u/ForgiveMe_ImSorry

There will be a TL;DR at the bottom cuz I have a tendency to type a lot and I know a lot of ppl don’t want to read a lot, but please I need some help/guidance. (I did spend like 2 hours writing this, so if you have the energy/capacity to read it fully that would be cool)

So I have not been formally diagnosed with autism, however I know for sure I have it (you’ll read why below). I am 29F, high masking.

So my brother has diagnosed autism, he was diagnosed early (before puberty) and received help and coaching. We both have ADHD diagnoses, but I wasn’t diagnosed until the doctor who diagnosed my brother already diagnosed him.

I feel like I have been misdiagnosed with PTSD, depression, bipolar disorder, and BPD, it’s like they are constantly guessing. I don’t like how flimsy diagnosing ppl is, it really feels like guesswork.
I don’t feel traumatized and I don’t think I experienced anything super traumatizing. But got diagnosed with PTSD cuz I am hypervigilant, have an exaggerated startle response, and can analyze people’s moods and recognize patterns that don’t fit their baselines. I feel like I was misdiagnosed with depression and bipolar disorder cuz I have moments of high energy, which is followed by days of fatigue and having a hard time getting out of bed and stuff like that, and I think they just saw mood swings and did that diagnosis. However, fatigue and energy are directly linked to my menstrual cycle: pre-luteal phase I have more energy and luteal phase I have less. I react strongly to my hormones, feel them deeply, and they affect me deeply. During my luteal phase I have a harder time filtering out stimulus and get more overwhelmed.

For a very long time I’ve felt like my level of fatigue is not normal for my age. During extreme episodes of fatigue moving my body is hard like I have very heavy weights all over me (specifically my limbs), and I want to do things but physically feel like I’m in “energy saving mode” and as I’ve gotten older I’ve noticed a direct link between a overstimulating day being followed by “energy saving mode” and things like grief, big life changes, big social events, etc drain me a lot, and during my luteal phase it’s worse.

Things that I thought were normal or just my personality have turned out to be markers for autism. A lot of examples:
- I don’t just “know” how people are feeling, I have to use context, what they are saying, their facial expressions, their tone of voice, their body language, etc to figure it out. And most of this has come naturally after doing it for so long and I only really notice it when I encounter “errors”, like say someone is using a sarcastic tone (but it’s not super exaggerated) and what they are saying is plausibly genuine I need clarification (e.g. I say “sometimes I have a hard time focusing” and the person says “really? I couldn’t tell” with a sarcastic tone, I need to take into account this person’s personality, their tone, what they are saying, etc and decide if they are being sarcastic or not, and if I’m not totally sure I’ll just ask “is that sarcasm?”). And sometimes when facial expressions don’t line up I’m confused, the best example that comes to mind is watching Breaking Bad, sometimes when Skylar is crying she kinda looks like she’s smiling cuz the corners of her mouth are upturned, and I got confused and really have to break down the scene, the plot, the character, the context, what she’s saying, the distress, the tears. I don’t understand how ppl just “know” without working through data, I wonder if it’s like how I feel when there aren’t “errors”.
- I get internal and external sensory overstimulation. I feel things strongly and deeply internally, and externally is a little easier unless it’s a lot or during my luteal phase. So a really good example of external overstimulation is loud noises, like a fire alarm. What I feel is a build up in my chest, sharp pain in my ears, a harder time thinking/concentrating, panic, and an urge to run away. In public I will try to bear through it or get away from it without being obviously distressed, if I bear through it longer the melt down when I’m able to finally let it out is worse. In private, or around ppl I’m comfortable with, I put my fingers in my ears, run around like I’m trying to get away from it but also make it stop, snap at people, scream, cry, kick things and throw things and self soothe by rocking back and forth or hugging myself or hitting myself (usually in the head), and when I do that my melt down after the fact isn’t as bad or as long but I remain a little on edge like my irritability/anxiety meter is almost maxed out. A good example of internal overstimulation is strong emotions, and they are worse when I cannot identify them or what’s causing them, and there’s an urgent need to figure it out in order to find the best approach to making it go away so I can return to baseline. Also I’ve gotten very good at recognizing different chemicals/hormones in my body and what produces them, like I can tell when my brain is releasing dopamine (really awesome fight scenes in anime release dopamine, I love it), I feel endorphins after a huge cry and they feel floaty and a little sleepy and kind of like a gentle buzzing in my chest, etc etc (I know I don’t have to explain them all for you to get the point, but I get excited by my ability to recognize things and I like having labels for things).
- I have self regulating/soothing behaviors that help a lot. I like deep pressure, I like to squeeze myself like a hug, I like to press my hands into my face really hard, I like my weighted blanket, sometimes putting something heavy on my chest or stomach feels good. Rocking is very soothing, I have always immensely liked swings, it feels good, it feels how I would imagine screaming into a pillow feels for people. I pet myself, I pet my legs or the back of my head or my arms, it’s calming. Humming helps me a lot, but not humming a song, just one note with different rates of exhale, the more dysregulated I arm the more aggressive the hum sounds. I vocal stim too, and I’ve been getting a little more comfortable doing that around ppl, it feels like it releases extra energy. I use self talk a lot, but that’s more for like brain stuff rather than nervous system/in my body stuff. Also when I am EXTREMELY overwhelmed I hit myself or punch myself or cut myself (as I’ve gotten older I engage in cutting less), and drinking makes this worse, I become more strongly upset and am more likely to hit/punch/cut myself, these behaviors feel immediately grounding and like opening a relief valve on an extreme overwhelm usually from an internal overstimulation. But some external overstimulation can cause this too— again, it’s usually loud noises and it’s worse if they are sudden, abrupt loud noises or piercing noises like an emergency whistle.
- physical touch is either anxiety provoking or deeply regulating. If it’s someone idk well I don’t like being touched, sometimes if I’m already overwhelmed being touched makes it worse, I’d much rather ask for touch if I’m dysregulated, don’t try to touch me or hold me during a meltdown unless I ask for it, I think my dad is the only one I’m ok with hugging me without asking first cuz he moves slowly and guides me towards a hug rather than comes at me with a hug and squeezes super hard, and usually after like 10-30 seconds of a dad hug when I’m really upset I can feel my body relax and go kind of limp. And when I’m baseline or just slightly dysregulated touch is very helpful, like cuddling or hugging or elbow touching, stuff like that. But if i don’t know you well and I’m baseline or slightly dysregulated, someone sitting too close to me or touching me makes me internally panic.

I’ve been doing my own research and have found that unmasking can lower burnout fatigue, but I feel uncomfortable when I let myself just do things. Sometimes I feel like I’m faking it or exaggerating or putting on a performance, even when I am alone. So I don’t unmask often. I’m also afraid if I unmask I’ll lose the ability to mask and I don’t want to be perceived as weird or different, cuz I judge ppl for “acting autistic” so I’m afraid other ppl are going to judge me, and I’m very afraid of being annoying or rude or weird in a bad way.
It’s also hard for me to hold a job kinda, I think it would be easier if I could work for 1-4 hours and then break for an hour in a comfortable, familiar spot (like home) and then go back to work. I want a full time job, but also my own personal time. Idk.

I also have struggled with alcohol abuse disorder, I’ve found that alcohol kind of turns the volume knob down on internal and external stimuli in small doses, but I always end up becoming a chronic everyday user and it gets worse and heavier over time and will eventually result in hospitalization. So I can’t drink anymore, it’s not a good way to solve things, and it makes somethings worse. Like it’s easier to unmask and not get overwhelmed by social settings or stimuli, but internal overwhelm gets worse with heavier drinking and with decreased inhibitions I cope poorly like hurting myself, hurting others (not the same way I hurt myself, it’s more likely I’ll shove somebody away from me if they are deregulating, and I identify ppl as dangers/threats quicker and lump the person in with their behavior and instead of asking them to stop I will try to make them stop), or becoming suicidal— it’s like knee-jerk reactions become the go-to, rather than taking into account social norms and healthy coping. Also when I stop drinking I’m often more dysregulated and takes awhile to return to baseline. So no more drinking. Ever.

I honestly just want to be able to navigate life better, not deal with chronic fatigue and overwhelm, be able to function like a “normal person”. I find myself getting very sad and crying, or very angry about how inefficient my nervous system is for the world I live in. I just don’t want to struggle anymore. I want to have the energy to do things I want to do and am expected to do. I want to live normally without all these problems inside of me, but when I try to live normally I end up in energy saving mode.

I’ve thought about getting an autism coach, or maybe starting SSRI’s during my luteal phase. But I’m afraid there is just no way to feel better and also make it through life. Like what if I can’t work like a normal person and I can’t afford to live right.

I’m just overwhelmed and frustrated and sad and I don’t feel good and I hate that I don’t feel good and I would like to fix it.

TL;DR- I have autism, I get overwhelmed and overstimulated very easily by internal and external stimuli which leads to chronic fatigue. And I need some advice on how to not be so overwhelmed, which by proxy should also reduce my chronic fatigue. I’d like to know how to function like a normal person does.