r/Autism_Parenting

Here to vent. 40 yo PROUD dad of two autistic boys ages 2 and 5. Out to dinner with my wife's aunts this past weekend. My oldest has little impulse control and is constantly grabbing things and people. He especially likes grabbing things off of people, such as jewelry and glasses.

The restaurant seated us adjacent to the hostess station. My son grabbed several items at the station, reaching over the glass divider, including a phone. I apologized, explaining that he is autistic. I have no shame or fear of sharing my sons' autism.

Shortly thereafter, he grabbed the waitress's hair while she was at the station. I apologized to her and told her he's autistic.

My wife's aunt, shortly before we left, suggested that I tell people my son is "spirited" instead of using *that word.* I guess it's the "A" word, a bad word?

Of course I bit my tongue. But what I wanted to say? Seriously - fuck you lady. Don't tell me what to do with my son, especially considering you do jack shit for this kid beyond inviting us out to eat a couple times per year. Don't police my speech, insinuating I'm an insensitive asshole for telling people that my son has autism.

I'm not one of these parents who is embarrassed to admit their child has a disability. Special needs families deserve to partake in social events like eating out, however we are obliged to control our kids. I'm on my kids like a fly on shit when we go out. But there are moments when they can do something inappropriate, and my first born is too old to explain bad behavior away as mere toddler/preschool behavior. I feel it necessary to apologize and explain why he did what he did - it was because he is autistic.

"Autism" is not a dirty word.

From time to time, I see posts where parents facing down a diagnosis wonder “are any of you happy??” This subreddit (appropriately) gives parents a place to vent about the many real and difficult aspects of autism, so I felt like should just chime in to say that I genuinely enjoy and really really like my presumably level two son. He’s legit funny and interesting and smart, and I routinely thank the Lord that I get to be his dad.

I love my kids. They are both autistic. I hate to say this but they have ruined my life. I wish they never existed. I dread thinking of what each day will bring. They are non verbal and struggle with any communication even using AAC. They do not eat any “normal food” refuse to take medication hidden or not -will physically make themselves vomit. not potty trained. No safety awareness, runners , elopers. No friends. Stuck at home. I am here with them daily and talk to them ask questions with silence as a response. Its Isolating. They go to full time school with some progress but they are school age and are mentally/socially like 2 year olds. We have no assistance from family, no respite , no normal friendships with people because no one else understands what we are going through but i keep talking and explaining. I spend each day wondering what will happen to them when we die. They wont be able to function on their own. They will end up in some group home, alone , clueless. Probably wont even realize we are gone. Yet That’s years away so why do i sit here and worry. My mind cant stop. I feel disgusted that i feel this way but i cant help it. My husband and i just co exist making the motions each day. We used to vacation, date, have fun. Thats gone. Family cant be bothered to offer help now while they are able. Its an annoyance to them. They would rather pretend their autistic grandchildren dont exist. When they do come to see them they ignore the issue attempt to do things that a normal child would do. Things become unsafe, meltdowns happen but thats our fault. Keep pretending we are okay. Other support groups react saying to get out of our comfort zone , dont keep their world small. Doctors recommend services , medication after voicing concerns/frustrations. How ? No supports, no safety , no services available. Just keep going every day pretending to be happy.

Signed ,

an exhausted parent

Sorry in advance for how long this is. My son is obviously neurodivergent and has stumped everyone and I’m just trying to get answers so I can help him because his school isn’t.

My son is 6 and in kindergarten. While he’s extremely smart and appears neurotypical to others, he has always had some delays/processing issues that have never fully been addressed. We went through Early Intervention when he was 2 and he did speech therapy but their evaluation showed no autism (although this was during covid and over Zoom, they never saw him). He said his first word at 8 months but from there on out, he would say one word, then regress and say nothing again. He struggled with eye contact, zoned out frequently, didn’t respond to his name, and was very much in his own little world. By his second birthday he still only had 1-2 words at a time (aside from letters). We decided to stop speech therapy for a few weeks, and during that time he woke up counting backwards from 20 and his language exploded. He was caught up to his peers by age 3 although he had a speech impediment. 

Right before he turned 4 we got him evaluated for OT and they found pretty significant adaptive skill delays as well as some interoception issues, for example he struggled to potty train because he couldn’t feel his bladder when he had to go. He actually held his bladder for up to 24 hours at a time to the point where he gave himself nerve damage. The only way he could pee was if he pushed his bladder up against the corner of the couch, it was so stressful. He didn’t use the toilet until after his 4th birthday and lots of OT. His OT did another full evaluation and again assured us he wasn’t autistic and didn’t meet criteria for anything. To this day, he still has to be reminded to use the bathroom because he just can’t feel it. He comes home looking 8 months pregnant because he will not pee at school and drinks like a fish. He chugs water all day long, I think it’s a sensory thing, but he also won’t ask to refill his water bottle once it’s gone so he goes half the day with no water at all because he chugs all 24 ounces in the morning. I’ve asked the teacher to remind him to go when everyone else does, and she just said “we have designated time for kids to go to the restroom if they need to”… I get that, but HE personally needs to be told to go.

He has always been a slow processor. When you ask him questions, there’s a very long pause. Sometimes he answers eventually, sometimes he doesn’t. It also takes him a while to adapt to new situations. He isn’t anxious or anything, he just needs a few minutes to process what is around him and during that time he just stands there and zones out - nothing you do or say gets through to him, he is truly in his own little world. He wanders off at parks and he’ll walk straight into traffic even if you scream his name over and over for him to stop. and even got lost on a field trip even though my mom went and only had him to watch. His preschool teachers called him The Absentminded Professor because in their words “he’d just be thinking about volcanoes on Venus and not looking where he’s going in line”, if that makes sense. Still to this day, any time I see him in line he’s always a good 5 feet behind the person in front of him and everyone is trying push him along.

He has extreme hyperfixations, starting at a very young age. At around 18 months he became obsessed with letters. He carried around a bag of them everywhere he went. He knew all letters, capital and lowercase, by age 2 and could put them in order. He memorized a bunch of sight words. He didn’t speak anything meaningful, he only said letters and sight words. He’s had quite a few obsessions over the years where he fully immerses himself in them and it is ALL he talks about, then something new will come along and he will obsess over that. Cars, logos, superheroes, Mario, Pokemon, etc. Everything he says or does is related to his obsession at the moment. The only one that ever stuck around was space - he knows more about the universe than most college students. 

I could go on and on in detail, but I’m just going to list out some other concerns I’ve brought up:
-No sense of danger
-Doesn’t respond to body language, social cues, tone in others
-Lined up toys obsessively until about age 4
-Barely slept as a baby, never showed sleepy cues, wanted to be awake and stimulated constantly
-Very strong sense of justice
-Strict rule follower and will have huge meltdowns if rules are changed (ex, board games)
-Still struggles to dress himself
-Struggles with impulse control, but isn’t hyperactive
-Interoception issues- struggles to know when he is hot, hungry, in pain, etc.
-Extremely sentimental and affectionate, needs constant reassurance and gets his feelings hurt very easily
-Very slow reaction times
-“Autism accent”, his speech is more like a little scientist than a 6 year old. He also over pronounces words (enunciates every consonant)
-Enjoys being around other kids but struggles to initiate conversations and make friends. He usually just follows other kids until they include him, and then he’ll just start spouting off facts about his current hyper fixation.
-Gets overstimulated easily and needs a lot of down time to recharge after going out anywhere.

The most confusing part? Apparently, he does none of this stuff at school. His teacher and principal act like I am a crazy helicopter parent any time I try to ask for any sort of accommodation (which isn’t that often, I gave up months ago). They have lost him 6 different times in the carpool line because it’s always chaotic and he says he can’t hear where they’re telling him to go. On more than one occasion they put a totally different kid in my car (he was still lost inside the building and they were running around screaming his name), and blew me off when I messaged the teacher about it. I tried to get an IEP, as just a few months beforehand we had a private speech and OT evaluations where they told me he was behind, but when it came time to the meeting they said he was perfectly fine and a “model student”, and I “shouldn’t be worrying about him”. 

I have talked to his pediatrician about all of this. She agrees he is neurodivergent in some way. She wanted him to get evaluated by a research hospital where they can take a multidisciplinary approach since we don’t know what it is. She didn’t want them to focus on JUST autism or just ADHD. I was on the wait list for a research hospital for months and they never called back. Eventually I took him to a private practice, where they gave a stack of paperwork to his teacher who just wrote he was “average” for everything, which skewed the results. The teacher is another story, his class is full of special needs kids and I truly believe she didn’t want another one on her hands so she didn’t answer truthfully. The psychologist told me that based on mine and my husband’s answers, he would have inattentive ADHD. But because he wasn’t distracted during her evaluation (where it was quiet and calm), and because the teacher said he was perfectly fine, she couldn’t diagnose it. She said he has a high IQ, and that sometimes smart kids learn to mask really well. She said she wasn’t comfortable giving no diagnosis as he was obviously neurodivergent in some way, so she just said he had “unspecified neurodevelopmental disorder” and to have him tested again when he has a new teacher. I went back to the pediatrician with this info and she was again adamant that we get in with a research hospital, but UNC never called us back and Duke won’t even put us on their wait list until we submit the paperwork from his teacher, and obviously that will be a waste of time and skew the results again. 

Sorry this was so long. I am just so frustrated and want what’s best for my kid. I don’t care WHAT he has- or doesn’t have. I just want to keep him safe, and I want the school to give basic accommodations such as reminding him to fill his water bottle (he’ll just go thirsty instead of asking), use the bathroom, and keeping an eye on him because he is known to wander. I'd like to be able to trust they'll keep an extra eye on him during a field trip, fire drill, or god forbid an emergency. They WILL NOT do a damn thing unless I have some sort of diagnosis from a specialist. I also want to know how his brain works so I can help him gain some independence and regulate his big emotions.

Has anyone else been in a similar situation? Did you ever end up getting a diagnosis of anything, or should I just give up at this point? Should I keep trying to get in with the research hospital that can look at the whole picture or should I try another private practice that only specializes in ADHD/autism? Am I going to still be dressing and bathing my kid and keeping him from walking into traffic when he's 30? Looking for some reassurance lol.

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Ar what age did your child move from echolalia to functional language, if that happened for you?

Hey all, I have been struggling a bit lately. We are in the phase of life where my son who is 17 will be 18 in September is coming up on his senior year. While he is high functioning to a degree, he does worry me for the future. I’m struggling bc he’s smart as a whip, he has a job, never been in trouble once. But… i feel horrible saying this my husband and I are exhausted.

My husband came into his life when he was 7 and has been through it all with us. His dad doesn’t offer much in the way of having him for his normal visitation, or really any help at all. He decided that he didn’t want to help with driving him to work when he had him so he just stopped the visits. Fine. So, we have my son pretty much all of the time. His dad decided he didn’t want to be financially obligated as well, which that’s another story. So as I said my husband has helped with the financial side over the years. There is no connection between the two. I mean, I barely have a connection with my son. He doesn’t like to be hugged or engage unless you make him.

If you read this far THANK YOU! I guess I just needed somewhere to unload this without judgement. Lately, you can definitely feel the tension from my husband with my son. Again, I know how I feel and I’m sure it’s very tough for him. I’m just sad, I have no clue where the next steps are. College, yes but he will be at home. He can’t drive, which again more stress on me. I’ve been trying to help him, but the reality is I really don’t see it being possible. Maybe in his 20’s? I’m not even sure where he could go for college. We aren’t in a big city that offers public transportation. We are about 30 minutes from the downtown area that houses a lot of colleges. I guess is there anyone out there in my shoes? Blended family, spouse mentally exhausted as am I. Feeling the strain on your marriage. What happened next? How did you cope? I know my husband regrets being involved with me, but never would say so. He’s basically said he’s just been telling himself that he’s made it this far. That hurts, but I get it.

I appreciate you reading and any thoughts💚

My son is going through puberty… HELP!! He is 13 mostly non verbal has developed this habit which is a mix of sensory input and sexual stimulation where he goes around and touches hands and that could be almost anyone. The touching of the hands gets him aroused. This has been going on for a few months.. now I saw him go on Amazon and looking at silicone adult size dolls… and he came to me and said girlfriend 😬 anybody else experience something similar with their teens?

Hi all! Just curious to know if anyone’s child was diagnosed with the same combo?! My daughter was diagnosed with GDD at 18 months old and has been in early intervention and then preschool. So her progress has been substantial! But we just found out at the end of February that she has moderate autism PLUS a severe development delay.

She’s still speaking in a lot of jargon but does have some functional language and can communicate with us. Her school absolutely loves her and gets all of her therapies (public school). But I’m just curious to know when the jargon will stop and we can start having conversations? Or like right now, she doesn’t seem to “get” that it’s Christmas or her birthday. To her it’s just another day if that makes sense.

Just looking to hear others experiences. Thank you!!

I just lost my shit on my daughter, 11 yo level 2/3.

She has meltdowns, but she definitely absolutely misbehaves too. She's been attacking her bus monitor for the past few months without a reason, and for the past two nights she absolutely pitches a tantrum when it's time for bed.

I do not want to be told she's "melting down", because that's not what's happening and I'm sick of being told that by people. It's misbehavior because she controls when she has these outbursts; and she does it to get what she wants. She does not have these same episodes with her dad, and she misbehaves at school in ways she doesn't at home. The school has contacted me, inquiring about certain behaviors she has around her teachers and aids that she does not do at the house. So I honestly tell them I can't help them correct her behavior since she doesn't do it at home and I don't know what they're referring to.

I'm at a loss and really don't know what to do. I really don't want to lose my shit on her, but I don't feel like I have any other option at this point because her behavior is not a result of her autism as much as it is deliberate.

He is middle eastern, old school and while he does believe in adhd and autism as he can see how it has affected his own life as well as mine, he still thinks children should be displicined old school and always show respect and listen to mom and dad. He views PDA parenting as a form of gentle parenting. I understand you can’t make anyone do anything but is there someone who could maybe help him understand. A behavioural therapist?

I think it will be very effective with my son as he is ‘high functioning’ (sorry hate that word) and masks a lot. I also know pda parenting won’t be very effective if two parents are both not on board.

This is the challenges of having children in a marriage I guess. Yeah you may agree on how you will raise them, screen time limits, what foods they eat, what time they go to bed etc etc. But having a neurodivergent child and learning as you go can definitely be challenging as times for both parties

How do you guys handle your sensitive headed kids? Our 3 year old loses his mind with water on his head, not so much the soap part. He bites us and scratches us if we try buzzing his hair, I can usually cut it fairly short to be more manageable over the course of two weeks with a few moments at a time lol. I’m just wondering if there’s any other options than this. Are any no rinse shampoos good or non greasy? I’m thinking of dry shampoos too for the in between days since we absolutely cannot manage to wash his hair daily. We do a lice prevention spray as well because preschool.

my 2yo has an eval next month and i’m nervous.

he is significantly delayed in his expressive (3rd percentile) and total language (2nd percentile), and delayed in his receptive language (10th percentile). he was diagnosed with developmental language disorder in february.

i see a lot of things that are characteristic of ASD, but also just normal toddler behavior. i.e. inconsistent eye contact/response to his name, regression in terms of knowing/making animal sounds but now just shaking his head or calling our dog by his name but now just calling him “dog”, he used to eat literally anything you put in front of him and now he’s very selective, he doesn’t share; everything is “mine”, prefers parallel play, toe walking, finger flicking, spinning or asking to be spun, rubs random things such as rocks and grass on his face, lines/stacks any and everything, hits himself in the head, it takes him no less than an hour every night to actually settle to go to sleep, if we’re trying to transition to a different activity there’s a 99% chance of a meltdown unless it’s something he wants to do, he has a very limited sense of danger, he plays with his poop if he’s left in his crib with a poopy diaper for more than 5 mins, he excessively throws every single thing that he picks up, he has an intense interest in chickens, ducks, dinosaurs and rhinos, only wants to watch 1-2 tv shows and will absolutely lose it if you change it. and these are just to name a few.

i just want to mentally prepare myself for the eval and what it entails, and what may be his diagnosis.

When my son got his diagnosis, we decided against a second kid. My husband was relieved (he is very likely on the spectrum, as is most of his family, so I don't think he enjoyed having an infant) but this was so hard for me. I've always wanted two kids and I wanted my son to have a person who was in his corner as they grew up together.

My son was born when I was 33: now I'm 40 and the pain of that "missing baby" has not abated. Sometimes I think about going solo and doing a last ditch IVF round but I know I won't. But I also can't picture living the rest of my life yearning for a child I never met and wondering about the sibling my son sometimes asks for. My parents are dead, I struggle to connect with my husband, and my family is so small now, so I feel very, very alone a lot of the time.

For all my worries and stress for him, my son feels like the only bright spot in my life and it naturally makes me wish I could have doubled that with a second kid. Nothing has really worked out the way I hoped - and in many cases, I've lived many of my greatest fears, including a life-shortening medical diagnosis - so I feel so ...sad about what isn't.

I know this isn't ASD parenting specific, but I think you folks probably understand the extra layer of difficulty that the diagnosis can lay on our lives, so I figured I'd ask here.

Was anyone in a similar situation and actually let go of this pain? Did the years passing make you realize you were fine with just having one? Did you go to therapy to get help with it?

There's a good chance I'm autistic (but I don't personally need an AAC device) but I still am curious because I heard one lady say the app she uses for her child was 300 bucks?!

what features are IN those things and what features do you wish they had? it sounded like it was oddly difficult to figure out from what she said to the point they're supposed to have someone teach you how to use it, and used a lot of power, so I was wondering just what the deal was with this. I had a loved one who passed who had ALS who also used a similar device to communicate with people and...I just kind of want to know is how it all works and all and if there's like , at least some open source alternatives out there for you guys or what specific features are worth that level of money. I mean it's probably a lot more complicated than I'm expecting but I am kind of thrown off by the entire concept of an app let alone one so important being...that expensive. and I just am hoping to understand better out of curiosity. I know it's probably partially because it's a medical app of some sort but is that really the only reason an app with basic speech synthesis and text to speech + some basic premade buttons and the ability to make your own buttons that expensive? Is there more to it than that?

(note: sorry if I come across as rude at all I don't think I am but I can't always tell, please read this assuming I only mean the best and fully sympathise with those who have to deal with this stuff and the only anger or frustration I feel is on behalf of those who can't afford a voice and I worry that might have come out in my tone, thank you for understanding!)

My son is 4 and a half and loves numbers so telling the time came easy to him. I was wondering if a wristwatch would be a good idea, he is a little obsessed with time at the moment so not sure if it would be a constant draw/distraction and a bad idea. Anybody got any advice or recommendations, preferably train theme.

My child out of nowhere has had issues with getting dropped off at school. The first time it happened I thought it was a one off situation. But today (the second day) it was like the first day except 10 times worse. He had to be carried to the drop off spot, would not walk from the car to the drop off himself, and immediately he turned around and began walking back to the parking lot.

When I tried to talk to him about what was going on he dropped his backpack and began to hit me. I felt terrible and I just froze in place. A teacher aide did come over and talk to him and he only left with her. He is never one to get physical at all so I was very surprised he got to this point.

Nothing is different at school or at home I asked to see if anything was going on and nothing was.

I am just defeated as school drop off has never been an issue and all of a sudden it is the main issue. I feel judged by other parents walking by that didn't know the situation but has this ever happened to anyone else where something is fine and suddenly it is not? What should I do?

For parents who rejected ABA or pulled their child out of ABA, what was your reason and how old was your child?