Echoing through my mind lately has been a line from the rock opera Tommy by The Who, a story in which the main character spends most of his childhood and youth unable to hear or speak or see. The line is sung by the character of Mrs. Walker, Tommy's mother:
What is happening in his head?
Oooooh, I wish I knew, I wish I knew.
I don't have a "deaf, dumb and blind" son, but I do have a 3-year-old daughter who has both autism and epilepsy, in context of a rare disorder known as Linear Nevus Sebaceous Syndrome. It's pretty clear that her mind is wired differently than mine, and she is both too young and too communication-delayed to be able to describe to me what it's like to be her.
Below the fold, a little bit about what I do and don't know about what might be happening in her head, what I wish I knew, and why it matters.
Not long after we received the autism diagnosis, I attended a program called "Autism 101" that was sponsored by our local Autism Society chapter. One of the presenters was an autism consultant who has autism herself, a professionally successful woman with a master's degree who wasn't diagnosed with autism until adulthood.
As part of the program, the attendees went around the circle and spoke a little bit about why we were there. I introduced myself and reflected on my daughter and her recent autism diagnosis, and what the diagnosis helped us explain and what it made even more confusing. One of the confusing things for me, I shared, was how to deal with boundary-testing: negative behaviors like swiping things off counters and flinging them, and dashing away at the least opportunity, that she never pulled at daycare but only with her parents. Such "trying it on" behavior felt like something a "normal" kid would pull, and yet we were having no success with setting those boundaries and getting her to respect them.
The autism consultant, I'll call her E., rocked me on my heels with her flat response. "I feel sorry for her," she said.
Ouch. Try being told in front of a public forum that the local expert feels sorry for your child due to your parenting!
And then E. told this story.
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E. remembered very clearly one occasion where, as a child, she was being cared for by an adult other than her parents. One of the things that she did that day was that she kicked her caregiver in the legs, a good hard punt. Her caregiver was, quite naturally, furious. "No! Don't kick, you don't kick people! Don't kick! Now, what did I just tell you?"
"Don't kick," E. repeated promptly.
And then she smiled up at her caregiver and gave another good solid kick to the legs.
You can imagine what the caregiver said when E's parents returned. "She knew EXACTLY what she was doing. She knew she wasn't supposed to kick, she even said 'Don't kick,' then she smiled up in my face and hauled off and KICKED ME AGAIN!"
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What was happening in her head?
E. couldn't articulate it then, but these many years later, there's a lot she has to tell about the incident.
First, it felt GOOD to kick. Many (most, all?) people with autism have a sensory component to their condition, in which their sensory systems are differently wired. Sometimes they become overwhelmed by too many noises or too much to see and can't sort out what's important. Sometimes they can't stand particular kinds of touch. Sometimes, on the other hand, they crave intense touch or pressure, and literally need that kind of stimulation to be able to focus. Kicking creates pressure. It felt good.
Second, E's repetition of "Don't kick" didn't mean what the caregiver thought it meant. Many people with autism have echolalia, a twist on communication which allows them to repeat quite precisely what they hear, either immediately or some time later, without necessarily understanding it. People with autism can produce strange results on speech evaluations; neurotypical language-learners generally understand more than they say, but with autism and echolalia, it's entirely possible to say more than one understands. So, when E. repeated "Don't kick," she didn't actually "get" it.
Third, people with autism (many, most, all?) tend to think in pictures. The author and livestock handling equipment designer Temple Grandin, who also has autism, is perhaps the most famous voice on this subject. In fact, she wrote an autobiographical work called Thinking in Pictures: My Life With Autism. To Grandin, words are like a second language. Pictures are the primary means that she experiences what is happening in her head. E. thinks in pictures as well. And when you think in pictures, E. explained, the words that make the most sense are the words that can most easily be expressed in pictures. "Kick," for example, is a nice easy one. "Don't," on the other hand, is not. (Quick, everybody, think up a picture in your mind of what "don't" looks like...) So when she heard and said "Don't kick," the important part of the instruction was the "kick." And kicking felt so good, and how nice it was to be invited to kick again! So she kicked.
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I'll add yet a fourth aspect to the frame of the story, and that is that many (most, all?) people with autism have challenges interpreting social situations. So when E. publicly declared her sympathy for my poor misunderstood and mis-parented child, I had to take a huge deep breath and remind myself that from her autistic context, perhaps she was not able to project how her brutally-honest words might make a neurotypical mama feel.
What is happening in her head?
There are several parts of E's story that make a great deal of sense in my daughter's context. My daughter definitely has sensory issues, and is in general a sensory-seeker. Running feels good, and jumping, and crashing into things, and splashing in water, and climbing, and teetering on the edges of things -- one of her therapists suggested that the teetering helps her "feel" where her body is in space. She loves activities that provide deep pressure, and she seems to be more focused immediately after such experiences. My daughter also keeps testing higher for expressive language than for receptive language, which puzzled the heck out of us until the autism diagnosis. Not that she repeats long strings of things clearly or accurately, but she does say things that we're not sure she understands, including the word "no." (Her expressive vocabulary, just for context, is about 80 individual words, mostly nouns, not used in combination, and mostly poorly articulated.)
I'm still floundering around somewhat with the idea that all people with autism necessarily think in pictures. Autism is such a combination-platter diagnosis. There's no blood test or anything that definitive. Instead it's a clinical judgment call, based on psychological criteria in the DSM IV. There are three categories of criteria for autism: social, communication, and behaviors/interests. Each category has four criteria, which one might call symptoms. To receive a diagnosis of autism, one must fit two of the social symptoms, at least one each of the communication and behaviors symptoms, and a total of six symptoms across the board. (Here's a nice examination of the categories and criteria in lay terms.) I don't have the mathematical chops to figure out how many potential combinations that is, but it's pretty clear that people with different levels of different combinations of different symptoms can "present" very, very differently and still receive the same diagnosis. Neither I nor my husband nor any of my daughter's therapists were expecting a diagnosis of autism when we took her to the developmentalist who diagnosed her. Our daughter is affectionate, loves peek-a-boo games, has a sense of humor, and just didn't fit what little we knew of autism. And yet the doctor pegged her for nine of the twelve criteria. The combinations can be that subtle.
What generalizations are fair to make under those circumstances? Ooo, I wish I knew!
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My what is happening in her head questions have another dimension too, and that is my daughter's epilepsy. We have quite a lot of medical information about her brain in particuar, related to that part of her condition. We've got a bunch of pictures of the innards of her head from a CT scan and an MRI (both normal). There's oodles of imagery of electrical pulses from 3 EEGs, one of them synched up to video images (documenting lots of seizure activity, both visible and sub-clinical). And what all does that tell me about what she experiences? Not a whole heck of a lot. Working closely with her excellent pediatric neurologist, we've been trying various combinations of medication and diet for almost a year. She's still averaging about two substantial seizures a day, in which she goes suddenly stiff, topples over if she's not already sitting or lying down, stops breathing for 5-10 seconds, and then slowly returns to us over the course of about a minute. After a seizure like that, she then becomes whiny, clingy, cranky, very hard to comfort for half an hour or more. But she can't tell us what it feels like or what would help. Surely she's disoriented. But does she also have a headache? Does her body feel funny? What does it do to her already-off-kilter sensory systems? Ooo, I wish I knew!
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So what do I, as a parent, do, knowing that my child is wired differently but not having the benefit of her being able to describe what is happening in her head?
Here are my current top takeaways.
- We've got to be REALLY careful about making assumptions and knee-jerk emotional reactions.
- Paying close attention matters.
- Hearing from other people who have experience with or who overlap with her label-boxes (epilepsy, autism) is important to us. We try to apply what we learn, while recognizing that others' experiences are not necessarily definitive for us.
- I need to remember to enjoy my daughter, and enter joyfully into her world as best I can.
Here's an example of how I'm trying to apply these.
One very frustrating situation we've had is that our daughter was flinging her plate off the table at meals. She's strong, and she's fast, and when there's stuff like yogurt or applesauce on that plate, the mess can be extreme. "Bah-BOO!" (kaboom) she'd yell as she flung. Or, "NO!"
Knee-jerk reaction would be to holler, perhaps berate, perhaps some additional form of negative consequence (after all, she knows that it's a "no", right?) Far more effective, we eventually learned, was to analyze what she might be getting out of the action, and to strategize in advance about how to react. We decided that her reasons for the action might include:
- Feels good to throw
- Communication - is she done with the meal?
- Enjoys getting the big parental reaction
We were fortunate to have one of our daughter's therapists to help us work this out. First and hardest for us in our strategy was to remove the parental reaction. If she succeeded in flinging, we were to totally ignore it. No comment, no jump, no nothing. Clean it up later so she doesn't even get the benefit of that reaction.
For the communication bit, we had to commit to watching her even more closely. When she started slowing down on her eating, we'd start making an extra effort to communicate about each bite. Maybe we'd put a hand on the plate for extra security. Then when she starts acting reluctant, start suggesting that she might be "all done". If we can get the word or sign out of her instead of a fling, that's a major success. We make sure to give a huge positive reaction for such a successful announcement, to rejoice with her and make it a happy occasion. Maybe a nice big hug, to give her some feel-good sensory pressure.
The flinging issues have subsided dramatically, we're getting a lot more interaction with her during the course of the meal now that we're paying more attention, and we're enjoying her mealtime company a whole lot more.
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A couple of points in closing, ideas that I'm still mulling over.
There's a lot of this that applies much more broadly than just to parenting children who are "wired differently."
For example, thoughtfully refusing to act on the emotional negative knee-jerk when it feels like someone is deliberately trying to push your buttons. That works with neurotypical kids too. Heck, it works with adults! Take away the unhelpful assumption that it's button-pushing or non-compliance that's going on (maybe even when you're pretty sure it IS!), and try to figure out what your most constructive response-option would be.
Or, try this one on for size: We NEVER know exactly what is going on in someone else's head, no matter how they're wired. All we can do is observe, think, respond, and try to stay away from those darned unhelpful assumptions.
And, finally, all my musings in this diary reflect where I am right now. I'm very new to the whole realm of having a child with special needs -- she turned three in May, and we've only had the autism diagnosis since Christmas. Trying to learn as much as I can, do the right thing by her, love her like crazy, and simultaneously be the best parent I can be to my neurotypical five-year-old as well! I don't expect to be at the same place a year from now, or perhaps even in a month. And it's the quest for learning, and the dialog, and the keeping my eyes open and being willing to learn from everyone (from her in particular), that will help us the most. Thanks in advance for any and all contributions you might make to the process, and thank you for your time in reading this!