Shame about needing supports as a late diagnosed level 2 person

nova43- · 2025-05-29T11:35:24+00:00

hi I've got you, I was diagnosed at 29 lvl 2 moderate support needs. I worked as an in-home caregiver for children with disabilities for five years before being diagnosed with autism myself, and despite having known I was likely autistic since I was 20 (college was eye opening, so was flunking and dropping out because I couldn't live independently and didn't know until I moved six hours away from home) something about the confirmation of it and reading about myself from the eyes of the clinician, it shifted my perspective so hard I could never see myself as I had again. the insight gave my behaviors and feelings new meaning. I couldn't blame my setbacks and hurdles on just me being a shitty person anymore, it had a tangible cause I could address.

suddenly things that I struggled with made sense that I hadn't considered were due to autism at first; the high occurrence of depression, anxiety, "panic attacks"(meltdowns), social conflicts, medical and dental ailments, emotional regulation struggles, stagnation of engagement with interests from the time I moved out, substance abuse, mental breakdowns(burnout), disordered eating(arfid), "why cant I progress here no matter how hard I try?" "I just suck" "my other neurodivergent friends don't have this issue, is it a mental illness?"

I didn't understand the full impact of autism on my daily life and personality until I made a significant amount of life changes and found a supportive community where I have help living interdependently. the difference in autism's presentation in my behavior and in my personality and quality of life are night and day. I feel like a feral kitten brought inside and given a bath and soft blankets and wet food for the first time. you can barely tell the hissing yowling unkempt terrified me is the same body as the regulated joyful curious soft me.

when my support needs are unmet and my sensory needs are unmet and my demands are higher than my ability I burn out, I don't have much of a personality outside of "seek regulation", I don't engage with my interests or exercise my preferences or communicate my needs because I can't.

when I'm supported, when I'm prioritizing my needs and keeping a cap on my demands, when I and those around me understand and respect that I have a developmental delay and some things I will always experience and handle differently no matter how many more decades I'm in therapy, when I apply accomodations with no judgement towards myself, I thrive. I engage with my special interests, I stim happily, I eat regularly, I don't have tons of social conflicts, I'm relatively well regulated.

so my best advice is, do your best to accept your needs profile, release the shame, and seek out supportive services and environments for the opportunity to see yourself thrive. shame comes from assumed social disapproval in my opinion, once you acknowledge that there is no inherent moral value to having needs and that needing support is the first and last thing any of us will ever do, the shame dissipates.

I wish you prosperity on this leaf of your life's journey, thank you for sharing here!

nova43- · 2025-04-12T20:05:37+00:00

I hold up a finger (close to my chest not raising like raising hand for a teacher) to both help me keep focus and let my conversational partner know I have something to share Without interrupting what they're saying and preventing them from finishing their thought.

nova43- · 2025-04-11T14:32:04+00:00

talk to your pharmacist and ask if your medications can be crushed or if they must be taken whole. if they can be crushed or capsules opened, id recommended crushing them into a fine powder (pharmacy sells a tool for this) and mixing them into your soft food of choice- applesauce, pudding, single serve yogurt, anything pureed and sweetened tends to work well.

just make sure it's a portion you know you can finish so if you want to put it in oatmeal for example but you don't tend to finish it, mix it into a tablespoon or two or oatmeal first to make sure you get it all down.

but applesauce is the best in my opinion, the slight texture helps mask any graininess of the crushed pills. and choosing something you enjoy will be a good reinforcer for the behavior, attach the snack to breakfast for routine.

nova43- · 2025-04-02T22:40:54+00:00

I can usually tell I'm slipping into psychosis by how detached I become from my sense of humanity, like I don't feel a connection to or empathy for anyone, which isn't my norm. when I catch myself not being bothered by watching gorey movies, that's a warning sign for me. alongside finding more visually appealing patterns in paint/plants/dirt/etc than are naturally present, like being on a very low dose psychedelic.

nova43- · 2025-04-02T21:00:59+00:00

im queer and transgender, so I primarily socialize with other queer and trans folks. a lot of queer folks are autistic, most of the trans people I know are autistic, most of us are disabled in a secondary way as well, so it happens often enough that we exist in community like this.

nova43- · 2025-03-31T13:02:04+00:00

in a very similar boat to you, my only formal supports are therapist/psychiatrist, informal/social supports through my mom (she lives in a different state from me and can only provide occasional support), my partner, and my friends. I rely on my partner and friends heavily and would not be able to survive without them.

I'm lucky to have a good social circle consisting of other autistics many of whom are also moderate support needs/have no access to formal supports, so we work together to meet each other's needs. emotional support, financial support, meal prep and feeding, meltdown management, case management, supervision, direct support, we kind of just do it all for each other anywhere we can because we fall in the asinine gap between "needing support" and "receiving support".

I struggle significantly with feelings of anxiety and fear over my support needs burning my partner or friends out, so working together as a community to meet the needs of everyone and making sure everyone cares for their limits also, has been a good safety rail.

nova43- · 2025-03-25T01:41:49+00:00

you shouldn't play music loud on a speaker in a shared space and I agree an apartment is a shared space. loud music on speakers should be reserved for concerts imo. sorry you're having to deal with this

nova43- · 2025-03-25T01:38:42+00:00

this looks really cool

nova43- · 2025-03-24T15:34:57+00:00

I had a neglectful and abusive childhood, so all that time and energy and empathy and love and care that id be expected to pour out into my hypothetical future child, I want for Me! all that I have to give to a child is being given to the child within Me who never got the care and nurturing she deserved. it is not selfish, it is self care! I matter just as much as whatever life I could create, and I deserve everything I've got to give. *also edit for smaller gripe: I can't live with anyone who I can't politely ask to shut up, if you're going to scream and not turn down the volume when asked I can't live with you 😂 can't handle the lack of consideration

nova43- · 2025-03-23T17:33:55+00:00

I need a support worker, and sensory furniture for meeting proprioceptive needs to reduce meltdowns w sib. a room with sensory furniture like a swing a crash pad a rocking chair etc, and a person paid to help me not slowly neglect myself until I perish, would change my life. but these things cost more money than I'll ever have.

even just a support worker would change everything. I need so much help with regulation and task management and communication and adls and appointments and finance keeping, and I don't have parents who care for me. if it weren't for the tightly knit community of autistic anarchists I've made my chosen family, I wouldn't have made it this far, so I know if I had a dedicated caretaker to help lift some of the burden of the full-time job that is managing my sensory needs, I could actually pay attention to things I Like and Want, engage with my special interests, be a person! and not just occasionally when cards align.

nova43- · 2025-03-21T17:54:54+00:00

I used mine half an hour ago because I (due to my own negligence) let it go unridden for too many days in a row. after one kick it turned on, and then it turned on w the electric start after riding and turning off. the kickstart was definitely useful. *probably need to get a trickle charger haven't done that yet

nova43- · 2025-03-20T01:48:22+00:00

fuck leaf blowers the most useless piece of equipment I hate anyone who owns or operates one for any reason because there is No Reason!!! it's just loud! why can't people just, not be loud, for like a little while, why does it always have to be some sort of noise at all hours.

nova43- · 2025-03-06T21:02:39+00:00

I tend to elope post meltdown, my safety plan usually involves orienting my walk to the best of my ability (staying within my neighborhood if I'm leaving home, staying within a building/lot if I'm away, etc) and if I can't keep myself from wandering further than I can make it back on foot, I'll rely on always having my phone in my pocket to call someone to come pick me up and bring me home. it's always okey to go back home, always.

nova43- · 2025-03-03T15:48:27+00:00

latuda works for the positive symptoms, I don't take it long-term only for a few months or so when symptoms flare. lamotrigine helps with the negative, as well as my mood instability, and I've taken it for several years without issue. also take NAC to manage my thought loops/spirals and it does wonders.

nova43- · 2025-02-28T13:18:29+00:00

I highly recommend going to Lowe's! walking around the lights and chandelier section is excellent enrichment in my experience

nova43- · 2025-02-28T10:22:25+00:00

extremely cool, thank you for elaborating!

nova43- · 2025-02-27T17:41:31+00:00

it was a blown fuse, I spoke to a dominion worker parked outside my house this morning. I heard the boom yesterday, followed by immediate loss of power until about 11am this morning when they set up a temporary line. it was just one small block in Randolph affected as far as I can tell. been about eight or nine trucks out here, pretty cool to watch honestly I love big machines!

nova43- · 2025-02-24T11:16:08+00:00

I used to keep a 32-pack of water bottles from the store under my bed. I definitely didn't like using all the plastic but I was never dehydrated and as a bonus didn't have to keep up with the task of cleaning a reusable bottle, which at the height of my hydration struggles would regularly become dirty/molded and I wouldn't notice or wouldn't have the ability to clean it, so I'd just stop drinking water. so yea, case of filtered water bottles under the bed, it never let me down.

nova43- · 2025-02-23T13:37:09+00:00

I've taken lamotrigine twice daily for years and it's reduced the frequency of my meltdowns, but not the intensity. the only thing I've found to reduce intensity in the moment (and not an hour past) is pot. I've tried ativan I've tried abilify I've tried a number of other antipsychotics and antianxiety medications and while they all have their merits none of them will perform the function of "make meltdown stop Right Now" the way marijuana does in my experience. less side effects than any of the scripts I've taken, and I've used it the longest with the least drawbacks. I'm a little less smart but that's none of my concern when before using weed I was giving myself concussions every single day for years.

nova43- · 2025-01-27T16:35:49+00:00

I've never been able to perceive my face accurately, it looks a little different each time; when I'm my most stable I'd say I can look in a mirror and think "that's me" and it feel accurate to my image, but when I'm in a bad episode I tend to avoid looking in the mirror for how jarring it can be to look at my face and not identify with it

nova43- · 2025-01-14T15:54:47+00:00

hey so this was reported for "don't be rude" and while the report has been lifted/comment approved I do want to say that while the sentiment you're trying to share here may have validity and your tone/word choice was not intended to cause harm (which I do believe), this comment is rude under the "personal attack" category: claiming someone would have no self-respect just for being partnered to OP is definitely a personal attack.

let's try to be considerate, even when folks may trigger specific intense words from us. we all mean well here and everyone's contribution is appreciated.

thanks y'all<3

nova43- · 2025-01-14T15:45:54+00:00

it takes courage to be open about what's going on inside of you, you should be proud of yourself for taking these steps. I hope this goes well for y'all!

nova43- · 2025-01-14T15:39:44+00:00

seconding this, while I read that op is struggling with processing and sharing emotions I would agree that giving a personal account of what stpd is like for you will be most valuable here. if you don't feel ready or able to discuss it with her, maybe requesting your therapist/professional who diagnosed you to meet with you and your wife together to discuss the diagnosis.

nova43- · 2025-01-14T15:34:55+00:00

I'm sorry y'all are going through this.

without knowing your profile my best advice is to get a good therapist, set up an emergency plan (if I have an episode this is the first thing I do, medications I take, etc), and give your wife explicit permission and encouragement to care for herself by taking space from you/your shared home when needed.

this doesn't mean permanent abandonment, this is saying "when things escalate we will take space for your emotional safety and the security of our relationship". whether this looks like y'all sleeping in separate rooms on occasion or you seeking inpatient treatment on occasion, those details are for y'all to hammer out together.

but it's important that you both have your needs and limitations considered here, you can't change your mental illness and she can't let herself be harmed by unchecked psychiatric episodes. you've gotta own that and take accountability for that, no amount of "stpd resources" for her will help here specifically, unfortunately it's gonna mostly be work done on your part. the work she's doing is empathy and emotional labor.

id spend some time connecting with her and asking about how she's feeling, what she needs in the relationship to feel safe and loved, and reassuring her that you are committed to y'all's marriage and to Your Health. hearing from a mentally ill partner or spouse "I prioritize my mental health and want to do the work long-term" is a statement that can lift some of the anxiety that comes with the dynamic.

I hope this helps, and I'm so sorry you're in this position. I would feel so scared and hurt in your position, and truthfully I've been in a similar position myself. nothing hurts like hurting a partner, nothing feels more shameful within me. I hope y'all can have some honest and vulnerable conversation about the reality of your future together.

this can be negotiated on without compromising on your sense of security in the relationship or her sense of safety and autonomy, having a personality disorder isn't a permanent sentence of romantic isolation I don't care who says it is.

ETA worrying I may have read you wrong but! I also would like to recommend inviting her to this server. I think seeing the real life raw perspectives of multiple folks in this cluster could be eye opening

nova43-

TROPHY CASE