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?

She may want to be able to relax at home and not have to mask and handle the sensory overload.

She didn’t want to relax at home, she has wanted to do a different activity every single day in the half term and I’ve had to limit them as each activity she wants costs at least £50!
This was the one she was most looking forward to which is why I can’t imagine why she would ruin it for herself if she could avoid it!

@Nobodylistens - I sympathise with your experience at the pool.

You are right to ignore the “spoilt brat” comment.

It is really tough when they want to do something but then can’t cope, tough for you too.

A 3 hour drive, a pool that would have been busy as it is half term… the excitement of going… can all add up to sensory overload. Which your DD wouldn’t have predicted. So maybe it became about “the wrong swimming suit” but it wasn’t really that at all, but she didn’t even know herself what was wrong and probably felt angry and disappointed for herself.

For example, my DD (who is diagnosed)used to really pick at her brother when she was overwhelmed. Then completely lose it and be convinced it was because of his behaviour (as he usually was responding well to her shouting at/about him!). I could often see the triggers even though she couldn’t, nothing to do with him. But she finds it hard to recognise her own feelings, so it gets pinned on something else.

I now have enough knowledge to predict (some of the time!) what will cause overwhelm. I would have avoided the long journey and busy pool trip in your shoes or had a “get out plan” if I did brave it. But that is based on what I know now.

I remember once going to a theme park, pre-diagnosis. DD was SO excited. But when we got there, she couldn’t cope. She worried about her siblings on the rides, she didn’t want to go on any, she ended up with nausea and a headache and was shouting about the slightest thing. The day was ruined. It didn’t make sense at the time, but it does now.

No expectations helps (this is why a diagnosis will help you also, as it will be easier for you to stay patient).

For example, DD recently asked to come to the cinema with me and her brother and sister. She is easily scared and it isn’t the sort of thing I thought she would enjoy as was vaguely scary. But she begged not to be left out and said she would enjoy it, really wanted to see the film.

So, along she came. In a lot of situations, DD doesn’t “seem” autistic at all. But sometimes it is more obvious. This trip was one of those occasions.

She came in a animal onesie (she is 9), I let her do this, no big deal. She packed a bag with her own pillow, soft toy from home and her own drink cup. Fine.

When we got there, the DC had a choice of either popcorn or hot nuts. DD couldn’t decide. She started to panic at the desk and held the line up trying to decide then decided not to get either (with hindsight, we have discussed it before we got there).

I told her to decide in her own time and I’d go back out for them. Then we got inside and she was still worrying and a bit tearful. She eventually chose. I got them.

Film started. She had her hands over her ears. It was then scary too quickly which I could see. DD said she was fine but I suspected she wasn’t (she usually looks fine as she masks).

I told her “if you aren’t enjoying this, it’s okay to leave, I can call DH, no-one will be cross, it’s okay”. After I asked twice, she asked if I could call him. She kept apologising while we waited in foyer for him to pick her up. But, when I told her it was fine, I meant it. As I was half expecting it anyway.

When DH picked up, he didn’t ask her why she didn’t like it, we just kept it very “no big deal, you gave it a go” and off she went, and I went back in to the other DC.

She didn’t choose not to enjoy something, after asking to do it, the reality just wasn’t the way she had expected or hoped it would be. I felt for her when she went off home, clutching her bag of things, but she had done the right thing for her by being honest that she wasn’t okay.

But it’s taken a while to get to this stage, to understand that she isn’t deliberately being difficult. And the more we understand, the less stroppy she is and the less hard on herself she is.

I got a book for dd called the girls guide to autism or similar from Amazon . It was written by a young girl on the spectrum.. she says it's all a super power and puts a great spin on it all. It really helped dd to get her head round it all.

The difference is to the girl mentioned above is that she will maintain for ever more that it was in no way at all her fault; she wouldn’t dream of apologising for wanting or needing to leave somewhere.
she would have happily let older DD miss swimming today if older DD wouldn’t go in without her and she would have made no apologies for it.

The lack of empathy is quite a thing.

I think it hadn’t helped that we visited nan on route who can’t understand her at all, so cooked a massive roast dinner but bought vegan nuggets “ just in case “ DD was still vegetarian.
So she had been in tears once by the time we got there already.

The “lack of empathy” can be a coping strategy to the alternative of being completely overwhelmed by the situation as it’s easier to let no feelings in or show rather than be completely overwhelmed in public. I really feel for you as it’s SO hard to parent a child like this, we have had to massively cut down on going out to avoid that overload particularly during school hols.
please do look at the PDAsociety website it’s really helpful.

Also the expression “Trigger Stacking” ie they can cope with some things but during the day the constant build up of things that overload or a loss of control in their environment,will cause the coke bottle anxiety effect. The purpose of sensory breaks during the day helps to release some of this.

I am a bit late to this thread but this! Why GPS think schools know more than the parents (and forgive me you are a teacher so this might seem directed at you, but it's not) they just don't! In fact I have found schools are deliberately obstructive. I advise parents all the time on this and I have yet to understand why school do this, then don't want to apply for higher needs funding or EHcPs and you will know this to be honest teachers in the main no nothing about autism ... it is shocking when I advise a parent who is a teacher because often they enter special needs thinking that everything is laid on and doors will open and you just have to mention special needs and you get what you want and the reality is completely the opposite and basically you have to become "that parent"
So now the other issue. I am a nurse and nurses and doctors probably know even less than teachers about autism... and frankly the has the school got any concerns is a cop out because even boys will act differently at school to home...
So my advice when the GP asks does the school have concerns... this happened to me first two times they refused to refer, 3rd time I said yes... diagnosis with autism... next son I just said the school had told me to come... I found it incredible how having repeatedly told me there where no issues with my sons at school, the minute CAMHs sent the paperwork along suddenly the school called me in to discuss my boys "issues" which when I said well this is all new as they had told me they did not have any issues ... well apparently I was wrong and they had been concerned for many years... blah blah

Next issue was not helping with an EHCp.
constantly excluding and saying that they could not guarantee sons safety or needs but somehow they felt they wouldn't get the EHCp... we got an EHCp.

So my advice no one knows what the heck they are doing including the LA's so do what you have to... the waiting lists are really long, you won't get a diagnosis if they have any doubt about it.
Or if you can afford it, bypass the NHS and go private Lorna Wing centre specialises in girls and women.

The purpose of sensory breaks during the day helps to release some of this.

Yes, you’ve explained that all well.

Thank you - I think I’m overwhelmed and am going to have to find the money to go private so I can help her and help her understand what’s happening for her

That makes sense. So she was already a bit upset before you even got to the swimsuit part.

will a private clinic still want school involvement?
she’s so embarrassed at the concept of school being aware of the behaviours at home

Did you read my post? I explained this very carefully. FFS read the full thread.

OP: she would have happily let older DD miss swimming today if older DD wouldn’t go in without her and she would have made no apologies for it.

Why should she apologise for her older sister's choice not to swim? She isn't actually stopping her older sister from swimming, it's not like the whole family went home. Forcing the younger daughter into the pool would be a violation of her agency. She's allowed to change her mind, as long as she does not prevent her older sister from swimming.

Re the swimming costume issue:

• The inability to cope when things aren't Absolutely Perfect is one of my autism traits. As an untreated adult over 40 I still have meltdowns if something goes wrong and I can't immediately see a workaround or do not already have a Plan B prepared. What helped me was cognitive behavioural therapy and some workplace training called Shut Up and Move On (SUMO) where we learned to ask questions like "in six months time, will it matter which swimming costume I wore today?" to gain perspective. The CBT enables me to interrupt the spiralling panic before it engulfs me in order to be able to ask the SUMO questions. I repeat, even in my forties, I still sometimes have meltdowns. Perhaps if I had been diagnosed and helped as a child, I might cope better?
• Clothes pinching or hurting is also something I cannot cope with. I cannot wear bras, only soft crop tops, for this reason.
• The colour being wrong on the costumes that do fit would matter to someone autistic. Some colours "glare".

Please, try to persuade your daughter to attend an assessment. She sounds alarmingly like me.

The school will have to fill in questionnaires, but they will only be asked what happens at school. There's no need for them to see the questionnaires you and DD fill in and you don't have to share the resulting report with them (although it would make sense to share any advice on education). We were open with school about the problems we had at home, but to be honest they were causing such enormous problems for us as a family, it didn't occur to me to hold back and of course I didn't say these things in front of DD (apart from in one excruciating phone call with the GP in spring 2020).

School wrote a very perfunctory summary that was barely worth the paper it was written on but DD still got a diagnosis. As before, worth checking out Lorna Wing if they’re near you.

she’s so embarrassed at the concept of school being aware of the behaviours at home

This tells me that she is sinking a lot of effort into masking at school and leaving nothing left to mask at home. It also tells me that she knows that how she behaves at home is unreasonable and would control it if she had the capacity to do so.

We’ve just had another long talk

I don’t think she can control it at all - she got very upset and said she just can’t change the way she thinks.

She explained to her, that once the swimming costume didn’t fit, she couldn’t feel less stressed about it so then had the tantrum.

It doesn’t help that she had a high expectation of herself, so the loss of control is almost so embarrassing afterwards that she pretends it hasn’t happened and says things like “ I think you’re over reacting because you’re tired. “
Its a deflection technique because she doesn’t understand her own behaviour.

Im going to contact the Lorna clinic Monday.

By the way, of course she can change her mind re swimming BUT in a NT child, I do think it would be massively unreasonable to be the one to want to do this day out, almost have to convince older DD to come as she’s not a lover of swimming like the younger one, have me drive 3 hours and then change her mind, knowing full well I couldn’t leave her alone to jump in the pool with her sister.
So actually the change of mind impacts on everyone - not just her

Make sure any provider you pick also assesses for PDA as not all do and she sounds very PDA. They will all request information from school but don’t worry as this isn’t the actual assessment, it is ADHD that has to have two settings supporting.

Have you heard of the book the explosive child by Ross Greene? It’s fantastic at helping you to refocus on why the behaviours are happening - which is because the child is lacking the skills not because they want to upset anyone. There’s also a Facebook group called the B team which could give you some advice on implementing the thinking. The skills she is having trouble with are called “lagging skills”.

A nt child could behave like this but that’s really not the point. Most (all?) autistic behaviours are human behaviour it’s the context, duration and stage that is different. Very few children know how to pace themselves and I would say it’s a skill that is markedly lacking in many HFA verbal females. (That’s entirely anecdotal but true among my acquaintances).

All the techniques to support autistic people are equally useful for nt so rather than rush full pelt for diagnosis (though do if it will make dd happier) I’d rush for more support. You do need to have consequences for behaving inappropriately. It’s actually probably rather more for nd children because some lessons are harder to learn.

Your history and experiences sound so similar and the many opinions of unqualified people convinced me not to pursue a diagnosis after numerous attempts. When puberty hits, if it hasn't already, is when things will be more obvious and school changes will affect her more.
I regret not trusting my instincts. If you can, seek a private diagnosis for a definitive answer and consequently get advice and help if she requires it.
Sometime after her ADHD diagnosis and other treatments, my daughter's Pyschiatrist asked me if I had ever considered that she was autistic. I could have wept.

she couldn’t feel less stressed about it

That out-of-control feeling is very familiar to me.

By the way, of course she can change her mind re swimming BUT in a NT child...

You see how I didn't see immediately how your younger DD's behaviour would be unreasonable in the wider context of the whole day? How I could only see "younger daughter didn't actually stop older daughter from swimming = OK" and not see how altering the set of people who entered the pool would cause [a negative emotion, based on your description, but don't ask me which one] in the older daughter and you?

I do this all the time. Do you see this in your DD?

I’m a late diagnosed Aspergers lady. All the signs were there, all my life. I had a good job, husband and family and yet I was masking to the point of exhaustion.

Speak with your gp and school. It’s a long wait but assessment is the way to go.

"I don’t think she can control it at all - she got very upset and said she just can’t change the way she thinks."

She can change. We all can. It's hard for NT dc and so very much harder for ASD children, but you must convince her that she can OP. Because she can.

Btw, to placate, and encourage an upset dc, most mothers would naturally tell said children that they can change. Your'll help them. Why didn't you do that intrinsically OP. Do you too struggle with social things? Have ASD yourself?

@asleeponthetable
I agree re possible PDA. I linked the Ross Green book earlier to OP. She hasn't yet mentioned buying any of the suggested books that many different posters recommended though.

Wacademia - your response to hers was exactly, literally exactly the same.
It took a really long time talking for her to see how yesterday’s behaviour affecting anyone but her.
She even went as far as saying that I could have asked for a refund for her swimming ticket even though I hadn’t even mentioned the cost of it as that was actually the least of my worries yesterday.