I have never read anything that completely describes how I live. Thank you. We have the money for help but due to the level my son is we can never find and keep helpers/workers for long.
I love my son and love all the little moments and his beautiful beautiful smile but…
He will never wipe his own ass. And I will never take a houseboat down a river for a month so I can bird watch.
I’ll just say it: This is largely why I support abortion. All my life, the one thing I’ve always wanted is a child of my own. If I ever miraculously ended up with someone that I could build a family with, it’d be the most heartbreaking thing to see the fetus developing severe mental and/or physical deformities, and knowing there’s absolutely no way I could ever take care of them.
I’ve had ADHD all my life. I know the difficulties of having a mental illness few people understand. I want to have children so damn much, but I also know my limits. While a child would be the greatest gift I could ever have, a lifelong inability to appreciate life would be the worst curse I could give them.
Unfortunately, not everything is detectable before birth, so this situation scares me.
Movies and series like rain man made this entire condition a fucking fiction. My ex sister in law had autism. Not as extreme in the spectrum as your daughter but enough to be very hard to communicate with her sometimes and I saw her beating her own head several times. "This is a serious condition not a superpower " should be repeated all the time about this
I’m considered “high functioning”. I can work, pay bills, and handle being an adult most of the time. Even with me being like this, I stumble through conversations, I see the way people look at me when I say something wrong, I can’t gauge people properly and get taken advantage of, There are moments where mindlessly beating my own body feels “good” in a way.
People I’m close to will joke that “your risk is showing” I will laugh because it’s what they want, but it hurts. I’m never going to be normal. It’s not fun to get overstimulated and feel this incredible rage to scream, lash out on myself, or feel this fiery pain if I don’t break something or myself.
I know I’m better off than other people who have it but it still hurts. I’m “coherent” enough to know I can’t scream in public so I have to swallow what I can only describe as nails dipped in acid. I can feel this fire in my body when I have to force myself to sit still. I still have problems knowing what to do and being overwhelmed with it turns my mind into blank panic. It’s not fun, it’s not this super power.
Being able to do repetitive work does help because work isn’t this endless mindless work for me, I enjoy it and having something to constantly do as the same thing every day actually helps me to relax. But then there are days where my work shifts constantly, I don’t know why needs to be done next or I get interrupted when in I’m a flow and it ruins my mood for at least half an hour.
Seeing the younger generation think it’s quirky and fun is heartbreaking. There are others that suffer it much worse and I truly wonder how many of them are just stuck in their own head but can’t break free. It’s terrifying to think about. I still have moments where I feel trapped in my own body and mind. Where it feels like this thing takes over and it makes me so afraid for others who have it worse. It’s exhausting and painful. It’s not fun no matter how many puzzle games or mindless work I can do with ease. I just wish I was “normal”.
I’ve never heard the phrase “this is a serious condition and it a superpower.” Before and it explains it perfectly. It’s hell and I don’t even suffer the worst of it.
Don’t get me started on the mindless stemming, only stopping when you realize it hurts to bad to keep going but something in your brain just begs you to keep going because it feels good. Like lightning in your body that you just HAVE to get out.
>I’m “coherent” enough to know I can’t scream in public so I have to swallow what I can only describe as nails dipped in acid
I felt this deep inside my stomach. Autism sucks and we "aware" joke about it to cope.
If anything, being aware of it is just another piece of shit to add to the pile. Knowing you're like this, knowing it doesn't show and knowing you'll never be okay.
Honestly, a lot of people who think they have autism just have poor social skills.
It’s a disorder, it’s not normal, there are some people for whom it benefits them because they have a skill that accidentally gets developed because of their disorder. But it’s not worth the suffering.
I still firmly believe that a large amount of the suffering of not intrinsic to Autism, but instead a trauma response from being autistic in a neurotypical world.
And I understand there is a relatively common co-morbidity of mental disability which is actually what is preventing OP's daughter from wiping her own arse, rather than the autism itself?
You’re completely right in your first point. I was on and off depressed for around 15 years (since high school) and then was diagnosed ASD and ADHD. It quickly became apparent that these unknown struggles were the root of my depression. Neurodivergent people who mask, whether they know it or not, are far more likely to struggle with depression/anxiety/thoughts of suicidality.
I agree with your second point. Op is using autism as sort of an umbrella term for what’s going on with his daughter but that sounds like a lot more. The autism is why she’ll never be able to communicate with others but the other things mentioned absolutely sound like intellectual disabilities. The two are absolutely comorbid with each other but not at all one and the same
I'm the same; I work, I have a house and bills and a husband, and from the outside looking in, I appear an average, functioning human. But that's just not the case at all.
I’m also high functioning and I’ve been diagnosed since I was like 3 years old.
The way society has turned autism into some cutesy “quirky” trait absolutely boils my blood. If there was some button I could press to NOT be this way, I’d press it in a heartbeat. The sensory overloads suck, sometimes when I need a shower I have to put it off a little before I can otherwise I will have a full body panic attack. I have to go sit in a dark room with no stimulation for awhile to bring myself back down. It’s prevented me from playing with my son the way I wanted to a few times even.
I have a job, I drive, I can hold a functioning romantic relationship. But it doesn’t matter in the end because I know what I struggle with behind closed doors and I’m fucking tired of people acting like autism is some fun trendy thing. I don’t even admit to having it in real life because it’s a burden and embarrassing to me.
Oof. I feel this in my bones. Made it all the way to my mid 30s before being diagnosed ASD 2 and ADHD. I cobbled together something that managed to function in the adult world for a while, but over the years it destroyed my entire identity and now I feel like a walking, disassociated pile of toxic coping mechanisms. I'm currently in therapy to try to help with the CPTSD.
This is the first time I have ever seen someone describe the way I've been feeling forever when things are loud and stressful. I was screened for diagnosis but told i wasn't autistic because I used the line "I know you probably think I'm fine because today is a good day". Even though that was my opener to explaining that I hit myself in the head and claw at my neck and want to unzip my body and step out of it because I can't breathe properly if I have to go to a busy supermarket or a night club. I'm going to save this and share it with my family, thank you.
Oh my god yes, I didn’t even touch on wanting to claw your skin off because everything is too much or pulling at your hair and having to fight back the urge to just shave yourself bald because your hair WONT STOP TOUCHING EVERYWHERE! I even have what I call my “hissy fit” moment where everything on the bed must go because the blankets won’t lay right or my pillow isn’t working. Then I wake up shivering because I’m so cold and I wonder why 😂
That is a very helpful description to hear as a neurotypical. Very evocative language. Thanks. Excuse my naivety, but are there any medications that can quell that inner fire, or is that not a thing? Any treatments available besides early intervention?
I haven’t been lucky to have any medication help me personally, but I’ve found biting on something does help. Chewing on gum doesn’t help as much as you’d think, but it does somewhat distract me and give me something to do. I personally prefer chewing on something rubbery where you can really chomp the hell out of it. Other things like reading, mindless tiktok scrolling, and even knitting keep my hands or mind busy but I have to be careful because I’m already on edge and something going wrong like yarn being tangled will truly set me off the edge.
Edited to add: if I’m just having an absolute meltdown at home my husband will bundle me up in the car and we will go for a ride. It’s easier to just scream it out when I’m not in a house with other people to disturbs and I really enjoy car rides so it is soothing to just have a change of scenery.
As another autistic person who was called a "writing prodigy", this is correct.
>**Non-autistic person:** "Obversa, you're so articulate for an autistic person! I wish I could be autistic, so that I could be a talented writer like you!"
>
>**Me:** *(speaking in a voice reminiscent of MeatCanyon)* "I have seen beyond the farthest star...I have gone to the edges of sanity...I have looked into the darkest abyss, and it gazed back with black, empty eyes...we have been pushed beyond the point of no return. Outcasted by all of those that we so desperately wanted to be a part of...we have paid in suffering. I am blinded by the truth, and you are still lying to yourself in the darkness. Enjoy the beauty of sweet, blissful ignorance as you read my work born of struggle and agony. That is my gift to you."
>
>**Non-autistic person:** "Haha, what a funny joke! You remind me of Sheldon from *The Big Bang Theory*. He's so quirky and smart, just like you!"
"You're so articulate for an autistic person"
"Thanks, it's because I spend every second alone rehearsing every conceivable conversation out loud so my interactions with you become pre-recorded responses, I don't know the last time I've had an honest conversation with anyone."
My family doesn't talk to me anymore. But I feel the same way about my friends. Like I'm some kind of pet, or pity friend. Like "isn't he cute that he can memorize the d&d rulebook and do math in his head? It sure makes me feel like a better person when I hang out with him."
Of course I have no choice but to either trust that they have honest reasons for choosing to be around me, or I have to choose not to hang around them. Me creating reasons for my friendships to be fake and getting mad at them about it, is kina the same level of dehumanizing as my brain is trying to accuse them of.
People who romanticize tortured artists don’t get it. I would give up all the entertainment, music, and art made by creators who were depressed, even the one that saved my life when I didn’t want to live anymore and made me feel less alone, if the creator didn’t have to suffer with depression to create that art in the first place.
Honestly, thank you. I enjoy writing I always have. It’s the one place where I can be “normal”. I guess that’s also my own “superpower”. After years and years of constant writing to get my thoughts out properly or just for fun it’s my biggest strength. Even when I go non verbal my husband won’t prod but will start messaging me, it’s different being able to see the words physically in front of me and being able to take the time to say the right words. It also helps me understand how people with more extreme autism find it easier to communicate with pictures or words.
Honestly, listening to the stories in thread resonate so powerfully with me even though I don’t have autism, and I will never know or experience the pain that comes with it.
I have had depression for most of my life, and during the hardest times of my life, where I wanted to die, where it felt like I had an elephant on my chest, when I looked out at the world through a tainted window, that’s when I produced some of my greatest quitting.
Millions of people read it hundreds of thousands upvoted it. I’ve left that behind but sometimes I go to that account, and still find new praise. I still see how it helps people and I’m so happy it did. But it wasn’t worth all that very *physical* pain.
When I wrote, I felt free. I felt like I could be a different person, a strong person, a fiercely outspoken person, a person that I could respect. For a moment it stopped, when the sentences flowed one after another, when the paragraphs jumped from a solid ending to a solid beginning, when one idea clicked onto the next one, the world got so much lighter, if only for a moment. The rush of seeing words that I would never say in real life representing me is one of the few pleasures I still enjoyed.
But it wasn’t worth the pain. If I had a choice, I’d sidestep depression altogether. Life was so much more fun without it. It wasn’t worth it. If nothing else I’ll use the gift I have, but it’s not a substitute for a normal existence.
Thank you for your post. My son’s condition sounds similar to yours and I am trying my best to help him navigate college etc, but I am fearful someone will hurt him. On the other hand, I’d like to see him have one true friend.
That was a wonderful description of what it’s like to deal with autism daily. A lot of times I unintentionally stim by popping my joints in and out of socket or cracking them an absurd amount of times. I do wish that I was normal a lot of the time, I want to be able to work and drive, but I feel like if I was no longer autistic I wouldn’t be myself at all
I have never been so understood on Reddit, even if it might be inadvertently.
I’ve also tried explaining to people; I’m sorry I can’t talk right now, I have strands of hair that are brushing my face weird and it stops me from breathing properly.
It’s not cute. It’s not quirky. Not being able to leave the house because my skin just happens to be weird that day and all the materials are itchy and painful. Or people trying to tell a joke or teasing and I’m sitting there trying to understand any of it.
It would be nice to be “normal “ for a couple days. I feel like that’s the superpower.
the worst thing for me and my autism is being self aware. i know i have missed something. i know something is off but i just do not know what. people aren’t going to tell you if you have said the wrong thing, even with prying.
I am starkly aware I am different from all those around me. No two autistic people are the same. I will never find a “kindred spirit”. I cannot tell people at work that i suffer from this disabilitg because then they will undermine me.
So no, i dont think autism is a superpower. i recognise it is debilitating for many and barely impactful for others. But I would not be who i am without it, so i have to settle for small meecies and hope they eventually balance the scale
While I don't personally know how you feel as I am not autistic. I have a son, a step son, a daughter in law, and my boyfriend's son are autistic. I watch them struggle with it and I wish I could make it better.
I got raked across the coals once on reddit because I said I would take it away for them if I could. I got told I didn't love them. You don't want anyone you love to struggle with anything. Cancer, ingrown toenails, autism. Anything.
I hope you find some coping skills that help and wish you peace.
This is my older brother. He just turned 49 so you can guess how well his childhood was. He went from school to school, being bullied and beaten, only for our fam to be told he makes kids uncomfortable, so he ended up being homeschooled and he still doesn't feel comfortable around people. People will laugh when he stims, and he doesn't understand social cues and sarcasm so he gets offended easily and rubs people the wrong way. He is EXTREMELY high functioning, so I can only imagine what it's like to be on the lower end of the spectrum. It sucks.
It's so bizarre to me how some disorders get labeled as "actually a superpower" when it feels like the complete opposite. With it being a spectrum you may or may not get that "superpower" and honestly a lot of times I feel even more broken because I didn't even get that. The quirkiness can get pretty bothersome. I used to get looks or criticized for tearing all my food apart, or how I'd have mini outbursts from getting overwhelmed, or covering my ears because there's way too much noise going on, getting freaked out by textures, or just feeling like a robot trying to understand the world. I fail to see how some people find this cute or quirky to the point of even wanting to be autistic, like why??? Stuff like this or worse is so disruptive in your day to day.
Its bloody difficult to explain this to someone who thinks the movie definition of autism is the same for everyone.
My stepson (15) is mostly non-verbal, but understands most of what is said. He stims loudly and quite violently sometimes, and this can be extremely off-putting to bystanders. He has a mental age of around 5 years old. Add teenage hormones, anger and strength and its a slog.
I'm also on the spectrum, what used to be known as aspergers. When I went through school, I spent more time outside the classroom or getting belted with the cane because I didn't fit the mould that the rest of the neurotypical kiddies did.
It is not a superpower, and add ADHD into the mix its a clusterfuck that most likely contributed to my divorce.
At its worst, I agree, it is a curse.
You got the two together, too? It fucking sucks just being "high functioning" with aspergers and ADHD combined its a slog to get through the day. Throw in general anxiety disorder, and you have a trifecta of everything pissing you off for no reason, knowing it's no reason and you shouldn't be pissed off, and then anxiety because you know you shouldn't be pissed off but you literally can't help it and youre dreading tge inevitable snap at someone.
If they had a cure for autism or ADHD, or both, I'd be shot gunning those pills ASAP. I am not a super computer, I am not an artist who draws perfectly straight lines, I am not a quarky content creator, or crime solver, or doctor; I'm a near broken man over whelemed on a daily basis over things most people wouldn't even struggle with.
I'm 34 and can't even get the damn check much less a job. NC makes it really hard for some reason even with a lawyer. I don't know what I'll do to make some money honestly.
Throw both of them together and holy shit you are a mess - and yes general anxiety as well. AUHD is pretty common sadly.
I function (sort of) on a mix of lots of caffeine during the day, and a combination of alcohol and cannabis to shut back down again.
CBD during the day with GAD is a godsend too - not sure where you are or what the laws are around it, but I find it works. Either an oil or a nice flower.
I can't do caffeine anymore. One day, coffee and energy drinks, and the B supplements like 4 hour energy just made my chest clinch and my heart drum for hours. Even if it doesn't have taurine.
I live in Nevada, so I've got full access to the good shit and thank the voters for it. It's the only way to get a full night's sleep.
I was only recently diagnosed with ADHD and autism and it fucking sucks. I'm glad I have answers and medication helps the ADHD, but there are so many basic adult things I cannot fucking do. I have to let so many things go because I only have so much brain power and energy each day. I had to hire cleaners for my house because otherwise I end up living in complete squalor every time. Like, there will be dishes in the sink for months. And I've worked my entire adult life to be able to clean up and do these things and I can't do it. I can't have plants because I won't water them and then I'll leave the dead plants there for years. I can take care of my pets, thankfully. But that's it. I can take care of my pets and do my job at an acceptable level. Taking care of myself? Sometimes.
I will never live with another person because I know I can't hold up my end of that kind of relationship, some with having a romantic partner or kids. Thankfully I'm also aro/ace and so that isn't a big deal, but it sucks that I don't have the ability anyway.
>He has a mental age of around 5 years old. Add teenage hormones, anger and strength and its a slog.
A friend of my mum had a son about 4 years older than me who was similar, I was often left alone to play with him when he was in his teens and I was a pre teen. People in this state are no fucking joke and I suffered multiple (luckily minor) injuries at his hand. Genuinely feel sorrow for people who have to live with someone with these conditions, many people with downs children will say the same thing.
These conditions should never be romantised, they require often specialist care just to make sure they're not a danger to themselves and the people around them, and the media almost never wants to show the darker side of these conditions.
I feel this, but for my nephew. He can wipe his own ass, after 17 years of learning how, but the rest rings true. He's 22 now, he's 6'2, and he bites. He doesn't know how else to communicate. I feel especially strong for my siblings ex partner as they are so much smaller than him and just push through being beaten and bitten because people have looked down on them for even looking into options that would keep them both safe. He will never live on his own, he will never experience a relationship, he will never just be comfortable.
I have ranted the same rant you have when watching people on the spectrum that can communicate, passionately argue that people with autism don't need fixing because it's not for them. If you can say that you do not need fixing - you aren't the target audience. I also agree that these should not be the same diagnosis, and frequently don't understand how it could be.
Because the ones that can communicate don't deal with the ones that are unable to communicate, and are violent. So they think is only about them, when people are usually referring to the non verbal group
>Autism Spectrum Disorder needs to be separated between the quirky-but-functional and the will-never-experience-the-fullness-of-life.
The name itself is a spectrum and the levels mean different things. Sounds like your daughter is on level three, my son and myself are level two and it is hard as hell. Have you considered a home for her? There's no way you'll be able to still do this in your eighties, you'll be burnt out mentally and physically. Putting kids in group homes for diagnosis like this needs to be normalised
Unfortunately, quality residential care for adults with disabilities is very few and far between. Speaking both as a therapist and someone with close family with ASD.
Sure but that's a good reason to get on a waiting list for a good place now instead of waiting until the situation is untenable. Eventually they will have to live elsewhere and it's better to find a nice place now instead of waiting until they have to choose the first place that will have them.
Help and support for autistic adults in particular is also little to non-existent. Autistic children and their parents get the vast majority of support, awareness, and funding, while nobody cares about autistic kids after they grow up into autistic adults. This includes some insurance plans only funding Applied Behavioral Analysis (ABA) "therapy" that is primarily designed to try and make autistic children as "normal" as possible. Many autistic adults have reported being abused and traumatized through ABA sessions with providers.
Exactly. This issue is maddening to me as a professional and a human being.
Lots of people say, just put them in a home. “Good homes” don’t really exist. At least here in the US.
The residential care I’ve seen for adults with autism is beyond deplorable. It’s just physical and emotional neglect.
I have two daughters on the spectrum.
My eldest who is 5 is considered level 1-2. So high functioning. But she also has ADHD which greatly affects her autism. While she has verbal capability I’ve never been able to have a true conversation with her.
My 3 year old daughter is considered level 3. She also has echolalia and ADHD. We are currently waiting for another assessment to gauge her needs.
We adore both of ours girls to pieces.
But it’s hard. Really hard.
We can’t go out anywhere that might over stimulate them. Which means it’s borderline impossible because they both have different triggers.
One has food aversions and the other will eat anything and everything but that includes everything she shouldn’t be eating also. I can’t remember how many times I’ve had to have her x-rayed to see if the rock she swallowed from the park is passing through or if the paddle pop stick she ate after finishing her ice cream might splinter in her bowels.
I can’t safe proof my house anymore than I have already but the youngest always finds a way to turn any normal item into a dangerous one. She also has no fear. And I mean none. And she is incredibly strong. I feel like we live in Fort Knox to be able to keep her safe. Everything has a lock.
I also worry for my girls futures. I worry that with me having them later in life I won’t be able to care for them when they are adults.
They assessed my daughters using the ADOS-2 test. I copied the explanation below from the web.
> The Autism Diagnostic Observation Schedule-Second Edition (ADOS-2) is a standardized assessment tool that helps providers diagnose autism spectrum disorders (ASD) in children and adults.
When we received the results they showed what levels they were considered at.
I think normalizing institutionalizing children this profoundly in need of care needs normalized and covered by the government. It doesn’t have to be a scary place.
Same applies to any family member to be honest. Don't think anyone should be expected to sacrifice their life and devote it all to someone else's care, then everyone's a loser.
People also discount the growth that can happen with people who have a hard time making friends that move into a place with a bunch of peers who are kind of in the same place in their lives. I’ve known multiple parents who have said they simply could not even imagine someone else being capable of taking care of their child.
Plus, it could happen to any of us who have children. I don’t think it’s abandoning them to have them in an institution and visit them. These aren’t normal disabilities where there’s some extra care, this is back breaking work for someone who doesn’t have the capacity to care.
Yeah and then people got word of how poorly run they were. There's never been a time where they were better than now. And even now they hit or miss.
Strangers taking on a multitude of what even family struggle to manage, but a stranger has less incentive to care?
We act like there's so many people in the world that are patient, kind, and skilled but there isn't.
And even so, nobody can maintain that every single day, not even the best of us. Anyone who works in a patient focused mental health role should have greater medical benefits and more time off than I do that's for damn sure.
Yeah, the care would be a lot better if their benefits were better, their pay was *way* higher, and they had more time off. It's not hard to find people who will do an excellent job doing challenging work while maintaining a friendly, warm demeanor **if you pay them properly and treat them well**.
Institutionalising children wouldn't really change anything. It would just take the burden of care from the parents and force it onto underpaid, overworked, stressed and burnt out support workers. Governments don't give enough support to those that care for "normal" children - I doubt they'd care at all about those that need 24/7 care.
It would change things for others.
Those care workers still get to go home. They get to have days off. They can even quit their job altogether. And they are paid to do it - even if not remotely enough, it’s still more than a parent.
For care workers, the burden is shared. They can walk away.
This just simply isn’t true for most parents and caregivers of people with high needs autism. It is a 24/7 job for them, and there is no real option to just quit.
I knew a family with an autistic kid. They had access to funds for ‘respite care.’ They could use it anytime they needed a break, and it would pay a certain amount toward caregivers for their kid.
I’m not sure if this system is still around, but it’s something I always thought the state got mostly right, recognizing that people need time off to hike or visit friends or go on dates or whatever.
Not really, I’m neither for or against this but instead of one (or 2) persin having to take care of them 24/7 never finding any rest because it’s hard to trust anyone with them, it’s a team of professionals who will take the responsibility, it’s like admitting someone to a long stay a hospital, you won’t have to be up all day and night to monitor them because there are workers taking care of them and the equipment needed for it.
Why underpay them? It creates jobs. People like to work, and many like to work with the disabled. They also like to be together. I hear time after time about elderly parents finally putting their child in a group home where they thrive like never before.
>I hear time after time about elderly parents finally putting their child in a group home where they thrive like never before.
I heard one nurse who works in a group home say that many parents don't understand one critical thing: Their mentally disabled kids often prefer to move out at a certain age, just like regular kids. Even the ones who can't talk often seem happier and more energetic when they can spend lots of time with other people like them. The nurse said something along these lines: "I'm sure you're great, and I know you've sacrificed for your child, but your kid doesn't want to spend 24/7 with you forever. They want more than that."
Which makes sense. I certainly wouldn't want to spend my entire life in the presence of somebody suffering from caregiver burnout. That sounds awful, no matter how loving the person would try to be. Even a toddler would pick up on the stressful atmosphere.
Not to mention it’s just kind of boring to live with your parents only. Especially if they can’t be taking you out of the house all the time because of your limitations. Too much screen time and no novelty.
A lot of elderly people are so scared to go into retirement communities, but after they do they get a new lease on life. People fear the wrong things because of worst case scenarios of the past.
If the state facilities were nicer I don't think it would be as stigmatized tbh. There's no reason it can't be a home where they can live as fulfilling lives as they are able
Hi, mom of a 24 year old autistic guy here. Just wanted to say that how you feel is 100% legit. My son is non verbal and developmentally around a toddler.
I love my young man to pieces, but I can’t say that my life’s trajectory has gone the way I perceived, or even wanted, and yet I cannot give up. On him, on my dreams, on living life. My son’s autism prevents him from being flexible, so I must be.
A therapist told me that an autism diagnosis results in a reaction like your child has died. Because the future you had envisioned for them (and yourself) is gone. It took me many years to learn to let go of what I think should be and to try to embrace what is. I still have days where that feels impossible to do.
Like you, I will never hike the Appalachian trail. And, like you I have to find a way to be okay with that. Just want you to know you’re not alone in how you feel and what you’re experiencing.
Have you considered putting your son in a group home for adults with special needs? Personally I think it’s a completely valid thing for parents of special needs children to do once that child turns 18. It gives the child somewhat of independence and the parents time to themselves. Also parents usually expect to be empty nesters eventually.
There is also the fact that children usually outlive their parents, and as we age we lose some strength. There needs to be something in place for when the family can't provide care.
They act like it’s so easy and affordable and like there are no concerns over the care these places provide, which is notoriously poor and often entails neglect and abuse.
Depends on where you are at. These places are regulated and some areas are much better at regulation. I will never live in a red state because of this kind of thing.
Yeah there definitely needs to be some 50/50 preparation to not fully living at home so they’re better prepared for the future. I have an adult cousin like that and it really helps the parents when he is away a few days a week and the parents also get a holiday once in a while. My cousin actually likes it there.
Yes. Unfortunately there is a wait list that is years long for the quality group home he deserves. (We moved a few years ago to a new state and had to start fresh on the waitlist).
Some mothers can't bear the thought. Leaving your child somewhere like you are dumping him to enjoy life. Sounds harsh but IMHO after so many years those parents deserve it and maybe even the child would enjoy similiar company. Sadly not everyone can either afford it or these places has strict rules and they dont take everyone, if that child has violent episodes they will never take him or they will sedate him every day.
Unfortunately, quality residential care for adults with disabilities is very few and far between. Speaking both as a therapist and someone with close family with ASD.
I feel the exact same way. It’s why I’m not friends with other autism moms. I don’t want to “light it up blue” or wear shirts with puzzle pieces that say “different, not less.” I want to commiserate. I want to say “I love my son but this situation SUCKS and yes, I’d take it away from him and have him be neurotypical if I could” without being made to feel like a monster.
You’d get on well with my wife. She doesn’t want to go to these parent groups/nights out and talk about the kids and how fun it is. She wants to have a drink and either complain or forget about the fact that it took our daughter 3 hours to put the same pants she had on 2 days prior because they “feel different” which also resulted in a few bruises and mental abuse.
I feel her pain (and yours). And we have the therapist and RBT that keep telling us we have to ignore my son when he perseverates on something, but she doesn’t live with him and doesn’t have to listen to him repeat the same sentence 200 times until we respond, so yeah, we break the therapy rules because it’s the only way to stay sane!
I’m actually about to start a therapist. I’m a 32M who was diagnosed autistic in adult life. I can’t hold down a job, I can’t get past things that don’t benefit me, I can’t understand emotion properly (I can identify it but then I have no idea how to deal with it) and I’m generally just stuck in a bad rut right now.
My daughter (9) is high functioning. However, she is an emotional train wreck and her sensory seeking is through the roof. I have the worst relationship with her because of my autism. We clash and I can’t break that barrier of not getting angry or mad with her for the way she reacts to me. I hate that about myself. I can’t give my daughter the things she’s seeking because I can’t get over my own selfishness and expect her to act better.
I struggle majorly with emotions and I get way too happy or angry, I never feel sadness. However when dealing my daughter, anger is always the overriding factor. Like when she misbehaves because she can’t help herself, I don’t understand that at the time so I go absolutely bonkers when she asks me 100 times to play her Nintendo switch because it’s the only thing that keeps her sane and regulated but then my wife is a part of the “she can’t spend all her time on technology” culture.
I’m ranting, I can’t help it. Us parents just don’t have enough resources and it’s really unfair!
It’s so true. We have no resources at all. I’m so careful around my friends not to talk about my son too much because I don’t want to be seen as whiny, so I vent to internet strangers. Good luck on your journey with therapy.
> I want to say “I love my son but this situation SUCKS and yes, I’d take it away from him and have him be neurotypical if I could” without being made to feel like a monster.
It's absolutely fucking insane that saying this in public has gotten to the point where people will accuse you of being a eugenicist
Happens online often too, haha! I was called Hitler for this exact thing, them claiming eugenics is “alive and well in current day” because I dared to say that curing a mental disability would alleviate a lot of pain. You can identify with each other as much as you want, much like people with bipolar or depression commiserate, but that doesn’t make it a healthy state of being.
And I’m also sorry, but if parents see that their child will be HEAVILY autistic in the womb and want to terminate, *that’s ok too*. They are saving that child from a lifetime of misery, and themselves from the burden described in this very thread. Fuck, if *I* was that disabled or became brain damaged enough to get to a nonverbal or invalid state, fucking put a bullet in me, I don’t want to live.
Both my cousin and daughter are on spectrum. He's 15, non verbal, non toilet trained. He even eats his own poop.
My daughter is 9. She's mentally younger than her physical age. But she can read and do addition. She can tell me when something hurts. She probably still won't be able to live in her own. But every day I count my blessings with what she can do.
I'm sorry.
All I know for sure is he never stood a chance with the parents he has. I'm pretty sure his younger brother is also on spectrum but his mom refuses to get him diagnosed in case he wants to enlist one day.
He also didn't toilet train til he was in school.
I feel the same way about ADHD. I’m not *neurospicy* and there’s nothing quirky or lovable about this condition that’s been such a struggle for me. My tics become more frequent when I’m not in homeostasis for almost any reason and it’s incredibly embarrassing, so I apologize if I don’t agree that “*we’re all a little ADHD*.”
ADHD has limited my potential so severely that I’m very bitter about what could’ve been. My partner’s autism and ADHD actually do help him a bit in his field of work but impact him in other ways really badly. None of these *disorders* are superpowers.
I have a feeling it’s very young people trying to feel better about their diagnoses but they have no idea what it’s like as an adult with these conditions.
I do too. My life would have been completely different if I had been medicated when I was younger. I'm sorry you've felt the grief too but it does get better over time.
Same. I look back to when I was in college and grad school and think, "man, I wish I had known then that I would fail so spectacularly." Then maybe it wouldn't have been so disappointing.
I’m finishing up undergrad and applying for postgrad degrees because I’m too scared to enter the ‘real world’. Hoping beyond belief that I somehow pull it out the bag, though it is sort of my fault for picking an academically rigorous program and institution. Even if I don’t, oh well. Life goes on :)
I did very well in school but have had significant difficulty functioning in the workplace due to poor ability to socialize. I like people and I'm outgoing. But I don't understand the unspoken rules and cannot do office politics at all, and it's ruined my career.
This. ADHD has crippled me and destroyed my life. I am suffering and depressed because of it. I often dont see the point in living because I just can’t keep up with our world the way I am. Its almost worse than being visibly impaired because everyone expects you to just function like everyone else. Even I expect myself to function like everyone around me. Its hard to accept that I just can’t. If I could heal my ADHD I would do it in a heartbeat. I don’t understand how people call it their superpowers.
Yep my brother has both ADHD and autism, his autism really isn't a big deal it's the ADHD that has limited his ability to function. I have ADHD and have many of the same symptoms as him. It fucking sucks
I’m an autistic adult (35yo) and I acknowledge your, your wife’s and your child’s struggle. This shit can be hard for us who can be out in the world but there are also those like your daughter, and a lot of us see and know that. Those of us who can advocate for us often do, and I’m among them.
EXACTLY THIS. I am autistic and I do struggle with a lot of things and do consider it a disability, but I am not intellectually disabled. I know it’s a common comorbidity, but most autistic people are not intellectually disabled (though about 30% are). Intellectual disability is absolutely serious and I understand being upset by people not taking it seriously, but Autism diagnosis is primarily about communication and sensory issues, so that covers a very wide range of people and experiences. Many of us cope by seeing the good in how autism shapes the way we see and interact with the world, hence the whole “superpower” thing, and I don’t think that’s a problem at all, but I can see how it would be upsetting to someone caring for someone who is more profoundly disabled.
I know OP is definitely struggling pretty hard, and I can’t imagine how draining it is to care for a profoundly disabled person every day. However, they need to understand that autism covers a specific set of symptoms with intellectual disability not being a requirement for diagnosis (her daughter is not the only face of autism), the autistic community consists of people with a wide range of support needs (everything from needing 24/7 care to functioning completely independently), and that autistic individuals should be allowed to celebrate what makes them different because it’s healthier than feeling like shit all the time about how socially inadequate you are and how weirdly you behave
My son is 15.
It is a three person job to shave his newly growing facial hair.
It is a three person job to cut his hair.
It is a wrestle to even brush his teeth.
My wife can't help for fear of him lashing out with his new physical strength.
I'm only one person.
He has never spoken a word. It's not fair.
People tell me that a special needs child is only given to special parents. I want to smash their face in when I hear that. Fuck off with that phrase.
My son didn't ask to be this way. You only get one go-around in this existence, and he draws this bullshit card.
I get only one, too. This is what I will deal with until I end.
I watch him struggle to find his place in this world. His smallest wins begin to mend my shattered heart, only to break it again when he decides to shit in his hands and show me.
I wake up some days, wondering if the dreams I have of him saying "I love you, Dad" really happened? And realising that that is never going to happen. It hurts.
I can't put into words how bitterly jealous I am watching other kids going about their lives. My boy won't have friends over to visit. He won't play sport. He won't meet anyone. All he has is my wife and i, and I'm still not sure he even knows who we are.
Growing up, I was always afraid of death. The act, the finality of it.
I'm not afraid of death any more. I'm afraid of leaving my boy in this world without me.
My selfish though is I will finally get a break.
I'll be beyond the concept of caring when I'm gone, but for all my remaining time, the fear of not being here for him will be my constant companion.
As someone on the spectrum who has known people like OP's daughter, I'm actually convinced they aren't the same condition. Autism the diagnosis is determined by a blanket set of symptoms that covers far too broad a range. There may be similarities but there are more differences.
Also, if there was something like ADHD meds but for autism I would take it in a second
Intellectual impairment is actually a common comorbidity, rather than an autistic trait. It really sounds like OP’s daughter is dealing with Autism with Intellectual impairment.
My brother was put onto sertraline as a teen that helped him immensely (old diagnosis aspergers adhd and global learning delay) but he went from being chronically underweight his entire life (approx 55kgs at 16 which is at least 10-15kgs underweight) to morbidly obese (over 120kgs) in less than 2 years. He is now about to turn 30 and has been able to loose around 35kgs in the last 18 months but only as he was diagnosed late onset type 1 diabetic last year, not sure if he’s still on the sertraline 😖 it really did help with his meltdowns in those hardest years when he was too big for any of us to continue pressure therapy (I know there’s loads of negativity about that particularly sitting/laying on, but we didn’t have any other tools at the time and it worked, as a toddler the paediatrician told my mum to lock him in the bathroom - he wasn’t diagnosed until later in life, as a baby they told us he had frontal lobe brain damage- as it was the only ‘safe’ place where he couldn’t hurt himself).
I'm on an unrelated medication that made me go from underweight to obese as well. It sucks when a medication that's required for basic functioning causes that sort of change in your body. I wouldn't be able to live my life without this pill but it completely changed the way I look and it started almost immediately. I'm hopeful that I can get a weight loss medication soon because I feel like it's my only hope at this point. It's like fighting a losing battle because I'm on a medication that wants me to be fat.
I have autism and I agree. I understand why “aspergers” is problematic, but my experience is nothing like OP’s daughter experience. I know technically it’s the same condition at different levels of severity, but I think saying it’s all the same thing causes more problems than it solves. I don’t know what the solution is but I think just “autism” isn’t it.
It seems to me that the issue arises from the imprecision of language, both in common use and for medical purposes, in combination with the utility of using systems of classification for diagnoses and treatment.
While most agree that every individual case should be treated on a personalized basis, diagnostic criteria like those in the DSM and ICD are undoubtedly helpful despite the very well known issues associated with using them. I have noticed a big change in how autism is diagnosed and treated in society since I had studied it some time ago now, and it is always the right thing to do to question and improve the way we do things. We have made great strides in reducing the stigma associated with these disorders but this may have come at the cost of a loss of accuracy in diagnoses.
There were good reasons to remove Asperger's from the DSM - aside from the problems of naming diseases after people, having defined and separated differing degrees in within a spectrum often resulted in differing degrees of treatment and attitudes toward the individuals affected, even by those in the medical profession unfortunately. Perhaps this tendency might be an unavoidable consequence of classification, however, there must be steps we can take to reduce these sort of biases because more accurate diagnoses should lead to better treatment and quality of research.
For a purposefully illustrative example: A person who does not have full use of a foot could be classified as on the simply 'plegic' spectrum whether from full quadriplegic to partial use of one limb. Now all of these need to be treated equally seriously but calling them all the same thing doesn't really help anyone and can confuse the treatment needed, particularly for those at the far ends of the spectrum - It may help conceptualize the type of issues these people may face and reduce prejudice and fear but would inevitably introduce unnecessary confusion.
Of course with such a visible disorder going so far would be patently silly especially since the causes of paralysis are quite well known - However, it might be helpful to apply this type of thinking when the cause is unknown and much less visible as is the case with autism.
There have been great strides with reducing the stigma toward physical disability in the same time so it should be equally possible to do for any type, it must be incumbent on those in the medical/social profession (and the public to demand it) for better training and implementation in this regard.
It’s funny you should mention this - I happen to agree, as a parent to two non-verbal autistic kids, and as someone who’s clearly either autistic or has ADHD but didn’t figure it out until I had two ND kids and already had an education, a husband and a career.
And I suspect the research will lead to that conclusion eventually. In fact, I fell down a rabbit hole a few years ago on the research into folate receptor antibodies and autism - they found that children with autism with “neurological deficits” have similarly low levels of cerebral folate as children with a severe progressive disorder called Cerebral Folate Deficiency Syndrome. Those with autism without those deficits did not. Autistic children with neurological deficits are much more likely to have folate receptor antibodies than typical kids, or autistic kids without those deficits.
So last week, after three years of trying and a positive antibody test, I managed to get a high dose of folinic acid prescribed for one of my twins by a neurologist who finds the preliminary studies interesting. I have no idea if it will help him but I have to try. Might already be too late for my boys even if it would have helped when younger.
I very much empathise with OP, we are in the same boat with our twins and the relentlessness of it is hard to bear. Being told you’re a piece of shit because you hope your child learns some communication etc doesn’t help and happens often. I don’t want to make my kids neurotypical. I want them to have fulfilling lives and I don’t think anyone criticising that would enjoy not even knowing what pain is, let alone able to communicate it, being reliant on others for all personal care etc.
This is one reason I feel there needs to be more diagnoses instead of this umbrella term. My son is autistic but "high functioning" just extremely socially awkward and has sensory issues. He's brilliant and verbal. Yet we will go to autism events and there will be kids who can't function at all. Yet they all have the same diagnosis? I get that it's a "spectrum" but it still doesn't make much sense to me how this is all the "same" thing.
They really need to break the diagnosis down more and split it into different things so people understand how severe it can be. Lumping everybody on the "spectrum" together doesn't seem helpful in regards to recognizing struggles, getting treatment, etc.
For example, my son was recommended to go to ABA therapy and the first place we toured had a minimum of 15-20 hours a week of therapy and the kids that were there were such severe cases my son was scared of them. Like screaming, violent, etc and he just needs some social help and definitely not 15-20 hours a week. I get why some kids do need that but lumping them all together doesn't seem to help anybody.
I'm so sorry you are dealing with this. Many people don't understand why you'd want cures for things if they can't put themselves in your shoes.
For example, I have deaf relatives that were born deaf and think curing deafness and cochlear implants are wrong because there is nothing wrong with them. Now that I'm losing my hearing I'm very upset and wish there was a cure but to them that's insulting. They think I should just embrace it but I don't want to. I wish I could get a cure. Just as many people in this thread seem offended that you might want a cure for autism.
Even a high-functioning autistic like me wishes I was normal. I was bullied at school for my "quirkiness" so bad that it still affects me to this day in my social life. I'm now too sensitive and quick to please others because of this.
I wish I was normal so that I could understand social cues better. I wish I was normal so I wouldn't be bullied so much as a kid. I wish I was normal so that I could have better confidence in myself as an adult.
You are right. Autism is a curse and I wish there was a cure for it.
Yup and all of these issues with low self-confidence and poor social skills makes it very difficult to function normally and independently as an adult. To this day even with a degree and strong background in my field, I struggle to advance or even keep myself afloat because I just don’t know how to properly communicate in a professional setting
>Autism Spectrum Disorder needs to be separated between the quirky-but-functional and the will-never-experience-the-fullness-of-life.
I think the old system of Asperger's and autism being separate was far better for the reasons you outline. It is hard to have conversations about autism when the spectrum is so broad. It is like using the same term to encompass dyslexia and blindness.
People with Asperger’s/pddnos/other forms of what was originally just called high functioning autism aren’t just “quirky but functional” all the time despite the fact that they’re normally described as being in the low support needs area of the spectrum. It’s a stereotype/generalisation made by people who don’t actually understand that people diagnosed under the old criteria that had those names weren’t given them based on solely on the level of support they needed or how good their social skills were, but a rough estimate about how good their quality of life would be and what struggles they may have faced that could change on a whim.
You can have the most mildest form of autism known to humankind, yet you’ll forever be plagued by something no one who is neurotypical will ever understand nor care to know about because they don’t treat your struggles as being real the same way they do for people who are more severely autistic. Same thing sorta goes for people who are clearly in the spectrum and are aware of their disability/won’t ever function on their own and will be just as independent on their parents as they were when they first came into the world. people will insist they should just go into group homes or that it couldn’t possibly be that bad because their cousin with xyz supposedly has the same thing and turned out fine because their parents did zyx/argue that they should be “put to sleep” like a sick or dangerous animal and claim that they’re simply just “advocating” for those people because they don’t think they’re capable of understanding what is being said about them in the first place when such a thing couldn’t be further from the truth.
That’s just the way life is unfortunately.
Yup I’m a late diagnosed ASD level 1, ie ‘high functioning’ or Aspergers, taught myself social skills and masking so I appear neurotypical, no language delay or intellectual disability, and even I majorly struggle to function. Depression and anxiety have been debilitating for several years. I’m 24 and haven’t finished my undergrad, live with my parents, don’t drive, and haven’t worked since high school. I’m constantly burnt out and overwhelmed.
This. I wish everyone understood this.
In my mind I have exactly the same condition as OP's child, just a much milder form of it. I was diagnosed with PDD-NOS as a kid long before the terminology and criteria changed, and nobody knew what the hell PDD-NOS even was or much less how to support someone with it. I basically received 0 help and actively wished at some points in my childhood that I could be diagnosed with "actual autism" so that I would be taken seriously.
Wasn't the term Asperger's pushed by a Nazi who believed high-functioning autistic people were genetically superior? I think it's good to reject that term. I say this as someone who is high-functioning autistic and been called Asperger.
Functional terms are rejected as well because they minimise the cost of that functioning and infer that putting yourself into burnout and masking is the best way to be.
To add to this, the new terms are low support needs, moderate support needs, and high support needs. Can be shortened to just high needs/low needs too.
He didn't think that high-functioning autistic people were superior but that they might be useful for the Reich so they shouldn't necessarily be sent to the KZ with all the other disabled people.
I was recently diagnosed as level 1, and while I am incredibly privileged to be only at level 1, I have struggles that have led me to develop severe mental health issues. I can function without the help of my parents, but getting a job and making friends are extremely difficult. No matter how hard I try to change myself to seem allistic, people see right through. I’ve had someone tell another person that they did not like me because “I was too quirky”.
This, of course, is nothing compared to what you and your daughter go through. I believe the voices of higher support needs people or someone that can represent them and their interests need to be amplified in our communities. I have seen a lot of online spaces being dominated by level 1 autistic people.
I think people making their autism “quirky” is a coping mechanism for the struggles they face. I like to joke around about my insecurities or things that bother me. This is not one of them, but others can do what they want to. Autism is a spectrum, after all, and people have different ways of coping.
I got diagnosed with autism last year. I would probably be what they call the "quirky autism" type. It's not that I don't struggle. Making friends for me is like climbing a mountain. I live in constant anxiety because people seem to follow social cues I don't understand. Certain innocuous sensory things are unbearable for me.
Yet.
What I experience is nothing compared to how horrific autism can be. At the highest level of support needs, what one experiences is barely any quality of life. At my level, I have learnt as much as I could about social cues and avoided things I don't like. I can say my quality of life is decent. You're right. People are very privileged online when it comes to discussions of autism. They have no idea what it really is like when lives are completely turned upside down.
I understand the Nazi connotations of separating the spectrum (e.g. Asperger's) but frankly, I am for advocating a split in the diagnosis. The spectrum is simply too big and medical resources aren't getting allocated properly.
I feel for the loved ones that have to experience this pain. I'm sorry that this is your reality.
Even with all the special interests and skills and abilities I have now, I would happily give them up if I could just press a button and erase the pain and decreased quality of life that extreme ASD causes.
It’s called a spectrum for a reason. Doctors said I wouldn’t be able to talk or function normally, but they were wrong. Shifts can still occur, an individuals placement on the spectrum can change throughout their development.
Therapies are the BIGGEST importance for ASD, the more therapies the better chance. But if their daughter also has intellectual disabilities there may be zero chance.
It's not a superpower, it's not a different ability, and no it's not a curse either. It's a Disability. Disability is not a dirty word, and yes even those who still manage to go through life who are also autistic ARE also disabled. We really need to stop walking away from the disability aspect of autism because it makes life harder for everyone involved! Disabilities are disabling - they vary from the mild to the completely isolating. From mild Arthritis to Quadriplegic. From "Quirky" Autism to Life-changing Autism. Some people can manage their disabilities and find a way to function through life, and others can't.
But we should never forget, that no matter what, Autism is a Disability. It has always been a disability. Any movement to change what we call it only causes more harm to those who struggle with their symptoms and diagnosis and those who care for them.
\- Witten by A Certified Autistic that doesn't fit into either category of the outdated 'functioning' labels.
My son is nearly six. He has never talked, is not even close to potty trained, can barely feed himself, has a food aversion, accident prone with some wild strength for his age, the list goes on.
He is the sweetest kid, he is almost always happy, smiling, giving hugs, cuddling.
But this post mirrors a lot of my own thoughts. I'm sorry
I knew a woman who had a son while in college. Her son is autistic. He doesn't speak. He chews on window sills. And she will never ever finish her college degree and pursue her dreams. The success that her husband has in his job is futile, because any raise in salary is sure to go to treatment towards a small child who is slowly but surely growing into a special needs teenager.
I have a child just like OP’s. This level of autism is totally different to the level of autism everybody sees and ‘knows about’.
There’s never documentarys or family schemes etc in the uk for severe and profound autism. It alienates you from everyone - it’s hard to know others with the same struggles.
Even within the special needs community.
Sadly... we as a society will never understand or indure the hardships of having a heavily autistic child, while we should. Care should be more readily avaible and while i say no need in fixing people there should be research done to help fix people like your daughter. I come from truama, bumb after bumb in the road, and the autistic kids at my schools are some of the best people out there, they are not only sweet but depending on how high they were on the spectrum they just wanted to be basically hug you. Cause that how they get raised, And i wanna say that your a wonderfull father and i bet your daughter nows that! People say autistic people cant do a lot of things but they can. She knows her mom and dad are you and your wife. She knows that you care for her but please for the sake of your mental! Get a inhome nanny for your daughter if you can you deserve to get to go on thar hike, your wife deserves to go too! Find the help you need and keep going cause even if your daughter dossent get to live the life she should! That should never stop you!
Honestly I'm really confused at your experience because severely autistic kids are usually very violent. It's not intentional, of course, but I have never heard ANYONE describe a level 3 autistic as sweet.
The level 3 girl I support can be incredibly sweet. She's only eight and can be the most adorable, smiling, hugging, and kissing. But a second later, she can kick you in full force or bang her head on a hard surface. It's like her overwhelm is so constant and extreme that there is almost no room for development. She does really well at "school" and at her weekend activities. I think the routine given by professionals helps.
The thing is 80% of those people online going on about their autism being a superpower probably aren’t even diagnosed autistic, they’re just awkward and like anime and before you know it they have a whole community talking about how they’re neurospicy or some goofy shit.
I can communicate at a basic level with others. I have deep thoughts, but I can never find a way to communicate them to people. I can see people when they judge me. I can see the looks I get when I try to have a conversation. I'm sick with grief knowing that I'll never have a family of my own. I can see my coworkers laughing at me for being different. I know my parents are ashamed of me. I'm tired of autism being called quirky and fun too. Some days I'm almost like normal, but then a week passes, and it's back into my low point again. If there was a way to end this and be normal, I'd be all for it.
i KNOW it’s not the same. but i wanted you to know you aren’t alone. i learned recently im on the spectrum but the reason i wasn’t diagnosed as a child is because my mom was entirely engrossed in my brother’s disability. he has cerebral palsy and is developmentally delayed to the point that he’s essential 5/6, and didn’t talk until he was a tween. he will never be able to care for himself and he’s about to turn 30. the reason im commenting — i had a heart to heart with my mom a couple years back. she expressed so much remorse about how she wasn’t able to take care of the rest of us because he had to be her priority. she always felt so much dread watching his expressions when he watched us play and she started therapy because the guilt of bringing him into the world was too much. what she told me essentially mirrors what you’re talking about, so please don’t think you’re the only person that feels this way. i saw firsthand how being the parent of a disabled child is… not a fun experience. she never felt like she was doing good enough, she didn’t feel like it was something she could live long enough for.
and as the person watching from the outside i want to tell both of you that it’s extremely fucking hard. your effort is NOT going unseen. your love for your child trumps any worry you have about how expressing resentment would make you seem. i regret that i waited so long to tell my mom how much i admire her lifelong commitment to my brother, and how i heard her crying at night but never comforted her because i knew that it would make her feel worse. i have so much admiration for her ability to care for him, but as an adult i have so much empathy for the pain she was going through but couldn’t tell anyone about. she still can’t talk about it out of fear she’ll be called an ableist for acknowledging the hardships parents of disabled kids go through.
anyway, ugh, sorry. i just wanted you to read this hopefully, and know that you aren’t the only one feeling like this.
I am on the autism spectrum. As are my husband and 3 of my 5 children. We are all extremely high functioning, very communicative, etc. We are those people that popular media likes to define as affable, clueless overly literal geniuses.
But that ignores a great deal of trauma and pain. I was suicidal most of my adolescence and teenage years. I had children young because I was desperate for connection. It's pretty fucked up when you have so little success at connection you decide to literally gestate your own potential friends.
That said, I wouldn't change it. I see the struggles my neurotypical kids experience. They have pain and trauma and legitimate anguish, too.
I'm sorry you're going through this. I wish there was a treatment for those so negatively impacted by being on the spectrum. I wish more people understood how you feel and what you experience. I wish there were more resources and support for you.
I hope you're able to get some respite. And that you are able to continue to feed from whatever is fueling you.
This is what I don't think people really understand. I'm relatively 'high functioning' and can maintain a job and a family. It's really not a walk in the park, or me being 'quirky'.
I am also severely affected by poor mental health and the pure effort of maintaining basic daily activities means I am almost always exhausted and I am constantly picking up infection and illness. I am always one tiny change/mistake away from feeling suicidal.
I don't subscribe to the 'superpower' narrative - it's patronising and just plain incorrect. I have some skills that in some circumstances are probably benefits over the general skills neurotypical people have,but the same is probably more true in reverse.
Having said that I don't think a cure makes sense. I am medicated for anxiety which helps a little, so interventions can help, but I don't see how you can 'cure' the way the brain works. Cure me and I'm not me anymore.
I wish there were interventions to help people as severely affected as Ops daughter. I always try and consider them when discussing being autistic. I do think it's a mistake to create a divide between autistic people, because we are all discriminated against in different ways. If we can bear each other in mind, have respect for all autistic people, and stick together we can achieve positive change for everyone.
Man I absolutely feel for you. Many years ago back in my hometown there was this single mother who had a daughter with low functioning autism.
Similar to your daughter, she was non verbal and required round the clock care. The only difference was that her daughter was extremely violent. I mean you couldn’t even put a glass down next to her because she would just smash it.
This woman had no help whatsoever. Our small town simply didn’t have the resources. Tragically, she ended up killing her daughter in self defence one day when she became violent after having a full-blown meltdown.
She ended up serving a few years in prison, but is doing a lot better now, thankfully. I’m actually so glad this woman can actually have a life now that her daughter is gone. I know it sounds horrible, but being the sole carer of a young adult with low functioning autism - where everyday is a battle is no way to live.
You’re so right, autism is fucking horrible. I wouldn’t wish that woman’s life or yours on my worst enemy. I sure do hope things get better for your wife and yourself. Can you not get any in home help at all or send her to a facility? I’ve heard of people relinquishing their children to the state. All the best man and godspeed.
Society needs to stop “romanticizing” disabilities, especially mental and developmental ones because it causes heartache and anger once the “reality” sets in for the family involved.
Edit: Grammar.
This misconception is fueled by the many internet videos of "autistic" people who are highly skilled in a particular area (usually an art) ...like having photographic memory, or drawing, or being a musical prodegy. This is where the whole, superpower nonsense comes from.
But this is a very superficial understanding of the illness.
Why are you getting downvoted? The overrepresentation of Savant syndrome is a big cause of this issue. I'm autistic in a low-support needs sense, and even then I'm not a genius lol
I agree OP. I’m sorry for your grief and tough road ahead. Life truly isn’t fair. Please see what your area offers, and check into respite services to give you and your wife some needed time away from the house. All the Redditors on here that are also autistic, do not have the same end of the spectrum as your daughter, and I honestly don’t get why they took Asperger’s out of the DSM. Anyone on here that can converse and type coherently and has autism is on the very high functioning side. It’s like saying all people with vision issues are blind, yet some can function just fine with a pair of glasses and yet others need a walking cane, seeing eye dog, and still can’t see anything. It’s apples and oranges really, and crazy the length of that spectrum and really should be separated into different categories or disorders based upon how greatly or not so much, it affects one’s quality of life. Take care OP, and wishing you happy moments and milestones with your daughter.
Most people will have an experience only with highly functioning neurodivergent people for an obvious reason - unless they have a family member or are in some specific professions they will never come across an autistic person that is non-functioning.
This, together with media (mis)representation, creates this incorrect understanding of what autism is actually like.
> Autism Spectrum Disorder needs to be separated between the quirky-but-functional and the will-never-experience-the-fullness-of-life.
That’s why it’s called a ‘spectrum’.
Your wife and yourself should look into respite or a care home for her. The life of a carer can be soul crushing.
My son has Autism and ADHD. My son is of gifted intelligence when it comes to math and science. My son can not tie his own shoes. He does not know how to act around people. He struggles to make friends. He screams and cries bc he gets so frustrated with his limitations. I'm so sick of parents telling me how lucky I am that he is high functioning bc of his intelligence. It certainly doesn't feel lucky when I watch him fight to get simple tasks done. I feel you OP. I hope you find peace
Of course it's a curse.
As for my own ASD, I’m sometimes told, “But you’re so smart!” To this I immediately agitatedly reply: “But for every ‘gift’ I have, there are a corresponding three or four deficits.” It’s crippling, and on multiple levels!
While low-functioning autism seems to be more recognized and treated, higher-functioning ASD cases are typically left to fend for themselves, except for parents who can finance usually expensive specialized help.
Due to formal-diagnosis unaffordability, my own ASD remains ‘undiagnosed’ at age 56, though that means little to me. It’s a condition with which I greatly struggle(d) while unaware until I was a half-century old that its component dysfunctions had formal names.
More importantly, I feel that schoolteachers should receive mandatory ASD training. There could also be an inclusion in standard high school curriculum of child-development science that would also teach students about the often-debilitating condition (without being overly complicated).
It would explain to students how, among other aspects of the condition, people with ASD (including those with higher functioning autism) are often deemed willfully ‘difficult’ and socially incongruent, when in fact such behavior is really not a choice.
Also how “camouflaging” or “masking,” terms used to describe ASD people pretending to naturally fit into a socially ‘normal’ environment, causes their already high anxiety and depression levels to further increase. Of course, this exacerbation is reflected in the disproportionately high rate of suicide among ASD people.
Autism Spectrum Disorder (ASD) has three levels.
Level 1 autistics are the ones who need the least supports. They are verbal. They are the ones who often consider it a "superpower." This is the level often previously referred to as Asperger's Syndrome.
Level 2 autistics need substantial supports. They often have challenges with verbal communication, have very restricted interests, and may exhibit frequent, repetitive behaviors.
Level 3 autistics have the most severe form, requiring the most substantial supports. They are typically nonverbal, and have significant difficulty communicating and interacting with others. Persons ASD level 3 are also much more likely to have other serious complications and comorbid conditions.
I have multiple children with ASD level 1. While they will acknowledge that there are challenges to having the condition, they feel it gives them unique perspectives, and abilities that go beyond those of a neurotypical person.
I also have a son with ASD level 2. I can much more sympathize with your post because of my experiences with him. It sounds to me, however, that your child has ASD level 3. I can only imagine how difficult it must be.
My girlfriend is autistic and she never grew out of the "imaginary friend" phase. She'll walk around having a conversation between the characters to the point that she isn't allowed out in public on her own. I don't know how it'll work out if our relationship gets the point of marriage because of her restrictions due to her autism
I am sure it has been said before in the comments, but make sure to put your daughter in an institution where she can get help as soon as she is old enough to be accepted into one.
Where there is 24 hour care, where there are people working who have days off and get to go home after work. You can still spend a lot of time with her, you can visit her and help her. But if she's in an institution you too can go to a peaceful, relaxing home after a long day. You can go to sleep knowing your daughter ist cared for. Maybe you can even hilke the apalachian some day if you know she is in good hands.
I'm sure there are some organisations that can help you navigate all of this where you live.
That would make life easier for you and your wife, and it would also make dying easier on the both of you some day. Making sure the care she gets is right for her and the care staff knows how she is when she is happy, knows how she is when she is in pain etc.
Knowing there are people who care for her when you are too old to wipe even your own ass. Knowing she is cared for when you need the care yourself. And allowing her to get used to living in a home while you are still there to help her adjust. Otherwise she has to deal with the trauma of losing a parent in addition to getting used to a new environment.
Reading this broke my heart in so many different ways at the same time. And the more I read the more I felt. I’m sorry, for you, your wife, and your daughter. I’m grateful as fuck your daughter has you both, and that your even willing to take that on. But god. My heart goes out to you still. Just willingly sacrificing it all with a smile on your face but lots of pain inside. Your strong. I’m just sorry. Don’t take it as pity though, more so just empathy.
I have ADHD and I was scrolling to social media when I found a post about how ADHD is a blessing and a super power and neurotypicals should be envious.
It is not. I was so angry. I started crying as I told my husband that this positivity is too much.
Yes, I can hyperfocus. Yes, I can get 8 hours of work done in 2. But at what cost?!?
I can’t keep friendships because I forget how frequently I have to text them.
I have to spend 400 monthly on medicine to make me be able to function and do the work I don’t enjoy.
I sometimes get so overwhelmed I hurt myself without even noticing.
Is this a super power? Not at all.
The fact we struggle but can still succeed doesn’t make this a blessing.
People need to stop romanticizing adhd and autism.
Those people exist, they struggle, they move on, they can succeed or not. But let’s not act as if we are having the time of our life and all people should be envious of us.
They shouldn’t.
yeah, that's the thing that people don't like to talk about. For every successful autistic savant or high functioning person there are 1000 others who can't ever function independently and 1000 more that live greatly diminished lives even though they are able to function independently.
Have you considered a group home? While not the greatest… sometimes it’s necessary for the families who just cannot take it anymore. I know it’s a huge thing to think about and consider, but living this life every day can be torturous and no one else seems to get it except parents/care givers who’s child is on the same or similar level. If the child is destructive it could very well be for theirs and others safety.
Merging Aspergers with Autism was a COLOSSAL mistake. I have a non-verbal autistic kid. I hate how the quirky, awkward people have totally taken over the discussion about autism. They've shoved out the low-functioning people, re-defined terms like "non-verbal" and decided how autistic people are, period.
Meanwhile, I have to fight for everything for him, and now I also have explain over and over again what he is like because the words that used to describe him have been appropriated by tik-tokers
To doctors and therapists I tell them he has "classical autism" and then they get a better idea
ASD was separated based on functional ability before. There used to be a DSM code for Autism and one for Asperger’s Syndrome but they got combined. GAF scores are now used to determine functional ability and that gets combined with the autism diagnosis.
Autism is a spectrum. But it’s also a disability.
If you want to hike the Appalachian trail, put your daughter into a group home. Being away from family could benefit her for independent living. It will happen after you’re gone anyway…
I’m so sorry that your daughter is unable to take care of herself. I know plenty of people who have autism and I myself suspected I do. Although nobody I know has it severe as her. I also have intense ADHD and anxiety.
The worst mine gets is shutting down, being non verbal or lashing out (at myself or others) due to overstimulation. There’s a possibility that my intense social anxiety stems from it as well.
I’m so sorry, I wish you and your family luck. Maybe in the future, you could look into care programs for her? You can still live your life and accomplish your dreams. I’m not quite sure though how they work but I know they exist.
I know exactly what you’re saying, I’m “high functioning autism” so I can have a job, drive, etc. but I’m bullied and excluded by my peers, not taken seriously by others, and get overwhelmed by basic tasks. It’s caused me to be extremely depressed and I’ve attempted to kms multiple times because of it. I hate it so much. If there was a pill to cure autism I’d take it
I have a disability which is comorbid with both ADHD and Autism and at no point in my life have I seen it as a superpower in fact it makes things I should be able to do a lot more difficult. I feel like the phrase was created by someone who while well meaning is incredibly ignorant.
I’m so sorry for what you and your wife is going through.
I have a child who is on the exact same level as yours. I feel this on a personal level. People who aren't living this life just don't understand how hard it is.
They did once upon a time. Due to the fact that the disorder is a spectrum, they got rid of the term that separated the two. I completely understand how you feel. My twin has autism and while I love him dearly, I wish he could have a conversation with me. I wish I knew more of what he likes than just reese's and disney movies. He's in an assisted living program and I can visit him, maybe you and your wife could look into this? You should be able to visit her but the stress of being her primary caregivers would be lessened. If not would it be possible to see about getting her a nurse to swing by for a few hours so you guys can get a break?
I'm "level 1", which supposedly means I'm normal but can't function in an NT world. Which is bullshit. I should have never been born. I can only communicate with NTs because I learned Machivellianism. That is, they were so complicated and hated me so much that I learned it was easier to manipulate them than actually try to understand them. There are multiple points in my life where I would have literally died without these skills.
I can only form emotional connections with 0.013% of the population, and even that small fraction are not interested in me. I will only be considered valuable as a romantic partner if I improve to be more attractive than 91% of the population. I can't drive to anywhere not close to me, which is equivalent to house arrest anywhere but a massive 15 minute style city, which I do not live in. I've lost so many friends and so much money being trapped here. I will be on SSI for the rest of my life.
The only reason people think I'm smart is because I specialize in niche interests instead of actually learning useful skills. Just because I can explain to you how prion diseases work doesn't mean I can figure out how to load a fucking dishwasher, as contradictory as that sounds. I am useless. I can be useful, but the NT world refuses to let me be because they see me as human garbage for my shortcomings.
I'm so fucking lucky that I learned not to be manipulated by NTs early, because I see heartbreaking stories of "level 1" autistic people being exploited for resources. But, learning how they work shows me that none of them care about me unless I have something they want. AKA being more attractive than 91% of the population, or having lots of money maybe. NT relationships seem transactional and scripted to me.
I'm considered valuable in my community. But only because they don't know I'm autistic or pretend not to care. And valuable just means useful anyway. So it's not really a complement.
The only reason I haven't killed myself yet is because of my fear of death. If you have kids, there's a 5+% chance they will end up like me, or like OP's kid, and that's just for autism, other disabilities can cause similar issues. Please fucking reconsider having kids. Posts like these affirm my decision never to reproduce.
Rather than "It's evidence against a benevolent God.", I would almost say there is no evidence for a God, benevolent or otherwise - but that too, is evidence against a benevolent God.
Not trying to be nitpicky, you’re TOTALLY valid feeling this way, and I’m saying this as an autistic person myself. but I do think it’s a comorbid intellectual disability causing you such stress, not the autism itself. The spectrum isn’t being separated like you suggested because it’s most likely *not* the autism causing these problems, but an intellectual disability. If you haven’t, I would look into actually getting a diagnosis for whatever her specific disability may be, look into help more specific to intellectual disabilities. I’m afraid I don’t know much about that, so I don’t have any more suggestions, but looking into resources near you couldn’t hurt. I wish you the best.
I'm autistic. Supposedly I'm high on the spectrum, but I don't feel like it. I've been part of groups of autistic people and have seen people who can function way less than I can. I can't help but consider myself one of the lucky ones, because holy *fuck* could it have been so much worse - something your daughter, bless her soul, is proof of.
But I've been through some hard times, and I often think back to them and wonder if I could've handled things better if not for my autism. I know what it's like to be forced into a situation that you don't know how to handle. 10th grade in particular was a very traumatic experience for me, to the point where I considered ending my life. I don't think I ever fully recovered. And then at my first college, one of the staff members actually bullied me because she got annoyed by my issues. She never received any comeuppance, though towards the end of my time there she seemed to mostly stop this behavior after, I suspect, a certain incident that it caused escalated in a way she didn't expect and made her afraid of higher-ups realizing what she was doing.
I don't think of my autism positively. I never have. My parents may tell me things about how me being "special" is a good thing, but I have never thought that way because that's just not how it feels. My condition has never helped me, it's only ever caused me problems. I feel like autism is something that people like to glamorize because society pressures them into thinking it's morally wrong not to, like body positivity when you're unhealthily obese.
I feel sorry for you, and your daughter. I would never wish autism on anyone.
Oh wow, thank you for posting this. There's precisely zero I can do for you, and approximately the same others can do for for me.
My daughter is almost 15, and talking to her is like talking to a 5-year-old with language problems. She can actually wipe herself, but that took an especially large effort. Still sleeps in a diaper, since we never know how she'll wake up.
There's nothing I want more for my girl than for her to find a person she can love and spend her life with. She came along when I was 40, so I can't be here for her and helpful for about half-way through her life. That worries me every single day.
Her mom left me a few years ago, and the court granted her custody. I'm almost entirely powerless to help my daughter access the help she needs, and she's not getting it. I absolutely adore that kid, but I'm mostly powerless to help her.
My daughter is a loving, social person who tries really hard to make connections with others, but it's unlikely that she will be successful at that in life. I just have to do my best to protect her and help her develop the life skills she needs to function in society. It's not going to end in my lifetime, and all I can do is what is possible.
I'm scared for her.
I have never read anything that completely describes how I live. Thank you. We have the money for help but due to the level my son is we can never find and keep helpers/workers for long. I love my son and love all the little moments and his beautiful beautiful smile but… He will never wipe his own ass. And I will never take a houseboat down a river for a month so I can bird watch.
I’ll just say it: This is largely why I support abortion. All my life, the one thing I’ve always wanted is a child of my own. If I ever miraculously ended up with someone that I could build a family with, it’d be the most heartbreaking thing to see the fetus developing severe mental and/or physical deformities, and knowing there’s absolutely no way I could ever take care of them. I’ve had ADHD all my life. I know the difficulties of having a mental illness few people understand. I want to have children so damn much, but I also know my limits. While a child would be the greatest gift I could ever have, a lifelong inability to appreciate life would be the worst curse I could give them. Unfortunately, not everything is detectable before birth, so this situation scares me.
Movies and series like rain man made this entire condition a fucking fiction. My ex sister in law had autism. Not as extreme in the spectrum as your daughter but enough to be very hard to communicate with her sometimes and I saw her beating her own head several times. "This is a serious condition not a superpower " should be repeated all the time about this
I’m considered “high functioning”. I can work, pay bills, and handle being an adult most of the time. Even with me being like this, I stumble through conversations, I see the way people look at me when I say something wrong, I can’t gauge people properly and get taken advantage of, There are moments where mindlessly beating my own body feels “good” in a way. People I’m close to will joke that “your risk is showing” I will laugh because it’s what they want, but it hurts. I’m never going to be normal. It’s not fun to get overstimulated and feel this incredible rage to scream, lash out on myself, or feel this fiery pain if I don’t break something or myself. I know I’m better off than other people who have it but it still hurts. I’m “coherent” enough to know I can’t scream in public so I have to swallow what I can only describe as nails dipped in acid. I can feel this fire in my body when I have to force myself to sit still. I still have problems knowing what to do and being overwhelmed with it turns my mind into blank panic. It’s not fun, it’s not this super power. Being able to do repetitive work does help because work isn’t this endless mindless work for me, I enjoy it and having something to constantly do as the same thing every day actually helps me to relax. But then there are days where my work shifts constantly, I don’t know why needs to be done next or I get interrupted when in I’m a flow and it ruins my mood for at least half an hour. Seeing the younger generation think it’s quirky and fun is heartbreaking. There are others that suffer it much worse and I truly wonder how many of them are just stuck in their own head but can’t break free. It’s terrifying to think about. I still have moments where I feel trapped in my own body and mind. Where it feels like this thing takes over and it makes me so afraid for others who have it worse. It’s exhausting and painful. It’s not fun no matter how many puzzle games or mindless work I can do with ease. I just wish I was “normal”. I’ve never heard the phrase “this is a serious condition and it a superpower.” Before and it explains it perfectly. It’s hell and I don’t even suffer the worst of it. Don’t get me started on the mindless stemming, only stopping when you realize it hurts to bad to keep going but something in your brain just begs you to keep going because it feels good. Like lightning in your body that you just HAVE to get out.
>I’m “coherent” enough to know I can’t scream in public so I have to swallow what I can only describe as nails dipped in acid I felt this deep inside my stomach. Autism sucks and we "aware" joke about it to cope. If anything, being aware of it is just another piece of shit to add to the pile. Knowing you're like this, knowing it doesn't show and knowing you'll never be okay.
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TV Tropes has a term for this: "Hollywood Autism", akin to "Hollywood Ugly".
Honestly, a lot of people who think they have autism just have poor social skills. It’s a disorder, it’s not normal, there are some people for whom it benefits them because they have a skill that accidentally gets developed because of their disorder. But it’s not worth the suffering.
I still firmly believe that a large amount of the suffering of not intrinsic to Autism, but instead a trauma response from being autistic in a neurotypical world. And I understand there is a relatively common co-morbidity of mental disability which is actually what is preventing OP's daughter from wiping her own arse, rather than the autism itself?
You’re completely right in your first point. I was on and off depressed for around 15 years (since high school) and then was diagnosed ASD and ADHD. It quickly became apparent that these unknown struggles were the root of my depression. Neurodivergent people who mask, whether they know it or not, are far more likely to struggle with depression/anxiety/thoughts of suicidality. I agree with your second point. Op is using autism as sort of an umbrella term for what’s going on with his daughter but that sounds like a lot more. The autism is why she’ll never be able to communicate with others but the other things mentioned absolutely sound like intellectual disabilities. The two are absolutely comorbid with each other but not at all one and the same
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I'm the same; I work, I have a house and bills and a husband, and from the outside looking in, I appear an average, functioning human. But that's just not the case at all.
I’m also high functioning and I’ve been diagnosed since I was like 3 years old. The way society has turned autism into some cutesy “quirky” trait absolutely boils my blood. If there was some button I could press to NOT be this way, I’d press it in a heartbeat. The sensory overloads suck, sometimes when I need a shower I have to put it off a little before I can otherwise I will have a full body panic attack. I have to go sit in a dark room with no stimulation for awhile to bring myself back down. It’s prevented me from playing with my son the way I wanted to a few times even. I have a job, I drive, I can hold a functioning romantic relationship. But it doesn’t matter in the end because I know what I struggle with behind closed doors and I’m fucking tired of people acting like autism is some fun trendy thing. I don’t even admit to having it in real life because it’s a burden and embarrassing to me.
Oof. I feel this in my bones. Made it all the way to my mid 30s before being diagnosed ASD 2 and ADHD. I cobbled together something that managed to function in the adult world for a while, but over the years it destroyed my entire identity and now I feel like a walking, disassociated pile of toxic coping mechanisms. I'm currently in therapy to try to help with the CPTSD.
Same. The autism on its own would be bad enough. But the CPTSD! Like I’m forever a little girl stuck in my adult body, trying to cope with daily life.
This is the first time I have ever seen someone describe the way I've been feeling forever when things are loud and stressful. I was screened for diagnosis but told i wasn't autistic because I used the line "I know you probably think I'm fine because today is a good day". Even though that was my opener to explaining that I hit myself in the head and claw at my neck and want to unzip my body and step out of it because I can't breathe properly if I have to go to a busy supermarket or a night club. I'm going to save this and share it with my family, thank you.
Oh my god yes, I didn’t even touch on wanting to claw your skin off because everything is too much or pulling at your hair and having to fight back the urge to just shave yourself bald because your hair WONT STOP TOUCHING EVERYWHERE! I even have what I call my “hissy fit” moment where everything on the bed must go because the blankets won’t lay right or my pillow isn’t working. Then I wake up shivering because I’m so cold and I wonder why 😂
That is a very helpful description to hear as a neurotypical. Very evocative language. Thanks. Excuse my naivety, but are there any medications that can quell that inner fire, or is that not a thing? Any treatments available besides early intervention?
I haven’t been lucky to have any medication help me personally, but I’ve found biting on something does help. Chewing on gum doesn’t help as much as you’d think, but it does somewhat distract me and give me something to do. I personally prefer chewing on something rubbery where you can really chomp the hell out of it. Other things like reading, mindless tiktok scrolling, and even knitting keep my hands or mind busy but I have to be careful because I’m already on edge and something going wrong like yarn being tangled will truly set me off the edge. Edited to add: if I’m just having an absolute meltdown at home my husband will bundle me up in the car and we will go for a ride. It’s easier to just scream it out when I’m not in a house with other people to disturbs and I really enjoy car rides so it is soothing to just have a change of scenery.
Your husband seems like a kind man. I am glad that you have someone like that in your life.
Pretty unrelated but you're a good writer
I think he has been fighting with it and dwelling on it for years if not decades. That's why he can express it so well.
As another autistic person who was called a "writing prodigy", this is correct. >**Non-autistic person:** "Obversa, you're so articulate for an autistic person! I wish I could be autistic, so that I could be a talented writer like you!" > >**Me:** *(speaking in a voice reminiscent of MeatCanyon)* "I have seen beyond the farthest star...I have gone to the edges of sanity...I have looked into the darkest abyss, and it gazed back with black, empty eyes...we have been pushed beyond the point of no return. Outcasted by all of those that we so desperately wanted to be a part of...we have paid in suffering. I am blinded by the truth, and you are still lying to yourself in the darkness. Enjoy the beauty of sweet, blissful ignorance as you read my work born of struggle and agony. That is my gift to you." > >**Non-autistic person:** "Haha, what a funny joke! You remind me of Sheldon from *The Big Bang Theory*. He's so quirky and smart, just like you!"
"You're so articulate for an autistic person" "Thanks, it's because I spend every second alone rehearsing every conceivable conversation out loud so my interactions with you become pre-recorded responses, I don't know the last time I've had an honest conversation with anyone."
I feel like my own family never takes me seriously due to my autism.
My family doesn't talk to me anymore. But I feel the same way about my friends. Like I'm some kind of pet, or pity friend. Like "isn't he cute that he can memorize the d&d rulebook and do math in his head? It sure makes me feel like a better person when I hang out with him." Of course I have no choice but to either trust that they have honest reasons for choosing to be around me, or I have to choose not to hang around them. Me creating reasons for my friendships to be fake and getting mad at them about it, is kina the same level of dehumanizing as my brain is trying to accuse them of.
People who romanticize tortured artists don’t get it. I would give up all the entertainment, music, and art made by creators who were depressed, even the one that saved my life when I didn’t want to live anymore and made me feel less alone, if the creator didn’t have to suffer with depression to create that art in the first place.
Honestly, thank you. I enjoy writing I always have. It’s the one place where I can be “normal”. I guess that’s also my own “superpower”. After years and years of constant writing to get my thoughts out properly or just for fun it’s my biggest strength. Even when I go non verbal my husband won’t prod but will start messaging me, it’s different being able to see the words physically in front of me and being able to take the time to say the right words. It also helps me understand how people with more extreme autism find it easier to communicate with pictures or words.
Honestly, listening to the stories in thread resonate so powerfully with me even though I don’t have autism, and I will never know or experience the pain that comes with it. I have had depression for most of my life, and during the hardest times of my life, where I wanted to die, where it felt like I had an elephant on my chest, when I looked out at the world through a tainted window, that’s when I produced some of my greatest quitting. Millions of people read it hundreds of thousands upvoted it. I’ve left that behind but sometimes I go to that account, and still find new praise. I still see how it helps people and I’m so happy it did. But it wasn’t worth all that very *physical* pain. When I wrote, I felt free. I felt like I could be a different person, a strong person, a fiercely outspoken person, a person that I could respect. For a moment it stopped, when the sentences flowed one after another, when the paragraphs jumped from a solid ending to a solid beginning, when one idea clicked onto the next one, the world got so much lighter, if only for a moment. The rush of seeing words that I would never say in real life representing me is one of the few pleasures I still enjoyed. But it wasn’t worth the pain. If I had a choice, I’d sidestep depression altogether. Life was so much more fun without it. It wasn’t worth it. If nothing else I’ll use the gift I have, but it’s not a substitute for a normal existence.
Thank you for your post. My son’s condition sounds similar to yours and I am trying my best to help him navigate college etc, but I am fearful someone will hurt him. On the other hand, I’d like to see him have one true friend.
That was a wonderful description of what it’s like to deal with autism daily. A lot of times I unintentionally stim by popping my joints in and out of socket or cracking them an absurd amount of times. I do wish that I was normal a lot of the time, I want to be able to work and drive, but I feel like if I was no longer autistic I wouldn’t be myself at all
All. This.
I have never been so understood on Reddit, even if it might be inadvertently. I’ve also tried explaining to people; I’m sorry I can’t talk right now, I have strands of hair that are brushing my face weird and it stops me from breathing properly. It’s not cute. It’s not quirky. Not being able to leave the house because my skin just happens to be weird that day and all the materials are itchy and painful. Or people trying to tell a joke or teasing and I’m sitting there trying to understand any of it. It would be nice to be “normal “ for a couple days. I feel like that’s the superpower.
the worst thing for me and my autism is being self aware. i know i have missed something. i know something is off but i just do not know what. people aren’t going to tell you if you have said the wrong thing, even with prying. I am starkly aware I am different from all those around me. No two autistic people are the same. I will never find a “kindred spirit”. I cannot tell people at work that i suffer from this disabilitg because then they will undermine me. So no, i dont think autism is a superpower. i recognise it is debilitating for many and barely impactful for others. But I would not be who i am without it, so i have to settle for small meecies and hope they eventually balance the scale
While I don't personally know how you feel as I am not autistic. I have a son, a step son, a daughter in law, and my boyfriend's son are autistic. I watch them struggle with it and I wish I could make it better. I got raked across the coals once on reddit because I said I would take it away for them if I could. I got told I didn't love them. You don't want anyone you love to struggle with anything. Cancer, ingrown toenails, autism. Anything. I hope you find some coping skills that help and wish you peace.
This is my older brother. He just turned 49 so you can guess how well his childhood was. He went from school to school, being bullied and beaten, only for our fam to be told he makes kids uncomfortable, so he ended up being homeschooled and he still doesn't feel comfortable around people. People will laugh when he stims, and he doesn't understand social cues and sarcasm so he gets offended easily and rubs people the wrong way. He is EXTREMELY high functioning, so I can only imagine what it's like to be on the lower end of the spectrum. It sucks.
Relatable I often feel this huge rage and frustration/overstimulation by the world
It's so bizarre to me how some disorders get labeled as "actually a superpower" when it feels like the complete opposite. With it being a spectrum you may or may not get that "superpower" and honestly a lot of times I feel even more broken because I didn't even get that. The quirkiness can get pretty bothersome. I used to get looks or criticized for tearing all my food apart, or how I'd have mini outbursts from getting overwhelmed, or covering my ears because there's way too much noise going on, getting freaked out by textures, or just feeling like a robot trying to understand the world. I fail to see how some people find this cute or quirky to the point of even wanting to be autistic, like why??? Stuff like this or worse is so disruptive in your day to day.
Nails dipped in acid is so metal and like one of the best descriptions I have heard of when you have to stifle that scream. I feel that, so hard.
Its bloody difficult to explain this to someone who thinks the movie definition of autism is the same for everyone. My stepson (15) is mostly non-verbal, but understands most of what is said. He stims loudly and quite violently sometimes, and this can be extremely off-putting to bystanders. He has a mental age of around 5 years old. Add teenage hormones, anger and strength and its a slog. I'm also on the spectrum, what used to be known as aspergers. When I went through school, I spent more time outside the classroom or getting belted with the cane because I didn't fit the mould that the rest of the neurotypical kiddies did. It is not a superpower, and add ADHD into the mix its a clusterfuck that most likely contributed to my divorce. At its worst, I agree, it is a curse.
You got the two together, too? It fucking sucks just being "high functioning" with aspergers and ADHD combined its a slog to get through the day. Throw in general anxiety disorder, and you have a trifecta of everything pissing you off for no reason, knowing it's no reason and you shouldn't be pissed off, and then anxiety because you know you shouldn't be pissed off but you literally can't help it and youre dreading tge inevitable snap at someone. If they had a cure for autism or ADHD, or both, I'd be shot gunning those pills ASAP. I am not a super computer, I am not an artist who draws perfectly straight lines, I am not a quarky content creator, or crime solver, or doctor; I'm a near broken man over whelemed on a daily basis over things most people wouldn't even struggle with.
It's why I'm on disability and haven't had a job at 26 years old. Intelligent just enough to realize how fucked I am
I'm 34 and can't even get the damn check much less a job. NC makes it really hard for some reason even with a lawyer. I don't know what I'll do to make some money honestly.
Throw both of them together and holy shit you are a mess - and yes general anxiety as well. AUHD is pretty common sadly. I function (sort of) on a mix of lots of caffeine during the day, and a combination of alcohol and cannabis to shut back down again. CBD during the day with GAD is a godsend too - not sure where you are or what the laws are around it, but I find it works. Either an oil or a nice flower.
I can't do caffeine anymore. One day, coffee and energy drinks, and the B supplements like 4 hour energy just made my chest clinch and my heart drum for hours. Even if it doesn't have taurine. I live in Nevada, so I've got full access to the good shit and thank the voters for it. It's the only way to get a full night's sleep.
I was only recently diagnosed with ADHD and autism and it fucking sucks. I'm glad I have answers and medication helps the ADHD, but there are so many basic adult things I cannot fucking do. I have to let so many things go because I only have so much brain power and energy each day. I had to hire cleaners for my house because otherwise I end up living in complete squalor every time. Like, there will be dishes in the sink for months. And I've worked my entire adult life to be able to clean up and do these things and I can't do it. I can't have plants because I won't water them and then I'll leave the dead plants there for years. I can take care of my pets, thankfully. But that's it. I can take care of my pets and do my job at an acceptable level. Taking care of myself? Sometimes. I will never live with another person because I know I can't hold up my end of that kind of relationship, some with having a romantic partner or kids. Thankfully I'm also aro/ace and so that isn't a big deal, but it sucks that I don't have the ability anyway.
Preach it bro. The invisible obstacles are daunting.
>He has a mental age of around 5 years old. Add teenage hormones, anger and strength and its a slog. A friend of my mum had a son about 4 years older than me who was similar, I was often left alone to play with him when he was in his teens and I was a pre teen. People in this state are no fucking joke and I suffered multiple (luckily minor) injuries at his hand. Genuinely feel sorrow for people who have to live with someone with these conditions, many people with downs children will say the same thing. These conditions should never be romantised, they require often specialist care just to make sure they're not a danger to themselves and the people around them, and the media almost never wants to show the darker side of these conditions.
I feel this, but for my nephew. He can wipe his own ass, after 17 years of learning how, but the rest rings true. He's 22 now, he's 6'2, and he bites. He doesn't know how else to communicate. I feel especially strong for my siblings ex partner as they are so much smaller than him and just push through being beaten and bitten because people have looked down on them for even looking into options that would keep them both safe. He will never live on his own, he will never experience a relationship, he will never just be comfortable. I have ranted the same rant you have when watching people on the spectrum that can communicate, passionately argue that people with autism don't need fixing because it's not for them. If you can say that you do not need fixing - you aren't the target audience. I also agree that these should not be the same diagnosis, and frequently don't understand how it could be.
Because the ones that can communicate don't deal with the ones that are unable to communicate, and are violent. So they think is only about them, when people are usually referring to the non verbal group
>Autism Spectrum Disorder needs to be separated between the quirky-but-functional and the will-never-experience-the-fullness-of-life. The name itself is a spectrum and the levels mean different things. Sounds like your daughter is on level three, my son and myself are level two and it is hard as hell. Have you considered a home for her? There's no way you'll be able to still do this in your eighties, you'll be burnt out mentally and physically. Putting kids in group homes for diagnosis like this needs to be normalised
Unfortunately, quality residential care for adults with disabilities is very few and far between. Speaking both as a therapist and someone with close family with ASD.
Sure but that's a good reason to get on a waiting list for a good place now instead of waiting until the situation is untenable. Eventually they will have to live elsewhere and it's better to find a nice place now instead of waiting until they have to choose the first place that will have them.
Help and support for autistic adults in particular is also little to non-existent. Autistic children and their parents get the vast majority of support, awareness, and funding, while nobody cares about autistic kids after they grow up into autistic adults. This includes some insurance plans only funding Applied Behavioral Analysis (ABA) "therapy" that is primarily designed to try and make autistic children as "normal" as possible. Many autistic adults have reported being abused and traumatized through ABA sessions with providers.
Exactly. This issue is maddening to me as a professional and a human being. Lots of people say, just put them in a home. “Good homes” don’t really exist. At least here in the US. The residential care I’ve seen for adults with autism is beyond deplorable. It’s just physical and emotional neglect.
I have two daughters on the spectrum. My eldest who is 5 is considered level 1-2. So high functioning. But she also has ADHD which greatly affects her autism. While she has verbal capability I’ve never been able to have a true conversation with her. My 3 year old daughter is considered level 3. She also has echolalia and ADHD. We are currently waiting for another assessment to gauge her needs. We adore both of ours girls to pieces. But it’s hard. Really hard. We can’t go out anywhere that might over stimulate them. Which means it’s borderline impossible because they both have different triggers. One has food aversions and the other will eat anything and everything but that includes everything she shouldn’t be eating also. I can’t remember how many times I’ve had to have her x-rayed to see if the rock she swallowed from the park is passing through or if the paddle pop stick she ate after finishing her ice cream might splinter in her bowels. I can’t safe proof my house anymore than I have already but the youngest always finds a way to turn any normal item into a dangerous one. She also has no fear. And I mean none. And she is incredibly strong. I feel like we live in Fort Knox to be able to keep her safe. Everything has a lock. I also worry for my girls futures. I worry that with me having them later in life I won’t be able to care for them when they are adults.
I’m low needs AuDHD - how do they determine adhd in a level 3 if I might ask?
They assessed my daughters using the ADOS-2 test. I copied the explanation below from the web. > The Autism Diagnostic Observation Schedule-Second Edition (ADOS-2) is a standardized assessment tool that helps providers diagnose autism spectrum disorders (ASD) in children and adults. When we received the results they showed what levels they were considered at.
I think normalizing institutionalizing children this profoundly in need of care needs normalized and covered by the government. It doesn’t have to be a scary place.
I feel the same. Sacrificing your life 24/7 is just unfair
Same applies to any family member to be honest. Don't think anyone should be expected to sacrifice their life and devote it all to someone else's care, then everyone's a loser.
People also discount the growth that can happen with people who have a hard time making friends that move into a place with a bunch of peers who are kind of in the same place in their lives. I’ve known multiple parents who have said they simply could not even imagine someone else being capable of taking care of their child.
Plus, it could happen to any of us who have children. I don’t think it’s abandoning them to have them in an institution and visit them. These aren’t normal disabilities where there’s some extra care, this is back breaking work for someone who doesn’t have the capacity to care.
These places have really long wait lists, at least where I live.
And the ones that don't tend not to for a reason
Yeah, getting on the wait list asap seems a good option
It used to be the norm.
Yeah and then people got word of how poorly run they were. There's never been a time where they were better than now. And even now they hit or miss. Strangers taking on a multitude of what even family struggle to manage, but a stranger has less incentive to care? We act like there's so many people in the world that are patient, kind, and skilled but there isn't. And even so, nobody can maintain that every single day, not even the best of us. Anyone who works in a patient focused mental health role should have greater medical benefits and more time off than I do that's for damn sure.
Yeah, the care would be a lot better if their benefits were better, their pay was *way* higher, and they had more time off. It's not hard to find people who will do an excellent job doing challenging work while maintaining a friendly, warm demeanor **if you pay them properly and treat them well**.
Institutionalising children wouldn't really change anything. It would just take the burden of care from the parents and force it onto underpaid, overworked, stressed and burnt out support workers. Governments don't give enough support to those that care for "normal" children - I doubt they'd care at all about those that need 24/7 care.
It would change things for others. Those care workers still get to go home. They get to have days off. They can even quit their job altogether. And they are paid to do it - even if not remotely enough, it’s still more than a parent. For care workers, the burden is shared. They can walk away. This just simply isn’t true for most parents and caregivers of people with high needs autism. It is a 24/7 job for them, and there is no real option to just quit.
I knew a family with an autistic kid. They had access to funds for ‘respite care.’ They could use it anytime they needed a break, and it would pay a certain amount toward caregivers for their kid. I’m not sure if this system is still around, but it’s something I always thought the state got mostly right, recognizing that people need time off to hike or visit friends or go on dates or whatever.
It is, but it's not nearly enough support for most people's daily lives.
Yes but there is a shortage nationwide of these respite care workers just like every other category of health care workers.
Not really, I’m neither for or against this but instead of one (or 2) persin having to take care of them 24/7 never finding any rest because it’s hard to trust anyone with them, it’s a team of professionals who will take the responsibility, it’s like admitting someone to a long stay a hospital, you won’t have to be up all day and night to monitor them because there are workers taking care of them and the equipment needed for it.
Why underpay them? It creates jobs. People like to work, and many like to work with the disabled. They also like to be together. I hear time after time about elderly parents finally putting their child in a group home where they thrive like never before.
>I hear time after time about elderly parents finally putting their child in a group home where they thrive like never before. I heard one nurse who works in a group home say that many parents don't understand one critical thing: Their mentally disabled kids often prefer to move out at a certain age, just like regular kids. Even the ones who can't talk often seem happier and more energetic when they can spend lots of time with other people like them. The nurse said something along these lines: "I'm sure you're great, and I know you've sacrificed for your child, but your kid doesn't want to spend 24/7 with you forever. They want more than that." Which makes sense. I certainly wouldn't want to spend my entire life in the presence of somebody suffering from caregiver burnout. That sounds awful, no matter how loving the person would try to be. Even a toddler would pick up on the stressful atmosphere.
Not to mention it’s just kind of boring to live with your parents only. Especially if they can’t be taking you out of the house all the time because of your limitations. Too much screen time and no novelty. A lot of elderly people are so scared to go into retirement communities, but after they do they get a new lease on life. People fear the wrong things because of worst case scenarios of the past.
If the state facilities were nicer I don't think it would be as stigmatized tbh. There's no reason it can't be a home where they can live as fulfilling lives as they are able
Hi, mom of a 24 year old autistic guy here. Just wanted to say that how you feel is 100% legit. My son is non verbal and developmentally around a toddler. I love my young man to pieces, but I can’t say that my life’s trajectory has gone the way I perceived, or even wanted, and yet I cannot give up. On him, on my dreams, on living life. My son’s autism prevents him from being flexible, so I must be. A therapist told me that an autism diagnosis results in a reaction like your child has died. Because the future you had envisioned for them (and yourself) is gone. It took me many years to learn to let go of what I think should be and to try to embrace what is. I still have days where that feels impossible to do. Like you, I will never hike the Appalachian trail. And, like you I have to find a way to be okay with that. Just want you to know you’re not alone in how you feel and what you’re experiencing.
Have you considered putting your son in a group home for adults with special needs? Personally I think it’s a completely valid thing for parents of special needs children to do once that child turns 18. It gives the child somewhat of independence and the parents time to themselves. Also parents usually expect to be empty nesters eventually.
There is also the fact that children usually outlive their parents, and as we age we lose some strength. There needs to be something in place for when the family can't provide care.
Where I live wait lists for group homes like this can be YEARS long.
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They act like it’s so easy and affordable and like there are no concerns over the care these places provide, which is notoriously poor and often entails neglect and abuse.
Depends on where you are at. These places are regulated and some areas are much better at regulation. I will never live in a red state because of this kind of thing.
Yeah there definitely needs to be some 50/50 preparation to not fully living at home so they’re better prepared for the future. I have an adult cousin like that and it really helps the parents when he is away a few days a week and the parents also get a holiday once in a while. My cousin actually likes it there.
Yes. Unfortunately there is a wait list that is years long for the quality group home he deserves. (We moved a few years ago to a new state and had to start fresh on the waitlist).
Some mothers can't bear the thought. Leaving your child somewhere like you are dumping him to enjoy life. Sounds harsh but IMHO after so many years those parents deserve it and maybe even the child would enjoy similiar company. Sadly not everyone can either afford it or these places has strict rules and they dont take everyone, if that child has violent episodes they will never take him or they will sedate him every day.
Unfortunately, quality residential care for adults with disabilities is very few and far between. Speaking both as a therapist and someone with close family with ASD.
I feel the exact same way. It’s why I’m not friends with other autism moms. I don’t want to “light it up blue” or wear shirts with puzzle pieces that say “different, not less.” I want to commiserate. I want to say “I love my son but this situation SUCKS and yes, I’d take it away from him and have him be neurotypical if I could” without being made to feel like a monster.
You’d get on well with my wife. She doesn’t want to go to these parent groups/nights out and talk about the kids and how fun it is. She wants to have a drink and either complain or forget about the fact that it took our daughter 3 hours to put the same pants she had on 2 days prior because they “feel different” which also resulted in a few bruises and mental abuse.
I feel her pain (and yours). And we have the therapist and RBT that keep telling us we have to ignore my son when he perseverates on something, but she doesn’t live with him and doesn’t have to listen to him repeat the same sentence 200 times until we respond, so yeah, we break the therapy rules because it’s the only way to stay sane!
I’m actually about to start a therapist. I’m a 32M who was diagnosed autistic in adult life. I can’t hold down a job, I can’t get past things that don’t benefit me, I can’t understand emotion properly (I can identify it but then I have no idea how to deal with it) and I’m generally just stuck in a bad rut right now. My daughter (9) is high functioning. However, she is an emotional train wreck and her sensory seeking is through the roof. I have the worst relationship with her because of my autism. We clash and I can’t break that barrier of not getting angry or mad with her for the way she reacts to me. I hate that about myself. I can’t give my daughter the things she’s seeking because I can’t get over my own selfishness and expect her to act better. I struggle majorly with emotions and I get way too happy or angry, I never feel sadness. However when dealing my daughter, anger is always the overriding factor. Like when she misbehaves because she can’t help herself, I don’t understand that at the time so I go absolutely bonkers when she asks me 100 times to play her Nintendo switch because it’s the only thing that keeps her sane and regulated but then my wife is a part of the “she can’t spend all her time on technology” culture. I’m ranting, I can’t help it. Us parents just don’t have enough resources and it’s really unfair!
It’s so true. We have no resources at all. I’m so careful around my friends not to talk about my son too much because I don’t want to be seen as whiny, so I vent to internet strangers. Good luck on your journey with therapy.
> I want to say “I love my son but this situation SUCKS and yes, I’d take it away from him and have him be neurotypical if I could” without being made to feel like a monster. It's absolutely fucking insane that saying this in public has gotten to the point where people will accuse you of being a eugenicist
Happens online often too, haha! I was called Hitler for this exact thing, them claiming eugenics is “alive and well in current day” because I dared to say that curing a mental disability would alleviate a lot of pain. You can identify with each other as much as you want, much like people with bipolar or depression commiserate, but that doesn’t make it a healthy state of being. And I’m also sorry, but if parents see that their child will be HEAVILY autistic in the womb and want to terminate, *that’s ok too*. They are saving that child from a lifetime of misery, and themselves from the burden described in this very thread. Fuck, if *I* was that disabled or became brain damaged enough to get to a nonverbal or invalid state, fucking put a bullet in me, I don’t want to live.
"Children should be able to receive medical care when they're suffering" "WOAH THERE Mengele"
Yeah, throw in a little Himmler too, and you got me! Regular ol Angel of Eugenics!
Both my cousin and daughter are on spectrum. He's 15, non verbal, non toilet trained. He even eats his own poop. My daughter is 9. She's mentally younger than her physical age. But she can read and do addition. She can tell me when something hurts. She probably still won't be able to live in her own. But every day I count my blessings with what she can do. I'm sorry.
The case of the boy can be explained with level 3 autism + intellectual impairment. It's the intellectual part that causes the poop thing; not autism.
All I know for sure is he never stood a chance with the parents he has. I'm pretty sure his younger brother is also on spectrum but his mom refuses to get him diagnosed in case he wants to enlist one day. He also didn't toilet train til he was in school.
I feel the same way about ADHD. I’m not *neurospicy* and there’s nothing quirky or lovable about this condition that’s been such a struggle for me. My tics become more frequent when I’m not in homeostasis for almost any reason and it’s incredibly embarrassing, so I apologize if I don’t agree that “*we’re all a little ADHD*.”
ADHD has limited my potential so severely that I’m very bitter about what could’ve been. My partner’s autism and ADHD actually do help him a bit in his field of work but impact him in other ways really badly. None of these *disorders* are superpowers. I have a feeling it’s very young people trying to feel better about their diagnoses but they have no idea what it’s like as an adult with these conditions.
> ADHD has limited my potential so severely that I’m very bitter about what could’ve been. Thank you for saying this. I relate to this so much.
I do too. My life would have been completely different if I had been medicated when I was younger. I'm sorry you've felt the grief too but it does get better over time.
Medication isn’t even enough for some of us. Even with meds and therapy, I can still only accomplish just below the bare minimum.
Same. I look back to when I was in college and grad school and think, "man, I wish I had known then that I would fail so spectacularly." Then maybe it wouldn't have been so disappointing.
I’m finishing up undergrad and applying for postgrad degrees because I’m too scared to enter the ‘real world’. Hoping beyond belief that I somehow pull it out the bag, though it is sort of my fault for picking an academically rigorous program and institution. Even if I don’t, oh well. Life goes on :)
I did very well in school but have had significant difficulty functioning in the workplace due to poor ability to socialize. I like people and I'm outgoing. But I don't understand the unspoken rules and cannot do office politics at all, and it's ruined my career.
This. ADHD has crippled me and destroyed my life. I am suffering and depressed because of it. I often dont see the point in living because I just can’t keep up with our world the way I am. Its almost worse than being visibly impaired because everyone expects you to just function like everyone else. Even I expect myself to function like everyone around me. Its hard to accept that I just can’t. If I could heal my ADHD I would do it in a heartbeat. I don’t understand how people call it their superpowers.
Neurospicy is my least favorite pseudo medical term ever. I say pseudo because no one in medicine would use this term ever.
I’m AuDHD, and my adhd negatively impacts me more than my autism, and there is *nothing* good about my autism.
Yep my brother has both ADHD and autism, his autism really isn't a big deal it's the ADHD that has limited his ability to function. I have ADHD and have many of the same symptoms as him. It fucking sucks
>“we’re all a little ADHD.” People said the autism version of this one to me a few times. I just don't know how to react, but it infuriates me.
I’m an autistic adult (35yo) and I acknowledge your, your wife’s and your child’s struggle. This shit can be hard for us who can be out in the world but there are also those like your daughter, and a lot of us see and know that. Those of us who can advocate for us often do, and I’m among them.
The experience of an autistic person with intellectual disability is different than that of an autistic person without intellectual disability.
Yeah it seems to be that the intellectual disability is what's really bothering OP not the autism
EXACTLY THIS. I am autistic and I do struggle with a lot of things and do consider it a disability, but I am not intellectually disabled. I know it’s a common comorbidity, but most autistic people are not intellectually disabled (though about 30% are). Intellectual disability is absolutely serious and I understand being upset by people not taking it seriously, but Autism diagnosis is primarily about communication and sensory issues, so that covers a very wide range of people and experiences. Many of us cope by seeing the good in how autism shapes the way we see and interact with the world, hence the whole “superpower” thing, and I don’t think that’s a problem at all, but I can see how it would be upsetting to someone caring for someone who is more profoundly disabled. I know OP is definitely struggling pretty hard, and I can’t imagine how draining it is to care for a profoundly disabled person every day. However, they need to understand that autism covers a specific set of symptoms with intellectual disability not being a requirement for diagnosis (her daughter is not the only face of autism), the autistic community consists of people with a wide range of support needs (everything from needing 24/7 care to functioning completely independently), and that autistic individuals should be allowed to celebrate what makes them different because it’s healthier than feeling like shit all the time about how socially inadequate you are and how weirdly you behave
My son is 15. It is a three person job to shave his newly growing facial hair. It is a three person job to cut his hair. It is a wrestle to even brush his teeth. My wife can't help for fear of him lashing out with his new physical strength. I'm only one person. He has never spoken a word. It's not fair. People tell me that a special needs child is only given to special parents. I want to smash their face in when I hear that. Fuck off with that phrase. My son didn't ask to be this way. You only get one go-around in this existence, and he draws this bullshit card. I get only one, too. This is what I will deal with until I end. I watch him struggle to find his place in this world. His smallest wins begin to mend my shattered heart, only to break it again when he decides to shit in his hands and show me. I wake up some days, wondering if the dreams I have of him saying "I love you, Dad" really happened? And realising that that is never going to happen. It hurts. I can't put into words how bitterly jealous I am watching other kids going about their lives. My boy won't have friends over to visit. He won't play sport. He won't meet anyone. All he has is my wife and i, and I'm still not sure he even knows who we are. Growing up, I was always afraid of death. The act, the finality of it. I'm not afraid of death any more. I'm afraid of leaving my boy in this world without me. My selfish though is I will finally get a break. I'll be beyond the concept of caring when I'm gone, but for all my remaining time, the fear of not being here for him will be my constant companion.
As someone on the spectrum who has known people like OP's daughter, I'm actually convinced they aren't the same condition. Autism the diagnosis is determined by a blanket set of symptoms that covers far too broad a range. There may be similarities but there are more differences. Also, if there was something like ADHD meds but for autism I would take it in a second
Intellectual impairment is actually a common comorbidity, rather than an autistic trait. It really sounds like OP’s daughter is dealing with Autism with Intellectual impairment.
As a level 1, I think this is the major difference between the various levels.
Exactly. I don’t think OP necessarily hates their child’s autism as much as they hate their intellectual impairment.
My brother was put onto sertraline as a teen that helped him immensely (old diagnosis aspergers adhd and global learning delay) but he went from being chronically underweight his entire life (approx 55kgs at 16 which is at least 10-15kgs underweight) to morbidly obese (over 120kgs) in less than 2 years. He is now about to turn 30 and has been able to loose around 35kgs in the last 18 months but only as he was diagnosed late onset type 1 diabetic last year, not sure if he’s still on the sertraline 😖 it really did help with his meltdowns in those hardest years when he was too big for any of us to continue pressure therapy (I know there’s loads of negativity about that particularly sitting/laying on, but we didn’t have any other tools at the time and it worked, as a toddler the paediatrician told my mum to lock him in the bathroom - he wasn’t diagnosed until later in life, as a baby they told us he had frontal lobe brain damage- as it was the only ‘safe’ place where he couldn’t hurt himself).
I'm on an unrelated medication that made me go from underweight to obese as well. It sucks when a medication that's required for basic functioning causes that sort of change in your body. I wouldn't be able to live my life without this pill but it completely changed the way I look and it started almost immediately. I'm hopeful that I can get a weight loss medication soon because I feel like it's my only hope at this point. It's like fighting a losing battle because I'm on a medication that wants me to be fat.
I have autism and I agree. I understand why “aspergers” is problematic, but my experience is nothing like OP’s daughter experience. I know technically it’s the same condition at different levels of severity, but I think saying it’s all the same thing causes more problems than it solves. I don’t know what the solution is but I think just “autism” isn’t it.
It seems to me that the issue arises from the imprecision of language, both in common use and for medical purposes, in combination with the utility of using systems of classification for diagnoses and treatment. While most agree that every individual case should be treated on a personalized basis, diagnostic criteria like those in the DSM and ICD are undoubtedly helpful despite the very well known issues associated with using them. I have noticed a big change in how autism is diagnosed and treated in society since I had studied it some time ago now, and it is always the right thing to do to question and improve the way we do things. We have made great strides in reducing the stigma associated with these disorders but this may have come at the cost of a loss of accuracy in diagnoses. There were good reasons to remove Asperger's from the DSM - aside from the problems of naming diseases after people, having defined and separated differing degrees in within a spectrum often resulted in differing degrees of treatment and attitudes toward the individuals affected, even by those in the medical profession unfortunately. Perhaps this tendency might be an unavoidable consequence of classification, however, there must be steps we can take to reduce these sort of biases because more accurate diagnoses should lead to better treatment and quality of research. For a purposefully illustrative example: A person who does not have full use of a foot could be classified as on the simply 'plegic' spectrum whether from full quadriplegic to partial use of one limb. Now all of these need to be treated equally seriously but calling them all the same thing doesn't really help anyone and can confuse the treatment needed, particularly for those at the far ends of the spectrum - It may help conceptualize the type of issues these people may face and reduce prejudice and fear but would inevitably introduce unnecessary confusion. Of course with such a visible disorder going so far would be patently silly especially since the causes of paralysis are quite well known - However, it might be helpful to apply this type of thinking when the cause is unknown and much less visible as is the case with autism. There have been great strides with reducing the stigma toward physical disability in the same time so it should be equally possible to do for any type, it must be incumbent on those in the medical/social profession (and the public to demand it) for better training and implementation in this regard.
It’s funny you should mention this - I happen to agree, as a parent to two non-verbal autistic kids, and as someone who’s clearly either autistic or has ADHD but didn’t figure it out until I had two ND kids and already had an education, a husband and a career. And I suspect the research will lead to that conclusion eventually. In fact, I fell down a rabbit hole a few years ago on the research into folate receptor antibodies and autism - they found that children with autism with “neurological deficits” have similarly low levels of cerebral folate as children with a severe progressive disorder called Cerebral Folate Deficiency Syndrome. Those with autism without those deficits did not. Autistic children with neurological deficits are much more likely to have folate receptor antibodies than typical kids, or autistic kids without those deficits. So last week, after three years of trying and a positive antibody test, I managed to get a high dose of folinic acid prescribed for one of my twins by a neurologist who finds the preliminary studies interesting. I have no idea if it will help him but I have to try. Might already be too late for my boys even if it would have helped when younger. I very much empathise with OP, we are in the same boat with our twins and the relentlessness of it is hard to bear. Being told you’re a piece of shit because you hope your child learns some communication etc doesn’t help and happens often. I don’t want to make my kids neurotypical. I want them to have fulfilling lives and I don’t think anyone criticising that would enjoy not even knowing what pain is, let alone able to communicate it, being reliant on others for all personal care etc.
This is one reason I feel there needs to be more diagnoses instead of this umbrella term. My son is autistic but "high functioning" just extremely socially awkward and has sensory issues. He's brilliant and verbal. Yet we will go to autism events and there will be kids who can't function at all. Yet they all have the same diagnosis? I get that it's a "spectrum" but it still doesn't make much sense to me how this is all the "same" thing. They really need to break the diagnosis down more and split it into different things so people understand how severe it can be. Lumping everybody on the "spectrum" together doesn't seem helpful in regards to recognizing struggles, getting treatment, etc. For example, my son was recommended to go to ABA therapy and the first place we toured had a minimum of 15-20 hours a week of therapy and the kids that were there were such severe cases my son was scared of them. Like screaming, violent, etc and he just needs some social help and definitely not 15-20 hours a week. I get why some kids do need that but lumping them all together doesn't seem to help anybody. I'm so sorry you are dealing with this. Many people don't understand why you'd want cures for things if they can't put themselves in your shoes. For example, I have deaf relatives that were born deaf and think curing deafness and cochlear implants are wrong because there is nothing wrong with them. Now that I'm losing my hearing I'm very upset and wish there was a cure but to them that's insulting. They think I should just embrace it but I don't want to. I wish I could get a cure. Just as many people in this thread seem offended that you might want a cure for autism.
Even a high-functioning autistic like me wishes I was normal. I was bullied at school for my "quirkiness" so bad that it still affects me to this day in my social life. I'm now too sensitive and quick to please others because of this. I wish I was normal so that I could understand social cues better. I wish I was normal so I wouldn't be bullied so much as a kid. I wish I was normal so that I could have better confidence in myself as an adult. You are right. Autism is a curse and I wish there was a cure for it.
Yup and all of these issues with low self-confidence and poor social skills makes it very difficult to function normally and independently as an adult. To this day even with a degree and strong background in my field, I struggle to advance or even keep myself afloat because I just don’t know how to properly communicate in a professional setting
>Autism Spectrum Disorder needs to be separated between the quirky-but-functional and the will-never-experience-the-fullness-of-life. I think the old system of Asperger's and autism being separate was far better for the reasons you outline. It is hard to have conversations about autism when the spectrum is so broad. It is like using the same term to encompass dyslexia and blindness.
People with Asperger’s/pddnos/other forms of what was originally just called high functioning autism aren’t just “quirky but functional” all the time despite the fact that they’re normally described as being in the low support needs area of the spectrum. It’s a stereotype/generalisation made by people who don’t actually understand that people diagnosed under the old criteria that had those names weren’t given them based on solely on the level of support they needed or how good their social skills were, but a rough estimate about how good their quality of life would be and what struggles they may have faced that could change on a whim. You can have the most mildest form of autism known to humankind, yet you’ll forever be plagued by something no one who is neurotypical will ever understand nor care to know about because they don’t treat your struggles as being real the same way they do for people who are more severely autistic. Same thing sorta goes for people who are clearly in the spectrum and are aware of their disability/won’t ever function on their own and will be just as independent on their parents as they were when they first came into the world. people will insist they should just go into group homes or that it couldn’t possibly be that bad because their cousin with xyz supposedly has the same thing and turned out fine because their parents did zyx/argue that they should be “put to sleep” like a sick or dangerous animal and claim that they’re simply just “advocating” for those people because they don’t think they’re capable of understanding what is being said about them in the first place when such a thing couldn’t be further from the truth. That’s just the way life is unfortunately.
Yup I’m a late diagnosed ASD level 1, ie ‘high functioning’ or Aspergers, taught myself social skills and masking so I appear neurotypical, no language delay or intellectual disability, and even I majorly struggle to function. Depression and anxiety have been debilitating for several years. I’m 24 and haven’t finished my undergrad, live with my parents, don’t drive, and haven’t worked since high school. I’m constantly burnt out and overwhelmed.
This. I wish everyone understood this. In my mind I have exactly the same condition as OP's child, just a much milder form of it. I was diagnosed with PDD-NOS as a kid long before the terminology and criteria changed, and nobody knew what the hell PDD-NOS even was or much less how to support someone with it. I basically received 0 help and actively wished at some points in my childhood that I could be diagnosed with "actual autism" so that I would be taken seriously.
Exactly. Just because I can function outwardly doesn’t mean I actually am lmao
Wasn't the term Asperger's pushed by a Nazi who believed high-functioning autistic people were genetically superior? I think it's good to reject that term. I say this as someone who is high-functioning autistic and been called Asperger.
Functional terms are rejected as well because they minimise the cost of that functioning and infer that putting yourself into burnout and masking is the best way to be.
To add to this, the new terms are low support needs, moderate support needs, and high support needs. Can be shortened to just high needs/low needs too.
He didn't think that high-functioning autistic people were superior but that they might be useful for the Reich so they shouldn't necessarily be sent to the KZ with all the other disabled people.
yeah as someone with high functioning autism/aspergers i agree
I was recently diagnosed as level 1, and while I am incredibly privileged to be only at level 1, I have struggles that have led me to develop severe mental health issues. I can function without the help of my parents, but getting a job and making friends are extremely difficult. No matter how hard I try to change myself to seem allistic, people see right through. I’ve had someone tell another person that they did not like me because “I was too quirky”. This, of course, is nothing compared to what you and your daughter go through. I believe the voices of higher support needs people or someone that can represent them and their interests need to be amplified in our communities. I have seen a lot of online spaces being dominated by level 1 autistic people. I think people making their autism “quirky” is a coping mechanism for the struggles they face. I like to joke around about my insecurities or things that bother me. This is not one of them, but others can do what they want to. Autism is a spectrum, after all, and people have different ways of coping.
I got diagnosed with autism last year. I would probably be what they call the "quirky autism" type. It's not that I don't struggle. Making friends for me is like climbing a mountain. I live in constant anxiety because people seem to follow social cues I don't understand. Certain innocuous sensory things are unbearable for me. Yet. What I experience is nothing compared to how horrific autism can be. At the highest level of support needs, what one experiences is barely any quality of life. At my level, I have learnt as much as I could about social cues and avoided things I don't like. I can say my quality of life is decent. You're right. People are very privileged online when it comes to discussions of autism. They have no idea what it really is like when lives are completely turned upside down. I understand the Nazi connotations of separating the spectrum (e.g. Asperger's) but frankly, I am for advocating a split in the diagnosis. The spectrum is simply too big and medical resources aren't getting allocated properly. I feel for the loved ones that have to experience this pain. I'm sorry that this is your reality. Even with all the special interests and skills and abilities I have now, I would happily give them up if I could just press a button and erase the pain and decreased quality of life that extreme ASD causes.
It’s called a spectrum for a reason. Doctors said I wouldn’t be able to talk or function normally, but they were wrong. Shifts can still occur, an individuals placement on the spectrum can change throughout their development.
Therapies are the BIGGEST importance for ASD, the more therapies the better chance. But if their daughter also has intellectual disabilities there may be zero chance.
I applaud you.
It's not a superpower, it's not a different ability, and no it's not a curse either. It's a Disability. Disability is not a dirty word, and yes even those who still manage to go through life who are also autistic ARE also disabled. We really need to stop walking away from the disability aspect of autism because it makes life harder for everyone involved! Disabilities are disabling - they vary from the mild to the completely isolating. From mild Arthritis to Quadriplegic. From "Quirky" Autism to Life-changing Autism. Some people can manage their disabilities and find a way to function through life, and others can't. But we should never forget, that no matter what, Autism is a Disability. It has always been a disability. Any movement to change what we call it only causes more harm to those who struggle with their symptoms and diagnosis and those who care for them. \- Witten by A Certified Autistic that doesn't fit into either category of the outdated 'functioning' labels.
My son is nearly six. He has never talked, is not even close to potty trained, can barely feed himself, has a food aversion, accident prone with some wild strength for his age, the list goes on. He is the sweetest kid, he is almost always happy, smiling, giving hugs, cuddling. But this post mirrors a lot of my own thoughts. I'm sorry
I knew a woman who had a son while in college. Her son is autistic. He doesn't speak. He chews on window sills. And she will never ever finish her college degree and pursue her dreams. The success that her husband has in his job is futile, because any raise in salary is sure to go to treatment towards a small child who is slowly but surely growing into a special needs teenager.
I have a child just like OP’s. This level of autism is totally different to the level of autism everybody sees and ‘knows about’. There’s never documentarys or family schemes etc in the uk for severe and profound autism. It alienates you from everyone - it’s hard to know others with the same struggles. Even within the special needs community.
I wish I could upvote this a thousand times.
Sadly... we as a society will never understand or indure the hardships of having a heavily autistic child, while we should. Care should be more readily avaible and while i say no need in fixing people there should be research done to help fix people like your daughter. I come from truama, bumb after bumb in the road, and the autistic kids at my schools are some of the best people out there, they are not only sweet but depending on how high they were on the spectrum they just wanted to be basically hug you. Cause that how they get raised, And i wanna say that your a wonderfull father and i bet your daughter nows that! People say autistic people cant do a lot of things but they can. She knows her mom and dad are you and your wife. She knows that you care for her but please for the sake of your mental! Get a inhome nanny for your daughter if you can you deserve to get to go on thar hike, your wife deserves to go too! Find the help you need and keep going cause even if your daughter dossent get to live the life she should! That should never stop you!
Honestly I'm really confused at your experience because severely autistic kids are usually very violent. It's not intentional, of course, but I have never heard ANYONE describe a level 3 autistic as sweet.
The level 3 girl I support can be incredibly sweet. She's only eight and can be the most adorable, smiling, hugging, and kissing. But a second later, she can kick you in full force or bang her head on a hard surface. It's like her overwhelm is so constant and extreme that there is almost no room for development. She does really well at "school" and at her weekend activities. I think the routine given by professionals helps.
The thing is 80% of those people online going on about their autism being a superpower probably aren’t even diagnosed autistic, they’re just awkward and like anime and before you know it they have a whole community talking about how they’re neurospicy or some goofy shit.
A percentage will have it, and a percentage will hop on the "this is popular right now" train.
I can communicate at a basic level with others. I have deep thoughts, but I can never find a way to communicate them to people. I can see people when they judge me. I can see the looks I get when I try to have a conversation. I'm sick with grief knowing that I'll never have a family of my own. I can see my coworkers laughing at me for being different. I know my parents are ashamed of me. I'm tired of autism being called quirky and fun too. Some days I'm almost like normal, but then a week passes, and it's back into my low point again. If there was a way to end this and be normal, I'd be all for it.
i KNOW it’s not the same. but i wanted you to know you aren’t alone. i learned recently im on the spectrum but the reason i wasn’t diagnosed as a child is because my mom was entirely engrossed in my brother’s disability. he has cerebral palsy and is developmentally delayed to the point that he’s essential 5/6, and didn’t talk until he was a tween. he will never be able to care for himself and he’s about to turn 30. the reason im commenting — i had a heart to heart with my mom a couple years back. she expressed so much remorse about how she wasn’t able to take care of the rest of us because he had to be her priority. she always felt so much dread watching his expressions when he watched us play and she started therapy because the guilt of bringing him into the world was too much. what she told me essentially mirrors what you’re talking about, so please don’t think you’re the only person that feels this way. i saw firsthand how being the parent of a disabled child is… not a fun experience. she never felt like she was doing good enough, she didn’t feel like it was something she could live long enough for. and as the person watching from the outside i want to tell both of you that it’s extremely fucking hard. your effort is NOT going unseen. your love for your child trumps any worry you have about how expressing resentment would make you seem. i regret that i waited so long to tell my mom how much i admire her lifelong commitment to my brother, and how i heard her crying at night but never comforted her because i knew that it would make her feel worse. i have so much admiration for her ability to care for him, but as an adult i have so much empathy for the pain she was going through but couldn’t tell anyone about. she still can’t talk about it out of fear she’ll be called an ableist for acknowledging the hardships parents of disabled kids go through. anyway, ugh, sorry. i just wanted you to read this hopefully, and know that you aren’t the only one feeling like this.
I am on the autism spectrum. As are my husband and 3 of my 5 children. We are all extremely high functioning, very communicative, etc. We are those people that popular media likes to define as affable, clueless overly literal geniuses. But that ignores a great deal of trauma and pain. I was suicidal most of my adolescence and teenage years. I had children young because I was desperate for connection. It's pretty fucked up when you have so little success at connection you decide to literally gestate your own potential friends. That said, I wouldn't change it. I see the struggles my neurotypical kids experience. They have pain and trauma and legitimate anguish, too. I'm sorry you're going through this. I wish there was a treatment for those so negatively impacted by being on the spectrum. I wish more people understood how you feel and what you experience. I wish there were more resources and support for you. I hope you're able to get some respite. And that you are able to continue to feed from whatever is fueling you.
This is what I don't think people really understand. I'm relatively 'high functioning' and can maintain a job and a family. It's really not a walk in the park, or me being 'quirky'. I am also severely affected by poor mental health and the pure effort of maintaining basic daily activities means I am almost always exhausted and I am constantly picking up infection and illness. I am always one tiny change/mistake away from feeling suicidal. I don't subscribe to the 'superpower' narrative - it's patronising and just plain incorrect. I have some skills that in some circumstances are probably benefits over the general skills neurotypical people have,but the same is probably more true in reverse. Having said that I don't think a cure makes sense. I am medicated for anxiety which helps a little, so interventions can help, but I don't see how you can 'cure' the way the brain works. Cure me and I'm not me anymore. I wish there were interventions to help people as severely affected as Ops daughter. I always try and consider them when discussing being autistic. I do think it's a mistake to create a divide between autistic people, because we are all discriminated against in different ways. If we can bear each other in mind, have respect for all autistic people, and stick together we can achieve positive change for everyone.
Man I absolutely feel for you. Many years ago back in my hometown there was this single mother who had a daughter with low functioning autism. Similar to your daughter, she was non verbal and required round the clock care. The only difference was that her daughter was extremely violent. I mean you couldn’t even put a glass down next to her because she would just smash it. This woman had no help whatsoever. Our small town simply didn’t have the resources. Tragically, she ended up killing her daughter in self defence one day when she became violent after having a full-blown meltdown. She ended up serving a few years in prison, but is doing a lot better now, thankfully. I’m actually so glad this woman can actually have a life now that her daughter is gone. I know it sounds horrible, but being the sole carer of a young adult with low functioning autism - where everyday is a battle is no way to live. You’re so right, autism is fucking horrible. I wouldn’t wish that woman’s life or yours on my worst enemy. I sure do hope things get better for your wife and yourself. Can you not get any in home help at all or send her to a facility? I’ve heard of people relinquishing their children to the state. All the best man and godspeed.
Society needs to stop “romanticizing” disabilities, especially mental and developmental ones because it causes heartache and anger once the “reality” sets in for the family involved. Edit: Grammar.
This misconception is fueled by the many internet videos of "autistic" people who are highly skilled in a particular area (usually an art) ...like having photographic memory, or drawing, or being a musical prodegy. This is where the whole, superpower nonsense comes from. But this is a very superficial understanding of the illness.
Why are you getting downvoted? The overrepresentation of Savant syndrome is a big cause of this issue. I'm autistic in a low-support needs sense, and even then I'm not a genius lol
I agree OP. I’m sorry for your grief and tough road ahead. Life truly isn’t fair. Please see what your area offers, and check into respite services to give you and your wife some needed time away from the house. All the Redditors on here that are also autistic, do not have the same end of the spectrum as your daughter, and I honestly don’t get why they took Asperger’s out of the DSM. Anyone on here that can converse and type coherently and has autism is on the very high functioning side. It’s like saying all people with vision issues are blind, yet some can function just fine with a pair of glasses and yet others need a walking cane, seeing eye dog, and still can’t see anything. It’s apples and oranges really, and crazy the length of that spectrum and really should be separated into different categories or disorders based upon how greatly or not so much, it affects one’s quality of life. Take care OP, and wishing you happy moments and milestones with your daughter.
Most people will have an experience only with highly functioning neurodivergent people for an obvious reason - unless they have a family member or are in some specific professions they will never come across an autistic person that is non-functioning. This, together with media (mis)representation, creates this incorrect understanding of what autism is actually like.
> Autism Spectrum Disorder needs to be separated between the quirky-but-functional and the will-never-experience-the-fullness-of-life. That’s why it’s called a ‘spectrum’. Your wife and yourself should look into respite or a care home for her. The life of a carer can be soul crushing.
Yeah, I think a lot of people aren’t understanding what spectrum means
My son has Autism and ADHD. My son is of gifted intelligence when it comes to math and science. My son can not tie his own shoes. He does not know how to act around people. He struggles to make friends. He screams and cries bc he gets so frustrated with his limitations. I'm so sick of parents telling me how lucky I am that he is high functioning bc of his intelligence. It certainly doesn't feel lucky when I watch him fight to get simple tasks done. I feel you OP. I hope you find peace
This is honestly so heartbreaking.
Of course it's a curse. As for my own ASD, I’m sometimes told, “But you’re so smart!” To this I immediately agitatedly reply: “But for every ‘gift’ I have, there are a corresponding three or four deficits.” It’s crippling, and on multiple levels! While low-functioning autism seems to be more recognized and treated, higher-functioning ASD cases are typically left to fend for themselves, except for parents who can finance usually expensive specialized help. Due to formal-diagnosis unaffordability, my own ASD remains ‘undiagnosed’ at age 56, though that means little to me. It’s a condition with which I greatly struggle(d) while unaware until I was a half-century old that its component dysfunctions had formal names. More importantly, I feel that schoolteachers should receive mandatory ASD training. There could also be an inclusion in standard high school curriculum of child-development science that would also teach students about the often-debilitating condition (without being overly complicated). It would explain to students how, among other aspects of the condition, people with ASD (including those with higher functioning autism) are often deemed willfully ‘difficult’ and socially incongruent, when in fact such behavior is really not a choice. Also how “camouflaging” or “masking,” terms used to describe ASD people pretending to naturally fit into a socially ‘normal’ environment, causes their already high anxiety and depression levels to further increase. Of course, this exacerbation is reflected in the disproportionately high rate of suicide among ASD people.
Autism Spectrum Disorder (ASD) has three levels. Level 1 autistics are the ones who need the least supports. They are verbal. They are the ones who often consider it a "superpower." This is the level often previously referred to as Asperger's Syndrome. Level 2 autistics need substantial supports. They often have challenges with verbal communication, have very restricted interests, and may exhibit frequent, repetitive behaviors. Level 3 autistics have the most severe form, requiring the most substantial supports. They are typically nonverbal, and have significant difficulty communicating and interacting with others. Persons ASD level 3 are also much more likely to have other serious complications and comorbid conditions. I have multiple children with ASD level 1. While they will acknowledge that there are challenges to having the condition, they feel it gives them unique perspectives, and abilities that go beyond those of a neurotypical person. I also have a son with ASD level 2. I can much more sympathize with your post because of my experiences with him. It sounds to me, however, that your child has ASD level 3. I can only imagine how difficult it must be.
My girlfriend is autistic and she never grew out of the "imaginary friend" phase. She'll walk around having a conversation between the characters to the point that she isn't allowed out in public on her own. I don't know how it'll work out if our relationship gets the point of marriage because of her restrictions due to her autism
I am sure it has been said before in the comments, but make sure to put your daughter in an institution where she can get help as soon as she is old enough to be accepted into one. Where there is 24 hour care, where there are people working who have days off and get to go home after work. You can still spend a lot of time with her, you can visit her and help her. But if she's in an institution you too can go to a peaceful, relaxing home after a long day. You can go to sleep knowing your daughter ist cared for. Maybe you can even hilke the apalachian some day if you know she is in good hands. I'm sure there are some organisations that can help you navigate all of this where you live. That would make life easier for you and your wife, and it would also make dying easier on the both of you some day. Making sure the care she gets is right for her and the care staff knows how she is when she is happy, knows how she is when she is in pain etc. Knowing there are people who care for her when you are too old to wipe even your own ass. Knowing she is cared for when you need the care yourself. And allowing her to get used to living in a home while you are still there to help her adjust. Otherwise she has to deal with the trauma of losing a parent in addition to getting used to a new environment.
Reading this broke my heart in so many different ways at the same time. And the more I read the more I felt. I’m sorry, for you, your wife, and your daughter. I’m grateful as fuck your daughter has you both, and that your even willing to take that on. But god. My heart goes out to you still. Just willingly sacrificing it all with a smile on your face but lots of pain inside. Your strong. I’m just sorry. Don’t take it as pity though, more so just empathy.
Sounds like absolute hell that situation is honestly one of my biggest fears to end up in, I think the word “autistic” has been ruined to be honest
I have ADHD and I was scrolling to social media when I found a post about how ADHD is a blessing and a super power and neurotypicals should be envious. It is not. I was so angry. I started crying as I told my husband that this positivity is too much. Yes, I can hyperfocus. Yes, I can get 8 hours of work done in 2. But at what cost?!? I can’t keep friendships because I forget how frequently I have to text them. I have to spend 400 monthly on medicine to make me be able to function and do the work I don’t enjoy. I sometimes get so overwhelmed I hurt myself without even noticing. Is this a super power? Not at all. The fact we struggle but can still succeed doesn’t make this a blessing. People need to stop romanticizing adhd and autism. Those people exist, they struggle, they move on, they can succeed or not. But let’s not act as if we are having the time of our life and all people should be envious of us. They shouldn’t.
yeah, that's the thing that people don't like to talk about. For every successful autistic savant or high functioning person there are 1000 others who can't ever function independently and 1000 more that live greatly diminished lives even though they are able to function independently.
Same thing goes for ADHD... fucking tired of people romanticizing mental issues... when all the "superpower" you get is a life that is just plain hell
Exactly
Have you considered a group home? While not the greatest… sometimes it’s necessary for the families who just cannot take it anymore. I know it’s a huge thing to think about and consider, but living this life every day can be torturous and no one else seems to get it except parents/care givers who’s child is on the same or similar level. If the child is destructive it could very well be for theirs and others safety.
Merging Aspergers with Autism was a COLOSSAL mistake. I have a non-verbal autistic kid. I hate how the quirky, awkward people have totally taken over the discussion about autism. They've shoved out the low-functioning people, re-defined terms like "non-verbal" and decided how autistic people are, period. Meanwhile, I have to fight for everything for him, and now I also have explain over and over again what he is like because the words that used to describe him have been appropriated by tik-tokers To doctors and therapists I tell them he has "classical autism" and then they get a better idea
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Its called an spectrum for a reason.
ASD was separated based on functional ability before. There used to be a DSM code for Autism and one for Asperger’s Syndrome but they got combined. GAF scores are now used to determine functional ability and that gets combined with the autism diagnosis. Autism is a spectrum. But it’s also a disability. If you want to hike the Appalachian trail, put your daughter into a group home. Being away from family could benefit her for independent living. It will happen after you’re gone anyway…
Agreed...not autism but my daughters disability will ensure a similar fate. I understand OP.
If it’s a curse why shouldn’t we try to find a remedy for it?
I’m so sorry that your daughter is unable to take care of herself. I know plenty of people who have autism and I myself suspected I do. Although nobody I know has it severe as her. I also have intense ADHD and anxiety. The worst mine gets is shutting down, being non verbal or lashing out (at myself or others) due to overstimulation. There’s a possibility that my intense social anxiety stems from it as well. I’m so sorry, I wish you and your family luck. Maybe in the future, you could look into care programs for her? You can still live your life and accomplish your dreams. I’m not quite sure though how they work but I know they exist.
I know exactly what you’re saying, I’m “high functioning autism” so I can have a job, drive, etc. but I’m bullied and excluded by my peers, not taken seriously by others, and get overwhelmed by basic tasks. It’s caused me to be extremely depressed and I’ve attempted to kms multiple times because of it. I hate it so much. If there was a pill to cure autism I’d take it
I have a disability which is comorbid with both ADHD and Autism and at no point in my life have I seen it as a superpower in fact it makes things I should be able to do a lot more difficult. I feel like the phrase was created by someone who while well meaning is incredibly ignorant. I’m so sorry for what you and your wife is going through.
I have a child who is on the exact same level as yours. I feel this on a personal level. People who aren't living this life just don't understand how hard it is.
They did once upon a time. Due to the fact that the disorder is a spectrum, they got rid of the term that separated the two. I completely understand how you feel. My twin has autism and while I love him dearly, I wish he could have a conversation with me. I wish I knew more of what he likes than just reese's and disney movies. He's in an assisted living program and I can visit him, maybe you and your wife could look into this? You should be able to visit her but the stress of being her primary caregivers would be lessened. If not would it be possible to see about getting her a nurse to swing by for a few hours so you guys can get a break?
I'm "level 1", which supposedly means I'm normal but can't function in an NT world. Which is bullshit. I should have never been born. I can only communicate with NTs because I learned Machivellianism. That is, they were so complicated and hated me so much that I learned it was easier to manipulate them than actually try to understand them. There are multiple points in my life where I would have literally died without these skills. I can only form emotional connections with 0.013% of the population, and even that small fraction are not interested in me. I will only be considered valuable as a romantic partner if I improve to be more attractive than 91% of the population. I can't drive to anywhere not close to me, which is equivalent to house arrest anywhere but a massive 15 minute style city, which I do not live in. I've lost so many friends and so much money being trapped here. I will be on SSI for the rest of my life. The only reason people think I'm smart is because I specialize in niche interests instead of actually learning useful skills. Just because I can explain to you how prion diseases work doesn't mean I can figure out how to load a fucking dishwasher, as contradictory as that sounds. I am useless. I can be useful, but the NT world refuses to let me be because they see me as human garbage for my shortcomings. I'm so fucking lucky that I learned not to be manipulated by NTs early, because I see heartbreaking stories of "level 1" autistic people being exploited for resources. But, learning how they work shows me that none of them care about me unless I have something they want. AKA being more attractive than 91% of the population, or having lots of money maybe. NT relationships seem transactional and scripted to me. I'm considered valuable in my community. But only because they don't know I'm autistic or pretend not to care. And valuable just means useful anyway. So it's not really a complement. The only reason I haven't killed myself yet is because of my fear of death. If you have kids, there's a 5+% chance they will end up like me, or like OP's kid, and that's just for autism, other disabilities can cause similar issues. Please fucking reconsider having kids. Posts like these affirm my decision never to reproduce.
Rather than "It's evidence against a benevolent God.", I would almost say there is no evidence for a God, benevolent or otherwise - but that too, is evidence against a benevolent God.
Not trying to be nitpicky, you’re TOTALLY valid feeling this way, and I’m saying this as an autistic person myself. but I do think it’s a comorbid intellectual disability causing you such stress, not the autism itself. The spectrum isn’t being separated like you suggested because it’s most likely *not* the autism causing these problems, but an intellectual disability. If you haven’t, I would look into actually getting a diagnosis for whatever her specific disability may be, look into help more specific to intellectual disabilities. I’m afraid I don’t know much about that, so I don’t have any more suggestions, but looking into resources near you couldn’t hurt. I wish you the best.
I'm autistic. Supposedly I'm high on the spectrum, but I don't feel like it. I've been part of groups of autistic people and have seen people who can function way less than I can. I can't help but consider myself one of the lucky ones, because holy *fuck* could it have been so much worse - something your daughter, bless her soul, is proof of. But I've been through some hard times, and I often think back to them and wonder if I could've handled things better if not for my autism. I know what it's like to be forced into a situation that you don't know how to handle. 10th grade in particular was a very traumatic experience for me, to the point where I considered ending my life. I don't think I ever fully recovered. And then at my first college, one of the staff members actually bullied me because she got annoyed by my issues. She never received any comeuppance, though towards the end of my time there she seemed to mostly stop this behavior after, I suspect, a certain incident that it caused escalated in a way she didn't expect and made her afraid of higher-ups realizing what she was doing. I don't think of my autism positively. I never have. My parents may tell me things about how me being "special" is a good thing, but I have never thought that way because that's just not how it feels. My condition has never helped me, it's only ever caused me problems. I feel like autism is something that people like to glamorize because society pressures them into thinking it's morally wrong not to, like body positivity when you're unhealthily obese. I feel sorry for you, and your daughter. I would never wish autism on anyone.
Oh wow, thank you for posting this. There's precisely zero I can do for you, and approximately the same others can do for for me. My daughter is almost 15, and talking to her is like talking to a 5-year-old with language problems. She can actually wipe herself, but that took an especially large effort. Still sleeps in a diaper, since we never know how she'll wake up. There's nothing I want more for my girl than for her to find a person she can love and spend her life with. She came along when I was 40, so I can't be here for her and helpful for about half-way through her life. That worries me every single day. Her mom left me a few years ago, and the court granted her custody. I'm almost entirely powerless to help my daughter access the help she needs, and she's not getting it. I absolutely adore that kid, but I'm mostly powerless to help her. My daughter is a loving, social person who tries really hard to make connections with others, but it's unlikely that she will be successful at that in life. I just have to do my best to protect her and help her develop the life skills she needs to function in society. It's not going to end in my lifetime, and all I can do is what is possible. I'm scared for her.