December 21, 2012 by whirlyjoy
This morning shortly after 3 a.m., Aida woke me up with the signature shrieks that have earned her her blog name. These are not unhappy shrieks, for the most part – in fact, overall Aida’s shrieking seems unrelated to mood or emotion, and is merely another way she greets the world through her autism haze, along with her hand flapping, head flipping, palm licking and, lately, eye squeezing. This last one is kind of cute: what she actually does is scrunch her whole face tight into a comical little expression, and then release it and grin and whip her head around for awhile. When it first appeared, though, I thought maybe she had something irritating her eye, like a floating lash or a stye, and kept trying to get past her flapping arms to take a closer look. Until enough time had gone by and nothing had gone swollen or oozy and I decided this was just a new Aida quirk.
Icky McGreenboots mentioned yesterday that the behavior specialists from her agency have been trying to settle on the right terms to use for these various “sensory driven” behaviors – those Aida has and the many, many others exhibited by people on the autism spectrum that basically serve no external purpose of communicating or manipulating their surroundings, but are purely a way to regulate their bodies as they contend with the excess and disorganized sensory information that their brains receive and are unable to process easily.
Since I’m the mom, I get to call these behaviors anything I want to. And I do: Aida’s quirks, that damned shrieking, “she’s having a wild day”, “total autism mode”. And, “oh my god please stop!” But when discussing Aida with the various professionals who work with her and are only familiar with her quirks to varying degrees, we need more suitable and specific words.
Part of the struggle for Icky and her colleagues is to keep up with the politically correct and scientifically accurate (to the best of our current understanding) language in this area. Many people call all of this stuff Aida does “stimming”, short for “self-stimulation” – a semi-official term that has always made me uncomfortable by calling up images of, let’s face it, compulsive onanism and sordid peep show environments.
Lots of people don’t know where the word “stimming” comes from, though, and it seems to lend itself to being used in a derogatory and dismissive way. “I can’t work with Aida because she spends all her time stimming” is a prime example, this from a school district speech therapist whose job was to work with children with autism, and who also reminded us at every IEP meeting that she herself had “a visual disability”, usually as a prelude to explaining why she wouldn’t be able to work on the things Aida needed to learn.
Our favorite at-home word comes from another school contact. When I first met Jeanette, a new one-to-one classroom aide who had just been hired for Aida a couple of years ago, she was bringing her out to me at pick-up after school, and greeted me with: “We’ve been stemming all day!” This led me to try to imagine what they had been doing in class (a gardening activity? some kind of craft project?), and when I asked her to clarify she said: “You know! Stemming! When she flaps all the time? It’s very distracting. Isn’t there a medication for that?”
I was speechless at the multiple layers of ignorance and impertinence she expressed in that very first exchange. Mimi re-dubbed her “Je-nitwit” and I ultimately spent the next thirteen months clutching at my Cruella stapler and making sure she got fired. But “stemming” stuck in our household and I still use it today – with a bit of a wry, sick smile.
The “stemmy” shrieking has been going on since Aida was a toddler; she can’t hear herself, of course – or maybe part of the appeal is that she can actually hear a little something when she’s that loud. She does know what “Shh!” and a finger to the lips means, and will mimic it back to us with a grin before letting loose another wild holler or two. It’s one of the main reasons I was desperate to get out of the apartments we’d lived in when the girls were little. The tall, skinny townhouse we’re in these days has no shared walls with neighbors (though I’m sure in the summer they can hear Aida’s song echo gigantically around the spaces between our homes); plus, Mimi’s room is now on a completely different floor so she can sleep through the bad nights.
If I’m keeping up with things correctly, the current mot du jour for Aida-style quirks is “self-regulatory behaviors”. Her autism means her brain and body are in a generally deregulated state, bombarded with too much sensory input and hampered by too little language to be able to make sense of it all. When she can focus on a repetitive behavior (or a bunch of them) it can be soothing and helpful to her – though it often has quite the opposite effect on those around her.
“Self-regulatory behavior” is a mouthful that doesn’t lend itself to easy shortcuts (“self-regging”?), but what I like about it is that it reminds us that what Aida’s doing is functional – in some way, for her – and rather than blaming her for it, our job is to help her find a different way to achieve that self-regulation. Preferably something socially acceptable and that doesn’t prevent her from accomplishing other things at the same time. Or at least something relatively quiet that doesn’t include biting herself.
I have never seen Aida as anything but a regular person (well, okay, an exceptionally wonderful and astoundingly intelligent person) who is trapped inside an autistic brain and nervous system – plus a hearing loss! – that makes nearly every interaction she has with the world an excruciating chore. Her severe social regression began before she even turned a year old, but I have never forgotten or lost touch with the vibrant, open, curious, happy baby she was, and I know without a shadow of a doubt that that is still who she is inside.
It’s very hard for the world in general to see her this way, to pick out her basic normality from the perplexing dog and pony show that autism puts on. And I think it gets harder for people as she gets older and more adult-looking to see past the strange and sometimes, frankly, frightening things she does, and get to know the Aida inside. To hear Aida’s real song.
One silver lining (yes, damn it, they can be there, just don’t ask me for them before I’m ready!) to our family’s experience is how Mimi is so naturally accepting of just about anything she might run into in the way of disabilities around her. I learned how deep this full acceptance can run when she was only six, and had spent a couple of weeks at a sign language summer camp offered at Children’s Hospital. As the final day of camp approached, with an ice cream party to finish things off, Mimi was very excited that I would get to meet her “best friend at camp”, Bella. I asked questions about her – six-year-old best friendships are remarkably short on detail – and learned that she was Mimi’s age, had long dark hair, loved Webkinz stuffies, and “she’s just fun”.
When the ice cream was served and I had made sure Aida was being supervised so she wouldn’t steal other kids’ food or wander off somewhere, Mimi grabbed my arm and dragged me through the crowds of people talking loudly with both voices and hands to introduce me to Bella. I was led up to a lovely little girl with long, dark hair, a humor-filled smile – and sitting in a slightly distorted position in a wheelchair. Mimi had not only failed to mention this detail, when I pointed this out to her later she was genuinely puzzled as to why I would bother – though she did share that Aida had tried more than once to climb into the chair on top of Bella for the fun of the ride.
This year Mimi rides the short bus to school with her sister. The door-to-door service is hard to beat, but I’d had some qualms about whether it was okay to expect her to ride as the only “typical” student in a bus of disabled kids. Shame on me. Mimi tells great stories of those rides, completely matter-of-fact and therefore beautiful and expressive of the kind of love that makes even a cynic like me stay hopeful about humanity. “Lawn Boy really likes when I sit next to him, so I usually do, but when he spits I tell him he has to stop or I’ll have to change seats.” “Unicorn Guy likes to make animal noises, so I give him animals to be during the bus ride. If you say ‘flamingo’ or some other animal he doesn’t know the noise for, he barks.”
Those of us who love Aida deeply get to use endearing, offbeat, comical terms to describe her (I’m still planning a comic strip series or children’s book about Little Weird Girl, a nickname she earned back before any of her diagnoses) – her family and the many wonderful people who’ve helped her learn and develop, at school and at home, and let her touch their hearts while they’re at it. I find it easier to handle grief and stress when I can laugh about things, so I only try to avoid this language and stick to the more technical and PC terms with people who don’t “get” her, and need the right words to see past her shell.
Sometimes it helps me to remember that many autistic “self-regulatory” quirks are really an extreme expression of some basic human behaviors. Lots of us have similar things going on that are just less obvious and less disruptive to our ability to live our lives – like preferring a certain coffee mug in the morning for the way it feels in your hands, or using music to shut out other distractions. My personal favorite “stem” is to rub up and down along the fingernail of my ring finger with my thumb – always on my right hand. I remember this as a constant source of contentment when I was a child, and still today I find myself lulled by the smooth, silky feel of that nail when I need to calm down and center myself.
Like when I’m lying in bed at three and four and five in the morning, trying to drift back into jagged bits of sleep in between being woken by shrill Aida shrieks. And whenever I need to pull away from the stress and fatigue she causes, to remember what Aida’s real song is.