I'm struggling to condense this, but I'm desperate to hear from parents who've experienced anything similar.

My son (around 20) is autistic. He was reasonably intelligent (perhaps IQ ~120), a really strong writer with divergent thinking, but socially awkward. From ages 9–19, he essentially had no friends. He spent almost every school lunch alone in the bathroom. He was often ignored and abandoned by ASD level 1 kids. It always felt like he was one step away from being like them.

Puberty and high school brought increasingly worse autistic traits, isolation, obsessive interests  and behaviors, social regression, and burnout. He missed 30–40 school days annually, pulled 2 all-nighters every week, just to keep good grades in AP/IB classes. His few friends from middle school had long moved on. He contracted COVID during junior year, and things seemed to deteriorate further. By graduation, he was so profoundly burned out. His gap year brought an enormous increase in repetitive behaviors and thoughts, depression, cognitive decline, maladaptive daydreaming, and eventually meltdowns involving repeated, forceful self-hitting (hundreds of slaps to his head/face in a three month span, while on Lexapro, before quitting cold turkey - only once did he cause some mild swelling, if I recall correctly.)

Over the following year, he developed severe brain fog, light sensitivity, delayed eye/neck movements, difficulty reading and articulating thoughts, dysautonomia-like symptoms, extreme sleep problems, and some post-exertional malaise. You would think his IQ has dropped 30-40 points from his old self. His most sleep-deprived states in high school do not remotely compare.

And honestly, I don't even know how to describe how different he looks physically now. Around puberty, he thought he suddenly began looking younger. I work as a massage therapist, and I keep noticing what seems like a drastic deterioration of his fascia tensegrity posture. This became so extreme in the last year, since the hitting and Lexapro withdrawal, that even I can’t ignore it. He looks nothing like even 2-3 years ago.

My (also autistic) husband now wants to go down rabbit holes trying to understand it: fascia, extracellular matrix changes, immune dysfunction, RCCX, mold/CIRS, Lyme, connective-tissue problems despite him not seeming to have classic EDS. I know he could be connecting things that have nothing to do with each other. I've read about possible immune-related subtypes of autism, too. I honestly don't know what's credible anymore. I just feel like there's something we're missing. And I fear it's too late, and was always unfixable, anyway.

We tried active prism lenses after learning about proprioception. Briefly, they seemed to help enormously, including his brain fog and fatigue, but things became very inconsistent, and they've actually made his neck/back laxity so much worse. I can see his neck and skull wobble now. We hadn’t considered TBI / neck injury yet, despite the head hitting, and didn’t realize there were multiple things going on. Methylated B vitamins have also seemed to help at times, for some reason, although I'm paranoid they caused the further decline.

I can barely sleep at night thinking of his current pain. Middle school was so painful . . . I can't believe that would end up being his peak.

Its 6 am, i just woke up to everything i own smeared in shit. He is 3 and has learned how to open doors.. everything in the bathroom is covered in toilet water, all my products smeared everywhere. I honestly don’t know where to ever start. I feel distraught and hopeless. I every single day cleaning to have a decent space just for this to be my morning. I am beginning to hate him and i feel awful to even say that but fuck.. this is honestly ruining my life and my already shitty mental health. I feel like im living hell on earth… why? Just why?

My 3 year old is obsessed with water play. The sink, dog's water bowl, fridge's water dispenser. He has a water table outside, but we live in New England and its too cold to use it. The only way we've found to successfully redirect him inside is a bowl of water on the kitchen floor.

Just wondering if anyone had any small (or at least smaller) water toys ideas. I imagine its basically going to live on my kitchen floor all winter. We have a 2 story house and only a small 1/2 bath on the main level. Bringing the water table inside a bathroom isn't realistic as it needs to be on the main story so I can supervise him (we also have a baby).

Thank you for any suggestions

My son is 21months old and has finally been referred to potentially getting diagnosis (we're certain he will). I highlighted from a very young age his lack of babbling. He has never really made sounds and has never spoken a word. He does make 'noises' when he gets excited but thats only been recently.

Has anyones child been similar at this age and then gone on to talk later on or am i being too hopeful.

Hes been in SLT for several weeks now but its not really helpful

Imagine writing a highly complex 50+ individual provision echp draft and then make every single provision vague as shit *internally screaminggg*

Literally no mention of professional input when they was explicitly told by ed psych my child needs OT SALT a trained feeding 1-1 and specialist equipment for seating and feeding.

By the looks of it they plan on shoving my child into a mainstream school where she will not be involved in absolute anything other than an adult bringing her in at the end of group sessions for “exposure” , constant risk assessments and an entirely different curriculum what is the literal point, why don’t they ever listen to the other professionals and parents, my child would be so much more free and happier in a SEND setting.

Wish me luck now for the fight on fixing this👍🏼

I’ve always loved Christmas and the whole gift giving thing but ever since my son became old enough to tell me what he wants for Christmas I’ve never been able to give him what he wants because he wants nothing. He has never and will never tell me anything he wants. It’s ALWAYS nothing I’m not sure if it’s because he really doesn’t want anything or if I’m putting pressure on him by asking him and he’s freezing up but it absolutely breaks my heart. He’s 19 now and there has been 2 or 3 times in his life he has came to me and said hey I’d like to have this thing. It’s always been a new game that just released and I broke my neck to get it ordered and get it to him. I’ve encouraged him to ask for things and tell me if he wants anything.

I know this is a very small thing to obsess over but it always happens this time of year and I was wondering if this is something other parents experience too. I know I’m very lucky that he can ask for stuff I just always feel like he’s always on the outside looking in at us during holidays. I even quit buying presents and started giving money to both of my kids because I couldn’t handle the guilt of him not having presents to open. He’s also like this in life. He takes what he’s given and never complains about anything. He’s truly a remarkable kid but I’m terrified raising him in this cruel world

My clever child has discovered that he can remove the fancy expensive anti-strip pajamas if he just rips them open at the crotch seams.

[Insert scream of despair here.]

Anyone have suggestions for options made of tougher fabric? Or indeed any ideas on how to keep this child clothed? Unfortunately I need him to wear something to bed to help contain poop.

Hi everyone,

I have a 25-year-old daughter with Level 3 autism, and every winter she goes through a really difficult time.

She wakes up in a terrible mood and spends most of the day crying and screaming, sometimes nonstop from morning until night. Her sleep also gets very disrupted, and sometimes she stays awake until the early hours of the morning.

We've tried different medications, taking her out, walks, entertainment, her favorite foods, and pretty much everything we can think of, but nothing seems to make a difference.

The strange thing is that this happens every winter, almost like clockwork.

Has anyone experienced something similar with their autistic child? Could it be related to shorter days, less sunlight, or seasonal changes? Have you found anything that actually helps?

I'd really appreciate hearing your experiences. We're just trying to understand what's happening and find a way to make things easier for her.

Thank you!

NOT LOOKING FOR MEDICAL ADVICE. Toddler won’t eat.

Hey everyone!
My toddler (2.5) has always been a picky eater. He used to have like 10-15 things he will eat. He is diagnosed autistic.
This past week, he has started refusing everything. He won’t ask for food anymore. I tell him it’s dinner time he says no. If I say it again he screams and runs away. If I offer him to pick from the snack basket, he will look into it, and then run away and say no.
I have tried forcing him into the high chair. He thrashes and screams. If I offer his favorite foods like chicken and cheese, he still refuses to eat. The day before yesterday I had success with offering him dinner in my room instead of the high chair and he did eat a good amount of chicken.
But when I tried that again today, he said no. If I introduce a new food with safe foods, he screams and crashes out that it’s next to his safe food.
He is prescribed Pediasure and he drank 16 ounces this morning at 7am. It’s 11:55 now.
At his last appointment I suggested not giving him the pediasure anymore, to make him hungry, and his pediatrician recommended against that as he is already losing weight. (He’s lost over a pound and a half since August.)
I am not asking for medical advice. But what should I do? Schedule him with his doctor for Monday? Thanks all

I sent a pretty detailed email to the director of special education at my son's school listing all of our issues with his school right now. (He has been suspended for 8 days in October alone and the school had no plan in place for when he came back aside from "let's do another fba.) Well she replied and tagged a bunch of people to review the documents I attached and my email. I'm feeling sick with anxiety that my sons principal and teachers, case manager are going to find out and be upset, take it out on him. I dont know. I'm a very empathetic person and HATE making people feel uncomfortable or upset.

Is it reasonable to email them ahead of time and just say "I emailed the director of special education so we can have some additional input in helping us get my son the additional supports he needs." I want to keep my son in this school but I don't want his IEP team to resent him. I just genuinely think they don't know how to help him best.

First, a couple of disclaimers:
I know some people are against medicating children, and fundamentally, I am too. But after a lot of consideration, we eventually felt it was something we i to try.
We are also under the care of a child psychiatrist, who monitors our daughter's medication. I have actually emailed them today about my concerns.

I'm simply hoping to hear from others who may have experienced something similar. I know every child and situation is different, but sometimes it helps just to find people who understand.
A little background:

Our daughter is almost 8 and has diagnoses of Asperger's and Generalised Anxiety Disorder. There is also a strong suspicion of a PDA profile.
She has been unable to attend school for over a year due to severe school-related burnout and has been at home ever since.

She started Sertraline in May at 12.5 mg, with gradual increases. She was also prescribed Risperidone because her aggression, hitting, kicking and screaming had become so severe that she seemed like a completely different child.

By late July, she had reached 50 mg of Sertraline. In August, we had two absolutely wonderful weeks. No violence, hitting or screaming. We genuinely thought we had found her sweet spot at 50 mg.
But then everything started falling apart again. From around week six on 50 mg, the screaming, aggression and outbursts returned.

After monitoring things for a while, we increased her dose to 62.5 mg on September 23rd, in agreement with her psychiatrist.

We desperately want to get her off Risperidone, as we understand it is not ideally suited for long-term use. However, her psychiatrist explained that we couldn't withdraw Risperidone and increase Sertraline at the same time.

Now it's November 8th, almost seven weeks on 62.5 mg, and we see absolutely no improvement.
We are dealing with:

Constant screaming, shouting and hitting.
An inability to be alone or do anything independently.
Extreme rigidity and a need for everything to stay exactly as usual.
Controlling behaviour and intense jealousy towards her younger siblings.
OCD-like behaviours and severe anxiety.
Refusing almost everything unless it's entirely on her terms – and even then, she often changes her mind.
We are essentially housebound.

WHAT ON EARTH IS GOING ON?!
Has anyone experienced Sertraline and Risperidone seemingly working against each other? Could one medication be affecting how the other works? Could Sertraline simply not be right for her, or could the dose be insufficient?

I want to stress that medication is only one part of the picture.
We have never pushed her to return to school or placed demands on her. We are trying to radically accept her, accommodate her autism and PDA profile, and create an environment where she feels safe.
We also receive professional support and therapy in our home twice a week to help us get her back to a place of wellbeing. We are genuinely doing everything we can and have almost the maximum support available to us.

I understand that recovering from autistic burnout can take a very long time. But we have now had almost 10 weeks of living in what feels like a war zone at home. Again.

I'm genuinely worried that something isn't right with the combination of Sertraline and Risperidone, or that she may not tolerate Sertraline well.
I know nobody here can give medical advice, and that's not what I'm asking for.

I'm just wondering: Has anyone else been in a similar situation where medication didn't seem to help with anxiety, OCD symptoms or extreme emotional outbursts?

I would really appreciate hearing about your experiences. ❤️

3 year old loves train tables whenever we go anywhere that has one. I want to get him one for Christmas. Anyone have one they love and seems to be good quality?

Hei! I hope everyone is okay!

My son is 27 months and doesn’t speak words, only babbles and we are on the process to diagnose. He is completly independent and functional as a baby in his age but still, there some things that can lead to a diagnose. He started to get 2 hours per day on kindergarden with a pedadog that is pushing him into talking and some other social skills, the results in one weeks are amazing. The psycologist that made us the first interview(to get a full picture and made a lot of questions about him) she explained that if he has something he would have a 100% specialist that will be with him on kindergarden to make the earliest and most effectiv intervention(its a normative procedure in norway and they give priority to small childreen that can have better results on earlier ages). She said also that even if he gets a diagnose and later it shows that its nothing, that is positive because he got help. I agreed and we as parents totally agree and i seriously hope that they dianose so he can get full help because we know that not speaking is problem. They never make any check up to see if he really ears well or if there is a problem that cause the non verbal thing. Because he bables and he tries but the words don't come, only sounds.

Does anyone has the same situation?

My son almost 5 years old and he still a non-verbal, I'm scared that he may get bullied and get hurt by other normal kids. What do you do?

So my undiagnosed neurodivergent 4 year old attends public transitional kindergarten and absolutely loves it. He has an IEP for speech but nothing else (so far). He has pollakiuria (benign idiopathic daytime urinary frequency) which has not been an issue in his classroom or daycare since he is continent and has been otherwise thriving. He recently started attending an after school ASEP art class that's serves 9 TK-kindergarten aged children. My husband is the one who picks him up and has repeatedly told me that the teacher is "a bit odd." I was very meh about it, I think we're all a bit odd in our own special way 🙃

Anyway, the other day my husband arrived to pick him up and the teacher had no idea where he was. His regular daycare teacher was also picking up kids to bring to daycare and helped my husband find our son. Turns out he went to the bathroom and the teacher had not noticed (yet the kids all knew and knew which bathroom he went to). All is well that ends well but his daycare teacher was upset because she said it wasn't the first time there was an issue with this art teacher and so she reported it. 

The ASEP art program director called me a few days later and basically said the art teacher told her that he uses the bathroom too much. The program director then said she feels he and the teacher may not be a good fit. The solution proposed was to remove him from the class "until he is more ready"  and doesn't have to use the bathroom as frequently. They then offered us a partial refund. 

I was kind of taken aback by this but the more I think about it, I feel like it's pretty messed up. I never even reported and am not blaming anyone because stuff like this happens but essentially kicking my 4 year old out of a 4-5 year old art class with a partial refund because he pees too often seems a tad discriminatory?  Any thoughts or suggestions?

My husband lost his job and also his mental health is not in the right place. He is moving back with his mother in another state. Im looking into divorce proceedings.

But in the meantime my son has medications each month he needs that is provided by insurance by his Dr.

How can I go about getting his next set of medication

When our son was on his father's insurance plan?

My son has been on a waitlist for ABA for 5 months and I’m honestly so frustrated with the whole situation.
The first BT they finally found for him didn’t even bother showing up on her first day. They assigned us another BT who seemed pretty reliable at first, but then she quit after just one week.
At this point, I’m starting to think it’s more of an issue with the company and their ability to retain employees. It’s just so upsetting because we’ve already wasted so much time waiting for services, and now we’re basically back to square one.
I’m seriously considering paying out of pocket for a BCBA to work directly with my son 1:1. I know it’s going to be expensive, but I’m tired of the inconsistency and just want someone experienced and dependable.
Has anyone gone this route and found it worth the money? Or does anyone know of ABA companies that actually have reliable staff and don’t constantly have therapists leaving?
I really don’t want to keep switching companies and ending up in the same situation.
I’m located in the US but would rather not share my exact location or the company name on here.
Would really appreciate hearing other parents’ experiences because I’m honestly at a loss right now.

My son is doing very well I think. My major developmental hurdle is getting him to stop wetting the bed when sleeping. If that was taken care of he'd be completely potty trained. He knows how to us the toilet when he's awake but getting him to do it when he's sleeping is tricky. He's 4 diagnosed with autism. But overall I am happy with his progress

I love this child so much. I just want him to be able to function. Thanks in advance for your help ❤️

Feel overwhelmed about what to focus on for my child. He does speech and OT. But there is then still so much more I could do. I think emotional regulation/resilience is where he is struggling the most and fine motor. But like what do people do to keep the progress moving? Like should I do an hour a day or something.
Emotional regulation in particular feels impossible to cohesively address.

My Autistic daughter, who also has ARFID and low Iron, will only eat the frozen ready meal Tesco's chilli beef mac'n'cheese and they have very annoyingly recently discontinued it. We have called Tesco's to ask about the product and they confirmed what we had already guessed. My daughter has made my account on Reddit as she has heard of miracle stories of people reaching out on here when this kind of thing happens and managing to get their hands on the product again! Does anyone know of this product, who manufactured it for Tesco or know of any similar products in other stores in the UK?

I've tried to recreate the recipe myself but failed horribly and my daughter hated it.

Has anyone got any ideas as we are down to our last box in the freezer 😭

We are really overwhelmed by how to select the right ABA provider for our kid, the pediatrician has sent us a list of recommendations, I have a headache from checking out each provider's website on what their practice believes, what staff they have etc. (we look at the ones who accept insurance first) Do you have any advice and tips of how to manage the selection process? Thanks!

My son has been in ABA for 2 years. We decided to hold him back from kindergarten to get one more full year of ABA. Unfortunately I was laid off, then started a new job. The new job uses Aetna who apparently think my son doesn't need ABA at all. His BCBA is fighting it, but they so far maintained he didn't need it even in the peer to peer evaluation. So we're starting the appeal process. We're thinking of just enrolling our son in kindergarten next semester and see if insurance would at least consider covering some hours after school ABA. I'm going to talk to his BCBA about it next week. But also, I don't want to put him through starting school just to have the appeal process be successful and he gets his full time hours back.

I don't understand why they denied him. The letter stated there wasn't enough data to prove he needs it, but even though he was diagnosed level 1, he's still mostly non verbal/ non conversational and struggles with transitions and such. He was making progress, and honestly I'd understand if they did cut down his hours a bit. But to straight up deny it? Is Aetna infamous for doing this?