How do I tell my son about his aspergers?greenspun.com : LUSENET : Asperger Adult Resources : One Thread
Help! I have a 15 year old with aspergers, or at least I am 99 percent certain. This condition seems to run in my family. Unfortunately my son, who has dropped out of school, has been misdiagnosed a half dozen times (or told there is "nothing wrong"). Finally I found a psychologist who would listen to me, but she says I can do nothing for him at this point. I can't agree with or accept that cynical assessment. I am grateful that his symptoms are more mild than some; on the other hand, this may be why they have been overlooked time and time again by well-meaning professionals. Suddenly I understand, but I cannot hlpe him until HE understands that there is a problem! This would not be so important if he were going to school. He is being home-schooled, but he needs more educational, social, and emotional support than I can give him myself, so he is slipping further and further behind educationally and socially and withdrawing more and more. How do I tell him he has aspergers (or something similar), and that he must make yet another round of trips to specialists to find out the details and get help? He refuses to listen and denies that there is anything wrong, no matter how gently I try to approach the subject.
-- Susanna Priest (firstname.lastname@example.org), October 16, 1999
Your message raises a lot of issues that parents of teens and young adults with AS and related disorders face. Of first importance, I think, is the issue of proper diagnosis. You mention a psychologist who has listened to you but apparently your son does not have a formal AS diagnosis. I would suggest that obtaining a full evaluation, taking into account the possibility of AS or a related disorder, is a top priority. That requires the services of an appropriate professional who is knowledgeable concerning the disorder. Next, assuming that AS or a related disorder is diagnosed, is the issue of what you tell your son. At his age, of course, the evaluative process will be a very clear indicator by itself that you think that he has such a condition. One approach that you might try is to print out some of the wealth of information on the Internet and suggest that he read it. There are a number of individuals who self- identify as having AS or a related disorder who maintain internet sites, and he may relate more easily to their accounts of their lives than to your trying to directly tell him anything. One such site is "On the Same Page" at http://amug.org/~a203/intropage.html maintained by Martijn Dekker, along with some other individuals.Yet another important effort would be to find a support organization in your area through which both you and he could meet other families who are dealing with the same issues. There are quite a number of local support organizations, while only a few specifically deal with adolescent and adult issues, it would still be a good idea to get involved with a support group regardless of that focus. In sum, it may be easier for your son to relate to other individuals who are diagnosed with AS or a related disorder, than to accept in the abstract the idea that he has a "condition" or "syndrome" that neither he nor anyone else he knows has ever heard of. Lastly, keep in mind that your son is a teenager and he can be expected to act like a teenager. (Not listening to parents, for example.) One of the most difficult things with which our family has tried to deal over the course of our son's life (he is now in his early 20's) is trying to distinguish between normal behavior and AS-affected behavior. Sometimes he is difficult because he is just difficult, not because of any particular disorder he may have. I hope this answer has been of some help to you. Good luck with your son. Maureen
-- Maureen E. Garde (email@example.com), October 16, 1999.
Maureen--Apparently I didn't make myself entirely clear, much as I appreciate your trying to help (and thanks for doing so!). I do think it might help if he read something other young adults with these problems have written, and I will pursue that if I can. But please read on. There is no evaluation because my son will not get one. Since he was dragged to so many specialists when he was younger, with no useful results, I can hardly blame him. Some of this was before the 1994 DSM even came out. Nevertheless, there are clear patterns in his history and test results that indicate this problem; these patterns have been obvious to specialists I have consulted by phone. Without an official DX, however, the school district only wanted to send him to court for truancy, so instead he is being home schooled. They absolutely do not understand his difficulties tolerating their "normal" environment full-time, especially since his test scores are usually "ok." They seem to think he needs a "cheerleader" or talk therapy, and then everything will be fine. They speak as though they believe the problem must be that I have never explained to my son the value of school. I am a college professor, of course I have spoken to him about the value of school!! It makes me furious. Further, we live in a relatively small and isolated town, and I would have to travel at least 100 miles to find an appropriate specialist and get a good eval done. My doc refuses to help because she says she knows nothing about these conditions. The school thought it would be good to put him on anti-anxiety medication but I am not sure; anyway, without the doc's help that is not even an option. There are a couple of small private schools in this area, but they do not understand kids who are "different" (learning disabilities, etc.). I understand your point about normal teenage stuff, and there are strong arguments against making him accept some kind of wierd diagnostic label, but I also do not think it is a good idea to let a 15 year old decide he should waste several years of his life with no school, no job, etc. Eventually he will get into serious trouble (emotional, legal, behavioral), as would any "normal" teen in similar circumstances, i.e., without any real structure or purpose in life for months on end!! Again, I do agree that it would be good if he were to read some of the Web info or some of the books that are available, and I will try to pursue this, but it is very likely he will only ignore it all because it "doesn't apply to him." He is certainly not motivated to seek it out. Since he does not understand why he "hates school" (probably the crowd and confusion are simply beyond what he can tolerate/process without excessive stress), we are at a standstill. I realize no one will have an immediate solution, but I wanted to make sure you understood the problem.
-- Susanna Priest (firstname.lastname@example.org), October 16, 1999.
Gosh I would have LOVED to learn that there was something wrong with me at 15! I could not figure out why I was this huge target for bullying and always had been, and the days I couldn't weasel out of school were spent sitting in the Special Ed class I was in, stimming all day! I am SO glad to have finally found out about this now, it clarifies so much of my life!! I don't seem to be good at looking at myself from the outside, didn't even know the concept until I was 12 or so, and even as an adult, do stupid things that reveal a lack of awareness of what I look like, act like, or sound like, and also a lack of awareness of whether another person is interested, annoyed, etc. It's a real punch in the gut learning what stims are and that I stim, what perseveration is and that I perseverate, what mindblindness is and that I have it concerning the "higher" levels, etc. But, this is a HUGE improvement in my life in that now, finally, I can work on correcting my behaviors, understanding them, and no longer am I having these theories that it's my height, or that I'm dressing wrong or something, or simply that everyone else is a jerk. The closest thing I can think of to this is diabetes, if you have diabetes, you learn about the condition, what sets it off, how to eat, etc. You learn to give yourself shots or regulate your diet and keep candy around, whatever you have to do. No one thinks that's unusual at all. Well, it seems to me like if you have Asperger's you should do the same thing, get to be knowledgeable about Asperger's and in that way get to see yourself from the outside and learn to modify your behavior so you can fit into society better, which will help you get your goals. One BIG problem is that I score really high on IQ tests, blow most Mensa members down the road, but those tests only measure SOME things. So, I was considered "normal" because I could use long words and figure mechanical stuff out. There's MUCH more to human life than that! Even if I might not want to participate in all of the emotional stuff, or even be able to percieve some of the emotional stuff, I do need to learn about it so I don't annoy people and hurt my chances of achieving my goals. At least I can learn about it in a rule-based way, which I was doing the "hard way" but learning I have Asperger's is really accelerating the process and keeping it on the right track!
These are some books I'm finding really useful:
Asperger's Syndrome - A Guide for Parents and Professionals by Tony Attwood Autism: Explaining The Enigma by Uta Frith Autism and Asperger's Syndrome by Uta Frith Mindblindness by Simon Baron-Cohen Asperger's Huh? - this is for kids, I haven't gotten it yet and the cover illustration bugs me but I've heard it's good!!
All of these books are well worth the "price of admission" which runs about $20 each, also, libraries are starting to get them too.
-- Alex Carter (email@example.com), February 20, 2000.
I am starting to wonder if maybe I have AS. I know I have always been a neat freak, and a rigid scheduler, but I thought that it was just my exceptional organizational skills. I am social (or at least I want to be), yet I have a hard time relating to people and difficulty telling them what they want to hear. I talk about things that I regret, and have to cue myself not to say certain details; and yet find myself blurting out those very details that I told myself not to talk about. My husband and I joke that we are autistic...(since we have the bad habit of repeating movie lines-esp. around people who don't seem to know what we are talking about!) I feel that I am a little cold and calloused. Maybe Susanna, you need to let your son come to the revelation on his own like I seem to be doing right now. I am on this site for the sake of my 7 year old son Alex; but as I read responses of other Aspies, I am thinking to myself, he sounds normal....what could be his symptoms???? I feel somewhat normal. Are my symptoms enough to classify me as AS. I will be asking myself these questions repeatedly I am sure, and probably never know the answer. At any rate, it is nice to see others out there that are quesioning also. Angie
-- Angelika Radermacher (Angelika@radermacher.com), February 24, 2000.
I agree that you shouldn't allow a 15 year old to decide he should waste several years of his life. 100 miles doesn't sound like a long way for an evaluation and recommendation. Don't give him a choice in the matter. Also, my opinion (and I'm not a doctor or a teacher), is that home schooling might get the academics taken care of but I think that will just prolong the difficulties with his social learning. Have you heard of "The Source for Nonverbal Learning Disabilties" by Sue Thompson? and "Social Stories" by Carol Grey. Both are available from Future Horizons Publishers (817) 277-0727. If he goes back into the public school system, both of these books, give his teachers some concrete ways to help him. Hopefully you too. Also the old Zig Zigler book "How to Make Friends and Influence People" may help your son with looking at things from the other persons perspective. This book intellectualizes social customs with some rule-based suggestions. Zig was way ahead of his time and probably didn't even know how broadly his book could be applied.
-- Lyn Woods (Lyn@Woods.ch), June 09, 2000.
UNIVERSITY OF WISCONSIN HOSPITAL AND CLINICS KEN MACK, MD, PH.D. DEPT. OF NEUROLOGY 600 HIGHLAND AVENUE MADISON, WI 53792 608-263-5430
MAYBE THESE PEOPLE CAN HELP YOU OUT, MAYBE REFER YOU TO SOMEONE IN YOUR AREA. NOW THAT I KNOW MY SON HAS ASPERGER SYNDROME, WE CAN EDUCATE OURSELVES AND DEAL WITH IT. WISH YOU THE BEST, I KNOW ITS NOT EASY.
-- cindy mueller (firstname.lastname@example.org), March 15, 2001.