Autism Sibling
February 18, 2007 by Kristina Chew, PhD
Filed under Safety, Science
Siblings of Disabled Have Their Own Troubles was the title of an April 4th, 2006, article in the New York Times (Kassiane of the Rettdevil’s Rants wrote this in response.). This February 18th New York Times offers a much more gritty account of autism siblings. Tarah Perry of Bastrop, Texas, is 14 years old; her autistic twin brothers, Jason and Justin, are autistic. These paragraphs stand out the most to me:
Tarah’s earliest memories are dreams she had when she was very young, all of which concern her brothers. In one, she and Justin and Jason were out in the backyard, where their grandfather was showing them how to use a telescope, “but there were holes in the yard with monsters in the holes, and my brothers fell into them, and one of them got a broken leg.” In another dream, “they got chemicals in their eyes and went blind.” In a third, a thug beat them up.
She has long known that her brothers are vulnerable. ……………..
……….. a complaint was filed against a boy who had recently started inviting the twins over to his house. (The boy’s father denies that his son did anything to Justin.) Soon other kids were approaching Tarah to tell her they were sorry for what had happened; the news had somehow made it around the middle school, much to Justin’s dismay. For a while, the boy was still around: “I’d see him and I’d almost start crying,” Tarah says. “One day I saw that he was talking to them, and I got really, really worried, like ‘Oh, my God, what should I do?’ So I pushed them away, and then I was just yelling at him. I started screaming, ‘If you even come near my brothers I’ll kill you!’ He said, ‘I didn’t do anything Tarah, I don’t know what you’re talking about.’ I told him to go away, to not come near them, and that’s when my mom pulled up.”
The Perrys and the boy’s father say the case will be tried — because it’s a juvenile case, none of this is in the public record, and the Bastrop County District Attorney’s office would not comment.
Tarah Perry worries about whether or not her brothers shower, she tries to teach them to do household chores, she calls them names, she imagines what life would be like if her two brothers did not have autism. My son Charlie is our only child and, while this has enabled us to focus all of our attention on him, I do sometimes wonder, what would it be like if Charlie had a sibling like Tarah?
Jeff Stimpson
Jill Cornfield
Not all siblings are so negative.
Here’s something that my daughter wrote about her brother last year:
http://www.aspergianpride.com/Forum/viewtopic.php?t=136
I am very thankful that Buddy Boy has a younger sister (Sweet Pea). She has unwittingly served countless hours as a therapist for Buddy Boy, engaging and interacting with him.
She also models some of his atypical behaviors sometimes, but as long as they’re having fun we let them “go with it” to a certain extent.
I’m fairly confidant that Sweet Pea will end up serving as a life long advocate for her brother once we are gone, which makes me very happy.
One other thing that my wife Liz mentioned last night. She was talking to another “autism mom” in our community yesterday, and both Sweet Pea and this woman’s daughter (younger female NT siblings of older autistic brothers) have recently asked if they were going to be autistic when they grew up. I’m not sure what to make of that. Sometimes kids ask questions with deep meanings behind them, and some time it’s just asking something more superficial.
Thanks, Bonnie—-I’d like to know more about the writer of the Times article, too—and to hear what Jason and Justin, and Tarah, have to say themselves, too.
I think Charlie would do well with a younger sister—–he does like to hang out with the daughters of a friend, for sure.
And perhaps it would be good to have an article with the title of “Their NT Sister”?
My NT daughter has gotten along well with her younger Asperger’s brother, always being a bit protective, and sometimes getting into a natural sibling rivalry. Now that she’s 20 and he’s 15, they have a great friendship. Her big concern is genetics; she will almost certainly carry the genes for his blindness (Lebers Congenital Amaurosis), autism may also run in our family genes, and her significant other has ADHD. They talk openly about getting genetic counseling if they marry and have children.
I know a disabled person whose sibling refused to have biological children because they were afraid the condition was genetic. The disabled person in question took it as such things should be taken — as an act of degradation (cloaked of course, as such things usually are with disability, in the “good intentions” that don’t mean much at the end of the day).
If my brothers had “genetic counseling” to avoid having children like me, I would probably want to thwap them over the head with a cluebat.
By the way I’m really curious what an “autism sibling” is supposed to be, anyway.
I’m autistic, and so is my brother, and so is my father. Non-autistic people are in the minority in our family, and even the non-autistic people are significantly atypical neurologically in other ways.
This is why I find this garbage about the “normal” siblings and the “abnormal” siblings falls apart totally if you look at it too closely. It presumes this division is supposed to exist. I bet a lot of siblings go to these support groups and get explained how they’re “supposed to” feel about their siblings, which would not be how they felt about their siblings if they were not raised in an environment with such a crappy attitude towards disability.
I’ve sensed that some relatives are more than uncomfortable when I’ve mentioned about autism being genetic—-I suspect because they are afraid their children will have a child “like Charlie” (when rather they should be so lucky).
We have kids. I don’t know how much support each of them will need as an adult, but my main goal in raising them is for everyone to reach adulthood without resenting anyone else in the family. I figure if we get that far, then anyone needing support or advocacy will probably have a sibling to help with that.
(They all have autism diagnoses of varying degrees of “severity”, whatever that means. But I think that one of them will be able to advocate for either of the others if it comes down to that. Really hard to tell when he’s 3, though!)
The NYTimes article goes into a fair amount of detail about Sibshop and about research being done about siblings via a behaviorist at the Douglass Developmental Center of Rutgers University, NJ. Regarding independence: How independent does anyone become, “NT” or not…….. The NYTimes article mentioned at the end how Jason and Justin Perry feel annoyed at their sister, Tarah, because she’s becoming a teenager.
In reading the article and comments, one recurring thought came to mind; ALL siblings (especially older ones) are simultaneously protective of their siblings, mean to their siblings, and annoyed/embarrassed by their siblings. And EVERY teenager is mortified by their family members’ mere presence - they want their parents and siblings to blend into the woodwork and do nothing to draw attention to themselves - and have no problem telling those family members to get lost. And luckily, all siblings eventually outgrow those feelings of embarrassment (even the NYT article acknowledged this).
The biggest difference I see between the sibs of NT kids and sibs of autistic kids is the world around us. Siblings of autistic kids are MORE protective, because the world can be so judgmental and cruel to anyone different. And siblings of autistic kids are MORE embarrassed by their siblings for the same “judgmental world” reason. But unlike siblings of NT kids, these siblings actually feel guilty for their embarrassment/mistreatment of their autistic brothers and sisters! (Something I don’t think occurred to my big sister until she was in her 20’s or so!;) ) Therapy is a good way to resolve issues with guilt, so I guess Sibshop is probably doing a good thing.
Shannon, these are really valuable insights. It’s not an entirely easy to sort out what is any sibling’s relations and what is different, or more difficult, with an autistic. A number of young women I have taught in college classes have told me they want to major in education or speech therapy or nursing because they have a sibling or cousin (often a younger brother) who has a learning disability or, indeed, autism.
Kristina, I have no doubt that is the case (re: siblings influencing one’s career choice). My 4 1/2 year old son (NT) is very intuitive and sensitive to people’s non-verbal expressions of emotion. (His preschool teacher thinks he will become a motivational speaker - too funny!) Part of me wonders if this side of him has been shaped by his minimally-verbal little (autistic) sister. He IS always telling me what she is thinking… (”no mommy, she wants juice, not milk!” Typically bossy older brother!
)
Love, love, love those kids of mine …
Right now, in this little slice of time, brother and sister are in perfect harmony. She cries, he comforts. He wants to rough-house or run around, she is ALWAYS willing (Lola is a wild child)! And there are moments of real, interactive play (a loose game of tag or ring-around-the-rosie) that make my heart sing. Even the fights are good - one of Lola’s earliest words was “SHARE!” which she would holler whenever he had a toy she wanted - because that’s what having a sibling is all about.
Big brother is only minimally curious about why Lola doesn’t talk much, probably because she is still so young (almost 3). I have tried to answer him by reminding him of the words Lola does have and by pointing out her other ways of communicating. For example, one of my favorite things she does is to rub our ears. (This is for comfort, when she is very sleepy or upset. My son used to stick his hand up my sleeve and fidget about, too, when he was sleepy. I have very touchy-feely kids! Of course, her psychologist loved to call her ear-rubbing a “stim” … wonder what they would call brother’s scritchy-scratch deal or my own pacing the floor…) When she would rub big brother’s ears (which he didn’t exactly enjoy) I would tell him it meant she loved him, because she only does that to those in her “inner circle.” I think it really sunk in, because my son now loves to notice the various ways Lola expresses her love for him. “Mommy, she’s hugging me!” “Mommy, she’s holding my hand!” sigh
From Blogging Baby:
I did not read the link Kristina put in for NY Times, but take her complete word for it ( I choose not to read it (The NY Times) for other reasons ;). I can say that growing up NT (although many would argue that, Ha!) with an NT sibling, I would agree with Shannon that there are many similiarities to both situations. However, too, having an NT older son and an autistic younger son, I have witnessed their world colliding in too many ways. My NT son wants so badly to be a part of his brothers world, and has learned to do everything his brothers way in order to gain those connections whenever they are offered him. He lives for moments together with his brother. Unfortunately, those times with his brother Sam are few and far between. Yes, NT siblings are innately protective of their siblings and should be, but so am I. Unfortunately, my NT son has lost friends because of my decision to not allow some of his friends back to our home because of how disrespectful they were to his autistic brother. My NT son understands that their behavior was cruel and not acceptable, but then he has to deal with them at school making fun of his brother, and then he feels the brunt of it when he is invtited to less things because he has become so picky about choosing respectful children to be friends with. While we are proud to raise a child who respects diversity among people and who tries to take the high road when others ridicule him, it seems a lot to ask of a 9 1/2 year old sometimes. He is in his 3rd year of Sibshop classes. He loves them, he learns to most importantly be an advocate for his brother and others, but he also learns how to respect everyone in this world more deeper. I don’t care what the research ever says about these types of supports, we all need support sometimes, NT or not.
Peace.
Your NT son and Charlie are just the same age—-that’s a lot to balance in a family. I know it would be a great thing for Charlie to have a sibling and yet I also recognize that would mean, well, a lot more. Not having a sibling means that we have to reach out and look for kids for him to spend time with—-not a bad thing to do, either. Yes, peace.