Moms L'Inked by Autism: Expressing Maternal Solidarity Through Body Art

...if the impulse to create art is one of the defining signs of humanity, the body may well have been the first canvas.  People have always marked their bodies with signs of individuality, social status, and cultural identity.

     --Enid Schildkrout, Body Art as Visual Language

Whenever I have taught introductory anthropology courses to college students, one of their favorite topics invariably relates to cultural views about body art. They love learning about the myriad ways cultures have marked group belonging and important life transitions on the body. They love debating the changing meanings of contemporary forms of body modification, from piercings to plastic surgery.  One day, a student commented that tattoos have become so common that "My mom even has a tattoo --and she's 40!!" As an over-40 mom (albeit an un-tattooed one), I always chuckled to myself. Recently, I had the opportunity to reconnect with a remarkable over-40 mom for whom body art has become a very special way to express solidarity with a group she considers to be her "tribe" --mothers of children with autism.

When ElizaBeth Webster adopted the oldest of her two sons over 20 years ago in Taiwan, she could not have anticipated the journey she was undertaking. After a lengthy process, he received an autism diagnosis at the age of 11. As the US Centers for Disease Control describes, autism spectrum disorders are "a group of developmental disabilities that can cause significant social, communication and behavioral challenges."An estimated 1 in 88 US children experiences some variant along this spectrum. These disorders affect children worldwide, although accurate statistics are not available for all countries. Autism Speaks, a leading autism science and advocacy organization, has launched a Global Autism Public Health Initiative to increase understanding of global autism prevalence and to improve access to services. Despite all that is unknown about autism, one thing is clear:  the disorders take a huge toll on children and their families. ElizaBeth notes that studies indicate that primary caregivers of kids with autism have stress levels comparable to those of soldiers in combat. 

ElizaBeth's experiences with autism transformed her personal life and her life's mission. She knew that she could not survive the challenges of daily life with an autistic child and, now, young adult without support from her family, friends, and especially other moms who understand the unique stresses of caring for children who have difficulties communicating even with those closest to them. As the Autism Family Support Coordinator for Easter Seals of New Hampshire, ElizaBeth now provides support and training to other caregivers. With trademark passion, honesty, and humor, she draws on a vast store of funny and poignant stories from her own life to connect with other parents.

Elizabeth Webster and Fellow Autism Mom, Viki Gayhardt

"When I started working with families and thinking about that concept of marking your body, one of the things that I thought made a lot of sense was that moms who are raising children with autism often feel the stigma of judgement because they musn't be doing something right," Elizabeth relates. "I was thinking that we also have this grief and this very difficult emotional journey and to kind of have a symbol on ourselves that signifies that we are connected with other people going through the same thing was very appealing." 

After getting a tattoo to symbolize a spiritual bond she shared with several friends, ElizaBeth began to think about how she might mark her connection to her tribe of autism moms. When she shared her idea with some "autism sisters," they loved it.

A deeply creative person, Elizabeth began to design her own tattoo.  The design includes a puzzle piece, a commonly recognized symbol for autism, embedded within an ancient Celtic symbol called the triquetra to symbolize sisterhood and the integration of mind, body and spirit.  Shortly after completing the design, ElizaBeth learned that the TLC show, NY Ink, was casting for their second season. She decided to submit her idea.  In late 2011, she traveled to New York with three other moms.  Their story of getting inked with the autism tattoo was broadcast on national TV. ElizaBeth explained that the tattoo's permanence feels appropriate. "If you are an autism mom, that is never going to change - it's permanent. You are constantly affected by autism, physically, emotionally, intellectually. Day after day, month after month, year after year," she said.  "I also like the idea that it is painful to be marked. It is a perfect analogy for what we endure on this journey."

ElizaBeth and her fellow autism moms envisioned the TV show as the start of a campaign to increase awareness about autism and to deepen connections among parents. Their website, www.autismmotherstattoo.org, is part of this effort. Parents from across the US and beyond have gotten the tattoo or found other ways to express their solidarity, such as the compassionate letter Viki Gayhardt shared with other moms on the site. 

When I asked ElizaBeth what she would like to communicate to those who are not affected by autism, she stressed to "never judge us." Just as important to her is the message she hopes L'Inked by Autism can convey to autism moms and dads. "My hope would be that it lets other parents know that they do not walk this path alone, that we are a tribe of amazing, strong, enduring people that are carved into absolute beauty by this life."