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A Lost Cause – No Exit

This is a guest post by Lori McIlwain who has a son with autism.

If I could have made Connor a miniature replica of every highway exit sign in the state of North Carolina, I would have. He knows them all by heart. Realistically, I could only create a few particular favorites that he often begged to see. Driving him to those exits down Interstate 40 became the equivalent of going out for ice cream, and our days were filled with drawing one exit sign after another as he nudged green crayons into our hands asking, “Exit 93A?” “Exit 289?” “Exit 2B?” Arts and crafts were never my thing, but for two weeks leading up to his 8th birthday, I committed to a daily ritual of wood glue, green paint and rectangular slats. I remember the day he opened them — his smile grew wide and steady as they peeked out from under the tissue paper. To him, those exit signs were the best gift ever. To us, a way to keep him safe.

It wasn’t long before when I received a call from a woman explaining that our seven-year-old son was sitting in a police cruiser after being found by a random stranger. Connor had wandered from the school grounds, and although no one could say how long he was gone, it was clear he made his way through some woods and onto a side street leading to a four-lane road. A local man was on his way to the post office when he spotted him. He put Connor in his car and called the police.

Connor told the officer he was “going on an adventure to touch his favorite exit sign.” He had wandered multiple times before from multiple schools, but this was the worst yet. Although we had become the squeaky-wheel parents that insisted on close supervision and tightened security, it obviously wasn’t enough.

The replicas did what we hoped they would. In fact, the more we fueled his obsession, the more it became old hat. Even so, we weren’t about to let our guard down. After that incident, we were able to enroll Connor into our county’s Project Lifesaver program, a tracking system typically facilitated by a local sheriff’s office. We also fought for a 1:1 aide and became even more “squeaky” about school security breaches, such as fence gaps and open gates. We looked at it as a wakeup call and felt lucky to have the resources we needed.

Around that same time, another little boy went missing in Michigan. Same age. Same diagnosis. He was found dead.

I’ve never had to know what it’s like to have my child still missing after the sun goes down, or hear unbearable news that my child is gone. I don’t believe it’s right that some children have access to safety resources, and others not. To me, it wasn’t okay that an AMBER Alert could have helped that young boy, but was never issued because he wasn’t abducted. Our children are dying alone, many without a voice to call for help. Every child should be given the resources to stay alive.

There will come a day when we won’t be here to make sure Connor’s safe. Should he ever have to rely on someone else after we’re gone, my hope is that person, and the general public, has a better understanding of this issue. Until that time, we’ll continue to help Connor learn ways to keep himself safe. Who knows, maybe one day he’ll find some dusty miniature signs in the attic and ask, “Mom, what in the world are these?” “Oh, just some old exit strategy.”

A new website, AWAARE.org, has been developed to address autism-related wandering. AWAARE is a collaborative project of AutismOne, Autism Speaks, Doug Flutie Jr. Foundation,
 HollyRod Foundation, National Autism Association and Talk About Curing Autism.


  1. kim griffiths
    August 7, 2010 at 6:55 pm

    That is my fear what will happen if and when anything happens to me,I would not leave him to the wolves of this world,they say they understand,but they dont!!!! find me on fb UK kim griffiths

  2. Alison
    August 7, 2010 at 6:59 pm

    I could have written this story. My son, Alex, was lost 3 times at school and once from a church during kids church. My heart started jumping as I read this story. It is such a scary situation. We home-schooled our son for 2 years because of this. Alex is diagnosed as PDD. He is high functioning autistic. While he sometimes acts like other teens his age, he has his lost moments where he will chase a balloon, bug,etc. I’m glad other parents are telling their stories and that more people are becoming aware of the problem. Thank you!

  3. Jo Spargo
    August 7, 2010 at 8:37 pm

    i am so impressed by how you can describe this – in a way that makes people listen and not turn off. My son is 5, and so possibly could follow in your child’s footsteps. I am grateful always when I read posts by you moms who have gone before. Thank you for sharing!!!

  4. August 7, 2010 at 8:46 pm

    Glad your boy is safe. When my now 22 year old was eight, we spent one whole summer taking rides on streets he had never seen before. He was fascinated by street names and signs. Mid-summer, I limited him to three new streets per car trip, or we would have never left the car. Had we lived closer to the interstate, I could totally see him following the green signs on his own. He’s over it now, but is very, very good at directions!

  5. August 7, 2010 at 10:14 pm

    LifePROTEKT is offering a back to school special on all wandering prevention and located based GPS devices. If you call 800 939 3952 and use PROMO “SPEAKS” you will get the following:

    $10.00 off Location Based GPS device
    One Month Free Service Subscription
    Free Shipping
    Portion of Proceeds goes back to Autism Speaks!

    *Subject to specific products and subscriptions.

    CALL 800 939 3952 for further information and go to: http://www.lifeprotekt.com/category/products-that-protect/

  6. LA
    August 7, 2010 at 10:33 pm

    I am an older single mother with a son on the spectrum that wanders. When he was barely age two we had a section of the zoo close down because of him and by age four he wandered as far as two miles while I was taking a quick shower. It is a terrifying feeling to know that your son is gone and have no idea where to being looking. For years I have rented tiny apartments in places with big yards or places that are contained on one side by a barrier of some sort. Although schools frown upon it, as soon as he started school I made him carry a cell phone and keep it turned on. It is part of his daily routine – get dressed, put the phone in your pocket. Cell phones are amazing these days you can block calls during school hours and block them from anyone not on a contact list. That way it never rings in class and you can still have it on. You can also use a phone as a GPS. More than once, that GPS has been worth its weight in gold many times over. With my phone, I can track my son’s phone anywhere he in the country as long as it is turned on. It even shows me where he is via a little map. The minute I or someone suspects he is wandering, I track him. This has worked at school, large stores, at the sitters and even when he wandered while visiting grandparents a thousand miles away. These days, at age 11, he is becoming aware of his wandering. The minute he finds himself “lost”, he calls me and we solve the problem. It may not be the best system, but for us it has worked for us time and time again. Since we have used the phone tracking method, he has been located no further than a half mile away. Oh, btw, because the phone is a safety tool and needed to assist because of his wandering, it CAN be written into an IEP at school. That way no stick-to-the-no-phone rule over administrator can take it away.

  7. August 7, 2010 at 10:59 pm

    What a touching and scary story. When my son (Aspie) was in first grade, he too wandered out of school. I was lucky. I’d told my little rule follower that if he got outside and I wasn’t there, he was to sit on the bench by the front door and wait for me. He hadn’t been diagnosed yet. I just thought I was giving him a rule for what happens when school is over for the day. Somehow there was a misunderstanding in the middle of the day and my son grabbed his backpack and walked out the front door. No one told me this had happened. No one from the school that is. When we got home that day he said, “Mommy I went outside and waited and waited and you didn’t come. So a lady took me back to class.” My heart lurched. What if it hadn’t been some nice lady? What if he hadn’t stayed on the bench? It still scares me 4 years later. I don’t understand how any child, autistic or not can just walk out the front door. I just don’t get it.

  8. August 7, 2010 at 11:22 pm

    Nadia Bloom wears a LifePROTEKT Lok8u device. See this link:


  9. Denise Kauyedauty
    August 8, 2010 at 8:35 am

    I know what you’re going through.My son Kyle wandered out of our house twice when he was around 4. We were so lucky both times to have had caring people find him in just a few minutes, safe and sound.After that , I put all kinds of bells on the door, so if anyone opens it, you WILL hear it! I told all his teachers when he first started school( he’s 9 now ) I put it in his school papers, that he might wander, and they’ve always taken my concerns seriously.Great teachers’, great school, to this day! Happy to say even the polce were on it right away. , even tho’ I had to explain alot about his autism. Don’t think about’what if?’You’ll just drive yourself crazy, and you can put that energy more towards Connor, now.

  10. August 8, 2010 at 1:39 pm

    thank you for the cell phone idea.I have been wondering how in the world i would find my daughter Willow if she desides to go for a walk one day. She is four now but has been wondering since she started walking. We have put dead bolts at the top of our doors an never leave her unattended if a window is open, but with her starting school (which is a very special school designed for children on the specturm) i’m not always gonna be there for her an that scares me to death(yes i know i’m an over protective mother lol) I will be talking to the school to see if that would be an option or not cause it is alot cheaper then the life protect

  11. Angela Moore
    August 9, 2010 at 6:32 am

    Thank you for sharing your story. This happens all too often. Teachers and therapists using a phone or other distraction lose sight of our children. I encourage all parents to register your children with the local police and fire departments as well as complete a 911 form. With a picture and additional information, the search may be shortened with a positive outcome.

    Programs like ALEC should be encouraged in your community.

  12. Katie wright
    August 9, 2010 at 9:26 am

    Lori thank you so much! You were the first to bring attention to the need to prevent these horrible tragedies. I am so grateful go AWARE.

  13. August 9, 2010 at 9:55 am

    Thank you so much for sharing your story! I too have a 4 year old who wanders away and has no fear of danger. He has been doing this since he was 2 and to add to the fun and games clothing is optional! (I am sure there are many of you who understand and are members of the stripping and fleeing autistic child club) My worst fear is to lose my child… AWARENESS, ACCEPTANCE and UNDERSTANDING is what we NEED for our children, families and ASD community. THANK YOU AGAIN!
    MAXarT ~ autism is beautiful!

  14. Erin Kuhlman
    August 9, 2010 at 11:11 am

    I know just how you feel: There’s nothing worse than discovering your child is gone. About six months ago, my three-year-old daughter with autism figured out how to unlock three of the four doors in our house. One morning, I walked into the laundry room leaving Jeannie playing with her toys, and when I returned, I saw the back door standing open–she was outside in the snow! Up until that time, I had no idea my uncoordinated toddler could turn a lock much less a door handle. And, because of her lack of fear, she simply decided to take advantage of her new-found freedom. It was then an there that I decided to put alarms on every door and to call my county’s Project Lifesavver. But even now that my house seems escape-proof, I will never leave Jean alone even if she is only one room away!

  15. August 9, 2010 at 8:32 pm

    Thank you for this heart-rending story. I am raising my autistic grandson, so I can relate.

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