Yes We Are the Weird Ones

 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.

Comments

[LaGloria]

Love this post! Thank you!

[Kristina Chew]

Thank you so much!

[emma]

Having not always been a parent of a child with a disability, I can understand that sometimes other people don't get it.

But, even after some possible explanations by others in comments, that the person still wanted to find fault somewhere (with the grandmother not speaking directly to her)just speaks of someone either looking to find fault, or being too proud to admit a mistake. I find that depressing.

I can't speak to other people when I'm with my son, at least not more than a few words, so I have often spoken loudly and indirectly to the world (or used sign), just to give people a hint.

I imagine that if Dimitri were verbal, we would would receive less understanding. As it is, as he gets older, his differences are more obvious (blessing or curse?)

[Σωκράτης]

Weird Families rock!

((((((hugs))))) to you all...

[Jill]

A beautiful post, as usual! Welcome back from Greece!

[MotherVox]

Kristina, Beautiful post, fabulous. This was just what I needed to hear today. Even after years at Autism's Edges, I'm still occasionally thrown for a loop by the critical and/or condescending gaze that can come our way. That happened earlier this week, and your post welcomed me home.

[Elise]

You always have such grace. I truly commend you.

[Judy T]

Wonderful post, and a stark reminder that there are people who will always find reasons to believe that whatever is going on, it's always the parents' fault. I remember meeting an adorable child of about 4, who was clearly disabled - possibly ASD, possibly something else - and other parents were muttering about the parent "not handling him right." None of them had even spoken to the child. He was so obviously "different," but if you didn't interact with him, you didn't have to know that. He perseverated, his speech was stilted, scripted, echolalic, and his receptive language was even less developed! But these parents who were staying a "safe" twenty-plus feet away were happy to judge the mother, who was doing her best to handle him - and that was quite a handful! We haven't come nearly as far as we like to think we have. :-(

[Arby]

I hope that Smockity spends some time in prayerful reflection (she made a point of writing about the Bible in her hand so she might do this) and realizes that she may have been wrong, that the majority of the original commenters on her blog who raised the autism question were being kind, and that if she had shared a simple “I hadn’t thought of that” rather than digging in her heals she would have diffused the entire situation before it went viral.

[Shannon]

Thank you for once again treating a prickly subject with contemplation and kindness yet without compromising, and with plenty of teachable moments.

I have also been mulling over the need for more "international diplomacy" outreach. I hope we can all work very hard towards speaking out for our children, to inform people from "other cultures" not only as to the different-but-not-wrong worldview and perceptions of children with autism, but to proclaim *how much our children are loved.*

I don't believe SmockityFrocks had any idea how many Mama Bears she provoked. ROOOOOAR!

[feebee]

Wow, what a piece of work. Makes me wish we could all move to a real Autismland, I mean, Holland. Or Schmolland, anyway. I'd still visit Italy now and again. I suppose.

[Louise]

Having read the piece and all the comments, I am now wondering what is the best way to talk to younger NT children when in situations like this. How does a parent explain about the behaviors of other children that might be considered "rude" from one's own child, but that might be the result of an autism-spectrum disorder? Ask the parent or guardian? Should you let the kids handle it themselves?

Kids are very sensitive to issues of injustice. When our very small charter school has a child with Asperger's attending the 2nd Grade, the students were very aware of the fact that A. got to wander around, not pay attention, play with whatever she felt like, talk out of turn about anything she wanted, etc, and for this was "rewarded" (as they perceived it) with even more attention and a teacher all her own. A. was very needy of friendship, but other children didn't want to play with her after a while because she appeared to break all the social conventions - grabbing, ignoring requests, not following rules, etc. Having the teacher discuss the situation with them in ones or twos or more didn't help, because the other kids couldn't see that there was anything at all wrong with A, aside from her behavior. Why couldn't THEY do what they wanted and say that they has a "brain problem" too?

(A eventually went to a large and expensive private facility on her sending district's tab. That had been the parents' desire all along, but their home district didn't want to pay for it. So the parents sent her to the charter school for a year to demonstrate that "all local options had been explored." I do not know how she fared after that.)

[Emily]

Nicely, in every sense of the word, said.

[autismvox]

I figured Smockity was writing with a deep degree of sarcasm---the whole thing about wanting to jab a pen in her eye---but still, rare has been the parent we've encountered who hasn't some sense that something like flapping might be a sign of a child on the autism spectrum. On the other hand I guess we can thank Smockity for getting us all to reflect on why there's still a need for autism awareness!

[farmwifetwo]

Louise,

In K, we were finding our way. In Gr 1 I took a book to school - it's still there in the school library - about being a friend to a child with autism and it showed a look into that child's world in a manner that the NT children understood.

Then they decided that if the children were willing, which ever child was "special" for the day, would be his partner for the day. ie. the one to hold his hand to go to the next class. The one to partner with him when he needed one. His buddy on the carpet etc. And when it was his turn to be "special" I was told his "Mother hen's" fought over who was going to still be his friend that day.

In Gr 3 - he has to stay on the fenced side with the younger children - runner. His classmates VOLUNTEERED, to take turns staying with him and playing with him.

We have never had trouble with the children... it's the Teacher's who've given us the most grief... they are the reason we are switching school's. We will miss, the children.

[Leila]

I stay away from NT parenting blogs. They depress me for the level of bragging, wrong set of priorities and other reasons.

This discussion hit home for me though because I'm still reeling from a meeting with my son's Kindergarten teacher where she said the other parents were "SHOCKED!" when my son had a screaming tantrum coming to school the other day. Well, I tell you what, I was also shocked by their lack of compassion and let alone the teacher being more concerned with what the parents thought than what my child, her pupil, was going through. She gets easily peeved and freaked out by his autistic behaviors and I can't wait til this school year is over so I can never see or talk to her ever again.

[Kristina Chew]

@Leila,
What sort of instruction about autism did your son's kindergarten teacher have...... and has she been open/available to your speaking to her? I always wanted to do some "autism sensitivity" for the kids at Charlie's various public schools, but it never happened (partially because the school district kept saying they were either doing something already, or that they would......). Also, Charlie was never mainstreamed more than being in a library or music class with an aide.

Still, I recall the way parents would walk away on seeing Charlie or a child like him "in full tantrum mode"---a certain look on their faces, and walking around us as if to keep their distance.

@Louise, I really am not sure about what the right thing to do it in such situations. I guess I would like it if a parent might try to address the situation at hand first---note that maybe it would be good to give the other child the computer. And then, later, in the car or at home, explain why, explain that a child is on the autism spectrum.

Regarding the school situation, I'd hope that the school would have to provide some sort of explanation of why one child got to be treated "differently"---provided some information and education about autism to students and their families. Parents children on the spectrum have to do a lot to make inclusion work, but the school has a responsiblity to, too. (I think.) (And of course I'm writing with an ideal scenario in mind.)

I don't think these sort of situations have an easy or applicable-in-all-situations answer, that's for sure.

[Louise]

@Kristina, of parent, the parent would have to understand and recognize the autism spectrum in order to educate the her child! It seems that Smockity didn't recognize it, and when other attempted to teach her, she just got defensive.

In A's situation, the two teachers and aides in the classroom worked very sensitively to try to educate the class. Yet, at the same time, the parents were at first adamantly opposed to having their daughter identified and "labeled" to the class. So any discussions with the other children went on rather sotto voce, with one of two children at a time. The school itself was very dedicated to inclusion of all children, with all differences, in the classroom - educational or physical issues, language difficulties - and often whole teaching units were made to explore the cultures and experiences of "children of difference." But autism was never a unit.

It seemed to be the kids themselves who were often most upset and confused by what they felt to be unfairly applied "rules of conduct." But they never got the time to learn about the causes. By the time A left the school, she had been placed in a completely self-contained classroom, alone all day with her own spec. ed teacher and an aide, at her parents' insistence.

I was involved with this case as a member and the head of the school board. What was saddest for me was that A was a delightful, if needy, and highly verbal child, who often seemed to want desperately to learn the skills that she felt would let her "have friends." The parents had their own agenda - which was getting the home district to pay for an expensive placement in a facility on Staten Island. So the charter school, A, and her classmates never really got the opportunity to learn how to all work together well.

@FW2 - that sort of "buddying" seems to have worked well for your school. A charter school, of course, has parents that can pull their kids out if they don't like the education, and we actually had a family leave because they felt it was taking away from their childrens' education to have to deal with non-academic subjects like "diversity" exercises!

We felt the financial loss, being so small, but frankly we were happy to see them go. There are a tremendous number of purely self-interested people in this country. It's what they have been groomed to be by our prime culture.

[Leila]

Kristina, she's an older teacher who only had to deal with extremely mild cases of autism in her entire career. She's never had experience with a child like my son, but even after talking to us and dealing with the ABA team and Inclusion specialist on a daily basis, she still thinks that a child who tantrums like my son doesn't belong in the mainstream setting, regardless of his academic skills. He's not aggressive, but she thinks that when he screams, he scares the other children. Also, she doesn't like when he's disobedient even though we've explained this is part of his disability. She basically wants him to act like a normal kid.

[Hala]

I was able to google up a cached version of Smockity's blog, and I'm sorry Kristina--I really don't think this is a person who will be helped much by all the "awareness" in the world. Honestly, when Smockity only thought the child was spoiled, her response was within the realm of the frustrated-but-amused; when she was forced to confront the idea that the child might be autistic, her entire attitude underwent a change to semi-revolted sneering.

While it might be tempting to characterize ableism as a matter of ignorance, or as the inadvertent stigmatizing that occurs through the well-meaning attempts at "compassion" by the unaware, the fact is that for many, disability and difference (particularly neurodivergence) can provoke something very close to genuine hatred. Until we can accept this, and until ableism is called out for what it is and not simply termed a lack of "awareness," it will never be possible to truly approach the heart of the problem.

Smockity's response to the comments which attempted (with remarkable diplomacy) to assist her in developing "awareness" was a perfect exhibit of this sort of ableism. From her immediate medicalizing of the suggestion of the autism spectrum ("well, I don't know her medical diagnosis!"), to her continued use of scare quotes around the term disability, to the subtle intimation that autism or no, the child she observed (and by extension the autistic children of the commenters and for that matter any other autistic child) was more the product of poor parenting than anything else, and the unstated but ever-present sense in all of her replies that she didn't quite believe in this autism thing anyway, her tone never varied. Nothing in the (frankly, far sweeter than deserved) comments attempting to raise smockity's "awareness" were able to penetrate that ableism.

The community of special-needs parents and the community of disability advocates are too often separate, and in many ways do not even speak each ther's language. The special-needs parent wants to believe that if the observer knew of her child's unique situation ("she has asperger's" or "he has Tourette's"), they would welcome her child with love and understanding, or at least benign neutrality. The disability advocate has often spent a lifetime forced to raise "awareness" of his or her condition (often whether or not the advocate would choose to: a certain amount of explanation is demanded in exchange for even the most minor of disability accommodation), and knows all too well that with awareness of disability comes the relegation of the disabled person to the status of "one of them"--and where the ableist is concerned, "they" inspire revulsion, fear and often hatred.

If the special-needs parenting community is unwilling to accept these realities as its own, the crusade to spread "awareness" will be at best a plea for charity ("please have pity on us, my child simply can't help it!") and at worst will place parent and child squarely in the crosshairs of an ableism with which they are unequipped to contend. The tools of the advocate--which include an unflinching willingness to identify bigotry and ableism for what they are, and the willingness to grapple with the anger and grief of such a realization--are a necessary part of arsenal of the parent who hopes (and fights) for full inclusion.

Kristina, I'm sorry to have gone on a soapbox-style rant in your comments thread, but I've been working on articulating my problem with the "autism awareness" campaign, and... well, there you more or less have it.

[Regina]

I think it's a matter of obliviousness or lack of reason to think about that only by the grace of whatever deity you choose or plain dumb luck, that one can shift in a moment from the judge to the judged. That "uppityness" or asking from an "entitlement" can change to reasonable and necessary accommodation depending on where one stands, but sometimes it may take actually standing there to see it. That awareness may not do squat, but that it sometimes takes experience to gain real perspective, a different thing. I'm not sure hate is always the manifestation to difference, but I am acquainted with the discomfort, defensiveness and casting as "otherness" that many have with difference...even difference that doesn't have to do with "difference".

While I'm still processing all of Hala's statement, the part about interpretation as a request for pity is the one that resonates - my child has a disability from the perspective of society at large, but she is not pitiful or pitiable, and that's not a card that I want to play.

[Sabusykids]

Can I just tell you how much I absolutely love the term neurological storm mode? LOVE. IT.

[Kristina Chew]

@Hala, thank you for the soapboxing---Smockity certainly unleashed a blogging storm of raging mama bears........

[Regina]

I hope that Hala will not mind me pulling out one paragraph, and hopefully this does not remove her context, because it's IMO an important one -
-----------------
"The community of special-needs parents and the community of disability advocates are too often separate, and in many ways do not even speak each ther's language. The special-needs parent wants to believe that if the observer knew of her child's unique situation ("she has asperger's" or "he has Tourette's"), they would welcome her child with love and understanding, or at least benign neutrality. The disability advocate has often spent a lifetime forced to raise "awareness" of his or her condition (often whether or not the advocate would choose to: a certain amount of explanation is demanded in exchange for even the most minor of disability accommodation), and knows all too well that with awareness of disability comes the relegation of the disabled person to the status of "one of them"--and where the ableist is concerned, "they" inspire revulsion, fear and often hatred."
-----------------
I wonder what is people's experience? No matter what my hurt might be it's not about me; I might hope I understand my child's perspective although I accept that the best that may happen is a kind of fellow-traveller status, much as the person who does not have contact with disability of any sort may not consider it with understanding unless actively put into a frame where that's a necessity.

There's a lot that I'm thinking about, because this is a larger and longer matter than a reaction to any Smockity of this world. We have a lot of work to do - I think anyone can acknowledge that.I don't want to be an old, old lady complaining because someone looked at my child "funny" or airing grievances.

[Kristina Chew]

I've been wondering too----here (and other blogs, noted at squidalicious.com) we are giving Smockity all this attention and is she listening? Is she reading any of the numerous posts? Or are we just trading words and worries among ourselves, preaching to the choir as it were, feeling better for having said our say, but who knows what Smockity thinks? (And do we care....... I'm just throwing that out there.)

I like the "fellow traveler" notion, Regina.....though getting stared at or pointed out has been something I've encountered my whole life, "pre-Charlie." Though of course it feels different when it's about one's child.

@Leila, hoping for a better 1st grade teacher for your son next year......hoping?

[Estee Klar]

Someone asked why this is not discussed in schools more often as young children are sensitive to such issues. I agree, and I have tried even in Adam's school to enable that and I'm curious at the resistance.

[Kristina Chew]

Am curious too at that "resistance." One (among many) frustations I had with a previous school district was that they had "character education" about "people with differences" but there was not much of a response when I mentioned autism and disabilities.

[J]

I love this post. Beautifully written.

[Shannon]

I'm leaving this comment on all the blogs I linked to and which haven't yet cited it: SmockityFrocks issued a sincere apology today.

http://www.smockityfrocks.com/2010/03/an-apology.html

[Kristina Chew]

thanks, Shannon---

[Synesthesia]

Hurm. People's opinions. They expect children to be these quiet little soldiers who just sit up straight and don't say a word.
Man, how unrealistic. I know when I see a child acting a certain way I think, this child probably has autism or something else. I don't think, that person fails at parenting. Besides, I tend to do my share of flapping and squeaking in public too.

[Kristina Chew]

"quiet little soldier" is definitely a phrase that couldn't be farther from describing Charlie!

[Alanna]

We're the weird ones, too. My son is NT but my father has Alzheimer's. We're the ones who smell faintly of urine, get places late, move slowly, look off-kilter. My dad says strange things, talks too much or too little, will tell us loud and in public he has to go tinkles.

Sometimes we get understanding, and sometimes people just edge away from us as fast as they can. I try to see it as sifting out the people we wouldn't want in our lives anyway...

[Mike]

People are unaware how hard it is to raise a child with a disability. I love the strength you have to handle the ups and downs that come with it.