Thursday, July 17, 2008

What Is Happening in Her Head?

The following is an excerpt from a diary I wrote on Daily Kos about a year ago, July 2007. Most of it still applies!


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.


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!"


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.


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.) [NOTE: this has changed; Joy is now down to 15 words or so, but clearly understands much, much more than she says.]

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 are the categories and criteria for the autism diagnosis.) 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!


Schnirelmann said...

We can calculate the number of different autism diagnoses by breaking into cases on the number of symptoms.

There is one way to have all twelve symptoms.

There are twelve ways to have eleven symptoms, one for each that is missing.

With ten symptoms, there are twelve ways to choose the first missing one, and eleven ways to choose the second missing one, for 132 possibilies, but we have to divide by two since they could have been chosen in either order, for only sixty-six different diagnoses.

With nine symptoms, there are (12*11*10) ways to choose missing symptoms divided by (1*2*3) different orders of choosing, but we have to remember to throw out four of these corresponding to the four cases where only one social symptom is present. That leaves 216 diagnoses with nine symptoms.

There are (12*11*10*9)/(1*2*3*4) ways to choose eight symptoms, but of these one has no communication symptom, one has no behavior symptom, and one has no social symptom. Also there are four ways to have exactly one social symptom times eight ways for one other symptoms to be absent, so thirty two more cases must be subtracted, leaving 460 eight-symptom diagnoses.

Seven symptoms can be chosen in 12!/(7!*5!) ways. For each category of symptoms, there is one way for it to be empty times eight distributions of the other symptoms, so we subtract these twenty-four cases. The social category can have exactly one symptom in four ways, times 8*7/2 ways for two of the other symptoms not to be chosen, thus another 112 combinations are not autism, leaving 656 diagnoses with seven symptoms.

Six symptoms (hang on, we're alomst there) can be chosen in 12!(6!*6!) ways. For each category of symptoms, there is one way for it to be empty times 8*7/2 ways for two of the other symptoms not to be chosen, ergo eighty-four non-daignoses. Also the social category can have exactly one symptom in four ways, times 8!/(5!*3!) ways to choose the other five symptoms, for another 224 almost-but-not-quite autism cases. That leaves 616 possible diagnoses with six symptoms.

In total there are 1 + 12 + 66 + 216 + 460 + 656 + 616 = 2027 different kinds of autism, or as we mathematicians like to say, "a lot".

JoyMama said...

Schnirelmann -- Whew... looks good to me! Thanks so much. (And if you've missed anything, I'm sure someone else will be along to pile on eventually...)

The extra dimension on top of the calculated combinations, of course, is that each symptom can range from relatively mild to quite extreme. But since there aren't fixed points identifying the severity of each symptom, that dimension will have to remain uncalculated.

schnirelmann said...

Oh, but if quantize the symptoms into categories, say mild, moderate, and severe, then each can take on three values for a total of 2027^3 = 8,328,393,683 kinds of autism.

schnirelmann said...

Oops, I pulled the trigger too quickly in my previous reply. Three levels of severity doesn't allow me to cube the number of diagnoses; the increase in the number of diagnoses is proportional to the number of symptoms. If there are twelve symptoms, there are 3^12 ways to allocate severity, whereas if there are eleven symptoms, there are only 3^11 ways, etc.

Thus the actual number should be 1*3^12 + 12*3^11 + 66*3^10 + 216*3^9 + 460*3^8 + 656*3^7 + 616*3^6 = 15,707,763 different diagnoses.

However, the exact number is not so important as the reassurance that comes from knowing that all of life's important questions can be answered mathematically.

JoyMama said...

Schnirelmann - I'm not sure that there's much I can add to that, except: