The Power of Parent Community and Advocacy Beats Isolation Every Time

Sharing our stories helps us remember that we’re not as alone as we believe.

I remember staying up late, alone with the glow of my laptop, searching for answers to unanswerable questions. My eyes glazed with anxiety and exhaustion.

other parents who “get it” are priceless

Parents of newly diagnosed autistic children often feel like they’re navigating an unprecedented, indecipherable, and isolating journey.

Many parents don’t know anyone else coping with the same diagnosis. They already feel alienated, acutely aware of how differently their child is behaving from their friends' kids.

But we’re not as alone as we believe.

Many, many parents have been here before us.

There’s a vast community of parents who understand the challenges, and the joys, of raising an autistic child.

When my son Ocean was four, he was accepted into the ASD Nest Program (which combines inclusion and social development within a smattering of NYC public school classrooms). The program offered monthly parent coaching. I always made time for those groups, because they provided a safe space to learn best practices, but also to share stories, seek advice, and find emotional support from parents like us, but with slightly older kids and a little more experience.

During the first parent group I attended, the sense of relief extended from my shoulders to my gut like a full, deep sigh.

The empathy, wisdom, and understanding of the parents of older kids in the program healed scars of isolation that I hadn’t even known were there. It was like I had discovered my long-lost clan who truly understood me.

They weren’t shocked by my stories. In fact they nodded with understanding, then shared book recommendations, tips, and reassurance.

That is when I first became aware of the profound impact that having a community of parents who “get it” can make. Meeting other parents who understood the unique struggles and triumphs of raising an autistic child actually improved my mental health.

Now that my son is in high school and doing relatively well, I host online groups for a few organizations. Parents can join to connect, share strategies, struggles, successes - and ask questions.

I know first hand that it takes energy to reach out and connect after an exhausting day, especially at first. But you can show up imperfectly. You can connect in ways that you’re comfortable. You’ll probably have interruptions. You may be listening as you cook dinner or commute or do your best to keep your kid safe. You may need to come late or leave early.

Just please, keep coming back, be yourself unapologetically, and strengthen bonds with this chosen family you’re creating.

The reward is the confidence and courage that comes from knowing you're not alone, you're not a bad parent, and others acknowledge your efforts.

Advocacy is another essential component of our journey as parents of autistic kids.

Whether it’s advocating for appropriate educational services, accommodations, or healthcare, our voices matter. By speaking up and doing what we can within the system, as well as pushing to change it, we can support each other, because there’s power in numbers.

One of the most empowering things we can do is to connect with others who share our experiences. There’s a community of parents here to support you as you support and advocate for your child. You can also find local communities if you prefer. We’re here, sometimes right next door.

We need all of us to join this movement, no matter what stage in your awareness you are, how many needs and questions you have. Find your community, because you will learn and grow, then help the parents who come after you.

Together, we’ll create a kinder, more inclusive future for our neurodivergent kids.