Susan's Blog

Monday, May 20, 2013

What is Missing in the Autism Picture

Around 14 years ago we were invited to a holiday dinner with the family of one of Max’s friends. I think I had just had Benj, because I had that new baby feeling of not quite remembering everything else I was supposed to remember. This was a gathering of several families; I remember that the hosts had a very long table. The dining room and all the front rooms had large Victorian-style low windows that faced the sunny street. The kitchen was right off the dining room and had a door to the back yard, which wasn’t a yard at all because this was a first floor apartment in a row of attached brick buildings. The apartment building was on a side street to a busier street.

We were about to sit down at the table when in through the dining room window climbed Nat.  I looked up at him and felt like I’d swallowed a wet frog. My gut knew before my brain what had happened. Somehow Nat had escaped from the apartment and we had not even realized it. My guess was that he’d gone through that kitchen back door, because we would have seen him if he’d gone out the front. Do I remember faintly, darkly, a back door slamming, or is that my mind filling in an old obscure memory?

Everyone must have noticed, but I don’t remember us all talking about it then. I think we even stayed for the dinner, rather than going home and sitting around in shock. What I do remember is that awful feeling of being in two places at once: the Me at the dinner party, trying to participate, smile, and be a good guest; and the Me stuck in the previous hour, tasting the terrible thoughts, “what if…?” Ned and I tried piecing it together later on. Nat must have opened the back door of the kitchen and perhaps it closed on him and locked him out. Even back then he was not an “eloper.” (I don’t like to use the term “elope” because that has the exciting, romantic connotation of people running away together to get married. No, there is nothing exciting or romantic about the autistic children who disappear from their homes, attracted to a nearby body of water or some other fixation.) This was one terrible trait common in autism that we did not have to contend with. Except that night. Still I think of it as innocent, unintentional. As if all those other autistic children who run away mean to do it. As if they are not victims of impulse and circumstance, too?

We imagined that Nat, being presented with the locked door, had made his way through the backyard, and all the way around the backs of all those connected buildings, until he found himself on the street. He may have even gone the opposite direction and wandered onto the busier street. Yet he made his way back to the front of the apartment, and found the way in through the window. I don’t know what was in his mind, whether he panicked or simply made his way back to us, or both. He was not upset when he climbed back into that dining room. He was about 10, and this was his most impulsive age so far. To this day we both marvel and shudder at this memory, because of what did happen and because of what could have happened.

The families of Mikeala Lynch and Owen Black were not lucky. Their children wandered and died because of it. There is so little we know about why these children run away . I have no words of wisdom here; I guess we are still in the phase of trying to raise awareness via Sunday Stillwell’s blog, in the hope that someday soon there will be an answer, a way to protect our children from fatal impulses. Today we can only grieve.


Our son was brought home twice by a neighbor before we went to full lockdown. He was a wanderer.

Our road was used by logging trucks and there was a creek nearby. It’s so very scary. I’m so sad for these children who have wandered and been lost. So sad.

— added by Janet bowser on Monday, May 20, 2013 at 7:48 am

I’m having trouble with the fight over having a code for elopement. Why does anyone care?? Why the fight?? Last summer, my kid went past his father in the kitchen, past me in the office, got his hat and shoes on, and managed to get out the door and well down the road before the neighbor found him. He refused to get in the truck with the neighbor but he came and got us – we thought our son was upstairs – and our son headed home. He knew he was in the wrong. I met him with the van at the corner.

We think he decided to go to the park before the time I told him we would go.

If that one does not wish to be heard… you won’t. I have him registered with the OPP so his info comes up on the computer should they ever get a call about him being missing.

Things is, for the most part IMO they are not running away, nor are they lost. They see something, remember something and off they go to check it out.

It’s a holiday weekend here, and we were stopped at a RIDE check yesterday. I introduced him to the cop. Just in case.

It happens all to regularly… so why the fight not to have it noted that it does????

— added by farmwifetwo on Monday, May 20, 2013 at 10:22 am

My sons have both wandered and been lost… one on a school field trip at the Houston Zoo, and the other in Barnes and Noble, and then at a “Family Fun Fair”. the feeling of starting out looking with no idea where to go is the most horrible feeling there is. Neither twin has any understanding of danger, traffic or ability to respond to his own name. I wish more towns would join programs like LoJack Safety Net, so parents of kids like ours could get a little more sleep, and stories like Mikaela’s could be prevented.

— added by Alice on Monday, May 20, 2013 at 10:57 am

I have just been sick to my stomach after reading about those sweet children. My boys have both wandered away – one time at the beach. Not knowing where they were was the most horrific feeling. My thoughts and prayers are with those families. I always apologize to family and friends when we are at the pool/park/church/etc. that I can’t really give them my undivided attention because I need to keep an eye on my boys. I feel like I am living life as like a life guard – always having to keep an eye out for them.

— added by Suzette on Monday, May 20, 2013 at 5:34 pm

This one keeps me awake at night sleeping with one eye open which makes it harder to keep watch during the day. Mine has always been a wanderer. I’ve broken off toenails chasing him outside. I have an alarm system at home to keep him contained (he’s 5), but what I’d really like to do is implant a GPS chip or something but don’t know how to go about it or how much it would cost.

— added by Julie on Tuesday, May 28, 2013 at 11:59 am