Today we also remember the autistic children who have eloped and died.
A 2017 study found that almost a third of reported ASD (autism spectrum disorders) missing person cases related to wandering/elopement from 2011 to 2016 in the US ended in death or required medical attention. According to this study, accidental drowning caused over 70% of lethal outcomes, followed by fatal traffic injuries. Injuries or traumas found ranged from minor scrapes and bruises to non-fatal traffic injuries, near drownings, dehydration, and physical/sexual assaults after elopement.
Pie chart courtesy of the National Autism Association
Lethal outcomes to autism elopement occurred at a rate of about once a month on average in 2011 to about two to three times a month on average in 2015 and 2016. Children at ages 5 through 9 exhibited the highest number of deaths, while children under 5 faced the highest lethal risk with cases ending in death nearly 60% of the time.
Most people who elope or wander off were found in or near water, traffic, at a stranger’s residence, or in the woods. Low-sensory locations are also a common theme such as abandoned areas and vehicles, cornfields, farms, tree nurseries, libraries and other typically quiet settings.
People in this study were under different types of supervision when the elopement occurred, with non-parent supervision accounting for 45% of cases. Times of transition, commotion, and stress increased elopement risk, and those who were noted to be upset or agitated showed a higher risk of abruptly exiting into traffic or other high-threat situations.
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Today is one of the saddest days of the year for many on the autism spectrum as well as family members and loved ones of children on the spectrum. It’s the day that we remember those autistic children who have wandered away, died, or drowned over the years.
Why are we remembering these kids?
Because children on the spectrum are attracted to high-sensory places. In fact, when a young autistic child goes missing, families are told to head straight to the nearest body of water to look for them.
It doesn’t take much water to drown. A little boy was with his father walking in a park last year and had gotten a bit ahead of Dad, still close enough where dad could see him, when suddenly the child bolted.
After several hours of searching, they found the child face down in a stream in six inches of water. Six inches of water is all it took.
When I mentioned I was writing this piece, people asked me why kids autistic children are drawn to water. It’s because when we’re in water we tend to feel relaxed and comfortable. For someone on the spectrum, like me, I can say that most of us like it because there’s even pressure on our bodies.
Young children only know that they feel comfortable; kids don’t think about the fact that they can’t breathe, and we all know the end result of trying to breathe underwater:
Death by drowning.
How can we prevent these tragedies from happening? If we know we have a runner, we can focus our attention keeping them close. We can teach them to swim. We need to alert the local authorities about our children who wander so they can prepare in the event of an elopement. We can get a service dog.
Most people think service start at $10,000 and skyrocket from there but that’s not true. My service dog, Tye, came from Dogs Nation in southwest Missouri and is a rescue dog, just as all dogs are at Dogs Nation.
They work on a donation basis (and not from the families that take the dogs). They rely on donations of food, flea and tick prevention, dog houses and financial donations.
A service dog can help block the child from entering the water and if a worst case scenario happens and the child hits the water they can alert parents or family members.
Shawn Abell of Dogs Nation told me a story of something that happened nearly a decade ago near her home: A child went into the water and a nearby dog, a non-service dog who was a retriever, did what he was trained to do and went into the water to retrieve the child and saved his life.
Today is an important day for parents, family members, and loved ones of children on the spectrum and a day to educate those that aren’t aware of just how serious a problem elopement is. Amongst deaths of young autistic children, 91% die by drowning and that is way too many. Even one is too many.
If you’re reading this, please share it with families of autistic children and their caregivers so that no child has to go through this again and so that next year we’re not remembering deaths from 2019.
In June of 2017 my daughter was diagnosed with leukemia. She passed away in November. My husband and I have custody of our 11 year old granddaughter. Grieving is taking it’s toll. Last month I was admitted to the hospital for being suicidal.
I think about my daughter all the time. I spent every minute in the hospital with her for 5 months. Telling my granddaughter that her mom was dead was the worst thing I’ve ever had to do. Whenever I go outside for a smoke, I think of my daughter. Whenever I drive the car, it reminds me of the drive to the hospital.
My mind won’t stop thinking suicidal thoughts. My brain constantly hammering me with negative thoughts. I’m hopeless, sad and feel out of my body. I don’t recognize my thoughts or myself. I am so lost. The emptiness is everywhere and I don’t know what to do.
I’ve been treated for depression for years and have had suicidal thoughts the entire time. I spent 2 days in the psych ward. I slept most of the time. I attend an outpatient program and went to a new psychiatrist today. He said my bipolar diagnosis was incorrect and adjusted my medications.
There are days when I sit and think about my son’s addiction. I think about everything I did do, didn’t do or should have done. I start to disassemble his entire journey in my mind trying to find the missing piece. That piece that somehow I overlooked during our struggle for recovery. You see, my son had the worst outcome. The one every parent dreads but would never allow the thought to even cross their lips. My son overdosed and died of the very pills he was given to manage his post op pain.
His addiction snuck up on us like a thief in the night. Carefully and quietly taking us by surprise. Like the elephant in the room, we all knew there was a problem but no one had the guts to say the words. I called it our dirty little secret. Keeping it safe and sound between me and my addict son. Protecting both of us from the ugliness of the stigma attached to this most misunderstood disease. We had brief periods when we were given a glimpse of normal, tricking us into believing the demons had lost their grip and moved on. Then reality would hit as my son returned to his world of darkness and chaos dragging me along for the ride of my life.
His addiction consumed me as I struggled to find places where he would stay safe and I would get a much needed break from the endless worry constantly dancing in my mind. Finding the right fit of rehab was like finding a rose in six feet of snow. I fought to get him in and he fought to get out. Never feeling like the help and support he needed was available wherever he was staying at the time. I’ve learned that helping the addict is like matching fingerprints. Almost impossible. Hindsight is such a great gift if only it arrived before things were said and done, people were trusted and money was wasted on places that made promises that could never be kept.
There are days I feel like I failed him. After all as mothers our job is to keep our children safe. I have a double whammy. I’m not just a mom but also a nurse, a fixer. The very idea that I could not fix my son horrifies me. I allowed myself the sick illusion that I was in control of his addiction and I had the power to fix him. Even when that little voice of reason resonated through my brain, and was echoed by close friends and family, “you didn’t cause it and you can’t cure it” I still continued to beat myself up dissecting every fight, every rehab, tough love, no love or tons of love that we lived during his battle. Being the lone survivor of my sons addiction is a life sentence. I’m still shocked that he is gone. It feels like the beginning of my end. I have become my own personal punching bag. I have a million reasons why his death is my fault. I should have… begins my sentence when close friends try to set me straight.
There is nothing that can change my mind. I should have been able to save him. I had years of practice. So now my painful reality is every parents nightmare. Now, I must figure out a way to go on without him. I have become a sounding board for other mothers living the nightmare of addiction. In the midst of my struggle for survival and my fighting back at the broken system, I have made many contacts. By channeling my anger to make a difference I have stumbled upon people who have started the walk of grief before I joined this club. Together we find strength and hope that the bigger we grow and the louder we become the harder we will be to ignore. Parents whose prior struggle was to save their children. Working together to fix the breaks in the system we have come to know too well. A system that fought us when we were begging for help, a system that turned its back on a generation of addicts pleading for their lives. My son’s struggle has ended. Mine has begun. Everyday is a struggle. Trying to ease the pain that grips my heart and fighting to find joy in a world that has turned upside down. My new normal is just that, so new that even I have trouble adjusting. I pray for acceptance. I pray for peace. Until then I survive one day at a time.
Losing an adult child to Dextromethorphan addiction is a nightmare no parent should ever have to experience.
This is Ethan’s story:
Yesterday, the phone rang with the call some part of me has been expecting for a year or two now. It was the Galax Police Department calling to notify me they had found my 23-year-old son dead in his apartment after they were asked to do a welfare check.
It’s the call no mother wants to get, but after living with his addiction for so long, it was one I expected at the back of my mind. I thought I was prepared, but really, until the phone rang I clung to hope that he would turn his life around. I’m still struggling to wrap my head and heart around the idea that he really is gone. Our communication has been spotty for years, so full of anger at times, I’m used to not hearing from him for days or weeks. Just a week ago, he called wanting a PlayStation 4 for Christmas.
I told him no.
He’d skipped Thanksgiving, I think at least partly because he was angry with me over a Facebook post in which I was thankful for him, despite the fact that he hadn’t always been the son I imagined. I was uncertain over what Christmas would bring. Maybe that was the cloud that’s been hanging over my holiday. I hadn’t even bought him any gifts.
Now I won’t have the chance. Ever again.
There’s a picture of him on the living room wall, holding my dog last Christmas, sporting a goofy toboggan and a grin. When he was straight, he had a lethal sense of humor and was always worried about me.
In my memories, he is the golden haired little boy who trooped behind his older sister and worried her to death as she played; the elementary schooler who liked being smart and didn’t care for basketball or karate; the middle schooler who put on weight and had braces and didn’t like himself as much as he should have. I still loved his smile. He’s also the sullen teen who stretched out, became tall and lean, who gave up band and skateboarding, who put his fist through the wall and refused chores. Yet on good days, he still gave awesome hugs and when he managed a smile, the room lit up.
The good days, however, seemed fewer and farther between the older he got. Instead of correcting his path, he intentionally chose it, repeatedly. We argued, by text, at great length last month about all the wonderful things he thought his drug of choice did for him and whether or not he was happy. When he was high, he thought he was Death incarnate, or maybe god. He was immortal, capable of anything he set his mind to. He hated everything around him except the video games in which he could further escape from reality.
I know he had dreams – of being a video game designer, of having a family, of being a dad. He told me he wanted to be a good dad, which was so sad because his dad was such a deadbeat. My son was great with children. His nieces adored him. But he poisoned his chances at that when he started using drugs, when he chose to keep using them. In many ways, I lost my son when he and his best friend started getting high. He was never the same after that; moody, angry, scary and demanding.
He always thought that since it wasn’t an illegal drug, or even one he had to obtain illegally, that it was safe. Dextromethorphan is a cough suppressant and central nervous system depressant. It’s sold over-the-counter and safe in recommended dosages. Taken a whole pack or more at a time, however, it mimics the effects of PCP. It causes psychosis, seizures, organ damage, and potentially death.
He left home for nearly a year when he was 16, loading his belongings in a rage on the day my grandfather died. Even when he didn’t live with me, I gave him a phone to keep in touch, came to his rescue when he needed me, took afternoons off work to deal with a broken heart. He came home the next summer because they didn’t have room for him any more and I wanted him to finish school, which he did. But frankly, I was afraid of him and his angry outbursts. He turned 18 and graduated, still with no purpose or desire to have one, and I made him move out.
He had a few jobs, wrecked a few cars, and was living in his car when one last accident ended its usefulness. By then he was having seizures. He was unable to work, so I rented him an apartment and took him regularly to Winston-Salem to see a doctor and psychologist. We didn’t know that, even then, he continued to use. Then he found a roommate and they got high together, he went into a psychosis and pulled a Japanese sword on the roommate, and we found out the truth. He was in jail when we cleaned out his apartment and found bag after bag of empty blister packs of drugs he stole, by the way.
I should have known by the illogical rages, I guess. But even though I knew the drugs had caused the neurological damage that brought on the seizures, I didn’t know their effects as well as I would have some widely-discussed street drug.
(ed note: Will be creating a dextromethorphan abuse resource page in memory of Ethan. Love, love, love to you – Aunt Becky)
When he got out of jail, I refused to enable him any more. He moved to Virginia with my parents. He never worked again, except odd jobs at the church and for my family. When my dad’s illness meant mom couldn’t take care of him too, he first rented a house, then lost his job at the church, and wound up in the homeless shelter. During that time he been in a horrific wreck in which he should have been killed. He was high, in a blackout, hit a parked car and went over an embankment. He was ejected and broke multiple bones, including his back, but was not paralyzed.
We were all convinced he’d hit bottom.
For months, back at the shelter, he stayed on the straight and narrow due to random drug testing. He was a house monitor, had friends and was fun to be around again. When he moved into an apartment, the first thing he did was get high. This summer police called me and asked if I was his mom. I expected the next words to be a death notification. No, he was on the streets acting strange.
He spent two nights in jail for public intoxication.
I hate to admit how seldom I’ve seen him since his birthday in April. He was in a downward spiral that I knew I was powerless to stop. I talked to him on the phone fairly regularly and tried to make sure he knew I loved him. Often, his voice was unintelligible and I would strain to have a conversation, never knowing if he was high or if was an aftereffect of the drugs. Sometimes he called in tears from emotional pain. Lately there had been physical pain as well, but he would not see a doctor.
For years I’ve prayed for God to heal him, to help him choose sobriety, and more recently to take away the pain that seemed to drive him.
At last, Ethan hurts no more.
At one level, my prayers have been answered.
There’s a hole in my heart and an ache in my stomach. I’m not sure if writing about it makes it more real, or less. I know now I’ve had almost a day to process and I’m still not sure I’m ready to do anything else. I hate that, right now, so many of my memories are not good, but maybe that’s what I need to get through the next few days. I refuse to take a photo album down and bring happier ones to the surface.
I’ve been touched by how many people have reached out to me; wept again when I realized how many of my friends have already, in some form, walked this path. I don’t know what to tell people I need beyond time. I’m trying to go on with life, to do the things I enjoy instead of trembling in a corner in sackcloth and ashes. I know that may raise a few eyebrows, but my grief won’t change his death, just as it never changed the way he chose to live.
I know I’m fragile right now and I’m trying to take care of myself. I wish I could hug him one more time and remind him again that I love him – no matter what. That not being possible, I want to hold my daughter and granddaughters and feel the breath in their lungs and the beat of their hearts.
I want to somehow know that he’s finally at peace and that I won’t ever have to feel this way again.
I was 19 and had been attending college but, thanks to financial difficulties, had to leave. I moved back in with my parents and started working a minimum wage job, 50+ hours a week almost an hour away from home. Mid-December, in the middle of my shift, I got a tearful call from my mom asking me to come home. I left as soon as I could.
At home, I calmed my mom down so that I could understand her. She dropped the bomb: my dad had been having an affair for about a month, told her about it AND had no intention of stopping it.
I called into work the next day to be home with my mom to make sure she didn’t try anything stupid and when I needed a second day off, I was fired. Guess I got all the time off I needed, right?
I saw my dad about 3 times between the 14th and Christmas. The presents he got us he bought while he was with his girlfriend, and were wrapped in surgical paper from the office because he was there with her the whole time. My mom, younger sister, and I moved out the day after Christmas. It was mostly quiet for a few months, other than struggling through visits with my dad when I was so angry at him I could barely control it.
In March, my aunt came up to visit and we planned to visit my dad at my grandparents house one night. Because of a rumor, my dad ended up staying with his girlfriend that night. My sister and I stopped by dad’s on the way home, to find a police car sitting out front speaking to my dad, and my mom at the gas station across the street. ‘Supposedly’ my mom had tried to break in to get financial records and then tried to attack my dad when she realized he was there instead of with us. ‘Supposedly’ my dad then punched her and pushed her down a flight of stairs. April to June was a constant barrage of being lied to from both sides and listening to my parents bad-mouth each other.
On July 12th, 2009, I was headed home from a bonfire at a friend’s house. I was completely sober. Northbound on a north/south highway, there is a hill with an intersection about 100 feet from the crest. I looked down for half a second to put my cell phone in the cup holder. Wrong second to look down. There were two cars stopped at the intersection, going opposite directions, each making left turns. As soon as I saw the car in front of me, I slammed on the brakes. It wasn’t enough. My truck rear ended the car in front of me, which cause the car to spin around and hit the other car in the gas tank. They caught on fire. The car headed southbound had 4 teenagers in it, who all got out okay. The car I struck had a teenage girl driving and her boyfriend. She got out okay. He did not. He was pinned in the backseat and burnt to death. I can only pray that he was knocked out from the impact.
At 20 years old, I was responsible for someone’s death, a someone who was a son, a brother, a boyfriend. I was charged with vehicular homicide as a 3rd degree misdemeanor, which carries a 2 year license suspension, 2 years probation, 200 hours of community service, and 90 days in jail. I was given the maximum sentence.
In October, my dad and his girlfriend announced she was pregnant. I haven’t finished a single credit hour of school since the accident, despite my best efforts to keep going. I work for my dad because I have no way to get to another job. I have a jail sentence hanging over my head as a threat. I am afraid to go places in the town I live in because I don’t want to run into the family of the boy who died and cause them more grief. I was single for more than a year and a half. And you know what?
I love my life. I am happy. I have an amazingly supportive family. My relationship with my dad is better than it has been in 15 years. I am actually pretty good friends with his girlfriend now. I love my baby sister so much. I am in a relationship with a man who knows about the accident and loves me anyway. I am proud of myself, proud of how I have dealt with this traumatic situation that I was given, and that I’ve turned it into something positive.
I talk to young drivers about what can happen if they don’t take driving seriously. And they listen. I appreciate life so much more now than I did. I know it’s easy to be preachy and say “Oh, you just have to find the silver lining, blah blah blah.” Fuck that. A year ago I was at the lowest point I’ve been in my life, but I just kept trucking, because really, what other choice do you have? And things got better. It took time. And they definitely got worse before they got better, but it happened eventually.
My only advice is hang in there. And stay off your fucking phones while you’re driving please.
You will never get a text or call that’s more important than your child’s or your mother’s or your partner’s life.
