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

5 comments:

  1. Love this post, and agree that while wandering and autism pairing seems like a BFD (big fat duh) to the autism world, studies like this one help increase awareness and education in particular for the law enforcement crowd. See my related blog post on my own experience here:
    http://everybodystims.blogspot.com/2012/07/not-all-who-wander-are-lost.html

    It was interesting, to say the least. Great blog, I love science!

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  2. Many thanks for dropping by Joanna.

    Indeed a very interesting post and adding the 'human face' to the science discussed today.

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  4. Thank you Paul for this posting, it is an area I had not come across before. As a psychology student (MSC Health now) and parent of a 13 year old with a diagnosis from 2 years old, I completely understand the wandering aspect for this group, whether they be infant or older.

    I do ask myself though, whether wandering is actually one part of a wider issue based on 'fear'. If we consider the normally developing child, what actually prevents them from wandering? Most children will wander at some point, especially when presented with an array of distractions... oh the joy of taking a child shopping! BUT, most learn that this practice is dangerous. It is not unusual to see a young child, rooted to the spot, in the middle of a busy shopping area, crying its heart out because they "have lost my mummy". These children have separation axiety and are quite simply scared. Many young children become instantly fractious if they find their carer is no longer in sight and will often, after these negative experiences, keep checking to ensure mum is always in view, keeping close.

    Do ASD children do this? From my own experience, they do not. Is this a lack of fear within the child or simply a lack of caring/attachment (was I such a bad mother? :o).

    I would be very interested to see if studies have been done on fear in relation to danger in ASD children. Fear on an emotional, sensory and social level is well documented but it is the lack of fear for dangerous situations which interests me. I certainly consider, for example, the main character in 'Jack and the Beanstalk' to be autistic. What other child would climb that high with no regard to the perils of falling, the possibility of death? To climb hundreds of feet without a single twinge of adrenalin seems unnatural, so does this give any clues to lack of fear, and possible factors in wandering?

    Picking up on your thoughts for tracking etc. I can honestly say that if there were a way to tag my child when he were younger I would have paid for it. My dogs are microchipped, I could have had (but do not need I may add :o) a slow release contraception device injected under my skin and could go to my tattoo/piercing parlour and have a metal plate injected under my skin, to add external jewels of my choice. If there were a permanent (replaceable) under the skin tracking device for children I would have had one for both of my boys. Before anyone screams Ethics, there are many issues with this idea and therefore this is not an idea for JML to considering adding to their tele-shopping range.

    The current range of tracking devices certainly meet the needs of many parents or carers but cost may be prohibitive and it must be understood that the sensory nature of some ASD children will not suit certain items. It is however a start and that is extremely important in helping wanderers keep safe.

    Thank you again Paul for posting this.

    Julie

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  5. Thanks for your comments Julie.

    An interesting thought about fear and fearlessness in autism. Accepting that nightmares and indeed night terrors have been reported in cases of autism, it's an interesting question about whether the fear that perhaps regulates dangerous behaviour is present to the same extent in children with autism.

    In terms of the tracking side of things I wonder if perhaps that would be part of the continuation of this area of research in terms of the 'acceptability' of microchip devices. Noting that extended release formulations of certain drugs (e.g. risperidone) are already available (via injection), this is certainly not something totally new. More than that one wonders whether a simple transdermal patch would suffice?

    Might I suggest you have some very good ideas for your research project and dissertation....

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