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Friday, May 25, 2007
This is my week to come clean, apparently.subtitled The Asperger's PostWhen stressful things occur in my life, I like to take a week or month or year to process them before discussing them with anyone else. I think it's a superstitious thing -- I can't risk having things "jinxed" while they're still freshly occurring. Or else maybe they're like paint -- not safe to touch when freshly applied.
Hence, I'm just now telling y'all about stuff that's been on my mind for months now. I think it's a good sign that I can talk about these things on the blog now. It means I have them a little more under control. That said, I'm gonna talk briefly about one of my kids now, and what's been going on with us.
My middle son, now 12, was recently diagnosed with Asperger's Syndrome, which basically means "touch of autism." This didn't come as a big surprise to me, because I noticed shortly after his birth that he had some autistic-esque symptoms. I'd never bothered to have him formally diagnosed, however, because he's very bright and had managed to get along well enough through his younger years.
Until now. Now, in middle school, he's been having a lot of problems. Or, maybe I should say that people around him have been having problems with his behavior. At first I defensively blamed our new school district, branding their staff as intolerant, but it was bound to happen, I suppose. In elementary school, everyone was used to Dallas's slightly un-typical ways. No matter what middle school he went to, I suppose it was inevitable that people would notice and react to his differences in a bigger way.
So, we started the formal diagnosis process back in November or December. I was really, really reluctant to have my child labeled, but by then, it had become the lesser of two evils. My son's behavior was being misconstrued in a way that affected his grades.
Common Misconceptions Surrounding People with Aspergers
1. People with Aspergers often find it uncomfortable to make or maintain eye contact. That discomfort can be misconstrued as disinterest or disrespect.
2. People with Aspergers often cope best with situations in which the rules and expectations are logical and clearly explained. Questions about rules can be misconstrued as disrespect for authority.
3. People with Aspergers, although often extremely intelligent, sometimes cope with stress by doing things that "typical" people don't. Like verbal tics. Or repetitive movement (rocking, hand flapping). Or focusing on inanimate objects. Or seemingly disengaging mentally.
Add to that the fact that people with Aspergers are frustrated by things that don't necessarily frustrate neurotypical people. Like certain noises, or prolonged eye contact, or seemingly illogical occurrences, or flickering lights, or being touched on the head, or being touched at all. So... someone reacting atypically to something a neurotypical teacher would not find stressful can be misconstrued as willfull misbehavior. Or horseplay. Or constant lollygagging. Or disrespect. Or mental retardation. Or Tourette's. Or a condition that, although unidentified, would surely be improved by a little Ritalin. Or stupidity. Or simply something "weird," that needs no investigation or empathy, but only for this weird kid to be removed from your class. From your sight. From your mind.
4. People with Aspergers don't learn social skills in the same way that neurotypical people do. Whereas most people make eye contact with their mothers and caregivers instinctively, from birth, people with Aspergers might not make eye contact unless they are explicit told to do so on a regular basis. And, even then, they might not make it "correctly." Whereas you or I might grow up with a general instinct about eye contact -- when it's appropriate and when it's creepy -- a person with Aspergers might need to have every detail of that knowledge explained.
And how do you explain knowledge you were born with, or knowledge you picked up on instinctively? If a person can't make sense of the rules of eye contact, the first building block of social interaction, on his own, how will he make sense of the intricacies of small talk, or making friends, or finding romance? Will he be able to detect dishonesty, insincerity, or malice? If people are threatening him, bullying him, taking advantage of him?
(The answer to that last: Maybe he will learn these things if he concentrates very, very hard on understanding them. Like Mr. Spock struggling to understand Captain Kirk and Dr. Bones. Or maybe he will learn these things if he's taught them by very patient, very empathetic people.)
Back to my story... the story of an overly stoic mom...
So, like I said, I feared having my son formally labeled. Why bother, I thought, when he gets along just fine at school? And when there's no cure for Aspergers or autism, anyway? What's the point? Why go through the hassle? Let him keep passing as a neurotypical person.
I wasn't in denial, exactly, but I do admit that the idea of identifying my child as "disabled" had some strong conotations for me, personally. For instance: I was raised to believe that going to the doctor is only for emergencies. That asking for help is only for emergencies. That highlighting one's own differences is at best a cry for attention and, at worst, a cry for pity.
I would take care of it by myself, I decided. I researched and read everything I could. I coached Dallas on my own. I talked to his teachers frequently and diplomatically and smoothed over the few incidents that occurred. (It helped that his teachers, on the whole, were very empathetic people. For that I thank God.)
Y'all might remember that I was very disappointed last year when Dallas didn't get into any of the middle schools that we applied for. I'd had my heart set on staying in Houston's Inner Loop, but it seemed apparent that the Inner Loop had its heart set on ejecting us and replacing us with someone richer.
Y'all might remember that I was equal parts happy and apprehensive about buying a house in the suburbs. Although people have been thriving in the suburbs since caveman times, almost, it was new and alien to me, and I feared massive culture clash and change.
So now we live in the neighborhood that I will call Farfield, and my kids go to school in Farfield ISD. And, as I mentioned above, people at Dallas's new school noticed right off the bat that he was not typical. And, so, it came to pass that diagnosing his atypical-ness was what I had to do, if I wanted it construed as what it was, and not as disrespect, retardation, stupidity, or a disability requiring medication.
And now that that's all been done, I'm glad. Farfield ISD turns out to have some extremely awesome, competent educational professionals. And they have what promises to be an awesome program to help kids with Aspergers learn the things that they can't learn instinctively.
So, in a hokey, superstitious way, I've come to believe that the circumstances that led us there did not take place by chance. Inner Loop gentrification and housing inflation, Dallas's bad middle school application luck, our apartment's sudden rat infestation -- it all led to Dallas traveling to a place where he'd get help.
Which is good, because people need all the help they can get, I realize. Even me.
This is going up unedited now. More on this later. Much more, way later. Thanks for reading, y'all. 6:09 AM #
Comments:
I used to work with children with autism spectrum disorders. They ran the gamut from severely low-functioning to extremely high-functioning. I haven't worked there since January 2004 but I still think about each and every kid and wonder how they're doing.Thanks for this post.
# posted by
Adia : 11:52 AM
Gwen, I totally get it. It makes sense and I hope he won't be misunderstood at school anymore. Your family is awesome. You're unique and cool and everyone needs to know that.
Also, you opened my eyes on Asperger's. It occurs to me that an intern at my office must have it because you described his mannerisms to a T. He is smart and intense, and I've noticed he needs absolute rules. He seems incapble of going with the flow. I'll be more understanding now.
Good luck with everything you're dealing with.
# posted by
Marigoldie : 12:00 PM
Hey, I grew up in the Houston 'burbs and I loved it. The schools out there are cool, but I was at FBISD. Fun times.
Good luck with your son. I'm going into teaching next year, so I can only hope that I can be one of those teachers that can help.
# posted by
Kimberly : 3:54 PM
I had a coworker with Asperger's (well, as far as my untrained eye could tell) and he had learned to deal with us sloppy non-precise types by just a smile-and-nod sort of technique; I think he told himself we were just harmless semi-annoyances. But he was very good at his job, which was detail-oriented to the nth degree. And had a girlfriend too, who was very nice.
My nephew has a touch, too, undiagnosed, but the eye contact thing etc are all dead giveaways.
# posted by
Janell : 8:44 PM
I admire you for not wanting to label him. It might not be everyone's choice but there's a definite wisdom in that. You got him what he needed when he needed it but also gave him a chance to learn more about himself without being labeled.
I don't know a lot about this. OK, I know nothing about this but it does sound like he's got a lot going for him and, with you as his mom, he's going to be great.
# posted by
ozma : 10:56 PM
Hi Gwen,
I hope your son does really well in the new program.
I was labeled educationally hadicapped early on, and stayed into he EH program through out junior high and high school. I graduated on time and with my class, and I have never stopped learning.
Janice~
# posted by
Janice : 2:57 AM
I'm glad you got him tested. It's so hard when parents don't want to go through the process because they've grown up with medical ideas like those you and I have. In the end, it hurts the kiddos because, sadly, schools really can't do anything until the label is there. It's all part of the system.
# posted by
La Brown Girl : 8:23 AM
Gwen, through all of your research and reading, have you come to the conclusion that every single person on earth registers SOMEWHERE on the spectrum (autism spectrum, that is)?
That's what I've come to conclude based on all the reading I've done. My niece is now six and she was diagnosed as having moderate ASD around two and a half. So, it's been almost four years of reading and researching for me.
I have identified my own numerous non-neurotypical traits and those of the people around me (I've kept those findings to myself, heh).
If people really thought about the people and behaviours that have been dismissed as quirky or odd, they'd see that while some of us are more neurotypical than others, none of us are "normal." Thank goodness for that.
- maggie
# posted by
: 9:40 AM
Adia: I'm sure your vibes of concern and well-wishing are reaching them in some way.
Marigoldie: Thank you.
Also: Did You Know? People with undiagnosed Aspergers used to get called "engineering types," sometimes. Aw, yeah... y'all know who I mean, now.
Kimberly: Thanks. And, I'm sure you will be. Honestly, most of Dallas's teachers have been completely cool. But two or three of them... I know you won't be one of the bad ones.
Janell: Thanks. I like stories in which Aspergers peeps have successful friendship and relationships. :)
Ozma: Thank you. :)
Janice: Rock on. Thanks.
Brown Girl: Thank you for that side of it. Actually, I'm glad you're still reading, because I have so many observations on the intersections between this system and our culture. I have a Latino friend with whom I've had long discussions about our culture being more "accepting" of difference. Or maybe not so much accepting, as stoic, or uneducated, or too passive within the system...?
I'm glad you're teaching and that you continue to advocate for our kids and serve as a bridge between cultures. I never tell you that, but I always read your blog and think it. :)
Maggie: YES!
I've been telling people that the autistic spectrum is like homosexuality, in that we all fall somewhere on a very graduated scale. Heh.
I've been secretly assessing and diagnosing people left and right -- *especially* myself. (I wonder if I was AS at birth, but got it socialized out of me by very strict old women. :) )
Autistic behaviors are coming out of the woodwork now.
Have you read the theory yet that some people believe the increase in ASD diagnosis is evolutionary? I'm fascinated by that, but haven't yet read enough to call myself a believer.
# posted by
Gwen : 6:38 PM
Thanks for the post, Gwen. My sister was diagnosed with autism about 8 years ago. It's always been difficult to explain to people how she's just a little bit different, and needs to do things differently. She's going really well at her new high school, though, and her future looks a lot brighter to me as she starts to feel happier and more comfortable in mainstream social settings.
The idea of everyone being on the ASD scale is interesting, though, especially when I look at my extended family. I see bits of it everywhere, including my own nerdish behaviour. In some ways my sister is much more 'normal' than me, except that I didn't have any learning difficulties.
# posted by
Kathleen : 9:17 PM
I commend you so much for this, Gwen. I've felt for a while that something wasn't quite right, that you were dealing with some unusual stress--and I'm sorry to find out that I was right, and even sorrier that it has to do with one of your boys. You're a strong, tight, family, and you'll all be fine. Dallas is lucky to have you as a mother. If I can help in any way, please let me know!
# posted by
tina : 11:58 AM
Gwen, I'm glad to hear that everything is turning out ok.
# posted by
Phoenix : 3:38 PM
Gwen, I've read a bit about the theory about the increase in ASD diagnosis being evolutionary, I think. That dovetails a bit with the anecdotal incidence of like marrying like (engineers, software developers, etc) and having kids with ASD. That's a really simplistic explanation, but you know what I mean.
Have you read "Not Even Wrong" by Paul Collins? I read it a couple of years ago and I'm going to reread it soon. That book is fascinating. Collins and others have looked at all the major technological and scientific advances of the last century and have basically diagnosed those responsible as having some level of ASD (Bill Gates is widely cited as being such a person, as is the Turing machine guy). People with ASD have such a different way of looking at things and problem-solving that it is unfathomable for me.
Collins' son has an autism diagnosis which he researches and he weaves that into his story of researching 19th century "wild" children (those who were found in the wilderness supposedly raised by wolves). So very interesting how he uncovers fact from fiction about all kinds of people traditionally labelled odd.
I sympathize with you about a strict upbringing forcing you to find ways to sublimate your ASD tendencies. There was no encouragement for me to fly my freak flag in the rigid role I was supposed inhabit.
My niece's parents veer into that territory demanding that she stop flapping or spinning at times and it makes me grit my teeth because I don't find it all that socially unacceptable. It happens when she's obviously bombarded with stimuli. How about turning off the TV or turning down the loud music, or removing her from the situation instead of trying to control her behaviours? Now I'm veering into parenting criticism which is not cool.
-maggie
# posted by
: 3:58 PM
I'm so glad to hear that he's in a school district with awesome educators. The idea that there is a spectrum of...uh, neurotypicality?..is an interesting one too. It's like the idea that everyone exhibits at least a couple of "personality disorder" characteristics, which certainly puts some of my behavior and those of some of my friends into a whole new light.
I hope Dallas and his brothers have a fantastic school year.
# posted by
Chiara : 6:31 PM
You are just awesome. Completely awesome.
# posted by
That Chick Over There : 6:39 PM
I appreciate you sharing this, and I am glad to hear that everything aligned for Dallas to be placed in a good school district.
My daughter also exhibits some Aspergers symptoms, and although we've been able to help coach her through certain situations, I am sure the time is coming where she'll have to be formally evaluated. Thanks for showing me that the process doesn't have to be scary.
# posted by
Angela : 7:59 AM
Gwen,
Thanks so much for this. My eldest stepson was diagnosed with Aspergers several years ago. His mother basically told us he wasn't allowed to have it... But, since it's not really a matter of treating it, so much as helping them learn to manage it, we've just gone along our surreptitious way, and never mentioned it again.
He's great in math, and has found his way in social situations with help and lots of love. He just finished his first year of college, and is starting to think of ways to ask girls on dates. We're really proud of him, because he's a really conscientious, kind person, if a bit rigid in his thinking.
I think the good thing about a diagnosis is that it does alert the teachers to the kid's temperment, and (hopefully) put them in a mindset where they can help him to grow, instead of treating them like living breathing behavior problems.
Of course, those are the good teachers, and, unfortunately, the bad ones are out there.
# posted by
Amy : 6:40 PM
Your kids are lucky to have a parent as smart and empathetic as you to advocate for them. My superstar mom (PTA president, nurse, children's hospital guild member) spent several years as a school district nurse who was constantly bumping up against the system when trying to work with students and parents. She also saw too many "problem" children who got disciplined and medicated improperly.
I wish the best for you and your family and am happy to hear you have some educators who get it and want to help.
# posted by
Kaijsa : 8:36 PM
I grew up with a kid who had these behaviors, a guy who would these days be identified with very typical Aspberger's...a bright, nice guy, who went on to medical school and graduated at the top of his class, married, and is a successful pathologist now...I think of him whenever I hear the somewhat condescending term "high-functioning" used to describe people w/ this condition, since one might argue he is now higher functioning than the school officials who identify and and apply the Aspbergers label.
# posted by
: 9:19 PM
I am so glad that he will be better understood now!
# posted by
: 11:48 PM
Gwen, I'm with you on the resistance to labeling, because I think too often it's just a way to write a kid off and not bother to teach them anymore. But it seems like you're really doing the best possible thing for your son. I think it comes down to the school systems, and whether the professionals in your particular school district are motivated and qualified or not. It sounds like you have that, at your school, and that it will help Dallas.
# posted by
kate : 6:31 AM
To come clean right away - I'm a teacher, and I'd like to think that I'm a good one. And I'm not a parent, so I won't pretend to understand how difficult it can be to have your child diagnosed or labeled as special needs. But as a teacher, I CAN'T offer the same services to a child without a documented diagnosis as I can to a child who has that paper in his or her chart. I am so happy that your son is going to be able to benefit from all of the things his teachers will be able to do for him now.
# posted by
: 5:15 PM
I'd always been told that "Farfield" had not only an exceptional G&T program, but exceptional programs for EVERYONE needing more attention in certain areas. I'm thrilled Dallas is in a position to take advantage of it.
Kinda makes that commute worthwhile, doesn't it? ;-D
# posted by
: 9:53 AM
Kathleen: Oh, that's good. You and your sister give me hope.
Tina: Thank you. :) Yeah, between the school issues, and the crazy person, and work drama, it's been a hectic spring. But that's all done with now. Good times ahead.
Phoenix: Thanks.
Maggie: No, haven't read that one yet. I haven't read any full books yet, just Internet articles and stuff. I'll put Collins on my list, right after Temple Grandin. She's autistic, herself, and her book is supposed to be super awesome.
I'm with you on the parental critique -- it's really hard not to go there, isn't it? My son used to flap his hands a long time ago, but his dad made him stop. So he of course replaced it with other tics, some of which attract even more attention. I've noticed that he still flaps his hands every once in a while, though, when he thinks no one is watching. I'm like, "Dude, flap your hands. Flap the hell out of them. Here, I'll do it with you."
Right now I'm feeling strong anti-curebie prejudice. Curebies is what the autistic community calls parents/educators/professionals who are hell-bent on curing children of autism. (Or making money from claiming they can.)
Chiara: Thanks. Yeah, it really is just like anything on the DSM. Everybody can identify, at least in part, with any given neurosis or mental disorder. And, once people understand what autism/aspergers really is, they can all identify with at least one of its traits. So... understanding and empathy are sure to follow, I'm certain.
Chick: Thank you. :)
Angela: You're welcome. Good luck. I wish y'all the best with it.
Amy: Aw! Sniff! Good for your stepson. He's lucky to have had you for an extra parent.
Kaijsa: Thanks. Your mom sounds awesome. And, you know, it's funny... going through this makes me want to change careers, sometimes. I don't know what I'd do -- it's too late to become a speech pathologist, I think -- but I definitely feel some kind of advocacy looming on the horizon.
Anonymous: Right? I totally get you. Sometimes it annoys me that scientific or mathmatic skill sometimes isn't valued as much as the skills needed to charm the teacher or befriend the popular kids. That's been steadily changing, I know. But still.
Elizabeth: Thanks.
Kate: Thanks. Yeah, every district -- and every education professional -- is going to be different. If the labelling helps with at least some of them, it's worth it. You're right.
# posted by
Gwen : 9:57 AM
Anonymous teacher: Thanks for your perspective. I do appreciate it.
I'm not going to pull the "yeah, you're not a parent, so you don't know!" angle on you, because that's obnoxious. But I do have to add a little of my own perspective.
It's not the diagnosing or labelling that was the hard part. You know what the hardest part was? Explaining it to my son. Can you imagine that -- telling your own child that he needs to be tested and labelled and then given extra classes to make him "normal"?
I'm glad that going through this process makes it easier for his teachers to do their jobs. Sincerely, I am. But, way more than that, I hope to God that undergoing this process didn't scare my child, or traumatize him, or make him lose trust in me, or irrevocably damage his self-esteem.
Because those results would last way longer than a poor daily participation grade. You know?
As a teacher, you see all kinds of kids and all kinds of Mods and IEPs every day. And I appreciate your expertise. But, as a parent, this is my first time ever having to go through this. I'm more worried about handling it right, for my child's sake, than I am about the system and all its Mods and IEPs and ARDs.
I'm not trying to pick on you specifically - hope it doesn't seem that way. I'm just using your comment as a springboard for something I needed to say. So, thanks for giving me the opportunity.
(And, I need to reiterate here that most -- 92% -- of Dallas's teachers have been completely awesome. And I do appreciate them very much.)
# posted by
Gwen : 10:11 AM
Jennifer: Yes. It totally does. :)
# posted by
Gwen : 10:12 AM
Gwen--you are a rockstar! Dallas will clearly thrive...
I completely hate labels. I'm a psychiatrist, and have been heretical enough to say in public that I'm not so sure that there are actually things such as schizophrenia (partly to be provocative, but still). All of the psychiatric "disorders" are a collection of symptoms, that ANY OF US can have at any time, for a long or short period of time. Just like this autistic spectrum we are all a part of...
Despite my distaste for labels, there are two reasons to put up with one. Firstly, to get the services. If there are services that can be helpful, he should have them. End of story.
Secondly. One of my current patients is a 50 year old man who came to treatment for depression and anxiety. Working together, we came to the understanding that he has Asperger's. Previously had a night job, can't abide it when people aren't logical, has been on two dates in his life, does the same things in the same order everyday, is absolutely brilliant. He was in some ways relieved to find out that there is a name for what he experiences, and that there are other people who also have the same struggles. For him, there was something profound in knowing there is an explanation. Previously, he was burdened by his sense of failing to be a "normal person," that he was doing something wrong.
Once it clicked with him emotionally (and not just intellectually) that his brain seems to be wired in such a way that he has an impairment in interpreting nonverbal communications, he delights in pointing out what he thinks are "Aspie" things that he should work on, and is much less anxious. He told me once that he thinks he has "more than the average number of quirks."
Whatever the average number of quirks is...
# posted by
: 7:36 PM
Gwen, I think it would be difficult for me to feel picked on specifically (especially with my anonymity preserved!). If anything, your concern for your son's well-being gives you the right not to worry about whether you're stepping on anyone's toes. I'm glad that most of your son's teachers have been so wonderful, and I hope that he continues to work with great people. It's always easier to help a child when you feel like you are working together with his or her family.
# posted by
: 8:57 PM
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