THE BLOG
04/02/2014 05:09 pm ET Updated Jun 02, 2014

The Light of Awareness: Autism Awareness Day and the Search for Avonte

Today is World Autism Awareness Day, a day when autism organizations raise awareness of people on the autism spectrum with the hope that more people will be aware every day. For a few months last fall, New Yorkers were.

On October 4, 14-year-old Avonte Oquendo disappeared from his school in Queens, and while his search may have been a shared NYC experience, with subway announcements and signs papering the city, I think it had a different resonance for people who have seen a severely autistic family member bolt away, people who know the dawning of worry when they sense that their child or sibling is not in the house, the panic that sets in at seeing the open door. The people who are always aware.

I am one of those people. I can still see clearly my 8-year-old brother running down the road before I chased after him almost 20 years ago. He had taken off from home for parts unknown, perhaps a nearby playground. We never knew for sure. That was the farthest I had ever seen him run before spotting him. He was almost out of sight.

After that incident, my parents installed additional locks on all our doors and windows.

His bolting wasn't just a problem at home. I remember clutching his hand tightly at the mall so he wouldn't disappear into the crowd. One day at McDonald's, he somehow escaped out of the play area into the parking lot. We have no idea how he slipped through the nets and bars. And we have no idea why.

When I watched the security footage of Avonte running out of his school, I thought, I know that motion. I recognize that speed, that force of will so deliberate yet nonsensical, it's unclear whether the person is running from or running to. Just a body in motion staying in motion until someone stops it.

What New Yorkers shared was that we all wanted to stop Avonte -- find him and bring him home. I had fantasies of discovering him on the street. The Department of Education's accountability ensured that his face was inescapable in the NYC subway system, and I kept seeing his face in strangers. My desire to see him was so intense that back in October, when there was still a strong hope of finding him, I jotted down a few lines to try to describe the experience:

I thought I saw Avonte
Upon the thoroughfare
But then I saw his eyes betray
A not-so-vacant stare

Yet what made the search for Avonte so important to me was not just that it was a shared experience among New Yorkers but that suddenly so many people cared about the fate of a child who would otherwise have been invisible to the mainstream media. Children with severe autism, those with no speech like Avonte or those with limited speech, rarely enter the public consciousness. More often it's the higher functioning autistic savants or Asperger's Syndrome children who give Autism its public face. One rarely comes into contact with the moaning or the hand-flapping or the hand-biting that accompanies the lower end of the Autism spectrum. Those children's stories are often only found in closed online forums or insulated within the walls of family homes.

As the weather grew colder, I stopped looking for Avonte's face in the people on the subway and city streets. He wasn't there. Just as Avonte had slipped away, New Yorkers' hope of finding him began to as well. Then, in January, Avonte's remains were found on the shore of the East River.

His death prompted many reactions on news sites and social media, and while I always want more people to be aware of the challenges of caring for people with severe autism, I found it a bit incongruous that everyone in the city of New York was sharing an experience that is typically smaller and more personal. I wonder how different this story would have been if Avonte had bolted from his home and the city had not been responsible for losing him. With no subway photos or announcements, would anyone have cared? What if Avonte had been in his late 20s (the age of my brother today) instead of 14? Would the city have rallied around a missing non-verbal adult, perhaps overweight and bald like my brother, the same way they did around a missing non-verbal child? I still would have had the same emotional reaction, but New Yorkers most likely would not have.

People with severe autism cannot be responsible for themselves, so they need others to be responsible for them -- their families, their schools, their government. It takes work and commitment and it can be easy to fail. For the few months that we all searched for Avonte, New Yorkers had a shared window into that kind of responsibility, but those of us who know that responsibility firsthand were both looking in and already inside.

But a shared experience, even if it's just a window, can lead to change. New Yorkers are more aware of the problem of people with autism wandering and bolting, and now New Yorkers are getting Avonte's Law, which provides optional GPS tracking devices for children with autism who may bolt or wander. It may replace the pieces of masking and duct tape that my mother would attach to my brother's clothing, on which she would write his contact information. There is a question though of whether the children will keep these devices on--we used to have trouble getting my brother to wear a hat, for example -- but GPS tracking devices would help locate a missing child, and, more importantly, alert family members or school administrators when that child has exited his home or school. Those precious minutes between the child bolting and the realization that that child is not in his room or class would be saved.

The day Avonte's death was confirmed, I was reading the late Amiri Baraka's poem "The Incident" and these lines struck me:

"Pictures of the dead man, are everywhere. And his spirit
sucks up the light. But he died in darkness darker than
his soul and everything tumbled blindly with him dying..."

Just as I will always remember my brother running down the road, I will now always remember the ubiquitous pictures that forced an entire city to confront what for me is so familiar. My brother no longer bolts the way he used to, but the possibility always exists. Most New Yorkers do not know what it is like to have a family member with severe autism, but they can now share more understanding. For many months, the search for Avonte sucked up the light, but now at least there is a little more light of awareness in everyone.

And if you find that light of awareness, you may want to make it blue.