How do you tell an older child about their diagnosis?

[leiela]

My DS1 was diagnosed with ASD 12 months ago (he?s 11) and we haven?t told him yet. He?s noticeably different to his peer?s and before the diagnosis we always explained this by saying ?everyones different and if everyone saw things in the same way then the world would be a boring? likening it to how some people like football and some people don?t etc. Mostly because at the time we didn?t know what the problem was.

However as he?s getting older He?s becoming more and more aware of these differences but as currently stands he personally put it?s down to the fact that he?s just ?cleverer? and other kids are just too stupid to understand him.

He?s high functioning so he does deal fairly well in most situations he?s academically ahead of the game by a significant amount it?s mostly socially he struggles. Though other aspect's are becoming more noticable as he get's older.

My OH doesn?t believe we should tell him?. EVER? he believes no good can come from it.

Part of me agree?s with this because I cant imagine my son would take the new?s well, he gets very distressed very easily and I can imagine him taking the new?s as us saying he?s unfixably broken and i don't want to ruin his self esteem which he stuggles with anyway.

However when he get?s upset and distressed, about not understanding things at school, getting confused at day to day task?s or feeling ?different? from his peer?s I think perhaps having him understand the cause of these difficulties might help him manage it. I Also think it might help DS2 understand why DS1 is the way he is etc.

What would you do?? Would you tell him and how?

I would def tell him (and have told my very HFA DS who is 10).

Then I would get him a book like Freaks, Geeks and Aspergers

Once he knows about his dx then he can choose what to do with the knowledge. He might want to research it. He might want to join a support group like wrong planet. He might want to research therapies....

I don't think it's at all fair to withhold support from him.

My DS continually complains it's not fair that he's got Aspergers. Which of course it isn't. But is in a far better position knowing why he finds things hard....

I would tell him. Personally I think it is only fair.

DS (15) was dx'd a lot younger (6), we have always been up front, but it was only when he hit his teens that the dx became important to him, helped him (sometimes) understand the differences between himself and his peers. He has to work harder to get where others do easily etc.

DS has difficulties with learning and social interaction; apparently when people call him 'retard' he responds 'I've got Dyspraxia, what's your excuse'.

Wrt to sibling understanding - sometimes it helps that they understand; DS1 can be very protective of DS2, at others DS1 sees it as DS2's excuse not to do x,y,z. Pretty much the same as between NT siblings.

You really need to tell him, knowing that you are different but not knowing why is extremely stressful and confusing.

It's not the same but I was dx with dyslexia at that age and was NEVER told until I worked it out myself at University. When I think about how easily I gave up on things because I couldn't understand why I kept getting them so wrong even though I understood the theory... it's just shit. And I made a lot of important choices based on incorrect information about myself.

I think your OH is very wrong actually..and that you should tell him.

As he enters puberty and teen years, it can be hard enough anyone..most teens feel they don't fit in at some point, and to KNOW you are different but not why, when there IS a why to make sense of it.. that's not going to help him.

Yes he may be upset at first but he may also be somewhat relieved especially as he can associate his dx with 'clever Aspies' (go with the Bill Gates idea) and it may also allow him to seek out other Aspies later..there are plenty of groups for adults with AS.

My son is 14 in a few weeks... he has ASD and MLD and we told him some time ago. I started with the positives..why he has such an amazing memory etc and then added in'this is because....' and only then did I say this is why he gets anxious etc etc. It seemed to work quite well and he is quite proud of his ASD:)

having the diagnosis has helped my DS's self esteem massively - he was very much of the opinion that there was something wrong with him, because everyone else could do things he couldn't and he struggled to make friends he decided that he was useless

Knowing that he has Asperger's, that he isn't broken at all, just wired differently and 'normal' for him has made him so much more confident

leiela

As you say it is difficult, and the initial discussions could well be pain for all involved. But long term it will help all have a better understanding of the both the the deficits, you mentioned the social issues, and the benefits, the academic achievement issues, so it is not all bad.
The academic achievements side can be known as Savant Syndrome which is part of the spectrum.

I have an Invisible Disability, and I to enable me to self advocate affectively I have had to do my own research late on in life, which is not ideal, and has meant that i have not been able get anywhere near my true potential. All of our sons share this Invisible Disability in vary degrees, but we have explained the issues to them are varying levels of detail as they have grown up. We need to understand our limitations, or deficits, and we need to understand our strengths, and how best to cope with our difficulties and how best to explain them to others. There can be problems in the teen years when they go into denial, needing to feel like all their peers.

"My OH doesn?t believe we should tell him?. EVER? he believes no good can come from it." I think this option is only storing up deeper problems for later years, especially as more detailed information regarding these issues become more accessible via the internet etc.

If you visit say the http://answers.yahoo.com/ Yahoo Answers forums for instance you will find adults and teenagers talking about their ASD issues, to help others understand either their own problems or how to provide some level of understanding.

How should i approch this with my OH??

it's been coming up alot lately with appeal cases etc but i think because my son function's largely fairly well my OH tries to ignore the problem.

I certainly don't think he notices my son struggling as much as i do and not because he doens't care but purely i've pretty much self diagnosed myself as well during this process so i can relate alot of his issues more so than my husband can. I struggled in school alot and ended up in a mental health center at 14 when i had a complete breakdown. I think understanding why he's different would perhaps help to avoid this for my son but my OH is unconvinced.

I just don't think my OH is ready to understand it yet.. and would rather pretend it isn't there. I guess my son knowing would make it harder for him to ignore??

He can't seriously hide it from your DS though, it's not chickenpox, it's not going to clear up - as he gets older he'll be more involved in planning support at school, which will make it very hard to hide, when he hits 16 he's an adult as far as most things are concerned and he'd find out then anyway...so it needs to be done in a way that's going to cause him the least stress

Get your DH to read Freaks, Geeks and Asperger's syndrome - Luke Jackson makes a very strong case in it for sharing diagnosis early

Agree with everyone above. You must tell him for his own benefit.

Your OH sounds like he's still in denial about the DX, it can take you a long time to completely accept it. The dads can often take longer than mums as they don't spend so much time with their children as mums do. Do you think this might be part of the problem? Getting him some books like Luke Jackson's with the excuse that he should read them to decide whether your DS should, when actually they are to convince him that the DX is correct? A little bit devious, but kills two birds with one stone?

We only told our DS2 recently, he is 11 but DX with HF ASD when he was 3. It's never been a secret but until recently it was over his head. We thought he should hear the DX positively from us, before he hears it in secondary.

I have sort of told my dd about her adhd tonite she's 7. I told her that she's more chatty and more energetic than other kids her age and I found a list online of famous people and sports people with ADHD which she thought was fab. Always good to use examples of celebs with the condition so CAmHS told me x

It's difficult, but I think he will need to know eventually - or rather he'll probably work it out himself. How would he feel if he found out you had known all the time and not discussed it? My DS2 (7) has recently been diagnosed with Aspergers and we have told him although I don't think he really understands what it means. But he has known for a while he is a bit different and I think it helps him to understand that there is a reason and a name for that, and that there are other people like him too. He knows that his brain is wired a bit differently to some peoples' which makes him good at certain things but not so good at other things.