Category Archives: Deep Thoughts

Although I try to avoid them (I don’t try too hard), some “big picture” thoughts about autism and this blog are bound to appear. I’ll categorize my deep thoughts here.

Investigative Journalism, Part Two

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In yesterday’s post I described three articles that have appeared in the Chicago Tribune. The first, published two years ago, questioned the scientific underpinnings of ASD treatment and profiled the case of an apparently (?) recovered seven-year-old boy whose father contended that the boy would have progressed without, and may have suffered (yet unmanifested) harm from, biomedical interventions. The second and third articles, published last month, reported that this father’s complaint against Dr. Anju Usman, one of the boy’s treating physicians, had led to medical board charges against her. They also provided the detail that the boy’s treatment had been the subject of a divorce proceeding in which his mother, who supported the biomedical interventions, had lost custody.

Today I’m writing about the effect that such an article has on a parent undertaking a recovery journey. Specifically, this parent. Me.

I’ve made no secret that we’ve chosen an arduous path. Treating ASD biomedically means we’re raising Martin inconveniently. We’re navigating 21st-century America without processed or packaged foods, tap water for drinking or cooking, a microwave, grains, sugar, non-organic products, or restaurants. Martin swallows a lot of supplements—I’m not going to claim “six pills at once,” like the father in the Tribune article, but enough—and participates in 16 HANDLE exercises daily. We do RDI. It’s so much that, any moment when I’m not marveling some new achievement, I’m probably contemplating giving up.

Which means that during the past three months I’ve had a lot of time to contemplate giving up.

When I do research about Martin’s treatment, I seek out multiple sources and do my best to weed out bias, hyperbole, and blanket statements. When I speak with Martin’s practitioners, whether Track One or Track Two, I attempt to engage in dialogue: question, answer, challenge.

A mainstream-newspaper “investigation” is a different sort of animal. Because of their stature, we count on the big sources to do our homework for us, to examine every side and summarize fairly. To question, answer, and challenge without our participation. I studied magazine journalism as an undergraduate, and I remember this rule: When you’re going to write a major article, for that moment in time, you must become the world’s leading authority on your topic. In my mind, before the Chicago Tribune reporters sat down to write their original piece, they should have been the world’s leading authorities on biomedical ASD recovery.

And when the world’s leading authorities say a process is “dubious” and “unsupported,” that’s a pretty good reason to quit, right? Especially if the process is taking a toll on you like none you’ve ever known.

I admit that I hesitated, even, before sending last month’s Tribune articles to Adrian. I feared that they might make him want to quit. (A fear unwarranted: I sent them, we discussed, and Adrian remains as dedicated to Martin’s recovery as ever.)

And now I worry that those articles, and the actions of the Illinois medical board, might make other families want to quit. Goodness knows we’ve got the deck stacked against us as it is.

I can’t tell other families whether to continue biomedical recovery or to quit. I would never try. Heck, I don’t even know where my own family’s journey will end.

I can say that I don’t think the Tribune reporters became the world’s leading authorities, or if they did, they failed to demonstrate that. I know at least one family who allowed one of the reporters to meet their fully recovered son, whom Dr. Usman had treated. I saw no mention of any such families in the articles. I saw no investigation into whether (as I thought the articles may have hinted) the father’s complaints simply arose within a divorce context, or were instead prompted by that context. The Tribune presented the incompetent actions of rogue DAN! doctors; it made no mention of the compassion of competent biomedical-recovery practitioners.

All in all, I thought it was lopsided reporting.

But to a parent who’s desperate, and exhausted, lopsided reporting might just suffice to make you throw in the towel.

That, I think, would be a sorry effect.

Investigative Journalism, Part One

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[This post has become long, so I’ve decided to break it into two parts, to avoid losing readers halfway. The second part will appear tomorrow.]

Several readers now have asked my opinion on a recent Chicago Tribune article about Dr. Anju Usman.

I have an opinion.

Let me start by saying that, although I know her work by reputation and from speaking with parents whose children recovered under her care, I have never met Dr. Usman. She is not Martin’s excellent Track Two doctor. I lack any particular expertise for interpreting this story. I derive my understanding of the facts from the Tribune (what there is written, and what thence is missing), and have formed my opinion from own experience.

Here is the Tribune saga, based on what I’ve read: Almost two years ago, as part of a series called Dubious Medicine, the newspaper conducted biomedical ASD interventions and published its findings under the title “Risky alternative therapies for autism have little basis in science.” The article highlighted its conclusion up front, namely, that “many of these treatments amount to uncontrolled experiments on vulnerable children. . . . And though some parents fervently believe their children have benefited, the Tribune found a trail of disappointing results from the few clinical trials to evaluate the treatments objectively.”

The role of human-interest centerpiece in the Tribune’s initial story was played by a then-seven-year-old Chicago boy, a years-long patient of Dr. Usman and of Melbourne, Florida’s Dr. Daniel Rossignol. The article begins with the boy’s father, who opposes biomedical intervention, bemoaning his son’s ability to swallow six pills at once. Near the end, however, after its indictment of autism recovery science, the article takes a befuddling turn. The boy at age seven is described as “playful, funny[,] and outgoing”—which to me sounds a lot like “recovered.” The boy’s unnamed mother, according to the Tribune, “declined to be interviewed but [] said in court documents that she believes the boy’s many alternative therapies benefited him [and] argued that her son’s treatment must continue on a regular basis.” The father, by contrast, “said he [thought] his son . . . would have progressed developmentally without any medical treatments” and filed complaints with the state medical boards against Dr. Usman and Dr. Rossignol. He told the Tribune, “I worry very much. There may be latent physical harm. We don’t know.”

Fast-forward to last month. The Tribune ran back-to-back articles on Dr. Usman. The first, “Illinois regulators seek to discipline autism doctor,” reported that this father’s grievances had led to the Illinois Department of Financial and Professional Regulation charging Dr. Usman with “unprofessional, unethical and/or dishonorable conduct” and seeking suspension or revocation of her medical license. It noted as well that the father had in fact sued Drs. Usman and Rossignol, a case that apparently is pending in the Circuit Court of Cook County.

The second article, “Illinois medical board files complaint against star autism doctor,” was similar to the first, with some more detail on that complaint. More interestingly, from my perspective, it included this detail:

The treatments that [the father]’s son received were also the subject of a bitter divorce and custody battle between [the father], who vehemently opposed the therapies, and his wife. She had been a proponent of the therapies for the boy, according to divorce court records. [The father] and his wife divorced. [The father] was awarded residential custody.

If any of the feared “latent physical harm” had evinced itself in the boy, the Tribune makes no mention thereof.

The Tribune articles supply much potential fodder for this blog—like the science underlying autism recovery, and laboratory studies versus field work; how prosecution of heterodoxy curtails the ability to pursue alternative treatments; reporters’ influence on the way we interpret the world. (The also supply much fodder less appropriate for the blog—like the validity of a medical-malpractice lawsuit absent any manifested harm, or the ways a divorcing couple can entrap third-parties into their own anger.) I’m not going to pursue any of those topics.

Instead, tomorrow, I will address the effect that stories like the Tribune’s have on me and, I would guess, others in the thick of a biomedical recovery journey.

Feelings, Nothing More Than Feelings

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Twelve years ago, I brought my cat William to the veterinarian and said something was wrong with him.

“Is he eating?” the vet asked.

“Same as usual,” I said.

“Using the litter box?”

“Yes.”

The vet slid her hands along William’s sides, under his belly. “How’s he acting?”

“Seems fine.”

She bent back William’s ears and peered inside and finally asked, “Well, what’s the problem?”

I told her I didn’t know what the problem was. I couldn’t identify anything particularly different about William. I just had a feeling that something wasn’t right.

I find myself operating on the “feeling” principle a lot these days. This morning, after Martin left for school, I had a feeling that he is improved, howsoever marginally. (“Improved” meaning “closer to neurotypical.”) I can’t say why. We didn’t have an outstanding breakfast; he refused to eat anything but the pear chunks from his bowl of buckwheat cereal, pre-soaked walnuts, and pear. (I make gluten-free cereal twice per week, under the “needs a few carbs” rule.) He was mostly quiet, he didn’t want to use the potty, and he resisted his HANDLE exercises.

We did have a breakthrough on Saturday. Friends had brought their daughter, who is a few years older than Martin, over to play. At some point the little girl got hold of her father’s iPhone and opened an app by which she could tap the screen to play music. She tapped away, and the iPhone sang a disjointed cacophony of notes. Martin, sitting nearby, watched the activity with interest but also seemed confused. Twice he turned his gaze toward me, to read my facial expression about the iPhone performance. One symptom of autism (and a symptom that Martin shows) is lacking ability to read facial expressions, and/or lacking interest in doing so. Martin looked to me twice, not once. It was no accident.

Funny, though, I didn’t have a feeling on Saturday that Martin was improved.

Today I do.

Who knows? It’s easy to attack intuition. On a rational level, I can discredit my sense that Martin may be improved. On a gut level, the feeling colors my whole day. I feel like Martin’s doing well, so I do well.

Twelve years ago, the vet found nothing wrong with William by appearance or outward physical condition. Only with her stethoscope did she discover that, by her estimation, William’s heart was beating more than 400 times a minute. My hunch had led us to the misfire between the upper and lower chambers of William’s heart that that eventually would kill him.

When it comes to kids—human or feline—I think I know my own. I hope.

So Do I Still Have to Be Honest?

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This was to be the day. I’ve been thinking about it all week, and today I was going to post a disclosure—a confession. It would have read something like this:

We’re not making progress, at least not that I perceive. We got off to an explosive start: Martin zoomed from restlessness to sleep, from lethargy to energy, from drifting to engagement, from low muscle tone to standard body-type. Then, late in summer, the advances dwindled, and Martin backslid in attention and language.

It’s almost winter now, and I’m wondering if we’ll get back on track and whether the burden of an ASD recovery journey really makes sense. I’m even ready to admit that, had I felt this way in August, I would not have started blogging. It’s too difficult, exposing your own aspirations and vulnerabilities on-line (even if anonymously) when the very subject you’re blogging has beaten you into the gutter. Back in August, when I wrote my first post, we weren’t chugging along like we once had been, but it just felt like we’d pulled into a rest stop on the recovery highway. A check of the map, maybe a snack, and we’d be back on our way.

But then the ignition refused to turn. Two or three months later, the biomedical car remains stalled, and Triple-A has not shown. I’m stuck.

 That’s approximately the ode to frustration I had in mind to post.

By now, if I’ve set this up properly, you’re asking why I say what “was to be.” Why am I quoting the ode to frustration, instead of posting it directly?

The answer is that Martin climbed out of bed this morning and said, “Hello, Mommy.” When I plopped into the chair in his room and asked if he’d like to sit on me, he responded, “Sit on you,” getting the preposition correct if not the idiom. He asked to use the potty and did his business without clawing at his legs, which he’s been scratching raw from yeast itch. When I helped him get dressed, he put his arms into his sleeves and then—instead of letting the shirt stay bunch around his chest, as usual—he tugged the hem down over his belly, looking like any neurotypical three-year-old getting dressed. He glanced down with each step as we descended the stairs to the kitchen. He ate his waffle with a fork. When I asked if he wanted more, he said, “I want more waffle.”

It was a good morning.

True, it was just one good morning, and later this afternoon Martin got spacier.

As it turns out, for now, one good morning was enough. I decided not to let my icky desperation take the starring role in today’s post.

Still, I had to reveal what I’d thought about writing. That’s my commitment to honesty here.

This morning I thought I heard the engine try to turn. I can’t wait for tomorrow. We may leave this rest stop yet.

Intruders in the Sanctuary

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We brought Martin to the Woodstock Farm Animal Sanctuary today, in celebration of a friend’s birthday. We played with ducks, chickens, turkeys, lambs, goats, pigs, and cows. Usually I love to do stuff like this, to admire animals whom society at large treats as commodities for food/clothing/additive production.

It’s more difficult now, of course, because Martin is eating meat. Merriam-Webster defines a vegan as “a strict vegetarian who consumes no animal food or dairy products; also: one who abstains from using animal products (as leather).” Abstaining from using animal products entirely is, more or less, impossible; living in this world demands using products made by others, and too many of those products—film, computers, pain relievers, wines, McDonalds French fries—contain, or are manufactured with, animal parts for one to avoid them. But for many years I’ve done pretty well, at least on the big stuff: meat, eggs, dairy, leather, wool, and so forth. For the most part, I’ve avoided the stuff you really cannot have without using animals.

Not anymore. How can I press my forehead against a steer’s and stroke his muzzle, when this morning Martin ate leftover hamburger with breakfast? How can I allow a turkey to nestle between my shins, when our car contains a Thermos of turkey-neck broth?

I’m glad that we’re managing Martin’s dietary changes without resort to caged, agribusiness animals. I’m glad I’ve visited the farms where his meals grow and die and observed that, other than the part about being slaughtered early, their lives aren’t that different from those of the sanctuary animals. I’m satisfied that, as Adrian remarked this morning, we’re using meat for a distinct, defined purpose (dense protein and easily digestible fats to hasten Martin’s recovery) and not out of laziness, or like a celebrity chef determined to sample as many varieties of flesh as possible, only for the sake of doing so.

Beyond those comforts, I’m still having trouble navigating the decision. I need to envision an end-point, when this chapter closes and Martin, recovered, returns to being a vegan. I know he may not always stay that way; as he matures he’ll make his own choices. Still, I can try to point him in the direction our family prefers, which I don’t feel I’m doing at the moment.

As for right now, I need to find a way to apologize to all these animals. I’ve decided to add the money we spend on Martin’s ghee, eggs, honey, and meat and send an equal amount to a farm sanctuary with outreach/education programs.

It’s a start. Kind of.

Do You See What I See?

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Samara has been ill this week, and not working. Last night after Martin went to sleep she came for a visit and brought new toys and books, including two bathtub boats and a ride-in fire engine. We left the boats on the dining table, and the fire engine in the front hall.

This morning, as Martin sat at the kitchen counter waiting for breakfast, he spun on the barstool. He likes to spin, and I tend to assume it’s a self-stimming behavior. (Or just plain fun. I went ga-ga for my Sit’n Spin as a kid. Remember those?) Only a quarter-turn into his spin Martin leapt from his barstool, ran to the dining table, and seized the bathtub boats.

Most of our apartment—kitchen, den, family room, front hall, dining area, reception salon (that’s a couple chairs and coffee table that I’m making sound as fancy as possible)—comprises a single, large space, so there is a lot to observe, and the dining table stands at least fifteen feet from the kitchen counter. Moreover, the dining table was stacked with books, papers, a laptop, several items waiting to be Freecycled, and sundry junk, so the bathtub boats were kind of obscured. Certainly non-obvious. I would not have noticed them; I don’t notice unfamiliar items in my home until they (1) trip me, (2) bite me, or (3) emit an unpleasant odor. But Martin, somehow, spotted his new toys in a partial second. Before I even realized what he was doing, he was on the floor playing with them. He refused to return to the kitchen counter until I told him to bring the bathtub boats along.

Now I find myself wondering: When Martin is spinning on the barstool (before we progressed with biomedical intervention, he used to spin himself without a barstool, too) or running, apparently haphazardly, around the perimeter of the apartment, is he actually noticing—processing—his surroundings at a rate faster than I could?

Earlier today I was driving the West Side Highway with Martin when a truck passed and pulled directly in front of us. From the backseat, Martin said, “That’s a piano truck.” I looked up and saw, written on the back of the truck, a company name along with “piano sales and service.” There was no picture, only lettering. Holy crap! I thought immediately. Martin can read. I have one of those autistic genius kids who just learns everything on his own. I was getting ready to phone Adrian with the miraculous news when the truck made a left turn and I saw, on the side that must have faced Martin when the truck passed us, a gigantic picture of a piano.

I do have a tendency to get carried away like that. So I’m trying not to take too much from Martin’s spotting the new toys mid-spin. In fact, I’m trying to see two sides of the event. It may demonstrate that Martin possesses a strong awareness of what’s around him and is not vacationing in Martinland as often as I sometimes think. On the other hand, it may suggest that Martin has a hyper-sense of order and, even in our disarrayed home, perceives immediately what changes from one day to the next. I’m going to keep an eye on Martin’s interactions with his environment and see if I can figure out whether it’s the former, the latter, or a combination.

Anyway, after I let him bring his bathtub boats to the counter, Martin ate his scrambled quail eggs and sweet-potato fries peacefully. About ten minutes later I went to the bathroom. When I returned, the barstool was vacant again.

This time I found Martin in the front hall, sitting in his new fire engine.

It’s Like a Cruise Ship, But This Ain’t No Pleasure Cruise

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I’ve expressed some frustration at feeling stalled lately. I’m looking for the leaps of progress we saw early in Martin’s recovery, when we sped from not sleeping to sleeping, from low muscle tone to good muscle tone, from lethargy to energy. Nothing so monumental has happened for a few months. Since before I started blogging, in fact.

For my own sanity, I need to talk about what’s heading in the right direction. We’ve got the answers to open-ended questions, as I posted yesterday. At Martin’s bedtime this evening, he and I exchanged a few words in a manner that mildly resembled a “How was your day?” conversation. His joint attention is flourishing; frequently he checks my face to see if I’m listening. (When he wants me to be listening, that is. Often enough he chats for his own amusement, no audience desired.) His relationship-understanding may have improved lately. He’s taking better notice—I won’t claim obedience—when I speak sternly (“No! No going in Mommy’s office.”). And earlier today, I took advantage of the Muppet Honkers performing “Honk Around the Clock” to make up a silly dance. Martin diverted his gaze away from Sesame Street (victory!) to me (victory!), understood that I was joking (victory!) and laughed (victory!).

Amidst these tiny successes, what bothers me is the big deal: the lack of general attention. Name responsiveness remains low for the moment, and Martin is rarely “with you” unless it’s a one-on-one situation. His teachers say he needs constant monitoring to stay focused in class. When he and I are playing, I find him about half the time talking to me, and about half the time just talking.

Over the past couple days I’ve sensed some inkling that the attention might be changing direction, maneuvering ever so slowly. It’s too soon, though, to get my hopes up, so I’ll just leave that notion on the table and follow up in a later post.

Remember the movie Titanic? Bill Paxton’s character Brock Lovett says something like, “The ship’s too big with too small a rudder. It doesn’t corner worth a damn.” We’re caught these days in oceanic currents of environmental toxins, EMF’s, chemicals, induced labor, processed mush disguised as food. And here come Adrian and I, trying to divert all that with our little toolbox of therapies, supplements, and organic foods.

It feels like steering a cruise ship with a rowboat paddle.

The A-ha Moment: Part One

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Parents of spectrum kids fit into three rough categories:

  1. Haven’t heard of biomedical recovery / think biomedical recovery is quackery. These parents may rely on behavioral therapies, sleep assistance, or pharmaceuticals to cope with ASD, but they don’t make special efforts regarding diet or medical interventions.
  2. Are doing some biomedical work. These parents buy into those limited biomedical processes that “studies have shown” to help, such as the GFCF diet or oxytocin hormone, but they don’t do the whole DAN! protocol or anything else considered radical.
  3. Have dived headlong into recovery. Obviously, I fit into this category. Let’s call me, and others like me, the “don’t care if it’s been proven, as long as it’s not going to hurt” crowd.

I’ve tried to emphasize in this blog that, although Adrian and I are in Category No. 3, I’m not anti-Category No. 1 or -Category No. 2. To the contrary, I know that we’re all trying to do what’s right for our kids. I am yet to meet the parent who says, “I don’t think biomedical recovery works, but I’ve decided to put my family through all that the process entails, just for kicks,” or, “I think that biomedical recovery works, but I’d rather not recover my son.” Parents love their children and come to their own decisions on issues as sensitive as treating autism. I—especially given my experience with Martin’s birth, when my wishes were not respected—honestly, wholeheartedly, and unreservedly respect those decisions.

As for me and Adrian, we skipped Category No. 2. We jumped from Category No. 1 straight to Category No. 3, and we did so within less than one week. Over a series of three posts (and maybe a postscript), each titled “The A-ha Moment,” I’m going to describe what prompted such a rapid transformation.

It was early September 2010, thirteen months ago, when Adrian and I first suspected that Martin’s development might be not only slow, but beyond the normal range of variance one expects in toddlers. In October, our friend, an EI professional upstate, evaluated Martin and said, informally and unofficially, that his condition looked like autism. By November, New York State (which does not use the “autism” epithet on young children) had labeled Martin “PDD” and accepted him into EI. (In spring 2011, the Big Imposing Hospital’s pediatric neurodevelopment department confirmed what was clear to everyone else and gave the official diagnosis of autism spectrum disorder.)

From October 2010 until February 2011, Adrian and I were Category No. 1, to the side of “haven’t heard of biomedical recovery” more than “think biomedical recovery is quackery.” I think I knew vaguely that some controversy existed over the actress Jenny McCarthy and whether her son had recovery from autism, or whether he’d never had it in the first place. (I could not then, and still cannot, identify this actress by sight, or name any role she’s played. I’m not much of a television or movies person. I do, however, now know Jenny McCarthy to be an activist in favor of treating ASD biomedically.) In any event, I had heard, and I believed, that behavioral therapy, and specifically ABA-based therapy, provided the best hope, or even the only proven method, for making progress against autism. We got Martin behavioral therapy. We got him hours and hours of behavioral therapy daily: two hours of home-based ABA, two hours of center-based ABA, 30 minutes of speech therapy, 30 minutes of occupational therapy, 30 minutes of physical therapy.

(Before I write anymore, I must say that all this was provided by New York State. I am deeply grateful to live in a state that values Early Intervention and provides this level of service to children with developmental delays. Without a doubt, EI makes a great difference for a great many children.)

Martin made some initial gains with all this therapy. He sat still longer. He sometimes responded “yes” to questions, instead of repeating the inquirer’s last words. But several issues persisted that seemed more medical than psychological. For example, lethargy often overcame Martin, and he lay on the floor, absentmindedly pushing a toy. He bent at the waist and pushed his hands into his distended belly as if he was experiencing gut pain. And then there was sleeping. Sleeping was, pardon the pun, a nightmare. Martin almost never slept through the night. It could take him 90 minutes or two hours to fall asleep, and usually spent three or even four hours awake between 11:00 p.m. and 5:30 a.m.

It bears mentioning that Adrian and I are lawyers, are fussy and aggressive, and are used to getting what we want. We wanted Martin to improve. Adrian read a lot during the early months after Martin’s diagnosis, mostly mainstream sources like books on behavior. He learned that a gluten-free diet seemed to help some kids on the spectrum, though (from what he’d read) no one was sure why. We resolved to try phasing gluten out of Martin’s diet in January.

We did, indeed, begin phasing out gluten in January, but we never finished the process. Or more accurately stated, we finished phasing out gluten in the context of doing a whole lot else.

That is, in mid-January, Adrian handed me an article he’d printed from the internet. From a mainstream source, a reasonably well-known doctor who reports on medical issues.

The article told the story of a six-year-old boy who, four years earlier, had regressed into autism and become non-verbal.

The boy had recovered.

You would never know, the article stated, that this boy ever had autism. He was now bright and engaging, and a typical grade-schooler.

The article was not long. With only bare-bones analysis, it spoke of “triggering” factors, and how finding what’s triggering autistic symptoms can help to reverse them. This hit-or-miss approach, though painstaking, could offer new hope for the estimated 1-2% of American children with ASD.

To me, the article, the story of the recovered boy, made eminent sense. The light bulb flickered. Autism did not just happen to my son. Something caused, something was still causing, him to have these medical symptoms, which in turn were tied to the developmental delay.

I tacked the article onto the bulletin board in my home office and went to Adrian.

“There’s something we’re missing,” I said, without a trace of doubt. “There’s something more we can do.”

In that moment we left Category No. 1.

Parenthood=Worry. I Can’t Say Anything to Change That. I Don’t Want To, Either

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As I’ve mentioned, Adrian and I have chosen to reveal Martin’s autism only on a limited basis. We tell intimate friends and confidants, and also other parents with children around Martin’s age, who can easily spot the differences in his development.

There are a few exceptions, mostly persons who ended up somehow in the “need to know” circle or who found out coincidentally. My hairdresser, whom I visit four or five times a year, fits this latter category. I don’t even remember how anymore—I may have accidentally given the real reason when I had to move a hair appointment for one of Martin’s therapy sessions—but she knows that Martin gets special attention for developmental delays. Not specifically autism. “Developmental delays.”

She also has recently had a child herself, a baby boy.

I got my hair cut this week. The hairdresser and I chatted superficially. After a while she asked after Martin. I said he’s in a new school, and it’s going well, and he’s so big, and yes, he’s getting better. The usual. I concluded quickly and tried to push the conversation toward Will and Jada Pinkett Smith’s home design choices, which were featured in the Architectural Digest in my lap.

“It’s heinous,” my hairdresser responded as I pointed to Mrs. Smith’s meditation room. “How often do you think they use that room?” Then she lowered her voice and leaned toward me. “So, like, how did you figure it out? I mean, what should I be looking for?”

I stiffened. “Oh, just, you know.” Pause. “Just—you know. We noticed that he couldn’t do things that other kids could. He repeated what we said, instead of making up new sentences. Stuff like that. Look, there’s a cat in the meditation room.”

“So when did you start seeing he was different? Was it right away?” She kept angling for information, for the harbinger of whether her son too would bear the curse of “developmental delay.”

I have no desire, none at all, to serve as neurotypicality guidepost or cautionary tale. I am hoping that my readers take encouragement from Martin’s progress toward recovery. As to the other end of this journey, however—as to our discovery of Martin’s ASD and its subsequent diagnosis—I do not want our experience exploited as example. I can’t fully explain why this is the case. Indeed, before we knew Martin had any disorder, I too sought guidance. I can remember asking my mother, regarding a severely autistic boy she knows, what the signs were and when his parents observed them. I worried about autism. Parents today worry about autism.

I think I’ve become jealous of those who have only the worry, not the reality. Now that Adrian and I belong to the subset of parents with autistic children, I’m more interested in helping those in the same boat, not in reassuring others that they won’t also be set adrift.

I suppose that’s not very nice of me.

But what would I tell a new parent, anyway? To get to three or four years old, and then stop worrying? Even I, with one three-year-old child, know parenthood doesn’t work that way. As soon as the fear of autism passes, another demon waits to take its place. I have a friend whose pleasant, engaging brother showed no signs of mental illness until his freshman year at a prestigious university, then plunged headlong into debilitating schizophrenia. I have an acquaintance whose son began at age nine to exhibit symptoms of depression and, despite every intervention and the unrelenting love of his family, took his own life as a teenager. There is no safety point. So why bother trying to relax?

Or conversely, why bother worrying?

Until you have to.

After fumbling for a minute or two, I told my hairdresser, “Oh, you’ll figure it out. You’ll be able to tell if anything’s not quite right. Don’t worry.”

Then I held my magazine aloft and simply insisted she agree that the outside of Will and Jada’s house was as horrendous as the inside.

That was a much easier point to sell.

Quote of the Last Six Days: What Isn’t Tried

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I got this quote off the giant flip-pad at my Weight Watchers meeting this afternoon, which attributed the words to “Anonymous.” The quip could’ve originated anywhere, I suppose. No matter. I decided it’s fair game for my Occasional Quotes series.

What isn’t tried won’t work.

Self-evident? Yes. Still, it encapsulates my philosophy these days.

I’m about to embark on a purge of destructive forces from our home. Environmental toxins. Molds. Electromagnetic fields (EMF’s). We live in a 150-year-old building tucked into a massive modern metropolis. Goodness only knows what my efforts will uncover.

I suspect that this is going to be a lot of work, and that in the end it might require even more lifestyle changes. We’ve already tossed the cordless telephones and microwave. The television, receiver, stereo, DVD player, and speakers are hooked to a single power unit so that the electricity to them can be easily cut. The wireless printer, which serves all four household laptops, is shut off anytime it’s not actively receiving data or spitting out paper. I’ve removed almost all plastic from the kitchen. (I’m on the hunt now for a food processor with a glass bowl. I’ll post the link if I find one.)

Perhaps next we’ll learn that the air-conditioner in Martin’s room is spewing EMF’s. Maybe the whole room is bad and we need to move him down the hall to the guest quarters. We have wireless internet, very helpful to me working at home. Will I have to run cables through my home office, and to Adrian’s desk, and to our bed where I usually end up writing this blog?

Staring down possibilities like these, it’s legitimate to ask whether any of this will aid Martin’s recovery. It’s equally legitimate for me to respond that I have no idea. Maybe it will help.

If I don’t try at all, definitely it will not help.

There are lines to be drawn, of course. I can’t keep Martin in the proverbial bubble. (I tried. He got out.) If I discover that Martin’s favorite train (Rosie) or his nighttime clutch blanket (John Paul) is tainted, I’m going to need to hear some pretty solid evidence before I rip the toy from his hands. I have to weigh what’s reasonable.

Before you ask—yes, my definition of “reasonable” has expanded, exponentially, since we started ASD recovery.

Truth be told, I’m hoping to discover that the only toxic items in our household are these horrible old Russian posters Adrian has hanging in the upstairs hallway. Lifestyle change or no, I’m willing to kick those puppies to the curb.