Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

138 replies

TrucksAndDinosaurs · 27/02/2014 02:35

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.

OP posts:
fanjoforthemammaries7850 · 27/02/2014 13:17

I have to say though if FIL was making such an announcement, even if he really understood and was feeling upset, he wouldn't admit it so would make things sound minimal.

At 3 many people won't be understanding as issues are more obvious as children get older and people think all 3 year olds scream etc.

Unfair I know. But hang on in there.

fanjoforthemammaries7850 · 27/02/2014 13:18

At three my FIL said "we don't see much evidence if autism at all".

Now he says "there is something very wrong with her wiring"

Blunt but true.

GinSoakedMisery · 27/02/2014 13:31

It is a bit dismissive, maybe said in the hope that the doctors are wrong given how young he is.

He sounds like my mil, who took a few years to take in that ds2 would not "recover" from autism or that we weren't withholding medication to make him right just to claim benefits.

Send him some links to ASD websites, he might actually find information from this era relevant to what he had when he was working with children.

propertyNIGHTmareBEFOREXMAS · 27/02/2014 13:52

Yanbu. How out of order. You can tell selected people yourself if and when you are ready and want to do so.

LatteLady · 27/02/2014 13:57

Trucks, cut your dad some slack.

I am sorry that you are not happy with the letter but in essence it tells the truth, your DS is on the Autistic Spectrum (in truth all of us are somewhere on it). By saying it is mild he is describing how he sees it as currently affecting your son's life as he saw him when he visited. He is in his own way explaining to friends that your son is not a screamer, a rocker or a repeater (I am using these terms very loosely indeed), it is his way of telling them that the the condidtion is invisible but just because you cannot see it, does not mean it does not exist.

My godson is also on the autistic spectrum with MLD, it took his father almost five years to get his head around the diagnosis, his paternal grandma still does not understand, she loves him dearly but just does not understand him.

Your son is not the only one who needs to be understood.

AmberLeaf · 27/02/2014 13:59

I can see why you are upset at his wording.

It is sort of downplaying it, someone once described my son as having 'a touch of that autism' it was a stupid ill informed thing to say, but I know there was no malice meant by it.

fanjoforthemammaries7850 · 27/02/2014 14:04

I wouldn't use the terms " a screamer, rocker or repeater" at all referring to more severe ASD, never mind loosely.

itiswhatitiswhatitis · 27/02/2014 14:04

I would be upset too. I'm annoyed that so many people are accusing you of keeping "a dirty little secret"

FWIW no one on my side of the family or dh's have been told about ds2's diagnosis. It's not a secret amongst my close friends and some acquaintances and obviously school etc. I talk openly with those who I feel comfortable with and those who can benefit ds's progress. When he's old enough to understand his own diagnosis he can talk to who he likes about it.

If I thought sharing the information with family would be a positive experience then I would but it won't so what's the point?

fanjoforthemammaries7850 · 27/02/2014 14:05

Also no we are not all on the autistic spectrum.

People with autism are.

itiswhatitiswhatitis · 27/02/2014 14:07

Oh god yes can we have a "we are not all on the spectrum" campaign please

itiswhatitiswhatitis · 27/02/2014 14:08

Alongside "no you are not a little bit OCD"

hazeyjane · 27/02/2014 14:09

Honestly, I am not on the spectrum at all, the spectrum is used to describe people who have autism, not a spectrum going from 'not autistic at all' to 'severely autistic'.

fanjoforthemammaries7850 · 27/02/2014 14:11

I am actually (unprofessionally) hugely offended by that "he is not a screamer,rocker and repeater" line.

Timetoask · 27/02/2014 14:14

Trucks I completely understand how you feel. My DS is not on the autistic spectrum but does have special needs, severe enough to need a special school.
My parents took it upon themselves to discuss our situation with all and sundry. (different culture, we talk a lot!) I was extremely annoyed.
9 years down the line its all fine, I didn't get into a fight with them because I had enough on my plate already, I just let it go. Now I really don't mind who knows how things happened, there is nothing to hide and its probably best that everyone is aware of ds situation.

TheCurseofFenric · 27/02/2014 14:17

We are not 'all on the spectrum' Hmm

What a ridiculous thing to say.

hazeyjane · 27/02/2014 14:18

The 'screamer,rocker, repeater' line is pretty foul. I don't know what you mean by, using these terms 'loosely'?

Even if someone does all these things, it is not great to describe someone by actions that may be part of their condition or they may not be able to control.

fanjoforthemammaries7850 · 27/02/2014 14:19

Not to mention the fact that not everyone with severe autism does them. My DD does none of them.

Patchouli · 27/02/2014 14:24

I don't think there's a lot wrong with what he's said.
He does seem to think that his Grandson is within the milder range of the spectrum rather than severe. But he was swimming with him and spent time with him. Yes perhaps any communication difficulties and physical disabilities should have been clearer to him.
He sounds proud of you really.

Burren · 27/02/2014 14:30

I think sharing someone else's diagnosis with a large group of strangers and distant relatives, as well as people you've chosen not to tell yet, is completely inappropriate, and the wording is (possibly unintentionally) insensitive - it sounds slightly like 'round-up of the year: X has a new job, Y has had twins and whoops, Z's son is autistic' - but then those round robin letters are never sites of penetrating psychological acuity or interest. I've yet to read one that didn't make me want to flick the writer in the eye.

I don't think you are unreasonable to be hurt and angry. He should have asked.

WhoKnowsWhereTheTimeGoes · 27/02/2014 14:30

I can sort of see what he means too, my son has AS and according to his diagnosis he is not borderline by any means, he has a great deal of impairments. However, to the untrained observer he does appear to only be mildly affected, he goes to mainstream school, he chatters away fairly normally, he has friends, he goes to activities and holiday clubs, he has very good coping strategies. I wouldn't be at all upset if someone in the family described him as having mild autism as that is how he presents. It wouldn't be appropriate in a professional context, eg school, healthcare, but as social shorthand for how he generally presents it is acceptable.

bialystockandbloom · 27/02/2014 14:38

Of course YANBU.

It's got nothing to do with being in denial/ashamed of your ds. It's got everything to do with it being your call who you tell, and when, and how. Not his.

He was being very thoughtless about the impact this would have on you.

No, not everyone is on the autistic spectrum. Not everyone has autism. Only people with autism have autism. "Screamers and rockers" Shock

TillyTellTale · 27/02/2014 14:50

If the "autistic spectrum" includes everyone now Hmm, it is intellectually dishonest to pass that off as "all of us are somewhere on it".

In truth, if everyone was placed on a new spectrum of "neurotypical to autistic", I think we'd see a hell of a lot more people being placed at the extreme end of the NT side than the autistic side. Let's say that you only count as having an autistic spectrum disorder if you place between the exact middle and the end of the line on the right, i.e. you have one.

It would look like this
NTAutistic

Imagine that the proportion of the population which fitted each point on the spectrum would be represented on it with by little black diamonds. The NT side would have so many blobs on it to represent the population, that it would look like a tiger moth caterpillar. The other side wouldn't.

tiger moth caterpillar

propertyNIGHTmareBEFOREXMAS · 27/02/2014 14:55

Yes, nothing to do with 'dirty, little secret'. How questionable and nasty that some posters even use this description. It is about OP respecting her son's medical confidentiality and treading carefully with regards to how, who and when to inform.

saintlyjimjams · 27/02/2014 16:09

He is in his own way explaining to friends that your son is not a screamer, a rocker or a repeater

Jesus christ. FFS - these are PEOPLE you are talking about Angry - not fucking vegetables.

Trucks - I can see your point of view - dh hated people knowing about ds1 when he was first diagnosed because he didn't want 'pity' (his choice of words) and he didn't want ds1 being pitied. He still doesn't tend to tell people now (I am the complete opposite). It did lead to a few awkward occasions when younger - also I think it's hard for grandparents - especially if they have limited contact.

screamer, a rocker or a repeater Angry Angry Angry

mercibucket · 27/02/2014 16:13

i would see it as him passing on his news about his family and important things that have happened
when my ds was seriously ill i know my parents reached out to other family for support. i couldnt help them with that, i had enough going on. i didnt see that as betraying medical confidences. perhaps it depends on your overall relationship

wrt the spectrum thing, and i ask to understand not offend, many people in my family are diagnosed but i see a whole ton of traits in some of the rest of us, who i dont think are necessarily on the spectrum. i did always see it as relevant though, like we were kind of edging near. is that not how it would be?

Swipe left for the next trending thread