Letting Go of "Never" When Raising an Autistic Child

One of the biggest mistakes a medical or psychological professional can make about a patient, especially a child, is saying, “He/she will never….” And with autism spectrum disorders, particularly, all bets are off.

When my now 35-year-old profoundly autistic son was first diagnosed, in 1992, the doctor, a kindly, knowledgeable middle-aged man, was hesitant, which was in his favor. He did not want to have to drop any bombs on me—and maybe he didn’t know for sure. I appreciated his humble approach.

Still, he told me quietly that Nat, then three, would probably never go to college, have a girlfriend or get married.

The news was a kick in the gut. This was not something that a young mother wants to hear about her first child. But because it was 1992 and autism was still thought to be exceedingly rare, this was the general perception.

To be fair, a lot can change in any field in 32 years. But one thing that hasn’t changed is that autism often comes with social, communicative, behavioral, sensory, and even cognitive issues, which would make a love relationship exceedingly difficult.

But Nat was such a loving little boy, the gentlest soul I’d ever met. I can see him so clearly—he was like a sweet little scoop of ice cream, with his glossy round blond head, his soft overalls. He loved to stand quietly in a stream of sunlight, left thumb in mouth, right hand dangling a string of yarn, and watching intently the wiggly wave it made. Sometimes a smile would split open around the thumb.

It was as beautiful as it was terrifying. Even as an ignorant young mom, I knew that this was strange behavior, not at all something little boys did. And I felt a fear that was dark and endless.

It did not occur to me back then that the error here was mine. Like the doctors, like everyone else, I was pathologizing Nat rather than seeing him as just Nat. I understand that I had to think that way somewhat, not because he was very different, but because as his mom I had to make sure that he was going to be able to develop to his fullest potential, to learn and to grow. But that should have been a question of education, not a judgment or some kind of sentence.

Back then without realizing it, I was looking at Nat as being strange, someone who would “never” do so many things. As Nat grew and developed at his own unique and often puzzling pace, I had to confront many issues in real time; I faced questions and dilemmas that had no real expert to ask, no right answers.

More and more, I realized that if indeed there were no autism experts, no one answer, but just a lot of “try this, change that,” then I could decide what was what. Sure, I did research all the time; I joined support groups, and I lived and breathed autism. But somewhere inside, a nugget was forming, an obstinacy that told me I was in charge here.

I knew Nat. He was not a monster, a weirdo, or hopeless. He was a little boy, an unusual, fascinating little boy. His challenges were tough, in that he had to work with maybe too many sensory, cognitive, and language-processing issues that would manifest themselves as difficult behaviors.

As Nat grew up, I went through a giant shift in perception, deep in my bones. My view of autism—albeit a definite learning and social challenge for Nat—became even less something to treat and more something that freed me from society’s rigidity.

I discovered, for instance, that Special Olympics sports was a far better “therapy,” for him than occupational, speech, or behavioral therapies. The real-world action and excitement appealed and made sense to Nat, and held his fleeting attention.

Once he got used to the noise in the gym—at age 15—he was able not only to compete and be a part of a team; he also made his first friend. And, true to Nat, friendship for him looked very, very different from anything I’d ever seen. It was completely non-verbal, consisting of hugging and watching Peter Pan. But it was friendship, nevertheless.

Autism and Nat have altered so many of my definitions and expectations that I have changed considerably. I fly my own “freak flag.” I look for people who buck convention and approach things with open minds. I have become friends with a lot of Nat’s Special Olympics teammates—they are mostly my age or just a little younger. I love hanging out at Nat's group home because his housemates are a lot like him but they talk, and the things they notice and comment about are so unexpected that I feel so at home and at ease. No wonder Nat loves it there.

Autism Essential Reads

What Autism Acceptance Can Look Like

The Hidden Global Struggles of Autism Diagnosis

Autism in 2024 is so familiar to people now that I find so much tolerance and acceptance for Nat and guys like him. The people in his life see him, and by and large, love him. One of his programs has an Instagram account, which allows me to see where his group of similar peers go. I also message with staff and program directors regularly.

But I was not prepared for the text I got from them the other night. The director wrote that one of the group attendees always tries to be next to Nat, and this verbal young woman told the director “If I were to have a boyfriend, it would be Nat because he doesn’t annoy me, he likes trains, he is a singer, and is quiet.”

My eyes filled with tears, and something very old and tender awakened in me. When I told my husband about it, I joked that “in Nat’s world this is equivalent to a serious relationship.”

But I was not really joking at all. Even if nothing else comes of this, that young woman said the “b” word. She said boyfriend. And nobody is saying “never.”