A Medical Code for Autistic Wandering: What's Your Opinion?

Ne’eman has stated in the past that he does not even believe that asperger’s and autism are disabilities, so his credibility ranks zero. I am glad these discussions are being held. Something should be done to prevent tragic deaths of severely autistic children who often wader away or have no clue of danger.

I think this is a very important issue be is medical or behavior. One could look at it as autism is medical, so any behavior would sort of be medical related. Aside from the deaths that can and do occur from wandering and the resources used to search for them, parents and caregivers are often charged with neglect when the child/ adult wanders off. I think this is a valid area of autism to better understand.

If you needed yet another example of how Ari Ne’eman doesn’t speak for anyone except those with extremely high functioning autism, this is it. He is more concerned with hypothetical outcomes than he is with the very real – and deadly – dangers associated with wandering in children who have autism.

If you are interested in Mr Ne’eman’s full reasons for opposing these labels, you should read the Action Alert he posted on the ASAN site. It is very telling.

MJ, if you think schools physically restraining kids is a “hypothetical outcome,” I honestly don’t know what to say to you.

Mtthw,

You may not like this answer, but if this label will “encourage districts to plan for the use of restraint for these students in Individualized Education Plans (IEPs) and school safety planning” (as Ari Ne’eman put it) – I don’t think that is necessarily a bad thing.

There are times when restraints – when used appropriately – are necessary for the child’s safety. And just to be clear, I am not talking about locking the child in a closet for hours on end but rather just physically preventing the child from leaving. Or just having some extra measures in place with the understanding that wandering is an issue.

The problem is when the use of restraints are used abused, taken to a completely inappropriate level, or used as a punishment. In that case, the problem then isn’t the restraints themselves per se but rather that the school acted inappropriately. But if your school district is doing things like this then you have a bigger problem than your child just having an extra label.

Confessions of an Aspie, or – securing your autism spectrum child is critical.

By eighth grade I was making sophisticated pipe bombs large enough to destroy an entire treehouse. By tenth grade I had figured out how to make master keys. By tenth grade I was manufacturing nitrate based explosives.

My son had fetishes for finding and mixing liquids of all sorts by age three. He had a fetish for sharps by age four. He smuggled a scissors to school and sheared an antagonist’s hair by age ten. By age eleven he had crushed the hood of a car by jumping off the roof onto it. By age twelve or so he manufactured a completely functional, accurate and lethal crossbow from household scrap. By age twelve he had learned he could gross people out by eating large bugs and worms. Somewhere around that age he also discovered the joys of aerosol can blowtorches. By age thirteen he was into explosives. By age fourteen he was wandering at night in abandoned factory buildings, climbing to the roofs in the dark. He fell once.

I had to live in fear every moment of his childhood, never knowing when he might get up in the middle of the night and get into something which would be unreachable to the normal child. I had to obtain a lockable pharmacy cabinet and lock up everything sharp, chemicals, cleaners, markers, paints and personal property I didn’t want destroyed in retaliation for assigning punishments.

Neurotypicals just cannot seem to understand why we have to physically restrain our AS children sometimes.

Bill, thank you for your candor and glimpse into the very real aspect of life on spectrum for some individuals. I just wanted to make you aware that Ari Ne’eman is himself on the spectrum and does not consider himself to be neurtypical. He is high functioning. His diagnosis is Apsergers.

Most of the neurotypical parents with loved ones on the spectrum that I am acquainted with, are in favor of supporting this vital, precautionary measure to aid in keeping those on the spectrum from harm.

Well I need to take the other side here. I agree with the concerns that it won’t be executed correctly by the government and that the potential for abuse warrants extreme cation. I understand the fear and the need for a better system but think that we need to proceed very, very carefully.

Out of curiosity, what do you mean by “it won’t be executed correctly by the government”?

The Public school districts

I understand Mr Ne’man’s point that an examination of wandering should never be overlooked in an effort to simply prohibit it: BUT. Can he possibly understand the difficulty of keeping a child safe when the underlying motive for the wandering is entirely benign — like boredom, impulsivity, or a need for constant stimulation? We can’t paint all elopement as communication of abuse. Sometimes a cigar is just a cigar!

mtthw – as we all know, restraint in schools is a reality in some instances. but are you so certain that a new coding system would really do more harm than good? it doesn’t seem that obvious to me.

Lisa

This is a really important issue. I’ve worked with kids and adults with autism for over 25 years and have seen wandering and bolting. The bolting came seemingly come out of nowhere and a child or adult can be hit by a car in an instant. This behavior can limit an individuals community access due to severe safety concerns. In the adult world particularly, the level of staffing can’t always properly support people who exhibit this behavior. We work as hard as we can to try and figure out why and work with the cause, but the reality is that sometimes even the most vigilant of staff can’t be quick enough.
It is very difficult to see an individual who is 21 turn 22, with the very same needs, be handed the rights of an adult without any change in competence or comprehension of the dangers around them. There is indeed a very big difference between high functioning people with Asperger’s or autism and those who are in life long care due to the nature and severity of their disability.

The Question in my mind is this a lack of teaching and training. How would you quantify wandering 1 time or 2 or many more. Is more awareness the issue and would you also allow children not on the spectrum that wander be classified with the same code ? Has anybody heard the results of the LoJack Safety Net

I welcome your thoughts on this

thanks

Curtis Maybin

The Question in my mind is this a lack of teaching and training. How would you quantify wandering 1 time or 2 or many more. Is more awareness the issue and would you also allow children not on the spectrum that wander be classified with the same code ? Has anybody heard the results of the LoJack Safety Net

I welcome your thoughts on this

thanks

Curtis

MJ – this is an intriguing perspective, and it goes along closely with Bill’s.

For you, Bill, or anyone else with a similar perspective: do you think there is a need for separate policy-making relative to a new code and restraints in institutional settings/schools? Or do you think the present policies are appropriate if properly instituted?

I’m a bit uncertain as to why/how medical coding would have an impact on the legal implications of restraints… that is, why would a new medical code make it ok to lock a child in a dark closet, or put an autistic teen into a strait jacket?

On a similar topic, I’m not sure I understand how new medical coding would help in a situation like Bill’s: his son isn’t so much “wandering” (in the sense that he’s just walking away with no particular direction, etc., as happens with some people with autism, alzheimers, etc.). Rather, it sounds like he is deliberately planning and engaging in activities which he enjoys. While his activity choices may relate to his autism, I can’t think that a medical code for wandering would relate to a teen choosing to embark on potentially lethal experiments with chemicals or explosives.

Lisa

I can see how this can be misused, but I disagree that the fear of misuse by monsters is a valid reason not to do it. The code will help people get access to devices that will save lives, and that’s pretty much the bottom line. They will also save money – searches are very expensive. The idea that people with an ASD wander or bolt only because they are in abusive situations is insultingly misinformed.

Lisa – I’m puzzled by your comment “While families and institutions can lock doors or ask people on the spectrum to wear tracking devices, such measures are often useless.” My understanding is that tracking devices are highly effective in achieving positive results in wandering cases. In my area there have been numerous recoveries of adults with alzheimers or dementia, and some tragic outcomes when tracking devices were not in use.

One of these devices played a role in a TV episode of “Without a Trace” this past week. A boy with HF autism went missing from a museum. It seems the producers went out their way to make the tracking device ineffective – the boy got his arm stuck because of the device. His brother injured him trying to remove it. The father forgot the locator that day. It all makes for good TV, but dramatizing all the things that can possibly go wrong is not reflective of all of the things that usually go right.

“According to Project Lifesaver International, nearly 2,000 searches have resulted in a 100 percent recovery rate. There have been no fatalities.”

A recent rescue:
http://projectlifesaver.org/Lifesaver/boy-with-autism-13-from-maryland/

John – apparently the issue is that it can be hard to keep Project Lifesaver and similar devices ON people with autism.

Wristband, ankle bands and even devices sewn into clothing are often removed – and as a result, of course, the devices are useless.

Naturally, when the devices ARE still on the person in questions, they’re terrifically useful!

Lisa

In my previous post I gave the tip of the iceberg. I suspect with respect to bolting and elopement the commonality between Aspies and lesser intellectually endowed autists is the lack of fear of consequences and total disregard of authority. At a very young age, my bolting fears were the same as other AS parents, or maybe worse because my home was surrounded by cornfields.
If an adult were caught doing the things I mentioned in my first post, he would go to jail. Yet neurotypicals are appalled when autistics are restrained in a manner which is truly secure in total disregard of the consequences of not truly securing the brat.
Neurotypicals also anthropomorphize our AS emotions when they have virtually nothing in common with neurotypical emotions and feelings. (To give you an example; I have had at least four major bones broken, including a broken leg, and never had medical attention for them, because I can tolerate the pain, and pain has no effect on my emotions.)
In one of my previous employments I was actually involved in the design of prisons, and the average home makes a lousy prison because of the windows and doors are intended to be easy to open for fire safety. This gives some unfortunate parents a choice between risking their child gets loose with potentially catastrophic results, or solutions which are within their economic and intellectual means like handcuffs and closets, or having their child institutionalized. The first choice is easy but often lethal, the second choice safe but could end up getting you in jail, and the third just dumps your brat on society saying “I give up, you lock him up somewhere!”.

Continued: I’m gonna cheat today ’cause I just can’t make my point in fewer words….

Legally, the first choice can get you in trouble because you didn’t watch your child every second of every day (and night). On the second choice, even someone with the intellect and economic means to turn part of the house into a humane prison with burglar bars or otherwise unopenable windows and secure doors is probably violating fire code and could end up with a manslaughter charge if there was a tragic fire.

A lot of words to get to my point; neurotypical society and legal system does not leave the AS parent good options, and until neurotypicals change their attitude toward restraining AS children all the codes and labels in the world are not going to help.

Bill, I’m not completely sure I understand what you’re saying, and want to be sure I get it.

Are you saying “my son is a ‘brat’ who, in addition to having an ASD, is also deliberately and intentional doing precisely those things that would send him to Juvenile Detention. Given the state of things with my son, some form of restraint is not only a good idea but a necessity?”

Or are you saying “Asperger syndrome is a disorder which creates an internal need for boys like my son to do illegal and potentially lethal things, and thus we need a law that allows us to restrain children and adults with Asperger syndrome?”

Or are you saying “parents and/or caregivers need the ability to create something akin to jail for people with ASD’s who are prone to bolting/wandering/misbehavior, with or without an understanding of what they’re doing?”

Do you see any distinction between a person who is deliberately breaking out of the house and breaking the law and someone who walks away with no particular intent or direction or understanding of where he’s headed?

IMO, we’re talking apples and oranges. A bright, verbal teen who is wandering around factories at night and setting off home made pipe bombs is very, very different from a non-verbal teen who walks away from school in no particular direction for no particular reason.

Then there’s a third group of people who bolt or wander for a reason (anger, anxiety, fear, etc.) – but are not intentionally committing arson.

Lisa

As you well know, it is a spectrum disease. The transition from wandering off aimlessly to wandering off pointedly isn’t instantaneous. In my daily Googling of autism news I have seen too many drowning incidents to believe these kids randomly find the water; they seek it out.

My sons have clearly sought out the forbidden, be it a three year old deciding he is going to find out what is in the cupboard above the refrigerator at 3:00 AM to the teenager dabbling in every single item in the planet’s pharmacopoeia. So far, I have had to bail my boys out of jail four times. I knew I had lost all control the day one of my Aspie sons just smiled at me when I threatened him with punishment and he held his splayed fingers to his head and said “Hello? Child and Family Services?”. They knew they could do anything and truly get away with it.
A lot of parents don’t realize that these modern Aspie brats constitute a disproportion share of our prison population. They have no social skills and congregate together at the dregs of society, and my one son in particular has outlived five of his friends, and another friend is now a vegetable.

It is never black and white; I never thought about going to jail when I dabbled in explosives as a teen. I suspect some of the autism spectrum adult sex offenses you see almost every day when you “Google News” autism suggests that these people may not understand even as adults the consequences of their actions. Our society expects people to just learn laws by osmosis; they never actually sit down in school and teach kids that if you have sex with a minor you will go to jail. That if you walk onto someone’s property and pick up what looks like scrap you are still stealing. That hacking into a computer is a crime.

Continued…
to specifically answer the various ways you posed it:

The act of the brat is deliberate, but depending on the age he may not understand it could land him in jail, and he certainly doesn’t understand the consequences, like, if you hide in a cornfield so you parents don’t see you making aerosol can blowtorches, you might set the cornfield on fire.

I definitely did not say it creates an internal need to do illegal things; I think it is more that people on TV or older kids do this, so therefore “no one has the right to stop me from doing it.”

We definitely need a way of securing these kids, and even though I am an electrical engineer who is an expert on prison security systems, I don’t know how to translate it to the average household; How do you stop a six year old from slitting or pushing out a window screen and escaping? do you have to secure every window and door and never open a window for fresh air? Install a 50 million dollar ground surveillance radar system?

You and I can both see the distinction of breaking out to break the law, but many of these kids can’t. For some it doesn’t matter how many times you tell them or how many times they get caught, like the autistic guy you see in the news from time to time who keeps “borrowing” public transit trains.

I am trying to talk both apples and oranges, from the aimless wanderer to the train fetish to the older ones who know what they are doing is illegal (but recognize no authority). They all have in common the lack of fear of consequences.

I don’t know the solution, but I want to make certain neurotypicals understand how serious the problem is, and how little parents have in their arsenal to control it.

“Neurotypicals also anthropomorphize our AS emotions when they have virtually nothing in common with neurotypical emotions and feelings.”

Bill, from how you’ve generalized the behaviors of neurotypicals, I can only conclude that AS individuals also anthropomorphize our neurotypical emotions when they have virtually nothing in common with AS emotions and feelings.

However, IMO, both statements are not only logically inaccurate, but unnecessarily prejudicial in nature. As serious as the problem is for some, it is not a serious problem for some others with AS or autism… and that needs to be recognized as well or there will be a tendency towards the “blanket” use of restraints, etc. on children who don’t need them… and who may become resentful, angry, and destructive IF such measures are used on them. What is desperately needed is a more full proof way to know when and where (or if ever) such measures are really most effective.

My son is NOT a dangerous individual drawn towards anything violent or illegal. He has a helpful and generous nature which makes him prone to being taken advantage of and vulnerable to being abused by others. I find it insulting, Bill, that you insist on implying that all people with AS and autism must be obsessed by the same sorts of things as your sons and yourself… or that my assessment of my gentle son must be, therefore, based on my anthropomorphizing my own neurotypical emotions and desires onto him rather than accurately seeing him for the gentle person he truly is. While you feel it is important that the NTs “understand how serious the problem is,” I find it equally important that NTs understand that violent people with AS and autism DO NOT represent the sum total of people with AS and autism either.

“They all have in common the lack of fear of consequences.”

This is yet another sweeping and inaccurate generalization about people with AS and autism. My son has been agonizing several weeks over a VERY minor relationship mistake because the other person involved has overreacted and seen fit to over-punish my son for his actions. I am having great difficulty encouraging him to “try again” with someone else specifically because he absolutely fears such heavy-handed consequences falling on his head yet again for, as I said, a VERY, VERY minor mistake for which he did sincerely apologize and for which he had tried everything in his power to rectify prior to even consulting me for advice on the matter. While some autistic people may not recognize and fear consequences, other can and do.

If breaking down the medical coding into finer categories of behaviors solves the issue of sweeping generalizations being made about a hugely diverse group of individuals – I’m all for it.

Malia, congratulations on having a child who is not a dangerous individual drawn towards things violent or illegal; I wish what I and some other parents go through on no one.

It is difficult to not generalize even when you have an infinite amount of paper, and impossible when you only have a 1000 character limit in a web post. The deaths of my son’s Aspie friends are very real, and the drownings you see in the autism community are very real, and the fact that some autism parents get thrown in jail or have their children taken away even though they tried their best to secure their child is very real. I find it odd you would find it insulting to point out facts.

The success I have had in life came from at some point figuring out that I think completely differently from how normal people think, and then having figured it out, that I for all practical purposes am a different species, then endeavoring to study neurotypicals in order to understand them. This occurred years before I had even heard of Asperger’s. I took every course in psychology I could fit into my course schedule, and read every article in science journals on the mind. What is illogical about this? Shouldn’t I be trying to figure out how neurotypicals think if I have to live and work with them? I certainly don’t anthropomorphize neurotypicals when I know my perspective isn’t anthropic.

I noted you used the word prejudice in a pejorative sense. (If you check a dictionary, you will see prejudice can be favorable or unfavorable.) As soon as we declare a child to be autistic we have made a judgment which will bias our conceived notions. I certainly hope you use prejudice with your autistic child, because if you are incapable of judging that your child is different, and based on that difference that your child might need to be handled differently, then your lack of prejudice may doom your child to exposure to hazards they are ill prepared for.

Although some wouldn’t fit the description, this topic is about those who do. I’m not sure that medical terming wandering is the answer, but I think collecting data on the various reasons for wandering can only be good. I’m not sure that the result would be restraints used, maybe it would but I do know some kids do need some use of it. If it were a matter of keeping my child safe, I’d consider it. It takes very little time to drown or be hit by a car, or lost in the woods never to be found. I also know a few families who use Project Lifesaver, which seemed such a great thing for parents, but you only get so many times to use it to call in before you’re turned into child protection for a lost child. Such a medical term could help prevent that from happening, while still locating the child and keeping them safe and keeping the family intact.

Bill -

Typically, the word “anthropomorphize” means “assign human attributes to a non-human thing;” for example “the mountain is angry.”

You say “I certainly don’t anthropomorphize neurotypicals when I know my perspective isn’t anthropic.” I’m not sure what this means. Obviously both you and the people you’re writing about are human…??

Lisa

Bill, the insult comes in not from your stating facts about individuals, but in your expanding those facts to include individuals for whom you have absolutely no evidence that they behave exactly the same way as the individuals you mention. The AS or autism diagnostic criteria do not include an arbitrary tendency to violence or fascination with sharp objects, explosives or illegal activity nor does it arbitrarily include a lack of respect for authority or an absence of fear of consequences… all of which were attributes you implied were general traits of people with AS and autism… as evidenced by your use of phrases like “They all have in common…” Statements like those don’t spread facts, they cause people to “expect” all people with autism to behave violently, have the fascinations you mention, and people to anticipate that they have to invoke harsh mentions to force individuals to respect authority.

My son has been on the receiving end of much of this prejudice generated by people making such generalized statements such as those you made in your post. He has unfairly suffered for it… and yes, I remain insulted and incensed by them regardless of whatever excuse you come up with for making them.

Oops typo – s/b “invoke harsh measures to force…”

Bill, in addition, you say that you “think completely differently from how normal people think.” Did it ever occur to you that it is also likely that you also think differently than a number of people who have also been diagnosed with AS and autism? Individuals with autism and AS are sentient human beings, and as such, think individually… as do I and as do you. We have various moments where we may coincidentally think alike, but in the sum total of our process of thought… we think differently from each other… and differently from everyone else.

I never implied that the incidents you mentioned were not real. I only stated a fact… that my son has been diagnosed with an ASD and is non-violent and not obsessed with sharp objects or explosives. My son is responsible and, without any doubt, can be trusted with, say, a knife. The problem is, after hearing statements such as those you make, other people become very hesitant to trust him with, say, even his own steak knife – which stigmatizes him unnecessarily if, say, we have dinner out. Such treatment rightfully makes him frustrated and angry.

As I did state, we need a more foolproof way to help accurately indicate which individuals need stronger measures (such as restraints) to control behavior and which ones do not… without making the general public afraid of people they should most certainly not be afraid of.

“I noted you used the word prejudice in a pejorative sense.”

Bill, Yes, I most certainly did… because I was responding specifically to your portrayal that people with ASDs and autism are arbitrarily “brats” etc. – an inaccurate generalization that tends to generate negative prejudice towards people with ASDs and autism.

“I certainly don’t anthropomorphize neurotypicals when I know my perspective isn’t anthropic.” Poppycock. Check your DNA. You ARE human; therefore, your perspective is as anthropic as mine.

The most common anthropomorphizing in normal society is the tendency of some humans to imagine their pets to think and have emotions similar to themselves. In this context they are assuming the pet’s mind works like their mind. this is not a novel concept; I just got 99400 hits on Google with the combination of anthropomorphize and pets OR animals.

Obviously the normal people recognize that their pet is not human; the anthropomorphizing is directed toward the emotions and relationships with the pet.

So an extremely common use of the word anthropomorphize is to take a clearly different brain, and attribute human qualities to it.

Autism spectrum people have different brains; you can see it in autopsy, you can see it histological examinations, you can see it in MRI’s, you can see it in brain growth patterns and statistically in brain volumes. You can infer it from behavior, memory, focus, nervous system comorbidities and testing.

Not surprisingly, autism spectrum people fail at attempting to figure out “theory of mind”, since their mind works differently, and they erroneously assume neurotypical minds work like theirs.

The reverse is also true, that neurotypicals cannot relate to AS people, especially when it comes to fear, pain, love, community and trust. In a character limited blog, I can’t think of a more comprehensive single word than anthropomorphize to describe the NT tendency to automatically think the AS person thinks like they do, and certainly no word exists to describe the AS person assuming the NT mind works like theirs.

“Autism spectrum people have different brains”… but they do not have “inhuman” brains… so to attribute human thought qualities to people with autism is not “anthropmorphizing.” You are human, so, by definition, your perspective is clearly also “anthropic” by definition.

An autism diagnosis does not remove a person from the human species. If you disagree, then please provide the scientific study that backs that up. Having completely “neurotypical” brain function (whatever that is!) is not a requirement for being “human.” Since my son is human, I cannot “anthropomorphize” his behavior since his behavior, whatever it is, is ALREADY human in nature. It is true that you cannot anthropomorphize NT behavior, but not because your perspective is not anthropic. Your perspective is undeniably anthropic because you are humam. The behavior of NTs cannot be anthropomorphized simply because NTs are also already human.

I want to address the mystery of Malia’s disdain for the word “brat”. I honestly can’t figure out her logic. At some points in her blog she seems to criticize me for painting the entire autism community as being violent and asserts her child isn’t, which is reasonable to believe her child isn’t. Yet when I confine the problem to brats, which purposefully excludes her pacific child and other similar well behaved AS children, she objects to that too.

We all know what brat means. My boys were brats. Whether or not you feel their cerebral differences explains their anti-social tendencies doesn’t change the fact that my sons, after they learned we and society could not control them, were brats.
My son with the most pronounced Asperger’s who is around thirty years old, has only just recently seemed to have been broken to the saddle, but it took some jail time, having his roommate OD, another friend hang himself, and most recently a former girlfriend OD, before he finally stopped his quixotic quest to prove he didn’t have to conform to the despised mores of the politically correct neurotypical society which had so ruthlessly rejected him as a child.

In describing how humans ascribe human emotions to pets, the word “anthropomorphize” is accurate since pets are not human. However, AS people ARE human, so the use of the term “anthropomorphize” has the effect of “dehumanizing” people… and that, I find, offensive.

You mentioned that you “can’t think of a more comprehensive single word than anthropomorphize to describe the NT tendency to automatically think the AS person thinks like they do, and certainly no word exists to describe the AS person assuming the NT mind works like theirs.” However, I asked whether you considered that an AS person automatically thinking that the mind of a different AS person works exactly like theirs is, in essence, doing the same thing you accuse NT people of when you say they “anthropomorphize” the thought processes of AS people. You are ascribing YOUR motives to the actions of other people with AS, when in reality THEIR motives could also be completely different from yours.

There is nothing in the criteria for an AS diagnosis that says an AS person will wander or will be obsessed with sharp objects and explosives or will be violent or unafraid of consequences. The criteria do allow that these specific behaviors MAY occur in connection with autism, but they also allow that these specific behaviors MAY NOT occur. Therefore, a person who is non-violent and not obsessed with such things is no less AS than one who is. You may understand the one who is, but you are in no better position than I to understand the one who is not, since that individual does not think exactly like you any more than he or she thinks exactly like me.

“I want to address the mystery of Malia’s disdain for the word “brat”. I honestly can’t figure out her logic. At some points in her blog she seems to criticize me for painting the entire autism community as being violent and asserts her child isn’t, which is reasonable to believe her child isn’t. Yet when I confine the problem to brats, which purposefully excludes her pacific child and other similar well behaved AS children, she objects to that too.”

One definition of “brat” – “specifically : an ill-mannered annoying child” (per Free Merriam-Webster dictionary). There is nothing in the definition that arbitrarily excludes a non-violent child from this definition and, IMO, there are many non-violent, annoying people on the planet who don’t display perfect manners. So, I am uncertain as to how Bill figures he purposefully excluded non-violent AS children merely by using that term.

Furthermore, “brat” is a word that implies not just how the child behaves, but how another person should “feel” about how the child behaves (i.e. annoyed). This is why it is usually taken in a derogatory way when it is clearly not being used in a playful one.

Well, I do think there’s a difference between a “brat” (an ill behaved child who’s often allowed to get his own way), an autistic child with difficult behaviors related to the autism, and an autistic child with deliberately oppositional and/or illegal behaviors.

But this blog is about a new medical code for wandering, and I’d love to get back to topic.

I honestly don’t think it’s appropriate to have a medical diagnosis for brattiness.

And it’s pretty pointless to have a medical wandering diagnosis for a teen who deliberately sets off pipe bombs in the corn fields, winds up in jail, and so forth – even if such a diagnosis were deemed appropriate by some practitioner.

IMO, the code is INTENDED for people with autism who wander without warning or specific intent, get lost, can’t communicate their name or address, and are in danger as a result of wandering.

The FEAR around this idea is that the medical code will be used improperly to restrain anyone on the autism spectrum – or that it will interfere with the process of actually figuring out WHY a person with autism is wandering. One person on the About.com facebook page suggested that school staff, seeing a medical code for wandering, might fail to investigate possible abuse.

Comments?

Lisa

Lisa, thanks for bringing us back.

I fail to see the connection between the existence of a medical code and the incurious staff member who ignores the possibility of communicative intent. Any staff member who has access to medical records would (most likely) already know that an individual has a tendency to wander. Elopement is commonly noted in school records, police reports, psych evaluations, and in many other easily obtainable methods of information sharing. If a parent or caregiver applies to their insurance company for help covering the cost of a special door lock (for example), how does this create a “more” stigmatizing paper trail?

I suppose that the person who made the comment is expressing a fear that once an individual has a history of wandering it will become solely a logistical problem forevermore. But the existence of a medical code is a more private matter than the various other paper trails that follow an episode of wandering that requires resolution outside the family.

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And so begins the tale of that sickly-familiar and frantic search, a townsperson calling the police, a dash to pick him up — barefoot and cross at being stopped — a mile from home. And what did he say when he saw my face? Forget “Hi Mom.” He said, “No home!” I understood…he doesn’t want to be at home because he is bored. But I have to worry that the policeman will think my child is communicating abuse.

And all of that excitement, attention, and adventure was BIG FUN. My son has now been utterly (but unintentionally) rewarded for slipping out. Will he try to do it again do you think?

I invest in door locks and I learn how to install them backwards (so that you need a key to get out) because no locksmith will do it. They are afraid to get in trouble for fire code violation. I nail windows shut with the same knowledge. I’ve had estimates for alarm systems that would do a much better job than the christmas bells I buy in quantity. Do I wish I had both advice and financial help in our ever-escalating game of The Great Escape? You bet I do.

I understand fear. Fear that bad people may do bad things to our very vulnerable kin. But I contend that those people are able to ignore cries for help NOW, without a code. A medical designation that led to response measures would have nothing to do with encouraging such behavior. The opposite is true — a medical code would mean the involvement of a larger community. Doctors, caseworkers, and therapy professionals will be required to participate in developing solutions and responding to lapses. Today solutions are devised behind (tightly locked) closed doors and internet advice is the best we can hope for.

It would be far more sensible to bring this problem into the light and help families make smart, economic, and effective choices instead of forcing us to plug holes with hammer and nails, in fear and alone.

(P. 2)
If there is a medical awareness of the propensity to wander, that would mean more communication as opposed to less. Consider that the doctor or therapist who submitted such a code would have to make treatment part of their ongoing responsibility. Currently, parents and caregivers cope with this issue ALONE. (That is, unless someone reports them to child protective services). Families and caregivers are not only developing safety measures on their own, but they are scaling their responses based not on what is required but what can be afforded. And it is impossible to ignore that wandering is an underlying cause for many out-of-home placements.

Why not offer families the legitimacy and benefit of medical and logistical counsel? Is it preferable that an individual with autism live in a literal prison because his parents don’t have access to less intrusive measures such as tracking devices, alarm systems, or other newly emerging technologies that might allow safer and less restrictive lifestyles?

I’ve found it difficult to recognize the Wanderers I know in the offspring I saw described above. Allow me introduce you to another wanderer: My ten year old son. He is brimming with energy and craves adventure. His appetite (I should say his need) for constant motion, stimulation, and activity is prodigious. We embrace these wonderful qualities because he spurs us into trying things, going places and undertaking adventures that we never imagined. BUT. We get tired! The last time he managed to jimmy open a window and escape our house, I was sleeping on the couch after a full day of day running after him on the beach. His appetite for stimulation was still on and I was zonked.

I think the potential for abuse is there, and it is perhaps is even greater, without specific behavioral codes in place.

Because ASD people who have a tendency to wander and ASD people who do not are currently lumped together under one umbrella, there is a likelihood for the public and caregivers to generalize about what behaviors to “expect” from an ASD person before they give that person a chance to display their own unique combination of behaviors.

For example, if a caregiver’s previous experience with an ASD person is with one who wandered obsessively and then they are subsequently assigned to another ASD person, their initial expectation or fear is most likely to be that their new charge will have the same tendency. As a result, they may be inclined to “prevent” such behavior by imposing strong restrictions on that individuals movements. If those measures are too strong, the person may become resentful of them – which doesn’t really give the relationship between the caregiver and their new ASD charge as chance to develop on a “positive” footing, does it?

If the “autism” coding is broken down to more accurately describe the various behavioral tendencies of each individual person, then it is more likely that caregivers who can access those code will not make erroneous assumptions about that person’s “likely behavior” based on their previous encounters with other, but disimilar people with autism. If that means that the ASD child who does not have a wandering tendency can be recognized and given some freedom to “explore” their world more naturally while the ASD child who does wander is also recognized and better protected, then I think that would be a good thing. If it being a “medical” coding means that some funding it made available for appropriate technological devises to be purchased for those who need them, then I think that could also be a good thing.

Coding would also mean that the tendency could be formally addressed in the school IEP, in the caregiver plan for respite or personal care through Department of Developmental Disabilities (state of WA), potential reimbursement for monthly monitoring fees for locator devices/alarms systems through medical insurance/medicaid/medicare, and/or potential tax reimbursement from the IRS at the end of the year.

Coding could also potentially assist in SSI or any other disability claim.

-Just thoughts off the top of my head, from the mom of twin Autistics.

Regarding the use of restraints; well now, the term ‘restraints’ is just too dang broad for anyone to go off and get their skirt in a bunch over. After all, a seatbelt is a restraint. The school needs to use a restraint hold for either of my sons during a fit of rage, or they could hurt themselves (head into floor, wall, window -ER room & stitches to prove that one) or hurt others. My boys calm down with ’squish & hug’ restraint, as I call it…deep pressure helps to calm them.

A mom of typical kids, without any knowledge of sensory needs of autistic children or my kids in specific, would probably drop her teeth if she saw me squishing my 13 year old boys against the couch cushions as they are screaming and thrashing, and certainly would question my sanity at approving a similar approach in school. That same mom would run from the room crying after 20 minutes alone with my boys in a rage, and would be amazed at how happy they are once they have ’settled back into their skins’ after they have felt squished for a little bit.

PS, we also have key-coded locks on the insides of 6 doors in our home, and a 2/3rd door w/key code at the top of our stairs. Makes life so much easier. -Code is posted vertically on the door that leads out, so people can enter it to exit, but our sons cannot translate vertical code to the horizontal keypad (not yet, anyway).

My son is autistic and the State of Florida has no way to identify this on his Florida ID. If he is involved in anything that law enforcement is concerned, he may be abused or hurt. This is my concern…how many States ID and identify the handicaped?