Do I pursue autism assessment for reluctant 12 year old DD?

[TheMidnightBell]

I think my 12 year old daughter may have autism. I'd like to have her assessed but my husband is very reluctant & when I've tried to gently talk about the possibility of autism with my daughter, she insists that she doesn't have it & doesn't want to be assessed. I'm torn between trying to bring her round to the idea of being assessed or just letting her be & would like some advice from neurodiverse people or those with neurodiverse teens.

I know that a a diagnosis won't actually change anything but wonder if it would help in some ways. I wonder if she may need extra support for her GCSEs & I know how long waiting lists are for being assessed. I've tried explaining that it wouldn't mean that there was anything wrong with her & that it may help her & us to understand and deal better with the things she finds difficult. She just insists that there isn't an issue. Do I push it or leave it?

She is bright, caring & loving but has really struggled in year 7 & the things I thought were just quirks in primary school now seem more unusual & are making her stand out from her peers more. She wants friends but has trouble reading social cues, taking turns in conversations & noticing when she is boring people so often ends up alone. She memorises random facts, collects & arranges stones & has very specific & limited interests. She spends most of her time talking about fantasy worlds from books & Dungeons and Dragons & it can be very difficult to get her to engage with real life. She prefers hanging out with younger children & struggles to relate to her peers' interests. I could go on, but you get the idea. The more I read about it, the more I think that she has most of the classic symptoms of autism in girls.

Is it better to keep trying to persuade her? She is a lovely girl & I just want to support her to be herself & make her life as easy as possible. I'd especially to hear from parents with teen autistic daughters about this.

I should add that I think she's largely fine atm & happy to retreat into her fantasy worlds when the real world gets too much for her. She does find the organisation involved in secondary school really challenging though so I'm helping her a lot with that. I just worry that things will get more difficult for her as she gets older & may not be able to deal with the increased expectation of social sophistication & organisation skills. That said, I'm not sure how a diagnosis would actually help with this. Would it?

@TheMidnightBell , different diagnosis but I have dyslexia/discacular. My mother didn’t believe in tests so didn’t get me tested when a teacher asked. She managed to convince me I wasn’t dyslexic and it wasn’t until my masters degree a beloved mentor gently suggested they would set up testing that then finally I found out.

I cried upon learning this, once she unpicked what those diagnosis meant, I realised why academic life , though I was a top student was so bloody hard. Why I couldn’t do simple things like read a clock and how if I’d known I’d have had access to help that would have made school and my undergrad so much easier.

Now I know I’m ND the crippling imposter syndrome is slowly coming under control.

You’re her mum. If it was an illness you wouldn’t hesitate dragging her off for a diagnosis, same goes for this. I think you need to say, DD my job is to sometimes do things that you don’t like, for the greater good. You need to get the Dad onboard too. Your DD’s life will be a lot easier once she has a diagnosis, does he not realise right now she is being excluded from friendship groups?

Good luck OP, I’m sure posters with loved experience of autism will be on soon with more specific advice. 🍀

One thing that's worth considering is...the diagnosis process is very difficult with an uncooperative subject, and highly likely to be inaccurate. She can't be diagnosed from your testimony alone, and if she's got this far by masking heavily then she'll be masking her answers too.

Hard one to answer because as a late diagnosed person myself i wish i had known when younger, however i also have a child who does not want to persue a diagnosis and i cannot see how i can force it

i have decided to leave the door open for it.

I was an autistic teenager and my mum refused to have me assessed. So as time passed and I increasingly struggled to integrate, the school had no recourse. They received no funding to support me. They didn’t have any leeway to request adjustments from the exam board. Bullying was not able to be classed as disability discrimination and punished accordingly.

Later on I got no support or adjustments at university because I had no diagnosis. I was unable to request adjustments in the workplace, and without knowledge of my disability I was unable to find a suitable job, or to take employers to tribunal when they discriminated against me for being autistic. I was also unable to claim PIP to support me when I was struggling financially because autism affected my ability to work.

In summary, I recommend your daughter should be assessed. It opens doors for support and adjustments that would otherwise remain closed.

Having thought about this for a bit, and bearing in mind my previous comment...I do agree - a diagnosis would likely be beneficial for her, if only to reduce problems getting timely support should it become necessary later.

Maybe the first job is to slowly coach her as to the benefits of being diagnosed, and that there aren't really any negatives? In terms of your thought process for building a strategy, start with the reasons that you want to get her a diagnosis and go from there.

I suspect you're going to have to do a lot of build-up, though. I don't know if I can help, because I wasn't diagnosed until I was 45; all my thoughts on how my life might've been if I was diagnosed earlier (and born in a time when there was much less stigma around autism) are entirely hypothetical.

I think a diagnosis could be helpful in the future, but I think you need to persuade her.

Where I live a diagnosis takes years, so it's better to be on that list.

A diagnosis would probably be useful in negotiating adjustments come GCSE, A Level and university. That said, you don't technically need a diagnosis to get an EHCP.

What do you want from a diagnosis for her? I don't think a diagnosis necessarily brings the help or support people want for their children.

Can you start working on improving your knowledge around autism in girls, in order to work with her on support strategies. Things like being aware of her sensory needs and working on a sensory diet to support these.

I’ve spent my whole life not knowing what on earth was wrong with me .it’s not a nice feeling.
my dc were diagnosed at age 4 and age 7
they thankfully will never just think they are stupid or don’t fit or why they do this that or the other ..they are secure in who they are ,
the waiting list is years long ,you may not even have the diagnosis before GCSE ,unless u went private
if your child had the symptoms of diabetes would you let her decide if she was going to the doctor or not
the school need to fill in the same forms as you for assessment,that might be the best place to start ,talk to the school ,see what they think