Amicus Curiae Carson v. Health and Human Services
Dachel Media Review: First Responders

National Autism Association in NYT on Wandering, Avonte Oquendo

Avonte New FlyerManaging Editor's Note: Thank you to Lori McIlwain and all of our friends at National Autism Association for this urgent message to the American public about wandering, autism and tragedy.

By Lori McIlwain

The Day My Son Went Missing Wandering Is a Major Concern for Parents of Children With Autism

NOW in its sixth week, the search for Avonte Oquendo, a 14-year-old boy from Queens with autism, is shining a light on the issue of wandering among people with autism. On Oct. 4, Avonte managed to slip away after lunch from his school in Long Island City — even though he was known to wander during classroom transitions.

While most people associate wandering with elderly sufferers from Alzheimer’s or other types of dementia, a recent study published in the journal Pediatrics found that 49 percent of children with autism were prone to the behavior. Given the prevalence of autism — at one in 88 children, or one in 50 school-age children — it’s clear this is an everyday concern for many thousands of parents.

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.

Even as a campaigner, I did not appreciate the full magnitude of the issue until my own child went missing in 2007. Connor was 7 years old when he left his schoolyard, unnoticed, through an unlocked gate and made his way toward a four-lane highway.

Many children with autism have particular fascinations, and Connor’s is with highway exit signs. For our family, driving up and down the interstate was a fun day out. We never suspected he’d attempt to get there on foot.

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.”

Imagine if that were the advice given to those who care for Alzheimer’s patients. In fact, the Department of Justice provides about $1 million a year for first-responder training on Alzheimer’s-related wandering and tracking technology. There is no equivalent funding for autism-specific wandering and no more than a promise, in 2011, from Kathleen Sebelius, the secretary of health and human services, to give the issue “serious consideration.”

If consideration had become action, perhaps Avonte would be home safe right now. There is still a lack of awareness in schools. Simply to provide better teacher training on wandering would help prevent future disappearances.

So where is the federal autism program on wandering prevention? Yes, budgets are tight, but here is our choice: We can spend the money now on awareness and training, or later, on huge, intensive searches for missing children.

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.
 

Lori McIlwain is the executive director of the National Autism Association.

Comments

Alyssa Montez

I say that the new appointed major of New York should be getting involved in reaching for Avonte. Please all officials help find this child. Bring him back to his family. The search should start form the beginning and have new eyes on the case. I pray for your safe return Avonte and my prayers go out the the family.

Barbara Barber

Please, lets keep Avonte in the media, that he will not get lost in the system, put to the back burner. Please continue with updates on this sweet child!

D Robinson

Thank you very much for this. I am not personally the parent of an autistic child but AQ has captured my heart. I think about him as I pull my coat together a little closer during these cold days and pray for him. I wondered when seeing the brief clip on news footage 'why he ran away..did someone do something to him or did something happen?' This is very good to know and as someone who loves children I vow to make sure that I keep my eyes and ears open for children. Something as simple as a special emblem anything that can be sewn on every article of an autistic child's clothing...something anything to help. I agree with your assessment and praise this piece. Thank you so very much and my prayers go out to Avonte, his family and anyone who has experienced this type of devastation.

Vicki Hill

Thanks for posting. Another one who is missing right now is 28 year old Luigi Araud. I know Luigi. He went missing on Saturday from a Fort Worth, TX suburb. A police officer spoke to him on Monday in a Dallas suburb, but the police officer did not realize that Luigi was missing. Luigi bolted into a field. This is what happens to adults with ASD - if the police don't realize they are missing, they look normal and they haven't broken any laws, then the police assume that everything is okay. But it is not. In Luigi's case, he left home without his wallet, without his cell phone and without transportation on a day in the 70's. But cold weather finally arrived; it was 29 degrees last night. Please pass the word and help get Luigi home.

beth johnson

"Constant stress and fear" and "PTSD" from wandering. These are terms our family can relate to. The times we have had an escape have been the most rapidly aging in my life.

Frank

Prayers from iLOC Technologies that Avonte is miraculouisly found safe! And when he is we look to connect with the Oquendo Family to provide the best wandering prevention safety solution available for individuals with autism called the TriLOC 3G GPS Waterproof Watch. Please let this miracle happen for this family! To find out more please go to www.iloctech.com

SarahW

CJ,

My son's radio tracking bracelet is made by LoJack Safety net and is coordinated through our county sheriffs office. One of the officers came out to my house, met with me and my son and actually fitted the bracelet on my son and registered him in the police database. You may want to check with police in your area to see if they have a program.

You can check availablity by zipcode, here is the web site:
https://www.safetynetbylojack.com/Caregivers

zipcode search is at the bottom: https://www.safetynetbylojack.com/

SarahW

Thank you for this article. As a parent of a child who bolts, I think there needs to be a coordianted effort among all autism agencies to raise awareness about this issue. I can relate as I have experinced many bolting episodes with my son. Three of these episodes have been life threatening close calls. One happened when my then 3 year old son bolted from me at a very crowded swimming pool- I found him bobbing in the Jacuzzi (fortunately I had purchased a swim vest the week before). Another time he bolted from me while we were on a nature walk and jumped into a muddy river - I had to jump in after him and pull him up by his t-shirt as he was sinking- there waas noone around to help. The third close call was when he bolted from the house early one summer morning and wandered down to the beach in his underwear to take a swim. A woman walking her dog spotted him and dialed 911. This third episode resulted in him getting a radio bracelet strapped to his ankle so eh can be found and double locks and alarms on all our doors. Living with an child with autism who bolts means constant stress and fear- this is our reality everday.

Kristine

Thanks Lori. NAA provided the start-up of Project Lifesaver in my county and my son was the first person on it. Eventually what worked for him is moving- we moved to a different neighborhood because the house we were in was located close to bldgs with elevators and that was too tempting. The other benefit of Project Lifesaver is that our law enforcement was trained on autism-related wandering.
We've since moved out of that area and my son has a growing understanding of dangers and "stay with mommy" I don't think it'll ever be 100% and I know I'll never get over the PTSD of his wandering.

CJ Ramseyer

Great article, more people need to be aware. I am very fortunate that for my son, who has been known to wander, the school system was very aware of this behavior and identified it right away as an issue.
Among other things they identified, they also keyed in on the fact that a program at another school would be ideal for him to continue to mainstream him as much as possible, but also give him the additional resources he needs. Today, at least for now, he does not wander, but he has MANY more eyes on him throughout the day. I am very fortunate.
In your article though, you mentioned a tracking device. I am very interested to have you send me more information about it.
Thanks in advance.

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