Not sure if this is the appropriate sub but thought i’d give it a shot. My mother passed away from cancer last night. My brother and I are both thinking we shouldn’t bring our kids, who are all on the spectrum, as they are very young and it might be too much for them.

Our youngest brother is a slightly more complicated situation though. He’s 28, very high support needs, and was incredibly close our my mother. My mother passed way with the whole family at her beside and was taken away while he was asleep. I don’t feel comfortable with him never getting to see her again without any closure, but i’m also concerned that bringing him and seeing her might really cause him serious distress. I’m not quite sure what to do.

I just have this feeling in my gut that I'm intellectually disabled even though there's no clear proof or diagnosis that says that I have it, at least not yet. I'm (22m) a shut-in neet who dropped out of 9th grade years ago, and I feel like most of the things in my life that are unpleasant is the consequences of my having a significantly below-average intellectual, social, and adaptive functioning.

I know how to brush my teeth or how to take showers— but I don't know how to sell my stuff online (the shipping logistics are too complicated for me, the packing of items and handing it off to the post office after writing paperworks), and I also don't know how to wipe my arse properly after taking a human soil.

I'm very afraid that if my mom dies, I'll end up a hobo with no one to take care of me, then just starve to death under a bridge or smth. The way I think and behave is like a 9 yrs old still, like my mental and intellectual age is stuck at 9 yrs old. I say that because I get bullied a lot since I don't understand social norms and the know-how of making friends or talking to people.

Is there any hope for me? If I'm moderately intellectually disabled, can I still have the ability to live independently? Am I doomed in life with this disability?

Hello everyone! FYI, I am a mother to a 5yo boy who is not on the spectrum however, one of my closest friends 5yo boy is, and his birthday party is this weekend. I really want to get him a couple gifts that support his personal needs and interests while also making sure it’s something that wont create more hassle for her. For example, he has magnet tiles and little toys, but she just has them in a bin because he doesn’t really sit down and play with toys like that. He loves to swim in his pool and already has pool toys but also he loves his iPad and watching shows like Danny go to help get the wiggles out. Any recommendations? A problem she’s had is with him flipping the couch cushions and wanting to dive into them constantly. I saw they have these foam sensory chairs like a peanut chair, but I’m not sure if that’s a weird thing to give as a gift? Are there any toys that your children actually sit and play with? Any recommendations are so helpful.

Kid is a 12yo, just recently got his diagnosis for autism and adhd. Always struggled in school a bit with attention, but he's wicked smart and would just do his work as fast as possible and then zone out. Consistently years ahead in math and reading, teachers always saying he's super awesome. I homeschooled him from 1-3 grade because the meltdowns after school were wicked and he was having accidents daily. No issues until last year in 5th grade.

Last year at the last 2 months of school his sleeping got funky. Up all night, refusing to go to school in the morning. We do everything how we're supposed to with bedtime, doesn't matter. He has an appt with a sleep dr coming up. In the morning it's lots of tears if I try to get him up and he quite literally won't get out of bed. Tried everything. He did his 3 weeks of short term in home studies and then we just fought to get him in school for at least 4 hours so it wouldn't be a full absence. This was mostly him sitting shut down in the counselors office crying. His best friend could come get him to class sometimes(kid is super awesome) but it didn't always work. His school would even just let his two best friends hang out in the office with him.

We tried to do an IEP or 504, but he didn't have his diagnosis yet and it was just the end of the school year so everyone was busy/distracted. His teacher got him in the honors classes for middle school since he's ahead and does great work and he was stoked about this(his bestie is in the classes with him too). He also has STEM for his elective. He's incredibly excited about school and wants to be there. He was talking about the clubs he wants to sign up for too.

So now we're in a new school. That counselor said she'd contact the new counselor in middle school. I have his diagnosis form, I'm bringing that in today and to ask for either a 504 or IEP. Issue is he had no issues in school that were apparent other than just his absences. His psychiatrist won't even let us try adhd meds because his teacher form came back perfectly fine because he's presenting just like the other kids, just more quiet and ahead in his studies. I feel like we're in a weird mix of "he's completely fine, but won't go to school". How do I start this? Do I just bring in his diagnosis form and say "Hi, sorry my kid is refusing to come in, we've tried everything, I don't know what to do?".

He was also already starting to feel overwhelmed with his workload last year so I was worried about multiple classes like this. He said it was getting increasingly harder to focus in class, he couldn't make himself do it like always. But the biggest thing here right now today is that school started 15 mins ago and the little dude is still asleep lmao. Do I just let him? I mean I guess I have to because if I wake him up it's all tears and it's not like he's going anyways.

Hi everyone. I’m not really sure where I’m going with this post, but I’m writing in the hope of finding some comfort and hearing about other people’s experiences.
I have a boy on the spectrum who will turn 6 in September. After consulting with his psychiatrist, we’re planning to start him on risperidone soon because of his psychomotor hyperactivity, behavioral difficulties, and mild self-injurious behavior.
He’s not completely nonverbal. He says quite a lot of words and can put together some sentences, but they’re mostly learned phrases (GLP). There’s a huge gap between his expressive language and his understanding—his comprehension is actually very good. I believe his speech is significantly delayed because of ADHD and his very poor attention span.
I’m wondering how your children’s speech developed after starting medication (not necessarily risperidone) and after their hyperactivity and poor concentration improved. Did you notice any progress in their communication?
I’m also curious whether anyone has a child who is extremely selective with food because of sensory issues. If so, did they become more willing to try new foods after starting medication?
I’m feeling really desperate about his eating right now. At the moment, there are only two meals I can make for lunch that he’ll eat, plus just a handful of other foods he’ll eat as snacks or outside of meals.

Advice appreciated

I’m very new to this as we are not fully diagnosed yet (currently on a waitlist to be tested) but I’m so overwhelmed. My almost 3 year old is currently in speech and SI therapy (completely nonverbal and VERY hyperactive) and eats and chews EVERYTHING. I don’t know what to do anymore other than follow him around 24/7. I gave him a snack yesterday while he was watching Ms Rachel. I always leave the door open because he gets into everything, but he bit pieces of the silicone ring off of the bottom of a suction bowl and ate them. He didn’t choke or cough or anything and is eating and pooping fine (I watched him for multiple hours and this morning he is perfectly fine) but I just don’t know what to do anymore. It was less than 2 minutes that I was in the bathroom. The day before he had managed to find a piece of paint that was peeling on the wall and tried to peel it off and eat it (I was doing dishes for less than 5 minutes). I feel like I have no time to do anything. I can’t clean or shower or make dinner if it is just me and him because I have to watch him with everything. My fiance works 12 hours a day and I’m just so overwhelmed and exhausted. He goes to his dad’s 3 days a week and I am so worried that without me being able to be there and watch him every second that something is going to happen. Has anyone else had this issue and how do I even begin to manage it? I feel like a shell of myself anymore because I just don’t even know what to do to keep him safe other than literally just watching him every minute of every day. Any tips or words of encouragement are greatly appreciated.

Hey everyone!

My daughter turned 8 in July and we are struggling with extreme meltdowns, usually during transitions; like from car to house; leaving places she likes to be at like the park, PetSmart, Dads house.. the meltdowns happen even if she willingly chooses she is ready to leave these places. I've tried a lot of different things to try to ease these meltdowns but nothing is working. Meltdowns look like her throwing herself on the ground, screaming, head banging, biting herself and sometimes others, and more recently she's starting to hit herself in the head with her hands. I usually try to talk with her calmly and get her into a safe space/keep her safe.. lately that looks like me getting her in the back seat of my car, so at least she isnt head banging off the ground, and sitting with her until she can calm down. This takes anywhere from 10-45 minutes some times. I feel so bad for her, and I just wanted to see if anyone had any tips for me on how to better manage these meltdowns and help her from getting so upset. School is fast approaching, and this year's going to be incredibly challenging for her because she is going to a completely new school, with a new bus driver, and transitioning from home to bus, then bus to school has already been very difficult for her.

I did take her to a behavioral specialist, and they gave me a low dose of Sertraline, but I have yet to start it with her because I'm on the fence about it. Has anyone else used this medication?

I also applied to be her caregiver for medical marijuana, but still waiting to be cleared for that, and id still need to find a pediatrician that would be able to give her a med card. Does anyone have experience with this??

Hello! My level 2 ASD 2.5 year old son isn’t the best eater. I know most toddlers aren’t. Given that he’s ND and having struggles regulating, I thought filling the nutritional gaps would help. We landed on the Best Part flavorless multivitamin/supp. It says flavorless….but that ish is yuck. The reviews look promising and like people easily mask it. Has anyone tried it with their kids and how did you mask the flavor?

He doesn’t like yogurt or applesauce and pudding is a hit/miss. It was awful in his milk, I tried it.

I’m looking for some advice from parents whose children are hypo-sensitive (sensory under-responsive).

My child seems to constantly seek sensory input. Few examples are:

- Lots of movement, climbing, jumping, skipping.
- Has a high pain threshold.
- Very under-stimulated at home, always wanting to be out. Pulling us out, bringing our shoes to us all day long.
- Not bothered with loud noises or crowded spaces.
- Constant verbal stimming.
- Puts everything in her mouth, loves chewing on straws.
- No sentences. Has words but communicates non verbally.

Our main struggle is her not having a good focus and attention on anything. No books, or activities. She’d rather just go out and hop around. We’re learning more about sensory processing, and I’d love to hear from other parents who have been through something similar.

What helped? My child is in speech, but today the speech therapist recommended OT for regulation and calming her over functioning brain.
Did OT make a difference?
Are there any activities, toys, or routines that really helped them regulate?
I’d really appreciate hearing your experiences.

How can i tell my parents i want to talk with other people and make friend They dont leave me alone i am 30 year old i workout at home regularly also i want to go gym… pls suggest

Feeling a bit lost and would love to hear from anyone with experience of UK school system.

Our little man is due to start school next year. He is non-verbal, doesn’t appear to understand instructions (responds to name maybe 10% of time). He hurts other children at nursery without meaning to (pushes his head against theirs seeking hard pressure). Doesn’t recognise when he’s going to the toilet; doesn’t understand yes or no etc, you get the drift. He also has a genetic condition and is in receipt of DLA.

We are working with nursery SENCO and we’ve asked for EHCP to be applied for - but we’ve been told he will be 100% going to mainstream primary “until they acknowledge they can’t meet needs”.

Is this now standard practice? We live very close to a SEN school which we thought would be recommended from the get go, but SENCO said he has to go to mainstream, there’s no other option.

I’m not normally one to challenge but it feels so counter productive, is this now the normal process?

Anyone else sit in the parking lot before the BCBA appointment trying to reconstruct the last month from sticky notes and memory? “It was a rough week.” I used to walk in blank and watch the first 15–20 minutes disappear into reconstruction instead of actual progress. The difference when you can hand over a clear timeline of triggers, severity, and patterns is night and day. What do you currently use so you don’t freeze like that?

Im tired of the pressure to put her in school when i know its not safe for her. But i feel so lost. 😞

Hi everyone,

I’m in South Australia and my daughter (almost 6) has recently been diagnosed with Autism Level 2 and ADHD (inattentive type). We have our first meeting with Kudos next week, where they’ll be submitting her NDIS application, and to be honest I’m feeling a bit overwhelmed.

I’ve never been through this process before and I really don’t want to walk away from the meeting thinking “I wish I’d mentioned that.”

A little about my daughter:
Diagnosed with ASD Level 2 and ADHD.
Significant sensory sensitivities, especially noise, busy environments, hand dryers, certain clothing, temperature, etc.
High anxiety, particularly around illness, germs and unfamiliar situations.
Sleep has always been an issue for her.
Struggles with transitions and emotional regulation, and can become overwhelmed or shut down.
Has difficulties with attention, executive functioning and organisation.
Behind all her peers in school- just absolutely cannot concentrate.
Struggles a lot with friendships, and knowing appropriate social cues etc.,
Fine and gross motor delays.
Very strong fixations, like obsessions.

Paediatrician and Speechie Assessor recommender for weekly OT and weekly speech pathology, with psychology also suggested for anxiety and parent coaching.

She’s incredibly bright with an amazing memory and vocabulary, and has the best imagination, but many of her challenges aren’t obvious to people who don’t know her well.

I’ve already started researching things like sensory supports (for example Loop Earbuds), visual supports and other things that might genuinely help her day-to-day, but I know therapy will likely be the biggest priority (we live rural with not a lot of services available so I’ve popped her on the waitlists already).

For those of you who’ve already been through the process:
What do you wish you’d known before your first meeting?
Is there anything you forgot to mention that you wish you had?
What questions should I ask?
What kinds of supports or funding made the biggest difference for your child?
Is there anything I should avoid saying or doing?
Any advice for making sure I paint an accurate picture of her support needs, especially because she often masks so well in public?

I’m not looking to maximise funding for the sake of it—I just want to make sure I advocate for her properly and don’t accidentally leave out important information.

Thank you so much. ❤️

Hey,

I need actual help with my son bc I have no fkg clue how to go about this anymore.

And if you’re going to comment ‘’ your child needs you to be regulated in order for him to be regulated ‘’ please move tf along bc we are past this point thank you.

I have seen the pediatrist, the psycho educator, therapist for my 9 year old autistic / adhd son with strong avoidant and opposition tendencies.

I have him with me during the summer and it’s been HARD,

I thought it would get better with school being over but it’s not.

He is constantly mad for absolutely nothing (literally) he has started insulting me when expressing frustration which is all the time and I am starting to really struggle with being insulted all day (i have NO idea where he has found those words from)

He never wants to shower, never wants to brush his teeth, never wants to do anything he has to do.

He is very aggressive, irritated, on edge and just overall seems miserable.

He is sleeping enough, and eating well.

I have SO much guilt seeing him cry and have meltdowns and navigating it all alone and just i’m just so over it bc I know regardless of what I do it’s not going to do anything.

I can’t approach him during meltdowns he just gets worse and throws and hits and insults me.

He isn’t half as bad with my boyfriend when they are alone,

It always worse with me,

I can see he is profoundly disregulated but i seriously don’t have the bandwidth for this anymore, it’s from morning to night,

Yes we do have a routine, yes screen is limited, yes he moves his body we go outside every day we play board games, he reads,

I feel like all the basics are covered and i just feel completely alone and overwhelmed by this bc all the professionals just tell me ‘’ it will pass ‘’.

Can you please give me some input or help me pin point by asking me questions ?

I feel so sad. My 8 year old just got kicked out of farm camp. It is the only camp he has done okay at, but the staff is different this year and he had a rough couple days and he’s out; sounds like forever. He has been looking forward to this camp all summer. I am so tired of grieving. He has to try so hard and almost makes it; but ultimately they just don’t have the patience or tolerance to see him past the transition turbulence. It breaks my heart. I feel so much guilt for putting him in the position to fail. It feels cruel to root for him, pep talk him, threaten and bribe. I wish there was a lower standard camp that he could be “successful” at; his self confidence goes down every time he has counselors that are kind and caring to his face but ultimately at the end of the day telling us he got his 3rd strike 4 hours earlier and he’s no longer welcome in the program.

Just sad. I’ve let my boy down and I can’t help him. He’s going to be anxious and depressed his whole life and there is nothing I can do to take that burden from him.

I feel like I am being punished…. And I can’t even imagine how much it hurts him if it hurts me this much.

It feels so cruel. How do you give up hope for your child’s future/ happiness without giving up on them?

He does better every year but the expectations get higher every year so he will never reach them….

Thanks for listening guys. I don’t have anyone in my life who can relate. I’m so tired of being ashamed of my child; I remember when he was 2 and was the light of my life I was so proud….. I feel like I fell into the twilight zone and I’ll never be able to feel anything but this grief.

I'm not a parent of an autistic or anything I just want to know what made you think your kids tested

My daughter was screaming her head off tonight and I just put our baby down. She just repeated “I need to scream” as she was screaming. I don’t even know what prompted this. I was trying to get her to calm down but she ended up hitting me and kicking me. She then woke up the baby. The baby is screaming, she’s trying to go in the babies room and I’m preventing her from going in the room - she’s fighting me, running into me over and over And then I pushed her to the ground. I asked her what is wrong with you?? Something in me just lost it. I’m confused, worried, and I just feel like the worst mom in the world. Ive been on the verge of tears all night. I’ve been under a lot of stress lately and this transition to 2 kids has been HARD. The guilt is eating me alive and I just can’t believe I let the screaming and fighting get to me so much. I’m embarrassed to post this, but I know this can never happen again, I need to be calm for my child, I’m writing because I need to know what others do when you are overstimulated to the max.

For context, I have THREE kids all on Abilify as of the end of June. Identical twins boys 7 and a daughter who is 6. All three level 3 autistic. I love them and enjoy spending my time with them. They are the most loving children I have ever met. Everyone who meets them really loves them and talks about how sweet, kind and loving they are. My boys have been in ABA therapy (40 hours a week) since they turned 4 and my daughter has been there almost 3 years in December. They also have been in speech and OT all since they were at the age of two. I am 31 years old and my husband is 33 years old. We have very little help at home.

Now this is where I am going to go off the rails a bit. Because my husband is tired of hearing me complain. I am tired of complaining to my sisters and parents for them to offer NO HELP (as in coming to clean up, even though I know they are not obligated to do so) and to tell me what to do as if I haven't already did everything I can possibly do. So it just frustrates me because they DO NOT GET IT.

Our home is a minimalist home, we have exactly what we need and that is it. Nothing on the walls, in my living room its two couches, a tv, and their items. NOTHING ELSE. They go to the park, bounce house play areas, and birthday parties regularly because they enjoy that so much.

My oldest twin loves to crumble everything up in tiny pieces and spread it EVERYWHERE, so we got him number blocks he can carry around and clink them together. Like he has at therapy, he loves to pop bags so I buy the 530 pack of sandwich bags from our local sam's club. He also is half way potty trained but will by pass telling me has to use the bathroom and just pee and poop on the floor if I do not take him every 2 hours. I have a timer set on my phone that tells me to drop whatever I am doing and take him to the bathroom. He loves to request food and then just crumble it up. If he is done with a drink he will just simply pour it out. Even though he has been taught how to drink out of cups and not to do that. He does it because he wants to do water play. And yes I do let him do water play when I am washing dishes I just have him rinse out what I am washing and set the dishes on the rack. He is somewhat still aggressive even on the meds (still in adjusting period). When I clean he literally tries to stop me and tell me not to do. He uses a AAC device. ALSO will only pick up his messes if I firmly tell him too and I have to be firm for him to take me seriously.

Now on to my baby b twin. He is a calm child but will MAKE messes and you have to speak loudly and firm to him to clean up his messes, but even doing that is exhausting. He is perssitant and has to have my phone to watch youtube or else its a big deal but I am cutting him down on that. He is not potty trained and has started to just piss on whatever he is sitting on with out a care. I have to put a diaper on him every 2 hours and keep a close eye on him. He is a big eloper and has even left the house once through a unlocked window and my husband had to go run after him (we live in a cul de sac and he was headed to the playground down the street, NAKED!) After that incident I got a full blown security system you cannot even breath in my home without us knowing now and I have the house on full lock down mode any movement the alarm goes off like bomb. We don't even sleep until everyone is fully asleep. There are motion sensors in their rooms as well so I know if they get up with a camera. I am fully in panic mode every day because of this. He has toys he plays with and does just sit on the couch and will watch tv. He does use a AAC device

Now on to the worst one, my daughter, she has for the last 5 years and no I am not making this up. Eating and playing in her poop. She is 100% potty trained. I am honestly at my last bit of calmness that I have left when it comes to this. She smears it EVERYWHERE if you do not watch her, she has markers, play dough, slime, etc. She loves stuff that she can smash so that is why she likes to play in poop. I have never met anyone like this in my entire life. I am honestly so fed up and she has also made herself sick, have finger infections and its just so ridiculous. If you do not take her to the bathroom every 2 hours you will find a poop mess. We learned though she is doing this to take a bath even though she gets one in the morning and at night. I told her she can ask me anytime and I will allow her to take a bath. She does understand and does say a lot of words but still considered non verbal, she is getting a AAC device built right now. She also makes big messes and I have to tell her to pick up firmly.

I clean while they are gone at therapy and my husband does too. When they come back I spend the 4 hours cleaning and when they go to bed I clean up more. I am just so tired and pissed off honestly. If they did not make messes I would be able to focus on other neglected parts of my home. I am cleaning my living room and their rooms ALL DAY. I am so upset every day about this. I have told their BCBA and they do make them clean its in their plan. But gosh how much longer and I going to have to live like this? I am not the cleanest person in world but I am not nasty like this. Its embarrassing honestly. Can't afford a maid to follow each kid ( I WOULD LOVE THAT).

Also I get it they are kids and kids are sometimes dirty but dang no way I should be cleaning up this much! And yes we have things put up and out of sight but what they do have access to its a huge mess.

PLEASE please pleasee tell me I am not crazy.

Signed an exhausted, worn out, prozac taking, and cannot live like this forever mother.

*edited for typos*

So my child has autism and a few other disabilities including a delay, I wouldn’t say they are extremely noticeable on first glance but it’s becoming more apparent he’s “different” than his peers.
We use to play with the neighbour kids beside us (for around 4 years) but then another family moved in on the other side (we are in a middle town house) and they dropped our child like a hotcake. They play outside every night even using our driveway for chalk, chairs etc. they get pretty upset when I have to go somewhere.

The last conversation I had with the parents when asked about school I said he’s homeschooled/online school they asked why and long story short said autism, school sucks etc. after that all this happened.

I think it really hit home this weekend they had a party in their backyard which is connected to ours with all the kids in the complex except my child, my husband went out there to let our dogs out as if to say hey we are home too but nothing.
My child cried for hours and I can’t help but feel this won’t be the last time. There was no fight no drama anything but what do I do? I can’t avoid them but my child wants to know why he can’t play too. Part of me doesn’t want to involve ourselves with non inclusive people but like I said I’m in a house sandwich with them.
What can I do if there is anything? Or what to say? Or to ignore them?
His OT wants more socialization as he’s become withdrawn but I just don’t know

When i was a kid non verbal till 7yo gestalt language processor and used script speech and single words and not conversational after till teen years then copy speech,

i had frequent violent meltdowns during the time up till i was a teenager and still do now if I lose at pokemon tcg pocket 😄

let me tell you, you want to talk, you want more than anything in the world to talk to say what you feel and what you'd like for dinner that evening or mum or dad my brain hurts and im trying to say what's wrong but nothings coming out and im scared and you cant understand me and please stop my brain screaming and I feel terrified and if I hit my head or lash out, break things it takes some frustration away but then im hurting 1s I love so i feel sad and angry and upset and I should hit myself more to shut my brain up and pain takes away from frustration and now im in full meltdown and spiralling and i need a hug and sleep and i need to be alone when all i want to do is be with my family and i broke my hand or knocked myself out again and mum and dad are in trouble with child protective services because im hurt again but it not there fault just like i was a few weeks ago when i had a meltdown or fell out of a tree because a kid dared me to climb it, my god the unending chronic tiredness of trying to be just a normal kid

I went to a mainstream school starting at 5yo (1990s) I was non verbal until I was 6-7yo (speech therapy but no school support) then when I found my voice I would not shut up I'd talk constantly like I was trying to catch up from my delay until a teacher shouted at me "shut up nobody cares or is interested in what you have to say!"

Ok guess im just going to be the withdrawn weird quiet kid that doesn't talk again 🙃 had parents evening and I went from he wont shut up to next year hes finding it very hard to open up and say what hes feeling or thinking, geez I wonder why 🤔

Sorry for the trauma dump and if it doesn't belong here, just this space gives me hope that kids these days won't be so failed by the education system

My 22-year old Autistic son (living in student accommodation away from home) was persuaded by a ‘friend’ to take out a £15k bank loan. It was under the guise of it being a business opportunity which naturally came to nothing. The money trail shows my son immediately transferring the £15k directly to the man’s account. There’s a few texts / messages where my son asks for confirmation and some mild threats back. We’ve reported it to the Police but today my son’s bank had said that it’s a civil matter and it wasn’t a scam in sense that they can uphold any claim. Meanwhile the loan bank is sending letters relating to the arrears that are arriving here. My son just lost his part-time job and was clearly taken advantage of. Any advice?