To ask about ND masking in girls - school say she seems 'fine'

[seriouslynonames]

My DD8 is in year 3. Waiting for private assessment for ADHD (GP suggested quicker than NHS esp as infant school at the time saw no issues).

She is extremely anxious all the time, about lots of things, and it shows up in her body in the form of unsettled tum and nausea. She has short periods most days of seeming more relaxed and happy, but spends much of each day on edge, nervous, worried or angry.

She says she hates school, doesn't want to go. Being there makes her angry, makes her want to scream. She feels nauseous or funny tum most mornings (also for weekend out of school activities) and goes to bed feeling similar most nights. Says school is too loud, too many strict rules, being told what to do all day, can't concentrate, friendship issues make he'd upset or angry. She feels the need to move all the time. She only enjoys extra curricular activities before/after school, plus art. She isn't struggling academically so far. She also worries about feeling or being ill at school or others being sick in front of her at school. That's a big issue at the moment.

When I talk to school they say she is doing well, gets work done to a good standard, isn't disruptive, follows directions, keeps her desk neat, puts her hand up, takes turns, is polite and helpful, gets on fine with peers and adults etc. they can see the fidgeting but that's it. They have given her ear defenders and a wobble cushion after I mentioned a couple of things back in the autumn, but would not have offered if I hadn't raised it.

At home we see such a different side to what school see. Extreme anger, aggression, destruction. Very low self-esteem and very worrying negative self talk. Constant anxiety and physical symptoms/feeling ill with it. Always moving, can't sit still.

She didn't make it to school Monday to Weds this week. Said she felt sick and tummy felt jumbled up. Said it was worse than the usual nervous feeling she gets so I took it at face value and kept her off. Tried to go in Tues but ended up coming home before school started as felt sick and looked green. Then Weds she seemed better so got ready to go in then it was too much, she just couldn't leave the house she was too nervous about still feeling ill and absolutely would/could not go, hates school, doesn't ever want to go.

Spoke to school today (she went in today/yesterday after a struggle) who want to address the school avoidance but repeated that when in school she seems 'totally fine'. And to be fair to school, when she comes out at the end of the day she is generally ok. It's only later in the evening when it all goes to s*.

I just want some views on whether it's possible for a child to mask so fully that despite me having been pretty open with the school about what we see and what DD says to us, that school just don't see anything? Surely DD couldn't make up all this stuff she tells us about how school makes her feel? We know the anxiety is very real and the anger. And I believe what she says about how school makes her feel. But then I start to doubt myself when school say how completely fine she is!

Would welcome others' experiences of masking please x

The school know nothing.
I was palmed off for years and went to all the parenting classes. My dd is now in year 10 and it's a total car crash. 2yr wait for an ASD assessment. She's not been at school since September and I can't see her going back.

I wish schools and the various services would do what parents ask for when they ask for it. So many children would come through unscathed that way.

Primary teacher here, and mum to a very successful at masking girl who we are finally just starting assessment for at 15.

The children in my class who are masking are VERY good at it. I know they are masking because I listen to their parents, because I know what it's like to have a child who melts down at home but doesn't at school.

Because they're on my radar, because I've listened and because we're half way through the year, I'm better at spotting when they're struggling despite masking but it's still hard. They are masters of disguise.

I am vocal in my school when I hear someone saying "but they're totally fine", and if it's sometime new who didn't know my daughter, I pull in her old teachers to add to the argument 😂. They often say they feel so guilty for not seeing it in her but, unless you know her VERY well and see her in different situations, you wouldn't recognise it in school unless you have experience of it.

Just to add DD was "fine" in school but they believed us when we described what was happening outside of school. Everyone looks out for her. We had an episode of ableist bullying (outside of school) recently and they came down on it like a ton of bricks when they found out.

The staff are really decent. The Head is fab. She sat next to DD at a panto once because she was scared of the "wicked stepmother"!

Masking all day (and even at home) is possible. Especially for bright girls. And schools really aren't great at spotting the less well-known signs.

I don’t agree with this and I say this as someone who is autistic and has two autistic children. I think that there can often be quite a divide between how autism shows between boys/girls and girls, especially bright ones, can be incredible at masking and copying neurotypical behaviour to fit in.

Does she have lots of friends or is the reality that she is on the periphery of lots of friendships pairs or groups and not quite fitting in or feeling that she fits in? Does she need to control the way the play goes and can’t cope if she can’t make the rules? Does she have a fear of missing out but not the emotional resilience to go ahead with the plans or suggestions previous agreed?

These are all examples of lacking social skills in an autistic girl.

The recent Chris Packham documentaries included two adults, a man and a woman, who were able to mask quite successfully in the workplace and in hobbies but who were not at fine at home.

Of course, Packham himself is another example.

The other two subjects were not able to mask their differences.

"If you've met one autistic person, you've met one autistic person."

Seems you need home therapy because she is so well doing at school

I'd work on self esteem. One of my dc found panicosaurus book very useful as visualised anxiety
We found teaching coping mechanisms worked well too
Legotherapy

That sounds exactly like my daughter- school said she was fine, just "quirky". She wasn't fine, she's autistic.

Diagnosed by NHS with ASD ages 16. Diagnosed privately with ADHD more recently. Part of the problem with school seeing a problem, is that she loves learning, doesn't like getting shouted at, and wasn't disruptive

I would look at ASD diagnosis, and also try to support her with managing her emotions now. Starving The Anxiety Gremlin is a good book. Also look at ADHD, if you feel she has it.

My daughter is extremely demand avoidant at home. She didn't show this at school, so didn't get a diagnosis of Pathological Demand Avoidance. However since moving into 6th form, she does display this at school. The more lenient rules, and lack of structure compared to years 7-11 at secondary are having a huge impact.

She has had a few years home educated, and her attendance is at around 50%. This is mostly due to anxiety, feeling sick/anxious and more sleep.

I wish I'd known earlier about the ASD, as I could have worked with her to find strategies to manage.

I'm a teacher and also autistic myself (very late adult diagnosis) so can see the situation from both sides.

Some children, especially girls, absolutely can mask so well at school that they don't show any of the difficulties and stresses that they are struggling with.

I was a high achiever and covered up my social and communication difficulties very well.

Thank you for all the replies, it's really helpful to hear others' experiences.

Thanks for the links to resources @NameChange30 . I had been wondering about at OT assessment, will look into that. I have heard of right to choose but have also heard providers can be variable and if it is ADHD we might need shared care if we wanted to try medication at some point. I don't know how all that works so will look into it some more. I know my GP should be in a position to accept shared care if it comes to that, with the clinic we are on the waiting list for as I checked this with him.

Thanks @Youcannotbeseriousreally No CAMHS key worker as CAMHS closed her referral for anxiety (pointed us to Early Help, we are yet to look into this with school as only just got CAMHS letter). The camhs referral form says if it's ADHD you are looking into them you have to get school to refer because she needs to show problems in both settings (home/school) and as school don't see anything other than a bit of fidgeting then I don't think they would refer. Infants school fobbed us off. Sorry your DD has had such a tough time, I hope things have improved. I definitely want to do what I can to avoid further distress for her, just trying to figure out whether that means home educating or addressing the anxiety but persevere with school.

Thanks @Sortitout71 re home ed and working. Right now I am not working (career break) but I do plan /need to get a job, and this is one of many factors in where we go/what we do next. Would just like to know for sure what we are dealing with first!

Thanks @WhatsitWiggle will check her out. Will also look at the anxiety gremlin book as others have also mentioned

@PaperCrane555 thanks. I have heard of Lorna Wing but it's a bit of a trek. Maybe we are taking a risk going privately. At the time we first looked at all this (mid-covid) the GP said the NHS is overrun - we were at that point looking forward mental health advice and support and just a sense of which direction we should be going in. It took us best part of a year to just get on a private waiting list, then that clinic said they think possible ADHD but not Autism and they only do the combined assessment so we were back to square 1 with waiting lists and where to go next. So I am loathe to start all over again but at the same time want to do it once and get the right diagnosis, even if it's that she's not ND but very anxious.

@purpleme12 not yet started with Early Help. Will update when we find out more.

@YourJadeCat thanks. Yes definitely considy the poss of home ed, but it's quite overwhelming to know where to start. Good to know Flexi school exists, I need to look into what this means /how you go about getting it agreed

@Taylormiffed sorry to hear of your experience. Yes parenting classes was what infants school suggested... I hope things improve for your DD.

@Corianderparsley thanks. Yes I guess it is very difficult to spot if they mask really well. School seems too believe what I tell them is happening at home but it's like it just doesn't compute when they don't have their own evidence. They are only getting interested now she has 'refused' school a couple of days...

@Phineyj that sounds like a really positive experience, it's good to hear there are some!

@TheSnowyOwl she does seem to have a lot of friends. She does occasionally say she feels different though, and says she can't show when she is angry at school as her friends would think her weird. She does prefer to control the game - certainly with us at home, and on playdates here we have had difficulty when the guest doesn't want to do what she wants. And in infants school she would sometimes rather sit alone on the bench than play a game of someone else's choosing. Yes sometimes to FOMO but not resilience to go ahead. Lots of her play with dolls/toys at home is recreating scenes from TV shows she has watched, even when it's kids being mean to each other or someone hurting themselves. She also loves playing schools... Just not going to school!

Thanks @Hankunamatata I will check out that book, and Lego therapy sounds good she loves Lego!

Thanks @DimLlaeth . We do get demand avoidance at home but not all the time. We have tried to become as low demand as we can, but then I feel I end up doing too much for her. I hope things go ok for your DD with 6th form

@DimLlaeth when you say college is having an impact, is this in a good or bad way? We were hoping college would be better because it is less prescriptive.

This is the age my dd stopped being able to hide that she was fine in school. I wish I knew then what I know now. I'm waiting for a diagnosis of autism and adhd. I'm ambivalent about it being official but it seems to be the only way of navigating the education system for her.
The Not Fine In School fb page is fab.

This

My dd had different symptoms but at 8 i knew she had adhd. School v unsuportive. Finally diagnosed properly at 14.5.

@WhatsitWiggle she's still in school, second year of 6th form. She's worse, as there is less structure. More free time, and she really struggles. She is pushing back against the rules that are in place.

She does the work, but her attendance is very poor. And she's on a risk assessment too, due to a second overdose (not in school).

She was in the wellbeing hub for all free periods, and had her pass removed so she couldn't leave school. That's been changed to an hour a day in the wellbeing hub, and she has her pass back.

If OP doesn’t mind, can I ask if anyone here has issues with major defiance in your girls and how you handle it?

I’m at my absolute wits end with DD today. Things she refused to do included going to the loo before we set off on a long journey, sitting down for dinner, using cutlery to eat when finally sitting down, lending her brother her spacer for his inhaler (he was really poorly and really needed it)

I ended up today being really shouty and feeling like I wasn’t handling it well at all. But everything is such a battle.

Can anyone relate? She’s 7.5

Wow your DD sounds so similar to my DS who is 7. I'm sitting in bed, he's finally asleep and just pondering the absolute shit show that was today 😅 I mean I could either laugh or cry it was that bad. We are currently considering a private assessment as I'm totally disillusioned with the NHS waiting times (I work as a clinical psychologist with the NHS although not with children). I think the psychologist was a bit quick to exclude ASD in my opinion (but ASD not my area of expertise at all so not sure). I hope things get better for you. We aren't sure whether our DS fits more ASD or ADHD but something just doesn't feel entirely "normal" and family life is very disrupted.

@Rainallnight I found the book 10 Days to a Less Defiant Child v helpful in figuring out what to do. Behaviour like this often seems from anxiety.

@Rainallnight my DD is like this too. Agree with @Phineyj it seems to be anxiety related. If she is anxious it often comes out as defiance or anger and we get absolute refusal. In terms of handling it, some things I have just let go - she sits down for dinner when she's ready not when I ask. I played her up some food so she doesn't miss out and she usually joins us after a few minutes. Cutlery is always there but often not used. Usually fine unless it's spaghetti or something equally messy when I might try a bit harder to encourage its use. other things like going to loo before leaving, I get everyone else to go or ask who is going first, you or me etc. sometimes works, sometimes not. I remind her the loo at home is nicer than the one at wherever we are going but if she still refuses I just drop it. Other things it's a case of very gentle nudging baby steps forward. Will also take a look myself at the book @Phineyj suggested!

My now 12 yr old had asd and adhd and this definitely was her in primary. She doesn't have to have a diagnosis for them to give her a sen care plan.
Mine hasn't been in school since Sept now as secondary school was brutal for her.
Schools will always tell you she's OK because neurodivers kids mask. I used to think she was high functioning but I was so wrong.
I wished I'd taken my child out earlier. She's still on roll and I'm fighting for her to have an EHCP (At mediation stage).
She never wanted to go to school since year 6 and always had friendship issues. No-one in primary believed she was neurodiverse. The teachers just don't get trained enough in it and secondary is a lot worse.

@Rainallnight I should have added to check out low demand parenting, it has helped with the letting go of expectations and reducing defiance

Thanks @Ialwaystry
That sounds hard, I hope you make progress. I am waiting for an appointment with the SENCO and ELSA lead in school but need to get myself organised in terms of what I want from them before I go in. Will ask about SEN plan /needs assessment

Tell them what you think she needs.
I.e regular breaks, reduced timetable. Someone she trusts to talk to. Mine used to take in fidget toys. she had to be told at the beginning of every day what was happening, She couldn't cope when a certain friend or teacher was off.
Don't drag ur child to school or allow them to forcefully remover her from you.
Just listen to your child and keep her off if necessary ( it's not worth it in the long run because she will lose trust in you).
My child became violent amd aggressive to me and now I low demand parent her.
Read as much as you can and the explosive child book/also on audio and pda.
She sounds like she is nearing burn out, which is where my child is now.