Aspie Digest - October 5, 2005
Links
A very informative blog, lots of links - Marc's Autism - Asperger's Syndrome Blog
Here are a few mailing lists that my friends have told me about. I haven't subscribed to any of them yet.
http://maelstrom.stjohns.edu/archives/tagpdq.html
http://gtworld.org/ (select GT-Special from menu on the left)
Sometime soon, I'm going to add a new section to my sidebar and put all the links in there. I also want to create a TOC for this Digest (if it lasts long enough).
Currently Reading
Harry Potter books... oops. See my previous post. I blame it all on... you know who you are!
Quote of the Day
"Attwood (1998) described the thinking associated with AS as "different potentially highly original, often misunderstood, but not defective" (p.126). More recently, Temple Grandin has suggested that if we got rid of the genes that caused autism, we'd also be getting rid of many of the gifted and talented people like Einstein. She goes on to suggest that the really social people are not the ones who make new discoveries; they are too busy socializing (Attwood and Grandin 2000)".
"Different Minds", p. 223
Question of the Day – "Why do you want to change me?"
Figured I'd start asking questions, because a lot of people coming to this blog have a lot more experience with AS than I do and it wouldn't hurt me to ask for their advice!
Last week, when I was telling I12 about the Locally Famous Therapist and how I'm going to try and sign him up, he asked, "Mom, why do you want to change me?"
I had no idea what to say to this.
"I don't want to change you, I12. I just want you to have work skills and social skills. Look at you, you have no friends."
"So? I'm happy about it. I don't want any friends anyway."
"Okay, but what about your work skills? Just look at your grades!"
"So? I'd get all As if I wanted to. But I don't want to, because they don't count towards my GPA yet. So getting all As right now would be a useless waste of time."
"You think you can start getting all As tomorrow if you wanted to, but you can't. Because you don't have work skills. You don't know how to organize your work. And you need to have communication skills. You need to know how to put things in writing so other people understand what you're saying."
"That's where you're wrong, Mom. I can do all these things. I just don't want to. Or else they're not important."
What would you say? My son thinks that I am trying to change him into something he's not, against his will. He claims he's happy just the way he is. Any ideas?
Eventually I told him, "I want people to see you for what you really are, and you are not helping."
"What am I?"
"Smart. Funny. Interesting," I told him.
Right now, they just see a strange kid with horrible handwriting that never talks to anybody. I want them to see what I see when I look at I12. But I think that would require some social skills classes and some therapy for him. Am I right? What would you say if you were asked this question?
My next question: selective memory.
How to Get Your Kid Diagnosed When Everything Is Working Against You
(ZeroBoss will help)
In the last installment, I wrote about how I decided to get I12 tested for AS. When his school called me saying that they were too wondering if he had it, I decided it was time to act. I joined a mailing list for our local chapter of Autism Society, and asked for referrals. Very soon I had a name (yes it was the Locally Famous Therapist). She had great reviews; she was ten minutes away from our home; and she took my insurance! I called the office; they asked me if my son had a diagnosis; I said no; they gave me a phone number to schedule a neuro-psychological assessment. I called the number and made an appointment.
All of this took about three days. Now for the difficult part. I had to call my insurance and find out if they would cover the assessment. They told me they would, but they needed a referral. Oops. My insurance is an HMO. I called I12's pediatrician. He'd had her for a little over a year and she is a very nice person, but, as I was about to find out, it is very hard to get a referral from her.
I was told that I had to come in for an appointment with my son. I took I12 out of school. We came in. The doctor was asking a lot of questions and I pretty much ended up telling her I12's whole life story. This took about an hour, and I said a lot more than I had ever wanted this doctor to know about I12's past.
Then she told me that I didn't know what I was doing, she didn't like the way I was going about it, I12 did not need a neuro-psych appointment, and concluded by handing me a phone number of the therapist I was to visit instead. Oh, well. I didn't have the two thousand dollars for the neuro-psych, so I had to call and cancel it. I also had to remove I12 from the Locally Famous Therapist's waiting list.
When I went to see the new therapist, I brought with me a Word document where, on four pages, I described the problems I12 had been having since he was born. I started with:
"The reason why I am in your office today is that my son's school has advised that I get psychological help for my son. My son's name is I12, he was born on **** and he goes to **** Middle School. I agree with the school that there is very likely something wrong with I12 that needs to be assessed, as it is affecting his life. The school is concerned because his grades have dropped and he has no friends. I am concerned because I believe he has high potential and I want him to realize that potential in his life, however, at this point, the psychological problems that he possibly has seem to be preventing him from living up to his full potential. Also, in his elementary school, the teachers did not understand him and made some pretty serious accusations regarding him and his family. I don't want that to happen again. Ideally, I'd like a full assessment done on I12 so we can determine what it is he has and then act accordingly, as well as notify the school so they don't have to make anymore guesses. Or maybe he just needs to be in a different school or skip a grade (? - I'm grabbing at straws here) and we don't know it. I'm hoping that you and I can work together towards that goal."
And I concluded with:
"I12 is in 6th grade now. He's changing a lot and going through some intense growth spurts; his voice has changed. He talks in a mechanical voice with no expression at all. He avoids looking people in the eye or making physical contact. He hardly comes out of his room and hardly ever talks to us. Sometimes when he's in the mood, he talks to me about general issues in the world, etc. This is a positive change from before, because when he was younger, he used to just talk at me about whatever interested him (programming or computer games or electronics), not caring whether I was interested or whether I even understood anything. From my standpoint, he's become more compliant and even his hygiene habits have started to improve. IOW as a parent, I see an improvement from the previous years. He doesn't however have any friends at all, not even online and that bothers me. He used to post on a forum, but a month or two ago, he stopped because he started playing an online RPG, and he hasn't gone back to the forum. (Update - He's on a new forum now. Yay for Newgrounds BBS, home of the nerds and geeks and social misfits! - and yes, I am also a registered member, otherwise why would I be saying this?) Another thing that bothers me is, he doesn't see the point in language arts, social studies, and other humanities, and it is very hard to convince him to make an effort in these disciplines. He thinks it's a waste of time. He refuses to do any sports (again, waste of time). He is very good at logic and, if he decides on something, it is impossible to convince him otherwise. For a while I suspected that he may have Aspergers, because he doesn't understand people and doesn't know how to connect to them. Whatever he has, I want to find out what it is and how I can help."
The new therapist turned out to be very good (yes I asked around before coming to see him). He took the time to read the document, and assured me that they would assess I12. He then handed me over to one of his associates, Dr.2005, whom we continued to see for the rest of the year. That was in February. To this day, Dr.2005 has not read, or even tried to read, this document that I had put together for him. To me, this speaks volumes. Although, I have to say that I like Dr.2005. He must be very good with teenage kids; he's very smart, logical, and well-read. (Hey, we may still have to go back to him if my insurance fails to cover the LFT!) But with I12... well. Dr.2005 tried to talk to I12, reasoning with him. Problem was, whatever he was saying, I12 did not listen, because, well, he doesn’t know how. Dr.2005 gave I12 a daily schedule, listing things like "Reading", "Dinner with family", and "Exercise", and asked him to check off the things he'd done on time. Two weeks later, I12 brought the schedule back, with two kinds of entries in each column: "I forgot" and "I forogt". ("But why didn't Goldie remind her kid to do all these tasks?" - trust me, I did, about two dozen times a day. He "forogt" anyway).
At our initial meeting, Dr.2005 agreed that he would test I12. Somehow at our later visits, he stopped bringing that up. Three months went by, and I was about to give up, when suddenly, help arrived from Jen. I had written a story for Blogging for Books. The story made the top seven, so I got a lot of hits and comments. But what Jen also did was email me, asking if, by any chance, I12 had AS. I replied, "I strongly suspect that he does, but I'm afraid I will never find out - the doctor just wouldn't test him, no matter how I try." Jen gave me a few helpful tips on how to proceed. The timing was perfect - we had to see Dr.2005 the next day.
I asked Dr.2005 if I could talk to him in private.
I started by asking how I12 was doing; what, in Dr.2005's opinion, was wrong with I12; and whether he had ever considered having I12 tested.
Dr.2005 was not happy.
"What, do you want a slap a label on him?"
I looked him straight into the eyes, gave him my sweetest smile, and said, "Yes, please!"
Dr.2005 was puzzled. I continued:
"I'd like to tell you about the strangest thing that happened to me this week. You see, I posted a story on my website, about I12's early years. And all of a sudden, I get this email from a person asking me if my son has Aspergers."
That somehow changed everything. Suddenly, Dr.2005 was all in favor of testing I12. Thank you, Jen!
In June, Dr.2005 had I12 tested. He was going to call me with the results, but in reality, I had to wait two months and then give him a call. But I don't hold that against him, because he did write a report and give the diagnosis. The report says PDD-NOS, because one symptom is missing - I12, it says, does not have any special interests that would occupy most of his time. I do not think I agree with that, but I think we can discuss this later with whomever I12 continues to see. The important part is, we got the diagnosis we needed. Need I tell you that I called the LFT (you know... Locally Famous Therapist) as soon as I came home, to get back on the waiting list. And yesterday, I managed to schedule an appointment with her for early December. There are some insurance problems, though, so please keep your fingers crossed.
In the next installment (scratches head)... well, I could tell you why I think I12 does have special interests. Yes, I'll talk about that. Thank you for staying with me so far.
A very informative blog, lots of links - Marc's Autism - Asperger's Syndrome Blog
Here are a few mailing lists that my friends have told me about. I haven't subscribed to any of them yet.
http://maelstrom.stjohns.edu/archives/tagpdq.html
http://gtworld.org/ (select GT-Special from menu on the left)
Sometime soon, I'm going to add a new section to my sidebar and put all the links in there. I also want to create a TOC for this Digest (if it lasts long enough).
Currently Reading
Harry Potter books... oops. See my previous post. I blame it all on... you know who you are!
Quote of the Day
"Attwood (1998) described the thinking associated with AS as "different potentially highly original, often misunderstood, but not defective" (p.126). More recently, Temple Grandin has suggested that if we got rid of the genes that caused autism, we'd also be getting rid of many of the gifted and talented people like Einstein. She goes on to suggest that the really social people are not the ones who make new discoveries; they are too busy socializing (Attwood and Grandin 2000)".
"Different Minds", p. 223
Question of the Day – "Why do you want to change me?"
Figured I'd start asking questions, because a lot of people coming to this blog have a lot more experience with AS than I do and it wouldn't hurt me to ask for their advice!
Last week, when I was telling I12 about the Locally Famous Therapist and how I'm going to try and sign him up, he asked, "Mom, why do you want to change me?"
I had no idea what to say to this.
"I don't want to change you, I12. I just want you to have work skills and social skills. Look at you, you have no friends."
"So? I'm happy about it. I don't want any friends anyway."
"Okay, but what about your work skills? Just look at your grades!"
"So? I'd get all As if I wanted to. But I don't want to, because they don't count towards my GPA yet. So getting all As right now would be a useless waste of time."
"You think you can start getting all As tomorrow if you wanted to, but you can't. Because you don't have work skills. You don't know how to organize your work. And you need to have communication skills. You need to know how to put things in writing so other people understand what you're saying."
"That's where you're wrong, Mom. I can do all these things. I just don't want to. Or else they're not important."
What would you say? My son thinks that I am trying to change him into something he's not, against his will. He claims he's happy just the way he is. Any ideas?
Eventually I told him, "I want people to see you for what you really are, and you are not helping."
"What am I?"
"Smart. Funny. Interesting," I told him.
Right now, they just see a strange kid with horrible handwriting that never talks to anybody. I want them to see what I see when I look at I12. But I think that would require some social skills classes and some therapy for him. Am I right? What would you say if you were asked this question?
My next question: selective memory.
How to Get Your Kid Diagnosed When Everything Is Working Against You
(ZeroBoss will help)
In the last installment, I wrote about how I decided to get I12 tested for AS. When his school called me saying that they were too wondering if he had it, I decided it was time to act. I joined a mailing list for our local chapter of Autism Society, and asked for referrals. Very soon I had a name (yes it was the Locally Famous Therapist). She had great reviews; she was ten minutes away from our home; and she took my insurance! I called the office; they asked me if my son had a diagnosis; I said no; they gave me a phone number to schedule a neuro-psychological assessment. I called the number and made an appointment.
All of this took about three days. Now for the difficult part. I had to call my insurance and find out if they would cover the assessment. They told me they would, but they needed a referral. Oops. My insurance is an HMO. I called I12's pediatrician. He'd had her for a little over a year and she is a very nice person, but, as I was about to find out, it is very hard to get a referral from her.
I was told that I had to come in for an appointment with my son. I took I12 out of school. We came in. The doctor was asking a lot of questions and I pretty much ended up telling her I12's whole life story. This took about an hour, and I said a lot more than I had ever wanted this doctor to know about I12's past.
Then she told me that I didn't know what I was doing, she didn't like the way I was going about it, I12 did not need a neuro-psych appointment, and concluded by handing me a phone number of the therapist I was to visit instead. Oh, well. I didn't have the two thousand dollars for the neuro-psych, so I had to call and cancel it. I also had to remove I12 from the Locally Famous Therapist's waiting list.
When I went to see the new therapist, I brought with me a Word document where, on four pages, I described the problems I12 had been having since he was born. I started with:
"The reason why I am in your office today is that my son's school has advised that I get psychological help for my son. My son's name is I12, he was born on **** and he goes to **** Middle School. I agree with the school that there is very likely something wrong with I12 that needs to be assessed, as it is affecting his life. The school is concerned because his grades have dropped and he has no friends. I am concerned because I believe he has high potential and I want him to realize that potential in his life, however, at this point, the psychological problems that he possibly has seem to be preventing him from living up to his full potential. Also, in his elementary school, the teachers did not understand him and made some pretty serious accusations regarding him and his family. I don't want that to happen again. Ideally, I'd like a full assessment done on I12 so we can determine what it is he has and then act accordingly, as well as notify the school so they don't have to make anymore guesses. Or maybe he just needs to be in a different school or skip a grade (? - I'm grabbing at straws here) and we don't know it. I'm hoping that you and I can work together towards that goal."
And I concluded with:
"I12 is in 6th grade now. He's changing a lot and going through some intense growth spurts; his voice has changed. He talks in a mechanical voice with no expression at all. He avoids looking people in the eye or making physical contact. He hardly comes out of his room and hardly ever talks to us. Sometimes when he's in the mood, he talks to me about general issues in the world, etc. This is a positive change from before, because when he was younger, he used to just talk at me about whatever interested him (programming or computer games or electronics), not caring whether I was interested or whether I even understood anything. From my standpoint, he's become more compliant and even his hygiene habits have started to improve. IOW as a parent, I see an improvement from the previous years. He doesn't however have any friends at all, not even online and that bothers me. He used to post on a forum, but a month or two ago, he stopped because he started playing an online RPG, and he hasn't gone back to the forum. (Update - He's on a new forum now. Yay for Newgrounds BBS, home of the nerds and geeks and social misfits! - and yes, I am also a registered member, otherwise why would I be saying this?) Another thing that bothers me is, he doesn't see the point in language arts, social studies, and other humanities, and it is very hard to convince him to make an effort in these disciplines. He thinks it's a waste of time. He refuses to do any sports (again, waste of time). He is very good at logic and, if he decides on something, it is impossible to convince him otherwise. For a while I suspected that he may have Aspergers, because he doesn't understand people and doesn't know how to connect to them. Whatever he has, I want to find out what it is and how I can help."
The new therapist turned out to be very good (yes I asked around before coming to see him). He took the time to read the document, and assured me that they would assess I12. He then handed me over to one of his associates, Dr.2005, whom we continued to see for the rest of the year. That was in February. To this day, Dr.2005 has not read, or even tried to read, this document that I had put together for him. To me, this speaks volumes. Although, I have to say that I like Dr.2005. He must be very good with teenage kids; he's very smart, logical, and well-read. (Hey, we may still have to go back to him if my insurance fails to cover the LFT!) But with I12... well. Dr.2005 tried to talk to I12, reasoning with him. Problem was, whatever he was saying, I12 did not listen, because, well, he doesn’t know how. Dr.2005 gave I12 a daily schedule, listing things like "Reading", "Dinner with family", and "Exercise", and asked him to check off the things he'd done on time. Two weeks later, I12 brought the schedule back, with two kinds of entries in each column: "I forgot" and "I forogt". ("But why didn't Goldie remind her kid to do all these tasks?" - trust me, I did, about two dozen times a day. He "forogt" anyway).
At our initial meeting, Dr.2005 agreed that he would test I12. Somehow at our later visits, he stopped bringing that up. Three months went by, and I was about to give up, when suddenly, help arrived from Jen. I had written a story for Blogging for Books. The story made the top seven, so I got a lot of hits and comments. But what Jen also did was email me, asking if, by any chance, I12 had AS. I replied, "I strongly suspect that he does, but I'm afraid I will never find out - the doctor just wouldn't test him, no matter how I try." Jen gave me a few helpful tips on how to proceed. The timing was perfect - we had to see Dr.2005 the next day.
I asked Dr.2005 if I could talk to him in private.
I started by asking how I12 was doing; what, in Dr.2005's opinion, was wrong with I12; and whether he had ever considered having I12 tested.
Dr.2005 was not happy.
"What, do you want a slap a label on him?"
I looked him straight into the eyes, gave him my sweetest smile, and said, "Yes, please!"
Dr.2005 was puzzled. I continued:
"I'd like to tell you about the strangest thing that happened to me this week. You see, I posted a story on my website, about I12's early years. And all of a sudden, I get this email from a person asking me if my son has Aspergers."
That somehow changed everything. Suddenly, Dr.2005 was all in favor of testing I12. Thank you, Jen!
In June, Dr.2005 had I12 tested. He was going to call me with the results, but in reality, I had to wait two months and then give him a call. But I don't hold that against him, because he did write a report and give the diagnosis. The report says PDD-NOS, because one symptom is missing - I12, it says, does not have any special interests that would occupy most of his time. I do not think I agree with that, but I think we can discuss this later with whomever I12 continues to see. The important part is, we got the diagnosis we needed. Need I tell you that I called the LFT (you know... Locally Famous Therapist) as soon as I came home, to get back on the waiting list. And yesterday, I managed to schedule an appointment with her for early December. There are some insurance problems, though, so please keep your fingers crossed.
In the next installment (scratches head)... well, I could tell you why I think I12 does have special interests. Yes, I'll talk about that. Thank you for staying with me so far.
