While I certainly do not presume to speak for the experience, there is, among African-Americans, a concept of “passing”. There was even a legal definition of being “black”- if you were 1/8 black, or your great-grandparent was African-American, you were considered “black” yourself- even if you had blonde hair and blue eyes. The term was an “octoroon” and under Jim Crow laws, they were denied the right to vote, marry a white person, etc. I mention this simply because there was some significant reason to “pass”. In the days before computers, some families would move, and claim “white” heritage in their new place. Often, they prayed that no one who knew them from “before” would recognize them or come to visit, and so they were cut off from their past, and often, too afraid of being caught to fully become “white”. They were of no culture, of no label, not fully one or the other. They were “passing”.
I mention this, not to discuss racial issues, but because Elizabeth is very close to “passing” as a typical child. With tremendous therapy when she was 2, 3, 4 and lots of caring teachers and help from us when she was 5 and 6, she looks “quirky” now- most of the time. Autism hovers around her, but is rarely invoked. We don’t tell her teachers until after they get to know her; we never mention it to friends or their parents, and we discuss it lightly with her. The term “autism” is so loaded, that we would rather people get to know Elizabeth before they see her as “that autistic girl”.
Ray’s Tourette’s is obvious. Not severe, but enough of an issue that it warrents interference from me- a plea to his teachers, explanations to friends, and ongoing conversation with him. Elizabeth? Not so much. To my great relief and amazement, most of the time she’s just a little extra sensitive, a half a step behind socially, stimming in socially acceptable manners, fantastic in math and less so in language. She’s come a long way. We are deeply grateful that her autism is so rarely a “problem” and has gotten to the point where she CAN “pass”- we know so many children who cannot.
But not this weekend. This weekend, she is caught in the tendrils of autism that are highjacking her reactions. She’s screechy, singsongy, weepy, and socially off. And of course, this is the weekend that her bestest friend, Emily, who does not “know”, is spending the whole weekend because her family is out of town and the girls didn’t want to be separated for TWO WHOLE DAYS!!! (as said in dramatic Elizabeth fashion). Emily knows that Elizabeth is “odd”, but she’s a very kind child who loves animals and babies and is very helpful to most children. She’s an ideal bestest friend. We call her our “bonus daughter” because she and Elizabeth spend so much time together. But today, even she is taken aback at Elizabeth’s behavior and reactions.
There are lots of reasons why autism is rearing its ugly head- it’s the weekend before Spring Break, the weekend before we leave for Louisville, a major change in routine with Emily spending not one, but two nights. An awful lot for a little girl to absorb. She’s tired because of a soccer game today. The weather is terrible- windy and chilly and irritating. A restaurant we enjoy going to burned down this morning in rather spectacular fashion. We didn’t see it directly, just the blackened, crumbled aftermath, but it was rather shocking. There is an awful lot going on. I’m feeling a bit highjacked myself. And my heart breaks just a little when I watch her try to deal with it all.
In the car this morning on the way to the soccer games, Emily got “that” expression on her face- that “Oh my GOD, what IS SHE DOING?” look when Elizabeth absent-mindedly began stroking and tracing the soccer number on Ray’s jersey that he was wearing. Ray protested that she was TOUCHING HIM, and Elizabeth scooched down in her seat and started to chew on her hair, something she hasn’t done in years. I covered for her- about how the texture of the letter was really different and soft and nice to touch. Let’s remember to keep our hands to ourselves, shall we? I turned it into a typical sibling issue. I think Emily bought it and we moved on. Until this afternoon.
Elizabeth didn’t want to do anything except swing. She didn’t want to walk Emily’s dog; she didn’t want to play with another friend; she didn’t want to draw. She only wanted to swing. Emily looked bored after a while. I brought them in early for dinner. I was trying to work on a project that is due before we leave, so I couldn’t play Activities Director as much as I would have liked. Normally, I don’t have to. I have celebrated letting her go- watching her play on the fringes of groups- not wildly popular, but not excluded, either. But not today.
Elizabeth spent much of the evening arranging her closet to sleep in it. She took all of her toys out of her toy chest, and put in her pillows and blankets. Emily was invited to sleep in there with her. Emily, being a typical child who doesn’t want to sleep completely crunched in a 3 foot space, looked at it, and said “No, that’s ok”, and looked bored as Elizabeth proceeded to hum as she put toys on the bed and more and more covers in the toy box. There are pink and purple blankets crammed into a wooden chest and there Elizabeth sleeps now, her knees drawn up to her chin. Emily is sprawled out on the trundle bed, alone on her sleepover.
And there is still tomorrow to get through before Emily’s family comes back.
I think the girls need a break from each other- Elizabeth needs to find her stability again, and Emily needs to have some time to forget this “other” person who has appeared where her friend has been.
The other day I had a conversation with a friend about whether my daughter “has” autism, or if she is autistic. Speaking only for my child- she “has” autism- and is only a little bit “autistic”. She has a dramatic personality- she’s known as a “drama queen” because of her exaggerated reactions. She’s intense. She’s analytical. She’s really, really good in math and can focus extraordinarily well. Perhaps that’s “autistic”, but it’s so much a part of who she is, that I don’t label it anymore. It’s just Elizabeth.
However, we are stalked by “autism”. Autism is something that is there, waiting- waiting for tiredness, waiting for a change in routine, waiting for pressure, waiting for an opportunity to throw things off. It appears, takes her hostage and we have to wait it out. We have to let her soothe herself- crawl into a tight ball and sleep it off. We have to talk her through it and remind her of consequences- “We don’t touch other people.” I envision “autism” as this gabbling, wizened creature, a bit like Gollum from Lord of the Ring, muttering, hiding in the darkness, and jumping out at us every now and then.
Most of the time, she can “pass”… but not today. Today, we share the house with Autism. My Precioussssssss….