Monday, 8 October 2012

Wandering and autism

It is every parent's nightmare. You take your eye of your child for 10 seconds and they're off. "But they were there a second ago" is the thought running through your mind as the eyes dart randomly about trying to spot the coat, T-shirt or dress, as just about every worse case scenario runs through your mind.

That scene (which I have been through myself on more than one occasion) demonstrates one of the more heart-pounding moments of raising young children. Suffice to say that 99.99% of the time, no harm comes from the little mites absconding as they are found and brought back to the fold to the sound of "I was so worried about you..." (or words to that effect). It certainly does little good to the blood pressure though.

Wandering and elopement in cases of autism spectrum disorders is something which has been discussed for quite a while now. Following reports of a number of children (and adults) with autism wandering off, sometimes with the very worst fears being realised, I remember some moves a while back to highlight the issue. The publication of the recent paper by Connie Anderson and colleagues* now reinforces the views that (a) wandering is actually quite prevalent in children with autism compared with siblings and (b) a lot more needs to be done to reduce the risk and consequences of elopement.

There's little point in me going into great detail to explain the study and its particulars when it can come from one of the author's themselves as per this post on the Autism Speaks blog and an intricate description of the findings for the ScienceDaily report on this work. Suffice to say that out of over 1200 parents of children with autism questioned as part of the IAN project about the wandering and elopement experiences of their child, about half were reported to have engaged or tried to engage in at least one instance of wandering behaviour after the age of 4. As per the media reporting on this paper, half of those wandering had been gone long enough to cause concern, there were quite a few 'close calls' and law enforcement were involved in a sizable minority of cases. The severity of presentation of autistic symptoms also seemed to be an influence on the likelihood of wandering.

I began this post talking about young children doing what young children do and wandering off as various curiosities catch their attention. It's important to make a distinction between that scenario and what is being detailed in the current study in children with autism over 4 years of age. Although bearing in mind it is quite difficult to interpret 'intent' when such wandering episodes occur, there was also a suggestion that quite a few cases of wandering in autism highlighted in the current study were not random acts but rather had planning, intent and goal-seeking in mind outside of other conditions where a decline in cognitive function is [partially] attributed to elopement events**.

There are quite a few factors arising from this latest data and the other very limited evidence in this area (see here***). Developing suitable intervention programs both to curb wandering before it happens and minimise instances of elopement where there is a history of it is one of the suggestions being tabled. Indeed this is not the first time that such measures have been suggested or indeed researched as per research like this one**** and this one*****, both with an ABA slant to them.

Then there is better awareness and education for all of us, the public at large. Indeed when I tweeted about the publication of this study, I noticed one particular comment was received shown below.


I assume the inference was that the relationship between autism and wandering/elopement was already taken as read. If this is the case, then at least the latest publicity for the Anderson study might serve as a useful top-up to that knowledge. Hopefully however this will not be all that autism becomes in the public eye.

There are perhaps certain groups of people for who this study will be of particular interest. I'm thinking specifically of law enforcement agencies, who are often at the sharp end of dealing with extreme cases of wandering where autism is a factor. So for example, them knowing a little bit of background about the wanderer in question - their interests -  and any link to possible clues as to where they might have gone as a result, and indeed the daily living skills or level of functioning of the person concerned. Also whether things like a medicines routine is being followed and the impact on any comorbidity such as epilepsy. Without trying to sound too much like 'Big Brother' one speculates as to whether some kind of register of some of these details could already be held by such agencies so as to formulate as quick a response as possible following notification of wandering.

Finally technology surely must play a hand in any pre-emptive or intervention strategy for wandering in autism. Without trying to provide product placements, there are already some interesting products on the market predominantly based on GPS for tracking wanderers. Again based on research predominantly in conditions like Alzheimer's disease, there may be other tracking options also potentially open to wandering in autism as represented by the wearable technologies (see here) and indeed the revolution in things like smart fabrics.

The wide-ranging interest in the Anderson paper and its results are testament to how important this issue is to a large portion of the autism community. Whilst the definition of autism implies that the condition is not life-threatening, what this research serves to illustrate is that the net effects of the behaviours associated with autism can, in some cases, place that person at some significant risk. It is with that thought in mind, that this issue deserves much greater research attention.

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* Anderson C. et al. Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics. October 2012.

** Holtzer R. et al. Psychopathological features in Alzheimer's disease: course and relationship with cognitive status. J Am Geriatr Soc. 2003; 51: 953-960.

*** Matson JL. & Rivet TT. Characteristics of challenging behaviours in adults with autistic disorder, PDD-NOS, and intellectual disability. J Intellect Dev Disabil. 2008; 33: 323-329.

**** Call NA. Differential reinforcement with and without blocking as treatment for elopement. J Appl Behav Anal. 2011; 44: 903–907.

***** Falcomata TS. et al. Assessment and treatment of elopement maintained by access to stereotypy. J Appl Behav Anal. 2010; 43: 513–517.

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ResearchBlogging.org Connie Anderson, J. Kiely Law, Amy Daniels, Catherine Rice, David S. Mandell, Louis Hagopian, & Paul A. Law (2012). Occurrence and family impact of elopement in children with autism spectrum disorders Pediatrics : 10.1542/peds.2012-0762