Posted on October 24, 2020
Recently I attended a webinar hosted by the Autism research charity, Autistica, about the relationship between Autism and art and it was really interesting. The panelists were Professor Jonathan Green (Autistica Trustee, Professor of Child/Adolescent Psychiatry at Manchester University, and artist), Sarah Jane Bellwood (artist and gallery owner), Lizzie Huxley-Jones (editor and author of Stim: An Autistic Anthology), and Jane Elizabeth Bennett (multi-disciplinary artist and researcher).
Each person introduced themselves and then the discussion began. I found the whole thing really fascinating so I thought I’d pull a few quotes from the video that I thought were particular highlights, but I thoroughly recommend watching the whole video to hear all of the points made.
So here are some quotes that I found really interesting…
JANE ELIZABETH BENNETT: “I think art is the first language that I really kind of learnt. So, for me, art is a way to speak, it’s a way to communicate, it’s a way to convey emotion, and they’re not always things that I’m fantastic at doing in a kind of neurotypical way. For me, art is a very atypical way of communicating. You do it through colour, you do it through gesture, you do it through sound.“
I love this description of art and it’s something I really relate to as an artist. I definitely use my songwriting to tell stories and relay experiences and share emotions. I do that through the lyrics, through the melody, the vocal performance, the arrangement and instrumentation, as well as the production. While, for me, the song is the piece of art in its purest form, the performance, the arrangement, and the production are all a vital part of conveying and enhancing the emotional experience. I definitely experience Synaesthesia to some degree: sounds have colours (and some even have specific tastes) as do emotions and so a big part of my process is trying to bring those experiences together; I’m often only happy with a song when the emotions, sounds, and colours are completely in sync.
JONATHAN GREEN: “And I was totally absorbed in doing this drawing, like nothing else existed except what I was doing. And I came out of it an hour or two later or something and I think I felt, ‘That’s the most real thing that’s happened to me for a long time… is that connection, with that plant through drawing.’ And I think that’s, for me, why I held on to it… was that it felt… it gave me an access to something that was so real… It’s allowed me to feel really real.“
Having just written and finished a song is when I feel most real, most alive. Sometimes I feel like I don’t really exist and when I finish a song I’m proud of, it’s like a realisation that I really do exist. It’s the only time I feel in sync with the universe. I never feel so connected to myself as when I finish a song, or to other people as when I perform a song I’ve written and they respond to it. We’re all in this single moment, experiencing this thing together and it’s magical.
LIZZIE HUXLEY-JONES: “We should have the space within an industry to create whatever we want.“
JANE ELIZABETH BENNETT: “I think it’s very important that as an autistic artist… it’s very important to have that space to make work that isn’t about Autism. Just because I’m autistic doesn’t mean I have to be, like, the voice of Autism but I think my Autism – just as a personality or as a writing style – is gonna be inherent in the work I make.“
LIZZIE HUXLEY-JONES: “The way I describe it is, ‘we experience everything autistically so why wouldn’t everything we create be a little bit autistic as well?‘”
I think these are really important points: just because we’re autistic, it doesn’t mean that we have to create art about being autistic. Many do because it’s an outlet for their individual experiences or because it’s a way to make sense of themselves but we should never be pigeon holed into just creating Autism related work. How much space Autism takes up in our lives is different for everyone and we obviously feel and experience unrelated things that we want to make art about so not all autistic artists will choose to make art about Autism. But as Jane points out, being autistic likely will influence the work we make because it influences the way we perceive the world. Day to day that can be incredibly frustrating but when it comes to art, it can be something that makes our work special and different.
JONATHAN GREEN: “I think, for me, making art or the process of making art does help me make sense of things or sort my mind out in some way. I always feel, kind of, more in harmony after I’ve been making art. Internally, you know? Kind of rebalanced, or something like that.“
I can absolutely relate to this. I definitely feel most calm, in mind and body, when I’ve just finished a song. It’s not too far from the experience I described earlier, about feeling real and alive and in sync. I also feel this real sense of inner calm. It’s like everything within me has been shaking and it’s suddenly stopped. It’s like all these disconnected pieces have come together and everything makes sense. It’s not dissimilar to how I imagine getting high feels.
There were a couple of things that bothered me though. I felt like having three visual artists and one writer wasn’t the best representation of artistry; they could’ve had a musician or sound artist, an animator, a photographer, etc and that would’ve created a more varied discussion because the forms of art were more varied. The discussion was really interesting as it was but I think a wider variation of art forms would’ve only added to that.
There was one thing specifically that I really didn’t like and that was the repeated use of the word ‘obsession’ in place of ‘special interest,’ the term more commonly used in Autism. I know that some people don’t like the phrase ‘special interest’ (I must admit I don’t love it) but I don’t think that that’s a good reason to revert to the word ‘obsession,’ a word that has some very negative connotations. Various definitions of ‘obsession’ involve the terms ‘unhealthy’ and even ‘disturbing’ and while I can’t speak for anyone else, I find those associations with my special interests uncomfortable and actually upsetting. I’ve had a handful of special interests in my life and none of them have been unusual in subject (animals, writing, singing, songwriting, to name some), but the intensity of that interest and fascination is what stood out. Definitions of ‘obsession’ also include the idea that they dominate a person’s thoughts, that they have control over you (which links back to the idea that they’re unhealthy), which, again, I personally wouldn’t associate with my special interests. While I think about my special interest – songwriting – a lot and would prefer to spend all of my time doing it, I can think and do other things and I can recognise when I’m spending too much time doing it and neglecting the other areas of my life. And during my research into the difference between ‘obsession’ and ‘special interests,’ I found several articles about how helpful and positive engaging with special interests are for autistic people (here and here). In the former, the writer, Laina Eartharcher, makes many good points that I feel I should quote rather than attempt to paraphrase:
I relate to all of these statements and fully agree with her. ‘Special interest’ may not be the perfect word but the use of ‘obsession’ can be damaging and create misunderstandings about Autism. So it did really bother me how many times this word came up and the fact that it was never addressed, even briefly. I want to talk about special interests more in the future – I think it definitely deserves its own blog post as a subject – but as it came up here, I felt like it was important to talk about.
But that issue aside, I found the webinar to be a really informative, enjoyable experience and I look forward to similar events that Autistica puts on. I’ve followed several of the speakers on social media and have enjoyed delving deeper into the work they’ve created. As an autistic person, I’m always intrigued by the work of other autistic people and to what degree they experience and interpret the world in the same way I do and then (if they do) how they translate that into art.
Category: autism, book, diagnosis, emotions, music, response, tips, uncategorized, video, writing Tagged: actuallyautistic, art, art and autism, artist, artists, asd, author, autism, autism spectrum disorder, autistic, autistic adult, autistic artist, autistica, communication, creative difference, creativity, emotion, exploring art and autism, jane elizabeth bennett, jonathan green, laina eartharcher, language, language of autism, lizzie huxley-jones, music, obsession, obsessions, perspective, quote, quotes, representation, sarah jane bellwood, songwriting, special interest, special interests, synaesthesia, webinar, writer
Posted on January 12, 2019
I first found myself unable to speak when I went to see the doctor for my anxiety and depression, although I didn’t know that that was what it was at the time. I’d been referred to the ‘Wellbeing Service’ by my GP (who I’d been seeing since childhood). I have always struggled with anxiety and so my Mum – my hero – came with me to provide support and any extra relevant information I might forget in the moment.
But the anxiety built and built. I walked into the room and sat down and in that moment, I stopped being able to function. I felt like I had this massive weight on my shoulders, so heavy that I physically couldn’t lift my head. I stared into my lap, unable to move. I couldn’t even move my eyes. And even if I could have, sustained eye contact felt impossible. That’s something I still struggle with (there’s a blog post about that here). The meeting of eyes feels so incredibly personal, like they’ll see all of me or I’ll see all of them.
And I couldn’t speak. I knew what I wanted to say – I could just about hear my own voice in my head above all the anxiety – but I couldn’t physically say them. My throat felt painfully tight and my tongue refused to cooperate. I was trying to speak, trying to function, but I just couldn’t.
I was told that, if I wouldn’t talk, they couldn’t help me. That still upsets me all these years later because, to me, it seems so obvious that I was struggling with real, difficult anxiety. We walked out and suddenly the words exploded out of me and I was standing in the street outside, screaming and swearing and sobbing. I felt so abandoned.
From there, I went to a series of doctors and therapists but was unable to speak. My Mum spoke for me: we would discuss it all in detail before the appointments so she knew what I would say if I could. It was difficult and traumatic and I felt like I was getting sucked further inside myself with every experience of being unable to talk.
Eventually I ended up seeing an EMDR therapist called Mark. We sat on chairs in the middle of a big empty room that had a glorious view of London at night. Sometimes we sat on the floor and played dominoes. I couldn’t speak and I couldn’t look at him but after a while, we started using a white board and pen. Writing has always come to me more naturally than speaking. So he asked questions and I replied, filling the board with scribbles.
But in the end it wasn’t to be. Maybe it wasn’t the right thing, maybe it wasn’t the right time. We’ll never know. I ended up taking a break from all types of therapy. I just needed some space. And then, in the summer of 2014, I went to see a psychiatrist and I knew things had to be different. I couldn’t do it again. I needed to talk.
I don’t want to give the impression that selective mutism is a choice. It’s not. I didn’t simply decide to start speaking again in these highly stressful situations; it’s so much bigger than that. There was a shift inside me, an unconscious realisation that talking was the only way to create change. One of my parents describes it as “a leap for survival” and she’s not wrong. It was about survival, although I wasn’t conscious of that at the time. At the time, it was just another step in a long line of steps.
What I’ve learned throughout all of this is that everything changes. It’s like shaking a box full of puzzle pieces, trying to get all the pieces to land in their respective places. With every shake, it lands in a different arrangement and life looks different. Different things are possible. Sometimes it’s even enough to see what the picture is.
Somehow I was able to talk. I couldn’t tell you how. My psychiatrist has told me since that he didn’t initially believe that I struggled with social anxiety, and anxiety in general, because that first impression of me was so confident and articulate. He understands now that it was a matter of survival, desperation making once impossible things possible.
It’s been several years since I found myself unable to speak. Even though I continue to struggle with anxiety, it’s never again manifested in that form. But even now, I hate the phrase ‘selective mutism.’ It implies that there’s some element of choice, like I was (and others still are) choosing not to speak. If I could rename it, I would call it Situation Specific Mutism. I think that fits better.
I wish I could offer some wise words or some quietly brilliant advice to those still unable to speak. But I think the most important thing is finding someone who gets it and not giving up until you find that person. If it doesn’t feel right, it isn’t right. The right person – the person that will get you and make it work for you – is out there.
Somebody once told me the story of a boy who was only able to participate in therapy when the lights were off but up until that point, all the medical professionals in his life had refused to do that because it wasn’t how things were done. Sometimes it’s ridiculously simple but for whatever reason, people don’t want to make those adjustments. But there are people out there who will, whether that’s having someone with you, whether you need to write rather than speak, or use another medium to communicate. In my experience at least, sometimes you have to treat the anxiety in order to make communicating easier.
The last thing I want to leave you with is an app that might be useful. It’s called Emergency Chat and it’s designed for communication when speaking is difficult. You hand it over to someone and it shows a message that you can personalise to what you’re going through so that the other person can understand it better and then you can type back and forth, or not. The message itself may be enough.
I hope this has been helpful. And if you’re going through something similar, know that I’m thinking of you and sending good thoughts.
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
I’m currently releasing my first EP, Honest, track by track and the first three songs are available on all major platforms.