To tell people about dds diagnosis?

[annikins37]

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?

DS2 tells everybody he meets, usually within the first two minutes. He sees it as a positive part of his identity.

Two of my 8 year old's best friends have HFA. One took a while to get his own head round the idea, but is now happy for people to know, and it does help to understand him and plan to avoid things he would struggle with (eg spontaneously asking another friend to join the playdate).

The other doesn't know himself and his parents have told a few close friends but lots of people don't know including my DS who is probably his best friend. They are very uncomfortable with the label. Personally I would rather be able to talk to DS about it. It probably seems at the moment that we accommodate this friend's preferences much more than everyone else's because we aren't able to explain that they are more than preferences. In fact we don't need to be able to talk about a diagnosis - but it would help if we were able to say "X finds that frightening/really difficult". But his parents aren't comfortable even with that.

Having said all of that, both of them are lovely valued friends who come to our house a lot. A diagnosis doesn't change that.

Firstofhername - ha ha, yes, so does my dd currently (sees it as a positive thing about herself!), and I don't want that to change. It has been a little tricky explaining to her why we are not telling everyone straight away...

She definitely found it a help to know about it when she was getting frustrated about problems that she could see she had, but her friends didn't.

It does sound like the majority of you would tell as and when it seemed like it would help, ie not shout it from the rooftops, but certainly not hide it. That is my instinct, but as I said, I don't trust my instincts...

As a parent, If our kids were close then maybe it would be good to have guidance from you. Totally agree with the sentiment that anyone who'd minimise contact upon being told isn't going to be worth knowing anyway ;)

In the workplace, I think I have been responsible for people with HFA, but working from a position of ignorance. After finding it difficult, I did get some advice from a colleague which really helped. Purely from that perspective, it has to be a positive thing to increase awareness.

tbh, if you insisted on telling me it would worry me unless you told me the reason why you were telling me and I'd only stop worrying if I agreed that the reason was something harmless (it sounds probably harmless, but then I don't actually know what her foibles are). I'd be thinking...

What does that mean?
Why do I need to know this?
Am I able to handle whatever it means?
Do they have higher expectations than usual about how I should interact with this child?
If they have high expectations I don't know if I'm up for whatever they want of me.

Now I expect to be flamed for being so honest. I get flamed for most things.

lljkk - I am certainly not going to flame you. There is no point in asking for opinions if you don't actually want them!

And I think it would be fine to ask me those questions, which I would be happy to answer if my child was coming to your house to play. It sounds like you don't know anyone with autism, so how could you be expected to know what it would involve to look after them?

Having said that, I would be disappointed if after me explaining it, you still didn't want her round, as I really don't think she's too much of a trouble mostly. But as far as this thread is concerned, I would rather you were honest and said you would not have her round if that is the case because I need all the views!

Thank you for your message.

lljkk, isn't that the same set of things you'd worry about for something like an allergy though? I do apologise, because that's not a great analogy.

Say another parent told you that their kid really loved wearing their sandals. You have them over, but it's raining outside. You'd just put a bit more effort into telling them how great jumping in puddles with wellies is, don't you?

I'm a little with lljkk. I would wonder what they want me to do exactly? Give allowances for unacceptable behavior? Treat them differently? If someone told me their child was autistic, it would not make me any less upset or angry with the parent for not intervening if DD got bit or hurt because of their melt down.

Really, I don't know much about the spectrum outside a few Aspie friends, who don't act too much different aside from not understanding sarcasm or dead pan humor.

I wouldn't stop DD from hanging with your kid if I knew, but it wouldn't really change the rules about sharing, taking turns, etc.. in our house either. If that makes sense. But I would want to know the best way to help them have a good time at the house to set them up for success with those rules, if that makes sense.

It's not a label it's a diagnosis'
Totally agree with this, you would inform if it was any kind of physical diagnosis?
You only have to look at AIBU for the last couple of weeks to see the judging according to childs behaviour and the responses of people wondering if the child had SN or was acting up.
Make it clearer and easier for your DD.

It's not an issue for us. My DD is 9 and one of her friends has HFA. She's been friends with DD since they were 4.

My best friend's son is 3 and about to get a diagnosis. It's far more common and far more understood today. Once upon a time it was something to hide...not now.

If people keep hiding then things can't change.

Tell your DH that. When your DS grows up and is an adult, we want the whole world to understand and accept it...not hide it.

It's sometimes more useful to say DD is a very black and white thinker, or DD can be anxious if plans change unexpectedly or DD needs clear and simple instructions, or DD loves facts or whatever is pertinent, rather than telling the host of a playdate DD has HFA when said host has no clue what that means in terms of interacting with DD.

One of DD's friends has HFA and her parents are very open about it. Her Mum came into her DD's class to explain what it means and spoke to friends in other years including DD.
As for invites to play - yes, of course. Friend has an open invite to come and play but she's not totally comfortable with being in a strange house at the moment, even with a parent there. If that time comes then she's very welcome. I would want a parent with her though, at least for the first couple of times so I can learn how to sort out any problems that might come up.

No advice, but plenty of sympathy. I've just been diagnosed as an adult with HFA, and it's really hard to work out whether it's better to disclose or keep it quiet :(

Again, thanks for all the messages, they're all helpful.

SquigglySquid - I appreciate your honesty, but to be honest in return it sounds like she might struggle at your house. Not at all that I wouldn't intervene if she hurt someone (not that she ever would, actually), and not the taking turns, but would you alter any of your rules for her?

That's precisely the point - she is rigid in her thinking, and can't help it, so you would need to be flexible in yours. Eg she is a very fussy eater as a result of it, and if your rule is your dc have to eat veggies, and you tried to extent that rule to her, she would become very upset. It is not that she is spoilt, but you would have to accept that if she refused to do something you asked of her, it would be for a good reason, and trust her/ask her why instead of expecting her to just do it.

She also would in general be more easily upset by smaller things than her friends, and again would need a level of understanding rather than it being written off as a tantrum. (ie help with mediating, I don't mean her getting all her own way.)

I am very grateful for your message. Just wondering, those of you that would initially be nervous of having her for a playdate, would that description of the sort of 'extra care' put you off having her?

Runesigil - totally agree that that info would be very helpful for host. Just thinking about how often I may have to explain that is making me think about getting little cards printed! Your explanation is very concise and accurate - mind if I borrow it?!

Statistically challenged - that's interesting - what made you decide to go for a diagnosis? How did you go about it? Not sure if it's worth dh and me doing the same!

I'm afraid I have no advice for you about whether to tell, as I have no idea! But good luck whatever you decide...

My DS's two closest friends have SEN. With one, his mother told me when he was diagnosed, with the other it has never been mentioned but he goes to a non mainstream school. I find it really helpful to be told of any particular needs, allergies, foibles or dislikes of any child I am 'looking after' (at my house, for a play date, I consider that I am looking after them). I don't think you necessarily need to say dc has been diagnosed with x, but just to let people know whatever they need to know for the occasion...

My experience (5 kids with autism) its always better to tell

I was having problems at work which seemed to all be about how I communicate, how people perceive me, "attitudinal issues" etc which I just couldn't understand.

I'd vaguely suspected for a while, did some digging in to how it presents in women and realised it was very very likely. Went to GP with a list (LONG!) of my "symptoms" and he agreed to do a referral for possible diagnosis. The process was going to be really slow (like 6 months before I would see a specialist) so I asked to be referred privately - the private referral here is to the same person who heads up the NHS adult autism unit so a real specialist.

I've literally had my official diagnosis for less than a week. I've told my boss and my husband and that's it so far.

I haven't read the thread, so apologies for repeating if others have said it.

I'd tell people. As another parent, it would help explain any problems she might face, so I'd be more tolerant, not less, if there was an issue. If she had a fit over something and I thought she was just being badly behaved, that would be when I'd think twice about having her back, IYSWIM. But knowing she might have a problem (I mean run into a situation she was unhappy with and not know how to deal with it, not that the diagnosis is a problem) I'd be more likely to check with you first (is there a situation which might upset her, for example) and try my hardest to avoid it so as not to put her in an uncomfortable position to begin with. Hope that makes sense. I'd also be encouraging my kids to be more tolerant.

As someone who runs workshops in the holidays, having a diagnosis is massively helpful. It means you know which kids you need to keep an extra eye out for. You can enlist extra adults if you think they may need a bit of extra support, or simply closer supervision (having had a kid with autism who had a tendency to bolt, I needed to have an exa pair of legs on hand to go after him!) I even like to know about dyslexia, because iI want to know if a child is likely to get stressed if handed some writing to do. It doesn't mean they get treated differently, but that I can be loitering nearby and keep an eye on their reaction, to reassure them if they get worried, help if they want it or just whisper quietly that if they don't want to do it, they don't have to, as long as they have fun.

Long and waffle. Sorry.

Can I just say, you all sound very understanding, lovely people - I hope that is the reaction we get if/when we go public!

I told people about my DS’s Asperger’s diagnosis on a “need to know” basis. Staff at school and out-of-school activities. Parents of school friends. And family (because we share that kind of info in my family anyway). Now DS is 16 and it’s mostly his decision whether to share or not.

I usually explained the specifics of what my DS needed along with “because he has Asperger’s” so people would know what was involved and why. I had to be pretty helicopter-ish anyway because his behaviour could be difficult, but telling people he had AS helped them realise why I needed to hang about etc. Most people were not judgy.

And I had no choice about telling DS – the child psych said it in front of him when he was 6. I was a miffed at the time but I explained it afterwards to DS and it probably saved us a world of trouble later on. He’s always accepted the diagnosis, helped by the very open and accepting attitude of the staff at his school. Some kids who don't hear about it until they're older can go into denial about the diagnosis. But you do have time in hand. Your DH may need a while longer to get used to the diagnosis himself before he feels OK about telling other people.

My dd has mental health issues and I find most people to be very understanding but only if they KNOW, otherwise it's not reasonable to expect them to accept her behaviour!

Hi annikins "Runesigil - totally agree that that info would be very helpful for host. Just thinking about how often I may have to explain that is making me think about getting little cards printed! Your explanation is very concise and accurate - mind if I borrow it?!"

My pleasure, use anything you need. You could have a few different versions depending on the occasion, some could include I don't get jokes very often, I'm very blunt, I'm clumsy at socialising, Please give simple instructions etc.

It may well be worthwhile adding things that are not easily picked up, the food issue for example has to be understood by the host as not just another fussy spoiled child that will come to no harm if they ignore your instructions.

The most important thing for other people to notice and understand in my experience is the transition into meltdown. It appears to them to be bad behaviour and every instinct if you've only known NT kids is at that point to be stern and tell them to behave, but for kids on the spectrum it's a sign of overwhelm, so instead of a reprimand at that point, the ASD child needs calming down, a quiet space and understanding until they've had chance to process everything that's going on.

Popular TV helps with a short explanation people can remember, despite the sweeping generalisation,
I always think Sheldon Cooper behaviour = ordinary
Kevin the Teenager behaviour = a cry for help because of overwhelm.

A lot of the replies on here are from people who do have experience, I'm not sure the outside world will have such a high ratio, but all you can do, like the rest of us is try to have your child's needs met with a little understanding. Autistic spectrum disorders, learning difficulties and disabilities are very much more publicised in the last few years.

The Special Needs Chat forum is a mine of information and support www.mumsnet.com/Talk/special_needs_chat