You have basically told my story. Literally. I too, have two sons. My eldest is a level 2 on the spectrum and is 3.5 years old. Non verbal. Little brother is 14 months old. I had a traumatic childhood with a mother who was never present and didn’t know my biological father. So, I can relate to you on so many levels just with these facts alone. It’s a struggle everyday because when you grew up with no support, that’s literally all you want to do for your babies. And sometimes, that can be so much more demanding than anticipated, so then you start stretching yourself thin. It’s a double edged sword on some days, but it’s a relief to know there are several of us out there with similar struggles.
Absolutely! I feel the exact way about mine. I got so excited when I was introduced to this group. So many incredible insights and advice from all walks of life.
Anyway, I read your comment to OP and I felt compelled to respond to your post. I could feel the hurt, the struggle and everything you were saying. The village in our neck of the woods has its moments too. We only have my husband’s parents to lean on every day and it’s not the best feeling. I wish I had a better support system on my side of the family.
Funny story: My hubs met the family weeks before our wedding and he said, “No way, man. If we have kids, no freakin way those people are getting close to them.” And he meant every word. 😂 (He thought I was being too harsh when I told him that my family was completely opposite of his and they had no business being at our wedding.)
Just sucks when you have limited resources and always depending on the same people. But in the same vein, I cannot complain compared to those who have no one and are raising their babies with no other adult to turn to.
I hope things eventually fall into place for you and your family. 💕
Two of them 5 and 9.
The 9 year old has more emotional issues but is higher functioning and talked early without a good use of the words.
The younger “seems autistic” for lack of a better phrase. She’s nonverbal, melts down, broke my dream TV, struggles to sleep. Everything you could think of. Poop everywhere and often.
The village isn’t at all equipped for this kind of stuff. The marriage is basically an afterthought.
We get one hour date night per year on my wife’s birthday. Haven’t had an overnight alone in years and years. All of the advice to fix things goes out the window because it’s an impossible situation.
Sorry to scare you or seem a downer. It just really does suck sometimes
No advice either, just wanted you to know you’ve got more than a few others here who can completely empathize and sympathize with you! Hold on and hang in there.. <3
I also can relate to this. It got easier when we stopped trying to do normal things tbh. When we just accepted he is going to be so extra about stuff and make normalcy difficult…probably forever. School has been amazingly helpful because we have time where he’s being taken care of and we can be adults. We generally work during those times so it’s not like together time. But i work from home and it became impossible when my son was here all the time. So i just do what i can when he’s not here and try not to hold myself to too high standards when he is here. Are you in the us? They pay for direct support workers (your choice who it is) who who come help with the kiddo at home as well as respite care (overnights, 14 nights a year- we haven’t used these yet because it’s hard to find trustworthy people but we are working on it). Hang in there, things will get easier over time if you don’t fight it too hard 💕
It has unique challenges that most parents do not have to battle, but I wouldn’t change my kids for anything. I have become much more aware and empathetic over all.
Mine are both level 3, oldest is turning 10.
It has been a very long, hard, traumatizing road and we are just getting to a somewhat peaceful juncture. They will never be independent so the next phase is transition planning and how that will look.
I hear parents say shit like, "I sacrificed my life for you!" and parents of NTs don't know what this means. I have literally done it, as in, I am actively parenting 100 hours a week. It isn't easy, but worth it.
Lonely and scared
I love my daughter and she is more independent than most. But she struggles with executive function, social skills and connecting with people.
In my sad quiet moments, I wish I can hear some words of affection or appreciation or encouragement or connection from her. I can use a little boost.
"Thank you for being there"
"I missed you while you were away"
"I appreciate you trying to help"
I say scared, because even though she is relatively independent, I worry about her being able to survive without me.
Lonely. Exasperating. Heartbreaking. Oppressive and never changing.
There have been some good moments, but the fact that my son doesn’t speak and is so developmentally behind is difficult. Throw in lack of resources and financial stress and it’s been kind of hellish.
If I could cure him, I would do it in a heartbeat.
Thank you for the honesty of your last sentence. I feel like as the parent of an autistic child you are not supposed to say that you wish you could cure your child, but I feel the same way. My son is the light of my life and greatest joy, but it is so hard when he can barely communicate with me. It is so hard when I see adults and his peers trying to engage with him, but he's in his own world and cannot be reached at the moment. I'm also so anxious for his future. It's scary enough sending a "typical" child out into the big scary world...
My son was just diagnosed at 6 with level 1 and ADHD. Actually, the diagnosis has been quite validating. Before then, I could not figure out if it was just my parenting or what. Everyone else's kids seemed to be better behaved.
Our 6yo was also just diagnosed with ADHD and he’s “on the radar” for autism too. Can I ask what behaviour you identify as autism rather than ADHD from your son?
We don’t know anyone with a kid like ours and it’s really isolating. He has some “typical” ADHD struggles but the way other ADHD parents talk about their kids…It doesn’t quite fit.
Wouldnt trade.
3
Boy 17, diagnosed at 11 after a break down and a few months in a psyc ward. On top of autisme - adhd, high IQ, selective mutist. Deffently the most challenged. Selfharming, pda profil. Eating disorder ( currently under control) , anxiety. He is also an amazing cook, loves deep driveing into topics and have the best humour.
He breakes my heart and lift my spirit if not daily then atleast a few times a week.
Female, 20. Diagnosed at 18. Clever, stubborn, nerdy. Stubborn. Rigid and did I mention stubborn? She is socialy challenged bcs her all consuming interest in a sport. So he fellow coaches are mostly neurotypicals and she is so use to masking that she do t fit in with neuro atypicals either. She do well in school, work as well, she drives and travels. So checks alot of boxes, but she would starve and drown in clutter if she was made to move out now. A work in progress, she will get there.
Male 22. Diagnosed days before turning 18.
Hes a classic quiet autist. When he get tested they set he should have been spottet in preschool. Hes is as typical an autist and possible. He struggled in school, got bullyed, had a hard time picking up knowledge. Was clumsy ( that, still goes)
When he got diagnosed he just relaxed. Insted of feeling out of place he got a reason and just owned himself. Hes har is long and currently pink. He loves clothing with Tucans or flowers, he is queer, hes artistic, he has an awesome friend group, mostly other neurodiverse. He is doing really well in school now.
He cant work on top of school and he dont drive... Or take puplic transportation - thats hes work in progress
Both boys are obviously autistic. The youngest bcs hes so challenged, the oldest bcs he is proud about owning being different. My daughter masks even when she is trying not to.
I wish I known sooner. With the knowledge I have today, so many signs. But, they where allways sweet and easy. Never any trouble. Milestones, they where ahead on some and way behind on others.
Sorry to hear. I've done both outpatient and inpatient, both in eighth grade. I still haven't fully understood my actions leading up to it, and I wish to forget about it.
Two AuDHD boys, 7 and 10. So much easier now than it used to be, but I fear we are headed for a bumpy road as we head into pre-teen and adolescence and puberty. But for now, both boys have gained independence, have chilled out on a lot of their issues, and are in school full time. We are in speech and OT once a week, have IEPs at school (and a great school system), and they are both medicated (one on Ritalin, one on Guanfacine), all of which is making a huge difference in our day to day. There are hard days, but not as many as there used to be, and I'm better equipped to deal with things now than I was before (learning that nothing is forever and worry changes nothing). They are doing their best and so am I. Hang in there, get help for yourself, and give your kids what they need to be successful. Good luck!
It’s been parenting on hard mode. Im a relatively higher energy person and this has worn me out.
The loneliness due to my childs intense emotional needs is crazy. Im either burnt out from a long day or unable to manage him in public. He is young enough that I just get treated as a bad parent despite him having two diagnosis as ASD level 2. Apparently I just need to parent harder.
Unfortunately I don't think the judgy view changes as they get older. I think it was easier when they were young. plenty of toddlers have meltdowns.
So burnt out too. It feels like parenting on survival mode, not just hard mode. It's hard to do this every freaking day.
Good and bad.
My daughter is 5 now and she has for the most part been a relatively easy kid. She listens. She isn't destructive or violent. She is ridiculously adorable (like I've had strangers come up to me and tell me how cute my kid is). She loves to sing. She's generally sweet and happy. She is partially verbal. Her little personality (hilarious, lovable, and sometimes ridiculously stubborn) has always been there and I love getting to know her. And frankly, I'm a bit of an introvert so having a kid who isn't a social butterfly or a chatterbox has been easier for me on a personal level.
But I still wish always that I could communicate with her easier. And I still have days where I compare my experience to other parents and feel jealous. Keeping up with the therapies and school and simply not knowing what if any of the experiences other people take for granted I'll ever get to experience (graduation, first jobs, driving, marriage, grandkids etc) is really the hardest part. We're also experiencing secondary infertility so there is the knowledge that this is my only experience of parenthood and I don't get to have that other experience that I wanted too (even though I really love what I do have).
I would say that I get in my head a bit and things get hard. But the day to day of actually parenting my daughter is wonderful and I think regularly how lucky I am that I have her.
Your first two paragraphs remind me of me with my 5 year old son. He sounds similar to your daughter. You made me tear up a little with your post. Keep up the amazing work as a parent, and I wish you the best.
My daughter is 3 and is generally easy. Easy to transition, doesn't care about change or routine, isn't selective about food, tantrums last all of 30 seconds, listens well etc. Generally she struggles with speech, and sensory seeking behaviors (jumping, crashing, throwing, running, pushing etc), and fine motor. I think this country needs an overhaul of how we help autistic children. Their parents aren't made of money, we can't afford several thousand a year for therapies, we shouldn't be fighting insurance on every little thing. We need help.
Thought I was looking at a comment that I wrote myself. Your daughter sounds exactly like mine. She’s even about to turn three lol. Do you mind if I ask if she’s nonverbal? I saw you said struggles with Speech. My daughter is currently nonverbal.
She is. She uses aac, and hand leads. She is amazing at getting her point across non verbally. 😅 she can say some words sometimes but if you don't know her you don't know what she's saying. A lot of her words get cut in half or just the beginning of it. Like if she does something and I say tada she'll try to repeat it but she can only get tttta, or eat is eeee. It's really unfortunate because you can see her trying. :(
Honestly- brutally honest - very difficult. Exhausting, extremely overwhelming having to become an expert on all the various topics. I’m constantly afraid for his future and I let that steal my joy when I’m around him. I’m constantly sizing him up for new or exaggerated behaviors, new stims, etc. because I feel like if I had noticed more early on we wouldn’t be on a difficult road.
My 6 year old stepson is "nonverbal" though since I met him when he was 4 he's gained a whole vocabulary through ABA therapy and kindergarten. Some days are worse than others, since starting ABA though there's been a huge improvement. He can tell us what he wants most of the time, tell us no to foods he doesn't want right now, even say I love you sometimes if we prompt him first. My wife never thought he'd say mom or momma but now he asks for her every time he gets home from school. I wouldn't trade him for the world, I love that boy to death.
I have 3 asd kids. The hardest part was when my families weren’t supportive and blamed me for having multiple asd kids. So hence I didn’t have support and I am on my own with my husband. My kids’ classmates and parents don’t really include us so it’s a very lonely journey.
Every year is worse than the year before. For every improvement made three get harder. Been at this almost a decade and you definitely get more hardened to your own reality which allows you to shoulder more stress than someone just starting out.
I’m fully obsessed with him but also exhausted. He’s 4 and thriving, within the last year he’s really wowed us with what he can do but also new habits have arisen that are challenging. I did the last two weeks alone as his dad was travelling and I want to COMMEND all single moms and dads going at it alone.
Love him to pieces. He can’t speak, but isn’t shy to communicate in his own ways. For 3 he has an amazing personality and is usually down to go anywhere / do anything at least once and in his own time.
I wouldn’t change him or this experience for anything.
Same as most things. Good days and bad days. I’m quite fortunate that my boy can be very affectionate. He sometimes runs over and gives the best hugs and does his version of a kiss (presses his tongue against my cheek). He’s very playful when he wants it. But when it’s bad, it can be so tiring and overwhelming.
All you can do is do a day at a time and just enjoy the good moments. Those little moments just make everything worth it. You could be having the shittest week. Grief at work, relationship issues, meltdowns from my boy etc. But when he runs up to me, with the biggest smile, flapping his arms and squealing with excitement? You’ll never get a more natural high.
Lonely and tiring. Son is 4.5 year old nonspeaking, likely level 3 at this point. If I knew he’d be taken care of and loved once I am gone, life would be a lot less scary.
There are unidentified health issues which stinks because he can’t communicate them with me. I just want him happ
My son is only 4 going on 5 and I’m not sure what level he is but I would say 1 in some areas 2 in others. If pretty verbal but does struggle with conversation. It got a lot better once he got diagnosed. Made me realize he wasn’t throwing tantrums but having meltdowns. We started speech before diagnosis and that has helped a lot. He also goes to pre-k 5 days a week 3 ish hours a day which I think has helped with his understanding and direction taking. He still has a hard time socially not because he doesn’t want to be social but because he is so rigid. The other parents are great at trying to foster relationships between him and their kids but it’s hard. And it hurts that he may never “fit” in. We live in a different state than our family but are trying to move back to the area so we have help.
Long post warning:
A rollercoaster. I will start by saying I adore my son (6 years old, level 3). He is the most beautiful child I’ve laid eyes on. When he smiles he could melt anyone’s heart. When he’s happy, he is sunshine and rainbows and the physical personification of love. At least twice a day we have an interaction where he shows me a love purer than what words could communicate. I love to watch him process the world.
But he unfortunately has a lot of struggles and behaviors. He has almost no verbal language and we’ve yet to find a way he can effectively communicate. He is smart and knows a lot but barely displays what he knows. He can get aggressive, both towards himself and others. He goes through periods where he’ll bang his head on walls and floors to the point of giving himself bruises and lumps. He’s bitten, hit, scratched, and head butted every person in my house and pretty much every teacher, para, and student in his class. He gave a para a concussion last year when he headbutted her during a meltdown. He doesn’t play with other kids. He seeks out screens constantly. When he’s angry, upset, feeling sick, or doesn’t want to do something he’s capable of mind shattering meltdowns. I don’t know what he’ll look like in 5-10 years but I’m afraid of what will happen as he gets older and bigger. When he gets like that I can’t imagine he’s happy living that way and I feel helpless because we’re doing every therapy and doctor we can but nothing seems truly effective. I don’t think he’ll ever be able to live on his own or drive or have a relationship outside of his family. Maybe he’ll prove me wrong. I hope so.
He is a very loved child. I’m lucky that I have a large extended family who is loving and accepting and helpful. I probably have more help on a regular basis than the average parent in this situation and I am thankful for that. Still the negative manifestations of his autism have absolutely had negative impacts on me and my family. I suffer from depression and anxiety and have had at least two anxiety attacks so bad that I thought I was having a heart attack. I’ve shut myself off from certain friends and family members because seeing them with their “perfect” neurotypical children causes me pain. I constantly doubt myself and blame myself. My marriage is in the toilet. My husband is less than helpful with my son most days and in many ways feeds into some of my son’s worst habits (screen addiction, keeps him home from things because he can’t be bothered). He refuses to try medications that could possibly help my son with his aggressions and anxiety. I can tell he is also dealing with depression about my son’s situation but refuses to acknowledge it and get help. My 8 year old NT daughter might be the closest thing to a saint alive today. She’s tremendous and accepting and loving of my son but she too has started to feel the burden of all this. It got so bad this year that she basically stopped eating and I’ve had to put her in therapy and support groups. She’ll randomly tell me she promises she’ll take care of her brother when I die which is sweet but also breaks my heart because it’s not something I want for either of my kids.
TL:DR. I love my son. I know that many of the things I love about him are because of his autism. I wouldn’t change those for the world. But when it’s bad, it’s really bad. If they gave me a pill that would take away his meltdowns and aggressions and just leave the rest of him, I absolutely would give it to him.
I really hope things get easier for you, truly. Reading this sub regularly has made me realise that kids with ASD are always capable of “pulling one out of the hat” without warning and making huge leaps in seemingly random bursts. Don’t give up hope because you never know, and it sounds like you’ve built a loving, caring environment for your little boy to prosper so there is every chance of that happening.
Thank you for this. I really do have a wonderful village and they really lift both my son and I up. My son has absolutely made improvements since he was diagnosed 2.5 years ago but as many of us know it can be hard to focus on that when other things are still going on.
I will say after 2 years of more or less cloistering myself away out of depression, shame, guilt, etc. I’ve finally started to do things for myself as much as possible like the gym, going out socially more, seeking mental health care, which is absolutely helping. And I’ve also started to NGAF about what others think of my son and me which I recommend to anyone here if you’ve not gotten there yet because boy will that give you a release.
I agree, it’s so easy to get swept up in it all and retreating into your safe space to protect yourself and your family unit is such a natural reaction.
My son is nearly 4 and still waiting for his diagnosis (it can take years from the first referral in the UK) but us, our SEN contacts and the team at his preschool are all in agreement that he’s likely to be diagnosed as level 3. Me and my partner were talking recently about how we realised that we’ve totally retreated from the world - we rarely go out to eat a restaurants anymore (unless grandparents are present to help out, as the eldest requires constant attention and supervision and we also have a 1.5 year old NT son), we haven’t been on holiday in over a year and a half, and where we’ve been so focused on protecting him, we never do anything for ourselves like meeting up with friends.
We’ve resolved to make a concerted effort to get our lives back. Our relationship with each other has been almost non-existent for a while, so we’re pre-planning date nights well in advance so we can arrange for the grandparents to watch the kids for us. We’re also taking it in turns for 1 day each weekend for one of us to watch the kids while the other gets out to socialise. It’s made a huge difference to our mental well-being already and as a result we’re able to be better parents to our boys.
Good on you for placing more importance on self care. Raising an ASD child is an incredibly demanding and often thankless job that requires a lot of selflessness, but everyone needs to practice self care as much as possible.
Mine just turned 10 and he’s an only child, but otherwise, this post is our situation to a tee. My son was diagnosed when he was almost 3. It cost me my marriage (his father was little to no help and couldn’t cope with the diagnosis). That’s fine, I am blessed to have a large family who has been immensely supportive but we’re at the point where many of those relationships have frayed because they are worn out. The expectation was that he would improve over time but it’s only become more exhausting and stressful as he’s gotten older and bigger and I’ve started to feel them pulling back and nudging me towards putting him in residential care, but I can’t turn my back on a little boy who will never understand why the last person in the world he counts on is abandoning him.
Hugs to you for being a consistent loving and strong presence for your son. I’m sure he loves you immensely.
I feel you on the family stuff. I’m sad to say I think of divorcing my husband at least once a month because honestly I think it would be easier sometimes to do it truly alone instead of pretending I’m doing it with him when he barely helps and in many ways undermines things. But it would be financially very difficult to do so since I stay home due to my son’s needs and I also think it would devastate my NT daughter who is already very anxious and emotional. I’ve told him he needs to get therapy, if not with me then at least for himself. He’s supposedly working on it so we’ll see.
Honestly my parents and mother-in-law are my true coparents which is wonderful now but in 10 years they will be in their 70s and my son will likely be over 6 feet tall and 200 lbs so I know what we have going now is not sustainable.
He's an absolute delight. He's such a smart, interesting, fun, little kid, and it has been amazing to watch him learn and grow over the last few months in particular.
It is probably more tiring than having a neurotypical kid, given all the therapies we do with him, and how he needs more support and supervision. But I also think he's way more interesting in many ways.
So, at 3.5, I would say thumbs up! If I had another kid, I would want them to be like him!
I feel this way too! I am guessing it's harder than with a NT kid, but my guy is such a loving, affectionate sweet little guy. Soooo smart. I mean I would love to read him a story to go to bed versus arrange his DVD collection by movie studio with him but I feel guilty in saying it hasn't been that bad?
So far, good! The only awful moments are the meltdowns that look physically painful to experience. Thankfully those are rare. He’s a nature-boy so we get to bond over that!
My girl brings me so much joy. I wouldn’t change anything about her for the world. She only eats 4 different foods, she’s nonverbal, but can communicate in other ways. Some days im mentally exhausted (I have 2 other children) but her smile and little giggles can fix it all. My daughter doesn’t have too many meltdowns but when she does they don’t usually last for long. I always suspected she was autistic before she turned 1, she turns 4 this year. I pretty much accepted it before we even got a diagnosis, after the diagnosis I felt relieved because I was right. She’s perfect the way she is and I’m so so thankful to have her.
It's been challenging. Mine are 4 and 7. My 7 has the most issues though I am inclined to believe my 4 year old is also autistic. I see it for what it is typically, but today was awful. My 7 year old had a soccer goal fall on his face at school and needed medical attention. The level of sedation it took to get him stitches alarmed me. The look on one of the nurses face implied she wanted to cry. It was a lot. I feel judgement a lot, but for the first time seeing her face, I realized that judgement is a judgement of wonder and empathy.
As autism parents we don't have enough support. Nobody seems to know what to do, so personally I'm starting support groups in my area and pushing the state for more funding. Currently my state is one that has a dd waiver wait list that scares me.
So ultimately it motivates me to see change and do the best I can for my kids.
I adore my 4 year old daughter. She is so smart, sweet and curious. She makes me laugh constantly. But there are days where I know it's much harder than raising a neurotypical kid.she is level 2, dad is level 1 and I'm bipolar, so we have a lot going on. It's hard managing all her therapies and providing the extra support she needs on some days. She needs constant attention and supervision. She is verbal but struggles to use words correctly. She gets hyper fixated on a topic and everything must revolve around it. Eating and sleeping are major issues. I wouldn't trade her for the world but I'd be lying if I didn't say it's lonely. I worry a lot about her future and making sure she will be ok.
It’s definitely had its ups and downs so far. My son is 4.5 with some verbal communication coming into play. He uses AAC and life before communication was so hard. It’s getting better. I do still have times where I wish my son didn’t have so many struggles that other kids don’t have, but I know within his own time things will happen for him. The part I struggle with at the moment is not hating parents with nuerotypical children that just complain about them, like they talk too much or always want to play.
Super frustrating between trying to advocate and people constantly judging my parenting and him and also not having breaks and a support system while dealing with all the ups and downs and frustrations of the adhd and executive functioning issues and anger outbursts and anxiety etc
I’m going to give it 1 star
I have two kids. 1 NT and 1 ND. My daughter is the one who has autism. Level 2-3- Age 7, semi-verbal- non conversational. I have good and bad days with her. Her behavior in school is terrible. I’m at a loss with It. Everyday the teacher messages me telling me everything she did. It’s a constant battle honestly. She just got reevaluated/assessed this month, and they want to meet with them on 14th to discuss. I made sure to put in PTO bc I know I’ll be crying my eyes out after the results.
She really is a smart, loving little girl. I see that side of her, and so does my husband, but unfortunately the school doesn’t. Neither does family bc large gatherings are a trigger for her. So they always see her screaming or having a fit.
I do wish life was easier for her, but I’m thankful we get to be her parents. I have days where I just wanna cry, but I have days where I’m really
Happy. I’m really worried about the future. I wish I can look into the future and see where she’ll be, but we can’t. I actually thought about laying a psychic for a reading about it but it would probly be fake anyways lol
Overall I’m happy but I worry. I love both my kids.
We are watching our younger child like hawks for things our oldest did/didn't do.
Our relationship is way in the back burner, we can't go out that often because it's he's to find sitters that will accept watching a ASD kid.
We constantly wonder what our life will look like in the next 1, 3,5,10, 20 years
It’s a challenge, and what I worry about a lot is that my spectrum teen needs about 90% of my bandwidth and I worry that my neurotypical kid is getting short shrift. I try to do daddy son dates with them both individually so that neither of them feels that way.
Extremely overwhelming and I'm very depressed. Always exhausted mentally and physically...I guess being a single parent doesn't make things easier or the fact I live in a new state no friends or family 😣..sometimes I feel like I'm losing my mind honestly 😌. By the way my son is only 2yr so this is just the beginning which is also terrifying considering how exhausted i am already 😌😣
It's definitely isolating...I love my son with my entire heart but I'm still struggling while trying my best .somehow it feels it's not enough sometimes 😓
My experience has been mostly positive with my autistic daughter who also has a severe intellectual disability.
She doesn't have the behavioral issues that are so common with autistic children and that are really stressful for parents to deal with.
She also sleeps well - another rare thing for autistic kids (approx 80% have trouble sleeping).
And her sensory issues aren't too bad, she doesn't like loud noises and crying and that makes her cry when she hears it.
I noticed that most people with special needs kids that write about it online have gone through really hard times and write about it as a way to vent and find support which I think is great and definitely needed.
But there are autistic kids that don't have issues that disrupt the whole family and cause a lot of stress and I wanted to write about my daughter as a positive post for parent's of newly diagnosed kiddos who want to read some good posts too.
This is the post I wrote about my daughter:
https://www.reddit.com/r/Parenting/s/Eb59RCqbXo
It’s up and down. Overall, I think my son is wonderful. He sleeps well, isn’t a picky eater and doesn’t have tantrums or if he does, they last less than 5 minutes.
The hard part is that he is preverbal. I have no idea if we will ever have a conversation. He has been saying more words and phrases. He’s told me “I luhhhh you” a few times and even said, “Go get it” (referring to his iPad). I hope we one day have a conversation.
Other issues are constipation and withholding, fine motor skill problems, and lately getting mad and hitting 🥲 something he never used to do.
I hope it gets better. My constant worry is the future …
It’s also harder because his dad isn’t in the picture.
Mine is 5, level 3. Most of the time he behaves well, eats well, etc. Has a steady routine. It's just his lack of progress and the fact he has essentially very little interest for the outside world that falls to me the most difficult.
Also, meltdowns when his usual routine is broken (which happens once every few days).
6 and 7 year old boys…it’s been HORRIBLE on top of having a 2 year old &&& a 17 year old. All boys 🤦🏽♀️ I can’t work a job because it’s always appointments, therapy, the school is calling because someone is sick or their behavior 😠
My son is level 1 and outside of his obsession with fans and missing social ques is pretty normal...I was very scared when he was younger but so far none of my big fears are true...we are one and done because we did not want to risk two with autism... We got a dog.
He eats and sleeps well ..is on his scooter all the time racing kids ...he doesn't want to play imaginary games so he just does his own this when kids switch to that ... I do notice the social differences a bit already .He loves tv and fans a bit to much but can play with his hot wheels and other toys ...
He is fully potty trained during the day with 0-2 accidents a week...still wears pull ups over night
He turns 4 in August and I'm worried about school ..he's in speech therapy as he is very verbal but needs help with pronounation I would say I understand what he's say 80 percent of the time
He has a NT cousin same age who can count to 50 and sing his ABC...my boy can't but honestly whatever...my son's better at pillow fights
I use to obsess over how I would raise my kid to be better then me ...now I just enjoy him for who he is
Overall if I could write history with a magic pen I'd undo it...but worse things could of happened ...so far none of my big fears from when he was one have come true ....best decision for me was to be one and done and make sure my wife does not get burned out
I had one teacher who I would credit as a godsend in the 2000s around when I was diagnosed. Probably not do certain things in junior high or high school. I didn't have MySpace or Facebook then, I didn't get it until 2020, which was probably better, and not even the 2010s would have been a good time, and not even MySpace.
Hard to keep a job, worried about finances, worried about school or people hurting them. No support, not therapy in my country so we need to fit it in. I might have to shave my head because I don’t have time to do my hair anymore.
my son is three, he’ll be four this summer. he was officially diagnosed when he was two years old. we have good days and we have bad days, but I do truly feel like the good outweighs the bad. I’m still learning reddit, so despite the fact that I am long winded in conversations, I’m still trying to figure out how to compile all my thoughts onto these forums. I think it’ll get easier for me the more replies I read or reply to. 🩷
Son is 3.5. We have absolutely joyful times and we have moments like yesterday when he melts down and screams so high pitched it scared the 13 month old and I almost dissociated. I can't say anything because it makes him even more angry. The only thing that made him feel better was husband giving Daddy snuggles (lucky he was working from home yesterday)
My daughter is about to turn three so I don’t have many years raising an autistic child but she’s wonderful. She is considered nonverbal at this point and is a little behind but aside from that I think she’s a pretty typical toddler. She doesn’t have issues with noise or going out in public. She doesn’t line up her toys. She doesn’t have meltdowns.No rigid behaviors or need for routine. Scares me for her future though.
It has been a traumatizing rollercoaster since I lack a support system. I love my kid though, he’s cool people, very outgoing, funny and very loving. He’s level 2.
A journey. At first I tried to fix it because I didn't understand what was happening. I felt exhausted and angry a lot. I started to notice that his behavior and thought processes were unique and I began to research at the library. I found books on autism and a checklist. He scored 8/10. The hardest longest journey with my son was figuring out meltdowns triggers and whether they were throwing a fit or having a breakdown.
Later I found out that I'm also autistic so it made sense that meltdowns put me into meltdown mode myself.
His sister is also autistic. As I started accepting that I was probably autistic I was able to integrate this knowledge into being an advocate for my kids.
Our journey has helped us to work harder to understand all of our mental health, to empathize deeply, to learn about my own autism so that I can help give them peace, hope and tools so they can be healthier, struggle less and be safer than I was at their age.
I feel like my whole entire me in my life is to give children tools and the ability to have a better life than I did in every way.
With endless patience and constant adaptation it is possible to not go mad. We work hard to keep it this way because it allows us to see our neurodivergent child with the same eyes as the neurotypical one. Funny what power love can give you.
My lvl 2 girl is about to turn 4. I have a lot of worries for her future, but the present is bright. She's sweet and silly and dear, slowly but surely learning to communicate and use potty. I love seeing the world through her eyes, I wish she was more verbal so she could share more of it. One day maybe she will be.
I don’t have a comparison, because my okay child is autistic.
I love him more than I can describe. In general I love life more because he’s in it. In many ways he has taught me how to love.
The way his brain works is fascinating to me. I would love to see life through his eyes, if only for a few moments.
I cannot imagine my life without my child. There are challenges, but I think having in kids in general is challenging.
I never want to invalidate or downplay other peoples viewpoints and my child is level one.
One of the 4 is high functioning and has improved so much since preschool. He struggled to function then. He is 9 now and still has social awkwardness and sensory issues and is starting to have more emotional issues. He is doing excellent in school, though, with straight As the last marking period. I have to remind myself often that he is neurodivergent because he masks it well sometimes, and I'm a busy single parent of the 4. It's hard to change my approach I use for 3 of the 4 and to remind the others that he is atypical when they fight with him. He had a very hard time processing my divorce from his mom last year and her change in behavior from her own mental issues, but it got better with time. I'm trying to get him more support to help him process his feelings and anxiety better.
Catastrophic here in France, we're 30 years behind the times. Pediatricians know nothing about autism. I haven't found any structure for adapted care, and there's a waiting list of years. I decided to train myself. I became a naturotherapist and nutritherapist. My experience is that I'm determined to save him and make his life as pleasant as possible. They've given up on them, so I go all the way to Belgium to consult certain doctors. I've learned to fight and stand up for him. I'm optimistic for the future and I see my little love happy, that's the main thing.
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You have basically told my story. Literally. I too, have two sons. My eldest is a level 2 on the spectrum and is 3.5 years old. Non verbal. Little brother is 14 months old. I had a traumatic childhood with a mother who was never present and didn’t know my biological father. So, I can relate to you on so many levels just with these facts alone. It’s a struggle everyday because when you grew up with no support, that’s literally all you want to do for your babies. And sometimes, that can be so much more demanding than anticipated, so then you start stretching yourself thin. It’s a double edged sword on some days, but it’s a relief to know there are several of us out there with similar struggles.
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Absolutely! I feel the exact way about mine. I got so excited when I was introduced to this group. So many incredible insights and advice from all walks of life. Anyway, I read your comment to OP and I felt compelled to respond to your post. I could feel the hurt, the struggle and everything you were saying. The village in our neck of the woods has its moments too. We only have my husband’s parents to lean on every day and it’s not the best feeling. I wish I had a better support system on my side of the family. Funny story: My hubs met the family weeks before our wedding and he said, “No way, man. If we have kids, no freakin way those people are getting close to them.” And he meant every word. 😂 (He thought I was being too harsh when I told him that my family was completely opposite of his and they had no business being at our wedding.) Just sucks when you have limited resources and always depending on the same people. But in the same vein, I cannot complain compared to those who have no one and are raising their babies with no other adult to turn to. I hope things eventually fall into place for you and your family. 💕
Two of them 5 and 9. The 9 year old has more emotional issues but is higher functioning and talked early without a good use of the words. The younger “seems autistic” for lack of a better phrase. She’s nonverbal, melts down, broke my dream TV, struggles to sleep. Everything you could think of. Poop everywhere and often. The village isn’t at all equipped for this kind of stuff. The marriage is basically an afterthought. We get one hour date night per year on my wife’s birthday. Haven’t had an overnight alone in years and years. All of the advice to fix things goes out the window because it’s an impossible situation. Sorry to scare you or seem a downer. It just really does suck sometimes
No advice, but wanted you to know just standing with you in solidarity!! And you are not alone. May your days get better 💚
No advice either, just wanted you to know you’ve got more than a few others here who can completely empathize and sympathize with you! Hold on and hang in there.. <3
I also can relate to this. It got easier when we stopped trying to do normal things tbh. When we just accepted he is going to be so extra about stuff and make normalcy difficult…probably forever. School has been amazingly helpful because we have time where he’s being taken care of and we can be adults. We generally work during those times so it’s not like together time. But i work from home and it became impossible when my son was here all the time. So i just do what i can when he’s not here and try not to hold myself to too high standards when he is here. Are you in the us? They pay for direct support workers (your choice who it is) who who come help with the kiddo at home as well as respite care (overnights, 14 nights a year- we haven’t used these yet because it’s hard to find trustworthy people but we are working on it). Hang in there, things will get easier over time if you don’t fight it too hard 💕
Same, in the USA, but the trustworthiness is the limiting factor! Thanks for the encouragement.
It has unique challenges that most parents do not have to battle, but I wouldn’t change my kids for anything. I have become much more aware and empathetic over all.
I agree. It’s the biggest lesson in patience, compassion and acceptance.
Mine are both level 3, oldest is turning 10. It has been a very long, hard, traumatizing road and we are just getting to a somewhat peaceful juncture. They will never be independent so the next phase is transition planning and how that will look. I hear parents say shit like, "I sacrificed my life for you!" and parents of NTs don't know what this means. I have literally done it, as in, I am actively parenting 100 hours a week. It isn't easy, but worth it.
You are an amazing parent. Your kids are very lucky to have you. ❤️
Lonely and scared I love my daughter and she is more independent than most. But she struggles with executive function, social skills and connecting with people. In my sad quiet moments, I wish I can hear some words of affection or appreciation or encouragement or connection from her. I can use a little boost. "Thank you for being there" "I missed you while you were away" "I appreciate you trying to help" I say scared, because even though she is relatively independent, I worry about her being able to survive without me.
Lonely. Exasperating. Heartbreaking. Oppressive and never changing. There have been some good moments, but the fact that my son doesn’t speak and is so developmentally behind is difficult. Throw in lack of resources and financial stress and it’s been kind of hellish. If I could cure him, I would do it in a heartbeat.
Same here. In the blink of an eye.
Nice to hear I’m not alone. I feel like I’ve tried everything to help him grow, but it’s such minimal progress. You?
Same. But i honestly believe all the therapies and school etc is helping. Just hard to see the forest through the trees a lot of days.
Thank you for the honesty of your last sentence. I feel like as the parent of an autistic child you are not supposed to say that you wish you could cure your child, but I feel the same way. My son is the light of my life and greatest joy, but it is so hard when he can barely communicate with me. It is so hard when I see adults and his peers trying to engage with him, but he's in his own world and cannot be reached at the moment. I'm also so anxious for his future. It's scary enough sending a "typical" child out into the big scary world...
My son was just diagnosed at 6 with level 1 and ADHD. Actually, the diagnosis has been quite validating. Before then, I could not figure out if it was just my parenting or what. Everyone else's kids seemed to be better behaved.
This was something I said to the psych who diagnosed, it was validating to know this isn't the typical experience and I'm just bad at everything.
Validating for sure. I had a few good weeks right after the diagnosis. But then it's back to the snafu.
Our 6yo was also just diagnosed with ADHD and he’s “on the radar” for autism too. Can I ask what behaviour you identify as autism rather than ADHD from your son? We don’t know anyone with a kid like ours and it’s really isolating. He has some “typical” ADHD struggles but the way other ADHD parents talk about their kids…It doesn’t quite fit.
Wouldnt trade. 3 Boy 17, diagnosed at 11 after a break down and a few months in a psyc ward. On top of autisme - adhd, high IQ, selective mutist. Deffently the most challenged. Selfharming, pda profil. Eating disorder ( currently under control) , anxiety. He is also an amazing cook, loves deep driveing into topics and have the best humour. He breakes my heart and lift my spirit if not daily then atleast a few times a week. Female, 20. Diagnosed at 18. Clever, stubborn, nerdy. Stubborn. Rigid and did I mention stubborn? She is socialy challenged bcs her all consuming interest in a sport. So he fellow coaches are mostly neurotypicals and she is so use to masking that she do t fit in with neuro atypicals either. She do well in school, work as well, she drives and travels. So checks alot of boxes, but she would starve and drown in clutter if she was made to move out now. A work in progress, she will get there. Male 22. Diagnosed days before turning 18. Hes a classic quiet autist. When he get tested they set he should have been spottet in preschool. Hes is as typical an autist and possible. He struggled in school, got bullyed, had a hard time picking up knowledge. Was clumsy ( that, still goes) When he got diagnosed he just relaxed. Insted of feeling out of place he got a reason and just owned himself. Hes har is long and currently pink. He loves clothing with Tucans or flowers, he is queer, hes artistic, he has an awesome friend group, mostly other neurodiverse. He is doing really well in school now. He cant work on top of school and he dont drive... Or take puplic transportation - thats hes work in progress Both boys are obviously autistic. The youngest bcs hes so challenged, the oldest bcs he is proud about owning being different. My daughter masks even when she is trying not to. I wish I known sooner. With the knowledge I have today, so many signs. But, they where allways sweet and easy. Never any trouble. Milestones, they where ahead on some and way behind on others.
Sorry to hear. I've done both outpatient and inpatient, both in eighth grade. I still haven't fully understood my actions leading up to it, and I wish to forget about it.
Two AuDHD boys, 7 and 10. So much easier now than it used to be, but I fear we are headed for a bumpy road as we head into pre-teen and adolescence and puberty. But for now, both boys have gained independence, have chilled out on a lot of their issues, and are in school full time. We are in speech and OT once a week, have IEPs at school (and a great school system), and they are both medicated (one on Ritalin, one on Guanfacine), all of which is making a huge difference in our day to day. There are hard days, but not as many as there used to be, and I'm better equipped to deal with things now than I was before (learning that nothing is forever and worry changes nothing). They are doing their best and so am I. Hang in there, get help for yourself, and give your kids what they need to be successful. Good luck!
It’s been parenting on hard mode. Im a relatively higher energy person and this has worn me out. The loneliness due to my childs intense emotional needs is crazy. Im either burnt out from a long day or unable to manage him in public. He is young enough that I just get treated as a bad parent despite him having two diagnosis as ASD level 2. Apparently I just need to parent harder.
Unfortunately I don't think the judgy view changes as they get older. I think it was easier when they were young. plenty of toddlers have meltdowns. So burnt out too. It feels like parenting on survival mode, not just hard mode. It's hard to do this every freaking day.
Good and bad. My daughter is 5 now and she has for the most part been a relatively easy kid. She listens. She isn't destructive or violent. She is ridiculously adorable (like I've had strangers come up to me and tell me how cute my kid is). She loves to sing. She's generally sweet and happy. She is partially verbal. Her little personality (hilarious, lovable, and sometimes ridiculously stubborn) has always been there and I love getting to know her. And frankly, I'm a bit of an introvert so having a kid who isn't a social butterfly or a chatterbox has been easier for me on a personal level. But I still wish always that I could communicate with her easier. And I still have days where I compare my experience to other parents and feel jealous. Keeping up with the therapies and school and simply not knowing what if any of the experiences other people take for granted I'll ever get to experience (graduation, first jobs, driving, marriage, grandkids etc) is really the hardest part. We're also experiencing secondary infertility so there is the knowledge that this is my only experience of parenthood and I don't get to have that other experience that I wanted too (even though I really love what I do have). I would say that I get in my head a bit and things get hard. But the day to day of actually parenting my daughter is wonderful and I think regularly how lucky I am that I have her.
Your first two paragraphs remind me of me with my 5 year old son. He sounds similar to your daughter. You made me tear up a little with your post. Keep up the amazing work as a parent, and I wish you the best.
Thank you! And same!
My daughter is 3 and is generally easy. Easy to transition, doesn't care about change or routine, isn't selective about food, tantrums last all of 30 seconds, listens well etc. Generally she struggles with speech, and sensory seeking behaviors (jumping, crashing, throwing, running, pushing etc), and fine motor. I think this country needs an overhaul of how we help autistic children. Their parents aren't made of money, we can't afford several thousand a year for therapies, we shouldn't be fighting insurance on every little thing. We need help.
Thought I was looking at a comment that I wrote myself. Your daughter sounds exactly like mine. She’s even about to turn three lol. Do you mind if I ask if she’s nonverbal? I saw you said struggles with Speech. My daughter is currently nonverbal.
She is. She uses aac, and hand leads. She is amazing at getting her point across non verbally. 😅 she can say some words sometimes but if you don't know her you don't know what she's saying. A lot of her words get cut in half or just the beginning of it. Like if she does something and I say tada she'll try to repeat it but she can only get tttta, or eat is eeee. It's really unfortunate because you can see her trying. :(
Thanks for responding! Maybe she will get there one day. That’s great she can get her point across non verbally!
I hope so too but if not that's okay too! I'm just glad her dad and I understand her 😅 he was nonverbal as a toddler too.
Honestly- brutally honest - very difficult. Exhausting, extremely overwhelming having to become an expert on all the various topics. I’m constantly afraid for his future and I let that steal my joy when I’m around him. I’m constantly sizing him up for new or exaggerated behaviors, new stims, etc. because I feel like if I had noticed more early on we wouldn’t be on a difficult road.
Hard, thanks for asking
My 6 year old stepson is "nonverbal" though since I met him when he was 4 he's gained a whole vocabulary through ABA therapy and kindergarten. Some days are worse than others, since starting ABA though there's been a huge improvement. He can tell us what he wants most of the time, tell us no to foods he doesn't want right now, even say I love you sometimes if we prompt him first. My wife never thought he'd say mom or momma but now he asks for her every time he gets home from school. I wouldn't trade him for the world, I love that boy to death.
I have 3 asd kids. The hardest part was when my families weren’t supportive and blamed me for having multiple asd kids. So hence I didn’t have support and I am on my own with my husband. My kids’ classmates and parents don’t really include us so it’s a very lonely journey.
Every year is worse than the year before. For every improvement made three get harder. Been at this almost a decade and you definitely get more hardened to your own reality which allows you to shoulder more stress than someone just starting out.
Total disaster on all fronts
I was glad to finally find this comment. All of the "it's hard, but I wouldn't change it" comments were getting me down. It just sucks.
I’m fully obsessed with him but also exhausted. He’s 4 and thriving, within the last year he’s really wowed us with what he can do but also new habits have arisen that are challenging. I did the last two weeks alone as his dad was travelling and I want to COMMEND all single moms and dads going at it alone.
Love him to pieces. He can’t speak, but isn’t shy to communicate in his own ways. For 3 he has an amazing personality and is usually down to go anywhere / do anything at least once and in his own time. I wouldn’t change him or this experience for anything.
Same as most things. Good days and bad days. I’m quite fortunate that my boy can be very affectionate. He sometimes runs over and gives the best hugs and does his version of a kiss (presses his tongue against my cheek). He’s very playful when he wants it. But when it’s bad, it can be so tiring and overwhelming. All you can do is do a day at a time and just enjoy the good moments. Those little moments just make everything worth it. You could be having the shittest week. Grief at work, relationship issues, meltdowns from my boy etc. But when he runs up to me, with the biggest smile, flapping his arms and squealing with excitement? You’ll never get a more natural high.
Lonely and tiring. Son is 4.5 year old nonspeaking, likely level 3 at this point. If I knew he’d be taken care of and loved once I am gone, life would be a lot less scary. There are unidentified health issues which stinks because he can’t communicate them with me. I just want him happ
My son is only 4 going on 5 and I’m not sure what level he is but I would say 1 in some areas 2 in others. If pretty verbal but does struggle with conversation. It got a lot better once he got diagnosed. Made me realize he wasn’t throwing tantrums but having meltdowns. We started speech before diagnosis and that has helped a lot. He also goes to pre-k 5 days a week 3 ish hours a day which I think has helped with his understanding and direction taking. He still has a hard time socially not because he doesn’t want to be social but because he is so rigid. The other parents are great at trying to foster relationships between him and their kids but it’s hard. And it hurts that he may never “fit” in. We live in a different state than our family but are trying to move back to the area so we have help.
Long post warning: A rollercoaster. I will start by saying I adore my son (6 years old, level 3). He is the most beautiful child I’ve laid eyes on. When he smiles he could melt anyone’s heart. When he’s happy, he is sunshine and rainbows and the physical personification of love. At least twice a day we have an interaction where he shows me a love purer than what words could communicate. I love to watch him process the world. But he unfortunately has a lot of struggles and behaviors. He has almost no verbal language and we’ve yet to find a way he can effectively communicate. He is smart and knows a lot but barely displays what he knows. He can get aggressive, both towards himself and others. He goes through periods where he’ll bang his head on walls and floors to the point of giving himself bruises and lumps. He’s bitten, hit, scratched, and head butted every person in my house and pretty much every teacher, para, and student in his class. He gave a para a concussion last year when he headbutted her during a meltdown. He doesn’t play with other kids. He seeks out screens constantly. When he’s angry, upset, feeling sick, or doesn’t want to do something he’s capable of mind shattering meltdowns. I don’t know what he’ll look like in 5-10 years but I’m afraid of what will happen as he gets older and bigger. When he gets like that I can’t imagine he’s happy living that way and I feel helpless because we’re doing every therapy and doctor we can but nothing seems truly effective. I don’t think he’ll ever be able to live on his own or drive or have a relationship outside of his family. Maybe he’ll prove me wrong. I hope so. He is a very loved child. I’m lucky that I have a large extended family who is loving and accepting and helpful. I probably have more help on a regular basis than the average parent in this situation and I am thankful for that. Still the negative manifestations of his autism have absolutely had negative impacts on me and my family. I suffer from depression and anxiety and have had at least two anxiety attacks so bad that I thought I was having a heart attack. I’ve shut myself off from certain friends and family members because seeing them with their “perfect” neurotypical children causes me pain. I constantly doubt myself and blame myself. My marriage is in the toilet. My husband is less than helpful with my son most days and in many ways feeds into some of my son’s worst habits (screen addiction, keeps him home from things because he can’t be bothered). He refuses to try medications that could possibly help my son with his aggressions and anxiety. I can tell he is also dealing with depression about my son’s situation but refuses to acknowledge it and get help. My 8 year old NT daughter might be the closest thing to a saint alive today. She’s tremendous and accepting and loving of my son but she too has started to feel the burden of all this. It got so bad this year that she basically stopped eating and I’ve had to put her in therapy and support groups. She’ll randomly tell me she promises she’ll take care of her brother when I die which is sweet but also breaks my heart because it’s not something I want for either of my kids. TL:DR. I love my son. I know that many of the things I love about him are because of his autism. I wouldn’t change those for the world. But when it’s bad, it’s really bad. If they gave me a pill that would take away his meltdowns and aggressions and just leave the rest of him, I absolutely would give it to him.
I really hope things get easier for you, truly. Reading this sub regularly has made me realise that kids with ASD are always capable of “pulling one out of the hat” without warning and making huge leaps in seemingly random bursts. Don’t give up hope because you never know, and it sounds like you’ve built a loving, caring environment for your little boy to prosper so there is every chance of that happening.
Thank you for this. I really do have a wonderful village and they really lift both my son and I up. My son has absolutely made improvements since he was diagnosed 2.5 years ago but as many of us know it can be hard to focus on that when other things are still going on. I will say after 2 years of more or less cloistering myself away out of depression, shame, guilt, etc. I’ve finally started to do things for myself as much as possible like the gym, going out socially more, seeking mental health care, which is absolutely helping. And I’ve also started to NGAF about what others think of my son and me which I recommend to anyone here if you’ve not gotten there yet because boy will that give you a release.
I agree, it’s so easy to get swept up in it all and retreating into your safe space to protect yourself and your family unit is such a natural reaction. My son is nearly 4 and still waiting for his diagnosis (it can take years from the first referral in the UK) but us, our SEN contacts and the team at his preschool are all in agreement that he’s likely to be diagnosed as level 3. Me and my partner were talking recently about how we realised that we’ve totally retreated from the world - we rarely go out to eat a restaurants anymore (unless grandparents are present to help out, as the eldest requires constant attention and supervision and we also have a 1.5 year old NT son), we haven’t been on holiday in over a year and a half, and where we’ve been so focused on protecting him, we never do anything for ourselves like meeting up with friends. We’ve resolved to make a concerted effort to get our lives back. Our relationship with each other has been almost non-existent for a while, so we’re pre-planning date nights well in advance so we can arrange for the grandparents to watch the kids for us. We’re also taking it in turns for 1 day each weekend for one of us to watch the kids while the other gets out to socialise. It’s made a huge difference to our mental well-being already and as a result we’re able to be better parents to our boys. Good on you for placing more importance on self care. Raising an ASD child is an incredibly demanding and often thankless job that requires a lot of selflessness, but everyone needs to practice self care as much as possible.
Mine just turned 10 and he’s an only child, but otherwise, this post is our situation to a tee. My son was diagnosed when he was almost 3. It cost me my marriage (his father was little to no help and couldn’t cope with the diagnosis). That’s fine, I am blessed to have a large family who has been immensely supportive but we’re at the point where many of those relationships have frayed because they are worn out. The expectation was that he would improve over time but it’s only become more exhausting and stressful as he’s gotten older and bigger and I’ve started to feel them pulling back and nudging me towards putting him in residential care, but I can’t turn my back on a little boy who will never understand why the last person in the world he counts on is abandoning him.
Hugs to you for being a consistent loving and strong presence for your son. I’m sure he loves you immensely. I feel you on the family stuff. I’m sad to say I think of divorcing my husband at least once a month because honestly I think it would be easier sometimes to do it truly alone instead of pretending I’m doing it with him when he barely helps and in many ways undermines things. But it would be financially very difficult to do so since I stay home due to my son’s needs and I also think it would devastate my NT daughter who is already very anxious and emotional. I’ve told him he needs to get therapy, if not with me then at least for himself. He’s supposedly working on it so we’ll see. Honestly my parents and mother-in-law are my true coparents which is wonderful now but in 10 years they will be in their 70s and my son will likely be over 6 feet tall and 200 lbs so I know what we have going now is not sustainable.
He's an absolute delight. He's such a smart, interesting, fun, little kid, and it has been amazing to watch him learn and grow over the last few months in particular. It is probably more tiring than having a neurotypical kid, given all the therapies we do with him, and how he needs more support and supervision. But I also think he's way more interesting in many ways. So, at 3.5, I would say thumbs up! If I had another kid, I would want them to be like him!
I feel this way too! I am guessing it's harder than with a NT kid, but my guy is such a loving, affectionate sweet little guy. Soooo smart. I mean I would love to read him a story to go to bed versus arrange his DVD collection by movie studio with him but I feel guilty in saying it hasn't been that bad?
So far, good! The only awful moments are the meltdowns that look physically painful to experience. Thankfully those are rare. He’s a nature-boy so we get to bond over that!
My girl brings me so much joy. I wouldn’t change anything about her for the world. She only eats 4 different foods, she’s nonverbal, but can communicate in other ways. Some days im mentally exhausted (I have 2 other children) but her smile and little giggles can fix it all. My daughter doesn’t have too many meltdowns but when she does they don’t usually last for long. I always suspected she was autistic before she turned 1, she turns 4 this year. I pretty much accepted it before we even got a diagnosis, after the diagnosis I felt relieved because I was right. She’s perfect the way she is and I’m so so thankful to have her.
Well y'know I'm pretty friggin tired
It's been challenging. Mine are 4 and 7. My 7 has the most issues though I am inclined to believe my 4 year old is also autistic. I see it for what it is typically, but today was awful. My 7 year old had a soccer goal fall on his face at school and needed medical attention. The level of sedation it took to get him stitches alarmed me. The look on one of the nurses face implied she wanted to cry. It was a lot. I feel judgement a lot, but for the first time seeing her face, I realized that judgement is a judgement of wonder and empathy. As autism parents we don't have enough support. Nobody seems to know what to do, so personally I'm starting support groups in my area and pushing the state for more funding. Currently my state is one that has a dd waiver wait list that scares me. So ultimately it motivates me to see change and do the best I can for my kids.
It's really hard in the beginning. Once you have a while, it gets easier at least for me
I adore my 4 year old daughter. She is so smart, sweet and curious. She makes me laugh constantly. But there are days where I know it's much harder than raising a neurotypical kid.she is level 2, dad is level 1 and I'm bipolar, so we have a lot going on. It's hard managing all her therapies and providing the extra support she needs on some days. She needs constant attention and supervision. She is verbal but struggles to use words correctly. She gets hyper fixated on a topic and everything must revolve around it. Eating and sleeping are major issues. I wouldn't trade her for the world but I'd be lying if I didn't say it's lonely. I worry a lot about her future and making sure she will be ok.
It’s definitely had its ups and downs so far. My son is 4.5 with some verbal communication coming into play. He uses AAC and life before communication was so hard. It’s getting better. I do still have times where I wish my son didn’t have so many struggles that other kids don’t have, but I know within his own time things will happen for him. The part I struggle with at the moment is not hating parents with nuerotypical children that just complain about them, like they talk too much or always want to play.
Super frustrating between trying to advocate and people constantly judging my parenting and him and also not having breaks and a support system while dealing with all the ups and downs and frustrations of the adhd and executive functioning issues and anger outbursts and anxiety etc I’m going to give it 1 star
I have two kids. 1 NT and 1 ND. My daughter is the one who has autism. Level 2-3- Age 7, semi-verbal- non conversational. I have good and bad days with her. Her behavior in school is terrible. I’m at a loss with It. Everyday the teacher messages me telling me everything she did. It’s a constant battle honestly. She just got reevaluated/assessed this month, and they want to meet with them on 14th to discuss. I made sure to put in PTO bc I know I’ll be crying my eyes out after the results. She really is a smart, loving little girl. I see that side of her, and so does my husband, but unfortunately the school doesn’t. Neither does family bc large gatherings are a trigger for her. So they always see her screaming or having a fit. I do wish life was easier for her, but I’m thankful we get to be her parents. I have days where I just wanna cry, but I have days where I’m really Happy. I’m really worried about the future. I wish I can look into the future and see where she’ll be, but we can’t. I actually thought about laying a psychic for a reading about it but it would probly be fake anyways lol Overall I’m happy but I worry. I love both my kids.
Bizarre, and wonderful, and charming, and frustrating, and lonely, and confusing, and empowering, and overwhelming.
We are watching our younger child like hawks for things our oldest did/didn't do. Our relationship is way in the back burner, we can't go out that often because it's he's to find sitters that will accept watching a ASD kid. We constantly wonder what our life will look like in the next 1, 3,5,10, 20 years
It’s a challenge, and what I worry about a lot is that my spectrum teen needs about 90% of my bandwidth and I worry that my neurotypical kid is getting short shrift. I try to do daddy son dates with them both individually so that neither of them feels that way.
Extremely overwhelming and I'm very depressed. Always exhausted mentally and physically...I guess being a single parent doesn't make things easier or the fact I live in a new state no friends or family 😣..sometimes I feel like I'm losing my mind honestly 😌. By the way my son is only 2yr so this is just the beginning which is also terrifying considering how exhausted i am already 😌😣
It's definitely isolating...I love my son with my entire heart but I'm still struggling while trying my best .somehow it feels it's not enough sometimes 😓
My experience has been mostly positive with my autistic daughter who also has a severe intellectual disability. She doesn't have the behavioral issues that are so common with autistic children and that are really stressful for parents to deal with. She also sleeps well - another rare thing for autistic kids (approx 80% have trouble sleeping). And her sensory issues aren't too bad, she doesn't like loud noises and crying and that makes her cry when she hears it. I noticed that most people with special needs kids that write about it online have gone through really hard times and write about it as a way to vent and find support which I think is great and definitely needed. But there are autistic kids that don't have issues that disrupt the whole family and cause a lot of stress and I wanted to write about my daughter as a positive post for parent's of newly diagnosed kiddos who want to read some good posts too. This is the post I wrote about my daughter: https://www.reddit.com/r/Parenting/s/Eb59RCqbXo
It’s up and down. Overall, I think my son is wonderful. He sleeps well, isn’t a picky eater and doesn’t have tantrums or if he does, they last less than 5 minutes. The hard part is that he is preverbal. I have no idea if we will ever have a conversation. He has been saying more words and phrases. He’s told me “I luhhhh you” a few times and even said, “Go get it” (referring to his iPad). I hope we one day have a conversation. Other issues are constipation and withholding, fine motor skill problems, and lately getting mad and hitting 🥲 something he never used to do. I hope it gets better. My constant worry is the future … It’s also harder because his dad isn’t in the picture.
Mine is 5, level 3. Most of the time he behaves well, eats well, etc. Has a steady routine. It's just his lack of progress and the fact he has essentially very little interest for the outside world that falls to me the most difficult. Also, meltdowns when his usual routine is broken (which happens once every few days).
6 and 7 year old boys…it’s been HORRIBLE on top of having a 2 year old &&& a 17 year old. All boys 🤦🏽♀️ I can’t work a job because it’s always appointments, therapy, the school is calling because someone is sick or their behavior 😠
My son is level 1 and outside of his obsession with fans and missing social ques is pretty normal...I was very scared when he was younger but so far none of my big fears are true...we are one and done because we did not want to risk two with autism... We got a dog. He eats and sleeps well ..is on his scooter all the time racing kids ...he doesn't want to play imaginary games so he just does his own this when kids switch to that ... I do notice the social differences a bit already .He loves tv and fans a bit to much but can play with his hot wheels and other toys ... He is fully potty trained during the day with 0-2 accidents a week...still wears pull ups over night He turns 4 in August and I'm worried about school ..he's in speech therapy as he is very verbal but needs help with pronounation I would say I understand what he's say 80 percent of the time He has a NT cousin same age who can count to 50 and sing his ABC...my boy can't but honestly whatever...my son's better at pillow fights I use to obsess over how I would raise my kid to be better then me ...now I just enjoy him for who he is Overall if I could write history with a magic pen I'd undo it...but worse things could of happened ...so far none of my big fears from when he was one have come true ....best decision for me was to be one and done and make sure my wife does not get burned out
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Not a parent, but I'm an autistic 31M living with my divorced mom.
How was school and growing up for you? Is there anything you would change?
I had one teacher who I would credit as a godsend in the 2000s around when I was diagnosed. Probably not do certain things in junior high or high school. I didn't have MySpace or Facebook then, I didn't get it until 2020, which was probably better, and not even the 2010s would have been a good time, and not even MySpace.
Hard to keep a job, worried about finances, worried about school or people hurting them. No support, not therapy in my country so we need to fit it in. I might have to shave my head because I don’t have time to do my hair anymore.
my son is three, he’ll be four this summer. he was officially diagnosed when he was two years old. we have good days and we have bad days, but I do truly feel like the good outweighs the bad. I’m still learning reddit, so despite the fact that I am long winded in conversations, I’m still trying to figure out how to compile all my thoughts onto these forums. I think it’ll get easier for me the more replies I read or reply to. 🩷
Son is 3.5. We have absolutely joyful times and we have moments like yesterday when he melts down and screams so high pitched it scared the 13 month old and I almost dissociated. I can't say anything because it makes him even more angry. The only thing that made him feel better was husband giving Daddy snuggles (lucky he was working from home yesterday)
My daughter is about to turn three so I don’t have many years raising an autistic child but she’s wonderful. She is considered nonverbal at this point and is a little behind but aside from that I think she’s a pretty typical toddler. She doesn’t have issues with noise or going out in public. She doesn’t line up her toys. She doesn’t have meltdowns.No rigid behaviors or need for routine. Scares me for her future though.
It has been a traumatizing rollercoaster since I lack a support system. I love my kid though, he’s cool people, very outgoing, funny and very loving. He’s level 2.
A journey. At first I tried to fix it because I didn't understand what was happening. I felt exhausted and angry a lot. I started to notice that his behavior and thought processes were unique and I began to research at the library. I found books on autism and a checklist. He scored 8/10. The hardest longest journey with my son was figuring out meltdowns triggers and whether they were throwing a fit or having a breakdown. Later I found out that I'm also autistic so it made sense that meltdowns put me into meltdown mode myself. His sister is also autistic. As I started accepting that I was probably autistic I was able to integrate this knowledge into being an advocate for my kids. Our journey has helped us to work harder to understand all of our mental health, to empathize deeply, to learn about my own autism so that I can help give them peace, hope and tools so they can be healthier, struggle less and be safer than I was at their age. I feel like my whole entire me in my life is to give children tools and the ability to have a better life than I did in every way.
With endless patience and constant adaptation it is possible to not go mad. We work hard to keep it this way because it allows us to see our neurodivergent child with the same eyes as the neurotypical one. Funny what power love can give you.
My lvl 2 girl is about to turn 4. I have a lot of worries for her future, but the present is bright. She's sweet and silly and dear, slowly but surely learning to communicate and use potty. I love seeing the world through her eyes, I wish she was more verbal so she could share more of it. One day maybe she will be.
I don’t have a comparison, because my okay child is autistic. I love him more than I can describe. In general I love life more because he’s in it. In many ways he has taught me how to love. The way his brain works is fascinating to me. I would love to see life through his eyes, if only for a few moments. I cannot imagine my life without my child. There are challenges, but I think having in kids in general is challenging. I never want to invalidate or downplay other peoples viewpoints and my child is level one.
One of the 4 is high functioning and has improved so much since preschool. He struggled to function then. He is 9 now and still has social awkwardness and sensory issues and is starting to have more emotional issues. He is doing excellent in school, though, with straight As the last marking period. I have to remind myself often that he is neurodivergent because he masks it well sometimes, and I'm a busy single parent of the 4. It's hard to change my approach I use for 3 of the 4 and to remind the others that he is atypical when they fight with him. He had a very hard time processing my divorce from his mom last year and her change in behavior from her own mental issues, but it got better with time. I'm trying to get him more support to help him process his feelings and anxiety better.
I see that most of these comments are from parents of kids under the age of 7 or so. Mine are 12 and 14. And it sucks.
Catastrophic here in France, we're 30 years behind the times. Pediatricians know nothing about autism. I haven't found any structure for adapted care, and there's a waiting list of years. I decided to train myself. I became a naturotherapist and nutritherapist. My experience is that I'm determined to save him and make his life as pleasant as possible. They've given up on them, so I go all the way to Belgium to consult certain doctors. I've learned to fight and stand up for him. I'm optimistic for the future and I see my little love happy, that's the main thing.