Autism’s Invisible Victims: The Siblings

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It is a virtual epidemic. One in 88 American children is diagnosed with autism-spectrum disorder, according to the Centers for Disease Control and Prevention. Earlier this week, Representative Darrell Issa, chairman of the Committee on Oversight and Government Reform, held a hearing on how the federal government can better respond to the dramatic rise in autism rates. Yet for all this concern, one large affected group is being routinely overlooked: the siblings. Of the 839 studies reported within the past four years in the Journal of Autism and Developmental Disorders, only four were devoted to siblings, and their primary focus was on genetic risk rather than life experience.

(MORE: What to Make of the New Autism Numbers)

Over the past five years, I conducted in-depth interviews with a nonclinical population of 35 siblings of children with autism, and their pain, grit and silent endurance was akin to children who grow up with a parent or sibling with a chronic, debilitating disease. As they told their stories, often for the first time, they spoke of brothers who lurch from a gentle touch, stare fixedly at a moving fan and avert their gaze from a smiling face. They described sisters who scream when a chair is moved an inch out of place or repeatedly recite the names of flowers that begin with p.

Perhaps the most striking motif across interviews was the fierce devotion they showed to their affected brother or sister. One youngster relived a catastrophic event when her brother quietly drifted away while in her charge. The image of his wandering the streets, unable to speak his name, was forever etched in her mind, her carefree lollipop days forever gone. Gripped by the specter of losing him again, she became as vigilant as a tiger mom and created an invisible tether connecting each to the other. In another family, Marion, the older sister of a spectrum child, applied to Harvard and was promptly accepted. But she seriously considered refusing the offer because “I couldn’t abandon Elena when I was literally my sister’s keeper.”

(MORE: Autism and Air Pollution: The Link Grows Stronger)

Despite their devotion, most siblings also resented the affected child. Though they fully appreciated the burdens their parents shouldered, they lamented a family that totally revolved around one child. Major school events were often attended by only one parent, the other staying at home with their spectrum child. “Hey, what about me? I have special needs too,” one remembered protesting. Not surprisingly, many envied their friends’ “normal” sibling relationships. They longed for mutual support, shared secrets and the imaginative play enjoyed by typical sibling pairs. They fervently envied the freedom to quarrel without fear of disaster. The wish for a sibling confidante was never more ardent than during clashes between their parents.

Which is the larger point. Autism isn’t just a health crisis; it’s a family crisis that impacts all members. Sometimes the impact on siblings can be positive. Aware of their comparative good fortune, these siblings were inclined toward sacrifice and mature beyond their years. Most were prepared to assume full responsibility for adult siblings in later years, and many enter an array of helping professions. But until we recognize autism’s collateral effects and attend to the special needs of the whole family, we will not really be grappling with the far-reaching but deeply felt impact of this disorder.

MORE: Ai Jen-poo: The Invisible World of Nannies, Housekeepers and Caregivers

59 comments
Madiha321
Madiha321

I'm 16 and I have a 18 year old autistic brother. I feel like my whole life has been no point. I have always had to sacrifice everything for my brother. The only thing I remember from my childhood is taking care of him, people used to always make fun of me and say "you act like you're his mom". I had no family attention and I still don't, they say they love me but I know they will never love meas uch as the love him. My brother has abused me multiple times, but ofcourse I had to deal with it and get over it. He has a very bad temper, and everyday he fights with my parents. And I literally mean EVERYDAY, there's always screaming. He dragged all my cousins away from my life. I honestly feel that I have no one to talk to anymore. We used to go to family therapist, but one day I shared a family issue ( which YOURE supposed to do), and my mom and dad was so mad at me. One day I told the therapist that my brother hit me, and the next day someone showed up at my school to talk to me. And ofcourse I lied and took it all back. Because my parents would probably disown me if my brother was ever taken away.

EgleGelaziute-Petrauskiene
EgleGelaziute-Petrauskiene

dear Siblings, I am mum of two boys, younger of them is autistic, they are 12 and 10 now and it is still sad for me to see other brothers being able to play and talk and go places, - it is almost like autism steels your closest childhood friend - gives you alien friend instead - wich is yes- reality, but is not the same. It also means loosing much of parents attention, missing out in things. Parents just take it for granted, that you here to help, to keep an eye. Being illustrator I drew a picture/story book about it 'and my brother is called Tomas' about that loss siblings have to experience, as it is neverending, you just learn to get on with it, and on that way you learn a lot more patience, gentlenes and other things than you would with just ordinary brother. Wish for thet strong medicine too, Deondra!

DeondraWilliams
DeondraWilliams

I am 14 and I have an autistic sister. My amateur research showed that girls barely get autism , but she did. My childhood will be forever ruined and scarred. My arms, hands, neck, will never be flawless due too having to hold her down in the car when she has a meltdown. She literally gets out of her seat belt and attacks my mother, we could be riding in silence and BOOM. She aggravates me. I don't want an autistic sister, but everyone will scold me if I say so. Well sorry I don't enjoy getting headbutted and scratched. Do you? If so take my place. I will disown my family when they ask me to watch her in my adult years. Because she'll be bigger and more violent. I don't want to put up with it. I wish she didn't have it, but she does and no one told me how to act towards this. And her father (not mine, just step dad) is just .... He . ugh. But autism ruined my childhood. I'm waiting for someone to ask me am I OK. Tend to my scratches I have that bleed and burn when I take a shower. Where are the support groups for me? Ugh I hate thia. Just give me the strongest medicine for autism so I can put it in her yogurt. (She has like 50 a day.)

RiverWalker1
RiverWalker1

@DeondraWilliamsMany people forget the way having an autistic sibling affects the normal siblings; like you. Deondra, you are normal and your feelings of aggravation, and anger are normal. You didn't give birth to the problem but you do have to deal with it. Are you OK? Are you able to find some peaceful time to yourself? I don't have to know where you live but I want you to look online and find an Autism Support group you can call toll free to Autism Speaks - and find a family support group in your area or even just talk to someone who will listen and not judge you. You will be grown and out of that environment someday. Keep hanging in there is all I can say. I'm so sorry you suffer physical abuse from your sibling. I wish she didn't have it, too. I know you know it's tough on your mom. I know it's tough on you. We have a friend who has three sons. Oldest and youngest are normal. It's the middle one who is autistic; Aspergers. He has been violent and it angers me that the mom and dad continue to do their live the way they do and leave the youngest on in his care after school until they get home. The youngest boy is skin and bones and hardly eats and is so timid. The middle one has been at a special school but came back after doctors adjusted his medicine. This has ruined the youngest one's life again. I wish there were homes for autistic people to live in where they were safely monitored and given meds so they can have a good, safe life and not ruin the lives of the rest of their families. I'm honest about how much autism affects the rest of the family. Deondra, please call eight eight eight - two eight eight - four seven six two. I hope you can talk with someone. It won't get better right away but talk with someone so you can get through the tough times. Enjoy school and learn all you can to be independent and smart when you get out on your own. Be safe. Take care, dear

retroruby
retroruby

@DeondraWilliams 

 Deondra, my dear love,


How are you? I am truly so sorry to hear what you are going through. And need to tell you that I am the mother of a 8 year old little boy with severe autism. He has a 9 year old sister too and a 5 year old and a 24 year old. And I can tell you that, we too have endured those scratches that you talked about and in our case bruises too. I understand how it feels like for other people to sometimes stare at our scratches or bruises and even my girls too. It is very sad and very hard.  But understand that you need to push through these feelings and become stronger. I know you might think it's unfair, but in reality you are learning something very special. You might not see it now but you will someday. Perhaps one day you will take this experience in your life and begin a strong support group for other siblings in your situation. And because I understand your anger and how lonely you feel, don't let them get the best of you. You are only 14 and you have your whole life ahead of you. Take this experience and turn it into a positive one. As a matter of fact with your parents permission and adult guidance you can even begin a support group now. I am almost certain that there are many children your age in the same situation that you can become a hero to them. Be careful to not overwhelm yourself with research on autism, that fact is that it is hard and it is a sad situation for you and your sister and everyone in your family, from time to time. Too much research can be overwhelming to an already overwhelming situation. And know that nothing stays the same forever and that no one can predict the future, so do not worry too much about tomorrow. Enjoy the good days and stay strong on the challenging ones. Make it better sweetie by learning to stay positive and strong, and hold on to love. Love is a powerful energy, strong enough to guide you and help you and your sister. Consider yourself an angel sent from heaven to make things better. You can handle this, just look at your letter, not many 14 year old's come out and write something as strong as you did, that's takes a lot of courage.  Stay strong and God bless you and your sister and your family a million. 


Love, Sonia

JonFlom
JonFlom

I'm 11 and have two little austic brothers and one is 10 and the other one is 8. The 8 year bite, pinchs, and headbutts also. Me and my dad are taking care of them all the time and we have a lot scars and bites. I'm the only non-autistic child in my family. Sometimes I have to hold my littless brother in his seat. They ruin my childhood also. They sometimes sweet. I have take care of medicine and the littess have 15 pills and the other one takes 10. I agree that were is our support groups.

mscott2190
mscott2190

iam 23 years old and a couple days ago I found out that I have Asperger's syndrome which is known as autism spectrum disorder now and it explains my child hood and everything ive gone through and why I still face challenges and idk im lost with thought about it now a biggest problem im trying to come to terms with Is I don't feel normal and don't know if I will ever get to feel like a normal person and one thing I am grateful for is now my wife is aware and knows why im the way I am and hopefully it helps her understand me

MelissaT
MelissaT

To Barbara Cain, thank you for stating that it is a family in crisis not just one member of that family. That is so very true. To all of you who have siblings with autism: Please remember that no one chooses to be the way they are. I used to resent my sibling with autism and it caused me times of feeling alone where I sought attention in the wrong places, etc... However, I have used what I saw with my family as a way, or as motivation, to want to educate others on better ways to cope, to research the cause, to find a way to help my sibling find friends, etc... It has made me a much better person then I would've been if I hadn't grown up in that situation. Don't resent your parents and don't resent your sibling! Everyone's way of coping is different and if you feel left out, speak up! Try to find ways to bond rather than hide from the problem. I did and my sibling is now one of my very best friends! 

2lazy4u122502
2lazy4u122502

If anyone has any advice for a 12 year-old girl about dealing with a 15 year old autistic sister, please respond.

alexandrialauren
alexandrialauren

@2lazy4u122502 I am 20 years old with a 23 year old autistic sister and her name is also Victoria. The hardest part for me is to accept my sister for who she is and accept that she will not change. When I was 12 and through high school I remember fighting with her and my mom would always side with her. That will not change. Your sister will probably have few friends and that's scary to think about. My advice is when you get mad at your sister or mom, just walk away and take a breather. This might sound like stupid advice, but it's good to walk away before you say something you will regret. For years I called my sister retard relentlessly and I feel absolutely terrible for it now. On the other hand she curses me out all the time. In regards to hanging out and doing things, every interaction will be on her terms or end in a screaming match. You will never convince your sister to try makeup or even wear something other than a ponytail. However you can try to take interest in what she finds interesting. That sucks but that's as good as it's going to get because you can't make her do anything. 


Moreover on friendship, if you have friends over be honest with your house rules. My sister hated when anyone sang and the radio. I told my friends no singing. I can't remember having more than one or two friends over throughout high school. My household never really entertained people other than family. The sleepover rule might not change but you can ask your parents if you could visit other friends. Additionally I feel guilty for having friends when my sister does not. I wish I included my sister more instead of being embarrassed of her. Encourage your sister (she might, she might not do it) to join clubs in high school. When my sister lived at college she joined Catholic club because they had free food, but she stayed because the members were really nice. There are nice people out there who will be nice to your sister. 


There are a million more things to say, this comment will not fit them all. My comment is pessimistic and I say these things because in my experience they were true. I wish I could have learned to cope with my sister's autism sooner instead of resenting her for it. Bottom line: be nice to your sister because you're probably one of the only friends she has. Autism is very, very lonely. 


NOTE: These are my real life experiences and I only wish to help neurotypical people with autistic siblings. I wish I turned to the internet sooner for support. 

RiverWalker1
RiverWalker1

@2lazy4u122502 I'm so sorry you have to deal with an older autistic sister. No matter what happens, she is the problem and not you. Make some alone time for yourself and understand that there is help even if it's on the phone from someone at Autism Speaks. You can call them, toll free, no cost long distance and maybe they can find a support group that you can go to with your mom or through your school. The number is eight eight eight - two eight eight - four seven six two. Since you're online here you can also look up their website. I'll keep you in my prayers and do your best in school and learn all you can so when you are old enough to go out on your own you can make a good life for yourself. Remember, your sister didn't ask to be born that way and your mom and dad didn't want her to either. I know you wish she was normal. But she won't ever be and even with medication it sometimes doesn't work for them and it has to be changed a lot to keep working. Find a safe place you can be...in your room or if you share a room in another room in the house and try to get some time every day to be at peace. I know it's hard. I grew up with a mom who was schizophrenic (she was paranoid, saw things and people who weren't there and didn't think my sisters, brother and I were her real kids) but we managed and got out on our own and are living good lives. She's still the same and my older sister is taking care of her now that she is in her 80's. I took care of her for 10 years sometimes at my home and sometimes at her apartment. My mom didn't have Autism but the problems she had threatened my life, embarrassed me in front of friends (my real friends understood and felt sorry and were still my friends) and chased away any boyfriends that were interested in me. I guess they weren't really that interested in me. I met my husband and he knew all about my mom. He can handle her and is sorry about what I put up with growing up. It does get better the more mature you get and the more you know about what you're dealing with with your sister. Just keep yourself safe and if there is ever any violence or you are physically threatened call 911 and protect yourself. Because you are worth it! take care dear and be safe.

2lazy4u122502
2lazy4u122502

Thank you so much Barbara Cain. This is exactly what I feel like. A victim. i'm 12 years old with a 15-year old autistic sister. Every time I call her a  name or do something to annoy her, I have to go to the therapist and talk it out. But when my sister makes snide remarks under her breath,. my parents just say "Now (my sister's name), that's not very nice." I'm so tired of feeling like I don't matter. I make straight-A's, so making an A on a report got me a good job. Victoria also made straight As. When I got a B on my report card, my mom was ballistic. But my sister's first C was celebrated with ice cream. And no matter how hard I try, she'll never do anything with me. She's very closed off, which I can understand, but the only friends I have are at school, which means weekend after weekend, I'm stuck walking the dog and scooping poop and watching shows that I don't even understand. I want to do something better, but it's so hard for me. My parents refuse for me to have a sleepover with kindergarten friends, but my sister could sleep away 3 nights at a lodge in the park for her 11 birthday. Sometimes, I hate her, because when I need a sisterly figure, she isn't the best. Right now, i'm going to go check your book out of the library and read it. It'll give me something to do on those lonely weekends. Also, to LightnDark, the same thing has happened to me. My best friend was having a party at her house, sort of like a pow-wow, and both my parents had to work, so my sister had to come. When my friend tried to look at what she was drawing, she slapped her. I haven't been invited to many parties after that.

NtheChemist
NtheChemist

@2lazy4u122502 Hi. I understand exactly how you feel. I am a 24 year old with a 28 year old autistic brother. We did not know that he was autistic until he dropped out of college in spectacular fashion. You are right, your family's life revolves around your sister and it is utterly and completely unfair. Your parents are treating you two unequally, but it is not because they love you two unequally. It is because having an autistic child often forces parents between two awful choices and the best that they can do is pick the least awful choice. The way I survived was by finding a space that was my own. I found activities that my brother was not a part of, friends who had never met him. Leaving home for college was amazing because I had a whole set of people who had never heard of my brother. I promise promise promise you that it does get better. You will develop your own life. You will find people who love you. Your grades make it sound like you will have a bright future ahead of you. It absolutely sucks right now, but it will get better.

LightnDark
LightnDark

Like many of the posters below, I have an autistic sibling.  I feel that the word "victim" is a bit strong.  However, having an autistic sibling does have a profound impact on my life, and overall this impact has not been positive.  As the sibling of an autistic child, I am constantly expected to be sacrifice my needs and wants in order to please my brother and keep the peace.  


Because of my brother, I have been disinvited some years from Thanksgiving and Christmas at my parents' house.  I have been cancelled on for my birthday dinners.  I have not eaten at a restaurant with both my parents in 10 years.  I cannot attend a concert or movie with my parents.  I cannot take a vacation with my parents.  I am extremely anxious that both of my parents may not be able to attend my wedding next year.


These are all losses that I have endured because my brother has autism.  Understandably, these losses are a result of the fact that my brother has autism AND my parents have made made certain choices as a result of his autism that negatively affect me.  To be clear, I do not blame or resent my brother because he has autism.  I also try to remain objective and understanding when judging my parents' actions.  I do not have a child with autism, and I cannot predict how I would react and what decisions I would make if I did have a child with autism.  Do I think my parents have handled my brother's autism well?  No.  Do I think I could do any better?  I have no idea.


My purpose in posting this comment is not to vent or rant about my experiences.  I understand from talking to other siblings of children with autism that my experiences are not unique.  Rather, it is to make people aware of the fact that siblings of children with autism do suffer.  Are we victims?  No.  But, our sacrifices go largely unrecognized and unappreciated.  For the parents of autistic children who are reading this, please remember how your decisions affect your other children.  Please don't forget about us.

2lazy4u122502
2lazy4u122502

@LightnDark I loved your last paragraph. My post was more of a rant, but seriously, parents? We are not invisible, or any different than your utistic child. We still laugh and cry and make mistakes. Please, notice them.

noBodyImportant
noBodyImportant

I am very glad to see this internet piece that finally acknowledges the seriousness of the issue. Yes, I grew up with an Autistic sibling. A severely effected one too..back in the 70's and 80's when it was even less well understood. The condition was strong enough that when I see a person with Ausbergers today, it's very hard for me to even think of him or her as Autistic. Yes, I know they are, but it's on the other extreme of the spectrum that I know. It seems much of the recent epidemic falls on that side  too. I would guess while still painful, it has more opportunities for manageability? My sibling couldn't even communicate, after all. When I think of my child hood, it was one filled with intense shame, guilt, isolation, emotional avoidance, sacrifice, that overall sense of doom / inevitability as the sibling never got better. There was learning that others's needs are more important than my own, and the teasing pain / intense sadness of a sibling relationship never to be fulfilled in the slightest. There was even a touch of alcoholism involved in the family due to the stress of an untenable situation (or perhaps from the medical establishment that constantly blamed my parents. Remember the term Refrigerator Mother?). Every body's experience is going to be different. I even read an article or two about how having an Autistic sibling has made them better more responsible people. That just wasn't my experience.  Years later I found myself reading literature and attending some ACOA and CODA meetings. Gosh could relate more to those insights - although in my self examination it was clear that I picked up many self defeating traits, more from the extended trauma of Autism then from the alcoholism.

retroruby
retroruby

Dear "TIME" the statistics your posting 1 out of 88 according to the CDC was in 2008. We are now at according to the CDC 1 out of 50 for 2012.

ChristineK
ChristineK

I'm a fourth year student in IT Sligo, Ireland and as part of my group dissertation we have chosen to focus on the topic of the use of PECS between a child on the autistic  spectrum and their sibling by creating a story book called 'In the day of the life of a sibling of a child with autism'. We are required to complete market research and I was wondering would anyone mind completing this online survey that will take less then 5minutes.

<a href="http://www.surveymonkey.com/s/YTXKFRZ">Click here to take survey</a>

Thank You
Christine Kelly
(for any other questions/information please contact me on christin_k_lly@yahooo.co.uk)

KrajlKokaina
KrajlKokaina

Actually, my life has been relatively good. All the issues I have don't have any connection to my brother having autism (or whatever he has.. yeah we don't actually know :/) My parents and my brother would always make an effort to come to my important events. I have a very close relationship with my brother. We're best friends, even though the only thing he ever really says to me is "meow." He's a really funny, mischievous and sweet kid, and I'm honoured to have him as my brother and wouldn't want it any other way. Sure he has temper tantrums, and occasionally drives us all to the edge of insanity but c'est la vie. I absolutely adore my brother and am very protective of him. The only times I resented him was when he puked on my bed like 15 years ago and when we had to leave a mall early while on vacation because he was having one of his temper tantrums. (Yeah obviously there are many other times but those are the ones that really stand out.) 

PaulPruett
PaulPruett

I wish my brother was like his, mine was regarded as the special one and was held up to me to be a bright example, the "little grown up" while I was treated as a bother some freak. I could never understand why he didn't love me..and treated me like furniture..Now I know he had Asperger's and his love of numbers, extreme frugality and obsessions with his hobbies and habits were all part of a disorder not something to be praised and held over my head by cruel parents.

SarahKnight
SarahKnight

"not a victim" hmmm  I can agree with feeling the victim words is too strong but still....

I am a YOUNGER sister to a 21 year old autistic boy. I'm 19. We live in a small town with less then 800 kids total in the whole school district. In the 90s we didn't have therapy or special people to follow my brother where-ever he was in the school.  Elementary school was HELL. Every time my brother blew up over homework or the class being too loud, I could hear it in my class down the hall.  At least 6 times a day I'd hear 

"you're Bryan's sister right?"

"yes"

"You know he threw a desk at the teacher?"

"yes, I'll talk to him."

I didn't need that in third grade. It was all I could do to get my homework done at home. Who can concentrate with a screaming person throwing things in his room for 2 hours straight?

Luckily the teachers and the school in general finally got the message and put him in a special education classroom with all the others who couldn't learn the 'normal' way.  But still teachers would tell me to help him with his homework because I was the 'smart, bright one'  Had they seen all my Fs in math? 

I don't know how, or why, or when, but at one point somewhere around sixth grade his classmates wouldn't come and get me to calm him down. They wouldn't tell me what he did "odd" that day. It was quite nice. I made friends that year. (not the greatest friends, but still) 

It was when I went to the junior high with him that I really saw a difference. His classmates would only come and find me if he thought he forgot something, or if he was going home early. (They totally forgot to tell me when he passed out in class though.) I don't want to make it sound like he had a disease, but he got BETTER in high school.  He talked more to people, he participated in class. No blow ups at pep rallies, (mostly).With a whole bunch of people surrounding him all day, knowing his ticks and triggers,  he graduated from high school. On time. In the ceremony. When he walked down that paper walkway waving and punching the air, and wearing those Mickey Mouse ears, I swear the whole place cried. The whole town knew who Bryan was, what he was, and their only goal, to give him a proper education and rearing, was fulfilled.  In place of a screaming boy who threw desks at teachers; there was a man-boy, who loved star wars, Jim Henson, and movies.  

His classmates could've ignored him, they could've of bullied him, but they didn't and treated him better then their own siblings.  If they didn't I think I could've easily have hated my brother, run away from home, and done some really bad things. Because I had to take care of him, not myself.

People need to realize that these siblings ARE NOT their autistic brother/sister.  They are their own people, with their own quirks, needs, and feelings.  A lot of people seem to think "they are YOURS so DEAL WITH IT". But they aren't. They are everybody's. Especially in close knit communities. Everyone needs to know the triggers, everyone needs to know their hobbies and dislikes. So if something bad happens (OMG HE broke a mirror) THEY know how to deal with him/her. (Its okay, I know it was an accident, how about I make you hot cocoa and call your mom okay?)  So WE (the relatives), get the whole story and not freak out. (He didn't see the cord on the floor and tripped.) 

These people are going to be out in society WITH OUT their siblings, parents, etc, eventually. WE who live with them 24/7 shouldn't have to stress over a simple trip to the store, or going to a movie. 

Because my town realized I was my own person, they look out for him, they tell me and my parents if they saw him looking sad or angry, they get them out of bad situations and away from construction zones. 

treesap17
treesap17

So, like any other health issue, Autism is a family issue. Are people with cancer the victimizer too? People with lupus? Someone who had a stroke? A heart attack? Things happen in life. Health issues will always inevitably affect those around you. 

Autistic people are not the victimizers. You're the victimizer. 

karlatrx
karlatrx

Do I like the use of the word victim?  No.

Does everyone have the same experience and feelings? Of course not.

But it IS difficult to be the sibling of a child with Autism.  I don't see why anyone would want to deny that or not validate their feelings.  

My autistic son is a wonderful funny terrific person. His sisters are wonderful people too.  I see many of the problems and benefits that the article mentions in the relationship they have.  My oldest daughter is in nursing school and is compassionate and has a big soft spot for kids on the Autism spectrum.  But she's also had resentment towards her brother and parents.  And that is valid and normal.  

Jenner
Jenner

Contrary to what people seem to want us to believe, this is not a new problem. Not all autistic people are children--my brother is 43. Do you think growing up in the 70s and 80s with an autistic brother was fun or easy? I always the girl with the crazy brother. Looking back, what is even worse than the way people treated me, was the way they treated my parents--I interacted with children, who probably didn't know any better, but my parents' peers were adults, and they have no excuse.  Our neighbors (except for 2 wonderful families) wouldn't play with me or speak to my parents. Organizations like Autism Speaks say "it's time listen"--well, let me tell you something--that's not true, it is long past time.

rennwah
rennwah

Barbara, what do you say for the sibling that has a back ache all the time from carrying their physically disabled sisters books in school? It's called love. it's what we do. There is no such thing as a fairy tale family. There are no victims and Autistics are not assailants. 

The real question is why isn't there enough community knowledge and support for Autistics? The communities should share in this responsibility. Sadly, parents of Autistic children are sick and tired of having to explain their child's behaviors to typical parents, so they don't bring the Autistic children to the siblings school plays and to the supermarket and to the park. It's the saddest thing in my life as a proud parent of a superb Autistic girl, to have to search for other Autistics. Society doesn't like us cause they don't understand us, so what do we do, we go to the park when its raining or dark, we shop early in the morning or late at night. Thank God for their siblings because its the only way most Autistic children get any social time at all. Siblings are not victims, they are heroes and teachers. What an honor to have... to grow up with a profound sense of love, compassion and empathy. 

What you have done with this article is to set us back and push us further into the shadows. Well I got news for you, There's power in numbers and ours are growing. We are the new norm. I say WE cause I will never let my child go at this alone. We own this, as a family, including her amazing 4 year old brother. 

RichWeinfeld
RichWeinfeld

This is a very important and often overlooked topic. My group, Weinfeld Education Group, is hosting a conference on March 3, 2013, in Rockville, MD, focusing on "Family Quality of Life." Our keynote speaker will be Eustacia Cutler, mother of Temple Grandin.Rich Weinfeld, 

MaryETormey
MaryETormey

My brother David was the centralized focus of blame, when I was a child, but now that he is dead. I can see clearly through all the crap I was not "imitating David". I was exposed to the same crap he was exposed to. It was not David's fault he messed with my stuff and infringed on my right to have personal belongings, my parents could have put a lock on my door. It was not Davids fault I got bullied, I was picked on and singled out because I developed later then my peers and our society is cruel to people who can't keep up with the crowd. It was not David's fault we had industrial grade fluoride in our drinking water that put me in a continual state of hunger, incontinence, and pain. It was not Davids fault they drugged him till he started having seizures and drowned. I witnessed many crimes committed by the drug and the chemical industry. I am a survivor not a victim. Do I suffer? Yes, I suffer unimaginable pain everyday since I was forced against my will to take Risperdal. I suffered and complained for over a month will the swelling from Risperdal crushed my insides so much I could barley even squeeze out liquid poop. I was the sibling of an Autistic child and I didn't even know what suffering was. I used to think it hurt when hot wax dripped on my hand, now it just makes me giggle. Risperdal made me feel pain like I will never feel pain the same way again. My  thyroid still presses against my neck changing my  vestibular perception and making me feel like I am upside down. "You can always stop taking it" they say will they forced me to take it till my body and my life where destroyed. I don't blame Autism, I blame J&J, Monsanto and any other company that forces poison on innocent people. 

ZoldyKate
ZoldyKate

Siblings of children with undiagnosed autism suffer greatly also. Parents who either deny their child has symptoms of autism, ADHD etc or who may be just oblivious to the unusual behaviour are doing their children a colossal disservice. The longer such conditions are left unnoticed, ignored, denied etc., the worse the childs symptoms may become, the more they will struggle to cope with adult-world pressures as they grow up and, equally as importantly, the more their younger siblings may begin to imitate and perform their behaviour. I am witnessing these effects first hand, but am in no position to act upon my fears and concerns as I am notblood-related to the family and my word would not be accepted. It is very frustrating, worrying and often quite upsetting.

amyc
amyc

From Easter Seals. A study. Facts. How is life different for adults who have siblings with developmental disabilities, many who have assumed – or will assume – primary caregiving responsibilities for their brother or sister with disabilities?Easter Seals Siblings Study sheds light on the experiences of sibling caregivers as well as insight on the services and supports they need:80% of survey respondents say they have a close relationship with their sibling with a disability and that this relationship enhances their life;http://www.easterseals.com/site/PageServer?pagename=ntl_siblings_study_home

TrishThrush
TrishThrush

Calling Autism a "family crisis" and using the words" epidemic" may increase the sensationalism of this article but for the actual self advocates or family members who know the truth this article appears like a very thinly veiled attempt to sell magazines. My daugher has ASD. She is natuarally who she is and she is wonderful. Her brother is devoted to her as any brother would be and fights with her like children do. They are siblings. Neither of them is a victim. Please stop trying to sell mindless articles that are dressed up in sensationalism. Please consider how your words will affect those who met someone with Autism in the future and help all of us work towards acceptance. Having a child with a diagnosis does not change that they are a child whom you love and accept as do thier siblings. All that changes is how they are precived in society.. Consider your impact on my child before you speak. 

ziggyted
ziggyted

This is a great article, but I wish there wasn't to many typos. "One in 88 American children ARE (not is) diagnosed..." "The image of HIM (not his) wandering the streets..." Really interesting points made, but such an article deserves to be reread before uploaded - the typo in the opening almost made me stop reading. Great content shouldn't be overshadowed by poor grammar.

amyc
amyc

This might be the most irresponsible drivel I've read about Autism, to date. Ridiculous.

RachelCohen-Rottenberg
RachelCohen-Rottenberg

Excuse me, but how does not having a "normal" sibling make one a "victim"? And I've got news for you -- some people feel neither "devotion" nor "resentment" toward their autistic siblings. They just treat them like actual people. You know, the way siblings do.

MiaGioia
MiaGioia

Funny, I was an ASD kid who was left to my own devices, while my weakling brother got all the attention. Because I was the kid who could figure out the math problems or find the patterns, I was considered "smart", I was quiet and didn't cause trouble, so I was "good."

Maybe the pendulum has swung the opposite direction, because so many of us were so ignored, or shuffled away and not dealt with for so long.

MiaGioia
MiaGioia

The number of people with autism spectrum disorders is THE SAME as ever. It's just that the spectrum has been fleshed out thanks to the DSM IV, and now people who weren't considered autistic, or were mis-labeled as "true" autistic--were on a spectrum.In the 60s, I was almost diagnosed as autistic, but I was too outgoing, too engaged, and so on with the world than the classic autistic. Now they call me Asperger's.It wasn't so long ago that many thought that people who heard voices were possessed by demons. Now we call the ones who hear voices schizophrenic.Same thing. Different condition.

McKenzie
McKenzie

20 years ago my brother was diagnosed with Aspergers Syndrome (at the age of 18). Almost no one knew what it was at that time which is why it took so long to finally figure out what was wrong.  Ten years after that, I was diagnosed with my own mild (non-PDD) disorder. My brother's issues were so much more intense and disruptive than mine that no one realized I had a problem as well. Both of us could have benefited greatly from earlier intervention.  I know that back than there were groups like NAMI setting up sibling support groups so this issue is not a new one.  Still, with what appears to be a considerable increase in autism spectrum diagnoses, it's an issue worth emphasizing to parents and care givers. 

I still remember the frustration I felt when I was younger to to the lack of attention from my parents. Like another poster mentioned below, I often defended my brother in school as well even though he and I did not always get along. I hope parents will look for support resources for everyone in the family--everyone needs it, not just the special needs child.

alainrj
alainrj

All children can really benefit from the progression of technology especially children with autism.  Tablets provide a great shared experience, between both Autistic children and their siblings.  http://goo.gl/8HFMm

jbudka
jbudka

I have often felt guilty when my daughter, two years younger than my Asperger's son, would sit silently in the midst of a family crisis. Taking things in. I made special times when it would just be the two of us that would go shopping. We would go to the American Girl store, get our nails done, mini field trips, etc. What I did not know, was how much she would have to stand up for her brother every day at school, while kids would make fun of him, call him names and bully him. All of the while she had his back and would let no one push him around. They were one year apart. During his senior year of hs, she had three classes with him. She said her whole junior year had been ruined as a result of this. All I could do was tell her how proud I was of her for being so tolerant. She would go off and tell me that I treated him better than her and I loved him more, but I kept praising her because I could not of done it without her. She definitely was and still is affected by her special needs brother. Even though he is 21 and she 19. I can only say that she is one of the most beautiful, caring and lovintg young ladies as a result of this. I respect her and I know her brother does too, even tho he doesn't always find the right words.

greenseranade
greenseranade

the most forgotten include the mild autistic who better blends in but can rarely forge a bond with either sibling or classmates.  the siblings of these individuals can be terrorized by an always angry mild autistic sibling.  you cant reason with them because they lack sympathy  you have to bribe your way to peace every single second of the day.  a trip to the store ?  whats it like to come home to broken doors and windows and a daughter who is being physically threatened   i yearned for the moments when his computer could take over his mind and we could clean up his messes and try just to breathe something untainted by such indifference.  i love my son but he cannot love and that does something to us all  . i pray for the day that he finally sees himself and not the imagined long suffering hero that he thinks he is  but it will never come. and its so sad because he is surrounded by those who love him and do anything for him that brings him temporary peace     he watches whiles others enjoy and laugh and hug while he sits with his frozen scowl and thinks to himself that they are all fakes.. that happiness is fake. that love is fake. and only pain and disloyalty are real. his girlfriend broke up with him because he cannot love.  and he blames me. he blames his uncle.. his father  his sisters.. everyone. he can think of and he demands that we accept the blame.  and this will never change.  this is his constant.  he is the man behind you in the store who makes you feel stupid because he doesnt approve of the way you count change..he is the driver who blasts his horn because he wants you to hurry up because thats what he wants from you from everyone. he is the person who doesnt say thankyou when you hold the door for them. and the person who tells you that if you are not like him you are a loser. try being that persons sister. merry christmas. you mean nothing to me.  / 

JPKski
JPKski

Maureen Chesus started a blog called Supersiblings to help support sibilings of people with autism. The website is supersib.com and her twitter account is @maureensupersib . A small support community is growing there and on twitter for people sibilings who need support or who need to vent.

MagwireJewery
MagwireJewery

I was also affect on siblings is a topic that needs to be addressed and was disappointed that it was not. My older teenr has autism and has been very jealous and downright mean to her younger sister. I have tried to help, but the mental wounds to my younger daughter run deep. She tried finding other siblings like herself, with a brother or sister with Autism and was very disappointed to find that there were alot of websites of siblings venting, but nothing positive or helpful for her to find a way to get along better with her sister or anything positive to say about having an autistic sibling and such. 

AutismDadinFlorida
AutismDadinFlorida

I watched the hearing last night on C-Span. Yes, I agree that the affect on siblings is a topic that needs to be addressed and was disappointed that it was not.

It was good to see the topic of attending to the needs of adults with autism was addressed. This has also been woefully overlooked. 

What was most unfortunate about the hearing was that too much of the discussion was wasted on the topic of vaccines. As the father of an autistic child, I studied this issue years ago. This matter, for all intents and purposes, has been decided. In spite of a growing body of evidence to the contrary, however, there are still those who want to keep beating this broken drum. Unfortunately, this hearing was attended, largely in part, by politicians who wanted to grandstand and anti-vaxers who will never be convinced, regardless of the facts and evidence, that autism is not caused by vaccines. This is so frustrating to those of us who are trying to get the services and therapies our children need, or who are trying to get help for autistic adults so that they can live productive and prosperous lives. 

It is time for us to contact our elected officials and reiterate what the real needs and priorities are. If you are as fed-up as I am with politicians who do little more than posture and provide the obligatory lip-service which, for now, has served them well, then it is time to let them know we need help with the siblings of our autistic children. We need help getting insurance to cover therapies. We need programs to assist adults with autism so that they can live up to their potentials. 

ScethStXellus
ScethStXellus

It might be worthwhile to investigate abuse of autistic children at the hands of their siblings and parents. Your method lends itself to letting them lionize themselves.

eksnewyork
eksnewyork

What a thoughtful and wise piece that gets at a story that clearly isn't being told. This is the kind of research that represents the voices of people that are often neglected. I'm looking forward to reading the book.