To wonder why nobody thinks my DD is autistic?

[Nobodylistens]

DD is 11.
She has always been quiet, intelligent and rather intolerant of peers her age.
At some points it came across rude - she got to about 6 and couldn’t see why kids her age were still running around dressed as fairies so would rather play alone or with one other child similar in nature.
As time has gone on, she has become more and more socially awkward - she hates any situations where she will have to talk to people she doesn’t know and refuses completely to attend holiday clubs for me to work but also won’t be left alone at home for any length of time in fear for someone breaking in ( we’ve never had a break in )
Shes not affectionate and tenses up completely if anyone shows her any affection and is clearly visibly uncomfortable; tears when nan tries to hug or kiss her goodbye ( we’ve had to tell nan to stop in no uncertain terms )
Shes now gone vegetarian which is fine but can’t accept others in the house are still eating meat and is visibly upset at meal times where meat is being served and asks to eat in her room alone so she doesn’t have to see it
She can’t hear people eat - she leaves the room if someone makes a noise whilst eating
She can’t share a room on holiday with her sister or me or dad as she can “ hear “ us breathing and gets frustrated that we can’t sleep with our mouths closed and no noise
Lack of empathy - a toddler fell over in front of us today and older DD ran over to pick her up; DD said she should have looked where she was going
Massive attachment to her dog, almost obsessed to the point she thinks she’s a human; talks to her, cuddles her, speaks about her the entire time we are away from home for any length of time

Lots more examples but feeling especially drained tonight as she has finally gone to bed after being convinced that the flies we saw on the dog walk might now be in her bedroom - she doesn’t want to sleep with me; says that’s weird at her age ( even though 13 year old DD sometimes does ) but sometimes just won’t / can’t sleep so sits up all night as I won’t let her have technology after 8pm so just repeatedly comes in to tell me she’s bored and can’t sleep but doesn’t actually want anything I can offer.

Im sure there’s something going on but nobody agrees.

anyone been here?

Having a lack of empathy is often a huge part of the diagnostic process, 'theory of mind', for ASD. It's classic! Working on increasing empathy is done, through all the books that OP has now bought.

Oblomov22

I think you need to be very careful with suggesting kids with autism hide bluntness . That is encouraging masking. It’s exhausting on top of everything else. It impacts self esteem. Masking and struggling to cope is why my Dd and other girls end up with mental health problems such as eating disorders.

And I don’t see why we need to try and get people with autism to conform to social niceties. What is wrong with being honest? Why do ND people have to conform to the NT world?Flattering and ego massaging shouldn’t be obligatory, there are enough other things to worry about.

I wasn't suggesting masking. I see masking differently to you clearly, and recognise that some (often girls) who feel forced to do it, or end up doing it, masking can be very damaging.

What I was suggesting is not that. I would refer to what I recommend as masking, I see it as very separate things.

But acting like somebody you’re not and changing to fit in is part of masking. You are covering up who you are and what you feel. I don’t want my daughter second guessing everything she says to fit into a NT world.

Women are expected to do this more( learning tricks to fit in) which is why so many girls end up undiagnosed.

My viewpoint may not be shared with you. I made it very very clear that this was only one tactic. May not suit everyone. I'm pained at having to explain it yet again.

It may not suit your dc. If not, just ignore. I'm trying to help OP.

I personally (And you don't have to agree with me, this is just my own personal view - can I make that clear for the umpteenth time) find the world Quite rigid in its thinking and un-accommodating. Which is not very helpful for a lot of SN children.

And some of societal norms and the way that we behave you may question as not being right. But they are what they are, at the moment.

We have a child here, who is struggling. Struggling to understand. Struggling to fit in.

In the meantime until societal norms do change, I personally and I only mean me, Have encouraged my child to try and fit in more. only to make their life easier and only for them to understand that a lot of NT people behave this way.

Whether it's right or wrong how society behaves is neither here nor there. You may think it's wrong to expect our dc to change. I took the view that in order to help my ds1, I would try this tactic.

It may not suit you. Fine. I didn't present it as the only option.

If a dc is struggling to understand it or to participate in it, and wants to participate in friendship (Some don't want friends!, but if you do....) it might be helpful to read a book such as the one's suggested which explains the societal norms so that you have more understanding and you understand how other people expect you to behave.

Whether the behaviour of others and the expectations of how they expect you to behave is right or wrong is neither here nor there at the moment. I'm trying to help struggling dc to understand societal behaviours and help fit in.

If that's not what you want for your child then fine.

Does that make it clear.

I'm sorry if I have used any wrong words throughout this thread I'm trying to be helpful and I don't need my post picked apart.

I've deliberately used very vague words like : some, sometimes, may help. In order to deflect from these criticisms. once again may I just say if you don't agree with the above that's absolutely fine.

I was only trying to be helpful to op and even if she or anybody else doesn't want to take anything from my post that's absolutely fine too.

But you are saying ND children should cover up who they are by recommending somebody else’s child do that. The daily pressure constantly checking what you say and reframing to fit in will be exhausting on top of everything else. I don’t think boys have to do that so much and it leads to girls going undiagnosed and falling apart in teenage years.

You think the NT world is going to change. Much? Quickly. To accommodate SN children? Hasn't fucking so far. Takes ages to change anything.

Stamp racism out, bend the knee in football. Of course racism is bad. You'd be odd to suggest otherwise. Slow progress though.

But things change slowly. Unfortunately. The world is uncompromising. And unaccommodating. Sadly.

No.

That's not what I'm saying.

And yes masking is very bad in girls. Boys do it too though.

You would not expect somebody with a more visible physical disability to cover it up to fit in.

Stats illustrate masking in girls is a far bigger problem in girls. Boys aren’t expected to do bullshit ego massaging for a start. My daughter has been there, done that, got the mental collapse to show for it.

Finding more open honest friends who don’t confirm to social niceties would be my recommendation. The op’s child can be who she is and value herself. Far more likely to have better self esteem further down the line.

What % of the UK, or the World, or children in education in the UK have SN?

16.5% ?

You think the world is gonna change. For them? Me thinks not. Or barely, slowly.

I don't disagree. Finding better friends who are accepting of you, is always best, SN or not.

But I still think an understanding of NT social nuances helps. Re how others behave. You think reading such a book as : how an ASD child can understand friendship subtleties, does damage?

As a consequence of all the above, lying, even "white lying", is a huge challenge for many autistics. It's almost impossible for me to tell a direct lie.

I think that’s a you thing. Autistic people can lie when it benefits them and they want to. Like everyone. It’s not an autistic trait, being unable to lie. I think it’s a misconception that not wanting to lie to conform is the same as being unable to lie or be deceitful at all.

Completely agree @Tw33dleD33 . My DS masks “like a girl usually would”. He finds it utterly exhausting.

@Oblomov22 your advice and opinion are part of the problem. Imagine being told to completely hide your personality to “fit in”?! Daily Struggles are difficult enough for my DS and millions of others without being encouraged to hide who they are.

^That's where learning the subtleties of social skills comes into play.
Instead of saying to a friend re-the dress : "no that dress is awful. you look hideous, it doesn't suit. you look fat and un-attractive and the shape doesn't suit you at all"^

That's not how I'd word my feedback, even in the fitting room. In the shop, I'd be very specific about the flaws to assist with selecting a nicer one and be very careful to use wording that clearly blames the dress. "That dress does not suit you, the cut of it makes you look boxy by hiding your waist and the pattern reminds of my cat furballs" is not the same as "you look fat". On the subject of the word "fat", a vital, as in potentially life-saving, social rule I picked up when a classmate developed severe anorexia was to never mention a person's weight or size ever, even positively or as a compliment, because they may have a history of eating disorders and even "hey, you've lost weight, it really suits you" can trigger a relapse that could be fatal this time. The praise people get for losing weight is a contributing factor for some people's eating disorders so it can be dangerous to praise or compliment someon's weight loss.

Now, how many NT people would consider that a compliment or carelessly-worded clothing feedback could kill?

You say. No. It's not as flattering as the other blue one, you look fab in that"

That's what I say in the house when we are getting ready to go out. If she then says, "oh, I bought it recently, do you think I should return it?" then I would give fitting room levels of detail to assist with selecting a better dress. I learnt about what clothes flatter body shapes from Trinny and Susannah books and hobbyist dressmaking, so I come to clothing choices from a position of having learned the rules about this and not just giving an intuitive opinion.

Have encouraged my child to try and fit in more. only to make their life easier and only for them to understand that a lot of NT people behave this way.

@Oblomov22 i see you have good intentions so I want to try and understand you. I think perhaps it’s a question of using different terms from each other.

I think perhaps your point might be that you think explaining to the child with autism about neurotypical people, who are indeed the majority, how they think, social cues, emotional understanding etc will help them understand the different way of thinking and viewing the world that neurotypical people have? So that just as we are helping them understand themselves, we are also as parents in general, helping them understand others and in doing that we are opening them up to understanding other peoples perspectives. I don’t see anything wrong with that. It’s not masking to learn about other people and to understand why they may react the way they do. We do this kind of thing every day, as humans, try and connect to each other, understand and communicate in effective healthy ways. We can do that without training our autistic kids to mask or behaviourally modify though. While there are autistic traits that cannot and should not be intentionally changed, we also have personalities and principles that can be learnt and considered. I don’t think we should say, be less blunt, you have to be kinder. Being blunt can be a huge positive in many circumstances anyway. But we can say, you may want to watch other peoples reactions and learn common expressions of sadness or upset so you can identify when you may have been misunderstood. We could suggest they chat to their friends sometime about how they don’t mince their words and can be blunt but don’t intend any harm. It can help them build better friendships. My DD didn’t understand how upset people got about death and breakups for a long time, but she now feels genuinely pleased that she is someone her friends come to when upset for both comfort, and sound truthful advice. I hope what I’m saying makes sense. I battled with teachers trying to insist my DD could change and communicate like everyone else, no she can’t! Life would be very difficult for them if we sent them out in it thinking that because they are autistic, they don’t have to consider anyone else at all though. They’re very capable of empathy and caring and they can be the best friends you could ever wish for. My DH really is mine and he understands me on a level no neurotypical person ever has. The bluntness never put me off! I love it!

Do you think that telling autistic people to hide who they are will speed up our social acceptance? Or will it slow it down compared to being open and visible? Social acceptance of other disabilities came in large part because people refused to stay hidden any more.

It's also putting a fuckton of stress on the person who is already struggling to tell them that they have to mask ever more convincingly in order to live. The best decision I made in my work and personal lives was to "come out" as autistic and explain how that makes me think differently and experience the world differently from other people. Suddenly, I could say "I need to go somewhere quiet for a bit" and the people around me knew why and it wasn't rudeness or asocialness. People understood that my bluntness was part of me. That doesn't mean a carte blanche for me to be rude, what it does mean is someone saying to me "what you just said comes across dismissive/overly terse/rude/etc, is that what you intended?" instead of sulking or shouting at me. It means that people's starting point for holding me to account for missteps is a presumption of good faith and poor judgement on my part. My near-inability to lie helps with this, because if I was being deliberately snippy (let he who has never done this write the first condemnatory comment) I admit to it, so people know I'm not lying when I say "no, I wasn't".

I think that’s a you thing. Autistic people can lie when it benefits them and they want to. Like everyone. It’s not an autistic trait, being unable to lie.

You may be correct that my specific manifestation of truthfulness is idiocsyncratic. I did however say "many", not "most", and that it's a big challenge, not that we are unable to. Also, we tend to suck at it so learn not to bother because we will only get caught any way, which is in itself a big challenge to lying. Telling your friend untruthfully that you think her dress is lovely, when she can easily detect your insincerity, is surely going to cause more harm than just being honest? Not only do you dislike her dress, she knows that you lied to her? How can she trust you with the big things, like for example being able to trust you to go with her for an abortion and take that secret to the grave, if she can't trust you with something so small. This study shows that autistic children are over five times more likely to be truthful about misbehaviour than their NT counterparts, so I think I'm fair in asserting that we are less likely to lie, even of not for the reasons I outlined.

Now that I'm reading the above again to check for typos etc, I've read again the bit about learning not to lie because we suck at it and get caught straight away and realise that my "tongue freezing in my mouth" experiences are typical of a severe fear response. Recalling events when I have had to be very careful of what I say in order to protect someone, I was very scared indeed. So thank you for challenging what I said, you've made me think again about why I react that way in situations where others would lie.

Not only do you dislike her dress, she knows that you lied to her

I meant "not only does she know that you dislike her dress, she knows that you lied to her about it as well".

I agree with you all 😁

I agree with@Oblomov22 because for me much of the stress of social situations comes from the 'not knowing'. Not knowing what I'm meant to do, what I'm meant to wear, how long a conversation should continue before people want to move on, etc. So the knowledge of how people behave is so powerful. I empower my children with that knowledge as much as possible. However, I agree with others, that this knowledge should be used at will, not under compulsion.

You are absolutely correct that knowledge is power. I don't think that anyone has advocated depriving autistic children of knowledge about how wider society works. But knowledge goes both ways: being able to partially or fully drop the mask around trusted people who you have given that knowledge of yourself to by coming out reduces the daily cognitive burden, giving you greater capacity to mask in situations where coming out inappropriate, such as when the checkout assistant in Lidl says "hi, how are you?" before scanning your first item without even waiting for your reply. (Why do they do this? It's the ultimate in insincere questioning. If I ever work checkouts again, I will say "good morning/afternoon/evening, are you ready for me to start scanning?" because one of the situations I get really flustered and anxious in is when I've only just unloaded my goods onto the conveyor and the assistant starts scanning at a speed that would make Ayrton Senna jealous whilst my folding bags and wallet are still in my handbag.)

“I think that’s a you thing. Autistic people can lie when it benefits them and they want to. Like everyone. It’s not an autistic trait, being unable to lie.“

The above is a ridiculous thing to say. People with autism vary hugely, it’s not a one size fits all. There are about 60 different traits to have in combinations, then you get differing severities and other neurodiversities too.

You wouldn’t say all with a visible disability can climb stairs when they want to.

@Tw33dleD33 no I don’t think my comment is ridiculous at all, I was responding to one that was making quite a big generalisation that autistic people can’t lie. In my experience it’s not true. Doesn’t mean some might not struggle to. I just don’t think it’s one of the more common traits.

My ds couldn’t lie when he was younger but can now as a young adult.

Saying that "lying, even "white lying", is a huge challenge for many autistics" is not the same as saying that "autistic people can’t lie." For starters, "a huge challenge" does not mean "can't at all", it means "very difficult". "Many" acknowledges that not all are affected this way.

I also refer you back to the study I linked that indicated that autistic children are five times more likely than NT children to tell the truth in a situation where they disobey an instruction, have no reason to believe that their disobedience would be detected, and are questioned about their obedience.The same paper notes that autistic people are less convincing liars than their NT counterparts. Sucking at lying so you get caught in a lie isn't the same as my "frozen tongue" experience, I'll grant that. It is however going to make lying more difficult. The autistic child who learns that the grown-ups can detect lies easily is more likely to give up trying to lie than the NT child who can deceive the grown-ups.