Parenting
The Essential Guidance I Never Knew I Needed After My Child’s Autism Diagnosis
by Jenna
Oct. 20, 2023
Throughout life, certain pieces of advice resonate deeply and linger long after they are given. There’s guidance you hold dear, and then there’s the advice you smile at politely while internally dismissing it as nonsense.
One particularly misguided suggestion came from my grandmother back in third grade, just before a spelling bee. “Just remember, Jenna, spell it out like it sounds.” It seemed wise at the time, but when faced with the word “anxious,” I froze. Following her words, I spelled it “a-n-c-h-o-u-s.” A disaster, yes, but that moment stuck with me.
Fast forward three years, and I found myself grappling with my son’s autism diagnosis. It was a journey that began with my gut feeling, which was confirmed five months later. The first week after that diagnosis was a whirlwind of grief and uncertainty; I felt like I was drowning in despair for my son and the hurdles that lay ahead.
I cried in the shower, during drives to the grocery store, and whenever I tried to say the word “autism” to family and friends. I was mourning the picture-perfect life I had envisioned for us — soccer games, birthday parties, and sleepovers — and instead faced a reality filled with questions about my son’s future independence. I felt ill-equipped to be the mother he needed.
In my quest for understanding autism, I spiraled into a rabbit hole of Google searches, devouring every article and book I could find. I felt isolated, like I was on an island where sympathy was abundant, but true empathy was rare. In hindsight, I realize that much of that isolation was self-imposed. I’m not great at expressing my emotions; even my husband thought I might not even like him in our early dating days.
During my struggles, I reached out to family and close friends for support. Their encouragement was crucial in helping me move forward. Though much of what they said didn’t resonate at the time, certain pieces of advice have stuck with me.
You Know Your Child Better Than Anyone Else.
A couple I’ve known for nearly two decades offered invaluable insights during those early weeks. They have a high-functioning son on the spectrum and were eager to share their journey with us. One piece of advice that resonated was the idea that “If you’ve met one child with autism, you’ve met one child with autism.” Autism is not a one-size-fits-all diagnosis; it varies greatly from person to person. Every child has unique strengths and challenges, so generic solutions simply won’t work.
This advice may seem cliché, but it’s a principle I now live by with all my children, regardless of their needs. As parents, we spend the most time with our children — not the doctor who sees them for 15 minutes or the teacher who makes snap judgments based on limited observations. While there are capable professionals in the field, they cannot fully grasp the potential of any individual child. You love your child in a way that no one else can. Don’t hesitate to advocate for their needs. If an ABA therapist isn’t engaging your child, find someone else. If a speech pathologist misdiagnoses, seek a second opinion. Time and resources are precious, so make sure you’re using them wisely. You are your child’s best advocate, so step up and be proactive.
Their Diagnosis Doesn’t Define Them.
Moms often provide the most heartfelt and practical advice when it’s needed most. After I researched autism and understood the signs, I called my mother in tears, knowing deep down what the diagnosis meant. Coincidentally, she had her own suspicions about my son’s behavior.
In the midst of my emotional turmoil, I recall her saying, “This doesn’t change who he is.” At the time, I dismissed it because I was focused on the obstacles ahead. I was so immersed in advocacy and intervention that I allowed autism to overshadow my son’s character. Yet, at just 13 months old, his personality was already rich with qualities — sweetness, stubbornness, and humor. Autism is a part of his life, but it does not define him.
Everything Will Be Okay.
The phrase “I’m sure everything will be just fine” was a hard pill to swallow. Back then, I perceived it as a dismissal of my concerns. I felt insulted, as if my worries were unfounded.
However, this advice served as a reminder of how people often respond to discomfort. Many lack a deep understanding of autism and want to offer reassurance, even if it feels inadequate to us. Looking back, I should have allowed myself to accept their kindness rather than interpreting it as denial.
Find Your Community.
I found this advice in a handout from a local support group, and I took it to heart. I made a concerted effort to connect with other parents of children on the spectrum. Most importantly, I built relationships organically. During my son’s therapeutic day program, I waited in the lobby where I met other caregivers. We bonded over our shared experiences, discussing everything from parenting challenges to the struggles with health insurance.
Be selective about your support network. Surround yourself with those who lift you up, not drag you down. Friendship can be found in unexpected places, and sometimes, the best connections are made through shared experiences.
There Will Be Ups and Downs.
A friend introduced me to a remarkable “warrior mom” known for her fierce advocacy for her child on the spectrum. During our conversation, I mentioned how I hadn’t cried in months, to which she replied, “Don’t get too comfortable; this journey has its ups and downs.”
While the early days were undoubtedly the toughest, I still find myself shedding tears from time to time. Whether it’s the heartbreak of watching my son struggle or the overwhelming joy of his achievements, the emotional roller coaster is real.
To the mom who has recently received a diagnosis and feels lost, know that you are not alone. The vision of your family may have shifted, but it can still be beautiful. Soccer games, birthday parties, and friendships are all within reach, and they have been part of our journey too.
You will emerge from the fog. You will encounter well-meaning but misguided advice from various sources. Your patience will be tested, and you will question your own strength.
Through it all, remember that the love you have for your child is your greatest asset. That unconditional love is what they need most right now.