RFK Jr told the truth about autism, internet goes insane

I asked my nonspeaking son how he felt about Bobby's words...

WASHINGTON, District of Columbia—Bobby Kennedy’s press conference from yesterday has certain segments of the autism community in an uproar, with people incensed about the “dehumanizing” and “degrading” words Mr. Kennedy chose to describe the autism epidemic. Here are the words that set the Internet ablaze:

“…this is an individual tragedy as well, autism destroys families, and more importantly it destroys our greatest resource which is our children. These are children who should not be suffering like this. These are kids who many of them were fully functional and regressed because of some environmental exposure into autism when they were two years old. These are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted and we have to recognize we are doing this to our children and we need to put an end to it.”

we have an apples vs oranges problem

Our reality

The experience Bobby describes is my lived experience. My amazing son Jamie will always need assistance in his life. At times, his autism has been excruciating, most notably for him, but also for my wife and my two other kids. Jamie can’t speak. Self injury. Meltdowns. Despair. Frustration. Fixation. Inflexibility. Like millions of others, Jamie regressed. He was developing normally, until he wasn't. We’ve had more doctor visits, more emergencies, more tough moments in public than I could ever recount. This will always be our life. As our youngest heads off to college, Jamie remains bound and dependent on my wife and I, and he will always need people in his life to help him through.

In the simplest of terms, Jamie’s disability is profound and devastating. He’s been robbed of so many things. I don’t believe this was the path God had set for him.

Poor definitions are pitting us against each other

The Autism Science Foundation addressed the CDC’s data in a blog post on “profound autism” in 2023. They stated:

The Centers for Disease Control and Prevention (CDC) today reported 26.7 percent of people with autism spectrum disorder have profound autism. It is the first time this statistic has been reported using CDC-collected data and reflects a growing awareness that “profound autism” is different from the broader “autism spectrum disorder.”… Children with profound autism often require round-the-clock care to assist with daily living activities and to keep them safe from self-injurious behaviors, wandering, and seizures.

The next excerpt from the blog perfectly captured the disconnect I believe we are all seeing play out live after Bobby’s remarks:

“We need to know how many people have profound autism so that we can properly plan for their school and residential needs and improve the services they receive,” said Alison Singer, president of the Autism Science Foundation and co-author of the report. “Their needs are going to be very different than those of an autistic person graduating from Harvard Law School.”

I hope when you read that quote, you realize how absurd it really is. We have people with autism who need round the clock care and people with autism graduating from Harvard Law School? That doesn't make any sense, and here’s the problem:

The kid with seizures who can’t talk and will need a lifetime of care is not the same as the kid who talks, went to college, and has a job. We say they both have autism, and that’s simply ridiculous, because they have almost nothing in common. These definitions and the broad use of the word autism are dividing us. If the fully functioning adult on the internet has autism, then my son has something else. It’s apples vs oranges.

And, the kids with profound autism, THOSE WERE THE KIDS BOBBY WAS TALKING ABOUT. And, he needs to, because they are the ones who really need our help. And, they are also the ones who can’t speak for themselves and don’t have an X/Twitter account. And, while I’m at it, if you have that other kind of autism, the kind that allows you to be reading this right now, perhaps you can cut Bobby some slack and understand there are millions less fortunate than you for whom autism is exactly as Bobby described. And, by the way, the number of people Bobby was talking about is roughly 2 million Americans (26% of those with autism…)

Jamie responds

There was only one thing Bobby said that I disagree with, and that’s the part about never writing a poem, because many of you know that my son Jamie has learned how to spell, and it’s been a godsend for our family. Everything I wrote above about Jamie and how challenging autism has been for our family is true, but spelling has opened up a whole different avenue for Jamie to live a better and more productive life.

One more thing: Jamie spent his childhood in a school for kids with profound autism. He has seen so much suffering. Now that he can spell, we have learned how brutal it was for him to bear witness to his buddies struggling so mightily for all those years. Seizures in the hallway. Self-injury. Despair and frustration. He has seen profound autism on full display with dozens of kids who are his close friends.

Accordingly, you now get to hear from a 22-year old man, my beautiful son, who meets the definition of profound autism who sat here with me tonight and watched Bobby’s press conference, and here is what he said:

Q: Bobby has received tremendous grief for those words he just spoke about autism, what do you think of that?

A: that’s crazy he told the truth

Q: Do you find it degrading for him to describe autism that way?

A: not at all so many of my friends struggle so much

Q: Would you like to say anything to Bobby?

A: never stop treating autism like an emergency

Q: Anything else?

A: bobby speaks for me

Bobby speaks for my family, and millions like us. I hope people will stop shouting and start listening, and let the severe end of the autism spectrum be our focus, because they need us the most.

(BTW, it occurred with me while we were spelling that some haters would simply doubt Jamie spelled those words so I recorded him typing the final answer)

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About the author

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J.B. Handley is the proud father of a child with Autism. He spent his career in the private equity industry and received his undergraduate degree with honors from Stanford University. His first book, How to End the Autism Epidemic, was published in September 2018. The book has sold more than 75,000 copies, was an NPD Bookscan and Publisher’s Weekly Bestseller, broke the Top 40 on Amazon, and has more than 1,000 Five-star reviews. Mr. Handley and his nonspeaking son are also the authors of Underestimated: An Autism Miracle and co-produced the film SPELLERS, available now on YouTube.