As Americans mark Autism Awareness Month this April, Montreal area police are ready to call off the search for a three year-old autistic boy. Parents and advocates can only hope awareness raised by this tragic story will lead to measures that will keep our loved ones safer.
The Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration points to research that shows the death rate among autistic people is twice that of the general population. Many wandering incidents lead to drowning in a nearby pool or body of water. While there is no official mechanism to track wandering among people with an autism spectrum disorder, the National Autism Association (NAA) blames autism elopement for eight deaths a year among American children aged 3 to 8.
Supervision Not Enough
Early diagnosis and intervention are critical for children with autism. Unfortunately, once an autistic child is diagnosed the battle is only beginning. According to AWAARE, “pediatricians are largely unaware of autism-related wandering incidents and how they can be prevented.” As Charles Lafortune of Giant Steps says, parents generally learn to cope with autism on their own, mainly “by trial and error.”
Families face experts and loved ones who cannot fathom the difficulty of parenting an autistic child. And if a child goes missing, the belief that adult supervision of an autistic child is easy fuels public opinion that parents must be negligent. Lafortune describes the supervision of a child with autism as “extreme, total, round the clock.” An autistic person is not a baby who can be kept safe with a playpen and a few locks. People with autism can be very intelligent and will plan their escape, waiting for an adult to turn away for just a brief moment in order to run.
Living with an autistic person who wanders is not the same as caring for them in a school or daycare setting. If anything, it is like living in a war zone. Relaxing for even a moment is inviting disaster. Supervision is essential, but it is simply not enough to meet the needs of children and adults who have autism elopement.
Little Adam Benhamma was only diagnosed a month before he disappeared. When his family called 911 to report him missing they told police the boy was deaf and autistic, and that he could not speak. Emergency personnel took this to mean the boy was completely mute, but the family now says he is able to make some sounds.
The confusion over Adam’s actual abilities and disabilities highlights the importance of planning for elopement before an autistic child disappears. The best possible scenario is one in which parents meet with first responders and their child’s support staff, much as they would attend an IEP meeting at school.
But police are often unwilling to meet with families, as they were when our son began running away from home and school around age 4. When we asked for a meeting they refused, preferring instead to send Youth Protection to our home. This scenario is common enough that many parents of children with autism are afraid to call 911 when their children go missing.
Wandering as a Diagnosis
There is a movement that supports the creation of a new diagnosis that would recognize autism with wandering. This diagnosis might be what is needed to focus the attention of autism experts, support staff and first responders to the extreme conditions experienced by the families of people with autism. Like the diagnosis of brittle bone disease, it may also help to prevent unfounded accusations against parents.