The View from a Drawbridge

Dear Secretary Kennedy,

As an autistic adult, I watched your April 16, 2025 press conference in its entirety. The HHS Secretary ought to be a medical expert, or at the very least have access to the greatest medical minds when crafting a health-related speech, so despite the fact that you have no medical education or training whatsoever, I was curious to hear what you had to say. 

You kept emphasizing several points in your speech that I found rather interesting. You were focused on what you called the “most severe cases” of autism. You described them as head banging, non-verbal children with a lack of toilet training,  who were prone to toe walking, stimming, and tactile and light sensitivities. 

First of all, no two autistic people are alike, and I can’t speak for all of us, but I fail to see why toe walking, stimming, and tactile and light sensitivities constitute a “profound impairment”. Those of us with those behaviors may not exactly fit in with the mainstream, but are we hurting anyone? No. Your personal discomfort (despite having a neurological disability yourself) does not raise the issue to DEFCON one.

While a certain percentage of us are non- verbal, we are discovering that some among that group can communicate quite intelligently in other ways. It just takes time to determine what way works best for each individual. 

I agree that head banging and a lack of toilet training must be a horrific challenge. The vast, vast majority of autistics do not have that challenge. In fact, more than half of us have IQ’s that are average to extremely high, and require only minimal support. By claiming otherwise, you do us a great disservice.

You assume that all the children being diagnosed with autism “will never pay taxes, never hold a job, never play baseball, never write a poem, never go out on a date, and never use a toilet unassisted.”

Shame on you for terrifying the parents of newly diagnosed children, Mr. Secretary. I have been working since I was 10 years old, and while I have not raked in as much money as you have, I suspect I’ve paid quite a bit more taxes than you ever will. And never play baseball? Well... I’ll have to give you that one. I don’t even like to watch baseball. So sue me. 

I’m married, but before that I had been on my fair share of dates, often with men of your generation. I can only thank my lucky stars that I never dated you, a man who spreads his lies and conspiracy theories about autism without giving a moments thought to the fact that he is setting legitimate autism research and understanding back 50 years.

I’ve written plenty of poems, and even more blog posts and articles. You are quite welcome to buy my book on Amazon. Do you read books? You've given me legitimate reasons to wonder. 
 
You took a well-researched study by the CDC (which of course took 2 years to complete because they wanted it to be scientifically accurate), and you countered it with studies from less reputable sources from 20 years ago. Would you want your physician to treat you based on knowledge obtained 20 years ago? Here’s hoping you don’t get cancer then, or you are doomed. 

You say that you’re going to follow the science, but you’re only willing to follow the "science" that props up your mistaken beliefs, and for that, you have to go back decades. I wouldn’t trust any study that you can trot out in less than a year. The fact that you’re proud to think you can produce such a study is rather concerning, especially since you've failed to reach out to any scientists with expertise in autism to ask them to participate. Not even the guy you tricked into sharing the podium with you.

You also say that you want to focus on the toxins of the 1980's, because that's when autism statistics sharply increased. You are dismissing the fact that diagnostics became more sophisticated, because you "know" it has to do with toxins, based on zero evidence. But let's entertain your notion for a moment. 

A lot was going on in the '80's, Mr. Secretary. That's when MTV came out. For a while there, people were blaming autism on MTV. Doesn't that sound stupid? Personal computers and cell phones were just gaining a foothold. You're not suggesting that we give those up, are you? The first GPS satellite system was introduced. Ban those, and your whack-job immigrant crony Musk will be apoplectic. Oooh, perhaps autism was caused by the Chernobyl disaster! Let's see you fix that one! 

Another thing that happened in the 80's was your felony conviction due to heroin possession. Maybe you caused autism! It could be argued that heroin is a toxin, and you certainly possessed it. But I'm getting as far into fantasy land as you have.

The portion of your speech that really made me gasp was about 18 minutes in, when you said that if the increase in autism statistics is due to better diagnostics, then “why aren’t we seeing it in older people? Why is it only happening in young people?”

Mr. Secretary, I was diagnosed at age 58. There are hundreds of thousands of adults in this country with a similar story. We flew under the radar our whole lives, being treated like we were weird and being ostracized and bullied, and needing support that just wasn't out there. Only now are all the puzzle pieces falling into place. There is nothing wrong with us. We’re just not like you. And while it’s nice to be more self-aware, it’s upsetting to mourn the life we could have had if only we had known sooner, and learned better coping skills, and hadn’t been treated to a lifetime of feeling broken.

And hold onto your severed whale head, sir, because this will come as a shock. I’m really happy that the autism statistics are increasing. It means that those numbers are more reflective of the reality in which we find ourselves. I'm sorry that that scares you so much, and that you view it as a tragedy and a crisis. It's actually good news. It means that fewer children with autism are falling through the cracks. Maybe they’ll get the help they need and deserve, and will go on to live much better lives than we older autistics did.

Autistic people are not family-destroying, financial drains on society. We’re not mutants who have been dosed with toxins, or soulless automatons who will never live full lives. While it would be satisfying to be able to blame someone or something for our affliction, in truth we aren't afflicted. We're just autistic. We may not all live the lives you would want to live, but the fact is, Mr. Secretary, you need autistic people. Without us, the very systems you use to spread your misinformation would not exist. Some of the world’s greatest achievements have been made by autistic people. We have a lot of strengths that you conveniently overlook to spread your panic.

Sure, it would be nice if there were a “cure” for autism so you could rest easy. The thing is, there is never going to be some magic pill that is going to remove the autism from our brains and turn us into the “normal” kids our parents looked forward to with such anticipation. It is cruel of you to make them hope that there will be such a cure. 

Believe me, my heart breaks for all of those on the spectrum with the most severe challenges. I don't mean to minimize their struggles. It's really unfair that they suffer so much. I often feel guilty that I am as fortunate as I am.  But even in those cases, giving false hope is cruel. It only causes parents to waste time that they could spend getting to know, understand, support and love the unique child that they actually have. All it does is make those parents give their children the impression that they are broken, and put them through a lot of draconian treatments that will change nothing. You would be much more valuable if you put away your insistence on treating us like some scourge that should cause people to run for the damned hills, and instead put the support services in place that these families need in order to help their children live their best lives. 

It’s been proven time and time and time again that autism has nothing to do with vaccines. And the “Autism Diet” has no basis in science. And has it ever occurred to you that the only reason autistic children appear to “digress” after age 2 is that all children younger than age 2 are only cognitively developed to a certain degree? Perhaps autism occurs in the part of the brain that develops after age 2. Common sense, man. 

Yes, I have my challenges. Yes, I have good days and bad days. Yes, I struggle in a society that thinks that I should conform to it rather than have it learn to understand , accept, and accommodate me. No, there are not many services for autistic adults who desperately need them, and now thanks to you, there probably won’t be in my lifetime. But despite all of that, even if you came up with some magical way to rewire my brain to make me somehow socially acceptable to you, I wouldn’t want that, because then I’d no longer be me. 

I am someone who is loyal and painfully honest and reliable. I am someone who thinks outside the box and am therefore able to solve problems in ways a neurotypical person would never dream of. I have a gigantic heart and it overflows with compassion. I am open to new and innovative, science-based ideas, and I have the critical thinking skills to debunk pseudoscientists with warped agendas.

And has your neurotypical life been that enviable? Your siblings have denounced you publicly. You'll forever be known as the guy who thought it was a brilliant idea to throw a dead bear into the back of his car. You chose to permanently damage your brain through the use of heroine and cocaine, and that's not indicative of someone who loves his life. If that’s the better life you're hoping to "cure" us for, then no thank you. You can keep it.

In closing, I have to say this: Moving forward, I will think of you every time I use the toilet, miraculously unassisted, as has been the case for the past 58 years.
 
Sincerely,

Barbara Abelhauser
Proud Autistic Adult