"911" Autism Emergency Registry?

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WTF? Do I want to do this or not?

I'm a parent of two PDD kids (five and seven years old) and the county special services cooperative has been helpful to us for the most part, but they sent us a registration form to fill in with basic contact info that will be filed with "911" operators and the police department in case of emergencies. Of course, they already have all this info, but this form includes questions about their autism and the idea is to create a database of persons on the spectrum. I have some mixed feelings about this and I'm hoping for some feedback from the collective wisdom, here.

I didn't put this into the parent section, because I want to hear from everyone of all ages, whether I should volunteer to be put on this list with other autistics. Is this a good idea? Has anyone benefitted from the police and emergency workers knowing you are on the spectrum?

If I had special needs kids who would wander off, or something like that, I could see a benefit, but my kids are great. My two kids are not bad off, at all, for the most part. They are both genius level High Functioning and know their personal info inside and out, but there has never been any way or means to test their "functioning" in an emergency (Thank goodness!).

My parenting instinct says "jump on it", "how can it hurt", "it's all public info, anyway, right", "what if one of them gets scared, will they be able to speak coherently".

My paranoia says "it's dangerous to get on too many lists", "how many others will have access to our privacy", "why do they want to keep a separate record of autistics", "they already have all the contact info, what else do they REALLY want to know" ...

On the other hand, I've seen what happens to teens who are out at night around here and it would totally freak my kids out. The cops hit them with a murderously bright spotlight and 'bleep blurp' their siren at them to stop and submit to questioning. The cop gets out of the car and immediately gets into the kids faces with fast questions, while blinding them with flashlights in their eyes as an inspection for drug use. As you can imagine, any ONE of those actions would get an inappropriate response from my kids or me either, but the combination might be overwhelming.

The problem is that the cops will have done all these hideously authoritative things and have the kids in cuffs, long before they could even refer to a silly database, so I can't imagine how it could possibly help.

What am I missing, here?

It could be that what you are missing is an autistic brain (or maybe you are I dont know) but you should open a communicative line with your kids about it, as it will be the circumstance they will be dealing with. There is nothing saying that in the future they can not enlist if they find that it would suit them better. Ask them if they think it would be helpful if the police knew in advance that they (your kids) may have trouble with interpersonal social situations while under stress as to create a detriment to the function of the process of whatever the police may be doing. (EDIT: with STRANGERS. with people with TITLES)

Me. I clam up. Totally freeze. Question whether I am important enough to speak. Use their non verbals (or my dictation of it) to come to the conclusion that I am in fact NOT worth addressing (rape murder question -what ever) and slip into smile and nod and shy away.

So, it HAS been tremendously helpful to have started putting out the word that 'issue' associated with me_and_Im_really_sorry. ect. ect. ect.

It helps me to feel more relaxed in general and is a bit of a relief to know that even if the experience is BAD (with officer misunderstanding, oh yeah and there is that suffocation thing) that at least my stats can be traced to some attempt to have avoided them any issues in the first place--and there ARE in existence really nice police people who care about just that sort of thing.


I would say go for it--or even call your day worker at the department to ask if they would ask about any pros and cons just so they will know that you have a barrier to reporting.

In a perfect world.
Strange girl having a bad week--out.

GREAT QUESTION

I'm curious about what the police would have to say if you showed up at the police station and talked to them about your concerns in a neutral situation before a crisis came up. A lot of people out there simply don't know anything about this stuff, and I can imagine them trying to explain it over the radio during a traffic stop or pretty much any other situation where the cops were involved.

Hi, SeaBright,

Good to "hear" from you. Believe it or not, I have had a similar conversation with them, both. They are just too young to understand my reservations, so far. When my son says " ... aren't cops supposed to get everything they want?" he's not quite ready to hear me say, "No, not really". BTW, they got their autism honestly, from me. I don't freeze, I - j u s t - g e t - v e r y - s l o w - w i t h - m y - s p e e c h - . . . not at all like an innocent person.

The second part I quoted is an example of where I'd like to take this feeling, but I'm not that trusting, yet. I believe theoretically, in the long run, under ideal circumstances, when all is said and done, under the best laid plans, it would be a good thing, but I'm still suspicious.

A database such as that would be fine except that if the emergency response personnel are not trained, they will not know what the f**k to do with the information.

One good example if what would happen if your house caught on fire in the middle of the night and the firemen had to try to remove your children? I doubt your children would respond as normal children do. That is the reason the ASA made some of their stickers for windows.

I would ask what training the personnel using the information has and if the answer is none, then ask what use the information is if the person has no idea on how to use it.

Good idea, going to the station. I'm not exactly sure what all my concerns are at this point, but that's why I'm asking for input. Maybe I'm being stupid, but I don't believe their "notification" of a kid's behavior could come in time to prevent a bad situation from escalating into a meltdown of sorts. Maybe they would get them home sooner, you think?

I guess I need to muster some courage and go ask the cops, themselves, but I agree with ljbouchard. What the hell are they going to do with info they can't understand, but ignore it?

I say go for it, for a lot of reasons. What if they were to get picked up by the cops for any reason...let's say that they were at a friend's house, and one of the other kids had drugs. The cops would probably question all the kids, and would probably be extremely suspicious of kids who avoided eye contact. To them that would probably signify guilt.

One thing I do when questioning the motives of any establishment request....is to try and find out who is pushing for or funding it.There have been a few incidents of people with differing disabilities being shot because their behavior was "misinterpreted"....my guess would be that this new policy is a result of a lawsuit(such as the guy who was shot for raising a rack towards an officer and it was seen as a threat...I cant remember what the guys disability was but he had no history of violence.I think having this information on police file puts the ball in their court...if they disregard it,you have more legal standing.I think this would include if they tried Questioning the kids....though I believe all minors are supposed to have guardian with them before questioning?My paranoia always comes from such history's as Nazi Germany....we know what that government did with "information" and considering the state of our current government...I can understand your hesitation(I am a lot of help...lol)

Recently,a boy that the news said..."has some signs of autism?????ASpie? wondered away from home and they are looking for him...dont know how that storey ends.....

I understand your concern. I would be very suspicious indeed. Not from the police but from those who give the police their orders, their responsibilities. From social services that at the moment seem mostly benign.

Realize that political imperatives/strategys/decisions come with a reason..often a seemingly benign one.

I believe western society in the hands of corporations is becoming more authorarian and you just dont know where this will lead in an age when social and mental profiling is becoming the norm.

Do not forget that Aspergers is a "behavioural disorder" and as cute as some people think it is (and can be) is still regarded with suspicion and lumped with other disorders.

Political and sociological "fashions" can change. Remember Fascist Germany. Does the USA and west in this computerized databased and surveilanced age not seem to be on the cusp of a dose of similar "medicine"?


If you think that being registered with the police is going to save your son a tazering then go ahead but do you want your sons in the DATABASE?

In fact considering that they are so young, what possible reason could there be in them being on the police register? Why not (as a matter of personal autonomy if not pride) have them unregistered until a time when they are old enough or events become necessary for them to be registered.

I would be suspicious why a database is being made. Will this info be shared with other agencies? Are certain groups making lists of who is expendable? Could this prevent your kids from getting future employment? Could it be used against them as a preexisting condition and prevent them from getting health insurance at a future employers? If you're kids are high functioning as you say then they should be able to handle themselves and more than likely will never get themselves in a situation involving the cops. Most AS are diligent law abiders by their very nature of being extremely worried of doing the right thing.

Also to be quite honest if they really have AS and PDD their chances of being out late at night where the police could pull them over are slim to none. Aspies generally don't have friends to hang out with nor date as teenagers and many avoid crowded places like movie theaters. A lot of PDD aren't able to drive. So I ask what are you so worried about? Where do you think your kids are going to be running around late at night when the police are cruising to hand out tickets? Aspies will be at home glued to the tv, internet or obsessing over their favorite hobby.

You seem to understand my concerns very well, but it seems police don't need much reason to stop and question people walking at night. Their approach is somewhat toxic to my kids even with the police's gentlest attempts. It has already happened.

Both my kids are quite comfortable walking at night, (which we do every night) and I plan on continueing this as long as possible. They are already showing my tendency to never sleep, anyway. (I don't sleep ... I "cat nap") I expect to reach a point where they will want to be on their own and not have Dad there constantly (I did) and I want every advantage for them. I just can't see this registry as an advantage.

We don't 'do' TV at my house. My kids have suffered a few NFL games and car races, but generally they haven't experienced much commercial programming, yet. We do watch quite a bit of educational things, but I prefer to use disks and not live-air shows. We are outdoor people here. I was always outdoors as a kid and grew to depend on nature for my own solitude and escape from other people's annoyances.

BTW, you are right, none of us have any friends. There are a few people who used to come around when I still worked, but I stopped them from coming after I stopped working with them. I have no interest in pursuing them since I no longer feel obligated to socialize, because of work. I prefer to read a book, surf the net, or listen to my music, and sometimes all at once ... The kids are almost exactly like me. The main difference is that I have fifty one years of life experience to call upon when I encounter problems. (to anyone who knows me, Yes, I had a birthday last week!) In fact, it was at their NT mom's insistence (she's a wonderful, tolerant and intelligent woman, who I would be lost without) that we had them diagnosed and from that experience, I was able to figure out what all of my own sensory issues were all about.

Thanks to all who helped me to work this out. I have decided to trash the registration forms at this point. I can be a very good ignorer, when I apply myself to the task. ;^)