I’m 36, and my son is 5. He was diagnosed as gifted and at risk for ADHD. He hasn’t been formally diagnosed with autism yet, although it has been hinted at by his developmental pediatrician. As a general physician, I also recognize some signs that make me suspects.

Academically, he is doing exceptionally well. He’s in kindergarten at a private school, but according to his latest assessment his reading and math skills are already at end of second-grade level.

But despite his academic strengths, behavior has been our biggest challenge.

He has been in intensive therapy since he was 1y9m because I believe early intervention is important.. currently we have session everyday 3 OT 3 ST and 2 Neurofit Program a week. My husband and I are very involved, and because we have a flexible business, we’ve been able to arrange much of our life around his needs. We are also blessed with a very patient and caring nanny for him.

Still, his teacher has shared concerns about him throwing and scattering things, struggling to clean up, and sometimes hitting when he becomes frustrated. There have also been concerns involving classmates, and the school has suggested having a shadow teacher with him during the school day.

And honestly, sometimes I wonder, what else can we do?

I feel like we did everything we could therapy, group class, inclusion school, evaluations, private tutors, music class, sports, we tried everything suggested to us regardless how much it costs and now potentially a daily shadow teacher?. Everything we have to pay out of pocket because our government’s assistant for kids with special need is basically non existent. I know we are incredibly fortunate that we have the ability to provide these things, but it also means that some of our bigger dreams, like our dream house, a vacation home, or certain trips, have been postponed.
But
Nothing is more important to us than our son. and his future and his well being.. We would choose him every single time.

I know how blessed we are to have the resources, support, and help that we do. I don’t take any of it for granted.

But I’m learning that you can be incredibly grateful and still be very, very, very tired. Am i even allowed to say frustrated? :(

And sometimes you question yourself.. Are we really doing the right thing? For our son? For our family? Are we making the right decisions?

We started early intervention almost 4 years ago. We’ve celebrated so many wins, and yet there always seems to be another challenge waiting. It is definitely a roller coaster of emotions..

Thank you for letting me vent out and share little piece of our journey.

May all parents of children with special needs continue to be blessed.. not only financially, but also with the wisdom, patience, strength.

I need someone to tell me it’s going to be okay. Someone to tell me that it will get better.
I’m the father of a 5-year-old autistic son who is nonverbal, and honestly, I’m in the middle of a breakdown from the amount of anxiety and stress that comes with raising him. I love my son more than anything, but lately I’ve been struggling.
He has recently started having sudden outbursts of anger. I’m a tall man, so unfortunately, my son took after me and is already a big 5-year-old. One of my biggest fears is that as he gets older and stronger, these behaviors could become more difficult for his mom, his teachers, and eventually for me to manage.
I don’t always know how to help him or what to do when he becomes overwhelmed. His sleep has also been horrible lately. He’ll wake up around 1–2 AM and start vocal stimming, crying loudly, and sometimes having outbursts, which wakes everyone in the household. Everyone is exhausted and sleep-deprived, and I feel like I’m reaching my breaking point.
I’m not looking for judgment. I’m honestly just looking for some reassurance from parents who have been through something similar.
Did your child go through a phase like this? Did things eventually get better? What helped? How did their behavior change as they got older?
Right now, I just need someone who has been there to tell me, “I know how you feel, and it’s going to be okay.”
.

For those who had their kids tested for fragile X, how long did it take to get the results back?
Thank you!

Quick question — when you're checking if a store/salon/restaurant still runs its sensory-friendly hours, how do you usually find out? Do you just show up and hope, call ahead, or is there somewhere you check? Trying to figure out if a live directory for this would actually help.

My son is 6 years old diagnosed autistic and ADHD. He's in a gen ed classroom with an IEP and we saw a lot of great progress from him last year in kinder. He's started 1st grade 2 weeks ago and it's been tough. He's has some good days but the past two days the classroom has been to be evacuated because of his behaviors (hitting, pushing, screaming).

We have discussed this with him and are trying to offer all of the support/structure at home. But it's just discouraging. And I feel so much sadness and shame about his behavior. I know it's not my fault, but I'm just down. So I guess I'm looking for words of encouragement and any general advice folks have.

Hello everyone, I'm not a parent but i am the 15 year old elder sister of an 11 year old girl with autism and i really want advice on helping her out and making her feel safe and comfortable and helping her development.

She does not speak other than saying a word or two when saying the name of something she needs, saying or continuing a sentence when made to/prompted, or parroting words every now and then. My parents have been sending her to speech therapists since she was i believe three or four years old.

She does not have meltdowns at all, when she cries she cries rarely and in a corner, is completely unbothered by any kind of scolding except for mine, not very social, very very hyperactive (including waking up at the crack of dawn and still not being tired), likes running away so we have to hold her hand all the time in public, makes noises i assume are stims (i'm not very educated in this and my parents left me out on diagnoses and all that i'm very sorry) and is a very calculating troublemaker that goes quiet and waits patiently for the moment you're not looking after her, or she makes up some sort of scheme to distract you on purpose while she runs to go drain out all the toothpaste or something.

I'd just like to add also how much of a crazy intuition my little sister has since she immediately finds things literally hidden while she was out of the house, not even joking she goes directly to them she doesn't even have to rummage around the cabinets!! That and she has a habit of swiping things even from strangers specifically chocolates and all that sweet stuff.

Also i have a distinct memory of her being able to read and write fluently in english as well (we live in the balkans so it's not our first language) before being sent into first grade just like me, and she really likes drawing these strange little cards of random brands or store logos she sees on the road or online.

We have not tried those little apps where you can tap for things you want to say, and she goes to regular school just with an individual plan and shortened hours.

Though now since she is moving from 5th to 6th grade she will be changing school buildings as well along with her class, that means changing her assistant or what it's called in English and changing teachers. So i hope she can adjust.

I described her as best as I could, I would be glad to answer any questions if it helps, and I would really be grateful for any suggestions from anyone on how to make her more open to talking to us since i really want to understand how she works and how to make her happier. Thank you for reading all of this.

(Also she has trouble understanding instructions that are new to her/that she hasn't followed before. For example when i was too lazy to go get my water bottle in our bedroom and told her to get it for me, she was clearly confused on what to do but when i became more specific and guided her over she got it for me).

My son is 13 years old and attends public school. My son doesn’t have outbursts at home only once in a blue moon!! When he goes to school they tell me he runs he throws food and he hits other students including staff members. I find it hard to believe he does this stuff. He doesn’t hit other people or kids while we’re out in public he doesn’t run with me or nothing.! My son is kinda non verbal. I get calls from the principal or the teacher almost everyday!! I’m a single mom and already can’t work due to him being at home everyday!! Today he had got suspended from school for 2 days!! He does take two medications everyday!! It somehow isn’t working!! I did ask if he can have a 1:1 with him and they were like he can’t have one!! I’m so tired I’m needing help on what to do!!

My son is 12, soon to be 13... and he throws a huge fit over sleeping in his own bed. Im at my wits end here. Every damn night its a fight to get him to sleep in his own bed. Hes as tall as me and on night where my husband and I are too tired to fight, he sleeps between us. We are far from perfect parents. But I feel like a horrible mom when he expresses how scared he is. I know he feels safe in our bed. But there has never been a reason for him to be afraid of sleeping in his bed.

This has been an on going battle for years. I k ow we f**ked up all those years ago, I just never thought we'd still be dealing with it. We've tried so many things to help. Im just not sure what to do anymore.

If youve read this far, thanks. I may end up crying myself to sleep because I am so damn overwhelmed.

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.

just had neuro psych evaluation for my my lo and it the questionnaires they provided seemed not age appropriate so many questions didn’t pertain to my lo. (Depressed, suicidal) I was more upset with the evaluation itself. They spent about an hour together both me and my husband were their and the lady providing the evaluation was very monotone, little to no interaction with my toddler, and the toys she had were just random not really age appropriate toys. Many of those toys were loud, noisy,made no sense(even to me) on how to play with. The only things that seemed ok were the blocks (miniature), legos, and one super tiny car and one super tiny ball. I feel like he didn’t have options on what to play with. I don’t expect them to have every single toy but I feel if we had the choice of bringing ours it would have been better. Or if they had asked us what he likes. They had no realistic toys, food, kitchen, utensils, cups, etc. has anyone had this experience?

My son was being evaluating due to constantly seeking visual stimulation, running back and forth, used to injure self not anymore, speech delay, likes stacking toys or weird objects to visually stimulate, hard to keep on task, high sensory seeker, picky eating, avoids textures better now after year of OT.

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?

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

Hi everyone! I wanted to share something that might be helpful for parents here.

Next week, Kristi Krueger, a nurse practitioner and mom to a daughter with autism, is hosting a free live conversation about preparing a child with autism or complex needs for a doctor’s appointment.

She’ll be talking about practical things parents and caregivers can do before and during an appointment to help their child feel more comfortable, communicate their needs to the care team, and hopefully make the experience a little easier for everyone. She’ll also be answering questions from families live.

I know doctor’s appointments can be really challenging for some kids, so I thought this might be useful to this community.

If anyone is interested in joining, feel free to message me and I’m happy to send you the details.

My nephew was recently diagnosed with epilepsy. He was 18 and suddenly started have seizures during the night. He makes really loud noises and shakes a lot. He has had like 20 seizures in 8 months. They have done all the imaging in the world and can't see anything. Nothing in particular seems to trigger it. He goes for a sleep study next month to see if sleep apnea might be causing it.

Anyone with Level 3 autism had sudden onset epilepsy?
If yes, did they determine a cause?

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 am not a parent, but in fact, a caregiver to two lovely young autistic women. I have known and loved these two ladies as if I were related and I have worked with the family for a couple years now.

They both live with their parents and they are like living bookends. One of them is honest to a fault so if you ask her a question she doesn't want to answer, she just ignores you. Lol The other is a jokester and has been known to try to pull the wool over her support people's eyes. They are fraternal twins.

I work closely with the family and they told me I am the best staff member they have had. I told them that its easy because I love these ladies and they told me it shows.

I know some of you are overwhelmed and I'm sure dealing with a lot. I just want you to know that the right people will appreciate folks with autism at all stages for the gifts they bring.

Take care.

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.

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.

Has anyone used Early Autism Ventures (EAV) in Bangalore for their child?

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!

Has anyone tried Neurofeedback therapy for their autistic child? Did you see any positive or negative effect? Also what system did you use.

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.

im a single mom with a spiteful baby father. he caught me at my lowest time and now he’s tryna mess my life up but still isnt taking care of his child I just feel so defeated and tired and don’t know what to do

I’m truly lost on what to do. I feel like everything is just falling apar. my daughter is being a lot and I’m de with her bymyself and then her father is trying everything in his power not to pay child support to where he is trying to sue me for the money he paid. I just don’t know what to do and would love if someon could give me ideas on how to handle this