When do you start to tell people about your ASD child?

[mamma536]

DS has sensory issues, discovered last month when we started to deal with his language regression. We're facing a potential ASD diagnosis and have started therapy.

We've also just started living abroad. It's been a tumultuous few weeks and I had to take a lot of time off work to sort out therapy for DS. I'm lucky that my small office has been so understanding. I don't have many friends here but my work colleagues have been so lovely and I've been able to talk things through with them. I've also told immediate family, a very small number of friends and my line manager in the UK who is also lovely and I wanted her to know early in case my work is impacted further down the line.

I was wondering if I was being inappropriate in some way though, telling people especially at work. I posted elsewhere about struggling to tell my not-so-lovely family and was roundly shot down for being dramatic, that it was no one else's business and I should have expected a bad reaction.

Do parents normally keep this kind of thing to themselves? I don't advertise what we are going through but I'm honest if anyone asks and is genuinely interested, and I find that talking about it helps me enormously.

I posted elsewhere about struggling to tell my not-so-lovely family and was roundly shot down for being dramatic, that it was no one else's business and I should have expected a bad reaction.

What a bizarre response, of course you should be able to tell your family. I’m sorry they were not supportive.

I think the approach you have taken is right and what I would expect; it’s not some shameful secret. The only thing you cannot control is how people react so you have to steel yourself somewhat and be ready for them to possibly tell you about quack cures and make generalisations, that sort of thing. Others don’t really know what to say at all and will say nothing.

I don’t think there is any right or wrong. You do what you feel is right for you as a family. Personally although I don’t do shouting it from the rooftops type approach I also don’t keep it quiet (if that makes sense)

I think you'll get a range of answers.

We tell people about ds mainly because it's already pretty clear that he is different to other children and sometimes it's easier to say he's autistic than try and give a long winded explanation about his behaviour/why he's not wearing shoes/why he still in a pram etc.

On a more selfish note I find it helps me to be able to discuss things around having a child with SEN, not about his behaviour but more about the associated admin etc.

We also have several other autistic people in the family so I grew up with a family that always discussed this openly.

I think if ds was more verbal and self aware, ie closer to being neuro typical it would be different as he might be more aware of fitting in and not wanting to be seen as different. Also he was only 2.5 when we realised he might be autistic, I think it would be different if he had been older when he got his diagnosis.

I ended up talking about it a lot when DD was being diagnosed because I was just struggling to process it. We were right in the middle of "is she isn't she?" and like you I found it really helpful to talk about it. More than that I felt like I needed to: I couldn't bottle up all these questions and worries. This was when she was 2.5-4 and we were going through the various assessments leading up to diagnosis.

If I had my time again I might try to share less, because I do feel it infringes her privacy to a certain extent: but on the other hand we got some really helpful resources/contacts that way (e.g. to other families with autistic girls through friends of friends) and nobody was judgemental or horrible, and I don't believe it's limited her ability to make friends now she's older. In fact, if anybody didn't want their child to be friends with her because she's autistic I'd prefer they stayed far far away TBH. Similarly to the school that made it very clear they didn't want her when we told them: hurtful but better to find out now than after she gets there.

So on balance I don't really regret telling a lot of people back then. Though now the diagnosis is "old news" and we know what we are doing more and have supports in place I just don't need to talk about it as much. The main challenge is making sure DD knows by the time she needs to, without constantly waving it in her face (so far she seems fantastically uninterested, but we do lots of stuff about feelings and different brains working differently, which she does engage with and I think means a lot more to her at this age than the word autism - but we've got all the books/resources ready to go when/if she does show more of an interest in it).

I agree that it becomes a need-to-know basis later on once the diagnosis has settled down.

For us it’s obvious at school that he’s different because he’s the only child in his class that has 1:1 support and is handed to and back from a TA.

Also I have found that some parents who have concerns about their own children will come and talk to me for advice and I will discuss it openly with them.

Thanks all, your posts are so reassuring. I'll give some consideration to who we tell, but otherwise I'll just continue as I have done.

Yeah my colleagues at work and close friend have been amazing and supportive. In contrast my family are more concerned with how they are feeling and trying to reassure themselves that autism can still mean DS is intelligent. They miss the point that the lack of communication is the issue.

My parents did this free online OU module on autism, which I think they found really helpful. My family did find it kind of confusing because a lot of us have these traits so when people said DD might be autistic we were all a bit "huh??" and then we learned more and went "oh there's a name for what we're all like" and it was quite reassuring. Maybe you could send that to some of your relatives if they keep spouting unhelpful stuff?

www.open.edu/openlearn/science-maths-technology/understanding-autism/content-section-overview?active-tab=description-tab

Websites like "Autistic Not Weird" are also quite good for reeducation if you think they're more likely to read something than watch videos!

I told my family when we received the first paediatrician appointment. Ds was older, 14 at the time and it seemed to come as a shock to everyone. Not had any issues with family or friends though.

In Ds's case his traits have become far more visible and impact him much more the older he has got. He seems much more 'autistic' at 15 than he did at 5. I think it's pretty obvious to everyone now.