6 things I wish I’d known when my child was diagnosed with autism

Up late? Nervously typing “signs of autism in toddler” in your Google search bar? Or maybe you are beyond that point and have just received a diagnosis for your child. Maybe you know nothing about having a child diagnosed with autism. I get it.

Autism can be tricky because there often is a period of “unknowing”. But unlike other diagnoses, rarely is a newborn diagnosed. From the period of being a baby until my son was diagnosed at 3 years old, it was very lonely and isolating. I felt misunderstood. 

Related: What to do when your child is diagnosed with autism—for you and your child 

Attending large functions was very hard for him, but I felt expected and pressured to attend. He was expected to act typical when he wasn’t. Since there wasn’t a “concrete” reason he had a hard time at these events, support in some places was hard to come by. I wasn’t surrounded by anyone with a shared experience, and that felt scary and lonely. 

Luckily, I had a core group of girlfriends that, although weren’t experiencing the same thing, supported me and my son in the most loving manner. Without that, my journey would have been much harder. I only wish someone could have told me that we would find our place, we would be supported and my son would thrive—being exactly who he was meant to be. Once you find your people, it’s a lot easier to see that. I write this now to encourage the parents sitting where I was 10 years ago.

Things I wish I’d know about having a child diagnosed with autism 

1. Some parts of the journey are going to really stink

I am not going to sugarcoat it. It’s different for everyone, but there will definitely be hard times. For me, the hardest part was from when my son was a baby up until he was 3 years old. I didn’t know what was going on. The wondering, the guessing, the unsolicited advice from people that have literally no idea what they are talking about. It was all just so much. For you, the hard part might be something else—but it will be there. That’s the long and short of it.

2. You will meet some of the kindest people you’ll ever know

I know you might not want to be part of this club yet. I get it, I didn’t either. But you will get there with the help of some truly wonderful people. It might be a speech therapist that comforts you. It might be an occupational therapist that helps your child learn how to thrive in a world that wasn’t built for them. It might be a teacher that sees something special in your child and fosters it.

hese are all people I never thought about meeting when I was a new mom, people I never thought I’d need. They became my angels, my helpers, my friends. You will need these people and you will be helped by them in ways you can’t even imagine.

Related: Child diagnosed with autism? 7 steps to take, mama

3. Many of the things you’re anxious about won’t actually happen

I was worried my child would never be able to communicate with me. He began talking in full sentences around 1st grade. Some nonverbal children use speech devices and it is a game changer. 

I worried my child would never have friends (this was a big one). But my child has the most lovely best friend, Declan, who is an angel. Declan is typical and their friendship is magical. 

I worried about kindergarten. It was totally new. I worried about going to a new school for 3rd grade. It turned out to be better than the old one.

You see, much of what I worried about never even happened. So my advice to you? Stay in the moment—you will have plenty to do there.

4. You’ll wonder how it’ll impact their siblings

My son has a younger brother and a younger sister. No one is better with autism than siblings that grow up in close proximity to it. We swear my son started talking just to tell his chattering, whip-smart younger brother to leave him alone.

The baby in our family, a little girl, has always been kind to those with differences. She now wants to start a horse therapy business for “kids that need a little extra help” when she grows up. Whatever backseat the siblings need to take in some moments, they will grow, learn and be better because of it.

5. Things that are really hard now, won’t always be

My son used to be very anxious around strangers. A neighbor would come to the door or say “Hi” to him on a walk and he would cry. He is now one of the friendliest 10-year-olds I know. He was also once terrified of our dog. For years, he couldn’t be around her. Now, he wants to be a pet sitter when he grows up. It is hard when your child has fears that aren’t conducive to real-world living, but you won’t always stay in that hard moment. Things will get easier with time.

Related: The loneliness of being a ‘special needs’ parent is real

6. You may feel like you aren’t up to the task

This is a big one, and I still struggle with it. I often wonder what mistakes am I making as a mom? How did I screw it up? 

But here are some real questions to ask yourself. Are you trying? Do you love your child? Then you are indeed up to the task. Find your tribe—friends that get it, mom blogs that talk about it, resources that understand—wherever you can. It might not always feel easy, but you are stronger than you know. Your gut feelings and intuition about your child are better gauges than just about any opinion you will get. Go where it feels right.

Related: Two of my sons have autism. Here’s how I’ve moved beyond guilt to thrive on the spectrum

I’ve heard it said, “If you meet one person with autism, you’ve met one person with autism.” Meaning all experiences with it are very different. This is my experience. Yours will be yours.

If seasoned parents of an autistic child or loved ones of someone on the spectrum are reading this now, I encourage you to use this in order to spark a conversation. Your input will greatly strengthen this message and help others. Talking about autism not only helps those feeling isolated, but it also helps spread awareness so that others may not have to experience that same isolation.

A version of this post was published December 5, 2022. It has been updated.