New Group Focuses on Autism and Wandering Risk

While all children may wander off from their parents at some point, children with autism seem to do it more than their peers. Wandering is not just limited to children on the autism spectrum but it is also a risk for individuals of all ages. Let’s take it a step further, wandering among individuals with autism isn’t limited to those with more severe impairments but it can happen across the entire spectrum – from classical autism to individuals with Asperger’s Syndrome. Wandering is a distinct risk and a new organization has been founded to focus on autism and wandering – Autism Wandering Awareness Alerts Response Education.

Both of my children are prone to wander and this is listed on the risk assessment form that we have filled out with both the state’s Division of Developmental Disabilities as well as with our provider agency. Each of my children wears a medical identification bracelet just in case they wander off and are found by someone else. We live in the desert and my father is a member of the local search and rescue organization and he’s had to search for children with autism that are lost in the desert. He’s helped provide my children with some basic survival skills but what he knows about both autism (as a grandfather) and search and rescue has come in handy in these searches and they’ve all ended well.

The following is a press release announcing the Autism Wandering Awareness Alerts Response Education website.

AWAARE Formed to Prevent Wandering-Related Deaths in Autism Community
Six National Autism Groups Join Forces to Address Risks Associated with Wandering from Safe Environments

CARY, N.C., July 7 — A new coalition of six national autism non-profit organizations, Autism Wandering Awareness Alerts Response Education (AWAARE), launched its website today ( in a collaborative effort to prevent wandering-related injuries and deaths, apparently on the rise in the autism community. Coalition member organizations are AutismOne, Autism Speaks, the Doug Flutie Jr. Foundation for Autism, the HollyRod Foundation, the National Autism Association (NAA), and Talk About Curing Autism (TACA.)

While there has been no official tracking of wandering-related incidents involving individuals diagnosed with autism, in an online poll conducted by NAA in 2007, 92% of parent respondents said their children with autism have a tendency to wander away from safe environments. A 2008 study from Denmark found that the mortality rate within the autism population is twice as high as in the general population. In 2001, a California research team attributed elevated death rates among people with autism in large part to drowning. Drowning, prolonged exposure, and other wandering-related factors remain among the top causes of death within the autism population.

“We’re working together to raise awareness of the threats posed to children and adults with autism from wandering, and to provide parents and caregivers with the tools and resources they need to protect their loved ones,” said NAA Board Chair Lori McIlwain. “Saving lives and preventing injuries in the autism community is AWAARE’s mission.”

In addition to educating parents and caregivers, AWAARE is reaching out to first responders to increase their understanding and adjust their response mechanisms for autism elopement. “It is our hope that law enforcement and other first responders will devise strategies for dealing effectively with wandering-related incidents when they occur in their own communities,” said parent and TACA Family Scholarship Manager Moira Giammatteo.

“The AWAARE effort complements the Autism Safety Project ( that Autism Speaks launched last year. We are thrilled to join forces with several autism organizations, so that together we can all provide the much-needed focus on this important initiative,” commented Lisa Goring, National Director of Family Services for Autism Speaks.

AWAARE provides prevention materials including brochures, first responder alert forms, guidance in creating a Family Wandering Alert Plan, and materials for use with school personnel. “I urge anyone caring for someone with autism to access these lifesaving resources and to share them with other parents and caregivers,” said Ms. McIlwain. “Our main goal is to ensure that families won’t experience the devastation that can result from their loved one wandering away from safety.”

About Melissa

Melissa is the mother of two children on the autism spectrum and strives to provide information about all aspects of autism through her blog, The Autism Education Site. Follow Melissa on Twitter. Like me on Facebook.

© Melissa Hincha-Ownby and The Autism Education Site, 2008-2014.