I was diagnosed with autism at the age of 5 which meant that the term Asperger's was still used so me and my mom have been using that term as long as I could remember. But thats not important to my situation. I often feel as though I make my mom and my families life worse simply by existing. I know that this is a self imposed feeling and has never directly been stated that i am making their lives worse but i cant shake the feeling that i am. I tend to think of myself as an outcast or someone to be ashamed of because of the town im growing up in and the things kids at school have said to me. I constantly get made fun of and people scream as if they were horrified by me. and i simply dont get it. im an average looking kid and pretty well mannered. Up until very recently school equaled to torture and humiliation. We started online school recently and I feel as though its helping but my mom thinks otherwise. She perceives the morning as a constant fight/back and forth. however i think that nothing is wrong and that im doing relatively well for what i can handle. but recently ive been working on things nonstop because grades are "important". And it has really taken a strain on my mental health. I just wish my mom understood more or let me know in ways that i understand to show that she understands.

Have your doctors told you the youngest age that your child can start on sleep medicine? My 10 month old will probably be diagnosed (he’s already under evaluation, they say once he can walk then they can diagnose him but until then it’s just “global developmental delay”). Anyway, he won’t sleep more than 6 hours a night, in two hour chunks at a time. I can’t live like this forever, I’ve had to hire a daytime nanny just so I can nap and recover from the rough nights. How much longer will it be until he can take sleep medicine and we can all get a good night’s sleep again? (He is currently scheduled for a sleep study and I will ask the doctors too but just wondering in the meantime.)

Hi there,

Every few months my 5 year old son goes a bit "out of sorts" for a few days/couple of weeks- no temp, no sickness, not in pain, basically nothing to really "put my finger on" but he'll be -

Really tired, although sleep gets even more erratic during these times.

Loss of appetite, even his favourite foods

Less enthusiasm for playing etc

Really sensitive, even more than usual- emotionally and sensory wise.

Like today he's seemed a bit more himself after a better night's sleep following 2 nights of constant wake ups etc. This morning he was brighter, but still not eaten anything. We played a bit and chatted but then when getting dressed he got really upset over his socks not being "right" and took himself under his duvet with his teddies and a nightlight and just made sad noises until he fell back asleep at 11.30?! I'm just letting him rest because he obviously needs it.

For full information he's not diagnosed yet due to waiting lists (we're in the UK) but has been "on the pathway" since 2.5. Health Visitor, GP, paediatrition and his teachers (nursery previously) all agree ", there's something there" and are fully supportive in getting him assessed and supporting him. He loves school (started reception in September)and is doing well, learning and thriving on the routine every day but I think it does wear him out in some ways too.

We're just letting him rest this weekend, no plans just playing at home, drawing, TV, garden time and maybe the park down the road if he's up to it. Hoping he's ok next week then it's the Easter holidays. We're going away for a bit then and he's really excited (maybe too excited?!) so just hoping he's more himself by then.

Does anyone else have any similar experience? I've read about autistic burnout but whilst it ticks many of the boxes I'm not sure it's that extreme?

Does anyone have a recommendation on a kids book about moving (houses) that is good for an autistic child? TIA

TW $uicidal Ideation:

Look, 10 years I have been a trooper for my son. I wasn't diagnosed with ASD until years after each of my 3 son's were diagnosed. I didnt know. With everything going on right now politically, financially and socially, I am super overwhelmed. We have zero support from family.

My son's provider (bless her heart) continues to advocate for my son - trying different medications, etc. We have done ABA, OT, he has an IEP, does counseling at school. I have taken him to a naturopath and dietitian, etc. I've desperately seeked intervention at our local children's hospital. Always on a waitlist for this or that, but never finding meaningful change for this child.

Holy shit - nothing helps! Literally nothing. Not for DMDD. My other boys are easier to manage - but my oldest is so violent and explosive. It's put our whole family at risk over and over. Daily crying and screaming. Waking up in the middle of the night, to wake up the whole family, etc.

What I have fought for years now is wanting to give up on being a mother. To give up being alive. Nothing gets better. My partner and I have had our differences and at times and he will take this it out on me. There is only so much one person can take. I think sometimes that if I truly gave up they might even be better off.

I recognize what to do if I make a plan, and I know how to get acute help! What I don't have is long term help, or even a trusted family member to temporarily step in. I feel like no one loves us - my youngest doesn't even recognize his grandma.

I wish my life were different. I am filled with regret.

Hello, I am a Psychology Masters student at Durham University and I am looking for autistic parents (formal diagnosis or self-identified) to take part in my survey. I am investigating the factors that contribute to burnout among autistic parents. The survey should take around 20 minutes to complete. Please take part/ share if you have capacity, thank you!

https://durhamuniversity.qualtrics.com/jfe/form/SV_0kpjKAxZ9Qswmxw

I am working on getting diagnosed myself, but my son is diagnosed for ASD. Over the last few weeks, I feel like my sensitivity to his loud behavior and screaming from over stimulation, which makes me over stimulated. I have been feeling much less patient with him lately.

Are there any resources or audio books for autistic parents for parenting autistic children? I'm really struggling and I hate getting so angry with him. I absolutely love my special boy but I feel like I am damaging our relationship by getting so mad with him on the daily.

Hi 

My name is Ivanna and I am a student at the Inholland University of Applied Sciences. I am studying IMI Lab (Music Industry) and I am currently conducting a personal research project on the impact of music therapy for people with autism.

As part of this research, I am looking to gain insight from parents whose children are receiving music therapy, such as yourself, who can share valuable perspectives on this important topic.

I would like to invite you to take part in a short questionnaire that will take up to 10 minutes to complete.

I believe that your opinion would be extremely useful for my research and may help to improve the overall understanding of the role of music therapy in supporting children with autism. 

I would be very grateful for your responses to the questionnaire

https://forms.gle/TVaQk5JWhYPL8LL56

Edit:

Thank you everyone for taking the time to reply and share your experiences, they were very helpful for us and I'll try to find some group therapy or mentors for my son, speaking to a new therapist on Friday and hopefully he will have effective suggestions.

Hi, my son is 17 this year. He was diagnosed with ASD (they told us it was Asperger's) at 13. He tends to get very self-destructive especially when he feels he has failed at something.

When everything is going well all is fine but once he feels he's failed he will spiral very quickly. For example if he loves playing a certain game and he loses that game once (due to a recurring mistake he condemns himself for) he will get very destructive and then spiral and say he is dropping out of school, even though school doesn't have any direct link to that game.

I'm here because he has started talking a lot about dying and says he is not compatible with life because of his personality. He feels he is a crappy person who doesn't deserve to live and nothing we say helps. Unfortunately he did not have good experiences with therapy when he was younger and feels nothing will help.

He has begun to eat extremely unhealthily (his weight went up a lot during COVID and we have been struggling since) on purpose, tried to smoke, tried to sabotage as many parts of his life as possible.

He is also fixated on negative childhood experiences and has magnified them to the point where he thinks he had a really bad childhood with almost no good occurrences. This comes up a lot and he anger ruminates and it triggers him and it can get dangerous. We have sincerely apologised and acknowledged our failings but he is still very fixated.

Seeking advice from other parents and wondering what we can do, how do we help our child. Thank you so much.

My son is about to be 7 and he is nonverbal. For some reason he flinches at our every movement. He always has. We of course do not hit him at all. He is also extremely ticklish which also makes him flinch at movement. He loves being tickled though. We have to approach him veeybslowly with anything..hugs, giving him his food etc. My concern here is, we are moving to another state/new school. So far he has been homeschooled. I'm SO afraid his new teachers are going to call CPS or something on us because he flinches so hard. I know my best bet is to communicate this with his teachers but will they even believe me? My son is very loved, we would never hit him or give him any reasons to flinch.

Like hey, don’t take a bite from every single slice of pizza. He’ll respond with growling or grunting or some form of being upset / overwhelmed.

If I try to explain myself further like finish the full slice of pizza before starting another one. Then he thinks he’s in trouble and needs to take action and will try to finish the slice of pizza all at once until he’s gagging.

Is there a term for this kind of reaction / behaviour? Would love to be able to google how to speak to my child in this kind of situation, but I don’t know what to search for.

Thanks

Background: I have a 6 year old level 2 son. He’s VERY affectionate with mom/dad/family/teachers/friends. He’s so sweet, loves hugs and kisses and tickles and all that. He doesn’t like animals- dogs, cats, cows, horses, bunnies, you name it.

5 months ago his baby brother was born. He wasn’t even standoffish and he’s still not. He’ll say hi when asked, give him a little kiss on the head, or fist bumps (all when prompted or “asked” to). But it’s as if his baby brother isn’t even there.

Sometimes when he cries he will run and get baby a bottle or when he’s getting changed he will grab baby a red onesie he wants him to always wear.

Now that baby is moving more and babbling more, it’s as if he’s a bug to my son. I mean, the baby will get near him and he acts as if he’s a bumble bee or a horse. He’s not scared but he does NOT want any part of his baby brother.

Does this get better? I know it’s only been 5 months but at the same time, it’s been 5 months

Any tips, tricks, or advice? We never force kisses or fist bumps but we do try to include baby. For example, if my oldest does something worth praising and dad says “good job! Fist bump!” I will chime in and say “good job! Fist bump! Baby says good job! Fist bump” and he will with no problem. Same for goodnight kisses, kiss for mom, dad, and baby. Sometimes he doesn’t want to and obviously we never force him or ask more than once. But I’d say 7/10 times or more he’s willing.

Preface that I hope I wrote this in a coherent manner because I’m very much sleep deprived.

I’m losing my mind here. My almost 8 yr old can’t be left in alone in a room. He can’t go to the basement or play outside independently. He won’t play unless someone is watching him or in the same room. I can’t even go to the bathroom without him freaking out.

I need him to be able to walk downstairs to get a new shirt or find his backpack, or just be okay in a room alone. I have two other kids on the spectrum and he’s the oldest.

Anyone have any methods that worked? Any special therapists or therapy that might be beneficial? TIA

I feel like my kid is going to therapy, and the psychologist is doing something..., but I have no real idea what’s going on. I’m not trying to hover or interfere, but I also feel like I’m in the dark. I don’t know what’s being worked on, what progress (if any) is being made, or how I’m supposed to support it at home, if at all.

Is that normal? Is it supposed to feel this disconnected?

Shouldn’t there be some kind of communication loop between the psychologist and the parent? Like, not full session transcripts, obviously, but something to help me understand what the goals are or what the focus is right now?

I’m just wondering: What does a healthy, productive parent-psychologist relationship even look like when a kid is in therapy? Am I expecting too much? Not doing enough on my end? I just don’t want to be part of the problem or accidentally make things worse by guessing.

My 12-year-old, who is on the lower end of the Autism spectrum and also has severe ADHD, lost a friend (that he had a huge crush on and that had a huge crush on him) this year because she told him he's "annoying." His whole thing is to tell jokes over and over and over whether you've heard them or not. He also tries to make puns out of EVERYTHING, whether it makes sense, is funny, or not. His friend straight up told him why she didn't want to hang around him, and we told him he could work on not doing that, but he has decided not to.

We've been trying to curb this, but y'all know how it is.

He came home the other day and told us his friend, S, was "being annoying." When questioned about it, he told us that S "always tries to be funny, and nothing he says is funny."

We were like...you know you do that, too, right? And he admitted he did.

S's mother reached out to me this week to see if we could get the kids together. Mine happens to be out of town, but I'm wondering if anyone, first off, has experience with this kind of "hypocrisy" (which I realize is a strong word, but I couldn't think of a better one), and secondly, has any suggestions for how to keep this friendship going despite S being "annoying", doing the same thing my kid does.

(There is nothing else wrong with their relationship, no falling out or anything. He just decided S was annoying.)

Just for context he is waiting to be evaluated with the IU.

My son is extremely emotional. He seems younger emotionally than kids his age. His speech is very hard to understand, he talks constantly but I (mom) only understand him maybe 60% of the time. Strangers will understand maybe 30%.

He is hyper fixated on names. If you say you’re so silly! He’ll scream NO I’m Tommy. I have to explain to him it’s a joke. If you say hey buddy how are you he will scream no I’m Tommy. Only call me Tommy, Thomas, or bubbie. He will ask strangers or new people what their name is over and over again. He’ll ask people who he knows their names what their names are. He talks about names frequently.

He has many 1-20 minute meltdowns everyday. I’d say average 10 a day. They are for minor things, he will scream if I get in the shower because he wanted me to stay in my room. Any type of redirection can lead to a tantrum, even just telling him to be careful. He responds to everything saying why. He has had a tantrum because I turned on a red light and you’re not supposed to drive during red lights. (Obviously you can turn on red but he doesn’t understand that).

He complains everything is to loud. Even when it’s not loud at all. He is very picky about different foods. He hates when my hair is wet and touches him. He will scream the whole time you wash his face/hair. But he loves water/bath. Extreme reactions when getting slightly hurt, yelling and screaming. He has to have his bedtime routine the same way, (same two books, same three songs) he has the same commentary for each book and song every time. He asks for the same breakfast everyday from me, he asks for the same breakfast from his step father every weekend (different from me).

He is constantly moving, climbing, jumping, talking, basically bouncing off the walls. He has extreme reactions to people leaving. If someone is over the house when they leave he will scream, yell and throw a tantrum. Same with any type of transitions. He is very social and loves people. He loves playing with other kids, he screams when he doesn’t get his way while playing and will slap or push them. He does odd eye movements out of the side of his eyes and rolls his head around. This is fairly new behavior. He sometimes lines his toys up. He does pretend play and functionally plays with toys. He needs to be pushed to play independently. He likes to watch others play with toys. Sometimes he refuses to change clothes because likes the ones he’s wearing. Especially if it’s a character he likes.

He understands emotions, he will ask if you’re okay, or if you’re sad. He will comfort you if you’re upset. He’s extremely loving and affectionate. He was potty trained at 3.5. I always felt he was speech delayed, but the doctors never said anything. He was slow to talk. Now he talks but I wouldn’t necessarily say you can have a full conversation with him. He’s just to hard to understand. He seems okay with other kids though they don’t have a hard time understanding him or it doesn’t hinder them. He responds to his name and makes eye contact. He doesn’t follow you pointing to something at all. He will say he doesn’t know where something is even if you point directly at it. I’m not sure if he finds it amusing or actually does not know. If you tell him to stop he will ignore you and continue the behavior until you physically stop him. He doesn’t listen to anything and cannot follow two step directions. If you ask him to put shoes on it, it takes forever with him being off task and trying to get you to do it for him. He cannot do most anything independently he will whine or yell, everything is a production. He just becomes so distracted.

He does wave and high five and start conversations with anyone. As an infant he started headbanging at 6 months until 3. He would do it to the point he was bruised badly. He has also clawed his face in anger and would punch himself. When he turned three this stopped. Since turning three it’s only happened a handful of times. His tantrums now consist of screaming yelling hitting throwing toys slamming doors. He just gets upset over everything. He parrots back every redirection back to me.

I’m just so at a loss on how to help him. He is so emotional and I’m just at a loss somedays on what to do with him.

My son is 5.5 and has made some AMAZING progress through OT. Unfortunately his OT switched to a different practice that is too far for us to commute to. We decided to take a break for a bit and just let him be a kid, but I do still see how his hypotonia impacts his ability to write, chew, etc.

Can anyone with older kids advise if this seems to get better with time? I don't want him to have to do intensive OT, but compared to his NT brother he just looks.....soft? like his body is clearly built softer than a typical kid's. I'm not sure if that makes sense, I'm just trying to make a game plan to help make sure he is a healthy weight and strong enough to be able to write, draw, etc whatever he wants to do in life.

I am so beyond stressed. We’re waiting on an eval (and fun, found out yesterday they never send the referral in back in November. Back to that), he’s in speech therapy, I just asked for a referral to OT. He has hyperlexia, it’s a good indicator that he’s ND in some way.

He can’t handle transitions. This week he just flipped at his daycare. He laughs with us, gets there and plays, then becomes a terror for them (and god I know I shouldn’t say this but he is). Biting his peers, hitting and kicking his teachers. He can’t handle transitions at all anymore, he’s so heightened and sensitive to this. He always was but it’s gotten so bad, and idk if they just didn’t tell me sooner but they said it’s been getting worse and this is the first I heard. He needed 3/4 early pick ups this week. How do either of us work full time jobs?!? We certainly cannot be on one income. He’s supposed to start preschool next year, then what do we even do.

I am feeling so defeated right now. We’re constantly doing meetings with his EI, talking extensively about ideas to help, nonstop figuring it out. Their patience is wearing thin, I can’t blame them. He can’t go around hurting people. He doesn’t have much interactive language so he can’t really communicate his frustrations.

I have a unique occupational therapy practice where we only work with children and adults on the spectrum (ages 13 and older) with transitioning to adulthood. We work on employment skills, money management, daily chores, grocery shopping. Anything adult related. (Heck, I helped a client study for and pass his learner's permit for driving and I am a shear danger on the road. )

I have a completely anonymous survey to help me develop more resources for parents, but I can't post it on reddit. So I would love to hear from parents with teens about what keeps them up at night. What are your hopes and dreams for your teen or young adult with autism? What resources do you wish you had? If you could wave a magic wand and have any resource (person, book, video, community, shoulder to cry on) at your fingertips to help your child on the journey to adulthood, what would it be? Was there a person or service that really helped you and your child in this journey?

Thank you so much for your thoughts and ideas. And if any of you would like to talk to me about this, I would love to just listen and hear what you are wishing for and what you are facing.

My 16 year old daughter is very high functioning but still struggles to clean herself properly after using the bathroom. She loves to be girly, put on makeup, do her hair, etc but will stink because she doesn’t wipe enough. I have installed a bidet and talked to her about this multiple times. She is embarrassed about it, and I don’t want her to be teased, but it continues to be an issue. Kind advice appreciated.

Resolved ✅️, for now lol.

Our son is about to be 4, we are aware that he is actively growing out of naps due to him getting older.......but here's the thing, he still absolutely needs them. Autistic child and no nap has thus far been a recipe for disaster.

He is wildly crabby and aggressive and super defiant when he hasn't napped and for the past couple of MONTHS we have been dealing the whiny TANTRUMS almost every night of refusal to sleep when he is in fact overtired. It's getting to the point where his bedtime is almost pushed back to 6:30, and I feel bad because I feel like that is so early? Idk.

People just keep saying "Hes growing out of his naps" but not giving any real helpful advice and I swear I'm about to lose it, my husband is more patient than I because he is not the parent staying at home, but even then he is almost at the end of his rope.

When he would typically take his nap between 1pm to 3pm, the rest of the day was pleasant. He slept best with his weighted blanket, but now that doesn't seem to be helping him anymore.

This is so maddening and frustrating.

This is mostly a vent, but advice/tips are welcome.

Thank you in advance.

edit: I'd like to clarify that we aren't taking his naps away, the issue is that he himself is skipping them when he still clearly needs them. Nonetheless, thank you all for the wonderful advice and taking the time to comment, it is greatly appreciated. As of today we tried the quiet activities during downtime, and so far that has worked. We will keep experimenting with all mentioned ideas, heavier blanket, more activity in the morning/daytime, try to squeeze in more outside time, more relaxing atmosphere, soft pajamas, lots of tickles and laughs, etc etc.

Take care everybody. 💜

Hello, I'm stressing. I just wanted to let this out. Basically I (female adult) have a little brother (toddler male) who's is autistic. Today we (my mother and me) put his glasses on and put him on the school bus that arrives at the house send him off to school.

Aaannnddd he arrived without them like always. We assume he has them in his case like always since he takes them off every time at school. but they won't. Or anywhere in his backpack. We texted his teacher, she had a sub today who said he didn't have them on when he arrived at school so he left them on the bus.

We call transportation. Transportation asked us his name so they can have the driver and bus helper check the bus. Put us on hold then tell us no they didn't find the glasses. Great. It's stressful, nothing we could do about it. I just wanted to rant. I don't know if I can rant here. If not I'm sorry!

Side note! Love the kid, typing this out help and now I'm laughing a little to how this boy manged to take his glasses off without anyone noticing. Again sorry if I can't rant here.

I'm from the UK. The school my daughter (5) is going to is usually really supportive. We don't have a formal diagnosis yet, the paediatricians won't see her until she's been seen by Speech and language therapy, but their wait time is over a year. The school have had her on a reduced timetable since December, I pick her up 20 minutes after lunch as she finds lunch time too overstimulating with too many children around and there are currently no extra hands to watch/support her. I then drop her back off at school 40 minutes after lunch, and then pick her up 30 minutes after that which would end her school day. From what I have been told today, they are taking one teacher out of the class to keep my daughter away from the others to do whatever it is they deem fit from when I bring her back after lunch, until I pick her up again. It has been 14 weeks, since they introduced these measures. They are saying that she's very close to being excluded due to attacking students and teachers. We are waiting to be seen by our gp to have her referrered via right to choose. I love my daughter so much, but she is getting so hard to handle with her constant screaming. She screams about positive things and negative things. She refuses to listen to myself or her father. Just looking for some advice I am tearing my hair out,

I'm an autistic parent of an autistic child, and I'm struggling to communicate the seriousness of a situation to my child because I struggle with it myself.

My child is 8, and like many neurodivergent kids, they struggle with interactions with neurotypical kids, and get annoyed with their peers. It doesn't help that they're 2E, and school bores them. Other students, who are probably just engaging developmentally-appropriate behavior, "bother" or "annoy" my child.

The problem that I'm having is that my child has decided that it is appropriate to threaten other students with bodily harm so they stop "being annoying", and now that we don't allow that, they're looking up shocking videos on school computers to scare the other students into giving them space.

We have tried (repeatedly) to impress upon my child that the best course of action is to tell their teacher, especially because they can address the behavior of the other children if it's actually out of line, but the lesson isn't sticking (I think because my child is already dysregulated and isn't thinking rationally, but also because telling the teacher typically doesn't result in an immediate cessation of the behavior).

I want to support my child to make better choices, and I don't want to put the burden of managing this behavior on their teacher, but I'm struggling with how to address this at home. Punishing the behavior doesn't feel right because my child understands that the behavior is wrong because we are upset, but because the action is effective, trying to justify it in a way that their very logical mind will understand has been tough.

Anyone have any advice?

F (18) I have an older brother (30) who always had a dislike to me, since I was born. I was told by family members when I came out of the womb he kept asking when am I going back to the hospital or he would just stare at me the whole day in my crib. Later on I became older more talkative and he would tell my mother he didn’t like my voice and it bothered him. He would pinch my mom or even bite her, since I was 4 I was told I couldn’t speak around him.

Since I was a kid didn’t listen I would continue to speak and one time he slapped me across the face in front of my birthday party. Everyone was in shook they went towards me to check but all I can remember that day was the pain. Ever since that he would slap me, pinch me, or bite me if I ever was near him or spoke near him. I still love him and I will never stop loving him, but it makes feel sad that I can’t even hug him without him being aggressive.

It’s still going on today, but I try my best to keep distance. His doctors told my parents I just have to talk to him so he’ll get over it but I tried and it’s been almost 13 years. I just need some help or an explanation why this is happening thank you.