Public Spaces Mean Extra Precautions
I got a new phone yesterday. I’d been hesitant to this for a long time. Even though I knew I’d be able to have my same phone number ported over to the new phone, that little voice that says “well, you never know, could be……” kept running an endless loop in my head.
Charlie, you see, has memorized my cell phone number and recites it perfectly. When we’re out in places like New York city, we’ve been placing a card with his name, mention of his having autism, and my cell number on his person. But if he knows the number, he can always have it with him.
Meaning that, I always need to have the cell phone with me, and that phone always has to have the same number. Sure Charlie could memorize a new number, but who knows which number he might say at a moment of confusion, and to a stranger? I still remember the phone number for the house we lived in when I was 4 - 8 years old; it’s the first number I ever had to memorize and it’s still there.
In yesterday’s Arizona Star, Johanna Eubanks—whose 22-year-old Dave is autistic—notes that many and any public places are potential “minefields” for autistic children. She cites a number of recent stories of autistic children and adults wandering off and being lost, sometimes for days, and also many recent reports of autistic children and adults getting very upset in public places (a church, an airplane) and of the bafflement of bystanders and (in some cases) police and other first responders about what to do—-and also an additional concern: An autistic person (this would include my son, I suspect) may not consider her of himself lost.
Almost every parent has a story of losing a child in a mall, department store, amusement park or some other public place where people are spread out over a large area. Most typical younger children who are lost cry, someone asks the child’s name and then an announcement goes out for Johnny’s mother to pick up her son at customer service or something similar.
But what happens when the child doesn’t speak? What happens when he won’t talk to a stranger, or he’s old enough that he doesn’t appear to be a lost child? Some children with autism are real wanderers and are quite content on their own even if they really shouldn’t be.
There have been a few stories in the news lately of missing people who have autism. They are harder to find. Some are afraid of the strangers who are looking for them and hide. Some simply don’t know they are missing. They aren’t afraid, so no one who sees them realizes something is amiss, unless of course the missing person looks too young to be out alone.
If police are called in when an adult autistic person—who looks “normal”—-is upset, they may think “think they are dealing with someone who is just being beligerant [sic] or is high on drugs” and use excessive force and restraints and even be aggressive. An autistic man named Kevin Colindres went into a coma after police forcefully subdued—in essence hogtied—him; very sadly, he passed away after falling onto a coma. This is something I’ve thought about a lot more as my son Charlie has grown taller and bigger. If he’s anxious in a public place, he might, one time, holler some wordless sounds and when people see the source is not a little kid, they get anxious.
People seem to judge how they respond based on how I respond and if I’m not showing signs of distress, they usually just go on with their business. Sometimes, I’ve started to say to Charlie, “It’s okay to be anxious, we’ve never been here before and you’re doing fine……” I invoke the keep calm and carry on mantra and we keep walking, together. And as one hand checks my bag just to be sure, the phone is there, both eyes are Charlie.
Tags: Airplane, asd, asperger, autism, autism blog, church, disabilities blog, disability, Family, family blog, first responder, Health, keep calm and carry on, lost, mantra, missing child, Parenting, pdd-nos, police
14 opinions for Public Spaces Mean Extra Precautions
Bishops wife
Jul 30, 2008 at 7:18 am
Getting lost is my biggest fear for Junior.
He has a lot of language but most of it makes no sense. He does not understand the simplest of questions. Just reading this gives me anxiety. I do not want to even think about it.
Regan
Jul 30, 2008 at 7:30 am
Does Charlie have travel training as part of his IEP?
Kristina Chew, PhD
Jul 30, 2008 at 7:58 am
He doesn’t have that specifically on his IEP; great idea. The calming exercises his teacher has been working on are helpful for this sort of thing for sure.
Laura
Jul 30, 2008 at 8:31 am
I have this weird panic each time we get on or off an elevator. My daughter loves them and I’m always worried we’ll somehow get separated. I’m not as worried she would get lost this way, but she would be terrified, then freeze up, panic and do nothing but cry. If she ever got lost or was in an emergency situation, the same thing would happen, even though she can tell you her name (backwards - last name first) and how old she is. We’re working on her knowing her address, parent names, etc., but I still worry that in an emergency, none of that would matter.
I read some random gossip bit the other day accidentally when I was looking for something else and read that John Travolta doesn’t take his son out in public because he is embarrassed about his son’s autism. I have no idea if either claim is true (I’d never heard that he had a child with autism before this) but I can imagine that for as scary as it is for us, and for our kids at times, to be out in public for fear of their safety, comfort, etc., how much more so it might be for a celebrity with paparazzi everywhere.
Rebecca
Jul 30, 2008 at 10:01 am
This has been worrying me more and more lately. I have found a website that sells decals for windows of homes and cars letting first responders know that persons with autism live here, and have extended emergency info attached to their car seats in case I am not able to help, but it really scares me. A lot of local EMS and Fire Depts in the area have been taking some special training for interacting with autistic persons, but I don’t know about our town, I need to check. Jeff and I have lately been discussing getting med alert bracelets for L and K with a phone/name on them, has anyone else done that. I have thought about doing the “I have autism” T -shirt when out in public incase we get separated, but Jeff wondered if that might actually make them more susceptible to a child predator, looking for someone to grab.
Neither can answer questions like what is your name, mom’s name , phone etc. L esp has echolalia so if EMS was to ask him ” are you ok” very likely if he said anything it would be “ok”, and he very well might be hurt. They can’t point to what hurts or show me; our ped knows all about their autism, he diagnosed it, but the nurses still ask L and K where something hurts.
Frog's Mom
Jul 30, 2008 at 12:28 pm
As Frog grows this is on our minds more and more. We live in a small town, but not small enough that Frog is instantly recognized even within our own neighborhood.
We found these http://www.safetytat.com/ temporary tatoos and ordered some that say Autistic, Non-Verbal, and have my cell number on them. We planned to use them when we were out of town or going somewhere in a crowd. But after Frog left our yard last month and wandered down the middle of the street, stopping traffic and being rescued by the assistant superintendant of schools who quickly called 911 because she couldn’t get any information from my non-verbal son, I think it will become a regular part of Frog’s attire.
David L.
Jul 30, 2008 at 1:07 pm
Is having a bad encounter with law enforcement only a problem with minimally verbal or nonverbal autistics? I would think that this is not a problem with verbal, high-functioning autistics. Or could the limited nonverbal communication of even high-functioning autistics still cause difficulties with law enforcement. I myself have never been physically restrained.
Kristina Chew, PhD
Jul 30, 2008 at 3:20 pm
@David L.,
I’ve read of some stories in which verbal, high-functioning autistics had some “difficulties with law enforcement”; one was about a man who got upset about something in a store. Law enforcement did not know about his diagnosis. (Am looking for a link to a past post about this.)
Regan
Jul 30, 2008 at 3:49 pm
I share Rebecca’s concern about overadvertising the difference, but I have been thinking about whether there would ever be a standard “prop” that makes sense–the white cane, the mobility device, the service animal–you see those and it is immediately clear that this is a person with specialized needs, and some idea of what it is.
Recently Eleanor learned to tolerate wearing a wristwatch and I think we need to work on wearing a medicalert bracelet–both for the information and because first-responders have consciousness of those. I share the concerns about recall in a real-life emergency and in an accident, she might well not be in a position to recite the info. She also learned to carry a purse this summer so the personal information is kept there, but the next step is knowing when to offer it. Naturally there are other things and I have been looking at what is considered a “travel training” curriculum.
Thanks for the post. It’s not the most comfortable topic, but the reminders keep me actively thinking about the issue and whether we are covering the bases.
C. S. Wyatt
Jul 30, 2008 at 5:54 pm
I manage to “get lost” on a regular basis. My wife relies on my cell phone to buzz me and ask where I am. There’s just a complete lack of awareness that she is no longer next to me until I want to discuss whatever it is I have found.
Cell phones have been great for malls, big box stores, and any place with lots of books.
We’ve had the same numbers since the mid-90s. I’ve never memorized them with any reliability. I know: home, wife, parents. Those are the three numbers programmed for dialing. Very useful tool — just like my PDA, which reminds me of where I should be and when.
Jen
Jul 30, 2008 at 11:09 pm
A particular annoyance I once had with a parent whose child I no longer work with, was that she refused to let us teach the child to produce a card with his personal info. His likelihood of answering a stranger in any form is in my opinion pretty low, but at least if he were to hand over a card, he would be understood. Using his speech, if those of us who knew him, and knew the answers had trouble understanding him, I highly doubt a stranger would have a clue what he was saying.
I think it’s also a case for getting out and getting to know people, as difficult as it can be sometimes. Lots of people in the neighborhood and some of the local businesses know and recognize one of the kids I work with. So, in the event he leaves home unsupervised, or gets separated from whoever is watching him in public, there are lots of people who recognize him. They know that even though plenty of other kids his size may be walking around alone, that this particular one shouldn’t be.
Leanne
Jul 31, 2008 at 8:34 am
I felt lucky, in a wierd sort of way, that Patrick had epilepsy because it meant an excuse (in my strange mind) to put a medic alert bracelet on him. I just added autism to it.
I really worry about him getting lost. I feel lucky that we’re in a very small town and he goes to the local school so most people in the area have met him. But it’s still a big worry.
I imagine I’ll worry even more as he grows up. I could imagine him not knowing how to respond to a police officer and said officer feeling it necessary to restrain him. Ugh.
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