“Why Am I Autistic?”

It all started in the security area at LaGuardia Airport. Noah got ahead of me and went through the “arms up” security scanner. I followed, through the old-fashioned one. I came out and saw Noah with two airport staffers, a man and a woman. One was saying to the other that Noah had to go through again, because he didn’t have his arms up when he stood inside the machine.

I intervened, explaining that Noah is autistic and wouldn’t understand what to do. The male staffer told me that he would do a shoulders and legs pat down instead. I said that that was fine. Truth be told, Noah could have followed directions for the scanner if I had explained them to him, but I neither like nor trust those machines, so at least half the time, I choose a pat down.

When that was all over, I walked to the conveyor to get my bags. The guy manning it told me that I could just say something up front in the future and my son wouldn’t have to go through that scanner. “We’ll help you,” he said. “Thank you. I really appreciate that.”

And off we went to our gate. We made great time getting to the airport and through security, so had lots of time to kill. Len and Ariel went off to get breakfast, and I stayed back with Noah. He and I sat together, doing nothing special, when out of what seemed to me the clear blue sky, he turned to me and asked, “Why am I autistic?”

I’ve never been struck by lightning. Well, not until that moment, anyway. I cannot describe what it felt like to hear those words come out of my son’s mouth. In the past, if ever I had reason to tell someone that Noah was autistic, he would always assertively correct me. “I’m not autistic!” So this question washed over me like a giant wave, with sparks of lightning shot through it.

I was dumbstruck–by the fact that he asked–and by my rank inability to answer. I tried to find a way to use words to explain all that I didn’t know and couldn’t explain to a child whose core deficit is his inability to understand the meaning of words.

I threw together jumbles of what were probably to Noah completely incomprehensible syllables, including ones about brain wiring and uniqueness and seeing the world differently. Then I just stopped talking. And started crying.

As I transitioned from crying to sobbing, I tried to understand why. Why was I crying? For whom was I crying? Were these tears of joy for what might have been a breakthrough moment in Noah’s understanding of himself? Or were they tears of anguish for all I couldn’t explain to him, for the fact that he is autistic, and that I can’t change that? I still can’t say. Maybe it was a mix, the very thing that my experience of Noah has largely been, viz., a rollercoaster ride of highs and lows, of joy and sorrow, of happiness and pain.

I didn’t get very much time to process my emotions, my sense of inadequacy, of wonder, of shock. Because Noah followed that first question with one that just shattered me: “What should you do if you don’t want to be autistic?”

Anyone who knows me even casually knows that I talk. Often too much. But this question just rendered me mute. Thoughts pinged through my brain at the speed of light, as I tried to imagine what an answer might even sound like, which words I could cobble together. I never managed more than, “I don’t know, Noah. I don’t know.” And I cried and cried.

It’s funny, but in those moments of epic crying that I’ve experienced through the years, I’ve always had this out-of-body sense of observing myself and wondering, “How on earth do I even have that many tears to shed? Don’t they ever run out?”

 Mercifully—or so I thought—it was time to board our flight. And we boarded early. I’m over thinking that we shouldn’t use that privilege because Noah is twenty-two. That’s his chronological age, to be sure, but his functional age is much lower, and I’ll do whatever I can, wherever I can, to make any process easier for him and for us. I’m not taking anything from anyone else; I’m just giving my son a chance to manage something in relative calm. And boy do we need that.

When we got to our seats, I had to laugh. My husband, god bless him, had booked the emergency row. I joined the trip a little late, so my seat was a middle one a few rows back. Len took that seat, so I could sit between Noah and Ariel. But the more I thought about it, I realized how ridiculous this seating arrangement was. I pictured the flight attendant coming over and asking each of us to affirm that we were willing to help in case of any emergency. Noah, being a generally compliant person, would have said “yes.” But I wasn’t willing to compromise the safety of other passengers in case of an actual emergency.

So I walked back to my husband’s row and asked the woman on the aisle if she’d like an aisle seat in the emergency row. The window seat next to Len was empty, and Noah is all about window seats on airplanes, so that worked out.

What didn’t work out was that in moving seats, Noah somehow lost track of a puzzle book a nice airline employee at the gate had given him. This led to my nearly six-foot-tall son gesticulating wildly in the aisle near the bathroom and verbally perseverating.

I had packed Noah’s “emergency meds” and shouted (in my head at least) for Len to get some water from the flight attendant. After taking his pill, Noah calmed down a bit. But the crisis was really averted when Len finally found the errant puzzle book somewhere under the seat in front of Noah.

Sitting in my seat, feeling emotionally and physically exhausted, I watched two flight attendants talking. One had given my husband the water. She was telling her colleague to keep an eye on Noah, that he had been agitated. She nodded her head in my direction. I read her lips. “His mom is sitting over here. He’s a few rows back with his dad.”

Then she approached me. “Just let me know if there’s anything you need.” Me, in my head, “I need him not to be this way.”

Noah’s “aha” moment about being autistic might just have been a window opening a crack and then slamming shut. I don’t know if it’ll ever open again. But I do know that it’s possible to run out of tears. I had none left by the time we took off.

Nina Mogilnik’s professional career has encompassed work in the philanthropic, nonprofit and government sectors. Nina serves on the board of Birch Family Services, an organization dedicated to educating and supporting into adulthood individuals with a range of developmental disabilities. Nina is also an avocational writer, and has had a number of essays about her experiences dealing with her father’s Alzheimer’s and her son’s autism published in Haddasah Magazine and in The Jewish Week.  She was recently invited to blog for The Times of Israel and has been contributing her take on life and current events.  Nina’s proudest accomplishment — and hardest job by far — has been as a mother. Nina has degrees in philosophy from Union College (B.A.) and from the University of Chicago (M.Phil). She lives with her husband and kids (human and canine) in New York City.