‘Will he live a normal life?’ There was silence. All I could think of were the things he WOULDN’T be able to do.’: Autism mom shares son’s diagnosis journey, ‘It is NOT an illness’

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“My pregnancy was like every other pregnancy: not a lot of morning sickness, no high risks, or complications. Avraj came 9 days late and was born via emergency c-section. He was born visibly healthy, other than having aspirated some amniotic fluid at birth, which resulted in him being kept in the nursery for the first 36 hours.

Courtesy of Parm Bhullar

I had planned on breastfeeding. However, since he was in the nursery, he was started on formula. During those first few weeks, no matter how much I pumped or nursed Avraj, I just couldn’t produce enough milk. He lost quite a bit of weight within the first 2 weeks, which meant we had to keep him on both formula and breast milk. We also noticed he would spit up after every ‘meal.’ Sometimes, he would spit up his entire feed. We were told, ‘Your baby has reflux.’ This continued for most of his first year.

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For the most part, Avraj continued to grow and develop like a typical baby. He started babbling at the right age. He was saying ‘mama’ and ‘dada’ around the 4 or 5-month mark. He started solids like a champ at 6 months. Crawled at 9 months. Took his first steps at 14 months. Normal, happy, and healthy, right? So why is this post about autism? Because we started noticing things.

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For starters, Avraj had a speech delay. Whatever babbling and words we were hearing simply disappeared around the 12-month mark. We didn’t think much of it. I was speech delayed as well. Eventually, he slowly stopped responding to his name around the same time. Odd. We decided to bring it up with the pediatrician, who suggested, ‘Let’s try a hearing test.’ Those results turned out to be normal as well. I remember being told, ‘Oh he can hear you. He just doesn’t care.’ Hmm. Okay.

Courtesy of Parm Bhullar

Instead of getting into detail about each and every sign, I’ve decided to focus on the top four for Avraj:

1) Flapping

All kids flap their hands and arms at some point, but Avraj started at 5 months old and he could not control himself. ‘Neurotypical’ children will usually stop flapping once interrupted. Avraj couldn’t stop. Whenever he was excited about something, he would immediately start flapping his hands and arms uncontrollably.

2) Repetitive Behaviors

These became more noticeable around the 18-month mark. He would simply run back and forth in the same place, over and over again. He would spin wheels on cars over and over. He would repeatedly move the same object from one place to another and back. He would repeat the same word over and over with no meaning.

3) Lack of Eye Contact and Interaction

To the ‘untrained’ eye, it would seem like Avraj was having interactions with others—but what we failed to notice was there was no actual eye contact. There was no back and forth. If there were other children around, Avraj would either barely notice them or prefer to just observe from a distance, or simply run around the room in his own little world.

4) Texture Issues

Avraj always had severe issues with food textures. Everything had to be pureed, mashed, and smooth. He would gag on the smallest piece of food. It was so bad, for nearly 6 months of his life, his diet consisted only of mashed banana, avocado, or fruit and veggie puree pouches. As a baby, he never put anything in his mouth. No toys, items off the floor, or food. We would later learn this meant Avraj missed a very crucial stage in his development.

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This list could go on and on. We weren’t the only ones to notice. Family members would also comment on some of his behaviors. ‘It concerns me that Avraj never seems to mind you dropping him off or ever really reacts to you coming back,’ my mom would say often. ‘Why isn’t he trying to hold his own bottle?’ ‘He’s not waving or blowing you kisses yet?’ I would defend him relentlessly to family, but brought up our concerns at every check-up.

As per our pediatrician, Avraj was meeting all of his milestones, excluding speech, which was still not considered a red flag, as she mentioned speech delay is not uncommon in boys. It wasn’t until his 18-month appointment the red flags were noted. Avraj still had no words. Our pediatrician was not concerned. It was at my insistence she agreed to give us a referral for Avraj to be assessed for autism.

An agonizing 4 months went by while we waited for his assessment day. The initial assessment results showed Avraj did have red flags for autism, but we would have to wait another 2 months before we could see a developmental pediatrician to give us his diagnosis. I remember my husband asking the psychometrist, ‘Do you think he is on the spectrum?’ The response was, ‘If I had to, I would diagnose him today.’

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October 23, 2018, is the day our lives changed forever. This was the day Avraj was officially diagnosed with Autism Spectrum Disorder. ‘Your son will require 30 to 40 hours of therapy a week,’ we were told. When we asked if our son would be able to live a normal life, we received silence in return. I remember leaving the appointment thinking, ‘This is it. The life I thought I was going to have is over.’ That night, as I lay in bed, all I could think of were the things I thought Avraj wouldn’t be able to do. Would he ever speak? Would he ever be potty trained? Would he have a semblance of the life I dreamed of him having?

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Now, I don’t mean for this post to be all gloom and doom, because it is not. This post is just sharing the beginning of our journey, and oh man, what a journey it has been! Since Avraj began early intervention 2 years ago, he is a completely different little boy today. He talks! My little guy, who I was worried would be non-verbal, talks! It isn’t always full-blown sentences, but it’s something, and he keeps us entertained.

Courtesy of Parm Bhullar

My picky little eater now eats a variety of different foods. The same kid who wouldn’t let a new piece of food touch his plate now will happily take a bite of something new. He may not always like it, but he’s willing to try! He’s engaged. He can sit with you and read a book, do a puzzle or even take part in pretend play. He loves any sort of car and will happily point out all the different types of cars on the road. He responds to his name, looks you in the eye, stops flapping when interrupted, and even greets you when you enter a room.

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Life is definitely different now. Has this been a hard journey for me? Yes. Has it taken a toll on my life, relationships, health, mental health, and social life? Yes. Is it easy? No. Is it worth it? YES. It was a long time coming, but I’m finally in a place where I can comfortably share our journey. As a mother, there is no love greater than the love you have for your child. The need to protect and care for them is just as overwhelming. My hope in sharing our story is to help empower other families to do the same. I also hope to inspire and show them change is possible. Have faith in your child. Believe me, you will be pleasantly surprised. There is a great lack of awareness and education on Autism Spectrum Disorder. As an autism parent, I feel it is my duty to advocate and educate.

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You see, my son is as typical a 4-year-old as any other. He loves Paw Patrol, action figures, pizza, french fries, and candy, just like every other kid his age. The only difference is he happens to be on the autism spectrum, which means he sees and perceives the world in a different way than others. It doesn’t make him any less or any more human than the rest of us. Autism is NOT an illness. It is simply a different way of being human.

Courtesy of Parm Bhullar

Our story is not of gloom and doom, but of hope and finding happiness. Receiving a diagnosis like autism for your child can be devastating. I don’t deny it. It’s a life-changer and one you must give yourself time to adapt to and accept. Somewhere along this journey, I learned one major lesson: Avraj is still the same boy he was before his diagnosis. And as his mother, I will never stop advocating for him.”

Courtesy of Parm Bhullar
Courtesy of Parm Bhullar

This story was submitted to Love What Matters by Parm Bhullar. You can follow their journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more powerful perspectives from special needs moms:

‘Of course he doesn’t, he’s absolutely fine!’ Everyone laughed it off. My little boy wasn’t going to talk, EVER.’: Mom to son with autism urges ‘acceptance starts in the home’

‘What happens to my girl when society realizes it’s not ‘cute’ anymore? How do I make people see the beauty I see?’: Mom to daughter with autism urges us to challenge our idea of beauty

‘They whispered to each other. ‘How can that be?’ My heart sank. ‘He doesn’t seem THAT different. It must be a mistake.’: Mom surprised by son’s autism diagnosis, ‘We just chalked it up to ‘every kid is different and learns at their own pace.’

‘My husband took the diagnosis as an insult. ’What is your problem?’ He began to cry, ‘I just don’t want anyone to hurt him.’: Parents to son with autism say ‘he is meant to be exactly who he is’

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