Looking back, my advocacy days didn’t just begin in 2019 when I started my work with PCIC—they began 13 years ago when my son received a diagnosis of autism and ADHD. Prior to that, he had already been diagnosed with a speech delay, which has since evolved into a severe speech deficit—or rather, apraxia, as I’m continuing to learn.
Not long after his diagnosis, he experienced two febrile seizures, followed by a 10-year period with no seizure activity. In 2023, he had three unprovoked seizures that landed him in the hospital for a weekend. We left with an epilepsy diagnosis.
Autism isn’t something I talk about regularly. It’s a lonely world for a parent. Quite frankly, most people have no idea what it’s like. He’ll be 17 in June, and while life is easier in many ways, every day is a reminder of how different he is. Different isn’t bad, right? Maybe. But it’s not always good either—especially when all you want is to fit in.
He can’t carry on a typical conversation. I don’t know if he’ll ever drive, go to college, or live on his own. I doubt he’ll get married or even have a girlfriend. Like many teenage boys, he wishes for a girlfriend. Unlike other teenage boys, he doesn’t even know how to make friends.
I live with guilt. Guilt that comes in waves and leads to sadness and anger. Guilt that I didn’t research enough to make a fully informed decision about vaccines. We selectively vaccinated—one at a time, never when he was sick, spacing them weeks to months apart. Sometimes I felt sick driving to the pediatrician. Other times, I’d feel uneasy the day before and work up the courage to cancel. We played Russian roulette—and we lost. I did this to my child. Even though I know I didn’t know better at the time, it still hurts.
Anger tends to drive me. It fuels me. I have to channel that energy into something—something that will help him and prevent other children from being injured. That’s what led me to where I am now: advocating for him, my other children, and every child in Pennsylvania.
For years, there has been a war between autism awareness and autism acceptance. A war over puzzle pieces as symbols. A war over “Light It Up Blue.” Nothing ever seems to satisfy this movement. Meanwhile, autistic children are suffering—self-injurious, in pain, and trapped speechless in their own bodies—while highly functional individuals debate issues that won’t solve real problems for aging autistic individuals or their aging parents.
If people aren’t aware of what autism is—or what it truly looks like—how can there be acceptance? How can you accept something you know nothing about? Acceptance requires awareness. Yes, you can be kind to everyone. But to truly accept something, you must first understand it. Without knowledge or awareness, there is nothing to accept.
Sure, almost everyone has heard of autism by now—but do they truly understand it? I’m not talking about high-functioning individuals with mild quirks. I’m talking about the reality that over half of us parents experience: elopement, self-injurious behaviors, perseveration, 24/7 care involving toileting and hygiene, and meltdowns. And as children grow older, they grow stronger—sometimes strong enough to overpower us. This is a life many of you aren’t aware of.
If you are a parent of a child on the spectrum, you experience firsthand the lack of awareness. It shows up in our communities, churches, doctor’s offices, stores, hospitals, schools—even among emergency responders. The looks. The stares. The head shakes. The comments. We see you. We hear you. We can only imagine what you’re thinking. The judgment we feel stems from a lack of awareness.
Take, for example, the Hersheypark incident where a boy climbed onto the closed monorail tracks. The moment I saw the video, I knew he wasn’t neurotypical. Neurotypical children usually have awareness to danger and would be fearful of being that high off the ground. This boy reacted to the crowd by walking away from the commotion, then stopped, covered his ears, and didn’t respond to shouted directions. A brave bystander climbed up and rescued him.
If you read the comments online, the judgment was overwhelming:
“Where were the parents?”
“They should be jailed for neglect.”
“Who lets their child wander off like that?”
What people don’t understand is how quickly elopement can happen. Even when you take every precaution—it still happens. It’s a parent’s worst nightmare.
Autism is not a superpower like many claim. Approximately 2 million children in the U.S. are on the spectrum. About a quarter of them have profound autism—meaning minimal or no functional speech, intellectual disability, and a need for 24/7 care.
It’s okay to celebrate individuality. But portraying autism as a superpower in most cases is simply not reality. It becomes a distraction—one that prevents honest conversations about root causes. And I don’t mean genetics.
But that’s a conversation for another day.
In recognition of last month’s Autism Awareness efforts, we’re sharing a powerful article written by Jessica — wife, mom to four amazing kids, and a dedicated PCIC Steering Committee member. Jessica is a fierce advocate for children’s health and parental rights, and her writing reflects both her lived experience and her unwavering commitment to helping families thrive. Her insight is a gift to our community. Learn more about Jessica’s advocacy on this podcast: www.americaoutloud.news/what-is-informed-consent/ or join her team at the Pennsylvania Capitol for a lobby day!