For a painfully honest take on how a special needs child affects other members of the family, listen to this excellent report from National Public Radio, Coping With an Autistic Brother: A Teenager’s Take.
The piece focuses on 15-year-old Marissa Skillings, whose 11-year-old brother Andrew has Asperger’s syndrome, a form of autism. Marissa talks about the challenges of living with a brother on the autism spectrum.
He talks nonstop; talking and talking and talking. He’ll tell anybody information about any animal whether they want to hear it or not. People can tell Andrew has a disability….When he gets nervous he moves his hands back and forth.
Having a brother with autism takes a toll on Marissa’s relationship with her parents. Her brother often interrupts and makes it difficult for her to receive attention. Sometimes she stays out as late as her curfew allows so she can avoid time at home.
I come home and deal with it when I have to, and when I don’t have to deal with it, I make sure I don’t.
She and her brother tell the story of the time a neighborhood boy picked on Andrew. She chased the bully down the street, cornered the boy and slapped him.
I don’t hate my brother. I’d kill for him. But I could kill him too.
Click here to listen to the full NPR story and to see a slide show of Andrew and Marissa.
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As someone with an autistic brother, I also thought the NPR piece was excellent. The quote, “I don’t hate my brother. I’d kill for him. But I could kill him too,” succinctly sums up a lot of conflicting emotions that I’m guessing many siblings of autistic people live with every day.
If anyone is interested, I’ve written about my own experiences with my brother in a book. Though autism is not the main focus of the story, and the book is a memoir, it was really impossible to write without paying some attention to the impact autism has had on my family’s life, from virtually the earliest days I can remember. I’ve also written a short piece on autism here.
— Aaron GreenspanI heard this on the radio yesterday. I sat down to listen to it, so I could give the story my full attention.
On the lighter side of things, I learned a lot by reading Look Me in the Eye: My Life with Asperger’s, by John Elder Robison. He’s on the high-functioning end of the autism spectrum, but it still very much affects the people who love him.
FROM TPP — I blogged about Look Me In the Eye earlier this year. Great book.
— HeronA great piece. I appreciate the need for a tight focus: I did find myself wishing they’d checked in with my nephew Nicholas (http://www.autismbutton.com). Dealing with similar challenges with his little brother, Nick also decided quite early to *also* take on the cause of autism awareness as part of dealing with the hard stuff. (He might count Melissa as lucky, since his brother has still only a handful of words at all at age ten.) His website’s named for a button he created for kids to wear: it says “I’m not misbehaving - I have autism! Please be understanding.”
More of us need to participate in making the lives of these kids easier, by ensuring that they and their parents have the resources, respite and respect they deserve.
— Chris L.Have to say, although I sometimes resented being expected to be my Aspberger’s brother’s “social director” when we were kids, at the end of the day growing up with him benefited me. We didn’t even know exactly what caused his quirks until he was already an adult. However, observing his struggles to interface with the outside world and the vicious way he was treated by peers taught me a lot about tolerance and compassion.
— Gwen, NYCWhere were the autistic children when we were growing up 55 years ago? I don’t remember anyone in my school or activities who would fit anywhere on the scale of having autism. I grew up in Essex Fells, NJ which was and still is a wealthy sanctuary. I know that autism does not pick and choose, unlike some other disorders. As an RN I am always intrigued by the increase of new diagnoses. As far as I know thimerisol has been shown not to be a problem. How and when did all this happen?
— NurseTerryI admit I have not done any research on the topic..
http://www.caringisnotenough.net
There really does need to be more support for people with Autistic/aspergers siblings. All I’ve ever found (and I’ve searched) is for parents and the “aspies” themselves. My brothers and I are middle-aged adults now. The oldest brother still lives at home, alone now for a couple of years and finally learning adult things like how to pay bills and that a house has property taxes and insurance to be paid. God help him when terms need to be negotiated.
The other brother has something that could be aspergers. He’s higher functioning, has better social skills and a talent that makes him popular. Some in the know say it still sounds like aspergers. Aspergers is a diagnoses in its infancy.
My brothers were born in the 50’s and 60’s, which was the dark ages for children with learning and cognitive disabilities. It was either mentally retarded or just a kid needing discipline. My brother was put on ritalin for a while. He says he was so angry about being drugged that he deliberatly threw even worse tantrums, especially aimed at Mom. My well educated parents had behavior and cognitive issues of their own.
My brothers were spoiled, allowed to bully me, push me around, get whatever they wanted and developed over-blown senses of entitlement. I know what the girl in this story means when she says she stays away from home as much as possible, stays out right up until cerfew. By the time I was a teenager a relative gave the keys to her house, which I used many weekends untl she let another troubled cousin live in it. I spent almost every weekend in high school at a friend’s house until I ditched home completly. The girl in this story may find that by high school she’ll have to find herself another place to live. The stress can get to be too much.
Don’t get me started about my parents’ estate planning. The spirt was that we would each get an equal share. The reality was that the oldest hogged it all for himself (the house) and the other one supported that and has been helping himself and getting away with it with the aid of the trustee. Owning property with them is a serious liability. But trying to get them to buy me out is also nearly impossible. Let’s see….. I have to deal with irrational behavior, men who can’t get a loan, who are irrational, narcissistic, just lack the empathy gene. I’ve got a brother who has never lived away from his childhood home and couldn’t find another place to live even if he agreed to do so. Pay rent for my share. He assaulted me when I brought it up once. Move out? He talks about killing people. Oh, and he’s a social worker for the city.
People admire him for his achievement despite his handicaps. What about the clients? This is what poor people get for a social worker.
I’m pleased to see that times have changed, but it’s still a trauma for the siblings. When I was growing up boys got whatever they wanted and girls were expected to settle for the crumbs. With brothers like mine it’s not a fair fight, it’s an elevated trauma. My parents had seriously unrealistic expectations about having children. The reality drove them to an early grave and dragged an educated, accomplished middle class family into the slums in just one generation. I’ve read many topics on this blog about parenting and wanting children. I see from posts that there are still people with seriously unrealistic expectations about the responsibilities of raising children.
I hope more people post comments. I’d like to read about the experiences of other siblings.
— LilyHi I’mNicholas,
I know Marissa how tough life could be with a sibling with autism. Joey is 11 and non-verbal. You thinking talking too much is tough…you have to try and deal w/a brother who can’t tell you what’s wrong. I hate autism and would like to kill it…but not my brother. He’s just trying to deal with his brain being wired wierd. Sibling Support called Sibconnection –really helped me and gave me a place where I’m understood and get to vent. I don’t like to talk about Joey to kids at school, they don’t really get it. And his buttons helps others be more understanding which makes it less embarrassing for me and more importantly for Joey.
Good luck…hang in there and I hope 2009 is a great year for us siblings! And our special Siblings too!
Nick Lombardi
— NIcholas Lombardihttp://www.autismbutton.com
NurseTerry, autistic children didn’t go to school with you 55 years ago. That’s why you didn’t see them. They were probably diagnosed as retarded, sent to special schools, or institiutionalized. When my brother was little the doctors were telling my parents he was retarded. A catch-all back then for children who were different.
— LilyOk, here we go again. Nurse Terry, autism didn’t exist until 1940! That’s when it was first described, its traits were never described in history before this - unlike most debilitating diseases with specific characteristics. The only explanation therefore is that autism is man-made. Physicians know nothing about the immune system, yet we swear by scientists’ (PhD’s) work with vaccines - these guys know nothing about the human body! How naive of us physicians to assume that injecting bacterial and viral particles (as well as many unnatural immune stimulants designed to anger and activate the immune system) would result in the same immunity that occurs in nature! Instead this causes an abnormal immune response that results in neurologic dysfunction (autism, AHDH, speech delay, you name it). Due to road blocks (pharmaceutical money, literally billions/year) and red tape (due to pharmaceutical money) the dangers of vaccines are being spread by word of mouth instead of by medicine and the media. This is why the damage we’ve caused to the next generation will go down in history as the worst mistake modern medicine has made. The tragedy being that all these lives ruined (mothers, fathers, siblings, marriages, etc…) were supposed to be lived out normally.
— JoeLily is right…many of these children were institutionalized and drugged. I once visited such an institution as a young girl (part of a church group singing Christmas carols). This was the mid-70s and it was quite shocking to see all sorts of children I’d never before encountered in daily life, including one in a straight jacket. Until then, I had no idea that places like this existed, and it was just a mile from my elementary school in the country.
— KateNurseTerry–I’ll bet you did know autistic children; they just weren’t called that. The ones that could cope well enough with normal life to go to school weren’t diagnosed, they were just “odd.” (This is still the fate of many autistic girls, who can display much subtler symptoms than boys.)
— Emily B.I too have a brother who is Autisic and non-verbal. He’s 22, and I’m 28. I’m not trying to say that Marissa’s story is less important than mine, but it seem that stories in the media about Autisim tend to steer towards those who are higher-functioning.
My brother will probably never be able to live unassisted, and I don’t know what I’ll do when my parents pass away someday. It’s something that my older brother and I should talk about soon.
Marissa’s story echoes a lot of our stories out there. It was tough growing up with my brother. He was wild and destructive and difficult to be around. I protected him fiercely. Then I moved out and started a life of my own, got married had children. I don’t see him a lot these days between work and raising my own son. I feel guilty about it at times, but it hurts me to see him the way he is now, subdued on a cocktail of drugs his doctors have prescribed him.
— ScottI applaud Marissa and Aaron for telling their stories about growing up with an autistic sibling.
My brother is severely handicapped with autism.
We’re all middle aged now, and I still find it very difficult to talk about my childhood. I’ve learned to summarize it quickly: he could be violent, he behaved in sexually inappropriate ways, and there were serious issues with hygiene in our house. (He was not fully potty trained but didn’t wear diapers because my mom thought they were humiliating him.) My mom put us all on severe food restrictions because she was convinced his violent outbursts were the result of food allergies. Whenever my brother had a violent outburst, she would search her memory for something he’d eaten in the last two weeks that might have caused it. There is so much more I could say but I think that gives the picture.
I struggle to tell any details: saying nothing protects my family’s privacy, and that is important to me. But — t drives me crazy that so much of sibling issues are papered under.
I’ve never wanted to kill my brother, but I understand well the frustration behind Marissa’s comment, “I don’t hate my brother. I’d kill for him. But I could kill him too.”
— AmyDear Lily
I read your comment and my heart hurts for your sake! While there is no (diagnosed) Asperger’s or Autism in our families, crass injustices based on real and perceived disabilities abound here, too. I could sing you a song…
The only thing that worked for us (me and my husband) was to distance ourselves from the culprits. These include certain of the parents (who are still living). We found that once we let go, we could focus positively on our lives. I have to add that inheritances are not yet in the picture but we both have no illusions.
I have a friend who had no disabilities in her family at all. She was the one who looked after her mother to the end and took care of things (she is like that - she still takes care of everyone who needs to be taken care of). But she was left out of the will! Not by accident either - the will actually stated how her two sisters were to divide up everything between them, and if there was anything they didn’t want, they could choose to leave it to her. Needless to say she got nothing.
There are many ways in which parents do their children in, and in which they commit gross unfairnesses and even cause problems. In most cases the reason behind that is the parents’ own pathology.
I wish you strength.
— Lyz“Where were the autistic children when we were growing up 55 years ago? I don’t remember anyone in my school or activities who would fit anywhere on the scale of having autism.”
Nothing personal, NurseTerry (and others who have posted similar comments about various conditions in this blog), but I sure am tired of reading this sort of thing. It’s based on speculation, not facts.
How do you know kids with autism were allowed out of the house when you were growing up? They may have been locked up in mental wards. Or they may not have survived infancy; the infant mortality rate back in the “good old days” was higher than it is now. Also, there is a great deal more awareness of the danger signs of autism, so more kids are getting diagnosed with it, rightly or wrongly. You could say this (to some degree) about just about any medical condition that’s commonly diagnosed nowadays, couldn’t you?
Why not focus on the material presented in the post, or do some research and educate yourself about why autism diagnoses are growing exponentially, rather than posting this sort of speculative question here?
If you’re not sure where to begin, a reference librarian or colleague at your job (since you’re in the medical field), or at your nearby public or university library could help you get started.
Sorry if I’m ranting, but this has been sticking in my craw for a while now. Thanks for reading.
— Heron@Lily: I don’t have a sibling with autism, but you have my sympathy. Have you considered consulting a lawyer to find out what your options are? I suspect there’s a legal way for you to untangle yourself from this mess. If money’s tight, a lawyers’ association in your area may be able to connect you with a professional who could advise you for a sliding-scale fee. If you have access to some sort of public legal library (usually housed at the county courthouse), check there first for help with how to proceed.
Just because your parents weren’t smart about how they settled their affairs, that doesn’t mean you’re stuck with the situation now. Set yourself free.
— HeronI have a 12-year-old son who has a hodgepodge of symptoms: ADHD, PDD-NOS, some OCD. He is mainstreamed with some supports but has never really had friends. Unlike many on the spectrum, he is sweet, very caring, and imaginative but has restricted interests and has to be taught about things like lying, how to handle social situations, etc. My daughter, 17, has never wanted anything to do with him and resents the extra attention he gets. She is an honor student and popular, but sometimes I wonder who is really the disabled child.
Lily, your story sounds worthy of an article or interview. GRASP is an organization with chapters throughout the NYC area, and I think they do offer support for adult siblings.
Nicholas, your button is a great idea. I know someone who had shirts made for her son that said: “I have bright eyes, a big smile, and autism.” I once thought of having one that said: “I have autism. What’s your problem?” Too obnoxious, I know, but honestly, the behavior of “normal” people in public places has deteriorated so much anyway.
About the increase in diagnoses: Professionals have told me that they will give the autism diagnosis to kids they would have previously said were mentally retarded. First, because autism gives the parents more hope of improvement or even cure, and second (in the case of early intervention), you’ll get much more therapy and services. So this can certainly skew things.
— ErsNurse Terry,
Autistic and asperger kids were definitely around when you were a kid, but there were no laws to insure they had a right to a free public education, so you may not have seen them at school. Many were put in institutions. And many mild ones were not diagnosed, you may have just thought of them as oddballs.
— betsyASPERGER’S DISORDER: The bad news; the good news and, a modest suggestion for some amelioration…
Asperger’s disorder is part of the autistic spectrum and the cause is not known. Until recently, ‘bad parenting’ was seen as etiology. We now know that this is not true. Biology seems to be the culprit. I predict that the genome project will yield more specific causative knowledge and, perhaps useful preventative and intervention methods.
The bad news: as described, the situation is beyond being constantly frustrating for all the family members.
The good news: Asperger’s disorder is considered to be far more benign than most other diagnoses which fall under the rubric of ‘autistic spectrum.’ (Severe autism can lead to a mute person who is capable of NO POSITIVE FUNCTIONING.
Suggestion: in the situation presented, improvement of social skills via behavioral therapy intervention. (B.F. Skinner, Pavlov… And, counseling with a “disinterested” party — be it an experienced psychologist, counselor, social worker, intelligent and sensitive lay person…
Let’s hope for the best!
— David Chowes, New York CityI have to agree with Lily-there is a dark underside to all this that most people don’t want to hear or know about.
In some of these cases-like the one above and in my own experience–the sibling is violent. Rather than be protected, the sibling is expected to be a sort of martyr to the cause–and congratulated for it.
Look at this story and the comments, for example. The brother chases Marissa around with a knife! Yet no one seems to find this shocking or worrying–Marissa says the brother wouldn’t really hurt her. Hello?! My brother also chased me around with a knife, and he sure wanted to hurt me. My guess is Marissa knows the same, but doesn’t feel comfortable saying as much because acknowledging the reality is still taboo.
My brother made my life a living nightmare for years, but rather than confront the reality I was always told to grin and bear it. The denial of reality just made the situation worse, and added to my rage and fear. Not only would no one protect me from my brother, they wouldn’t even acknowledge there was a real problem.
Rather than commending Marissa for loving her brother, she should be commended for having the wisdom and self-preservation to stay away. She is not responsible for her brother, and should be free to make her on way in life nightmare free.
— AbbyYou’re right, Lily. When I grew up in the fifties, the autism sperctrum ranged from “retarded” to “he’s a little weird, but he’s a helluva mechanic”. And today, accomodating the autistic ranges from providing a little added social support to “I’m not going if Joe’s going to be there”. I have 2 autistic nephews, one quite high-functioning and the other reasonably so. Even so, it’s sometimes difficult to deal with either of them.
— Nancy Brownleemarissa and her family need respite help.
— AnnieLily, #8, has the right of it. The explosion in autism diagnoses has been matched by a decrease in the number of children diagnosed as mentally retarded. In addition, some children who are now labelled with Asperger’s would have been called quirky, stubborn, or peculiar during the fifties and sixties. I remember growing up with several such children. They were regarded as odd but “normal.”
— kalebergI, too, grew up with a brother with Aspergers Syndrome, who is now in his 50s. (Yes, Nurse Terry, such children did exist.) He was erroneously diagnosed with mental retardation as a young child, due to the abysmal ignorance of the medical community at that time. He was, in fact, extremely intelligent, but due to his peculiar mannerisms and deficits in social communication, he was bullied and laughed at throughout his school years.
I feel the deepest empathy and admiration for siblings like Marissa and Nick. Having an autistic spectrum sibling is a very difficult thing for a kid, even if, as was true in my case, that sibling doesn’t have huge tantrums or meltdowns. An autistic spectrum sibling is usually incapable of dynamic, reciprocal social relationships that make play and friendship possible. This is a great loss for the non-autistic sibling. I think sibling support groups are a wonderful idea–I wish they had been around when I was growing up.
— RachelLily is right: mentally retarded was a frequent diagnosis, as was “childhood onset schizophrenia.” Bottom line, these kids were institutionalized, or were the “95 pound weakling” that was perennially beaten to a pulp by more “virile” guys. Their lives were not visible. But they were definitely there.
I have three children, two boys and a girl. The girl and one boy are twins, the second boy is about 2 years younger. Both boys are autistic. My daughter is neurotypical. on the one hand, she understands them and is quick to help them. On the other hand, she’s now old enough to understand that they are never going to be socially adept, and to resent the attention that they get from us/bring upon her in social settings. We got her into a “sibconnections” group for that, because she’s going to need somebody to talk to. We also make certain to spend alone time with her, just one on one, on a regular basis - as we do with each of the children. Finally, she gets to attend a sleep-away camp where no one has ever met her brothers and she has none of those issues with her whatsoever. As far as anyone knows, she’s just another girl. There she can be completely who she is without reference to her family dynamics.
These steps are the best that we could do with the situation, and for now they seem to work for us. If anyone knows of siblings who are under stress dealing with the differences, and the interface can be very stressful, I would recommend these steps. But I cannot emphasize enough how valuable these sibling relationships are for both sides of the neurological divide: my sons will have to deal with “NTs” to get by, and they learn how in part with their sister (by far the most forgiving NT they are likely to encounter). My daughter learns to communicate across a language barrier and to deal with people who are unlike her - again, a skill she will definitely need. If we do this right, everybody will come out of it with strengths they can use.
And there is a massive amount of planning involved in this - Lily is right. One has to work from a very, very young age with an eye to “self help” skills and plan that, if those aren’t developing as they need to, regular assistance from an aide or a collaborative living arrangement will be necessary. I am very practical when it comes to my sons: they have to learn to self-calm, they have to learn to deal with interruption and change, even as they learn to insulate themselves from it to the extent possible. I will not always be there to take care of my sons, and I’m keen to have them move out. I don’t want my daughter to have to deal with this when I’m gone, either. All of my work in getting my sons to adulthood is to ascertain the maximum level of independence that they can happily manage, and then to get them equipped for that. And then to put any finances that there might be in order to support that. Hopefully without shorting my daughter.
Speaking as a parent, managing the differing needs and strengths of these two groups is difficult. And no, people have no idea what they are getting into when they have kids. But once we’re here, most all of us do the very best that we can manage with the tools we’ve got. I love all of my children, and I look forward to the wonderful contributions that they will make to the world on their own scale and in their own time.
— Just Mom