A few months ago I wrote a post about the link between literary fiction and increased empathy and better Theory of Mind. In case you missed it, here’s a link to that post and the research it was based upon.
I received a thoughtful email in response to the post, and the writer’s suggestion got me thinking about how the words we choose set a tone that can define a group of people. Specifically this mother urged me to consider how using the word “deficit” when talking about children with autism and empathy can lead people to assume “lack of.” She stated that she believes that children with autism suffer from the opposite of a lack of empathy; they instead have an overdose of it. I was struck by her response to my post, because I, as a mother, have seen this in my son with autism as well. An overwhelming empathy that spirals us through episodes of fraught emotions and emotional “flatness” that can only be explained as shutting down. We discussed how this could be explained through Theory of Mind – how our kids, and many others living with autism, have difficulty understanding that others think and feel differently than they do. Could this also result in an inability to separate themselves from emotionally sharing others’ experiences? We’ve definitely seen this happen over and over with our own kids.
So I was happy to see, a few weeks later, a new theory that supports this idea circling through social media channels. It seems to bolster what parents have observed in their own children with autism: overactive empathy, rather than a lack of it. Many individuals with autism report feeling so overcome by others’ emotions that they literally feel like they are experiencing those emotions too. When they walk in a room, they feel everyone’s emotions, but heightened. So why is the common conversation we have about individuals with autism couched in language that suggests they have a “deficit” in this area?
To me, it seems as simple as this cycle of feeling-too-much-and-shutting-or-melting-down being unreadable to those of us who do not have autism. A meltdown is seen as taking attention to one’s self, when what we expect an “empathetic” person to do is express concern, sympathy and warmth, while offering support. A shut-down is seen as callous and cold and the opposite of empathetic. But as is so often the case with autism, we fail to grasp what is going on. We struggle to bridge the gap between what is really being experienced by our children and what we perceive their experience to be.
My son has always shown a remarkable sensitivity. Gently approaching those in need of comfort, giving freely of his smile and attention. He is warm and loving, yet very few people see this because he struggles with showing these emotions in a socially acceptable way. Yet saying he lacks empathy, sorely misses the mark. What he truly lacks is the tools for communicating his feelings in a way WE would expect. As a mother, I want him to learn this, so his life is easier, and the people he meets will come to know and appreciate him. But the autism advocate in me thinks it is us – the socially adept, super communicators – who should learn how to communicate with him. Because after all, we’re supposedly the experts in this.
And I’m struck again by how much, as a parent, living with autism forces me to rethink and redefine everything I “know.” It’s encouraging to see professionals in the field, shifting their perspective and instead of following a linear path to forgone conclusions, circling back to explore, deeply, what we might be missing or misunderstanding.
Looking further into this new theory is worthwhile. The authors posit that all symptoms of autism can be tied to this “intense world hypothesis,” including language impairments and social problems. Once your perspective shifts, it’s easy for you to start seeing your child and their way of being in the world differently too.