Always Looking for a Little Understanding
August 13, 2008 by Kristina Chew, PhD
Filed under Health
In the ocean this morning with Charlie, I noted a boy about his age looking more than a few times in our direction. Charlie’s a super swimmer, and clearly comfortable in the water, and still has to have someone out there with him. This morning it was me. The waves were perfect—big but soft and just a bit cold—and Charlie was vocalizing his excitement, though not in words. After the other boy had looked in out direction a few times, I smiled and said, “Charlie’s autistic.”
“Yes, my friend has a brother who has that,” said the boy. I asked how old he was; the boy said he was ten, same as himself, and that “all he does is play video games and beat people up.”
“My son doesn’t do either of those,” I said, quickly, and glancing around to see where Charlie was swimming off to. “I mean, a lot of kids like to play video games, but not the beating people up.”
The boy was in earnest and added, “He’s mainstreamed, too. He’s in fourth grade. They had to hold him back a year.”
At that point Charlie was clearly swimming beyond the lifeguard’s orange flag and I hurried off. The boy and another boy, both on boogie boards, floated several times near us and in and out wherever Charlie was going.
The beach is big and the waves themselves are loud. I’d say it’s a place where there’s room for everyone, “whatever” they are (on the first day, we realized that another family on the beach had an autistic son, an adult). There’s still rules—those orange flags to swim between, and not swimming near the jetties or near a fishing pole (Charlie attempted to do both this morning). One reason we like to vacation at the beach is because it is a place where Charlie can pretty much do what he likes a lot, get in a lot of exercise, not have to worry about waiting in lines for rides as we would at an amusement park. Being able to rent a house rather than a hotel room means there’s plenty of room for him to run around and stomp (and we have our own washing machine…….). Souvenir shopping and going to arcades aren’t of interest to Charlie, and the ocean and sand are pretty much the main attraction.
So, we try to seek out a place where Charlie can be himself, in public spaces too, and get ready to play the parent activist at certain moments when a boy taller than his mother who speaks partially in sounds rather than words attracts attention and can be considered disruptive. The August 13th Associated Press has an article about the disruptive behavior of autistic children striking a furor; some cases of autistic children—Adam Race; Alex Barton—being excluded are noted. Is there a limit to how much “understanding can be gained in grocery stores, churches or other public places”? If parents go out of their way to make accommodations and preparations when taking a special needs kid out in public, maybe these are first attempts to help a child learn to be in public places, and to seek the beginnings of understanding.
Maybe—at least they’re ways to get a conversation about autism going.
I’m glad Charlie is having a good time at the beach! And I hope both you and your husband are, too!
As for disruptive children, I had to buy the boys new shoes yesterday. The young woman helping us is awesome, has been through this twice with us recently, because their feet are growing about 2 sizes in 3 months! As we were leaving, my 3 year old NT son threw a major tantrum, on the floor screaming, because I made him take off some Jibbitz and put them back. I looked up and got the first dirty, disgusted look ever from an elderly lady. I was trying not to laugh, as it was so comical, as was the tantrum. I couldn’t pick him up and carry the shoes, so I leaned down and said firmly that he would get a time out and no TV the rest of the day if he didn’t stop screaming and get up and walk out with me. He got up, wimpering softly, held my hand and I flashed that lady a smile as we walked out!
I get compliments all the time on how well mannered my 7 year old is, and he is really well mannered! It is my 3 year old NT who gets the “looks”!
Smiles under stress are key around here!
I have always felt that if my son can learn it I will teach it to him. He was able to learn how to behave nicely, so he has learned. I would stack his behavior against most any NT his age.
My kids are very well behaved–no meltdowns–but also very quirky with odd facial expressions, vocalizations, hand flapping, etc., so we get “looks.”
I just read that AP story and am disgusted with the comments of the uncle who says that institutionalization is a good thing. Sure, under *some* circumstances. But not just because someone’s noise is bothering you in a public place. I’m deeply offended by gross, furry, shirtless, overweight men, but apparently, their assault on my eyes is completely acceptable while an autistic child’s assault on someone’s ears is not.
Mockery aside, I think that medicine and modernity these days keep us too far away from reality. I was just reading the original manuscript on Parkinson’s today, published in 1817. People used to a live a lot closer to the realities of life than some of us do today. It’s not all pretty or clean or perfect or just the way you want it, and if you don’t like it, that’s too bad for you. You can’t lock people away in institutions any more just because they’re interfering with your sensory peace or your notions of how people “ought” to behave.
It’s good to have places one can be away from the world and not have to wear a “social face”. I’m glad Charlie had a good time.
Would you consider commenting on my blog, listed above, on my idea for getting picky kids to eat their vegetables? And do you think it can work?
My family is making some tough decisions right now as my grandparents endure failing health and fading mental abilities. One had a stroke this month and the two others have had major heart surgeries.
In many ways, this is the same situation the families of adults with severe autism face. Some stroke victims don’t speak clearly (or jumble words), they have bursts of anger, and need supervision.
My mother is doing all she can for her mother. My aunt cares for both paternal grandparents. But, there is a limit and potentially dangerous problems keep arising, from falls to “wandering” impulsively.
No one I know wants to admit they need help. The institutionalization comment might reflect a person who does need more help than a family can provide — we never know the circumstances. It’s easy to condemn the notion of institutions since many were and are horrible places. But, so are senior care facilities.
When my wife’s grandparents were alive, the last year they were together in a facility. It was heartbreaking, but the constant attention was necessary.
I have seen families struggle, torn apart by autism in teens / young adults. You might think the parents didn’t care enough to stay together, but you’d be wrong. In every case, one thought a group home or other arrangement might be better than keeping the young adult home.
An “institution” can be a group home, a “limited oversight” facility with apartments, or the horrible places we imagine. Group homes might make sense and even save some families.
I met wonderful parents in Orlando at the ASA who had a loving relationship with their son, but he lived in a facility. His violent outbursts had become too much for them — he was taller and stronger than both. They moved just for him to be in a special place, where parents could visit and be involved.
I wish such choices never had to be made… but humans are fragile creatures who eventually need assistance.
{Wilmoth-Williams recalled one day after Sunday school class, when Zach licked several trays full of Oreo cookies set out for students. He was asked to find a different class.
“We’re talking 50 to 60 Oreos. He didn’t understand the effect it had on the entire class,” Wilmoth-Williams said. “I had to make amends. I had to volunteer.”}
EXCUSE ME!!!! Part of ABA when we were in it was to go to seminars. And the ABA therapists one day told us that her teenage kid got up at the restaurant and took someone elses drink at another table. She thought it was OK and got them another.
We’re not talking about flapping, rocking, quiet scripting. Those are behaviours that bother nobody. Get a few looks, but most people in today’s world recognize them as autism and let it go.
But this “my kid is bad – screaming, melting, hitting” but it’s OK, b/c it’s Autism… is WRONG. What are you going to do when they’re teenagers??? That’s obvious, you’ve posted stories of where caregivers are harmed.
If you can teach a 2 to 4 year old child basic social skills, you can teach any child with Autism the same skills. If it’s a sensory issue, then I recommend you don’t take the child into a situation where there’s going to be issues until you’ve helped them master the sensory issue or go on off times when you don’t disturb others to get them use that space.
There are reason’s for correct behaviour in society. It protects all. Also, people pay good money, especially in an economy where money is tight and they expect to enjoy that outing, not listen to some kid scream. And that goes for us too….. we don’t wish to listen to our kids nor others “melt” when we go out for supper.
That includes ALL. I don’t care if your kid is NT or ASD or or or or…..
B/c if a child isn’t taught, very young not to hit, harm, melt…. they will be placed in specialized classrooms, meds will be demanded to protect the caregivers, and even institutionalized.
I will not be held hostage by these kids.. but then again… I’d put mine up against most NT kids anyday for good behaviour and we’ve been complimented on it when we’re out and have gotten “looks” when it’s found out they have Autism… b/c nobody noticed the quiet flapping/scripting.
S.
Yes, they’re not “socially appropriate” behaviors (the licking of the Oreos); what if the article talked about these not as “oh the horror of it,” but as, here’s something we need to start working on. Here’s something we can work on.
I could completely see TH doing something like the licking the Oreos, but then I can also completely see his receiving some major consequences as a result (loss of his favorite privileges, etc.). We’ve always operated on that principle with our children from the time they were able to understand a consequence (as in, from about age 18 months in general). Right now, in fact, I can bring an ensuing meltdown from our youngest, who turns two on Monday, to a complete halt with his version of “time out,” which consists of my simply standing there with his facing me as I count to 10. It’s incredible how well it works–he calms, he even sometimes will count with me at the end, and the meltdown is over. It’s not a technique that would work with everyone, and I’ve had to use others with our other children, but as I’ve said before, we don’t care what our children are, we expect a certain level of behavioral compliance. If they don’t do it, we take them away.
We were at the park tonight and Casey was singing to whatever his Ipod was playing and swinging. The singing was loud, and I almost told him to quiet and then I thought, why, people will stare whether he’s singing loud or not. So, he had fun, and I stared at clouds in the twilight and enjoyed the moment….Oddly enough, I discovered later his Ipod wasn’t even on! Must be nice to always have a song in your heart!
I think tolerance for “disruptive” behavior is partially contingent on what TYPE of public place it is. Loud vocalizing, running around, etc. are fine at the beach, but what if an autistic (or NT) child is exhibiting the same behavior at a restaurant or movie theatre?
I don’t see why a kid having a good time at the beach should bother anyone–no reasonable person heads to a public beach expecting quiet.