Sibling Perceptions

This week I’d like to share a blog that, quite frankly, has been bothering me. Rather than post it to our Facebook page, I’ve decided to include it here first, because I’m interested in your feedback. I will refrain from mine until the end after you’ve had time to digest it.

The Myth of the Martyr “Autism Sibling”
November 18, 2015/by Sophie’s Trains/Respectfully Connected
“We have often written about the idea of the martyr parent or alternatively, the ‘warrior parent’- usually referring to a parent that launches a crusade against their child’s disability while painting themselves as somehow special or better than a typical parent. This type of parent will proudly wear a t-shirt announcing their child’s disability, often proclaiming how their child is a ‘superhero’, while at the same time openly mourning their fate.
If there are other children present in that family, especially typically developing children, often they are pulled into the cause by natural extension. If they are growing up with the paradigm of the tragedy of disability (whatever that disability might be, but in this case autism), they will likely quite early on see their sibling as a victim, ‘poor’ and ‘special’.
These typical siblings will often achieve hero status just by being related to someone who is autistic. They will be praised as brave, compassionate and unselfish. Often it will be mentioned how much they are ‘missing out on’ just because their sibling is autistic.
Reading popular and widely shared articles about disability issues, it is quite common to see these stories perpetuated. Part of inspiration porn, they make us feel good, in the same vein as the stories about a football team sharing a meal with an autistic teen give us the fuzzies. ‘My daughter the hero, her brother has sensory issues and doesn’t like Disneyland and she still made him a card’ types of articles get lots of shares with praise being heaped upon the disadvantaged sibling who has gotten a lousy lot in life and yet managed to become a great person despite of it.
This idea that an autistic child’s influence over their siblings is that of an obstacle they must learn to overcome in order to better themselves is an unfair concept. First of all, it is deeply rooted in the prejudice against disability in our society, and the opinion that one type of child is ‘better’ than another. It sets the autistic child apart by painting him as the scapegoat anytime something doesn’t work out in the other child’s life.
How can we reframe our thinking and thus shape the perception of disability in our young children’s minds?
Avoid speaking of autism in a perpetually negative light. This does not mean not mentioning the difficulties associated with it. I often tell my kids that we all have challenges to overcome and while they might look vastly different, they are all valid. So, while one child might be navigating middle school and one might be perfecting her gymnastics and one might be working on potty training while one is working on using her communication device, none of these goals are given more value. Our journeys are different but we are all moving forward at our own pace.
Arrange your lifestyle so that the child who isn’t able to participate in an activity isn’t blamed for the rest of the family not doing it. In our family of six, it is not only Sophie who sometimes isn’t well suited for a certain outing or event. The age range is wide, and so are interests. Some children are athletic, some more academic, some prefer a walk in the park and some love going to the pool. It doesn’t mean we have to travel in a herd from event to event which not everyone enjoys or can tolerate.
Perhaps some things can be done with one parent and a few children, while the other parent does something else with the remaining kids. Perhaps a grandparent or a friend can stay with some kids while the rest attend an activity. If all else fails maybe a child can be pulled out of school once in a while for a rare one-on-one date with the parent. I can honestly say that I don’t think we’ve ever told our kids in 5 years that we can’t do something they want to do because Sophie won’t like it. They might not be able to do it immediately after asking, but we find a way to make it work in the near future.
Of course I feel touched when I see their sweet interactions. It isn’t however because I think that interacting with their sister is something praise-worthy just because she is nonverbal or autistic. I just like to see the kids being kind to each other in general, whether it’s the two older ones playing a game without bickering, or them grabbing a snack for the little ones, or playing with their younger brother in his room.
Let’s not give our kids the message that there’s a difference between being nice to a typical person and a disabled person. That the latter makes them somehow a ‘hero’ while the first is expected as the norm. Teach them why their sibling is different and help them to understand them better. Structure your life in a way that everyone is equally important and no one is put on a pedestal. Make sure the autistic child can contribute meaningfully to the family unit.
This all begins with self-reflection and confronting our internalized prejudices against disability. Remember for every ‘hero’ sibling who is shared and praised, there is the other sibling somewhere getting the message they are a nuisance because of their autism.”

Okay, Carolyn here again. While I understand what the author is trying to say, I have to admit that something about it struck me the wrong way. Maybe because one family might fairly easily be able to accommodate all their children somewhat equally whereas other families are dealing with such severe reactions and behaviors that this is not possible. I don’t have to worry about a sibling problem since my son is an only child, but I feel for those families that do and recognize that their reality may not be mine.

The reason they have sibling support groups is so that the brothers and sisters of kids on the spectrum can say in group what they may not be telling their parents, so parents aren’t always aware of what their other children are internalizing. In many cases, growing up with a brother or sister with autism is quite challenging, to say the least, and I think we need to acknowledge that reality as well.

I completely agree that we shouldn’t make autism that black cloud that hangs over the family but to negate the challenges it presents to the person with autism, their siblings, and their parents is somehow dishonest.  It would be more honest, I believe, to admit that every family dynamic is different and some families struggle more than others because of this diagnosis.  We don’t all have to be Pollyanna to love our kids…all our kids!

I’m curious as to what you think, so please feel free to post any comments, whether you agree or disagree.  I may be completely off base here (it wouldn’t be the first time!).

Peace,

Carolyn

Comments

    Tammy Vice | March 3, 2016 at 11:33 pm

    Agreed Carolyn, There are challenges that I believe need to be acknowledged. It’s not the normal “everyone’s at a different age range, with different interests.”

    I hope I can say this in a way that doesn’t get me in trouble. Probably not. 😉 I love my daughter on the spectrum with all my heart. I think she’s amazing, and part of that is due to her autism. However, autism and OCD also attribute to behaviors that cause her extreme anxiety and unrest at times. I do NOT love this part of her autism. It has profoundly affected her, and every member of our family. On really hard days, I remember telling my older daughter, “lets go out in the backyard and scream together, This Isn’t Fair!” I think we’ve grown stronger as a family because we’re honest and open about it with each other, acknowledging the good, the bad, and the ugly.

    No heroes here. Just know what’s worked for us. Respecting that every family has a unique journey. 😉

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