This article is part of the Online Extra section of The Autism Issue from The New Idealist magazine. You can read the full issue here.
Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.
The New Idealist met with the team behind the Autistic Society Greater Manchester Area, which is supported with grants from the BBC Children in Need Fund and the Zochonis Charitable Trust to provide social, leisure and life skills support to autistic people and their families.
Many younger members grow up to become adult volunteer mentors and The New Idealist met one of these members; 19 year old Nathan Foy (who featured in a BBC Children in Need video with former Doctor Who David Tennant and was subsequently invited to the Houses of Parliament), as well as Key Worker Paul Nugent to discuss the role of the charity. Here are the highlights of the discussion.
LA (Lydia Andal, Managing Editor The New Idealist): So, this is the New Idealist with Nathan and Paul, and Paul is the…
P (Paul Nugent): Key worker
LA: …Key worker, and, Nathan, you are autistic..?
N (Nathan Foy, Volunteer): Yes, I’ve been a member and now I’m a volunteer as well.
LA: OK, and you were just saying before that you joined four years ago and I know you just started, but can you just tell us again, why did you join?
N: Well, [it was] through my Mum really because she, well of course, was looking out for places and they’re extremely difficult to find at first – until you actually get into that network.
But the year before I left school, I’d just turned fourteen, because of a few difficulties that were going on there and I was quite depressed. [I’d] left school and I was extremely low on confidence, couldn’t leave the house for many months because of what had happened, mainly, quite a long story…
But I came here and, at first, I couldn’t really talk to anyone for ten months because I was not very confident, but then I started to and I got into it (laughs).
LA: So, you left school at fourteen, did you say? Did that mean that you didn’t get the chance to complete your qualifications, or were you offered additional support?
N: Well, I went to an internet school after that, but that didn’t really work out. So coming into year 11, I was home tutored and I did maths and English in the end.
But then, this is 2011 now, I went to college after that – Sixth Form – because we had a chat with the Principal and he sort of did a special exemption type thing because of all the stuff I do online… You know how autistic people have, sort of, interests and things that they’re really good at, that’s what my forte is, I suppose.
P: He was thirteen.
LA: So what are your interests?
N: The main thing I do is tracking storms and stuff like that.
LA: I wish I had a copy of our last issue, which was actually an extreme weather special, believe it or not. I’ll give you a link… thenewidealist.com and it will bring up the extreme weather issue with Cody Lundin, I don’t know if you’ve been following him on Dual Survivor and all that? Sorry, I interrupted you there, carry on (laughs).
P: How many hits have you had on your website now?
N: Oh, gosh. It’s up to 767,000 now. On the YouTube channel anyway
N: (Laughs) I do, I do best.
LA: So what are you doing, what’s on the YouTube channel? What sort of topics do you cover?
N: It’s mainly tropical storms and hurricanes, stuff like that. This week, I did a documentary series about education type things, so with people who aren’t really in the know. There are a lot of them around here, as you would expect. It’s where you can learn more about it.
LA: And what are you trying to make people aware of specifically? How they work, or that there’s more of them or..?
N: That was this week, yeah, but mainly I do tracking, as it happens, and that’s what I’ve been doing for two years.
P: The radio station.
N: Oh (laughs)
CF (Assistant Editor, The New Idealist): So modest (laughs).
N: Naturally. Yeah I do volunteer at a learning disability radio station.
CF: Is that online?
N: Yeah, it’s LDOK, that one. That’s the name of the station…
LA: And what do you talk about on that?
N: Anything and everything. It used to be mainly focussed on autism but it’s widened out to learning disabilities. So, I do sort of a news section and play some music, and an interview here and there, when we can get hold of people!
LA: And do you have like a set time every week or something?
N: Yeah it’s every two weeks every Thursday, my show, but it’s full, there’s load of people on there.
LA: So are you doing one tomorrow?
N: Not this week; it’s next week.
LA: And what will you be talking about next week, do you know or do you decide..?
N: Haven’t a clue (laughs). I always research the latest news stories the night before.
CF: Do you do interviews and things?
LA: I was going to say, what sort of people do you interview?
N: What we’re starting to do is interview people involved in learning disability stuff and doing… a bit of a life story on them and, at the moment, I’m doing myself; someone’s interviewing me. That’s what we’re starting with and then we interview other people. Maybe Paul would want to be interviewed?
P: I’m normally comical. You tend to do the serious news.
LA: So when you found this society [and] that brought you out of your shell a bit, it’s sort of given you a bit more confidence, you were saying…
N: It did because I didn’t have any friends, so these are the people I can probably relate to closest – apart from online – in real life. This is the best, and it’s good. And sessions with Paul, I talk to him quite a lot, which really helps as well.
P: It’s just nice to be able to talk, isn’t it? You know, sometimes, you don’t have the confidence to talk to people who don’t understand.
LA: So in what way is it you feel that people don’t understand you, then, if that makes sense?
N: It’s nothing new. I don’t know; it’s hard to explain.
LA: OK, so is it that when you came here, you just felt sort of that you could connect to people better?
N: Yeah. Well, it’s difficult for me because I’ve barely had any interaction with people outside the spectrum, because of the way it’s been. I mean, I went to college and I made a few friends there, a little bit, but I left there after six months because I got depressed and I couldn’t really handle the work anymore. But I still got a distinction for the first year, in I.T.
LA: I was going say, so what did you study, so in I.T. was it? OK. So with school, is that sort of similar with college, in that is it that you just felt sort of isolated?
N: I guess, I just don’t think I could do it at the time. I could probably do it now, and that’s why I’m looking for another course again. I might be starting one in August, I don’t know yet.
LA: And now you’re a bit older, do you think there’s anything that school could have done to help you that perhaps they didn’t do at the time?
N: Oh, there was… I mean my mother really did all she could with that because the support, well, the support said that they would be there but they weren’t in lessons, and, yeah, things just didn’t happen properly. It was quite a blur to me because I was very depressed.
CF: So when you get kids coming in now with the same problems, what kind of advice do you give them, since you’ve been through it?
N: I guess, having the experience, you know that if someone’s depressed and can’t really see a way forward, you probably can. I guess that’s the best way to explain it.
CF: Yeah, it gets better.
N: If you want to add a little drama to it, when I did leave the school it ended in a suicide attempt, really. That’s how it all came to a head.
LA: Oh dear…
P: Which is expressed in [the Children in Need video – which you can watch here].
LA: Is it? I’ll have a look at that.
N: I mean, I don’t really mind talking about these things but, of course, it’s quite… morbid.
LA: I think that’s what we’ve come across a lot, working on this issue, is that depression can seem to go with [autism], as people get older…
LA: Yeah, because of the isolation…
N: I think it’s very difficult if no one understands you.
LA: I was going to say, non-autistic people that find themselves socially isolated, that’s a key [factor] for depression anyway. So, obviously autistic people that are naturally, unfortunately, finding themselves more socially isolated; I think that’s a natural consequence, in some ways, why is why these sort of societies need to, you know, get in.
P: It’s wonderful to be able to say to parents, you know, of kids who are eleven years of age and who are having a lot of difficulties that I have seen eleven year-olds, and we’ve even had sixteen year-olds, who have developed and they’re not in the same place. It’s lovely to be able to give the parents confidence, because their worry, obviously, it’s their biggest concern, isn’t it – their children’s welfare.
LA: So, what happened with David Tennant then? What’s this about?
N: Children in Need appeal film, basically…
P: They gave us funding a few years ago… and obviously the format of the show is to raise money and they had little four-minute clips on the different groups they’d been helping, and that was our part of the show. What we had done with the money, and to raise some more, and it was all about Nathan.
N: Children in Need invited us to Parliament at the end of last year, didn’t they?
CF: You went to Parliament?
N: To meet the whole…
P: Fun and Friendship… that was the name of it and all the different groups they help, all the other charities, and we went up to Scotland to meet everyone else and all the other charities. It was a fantastic experience.
LA: (To Nathan) So, now you’re a volunteer, what would you do today? This is a drop-in day isn’t it?
N: I’m just here as a member today, because it’s the adult group. But sometimes, I’ve been very busy recently with all my other work, but when I have time to volunteer I come here with the younger kids, the ten to fourteen group.
LA: Keep an eye on everything…
N: Just make sure everything’s going smoothly, because sometimes one or two can be quite explosive, can’t they?
P: Yeah, if they’re not understood, you can imagine, it comes out in that form.
CF: Yeah, any group of kids, really, is…
P: Do you feel like you understand?
N: Yeah, it’s much more profound, really, when they’re younger – the traits – because a lot of it is learning how to, well, how other people do things, isn’t it?
LA: So when you can see that someone’s starting to get frustrated do you feel that you can help them better..? Do you see what I mean..?
N: Possibly, I’d like to think so, anyway. I mean, I was like that a lot.
CF: What kind of things do you do then to teach people to, I suppose, socialise?
CF: Yeah, or with the group. Is it just lots and lots of interaction, or..?
N: It’s mainly for fun, really. I mean, they do all sorts of activities to try to engage them.
P: …they might sit there… working out a way we can engage. Whatever it takes. Whenever we have the new ones in on Monday. Mario Kart, a simple little thing called Mario Kart. They spend all night laughing with each other.
N: I think with a lot of them it’s trying to get them out of their own shell. I think it’s nice to talk about… try and find out what their interests are and talk about that.
CF: How many sessions did it take you to kind of come out your shell?
N: Ten months.
CF: Ten months?
CF: So, you’re really long-term; you really don’t give up on them.
N: I wouldn’t.
P: It can take years, a long time.
CF: But, obviously, worth it.
P: Yeah, course it is. Just look through their eyes and, if we can empathise… that’s the main part of this job, isn’t it, you’ve really got to empathise.
LA: Do you think that autism is accurately represented in the mainstream media?
N: I used to be quite opinionated on this, years ago, but I’ve sort of not really been thinking about it recently. Certainly one of my bugbears is when people call it an illness or a disease, and that still happens quite regularly.
LA: We’re trying to correct that, aren’t we, with this issue?
CF: Yeah, one of the guys we interviewed…
LA: Yeah, I did an interview with Stanley Lapidus, who is the CEO of a big, American bio-science company that’s currently running the largest research on autism in America, with the goal of finding a blood test on autism, and he, being a scientist, he uses that terminology. And we didn’t think much of that, did we? So, the goal with this issue, why we’re trying to do all this sort of thing, is to try and show the more human side to autism…
N: Some people still talk about eradicating it and that sort of thing, but, you know…
P: It’s a part of you; it’s who we are. I’ve had kids saying “why would I want to be different? I love the way I am. Why would I want to be different? If I didn’t have autism, I wouldn’t be me.”
LA: Yes, exactly. You can’t separate the two.
P: Of course you can’t; it’s part of their personality… I always say to the younger ones when they’re referred: look at all the great inventors. Why are we not embracing autism? It should be there at the top of the school curriculum: look after the autistic kids because they’re the ones with our future in their hands.
N: I wouldn’t be so public, personally, but…
P: Well, it’s true.
N: Not every autistic person…
P: Well, we definitely know that too.
N: Just like anyone else can do great things.
P: Yeah, course they can.
N: Just adding a bit of doubt.
LA: So what are your views on that now, then, because you said you used to look at it..?
N: Well, they haven’t changed (laughs).
LA: Does that mean that you read the media less, or that it turns you off to read that, or..?
N: Sort of too busy doing my other stuff to think about this sort of thing to be quite honest, but, yeah, my opinions still stand on that sort of thing. I think it’s common sense, really.
CF: I suppose you’re creating your own media as well now if you do your own radio show.
N: (Laughs) Well, yeah.
LA: And what do you think of the phrase “neurotypical” being used to describe non-autistic people? Because sometimes people use it and sometimes people…
LA: Do you disagree or do you agree?
N: I don’t really frown upon it. I think because it’s so widely used… I don’t think, can anyone think of a better word?
P: I think I said neurologically normal, didn’t I?
N: The best way to describe us is neuro-diverse.
P: Well, perfect.
N: Which is a word that’s bandied about a bit.
P: I do say a lot about being wired up differently. That’s why we think of things differently, but never in a negative way.
CF: Just different?
P: Yeah, just different. Wonderfully different.
LA: Have you ever taken the AQ Test or the Aspie Quiz?
N: Yes. [To Paul] You don’t know about this.
LA: Did you think the results were accurate?
N: It was ages ago now… OK, the AQ test is out of what? 46 or something like that?
LA: Yeah I think it’s 32 or above…
N: That’s right. Oh, I can’t remember what I got now, but, recently, it was probably below 32 because I’ve learned how to, sort of, deal with everything.
LA: So it’s changed, is that sort of what you’re saying, from what you would have got a few years ago to now? Those results would change?
N: Yes, I’ve become more self-aware.
LA: That’s really interesting.
N: Absolutely, because five years ago, six years ago…I’d react much differently – unrecognisable to Paul, at least…much different on a neurological level. For an idea, finding out what to say, that was difficult but also I didn’t know of any of the social cues or whatever. I didn’t know that it was customary to say “Hi, how are you?”. I just talked to people about what I’m interested in, that’s all I ever did (laughs).
It was like one-sided conversation all the way.
LA: And where did you learn? Was it through this?
N: Yeah, and also online, because that’s where I started making friends, online, and I just sort of picked up on it, I guess.
LA: So through sort of forums and things?
N: It turned out that way but initially I kept in contact with my friends from school, and then people at the internet school, and then I joined a forum at school, yeah.
LA: So you sort of taught yourself, in a way, as well as…
N: Yeah, like most other things.
LA: Yeah, that’s really interesting. What do you think, are there any particular topics you think we should be addressing in the next issue that cover autism at all..? If there’s anything off the top of your head that you think, you’d like to get off your chest, or that you think… There might not be…
N: I think the UK is one of the leading countries. I think other countries need to be looked at, I guess…
LA: Yep. That’s a good point.
N: From what I’ve seen, anyway, the UK’s one of the best countries for understanding.
CF: Is there anything more that we could do, though, that the UK could do?
N: Well, probably. There’s probably always something. I’m probably not the person to ask.
LA: What do your friends think, online? Do they ever say “it would be useful if…”? Because this is a great Society, I suppose; because you’ve got this a lot of your social needs may be met in that way, whereas if you didn’t have this Society it might be a bit different, mightn’t it? It some ways?
N: Yeah, sure. Most of my friends are on the spectrum. There are a few people who aren’t and I’ve told one about it and they’re OK with it, you know.
It’s quite daunting telling people about it.
LA: So not everyone knows?
N: Yeah it’s quite something when you rev yourself up to tell people about it, for any reason, and they say “what’s that?”. And you have to go through half an hour explaining it.
LA: So how would you explain it?
N: Em…That’s difficult. It’s a different way of thinking.
P: Leads us to the link: Thinking Different is another site he set up (here)
N: I did a website about autism. I don’t really use it anymore, though, but I did have that.
CF: What did that consist of?
N: It was going to be about autism and news and stuff like that, and it would have had a database of autism services around the UK, maybe beyond, but it’s quite a big project.
CF: Great idea, though.
N: Now, I look more towards doing media-based stuff, you know.
LA: As in?
N: Filming and stuff like that.
LA: So do you have a weblink for that? Is that up?
N: I can’t remember if it’s still up anymore, but you can try it. It’s thinking-different.com.
P: We tried hard. We put a forum on it, didn’t we? We wanted a nice forum, but it didn’t catch on because of Aspie World and other things…
LA: Yeah, that’s quite a big one, Aspie World, isn’t it?
P: It would be hard to draw them away from that, wouldn’t it?
N: I’ve never heard of Aspie World.
P: Well what’s the one that the… What’s it called, sorry?
N: I use two main ones, Wrong Planet and Aspie Village.
LA: Oh yeah, I was thinking of the first one, Wrong Planet, actually… What was the other one, Aspie Village?
N: Yeah, it’s a UK-based site so it might be more interesting for UK-based people. It’s quieter as well, and a lot of people on the autistic spectrum like a quieter atmosphere.
LA: Wrong Planet is very American. So when you look on the forums do you find that, because obviously everyone’s got different opinions on there, do you feel that you’re quite comfortable talking online?
N: Yeah, absolutely, at least on there. I don’t really post there anymore, but I have been quite an active poster. When I started, I couldn’t really stop. Just became confident with it.
CF: What kinds of things do you talk about, did you talk about? Just everyday things?
N: Yes that’s how somehow I became the second top poster on there, but there you have it.
LA: And that was on Aspie Village?
N: That was on Wrong Planet.
P: Became a bit of an issue, didn’t it?
LA: Wow on Wrong Planet. You’d have to go some to become the second top poster on there.
N: I was going for it; it was a competition. No, it wasn’t (laughs)
LA: Why did you set Thinking Different up originally, what was your goal behind that?
N: I don’t remember anymore. It was just something…
LA: Because that’s quite a specific… Thinking Different, that’s quite a statement.
N: I wanted to be a part of things, I think. I wanted to make a bit of a difference myself, if I could.
P: You’ve always said that though, haven’t you; that you’d like to make a difference?
N: Maybe I have.
P: To the autistic world.
CF: Make what kind of difference? The representation and things like that, or..?
N: That’s certainly a key part.
CF: What was your specific aim?
N: Yeah, that would be a key part of it, but I think the main inspiration was because it’s been so difficult for my parents to find these places. It would be nice to have a central location where everything’s available.
LA: That’s really interesting.
CF: Good idea.
Nathan runs the storm-tracking website, Force 13 and hosts a fortnightly show on Thursdays at LDOK Radio online. You can find out more about the Autistic Society Greater Manchester Area at www.asgma.org.uk
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