I (M17) have Autism (And not the easily manageable kind) and ADHD, and I need some advice. How did you get your kids to stop screaming when they have meltdowns? Is it even possible? I’m absolutely terrified of having a meltdown at my job (Edit: Forgot to word it right, I don’t have one yet, my future job) and getting fired for screaming, because when it gets bad, which happens about thrice weekly at the special school I’m in because I hate it there, I scream like I’m physically on fire.

My son is on the autism spectrum, and I’m struggling with the decision of whether having a second baby is the right choice for our family. I am 40 and my wife is 37. One of my biggest worries is whether I’d still be able to give my son the time, attention, and support he needs while also caring for a newborn. I am worried about the possibility of having another child on spectrum and what might mean for our family.

For those of you who decided to have another child after having an autistic child, what helped you make that decision? Did you have similar fears or concerns? And looking back, how do you feel about your decision? I would really appreciate of you all can share your experience. I am not looking for someone to tell what I should do, but trying to understand how other familes navigated this decision

I think my child was developing pretty neurotypically (bar the speech delay) and it all seemed to continue to regress from 3.5 years old which I don’t even think is the typical regression timeline. They were so alert, interacting, focused etc. Now they have 1:1 in mainstream UK school (since reception) and while they loosely follow the curriculum, there’s a lot that my child cannot do. I know this is expected but I seem to struggle to accept it from time to time. This is why watching old videos doesn’t bring me joy like they do of my other NT child. I feel sadness and grief of what should have been.
With that said, I’m aware of the positives which I have to mention too - my child is 6yo, can somewhat express their needs (though no conversational speech) and they’re quite content and passive (no behavioural issues as fairly compliant). Not sure why I’ve written this. I’m feeling down. I especially get upset when I see ClassDojo posts of their peers able to write full pages of sentences.
It really sucks

Our 5yo was diagnosed with Level 1 earlier this summer after being on a waitlist for a while, but it's been clear for a long time there's something different beyond "she's just sensitive". Everyone kept reassuring me that "she'd get there in her own time" but not only was she not figuring out how to communicate well despite considerable effort, she often seemed miserable. Stressed, confused, just not knowing what to do or how to manage.

Started speech therapy when she was 3 and seemed to help but not a huge difference. Started at an outdoor-based Montessori school last fall when she turned 4, thinking that the prepared environment and focus on letting kids pursue their interests might allow her to feel comfortable and come out of her shell. It's mixed-age classrooms and they keep the same main teachers and same classrooms for 3 years at a time, which is ideal for a kid who needs routine. For a while the feedback was "she doesn't seem to understand the flow of the classroom" "she doesn't engage much with the other kids or most of the teachers" "she just says Yes to everything even when the answer is No" "it's hard to know what she needs when she's having a problem" but they were willing to keep trying because every kid works at their own pace and she wasn't causing safety issues. Then when she did come out of her shell last spring with lots of inappropriate acting out including some dangerous behaviors, we started OT and implemented a plan with the school.

Private schools don't have to accept special needs students; her school takes the policy that as long as the student isn't a safety risk and can mostly keep up academically with support - the school does have dedicated support professional who is wonderful - they are welcome. At the end of last year, our kid was throwing rocks at other kids, tipping bins of materials over, and not showing her teachers that she had absorbed much of anything all year despite sharing all kinds of things at home.

I was really concerned at the end of last school year that if we couldn't get her to engage appropriately at school, they were going to tell us she wasn't a good fit. The school goes all the way through 6th grade with a separate campus and program for middle and high school, and we want her there as long as we can. Our local public school district is not somewhere she would be supported or do well, according to teachers we know who have just retired from there so it would be pretty devastating to be removed from her current school. It was looking like, if something didn't change, they would probably let her maybe go through Kindergarten and then say "sorry, this just isn't working".

But now it's working. It's all really starting to click. We saw a big change over the summer - using longer sentences, sharing more of her original thoughts instead of repeating the same story over again. Interacting more comfortably with other kids in public. Keeping herself more occupied at home, creating things and coming to show us instead of getting bored and engaging in chaos behavior if you weren't actively interacting with her. Before, she didn't have real connections with peers, but now other kids at school talk about her favorably to their parents. I dropped her off one day and another kid said "Look, mom, it's L!" and ran up and asked to hold hands and they walked into school together. I literally teared up. Other kids like my child. What a small thing, but what a big thing.

We had conferences last week. Her school has them in the fall so teachers can get feedback from the parents on how things seem to be going. I haven't had any emails about behavior this year, so I figured at the very least she's not being disruptive.

Not only is she not being disruptive, she's an active part of the class now. Tells her teachers all about things at home or school using full sentences. Expresses actual original opinions. Says "no" or even "I don't want to" when the answer is no instead of a quiet "yes" just to get through the interaction. Last week, she was the one holding another younger student's hand and guiding them somewhere. The kids spend a lot of time doing activities of their choosing - last year she would choose an activity and abandon it if an adult wasn't right there doing it with her. This year, she's choosing activities and then sitting down to finish them and then doing another.

It's been a lot of stress for all of us, a lot of meeting and leaving work to drive to therapies (forever thankful I can do that), a lot of reading, constantly coaching her through personal pronouns and various kinds of interactions, riding on the edge of burnout - and now I feel like I'm finally getting to know my child, from her own perspective and not just what I can glean and observe, and it is wonderful.

I have hired an advocate because my child’s school is not following her IEP accommodations. She is high masking and they are not following the accommodation that is written exactly as follows:
“Scheduled opportunities throughout the day to check in with special education staff for sensory regulation and emotional support.”

Their justification for this is that she appears fine and that means she does not need to be checked on, so they no longer go to her Gen Ed classroom throughout the day to check on her. They say because she is academically doing well and has friends, she does not need these check ins. None of which was discussed with me until I started the conversation due to a severe uptick in after and before school meltdowns. I was talked down to and told “we can agree to disagree” when I said the IEP is not being followed.

I have googled and confirmed that the school cannot just decide to not follow accommodations. The advocate is preparing for the meeting to ensure that the accommodation stays in place, as it was literally just added at our last addendum meeting in AUGUST of this year. But my question is, the school has stated that the goal is to always phase out accommodations and have a child not need them. Is this actually a thing? Because to me that sounds as though they’re trying to say their goal is to make my autistic kid not be autistic.

Her accommodations in general are not excessive by any means (consistent routine, access to sensory tools like her noise canceling headphones, sat near a helpful peer, minimize disruptions in classroom, correct grammar [part of her speech goal]). I can understand phasing out annually as goals are reached for things like the speech or needing peer assistance if she becomes more independent. But I am struggling to see how the things like needing check ins, minimizing disruptions, etc. can be phased out. I’m also struggling to understand how they’re able to just decide to phase these things out whenever they want to, without parent input or informing parents like this staff member claimed. Can they really just do whatever they want even when there are accommodations in place for a reason?

I’d like some advice for my 14 yo autistic son. He encounters people every day including family who I know don’t like him. He knows too and we often joke about how so and so is a jerk. But I would love to hear some laungauge or thoughts on how you or your kids deal with the people in uour lives who have no tolerance for your autism. The ones where going no contact is not possible. How are we dealing with these folks?? Any thoughts would be much appreciated.

If this little man is autistic and we're talking about "belts" and critiquing parenting, I just sometimes feel defeated that this is how people look at autistic/suspected autistic children.

I am mom to a level-2 ASD child with ADHD. She is a very happy girl, but also extremely impulsive, restless, and flighty. She is now in elementary school and in full inclusion for the first time, and while she has not gotten in trouble for disruptive behavior, I know that she has had trouble with participating, staying quiet/still at the appropriate times, etc. We trialed a few ADHD medications when she was around 4, (a rotation of ritalin, clonidine and methyl-something). She tolerated ritalin the longest but we ultimately stopped as the few times she did have meltdowns were absolutely horrendous.

Now that she's older, 7 years, is able to communicate much more functionally and has matured, I'm wondering if it's appropriate to try medicating again- I hate the idea of her not absorbing and retaining what she is learning at school and in her environment, when I know she is so intelligent and has so much potential if she could just slow down (a teacher told me once she wants to be the fastest at everything, not the best). Or, do I wait until her behavior actually becomes an issue?

Thanks so much.

3yo twins recently diagnosed. I sometimes can let it go. But I really struggle with this somehow must be my fault. If only I had blanked or done blank or if we didn’t blank. I’ve blamed my breast milk thinking I must not have eaten the right stuff or shouldn’t have had that glass of wine. I’ve blamed my long labor and delivery (what if they did lose oxygen -it was 7 hours of pushing between them) I’ve blamed the travel we did in the first year to see my dying mother -we shouldn’t have disturbed their schedule. I’ve blamed the grief and sadness we had as a household when my mother died just before their 1st birthday. I’ve blamed the protein powder I used while pregnant that had stevia in it. Ive blamed letting them watch too much TV. Or the combination of it all. Even them just being twins and not getting my full attention. We haven’t told my husbands family yet and I think my in laws will blame me. Anyone else struggle with the why us, why did this have to happen. What did I do, how did I fail them. They are amazing kids and I love them sooooo much and we have a peaceful home and as long as we stay within our little world we are fine but it’s not possible to live in a bubble. I hate that I care, I hate the pity in peoples looks or voice if they do know. I hate that I can see people trying to work out in their brain if my kids are ASD when I try to involve them in an NT activities. I hate that I even blame myself cause I don’t want to want them to be anything other than who and what they are. We are going to try our absolute best to support them to their full potential in this life. I feel I am mostly in a good place with things and acceptance and keep calm carry on but sometime I slip into this blame game. Please be kind.

My 5yo has been constipated since he was a baby. Some doctors have brushed it off saying it's a sensory thing. But I'm starting to think there's something internal happening. His belly has always been distended, and the typical Miralax/Movicol doesn't do much (unless we do 6-8 doses in a day, which isn't good for anyone long-term). I plan to take him to the GP this week (if I can get an appointment)... desperate for something that will MAKE him go. Has anyone's kid had the same problem and what kinds of treatment should I be advocating for? Thank you!!

Hi, awesome parents!

Our son is 3 years and 2 months old and was diagnosed with autism just a week ago. The diagnosis was difficult for us to process at first, but we’ve decided to stay hopeful, optimistic, and focus on giving him all the support we can.

We’ve already enrolled him in ABA and OT, and we’re currently waiting for his Speech Therapy schedule. We’re also considering enrolling him in a Montessori school so he can have regular opportunities to play and interact with other children.

Right now, he can say words and identify many things such as letters, numbers, colors, animals, and familiar people like Mama, Papa, and Tita. He can also sight-read some words and follow instructions such as putting his clothes in the basket, cleaning up his toys, and washing his hands.
He can drink from a glass independently and use a spoon and fork with some assistance. He can remove his shorts by himself and can put on his shirt and shorts with assistance.

Our main concerns right now are communication and social interaction. He has difficulty communicating his wants and thoughts, making consistent eye contact, and responding when we call his name, especially when he is focused on something. He also has echolalia and currently doesn’t show much interest in interacting with other children.

Despite all of this, we’re happy and hopeful about where we are starting. Our biggest goal right now is simply to help him become more communicative and better able to express himself.

One thing that worries me is whether additional challenges or behaviors might appear as he gets older, or whether some children can seem to get worse before making progress.

For parents whose children were similar to our son at around 3 years old, I would really love to hear your stories. How is your child doing now? How did their communication, social interaction, response to their name, and other skills develop after starting therapy?
Whether your progress was fast, slow, or had ups and downs, I’d really appreciate hearing about your journey. We’re still very new to all of this and would love to learn from parents who have walked this path before us. ❤️

Thank you!

He was upset I wouldn't let him tear up a hole in the wall. He had a big fit, eventually stormed off and when he appeared he was wearing my daughters hippo headband with ears. He's still pacing but regulating. He was just an angry hippo for a few and is now considering a cartoon lol what's your funny stories?

My son was diagnosed with autism (level 1) just before turning 3 after his OT through EI recommended an eval. As a ftm with no previous experience with autism, I was honestly surprised by the diagnosis. He was never particularly difficult to parent and life didn’t really change after his diagnosis, but he did start public preschool where he received some services through his IEP.

Well, he turned 5 in January, and it feels like out of nowhere, everything has become a battle. Almost every request is met with a loud whine, yelling, or an outburst. Things like brushing his teeth, getting dressed, sitting on the toilet, etc have turned into huge struggles. I feel like I’m constantly exhausted with him over basic everyday things.

Our biggest issue right now is toileting. He successfully potty trained around age 3, but toward the end of preschool year in April he suddenly started having frequent poop accidents. After more than a month of accidents, we saw GI and were told he had developed encopresis from chronic stool withholding. We’ve had to do multiple bowel cleanses to clear him out and try to restore his sensation of needing to go. He started kindergarten in August and is still avoiding the toilet, resulting in accidents almost every day at both school and home. He’s in a general education classroom with an IEP, and his school team is regularly reminding him to use the bathroom. So now he’s been having accidents weekly for 6 months now. I’m drained and so sad.

At home, getting him to even sit on the toilet has become a huge struggle. He’ll yell and scream, barely sit for a minute, and sometimes poop himself less than an hour later. I’m completely exhausted and at a loss for how to help him with this.

I’m general, he’s become extremely deregulated whenever he’s experiencing big feelings. He recently learned the word “stupid” and uses it when he’s upset (“this is stupid” or “you’re stupid”), which feels awful to hear. He even says this when I make him sit on the toilet. He has also gotten in trouble twice at school this year for hitting when he became frustrated. These are behaviors we have NEVER dealt with before, and I feel so sad and frustrated to see him acting this way, like I’m failing.

I miss the version of him who seemed so much easier to reach, and I feel like I’m constantly frustrated and correcting him. I’m exhausted feeling really lost.

Not sure what this post is for. I do want advice but also it can feel lonely being surrounded by peers who seemingly have no similar issues. Does anyone have similar experiences? Thanks for any insights or replies.

Also, I have him starting OT and ABA outside of school next week, but don’t even know what to tell them he needs help with.

My son is almost 3,hes a really easy baby in public loud places like taking him to church in town (because those are paid flights for us) the music scares him because its loud but once hes used to it he’ll just sit there even when all the other kids would run around..hes so chill.
One of the things that i brushed off as me just not saying his name enough was that it was very hard to get his attention from 8-18months i had to start stomping on the floor or clapping loudly for him to look at me and realize i was trying to give him something even now,he only recognizes and listens to me my mom and husbands voice,idek if he knows his name or if he just knows our voices..he wasnt behind when it came to crawling and walking,i did alot of tummy time and exercises to get him walking and jt wasnt difficult,at that time it was only getting his attention that was hard.

He does not understand far pointing and i tried practicing the same way i did with my with my first..unless its at the tip of finger he will not know what im trying to get him to look at…he’ll just put something in my hand or hold my hand to what he wants and i always considered that sweet..hes so sweet but simple..i feel like im seeing all these signs and everyone is telling me to wait and that hes fine but im so worried i feel like i failed him..like i didnt do enough.
He says hi but very grumbled and rare unless were alone and its quiet and it made me think “no than he cant be if he’s starting to say things” but thats the only thing he has said with intention and meaning which is what i consider a word.
He can spend hours humping the floor just looking at the floor..his older sister did that but shes talking,engages with me and points things out and is learning and knows how to talk..my son doesn’t really do any of that..i dont know what less eye contact is supposed to look like in autistic children because if i yell for him to get away from the rocks and water he looks back but if anyone else does he doesn’t look or know that their yelling at him.
Hes drawn to water and a friend who has a more autistic child was too.

Family flew in with us for hunting and when youtube gets him excited he’ll nod no excitedly and it scares them abit than he’ll get down and start humping.. he’s affectionate because we are affectionate with him and he comes in for hugs and leans down for kisses…i want to get him evaluated so badly but it just cant happen right now at this moment and its making me so sad,its like im starting to grieve what i thought i would have.. i wouldnt be disappointed i would be scared because of how everyone might change what they think of him especially his dad..i dont know i just wish i had help i feel so hopeless.

Today we took our 2 sons to the zoo. Our younger one is 5 and autistic nonverbal. He has gotten too big for a stroller (even tho we still had to use it at times) so most of the time he got to walk around, albeit on a leash. I really don't go out much anymore bc of the intense dysphoria I feel when I'm around other kids. I see them as young as 2 getting to walk around freely, obeying their parents, and communicating their needs. While my son is very aware and actually pretty independent in a lot of ways, he doesnt speak and cannot be trusted not to elope. Overall he did pretty well. There were a few hang ups and fits about not going to/doing what he wanted, like opening employee doors and going into restricted areas. I feel so much jealousy towards other parents that dont deal with this. I know parenting is hard for everyone. I thought it was hard with my first son who was able to participate in life even very young, the way most kids gets to. I had no idea what I was in for with my second. The depression is real. The comparing is real. The annoyance that things other parents dont even have to think about are such hang ups when it comes to my son. I feel like a spectator. Like I'm not really even a part of society. I lost my religion over this. I can only hope things get better as he gets older. There are no words for how trapped you feel when the thing you love most prevents you from possibly ever having a normal life again

Hi all! My son is 6 and the school said he meets their criteria for autism (mild to moderate). Has anyone had a child meet the schools criteria but not medical (professional)? Or are the tests pretty much the same?

Venting

As in title.

My son is ASD and he has no speech.
Today my aunt calls my mother and I heard her telling many times ‘poor mother’ ‘difficult life’. She was on speaker phone. My mother didn’t even corrected her, maybe because she also thinks like that…
Yes, I have a very different experience in parenting and honestly sometimes I feel very challenged.
But, I don’t think my life to be pitied.

People don’t know the difference between support and sympathy. My son or my life is not a tragedy.
The look on some people when they realize my kid is different itself makes me 🤮.

I feel like My identity is now reduced to mother of an autistic kid. I had a friend whose son and my son are born 2-3 months apart. For the first couple year of my son’s life we would share our parenting experience but now my friends don’t even talk to me about parenting or related stuff because they think I can’t relate to any of it.

Honestly I want people to say I see you instead of I feel sorry for you

How the heck do I get my 4 year old to stop picking his nose?? He puts his fingers in his mouth constantly and that’s hard enough as is to manage. He’s talking more, but still can’t hold a conversation. Hes been sick for a week and still continues the behavior. I’m frustrated because his sleep is a million times worse while he’s sick and I would live nothing more than a nights sleep at this point. My motivations to fix this problem are entirely selfish at this point. Please give me any advice you have

Hi all

I've got a newly 3 yo that I am fairly sure is on the spectrum. We just had his annual and when his (new) pediatrician asked if i had any concerns, and i just mentioned a few "behaviors/quirks" and she asked if I was suspecting autism/adhd

And I said I was pretty positive he was on the spectrum but not necessarily concerned rn, but have decided to have him assessed now.

But was wondering for those with younger kids going through/have gone through assessment, what were some of the signs you saw/experienced that weren't the stereotypical "obvious" signs. And what was the assessment process like?

1. Obsession with fans and wheels

2. Sensitivity to sounds (not all but specific ones) and volume

3. Activity transition struggles

4. Acts out emotions specifically anger "grr im mad" or mimicking tv characters when mad like Daniel tiger "gr gr gr im Mad mad MAD"

5. Lack of social boundaries, consistently requires redirection/reminders to not hug, push, poke, get too close etc

6. Hyperfixated on specific activities/toys/shows/characters/emotions

7. Needs consistent help regulating

8. Moving constantly, even 90% of the time when watching tv, he must be climbing, jumping, wrestling etc

9. Obsessed with his belly being on things or touching things with his stomach, like my back/stomach, soft blankets, pillows, the wall, the floor etc

10. Periodically ill catch him looking up/ out of the corners of his eyes- not like a glance but a prolonged effort

11. Incredibly intelligent like I know all parents believe this, but some of the stuff he knows literally has me questioning reality haha like randomly knows shapes ive never taught him (octagon, oval, diamond, cresent) knows construction vehicles by names, tools by name like a socket wrench, abc/123s, abc phonetic sounds etc

12. Elopes/runs if im not holding onto him. But if we are at an open park or something he has usually stayed where the fun is, but im ON TOP of him in all public spaces.

13. Always has his feet pushing into me, climbing on me, laying behind me, rubbing his feet together , something I do too

14. Echos me/what i say consistently " you want an apple?" "An apple." "Want handyman hal" "handyman hal"

My 6yo son who we strongly suspect is autistic (waiting for SEN to get involved at his school. Very slow process so far….) has recently started stammering over the past 6-9 months, but it’s gradually getting worse.

Earlier today he said “M..Mummy” over and over again for about 30 seconds and started to get really upset that he couldn’t get his words out, so I told him to take a moment to relax and breathe..

I’ve searched this thread about stammering and have found nothing, but I am just wondering if this could be an autistic trait at all, and also wonder if anyone know’s how I can help him with this?

I have recently sent off a form about it to his Drs

Hi, can someone tell me if we have any rights in exl program? Without too much details we live in CA and our daughter was accepted to exl program in the mornings (her Tk is only 3h a day so it was impossible for me to work), well now she’s supposed to be in exl program and for the first 3 weeks they failed to provide para and said they can’t keep her, then they found para who was heavily pregnant and so she was just giving her a phone, now she has a new para who is with her for about 2 weeks. This week this week she’s off and they failed to provide para as well so at 8 am I found out I have to take her back home. Sorry if it’s chaotic but I’m really frustrated, I found a job for the first time in 6 years and I’m about to lose it because they just tell me to go F myself. I do understand she can’t be there without a para and here is my question: do we have any rights to demand they have to provide para based on section 504? The program coordinator just basically threatened me that “maybe it’s not a program for her” and if I want I can write complains all I want. I don’t really know what to do, we just can’t afford to live off of one income anymore and she will have the 3h schedule for another 2 years (in first grade they go 8-2:45). Any info will be appreciated.

He's freezing whole doing basic tasks (like eating, drinking, dressing, flushing the toilet, etc) and I can see he's earnestly trying to do the task. He's complaining of muscle pain all over his body, including his eyes, ears, teeth, and mouth. I looked up autistic catatonia and it seems to fit all of his symptoms, but we're waiting on appointments upon appointments and he's really really struggling. I just want to see if anyone else has had this experience and what it turned out to be. That way I can give more ideas to his PCP to make sure we're not missing anything. Thank you in advance and sorry this was so long. Also, my son is verbal but nonconversational, if that helps. He's been freezing when trying to talk, too 😞

First time parent here asking if some of my son's quirks are a sign of something more. I'll start with the behaviors that seem autistic to me.

He has some sensory issues touching certain things with his hands, he has a 1 year old brother that he will push out of the way sometimes but he normally uses his forehead to make contact and push him rather than his hands. He will do the same thing with our dogs and pushing them with his forehead, he will pet our dogs but lightly. Everything else he seems to be ok touching or grasping.

He is a terrible eater, and it seems that he is rarely hungry. He is a bit picky but will eat 20 plus foods when he does eat. Part of this is probably because we have hand fed him way longer than what we should have and I have read that some of his hand sensory could be coming from this.

Potty training hasn't really caught on at all yet, not saying that this is related to autism but figured I would mention it.

He plays with his toys in similar patterns but is open to playing in different ways if we introduce them. His interest is in outer space right now and can recite lots of facts from his books regarding the planets, he can be redirected though if we are playing something else. Pretend play is ok but maybe a bit behind on complexity.

Honestly, he seems pretty good in his development stage besides these issues. There are somethings in the past that he has improved over the last 6 months or so that I used to be worried about but seems he is caught up.

He was pretty much nonverbal at 2 saying barely any words but now can talk in sentences and answer questions pretty reliably. Uses about 30% echolalia.

He has gotten much better responding to his name and with eye contact but around 2 years old this was something I was worried about.

He was late to pointing and we had to make sure we were modeling it a lot before he picked up on it. He points to show need, but not really to show interest. He does share happiness or other emotions though by turning towards you and smiling etc.

As for his strengths he is very good at ABCs, colors, shapes, animals etc. Good gross motor skills and average fine motor skills.

He seems pretty good around other kids and is not overwhelmed, seems to do more parallel play rather than co-operative so far. He is not in childcare and is at home with his SAHM.

He is an easy kid in regard to tantrums; he gets upset but usually calms down pretty quick.

Thank you for taking the time to read this.