Recommendation on how to convey diagnosis?

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dluds
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07 Dec 2010, 12:30 pm

Hello,

Does anyone have any recommendations on the best approach to convey diagnosis on Asperber's? I want to make sure he doesn't get discouraged, and disengage with school, friends or family. Should I wait for the weekend or during winter break? I was considering trying to speak to him in person, and then follow-up with email so he can read more about it with recommendations on books and maybe this site?

The doctor recommended discussing with counselor, but my son refused to go since they mainly dealt with younger kids. My son is 17, and is a senior in high school. He shuts down (does not talk and looks away) when I try to discuss topics he does not want to hear about such as school work or college applications.

I started to talk to him about the findings of the diagnosis in the past, but he said he didn't want me to talk to him about it. However, I think it is really important now for him to understand how he is unique, and ways to deal with it. He is very bright in areas that interest him such as programming, math, music (drums), but has a lot of difficulties with less tangible topics.

Thanks!



RaquiGirl
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07 Dec 2010, 1:04 pm

As an AS adult, my suggestion is to just flat out tell him the diagnosis, give him a list of resources he can research on his own... including this website, and let him know you think it's a positive thing, remind him of all his positive qualities and tell him that you love him and would be happy to talk more about it with him if he wants to. Then back off and give him time to research and process on his own.


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07 Dec 2010, 1:06 pm

RaquiGirl wrote:
As an AS adult, my suggestion is to just flat out tell him the diagnosis, give him a list of resources he can research on his own... including this website, and let him know you think it's a positive thing, remind him of all his positive qualities and tell him that you love him and would be happy to talk more about it with him if he wants to. Then back off and give him time to research and process on his own.


I would agree



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07 Dec 2010, 2:33 pm

I am strongly against DX and your son maybe right to refuse talking to you about the issue. I could never explain my mother and she couldn't comprehend my methods like whay I choose a career that I did. I am trying to say that your son has managed till now so he sounds pretty capable to steer his own life. DX is demeaning in my opinion since it assumes to predict a persons behavior while actually people that have it are so very different. In my sons case people give themselves lots of liberty to assume his diagnosis and even his future based on totaly superficial assumptions just because they think they know his "condition". In the a society where everything is short, one can not take time for people to know him so they can figure it out. Also for very inteligent and unique personalities this may be extremly hard anyway.



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07 Dec 2010, 3:14 pm

Get him the book Genious Genes:How Asperger's Talents Changed the World for Christmas.



dluds
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07 Dec 2010, 3:26 pm

RaguiGirl and MidlifeAspie - Thanks for the feedback!

AnotherOne - Thanks for the reply too. I have been taking the approach of offering insight to help him with the areas he finds difficult, but he is reaching a stage in his life where he needs to be more independent and may require more outside help.

Schools will not provide help without a diagnosis, and the current high school agreed not to discuss the diagnosis with my son. However, I don't think this would be possible at College.

Do people with Asperger's feel the diagnosis is demeaning? Or do they feel relieved there is some understanding of why they are unique?

My son's friends have known him since starting grade school so they know his unique personality traits, and are still great friends.

Thanks!



RaquiGirl
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07 Dec 2010, 3:44 pm

dluds wrote:
Schools will not provide help without a diagnosis, and the current high school agreed not to discuss the diagnosis with my son. However, I don't think this would be possible at College.

Do people with Asperger's feel the diagnosis is demeaning? Or do they feel relieved there is some understanding of why they are unique?


As for college, I was recently diagnosed in the middle of a school term and they do provide additional accommodations for things like extra testing time, quieter, more relaxed testing environments and I get to take a pass on group assignments if I want to. If you give him the information you have been given about his diagnosis, you can let him read it, interpret it and then ask questions about what it means... that will empower him to take control of his education and choose which of the suggested help he wants to take advantage of.

I am 37 and was just diagnosed. I was relieved and didn't find it demeaning at all, but I'm also not 17 anymore and I can't say honestly how I would have felt if I'd found out then because it was so long ago. I think what would make me feel badly about it is not the diagnosis itself, but how other people handled it, like "Another One" suggested. The biggest and hardest lesson as a teenager might be how to choose who to tell and who not to tell and why. And some of those lessons might be harder and more painful to learn than others. Unfortunately, you won't be able to protect him from all of those experiences, and he'll have to learn that on his own. My feeling is that it's better for him to know now than have to deal with it later.

The biggest shift for me has been the feeling that I now have a reason for how I behave in the world, not an excuse. Once I was able to shift from one to another, it was easier to help others to understand the difference, and let go of the comments people make when they can't figure it out. That's not to say that, as an Aspie in an NT world, I expect others to adjust to me. That's far from true, but I do need to make people aware that it's as hard for me to understand their world, as it is for them to understand mine.


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07 Dec 2010, 3:50 pm

dluds wrote:
Do people with Asperger's feel the diagnosis is demeaning? Or do they feel relieved there is some understanding of why they are unique?


Relieved here, and I had to wait 34 years to finally understand myself. I have not heard of many people who thought a diagnosis was demeaning, but AnotherOne above does seem to feel that way so obviously it must be different for everybody. Personally, I would have much preferred "Aspie" to many of the other things I was called as a kid.



RaquiGirl
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07 Dec 2010, 3:51 pm

Also, is it possible to have whoever diagnosed him give him the information? That way it's more neutral and he may feel less judged than if his mother gives it to him (with all of her biased opinions and tendency to put an unrealistic positive spin on everything). I'm not sure about him, but that's where my mind would go... distrusting of the opinion of someone who loves me, as being unable to give me the whole truth and therefore inadvertently doing more harm than good. Personally, I think that having someone at the school discuss it with him would be better than trying to shield him from that experience. Although it would be nice if you were present for your own peace of mind, no doubt.


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AnotherOne
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07 Dec 2010, 8:27 pm

dulds,

i am not sure why do you think you can not provide insight even if he is at college? if you want him more independent then having more help from school sounds counterproductive? if he thinks he can try it, he should have some time to try to make it work. also he sounds smart and good enough with google so he probably knows what you want to tell him. if he refuses sounds like his choice.

my point is to address individual problems that he might have, like with dorms (getting a room outside the campus or even studying in the same city), but generally subjects would be more aligned with his interests so it should be easier than elementary and high school.



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08 Dec 2010, 4:42 am

Hello there.

For starters, I understand your child's reluctance to talk about things like labels. I wrote about this topic a while back, so I figured I would copy and paste what I wrote earlier, as it will probably be more eloquent then what I can come up with at 3 am.

Quote:
You aren’t going to do your child any favors by hiding his diagnosis from him when he is 13 years old. I can guarantee you that he KNOWS he is different. He may not know what it is called, but he knows what it is. If you don’t give him a label for it then his peers and teachers definitely will. And those labels are often times far less kind then the label he should have. And trying to hide the label and deny that he is different is only going to reinforce the societal prejudice that people who are different are somehow defective and shameful.
Part of the problems that comes with a diagnosis later in life is often denial, or resentment. This problem generally comes from social anxiety. After all, by the time your child is in middle school, he has been taught by his peers (and sometimes his teachers) that any abnormality is unacceptable, and requires bullying and teasing. Telling your child that he is strange, and he will be strange until he dies, is often times not what a teenager wants to hear. The problem is mostly caused by your teenager’s fear of being bullied and insulted for who he is. And as such he has probably internalized the idea that being who he is is somehow wrong. I have been down that road and I can tell you it was not a pleasant one.
As such, some parents tend to think that it is better to wait until the child is out of school and has developed a better sense of self identity and self esteem before they tell them about the diagnosis. The general reasoning is that they don’t want to negatively affect their child’s self image during the particularly difficult teenage years when a person’s self image is especially vulnerable. While I can understand this viewpoint, I don’t think it is a good idea. Speaking from personal experience I know that I probably wouldn’t have been happy to learn about autism when I was 13 years old. But the fact is that the denial and resentment would have eventually passed. And after that, I could have learned more about myself, and other people like me. It would have done much better for my overall self esteem then leaving me lost in unfriendly waters.
It may take a little bit of time, but if you just give your child some patience, information, and space then they will learn about it eventually. It may be rough for a little while, but it is better to go through a rough patch for a few months then to be lost for the rest of your life. So unless your child just had some major upset in their life (such as a family member dying) do them a favor and tell them that their autistic and what that means. It may be difficult to deal with when you first get started, but the benefits of finding out about who you are, and how you relate to the world are worth it.


As far as how that relates to your situation:
Your child is probably going to have a rough time talking about the diagnosis, but it is better to talk about it and have it go poorly than to never make the attempt. But I believe that your primary concern is how to go about doing the talking, and for that I do have some suggestions:

1. I would wait and schedule a time when you can have a long conversation without being rushed through it. Since exams are next week (at least for college) I don't think that the end of the semester is too long of a wait. If it were september, I would suggest telling him on the weekend, but a 1 or 2 week delay isn't going to be that big of a problem, especially when he is already trying to deal with exams. Just let him know that after he has finished with all his exams (and has had a day or two to rest and recover) you would like to talk about something important with him. Tell him it pertains to college, adult life, and so forth.

2. Try to set the stage nicely.
As I said before, make sure that you don't rush through this. Make a plan to spend the saturday in talking about it. And let him know that he shouldn't make any plans that saturday because you will have a lot to talk about. If you have any distractions in the house (other siblings) then try to get them out of the house for the day. Just try to create a nice, calm, atmosphere where you can have a conversation while not also trying to cook dinner, study for tests, and do Christmas shopping at the same time. Beyond that, I would suggest getting some ice cream, or pie, or something to munch on while talking about it. Everything goes better with pie.

3. Perhaps most importantly is how you present the idea of Asperger's Syndrome
I could easily write a book about this. In fact I already have (check the signature), but since you are looking for some more condensed information, I will try to sum it up. Basically, it goes like this. Having asperger's syndrome/autism can and does create some problems. Trying to deny that these problems exist is silly because then you only wind up deluding yourself, and the problems never get dealt with properly. And when these problems are not properly dealt with, they just snowball, grow out of control, and become even bigger problems. However, that does not mean that your child is defective, nor does it mean that his life is worth any less. Everybody has problems in their life, regardless of their age, gender, or neurology. What is important is not what problems you have, but how you deal with them. What your child needs to do is learn about his problems. Because learning about his problems allows him to better understand them, and better understanding them allows him to better deal with them, which is ultimately the goal.

And that is where the diagnosis comes in. You see, the diagnosis by itself is nothing but a word. It doesn't define who your child is, what he can do, nor does it force anything on him. Your child is the same person he was before this 'label'. This word cannot dictate the course of his life, nor can it make him into something he isn't. But what it can do is act as a guide to help your son better understand himself. By learning about the diagnosis, and reading about it, he will be better able to understand, and deal with his problems. Regardless of whether or not he ever puts it down on any forms, or tells other people about it, simply just learning about it will be a tremendous source of helpful understanding and encouragement which will give him the tools that he needs in order to make the best of his life.

4. What you are probably ultimately interested in is figuring out 'how' to tell him. I.E. what words to use, what to say, etc. And for that I am afraid I don't have a perfect answer. The reality is that there is no perfect answer. You just have to present the information as best as you can, tell him that you just want to help, and let him know that you aren't trying to label him, just trying to give him information. Beyond that, it would be helpful to provide him with some books. A decent first read would be Tony Attwood's "Complete guide to asperger's syndrome". Tony Attwood is nuerotypical, but I won't hold it against him. His book is pretty useful for what it is, and is a decent first read. Beyond that, some books or movies by famous autistic people may help him. I would suggest the book "Asperger's from the inside out". It is a good (if somewhat rambling) book that talks about getting a diagnosis late in life, and learning to deal with all the problems. If was written by an adult with Asperger's Syndrome, so it does give a pretty good perspective.

5. Beyond that, you will inevitably run into the question of 'who should be told'. Should you fill it out on forms? Should you tell the college? Should his friends be told? etc. And to answer that, I say that you let him be the one to decide. He is old enough to understand the situation, and he doesn't have to tell anybody if he doesn't want to. Just let him know that you aren't trying to label him as defective, and send the results out to every school that he applies to. The information that you are giving him is just for him to learn from. Not to arbitrary label him as defective against his will.


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RaquiGirl
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08 Dec 2010, 2:57 pm

Perfectly put.


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dluds
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08 Dec 2010, 5:19 pm

Tracker,

Thanks for all the great feedback. I'll have to read through it again, but I agree about knowledge will help my son deal better with different situations he encounters.

I was pondering on how to handle the information with the colleges. Commuting to college for the first couple of years might be the best option or try to find a single dorm.

Thanks! - I'll check out the book too.



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09 Dec 2010, 12:19 am

Tracker wrote:
5. Beyond that, you will inevitably run into the question of 'who should be told'. Should you fill it out on forms? Should you tell the college? Should his friends be told? etc. And to answer that, I say that you let him be the one to decide. He is old enough to understand the situation, and he doesn't have to tell anybody if he doesn't want to. Just let him know that you aren't trying to label him as defective, and send the results out to every school that he applies to. The information that you are giving him is just for him to learn from. Not to arbitrary label him as defective against his will.

To the OP, a mother with an AS son. I can expand on this question a little. When it comes to deciding whether or not to share the diagnosis with someone, teach your son to ask himself these two questions: (1) What would I benefit from sharing the information? and (2) What would the other person benefit from me sharing the information?. If there are no tangible answers to both of these questions, then in my opinion, sharing the diagnosis is not a good idea. The stigma of neurological conditions is still too strong in out society, so there is a chance that the information may be used against your son. Hence, asking these questions before deciding to share.



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10 Dec 2010, 10:39 am

dluds wrote:
Hello,

Does anyone have any recommendations on the best approach to convey diagnosis on Asperber's? I want to make sure he doesn't get discouraged, and disengage with school, friends or family. Should I wait for the weekend or during winter break? I was considering trying to speak to him in person, and then follow-up with email so he can read more about it with recommendations on books and maybe this site?

The doctor recommended discussing with counselor, but my son refused to go since they mainly dealt with younger kids. My son is 17, and is a senior in high school. He shuts down (does not talk and looks away) when I try to discuss topics he does not want to hear about such as school work or college applications.

I started to talk to him about the findings of the diagnosis in the past, but he said he didn't want me to talk to him about it. However, I think it is really important now for him to understand how he is unique, and ways to deal with it. He is very bright in areas that interest him such as programming, math, music (drums), but has a lot of difficulties with less tangible topics.

Thanks!


If he like programming, why don't you happen to mention the fact that Silicone Valley has more Aspies per capita than any other place on the planet.

Just as an interesting 'more of an ability than disability' intro.

http://www.wired.com/wired/archive/9.12/aspergers.html



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10 Dec 2010, 10:42 am

dluds wrote:
Tracker,

Thanks for all the great feedback. I'll have to read through it again, but I agree about knowledge will help my son deal better with different situations he encounters.

I was pondering on how to handle the information with the colleges. Commuting to college for the first couple of years might be the best option or try to find a single dorm.

Thanks! - I'll check out the book too.


Good luck with dorms - all that noise and people going off the rails for the first semester.

Yeah, that's pretty much an the worst environment possible for an Aspie.