u/potatopeeler167

Ok so I decided to bring this debate here because I think maybe yall might understand me better. I’ve been analyzing the concept of autistic masking and have gotten a bit hyperfocused on a particular inconsistency.

I have seen many people online particularly level 1, LSN talking about their experience with masking and how they’ve never really known who they are and tend to mirror other people and be like a chameleon by taking on parts of others personalities. And I just do not relate to that. Now I’ve been wondering if perhaps maybe I’m just not very high masking so I don’t understand that degree of masking but for me masking is solely the suppression of my autistic traits so I can blend in better and not be socially punished.

I’ve always known who I was and what I like and felt strongly and the only times I’ll “mirror” might be unconscious learning about what’s acceptable conversation or tone or facial expression but not like copying anyone specifically or trying to be like anyone else.

So this got me wondering, and not just because I don’t experience it but because based on the definition of autistic masking it is centered around suppression of traits. Now that being said I understand that allistic people mask too and there’s different types of masking. When it comes to this chameleon camouflage trait, it was something only coined more recently in autism as more women were later diagnosed and they noticed this pattern among them. However this is not a pattern noted previously in masking and personally I don’t believe in male vs female phenotypes of autism. To me this type of masking doesn’t seem autism specific is seems to be seen in any neurotype and in fact is actually more so mentioned as criteria for BPD or even NPD and could possibly be more related to trauma than autism.

Does that make sense? What do yall think? My issue is with the definition of autistic masking feeling too broad and I cannot say that camouflaging isn’t a part of autism for sure of course and this is absolutely not a way to dismiss people who are autistic because I think it could just possibly be trauma or another comorbid neurodivergence / PD contributing to this “loss of identity” and need to “camouflage and mirror”.

Edit: I appreciate yalls comments and not invalidating my point of view. I think a big point that I’m trying to make is not that it isn’t a type of masking but rather that it isn’t specific to autistic masking. That anyone can mask in the chameleon / mirroring type sense. It’s not that I don’t mirror at all, I learned from scripts on TV as a kid, I unconsciously learn how to human by observation like everyone does. But I’ve always known who I am, I’ve never adopted the personality of anyone specific or copied anyone on purpose or practiced facial expressions in the mirror or tried to copy others expressions or tone. And at the end of the day there’s no right answer, it is complex. I guess I’m just tired of seeing that as the loudest voice about what masking is.

Been diagnosed for 12 years and have since been on lialda pill (failed quickly as it was coming out whole), methotrexate (failed not long after), remicade IV (was on for years never failed it) but the I switched to humira pen because the infusions were just too much for me and my doctor approved that. I was on humira pen and then the off brand adalimumab for like 3 years until I hit the worst flare of my entire life 7 months ago and had to start seeing a new doctor since I’ve moved. They said I failed humira and so I’ve started skyrizi amongst trying practically every steroid possible with no luck form those either. Prednisone helped a little bit with some symptoms but not enough and the caused extreme gas pains along with other symptoms.

3 months into skyrizi and I’m not improving in fact I’ve started bleeding heavy amount of bloody mucus multiple times a day for weeks now and I’ve NEVER been a bleeder. Tenesmus is slightly better but my frequency is even worse I’m going 14x a day on average and then like 6-10 bloody mucus only movements after that. So my doctor believes skyrizi isn’t working and I’m about to have my second colonoscopy this year in 2 days. If it shows now improvement she wants to take me off skyrizi and either retry remicade or switch to a JAK like rinvoq however I’m 27F and want to plan for kids in a couple years and I’m very very hesitant about stating something I will have to stop and could potentially cause another flare if it does help. So I would much rather try other options first.

I did bring up combination therapy to my doctor last week. And at first she wasn’t very on board due to immune risks but after I explained everything I’ve tried she is considering it. I want to give skyrizi more time as I’ve personally noticed some changes but I have a strong feeling that mono therapy is just never going to be enough for me considering even prednisone wasn’t enough… I’m not sure if my doctor is going to push back on this, but I really think that this is what I wanted to do and try.

I think trying remicade on top of skyrizi depending on how the scope looks is the next option I want to try.

Just wondering anyone else’s experiences with compound therapy and doctor approval and how bad did it have to get before they were okay with that?

I’ve heard it’s actually not as dangerous as previously thought especially because I’ve already been on so many biologics and they never seemed to cause me issues with my immune system. I haven’t been able to function AT ALL for 7 months and I’m still extremely desperate right now.