by Devon Alley
Today’s Thinking Person’s Guide to Autism post makes some very important points about autism in the media in reference to abuse and empathy. It’s really chilling, the misconceptions our mainstream media tends to promote as well as the language that is used surrounding these stories. It’s terrible enough that incidents such as the ones that Zoe discusses in this article are so prevalent that two of them have been prominently featured as mainstream stories in the past week alone, but it’s even more disturbing that these stories seem determined to defend the viewpoint of the parents.
This post also enlightened me to the Autism Now series, and that Robert MacNeil described autistic people as lacking empathy — and that no autistic people were interviewed for this news series — an issue which Rachel Cohen-Rottenberg addresses quite powerfully in an open letter on her website.
Before I go off on this rant, let me add a disclaimer — I’m not an expert, I can only speak from my own personal experience, and I understand that autism is a spectrum disorder, which means that it affects different people in very different ways. Therefore, there may be other people who have had very different experiences than me.
But, personally — I won’t let anyone tell me that my daughter lacks empathy. Does she lack an understanding of the logical progression of social behaviors that may lead to very specific reactions from people? (i.e. Does she fail to understand that saying something rude might hurt someone’s feelings?) This is definitely a struggle, and something we’ve been working on. A.’s new tactic for dealing with this specific issue, in fact, is prefacing anything she suspects might be construed as inappropriate or rude with “I don’t mean be rude, but….” Which, as far as I can tell, suggests a big leap of awareness in this whole “empathy” social construct that the greater world largely seems to believe my daughter, because she autistic, would not be able to grasp at all.
And outside of the social structures of empathy is the very real fact that my daughter is distressed when I’m distressed, that she wants to make me happy, and that she wants everyone to be happy with her at all times. I remember even before she was completely verbal, if I was scowling or unhappy, she would sit on my lap and push the corners of my mouth up into a smile. When she listens to sad songs, tears start streaming down her cheeks. If something terrible or frightening happens to a character in a film she’s really into, she can hardly stand to watch unless she knows everything will be okay for that character. If a peer at school seems discouraged or upset, she’ll often try to do something small to comfort them.
Is it hard for her to put herself into someone else shoes? Yes, we do still have to prompt her on this sometimes. “How would you feel if we criticized your music? Well, can you imagine what it might be like for us when you criticize our music?” But I think this is a very different thing from generalized empathy and the ability to be concerned for other people. I don’t know exactly how my daughter’s brain works, but I know it is wired very differently from me, and that learning the very complex universe of social constructs has developed in a very different pattern than my own. But I know she shows concern and worry for other people and their feelings, and the disconnect is always in understanding that a specific set of actions or words might hurt someone as opposed to simply not caring if that person would be hurt.
For me, that’s the difference between true empathy and the struggle that autistic people often have with socially accepted displays of empathy. A. may not be able to understand that complaining loudly about her great-grandmother’s house being BORING will likely hurt her great-grandmother’s feelings, but if I’m crying or upset, A. is beside herself with trying to figure out why or what she can do to help, and often she gets upset, too. I’m sorry, Mr. MacNeil. My daughter may tell me that I’m boring or that my music is lame or any number of honest opinions that she has about my life and whatever is going on at the moment, and she may not want to look me in the eyes while she’s doing it, but she is well aware of my existence and my humanity, and there is a beautiful and loving child-parent connection, there — even if it doesn’t look exactly like other child-parent connections, and therefore may be hard for others to recognize.
Please listen, world. My daughter has autism. This does not mean she is an unfeeling robot. This does not mean she has no empathy. It means that her brain works differently, that she acts and reacts differently, and that she has to learn — through social stories, through memorization, through structured teaching methods — how to communicate and navigate complicated social structures, and that until she learns these things, she may sometimes come off as blunt, rude, and inconsiderate. But she feels, she understands, she is a participant in this world with the rest of you, and she needs your acceptance and understanding much more than I, as her parent, ever will. Parenting a child with autism is nowhere near as stressful and overwhelming as being a person with autism.
Really, Zoe says it best: “Every day, autistic people are being murdered and abused by people who are supposed to provide them with love and care. And every day, people tell each other that autistic people are the ones who lack empathy, never pointing out that often, it is neurotypical people who do not have empathy for us.”
If we’re looking to promote Autism Awareness throughout April, the first thing we need to do is listen to — and have empathy for — the very autistic people we’re claiming to raise awareness for.
About the Author: Devon Alley is the mother of a child diagnosed with high-functioning autism. She blogs at From Inside the Puzzle: Raising a Child with Autism. This piece was first published on her blog on April 23, 2011 and appears here by permission.