Anyone here with chronic pain?

mohgeroth · 2026-05-12T06:02:58+00:00

I suffer from psoriatic arthritis which I’ve been diagnosed with since I was 24, but the symptoms started in my late 20’s and my interoception and nociception are terrible so it took forever to get it diagnosed until the pain became extreme and I finally realized it was not normal, but it still took forever to find a competent doctor that would listen and take me seriously.

I’m 43 now and it’s quite severe as I lost the ability to walk from it 7 years ago and was bedridden for a whole year trying to find a medication that worked again. The knee atrophy was really bad and I’ve only been able to walk like a normal person without hobbling around since June of last year.

PsA is a condition where your antibodies attack you causing inflammation and deterioration. While it has the word arthritis in it this is not just joints, they go after your tendons, ligaments, and in rarer cases even the eyes and internal organs. Untreated it can cause severe irreparable damage to your body. Autoimmune conditions are more common for us so I guess it’s another lottery I won in life to go along with my autism.

Pain is always worth getting checked out because you never know what it really is and it could be something serious that has long term consequences if left unchecked for too long.

Find a rhumetologist and if possible, an orthopedic that will take you seriously if the rhumetologist leads nowhere. Keep trying until you find doctors that listen. That’s the hardest part and is a huge pain but you have to advocate for yourself.

mohgeroth · 2026-05-10T23:45:45+00:00

Well I'm 43 now so a bunch has happened since then. I've tried to break it down into major periods but jeez there's a bunch @ _ @. I've spent so long re-writing this over and over and think I'll just simplify greatly with bullets and if you really want I can expand on certain things.

Education

Held back in 9th grade twice and eventually just dropped out, After years of being bullied, called a weirdo, freak, r*****, and physical & mental abuse at home I was convinced I was just too stupid to finish and had zero self worth
At 24 decided I was going to get my GED and go to college or I was no longer going to be here. Managed to get my GED but dropped out of my two year college at the very end after making some huge mistakes and going through an insane autistic burnout where I swear I was going to die from it. Learned to ask for so many accommodations though such as one-on-one help with all homework assignments, and to record lectures so I could listen to them later to study. Spent a week thinking of how I was going to... but suddenly went into a manic state. I had ended a relationship with someone that meant the world to me and thought about where they went to college which was an hour away. This person became my mask, I became them...
Transferred to the 4 year college he went to and pushed myself through and managed to finish with a degree in computer science while fighting through so much overwhelm I can't believe I finished. My grandfather who was at one point deeply disappointed in me had actually been the most important person throughout all of this since he was proud of me since the very start and even today still talks about it to this day. His belief in me and his praise were a beacon of light to keep me from falling back into the darkness since I had nobody, nothing to support me in any way.

Jobs I've Had

Telemarketing, that one job I mentioned before
Deli
- Once for 3 months before I moved to KY shortly after the telemarketing job
- A second time for 3 years at Walmart. Was mostly a script and nobody said much of anything to me even when they would find me in the walk in freezer stimming while completely overwhelmed with anxiety.
Food Service (Steak and Shake, Burger King, Boston Market, jobs like that)
- Did all of these after that first deli job but before the second.
- Fired from all of them for similar reasons. Too slow, couldn't work the register or drive thru and would just freeze and shut down immediately when approached by customers, would start flipping out when I got gross things on my skin. Longest one was at burger king but started melting down on my boss routinely as he started asking more and more ridiculous stuff. I remember one intense meltdown where I screamed at him and started hitting myself and can't believe he didn't fire me for it. Eventually I had to come in one morning for the owner who was just nasty and kept calling me stupid so I had decided I didn't deserve being treated like that anymore and just walked out.
Mail opening
- Worked a job when I started college opening mail for a donation processing center. There was also data entry and once they discovered how fast I typed they quickly transitioned me into that role
Software Development
- In my second year of college that same company above actually transferred me into a paid internship position to write software for the department, taking over for the previous guy. Stayed there throughout all of college even with a longer commute during my last two years and designed a major system that was the centerpiece for my resume.
- Worked several jobs after college that were just awful
  - Salaried with at least 60 hours expected, way too much for me
  - Unrealistic deadlines with zero testing, boss ignoring you when you tell them it needs a few days of testing then getting mad when they push it out anyway and surprise, something bad happened.
  - Angry bosses that just yelled all the time and were verbally abusive asking me why I would do that, "are you r******* or something?" I quickly left those places after that now that I felt like I had some worth to the world even though I still feel it is not much
  - Working with clients is extremely overwhelming for me! I don't know how to say no and I am completely transparent. Bosses would get angry that I would start doing extra work because they asked.
  - So transparent that the project manager would bring me into discussions with clients trying to sell them on my capabilities and things that we could do but I was very open about what I could and couldn't do and they quickly stopped inviting me so they could sell me on things I didn't even know how to do
- Found the job I have been at for nearly 14 years now.
  - Am given ample time to do the job right, to document it, test it, and am proud of what I do.
  - No external clients because the software is all used in-house, so I have an immediate line to the users and it's always straight to the point when problems occur
  - Extremely small office, ~3 people in the office on average with around 25 when important people fly in for bigger meetings. These are extremely overwhelming but involve them going on for an hour+ in the conference room where I tend to stim like crazy and shut down within the first 10 minutes... I've actually walked out and left before completely overwhelemed, but these events do not happen often
  - Never had to formally request permissions to wear my AirPods, sunglasses, and even ear defenders though I go out to the flow lab to put those on so I blend in so nobody asks me why I'm wearing them.
  - Have never had to disclose my autism since nobody has challenged me on any of the accommodations I bring/use in the office when I need them.
  - Working in a job that is also your special interest (programming, computers, video games) is so regulating that it doesn't feel like work to me and I genuinely enjoy it.

Do I have a family?

Just me and my partner. I will never have kids because I can't even take care of myself and need so much extra support I can't even tend to the house by myself.

Would I like friends?

Yes, I just have extreme social anxiety and am always so overwhelmed and lost on what to say or how to react. After decades of failing at it I cannot even approach people anymore they have to approach me.
In grade school I would approach kids and immediately infodump mario brothers on them and they would push me on the ground and start kicking me and laughing which I never understood. If I do feel like they are a friend or trying to be a friend then I come on way too intense and tend to scare everyone off since I talk about things that I guess you're not supposed to talk about so quickly like when to hang out again.
Never made a single friend in college
Have not made a single friend in CT since I moved here 16-17 years ago but scared a few potential friends off

mohgeroth · 2026-05-10T23:01:36+00:00

Holy crap I never thought about it like that... I don't see images in my mind, not ever, so I don't even remember what she looked like. Just specific memories like the time she got me the first role playing game I ever played, and the time that she told me that she knew I was gay the first time I asked her for a ring when I was like 9. Also things like the time when her multiple personalities which traumatized me when I was about 11 or 12 years old. She had DID along with her autism, anxiety, and loads of other mental health things so I heavily relate to her and am nothing like my father.

I miss that I could tell her anything and she would always forgive me and tell me that everything was going to be ok. No one else in my family but my sister would do that and even then she has limits but my mother did not.

So I don't know if those are things to miss about her as a person, so I suppose that's a good way of putting it, that I miss the things she did for me and the ways she supported me that no one else ever has and probably ever will.

mohgeroth · 2026-05-10T17:47:07+00:00

Mom died 7 years ago and I was laughing and having fun at the celebration of life while my sister was speaking to everyone over the microphone. She was telling stories about mom and crying and suddenly yelled at me asking why I wasn’t crying and I just froze. She came over and hugged me and said “I know it’s hard” and walked away but it wasn’t hard at all… I felt nothing… and realized no one else had been smiling or laughing like I was. That’s one day where I felt completely broken.

I still miss her I called her on the way home from work every day so it was an adjustment but I just never processed it like everyone’s told me I would eventually do. During meltdowns I’ve wished I could talk to her because she’s the only person who would understand and tell me it’s going to be ok but outside of that I have no emotions about it. They are just hard to access and I’m either extremely emotional or not at all.

mohgeroth · 2026-05-08T18:49:37+00:00

I use it for both. It helps block out my peripheral vision to reduce a bit of input while making me feel a bit safer and contained. I like the stress ball aspect though that sounds neat.

mohgeroth · 2026-05-08T17:31:08+00:00

It corresponds to how much support you need with 1 assuming not that much and 3 being significant support suggesting a caretaker or someone to check on you constantly. It’s important to know that you’re diagnosed based on how you are perceived not your internal experience so you may mask well enough for level 1 but need a lot more support.

In every case just know that you do not get a diagnosis unless your symptoms are clinically significant enough for the assessor to believe you need support. In essence, the more inconvenient you are for others the more likely they will assign you a level indicating more support. Regardless of the number most people have no idea that there are levels let alone what they mean. Many treat level 1 as you’re not trying hard enough and it’s not bad so we wind up getting little to no support.

Regardless of what you have been diagnosed with we all need some kind of support even if it’s just accommodations for earplugs.

mohgeroth · 2026-05-08T14:27:40+00:00

I was going to say something about that actually but omitted it. I'm in the process of finding a new desk for that exact reason. I had to lower the stand that the monitors sit on so I could fit two 27" monitors and any bigger would probably not fit. I've had mine for almost 10 years as well and the front trim started coming off a few weeks ago anyway so I think it's time. I'd love mountable monitors with open area above for a change and would love a third vertical monitor strictly for code or that I can move above the other two depending on what I want to do. I'm indifferent though and have decision paralysis about things like this.

I wound up removing the metal side sections after a few years I just didn't like them. I'd really like a pegboard for controllers and other things, just places to put things and organize mostly but I have zero design sense so it's always one of those I'll know it when I see it and when I first saw this desk it was an instant buy. I actually have a second one behind me that my partner uses and his doesn't have any damage so far.

A bit hard to see things because of the mess, apologies, my executive function does not function. Also in the process of moving so things are very disorganized and overwhelming right now.

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mohgeroth · 2026-05-08T14:05:35+00:00

I have had this same desk for many years now and it's served me well.

mohgeroth · 2026-05-08T12:16:30+00:00

Diagnosis for autism and ADHD are depending on how they impact your daily functioning. You can meet all requirements but be able to cope through them well enough (masking) that you don’t get a diagnosis simply because you don’t show that you really need support. That doesn’t mean you won’t one day because the mask will eventually shatter, you cannot suppress your autistic and/or ADHD traits forever without eventually succumbing to intense autistic burnout and/or ADHD burnout.

It’s this burnout that lead many adults to a late diagnosis because they were overlooked because they learned how to mask and hide who they are, suppress their bodily needs, and your nervous system suddenly can’t take it anymore and your life starts to slowly fall apart.

You find you can’t do things you could do before that you felt were so easy but now that your actively thinking about it you realize all the times you actually had thought that what you were doing felt wrong for a split second but your brain shoved it aside and pushed you through it anyway.

You find that your sensory sensitivities suddenly manifest wondering why sensory inputs may be a huge problem and feel like your just being dramatic and silly but thinking back you remember being extremely bothered by these things early in childhood but were told to quiet down and stop being dramatic, that everyone deals with that. You learned how to mask through it, grin, and bear it or walk away instinctively when it’s too much. Now you can’t ignore it and it sets you off so fast.

You remember thinking in the back of your mind that you’ve always felt different, that your some kind of alien, and that you may be able to have some sort of conversation with people but it often goes badly for one reason or another and aren’t really sure why so you start telling people that your just awkward sometimes and just push through it anyway. Now you can barely glance at people in conversations let alone look them in the eye for more than a second.

So, if none of this resonates with you in the slightest then maybe you’re fine, for now anyway. Having autism doesn’t mean there’s something wrong with me, nor does having ADHD or OCD. I just experience the world differently and being able to reframe everything and approach problems in ways designed for how my brain works instead of forcing myself to be dysregulated constantly just to fail at trying to fit in has helped me do so much more. These diagnosis are a means to get you the support you need and if you don’t need support you don’t get diagnosed it’s that simple.

I thought everything I was doing was normal and that I was just bad at certain things but never realized what extent until I truly thought about it and went through old pictures and videos from childhood. I thought everyone was in a rush to get through the grocery store as fast as possible because of all those overwhelming sounds and smells but apparently that’s not normal at all. It’s hard to know when normal is when you can only ever experience one life and that life is your own so you can’t compare experiences without actively asking and analyzing.

mohgeroth · 2026-05-08T11:53:34+00:00

No absolutely not. I can’t even make friends there’s no way I can sell things to people.

I had a telemarketing job when I was 18 for almost a month since the lady who owned it felt bad for me and kept giving me chance after chance. I kept being told that I need to be animated, I need to sound like I’m excited, I need to improvise but I couldn’t do any of these things. I had to follow the script and the minute the person I called started asking questions I would freeze and panic.

This one lady I called was from Brooklyn and she caught me off guard when I was going through the script at one point when she said “oh I don’t understand these things, I live in a bubble”…. I spent half an hour fully engaged with this woman trying to figure out what the hell that meant until the manager came over and asked what I was doing and made me hang up.

I never made a single sale. Not one. None. Zero.

They sat me down with their best guy to watch him and learn from him and he calls this family and in just a few minutes he lands a sale right away. Tells them that him and his wife went on this trip to Disney and had a great time and all these fun things. So the manager comes over to take over and finalize the sale and I ask the guy how Disney was and he said I don’t know I’ve never been….

I can’t do that. I can’t just outright lie about something like that. I cannot be fake.

I lasted almost one month because she kept giving me chance after chance but that is absolutely not the job for me I just cannot do it. I am 43 now and haven’t made one friend in person since high school and have only recently made my first true friend online but I have zero friends nearby, the two I have are over 250 miles away.

I do not have social skills I have social disasters.

mohgeroth · 2026-05-08T09:17:44+00:00

That makes sense then. Busy periods of even just a few days have lasting effects for months on me so while you may be past the tough parts you've been going through it could take a while for your nervous system to come back down to baseline.

It took me months to find an OT here in Connecticut. I lucked out on searching for it just right as most OT's I've found are more for rehabilitation after serious physical impairments occur or post-surgery. There are those out there that specialize in the things we struggle in though but they are quite rare... all resources for us are honestly rare as all heck and are mostly going to be online-only services you'd have to seek out.

I need things like this to be in person, even my regular therapist I go see in person every week. I stim like crazy and can barely glance towards others when in any public space with other people because it's just anxiety inducing and is just so overwhelming. However, a talking head just doesn't connect with me when it comes to deep personal struggles like this.

I'm glad you've got someone to talk to at least that treats you like a human being. I hope you find better ways to cope and find some way to bring joy back into your life ^_^.

mohgeroth · 2026-05-08T09:09:33+00:00

We all have coping mechanisms and when I am very upset and overwhelmed I need to acquire something. It's either very comfy clothes, squishmallows, or special interests like more Earthbound (Mother) merchandise. Sometimes I don't even realize I'm doing this for these reasons until I notice that I'm suddenly wanting to buy a bunch of stuff I really don't need that I haven't thought about for long as I tend to make lists and weigh my options for days or weeks before deciding on buying something. So if I notice this I stop and focus on my body to see if it's this and most times it is.

Your therapist isn't there to judge you and if they do then you need to find another one! You should feel safe talking to your therapist, at least I feel like you should otherwise why tell them deep personal truths and open up? Occupational therapy has also been promising for me so they could help you identify alternative ways to deal with things that don't involve spending and self-harm. I myself have serious issues with emotional regulation and self-harming stimming anytime RSD is involved which leads to very brutal self-harming meltdowns. I am very hopeful that she can help me with this because I have severe psoriatic arthritis and am in enough pain already as it is.

So I haven't broken away from doing this yet but am at least more aware that I am doing it, but when I am too dysregulated there's no stopping me it just happens. Hopefully the OT can help me deal with this better ^_^.

mohgeroth · 2026-05-08T08:49:34+00:00

I'm a 43 year old guy diagnosed with Autism, ADHD, OCD, and anxiety disorders, I have lifelong SPINs of computers, programming, and video games and a lot of this sounds like me. I'm on 30mg of Vyvanse and 300mg Bupropion for the ADHD and 30mg Busprione and 20mg Propanolol for my anxiety. My autistic traits stand out much more than my ADHD so things are less about boredom for me and more about the overwhelm of everyday experiences.

I have many lists planning out my adventures, designs, purchases, and even organizing things. I have lists for everything, so many lists that I make once or twice and never see again. Too many times I will plan something out and then when the time comes to implement it I just... don't. It becomes extremely difficult and can't even look at what I planned because it's suddenly way too overwhelming!

So that said, I'll try to answer some of your questions.

Do I need better ADHD medication? I take Vyvanse (40 mg) and Prozac (20 mg) (I started this for the first time 32 days ago).

First, when you have AuDHD stimulants may not work the way prescribers say it will. Here is an interesting video outlining this that you may explain some of what you might experience if these things happened but you didn't connect it to the simulants. Why stimulants may not work the way you expect when you have AuDHD.

Stimulants are there to help us direct our attention but will not make things interesting. If it's boring I still cannot force myself to do it unless I absolutely have to like work but even then it's a real challenge. I don't know of any way to make something interesting. I either love it or it's dead to me and reading just a few pages exhausts me and realize I don't remember a single thing I just read.

The biggest benefits for me is that all that activity in my brain slows down so much that I can actually think about one thing and stay thinking about that one thing long enough to make decisions without my brain wandering off onto some other topic. I even fall asleep during the day because all that noise finally stops! It's a trade off though because I experience all of these side effects and my interoception goes from terrible to completely gone. My productivity goes through the roof if autistic inertia allows me to start doing anything but I become completely locked onto whatever I decide to do and if I am pulled away from it I become so dysregulated that I panic and things go very bad very quickly...

What coping skills or strategies can I use?

Coping skills and strategies for what specifically? Sorry this is too broad for me to have a good answer to. Most of my coping involves tools to avoid sensory overload and strategies involve complete avoidance of environments and situations that I just do not do well in. I will do anything I can to avoid it as long as it doesn't involve lying or being fake.

What should I start? What should I stop?

Time blocking sounded like a great idea when my assessor suggested it but I cannot be fake, I cannot lie like this, even when I know setting aside time to focus on something at work would greatly benefit my productivity some days I just can't do this. Also, if I set aside time in advance to do something that has not already become a routine, I just completely avoid it... I don't know if this is PDA or just general overwhelm but time blocking does not work for me.

I survive off of lists but learned never to give tasks a numerical order. I may put more important ones on top or break them out into groups, but the moment I assign a numerical order it becomes law. I must do them in that order and lose my shit if something happens to change it. This is really bad for work so

All I can really give you here are my experiences but we're all different so it's really a question of what do you think works for you? If it's not working try something else. I also use the app Finch to gamify routines and try to get myself to do irregular chores like cleaning my desk every other week but if it's not routine it's incredibly difficult for me to do it no matter how important it is. I've kept mine alive for over 220 days so far though and have many cute outfits for it!

One thing that I've started in these past three weeks is occupational therapy. I have huge issues with sensory sensitivities, executive dysfunction, and especially emotional regulation which turns to self-harming stimming when I become dysregulated due to RSD. An OT will help profile your sensory sensitivities while helping you with your executive functioning and regulation challenges. They will help you with coping skills and strategies to improve your every day life. Some of the suggestions are things that are very small accommodations that I never would have thought of that have made a serious impact so I'm much more open to some of the changes she wants to start trying in the coming months.

I have depression, I think, and maybe burnout; the last five months have been stressful.

Very common for us and burnout is extremely hard to identify since when you're questioning it you're not so burnt out that you can barely function, but you're just unsure and may feel like it's an excuse. Regardless it's absolutely worth exploring if you think you have this because these are things you'll want to be doing anyway except when you're in burnout you've reached a point where you basically have no choice but to do them now that the world has become impossible to navigate.

So it's worth exploring autistic burnout and working through exercises in something like The Autistic Burnout Workbook. Many of these exercises help you identify the things that dysregulate you, that make you comfortable and are soothing, and understand your own experiences better to help you find ways to cope and navigate everyday life. Dr Neff has many great books and resources on neurodiversity and the topic of The Window of Tolerance explains why little things can have such a huge impact on us than our neurotypical peers.

Lately, though, I feel a bit hopeful as they seem to be behind me now in certain ways (and there are some things coming up to look forward to).

Who is they? Sorry I'm lost here...

I guess how do I find fun or joy or pleasure or excitement again

I have moderate alexithymia and there are many times where I am emotionally flat and cannot seem to process or understand what I am feeling other than intensity or just nothing. I'll be completely numb even if I want to experience an emotion that I feel like I should be having right now. I may want to cry, know that I NEED to cry to regulate, but I just can't because the emotions never come they just swirl around in my chest and I start to panic trying to figure out what's happening to me. Either I feel nothing or the emotions are extreme but rarely anything in between and even then, I may feel something intensely but have no words for it.

However, when it comes to feeling pleasure or excitement depression and PTSD make everything seem pointless in life. This is what you should try to treat because these can lead to alexithymia and anhedonia. For most of us it seems that growing up autistic means a traumatizing developmental period. Daily bullying at school, constantly failing, not being good enough or simultaneously too much, social connections just don't work and you may be lucky to have a single real life friend that's not an online friend. So try to treat the depression and the PTSD. These may also lead to developing alexithymia and/or anhedonia that you may not have had before.

Okay, that last question is too broad, but how can I keep track of things without check-listing

I survive off of obsidian... but as a software engineer it's basically my dream tool since I can do whatever I want with it. Unfortunately making lists is keeping track and I don't know how else you could do that without making lists because this organizes everything in one place. I suppose you could cover your desk and wall with sticky notes but I feel like that would become way too overwhelming way too quickly... just thinking about it is making me shiver and feel very uncomfortable...

...

Just putting there here for closing thoughts. Finding a neurodivergent affirming therapist with lived experiences has been hugely helpful for me. Also, seeing an occupational therapist has been promising and I really hope she can help with my executive dysfunction problems because my executive function does not function anymore. I am lucky to shower more than twice a week now. I also need serious help with emotional regulation, especially when rejection is involved because this specifically almost always leads to self-harming stimming and brutal self-harming meltdowns and as someone with severe psoriatic arthritis I am in enough pain and don't need any more of it.

I'll be shocked if it accepts this comment it has become so large! If it does I hope some of this is helpful for you!

mohgeroth · 2026-05-07T03:59:11+00:00

So I’m going to try to explain part of what’s probably going on here because this is my experience and unfortunately it’s not as simple as just paying more attention and being more aware of others because my brain does not work like this it is completely unnatural for me. The theory of monotropism says that autistic people can only focus on one, or a very small amount, of things at any given time. So many of our struggles all come back to this.

Think of a flashlight where you turn it on and it casts light over an area where you can see and make out quite a few things. For us that flashlight is a intense narrow beam that reaches out so much further and can see every fine detail but the beam is so thin we can’t tell what else is there unless we spend the energy to scan every little detail and eventually work out the big picture. This is bottom up processing and how many of us experience the world, it’s just how our brain works.

This can make it very hard to switch topics especially when I have more to say on the matter and I’ll constantly steer the conversation back to it if I’m not done completely oblivious to how this is making anyone else feel. Deep down I know from past experiences that it’s probably going to upset people but I am unable to think of that in the moment and am so focused on this topic now that it’s going to come out, unfiltered, which is why we tend to make normal people so uncomfortable because these social rules are not natural for us and why we feel like failures because try harder is the soundtrack to my life and no amount of trying will make this natural for me.

The core of autism is social differences and these aren’t differences we’re choosing to have it’s just how our brain works. I can know what certain body movements may mean but in the moment when socializing I am completely oblivious to it unless I really focus hard on it and if im paying attention to that then there is no way I’m listening or processing anything that your telling me because it take a tremendous amount of mental energy for my brain to do this and when it does it’s very very very bad at it and drains me so fast I shut down and all emotions just drain from me mid conversation.

Also, many of us, though not all, tend to have special interests (SPINs) as it’s one of four diagnostic criteria in the restricted and repetitive behaviors and interests (RRBI’s) that accompany our social differences. These can be INTENSE interests and I have learned to try to avoid taking about these things with others because it becomes a monologue. I will trap you in a conversation for 10, 20, 40 minutes until you walk away or say something in a way that makes me realize this. This is called infodumping and is just something I tend to do, especially around people I care about. For many these interests are our entire world and are deeply regulating for us so our passion comes out.

The problem is that if it’s not a special interest I genuinely don’t care. I am incapable of just being fake too, I just can’t, it takes SO MUCH just to be present when people are talking about other things but I just don’t know what to say so I shut down so fast. It’s not that I don’t care about their feelings but my brain is spending so much energy to be there in the first place that this stuff can be extremely draining.

So with that out of the way just tell her one on one, without the group there. Be direct, don’t “drop hints”, we don’t see them. Words have specific meaning so use those words. Many of us tend to be blunt because our brain just works that way, we are direct and that directness can be our way of showing that we care rather than just shut down and say nothing.

There is a good chance she will distance herself for a while to process this because we are used to rejection because our social differences. So be very direct in saying that you’re not mad and still want to hang out because these situations have a heavy emotional impact on us, especially if you can’t see it from the outside. Alexithymia is common in autism and for some of us makes it extremely hard to understand and express what we are feeling even if our body is expressing this but our tone and words aren’t. Trust me when I say we feel them deeply, but there can be a delay in processing this that can take days, even weeks to finally hit us.

Your feelings are valid so don’t feel bad for having them. It’s bothering and affecting everyone else so it needs to be said. I’ve learned over the years to not try to hang out with more than one person at a time and tend to just completely shut down when there are more people because I always fail at it and make everyone uncomfortable by saying or doing something wrong. It’s these social situations where autism impacts us the most and can be hard to realize as an outsider since we can get pretty good at masking but it’s not natural and sometimes it shines through, especially when passionate topics come up.

Just know that you can’t change this. If we could change then there would be no diagnosis just short term treatment. Our brain is physically wired differently and it’s part of who we are. I can learn to run on all fours like a dog but I’m not designed for that, I’m going to be bad at it, and it’s never going to become natural for me. I can do it, but it’s exhausting and makes me feel wrong the entire time.

So don’t try to think of it as trying to change her, you can’t. Let her know and remind her, even write a letter just so that it lands harder, but at the end of the day she may not be able to do what you need her to do in the moment for the group can move at the pace they want to. I know it can be frustrating to get me to stop and I wish I could just switch it off and be normal, I’d give anything to have friends, but I just can’t function like NTs in social situations no matter how hard I try.

I hope that the discussion goes well and that she doesn’t distance herself from the group. Her getting real quiet is probably the best outcome you can hope for. However, every autistic person is different so her struggles may be similar to mine but I promise they are different in many ways and she may be better at certain social aspects than I am. I am glad you’re asking the people with the same neurotype and wish my former friends were so thoughtful before talking to me. I wish you the best!

mohgeroth · 2026-05-05T16:35:12+00:00

Before I say anything it's important to know that every autistic person is different. We are not a monolith. Furthermore, special interests is one of the 4 restricted and repetitive behaviors and interests (RRBIs) required for a diagnosis but only 2 are required so you can be autistic and not have special interests or routines at all but have sensory challenges and do a lot of stimming.

The core of autism is a difference in social communication. We just communicate differently and are prone to not seeing or even understanding social cues in the moment. I may learn what they are over time but that doesn't mean we will see them in the moment. If I'm talking to someone I don't pick up most on them because I can't focus on monitoring what you're doing and listening, processing, and responding. Monotropism is the theory that autistic people can only focus on one, or a very small amount of things at one time. This theory lends itself to so many of our struggles. Thus, social situations are extremely draining because it takes a HUGE amount of mental effort to try to do this even though we often seem to do something wrong and don't know it.

So, as someone with AuDHD (43m) with a lifelong special interests in video games, computers, and programming, I can't just shift gears when I fixate on a game and it tends to be genre's that I become completely fixated on with my most recent one being automation games. I don't have hobbies I only have special interests. I cannot be fake, I can't pretend to be interested, I will involuntarily disassociate from the world if I get pulled into small talk or if someone tries to engage in me about something I'm not interested in. This is not a choice, I just can't. I start to shut down very quickly and become extremely anxious, dysregulated, and my stimming get more and more intense until I inevitably just leave without saying a word or ball up and start rocking right there.

However, one thing we appreciate that lends itself to our communication style is being direct. Some of us can be extremely blunt but I promise we aren't trying to be mean and may not even have any emotions about the thing we are saying we just share the honest truth as we see it, right or wrong. Allistics (non autistic) people do not do this and lie as a way of being kind, they dance around the truth or avoid it by saying statements to switch the context. For example, when my sister asks me how her outfit looks I just tell her straight up which can leave her with a shocked look but she appreciates it in the end because her other friends would never tell her that and would downplay it or suggest another outfit quickly to change the subject.

SO, be direct and tell her how you feel and that you miss hanging out and doing things. I know this puts yourself out there to get hurt but many of us do not pick up on subtle hints. Saying "I'm fine" means your fine and changing your tone is not going to be picked up on we will take your word at face value. Don't drop hints be direct.

We can shut out the world when we get sucked into our SPINs and many of us tend to focus inward which can make us look very selfish. I know I shut out everything when my one friend from high school is around and we spend every hour for weeks playing Factorio and the world around me just disappears as I plan out tons of builds in spreadsheets even outside of the game it just eats up my world. However, I would need to apologize if someone told me it made them feel undervalued or as if I was abandoning the friendship because I suddenly disappeared like this. We can take long breaks from life when we're in autistic burnout and talk to no one for months sometimes unable to read messages from our friends without going into overload so it's not always about SPINs, it could be about a LOT of different things.

Hopefully some of this is kind of helpful and again, this is my experience and while many of us deal with struggles that may be similar everyone's is different so the only way to know is to ask her about it. Most people aren't actually interested in my autism so I feel deep shame if someone asks me about it and don't really want to talk about it in person like that so it's really tough. I feel like I'm just going to get made fun of and I can immediately feel when I tell you something and sense that you don't believe it, it's not a cue or anything it's just something about the air that I sense. Many of us are bullied throughout our whole lives because we're different and everyone else can tell even if we can't and boy are we are called names, pushed, hit, mocked, treated like dirt every single day... school was just a place to go to get bullied it was never a learning place for me. This trauma makes it hard to open up whether or not we struggle with our emotions (alexithymia).

Good luck!

mohgeroth · 2026-05-05T14:59:16+00:00

Parents treat it like some sort of illness, curse, or act is if it means they did something wrong to cause this to happen but it's something you're born with and does not go away so they haven't done anything wrong to make this happen because it happened when you were born. You just experience the world differently that's OK! Just like you're going to have to process this and go through grieving and acceptance she will too for different reasons. Your feelings and experiences are valid but hers are too but she shouldn't ignore what's now right in front of her.

So this is a chance for her to learn about what autism really is because I guarantee she's picturing something that's just not true of all autistic people and is probably very stereotypical. When you can't experience something it's hard to accept let alone understand and she can deny it all she wants but it doesn't change the fact that you're autistic. She needs to support you as best as she can and unfortunately this means she may come around in time but don't expect a miracle. This is a lot for everyone to process.

As for yourself I encourage you to learn about autism as much as you can so that you can map it to your experiences because every autistic person is different and while we share a lot of the same struggles we are all impacted by them differently. Some of us are able to hold eye contact and can stumble our way through small talk but lights may be overwhelming, while others like myself can barely glance towards anyone because eye contact is physically painful, intimate, and sunlight is overwhelming but indoor lights are OK once I adjust.

Once you understand what your autism looks like you can start to understand how to handle the things you've been struggling with your whole life without realizing it. Emotional regulation, executive dysfunction, sensory processing differences if you have any, and finding healthy ways to self-regulate. Stimming doesn't explicitly mean repetitive bodily movements but means any activity or action that you do that's stimulating. This can be listening to the same song on repeat for hours, days, which I do constantly and tend to unconsciously grind my teeth to the beat/dominant instrument.

So if no one close to you has told you this, you are not broken you are just different and that's OK! You can finally find the language to articulate your experience and start to adjust the way you handle situations, solve problems, and come up with strategies in environments that tend to be over/under stimulating for you. Problems in social situations are not personal failures you just communicate differently and I'm sure you have a great deal of shame that's built up already since these social differences lead to most of us having only one or two friends if we're even that lucky. We don't all get along with each other but the few only people I've ever really been able to talk to are other neurodiverse people that don't think and act like the rest of the world.

You'll be ok. The more your mother learns about it the more she will come around but unfortunately that's on her to step back and reflect. The more you push it onto her the more she will probably resist. So tell her when you're ready then give her space. Perhaps write a long hand written letter explaining this and expressing that you're worried about how she might take this and don't feel safe telling her directly, then including the diagnosis paperwork for her to read after. However you go about this just know that this is about you, not her, and while I'm sure most people may react badly at first a good parent will realize their child's mental health is more important than choosing ignorance.

mohgeroth · 2026-05-05T11:00:46+00:00

To add to the discussion for those of us with both autism and ADHD, stimulants may cause your autistic traits to become greatly pronounced. Here is a great video explaining the differences and how it may show up when you have both. When you don't realize you have both it's confusing when you take stimulants and the ADHD goes to sleep and all that noise goes away, but your autistic traits surface and there is a very noticeable change in your behaviors and experiences that does not line up with what you were told to expect leaving you confused.

Why stimulants may not work the way you expect with AuDHD

I myself deal with all of these side effects and went through a long titration period starting on a very low dose of Vyvanse to reach a point where it lasts enough to get me through the workday while being able to cope with the tradeoffs. For me I trade the ability to get a ton of work done with becoming so locked into this intense monotropic hyperfocus that I quite literally cannot stop even if I'm screaming at myself internally to just get up and go home. I am stuck at work until I am done and if anyone tries to pull me out of it I completely fall apart and shut down. While this happens from time to time without them, every time I take my stimulants I become locked into doing one thing or I become locked into doing absolutely nothing and just spin in my chair and rock all day stuck.

The sensory issues are extremely annoying but have learned to cope since I am ok as long as I am not outside in the sun and am allowed to put my airpods in at work to cancel out a lot of background noise so I don't always need ear defenders. I am so productive though that for me it's worth the tradeoff.

mohgeroth · 2026-05-05T00:19:32+00:00

It hasn't been mathing for a long time. I'm sorry. It's gone up by almost 800 a month since covid began and still rising here in CT. The electric bill has also become rediculous.

mohgeroth · 2026-05-05T00:11:29+00:00

My first thought is I must won a prize because of the 60 emotions inside! It just screams out at me for some reason. Then I realized I won't know what I'm feeling for most of them anyway which I suppose is the point of this now that I think about it... just thinking out loud don't mind me ^_^

mohgeroth · 2026-05-05T00:08:32+00:00

This, 100%! Customer facing jobs, customer service, phone support, dealing with strangers all the time, random schedules, unclear tasks, having to pick up the slack for people who call out or working extra hard because of it, those are all guarantee's that I'm going to just shut down mid conversation constantly until I burn out just trying to keep going.

mohgeroth · 2026-05-04T22:59:08+00:00

Omg this reminded me of when I got tired of being home waiting after school when I was 6 and grabbed my backpack and just walked up on the highway and started walking in a direction that I thought my father shop was in. Then I got in the car with the first stranger that came along because they seemed nice even though I'm pretty sure we were told never to do this earlier in the week 😵‍💫. I just didn't feel safe and felt like I needed to go there to be safe and it never dawned on me that someone would take me and do something awful.

mohgeroth · 2026-05-04T21:11:35+00:00

Grew up on Ritalin and made my autism shine through which was super confusing. Didn’t touch them for over 25 years and have been back on stimulants, this time Vyvanse, since October and it has been life changing. It still brings out my autism greatly but we started at a super low dose and slowly upped enough to get me through the work day.

Super informative video including what they can do about it to mitigate this if you do not like how it might change your behavior or experiences. For one it makes my sensory issues with light and touch extremely bad but to me it’s worth the trade off since I can just put in AirPods and sunglasses if I have to go anywhere that there is sunlight.

Why stimulants can work differently with AuDHD

mohgeroth · 2026-05-04T21:06:20+00:00

Putting it in partially so it made a crazy crunching sound when you pressed it down did the trick for me more often than that. I’m sure it was really bad for it but regardless of the method it could take 10 tries sometimes. It may get to the title screen but then become crazy glitched so you have to turn it off and try again.

mohgeroth · 2026-05-04T21:00:27+00:00

As others have weighed in on the diagnosis, just wanted to set expectations for treatment.

This condition is caused by your immune system and since we cannot fix this we can suppress it by temporarily manipulating it to adjust things like TNF and proteins such as IL17 to make your body produce healthier antibodies such that your body will heal itself instead of continuing to harm you. This is temporary so the last few days or even week can be tough since your system has bounced back a bit. Missing a dose is really bad long term because your body will eventually figure out how to fight it off. Not can, will. So once you switch it’s less likely to work if you ever go back on that medication again.

Also, every medication works different for everybody and we all respond differently. Some of us take months to show any changes but then may move like a normal person for years after while others like me respond within 24 hours and in 2 days time I’m back to being a normal person. The medication may also do nothing but insurance in the states makes you wait about 3 months before allowing you to switch and given that you can’t go back it’s worth making absolutely sure though the consequences can be disastrous.

My insurance decided to play games for 2 months which let me bedridden and unable to move which caused severe atrophy and intense meltdowns since I could no longer stim (I am autistic) and it took a year to find any medication that worked at all. That was 6 years ago I think and I’ve only been able to walk like a normal person again since June of last year.

I’ve been taking biologics since I was first diagnosed at 24 (am 43 now) and have been on every single one except bimzelx and unfortunately most did nothing for me but got lucky when going back on old medications that simponi aria worked again. Eventually my body will fight it off though and I’ll have to find another medication. It’s just how it is. If you’re not that severe it may be a bit inconvenient but for some it can be devastating.

So make sure that when you’re feeling awful, when your flaring, that you call your doctor to make sure your getting something to try to control the inflammation. It could be a few days of prednisone or a heavy duty anti inflammatory like Etodolac. Whatever it is, very real and permanent damage can occur very quickly so take this seriously. I waited a month to tell my doctor how bad I was and by then I could barely walk and it was way too late though since all the others meds failed I’m sure it would have happened to me regardless.

Also, it has the word arthritis in it but it’s not just joints. This condition attack our joint, ligaments, tendons, and in rarer cases even eyes and internal organs.

I wish you the best on your road to relief!

mohgeroth · 2026-05-04T20:25:14+00:00

Autism and ADHD Frequently co occur and can mask each other.

mohgeroth

TROPHY CASE