Newbie needs advice - To tell or not to tell and how to tell

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Hi everyone,

I'm new to the forum, and new to the diagnosis. My 8 year old daughter was diagnosed with high functioning Asperger this May. We moved to Eastern Europe two years ago, and unfortunately attitudes here towards Asperger and Autism are much like what they were in the rest of the civilised world 30 years ago. We went to England for her diagnosis and there is no trace of it here in her medical journals.

My dilemma is whether or not to tell her and/or her school of the diagnosis.

She realised very early on that she was different from other children and is desperately focused on friendships, but not very good at maintaining them. I suspect, knowing her diagnosis might be a temporary relief, because it explains many of the difficulties she's been having.

However, she is unable to keep a secret, so telling her would mean all her classmates and their parents finding out,, which I'm sure would lead to her being ostracised by some circles. She goes to a British School here and after enduring years of bullying at other schools, she seems to have found a place that appreciates her for what she is rather than faulting her for what she is not. It is a strict school, focused on academic excellence, and this has been her saving grace. She is very intelligent and has no issues keeping up with and surpassing her peers academically, even though, having observed her on several open days, I realise that about 70 percent of her effort goes to coping with the social aspects of school life, and masking by mimicking behaviour. About half the teachers at the school are British, Australian or American, and they might (or might not) have any knowledge about Asperger, whereas the other 50 percent are local teachers, probably with attitudes that reflect the society around us.

What would you do under the circumstances? Do you know of any good literature or DVDs out there that you would recommend in case we do decide to 'come out'? DVDs which I can ask the teachers to watch, or books or DVD which might be useful for her to read or watch if I do decide to tell her.

Apologies if the question offends anyone. As said, I'm pretty new to this and still just trying to find my way. I'm grateful for any advice!

Tara

I'm not a shrink so take this with a grain of salt... or a truckload

From the sounds of it, she's doing okay on the academics front, despite the efforts she's putting into "being social". I'd say that for now, since she's handling it all, leave things as they are.

If/when she starts having serious trouble - trouble she doesn't seem to be able to handle, start helping her out with things like basic communication, get her assertiveness training books - she may or may not have some assertive skills, but those books have helped me understand alot of the basics of even normal everyday communication procedures and expectations. Give and take. Social needs NTs have that we simply don't think about.

And/or sign her up in programs that deal with interpersonal relation skills, and such. She may resist these, but tell her it'll help her in her academic and business dealings when she gets into higher grades - that it'll put her ahead of the pack.

Then, in a few years, if things start getting too frustrating for her and your efforts to help seem to be insufficient (eventually they will be), telling her the diagnosis will help change "whats wrong with me" thought confusion into "oh, I see, I'm different" clarification... And give her a basis for researching on her own.

Just my take on it.

I would DEFINITELY tell your child about Asperger's Syndrome, but make sure that you do it in a way which really explains to the child what it is all about. Simply saying, 'You have Asperger's Syndrome' is practically useless, and if she just spreads the information, it is downright harmful.

I would instead focus specifically on what you want your child to take away from it, and what you think she would benefit from knowing. You don't need to use the phrase Asperger's Syndrome to discuss her difficulties, and come up with good solutions. If you want my full take on the matter, I would highly suggest visiting the link in my signature, downloading the book, and then skipping to page 165. And of course, if you have the time, read the rest of the book as well.

Thanks for the quick replies! Tracker, I'm reading your book. I haven't reached page 165 yet, but what I find most interesting are the glimpses into a different way of thinking. I often wish I could crawl into my daughter's mind and understand her better, so I could help her more.
Tara

It is important that you tell her sooner than later because she will come up with her own theories to try to understand the difference between her and others

I was diagnosed at 8 but I had to find out on my own when I was 24-25ish while watching Temple Grandin on 60 minutes. It was like this woman jumped into my head and explained me perfectly unlike anyone else ever had. It had a name...Autism. I told my mom and she told me that I was diagnosed as a kid, but she did not want to label me, but unknown to her, I already labeled myself far worse things. I just figured that I was broken and no body could possibly understand me and I was utterly alone in my personal dysfuction.

This is how you tell her
Start with acknowleging that she feels different from others and acknolege her difficulty understanding others
Tell her about Aspergers as a form of mild autism. It doesnt mean anything is wrong with her, but that she is wired differently. She thinks differently and percieves the world differently and relates to others diffferently, but it doesnt mean anything is wrong with her, in fact Asperger's enables her to have gifts that others dont have, but it can also create difficulty relating to others.
then go to say that unfortunately we live in an area that does not embrace neuroloical differences, so you need to keep your diagnosis to yourself untill you are older. There is nothing to be ashamed of...you did nothing wrong, and you are perfect the way you are, but others may be ugly because of ignorance of ASD's

Then go on to tell her about people all over the world have AS, so she is not alone. Some are well known people like Bill Gates, michealangelo, Einstien, Edison, Jamie Hyman of mythbusters, Kandinsky, the list goes on and on. Also do your homework and there is a website that list many famous people with ASD's

Also introduce her to WP,,,it has been a godsend for me to feel as if I belong somewhere.

And Welcome to WP!! !

I hope this helps

Just to toss a different opinion out here.. you say that she has a hard time keeping a secret and you believe this diagnosis will hurt her. You also say that she is fitting in fairly well in the new school. I would not tell her about aspergers at this point.

I do not not tell my child anything that is not open info for whoever. I just dont believe in putting that responsibility on the child. If I dont want everyone to know than she doesnt know.

Jordan has always been different and we have talked about those differences long before I have heard of aspergers. So maybe put things to her and her teachers in terms of 'being more sensitive', 'more aware of what is going on in her environment', 'less comfortable around groups', etc.

I would talk to her and others about the specific issues she has and do things that help those issues, but if they 'label' aspergers is going to hurt her and you do not feel she is comfortable keeping that to herself dont tell her. Just do things that will help the behaviors, talk to her about the specific traits and leave the label until she (or her peers) are ready for it. Or there becomes a very definite need for others to know. My daughter and those caring for her have always known she was different and had certain needs. Things have been dealt with in terms of this is her personality. I've always told her everyone is different and everyone has strengths and weaknesses. These are her.. these are mine, etc. Some people are nice, some are mean, some sensitive, and some just barrel through the world without a thought in their head and thats ok. Her 'reason' for being different has always been that she is like her mother.. LOL

I didnt know the label so we just framed things in terms of personality and unless you are having severe problems that may be all you need to do to.

There's a collection of threads on disclosure here: http://www.wrongplanet.net/postt166142.html (scroll down to the last post)

I tend to agree with OddFiction and Tracker, in that you can explain her differences and what you're doing about them without using the A-word right now. You could say something like "some kids need help learning how friendship works, so that's why you go to (social skills or pragmatic speech classes)"

We had very good luck disclosing my son's diagnosis to him and to his classroom, but from what I'm hearing from other parents, our experience is one of many. One difference may have been that we disclosed in 4th grade (around age 9,) and the other families I know who had a bad experience with disclosure did so in middle school (when kids are 11-14.)

Thanks for the welcome and for weighing in, everyone! Your posts sound a lot like the internal debate I've been having:) Momsparky, that is a brilliant collection of links! They will come in handy not just for the disclosure issue, but also for exploring the forum.
Tara

Thanks, Tracker. Great book! Amazingly concise and effective communication - incredible to imagine it was composed by a person with difficulty stringing words together!

My daughter has neither been diagnosed nor has it even been suggested directly to me by teachers etc. that she needs "help". One the one hand, this is good because the American way of labelling every slight aberation as an ailment requiring treatment is extreme, and because she is clearly so "high functioning" as to "pass". Yet the more I read on these forums, etc., the more I am convinced of my own, unprofessional diagnosis.

Thus the "whether to tell" quandry takes on an additional nuance. As I have no problem acknowledging my own plethora of emotional difficulties, and gratefully accept therapy and Zoloft, I have (way before even knowing the term Asperger's) at times tried to gently suggest that she could benefit by having a professional to speak with about her feelings/troubles/etc. She generally reacts hostilely, as if I were suggesting that something was "wrong" with her that needed fixing. When I try to stress that it is just because I see her swallowed by negative emotions such as anger and intense dissatisfaction (characterized by a sort of arrogance in which she blames her environment), she tells me that she is only that way with ME, her mother. I of course know that is not true: her relationship with her father (we are separated) is far worse; a friend who took her out one evening reported back to me that she suddenly, halfway through the eveninng, clammed up and refused to interact, when all had been perfectly normal moments before; she actually DOES have flesh-n-blood friends, but I have barely met them since she "doesn't want them to have to suffer" out home environment (her 16-year-old sister regularly invites heaps of girlfriends over, who adore coming); my friends and family members have always understood (and respected) her moodiness. Much like her father, she can be the most delightful person in the world, and one would do anything to stay in her good graces, but she can turn around and be aggressively mean and hostile in the blink of an eye, with the result that everyone (even her mother) tiptoes around her. This is certainly not conducive to teaching her to respect the feelings and wishes of others.

I believe she could benefit from at least approaching the hypothesis that her brain may be differently wired - I CERTAINLY do not see differentness as a disability! - but don't think she would be willing to hear it from her parents. (I will e-mail Tracker's book to her father, but I betcha he doesn't read it!). I think she would view my suggestion as an intrusion and an affront.

Damn! I've come close to writing a book myself here (sorry!). My basic request for advice is similar to many other posts on the forum, but each nuance is different and I haven't found a situation quite like mine.

Thanks,
Celebrate

Celebrate, your situation is actually not all that uncommon - we faced it, too. I think the thread where I asked about it (and got good advice) is here: http://www.wrongplanet.net/postp3005095.html#3005095

And the thread where I wrote about what we did and the eventual outcome is here: http://www.wrongplanet.net/postp3005095.html#3005095 (in both cases I linked to a specific post of mine, but both threads are well worth reading from the beginning.)

Thanks, momsparky-
but you posted the same thread twice. I did not find where you actually told your son and what the outcome was.
I have an adult friend whose Aspie traits are far more evident than those of my 19yr old daughter. He has been being treated only for anxiety since he was a kid with the result that he is severely addicted to Xanax, a devotee of what I classify as a cult, at 36 still financially dependent on his mother... but when I suggested that Aspergers could explain his quirks and accepting (or celebrating, if you will) his differences could ease his anxiety, his resonse was: stop trying to label. Please see me in a more positive light. We create our own reality, so if you feed energy into believing your daughter is abnormal, you will MAKE her become that way!
In other words, despite my "celebratory" intentions, he felt attacked and stigmatised.
This is what I want to avoid for my daughter. I don't know if she feels "different" other than knowing, but not believing, that she is lightyears smarter than most of her peers (was reading and writing complex stories at 4 yrs old). She has recently downloaded episodes of Big Bang Theory to show me, so I feel certain she identifies with the nerd mentality (she is planning to study IT or physics this fall at university - altho she has excellent verbal/writing skills, adores her theatre group, has contributed a comic strip to the school newspaper).
Sparky, all the Aspie folks resonded that they wish they had been told sooner, but they had all been actually diagnosed. I don't view her mind-set as a disability, but I am afraid she would think I did. I only want her to be able to navigate the waters of this planet with more ease, pleasure and "success".

Thanks again Momsparky- please guide me to more threads as this wonderful forum is so chockful of insight, I find myself obsessively reading threads as if they were soap operas and me a tv junkie, without necessarily finding information I can actually apply.
Celebrate.

No problem, sorry - I think this is the right thread?