Tag: neurodiversity

Autistic burnout/sensory overload

Dear Ravi,

It has been a heck of a week. Parts of it were really good, but parts of it were exhausting. I started my job and I love it. My client is bright, sweet, and we have the same offbeat sort of humor. I am working Monday through Thursday for her, about 25 hours a week. On Saturday, our Gather group had follow up interviews for the new position at church. Our group met from 8:30 to 12:30 Saturday morning. It was both exciting and exhausting. A final decision on the candidate will be made shortly. We had a wonderful Sunday school class yesterday. Could you hear us down the hall? We were making a joyful noise. Part way into the class, I was sitting on the floor with my kiddos. I stood up and my entire back went into spasms. It was hard to even take a breath. I have been having chronic back pain for the last month, but this took things to a whole new level. I moved onto a bench and spent time just trying to breathe. Luckily, none of the kiddos seemed to notice. Church followed class and it was amazing. I loved the music and Elizabeth’s sermon. I sat in the chancel with Roberta afterwards to listen to the organ postlude. I love a good postlude. Following this I went down to the chapel to just breathe, pray, and be with you. It is always good to be with you. Post church, Robert and I joined some dear friends for a late lunch and then I went home, took some meds for my back, and collapsed.

Ravi, this week took all of my spoons. It’s been a while since I have brushed up against autistic burnout and sensory overload. Let me describe how it feels for me, and I wonder if it felt this way for you. I am a cat packed into a human body. I like to bask in sunbeams. I like fidgets, toys, and small things that bring me pleasure. I like my meals to be consistent and in the same bowl every time. Noise, changes in my routine, random chaos are very upsetting and dysregulating to me. Imagine being an orange tabby cat. You are peacefully lying in a patch of sun and suddenly someone locks you in a room with a rambunctious toddler. The toddler pulls your ears and whiskers, pokes at your eyes, and chews on your tail. You like your fur to be flat, neat, and streamlined. The toddler has ruffled your fur backwards and now your tail is soggy. You are trying so hard not to use your teeth and claws, but it is a challenge. You scramble under the nearest piece of furniture and frantically try to smooth down you rumpled fur. You are shaking and scared. You can’t find your center. Ravi, this is what happens when my senses are flooded and I am going into burnout. The good news is that I know a lot more how to buffer myself than I did 10 years ago when I did not even know that I was autistic. I can usually gut it out until the end of the workday or the social scene and then fly home and hide under my favorite quilt. I only eat safe foods, and I work on rest and rehydration. I cuddle under a pile of pets and Nikki climbs on my chest, makes biscuits and purrs. Slowly, life comes back to center. Ravi, as you grew you got much better at self regulation. If something or someone made you uncomfortable, you just got up and walked out of the room. I always admired this quality in you. If you did not like someone or something, you just left. That is a huge asset and sign of growth, my love.

So, my son, this is a long-winded explanation of what it feels like to have my senses flooded. Did it feel this way for you? Was there anything I did that helped? Though I miss you desperately, I rejoice to know that you are in a place of perfect peace, and your nervous system is centered, calm, and happy. It is Thanksgiving week, and we are going off the grid for a bit, just for a sensory respite. We will look for cardinals. I will listen for the sound of your deep throaty chuckle, or your high-pitched cackle which emerged when you bumped up against something that was completely absurd. Daddy and I love you forever and always. Peace, Mom.

Treating autism is not witchcraft

Dear Ravi,

Newsflash, treating autism is not witchcraft and your phone is always listening to you. Last night Daddy was editing my book. He had a question about Leucovorin and when it had been given to you during your chemo treatments. We both remembered it was a rescue drug but could not remember after which type of chemo it was given. Anyway, he went off to a concert, and I went to bed. I rolled out of bed around 4am as sleep was eluding me and you and Mercury were ever present in my mind. I grabbed my phone to check the temperature. Instead of telling me the forecast it switched to LinkedIn and showed me the key word Leucovorin. Hmmm, sus. Nevertheless, I clicked on the link and promptly fell down a rabbit hole.

Let me try to explain, Leucovorin, also known as folinic acid, is a form of folate, or Vitamin B9. It is used primarily to counteract the toxic effects of certain chemotherapy drugs, including Methotrexate. It is essential for DNA synthesis, red cell production and overall cellular function. Methotrexate can inhabit folate metabolism. Okay, so far this sounds correct, but what on earth is the tie-in to autism? It seems, that in very rare cases, some people are born with CFD, or cerebral folate deficiency. This can lead to autistic like behaviors. The FDA is now suggesting that Leucovorin can be used to help mitigate some autistic behaviors. Hmmm, once again, sus. Ravi, you were seen by some of the best specialists in the Midwest. You underwent scores of tests, blood draws, MRIs, PET scans, etc., both for your autism and your osteosarcoma. Never once did we hear of Leucovorin until your first round of methotrexate in December of 2022. Generally, the methotrexate was given over 4 hours. As soon as the IV bag was empty the nurses would run another IV bag of Leucovorin. Then they would begin massively pushing IVs of saline to push as many of the toxins out of your system as possible. You underwent the Methotrexate protocol from December 2022 until April 2023, when your kidneys quit and you gained 35 pounds in water weight overnight. It was a horrific experience. Never once did Leucovorin make you less autistic, more verbal, etc. Never once did anyone on your team say that the Leucovorin could help mitigate his autistic behaviors. Never once. Turns out that it wasn’t so great for counteracting Methotrexate either. That was your last dose of Methotrexate forever.

I dug further down this bizarre rabbit hole. Who was suggesting the use of Leucovorin in autism? At first blush, it appeared that this was coming from the FDA. That was strange, so I dug deeper. Who is controlling the FDA currently? Trump and Kennedy. Of course! The same monsters who told pregnant moms that taking Tylenol would cause their babies to become autistic. The same monster who suggested using Ivermectin and bleach to combat Covid. Now the pieces were coming together. It was all another gigantic hoax, led make desperate parents of newly diagnosed autistic children believe that they were at fault for their child’s neurological differences and that this would be the magic bullet. Just another hoax, just another heartache for any parent who fell for it.

Ravi, my love, you were perfect as you were. I wanted to make life easier for you, but I never wanted to take away your autism, because then you would not be Ravi anymore. If someone took away my autism, I would not be Harriet anymore. Autism is hardwired into us. It effects how we see the world and react to it. It allows us to feel both great joy and great sorrow. I have been autistic for nearly 55 years. If that were to be taken away from me, I would not know myself. Ravi, if someone were to take autism away from you, I don’t know that I would recognize you, and that makes me very sad.

So, my dear, treating autism is not witchcraft and our phones are always listening to us. Had it not been for Daddy’s question last night, I doubt that I would have gone down this very peculiar rabbit hole. Recently, I was at a disabilities conference called Closing the Gap. I met many likeminded moms and tons of teachers and SLPs. We talked about inclusion, AACs, modification of the environment, and so many other things. Not once did I hear anything about Leucovorin, and this was a conference that brought together some of the brightest minds from around the country. We were not discussing witchcraft or herbal remedies. We were talking about closing the gap between those with who are considered “normal” and those who have differing abilities. We were not talking about magic bullets or an instant cure. Since January 20, everything that has come out of the Oval Office is a hoax or a scam. The Oval Office is trying to run the FDA and the CDC. Many of the best doctors and researchers have resigned, rather than do something they view as unethical and harmful.

Ravi, I miss you more than words can express. I miss you sheer joy at life and your flappy hands. I miss your love for Carboni’s pizza. I miss your goofy grin and your deep belly laugh. I would not change you for the world, but I would take away the epilepsy and the cancer. Autism fads will come and go. This too shall slink into the dark abyss of time. Someday, hopefully soon, someone new, kind, thoughtful, and caring will enter the Oval Office, and the FDA and CDC can get back to doing their critical work. For now, we will speak out as best that we can for those whom we love. Forever and always, Mom.

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.

Ravi Speaks

Dear Ravi,

I heard you loud and clear this morning. I went to the 10:30 service because I wanted music more than I wanted quiet meditation. I got that and more. There were two very animated toddlers at the service. I love the pitter patter of little feet during Joy’s sermon and squeals of joy from toddler lips. These sounds make the church feel so much more alive!

After the service, I had half an hour before our Sunday School orientation and meeting. I normally skip coffee hour because I don’t know that many people at the 10:30 service, and by nature, I am very shy. So, I slipped down to the chapel/columbarium to visit you. I checked in with you, cried a little bit, and was trying to determine what to do next. Suddenly, and clearly, I heard your voice in my mind. You said, “Mom, you need to hang out with the living, not among the dead.” I whipped around to see where this voice had come from, but you were gone as suddenly as you had come in. So, I blew you a kiss and headed upstairs. I got some coffee and then did see a few familiar faces. I happily chatted with people until it was time to go to the basement for our meeting.

The meeting was a success. There are 6 of us who want to be involved, plus Elizabeth. I agreed to help out every Sunday, except for marathon Sunday, when I have no way to get to the church. Also, this will set a rhythm for my week. I would much rather be with the youth of our church every Sunday, rather than once or twice a month. I have also been asked to be on the Gather steering committee. This group will design and run our Autism/sensory friendly Sundays once a month. I have yet to learn what my role in the committee will be, but I am very excited both the be a Sunday School teacher and on the Gather board. Sometime in the fall, I am also giving a talk about Autism and Autism advocacy at the adult forum.

Tuesday is your dad and my 24th wedding anniversary. Because you came a bit earlier than expected, we have never celebrated an anniversary without you. I don’t yet know what we are going to do, but you will be part of this day, just like you always have been. We will stop by the church to talk to you and let you know that you are still a beloved child of God and of our family.

This will be a busy week. I return to therapy on Monday after Kathy was out on medical leave for three weeks. I am helping a friend with some legal issues. On Wednesday I begin my work as a direct support provider. I am only working 2 shifts a week, for 9 hours each. This will hopefully make me feel useful, gain me some income, but also leave much time for other pursuits, such a writing advocacy, and running. I am running again, and it feels good, but I am very slow. Running provides a release for me and also helps me to feel close to you. So, thank you for reminding me of the outside world. I have a lot of work to do among the living, even while I honor the dead. How I wish that you were not part of the non-living world. I miss you, tons. This fall, the normally quiet basement of the church will fill up with the good noise of children. It may sound like happy chaos, but that is just what you loved. We are setting up the classroom to be sensory and autism friendly. I think you will approve. You are my first thought when I awake in the morning and my last thought as I fall asleep at night. Love you to the moon and back. Mom.