Come As You Are is a Family Affair

My daughter, Audrey, is 24 years old and autistic. Our family has more than two decades of experience with autism acceptance and “coming as we are.” Here are 9 things that “come as you are” and Autism Acceptance Month bring to mind for me.

No one exemplifies “come as you are” like Audrey. She approaches every activity and experience in life as much as possible on her own terms. She dresses herself in familiar, comfortable clothes, even if they’re not weather-appropriate or are too threadbare for public consumption. For Audrey, the best treat at Starbucks is a paper cup filled with cold water (no ice) to go with her chocolate chip cookie. When she’s happy she makes big movements with her arms, and big sounds with her voice, with no thought to how other people will perceive her. She teaches me to see cool things I never would have discovered for myself, like how the mirrors at either end of the dairy shelves at the grocery store reflect our smiling faces into infinity when we lean in and look at them from just the right angle. And how little it matters that other shoppers might find this a strange thing to do.

“Come as you are” means the whole family. When my girls were little, I was a tired, single mom managing work, all the usual parenting stuff, and an autistic child who needed constant supervision during the day and slept very little at night. Just like Audrey needs people to accept and support her differences, our whole family needed support simply to have friends or join community activities. There were many times when even picking up a box of crackers or a bag of fruit for a potluck felt like too much. “Come as you are” meant being welcomed with open arms, even if we arrived with empty ones.

Sometimes we can’t all “come as we are” at the same time. Audrey has her needs, her sister has others, and I have my own. It’s hard when people in a family have different, competing needs. It’s even harder when one of those people is at the “higher support needs” end of the autism spectrum. Even with all our love for one another and the best of intentions, it’s a struggle to create the balance and space everyone should have to thrive.

Autism acceptance is what lets us “come as we are.” We choose to go places that welcome us, all our quirks and extra needs included. The neighborhood restaurant where everyone gives Audrey her favored high-five in greeting and no one cringes when she lets out her loudest happy whoops. The aquatic centers that accept my promise that she can swim safely in the deep end, even though she won’t do their safety test to prove it. The dear friends who invite us back again and again, no matter what Audrey’s oddball pursuit of the moment is – trying out all the showers with her clothes on, burrowing under the fitted sheets of every bed in their house.

There aren’t enough places where Audrey and our family can truly “come as we are.” Even services supposedly designed to meet her needs as a disabled person are often not able to do so. The burden of fitting in is still very much placed on Audrey, which means her world is very small, her scope of experience sadly limited.

Making space for us all to “come as we are” is not just about acceptance, but about policies and budget decisions that create the resources autistic people need to thrive. The support agencies and delivery systems in our state are difficult to navigate and are failing to meet the needs of many of our families. Advocating for better funding and more robust services at the state and federal level is crucially important.

It is when Audrey is invited to truly “come as you are” that she blossoms and grows. I have seen her shut down and stop communicating for months at a time when she’s surrounded by people who don’t understand her or believe in her abilities – or she might fall back on behaviors like biting her own hands until they bleed to convey how she feels. But with supportive communication partners who expect her to succeed, she glows with excitement at each small step forward she achieves.  

“Come as you are” means authentic acceptance of how Audrey’s autism impacts her. It means helping her overcome the aspects of her autism that make life hard for her – finding sensory activities that help her body settle and expanding her language communication to reduce her frustrations. It means acknowledging her vulnerability and the level of support she needs from others to live her fullest life.

When families like mine are invited to “come as we are,” it enriches lives beyond ours. I wish everyone could spend an afternoon with Audrey and experience the creative ways she examines the world, her enthusiasm for simple pleasures, her silly sense of humor. I hope that as autism acceptance grows in our society, it brings with it that deeper commitment to generous values and the concrete policies and actions that will make it possible for all of us to truly come as we are.

Resources

Visit the Seattle Children’s Autism Center Patient and Family Resources page to find autism resources for your own family, and connect with advocacy organizations seeking to improve the lives of families and individuals with autism.

You can learn more about Seattle Children’s invitation to “come as you are” for Autism Acceptance Month on The Autism Blog or by following the Autism Center’s Facebook page.