Category Archives: Life in Society

Holy Cow, What a Week

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This has been a week of outrageous swings: new development upon new development, meltdown upon meltdown.

Let me start with the good. Let me start with the incredible, because I am bursting with pride. Here, blog world, are the headlines—

Martin has managed new feats of attention. Sunday I asked Martin to put on his shoes. Martin walked to the front hall and put on his shoes, albeit on the wrong feet. That was an achievement in itself; seldom does Martin obey a command without additional prompting, especially not a command that requires multiple steps to fulfill. (Walk to front hall. Find shoes. Sit down. Put on first shoe. Velcro first shoe. Put on second shoe. Velcro second shoe. Usually I ask two or three times, and finally bark, “Martin! Shoes! Feet! Now!”) After the initial success Sunday, I said, “Oh, Martin, I think those shoes are on the wrong feet. Why don’t you switch them?”, and he did it without being asked twice. He looked at his feet, removed the shoes one at a time, reversed them, and Velcroed them closed again. He didn’t seem to notice that tears of happiness appeared in my eyes.

Martin is showing off. Tuesday on this blog I described how Martin jumped in circles on a trampoline at the doctor’s office and announced, “I’m jumping in circles.” It was a generalized observation, kind of informing the universe what was happening. Compare what happened the next day, Wednesday, at a Manhattan playground: After three tries, Martin managed to ascend a green spinning corkscrew and hoist himself onto a V-shaped joint at its top. Then, balancing himself, he checked to see if he had my attention and said, “Look how high I am!” That was no generalized news bulletin. That was a desire to show off to his mommy. He was proud of himself for climbing the corkscrew, and I was proud of him for wanting me to know it.

Martin is moving, at least sometimes. We live in a fourth-floor walk-up apartment. Because the apartments below us have high ceilings, it’s more like climbing five flights. There are 78 steps total. I know because I used to count them when I was eight- and nine-months pregnant. I thought getting up the stairs was tough in those days. It was nothing compared to the challenge of getting Martin up them. He dawdles. He fiddles with his bicycle, stored in the ground-floor foyer. (We have the kind of cool neighbors who allow that.) Especially when he’s lethargic, he sits down on the landings and talks to himself instead of continuing. If I take his hand and try to march him upwards, he bends his legs slack and suspends his body from my hand. The stair process can last ten, fifteen minutes. So imagine my surprise Wednesday evening when, as we entered the building, Martin said, “I want to hold your hand,” then took my hand in his and, next to me, ascended all 78 steps without interruption—a historic achievement in Martindom.

Martin wants what other kids have. Yesterday morning, Friday, I brought Martin to an Anat Baniel Method therapy appointment. As we were leaving, we encountered another boy, about Martin’s age, and his father. The boy made excellent eye contact and had far more verbal skills than Martin. He introduced himself by name. Then, obviously proud, he held up an MTA MetroCard and said, “My dad gave me this to hold, and it still has some money left on it.” Martin, who watched and heard this from a few feet away, immediately said, “I want to hold a card. I want to hold a card!” Unfortunately, I had just loaded $50.00 onto my MetroCard and therefore did not want to trust it in Martin’s hands. I said, “Let’s go back to the subway station and see if we can get you one.” I hoped that, in the ten-minute walk to the station, he might forget the incident. Instead, when I pulled out the MetroCard to enter the station, he demanded to hold it, which I allowed for a short time. Martin has taken an interest in other kids’ food before, but to my recollection he has not sought their playthings or special privileges, at least not so earnestly.

Martin is indicating the person to whom he’s speaking. This began when he started using the command form; to his dictates, he appended Mommy. “Come here, Mommy.” “Open the candy bar, Mommy!” (Martin doesn’t really eat candy bars, of course. We call Go Raw brand raw sprouted seed bars “candy bars” to make them sound as delicious as possible.) Within a few days, as we were driving in the car, Daddy became subject to our little dictator, too. “Close the roof, Daddy.” “Turn on the radio, Daddy.” Not too much later, we realized that even non-command comments were directed toward me or Adrian. “Mommy, I want something to eat.” “Daddy, I need some help.” Martin was no longer throwing words to the wind. He was giving them to his parents. Finally, just yesterday afternoon, I heard him specifically address someone other than me or Adrian. “No, Samara,” he responded to a question from his babysitter. Martin begins to understand that a conversation requires a partner.

Martin doesn’t always need the sound. Last night Samara was giving Martin a bath while I packed for our Thanksgiving trip to Texas. (I’m typing this entry on the airplane, while Martin watches Sesame Street on the iPad. We’ll be in Texas for a week.) From the bedroom, about ten feet away, I caught Martin’s eye. I put my hands over my heart and silently mouthed the words, “I love you.” Martin apparently read my lips. From the bathroom he called, “I love you, Mommy.” Can you imagine? A boy who once lacked appreciable receptive language read my lips.

So we had a week of singular advancements. Let me not, however, overstate where we are. As always, there’s more to the story.

•      On Sunday while Martin switched the shoes from foot to foot, although he maintained focus on the task, he also perseverated nonsense to no one while he worked. “I’m reading it on the computer. ¡Hola! The elephant’s name is Mitt. I’m not going to take a shower!”

•      The day Martin climbed the corkscrew, there were some four dozen kids scampering around the playground, chasing each other and playing games. Martin declined to interact with any of them. The activities to which he set his mind were his, and his alone.

•      After Martin seamlessly ascended 78 steps while holding my hand, he entered the apartment, removed his shoes and coat, and immediately began self-stimming, running back and forth with two pa-dap-BUMPs capping each lap.

•      While the boy with the MetroCard introduced himself, Martin turned around and thrust his face into a waiting-room sofa, with his butt in the air towards me, the boy, and the boy’s father. When I fished him from the sofa and asked him to say hello, Martin responded by muttering, “No, no!” and hiding behind my legs. It was from that position that he watched the other boy show off his metro card.

Moreover, Martin’s mood has been disastrous. Perhaps because of the itchy viral rash plaguing him, or perhaps because our travel has thrown off his sleep, or perhaps just as a counterpart to the rate of change in his neuro-processing, Martin has turned on the tears at any provocation this week, and sometimes at no provocation.

One sunny morning he said, “It’s cloudy outside.” When I said, “Look out the window, Martin. I think it’s sunny today,” Martin started crying and yelled repeatedly, “No, it’s cloudy outside. It’s cloudy outside.” For several minutes he was inconsolable. Another morning, following a poor night’s sleep, Martin whined continuously for 30 minutes. Oh mommy oh mommy oh mommy oh mommy oh mommy oh mommy on and on. And on and on. And on and on. His poor night’s sleep meant I was running on about three hours’ sleep that morning. The oh mommys did nothing good for my nerves.

This afternoon Adrian suggested that Martin consider wearing his green fleece coat to Texas instead of his bulky winter jacket. Martin responded by screaming from our apartment, screaming down 78 steps, screaming through the foyer and parking lot, and screaming halfway to JFK. I occupied the passenger seat and rubbed the back of Adrian’s neck as he drove. We pretended that no one was screaming in the back seat.

When the noise finally stopped, I said to Adrian, “It’s amazing, isn’t it, all the new things he’s managed this week?”

Pinpointing

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When people ask me what treatment “helps Martin most,” I shrug and say, “Dunno. Some combination of what we’re doing, I guess.”

We’ve dragged ourselves through a rough couple months lately. Symptomatic, crabby, stagnated months. Regression. Over the last eight days Martin has improved, and I am praying the road is becoming firm again.

I ask myself, and others have asked me, what provoked this latest months-long slog. My first thought is, “Dunno,” followed by, “Viruses seem to be an issue. Also chronic internal inflammation. Unavoidable radio waves. Adrenal stress. Something environmental? The construction happening directly north, east, and south of our apartment right now? Our own bathroom renovations? Parasites, maybe. Or electromagnetic fields. Or an issue at school,” followed by, “Oh, hell. I dunno.”

Nevertheless, I have two recent incidents that either (1) put the lie to unmitigated “I dunnos,” or (2) demonstrate that I retain an active imagination.

Incident One: Evil Metal Detector?

Two weeks ago we traveled to Chicago for doctor appointments. Over the course of the three-day trip Martin’s symptoms ameliorated, somewhat, and by the time we arrived at O’Hare for an evening flight home, he was able to hold my hand and wait in the security line—without dancing, skipping, wresting his little wrist from my grip, wandering away, or staging a meltdown. He was doing well.

When we arrived at the front of the line, I asked the TSA agent on duty whether I could request that my son be hand-searched, or at least scanned with a security wand, instead of walking through the metal detector. He has a neurological condition, I explained, and I prefer not to expose him to the magnetic field.

The agent seemed bemused by my request but responded helpfully. Because they aren’t allowed to touch children under age 12, she said, my request would require calling a supervisor from another part of the airport. Fifteen or 20 minutes might elapse before he arrived. Should she summon him?

I hesitated. We had half an hour until boarding time, but who knows what “15 or 20 minutes” really means, and I still had to clear security myself (Martin’s drops and pills being hand-searched while I argue/bargain with agents, flashing prescriptions for special foods and liquids in larger-than-three-ounce containers), then move Martin a quarter-mile to the gate.

“It’s okay,” I said. “He can pass the metal detector.”

But it was not okay. Immediately after walking though the metal detector, Martin became unmanageable. He refused to sit while I completed the security check, ran away from the security area despite admonishments, and whined nonstop. When we tried walking to the gate, he could not hold my hand or focus enough to progress more than 20 feet without crying. The flight was delayed (and why would it not be, at a moment like that?), so I took Martin to the Admirals’ Club family lounge, where he spent 90 minutes alternately running circles around the room and collapsing on the floor. After half an hour I retreated into my own world, drinking wine and texting friends for support. Quality parenting, I know. I should mention that the family lounge has glass walls, so dozens of business travelers in the next room witnessed our mother-and-son performance, albeit without sound.

Why did Martin’s behavior change so radically when he passed through the metal detector? Did the magnetic field affect him, or was the decline coincidental, triggered instead to the onset of travel exhaustion or some other factor? The Health Physics Society’s webpage on security-screening safety concludes, “[B]ecause of its nonionizing properties, the magnetic field generated in a metal detector will not cause harm to persons even with routine and/or repeated scanning.” A post on the BabyCenter website states, “Anything that generates or uses electricity, such as power lines or household appliances, produces an electromagnetic field. At the low levels a metal detector emits, this exposure is considered safe for everyone, including pregnant women.”

I will never know for sure whether the metal detector provoked Martin’s symptoms that evening. But something happened around the time he passed through. That much I witnessed.

Incident Two: Precarious Home Library?

Some weeks ago a nice fellow from Healthy Dwellings came over and completed a “healthy home evaluation” for our apartment. He spent several hours taking meter readings, testing water, checking air quality, and so forth. The resulting report showed that we’re doing pretty well, in most aspects.

One exception was radio frequency (RF), those electromagnetic waves that send data wirelessly. Ideally, RF levels should hover below 10 mW/m2. The lowest reading in our home—in Martin’s bedroom, thank goodness for small favors—was 137 mW/m2. In our living room, the level was 540 mW/m2, and in the library, the level topped out at a whopping 3,600 mW/m2. Our home library is an alcove set within the rafters (we live on the top floor) with a large skylight absorbing all that New York City has to offer (windows are the most common entry point for external RF waves). Our home library, because it is farthest away from any other apartment, is also where we keep Martin’s drum set.

As averred, Martin’s behavior improved last week. One particularly unsymptomatic afternoon Samara (babysitter) picked Martin up from school and brought him home, where I was cooking. When they arrived I completed several HANDLE exercises with Martin, watched him play with Thomas trains, and discussed with Samara how calm Martin appeared, steady on his feet and content to play alone. Samara agreed.

Martin then declared his intent to play drums and headed upstairs to the library alcove. Samara followed him. I returned to the kitchen. By virtue of an open floor plan, the library is visible from our kitchen. That helps me keep an eye on Martin and, in this instance, let me observe that, within five minutes of his going upstairs, Martin transformed into a different kid: running back and forth, flailing his limbs, unfocused. I called for Martin and Samara to come back downstairs.

It was another metal-detector moment. What caused Martin’s behavior to change from “with it” to “restless and in his own world”? Part of me wants to blame the library and its RF hurricane—because RF levels, at least to some degree, are fixable. Part of me thinks that I’m blaming the RF levels because I just discovered they are high in the library, and I’m prone to grabbing hold of any factor I can blame when Martin tanks. All of me admits, “I dunno.”

Pinpointing

These incidents raise a few possibilities.

First, I may actually have pinpointed some factors that affect Martin more than others. Brain-scrambling magnetic fields and RF waves!

Second, I may have seen connections that, in reality, don’t exist, and I may therefore explore yet more dead-end routes, like refusing to let Martin through metal detectors or blocking RF waves.

Third, the truth lies in some combination.

Doesn’t it always?

Supermarket Superwalking

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Last week Martin and I stopped by a Whole Foods Market. Our shopping list had only a few items. I expected a short visit.

On the way into the store I asked Martin whether he’d rather ride in the cart or walk. I offer this alternative every time we enter a supermarket, and invariably Martin replies that he prefers to ride. He is not inclined to exert himself for activities that lack excitement or flair.

Except, apparently, for yesterday, when he replied: “I want to walk.”

“You do? You’re sure? You want to walk?” I said. Martin’s wanting to try something new is always cause for celebration, but I was not without trepidation. Martin dawdles. He wanders. He begs to be picked up when I’m trying to get groceries in the cart. He surreptitiously grabs colorful packages off shelves, and I find the packages still clutched in his little fist two aisles later, or after we’ve left the store.

“Yes.” Martin stayed firm. He wanted to walk.

Every day a new adventure.

I pushed the cart to the beverage cooler. Martin strolled beside me, even set his right hand on the cart. I selected kombucha and coconut water. Martin remarked, “That’s kombucha,” as I loaded the bottles.

I pushed the cart to the cheese counter. Martin followed, no more than a few feet behind me. I selected brie and Roquefort. (Adrian eats cheese.) Martin looked over the selections and said, “I want something to eat.”

The request seemed reasonable. We were, after all, surrounded by food. So I headed to the olive bar for a small container of pitted olives, showed them to Martin, and said he could eat them in the café area after we finished shopping. He clapped his hands.

From there we perused the options for a birthday cake, selected crackers for Adrian’s cheeses, and checked the Whole Body section for organic socks. Martin stayed within five feet of me and didn’t try any shenanigans. We even faced an extraordinary test: When I couldn’t find the bakery counter (it wasn’t my usual Whole Foods), I asked an employee, who said, “Follow me,” and headed off. I was worried that I would not be able to follow him while also keeping Martin with me, because pushing the grocery cart meant I couldn’t hold Martin’s hand. Martin, however, was up for the test. He trotted right behind me, even picked up his pace to match mine.

Even if it was only a short visit to the supermarket, Martin walked, and that’s another first. After check-out we sat together in the café area.

I said, “That was really good, Martin, the way you stayed so close to me while we were shopping.”

Martin giggled and popped an olive in his mouth. That was all the response he gave, but I think he got my drift. I think he was with me.

Martin exploring some bouncy-house territory.

Martin taking a climb. That´s the type of big boy he is.

Developmental Delays

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Martin and I are in Texas, visiting my parents. Previous visits here brought Martin unmitigated happiness, as he basked in Grandma and Grandpa’s attention and enjoyed school-free all-day playtime. This trip has been different. Almost as soon as we arrived he became moody and crabby—and asked to go home.

After a few days I realized that Martin has matured, socially. He misses his little friends and interacting with other kids.

I decided to take him to a toddler playgroup sponsored by the church I attend when in Texas.

I didn’t know any of the families attending, so I faced the usual question: What explanation do I give?

I’ve admitted already that I hide Martin’s autism, constantly. My blog is anonymous, and Adrian and I choose not to share Martin’s condition.

The playgroup presented more challenge than usual. We were there specifically to spend time with other toddlers, all of whom were neurotypical (at least as far as I could tell). We were strangers asking to be welcomed. And the differences were bound to show.

What to do, what to do?

Martin, who is about to turn four, was the oldest child there. The next-oldest was a boy almost three, the son of the playgroup’s coordinator. After some brief introductions, I approached that boy’s mother and said:

“Thanks so much for having us. My son has some speech and language delays, so socially, I guess, he is probably right about where your son is.”

That was it.

No hiding, no blaming Martin’s quirks on tiredness, or on speaking Spanish better than English, or on being shy. And no reference to the A-word. I said he has “some speech and language delays” and left it at that.

We spent 90 minutes at the playgroup, and Martin did nothing to indicate that his issues went beyond “some speech and language delays.” He was recalcitrant, to be sure, but neither oblivious to the other kids nor obviously ASD symptomatic. He made eye contact, tried a variety of activities, and spoke to the adults. No tantrums erupted. When I had to leave to visit the restroom, I asked Martin whether he needed to join me. He considered, then responded, “No. I want to stay here.”

Martin’s conduct at the playgroup, along with my choice of introductions, got me pondering a conversation I had weeks ago with his Track Two doctor. The topic was whether the A-word still applies to Martin. Autism, as I understand the condition, is defined by symptoms, not by causes. If a person displays enough of the symptoms, to enough of an extent, then s/he is classified as on the spectrum.

If Martin no longer displays many symptoms, and the ones still present (like repeating words and questions) are infrequent, does he still have autism? Was my statement—“some speech and language delays”—accurate, even if we are still battling the underlying causes of autism?

I don’t know the answer, of course.

But I’m over the moon just to be asking the question.

Hi!

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Not a very happy post yesterday, “Bad Day. My Bad.” Sorry about that. Indulge me to add that it’s Sunday again, and today has not been much better than what I described in that post, although I’m pleased to report that at least I managed the behaviors more skillfully. I’m noticing a weekend pattern—bad night Friday, drowsy yet agreeable Saturday, killer Sunday—that may be linked to a new therapy we’re doing.

More on that later. This evening, let’s celebrate.

Wednesday this week I strolled a sidewalk with Martin and his friend, en route to a neighborhood playground. Martin’s friend, despite some behavioral issues, is verbally much more advanced than Martin. He and I were engaged in conversation, which momentarily diverted my attention from Martin.

How did Martin use the freedom? He approached a girl stopped on a bicycle and called out “Hi!”

Let’s break that down. Martin observed his surroundings, was aware enough to spot a child, decided to engage that child, and spoke in a clear and appropriate manner. He even paused a bit and waited for a response.

Another first, this whole activity package. Only this one time have I seen Martin, unprompted, initiate such interaction with a stranger.

Perhaps he won’t do so again for months to come.

But he will do so again sometime. And then again. And again and again. And then another novelty will become commonplace, and we’ll be one step closer to typicality.

And the girl stopped on the bicycle? Alas, she did not provide the response Martin had sought. She was older, perhaps seven. She turned up her nose and pedaled away, ignoring Martin’s overture.

I suppose we can’t expect the whole world to join us on our recovery journey.

Sorry for the poor picture quality; I couldn’t resist this mobile-phone photo of Martin “helping” his grandmother with the gardening.

Slow-Motion Childhood

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Autism is not a “blessing.” My son’s illness did not “happen for a reason.” I just don’t see the world that way.

But I do have the wherewithal to extract the positives where I can find them.

I could not have written that last post if I weren’t paying attention. Paying attention to everything, that is. Noticing Martin’s ups. Trying not to dwell on his downs. Celebrating imitation and inference-drawing as if he’d graduated Harvard.

Recovering from autism is like navigating childhood in slow motion. Martin achieves only gradually skills that neurotypical kids acquire in a flash and as a matter of course. My only child is on the spectrum, so I don’t know this for sure, but—I suspect that parents of neurotypicals may overlook tiny changes when they occur. They probably don’t keep calendars to mark when their children first pucker and blow bubbles.

Adrian and I see every momentum shift.

And years from now, when Martin is a surly teenager who rejects us in favor of his friends, we’ll be able to celebrate the event as our own special victory.

How many parents can say that?

Eating Bon-Bons and Watching Oprah

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I am at a conference, the annual meeting of a church governing body I serve as a volunteer. At lunch I sat next to a minister I’d never met, the pastor of a Brooklyn church. We engaged in the idle chatter of New Yorkers. Is Brooklyn part of Long Island? Will the new Barclays Center arena be large enough for the Islanders to consider playing hockey there? Do Upstaters despise City arrogance?

Soon the pastor asked, “So, what do you do?”

“I’m a full-time mom.”

“How many kids do you have?”

“Just one. He’s three years old.”

“Just one? Time for more kids!”

You can guess how I wished to reply. Something along these lines:

“Actually, my son has autism, and we’re trying to recover him, which means that I need to plan and execute eight million RDI and HANDLE exercises, and he can’t eat food with preservatives, or pesticides, or sugar, or starch, or soy, or gluten, or casein, or pretty much anything, so I need six or seven hours a day just to plan, shop for, and cook his meals, and then there’s juggling doctor appointments and administering supplements and making sure we never run out of those supplements, which barely leaves time for finding a special-needs kindergarten, researching new treatments, converting a modern home to organic and chemical-free, and snuggling my son. Usually I do all that on six hours’ sleep, or less. Also, I have a husband, and I like him, and occasionally I want to spend time with him. So, no. No time for more kids.”

Instead, I replied, “We’re pretty happy with just one. He keeps me busy.”

I felt (imagined?) the pastor’s disapproval with that response. I’ve felt it before, from others who don’t know about Martin’s condition or the journey we’re taking. And I understand. They must wonder: With one child who spends six hours a day in school, what do I do with myself?

I shudder to wonder what the disapprovers would think if they knew, in addition, that I have babysitters to help several afternoons per week.

I joke with Adrian about my schedule, about how I spend my day. When he calls from his office, he usually asks, “What are you doing?”

To which I invariably reply, “I’m eating bon-bons and watching Oprah. Why? What are you doing?”

I think I might have got the bon-bons-and-Oprah shtick from Peggy Bundy on Married . . . with Children. (Peggy probably meant it, though.) Now it’s become my and Adrian’s routine to recognize that I’m much busier than I ever was even as a full-time lawyer.

I suppose I could have employed that routine on the pastor at lunch: “I don’t have time for more kids, because I spend it eating bon-bons and watching Oprah.”

Then again, he might have been suspicious. A few weeks ago, Adrian’s secretary asked me, “You know the Oprah show went off the air, right?”

I’d had no idea about that. Is that true?

In any event, since Adrian’s secretary broke the news, I’ve been eating bon-bons and watching a lot of Ellen.”

Failure to Grieve

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This week I attended an excellent presentation by Sarah Birnbaum of New York Special Needs Support. The topic was navigating the “Turning Five” process, i.e., getting a child into New York City special education for kindergarten.

It was a tough evening for me, emotionally.

There was a time when I thought that Martin might be ready to join a mainstream classroom as early as kindergarten. (Martin is not yet four years old; he is scheduled to begin kindergarten in autumn 2013.) Although we have made much progress, particularly in healing Martin’s gut and easing atypical movement and behavior, we still have a long way to go in language development and attention. We won’t try to place Martin in any classroom more advanced than his current skill level; because we are committed to lifetime success, we’d rather coddle him for an extra year or two than see him flounder because we shot too high.

So we’re looking at special-education primary schools. And so I related when Sarah said something like (I’m paraphrasing), “You may find it upsetting to visit these schools and fill out applications, because it’s not something you ever envisioned yourself doing, not a place you ever expected your child to be.”

But did I relate in the same way that the other assembled parents did?

I think Sarah meant that it can be hard to accept that your child is not suited for a mainstream classroom. And she is right—perhaps particularly so in the context of parents who do things like attend presentations on kindergarten admissions sixteen months before their children are due to start kindergarten. No one really wants to admit that his or her child has special needs, right?

Therein lies my thought for the day. I’ve read, in multiple sources, that the parent of a child with autism should grieve, i.e., should mourn the loss of the child who was expected, in order to better accept the child who is.

Adrian and I expected a high-achieving child, no doubt about it. From his earliest days, Martin was photographed wearing onesies and caps with the logos of our alma maters. We as parents debated topics like whether to speak to Martin in two languages or three, at what age he should begin music lessons, and whether the risk of concussions meant he should not play hockey. If we had a great fear, it was whether a spot would be available for him at the mainstream private school of our choice.

It’s been two years since we first began to notice signs of autism, and more than eighteen months since the diagnosis. Yet I have not allowed myself to mourn the loss of the child we expected, because I do not believe we’ve lost him. Martin is recovering, however slowly. I refuse to accept that he will face limitations based on autism. I admit that Martin has special needs now, but I do not admit that he’ll have them for long.

I do not grieve.

Nonetheless, as I sat in a presentation on finding the best alternative classroom, I found myself hiding the fact that I wanted to cry, and I wondered:

Can this hope actually make things harder?

My little superstar getting some exercise.

Hiding It

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Kenji Yoshino, a law professor, wrote a book called Covering. To “cover,” according to Yoshino, is “to downplay a disfavored trait so as to blend into the mainstream,” and the pressure to cover is universal, because everyone possesses some attributes that society stigmatizes. Subtle coercion to cover, the author argues, imperils even our civil rights, because society penalizes those who refuse to cover, who refuse to mask their otherness for the sake of fitting in.

I’ve been thinking a lot about Yoshino’s thesis, because I exert a lot of energy in “covering.” I hide the fact that I am an autism mom, and when it comes to Martin, I conceal his ASD—the condition that, arguably, influences his life more than any other right now.

As I’ve explained on this blog, Adrian and I have chosen not to be public about Martin’s having autism. Our closest friends and relatives know, as do our immediate neighbors, and Martin’s doctors and caregivers. Beyond that, we’re tight-lipped.

We withhold the information from more casual acquaintances—people who don’t know Martin well but will probably remain in our future social circle—because we believe that Martin will not always have autism. We don’t want anyone’s dealings with the recovered Martin to be prejudiced by his having once had autism. Indeed, we don’t want anyone’s current dealings with Martin to be prejudiced by his currently having autism.

We withhold the information from strangers so as not to suffer their pity. I don’t want Martin subjected to preconceived notions of autism, not even for a moment. And no matter how much I might want special treatment at in a given situation (waiting in a long line, for example, or chasing Martin down in a clothing store), I refuse to allow anyone to think we need special treatment.

So, yes, I cover. I pretend that Martin is tired, or shy, or unfamiliar with the topic at hand, or better at speaking Spanish than English, or better at speaking English than Spanish. (In later posts I’ll explain more about my techniques for concealing autism. I don’t want to make this post too long.) If pressed for an explanation, I use a euphemism. A TSA agent asked me why she needed to hand-search the dozens of pill and liquid bottles I refused to run through the X-ray machine; I said my son has a “neurological disorder” and that X-ray can change the composition of his medications. An acquaintance inquired why we hadn’t tried to place Martin in a private preschool in our neighborhood; I responded that Martin has “some minor attention issues” that we want to “take care of” before kindergarten.

Are we wrong to keep Martin’s diagnosis a secret? Possibly. Through our actions we may contribute to the isolation persons on the spectrum; if we’re hiding something, does that suggest we believe it’s something that should be hidden? We might also be failing to set an example. If we really believe in biomedical recovery from autism—we do—shouldn’t well tell the world to watch our son and bear witness to his progress?

It comes down to parenting. If I were making the choice for myself, maybe I would sacrifice my own privacy, and risk prejudice, in order to set the example. Many “Aspies” are very public about their way of being in order to combat discrimination (and have created at least one organization dedicated to opposing autism recovery). Our son is too young to make that choice, and as his parents we have to err on the side of protecting our own.

So that’s that. For Martin’s sake I am willing, in at least one thesis, to tear at the fabric of our civil rights.

Once upon a time, I was a teaching assistant for constitutional law. What would my professor think today?