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Developing a parent manual to prevent autism-related wandering

Thanks to support from Autism Speaks, this ATN behavior therapist is developing a manual to help families safeguard children prone to wandering

By child psychologist and behavior analyst David McAdam of the University of Rochester Medical Center. The medical center is one of 14 sites in the Autism Speaks Autism Treatment Network (ATN). McAdam is also a faculty member in the division of neurodevelopmental and behavioral pediatrics at the Strong Center for Developmental Disabilities. Jill Aldrich, his study coordinator, helped with the preparation of this post.

Today, I’m pleased to be able to share the early results of a study we are conducting with the goal of developing a training manual to help parents safeguard children with autism from wandering. This research is being made possible by a research grant from Autism Speaks. I would like to thank all of Autism Speaks’ many volunteers and donors for supporting this work.

As many readers of this column know well, wandering (also called elopement or bolting) is a great safety concern for families with children who have autism. Many parents tell us that wandering is the autism-related behavior that causes them the greatest concern. For good reason, they worry that any lapse in their vigilance could result in injury or worse. Sadly, we read about these worst-case scenarios all too often in the news headlines.

We also know that autism-related wandering is very common. In 2012, a parent survey by the Interactive Autism Network (IAN) found that around half of all children with autism wander between the ages 4 and 10 years of age. This rate was four times higher for children with autism than for their siblings who did not have autism.

But while wandering is the challenging behavior that concerns parents the most, the research on preventing wandering is meager compared to the research that’s gone into behavioral interventions and other treatments for other types of challenging behaviors. 

For example, more than 200 published studies have evaluated interventions to decrease repetitive behavior. By contrast, only a small handful of studies with a small number of participants have tested interventions for wandering. What’s more, all of these studies were conducted in experimental settings. None have been evaluated in real-world settings to see whether parents and other caregivers can effectively use the intervention in homes, schools, stores and other places in the community.

In response to this lack of research – and to the concerns we hear every day from parents – we proposed a pilot study that would develop and test an innovative parent training program to reduce wandering. A trainer will use the manual in counseling sessions with one or both parents.

We began the project by writing guidelines that we could use in our parent training sessions. For example, parents are taught to identify the reasons for their child’s wandering, how to use visual supports, and how to increase communication skills as a replacement behavior.

Next, we shared the materials with a focus group of parents to get their feedback. Among the seemingly small but important insights we gained was that parents much preferred the term “wandering” to “elopement” – the latter being the term we tend to use as professionals. We also learned that many parents blamed themselves for their children’s wandering – concluding that it had to do with their parenting style. Parents also described common situations in which there children displayed wandering. Shopping trips were a classic example.

After revising the guidelines based on this feedback, we tested them with three families. Each had a child who had wandered or attempted to do so. We met with one or both parents during a series of one-on-one sessions and used a collaborative process to develop an intervention plan for their home.  

This started with parents observing and collecting information about their children’s wandering. Based on this, we developed a hypothesis – or proposed reason – as to why their child wandered. For example, the child might wander because he liked to play on a neighbor’s playset. Another child might wander to engage in stimulatory behavior such as swinging, flapping or spinning.

Then, we help parents develop specific intervention techniques tailored to their child’s wandering. This can include visual schedules and teaching their child alternative communication skills to express their needs.

We’ve again refined the guidelines based on these early results, and are now testing the manual’s usefulness with more families.  

To date, 26 family members have agreed to work with us. Although we’ve not completed the study, we’ve already gained several important insights:

* Our parents are consistently reporting that they like that our parent training is very interactive.

* We’ve learned that most children’s wandering is goal-directed. That is, they are focused on reaching something they desire – be it an object or an activity.

* Some children are looking for experiences that provide them with the sensory feedback that they find enjoyable. For example, a child might be drawn to the neighborhood mailbox because he loves opening and closing the metal mail flap.  

* We also learned that many parents like working collaboratively with a behavioral therapist to develop and test personalized strategies for their child’s wandering.

Importantly, we see strong evidence that parents value this program. For example, almost all of the parents have kept their appointments, completed their homework assignments and been active participants in developing materials for their children – including personalized visual supports.

After we complete our current project, we hope to share the manual with families through behavior therapists and other autism specialists across the country. We also look forward to partnering with researchers at other universities to involve more families in the development of these materials.

In closing, I again want to thank the Autism Speaks community for supporting this work. We look forward to sharing the results in the coming year.

Editor’s note: Learn about Autism Speaks’ wandering-related resources and safety initiatives:
Preventing Wandering: Resources for Parents and First Responders
Autism Speaks awards grant to Project Lifesaver
Autism Speaks and NCMEC provide autism safety training to the NYPD

 Also see “Study finds a third of schoolkids with autism wander from safety each year,” in the Autism Speaks research news column.

* Learn more about the Autism Speaks Autism Treatment Network here.
* Find the ATN center nearest you 
here.
* Explore our archive of ATN expert-advice blogs and news stories 
here.

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.