Transcript: Hidden disabilities: Ryan Fleming

Michael McEwan speaks to Ryan Fleming about growing up with a 'hidden disability'. Ryan is on the autistic spectrum and tells us about the challenging, as well as positive experiences he has faced from childhood right through to adulthood.

Podcast Episode: Hidden disabilities: Ryan Fleming

Category: Disability 



What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MM - Michael McEwan
RF - Ryan Fleming

MM Ok, now on, and this series of hidden disabilities, we are going to speak to Ryan Fleming about the barriers and challenges that he faces day to day. First of all, Ryan, going back to when you were younger, what obstacles did you face?

RF Well I faced quite a number of obstacles when I was young, my big one I would say, was when I actually started nursery school because I simply couldn’t do it, it was far too much for me, the playing and all that, with other children, just simply did not happen and I don’t really think you got much help back then when I started, I mean you are talking the late 1990s here, you didn’t really get much support. The nursery I was in was quite unbalanced, there were very few boys in the nursery, it was mainly girls, which meant the type of activities you were doing maybe weren’t my cup of tea, but what had happened was, I also have struggles, shall we say, with imagination so it meant that playing games and, imagine this and imagine that, was very difficult. It meant that I couldn’t really work with the other children because they could think of things and stories and make things up and I simply couldn’t see it, and also another struggle that I faced when I was younger was order and control, because I simply had to have everything timetabled and ordered and I had to know what I was doing at all times and nursery simply didn’t do that for me, there was too much free time and it simply didn’t work. I needed control over my day and nursery didn’t get that. It just simply didn’t work.

MM So, did you feel out of place at nursery?

RF Yeh, I definitely did. I always felt out of place, I used to go and sit, maybe sit in a corner, or something like that, because I simply couldn’t do it and you were put in groups, I mean, I remember I was put in the pink group, or something, and you were maybe, I was the only boy, and the rest were all girls, which wasn’t a problem as such, but it meant that they were all sitting and playing families and things and I simply didn’t understand. The nursery staff did their best to try and include you but they couldn’t force you, you know, because I used to kick and scream because I simply couldn’t manage it and it was a big obstacle really when I look back because I ended up, I only did 1 year of nursery, I think, because it was simply too much and the nursery staff really had a difficult time with me because of all the obstacles and they didn’t know, I don’t think they were up to a level of training to know how to deal with someone like myself.

MM So, do you think training is a big issue and skill?

RF Yeh. I think it still is, going from what I hear nowadays, I mean, I know a lot of people in a similar situation, maybe even younger as well, and they all still say the same thing, they know how to treat certain types of disabilities, such as your classic, shall we say, your downs syndrome and things like that, that are well known and have been for years and years and they know how to deal with them, whereas, autism is one where you can have 2 people with autism and they are completely different, so the struggle is how do you train people when it is so varied? But I think there are some things that are exactly the same in everyone and the imagination and the social are 2 of them, because everyone with autism will struggle with social imagination and social communication, so any help that they can do, even if someone in the groups with the child to help them and try and get them to understand things, and using more visual approaches is something that I have later found helps me and I think, even in childhood, that would have helped as well.

MM So, you started school, what support did you…?

RF Very little when I first started back in primary school, because it was a big change, obviously, from nursery to primary school, but I actually suited primary school because I went in and you were told you had to sit down and you had to work, it was from 9am until 3pm, there was no play, you had to learn. That was what you were there to do, you weren’t simply left to just go and run around and what have you, which really did suit me, so I think when the teachers saw that they thought, oh, no problems there, no behavioural issues, he is fine so just let him get on with it. Also, my academics were fine, I was passing tests and learning how to read and write, my levels were ok, so therefore, they would say there is no problem. However, you did experience problems because at, say playtime or lunch time, you were having the same problems you had in nursery, except you were a wee bit older so you knew more, which actually made it harder I think, because when I was in nursery I didn’t really notice much, but when I was in primary school and I could see people playing in groups and things and I was just there myself, it became quite difficult and I always wanted to just get back in the classroom and get learning. I did get some support as I went through primary school, when they noticed things were maybe needing a wee bit of help, but I wouldn’t say that I got help from the start.

MM What about the pupils, were they kind of, shall we say for a better word, helpful with your disability or did they…?

RF I think it was actually, they were maybe a wee bit unsure and I think that goes on throughout your life, particularly with a disability like mine, people aren’t sure how to react. They don’t want to say something in case they maybe think you are autistic and you can’t speak, or you are autistic and you might lash out, they don’t really know. I think that’s true even when you are younger, they just think, that’s the special children, as we are known, just leave them, them will be fine let them get on with it. So, they weren’t hurtful but it did make you a lot more vulnerable, shall we say, towards being the butt of a joke or you are being told to do something and I would take it literally and go and report it and it was a joke. It would end up that you were the one who was getting blamed for something and it wasn’t actually your fault in the first place.

MM You have answered the first 2 questions, but something strikes in me where more awareness is, ok maybe not in nursery, because your still younger and naive I would say, but when you moved up to primary school, and secondary school as well, and you went to a mainstream school so did that help you?

RF Yeh, I think it did, I mean, I know people who have gone to special needs schools and who have gone to mainstream schools and I would certainly say mainstream school was definitely the right choice for me and that’s something that I think we are doing right now, we should be pushing more and more people into mainstream school because it does help a lot in later life and I think it’s definitely the right way to go. I mean when I was in school, we have moved on a lot, I was in school with people who had varying disabilities, right through physicals, wheelchairs and what have you, right through to dyslexia and things, through to people with downs syndrome and other complex problems, but they still enjoyed mainstream school. They were treated well and, as long as they got the support they need, which I found for the majority of people they do get the support they need, in that kind of scenario, downs syndrome or other conditions like that, that you are born with and there is no denying that, I think they are supported well and you learn well. I think being with their peers is a good thing, it’s definitely a good thing.

MM Did you find it difficult to make friends at the school?

RF Yeh. I would say I did and I think that continued on right through all of my school years and I also think that I didn’t make friends, as such, I made acquaintances, I would say. When I was at the end of secondary school I stayed up to my sixth year, and I really liked it and enjoyed it and I also think, because everybody knew you, alright they maybe weren’t your friend, but they would never walk by without saying hello or good morning and I liked that, I think that was really good, so although I did find it really difficult making friends, I only maybe had a handful of true friends, but I would say that I made a lot of acquaintances and people that were nice to you. They weren’t hurtful towards you and I think that was quite good. They said I was quite easy to get along with, which helped me because you always think, in secondary school in particular, there are a lot of cliques and people go into their groups and this person won’t talk to that person, and things like that, but I didn’t really have that, I would talk to anybody, it wouldn’t bother me who was this or who was that, I would just speak to them. I never considered who they were, or whatever, I would just speak to them and I think that helped me as I went on.

MM So, it helped your confidence as well?

RF Yeh.

MM So, you went to mainstream school, again, did that feel helping you when you got older…?

RF Yeh, I think that made the transition into college much easier, I think. I know people who have transitioned from special needs schools into college environment and its night and day. Also, everyone I have spoken to, again this is just my personal experience, have went from special needs schools to college, they are put into courses designed for them, they are put into life skills course, which I did a life skills course myself when I was in high school and it didn’t work for me, but a lot of these people they say that’s our options, it’s life skills and learning for work and I thought, well what are you actually learning? What’s your qualification? And they say to me, “oh I don’t know, this is what I’m doing.” I will say, “what are you doing next year?” and it’s, “oh we move on to year 2 but the course is the same”, and I say, “well no, I don’t want that.” Whereas, when I was in mainstream school it was academic stuff you were doing, or you had vocational options, you did that, that’s true, but for most people it was academic. It was what could you do to help you get a job or go on to university, or something like that, so that’s where I do feel mainstream school really helped me.

MM So, when did you realise you might be different?

RF I would say it was actually quite young. Once I was in the primary school, maybe a couple of years, because I was in a road where I lived and it was nearly all kids, but I didn’t really like going out to play or that, I would much rather be inside and be fixing things or doing things, and my homework was the first thing I did when I came in from school and things like that, which was different to everyone else that I knew, I mean, everybody else, you know, the boys would come in and put their bags down and would be straight out playing football or playing sports of some sort, whereas, I would come in and before I could even consider going out to play, if I did, I would have to sit and do my homework, that was my priority and it wasn’t a priority of anyone else I knew. So, that’s what I would say, maybe primary 2 or 3 I noticed I was different.

MM In what way?

RF I think my attitude to things was different, you know, like my attendance was a top priority, homework was a top priority in the schools, which was different. No one else I knew was like that, I mean, I would never miss a day of school unless it was doctor’s orders, which was different as a lot of people I knew would say, “oh I can’t be annoyed going to school”, whereas I loved it. I got up first thing in the morning and put my uniform on and I would love it, I was really enjoying my school and I would hate the summer holidays, which entirely opposite to everyone else I knew. So, that’s something I would say that clearly made me different, and I think another thing is that I enjoyed spending time more with older people rather than my peers at the time, and I think that’s still true to this day, I still find it easier to get on with older people than younger people. I think that’s something that I did notice was different.

MM You got the one to one support, didn’t you?

RF Yeh.

MM How did that make you feel? Because everyone was concentrating on the teacher, but you had 2, you would say elements, to your school day, the teacher and your support, how was that?

RF When I did eventually get the support in the classrooms in various different forms, going to and from the classroom or actually in the classroom, it did make a great difference to me. It allowed me to focus on learning, rather than worrying about everything else, because I knew that if I missed something, if I was maybe concentrating on my work, and the teacher says something and I would miss it, then I know that my assistant would pick that up and that really took a burden off me and it enabled my work to really improve and it improved a great deal.

MM How do you, if someone said to you, “Ryan, tomorrow you are going to be in a special needs school, a disability school”, what would your reaction be?

RF I would probably say it’s a step backwards, that would be my first instance. To me it’s got to be mainstream unless it is completely not going to work, because you ned to be around people, I mean, it’s all fine learning things and feelings and all that, but the best way to learn is real life experience and it’s looking at people and how people interact and that’s how you learn, because I couldn’t do eye contact ever, I never ever could, but then I went with the National Health and it was the Speech and Language therapy, and I used to get a woman who would come in to the high school every week and we would sit down and do eye contact, and it was simple things, such as, she would hold a pen and she would hold it away from her and then she would put it to the other side and then she would bring it in to her face and she would just tell me, during this, follow the pen, and then she would take the pen away and I am looking directly into her eyes, and that was a way of learning eye contact. Same thing with feelings, we used to have to sit and look at picture and work out what the feeling is here. All these things helped but, again, they were probably a wee bit late for me, I mean, at secondary school most people can do eye contact and they know when someone is happy or sad when they are, you know, single figures, maybe 6 or so they know all that, but with me it was a lot later. That was when I would say my support really started to get up to speed, maybe 3rd year of high school I would say it started to get better.

MM Looking back at your life so far, when you went through school, would you change anything or would you just keep it the same?

RF I probably, despite there were positives and negatives, I probably would keep it the same because I think I am quite happy now. Alright, I went through times, when I started high school, I honestly thought I was losing it, I thought I was going mad, but I still would keep it because I think it really makes you a better person at the end of the day because they always say, and the doctor says this to you, if you can deal with what you went through when you transitioned from primary to secondary school, you can deal with anything. Because it was so hard and I didn’t get any support when I transitioned, and they said, if you can deal with what you when through when you didn’t eat or talk or do anything, you couldn’t cope with it but you came through it and if you can deal with that then you can deal with anything. So, I think that really helped me going forward.

MM I think this is a key point of this series, but also this interview, did you have a choice about what school to, so Ryan it’s up to you, it’s your life, so what I am really saying is, did people speak for you or did Ryan speak for Ryan?

RF I would say the majority people speak for you and I would say that didn’t change till fifth year of high school, because there used to be meetings and you would have your support teachers, educational psychologists from the council and various different people, and then eventually the parents started getting involved, which was a good thing because they never used to be allowed in, they were and then other agencies that you were supported by can go as well, and then eventually you can start to speak. I think it helped but, no, definitely earlier on people speak for you and that’s it, you know, you don’t decide, it’s decided for you because some of the things, perhaps subject choice, for example, you would say, “oh I would quite like to do that”, but they would say, “oh no but this is better for you, you could cope with this better”, or something like that. One of the famous ones was, “well it’s easier if you go into this class because that means, for the support arrangements”, and things like that, so it wasn’t your choice at the end of the day, it was, “this is the resources we have so it you want support you need to do this”, basically. That was it, we only have a set number of classroom assistants, one to one support, whatever. Not linking colleges, obviously, they are different, but schools only have the local authority budget so they maybe only had ten classroom assistants, but everything was all planned out. You had an assistant but then the first week of term a non-supported person falls and breaks their arm and they suddenly can’t write, they need someone with them and, depending on your level of support, if you were near the bottom then your assistant had to go and they had to go with the person who couldn’t write. So, it was a struggle at times and people, as you say, people would speak for you and say, “oh well, you will just need to do your best.” That was it, and I did my best but it was a lot harder than it should have been.

MM So, moving on now, as we all get older and move away from school, how has your life moved on? How has it changed over the years?

RF I think it’s changing all the time. I would say, this is me going into my fourth year of college and I think it’s been a transition period and I think it’s a good thing. I am getting better and more articulate, you could say, and more assertive in planning and going forward. I’m obviously learning more, not just in the classroom, but I am learning more real-life experience. You get a lot of work experience in college, which I think helps me, in particular, in terms of going forwards. So, I would say my life is moving on and it’s going in a positive direction and I think that’s the key thing, it’s got to be moving forward. If you are not moving forward that’s fine, but as long as you are not going backwards.

MM Going back to the first question when you spoke about, you weren’t very confident, are you confident now?

RF Yeh, with a lot of thing, yeh. I think a lot of it is through experience, you know, you need experience for so many things and we hear that in everyday life now. I definitely think experience of dealing with social situations, you need that. I remember speaking with a doctor about the eye contact, because that’s a key thing with autistic people, and I still struggle with it, it’s still hard, but I couldn’t look someone in the eye and I remember saying to the doctor, “how can I move on in life if I can’t look someone in the eye, I will never be able to have any relationships, I won’t get a job”, because if you can’t look your boss in the eye then he is not going to hire you, he or she won’t trust you. so, you know, I said, “you need to learn things.” Gradually, through pushing that I have managed to get access to support and, obviously, they are under cuts and they are struggling so it’s hard to get, and it still is, however, getting a wee bit of support here and there to help you, maybe just a couple of times, to do new things, it really does help and it pushes you forwards.

MM It’s very good as well because when you, I mean I was in a similar boat to you where I did go to a special needs school and people spoke for you and I didn’t feel right, and stuff like that, but the point I was coming to was, because you’ve got the confidence now, when you said earlier on that you couldn’t go yourself, now you can go out yourself to the shops and stuff like that, because you are never in the house, you are always out and about. I suppose that’s a good thing as well.

RF Yeh, also for me, because I’ve not just got the disability I’ve also got mental health issues as well, but something as simple as going out a wee walk to get a paper just helps. For people who have mental ill health, they will understand that, but for your average joe they won’t understand, they won’t get that because people that you rely on, maybe they are working all day, they come in and just want a wee rest. Someone like me who has maybe been in all day, there is nothing better than getting out a wee walk or going to a shop or something, it just takes your mind off things and it’s a real help. That I can do that now is definitely a bonus.

MM Do you feel as though there should be more role models, like yourself and me and other people with different types of disabilities?

RF Yes, definitely.

MM I suppose what I’m trying to say is that we all bring something different to the party, I mean, you might bring something different to me and I might bring something different to you, you know, different experiences as well.

RF I definitely think that’s a key thing. I mean I know, for example, I have known you for I don’t know how long now, but it makes me proud and fills you with a wee bit of hope, in a way, that when I open my paper and I see maybe Michael is there talking about something, and it’s something important, something that needs to be spoken about, who else is doing it? It’s nobody, but you are doing it, and you are just a guy like myself, and I think we need more of that because that fills you with hope as well, and I know speaking to guys who don’t know you, but when they say that as well they think, oh that’s good, that’s really good. I say, “but he is just an ordinary guy, you have just got to try your best to make a difference in any way you can,” but I do think that role models are needed, they are definitely needed. A lot of different types as well, particularly on the television or the news, you know, whenever you get a disability correspondent or a disabled reporter, they are either blind, deaf or in a wheelchair. That’s still, to this day, is considered disabled, they don’t see anything else by that, but we ned other role models like yourself and me and various other people who have hidden disabilities, speak about it. I think it’s coming, I do think it will happen, it’s just quite slow.

MM Do you feel as though, as well, that people should look at the person and not the disability?

RF Yeh.

MM A perfect example is a boy in a wheelchair, they should look past his disability and say, “oh well Chris or Mark can do that.”

RF Yeh, exactly. It’s about what you can do, at the end of the day. It’s what you can do because everybody, regardless if they are disabled or not, will have things they can’t do. They might not have any disabilities, but they maybe can’t go up a height, or whatever, you know, everybody has got something that they can’t do. So, you know, it’s not right to focus on certain people and say, “oh he can’t do this”, or, “she can’t do that”, you need to try and focus on the positives. More so now, you know, because like of jobs, for example, it’s so hard to get a job nowadays, you need to focus on the positives and, although I do think it is important to respect someone’s needs, you know, you can’t just say, “oh they will be fine, they will do it”, you have to respect someone might need help or there are some things that they maybe can’t do. That’s fine, but try and find something they can do then, it’s not as simple as, they can’t do that therefore he is never going to get a job. You need to find alternatives to things.

MM And more recently, I want to finish on this question about, you have been getting support from the LAC, that’s the Local Area Coordination, just tell us a bit about, well first of all, what is Local Area Coordination? What does the actual person support you with?

RF Well, Local Area Coordinators, the one I use is from Enable Scotland, and what they do is they basically come into your life when you want to make changes in some way or other, big or small, whatever, but they come in to make changes. They are not social workers and they are not support workers either, that’s the key thing. They are there to make changes and they are really good. it’s and under used service, I would say, because the amount of work they can do. I’ve got support from a woman called Susan and she is very good, I have been working with her for a number of years now. It was the school, it was the support coordinator at school that put me in contact with them and I am very thankful that they did because they help you with things that you would struggle with and, perhaps, make changes that you want to make but don’t know how or are maybe a wee bit scared, and that’s fine, but they help you with that. For myself, it’s great because Susan has helped me, I have joined a football team which I really enjoy, I can use public transport and go out in my local area, which really helps me a great deal. The good thing is with them, they can come in and out of your life as and when. At the moment, I am maybe not receiving a lot of contact with them, but that’s fine because I’m quite happy where I am just now, I am working along quite fine, but there may come a time, for example, when I finish college, when I will need some support in going into employment or voluntary work, whatever that may be, and they can come in for that. They are really good. It’s a team of people for East Renfrewshire, where I am, and they are all willing to help which is really good. They run events as well, wee drop in events about various different things, which is good because for myself, maybe disabled people in my local town and you maybe go by them in the street and you don’t think anything of it, but when you go to one of these events and you meet them and you start having a wee blether or that, it’s really good because then you have started a friendship basically and it really does help. It’s a really positive experience that I have had with them.

MM Well it’s been a pleasure speaking to you, Ryan, and that was a good conversation, thank you.

RF That’s great.

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