u/KatelynsBrows

TLDR: NV, L3, 8yo boy - Unexplained extreme distress for months | SSRI activation syndrome? | Disciplining initial aggression

———————

My son is 8, Level 3, non-speaking w global developmental delay. He’s normally a happy, funny, affectionate little boy, but since mid-June, he’s been having multiple daily episodes of extreme distress, screaming and crying actual tears, sometimes for 12+ hours every day. Happens when he’s with others, alone, in a quiet room, in a noisy room, asleep, awake, in his favorite places, in places he dislikes. This behavior has no boundaries or obvious triggers.

This is the exact behavior he displayed last year for about a week before we realized he had several infected teeth and needed extensive dental work. The afternoon after his dental work, the screaming stopped completely and didn’t appear again until this June.

So, naturally, when this all started we assumed he was in pain again so we have spent the last 4 months trying to figure out what is going on. We have ruled out dental, been to many urgent cares, the ER at children’s hospital multiple times, seen specialists & neurologists, on and on. Bloodwork/scans looks normal. The consensus seemed to be he was having migraines so we started meds for that but it hasn’t really helped. We’re now questioning whether his small dose of sertraline could be the issue, like maybe it has made anything that’s normally slightly uncomfortable or irritating completely intolerable and extraordinarily painful - ex: a slight headache, stuffy nose, his sister talking too much, hunger, being tired. So we’ve been titrating down off that for the past week but he’s worse than ever 😔.

Today was possibly the worst day I’ve had so far as an autism parent. Even though he woke up at 2am the night before, he didn’t fall asleep until midnight, then woke up at 4:30am screaming and crying and jumping on his knees in extreme distress as usual. It’s heartbreaking because the entire time he’s screaming (which is hours a day), he’s desperately trying to figure out how to make himself feel better. He’ll ask for a specific movie on his AAC, watch 30 seconds, then ask for another, then another, then another, on and on. Same with foods. I want an apple, I want a peach, I want popcorn, every second through the crying and screaming. He takes a bite of each item and puts it down and asks for something else. For the past week he’s also obsessively asking to go in the car and drive around. It seems he is desperately trying to change something in his immediate environment in hopes that will stop whatever physical/emotional anguish he is in, but of course it doesnt help so it just goes on and on and on.

In the past 4 months he has also developed these intense OCD-like repetitive behaviors during the episodes. Rubbing the corners of his blanket against his face in a very specific way, repeating the exact same screaming/crying pattern over and over. Some of it looks like stimming, but he’s genuinely sobbing with tears running down his face.

He’s eating a lot less, can’t attend school consistently, and when he does go, he often screams the entire day. He’s absolutely miserable, and so is everyone around him.

This morning I was at my wits end. After a week of trying medications like advil, Sudafed, Allegra to see if they help (and sometimes they seem to, which is even more confusing), I just wanted to help him so much that I gave him 10mg of my propranolol (don’t come at me I told his psychiatrist), and when it kicked in 45 mins later it was like someone flipped a switch. He was back! Happy, relaxed, eating enormous amounts of food, watching Finding Nemo all the way through, enjoying his normal stimming activities (dropping confetti).

Unfortunately, about three hours later, he started deteriorating again. Propanalol lasts 3-6 hours so I waited it out, and after six hours, I gave him another dose like omg please let this work again. And it did, mildly for maybe an hour, but then the screaming/crying returned.

I took him for another drive because that’s one of the only things he consistently asks for this past week. We drive through the hills and listen to music and most of the time it helps him and he’s not crying. But then, somehow, the worst possible thing happened. I RAN OUT OF GAS for the first time ever in my entire life. We were driving up a mountain, and between all the screaming and crying and distress I didn’t hear or see the low fuel warning 😬.

I pulled over and tried to get him out to play in the grass while we waited for AAA, but he was hysterical. He just wanted me to get back in the driver’s seat and drive. I tried explaining 1000 times that we needed gas, even telling him the car needed to charge like his iPad, hoping that would make more sense. Then, as I stood next to his car seat, trying to comfort him, massaging his arms and legs, he actually hit me 😭. Like really hit me, right in the face. My glasses smashed into my nose and it hurt and made my nostrils sting. I completely lost it and started crying and I am NOT a cryer.

I’ve spent nearly four months, practically 24 hours a day, desperately trying to figure out what’s wrong with him and how to make him feel better. I’m exhausted beyond anything I can describe (we have a toddler too) and suddenly my sweet little boy was hitting me in the face. The anger surged through my veins and I had the immediate primal urge to hit him back (which feels very confusing), but I just grabbed his hands and said more sternly and shaken than I’d ever been, “NO! NO! WE DO NOT HIT! No! No! No! Bad!” Then I walked away to calm down.

AAA eventually arrived, and we made it home.
For the first time in all of this, I genuinely felt like I needed to get away from him for a little while. (Also I don’t want his sister to see me crying like that.) I went to my room, but he kept coming in, lying next to me, and just staring at me. A few times he reached over and touched my arm, like he was trying to reconnect. He’s not reliable with yes/no on his AAC so I don’t know if he was there just to get me to fulfill his requests or if he understood that he’d hurt me and that I was upset. (Ex I asked him do you understand we don’t hit, not ok, do not hit mommy and he goes NO 🙄), but he did seem unusually aware of my reaction today which was the only glimmer of hope I had today.

I know he’s not doing any of this to be difficult. I know he’s suffering. I know the hitting happened because he was completely overwhelmed and couldn’t understand why I couldn’t just drive the car to make him feel better.

So, I have 3 questions for parents of profoundly autistic children:

1. Has anyone experienced months of almost nonstop screaming and crying that seemed like pain, but you couldn’t identify the cause? Especially in a child who cannot verbally explain what’s wrong? Did you eventually figure it out? Was it medical, neurological, psychiatric, medication-related, or something else?

2. Has anyone experienced an extreme negative reaction to sertraline/zoloft/any SSRI?
   I’m especially interested in hearing from parents of Level 3, non-speaking children with significant intellectual or developmental disabilities, because so much of the usual parenting advice simply doesn’t apply to our kids.

3. What is the best way to respond when aggression first appears in kids like ours? | desperately don't want hitting to become an established behavior, especially as he gets bigger and stronger. How do you teach a child with protound autism and very limited receptive language that hitting is absolutely not acceptable, while also recognizing that he's in extreme distress?

I am completely horrified with s2c and the dumbest of the dumb telepathy tapes. I am trying to figure out what parents like me can actually do to help push back against this insane grift, both in-person and online. How can we work with SLPs and other people in the autism community to create a strong, factual counter-message that can actually compete with the misinformation that is being spread online because it is COMPLETELY OUT OF CONTROL

TLDR:
- Having a child with nonspeaking autism is incredibly difficult
- S2C offers parents immediate relief
- Emotional relief trumps facts (similar to vaccine misinfo)
- Social media is on FIRE with s2c content lately
- I see little to NO counterargument against it
- ASHA barely says anything
- It is very hard to tell people they are being lied to, stolen from and their child is not a prodigy
- What can we do to create a counterforce that parents will actually see, understand and believe?

Why I care: I am the mom of a profoundly autistic, nonspeaking 8-year-old, and even as someone who already knew profound loss and pain in my life before I had children, I was not prepared for how relentlessly heartbreaking this life would be. I love love LOVE my baby and the person he is, but the grief, fear and uncertainty surrounding his struggles shape every second of every day and will until I die. I am DESPERATE for a medical breakthrough, so I completely understand how and why some parents become fully gullible the moment someone tells them their child is actually totally fine, has complex opinions/thoughts/feelings and can/will tell you all of it now using his college-level English. Is all going to be ok, the nightmare is over

Basically, the crux of the s2c grift seems to be that in order for parents to avoid falling for it, they are required to evaluate & reject an extraordinary claim at exactly the moment that claim is offering them extraordinary emotional relief.

We see the tendencies in the current autism conversation more broadly as well, too. We now have large sections of the population and people in positions of enormous power championed for disregarding mountains of research proving conclusively that vaccines do not cause autism because not knowing why or how this happened is completely painful in itself. Anchoring yourself to vaccines causation gives you someone to be angry at, someone to blame and a way to fight back against them and get revenge (spreading anti vax info)

Also, as I understand it, once FC was debunked in the 90s and reputable media stopped covering it as legit, it faded away pretty quickly. Now we have fabulous FB, IG and TikTok, where a bs video can reach millions of people in a few seconds. Podcasts, influencers, parent testimonials and practitioners spread these stories at lightning speed, and I am seeing almost no meaningful pushback in the places where us parents, grandparents, caregivers the general population are actually encountering this stuff.

ASHA says these methods are not supported, yes, but you have to go looking for that information, and when you find it, it is dry, clinical and full of terminology that the average parent would not understand without stopping to look things up. It definitely does not scream, “🚨911 911 THIS IS A SCAM. DO NOT FALL FOR IT. READ HOW/WHY HERE!”

Are you as surprised/frustrated as I am that there is no bigger counterforce? Where are the TikToks explaining what authorship means in FC? Where are the IG reels with apraxia researchers and practitioners explaining what controlled testing is, what it means and why it matters? Where are the FB posts from angry parents with personal stories of being duped by s2c? Where is the fucking news? Primetime CBS Nightly News and 20/20 keep doing segments about s2c kids with NO research even mentioned let alone explained! Where is the accessible, shareable material that can actually compete with the emotional power of these incredible but false stories?

I suspect part of the answer is that a majority of people who this has touched are afraid to address this for the same reason I have trouble pushing back on other autism moms in person and online: because it feels incredibly cruel and awkward to look a hopeful parent in the eyes and tell them you believe they have been tricked, wasted time and money, and that the beautiful  language they believe is coming from their child is not actually be coming from their child. Nothing has changed. There is no relief in sight. The suffering will continue.

This is where I have absolutely no idea how to help. How do I tell another parent that the beautiful conversations they believe they are having with their child they are actually having with the s2c partner or worse, themselves?! How do I ask someone to consider that they may have spent tens of thousands of dollars and hundreds of hours on something that was not what they were told it was? How do I talk to someone who has already posted all of this publicly to family, friends and followers, knowing that changing their mind now may also mean admitting publicly that they were completely duped and never mind their child doesnt even know the alphabet after all

Right now anyone can find an entire online ecosystem telling them that experts are wrong, skeptics are cruel, schools underestimate autistic children, testing is inherently ableist, and anyone questioning S2C simply does not understand apraxia.

So I genuinely want to know what people like me can do. I am willing to speak publicly about this. I am willing to be a parent saying that I desperately wish this were true too, but sadly it is not and look - this is why. I am willing to help create and spread better information, and I am willing to be unpopular if I can somehow help other people from getting tricked into this. I just do not know what actually works.

The only idea I keep coming back to is a major public prize: put $5 million on the table for any S2C practitioner who can demonstrate independent authorship under properly blinded, independently designed conditions. Its not outright saying youre lying, its saying prove it scientifically and we will all celebrate! Parents would surely pay attention to that, right?

Arghhh