Inside: I need to talk about something I’ve avoided for far too long. A topic that elicits big emotions and strong opinions. But sharing my story has helped hundreds of thousands of parents, and my son would like to do the same. So in this post, I want to share our story before and after our son’s autism diagnosis at the age of 11 and shed light on the challenges and breakthroughs we’ve encountered.
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I need to talk about Autism.
It’s a topic that I’ve shied away from for far too long. Because, let’s be honest, It’s a topic that elicits big emotions and strong opinions.
But it’s time to rip off the band-aid and share our story. Because we know the power of sharing our parenting journey. We’ve helped hundreds of thousands of parents transform their lives. And my son wants to do the same.
We get it. As parents raising autistic children, we know how hard you fight to get your kid understood. To get others to see them as you do.
We know the massive struggles and the joy in seeing your child’s unique strengths shine. We understand the importance of creating a safe and supportive environment for our kids to thrive.
We know your child doesn’t need to be fixed, changed, or cured. Our intention is to help you become the parent you want to be for your unique child.
…And that’s the goal of this week’s podcast – to reframe a diagnosis as a tool to understand your child.
It does not limit their potential or change who they are. So today, we are going to share own personal story of the before and after of our oldest son’s autism diagnosis at the age of 11.
This is just the beginning of a series where we’ll delve deeper into this topic, providing resources and insights to support you on your own journey.
We want to create a safe space where you can
We want to empower you to have those important conversations, even if you’re unsure about finding the right words.
So, join us as we break the silence about autism.
I Didn’t Realize That I Knew
In the decade I’ve been helping parents with challenging children, I’ve heard all the fear, uncertainty, and longing for answers that surround the topic of autism.
Parents are bombarded with messages that give them a sense of doom.
In the midst of this fear-driven narrative, I want to offer a different perspective – one grounded in our own personal journey.
My aim is to share a story of hope. I want to share my son’s story and the experiences that have transformed our understanding of what it means to be a parent to an autistic child.
People often ask, “When did you know?”
Our oldest was diagnosed late – at the age of 11. But I guess I knew something was different about my son from the very beginning.
The truth is, in the first three years of his life, when he was only in my care, we didn’t face major difficulties.
He was highly verbal, communicating his wants and needs with words and signs. We learned from him and responded to his needs. As first-time parents, we had no frame of reference, so we didn’t know that our extremely rigid routines, carefully curated diet, and potty training himself at just 18 months wasn’t the norm.
My mom often criticized me for my rigidity, but I knew that any deviation could make life challenging for him (and all of us). Looking back, it’s clear that my instinct guided me.
It’s only with hindsight did we realize his need for the certainty of rigid routines and his picky eating were signs of Autism. And he potty trained because he hated the sensory feeling of being wet.
So, you could say I knew from the very beginning. But I didn’t realize that I knew.
We Needed Some Extra Support
However, the gap kept getting bigger…
While other kids played freely, my son was busy arranging toys in precise lines, organizing them by color and shape.
And let’s not forget the parks! We had “Pinch Park,” where a girl once pinched him, and “Dragon Park,” which housed a dragon statue. It seemed pretty cute, to be honest, but looking back, those early signs of something bigger.
It was around the same time he also had this obsession with letters and numbers, acing the alphabet before he could even tie his shoes. Yet, when it came to writing, things got rough. It was like his brain was on overload, and we couldn’t figure out why.
Preschool brought on a whole new set of challenges. One day, a little girl bit him, and he took that lesson to heart. The biting became his go-to move for a solid three weeks. It was like he had found his secret weapon, his escape route from whatever overwhelmed him.
That’s when we knew we needed some extra support.
We went for a full-on neuro-psych evaluation, hoping to get some answers. I specifically mentioned autism and ADHD. But the experts seemed to brush those possibilities aside, stating his ability to describe feelings and make eye contact.
But what they didn’t understand was that he could look in someone’s eye if he were forced to and could describe a character’s emotion but that he struggled to express his own emotions. He couldn’t say, “I feel sad,” when he lost his favorite toy.
Instead, he got diagnosed with sensory processing disorder and dysregulated mood disorder. Occupational therapy and social work became our new best friends. Those therapists built a strong bond with my kid, which I’m truly thankful for.
(For more details about this part of the journey, check out the full episode on YouTube.)
“Visitor Syndrome”
Despite this help, the gap between him and his peers kept widening.
It all started to go south with the imminent arrival of his sister.
You see, my son had something we called “Visitor syndrome”.
Any time we had a friend coming over, he struggled to regulate himself. It was like his world turned upside down, and he would act out, saying inappropriate things and having meltdowns. It was overwhelming for all of us.
And then, when I got pregnant with my daughter, it was like we were in a constant state of expecting a visitor.
Aggressive behaviors and running away became more frequent. I’m talking about him running down the halls at school, hiding in closets, and engaging in risky behaviors. Meltdowns were a regular occurrence, and they were intense and could last 3 or even 4 hours at a time.
Needless to say, we were barely keeping our heads above water.
I remember one incident at school when he defiantly wrote “No” all over the walls with a marker. To me, it was a clear cry for help, an attempt at being understood. But the school just saw it as disrespect. It was heartbreaking.
But it all came to a head one weekend when we were excited about a long-awaited visit from a dear friend. He was dysregulated at home, so I decided to take him out to the store. The bright lights, sounds, and smells triggered him, and he completely lost control.
I tried driving home, but he was kicking the back of my chair relentlessly. We had to pull over, and he started stomping on the car. It was a terrifying moment. I couldn’t help him and I had to call for help.
Getting Autism Diagnosis
We ended up in the hospital – the fourth emergency room visit that month – and this time, they insisted on sending him to residential treatment, saying he was a danger to himself and our family.
I wasn’t really given a choice, but if I agreed, I had some choice in where he went. I wanted somewhere that would understand his sensory needs and the challenges he faced.
I barely remember the journey to the residential center. It was a whirlwind of ambulances and police escorts. When I arrived, I was ushered into a reception with two hallways coming off. It was as I was filling out forms I was asked one of the most important questions of our lives…
Does he have autism?
Although he didn’t have an official diagnosis, I explained about his sensory processing and other challenges. And that sent him down the left corridor. To therapy, and understanding, and ultimately, a diagnosis.
I can’t imagine what it would have been like to go down the other path. Where they just saw the kids as naughty, bad or dangerous. Most of those kids’ stories didn’t end well.
But for us, it was a pivotal moment. One that opened our eyes to a new understanding of who he is.
His autism diagnosis opened up a whole new world for us. It wasn’t a magical fix, but we started to embrace his uniqueness and celebrate his wins, no matter how small. Of course, meltdowns still happened, but with understanding and support, they became less and less frequent.
Our journey hasn’t been easy, but it has been a journey of growth and discovery. We’re learning and growing alongside our kids, celebrating every step forward.
And you know what? We wouldn’t change a thing because our kid, with all his quirks and challenges, is an incredible human being who has taught us so much about love, acceptance, and the power of embracing our differences.
I’m Asking for a Little Favor
Our son has just graduated high school, and we are so proud of him and how far he has come. I am so grateful that he’s a part of our lives.
Despite the challenges we’ve faced, he wants us to share his story.
I remember feeling a bit nervous when his story was being written for the book. He was about to turn 18, and I worried that he might change his mind and not want his story out there anymore.
But then I asked him, “Hey buddy, are you still okay with your story being told?” And you know what he said?
He said, “Yeah, why wouldn’t I be? If it can help someone else.”
So, we’ll keep sharing his journey and ours, knowing that he’s here to teach us and make a difference. We wouldn’t be doing what we do now if it weren’t for him.
Now, I would like to ask you for a little favor. If you’ve been touched or inspired by his story in any way, he would really love a shout-out or a heartfelt message, letting him know that his story made a difference in your life. It would mean the world to him.
My Son Helped So Many People
And I think he deserves it. He has touched the lives of so many people and families, including ours. He has brought a sense of purpose and fulfillment that I never could have imagined.
You see, our kids, whether they have an autism diagnosis or not, march to the beat of their own drums. And it’s our job to learn from them, to listen to them, and to create an environment where they can thrive. They have so much to teach us.
If you want to listen to our full story, tune in on your favorite app. (Warning: It might just make you cry).
Seriously, it’s been healing and cathartic for me to share our journey and face my fears. This podcast has become a safe space where we can have conversations and build a community.
In the next episode, we’ll dive into our journey with a sensory processing disorder. It’s a topic full of ups and downs, and we’re excited to share it with you.
And until the next episode, remember,
We’re in this together!
Calm the Chaos Parenting is a podcast offering parents practical tools and strategies to navigate the challenges of raising strong-willed, highly sensitive, and neurodivergent children.
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This content was originally published here.