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

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.

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.

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!

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.

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.

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.

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.

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

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.

Exactly like my 8 year old DD. No one would believe me what happens at home as she was ‘fine’ at school.
I bit the bullet, saved up and she had her private assessment as few weeks ago. She is autistic and adhd.
now the school will listen to me. Just have to sort out the support she needs now

She sounds exactly like my daughter, diagnosed with autism after we went private, currently waiting on adhd assessment. We were never taken seriously when trying to talk to school about what was going on at home as she was a model pupil and very social. At home it all crumbled. They only listened when in year 4 we struggled to get her into school and they had a glimpse of what was really going on. Trust your gut, you know her better than anyone. In my experience, girls are highly skilled at masking but amazingly schools etc still seem ignorant of this. Best of luck to you and your daughter x

Another voice added to say she sounds just like our 12 yo autistic DD.

Second the Not Fine in School and Dr Naomi Fisher recommendations

I agree. This was DD. School thought she was fine. No problems with communication. It was of course intense masking, which was exhausting for her. Her autism wasn’t diagnosed until after she left school.

100% this is what girls with ASD do. I took my daughter to the doctor's and managed to get a diagnosis after about 2yrs. Went to the school for back up - they didn't notice anything different about her. This obviously made me question myself and doubt wether I was right. Girls mask so well and schools are so busy. You don't need backing from the school to explore potential diagnosis with for your child.

As others have said it sounds more like ASD than ADHD if anything to me, but could also just be anxiety. ADHD is much more difficult to 'mask' and I would worry about paying lots of money for a private assessment and her not meeting criteria. Instead I would focus on getting the right support/environment at school. Support should be needs based and unless you would be looking to medicate a diagnosis won't change much. As others have said have a look at ASD resources and anxiety resources. At her age individual therapy for anxiety isn't that effective and parent led approaches are better. It sounds like she isn't coping with school environment but that doesn't necessarily mean she is Nd.

I also agree she sounds like she is autistic. The threshold for many assessments is geared at males so I would recommend finding an assessor who is experienced in assessing girls. It is not the same and not all professionals have kept up to date with the literature.
and I know dozens of girls with ASD who already considered ‘excellent communicators’. They have learned it to fit in socially.

Take a look at DefineFine, NotFineInSchool, MissingTheMark and Dr Naomi Fisher on Facebook.
They're incredibly informative and supportive spaces for children facing significant difficulties in education.
Wishing you and your DD well.

I would say with some certainty that she has autism alongside her ADHD. I'm a SN parent and this describes my son perfectly.