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AbledConditions Post Banner shows a New York Times illustration by Lauren Nassef depicting three open milk cartons seen at an angle with a 'Missing' message on one side and the image of a male teenager 'walking' through the side panels. The headline reads: Autism: How to prevent children and teens from wandering and how to respond if they do.

The Death of Mute Autistic Teen Avonte Oquendo Heightens Wandering Fears

 

In the lexicon of Autism, it is called ‘wandering’ or ‘elopement’ and a study published in the journal Pediatrics in 2012 found that nearly half of the children diagnosed with Autism Spectrum Disorder (ASD) have done it and more than half of those who do end up missing long enough to cause concern.

 

The study, which conducted an online survey via the Interactive Autism Network with the families of over 1,200 children with autism and over 1,000 siblings without autism, found that the more severe the symptoms of autism, the more likely the child was to bolt.

 

Study researcher, Dr. Paul Law, Director of Medical Informatics at the Kennedy Krieger Institute in Baltimore, Maryland, said – at the time – “We tend to hear about the most traumatic stories on the news. It’s just the tip of the iceberg of what parents are experiencing with this issue”.

 

Today, the news delivered on that sad, but true, observation when it was reported that DNA analysis confirmed that human remains that washed up on a beach in Queens, New York were indeed those of Avonte Oquendo, the non-verbal 14 year-old autistic teen who bolted from his school in October and went missing.

 

Avonte brought tragic realism to the statistic in the study that more than 25% of children with autism who bolted from home were in  danger of drowning – barring any sinister interference by others. The investigation has yet to confirm the cause of death and, in the face of various body parts washing up, ruled out dismemberment.

 

Because of his fascination with trains, the police investigation targeted rail yards and subway stations, areas where Avonte had been found before when he had wandered off.

 

The term ‘wandering’ is a bit of a misnomer because these children and teens usually have a specific obsession with something and a goal of trying to find it, rather than wandering aimlessly. That’s why many prefer the term ‘elopement’.

 

Regardless of the terminology, it’s a nightmare for parents.  Lori McIlwain, Executive Director of the National Autism Association, pointed out in a New York Times Op-Ed piece in November last year at the height of the Avonte Oquendo investigation just how real a nightmare it is, “

 

The day Avonte went missing, a Friday, a 12-year-old boy with autism was in a medically induced coma in Oakland, Calif. According to reports, he had wandered from his mother in a parking lot and entered eastbound traffic on I-580, where he was struck by at least one vehicle. By Sunday, another child with autism had gone missing: 5-year-old Devonte Dye wandered from his grandparents’ home in southeast Missouri. Tragically, he was found the next day, drowned, in a slough near the St. Francis River.

 

Since 2011, 41 American children with autism have died after wandering, or “bolting,” from caregivers. Water is often a fatal draw for these children. Since April of this year, 14 out of 16 deaths were from drowning.”

 

She’s the parent of an autistic son, Connor,  who had bolted in 2007. His fascination is with highway exit signs. One day, like Avonte, he wandered away from his school and headed toward a four-lane highway.

 

“Luckily, a passing driver noticed our son; the driver turned around, just in case. When Connor failed to answer a few basic questions, he was taken to another nearby school. That school called the police. The police had no idea how to deal with Connor: An officer mistook our mostly nonverbal child for a defiant rule-breaker who needed some “tough love.”

Finally, a staff member at the school reached me, but exactly how long Connor had been missing by the time I got to him, no one could tell me. Connor was hysterical, shaking. I scooped him up in a hug, whispering through my own tears, “You’re O.K.”

 

That was our big wake-up call, but it didn’t end there. Connor’s wandering had started in day care and continued through school. He slipped out during classroom transitions, as Avonte did. We found ourselves keeping Connor home on days we feared it might be easier for him to slip away. Here I was, an advocate for others, yet I could not keep my own child safe.

 

Today, the National Autism Association, where I work, provides information and resources for caregivers. Back then, there were no fact sheets to support our pleas for greater vigilance. And, to this day, there is no guidance from the Department of Education; no protocols, not even a mandate to notify parents of any wandering attempts. At the N.A.A., we often hear from parents who have a child who cannot sleep, forcing caregivers to barricade doors and take shifts staying awake. Others are so desperate that they hide their child’s shoes to slow them down in case they escape.

 

Under federal criteria, which most states follow, the Amber Alert system can be used only for children known to have been abducted. Wandering doesn’t count. Instead, the refrain most often thrown at parents is simply “watch your child better,” or “find a school that will watch your child better . . . Now 13, my son wears a tracking device, and is learning ways to keep himself safe. In his room are miniature replicas of his favorite exit signs, and a laptop, which he uses to draw them whenever he likes. He hasn’t attempted to reach the highway since getting the laptop. He’s also at middle school now, cared for by an amazing staff. While Connor still has phobias that can make bolting behaviors difficult to prevent, we finally have the resources to help keep him safe.

 

But not nearly enough is being done to keep children like Avonte from disappearing. Too many parents are still going through the anguish of losing their wandering children.

 

 

7 Steps To Prevent Your Autistic Child From Wandering

 

Autism Speaks has put together some information resources for parents of autistic children to help keep their kids safe at school:

 

  1. If your child has a tendency to wander, it is critical to address wandering issues in his or her Individualized Education Program (IEP). If there is a history of wandering incidents, it’s important to call a meeting with school staff, administrators, and your child’s IEP team to make them aware of these past situations, as well as educate them on the autism wandering issue in general. If something changes or an incident occurs, you as a parent have the right to amend the IEP and adjust the particular items, at any time. 
  2. Write a letter requesting that you always be informed, immediately and in writing, of any wandering incident on or off the campus. If your child requires 1-on-1 supervision, be sure to make this extremely clear to school staff – and clearly documented in the IEP – and emphasize that under no circumstances should your child be left alone at any time. A sample letter can be found here. 

 

  1. Carefully document all wandering-related incidents. Sharing this information with the staff at your child’s school will help prepare them if such an incident occurs at school. For example, where has your child been found in the past? What are his or her fascinations or obsessions? Where would he/she most likely be drawn to near campus? 

 

  1. Try to eliminate all possible triggers that have led to wandering in the past. For example, if your child is drawn to water, be sure that all pools, lakes, etc. in the area of the school are blocked off so that there is no chance your child will be able to access them.

 

 

Read the other 3 tips and discover more resources at Autism Speaks.

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