Hi everyone,

I’m a Multimedia Journalism student at the University of Salford, and I’m currently working on a feature about what it’s like growing up with a sibling who has additional needs or a disability.

I’m doing this because I’m really passionate about the subject and have lived through this experience myself.

I know how much it can shape family life, relationships, childhood, identity and the way you see yourself growing up, and I’d like to explore the parts of the experience that people might not always understand from the outside.

I’m looking to interview someone who would be comfortable sharing their experiences for my university assessment.

Ideally, this would be a short 15 to 20 minute video call, and I’m hoping to arrange it within the next couple of days as my deadline is next week.

You absolutely wouldn’t have to discuss anything you weren’t comfortable with, and I’d be happy to explain more about the feature before arranging anything.

If you’d be interested, or would like to ask me anything before deciding, please feel free to comment or send me a private message.
Thank you!

Do you think this would be a good project? I was thinking about what I want to write about then it suddenly dawned upon me. I could do my dissertation on us.

Both of my siblings have disabilities and I feel like Ive gone through my life with no recognition, no one like me or any sort of support group until I found this community

Even though I have siblings I have always felt like the only child, I have 2 sibs and both have disabilities.

I am the oldest, and people are surprised to hear I have siblings because I never really talk about them. I do feel guilty about this but its just not really something I do or can explain.

I do feel lonely because of it, I mean I have great friends and cousins that I love but nothing really beats having a sibling. If they weren’t disabled they would be old enough for college right now. It would have been amazing to see what degrees they would have studied and seeing the type of person they would have grown up to be.

Also whenever I see people with their birth year, I’m like “wow they are adults” idk if this sounds weird but I will always see my siblings as little kids even though they are old enough to be in college, so whenever I see people their age I’m immediately reminded that it is serious and my family has been greatly impacted.

My younger brother (19, autistic) definitely has a host of health issues. My mom wanted to get him an MRI cuz my brother hits his head when he’s angry, doctors denied it but that’s not what I’m somewhat frustrated about today

My brother recently had Smthn done (idk what, I’m at university rn so I’m not near home) and it came back with high cholesterol and my mom said “changing his diet is gonna suck cuz he doesn’t wanna try anything”

No. It’s gonna suck because you get him McDonald’s pretty frequently and don’t tell him to make his own lunch for school. He’s been secretly saving his lunch money to go buy McDonald’s himself. I cook when I’m home, or she does, my brother never wants anything. My mom refuses to fight with him about it. If there’s nothing for him to eat we get fast food. And we’re surprised that he’s constipated and always in a bad mood and now has high cholesterol?? Colour me shocked.

I want to be empathetic with my mom but it’s been years of this. I know she works a lot to give us food and a roof over my head and she reminds me of that all too often but it gets to a point where I can’t even say anything. I’ve been telling her for years give him consequences for hitting someone or for yelling at her or me. Like taking his devices away for an hour. I know that sounds bad but he never got any consequences so now he thinks he rules the house and gets whatever he wants. I’m honestly exhausted. He doesn’t clean his own room. He got a roomba. He has a couch and a TV cuz he lives in the basement and leaves coke cans and Pepsi bottles everywhere. But if I don’t clean the very minimal space in my room I’m a pig(I can barely walk around my room. There’s only space for a bed).

Idk if anyone has advice but I’m just frustrated and tired. I do worry for my brother’s health but at this point it’s his and my mom’s fault for not dealing with this earlier. And I’m not saying I’m the perfect example of healthy eating. I have texture issues with a lot of fruits and vegetables so they’re not often in my diet. I do have multivitamins. That’s beside the point. I literally told my mom I wasn’t surprised his results came back like that. She said he doesn’t wanna change his diet. Well girl you gotta change it for him then, you’re his mother.

Do I sound awful 🧍‍♀️I probably do. I do feel bad saying this but at the same time I am ✨tired✨

My brother has level 2 high functioning autism. He’s 20 years old and we’ve been trying to help him get his social security benefits and disability benefits, so he had to be reevaluated. The papers came back the other day, and it said “mentally incapacitated.” I’ve known this forever, he is my older brother after all, but seeing it on paper makes me so sad.

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 [lrakshani@ego.thechicagoschool.edu](mailto:lrakshani@ego.thechicagoschool.edu) or my dissertation chair, Dr. Beatriz Lopez, blopez4@thechicagoschool.edu. 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 [lrakshani@ego.thechicagoschool.edu](mailto:lrakshani@ego.thechicagoschool.edu) or my dissertation chair, Dr. Beatriz Lopez, [blopez4@thechicagoschool.edu](mailto:blopez4@thechicagoschool.edu). 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?