After 25 years of raising three autistic kids, I've stopped caring what we call April. I care what we do about it. It's time for Autism Action Month.
It's April. Which means it's Autism Awareness Month. Or Autism Acceptance Month. Depending on who you ask, the name alone can start a fight.
Every single year, the autism community spends the first week of April arguing about the same things. Is it awareness or acceptance? Puzzle piece or infinity symbol? Light it up blue or don't? And every year, I watch the same arguments play out while the things that actually matter get worse.
After 25 years of raising three autistic kids, here's where I've landed on this: I don't care what you call it. I care what you do about it.
Autism Awareness Isn't Enough - It Never Was
Let's be honest. The world is aware that autism exists. We've had decades of awareness campaigns, blue lights on buildings, celebrity endorsements, and hashtags. Awareness was necessary once. It served a purpose. It opened the door.
But that door has been open for a long time, and the people who need to walk through it are still standing outside waiting for help that isn't coming.
Awareness told the world autism exists. That's it. Awareness didn't fund therapy. Awareness didn't protect Medicaid. Awareness didn't stop the government from cutting autism research by 26%. Awareness didn't prevent the IACC from canceling its first meeting in over a year with no explanation. Awareness didn't keep families in Alabama from losing their children's therapy services overnight.
If awareness alone could fix things, we'd be in a very different place right now.
Autism Acceptance Matters - But It's Not Enough Either
I believe in acceptance. I believe autistic people deserve to be accepted exactly as they are. That's not a debate for me. But acceptance without action is just a nicer way of doing nothing.
You can accept my child all day long. You can change your profile picture, share a post, and tell me you support our family. But if you're not willing to fight for my child's right to therapy, to education, to equal access - then your acceptance doesn't pay the bills.
Acceptance is a mindset. It's an important one. But mindsets don't fund programs. Mindsets don't protect services. Mindsets don't show up at school board meetings or call representatives or vote for people who actually support disability services.
Acceptance needs legs. And those legs are called action.
What's Actually Happening to the Autism Community Right Now
While the autism community spends April arguing about what to call this month, here's what's happening in the real world:
Autism research has been cut by 26%. The federal government has slashed funding for the research that helps us understand and support autistic people.
The IACC canceled its meeting with no explanation. The Interagency Autism Coordinating Committee - the panel that's legally required to direct nearly $2 billion in autism funding - was supposed to meet for the first time in over a year. They canceled without saying why. That means $2 billion in autism funding is sitting without oversight or community input.
Families in Alabama lost therapy services overnight. Parents found out their children's ABA therapy was ending - not from an official notice - but from the therapist at their front door. Kids are already regressing. Waitlists for new providers are months or years long. Out of pocket, ABA therapy costs $150 to $200 an hour.
Medicaid is being gutted. 7.8 million people are projected to lose coverage under proposed cuts. For autistic individuals who depend on Medicaid for therapy, medication, and support services, this is an existential threat.
SNAP is being slashed. Families who already can't afford safe foods for their sensory-sensitive kids are about to have even less.
Disability programs are being flagged as DEI. Programs designed to support people with disabilities are being targeted and defunded under the banner of eliminating DEI initiatives.
States are ending paid family caregiving. Pandemic-era flexibility that allowed parents to get paid for caring for their own disabled children is being revoked, leaving families scrambling.
This is not a bad week. This is a pattern. And no amount of awareness or acceptance is going to change it.
Why I'm Calling This Autism Action Month
So I'm proposing something. It's time we stop calling this Autism Awareness Month. Stop calling this Autism Acceptance Month. And start calling it what it needs to be.
Autism Action Month.
Not because awareness and acceptance don't matter - they do. But because without action behind them, they're just words. And I'm tired of words.
What Autism Action Actually Looks Like
Action isn't complicated. It's just specific. Here's what it looks like:
Call your representative. Tell them to protect Medicaid. Tell them to fund special education. Tell them to restore autism research funding. You don't need a script. Just tell them your child depends on these services and you're paying attention to how they vote. Find your representative at house.gov or senate.gov.
Show up to a school board meeting. Special education funding decisions happen locally. If you're not in the room, someone else is making decisions about your child's future.
Vote like your child's future depends on it. Because it does. Research every candidate's position on disability services, Medicaid, and education funding before you cast a ballot.
Share resources with a newly diagnosed family. You remember what those first days felt like. The confusion. The fear. The isolation. Find a parent who's in that place right now and tell them what you wish someone had told you.
Ask the autism parent in your life what they actually need. Don't just tell them you understand. Ask them what would help. Maybe it's watching their kid for an hour. Maybe it's showing up to an IEP meeting with them. Maybe it's just listening without offering advice.
Hire autistic adults. If you're a business owner or a hiring manager, stop talking about inclusion and start practicing it. Autistic adults have skills, perspectives, and work ethics that strengthen organizations.
Make your business accessible. Sensory-friendly hours. Quiet spaces. Clear communication. Visual signage. These aren't expensive accommodations. They're basic respect.
Do one thing this month that actually makes a difference for an autistic person or an autism family. Just one thing. And then do another one next month. And the month after that. Because autism doesn't end in April - and neither should the action.
The Symbol Doesn't Matter If We're Not Doing the Work
You want to light it up blue? Great. Then call your representative and demand they fund special education.
You want to use the infinity symbol? Beautiful. Put it anywhere you want. Then fight for your child's right to equal access.
You'd rather call it acceptance instead of awareness? More power to you. Then show up to your next IEP meeting and make sure that acceptance turns into action.
The symbol doesn't matter if we're not doing the work behind it. The color doesn't matter if our kids are still losing services. The name of the month doesn't matter if nothing changes by the time May rolls around.
My Kids Didn't Need a Color - They Needed Supports
After 25 years, here's what I've learned. My kids didn't need a color. They needed therapies. They needed education. They needed Medicaid. They needed a community that showed up for them - not just in April - but every single month.
They needed people who were willing to fight, not just feel.
So here's what I'm asking for this April. Stop fighting each other. Start fighting together. Because the real threats to our community are not coming from inside our own house. They're coming from the people who are cutting our funding, denying our kids services, and calling our programs wasteful.
This month, I don't care what you call it. I care what you do about it.
Let's make this the April we stop debating and start demanding.
Rob Gorski is the founder of The Autism Dad, a platform dedicated to supporting autism families since 2009. He's a single dad to three autistic sons and has been featured on CNN, ABC, and BBC. His book, "So Your Child Has Just Been Diagnosed with Autism," will be published by Quarto in early 2027.
Sources
Autism research cut 26%: TIME
IACC meeting canceled: Disability Scoop
Alabama therapy disruption: WSFA News
Medicaid/SNAP cuts: CNBC
Disability programs flagged as DEI: Autism Society of America
Paid family caregiving ended: Disability Scoop
