Here is the truth; autism does kill – all the time. I read a story at least once a week about someone with autism drowning, being hit by a car, or freezing because they wandered off. Wandering and lack of fear are two incredibly common traits for those with autism.
I’m sure you are wondering what got me fired up on this topic. It has already been covered quite adequately by my friend Lou at Lou’s Land on a post called “A Real Concern.” In some ways this idea is old news to all of us within the autism community. Well, we just had a close call that reminded me of why the phrase “autism doesn’t kill” makes me so incredibly angry.
First let me tell you a story from last August. Zoe was a few weeks old and we were visiting Nate’s mom. Nate and Lexi were playing in the condo swimming pool. They had tons of fun and were just getting out of the pool and getting ready to go. Nate had taken off the life vest Lexi ALWAYS wears when she is near a pool and was drying her off. As Nate was distracted by something his mom said Lexi started inching towards the pool. I saw the inevitable and started walking towards her (thank goodness Zoe was in her car sear). The minute Lexi saw me coming she jumped in the pool. That moment will FOREVER be burned into my memory. The sight of my helpless 3 year old completely under water was terrifying. I jumped in full clothed with my phone in my pocket and holding our digital camera, and pulled her out. Somehow she had held her breath long enough for me to pull her out and didn’t even come up coughing. So I put her down and she happily walked away – like nothing happened. She could have drowned and she had no idea.
This next story is so much more terrifying though. A few Saturdays ago I packed up and left with a group of awesome women on my river trip, leaving Nate with both Lexi and Zoe. Day 1 was all driving and we still had the luxury of phone reception that night so I called Nate to see how things were going. He hesitated to tell me of Lexi’s “field trip” as he called it because he didn’t want to freak me out right before I got on the river. But he told me anyway. Basically, Nate had left the apartment for a few minutes to do laundry (it’s in the unit next to us). In the 5 or less minutes he was gone Lexi disappeared for the first time ever. Up to this point she had never wandered off. He came in the house, didn’t see her, ran around the yard, didn’t see her, ran to the back parking lot, and still didn’t see her. At this point he is just trying to stay calm and went out to our front yard and scanned around the neighborhood. There she was – sitting happily under a tree at the park on the other side of a busy street. Nate ran over there and was greeted by a mom who was hovering near Lexi. “Is she yours” she asked. When Nate said “yes,” she told him that Lexi had almost been hit by a car as she darted across the street to the park. How terrifying is that? Now I get that lots of kids run across the street. The difference is we cannot explain to Lexi why she should never do it again. If anything that first time opened up a world of possibilities making it easier and easier for her to wander in the future. It’s terrifying!
She could have been hit by a car that day. Not once, but twice. The second time she wandered that same day Nate caught her before she left the yard. Even this last Sunday she left the house as we were all sitting in the front room. Obviously she didn’t get very far – but the fact that walking out is so easy for her is absolutely terrifying! We are now installing new locks on our door and thinking about getting an alarm that goes off every time the door opens.
So my whole point is autism does kill – anyone who says the contrary has no idea what they are talking about. I am absolutely terrified that Lexi might wander away and be hit by a car or drown or something else awful will happen to her. This fear is something so many of us autism parents live with every day. It’s just as scary, and just as real, as the fear of a child dying of cancer or AIDS. Autism does kill and unfortunately it happens all too often.