To be really upset at being told I'm being harmful and treating my autistic child like she is disgusting because..

[Frustratedmum2021]

At 6.5 I haven't told her yet she is Autistic.

Just been absolutely attacked by multiple people because apparantly I am.

Apparantly I am refusing to support her, I'm depriving her of an important part of her identity, it must be because I see her as disgusting and that keeping her identity a secret is abusive.

I'm so upset.

She is 6.5, she hasn't yet got the awareness of understanding. Since her diagnosis absolutely everything has gone into understanding and supporting her needs. It isnt a secret at all, she just has not got the awareness yet.

AIBU to have not told her yet? And does it really make me awful if I haven't?

I feel like the "actually autistic" community that attacked me on this haven't really understood that not all autistic people have the same abilities :(

@LomasLongstriderJnr

I don't think you're disgusting for not telling her, but I also think the younger you tell her, the more it becomes something she's known about as far back as she can remember. The longer you wait, and the older she gets, the more of a shock it will be, and harder to process.

You (like the twats that were rude to the OP) are assuming she is capable of understanding, which is part of the problem, because some autistic people do not have that capacity, even as adults.

I told my son at 6 and it was the right thing to do - for him. It helped him to understand that when he got upset at school it wasn’t because he was “bad” but that he was overwhelmed and needed to learn to manage his emotions.

When we told him, we didn’t make it a big announcement- just casually mentioned that maybe he reacted a particular way because he has autism - then he asked a couple of questions and was happy enough with that.

You need to tell her before someone else does

I told my son when he was about 8.5 and that was because he asked me why he "felt different". Even then it was difficult to explain and even now I'm not sure he really understands. It took me a long time to understand! You are her mum and you know her best. Take no notice of this, you'll know when the time is right

My dh wasn't told by his mum, he found out from her internet search history at nearly 14.

Obviously this was terrible. It's really impacted his life in a negative way - he has high functioning Asperger's, and he wishes he knew why he found so many things difficult.

But there's a huge difference between 14 and 6!!

As an aside, I has some extra testing for dyslexia/other needs around seven, and got some extra lessons and it was always framed as 'going to Mrs Smith's house to work on your writing', rather than a big thing about additional needs. I think I read my statement from this time in my early teens, but I was aware of the issues by the time I started 'big' school at 11, which feels about the 'right' age.

Ignore them. She's a person not a label. Lots of people don't even discover their DC have autism until later than that.

They sound like a toxic "community" I've found a few like this in my time critical of everyone who doesn't "conform" to there ideal and their hun rulz I can never find the right tone with them so im on my own with my kids who just happen to have sen (and no it doesnt define them) they were forever telling me I needed to "accept" my child i do accept my child! im just training him to pee "inside" the toilet and wear clothing "outside" the house this is WRONG allegedly

Meh

@a8mint it wouldn't matter who tells her, she still wouldn't understand, it would literally just be random words to her.

I think this is what the group weren't understanding.

She is very likely to never be independent as an adult. It just feels a world away from those who were admonishing me. Unless something drastic happens she may not be able to engage in things like the Internet like they can.

Please ignore the critics OP you sound like an amazing advocate for your daughter. The thing is autism being a spectrum presents differently in each individual. So even one person on the spectrum's experience of it can be so different to the next. I've seen and worked with dozens of children and young people with ASD over the years some were very aware of their diagnosis and had a great understanding of it.

Sadly there were others who were so profoundly affected by it they were unable to even do the simplest things without support let alone understand their diagnosis. No one knows OPs daughter better than her she may never be able to cognitively come close to understanding her diagnosis even at the simplest level.

So it's unfair and unhelpful to say that withholding it from her daughter could potentially be damaging. I worked with several dozen children and young adults who had no idea they had autism. Why because they were sadly never going to reach a point where by even explaining it in the simplest terms was helpful or beneficial to them. They were always going to need support to help them with even the simplest of things that most people take every day for granted.

OP your idea of drip feeding it as and when appropriate sounds like an excellent approach. At 6.5 you sound like your addressing and helping your daughter's needs as they arise. Which is a far better thing to be doing than explaining her differences to her when she has no way of understanding them.

Good luck OP in whatever you do. It’s bloody hard, sometimes it goes well and sometimes we mess it up.

I found using books really helped, but my DD is ‘high functioning’ (sorry I hate that phrase, and no it’s outdated but I want to convey my understanding that your DD may have a different capacity) so using books was something she could access with me and by herself.

Also with regards to the internet, I initially found this a great support. But have slowly stepped away. I often wonder about the loud voices in the online community, so take what’s being said with a open mind.

I have ASD. Its horrible that there are people who have never met you or daughter pass judgment on parenting. You know her best.

I am ASD high functioning adult, my experience is mine alone. I had never come across that group (actually autistic) but it seems strident - distance yourself. There will be other parents on MN that can help/support/share ideas

Yanbu - you know you’re own child. My son is severely autistic. He’s in his 20’s. Ive never told him he’s autistic, he wouldn’t understand that! He understands very little past “ what do you want” questions . You tell her when you think she’ll understand what that means.

The "actually autistic" community online really struggle to see past their own diagnosis, in my experience. They don't seem to get that not everyone has the same level of understanding and that everyone has different struggles. Maybe that's to do with rigidity, I don't know. Some people can be absolutely lovely of course, but do distance yourself from the ones that make you feel the way you do right now.

Explaining a diagnosis is a balancing act. Too early and it'll be completely lost on them, too late and they might wish you'd told them sooner. I don't think there's a right or wrong way to do it tbh. My DS has a diagnosis of Aspergers, he'll be 6 next week. He has a 1-1 support for learning worker at school so we have tried to talk about his diagnosis to help him understand why he needs this additional support. But honestly, he just doesn't get it. He knows the words aspergers and autism, but he has no idea what they mean or how it affects him.

At the end of the day, you know your daughter best and you'll tell her when you think she's ready. You are absolutely not awful for not telling her

@Nyfluff

I'd guess this is about them and not. Many autistic ppl grew up feeling isolated and even suicidal because they couldn't understand what was wrong and why they were different. These hurt people may just be reacting from their own pain and not being able to see the nuance or the affect it'd have on you. Don't take the comments personally, you know your DD. Be aware that she may already feel different and confused, and just not be able to verbalize it. Look out for low self esteem.

Yes this. I'm autistic and wasn't diagnosed until I was an adult but always knew I was different. But you are meeting her needs so she is fine! At 6 I can't see any need to know. I don't think you are depriving her of anything, she sounds a lucky and loved little girl.

My dd is 9 and was diagnosed two weeks ago, I haven't told her yet. She has very low self esteem, thinks she's ugly, hates her hair etc if I then tell her they her brain is different I don't think she would cope. So hard. Can I ask those that have told their children how they explained it ?

Loving the #ActuallyAutistic bashing here 🙄
We aren't all the same btw!!
I actually believe if she won't understand i would wait a few years

You have made the decision that is right for you and your family and so nobody else has any right to judge.

Ds has been aware of his autism diagnosis, and all of his others, all along because he can understand to a point so that was the decision I made for our situation.

@lollipoprainbow

My dd is 9 and was diagnosed two weeks ago, I haven't told her yet. She has very low self esteem, thinks she's ugly, hates her hair etc if I then tell her they her brain is different I don't think she would cope. So hard. Can I ask those that have told their children how they explained it ?

I have found with DS that actually understanding why he sees the world differently has helped him understand who he is much better.

I teach many children with autism in primary, many have mild learning difficulties too, some don't but their autism is a big barrier to learning, usually due to huge emotions, self esteem, and a range of other things.

Very few know they have autism nor what it is. Only the children who have a wider understanding of social interaction and more self awareness (and so often more distress about how they find life so challenging) tend to have been told. Usually y5 and 6 classes. And sometimes not all the children in a class seem to know. It can help some children hugely to know.

There are children I taught years ago who are now early 20s and still don't know despite achieving GCSEs etc. One in particular I know wouldn't be accessing the Internet and twitter as he doesn't have the social communication and self awareness ability to do so despite being able to build a computer from scratch.

His mum has often commented that in a way life is easier for him than some of the other children she has seen growing up who've had that self awareness, simply as they so desperately want to have friends and fit in.

Those are the children for whom it's valuable to have positive and supportive discussions about autism at the right time, their own experiences of autism and all the strategies they can use to help them with anything the need help with, and that that's absolutely ok.

You sound like you are absolutely do the right thing OP. You know her best ❤

I don't think you've done anything wrong at all OP, but for what it's worth it might be am idea to start talking to her about it now whilst she doesn't have the understanding - that way it will be normalised and pieced together but by bit rather than being a bombshell when she is old enough to understand fully. But she's your daughter and you know her best!

Also "having autism" is a very abstract concept.

It sounds like your daughter is working at a concrete level of communication, functional language etc at the moment.

My 6 year old DS with ASD wouldn’t have a clue what I’m on about if I told him. Just like he doesn’t have a clue about most abstract conversation.

I stopped reading advocacy sites a long time ago. When he was first getting diagnosed I was big on the idea following autistic voices and advice because, well, who better to advocate for autistic people than other autistic people? Turns out the answer to that is often ‘parents of autistic people’.

My son is in the category of people who can’t advocate for himself and his experience of autism is very different from those people who can. I don’t let it worry me.

I have an almost 7 year old with ASD. He doesn’t know. He was diagnosed about 18 months ago and at the time I didn’t think it helped him in any way to know. BUT he doesn’t have any classroom support, so nothing to tell him that he’s especially different to other children. He is now aware of SEN because other people in his class have fairly significant needs, and there will come a time when he does need to know, but we haven’t hit it yet.

We will probably deal with it in the way we dealt with his colour blindness: factually and with minimal fuss.

It is easier though because most of his needs manifest themselves at home. In school he probably passes for NT, for now at least