It’s been about a year since the school and pediatrician determined that Rosie’s autistic, and I at least seem to have gone through the process I expected. I knew there would be a wave of assimilation and identification with the new reality to go through, perhaps some anger… stages in the process. And so there has been, but I feel lately as though I’ve come through it and am looking at it in a more matter-of-fact way, so I conclude that this initial period is over.
At first, there was the initial surprise and rejection that I know Rosie’s dad and I both went through – the whole family, in fact. How could her character traits and behavior possibly be labeled autistic? She was just like her dad and I, just a little more so. Following an intense period of research, we realized that of course the traits we shared were actually characteristic in their pattern, and Rosie and her autism became the lens through which we scrutinized our family. Rosie’s dad acknowledged that for some time, he had recognized that she was exactly like he had been as a child, but without identifying it as autism. Since his childhood had been traumatic, he had been trying to protect her, and most of all, not treat her like his parents had treated him. (In this, he has been profoundly successful.) It took me longer to realize that my own childhood traits followed a similar pattern.
Looking at my wider family, for a long time, I had already been aware that the men in my father’s family had something a little odd going on that usually landed them in a great deal of trouble around adolescence. I had actually looked at the autism criteria several times over the years with my brother in mind, but kept dismissing it since his traits weren’t strong enough to be classic autism. Plus, my brother is athletic and I thought at the time that all autistics had motor control difficulty. I found autistic traits in so many of my relatives that I started to worry that I was overapplying the criteria and seeing everything as relating to autism. However, even with a cooler perspective, I can see that the pattern of traits is still there. It’s as much a part of my family’s genetic heritage as our shared bone structure or blood type.
In seeing autistic traits as part of a continuum of human behavior, I went through a period of anger at the way the rest of the world viewed autism that told me that I was identifying pretty strongly with it. I’ve always had this me vs. them resentment; in some ways, this was just another way to fuel it. I don’t think that this anger is over, to be honest, only that this week I’m not feeling it.
This week, this is what I feel: so what? Autism explains my eccentric family. Some of the family members have a diagnosis, some are not about to go get one, some are misdiagnosed, some are subclinical for Asperger’s and are only missing a trait or missing a matter of degree. To my knowledge, no one has a diagnosis of classical autism. Same for my husband’s family, and same for several other families I know where one or more members have an Asperger’s diagnosis, though classical autism pops up in other families with this pattern. To me, that is really a strong indication that the autistic pattern, in humans, is effing normal. It’s part of the range of possible characteristics, and once enough genetic research is done, we’ll likely find that there are other patterns of characteristics other than autism that are triggered by strong genetic combinations or by external factors, too. So… so what? Let’s just get on with being brilliant, and weird, and obsessive, and cranky, and antisocial.
Saturday, December 6, 2008
Monday, December 1, 2008
3 Things to Think About
I am surprised, again. (By so many things, LOL, but here are the 3 for today.)
The other day, my older daughter failed to recognize her uncle, an aspie, in a public place even though she actually interacted with him. This was distressing to him, of course, but hardly less distressing to her! I related to her a couple of similar instances of my own; one where a programmer friend and I missed each other when we planned to meet, though we apparently sat next to one another while waiting; and reminded her of another frequent happening where my family members don't see me moving around the house, if I'm doing it when zoned out and intensely preoccupied. So today, in clicking through the links of a psych researcher in Wisconsin who is championing neurodiversity, I found a blog with a link reading "Autistic Superpowers: Invisibility." I clicked, and assumed it was referring to social invisibility or invisibility with regard to healthcare - something more political. But no, it was about exactly this phenomenon of being not present, or being overlooked...
http://aspergersquare8.blogspot.com/2007/08/autistic-superpowers-invisibility.html
The second surprise stemmed from an excited call from my father about a newspaper article that referred to measurable auditory processing delays being absolutely correlated with autism. He related it to his ability to take a continuous string of auditory input and process it accurately with a long delay period. I ran across a different article today that probably refers to the same research:
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=20307
No comment on that "healthy children" business. No, wait, I am commenting.
The third surprise was another article, reporting on an upcoming publication from researchers who claim that a low frequency magnetic field around the brain can relieve hyperactivity and sensory overload in autistic people. (Interestingly, reported in a business journal first. A marketable therapy, of course.)
http://www.bizjournals.com/louisville/stories/2008/12/01/daily12.html
While I'm relieved to some extent to see this researcher's sensitivity, I have to still consider symptomatic treatment with some trepidation. There are areas where people who are hyperactive and hypersensitive have powerful advantages - read any of the business research on hyperactive entrepreneurs, for example. I worry that overzealous parents will rush to desensitize children who could learn to manage and benefit from their gifts.
Not that I've achieved anything appreciably beneficial with my own sensory sensitivities. (Unless you count being able to smell rattlesnakes, which I think has been a definite evolutionary advantage for my genetic line...) I wouldn't want to desensitize even my hearing, though, which is what gives me the most trouble. It makes a lot more sense to carry earplugs and avoid painful stimuli.
The other day, my older daughter failed to recognize her uncle, an aspie, in a public place even though she actually interacted with him. This was distressing to him, of course, but hardly less distressing to her! I related to her a couple of similar instances of my own; one where a programmer friend and I missed each other when we planned to meet, though we apparently sat next to one another while waiting; and reminded her of another frequent happening where my family members don't see me moving around the house, if I'm doing it when zoned out and intensely preoccupied. So today, in clicking through the links of a psych researcher in Wisconsin who is championing neurodiversity, I found a blog with a link reading "Autistic Superpowers: Invisibility." I clicked, and assumed it was referring to social invisibility or invisibility with regard to healthcare - something more political. But no, it was about exactly this phenomenon of being not present, or being overlooked...
http://aspergersquare8.blogspot.com/2007/08/autistic-superpowers-invisibility.html
The second surprise stemmed from an excited call from my father about a newspaper article that referred to measurable auditory processing delays being absolutely correlated with autism. He related it to his ability to take a continuous string of auditory input and process it accurately with a long delay period. I ran across a different article today that probably refers to the same research:
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=20307
Dr. Roberts and his colleagues have found a slightly different pattern in the magnetic activity from the brain in children with autism spectrum disorders (ASDs) than normally developing children. “Children with autism respond a fraction of a second more slowly than healthy [sic] children to vowel sounds and tones,” Dr. Roberts was quoted as saying.
No comment on that "healthy children" business. No, wait, I am commenting.
The third surprise was another article, reporting on an upcoming publication from researchers who claim that a low frequency magnetic field around the brain can relieve hyperactivity and sensory overload in autistic people. (Interestingly, reported in a business journal first. A marketable therapy, of course.)
http://www.bizjournals.com/louisville/stories/2008/12/01/daily12.html
“Our results are preliminary, but they show a great deal of promise in reducing the severity of symptoms that people with autism find most distressing without affecting areas in which many autistic patients are gifted,” Casanova said in the release.
While I'm relieved to some extent to see this researcher's sensitivity, I have to still consider symptomatic treatment with some trepidation. There are areas where people who are hyperactive and hypersensitive have powerful advantages - read any of the business research on hyperactive entrepreneurs, for example. I worry that overzealous parents will rush to desensitize children who could learn to manage and benefit from their gifts.
Not that I've achieved anything appreciably beneficial with my own sensory sensitivities. (Unless you count being able to smell rattlesnakes, which I think has been a definite evolutionary advantage for my genetic line...) I wouldn't want to desensitize even my hearing, though, which is what gives me the most trouble. It makes a lot more sense to carry earplugs and avoid painful stimuli.
Friday, November 28, 2008
Post-Turkey Reflection
On the principle that I should not have to medicate myself to get through a holiday, we opted out of hosting or attending a family gathering this year. The most pleasant Thanksgivings I remember have been ones where we have enjoyed the holiday in some alternative fashion - turkey sandwiches and a bonfire, going to an amusement park, etc. We chose the amusement park option this year and had a pretty good time. My older daughter, who had to work and so stayed home, reported that my family members showed up at our house anyway, ate the turkey we had cooked for lunch, badmouthed us for a while, and left, but hey - at least Rosie and her dad and I weren't there.
I love the hypocrisy. It's OK, apparently, for my family members to opt out of attending stressful large family gatherings, but it's not OK for me to opt out of hosting a smaller, though equally stressful one.
Rosie rode the kiddie rollercoasters over and over, until I noticed she was toewalking and looking a little wild in the eye, and figured we needed to decelerate a bit. She had a good time.
I love the hypocrisy. It's OK, apparently, for my family members to opt out of attending stressful large family gatherings, but it's not OK for me to opt out of hosting a smaller, though equally stressful one.
Rosie rode the kiddie rollercoasters over and over, until I noticed she was toewalking and looking a little wild in the eye, and figured we needed to decelerate a bit. She had a good time.
Saturday, November 22, 2008
Cranky and Reclusive is Just Fine
Well, Rosie was in a state of nervous exhaustion after the Scouting and art show events, and the poor kid kept crying out and shouting in her sleep. We let her retreat into her room for the morning and early afternoon the next day, and then, after that, she was fine. She popped out cheerful and interested in the world and ready to talk and play and learn. Contrast that with how it would have been if she had to get up early the next morning and meet the demands of six hours in the public school environment. A meltdown or two, a fight, a trip to the principal's office, a wasted day, more negative reinforcement regarding school, and another day or two or three of nerves and shouting - that would have been the minimum. You tell me what's more natural and healthy.
Anyway.
I'm in a bit of an irritable mood myself, after listening to my aunt rant about how my father and her other sister are "wierd" for avoiding family gatherings and refusing to share every detail of their lives with family. The most maddening part is that she thinks there's 'something wrong' with her siblings for being reclusive, yet there's 'nothing wrong' with her and her daughters (all medicated for anxiety disorders), two of her grandsons (medicated for unspecific "psychosis"), three other grandkids (medicated for ADHD), and two great-grandkids (3 years old and not talking yet). What. The. Hell.
There are obviously a range of traits in this particular family, and combined with other traits from other families, they manifest in different ways, some of them disruptive, some pathological, and some not. This is not different than millions of families - from any human group.
I'm just infuriated. Where does anyone get off thinking that they can pick any set of characteristics - someone else's, not their own - and decide they're maladaptive? That goes equally for a school system which decides that a kid can't take a break from interacting with people in an overstimulating environment as a matter of course, and for an aunt who can't accept that another family member might not want to interact with people under a similar set of overstimulating circumstances.
I am not playing Thanksgiving this year, damn it. I WON'T.
Anyway.
I'm in a bit of an irritable mood myself, after listening to my aunt rant about how my father and her other sister are "wierd" for avoiding family gatherings and refusing to share every detail of their lives with family. The most maddening part is that she thinks there's 'something wrong' with her siblings for being reclusive, yet there's 'nothing wrong' with her and her daughters (all medicated for anxiety disorders), two of her grandsons (medicated for unspecific "psychosis"), three other grandkids (medicated for ADHD), and two great-grandkids (3 years old and not talking yet). What. The. Hell.
There are obviously a range of traits in this particular family, and combined with other traits from other families, they manifest in different ways, some of them disruptive, some pathological, and some not. This is not different than millions of families - from any human group.
I'm just infuriated. Where does anyone get off thinking that they can pick any set of characteristics - someone else's, not their own - and decide they're maladaptive? That goes equally for a school system which decides that a kid can't take a break from interacting with people in an overstimulating environment as a matter of course, and for an aunt who can't accept that another family member might not want to interact with people under a similar set of overstimulating circumstances.
I am not playing Thanksgiving this year, damn it. I WON'T.
Thursday, November 20, 2008
Night and Day
Today, a very busy day, did a complete flip from my perspective. This morning, my head was really bad. I haven't been able to organize my way out of a paper bag all week, and levels of anxiety (everything!) have just been escalating by the hour. As I dashed around trying to put together last-minute critical supplies for a Scouting event, I wasn't sure what direction I'd take: scream? faint? cry? throw something? run in circles and smash on the wall? have a stroke?
No. All of those options seemed counterproductive and actually my head was thudding in such a way that I was actually a bit worried about that last possibility. .25 mg of xanax seemed in order.
An hour later, the Scouting event was still hectic and the noise level made tears come to my eyes, but it was manageable - no, more than manageable, it was very enjoyable. But a tad hectic, definitely. Imagine six girls and their siblings, with about two-thirds of the kids somewhere on the spectrum, desperately excited over an important Scouting event. That means three kids screaming either in excitement or distress or both, two kids under the table holding their hands over their ears, another two handflapping so hard I thought they might levitate, one totally checked out, humming to herself and spinning something (mine), and an older sister, theoretically neurotypical, quietly eating her little sister's floral bouquet in the corner (also mine). At that point we had also lost my husband; after two months of a gluten-reduced and nearly dairy-free diet, he was in the bathroom throwing up after eating a slice of pizza. That'll teach us to be the only family in the group who blew off dietary restrictions. Everyone else brought food from home. Fortunately, we had gotten through most of the ceremony before this was the scenario-at-a-glance.
I can't say that I was 100% at the Scouting ceremony; I started the proceedings, got the girls through the GS Promise, began to talk about why we were gathered... and promptly derailed the whole conversation into mathematics. I am still laughing. I don't know how it happened, exactly. I asked the girls how many badges they all had earned, and it turned out to be four each, which they all started to add up for a total, and suddenly the talk took this extreme left turn into multiplication, then factors of four, and then ... then there was shouting, and I was sitting there thinking, "Wow, I have really lost control of this situation," and then a couple of the other moms yelled "Time for the candles!" and got that going. Saved. Whew.
In the evening, there was an art exhibit and event. Rosie had wanted to look for her entry on the wall, do some crafts, listen to some music. But she was too wiped out from the earlier event to want to go at first. Eventually, she decided that she didn't want to miss out on music, and the two of us dragged ourselves there. It was a complete zoo, a total madhouse. About a thousand people crammed in a small space. She had a couple of mini-meltdowns, but we also enjoyed trying out new art techniques, and were able to leave with a tolerably good feeling.
Though we were both exhausted, Rosie and I wanted to eat some healthier food than the leftover pizza waiting at home. So, since Rose was having a craving for laad naa, we went to a Thai place we hadn't tried before. And this is where the evening smoothed out into the crown on a lovely day, as Rosie put it. The restaurant was quiet, with only murmuring conversations, the splash of a fishtank, and the tinkle of soothing music in the air. The seating was comfortable, the lights were low... we had each our favorite comfort food (laad naa for Rosie, tom kha khai for me) followed by luscious khao neeo mamuang. "I don't want to leave," said Rosie. "This is just so nice!" We just felt terrific ("A new me!" said Rosie.), and figured that the healthy food helped, but that the soft music was the best thing.
Ahhh. In any case, evening definitely 180 degrees from morning for me.
No. All of those options seemed counterproductive and actually my head was thudding in such a way that I was actually a bit worried about that last possibility. .25 mg of xanax seemed in order.
An hour later, the Scouting event was still hectic and the noise level made tears come to my eyes, but it was manageable - no, more than manageable, it was very enjoyable. But a tad hectic, definitely. Imagine six girls and their siblings, with about two-thirds of the kids somewhere on the spectrum, desperately excited over an important Scouting event. That means three kids screaming either in excitement or distress or both, two kids under the table holding their hands over their ears, another two handflapping so hard I thought they might levitate, one totally checked out, humming to herself and spinning something (mine), and an older sister, theoretically neurotypical, quietly eating her little sister's floral bouquet in the corner (also mine). At that point we had also lost my husband; after two months of a gluten-reduced and nearly dairy-free diet, he was in the bathroom throwing up after eating a slice of pizza. That'll teach us to be the only family in the group who blew off dietary restrictions. Everyone else brought food from home. Fortunately, we had gotten through most of the ceremony before this was the scenario-at-a-glance.
I can't say that I was 100% at the Scouting ceremony; I started the proceedings, got the girls through the GS Promise, began to talk about why we were gathered... and promptly derailed the whole conversation into mathematics. I am still laughing. I don't know how it happened, exactly. I asked the girls how many badges they all had earned, and it turned out to be four each, which they all started to add up for a total, and suddenly the talk took this extreme left turn into multiplication, then factors of four, and then ... then there was shouting, and I was sitting there thinking, "Wow, I have really lost control of this situation," and then a couple of the other moms yelled "Time for the candles!" and got that going. Saved. Whew.
In the evening, there was an art exhibit and event. Rosie had wanted to look for her entry on the wall, do some crafts, listen to some music. But she was too wiped out from the earlier event to want to go at first. Eventually, she decided that she didn't want to miss out on music, and the two of us dragged ourselves there. It was a complete zoo, a total madhouse. About a thousand people crammed in a small space. She had a couple of mini-meltdowns, but we also enjoyed trying out new art techniques, and were able to leave with a tolerably good feeling.
Though we were both exhausted, Rosie and I wanted to eat some healthier food than the leftover pizza waiting at home. So, since Rose was having a craving for laad naa, we went to a Thai place we hadn't tried before. And this is where the evening smoothed out into the crown on a lovely day, as Rosie put it. The restaurant was quiet, with only murmuring conversations, the splash of a fishtank, and the tinkle of soothing music in the air. The seating was comfortable, the lights were low... we had each our favorite comfort food (laad naa for Rosie, tom kha khai for me) followed by luscious khao neeo mamuang. "I don't want to leave," said Rosie. "This is just so nice!" We just felt terrific ("A new me!" said Rosie.), and figured that the healthy food helped, but that the soft music was the best thing.
Ahhh. In any case, evening definitely 180 degrees from morning for me.
Sunday, November 16, 2008
And Peaceful Days Too
A pleasant weekend day, at least. Model trains, a walk on the pier. The ocean was very soothing, even with the excitement of a fisherman managing to hook a thresher shark. The crowd's behavior was interesting; everyone trying to catch everyone else's eye and say something about the event. Everyone followed the fisherman up and down the pier as he worked on getting the shark in.
We were enjoying the excitement when a girl about twelve years old came up to us and said to us "It's a long tail!" There was a family pause, where I know we were all thinking something like Long tail? She sounds like a character in a movie about the Stone Age. "Thresher shark," Rosie's dad and I both blurted out. "The thresher shark has a caudal fin as long as its body," Rosie observed. The girl blinked at us for a moment and turned away.
Naturally.
I'm sure if one of us had known the scientific name for the thresher shark, he or she would have blurted that out, too. Sigh.
We were enjoying the excitement when a girl about twelve years old came up to us and said to us "It's a long tail!" There was a family pause, where I know we were all thinking something like Long tail? She sounds like a character in a movie about the Stone Age. "Thresher shark," Rosie's dad and I both blurted out. "The thresher shark has a caudal fin as long as its body," Rosie observed. The girl blinked at us for a moment and turned away.
Naturally.
I'm sure if one of us had known the scientific name for the thresher shark, he or she would have blurted that out, too. Sigh.
Saturday, November 15, 2008
Girls & Asperger's
Posting while listening to Rosie and her grandmother have their morning argument. Very unpeaceful. It's always something. They're about equally pigheaded each in her own way.
Anyway. A quick post, since I'm out of time this morning.
A friend sent me a link to a Newsweek article "Why Girls with Asperger's Might Not Be Diagnosed." http://www.newsweek.com/id/168868/page/1 I'm glad to be seeing much more attention being given to the differences in thought.
And, I finally did get Attwood's book Asperger's and Girls, though writing about it will have to wait a bit. I had about the confusing reaction I expected - sometimes upset, sometimes grateful. There are a lot of things I'm going to need to remember to tell Rosie as she gets older, and I'm very glad to have some input there.
Anyway. A quick post, since I'm out of time this morning.
A friend sent me a link to a Newsweek article "Why Girls with Asperger's Might Not Be Diagnosed." http://www.newsweek.com/id/168868/page/1 I'm glad to be seeing much more attention being given to the differences in thought.
And, I finally did get Attwood's book Asperger's and Girls, though writing about it will have to wait a bit. I had about the confusing reaction I expected - sometimes upset, sometimes grateful. There are a lot of things I'm going to need to remember to tell Rosie as she gets older, and I'm very glad to have some input there.
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