April 15, 2015

Managing ASD Wandering Tendencies on all Fronts…

By Lori McIlwain, National Autism Association

For parents of children with an Autism Spectrum Disorder (ASD) who are prone to wandering or bolting away, it can feel like an overwhelming challenge to keep them safe in any setting. Over the last three years, roughly 13% of ASD wandering incidents happened from a school or school-related environment according to the National Autism Association (NAA). Other settings can be just as frightening. Trips to the store, a relative’s home, or vacation settings can create opportunities for escape, leaving parents hesitant to leave the home.
While it’s very possible that a wandering incident can occur outside of the home, the right steps can help reduce the risk.

Simply discussing the issue of wandering with your child’s school holds extraordinarily value. If your child has a history of wandering or bolting, ask his or her school for a functional behavioral assessment (FBA). Based on its findings, a behavioral intervention plan (BIP) should be developed and used consistently between home and school. Here are other tips to consider:
  • For a child who demonstrates bolting behaviors due to fear or stress, ask the school to assign a “safe place” in the building your child can go to. The goal is to keep your child in the building and easily located.
  • For extreme wandering cases, petition the school to assign a 1:1 aide for your child. Ask a doctor to write a note on your child’s behalf if necessary. (A medical code is established for children with autism who wander. Talk to your child’s doctor about the medical code v40.31.)
  • Make sure the school has all emergency response protocols up to date. Ask for a copy of these protocols.
  • Don't forget buses and field trips: any safety plan at school should carry over into bus/transportation and field trip settings.
  • Transitions to different classrooms can be a time of high risk. Ask the school to ensure your child is never left unattended. We recommend a “hands off, eyes on” approach.
  • Make sure the school knows that if your child is ever missing, they should immediately call 911 and search areas of highest threat first, such as water and busy roads. Also ask in writing that you be notified of any wandering incident, large or small. 
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Lori McIlwain has a 15-year-old son with autism and is co-founder and board chair of the National Autism Association (NAA). In 2007, Lori began advocating for federal resources that would reduce and eliminate emotional trauma, injuries and deaths associated with autism-related wandering/elopement. She has also advocated for federal laws that would eliminate dangerous restraint and seclusion practices in public and private schools. Through NAA, she has launched multiple safety initiatives and direct-assistance programs.

April 13, 2015

'You Don't Outgrow Autism': What Happens When Help Ends at 21?


Nickolas Kubicsko and his family were about to take their first family vacation in seven years.

There was no question where they'd go: The Happiest Place on Earth. Twenty years old at the time, two years ago, Nick had been obsessed with Disney movies since he was a little guy.

WATCH: The full Dateline report on young adults with autism