and enjoys socialising.

 

Once Mark realised he had to stop ignoring the difficulties he was facing when he couldn't face...

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Originally April 2006, so it was last April that I, approaching eighteen months ago now. I think it was sort of something that I felt I sort of had to face up to and stop sort of sticking fingers in the ear and pretending it wasn’t an issue, which I had more or less always done previously. I had been very sort of adamant; everything is fine, everything is normal. I will fit in. I will behave in the manner that is expected I will do all sorts of things that everyone else does and just pretend that this isn’t an issue. And I think on the whole I was reasonably good at that. But it, you know, sort of day in, day out, sort of doing the, I think the best way to describe it, would be sort of, you know, putting on an act and you know, playing that role, just became sort of mentally exhausting and eventually reached a point when I was working where I just thought I can’t go in this week, no, just not up to it. Not happening. So I didn’t book any shifts. I didn’t go in. And then the next week, it was no I don’t feel up to it. And that sort of went on for, you know, a few months.
 
And, you know, sort of a year later I sort of realised, okay this is not good. [ahem] You know really had to kind of face up to this as being an issue and I decided that something had to be done about it, and so it would have been in sort of like the January, I started looking into going for a diagnosis of some kind. 
 

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

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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 …
 

Mark worried about not being diagnosed and felt that he needed the diagnosis for his own...

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If we go back to the diagnosis then what did you think on that first diagnosis, the private one when you were told? Can you remember how you felt?
 I remember feeling beforehand, sure of it. I mean it was something that I had sort of been aware of, for many, many, many, many years particularly in fact I was, there was a friend who I took issue with some of their behaviours and raised the issue with them, and they eventually said, “Oh well, you know, it is because I have Asperger's.” And I really over reacted I was very much of the well, you know, I am sorry, you are not going to get that as an excuse. It just means you have to try harder, you know, and I was really sort of quite rude, went completely over the top about it. And then sort of basically didn’t speak for like about four years.
 
 And I think sort of going for the diagnosis, more than anything, was for my own, hm, it was really sort of something I needed on sort of a personal level, as sort of a further step to accepting this is how things are. This is the problem. You know, you can’t sort of pretend that there are no problems going on here. You do have issues   with these sort of social things, you know, it is a problem, you know, doing this sort of normal nine to five job, and commuting and such. You know, lots of millions of people all around the world do this successfully, why is it particularly you have a problem with it?
 
And I felt that I needed the diagnosis more for sort of my own sort of personal growth then anything else and I did worry for, you know, weeks and weeks beforehand, “Oh my what if, they come out and say, you know, you don’t.” And then it would sort of very much feel as though, “Oh it is just me. You know, I am just sort of a screw up. You know, I can’t sort of, you know, in my head, sort of use anything as an excuse. It is just all completely my fault. It is just me.” And so I sort of felt really as though I needed it just to kind of accept it, and relax and then to deal with it as an issue. And so when I got the diagnosis I kind of wasn’t really surprised. I was more relieved then anything else. You know, it was a, you know, I am not being a hypochondriac; it is not just something that is all in my head. You know, this is, you know, it is something real. 
 
And I think also if I hadn’t sort of had the diagnosis, you know, I, I mean I would never sort of have come to this place, you know number six ‘blah’ ‘blah’ ‘blah’. You know I would never have pursued it or felt as though I kind of deserved any help with it. You know I felt I needed something on a bit of paper to say look this is real, this is official, you know, please, you know, be nice to me. Particularly sort of when the whole sort of process of going back to university. You know, now I have a bit of paper and I can sort of say, you know, please, can we not do this, can we do that, may be slightly differently. And I feel as though [5 sec pause] it is sort of allowed. I think before, you know, I always felt as though I was some sort of charlatan, you known pretending there is something wrong and I think more than anything, it was just for my peace of mind.
 

For Mark the diagnosis means a 'little magic piece of paper that says can you treat this person a...

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Yes. I mean I think that certainly is the most positive outcome of it all - apart from my own sanity of course - is the fact that once you have this little magic piece of paper that says, yes, please, can you sort of treat this person a little differently. And to be honest most of the things the university are doing are all kind of really minor, but it is when you have a little piece of paper, you don’t feel like an idiot for going and asking, you know, “If I miss a couple of tutorials, instead of you just kind of not giving a toss, and ignoring it, you know, please do contact me. Please do, because, you know, if I start missing a couple, you know, then I might not go back, because once you miss a few, it makes it that much more difficult to sort of go in, and little things like sort of being picked on in tutorials. You know, asking the tutors sort of, “Please don’t pick on me, because I really, really won’t like it.”  
 
If you don’t have something formal, you do feel, like a bit of an idiot for asking. You know, it just makes you feel so uncomfortable doing it, whereas if you do have this piece of paper you can contact the Disabilities Office, and, you know, if you sort of do feel, you know, you don’t feel you want to, sort of you have to contact this person or that person to, you know, deal with, you know the sort of trivialities of existence. And they can help with that, you know they can sort of send an email. Deal with some of these silly little things that I think particularly people with Asperger's, just really suck at dealing with. I mean they really do.
 

Mark always felt different to everyone else.

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I think, it really, sort of all stemmed down to never quite feeling as though one was the same as everyone else. One wasn’t really part of ‘the’ group. People were always somehow distant.  I remember being sort of five, six years old, and my grandmother used to tell me constantly all the time, you know, “Stop acting like an old man,” because I was very serious. I didn’t play in the dirt. I didn’t you know ever sort of come home, with you know taken a knee out of a pair of trousers.  You know just these are not things that I did and I think I sort of viewed other people as sort of something odd and peculiar, something to be studied.  And you know there was always sort of ever present, particularly my aunt was one of them, constantly being told, “Smile it might never happen.” And always thinking, well surely if one is happy, one smiles, if one is unhappy, you frown or whatever, you know, and if you are sort of fairly neutral well surely, you just have a fairly neutral expression. Shouldn’t that be how it works?
 
You know. I hadn’t sort of clicked, no you are just expected to smile and grin like an idiot constantly all the time, because that is what people do and if you don’t they think there is something wrong. And if anyone says, “How are you?” the response is, “Oh fine. How are you?” People have no interest. It is just what people say and I never really sort of quite understood what was the point. You know, why do you do that? You know, it always seemed so inane and so stupid and to be honest, in many ways it still does. But now, being somewhat older, I have sort of worked out why people do it, that is just how people sort of [2 sec pause] communicate. It is just sort of vague contact with no particular purpose. You know sort of an expression of, you know, I am not hostile to you. 
 
But it always just sort of bothered me, the whole sort of pointlessness of it and being expected to basically behave in the same way that sort of the stupid little people do. You know what was the point? It just seemed, it always, as a child it always seemed just so sort of beneath me. That is very much how it felt, as though, you know, always other people were somehow some sort of a different species. Their behaviours just seemed so bizarre and seemed to pointless and so stupid. You know why did people do these things? What was the end result of it?
 
And [3 sec pause] I think I seem to have a grasp on it all now, but I remember just always sort of feeling as though I am not really the same as these people. You know, I don’t really get why they do it. You know, it makes no sense to me. And it was always very much… I mean I have heard the analogy before as sort of viewing the world as through sort of a pane of glass. You can see it. You can communicate with it, but you are not really a part of it. I think that is very apt.
 

Mark is more optimistic about his new course at university because he has a diagnosis now and can...

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...[sigh] Well, now 27, currently in processes of returning to university in a couple of weeks after multiple somewhat less than successful attempts [laugh]. I am not sure what you want.
What are you coming back to study?
I am going back to study accountancy and economics.
What is that? Locally?
Yes, yes. That’s in [city].
And what were you trying to study before?
I originally started off doing astrophysics. I was never really quite sure why. It was just sort of one of these things, knowing that from the age of eight onwards I was going to go away and do either astronomy, physics or astrophysics. That was it. Quite how I came to that decision or when it happened or what the reasoning behind it was I have no idea. I just remember knowing that is what I was going to do, based on I decided I didn’t want to be a palaeontologist anymore because it would involved digging around in the dirt and I wasn’t really having that. I was never one for, for playing around in the dirt as a child. I was always very clean and smart and well kempt...
 
So that is that. Hopefully the whole sort of university process will now be somewhat more successful now that I have a diagnosis of both being dyslexic and the Asperger's which was something that was something that was never really picked up ever before sort of be it at school or previous unsuccessful attempts at university.
 

Mark describes how he resolved to do 'normal people things' after taking an overdose during the...

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Had you heard about Asperger syndrome before then?
Yes. Although I have to say I can’t terribly remember exactly when would be the first time I heard of it. I mean I remember from being very young and always having an awareness of being somewhat different and I think sort of multiple factors could be involved in that.   I think sort of things eventually came to a head when in the summer holidays between transferring from fifth to sixth year in the high school,  ended up overdosing and ending up in hospital and sort of sat there thinking, you know, I am not really terribly happy with the way my life is. And at that point, you know, I, you know, I socialised with people in school, didn’t really at all outside of school, didn’t go to parties, didn’t to the pub which naturally every one else did do.
 
And so I sort of resolved that in that sixth year of high school,  I would do the normal people things. I would go out to parties. I would go out and get drunk and do all these social things. And thankfully, you know, my university requirements  were basically nothing, so I didn’t actually have to academically do anything that year  so I really sort of did have a year where I could go out and get plastered on a very regular basis [laughs] and it didn’t at that stage make a huge impact in my life. 
 
 I did feel it was very helpful because I had that time to do lots of things, drink far too much, learn [2 sec pause] how one behaves or is expected to behave in these sort of social situations, so that when I did go to university it wasn’t a shock. I was prepared for it all. And to be honest, I went out all the time, got drunk far too often, as many students do and academically was incredibly unsuccessful. But from a social perspective, it was very successful, I would say. You know I did all sorts of things that everyone does to excess  I think I sort of coped really terribly well with it.
 

Mark is not sure if he could deal with the 'level of intensity' involved in an intimate relationship

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I think that is particularly why I have always kind of steered away as far as possible from any sort of more intimate relationships, you know, sex is fine, no problems there. You know, lots of random one night stands. [town] is a town full of slags. I mean it is quite atrocious. It really is. But you know, that is something true, but anything more than that. I mean there was a person a couple of years ago, made it quite clear that they did want something more, and actually at one point after diagnosis I got back in contact with this person and randomly they were in a hotel in [town], and sort of went round, you know, to sort of apologise and say look basically, you know, I always got the impression that you wanted a sort of relationship to take place, and well, you know, I have Asperger's and so you know, I really sort of don’t get it. I really don’t deal well with this sort of thing, and basically it was my way of apologising, because in many ways I sort of wanted to have a relationship because that is what really you are supposed to do. That is what normal people do but being in that situation was just something I felt so uncomfortable I didn’t want to have that sort of level of intimacy, you know, I do not want to share every detailed aspect of my life.
 
You know, like sharing a room with somebody. My God that would drive me nuts, you know, it would not be happening. And, you know, we ended up having, well sleeping together and stuff but you know it was always very much…. I think sociologically everyone is very sort of programmed. You know, you are supposed to have a sort of formal, you know, steady permanent relationships, that is the goal. That is what everyone is sort of after but the reality is, it is very sort of an unknown quantity and I always just sort of avoided it and steer away from it. And even sort of at the age I am now, I am sort of not entirely convinced I would actually be capable of dealing with that sort of relationship or whether it would just drive me nuts. I mean sharing sort of, you know, entirely every aspect of your life with somebody. [intake of breath] I am not sure I could ever be truly comfortable with that.
Are you quite content on your own then would you say? With your one night stands and stuff?
Well I wouldn’t necessarily say content is the correct word. I think from a very long time ago accepted, well that is probably how it is going to be. Realised years and years and years ago that I was probably very likely to be sort of single, my entire life and for a long, long time it did bother me. I don’t think it particularly does now, but I can’t be certain whether that is simply I have just accepted the fact and grown accustomed to it that it doesn’t bother me any more. But [2 sec pause] I think there is an element that I would like to, but there would be certain elements involved in that, that I wouldn’t feel comfortable with. Certainly not at least, initially, you know, things, I think it sort of goes back to aspies not being terribly good with dealing with things they haven’t done before and dealing with the unknown and there would be such an enormous level of unknowns. And it would be sort of very intimate, very personal, you know, somebody sort of knowing huge amounts about you and I wonder whether I could ever be actually comfortable being in that situation.
 

Mark describes how 'silly tiny little trivial things' like filling in forms or going to Tescos...

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Well I think it sort of relates to the things that I don’t like, dealing with various companies not that they are my supplier any more, but having to deal with British Gas. Just chronically useless. I mean chronically, incompetently useless. The fact that you can’t a hold of them. They make it incredibly difficult to actually just pay them money and get rid of them. You know, it is silly little things, particularly like dealing with councils. Council Tax and such. You know, these stupid sort of trivial mundane things, and particularly forms. I actually loathe and despise having to fill in forms, particularly anything that comes from the government, because they are so incredibly badly worded, you know, I know it is a very common aspie thing to be very pernickety and particular about what exactly something means. And the levels of ambiguity in some of the things is just, it is atrocious.
 
You know, I have had, you know, various forms, and just sort of sat and looked at them for six months, simply because I just can’t face dealing with them because I don’t know exactly what information they want. You know, it is not clear. And I think things like that cause a lot of aspies an awful lot of problems. I have known several people who particularly in sort of applying for benefits and such and I think the sort of free bus pass thing, you know, they have had enormous problems doing it, because they can’t cope with the forms. And it is these silly tiny little trivial things that most normal people just completely take in their stride, don’t give a second thought to. Aspies, will obsess over each and every word and exactly what it means and end up sort of freaking out and not getting the things done. And losing out and then they do tend to sort of withdraw into a sort of little cocoon and they don’t want to deal with the rest of the world, because there is all these silly, tiny, little things that everyone copes with fine, or at leas they appear to, and then you feel like such an idiot for not being able to do these silly things.
 
Things like going to supermarkets, you know. I mean thank God for internet deliveries from the supermarkets. How much easier does that make life? Because I mean I used to before that loathe going to them. You know, that was the nightmare, and I wouldn’t really ever go on my own, you know, always sort of, you know, would basically wait and wait until, you know friends are going or, you know other family members as such. And then sort of go along, buy a ton of stuff all at once, so you don’t have to go back for as long as it is humanly possible. And I think in society, part of the problem is, people kind of don’t really understand why you can do lots of these amazingly complex things. I remember from when I was doing the astrophysics and you know, people were going, “Oh my God, oh you must be so clever. Oh you must be so clever to be doing that” because it has a fancy name. But yet, you know, you couldn’t do silly little trivial things like going to Tescos.
 

Mark soon realised that people with Asperger syndrome are all quite different 'and there will be...

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You sort of mentioned taking up with other people with Asperger's syndrome. Have you sort of, have you made a conscious effort to do that since your diagnosis?
Not especially. I think more than anything really just from sort of websites and forums, sort of chatting to be people, and you know, get added onto messenger and you know, you sit and you chat, blah, blah, blah. Every so often a particular website, they do sort of like arranged group meet ups. So you are sort of speaking to people on a fairly regular basis and you sort of become friends, but I mean there wasn’t anything that I hugely, consciously pursued. I mean, I think, initially, when sort of signing up to various websites, there was an aspect of, oh my God, there are other people who I can just say what I am thinking and they know what I mean, and when they say things I know what they mean. Oh my God. Oh how astounding.
 
And I remember for a month or so, just thinking how miraculous this was. That other people, they got you, they knew what you meant. And the same you knew what they meant. So that was sort of astounding, but I think to be honest the novelty wore off fairly swiftly. But from the sort of meeting people in real life and sort of, you know, knowing lots of other people with Asperger's it is not something, I have particularly overly pursued, because if nothing else, just simply because you have a diagnosis the same as somebody else, does everyone with cancer suddenly have an amazing amount in common with anyone else who has cancer? No they don’t. You know people are really quite different and the same with anything else there will be people you like and people you don’t.
 

Mark thinks that most books about autism are completely useless and are aimed at 'middle class...

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But to be honest I think sort of most books and such are completely useless. I think they are all written basically with the intention of you know middle age, middle income, Mum has just had, you know, little Timmy diagnosed with Asperger's. Oh I am going to buy every old piece of crap book that I can find that is possibly in any way, shape or form related to it. And all the books, they are all aimed at mothers. They are not actually aimed at helping anyone with Asperger's. Sorry. With Asperger's, they really are all aimed at middle aged mums for dealing with their ten year olds. You know, once you are sort of beyond, you know, sort of may be fifteen, books have absolutely no relevance what so ever, and I don’t think I personally really encountered any book that was actually aimed at people themselves with Asperger's and were prepared to deal with things on a real level.
 
I mean I did encounter one book, I particularly, because I know the people who wrote it so I am not going to say what book it is. And I remember another friend with Asperger's was looking through it and particularly thought it would be amusing to see what they had written about sex and my God, Mary Whitehouse would have been proud it was so vague and ambiguous and you know going about cuddling and kissing and it is like I am sorry yes, some people with Asperger's are going to be really quite severe, but you know, for God’s sake, you know, not everyone is. You know. You know, once somebody has sort of hit eighteen, you know, they are going to be exposed to the rest of the grown up world. You know if this book is being pitched at you know twenty something people, you know with Asperger's, you know it was just a complete and total joke. Honestly it was the sort of thing that one might expect for sort of five and six year olds at primary school. You know this is the facts of life people. 
 
And I think that all stems back to all these books, they are all aimed at mums in their forties buying books for their ten year olds and these sorts of things are simply issues that they don’t want to know about. You know they don’t want to know that little Timmy when he grows up is going to have problems with this, that, the other for the rest of their lives. You know, dealing with the Gas Company is going to be a pain in his backside. He is going to have problems with these things. You know they are all based on, you know how you can get little Timmy to fit in at school. And that is not really very helpful. You know, environments like schools, universities, are all highly constructed, you know, there is somebody there in charge, you know what happens to little Timmy when he grows up and gets a job. You know, his boss is not going to be there constantly watching over it, saying oh, you know, co workers you must be nice, you know, you can’t say, you know you can’t talk about people behind their backs, you can’t do this, you have got to be nice. And there is absolutely nothing, nothing for that. And I think it is really quite scandalous.
 

Mark talks about his experiences of commuting and how baffling his experiences were for other...

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Yet people can’t understand that. You know, filling in a form for this that or the other, not turning up to an exam because you just freak out. Yet people can’t understand why didn’t you just go? Why didn’t you just do this? Or do that? It is completely incomprehensible to them that you can do lots of what they perceive to them is something, you know, difficult, you can’t do these simple tiny little things and it makes you feel like a complete and total idiot because you know you are not stupid, you know how trivial and how small these things are, and you can’t do them. 
 
And its, I think, all sort of fairly soul destroying. You know I really do feel such a complete moron because you can’t do these sort of trivial, simple, every day things. Even sort of things as simple as you know, jumping on buses, trains. I remember from when I was commuting at various points, just getting off the train. Didn’t care what station it was, just saying no if I don’t get off the train I am going to hit somebody, because it is so busy, I just can’t cope with it. You know, other people, can understand, yes it is a crappy situation, nobody likes being on a commuter train when it is absolutely jammed packed, but you have got to go to work, so you just put up with it. They can’t sort of understand that no it is the I have got to get off it, and right now. Just have to. Can’t deal with trains when they are busy. To normal people that is nothing, I mean they just … it is, I think sort of the lack of understanding more than anything else, because as I say, normal people just kind of deal with it, it is no big deal.
 

Mark says he tends to approach people with a 'level of emotional detachment'.

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Well I think sort of particularly friendships I wouldn’t say I have necessarily overly had an enormous problem in making friends but usually sort of you get friends to a point. I remember, you know, a quite irritating, a very good friend of mine, because at one point she had sort of said I was her best friend, and you know my response was, “I think you are probably about my fourth best friend” which, you know, I was just sort of being blunt and honest, but you know wasn’t terribly nice, but I think, you know, I have always found that sort of level of emotional detachment, you know, yes I really like you as a person, but if you fell off the face of the earth tomorrow, would I be upset? I am not terribly sure I would be. I would like to think I would but I am not completely sure. And I think, you know, that if nothing else does put up a barrier. You know, if nothing else, if you can’t be sure.
 

Mark thinks that a lot of it is down to middle class mothers with too much time and money on...

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I would think probably genetics… I can’t think particularly of any other reason there would be beyond genetics. …Although I have to, well if you are looking for a more sort of fuller response, I mean I certainly don’t believe anything like MMR jabs or whatever else makes anything particularly more common or whatever, medical treatments or hormones in the water or whatever else. I think to be honest that there is lots of middle aged mums with too much money and too much time on their hands and they want an excuse for their bad parenting. More than anything I really do believe that, and I think that is where there is this incredible sudden upsurge in recent years of a diagnosis of autism and Asperger's and various other things because they want an excuse, you know, it is not my fault that Timmy throws tantrums. It is not my fault, don’t blame me, it is medical condition.
 
So you know granted it may well be but, in years gone by, you know, mothers would have taken it on the chin and just, accepted, well, you know, Timmy’s not terribly well behaved, you know, I will just have to, you know, try harder. I mean it particularly bothers me that both people and parents use things like Asperger's as a complete excuse for any sort of behaviour. There is a friend of mine who is a social worker and he was particularly dealing one day with somebody with Asperger's and they threw a wild tantrum in HMV and you know that sort of behaviour is not excusable. This person, you know, unless you are five years old, and even then, you should know better. Yes, you might be really upset, but you don’t throw a screaming tantrum.
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