Coming Out

I remember the first time I “came out” to a stranger. I was at Target (as usual), and a woman said “hello” to Will and waited for him to respond. I said “hello” back for him, smiling and telling her, “Will isn’t being rude to you, ma’am. He has autism, so he doesn’t speak.” That night, I told my husband Marty about the exchange. I was incredibly proud of having publicly stated, to someone who didn’t need to know, that Will had autism. Doing so was a big step for me.

See, the thing about autism is that Will looks like everyone else (although, and I could be a teensy bit biased here, I do think he’s maybe a little cuter than the average kid). He “passes” for “normal” the way some of my gay friends used to “pass” for straight before coming out. People cannot look at Will and tell that he’s any different. And so I think it comes as even more of a surprise to people when I tell them he has autism.

At first, I didn’t want to tell people Will had autism because it was too painful. I would cry just thinking about autism, so I tried not to talk about it in front of Will. And I knew I didn’t have to tell people, given how Will blended in. So, in those first few months A.D. (that’s “After Diagnosis” in our house), I stuck to telling family and close friends. I even asked them to keep the news to themselves, not out of shame, but out of fear. I was petrified that a girlfriend would mention Will’s autism to another mom, and that I’d then run into that mom, say, at the park. I knew if I had a random acquaintance come up and give me her condolences (because that’s how it felt in the beginning; no one knew what to say except how sorry they were), I would completely break down on the spot.

Today, we’re living in the year 4 A.D., and I tell anyone and everyone about Will’s autism. I’m heard weekly on Marty’s local sports radio show, doing an autism public service announcement. I tell the cashier, the grocery bagger, the a/c repairman, and the hairdresser. I talk about autism.  I blog about autism. I read and share and post about autism. And, as a result, I’m asked about autism. One of the things I’m most often asked is how I knew and when. This is the part in the show where the screen gets fuzzy for a second for the flashback…

Will was a happy, engaging baby. He was funny and smiley and the absolute best thing that ever happened to me. People fawned over Will in stores, and he giggled when they made funny faces. In our playgroup, Will was among the first to babble, laugh, sit, stand, and crawl. He was my whole world, and then my world imploded.

When Will was 18 months old, we had just moved into a new house across town, and we found out I was expecting again. The house was constantly full of workers, fixing all those little things that go along with building a new house. I was exhausted and nauseous, and Will seemed quiet. I noticed that he hadn’t gained any new words recently, although he had previously had ten: dada, box, ball, bird, dog, duck, book, jack, hi, and bye. He never did say “mama.”

Determined to bring Will out of the shell he seemed to have developed, we threw ourselves into playgroups and playdates and even signed up at the local everything’s-padded-bounce-off-the-walls-kid-a-torium where we attempted tumbling time and morning music-fests.

But Will didn’t like the play center, and he would cry and cry when everyone around him started to sing and dance. He preferred to head to a back area and play alone with blocks. He would stack these huge blocks up and knock them down. Stack them up. Knock them down. And again. And again. For an hour.

Will started having tantrums in stores. Screaming bloody murder a split second after laughing, he would draw concerned looks from everyone in sight. His tantrums were full-body meltdowns complete with flailing limbs, tears, and a screeching cry that sent me running to the pediatrician time and time again, just sure that he must be moments away from a ruptured ear drum or that all of his molars were coming in at once. Something, surely, had to be wrong to make a child scream like that. It wasn’t just a tantrum. It wasn’t normal.

But the pediatrician simply checked Will over and said, “Welcome to the ‘Terrible Twos.’ Sometimes they start early. Next time, don’t give in when he throws a fit in the store, or he’ll do it every time you go someplace he doesn’t want to be.” And that was pretty much the advice I got when I took Will in to discuss his reluctance to eat new foods, concerned that, at 20 months, he was still eating jars of baby food when his playgroup buddies had abandoned it long ago. “Don’t worry so much,” the doctor told me. “He’s a picky eater. I’ve had plenty worse in my practice. It’s not like any of them go off to Kindergarten at five, still eating jar food. He’ll grow out of it.”

Last month, Will, 5, started Kindergarten, and yes, he still eats jars of baby food.

As I moved through my third month of pregnancy, I could see that Will still hadn’t gained any new words. I blamed the move and myself. This pregnancy exhaustion was keeping us too cooped up. He wasn’t with other kids enough. Surely this was just a little speed-bump in his developmental path. After all, he’d hit all of his baby milestones right on target.

I talked to my friend Nicole, whose son was a “late talker.” She remembered how concerned she was, until he basically started speaking one weekend right around his second birthday, as though the words had been stored up in his mind all along. She told me to relax, sure that Will would be the same way. She adored Will, and she knew him well. She was my “mommy mentor”: my source of all practical information and experience. So I breathed.

That was November of 2006. I went out to a spa night with the local mommy club, and while sitting next to a friend, enjoying a pedicure and gossip, an acquaintance of ours stopped by to chat. Her son had autism, she announced. But she was curing him. And I should not, under any circumstances, have any dental work done while I was still pregnant because old fillings have mercury and mercury is the most toxic element on the planet and now she was doing something called “chelation” and some kind of shots and a diet and something about gluten and there are so many of these children now and isn’t it so nice to have spa night, see you later.

When she walked away, my head was spinning. I looked at my friend beside me, and saw my face mirrored in her shell-shocked expression. In the car on the way home, I rubbed my pregnant belly and said to myself, “Thank God Will is healthy. Thank God Will doesn’t have autism.” The next month, that traumatized friend beside me received an autism diagnosis for her then-four-year-old son.

As is the case with most parents when their children are diagnosed with autism, my pedicure protagonist shared a lot of what she was learning with everyone else. She sent out an email one evening that was essentially a three-point checklist of red flags indicating autism before age 2. I read it. And then I read it again. And again. And then I realized I was holding my breath.

No. I told myself. No, Will’s just a late bloomer. He’s fine. I grasped to the straw of hope later in the article (it stated that some children showing only two of the three markers did not have autism, but later showed speech delays), molding it to what I wanted to hear: it’s just a speech delay. He’s fine. It’s just a speech delay.

I printed the article and took it to Marty, unconsciously rubbing my belly as I walked barefoot across the house. I remember my exact words as I showed him the checklist: “I’m not saying Will has autism, because that’s just ridiculous, but you know… maybe he has some kind of speech delay. What do you think?” We agreed to call the pediatrician for whatever kind of evaluation it was that Will needed, thinking we were probably headed for speech therapy. Maybe, we posited, that’s why Will seems so quiet lately. Maybe that’s why he gets so upset. He must be frustrated over not being able to communicate well. No wonder he’s having tantrums. Yes. Some speech therapy. He’ll be fine. He’ll be fine.

Our pediatrician was out of town for the holidays, and he was booked solid upon his return, so we set an appointment for a few weeks out rather than meet with one of his partners who wouldn’t know Will like our doctor did. A few weeks didn’t seem like a big deal.

On January 16^th 2007, a Tuesday, Marty and I left Will with my “mommy mentor,”  (and neighbor) Nicole, while we went for my 20-week ultrasound. I had this gut feeling that we were having a girl, but, in an oddly superstitious move for me, I refused to tell anyone my guess. Instead, I kept very uncharacteristically quiet on the topic, and I waited. I knew another boy would be a great joy. All I could ask for was a healthy, happy child.

A girl, though… a girl would be a little bit of a bonus. There hadn’t been a girl born into Marty’s family in over 20 years. The first thing my mother-in-law had said to me when we announced our pregnancy was, “Make it a girl!!” And my aunt, well, I was pretty sure she’d burn a hole in her MasterCard within a week if I were having a girl. So when the ultrasound technician announced that we should think pink, I was elated. I was kvelling. I was thrilled.

That was a Tuesday, and all was right with the world. The next Tuesday, our pediatrician said, “I think Will has an autism spectrum disorder,” and the world ceased to exist. The Tuesday after that, we were at the specialists’ office, cringing as a 7-year-old boy in the waiting room shrieked every 20 seconds while moving himself agilely from seat to seat, waiting and wondering how it was possibly right that we belonged in this hell.

But I’m jumping ahead, as I so often do when I’m avoiding something difficult. (Cue the rewind noise and fuzzy graphics as we back up to the day after my ultrasound.)

After the high of finding out we were expecting a girl had begun to wear off and my aunt had been set free to shop to her heart’s content (to this day I’m not sure which of the two of us was more excited about my having a girl), I began to focus again on the child before me, then just shy of 22 months old. Something changed in my perception of him that week, and I started to read. I read all week. I looked through every website and article and email. I opened my eyes to reality, and then I desperately wished I were blind.

I don’t remember telling Marty that Will had autism. I just know that I printed every developmental checklist I could find for 18- and 24-month-olds and then highlighted everything that Will wasn’t yet doing or was doing, depending on the highlighter’s color, as I began color-coding my research and furiously typing my notes. I printed the DSM (The Diagnostic and Statistical Manual of Mental Disorders) criteria for the autism spectrum disorders, all five of them, and color-code-highlighted them too, jotting notes in the margins and underlining key points. I had everything but footnote citations in this stack of research that had become my description of my son. Lastly, I typed up a list of all the “weird” things Will did – all those little idiosyncrasies that made him stand apart from his peers or that concerned us or that just seemed odd.

It was a long list.

The two days before Will’s big appointment were the worst. I cried. I cried a lot. I knew Will had autism, as did Marty, though he was more hopeful than I that the pediatrician would have a different answer. Will and I stayed home, and I cried. Nicole called, and I sobbed, “I can’t talk to you,” and hung up on my dear friend. Then, even in my mourning I felt guilty, so I called her back and said it wasn’t her but that I just couldn’t talk to her that day. She understood, she said. And then she called Marty, sure that something was seriously wrong. He had talked to me a half hour earlier, he told her, and was already on his way home. Neither of us shared anything more than that.

But even having Marty home in the middle of the day could not calm my fears. I was panicked. And grieving. And hormonal. And scared. I didn’t know it was possible to cry that much.

The morning of our appointment dragged on. And finally, we were there in the exam room, waiting for what felt like Judgment Day. I sat waiting, puzzling at how different this Tuesday was from the last. Our pediatrician walked in, the very one who had told me repeatedly that I was, in essence, a nervous first-time mother who needed to relax and stop worrying so much. He watched Marty play with Will while I rattled off my concerns, showing him my many checklists and notes. He asked me some questions, I think. But I don’t remember now. I wouldn’t remember ten minutes later. It wasn’t important.

What I do remember is that at some point, Marty sat down so that he, the doctor, and I were seated in a loose triangle with Will on my lap, facing Marty. I looked to our doctor and asked what he thought. “I think you’re right,” he said. “I think Will has an autism spectrum disorder.” At that moment, sitting with Will’s back pressed to my chest as I held my arms tightly around him, my whole world shifted. I was there, but I wasn’t there. I was listening to the doctor, but I heard nothing he said. I was holding Will, but he was gone.

For me, that moment of confirmation, of diagnosis, was a paralyzing, suffocating thing. I clung to Will as I desperately tried to breathe, finding that the doctor’s words had eviscerated my chest like cannon fodder, leaving a sucking wound behind where my lungs used to be. I don’t recall what the doctor said at that moment. I don’t know if he said anything at all. My every sense was heightened, every nerve tight, and yet I took in nothing. I was under a bell jar with Will, and every other being in the world was on the other side of the glass. All I could see was Will’s hair through my tears as I tightened my arms around him, pulling his back to my chest, trying futilely to shield him from himself.

Eventually, and I really don’t know how long it took, I started to breathe again. When I asked the doctor the natural question, “What now?” he wrote referrals for speech and occupational therapy, and then sent us on our way, saying, “You know, these children often grow to be a great joy to their families.” I wanted to smack him.

Then came the phone calls and emails to friends and family, more crying, more research, and another Tuesday appointment. We found ourselves in the specialist’s office, despite our pediatrician’s recommendation that we focus solely on therapy. I brought my checklists and research once again, and my list of Will-isms. And this time, I brought a new list: our questions.

Top on my list, of course, was “why?” What had I done wrong? How did this happen? I knew that Will’s autism wasn’t my fault in the 1950s “autism-is-caused-by-cold-and-distant-mothers” sense of the word. But I carried this child. I gave birth to him. I had to know if I caused this somehow. Marty asked the same question. Had he done something? Was this his fault? The doctor looked at Marty, allaying his concerns with a single sentence: “Mr. Cohen, you’re a single-cell donor in all of this. Nothing you did caused it.” So when he turned to me, I was hoping for some reassurance as well. “Mrs. Cohen,” he said, his brow furrowing, “how many metal fillings do you have?” I didn’t know, so he came around his desk and had me say “ahhh” while he counted. “Hmmm. And did you eat fish during your pregnancy? How much? How often?”

Oh. My. God. This is my fault. This is my fault.

“And is Will fully vaccinated?” he asked me next, although his expression showed that he clearly already knew the answer. I saw in my mind the little chart I’d signed at our pediatrician’s office for each and every shot. He scribbled notes before looking back at me. “Are you fully vaccinated?” More notes. “Did you nurse him? Because mercury from the mother can be passed along in the milk.”

Had I poisoned my son with vaccines? Had my dental fillings made my womb a toxic cesspool? What about my daughter, swimming in there right that second? Was my breastmilk, which I’d been told again and again was the very best thing possible for my baby, actually toxic?

I was right, I told myself. This was completely my fault. Intent was irrelevant. He was my responsibility, and clearly, something I had done had destroyed his chances at a normal life. And now I’d probably done the same thing to my daughter. Oh, God. Oh, God. OhGodOhGodOhGod. I cried the whole way home, and I thought about the lady from my spa night. Suddenly, she didn’t seem so far off base. A lot of her words came back to me, and I realized that, within two months of that spa night, both my pedicure pal and I had gone from thinking this woman was kind of a nut to realizing that we had a lot to learn from her.

In the months that followed, I rarely told this story without crying. Even now, almost four years later, there are times when I just cry and cry. But I remember the autism mom who I’d thought of as the nutty lady at the spa, and how she “came out” to my friend and me about her son’s autism. Her openness and acceptance afforded me an opportunity to be educated. And, having spoken with her that night, she thought of me when she sent out that checklist email. Had she not, it may have been another few months before it even occurred to me that Will’s “speech delay” was the least of our challenges.

These days, I am the nut. I’m the lady at the store with two kids carrying iPods and one munching on bags of gluten-free snacks and occasionally making odd noises for no apparent reason. And so when people make comments or ask questions, I come out with it: Autism. I explain and speak and share. I do so in the hopes that I can do my part to educate the public and make this world a little more understanding as Will walks out into it. I do not hide it or shy away from it. Will may not speak, but he hears and understands everything. And so I do this for him. I show him I’m proud of him. I show no shame. I stand up. I step out. And I say it loud: Will has autism.