Autism and Wandering

6 Apr

One issue which has been getting much discussion lately is that of wandering. Elopement. Autistics (and others) who get up and leave the home, classroom, or other place and wander. Anecdotally, it is more common amongst autistics. It is one of the first behaviors I was told about after hearing a diagnosis for my kid. One the one hand it is dangerous. A person can get lost or get into traffic or another unsafe situation. On the other hand, wandering can be an attempt to escape an inappropriate or harmful setting. While I hate presenting topics as unresolved “on the one hand/on the other hand” situations, there is a time critical discussion going on: should a new diagnostic code be implemented (ICD-9 code) for wandering. So I am presenting two pieces today: one by ASAN and other groups presenting their arguments against the ICD-9 code, and one by the Autism Science Foundation and others calling for participation in an IAN survey and support for the ICD-9 code.

My view so far is this:

As a means to collect data on wandering, I doubt this will be of much use, especially in the short term. Unless the code is a means to some end (some supports to address the cause of wandering), I don’t think the code will be used by physicians. If autism itself gives us any experience, we will see a multi-year increase in wandering. A wandering “epidemic” if you will. However, and more importantly to me, without this code, will there be funding from insurance and other sources to provide those supports?

There is much discussion of how prevalent wandering is amongst autistics. I don’t know if that is really the point. If wandering “only” occurs in, say, 10% of the population, does that mean there is no need for the code and for, hopefully, improved supports? No. If wandering is a major problem, one which puts some people at great risk of harm or death, that is where the focus should lie.

As I said, I am still forming my views on this and I welcome a good discussion.

3 Responses to “Autism and Wandering”

  1. passionlessDrone April 6, 2011 at 18:08 #

    Hi Sullivan –

    I like your approach of a few separate posts on this.

    I would generally agree with you that the label would have almost zero real world use; I’d imagine that the online discussions of it thus far already far outstrip the number of times it would be utilized in a practical sense.

    My son has wandered a few times, once buck naked, and I found him about a quarter of a mile off playing in a neighbors yard. Big fun! To my knowledge, he’s never wandered off at school. Even if he hasn’t yet, the people who work with him understand well and good, this is an individual whose spatial location must be known at all times.

    Lets say that he wandered off from school today, or every day next week? What then? Would an IDC code really make a meaningful difference in how he was handled at school; i.e., ‘he doesn’t have the idc-9 code for wandering, so there just isn’t anything else we can do!’? I would argue that the reality is that a child with problems wandering is going to be treated differently whether or not they have an ICD-9. It took us years to get the school to even give him an educational autism diagnosis, literally years after he got one from the medical community.

    As far as what services might, eventually, be appropriate if such a label were instituted, I think we all can see the writing on the wall that this is largely going to be a concern relegated to thought experiment in the next few years. We all need to be looking for ways wherein the problems are our children face are handled without ‘services’. That is just the reality.

    That being said, I’m absolutely in love with ASANs position here, as it an exquisitely detailed portrait of people that don’t get it. This is the ASAN that the public needs to know. Thanks for broadcasting it.

    The label isn’t the problem. The problem is the problem.

    – pD

  2. McD April 6, 2011 at 20:44 #

    I posted on the other thread before I saw this, so I’ll repeat our main experience:

    We have had several police callouts and a fullblown search and rescue last year. The little monkey was found 6 kilometres from home stark naked on his scooter (he seems to have taken his gear off when he went for a swim in some muddy water). They had alerted the taxis, and a driver spotted the naked boy streaking down the street. He was buzzing when we got him back, he had had a total adventure for several hours. I was so sick afterwards that I was in bed with vomiting and migraines for 3 days.

    So, glad to see more research in this area. We looked into GPS locators, but found none that were non-removeable and waterproof.

    This was the big issue, we usually knew he was gone within minutes, but he was usually smart enough to go on a scooter, and could be down one of eight routes within a minute. One locator we used, he would simply remove from its strap, so it was useless. The others, designed for Alzheimers’ people were necklaces, which were useless.

    He has gone from school, and home, and while shopping. His first forays were just ‘bolting’. But later ones, he has a destination in mind (Toyworld was one – $240 worth of Thomas toys ripped open). We have now worked out where he is most likely to go, and have concentrated on teaching him the safest route to get there from home and school, and road safety rules. He practices them daily, and once a week, he earns enough points to go there, accompanied, as a treat (Uncle Bob’s place, with a huge wooden Thomas railway set).

    We can’t really stop the bolting, but we can make sure he gets there as safely as possible, and that we have a fair idea of where he is going.

  3. Esattezza April 7, 2011 at 06:20 #

    Whee does the IAN article give support for the new code? It says the data gathered will be used by policy makers, which seems to imply that policy will be formed around at least partially based on their results. This lack of meaningful data behind it is my biggest problem with the code (other than the potential for abuse, which, let’s face it, is inherent in any code written without sufficient supporting data, and therefore without sufficient detail)

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