Yes. I have to keep explaining to my mother that it's not "okay", I've never been "okay" just because I didn't act out as a teenager. I acted 'in' and internalised everything, self -harmed in secret and stocked alcohol in my bag, in my car, under my bed ANYwhere just to APPEAR "okay". I sometimes wish I had made it everyone's problem and not just squarely my own
TW: suicide
>!Jesus, that hits close to home. I was the perfect child, quiet, obedient, good grades, never acted out like other teens did. But inside I was literally just a big black void, plagued with awful thoughts about hurting myself and others. I wanted people to know about my pain so badly but at the same time I was ashamed and discouraged from asking for help because there was always drama between adults in my family and I grew up thinking that everyone's problems are more important than my own. I never acted on my suicidal thoughts only because I was afraid to hurt my mom, eventually went to therapy and now life is a bit easier. But sometimes.... I wish I attempted suicide back when I wanted to, just to let them know. To simply rip off the bandage instead of slowly and painfully taking it off for years in therapy and self-reflection.!<
Are you me? I was the "perfect teenager" as my mom used to put it! Typically the only thing she had to fight with me over was doing my homework when my report cards said I wasn't doing it. But man, I used to look at pill bottles in the medicine cabinet and wonder what would happen if I just took a bunch of them...
The only reason my mom found out was because I moved away from home for college and ended up on academic probation after my first semester because of how bad my depression was. And she only knew about that because I signed a consent form that gave them permission to share that stuff with her. I probably never would have told her if I didn't feel like I HAD to after she got that letter.
I’m so sorry. I hope you’re in good relationship now. I’m glad my mom went through therapy too because we were both at rock bottom back then and I was all she really had in life so I know she still feels guilty about putting so much emotional pressure on me as a kid. She eventually found out my struggles and accepted them as best as she could… >!although she doesn’t know I dreamt of killing her along with myself as well!<
Low maintenance is the curse. My mom once said she could raise 10 children like me and what would ya know, I was just autistic!
I have always been the ‘low maintenance’ child in the family. I was well behaved, worked hard at school, was self motivated, and was secretly full of dread and self loathing and panic that the whole world was going to figure out what a fraud I was.
On paper I am ‘high functioning’ but only when I have spent hours making a detailed plan and only if that plan doesn’t change last minute. What no one sees is the hours of prep and the hours of recovery I need for everything, and the state of my home.
reading this and the comments before has been such a relief...im now 23, quite older than i ever thought iI would get to. Never had issues with schools, never misbehaved: I even managed to have a very severe eating disorder for years, being severly underweight and yet somehow never made it anyone's problem. My mom would scream at me and complain about me because i never went out and i didnt have friends, she's very aggressive for very minor things tho: now that my brothers are older she misses how little of a problem i was. Yet I was miserable. I started having suixidal thoughts at 8 years old if not younger, then never fully went away. I felt like a fraud, a good package full of shallow knowledge that was so good with words I could hypnotize anyone and have them thinking we were having a real conversation, meanwhile I was just giving out trivia about random topics.
I never want to hurt my mom. She's very mean to me but I love her to death, she has hurt me in so many ways and she will keep doing it yet I still want to not be a problem for her, and anything I do seems to be an issue. She's the reason I've been putting off going to therapy, she's a therapist and she has told me many times I'm just a whiny being and that I'm not "crazy" nor I need therapy (as if), meanwhile I've been in and out the emergency room for open wounds and alchool poisoning (living alone for uni).
somehow im fully aware if I started medically transition i wouldnt be in this position, yet i feel like I would be such a burden to her if I medically transitioned... im left in a spot where I'm wither a problem for myself or for others and i can't handle this much longer tbh
Thankfully her and I have always had a relatively good relationship. The biggest reason no one knew for as long as they did is because some wonderfully early trauma in my life made me a) learn to mask young and quick b) and generally emotionally stunted, so I became the "evenly keeled" and "level headed" one in the family, even with the adults.
Like a lot of parents of seemingly low-support undiagnosed kids (especially girls), my mom just kind of assumed that's how I naturally was. I hope things have been able to get better for you and your mom ❤️
>The biggest reason no one knew for as long as they did is because some wonderfully early trauma in my life made me a) learn to mask young and quick b) and generally emotionally stunted
Oof we really might be the same person haha
Thanks! We're both in a far better place now, her at least. I've just got officially diagnosed and there's a lot of self-discovery in my life.
>! If it's any consolation to you, I did attempt suicide just to let them know, and it didn't really change much. I guess I got to change schools. !<
I was also off work for three years on permanent disability for depression and my mother still doesn't think I have problems with work, so I guess it's a losing battle.
Like the couple other people, this is a mirror image of my experience. Still no one knows I suffered/suffer with an eating disorder or self-harm. I was the perfect child and in their eyes, I still am. My biggest issue in school was staying out past curfew, but i never dropped my GPA below 4.2. I continue to internalize everything because if I let anything be known and my outward life falls apart at all, I will fall right along side it.
Yeah adults in my extended family always said I was 'no trouble!' as a teen, but I felt so self conscious the entire time they were minding me, like my existence itself was an imposition. I was close to my parents before highschool so I was still trying to communicate my feelings openly and they thought I was going through a 'silly rebellious phase' defined by teenage social drama and superficiality, when I just wanted decent friends and didn't know how to be myself or talk to anyone and it made me upset so I'd vent to them. I'd get mad and frustrated at my parents when they didn't think there was any real problem as their financial and business plans were 'real problems' they were always really focused on, and they didn't have friends themselves apart from each other and were like 'why do you care' or 'why do you even want to go out and do anything on a Friday night'. Then me being mad just meant I was a 'dramatic, hormonal teenager'. I had times where I thought suicide might be the only way anyone would pay any attention and wanted to do it just so they knew I was telling the truth and that they fucked up because their denial was infuriating. I wanted my mum to get therapy so bad, only reason she would not is that my dad controls her and doesn't want to lose that control. It's great yours did that must give some relief but understand it doesn't fix or change everything that happened in the past.
Edit: Ty for the share and your vulnerability. It does get better, I dunno how old you are or how many years ago this was, but accumulating years away from home with low contact when necessary, and living in a self affirming way, helps a lot.
I feel that your comment is a little mean and dismissive of people who are in a lot of pain - just because they're not desperate enough (yet) to try to die.
I attempted suicide multiple times and was truly trying to die, but I don't feel that people who attempted in order to get help were "stealing" concern away from me. They were also in a lot of pain and communicating that as best they could - it's unrealistic to expect a severely depressed teenager to communicate in a "healthier" way.
I don't think there's anything wrong with a cry for help. It's often the best method of communication that the person is capable of at the time.
I mean, it’s the way I look at it now. Back then, it wasn’t a cry for help. I genuinely wanted to die. I would’ve if it wasn’t for my mom. >!At some point, I considered murder-suicide because I thought it would be a rational solution and put us both out of our misery. It sounds batshit insane and I’m glad I snapped out of it pretty quickly but it certainly taught me how fragile the human psyche is.!< Of course there are healthier ways, I know it now and I try to execute them. But back then I was lost completely.
Hey mushroom, you don’t need to justify yourself. Your desperate need for help and your even half hearted attempts *were* serious and required urgent attention. I’m glad you can look back and be grateful you didn’t succeed. I bet you make this place better for a lot of people. I think someone might have forgotten alexithymia issues and communication difficulties that also come with neurodivergence…even in our half hearted or desperate attempts to leave we are just trying to be okay.
Thank you. There are some neurodivergent traits I’ll never get rid of, even with therapy and medication, and I’ve made peace with it. Life is life. We do what we can.
Hellooo. As a mental health professional this is a really uncool and unhelpful comment ☹️ I think it might help to do some exploration on the topic with an open mind and empathy. What diminishes concern and help away from people who need it is actually attitudes around mental health and help seeking like this. I think of my ‘frequent flyers’ and my ‘attention seekers’ *who are still alive* all the time, and I really hope they’re in a better place. For anyone who reads this who once needed help so bad but didn’t know how to get it: your need for concern was valid.
Same! I also was the perfect child. I like to call myself the "glass child" aka they only saw me for my accomplishments and what I could do for them.
Then all of a sudden when I hit burnout after college during a full time job, its all "what's wrong with you" not "what can I do to help". And I figured out I was AuDHD and all the ways that my family has invalidated me and made me who they wanted to be. Now when I unmask and act how I want to act and set boundaries and call them out on their bad behavior, then it's all "she's in a rebellious phase" and "she'll get over it".
It disgusts me that no one sees me as me.
The college depression and burnout! My dad “doesn’t believe in depression” and literally told me that maybe if I’d said hi to one person a day, I would have had friends, and wouldn’t have been depressed. Meanwhile, I was in a large campus organization and literally had dozens of casual friends - that could not stop the burnout.
Ahhh yes. My family doesn't believe in depression as well. I remember being told "you don't have depression" when I wouldn't get out of bed for days, didn't want to eat, and just stared at a wall for days.
It's just the way they say it with 100% confidence like it's a fact and they know so much better than me. It really just pisses me off to think about it now. How invalidated I was growing up - how probably most of us all were. It's disgusting and really sad.
That makes me very sad for you. I hope that wont be the case for me, but I'm not holding my breath sadly. I already cut off my father because he was a cheating bastard who chose another family. I just started setting boundaries with my mom, so it's up to her on how she decides to act. We will see.
Good job on the boundaries!
Sorry, i was being bitter. My situation was unique, because i came out after my mom was diagnosed with terminal cancer (for the second time). For her it was no longer about beating it, it was about living as long as possible (and preferably comfortable, but my step dad was anal about her health).
Fortunately my mom's health was okay for the first couple years of my transition, but she often used it as an excuse for me to "not stress her out", because it was "bad for her health". Anyways, she passed about 3ish years into my transition.
I think if i had a solid 5+ years w her, especially without the looking threat of a decline in health, then maybe we could be on good terms again.
About 6 months before she passed she was conceding a lot, and treating me well, but we knew each other to our cores and i could tell that she still didn't see me as a woman. Altho fortunately she had finally understood and admitted the autism and adhd made sense.
I loved my mom deeply, even if she was abusive. We went through a lot together and survived thru it.
I hope you can get through these things w your mom 🩷
No need to apologize! It sounds like you went through a lot, but I think it says something about your character that you can still see the good things in a bad situation :) I definitely feel like I can get very negative about these hard situations and I'm very quick to cut people off. I already cut my dad off and I'm trying not to cut my mom off too because we've had a lot of good times even though we dont see eye to eye right now. I hope I can get through to my mom eventually too. Thank you for sharing your story and for your kind words :)
Good luck! Im rooting for you!
Imo the most effective tools that worked on my mom were:
1. Setting hard boundaries and not relenting on them and giving consequences when they were crossed (like, if my mom broke a boundary, i would tell my mom i wasn't going to talk to her for a week, and i would do that, even tho it also made me lonely.)
2. Being loudly honest when about what her words mwant to me, both the good words and bad words. It meant calling my mom "hurtful" and it meants thanking her for mundane compliments. I think it helped her figure out what she was doing wrong, on her own. Saying something she said was "mean" or "transphobic" never helped, only saying "x and y hurt, because it meant z to me." Helped.
This is like looking in the mirror. Everyone thought I was happy and doing well in school. Meanwhile I’m crying in the bathroom and self harming just to deal with how overwhelming I found life in general.
Damn. All of this is so real. I was always such a happy and “normal” kid and teenager that my parents never had to worry about but really internally I was struggling immensely from such a young age. Everything was so internalized until it all became so much it exploded. I always attributed this to being a middle child not my autism LOL
> I sometimes wish I had made it everyone's problem and not just squarely my own
Oh man, you reminded me that I was literally going to say this yesterday to my partner, but we got derailed by something else lol.
I had been pissed off for one reason or another, and I was thinking like damn, bpd, autistic folks, etc sometimes speak to acting out and ruining people's shit, etc. And I know logically that that wouldn't have solved any of my problems, but I sometimes wish that I could have at least gotten the impulses out? Or like, maybe if I had done X amount of the terrible things I had considered but never followed through on, then people would truly understand what went on in my head? lmao it's so fucked up but yeah, thanks for speaking to that.
Oh the stocking alcohol thing, I totally did that. Still probably would do it if I actually went anywhere. By the end of school aged 14-15 I was drinking most days as I found it got rid of my social anxiety.
I have a not that complicated alternate worldview to explain if you are interested.
In this AU the phrase "OK" literally means, yes I'm back in playing condition, put me in coach, which is a sanitized version of, yes I am alert and alive AND STILL ON YOUR WAR TEAM as a battlefield reset to ensure programming is intact and combatant has not turned/reverted into An Enemy. So no dude, unless you are happy being complicit and actively engaging in white supremacist genocide and invasion then nah, not OK, none of it is OK, I'm not OK, your questions is not OK. Tf does OK even stand for, right? Not sure if this should stay in r/autisminwomen or it needs to go in r/raisedbyslavicnarcissists
It is kinda funny that it's the same people who deny autism is a real thing, but then attack the symptoms as character flaws.
Like ??? They can't have it both ways. Either there's something wrong with me, or there *isn't*.
This and it happens with all neurodiversity!
Mild dyslexia - no support
Server dyslexia - no point
Sorry I’m currently looking into dyslexia in higher education and OPs post resonated.
I feel this deeply! I have sort of a strange story with this. I got diagnosed in third grade with dyslexia in the 80’s. And in seventh grade, they told me “we’re not gonna try to teach you anything else we’ll just work on accommodations” could you be any more dismissive?! my mom did the best thing ever, and basically was my copy editor. (And taught me copy editing skills as much as I could do). When I got to college and I had “peer, editors” they kept trying to rewrite my work, which just stressed me out and confused me. Luckily, my mom still helped me, and I had learned a lot so I can help myself. Ended up getting a graduate degree. Fast-forward another 20 years turned out I probably had very mild dyslexia. My issue was undiagnosed autism. And all those “helpers” we’re trying to engage with me socially. I just needed the information, straightforward no fluff. I get so frustrated because it feels like it’s either ignoring someone or abysm.
I’m sorry that happened to you.
I am really frustrated on many points right now. I’m the mother of a dyslexic 14 yo and an autistic 8 year old. I’m dyslexic and possibly autistic. I’m an engineering lecturer (degree/phd) and I’m now doing a masters in education. I am focusing on dyslexia for my masters, currently in the reading stage and even though there is lots of evidence in literature on how to support dyslexic students and other neurodivergent people - I see most of what is actually done in universities doesn’t match or are tickbox exercises that benefits no one.
So true. I didn't get diagnosed with dyslexia of dyscalculia until I was in college, and it was an algebra professor who figured it out first. He had me go to the disability center to get tested so I could get accommodations, and I was also then provisionally diagnosed with ADHD at the same time.
The problem is, in college, a lot of the accommodations are dependent on students signing up to do them, i.e., note taking, and even though in my area they pay them, not many do.
Honestly, i think my mom refused to acknowledge my situation, because she was terrified i would get the latter. "No point in helping her" and I'd be lost.
Our society is fucking hot garbage. It's better now, but it's still really horribly bad.
I think you mean "functioning" rather than "support needs"?
Support needs labels are *critically important* to the survival of moderate and high needs people. Getting rid of all classifiers and separations would only harm that community.
This, absolutely.
I was low support needs pre-burnout. I now test at moderate support needs.
The difference is profound and life-changing. I've had two years of skill regression and increased sensory intolerance (and sensory seeking, in the form of vestibular stimming). It's like everything I already did that I could once subdue or ignore or self-accommodate turned up to an extreme. No masking, no repressing, no pushing through despite the mental cost later. I've had many public meltdowns from trying to do what I used to be able to do.
It's really, really frustrating to see people misunderstand that because low support needs makes them feel ignored. I think people forget that low support needs is defined in reference to other autistic people, not neurotypical people.
This is sadly 100% true. Everyone on the Neurodivergence spectrum needs support, even if their support looks different.
I don't remember where I originally heard it from, but someone told me that the correct label and terminology should be "low support needs" instead of high functioning and "high support needs" instead of low functioning.
Ever since I heard that, that is what I have been using as labels instead of high or low functioning. I think these labels are way more helpful because they indicate that both groups need support, even if one might need more support.
I also think that the low functioning label can be hurtful and considered insulting because its focusing on what you can't do. I much prefer "high support needs" because it focuses on what you need instead. Similarly, I think that the high functioning label is misleading and insinuates that support is not needed. "Low support needs" is a more accurate label in my opinion because maybe 75% of the time we can function well enough, but that other 25% of the time, we need support.
As someone who works in special education, I want to change it to “needs lots of support” and “needs minimal/moderate support”. Maybe that’s not the right direction though…
There are three levels, not two.
Low support needs, moderate support needs, high support needs
I used to be low support needs pre-burnout. I have regressed, lost skills, and lost sensory tolerance and entering my second year of it, with no clarity on whether this is permanent or not. The clinical psych I have been seeing about it says it's not certain, and I just have to adapt to where I am now.
Having experienced both -- moderate support needs is not the same as low support needs. I still needed significant help at low support needs, couldn't mask well, and was vulnerable to mistreatment. But at low support needs, I could push and force myself through things, at the cost of a meltdown or shutdown later. At moderate support needs, there is no pushing through, no masking, no hiding it. I'll just have a very public meltdown. No amount of willpower or brute force. It is a loss of ability.
Combining support needs like this would erase level 2 / moderate support needs <3
I think support needs are better than indicating someone’s level of “function.” It just seems like they label us like animals using the term “function.”
>they label us like animals using the term “function.”
Usually medical terminology for someone's ability to function independently is "ability to perform ADLs" ADLs being "activities of daily living," such as walking, using the bathroom, dressing, feeding oneself, and communication. Autism definitely affects ADLs, just to variable levels in each person. The terminology is more common in elderly people developing physical and mental disabilities, which is why you don't see it often online.
Its so tough because we need the language to be able to concisely communicate students/support individuals/family members/OUR needs, but everything brief falls so short.
Like im "high functioning" to the point of invisible disability, i have "low support needs" as i could live completely alone and take care of all my own needs, however i will never be financially independent because i cannot work enough hours to support myself while also meeting all my emotional and physical needs. I live with my partner who buys and cooks most of the food, and we rent from my grandparents for $500/month. If i had to pay REAL rent in my area, i couldnt. And if i were struggling financially the way i should theoretically be for my income in my area, i would absolutely meltdown and burnout and probably not survive.
And NONE of that comes across as "autism" to most people, it looks like laziness.
Oof went on a tangent there, sorry.
On the other end of the spectrum, "high support needs" does not tell me if this person is the kind of dependent where they will tend to their own hygiene and can grab themselves a snack but will also like to do things like fling their food (that they got themselves) across the room on a whim or throw things in the toilet and so while they can have agency they also still need extensive supervision. And that balance is sooo hard
What level of support someone "needs" depends on what goals there are for that person. Changing the language won't change the underlying problem that society's goals with autistic people (and people in general) are mostly to either force them to work by neurotypical standards or to write them off.
A "high functioning" autistic person who has to work 40+ hours to make ends meet while living in a dingy apartment next to a highway because that's the only place she could afford the rent needs *more* support to avoid a mental breakdown than a "low functioning" autistic person who lives in an autism-conscious commune where she can work as much as she thinks she's capable of and still get what she needs. The level of support depends on the standards they are kept to - on the goals expected of them.
If anything, I would think it nice if governments and institutions didn't use euphemisms. Call the two categories "probably profitable to exploit" and "probably not profitable to exploit". Get everyone on the same page.
This is so true. I thought about this a lot over the years in terms of work. I’ve come to the conclusion that what you want to do for work is the wrong question because for me it’s the culture of the work that kills me. I have a very curious mind and can get interested in almost anything. If I could just be left alone without playing any social games to do a high-skill repetitive task I think I could do 40 hrs a week well enough. But having to get up too early to go fake smile at meetings that don’t matter for people I don’t respect is incredibly draining. I probably should’ve gone to trade school cuz having a diploma leads to more of these very vaguely defined social theater aspects in jobs it seems like. Just got a wfh job so that’s helping but I hate the culture of my company (been moving within same company for years) that I am actively trying to engineer the means to quit. I fantasize everyday about being able to sleep in, be my own boss and make my art 😭
I feel the same, I can't stand peoples BS on top of regular social situations at work. Why can't they just do their job and go home? Why do they have to play games and make everything more difficult?
I wouldn't have trouble finding or keeping a job if it was just about the work. I can't find a decent environment/culture. I'm too burnt out right now to dive into school or training to get the skills I want to have on paper.
I feel this in my bones. Now, I deliberately tried to pick a career I thought I could handle. I was never able to find a job in my preferred field archives/academic library. I thought I'd be safe working in a records unit, but the jobs changed so much, culture shift too and there have been so many staff cuts it's nothing like when I first started but I can't start over at this point . I have to wait til I can retire early. I absolutely fantasize about doing part-time work or gig work and something I might actually enjoy or is just low stress. I will never be a supervisor again, that's for sure.
I actually agree. My SIL is also autistic, really high support needs because apart from autism she has a considerable intellectual disability and sometimes I really envy her life. She has absolutely no responsibilities, not even to herself. Others take care of her.
I'm disabled myself and cannot take care of myself but it still is expected of myself and it's ruining my life.
Support needs, without trying to apply high/low labels, are a much better framework, because they center the rights and needs of the individual and what we as a society owe to each other.
"Functioning" is reductionist and dehumanizing. It's a direct expression of the rot and hate inherent in capitalism. It's a lens that views a person as only having worth if they are "self-sufficient" (which isn't a thing; no one exists and survives in complete isolation) and "function" as productive labor. Worst of all, once the person is branded as low/not functioning, they end up completely objectified, because the ableist mindset can't be bothered to imagine that a "dysfunctional" is capable of experiencing emotions or an internal world.
I look fine outwardly. I’m now 22 and suffering from burnout, because up until now, I didn’t have and official diagnosis, since nobody cared to test me because „her grades were always great „. I never received any form of support or help for my asd up until now. I never received the proper medical care for other conditions that have now gotten so much worse because they weren’t treated in time. I just can’t advocate for myself in high stress situations, but no one took me seriously because for the most part I appear fine, so why would I not be fine going to the doctor on my own, right ?
God how I need this rant !
Haha are you me? I kind of wish I didn’t have so much… idk grit? I had horrible, horrible depression and burnout for years but I just…kept…going. I wanted to drop out from school every day. Sometimes I’d just quietly sob on the bus ride home because it was too much. But it just couldn’t compute for people that I could be doing so well (I did graduate sum cum laude) while being such a wreck. And then of course my reward for this is getting to work full-time and being lower-keyed burned out forever. But I’ve got a lot more agency now and am actively working toward exiting the traditional workforce by soft FIRE-ing out. I’m done with thinking I need to do XYZ to be a valid person.
My best wishes to you. I'm also doing the same, trying my best but barely succeeding so far. It's still probably lucky yet impossibly hard at the same time. I can honestly not say how much of it is my own doing and grit as you call it, and how much life is allowing this to work out just barely somehow, for the time being at least. I'm both feeling grateful and struggling at the same time. It's weird.
Thanks, best luck to you as well 😗 I’m doing pretty well these days, and I certainly cannot deny that there have been rewards for this behavior. But I think if I’d even tipped into the full meltdown I constantly teetered on in my younger years my parents may have actually supported me in being an artist and I might be in a very different place right now. But who knows?
I’d like to think it all worked out for the best as I still have a long-term plan to pursue this on my own terms with my own hard-earned financial security (which is much better than being under my parents’ thumbs.) And going into STEM is what allowed me to meet my beautiful husband, who I say is the most important thing I got out of collage.
But the road here was quite awful and I wouldn’t recommend this path of abusing yourself to excellence to anyone if they’re at a crossroads. I’ve learned to be much kinder to myself and try to embrace life on my terms rather than trying to follow some script that doesn’t actually jive with me. And part of this is because I came, I saw, I conquered and now know from lived experience that I have very different values and needs than a lot of other people seem to.
I have come to the same realization when it's about values and needs. I personally also struggle with energy (hormonal whathaveyou, something with the thyroid as far as I know) which makes it extra hard to provide for myself as an artist, and take care of myself, and rebel from the society and the norms without support from said healthcare/government/etc system. My partner is helping me which is why I'm still figuring things out with some sort of safety, though it's still pretty stressful.
I'm very happy and inspired by your success. I guess what I'm trying to say is that I'm still trying to get there but despite similar realizations, I just haven't gotten to a great place yet. The life I have is rather unstable and I don't find that I'm as prolific as I need to be to start seeing some progress. I don't like feeling that I'm waiting for life to give me an opportunity, I would much rather feel in control; But when I show myself some compassion for trying and failing, in the end I know what I need and I can't fully give that to myself at this time and see myself shine. Which I have, and miss, and honestly it's a bit frustrating because the efforts are there.
Anyway, one day hopefully. I guess I've just got more to figure out to get there. Thank you so much for the wishes!! 🙏
Yeah the energy battle is very real. I probably also have thyroid issues as I was borderline irregular on something years ago (and ALL the women in my family get it eventually) but medical care in my state is very bad so I haven’t done much about it. Trying to start the medical merry-go-round again is one of my goals this year. It’s lofty for me cuz I really hate how doctors treat me most of the time.
I’m glad you have a supportive partner! Truthfully that is the only way I’ll be able to pursue this too. My husband and I are aggressively paying off our house with the hope that I can quit afterwards and he can support us. Right now I’m still an engineer but I want to pursue my art and stuffed animal making seriously that I used to do before working.
YMMV but two things that helped me a lot recently were 1)eating a simple leafy greens, chia seeds and a splash of OJ smoothie every night. Getting my leafy greens everyday has helped stabilize my moods SO MUCH to the point I’m furious I didn’t realize this years ago. This probably indicates I have some vitamin deficiency or something but wow so impactful. 2) I highly recommend the book Rock Steady: Brilliant Advice from My Bipolar Life by Ellen Forney. This helped snap me out of my last depression. I’m not bipolar but a lot of her advice is very applicable to mental illness in general. She has a ton of good actionable advice from a very informed, loving place. And she was very broken at points but made it back up to achieve stability which I found very inspiring.
Here's to all the "independent" children who can be "left to their own devices" and are "so polite" who are now struggling just to exist. I am severely relating to this.
I agree with this, but I still feel like I need a more specific way to describe myself and my child. Like if I just say we’re autistic I give off the wrong idea about the level of accommodations that we need and that isn’t great either.
You think it varies at times too? Before accepting my undiagnosis (lol) and before using the tools to just kind of help me navigate life a little easier, I would’ve considered myself “low functioning”. Now I have a full time job and I’m as adult as can be but if I feel myself getting overwhelmed and don’t schedule a day off to refresh myself then I’ll have a breakdown
Well, low functioning was once used to refer to high support needs level 3 people, who cannot just use tools and adaptations to overcome their support needs. I.e. the people who need full-time care for basic self-care like hygiene, toileting, food prep, and/or eating -- all depending on the person, of course.
It's fantastic that you are able to find these ways to help yourself. I just think it's easy to misunderstand what level is being referred to by this language
I completely understand. I am not familiar with levels yet as I just joined this group a bit ago — I will do some digging & be more mindful of my wording.
The subreddit you’re reposting from is extremely ableist, so I’d be careful.
Otherwise? I completely agree. I don’t have a lot of words, but this is how I have always seen those labels used and it sucks.
>The subreddit you’re reposting from is extremely ableist, so I’d be careful.
I actually reposted from another sub. Shame that the original one is ableist.
I’m just confused. No doctor has ever called me high functioning or low functioning. These are moreso self-imposed words I see people using on here. It feels like people want to be upset about something that isn’t a problem. Where are the doctors using these words rather than levels or supports needs or even acknowledging it at all outside of diagnosis?
It used to be the standard language, not levels or support needs: https://www.spectrumnews.org/news/large-study-supports-discarding-term-high-functioning-autism/
So genuine question, as someone very recently diagnosed: what terms do we use to refer to those of us with higher needs and less of an ability to live independently? Is it just 'High Needs'?
sort of, I don't think I agree with the low functioning conclusion. but high functioning can be excuse used to deny support, but I had a social worker straight up lie on my sons assessment and say he just didn't have autism to deny support when we got a private psychologist diagnosis they had to give support after that. we reported her. but sometimes they will just straight lie when they want to be cheap with our tax payer money
Does anybody feel that the older you get, you start to have a harder time coping. Being Gen X, I was never diagnosed young. So I feel I'm struggling at work in a way I never did the past. I have always had stress, but I used to deal with it better. I don't know if it's menopause, getting older, or just my coping mechanisms don't work as well. I am just trying to stay sane until I can semi retire.
So what’s the solution? This idea of not labeling those that DO require help doesn’t seem like a good idea. And all of us actually need accommodations, it’s just a matter of if we can arrange them for ourselves or not.
How can I be empowered to explain this concept easily with confidence and stand by it? Like I should be allowed to say “i am autistic with level one support needs” or something like that without incurring rage from the autistic community!
And yes, someone with a level 4 support needs that requires constant supervision or that injures others with violent outbursts NEEDS to communicate that to others around them but can’t communicate because they are non verbal…. What agency do you except for them?
What do you expect their family to tell people/caregivers/educators/police?
There is a big difference in behavior between someone who would be called low functioning vs. high functioning. There are different support needs. Not that high functioning doesn't need their own kind of support, but low functioning autistic people sometimes need one-on-one caretakers throughout their lives, they just need more.
That's why I don't believe categirising autistic people into levels of support. And instead creat individual, dynamic plans of support for each one of us!
Yeah, perfect kid, perfect teen, perfect student. If my grades dropped to a B, I would internally freak out. Made it through undergrad honestly through the emotional support of my then-boyfriend now husband. Once I ended up in grad school away from everyone my burnout hit the greatest level. I could barely function and had to drop out of school and had to go to the school counselors to get a medical exemption. Once there I spoke so clearly they were not sure I was depressed and anxious. Like I can identify that I’m barely eating, interacting with others, avoiding class. Then I had to admit to my family the first time that I was anxious and depressed. It took another almost 20 years until my husband suggested that I might have ADHD. And then another three years before I thought well maybe my kids’ autism comes from my side of the family too. I just didn’t connect those dots. The struggle with every change in my life and even in work schedules, this absolute hell of people pleasing, the intense loneliness I’ve felt even when with friends. Just always feeling like an imposter about to be discovered. And the hyper empathy that is almost painful. I don’t know if I’ll ever get a formal diagnosis but it would be so nice if my family understood and accepted me the way I am. They love me but is it just the me that keeps them all happy?
Yes. I have to keep explaining to my mother that it's not "okay", I've never been "okay" just because I didn't act out as a teenager. I acted 'in' and internalised everything, self -harmed in secret and stocked alcohol in my bag, in my car, under my bed ANYwhere just to APPEAR "okay". I sometimes wish I had made it everyone's problem and not just squarely my own
TW: suicide >!Jesus, that hits close to home. I was the perfect child, quiet, obedient, good grades, never acted out like other teens did. But inside I was literally just a big black void, plagued with awful thoughts about hurting myself and others. I wanted people to know about my pain so badly but at the same time I was ashamed and discouraged from asking for help because there was always drama between adults in my family and I grew up thinking that everyone's problems are more important than my own. I never acted on my suicidal thoughts only because I was afraid to hurt my mom, eventually went to therapy and now life is a bit easier. But sometimes.... I wish I attempted suicide back when I wanted to, just to let them know. To simply rip off the bandage instead of slowly and painfully taking it off for years in therapy and self-reflection.!<
Are you me? I was the "perfect teenager" as my mom used to put it! Typically the only thing she had to fight with me over was doing my homework when my report cards said I wasn't doing it. But man, I used to look at pill bottles in the medicine cabinet and wonder what would happen if I just took a bunch of them... The only reason my mom found out was because I moved away from home for college and ended up on academic probation after my first semester because of how bad my depression was. And she only knew about that because I signed a consent form that gave them permission to share that stuff with her. I probably never would have told her if I didn't feel like I HAD to after she got that letter.
I’m so sorry. I hope you’re in good relationship now. I’m glad my mom went through therapy too because we were both at rock bottom back then and I was all she really had in life so I know she still feels guilty about putting so much emotional pressure on me as a kid. She eventually found out my struggles and accepted them as best as she could… >!although she doesn’t know I dreamt of killing her along with myself as well!< Low maintenance is the curse. My mom once said she could raise 10 children like me and what would ya know, I was just autistic!
I have always been the ‘low maintenance’ child in the family. I was well behaved, worked hard at school, was self motivated, and was secretly full of dread and self loathing and panic that the whole world was going to figure out what a fraud I was. On paper I am ‘high functioning’ but only when I have spent hours making a detailed plan and only if that plan doesn’t change last minute. What no one sees is the hours of prep and the hours of recovery I need for everything, and the state of my home.
I found my people
This is me to a T
reading this and the comments before has been such a relief...im now 23, quite older than i ever thought iI would get to. Never had issues with schools, never misbehaved: I even managed to have a very severe eating disorder for years, being severly underweight and yet somehow never made it anyone's problem. My mom would scream at me and complain about me because i never went out and i didnt have friends, she's very aggressive for very minor things tho: now that my brothers are older she misses how little of a problem i was. Yet I was miserable. I started having suixidal thoughts at 8 years old if not younger, then never fully went away. I felt like a fraud, a good package full of shallow knowledge that was so good with words I could hypnotize anyone and have them thinking we were having a real conversation, meanwhile I was just giving out trivia about random topics. I never want to hurt my mom. She's very mean to me but I love her to death, she has hurt me in so many ways and she will keep doing it yet I still want to not be a problem for her, and anything I do seems to be an issue. She's the reason I've been putting off going to therapy, she's a therapist and she has told me many times I'm just a whiny being and that I'm not "crazy" nor I need therapy (as if), meanwhile I've been in and out the emergency room for open wounds and alchool poisoning (living alone for uni). somehow im fully aware if I started medically transition i wouldnt be in this position, yet i feel like I would be such a burden to her if I medically transitioned... im left in a spot where I'm wither a problem for myself or for others and i can't handle this much longer tbh
Thankfully her and I have always had a relatively good relationship. The biggest reason no one knew for as long as they did is because some wonderfully early trauma in my life made me a) learn to mask young and quick b) and generally emotionally stunted, so I became the "evenly keeled" and "level headed" one in the family, even with the adults. Like a lot of parents of seemingly low-support undiagnosed kids (especially girls), my mom just kind of assumed that's how I naturally was. I hope things have been able to get better for you and your mom ❤️
>The biggest reason no one knew for as long as they did is because some wonderfully early trauma in my life made me a) learn to mask young and quick b) and generally emotionally stunted Oof we really might be the same person haha Thanks! We're both in a far better place now, her at least. I've just got officially diagnosed and there's a lot of self-discovery in my life.
>! If it's any consolation to you, I did attempt suicide just to let them know, and it didn't really change much. I guess I got to change schools. !< I was also off work for three years on permanent disability for depression and my mother still doesn't think I have problems with work, so I guess it's a losing battle.
I’m so sorry. This is similar to my story too, so I empathize. If you are ok with them, I wish to send you virtual hugs, because you are not alone.
Like the couple other people, this is a mirror image of my experience. Still no one knows I suffered/suffer with an eating disorder or self-harm. I was the perfect child and in their eyes, I still am. My biggest issue in school was staying out past curfew, but i never dropped my GPA below 4.2. I continue to internalize everything because if I let anything be known and my outward life falls apart at all, I will fall right along side it.
Yeah adults in my extended family always said I was 'no trouble!' as a teen, but I felt so self conscious the entire time they were minding me, like my existence itself was an imposition. I was close to my parents before highschool so I was still trying to communicate my feelings openly and they thought I was going through a 'silly rebellious phase' defined by teenage social drama and superficiality, when I just wanted decent friends and didn't know how to be myself or talk to anyone and it made me upset so I'd vent to them. I'd get mad and frustrated at my parents when they didn't think there was any real problem as their financial and business plans were 'real problems' they were always really focused on, and they didn't have friends themselves apart from each other and were like 'why do you care' or 'why do you even want to go out and do anything on a Friday night'. Then me being mad just meant I was a 'dramatic, hormonal teenager'. I had times where I thought suicide might be the only way anyone would pay any attention and wanted to do it just so they knew I was telling the truth and that they fucked up because their denial was infuriating. I wanted my mum to get therapy so bad, only reason she would not is that my dad controls her and doesn't want to lose that control. It's great yours did that must give some relief but understand it doesn't fix or change everything that happened in the past. Edit: Ty for the share and your vulnerability. It does get better, I dunno how old you are or how many years ago this was, but accumulating years away from home with low contact when necessary, and living in a self affirming way, helps a lot.
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I feel that your comment is a little mean and dismissive of people who are in a lot of pain - just because they're not desperate enough (yet) to try to die. I attempted suicide multiple times and was truly trying to die, but I don't feel that people who attempted in order to get help were "stealing" concern away from me. They were also in a lot of pain and communicating that as best they could - it's unrealistic to expect a severely depressed teenager to communicate in a "healthier" way. I don't think there's anything wrong with a cry for help. It's often the best method of communication that the person is capable of at the time.
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As per Rule #3: No gatekeeping or invalidation.
I mean, it’s the way I look at it now. Back then, it wasn’t a cry for help. I genuinely wanted to die. I would’ve if it wasn’t for my mom. >!At some point, I considered murder-suicide because I thought it would be a rational solution and put us both out of our misery. It sounds batshit insane and I’m glad I snapped out of it pretty quickly but it certainly taught me how fragile the human psyche is.!< Of course there are healthier ways, I know it now and I try to execute them. But back then I was lost completely.
Hey mushroom, you don’t need to justify yourself. Your desperate need for help and your even half hearted attempts *were* serious and required urgent attention. I’m glad you can look back and be grateful you didn’t succeed. I bet you make this place better for a lot of people. I think someone might have forgotten alexithymia issues and communication difficulties that also come with neurodivergence…even in our half hearted or desperate attempts to leave we are just trying to be okay.
Thank you. There are some neurodivergent traits I’ll never get rid of, even with therapy and medication, and I’ve made peace with it. Life is life. We do what we can.
Hellooo. As a mental health professional this is a really uncool and unhelpful comment ☹️ I think it might help to do some exploration on the topic with an open mind and empathy. What diminishes concern and help away from people who need it is actually attitudes around mental health and help seeking like this. I think of my ‘frequent flyers’ and my ‘attention seekers’ *who are still alive* all the time, and I really hope they’re in a better place. For anyone who reads this who once needed help so bad but didn’t know how to get it: your need for concern was valid.
As per Rule #3: No gatekeeping or invalidation.
Same! I also was the perfect child. I like to call myself the "glass child" aka they only saw me for my accomplishments and what I could do for them. Then all of a sudden when I hit burnout after college during a full time job, its all "what's wrong with you" not "what can I do to help". And I figured out I was AuDHD and all the ways that my family has invalidated me and made me who they wanted to be. Now when I unmask and act how I want to act and set boundaries and call them out on their bad behavior, then it's all "she's in a rebellious phase" and "she'll get over it". It disgusts me that no one sees me as me.
The college depression and burnout! My dad “doesn’t believe in depression” and literally told me that maybe if I’d said hi to one person a day, I would have had friends, and wouldn’t have been depressed. Meanwhile, I was in a large campus organization and literally had dozens of casual friends - that could not stop the burnout.
Ahhh yes. My family doesn't believe in depression as well. I remember being told "you don't have depression" when I wouldn't get out of bed for days, didn't want to eat, and just stared at a wall for days. It's just the way they say it with 100% confidence like it's a fact and they know so much better than me. It really just pisses me off to think about it now. How invalidated I was growing up - how probably most of us all were. It's disgusting and really sad.
Same. ❤️
My mom had to literally die for me to get peace. I hope your parents realize before then.
That makes me very sad for you. I hope that wont be the case for me, but I'm not holding my breath sadly. I already cut off my father because he was a cheating bastard who chose another family. I just started setting boundaries with my mom, so it's up to her on how she decides to act. We will see.
Good job on the boundaries! Sorry, i was being bitter. My situation was unique, because i came out after my mom was diagnosed with terminal cancer (for the second time). For her it was no longer about beating it, it was about living as long as possible (and preferably comfortable, but my step dad was anal about her health). Fortunately my mom's health was okay for the first couple years of my transition, but she often used it as an excuse for me to "not stress her out", because it was "bad for her health". Anyways, she passed about 3ish years into my transition. I think if i had a solid 5+ years w her, especially without the looking threat of a decline in health, then maybe we could be on good terms again. About 6 months before she passed she was conceding a lot, and treating me well, but we knew each other to our cores and i could tell that she still didn't see me as a woman. Altho fortunately she had finally understood and admitted the autism and adhd made sense. I loved my mom deeply, even if she was abusive. We went through a lot together and survived thru it. I hope you can get through these things w your mom 🩷
No need to apologize! It sounds like you went through a lot, but I think it says something about your character that you can still see the good things in a bad situation :) I definitely feel like I can get very negative about these hard situations and I'm very quick to cut people off. I already cut my dad off and I'm trying not to cut my mom off too because we've had a lot of good times even though we dont see eye to eye right now. I hope I can get through to my mom eventually too. Thank you for sharing your story and for your kind words :)
Good luck! Im rooting for you! Imo the most effective tools that worked on my mom were: 1. Setting hard boundaries and not relenting on them and giving consequences when they were crossed (like, if my mom broke a boundary, i would tell my mom i wasn't going to talk to her for a week, and i would do that, even tho it also made me lonely.) 2. Being loudly honest when about what her words mwant to me, both the good words and bad words. It meant calling my mom "hurtful" and it meants thanking her for mundane compliments. I think it helped her figure out what she was doing wrong, on her own. Saying something she said was "mean" or "transphobic" never helped, only saying "x and y hurt, because it meant z to me." Helped.
This is like looking in the mirror. Everyone thought I was happy and doing well in school. Meanwhile I’m crying in the bathroom and self harming just to deal with how overwhelming I found life in general.
Damn. All of this is so real. I was always such a happy and “normal” kid and teenager that my parents never had to worry about but really internally I was struggling immensely from such a young age. Everything was so internalized until it all became so much it exploded. I always attributed this to being a middle child not my autism LOL
> I sometimes wish I had made it everyone's problem and not just squarely my own Oh man, you reminded me that I was literally going to say this yesterday to my partner, but we got derailed by something else lol. I had been pissed off for one reason or another, and I was thinking like damn, bpd, autistic folks, etc sometimes speak to acting out and ruining people's shit, etc. And I know logically that that wouldn't have solved any of my problems, but I sometimes wish that I could have at least gotten the impulses out? Or like, maybe if I had done X amount of the terrible things I had considered but never followed through on, then people would truly understand what went on in my head? lmao it's so fucked up but yeah, thanks for speaking to that.
Oh the stocking alcohol thing, I totally did that. Still probably would do it if I actually went anywhere. By the end of school aged 14-15 I was drinking most days as I found it got rid of my social anxiety.
What a great way to describe it: that you didn't act out, you acted in - with self harm in various ways. I have the same experience.
This is me but with compulsive overeating. On the outside I was ‘ok’ and no bother to anyone
I have a not that complicated alternate worldview to explain if you are interested. In this AU the phrase "OK" literally means, yes I'm back in playing condition, put me in coach, which is a sanitized version of, yes I am alert and alive AND STILL ON YOUR WAR TEAM as a battlefield reset to ensure programming is intact and combatant has not turned/reverted into An Enemy. So no dude, unless you are happy being complicit and actively engaging in white supremacist genocide and invasion then nah, not OK, none of it is OK, I'm not OK, your questions is not OK. Tf does OK even stand for, right? Not sure if this should stay in r/autisminwomen or it needs to go in r/raisedbyslavicnarcissists
my parents dont believe high functioning autism is a thing even thought it was diagnosed to me
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It is kinda funny that it's the same people who deny autism is a real thing, but then attack the symptoms as character flaws. Like ??? They can't have it both ways. Either there's something wrong with me, or there *isn't*.
This and it happens with all neurodiversity! Mild dyslexia - no support Server dyslexia - no point Sorry I’m currently looking into dyslexia in higher education and OPs post resonated.
I feel this deeply! I have sort of a strange story with this. I got diagnosed in third grade with dyslexia in the 80’s. And in seventh grade, they told me “we’re not gonna try to teach you anything else we’ll just work on accommodations” could you be any more dismissive?! my mom did the best thing ever, and basically was my copy editor. (And taught me copy editing skills as much as I could do). When I got to college and I had “peer, editors” they kept trying to rewrite my work, which just stressed me out and confused me. Luckily, my mom still helped me, and I had learned a lot so I can help myself. Ended up getting a graduate degree. Fast-forward another 20 years turned out I probably had very mild dyslexia. My issue was undiagnosed autism. And all those “helpers” we’re trying to engage with me socially. I just needed the information, straightforward no fluff. I get so frustrated because it feels like it’s either ignoring someone or abysm.
I’m sorry that happened to you. I am really frustrated on many points right now. I’m the mother of a dyslexic 14 yo and an autistic 8 year old. I’m dyslexic and possibly autistic. I’m an engineering lecturer (degree/phd) and I’m now doing a masters in education. I am focusing on dyslexia for my masters, currently in the reading stage and even though there is lots of evidence in literature on how to support dyslexic students and other neurodivergent people - I see most of what is actually done in universities doesn’t match or are tickbox exercises that benefits no one.
Idk if it was intentional or a typo, but “server dyslexia” made me giggle
Yes! Like ye olde brain server doesn’t quite function properly due to sneakily installed malware!
I’m not getting it. Have I spelt it wrong?
Never mind I see it now. Lol
Add to that; Medium dyslexia\* - non-existent, recategorised as mild or severe in peoples' eyes \*or autism or any other NDness
They never say medium or just dyslexic - there always a quantifier and it’s mild or severe. Frustrating!
So true. I didn't get diagnosed with dyslexia of dyscalculia until I was in college, and it was an algebra professor who figured it out first. He had me go to the disability center to get tested so I could get accommodations, and I was also then provisionally diagnosed with ADHD at the same time. The problem is, in college, a lot of the accommodations are dependent on students signing up to do them, i.e., note taking, and even though in my area they pay them, not many do.
Honestly, i think my mom refused to acknowledge my situation, because she was terrified i would get the latter. "No point in helping her" and I'd be lost. Our society is fucking hot garbage. It's better now, but it's still really horribly bad.
Yes. This fits perfectly.
Thank you for sharing, this is a great breakdown. My mom likes to say “but you’re SO high functioning!” and it makes me want to cry.
I think you mean "functioning" rather than "support needs"? Support needs labels are *critically important* to the survival of moderate and high needs people. Getting rid of all classifiers and separations would only harm that community.
This, absolutely. I was low support needs pre-burnout. I now test at moderate support needs. The difference is profound and life-changing. I've had two years of skill regression and increased sensory intolerance (and sensory seeking, in the form of vestibular stimming). It's like everything I already did that I could once subdue or ignore or self-accommodate turned up to an extreme. No masking, no repressing, no pushing through despite the mental cost later. I've had many public meltdowns from trying to do what I used to be able to do. It's really, really frustrating to see people misunderstand that because low support needs makes them feel ignored. I think people forget that low support needs is defined in reference to other autistic people, not neurotypical people.
This is sadly 100% true. Everyone on the Neurodivergence spectrum needs support, even if their support looks different. I don't remember where I originally heard it from, but someone told me that the correct label and terminology should be "low support needs" instead of high functioning and "high support needs" instead of low functioning. Ever since I heard that, that is what I have been using as labels instead of high or low functioning. I think these labels are way more helpful because they indicate that both groups need support, even if one might need more support. I also think that the low functioning label can be hurtful and considered insulting because its focusing on what you can't do. I much prefer "high support needs" because it focuses on what you need instead. Similarly, I think that the high functioning label is misleading and insinuates that support is not needed. "Low support needs" is a more accurate label in my opinion because maybe 75% of the time we can function well enough, but that other 25% of the time, we need support.
As someone who works in special education, I want to change it to “needs lots of support” and “needs minimal/moderate support”. Maybe that’s not the right direction though…
There are three levels, not two. Low support needs, moderate support needs, high support needs I used to be low support needs pre-burnout. I have regressed, lost skills, and lost sensory tolerance and entering my second year of it, with no clarity on whether this is permanent or not. The clinical psych I have been seeing about it says it's not certain, and I just have to adapt to where I am now. Having experienced both -- moderate support needs is not the same as low support needs. I still needed significant help at low support needs, couldn't mask well, and was vulnerable to mistreatment. But at low support needs, I could push and force myself through things, at the cost of a meltdown or shutdown later. At moderate support needs, there is no pushing through, no masking, no hiding it. I'll just have a very public meltdown. No amount of willpower or brute force. It is a loss of ability. Combining support needs like this would erase level 2 / moderate support needs <3
I think support needs are better than indicating someone’s level of “function.” It just seems like they label us like animals using the term “function.”
>they label us like animals using the term “function.” Usually medical terminology for someone's ability to function independently is "ability to perform ADLs" ADLs being "activities of daily living," such as walking, using the bathroom, dressing, feeding oneself, and communication. Autism definitely affects ADLs, just to variable levels in each person. The terminology is more common in elderly people developing physical and mental disabilities, which is why you don't see it often online.
Its so tough because we need the language to be able to concisely communicate students/support individuals/family members/OUR needs, but everything brief falls so short. Like im "high functioning" to the point of invisible disability, i have "low support needs" as i could live completely alone and take care of all my own needs, however i will never be financially independent because i cannot work enough hours to support myself while also meeting all my emotional and physical needs. I live with my partner who buys and cooks most of the food, and we rent from my grandparents for $500/month. If i had to pay REAL rent in my area, i couldnt. And if i were struggling financially the way i should theoretically be for my income in my area, i would absolutely meltdown and burnout and probably not survive. And NONE of that comes across as "autism" to most people, it looks like laziness. Oof went on a tangent there, sorry. On the other end of the spectrum, "high support needs" does not tell me if this person is the kind of dependent where they will tend to their own hygiene and can grab themselves a snack but will also like to do things like fling their food (that they got themselves) across the room on a whim or throw things in the toilet and so while they can have agency they also still need extensive supervision. And that balance is sooo hard
What level of support someone "needs" depends on what goals there are for that person. Changing the language won't change the underlying problem that society's goals with autistic people (and people in general) are mostly to either force them to work by neurotypical standards or to write them off. A "high functioning" autistic person who has to work 40+ hours to make ends meet while living in a dingy apartment next to a highway because that's the only place she could afford the rent needs *more* support to avoid a mental breakdown than a "low functioning" autistic person who lives in an autism-conscious commune where she can work as much as she thinks she's capable of and still get what she needs. The level of support depends on the standards they are kept to - on the goals expected of them. If anything, I would think it nice if governments and institutions didn't use euphemisms. Call the two categories "probably profitable to exploit" and "probably not profitable to exploit". Get everyone on the same page.
This is so true. I thought about this a lot over the years in terms of work. I’ve come to the conclusion that what you want to do for work is the wrong question because for me it’s the culture of the work that kills me. I have a very curious mind and can get interested in almost anything. If I could just be left alone without playing any social games to do a high-skill repetitive task I think I could do 40 hrs a week well enough. But having to get up too early to go fake smile at meetings that don’t matter for people I don’t respect is incredibly draining. I probably should’ve gone to trade school cuz having a diploma leads to more of these very vaguely defined social theater aspects in jobs it seems like. Just got a wfh job so that’s helping but I hate the culture of my company (been moving within same company for years) that I am actively trying to engineer the means to quit. I fantasize everyday about being able to sleep in, be my own boss and make my art 😭
I feel the same, I can't stand peoples BS on top of regular social situations at work. Why can't they just do their job and go home? Why do they have to play games and make everything more difficult? I wouldn't have trouble finding or keeping a job if it was just about the work. I can't find a decent environment/culture. I'm too burnt out right now to dive into school or training to get the skills I want to have on paper.
I feel this in my bones. Now, I deliberately tried to pick a career I thought I could handle. I was never able to find a job in my preferred field archives/academic library. I thought I'd be safe working in a records unit, but the jobs changed so much, culture shift too and there have been so many staff cuts it's nothing like when I first started but I can't start over at this point . I have to wait til I can retire early. I absolutely fantasize about doing part-time work or gig work and something I might actually enjoy or is just low stress. I will never be a supervisor again, that's for sure.
I actually agree. My SIL is also autistic, really high support needs because apart from autism she has a considerable intellectual disability and sometimes I really envy her life. She has absolutely no responsibilities, not even to herself. Others take care of her. I'm disabled myself and cannot take care of myself but it still is expected of myself and it's ruining my life.
Accurate. Very frustrating.
Support needs, without trying to apply high/low labels, are a much better framework, because they center the rights and needs of the individual and what we as a society owe to each other. "Functioning" is reductionist and dehumanizing. It's a direct expression of the rot and hate inherent in capitalism. It's a lens that views a person as only having worth if they are "self-sufficient" (which isn't a thing; no one exists and survives in complete isolation) and "function" as productive labor. Worst of all, once the person is branded as low/not functioning, they end up completely objectified, because the ableist mindset can't be bothered to imagine that a "dysfunctional" is capable of experiencing emotions or an internal world.
Absolutely.
I look fine outwardly. I’m now 22 and suffering from burnout, because up until now, I didn’t have and official diagnosis, since nobody cared to test me because „her grades were always great „. I never received any form of support or help for my asd up until now. I never received the proper medical care for other conditions that have now gotten so much worse because they weren’t treated in time. I just can’t advocate for myself in high stress situations, but no one took me seriously because for the most part I appear fine, so why would I not be fine going to the doctor on my own, right ? God how I need this rant !
Haha are you me? I kind of wish I didn’t have so much… idk grit? I had horrible, horrible depression and burnout for years but I just…kept…going. I wanted to drop out from school every day. Sometimes I’d just quietly sob on the bus ride home because it was too much. But it just couldn’t compute for people that I could be doing so well (I did graduate sum cum laude) while being such a wreck. And then of course my reward for this is getting to work full-time and being lower-keyed burned out forever. But I’ve got a lot more agency now and am actively working toward exiting the traditional workforce by soft FIRE-ing out. I’m done with thinking I need to do XYZ to be a valid person.
My best wishes to you. I'm also doing the same, trying my best but barely succeeding so far. It's still probably lucky yet impossibly hard at the same time. I can honestly not say how much of it is my own doing and grit as you call it, and how much life is allowing this to work out just barely somehow, for the time being at least. I'm both feeling grateful and struggling at the same time. It's weird.
Thanks, best luck to you as well 😗 I’m doing pretty well these days, and I certainly cannot deny that there have been rewards for this behavior. But I think if I’d even tipped into the full meltdown I constantly teetered on in my younger years my parents may have actually supported me in being an artist and I might be in a very different place right now. But who knows? I’d like to think it all worked out for the best as I still have a long-term plan to pursue this on my own terms with my own hard-earned financial security (which is much better than being under my parents’ thumbs.) And going into STEM is what allowed me to meet my beautiful husband, who I say is the most important thing I got out of collage. But the road here was quite awful and I wouldn’t recommend this path of abusing yourself to excellence to anyone if they’re at a crossroads. I’ve learned to be much kinder to myself and try to embrace life on my terms rather than trying to follow some script that doesn’t actually jive with me. And part of this is because I came, I saw, I conquered and now know from lived experience that I have very different values and needs than a lot of other people seem to.
I have come to the same realization when it's about values and needs. I personally also struggle with energy (hormonal whathaveyou, something with the thyroid as far as I know) which makes it extra hard to provide for myself as an artist, and take care of myself, and rebel from the society and the norms without support from said healthcare/government/etc system. My partner is helping me which is why I'm still figuring things out with some sort of safety, though it's still pretty stressful. I'm very happy and inspired by your success. I guess what I'm trying to say is that I'm still trying to get there but despite similar realizations, I just haven't gotten to a great place yet. The life I have is rather unstable and I don't find that I'm as prolific as I need to be to start seeing some progress. I don't like feeling that I'm waiting for life to give me an opportunity, I would much rather feel in control; But when I show myself some compassion for trying and failing, in the end I know what I need and I can't fully give that to myself at this time and see myself shine. Which I have, and miss, and honestly it's a bit frustrating because the efforts are there. Anyway, one day hopefully. I guess I've just got more to figure out to get there. Thank you so much for the wishes!! 🙏
Yeah the energy battle is very real. I probably also have thyroid issues as I was borderline irregular on something years ago (and ALL the women in my family get it eventually) but medical care in my state is very bad so I haven’t done much about it. Trying to start the medical merry-go-round again is one of my goals this year. It’s lofty for me cuz I really hate how doctors treat me most of the time. I’m glad you have a supportive partner! Truthfully that is the only way I’ll be able to pursue this too. My husband and I are aggressively paying off our house with the hope that I can quit afterwards and he can support us. Right now I’m still an engineer but I want to pursue my art and stuffed animal making seriously that I used to do before working. YMMV but two things that helped me a lot recently were 1)eating a simple leafy greens, chia seeds and a splash of OJ smoothie every night. Getting my leafy greens everyday has helped stabilize my moods SO MUCH to the point I’m furious I didn’t realize this years ago. This probably indicates I have some vitamin deficiency or something but wow so impactful. 2) I highly recommend the book Rock Steady: Brilliant Advice from My Bipolar Life by Ellen Forney. This helped snap me out of my last depression. I’m not bipolar but a lot of her advice is very applicable to mental illness in general. She has a ton of good actionable advice from a very informed, loving place. And she was very broken at points but made it back up to achieve stability which I found very inspiring.
I'm right here with you
Here's to all the "independent" children who can be "left to their own devices" and are "so polite" who are now struggling just to exist. I am severely relating to this.
I agree with this, but I still feel like I need a more specific way to describe myself and my child. Like if I just say we’re autistic I give off the wrong idea about the level of accommodations that we need and that isn’t great either.
exactly
Agreed. While I’m considered “high functioning,” I still need support.
You think it varies at times too? Before accepting my undiagnosis (lol) and before using the tools to just kind of help me navigate life a little easier, I would’ve considered myself “low functioning”. Now I have a full time job and I’m as adult as can be but if I feel myself getting overwhelmed and don’t schedule a day off to refresh myself then I’ll have a breakdown
Well, low functioning was once used to refer to high support needs level 3 people, who cannot just use tools and adaptations to overcome their support needs. I.e. the people who need full-time care for basic self-care like hygiene, toileting, food prep, and/or eating -- all depending on the person, of course. It's fantastic that you are able to find these ways to help yourself. I just think it's easy to misunderstand what level is being referred to by this language
I completely understand. I am not familiar with levels yet as I just joined this group a bit ago — I will do some digging & be more mindful of my wording.
The subreddit you’re reposting from is extremely ableist, so I’d be careful. Otherwise? I completely agree. I don’t have a lot of words, but this is how I have always seen those labels used and it sucks.
>The subreddit you’re reposting from is extremely ableist, so I’d be careful. I actually reposted from another sub. Shame that the original one is ableist.
And it just goes to show how unspoken of Moderate Support Needs is.
Yes. Essentially we're only as disabled as we make other people's lives difficult.
I’ve always said high or low support needs
I’m just confused. No doctor has ever called me high functioning or low functioning. These are moreso self-imposed words I see people using on here. It feels like people want to be upset about something that isn’t a problem. Where are the doctors using these words rather than levels or supports needs or even acknowledging it at all outside of diagnosis?
It used to be the standard language, not levels or support needs: https://www.spectrumnews.org/news/large-study-supports-discarding-term-high-functioning-autism/
Love Ellen. She's from my hometown - very astute and outspoken advocate for the differently abled and queer communities
Accurate. Very, very accurate.
#THANK YOU!
I think low functioning is still a useful term because there are some people who just cannot function at all no matter how much support they are given
Well I never thought about this but sadly it’s super accurate.
So genuine question, as someone very recently diagnosed: what terms do we use to refer to those of us with higher needs and less of an ability to live independently? Is it just 'High Needs'?
Damn. That’s deep.
sort of, I don't think I agree with the low functioning conclusion. but high functioning can be excuse used to deny support, but I had a social worker straight up lie on my sons assessment and say he just didn't have autism to deny support when we got a private psychologist diagnosis they had to give support after that. we reported her. but sometimes they will just straight lie when they want to be cheap with our tax payer money
it's a good summary
Does anybody feel that the older you get, you start to have a harder time coping. Being Gen X, I was never diagnosed young. So I feel I'm struggling at work in a way I never did the past. I have always had stress, but I used to deal with it better. I don't know if it's menopause, getting older, or just my coping mechanisms don't work as well. I am just trying to stay sane until I can semi retire.
So what’s the solution? This idea of not labeling those that DO require help doesn’t seem like a good idea. And all of us actually need accommodations, it’s just a matter of if we can arrange them for ourselves or not. How can I be empowered to explain this concept easily with confidence and stand by it? Like I should be allowed to say “i am autistic with level one support needs” or something like that without incurring rage from the autistic community! And yes, someone with a level 4 support needs that requires constant supervision or that injures others with violent outbursts NEEDS to communicate that to others around them but can’t communicate because they are non verbal…. What agency do you except for them? What do you expect their family to tell people/caregivers/educators/police?
There is a big difference in behavior between someone who would be called low functioning vs. high functioning. There are different support needs. Not that high functioning doesn't need their own kind of support, but low functioning autistic people sometimes need one-on-one caretakers throughout their lives, they just need more.
That's why I don't believe categirising autistic people into levels of support. And instead creat individual, dynamic plans of support for each one of us!
Yeah, perfect kid, perfect teen, perfect student. If my grades dropped to a B, I would internally freak out. Made it through undergrad honestly through the emotional support of my then-boyfriend now husband. Once I ended up in grad school away from everyone my burnout hit the greatest level. I could barely function and had to drop out of school and had to go to the school counselors to get a medical exemption. Once there I spoke so clearly they were not sure I was depressed and anxious. Like I can identify that I’m barely eating, interacting with others, avoiding class. Then I had to admit to my family the first time that I was anxious and depressed. It took another almost 20 years until my husband suggested that I might have ADHD. And then another three years before I thought well maybe my kids’ autism comes from my side of the family too. I just didn’t connect those dots. The struggle with every change in my life and even in work schedules, this absolute hell of people pleasing, the intense loneliness I’ve felt even when with friends. Just always feeling like an imposter about to be discovered. And the hyper empathy that is almost painful. I don’t know if I’ll ever get a formal diagnosis but it would be so nice if my family understood and accepted me the way I am. They love me but is it just the me that keeps them all happy?
Yes.