Things Aren’t Always As They Appear To Be
To the casual eye, my son is not disabled. He walks fine (maybe with a skip unbefitting a 10-year-old boy in quest of coolness); he talks (though listen closely and you’ll note that it’s the same words over and over and the initial and final sounds get slurred ); he carries two bags weighed down with groceries. He walks into school with an LL Bean backpack and wears a blue fleece coat (no matter that the only things in his backpack are a well-stocked lunchbox and a worn red folder—we are looking forward to the day when Charlie has a worksheet for homework). (And, he has the fleece’s hood pulled so far over his head that it is likely he can’t see anything except for what is directly in front of him.)
These are some reasons that people call autism a hidden disability. And sometimes that hiddenness can cause some serious confusion, as James Mulvaney, whose son Danny is 20 years old and tall, writes in The Autistic Terrorist: A True Nightmare. Five police cars appeared when Danny “was recently in a tussle and a well intentioned civilian called 911, reporting a felonious assault.” 8-year-old Matty Capabianco produced a $300 iPod after a family trip to the mall: “‘We brought it back, but I had some explaining to do,’” Matty’s dad, Police Officer Michael Capobianco, noted.
A year and a half ago, a police car pulled up beside my car. Charlie, upset over his grandparents’ leaving, had been flailing so fiercely in the backseat that I had parked and was hanging on to him.
“Autism,” I said to the policemen as I handed over my driver’s license, as they requested. Then I, very literally, burst into tears.
“Ma’am, why are you crying?” asked one officer.
(I really didn’t know what to answer; Charlie was still crying very, very loudly.)
Mulvaney notes that Officer Capabianco and parents, educators, and “security professionals” all recently gave a presentation on to “the leading security directors on Long Island” with the title of “First Responders and Autism.” He writes:
As part of my “day” job I provide consulting services to corporations and allied governments on methods to combat global terrorism.
I believe that the war against global terrorism is absolutely essential for the survival of civilization.
However as we talked to security guards this week I realized that the biggest danger daily danger is not a crazed fundamentalist but an autistic kid who is having trouble being understood. It is more likely that my son could be mistaken by a mall security guard as a criminal and that an attempt to detain him could turn bloody than an al-Qaida operative would visit the Roosevelt Field Mall in Garden City, NY.
The “autistic terrorist” in the title of Mulvaney’s post is (as he writes) what those who are “not in the know” may wrongly assume autistic person to be, and I have to wonder how representations of autistic persons that emphasize violent and disruptove behaviors, and the need to end such a devastating disorder subtly (if unintentionally) contribute to such misperceptions. If autistic persons are represented mostly as having difficult behaviors, when people see (for instance) a child having a tantrum, how quickly do their minds think “autism”?
The policemen nodded sternly when I stammered that Charlie was upset because his grandparents left—-and I knew that this was not the answer they had been thinking of.
8 opinions for Things Aren’t Always As They Appear To Be
Marla
Nov 21, 2007 at 12:29 pm
There have been many times I worried people would think we were harming our daughter while she was having trouble in public. Thankfully nothing has ever happened. I do agree that since you can not immediately “see” autism it can be very hard for people to understand.
ange
Nov 21, 2007 at 12:30 pm
I really felt your pain regarding the police officer story. I can hold it together when Bubba is in full meltdown mode. We are both outside of our bodies. Him floating without boundaries, not knowing what to do or aware of what he is doing. Me almost like a robot, my movements and voice very monotone and even. But if someone breaks in, even with a simple look or an “Are you OK?” or worse “Someone needs a spanking!” then I am painfully thrust back into myself and the feeling comes back, emotions flooding to the surface. Sometimes it’s anger, or exhaustion, or saddness, or worthlessness.
My kids don’t fit the stereotype of “autism” so I have no one word to say when I need a “get out of jail free” card. If I say “autism” I get the “autism diagnoses are handed out like candy” look. I could say “agnesis of the corpus callosum” or “developmental disability” or a slew of other things that mean nothing to an onlooker. If I say nothing, I get the “your kids are out of control [or weird]” look. I tend to say nothing because I don’t think I need to label my child for them. I only explain where they need some modification and understanding if they are people we will see again and again. But sometimes the child in me screams… when you see it enough, hear it enough, feel it enough… sometimes you begin to think it’s true, that you really are an incompetent parent with out-of-control spoiled brats. What’s worse than thinking that of course is letting that way of thinking permeate my children.
Sorry. It’s been an off month.
Kristina Chew, PhD
Nov 21, 2007 at 1:17 pm
ange, that was breathtaking—”anger, or exhaustion, or saddness, or worthlessness”: yes, that’s what I’ve felt, all at once. And meanwhile you just want to comfort an upset child and get home…….
Our month has been “on and off” and here come the holidays.
Beth
Nov 21, 2007 at 5:03 pm
I am pretty good now at just disconnecting myself from others’ opinions when my son does something in public but it is a conscious decision to disconnect. The momma bear in me wants to protect my cub from scorn and funny stares. Because he appears “normal” to the average person, I know that they just think he’s a spoiled brat and that I’m an indulgent mom. I have to remind myself that I have 3 choices: 1. Stay home (not an option) 2. Hand out pamhlets of apology with a description of Asperger’s (also not an option) or 3. Accept that a lot of people we encounter will misunderstand him and just be glad that those whose opinions matter most to me know that he’s a great kid who can have some not so great moments sometimes. That’s my only real option.
Regan
Nov 21, 2007 at 6:38 pm
We once, thank goodness only once, in the early days a situation where Eleanor was having a memorable meltdown in public and someone called security. I’m sure to the casual observer it looked as if my husband was either hurting or trying to abduct a very distraught, uncalmable, and non-verbal little girl…when what he was trying to do was calm her down and take her out of the store. I was there to present IDs and talk to the guard but it was kind of scary, and I don’t know how this would have turned out otherwise. For a while afterwards we both carried a lot of those “My child has autism” brochures around.
Another reason that I would like to see more law enforcement and first responder training, as well as student training in how to respond in return, is the regrettable situation that I read about from time-to-time, where an older ASD kid really needs help because of being lost or ill or just trying to make his way home and being ends mistaken for someone committing a crime or acting “suspiciously”.
We had such a situation around here a time back and to make a long story short, a significantly challenged sick, cold, and lost teen ended up manhandled and prone restrained because the officers didn’t know how to communicate effectively with him and his behavior was confusing and contrary to the compliancy expected. It just escalated. I felt for the young man, and also to a lesser extent for the officers who I am pretty sure were at a loss for how to deal with the situation positively.
amy
Nov 23, 2007 at 4:32 pm
Happy Thanksgiving, late, Kristina.
I wonder if one reason the representations emphasize the violent/disruptive behavior is that they’re genuinely unusual in a nonautistic world. I do wonder if, living with autism, you simply become inured, after a while.
We had a friend, her mother, and her two children over for Thanksgiving, and it was a fiasco. The older girl, who has the Inky Bottomless Stare, froggy gait, no social play, no greetings, and little language at 3.5, was a freaking tornado with no interest in her little brother unless he had something she wanted, and then she knocked him down. The most obvious difference between her and my daughter wasn’t in the language or the social connection; it was that she couldn’t be left unsupervised, because she was destructive and violent in ways that even much younger children are not. I regularly have toddlers over here, but they don’t start beating up the vertical blinds, slapping all the magnets off the fridge, or scattering newspapers everywhere. Usually they’re pretty well-behaved, and destruction’s limited to tearing leaves off plants.
My friend’s obviously used to wolfing her food because the child climbs on her, hits her, howls and cries, and really can’t be left alone just because Mama needs to eat. (It’s the same story with the kid down the block.)
I got out my daughter’s bouncing hop-a-long ball, the kind you sit on & bounce, and she liked that, but it provoked a sibling rivalry that ended up with the little bro knocked down a lot. My friend ended up having to take her family home early. A tremendous quiet and orderliness descended.
Yeah. If you’re not used to living with it, I think it’s the violence, yelling, and destruction that stand out in relief. And they’re what matter. There are other kids I know who are quite verbal, are snappy with the P2P connection, etc., but are just loud homewreckers, and again, that’s the key feature I notice.
Reader’s Question About the Police
Nov 27, 2007 at 4:08 pm
[…] Mulvaney recently wrote about an incident involving 20 year old son Danny the police; he recently gave a presentation on first responders and autism—-stories like the one above […]
NJ Bill to Promote Autism Training for First Responders
Jan 24, 2008 at 5:59 pm
[…] upset—and to cry out, or yell, or seem overly physical—-sometimes in public; it has already happened that a police car has asked me—when Charlie was having a very difficult time in the backseat […]
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