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 tshirt 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.