When I watch my boy walk away down the path to school, it feels like my heart is outside of my body and wandering off into the world, away from my ability to protect, vulnerable to pain, potential suffering, and to annihilation.
I imagine every mother feels that way as she watches her heart walk away or board the bus every day. We wave good-bye to our heart and sigh and hope our heart makes its way back home at the end of the day, back safely where it belongs.
Just like my feet are pulled to the ground by the forces of gravity, my has-been-broken, breakable, will-be-broken-again actual heart is governed by another invisible force in my world: autism. Autism is at the center of it. I revolve around it like a clumsy satellite in a topsy-turvy trajectory. It defines my chaotic order; I am governed by its natural law.
The autism mom’s heart does wander. It wanders sometimes to the forbidden land of ‘what-if’. It wanders through the darkness of night and it fumbles back towards the light of day. But what no one ever told me when I first entered this place was that my figurative heart could one day literally wander away from me, it could bolt at any second, for autism is a wanderer and not the metaphorical kind.
Over half of autistic children have an inherent inclination to wander off. In the autism community, it’s formally known as elopement. My little one was a “bolter,” meaning one second I’d be searching through the diaper bag for a sippy cup and some goldfish crackers and three seconds later he’d be halfway across the playground running towards the street. He, like many kids with autism, has almost no sense of danger, compared to my own overwhelming sense of it.
One time while living in Ottawa, Ontario, the doorbell awakened me at 6:30 in the morning.
A strange woman was holding my non-verbal two-and-a-half year old. She picked him up in the middle of the street, running wild and free in his pajamas and bare feet at the end of the street. She just happened to notice my wide-open front door as she drove by and then pulled over to catch my little wanderer and bring him back to me.
Last night, while scrolling through my Facebook feed, my heart skipped a beat and sank – again. Another mother’s heart went wandering and this was an alert for the public to help find her heart and bring him home again. I said the same thing I always say. “Please, God, not another one…”
Unless you are like me, immersed in autism and receiving email alerts and Facebook posts related to all news autistic, you may hardly ever hear of such incidents. There were six that came to my attention just in April alone, and thankfully none turned tragic.
If you have heard of this phenomenon happening before, I would bet it was one particular incident a few years ago when another mom’s heart wandered off on his own and never came home.
Back on October 4, 2013, a 14-year-old non-verbal autistic boy named Avonte Oquendo went missing after walking away from his school in Queens, New York in the middle of the day. Avonte would never return to school again, never return to his family, and never leave the collective consciousness of an expansive community of parents and loved ones whose biggest fear came true for one of their own.
For months, authorities searched for Avonte who was prone to wandering. Despite his mother’s warnings to the school, Avonte was able to escape, and 15 minutes went by before teachers realized that he was not in class. It took a half hour for the school administration to find out, and an hour before public safety officials were made aware.
A city, a country prayed for his safe return but as time went by, most lost hope – except Avonte’s mother.
Even on January 13, 2014, when police reported that an arm, legs, underwear, size 16 jeans, and size 5½ Air Jordan sneakers washed up in the East River, Avonte’s mother still maintained, “It’s not Avonte until it’s Avonte.” They identified the remains as belonging to Avonte some five days later. A mother’s heart was broken.
Autistic children are drawn to the water. Accidental drowning is the No. 1 leading cause of death of children with autism. When an autistic child goes missing, the first place family and first responders will search is any nearby water sources.
Most elopements occur during family gatherings, outdoor events and activities, times of transition such as moving to a new home or starting at a new school, or during times of stress when an autistic child might bolt or escape on his or her own.
Parents are often blamed when this happens, but the sobering truth is that elopement has been reported as a major stressor in the families affected by autism and families already often feel unsupported and isolated in their autism journey. They avoid outside activities and outings because of it. They lose sleep over it.
In a 2011 survey conducted by the Kennedy Krieger Institute’s Interactive Autism Network (IAN), parents reported that only one in seven families received advice from a pediatrician or other pediatric specialist on the concerns of autism-related elopement. Two out of three families reported a close call with traffic and about a third of the families reported a near drowning.
Elopement is a major concern in the autism community. As a result of the tragic loss of Avonte’s life, new legislation has been introduced to help further the safety of children with autism who wander, through awareness and monitoring technology used to track an autistic child’s whereabouts should they go missing.
Kevin and Avonte’s Law of 2016 addresses autism-related elopement as well as Alzheimer’s-related wandering. This legislation provides grants to law enforcement agencies and non-profits to provide training to prevent wandering and implement lifesaving technology programs to find individuals who have wandered.
Many of us in the autism community have been stunned by a recent report that shows people on the autism spectrum live shorter lives, on average 18 years less than neurotypical peers. Not because autism itself shortens the lifespan of people with ASD per se, but because of correlating health conditions and the higher risks the diagnosis poses.
The leading causes of death for young adults and adults with autism are epilepsy and suicide, according to a recent study in Sweden.
According to the study conducted by Autistica and published in The British Journal of Psychology, compared to the global average age of death of 70.2 years for those without ASD, the average age of death among people with ASD and no intellectual disability was 53.87 years, while for people with ASD and intellectual disability it was 39.5 years.
Those are some pretty tough statistics to process for a parent like me whose heart that wanders might have a shorter journey than someone else’s.
I believe, in my unabashed and almost fatalistic acceptance of autism in the Divine Plan of all things here on earth and in the human experience, autism can do two things for humanity – parents, family, friends, teachers, strangers on the street. It can bring out the worst, the cruelest, the most apathetic, the darkest pieces of a person or the absolute best, the highest form of kindness, the purest levels of love in existence.
Sometimes I say out loud, “I’m so lucky to be an autism mom.” You might ask, “How?” since that concept of ‘lucky’ is far from society’s concept of lucky. But the truth is, being touched by autism has made me a better person, a better mother, a better me. It’s given me strength and compassion for others, not to mention lightening-fast reflexes.
My little wanderer has led me towards a deeper meaning of what it means to be alive. If you’re lucky enough to know someone with autism, you realize they can show us what it truly means to love and the meaning of truth, of purity. Autism can even teach us about what it really means to be human. It could make us kinder, more open, more accepting of everyone. It could even save the world.
By Jean Perry