An Afghan Mother’s Autism Journey: From Diagnosis to Advocacy

I remember it as if it were yesterday — the day my son Noah was diagnosed with autism at just 18 months old. In many ways, that was the day a part of me changed forever.

Leading up to that appointment, I was overwhelmed with anxiety. I didn’t know what to expect. In truth, I didn’t even fully understand what autism was. I had never heard of it before, nor had I seen it within my family. The possibility alone felt unfamiliar and frightening.

The diagnosis came as a profound shock.

During my pregnancy, I was filled with excitement, mixed with the natural nervousness of becoming a mother. When Noah was born, everything seemed perfect. He met all his early milestones - he smiled, made eye contact, sat up, stood, and even began walking before he turned 10 months old. There was nothing, at the time, that raised concern.

However, as he grew, I noticed he frequently experienced ear pain. Introducing solid foods was also a struggle; he resisted anything that wasn’t puréed. I made repeated visits to the doctor, expressing my concerns, but they were often dismissed. Eventually, I changed doctors. Around the time of his 18-month vaccinations, Noah was babbling—saying “mama” and “dada.” Everything still seemed normal.

Then, about two weeks later, something changed. I want to be clear: I am not blaming vaccines. It was simply the only recent change I could identify at the time. What I experienced next, however, was undeniable. Noah stopped making eye contact. When I called his name, he no longer responded. I began noticing repetitive behaviors—spinning, hand flapping, and walking on his toes. At first, I didn’t recognize these as signs of autism. I thought he was simply being a child.

Still, something in me knew to seek help. I voiced my concerns, which led to a referral to a pediatrician. That appointment changed my life. I watched as the doctor gently attempted to engage Noah—calling his name, encouraging him to follow movements, trying to capture his attention with toys. But Noah seemed distant, as though he were in his own world.

Then, came the words I will never forget: “I believe he has autism.”

In that moment, everything stood still. My throat tightened as I tried to hold back tears. I felt confusion, fear, and an overwhelming sense of helplessness. I didn’t fully understand what autism meant, and I found myself asking, “Why?” I left the appointment in a daze. I barely remember the doctor’s instructions. Sitting in my car, I felt an urge to scream, to question everything, even to question God.

Telling my husband was one of the hardest moments of my life. In all the years I have known him, I have only seen him cry twice—once after a devastating miscarriage we experienced before Noah, and the second time when I shared Noah’s diagnosis.

In the weeks that followed, I fell into a deep depression. I felt lost and unsure of how to help my child. The most difficult part was acceptance.

As an Afghan-Canadian, I also faced cultural challenges. In many communities, children with special needs are often misunderstood or labeled unfairly. I remember asking my doctor if it was something I could hide from family and relatives. He gently explained that I couldn’t—and more importantly, that I shouldn’t. I would need support, and others would need understanding, because autism presents differently in every child.

After about a month, I made a decision that changed everything. I chose to face reality. I stopped asking “why” and started asking “how.” How could I help my son? How could I support him? How could I be strong for him? From that moment on, I made a promise: I would be Noah’s voice.

Although doctors explained that he might be nonverbal—and that no one could guarantee whether he would speak—I refused to let uncertainty define our future. I began connecting with programs and other parents navigating similar journeys. With the support of a caseworker, I enrolled Noah in occupational therapy to help with feeding challenges. Over time, I also introduced ABA therapy and speech therapy. My life quickly became centered around ensuring Noah received the support he needed.

Through this journey, I met many families. I came to understand that autism is a spectrum, that each child is unique, with their own strengths and challenges.

The day I realized Noah had the ability to learn was the day my mindset truly shifted. I reminded myself: You are his mother. You are his guide. Since then, I have committed myself fully to advocating for him and creating the best possible life for him.

That doesn’t mean the journey is easy. There are still days when I cry—quietly, privately. While I may appear joyful and energetic on social media, the reality behind the scenes includes exhaustion, emotional strain, and moments of deep longing. But I keep going.

Because I know I am not alone. I am supported by my husband, my children, and my extended family. And I have learned that having a strong support system is essential—especially within our Afghan community. We must move away from judgment and toward education, compassion, and understanding.

Autism has always existed in our communities. The difference now is that we must choose to speak about it openly, without shame. We must be the voices for our children.

There is still a quiet wish in my heart—to one day hear Noah say “Mom,” “Mama,” or “Mommy.” It is something I pray for deeply. But even as I hold onto that hope, I continue forward with strength, determination, and love. To any parent walking a similar path: You are not alone.

We are in this together.
— Mariam