Autistic, Asian, Different (#231)

In contrast to yesterday when the three of us went barely further than the front sidewalk (invisible under 24 inches of snow), today Charlie (home on a snow day from school) and I were out and about (Jim went off to work): Two walks and trips to Target and for groceries. We were simply happy to be out for the first walk, Charlie stopping to stamp and scrape at the ice and to look at the icicles hanging from the rooftops.
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Ennis asked about one of my examples of the bittersweet of autism, “the stare of some six-year-old girl and the too-quick whisper of her mother.” He inquired, “What is the most polite way for the parent of the other child to handle this? I ask because I sincerely don’t know. I don’t like the whisper because it makes something shameful of Charlie, which he is not.”

I would have thought about this question all day in any event; as it happened, on outings #2, #3, and #4, Charlie’s difference, disability, the fact that he has autism, brought out various responses wherever we went.

At Target (#2), Charlie was all smiles pushing a cart past the DVD section from which I used to have to coax and drag him away from. He got antsy as I dawdled over choosing Valentine’s Day cards for Jim and his teachers (“How about this one?” “Diss wahn, yess!” “Or maybe Dad would like a funny one.” “YESSS.”) We got into the Express Lane, where I said “Put the toothbrushes ON the conveyor belt. Here, honey! The conveyor belt. And the card for Dad.” Did the woman behind us–sensing there’s something about Charlie–take a subtle step back? The clerk was Charlie’s height and spoke deliberately and with an interesting tone, and I wished her well as Charlie headed for the door.

Charlie had a big lunch and started off his ABA session very silly, grabbing the therapist’s coat and running around with it. He did very well on his programs and we went out for a second walk (being-in-the-world #3). We passed Charlie’s babysitter’s house and her daughter called out “HI!” to us and Charlie, as I prompted, said “Hi.” We passed other children who we have often ssend; they kept throwing snowballs as Charlie called out “HI.”

They are kids and have plenty of their own going on, but it made me think of Ennis’ question and of how what I dislike the most is when a child or anyone stares at Charlie and then turns away, acts as if they have not seen him, says nothing; when the response is silence. Words like “retarded” or “different” or “a little slow” or “something wrong” I can respond to with my own words (and I hope Charlie will someday with his own). But the silence and the faces and backs turning away are the worst, as if there is something taboo about Charlie–something so different–that it cannot be acknowledged.

How we respond to these encounters is very individual and is based perhaps in our individual comfort zones. Just by taking Charlie out in public and seeing people and teaching him to handle himself in such settings is advocacy and, at this point, I do not always feel I always have to put a name to it. The goal is that Charlie stays calm and that no one’s dignity–Charlie’s, the stranger’s, or mine–is disparaged.

I’d rather invite more people to join the Autism Hearts Club than flame out with fighting words of anger and defiance.


Of course there is much to be angry about for us club members–those of us who know our Autismland journey is going to be a life-long one–but, for me, I have been able to teach a bit more, and make things safer, better for Charlie by responding with courtesy and interest.

This is me, and I have my own history of being regarded as different.

While California has a reputation of being a truly “diverse” and “multicultural” state, the suburb about an hour outside of Oakland that I lived in when I was 4-8 years old was not. From kindergarten through fourth grade, I was always the only Asian-American in my classroom and, usually, in my grade. My difference was regularly noted by others and by me but without contention. When my family moved back to Oakland, to the city, there were many more kids “like” me, though they did not become my closest friends. It was in college that I became fully aware of “Asian-American” being my “identity”–or, rather, of being Chinese-American, versus being Korean-American, or Japanese-American, or Vietnamese (like one of my roommates who had a Southern accent because she had been sponsored by a family in South Carolina), or Asian Indian, Bangladeshi, Pakistani—or versus being a Chinese national, or northern Chinese, or from Fujian, or from Hong Kong, or from Taiwan, or from the Philippines, or Hmong, or being an Asian adoptee raised in Edina, Minnesota or in Copenhagen, or being southern Chinese from the city versus the countryside. Of speaking the Say-Yup dialect vs. the See-Yup one. Of being third-generation versus second-generation versus first, versus being half-Asian and half- “something else,” as Charlie is, versus being—-

As much variety–as much of a spectrum in being “Asian American”–as we speak of in regard to autism.

And perhaps it is that the differences stand out the most to we who are on the inside, who think “autism” and “ASD” and “spectrum” 24/7. While, in the eyes of others, “autism” is still a psychogenic disorder, is still about psychotic children, is still really weird and, indeed, taboo. And perhaps it is all of these thoughts that conjoin in me when Charlie and I are in some public place and his difference and disability and autism are as obvious as my, and him, being Asian-American.

I prefer to respond with dialogue and discussion rather than “how rude!” “how can they not get it!”. (Remember, I am trying to expand club membership, not turn people away and off. There is no exclusivity about understanding and about compassion.)
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Our outing #4 was to get groceries. Charlie gleefully pushed the cart and put in the items I pointed out. As the clerk was ringing everything up, Charlie hovered around, humming loudly. “We’re buying the groceries,” I said, catching his eyes. “Grow-sir-rees,” said Charlie. “Are you going to have sushi for dinner.” “Sushi dinner!” said Charlie.

“That’s all right,” said the clerk. “It’s okay.”

I glanced his way for just a moment, kind of smiling, and my words went right to Charlie: “So we’ll have the sushi and then shower and get ready for school tomorrow.”

“School tomorrow,” said Charlie. The clerk was busy bagging everything, assiduously.

Charlie pushed the cart out to the slushy, icy parking lot. I held the front end of the cart and glanced back frequently, paused as an SUV sped past. We loaded up the trunk and Charlie pushed hard so the cart was flush with the long line of returned carts in front of it. I again glanced over my shoulder to be sure there were no cars coming and then just as quickly back at Charlie, lest he dart out into the line of fire.

To me, the larger the Autism Hearts Club’s membership is, the better. The cost is only as pricey as it seems to you. It may indeed require many fewer resources than you had at first thought.

And what you get has a potentially infinite return of unspeakable value, in any currency.

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Comments
7 Responses to “Autistic, Asian, Different (#231)”
  1. KC'sMommy says:

    Hi Kristina,

    This post made me cry the good cry. Your words are beautiful and mean so much:)

  2. Lisa says:

    You are right, I do think every parent has to figure out their own way to deal with the public’s confusion about how to deal with those who are different like our children with autism. I frequently felt uncomfortable when out with my son in public because of the looks and whispers from others. One day I had a “light bulb” moment, and decided I refuse to be ashamed of my son. It was just that simple.

    I am happy to explain my son’s behavior to anyone who is truly interested, but most aren’t, and that’s okay too. The point is, I am now comfortable with who my son is, and who I am as his parent.

  3. Eileen says:

    Happy Valentines Day!

    I love trying to recruit new members to the Autism Hearts Club. I just want everybody to know how awesome our kids are. Andrew is still young yet, so his disability is not always so noticeable to people while we are out in public, but it is more so now as he is approaching four years old and his language is still very limited. I love when I can see the expression on people’s faces change when they do notice. Either they turn away like you have mentioned or they do what I think is the “right” thing to do…they try to talk to him. I usually need to prompt a response, but I am always just glad that they are reaching out and trying. Andrew gets very happy when people make that extra effort just to talk to him.

  4. Leonie says:

    Although I am not a parent but an autistic member of the ‘Autism Hearts Club’ as you call it, I like your posts.
    But I wrote that before, I hope this will do when you forget how a loving parent you are: your son is lucky having you as a mom. You speak with so much love!

  5. Wade Rankin says:

    These last two posts sum up so beautifully the reward of loving a child on the spectrum. The club should have a recruiting drive. We just need a catchu slogan.

  6. Shawn says:

    When I’m in these situations, with either my children or others, I find the most positive way to handle it is to lead. Leading could involve reaching out to the whispering child or parent with a smile or a short hello. It may mean engaging a child who might otherwise not be engaged. There’s no better way to impact others on a personal level than to be the positive example.

    That said, there’s plenty days when I’m tired and cranky and I just ignore it because the only example I can be is not a very positive one! ;o)

  7. Preemiemum says:

    Hi Kristina, Please count me in as another member, it’s melt-downs that I have the most difficulty explaining, struggling with a child who has strength beyond his size, whilst trying to ignore the tut’s and remarks about my parenting skills! One day I will think of something

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