15 Things I Wish I'd Known When My Son Got an Autism Diagnosis

If I could rewind to five years ago when my son was diagnosed with autism, I'd have a lot to tell my younger self.
Courtesy Jamie Pacton

Autism surprised me five years ago, and it continues to surprise me today. Over the years, I've written this sentence so many times: "On my 32nd birthday, my son got an autism diagnosis..."

And although I still remember almost everything about that morning, today, on the five-year anniversary of my son's diagnosis and my 37th birthday, I wish I could go back in time and tell myself these things:

You're not "going to a funeral."

As I wrote five years ago, when we walked into the doctor's office to get my son's diagnosis, I said to my husband, "I feel like I'm going to a funeral." I realize now how melodramatic and wrong-headed that statement was—my son wasn't dying, and the grief I felt would have been mitigated had I known more about neurodiversity or had I met the wonderful autistic adults I know now.

Don't forget to hope.

In the early days after my son's diagnosis, I despaired. There were so many people telling me my son was broken, I lost my way. Eventually, hope replaced fear, but I wish I could tell myself that my child moving along a different developmental trajectory is not a reason to lose hope.

Things will be harder than you expect, and there will be more joy than you can imagine.

The last five years have had some very rough spots, but they've also been filled with more joy than I ever expected. I'd like to tell my younger self that yes, there will be hard days, but you will be constantly surrounded by laughter, snuggles, and joy from both your children.

Autism means a different neurology, not a broken one.

Why didn't someone tell me this sooner? Autistic adults and other writers are certainly trying to share the message that our kids are different, not damaged. They don't need a cure, they need support. Knowing this on diagnosis day would have changed so much for me.

Your boy will laugh, love, connect, and grow—all in his own time.

The first prognosis seemed so grim: severe autism, probably will never communicate or show affection. Likewise checklists showing his "developmental age" were just dreary. I want to tell my younger self—don't believe these! Believe in your child. Nurture his potential, follow his interests. If he loves something—like stimming or spinning or watching Elmo—let him enjoy it. He will be a happier child if you do.

Courtesy Jamie Pacton

He will communicate.

When my son stopped talking, I thought that meant he would never communicate. I was so very wrong about this, as his use of RPM and other communication methods have shown us he's got a lot going on in his mind that he wants to tell us.

His behavior is communication too.

Behavior is communication—it's such a simple, eloquent lesson, but one that's easy to forget since so much time is spent "extinguishing" autistic kids' behaviors. When my son melts down, or shrieks, he's telling me something. My job is to listen.

You will find a tremendous community of other parents and autistic adults.

I wish I had know in the early days about the positive, supportive autism community that exists. I felt so isolated at first, but I soon met other parents in my local community and was introduced to the online communities at Diary of a Mom, Thinking Person's Guide to Autism, Ollibean, and more.

Be wary of what you read.

I read so much about autism in the early days, but much of it was "recovery narratives" and "cure autism" type books. I deeply regret starting with those books (though I didn't know better) and if I could go back, the first book I would give my younger self is Steve Silberman's incomparable NeuroTribes as a primer in neurodiversity.

Listen to autistic people.

I cannot emphasize this enough. I have learned and continue to learn so much from autistic kids, young adults, and adults. They've taught me more about my son than any expert ever did. I just wish I had started listening to them sooner.

This is more about your son than it is about you...

The "super-mom" or "parent-as-martyr" trope abounds in our culture and it's easy to fall into. Avoid it. I want to tell my younger self: You're not special for caring for your son, you're a parent who cares for and about him. And his well-being is more important than anything else.

Autism can make your marriage stronger.

There's so much out there telling us that autism destroys marriages. Don't believe it. Parenting is tough, but if you and your partner work together on it, keep it honest, fun, and real, you can grow stronger together and create a warm, loving home for your kids.

Take care of yourself too.

Don't do too much. Have a life outside of parenting. Go to the gym. Call your friends. Laugh more than you cry. Create things. Feel wonder. Breathe.

Hope for the future, but plan for it too.

Hope is a wonderful thing to have, but so is a plan. I wish I had started planning more for the future—both practically and financially—for those times when life blindsided my family. I know now how to take positive, practical steps to secure a better future for my son.

Enjoy each day and every year.

Write down the good moments too. Laugh with your children, hold them close, and enjoy every day. They will go fast.

Jamie Pacton lives in the Pacific Northwest where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com and Twitter @jamiepacton.

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