Child refusing ASD assessment

[WalKat]

Has anyone been in the position where their child did not want to be assessed for ASD (or ADHD?) We have been on the long NHS waiting list for a while and we are aware it won't be too long now, likely some time this year...

It's tricky because my daughter is still young (11) but at the same time is old enough to understand and have very strong opinions.

She could do with some help, but refuses anything offered (not that much has been offered!) If diagnosed (which is very likely) it would be "high functioning" autism as she just about copes in mainstream school and is very keen to be like everyone else.

She believes that "she doesn't want to be told she has mental issues" (her words, not mine) and I just don't understand apparently (which is probably true)

Just wondering if anyone else has been in this position with a child really point blank refusing, and how they handled it as I am struggling a bit with what's for the best.

Is she in secondary yet, or does that transition lie ahead?

I would try and take the pressure off in the short term, whilst reassuring her that she is perfect and doesn't have 'mental issues'. Have you found opportunities to indirectly reinforce neurodiversity as difference not deficit? Also worth finding indirect ways to talk about why institutions can be rubbish, and people who are neurodiverse sometimes need them to act differently (sub-text: diagnosis can help with understanding). Have you watched anything together which relates, or do you have any family points of reference?

A neurodiverse 11 year old would be unlikely to have the capacity to fully weigh the pros and cons of assessment. Perhaps have a chat with the assessment team and see what they suggest?

Perhaps there is a conversation about things she doesn't want to happen, that can be agreed with her in advance, to make the assessment more predictable and safer feeling?

Hi, thanks for your reply. Yeah she's in secondary and the transition has gone ok but I'm well aware that anything could tip the balance at this early stage.
As far as I'm aware it isn't the assessment itself she is concerned with but being labelled "autistic" and then being different. The reason help has been refused is because she doesn't want to stand out.
We have discussed what autism actually is, and that it may help explain why she struggles with certain things (and excels at others) but she is very rigid with her views. She thinks of other children she knows with it who present very differently to her and I think views it as very negative.
I will definitely speak to the neuro disability team once we hear from them again and see what they suggest.

Would attempting to change her view of what autism is, so that it is broader, help? I assume she has overheard peers talk about autistic children in her school and doesn’t wish to be lumped in with them. Maybe greater exposure to famous autistic ‘role models’ - Greta Thunberg, Guy Martin, Chris Packham etc, depending on what she’s into, might help. Or this:

https://www.bbc.co.uk/iplayer/episodes/p0f7q3rv/a-kind-of-spark

Two of the daughter characters in it are autistic and all three of the actors who play the three daughters are autistic in real life. The author of the book that the show was based on is also autistic.

This sounds familiar.

It's a tough age to be picked up for assessment and that question of autism and self-identity can be really difficult (my child, slightly older, has a similar reaction to some other autistic people and has started to reject the diagnosis). My DC does need quite a bit of help being understood and supported to develop social understanding and to find safe ways of coping with stressors. In theory this should not have required a diagnosis, and just been supported as a 'need', but in practice the diagnosis has been pivotal in getting the right support unlocked). I suspect and hope, as they get older, they will find this information more useful in terms of self-understanding and self-compassion.

Thanks. I saw a meme that described the diagnosis as like finding out your peers have their video game setting on "easy" and you've got your video game settings on "difficult" and that explains why you've been struggling slightly more than them to complete the video game. You'll still complete the game and be even prouder that you did....That's kind of how I've described the use of the assessment.

The help she needs is similar, mostly social and communication and the help she has been offered is for someone to come out and spend the day with her at school which she has outright refused so we had to politely decline despite us requesting the help in the first place (when she was younger and less... Stubborn).

I will look in to that TV show I had never heard of that, thankyou.
I predict I won't get anywhere in changing her mind about this. It may even result in no diagnosis for now (which is a shame after being on the wait list for so long) but I will certainly give all your advice a try.
Thankyou all.

Focusing on reframing DD’s thoughts about ASD is a good idea. You could also reassure DD that she will still be the same lovely girl she is now - although obvious to you but some DC think it will mean they won’t be them any more. Purple Ella, Tania Marshall and Sarah Hendricks are some good female resources to look at.

When you get to the top of the list I would speak to the service, like pp said, DD is unlikely to have capacity to make the decision herself.

You could also discuss that even if she is diagnosed with ASD - she doesn't have to tell anyone! My DD refused to discuss her diagnosis for quite a few years - until she got used to the idea herself and was comfortable with it herself. We negotiated and told her teachers as and when they needed to know. It was important for her to control the narrative - unless it was essential for someone to know. I am pretty sure most of her friends from school still are unaware of her diagnosis. And she is not the only one!

That's a good idea. I can imagine it's a lot to get your head around at any age so keeping it to herself til if and when she feels comfortable might help.

My daughter was like this at first but we did go to the first paediatrician appointment and the pead saw enough to then put her on the MDA waiting list.
She's now come around a bit and wants the assessment to hurry so she can prove she's just like everyone else 🤣
She's almost 10 with a pda profile so likes to think she's in control.

Haha that's one way of looking at it!
Yep my daughter has to be in control at all times too. Good luck with the assessment.

You too x