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.
I have to say that all of that is true. I hate to use the word depression (I think most people do), but things have been rough since my daughter died. I’ve scraped for words to express the isolation, pain, persistent sadness, discouragement, lethargy, roller coaster days, rage, sullenness, futility… but every time those words fall short.
Over the last few years, I’ve learned a lot of things not to do, and a few things to try.
Most important is that a quick fix is a myth. So often I’ve woken up feeling OK, moved through the day’s activities relatively well, actually enjoyed some of the day’s moments, and thought to myself, “Hurray! I’m better!” Only I woke up the next day back in the swamp, feeling worse than before because I was wrong. I hadn’t actually left it behind.
Here are a few ways that have helped me, along with a few things I recommend avoiding.
If you are struggling with depression:
1. If you are a spiritual person, pray and tell God about how you feel and ask for help. Don’t shut God off just because you don’t feel God’s presence anymore. Feelings are fickle things, affected by lack of sleep, poor eating habits, hormones, illness, grief, and more.
I found that praying in the shower was a good place because
1) I could usually count on not being interrupted by my children, and
2) if I cried my heart out, the water washed my tears and snot away (I’m not a pretty cryer.)
2. Talk yourself through the day. I don’t mean talk out loud to yourself – that’s the fast-lane to crazytown. What I mean is this: if you catch yourself possibly over-reacting or taking the actions or words of another person personally, try to stop long enough to remind yourself that you are predisposed to assume the worst right now. Tell yourself, “I need to take my own emotional/mental/physical state into account when I’m reading other people and cut everyone, including this jerkwad, some slack.”
When I remind myself of this, I’m more likely to step back and wait to see if what I am jumping to conclusions and being paranoid (and usually I am). This helps preserve those relationships, and heaven knows we need as many healthy relationships as we can get.
3. Talk to someone about your struggle. Be selective. Keep your circle small, at least at first. Look for someone who is strong because they have struggled through some hard things themselves (not because he or she is a know-it-all). Find someone you can trust. Don’t talk to that girl who starts every story with, “Don’t tell anyone else, but so-and-so told me …” If they tell stories about other people, don’t give them any dirt on you. The right person will listen well, try to understand you, and give realistic counsel. They will be flexible but also persistent, drawing you out even when you withdraw or hide what’s inside.
4. Remain engaged with your family and friends. Make yourself go to birthday parties, cook-outs, ball games… whatever it is that you and your friends and family do together. Go even when every cell in your body wants to hole up in bed. We need people, and you have never experienced encouragement quite like spending time with people who care about you and who love to have fun.
I am so thankful for my husband and friends who have dragged me out of the house. No matter how many times it happens, I’m always surprised at how much better I feel when I go, even when it’s The Last Thing I want to do that day.
5. Give yourself time. This one has been hard for me. I want to be done with this depression. I want to move on, move forward, leave it behind, get better. I’m tired of dragging it around every day. But my counsellor keeps reminding me that there is no timetable on grieving. And if I try to stuff it all away and hide it, that actually makes the whole process longer. I need to feel those feelings and work through my grief, not run away from it.
6. Go see your doctor. Ask him or her to check for any physical problems and talk about how you are doing. It is very common for an illness or untreated condition to affect every part of you, including your energy level and outlook on life in general. They will collect some labs to look for things like low iron, an out-of-whack thyroid, or abnormally high white cell count (indicates that your body is fighting an infection somewhere). The doctor should be able to work with you to identify ways for you to improve your physical health, and present some options for improving your emotional and mental health.
7. Do your homework before trying supplements and/or prescription medications. Talk with your doctor about this. They will help you select the best things to try and often have non-prescription options as well. Taking a pill, whether it is an antidepressant or an herbal remedy, is not going to make you happy. These treatments are designed to give enough of a boost to do the hard work of recovery.
Be sure to ask your doctor and pharmacy about how various things interact. Tell them everything you are taking, including herbals and home remedies, because some things are very dangerous when combined. And if you think you need to change something because it isn’t working, don’t just stop cold-turkey! Call your doctor or pharmacist to see if you need to wean yourself off or if it is safe to just stop.
The best advice I was given about trying meds? Try one thing at a time, and give it at least a month before changing anything. Otherwise you won’t know what helped and what didn’t.
8. Build in some cushion. During the worst of my depression, I realized that my weeks were so tightly-scheduled that I had no slack at all for bad days. You know the kind: it’s all you can do to get the kids fed, dressed, and to school, and when you finish that, you collapse. Forget work, laundry, paying bills, washing dishes, cleaning house, grocery shopping. I got radical, backing out of commitments, canceling activities, and taking a leave of absence from work to build in some slack. It gave me the time I needed to rest and recover.
I hope these tips are helpful. I offer them up as ideas picked up along my own struggle in hopes that they encourage you to keep going, keep trying, and most importantly, get help.
It was a beautiful Memorial Day Weekend a few years ago. I had gone with a good friend to the Indianapolis 500. I was very recently divorced and my son, age 8, was with his dad at an amusement park fairly close to our house. I had just returned to the area when my ex-husband called with a pretty horrifying story. His normally tough-as-nails mother had called him, hysterical, saying something about a pool, but he couldn’t make out anything else she was saying. He was on his way back to town, but in the meantime asked me to look for his mom.
So, I did. I think I knew all along what I would find. I knew my brother and sister-in-law were having a pool installed for my niece and nephew, ages 5 and 8. I stopped at a couple of places where I knew they hung out with no luck, so I headed for the hospital.
I went to the ER desk and told them who I was looking for. Just the last name, mind you. Immediately, the front desk person said I could come in the back. I didn’t know that meant really bad news. I said, “No, I can wait out here, no problem,” but she insisted. Into the back I went, and immediately I was confused. There was my mother-in-law, surprisingly calm, or so it seemed. I went to her, and she said it was my niece, it had been the pool where the football cookout had been held, my niece had been missed but there were too many toys in the pool to see her at the bottom.
A lot of the aftermath is a blur now. I went to my brother and sister-in-law, who were holding my niece’s body. She looked perfect and beautiful, but blue. I remember my sister-in-law looking at her almost reverently. I remember sitting on the curb outside the ER, waiting for my ex-husband to get there so I could tell him. I remember my son’s horrified face as he saw her as it sunk in that he would never argue with her again over who got the middle part of the back seat. And I remember the feeling of absolute hopelessness that I couldn’t protect him from that, or from the other ugly things in life.
That night, something broke inside me. I went to bed that night knowing things would not be better in the morning. My sister-in-law’s wails echoing in my ears.
It’s been years now. My sister and brother-in-law are doing as well as I think anyone could and I was diagnosed with PTSD. I thought I had a good handle on it, but I got a comment from someone that brought it all back. This person told me she hoped someone in my family, like my child, got sick so I could understand why she missed a ton of work.
I was 35 weeks pregnant when I found out our daughter no longer had a heartbeat. I gave birth to her sleeping 5 days later.
All my husband and I wanted was to be parents. It took a few years to conceive Leia, but once we did it was bliss. There was a lot of heartburn, and morning sickness but I didn’t care. I loved being pregnant. Loved feeling her move inside of me, and kicking.
We threw ourselves into preparing for her arrival, and had her room all ready. My nice pink new suitcase all packed, the new diaper bag all ready to go, the car seat safely installed in the car.
What we couldn’t do was prepare ourselves for her not coming home. For her dying.
Losing Leia was the hardest thing I’ve ever had to go through. I had been writing letters to her for 6 months in utero. I had no idea how I could stop writing to my baby girl, so I never did.
It’s been almost 7 months since we said hello and goodbye to our daughter. I am currently expecting our rainbow baby but we will never get over losing Leia.
First, people are afraid of what to say, and often say nothing. This is a mistake. Many people are afraid to bring up the deceased child, fearing it will open wounds and raw feelings. But in my opinion the hardest thing is when people don’t talk about Maddie. It feels like she was never here, and this is what is heartbreaking. It is nice when people say, “I thought of Maddie today,” of “I saw a kid in a dress like the one Maddie wore at whatever today.” Or “I miss Maddie.” These things help, not hurt. Make us feel she is not forgotten. Sending a keepsake with the child’s photo or name, things that help her be tangibly remembered are nice. We have received AMAZING things and we cherish everything.
Six years ago, one of my friends lost her father. I was living across the country from her, and I was terrified. I felt guilty that I had my dad and she didn’t. So I didn’t say anything, and I ruined our friendship for a while. I am very lucky she gave me another chance. She has been there for me since Maddie passed away. I have horrible regret about the whole thing – all I had to do was call her and say, “I’m so sorry.”
Religion is a potentially explosive way to comfort. Unless you absolutely know 100% percent the person will be comforted by mentions of faith, don’t go there. Religion is a very complicated thing in the wake of a child’s death, and they may be angry at God or confused as to how to incorporate the death of a child into the religion that they have known to have their best interests in mind. Even someone you know to be intensely religious may be having a crisis of faith in the wake of a child’s death, and could be angered/saddened by mention of religion. Especially stay away from, “God wanted her more than you,” or “God needed her more,” etc.
I don’t care if it is the all powerful creator of the universe, you don’t tell any Mama that anyone wants her baby more than she does.
So many people hate seeing their loved one in such pain and want to fix it. Consequentially, they start talking about how you have to move on, that you will see them again, the child is with God, it will get better in time, etc. All things they think will “fix it.” Don’t try to do this. Follow the lead of the parents. Discuss what they want…if they go to those places you can discuss those things, but don’t try to steer it there. Sometimes I want to talk about Maddie and the unfairness of it all, and other times I want to hear funny stories or talk about reality TV.
Don’t be afraid to show emotion. Many people feel they have to be strong for their friends, that they can’t cry or show emotion. I don’t think that is true. You can be strong AND be emotional. If tears come, don’t fight them. This shows your friends that you, too, are crushed and sad and lost.
Address the horror. People often worry about addressing how awful the situation is, but the parents want to hear that people get the hell they are in. The parents feel alone when they don’t think people understand how awful this is. Saying things like, “This is the worst thing. I am so sorry and sad that it had to happen to you and your child,” helps.
Food is very helpful. The last thing you want to do when mourning is worry about eating. There are always people around after a death, and the last thing you want to think about is feeding them. Mike and I never would have eaten if food hadn’t been sent to us. A gift of food also tells the parents they are loved.
Say or express something you never have before. If you have never told the person that you love them, come right out and tell them that you love them. If you’ve never held their hand, hold their hand. Give hugs. These expressions mean a lot.
Finally, my biggest advice is to not be afraid to take initiative. We often say, “let me know what I can do,” in a situation like this. Well, I can tell you that Mike and I had no idea what we needed. We were so lucky that we had friends and family rally together and just take care of things. A few came to town to help out. One friend organized food, another cleaned my house, two bought the clothes Mike and I wore to the funeral, one put together Maddie’s slide show, a few organized the reception after her service. I could go on and on. I didn’t have to worry about anything because I knew my friends and family would handle it.
Be there for your friends. Call, email, text. Tell them they don’t have to respond. Let them know you are thinking of them, and their child, all the time. Don’t drop away after the funeral – that’s when they’ll need you the most. Be the kind of friend that you would want to have.
The creation of human life is one of the most complex and shockingly beautiful things that our bodies are designed to do. The microanatomy that goes into this task is so astonishingly complicated that it’s a miracle any of us walk around at all.
And yet, most of us do. Most…but not all.
When a baby dies, we are fragmented. Shattered, we must pick up the pieces and put them back together as we pay tribute to our children, our tables forever missing one, our families incomplete, our treasures in heaven, our babies alive only in our hearts. It is through our stories that they live forever. These children were here and they mattered.
They were loved.
They are loved.
If you’d like to add your baby’s name to our Wall of Remembrance, please fill this out so we can properly remember your lost little one.
It all started out so happy and joyful, knowing I was pregnant again – my third child. No words could express my joy.
Five months into my pregnancy, I had an abnormal blood test. The doctor immediately sent me to see the gynaecologist. That is when all my happiness turned into a shattered dream.
The gynaecologist advised an amniocentesis. My husband and I agreed to take the test right away, but we had to wait two weeks for the results. It was agony. I couldn’t sleep at night. I don’t think anyone can worry more than a mother waiting to find out about her unborn child’s health condition.
When the test resuts came in, it was positive.
My unborn son had Trisomy 18.
I was devastated. I didn’t know where to turn or what to do. Being religious people, my husband and I decided not to terminate the pregnancy. We knew God knows best, so we left it all in His hands. I continued my pregnancy, worrying and praying the entire time. My gynaecologist didn’t support our decision. She repeatedly told us that babies with Trisomy 18 don’t survive. Thankfully, I had a very surportive husband and an understanding family.
Day to day, my bond grew stronger with my baby. With every check-up, he grew and continued to gain weight. Through it all, we kept praying. At 35weeks, my baby’s heart stopped beating, and I was taken for an emergency c-section.
When I met my son for the first time, he was so beautiful. It seemed like nothing was wrong with him. Everything looked perfect.
We laid our son to rest on the 11th of September, 2015.
I’m glad I didn’t give up and terminate the pregnancy. He was a total blessing in my life.
