How to get ASD diagnosis when masking at school?

[Cloudylawn]

Dd 6 is a gorgeous little girl but has severe, varied and ongoing problems including multiple sensory issues, awful anxiety, serious behaviour issues including meltdowns with violence, lack of empathy, stress about change in routine etc. School are great and trying to support but say it is difficult to have a referral accepted if they are ‘fine’ at school. She’s is very much not fine at school (no matter how well she is hiding it) and is in a complete state for hours when she gets home. She can cry for 2 hours if her teacher slightly changes an activity from what was planned for example. I think she must be showing signs but because she is quiet and well behaved they don’t maybe notice them.

I was wondering if anyone had any experience of progressing a diagnosis when their child is able to mask at school?

Oh man , following but for a slightly older child and ADHD who masks very hard at school.

We had this slightly and then DS1 snapped in school and a teacher put the puzzle pieces together (we’d long suspected). We went private because the wait was so long. School were brilliant and quietly put a lot of stuff into place and now the diagnosis is in place a lot more are dripping in.

We went privately as the wait for an assessment was approx 3 years, it’s good your school are supportive as even with a diagnosis they don’t really believe us.

I had this with my son - I was going to refer anyway but luckily his new teacher noticed within the first week.
Girls mask so well and signs are often to harder to spot for those on the ‘outside’.
Can you not self-refer or ask the GP to put it through? CAMHS will often observe loads of traits that teachers don’t necessarily see so I wouldn’t let it put you off x

It took us over 5 years to get a SENCO on board, my DD was in secondary before things really kicked off. We finally got our diagnosis earlier this year, age 17. The masking gradually gets harder and the ASD becomes more noticeable as the child struggles with ‘normal’ and all the nuancing that starts as they grow up.

and yes as PP states masking becomes harder as they get older - when expectations and pressures increase so I’d try and get the referral done in view of the long wait times x

Pay. Sorry.

We had similar with dd. She wasn’t affected by changes to her routine but everything else you mentioned, she struggled with. We struggled with her at home but she was fine in school (so we thought it was something we were weren’t doing and blamed ourselves 🤦🏽‍♀️). Once she got to y5, she struggled more and the cracks started to show in school. It was at this point I went to the gp. They agreed to refer her to the community paediatrician and we went from there. She got her diagnosis at 11.5 yo.

Once they’re seen by the paediatrician, they will approach school and ask how she presents there. Awareness of asd in girls is increasing so I’d go armed to your gp with information about how girls often mask in school, and ask for a referral.

We have similar with DC1. GP was candid and said that school was the best option as they felt a referral from them would be turned down - this was based on recent cases where they had referred. However school don't see any issues and I believe this is also due to masking. We are trying to find the money to go privately however it does concern me that this may not be taken seriously by the school anyway. So many kids being let down. And parents too actually, we have also spent years thinking we were doing something wrong.

I feel for you and DD, I have two autistic teen girls recently diagnosed.
They masked a lot at school, primary school raised no issues for either. Younger DD started to avoid school at secondary school , barricade herself in her room. So at that point secondary school did suggest ASC. Went through long triage process, lots of form filling, and was eventually accepted onto waiting list for diagnosis that was about 3 years long .
Secondary school didn't pick up anything for DD1, I suspected she may have been autistic from when she was a toddler but always thought school or nursery would flag up any concerns- they dont unless their autism starts to impact the school.
In the end we had private assessments for both of them, private assessments cost around £1750.
I would push as hard as you can for assessment. In our area you can self refer.
It is likely to get a lot harder once she transitions to secondary school. Good luck.

DD2 wasn't picked up in the early years, despite me raising it. When she went into year 5 she fell apart and they finally realised they had a problem. Diagnosed in year 7 but needs not met. Fell apart spectacularly in year 10, ended up out of school, and has just started at a specialist school in year 11.

Our eldest has always masked at school or nursery and literally as soon as she walked through the school gate dropped the masking and was hideous. She is very bright and a model pupil.
For a while we honestly thought it was us and we were shit parents but then as our youngest child grew up and could cope with more than the eldest and we did more reading it all clicked together.

We moved house - and the new school had a very good SENCO and her class teacher supported the application as both recognised that she was masking .
We went privately for speed and it you very much could get a diagnosis if they masked at school.
Her diagnosis came mid year 6 and she's a different child and has been extremely well supported for secondary.

I agree with PPs: you go private.

Thank you so much for all your replies! I will go through and read them all and respond properly in the morning. So much appreciated 🙏

ok have had a chance to read and few so relieved by all your responses though sorry to hear so many of you have also/are struggling. Dd sounds exactly the same, appears to be model student at school then practically collapses once out of sight of her friends. Neighbour just had to watch us pretty much dragging her screaming out the house for school where she then started kicking the car over and over. I’ve always felt like a lousy parent but dd2 is totally different, just sad she has to live in this high conflict house.

anyway school are happy to refer her so that is good. My worry is that without evidence from school the referral will be rejected. They said if this happens it doesn’t mean we can’t refer again at a later date. GP doesn’t want to know says it’s a school issue to sort. I do wonder though to you the severity of the anxiety if she could at least be diagnosed with Anxiety as a start. Might push back and see where we get. I’ve said to school we can pay to have her assessed privately but what happens if she just masks during the assessment? How can they ‘see’ it? I sometimes feel like I must be dreaming as no one else sees it. Grandparents get a bit of a taste but not like we do.

so yeh, basically can get a referral/assessment but don’t know if that means much of school not seeing it. Surely though she can’t be that good at hiding it? Surely she would show signs if you knew what to look for?

I agree that they would see it if they knew what to look for. I'm not being down on teachers as they are not generally additional needs specialists which is what's needed to decipher the possible from the actual but subtle to the lay persons eyes.
What helped us was me being very specific in my concerns of my observations of my child and the school nursery teacher taking it seriously because I'm the parent even though she hadn't seen the same behaviour.
She then contacted an school outreach team who sent her specific things to find out and observe. She documented these observations and then realised she didn't know what she wasn't seeing. The referral then went through despite the hv not thinking we needed it. She was diagnosed at 5 with aspergers. I feel teachers were still sceptical of the diagnosis at the beginning of school because they compare to others. But the gulf in her social skills and need for control os now showing 2 years later. My persistence and the professionalism of the nursery teacher was the key.

Thank you for asking. We have been thinking for a while that there might be "something" but it's now in P3 (age 7) that we are speaking with the teacher to let her know our thoughts on DD.
The teacher has mentioned a couple of small things which could be signs of bigger things so I'm hoping the ball can be set rolling with her support.

I could have written this word for word, we are going through very similar right now with DD aged 4. She is a model child at school, but is full of anxiety and emotional outbursts and sensory issues at home.

Her pre school referred her as they witnessed some of it when she was 3 but her new teacher says she is fine. The SEND team are much more knowledgeable and understanding of masking but do not see her on a daily basis like her teacher.

From what I've been advised is to record whatever you can to show the school what your DD is like outside of the school environment. I haven't been able to do much of this yet as it is a challenge to do when she's already in distress.

I wrote a list for school of all her behaviours at home and have asked them to observe her to see if she presents these behaviours. I'm not expecting them to see anything to be quite honest, as she's so darned clever at masking.

We are considering private as the waitlist for just the initial appointment is 10 months last time I checked, and then the pathway takes a lot longer from what I've heard. Like you though, my worry is that she will mask during the assessment. We had a speech and language therapist visit our home and she did not think she was autistic (despite some obvious traits she was displaying!) so I doubt myself daily. If we do go private I want to make sure we choose someone who is clued up on masking and the presentation of autism in girls.

We have been in basically the same situation with DS for a year (he's 7 now). His teacher literally said to me 'I honestly don't know the child you are talking about', I took videos of a couple of his violent meltdowns- he trashed my kitchen last Christmas- which was horrible but I had to try and make people believe me. DS is so good at school, absolute model pupil, I understand that the teachers just don't get it.

The GP says it's a school issue, but school won't do anything because he's not a problem for them. School nurse now only deals with looked after children (in care/fostering etc) because they are so stretched. He's too old for the HV. He has two younger siblings and we have physically had to remove him from the home one occasions for their safety.

I've often wished he would 'snap' at school so someone else can see it. He did once at his grandparents and they finally believed us.

It's incredibly stressful. DH and I took him out for a day once and he up kicking the car and both of us for over an hour. He has 'ruined' (I know it's not his fault) so many days out and events.

I have no advice although the 'explosive child' was quite a good read. I totally send sympathy, it's so hard.

Oh guys thank you all so so much for your responses! Feel so emotional reading them knowing other people having almost identical experiences. I feel like we are living in some kind of alternative reality. Struggling today as friend’s newborn died, my nephew has had an unexpected health diagnosis and also had a fight with dh last night (pressure just popped us I think). Just want to sit down and relax during chill time but feel I have to spend it researching stuff to help dd so we keep things moving forward as it’s so achingly slow.

I’m sorry some of you aren’t having the support you need from school. I feel so lucky that school are taking it really seriously despite claiming not to see these behaviours.

Had exactly this experience - CAMHS took very little notice of what school had to say (I wasn't impressed by their feedback but CAMHS said it "wasn't the worst" they'd seen). They understood that she masked in school and it was abundantly clear from her ADOS that she's autistic.

If I were you I would:

• ask clinicians directly about masking - how do they control for it in their assessments and interpreting school feedback? Share your concerns that she masks in school and that it may impact her assessment and ask how they control for it.
• make sure your own contributions are shit hot! I had about 7 pages of 'parental concerns' that I had submitted for her EHCP application that I also made sure CAMHS had as part of their assessment. Make sure you write everything down that you want to say and give them a hard copy - it should stay on her file and should prove really helpful as they look back over it to make their diagnosis
• finally, write down any signs of masking specifically that you see and share them (hard copy) with CAMHS. For my daughter it was
• constant low level 'sickness' (headache tummy ache tiredness) before school
• major meltdowns after school
• picking at her skin until it bled
• difference in behaviour during school holidays

She was diagnosed at 6 and it has made an enormous difference to her - wishing you the best of luck

Also, can you self- refer to CAMHS rather than school doing it? You will have far more control over the whole process that way

It’s very easy to fall between the cracks. Our GP was useless and no help at all. We lived on the border of one county, which DD’s school was in but our NHS services were administered by the other county. 2 years was spent with each of them saying ‘well, it isn’t us’ and pushing the paperwork backwards and forwards. (So fucking annoying) and we then moved and the new county just picked it up and ran with it.

You do need the school on board. Book an appt to go and talk to the SENCO and list everything that goes on. Once we had that in place, whilst not fast, it was at least straightforward. It was good to finally have confirmation of what I’d suspected for almost 10 years, but also upsetting that it was so bloody difficult.

I agree with it showing very obviously in the assessments. They are carefully crafted (even down to the set up in the room IME) to amplify quirks.
We arranged a private assessment for ADHD because school agreed there was a good chance that's what was going on, but she was too well behaved in school and doing too well academically (ie above national minimums, NOT that she was reaching her potential) to be accepted onto the oversubscribed NHS waiting list. Thankfully school were mostly in support of our application, although due to masking the behaviours they were seeing in class were much less obvious. Although DD1 showed the odd ASD trait (to my untrained eye), it wasn't enough for me to be confident that too was going on and I had assumed they must be related quirks to the very obvious ADHD. At the initial assessment the doctor said she wanted to assess for ASD too based on her observations. I also realised in that room just how much I have to subtly prompt her socially in everyday life - I have been unwittingly complicit in her masking. Biting my tongue and watching her flounder/fail to notice she should be responding as the doctor talked to her was really hard! I did a load of reading afterwards, and realised that she actually has a lot of 'female' ASD traits. In her ADOS assessment it was even more apparent, and the scales completely fell from my eyes!

You do need evidence from different settings, but I supported our forms with highlighted sections of school reports and her school dyslexia assessments, which showed very high scores in all areas except working memory (part of executive function) which was incredibly low. We also had feedback from her tutor who had assessed her ability much higher than what she was achieving in class. It all helps to build a picture if school are less than supportive or unobservant/unable to connect the dots.