Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Flip

1 2

Original poster

To be completely open with everyone about DS having autism?

39 replies

Imaginosity · 19/04/2017 23:09

I've also posted this on the SN boards but want to post here too to hear other point of views.

I've been reluctant to tell too many people about DS having ASD - as I always have this fear that when he's a teenager he'll be annoyed at me if he's bullied about it. I'm sure when he's a teenager everyone will see he is different anyway and might guess he has autism.

I've told people I'm close too and that know DS. It takes the pressure off when DS is around them as they cut him some slack in relation to his behaviour.

I would love just to be able to be open about it with everyone as he does act differently to the other boys in his class and I hate wondering are they thinking he's odd rude or badly behaved at times
He wanders off, sometimes doesn't notice people are talking to him, sometimes he's too boistourous, sometimes he spontaneously does something that's not very nice without thinking - like pushing over something someone is making.

I'm also concerned as some people have preconceived ideas about people with autism and I don't like people assuming he's a certain way.

In an ideal world I would love it to just be a part of DS that doesn't need to be kept secret as if it's shameful or something.

Am I over worrying about this? My main concern is DS not wanting everyone knowing the specific diagnosis as he gets older.

OP posts:

TheSconeOfStone · 20/04/2017 16:38

We have been fairly open about DD's ASD diagnosis. She is very self aware and knew she was different. The diagnosis aged 8 was a huge relief to her. She's 9 now and not ashamed or embarrassed by it. She is ashamed of her behaviour at times but I think people make more allowances for her because of the diagnosis. For DD it is obvious there is something different about her as she has coping strategies at school which probably look like privileges to other children (sensory breaks, taking herself out of the classroom as required).

I agree with what Sirzy said about people judging behaviours more than diagnosis.

1nsanityscatching · 20/04/2017 16:45

I only disclose on a strictly need to know basis because I believe that my children (22 and 14) are entitled to their privacy. Fundamentally if they don't choose to share their diagnoses then I definitely won't either.
The people directly involved with their health or education know but it isn't common knowledge. Ds went to an autism specialist school so has friends with autism who know obviously but he has other friends who don't. Dd hasn't chosen to share her diagnosis with her friends so neither they nor their parents know.
I am more than happy to advocate for my children and happy to share my knowledge and experience of autism in general but I don't believe that I need to share their diagnoses with all and sundry to do this if I'm honest.

ASDismynormality · 20/04/2017 16:45

My son has ASD and I have told people when it's come up in conversation. My DS also told the whole school he's autistic during an assembly.

TheRealPooTroll · 20/04/2017 16:45

There seems to be the assumption that most people will make allowances/be understanding if they are aware a child has ASD. This is the exception rather than the norm ime. Have you been on any of the threads on here where a parent has had the audacity to inflict their child with asd on a mainstream class? I don't see a lot of understanding on those threads.
Knowing a child has ASD doesn't stop a lot of people judging them as naughty, poorly parented, using the diagnosis as an excuse etc.

OneOfTheGrundys · 20/04/2017 16:50

DS2 has ASD.
He tells everyone he meets. He's very open and seems very 'at one' with it. We've never spoken to him about it in a loaded way-just as a fact about him like his appearance (as a pp mentioned). Taking his lead, I'm very open about it too.

ProudAS · 20/04/2017 16:52

I got bullied because nobody (me included) knew about my autism.

OneOfTheGrundys · 20/04/2017 16:52

And yes, the judgment of others is our biggest burden tbh. If he wants to get to school and sit down and read his book, so fucking what. It's really not a 'shame' he doesn't want to play football.

Spikeyball · 20/04/2017 16:52

On the few occasions that some random has made a nasty comment about ds's behaviour, I've said that he has a disability but not specified what it is. I think this is more likely to shut them up as continuing the conversation would make themselves look bad.

UppityHumpty · 20/04/2017 16:53

It really depends on how severe it is tbh. If he can 'hide' it when he's older then YABU - you need to talk to him about it first. If not then people will probably already have an idea.

0live · 20/04/2017 17:02

Our 11 year old has several diagnoses and we only share them on a need to know basis. Because that's what he wants and it's his information and not ours.

AFAIK he sometimes tells other children the most " acceptable " of his labels.

If he wants to tell everyone for some sort of altruistic reason then that's his choice, but I'm not doing it on his behalf.

Superjunior · 20/04/2017 17:05

As an adult I rarely ever tell people, people can be arseholes about it and I'm not a learning device to challenge perceptions or help them get over their prejudice. People probably guess there's "something" up, I flap and struggle with eye contact etc but I won't confirm unless it's essential really.

But No right answer reall, this thread shows different from person to person! Maybe just go with what you feel is best for him and as he get older he can start making more of the decision as he meets new people at secondary school etc

TheNoodlesIncident · 20/04/2017 18:38

It is difficult because once you have mentioned it, it is out there and out of your control. You don't know if the parent you mentioned it to has already told others, and you don't know what additional comments they have made.

When you tell others, what you are hoping for is some understanding and tolerance. It's a shame it doesn't always work out that way. But if NOBODY tells, it remains hidden away rather than becoming more "mainstream" in the school community. Not so long ago, the only threads relating to autism in mainstream schools in AIBU were "I want this child out of dc's class" type threads. Now there are far more, more often from the point of view of the parent of the child with autism, or a person who knows they have autism (without its being dx'd) and who can present the difficulties and struggles faced on a daily basis to the posters who genuinely have no idea what it's like to live with. Not all of those are sympathetic but slowly there seems to be more acceptance and a little understanding. If we don't bring it out there, how will it become more familiar?

But. I have found that the people whom I have told that ds has autism, and that I probably am the same, treat us in the same way they did before. So those who excluded, continue to exclude. Those who were friendly are still friendly. One parent has disclosed that they had concerns about one of their dc and seems relieved to be able to talk about it to someone who understands.

I would probably not tell at the secondary school stage. If the ASD is noticeable then there is no need, if otherwise it might be masked successfully by dc and then it is up to them to say if they want to.

OP I was open with ds's dx in infants. I told anyone for whom it might make a difference, like the lollipop lady. (She turned out to have a dc with ASD too, unexpectedly) By the end of infants there were still lots of people who weren't aware (and didn't notice anything). It may well depend on how severely your ds is affected and whether it is noticeable...

Teabagtits · 20/04/2017 21:54

I'm not a learning device to challenge perceptions or help them get over their prejudice

Love this ^^
I must remember this response

RhodaBorrocks · 20/04/2017 23:55

DS used to have terrible trouble at school. Even after the teachers knew he was still seen as 'naughty' by his peers.

He decided to go fully public a year ago for Autism Awareness Week and stood up and did a little presentation and Q&A for his class. He was only 8 at the time.

He's 10 now and the last year has been completely different. He has friends who support him, different ones help with different things. One is very good at calming him if he gets stressed, another sticks up for him when he gets tongue tied in confrontation and gets him to articulate for himself. Others just accept he doesn't like football and won't join in with that and find ways he can join in (keeping score) or join in with what he's decided to do (usually working in the school garden as he's a keen gardener). The changes in him have been amazing too - he's more social, more talkative and has shown he's got a very sophisticated sense of humour (although facts are still hilarious too).

We'd always been open about it at home, but I'm so glad he chose to be open with everyone. He's honest about his struggles but then it also means they see how resilient he is too.

Flip

1 2