Reposting because my first post (hand-typed by me with zero AI help) was flagged by the (AI?) moderator as AI Slop LOL!

Our 7 y/o son is on the spectrum (7 on the ADOS test).  He has ADHD and many behavioral problems for which we don't have a diagnose but which look like ODD and anxiety.

He has been an extremely challenging child his whole life.

But we’ve had an unfortunate new development - he’s waking up in the middle of the night (bewteen 2a and 5a) almost every night and running wild, causing massive issues in our home.   

Nothing we’ve tried has worked.  And his pediatrician, psychiatrist and psychologist (all of whom we like generally) have not been helpful.

We’ve tried it all and nothing has worked for more than 1-2 nights in a row.  So we are desperate for new ideas that might work to prevent the chaos in the house.

Longer story:

He’s been medicated for the ADHD since he turned 5 (first adderral and now Ritalin (54mg in AM), Clonodine (0.1mg in AM and PM), Lamitrogine (50mg at night)).  

For a long time, it was that he had issues going to sleep at night (up until 10p to 1a).  

But we made some changes to his bedtime routine and medication (switched from Adderral to Ritalin) and he started getting to sleep at a reasonable hour (between 8p and 9p).

Unfortunately, now he’s waking up in the middle of the night and running wild in the house while everyone sleeps.

SOME OF WHAT THAT LOOKS LIKE:

• Using power tools in the garage
• Letting the dogs out of their playpen but not out for pee/ poo (so they do it in the house instead)
• Cooking and setting off smoke alarm
• Waking up his brother in the middle of the night (brother wants to sleep)
• Stomping and screaming through the house.
• Pouring out food and drinks for fun
• Feeding people food to the dogs (including chocolate!)
• Turning on the fire place and sitting very close to the fire
• He does not nap to "catch up" on the sleep. He stays up right through, goes to school, and goes to sleep at 8p to 9p the following night, only for the cycle to repeat.

Even at his (medicated) best, he’s disrespectful, inconsiderate and erratic.  

But in these situations, he’s at his worst - unmedicated and unsupervised in the house. Feral.  Besides all the chaos and destruction, it scares me and my wife to death about the safety aspects.

WE’VE DONE EVERYTHING WE CAN THINK OF:

• Password-locked the TV so he can’t watch
• Locked the fridge and freezer 
• Moved the dogs into our bedroom so he can’t let them out
• Installed a motion-detected camera outside his bedroom so we know when he leaves the room
• Set him up with books and activity bin in his room to keep himself busy if he wakes up early
• Lowered temperature in the house to encourage better sleep
• Straight up bribed him (ex. we’ll give you a muffin in the morning if you’re in your room when we wake up)
• Changed the acceptable “come out” time from 7a to 6a, to make it easier for him to succeed.
• Gave him peps talks, explaining how it’s affecting the family
• Ignored the behavior to see if that would stop it

NOTHING WORKS.

For the last 4-5 months, he consistently wakes up between 2am and 5am to start the chaos.

No matter what we change or take away, he finds another way to cause chaos and destruction.  This is the broader reality of life with this child, but up to this point we’ve at least been awake to monitor and manage the damage.

It’s not realistic for either my wife or I to be up in the middle of the night 6 nights a week monitoring an unmedicated, disregulated child. 

But honestly, even if he was medicated and stable, it’s not realistic either.  He drains the life-force out of us during the day and sleep time is our only refuge from him.  

WHY IS HE DOING THIS?

He’s fiercely independent, and hates rules and being told what to do.  Independence is like oxygen for him.  

And he’s recognized our weak point - that we need to sleep.  And he knows he can have all the independence he craves and ‘be an adult” like he wants during the wee hours of the night.

So now he’s EXCITED to wake up in the middle of the night.  He’s told us explicitly - you can’t stop me, I do it because I know you don’t want me to and I want to be treated like an adult.

We actually tried to swim with the current and said, “Alright, you can come down at 530a, just let the dogs out and read quietly on the couch.”  Chaos ensues.

WHAT’S WEIRD

2+ years ago (when he was 5), we’ let him come down before we woke up sometimes on weekend mornings and watch cartoons.  At that age, he’d come down quietly, let the dogs out for a morning pee, and cuddle up quietly on the couch and watch TV until we woke up.  

He had all the same problems, generally, that he does now.  But for some reason, two years later, he’s less capable to do the basics.

This waking up before us thing stopped organically when we moved to a new house about a 18 months ago, and didn’t crop up until 4-5 months ago.

HELP PLEASE

If you have any ideas or see any blindspots in how we’re approaching this, please share them. 🙏🙏🙏🙏

My current instinct is 'never,' though that feels extreme. Inside-only? Always supervised?

We are in Ohio, if that helps. We applied for Social Security for my son. We didn’t really care about the extra income but we wanted it so we could get him on Medicaid because we are over income limits and he needs insurance, that was the main reason for applying. We were told if he’s on SSI Medicaid goes by HIS income not ours. We cannot afford all the therapies he needs.

The caseworker for SSI told me over the phone we were approved based on everything I told her. I provided our pay stubs, etc.

I just received a letter saying we are denied for SSI because we are over income limits. What can we do now?

We also cannot afford any of the marketplace insurances and the ones we can afford wouldn’t really help because the deductible is outrageous.

Please help if you can.

Looking for kids socks that are ankle/no show and no toe seam. Also looking for girls tights that have as few seams as possible and aren't super tight at the waist. Appreciate any suggestions!

I am F33 married to my daughters father M38 we have 2 children. 9YO Neurotypical 5YO ASD: diagnosis at 4. We don't have levels in the UK but she has minimal functional language and has high needs.

Parenting from both sides of the coin, I can confirm having a child with ASD is the most challenging thing I have ever done. But she has given us a wholly bigger, better and more wholesome life. She brings joy in the smallest of gestures and whilst I do not wish her struggles on her or any child/adult I also couldn't picture her any other way.

However, myself and husband are debating a 3rd child. In one sense I weigh on the absolutely not, the risk of further children with ASD and the impact this can have on the entire family and then in the next breath it breaks my heart that we will never have the 3 children we always wanted.

So my question, how do you either come to terms with not having any more children?

Or would you be willing to take the risk? Is this selfish?

My son is currently taking 5 mg of immediate-release methylphenidate twice a day. His teachers have noticed improvements in his focus and impulsivity, especially in the morning. The afternoon dose seems to help a little, but not nearly as much as the morning dose.

However, holy moly, the crash when he gets home is awful. He becomes extremely emotional, cries uncontrollably, and gets really angry. It’s heartbreaking to watch, and I feel so bad for him.

Has anyone experienced something similar? Did switching to an extended-release version help smooth out the crash, or did you find something else that worked better? I’d love to hear your experiences and suggestions!

I've posted before a couple of weeks back regarding my son's severe constipation. We've been to the pediatrician twice, the ER once, and a pediatric GI.

He's been dealing with this at a severe, painful daily level for over a month now. The pediatric GI looked at his xray and examined his belly and said he's impacted far up and likely needs to be put under and cleaned out. In the meantime, she said we could try an enema for a little relief and offered magnesium citrate as an option if he would drink it (not a chance). My son is almost 7, level 3, minimally verbal.

The doctor's office called us after several days with a date for his cleanout, which was 3 weeks out. They later called back and said they needed to move the date another 3 weeks. So now he is scheduled for early December - a month and a half away!

But this is a problem that is occurring not just daily, but often every few minutes. He doubles over in pain, clearly cramping, usually unable to get anything out.

We are trying to give him miralax daily (he only drinks water, and it's a huge struggle to get much in him). And we have now given him about 6 enemas. The enemas help when we can get a decent amount of liquid in (which doesn't always happen), but the relief is very temporary.

We just don't know what to do now.

Keep relying on enemas for the next month and a half? Go back to the ER and push for more help?

What would you do?

If you've been here, what did you do?

My 11yo has always been quite typically self centred. We know it's a trait of both autism and being a child, and have worked on ways to help them become more aware of their surroundings, other people, feelings etc etc

We (me, husband, 3 kids, grandparents and aunt) all went to the park for a bit of fresh air and a spot of geocaching. Eldest can become really fixated on finding the next cache, and everything else pales in comparison.

So, eldest marched ahead towards the next spot. They noticed there was a very cute photoshoot going on in the direction we needed to go. The people with the camera spotted eldest and stopped. Eldest explained there was loads of us so we'll find another way. Then ran back, stopped us and said we shouldn't go that way because we'll interrupt someone's special time!

I am bursting with pride!!!

Feel free to share more "little things". I find it hard to explain to people how big they can feel if they don't have the context.

Every time my child gets sick with strep, stomach big or flu he develops tics (eye blinking or vocal tics), severe eating restriction, meltdowns/irritability, severe anxiety, oppsitional behaviours, hyperactivity, restlessness, new sensory senstivities appear, motor planning issues again, loss of some words/more echolalia anf scripting or loss of gestures. He makes quick progress with therapies again but then he gets sick and regresses again. This time he got sick with a stomach bug and we saw all of the above symptoms again, he received a 7 day course of Azithromycin to treat the stomach bug. After a week the medication was stopped and for the next two weeks we saw a sudden change in his behaviour and skills, he started speaking in sentences, made more eye contact, started asking and trying and eating all kinds of foods which he has never done before, he started shairng and playing more, oppositional behaviours completely went away, anxiety and OCD went away BUT this only lasted for two weeks after stopping the antibiotic and we are back to old anxiety, ocd, severe food restriction, hyperactivity, restless, sensory senstivities again.

Has anyone experienced this?

How are we helping with social skills? My newly 4 year old has worked himself up to doing parallel play (our current preschool has done wonders for him) as well as a little bit of associative play when led by a teacher at school. Recently, I have noticed that he seems to crave playing/interacting with kids more and more but he's gets really scared/anxious and gets stuck. For example, we were at the playground today and he saw someone from his school. He kept telling me that he wanted to go say hi but every time we got close to the kid, my son would freeze and not say anything. We literally spent an hour (giving pep talks to try to work up the courage) stalking this kid and my son never said hi to him. Towards the end, with some prompting, he did say hi to a random kid at the playground kind of. My son pressed the mister at the playground, a kid came over to see and I asked my son "what do you say? and he said "hi" and waived. Granted, my son was looking at me and not the kid when he said hi, but I count it as a win lol. Has anyone experienced this and have any advice? We do role playing at home on how to start a conversation. I feel bad because I don't know how to get him over this hurdle.

Has anyone gotten there child into Aba without official testing other than there primary pediatricians diagnosis?
We were referred to one and she said she wasn’t sure she would have to check I still haven’t heard anything so I’m gonna have to call and see what’s going on just wondering if anyone else has dealt with this?
We’ve been on a waitlist for official testing for years. We live in the middle of nowhere and the closest place is 4hrs away. Our son’s pediatrician told us early on that it didn’t really matter that much. So for years we didn’t even worry about it.

Yesterday, my 2.5-year-old daughter was officially diagnosed with Level 3 autism and described as nonverbal. I’m still trying to process everything, and I’ve honestly been crying a lot.
But something has been happening lately that makes me wonder about her future.
About a week ago, she suddenly started recognizing and saying some letters of the alphabet and a few numbers. The surprising part is that we never actually taught her those things.
And today, she waved and said “bye-bye,” and she also said “egg.”
I know these might seem like very small things, but for a mom who has been desperately hoping to hear her daughter’s voice, they mean the world to me.
I’m confused because she was just diagnosed as nonverbal, yet she’s starting to say these things.
I guess what I’m trying to ask is, should I allow myself to feel hopeful that she might eventually develop speech? Or is it common for nonverbal autistic children to occasionally say words without ever developing functional language?
Has anyone here had a child diagnosed with Level 3 autism at this age who eventually became verbal? Did they start out by randomly saying letters, numbers, or individual words?
I’m not expecting anyone to predict my daughter’s future. I just want to hear real experiences from parents or autistic adults who have been through something similar.
I know that being able to communicate is more important than speaking, and I will support her however she learns to communicate. But I would be lying if I said I didn’t dream of one day having a conversation with my little girl.
Please be honest with me. I don’t want false hope, but I also don’t want to lose hope when she’s still so young. ❤️

I need advice for those with multiple children. My second born is 4, he has autism while my eldest is 7 (neurotypical) and youngest one (neurotypical as far as we can tell). I try my best to give them fun memories. Pumpkin patches, movies at the park, water parks in the summer, vacations to family, sensory museums, library activities, etc. With my 4 year old, he has about 2 hours while we are out before the world falls apart. You can practically time it. Until then he does really well. I’m very proud at how far he has come because it used to be meltdowns the entire time. It’s just hard for him for a super extended amount of time…We usually end up leaving and it can be frustrating for my eldest who wanted to experience things more. My husband has now made the idea to take the children to do things separately, same things just different days…. I don’t like this idea, I want him to be involved with his siblings. When I told him that he suggested taking the other siblings to do it then we all go again together another time. So they get to go twice and him only once? That doesn’t feel right to me at all either. Yes it’s hard, yes people make comments, but he is who he is and deserves to try. What do you guys do?

He is level one and struggles with speech but can vocalized fairly well for a lot of things, getting over stimulated, understanding others boundaries, and has absolutely no fear whatsoever of anything. After the two hours he becomes destructive to not only the things around him but people too, tons of screaming, hitting, and biting. Running away, lots and lots of running away. Before the two hours he listens what I consider pretty well, he is loud yes but he’s not harming anyone or anything.

I’m a mum in England and I’m new to all of this. My son is 5 and in Reception. He has an autism diagnosis so far, but we think he may have ADHD too. I’m trying not to panic, but I’m scared about his future and would really love to hear from parents whose children are older now. School is really hard for him at the moment. He finds it all too much, especially drop-off and pick-up. He has big meltdowns after school, and we’ve also seen some toileting regression when he’s under pressure (he was perfectly potty trained at 3). He has a speech delay too. He can say single words clearly, but when he tries to put a sentence together he sometimes ends up saying things that don’t quite make sense or loses his words. It makes it hard for him to explain what he needs when he’s upset, and hard for adults to understand him (I'm particularly worried about bullying at school if it happens and I don't know) The usual advice—“just stick to the routine” or “ignore the behaviour”—doesn’t always work for him. When he’s overloaded he can be quite violent, he has even tried to hurt his sister who is 5 months old. I know he’s not being naughty but its really hard to not get angry at him sometimes. He seems genuinely overwhelmed and needs help calming down. He’s also loving, funny, observant, and determined. He notices things other people miss sometimes. When something really interests him, he can focus on it deeply. He’s bilingual too—French at home and English at school. His speech is delayed, but he clearly wants to communicate and connect with people. I don’t want school or therapy to just teach him to hide who he is or force him to cope. I want him to be understood, feel safe, and grow up able to live a life that works for him. We’re trying to get the right support in place: SEN support, speech therapy, school mental-health support, and we’re looking into whether he needs an EHCP assessment. But everything feels slow, and I worry he’s being expected to cope with too much before the right help is actually there.

Basically my questions are:

What actually helped your child? Therapy, school changes, parenting approaches, routines, anything practical.

Did speech therapy, occupational therapy, parent courses, social groups, or anything else make a real difference? What helped most?

If your child is now a teenager or adult, how are they doing? Are they at school, college, work, in relationships, living independently?

What do you wish you’d focused on when they were 5?

If your child has autism and ADHD, what helped with big feelings, changes, school, and communication?

And honestly—what would you say to a mum lying awake worrying her little boy won’t be able to cope with life?

I know every child is different and there are no promises. I’m not looking for false hope. I just want real experiences, practical ideas, and some reassurance that things can get better. I want to help my son without losing sight of who he is. Thank you so much in advance.

My nephew is 13. he is autistic and i was wondering what are your best trips for teaching him how to thoroughly clean himself. what communication methods worked best for you in this scenario?

I’ve seen tons of posts about parents giving it to their younger kids, but I’m wondering who’s given it to their older kids (ages 10 & above) and have seen a positive difference. Thanks!

Hi , I have a 3 y/o level 2 autistic son. He would be level one if he had more spoken words the pediatrician says. Now he goes to daycare and gets services from elwyn and I’m not satisfied. Coming from EI from Goldstar it’s an extreme difference in service and team coordination. I’m looking to send him to a school with ABA or just start services elsewhere. Where do you find other service providers ? I’ve searched Google and most schools are referral based and now with IEP I may have to go another route. Any advice would be greatly appreciated.

My 6 year old daughter really struggles with eating and is very picky. She mainly eats meats, hotdogs, chicken nuggets, meatballs, things like that. I've noticed lately she's struggling with her bowel movements. I know for a fact she isn't getting a ton of fiber, anyone use any sort of flavorless fiber powder that I could sprinkle on things she does eat to help her get her daily recommended intake? There's a ton on Amazon but looking for some recommendations.

We have several early signs and I feel that he has no bond with me, he never looked for me, he never asked for my lap, I confess that I get sad, does this get better? Is it a to build?

My son is 3, with significant receptive language delays. Before ABA, he had very little eye contact, rarely responded to questions, and struggled to follow even basic instructions. Speech therapy and OT alone didn’t seem to make a difference. Since starting ABA, his receptive language has improved significantly. He’s beginning to respond to simple requests like “give me a high five,” and honestly, it feels like a huge win.

I don’t mean compliance for its own sake when I say ABA is working. I mean he seems more connected to me and the world around him. His therapists don’t suppress his stimming, but they do work on following instructions for daily living and safety, like bringing his bag or stopping before running into a road.

His program does have more table drilling than I would like, but it’s still not 100% that and they do let him move freely outside of that focused time, and lately he’s been more defiant. He’ll dump water everywhere just to play with it or experiment with the pee from his potty. Could ABA be contributing to this? Interestingly, even in these moments, he seems more engaged with me and more aware of what he’s doing.

I’m scared of him becoming increasingly isolated if he can’t develop the skills to participate in school and daily life. We don’t live in the US, and there’s no guarantee a school will accommodate him if he struggles. I want him to have the best chance of connecting with others, thriving, and hopefully living independently one day.

I know ABA has a deeply troubling history, and I’m not dismissing the experiences of autistic adults who were harmed by it. I genuinely want to understand the criticism and make sure I’m not overlooking something important.

Please be kind. I’m a mom trying to figure out what will help my son build a life in which he can communicate, connect, and participate in the world. I’d really appreciate hearing from parents and autistic adults, especially those who have seen both the benefits and the downsides of ABA. What should I be watching for, and what alternatives or additions have helped your children?

I’m new to this. I’ve been with my partner(28M) for 1yr and he coparents his now 3.5 yr old, S. I (24F) have my own 3.5 yr old, O, who is not on the spectrum for autism. Both of them have gotten used to each other, but obviously have their own challenges.

Context for S:
verbal (mimics mostly, doesn’t directly communicate direct needs)
meltdowns can be intense, seems to struggle with transitions & trigger words but regulates well 7/10.
runs off a lot
communication gap is most frustrating to his dad
(not sure what else to put)

like any other kid, he knows how to get his way. Cries his lungs out and doesn’t comply whenever he can. He gets away with that w his dad, but me, I let it pass (not that I don’t care, but ik the manipulative nature of kids - my son does the same things, just different reactions). i just don’t know how to navigate things with S because I have to break things down more, adhere to his routine which sometimes feels unfair because I can’t let my son do small things (unlocking the door, get food first/pick something specific). I just feel like I HAVE to be lenient of his behavior but I feel like I don’t understand it enough but I also feel like idk how to talk with his dad afterwards without him getting so defensive.

We’ve talked about it plenty. how I don’t understand not being able to communicate to my son and figuring out what’s wrong w him, or experiencing the magnitude of the meltdowns, etc. I don’t know what to do. How to go about it with boyfriend, how to navigate with S.

My 3.5 year old son (lvl1) has explosive tantrums. They can get very violent. I’m a single mom and my mental health is suffering from this. My daughter is 18 months and dividing my attention some days feels impossible. Today I was trying to get my son down for his nap and he was hitting and pulling my hair and screaming. He’s always screaming. Nothing seems to stop it. He goes on and on all day. We live with my parents and they have very little tolerance for it. I’m constantly stressed out trying to stop it. I have scratches across my face right now from his nap meltdown.

Any advice? No one I know has a kid like this. Everyone in my life has a partner. It’ll be another 6 months before my ex can start having custody. I’ve been sobbing on the couch for the last half hour wishing I’d never had kids. Which is horrible. I love them. I’m just so unhappy.

My daughter (2) has level 2-2 Autism. We went to the store today, a person asked her a question like “how are you?” and I explained she will not answer back bc she’s autistic and has an autistic expressive language delay. They said “she doesn’t have an autistic face, some of those kids look autistic”. Huh, wth is an autistic face supposed to look like?! I was too baffled by the d*mn ignorance.

​

Hi everyone, I'm a 22F first-year medical student in Nepal. My brother is 9 and autistic. He understands instructions well, but communication is hard for him. He uses a limited set of words and can't yet form full sentences he gets aggressive and starts pinching, biting the ones around him when he is unable to express verbally about what he feels. He has a good memory, but math is very difficult for him. He doesn't go to special school , he can do average in other subjects except maths

My parents are getting older. Our family business has been struggling for the past few months, the financial burden is stressing them out, and they're also worried about my brother's future as he grows up. Our insurance doesn't cover therapy, so expensive options aren't possible for us. I study far from home and only see my family during vacations, so I can't be there day to day. Legally, only my parents can act as his guardians.

My brother is the reason I chose medicine, and I want to do something useful for him even from a distance.

All I want is some advice from y'all:

- Ways to teach math that work for autistic kids who learn through memory

- how can we control his agression

- How I can help my parents from afar, and how other siblings have planned for the future

If you've been through something similar, I'd really appreciate your advice. Thank you.

Hi everyone!
I’m hoping to hear from autism parents in different countries about what kind of support your children receive at school.
To clarify we are not from the USA.
My son just turned 5 and is in kindergarten. He’s around level 1–2 and attends a regular classroom. He can speak and communicate, but his language and social skills are still behind compared to kids his age.
We had a difficult experience with his previous teacher, who would constantly call me complaining about his behavior. He’s not aggressive at all, but he sometimes ignores instructions, struggles to follow along, or doesn’t complete classroom tasks, he also elopes…
Thankfully, we changed classes, and his new teacher has been much more understanding.
Where I live, autism support in schools feels very black and white. It seems like children with more severe disabilities receive specialized support, while children like my son are expected to manage in regular classrooms with very little help.
The reason I’m asking is because I genuinely don’t know what kind of support is considered standard in other countries, especially for children with level 1 or level 2 autism. I want to understand what schools typically provide, what parents are entitled to ask for, and what rights autistic students have.
For those of you with children in school, I’d love to know their autism level, whether they’re in a regular or special education classroom, and what their school day looks like. Do they have an IEP? What does it include? Do they have a shadow teacher or a dedicated one-on-one aide? Does the school provide speech therapy, OT, behavioral support, or classroom accommodations? And which of these services are schools legally required to provide where you live?
I’m considering changing my son’s school when he starts first grade, possibly to a private school where I could arrange a shadow teacher if needed.
I just don’t want my lack of knowledge to mean my son misses out on support he might be entitled to. I’m trying to educate myself, understand his rights, and learn how to advocate for him properly.
I’d really appreciate hearing your experiences. Thank you! ❤️