Challenge of getting a diagnosis for my daughter when she masks so well when she is not at home...

My son was diagnosed last December and is year 5. He was and still is to some extent high masking. He has had therapy sessions for 18 months now, his therapist mentioned early on that she strongly believed he was autistic. The good thing from that was that she wrote us a report for the school and Gp which backed up our claims. The school went from “there’s nothing going on” to now being very supportive. Maybe some sessions with a professional who specialises in neurodivergent individuals could be helpful to get things rolling? 

Please don't take this the wrong way. I'm giving my thoughts here and it's fine if you don't agree.

Firstly, I have a few questions - you don't have to answer me, they're just things I thought worth asking. Does your daughter want a diagnosis? What is the aim of getting an official diagnosis? Is there some additional help/support that she needs but isn't getting? If so is there another way of getting it? Is it the GP who won't refer unless school agree, if so have you tried a different GP?

You mention some late diagnosed women wishing they'd been diagnosed earlier. I was diagnosed at 48 and have no regrets about it not being earlier. Everyone is different and not everyone needs a diagnosis to make sense of themselves.

Self-awareness can be obtained through self identification without the need for an assessment - there are lots of resources to read and tests to complete that could provide more understanding. Would this be enough?

Obviously if you and your daughter really want or need to take it forward to a diagnosis that's fine. Just throwing out a few thoughts. 

My daughter in her 20s and will be seeking assessment hopefully this summer.  She's in final year at Uni so focusing on her exams at mo.  She was completely missed by school and us, she didn't draw any attention to herself throughout school which I understand is common.  Likewise at home, she seemed to be largely coping, had a number of good friends, and threw herself at her studies/exams,  she had weekend jobs in shops and volunteered too, so nothing to raise concern. The only time an issue was raised was during lockdown and she got diagnosed with Anxiety after her A levels exams (which she was primed to ace) were taken away from her year.

It's only been since I disclosed my late diagnosis two months ago that she asked about the online tests I did (Embrace Autism Tests) and scored high herself.  In the meantime I have shared a You-Tube channel  which hopefully she can start to find out more.

My son is ND and support at school for him was pretty patchy, even after his diagnosis in Primary school,  but he's done better since going to college at 16, getting an apprenticeship and now has a good full-time job. 

So think you've done well to spot the signs - and wish your daughter well on getting the assessment and thereafter the support she may need. 

Hi, I am sorry to hear about your difficulties. My son was diagnosed at 4 years old, and had a lot of help when he was at infant school, but unfortunately the level of support available decreased as he got older. By the time he got to High school, he looked like he was managing without it most of the time. But at home, where he could safely let the "mask" drop, his behaviour was very different.

I agree with Martin that you could record evidence of autistic behaviour at home and keep a diary. The school doesn't sound very helpful overall, but do all of her teachers think the same? Also, just a thought, are there any other settings which your daughter regularly attends, other than school, where she might not mask as much?

Depending on the age of your daughter, this will sound quite cold, you could record evidence of autistic behaviour on your smart phone. Also, or instead, keep a diary of her behaviour and problems. If you look up, online, the ICD-11 diagnostic criteria for autism, you can slot your daughter's 'symptoms' into the relevant formal criteria. This will give you a dossier of information to submit to the relevant authorities. The ICD system is the most used diagnostic manual in the UK. 

Intelligent autistics adapt to societal expectations by observing and copying. This is done consciously and involves a great deal of mental effort, which leads to exhaustion, melt-downs, shut-downs, and sometimes poor mental health. Autism is often characterised by social inabilities, but many autistics can do most or all the things neurotypical people do, except that we have to expend huge amounts of effort in doing them. High masking autistic children tend to exert themselves to be sociable in public, especially at school, but then at home they react to the exhaustion by needing to have lots of time on their own, or by reactive melt-downs. This is quite well known and has been written about in books and scholarly papers. A look on Google Scholar should give you access to reams of medical and sociological literature to bolster your case.

This is a very specific question, and I hope someone gives you an answer to it that will actually help navigate this. 

In the meantime, here's the link to the NAS Autistic women and girls information, which you may find helpful 

www.autism.org.uk/.../autistic-women-and-girls