I felt the world revolved around my first baby; everything about him was nothing short of a miracle. He was delightful, beautiful, exceptional — he still is — but I didn’t know he had autism.
Maybe it was my first brush with mother’s intuition — the fear that something could go wrong with my pregnancy. The heaviness of that feeling settled over me as soon as I confirmed I was expecting.
There was no shortage of things for a new mother to fear. Syndromes, diseases, disorders, miscarriage. But not autism. Never autism. I naively functioned under the notion that my child was immune, that there was some sort of invisible shield protecting our soon-to-be family of three from the rapidly spreading condition. Autism happened to other families, other children.
My fear dissipated as I settled into my pregnancy. The worries that plagued me, I came to understand, were largely out of my hands. So I learned to let them go and began to enjoy my pregnancy. Delivery was another story.
After Beckett was diagnosed I would reflect on his birth and wonder if I somehow caused his autism. The natural birth experience I had hoped for didn’t go as planned — Beckett was delivered via emergency C-section. Did the trauma of labor and delivery affect his development? Did I make the wrong decisions during the process? Beckett never received a drop of breast milk. Was I to blame for not nursing him?
But in the days and months and years following his birth, those questions remained at bay, hidden as I witnessed and participated in the miracle that was this beautiful baby boy. My Beckett.
The Autism Spectrum Is Wider than You Think
The second of 12 children I’d cared for babies starting at a young age. Changed literally hundreds of diapers before I even graduated from high school. Couple that with the at-home daycare my mom operated, and it’s safe to say I had a bit more experience with little ones than some of my mom peers. But I’d never seen a baby like Beckett.
He slept like a dream — eight uninterrupted hours by 8 weeks old. He laughed loud and often and smiled at the least provocation. People continually stopped me on the street to comment on how happy Beckett was. He rarely cried — even when I left him with a sitter. He went to bed with little or no fuss, quietly looked at books when he woke up and required little attention (though I certainly gave it to him). He was fat, happy, absolutely beautiful and content.
So content that I was able to take Beckett to work with me when he was only 7 months old where he sat on the floor by my desk and quietly played with toys. He napped in his stroller in an empty office, and during lunch we went for walks or spent time in the park. I recognized that his behavior was exceptional. I thought it was exceptional in a good way.
I didn’t know autism lurked in the corners of our happy little life. And though the signs of autism were virtually unrecognizable at the time, this beast of an illness was slowly and stealthily pulling my sweet boy into the dark. Even as we celebrated the light that was Beckett, parts of him were being swallowed by the shadow of autism. Occasionally it pricked my senses but not sharply enough to move me to action, to remove the blinders and look at my little boy with objective eyes.
The Early Signs of Autism
Yes, looking back I can see that the signs of autism were present in Beckett, even as an infant. But because I was enamored with my son and enjoying all that he was, I didn’t see the little boy that he wasn’t.
He wasn’t hitting some milestones, but that didn’t alarm me. All babies develop differently: It’s fine that he doesn’t have words. It’s OK that he doesn’t wave or point. His fierce independence and disinterest in peers signal how advanced he is — he’d rather sit and look at books. His fixation on the wheels of toy cars and trucks reveals thoughtfulness and deliberation. Toe walking is something even typical kids do. And that twisting thing he does with his hands — what else is a little one to do when he is excited?
Time passed, and I didn’t see that Beckett wasn’t keeping pace. So I moved ahead with pregnancies two and three, confident in my ability to care for three children under the age of 3.
It was after Beckett turned 2 that I felt the presence of that familiar companion — fear. I had moments of lucidity where I thought something might be wrong. Toe walking started to concern me, and excited hands seemed uncontrollable at times. He experienced night waking coupled with inexplicable fits of laughter, and there was still no consistent form of communication. If he was hungry he climbed into his high chair. If he was tired he stood and waited by his crib. If he wanted something he couldn’t reach, he grunted until his father or I picked the right toy.
The Diagnosis: Autism (and a terrified mommy)
At 2 ½ we had Beckett evaluated for speech. He qualified for therapy, but received no autism diagnosis. I saw his delays during that process and in the subsequent months as he received speech therapy at home.
Three months later he was reevaluated. I knew something more than speech was amiss, and I was prepared to hear that Beckett had delays. I knew this. I’d observed this. It was simply a matter of addressing those delays, providing him the services he needed and getting him caught up with his peers. He would be fine.
Two weeks after the evaluation we met with the psychologist from Beckett’s diagnostic team. I sat and listened while nursing my 6-week-old son (my 1-year-old was at home with a sitter). Everything she said made sense. It was what I expected — until I heard the word autism. “Wait. You mean that he actually has autism. He’s autistic?”
And as cliché as it sounds, the world really did stop in that moment as I tried furiously to wrap my head around the fact that I had three children under the age of 3. And my oldest, the one I thought was advanced, was actually autistic and functioning, in many respects, on the same level as a 9-month-old.
I rocked my baby and cried.
Part II: After receiving an unexpected diagnosis, find out how the family adjusted to life with a special needs child and what Ness wants every mother to know.