Tag: asd

No rapture, no epidemic

Good morning from St Paul. We are pleased to announce that the rapture did not happen. We are also pleased to announce that no one is eating the pets. Remember that? “They are eating the dogs. They are eating the cats. They are eating the pets.” That did not age very well, did it? Currently, I have 3 dogs at my feet, a cat on the back of my chair and a hedgehog happily running on her wheel. No one is in any danger of being consumed. So, let’s go over what is not going on. Tylenol does not cause autism, nor do vaccines. The idea of the rapture is made up by people who want you to be scared of your own shadow and a wrathful deity. Nope, I don’t believe it. What else don’t I believe? I don’t believe that autism is a pandemic.

When Ravi was diagnosed in 2002, the current belief was that 1 child out of 181 children would be diagnosed autistic. Over the course of his life, these numbers fell. When he passed, last fall, I believe that the numbers were 1 in 36. So, before you start clutching your pearls, let’s dive into this. In 2004 autism was seen as something that only affected little boys. You know the stereotype, the “little professors” the ones who lined their toys up in a row, the ones who knew the name of every dinosaur that ever walked this earth. Funny, Ravi did not do any of those things. True, he was non speaking and until he got glasses had terrible eye contact. (By the way, eye contact is seriously over rated.) A lot of the time, it seemed that he lived in his own little world. Gradually, over the course of his life he world expanded greatly and he lived and loved deeply. But, he could not have cared less about dinosaurs or the time tables of trains in the EU. The “professionals” also told us that autism was very rare in females and that clearly Ravi was the only one in the family who was affected.

Ravi was diagnosed after an 11 month wait. During that time I called, wrote, begged any doctor or therapist who would listen to please take a look at my son. Again and again I was told that I was just an overly anxious first time mom and that some delays were “normal” with preemies and boys just generally talked later than girls. The first break through was when some teachers from St Paul Schools came to assess Ravi in his home environment. He completely tuned them out and 10 minutes later they told me that he was on the spectrum, and we could start Early Childhood Special Education immediately. Validation! He started school the next week and loved it. 11 months later he was seen by a psychologist at Gillette Children’s who also diagnosed him as on the spectrum. There were no levels of autism then or talk of higher or lower support needs. Basically, she assessed him, gave us a write up of her observations, said he was clearly autistic, asked if he liked puppets (?) and sent us on our merry way. She did not suggest PT, OT, or speech. I had to dig for those services on my own.

Fast forward to 8 years ago. At the suggestion of a good friend, who is also autistic, I got myself evaluated. I too, discovered that I was on the spectrum. In a way, it was a relief. For 46 years I had felt like an alien dumped on planet Earth without a how-to manual. I always felt that there must have been some sort of class or seminar that everyone else took on how to be a human being, and a female, that I had just missed. I don’t pick up on social nuances. I don’t read faces well at all. I have terrible facial blindness, meaning that even if I know you well and bump into you someplace new or unexpected, I won’t recognize you. I can recognize people by the sound of their voice or their gait, but not their faces. Faces to me are a mystery. At this point, I am told I make decent eye contact. Fun fact, I am actually looking at your ear or your eyebrows. Eyes and expressions confuse me. I can either look you in the eye, or I can avert my eyes and truly listen to you. For the life of me, I can’t really do both. Two weeks after I was diagnosed, Mercury, age 14 was diagnosed autistic. Their autism manifests in high anxiety, perfectionism, a huge startle reflex, depression and anxiety. Both of us flew under the radar for years because we did well in school, were voracious readers, had huge vocabularies at a very young age and were not hyperactive or fixated on one particular subject. We both would do deep dives into things that interested us but quickly realized that the rest of the female pack was not interested in the last tsar of Russia, 6 wives of King Henry VIII or different kinds of sharks!

Fast forward to 2025. My friends who have babies tell me that pediatricians now begin autism screening at the 6 month checkup. No one has to ask for an assessment, they just happen. No one tells a mother of a little girl that autism doesn’t happen to females. Hello, Temple Grandin? For better or worse, there is also social media, which did not exist when my children were babies. There are autism moms and autism groups. There are people to bounce ideas off of if you are worried about your child’s development. There are online autism screening tests just for women. Soon after a friend recommended that I get an assessment I googled Autism in women. Pay dirt! I clicked nearly all of the boxes. For the first time in my life, all of my strange little quirks and mannerisms made sense. I wasn’t a bad person; I just saw the world from a different angle. It was a blessed relief.

So, that brings us to today. Voices in DC are screaming about autism, Tylenol, and vaccines. Using Tylenol during pregnancy will not cause autism. Autism was first diagnosed in 1911. Tylenol came on the market in 1955. Since that time, it is the only medicine a doctor will recommend to a pregnant woman. If a woman is pregnant and develops a fever, particularly in the first trimester, the fetus is at grave risk. Bringing the fever down will make mom feel better and the fetus is protected as well. Vaccines do not cause autism. They allow our children to grow up to be healthy adults without having to suffer through measles, mumps, rubella, chicken pox, polio, etc. All of these illnesses can be fatal, and even if the child lives, they will be miserable for weeks. Who wouldn’t want to spare their baby from that? The rates of autism are not “sky rocketing”. Assessments are getting better. Science is discovering that not just males, but females and particularly non-binary persons can be affected. This is not a pandemic. Pandemics are spread through germs. Autism is not spread. It cannot be caught. It cannot be cured because it does not need a cure. Autistics are not sick. They see the world through a different lens. Acceptance, accommodations, an equal playing field, better supports for those who age out of the system at 18, yes, all of these things are useful and highly necessary.

So, as I said in my last blog, let’s take a deep collective breath. Let’s stop clutching our pearls. The voices coming out of DC are just hot air. Kennedy does not even have a medical license. Why are we listening to a man who claims that he has a worm in his brain and a heroin addiction? The rapture did not happen. No one is going to eat your pets. Autism is a not an epidemic. This is not helpful. What would be helpful is to help those who have aged out of the system but cannot gain employment or acceptance. What would be helpful is knowing that all of our autistic brothers, sisters, and those who are non-binary are loved, accepted, challenged and allowed to feel that they have a place in society and that they have a voice. Rant over. Go touch grass, drink some cool water, walk your dog, get in touch with nature. I can’t promise that it will all be okay, but I can promise you and promise Ravi that I will never stop fighting anything autism related. Be good humans. Peace, Harriet.

It’s all about sex

So, today we are expected to believe that taking Tylenol during pregnancy causes autism. Really? Autism has been around since Noah lined his animals up two by two, probably by height and in alphabetical order as well, and put them on his ark. Autism has always existed. Tylenol entered the market in 1955. The use of Tylenol by pregnant women has remained about the same for the last 60 years. Have some women taken it? Sure, if they were battling a high fever and were truly miserable. Lots of women did not take it. I did not take anything but a multi-vitamin with folic acid while I was pregnant. Funny thing, both of my kids turned out to be autistic. I turned out to be autistic and so did Robert. When our mothers were expecting I know for a fact that they drank wine, ate tuna, and consumed brie cheese. My mom was a former smoker. Neither Robert nor I were harmed, though I would not recommend that pregnant women do these things. I firmly believe that autism is there in utero. I was autistic before I was born. Same for the rest of my family and anyone else who is on the spectrum. Autism does not need a cure because it is not an illness. It is simply another way of being, another way of seeing the world and interacting with it.

Vaccines do not cause autism. Vaccines save us from deadly diseases. I am an autism mom, and I vaccinate. I most certainly did not want to watch my children suffer or die from measles, mumps, rubella, or whooping cough. Because most parents took the vaccine schedules very seriously, we had a high herd immunity, protecting those who could not or would not get the shots for their children. Are their children who cannot get their immunizations? Yes definitely, which makes it of paramount importance that the rest of us make certain that our children do get their shots on time. When we vaccinate, we protect not only ourselves, but others in the world who may be immune compromised and are vulnerable. After a person goes through cancer treatments, they often have to retake their childhood vaccines again because they have been wiped out and have no immunity. While they are undergoing treatment it is up to the rest of us to protect them and keep them disease free.

Andrew Wakefield did terrible harm in the 1990s when he said that the MMR vaccine caused autism. He faked his data and later lost his medical license. But, he set the scene. Mothers were encouraged to believe that they “caused” their child’s autism when they were merely keeping their children safe and allowing them the chance to live to adulthood. Kennedy is also doing terrific harm. He is not a medical professional but is telling other doctors what to do and how to think. Autism is not an epidemic. You can’t spread it or catch it. The reason we see more cases of autism is the medical community has gotten much better at identifying it. When my offspring were babies there were not screening tests for autism at standard checkups. I knew from early on that something was very different about Ravi but had to yell and scream and stomp my feet to even get our pediatrician to refer us to someone who might help. Thankfully, he retired a few months later and we never missed him. My friends who currently have babies say that doctors start screening babies for autism at their 6-month checkup. If a child presents with red flags, they can get help before they even turn one. Intervention gives these children a chance at a happier, fuller life. This is not to say that early intervention is the only key to success, autistic individuals need support and accommodations throughout their lives, but that is a blog for another day.

So, if Tylenol and vaccines do not cause autism, what does? Sex! Autism can only happen if parents have sex. If Robert and I had never had sex, we would not have had autistic children. As it was, we very happily had sex and very happily produced two quirky, wonderful kids. We have no regrets.

I suggest that the world take a collective deep breath. Don’t believe everything coming out of Washington because it changes from day to day and becomes even more outrageous. Stop pointing fingers and digging up old studies that have already been debunked. Smile at your neighbor. Hold open the door for a stranger. Seek and work for peace. Ravi was a peace-loving young person. He would not understand the hate and vitriol that has grasped our nation. I will never find a cure for osteosarcoma, but autism advocacy is a hill I will die upon. There is no need for a cure because autism is not a disease. There is no need to make mothers feel guilty for taking a Tylenol while they were pregnant. There is a definite need to get rid of Kennedy and get an actual board-certified physician to take his place. 14 years of heroin use has done him no favors. There is not one cause of autism, there may be thousands. Someone once asked me if I could wave a magic wand, would I get rid of Ravi’s autism. The answer is a hard no. If I got rid of Ravi’s autism, I would also get rid of Ravi’s core, his very soul. I would have done anything to give him relief from epilepsy, but I would never have changed who he fundamentally was as a person. That would be like playing God. I am not a deity, just a parent fighting very hard for more acceptance and accommodations for those who are non neuro typical.

To say the least, the news of the day has upset me. I can’t control what comes out of Washington, but I can control what I believe is true. Autism can be hell hard, but it also can be beautiful. Ravi lived his life unapologetically. I loved him and Mercury with my entire heart. I would do anything to have them back in our lives. For them, for all of us in this autistic community, keep fighting to make the playing field equal and autism accepting. Ravi will be proud of you. Peace, be good humans.