This as-told-to essay is based on a conversation with Stephanie Guerrero. It has been edited for length and clarity.
I’ve never asked myself why my older son has autism. I didn’t ask why three years ago, when he was diagnosed, or before that, when he was a toddler struggling to meet developmental milestones.
I’ve always been a solutions-oriented person, so when I learned that my son had a developmental delay, I focused on what I could control.
I want my son to have the support he needs to be a thriving, contributing, independent member of society. I know that he can be that: he just might need a bit more hands-on support.
It was never important to me what caused his autism. After all, my son is here and I love him just as he is. Knowing what caused his condition isn’t going to change anything. He isn’t an item that I can return to the store.
Getting my son resources is a battle
I’ve been lucky to have wonderful resources and a community that has helped my son. But getting him what he needs is still a constant battle.
It’s 2025, but I’m still fighting insurance claims from 2023. That year, my family hit our out-of-pocket maximum of $3,000 before we even realized it. My husband and I kept paying our copays to some providers, which means we paid more than we should have.
Stephanie Guerrero’s son was diagnosed with autism when he was 3.
This year, we’ll easily spend $10,000 on therapies to help our son succeed. These treatments—including occupational, speech, behavioral, and mental health therapies—help him thrive, but they’re not a cure.
I feel like I’m always jumping through hoops
My son needs medical and academic support to thrive. But getting access to those services isn’t quick. We had to wait six months to see a neurologist and three months to see a speech therapist. I know other families who have waited a year for speech therapy.
I would rather lawmakers focus on accessibility to those services for all kids, rather than pinpointing a cause for autism.
Transportation to all these appointments is another huge barrier to getting autistic kids what they need. I would love to see the government (maybe with insurance companies) figure out how to provide transportation so parents don’t have to leave work constantly to get to every therapy appointment.
Let’s make it so that parents of autistic kids don’t have to jump through hoops to get their kids what they need.
We should invest in communities, too
We could also invest in communities. I’m lucky to have a fantastic local resource: The Center for Autism and Related Disorders (also known as CARD).
There, I can connect with other parents and learn what therapies have worked well for them, and what hasn’t. We can vent the frustrations and celebrate the joys of raising a child with autism.
Through CARD, I also teach other parents how to advocate, too. I’ve learned how to invoke the Americans with Disabilities Act, appeal insurance decisions, and write letters to my attorney general to get my son’s services. Yet I wish we didn’t have to fight so hard to get our kids what they need.
I worry about future insurance coverage
My deepest, darkest fear is that all the talk of a cause and a cure is masking a way for insurance companies to deny care to autistic kids. It makes me really sad to think that insurance companies could be off the hook for providing therapies and other treatments.
My son is a really cool kid. He loves Mario, ocean animals, and counting. He’s in a social community that helps him immensely, and he has adults in his life with the time and resources to fight for him. Those things will shape his life more than knowing what caused his autism.
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