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Simon - Interview 16b

Age at interview: 22
Age at diagnosis: 5
Brief Outline: Simon, aged 22 was diagnosed with autism when he was 5 years old. He has developed his own strategies to cope during social situations. Simon is interested in animals and aims to find employment in this area. Simon does talks on autism to help people to understand.
Background: Simon is qualified in animal management and does voluntary work. Ethnic background/nationality: White British

More about me...

Simon, aged 22 was diagnosed with autism when he was 5 years old. Simon is currently living with his parents and does not wish to move out although he can envisage living with his girlfriend in the future. He describes his parents as “absolutely brilliant” as they have supported and encouraged him in his ambitions, which have included learning to drive. 
 
Simon feels there are both positive and negative aspects to having autism. He describes autism as having “a strange sort of social system” which means he has difficulty in making friends, trusting people and understanding and expressing emotions. He has developed strategies to help him manage social situations, but he sometimes feels these strategies are over-complicated. Simon explains how he likes to negotiate his own way of doing things and so doesn’t feel he particularly needs extra help though he feels such help may be useful for others with autism. Simon is interested in animals, video games, playing pool, watching sport and creating comics. He feels his tendency to obsess has helped him to focus on and succeed in his interests.
 
Simon used to volunteer at an animal rescue centre until he had to stop due to depression. He would like to work with animals in the future. He currently gives talks about autism for parents of children with autism and professionals working with autistic people. He finds searching for paid employment frustrating and feels that people in the job centre misunderstand his condition. He feels this makes it particularly difficult for people with autism to find employment or claim their benefits.
 
 

Simon talks about self harm and feeling aggressive.

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But yes, it’s, it’s been really, really hard sometimes, especially to do with the emotions and that. I have to say, my emotions, they are a little over exaggerated. For example if I’m angry about something I may be completely aggressive towards people. Just because I’m angry, because my emotion of anger’s just over the roof. It’s not like normal anger where you get angry and cross with something, mine just makes me go mad basically. I just… and sometimes this can cause me to self harm. I will admit I do tend to hit myself sometimes. I don’t mean to do it, but it’s sort of a form, the way my emotions just become so confined, and once again because we’re unable to talk to people about it, it just builds up and builds until eventually it just bang, it explodes and some people hit themselves, I hit myself, which, you know, I don’t like to admit it, but you know I have to be honest about things like that [small laugh].
 
And other people in some cases with, you know, with autistic can sometimes hurt other people. Lash out at them, and sometimes we do this, because that person, in some case, has either, the fault for us getting upset about it or angry over with, so because we can’t exactly go over and go, “Look, you really annoyed me. I didn’t like that. Can you not do that again?” We may go over and just whack, hit them. It’s very simplistic isn’t it? But it’s not a good way of going about it. 
 
But that’s how, you know, because it’s, because we need to see our emotions, because we feel that ‘yeah, that’s showing that we are angry’ [laughs]. But the person on the receiving end may not understand that and this sometimes can, especially at school, especially at school, you know, if someone annoys you at school, and bang. Teacher' “What did you do that for?” And of course, once again because I can’t talk that well or socialise that well, because of being autistic and that, I just get told off and put into a room, isolated, and there have no reason why I’ve done that, whatsoever.
 
 

Simon has passed his driving test and has learnt to try not to be distracted by the shapes and...

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Well after I left college I learnt to drive.  And, yes, that’s another big step, hurdle, to sort of get over and that was, it was basically it was my decision really I wanted to learn to drive, because the trouble with, with working with animals, there’s a lot of travel involved, you have to drive everywhere. So I thought right I’ve got to learn to drive.  And so I got an instruct… you know, booked up for an instructor, lucky enough I had a friend of the family had this strong instructor who’s meant to be really, really good. So I had him, and it was brilliant, a really good driving instructor. Really laid back, understood my problems. He didn’t sort of, you know, he just wanted to understand a bit more, which was, was really strange, you know, well, he was a stranger at first and just wanted to know, you know, how it could affect my driving basically. And it can affect my driving, especially with sometimes the concentration side of it, because obviously with our… basically we have like a high sensitivity to things.
 
For example it can do with shapes, colours, and if we see like a road sign, we may look ‘oh that’s a nice road sign’ while we’re driving. Driving a car you’ve got to concentration on the road. Yes, that sometimes can happen, so you sort of have to really, really focus. And trying to focus on something that, you know, you just keep going with it really. But I had a really good instructor and sort of gave me advice and stuff, you know, helped to sort of… helped me out basically. And it went really well, and I passed my driving test, and got a car, yes.
 
 

An expert in autism has helped Simon deal with his depression.

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Unfortunately during my last year of college I did suffer from depression which for an autistic person is not good, because obviously the whole emotion thing. It was really, really hard, and that affected me at work really and because I weren’t able to sort it say it, you know, or even understand how I was feeling half the time. Because, you know, depression’s a hard thing to describe really. 
 
You know, you’re just down all the time, and yes, it was really, really hard, and unfortunately it did take an effect on my work. My last year of college, there was a moment at college where I just thought about just not bothering with anything anymore, because it was just at point where I felt nothing was working for me really. Just differences became over complicated and it was really, really hard, and thank goodness that someone actually noticed that, because obviously I can’t, I can’t tell myself because obviously my emotions aren’t really my thing, but, someone noticed at sch… at my college and they then informed my parents and then my parents then informed someone that was an expert in autism at the time. Someone called [name] who used to basically, well she was just an expert on the whole thing and she sort of got me really sorted out and stuff. Helped out and that and just expressed to the teachers and stuff you know, that, that I had this problem, and you know, it wasn’t necessarily, you know, my fault that I was depressed and stuff, which is what, you know, I had to deal with it really.
 
What do you think caused the depression?
 
You see that’s really, I think it was a mixture of things. What happened was, which I think was the main cause, the main problem, what caused it mainly was, when I joined college, we had a class and stuff and you sort of had to make friends all over again, after you leave school which was quite difficult for me obviously. And I made some really good friends and throughout each year of my course, and I passed the first course and then gone to the next level, I had always a friend there. And when I got to my third year, that sort, those sort of friends I made had started leaving. 
 
Did you take antidepressants?
 
No I didn’t. I didn’t take any medication. I tried not to take any medication for my autism whatsoever, even some days where my anxiety and my insecurity is really bad I don’t take any medication for it. I do have some like rescue remedies and stuff as I call them upstairs and stuff, like just sort, like basically just like relaxing, they’re not medical, like doctor medication or anything like. Just basically natural remedies and stuff like that, and that sometimes does help. I didn’t take anything when I was at school, no, college I mean, I didn’t take anything, which might have been a good thing, it might have been a bad thing. But I feel that sometimes with medication it sometimes suppresses the issue rather than solves it. So, yeah, that’s my opinion. You know, for some other people it may help, and some others it may not.
 
 

 

 

Simon's friends helped him understand his feelings for a girl who wanted to be his girlfriend.

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Yeah, I try to yeah. And I also have a girlfriend as well. Who I see and that regularly and stuff like that. She pops down and says hallo and stuff like that, which is another thing that I could mention.
 
About what? How’s that been, having a girlfriend?
 
Very strange, it’s taken some getting used to. Once again because my social system, you know, developing you know, to someone that becomes a friend, becomes a girlfriend, that whole process really. You know, and loving someone and stuff like that. You know, it’s a whole big thing really for me. And it was slow at first. Half the time, I had to get people to tell me, that, you know, this girl really, really liked me. She wanted me to, you know, go out with her. But for me, I don’t click onto that sort of thing [laughs]. Because like the emotional side of things. And someone actually had to tell me that, you know, my feelings were the same, because obviously I don’t know that myself half the time, and it just started off from that really, good support from friends really. And it just started off like that really, just gradual process really.
 
 

Education professionals should have more autism awareness training, and they should involve...

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I think, I mentioned the job bit, haven’t I already? I think definitely that’s an area to improve on. I think more of an area at school like having, actually training teachers to spot people with autism and how, you know, how to deal with it, would be a lot better, rather than sort of just pulling us out of class and telling us off. Because you know, it’s not necessarily our fault, because you know, how we express things is completely, to someone with not autism. They’re able to sort of tell when they have a problem. We, we can’t do that. So yes, definitely in schools and also more from the government as well, I think there needs to be a separate area, I think separated in the educational side and the job side.
 
You know, a special side, you know, they have the educational side of it and just call it education and stuff like that, they should separate into special educational side, like where the people with autism and other people with the problems actually helping the schools deal with it. Because I think that would be really, really important for schools and that to have that, instead of just having some guy that says, “Oh yes, I know all this, I know all that.” Just does nothing, has noth… I mean they say they have understanding but to be honest, the best people to understand it, are the people that actually have the problem. Even they may not know it, but you know, they can tell you, you know, as long as you keep things very simplistic, you know, in asking me questions they’d have to very specific with it obviously.
 
 

Simon is happy with his parents and talks about the potential problems with moving, such as...

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And are you happy living here with your parents or would you like to move out?
 
No. I’m absolutely happy here, because once again I’m used to everything that’s going on here. I think moving out, like a house or something like that, it would be a lot of hard work for me. Because what, you’ve got, you know, somewhere different, somewhere new, somewhere you’re not used to, and then you’ve got all the packaging to do, like moving in, you know, where you’re going to sleep, you know, different smells in rooms. You know, sometimes, you know, rooms, places smell a bit weird for us, you know, which may sound very strange to some people, but we have very high sensitivity in you know, smell, eyesight, and hearing and stuff. And sometimes there may be even a bit of noisey. It might be near a train station or something and that’s a nightmare, because obviously we have troubles with sleeping as it is, because obviously everything all going on and that trying to sleep is a bit of a nightmare yes. So I wouldn’t, I’d rather stay in an area that I know of rather than move elsewhere, yeah. Just, you know, help me feel relaxed really.
 
 

Simon thinks that teachers assume you can't do anything, rather than acknowledging you find...

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Because there’s nothing more wrong than sometimes at school that teachers sort of, they see that something is wrong with you, and they immediately assume that you can’t do anything. That you can’t do that, you can’t do this, you can’t do that, and that’s a completely wrong perspective for going about it. Being autistic just means I find certain things harder than other people would. It doesn’t necessarily mean I cannot do it. It just will take me a longer process to sort of be able to do that certain thing. But mostly it’s to do with repetition. I have to repeat something consistently for me to be able to do it then afterwards. Just do it, just like that. 

 

The Jobcentre staff had 'no clue about people with autism'. Simon was told to go to a doctor to...

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Well, well what happened was, after I learned to drive, there was a, this was when the recession kicked in unfortunately and, the jobs that I was going to go for, no longer were available. And the next part was trying to find work, and that’s been an absolute nightmare basically. A real nightmare. 
 
First of all, I’m having to go to the Job Centre. You know, this is me, on my own, going to a Job Centre, you know, with all my social problems and stuff like that and anxiety problems. I can’t physically do that. So I took my parents with me and I was absolutely, really, annoyed about how I was treated at the Job Centre. They had no clue, whatsoever, about autism or people with autism. How it affects us and stuff like that. I just felt like I was just there for a show really, and all they were was just all talk blah blah blah this, blah, blah, blah that. And I am on Incapacity Benefits and basically Job Seeker Allowance and all that stuff. 
 
And to be honest I just don’t want to be involved with the Job Centre really. I’m not in contact with them whatsoever. I’m sort of just trying it on my own. On my own two feet really, because then I can do it at my own pace. Because half the time, going to a Job Centre, they don’t care what you have to say, and are like, “I will get you do this.” “We’ll get you work here.” “We’ll get you to work that.” Well no, no, no, no, no. You know, I want to do something that I’m interested in. I don’t to just, sit, sit on a trolley at Asda or something or push a trolley around at Asda, you know, or Tescos. You know, I want to do something interesting. But they obviously have no idea. In fact the worst thing about it was, they actually wanted me to go to a doctor so he could then prove that I had autism. Yes. I know. Tell me about it. That was fun. And the doctor…
 
Why did they want you to do that?
 
Because they needed proof, they needed medical proof. And I’m sorry, but I’d been diagnosed at school for all that time, and they had no evidence. And I had to go through all that. You know, I had to go and talk to this doctor who had no clue himself. You know because, no offensive but doctors, they don’t tend to specialise in, you know, conditions like autism. I mean some do, some don’t. But most of the time they’re more into like, you know, medication, you know, diagnosis, you know, with problems they can see, you know, if you’re sick or something like that. Not a mental condition, you know. That’s something else. And there’s, there’s me having this full conversation with this doctor, literally teaching him about autism. I mean, then he goes, “Oh yes, you’re autistic.” Then fills in this medical form. There you go, evidence. Show to people, yes, blah, blah, blah, everything all went through. But, it should never be that hard. 
 
You know, because it’s hard enough as it is, to get, you know, to get support and that. But to go through the whole process of going, you know, to a Job Centre, full of people, you know, that’s hard for us. Then going to tell them, that we have this problem. Telling them. You know, I was lucky enough that I was sort of able to tell them about my problem. But for most other people, you know, with our social system, we’re not going to do it. We just won’t go. It will just be all too much for us. 
 
But yes, I was really, really annoyed with it and I think that’s something that they really need to improve on really. Because it’s horrible. It should be easier for people, you know, with autism, you know, to get a job or to say, you know, or to claim benefits,
 

Simon likes Wikipedia and also found reading the Beano helpful when he was younger because the...

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And what about information. Do you read much about autism or not?
 
I do, there’s a really good website, you might have heard of it Wikipedia? I do occasionally have a look on there and see all the new stuff they come up with involving scientists because obviously it’s like a big encyclopaedia, and people find out more stuff, they fill it in it a bit more. So, yes. I do occasionally read some stuff and that, but that’s another thing that took me time to be able to do, because obviously I wasn’t able to read at first. It took me a while to sort of understand, you know, how to read and stuff and a lot of the time I had to associate the words with a picture or something. Physically see the word to then be able to understand what it means, and then be able to read it then. And I found it easier to read comics at first, rather than books. I started off with comics because obviously you’ve got pictures and stuff like that. A bit of colour, stuff we like. And you know, it’s a bit, one in particular I did read a lot was the Beano, which was really, really good. It helped a lot actually, because a lot of the stuff in the Beano is over expressed like the emotions are over expressed, so they’ve got someone screaming, their mouth’s really wide open and stuff like that. So that sort of helped me associate things and stuff as well, which helped.
 
 

Simon thinks that people with autism should be used to help support people, as they actually...

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I think, I mentioned the job bit, haven’t I already? I think definitely that’s an area to improve on. I think more of an area at school like having, actually training teachers to spot people with autism and how, you know, how to deal with it, would be a lot better, rather than sort of just pulling us out of class and telling us off. Because you know, it’s not necessarily our fault, because you know, how we express things is completely, to someone with not autism. They’re able to sort of tell when they have a problem. We can’t do that. So yes, definitely in schools and also more from the government as well, I think there needs to be a separate area, I think separated in the educational side and the job side.
 
You know, a special side, you know, they have the educational side of it and just call it education and stuff like that, they should separate into special educational side, like where the people with autism and other people with the problems actually helping the schools deal with it. Because I think that would be really, really important for schools and that to have that, instead of just having some guy that says, “Oh yes, I know all this, I know all that.” Just does nothing, has noth… I mean they say they have understanding but to be honest, the best people to understand it, are the people that actually have the problem. Even they may not know it, but you know, they can tell you, you know, as long as you keep things very simplistic, you know, in asking me questions they’d have to very specific with it obviously.
 
 

Simon thinks he has overcomplicated interactions because he is so conscious of them.

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So sometimes it can be a bit of a burden, because sometimes when I sort of talk to people, I have to draw a very fine line for letting them talk, you know, about their, the things they like before I start. Because I know that as soon as they ask me about something, and it’s something I’m really into, I’m just going to go chat about it forever basically and that may disrupt for them really. Disrupt the whole conversation because it’s like there’s just me there talking [laughs] about my interest. So yes, I have to draw a fine line.
So if you have a chat with friends is it always, you’re always conscious of it?
 
Yes, I’m always conscious of that little bit. I’ve always got that inkling, and you say, “Oh go on talk about that.” And it’s like “well no”, I’ve got to sort of limit myself to it really. But I’ve just sort of just developed all this all over time really and just learnt about it. Maybe I’ve over complicated my social system or maybe I’ve understood it a bit more better. I don’t know.
 
Why do you think you might have over complicated it?
 
Well because [laughs] when I go and talk to people now, I immediately ask them a certain amount of questions and then from there on, after I’ve talked to that person and gone off elsewhere, I will then literally try and remember everything I talked to them about and remember everything they disliked in the conversation, everything they liked about the conversation and then I try next time improve on it. Yes, I know this really sounds really strange, but improve on my conversation from last time [laughs].
 
It might just be me or it might be something to do with autism. I don’t know. But yes, my social system’s quite complicated and sometimes I just won’t even bother trying to make a new friend because I know I have to go through all that process of you know, finding out everything about them. Yes, I know, scary [laughs].
 
So if you weren’t monitoring yourself do you think you’d start talking about something you’re interested in and then you won’t pay any attention to how they’re responding to you, you just talk?
 
Yes. Yes. Literally I just carry on. I mean sometimes I do open up about, you know, what I’m interested in and stuff and half the time we’re very clever who we choose as friends, because we choose people that are interested in exactly the same things as us. So it makes the conversation a little bit more easier. Because we can, sort of talk I don’t know, for hours about, I don’t know, a video game or something like that. Or a movie or a stupid toy or something like that. You know, we can go on… so sometimes we’re a bit choosy in friends. We tend to choose people that are interested in the same thing as us. And sometimes this can be a problem, especially when we’re younger at school and stuff. For example if the teacher’s got us to, I don’t know, done like a little group activity or something, and may not necessarily want to be involved in that group activity because it’s with a toy that we don’t like. So just don’t bother with it. 
 

 

 

Simon sometimes finds his obsessions comforting. Computer games for example, are more predictable...

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And half the time it’s to do… it’s a comfort thing really, it really is a comfort thing. Sometimes, our obsessions become like sort of like a comfort really, for example if I had a really stressful day at school or something like that, I’ll just sort of play on my video game or something like that because it just made me feel comfortable with my obsession. I was playing this game over and over and over again because it just helps me feel at ease because it’s something I like and it’s, you know, I know how it responds you know, it’s very basic really and sometimes, a lot of autistic people we really, we’re great animal lovers. We like animals a lot and half the time the reason for that is, for me, or personally, is because they don’t talk back. Their social systems are very basic, you just, you go up to them, you stroke them, they respond you know, they respond more we can see it, whereas people they talk don’t they, about stuff, whereas animals they can’t talk, so they show it in physical form. So we can see it, which makes us more comfortable about it, because actually we can see what’s happening and stuff which sometimes really helps.

 

Simon has studied the art of conversation. He is learning ways of managing his emotions more...

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And once they’re your friend, do you still monitor the conversations?
 
It becomes a little bit more relaxed, I will say that, yes. A little bit more relaxed, I don’t tend to do it as much. But I do tend to find out, what they’ve been up to most of the time straight away, and all I do is try and sort of feed in the information [laughs].
 
I, for example, for the weekend they all went out with their parents, went on holiday or something and then I try and feed out as much information about their holiday as possible for just being nosy I suppose, really. But it does become a bit more relaxed when I’ve made friends and stuff. I don’t tend to sort of monitor myself as much and stuff like that.
 
So if you weren’t monitoring yourself do you think you’d start talking about something you’re interested in and then you won’t pay any attention to how they’re responding to you, you just talk?
 
Yes. Yes. Literally I just carry on. I mean sometimes I do open up about, you know, what I’m interested in and stuff and half the time we’re very clever who we choose as friends, because we choose people that are interested in exactly the same things as us. So it makes the conversation a little bit more easier, because we can, sort of talk I don’t know, for hours about, I don’t know, a video game or something like that. Or a movie or a stupid toy or something like that. You know, we can go on… so sometimes we’re a bit choosy in friends. We tend to choose people that are interested in the same thing as us. And sometimes this can be a problem, especially when we’re younger at school and stuff. For example if the teacher’s got us to, I don’t know, done like a little group activity or something, and may not necessarily want to be involved in that group activity because it’s with a toy that we don’t like. So just don’t bother with it [laughs]. 
 
And also I wanted to bring up, because you mentioned earlier about your self harming. Is this a regular thing or is it just occasionally?
 
It’s occasionally when I’m frustrated, I can tend to do it. Yeah. If something, I mean most of the time it’s when it builds up I tend to do it. Like if something has built up over time, I tend to do it. You know, but yes, I’m dealing with it very slowly. I’m learning other ways sort of dealing with my emotions and stuff and I think that’s another key area. I think people can help. You know, talk to parents about how we deal with the emotional side and that. Because we do sometimes become quite violent and stuff, you know, and that’s obviously not very good, you know.
 
 

It took Simon a while to learn what a friend was and explains how he finds it hard to trust people.

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But school, and other matters besides college were really, really hard. Because I went to mainstream school, I didn’t go to sort of specialist schools or anything like that. And it was really, really hard. Because part, part of autism is we have a very sort of strange sort of social system. We find it really hard to trust people and we don’t necessarily like making, find making friends incredibly difficult. Mostly because we’re scared or we don’t know how to make friends, it’s sort of something that doesn’t really develop enough. And when it does we usually tend to go with only a selected few people that we call friends or even use the friend term lightly, it takes a while for us to sort of get to that level, you know, of making a friend really, and sometimes, because we’re like that, because we’re so insecure most of the time and find it hard to sort of socialise with people we tend to get called loners and stuff like that and sort of, they think we’re strange because I was just not talking to anyone, on his own most of the time, and partly just because how complex our social system is really. 
 
To me, a friend is, you know, someone you can trust and obviously once again we have a lot of trust… find it hard to trust people, and sometimes when I was little, I didn’t even know what a friend was, at all. I had no idea what a friend is, it was like, oh made friend, I’m like, “what’s a friend?” and until people actually told me what it meant, actually showed me, because sometimes with words, it’s like people tell us a word like a friend you know, like emotions, like love and stuff. We need to actually see, physically see it in front of us and then someone to tell us that’s what it is. And that can be incredibly difficult emotionally, especially you know, because we’re always insecure about, you know, basically we don’t want other people to worry about us. And we find it so hard just to, sort of say that, look, you know, this is worrying me and stuff, because we feel like the backlash and stuff. And sometimes we don’t even know how we’re feeling half the time. 
 
 

Simon became depressed in his third year at college and found that people didn't respect each...

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So I started my last year of college and I had to go through the whole process again of making friends. And it was really difficult for me because I sort of had this sort of friend, and he sort of had been with me for the whole course I’ve started off in basically and now he’s gone and it’s like, sort of a bit being left on your own again basically and I found it really, really hard, and that kind of really affected me and another thing was the class I was in was quite a few characters in there and a lot of mixture of people and there were a lot of arguments in the class. A lot of friction because some people in the class disagreed with certain things other people in the class with and most of the time it was just whole lessons with argu… arguments basically and one main subject that caused a lot of arguments was the whole fox hunting subject, because there was some in my class who was, worked on a farm, and then there was some people that didn’t work on a farm, and they sort of didn’t understand that the person working on the farm didn’t like the foxes, because they’re killing their crops and stuff, and basically the whole argument, thus, basically what all the argument was about a few people didn’t sort of quite respect other people’s views in my class. That caused more problems and that basically all built up together and then yes, I sort of got depressed from it really.

 

Simon gives talks to parents about 'how autism affects him'.

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Well so far, this is like a little job, I’m doing right now. I actually started doing my… these talks and stuff about autism for parents and stuff. It started off as like a little something, I don’t know, someone said, “Oh why don’t you talk it and stuff?” And I said, “Alright then. I’ll give it a go.” And it started off as say a little group, like four parents and stuff. And then that slowly developed into like a big group of 27 parents and stuff, all just me talking and giving them advice about autism and stuff and how, you know, how it affects me and stuff and how they can help people with it and stuff like that. That, sort of is my job at the moment. That’s what I’ve been doing. Just out, you know, doing all sorts of talks and stuff and giving parents advice and stuff like that. So I just, so far it’s been going really well. I’ve got to just keep, keep myself in the open really and show them I’m there if they need it and stuff like that. You know, keep yourself going really. Yes.

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