My older daughter Rose and I watched the movie Temple Grandin, starring Claire Danes as Temple, on DVD the other night.
Temple Grandin may be the best-known person with autism in the world. She's a professor of animal science, a wildly-successful designer of livestock handling equipment, and also an author & lecturer on autism. I had the privilege of hearing her speak in the spring of 2010 at the Autism Society of Wisconsin annual conference. (And I got to meet her and get her autograph!)
Rose was fascinated. Very impressed to see Temple's signature on my copy of The Way I See It, inscribed "To [JoyMama]." Amazed at how Claire Danes, whom she'd seen as Beth in the movie Little Women, could become this completely different person. (Temple was amazed too -- as she said at the conference talk, "Claire Danes became me in a way that was really weird!")
Joy wandered in and out of the room as we watched, but Rose was engaged with the movie all the way.
She wondered whether Joy sees the world in any of the picture-flashes that portrayed Temple's thinking, or the superimposed architectural designs.
In the scene where Temple's mother is told of the autism diagnosis and advised to put her daughter in an institution, Rose asked questions and then made the connection with the Where's Molly? story we saw on TV a year ago.
She was distressed by the way Temple's classmates treated her, and shared that she'd seen kids make fun of Joy at school a couple of times. But she allowed as how she gets teased from time to time herself. I pointed out that when Temple was in school, and even when I was in school, kids with developmental disabilities simply didn't get to go to the same schools that typically-developing kids attended, if they even got to go to school at all.
Rose thought about that. "It's so lucky..." she said...
and I expected her to go on to say how lucky Joy is that she gets to go to school with everyone else...
"...for Joy's class that they get to know her and have her in school with them!"
Showing posts with label Temple Grandin. Show all posts
Showing posts with label Temple Grandin. Show all posts
Monday, November 14, 2011
Wednesday, April 7, 2010
Conference Report, Part 3: Eric Courchesne
The third and final installment from the Autism Society of Wisconsin conference is the Saturday afternoon keynote by Eric Courchesne, director of the UCSD Autism Center of Excellence. His talk was called "The Neural Origins of Autism: Evidence of Prenatal and Early Postnatal Brain Growth Abnormalities."
[Note - I'll be calling him by his first name, as I did with Paula Kluth and Temple Grandin, though in each case the more formal choice would be the title "Dr."]
In contrast to Temple Grandin's wide-ranging themes, Eric's presentation built a thesis. He started by referring to a 2009 report from the Information Centre of the UK’s National Health Service that found an ASD rate of 1 in 100 among adults in England, using modern diagnostic standards. This converges with the 1 in 110 rate for children in the US as published by the CDC this past December... in other words, he was taking the stance that the autism "epidemic" has much more to do with diagnostic changes than with a true rise in the condition. (The England study has been somewhat controversial, and Eric was careful to caution that it needs to be replicated before we can give it too much weight.) Come to think of it, Temple hinted at a similar position in her presentation: "Geeks and nerds have always been here... Who do you think made the first stone spear? It wasn't all the yakety-yaks around the campfire!"
Eric went on to point out that until recently, much of the brain-scan research in autism has been done with adults. But if you want brain research to illuminate the "why," you need to start much earlier, back to the age at which atuism first begins to be apparent. So he and his wife, fellow researcher Karen Pierce, have been working on brain studies with little tykes.
One set of results focuses on brain size. It's well-established that people with ASD have unusually large brain size. Courchesne et al (2003) looked children with autism or PDD-NOS and traced their head circumference (HC) records back to infancy. The findings: birth HC of the infants with ASD was smaller than the norm, but shot up to a mean at the 84th percentile by 6-14 months. The children with autism had a greater increase in HC than the ones with PDD-NOS. [This rings true for our Joy, by the way. Her head was at the 70th percentile shortly after birth, 95th percentile by six months, above the 97th by 9 months, and has never gone below that figure since. Rose had a sizable head too, 90th percentile at 12 months, but back to the 82nd percentile by 2 years of age.] Anyway, Eric listed 7 other studies in support of this finding, starting with Dementieva et al 2005.
The next work he described involved doing sleep-MRIs on one-year-olds. To get the right group of little ones to scan, Eric and Karen have set up a network of primary care physicians who do a screener at age 12 months to identify children who show early signs of ASD. Those identified as at-risk then become potential research participants. This network & screening impresses me as a two-in-one coup, by the way -- not only does it serve the research, but it gets the kids screened! I've learned via LEND that there is surprising hesitation in the pediatric community when it comes to implementing standardized developmental screening, whether for autism or just in general.
Anyway. Not only are these MRIs confirming large brain size in children with ASDs (particularly frontal & temporal lobes) but are also showing that autistic-tyke brains are responding differently to normal speech, with activation on the "wrong" side of the brain.
So where are these brain overgrowths coming from? Is it more brain-cells, or something else? Cadaver research on small children can be a hard thing to think about because there's always a tragedy underlying, but generous research donations by bereaved families has allowed some study that actually counts brain cells -- with the astonishing result that the brains of children with ASD had an average of 55% abnormal increase in the actual number of cells!
AND. Eric drove this home hard. Almost all brain cells are generated PRE-NATALLY, second & third trimester. The overgrowth in numbers of brain cells cannot be caused by vaccines.
So why don't symptoms show till later? He showed a fascinating slide illustrating human frontal cortex development. Even though newborns have all their brain cells, those cells are small and have few connections. But between the ages of 6 months and two years, the cells themselves grow and circuit formation goes wild. At that point, the difference in number of brain cells and how they connect begins to really matter.
Eric's lab is currently studying the layers of the cerebral cortex, a process that he expects will lead to identification of genes that are implicated in layering defects. He spoke of his hope that within 6 or 7 years, that the understanding of the brain-basis of autism will jump by leaps and bounds. As he made this prediction, he became choked with emotion... "I have tremendous hope," he said.
When Eric talks about the importance of brain-based autism studies, he also speaks very strongly about the massive waste of research dollars that have been poured into the generally-discredited vaccine causality hypothesis. This infuriates him. And it's not just a casual opinion with him. It's very personal. You see, as he climbed the steps to the stage, he had to support himself with his arms because his legs don't work quite right. He had polio when he was four years old, in the last epidemic wave before polio was essentially wiped out.
By vaccines.
He got a standing ovation at the end of his presentation.
----------
Note: sorry that my referencing of particular papers fell off after the first bit of the presentation. I thought I took better notes than that, but apparently not. Please be assured, though, that every one of the findings was backed by peer-reviewed, published articles, and that Eric took great care to mention the extent to which his work has been replicated. Unlike, and he made this point very clearly, the work of a certain Andrew Wakefield, recently retracted by the Lancet.
----------
Thus endeth my conference reporting. I hope you can see why it seemed important to me to share all three of these presentations! Thank you for hanging with me. I think that as LEND winds down, we'll be returning to our usual Joy-based programming here on Elvis Sightings.
[Note - I'll be calling him by his first name, as I did with Paula Kluth and Temple Grandin, though in each case the more formal choice would be the title "Dr."]
In contrast to Temple Grandin's wide-ranging themes, Eric's presentation built a thesis. He started by referring to a 2009 report from the Information Centre of the UK’s National Health Service that found an ASD rate of 1 in 100 among adults in England, using modern diagnostic standards. This converges with the 1 in 110 rate for children in the US as published by the CDC this past December... in other words, he was taking the stance that the autism "epidemic" has much more to do with diagnostic changes than with a true rise in the condition. (The England study has been somewhat controversial, and Eric was careful to caution that it needs to be replicated before we can give it too much weight.) Come to think of it, Temple hinted at a similar position in her presentation: "Geeks and nerds have always been here... Who do you think made the first stone spear? It wasn't all the yakety-yaks around the campfire!"
Eric went on to point out that until recently, much of the brain-scan research in autism has been done with adults. But if you want brain research to illuminate the "why," you need to start much earlier, back to the age at which atuism first begins to be apparent. So he and his wife, fellow researcher Karen Pierce, have been working on brain studies with little tykes.
One set of results focuses on brain size. It's well-established that people with ASD have unusually large brain size. Courchesne et al (2003) looked children with autism or PDD-NOS and traced their head circumference (HC) records back to infancy. The findings: birth HC of the infants with ASD was smaller than the norm, but shot up to a mean at the 84th percentile by 6-14 months. The children with autism had a greater increase in HC than the ones with PDD-NOS. [This rings true for our Joy, by the way. Her head was at the 70th percentile shortly after birth, 95th percentile by six months, above the 97th by 9 months, and has never gone below that figure since. Rose had a sizable head too, 90th percentile at 12 months, but back to the 82nd percentile by 2 years of age.] Anyway, Eric listed 7 other studies in support of this finding, starting with Dementieva et al 2005.
The next work he described involved doing sleep-MRIs on one-year-olds. To get the right group of little ones to scan, Eric and Karen have set up a network of primary care physicians who do a screener at age 12 months to identify children who show early signs of ASD. Those identified as at-risk then become potential research participants. This network & screening impresses me as a two-in-one coup, by the way -- not only does it serve the research, but it gets the kids screened! I've learned via LEND that there is surprising hesitation in the pediatric community when it comes to implementing standardized developmental screening, whether for autism or just in general.
Anyway. Not only are these MRIs confirming large brain size in children with ASDs (particularly frontal & temporal lobes) but are also showing that autistic-tyke brains are responding differently to normal speech, with activation on the "wrong" side of the brain.
So where are these brain overgrowths coming from? Is it more brain-cells, or something else? Cadaver research on small children can be a hard thing to think about because there's always a tragedy underlying, but generous research donations by bereaved families has allowed some study that actually counts brain cells -- with the astonishing result that the brains of children with ASD had an average of 55% abnormal increase in the actual number of cells!
AND. Eric drove this home hard. Almost all brain cells are generated PRE-NATALLY, second & third trimester. The overgrowth in numbers of brain cells cannot be caused by vaccines.
So why don't symptoms show till later? He showed a fascinating slide illustrating human frontal cortex development. Even though newborns have all their brain cells, those cells are small and have few connections. But between the ages of 6 months and two years, the cells themselves grow and circuit formation goes wild. At that point, the difference in number of brain cells and how they connect begins to really matter.
Eric's lab is currently studying the layers of the cerebral cortex, a process that he expects will lead to identification of genes that are implicated in layering defects. He spoke of his hope that within 6 or 7 years, that the understanding of the brain-basis of autism will jump by leaps and bounds. As he made this prediction, he became choked with emotion... "I have tremendous hope," he said.
When Eric talks about the importance of brain-based autism studies, he also speaks very strongly about the massive waste of research dollars that have been poured into the generally-discredited vaccine causality hypothesis. This infuriates him. And it's not just a casual opinion with him. It's very personal. You see, as he climbed the steps to the stage, he had to support himself with his arms because his legs don't work quite right. He had polio when he was four years old, in the last epidemic wave before polio was essentially wiped out.
By vaccines.
He got a standing ovation at the end of his presentation.
----------
Note: sorry that my referencing of particular papers fell off after the first bit of the presentation. I thought I took better notes than that, but apparently not. Please be assured, though, that every one of the findings was backed by peer-reviewed, published articles, and that Eric took great care to mention the extent to which his work has been replicated. Unlike, and he made this point very clearly, the work of a certain Andrew Wakefield, recently retracted by the Lancet.
----------
Thus endeth my conference reporting. I hope you can see why it seemed important to me to share all three of these presentations! Thank you for hanging with me. I think that as LEND winds down, we'll be returning to our usual Joy-based programming here on Elvis Sightings.
Tuesday, April 6, 2010
Conference Report, Part 2: Temple Grandin
Before the Autism Society of Wisconsin conference slips entirely out of sight in the rear-view mirror, I want to report (as promised) on the second keynote, Temple Grandin. [Note - I'll be calling her by her first name, as I did with Paula Kluth and Eric Courchesne, though in each case the more formal choice would be the title "Dr."]
Temple Grandin's book Thinking in Pictures was the first book I read after Joy's autism diagnosis that presented a perspective from within the autism spectrum. Her account sparked some of my first searching questions about the nature of autism (such as, does everyone with autism think in pictures?) I was so pleased to get a chance to shake her hand at this conference, and get her autograph on a copy of The Way I See It, which I thought I might read on the Kansas car ride, but it keeps slipping down the stack as I take one other books with deadlines like library due dates...
The talk was called An Inside View of Autism and ranged across a variety of topics. As I look at my notes, they're rather a collection of insights rather than an arc of a lecture-long argument -- but it was engaging all the way through. Temple is an accomplished lecturer, an achievement that is reportedly the work of many years. A friend of mine who was also at the conference had heard her speak over a decade ago and compared the two: at the earlier talk, she had relied on self-talk techniques such as "OK, I need to tell a joke here so you won't all get bored." Over the years, she has taught herself to weave the jokes in seamlessly and to move about the stage as a comfortable speaker often does.
Here are some nuggets from the presentation:
Remember how I mentioned in my GFCF post that Temple Grandin was a proponent of "the diet"? Well, she is, but in a more nuanced way than the folks who claim a 90% success rate. Her take: "Out of ten kids with autism, it might work for one or two." But for the people for whom it works, like herself, the improvement is a powerful change for the better. (She also mentioned Omega 3s, and cutting sugar and carbs as well as going GFCF).
My skeptical heart rejoiced to hear her lay into the "rubbish on the Internet"! She directed people to PubMed, the database search tool from the National Library of Medicine that searches published articles in biomedical sciences. (Librarian-ish note -- unless you're affiliated with a university, you'll mostly be able to get just citations and summaries of the articles. But still.)
She had high praise for the Temple Grandin HBO movie with Claire Danes. She said that the movie succeeds in portraying how her visual thinking works. As for the acting, "Claire Danes became me in a way that was really weird!" (I gotta see this movie. I usually don't miss having HBO at home, but this is one exception!)
Temple had an interesting take on behavior and manners. She has a hearty appreciation for how manners were taught when she grew up in the 1950s. It makes sense to me that a well-defined system of rules would be appealing to a mind of a certain structure! However, I've recently seen this used negatively in comments relating to a bloggy dust-up about how people see "us" (kids on the spectrum and their parents), as in: if Temple Grandin thinks that kids with autism should be taught 1950s manners, then it must be the parents' fault that they're acting out in public. Which doesn't sit well with me, having just been party to a clean-up of fist-flung jello. It's not that easy. And I'm not sure that Temple was saying that it was.
One final quote-nugget, which Temple offered in response to a question regarding trying to get appropriate services from a school district in a difficult situation. "Your project is for your son to be successful." The corollary was that being right in fighting with the school was less important than being a clever negotiator, swallowing pride when prudent to get to a place that would better support the child's success.
Our project is for our child to be successful.
Yes.
Temple Grandin's book Thinking in Pictures was the first book I read after Joy's autism diagnosis that presented a perspective from within the autism spectrum. Her account sparked some of my first searching questions about the nature of autism (such as, does everyone with autism think in pictures?) I was so pleased to get a chance to shake her hand at this conference, and get her autograph on a copy of The Way I See It, which I thought I might read on the Kansas car ride, but it keeps slipping down the stack as I take one other books with deadlines like library due dates...
The talk was called An Inside View of Autism and ranged across a variety of topics. As I look at my notes, they're rather a collection of insights rather than an arc of a lecture-long argument -- but it was engaging all the way through. Temple is an accomplished lecturer, an achievement that is reportedly the work of many years. A friend of mine who was also at the conference had heard her speak over a decade ago and compared the two: at the earlier talk, she had relied on self-talk techniques such as "OK, I need to tell a joke here so you won't all get bored." Over the years, she has taught herself to weave the jokes in seamlessly and to move about the stage as a comfortable speaker often does.
Here are some nuggets from the presentation:
Remember how I mentioned in my GFCF post that Temple Grandin was a proponent of "the diet"? Well, she is, but in a more nuanced way than the folks who claim a 90% success rate. Her take: "Out of ten kids with autism, it might work for one or two." But for the people for whom it works, like herself, the improvement is a powerful change for the better. (She also mentioned Omega 3s, and cutting sugar and carbs as well as going GFCF).
My skeptical heart rejoiced to hear her lay into the "rubbish on the Internet"! She directed people to PubMed, the database search tool from the National Library of Medicine that searches published articles in biomedical sciences. (Librarian-ish note -- unless you're affiliated with a university, you'll mostly be able to get just citations and summaries of the articles. But still.)
She had high praise for the Temple Grandin HBO movie with Claire Danes. She said that the movie succeeds in portraying how her visual thinking works. As for the acting, "Claire Danes became me in a way that was really weird!" (I gotta see this movie. I usually don't miss having HBO at home, but this is one exception!)
Temple had an interesting take on behavior and manners. She has a hearty appreciation for how manners were taught when she grew up in the 1950s. It makes sense to me that a well-defined system of rules would be appealing to a mind of a certain structure! However, I've recently seen this used negatively in comments relating to a bloggy dust-up about how people see "us" (kids on the spectrum and their parents), as in: if Temple Grandin thinks that kids with autism should be taught 1950s manners, then it must be the parents' fault that they're acting out in public. Which doesn't sit well with me, having just been party to a clean-up of fist-flung jello. It's not that easy. And I'm not sure that Temple was saying that it was.
One final quote-nugget, which Temple offered in response to a question regarding trying to get appropriate services from a school district in a difficult situation. "Your project is for your son to be successful." The corollary was that being right in fighting with the school was less important than being a clever negotiator, swallowing pride when prudent to get to a place that would better support the child's success.
Our project is for our child to be successful.
Yes.
Sunday, March 21, 2010
Back from a Conference
Didja miss me?
I guess I didn't tell you where I was going, or even that I was going! I just spent the past three days in Green Bay, Wisconsin at the Autism Society of Wisconsin (ASW) annual conference.
JoyDad got to have single-dad duty for those three days. He did great. Rose was weepy the day before I left, but once I was gone she carried on in fine form. I understand that Joy was a little bit of a handful, which I like to think may have had something to do with missing me. Maybe?
When I got home last night, though, she was in a cheerful and chatty mood. We sang Old MacDonald, and she gave me some gorgeous "oink, oink" (you know, the snorty-thing with the cute wrinkled up nose) and a "neigh" or two, and some nice tiger roars.
What, you don't have a tiger on your farm? Well, our farm has a nice noisy one!
The conference was rich and full. I think there are three blog-posts coming here, one for each of the keynoters, 'cause they hit a trifecta of excellence:
Stay tuned!
I guess I didn't tell you where I was going, or even that I was going! I just spent the past three days in Green Bay, Wisconsin at the Autism Society of Wisconsin (ASW) annual conference.
JoyDad got to have single-dad duty for those three days. He did great. Rose was weepy the day before I left, but once I was gone she carried on in fine form. I understand that Joy was a little bit of a handful, which I like to think may have had something to do with missing me. Maybe?
When I got home last night, though, she was in a cheerful and chatty mood. We sang Old MacDonald, and she gave me some gorgeous "oink, oink" (you know, the snorty-thing with the cute wrinkled up nose) and a "neigh" or two, and some nice tiger roars.
What, you don't have a tiger on your farm? Well, our farm has a nice noisy one!
The conference was rich and full. I think there are three blog-posts coming here, one for each of the keynoters, 'cause they hit a trifecta of excellence:
- Paula Kluth, who gave a daylong workshop called The Problem With Behavior Problems
- Temple Grandin (I felt like such a fan-girl... I got to meet her! She autographed a book for me! Swoon!)
- Eric Courchesne, neurological researcher, on the state of the art in autism brain research and implications for what does (and does not) cause autism
Stay tuned!
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!
========================
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!
Subscribe to:
Posts (Atom)