What to say?

[Mannah]

I have taken some time off work to start EIBI for my dd2 who I suspect has asd.

As she is not dx I did not tell anyone where I was going or why(except my boss). My boss has recently contacted me to say other staff members are asking where I am and if they should send flowers etc and she wants to know what she should say. I am not close to anyone at work and really don't know what to tell them. How much do other parents with children with sn tell people about their children? I was very distressed when I first suspected this diagnosis but she is making progress on her programme and although she is non verbal she clearly wants to communicate and is very affectionate. It is very difficult to get unpaid leave in my work place and I know there will be quite a few begrudges. I am a bit afraid people will think "well its not as if the child has cancer or somthing" (this is what a friend has said to me already). Also, my daughter is only two, we are yet to see what her potential is, why subject her to other peoples prejudices? Its not like they are close family or friends. Or the other hand is my daughter will always be autistic so why not just tell them now? Am I thinking about this too much? Please help

I tell everyone.

Then people at least have a chance to support you and understand her.

Those who are prejudiced will be prejudiced anyway. They will never be your friends anymmore. And they will judge her when they meet her - whether she has a dx or not.

But there are lots of nice people out there who will support you and her.

I also tell everyone. I understand your fear but I think you are underestimating people, I have received overwhelming support and understanding.

SNs are nothing to be ashamed of, and if people do show prejudice that says more about them than your DD and you can adjust your relationship with them accordingly.

I'm very open about DS ASD - most people are very supportive and it's not anything to be ashamed about. There will be people who don't know how to react and some will disappoint you with their attitudes but the majority will be very supportive.
Many people open up once they know and talk about friends / family with a child on the spectrum.

When you are with your dd and other people don't be afraid to explain the approaches you are using to communicate and why, I've had to ask one friend to not wear her rather strong perfume around ds as he reacts badly to some smells - she was fine with it once she realised and know we joke about it!

At this stage (pre-DX). I didn't tell most people about going down the ASD diagnostic route, but put it more in terms of language/social delay/developmental delay. But obviously it's completely up to you what you say to people. And yes, like Cwtches said, you will find a surprising no. of people will open up about their connection with SN.

Never mind flowers... Have an amazon list or a weblink for useful resources that are on your wishlist, and they can send them! People usually want to do 'something' and to 'show' that they care, making it easy for them makes the whole situation much more comfortable.

Plus just by browsing the wishlist, they'll end up being educated about sen, asd, s&l delay and that'll make return to work better cos theyre much less likely to unintentionally annoy you with their ignorance

My colleagues are great with DS, mainly because I bored all and sundry with my random rantings when he was first diagnosed.

I have been very open with my colleagues about my son's ASD (and the fact that I have been taking odd, seemingly random days off while being busy setting up his home ABA programme). However I do work in a mental helath environment so would expect understanding. I will talk to anyone and everyone about him, how the programme is going etc.

Thanks for your comments everyone. My husband has been saying just tell them. Like theLightPassenger I have been telling people she has a non specific developmental delay, but at my last appointment it seems we are close to a dx and the general consensus is ASD. I am fiercely protective of my children and not so great at controlling my temper, this is the only reason I hesitate because a flippant comment will often lead me to say what I really think which is not the way to win friends and influence people or maintain a harmonious work environment. theDudesmummy is it ok if i message you re: working and having a home aba prgramme as I am struggling to see how I could return to work and keep my programme running. Thanks again

Yes please message me anytime.

I am very open about DD's autism and tell everyone.

however, I know a couple of other mum's who are less comfortable with being so open about their DC's Asd.

If telling your work does not feel right for you, can you not ask your manager to tell your colleagues that is is a personal matter?

I also tell pretty much anyone around that he is autistic when we are out and about, if he starts with some odd behaviour etc. He is who he is. (I quite like the idea of the t-shirt I heard about that says, I am autistic, what's YOUR problem? No, I wouldn't really put that on him, but it made me smile...)