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.

I would be really angry too. Due to his previous reaction it makes it feel like he is now using it as a piece of gossip.

Having just read your thread you linked to, I think you should cut him some slack. Could it be that he is trying to come to terms with with it and perhaps reaching out for some support?

He should have still asked you if it was ok though and perhaps worked with you on wording the email if you agreed.

When our parents were our age, autism was not treated as it is now, children and adults with autism were locked away in hospitals and treated like they had serious mental illnesses,mthey were treated as dirty secrets, so I can understand older people's reactions to such a diagnosis. Thank god we have a better understanding of it nowadays.

Actually suicidal - I feel almost exactly the same way about my ds1 (who has aspergers). It's a very mild form. He's slightly different to other kids but not glaringly so. It would be quite easy to not refer to the diagnosis and generally I don't - for exactly the reasons you gave. But my family do know. And sometimes with people like swimming instructors or friends. It's not that I don't want people to know, but more that it's not really necessary. It's hard to put into words...

Like I said, it's understandable to be irritated. But only the op knows her father, and if my father had done this I think I would see it as coming from a positive feeling about my ds rather than with any malice intended. I might be exasperated but I wouldn't be livid if you see what I mean - but then I know my dad and I know how fondly he feels about all my children.

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

That was my first though too.

I remember reading your other thread at the time.

I don't think YABU, but, I think you should have a think and then talk to your Dad about how you all feel.

Your Dad is totally out of line. It isn't his news to share.

However, now it has happened I think you should make a virtue of it. At least it avoids the need for awkward conversations with loads of family and friends. Some people who you might not expect May come forward and offer support. I think telling your Dad he should not have shared the info without permission is a good idea but I wouldn't give him too hard a time. I also think it's a good idea to ask to see the exact wording he used in case anyone approaches you and raises it.

Right, I've just got hold of a copy of the letter.

It's all his news and contains brief updates on his 3 children. The bit re us is
'I visited Trucks and Mr Trucks in [tropical place where we live] earlier in the year. TrucksJnr continues to develop but is thought to be slightly autistic. His mother and father are helping him to manage the condition and he is making very good progress'

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.

And to dismiss it as 'thought to be slightly autistic'

Ffs.

DS is autistic, diagnosed autistic. He's 3 now, he was dx at 2. There is no 'thought to be' or 'slightly' about it.

He has physical disabilities as well; he has SPD. (No response was ever received from Dad when I sent him the copy of the occupational therapist report).

We are not in denial at all.
We are involved in a heavy early intervention schedule, we are working with DS new preschool, the friends and play dates we have here all know, mil and my sister and other visitors all know and are kept fully informed (as well as leaned on for support).

Dad has been given more recent updates since he visited us last year just post dx.

He has not followed up on them including as I say the SPD Dx.

This throwaway line is hurtful.
If he is going to write about DS he ought to have talked to us and generally taken more of an interest and been more helpful and supportive.

Instead he belittles and diminishes the DX.

When we are next in UK and on a need to know basis, if they are going to meet us/ds is the time to mention all this to long-time family friends, godparents etc.

If we were attending family functions in UK and needed to explain DS SN to them.

In any case, the info should be given out by us not dad.
It is not his to share, he may need support with the idea that his GS has additional needs but it barely affects him.

It affects DS and us every day.
It is not a subject for gossip for readers of a round robin email.

I'd have been annoyed too, it took me a year or two after DS's diagnosis with AS to start feeling comfortable with telling the world at large, because I was still coming to terms with it myself and I am quite a private person. Also DS said he didn't want people to know. However a bit further along the line I know being open is generally the best thing to do and I am now in the slightly awkward situation where some fairly close relatives possibly don't know and I'm not sure how to bring it up in conversation.

Yes as I suspected before the nature of his disclosure was revealed, totally inappropriate and YDNBU. I suspect any attempt to convey your feelings regarding this to your dad will be futile though.

Hmm, actually after that I feel less as though he was using it as gossip. I agree 'slightly autistic' is crappy, but the rest sounds like he is giving you credit for managing a difficult time really well.

However, only you know your relationship with him and know how to take it.

He didn't get it.
He still doesn't get it
There is no 'mildly autistic': there is no secrecy here or shame but we tell people on a need to know basis who can support us and DS.

This isn't supporting us or DS.
It's actually belittling it. Just as he did when we first told him.

what are you going to do?

I see what you mean. He is shrugging it off like it is not affecting your DS.

That is annoying.

Christ almighty.. I don't think anything he does will be right tbh..

What do you want to happen?

If it helps my FIL was same when DD was 3..said hr couldnt see much there.

Now at 7 he is fully accepting.

YANBU

To various other users,

I am rather confused by your equivocation of "private" and "ashamed".

Here is a list of things of which I am not ashamed, but only mention to selected individuals, to whom it's relevant. None of these things have been placed in a round robin.

My lactose intolerance, my vaginal birth, my experience of breastfeeding, my use of forums, my marks in my recent exams, my sexual preferences in the bedroom and my diagnosis of ASD as a teen.

I'm not ashamed of any of them, but I see no need why Aunty Mavis, who will never even serve food for me in my life, needs to know about them.

I've experienced the way people's behaviour changes when they hear the words autism or ASD, with people who actually needed to know. For example, an SEN co-ordinator who'd treated me perfectly normally the previous day started peppering her conversation with lines such as "of course, when I say a train of thought, I don't mean a real train^". I can handle figurative language perfectly well!

The above is not an isolated occurrence. I fully acknowledge she meant well, but nowadays I prefer to consider the pros and cons of each individual person I tell.

This will go doubly so for my children, if one of them isn't NT. I don't want a single one of my children to be typecast by their extended family and friends, before they're even school age.

I think hard though it is to accept, it is a good thing that he is prepared to have the world know about it and isn't trying to sweep it away, he has chosen unfortunate wording, but that may be through ignorance. His perception might be that it is mild autism or he might be trying to make it more palatable, but I doubt he has done it with malicious intent.

But isn't what he's said a (clumsy) way of saying "this is my grandson, [the psychologists think] he has autism, he's my grandson, he's making good progress thanks to his supportive parents [you and your dh]".

If it's any comfort to you (and I hope it is), had I received your father's letter then I would not have taken it as belittling or minimising your DS's DX. I would certainly have read it as an approving comment on how well you as a family are managing his DX.

My Dad like this - have to be very careful what information he is given as he will tell the entire family and friends around the globe.

I don't see what you can really do now though.

I have a condition I don't tell many people about not because I am ashamed but because people are full of pre-conceived ideas that don't fit me often won't be told differently. So I can see why it's such a huge issue - and very unhelpful.

I don't see what you can really do now though.

I wasn't supposed to say the same line twice there .

I agree with Pooka and also Cinnabar, I don't read it as belittling.

There has been a huge, huge generational shift recently regarding attitudes towards SN, and physical disability. Our parents generation didn't grow up with this, and therefore I think you have to make some allowance if there is a certain awkwardness of expression or language.

OP I know you are having a tough time with this, I remember your thread getting so upset about your MIL coming out to stay - which I hope is all going smoothly.

I am so sorry OP. Your dad was completely put of line there. YES it is up to you to tell people and chose who you want to tell. And YES it is not his role to say it to whatever nber of people on his newsletter.

As for the 'he is a bit autistic...' It's just a way to actually tell people what you think is going on and his little he believed in it. Crap. Just crap.

Having said that there isn't a lot to do about it now. I would be careful in telling him anything from now re your son SN and handle the situation the wAy you see fit. It's just awful when diagnosis is so blatantly dismissed by the very people you need support from. :(

It looks to me as though he put a lot of thought into his phrasing and tried to get it right. If that makes any difference.

I don't know what to do: it's a bit pointless now as its done.
I am going to talk to DH first.
Will be out rest of day so we will talk tonight.
I think it's clueless and thoughtless and selfish rather than malicious. I feel sad about it as well as annoyed.

And glad we live abroad.

"I think it's clueless and thoughtless" - yes you are right, but perhaps it was done with the best of intentions. Many people liken the post diagnosis period to grief, he may have thought in his own way that he was "saving you the bother" of telling people, or trying to show that he is supportive of your family, albeit in a cackhanded way.

FWIW when DS was diagnosed, my parents went into super helpful overload, bombarding me with newspaper cuttings, books, e-mailing me links to info / equine therapy / GFCF diet etc etc - they wanted to help but didn't know what to do. PIL refused to accept that there was anything wrong that a good bit of physical discipline wouldn't put right. I know which approach I prefer.