The Invisible Child

"You have to understand." "He is special." "He needs special treatement." "I'm sorry but I have to help your brother." "You need to act like the mature one and just deal with this." Sound familiar? I am nine years younger than my brother. He was diagnosed with aspergers syndrome before I was born. I get that he has to be treated special, but I have a hard time understanding all the rest.
One example is all the pain I have to go through. The physical things he does like push me or hits me seem easier to handle than the rest. The physical pain is only there for generally not too long, but then it turns into emotional pain. The emotional and mental struggles I have been going through have caused me to feel like I am going insane, and I mean it litterally. Even my parents contribute to this pain. They seem to hold me to a higher standard then my brother and even everyone else around me. Sometimes I feel like if I am not the best, then I have failed them. Whenever I do seem to "fail" is when I generally get more attention. Otherwise they either are trying to help my brother or be away from everything, which includes me. They hurt me even though it is unintentional, but that doesn't make the pain go away.
Another example that I have a hard time understanding is why there are all these helps for parents and people with aspergers, but siblings recieve hardly any help. This site was the only thing I have ever found I can vent to. I can't to my parents. I don't want to make matters worse for them or be anymore of a disappointment. I can't talk to my friends. They so do not understand, and anytime I have ever tried to talk to them about it, they change the subject. My family members outside of immediate all try to help my brother, and when I finally get noticed, they do not understand at all what it is to live with him. Then they try to give "words of wisdom" that only make me want to just not listen to them.
For a solution to everything, I try to shut myself in my room. The ony problem is most of my social skills are struggling because of this. Also my parents get mad at me for being in my room all the time, but it feels like my only escape. Though even when I escape to my room, my brother will come in constantly to get my attention, so even that isn't successful.
Do you ever feel invisible? Do you ever feel forgotten? Do you feel like no one understands? Do you feel like you can't live up to all your parents want you to be? Yeah, me too.
sampeace sampeace
18-21, F
8 Responses Aug 4, 2011

if you read my post about my brother with AS i am sure you will relate. everything you said is similar to what i have gone through.

First of all the we us they talk. Who is we, everyone in the world who is not Autistic and has an Autistic sibling? That you would consider your own family to basically be an outsider. That is the crux of the entire problem. In response to Siri 4s response. What a condescending load of crap. You stereotype that because I have Aspergers I can't see things from other people's perspectives. Well no one can fully but I am actually pretty good at it, doesn't mean that other persons perspective can't be totally wrong, petty, selfish. You have no clue what it is like to have Aspergers, none whatsoever. You try to tell me I have it easy, well to be frank, you don't know what the hell you're talking about. So every Autistic person who works hard and tries to make something of themselves, isn't really Autistic has it easy discounting that they oftentimes worked ten times as hard as their peers to get there. Only the complete screwups truly have Aspergers, is that how it works? That way the stereotype can always stay negative. Try to put yourself in your Autistic siblings shoes for just a second, just one second and ask yourself how you would enjoy all the special attention of being labeled a retard by society. You want to say everyone who has an Autistic sibling ends up being an "emotional punching bag". Not true, thats your individual experience, well stop generalizing and stereotyping millions of people as bullies. My "limited experience" how bout elaborating on just what the hell that is supposed to mean. How that is not supposed to be insulting. Now lets talk about how my very birth is some horrible burden. I suppose like most children I crapped in my diapers got in the occasional petty argument with my parents and as a teenager stayed out late and didn't always tell my parents the whole truth about where I was, ok but that is called having children, I cost plenty of money sure. Although I almost never asked for things for my birthday or Christmas. Another one of those terrible "asocial" Aspergers traits, I never ever asked my parents to buy me an item of clothes to try to fit in or look cool and I took pride in fixing up my own clothes and wearing them till my mom insisted they were worn out. Special Asperger related costs then, that overwhelming crushing financial burden. Uh I lose stuff a lot so my mom had to buy me a new coat every once in a while, maybe a few other things like that. We are getting up into the hundreds of dollars here in special Aspergers costs over an 18 year period, wow. They went to my school and got into a couple fights with teachers in the process of me getting an IEP. Ie an experience that every parent who cares about their child's education should probably go through at least once. Was it a crushing emotional burden. Maybe a little, I didn't get perfect grades and wasn't a perfect square and that made my mom upset, I refuse to feel guilty about that. I am an adult, I am a man, and I am an older brother. Deal with that you no doubt prim and proper middle class white woman with your cute cat picture, I am sure you project an image of yourself as soft and sweet and gentle and caring and nice. Autistic people are such huge pains in the *** their familiy members must be absolute saints for still loving them. As for all the people who murder Autistic family members and spend no time in prison why they're just human. Only a saint could put up with a real life Autistic, the terrible burden. Just having one as a sibling is reason enough to need group therapy and a big old swig of Prozac, oh how the demon burden spreads its tentacles. If only we had never been born huh? Is is just possible that some of you are using your Autistic sibling as an "emotional punching bag" for all your baggage that really doesn't have anything to do with them. Remember too if we are talking about biological siblings they are your blood, they have your same genes. Though one of your parents may not you having the exact same genetic makeup as your Autistic sibling, well you are probably a little Autistic too, and quite likely so will be your kids. If you think your sibling with essentially the same body as you is a born wierdo what does that make you? Put that in your pipe and smoke it.

Excuse me, I know that you feel like you have some stuff to say, but we do too. I can't understand exactly what you have gone through just like you can't understand what I have gone through. Please remember, that I am not trying to attack anyone here. I am venting about problems that I have had. Sure this isn't how it always is. Sure my posts are more on the negative side of my life. There are positives, but I need to express my feelings on these things that happened to me. If you do not agree, then fine, but I would ask you keep in mind to be a little less critical and harsh. I don't wish to speak for Siri or anyone else, but I believe no one is saying that because you have Aspergers you can't understand. What I am saying is that because I haven't been in your shoes and you haven't been in mine. So please use more respectful diction.

I feel like your story is exactly like mine, only my little brother is 17 and I am 21. I was lucky enough to have my aunt, a very loving and caring Christian woman who had a lot of wonderful advice for coping and was someone who would lend me an ear. <br />
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Your parents hold you to a higher standard because their hopes for you as a "normal" successful person are doubled, because your brother may not ever be able to succeed like you can. It's true that support groups for siblings are hard to find, and they tend to be the emotional punching bag for both your brother and your parents' frustrations. <br />
I'm here for you to exchange stories and such -Siri

Im sorry your older brother is a jerk to you. There is no excuse and that your parents are unfair to you. That is however an individual experience, having Aspergers is not an excuse for someone to act that way or a guarantee that they will. I have Aspergers and I never hit people, my little brother who doesn't actually tries to hit me. He is totally my moms favorite and she spoils him and thinks he does no wrong as opposed to me who is blamed for just about everything. I don't need any "special help" any more than anyone else. I suppose I did have some accommodations at school but at home I did plenty of household work from dishwashing cooking cleaning and even babysitted my brother when he was younger. I just don't like people promoting stereotypes, that Autistic people are permanent children, they never grow up, their a huge burden and drain on the life of their parents and siblings. You know how that feels for people to think I was born a mistake and a burden, a drain on society, an invalid. I am none of those things thank you very much. Also keep in mind siblings often fight with each other. I feel like sibling support is probably a website that is primarily about bitching and dehumanizing autistics and gaining some sense of superiority. My little brother thinks he is superior because he drives a car and I don't and hes my moms favorite, well I have a job and he doesn't because hes lazy and quit his job, mommy still bought him a car. She then gave him all of the money that was in my college fund to him because basically she thinks I'm a retard with no future.

Chavo, every AS case is different and every family case is different. Autism is a wide spectrum and the fact that you seem to be able to deal with your symptoms better than others is very lucky, but I don't think every AS kid has had it as easy and I don't appreciate your negative perspective on the siblings of AS kids.

People with AS siblings not only have their own life problems to deal with, they are often expected to be stable and understanding while often simultaneously being used as an emotional punching bag for their AS sibling as well as their parents. This may not be the case every time, but you have to understand that not every family is like yours.

As someone with AS who is also aware of his issues, you should take note that people with AS often can't see things from other people's perspectives, so be aware that we have feelings too, and you are not the only one struggling to deal with your AS. It hurts that you would say such terrible things, but I know you are speaking from your limited experience so I understand.

We love our AS siblings and wish the best for them. As it is hard for you to understand why we may act one way or another, we are wondering the same thing. We do not think we are any better than you. In fact, my family celebrates my brother's exceptional intellect and skill and try to foster these skills so that he can do well in life. When my brother is ungrateful and disrespectful, it is depressing to us and we may feel negative towards him.

Your family in particular may not deal with your AS in the way that you want them too, but that doesn't mean you can categorize every other family as the same as yours. It is insulting to me but understandable, as you may have trouble seeing it from other people's perspective.

The fact is that dealing with AS IS financially and emotionally and physically draining, we cannot deny this, but most of us still love our family members and do not think little of them.

I don't see my brother as a burden, and rarely do I pity him. I know he knows right from wrong, that he knows he should do the things we ask him to do. I think he uses his AS as an excuse very often to be lazy but I can never know for sure because I am not him. --Siri

I totally understand you guys.<br />
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Moving abroad helped me a lot. I felth happiness and peace for the first time in my life.<br />
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My challenges since I moved abroad have been to deal with the effects of my childhood which really make it difficult for me to feel confident, maintain friends and relationships and reach out for people as well as to accept others and develop normally in difficult working environments.<br />
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There is an organisation which supports asperger siblings but I the thing is that this site, since it is anonymous is so much real. In experience project is the only place in the web where I have read testimonials so similar to my experience. In other webs is more like "My brother/sister has Asperger and is frustrating sometimes but I love him/her". The violent stories and sadness a lot of us have gone through does not come out in public easily. I couldnt share what I share here if it was not anonymous.

I agree. I like how I can share who I am by my words but not have to be known who I am with my identity.

omg i am 13, my sister (with asspurgers) is 11. you just totally described my life. its nice to know that there IS someone like me on this planet

Don't worry. This place is a great place to connect.

Hi all,<br />
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My sister has aspergers and is nearly 40 yo. She was diagnosed in her late 30's. This is very late though all throughout her life she was either a bit autistic and or had personality issues...mainly due to infancy of diagnosis of aspergers during the 70's. My parents (mother in particular) received no support (was even ridiculed herself for enquiring with doctors that there was something wrong). And sorry to say not a lot of support from my Dad as he worked night shifts for most of our growing years. My parents are both retired now. My Dad still doesn't help my Mum with dealing with my sister. He just complains about her behaviour.<br />
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I am 6 yrs younger than my sister. I know exactly what you are all going through. Growing up with my sister was very hard. We had some good times but I grew up, she didn't. She got worse the older she got...though I believe that school forced her to comply a little...or at least it forced her to be around "normal" peers. As soon as she left school it got worse and worse. She has been long term unemployed for more than 20 years now. <br />
Thankfully my sister now lives on her own as no one can cope with living with her. However she can't cope and as such she relys on my Mum daily. She will phone my Mum all hours and up to 10 or more times a day. She is financially supported by my parents, Mum helps her clean her place, helps her shop and pays for utilities. The list goes on and on and on. Some of my parents choices to help her really annoys me and I do say I don't agree but they have parental responsibilities i do not and they are adults and have made a rational discision themselves.<br />
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My sister has been extremely violent toward me when I was younger especially when my parents had gone out. At the times when she did hurt me I obviously told my parents and they did very little other than hear me vent and cry. Though I do not know what they could have done as they have also been exposed to her violence and constant abuse. However it has affected me mentally and quite deeply. It took me a number of years to get to a point where I stopped disliking her. <br />
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My way of coping (and living away from her helps as I have my own lifve now) is I have had to pull back a bit and unfortunately I cannot involve her in many things in my life. I tell her very little about what I do (though she wouldn't be interested anyway) and I just sit and listen to her ramblings about other people and stuff she is into. She has one opinion only about the role that each family member should play and nothing else is acceptable. I am gay and my sister does not know. I hate not feeling like I can tell her. However she constantly makes fun of gays and actually condoned her friends for bashing gays. Therefore I just can't tell her as all her "friends" most who also have aspergers will find out and then bad things happen. <br />
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My parents know I am gay and are very supportive and loving toward me however growing up I knew I felt different but due to my sisters problems I felt like I couldn't share or talk to my parents as they had their hands full. Sigh. I hope there are more support lines now then when I was growing up as I know exactly what you are going through. And no I don't have any words of wisdom as I really don't know. My saving grace is though my parents spent more time looking after my sister and they still do and I did feel a bit left out and that certain behaviours where not dealt with well my parents love me very much and they show that. They supported me as much as they could considering and I do not know if I had a child with a disability if I could cope as well as they have with no support from any institution. I have a good career, I am in a long term relationship, I travel, have many hobbies and try to be an optimistic (but realistic) person. Though I have some emotional issues that I try to deal with as best I can on a daily basis. One person with aspergers in the family effects everyone. A couple of my friends also have an asperger or autistic family member and their behaviour also tends to cause mental and emotional issues for the other healthy family members.<br />
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Even now, my parents and myself catch up regularily and there is usually a period of time when we all vent to each other about my sister (may not be the best way) but at least we are all on the same page and know what each other is feeling. However we spend most of the time not talking about her. <br />
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I just accept now that my sister will only get worse as she gets older and that my parents are trying to cope with it as best they can. I help whenever things get really bad but I never feel responsible. My parents are a little wiser now and they don't do anywhere near as much as they used too. However for my rational mind it is still more than what I would do. Anyway that is my rant. I wish you all the best : )

Thats super taxing on uu...iam going through this as elder sis is an aspie.<br />
Its soo frustrating when the people around wants us to communicate with them but when we do, no one u said "words of wisdom" keep pouring in..But they themselves get irritated when our aspie sibling is around..WHERE DO THOSE WONDERFUL WORDS OF WISDOM GO THEN??<br />
our social life suffers badly, we end being isolated n INVISIBLE truly.<br />
can so understand the pain..n felt amazing when i read ur article..felt, ohh someone does understand!

It is so good to hear I'm not the only one. I find that if people can't follow their own "words of wisdom" then why should I? Maybe they should try a mile in my shoes and then they might change their mind about their "advice". I am so thankful that I am not the only one. I'm curious what you do to cope?

coping up is one tuff thing...have explained my parents about my sis,but they aint helping much, m going to get married n india we have arranged marriages, waiting for the right proposal to just leave this hell!

what abt u??? how do u cope up???

Well, I have found this site I can vent to, but now school is getting in the way of everything. My brother has been taking some classes at a school that will hopefully train him to have "life skills". The problem is that my parents feel the need to give him even more extra special attention because he told them that he feels this is a punishment. I go to school to get away from all the home drama, but at my school, I have to work extra hard and be the top of the class so I don't disappoint my parents. Then my friends give me all of their drama, but I'm not allowed to share mine. Some times it feels as if I'm carrying the weight of the world and I am about to be crushed by it all. The way I cope is reminding myself that only a couple of years left and then off to be on my own. Some times thats not enough. I also found writing fictional stories to be my passion of life so I turn to it. School gives me so much homework that sometimes this isn't even possible. I keep waiting on tomorrow to become today.

Ugh yah I hate when my friend's don't listen or understand my home-life drama. It's good to have this forum.

It really does help when you have a place to go. It's kind of just like my secret garden

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