Many of us who travel in what I've sometimes called Autismland know the story "Welcome to Holland." Raising an autistic child is compared to traveling to a country you didn't expect you'd end up in, and finding the experience, while different, highly worthwhile. Having thought you were going to Italy, you end up in Holland; you are quite unprepared for a different culture, language, country, but ultimately are glad you visited. The story characterizes a parent as an outsider, a tourist, who finds her or himself in a place whose mores and landscape and speech are different and even unknown. The parent can choose to be an "ugly American" and express shock and distaste at the different ways of the inhabitants of the country. Or,the parent can choose rather to "do as the Romans do when in Rome" and try her or his best to learn the language and the ways of "Holland"---of Autismland. While the parent might never become a "naturalized citizen" and still feel always likes something of a tourist, she or he can learn so much about this new place that the natives wholly accept her or him, and that customs and behaviors that had seemed "weird" (humming, rocking) make quite a bit of sense.
A recent blog post in which a mother comments on the flapping behavior of a young girl and the responses of her grandmother have evoked some, and then some, discussion among bloggers who are parents of children on the autism spectrum. Myself being such a parent, I immediately thought "autism spectrum" when reading the description of the young girl flapping and speaking repetitively. The author of the post in question, Smockity Frocks, has taken her February 23, 2010, post entitled "In Which Smockity Considers Jabbing a Ball Point Pen Into Her Eye" down along with the comments (though the post has been cached by Google). There is now a note on Smockity's blog stating that it has "come to [her] attention that [her] motives are being slandered because of what [she] meant to be a humorous look at life around [her]"; she further notes that "If you are interested in spreading Autism awareness please go to this link," to make a donation to a large autism organization.
The scenario that led Smockity to wish (in a tongue-in-cheek way) to jab a ball point into hereye jabbed me, albeit in a more metaphorical way and in the gut and, too, the heart. Many has been the time when Charlie has been like the young girl in Smockity's account and when I have been her grandmother, and many have been the Smockities we have encountered. I was not surprised to read Smockity's reactions and thoughts in her blog post. Charlie is more than 12 and a half years old now, 7 or 8 inches taller than me, on the moderate to severe end of the autism spectrum, and we have had many an "interesting" encounter with those who seem to find many things that Charlie, and myself and my husband, do to be odd, and just not what people should do. While we certainly don't enjoy knowing that anything we do might cause anyone else to even imagine inflicting physical harm upon her or his person, we have accepted that other people find Charlie and our little family to be kind of weird.
And we're ok with that.
A little more about why.
A friend, in asking me about my trip to Greece with my students, noted that he's never been there. "I can't speak the language. I don't like being seen as a tourist," he said. To which I replied, I figure people just assume I am a tourist, maybe because I'm Asian. I'm not hesitant to pull out a map and, while I was able to do a decent job of asking tha ethela elleniko kafe, skheto ("I'd like a Greek coffee, black"), it was back to English for pretty much everything else. (I know ancient Greek and this helps me read, but not speak, modern Greek.) "I don't mind being a tourist," I said to my friend. "What else would I be, in Greece?"
I do believe that, when in Rome, do as the Romans do. But I also figure that the Romans (the Greeks) can tell my "Roman(Greek)-ness" is acquired and that, inevitably, I'm going to talk, act, be different.
And to me, this is quite all right. First because, as noted, I'm Chinese American and have no hope of passing for Greek. (No hope.) Second because I'd much rather whip out my map and tour book when I'm lost, rather than roam in endless, vexed circles (and end up asking for directions anyways).
Third. Because I've spent almost thirteen years as the mother of a child who talks, acts, is different. A child who is autistic and who has (quite unintentionally) drawn attention to himself (and Jim and me, his parents) by doing things that people aren't so used to seeing.
Things that people think are weird. Things that make people pull on the hand of their child who is staring at our child and say a just-audible "don't stare, we'll talk about it later." Things like stopping suddenly on the sidewalk with both feet together and head down and making a series of grunts and irk-beep-sort of sounds and turning around before walking on. Things like throwing his taller-than-his-mother-form down on the sidewalk and wailing at full decibel strength. Things like talking about "no Barney, no Alphabert, Teletubbies!" over and over. Things like knocking all the cake mix and coffee off the grocery store shelves and, well, that sort of thing.
Once upon a time, when Charlie was, say, 3 years old and I still thought I cared about "recovery from autism," I cringed to find myself and my most unhappy, wailing, flailing child become the object of strangers' stares or (these often seemed more devastating) averted eyes. I could almost feel their mumble-grumble:
What's wrong with that child?
How can she let him be so bad?
I would never let my child do that in public.
Someone should take her aside and tell her what she's doing wrong.
The kid did that and she just tells him "it's ok, sweetie?" That boy's no sweetie.
What's wrong with that mother?
I can't say I'm impervious to such silent critiques. After nearly thirteen years, I have to say, I'm more surprised when someone is kind to Charlie when he's in neurological storm mode. Stares and shakings of heads are the norm one expects and while I do still feel the sting, experience has taught me to act as if I'm totally ignoring all that negativity (even though I certainly feel it) and to concentrate on helping Charlie, calming him, getting him out of a place where he can't at the moment be. I know people are staring and I'm used to it, used to feel I might as well say, Yes, we are the weird ones.
Or rather, Yes, we are the weird ones and it's ok with us. We can handle it.
And when I'm feeling more defiant, Yes, we are the weird ones and it's ok with us. We can handle it fine. Can you?
As noted on her blog, Smockity is not "responding to emails or attacks on Twitter, personal blogs, or forums." I hope that she might be following any trackbacks to her blog and at least noting some of the responses to her post, and who the authors of such posts are. Indeed, I rather think it behooves her to do such because as you, my autism commadres well know, we and our children are everywhere, in libraries and supermarkets and parks and malls and playgrounds and college campuses and Costcos and everywhere that can be imagined. Truly, her post could not have been more timely as Autism Awareness Month is just around the bend.
And so I extend a welcome to her and to all who've yet to travel in Autismland, in this country of difference where we've come to feel so very much at home.