*writer’s note*: This is a personal opinion about my experiences in closely knowing someone with Autism and therefore reflects only my own knowledge, and does not wish to imply that this is the opinion of all those affected by Autism or their family members.
A friend I made whilst on my year abroad recently asked me to complete an interview with her. The subject was disability, as she was required to write a piece for university about someone who either has a disability or closely knows someone with a disability. My brother, Bertie, has Autism. He is pictured below (and throughout).
For anyone unsure, Autism is a mental disability – it is often and briefly described as three impairments of the brain, which can affect various elements of development. To find out more about it, visit the National Autistic Society online.
When my friend asked me for the interview, I was very happy to oblige – I love talking about my brother because, to be frank, he’s the best.
After I’d finished the interview, I realised that I had so much more to say about him. The interview made me recognize that, in all the recent popular culture coverage of young people with autism, such as Netflix’s original US show, Atypical, or the BBC drama, The A Word, both excellent shows that I enjoyed and would recommend, there is not a great deal of representation given to severely-impaired, low-functioning autistic individuals (*note*: these are terms I use to describe my brother, and are used within my circle of friends and family, and therefore are not terms all individuals affected by autism use.)
I was struck by this concept initially and told a friend about it. The conversation went something like this:
Me: I wish there was more representation for people who are severely autistic, perhaps non-verbal, or holding limited speech, like my brother.
Friend: do those shows you mention cast actors who have the disabilities they are portraying?
Me: (after a google search) No, it doesn’t look like it.
Friend: how would you actually feel then if you, like, saw someone who perhaps wasn’t autistic, playing someone with severe autism, that’s like Bertie’s?
I was yet again, struck. This is an important question: how would I react? And how would everyone else?
A little bit about my younger brother:
Bertie is nineteen. He is first and foremost beautiful – in person and in character – and also sweet, kind and funny. When I recently informed an American security guard that Bertie is “mentally impaired” (which I have found to be the most understood terminology in the US), Bertie suddenly spoke up with “yeah, I’m a pear!”, knowing that he was being spoken about, wanting to contribute his share in the conversation. He wasn’t quite sure why he had made me laugh, but that is just another reason why he is the greatest, more sincere comedian of our time. And be assured that we were laughing with him, never at him – he loves to be the centre of attention, and to make people smile. And he does constantly.
This wasn’t always the case. I remember a difficult time – when Bertie was violent. He was younger then and unable to speak beyond a few words, resulting in rage and forceful actions that most likely came from his feelings of frustration – a want to be heard.
In truth, I can’t speak for how my brother actually feels – nor, in many situations, can he, even now that he has more speech, tell me exactly what is happening inside his head.
Would it be wrong to try to portray this element of my brother’s personality on screen then – if we can’t actually know what is happening for him? To be fair, it’s not really a question that can be answered one way or the other, not in my opinion anyway.
When prompted, Bertie can tell me if he’s happy – but sometimes he says he is, when he isn’t. That’s something we all do, of course; it’s a very human desire, to want to keep people from worrying about you. But this becomes a lot harder if the person who is trying to please you has a disability preventing them from understanding what might be wrong with them. Sometimes my brother says “my arm hurts”, and his arm doesn’t hurt – but perhaps something else is wrong. It’s good that he recognises that we will react when he says something hurts but we don’t always get it right – there’s a lot of guesswork, even now, after getting to know Bertie and his Autism for the past fifteen years (he was diagnosed at four). It can be very trying at times for myself, and for my family. And this then becomes another complexity to my brother’s needs, that might be difficult to transfer to the screen.
So, in thinking predominantly of mine and my brother’s circumstances, how would/could this be portrayed on television? Would it be very hard to watch – for me, for my family, for others who relate? The BBC show The A Word was very poignant and close-to-home for me, and the young boy, Joe, had a degree of Autism not actually very similar to my brother’s, as indeed Autism affects everybody differently, the importance of which I hope resonates with all readers.
This has been more of an exploration on the complexities of my brother’s Autism and perhaps may have only slightly furthered the train of thought I’ve had for a long time: how far can popular culture go in portraying the reality of Autism in all its complexities and the ways it affects everyone differently?
Whilst this is something that is not necessarily answerable within the space of an article, at least I’ve had a chance to show off lots of photos of how much fun Bertie and I have.
I think the important thing for me is that shows such as The A Word do at least raise awareness about Autism, even if not for the “type” of Autism by brother has. I can’t really hope to answer all questions (or even my own questions) surrounding the ethics of portraying a lower-functioning autistic individual on screen, especially by an actor who might not have the same disability, not in one article. But what I can do is reiterate how wonderful my brother is.
My three favourite things about Bertie:
- His empathy – never let anyone say that people with Autism don’t have empathy, because Bertie cares more about me and my happiness then sometimes I think I do myself.
- He loves Disney movies – and singing along to them. If you ever need a companion for viewing Aladdin or Mulan, or any other Disney film for that matter, Bertie’s your man!
- Finally, his willingness to give everyone a chance. He has no preconceived or societal expectations or prejudices of anyone. As long as you are kind to him, he’ll be kind to you. And that is the purest of all kinds of love – because Bertie is the purest kind of person.
So whether or not there is the possibility of a character representing him in all his Bertie-ness, I can at least show the world how fantastic it is to have Bertie in my life, through talking about him, writing articles such as this one, and through continuing to spend time with him – and most importantly: love him for everything he is and everything he does.