Latest Blogs I am autistic / have autism / me! Playing to the beat of my drum Tom Wiles is a freelance drummer who is using support from Life Choices to develop his business and social media skills. Tom talks about what having autism means to him and how he wants to be known. Life Choices Associate Project Lead, Martin, talks to Tom about his experience of having autism, his support and his aspirations. The interview launches a new blog where we discuss the impact of language used to describe learning disability and autism. Banging the drum - written by Martin Street Tom is 27 years’ old and lives in supported accommodation in Sevenoaks. We first started working together in February 2017, when he was referred to bemix’s Life Choices project by his Kent County Council (KCC) case manager. Having been on KCC’s Autism Enablement Programme, Tom was ready to continue to develop his independent living skills within his local community. When we first met, Tom was living in a room in the main house, but in the summer of 2018, he moved into one of the adjacent flats, where he lives almost fully independently. As we began conducting this interview, Tom was just beginning to look at living completely independently in the community. As a professional freelance drummer, Tom was also keen to develop his business skills, something that would grow to be a key feature of our time spent working together. He plays in a number of local bands and orchestras, and also teaches drumming to other aspiring musicians, including young children who have cerebral palsy. We began the interview by discussing Tom’s early life and how it developed after he was diagnosed with an autism spectrum condition. Young life Martin: So, Tom, thanks for agreeing to do this. I know we’ve talked about some of this stuff on and off, but I think people will be interested to hear your story. Tom: No problem, hope it helps. M: I’d like to start with where it all started, if that’s OK. You were first diagnosed as having autism when you were quite young, right? T: Yeah, 4 or 5 so quite young for some people, I guess. M: A lot of the other people who work on Life Choices were diagnosed when they were much older: in their late teens so quite a difference. What are your memories of your early experiences of having the condition? T: I don’t remember much about when I was 4, but I found it a little hard with some of the work when I was 5 or 6. My parents got a Statement (now called an Education, Health and Care Plan or ECHP), which meant that I got some 1:1 support in class from a Learning Support Assistant (LSA). I was aware from a young age that I needed some extra support at school. M: At what point did you become aware that you had this thing called autism? T: Yeah, good question! Not really when I was younger, I just knew that I needed a bit more help than the other kids. It was really when I was in Key Stage 2, around 8 or 9 years’ old, that I began to become more aware of autism. I had annual review meetings, which I think my dad went to; I think I went to some of them. Terms like autism began to be used. These terms didn’t really mean much until I was an older primary school pupil. "I don’t really like the terms like autism or Aspergers as I feel like I get put in a box, but I had to appreciate that it’s what you deal with" M: I know from our work that you have strong views on how you feel about the terms that are used to describe people who have autism. Can you talk about that a bit? When you’re out and about, how do you prefer to engage with people who know that you’re autistic? T: When I’m out in public, I prefer to be treated as anyone else really. If people know that I have autism, I find that some people talk down to me sometimes so I have to kind of deal with it. I prefer not to talk about it really, unless it’s a close friend. I find in life that sometimes if people notice that you’re a bit different they seem to latch on to that. Maybe that’s just my experience. M: These are conversations that we’re having within bemix at the moment: what are the right terms to use. I always think it’s best to ask people who have autism what they think rather than professionals like me deciding what’s best or having the emotions for them. T: Hopefully my drumming and music can speak for itself and people can just respect me for that. Then I don’t need to prove myself. M: Absolutely! Just coming back to your early diagnosis, it’s clear that you received help and support at school from an early age, which was probably a big help to you. People who aren’t diagnosed until much later often struggle through their behaviour not being understood or from not receiving any specialist help. T: Yeah, I was probably lucky. I can’t imagine that. M: Did you go to a special or mainstream secondary school? T: A mainstream comprehensive school in Tonbridge. M: Ah! How did you get there? You lived in Sevenoaks, didn’t you? T: Yeah, I got the train on my own. My dad supported me with some travel training. We went 3 or 4 times together and after that I was fine. I travelled with a couple of colleagues from my class but then I just went on my own. M: I guess that’s no different to many other 11-year olds, right? T: Yeah, that’s quite normal. M: And how did you find that journey? T: I didn’t find the walk to the station difficult but I didn’t find the train journey easy. There were lots of noisy teenagers, which I did find claustrophobic and intimidating. But I tended to sit at the front or back of the train if it was a bit quieter, so I had ways of strategising around that. M: I’m guessing that you weren’t particularly noisy yourself at this time? T: (Laughs). No! It was a short journey but I would use it to think about my day. I’d get to school a bit early so that I didn’t have to rush. M: What sort of support did you get at secondary school? T: Quite similar to primary school. I think some of them might have seen my support plan from primary school and taken that to the next level. I had some good and some not so good LSA [learning support assistant] support in the classroom and then some extra 1:1 support for maths, English and music, but this stopped as I got older because I think the school thought that I was on the same level as the other students. M: Did you feel that you didn’t need that support anymore? T: Yeah, I did quite well in English at school. Maths was more of a struggle and it took me a couple of attempts to get my C grade in maths. I had to resit when I was at college. M: (Laughs). I was the same. I was taking 3 A-levels and retaking maths to get what was the equivalent of your GCSE C. You maybe got more help than me! T: (Laughs). I was quite lucky, the music LSA [learning support assistant] was very good. She was good at breaking things down for me and working with the teacher to help me. (Laughs, again)… I was quite a bad note-taker at school! I tried to write too much and couldn’t keep up with what the teacher was saying. Once she got to know me, she would write notes so that I could just listen to the teacher. M: It’s an interesting one: once you get that level of support, a bit like the work that we do, you get to know and understand what the individual needs and what they don’t, how they need information presented, how they work best etc. It takes time, doesn’t it? And this type of support has probably moved on a bit since you went to school. But it’s great that you had that extra support. T: Yeah, exactly. My school did have its own supported learning unit and that really helped, I think. Maybe I was at the beginning of that sort of support in schools. M: Were you happy to get support or did it ever become a problem? T: It’s a good question! A bit of a problem. Among my peers, it wasn’t the coolest thing to have someone support you in that environment. I think everyone at that age is a little bit too self-conscious and worries about that stuff a bit too much. But as you get older, you care less about that stuff, I think. It wasn’t a big issue. I never thought I thrived at school, really. I was just looking forward to leaving. I think it was at college that I realised where my strengths were, whereas at school, I was probably always reminded of what my weaknesses were. School wasn’t a very fulfilling environment from that point of view. M: How did ASD [Autistic Spectrum Disorder] begin to affect you as you got older? / What particular difficulties did you face? T: I left school just before my 16th birthday and then went to West Kent College for four years to study music. I was still living with my parents and I didn’t have a social worker at that point. We didn’t have anyone coming in from the outside to help, which in hindsight, might have been useful. My parents were supporting me with cooking and the laundry and also took me to gigs and rehearsals, which was very kind. They still do that. It was only really once I moved into supported living that I got help from KCC [Kent County Council] to begin with and then from you and bemix. That’s been a by-product of living independently, which I guess has been one of the positives. M: And as you got older, did some of the challenges that you faced begin to change? Did you become more aware of having difficulties with certain things or perhaps finding some parts of life much easier? T: Good question! I think with my drumming, I’m quite good when I’m focused on one thing, so it’s been helpful that I had this goal from quite early on; I could focus on that. My people skills improved a lot in a business context but probably socially I still found it difficult. I still have my good and bad days but I have some strategies to try and deal with those situations. It’s just a challenge that I have to keep trying to face up to. M: Yeah! We spend a lot of time talking through upcoming meetings and social/business situations, don’t we? T: Yeah! I feel like if I’ve thought it through beforehand, kind of rehearsed it in my head, I can allow it to play out naturally and be able to deal with it. I still find the off-the-cuff, informal interactions difficult. "If I’ve thought it through beforehand, kind of rehearsed it in my head, I can allow it to play out naturally and be able to deal with it. I still find the off-the-cuff, informal interactions difficult." Let's make some noise! M: Can we move on to when you first discovered music and drumming? How did that come about and who helped you? T: There was always music playing at home when I was young: late 70’s and 80’s, and some classical. My parents signed-up me up to the school orchestra at primary school. I was only about nine or ten, so quite young. I played snare drum, percussion and symbols etc. The head of the orchestra at the time, who, incidentally, I still do gigs with occasionally as he’s a saxophone player, he had a very good reputation as someone who was a good mentor for young musicians and would develop them. I think that my parents felt at the time that I needed something to focus on. I don’t know why they thought of percussion: maybe they thought I would find it hard to learn the flute or violin because of the dexterity involved. The drums are quite a big instrument. You can, kind of, just hit them to begin with! I don’t remember ever annoying them by keep asking for lessons. I think it was just their idea. From there, the conductor at school told them that I had quite good natural timing and rhythm, which some people would say you’re just born with. I was able to play in-time quite quickly. M: So, you didn’t have a drumming hero at that point? You weren’t sitting at home watching Mick Fleetwood (Fleetwood Mac’s drummer) on Top of the Pops thinking, ‘I want to be him!’? T: (Laughs) No! For me, it was more organic and getting guidance from parents. I did it at school and really liked it. I realised pretty quickly that it was something that I was good at. Having said that, I was listening to The Beatles and The Rolling Stones. I got hooked on the beat and it just seemed like a really fun thing to do, to play in time with. Obviously now, I see it from a more technical point-of-view. I played with the orchestra until I left primary school, then had a little break. Then, my parents had the idea of buying me some lessons from a family friend, who taught me some basic drum beats. I then got more professional tuition from a music school in Sevenoaks, which is closed down now. I was about eleven-and-a-half when I started playing on a full drum kit, which was much harder than just bashing a snare drum. From the age of 12, I was playing in the church orchestra every week in front of people, which helped with my confidence and performance skills. I was quite lucky that I did that from an early age. M: It seems like you’ve got these two big things going on at this time. Your academic career, where you perhaps are struggling a bit and need help, and this growing interest in drumming and music; something that you’re increasingly realising that you enjoy and are good at. T: At that stage, I wasn’t technically that great but most musicians will tell you that if you have a drummer that can at least play in time, they’ll be useful to most bands. You know, you can play the average pop song, maybe without all the fancy stuff, but well enough to give a band what they need. I would say that I was about 15 or 16 when I really got into it. I practised at home on my electric kit and had lessons every week. I did some rock and roll-type gigs with other students, which was different to playing at the church, a different way of performing. It was all good experience. M: So, at some point, and perhaps with a growing awareness of being autistic, you were thinking about what you wanted to do for a job. When did you decide that music was the direction that you wanted to go in? T: Probably quite late. About halfway through the second year at college; when I was about 18. I didn’t really know anything about the industry and didn’t think that I was good enough to be a professional, but thought that I had nothing to lose. At least at college I could pick people’s brains and find out more about the industry. M: Looking back, was there a magic moment where you thought, this is it, I’ve found the thing? T: Not just one moment, but I had some people in my life at the time who were really beginning to influence me. My cousin Jez, who is also a drummer, was very influential. He encouraged me and told me that I was doing all the right things. The Head of Drums at West Kent College was a great help. I looked up to him in terms of his playing: he had an energetic style, which I really liked at the time. I also had a private drumming teacher who had quite a relaxed style and really helped me with my technique. I was like a sponge, really, just copying people. I didn’t have much of a style myself at that time. I also met an older drummer who introduced me to jazz. We went to gigs and he really opened my eyes to that genre of music, which is my specialism and first love to this day. M: You decided that you wanted to be a professional drummer and apply to university to study music. Did you have a Plan B in terms of potential careers? T: (Laughs) Well, not much! it would probably have been something vocational, like horticulture. I don’t think I would have been very passionate about that but everyone has to do something, right? Looking back, I’m just grateful that I found music! Tom’s journey had brought him to an interesting crossroads in his life; one that would set him on the path to becoming a professional musician. In the next part of our interview, we discuss Tom’s experience of studying a music degree at university as a young person with autism, the opportunities that working with the Amy Winehouse Foundation has brought him and his ambitions to become a full-time freelance drummer.