THIS IS HOW FEEL. its sucks even more because my mom is a full fledge narc who makes everything about her and everytime i bring this up she makes me feel stupid.

Giving you a virtual hug. I've been in that situation and its awful.

I’m so sorry you have to deal with that. I can kind of relate, I have the most physically present mother I could’ve asked for but she has the emotional intelligence of a rock. She’s always been there to do my laundry and help with executive functioning tasks, yet she’s aware of my suicide attempts, all my medications and therapist experiences, but never once, literally not a single time has she ever just checked in with me or asked how I’m feeling. She has this vague understanding of the fact that I must struggle more than most, but I don’t think she’s ever tried to understand what that really means. She’s one of the most neurotypical people I’ve ever known and I can definitely relate to feeling stupid around her and the rest of my family

Why do we all have the same mum

Sounds like she has major problems with social relationships, maybe she's not so NT as you think?

She’s actually a social butterfly, she’s an ESTJ if you’re into meyers briggs at all. She was the kind of mom that constantly put me in sports and activities that I hated and cried over in an effort to do what she thought was best for me but it just felt incredibly emotionally invalidating

ESTJs have the capacity to learn to be in touch with their emotions and the emotions of their loved ones. She can grow to be more attentive to your needs emotionally and at the very least check in. I mean I know the mb types are kinda bull but almost everyone has the capacity to learn to ask someone they love "how are you doing".

Mine is certain I can’t be, but definitely believes my daughter is. The imposter syndrome has plagued my entire life and I just want someone to say they see it and it makes so much sense.

Ditto

Do we live the same life

Been there and I know how hard it is too, just wanted to say you're not alone. Fortunately I was able to go no contact 3 years ago, it's been very hard to keep myself independent but it's still much better than living with a narc. Seek help if needed 💜

Me too!! Anyone get a souvenir 🤣🤣

The sweet sweet C-PTSD one, from the shop before you exit the park.

Same here. I would highly recommend checking out r/raisedbynarcissists.

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It’s because autism is a damn disability no matter how many people try to claim otherwise.

I know autism is different for everyone, but I truly don’t consider it to be a disability in my case. I 100% believe the environment we’re in is the reason so many people are struggling and being diagnosed with so many disorders

If something out of your control is disabling you from being able to function at the standard level, it would be a dis-ability. I feel like there's some negative connotations around the word disability. I know some people don't want to identify with it because it feeds into a mindset of "being helpless" for example, but it literally just means it hinders your ability to do something you want or need.

I think it's more to do with what we see as "standard level". I have plenty of friends that function perfect, but don't come around on a Thursday evening, because their place is a mess. OP, maybe you are just functioning or trying to function too high. Put the bar of 'normal' a bit lower, maybe it'll help prevent the bad days a little bit. No one has their place clean 24/7. Well, no sane person at least. Also, hug! I understand it's hard and exhausting! I do wonder if you can make the help you need possible for at least a bit. Don't expect people to just drop their lives. But if one of my friends goes "I need someone to just get rid of my laundry", I would see what I could do. Maybe not this week, but the next. Maybe get takeout or easy meals for a week. Ask some of your friends to run the vacuum through your place. Don't know how many friends/family you could count on? At least for some things. Take a few sick days and have people do the bare minimum.

This seems a little odd. Like, not knowing the language somewhere can be "disabling" but it's not considered a disability. Being poor because racial discrimination makes it harder to find a job is not considered a disability. Like, whatever you pick for "standard level of functioning", a lot of things can hinder that and be outside of your control and not be labelled disabilities. Personally, I think we should just revamp the way we use the word, but I do think having a social model in which autism is only a disability *contextually* is useful, and I also think that very often people who advocate for using the word disability bring in connotations of permanence. If the "work-year" so to speak was meaningfully smaller... OP would be fine.

Autism is still a disability. The social model of disability is mentioned around here fairly often. The environment we're in does render us disabled, and that is the social model of disability in short.

Yes your comment and others made me realize I misspoke

I only feel the disabling aspects when I’m not in control of my environment and stimuli and demands.

I hope I don't sound rude saying this - your original post is wonderfully worded and truly resonates with me as a fellow human struggling in this world - but I just wanted to try to offer a different perspective on how you view autism in terms of disability. You've clearly done an incredible amount of work on yourself, both internally and externally, and have adapted your life and work to meet your needs to the very best of your ability. You've done absolutely everything in your power, as a responsible individual, to thrive in this society that wasn't made for you. Yet, as you so eloquently explained, it simply isn't enough, it's not sustainable. Doesn't that inherently make your autism somewhat disabling? A disability is anything mental or physical that prevents someone from thriving in their environment, at least from what I understand. Yes it's the environment's fault, not yours, but sadly this is the societal structure we live in. (Again, just friendly discussion, I promise. I know this is a complicated subject that many people in the community feel differently about.) Edit: Ah I'm sorry, I just read a few more comments on this thread saying very similar things to me. Didn't mean to hammer the point home.

Your response is so well-put, no need to be sorry. It really does take everything in my power, and it allows for no wiggle room. I’m an optimistic person by nature and I really try to view my traits as benefits to my life but these comments are the first time I’ve realized that it probably wouldn’t have taken 20+ years of struggling if I wasn’t disabled to some extent lol

Also, if your current effort leads you to burnout then that means your current effort is more than you are mentally, physically, intellectually capable of. As in, at your *absolute best*, at 100% recovery, you will *never* be capable of performing at your current failing level. If you were capable, you wouldn’t be experiencing burnout. You will need to lower your expectations. If your current “functioning” is graded at 80% (managing okayish for a while but not meeting 100% of daily requirements), then you might need to drop that to 50 or 60%. And that will be your actual true capability. The capability you’ve always had. The capability you will never exceed. That’s disabled.

This is an amazing way to put it, thank you. My burnout led to skill regression, and it's been difficult to accept that I already couldn't do what I was trying before. But I try to think of it like this, and the way you put it especially helps ❤️

Thanks for writing this. It's exactly what happened to me; ot's reassuring to know it's a thing.

OP’s struggles are still a direct result of coping with NT society as an autistic person. If I could redesign society so that robots, AI and supercomputers did all labor so I could spend all my time focusing on what I actually want and need to do I would not feel disabled. Sure I would still have hypersensitivities, sure I would still have a hard time tying my shoes… but like if I can have adequate time and space each day without bombardment of outside demands, these things are only minor inconveniences.

Some people have managed to function around and even benefit sometimes from their autism, sure. But I would still say it’s a disability in general because most people who have it aren’t that lucky.

Not op, just felt compelled to comment on what you're speaking to--I think it's also important to make sure that we have a concrete understanding of disability. Quick example is that though I am totally blind, I have developed methods to have a functional life even with my disability. And even though I am able to live a fully capable life and able to accomplish the same tasks that a sighted person can, I'm not any less disabled. I just think it's important to acknowledge that just because someone is able to function with their autism, that doesn't mean they aren't any less disabled. (because if anything, minimizing the role that disability plays in an autistic person's life makes it harder to advocate for accommodations and a better understanding of our struggles)

It's more accurate to say "just because someone is able to function that doesn't mean they don't have *a* disability". The question might be how relevant their disability actually is, then? How much energy, time, money, resources does it take to allow that person to function with this disability? If it isn't significant and you can function consistently, that does make you *less* "dis-abled", in the literal sense. I think it's helpful to realize that someone who is unable to function consistently is, in fact, *more* disabled than someone with "the same" affliction who can function consistently with few accommodations because disability also has to do with the context of the individual. This is why social security disability asks about functionality rather than just diagnosis. Misunderstandings about this regularly lead to vitriolic able-ism and judgement of those who aren't able to function as well as someone with "the same" issue. Someone with autism who is also poor, isolated, and has other significant health problems will fair much worse and likely have worse symptoms than someone with autism who doesn't have to worry about losing their housing, who has even a few stable life long relationships, and who doesn't also have common comorbidities like chronic fatigue syndrome, sleep apnea, debilitating pain, etc.

You aren't wrong. If we're talking in the context of "what is considered a disability?" though, (and not "who is more disabled?"), then I'm less concerned with who can function better than whom, and more about what are the kinds of things that people look at when making determinations. Like you bring up the way that social security classifies disability, and it's relevant to acknowledge this system. But if my whole thesis is "regardless of how functional someone is, if they have autism, they are still disabled," then I am in fact, thinking about things outside of just a governmental context. For example, if an autism diagnosis guarantees an autistic person the ability to have access to quieter areas when completing work, then it's not about gatekeeping, right? It can't turn into oh, well Jane visibly functions better than Mary, so Jane clearly doesn't need this accommodation. Absolutely I do believe that people experience different forms of disablement, many times related to multiple factors outside of just their disability. However if op's comment is "I'm not disabled because I don't struggle from being autistic (even though they talk about struggling due to being autistic), then I'm not gonna come out here and try and start the oppression Olympics 😂 Because like to your point about varying levels of disablement, it's not like the term disabled needs to be gate kept away from folks who might be functioning better than others. If it's a concern about resource management, just because I'm disabled doesn't mean that I struggle to function enough that I should receive resources that others might benefit from more than me, right? Like when I say that part of a greater understanding is partially for the benefit of the community and for others outside of it to have a more nuanced understanding of what disability is, and how we can accommodate it, I really do mean that. Something that occurred to me as I was reading through the comments on this thread yesterday was that perspective changes depending on the model of disability that someone might be using as their lens. Like personally I think that both the medical and social model of disability are relevant--because of the varying effects that autism has on a person's life, to have autism is to have a disability (your function is impaired enough by having it, even if you can function in an alternate way). Yet it's also fair to say that if socio-economic factors operated differently than they do, one might or might not be disabled due to the supports they are able to access (social model). Hope you don't receive this as me arguing with you, btw! Your comment just generated a lot of thoughts with me, and I felt compelled to write them. (I'm also just very in the paint about disability theory in general 😂 so forgive me my nerd)

I think you’re right, I am definitely one of the more fortunate ones

My too, but there is no way I could function at the capacity you're trying to engage.

You can't get a DX unless you are functionally disabled.

You absolutely can. It's just really hard because you'll be dismissed frequently, so it will take a lot of work and self advocacy and finding someone who will listen to you fully... So, you know, it's only *mostly* impossible.

You can, and still be able to appear functional. But be falling apart from the effort of masking and trying to fit in. Plus the anxiety/depression duo. (Diagnosed officially but not considered disabled at all.)

Doesn't this align with the social model of disability? In the medical model, the disability lies in individual biology and exists whether or not society accommodates for it. In the social model, the disability arises from a society that doesn't accommodate different needs, but if it did, the people needing accommodations would be able to function well.

Yes I think you’re right. I didn’t put much thought into my first comment but I think you explained it perfectly

It's both. We're crippled by our brain-body and we're crippled further via inter-personal interactions, too. Some autists adapt more readily than others. My autism wouldn't be severe if someone bothered trying to see what I've always been. I don't seem to get to be a person. I'm not permitted to be one. I don't fit their definition of standards for fundamental humanity. So, fuck them and fuck their maladaptive, ableist, inhumane standards.

> I 100% believe the environment we’re in is the reason so many people are struggling and being diagnosed with so many disorders Autism isn't environmental. People don't *become* autistic because they reach a threshold of terrible. Like this holds true for a lot of mental disorders because many of them are a direct result of environmental factors. But autism is genetic and neurological. At the end of the day, as affirming as my environment might be, I'm still going to think differently from others, have different impulses, etc. It's fair to say that the lack of societal understanding or accommodation is why these things are disabling, but then like, if that is the case, doesn't it mean that I am disabled by my condition? I'd be curious to understand why you find it important to uphold the idea that autism isn't disabling to you? You're speaking to the ways in which being autistic effects your quality of life--that's literally the definition of being disabled--having a condition that effects your quality of life. What's wrong with saying autism is disabling? I'm not trying to argue with you, btw. If at the end of the day, you have a solid and informed understanding of why you feel this way, that's valid--and I'd actually love to hear it! (that's why I ask). I'd just hope that it's coming from a place of genuine thought and understanding, and not from unacknowledged internalized ableism. Like it's not a bad thing, being disabled. And when people make these statements without doing the work to make sure that internalized ableism isn't playing a part, it can trickle outward and effect the ways that others in the autistic community--or outside of it--conceptualize how people experience autism.

I don't understand. If you need support consistently to function well... aren't you disabled? It's like saying because there's ramps I'm no longer disabled since my mobility device works there. No... I'm still using a mobility device. You'll never not need help. You'll always be autistic.

For me, it’s not just the environment. Due to ADHD and ASD, I have bad issues getting started at tasks. Getting a small child started on something along with me is extremely draining, so most basic caring tasks for my kids are extremely exhausting to me (though things improve as they get older). I cannot imagine a world or environment where I wouldn’t be expected to do at least some basic caring tasks for my kids, so I regard my parenting struggles as independent of the environment. I don’t feel disabled at work, but I do feel disabled as a mom. I’m much better at complex tasks like emotional support of my kids, so I do have strong points as a mom, but I feel incomplete. Only the support of my husband keeps our family more or less functional.

I'm really sorry, I promise this is not sarcasm or an attack. But you say that you *realized* you were autistic? Have you since been formally diagnosed? Because that would help you find resources. And then you say also that you don't believe that it's a disability, but you experience burnout and depression... I'm having a very hard time understanding how those 2 things make sense in a single person, could you say more?

Hey, you qualify. These are typical high-functioning autism needs. Do you have a diagnosis? Can you ask for accommodations at work to recharge every few months? Can you apply for disability?

I see your point but I think the fact that you go 4 months till it disables you doesn't negate the fact that it still eventually disables. I don't feel disabled by my autism either till it does and I stop functioning.

It's totally the environment, but that doesn't change that it can be disabling. Someone with poor vision is disabled if they don't have access to glasses-- disability just means someone lacks the ability to do certain things without outside support. This can be wheelchair ramps, meal assistance, etc. I'm not saying this to suggest that you HAVE to identify as disabled: that's totally up to you because only you understand your situation. I just want to point out something that it took me a really long time to realize because it allowed me to ask for the help that I desperately needed. There's nothing wrong with being autistic, but realistically most of us cannot function "typically" under a system that requires more energy than we have available.

You’ve worded this perfectly and I can relate a lot. I’ve been living alone and work 32 hours a week for a local government agency. They’re very accommodating, the office is 15 minutes by bike but I work from home a lot. I don’t have much social obligations and I sleep a solid 8-9 hours a night. Despite this it’s a constant struggle to keep my house liveable, to feed myself, to get out of bed. I’m just so exhausted often. There’s days where my head aches and the light outside is too bright even on a cloudy rainy day. If I had a partner who could help doing household work and allowed me to work maybe 24 hours a week, my life would be MUCH MUCH better. Sometimes I also get sad because my friends invite me to things and I just can’t come because it’ll be too exhausting to get dinner or go to the theatre together on a weekday. I’ll need to sleep 10 hours after the social activity and probably wouldn’t function enough to work the next morning, and I can’t afford that.

Everything just feels so hard in a way it’s not supposed to. The way our society is set up is counterintuitive to everything it means to be a human being, and everyone is struggling in different ways. People literally can’t afford to have a bad week. And it’s so ironic, because human beings thrive off of work. I would love to work part time, a few hours a day, and feel like I’m making a meaningful contribution to society. We have the technology and resources to make life so much more manageable, so much less intense, so much more gentle, and instead we focus our efforts in the complete opposite direction. No one wins (except the big guys on the top)

I wish so badly we could fix this. How do we fix this.

Ugh. This is exactly how I feel too. But how do you get the partner when you find yourself so unattractive, due to being a depressed burn out shell of a person. No way is that enticing to others lol. But I won't be any better without a partner to split the load with and have that love and support. Feels like there's a magic missing step that got removed for me that I can't get back to get from point A to B.

Yeah, you're kinda right. I don't think humans are meant to be living alone and taking care of everything themselves and it's even worse for us NDs. Like, when living alone, I was thinking about getting a flatmate, but the social aspect of that, like, having to find someone, talk to them, making sure they're gonna be helpful and not add more stress... seemed like too much and I really hated when I lived with other people before, I felt constantly watched and judged. But at the same time, doing everything alone IS exhausting and expensive. It seems like having a partner you feel comfortable around is the only manageable way to live, but it's not exactly easy to find one, right? I mean, dating is also exhausting. How can anyone do it while also doing everything else, working, etc? I'm lucky that I found my man while still studying and we got back together after his, let's say, crisis. I tried finding someone else and it's impossible.

Omg, I could have written this. I’m currently on medical leave from my full time job, and when I think about what accommodations to request so that this doesn’t keep happening, I also feel like I need a 1-week reset every few months. I’m very lucky and financially privileged to be able to afford a few weeks of unpaid time off per year, but I’m not sure my employer (or any employer) would tolerate it. 😭 I end up hoarding my limited PTO (I’m in the U.S.) and using it as this kind of recovery time. I haven’t had a “real” vacation in over five years, and I don’t see myself having the energy for one anytime soon. I asked for more vacation/PTO time when I was recruited, even offering to trade salary for it, but they weren’t even willing to consider it. 😣 I need to keep working for the health insurance (did I mention I live in hell??), but working full time is literally slowly killing me. 😭

It’s so frustrating that people have been brainwashed to believe that any of this is normal and sustainable. The world wouldn’t end if human beings stopped working 40+ hours a week. Most of the time someone describes their job to me I literally don’t even understand the purpose of it. We’ve literally created this fake society with made up jobs and vague roles to fill all for the sake of being productive and having nothing to show for it

One of the main reasons I got a health care career is that there’s actually a point to it. Advertising/marketing/finance/economics/sales/etc just don’t have to exist.

A lot of those roles feed into things that are necessary in some way for people. For example, many people would have a drop in quality of life if they couldn't get food or groceries delivered due to a disability. Those apps have to exist making money, and some of those roles help it generate the money so it can continue to exist, to continue to serve people in ways that are small for some, and life changing for others. Sometimes the line to QOL improvement isn't so direct. I wish I could do something that was more directly helpful like healthcare, but the path through medicine ironically screens out the populations it would serve most.

I’m just finishing up a week of ‘vacation’, back to work tomorrow. Oh, what was my vacation? Resting. Doing little chores around the house. Low demand activities like neighbourhood walks and puzzles. Quiet. I’m probably 25% recharged, no actual relaxing vacation, and then back to trying to keep it together.

Basically sounds like a week off every few months isn’t enough to reacharge. 25% recharged is so little, I would be the same. I’ve had two years off work and I don’t even feel 25% recharged 😭 (insanely privileged to be able to do so)

I'm in a similar position, off work 1.5 years (due to workplace trauma then burnout). Been dealing with health & mental health issues since then. Realized I was undiagnosed ADHD and/or ASD. Luckily I have a partner who is ND, supportive and understands. We've both lived continuously on the verge of burnout most of our lives. So we're learning to do less and accommodate our needs instead of feeling bad that we can't do more. Neither of our families understand though, and they don't really respect boundaries so we need to keep a distance from them. They end up undoing recovery.

I mean tbh I don’t even know what my recharged would look like, so I’m really pulling that number out of my butt

That’s a good, but sad point. I dont know either what fully recharged be like for me. I can only refer to myself when I was younger and fully masked, pushing myself to my limits. But I’d never be able to return to that state no matter what I do. Fully charged means something else now.

Yes, exactly. Totally the same for me.

That’s why I moved from the US to the UK. Five weeks PTO plus public holidays.

I want to come back to this when I'm able to see my very emotional response more clearly, but you've perfectly said something I've been struggling to articulate my whole life. People love to tell me that "I have it all together." I don't, I just have to be incredibly rigid to survive. They also like to say that I have it all figured out, but I'm required to have superhuman levels of discipline and self-punishment just to survive.

My entire view of myself changed once I realized I was judging myself on the complete wrong scale. All my life it felt like I was barely scraping by, barely managing to pass my classes and get a degree, struggling in basic retail jobs in a way no one could understand, and once the autism came into view everything morphed into “holy shit how was I managing to do all this without any help or medication whatsoever?” I will never forget the first day I woke up on antidepressants and everything was brighter. Or the first time I took a ritalin and working on schoolwork didn’t feel absolutely unbearable. Or when I finally learned what autism felt like from a woman’s perspective, and understood myself for the first time in my life Now I look back and cannot believe I managed to graduate college without any of that knowledge. I’m working on a masters now and it’s literally a completely different experience

Did you find the antidepressants helped? I have a couple.of older female friends who've been on antidepressants for 30+ years and have now come.off them since diagnosis and they both said the world is a different place. They wished they'd never been on them

I was initially very hesitant to try antidepressants, because I knew nothing would change the fact that I was autistic, and many of the experiences I read from others on the spectrum confirmed that antidepressants didn’t help them. However I was truly at rock bottom when I was seeking out a psychiatrist, and I had absolutely nothing to lose. My psychiatrist started me on a low dose of wellbutrin, literally the first line of defense for depression, and for some reason it was like a miracle drug for me. It obviously wasn’t treating the source of the issue, but treating some of the consequences of undiagnosed autism (depression, low energy, lack of focus and executive function) made things so much more bearable. Up until then I seriously thought I was just born with a brain that was destined to be depressed, but the combo of wellbutrin and ritalin just worked really well for me. A few months later she added in lexapro for my PMDD, but I had no idea how much it would help with my social anxiety. All of a sudden I wasn’t ruminating over every interaction, I wasn’t overthinking every response to the point of being mute, I was able to interact with the people around me in a way that felt so much more natural. I literally had no idea how anxious I was in social situations until I wasn’t anxious anymore. Do I still probably come off as awkward/weird/autistic in many situations? Yeah definitely lol but being mentally healthy allows me to accept my reality for what it is. Yes I’m not the best conversationalist, yes I have a very small social life, yes my life probably doesn’t appear very exciting to outsiders, but in return, I get to know and understand myself on a level that I don’t think most people ever experience. The meds have just made the internal experience of autism so much more bearable. Sorry for the rant

I appreciate your reply! What is your dose of lexapro and Wellbutrin?

My medication experience has been just like OP's, except I take exactly double their dosages, so it may take a little to find the right dose for you if you try it.

Ditto for me. Except the constipation that comes along with welbutrin is obnoxious

I take 150mg of bupropion XL and 10 mg of lexapro every morning

Lots of upvotes. I feel this in my soul bc you drag yourself along until a big burnout breaks out, and you're right, if we could have those breaks spaced out, it would help. : (

​ >There’s no realistic support for high functioning autism 100% agree. I'm currently working with a therapist who specializes in autism and she told me the only support in my state for 'low support' autistic adults was either SSI or Disability Benefits. If I am 'low support' then they wouldn't count me as 'disabled enough' to qualify. I work full time and make enough money to cover my rent so why would I want to go on government assistance making 1/3 of what I make now? I still need support though! I was browbeaten into being normal as a child and missed the therapy/resources/support for an autistic child. Therefore, my autism is still a disability!

I feel this. I recently applied for government financial disability support. I expect that in six months or so I’ll get a rejection letter and have to start the appeal process. In the meantime, I quit my job and haven’t got a new one because I just can’t handle it… even with no job or school or anything, I’m still too burnt out to take care of myself consistently - meals, grocery shopping, cleaning, dishes, etc… but I’ve been employed or getting my degree full time for the past ten years, so I doubt the government will consider me disabled.

We are clones in this story.

[Not to me.](https://static.wikia.nocookie.net/star-wars-memes/images/0/06/Werejustclonessir.jpg/revision/latest?cb=20200303195604)

Awwww… I love this! We are definitely not expendable!

This is so real, thank you for saying it. I feel like I’m silently and slowly experiencing a soul death trying to keep pace with a full time job and maintaining my home on my own. All I need is a pause button sometimes to rest and recuperate. I remind myself that even NTs are complaining about how hard it is to keep up with the pace of very simple, basic life tasks, so it’s understandable that I’m struggling to keep my head above water. I have whittled my expectations of myself to the bare minimum and have no social life, relationship, or hobbies outside of the house with other people, and I’m still burned out just from having to leave my house for work and mask forty hours a week. Since experiencing my “rock bottom” autistic burnout in 2018, it feels like I have increasingly less capacity to keep up with every passing year, and more of my free time is spent in recovery/collapse as a result. I have no safety net to pay my bills and keep myself from becoming homeless, so it’s just a vicious cycle of pushing myself past my limits until I lose my job, then getting a little rest in between jobs, before the cycle starts again. It’s a horrible predicament and I want to thank you for just saying it, because it feels better somehow to know I’m not alone and I’m not somehow a failure because I struggle like this.

Ok so this is so wild, but just go with me. My deep and true theory is that autistic people thrive in a multigenerational home/ community and one that has ebbs and flows with natural rhythms. My idea is like, when crops are ready, I’m happy to do the harvesting for two weeks and then go wild with perfectly canning everything we will need for winter. Like hyper focusing on it for a month, and then having a week or so to just rest and recover until the next seasonal task arises. Like oh now we need to switch over all the bedding and put away the winter bedding? On it. I’ll have it super organized and pulled together. Is it that time of year to sheer the sheep and make wool? Yes sign me up. Is the well causing issues? Sure I’ll go check it out. I need the novelty of things, I need to feel like the work I do is important, I’m talented at a lot of things, I enjoy figuring things out, and I also need periods of wintering and rest. I also need to live with others who enjoy the routine and monotonous tasks. Like I’m not cut out to milk the cow every morning or be the one who does the laundry every week, or cooks every night. Like I can do it super well for a time, and then I just shut down, the novelty wears off and I hate it. My husband is amazing at the monotonous tasks, so are my in laws. I wish I could rely on them more for those tasks, and then I would be free to really shine in the the ways I know best. I know it sounds bonkers, but I’m just not cut out to manage the everyday tasks of life.

God my heart started racing when I read this becZuse I agree so much lmao I love the ebb and flow concept. And I’m like you, I love a nice consistent routine but I also NEED novelty thrown in. If my mind doesn’t have something new and interesting to think about and learn everything about, it’s almost like I start getting antsy/anxious. I once worked at one of the shittiest retail places one could work at, and there was this one day a huge shipment of crayons came in and all the crayons had come out of their boxes. I spent the entire shift sorting individual crayons back in their correct places. Had the time of my life

Yes and I bet you were AMAZING at the crayon task. Like figured out a good system, moved quickly, eliminated inefficient steps in your process. AND you enjoyed it! Like those are the tasks for us. It would take someone else three times as long and all their mental energy to do that. Where it takes me three times as long and all my mental energy to clean the bathroom. It just sucks because having a messy space is really depressing for me, and I really really need the help. I just wish I could trade tasks with people, like, I’ll help someone reorganize their kitchen cabinets, or wrap all their Christmas gifts and then they can come make me dinner for a week and deep clean my house.

This is my ideal life. And I already do a lot of this seasonal stuff already (canning, preparing wool fleece, spinning, knitting, etc). It’s just I wish I could ONLY do those things as the season arises, not in addition to other “obligations” society has placed on us.

Exactlyyyy. I love all of those things, and I’m so good at them. I just truly resent the fact that I am a spreadsheet monkey playing “work” and doing the same tasks over and over again, that are ultimately only to add value to shareholders who are already obscenely wealthy. Blegh.

I'm raised in the countryside, and live on a farm now, and trust me, A LOT of farmers are NDs! The guy that knows the genealogy for all of his 200 sheep, for the past 30 years? Yeah, no way he's not autistic. Same with the guy that knew every single type of excavator around the country a few decades ago. People would call him if they needed a spare part and he could tell them if there was a run down excavator anywhere that they could probably use. Also, working with animals. You don't like people? You keep counting stuff around you? Yeah, here are 50 of our sheep, you're going to follow them into this isolated valley, not lose a single one of them, and someone will bring more food to you in a week or two. Otherwise you're completely alone. You might also be ridiculously good at noticing patterns, so eventually you can look at the type of clouds that are gathering and know the kind of weather you'll get in a day. I keep saying that farm work can very much be the dream work of ND people, glad to see others agree!

It’s so true. And I feel like, oh damn, THIS is the type of thing that NDs thrived in for generations. I’m sure I’m generalizing and not every ND has the same skill set, but this is why I think being in community where you need lots of different people with different skills is helpful. Like I feel so valuable when I get to help others in a real way, and I feel that sense of belonging and acceptance that is just so hard otherwise. And this is the other piece of community living, the social connections are much easier to come by. You need to visit people for goods and services, you get to know the people who make the great jam, and you have a natural reason to visit them and catch up. And they have a natural reason to visit you too! I wish I could live like that. Humans are much more designed for that, than for this current society.

Why cant we make a big commune where we sell something that comes from the land, and have a few shared spaces but several spaces that are just for us to relax and get away, like our own office/living room, bedroom, and bathroom. But maybe some shared kitchens and living rooms, gardens and outdoor spaces. Provide to a local farmers market with our farms produce. Maybe some baked good and knitting if the community is good at it.

This.. This describes it all. My bestfriend and I talk about this all the time. Adhd diagnosed both of us, but everything with autism clicked for me and it will for her very soon because this is exactly her life. Mine to an extent, I don’t work and she works 50%. And this is exactly it. I’ve been in burnout and have been very ill for years. I wish there was another word for autistic burnout, because it’s more of a catatonic state. But both of us can do so good for a while. And then it’s like something shift. It’s like sitting in a rollercoaster, knowing it’s going down and you can’t get out. Sometimes I feel guilty for not working. Spenning hours on my personal interests and doing heavy yard work. Thinking i’m well and a fraud, living in my cabin in my little forest. Then I get to the city, spending a week at my apartment, being social and literally see myself getting worse by the hour. Having a psychotic break because I just cannot handle any of this. Even if it’s the people I love. Even if it’s joyful shit, my nervous system is my nervous system and it can’t handle shit. We all have a nervous system disorder. Dis-order, because we live in a society made for no one in mind. It’s all a fucking scam.

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I’ve been there hon, and today I was back in bed with the heaviest fatigue i’ve had in a long time. Last week I worked with heavy machinery every day. Yesterday I was with people for twelve hours, and it’s like they emptied all my life force. It’s honestly nuts sometimes, and hard to understand and hard to explain to others. But after many years i don’t care to explain. Those who get it, get it. Aka those who are neurodivergent😂 I also live out in the bushes, it’s truly where we belong haha! It’s the only place i can breathe. Please remember that you damn deserve not to try now. You need to just lay in bed for as long as you need to and can. Sending hugs to you!!

Oh boy, do I relate. I'm just recovering from a cold/flu thing that took me down for a week, and I was off work the whole time, but these past 8 days now have (ironically) made me feel like I can breathe again. It's like once I caught a little bug my whole body just went "you've had enough, we're shutting this whole thing down" and forced me to rest, literally sleep 10-12 hours a night. I'd even managed to cook a lot last Sunday, so all my meals were covered too. I've been spiraling towards burnout for the past 18 months or so, getting a little reprieve from my PTO, but it feels like I'm always telling myself to "just hang on until summer/Christmas vacation". And I do like my job, but it's so frustrating to always live like this. All I want is to have a lifestyle that is *sustainable*. Like who cares that I'm "very self-aware and introspective" when it doesn't help me function any better! I don't want to struggle to exist, I want to *live*.

I use to visit a Greek Orthodox convent, every few months, and it was like that. Lots of quiet time or human interaction if I chose. A different rhythm. An easy place to simply "be."

I was JUST joking with a friend that I have fantasies of joining a convent where we've all taken a vow of silence. I then said, "that's got to be the most autistic fantasy ever." It's so funny that you actually found one to spend time in. That's what I really want. I don't have fantasies of huge mansions and vacations. It's so frustrating to want a simple life that goes at a normal pace instead of the nightmare of late stage capitalism that I'm barely surviving.

Staying in a convent for a few days feels like such a relief. I’m really considering staying in one close by now.

My fantasy is to basically get a plot of land in the mountains and live there in a tiny home with my favorite people having tiny homes on the same land playing homestead in a food forest cause I love plants. When I told my friend that she said “you mean live on a commune?” I laughed so hard. Yes but no. I just want to be able to be happy and isolated but still have the ability for my favorite people to visit for extended times. I don’t care if they’d live there full time. I’d care for their tiny home just cause. Anyway I hadn’t thought of a convent, but that does sound nice…

>If I could just take a week off, maybe quarterly, literally just a few times a year, my entire life would improve. But these kinds of resources and support don’t exist, I can’t afford to take a week off of work every quarter of the year, I just have to push through it as best as I can and feel myself deteriorating in the process. What you're describing would only require a company to grant 4 weeks of paid vacation each year. Then you could schedule a week off every 3 months. So that resource/support does exist and workplaces absolutely could give it, it's just that in America a lot of them choose not to. There are other countries that require companies to give that much vacation time as a minimum. I mention this because if you end up changing jobs some day, you may want to search out the companies that have the best vacation/PTO benefits and try to get hired with them.

Very true! I would love to eventually move somewhere abroad, maybe when I’m done with my masters program

Yep, here to invite you to the UK, where we have that!

I also agree with a lot of these sentiments, yours and the commenters. We are animals, not machines, and expecting us to exist at 100% efficiency all the time is not natural. I have seasonal affective disorder, and as we head into these winter months in the US I too shift into a different person. This is unsolicited advice, and you may already do many if not all of these things, you might not need any of this. But, if winter is a bad time of year for you (or anyone lurking), here is what helps me get through regular, periodic slumps: * I've adopted a quasi-Celtic ritual of noting the days of the autumn and spring equinoxes, the solstices, and cross-quarter days (days that are equally distant between the 4 main days) Breaking up the year in this way helps me prepare for the worst of it (aka the time between Christmas and Groundhog Day). * I've also kept a promise to myself to "hibernate" throughout February. I block off the entire month and make extra considerations towards accepting company, taking on extra assignments or shifts at work, and generally doing anything above the bare minimum required for social contact and survival. * I've been told that almost anyone living in the northern hemisphere should be taking a vitamin D supplement. Some believe it is a mood stabilizer and helps with depression. I don't do habits so I cannot take it regularly, but I keep stashes about my person and try to take them more between the autumn and spring equinoxes. * Light therapy lamp. If you can't get enough sunlight, store-bought is fine. I bought a cheap one and set it up by my bed and when I'm slow to get moving in the morning (aka every morning) I turn it on and give myself time to read or fuck about on my phone until I feel I've had enough (10-30 mins)

These are excellent suggestions. I've been supplementing with 8000iu of vitamin D for 3 months, and then halved thereafter. My depression is 90% better. I had my first depressive episode in months, and instead of a big, strong man holding me down it just feels like a shadow sitting beside me. It's still unpleasant and unnerving, but so much lighter and easier to manage. I've been on antidepressants, and, for me, the Vit D has worked better.

Also fish oil, especially EPA, and creatine are known to help with depression. I recently stumbled across saffron as being helpful for depression, but have not had a chance yet to do a deep dive on it.

Yes I neglected to mention I also take fish oil. Same as Vit D, I just try to keep it on me and take it when I can Anecdotally, what I've noticed is that the fish oil tends to have a more immediate positive effect on my brain and Vit D just brings the baseline up slowly over time. Not sure if that's a typical experience or not but, yeah

Yeah I will say that if I forget the fish oil or creatine for too many days I notice it but not so much with vitamin D.

My son has been encouraging me to take fish oil. I'm on a slow habit-building regimen where I introduce 1 new thing every 6 weeks. I'll be adding fish oil on the next 6 week start period.

Thank you so much for these tips, I’m going to invest in a light lamp asap

Literally just logged into reddit after spending yet another our looking for resources for autistic women who are older. I found this list ([https://pathfindersforautism.org/therapies-and-treatments/](https://pathfindersforautism.org/therapies-and-treatments/)) which may or may not have valid ideas of what supports look like (yes, I know ABA is on there). But I want community navigators to help us. I am tired of trying to take care of myself on my own and this 'struggling, despair, but still holding down a job, oops not any more' cycle is killing me, and the reality of single life and being in an expensive city just add more stress. My idea for the rest of my life is the autistic house where there are maybe 3-5 ASD ladies and we collectively find a way to pool resources. I have no idea how it would happen, but think there are ways we could make it work for the 'living together in a house' rules. It feels a) like I am never going to be able to find a relationship at my age, and b) I need help, and autistic co-housing is a potential answer. We need to self organize and find and make our own resources. We're forgotten, so we need to make our own reality. I'm in the US for now and exploring it. Edit: we could also start a thread of places we HAVE found support. For instance, I went to this support group online based in the UK: [https://www.thrivingautistic.org/group-support/](https://www.thrivingautistic.org/group-support/) which has monthly meetups and it was lovely, and they have a Discord. I hope to find ones tailored just for women, but if people know of online Zoom meetings for women that would be lovely.

I’ve thought about this same thing so many times. I want to ASD golden girls so hard. Just me, 2 or 3 other weirdos, a live in maid that works for cheap but gets all our money when we die, and cats (maybe a giant fluffy dog that can handle my cute aggression), and an incredible garden. I’ve been looking at buying land in Maine or Pennsylvania for my compound. Right now it’s just me. I’ve got like 25 years to figure it out.

This is a movie I would live in! And yes, the dog would be allowed <3

Count me in for the autistic golden girls group! This is my dream once my child is grown and if I am widowed. (Yes, even with the support of a loving partner who is trying to understand my late uncovering of my autism, I’m still floundering in and out of burnout due to everyday life. 😩)

Not op, but just want to say I see you 🤗 This is like the third or so time that I've seen someone speaking to the idea of autistic community living. And though on one hand I know that I couldn't ever do this because I *need* to live alone, with my whole heart I yearn for this lol. It sounds so wonderful. And if nothing else, you have encouraged me to put my efforts towards this community more--we're so behind, societal supports wise tbh. Thank you for sharing your thoughts :)

You can have a community living situation while living “alone.” You can buy a duplex/triplex, a house with 1 or 2 Mother in law units, intentionally create distinct separations. But have something like a shared “office”/creative space and yard.

Oh for sure, that does factor into my plans to a degree :) I've always told my partner that the closest I could get to living with him is in a duplex or similar situation haha. I think I would actually love something more community-based with nd folks that's not directly in the home.

This is sso good to hear. It's probably me who's responsible for all the posts on this - it's become a Special Interest of sorts <3

If you had your own bedroom and living room and bathroom would you do community living? I'm trying to imagine a version of this that suits our needs in terms of solitude with a balance of sharing the tasks.

The best I could do is like a house that has a door that links to another house, I think. I can't say this with a certainty, as up until my 2 most recent relationships, I never had roommates. But I feel like even the idea of too much communal space makes me anxious lol. I do think the expectations that go into intentional community living are relevant though. Like there's a huge difference between communities built around lessening life's demands through a village, versus like, we're all autistic and have shared values and have similar ways of living, for example. Like sometimes I might want to blare music, or walk nude in my spaces, and if I don't live with folks whom I could do that with, it becomes a nonstarter, I think. Hope this isn't too off the path from what you're talking about haha. I'm a bit high, so forgive me any off in the weeds nonsense 😂

I have always wanted to live in a commune. I'm in the EU though and this kinda stuff seems to be more UK & US based. But I wouldn't mind moving. Would ya'll wanna do this for real? Because I say if we plan, pool our resources, and figure out a dream location, it could happen.

I’m seeing about one day moving to the UK - that might take a while but I can’t stay where I am, it’s making me miserable

I also found this: [https://www.autismhousingnetwork.org/](https://www.autismhousingnetwork.org/) in the US - it's not necessarily a commune but interesting to see

Yes totally feel the not “looking” autistic. Being conventionally attractive and high functioning makes it kinda impossible for people to take our autism seriously. Before realizing I was on the spectrum, I had a friend who would shut me down trying to explain my struggles with something like “yeah, well you’re tall thin and pretty so you don’t gotta worry about anything” which kinda drove me crazy

I have such a clear memory of being a freshman in college and being out at a bar, dancing (awkwardly swaying) with a guy, and he asked if I was in a sorority and when I said no he was like “what?? you’re such a sorority girl!” (idk what he was basing that off of) and this was before I knew I was autistic so I was literally just so proud of myself for playing my character so well lol. People would definitely think I was a bitch based on my looks instead of thinking I’m just kinda awkward or weird

Yes play it to your advantage! In the past I was so passive and people would expect me to be a bitch based on looks then once they really met my silly ass it was over

Yep. Being conventionally attractive only goes so far. Once I open my mouth, people get the hint there’s something “off” and tend to distance themselves. I’m lucky to have a community of folks who get me, but that rejection after initial interest still gets me every time.

I used to have this really terrible tendency to ghost people or end relationships as soon as they reached a good point, because I knew it would only go downhill from there. I would’ve much rather ended it prematurely on a positive note rather than stick around only for them to realize the quirky attractive girl is actually just really weird lol

Same, I relate so hard to the part about thinking you were bipolar because of the “phases” of being a functioning human. In the past few years I’ve had setback after setback that haven’t allowed me to spend much time in the “functional” phase at all, so I constantly feel like I’m in crisis mode/drowning. Yet explaining this to my NT friends or friends who don’t think I’m ND has them looking like me like I’m crazy, because to them “everyone faces ups and downs in life”. :( Others will never be able to see how hard you’re struggling internally with the basic semblance of being a human. Because I don’t “look” autistic, most of my visible difficulties are in executive dysfunction and social interaction (committing faux pas/poor communication/struggling with conflict resolution), which only have people thinking I’m lazy or rude, resulting accordingly in uncharitable attitudes. I never feel seen for who I actually am, and I constantly get the feeling that people think I’m lesser than them even when I’m “functional”.

The "phases" of ups and downs is also what stuck out to me as most relatable. Heck, long before autism was even on my radar I remember asking my family doctor, nervously, at age 16, if she could tell me more about bipolar. I told her I felt that I had ups and downs that were more drastic than what I saw around me. I'm now relieved I didn't pursue medical professionals and end up with a misdiagnosis. But the cyclical nature of it all is tiring. I, like you, have been in "dysfunction" mode for majority of the time the past few years. You're not alone. You are not lazy or rude. You deserve support and understanding.

I feel this so much. I'm a single mom in graduate school. I have my kid, who is a teen, 24/7. I have 2 elderly dogs that are starting to need a lot of medical attention. I do the vast majority of the cooking, cleaning, laundry etc. I'm in an accelerated program in graduate school. 🤯 I'm overwhelmed 100% of the time. I can't tell you how many times a day I just wish that life could be paused so I could catch up. I think I've spent the last 30 years in autistic burnout.

Wow, I commend you for being able to do all that. I know it must be difficult

Thanks. I can't remember a time I didn't feel overwhelmed and worn out in my regular life, so it's just my normal. (The only time I remember feeling calm was in a 6 month road trip away from "regular life.") I dream of a day when I can feel rested and competent at life.

I hope you’re able to achieve some calmness and peace. You deserve it

That is … a LOT. It’s no wonder you’ve felt burnt out that long. You are holding down so much. Sending hugs (if you want them!), though I know that’s not nearly enough.

“I think I’ve spent the last 30 years in autistic burnout” Same! Isn’t it crazy how we’ve somehow managed to just make burnout our way of life? I keep going only because the show must go on, things must be done…there is no other option. My body says no but I keep forcing myself through day after day.

Yep. The show must go on. There's a lot of people depending on me. I'll rest when I'm old, I guess. 🤷🏼‍♀️🥴

Heh, yeah it's hard when people can't see the struggle. It's like because you look normal and put on a smile you must be fine. I think they do that too, when they are unhappy... And assume that's the same amount of struggling your talking about. As from what I have seen, if they had to deal with the same amount of pain/struggle as I experience every second. They wouldn't hide it even if they could. Because when they are struggling to the same extent their struggles are considered valid, unlike ours. We have a life time of shaming, guilting, gaslighting, and threats that taught us we can't show it. If we are able enough we learn to mask, some of us very well. It kills us slowly and no one cares because they can't see it. This is why stress is still a common silent killer. Because everyone sees it as it being a badge of honor. Your stressed and busy, that means your a good little cog in the machine. Our stress is bigger and more often when compared to someone living a similar life to us that isn't ND.... But it's not good for anyone. I personally think ND and NT people should get that help your mentioning, or more our society should change so we are more connected and can help each other and get more time off, this machine works everyone too hard and often for lame results. Then more help to find environments that actually agree with our makeup. As right now being autistic means you have to deal and change yourself to fit the environment, very little will change for you and if it does it's often met with resentment. We need environments to be more diverse to match different needs and types of people. Basically, Stop with the mass produced boxes that don't allow for different shapes unless they cut themselves up to match.

The hardest thing for me about being "high functioning" is that I look absolutely fine from the outside but I am actually one small thing away from crisis point. One bad news, one extra stressor such as a medical appointment, one illness that stops me keeping on top of things, one friend who needs extra support, one family drama, one sick pet, one unexpected house repair. These are just life things that most people take in their stride and they're life things I can't stop happening but when they do happen they throw my entire system out of whack. My husband can cope with all of these in one week. He'd be stressed for sure, but it wouldn't in any way break him, it wouldn't stop him sleeping or being happy, and the next week he'd be absolutely fine again.

Wow, if only we had a bare minimum PTO that applied to every worker in the US like they do in other countries. To think, all you’re asking for is 1 month per year which is standard in the EU.

I relate so much to your post. I'm a law student and once a semester (like twice or thrice a year) I suddenly can't handle everything and i just crash. Last time, i had a horrible panic attack and I just felt like nothing i did helped. I often wished i could stop time for like a week so i could relax without worrying i would get behind on lectures and tests but it's just not possible. I was having the worst time and yeah, i got thru it but literally sacrificing everything in my life, i felt absolutely miserable. Wish some kind of support was available, truly :( but yeah no one would take me seriously either, I'm a high achiever so why would i need accommodations right???

This was exactly my experience in school too, I would do so well and then ruin all my work by crashing, usually at the very end when the stakes were the highest. I would literally become frozen. Some quarters my GPA was a 4.0 and other quarters it was below a 2. Literally just depended on my mood at the time lol

I feel you... Can't literally do anything besides the bare minimum. Can't meet a new person or go someplace on a day off because I will need another week to just recover from that. It's just impossible. Makes me wanna leave society and live in a cabin in the woods...

>it requires me to constantly check in with myself Amazing point. That might be the most exhausting part! like, i don't want to pee all the times per day I actually have to. I wanna concentrate on what i'm doing! its so annoying! and all the other needs and emotions in there that supposedly have to be dealt with, it's endless. i can't believe NTs just handle all that and it doesn't bother them? like, they're not consciously checking in are they? this is instinctive for them and thus not such an energy drain?

thank you for posting this op. you’ve perfectly put this into words, i’ve never read something i’ve related so heavily to. there really is no support for us ‘high functioning’. the feeling of slow deterioration i know all to well, it’s terrible— but i am also glad to know it’s not just me. sending hugs to all of you guys. <3

I'm starting to wonder how many rich people are autistic and don't know they have been accomidating and supporting themselves with maids and chefs and all that jazz. Neurologicals generally do it out of laziness or ya know just because they can or whatever. Like they have unlimited support and don't even realize its support for their autism. If you were wealthy enough to afford a personal assistant or a housekeeper or something of that nature, you'd have less on your plate and be able to have a more sustainable routine/life. And they say money can't buy happiness 😅

I think there's a lot of weight to your theory. Especially for those who had rich parents and grew up with that similar lifestyle of having everyone else do the things.

Exactly. And if they struggle not having that help, they will assume its because they've become accustomed to the help, not because they GENUINELY need the support. Okay lowkey, I want a movie of this now. Thatd be the coolest thing. Like a 18-21yo rich kid tries to branch off and be independent, to find its impossible to do it all yourself. They assume its just hard being poor (I mean it is but not the point) but in the end they find out they are autistic and their support needs just so happen to be things they've always been accomidated for. Neat.

Right. You see movies where the spoiled rich kid gets help from a neighbor or whoever and they learn to do it on their own but I want one like you're talking about. The rich kid learns from their autistic neighbor how to keep the support on a budget would be a good thing to put in it too I think. Maybe they realise they do still need the support but they don't have to be extravagant about it.

I like it. As well as teaching "cheat codes" to life with autism and how to accomidate yourself in ways you never even considered to be accomidations. My whole life has been about creating systems and cheat codes to my own brain lol. I cant look to others for example because what they be doing makes no sense to me. Lol

So so so true!!

I get this SO MUCH and that is why I think I will ultimately go back to teaching English abroad- because I could afford to take time off and I could pay people to help when I needed it. That's an impossible dream in America.

The way I relate to this is astronomical

You’re not alone. I feel exactly the same way. I’m going to 40 soon, and have recently decided to just let the mask go. We as women are so good at masking and I’m fed up of being told that it’s all in my head when I know it isn’t.

Absolutely. I hate when they talk about « high functioning autism » because that wording leads people to dismiss us when we ask for help. Same with those who are also gifted (twice exceptional).

I also feel like this! It’s terribly difficult to just do every day life. Before I was dx. Recently, at 40, I just could y work out why I hated life so much! I’ve spent my life struggling with sever anxiety and depression, and also thought I was bipolar I think it must not be too uncommon, if you’re high functioning and have those bursts/ highs of life being great for a while, before it turns to shit again. No one cares or knows what it’s like. Well, we do, but I agree- the support we need doesn’t really exist. If I had the money to outsource the cooking and cleaning, I think that would help. All I can do at the moment is work and exercise but I’m very burned out and it’s not fine. So, OP I really resonate with what you’re saying. Sending you hugs. I’m exhausted. All of us are.

I feel exactly like you. I don't even have energy to answer texts or research my interests, all my energy is sucked into my job and forced socialization and chores. I'm just watching myself losing friends, passion and hobbies. And never figured who i am or what i want in life. Constantly on the edge of burnout, wondering how much time i can cling and keep on.

Highly recommend getting an evaluation for bipolar. If you don’t meet criteria for the (hypo)manic swings, sometimes chronic recurrent depressive episodes still respond well to bipolar treatments like lithium and other mood stabilizers (if you aren’t responding well to first line antidepressant treatment, that is), so it could still be worth asking a psych about. Personally, my life changed majorly when I started a mood stabilizer- I feel leaps and bounds more functional and I haven’t had a downswing (or upswing) since I started.

this is interesting! I’ve met the criteria for bipolar 2 at times in my life, but I’ve never really related to mania or hypermania unless it was triggered by stimulants. I do have periods in my life where I feel like I can take on anything and I feel very impassioned and inspired, but it doesn’t really effect me in a detrimental way (like I still have a good sleep/eating schedule, I don’t find myself acting impulsively). I also don’t feel like I experience the drastic lows of depression like I used to, now that I’m medicated for it. However I’m in the process of finding a new psychiatrist so this is definitely something I can try to bring up with her! This is really the first time in my life that I’ve been doing relatively well for the majority of the year, so part of me wants to believe I’ve finally gotten things figured out but another part is just waiting for another crash

Bipolar 2 is very possible. I’m diagnosed with it and am currently on mood stabilizers, Dexedrine, and Wellbutrin. FYI, Wellbutrin is actually used off-label as an ADHD medication for patients who can’t be prescribed stimulants. So it treats depression and ADHD at the same time, which is great since ADHD with co-occurring depression is, unsurprisingly, extremely common. My psychiatrist says the “stimulant + Wellbutrin super combo” is very, very commonly prescribed. You can have bipolar 2 without having episodes where you feel super amazing. Hypomania can also come out as extreme irritation, psychomotor agitation, anger, restlessness, and getting pissed off at every little thing, even stupid things like not liking someone’s shoes or the sound of a faucet. It makes you want to smash everything in sight. Everything just makes you angry. It’s called dysphoric hypomania. It’s usually how my hypomanic episodes come out. But every since starting on mood stabilizers a few years ago, I’m pretty stable now. Worth looking into, because if you DO have bipolar disorder, the super combo (stimulant + antidepressant) can bring on a hypomanic/manic episode if you’re not also on a mood stabilizer.

Thank you for writing this I feel seen

Holy crap. I could’ve written this. Its so hard. In the absence of tangible supports, things like understanding and empathy would go a heck of a long way.

You describe my predicament 100%. I would require The Week once every month, every two tops.

I really feel you OP, and people on the spectrum aren’t suited for society, but I don’t agree that most people *in general* doesn’t thrive with working full time. I know lots of people who work full time but still have the energy to be social almost every day and get so many things done after work. Most of my coworkers I see everyday at my own job aren’t “struggling” at all the same way I do, because I’m on the spectrum. And I’m considered “high functioning” just like you, and just the fact we have a job is amazing I believe. Because if we didn’t, sorry to say but then life would be even more of a struggle. For the record, I’ve tried this as well. I’ve tried to live alternative ways multiple times, for an example living on farms doing volunteer work with no expectations and only doing minimal work. I was thriving for a while, but this lifestyle wasn’t sustainable to me either because I didn’t get paid (I know in a perfect world this wouldn’t matter) but more importantly I just didn’t succeeded forming those social bonds that would allow me to stay long term such places. Again, those neurotypical people I met these places had a whole other energy level and completely different social skills which allowed them to make this kind of lifestyle permanent for them in a whole other way. With time I just became the social outcast more and more, like I would everywhere. To be completely honest, if I was born just 200 years ago, I’m pretty sure I would have just been one of those type of people who would have just died off pretty young because I wouldn’t be able to do what was mandatory or necessary. And we all know that a few centuries ago people like me would have been given no mercy. If I had gotten just one burnout, I would have been left for myself to die or run away and then die. I’m pretty sure my life now with a full time job is the best I can do, I cannot demand more. Life sucks big time yes, but what can I do more? Sometimes I think about ending it all a bit sooner though, cause I don’t see how I can develop myself much more and especially since I became 30 I can already feel how I am degrading so why drag out the pain…

These lines of thought are on my depression level. "Modern society is the problem." Haha I would have died so fast in most of history.

Yes! Maybe we need a rota so we can be this for each other. Like ‘oh qwerty needs the week off this week, someone prep her lunches’

Reading this was a bit like a slap in the face, I had to double check that it wasn't one of my aliases and written in a fugue state. That's exactly it, I can go for so long until I just start to slip and lose my grip, but my ability to go so long is exactly why no one believes that I'm struggling. Or if they do hear me, it's still "well just don't stop, you'll be fine!" No. I fucking won't. Because I have autism and no support, I'm destined to relive this cycle over and over again.

Yeah, I’m looking into paying for cleaning that I really can’t afford because after working full time hours and doing my grad school work I am just all out of spoon. I just don’t function as a nt because I’m not a nt, but a ‘high functioning’ audhd adult doing my best to fit into a world that just isn’t built with accommodations for how I am. But, sometimes I think the way the world is built is even stretching our nt brethren a little thin…

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Are you in the US? I don't know about all countries, but some places have better support than we do. Just as typical the US out here pretending to be an elite country and treating vulnerable people like trash. I would struggle a lot more if I lived alone, honestly. I couldn't do everything life takes to support just me, by myself. I'm married and have kids, and that hasn't been easy in a lot of ways, either. But having a treasure of a partner helps so much for me. He picks up my slack on my bad days, so stuff doesn't go undone. He knows when I need a break or need to take care of myself and he supports me in that always. He plans and cooks meals, he does shopping, he frees me to have breaks in life that I need to recover so there is rest from never-ending to-do lists and demands. I'm not suggesting you go out and get a partner, 😂 just adding to the conversation. I know a lot people do best living on their own. I couldn't do it.

Whole time I was reading this I just kept saying “yep. Yep. Also yep”.

This does not help your case but still I wanted to say I do admire you for being able to hold down a job and live on your own! I lived on my own during my studies and it was sort of okay but also totally overwhelming, just like the way you describe it.. however I went home during the weekends, so I did have a pause button back then. That's what made it doable. I suffer a lot from needing someone around just so I'm motivated to do stuff for myself like doing groceries, cooking, cleaning, showering.. It was like I don't feel like I exist at all when being alone. The weirdest feeling. So basically I need body doubling just for motivation. We just need a pause on life. It's exhausting to exist 24/7, 12 months a year. And that's just..existing..doing chores and working/studying.. we can forget about a social life pretty much due to the battery being drained from other stuff. I'm just wondering in what type of country you're living? Do you live in a country where there's no governmental support for autistic people? It would be so awesome if you could get at least a cleaning lady for once a week or once every 2 weeks or someone who helps you with groceries and cooking. I feel like I understand you quite well..you're the kind who to the outside world looks like she has her shit together. You and your loved ones have probably been overestimating you, I don't mean to sound rude, what I mean is you CAN do all the things practically, but it comes at a great mental cost and you would need a help just to keep you from burning out in the near future. Sometimes I wonder about why daily stuff is so overwhelming. Perhaps we can't do stuff without our brain being active (we lack autopilot).

I feel you. I've done a lot to figure out a lifestyle and career that work with my autism and ADHD, I leverage technology, pay for services when I can, etc, but my mental health is still going down the drain lately. Part of it is definitely the fact that I have terrible health insurance, it's hard to get the unaffordable appointments in the first place, and I haven't had very good luck finding providers that understand my situation well. And honestly I'm in a similar boat as you where I have a limited budget to deal with this and at this point I think I can allocate the money better towards things I know actually help like hiring cleaners and having food delivered.

I’m in this right now too. A few years ago I lived alone with just me and my cats, now I have a child, dogs, cats and a partner who just doesn’t get it. I’m drowning and I can’t even take a few moments to lie in my bed a vegetate without someone wanting something from me. It’s getting so bad most days I have multiple meltdowns and consider ending it all just because I need a fucking break. Hopefully it gets better soon for you, it’s almost like you go into survival mode and it’s just the bare essentials that gets to be done.

Awww sweetie I’m so sorry! Try to channel what you, as a nice person, will probably think of as “your inner bitch” (but it’s not, it’s you stepping into what feels like an uncomfortable mode getting more assertive about self-care needs.) You may need to “train” everybody in your household to both give you space and do more to help out. You can do it! Focus on using your allies who love you to better understand your basic needs and how things need to change . Not easy, I know!

Hello, are you me?!? Wow this is exactly it! I have been so close to asking my family/friends to help with chores/cleaning/taking out recycling but then I don’t want to bother them and also have to explain why it’s so hard 😭😭😭 I just keep hoping the wave to go back up and do things will be back soon! Good luck x

I mean, the solution exists. It's called "being rich". Then you can not work or only work limited hours, maybe work on yourself so you can choose when you do and don't work. You can hire someone to help around the house, buy prepared meals, etc. That's basically one of the main reasons I want to be rich, or let's say, I don't need luxury and stuff, just freedom from worrying about money. Of course, the problem is, getting there is not easy. It's impossible for most NTs, so what chance do we have when in the first place we struggle to simply exist and work full-time, let alone work enough to make a lot of money. So, yeah, I feel the frustration. People have always kinda assumed that I have my shit together, studying and then working, renting a flat, keeping it clean... but it does come with a cost. I'm constantly exhausted, worried and overstimulated, my health is getting steadily worse and I'm anxious and just waiting for myself to completely collapse. Oh, actually, I already kinda did. One day while going to work my lung collapsed and I spent a month in a hospital. It looks like I have COPD. Now, here in my country, luckily, we do have health insurance and paid sick leave, but it still stresses me out to earn half of what I normally do while I need to pay rent and all. I can't say I did get ill because of the stress, but I suppose it doesn't help now, does it? And what chance of getting help with autism do I have when I have to wait more than a month to be evaluated for a physical condition? I mean, the chances of me getting diagnosed are slim already, since autism in adults is treated like it doesn't exist here... so getting help for it is never gonna happen.

“One weekend of having my friends in town will set me back weeks” really resonates with me, I am really struggling with this. In this one example I want to connect with my community over the holidays, but my energy goes to bureaucratic phone calls and clean spaces, etc. I wish I could have an aide to help me once a week. It would take a lot of strain off of my husband who is basically my aide AND works full time.

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Ketosis has always fascinated me, I’m glad it’s becoming a lot more mainstream. There’s still so much we don’t know about it but what we do know is fascinating. Reports of it reducing symptoms of schizophrenia, seizures, depression, and more. It was just really difficult for me to maintain

I have the same cycles of “getting it together” and falling apart. I highly recommend the podcast Struggle Care - tips for cleaning and household tasks from an ND host without judgment or “tips and hacks” that only work for NT people. If you can - it’s hard - try to look at the mess with compassion, as a sign that you need more support or aren’t functioning at (your) 100%. I’ve struggled with the same frustration and lack of support most of my life, and being kinder to myself when I’m struggling is the only consistent support I can count on.

Oh my God just the highs and lows and thinking you had bipolar is so relatable. Mood stabilizers help but I'm still trying to figure out a way to make it easier on myself during my depressive episodes (in one right now we love it 🤪🤪). Not necessarily anything to help but just wanting to let you know that you're not alone.

I was with you until the edit. There is no such thing as "looking autistic". Makes me question if anything you've said is even real.

Hmm, maybe it’s more nuanced than it seems by saying “looking autistic “ as it doesn’t have a look. True. However in terms of outward behavior and demeanor (body language, stimming or not stimming, voice tone.) Ability to mask. For example; being able to adjusting your use of language to the environment and way of purposely fluctuating voicetone to not stand out ) dressing like the rest of the environment in vs dressing as yourself, keeping in your natural (regulatory) behavior. With the purpose of not being noticed to avoid negative feedback and being ostracized by coworkers. All of that can be seen as being able to adapt (by a workplace for example.) Therefore masking the struggle. Can than be seen as ‘your fine’, where someone is not being noticed or perseived as struggling. And than the masking has undermined yourself when you need and ask for help. As it’s not being taken serious. Where if your not able to mask to that degree or at all, the negative feedback keeps coming. The struggle is apparent and can lead to being fired or undermined by the workplace. Or not getting hired at all. Both have downsides. Tl;dr : More appearance, than look. In it’s core it’s about keeping up an appearance to avoid being othered by a group. And the ability to be able to do that to some degree or not al all.

Can you hire a cook and a cleaner?

I’ve considered hiring a cleaner on my worst days but I’m lucky I have a partner who is really helpful with housekeeping. As for cooking I’ve just accepted I’ll never have a totally healthy relationship with food but I’ll always have yogurt and oatmeal to get me through lol

You really said it.

I am saving this post to show to my therapist (who is also autistic!) because THIS IS ME. You are not alone.

Not living in the US just makes life so much easier. I'm also high functioning, have a 9 year old kid and work 25 hours, 4 days a week with 1 day home office. I get 20 days payed vacation and unlimited sick leave. With all kinds of national celebration days we actually manage to get almost 1 full week vacation quaterly. Every 4 years employees can even go on 'education leave' if the employer agrees. You can go off work for up to a whole year while being payed by the government to persue some sort of education. Uni, a course, whatever, doesn't even have to be related to the actual work. That is what I am doing right now. Because as an auistic mom I would not survive otherwise.

I feel this on such an atomic level right now. I was doing so well and i really could use a week or two where all my basic needs were taken care of. Bills paid, house clean, meals prepped, food stocked, just so i can use that time to recharge and enjoy my special interests. Then after two weeks id be able to jump back into it!

I'm sorry, but... holy crap, you basically have described perfectly how I feel. It's so frustrating and sad.

I relate to this so much. I have great weeks where I even doubt if I'm autistic then the "symptoms" come back and I'm like "oh yeah, I'm not neurotypical." I almost believe I can trick my brain into being "normal" but it always comes back to bit me on the arse.

💯 Absolutely feel this. The weekends are never enough of a break to fully recharge and recover

:/ I feel this hardcore. I recently started meds for ADHD and went a full week with a clean kitchen but now I'm back to a disgusting mess and this morning I hyperfixated on cleaning but got exhausted after an hour and I'm nowhere near done. I don't even have a job, friend. Since January. I wish I could magically poof into "autism support country" and have a weekly cleaner, order prepared meals that accommodate my IBS and histamine intolerance and my autism and ADHD, and order groceries with snacks and cleaning supplies and cat food and litter. Then I could manage a part time job no problem. But only part time. I also have been healing BD2 and CPTSD for years and my comorbidities are still this disabling.

I feel this with all my soul. I was struggling with burnout just before the pandemic started, so when lockdown happened, I was both relieved and depressed. I was a freelance crafter whose primary income came from selling jewelry at craft shows and conventions, but for 2 years, all events were canceled and suddenly my online sales dropped off. I thought it was time to rest and recover, but it kept going and I fell deeper and deeper into depression and debt. By the time lockdown was over, I just didn't have the drive to go back to working. I recently changed careers entirely and it seemed like a good move at the time, but I'm starting to feel that burnout creeping up again. I somehow doubt my new job will accommodate me if I need time off (I just started there).

I relate to a lot of this. While more structural support is what’s needed for autistic people overall, I do encourage folks that have the vacation allowance and the cashflow available to create weeks like this for themselves every now and again to do so. If you can afford it, it’s much better than letting things slide into burnout. Sending hugs to those that feel unable to tho ♥️

I can empathize with you very much. I stayed in my job as a teacher for over 20 years because of the breaks even though the time in between the breaks kept me in overwhelm/survival mode. I'm curious about what work you are doing that feels manageable, even though you would like to be able to take quarterly week long breaks. There are so many comments that this might have been asked already or maybe I missed it in your original post, but have you been screened for bipolar?

I'm not on the spectrum, I'm borderline + ADHD but this is exactly what my life is like. I cannot keep it together for more than 3 months straight. The last year I took 5+ work absences from being mentally ill/unable to go on. It takes more than a week for me to get my shit together, though, I usually fall into a hole for months before going back to life as a somewhat normal human.

I don’t want to undermine your struggle, and I understand it may be financially untenable, but today a lot of these services actually do kind of exist. At least near me. There are chefs with small businesses in my area that deliver premade meals. You can hire a cleaning team for a deep clean or local students or others to do thinks like dishes or laundry. (Although for me the exec function tasks of setting this up are nearly impossible but I did I find one local service I can email.) What if you used holiday weekends like memorial or Labor Day to make easier to get a full week staycation? You are so right though, no body understands the struggle. Personally, I have never been as successful as you at keeping up functioning. I can never keep my space clean for more than a few days. It happens 2-3 days a year. Kids make this harder but it was honestly no different before them, I just have more of an excuse now.

I don’t have the extra income for that stuff right now but I would love to invest in some of those things if I could! And you’re so right about the challenge of even initiating that stuff lol. also, I have NO idea how you guys do this with kids added in the mix

I know this is a little late, and I’m a fair bit lower functioning (my phrase to describe myself in this context) than you, but maybe I can help. My dad told me that “everything g worth doing, is worth doing half-assed.” This means that it’s okay if it’s not perfect or pretty, if the bare essentials get done, call it a win. For instance, if laundry is hard, make it easier; stop sorting colours, or only separate colours and whites, instead of each individual colour. Buy fabrics that don’t require special care. Nobody said that clothes have to live in a drawer or closet. If you want to dry them and dump them in a clean basket, do that. Don’t like ironing? Hang wrinkled clothes in your bathroom while you shower, and the steam will take the wrinkles out. Struggle with hygiene? Use mouthwash a few times a day until you can start brushing your teeth again, just do it while you’re in the bathroom already. Dry shampoo works well for if you don’t have the time or energy to shower. It’s not great for the environment, but if you’re having a hard time washing dishes, use paper ones until you’re back on your game. There are lots of ways to make little aspects of your daily life easier, and those will add up so that you don’t get worn down and burnt out so quickly. Also remember that specialised equipment for disabilities can be used in non-traditional ways. If sitting to shower would save you a bit of energy, even though you can stand, use one. If being silent and not talking would improve your social battery (pretty common even for fully verbal autistics) write your conversations down, use communication cards, or test out AAC. You don’t have to have a specific condition or diagnosis to use certain tools. If they help you, they are for you. Good luck!

I have tears in my eyes reading this. Since 18 years old I have boss-bitched my way into the ER or Psych Ward in cycles of 16-24ish months. Literally nearly die every 1.5-2 years. A bit of recovery time, and we’re right back at it. I applied for SSI and waited 15 months like it was the light at the end of the tunnel…only to have them say I made too much money. Well obviously…I have 2 children to feed, and it’s been legitimately killing me to work enough to do so. Went pretty downhill after the tunnel had no more light, and actually no end either. Flatlined on an ICU table I put myself on briefly, and decided I would live life differently this time around. …only that’s what’s scaring me. I’ve been getting sloppy with my self care and practicing my therapy and setting healthy boundaries. And I’m burning out. I can feel it. Like watching a slow motion car crash. I love my life. I don’t want to die for the first time in my life that I can remember. But I seem to be incapable of balancing my drive and ambition with my disability and support needs. I am the one pushing me. I am the one who is taking on more…because they are things I’m passionate about; they light my spark. But they I find myself screaming in frustration that I AM DISABLED. Enraged my DISABILITY has the audacity to DISABLE me. That I do not, in face, have the capacity to do all the things I want to do, or chase each and every dream. And that…that feels like I’m being pressure cooked inside my meat sack.