Whose Planet Is It Anyway?

Tuesday, July 10, 2007

A question for parents

When I was a small child, my father occasionally called me "George" because, like the curious monkey of the stories, if I didn't have close supervision at all times, I'd either be climbing a tree (often a very tall one) or darting away to explore something or other.

Nowadays, parents have many more options for dealing with children who have a tendency to dart off. Disabled parking tags enable parents to park near store entrances and get their children to and from the store much more quickly and easily. GPS trackers can be placed on children so that, if they get lost, it's a simple matter to find them again. Children can be dressed in T-shirts with messages like "I'm autistic, not naughty," to provide a brief explanation of difficult behavior in public places. It's only in recent years that these options have been available.

When I was growing up, it was possible to buy leashes for young children to prevent them from running off. My mother didn't want to use one, though, because she was concerned that it might damage my self-image. So she just did her best to keep a close watch on me.

I've seen a lot of discussion on parent blogs about how useful it is to have autism T-shirts, disabled parking tags, and so forth, but I haven't seen anything about how a child's self-image might be affected. So, here is my question: If you are a parent who uses (or who has used) disabled parking, GPS, autism T-shirts, or other similar means of dealing with behavioral issues in public places, how would (or did) you explain it to your child? What answer would you give if your child asked why there was a tag with a picture of a wheelchair on your car, but nobody in your family used a wheelchair? If your child were to read the message on his or her T-shirt (and even a kid who talks very little may be able to read) and wanted to know why people might not be able to tell the difference between an autistic child and a naughty child, what would you say?

This post is not intended as a criticism of parents' choices; I know it's not easy to deal with kids who dart off or who have other behavioral issues. I'm just wondering how a child's self-image may be affected by various means of managing problematical behavior and what can be done to minimize potential harm. (If any teens or young adults reading this post had firsthand experience of wearing autism T-shirts, etc., how did you feel about it?)



  • My aspie kid as a toddler was prone to well, not quite bolting, but definitely dashing off to see something fascinating. Plus, I have some faceblindness (though didn't really understand it as such at the time), and have a devil of a time finding my husband and children in crowds, especially shopping malls and parks. When either of the children wandered off I would have to track them down by shirt color!

    I finally put the toddler in one of those child harness with a leash things. I got dirty looks and once a scolding, but I was often shopping without another adult and this was the second of two children whom I was trying to keep track of. My children's safety was more important to me than what other people thought! Fortunately we needed it for less than a year. I would not have used such past the age of three -- a child's psychosocial awareness becomes too developed and they can be stigmatised.

    Even so, over the next several years the kid would still wander off, and we have a family story about the terrified search for the child who suddenly came up missing around the three-story stairwell of our vacation lodgings, which was right next to a deep mountain lake and busy road. The kid was simply checking out the bicycles parked at the bottom of the stairwell, and too preoccupied to respond to parental calling.

    Some kids just take a lot of supervision!


    By Anonymous andrea, at 10:23 AM  

  • I've avoided the T-shirts although I've been tempted, because that is a 'label' too far for me. I would have loved to have the disabled parking permit for the reasons specified but as I never got my act together I never reached the stage of having to explain my choices [or justify them come to think of it.] I thought the 'business card' thing would be a good idea until I thought about it - anyone who needs the card to have it explained to them isn't the kind of person that would have a chance of understanding.
    I have used 'baby reins' but only in airports because I am outnumbered and very scared [but we didn't need them this year]
    All I can think of here is that we all make different choices for our children [often the wrong ones I fear] but as often as not, a simple explanation is accepted if it's rational - I'm putting these reins on you because you run away and I don't want to lose you. How that sits with a child with language comprehension details I can't say.
    Best wishes

    By Blogger mcewen, at 12:04 PM  

  • Just wanted to note that there are a lot of conditions that might warrant a handicapped placard that don't involve wheelchairs, and I assume the questions would be the same ("Why do we have a wheelchair tag when nobody in the family uses one?") whether it was about dad's heart condition or a kid's autism.

    By Blogger ballastexistenz, at 1:24 PM  

  • Ballastexistenz, Can you get a handicap tag for frying your brain with LSD?

    By Blogger Fore Sam, at 2:02 PM  

  • LSD does not "fry brains".

    However, it's been proven (numerous times via his own words) that compulsive gambling has fried John Best's brain.

    By Anonymous Anonymous, at 2:18 PM  

  • I was leashed when I was little because I ran off and was a FAST little kid (and small for age, so harder to find). It didn't screw with me too bad, as far as I can tell...

    I wear autism tshirts OF MY OWN VOLITION now, but not as excuses, more as political statements. I've been wearing "celebrate neurodiversity" shirts since 2000, but my latest says "Enough awareness. Try ACCEPTANCE" (all homemade). I can't imagine having one put on me as a behavior excuse.

    But I DO have a medicalert bracelet in case something goes seriously wonky with the epilepsy or a shutdown in public. If I had a kid, who would almost certainly inherit SOMETHING of mine, they'd have one too. More discreet than a tshirt (and xe may end up with a tshirt or 2, but may not. Not till xe was old enough to talk to about whatever xe inherited) but still THERE to explain things and get ahold of ME not some random ER or some such. (heck, my cats have my outdated medicalerts on their tags to save me a touch of cash and to make sure they're returned to me, too...).

    By Blogger Kassiane, at 2:41 PM  

  • Duncan is a dasher. (He's dashing too but that's not the issue here!)

    I tried the toddler harness when he was 1 or 2, but he resisted moving when it was on. I used the wrist strap a few times. I don't know if it damaged his self image. It was more a safety measure, and he was very young.

    I have a disabled parking badge, but don't use it too often. I have also put an NAS sticker on our car's rear windscreen. I wouldn't put a T-shirt on him with an autism message, because he's too young to consent to it. I have thought of getting some sort of T-shirt for myself though.

    He now uses a Major buggy which marks him out very obviously as somehow different, since not too many 7 year olds use a pushchair. he chooses when to use it, and he enjoys sitting in it. Sometimes he uses a coat or something to block out the world for a while. Once when we were out, he was wearing a top hat from Lady's magic set, and he pulled it right down over his face when he felt like it. He looked great, especially when his gorgeous face was on show. He got lots of compliments from old ladies that day!

    I don't know how much he understands about how he is different to other children. I use the word autistic to him and to his siblings to explain why he likes things a certain way, so he hears it, but I'm not sure if he associates it with himself. I just deal with things as they come, I suppose.

    By Blogger Sharon, at 2:54 PM  

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    By Blogger Fore Sam, at 2:57 PM  

  • I held my son's hand when walking in public and we still hold hands in parking lots and intersections. He never bolted because I controlled him. I might have "smothered" him by not letting him walk alone but I just didn't trust the situation. When he was a small toddler, I bought a wrist leash but didn't use it because it didn't work and looked painful. I kept him in a stroller til about 3, until he started pulling it apart.
    I don't see the point of identifying children to strangers. I'm too busy for that.

    By Blogger HortenseDagle, at 3:05 PM  

  • As much as I love my own collection of autism t-shirts (as symbols of pride and visibility) I hate seeing kids being forced to identify as autistic in order to shut up busybodies. I want to see children growing up with pride in their own culture and identity, but that means he or she gets to make the choice.

    The fact that this is even an issue shows clearly the level of discrimination and misunderstanding autistic people face daily. No one would worry about letting others know that a child is blind or deaf. But then no one (hardly) would ask a parent, what's wrong with your (blind) child? Can't you keep him from running into things?

    As far as parking spaces and such, when are people ever going to learn to mind their own business?
    I've seen plenty of people walk into WalMart and then ride in one of the carts provided for people with mobility problems. Boy do they get some harsh looks and comments from others who are just so certain that no one could actually need these if they are able to walk in from the parking lot. I guess these critics never stop to think they may one day need to make use of such accommodations themselves.

    A favorite all purpose (non label bearing) t-shirt:
    Keep Staring--I Might Do A Trick!

    By Blogger Bev, at 3:43 PM  

  • I used to run off as a young child. My older son (both of us on the spectrum) is pretty good at staying with me. I usually know what he's going for when he does wander off (post boxes, traffic light buttons and anything with numbers on are good bets) and luckily he's not too fast for me to not be able to catch up with him.
    I know I should just bite my tongue, but ForeSam reminds me so much of someone. The petulant stomping, the "look at me" behaviour, the inability to argue rationally, resorting to the metaphorical equivalent of throwing toys about. But I just can't think who. Wait a minute, yes I can, it's my little 22 month old younger son when he's not getting his own way.

    By Anonymous bullet, at 3:48 PM  

  • Ezra has only this year allowed me to hold his hand. In the past I had to rest my hand on his shoulder. We tried a "gait belt" for awhile, especially if he dropped to the ground and resisted moving. He got too big for a stroller before he could walk very well. We got a BIG (Maclaren) stroller that helps. My BIL asked at a recent family gathering if Ez likes being strapped in. good question. I think he does feel a certain familiar comfort there. I am simply avoiding him running out the door, as can( and has) easily happen at such an event. In extremely loud and crowded scenes, he is likely to go to sleep, so it makes that easier to manage too.
    I would wear a message T ( I like, "You say Autistic like it's a bad thing") but the only one I considered for Ez was "I do all my own stunts".
    (Bev! I know you're a big fan of t-shirts, but that one... keep staring...) how funny!!

    By Blogger Suzanne, at 4:01 PM  

  • We have a parking placard. We'll probably tell him the straight-out truth: traffic is dangerous, and the placard allows us to keep him safe. At some point, we will probably discuss it with him, adn whether he feels it is needful; it has to be renewed every 5 years anyway. If we find that the meltdowns and bolting continue, we will porbably discuss that behavior with him, and the fact that such behavior, whatever the reason for it may be, necessitates we take steps to help keep him safe. We'll probably also discuss the idea that being "disabled" isn't a criticism, just a fact that needs to be addressed when safety is a concern.

    We actually talked about it a little when it appeared in the car, because it was new and is in his line of sight, so it bothered him. I just told him it lets us park safely, especially in strange places, where he may be uncomfortable. He hasn't said anything or seemed interested in it since.

    By Blogger Joeymom, at 4:30 PM  

  • From before he started school until he was in high school he had a T-shirt (obviously not the same one, he had 3 different sizes over that time) that said "Not being able to Speak is not the same as not having anything to say". As well, he has a Medic Alert bracelet that he wore full time until he was in high school, after that he wears it when he runs, goes places, but did not usually wear it at home or at school. It was basically an ID bracelet with his name, phone number and address as well as identifying him as "non-verbal autistic". Finally, just last week, I ordered him a new RoadID bracelet for running (mostly) that says (along with his name, address, phone #) "I'm autistic. Atypical Communication. If needed try written words instead of speech" (He picked the final wording)

    How is his self image? - in his (12 year old, year 2000) words:

    "Autism the boy is Alex Bain

    Autism is happy and sad

    I like Autism

    Autism makes me different from my friends

    That's OK"

    If you ask him about his autism, the first thing he will tell you is about his speech. That to him is what autism is most about and what makes him most different. I don't think that's because of the shirt or the bracelet. The Autism shirts he wears now in one case he okayed before I bought (an Autism Diva design) but in most cases he had a hand in helping the Autism Diva design for him.

    By Blogger jypsy, at 5:38 PM  

  • I'm really cognizant (or try to be) of how Adam might feel when he gets older of all these things. I have to welcome the possibility that he may want nothing to do with autism activism, may go through a stage when he wants nothing to do with his label, and so forth. It is his RIGHT of passage.

    Conversely, I consider what it is I stand for -- dignity, respect, and making others aware of bias and so forth. I do not put T-shirts on Adam. He is too young and it's my activism for now.

    I know people who have used those "leashes" and "hand leashes" and I remember buying one when Adam was really young, thinking that I might have to use it someday. We haven't. It was all about his safety. I once remember someone giving a speech at how mortified that they saw a kid on a leash. But imagine a darting child in an airport! Henry, who has four other children, used those hand leashes for that very reason.

    I believe that a child can have a card (think of it at the airport -- I would have to have a document with an official diagnosis and a letter explaining why Adam can't answer the questions of customs officials when Henry isn't traveling with me. Imagine them asking him "is this your mother" and his non response!! I think that there are pieces of information that can assist with empathy and understanding in similar situations.

    But activism, again, no. I will not have my son in one of those t-shirts (there are many really funny and interesting activism shirts now for sale on various sites) until he says to me on a keyboard or with his voice, "I want to wear that." Otherwise, I impose my voice on him. I do not speak for him. I will stand with him.

    By Blogger Estee Klar-Wolfond, at 5:43 PM  

  • My Mom belled me when I was tiny. She affixed bells to my orthopeadic shoes. See, I did not walk till I was three. I actually remember learning to walk because of the therapy and all.

    Anyway, I did not move fast....but move I did. I remember going on the sub my dad was EX-O of and going walkabout with those bells echoing the halls. I ended up in OPS and the Captain put me in his comm chair. My mom freaked but OPS just raised my dad to tell him they had me.

    I went there because the green tactical lights looked pretty in the dark.

    If I had a child I would bell them and probably leash them in busy places regardless of NT or AS in them because it would help me stay sane. I would let the child tell me when they were mature enough to do without a leash or whatever. I stopped wearing bells when I went to school.


    By Anonymous Anonymous, at 6:32 PM  

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    By Blogger Fore Sam, at 6:32 PM  

  • Hi ABFH,
    I blogged about the tee shirts recently...I hate them. I think the shirts are a good excuse for parent's to stop parenting their children.
    Yes, behaviors can get out of control in public situations, but that is no excuse to slap a tee shirt on your child to avoid correcting the behavior.
    Just my opinion, of course.

    By Blogger Mom26children, at 10:15 PM  

  • My parents had a harness thing for me when I was little. I'm guessing it was because I would very frequently bolt and climb things or hide under things, etc., and because I seemed to have no sense of danger. I would go straight up trees if I saw them, ditto for shelves and clothing racks in stores.

    I never saw the "reins" as a bad thing, though; they were just sort of an accessory for going out, like a stroller or hat.

    By Blogger AnneC, at 10:42 PM  

  • My older daughter was the sort who would run off, as well as completely ignore words like "stop." We put bells on the shoes of both our girls when they were toddlers, but only with the eldest did we have to resort to other measures. Especially when I became pregnant again and just couldn't keep up. We'd tried the wrist bands at first, but she got out of those easily. We then tried a harness.

    She LOVED it!! To this day (she's now 14) she actually remembers her joy when we'd make her "fly" by grabbing on to the back while she stuck out her arms like wings. It got so that whenever we went out, she would go and get the harness herself and ask to have it put on.

    By Blogger Kunoichi, at 2:39 AM  

  • I bet people who disaprove of the use of toddler reins either have never had kids, or if they did, had normal or docile type-kids. Some toddlers definitely need them, many don't.

    I've never seen anyone of any age wearing any T-shirt with any message about autism on it. I live in Australia. I suspect that kids who are "a handfull" often don't get taken out much on outings or to the shops.

    By Blogger Lili Marlene, at 6:14 AM  

  • I am lucky I only had one child. I didn't work, so it pretty much was just constant surveilance.

    Ben knows the gifts that go along with autism, but has never asked for a shirt. I don't know how much he identifies with the label, but he sure gets ticked if they say something negative on t.v.

    By Blogger r.b., at 7:50 AM  

  • Bizarre as this sounds, the thought never even occurred to me until now.

    Other than fencing in our backyard to make sure our son had a safe place to play, we've never used anything else.

    We've been fortunate in that Little Guy didn't have any physical issues (so no need to used specialized parking) and isn't a "darter".

    I'm not against them, mind you. We've just never had a need.

    And frankly, I've never given two sh*ts if people in public think his behavior is odd. He has as much right to occupy space as they do. ;-)

    By Blogger Attila The Mom, at 10:07 AM  

  • Someone gave us a harness for Patrick but we never used it. It just made me feel too much like I was walking a dog instead of my child.

    He, until recently, was a runner, had impulse control issues and was unaware of any danger around him. It was really difficult but we muddled through.

    I try not to explain his autism to strangers. As someone else said, he has a right to occupy space as much as anyone.

    We basically kept him in contained areas, held his hand at all times when out and about (no exceptions), and did a lot of chasing. He rode on dad's shoulders a lot.

    I wouldn't put an autism t-shirt on him. He has a medic alert bracelet because he has epilepsy but we chose not to have autism engraved on the braclet. It is in his file if a medical professional needed to call medic alert to get information.

    By Blogger mumkeepingsane, at 10:36 AM  

  • Thanks everyone -- this is a very interesting discussion!

    By Blogger abfh, at 1:52 PM  

  • I wish more people woulD use leashes- I've gotten tripped twice this week by free-range kiddos, and it HURT. I always tell people when I see them using those "Way to go!" Supervision is great, but if you've got a fast kid, you use what you need to. :)

    (Oh, and I would NEVER use a harness on a dog unless I *wanted* them to pull something. ;P That's what martengale collars are for. :P)

    By Blogger Cait, at 5:12 PM  

  • We describe our son as a 'bolter' and have occasionally had to chase him through shopping malls and parking lots. We have always help his hand or kept a close watch on him. We had to fence the yard (or rather, the state did - thanks, NY), but it has never occurred to us to seek out a handicapped placard, and we would never want to leash him.

    Recently, his kindergarten class took a field trip to a local amusement park. A small place with only kiddie rides and an animal petting zoo; completely fenced in, but with a slow-moving train running unfenced throughout the park. They asked our permission to harness him, and indicated that our refusal would mean that he could not participate in the trip at all. My concerns were a balance between his personal safety (which is obviously paramount) and his feelings on the subject. He's non-verbal and I couldn't get his opinion, but my thoughts were that just because he can't communicate his feelings doesn't mean that he doesn't have them. Just because we can't hear the story of his humiliation at being the "kid who needed a leash on the class trip" over dinner that night doesn't mean that he doesn't feel it.

    And while I like the idea of giving him the option to wear autism pride t-shirts, I want them to be because he is proud of it, and therefore must wait until he is able to choose them. A t-shirt that advises strangers that my child is autistic and was not, in fact, raised by wolves (while funny) seems entirely pointless. I don't owe those people an explanation. Let them stare. He's a beautiful child, after all.

    By Blogger Heather, at 11:18 AM  

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