Dad has informed everyone of DS confidential medical diagnosis in Xmas email. AIBU to be livid?

(139 Posts)

I have just found out via visiting mil that dad has written about DS dx of autism in his Christmas newsletter which we weren't sent a copy of.

He didn't ask permission.
He has not been any help or support.
The background -
www.mumsnet.com/Talk/special_needs/a1734116-Post-Dx-grandparent-reaction-bingo-did-I-miss-any-Long
I've emailed
Dad

Mil has just mentioned that she received a copy of your Christmas newsletter and that you mentioned our child's confidential autism diagnosis in it.

Please can you send us a copy and let us know how many people this information has been shared with.

Many thanks
Trucks and Mr Trucks

Recipients number dozens, over 100 and include immediate family members we have chosen not to tell (yet, in some cases) and pretty much everyone who knows my family and has been close to us last 50 years.

WWYD?

DH is furious as am I.

link ink{http://www.mumsnet.com/Talk/special_needs/1734116-Post-Dx-grandparent-reaction-bingo-did-I-miss-any-Long?msgid=45383272#45383272\www.mumsnet.com/Talk/special_needs/1734116-Post-Dx-grandparent-reaction-bingo-did-I-miss-any-Long?msgid=45383272#4538327]]2}

Topaz25 Thu 27-Feb-14 03:19:11

That does seem an inappropriate subject for a Christmas email. Did your dad know that you had chosen not to tell people yet and didn't want him to tell anyone? What is your relationship like with him normally and does he have a history of overstepping boundaries?

ThePost Thu 27-Feb-14 03:21:43

YANBU. What on earth was he thinking?

Topaz25 Thu 27-Feb-14 03:22:01

Sorry just read your other post. It seems strange that after initially being so dismissive of the diagnosis he has now told everyone. Is there any chance he is trying to overcompensate by going to the opposite extreme? I'm sorry he is being so unsupportive.

Caitlyn2014 Thu 27-Feb-14 03:27:25

Hello there,

I think you are all coming to terms with a lot and perhaps now is the time to be gentle with each other because there is absolutely nothing to be gained from family fallings out. I've been in your situation with an ASD dx so can say that with certainty and without wishing to hurt or upset you, that its you who would give me concern. All this secrecy is getting you nowhere, its not helping with your anger, and I sincerely believe you will continue to find situations to vent your misplaced anger till you have come to terms a bit more with what is going on. I think right now you may 'just' be going through the motions of it, its what happens but in many ways it can be very unhealthy. Time will help you with moving on to the next stage of things but how you deal with the 'now' will determine your next stage.

No good comes of secrets, and I really do hate to say this, but if you were trying to keep this a secret by way of perhaps 'passing your son off' as NT when he is older because you have been told he is mildly autistic it wont work, because there is no such thing as mild autism and there will always be someone around him who spots his autism straight away.

Its early days for you yet and I really do wish you and your family well.

ThatVikRinA22 Thu 27-Feb-14 03:33:10

i would call him and ask him what the hell he thought he was doing? and then i would tell him to mind his own business, ask him how he would feel if you revealed confidential medical information about him in your bloody xmas email?

i would be livid and i would tell him so. and tell him that he either supports you or to butt out.

arabellarubberplant Thu 27-Feb-14 03:49:15

I'm not too bothered about my parents sharing any dx with their friends and wider family tbh. It's nothing to be ashamed of.

I'm slightly weirded out by your formal email requesting details of the letter concerning your child's confidential diagnosis etc. it's the sort of thing you'd bollock the local authority for, rightly, if you hadn't signed a release of info waiver, but in all honestly, what's wrong with calling him and saying 'bloody hell, dad, what did you tell Aunty Jo?'

I think you might have over-reacted, I'm sorry. A lot of people use their Christmas correspondence to let folk know about important things happening in their lives - and I think it's somehow quite sweet that he has understood the importance of the dx and how important it is to you, and this 'unholy breach of confidentiality' demonstrates how much it means to him, as well. I did lol at you not receiving a copy. Does he's end you a copy of every letter he sends? (Do you have this problem with the LA as well?) grin

Why are you keeping the dx a secret? It's mildly ironic that that was his initial instinct, and one you had the hump about, but you are now upset about him Not keeping a secret...

It'll be fine. Call him and apologise for your ridiculously formal email, and then just have a chat. Really. He probably thought the was being supportive by acknowledging his Gus's disability, and that it showed he was recognising him as a member of his family, inclusive, and that he has nothing to be ashamed about.

I'd be more worried about a grandparent NOT talking about the gc's in a Christmas email, tbh. Or gp's that refused to acknowledge a disability and hid it from their friends.

This sort of attitude is why kids with sn get the whispers behinds hands treatment when they rock up to school, and why parents of kids with disabilities feel unable to talk about it. Why shouldn't he discuss his gc? Why should he hide the disability?

This sort of stuff needs normalising, not more parents who think they shouldn't tell. The great elephant in the room.

Yes, two out of three of my kids have additional needs. I'm a lot further down the road than you are bough, and I'm well over the secrecy aspect.

Ericaequites Thu 27-Feb-14 04:07:37

I have Asperger's. I had problems all through school and through until I was forty. After being diagnosed, I was able to get more effective treatment, and am doing better.
It's better to talk about these things.

ThatVikRinA22 Thu 27-Feb-14 04:08:23

my son is now 22 and has AS - but given that in this situation father was so unsupportive of the initial diagnosis it smacks of being a bit of a drama lama - this isnt his information to disclose.

i did not hide DS dx but now , at 22, its up to him who he tells. it was never a secret - but seems insensitive of someone who has been so dismissive to suddenly decide to tell all and sundry in an xmas email!

ThatVikRinA22 Thu 27-Feb-14 04:13:41

also there are people you need to know and those who dont - with DS we took the whole school approach - but that was our decision as parents at that time.

i think there is a need to be sensitive to parents feelings as they are coming to terms with such a dx - me - i have as and so does ds. so did gran and so does brother and so does uncle and so on and so on - but when ds was dx it was up to us who to tell and now up to him.

support was not forthcoming in 1997. no matter who we told. everyone knew better....
but surely at this stage of dx its the parents decision who to tell.

i agree no good comes of secrecy - but this wasnt something for the xmas email to all and sundry without asking if it was ok.

it was insensitive.

Jenny70 Thu 27-Feb-14 04:49:27

I think it was the wrong thing of him to do... but given that is has happened, what do you want to happen from here? Apology, sympathy, cut ties, acceptance of diagnosis???

If you want an apology, I would email/call saying you found out he shared your DS's medical information without your permission, you are extremely upset about this and how could he have thought that to be appropriate? If he treats it in a defensive/joking way, then say that in future he won't be privvy to private details of your life, as he cannot understand that he has crossed a boundary of accpetable behaviour. Would he like you to discuss in an email to all your friends details of his colonoscopy, sexual disfunction etc? The phrase "this was not your information to share" would feature somewhere in my discussion.

If he is genuinely sorry, and did share it because he was struggling with the meaning/implications of the diagnosis and wanted his friends support, then perhaps you can tell him that in future this is not appropriate and draw a line under the incident.

But ultimately it has happened, and you need to go forward - if he can't see that he did the wrong thing then he can't be in the loop for other information that DS might not want shared with long lost family friends that are only seen every 10 years or so. And if your Mum will tell him, then she's out of the loop too....

I'm with those that say its not something that should be treated as a secret. Surely it's better for your family if people are aware of his dx and make allowances for his behaviour.

DustyBaubles Thu 27-Feb-14 04:54:30

I think you need to let go of the 'confidential diagnosis' thing.

Confidentiality applies in a medical/professional setting, but as soon as you put this information out there I real life, it's there for anyone.

You may not like it, but it isn't 'wrong' as such.

How often have you been part of 'oh, have you heard about X, she has Y' type conversations, when X may be none the wiser?

Have your father involved in your life, or don't, but I think you need to get less hung up on stuff like this. People will always talk.

Ohwhatfuckeryisthis Thu 27-Feb-14 05:27:24

Sorry I think it was an inappropriate thing to put in a round robin without your permission. It was for you to tell people when you saw fit,not him. I don't think the op was "keeping secrets", it was her and her ds's business,, no one else's.
But now it has been shared, I agree you have to think how to deal with it.i agree with Jenny.

Do you not get on with your dad, OP? I agree his round robin was not terribly appropriate but your email to him is even stranger. confused

GemmaPomPom Thu 27-Feb-14 06:11:27

I would be very careful how you handle this, as you would not want your DS to think that you are ashamed of his diagnosis. Not saying that you are, of course.

I would let it go.

I do find it odd that the result isn't appearing to be general knowledge. I'd have expected most people you know to know by now.

That said it your news to begin with. I think you're entitled to say to your dad you are extremely upset over how he just went ahead. It your news and you should be able to release how you wish.

But everyone knowing is surely better as it's then normal quicker.

LordPalmerston Thu 27-Feb-14 06:42:38

I don't see what the big secret is

Squiffyagain Thu 27-Feb-14 06:57:21

He's a drama queen and its not his story to tell, but I'd try to chill. You will find yourself jumping the gun to tell people yourself in a few years as it really helps people contextualise whatever behaviours your son shows and stops them getting all cats bum first, and it definitely doesn't do harm to have everyone know it now.

Whilst a round robin is not the way to do it, I do think a dx is better out there - especially in such a young child (think it's different in a teen who doesn't yet know themselves obviously).

At least it saves you the hassle of having to deal with people's pity reactions.

gamerchick Thu 27-Feb-14 07:02:31

Are you ashamed of his diagnosis or embarrassed or something?

Also grandparents are often floored by an autism dx - especially in a young child - and I can understand they need their own support tbh.

I'm not just mouthing off here btw - my own son was diagnosed just as he turned three (& we'd known from age 2 he needed the dx).

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