I’ve been working with Eugene at Bradford Autism Support for just over a year now. I admire both his tolerance and charisma, although I wish he’d stop eating cheese and onion crisps in the office and wafting that nasty smell in my face. Since most of my blog gives a first person account of life with autism, I thought it would be interesting to get the perspective of someone who’s neurotypical, but works in the field.
On a Saturday afternoon, just after finishing our morning shift at BAS, we sat down for an interview. Working with kids has obviously increased Eugene’s patience, which was lucky for me. I’d bought my laptop along to record the interview, but forgotten the mouse, which rendered the whole laptop useless. We searched the Bradford library in vain for a spare computer, eventually settling down in a local internet café, where I did my best to match the speed of my typing to the speed of his talking. The following Q and A is verbatim, and explores the challenges and the joys of working with autistic kids.
Please note that the names of any service users have been changed to initials in order to protect their confidentiality. The image used in this article can be found on the Telegraph and Argus official website http://www.thetelegraphandargus.co.uk/news/11826672.Autism_charity_needs_to_expand_due_to_demand/
Gwen: So Eugene, how long have you been working at BAS?
Eugene: It feels like all my life. Since last September, so… a year I guess. A year and a month.
Gwen: I understand you started as a volunteer. What inspired you to spend your free time working with autistic kids?
Eugene: Well initially I was searching for volunteering opportunities because it would look good on my personal statement for university, and I didn’t want to do any old volunteering. I wanted to do something meaningful with people. Also, I saw working with autistic children as a great learning opportunity. I wanted to find out more about the condition.
Gwen: How much did you know about autism before you started?
Eugene: Not a whole lot. I think I had the general view of autism that people had… as in awkward in social situations. I didn’t have a whole knowledge of autism and how it affects people.
Gwen: And how has your view of autism changed during the time you’ve spent working with people on the spectrum?
Eugene: Ermm… I think the main thing is that I understand what it is… as in a fundamental problem with their imagination, social communication and social interaction. Now I know that autism is much more than people being awkward in social situations. It can affect their lives from their morning routine to how well they play sports… it can affect any area of their lives. But, the main thing I’ve learned is that in some cases it can be a hindrance but I don’t see it as a normal disability. With a normal disability they can’t function without our help, but with autism what’s made them disabled is the world we have created, which isn’t really suited to them. I say that because some people with autism excel in many areas of life, they can be amazing actors or scientists. So autism itself is a not a hindrance, not a disability. There are loads of really intelligent kids in our workplace. I didn’t really think like this before I started working at BAS.
Gwen: If someone asked you to describe autism in one word, what would you say?
Eugene: *laughs* Still can’t think of a word… autism is too complex… too complicated. It really does depend on how you see it, whether you see it as a hindrance or a disability or not. *yawns* I still can’t think of anything. Work has tired me out… yeah, I think we should go with “complicated”. But not bad complicated.
Gwen: Okay… we’re going to get into the nitty gritty now. What kind of age group do you work with, and whereabouts are they on the autism spectrum?
Eugene: Okay… so on Mondays I work with 14 to 18 year olds and they’re high functioning autism. These are the kids that can think for themselves, they don’t understand social situations, but they understand that they don’t understand. They’re aware of their condition. I also do supervised visits with S, on a Wednesday and Thursday. This child’s around the age of 9… he has classical autism or Kanner’s autism so he’s high up on the spectrum. I guess he’s not able to communicate verbally. He’s very erm, self-centred. So if he sees a child eating something he wants he’ll just go and get it. But he does realise there are other people, he does listen to instructions from staff members and his parents. He’s quite… erm… sensory driven. Remember the smearing incident? *blushes awkwardly* Then I also work on a Saturday when we have kids from all over the spectrum to come in… they just have free time, relax and play.
Gwen: I’d say you work with a range of different groups. Which is your favourite to work with and why?
Eugene: Err… Probably the Saturday group. Because on the Saturday group I manage kids from all over the spectrum, so it’s never boring. I can have interactive play with the high functioning kids, while sharpening my skills in how to manage the high support kids… Like T.
Gwen: What kind of challenges do you encounter during work?
Eugene: Gwen… it’s always Gwen! *laughs* I think one main problem, which is quite surprising as it’s not from the kids but from myself, is sometimes I forget I’m working with autistic children, they’re not neurotypical. It doesn’t really cause too many problems when that happens, it’s just that I sort of think of neurotypical reasons why a kid has gone into crisis or hit another kid- so I need to remember they’re autistic and remember my training.
Gwen: And how do you overcome these challenges?
Eugene: I might ask an autistic child ‘can you not do that?’ and they’ll say ‘yes I can do that’… I need to use explicit commands, so, ‘stop doing that.’ Basically just remembering the training. What I do that helps is sitting in on the training sessions with the new volunteers even though I’ve gone through it twice before, just to keep it fresh in my mind.
Gwen: What are the positives of working with autistic children?
Eugene: It definitely increases my tolerance and patience… so when I work with the neurotypical children at my church, it’s a breeze. It’s given me a great first-hand experience of autism. I’ve learnt a lot from them, especially how one condition has affected different children in different ways. But… I think the best thing is that, I’ve obviously realised these kids aren’t that different from “normal kids”. They love to play and run around. They love attention from adults… just like “normal kids”. So I don’t really look at autism as something that separates people now… but I must remember not to put neurotypical motives on autistic kids.
Gwen: Do you plan to continue working with autistic kids in the future, or will you be going into a new field of work?
Eugene: I’ve thought about this before you know… um, I’m not sure about autistic kids per se. You know I want to be a doctor. I’ve never really considered working with children, but since my work at BAS I’m now considering becoming a paediatrician.
Gwen: Based on your experience at BAS, would you define autism as a disability or a different way of being?
Eugene: A Different way of being. *nods solemnly* Definitely a different way of being. But I don’t think it’s fair to basically use “autism” as an umbrella term for all autistic people. We need to remember it’s a spectrum. Yeah, so high functioning I would consider it to be just a different way of being, but for Kanner’s autism or classical autism… I would consider that to be a disability.
Gwen: And finally, what advice would you give to parents and carers who are struggling to meet the needs of their autistic child?
Eugene: I would say definitely research and look into what autism is. Definitely increase your understanding of what autism is and how it affects your child. Because with that knowledge will come a new sense of empathy… so you understand why they’re acting in the way that they’re acting. So for example, this morning T hit me in the face. Ordinarily I would have been quite annoyed and angry at this. But obviously I understood that he wanted something that I wasn’t giving him. He didn’t have a bad intention in hitting me… it’s just… he wanted something, and he felt that was the only way to communicate what he wanted.