Huge Strides for Autism Wandering Awareness
A new medical code takes aim at a behavior that puts kids at risk, parents on high alert http://www.childmind.org/en/posts/articles/2011-7-27-autism-and-wandering-risk-kids-worry-parents
More about what the new wandering diagnostic code will achieve: http://www.ageofautism.com/2011/03/keep-americans-with-autism-safe-from-wandering-related-injuries-and-death.html
Great video discussing the recent efforts to raise awareness about Autism Safety and Wandering:
IAN Project Preliminary Findings on Autism-Related Wandering:
Chasing G: Struggles with Our Runner
What do you call yours?
A Runner. That’s what we always called G. I used to joke that he didn’t learn to walk, he got up to run. “I’m sorry I missed __ (fill in blank),” I’d explain, “I was chasing G.” I considered naming my blog “Chasing G”. It works on many levels. Friends, family, teachers, acquaintances, therapists have all heard me say it countless times. Everyone. Everywhere. Every time.
A particularly awkward friend frequently comments with a smirk, “We all wonder why you aren’t as thin as a toothpick, because you’re always chasing G.” I simply have no words for that. Of course I agree. It must be stress hormone-related weight gain, because I do get plenty of exercise chasing G. I’ve since run from the friendship – wonder why?
Energizer bunny. G’s running was the 1st sign that something was amiss. We have a bit of ADHD in our family history, so we were told to keep an eye on it. But pediatricians, therapists, schools, teachers, friends all brushed aside my concerns with a blanket dismissal, “All toddlers are active.” But everywhere we took him we’d hear, “He’s so busy!” or “How do you keep up with him?” or “I’m glad I’m past that stage”. My neighbor used to “joke” that we needed an invisible fence with an embedded chip to “poke” G when he went out of bounds - like they do for pets. Yikes! I always respond that he’d keep going anyway. He’s that driven. Tunnel G-vision.
Curiosity. In that same vein, I often described to professionals that G’s behavior was that of a puppy discovering new place; running around from object to object, room to room checking out a new territory. But thinking back on that, he oddly never checked out PEOPLE. He’d run towards a dog, a truck, a bird, a leaf, a window, a puppet, a computer, a game, a closed door, an open door, a hallway…but not a person. Big. Red. Flag.
Houdini. G was an escape artist at 2. We installed baby latches on all cabinets in our house when G was about 9 months and crawling around. Before we even finished the project we’d done in 2 other homes for our other toddlers (we were semi-pro in the art), he’d figured out how to open them! We installed deadbolts up high to keep him from escaping, he pulled a stool from the kitchen to unlock it the next day. A local day care had to install alarms on their doors after G kept slipping out of the classroom. The owner dubbed them, “G alarms”, and uses the term with his staff to this day. We installed loud screaming alarms at home, which finally stopped him in his tracks.
Anxiety. Effect on parents/caregivers? I refer to it as being on high alert like a medic. But medic I’m not. I’m emotionally bound with love and devotion to this sweet boy. I have other responsibilities. I never, ever get a break. We worry when we’re not with our wanderers, worry in our sleep. 24/7 on high alert.
Am I alone??? Awareness Frustratingly Absent!
Isolation. Despite reading recently that 92% of autistic people wander, I never came across wandering and elopement as a symptom of autistic behavior in any of my early reading online, articles, books, talks, clinical test forms, etc. I looked, I asked, I threw up my hands. The closest I came to it was “impulsive”, and “seeming not to hear when his name is called”, or “always busy”. Where in all of this literature was this peculiar, dangerous and extremely stressful behavior? I finally learned via Facebook of all places. I read a book by Laura Schumaker, author of A Regular Guy: Growing Up With Autism who described her son’s elopement tendencies. I felt vindicated at last – another mother who understood my terror. It was also on Facebook that I learned of Sheila Medlam’s son Mason who drowned across the street from her home. He was 5 like my G. Then came the big news story of Nadia Bloom, who wandered away and was found after 3 days in a Florida swamp. After these national news stories, more media attention was given to autism elopement. I began to notice an increase in information about wandering, location devices for autism elopement, and other news stories of children who’ve come into danger or died from wandering accidents.
Awareness. I was invited and was instantly moved to take the IAN survey on wandering. I was amazed at the story the survey questions told. Obviously other parents were concerned about the exact behaviors that I was, or the questions wouldn’t be included in this carefully formulated research study. I rejoiced in the fact that I wasn’t alone. That may sound a bit twisted - I certainly don’t wish this upon anyone - but I was truly relieved that I wasn’t dealing with an anomaly. Elopement is a common symptom of autism; but not widely known, documented or discussed. I decided that I needed to help raise awareness in any small way. I answered the survey frankly, with details. The IAN Project survey has helped advocates to get Wandering a diagnostic code for physicians and health care. What a boon! If 1 other parent, doctor or caregiver realizes the dangers, makes the connection, or takes safety measures because of this important milestone, it will make a difference. Let’s help head off tragedy, prevent grief.
Save lives. Save families.
Safety First. For the sake of G, we’ve had to make difficult decisions. Each year we join a group of old friends for a family weekend at a Lake Huron cottage. Because the cottage is across a busy 2 lane highway from the beach, my husband and I take turns alternate years staying home with G for the weekend while the other takes the older 2 children. It tears me up inside to deprive him of an experience which I know he’ll enjoy, a tradition that will shape his childhood as it has my other 2 children. But it’s smartest for his safety and our stress level. Recently we had to pull G out of an inclusion program he’d looked forward to for months because security measures were loose, despite our repeated pleas to staff about G’s safety needs. We’ve made the decision not to go to sensory overload spiking events like amusement parks or water parks with G until/if he stops running. Even when we split up and a parent is 1:1 with G, he takes off and gets lost in an instant. All 5 of us have a difficult time rounding him up when he gets plugged in. We can’t take chances with our kiddos’ safety. Why tempt disaster?
G gives no warnings, he’s just gone without a look backwards. No words, sign language, visual cues, signs or rules stop him. Social stories work logically and with repetition, but evaporate into thin air when he’s intrigued by a distraction.
It takes a village. For months this year I fought vehemently with district administration to employ an aide for G to help him transition into kindergarten. I’m thrilled that the school staff is on board and flexible. G’s kindergarten teacher asked for a book so that she could read up on autism to enable her to understand and work with him better – amazing support! Preparation, guidelines and communication with caregivers is key.
My Autism Wandering Prevention Safety Tips:
Dress all family members in the same color/type clothing or accessory when visiting a crowded venue. Try to think of child’s height/visibility – wear matching flip flops, tie bright yarn on belt loops, carry identical water bottle, etc. This helps the entire family locate each other.
Take a digital photo of child upon arrival at a crowded event. This helps others recall your lost child or to help spot them.
Split up with others, ask for help searching for your child
Prep on the way to an event by going over safety rules: #1 is always tell caregiver if you want to go somewhere (good luck with that)
Give the child a venue map or create a scavenger hunt or shopping list to keep their focus
Try to pair up wanderer with a buddy
Upon arriving at an event, set up a safety spot (sensory free, if possible) to meet if anyone gets lost. When overloaded at school, G often flees to an empty commons area and sits in a window looking outside (see above photo). Running is self preservation, pure and simple instinct. These kids are pretty smart when it comes to knowing what they need and what to avoid. It’s when we get in their way to make them conform that brings on meltdowns. Hence the term, “flight or fight”. Imagine being miserably sick with the stomach flu in a room full of screaming babies – you’d run quick or push your way out!
Label clothing, make sure child knows their name, parent name, address and phone #.
If nonverbal, use id card or id product, such as:
Helpful safety resources:
Additional Information and Help for Autism Wandering and Elopement