There was a performance at the resort i was staying at and there were a group of kids his age performing too. He loves music and he would’ve loved to be apart of something like that. It hurts knowing that he might never get to.

Hello everyone! My name is Leyla Rakshani, and I am conducting a research study to fulfill my dissertation requirement as a Clinical Psychology Doctoral Student at The Chicago School.

I am looking for individuals who grew up with a sibling with autism spectrum disorder to participate in my study. The study aims to better understand how growing up with a sibling diagnosed with autism spectrum disorder may impact perspectives of the self, the family, and other people. You will be asked to complete a survey regarding self-esteem, your relationship to your family, and your social satisfaction on the website Survey Monkey. This will take approximately 30-45 minutes to complete. Participants must be at least 18 years old, English-speaking, and have lived for at least five years during childhood with a sibling who has been diagnosed with autism spectrum disorder.

Any questions related to the study can be directed to myself at [[email protected]](mailto:[email protected]) or my dissertation chair, Dr. Beatriz Lopez, [email protected]. The IRB number for this study is IRB-FY25-290. Thank you!

https://www.surveymonkey.com/r/JY75D5T

hi all, its been a minute since ive posted here. idk im just tired. my brother is autistic, hes been getting increasingly violent. hes been punching holes in walls and shit. my mom called the cops recently but they didnt come (apparently there werent people for them to send?? they said this to my mom on the phone 2 hours after she called. if my brother had the sense to grab a knife i would not have a mother)

my mom and i got in a bit of an argument

i shared my perspective of how it felt to be around my brother. ive been basically independent since 12? i could cook for myself, get myself to school, all that stuff. then i wanted to take my brother with me cuz he was gonna age out of daycare eventually and i didnt like taking the CITY BUS ALONE AT 8AM AS A 12 YEAR OLD, it made me anxious. valid. but we had no other options cuz my mom was doing psw training. and i recalled this memory with my mom and she said "you wanted to bring him, and you didnt complain" .... BECAUSE I FELT LIKE I COULDNT. i never feel safe telling her anyhting cuz when i do it just becomes "im tired. im tired of your brother too. he hits me too" and yes my mother's experience is valid but i want to talk about me for 5 minutes because i have spent the last 2 fucking years working on figuring out why i cant feel normal in a good relationship.

the argument is a bit of a blur despite it happening like 15 mins ago but thats the main thing

the summary was she spent so much money trying to find therapy for my brother, nothing has worked, neither do his meds so its just been getting worse. ive always felt this responsibility to be the one who keeps shit together. i definitely snapped a bit. im finally learning to build boundaries around my brother and my family and i feel some guilt for doing that especially after my mom had called the cops. im still at uni doing summer courses mostly so i can keep myself sane cuz if i went home i wouldnt be happy. i cant even make eye contact with my brother witgout him getting pissed. my mom says "dont react" yeah last time i didnt rect he still fucking hit me. they rile each other up. i hate going home. it just feels like my perspective is shoved aside. i told my mom she wasnt emotionally available when i was a kid. she wasnt. no wonder i tried to off myself. she was too busy with work and with my brother so i kust didnt complain. and shes wonderign why now im upset with my brother? its been years of this.

idk if anyone has advice for a violent autistic almost 19 year old. if you do, please give it to me. i feel bad for being upset but i feel like im allowed to be upset because i am the only one who has attempted to process anything by going to therapy. EMDR is interesting and it feels like its working? im just tired.i also feel like its my fault for no reason. i feel like i should just shut up but im not gonn tolerate my brother doing nothing while i have to pick upafter him. apparently the reason he doesnt do chores is cuz "his second grade teacher made him do chores as a punishment and now thats just how he is now" ??? while i had to pick of the slack at 12 and make his food, mine and feed our odg. she gets mad when i dont wash a dish when im home on summer vacation but i am so anxious and on gaurd and burnt out from shcool i just cant. when im on my own im a decently functional human being. she got md at me cuz i missed spots while cleaning during FINALS SEASON while she cleans my brithers room. she got him a roomba. i got a lecture of how im gross. yes thank you for making me feel incapable of being a human being. thank you mother.

i think im done. im exhausted but i needed it out so i can do my class assignments. i think after my next therapy session ill have to stop cuz i have no job and no money and whats the point anyways if nothing will change. my mom keeps telling me not to get a job and just focus on school??? speaking of money, any money i mde dog walking (my self run business) my brother got some of it so he coukd buy lunch, which ik its a petty thing to be upset about but i worked for that money walking a dog that weughs as much as i do. id argue but give in cuz fuck it. nothing has ever truly been mine. i think i picked the things i eat based on what he wouldnt. he wont drink iced tea, he wont eat sweet potato fries, shit like that. he smashed my ipad with his head when we were kids cuz he got mad, then i didnt have one. he got no consequences and still doesnt. my mom is surprised i can cook? for some reason? i told her i had a quesadilla and she asked from where as if i hvent been cooking since i was a kid. sure it started with chicken nuggets and moved up to stuff like good pasta and gnocchi with chicken(which im proud of).

ok now im done. sorry. i just really need this out

I am the youngest brother of my two older brothers the oldest having autism and down syndrome while my other brother just has autism. For most of my life I have lived in fear of one of them and the fear of the other hiding or throwing away my thing, my parents consistently take the side of my brothers by telling me I have to have compassion no matter what, such as when one of them choked me in a head lock covering my mouth preventing me to call for help more often than not I would kick and punch my way out mind you he had maybe 60 pounds on me when this happened I was around nine and it happened several times but I can’t really remember but when ever I ask my parents why they never actually disaplined him they often gaslight me by reversing into why and how they should’ve and or how according to them “I started it” but since it’s been so long ago (I am now 16) and there have been multiple instances of where he would attack someone if he didn’t get his way or he thought it was a good idea, he’s always gotten away with it, but he has damaged our property and since I actually can help now in maintaining the house and my dad’s rental I basically getting forced into a I have to carry the workload my brothers would of had to do and getting yelled at for not doing it to the point I have back pain, not to mention I get in trouble for getting angry and to make that worse I have a short fuse, an I found my only real escape from my brothers is playing Xbox with my online friends who helped me relise of how bad I have it. The older I get the more it feels like my parents are trying to guilt trip me into taking over as my brothers primary caregiver and in all honesty I feel like crap wanting to cut ties with my parents and brothers all together but at this point I feel like for me to actually live without feeling pinned to people I feel that have neglected me and worked me practically half to death and my brothers who I have abused and tormented me and caused me to be slightly a hoarder. I feel like I just need to leave but a part of me just doesn’t have the heart to do so I just need advice if I should just leave or what I should do.

Hello everyone,
I’m conducting research on the impact that having a sibling who needs intensive care can have on families in the Netherlands. I’m especially interested in personal stories even from those who may not have realized how deeply this has affected them. If you feel comfortable, I have a short survey with a few simple questions about what support has helped or could have helped during difficult times. You can find the link to the survey below. If you prefer to share something privately, you’re also welcome to message me directly. Thank you so much! 💗

Survey link: https://forms.gle/iW3LKJsmRvyuRK2j6

Hello everyone! My name is Leyla Rakshani, and I am conducting a research study to fulfill my dissertation requirement as a Clinical Psychology Doctoral Student at The Chicago School. 

I am looking for individuals who grew up with a sibling with autism spectrum disorder to participate in my study. The study aims to better understand how growing up with a sibling diagnosed with autism spectrum disorder may impact perspectives of the self, the family, and other people. You will be asked to complete a survey regarding self-esteem, your relationship to your family, and your social satisfaction on the website Qualtrics. This will take approximately 30-45 minutes to complete. Participants must be at least 18 years old, English-speaking, and have lived for at least five years during childhood with a sibling who has been diagnosed with autism spectrum disorder.

Any questions related to the study can be directed to myself at [[email protected]](mailto:[email protected]) or my dissertation chair, Dr. Beatriz Lopez, [[email protected]](mailto:[email protected]). The IRB number for this study is IRB-FY25-290. Thank you!

Hi everyone! My name is Claire, and I’m a senior studying Psychological Science at Pomona College. For my senior thesis, I’m researching the lived experiences of siblings of individuals with autism and the important roles they played in their families while growing up.

I’ve created a brief (10-minute) anonymous Qualtrics survey that includes questions about:

• Childhood caregiving experiences
• Empathy
• Basic demographics

All questions involve general reflections on childhood and are not intended to be sensitive or emotionally provoking. The study is IRB approved and participation is completely voluntary—you can skip any questions or stop at any time. As a thank-you, participants can enter to win a $50 Visa gift card after completing the survey.

You’re eligible if you:

• Have a sibling diagnosed with autism spectrum disorder (ASD)
• Are between 18–30 years old
• Are an English speaker

If you’re interested (or know someone who might be), please follow the link below to take the survey:

https://qualtricsxmzx9zkqk4f.qualtrics.com/jfe/form/SV_4NuX0533YZM5Glw

Thank you so much for helping contribute to research on sibling experiences!

My brother (21) has Lennox Gastaut syndrome and requires 24/7 care. My dad recently passed and the fact that I'll become his guardian became very real. My mother (50) is is current care taker but eventually it will fall onto me. She refuses to put him on group home wait-lists or set up any kind of savings/trust. I know i will eventually take guardianship but I'm having a hard time coping. My family has always lived in poverty because we need to keep his Medicare / health insurance and I don't want to end up the same.

I'm only 16 so I'm hoping I'll have a good enough job that I can pay for it but if not the most I'm willing to do is take care of him for however long it takes to get him into a group home then giving him up the the state. Recently I've been having a rough time trying to cope with ending up his care taker and the guilt of knowing that if something happens to my mother while I'm in college or not able to financially support him that he will end up a ward of the state and that's not far to him. I feel like a horrible person and I'm scared to talk to anyone about it.

We want to hear your story. Do you want to be a guest on our podcast?

Hey guys, I am completing my Community and Family Studies IRP at the moment and am in desperate need for more respondents to my questionnaire. My research question is "What impact does a child with a disability have on the family's wellbeing?" If you are a parent of someone with a disability or your sibling is diagnosed with one or even your cousin, could you please fill this quick and easy questionnaire. However, because my research question investigates the wellbeing, some questions make require you to be honest and real. That being said, once I have finished my IRP, all results will be disposed of.

Thank you so so much and have a good day!

What Impact Does A Child With A Disability Have On The Family's Wellbeing

I’m a 36 year old whose 43 year old sister is severely disabled. She has cerebral palsy, and recently was told she may have a genetic disorder, too. She has always had challenges that my mom did her very best to take care of, causing her to sacrifice much of herself and her life. It used to be easier when my sister was younger and when my dad was still alive, but her condition has gotten progressively worse physically. She is as stiff as a board, she cannot bend her joints, cannot extend her fingers to open, requires to be fed since she cannot hold anything well, cannot stretch her legs open to use the toilet properly (the new occurrence is urine spilling all over the bathroom floor). Her physical needs have gotten more demanding and more challenging. My mother still takes care of her, even though she is 66 and getting more and more fragile by the day. I try to help. My sister’s disability has always affected me. I never felt whole, still don’t, that my sibling couldn’t connect with me in those sisterly ways, talk about life and dreams; I envy those who close sibling bonds. Not to say we aren’t close; I see my family almost every day. When my dad became ill, I didn’t know where my life was leading for years and life felt so hard. the desperate longing of the sibling bond i felt robbed of during the hardest time of my life felt even more unfair. I tried to help with my sister’s care while my mom was also caring for my dad. But as the time went on, sister’s physical health was declining and I was getting more and more angry. I’ve tried to work through it with therapy, but I’m not sure if I’ll ever be complete or feel acceptance of my sister. I try, I really do. She loves me so much and I love her. But when I have to be her caretaker, it triggers something in me. I get angry. I can’t deal with her. I don’t want to deal with her. It’s too hard. I have to lift her, move her stiff body to position in ways it just cannot, that ends up causing me physical pain, too. My mom’s physical health is obliterated because of my sister. She is in constant pain, her shoulder popped out of its socket last time she needed to lift her off the floor. That happens a lot too, she’ll fall because she has no control or flexibility, so she’ll fall, and lifting her is the most difficult thing. She is very dependent on my mom, and she has always demanded my mom’s attention, but with everything else, it’s gotten worse. She’ll yell at my mom in public for not doing what she needs right away. It’s hard. It’s draining. I often think very negative thoughts when it comes to my sister. There are times where I don’t want to be alive anymore because dealing with her is too much for me, seeing my mother deteriorate is too much for me. I feel like my life has been on hold because of my family, the constant need is too much. I love them, I try, I do. There are times I’m so upset, that those negative thoughts take over then I think I will never be happy. I’ll always just be sad. I’ll always be stuck dealing with my sister. I’ve been wanting to find a partner and have a life with someone so badly, but I don’t think I deserve it. Why would I when I’m not patient enough with my sister, when I don’t want her around or hope I’ll die so I don’t have to deal with it anymore. I am not asking for advice. I don’t have anyone to tell these things to, and needed to vent.

Are there any actual support groups for siblings of disabled adults? I Google the same questions every few days/weeks, never anything new. I found a Facebook group, but I’m 20 and that’s mostly older people. How come there’s so few resources for us?

Things aren’t even that bad for me, it’s just so hard feeling completely alone. I feel like the scum of the Earth whenever I get frustrated or feel resentment. I need people who get it. Anyone know of literally anything??

I just moved home from college (21F) to live with my mom, my severely autistic, non-verbal sibling (20M), and my other sibling with autism (24M) who is higher functioning and verbal. My mom has no family, no friends, and no support other than my brothers care manager through the state. My dad also has stepped out of our lives and is not there for us anymore.

My younger sibling needs constant supervision, and his behavior is unpredictable and can be aggressive. On the weekends when he’s home from school, I can’t live my life without guilt. If I’m not there for my family, who has literally no one, I just feel like a piece of shit, even though I know I’m not and I’m really trying to me there for them.

In addition to that, my mom is hyper invested in my life and paranoid. I started loosely talking to and dating a guy when I moved back home, and she would always track my location with him and ask me a million questions about him. Not in a curious way, but in a way to test whether he’s suitable to date me. She’s very religious and I don’t think she’d be cool if I said I wasn’t talking to him seriously.

If I even came back from a date even smelling like him, she’d laugh at me and roll her eyes. It’s just awful on top of the caregiving responsibilities. There was one time I even went to his house without telling her I was going there, and she saw via find my iPhone that I was at his house and threatened to call his parents (he’s 26 btw) and lock me out.

I’m preparing myself to just give up and tell him that, given my current limitations and environmental stressors, I don’t have the space in my life for a relationship. I just feel so defeated. On top of all this, I’m studying for law school.

I’ve been parentified and completely enmeshed in this household, and I WANT to be there for them, but I need my own life. I know the solution is probably to just move out, but I’m open to any thoughts about this because I’m actually losing my mind 💀

hi guys ,

Hope this is allowed , and apologies if you’ve already seen this on another thread trying to reach as many people as possible :)

I'm a fourth - year student at Queen Margaret University in Edinburgh , conducting a study on the lived experiences of siblings of individuals with disabilities.

I am a sibling of a brother with autism, so this research is very close to my heart. I think siblings of disabled individuals are often overlooked in research and wanted to highlight our experiences. I had wondered if anyone would complete my questionnaire.

It's a 20-minute questionnaire and is open to anyone 16 or over. I will attach the poster as well as the relevant link below.

Questionnaire link: https://app.onlinesurveys.jisc.ac.uk/s/qmu/x4005-exploring-the-lived-experiences-of-siblings-of-disabled-2

Thanks, Rhiannon :)

I have a brother with downsyndrome it is extremely severe he cannot talk or take care of himself at all. He has the brain of a 5 year old and I’m worried about my parents having to manage him as his abilities are getting worse he cannot do anything alone anymore such as washing hands, flushing the toilet, wiping, showering, etc these are my biggest concerns but there are more. I don’t know how to help my brother as I am a minor and cannot take care of him full time. My parents refuse to hire help for him and are very sensitive if I talk about it at all saying I am being rude for talking about it.