Posting about Asperger’s in any manner brings out a variety of responses. Luckily none of my readers take the Dennis Leary approach of using broadside humor to obscure the reality of what kids who meet the criteria are living with. Unlike many other people I don’t have an issue with Leary. He is using Asperger’s the same way other comics use obesity, i.e. it is merely fodder for cheap shot visceral gags. Not all obesity is the result of a failure of will or personal character either. However, I am glad that the people who respond to me are thoughtful and offer measured commentary.
In that regards I got an e-mail in response to my posting on Parenthood. I have edited it just a little so that the author is not readily identifiable. But I think her e-mail merited more that just a hidden interchange between she and I. The issues she raised are some of the key aspects of the debate on Asperger’s. Here is the e-mail and also my response.
Dear G,
I wanted to respond to your blog but I didn't want to sign up for a Google account, so since I know the author personally I thought I'd just share my thoughts with you. I hope nothing I say will offend you as I do not have any first hand knowledge of Asperger's Syndrome except that I am a teacher familiar with a range of conditions. My own child had an IEP all throughout her school years. She was/is a stutterer and while it is dramatically different than what you are dealing with, I know the heartache a parent can have when their child is not "like everyone else."
Since this blog entry was related to a TV show, I was reminded of another show I recently watched, some doctor show where the dad was in denial about his 11 year old daughter’s schizophrenia. He felt like he caused it. I immediately go there whenever my children have any kind of flaw. I assume they must have gotten it from me.
I wonder if there has ever been any studies on the parents of Asperger Syndrome kids and any connection to high intelligence. I always suspected you were pretty smart. (They told us in our teacher classes that Bill Gates had Aspergers).
Aspergers Syndrome was never even a diagnosis back when we were kids was it? And if it wasn't and kids still had it but it wasn't diagnosed as such, didn't the kids simply grow up and get on with life the best they could. Wasn’t it kind of like before ADD/ADHD kids were diagnosed and put on meds?
I'm not trying to minimize your son's condition in anyway but sometimes I think that maybe labeling kids with these diagnoses might make the parents and the kids feel worse. These names are so powerful. As a teacher I see kids with psychological and physical limitations but I can tell you that I have always tried to see the child as a person and not as their condition and hopefully your son's teachers can do that as well.
Bea,
Dear B,
I would not be offended by anything you might say in a considered discussion. I understand the label issue you have raised and it is one we considered long and hard before getting involved with the whole machine of psychologists/ASD consultants, diagnoses, etc.
In a way we were forced to make the choice we did due to the strains on public education here in Michigan. Without a diagnosis the chances were quite strong that Primus would simply be considered a troubled child and shunted to the edge of the mainstream. It was already happening when we took action. We know and his SAT scores show (he scored median for college bound high school seniors when he took that test in seventh grade) he is a bright kid.
I make the above comment about being shunted aside without reservations as to the accuracy of the statement. Primus had begun demonstrating very clear and evident ASD traits in the second grade. However despite what was supposed to be an intervention with a school social worker (who I have since been told had been trained on ASD issues) not a word was said to us about larger issues beyond shyness that might exist for him.
The intervention which was ostensibly to try and aid him building social connections, something it was evident he did not care about. The intervention brought out no referral or suggestion for an evaluation for a condition like ASD. Other issues tied to the disorder were clearly evident at that time. A review of our notes from past parent teacher conferences show that symptoms were being referenced by his teachers that nobody in the school social work/psychologists office thought to tie together.
Every one in the system was more than happy to leave him to fend for himself despite problems with auditory stimulus, limitations with fine motor skill function, extreme clumsiness and grand scale social ineptness. I have since had contact with others in the district that have alerted me that become of economics involved in working with disabilities the schools do not want to find a diagnosis of Aspergers if it can at all be avoided; it is costly.
The way we became aware of ASD was though my wife. One day as my spouse who works at Michigan State University for the Dean of one of the colleges was sorting through prof-net queries (queries seeking thoughts on scientific questions sent out to universities all over the place) to forward on to different faculty she came upon one researcher who was seeking learned comments on why the Aspergers syndrome in boys was growing at such a rapid rate. Wondering what Aspergers was she then looked up the parameters of the diagnosis and brought it to me. Looking at what she found and how closely it aligned with our son’s behaviors I agreed we should get him evaluated. The psychologist we eventually found told us he hit the diagnosis on all measures.
We then called the school and asked to set up an evaluation for an IEP. There response was that they would contact us at a later time. We waited and we waited. At that point I did my legal research and figured out that without a written demand the school would not have to act. Post haste I sent the demand letter that sets the time limits for conducting the review. It is reasonably certain he school would not have moved forward without that little certified letter. When they did the review not a single drafter of the seven reports the school district created did anything other than acknowledge the condition.
Since the IEP has been in place we have been able to deal with issues that would have caused Primus endless grief and bad grades in the past. One teacher last year insisted on giving him assignments that repeatedly called for him to place himself in the shoes of another and write about their emotions. Duh, we kept writing her e-mails indicating that Aspergers kids are not tied into this level of emotion so as to be able to write at length on issues of sympathy and empathy. Without the intervention of the advocate the teacher was hell bent on flunking him because he would not do this kind of work. We asked the teacher if he could do technical reports or more straightforward book reviews before getting the advocate involved. We were rebuffed and she was having none of it. The advocate then stepped in and took over and created the writing assignments.
In our day in school, in our more rural than not environment, a good caring teacher could read these differences in children and work out a way to bring along a kid who had special needs and unique talents to a point that their life would matter. In a urban environment where the curriculum is driven by the no test not taken standard there is no margin that will allow a teacher to do that kind of thing. Without the club that the label is and without the sanctions that follow from not following an IEP my child would have been written off as a troubled and troublesome ass.
Forgive me if I sound a little hostile toward my district the experience has truly been a mixed bag. I have worked with some very good people in our system here. However I think the state of education in Michigan is such that economics drive decisions about child welfare. It is in every administrator’s best interest to avoid the costs associated with IEPs.
You mention the comment I have heard often about why there is such prevalence now of this disorder as opposed to when we were in school. Two or three things come to mind. One is that with the growth of psychological and the empirical studies of behavior we have broken down that much larger class of behaviors that we used to define as “different” behaviors. We can separate things out that used to be lumped together. Second I believe that our environment has impacted us in ways that with the more concentrated toxicity manifests more readily. Hey I have heard you say in our posts, that you believe there is something in the Delaware Valley that causes physiological issues. You had the onset of your illness in your twenties. I had prostate cancer at 50 which is really young for that malady to show up. Do I blame the DuPont stench, well maybe. Could the crap we inhaled as teens have impacted our genes and cells so that it has altered the next generation, well definitely maybe.
I am not an advocate here for anyone but my son. But what I know is that in our case the label has helped more than hurt.
There is a point to your comments. It is clear that you care for kids in your charge and other kids dealing with the academic process. I am sure every single day you are engaged in a balancing act with regard to each child you interact with. With all the labels and programs and requirements sometimes you wish it could be resolved in a simpler more holistic way. Me too. But our world is not the world we lived in as kids when a look from a seasoned gym teacher would stop a kid dead in his tracks or a caring history teacher would pull you aside and work with you.
Our society as a whole outside of engineering doesn't have places for the socially inept but technically skilled anymore. We are too wired a world for that. With Facebook and cameras on every phone the awkward are at risk. I digress.
Sincerely,
G
In that regards I got an e-mail in response to my posting on Parenthood. I have edited it just a little so that the author is not readily identifiable. But I think her e-mail merited more that just a hidden interchange between she and I. The issues she raised are some of the key aspects of the debate on Asperger’s. Here is the e-mail and also my response.
Dear G,
I wanted to respond to your blog but I didn't want to sign up for a Google account, so since I know the author personally I thought I'd just share my thoughts with you. I hope nothing I say will offend you as I do not have any first hand knowledge of Asperger's Syndrome except that I am a teacher familiar with a range of conditions. My own child had an IEP all throughout her school years. She was/is a stutterer and while it is dramatically different than what you are dealing with, I know the heartache a parent can have when their child is not "like everyone else."
Since this blog entry was related to a TV show, I was reminded of another show I recently watched, some doctor show where the dad was in denial about his 11 year old daughter’s schizophrenia. He felt like he caused it. I immediately go there whenever my children have any kind of flaw. I assume they must have gotten it from me.
I wonder if there has ever been any studies on the parents of Asperger Syndrome kids and any connection to high intelligence. I always suspected you were pretty smart. (They told us in our teacher classes that Bill Gates had Aspergers).
Aspergers Syndrome was never even a diagnosis back when we were kids was it? And if it wasn't and kids still had it but it wasn't diagnosed as such, didn't the kids simply grow up and get on with life the best they could. Wasn’t it kind of like before ADD/ADHD kids were diagnosed and put on meds?
I'm not trying to minimize your son's condition in anyway but sometimes I think that maybe labeling kids with these diagnoses might make the parents and the kids feel worse. These names are so powerful. As a teacher I see kids with psychological and physical limitations but I can tell you that I have always tried to see the child as a person and not as their condition and hopefully your son's teachers can do that as well.
Bea,
Dear B,
I would not be offended by anything you might say in a considered discussion. I understand the label issue you have raised and it is one we considered long and hard before getting involved with the whole machine of psychologists/ASD consultants, diagnoses, etc.
In a way we were forced to make the choice we did due to the strains on public education here in Michigan. Without a diagnosis the chances were quite strong that Primus would simply be considered a troubled child and shunted to the edge of the mainstream. It was already happening when we took action. We know and his SAT scores show (he scored median for college bound high school seniors when he took that test in seventh grade) he is a bright kid.
I make the above comment about being shunted aside without reservations as to the accuracy of the statement. Primus had begun demonstrating very clear and evident ASD traits in the second grade. However despite what was supposed to be an intervention with a school social worker (who I have since been told had been trained on ASD issues) not a word was said to us about larger issues beyond shyness that might exist for him.
The intervention which was ostensibly to try and aid him building social connections, something it was evident he did not care about. The intervention brought out no referral or suggestion for an evaluation for a condition like ASD. Other issues tied to the disorder were clearly evident at that time. A review of our notes from past parent teacher conferences show that symptoms were being referenced by his teachers that nobody in the school social work/psychologists office thought to tie together.
Every one in the system was more than happy to leave him to fend for himself despite problems with auditory stimulus, limitations with fine motor skill function, extreme clumsiness and grand scale social ineptness. I have since had contact with others in the district that have alerted me that become of economics involved in working with disabilities the schools do not want to find a diagnosis of Aspergers if it can at all be avoided; it is costly.
The way we became aware of ASD was though my wife. One day as my spouse who works at Michigan State University for the Dean of one of the colleges was sorting through prof-net queries (queries seeking thoughts on scientific questions sent out to universities all over the place) to forward on to different faculty she came upon one researcher who was seeking learned comments on why the Aspergers syndrome in boys was growing at such a rapid rate. Wondering what Aspergers was she then looked up the parameters of the diagnosis and brought it to me. Looking at what she found and how closely it aligned with our son’s behaviors I agreed we should get him evaluated. The psychologist we eventually found told us he hit the diagnosis on all measures.
We then called the school and asked to set up an evaluation for an IEP. There response was that they would contact us at a later time. We waited and we waited. At that point I did my legal research and figured out that without a written demand the school would not have to act. Post haste I sent the demand letter that sets the time limits for conducting the review. It is reasonably certain he school would not have moved forward without that little certified letter. When they did the review not a single drafter of the seven reports the school district created did anything other than acknowledge the condition.
Since the IEP has been in place we have been able to deal with issues that would have caused Primus endless grief and bad grades in the past. One teacher last year insisted on giving him assignments that repeatedly called for him to place himself in the shoes of another and write about their emotions. Duh, we kept writing her e-mails indicating that Aspergers kids are not tied into this level of emotion so as to be able to write at length on issues of sympathy and empathy. Without the intervention of the advocate the teacher was hell bent on flunking him because he would not do this kind of work. We asked the teacher if he could do technical reports or more straightforward book reviews before getting the advocate involved. We were rebuffed and she was having none of it. The advocate then stepped in and took over and created the writing assignments.
In our day in school, in our more rural than not environment, a good caring teacher could read these differences in children and work out a way to bring along a kid who had special needs and unique talents to a point that their life would matter. In a urban environment where the curriculum is driven by the no test not taken standard there is no margin that will allow a teacher to do that kind of thing. Without the club that the label is and without the sanctions that follow from not following an IEP my child would have been written off as a troubled and troublesome ass.
Forgive me if I sound a little hostile toward my district the experience has truly been a mixed bag. I have worked with some very good people in our system here. However I think the state of education in Michigan is such that economics drive decisions about child welfare. It is in every administrator’s best interest to avoid the costs associated with IEPs.
You mention the comment I have heard often about why there is such prevalence now of this disorder as opposed to when we were in school. Two or three things come to mind. One is that with the growth of psychological and the empirical studies of behavior we have broken down that much larger class of behaviors that we used to define as “different” behaviors. We can separate things out that used to be lumped together. Second I believe that our environment has impacted us in ways that with the more concentrated toxicity manifests more readily. Hey I have heard you say in our posts, that you believe there is something in the Delaware Valley that causes physiological issues. You had the onset of your illness in your twenties. I had prostate cancer at 50 which is really young for that malady to show up. Do I blame the DuPont stench, well maybe. Could the crap we inhaled as teens have impacted our genes and cells so that it has altered the next generation, well definitely maybe.
I am not an advocate here for anyone but my son. But what I know is that in our case the label has helped more than hurt.
There is a point to your comments. It is clear that you care for kids in your charge and other kids dealing with the academic process. I am sure every single day you are engaged in a balancing act with regard to each child you interact with. With all the labels and programs and requirements sometimes you wish it could be resolved in a simpler more holistic way. Me too. But our world is not the world we lived in as kids when a look from a seasoned gym teacher would stop a kid dead in his tracks or a caring history teacher would pull you aside and work with you.
Our society as a whole outside of engineering doesn't have places for the socially inept but technically skilled anymore. We are too wired a world for that. With Facebook and cameras on every phone the awkward are at risk. I digress.
Sincerely,
G
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