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 all. Sounds like I will be ringing the clinic Monday to ask about autism assessment too....!

OP have you looked into PDA side of autism? Your daughter sounds very much like mine and I heavily suspect my daughter has PDA but like your daughter she masks all day at school and school told me she is "fine" so that's all the help they would give me. Once she's home she's a different child and says some really harrowing things when she's dysregulated, she's very very negative too.

I'm seeking a private diagnosis as our NHS assessments are now full and at capacity for referrals apparently.

I'd read up heavily on pda, I think finding a psychologist who has great focus on girls and autism and pda would really help.

Thanks @Hamsternautss I have indeed considered PDA. A friend's son has this presentation so I have read a bit about it. And my DD can indeed be demand avoidant when dysregulated. But equally some of the time she can follow demands - at school/extra activities (though of course this is where masking could come in) and at home she can sometimes be totally fine with being asked to do stuff, depends what mood you catch her in. I did ask about this and I think the psychologist said some amount of demand avoidance is seen in ADHD particularly when dysregulated so it was consistent with that and didn't necessarily mean PDA. I will revisit all of this now all the replies are saying autism!

Good luck with your journey x

Same age daughter, also going through the assessment process privately. Sounds very similar, school adamant she’s “fine” and no issues. Apparently this is very common with girls

My daughter masked her autism in nursery, childminders, school. I used to wonder what I was doing wrong that everyone else got the quiet, well behaved child, and I got the explosive tantrums, the disobedience, the tears.

I mentioned possible autism to nursery and ADHD to primary. Both rejected it - "she's fine", "we don't see what you see". Even into secondary.

At 15, after years of being anxious and emetaphobic, she burnt out. Just point blank refused to get out of bed, screaming and crying that she couldn't go to school. That was December 2022. She hasn't been in school since March 2023. Doesn't want to sit any GCSEs this summer because she has missed 75% of the curriculum. This was a grade 6-8 student reduced to someone too scared to leave the house most days. Any activity outside the home leaves her exhausted for another 2-3 days. Secondary school was just too overwhelming, and Covid lockdowns were perfect - all the learning, none of the sensory overwhelm. Had they not happened, we'd probably have realised 3 years earlier.

Take a look at the white paper by Autistic Girls Network. Write down all the things that sound like your daughter. Go to the GP and ask for a referral for ASD assessment and Right to Choose a private assessment due to the wait times. It'll still be 6-9 months but that beats 3-4 years on the NHS. If you have funds to go private, by all means use them, but you might prefer to save that for therapy.

In the meantime, speak to school SENCO, explain your daughter's needs eg the noise is too much, can she spend breaks and lunch somewhere quiet. No pressure to put her hand up in class or teacher to pick on her. Anything and everything. There's something called "ordinarily available provision" - Google that and your county. That is everything your school should provide without an EHCP ie within their normal funding.

With everything in place, if your daughter is still struggling, apply for EHCP and make sure the school say they can't meet need.

Also keep a diary of everything you do for your daughter in a week - do you have to help her brush her teeth because she hates the feeling, run a bath because the shower feels like needles on her skin, only buy certain foods. Really hold a spotlight to what you do. Check with another parent, do they do the same for their child? If not, consider a DLA application. You don't need a diagnosis, it's based on level of support needs.

DD, 7, also in year 3, holds it together school and then it all goes to shit at home
violence, non-compliance, anxiety etc. And sometimes fine. A gorgeous funny sweet girl.

We recently had an episode of school anxiety and refusal (interestingly based on fear of being sick at school like your DD). The Dep Head got involved and asked if we’d ever considered ASD, girls masking etc. I was so grateful and relieved. I know we’re very lucky. They’re referring her to CAMHS.

DD is adopted and some of the same behaviours show up as a trauma response so that confuses things. But we’ll see.

Yes she could mask that completely. You could be describing my 10 year old DD. No one would know she's Autistic by her behaviour either at school or out and about in the world. She also has diagnosed Anxiety and social anxiety though and there's a lot of cross over.

You need a diagnostic specialist who works a lot with Autistic girls and has a lot of experience diagnosing kids that mask well. It's very different to diagnosing children that don't mask and a lot of specialists can miss the more subtle signs. Same with the ADHD I'd want to see someone who works with girls a lot. We actually got lucky at school as she ended up having a teacher that had worked in SEN schools for many years before coming across to mainstream and she could see it was a possibility and very supportive of us getting an assessment.

I will say in terms of assessments start writing down everything you notice now and when you remember things starting, how often she does certain things, it's a very intense process and the more knowledge you can provide about your daughter and her behaviours and needs the better chance you have of getting the right answers from the diagnostic process. If you can find someone that can assess both for ADHD and ASD. One thing to keep in mind I know some people with kids who have ADHD and have found that after medicating the ADHD it becomes a lot clearer that the child is Autistic as well. The ADHD itself seems to mask Autism in some children that are both.

There's a lot of cross over with various conditions including mental health ones like anxiety. Being demand avoidant when dysregulated is fairly normal, that's about the ability to do something rather than being driven by an inability to cope with demands. DD is demand avoidant when her anxiety is bad or she's dysregulated, but its the doing of those things that she's avoiding.

I'll preface this by saying this is only one person, but an interesting insight into PDA. I follow an Autistic woman who is well know where I live and has PDA too. She has trouble even with self imposed demands. The fact it's something she wants to do doesn't make a difference, she's still fighting that same thing in her mind that absolutely doesn't want to engage with anything that could remotely be considered a demand no matter how beneficial it could be for her or how much she wants the outcome. Although anxiety or Autistic overwhelm can result in the same outcomes the reasons driving the behaviour are very different. DD is fine with demands when she isn't really anxious ot overwhelmed. Her Autistic brother on the other hand might have PDA and struggles with any demands.

Look up Tania A Marshall - signs of autism in bright young girls.

My girl was diagnosed aged 8. The school persistently denied seeing anything. Their response if that she's doing well and 'fine' in school. We saw it all at home, tonnes of anxiety and distress.

She had a breakdown a few months after leaving Primary School.

Still recovering several years later. She is now able to talk of the fear she had at Primary School. She is traumatised by it.

So, I would move your girl to a school that understands SEND better. You're on a hiding to nothing with a school that doesn't 'see' SEND. Apply for an EHCP (no diagnosis required) or home educate. I think the toughest years are between 10-14 years.

Trust your own instincts. You know her best!

And the breakdown was horrific. My other half and I had to take turns sitting with her an hour at a time. Any more than an hour without a break and I think that we would have cracked up too.

I had to spoon-feed her to get her to eat. It really scared me how unwell she was. We pulled her out of school for 6 months while we fought for a special school. This is a child with a very high IQ but she needed the special school because of the environment, mental health support and small class sizes.

Hi OP,
Lots of good advice here. Your DD sounds very like one of my DC who masks extremely well but crashed out of school part way through Year 7 as it was all just too much.
Absolutely agree re Naomi Fisher, she's great. More reading (sorry) - I'd also suggest The Secret Life of Rose by Rose (and Jodie) Smitten, and Untypical by Pete Wharmby (if only the chapter on schools).
I hope your DD is ok and you find a way through that works for her.

Thank you for your reply @Sortitout71 I hope you are all doing better now, what a stressful time. I have started to think about alternatives to school, it all feels a bit surreal to think of de-registering and home educating. I know there are options that avoid electively home educating but it sounds like it can be a long and bumpy road to get there, if you get there. So much to think about

Thanks @halesie I will add to my reading list! I hope your daughter is doing better now

OP, I recognise everything you say here about your daughter. This was me as a child. Even now in my thirties I struggle so much with being expected to sit still and look at people directly, and when lots of people are talking in the office I am so distracted and distressed I want to cry. But, I am very "successful". I have a first class Oxbridge degree and my teachers always thought I was perfect. It's very very possible for clever little autistic girls to mask -- there's only a "problem" in school terms if she's failing academically, which she isn't.

She wouldn’t make up how she’s feeling. She just masks it well at school because she has to, to get through it. And if you were a less caring and interested parent, you’d be oblivious too. I think trust your instincts and what you are hearing from your DD. It’s good she can talk about how she feels with you.

My dd is 22 and we are just now becoming to realise she has been masking her whole life.
If I knew about this when she was at school I would have got her assessed. But I didn't know this was a thing and she's always been incredibly intelligent and exams were easy for her, so there didn't seem to be a problem.
She managed to graduate with a first class science degree last year but university was not easy for her. Work wise she coped well but socially not so good.
She's deciding whether there would be any benefit to getting a diagnosis now. She has a job and her anxiety is much better since leaving uni, so not sure a diagnosis would change anything.
But yes, she hid it all extremely well and no teacher ever mentioned she may have autism.

My dd is diagnosed woth ADHD and almost certainly has autism as well. School didn't see any signs woth her either and rarely do now part way through secondary school, she masks so well. She got a diagnosis because it effected her at home and socially so significantly. Is your daughter affected socially?

As she gets older it becomes more obvious that she has autism as well. Her ADHD nurse has suggested it and we are considering going for a diagnosis. There are some quite outdated thoughts on autism, particularly in girls. It is probably worth doing some reading and seeing for yourself if you think this sounds like your daughter.

Please please please come back to this thread to update if you can when you get her assessed op as I would really love to know your outcome.

We have a very similar situation, my daughter also says similar things about school yet loves after school clubs and activities. I find it all very hit and miss with her too as some days she seems very happy to do tasks I ask her and is completely "normal" for lack of a better word, and I end up completely questioning my own sanity until she has a meltdown of epic proportions over something insignificant and starts crying and telling me she wishes I was dead 🙃

Our school senco told me no way its pda as pda kids cannot mask all that time at school but lots of sources online say the opposite. I'm slightly worried that we get her assessed and its completely NT and she has sort of masked the entire assessment and it looks like I'm making it all up.

Hi, my daughter displayed a lot of the same traits as yours when she was about year 3/4 and school like yours insisted she was fine. Mainly because she kept her head down, did well at school and was quiet and generally non problematic.

I saw a different, difficult side of her at home to the point I went to GP to get help for her anxiety, especially around vomiting. This was in year 5. They referred us to CAHMS and ASD was mentioned so we were put on pathway for Autism assessment. They observed lots of masking. Unfortunately due to delays mainly due to covid, it took until year 9 for her diagnosis to be made. Asperger’s.

@seriouslynonames you said you've looked up how to handle the anger and anxiety.
What have you found to be the answer?

And you also said you'd done some Naomi Fisher webinars? What are these about and how can these be accessed?

Asking for me and my child

Would echo previous posters and say ASD could be at play here. Could be behaving the way you described at home because she's struggling with the amount of effort she has to put into masking herself during the school day. Possibly ADHD too but I think this sounds huge amounts like ASD.

Yes she’s masking well. We had similar. We now home educate and I have a much happier child

An autism diagnosis requires evidence of persistent deficits in social communication and social interaction across multiple contexts, as you've noted.

A psychologist has confirmed your DD's communication is typical, and her school states that her social interaction is too.

Re masking. Some children may be able to hide their stress, anxiety or low mood by, for example, smiling when they feel sad or refraining from lashing out when they'd rather not. But an autistic child can't play the role of a neurotypical communicator. It's impossible.

Core autistic differences can't be masked by children when it's inconvenient, and it's extremely problematic for posters to suggest they can.

If your DD communicates and interacts typically for substantial periods of time, she isn't autistic.

This isn't completely true, lots of people with autism, particularly girls, spend a lot of time learning and practicing social skills so they fit in. For example practicing facial expressions in the mirror, preparing scripts for social situations, forcing eye contact etc. This means they can appear to have good social skills to people who don't know them well, but this takes huge amounts of effort and often leads to huge anxiety and burnout (so impairment). Often with girls, the ADOS isn't used as they will likely not score due to learnt social/communication skills. School will often not see more subtle difficulties and a 1:1 appointment with a psychologist isn't enough to highlight these either.

My dd has ASD. Her communication skills are excellent. Being able to converse well with adults is very common in girls.

They often will have excellent vocabularies and be excellent at making arguments. “Little lawyers” is a phrase that is occasionally used.