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.

@Ponderingwindow how great to hear how positive your diagnosis has been for you. I truly hope it helps my son in a similar way ☺️

We are lucky in a way we got all diagnosis quite young so all our friends and family were involved and supporting, as we did struggle. Now dc are older we talk freely about it at home and what it means but again all my kids have a diagnosis of asd or adhd or both so it's a level playing field.
We do have lots of discussions when younger about how everyone's brain works differently and how words like asd and adhd are just used to describe a set of ways that that person brain works.
Schools know obviously but I leave it up to my dc to tell their friends. The older ones felt comfortable around p7 telling their close friends. Funny my 14 year old just did a comparison with his class when they all got their medical forms to bring home last week and discovered other adhders in his class. I'm actually a bit proud that he doesnt feel any shame or stigma

Its sometime incredibly tough being parent going through diagnosis and m probably guilty of over sharing like the parent at a party. Looking back I desperately wanted people other parents to give dc a break, see he was smashing kid not odd. It helped me to talk about it to other parents. Perhaps I should have maintained my childs privacy but it was all a bit of mess around preschool/reception years when we were struggling with school refusal, outbursts, running away from people etc. It helped me to talk through with other parents and even get a bit of support

Other than telling the school, I would let DS decide. It's not about being proud or ashamed. It doesn't matter that he's a child, he is allowed his privacy.

@Hankunamatata I also majorly share about my son. He's 5.5 and we struggle at the moment with meeting his needs. I also think it's my autistic obsession. I know i need to stop

That's totally different. I've had to tell people that I'm hearing and sight impaired because of the help I need and I don't really have a choice whether to tell people.

I tend not to tell anyone about my Autism because of the ignorance of others. I have told a few friends and I know a few worked it out.

I am recently diagnosed (in my late 40s). I have told my sister and my manager at work. Not my parents as they are old and it would confuse them. My husband obviously knows. I am taking the approach of telling people on a need to know basis.

@TigerRag That's totally different. I've had to tell people that I'm hearing and sight impaired because of the help I need and I don't really have a choice whether to tell people. exactly. So that is how you choose who you tell. OP could use the same approach to disclosing her ds’s diagnosis. Does this person/organisation need to know so they can provide the help he needs either to get the most out of the interaction or to keep him safe.

I think you're right OP that it's his personal medical information and he has a right to have agency in who gets told. I would tell him it's up to him who he tells, apart from school and doctors who are there to help him do the best he can. I would also introduce the concept of "reasonable adjustments" in an age-appropriate way (e.g. is he allowed to wear ear defenders at school now?). That's because it's often more important for people to be able to make adjustments than it is for strangers (or even friends!) to know your medical information.
As an adult, personally, I usually choose to mention it as it comes up naturally when I get to know people. I know what reasonable adjustments I need and I can ask for them. I also know when to avoid mentioning it in places where prejudice is likely to negatively affect me - but I am lucky in that my presentation doesn't always let on that I'm autistic to the uninformed eye, so I can do that. Although I do always get judged as weird, or odd, even by people who don't know my diagnosis, so that's not always productive and I may have to rethink.

As PP said, children (and adults) don't bully autistic people because they've got an autism diagnosis, they bully us because we're autistic - or to their mind, weird, wrong, slightly off socially - so sometimes a known diagnosis can actually help. Because we get bullied by people who "would never bully someone for being disabled" but then do, because they don't actually understand disability. It's complex and it will take time.
Sorry bit of an essay there.

I think he's probably at an age where he can decide?

A few weeks after DS started secondary, the tutor asked privately if he wanted to give a presentation / discussion about his ASD to the class. My son was reluctant, thought he would be teased The tutor could see his classmates puzzled at the way DS acted sometimes, they didn't understand why he did certain things. In other words, he was already a potential victim of teasing and the tutor wanted it nipped in the bud. My son agreed and I think for many of his classmates, it was like a penny dropping, basically a start to understanding what autism can be like (for one person).

Sorry, I'm not saying shout it from the treetops, but in certain situations, it can help to let others know.

This is interesting and I'm glad it was helpful for your ds. Similarly when I started a new job in a school, I gave a lesson on disability, mine and in general. Some of mine are quite visible, so it was useful to give the kids a chance to ask respectful questions, and learn about disability justice in general.

DS is 9 and waiting for assessment, we talked to him about it because of difficulties he was having and he told friends in school straight away.

I've had random strangers ask me if he's ASD, so it appears that to those that know the signs it's pretty obvious. I don't shout it out to all and sundry, but I'm not ashamed of it and will tell people if I feel it's necessary because of DS behaviour.

DD11 got her diagnosis earlier this year and has just started secondary.

I told family and my close friends who knew we had been going through the process, and the school were informed obviously.

Further to that it's completely up to her whether she chooses to share it with people or not. I know she told a couple of her best primary school friends but I doubt she will have told anybody new at secondary yet. She doesn't see at as particularly interesting or a big deal, so not to be kept hidden, but probably wouldn't share it with new people unless autism came up in conversation.