No rest for the weary these days with all the distractions of a certain delusional narcissist who thinks we’ve all forgotten about the Epstein files. Maybe if I have a mild stroke they’ll forget..maybe if I screw with the 1st amendment they’ll forget…maybe if I poke a bunch of autistic people they’ll forget. 

I’m so done with this guy!

It honestly takes very little to piss me off these days and go back to bed, (although I have a good reason to stay in bed since I’m reading This hysterical book by Bruce Vilanch),  and finish at least one bottle of chardonnay. But our latest bout of verbal diarrhea by Trump and his sidekick RFK, Jr. has been unusually distracting. 

Let’s go in the Wayback machine all the way to the year 1999. It wasn’t all Teletubbies, Monica and Bill, and “The Phantom Menace”!  It was the year I realized that two of three kids had a congenital vision disorder and that they both were on the Autism Spectrum. My delightful son was an active, rambunctious, 2  year old boy and he had a LOT to say but unfortunately none of it was intelligible. He would make lots of vocalizations which didn’t sound like a toddler but like a Klingon. Considering he had a 7 year old sister who was almost totally echolalic (meaning she would repeat words and phrases that she had heard, usually on tv, and usually the most random unpredictable shit you could imagine like,  “Heast, no EAST” , “Rabbit! Piglet! Where are you “”W” yes, just the letter W,  and her sister’s favorite “you’re so cute, you’re so fat, you’re just like an elephant bat”. Since I was close to divorcing my husband, and only one of my kids actually communicated in a way that was EASY FOR ME, I was pretty bummed that my son wasn’t speaking the English language of which I am particularly fond. 

1999 was also the time of the (debunked) Wakefield paper that magically, using the power of lawsuits against the vaccine manufactures, (look it up, I don’t want to link to everything) convinced a fair amount of people that autism was linked to childhood vaccines. To hear anything definitive about autism created a feeding frenzy. It was flipping the crazy switch on autism moms like me. 

But honestly who could blame us? Chew on this: Because kids with autism very often have disruptive sleep, I often went days upon days with limited sleep. I know new parents go through this but try seven years of it, sister!  I’m lucky because I don’t hear well out of one ear so I can sleep through some screaming, my neighbors were not so lucky. My daughter screamed. A LOT. It was highly distressing for everyone in the home, in the neighborhood and anywhere we went in public. My daughter also ran. Right into trouble and so fast that you could barely take your eyes off of her to pee. Eventually we got the proper security features on her bedroom door and our home which means that the police only had to hunt her down for us three times! Usually one time is enough to have the police bring your 3 year old home in a car. Not only was my daughter a runner, so was my son.  He once ran ½ mile down the beach in Wildwood Crest, NJ to see the very first lifeguard chair. I chased him with a wine cooler in my hand and I never caught him but I could see his perfectly round blonde head running full speed and in and out of the surf.  He was so darn happy to find the 1st lifeguard chair that I didn’t even choke him. I could see how in some ways my autistic kids were alike and still so vastly different. The daughter would fight for her life if anyone dared tried to hurt her.  The boy barely noticed anything happening to him Hence (yes another boy story) the time he got what is called a bow fracture, meaning his bone was bent. His whole arm was curved. He felt no pain. That kid didn’t cry until he realized that his arm was stuck in a cast. He was using words by then so he just said “stuck” with his newly casted arm in the air. “STUCK”. Poor kid.

All of this running and not reacting to pain is SOOOOO autism. Like So Autism. As a parent, your mind jumps to all of the negatives. A high pain tolerance may sound good but I remember reading a statistic that autistic people die of appendicitis at a higher rate than neurotypicals, not so much because they don’t feel the pain but because they can’t convey it well enough. Or they could be experiencing pain displacement, also SA, where  pain is felt in a different place than where it should. I discovered this when bathing my three year old autistic daughter and finding a completely flush bee stinger in the ball of her foot. It’s no fun to see that and was never covered in What to Expect The First Year.  It was a very difficult few years. So when I had the chance to separate my son’s 3 year or 4 year MMR vaccine, I did it. Meaning the vaccine was given in 2 or three separate doses. 

You can still ask to have the MMR separated. You don’t even have to take it at all.  It’s not like you were ever forced to do, by the way. In fact you don’t have to do  ANYTHING to your child medically. In contrast there are some folks who are usually paying cash money to have all varieties of medical treatment imposed on their children.  I knew these kids parents who drove 2 hours away to get weekly pig hormone injections to “treat autism” —that’s fucking crazy—  but it’s kind of crazy to have a kid with a disability.  Most practitioners still want to treat the whole child. Although I’ve heard my share of shitty medical treatment with autism, I don’t believe that any practitioners go into work trying to make anyone’s life harder.  My pediatrician knew my family, he understood that I was throwing any non-invasive treatment at my kids. Delaying or separating an MMR vaccine was a pretty easy ask. 

If you’ve been around autism for the past few decades, you have seen the cures and treatments that seem to have sidetracked or managed autism symptoms. I’ve seen lots of mild improvements via diet, medications, occupational and physical, and yes, even some with speech therapies.  I’ve seen some improvement with operant conditioning techniques including some ABA. I think the real rub is the Discrete Trial Training (DTT) for those of you who don’t speak autism, ABA DTT is a much maligned therapy that was all the rage in from 1997-2018’ish. People have very strong opinions and these opinions are usually strong because they were themselves at the patient end of the ABA stick and feel that they were involved in what felt like (and kind of is) dog training, and I can totally understand why. But I think the real , real treatment problem was not just the pig hormones and the ABA it was the lack of value toward autistic people. Literally the lack of treating autistic people like actual people. 

When RFK talks “severe autism” he means a particular subset of high support needs people with autism.  I’ve met a lot of them, 70 year olds, too (BTW the 70 year old didn’t have the diagnosis but, sister,I assure you, I know the criteria well). Not only are these people overwhelmingly loved by caregivers, often poorly paid staff, their value is unquestionable. Secretary Kennedy is mocking the careful efforts of people everywhere who literally  wipe the butts of those who need help. They chop their food or carefully feed them with G-tubes (because lots of folks with autism tear up their guts with repeated bowel impactions and end up with a torn gut and need G-tubes –it’s a new and helpful treatment) and make sure that they don’t smell in WalMart because it’s SO important to others that everyone bathe. (Pet peeve of mine…let people stink occasionally. Having someone bathe your body has to be a sensory nightmare!) The Kennedy Family did a great disservice to their own Rosemary and , thankfully, many of the family have worked to rectify their shame by donating to organizations that help disabled people. But not RFK, Jr. He wants his grandfather’s bravery in seeking new treatments to help people with disabilities. Now, I know taking a little mineral supplement isn’t the same as getting the lobotomy that was Rosemary’s fate but the sentiment, the need to cure a problem is fundamentally wrong. As usual with this administration the problem is a moral one. As Zig Ziglar used to say, “How can you solve a problem that you can’t even see.?”

Also impossible to ignore is  President Trump’s comments on acetaminophen usage. (He only mentioned Tylenol because he obviously can’t pronounce acetaminophen.)  He stepped in it. BIGTIME. Maybe he’s never heard, but telling women that they caused autism is a very longstanding touchy subject.  Calling someone a Refrigerator Mom used to be a thing, too.  It’s not only disingenuous and wrong to blame autism on Women’s behavior, I’m angry that women are being told to “tough it out” while they’re in pain. Not even a “we really need to find ways to make childbirth easier for women”  or “I can’t even imagine” or something even a tiny bit self reflective, thinking about the words he is actually saying and how those words sound to anyone else, anyone but him.

I’m not surprised that they picked autism to pull into their arena. Autism parents are very vocal, ½ crazy, isolated from friends and family who don’t want a screaming kid at their kids’ birthday parties, and are sleep deprived. We are looking for answers, preferably easy ones that involve things we think we can control. And we are half autistic ourselves so we use computers a lot and know how to make donations. We are good people to have on your side. 

Here’s what I know, those pig hormone people left town to be near some fringy doctor who sucked their wallets dry. Most people I know on gluten free diets do feel better, still autistic but feeling better. That’s not nothing. And parents, being good at choosing battles may believe wholeheartedly what was being posited by Secretary Kennedy. Please be graceful to these people. They’re desperately in need of a vacation and no one likes to be around them. 

But if you’re buying this malarky, as one of you, I beg of you to ask an actual medical professional to assist you to treat your child. Whatever that treatment looks like. Treatments go in and out of favor, a lot like presidents! Stay with the one you can live with for a long, long time.