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Life on the Autism Spectrum

Steven

Brief Outline:

Steven and his son have been diagnosed with Asperger syndrome. Steven is studying for a degree in autism using distance learning and has heightened sensory sensitivities and some OCD traits.

Background:

Steven and his wife have one son, aged 9. Ethnic background/nationality: White British.

More about me...

Steven is married and has one son, aged 9. Both Steven and his son were diagnosed with Asperger syndrome three years ago; and Steven was relieved to understand why he feels and behaves the way he does. He and his son have similar behaviours, like prowling up and down a lot, always knowing that they are right, being literal, heightened hearing and smell and some OCD traits. For example, for Steven, the number seven is yellow, the letter A is red and M is a mucky green colour which smells of petrol.
 
Steven has always tried to fit in, which is hard work. It is tiring trying to understand people. He finds that neurotypical people are not ordered and he thrives on order. For Steven, every day is like the experiencing a job interview fifty times over and while he might get used to a situation, it doesn’t mean that he likes it.
 
Steven likes having Asperger syndrome and thinks people with AS have contributed a lot to society. He feels that people with ASD’s can learn from neurotypical people and vice versa but barriers need to be removed to enable this.
 
Steven has various special interests (which his partner calls obsessions) and he spends a lot of time on these. He is studying for a degree in autism by distance learning and likes interacting on electronic forums. Because computers are predictable he is very comfortable using them, rather than physically interacting with people.
 
He is concerned that his son is not fully supported at school because teachers generally are not given appropriate training to enable this. He says couldn't do anything without his partner and values all she does for him and their son.

Steven viewed the diagnosis as a starting point for him to say 'Well, yes, that is me, I understand now why I do those things'.

Steven viewed the diagnosis as a starting point for him to say 'Well, yes, that is me, I understand now why I do those things'.

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When you came across Asperger's then and you were reading on the internet and things, what did you actually think when you recognized it first of all?

 
That was me. I think most people that I speak to, or write, well not speak to but write to on the net and stuff have explained the same feeling really that it is like opening, it is like opening a page and saying that is me. That is 100% me and that is the nearest thing to anybody understanding . I suppose it is like looking above, from above at yourself and saying that yes that is me. That is the only way I can explain it really. And it is nice all of a sudden to find out that I have got a thing about labels. I don’t think labels are all that good. I think I would like to call them more like, it is a starting point really but it is a starting for, it was a starting point for me to say well yes, that is me. I understand now why I do things and it makes perfect sense as to why I do those things. I mean why I annoy people the way I do. But at least I understand why and it is nice then to actually learn about it, and and do something constructive really about it.

Steven thinks that there are so many unwritten rules to life but nobody is there to tell you what they are.

Steven thinks that there are so many unwritten rules to life but nobody is there to tell you what they are.

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He was asked to fill a few, it was a form, to fill a form in about how he felt on certain things and one of the things they wanted to know was what do you more than anything at school? And he said to be normal. And he is very, very much aware that he is different. He is very much aware that he does do things and because he doesn’t understand the social side of things which makes it more – when you don’t know what is expected of you and yet you are supposed to do something. It is like going to, I suppose the only way I can… it is like going for a job and you get your job and then you are expected to sell a car to somebody for a large amount of money. How do you sell it if you don’t know. At school you are supposed to know how to fit in. And there is so many unwritten rules to life of how you do things but nobody is there to tell you what they are. And it is difficult and you do make mistakes and you keep making mistakes when you don’t know and you get angry with yourself because you know you are making the same mistakes but if you don’t know, if nobody takes the time out to tell you what you are actually doing wrong then how are you ever supposed to know.
 
It is like speaking a foreign language but you know only being able to write half of it down. If that makes sense. It is like, yes… some strange things happen on Planet Zog. Yes.

Steven describes how, although he has found strategies to help him fit in, life still feels like having a job interview fifty times a day.

Steven describes how, although he has found strategies to help him fit in, life still feels like having a job interview fifty times a day.

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So have you found strategies through your life trying to fit in? Is there short cuts?

You do find strategies. I mean people… it is like you learn things quite quickly anyway. A lot of the things might be broke if you don’t understand things anyway, you will devise some how, some kind of strategy to make something work. It is like if you were on an island and nobody spoke English and you were hungry, eventually, or if nobody spoke your language, no matter where you were, but if you were hungry you would somehow make yourself understood. Even if it is by only signing that you were hungry. Eventually you would do it. So strategies, yes, you do learn strategies from an early age I think and the problem is with people probably on the spectrum is that you have got a lot of information that you need to store away because you have to remember the strategies for those situations because it doesn’t come naturally so you have to pull that out of your little film cabinet that you have got in your head and play it quite quickly so you know what to do. It is not inherent really, so yes, there are lots of strategies I think that you learn. I think it just takes time.
 
I still do things now that probably annoy family members but I do things that I know with my partner I sometimes on come on, and I will say to her is everything okay because I can’t read her face and she will say that yes everything is okay. But if the tone is slightly different then it was yesterday, even though the answer is the same, then I feel that there is something wrong so I tend to pursue it to find out what is the matter but it is just that I can remember the tone exact and then it bothers me because it is a different tone the next day.
 
And I still make the same mistake even though I still well I might not ask. I always ask because I never know. I am never sure. So it is a bit of a loop and I can’t get out the loop you see. Yes.

It is back to awareness isn’t it really? It is an awful lot to expect a lot of people to be readily made to be made more aware, but a lot of it is the actual condition itself. Because I can’t … I can’t, I mean I knew you were coming today and I was getting slightly distressed, my hands were sweating and things, and it was because it was different. I didn’t know, you know, and I go through that most days like most people on the spectrum do. I mean and it will be like that in ten years, in twenty years time. It is never going to change. We might get used to a situation but it doesn’t mean to say that we particularly like it. Its … I don’t know whether you understand, whether it makes sense to you. I suppose it is like how did you feel when you went for your first interview ever? You know, if you can imagine that same interview like fifty times a day. And then you have got an idea of what it is like because … and then you get, you cover things up as well, because you do want to fit in and you do want to be like everybody else. So you, even if you don’t get things, you make it look like you do get things and then you are thinking of what it was that was said, because you want to find out ways so you carry that around in your head all day as well. As well as everything else, and yes, and then you get your overload.

Steven's vision has improved since getting his coloured glass but his sense of smell has heightened at the same time.

Steven's vision has improved since getting his coloured glass but his sense of smell has heightened at the same time.

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Sensory issues. My hearing is quite sensitive. My little boy’s hearing is sensitive. It is like hyperacusis type, it kicks in lots of sounds do bother us. Metallic sounds I can’t stand. I don’t like metallic sounds. 
What do you mean by metallic sounds?
Pans the clanging type sounds that is really hard on your ear. And they make you jump. They are not nice. And they hurt. They actually do hurt, so yes, hearing is quite sensitive and sometimes it kicks in really a lot and sometimes it will not. So just by that alone you can imagine a conversation with like three people. Sometimes it is difficult when you can’t work out which of the three people if they are talking at once is actually talking to you. You know there might be two people have a conversation across the room and you are with one person, but you can’t decipher whether you are hearing the two people over the other side of the room because they are all at the same pitch. They are all at the same volume and that gets quite stressful. But I have now got these glasses on and it is not too bad. It is easier. I am saying it has cured it but it is a lot easier. Some noises are much more easy on my ear now I wear these glasses. Sounds strange that doesn’t it?
 
But I notice that my sense of smell has been heightened because of wearing them, so … I think that sums autism up really. It is the miswiring, we are all miswired aren’t we? I don’t think there is anything wrong with us, I think they have run out of red wire when they should have used green wire, but and one terminal might be missing but it is the only way I can describe it. I don’t think I am any different than you are. I mean we are like the usual same kind of things in general but it is just that some of us like some of them more then others and a lot more intensely. Yes intensely. 
What about your vision?
My vision is. I always, I have not long had these glasses and they have really opened a lot up to me really. I used to have glasses before hand and I always thought that my vision was corrected to what everybody… to the norm really what most people do see, but I was quite astounded really that it is nothing like, I can see things a bit more three dimensionally. I can see my partner's face a lot more clearer now then I have ever been able to see. That is I think all. I think it is called cross pagnosia. It is like face blindness, a form of that, but it’s just quite amazing really as to what I can see now. Hm. Things don’t move about that used to move about. Like type   some website pages and things. So I could do bits at a time before but I would stop because it would move about. And I can concentrate a lot more now. That is it. Vision is a funny thing though because I see quite a few things definitely I suppose. I mean my website. Oops that has come off. Does that matter. I use the number seven in my own website because I see that as being yellow. Which is why my .. the title of my website is all done in yellow because that is how I see it. And I see A as being red. I see M as being like a mucky green colour and then when I see that one I smell petrol as well so. I think it is just the senses mixed. But it doesn’t happen on everything though. So … does that happen to you?
No.
So you are not from the same planet as us then.
No. unfortunately, no!

Steven describes how people with Asperger syndrome can focus on tasks a lot more than most people but the task has got to be something they want to do.

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Steven describes how people with Asperger syndrome can focus on tasks a lot more than most people but the task has got to be something they want to do.

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I can be a bit abrupt with people apparently but I didn’t realise I was. I thought it was being honest really but yes, it is quite straightforward really. I work with some good people at the minute that there are no pressures, there is no if we don’t want to do anything, we don’t have to do things and it is good. That is what you need. I think there are lots of people with autism in general that can contribute such a lot to society that there is only supposed to be something like ten per cent of us that work but I think there can be something like seventy per cent may be that are more than capable to contributing but are denied that access because of other people’s preconceived misconceived ideas of what autism is and the fact that they feel that they might have to make changes for us.
Well yes, they have to make changes for lots of things but it doesn’t mean to say that if it means that some of us with AS want to work in website design house let’s say and they might have to alter some of the lighting just to help us to work. We could contribute probably as much if not more. It is one thing, I mean Asperger's people are you know people on the spectrum can probably code just as good if not better than other people. Well there would be no Friday afternoon code would there because we wouldn’t be worried about going out on Friday we would get the job done. And we would be late out as well because we would make sure the job is done. We can focus on tasks a lot more than most people but the task has got to be what we want to do which I understand is probably why we might have to find the niches at work that can take into probably account of some of our special interests but we can still contribute as much if not more.

Steven talks about how much he and his son value his wife.

Steven talks about how much he and his son value his wife.

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How long ago did you meet your partner?
About fifteen years ago. And she is really, really good. I couldn’t do a lot without her. Well I couldn’t do anything without her really. And then she has got not one but two of us on the spectrum, to consider, so it is you know. … It is a good thing that she is there. I mean she thinks that we don’t value her but we do really. We just like to keep her working a lot - if that makes sense - we would be … she is really, really supportive. And it would be nice to do some things for her sometimes, I think, because she is always doing things for us, which is good.

Steven talks about how what a relief it is to interact on the internet rather than in person.

Steven talks about how what a relief it is to interact on the internet rather than in person.

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Yes. I have got a lot of friends on the internet. Well I say I have got lots of friends, my partner says I have got none. But on the internet I have got lots of people that I do write with. People that have gone through the same kind of thing the same experiences and they tend to be people that you can relate more to because of the difficulties that they have and I go on some forums for some parents and may be offer up the Asperger's side of things, may be coping strategies that might work. But they might not be able to see. Not to say that I am the expert because I am not, it is just that it is things that might work for me or my son that may work or may not work for them. So yes, I do about… there are about thirty different forums I write, they are not all autistic forums but its… it is a big part of your life though because it is your life isn’t it, really? 
What the interacting or having Asperger's?
Both. I think to interact it is nice to actually I find it sometimes such a relief to actually talk to people, well you don’t talk. People say they talk on the internet. They don’t talk, do they, really? They only type, but when you type to somebody in America or Norway who has got the same condition although they might present differently but they have got the same condition and you can relate to them straight away and whether it is because you have got the same perspective on things that you can actually have this conversation and there is less chance of being misunderstood then may be me talking to you for the next hour where there might be some bits where we may find some communication difficulties. And then I would get stressed and you would probably get stressed because I don’t understand and I it is like every day we are in that same thing every day with people, so it does tire you out. Yes.

Steven thinks there is a lack of knowledge about autism in schools and recommends some books he's found useful.

Steven thinks there is a lack of knowledge about autism in schools and recommends some books he's found useful.

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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 Rothbaughan 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.

Steve was recently contacted by someone who bullied him at school.

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Steve was recently contacted by someone who bullied him at school.

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It was like most children’s really. I got some good parents. Quite supportive. Used to be on my own quite a lot, lining up soldiers, like everybody does but more or less, I didn’t have some very good experiences at school. I didn’t like school very much. I was almost the odd one out. I were the clown to try and fit in. But not really, not very good. No.
 
I had somebody from school contact me a while ago who who did apologise for being like he was with me at school. And I thought he was going to die. So it was like a last I will clear my conscious thing. So I asked him if that was the case and not to contact me again. So that wasn’t very good. Although it is probably good because he was trying to realise what a nasty person he was. But I think people realise when they get older that they, I think bullies never really change. I think they just change to the same really.

Steven thinks people on the spectrum like computers because they are safe and predictable.

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Steven thinks people on the spectrum like computers because they are safe and predictable.

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There is just, I think computers are a big part of people on the spectrum because we know, I suppose it is the predictability thing, you just switch it on and the same screen will be there and it is not going to be a different person if you like. Like a lot more to computers because of our wiring I think isn’t it? I just think its, I don’t know. Just… there is a safety aspect with it as well I think. It is the predictability is that one of us know what is going to happen. I mean nobody I know who is on the spectrum worries if the computer does something wrong, because we expect it to go wrong at some stage. And it is usually during a process that we are actually pushing it to its limit, whereas if it is with a person, I don’t know whether you are going to break down the conversation if you like, or not understand the conversation, or be hostile. I have got no idea of when that is going to come in and that is always a constant worry is that what if they think I am weird, what if they think I am strange, what if they don’t understand, when they don’t understand what will they say? Yes.

Steven thinks that 'the genetic finger print is not perfect'.

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Steven thinks that 'the genetic finger print is not perfect'.

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I don’t think it is the MMR. I think it has got anything to do with the MMR. I think there is occasional there is occasions when you are going to get environmental autism I think, but on the whole I think it is just something genetic. You get things that happen genetically, you know a finger print doesn’t work quite right, if its … if you can imagine dipping your finger in ink and putting it onto paper, eventually the print is not quite full and that is how I see autism being. I think it is just the genetic finger print is not perfect. I just think its I think that is the only way I can describe it really. I think its yes, just a finger print that doesn’t work right. I don’t think there is any way of you know getting it. You can’t catch it. As I said before I don’t think you can do anything. You get families where it might miss a generation. It tends to be more in the boys. But is it all in the boys because I feel sometimes the very complexity of it that may be that girls in the same family have got it, but it is actually presented totally different and that is another thing whether they understand. You know that is a new thing that may be needs to be understood is Asperger's syndrome or what appears to be Asperger's syndrome to most people in boys, is it the same in the girls? I don’t think it is. I think it is just another end of the spectrum itself. When you start bringing the sexes into it you get hypersound you get hyposound. You get people that activity go looking for sound and people that actively avoid it. You know you have got people that on the spectrum that have got Asperger's and are male and therefore you could have a totally different female version of it. It makes sense, but I think it is something that needs to be explored. It will probably be an aspie that finds out the truth on that one. Probably be yes, somebody with Asperger's will find out and it will probably be a man. It could be a woman though couldn’t it?
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