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

Thanks @Coronado2 socially DD has done ok so far. She has friends and has been invited on play dates which generally seem to go ok, although these days she gets very anxious before a playdate, even if it's at our house. I have found playdates here to be stressful as she wants to decide what they play and has been known to sulk if the guest wants to play differently. So I have to help manage things sometimes.

School have seen no social issues, always said she has lots of friends. I have noticed she is finding things harder this year - lots of incidents of X only playing with Y and her (and others) feeling excluded etc but it seems to be a year 3 thing as lots of the girls are having these difficulties.

There is one girl she is good friends with but DD seems to be increasingly finding it hard to get along with her as this girl is very popular and lively and strong willed and prone to exaggeration. DD hates the exaggeration, says she is lying. Hates that she gets attention even though DD doesn't want the attention herself. But seems to seek the girl's approval too. She doesn't always understand that others may have innocent motives (e.g. exaggeration for comic effect isn't 'lying' ). But she seems to empathise with others' feelings and want to comfort when others are upset.

She wants to socialise and have play dates but gets very nervous (e.g. birthday party she has this afternoon, is really nervous as she doesn't know what they are doing - it's a a house not an external place, and doesn't know what food there will be). She does struggle in the playground when others want to play something different to what she wants to play. And sometimes used to sit on friendship bench in infants school rather than play a game that wasn't her choice.

Sorry long answer short, socially ok so far but signs of struggling. School think all fine.

Will go back and read more as you suggest. Thanks, hope you get the further assessment for your daughter

Thanks @WhatsitWiggle I think Iooked at the white paper you mention but set it aside when told unlikely she is autistic. Will re-read. And also, as you suggest, make a note of everything I do for her, everything she struggles with.
I hope things improve for your daughter, that sounds like a hard journey you have all been on x

Thanks @Rainallnight It is interesting how many PP are also mentioning fear of sickness. It's so hard to manage/help her with it.
Good luck with your DD, hope the CAMHS wait isn't too long

Thanks @EliflurtleAndTheInfiniteMadness I too have heard what you say about once ADHD is medicated autism can become more obvious.

If we got a diagnosis of ADHD I don't know if we would get anywhere near medication as she won't even take Calpol.

I don't know whether the clinic we are using has assessors who specialise in girls. I am wondering if I need to do further research and find somewhere else that definitely does.
We are on the list at the Oxford ADHD & Autism Centre if anyone has any knowledge/experience with them?

Thanks for the info on PDA. Will try to figure it out a bit further in terms of what drives it when she is demand avoidant.

I have a daughter like this, including the belly aches. Almost autistic but not quite. ADHD and sensory processing disorder are the labels we've been given. She is insecure at school and secure at home. So she "behaves" at school and then unleashes all the built up tension from the day as soon as she sees me. She'll reenact the negative experiences from school that day. The operant conditioning techniques used at school make her even more anxious so we decided to switch schools to a positive discipline lab school.

Yes I am worried she could mask through an assessment, but am hoping they will be experienced enough to pick this up!!

If the conclusion is no ND I will certainly be asking what else does explain her feelings and behaviours and how we can support her.

I will update when we eventually get a conclusion....

Thanks @Rosestulips I have been to GP re anxiety. He pointed me to CAMHS self-referral
CAMHS have now responded to say case closed, go to SENCO at school to get Early Help referral. Not sure what early help can offer for anxiety but will see what school say.

That isn’t true. I did/ do and so did/ does my daughter. We both have an NHS diagnosis of autism. I plan scripts, copy,change how I speak, obsess, go over what I’ve said, I know that how I want to communicate isn’t always socially acceptable . It is exhausting and anxiety provoking so I avoid situations so that holding it together doesn’t run out. Teachers are often not out in the playgrounds with children and if they are they’re surrounded by 100s of children. SENCOs are rarely in classrooms not in playgrounds. Classrooms are quiet and restricted. My daughter’s communication difficulties were missed until her teens when masking became more difficult. My autism wasn’t picked up until my 50s. Interestingly my son who also has an nhs diagnosis is less able to mask his communication difficulties and looks more obviously autistic. My daughter’s autism has however been more catastrophic and is supported by an EHCP. His isn’t.

https://www.autism.org.uk/advice-and-guidance/topics/behaviour/masking#:~:text=changing%20speech%20or%20tone%20of,as%20playing%20with%20a%20pen

My DD was diagnosed with ASD and ADHD at 7.

She's an excellent communicator - very sociable; very articulate. When you know her well, you realise she often can't infer meaning very well, however.

Teachers are not trained in this no. I've certainly developed skills in spotting neurodiverse kids (and adults) hiding in plain sight, but that's because of my parenting (and marriage) experience, not because of teacher training (we had a single afternoon seminar on SEN, focused on trips for some bizarre reason).

I agree with everyone else who says that it sounds more like autism than ADHD.
My child (Y2) is very similar to yours, from what you say, and has just been assessed for both - diagnosed with autism but not ADHD.

There are screening questionnaires for autism, ask the organisation you're using for the private assessment.

Just because she is sociable and communicates (my child is the same) does not mean she doesn't have autism; the key thing is differences in communication and they can be subtle.

Have a read of these:
https://help4psychology.co.uk/blog/children-who-mask-or-camouflage-their-autism/
and
https://www.pdasociety.org.uk/what-is-pda-menu/about-autism-and-pda/

I also found Casey Ehrlich really helpful: https://www.atpeaceparents.com/
She has a free "clarity masterclass" which is a recorded webinar all about PDA. To access it you have to sign up for the email newsletter but you can unsubscribe after watching it.

If your daughter has any sensory issues (either avoiding or seeking) then you might find it helpful to get a private OT assessment.

We didn't go private for the autism & ADHD assessment; we went the NHS Right to Choose route, but we had already got a private OT assessment which was helpful, and it means we now have money to spend on further assessments and support if needed. You can find more info about the RTC option at https://adhduk.co.uk/right-to-choose/

DH communicates well too (struggles with eye contact though). When you know him very well you can spot a bit of an "uncanny valley" thing. Took me years to realise it was because he is essentially acting a lot of the time in social settings, and he's very very good at it.

He doesn't have "meltdowns" but likes to hang out with machines for hours, fixing bikes and so on, or watch the same tv shows (men fixing stuff...) to regulate.

@purpleme12 you can find Naomi Fisher stuff here https://www.naomifisher.co.uk/

As for the anger, I started a few years ago looking at Positive Parenting Solutions, through that discovered Ross Greene's The Explosive Child, and since then other similar approaches (lots American) like Calm the Chaos and Tilt Parenting that have helped me understand the anger and manage my own triggers and reactions to it to help co-regulate with DD when things blow up. I am still largely failing miserably at it but at least I understand her so much better! Edit to say start with podcasts like Tilt Parenting and that has pointed me to other resources etc. and can be easier to listen than to pick up a book.

The anxiety I have found harder. I would say I am anxious myself so again, I understand it. My DH admits he doesn't as he's just not ever anxious. But tackling it is so hard. I have been recommended a book I have bought but not yet read Helping your child with fears and worries by Cathie cresswell and Lucy willets. I have looked at the Thrive Programme and how it approaches things. I have just tried to make sure I am validating her fears and feelings rather than accidentally dismissing them with 'dont worry' kind of comments, and tried to help bring some logic and some coping mechanisms in. None of it is making any significant difference yet but at the moment I feel the best I can do is not make it worse and give her as much love as possible. Will see whether Early Help can give me any further help.

Aw OP you are doing really well given the circumstances!

Thanks @whatevss yes it was the psychologist view that steered me away from autism. My big question is whether ADHD 'alone' can account for the depth of anger, anxiety and despair, or does she have anxiety to the degree that it warrants a separate diagnosis, or is ASD at play or something else. At this point I just want to know how best to help her. x

Ok so I don’t agree with your psychologist. This sounds 100% like my daughter (14 now) ( though we masked until year 7, I think being off during covid helped tbh)

I took her for a joint ASD and ADHD private assessment and she was diagnosed with both ( high functioning autism and inattentive adhd) . She is a great communicator , chatty and seemingly confident ( on good days) she is a school refuser , it’s very challenging at times but has been better since we’ve understood her better.

Do the joint assesment, I try for school everyday. I have also researched alternatives. Does she have a CAMHS key worker?

edited to add , our primary school thought she was fine for years. Then on top of. Her anxiety she developed OCD, then a mild eating disorder and self harm. Then basically had a nervous breakdown. She was not fine and I wish I had taken serious action sooner.

Thanks for all the replies that have come in whilst I have been replying to the overnight messages! Will come back a bit later when she is hopefully at her activities...

Just to add, there's a free screening tool here that you might find helpful:
https://help4psychology.co.uk/free-screening-child/

@seriouslynonames

It is a hard choice to make on whether to stick with school or home educate.

Thankfully, I applied for an EHCP in year 6. It took about 1.5 years and two tribunals to get it anywhere near decent. However, it meant that going for a special school was easier as we already had one in our hand. Plus, it protects her until she's up to 25 years old.

She is academically highly able but is limited to about 5 GCSEs with it being a special school so she will need extra time to get more and for growing up time. Having the EHCP protects her and gives her that time. I'm not going to lie though, it was very stressful getting that EHCP. We had to spend about £3,000 on private reports to get a decent EHCP and to win at Tribunal. Plus dirty tricks were at play. You need to be one step ahead of the system to win.

She can't cross a road by herself as the basic executive functioning is not there. She could dress herself at 5 but now needs support with dressing and washing because of all that she's been through, her time blindness and low executive functioning. We really started to see this coming out at about aged 8. The more pressure to be independent, the more she couldn't cope.

It took two years at her new school to make a lovely group of friends. She still doesn't like school (when she should love it as she's so able) so we have to get through each day, one day at a time. But at least the school is supportive.

Part of me feels that, on reflection, we should have Home Edded from the off. It gives you more flexibility. However, I I'd find it hard trying to hold down my part time job while having a child at home. Also, even though are groups out there you can go to regularly, I think that she would of struggled with friendships. She needs that daily contact with the same people. I think the compromise would have been doing a half day of online schooling. But, obviously, that costs.

But, seriously, that school will be chipping away at your child's self esteem. I'd suggest starting now to look for a school that really gets it.

@seriouslynonames you mention you're on the wait list in Oxford. If that's your part of the world, then I'd recommend Katherine Goodsell. She's Milton Keynes / Banbury way. Offers an initial consultation for about £300 which would help determine if your daughter's difficulties are autism or something else. Totally gets girls and how the presentation can be different.

Early Help are not generally SEN specialists. We had an amazing lady but her focus was on trying to get my daughter back into school. Although when it was clear that wasn't happening, she did refer to other departments to get help.

Have a look at "anxiety gremlin" book as that might help a bit. It's a workbook for children, based on CBT.

I’d be a bit careful re going non nhs. Lorna Wing are experts re diagnosing girls. If we hadn’t had my DD’s and my diagnosis expedited under the NHS it would have been the only place I’d have considered outside the NHS.

Don’t be fobbed off by school. We were told my dd was fine. I knew she wasn’t.This was catastrophically wrong and she now has 4 x NHS diagnosis including autism and an EHCP.

https://www.autism.org.uk/what-we-do/autism-training-and-best-practice/diagnostic-services

If your DD communicates and interacts typically for substantial periods of time, she isn't autistic. @whatevss are you a professional? This is so incorrect, particularly for girls. Please stop spreading false Information.

Exactly like my autistic DD8. Are you in Kent?

@CucumberBagel no, Berks/Bucks

Thank you

Are you getting Early Help?
I would be really interested in how you get on with Early Help and whether it's worth it and what you get from them

This sounds just like our daughter and also myself at school. We are waiting for a adhd diagnosis for her and I myself have one. She hated school so much we have been home educating her since September. She is so much happier and relaxed, I see so many other children in similar positions. I know it’s not possible for everyone but it could be worth looking in to. Depending on where you are there are so many amazing things to do with them. My daughter goes to a child led group a few times a week where you can drop them off. School also wouldn’t take us seriously about the masking. It really sounds like your daughter is masking some type of ND. It seems like as long as they don’t cause problems at school they often are too interested. You could also perhaps look in to flexi schooling where they go to school part of the week. Good luck it’s very hard !