Why We Pursued Our Son’s Autism Diagnosis, and Why It Doesn’t Define Us


If I am being honest, I have always known in my heart that he was wonderfully different. Quirky, I used to say. But it wasn’t until this last February, shortly before his 8th birthday, that we pursued an answer.

Why, you ask? What changed? We were at a birthday party for my son’s best friend, and his cake had Hot Wheels on it. My son is intensely focused on cars, or really anything with a motor. The birthday boy went around the table, letting each child pick a car to keep. My son wanted a very specific car, but by the time it was his turn to choose, it was gone.

I had been watching from across the room, my body tense, as I was already anticipating what was to come. I watched his chest heaving, his tiny fists clenching and un-clenching, tiny beads of sweat forming on his upper lip, trying so hard to control how upset he was. But he couldn’t control it. He needed that car. He had to have that car.

What a brat, right? What a spoiled, entitled child! It wasn’t even his party! How dare he! What kind of crappy parenting goes on in a house that raises a kid like that? Except that he isn’t a “brat,” and we’re doing our best, thank you very much.

So I watched this scene unfold, and I couldn’t ignore the stares from everyone else in the room watching my son. I realized with a sinking feeling in my gut that his friends noticed, too.

In truth, so much of this process has felt like a gut punch — the evaluation, the diagnosis, the terminology, the criteria and guidelines and mandates and recommendations. All of it was a confirmation of the quiet whispers that have lived within me.

My sweet, sensitive, talkative boy has autism.

There, I said it.

And so began my journey to seek out some truth. Because one day, I knew he would come to me and want to know why he feels different, why he processes differently or behaves differently, or talks differently. And I am going to give him the dignity of having an answer. Of having a name and a plethora of knowledge and research and resources and names of people just like him and a whole group of us who love him and are here to encourage him and assure him that he is exactly who he was born to be. That he is bigger than autism. That the whole of him is not defined by the DSM.

The hard truth is the days since have been difficult. There is a little bit of guilt for me in saying that I have been grieving the loss of what I thought his life would look like. Life is hard for everyone, of course, but life may be extra hard for him. And it makes me sad because, well, because I am a mother. I am his mom, and I would live 100 lifetimes of heartache, if only he didn’t have to live one. Because we naturally as parents want the world to be fair and just and kind to our children. For them to guard their hearts out of caution, but never out of necessity.

This year has brought us bullying and teasing and confusion about why someone wouldn’t want to be his friend. It has brought struggle. It has brought heartache. It has brought the soul-crushing moment of hearing your child tell you they wish they didn’t know anything about autism, because then they could just be like everyone else.

But it has brought peace, too. It has brought awareness and so much knowledge. There is power in that knowledge, in the slow stripping away of fear and uncertainty. A diagnosis isn’t about learning how to “fix” my child, or how to make him adjust to our narrow confines and ideas about what the world should look like. But rather, it’s about how I can adjust my world to fit his. To learn from him, to grow with him, to nurture him. What I want is for the world to fit into his parameters. Is that realistic? Perhaps not. But here, in my small corner of the universe, I can keep accommodating his unique needs and celebrating his differences. And the truth is, I only have room in my life for the people who are on board with doing that, too.

My sweet boy recently shared some really beautiful insight into his heart. After tucking him into bed the other night, I was leaving the room and I heard his voice: “Mom, having autism is like having a freckle. It’s only one small part of me, but I wouldn’t be the same without it.”

Yes, son. Just like the sky is lit up with thousands of stars, you light up for thousands of reasons, one of which happens to be autism.

mom and son making funny faces
Sara and her son.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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