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?

@mistermagpie this sounds very similar to my DS.

My DD was like this to the point I thought I was imagining it as school kept saying they didn't see anything, until she had a meltdown at school. School think that she could cope with early years and they went very softly into year 1 as they missed so much of reception, but the expectations of year 2 are overwhelming her. They have put lots of support in place despite the very long wait for a diagnosis

To add to my earlier message after reading your update OP.
We just received the full ASC report for DD.
She's just turned 19. The questionnaire responses they got from her college didn't highlight any difficulties, it indicated she was neurotypical they said she was an excellent student but very quiet and sometimes a bit withdrawn.
However parental questionnaire and interview and child interview both indicated she is autistic. The professionals picked it up from their own assessment . They said she is excellent at masking but it comes at a huge emotional price.
They told me it's not unusual for schools to miss autism, particularly in children who are quiet and compliant in school.
So based on my experience I think if you went for a private assessment then would be able to assess her throughly even with a school questionnaire that painted a rosy picture.

This thread could be about my son. He's in Yr 5 and we have always suspected asd but school have always seen nothing. And like so many of you I am worried that I am imagining things I see, that the assessors won't see it. But for the first time last night he opened up to me a little as he was explaining why he didn't want to go to the school disco (the music is too noisy and it's too busy) and told me that it hurts his ears when people talk, and it's not that they're shouting, they're talking normally. And he can't do what he does at home when his head is funny (at home he does alot of pacing and walking in circles) so it ends up with him feeling headaches and dizzy. He also tries to find ways not to go to school - tummy ache, neckache, anything at all ache.
Now is the time for us to go on the diagnosis journey for him. See what it brings.

This thread is breaking my heart. So much so that I've had to skip some (with the intention to come back and read later).

My nearly 6 year old boy is the same. He's so violent to us on a daily basis and just emotionally wrecked after school.

We are very vocal to school about our opinion that there is a problem. They are supportive but won't do anything as he isn't disruptive.

We will be going private. It'll have to be a loan or something

It's eye opening to me to see so many people in the same position. Since my DC was around 3 I've discussed the possibility of ASD with both the GP and HV, deciding not to go for assessment at that time due to age. Now apparently he's not struggling enough to be considered for assessment - however a part of this is down to the adjustments we make on a daily basis to help him. And I think he is a master at masking in school. I plan to write out as much as I can of where he has struggles and what we do for these at the moment and raise this with both the school and GP. I'm considering whether to also try and contact CAMHs directly stating that my GP feels that a referral would be unsuccessful and asking how can they justify that. Still think we will have to go private though to look for a diagnosis as the waiting lists here are around 3 years.

We had this problem with my DD but we went to the GP at the end of our tether with lack of sleep due to her anxiety and he recognised some of the signs of ASD and put the referral in for us. Fortunately a very experienced teacher then supported us in Y1 because she noticed DD's complete lack of social skills and the effort she has to make to mask everyday. Although it might have helped that she had a phase of biting and she once saw me trying to get DD into the car having a meltdown out of school. Funnily enough DS has been at school 6 weeks and because he's got more 'disruptive' tendencies he's been flagged immediately. I've found both children were overlooked by the HV and nursery because they are 'very bright children' so there couldn't possibly be a problem 🙄

Watching this as my dd1 is well behaved and bright at school and holds it together all day there and than has meltdowns and hits and screams with us- often straight away at pick up. Dd2 is also bright and well behaved while at nursery but doesn't speak at all while there but this is currently being put down to anxiety. At home she is very impulsive and hyperactive. I wonder with all I read on mumsnet how long will it take for school to see some of what we see.

For parents of kids that received the diagnosis and you say it made a huge difference - can you please let me know how. What difference? How did it help your child, and you?

I am trying to reason with myself if to even start thinking about raising this (I mentioned at nursery and the response was - well we are all on the spectrum somewhere). Not what I wanted.

But I am basically trying to figure out if a diagnosis helps and how specifically - it's not like that piece of paper will make my child more conforming or cooperative - how did the diagnosis help your kids? Thank you so much.

My DD is exactly the same. Went for assessment and, although I had 4 pages of examples of behaviour ( meltdowns/ violence etc), they think that with more support at school this will get better, and they don't think DD has ASD. Review in 3 months - anyone have any wise words?) Advice?

Get GP to refer you. It's important you go on the nhs system. Then go private with a consultant who works at the nhs hospital you will be referred to on the nhs. Once you see them privately hopefully that'll speed up the nhs.

We are also in a similar position, explosive aggressive behaviour at home but angel at school. She has clear symptoms of adhd, school referred us to the community paediatrician but they refused to take our case further because they said she would be showing signs at school if it was bad.

if we go privately are we more likely to get a diagnosis? Or will they also reject it on the grounds that she is good in school?

losing all hope