EXCLUSIVE INTERVIEW: My toddler was just diagnosed with autism - and I am out of my mind with grief

"I still remember the pediatrician's words like it was yesterday," Sarah whispers, her fingers tracing the rim of her coffee cup. "'I've seen kids moving like this before, and 50% of them are not normal.' Those words shattered my world." Like countless mothers before her, Sarah's journey into autism began not with a bang but with whispers - medical murmurs, subtle signs, and that deep, unexplainable maternal instinct that something wasn't quite right with her son Jackson.

In a candid conversation from her home in Jerusalem, where the afternoon light filters through her kitchen window and her son's carefully arranged snacks sit untouched on the counter, Sarah opens up about her family's journey with autism. From those first haunting suspicions to the daily victories and challenges of raising a child on the spectrum, she shares her raw, unfiltered story - one that speaks to both the heartache and profound love that defines this unexpected path of parenthood.

Q: When did you first suspect something wasn't quite right?

A: Throughout my pregnancy, all tests were normal, except one doctor's concern about the size of one of Jackson's organs, which righted itself. The first real moment was during birth - the midwife mumbled something after my son was born with the cord around his neck. It was a difficult delivery, and while the epidural managed the pain, I felt intense pressure.

The postpartum depression that followed was severe, and even though I've experienced it after every birth, this felt worse than the others. I knew what to look for and it was textbook: Obsessive, uncontrollable and extremely disturbing intrusive thoughts and anxiety. I was medicated for depression throughout the pregnancy and after, but it was still so distressing, and the lack of sleep sure didn't help matters much.

Q: What were the early signs?

A: All gross motor milestones were significantly delayed. Jackson didn't sit until late, and only started walking at two and a half years old. Even now, he needs physiotherapy because he struggles with basic activities like running or jumping. The failure to thrive was particularly alarming - he wasn't gaining weight properly.

Q: How did the diagnosis process unfold?

A: It was gradual. One pediatrician noticed unusual movements and in his typical gruff way said, "I just want you to know that I have seen kids moving like this before, and 50% of them are not normal" which really freaked me out and devastated me. I send the footage of my baby's movements to another pediatrician, who in turn consulted a neurologist and dismissed it.

Then followed a diagnosis of Failure to Thrive (FTT), which basically means that your baby is not growing normally (height and weight). It's the second time I have had a child with this diagnosis, so although I was obviously ditsressed about it, I wasn't overwhelmingly alarmed. I kind of felt like "Oh, I have done this before and the kid turned out ok in the end, with no growth issues, so this little guy will be ok, too."

The paediatrician, on the other hand, was getting more and more worried. AT one point, he said that we had to come back every week to weigh the baby and after seeing no weight gain in months, he said that we can choose; Either he hospitalizes him or we get him an emergency private meeting with a pediatric gastroenterologist.

He also said that hospitalizing him wasn't the best way to go, so we made an emergency appointment and took him to the gastro who took a long history.

She told us to come for follow ups at her feeding clinic and also ordered a scope - that came back normal. Then came visits to the feeding clinic, which I found particularly traumatic - seeing children with feeding tubes, severely underweight children, which looked eerily like holocaust survivors.

Finally, a child development doctor suggested an autism evaluation, even though the only signs pointing to it was his extreme pickiness with food. I'm sure it would have been picked up sooner or later, but I'm still so grateful that he encouraged us to start the process.

Q: What was the evaluation like?

A: During the first part, I immediately noticed he wasn't cooperating and behaved strangely. The diagnosis came back as ASD, high functioning. It was devastating, even though part of me had expected it.

Q: What is ASD exactly?

A: Autism Spectrum Disorder is a neurodevelopmental condition affecting social interaction, communication, and behavior. It varies greatly between individuals - hence the term "spectrum." Common signs include delayed speech, poor eye contact, repetitive behaviors, sensory sensitivities, and difficulty with social situations. Recent statistics show it affects about 1 in 36 children.

Q What did you think ASD was?

A: I thought it was like the movie Rain Man.

Q: How has education been handled?

A: Initially, they placed him in a nursery school with other ASD children, but they were lower functioning. This year, they moved him to a more appropriate school, also for ASD children. He's thriving now - receiving comprehensive treatments including speech therapy, psychology, psychiatry, and physiotherapy. The team is highly trained and exceptional at what they do.

Q: How have you coped with the diagnosis?

A: It's been incredibly difficult. I still struggle with acceptance, especially when he behaves differently in public. The embarrassment is real, and I often wonder if I somehow caused this. I've learned that this grief is common among parents of ASD children - the worry about their future, whether they'll function in society, what will happen to them after we're gone. For me, it's a mixture of anger, deep sadness and jealousy especially as I watch him struggle with things which are so easy for the rest of us. It's not a club I would have asked for access to.

Q: What are the daily challenges?

A: Every day brings different challenges. Routine changes can trigger meltdowns. For Jackson, eating is very complicated, and it always has been. He only eats a very limited choice of foods, which include things like cake, chocolate, puddings and cereal. The only healthy things he eats are peanut butter and fruit. To this day (he's nearly 4), he has never eaten anything cooked, or any protein like chicken, meat, fish or eggs. On Shabbat, he is happy to drink grape juice from Kiddush and eat challah but that's the only food he will eat from the meal. He gets very upset when we we try to offer him any food from the meal, his body goes stiff and he pulls away.

He also gets very upset from loud noises, even something as simple as my cellphone alarm. He is very sensitive to any sort of yelling as well.

Social situations are also particularly challenging - other people don't always understand his behavior. When we take him to the park, he doesn't know how to share or how to interact normally with other children. I think ideally, he would like to but he just has no idea how to start. They are working with him on this in his school.

The truth is that wishing it away doesn't work. It's like me wishing my own ADHD away, or praying for it to be gone. It just doesn't work like that. It's the way my brain works and it's here to stay, so either I can make it work for me and learn coping mechanisms or I can feel sorry for myself, which doesn't get me anywhere. And it's the same as an autism parent. Moping around and hoping things weren't this way is just not constructive or particularly helpful on any real level.

On a related note, he is an exceptionally intelligent child; he learned how to read at age 3 which threw all of us. He loves reading and he's getting better at it all the time.

Q: What advice would you give other parents suspecting ASD?

A: Trust your instincts. If you notice something different, seek professional help early. Early intervention is crucial. Build a support network - you'll need it. Remember that every child with autism is unique, and what works for one might not work for another. Most importantly, know that you're not alone in this journey. There are so many of us out there, and there are Facebook groups which are a mine of information, which can be incredibly helpful.

Q: How has this journey changed you?

A: It's made me a stronger advocate, a more patient person, and taught me to celebrate small victories. I've learned to see the world differently through my son's eyes. While it's not the path I expected (or wanted), it's taught me profound lessons about love, acceptance, and resilience. The grief doesn't completely go away, but it transforms into determination to help your child thrive in their own unique way.

As the sun sets outside her kitchen window, Sarah watches Jackson meticulously arrange his favorite cereal for dinner - the only food he'll eat tonight. "People often ask if I wish things were different," she reflects, gently smoothing his hair. "But that's like wishing away who he is. Instead of mourning the child I imagined, I'm learning to celebrate the extraordinary one I have. It's not the path I expected, but it's taught me more about love than I ever thought possible." She pauses, watching him line up his cereal pieces with precise care. "This may not have been a club I asked to join, but now that I'm here, I'm going to make it count."