What do you need to live a good life as an autistic person?
I think, in some ways, the Lemmy autistic community is the most reasonable and balanced-perspective collective of ASD folks that I've found online so far. It might be the only one that I can really say I've found in my own experience.
Other spaces seem to get overtaken by obsession and negativity to an unhealthy degree. Which, of course, I understand but sad to see it drown out positive posts all-too-often. It's odd, because I figured it would require a lot of active moderating to achieve what we seem to have here.
Anyway, to the post topic.
I lived a life as a thoroughly miserable autistic person until I was 33, I'm 43 now. Once driven by a envious, misanthropic, self-toxic ego that was desperate to protect itself from pain and shame; I can understand how deeply entrenched your personality can become affected by negative patterns and to start from a position of very little effective supports. I now consider myself to be a pretty optimistic and resilient person. Context to understand my follwing thoughts.
What I need to live a good life:
- I need to take responsibility for changing what I can within myself
This is really fundamental, and pretty difficult depending on what your starting mindset is. It's true that a lot of the conditional aspects of life that give me difficulty are not my fault, but focusing on that to any significant degree will make it a barrier to self-change. In the simplest sense, blame of any kind is a blocker to taking responsibility and when my thoughts and words tell a story of blame (whether towards myself, others, the world) then I try to figure out how to use that story as a prompt to act responsibly.
- I need one person who understands me and believes in me
A person. More would be nice, maybe, but one is all I need. I realize that's still a pretty big hurdle given that practically all of us are living isolated kinds of realities, but its a numbers game. Do the work to meet other neurodivergent people in a way that might allow for a connection, expect nearly all of those interactions may be misses anyway. It doesn't have to be neurodivergent people, but from my perspective it's gonna save a lot of time. I never thought there was anyone in the world who was like me, part of what drove my misery, and finding someone similar and supportive helped me do difficult self-work and helped pick me up whenever failures and setbacks happened. A good fit in therapy can help here too, but thats its own journey to find the right person.
- I need to understand my specific autistic needs and limitations
I started my self-work from the position of being undiagnosed. I didn't really even begin to consider the possibility that I was autistic until the COVID pandemic, and I eventually got assessed in 2022. The pandemic really opened my eyes because all of the social changes that came about in society (lockdown, physical distancing, wearing masks, etc) came as a massive relief to my day-to-day instead as a painful imposition to endure. That offered me a lot of clues to investigate and led me to understand how my social and environmental needs are very different from the norm, effectivley matching the autistic template. Really, for the first time I could believe there was a framework and others out there with a shared kind of experience where understanding myself could be achieved. I think this is ongoing work for me, to understand myself and others like me, especially because I lived so much of my life trying to fit the neurotypical culture and behaviour template. When you don't know you're autistic, there's a high risk of trying to mask as neurotypical beyond your capacity to do so. The burnout from that can be catastrophic and life-changing, but luckily I was able to draw upon items #1 and #2 from this list to heal and remake myself into a healthy person instead of it driving me the other way into (probably) my own end.
- I need to accept that I am autistic
Again, fighting my societal programming here. I expect myself to easily be able to do a lot of things that are commonly in reach for most people but the list of things that I forgive myself for is growing. That doesn't mean I abdicate my responsibilty to try or to work on those things, but understanding that there is a different path, a different level of support required, and a different definition of success for those things lets me take responsibility for them. It also helps me do the work of forgiveness more broadly. I forgive myself for the things that are totally out of my control, forgive others for their misjudgements and unfair expectaions, forgive myself for when I feel the old feelings again that once held me back.
- I need to behave according to my actual values and needs
Figuring out what these are and putting them into practice is what taking responsibility looks like. Keeping a reflective and honest eye on myself to ensure that I'm not falling into the complacency of self-delusion that this kind of work should ever end. It's easy to do that. To make significant milestone accomplishments that lead you to rest for too long, satisfied that becoming a relatively better person than you were is enough to carry you forwards indefinitely. No, I've learned that leads to a backslide. To be a better person, you must resist the idea that you are one and always work to become one... whatever that may look like, in all areas of life.
To wrap up this post...
Okay, so thats my thoughts on what I need for a good life. Of course there are specific actions that I take to make this a reality. Those actions are evidence of me taking responsibility and fulfilling my values and needs and, if you are starting from a place of negative blackhole self-esteem, doing so can bring you a healthy self and way of being in a world that seems to naturally discourage that for you.
I hope you are having a good day today.
34 replies
Im undiagnosed.
Honestly that was probably the biggest thing for me. When I realised that I'm allowed to be uncomfortable with a situation and remove myself from it, or to voice my needs.
Sometimes people will ask something of me that makes my whole body tense up. Old me would ignore that and push through it. Nowadays, I acknowledge my own discomfort.
The funny thing is, there's almost always another path that works out better for everybody. I was sacrificing myself for no good reason
Thanks for adding your thoughts,
Yeah, agree more people is nice. For me (not everyone) that's a want, and the actual need is just one. I know what its like to have none.
Sort of agree with bullet two.. but I'd say it can benefit me when I stand to be a little uncomfortable. To some degree, how much others make me unhappy is my own world to control and properly practicing that can make me less bothered in the long run.
And for three.. yes, when I have a receptive audience for that, which has not been often. It's also a skill that I'm working on too, where I've found my clarifying context can do more damage than realizing and apologizing for how I come off. I think I'm geting a little better at finding a blanace here, but still working on it.
Special interests!
My days are good when I have something to obsess over. Could be a TV show, videogame, some sort of project around the house - just anything I can look forward to doing. I've learned to accept the slump that comes when I've burned out or completed whatever it was that I was hooked on, give myself a couple days to grieve, then start looking for the next thing to fixate on.
To be clear this isn't something that's an addiction. I may go days without finding the time to partake but I think about it even when I'm not doing it.
Yes! Thanks for mentioning this. It gives you so much back :)
I will say this falls under the specific autistic needs for me that I've learned and so I invest energy into my hobbies quite a bit more intentionally now instead of worrying and ruminating over social interactions.
I'm gonna go work on my self-hosting setup for a bit, now. Thanks again for the thought!
This might be highly specific, but the ability to follow my moral compass. Like many others with autism, I have a strong sense of justice, and hate lying. Situations where I'm forced to lie while causing harm are the worst for my soul; it feels like I'm swallowing poison.
I had to accept that the world isn't designed for this mindset, though. Honesty is often punished incredibly harshly, rather than rewarded. But it's a sacrifice I've chosen to take time and time again. I've decided it's important enough to me, while acknowledging the very real downsides. Making it a deliberate choice was surprisingly helpful for my mental health.
In general I did spend a long, long time meditating on how unfair life is and how I don't fit into society. How badly others treat me or hurt me.
There's hundreds to thousands of small and unique frictions that makes functioning in modern life hell for those with autism. I think this was also an important step, though. Acknowledging and accepting these frictions and limitations made me feel free and more happy with my life. Compared to before where everything just felt difficult and confusing. Bringing things to truth and understanding was significant.
I can't afford a formal diagnosis or treatment. It costs $4,000 here in Australia for an adult diagnosis, before even starting treatment. I did see a psychiatrist informally for much cheaper, and they said I very likely have it, which is good enough for me. Otherwise it's been a self-led journey.
Yes, I agree with this too and it is also my way. Expecting and accepting the social consequences of making people unconfortable is a very important skill to carry folks like us though. I think it's possible to balance indifference with the understanding that you walk a challenging and underappreciated path through life and forgiveness is a powerful tool to wield in letting go.
Finding a way to be on board with all of that is freedom.
Yeah, most of my life was 100% caring about others; 0% cares about myself. If anything I had the opposite problem of indifference, way too much empathy. It's important to find a balance; it's not healthy in either extreme.
Biggest lesson I learnt is that being rude or imposing on others isn't necessarily bad or evil… sometimes it's actually the right thing to do. Kindness isn't equal to acquiescence, and you are also deserving of kindness. People can take you for granted and cause you harm, while you quietly martyr yourself for no benefit. Be selective on what you choose to spend yourself on.
You probably know all this already ~ just writing it out for anyone else reading
:)Yes to all of this. Thanks for sharing.
I need fucking money. So many autistic people, even with educations, are unemployed or underemployed.
Sorry if you find my impending homelessness negative. Good luck in forming a club of winners of the autistic lottery, people's whose autism & interests makes them worthwhile employees.
Working overnight has solved a lot of my issues with working. Little to no people to bother you, enough work to stay busy until the shift is over, can listen to my music and ignore people when it's not work relevant
Security guard?
Honestly, I hate second and third shift since i cannot relax at all before a work shift. I like to do it first thing, then I can relax when I get home. If the sun wasn't an issue, it'd be fine, but I'm sure i'd get slammed with depression trying a night shift.
If you can handle the early morning shifts (6am to 3pm most often) then warehouse work is a strong contender for decent ND work.
If you're aware of safe lifting and manual handling, and have the type of tism that lets you do repetitive manual tasks after a bit of practice, then working in the shipping and receiving section of a warehouse becomes a gym that you get paid for.
Not to mention how much higher the chances of finding other ND people to become friends with is, when working in a warehouse.
It's not a capital C career, but it pays well enough to keep the lights on, and if you push for it, they might even put you on a forklift course (skills mean bills)
I really hope the situation improves for you in the short and long term though.
Yeah, and I expect some responses like this. I'm sorry you're having a tough time, financially. I expect to be out of work very soon due to circumstances beyond my control and to be similarly finding myself threatened with the difficulties that go with that (once again, unfortunately).
None of what I'm suggesting requires money and can lighten your overall load in life as an autistic person.
Yes, I understand.
Outside of employment, I'm actually better than I ever have been. I used to have a bipolar diagnosis and disability. Realizing what was really going on and flipping the double-bird to the mental health industry that had exclusively caused harm was very freeing.
I'd be pretty happy with my life and my apartment and my dog and my activities, but I am continually haunted by work being hell, and it's hard to feel good about myself when I'm actively treated as less than I am by society when I am forced to interact with it at work, when the entirety of my life is consumed by a question that seemingly has no answer.
So all I really need is money.
Yeah. Totally get it. I'm tring to work out how to self-actualize income to get out of this cycle of temporary tolerance I recieve in the work place(s).. and I'm feeling really overwhelmed by all that. On the other hand, I feel like the minimizing expenses is going pretty good so that will help a tiny bit.
I came to autism by way of misdiagnosed bipolar as well; it is a very common and well-documented pipeline from what I've learned (Tony Atwood, The Complete Guide to Asperger's Syndrome). Feels good to cast off that improrper label and the awful medication that goes with it. Figuring out how to be an autistic person let me get away from all that.
You're probably smarter than I was. It took me close to 20 years to realize that the drugs weren't doing anything to help, and when my psychiatrist agreed they weren't working and they were not working so much, she thought I should do a trial of ECT. When I asked her, well, if they're not working, I should go off them, right? She said, no, of course not!
What's your story?
I was on lithum for 10 years before it started harming my kidneys to the point where I needed to come off it. I think that it did have some benefits when I was otherwise in an extreme bad mental health, but only in the sense that it muted the extreme emotions I might feel.
I originally went seeking help in my early twenties for what I now understand to be autistic meltdowns. When I would lose it, the consequences were devastating and I could not seem to figure out how to protect myself from them happening or from the blowback.
Psychiatry started by validating the suspected BPD as not exactly fitting type 1 or 2.. "Not-otherwise Specified" was the category I was given. When my pdoc left, the new one disqualified BPD and suggested "Generalized Anxiety with episodes of Acute Extreme Anxiety", I stuck with him until he retired. He eventually accepted my independently-sought assessment to ASD, as it was a much better fit for my life circumstances and also accounted for the challenges that I was seeing him for. He admitted he lacked the knowledge or background to qualify that himself or suggest it.
The medical system did not lead me where I needed to go, so I am glad that I did more on my own to get to where I am. Sorry to hear that your psychiatrist sucks.
Symptom management, classic psychiatry. That must have been a while ago, because these days there's a lot more drugs they could have put you on.
I also relate to anxiety pretty heavily as a diagnosis, it's one of the things I was a bit surprised was never really addressed or treated, but in the context of autism, it's clear where the anxiety came from.
I think it's pretty clear that the medical model of treatment can be a very serious trap for autistic people.
Well put. Yeah, it's really full of holes, wrong-turns and dead-ends.
There was a carosel of other meds involved, especially after lithium. I had to self-drive my way off that ride, supported by my pdoc once he accepted the results of my ASD assesment and diagnosis.
Once I learned to operate well enough as autistic, I stopped needing treatment for the underlying issues that suggested they were appropriate meds.
For me:
Probably more I can't think of
Diagnosed too many years ago here, as I’d say it’s pretty simple:
Just be true.
Whatever mood you’re in, whatever feeling you’re feeling, just make sure it’s true. Make sure it’s you. I believe that the closer our inner person is to who we are on the outside, and vice-verse, the more balanced we are. And in balance is truth. We are our yin and our yang inward, outward, separate and combined.
And I think this is true for all people. Not just those of us with superpowers. 😉
Yes, the be yourself advice is very impoartant to follow through with. It is a bigger challenge for those of us who live in a seemingly universal disapproval of others; even so, it becomes even more important to live according to your own way.
I was lucky to start the process of not caring what others think fairly early on. It’s liberating. People will like you, love you, dislike you and hate you- all without any input or interference on your end. So there’s little logic in efforts made worrying about it.
It comes with the side bonus of always knowing that those that are around you- want to be, and those that aren’t- don’t make much of a difference at all.
Love and be loved. Everything else works itself out in the mix.
Thank you for sharing your experiences and thoughts! I agree that we need a lot more realistic positivity in these communities - hearing about experiences like yours gives hope that change is possible and we can build resilience by finding ways to acceot ourselves and improve or even enjoy our ND lives. Resilience is also something we need for collective action. Although I don't think the solution to the damage and harm capitalism causes is that everyone personally fixes themselves first (you didn't say so, just acknowledging the idea in our culture that internal work and therapy is the key to everything).
I'm currently processing these same things in my own life. I feel so relieved after figuring out I need to change the way I react to and think about things - and it actually is the key to shifting everything that's burdening me. Shame has been such a deep-rooted and significant factor that's shadowing my life that re-programming beliefs and thought patterns takes such a long time, but it does pay off. I was in that negativity hole a long time, blaming others or situations for my misery but not taking much action to change things. Experiencing burnout was an important factor for me in realizing I can't keep on doing things the way I've done so far. Finding right medication has played a significant role as well. I suppose sometimes the change of perspective comes by changing the brain chemistry.
I feel sad about losing people in my life though. It shows me how few balanced relationships I have and how much energy I've used to keep up relationships to unhealthy people. I hope one day I'll be part of a community.
Thanks for your comment. It sounds like we are on a similar path. I also feel the same about my relationships, its sad to see them almost completely disappear with everyone and finding new people that actually fit my life properly may not be something I can expect to happen quickly even if I put a lot of energy into it.
Chocolate milk
To have been born wealthy...lol...but damn it would have made everything so much easier.
The thing that has been the root cause of most of my anxiety and meltdowns has been neurotypical working condition expectations. I could have been a much more productive person if I could have been able to take breaks when needed rather than realizing neurotypical people take breaks while pretending to work, not be told to "push past my limits" and taken that literally and pushed myself to meltdowns and injuries, had the ability to get an education without also having to work full time, been able to do work that took advantage the strengths of Autism and ADHD rather than being forced to do tedious things or customer facing things that typically are easy for NTs, just boring, but extremely draining and anxiety inducing for me.
Thanks, I understand a lot of this. Is this really a past-tense situation for you, or do you now have any handle on these things for yourself? I realize the wealth-dependent aspects are probably a no.
I'm in a constant state of burnout, but I have a comfortable amount of income now so I have stable shelter and I'm not dealing with food insecurity anymore. A couple of decades of strong antianxiety and antidepressant medications helped but it made me super numb and just masked everything because it was treating the wrong things. But even then it was really difficult and I lost jobs over attendance even though my performance and productivity was way better than most even with missing extra days Figuring out I had ADHD and Autism several years back and getting made a huge difference, but it's still a real struggle. All my PTO goes to "sick days" so I never get vacations, but I have a home and food and necessities for now. I'm sure it won't last, but I'll survive. If I had wealth, I could maybe own my own business and be as productive and do work without the nonsense work schedules and take some time off to keep out of the burnout stage. I doubt retirement is possible the way the current system is set up in the US, but I've bee trying to set aside what I can so when my age makes it impossible to push myself this hard I won't end up on the street again. But I doubt it will last enough years. We'll just see how it goes.
I wish you good health and luck to make it all work. It is hard; please look after yourself as well.
Hey, I'm at the point of discovery and curently relate to point 4 and 5 a lot.
Your words really help me.
So it's basically program as usual for me, trying to keep my mind positive, comtimuosly working on myself, but with the difference that I have the key now and less shame and guilt.
Sounds about right!
Aside from basic needs, the ability to live in my own space, the ability to spend as much time on main interests as possible, and a few friends to interact with online. Everything else is a bonus. To be honest I have most of this now, the only problem is my job is not related to my actual interest so I have to cope with that stressor.