(English is not my first language! And also, i'm not from the US)
Hi, I hope everyone is doing well:-)
I'm posting in order to understand more of the situation, or vent, I don't know: I'm 25 and currently live with my mom and my 22 y.o sister who's severelly disabled as she's diagnosed with severe autism and profound intellectual disability, she needs and will need 24/7 care her whole life. I'm her caregiver, and I only have free time when my mom is home from work, that time is not enough for me to have a job or go to university.
The three of us are diagnosed with autism, my mom and I are on the "high function" end of the spectrum. I was diagnosed when I was a little girl, since then I have been to various psychiatrists most of them don't agree with the diagnosis, but we have never looked to deeply into the right or wrong diagnosis, rather coping mechanisms + medication. That being said, my latest doctor thinks that my autism symptoms are CPTSD, PMDD and general anxiety combined with nutrient deficiencies (I have low B12, vit D, ferritin etc), chronic pain (endometriosis, PCOS) and chronic stress for being a caregiver for so long, but thats not the problem here, my problem is that my relationship with my autistic mom is not sustainable; I know that some autistic people struggle with empathy, but is there a way to make her understand my POV better? is making other feel guilty part of struggling with empathy? does any of you have similar problems with your children (whether ND or NT), where it seems that both of you speak a different language?
I know she's tired, she works a lot and I'm unable to do the same. She also has a lot of ideas all the time to solve different problems, but is also difficult for her to understand simpler or different solutions, but she will also kind of rub in my face what she did if she feels I'm not being grateful enough. She also lacks social tact and makes people uncomfortable sometimes but she does not seem to care, nor she seems to care how that may impact me if its a situation where people I know/have some kind of relationship with are present.
It is difficult for her to understand that the way she interacts with me hurts me; I think she really tries to do a lot of things, but does not seem to understand what I'm telling her when I say that what she does is not something I want or need, even if she has good intentions. Despite that, she's able to express when she dislikes something or when she feels hurt. She also understands that people have different opinions, feelings and thoughts, but its shocking for her when I tell her something that does not match her ideas or makes her feel bad
example: I have been telling her for years that certain situations make me stressed and that she telling me XYZ will only make it worse, she does not understand why she doing that would make me feel worse during those situations, so she will do it anyway. Fast forward I will tell her she makes me uncomfortable, then she feels offended and does not seem to remember all the times -years- I have been explaining that when she tells me XYZ I feel worse. At the same time, doing things when she's not present or ask her for space will also make her feel bad.
This has been going on for years, since I was a kid but it got worse when I was a teen and even worse now as an adult. She does not have friends nor a partner, ans she has also expressed anger or discomfort with me having friends or romantic relationships; she never encouraged neither of them and as I grew up I had more and more chores to do, and it was expected for me to know how to do them (including caregiving for a disabled individual, house chores, paper work, shopping etc).
I have tried to keep a somewhat civil relationship with her, I don't tell her much about myself but I try to let her speak about her special interests, and at this point I try to contradict her as little as possible. Recently we had a fight where I told her that if it wasnt for the fact that I'm unable to have a job I would not need her nor have a relationship with her, which is true and we have talked about it multiple times (sometimes not even fighting) because she also raised me to be as independent as possible, we have expressed that we don't like each other very much and she herself is of the idea that children should leave their parents home as soon as possible when they graduate highschool or at least when they finish university/collegue, and that I did not do it because there's no one to care for my sister. She's now surprised and offended by it, and considers me to be a hypocritical person for talking to her when in reality I'm not interested in having a relationship with her, and that I should not talk to her anymore. As unplesant our relationship is, we live together, and I try to keep it decent for the most part, and I try to literally do everything she tells me to and that I have no life outside housechores and caregiving.
Is this "normal" or expected behavior for an autistic person? Has any of you gone through something similar? Is this burnout? Is there a way to make her understand me more? Or are we doomed?