In Fugue: A Parent's Nightmare
Like many children with autism, my son is "in fugue." I hear organ music in my head, every time someone uses that expression. I see my son running farther and farther away from me, his feet moving even faster than the pace set by all those sixteenth notes.
Having an autistic child who is at risk for running is like sinking in quicksand. Everything you can do seems too slow and awkward. You can't lock him up, but some days it seems that nothing short of physical restraints will keep him safe.
The media tells us that Adam's father had been watching his son and an older sister play outside, and had just stepped into the house for a minute when the boy went missing. If you are tempted to judge the father for stepping away, let me tell you that supervising an autistic child is a round the clock job that doesn't even allow for coffee or bathroom breaks.
Many parents of autistic children quit full time jobs to look after their kids. Those who have the means will hire caregivers. But even when paid staff are watching these kids, they can and do get away. Giant Steps spokesperson Charles Lafortune, father to an autistic child himself, understands this. "[T]here is no condemnation. There's really just empathy," says Lafortune in response to Adam's disappearance.
Help for People at Risk
Training programs do exist to teach first responders about the unique needs of autistic people, but only in some areas. When we asked our local police if we could meet with them to discuss our son's special needs and prepare an emergency response plan, our request was dismissed out of hand. Our experience is not an isolated one.
An even better option is a program like Project Lifesaver or SafetyNet, that provides both first responder training and personal tracking devices for those who wander. According to Project Lifesaver International over 2,000 searches have been conducted in the U.S., Canada and Australia over 11 years, with no serious injuries or fatalities reported.
Prevention is a Significant Need
In an article aimed at law enforcement officers, Ellen Gervais of the National Crime Prevention Services lists wandering as a major concern for people with autism. "Many individuals with autism have a fascination with water," she says."[D]rowning is the leading cause of death among people with this disorder."
Wandering has also led to death by freezing, as in the case of a 7 year-old Cape Breton boy with autism who wandered from home. Elderly people with dementia are similarly at risk for wandering, and several high profile cases have ended in death due to hypothermia. The most recent incident, involving a man who wandered from a supervised senior's residence has Montreal police reconsidering the use of personal tracking devices for Alzheimer's patients. We can only hope this will lead to a broader program that serves all people at risk for wandering
Published by Kyla Matton
Kyla Matton has been writing ever since she could hold a pen in her hand. Her first piece was published almost 30 years ago, and since then she has written for a number of print and online publications. Her... View profile
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3 Comments
Post a CommentVery sad :o( all my prayers are going out
So sad, definitely praying for the little boy's safe return and for the family. cheers
My thoughts are with that boy and his family. Thank you for such an honest article!