A Better Way to Think About Autism

A few months ago, a man assigned to oversee the entire health department of the United States made a pretty awful assertion. In a press conference to the nation, he said, "autism destroys families." Now, as someone with autism, you can imagine my discomfort. Thankfully, I was already familiar with his well-documented habit of spouting dubious claims, or I'd probably have been distraught.

A statement from a person who holds such an office is inexcusable. His personal opinions aside, his position demands that he speak tactfully and courteously. Where was his sense of humanity? For heaven's sake, healthcare is about compassion. It reminded me of something that happened in 2009. Sixteen years ago, a major non-profit autism organization called Autism Speaks published a horrendous video titled I Am Autism. It was a short film in a villainous style with a repugnant message. And now that same message of hateful blame has been officially resurrected by the Secretary of Health and Human Services himself. Talk about appalling.

Some have defended his opinion because the stress of coping with a case of profound autism is genuinely significant. There's usually no let-up in these situations, and it's truly physically and mentally exhausting. I understand, and I sympathize. These families deserve all the resources we can give them, even if it means seeing our taxes foot the whole bill. After all, isn't that why we pay them? To enhance the collective good? (By the way, only about a quarter of us on the spectrum have profound autism, according to the CDC's report in 2023.) We need to be supplying these families with in-home care, family counseling, and the education they need on the disorder. Instead, the goal is often to find the cause so that a cure can be created or a way to prevent it entirely. While I support funding research to determine its cause, the target of eradication is unwise. At least not until we know more. And in the meantime, putting the blame categorically on innocent people makes things worse.

Again, healthcare = helping, not harming.

Some of us in the world do have feelings, you know.

Autism Spectrum Disorder (ASD) is a big spectrum with varying degrees of severity. On top of that, every person with the same "level" diagnosis—there are three levels to clarify the amount of support required—will share some challenges, but not all. The interesting thing is that sometimes these challenges are also benefits. Unlike a disease such as cancer, where no amount of it is good for the body, ASD isn't always bad. You see, it causes a person to think differently and sometimes provides new and valuable perspectives on the world's problems. It also means that for some, we'll have unusually good focus and can stay dedicated to a task without waning. And most fellow "ASDers" I meet have a genuine desire/compulsion to be honest. Of course, not all of us have the "cool" traits, and we won't all become giants in our fields like Bill Gates, Anthony Hopkins, Albert Einstein, and Sir Isaac Newton. Some of us will always remain in full-time care. But could we really risk taking away ASD entirely? I mean, my six-year-old nephew on the spectrum, just within his little circle of family and friends, lightens our lives in ways others can't because of his unique way of thinking and sense of humor. The lives around him would be noticeably diminished if his differences didn't exist. And we'd be robbed of the growth that comes from our willingness to develop a new mindset in order to help him on his journey.

Until we know how to separate the strengths from the challenges that come from ASD, let's focus on the individual issues, such as food. A restricted diet isn't healthy for the body, but it is also very hard on the mind. A varied diet isn't achievable for most of us on the spectrum, though. We are too acutely sensitive to textures, tastes, smells, and temperatures. And for whatever stupid reason, our brains have decided that having fewer likes is better. So, not only are we often missing out on healthy food options due to this tight and highly protected wall around our preferences, but we are also unable to eat spontaneously. And this second issue is much bigger than you might think.

Planning on being out of the house during lunch? Better be by an "approved" restaurant. And that restaurant better have the "approved" dish in stock. Taking your lunch with you? Better remain at precisely the same temperature you normally eat it at. Going to refill your supply of an "approved" item you eat? Better return to the store where you originally bought it. And if they don't have it, well, uh oh. Meltdowns even for adults over food really do happen. I can personally attest to this, but my meltdowns are internal, so others don't know I need help, which is super frustrating to say the least. Thankfully, many years with a skilled mental health team and an amazingly supportive, patient, and conscientious family have meant I no longer melt down quite like I used to. But when you ask me to eat your food and don't accept my polite "no, thank you," it's the equivalent of getting in my face and shouting at the top of your lungs, so I start shutting down inside. Seriously, people need to stop pushing food on others. For some of us, it's not annoying; it's a form of harassment.

So what could we do? Well, the gustatory cortex in our brain is responsible for taste. Let's invent a drug that would tell that part of the brain to relax and open its acceptance profiles. In other words, we force the brain to be open to more tastes and to forbid it from recoiling. Lots of meds tell the brain what to do. So why not another one? And then, when your child with ASD, who usually only eats Sara Lee white bread (just an example), is about to eat, you mix a little powder in their water before they drink, and now their brain has permitted itself to eat any bread, not just Sara Lee white. Perhaps it's not a powder, or maybe it comes in many forms depending on preference. Regardless, as soon as a pediatrician assesses that a child is struggling to eat a variety of things, the parents introduce the ritual of taking the med before meals at a young age. Doing this will help the child get used to eating all of these different foods and build up a tolerance for them so they can eventually eat them without the medicine. This tool would both alleviate and prevent a significant amount of stress for everyone involved.

Until such a medication exists, how about an app to track food availability? An app that allows you to type in all the foods you eat and their brand names, and it keeps a live track of which stores nearest to you have those items in stock. It would track your location so that, let's say, you're a parent on a field trip with your child, and they don't have enough of their desired snack, you look at the app and it tells you which store to head to. A project like this would require collaboration with stores nationwide. However, many chains already keep a live tally of their inventory on their website. Others keep it private, so we'd need to convince them to share that information with the app. And wouldn't they want to share it? After all, they might earn a sale if they're the nearest supplier of the desired goods. For families with more than one person/child with food preferences, it could keep track for all of them, and a parent could ask it to generate a list of the closest restaurants or stores that would meet everyone's requirements. This would come in handy when traveling, in particular. No more driving or walking around aimlessly, hoping to find somewhere you can eat together.

I do have other ideas on this subject, but my text is growing long, so I will save those for another time. Ultimately, when looking at our circumstances regarding autism, we must start by ensuring we have the best mindset.

While challenging, no matter the severity of the case, autism does not destroy families.

A lack of understanding of the disorder combined with a lack of support (family, financial, time, counseling, etc.) can pull a family into dangerous territory, though. Luckily, we can fix those things. To me, those are the things that Secretary Kennedy should tackle. He should be encouraging the scientific and technological communities to think creatively on the subject and perhaps pursue a few ideas like the two I shared. I reiterate my warning that we don't know enough about it yet to eliminate it. Something we could eradicate, though? Ignorant and hurtful claims.