r/AutismParent

Looking for advice.

My son (11yo ASD) gets really upset anytime we correct his behavior. We focus on phrasing things in a direct and positive way instead of phrasing things negatively. We avoid saying that we’re made or upset, we do our best to never yell and stay calm and talk in neutral tones. We know that the real world is harsher and he will eventually have to learn to process other people’s anger but for now, as he’s learning about rules and consequences, we would rather be calm so he is receptive versus shutting down.

However, he shuts down anyway. He’ll repeat this script over and over, “I’m sorry mom, I’m sorry dad. But sorry isn’t enough. I always make bad choices. Why do I always make bad choices. The talking is going to take forever but I hate waiting .” This is pretty common when we address bad behavior, sometimes the words or script changes but this is pretty much how it goes. When we try and talk, he just keeps repeating these phrases. We’ve tried waiting until hours later to discuss the behavior and consequences but it doesn’t make a difference, he launches back into this. He also mentions how it makes him uncomfortable. He tends to get emotional, either with anger and frustration which can lead to foot stomping, yelling, and tossing things (huge improvement though) or crying and eventual sobs.

I don’t know what to do or how to approach it. I feel like he has some trauma linked from getting in trouble at home and/or school at a young age. It definitely took dad and I time to learn how to process some of his actions calmly and no parent is perfect. But he still needs consequences but more importantly, I want him to understand his actions so he doesn’t continue making them. I feel like as he reaches preteens he feels shame deeply. He also intentionally breaks rules and then freaks out when caught. A lot of times the rule breaking is around social media and screen time.

Any advice appreciated.

I am looking for some help please regarding my 4yo and getting an autism diagnosis. I have been butting heads with the school as they are not seeing any signs, but it is very clear to my husband and I that there is definitely signs. Here is what we have recorded so far.

1. Constant running back and fourth while zoning out.

2. Constant junping up and down, sometimes flapping his hands, sometimes not.

3. Rocking back and fourth twisting his hands behind his head and sometimes grabbing his head or neck.

4. Skin picking, especially toes and fingers.

5. Constant grabbing of private parts (read this could be a sensory thing)

6. Meltdowns (tears) over the smallest thing, getting very angry and trying to hit or kick, angry screaming to the point he gets red faced.

7. Telling us his brain is too loud and busy.

8. Refuses to eat anything at dinner times, slowly gone off all dinner related foods pretty much bar 2 or 3 meals. (He used ro eat everything and anyhthing) Basically plain food without any sauces. Refuses pretty much every evening meal and again it leads to tears and I can see he struggles to communicate whats wrong.

There are probably more but this is all I can think of for now.

Is it worth making a drs appointment as the school won't help and see what they say?

Any help would be greatly appreciated. Thank you in advance. Xx

My three-almost-four-year-old daughter is Level 1 autistic. She’s currently in OT and speech therapy and is on a waitlist for an ABA day program. She’s come a very long way since starting therapy, and I’m incredibly proud of the progress she’s made.

But one thing has remained incredibly consistent: the crying.

She cries over seemingly everything, all day long. A small bump on the arm or stumbling in the kitchen results in immediate tears and sobbing. If we’re in the car and she drops a toy where she can’t reach it, she becomes inconsolable. If a commercial interrupts the music on the radio, she cries. Something doesn’t happen exactly as she expected? Tears.

This happens from the time she wakes up until she goes to bed. Some days it genuinely feels like every 10 minutes we’re dealing with another crying episode.

And I need to admit something that makes me feel pretty shitty as a parent: I am so burnt out by it. The constant crying grates on my nerves to the point that I sometimes feel angry the second it starts, even though I know she’s only three and isn’t trying to make my life difficult. I feel like I spend my entire day regulating and consoling her, only to do it all over again a few minutes later.

What I’m struggling to understand is why her reaction is so intense. Is this emotional dysregulation? Sensory sensitivity? Difficulty coping with unexpected changes or frustration? Does she genuinely experience these small things as being that upsetting in the moment? Or could some of the crying have become her default way of communicating that she needs help, comfort, or attention?

How do I respond appropriately without reinforcing the crying or completely exhausting myself?

I don't want to dismiss genuine distress just because the trigger seems insignificant to me. At the same time, I don't think I can realistically stop everything and provide a full comforting/consoling routine every single time she cries throughout the day.

Parents who have dealt with this, especially with kids around her age, what helped? Did your child eventually develop other ways to handle these little frustrations? And how did you keep yourself sane in the meantime?

My son was assessed for speech & OT through a birth-3 program from the state when he was about 2 and a half and did not receive services (he has a diagnosis of autism so someone did come to our house weekly just not a speech therapist or occupational therapist). At 3 he was assessed through the school district for pre-k and did not receive an educational diagnosis of autism and did not qualify for speech or OT through the school. I decided to try private therapy services and he was evaluated once again for speech & OT in July of this year at age 3.8 and he did not qualify. I see him struggling with things that these therapies would help with and I am at a loss. I am looking for advice on whether or not its worth it to have him assessed again through a different therapy company. I have not met met insurance deductible so these evals are costing between 100-600 dollars just for him to be denied services. Any advice/stories are welcome. I feel like its roadblock after roadblock. He will not be able to attend pre-k until next year because the cut off for the school year is Sept. 1st in my state & he was born in late October.

I’ll never forget the parent-teacher conference where my daughter’s teacher complimented us on how well behaved she was. Just a few weeks before, I had emailed the teacher to give her a heads-up about my daughter’s sensory needs and high (but often masked) anxiety. At the conference, the teacher made it seem like I was talking about a completely different child. What she didn’t know was how much effort it took just to get my child in the door. 

Hi! I’m looking for recommendations for my 9-year-old son who is autistic and very verbal but struggles with expressive/receptive language, reading comprehension, word finding, organizing his thoughts, social communication, and stuttering/cluttering.
For parents with a child with similar needs, **what therapy, SLP, specialist, or program made the biggest difference?**
We’re in the Los Angeles/South Bay area, so local recommendations would be especially appreciated. Thank you!

Hi everyone I have a 10 years old and he is on the spectrum (autism) he is very social but has little opportunity to interact with other kids his age because he is home schooling. Lately he has been asking to get any apps to allow him to chat with friends but of course we are not letting him, so I would like to see what other parents are doing. I’m starting to get concerned about his future and want him to learn to socialize on a save environment. Any serious recommendations would be appreciated. Thanks.

My 14 month old doesn’t point, does not bring toys to us, only spins toys and does not functionally play with them, flaps his hands a lot, does not understand simple questions like where’s mama and eats only puréed food. He has no stranger anxiety and goes to everyone.
He babbles a lot, can copy waving and clapping,crawls really well, cruises along furniture,makes eye contact, responds to his name,has a great pincer grasp and sleeps well at night. He never cries except when he’s really sleepy.
He was diagnosed with autism by his paediatrician today. I’m very overwhelmed at the moment. I am looking for a bit of glimpse into what would his life look like from somebody whose child was similar at this age. Also, what I can do to help my baby live his best life.

So there is a baseball league where I live for kids with special needs. They range from wheel chair bound to kids on the spectrum. My child will finally be old enough in the spring to sign him up. He is level 2, he isn’t a traditional eloper, but he doesn’t like waiting in lines or sitting still. Have any of you all signed your ASD child up for a sport and if so, how did it go? My child does really well once a routine is established, he follows it very precisely. He loves being outside and I think he would have fun, but I’m just not sure if I should try or not.

Hi everyone,

Wondering what everyone’s experience was with their autistic child in their younger years. My daughter is level 3 almost 3 years old and nonverbal. We have a son who’s almost a year old and like many other almost one-year old’s has started cruising around on furniture and trying to follow his sister wherever she goes. He think she is the sun, the moon and the stars and she wants NOTHING to do with him. My daughter will cry and freak out when he approaches. If he’s cruising furniture near her, she will pry his fingers off the edge to make him let go and fall down. She will push his head away, strong arm him, etc. Did anyone else have this experience? I wouldn’t describe her behaviour as aggressive but more indifferent and just a complete lack of interest with the need to maintain space. It’s interesting because she has taken a liking lately to other children but only older children, never her age or younger. I feel horribly for my son who just wants to be seen by her and play with her he adores her so much and I’m afraid she’ll never return the sentiment. He is currently presenting NT traits and very different from how my daughter was at this age. I’m also concerned about her pushing him away/shoving him away from her toys etc. We do try and maintain her boundaries to keep her comfortable ie not letting him grab her or intrude her space within reason, but she doesn’t want him to play with any of her toys and won’t let him sit with us all together on the couch. Advice welcomed and appreciated!

Hello,

I took my son to his 24 month appointment with his pediatrician. At 18 months she recommended EI due to my son's lack of communication. My son knows words but doesn't say them often. EI at my state never called me back after the first outreach so we took him to private ST. His private ST said she doesn't think he has autism but will not rule it out because its harder to diagnose with some children as they are still developing and only time will tell.

My son has made a lot of improvement since 18 months. Sometimes there is two way communication but doesn't happen often but he let's us know what his wants or needs.

According to his speech therapist she says she is still on the fence about him because he does repetitive play and wants to do it alone. (Example: he takes toys from one side of the room to the other and back and forth.) But then they are times when he does play and hes engaged with playing with others. He only lines toys in the tub but then drops them back in or doesn't mind if I move them. He hand leads but points or gestures at what he wants. He brings me his toys and started saying open.

Socially my son smiles at everyone and hugs them. My son hasn't been exposed that much to a group of children, I'm a sahm. We take him to public places and doesn't have meltdowns. Hes okay coexhisting with children but doesn't parallel play yet with them. His pediatrician is concerned that he should be doing that already but in my head i haven't exposed him to play groups or other children often. He does hug kids at times or boops them but can also ignore them.

My son also battles sleep but once he knocks out its 10-12 hrs of sleep. Sometimes i have to rock him on the stroller other times he knocks out on his own. My pediatrician is concerned that he might be high functioning and wants to make sure he doesn't fall through the cracks and wants him to start ST, OT, behavioral sooner than later.

His speech therapist says that my son is a hard one for sure to tell. She said she would be curious how his evaluation will go or if he would also stump the person assessing him.

My husband thinks we should wait to see if its more evident as he continues to develop. My siblings also think I should wait. They say he might be just neurodivergent and not autistic.

As his mother who's and overthinker and anxious i honestly don't know what to do. But I do know that I want to be able to give my son all the resources he needs. I have called places to get him evaluated but waiting to hear back.

If I have written anything that may offend anyone, I apologize. Please correct me if something came across as offensive, I am learning. Thank you for the advice and suggestions!

Hi , my 3 yo son has been attending OT for the last 10 months and has made amazing progress. He is on his third therapist (first was an older lady who had medical complications so she couldn’t see him anymore, and one left because she found a different job) and had his third session with his new therapist last Friday. She seems like a very nice woman and my son seems to enjoy going to his appointments. During his hour long sessions I have ALWAYS, either came back with him (I went back with him until he felt comfortable enough to go back alone , probably 4 or 5 sessions) or waited the whole time in the lobby incase something happened and he needed me or the therapist just needed an extra set of hands . Well last Friday he had a nose bleed on the way to his session , which I caught quickly and got it to stop and then cleaned him up , but he did have two VERY SMALL spots of blood on his shirt. When his therapist came out to the lobby to get him I informed her that he had a nose bleed on the way to his appointment so if it started again to just come grab me and I would handle it . Well when she brought him back to the lobby after his session, I noticed he had one a different shirt and was holding a small bag with his shirt in it , so I asked if his nose started bleeding again, and she said “ no , I just changed him to not spread coodies “ .

So my question is , was it appropriate for her to take my child’s clothes off without telling me , and while I was just 10 feet away in the lobby ?

I feel that it’s inappropriate to take off any child’s clothes without either having the parents consent or without being well acquainted with the family to the point you know it would be appropriate (family member, trusted friend) . Especially considering that she works with a vulnerable population, but I wanted to get an outside perspective before possibly changing his therapist or therapy office .

My son is 4 year old and we live in Canada. We are bilingual and speak different language at home. My son is speech delayed and also seems to have trouble in emotional regulation ( screams a lot nowadays). We saw 3 doctors and all of them denied autism and we are still in process for speech therapy.

The issue with my boy is he is just in his own world, doesn’t care what’s going around, doesn’t say what he likes or not. If we ask questions, he can’t answer(he answer simple question about food water etc).he sometimes repeats the things which were told 1-2 days ago. He is not interested in writing or reading ( he knows alphabets, colors , shapes, animals).we are encouraging him to write alphabets but he is not interested. He will be going to school this year and I am very worried about his situation.When we call them he responds after 2-3 times and doesn’t follow directions. Does anyone has go through this situation? If so what helped them? Pls answer. I’m really worried about his future

My child has autism. The school knows my kid is a runner. He has eloped on multiple times. At one point multiple times in one day. Last year my child made it off school grounds and almost got hit by a car. Another parent jumped out stopped the car and saved my child’s life. The school downplayed it.
But now they have placed my child in a classroom-right next- to a door to off campus. It is literally a drop off and pickup zone for all the other parents. Like literally the *beeping* worst place they could put him. Last year he got a way from his aid. He ran aid didn’t catch him he made it off campus.
How do I explain to the school I don’t feel comfortable with my child being placed in -that- classroom.
All it takes, literally all it takes is for him to have a substitute aid, her to get distracted for my kid to get hurt. I’ve seen him with his substitutes before one of them really did leave him unattended in front of his classroom to go get something. (It was in kindergarten so it wasn’t exactly a full time aid but she was definitely supposed to be watching him).
It’s frustrating because I don’t think the school understands. Again it feels like they are downplaying it. I called the office they basically said don’t worry he has a full time aid. Or go write to someone else about it.
I’m just shocked they even thought to place him there.

Hi, I was wondering if I could get some advice, or even just to see if anyone else is having a similar experience so I don't feel so panicked and alone.

My daughter (4) had her first dentist appointment shortly after her teeth came in. They were absolutely lovely and were aware of her needs ahead of time and were so accommodating of her. This was when she was around a year old. My main concerns were that even though she was brushing her teeth, I could still see some slight decay, but she also wasn't a very big eater of sugar. I asked for some advice and clarification on what could be the cause of that and they asked if she still went to bed with a bottle of milk, which she did. They said it was likely the sugar in the milk setting into the teeth overnight after she brushed her teeth. So I slowly got her off of the milk at night. After about a year and a half, she started refusing to brush her teeth and whenever I would try, she would bite onto the toothbrush so it wouldnt move. This lasted about a year. Then she allowed teeth brushing to continue. Now, whilst the dentist were amazing, she has refused to go into the dentist again and I've not gotten her into the past appointments. I was thinking of trying to find a special needs dentist but haven't had much luck. My main concern is that she has one tooth (molar) that is decaying. I don't understand why. I brush her teeth for her now because I'm so worried about it maybe being missed when she brushes her teeth herself. Her diet does now have sugar, but hardly excessively, she is a very beige eater and mostly eats hash browns and fruit. I brush her teeth twice a day, but that one tooth worries me and it is definitely too far to fix, it almost looks like part of it has chipped off and I am wondering if she has hit it in nursery and they haven't noticed (she doesn't react to pain). I'm an over worryer as it is and I know her adult teeth will grow through as she gets older. I was just wondering if anyone knew what I could do in the meantime? I just worry

TLDR: My Level 3 autistic, pre verbal son has significant PICA and elopement risks, and I’m trying to get appropriate 1:1 support added to his IEP. I’ve been advocating for months, but we’ve had repeated communication and procedural issues with his school district, and I’m struggling to get his needs properly addressed. His new ABA team has offered a potential solution where his BT could accompany him to school 3 days a week, but I’m being asked to explain the service delivery model before the district will consider it. I’m looking for advice from Washington parents or special education advocates on how to move forward, get his IEP corrected, and make sure he has appropriate 1:1 support every day.
Okay, I honestly don’t even know where to start, but I’m really hoping someone here, especially a Washington parent advocate, can point me in the right direction.

My son is Level 3 autistic, pre verbal, and has regular PICA and elopement risks. He had an unofficial 1:1 para for his first 1.5 years of preschool, and it was a wonderful experience. Looking back, I was probably too naïve about the IEP process and wish I had pushed much sooner to have that level of support formally addressed in his IEP. Now I’m trying to get that support in place, and I’m extremely frustrated with how things have been handled by his IEP team.

There have been ongoing communication and procedural issues. We had an official IEP meeting scheduled where the administrator didn’t show, and afterward they tried to say it wasn’t actually an official meeting, despite emails confirming it was. They apologized to me in person, but the explanation over email was very different.

Since then, when I’ve politely asked them to clarify things in writing so there is a paper trail, I’ve been removed from email chains regarding my own son while my husband remained on them. It has happened more than once. I want to be very clear that I have been nothing but polite and respectful throughout this entire process. I am not being removed from these email chains because I have been rude, inappropriate, or speaking badly to anyone. I have simply been asking questions, requesting clarification, and trying to advocate for my son.

It has also been extremely difficult to get meetings scheduled or even get consistent communication. At one point his case manager told me he wasn’t receiving my emails, despite his teacher receiving them. I’ve repeatedly had to follow up just to get basic answers and timelines.

About 5 weeks before the end of the school year, we made requests for changes to his IEP. I intentionally brought everything up that early because I knew we needed enough time to address everything before summer and make sure he had the appropriate supports in place for the following school year. Unfortunately, the changes we discussed were not made. His principal also told me it was inappropriate to submit a letter from his pediatrician and refused to include it in his IEP documentation.

Then the principal resigned, and the meeting we had been trying to get scheduled was pushed until essentially the end of the school year. So I have spent most of the summer in limbo, trying to figure out what support my son will actually have when school starts.

We have since started in home ABA, and thankfully that has been a really positive experience. His BCBA suggested that his BT potentially accompany him to school. Since I am already advocating for 1:1 support, I initially thought this could potentially be a great solution. A familiar person who already knows my son and his needs, while also allowing him to access school.

Because our new principal has not started yet, I was told I would need to go through the superintendent. I received this response today:

“Hello _____,
I am back at work, and appreciate the opportunity to respond now.
I need to know and better understand the delivery model you envision for non school provided services for your student. To my knowledge, having a non school employee provide private services to a _____ student while on the _____ campus is unprecedented.
For that reason, I think it would be counterproductive for me to state a willingness or an unwillingness to consider your request at this time until I have a clearer understanding of what is being proposed.
Please explain to the best of your ability, or the ability of the potential service provider, what the intended service delivery model would entail. Having that information will help me better understand your request.
Thank You!”

I understand that she is asking for clarification, and I don’t necessarily expect the superintendent to automatically approve something she hasn’t been given enough information about. But I’m struggling with the bigger picture because I feel like I have been fighting for months just to get my son’s basic safety and support needs properly addressed.

He will only have his BT with him 3 out of 4 school days each week. Ideally, I would like his IEP to clearly provide that he requires 1:1 adult support throughout the school day, with his BT providing that support when she is present and another trained adult designated by the school providing it when she is not.

I don’t want to have to pull him from school on the days his BT isn’t there because his safety needs and support shouldn’t depend on which day of the week it is.

I am honestly so disappointed in how some of the adults involved in this process have handled things that I’m having second thoughts about whether I even feel comfortable having my vulnerable, non verbal child around these adults next school year. That is a really difficult thing for me to say because I want to trust the people responsible for caring for and supporting my child while he is at school. I genuinely hope they understand how deeply disappointing this has been and how much this has damaged my trust in the team.

At this point, I’m honestly so frustrated and worried about sending him back without appropriate support that I’ve even started considering homeschooling, which is something I never wanted to have to consider because I do think school can have many positive benefits for him when the right safety and support structure is in place.

Even little things have left me feeling uneasy. When I spoke with the front office a few weeks ago, the woman sounded genuinely surprised that I was planning to enroll him again this year. I don’t want to assume bad intentions, but after everything that has happened, it has contributed to the feeling that I’m having to fight just to make sure my son has a place and the support he needs.

I’m not trying to play the victim, and I’m not looking for people to simply tell me the school is terrible. I genuinely want to find the right way to approach this and get his IEP corrected before school starts.

I also know we have a big IEP meeting coming up, either before the school year starts or very early in the school year, and I’m trying to do everything I can to prepare for it so we can actually have a successful outcome for him this time. The last two meetings did not result in what we needed, and I really feel like his IEP needs to be amended now to accurately reflect his needs and the support he requires to safely access school.

If anyone here is a Washington parent advocate, special education advocate, or has experience navigating a situation like this, I would really appreciate advice on what my next steps should be. I would also love recommendations for someone I could work with who understands Washington special education law and can help me advocate for him.

I’m also wondering about something more immediate. Am I allowed to keep him home from school until we feel his IEP has been appropriately amended to address his safety and support needs, or would that create a separate problem for us? I obviously don’t want to make the situation worse or violate any attendance requirements, but I also don’t feel comfortable sending my vulnerable, non verbal child into a situation where I don’t believe the necessary support is currently in place.

I’m at the point where I feel like I’ve tried going through the appropriate chain of command, documenting everything, communicating respectfully, and asking for solutions, and I’m just exhausted. I really want to find a way forward that allows my son to safely attend school with the support he needs.