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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To tell people about dds diagnosis?

50 replies

annikins37 · 12/07/2014 18:36

Dd has recently been diagnosed with HFA (the new name for Aspergers). I think it might be useful at times if it were more generally known so maybe people would be more understanding of her foibles. DH disagrees and doesn't want her to have 'the label'. Obviously wouldn't do it without his agreement, but wanted a consensus on whether MNers thought it was best to tell, or not tell...

If you knew, would you encourage your dc to have a little more understanding if they had had a spat with mine as she gets upset more easily, or just tell them to leave mine alone in future and not be friends with her as you know spats might become a fairly regular thing...

Would you want her round your house for playdates? Etc etc

So, WIBU to tell people?

OP posts:
IsItMeOr · 12/07/2014 18:41

Ooh, good question. Will watch with interest as this may be an issue for us if 5yo DS gets a diagnosis of some sort.

Depending on your DD's age, I think it could be good to ask her before sharing with anybody else outside your immediate family. Not sure that would work with one as young as our DS though, as I don't think the question would make any sense to him. But a teen could be a different matter.

Original poster
annikins37 · 12/07/2014 18:42

Sorry, should have said, she's 7

OP posts:
Muskey · 12/07/2014 18:44

It is an interesting question and my heart goes out to you. I am not a lover of labels per se but I do think as a diagnosis they serve a purpose. I think what you tell people depends on how old dd is and whether she is mainstream school. If I were you I would tell a select number of mums that you can trust so that if there are problems their dc actually might be able to help diffuse things or at least have some understanding of your dc issues.

IsItMeOr · 12/07/2014 18:44

And yes, would be happy to have her around our house - although I would want you to let me know what to do if anything kicked off, if you weren't going to be coming too.

Littlefish · 12/07/2014 18:44

It don't think you're being unreasonable, but I can also see your dh's point of view (sits on fence!).

CharlesRyder · 12/07/2014 18:45

Personally, as an SEN teacher who has taught in circumastances where the child and family are very open about HFA and those where it is actively hidden, I would say being open is better all round.

The DC are treated with more understanding in school and can learn about the condition themselves when old enough which helps them to manage it and manage others.

LongTimeLurking · 12/07/2014 18:45

I would only disclose the information on a need to know basis - teachers, childminders, etc.

Muskey · 12/07/2014 18:45

Sorry meant to add schools being schools people usually find out anyway

MrTumblesBavarianFanbase · 12/07/2014 18:47

There are issues around whether she would want you telling people, but as a potential parent of a friend or classmate I would probably, or almost certainly, make more or allowances. I think it could ne helpful to tell, to avoid people assuming she's "naughty" if that is relevant... but I don't know whether it is "the right" thing to do - if there is such a thing.

KneeQuestion · 12/07/2014 18:48

Definitely best to tell.

I think your DH needs to work through how he feels about having a child who is autistic.

HauntedNoddyCar · 12/07/2014 18:50

We're in the same situation apart from not having a formal diagnosis. School are convinced so we'rerunning with it.

I have told the parents of her friends we see a lot but mostly they know about her foibles anyway. I did tell another mum when she was going on a first visit. That went well luckily.

I don't have a rule yet though. School advised against telling Dd too much. Not sure I agree with that. And I don't want it to be playground knowledge particularly amongst the children.

Tricky isn't it?

Birdsgottafly · 12/07/2014 18:50

My middle DD's best friend has HFA, they are now 19.

It helped that her issues were known, so the problems she had with her Peer group could be explained, otherwise she would be isolated.

My DD stuck up for her a lot, but it did hurt when her friend didn't show any loyalty, at times, but it didn't end the friendship because we understood why.

By around 9, my DD and others totally understood.

What helped was my youngest (now 16) has Moderate LD's.

Again I've found the best policy is to be open.

I think it's the only way to get rid of labelling and connotations.

isla2009 · 12/07/2014 18:51

Hi annikins

My son was diagnosed with autism and I tell most people. I find it helps them understand his behaviour and be a bit less judgemental when he's having a bit of a meltdown. I feel most people would be judging anyway and labelling my kid regardless - its just that the label would be 'naughty', 'spoilt' etc and that would upset me far more! I have found most people have been incredibly understanding once they know. My son is only 5 but we have had no problems with playdates so far - I'm hoping this doesn't change as he gets older.

X

RoaringTiger · 12/07/2014 18:51

My dd was diagnosed hfa and anxiety earlier this year, we've told her and our youngest of the diagnosis, schools etc and a few parents at school know too. It is something we are happy to tell people if the need arises (ie speaking to a parent and they mention a quirk, someone questioning he quirks when we are out and about etc). We don't really see it as a 'label' it is for us a medical diagnosis and a reason as to why the quirks are there, it's important for me that dd feels no shame as to having the condition, it's no different to the asthma she has that requires a pump and by being open about it I am hoping it will help raise awareness, educate and by default make people more accommodating to her needs. We by no way run round telling everyone we meet but we don't shy away from telling people if the moment seems right.

Cherrypippin · 12/07/2014 18:55

My ds was finally diagnosed a couple of months ago and we told all our friends and family. It was a relief for me as whilst nobody said anything to my face I'm sure there were a few who thought he was just badly behaved and we were useless parents.

Original poster
annikins37 · 12/07/2014 18:56

Thanks everyone so far - really helpful to have lots of views, please keep them coming! Dh and I probably also have hfa too so we are not good at judging how other people would react to things.

Further info to those questions above - she is in a mainstream school and doing so well the teachers still don't really believe there is any problem even after diagnosis...

Currently she has a few very good friends, but I know spats are frequent. At the moment they are forgotten 5 mins later so fine, but I am concerned about whether that will be the case as they get older.

She knows about her diagnosis and how hfa can make some things more difficult for her. She is not at all averse to people knowing, but we are concerned she is a bit young to make that decision and wouldn't know the potential consequences.

OP posts:
Original poster
annikins37 · 12/07/2014 19:00

Cherrypippin - about other people thinking we're just useless parents - I totally get this - I suppose I'm trying to make sure I'm not just tempted to tell people for my own reasons, but that it's genuinely better for her.

OP posts:
OnesEnough · 12/07/2014 19:06

A fiend of mine has a DS who is also 7, and my DS is 7. Its lovely because they have known each other from birth and are still good friends now. Anyway to get to the point, this little boy was diagnosed as being autistic, and knowing that has definitely helped in terms of being able to understand and help him if a situation arises where he gets upset etc.
No we would never stop play dates, he's a great little boy.

insanityscratching · 12/07/2014 19:06

I don't disclose my son and daughter's autism to anyone who doesn't need to know. Obviously their schools know ds attends an specialist school and dd a mainstream primary but I believe ds and dd have a right to privacy and I respect that. If they choose to share their diagnoses later it will be their choice.
Ds is 19 and chooses not to and dd is 11 and has never mentioned any difficulties or concerns that she has any "differences" and so as yet doesn't even know she has a diagnosis (given age 2) and tbh when the ed psych and autism outreach service couldn't pick her out in school then I don't see the need to tell her when it might shatter her self esteem and confidence.
Ds and dd have no behaviour or learning difficulties and so tbh no one ever ponders whether there may be a problem. Only other parents of children with ASD could probably pick up on the subtleties I think.

tumbletumble · 12/07/2014 19:14

I know three children with autism or HFA and I have noticed a massive difference in their parents' approach to this issue - ranging from telling everyone in sight, to telling only teachers and close friends and rarely mentioning it with them. So I don't think there is a right or wrong answer. It probably depends partly on how far along the spectrum your DD is, and how obvious it is that she is 'different'. Personally I'd go for the more open approach.

Original poster
annikins37 · 12/07/2014 19:20

I think the older she gets, the more obvious it's getting, tbh. To us it's blindingly obvious and we were slightly surprised the teachers were so adamant she didn't have it before diagnosis. I think it is becoming obvious to some slightly older children she spends time with too - 8/9 year olds. Not so much what it is exactly, but that she is not like them.

Not really sure how far along the spectrum she is - we don't have the full report yet - she is high functioning, but in the assessment apparently her imaginative play was 'non-existent'...

OP posts:
Goblinchild · 12/07/2014 19:29

I've always been open about DS's diagnosis, and he's comfortable with it too. It explained a lot of issues and weirdness for him, things made sense when he realised that everything was filtered through the lens of AS.
Without his label, he'd never have accessed the help he needed in MS as he has no other learning difficulties or co-morbids, but for many teachers it was a key to understanding why things kicked off and what was necessary to prevent them.
That said, it has to be a decision for the individual parent and child to make.

Goblinchild · 12/07/2014 19:30

Oh, and secondary were so much more switched on than primary. Apart from his fabulous Y6 teacher who totally understood.

fanjoforthemammaries7850 · 12/07/2014 19:35

Its not a "label" it's a diagnosis.

And nothing to be ashamed of.

And people who would shun her based on her diagnosis are best avoided anyway as they wouldn't be understanding about any behaviours caused by it.

Bottom line.

Cyclebump · 12/07/2014 19:41

I teach at a music school. A parent came to me last year and told me her DD had been diagnosed with Asperger's. She thought I should know and, as she was unfamiliar with the condition, she wasn't sure what it meant in terms of her child staying in our lessons etc. I let her know that I have taught several children with autistic spectrum disorders and Asperger's, I made clear her daughter was always welcome, a joy to teach, and, as far as I was concerned, nothing had changed.

She was hugely relieved and, for her, telling me gave her a a bit more info and a lot of reassurance.

If you wan peopl to know, tell them.