Conversations, not words.
Let’s rip the bandaid off now.
The word “destroys” was too strong for the national stage. And in all fairness, RFK, Jr. clarified he was talking about the 25% with severe autism. Profound autism. The 1 in 4, possibly now 1 in 3, that have been pushed to the furthest margins of society, pushed out of medical research, autism studies, active participation in the community, even the autism spectrum itself.
“People with profound autism consistently experience unique, devastating, and often unseen challenges that require solutions, not only for them but for their caregivers. Research indicates that the proportion of studies that included those with profound autism has decreased significantly over time. Targeted advocacy increases access to critically needed supports and services for this marginalized population.” - Profound Autism Alliance
Nothing he said was new or novel. ALL autistics deserve every good-hearted piece of this lived experience coming to light.
I know families who care for children with profound autism. The first person I met as an ‘autism parent’ was a mom at a kids birthday party. My child was recently diagnosed, and another mom thought she would be helpful to introduce the ‘autism moms.’ She meant well I’m sure. But I'll never forget the weight this woman was carrying, arguably invisible, but clear as day. It was in her eyes, her skin, her shoulders, her entire self. She felt like she was seven feet tall, with a thick armor around her I didn’t dare cross. She barely made eye contact with me. This was not going to be your typical party intro. We were on sacred ground.
She says, without looking up "I placed my son in a group home today. We were living in the hospital. He became so self-injurious, we had no other option" and she walked on. There was nothing beyond 'can someone get this woman a chair, and some water' that would’ve been appropriate.
And all these years later, I refuse to let families in these extremely difficult realities be ignored, sidelined, or shamed. The stir Mr Kennedy’s comment caused only revealed how ignorant the general public is. And yet, I am reservedly thrilled this conversation has finally reached the national stage.
Because here’s what’s missing:
Autism doesn’t destroy families.
Societal barriers do.
Ignorance.
PITY.
SHAME.
The EXTREME normalization of autism as “just a different way of thinking.”
The TABOO around pushing for deep inquiry on potential causes, yes, including vaccines.
That’s what destroys us.
Or more precisely: systems that weren’t built to support autistic children, or the people who love them.
I applaud willingness to interrogate what’s contributing to the skyrocketing autism rates in this country. We need leaders who are brave enough to ask the questions others won’t. We also need leaders willing to look directly at what’s happening on the ground, not just in science or statistics, but in the lived reality of families.
And here’s one of the hardest truths:
Some of the most damaging narratives come from within the advocacy space itself.
We are watching systems bend toward “high-functioning” autistic individuals. Those with minimal support needs, who can speak for themselves, manage their lives, and often pass as neurotypical in many settings. THEIR VOICES MATTER. Yet when they become the only mainstream voice of autism, our children are erased.
The general public doesn’t understand autism enough to begin with. It’s either misery porn, quirky comedy, or a savant counting 246 toothpicks.
Autism is not ‘just a different way of thinking.’
For many families, it is a daily fight to access care, education, inclusion, and safety.
It’s cleaning feces off basement walls at 10 p.m. when you thought your child was just going to the bathroom.
It’s potty training at 19.
It’s stimming, hand-flapping, and screaming in public.
It’s going to see Santa at 7am on a Saturday, a half hour away, four weeks before Christmas, because that’s the only time and location that has “sensory friendly hours.”
It’s ripping your hair out because your child's sleep medication stopped working, and you have a high-stakes meeting with your boss in the morning.
It’s fighting to get the IEP team to understand you ARE the most valuable perspective at the table.
It’s having stickers on your car in case something happens to you—so police and passersby might respond with sensitivity, not fear.
It’s finding out which dentists, doctors, pediatricians, therapy clinics, stores, public places are consciously aware of the range of needs a family may have, and solutions or openness to solve them. While still taking your internal temperature before you leave the house, because despite all the planning, it might be one of those days.
It’s the quiet, guttural rage that bubbles up when you watch neurotypical kids laughing and playing, because your child has been left out again.
And it’s the spiritual cost of being gaslit for years by professionals, by systems, by the very narratives that pretend to advocate while erasing the truth.