Tess White is a preschool teacher who is currently earning her initial teacher’s certification and master’s degree in Early Intervention/Early Childhood Special Education at Portland State University. She lives on Orcas Island in the San Juan Islands of Washington State with her family, including her daughter Erin, who is on the autism spectrum. Tess is passionate about children and enjoys working with them and their families every day.
Autism on Orcas Island
I am not on an island by accident. Living here on Orcas has helped to catch my daughter, my daughter with autism, from falling into the ocean. An ocean full of lost faces of other girls with autism riding on the endless waves, stuck on the crests, looking out to the land which they cannot get to. They seem to crash endlessly at the mercy of the sea. My daughter has ridden on these same waves, stuck in an ever-repeating loop. But I often dive in after her. The ocean is cold and unforgiving, but familiar. As I haul her back to land, she finds my eyes, and it is on the shore, ever so close to the pervasive beating of the waves, that we can rest—at least for a moment.
I walk into Island Market with two of my children—Erin, nine years old, and Willow, seven years old—to pick out a movie. The girls pick The Princess and The Frog. It has a colorful, enticing cover, and they are excited. I hand the checker the movie case, and she hands me back the actual movie in the plain store case. Erin is screaming. “That’s not the movie! I don’t want it!” I explain to Erin while I am hurriedly writing my check. “I know it is hard for you to understand, Erin, but this is the movie, it’s just a different case.” I say this for the checker as much as for Erin. It has no effect. Erin is screaming on the floor and kicking her legs. “I don’t want it! I want Princess Frog!” I hand my large bag of groceries to my seven-year old. “Willow, can you carry this?” She does; she has been through this before. I peel Erin off the floor. This is not easy. Her body is long, and she is strong. We have a full audience as we leave the market. Erin screams most the way home. Erin has autism.
It is five years earlier, and Erin is almost always on those waves. I take her to preschool and meet up with her full-time aide, Kathyrn. It is the first summer after receiving the autism diagnosis. Erin is extremely anxious, obsessive, and mostly uses language to repeat what she hears (echolalia). At drop-off, Erin is crying. “I’m Tarzan, OK?” is all that she can say—over and over with her finger in the air, anxiety flowing out of her like a thick fog. This is her script, and she needs me to say “OK” each and every time, or she is completely lost in the tears and rapture of her nerves. Her anxiety is so extreme that her body actually pulsates. Kathryn is kind and loving, but she will not say, “OK”. I leave in tears.
After two and a half hours of non-stop “I’m Tarzan, OK?”, I am back to pick Erin up. She is red-faced and exhausted, chewing her hair and whatever else she gets her hands on, but she has stopped insisting that’s she’s Tarzan. The song that she had been riding on the record in her mind has skipped and moved on. Later it will return or morph into yet another script—just as full of fear and desperation. On those waves, crashing and crashing, we will ride together until something knocks us ashore. Sometimes it is a Barney video, a bath, a ride in the car… as unpredictable as the moments when we find ourselves on the shore, and we rest. We prepare for the next swim, and each time she falls back into the ocean, I jump in with her.
This is all Erin. Her autism affects her ability to communicate, form friendships, and “behave”. Autism is simply a part of Erin, and I accept all of her. She is fortunate to grow up on this beautiful island with a community of amazing people. When Erin does fall apart in public, I may have an audience, but most of them are good, caring islanders who might even know of Erin’s challenges. She is a beautiful, loving, and affectionate girl. She enjoys playing with her sister and brother, and she is funny and sweet. She is smart and inquisitive; you just have to jump into her world with her. Whether I am peeling her off the floor or amazed by her participation in choir class, I am there with her. I have jumped in, and I am grateful every day for all the wonderful people on Orcas who jump in, too.
Now almost ten years old, Erin is not in the ocean as often as she used to be. But when I look out on the horizon and see her there on the waves, stuck in a seemingly endless loop—our eyes meet. This island protects us and keeps us safe, and Erin’s journeys in the ocean are all part of the story… but now she is learning to swim.