We live in a time of extremism, where people think in black and white terms and there is no middle ground for discussion.
For today’s “Daily Pages” entry, I ask that you open your mind and suspend your knee jerk reaction. Not everything has a hard line to it, especially what I am going to discuss.
In recent years, the autism rates in the United States have skyrocketed.
Many attribute this to an increase in diagnosis and awareness. I think this is true.
Many attribute this to environmental toxins or other issues that they found correlated with their child’s regression. These people are usually attacked by the higher functioning members of the community, or the parents of the children whose symptoms were present since birth. They are silenced, because it does feel very “refrigerator mother-y” to say that outside sources could have contributed to their child’s regression into a disorder that causes communication issues, sensory struggles, seizures, and more.
Rather than using language that is definitive, perhaps if we started using words like, “trigger” instead of “cause”, we could discuss why both things could be true: some people are born with more severe autism symptoms, and some people develop them.
To do this, we have to hush the louder voices from the higher functioning and newly diagnosed. Women with podcasts who have lived lives not far from the standard of “typical” should not and cannot speak for the ones who are still in diapers in their twenties and who have never spoken a single word. It does a disservice to those who have more needs to silence them, and their caregivers, from discussing their experiences and from looking for help to be shut up by the ones whose needs are significantly less.
Full disclosure here: I believe there are genetic factors at play. Many of my own son’s challenges mirror my own. By today’s standards of testing for autism spectrum disorder, I would be considered on the spectrum. I have dyslexia, ADHD, severe anxiety, sensory issues, and severely picky eating. I had PICA as a child. I’ve always struggled to maintain normal relationships because I don’t realize that people need constant reassurance we are friends, which causes people to think I’m mad at them…the list goes on and on.
However, when I compare my son’s experiences, since I’ve been with him since birth and have this gift/curse of extremely good memory and observation, I can see where our experiences differ. And in those differences, I have to wonder if certain environmental factors came into play into making his regression far worse than what would have been his “baseline for normal”. (That’s the term I am going to use, because I’m NOT saying he would not have autism. I’m trying to explain how two things can work at the same time: he would have his own standard of normal for him, which could involve ASD, and he could also have a more severe form of it because of certain things.)
The problem is, when we go to discuss this, as I will shortly, people immediately think the culprit will be vaccines. I do not think that is a single trigger. I don’t think anything is a single trigger. I think we are all humans, with different bodies and needs, and different life experiences. We will all have a different set of triggers that if applied could lead to something more severe, or for some, nothing at all.
For my son, he developed typically from birth until 26 months old.
But in those two years before his regression, he had a number of factors that put strain on his body:
A casein allergy present from birth.
Chronic ear infections.
Chronic strep infections. (He was never in daycare, there was no explanation for why he kept getting strep.)
Surgery with anesthesia.
Compound heterozygous MTHFR mutations. (We’d find this out later.)
Random weeklong low-grade fevers.
Almost constant antibiotic use. One time he was on three different antibiotics for weeks trying to knock an ear infection.
All of these things wreaked havoc on…his gut health. Diaper rashes that the skin would peel off, red skin, etc. Even though I was doing everything “natural”, I had no idea that the antibiotics, the soy-based formula, the Tylenol, the Advil, all of this was not good for his gut. But looking back, there’s nothing I could do about it with the knowledge I had at the time.
So, because of all of this, his vaccinations were on a delayed schedule at the request of his doctor. He would get one or two at a time, but because he kept having these infections, she wanted to go slow. This delayed his MMR vaccine until he turned two years old.
Don’t freak out. I’m not going to say it caused his autism.
But I am going to say, that it sent something already lurking in his system over the edge. And that’s what we need to discuss. ALL OF THESE THINGS lead to the week after that injection, he stopped talking. He slowly stopped responding to his name. He quit interacting. He quit taking his four-wheeler and bottle into the kitchen to ask for his milk. He stopped sitting with me while I did dishes. He started banging his head into walls. He started standing with his head on the ground all the time. He quit pointing. Over the course of about 6 months, he lost all of his skills. This coincided with us moving states and switching doctors, or else perhaps this would have been seen for what it was sooner. We were under the impression he was “working on new skills” so he was temporarily losing others. Or he was “so smart he didn’t need to talk”.
By the time he was three, we thought he was deaf, so we had a sedated hearing test which was fine. He was in speech therapy. He was in occupational therapy. I was paying hundreds of dollars a week to drive out of town to get 4 hours of ABA therapy, even though they said to be effective he needed 20-40 hours of it. He was lining up toys. He was completely in his own world and gone.
I was panicking. I couldn’t afford what he needed, I couldn’t help him on my own. I was having him watch sign language videos, but they weren’t working.
One day, randomly, I found a book in the library written by a mother from 1992. It discussed how her son had regressed like mine, and how she’d discovered it was due to his gut health, and she was able to help him.
My son was still having major stomach issues. He had gotten down to where he’d eat three foods: Goldfish crackers, chicken nuggets, and chocolate milk. I was ashamed we’d reached that point, as he had been such an excellent eater before his regression, but when you are overwhelmed with so many changes, and you have a child who isn’t just having a tantrum over something, he’s willing to injure himself to get it, you give in. So, after a scan through the book, and having NOTHING else helping, I checked it out.
It discussed trying the gluten, casein, soy free diet. I was under the impression his casein allergy was gone, and I was confused on why it would say to remove soy along with milk products, given we gave him soy formula for so long. It explained that the soy, casein, and gluten can have a morphine-like effect in people who are sensitive to them. This can cause them to crave those products, but they result in stomach pain and gut problems for those sensitive to it. Given he couldn’t communicate, this could have possibly been why he’d press his stomach into stuff and bang his head on the wall. Instead of sensory seeking, he was trying to deal with pain he couldn’t explain.
I was scared to try the diet, because I thought he’d starve to death. Honestly. But I started reading other books about it first and reading tips from other parents who had tried it online, and even though I wasn’t religious, I’d pray that someday I could get the child to eat a fried egg, because that would be easy to cook and simple on ingredients.
That’s where my emotional level was at the time: praying to a God I wasn’t sure existed to get my kid to eat a fried egg. The bar was on the floor.
We started the diet around the time he was four. We’d officially gotten our diagnosis at this point and were told his autism was, “rather severe” and that he would have a “difficult life”.
I didn’t have too hard of a time getting him to eat the new foods, as I found a replacement for his “big three” and had slowly intro’d them in the weeks before hand.
On the second day of the diet, he starts barfing.
We thought maybe he’d gotten a stomach bug. He threw up off and on for a few days, but we kept going with the diet.
A full week into it, he started singing. Not with words, but to a tune, and it’s something he hadn’t done since he was a baby.
Two weeks into it, he was watching his Signing Time with Alex and Leah videos, and he started using the signs. Within a month, he’d gotten about two hundred signs.
Then he started pointing again.
Then he started using single words again.
Then, one random day, he went to our chalkboard and drew a stick figure of a man and put little dashes across its head and he drew it on a cross. We weren’t religious. We didn’t go to church. He didn’t even watch Veggie Tales.
I asked, “Hey buddy, what is that?” because for one thing, he’d never drawn anything other than a scribble, and also, I spoke to him like a normal person as I read it was better to treat him like he knew what I was saying instead of dumbing it down.
He looked at me, pointed to the picture, and I poop you not, he said, “The angel. Jesus.”
I felt like I was on the right track. Over the next years, we’d try many interventions, many diets, many things. We got him to where he could speak well, though not conversational. Was he cured? No. He’s still autistic. Do I regret any of it?
The only thing I regret is how I didn’t speak up sooner about my experiences and the things that I found that helped out of fear of being attacked for trying something different. This life of parenting a child with special needs isn’t easy. There’s grief that comes with it. You see the child’s peers or siblings meet milestones they many never achieve. You see them getting bigger and the cuteness fading, and the people who were supportive when they were little leaving. You face disappointment when things you need can’t be accessed. You feel inadequate when you can’t provide. You feel guilty when you disagree with professionals. You feel rejection from the communities that should support you as you see them grow into something new over the years and leaving your more severely needs child behind. You want to talk with other mothers and fathers about things that you’ve tried or that have helped, but you can’t always discuss them because things like a simple diet change are now taboo.
And in your home life and marriage you struggle to be everything to everyone else and you can’t meet every single persons needs because you are pushed in so many directions. Your marriage struggles, because of finances and decisions and medical issues. You give your all to the neurotypical kids, and your all to the child, and you can’t give any more though you need too. Everyone processes grief differently, and while you dive in, your spouse might dive out. So many families separate because of having a child on the spectrum. We almost did. While I was trying to parent the kids, my husband was struggling with his own demons, and it almost broke us, but we made it out. I’m just being honest.
To divide the autism community like the way it has split is terrible. It’s already a hard life, on or off the spectrum. Parents, since the 1980s have seen their kids regressing and have been digging for answers. We shouldn’t shame people for trying to find help. Think about that person in the news who does something looney toons in an effort to help their child and then flip your thinking from “What an idiot!” to “Why is this person so desperate for help they’d try that?”
We need coverage for services. We shouldn’t be fighting insurance companies. We should be able to say, “This diet helped my kid, so let’s talk about it, but it might not help yours.” We can say vaccines save lives, and we shouldn’t be afraid of them, but also, sometimes, in certain people, they might need to be done in a different way. I have three kids, all vaccinated. I still got his boosters. Out of the three, my middle child did fine. My youngest reacted to some, and we went slower and one at a time. All was well. It does not have to be all or nothing.
And we need to remember the teenagers. The adults. The parents. The siblings. Just because they aren’t cute toddlers anymore, doesn’t mean the kid having a meltdown is bad or evil. They aren’t out to hurt anyone. Sometimes the child with autism has MORE empathy than the average person, but they look to others like they don’t care at all.
They say it takes a village. I think the world is our village, and we need to come together to love each other, to listen to each other, and to help each other. Profits, blogs, paid speakers, book deals…take the money out of autism, and help all the kids on the spectrum for free. Then we’ll really see change and help. Because right now, everyone is using each other to make money, and it’s only hurting kids.
Real, genuine, world changing help comes when we think about the humanity of each individual, the unique life experience of each single person, and we LISTEN to each other to hear and not to react. That creates change. I truly believe it.
And to close, my son’s favorite food is now fried eggs. God does answer prayers. lol
One in Thirty-One.
Nicheless Wonder 