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?

I don’t think it’s helpful for people to confirm it “sounds like” autism based on the OP’s posts.

Of course it is, other parents giving some advice based on similar experience is exactly what this site is for. It helps OP decide whether to pursue a proper diagnosis.

@wacademia exactly why we got dd assessed .. she is so normal in a lot of ways but the diagnosis has helped her to underhand why she runs out of pubs because it's too loud and freaks out if she hears babies crying .. I could go on but some people on here seem to think autism doesn't exist in girls
HFA is literally a totally different thing to boys autism !! It presents in so many different ways it won't look like the boys !

I'm sorry to see latest post by OP. you have been offered very very good advice from a lot of very experienced (some with SN children themselves) posters but you don't appear to have taken it on board at all. Or maybe I'm being too harsh.

You say she cried and doesn't want there to actually be anything wrong. Bless her. We get that. This is not uncommon. She's in denial. She doesn't want to accept it. But in time, she will have to.

So what you do is gently prod. When the time is right you talk to her. Explain that you understand how do she feels and you totally get that and it's hard when you don't want something to be how it is. Because you love her it's your parental duty to help her and supporter and you really feel that what you need to do:

.......a/b/c. And then when you think she can cope with it things you tell her that you really feel she needs to be assessed and you'll get some books to help her etc.

You say in your last post that you are not stuck. But you aren't. You are the parent and you have to parent and you have to do the right thing and you have to be proactive so you have to start doing all the things everybody has advised you to do:

speak to the GP, speak to the Senco, arrange for assessment, and buy books etc. You can do this all now. It'll take ages before any of it comes to fruition and you get any appointments. So in that time you talk to her to prepare her.

You don't just not do these because you're child isn't ready for them. (I know it's always better if a child is induce, for say counselling, in an older teen. It's almost pointless to force some children to do what they don't want to do).

But this is different. This is a medical thing she needs doing, but she doesn't really want. We get that! But parenting wise you do actually need to do this. Because she needs help and support. (She just doesn't recognise it yet!)

Even if it isn't Autism. Even if they decide after the assessment that this isn't the case for her: The fact is she is struggling. Fact. she has very bad anxiety and her social skills are not the norm. so she will need help. Of some sort. to get her to the same level as her peers.

I hope you have success.

I hope OP manages to find a way forward.

I'd just like to point out that PPs talking about "girls autism" and "boys autism" are misguided.

Absolutely, girls have an uphill battle being recognised, assessed and diagnosed (I know because that's my own lived experience). However, boys can also present this way (as my own DS did) so if any parents of boys read this thread, don't exclude autism as a possibility because of a notion that boys don't mask their differences in the way that girls do. They can and do.

@TooFewSpoons absolutely, my DH still does but he calls it ‘assimilating’! To make light of it. He was in a cult with his family as well so he had to hide everything and despite being highly intelligent and academic they thought he was ‘slow’. It was just the energy taken to assimilate drained him.

I am sorry people think I’m not taking in what’s being said - I really am, I was merely saying I feel a bit heartbroken because it’s going to be difficult forcing an assessment on her if she stays adamant she doesn’t want it.
Ive ordered all the recommended books people have mentioned.
The being a vegetarian is a concern of mine too for the people who have mentioned it although her food portions have stayed a similar size so I think it’s more about controlling herself and eating habits along with the sudden realisation she’s been eating dead animals ( her words ) than wanting to lose weight.

Shes been making a behaviour chart for the dog this morning as the dog has been having a few accidents overnight - the dog is very elderly but she is convinced she is experiencing lactose intolerance or that she is rebelling and misbehaving so she’s now set up a whole chart to reward good behaviour etc

@Nobodylistens try not to panic or worry too much- I know I did but I wish I hadn’t! My DD didn’t want an assessment at first either, it took a few years. But you yourself, you don’t need ti wait for that to help her. I would read some books, can’t think of the author now but I have one on Asperger’s and anxiety written by an actual person with autism who is a specialist and psychologist. PM me if you like to remind me to check the title and author. You can also start taking to school and your GP without her and talk to someone about how to approach her about this. My DD didn’t want to do it because I think she was nervous about talking ti strangers, about what friends would think, and she thought it was for others and not her. After a few years she really wanted it herself. You can do a lot to support her in the meantime. Contact some orgs maybe too. But feel free to PM, our daughters are very very similar.

@Nobodylistens and I wouldn’t worry about the vegetarian thing, mine was at same age and now vegan and so are we all! A lot of girls with autism have ritualistic eating behaviours that others mistake for an eating disorder. It’s important to accurately see what’s happening with that. It’s a sensory sensitivity. It actually, for those that understand it, looks quite different to eating disorders. It’s not portion control, but control of what, how and when… no food touching, no mixing a bunch of stuff together in a dish, must eat certain things at certain meals and only those things etc etc there’s no connection to weight or looks.

My older sister was/is(!) similar. She didn't get an autism diagnosis until she was in her mid-20s. She had "friends" as a child, but once she went into secondary school, she's never really had any friends since (she's now early 40s). She has a few people I'd class as friendly acquaintances, but not what I'd call a friend.

Your DD does sound like she has some autistic traits, but it could also be OCD, and some social anxiety. They are often co-morbidities with autism, but it may not be your DDs main "thing".

Have you heard of pathological demand avoidance OP?

WahineToa

You were all vegan so that is entirely different. New veganism is a worry.

Links between Anorexia and Autidm are now being explored. I think Maudsley now screens for Autism on admission or they were talking about it. Anorexia can be incredibly difficult to treat if there is autism in the mix. I’d urge anybody who suspected autism in a child to just be mindful of the increased anorexia link. I wish somebody had warned me.

www.spectrumnews.org/news/anorexias-link-to-autism-explained/

I just wanted to thank the poster who recommended those books from Scholastic - they look great!

OP - it's a lot to take on board. I've benefited a lot from joining a Facebook group for PDA parents for my area (I found a link on the PDA Society website).

It may help your DD to meet others who struggle similarly. You could find them via a Facebook group or if you Google your local authority name plus 'local offer' you should find links to local groups and services etc.

It’s important to spread information and understanding and asking questions is part of that. So thank you for answering my question but I won’t apologise for asking it. No one has educated me or told me as a parent about various conditions or mental health problems and how to identify them or what the benefit of diagnosis is. We often see on MN posts wondering if their child is “normal”. I think all parents need better education and a better understanding of many conditions that are diagnosed in childhood and what the process and importance of getting this diagnosis is.

It would really help if it were easier to see a paediatrician in the UK. We've been on the waiting list for 6 months now (maybe....they won't actually confirm if we're on it yet!) and this is a second go as no-one would take a referral in 2020 understandably as nothing was open.

Meanwhile, my friend, who's bringing up her DC in Switzerland, sees a paediatrician once a year - it's routine. Parents can only get so far researching things ourselves. Pretty hard to know what's 'normal' with such a small sample size.

I have heard of PDA but haven’t come across a child with it

I’m embarrassed to say I’ve ended up in tears today after a trip to a massive swimming pool that was on DDs list of half term treats, a 3 hour drive and my 13 year old other DD who is now in there swimming alone has resulted in chaos.
DD who this thread is about, packed her costume before leaving, she has 4 to choose from and happily picked one out.
On arriving here she spotted one in the shop she wanted but they didn’t have her size.
She insisted on buying it with her own pocket money despite me saying it would be uncomfortable.
As soon as she had it on she realised it was digging into her shoulders but instead of then putting the original one on from home, she refused to go into the swimming pool at all.
There were other costumes in her size in every other colour but the one she had selected so she just refused to go in.
I can’t go in with older DD as I couldn’t leave younger one in the cafe alone so now older DD has gone in, upset.

DD is sitting on another table as blames me for her treat day going wrong.
i feel completely overwhelmed.

I just don’t see how she benefits from this behaviour so I can’t see it as her being a spoilt brat.
Surely at 11 years old a child wouldn’t want to miss out on the fun so even if they initially wanted a new costume and that hadn’t worked out, they wouldn’t just then completely refuse to participate.
Thanks for the unhelpful comments though

To understand herself better and to maybe put coping strategies in place if needed?

Why is this even being asked constantly?

@Badgirlriri why don’t you RTFT it’s been answered over and over again.

Hi OP, PDA stands for Pathological Demand Avoidance (which you probably know anyway), but the 'Pathological' part is that DC will avoid even demands that are things they actually want to do (obviously avoiding doing things you don't want to do, we can all understand!)

I have seen it more positively described as a pervasive desire for autonomy.

It's an anxiety based behaviour. The fixation on a particular costume is something I can imagine my own DD getting stuck on.

If you work with her to understand how she feels and reacts, this sort of thing will get better. Google PDA PANDA and you will find some strategies to try.

I had never considered this as she would never refuse something at school for instance - she is perfectly behaved there but does refuse to do A LOT of what I ask her to do unless it’s exactly what she wants

I should add that school holidays lack the normal structure of school and big treats are probably best avoided with anxious DC if they've seemed volatile beforehand - easy to say, I know.

Yes, so probably at school she masks and then it all comes out at home. There's a good piece of imagery - the 'shaken Coke bottle effect'. It's no good being authoritarian with DC like these - they explode or implode.

She may be anxious about the return to school as well. I know I am and I'm not autistic, and I'm a teacher!