How widely do you share your/your child's ASD diagnosis

[Ilovecrispsandbiscuits]

If you or your DC have ASD how widely do you share this with people? Has sharing been helpful or have you regretted it?

DS(11) has a very recent diagnosis (2days ago) and DH and I are unsure how quickly and/or widely to share this. We will talk to DS about it tomorrow and want to think about who else to tell and when. School obviously, and family (though I think we need time to process it all first - husband disagrees).

But unsure about what to advise DS about talking to people at school about it (it's a new school and few close friends). Then there's things like his football club - it might be useful for them to know and might explain some of his behaviours, but also maybe it's nice for him to just be him there with no label attached as he is managing well enough there.

There is also a younger DS (7) in the mix - do we tell him and if so can he be trusted not to just blab to all and sundry! He is a bit of a loose cannon! Any advice would be fab - trying to get my head round it all.

Ds has ASD. I think you can take time to get used to it, but honestly you are carrying some shame regarding the diagnosis that you will need to process. Imagine he had diabetes who would you tell and why?
Its very hard to get everything just right. You’re all human.

Interesting you talking about carying 'shame' about the diagnosis. I don't want DS to feel ashamed about it that he has to hide it - absolutely not. But at the same time due to the nature of his asd I worry he is at risk of telling the 'wrong' people at school and it could actually be used against him leading to bullying etc.

My 9YO DS is autistic. We told school and family. I had to tell my work because of time needed for appointments etc.

I agree with you about waiting to tell family. I was disappointed with how my family reacted initially. My parents are the sort who don't believe mental illness existed in their day. Which is funny because since DS diagnosis, I think I can tell which side of the family it probably came from. 🤔 I had conversations full of 'Well we're all like that' and 'You did the same when you were little' without them accepting that our entire family is probably autistic! Although that has since changed. But in the early days when it was a bit raw, I wanted support and understanding and got met with a brick wall.

I've left DS to decide what to tell his friends etc. He enjoys reading and learning about autism which has helped him with that kind of stuff.

You can tell staff at football discreetly. We've done this with his swimming coach to explain why he does his own thing sometimes instead of what she asks.

DS is 10, we're both really open about it, always have been. There really is nothing to be embarrassed about or hide.

Take your time to digest the diagnosis. Your son is still the same child he was before.

My ds is 5.5 and although he's verbal and at main steam school, his autism is becoming quite obvious to those who know him well. Family members see his struggles so it won't surprise them when he is diagnosed.

I think maybe those who see his difficulties need to know and those who aren't important don't need to know?

To add, I'm diagnosed autistic and only tell people when it's relevant. But there is stigma to it, I think. I've been told I'm doing "ever so well."

So you don’t want him to feel he has to hide it, but you feel he should hide it from some people. I think this is the sort of thing you need to think through. It doesn’t really make sense (but everyone gets in these kind of muddles). Early days are very difficult and you will be all over the place.

DS was quite young when diagnosed. We told only on a strictly need to know basis and kept it very tight because we wanted him to have some control over how it was shared when he was old enough to understand. He is now 10 and I ask him if I want to share with his friend’s parent for example. We still do on need to know but more loosely. My DB who lives abroad and wouldn’t have anything helpful to add doesn’t know because he doesn’t need to, but a local friend whose opinion I needed on school choices does.

@5zeds you've summed it up nicely 😂 certainly am in a muddle. I want to get my head round it before I talk to DS.

Children don't bully autistic kids because they have an autism diagnosis, they bully them because they're autistic.

There should not be anything shameful about autism and teaching children that it's a secret is doing just that.

Oops name change fail 😬. Certainly am in a muddle about it all at the moment!

What does it actually matter who knows? It's not going to make a difference and others options of the diagnoses won't change it.

You sound ashamed and like you want to hide it from everyone you can, your ds will pick up on that. So what if your younger child 'blabs' to the world.

Be proud of your child not ashamed.

Dd15 is very open about her diagnosis and it's working well for her.

I tell people who “need to know” - but I draw that quite widely. So the obvious ones are anybody who looks after him - family, school staff, people at his activities etc. The parents of most of his friends know because when he goes on play dates or to a birthday party it’s easier for everyone if they understand his needs. Plus he’s often got ear defenders on which seems to act as some kind of unofficial signal round here. I also told a few of my friends because I needed them to know so they could support me. I’m not embarrassed about DS, I don’t hide his autism and it’s not “private” but I do regard it as “personal”, so I wouldn’t just casually blurt it out to any random person.

I would say that even if you’re expecting the diagnosis and it’s welcome, it can also be a shock and a lot to process. You don’t have to do anything right now (although I would say you should tell school immediately) and remember it’s always possible to tell more people later but you can’t un-tell people. Take your time and get your head round it. Let him get his head around it and see what he thinks about telling people - and remember some autistic people can need longer to process things so I wouldn’t have one massive conversation with a resolution at the end, I’d expect to talk about it in small chunks and give him time to mull over whether he wants people at football to know or whatever.

Don't rush.

Mine received his diagnosis during Y7. His HoY knew ds was on the pathway, and various teachers had flagged ds with the Senco within the first 3weeks of term.

We decided not to inform anybody except ds's siblings and the school at first. Ds did not want anybody to talk about him, although we talked about it openly at home. It took him a few months to come to terms with his diagnosis. Once he was comfortable with it, and saw that the diagnosis was not an issue at school, he agreed that his Scout Leader should be informed, as well as the organisers of another group he attends.

Ds is now in Y11. He's had a very rough time socially, but now has a small circle of lovely friends who are all very accepting of each other's quirks.

Dh and I have still not informed our parents. They are very old fashioned in this respect. They think labelling a child in this way leads to prejudice against the child and limits their options. They would also see ASD as something 'wrong' with ds yet could never believe that there could ever be anything wrong with any of their dgs. (My parents are PFB with all my dc!).

Ds is now entirely accepting of me telling people who ought to know that he is autistic, such as HCPs and club leaders. Other than that, I leave it up to him. If he brings it up with the wider families then I will support him in explaining it to them.

TL:DR

It's not just you who needs time to process the news, your ds also needs that time, and he is the one whose wishes and needs must take priority in this.

@GazeboLantern and@Penguinfeather781 your answers are really helpful thank you in terms of articulating and laying out what I'm thinking. I think it is personal to DS and I think it will take months (if not longer) for him to fully process this.

Regarding people saying I'm ashamed of my son I'm not. I'm intensely proud of him and who he is - I just think that it is a personal thing. If you were diagnosed with any condition/disability I think you'd need to consider who you told - particularly when it's not your story to tell and the child may not fully comprehend what it means.

Would you be so anxious about people knowing if he was partially deaf or blind? I’m not saying shout it from the mountains but I am saying you should challenge your thinking. Once you firmly understand what you think you can help him. You’ll also feel much more comfortable in your own skin.

My teen hasn't told his friends about his autism diognosis but he has about his adhd diognosis. Only because he has an access card and they all get to use the disabled queue at theme parks and get a free ticket, so he felt like he had to say why they cab do that (trouble queuing, access cards are fab). He unfortunately finds it embarrassing which I find really sad. I've failed there somehow.

Can*

Yep everyone gets in a muddle. Also there is no hurry. Take your time things will evolve. Take the first step of talking to your child and go from there. Sit on your own thoughts for a bit.

We are very very open and always have been. Other parents with concerns about their kids have approached us to help them as a result of our frankness. When he was younger, DS used to tell everyone himself 😅😅. He's abit more guarded now as a teenager, but everyone knows now anyway 🙂

Basically only anonymously. Dc forbid me from disclosure. Most of her teachers don’t even know because her school accommodation documentation was redacted to just list the resulting anxiety since that is all they really need to know.

Hmm if think if he was younger we probably would have been more open from the start. However I do remember vividly talking to a parent of a autistic child at a party who was so open she was telling us all about his autism, what his difficulties were etc. This child had no agency in this all his personal information was being shared.

I have a step son with a medical condition and he is very private about it. Hates others talking about it etc - maybe this is clouding my view.

Oh and as for me, I don’t talk about my ASD because there is no way for me to explain the label without mentioning DD. It’s something that I suspected my entire life, but women my age and with my type of presentation weren’t diagnosed as children. I’d shout it from the rooftops if it was just me. It’s hugely freeing accepting that I’m not doing something wrong, I’m just wired differently. It has allowed me to become more confident and ironically helped me improve my communication skills.