Brothers and Sisters
December 31, 2007 by Kristina Chew, PhD
Filed under Health
Charlie is an only child so reports about siblings of autistic children—like that by novelist Karen Olsson about a young woman named Tarah Perry in the February New York Times Magazine, and in the December 24th Time magazine—lead me mostly to speculate. Charlie does have a number of cousins on my side of the family who are just bit older than him, and some of whom have been very interested in him; if we lived nearer to them on the West Coast, I would try to have him spend more time with them. But occasional visits are a different matter than living day in and day out with someone. Even if I only consider the many times we have moved (and mostly for Charlie’s education)—this would be eight times—-I would think another child would be unsettled at the least, to have to keep on packing up and saying good-bye to friends “because of” a sibling.
Nonetheless, “…. the good news is that typical siblings often turn out to be more compassionate and caring than average,” reporter Amy Lennard Goehner, whose autistic son Nate is 14 and whose “‘typical’” son Joey is 8, writes in Autistic Kids: The Sibling Problem. She lists seven challenges that will “most frequently confront typical siblings — and their families — with advice from professionals,” along with solutions. The list includes “#2: it’s not fair!” with the solution “create special time”; “#4: he’s so embarrassing” with the solution “encourage honesty—and laugh.” Goehner writes:
“Interestingly, a lot of these [typical sibs] are more outspoken,” says [Judy] Levy [director of social work at] the Kennedy Krieger Institute. “They’ll go up to people and say, ‘Yes, that’s my brother. He has special needs. Do you have any questions?’”
My son Joey is one of those kids. When he was 6, we were at a bus stop when Nate started jumping up and down and making weird noises — just being Nate. When Joey’s friend started making fun of Nate, Joey got right in her face and said, “Do NOT make fun of my brother again! Everybody learns differently.” They were my words coming from Joey’s mouth.
Reflecting on the notion of the “sibling problem,” I’d like to know more (as I have from Kassiane) about how autistic siblings feel about their “other”/”typical” siblings (one of whom is quoted at the end of the Time magazine article hoping for a “neat little pill” that might be a cure).
More than a few students studying to be teachers and speech therapists, and more than a few teachers and therapists themselves, have told me that they have a brother with learning disabilities, or ADHD, or autism (indeed, one of our first ABA therapists had an older autistic brother), or some other kind of “difference.” And each has made clear that their sibling was a leading motivation for them choosing their profession, and many of these teachers and therapists have been among Charlie’s most remembered. I have, though, to note what one young woman who has worked with Charlie for the longest period of time first said on meeting him. She was Charlie’s babysitter when she was in college, then an aide in his classroom, then an ABA therapist, then his speech therapist, and I regularly seek her opinion on his programs and progress (and we have plans of taking Charlie out to figure skate, as she teaches lessons); there is little that she has not done for him. The first time she came to our house to meet Charlie she smiled at him and said, “I’m an only child too, Charlie.” (It was the start of a good connection……)
We have to try a bit harder to “find kids” to be around Charlie. But I also tend to think, he has a lot of big brothers and big sisters out there whose hands he reaches to hold, and who he’s glad to be walking together with.
When will they learn to talk to us about this shit? They do at least 5 of these a year, I swear.
If I shove that “neat little pill” down their throats, will it make them autistic?
I have two siblings of my own. The younger brother, in any event, did not get even the slightest shred of sympathy, or even respect, for me (rather, a sense of superiority, though sometimes it is hard to maintain, in truth). The older sister, on the other hand, is very much a respectful person towards me who, while finding ever so much humor in me, is a good defense and will get in people’s faces if they are mean in some way (though, honestly, at many points I really don’t care when she does, and the incidents as a whole aren’t common anymore). Likewise, she has an ADHD diagnosis, and I’m likewise prone to be defensive of her in that regard. It’s an interesting relationship in that respect.
Cliff
I’m the eldest child in my family, and for the most part, my siblings seem to accept me as just being “Anne”, with all that entails.
My brother (about 3 years younger) actually used to help defend me against bullies when we were in grade school. My sister (about 6 years younger) used to complain about how I “embarrassed” her in public and “made a spectacle of myself” for how I dressed/interacted (I still don’t know exactly what she had a problem with), but she’s gotten a lot better in recent years and we get along fairly well.
My family is pretty quirky overall and I don’t think many people in it (with a few notable exceptions, but they weren’t siblings) had some expectation or feeling of entitlement to some typical, idealized experience of living and interacting with others. I’m not the only person in my family to be diagnosed with an ASD, so there’s a lot of genetic unusualness going on which probably helped a lot!
Have you ever opened a drawer at the bottom of the fridge and seen a weird, fuzzy little lump…the sight of which caused you recoil in shock? That’s how my siblings react to me.
To remedy the situation, I created benevolent hand-puppet siblings. Unfortunately, even they recoil from me (which is either bad craftsmanship or self-fulfilling prophecy).
I don’t know if it’s really because they’re so different that siblings feel embarrassed about eachother. Especially the younger ones seem to feel that way towards the older ones a lot anyway (from observing all-NT friends and their all-NT siblings), and all siblings often seem to feel like the other ones get to do more than them. All of us at home felt like it was not fair that the other ones got to do this-or-that plenty of times, and we’re ALL autistic. We didn’t feel embarrassed all that often, at least I did not, but maybe that’s because we’re not so easily touched by social conventions and peer pressure.
For all of us, we never moved. My parents once considered moving house within the same town and even that got scrapped.
I also never felt embarrassed about my parents in puberty the way most people in my class seemed to feel.
And I’d hope all siblings defend eachother from bullies etc by default, sheesh. You have to wait to defend your family until they’re ’special’ to do this? Of course, it does happen that people just don’t like eachother and are forced to live in the same house until they can move out.
Why is it such a big deal to defend your siblings from bullies? Why does that make the NT kid so great? I’d think of that as something very ordinary, and find it strange if they do not.
If people choose to be psychologists/psychiatrists/whatever else because of their siblings that are ’special’ (yuck), then I would wonder how do they view those siblings? From all those words in those interviews it kind of sounds like, through their parents, they learned to look at their siblings as some sort of odd creatures, maybe somewhat inferior, but to be loved (like that makes up for it).
I’d warrant that the honest answer to why “people choose to be psychologists/psychiatrists/whatever else” is the more obvious one — they’re trying to figure out something about themselves. The one relative I have who has a degree in social work has not showed much of an understanding about autism and Charlie……..
I wasn’t the “easiest” of sisters to have when I was in my own adolescence — no bullying; I tended to avoid trouble, if anything.
I am the middle child and my older sister had a stroke at age six so I had lots of stress growing up. I was two and she was six at the time of her stroke so I was handed from care giver to care giver for a few years. I always stood up for my sister, advocated for her and we are great friends to this day.
There were periods of time where she was very jealous of me and made it clear that she could not stand seeing me do things she could not. However, life plays out funny since now she has given birth to two children and me zero. She has a degree and I do not. Over all I would say she is the better person out of the two of us. I look up to her and admire her many strengths. But, don’t get me wrong. Growing up with her was not easy. I remember stressing over how to explain her to my friends. I don’t remember being given any guidance in this area except that I had to include her in my play as much as possible. Considering she was four years older than me it was often difficult.
My daughter M is an only child as well so I understand how difficult it can be to find kids to play with. We have thought about adopting another and I do think my growing up with my sister and her many health and developmental struggles is an issue when it comes to making this decision. I saw my mother struggle to spread out her attention to my disabled sister and my little sister and me. I don’t know how she did it. It was without a doubt exhausting. I just don’t think I would have as much energy. M is also the type of child who requires so much quiet time, alone time and I can’t imagine meeting those needs with another child in the house all the time. And then if we had another child with expensive medical needs I don’t know how we would afford everything.
We too moved many times for schooling in our area. Very difficult to deal with, especially when nothing worked out.
All 3 of us and my mother needed plenty of quiet alone time. If you’re not an only child you find some way of getting that even with a house full of people. I mostly escaped in a book. I could be sitting in the middle of the living room with two brothers and even their friends playing ‘Turtles’ loudly all around me and not see or hear a thing that way. The only thing I couldn’t block out that way was when they started throwing things at eachother (as a game), because of the high chance of projectiles hitting me (none of us have good aim). Sometimes I’d sit in the closet under the stairs and lock the door from the inside, with snacks and drinks. Doing stuff on the computer also worked well, although that had a tendency to draw people watching over your shoulders which was too invasive and just made me irritated even when they kept strictly quiet. None of us had a tendency to go to our own rooms to play. By now I can’t concentrate without a constant background noise.
I don’t know much about medical needs (all we have here is asthma and hayfever and a load of allergies, autism is not something anyone ever considered giving us special therapies for, although for one of my brothers my parents sought help for extreme fear of failing and depression), but most of those here would be covered by insurance (everyone is insured), even a lot of things that aren’t really necessary for staying alive (like some ‘therapies’ for autistic children; I think of it as education: they don’t treat autism, they assist people with learning or other things) will be at least partially covered. The NVA (our national autism society) also has a special deal for all its members with one insurance company. I’m fairly glad with the NVA overall, although some attitudes need improving, and one commercial they brought out recently is quite awful.
A friend of mine I think did become a psychologist to learn more about herself.
It’s disturbing that exactly the one relative to go into social work does not show much insight or understanding.
I do feel very uncomfortable when I hear some people talking about their reasons for becoming healthcare or social workers or psychologists. Reminds me of some of Amanda Baggs’ posts on the subject, and her do-gooder posts. She knows how to put the worry I feel into words much better than me.
And how I feel about my siblings, I think like a lot of people: I am close to them, feel comfortable around them. I think they can be very funny, sometimes endearing, often they annoy me to no end. I don’t feel embarrassed about them at all now, and haven’t felt embarrassed about them in the ways described by a lot of people at any point, although I can recall every now and then feeling embarrassed at them for other reasons. We have a lot of the same but also a lot of very different opinions which means we can often have very large and loud discussions.
We had our second son when our oldest was 16 months old, and we think that our choice to have a second child so quickly was in some ways a lifesaver for TH (our oldest). Will, our middle child, is “quirky” but not as obviously as TH, and the two brothers have been inseparable almost since the day Will was born. They share a room and toys and a queen-sized futon and although they fight like siblings will, they are very close. I think actually that Will may sometimes imitate some of TH’s more obvious traits–it’s hard to tell where imitation begins and native individuality ends there. And our youngest son, our baby, who is VERY MUCH like his oldest brother in every respect, also is benefiting from being able to socialize and play with these two built-in social-skills buddies. I really think that TH would not have reached the point he has if he hadn’t had to maneuver through most of his childhood with another person just 16 months younger constantly at his side.
My whole family is pretty strange, but we are all very close. I’m 12 years older than my sister and five years older than my brother, and we are very close and tolerant of one another. There are seven cousins all under age seven among our children, and we’re together often (we all purposely chose to live near each other)…more social interaction practice and family time for us all.
One part of my family is much more open about “difference”—it’s just always been there. Other parts of my own family have (I think!) plenty of difference and various issues, but it’s not talked about, though I do bring things up.
I can see how Charlie would benefit from a sibling. We’re a tight team of 3, Jim and Charlie and me, very symbiotic—-we’ve each spent so much time one on one, too, with Charlie that I feel it’s enabled me to understand him so well and to communicate, without words and with.
@ Norah: You noted that “I do feel very uncomfortable when I hear some people talking about their reasons for becoming healthcare or social workers or psychologists. Reminds me of some of Amanda Baggs’ posts on the subject, and her do-gooder posts”—-I feel the very same! Said relative gave Charlie a toy for a 2-year-old when he was 9: ‘Nuff said!
“Said relative gave Charlie a toy for a 2-year-old when he was 9: ‘Nuff said!”
That’s horrible, what did he do with it? Even though I must admit I still like toys for children of all ages (and I also still watch cartoons for children of all ages. Several relatives with children in the toddler age were surprised to hear I knew so much about Dora the Explorer).
Zero interest. It was some sort of plastic toy of a surfer and he certainly loves the ocean but, well, there are so many other things to give a 9 year old boy who likes to swim.
Comments were fascinating. I never enrolled my daughter in the Sibs Camp locally; I don’t know if it would have been valuable. I do know that she’s very open minded toward disabled people, doesn’t look down on them, but accepts them as people. It helps me to hear from others with autism in addition to parents; I hope listening to conversations like this will help me parent my disabled teen son and my neurotypical daughter.
Neither of my boys is neurotypical. The yougest is glued to the hip of his older brother and most of his progress if you will is in thanks to wanting to be so much of a part of his big brother’s life. His big brother plays ‘best’ with children who are about 4 or 5 (at least he seems happier and less stressed out). I am so thankful for both of my boys and the relationship that they have naturally forged. I don’t know how it will progress, but I hope to nurture it as best as I can.
http://miscthing.blogspot.com/2007/10/brothers.html
http://miscthing.blogspot.com/2007/07/brothers.html
I find the difficulties are in the SPECIALISTS having no stinkin’ clue about larger families. Like, why *can’t* G have a peanut butter sandwich if he doesn’t like the casserole?
It sounds reasonable to her, but if you don’t have a doctor’s salary, and are living on one income, you don’t open that door if you know what I mean. I can’t be serving five different meals to each of my five different children EVERY night. I don’t have the time or the MONEY to do that. It’s casserole; you don’t like it, and you can leave the table.
It bothers me that there is little understanding of these issues. Obviously we can’t have three bowls of cereal for breakfast every morning for money and sugar reasons… not to mention TIME if we’re already waking up at 5:30. Why can’t they see that? They would look ONLY at the fact that if I give in, the fights we have over who eats what food when (G’s obsession) would stop. Sure. (IF I had the money and time, which I don’t.)
But don’t think some OTHER problem wouldn’t crop up. You know how that goes!! The specialists don’t seem to get that there ARE other children in the family because they only TREAT one at a time. But in doing so sometimes they put the parents in impossible situations. We can only do *so much* accomodating. No, he can’t have his own room. No, he can’t have new clothes that just fit his skinny body. No, he can’t bring his tiny toys into the living room with the baby. Yes, he has to do chores… everyone does because otherwise the family will fall apart and nothing will be clean and NO ONE will be fed.
Urrgggh.
OK. I’m done now… but with “treating” autism (if you will) there are trade-offs socially and with dealing with professionals. I’m sure G gets along better with others b/c he has to and he knows no other way, but of course we have more meltdowns and the like than we would have if he were alone in the house with us parents.
Thanks for sharing this—Charlie, being not only an only child but an only grandchild, is quite inundated with attention. This has its benefits but also plenty of drawbacks. It’s one reason it’s so important that he goes to school and does other things with other kids and has to learn “we have to wait for him.” And the big lessons this past year have been Jim and me telling Charlie that we need to do X or Y and to ask him to wait and accommodate us (fancy that).
Kristina, your post about part of your family talking about and accepting “differences” and part not reminded me of my husband’s family. Both of his parents grew up on farms in the Depression (they were older when they had him) and have been very successful in every way with their lives. They also until recently would be pretty superficial about which personal topics fell within the limits of general discussion. Very little was ever said about my husband’s family’s various quirks–although there really are many–while my family would be loud and lively and boisterous and direct and rowdy about it all, very open, very candid. It’s confusing, in a way; my family’s so odd, but we’re also very social with each other (with long breaks in between!), while his family seems quite “typical” but has that insularity and lack of interest in these personal discussions that might characterize someone on the spectrum. His parents, for awhile at least, fit exactly that profile of grandparents who say, “Oh, he just needs more discipline,” or “a good spanking would fix that right away,” or “I just don’t see that there’s anything wrong with him.” That last is my favorite, I think. At least there, we were in agreement. I love them, but they’re from a different era.
My husband and I have discussed where we think our children’s traits might have their origins–him or me–and it seems pretty clear they come from both of us. Since he and I are essentially like twins separated at birth when it comes to how we think and our interests and behaviors, that’s not too surprising.
Bobby seems to have a similar family situation to Charlie – he’s an only child, the only grandchild, and will most likely remain that way. I do wonder how a sibling would have changed things and how Bobby’s differences would have affected that sibling. I have a younger sibling with a chronic condition, and having that as a part of my life from middle school on definitely made me more protective of those with delays/differences than I probably would have been otherwise.
As for comments like Joey’s (from the quoted article), I swear I teared up when I heard what my goddaughter said a year or so ago. One of the kids in her neighborhood was making fun of the way another kid spoke and calling him stupid, and my goddaughter got very indignant and said “My ‘cousin’ Bobby has autism and can’t talk much yet but he’s not stupid, he’s not, and so you shouldn’t call [the other child] stupid just because he doesn’t talk well – you don’t know why! He’s probably smart but his mouth doesn’t work right yet!” I was so proud of her
My two older stepdaughters are MUCH older, and Julia (my 15-year-old) has always looked up to them. They are like her second and third mothers. But, from them, and from having two ASD younger siblings, she has matured into a 15-going-on-30-year-old. JP and Ely (Asperger’s and Kanner’s autism, respectively) worship Julia. JP (12-year-old) and Julia tie it up now and then, and Julia can be easily annoyed by some of JP’s quirks, and she is known on occasion to bark at him. She can also be rather disgusted by some of his less-than-stellar hygiene habits (which we are constantly working on). Now, with Eleanor, who recently turned six, Julia is as adept a “therapist” or “teacher” as I could ever hope for. There are plenty of times Julia can translate what Ely says that I cannot. And I have to keep myself from laughing when Eleanor gets upset with me for telling her “no”, and she goes flying down the hall to Julia’s room, bangs on her door and cries out for her big sister.
BTW…Julia was just elected to the National Honor Society, and is currently looking for service projects. She will be volunteering at a developmental social-skills camp this summer, and has volunteered (but turned down) for her brother’s Asperger’s social-skills group (they required trained professionals…as if she is not one!).
AJ
I have an “ex-brother.” The “ex” part came about when I heard a knock on the door, and answered, and found myself served with lawsuit papers. The process server said that he was not surprised, and that he had to do this all the time.
The funny thing is, that according to the few people who know both of us, my ex-brother is AT LEAST as weird as I am, but suffers from the delusion that he is perfectly normal. My only means of communication with him, these days, is by having my lawyer write a letter to his lawyer
P.s. I’ve written as much in other places on the Intartubez, so I’ll say again:
If I ever meet the ex-brother again, I’ll not delope.