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

[TrucksAndDinosaurs]

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 -
http://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.

[saintlyjimjams]

Autism is many different things - so not necessarily. In some types of autism the traits appear to have been inherited directly, in others maybe a pre-disposition to becoming damaged has been inherited (multiplex vs simplex)

[candycoatedwaterdrops]

Trucks I can totally see why you are upset, not only with him including the diagnosis (unnecessary in a round robin!) but the wording wasn't great either. Maybe it is him coming to terms with the diagnosis but he should have considered your feelings and your DS's feeling as paramount. I wonder if your dad was so wrapped up in his own emotions that he completely forgot to consider that it is probably 1000 times magnified for you, as DS's parents. I agree with your last post that it was thoughtless rather than outwardly malicious.

and for you and breathe.....! x

[NewtRipley]

Trucks

I can see why you are annoyed and frustrated. The email does smack, to me of and his striving to accept without really understanding. It's the sort of think my not-very-psychologically-aware dad would do.

Tilly' - good post

[NewtRipley]

sorry wording above was rubbish "The email does smack of his striving to accept without really understanding"

I agree with candy

[NewtRipley]

I also agree that round-robin letters aren't sites of great psychological acuity, in many cases.

[GinSoakedMisery]

LatteLady, your post is totally offensive, not once, but twice.

We are not all on the spectrum. Do people honestly think that?

And as for screamer, rocker, repeater, well...I'd rather not say what I think to that.

[Beastofburden]

My youngest child is a screamer, a rocker and a repeater. Goody goody. Should I dump him?

The older generation who had no experience of this are a bit clueless. I dread to think how my ILs gave out the news of our two DC's disability. But in their attempt to say, "not what we wanted but or are used to, but we will be nice about it and try to love them anyway" I am quite sure they will have said toe-curlingly awful things. They meant well, or rather, they thought that they meant well.

That said, I am further down the line than you are- my disabled DC are approaching 18 and 20. I no longer see this as "confidential medical diagnosis" territory. That's for piles, alcoholism and the clap. I mean this nicely- you are at the all-encompassing stage, where you invest in loads of therapy and it becomes a hugely important thing in your life. You are terribly offended that your parents have responded in the wrong way to it all. I am so, so much older and further into it than you are, and from where I sit it is just good old normal life, hey ho, no secrets, no drama, just plans for their future and people who variously help out.

[GinSoakedMisery]

As is mine Beast. To the asylum with them!

[Beastofburden]

actually, do asylums do the odd Sunday afternoon respite very bad and lazy mother here

[GinSoakedMisery]

[MrsFlorrick]

Trucks!! What on earth was he thinking?

Hope you and your DH can get through it together and it won't affect how friends and family treat your DS.
I'm sure it won't. Most people are more sensible than that.

(Holds hand)

[LordPalmerston]

I still don't get the deal with the disclosure . How does it compare to a physical disability?

[Bunbaker]

The link in your first post doesn't work so I may have missed something.

Did you actually ask your dad not to tell anyone? If not he would have wanted to tell everyone his news in the letter, which would include all the members of his family, including his grandson. He sounds like he is making light of it, but perhaps didn't want to make his letter sound too downbeat.

I think you need to cut your dad a bit of slack and tell him not to write about his beloved grandson if you don't want him to.

He clearly doesn't understand what you are going through and that is perhaps why he hasn't made a big deal of the diagnosis. He also doesn't have to deal with it day to day which will also be why he underplayed it.

I think you need to explain in detail to your dad exactly what your son's diagnosis means to you.

[Madamecastafiore]

I can't understand the problem to be honest. If my children were diagnosed I think I would tell everyone hoping for understanding and support for both myself and my child.

[Bunbaker]

When DD was a baby and had a tracheostomy MIL told all her friends and family. OH's auntie had DD added to the prayer list at her church. I was very touched that so many people cared.

[Caitlyn2014]

TrucksandDinosaurs, you posted on page 3 that your sons autism is not slight or mild, that there is no such thing - I wholeheartedly agree. However, in the first post on the original thread you linked to you said at the time 'his symptoms are mild'. So given that you have been confused about things is it at all possible that your father is also? That you told him the symptoms were mild and him now saying your son is slightly autistic is merely a case of semantics. I have an adult son who's difficulties are great, as about as bad as it can be when it gets to autism and I find absolutely nothing wrong with someone who doesn't really know anything about autism referring to someone else as being slighty or mildy autistic, they are both terms that come up time and time again on autism forums frequented both by parents and those who are on spectrum. Usually when things are explained people then do understand that though someone like my son had the most dreadful of difficulties it doesn't mean to say that someone with Aspergers or HFA has difficulties that are any less than his.

As for your dads letter to others - he came across to me as a man of his generation and without much exposure to autism being very positive about his grandson, and very proud of the way you and your husband are helping him.

I think there is history between you and your dad and this is your chance to have a go at him and wallop him with your misplaced anger.

Give yourself a break. Give your dad a break. You are both only human.

[TillyTellTale]

MadameCastafiore but you haven't been in this situation, then? I'm assuming you haven't experienced the range of 'support' one gets upon such a declaration?

[VelmaD]

My grandparents are a bit like this. They tell everyone about my eldest ds having ASD. But to them its a new thing that they've only just started to understand and ask questions about z- they're in their 80s. They also love showing off how well he is doing at school, with having ASD. Sometimes they get the wrong end of the stick, but sometimes they do things like save an article in womans weekly for me as they've read it and that means they're trying to understand more which kind of cushions the inappropriate stuff they can come out with!

I think yabu a bit, and overreacting a little. But only a bit.

[bialystockandbloom]

I think the point is not what Truck's dad said about miniTruck, but the fact that he said something at all.

I'm completely open about my ds's autism (when it's relevant), there's no issues of hiding anything, but that still doesn't mean it would be ok for someone else in my family to take it on themselves announce it to the world. Especially as in Truck's case, she hadn't yet had the opportunity/reasons to tell even other members of the family herself.

[Joysmum]

We do not live in the UK so these people who got the email are not in our lives. They are unlikely to ever meet DS or see us. There was no need to mention DS dx at all.

So if they aren't in your lives and you are unlikely to ever meet them I think you are being unreasonable. Your dad I'd is sharing with his friends, not stealing your thunder or taking away your ability to tell the people in your lives, or not, in the way you see fit.

You're being OTT

[bialystockandbloom]

Perhaps Trucks doesn't like the thought of unknown people discussing and prejudging her son.

[Bunbaker]

In that case she should have asked her dad not to mention it. It is only natural for grandparents to talk about their grandchildren. Unless he has specifically been asked not to mention the autism then he wouldn't realise he had crossed a line.

It seems to me that there is a communication issue here.

[bialystockandbloom]

Oh fgs it's a really disengenuous line to say all gps talk about their gc. This isn't him passing a piano exam, and this wasn't OP's dad talking to a friend in RL - this is announcing to all and sundry by a round robin without thinking first to ask OP if she was happy for all and sundry to know. Massive difference.

[Bunbaker]

I don't agree bialystok My cousin sends out round Robins and talks about the good and not so good things that have happened to members of the family. In fact, only one of the round Robins we had this year from friends and family had nothing but positive news in it.