r/Autism_Parenting

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

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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?

My 12 year old autistic daughter has increasing anxiety, and also won’t leave the house without sunglasses and fedora at the moment. She also has a rather theatrical and vintage style. We tried starting with a therapist, and after 3 sessions, we talked about how my daughter had been bullied a lot recently, and the therapist said (with my daughter present), “well, when she dress up like that, it invites the attention and bullying”. I could see my daughters face fell, she didn’t say anything and she started fidgeting with buttoning up her jacket. Am I wrong for finding that offensive? I don’t feel good about having my daughter go to that therapist anymore and want to fire her from our schedule. A therapist blaming bullying on a vulnerable kid, rather than the actual bullies chosing to bully, seems not right to me. My daughter isn’t hurting anyone from the way she likes to dress. :/

Guess I just need to vent and decompress.
We’re just starting this journey with my 26-month-old son, and so far, I still cry every day. I grieve, my anxiety is through the roof, and I worry constantly about what his future will look like. I think about what would happen if both of us, his parents, were no longer here. We’re trying to stay positive through all of this, but it’s so hard. I’ve already had multiple breakdowns at work because I feel so trapped.

I work part-time as an RN, and taking care of patients adds even more to my mental load. Last night, I was taking care of a cancer patient who wanted me to stay in her room with her until her pain went away. I stayed with her the whole time, and when I finally walked out of her room, I felt like I couldn’t breathe and cried so hard. I felt so suffocated, and I realized that, in my personal life, I already feel so trapped.
I know she’s having one of the worst days of her life as a cancer patient, and I truly feel for her. But at the same time, I also feel like I’m not the right person to provide the emotional support she needs right now because my own boat is shrinking too. I’m barely keeping myself afloat.

I also unfollowed all the regular parenting subs here on Reddit and parenting profiles on Facebook and Instagram. Yes, I know I’m bitter as hell, but reading posts like, “My toddler just had a language explosion!” hurts so much when I’m over here dying to hear my son babble. It breaks my heart. I know comparison is a thief of joy and I feel so robbed.

My son also attends play school once a week, and I honestly haven’t felt like going these past few weeks. Man, it breaks my fucking heart every time I see his little buddies waving at each other and saying hi and hello to one another while my son is in the corner playing by himself.

FR, my son is already in speech therapy, and we’re waiting for his enrollment in Early Intervention. I’m grieving the life I imagined and looked forward to before having him. And I feel so guilty for feeling this way because he is truly the sweetest person on earth, and I know he loves me so much.
Damn. This is hard.

I just needed somewhere to vent. Thank you for listening.
Thank you for this sub for being my safe space.

Hey yall! This is my very first post here but I’ve been a long time lurker and reader. I have a sister whos about level 2-3 who is now currently 20 years old. She was diagnosed at maybe 18months old; firstly with global developmental delay, then autism spectrum disorder. I am on the spectrum myself, though level 1 and didn’t receive my diagnosis until 14.

My sister up until she was four and still beyond- would not walk, speak, or use the washroom. She would scoot around on her knees or bottom and would do a lot of vocal stimming. She was also a very physically sensitive kid and would cry at the drop of a hat. For a long time, it was very difficult to fully understand her or interpret her needs well. I know a lot of parents here have spoken about early professional intervention not making the difference it markets and I would agree for the most part. We live in Canada so services may be different in other countries? For a long time as a sibling I struggled to connect with her when we were younger. Now that she is older though, I couldn’t be more proud of her! I’ll list what she has achieved through years of hard work and patience:

Completed high school with a full diploma.

Has successfully made friends and kept in contact beyond school. The best part is that she and her friends connected completely organically at school in their special needs class over shared interests!

Has no issues using the washroom or showering now.

Is very tech savvy and can figure out niche online stuff way better than me.

Is artistic and has a passion for graphic design, visual arts, books, and video games.

Very emotionally perceptive and empathetic, surprisingly reads rooms quite well and somehow knows when somethings wrong even if nothing is said.

I’m so proud of her moral compass. That girl makes me so happy with how accepting and not judgemental she is of others.

She is one sarcastic lil fire cracker!

She is now one of my best friends.

She will live with me when I am stable enough to have her and I’m happy about that!

All these things are to encourage you guys not to give up when things look hopeless; remember, your child is half you and half your partner! Your child is yours before they are autistic which may seem strange but the most genuine sides of my sister only came out when we stopped focusing on her vs other kids her age and just focused on her as she is. I think comparison truly is the thief of joy and sometimes we can miss the cool little person in front of us looking at others. Your child is worth the battle, I promise💕

Kiddo will be 9 at the end of this month. He is nonverbal and very sensory seeking.
He eats SO. MUCH. Like he must never feel full so much.
Just like many other ASD kiddos, he has specific foods he likes, and would rather starve to death than eat other foods.
Because he eats so much we have had to stop keeping food in our home(not all food, just things he likes) because as soon as he knows it’s there he will eat the entire whatever it is… frozen or cooked does not matter to him.
We have tried locks on the fridge and freezer(something I was not proud of doing) and he just figured out the mechanisms and got in to them anyway…
So now here we are… he’s overweight, he’s gone from a very energetic child to one that would rather lay down on the ground at the park… and when we did bloodwork the other day, the tests showed the reality of these changes.
I had already been trying to prevent the continued habits, so I don’t know what else to do. He’s 9. He’s just a baby… I don’t know what I can do to help him be healthier if he won’t eat other things.

Hi everyone! I'm a dad raising an autistic child.

I wanted to connect with other parents who understand what everyday life can be like.

Some days are challenging, some days bring unexpected little wins, and I'm still learning along the way.

Looking forward to learning from other parents and sharing experiences here.

Has anyone had to continuously purchase the same things over and over and over again when it comes to their child?? These days it's already difficult to try and stay afloat with the way in which the economy is going, but it's even more difficult when you have a special needs child whom you constantly have to buy the same things for over and over. It's financially draining and emotionally exhausting. Even if you receive benefits, it's still difficult nonetheless. Between that, and constantly cleaning up pee and poop and feeding my son, I'm overwhelmed and it seems to be never ending.

I have never had to clean so much in my life until I had my son. He is not fully potty trained and is still unable to feed himself. Sighs. I work full time and it's so difficult to do anything. I see so many posts about people wanting more children and I say to myself I guess I'm the only one who refuses to do this to myself ever again, as I suppose it's easier when you have support. My son is level 3 and a thought about more children has never entered my mind. I have yet to clock in because my son had yet another accident and I've had to bathe him and clean up and just stand here and cry.

Should I get a stroller for my 8 year old? He's level 3, super active, and has a healthy weight, but he is hard to manage when I need to go into a store. He grabs everything, he runs and is really fast. I never go anywhere unless my husband is home with him, but everything closes when he gets off work. I just miss getting out 🙁 is there another solution I'm missing?

Level 3 non conversational 5yo daughter has been having a rough day today. Long story after a certain point I got overwhelmed and started crying. As usual, she showed no concern or reaction, which is very different than my older autistic child who is extremely empathetic. I’m wondering if this may change over time?

Just would like to start a forum for parents dealing with older teens adult autistic, there doesn't seem to be many out there ,it seems mostly for parents of young kids.I think it would be nice to have a safe place to come and vent and share a problem or just come with good news.

My son loves: The Hungry Caterpillar Game, Endless ABC, Duo ABC, and PBS Games. I’m open to checking out anything and my son specializes in numbers, fruit, pumpkins, and anything that spins lol

Thank you!

I know this probably sounds really selfish, and I know we should never compare our children to other children, but I’m only human and it happens. I didn’t realise how emotionally draining I would find it when my child started school.

I watch other children run out of the school doors shouting ‘Mummy!’ and throwing themselves into their parent’s arms, while mine walks out slowly, headphones on, barely looking at me. At the park after school, I watch the children from her class gravitate towards each other and play together, while mine is at the other end of the park, lying down and watching the spinning pads go round and round. And then there are the constant meetings and phone calls and conversations with school. A chat, an adjustment, a ‘just to let you know’, an incident, a meltdown, all while other children seem to be settling in, making friends and enjoying school, I’m becoming increasingly aware of just how hard it is for mine.

And I hate that I feel this way, I know she’s doing things at her own pace and I love her exactly as she is, but I am sad about it when I catch myself comparing her like this. Not because she’s autistic or because she’s different, and not because I want her to be like everyone else, but I’m sad because I can see that things are harder for her. Starting school is the first time I’ve really seen her alongside a whole group of children her age, every day. And that comparison is difficult, even when you know you shouldn’t compare.

I’m a late diagnosed autistic woman myself, so I understand some of the ways the world can feel when you experience it differently. I know that being different isn’t something that needs fixing. But I also know that being different can make some things genuinely harder, and whilst she has the diagnosis, support, and two parents who understand her, advocate for her and will do everything we can to make things easier for her, it’s still always going to be just that little bit harder.

I know she has her own joys, her own interests, her own way of connecting with the world and the people and things she loves, but right now I’m just sad because I love her so much, and sometimes loving your child means feeling the weight of the things you wish you could make easier for them.

My 8-year-old has been peeing much more frequently than usual. Could this be related to anxiety, or could there be another reason? Has anyone experienced something similar with their child?

Hello all

I am from the UK, my son is 10, august born, he is in middle school (yr5-8) and in a hub so a school within a school type affair with 8 other children of varying needs. He attends some lessons in the main school and some in the hub.

He despises school, he finds it boring (his word) and he struggles with the loudness, the other children, the teachers. The school itself is ok, they try but he is 1 of 8 in the hub and 30 in the class. The teachers are from my perspective trying to be very supportive and very accommodating to him and the others. The communication is good typically and what he says usually matches what the teachers say.

He is in year 6 so the focus is on English and Maths with a few other lessons including plenty of EHCP target time.

Got called into school today, he made little stick drawings of himself shooting his teacher and in the meeting was very angry still. Last week, Wednesday, was saying some horrific things to his TA (Teaching assistant that is 1:1 or at most 1:2 with him) he says this is from his imagination. Last week on Friday he also ran away from his teacher at the end of the day in furious tears because he was corrected about calling a teacher 'bruh'

His TA in his words destroyed a lego model that he spent a week working on, because it was the end of the week and because other children need to use the she didn't ask, he didn't consent it would have been ok if the other kids had done it because they would use it. He says she has ruined his life at school and that he holds a grudge against her (she supports him every Monday and Tuesday which makes going in on those days fun)

Today, he was disruptive in lessons he was expressing loudly his refusal to do a single question in maths. So got asked then told to go to the hub for his work space. I completely understand the need to allow the other children to learn. Instead of going to his safe space. He chose to find a big stick and hit the ground, leaves and the building with it.

We are on a waiting list for play therapy and local camhs support to explore options.

He has ADHD, ASC and ARFID some sensory processing challenges, language challenges and sleep challenges.

I don't know what me and his dad should do to support him best. He plays minecraft, chess, pokemon most often. His devices are very restricted and logged using Qustudio he does love bbc bitesize and horrible histories (which we talk about together) his favourite programme is Izzy's Koala world.

Away from school, the challenges tend to be about school, sunday nights that kind of thing. He is in a solid routine of food and day to day stuff. He is a boy that pretended he didn't have a dog when his friends dog passed just to make sure he didn't feel bad (we talked about that) a boy that was in flood of tears because a classmate didn't have parents who tell her they are proud of her. His devices are in the living room (PC and amazon fire kids tablet) and I watch his screen regularly so I feel confident at what he is accessing. No roblox, no youtube.

I feel I must be doing something wrong, that he is having these thoughts and expressing them so intensely that I must have missed something that means he is more exposed to this kind of thing than I thought.

Please may I have any thoughts, ideas or suggestions, no matter how common sense they might feel because I might have missed something I could be trying. For me consequences are preferred not punishment i.e. he drew on a desk so he had to help wash it off is an example for how I tend to be.

My son is level 2, minimally speaking, just started kindergarten last month. I love his teacher, he has a 1 on 1 aide, I feel very fortunate.

The same feedback at the end of everyday is “he says “mommy’s coming” non stop all day long. He has a visual schedule and they have printed a photo of me and put it at the end of the day and remind him I’m coming at the end of the day. It’s actually becoming more constant instead of slowing down as he settles into his new class

Does anyone have any advice or help with this? My heart breaks knowing he asks for me all day long. I know how he gets when he gets an idea in his head and it’s relentless. When it happens to me at home, I just repeat over and over and OVER when the activity that he’s excited for is happening.

Any help or suggestions if this happens to anyone else would be very much appreciated ❤️

My son is in an ESE classroom, public school. He’s in first grade now. He’s in the same class as he was last year, the only thing that changed were some of the students left the class. I just want to clarify that he had NO issues last school year.

This school year he has not wanted to leave the classroom for anything other than car rider time. I just had another IEP meeting where they asked me for a solution because it’s causing his teacher not to be able to have her breaks during recess, lunch, & specials. I have sent noise cancelling headphones with him, she has tried to use chocolate as an incentive(he loves chocolate). The school allowed me to come in during lunch yesterday to try to walk him there. It worked, I struggled a bit but I put the headphones on him and we walked. He ran back 2 times and I sternly said “no we are going to the cafeteria”. He ran inside and sat down. He sat there the whole 30 min with me. Today, his teacher tried and he refused to. The school is making it seem like an urgent matter, which I understand.. however, I have no idea how to get him to leave unless I’m there.

Some information that might be relevant:
His classroom has about 7-8 kids including him. The kids are extremely loud and the hour I was there they were nonstop talking, yelling, throwing food at each-other, etc. My son is an only child and what I noticed was he wants to be alone, even in the classroom. When I walked in, he was in the back corner alone playing on a fuzzy carpet. In the lunchroom, he sat alone with me. He doesn’t acknowledge the other kids, he just tries to avoid them. There is only 1 teacher, and a TA. I mean no disrespect to the kids, but I can understand someone like my son who has a lot sensory issues feeling extremely overwhelmed and not wanting to be around anyone.

Has anyone experienced this before? I asked for additional therapies but I got told “ma’am this is a public school.” I work from home but I cannot keep going in and doing this everyday. My husband works about 45 min away and we are barely getting by with bills. I don’t know what to do. I’m at a loss and the school seems like they are willing to have ME resolve these issues rather than trying to do it themselves. I just don’t know anymore and I’m really overwhelmed/stressed. Thank you for your time and input.

My 5 year old has always been one to cry easily . I thought by now he wouldn't be like that but he still is. I understand for reasons like if he say no to a snack or it's time to come inside or things like that. Other reasons i can't seem to understand why he cries. He is speech delayed so can't really tell me why.

Some reasons that seem random

i've said things like be careful, go with daddy

many times when we say single words (never the same words so don't think the words themselves are the trigger) literally can be as random as "tuna" or "cupcake"

when we talk to people or even if my husband and i are talking he starts to get fussy and cries if it continues. sometimes even us saying good afternoon to people outside and he starts crying .

we always say these things in a normal tone so not like we sound angry

what could be the issue with crying so easily and please tell me this gets better. i know it's just crying but everyday we are walking on egg shells cause we never know what is gonna trigger him. On top of all my stress it gets difficult especially when the reasons seem unclear and happen no matter how happy he is

My little boy is 2 years 4 months and is non-verbal. He has very little babbling and has never really gone through the typical “bababa/dadada/mamama” stage.

His understanding is good and he communicates really well non-verbally — pointing, signing, gestures, good eye contact and joint attention. He’s very social and engaged with us, but producing speech sounds seems incredibly difficult for him.

I’d really love to hear from parents whose child was similar at this age, particularly children who had little or no babbling as well as no words.
Did your child eventually start talking? If so, at what age, and did you ever find out what was causing the difficulty?

Positive stories especially welcome ❤️

I wondered if any parents of autistic children could share what their child was like at around 2–2.5 years old.

My little boy is 2 years 4 months and essentially non-verbal. He rarely babbles and communicates mainly through pointing, noises and signing. He did previously make a few animal sounds but stopped around 14 months.

I’ve never been sure about autism because socially he has lots of strengths — good eye contact, responds to his name, points to share things, has joint attention, waves/claps/signs, copies us, is very affectionate and understands most of what we say. He also does some pretend play.

However, he doesn’t really approach other children, struggles a lot with transitions and can have long meltdowns or “shutdowns” where he becomes floppy, withdrawn and doesn’t want comfort, sometimes for around 45 minutes. He also flaps his hands/runs and jumps when excited, has some sensory quirks and tends to focus most on cars, building towers and sorting colours.
He’s been referred to the Early Years specialist team because he’s non-verbal, so we’re getting professional input.

Did anyone’s autistic child have similarly strong eye contact, joint attention and social connection at this age? Does any of this sound familiar?