In a letter in the January 28th Vacaville Reporter, Amy Fox, an autism mother in California writes:
Autism isn’t the type of disability that someone can see right away, so people need to be aware that there are children who look normal but are challenged all the same.
She notes her autistic son, Michael, is “very social”—-which “makes it even more difficult when children ignore him or call him names.” In the library, he speaks loudly and “gallops back and forth,” and he keeps jumping up and down when he is supposed to be sitting. “I can’t take him to many places, such as the library, because he doesn’t understand that he needs to be quiet when we’re there,” Fox writes.
Fox’s words really resonate with me: How often have I noted a quizzical expression on some onlooker’s face when Charlie, at 9 1/2 years old barely a few inches shorter than me, picks up the packs of sushi from the display case and presses them against his nose? Encounters such as Fox describes in the library are why I used often simply to say “my son has autism.”
Now, though, I have started to wonder just how “invisible” Charlie’s being autistic is. He is tall and strong; he does not have a lot of speech, he often simply utters streams of syllables. He still makes noises and jumps up and down in public places—-often, though, only when we first enter a place; I think it is Charlie’s way of acclimating himself to a new environment. After a few minutes (and a few, a very words, reminders from me), he is learning to be quiet and not to run up and down the aisles.
And when people look our way, I smile and address my words to Charlie.
[...] I know what Stagliano is talking about. I do my best to chronicle my family’s version of the “autism reality show” every day over at Autismland; I put up with a lot of stupidity from a public still achingly ignorant about my son’s kaka upon not so obvious disablity. I get the same thrill to see Charlie’s big brown eyes every time I look at him, even on the days that start to verge on “autism tragedy” and certainly on the days when the good times are rolling, and just as when I first caught sight of him, still wet and just delivered, over my drawn-up knees on a hospital bed and wondered, what caused this lovely boy to come to be? [...]
Jennifer, that’s a great idea regarding filling out the comment cards—thanks!
Another thing I have noticed is how, when people detect “something different” about Charlie, they look at me: to see if I’m different too? to figure out how to react? So I do my best to “model appropriate behavior”—talk to Charlie, just go about our business.
I should add that I’m glad people eventually address him directly, because he hears much better than i do. I am hearing impaired, and despite my powerful hearing aids, there are times when the acoustics are just awful for me. Amigo becomes my “translator” then. We are quite a pair!
This rings SO true. I just had a medical professional tell me (also the mother of three on the spectrum) that her friends with obviously autistic children seem to get more compassionate responses. Unlike Downs, or an orthopedic impairment, our kids often are misunderstood because of preconceived expectations that just don’t fit the situation.
I’ve found specific positive feedback can help, though of course it’s a drop in the ocean. For instance, my mom and I have taken to filling out comment cards when a waiter or waitress speaks to my brother directly, is especially patient, etc. We make sure to specifically say, for instance, “The server rephrased his order to make sure they understood his speech” or “He greatly appreciated being addressed directly as ’sir.’”
Daisy –
It’s good that they respond when he starts answering them directly. When I go someplace with my blind friend, sometimes people will continue to address me when he’s the one who should be asked, and is in fact answering. (There is one restaurant I will not be frequenting until at least July, because I swore it would be at least a year before I went back there, due to the way the waitstaff behaved. There is another restaurant I figure I’ll go to as frequently as I reasonably can, considering its location, because the waitstaff were so good when I went there with him earlier this month.)
I’m TWENTY FOUR and have people who don’t talk to me, they talk to my boss/adoptive dad (who is ALSO autistic but less obviously so). I look young but STILL. He usually says it’s rude to talk about people who are right there, and that I’m autistic not stupid. And that they can whisper all they want but I’ll hear them from 20 yards.
It’s the flat out staring that annoys me. I wring my hands. Woopie friggin doo. This offended some little (dirty coated, running around the mall alone)8 or 9 year old who couldn’t stop staring on the escalator. She fell at the bottom. Bruises: a common comorbidity to the terrible affliction of rudeness.
We run into people who son’t talk directly to Amigo — because he’s blind. Fortunately, he asnwers them directly, getting the conversation going.