Wednesday, May 4, 2011

Everything and Nothing about Autism

Everything I need to know I learned in Applied Behavioral Analysis.
I just finished watching Temple Grandin, and HBO movie from last year.  Temple Grandin is a female professor at Colorado State University who speaks on and studies animal handling.  She is also autistic.  I can't claim to have done a lot of research on her, and I have not even read her books, although I'd like to.  I can't tell you that learning about Temple Grandin or how her mind works will help you understand an autistic person.  It was a good movie though.

My little girl is autistic, and she is everything and nothing like Temple Grandin, or how Temple Grandin was portrayed in the movie.  There was one point in the movie where it showed Temple being very scared of an automatic sliding door at a dollar store; IC is afraid of the doors like that on trains and elevators.  She mostly seems scared that either the door will compress someone, or that the door will close with someone, like herself or me, on the opposite side of her.  Temple was shown eating only yogurt and jello.  IC eats probably about 10-15 different foods, all of which must be prepared to her exact specifications. But there are huge differences too.  Temple has stated, "the part of other people that has emotional relationships is not a part of me" (Wikipedia article, see above).  IC is very invested in her emotional relationships, and has even stated that she wants to be a mother when she grows up.  In fact emotional relationships seem to be a major interest for her, but she looks at them differently.  She likes to analyze them by saying, "Daddy is your husband.  You are Daddy's wife.  Daddy is my daddy, and DJ's Daddy, and HT's Daddy.  I have two brothers.  I do not have a sister..." and on and on.  Temple describes her mind by saying that she thinks in pictures, and was portrayed in the movie as having the ability to take a mental photograph of whatever she is looking at and remember it indefinitely.  I theorize that IC can perform this mental photography as well, but as of yet she has not shown the connection with math or engineering.  She is more likely to connect her "mental photograph" memory to words.  For example, there is a bulletin board in her school classroom with each student's name and birthday written on a cut-out shape.  IC can reproduce this bulletin board at will, and can list every birthday in her class, as well as her family, in order by month.  She can do this as fast as she can write them down; she doesn't have to think about it.  She can tell you the day and date of any event she deems important for roughly the last two years, such as what day of the week someone's birthday fell on, or when was the last time it rained.  Yet she struggles immensely with trying to understand what other people might be thinking.  If she says something to you, and you don't look at her or respond to her, she doesn't know that you didn't hear her; usually she doesn't even notice your lack of response, or if she does, she doesn't know what it means.

Now I'm going to tell you that I have no idea if anything of what I just wrote about IC is true.  There are times where I must advocate and argue and get angry so that my daughter can get the help she needs, and the truth is that I'm never completely sure what she needs; it's usually just my best guess.  It would be for anyone, with any child.  Think for a minute about how you interact with someone and what you're thinking while you're doing it.  You're thinking about what they're thinking, how they're responding to what you're saying or doing, and you're determining how to continue with the interaction based on that.  You're in effect comparing your perspective  with theirs, and that is how you know them- only through your own lens.  I think my lens isn't very successful at zooming in on my daughter.  In fact, I wonder if my neurology will ever allow me to understand her in a way that is meaningful to her.  And then I wonder if being understood is even important to her.  After all, I only assume that it is because it's important to me.

The truth is that my neurotypical brain can not understand her autistic brain.  The issue is much more complex than the problem of neurotypical v. autistic thinking.  As I said, my daughter is everything and nothing like Temple Grandin, yet they share the same diagnosis.  She is everything and nothing like Mordecai, a little boy she went to school with for two years.  Mordecai's needs were overwhelming.  His sensory and stimulation issues were so severe that his goals at school were things like learning to sit in a chair without falling out, walking down the hallway without falling down or needing to be restrained.  While Mordecai was working on these things IC was in the same class, working on writing letters, learning to introduce herself and listen to others and respond in a conversation.  Different needs, different levels of care, yet the same diagnosis, the same label, the same category.

Raising, caring for, and watching IC grow has taught me more than I ever could have imagined about people, and their differences and similarities.  IC and I stare at each other across a line between "autistic" and "neurotypical".  It is not a solid line, it's more of a spectrum, with complete autism on one end and complete neurotypicality on the other end, and everyone falls somewhere along the line.  By some measures the space between us on the line may not be that big at all, but when I need to help my child understand something, and I have no way to explain it or teach it other than the way I understand it, that space is like the grand canyon.  I can only imagine what that space must have felt like for Mordecai's mother.  But what I've learned is that that space isn't necessarily there because she has autism and I don't.  It's there simply because we are two different people, and our lives and experiences and thoughts and feelings differ by necessity, with each difference building that space between us.  IC and Mordecai are both autistic but IC was probably closer to me on that spectrum line than to him.  My mother and I are both neurotypical, but maybe I'm closer to IC than to my mother.  Our God-designed brains are only one factor, it's the choices we make with them and the feelings we feel with them that create the distance between ourselves and others.

When I found out that IC had autism, it felt like a death sentence.  Words can't really describe what it felt like without either trivializing it or sensationalizing it, but I cried almost non-stop for days.  I was aware that different people with autism succeeded at different levels and that it was hard or perhaps even impossible to predict at the time of diagnosis what the outcome would be for my child.  Perhaps she would "outgrow" the diagnosis, spend a few years receiving special therapies at which point she would seem so "normal" that the label would be dropped, and we wouldn't ever have to think about it again.  Alternatively, we could find no therapies that she responded to, and she could remain the same developmental age (at the time, about 24 months) as she was at present.  For IC, the journey so far has been closer to the former.  After a short period of moving around she was placed in a school program that utilized therapies that were very successful for her, and we continued from there, reevaluating her needs and growth every few months to determine what changes were necessary, what new things needed to be done, and what old things were no longer needed at all.  I can't say for sure how much her success has effected my perspective on her and her diagnosis, but as I reflected, the word "autism" changed for me.  It morphed from a noun -- a disease, a handicap -- to an adjective that describes my daughter.  I realized that while the condition shaped her and played a major role in how her mind works and who she is as a person, there is so much more to her than that.  Autism is just one part of her life, albeit an important one, just as it is just one part of my life.  IC is thoughtful, girly, fun-loving, humorous, loving, cautious, careful, picky, emotional, deep, whiny, cheerful, and autistic.

I don't mean to downplay the role this condition plays in her life or anyone else's.  I don't mean to disregard or downplay the huge responsibility that caring for an autistic child is, but what I do want to point out is that every child's experience, autistic or neurotypical, and every parent's experience, is different.  While I think support groups for parents of children with autism are a wonderful idea, I have never gone to one, because I think I'd be just as likely to see the differences between our experiences as I would the similarities.  In the end, I would share with them just as many experiences as I share with any other parent.

IC has taught me to look at people as a collection of their experiences, beliefs, values, ways of thinking and ways of feeling.  She has taught me the dangers and the inaccuracies of categorizing and labeling individuals, as necessary as it is to do those things in our world.  She has taught me that the words we use to describe someone can reveal as much or more about ourselves than they do the person being described, and that in the end, not one single person will fit neatly and perfectly into any category with another, nor should they.  God in His infinite wisdom loves infinite variety.  If I could see in pictures the way Temple Grandin does, and then use that skill to dig inside and analyze all the ingredients that make up an individual, only then could I begin to describe him, and even then it would be through my own flawed and tainted perspective.  None of us is capable of understanding another individual completely on our own, which is why I love believing in an benevolent God who knows me better than I know myself.  For me, the true joy in life is studying the people I love and gathering up all those little bits of information that come together to make up their personhood, and just when I think I've almost got them figured out, they shock the heck out of me.  It's a lot of fun.

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