Creative Difference: Exploring Art And Autism

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:

  • “They soothe and calm me.”
  • “My interests do not dominate my thoughts the way that is consistent with an obsession. It’s not like I can’t think about–or talk about–anything else. It’s not like I can’t set my other interests aside and focus on my daily work. It’s not like I can’t get anything else done. If my interests were indeed obsessions, none of that would be true; my life outside of the interest would have come to a full stop.”
  • “For me, it’s all about relaxation and curiosity. I want to learn, focus, explore. And I want to do so in depth, with a sense of completeness. I don’t want pieces of the picture, I want the whole picture. I want to connect dots. I want to reach understanding. I want to feel solid in my knowledge. Tidbits and soundbites just don’t do it for me. They’re pointless and unsatisfying. It’s like, what’s the point of spending time gathering a bunch of soundbites and headlines? Meh. Give me the whole story, or don’t bother me with it.”
  • “I would like to see the ‘obsession’ association fall out of favor. It’s not accurate. It’s not nice. It lacks understanding.”

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.

The DSA Process For My Masters Degree

Since the academic year is starting up again, I thought I’d write about my experience with getting support for my Masters Degree as a disabled student. The DSA (Disabled Student Allowance) process can be very difficult so, having been through it twice now, I thought I’d share my experience. I don’t know if I’ve had a good, bad, or typical experience but I thought that simply putting the experience out there might be helpful to anyone at the beginning of this process, to give them an idea of what may happen down the line. As I’ve already said, it’s difficult and tiring but that’s not to say that I would discourage someone from applying. I was just very naive going into it the first time and was blindsided by how complicated and stressful it was; I’m lucky to have had help going through this both times. Having support from sources such as DSA can be hugely beneficial but I wouldn’t want anyone going into the application process unaware so I thought I’d share my experience as I haven’t seen many accounts of the whole process…

I wrote about my first assessment in great detail here, so I suggest reading that but I’ll also sum it up here to make sure I’m sharing the full experience in one place. So… That first assessment was a complete disaster. The assessor was perfectly nice but when we got to discussing what support DSA was willing to offer me, it went downhill fast. They would offer me a laptop, but not one with an operating system required to run the programs I needed for my course because apparently that was a course specific need rather than a disability specific need despite the fact that I – a disabled student – needed them to do my course. They wouldn’t offer me any travel support towards commuting because I’d ‘chosen’ to live at home when I actually had to live at home because of my disabilities. And they have no direct contact with the universities themselves so they couldn’t offer any support through them. So, essentially, they weren’t going to offer me anything because my needs didn’t fit their guidelines, because my disability didn’t fit with their idea of disability. It was hugely frustrating and distressing and I left in tears. I felt completely let down and abandoned.

By the end of the assessment, I was so utterly distressed that the assessor told us that we could appeal, which we did. The second assessment was with a different person, a really lovely woman called Rebecca, and was much longer and in much more depth. We went through everything again in minute detail: from the necessary computer specifications to the exact details of an average university day’s travel. She went through all the possibilities and all the potential outcomes, as well as the potential roadblocks and the reasonings behind them. It was a lot of information but I did leave feeling more hopeful; I really felt like she was on the case, like she was really committed to helping me get as much support as possible. Her report went through several different people before reaching a senior SFE (Student Finance England). It was initially rejected but then, when we provided them with documentation proving I receive PIP (Personal Independence Payment), they changed their minds and granted me a new laptop, software and apps to help with my lectures, independent study, and mental health, and mentoring through the National Autistic Society (although it seems that, due to the pandemic, this service no longer exists). I didn’t get any support for the travel but I’m grateful for what I did get, plus the travel costs haven’t exactly been an issue over the last few months… From that second assessment, it was four months before I received the support I was awarded.

In my experience, the whole DSA process is very slow. It was slow when I went through it during my Bachelor’s Degree and it’s been even slower this time, presumably due to the pandemic. I started this process in January – much later than intended but my mental health was so bad that I couldn’t handle the in person assessment – and didn’t get the equipment until June. Then the laptop that arrived wasn’t the right one and so we had to spend another two weeks – and a somewhat ridiculous amount of emails proving that it was in fact the wrong one – organising the swap, insuring that I got the one that my DSA assessment had determined I needed. A couple of weeks later, the new laptop arrived but setting it up took much longer than it should have. This was due to how the people who’d previously worked on my laptop had set it up, making the transfer of all my files much more complicated and messy. It’s still not as sorted as I would like it to be but it is functional.

Factoring in all of this, had I been doing my Masters in one year rather than two, I would’ve had this equipment for less than a semester before I finished the course. Yes, this was affected by the pandemic, problems with the university Autism support person, and the late start in pursuing DSA but that was due to the reasons I was in need of support so it’s not the most efficient system in that regard: what happens if you’re too disabled by your disability to seek help?

The laptop and software that DSA have provided me with has been invaluable, especially since my laptop was dying a slow death around the time I received the new one. We didn’t get everything we were hoping for but it’s definitely better to have it than to not. So, having now been through this twice, I thought I’d offer some tips that would’ve been helpful to me before going through the process…

  • If you disagree with part or all of the final assessment, ask to talk to someone else – It’s not something you’re necessarily made aware of when you have the assessment but I was so distressed by the end of the assessment that the assessor told us we could appeal. My second assessment yielded quite different results than the first one so it’s definitely worth asking if you feel that you haven’t been heard or fully supported.
  • Ask what kind of documents act as proof of a need for support – The earlier you find out what paperwork might help your case, the quicker the process will go. We, unfortunately, didn’t know that the PIP documentation was helpful and the whole thing may not have taken so long if we had.
  • Take someone with you as it can be overwhelming and tiring – These assessments can go on for hours and there’s a lot of information to both give and receive. Plus, it can be a pretty emotional experience so having someone with you can make the whole thing easier; you have someone to lean on and two pairs of ears to take everything in.
  • Ask for everything that you would find helpful – You might not get it all but you definitely won’t get it if you don’t ask and hopefully you’ll get some of it. It’s also always worth asking what you’re potentially entitled to because there may be things you aren’t aware of that could be helpful.
  • If you’re told something isn’t possible, ask why – The assessors can’t know every relevant question to ask and you can’t know every relevant piece of information to give so if they tell you something isn’t possible or available, it’s worth asking why because you may have some information or some paperwork that changes the situation and what support you can get.

I hope this post is helpful for anyone considering or going through the process. I hope I haven’t made it sound too scary. I really do recommend it but I wouldn’t want anyone to be unaware of how difficult and stressful it can be. You deserve to get the support you need and I only want to make that easier, if only by arming you with information and advice. So, if you’re going through it, I wish you the best of luck and I’m rooting for you.