By Rob Gorski | The Autism Dad | April 2026
I'm done with awareness. I'm done with acceptance. I'm done with understanding.
We need action.
I'm so tired of wasting 30 days in April trying to get the world to understand when we're wasting it. We're wasting it on bickering over stupid things. Colors. Symbols. Organizations. Terminology. We use up all the energy we have, all the bandwidth, all the attention the world is willing to give us on things that, at the end of the day, don't matter. Not in the big picture. Not for our kids. Not for the people in our community who are actively being targeted right now.
So I'm done.
The Problem with Just Talking
Let me be clear about what I mean. Awareness isn't bad. Understanding isn't bad. Acceptance isn't bad. In fact, they're all important. They're the foundation. They're the first steps. But that's all they are. Steps.
Awareness tells the world we exist. Understanding tells the world what our lives actually look like. Acceptance tells the world we belong. But without action behind any of those things, they're just words. They don't change policy. They don't fund services. They don't protect our kids from surveillance. They don't keep therapy in their lives or food on the table.
We spend so much time arguing about whether to call it awareness or acceptance that we forget the whole point. The point isn't the label. The point is what you DO.
And right now, the autism community isn't doing enough. Not because we don't care. Because we're stuck in a loop where we debate terminology while the ground shifts underneath us.
What the Autism Community Is Facing
Here's what's happening right now while we're fighting about whether to use a puzzle piece or an infinity symbol:
The IACC, the federal panel responsible for directing nearly $2 billion in autism funding, canceled its first meeting in over a year with no explanation
Families in Alabama had therapy services ripped away overnight
Medicaid and SNAP are being gutted, and disability programs are being flagged as DEI targets for cuts
The federal government tried to build a national autism registry to track autistic people using their most private health data
And we're arguing about colors.
I don't care about the color. I don't care about the symbol. I don't care what you call this month. As long as it's respectful and positive, you do you. What I care about is what you DO with it.
What Action Looks Like
You want a real example of action? Look at what just happened in Pennsylvania.
On April 16, 2026, Governor Josh Shapiro signed three executive orders protecting people with disabilities and autism. One of those orders directly blocks the state from sharing disability data with the federal government. It's a direct response to the autism registry concerns. According to the Philadelphia Inquirer, HHS requested the data from Pennsylvania last year and the state refused. This order formalizes that refusal.
Shapiro didn't issue a proclamation. He didn't light up a building blue. He didn't post a statement about awareness. He heard the concerns of the disability community and he did something concrete about it.
That's action.
He also created a new Governor's Advisory Commission on People with Disabilities made up of actual disabled people, family members, and advocates who will advise him directly on disability policy. That's action.
Tom Bak, a 26-year-old autistic musician who spoke at the signing, said he worries about being openly autistic in these times. The governor didn't just listen. He acted.
This is what every state should be doing. This is what every governor should be considering. This is what the autism community should be demanding from their elected officials, their school districts, their insurance companies, their employers, and yes, from each other.
What Action Looks Like for the Rest of Us
Not everyone can sign executive orders. But everyone can do something. Action doesn't have to be a big public gesture. It just has to be real.
Action is calling your representatives and asking them what they're doing to protect Medicaid and the disability services that depend on it.
Action is asking your governor what their state's position is on sharing disability data with the federal government.
Action is showing up to school board meetings when they're cutting special education funding.
Action is writing to your child's teacher about the IEP accommodations that aren't being followed.
Action is supporting autistic-led advocacy organizations like the Autistic Self Advocacy Network instead of organizations that center autism "cures."
Action is amplifying autistic voices, especially the ones who don't have a huge platform.
Action is having a hard conversation with a family member who makes dismissive comments about disability accommodations.
Action is believing autistic adults when they tell you what their lives were like and what they needed.
Action is sharing the stories that matter, donating to the families who need it, showing up for the families in your own community, and refusing to be silent when our kids are being targeted.
Action is choosing to DO something instead of just FEELING something.
Enough Talk
So here's what I'm going to be doing going forward. I'm done centering my content on awareness and acceptance. Not because they don't matter, but because they aren't enough. Our community needs more than words right now.
I'm going to keep talking about what's happening. I'm going to keep pointing to the leaders who are getting it right, like Governor Shapiro. I'm going to keep pushing everyone, including myself, to turn what we know into what we do.
You can celebrate this month however you want. Awareness Month. Acceptance Month. Understanding Month. Use the puzzle piece. Use the infinity symbol. Use whatever combination of ribbons and rainbows you want. I respect that. I'm not here to police anyone's choice.
But while you're doing whatever you're doing, I'm asking you to ask yourself one question. What am I actually doing? What concrete action am I taking this month, this week, today, to make things better for the autism community?
Because we don't need more words right now. We need more action.
Enough talk. Our kids deserve better.
Sources
Pennsylvania Governor's Office: Gov Shapiro Signs 3 New EOs for Pennsylvanians with Disabilities
Philadelphia Inquirer: Pennsylvania won't share autism data with the federal government
WHYY: Pa. sets new privacy protections for people with autism
Disability Scoop: Federal Autism Panel Cancels Meeting Without Explanation
WSFA: Autism therapy disruption leaves Alabama families scrambling
STAT News: No new autism registry, HHS says, contradicting NIH director's claim
Autistic Self Advocacy Network: autisticadvocacy.org
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.
