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For Neurodiversity Celebration Week, our founder, Sarah Javaid, has written this blog about her personal experience with autism and cycling.
Discovering I’m autistic
I found out I’m autistic at the age of 40. I have struggled with certain things all my life and wondered why they seem to come so naturally to everyone else and why I feel so different!
Being diagnosed a year ago was a big mix of emotions. Grief, because of the mental health struggles over the years and how hard I’ve been on myself. But definitely liberating at the same time because now I finally understand myself, and with that starts to come compassion.
I often hear, “oh, but you don’t look autistic” or “well we’re all on the spectrum somewhere aren’t we?” Going back a few years, I probably would have responded similarly. Like most people, my understanding about autism was based on stereotypes such as autistic people have no empathy and are all maths geniuses. Unfortunately there’s still so much stigma attached to autism and it’s mostly been viewed through a “problem” lens.
What is neurodiversity?
The neurodiversity movement has been reframing how we understand autism and other forms of neurodivergence like ADHD, Tourette’s, dyspraxia and dyslexia. There's a move away from a “deficits” model and particular attention on how traits can present in women.
Women and girls have been largely under-diagnosed and misdiagnosed. Many of us have become adept at “masking.” Masking means hiding or compensating for your neurodivergent traits to fit in with what is more typical. Long-term masking takes its toll on mental health and probably has contributed towards the fatigue and exhaustion I experience daily.
Neurodiversity just means that there are differences in the way that people think, communicate and experience the world. Most people are “neurotypical” and others are “neurodivergent” - neither is better or worse, just different. Estimates vary massively but I recently read one figure that as many as 1 in 44 people may be autistic and it may be even more than this.
While some people may experience some autistic traits some of the time, it is not accurate to say that “everyone is on the spectrum.” Being autistic is defined by your traits being life-long, of a greater intensity and having a significant impact on your life.
Not everyone who is neurodivergent identifies as disabled. However, as the social model of disability explains, neurodivergent people can be disabled by society. In my experience, this could be physical environments which cause sensory overwhelm (e.g. crowds, loud noises or physical contact), or societal expectations like eye contact.
Neurodiversity is just one part of the beautiful diversity of God’s creation. The Qur’an says: “People, We created you all from a single man and a single female, and made you into races and tribes, so that you may get to know one another” (49v13).
What’s all this got to do with cycling?
I decided to write this blog for ‘Neurodiversity Week’ to raise awareness and start a conversation at Cycle Sisters about what more we can do to be true to the Qur’anic call to “get to know one another” and celebrate diversity and difference.
Cycling has given me a space where my needs are met and I can feel comfortable as an autistic woman. I’ve come across quite a few neurodivergent people in the world of cycling - it seems to attract us!
Here are 5 reasons cycling works for me…
I can actually do it I’ve never been a “sporty” person. I hated PE at school and did virtually no exercise in my 20s and early 30s. Stamina, fitness and coordination are certainly not my strengths as I realised again recently when I started running! It’s not helped by having a range of comorbid conditions including hypermobility, asthma, chronic insomnia and various autoimmune issues. Discovering cycling was such a revelation because I could actually do it. It doesn’t require much fitness and it’s low impact on your joints. I’ve been ok with the coordination needed to ride a 2 wheel bike, although I’m definitely not coordinated enough to be clipped into the pedals on my road bike! For people who struggle more with balance and coordination, there are trikes and other non-standard cycle options. I love the fact that even if I’m in burnout or exhausted from a lack of sleep, I can usually still cycle - the casual rolling around, daydreaming kind of cycling which is my favourite. I’ve gone from zero to cycling pretty much 7 days a week - it’s my transport, exercise and therapy all rolled into one.
Special interests One of the things I love about being autistic is the intense joy you can experience from a “special interest” (a more positive way of viewing what are typically called autistic “restrictive and repetitive interests”). Cycling is ripe with opportunities for special interests - bikes and ever more bikes (6 and counting!), all the gear and accessories, Strava stats, new routes, improving performance… Last year I had an intense hyperfocus on mountain biking for a few months - it was all I could think about! I even started getting quotes to redesign my garage to add a new mountain bike to my collection, but then as quickly as it had started, I was completely over it. However, my longer-lasting special interest over recent years has been supporting Muslim women to cycle and I set up Cycle Sisters in 2016. A strong sense of justice and the obsessive way my brain works (both of which can be common in autistic people) has helped me to pursue this goal with a passion and relentlessness. These are definitely traits that I am grateful to God for as it has given my life meaning and purpose. It’s also why I can mostly confidently and articulately talk about Cycle Sisters and advocate for women’s rights in cycling, but often struggle to string together a few sentences of small talk - such is the paradox of being autistic!
Socialising I have probably struggled the most with social and communication challenges. For me, socialising requires a lot of energy and thought process, rather than being intuitive. Cycling has made socialising easier. When you’re cycling, you don’t have to make eye contact, it’s brilliant! Eye contact causes me sensory overwhelm and a lot of anxiety. You also always have a shared interest in cycling as a perfect topic of conversation when cycling as a group. I’ve discovered I’m much more comfortable socially when I have a role. As a Ride Leader, an instructor or a trainer, the social dynamics are clear and much of it is scripted. I enjoy sharing information and helping people and in doing so, feel part of a community. Contrary to the stereotypes, many autistic people are hyper-empathetic and tuned in to how people are feeling. This is such an asset when it comes to supporting people with something like learning to cycle as an adult, where people have many complex barriers and emotions.
Sensory experience The repetitive motion of cycling is soothing and grounding. I had never thought of pedalling as a form of “stimming” (short for self-stimulatory behaviours e.g. for sensory reasons or to deal with stress and anxiety) until someone mentioned it recently, but it makes sense. I can’t say I’m always anxiety-free when I cycle, because my brain never stops but I’m definitely calmer and more regulated. Cycling helps me to avoid certain environments I find challenging, particularly public transport and the noise and busyness of crowds. I need time on my own in the silence to regulate and recover from social interactions. There is nothing better than being out on my bike by myself in the absolute middle of nowhere. I love being alone! Cycling also satisfies my need for new experiences and thrills. I get bored easily but different routes to explore, hills to conquer, different types of cycling to try and various bikes to ride means there’s always something new to pursue. Being surrounded by nature and noticing the details of God’s creation never fails to lift the spirit and bring about a sense of awe and purpose.
Autonomy, control and empowerment I need to be in control and do things my own way, a common autistic trait. When you cycle you have complete control over your journeys - what time you leave, what route you’re going, exactly how long the journey is going to take etc. You’re not dependent on anyone or anything else which is a very liberating feeling. When I’m cycling, I feel confident in a way that I definitely don’t in my day to day life. Claiming my space on the road and taking the lane feels so empowering. Doing things I didn’t realise I was capable of like fixing a puncture or transporting 5 kids on a cargo bike gives me a real sense of achievement. Having always felt like there’s something wrong with me, these boosts of confidence from cycling have been really important for my mental health.
We want to hear from you
These are just some of my experiences - everyone’s experiences are different. There is such a broad spectrum of what it means to be autistic. As the saying goes, “if you’ve met one autistic person, you’ve met one autistic person.”
If you identify as neurodivergent (with or without a diagnosis), we would love to hear about your experiences and suggestions for how cycle groups can be more inclusive and celebrating of neurodiversity.
Further reading
Pre and post-diagnosis I’ve read a lot about autism and neurodiversity. It’s certainly become a special interest. Here’s some of the resources that I’ve found useful in my journey so far:
Books:
Unmasking Autism by Devon Price
Unmasked by Ellie Middleton
Autism in Adults by Luke Beardon
Divergent Mind by Jenara Nerenberg
Is This Autism? A Guide for Clinicians and Everyone Else by Donna Henderson, Sarah Wayland and Jamell White
Online resources:
Terms and understanding about neurodiversity are constantly evolving. If there's anything inaccurate in what I've written, please do share your feedback in the survey above.