Diagnosis - to tell or not?

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I apologise if this has already been covered somewhere, I'm new to this forum and still finding my way around.

I have read in various sources (both professionals and stuff by Aspie writers) that it is recommended to tell your child of their diagnosis from the start. This is said to give the child a logical explanation for why he is different from other children and why some things are a challenge. It also encourages the child to see his condition as just an aspect of his personality, that will mean he has some talents and some difficulties, as opposed to seeing it as a shameful secret or a disaster. Plus of course there is the practical issue that it isn't nice for the child to find out later that all his family, adult family friends, neighbors, teachers etc knew about the diagnosis while he wasn't told.

So all these reasons seem to make sense to me, yet I still don't want to tell my child!
He understands that he is not "normal", and we have talked to him about it. We basically explained that everyone is different, there are some things that he can't do as easily as other people, but there are also some things he can do better than most people, so with the problem areas he needs to persevere and work at it. But I just don't want to tell him "You have Aspergers". Confidence is a huge issue with him, he is very reluctant to try anything if he doesn't believe he can succeed, and I feel that giving him the label could just give him more of an excuse not to bother trying, or make him feel that there is something wrong with him.

It's a similar story with telling other people. We have told very few people because we don't want him to be given a negative label and people then assuming he won't be able to do things. Sometimes I want to mention it, for example to people who think he's rude because he finds eye contact difficult, or because he pretends he doesn't hear when somebody asks him a question he thinks is intrusive, irrelevant, etc, but then he might assume that I think he needs excuses, or that I don't believe he can learn skills.

I'd be interested to hear from either parents or young people what your thoughts or experiences are with this.

How old is your son?
We haven't told our 5 yo son yet. He was diagnosed in November. I don't know how much he would understand about it. He hasn't noticed that he is different from other kids yet though. I do explain some things such as "it would make you feel better right now if you jumped on the trampoline" but I haven't told him the full reason why. Maybe I should though. We haven't decided when we should tell him.

Please tell your son. He already knows he is different and it can effect his self-esteem if he doesn't know why.

I have 3 sons - 2 diagnosed Aspie. They were an absolute mess 1 year ago (around about the time they got diagnosed). They've had therapy and an IEP at school.

But I believe one of the most helpful things for them has been knowing they belong to a wider community. Knowing they are not alone.

My 9 and 8 year olds joined WrongPlanet. Their interest in WrongPlanet comes and goes. They tend to post heaps on WrongPlanet when they're feeling lonely or upset. They always get feel better after visiting WrongPlanet.

Both my sons have had crushes on various WrongPlanet girls.

One son chats regularly with another girl (Aspie) his age.

Another son is in love with a 20-something year old Autistic woman. He saw a photo of her in a lab with lots of test-tubes around her. It was instant love - firstly because she works in a cool lab and does cool experiments all day; secondly because she's incredibly beautiful.

I'm rambling. This is the way we told our middle son who was diagnosed first.

We told him like this:
- we made a list of strengths and difficulties of each family member
- his lists of strengths included: maths, ability to focus, art, intelligent etc
- his lists of difficulties included: making friends, reading other people's facial expression, understanding when they are given lots of instructions, worrying all the time

We then told them him there a lot of people who share his strengths and difficulties. He belongs to a group of people who have Autism / Asperger's Syndrome.

We then read to him a book called 'My Book of Autism Heroes' which profiled famous Autistics like Einstein, Newton, Diane Fossey, Hans Christiaan Anderson, Andy Warhol, Temple Grandin etc.

Our older son got very jealous of this list of smart people. He wanted to have Asperger's Syndrome. A couple of months after saying this he got diagnosed!

The first thing our older son did when he was diagnosed was go to WrongPlanet. Here's the thread where he announced to other WrongPlanet members. You'll notice how kind and supportive people were.

http://www.wrongplanet.net/postt34890.html

Helen

I think it's like not telling kids they're adopted... they have a nagging feeling for years, and when they finally find out, they feel betrayed and deceived.

Our son has always known, but has only just started really being interested in what it means. We, like Smelena, have tried to make it into a positive thing: that he is great at maths, construction and biology - we found great role models who have autism, including Einstein, Temple Grandin, Alex and the creator of pokemon .
We have carefully suggested that some of his problems are because he has autism They are not his "fault".

He has just discovered WP and it was a thrill for him to discover how many other Aspies there are - and that they share his interests.

MollyMum, Our son will be 5 in a couple of months. I'm sure he would understand - although obviously not at adult level - if we told him about the diagnosis. He isn't really aware of psychological conditions (I guess physical conditions are obvious at an earlier age when you see people who use wheelchairs, have a carer to assist them etc) but he is very good at taking in factual information.

The other bit of background is that his father and I are not 100% confident about the diagnosis ourselves. He has been seen by a variety of professionals and had various tests, but after several months of psychologists, social workers, speech pathologists and so on, all they gave us was a "tentative diagnosis of Aspergers". They said that he has a lot of aspie traits but basically they were reluctant to diagnose due to his age (he was just 4 at the time). Because we are eligible for an extra social security payment if he is aspie, I took the reports we had to the paediatrician, who happily signed the paperwork saying he diagnosed Aspergers. However, he only saw my son once and didn't carry out any of the evaluations himself. The other thing is that we got a psychologist friend to go over the reports for a second opinion, and he pointed out several flaws in the assessment methodology. Anyhow, our child is undoubtedly "more aspie" than average, but whether his differences actually categorise him into the spectrum or whether he's merely on the aspie end of "normal" seems to be a matter of subjective opinion.

Although we have ongoing issues with a number of aspects of his personality, he has come a long way since a year ago when we first raised our concerns with the GP (family physician). A friend of mine who is also a GP has a son a bit older who was diagnosed with autism some years back. She says that he has progressed to the point where he would probably be diagnosed as Aspergers rather than autistic now, so if my son was labelled Aspergers at 4, he may well officially move off the spectrum altogether over the next few years, even though he'd presumably still be an eccentric person.

So the point is, I'm thinking why saddle him with a label that might limit him and make him feel bad about himself, if it might not even be relevant later on? But I don't know, maybe some of this is more about my own issues of being unable to come to terms with having a "disabled"/"different"/"abnormal" child.

Helen, I really loved your method of using the strengths/weaknesses to talk about your son and then explain that there are lots of other people who have similar ones. It sounds like a really positive way to introduce the diagnosis.

We got my son the same book - it's excellent and I think it changed forever how he felt about himself - he was around 9 at the time (he's now 11). My son was truly amazed that there were so many cool people that were sort of like him.

I don't know if at age 5 you even need to use the term "Aspergers" but as someone else already said - explain the positives of Aspergers - there are lots of them!

After the "doom and gloom" period of shock when you get a diagnosis (or even when you just know he's different) and by being on this board and really seeing how your child is you will hopefully find that Aspergers does not have to be the negative thing it is portrayed as (by NTs).

At some point your son is probably going to need to know why he is different from other kids. And some of your doubt probably does come, as you said, from your own issues about having a "different" kid. This is where you need to truly look at your son and not use NT words like "abnormal", "disabled" to describe him.

With the love and caring that you obviously show for him your son will find his place in this world, and he may not totally fit into the NT world - as my son doesn't either -but if you look closely at some aspects of the NT world is that such a bad thing?

Currently, I have not told my son. Another poster, on another thread, had this to say:

"Part of it of course is because 'officially' I am viewed as capable; whatever problems--and they were many--I had at your son's age (11 years), mysteriously "disappeared" once I became mainstreamed in high school. Sort of like having your glasses taken away after a lifetime of wearing them and being told you now have 20/20 vision even though you know nothing's changed with your sight. It's amazing what a little ignorance can do, if you don't know you are supposed to have limitations or admit to having them."

This is from someone with Asperger's.

This is why I'm currently NOT telling my son. That could change, depending on how much trouble he may have socially or academically in school, and definitely will change if he straight-out asks me. But so far, he's doing ok both socially and academically. He seems happy. I do wrestle with the concept of withholding information, but I was advised by a mother in a similar situation that it wasn't particularly helpful to him now. She told her son when he was in his late twenties. He was bothered by not knowing at first, and then after a few days actually thanked her for not telling him, citing that he "wouldn't have accomplished as much" if he had always known. The odd thing is, she thought she had discussed this with him when he was child, and he had forgotten it all!

My situation may not be the same as another parent's situation with their child. I think that parents will probably know whether they should or should not tell their child about their diagnosis. The question becomes this -- will telling him be of benefit to him? If the answer is yes, then tell him. If knowing won't be helpful, then don't.

Kris

so much of this decision making IMO, really needs to be based on your individual child's cognitive & psychological functioning....someone who is 5 would probably not get the same explanation as a 13 year old....when my son was dxed at age 13, he could not handle the eval process due to stress. it took an exorbitant amount of time to get him through the testing. he realized he had issues, but was terribly depressed about being different- in his words: " not normal". had we fully discussed his official dx with him at that time, i think he would've gone off the deep end even further. once he was in a calmer state for longer periods of time, we were able to discuss his dx with him.

My son did really well knowing that the result of all the testing we did was discovering that his brain worked differently, that it came with gifts and burdens, and that now the school would be able to help him better. I don't think the "name" of the diagnosis is anywhere as important as understanding there IS a diagnosis, that there is a reason, and it comes with good things.

My son also enjoys having role models with the condition pointed out to him. HUGE confidence booster!

I do not believe in hiding things from our children. But you don't have to provide more than they want, either. The funny thing is, is that my son never asked if there was a "name" for his condition, he didn't care, he just liked knowing that this was how he was supposed to be. He has eventually learned the name, but it still isn't important to him. All he cares about is knowing that "kids like him" also learn to tie shoes late, have trouble riding a bike, like to pace, and have found chewing straws to be a good thinking tool. And he wants to be at every conference with every teacher and participate in absolutely every decision about how it all gets "handled."

I told my son about the diagnosis. He was 8 at the time. I didn't think telling him was a big deal. He was having significant issues at school. He was relieved to hear that there are other people out there like him. He knew he was different.

But, I don't treat him like he's disabled. I expect him to grow up and hold down a job one day. I'm not pursuing disability benefits or anything like that. Sometimes he throws his label at me as an excuse for sassy behavior and I tell him that is no excuse. Just because it's harder for him to control his impulses doesn't mean he can get out of learning how to control those impulses. He just has to work that much harder.

Since learning his diagnosis, he has more self-confidence though. He doesn't call himself bad or stupid anymore.

I have asked exactly the same question on here (twice, actually). My son is 7 yrs old and we have decided in the meantime to tell him that the doctors think that his brain works differently to others, and listed the good things about that and the things he needs help with (similar to the strengths/weaknesses I read about in Smelena's post). I think it is more important at this stage that he understands what AS is, rather than give him some foreign sounding label. Personally, at the age of 5, I think that the words "Asperger's Syndrome" are such advanced vocabulary (ie. most 5 year olds wouldn't be able to spell it, yet alone articulate it . . . ok, on second thoughts maybe some AS kids would) that I think it doesn't hurt to wait until they can get their brain around the terminology. My son will turn 8 soon, and I think I will maybe introduce it at some stage over the next year. More like, "Oh, by the way, what I told you about the doctors thinking your brain works differently ... that's called AS, in case you're interested.", as opposed to a bombshell announcement, "You have AS."

Regarding telling other people, we have kept the diagnosis reasonably confidential (ie. teachers only, and about 10 other family and friends). I am still thinking this decision through as to whether we tell more people, but I need to be 100% confident this is the right thing to do. Often I will say to people that he struggles socially etc.

All the best. I know it isn't an easy decision to make. I come back to it over and over again.

Thanks for the input everyone. Interesting that there are a few different opinions on the subject.

Rachael your words are very wise. I agree that I need to work through my issues so that I can let go of the grief over having a "different" child. Also I apologise if anything I write sounds in any way disrespectful of AS children (or adults). I honestly believe that diversity is a wonderful thing, and that the world needs people who look at things a bit (or a lot!) differently. I think it would be a tragic loss to humanity if 100% of the population were NT. But on the other hand, I would give a lot to make my child "normal". Not because there is something wrong with him, but because there is something wrong with society in that everything is set up in a way that makes things so much more difficult for people who don't conform to expectations. Does that make any sense?

Kris, that is a good question, as to whether telling him would offer him a net benefit. That is something that worries me a lot. My child is very black and white in the way he thinks, eg he can get very distressed if he thinks something is inconsistent or a rule is being broken. He also pays a lot of attention to what people say and tends to take everything at face value, eg if his 2yo sister tells him he can't do something, he will believe her, even though she is obviously teasing him. Consequently I suspect he might get very hung up on labels. I can view the AS label as nothing more than a helpful guide as to what challenges he might possibly face and what sort of support might be helpful for him. But he may see it as a life sentence that limits what he can do.

Ster, yes I agree, timing it right is important.

DW we generally don't hide things from our children either, but we also don't go out of our way to introduce concepts before they are interested or come up in our daily life. So for example my son knows all about human reproduction and childbirth, because he is going to get another sibling this year and he's very interested in the new baby. But he doesn't know about terrorism, because he has never heard of it yet. The problem with the diagnosis issue, though, is that he knows that his being different is not something I'm comfortable with (I do try my best to be accepting and take his differences into account, but not being a perfect parent, sometimes I get so frustrated that inappropriate comments slip out), so he avoids talking about it. And there is no way I'm going to have any sort of productive conversation with him if he doesn't want to talk about that topic. He would just ignore me, and when that didn't work, he'd try to change the subject to his areas of special interest. Eg Me: the doctors think that your brain works a bit differently from most children's brains. Him: I need a 12V battery to power this CPU fan (except my example is probably wrong, because I don't know as much about batteries as he does!)

Tortuga, that sounds as though you handled it really well, it's obviously a big plus that he no longer thinks of himself as being "bad" etc.

annie, your approach also makes a lot of sense to me. By giving your child the relevant information, he won't feel as though you have been hiding anything later on. I have also used the technique of mentioning specific difficulties rather than saying he has AS, eg "when he is really interested in something, he finds it difficult to change to another activity".

I have no children yet, so I can't give you advice from that angle. What I would like to say is I would have really liked to know I had a light form of autism (got my dx at 25). I spend my entire childhood trying to fit in while never succeeding. Only when I finally just gave up and saw myself as different I started to get a bit more social (strangely). Ofcourse there is no reason to treat someone with aspergers as disabled, for the simple reason they are not! I'd rather work on strengths. Being different is not all that bad as long as it doesn't make it impossible to be oneself. I know of a few stories where the aspies have heard about their diagnoses only very late. They always felt very cheated.

Ofcourse if you are really not sure, try to find out more before you start telling him. Children need support, but it should be right support!

When they know they are receiving extra help, feeling different and old enough to understand these things--most children will want to know what's going on. It is the parent's job to be honest and up front, I think. To deny that there are issues, or difficulties, will make the child feel as if he/she is crazy or dumb.

I have to explain to my son because he struggle with intrusive thoughts (ocd) and he needs to know what it is. He is perpetually worried about many things. I reassure him constantly.

It is apparent that he has a paraprofessional and other kids don't. He takes the short bus and other kids don't. Again, he demanded an explanation last summer. I did what semelena did--discussed strengths and deficits in pretty much the same way.

He doesn't like the word disorder and so we don't use this word.

i told my 4 year old son that he had aspergers after his dx not that he really understood much, and told me, "no i don't want that."
but i figure at least he's heard the term and I've brought it up a bit with him, as he gets older i will explain it more as he wants to or needs to know.
i agree with Tortuga though that even though he has the diagnosis i still expect him to do certain things it's not a, get out of jail free card, so to speak, but there is a change in the way it may be done.
just my 2 cents.

I haven't told my son, he's 6 1/2 because honestly, because of his speech delay, etc...I'm not sure that he would understand at all...however, we do talk about his strengths and autism/hfa, etc...in our home as not a bad thing, but a good thing...and then sometimes we talk about him getting therapy for X, Y or Z to help him...I don't know if this is right or wrong. I know that as he gets older, the difference seems to be more...the other kids stare more at him...it's heartbreaking as a mom to see the reaction from other kids...It's also heartbreaking when the other parents say "he seems fine, just like all the other kids", yet you see how the other kids are staring at him, etc...

I don't know what the right answer is...but I thought I'd share this with you, so that you know that you're not alone and I don't know there is a perfect answer for us all...each of our kids are different and you know them better than anyone...

Now, I will tell you this...from an ADULT perspective, when I was younger and was put in special ed for a while, then moved out and put in advanced classes, etc...and some people would make smart remarks about my behavior, I grew up thinking that I was stupid and a horrible child...when I learned about my kiddo and then found how similar we were, it made ALL THE DIFFERENCE in the world...it was a very peaceful feeling knowing that I was not a bad person, I just was wired differently...and of course, coming here and seeing so many others like me, has also brought me peace.

Good luck to you.