While all three chapters from this week’s reading were incredibly interesting, I’d like to stop and take a closer look at chapter two, “The Boy Who Loves Green Straws”. Without trying to be too dramatic here, I have to say that many parts of the chapter were extremely heavy for me and elicited feelings of frustration and anger.
[As a sort of disclaimer, I’d like to note that I am not a parent or sibling of a child with ASD, and given that fact I feel as though I can’t make completely informed/nuanced judgments about how to handle such a situation. However, I do feel that I am able to form some criticisms in how ASD has been regarded and treated throughout the history of the diagnosis.]
Silberman begins chapter two light-heartedly, drawing us in to the lives of the Rosas’ and their son Leo. I’m not sure if it’s just me being a softy, but Leo wins me over instantly. Everyone in the family lovingly molds their lives around Leo’s in order to meet his needs. It is clear that they love Leo for who he is and would do anything for him. Leo became a sort of glue for the family, rather than the “pernicious myth” that autism would be more of a wedge:
“One of the most common misconceptions about autism is that it drives families apart. . . But helping Leo become the best Leo he can be has brought the family closer, binding them into a tight circle of love and support around their boy”(50).
This love for Leo is likely what prompted Mrs. Rosa to search desperately and exhaustively for a ‘cure’ for autism early in Leo’s life. What media had portrayed and what some parents had described about autism–for instance, what Scot Sea said about understanding why Delfin Bartolome had shot his son and then himself–made her physically ill (59). As a parent, she felt compelled to do everything she could to provide the best life possible for Leo . . . which is exactly what organizations such as DAN! take advantage of.
And this is precisely where my anger began. It isn’t directed at Shannon or families like hers; no, it’s directed at the insidious ideas that fuel the panicked search for treatment. Anti-vaccination blogs, chelation, strict and extreme dietary restrictions, holding therapy that disregards private space, and BioSET all clamored for Shannon’s money and time. Leo undergoes countless tests, and gradually the spark that endeared so many to him slowly leaves his eyes. The people in the white coats responsible for the tests hadn’t even spent time with Leo, or gotten to know him. What did they know about his passions? Nothing.
What does it even mean to defeat autism? Why not instead focus on teaching and enriching, instead of ‘defeating’ and destroying? Shannon eventually realizes that a ‘cure’ is not necessary for Leo; she can love him and provide a good life for him just as he is. The misinformation that gets spread about the supposed causes of autism just serve to stigmatize and ostracize those with ASD even further. Where is the justice for the families searching for answers, who only get met with a million different ways to waste money and emotional energy? For those who believe that autism have ‘stolen’ their son/daughter, I can only ask: how so? And for goodness sake, how is it better to have a sick child who never got vaccinated than a neurodivergent one is healthy and happy?!
I love that Silberman is writing about people like Leo and Cavendish, showing that a fulfilling life is easily had by those with ASD, and that neurotypicality isn’t the baseline requirement for a life worth living.