Can you tell us a little about your child and when you first began noticing signs that led you to seek a diagnosis? 

I first noticed signs around the time Ammar was 20 months old. He gradually stopped speaking and became fixated on walking in circles. Over time, he lost all the words he had learned, struggled with fine motor skills—such as feeding himself or holding a pencil—and seemed to lose interest in the world around him. These changes led me to reach out to our pediatrician for guidance.

What was the process of getting an autism diagnosis like for your family? Were there any major challenges or surprises along the way? 

Our pediatrician referred us to ECI (Early Childhood Intervention) and a neurologist within the Texas Children’s Hospital system. ECI moved fairly quickly—we had an appointment within about six weeks, and services like ABA (Applied Behavior Analysis) and speech therapy began shortly after. We also enrolled Ammar in private speech therapy.

The neurologist appointment was especially important because our insurance required an official diagnosis to begin private ABA therapy. That process took eight months, and we were finally able to start private therapy about a month later.

Throughout this time, ECI was our primary source of guidance. The diagnosis of autism came as the biggest surprise. We had only ever heard the term used in sensationalized ways—portraying individuals as savants. But for us, the journey looked very different.

How did you and your family process the diagnosis emotionally, and what helped you most during that time? 

I was in deep distress, and my husband was grieving—the kind of grief that comes from losing the child we thought we had. I found myself questioning Allah: Why me? Was I being punished? How could this happen to us? Looking back, I realize I was young and naïve. There was just so much happening at once, it felt impossible to breathe.

We had recently completed Hajj, pouring our hearts into every prayer, asking Allah to bless Ammar’s upcoming neurologist appointment with good news. But that hope never came. Everything seemed to happen all at once: we met with the pediatrician in May; Early Childhood Intervention services started in June; Hajj was in August; I had gallbladder surgery in November; our house sold that same month; my father was diagnosed with cancer in December. We spent that entire December living in hotels and Airbnbs until our new home was ready. In early January, Ammar began full-time ABA therapy, and soon after, I had to leave him behind to tend to my father across the country. Our new home had no internet for nearly a year. I started a new job in June, and by December, I had to ask them to let me work remotely—something unheard of back then, before the pandemic normalized it.

It truly felt like the world was crashing down on me. And so I kept asking Allah: Why me?

Meanwhile, my husband turned to silence, anguish, and work. I can't fully speak for him, but as the breadwinner—the qawwaam of our household—he was carrying more than I could probably see at the time.

So how did we get through it? Slowly. Painfully. With a lot of trial and error. What truly helped was finding other parents on similar journeys, especially those who shared our background and faith (thank you, Dar-us-Sakina and MUHSEN). It helped to block out toxic people, to rebuild my relationship with Allah one step at a time, and to seek therapy when I needed it. It helped to throw myself into learning how I could best support Ammar. I stayed mindful of my other children, my husband, and the precious relationships in my life that could still bring me joy and strength.

And, maybe most importantly, I didn't forget myself. It took time to realize, but I deserved to live too.

I've always loved to travel, and I never let that passion die. I take Ammar with me wherever I go, and no one can tell me otherwise. Whatever your passion is, hold onto it tightly. Let it remind you that even in the hardest moments—you are still here, you are still worthy, and you are still allowed to live.

Looking back, what resources or information do you wish you had access to earlier in your journey? 

Having a checklist available at all times outlining what steps to take after receiving a diagnosis would be incredibly helpful. It's overwhelming to keep track of waivers, services, and who to contact—especially when you're also navigating major changes like moving. Emotional support is just as important. Knowing there are parents who have walked this path before us brings so much comfort; they help us make sense of the "why us" moments. Doctors should provide families with a list of relatable and culturally sensitive support groups right from the start. I only discovered Dar-us-Sakina because it was part of MUHSEN at the time, and my cousin happened to volunteer with them.

How has your experience parenting a child with autism evolved over the years? What has changed most in how you approach things now?

I wish someone had told me that all of this could have been approached with more kindness. At the time, I was in the most negative headspace I had ever experienced—and that’s saying something, because I’m usually a very happy, extroverted person. I wish I hadn’t let that take away from my son's childhood. After all, he was just two years old. I wish I had spent more time playing with him instead of trying to train him.

ABA therapy was helpful, but I now realize it should have stayed at the center, while home should have been a place of joy and connection. Today, I presume competence in my child, and it has completely transformed the way I interact with him. We need to believe in our children—that they can do it, that they can complete the task, that they can learn to be independent—with our support, and eventually, with gentle encouragement, on their own.

What are some of the biggest joys or milestones that have stood out to you in your child’s journey?

Potty training was a major milestone for us—and nighttime training was an even bigger one. Ammar mastered daytime training around the age of three, but nighttime training didn’t come until just a few months ago, at the age of eight. His growing ability to understand and follow through has been such a huge victory for us. While his progress isn't on the same timeline as a neurotypical child, we've come a very long way. One of our greatest joys is seeing him show, in his own way, that he absolutely can do what he needs to.

And funny enough, even the little things bring us joy—like when Ammar playfully snatches a toy from his younger sisters or gives them a mischievous tap on the head as he walks by. These "normal" sibling interactions are a blessing we don't take for granted.

Have you encountered any cultural or community-specific challenges as a Muslim parent of a child with autism? 

I am ethnically Pakistani but grew up in the USA. It’s incredible—and often heartbreaking—what you hear about autism in Pakistani communities: phrases like "paagal" (lunatic) or "slow" (mentally retarded) are still far too common. So many harsh judgments. Thankfully, I was fortunate not to encounter that negativity, not even from my in-laws.

When I visited Pakistan in December 2024, I saw encouraging signs of change. In Karachi, there’s now even a roundabout dedicated to autism (for those curious, it’s in KDA Scheme 1)! Awareness is growing, and people are becoming far less judgmental. Alhamdulillah, my personal experiences within the Muslim community have been mostly positive.

That said, I’m very aware that not everyone’s experience has been the same. Many autism families have faced judgment and exclusion, especially in masjid spaces. I recognize that I may be fortunate—because my son is nonverbal, his behavior is often more easily accepted in public or community centers.

In my neighborhood, which is very diverse, I don't feel outcast, but I also keep to my comfort zone, mainly spending time with my family. I’m not afraid to venture out and expose my children to different people and experiences, and so far, Alhamdulillah, I haven’t faced major issues.

We need to be strong. We need to be brave. We need to help our children integrate into the world with the same spirit we would have had if they were not neurodivergent.

What advice would you give to other parents who are just starting this journey? 

Start with Alhamdulillah—not “why me.” Immerse yourself in Islam, study it deeply. It has been, and continues to be, the reason I survive. We often say we believe in Allah, but do we truly believe Him? Believe Him when He says He is Ar-Rabb, the Sustainer. Trust that He is taking care of you, even when it’s hard to see it.

Take things slowly—there is so much to absorb, and it can feel overwhelming. Remember the ayah: "Wa makaru, wa makar Allah. Wallahu khayrul maakireen." They plan, and Allah plans—and Allah is the best of planners. We may never fully understand the wisdom behind why certain things happen, including why we were chosen to raise a child with special needs. But I truly believe it’s part of a greater mercy.

Maybe, just maybe, my own deeds weren’t enough to get me to Jannah, so Allah sent me an extra life—like a bonus round in Super Mario—for those who get the reference! A chance to serve, to grow, and to earn reward through this journey.

Surah An-Nisa, Ayah 5 reminds us to treat them with kindness. If Allah is telling us that, then there must be a magnificent reward waiting for us. This life is fleeting. What matters most is how we care for what Allah has entrusted us with. If we do our part, abide by His laws, and hold on to hope, then inshaAllah—our eternal home in Jannah awaits. And there, our beautiful children will be whole, healed, and without any needs—let alone special ones.

Alhamdulillah. Tawakkul ‘ala Allah. Trust in Him always.

How has Dar-us-Sakina supported your family, and what has your experience been like with the programs and community here?

The DUS Sunday School program, seasonal festivals, Gala, and Eid events have all been meaningful parts of our journey—but what stands out most to me is the Power Moms WhatsApp group. It’s a circle of incredible women—mothers who would go to any length for their children. There’s a depth to our connection that I believe is rare.

It’s a true no-judgment zone. When one of us is feeling low, the rest lift her up. When someone is overwhelmed, help comes running. It feels less like a group chat and more like a sisterhood—one rooted in compassion, strength, and the Islamic value of al-amru bil ma’ruf (enjoining good).

These women are resourceful, wise, and always ready with advice or encouragement. Because we share the same beliefs, our connection goes beyond just shared experiences—it’s spiritual. We remind each other of Allah’s mercy and find comfort in His love, together.

Jami Sabety-Atto
April 30, 2025