This ‘In Their Own Words’ is by Joshua Bongawil, a former intern at Autism Speaks. His 28 year old brother Andrew has autism. They live in American Canyon, Calif.
When Andrew takes Louie for a walk, he strolls as if both of them are in their own world. Andrew, in other words, is calm and focused, when he has command of our poodle. The solace found in a relationship with a pet is one of the traits sometimes associated with people with developmental special needs. This is a part of Andrew’s autism. I notice this, because I walk with them too.
One reason I describe Andrew’s style of walking the dog as “other worldly” is because his stride is unique. He often flails his arms mildly, turns his head around, or holds the dog’s leash over his shoulder like a heavy bag of footballs. He does not walk like this because something is wrong with him. These physical attributes are a part of who he is. The other reason Andrew’s world is unique has to do with an encounter with a stranger in a uniform on a spring afternoon.
Our neighborhood is at the foot of a hilly area which can be a very windy place, so residents must take caution when walking the streets. The caution also refers to the strong security placed in a new suburban development. I never thought Andrew’s movement or how he walked with Louie could be suspicious until a police officer asked if he could talk to Andrew.
I was taken aback, because Andrew is non-verbal. The ironic “conversation” went like this.
The police officer stepped out and asked, “Can I talk to you?”
I told him, “Are you talking to us?”
When he affirmed his interest in my brother and me, he asked, “Where do you live?”
I confirmed our street name, as he maintained his watchful eye over Andrew, who stood in his place, but kept turning his head around, as if to say in his mind, “What the heck is going on?” I decided to watch the officer’s next move.
He looked at my brother, raised his hands around his head but did not touch him and asked, “Is he…?”
“He has special needs,” I replied.
The officer smiled and walked away, but not without some extra courtesy.
I recalled that when Andrew is in his world with Louie, he moves as he sees his fit. Well, this polite cop entered that world. When Andrew meets new people, he doesn’t know how to say, “Hi!”, but he knows how to shake hands. That is exactly what he and the officer did before he went back to his car.
I admit my heart stopped when the cop car approached us from behind, but it started beating normally, when the officer drove off. My brother and I were literally frozen in moment of confusion, because unless this police offer knew what I meant by “special needs”, a completely different result may have taken place.
But it did not. I shook the officer’s hand and asked for his name. Officer Mark greeted us goodbye and left us alone.
Autism is a world. That is not just the name of a 2004 documentary, but perfectly describes this experience. In Officer Mark’s world, a young man wearing a baseball cap and casual workout gear, flailing his arms, shaking his head while pulling a dog leash raised some signals. In Andrew’s world, he was simply taking a walk. What happened, however, when their worlds came together, was not a clash, but an epiphany.
Andrew sensed he was not in trouble. Officer Mark knew Andrew was simply taking a walk. I knew that when there are more people like Mark who open their world to those like Andrew, a walk in the neighborhood is a bit easier for everybody.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
This is a guest post by Gene Bensinger. Gene is on the Advisory Committee for the Autism Safety Project, and a parent advocate on issues affecting adults with autism.
November 22, 2005. It was just before Thanksgiving. I was reading the Chicago Tribune when a headline caught my eye: ”Autistic Man Dies in Police Struggle.” The incident had taken place just two days earlier in a much sought after group home located in Des Plaines, Illinois, a fairly affluent, safe suburb of Chicago. The article went on to describe one escalation after another as police tried to subdue the young man with autism, first in his house, then in the fenced-in backyard. The police were called to the home after the young man had severely bitten a caregiver who had tried to restrain him, the reason for which we’ll never know. 30-year-old Hansel “Yusuf” Cunningham never made it home to spend time with his family that Thanksgiving that year. I thought to myself, “How in the world could this have happened?”
As the parent of a then 12-year-old son, I had an emerging understanding that my easily redirected child would soon be a physically bigger and much more visible teen. He would experience the effects that “raging hormones” deliver during puberty. He would ultimately live as an adult in a community that might appear to him a hostile environment of loud noises, confusion, and chaos. So I decided to study the issue of autism safety in detail.
I learned that safety isn’t yet the important part of the autism toolkit it needs to be for everyone in our community. Unlike so many other issues, this is one where the autism community shares widespread agreement. Let’s build some bridges and speak with one voice so that all of us can live safer lives.
As I see it, a big reason that problems escalate out of control is that the behaviors we see in the autism community on a regular basis are the exact same behaviors law enforcement, security professionals, first responders, and others like school administrators have been instructed to recognize as potentially uncooperative, hostile, or even threatening. The problem is that the “book” they used for training is wrong. The good news is that many are rewriting their “books” and getting the training they need. But there’s still a huge gap to bridge when you consider the target audience we need to reach is over 2.5 million professionals!
Rather than risk triggering a tragedy like the one highlighted above, we as a community need to teach law enforcement and others who interact with people on the spectrum to recognize some simple, basic markers, use common, easy de-escalation techniques when needed, and call for help and support from trained specialists. But it’s also not fair to put all of the responsibility on others.
I don’t think we’re doing nearly enough in the autism community to safeguard ourselves or those in our care. Everyone needs to understand and work to mitigate the main risks people with autism may face, like wandering, drowning, and becoming easy targets of crime and abuse. These risks are very real and often appear when least expected.
That’s why I am thrilled that Autism Speaks stepped forward to create the Autism Safety Project, a stand alone website that links professionals, individuals with autism, parents, teachers, judges, and others to the tools they need. If you haven’t yet visited the site, please do! Then reach out and make sure the local professionals in your community or on your team receive specialized training. If they haven’t yet, ask them to! My experience has been, after they study the issue, the answer is always, “Yes.”