Oh the Places You Will Not Go

(with a child with autism)

On my way to work I sometimes walk a short stretch of the Burke-Gilman trail, an expansive 27-mile path for pedestrians and cyclists in Seattle. As I merge onto the trail, I make a concerted effort to become aware of my surroundings. I walk on the side of the track, my arms tucked in at my side. Cyclists reach top speed and I’m on alert for that familiar warning “On your left” which means don’t move to your left or you will become a human bike rack.

I think about my son with autism almost every time I walk this trail. This is one of many places my son cannot go. Arthur is 15 and has autism. Arthur is not always aware of the world around him and that split second instruction to watch your left side would be lost on him. He would inevitably stray and wander along the path, reach for pine cones, splash in puddles and use the middle yellow line as a balance beam, gloriously oblivious to determined bikers commuting to and from work who rightfully expect the rules of the trail to be followed. Arthur runs a big risk of being injured if we were to stroll along this thoroughfare. All those subtle rules and regulations! Arthur often does not understand the rules and regulations.

How do I tell my child who has very limited receptive and expressive abilities that rules are followed to keep order, maintain predictability and uphold safety? And how do I tell a speeding cyclist that much of my son’s disability manifests in his behavior?

So there are many places we do not go. 

When Arthur was little, one of the most challenging aspects of raising this beautiful boy was not being able to run a simple errand. Errands are a mandatory duty of the human existence. Banks, grocery stores and department stores are a land mine of bright lights, unusual smells, strangers and waiting. I would sit in my mini van longing to deposit a check, run in for a gallon of milk, or pick up soccer shoes for my daughter. The tantrums, the odd behavior, the stares, the abandoned shopping cart filled with food, the failed attempts at waiting in a line left me exhausted, hopeless and feeling isolated.

I stopped going certain places with him. I went grocery shopping, to the bank and basically any place of retail without him. Errands become a calculated plot. A mad dash, done before or after work, in-between my daughter’s softball game and before the bus pulled up in front of the house.

Over time I realized this was not sustainable for me or for my son. I had to run errands and Arthur needed to be out in his community.

It took several years of starting slow and gradually building on successful outings, but at age 15, he can tag along most short errands with success. Arthur knows the names of many people on our regular errand runs. Many retailers on my block refer to him as The Governor, usually followed by a high five.

I don’t take him for the one-hour grocery run and we still have challenging moments in public, but time has helped me care less if my son weirds people out. I’ve learned not to make eye contact if I feel the burn of an unkind stare. Lately I find, on more occasions than not, when I do lift my eyes from retrieving rolling apples from that perfect pyramid display, I am met with a kind smile and even a helping hand.

I have a responsibility to keep my son and others safe so we don’t walk the Burke-Gilman trail, attempt to purchase an appliance at Home Depot, or visit the Tacoma Glass Museum, but we do get out. My mini van feels less like solitary confinement these days.

Tips for Errands and Outings:

Plan: I keep a dry erase board in the car so I can create a quick picture or social story to explain unexpected occurrences such as a traffic jam, the store is closed, or an unforeseen change in the schedule.

Exposure: Return to familiar location/destination and even if you drive by the site for 3 weeks and never get out of the car, you are potentially closer to a successful outing.

Small steps: Plan short trips to get familiar with the environment and social interactions.

Gradually build on success: Increase the time (or size of list) as your child succeeds.

Persistence: There will be setbacks. Keep trying even if there is a failed attempt.

Be prepared: Bring along activities or toys your child prefers. Give your child a task such as picking out an item of a certain color, size or shape, comparing prices or checking items off the grocery list.

Modify expectations: So you barely made a dent in your to-do list. Quit while you are ahead and celebrate the success! So there won’t be milk for breakfast, but you are helping build an important life-long skill for your child.

Take a deep breath: Decide ahead of time how you will respond if anyone has a negative reaction to your child. It may be helpful to remember that this is an opportunity to educate about autism and a means to a positive community connection.

Ask for help: If you don’t feel equipped to handle the outing, recruit a family member or friend to provide support in case challenges arise.

Build community: Educate and inform owners, managers and staff about your child, what helps, what doesn’t, your child’s interests and needs. Open communication is important to provide support and understanding if a negative situation occurs

The reality is there are places we can’t go and my child still has meltdowns in public. Some of the time I want to melt down right along side him. I’m not always filled with grace and endurance when I’ve got 4 minutes to deposit a check, but I’ve learned to dig deep to find the patience, strength and even a little humor to handle the unexpected. I also find comfort knowing that Arthur is a part of humanity and his greatest gift is expanding the definition of what it means to be normal.