The Wandering Code

It’s like dueling banjos over at Change.org and on Twitter. On the one side, you have the National Autism Association sending out regular tweets and getting “their side” to sign their petition. Their petition states that adding the diagnosis of Wandering to the ICD-9-CM will mean more research into it, create better responses when it happens and so forth. On the other side, you have theAutistic Self-Advocacy Network sending out regular tweets and getting “their side” to sign their petition. Their petition states that adding the diagnosis of Wandering to the ICD-9-CM will mean higher likeliness of seclusion and restraint in the name of treatment, rights being stripped from Autistics, especially autistic adults, and so on.

Being a proud supporter of ASAN, as well as having a chapter, you can guess which side I support. While I have many real life friends that are members or part of NAA, this is yet another area that we will have to agree to disagree (as there are numerous other areas that we do so as well). But yesterday I read a blog where it questions our sincerity in caring for the “lower functioning” “less able” on the Spectrum. So here I want to make it clear that I personally VERY much care.

Daniel is a wanderer. We have thought in the past that we may have to get an Autism dog to help curb that, but so far we have not needed to. We put a double deadbolt lock on our front door. We have had him walk out the front door, around the corner, and into a grocery store. We have had him wander into traffic. Believe me when I say I CARE about anything that has to do with children that wander. It is something we have to prepare for everywhere we go, any place we live or visit. Because of our due diligence, we haven’t had him escape in over a year now.

At the same time, I find it DEEPLY disturbing that anyone would want to put the diagnostic label of wandering onto anyone. Wandering is not a diagnosis, it is a behavior. If it is approved, this would be the first time I’ve EVER seen an Autistic behavior listed as a DIAGNOSIS. If this Autistic behavior is listed as a diagnosis, are there any other Autistic behaviors that would be listed next? To me, that alone makes it not worth it to do.

As well, I do not see how it can possibly help first responders when there are other measures (Mason Alert anyone?) that do not require a new DIAGNOSIS to achieve the same effect. Research to me is a moot point as the reason for wandering is as varied as any other behavioral response. Daniel is a wanderer when he’s very upset. He’ll take off running when he’s flustered or frustrated. Other times he’ll stomp off and then open the door and walk out. It has happened. This is because he’s flustered or frustrated.

What can we do to help him not wander? Recognize when he gets flustered or frustrated, help him communicate how he’s feeling, and help him calm down. Other children, some do it because of an attraction to something. If they don’t have a way to communicate, then sometimes they will wander off. The long or short of it, giving someone the ability to communicate their needs, understand their feelings, and then giving them the tools to support their needs is what needs to happen. Do you need a separate diagnosis for that?

If it’s about getting GPS tracking for your child, what are you doing to PREVENT wandering? There are two key pieces to wandering prevention and response. The GPS device is not nearly enough without a good proactive prevention plan.

What happens to these children that then become adults with this Wandering label? And do we need a diagnostic label BEFORE deciding what’s to happen? I know that they want to research it, but research should ALWAYS come before labeling. The end results of this label are just NOT clear and until they are, we SHOULD NOT diagnose thousands of children and adults.

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