Here I sit, taping spiky sycamore tree seed pods to a stick, the top of which has been adorned with a dirt-stained weatherproof velvet bow. All items scavenged by J on our just-returned-from twilight walk. “Do you know? I am going to make a Christmas tree! It will be for me!” Jonah proclaimed as he gathered. I silently responded, “No, Mommy or Daddy is going to make a Christmas tree.” And here I sit. No J. No G. No John. Brave man that he is, Dr. Estes took them to see the Mall Santa. “I will tell him I want a mummy with a sarcophagus!” Jonah told me as we shoved him into his coat. Do you think Mall Santa will know what a sarcophagus is? Let’s hope.
Christmas. Vacation. Those two words don’t really belong together. “Christmas break” might be worse. Here I will interject a Mall Santa update, courtesy of John:
5:45 p.m. “Santa is at supper. Jonah thinks he [Santa] loves pizza and gummies (he will tell him that they are bad for his teeth).”
Yeah, so we’re all a little out of whack around here. Gabriel’s not used to having Jonah around all day. Loves it, but he gets in the way of J’s nebulous projects and it’s a wonder his little hands haven’t been slammed in Jonah’s bedroom door. I should start counting how many times I hear J say, “No Thank You!” Door slam. No, maybe I shouldn’t. The weather’s been dreary rainy, so there’s no digging outside and no snow to brighten things up a touch.
I often struggle to discern the source of Jonah’s “the-world-is-entirely-about-me-and-I-must-get-what-I-want-the-moment-that-I-want-it” behavior. Simon Baren-Cohen developed a theory called mind-blindness, which refers to an autistic’s inability to see things from another’s perspective. Call it lack of empathy if you will (and many people do).
This is a particular snag we came across repeatedly in the first few years of Jonah’s life when various people told us we should get him evaluated for autism. We’d go down the checklist, and when we came to the “lack of empathy” box we wouldn’t know what to answer. Even as a toddler, you got the sense that Jonah truly cared about people, though he may not express this in a typical way. He’s terribly interested in people, and he’s incredibly curious about lots of things in his environment. His natural response is to ask a bazillion questions (maybe best described as avalanche questioning—his questions coming harder and faster than we could possibly ever answer them).
But there’s still the difficult behavior to deal with. The meltdowns when Jonah doesn’t get his way. The tears. The screaming. The inflexibility. I appreciate this challenge to Baren-Cohen’s mind-blindness theory (posed to Professor Baren-Cohen himself) by Karen McLaren:
I have a question about the hypothesis that people on the Autism Spectrum lack empathy. I went into a job supporting college-aged Spectrum students, and I read everything I could get my hands on—most of which follows your hypothesis about low empathy and incomplete or missing theory of mind. From all these books, I thought I knew the kind of people I’d meet, but I didn’t see a lack of empathy—rather, I saw people who were often overwhelmed by incoming stimuli and who had a very hard time organizing and understanding emotional cues. I’ve since worked with many Spectrum people, and I really think the theory is leading the data-gathering.
Is it possible that people on the autism spectrum actually have a normal range of capacity for empathy, but are often overwhelmed and unable to organize incoming emotional and social stimuli?
What I saw was that labeling Autism Spectrum people as unempathic obscures deeper inquiry. Sadly, that label also helps people treat Spectrum folks as aliens. The lack of understanding I saw “neurotypicals” show for Spectrum people made me ask: “Just who is the unempathetic person here?”
This is incredibly helpful to me. I don’t necessarily see Jonah as overwhelmed. He’s innately exuberant about life and intensely seeks out sensory stimulation to the point that it’s sometimes hard to know when he’s had enough and when he’s working himself into a frenzy. I do see him unable to organize emotional and social stimuli. Especially when he’s tired or hungry, or when we’re in a new environment or situation. So in response to McLaren’s question, “Just who is the unempathetic person here?”—well, sometimes I’d have to say that’d be me.
To give myself a little bit of a break, I am still grasping to understand so much about Jonah, and about autism. And I’m trying to assimilate what I’m learning with my responsibility as a parent and mother, which is a ragbag of how I’ve been parented myself, my own intuitions about parenting, and the particular child God deemed fit to grace us with.
Speaking of…that’s “Butterfly” on the left (I think he and John used components of almost every costume J possesses) and his sidekick, “Little Chef” on the right. I tried to get them in a photo together, but one or the other always came out fuzzy.