Susan Senator

It is no secret that I do not take sides in The Autism Debates. This is because I know and love so many people on both sides, and I am a Libran, so I see worthy points in both of their arguments.

Today I was thinking more about the side in favor of biomedical inteventions because I heard from a reader who was so enthusiastic about how the DAN! protocol “worked” for her son, in that it helped his functioning and communication levels. It dawned on me that I should blog what I was thinking: that there might be many conditions out there being called “autism” but that are possibly something else that just manifests as autism.

We are all aware that there are many more kids with allergies today than there used to be. Unlike autism, it is much easier to diagnose an allergy. No one can claim that the rise in allergies is about better diagnosing, because most of the time having an allergy is a clear-cut thing, where you get some adverse reaction that is pretty straightforward and unmistakable anaphylaxis or something like that.

Or so we think. What if there were something called “Allergy Spectrum Disorder,” where you have a much larger spectrum of allergic response, from sneezing at pollen all the way up to autistic-like symptoms from eating gluten? I think that this is the ASD that some parents are looking at, frankly, and not the ASD my son was born with. It is hard to ignore the scores of “success stories,” where you hear of a kid becoming so much more verbal within a few weeks of discontinuing gluten and casein. There must be some explanation for that.

I think there are three possible explanations: 1) The diet helped the child’s allergic symptoms; or 2) The child was improving on his own and had a burst of development that coincided with the use of the diet; or 3) The child has not improved much, really, but the parents are so happy and relieved to be taking action that they feel differently and see things differently, and see their child with new, positive eyes.

Any of the above are happy occurrences, when you think about it. The problem comes when one side wants to make a claim that would become a generalization for all kids. Once the biomedical side claims that all autism is is a form of environmental poisoning for all autistic kids, and that we all should act now to obliterate autism, that is when the the trouble starts. Once the autistic-rights side claims that there is no way to address autistic-like symptoms with biomedical interventions, and that we should stop trying to find a cure for autism because that is an insult to all autistics, that is when the trouble starts.

Parents must find the right balance between trying to improve/alter their child and trying to give him the skills to have his best shot at life. Society must find the right balance between trying to include and accept people with disabilities and differences, and trying to ameliorate the conditions that cause disorders (cure them). These are tall orders for a human race that is all too human and racist to begin with…

Maybe what we should be looking to understand is HSD: Human Spectrum Disorder.

Is there anything better in a relationship than laughing over something funny you experienced together? This shared humor is what binds me closest to the people in my life. I like coming up with shorthand references to funny things that happened and bringing them out at other times. I think that our children probably give us the most material for this. All three of our boys have come up with some amazingly astute or outrageously naive one-liners that Ned and I refer to years later.

Whenever someone is stuck, but it’s kind of their own fault, one of us will say, “Hep me Daddy, I tuck.” This refers to when Benji (at the age below) was standing in his crib and Ned walked by, and Ben naively asked his daddy for help, believing he was “stuck” in his crib and that we didn’t know about it. And being his all-powerful, all-good parents, we would help him get out! When, of course, we had put him there in the first place…

I can’t believe Benj was ever this little or innocent. Remembering makes my heart squeeze with a pleasurable pain. And so last night when for some reason Ned said to me, “Remember Benji in that crib…?”
And I then said, “Hep me, I tuk.”
We both laughed longingly but also deliciously. There is nothing quite as satisfying as sharing a laugh at your kid’s expense!

I am going to be interviewed on MSNBC on Wednesday, December 28, sometime between 9:30 and 10:30 a.m. EST, talking about my book, Making Peace with Autism. It will be live from a studio near where I live, a split-screen, slightly time-delayed type of interview. I’ll try to smile a bit. Very excited!

Spread the word, if you could…

A lot of friends say to me, “I wish I could write,” and they sigh. I find myself wondering, How can you not write? Writing, to me, is akin to seeing a good friend. Most of the time, you want to do it; there are times when you don’t. But if you put yourself in that good-friend mindset, you find something there just about everytime.

When people ask me how I write, I tell them I start with an intense feeling and go from there. What are you sad about? Angry about? Insanely happy about? Moved to tears over? Anything that has caught me in the belly gets written about. Most of the time I guess that’s my kids because — let’s face it — they originated in my belly, literally. But even if you adopt your kids they originate in your mind, then your heart, and once you know them there is that visceral connection. (This I know from dear friends of mine who have adopted kids.)

You start with the emotion and you then name it, and the piece emanates from there. The less I attempt to give structure to it, the better. So I never use an outline. I hate outlines. Outlines kill my creativity. Similarly, I hate writing at a prescribed time of day for a prescribed amount of time. It then becomes a task, which is creativity death, too.

To write, you shouldn’t think about the entire project in your head. That will kill it too, because it is overwhelming. Even though when I write a novel I often know how it will end, I do not let myself think about that when I sit down to work on it because that will choke me. You have to write the piece — however small it may be — that you need to write in that given moment and be happy with that. And yes, if an idea or perfect passage seizes you at 2 a.m., you should run to your laptop/pad/typewriter/crumpled tissue and write it down!

You must follow your internal writing guide, which is unique to you. Sometimes that may mean that you can’t eat breakfast. Sometimes it means that you will sit and write the entire book bare bones, and spend the rest of the year filling in the details. Sometimes it means writing a great scene, or just the inside of a character’s head. Sometimes you will discard that later; but always save it somewhere else because you can borrow it and adapt it for another project later, and you will, trust me.

I don’t necessarily write what I know. That is not necessary. Write what you want: that is the universal rule. I have written books about 19th century Russia, people with past lives, people with dead siblings. People who are divorced. Do I know any of that? No, thank God. But I can imagine, talk to others who know, and do research. I can listen to conversations and glean bits about how people really talk, and store that away for later, using their speech patterns even though I do not know them, and I am not them.

When you write, don’t judge yourself. It is best not to think things like, I write, but I am not a writer. Allow yourself to begin to feel like a writer, if you want to write. When would it start to count, after all? When you’re published? When you’re a bestseller? Why have a standard like that? Just do it. Start typing and see what comes out. If it’s awful — and I doubt it will be, if you follow my rules of thumb — go back to it and hone it. You should, anyway. That’s the final rule: you are never finished, there are only deadlines.

I tried selling this piece everywhere: WashPo, Times, Globe, O, and nobody was buying. It is now grist for the blog.

What do you do about loving somebody who can’t love back? Given that all my life I have been the garden-variety insecure, low-self-esteem kind of female who has soured countless relationships with my demands, my inability to take things at face value, and my need for evidence of love, this is a particularly thorny problem. Because now that I have an autistic son, and I must absolutely do without.

When I decided to have this baby, I remember thinking to myself, “Now I will always have someone who unequivocally will love me.” Of all the things I worried about while pregnant, I never imagined autism. Not with an incidence of 2 in 10,000. Who thought of autism? I thought instead about how bad it would be if my child became someone horrible. “Please make sure he is not a criminal” I’d whisper. Or what if he died before me? “Please make sure he is healthy.” I should have been more specific, but who thinks, “Please make sure he is not autistic?” Then you’d also have to add the litany of other unwanted conditions, personality types, situations. “Please make sure, no cleft pallate(?), no cancers,” or “Not someone who invalidates others’ feelings, bullies, or teases.” But praying for your baby can’t be like ordering a la carte.

There have been so many things since then I’ve adjusted to, given my blithe naivete at the beginning: every milestone an agony of waiting, hoping; figuring out what I could expect from Nat, when even autism experts couldn’t tell me; figuring out whether and then how to give him medication; breathing down the necks of his teachers while knowing there’s no way anyone could do more for him. I ache for him because of what he will never have, never be. But the way I ache to get something obvious back from him is probably the hardest of all autism adjustments.

Nat is sixteen years old now, which means I’ve spent the past sixteen years mining every interaction for significance. Teenage boys are already so evasive by nature, using their moodiness and their Ipod plugs to define the boundaries between themselves and their intrusive parents. Perhaps, then, I have had a jump on my friends who are only now facing the stony silences and the blank stares. Autistic teenage boys are just ganglier versions of their plumper, youthful, isolated selves. One-way conversations and lack of eye contact have been a part of my experience as a mother since Nat was two.

And yet, that doesn’t really make it any easier. Take eating, for example. Sometime last fall I happened to offer seconds at dinner time. Maybe I hadn’t done that before, because I assumed that everyone would just ask or take it themselves. Nat never asked for seconds; he would always get up from the table the moment his plate was empty. This time, hearing me say, “Anyone want some more?” he came back to the table and proceeded quickly to devour the large second helping I had given him. When I offered a third helping by asking the same way, he took it. I realized then, my stomach plummeting heavily with guilt, that all this time he probably would have eaten a second helping of food had I asked in just the right way. You ask in just the right way and you learn your child is hungry. What else am I missing, by not asking in the right way? I shudder to think of it.

On the happier side, I have learned to take delight in every successful conversation, no matter how lumpy his speech is; at least he’s talking to me, I figure. Or, like when he starts whispering to himself, and opening and closing his hand in rhythm with his words, I know he’s happy. I look for the puppet hand. I know that he likes doing something when he jumps up immediately and shouts, “Yes!” before I even finish asking. “Do you want to go outside and—“ “Yes!” And I know that when he doesn’t want to do something, he acts as if I’m joking. “Nat, should we vacuum before watching a video?” “Yes—No!” He mouth stretches into a grimace. “No, Nat, I’m not joking. We need to vacuum.” “No vacuum.”

Every new skill I can teach him is cause for giddy celebration and bragging. Nat is swimming in Special Olympics. Nat didn’t grab the rope in the backstroke race. Nat talked on the telephone. Nat no longer pinches his teachers. In my odd little family, sweating the small stuff is key, as are making mountains out of molehills. Face value is cheap; creating meaning where there may appear to be none is golden.

A long time ago, I realized on some level that Nat did not seek out my affection, in much the same way that I recently realized he did not seek more food even though he was hungry. It took awhile for it to register fully with me, because I was always hugging him, kissing him, picking him up, as a baby, a toddler, and a little boy. We did not lack for loving contact. But what I also did notice, in the earliest days of his life, was that I had this strange feeling a lot of the time, of love rising up in my throat like a wave, falling towards him, and then landing somewhere near him, but never met by him. I felt like he didn’t really need me, even though the evidence was there that he did: he cried for a bottle or a diaper change, he whimpered for sleep. If I had taken that at face value, I would never have feared that something needed addressing, and his autism would have gone undiagnosed far longer than it did.

So now, sixteen years later, I am no longer an autism virgin. I am hardened and wise. I understand so well now that wave of love is going to rise and fall like the tides, just as immutable. I also understand that whatever I need from this son of mine I am probably going to have to get someplace else, or try to find by searching his flickering glance. But every now and then, when I ask him for a hug, and I notice he is clinging to me a tiny bit after I have already begun to pull back, there is still this surge in my heart that tells me all I need to know.

Now that I am in my 40’s, I have developed a strong sense of really wanting to take a good-sized bite out of life and tasting all (or most) that there is to offer. I do not want to have regrets; no “road not taken” for me. This applies even to minor things, like how I spend free time, or being sure that I have some qualitative interaction with my children at least once a day.

The other night, while out to dinner at a wonderful restaurant, I found myself compelled to apply my hard-earned carpe diem-esque attitude to a total stranger. My husband and I were seated one table away from a twenty-something couple. The man, who faced us, was a little portly, with longish hair and a very young face. The woman was lovely, with long Sarah Jessica Parker hair and a slim, straight back. I could only hear his voice, which seemed to ring across the dining room and hook itself into my ear. I did not like what I heard:

You’re festering, Hon, I can see it. You shouldn’t fester. Hon, nothing good can come of festering, you have to let it out…

We heard the odd word, “fester” about ten times, something which would have annoyed even Uncle Fester. Worse still was his use of the nickname, “Hon.” I doubt that was her name. Who calls their date “Hon” to the exclusion of anything else?

This continued and got louder with every new paragraph. The man ordered another martini, and began slurring his words, continuing to call the woman, “Hon,” and badgering her to do this, say that. Be different. Be like him.

Oh, I am definitely a Two-Coast Guy. I’m definitely going to have a home in California and one here. Oh, ya gotta live on two coasts. No way am I just gonna live on one…

And so on. As loud as he was, I never heard a thing that Hon said. All I could hear was him haranguing her, urging her to be different than she was, this beautiful young thing, to listen to him, to be like him, the loud lout — and it put me off my feed. Even with a Snickers Sundae on the menu, I did not have dessert. And I do not like missing out on tasty treats, as I have stated above.

Did I mention that I had had a couple of glasses of a delicious wine? I turned to my husband and said, “You know, life is too short to spend your time with a loser.” He smiled at me, paid the bill, and we rose from the table. Suddenly, I just knew what I had to do. I would show her the way. I waited for my husband to go ahead of me, and then I bent and whispered loudly to the woman, so that both the guy and the woman could hear:

You can do much better than this. Get out while you can.

I stood and smiled, and walked out, leaving the guy to sputter in his martini, saying, “Did you hear what she said?” And to my delight, he repeated it, in case she had not heard. I could not have written a better ending.

Maybe now she will take this opportunity to reflect on her situation, on the many other roads to be taken, and take leave of this dead end. Life is too short to spend time with people who don’t make you feel good.

I am no domestic goddess. I would rather be waited on hand and foot, but being the mother of three very active boys, that is not to be.

And yes, in my use of the term “domestic goddess,” you can see that I’ve linked to Real Simple rather than the expected Martha Stewart. That is because I see Real Simple as being more of a scourge on the housewife’s horizon than Martha ever was. Martha has taken enough garbage, for one thing. She did her time, so to speak. But even more important here, Martha has been misconstrued for decades and I want to set that straight. Martha is the realm of domestic fantasy, where you can gaze upon spun sugar snow fairies and country houses slathered with just the right paint colors and filled with perfectly aged furnishings. Martha was never to be taken seriously! Martha is the dream, like being waited on hand and foot.

But Real Simple; that’s another thing altogether. First, the misleading name. The magazine should be called “Real Hard,” or “Real Nudgy.” It claims to be all about simplifying one’s life, taking pleasure in simple things, etc., but it is really about mind-numbing chores that would drive even the most enthusiastic housekeeper to drinking Pine Sol. Anything that has a full-color photo spread on labelling boxes of household mail, or a two-page rundown of what house chores one should do when, and how many times a year (like dusting, vaccuuming couch cushions, getting rugs shampooed, for instance) should not be claiming to be about anything simple, but rather, is about the Really Simply The Most Boring Drudgery One Can Ever Do.

I’d much rather spend my time picking out a great sweater than picking up the throw pillows and rotating them every so often. Or, of course, buffing an opening hook on an essay than buffing the floors. But sometimes writer’s block hits and then what can you do?

All the stuff you neglected while you were on a roll. But I am not talking about getting out that special tool for dusting Venetian blinds. Let me explain where this rant is coming from:

Ever since we bought a big, messed-up Victorian house,
we became “house poor,” and so, I am the house cleaner. Oh, sure I get my sons to vaccuum a bit, but that takes a lot of oversight and that makes me tired. Sometimes, let’s face it, it is a lot easier to vaccuum three dusty floors myself than to scream, “No, Nat, you can’t just vaccuum one spot for three hours,” or “No, Ben, you have to do more than just clunk the vaccuum against the floor and then run out of the room,” or “No, Max, do it now!”

So, I hate house cleaning because I have to yell at my boys to get it done or get really tired and really dirty doing it myself. But the thing I always forget is how satisfying it is to look at the house after I’m done cleaning it. Especially when you use good products, did you know, green cleaning is good for your home and for your health, it’s not just a matter of saving all the money. There is nothing like the pleasure of doing one’s best work by oneself, and in one’s own way. Althought the regular cleaning Gold Coast service might be of a great use saving a lot of your time, too. So if I skip dusting for a month but wash the floors every week because I love the shine on them, then so be it. And nothing beats sinking down into a soft clean couch with a good book when all is done! Experience Maid Easy today!

A reader from a website I respect wrote in about my use of the puzzle piece on my website, the by-now familiar symbol many use for autism awareness. She asked me if I would consider using the infinity sign instead, adding that the puzzle piece carries a negative connotation for some, because it implies that our children are somehow not whole, that not all their pieces are in place, or that they are puzzles to us. I told her I would think about it, but I am hesitant to make this change, because frankly Nat is a puzzle to me in many ways, although I agree with her that he is completely “whole,” just as he is.

I wrote the following commentary for NPR’s Marketplace, but they “are not going to use it.” (Don’t you just love the myriad ways editors express rejection of one’s work?) The piece is about how everyone is talking about the XBox 360, and how they can’t find it anywhere, and yet Max, my cool dude thirteen-year-old (front and center):

could not care less.

X Marks the Box — A Commentary Meant for Public Radio
Where did I go wrong, raising a boy who has no interest in violent video games? My thirteen year old son Max doesn’t care about Xbox 360, the must-have present for teenagers this Christmas. Even though Microsoft was even cannier than usual in this round of marketing because they managed to ship their next generation product ahead of Sony and Nintendo, in time for Christmas, and in short supply, Max remains indifferent to its charm. “The graphics are good, but it’s mostly all sports games and first-person shooters,” he says with mild disgust.

I know what you’re thinking: artistic type. Anti-technology.

Wrong. Max is as big a computer geek as they come. Max is Uber-technical, obsessed with designing his own computer games, making Flash movies, hacking, and blogging. Max’s computer teacher comes to him for help.

Which is the real crux of my problem: what presents can I, a hopelessly right-brained, soft-hearted female, get this boy? How can I connect with him, a virtual stranger wrapped in baggy pants and attitude? Long gone are the days when I could make him smile with a new Beanie Baby. I look at Max’s wish list, bewildered. Every item is a significant bit of software, averaging close to $100. I need a manual to understand the names. I need to know that “Alias” software is different from an Alienware computer, apparently the most awesome of computers because it has alien eyes on it – for a retail price starting at $4,399.

Hmm, I think desperately. Maybe I can just paint some alien eyes on my old Mac?

What am I going to get Max? I’m panicking.

And then I notice the item towards the bottom of the list: Weebl and Bob Plushies. Weebl and Bob Plushies? I dutifully Google it, and there, before my eyes, are a cluster of little stuffed creatures with the sweetest faces. Tiny, dot eyes; felt bodies. My breath catching in my throat, I realize that I have stumbled upon the other side of thirteen: Fragments of innocence.

I can order Weebl online for $17.75. In fact, I will order the whole set, because now I feel like celebrating that my son is completely out of the mainstream, difficult to shop for, and I couldn’t be happier.

Benji, my youngest, has his winter concert tonight. (Yes, I said “winter concert,” not “Christmas concert.” Our town is so completely hogwild into “diversity,” God bless them, that the kids always learn a whole mixture of “seasonal” tunes: something from Asia, for the Chinese New Year that’s coming in January, something for Kwanzaa, something for Chanukah, and even something for Christmas.)

At his kindergarten concert two years ago, Ben wore a tie:

At last year’s concert, Ben wore a tie, a real one that time. But for the entire concert, he played with the tie. It went up, it went to the side, it went all around. It is amazing how many ways a six-year-old can play with a tie while standing in the front row at a concert, principal looking on and parents frowning.

I asked Ben if he would like to wear his tie this year.

In true Ben style, he said, “No, that tie distracts me.”

I gave the New Yorker the opportunity to publish a wonderful, moving bit of poetry, but they turned it down. I now give it to you, though it is not truly mine to give. I recorded these unintentionally poetic words uttered by Nat when he was about to turn five (eleven years ago). I came across them again recently. I now know that this was the beginning of his self-stimulatory talk, a common feature of autism, and something that was a huge struggle in our lives for the longest time. I eventually learned what self-stim talk means to Nat (it is a great source of comfort to him and I believe helps calm him and organize his thoughts) so I no longer cringe at the “silly talk” (his name for it). I cringe when other parents talk about getting rid of their children’s self-stim talk because I both understand their heartache and struggle, and wish that they knew what I know. I don’t mean that to sound arrogant. I just wish that we parents could learn faster and earlier just who our kids are and love them as they are. There is, of course, a thin line between loving them as they are, giving them the skills to help them succeed and thrive — and trying to shape and change them into something they’re not.

Anyway, I was and still am struck by the simple beauty, rhythm and emotional content of his words. If I had extinguished Nat’s silly talk when it first emerged, I would never have heard this haunting poem.

I call it “Dark.”

Dark
By Nat Batchelder, age 5

Stop crying,
Dark,
No crying in the dark.
Settle down, stop.
No running away
And stop running away.
No crying
You better stop,
You better stop crying.

The Farrelly Brothers are coming out with a new movie, The Ringer, about a man who decides to rig the Special Olympics — he pretends to have a developmental disability so that he can win. But what happens is that he gets to know the other teammates as people, and makes connections with them. It is not corny, however; in Farrelly style, the whole thing is done with over-the-top humor.

In fact what I think is the best thing about this movie, though I have only seen the trailer and read this New York Times article (thanks to the ARC of the US), is that the Farrellys used a lot of people with developmental disabilities (mental retardation, Down Syndrome, autism, etc.) who come across as real people, not two-dimensional souls you merely feel sorry for or look away from. This movie gets you to look disability right in the face and get to know it, without either of you being destroyed, degraded, disgusted, or manipulated. There is no Message here; it is a comedy that happens to use all kinds of people.

To give you further evidence of the sincerity of this movie, Special Olympics Chairman Tim Shriver is the executive producer, a good guy if there ever was one.

The fact of the matter is, developmental disability is hard to look at if you are unfamiliar with it. I remember my secret prayers when I was pregnant with my children: “Make them okay. Make them normal.” Mental retardation is dreaded by pregnant women. There is prenatal testing for it, research about how to avoid giving birth to a child with DD. All this implies the truth: we don’t want our children to have to face obstacles to happiness. We don’t want to have obstacles to our own happiness, either.

But what I have learned from Nat is that you never know what your happiness is going to look like until you open that box. Happiness might come in the shape of a Down Syndrome baby, but you won’t know until you get to know him. Happiness might come from watching a struggling child learn to swim and get the gold at Special Olympics. Happiness is not always giving birth to the Harvard-bound baby, although that may look like the more obvious path to happiness.

We think we know what the brass ring looks like, but the truth is, sometimes it’s not brass, and sometimes it’s not even a ring. The trick is to keep trying to recognize yours, and grab onto it when you can.

A good friend who is a writer and very beautiful once told me that “a book tour brings ’em out of the woodwork.” The theory is that people somehow become highly attracted to one who is in the spotlight, on one’s own, and apparently successful. It doesn’t hurt that when one goes on a book tour, one generally spruces up a bit: new clothes, attention to hair and make up. The travel, though inconvenient, is exciting. Doing interviews, giving talks, being on television, and going to parties, make the endless slogging that comes with the necessary promotion all worth it. Best of all, one comes into contact with so many different, interesting people. And sometimes those people are not shy about telling one about their admiration.

This, of course, can be intoxicating, seductive, and pose challenges to even the most happily married women.

The big question is: what does one do about such attention from others? This New York Magazine article offers an intriguing perspective on a potentially t(horny) problem. Hey, we’re all complex human beings, after all. Aren’t we?

(Thanks to Halley’s Comment for the magazine link.)

The 12/4 Boston Globe Sunday Magazine ran a piece on vaccination and autism by Dr. Darshak Sanghavi. The bit that really got under my skin, if you will, was the following quote:

AUTISM FRIGHTENS PARENTS more than almost any disorder, since it implies that the child can never function independently in society and may never fully reciprocate, or ever fully appreciate, expressions of love.

I think that this quote does more to reveal the bias of Dr. Sanghavi than any reality about autism parenting. I’ll admit that when I first heard the diagnosis “autism” when Nat was three, my heart stopped, and a part of my life closed in on itself. But looking back I think a lot of that was due to the lack of information available to me at the time, and the plethora of autism stereotypes, such as from the movie Rain Man. (Don’t get me wrong; I think Barry Levinson and Dustin Hoffman did a wonderful job in portraying a form of high-functioning autism, but what I did not know is that in this day and age a person with Ray’s abilities would probably not be institutionalized the way Ray was.

When I first got the diagnosis, I hastened to the library, only to find the very dry and hopeless DSM (Diagnostic-Statistical Manual, used by doctors to diagnose) and wanted to slash my wrists. Luckily for me, I also found the wonderful Sean and Judy Barron’s There’s a Boy in Here, in which Judy decides for herself what is what about autism, and plows ahead to help her son in the face of the prevailing theory at the time, which placed the blame on her, the mother.

What we need is more honest and positive accounts of living with autism. Parents need facts that help them strategize and advocate for their kids, not horror stories and hopelessness. They need hugs and encouragement. Autism need not be a death sentence. Our children were not stolen; we just have to look a bit harder to see them.

As the Peanuts gang sing, “Christmas time is here.” And one theory bouncing around the blogwaves this season is that Yukon Cornelius was up to something else when he licked his pickaxe in Rudolph the Rednosed Reindeer. Boing Boing says it is because there is a peppermint mine in an original version, and Cornelius realized that it is this he has been looking for all the time, not silver and gold.

I say, “Balderdash!” Spare me this Scroogelike revisionism! Even if Rankin himself told me that the original didn’t contain Sam the Snowman (apparently it didn’t!) I would cover my ears and say, “blah, blah, blah, I can’t hear you!” After all, even Count Leo Tolstoy had many versions of War and Peace before it became the War and Peace we all know and love (anyone remember A Decembrist Story?).

Cornelius is licking for silver or gold. Hence the song. Hence Cornelius’ entire raison d’etre, his modus vivendi, you name the pretentious idiom. I’m sorry; you can’t just introduce a peppermint twist forty years later. This bumble just don’t bounce.

I was on New England Cable News’ “News Night with Jim Braude” yesterday. This was one of the most enjoyable interviews yet. Braude is a terrific, dynamic interviewer with a head full of questions and intelligent conclusions. He actually made me laugh several times on camera, quite a feat for me because I am usually concentrating too much on the questions to even get near a smile. You can watch it on my Watch & Listen page.

These sections from my work-in-progress on scattered throughout the blog. To get the entire book, you’ll have to hope a publisher will buy it…

Nick looked at his bowl of chili. He heard the clatter of Mommy setting down the other bowls. Slam! Dan took his seat, on the opposite side of the table from him. The air shook around him and went deep into Nick’s ears. He lifted his arms in the air and opened and closed his hands, to push the noisy air away. “Hew, ssh,” he said, which also helped quiet the air.

Henry slid in between them. Daddy was still not there. Nick looked at Daddy’s empty chair. A question-feeling formed in his mouth. He took a quick sideways glance at Mommy, putting her own bowl down and pulling out her chair.

“Whatisitnick?”

Nick turned away from her. He did not want words right now. He wanted to remember his question. But he could not.

“Nick. What. Is. The. Matter.” Said Mommy, bringing her face close to him. “Why. Aren’t. You. Eating.”

Eating. Nick smelled his food deeply. “Yes,” he whispered. He wanted to eat. His tummy was empty and making noise. It had felt like that for a long time. He did not eat his lunch today, and Maureen wasn’t there, so he did not get chefboyardee. Maureen always made him that lunch if he didn’t like the lunch. But today it was Laura and Laura did not know about chefboyardee and Nick could not remember how to tell her.

The chili smelled hot and brown. Nick liked hot and brown smells. Chili, chocolate, leaf piles, and Mommy’s garden were all hot and brown smells. But Nick could not eat because the chili had no powder on it. He looked for his spices but they weren’t there.

Suddenly Henry stood up. He walked behind Nick’s chair, into the pantry. He came back with two small bottles, the chili powder and the onion flakes. He set them down in front of Nick without a word.

“Oh, sorry, Sweetheart!” Mommy said.
Nick turned the bottle upside down and coated his beans with the red, dusty spice. Then he did the same with the onion flakes.

“Ew, how can he eat that?” asked Dan disgustedly.

Mommy smiled. “I really don’t know, Danny. I think he likes the way it feels in his mouth, don’t you Nick?”

Nick kept chewing. He did not understand what Mommy had just said, he had only heard Dan shout. But even though his ears hurt, the powder on the beans brushed his tongue like butterfly wings and he smiled.

I have friends on both sides of the issue of the autism divide. I read both arguments (cure vs. acceptance) and I am moved by things both say. I am very frustrated with the heat around this issue. It is a great, yawning chasm that promises devastation to any who fall in.

So, here I go!

Why is this such an acrimonious issue? Why does the idea of autism being curable rankle some so much? And why do the curebies see red when the neurodiversities disagree with them?

I think that for the neuro’s it is an insult to imply that autism is something that should be cured. They want to be who they are. That is understandable. But they are so often high-functioning, no wonder!

My question for them is: What if PECs and FC and all the other modes don’t really work for a very severely autistic person? What if that person really does want to “come out?” What if neurodiversity is really only applicable to very high-functioning, i.e., communicative, people?

For the curebies, it is sick not to want to help a struggling child “get better.” They have anecdote after anecdote supporting biomedical interventions. They have found DAN! doctors whom they trust. They have found traditional pediatricians whom they cannot trust because they dropped the ball on their kids. They feel that the CDC, et al., have lied to them about mercury and poisons in the well.

My question for them is: What if you are wrong? What if the treatment you are giving your child is doing nothing or actually hurting? What if, by implication, you are giving your child the message that he is not okay as he is? What about your family life? Is it completely consumed with autism and eradicating it? How do you have any fun?

The big question is: Is it possible for us all to drop our anger at the other side and focus on what we believe is best for our own kids?

This, perhaps, is the beginning of my novel (see posts below), and it starts with Natalie, the mother.

Chapter 1

“It’s from this that you get your strength, Katie Scarlett. The red earth of Tara.” So said Gerald O’Hara to his daughter in Gone With The Wind.” Back when Natalie first read it, at the age of 13, she did not give a damn about earth. She wanted to learn all about Scarlett. She wanted to be Scarlett. She had swept her hair off her face like Scarlett. She had batted her green eyes like Scarlett. She had flirted like Scarlett.

But 28 years later, forget Scarlett, Nat wanted Tara. Or, more accurately, to have soil like that. All that space for planting! Lately she had been craving the dirt, like some sort of earth-worshipping pagan, or a geophasiac. Almost wanted to eat it, like she had when she was a kid. It was late winter, and there was not a spot of green in sight, and the soil was fast asleep, gone gray with numbing cold. She hated it, like so many people did that time of year.

Gardening was never so important as in the late winter. That was when people look out the window and pretty much all they would see is brown, broken up by bits of gray. Maybe if they looked hard enough one morning, in a full-sun spot, they could suddenly notice a bulb shoot poking up, like a green vulva folded, waiting. Those green nubs made Nat cry, the first time she would see one of them. She would then search the ground for more, like a mother missing her children.

So far, though, objectively, that winter had not been a particularly hard one, for Boston. There had been no snow in December, or January, but it had been a very wet, snowy February, the intensity of which had worn everyone down. Simply because of February, everyone went around saying what a hard winter it had been. It was like that there. “Hardy” New Englanders did not actually exist, Nat had found. They are an opinionated, difficult-to-please group, prone to saying, “You don’t like the weather? Just wait five minutes.” And they thought they were the wittiest part of the country for it.

But those who lived in Belleville, Nat’s town, which was an urban suburb in the Masssachusetts, knew they were in the wittiest part of the country, aphorisms aside. Those who discovered Belleville usually fell in love with it and tried to stay, despite ridiculously high rents. The three-story Victorian townhouse apartments and condos attracted couples to the town. Then, after the first kid came along, they usually looked for a bigger place, a two-family maybe, something with a little yard, a postage stamp garden. If they could, they would buy in Belleville, not the more affordable, gorgeous Emerald Plain, which was actually a part of a larger city. Oh, the kids got quiet streets and cute playgrounds but when they got near five years old, they were going to crowded city schools or they’re going to private school. You buy in Belleville, you pay more, but you got one of the nation’s best school systems. That’s where Nat came in. She was a realtor, and had done really well selling property here.

Nat’s little piece of Belleville was in a neighborhood called Belleville Point, an area of densely settled Victorians that were mostly divided into condos, but with one or two single-families remaining. She owned a single-family, having bought early in the game (not knowing at the time that there was a game) eighteen years ago with her then husband Todd. In the dead of winter. “Dead of winter,” a perfect phrase for what it was. Whoever dreamed up that one had no knowledge – or patience for – the “winter garden” mentality. How incredibly pathetic Nat found the idea of “winter interest” to be: black bark against white snow, red berries, statuary covered with snow. All lonely, cold, stark images; not at all what a garden should be about: living, moving, green, warmth.

Nat let the curtain fall on the smudgy glass of the dining room window. She stared at the ruby red silk that puddled at her feet, like a river of blood. Her reflection in the oval mirror to the right made a flicker of movement, and so she turned from the window to the mirror. She’d spent a lot of time the past year, in front of the mirror, not planning to be there but somehow ending up there, looking without actually seeing herself. Then she would focus really hard on her reflection, grimly satisfied with what she saw, then puzzled by her vanity. The thick straight brown hair, hardly any gray. Green eyes; she still thought them her best feature. Skin the slightest bit pouchy underneath, and under her jaw. Weight good. Not too many signs of being forty-one; and yet she was now single. Where was the sense in that?

Just before the divorce, Nat had decided to become more active in the boys’ schooling – at least in Henry and Dan’s — unlike the early childhood years where she had been so busy trying to afford their dreamhouse. Eighteen years ago, when they had first married, buying a gorgeous old house was all they could think about. So she chased that dream, and had her babies kind of without thinking, one after the other. The youngest, Dan, was far more planned for, plotted for. But not Nick and Henry, of course.

The boys were definitely the best of Todd and her. Todd. Who marries a guy named Todd?, she thought. She had, in total rebellion from her parents, which came late, in her twenties. Todd Sherman, tall, blond Protestant from Vermont, whom she had met in grad school at Harvard – they were both getting their MBAs. Nauseatingly clichéd mid-eighties career tracks. And what was Todd going for, when he fell for her? A little excitement in his dull WASPy life, perhaps. And they had had that, to be fair. It was good for a while. When the boys were little, cute, fresh-smelling. But then they became more complicated, especially Nick. And Todd, although a good father, could not bear it. He had felt betrayed by it all. Nat knew it, though she never said as much. Todd was no Magic Daddy. But it was really only towards the end of the marriage that he realized he really wasn’t up to it, that he wanted a quieter, simpler life. A neater life. No other woman (or man, thank goodness). No daily living with a rebellious kid. Just silence. Just work and hobbies. Poor guy. Schmuck.

What would you do if you knew that your unborn baby was carrying a disease? What would I do? This issue, discussed in the November 20 New York Times has sparked a new debate in abortion and prenatal testing. The answer is very different for me now than it would have been sixteen years ago, when I was pregnant with my first. This is still a matter of personal choice in our country, but that does not stop me from wondering where I stand. My feeling is, how would I know and really be able to trust that any condition was so acute that I would not be able to give that child a life? On the other hand, if the child suffered from his disease, what then?

Is it better not to have been born?

How could I make that choice for him?

But how horrible to be someone else who does not feel the way I do, and has no choice in the shape her life must now take?

With such testing, where will people draw the line between eliminating fetuses carrying incurable, fatal diseases and fetuses who are disabled in some way?