Caregiver for autistic brother
Hi. I’m 23 and my brother is 26.
I know most ppl think of autism as a blessing and that it’s ableist to talk about how hard it can be. I recently read a thread from high functioning autistic ppl on Twitter about how there’s too many stories about siblings of autistic ppl and their experience. I get that, I do.
i just feel really alone in my experience as a caretaker of my brother. He’s not only autistic, he has hallucinations, seizures, severe ocd, learning disabilities, weight management issues, and more.
when we were children he was physically abusive to me and my other brother. Not just a casual hit or two, but straight up targeted abuse towards us. We used to beg my dad to stay home from work to stop him. My other brother is in therapy now for it. My parents never knew about the extent of it until we were way older like 5th grade, as we weren’t really allowed to speak about it without fear and we didn’t know what was wrong with him
until high school I experienced this abuse until he was put on meds that worked for him.
howeevrr he has other issues that have contributed to other problems. Last week for example I walked in a room and like countless times over the years I found him touching himself. He’s got very little self control and it’s frustrating bc as a woman I’m intimidated and scared of him, but he’s also my brother and I’m a caregiver. I was bullied for his actions in middle school as well. He was selectively mute in the school for no real reason. He could speak at home and other places. He later told us that was bc he thought and the voices told him it would be fun to torture us. I used to get bullied by classmates about how weird he was and why wouldn’t he speak. When you hear that kinda thing u build resentment. I don’t hate him, but I do have this build up of anger inside of me bc of those types of actions.
I know this is probably ableist post. I just have no one in my life I have been able to vent to about this. As a child I was scared, as an adult I’m resentful, and now I’m just sad that I lost out on my childhood.
@Wavescurrent7622
I saw your post and hope all the best for you as you care for your brother. I don't have any first-hand experience but see how much you must love him despite his challenges. Take care of yourself.
I’m sorry. You have a dual stress—dealing with the difficulties of caring for your brother, and feeling like if you say anything you will be castigated. So it’s not just feeling bad, you seem to feel bad about feeling bad, which is just so much to put upon yourself. the way you feel is the way you feel, and it should be okay to have our feelings. It doesn’t mean you will stop trying to do your best as a caregiver or whatever else. It’s also reasonable to feel all these things in your situation.
I am sorry you went through that and maybe you get an additional caregiver? It might be good a find a counselor and perhaps an autism support group. No one should have to go through that alone.
@Wavescurrent7622
I know it's difficult to keep going when you feel so down about your situation but it's important to keep pushing, even if you don't feel like it. I am on the other side of this story because I have autism, hallucinations, depression, anxiety, and ADHD. I have three siblings, two younger, one older, and I live at home with my parents. I rely so much on my mother that sometimes I feel bad for her, because she has to deal with my meltdowns and my odd behaviors. But no matter what happens, she's always there for me and she says she still loves me. I have never said that I love her too, but I still feel it. I think, no matter what, your brother still loves you. Not just because you're family, but because you've been there for him despite everything he's put you through. That's something special and I think you should always remember that. Anyway, I hope the best for your future.
Your brother is more than autistic, he has psychosis. As for the selective mutism, that’s anxiety.
However, there are lots of other people on the spectrum who aren’t violent like that. I
@Wavescurrent7622
I think your concerns and feelings are more than valid. Your anger and resentment are completely understandable. I don't believe it's ableist to want to be safe and free from discomfort around someone who acts out the way he does. Whether or not the person has one disability or multiple disabilities, others around them including family and caregivers have the right to be free from abuse by the person.
I hope you can find am effective professional counselor to work through your feelings.
Hi, I myself do not have an autistic sibling, but what you are describing sounds very traumatic for you. My dad has Alzheimer's, and I did take care of him at my home for two years. My dad before this was the most wonderful person ever. After the disease, he would hide scissors and threaten to stab my young adult children who still live at home. He threatened to stab my husband in his eye with his fork. He threatened to strangle me with his belt, and he came towards me once undoing his pants. I was trying to help him, but I was afraid of him. All of the above actions were unprovoked, and we all slept with our doors locked at night. I know I developed a form of PTSD from all of that after a couple of years, I can't imagine how you must feel after so many years of that. I know that you love your brother and want to help him, just like I loved my dad, but you are important, too. It sounds like you have been a wonderful sibling in spite of the circumstances. I can't speak for others, but I know for myself that putting my dad into a personal care home was the best decision that I ever made. I was so worried about how his quality of life would be there, but he actually was quite happy and they could give him medications there that we could not give him at home. I hope above all that you have other caregivers and community resources to help you.
