By Steven Kapp
“Why fit in when you were born to stand out?” asked Dr. Seuss. Indeed, autistic children’s performance is sometimes enhanced by their tendency to not conform to social pressure, which resonates with me as an autism researcher and autistic neurodiversity advocate. Nevertheless, my experience of running a half marathon on October 12 reminds me of the need to strike a balance in celebrating individual differences and achievement while respecting support from others.
As an “individual” sport, running has allowed me to succeed despite my experiences growing up. I fared poorly in P.E., my worst subject in school, when graded on ability. Peers often picked me last to teams, and I never joined a team outside of school, as coordinating my body with other kids’ proved even more difficult than other forms of interaction. I cannot literally relate to the expression “It’s like learning to ride a bike” because that I never managed to do that (without training wheels, of course). While my exceptionally low scores on motor tests and several gashing, crashing slips while running within the past year attest to my continued clumsiness, around that time I also moved from holding up the rear to pulling the lead of a 100-strong meetup hiking group and from the bottom to top 15 percent of the same 10K race. It came as quite a shock when the Long Beach Half Marathon declared me an “athlete” for competing in its event.
Amid my doubts, occasional pain, and other priorities, I could not have done it without an abundance of help over my life. I developed and first discovered my speed and endurance growing up through games running around with my friends at school. Treadmill runs at the gym began only after I learned from a college fitness class. My aunt, a doctor, and uncle, a triathlete, gave further tips to encourage healthy gym habits, and he signed us up for a 5K that gave me my most concrete sense of physical accomplishment. Then in graduate school, I slumped to physical and mental lows, stressed and sedentary. Trying to run from my problems, I gave myself my a sprained leg rather than lift off the ground, and months after recovery still could only walk most of a 10K. Through hiking, a Sierra Club leader and medically inclined friend helped me build back and to newfound heights (literally and figuratively) with a small group of friends with a series of treks that prepared us to summit Mt. Baldy at over 10,000 feet in snowy and icy conditions (themselves new to this Angeleno!). Train 4 Autism then give me practice, tips, and companionship that helped me run throughout a 10K and half marathon, finishing both in a sprint. Although passing so many runners last week from accidentally starting in the slowest “wave” provided a visceral, if not distorted, sense of the progress I have made, the thousands of public personnel and volunteers who made the event possible, and even Mother Nature’s assist with cloudy beach weather, added much-needed perspective.
To learn how to receive this support, I had to endure a different kind of growing pain to gain flexibility and gratitude for teamwork. In third grade I parted from my best friend of two years because I stuck to my promise and warning to him to not continue to break the rules by running away from me during tag after I had touched him when “It”. I regret that silly decision to end the fun times we enjoyed at school and our homes with that future valedictorian, a man of good character. In middle school I went along with the games my peer group made up, helping me to preserve friends at a school during a difficult time socially. Now as an adult I often have to make decisions about whether to work with or join those I may disagree with at times, toward the advancement of a greater good – a crossroad encountered for the half marathon as well.
Train 4 Autism provides people a platform to fundraise for the autism charity of their choice, and for the events last Sunday I – apparently their only “athlete” on the autism spectrum – launched a campaign for a separate organization. I chose to benefit the Autistic Self Advocacy Network, an organization run by and for autistic people, and which inspired me to the enter the autism and disability field by introducing me to self-advocacy movements. Support from family and friends enabled me to reach T4A’s highest fundraising incentive mark ($500), which meant I could also donate an iPad to a special education classroom of my choice. I decided to fulfill a request listed on Donors Choose within a moderate-to-severe disability high school in a low-resourced neighborhood, which I volunteered at and observed in college. All this required putting aside qualms about representing T4A – mainly, their well-intentioned use of the popular puzzle piece symbol to represent autism, which many autistic self-advocates oppose. Not only did my participation promote the motto of the disability rights and other movements, Nothing About Us Without Us! (meaning marginalized groups should be involved in matters that concern them), but it also provided practical personal benefits like socialization (via group runs) and stress management. Similarly, autistic and non-autistic children alike may enjoy running groups at school; many kids like running as a recess activity.
A school club, other organized activity, or free play with running at recess would allow kids different opportunities to engage. This could include running-based games or running in tandem. Alternatively, runners could focus the feedback generated by their body – the repetitive motion and rhythm – or striving for their personal best. While sometimes staff describe autistic children as a “runner” in a stigmatizing way, this would provide a context that inclusively celebrates children as runners.
Thus, whether a child is happily alone or thriving in a group game, adults should honor their individuality rather than forcing them to fit in. This includes empowering or at least allowing them to have “loud hands”. The Autistic community uses this metaphor to refer to their pride, culture, and resilience, in that clinical practices such as “quiet hands” encourage the suppression of stigmatized behaviors like hand-flapping that may serve adaptive functions such as self-regulation or communication. In such cases peers and staff need to accept individual differences. After all, prospects for employment are tied to strengths, and candidates are hired for how they stand out from other applicants; income means some self-sufficiency. Yet we must interact with others to succeed; in our interconnected society, no one is truly independent. Valuing the relationships and support received to achieve personal goals can help children and all of us navigate this balance.
For more on this individual-collective balance, autism, and marathons, the South Korean movie Marathon, based on the true story of Bae Hyeong-jin, an autistic man who finished a marathon in under 3 hours and set Korea’s record for youngest triathlon finisher. In the film perhaps the greatest growth happens for Cho-won’s mother Kyeong-sook, who became hospitalized by her worries and doubts toward autistic son, in literally letting go to allow him to run his first marathon.