Interview by Jenny Bristol
Illustration by Rebecca Burgess
Lauren Alex Hooper is an autistic musician living in the UK. She was diagnosed as autistic at age 20, just in time for adulthood but too late to be beneficial for her childhood. She was grateful to finally have some words to put to her experience, though, and she and her family fought hard to get there. Now she uses her unique perspective and the experiences she’s had on this journey to be an autistic advocate and active community member.
Always loving music, Lauren came to be a musician in a round-about way, beginning as a writer and seeing where it took her. In the end, she combined two of her loves by being a singer/songwriter, as well as continuing to write about her experiences on her blog. She uses her struggles with mental health and her autistic perspective to help craft her songs, creating work that would speak to her even if she hadn’t been the one to write it. Her first EP, Honest, is out now and available for streaming on Spotify.
What does a typical work/school/regular day look like for you?
Every day is different for me but they usually consist of various combinations of the same things. I’m doing a Masters in Songwriting part time, so I have one day of classes a week and, as we’re coming up to our next round of assessments, the other days usually involve writing songs either alone or with other songwriters (regardless of whether I’d be doing that assessment or not)—remotely at the moment, due to the pandemic—as well as researching for and writing the essay part. And I don’t usually go a day without writing something for my blog (Finding Hope: www.finding-hope.co.uk). Plus we have a pride of cats (a family of five) so there are always cats around to cuddle or play with.
A lot of energy also goes into managing my health, mental and physical: a new thing in my life is the diagnosis of Hypermobile Ehlers Danlos Syndrome, so I’ve been building exercises from Occupational Therapy into my days and will hopefully get to start Hydrotherapy as well when it’s safe. I’m not very good at just chilling out, especially when I’m by myself; I always like to be doing something and I can always find something to do, anything from researching my family history to organising my photo library. My brain likes being busy.
What hobbies or interests do you have in addition to music?
Music really is the big thing for me, not just writing it but listening to it and going to concerts. I really, really love it. But I also love writing for my blog and writing poetry. I love swimming and seeing my friends (these were obviously a lot easier before the pandemic). I’m also really passionate about Autism advocacy and taking part in research studies, both for Autism and for mental health issues.
How does being autistic help or hinder your work or hobbies?
I think this is a bit of a complicated question because there are so many layers to these traits and the different tasks we engage in. In some cases, it’s more straightforward: I’m good with detail and creative in approaching different challenges; I’m strongly motivated by my emotions and need for honesty. But that can make life tricky sometimes. I can become deeply, deeply focussed on what I’m doing, to the point where I don’t even register outside distractions, which can be both helpful and unhelpful, although usually I find it helpful. But I don’t know how to turn off my brain so it’s hard to take a break and recharge, which can create a lot of stress and anxiety. I’m also a huge perfectionist, which means my work tends to be high quality, but it can reach unhealthy levels: for example, I’m so determined to create the best work possible that I’ll neglect myself if there’s any chance that that extra time will help me produce better work. I also really struggle with my energy levels so, on certain days, I can’t manage much before I’m too tired to function.
I also think that the fact that I was diagnosed so late (at twenty) factors in here. The late diagnosis and the long search for answers resulted in multiple mental health struggles, including anxiety and depression, both of which can make day to day life—even the simplest of tasks—just too much to handle.
So it really does help and hinder. I just try to manage what I can on any given day, being more productive on my better days and trying to rest and be kinder to myself on the harder days.
What kinds of changes or accommodations do you make in your life to allow you to be successful?
I don’t know if I’ve got it down well enough to say my accommodations allow me to be successful, but they do allow me to be functional. For the most part. I think the main things I do are try to manage my time and commitments so that I don’t get caught in a cycle of racing around and then crashing. I also try to build in recovery time after events that I know will be big or emotional. I’m far from perfect and I definitely don’t get it right all of the time (although these days, it’s usually out of enthusiasm and wanting to do more than I’m physically capable of, rather than because I don’t recognise my limits) but I’m trying and hopefully I’ll get better at it over time.
Have you experienced discrimination or bullying because of your autism or autistic traits?
I don’t think I’ve ever been actively discriminated against, but I do think that there’s been a level of passive discrimination in the sense that, in the medical and educational professions for example, people have refused to listen and refused to take me seriously. My Mum and I had to fight every step of the way to get my diagnosis, to get support (something that’s had long term consequences on my mental health). And then, when I finally convince people to listen to me, they often still expect me to behave the same way as a neurotypical person, seem surprised when I need support, and then ask me what support I need, rather than making it a conversation. Despite being the person struggling and in need of help, I’m still expected to captain the ship. It can be exhausting, distressing, and really isolating.
What advice would you give to a young or teenage autistic person to help them live their best life, or what advice would you give an autistic adult to help them feel supported in their continuing journey?
With the presentations and experiences of Autism being so varied and wide, it’s difficult to give advice. But from my experience, having an understanding, dependable support system has been the most important part of my experience with Autism. I wouldn’t have gotten to where I am today without my family, my friends from school and university, my therapist, and so on. So I think that the most useful thing I can suggest is to try and find your people, whether that’s family and friends, through work, from Autism networks and groups (online and in person, when that becomes possible), through your special interests…
“Having people who accept you as you are—who push you when you need pushing, who hold you up when you need that instead, who will get excited with you, who will commiserate with you (and who you can do the same with, as gracefully or gracelessly as it may happen)—are so important.”
If you have people who get you, you can get through anything. It might be a big group or you might be able to count them on one hand but, in my experience, feeling understood is one of the most important feelings and it’s worth searching the world over for.
What advice would you give parents of autistic kids about the best ways to support their kids in becoming their best selves? What advice from the so-called “experts” do you think parents should ignore?
Again, with the presentations of Autism being so varied, it’s hard to give general advice because there are always going to be people who feel left out because it doesn’t apply to them. So this is me speaking from my experience, which is obviously based on my presentation of Autism. Listen to autistic kids, in whatever way they communicate; believe them; be willing to advocate for them but help them learn how to advocate themselves (to a degree and at a pace they’re comfortable with, of course). And when it comes to looking for advice—more specific to your individual experience, for example—I think the best experts are members of the autistic community, those with lived experience. There are so many books and blogs and social media accounts written and run by autistic individuals that will likely have more clear and applicable information. Although, it must be emphasised that this information will often be coming from anecdotal evidence rather than scientific study.
What was one piece of advice you received that helped you be comfortable with who you are?
I don’t think there was a specific piece of advice that helped me; I think it was more of a process. I think—and this took time—it was a combination of two things: of building a strong support system of friends and family; and finding and focussing on something I was good at. Those two things really helped me gain confidence in myself. But it was actually when I started learning more about Autism in general and getting involved with Autism research and charity work that I started to feel more confident around my identity as a person with Autism. I can’t say that that would be helpful for everyone, but it has been such a big deal for me.
How did you discover music as an outlet for your creativity?
I’ve been writing in various styles since I learned how to hold a pen; I thought I was going to be a novelist. But I was also singing and when I was sixteen, something clicked and I realised I could do both—together. I started to learn how to play guitar and started playing piano again, having had lessons when I was younger. And it probably only took five or six songs before I knew that it was what I wanted to do. It just felt so right. I never felt so in sync with myself and with the world as when I’m writing a song, a feeling I still get when I write. I knew I had a lot to learn but that was all I wanted to do. So I did.
What do you hope that other autistic people, especially, would gain from your songs?
A big part of why I started writing songs was because I couldn’t find any music that I really resonated with or felt was representative of my life. So it started out as creating music that I would’ve wanted to hear, and that’s something that I’ve always kept in the back of my mind as I’ve worked on my writing: if they weren’t my songs and I heard them, would I feel connected to them? Seen and heard by them?
“And now that I’ve reached the point of releasing music, I hope that other people—people who maybe experience the world in a similar way to me or who have had similar experiences to me—get that from my songs. I hope they feel validated by them; I hope they feel less alone from hearing them.”
How does your mental health affect your lyrics and music?
How good or bad my mental health is (how anxious I am, for example) does affect my ability to write; for example, if my depression is really overwhelming, it’s like the creative switch is just flipped and there’s nothing there. So managing my mental health is really important in order to keep creating, which, in turn, is really important for my mental health; it’s a cycle I have to be aware of and a cycle I have to protect fiercely. But this is my life and so I draw on the experiences I’ve had, many of them involving my struggle with my mental health, and turn them into songs. My debut single, “Invisible,” and my debut EP, Honest, both centre around some of these experiences.
How are people responding to the songs you’ve released so far?
The response has been really positive, which has been amazing. At this point, the Honest EP has just surpassed 60k streams on Spotify, approximately six months after I finished the release cycle. For a first release—and an independent one—I’m really proud of that. People are listening to it! And with each track released, I got some really positive reviews, which was and is really encouraging. I’m currently releasing acoustic sessions of the songs on YouTube, which have been received really positively so far, which has been great because I was so nervous about them. And I’m just starting to work on the next project… I’m pretty sure I know what I want to do but I have so many ideas and that’s such an exciting place to be.
What advice do you have for autistic people who want to pursue creative careers or hobbies?
In the case of a creative hobby, I would encourage you to pursue it without hesitation: there are so many ways to be creative and there is so much to be gained from engaging with your own unique form of creativity. In the case of a creative career, I think it’s more complicated because, of course, you’re building your livelihood on it and depending on your art can change a lot of things, including your relationship with whatever creative pursuit you work with. So it’s an important decision that you have to think about carefully. But ultimately, I think, it has to feel right; you have to feel in your gut that it’s where you’re supposed to be. (And even then it doesn’t mean you won’t have doubts; I’ve made this “leap” into a creative career and I still sometimes wonder if I’ve made the right choice.)
Is there anything else you’d like to share?
I think it’s really important that we continue to have conversations about girls and women with Autism and how the presentation can often be very different to the conventional presentation, leading to many girls and women going undiagnosed or being diagnosed late in life. This can have a really serious impact on these individuals’ lives, on their mental health, their emotional health, and so on. More understanding (actual understanding and not just vague awareness) about Autism in general is vital, but especially in girls and women as it’s still so misunderstood.
What are the best ways for people to connect with you?
- Website: https://laurenalexhooper.com/
- Instagram: https://www.instagram.com/laurenalexhooper/
- Twitter: https://twitter.com/laurenahooper
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