Living with my autistic sister

[Remilia Scarlet]

I originally posted this in r/TrueOffMyChest, but wanted to share it here too. I have made no alterations to the text.

 

I am feeling very overwhelmed emotionally right now so I apologize for any errors in spelling or if this ends up becoming a rambling post. It's also going to be very long so again I apologize.

 

I need to share some backstory about me to help you better understand why my sister is so important to me. I had a very rocky childhood. I was a very volatile child. I got into fights with other children very frequently. I was a problem child in school, was regularly punished by teachers and administration. I was eventually diagnosed with borderline personality disorder at a young age, which wasn't surprising. My dad died in front of me when I was eight, and after his death my nmom began her abuse of me. My sister was born not long after my dad passed away. I also had severe ADHD and my frequent mood swings did nothing to help my home and school situations. 

 

My mother hated me, and often singled me out to be the subject of her worst abuse. I have a scar on my chest from where she threw a dinner plate at me when I said I was not hungry one night. It required 17 stitches. My nmom was clever about her abuse. She always made sure that the beatings were never in visible areas, and the two times that CPS got involved she was always a model parent. None of us were ever brave enough to out her. I shielded my sister from the worst of her abuse. She was very rarely a target for her violence but she didn't get away unscathed.

 

From the day my sister was born I was smitten with her. I took it upon myself to take care of her with the help of my older brother, because our mother did not seem to care. My sister, Claire, quickly became attached to me, which infuriated my mom to no end. 

 

 My little sister is autistic. She is high functioning but to anyone observant enough it is very obvious that she is neuro-atypical. She has a very specific tic where she will start tapping a surface incessantly. It can last a minute up to several hours. It used to be very annoying but I have become accustomed to it. Our mother never physically abused Claire much, instead opting for emotional or verbal abuse. She would mock her autism and make snide remarks. She would berate her for her tics and neuro-atypical behavior. More than once I shut her down. She often made her (claire) cry. 

 

I hated her so much. I still do, not just for what she did to me, but most of all, because of what she did to Claire. Claire only ever wanted our mother to love her as a mother should, and being so young, she never understood why she did not. There have been multiple occasions when Claire would come to me and our big brother and ask such painful and difficult questions, and more often than not, tears would be involved.

 

"Why does mommy hate me?"

 

"What did I do wrong?"

 

"Why did mommy hurt me?"

 

But the one that tore me apart, the one that has kept me up for so many sleepless nights, crying and so angry at my nmom, "am I bad girl?"

I have had so many rage filled nights. Nights I would cry, and cry and cry for myself and my siblings. But most of all, for my precious little sister Claire, who out of all of us never deserved any of this. A sweet, innocent, little girl who only wanted a mother's love, and never got it.

I made a decision.

 

I could never take the place of a true parent, but I showered her with so much love. I was still young myself, at only 13, and didn't know much about autism, but I educated myself and how to handle it in young children. I learned about the different types, the spectrum, typical behaviors and how to help guide children suffering autism to productivity. I learned how to deal with the emotional aspect, and the communication difficulties. 

 

While my sister is high functioning, she has always had severe difficulty communicating with others, including myself, though it was less pronounced with me. She rarely understood humor and would get frustrated trying to figure it out, and had difficulty holding conversations with me, and still does today, although she has gotten somewhat better with time and effort. I began making a concerted effort to help her communication skills and socialization, which was made all the more difficult due to the abuse she suffered at the hands of our mother. My brother, who was several years older than I am, began to seek therapists who could help us further. Progress was very slow, as Claire was (is) very resistant to change. There were many fights and tears, but progress eventually was made. I discovered that Claire has an intense need to collect and sort stuff. I found that she has her desk drawers systematically sorted by sections, and those sections sorted by subsections varying by function. For example, her center draw is exclusively for writing utensils. She has small dividers for her pens, pencils and markers, and has those items sorted by type and color. 

 

Claire gets very fidgety and emotional when she does not have something to mess with. her emotional imbalance kicks into high gear and she begins to cry, which will eventually lead into a full-blown meltdown. After some time trying to find something that she could do to feed her needs I decided to try getting her into a game that I enjoyed a lot growing up -  Pokémon. She was about six at the time.

 

I came up to her one day to see her just sitting on the couch doing nothing, staring into space and tapping. I said her name and she turned to look at me, then resumed her tapping. I sat on the couch next to her and began rubbing the back of her head - she always liked it when I did that. We just sat like that for a bit, her tapping and swinging her legs and me sitting next to her and rubbing her head. I was hesitant to bring up the games because she had tried playing games before and ended up in a meltdown because they were so hard for her.

 

I finally broke the ice.

 

"I did more thinking about some games you might be able to play."

 

She did not reply to that.

 

"I might have found one."

 

"Okay."

 

I brought out my old Nintendo DS and Pokémon Diamond. 

 

"Do you want to try it?"

 

Claire looked at the game and looked at me, then took it, staring at it. 

 

"Is it hard?"

 

"No, it's not hard."

 

This was the first time I had let her use my DS. I showed her how to turn it on and access the game. I walked her through the opening few hours of the game. She still remained kind of aloof but made no comment about not wanting to play it. After some time I had her pause it.

 

"Do you want to keep playing?"

 

She did not answer.

 

"Claire, I need you to be honest with me. I don't want to force something on you that you do not want to do."

 

She looked at the DS in her hands.

 

"I... guess."

 

I sighed quietly to myself and took the system fom her, and placed it on the table. I adjusted myself and and pulled her over to me, wrapping my arms around her. This always made her feel safe and let her open up more.

 

"I won't be angry at you. You know you can trust me."

 

She mumbled something about knowing. I squeezed her tighter and she buried herself in my arms.

 

"Please be honest with me. I just want to help you."

 

Again, I got silence from her. I wasn't going to pressure her. I let her go and got up.

 

"I'll let you think about it, okay."

 

She mumbled something in reply and I went upstairs. Several hours later she wanted me to help her some more with the game. I am pleased to say she got more into it than she was before and soon became a full on Pokémon fan. It soon became apparent that I was going to have feed this obsession. I bought a secondhand GBA and all the original Pokémon games, and handed off my games to her. She began collecting plushes, figurines, posters, etc. I got her a keychain for her schoolbag and sticker books, the pocket guides, and numerous other odds and ends. Hear favorite thing, though, is the Eeveelution shirt I bought her. She wears it everywhere. To bed, to school, out on the town, EVERYWHERE. Eevee is her favorite Pokémon.

 

Pokémon has helped my sister so much. She always shows me her teams, what new Pokémon she caught, fan art, whatever. She loves to look up new facts and info regarding the series and sharing that info with me. It can get tiring, I won't lie, but I always smile and engage her. I love the series, too - I grew up on it, after all. But most of all, I love what it has done for Claire.

 

Growing up with an autistic sister has been the biggest struggle of my life. I love her to death, and I will fight tooth and nail to protect her. It has forced me to grow up prematurely. When I was 18, I got kicked out of my home, and it put a full stop to years of progress. I had to find a new place to live, and during that time I suffered a lot of heartache. I can't imagine how it impacted my sister. My siblings told me horific stories. She regressed hard. Years of progress went down the drain, and along with it her emotional imbalance collapsed in on itself. I spent days and nights crying and wondering what I would do. I used the money I had saved for several years to sue for custody. It was a long, drawn out legal battle, but the courts decided in my favor, and I was reunited with my sister. She moved in with me and my brother, and my girlfriend when I turned 19. We had to undo a year's worth of damage, and it was difficult, painful and sometimes nearly unbearable, but we made it through.

 

Having an autistic sister has taught me what unconditional love is, and that there are many forms of love, some not immediately apparent. Her form of love is to share what she herself loves. Another one of her love languages is to grip tightly to me and not let go. I learned this one early. When she needs assurance or to be loved on, she would grab me and hold on. She could stay like this for a long time. I don't dislike it. I enjoy the moments we get to spend together, just her and I, hugging and cuddling and just sharing our unique bond. And our bond is very unique. I don't have a relationship with anyone else like I do with her, and I would never change anything about her, no matter what. 

 

Because autism and all, she is my precious little cinnamon roll, and she is very sweet indeed.

[Mr_Skirra]

I'm literally to the point of tears. You're a goddamn amazing person. I'm a social worker who cares for children who are on the spectrum too, and I know how hard it can sometimes be. But the amount of love, effort, time and money you put into taking care of your sister is nothing less than absolutely incredible. You're an example for every sibling out there.

Besides that, I know I'm just a random person on the internet but I've told several people this before. If you ever need someone to talk to who isn't involved in your life, which can really be helpful at times, send me a DM. I will always make time for you. 

[LucianaRosethorn]

You sound absolutely amazing and I honestly wish the best for your family, if you ever need someone to talk to/ vent to then please feel free to message me. I don't know much about autism but I would happily listen and help you if you ever needed it, even if its something simple. =) 

[Honor_Hand]

Glad you got your sister in custody. Your story about how abusive your mother was really hit a spot for me. Mind you, I don't know exactly how that is but I can't definitely tell it's something that shouldn't be condoned or accepted (having abusive parents I mean). I also don't know much about autism but reading about the behavior she would often assume has given a pretty good idea. Your sister must really look up to you. Hope you guys continue that warm sisterhood together for many years to come.

 

Joining the posters above, if you ever need someone to talk about, feel free to send me a PM. I'm a great listener and could offer the best tips and comprehension I can.

[Mikel]

You are an amazing person for sharing your story, as it brought me to tears reading everything you have been through and having the strength to look after your sister. As someone with autism myself, I can relate greatly with her, as I too have had a hard time getting into certain video games, such as MMORPG’s, which I admit that they turned me off after a few hours back then, but I found one I could get into (Phantasy Star Online 2) which forever changed my perception of the genre, and since then, I was able to enjoy them! I wish the best for you and your family, and for you and your sister to continue the strong bond you guys have now!

 

As with the other posters, if you need a friend or someone to talk to or vent about anything with, you can send me a PM on here or talk to me on Discord! I’ll do my best to respond whenever I can. 

[Remilia Scarlet]

Thank you guys so much for your support and kind words. It means a great deal to me.

[ProfBambam55]

also from the school of the senslessly abused who grew up to find love for the world despite the odds being stacked against it...just a quick shout out as I don't want to steal any of your thread's thunder...cheers...

[thepeaguy83]

Growing up in the 80s and 90s, my family treated me like gold. Compared to other autistic people out there, I'm one of the fortunate ones who has a good network. Not having a good network breaks a lot of us. Good for you for looking out for your sis, btw.

Edited March 4, 2019 by thepeaguy

[LucianaRosethorn]

24 minutes ago, dropsofjupiter said:

Two weeks ago, he ended his life after a year and a half of incurable torment. He was my hero. He's with God now and past his sufferings, for which I am very grateful. My mom called him “an innocent”. I have a wonderful life because of all that he did for me. Autism is difficult to live with, mostly for the person who has it. If I had the chance to do it again, knowing all that I know now, I would do it in a heartbeat. But this time, I would be a better genie. I would spoil him and love him as if it were my only mission in life. He was soooo worth it.

 

I am so sorry he passed away but also really happy he had such an impact on your life, I'm more than certain he also knew how much you loved him. =) It's not easy going through a death so if you ever need someone to talk to then please also feel free to do so, I would love to hear all about him if you did.

[Fenrirfeather]

I’m a hopeless clown and jokester to which nothing seems holy, the right address for when one needs to have their mind taken off the present situation but (still) catching up on the 101 of suave words of comfort between adults. After years of isolation and again made to play sitting ducks right now, I’m not there yet (still seeking that magic wand to wave and make it go whoosh).

 

Even so, I want to try to convey my feelings to both of you and hope they can be a small source of an appreciating sigh or even a small smile. 

 

I want to tell both of you @Remi-chan and @dropsofjupiter ‘thank you’. There is something common found in what each of you said and more so in how you said it - despite that I understand that you currently find yourselves in grossly different circumstances.

 

Thank you for sharing. 

 

And thank you for acting as if having a loved one with a formal impairment is normal. Because it is. It’s easy to proclaim such (and, of course, it’s words that can be a first, important step to put forth an idea or ideal into reality) but it is people like you that prove it. Everyday. Small treasures like these are sacred. A person with an impairment - a disorder, a syndrome, an illness - is human like everyone else. Not less of a person but as brimming with life and joy and despair and anger and hope and needs and wants as everyone out there and both of you have spoken about your experiences in a way that hints at that you know.

 

And although I’ll never be in a position to benefit from your generosity and empathy in all the great little interactions in everyday life, knowing that you are out there - that you have been living with that attitude until now and treating those around you with an uncanny understanding that they’re as similar to you and others as they seem to be different from everyone else - is a small source of happiness to me. 

 

Thank you.

 

[AJ_Radio]

You yourself remind me a lot of a kid who is now the same age you are. He turns 23 in a few months, but that is close enough, because you were both born in the same year (1996).

 

He was autistic and very much volatile. It took a couple years for me to find out that he was physically and sexually abused by his uncle. Even 20 years later he still sits in a prison cell, but it's very unlikely this kid will ever visit him because of the damage he caused to him.

 

He got into a lot of fights starting from kindergarten up through fourth and fifth grade. He was suspended on several occasions and the school even considered expelling him because he was too much of a danger to other kids. Long story short, he was an attention seeker and his way of releasing was anger was getting overly aggressive whenever you didn't let him do what he wanted to do. Now a lot of kids have this attitude but a good majority of them forget about it or they do something else that occupies their attention.

 

The last I heard of him was in the summer of 2016 when he was begging my dying grandmother for money. He was 20 years old, and from I got of him he was rather short and stocky. He is still the victim of child abuse and he is extremely autistic.

 

This is a very sad story you posted, and I wish all the best for your sister because when an adult abuses them at a very young age, that leaves a lasting scar that will stick around even well into adulthood.

 

Pedophiles, people who take pleasure in abusing little kids deserve absolutely nothing and should be thrown in prison. Not surprisingly, they are often the target of other prisoners because they themselves probably also got abused and hated by their parents and guardians.

 

I wish you both the best and hope you can work towards a better future for the both of you.

[niclick]

This is the first post I have ever read in this forum considering I've join years ago. I almost cried. Anyway, good luck to you and your sister. I hope you guys are doing okay now and living life to the fullest!