Today is my son's 15th birthday, so it seems a good time to talk about the special place that neurotypical siblings have in the lives of people on the spectrum. And by the way - don't believe a thing either of my children says about this issue - they will tell you they don't like each other but I know the truth. My reflections will touch on a variety of spots on the spectrum, as we know people more profoundly impacted than Alexa; but I don't pretend to know what it really feels like to be there and so I'm going to focus more on the Aspie sibling as that's where we live.
Ben is four years younger than his Aspie sister and as such has given her the opportunity to be "in charge" and to teach him all sorts of things - which cartoons have the best characters, how to play Pokemon on a Gameboy, and how to navigate school and daycare. I've always found it really touching to see Alexa helping younger kids (she loves them) and Ben was her first "pupil." Somehow folks forget that as "big" siblings, our kids on the spectrum are role models (often for the better but occasionally to our frustration - think specialized interests) and this is a really nice opportunity for them to shine. I recall that when we told Ben about Alexa's diagnosis he said "I have Bensberger's Syndrome, right?" He totally saw the diagnosis as a good thing to emulate, not a detriment, because he wanted to be just like his sister.
It has been interesting to watch Ben grow into his own space in our family. Even though he's the younger sibling, Ben still exhibits the caring and concern often seen in siblings of kids who are somehow "different." He is Alexa's biggest fan and staunchest supporter. He makes lunch for her when they are together (even though she could do it herself) and he worries about her when she tries her independence. And he's shown that same care and concern for kids at school who are on the spectrum - he knows first hand how to look out for them. Though he doesn't mention it often, I know that he, like other siblings, thinks about the future and what his sister's life will be like as an adult. We're fortunate because we all assume Alexa will be able to live an independent life in a family unit of her own. But Ben will occasionally hint that he thinks about that time - "Yeah, I know I better be the one having the grandchildren because babies scare Alexa," or "Don't worry, I won't let you starve, Alexa." I know of several teenaged siblings of more profoundly impacted people who have spontaneously volunteered to their parents that they will become caregivers when the time comes. I can't quite imagine what that feeling is like - though I know many parents who make plans so that this conversation doesn't have to happen for real. It's interesting that one of Ben's friends is also a spectrum sibling (though she is an older sibling of two younger brothers on the spectrum) - they seem to have a bond that comes from sharing what that means.
But I don't want to paint these siblings as saints - they get frustrated too. Frustrated because they never get to try out the other back seat as it is permanently "claimed" by an Aspie who needs routine and sameness. Frustrated because they can't easily change the subject of conversations or spontaneously shift plans. Or because they can't eat at their favorite restaurant because the texture of the chicken nugget doesn't work for their sibling. Or can't watch what they want to on TV lest they disrupt the schedule. For those of you who watch The Big Bang Theory, imagine being Leonard. It's not always pretty, particularly when both Leonard and Sheldon (not a stated Aspie but a close approximation) are real life children. It's amazing to me that Ben (and many other spectrum siblings I've known) don't protest more than they do - probably because they don't know anything different.
What might be the most interesting aspect of spectrum siblings is one they likely never know about - the "control group" in the experiment of parenting. They serve as a yardstick of what "typical" looks like. Sometimes it is what lets us know there's an area of concern - particularly if the typical sibling is older, a parent is able to recognize that developmental milestones that aren't being met. Other times they reassure us that our parenting skills aren't so bad: "Gee, Ben just did that with ease, it can't be all my fault."
Being a spectrum sibling for sure impacts these kids, often in good ways, occasionally in less comfortable ones. But the amazing thing is how much they love their brothers and sisters, quirks and all. And that deserves a shout out.
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