Does a diagnosis help?

[RobinBobbing]

Hello,

I’m pretty sure my 8 year old is on the spectrum. I’ll describe her behaviour below but my question really is, would it help her to get a diagnosis? If it’s something she wants to explore when she’s older I will support her but my current thinking is that she needs to learn to navigate the world in her own way and I’m not sure a diagnosis would help. Am I doing her a disservice? Does bringing a child up knowing they are masking wrong?

Also, I think help should be available to families that are struggling and not diluted by those who can mostly navigate the mainstream world. I have a family member that is more severely autistic. He is non verbal (age 10), the parents struggle with violent meltdowns. They need, and luckily now get, help, and he’s in specialist school - there is no way he could be in mainstream. Those are the families that I feel should be getting help, not ones that are able to cope (albeit with a few adaptations).

Her characteristics: always been hypersensitive about clothes (remove all labels etc. will categorically not wear a tie even though it’s part of her uniform). Doesn’t cope well with anything new - a bit obsessively rigid about rules and right or wrong. Gets overstimulated - eg we recently took her into London. Stupidly I forgot her ear defenders. She went on the tube but was really uncomfortable- just stuck to me, looked terrified, covering her ears and eyes shut. Gets obsessed with knowing what will happen if she’s doing something new. She regularly gets upset about things and won’t talk about it - she goes to a quiet room and under a blanket (lots of time). She’s bright, very bright according to teachers but she’s not good with relationships- she never seems to have particularly close friends and I’ve had to teach her expected behaviour that my other daughter just understood- eg during a play date you don’t just go off on your own (leaving friend on their own, it wasn’t an argument, just withdrawal from play).

We could afford to pay for a private assessment (though also very happy not to spend the money!) but if they said she is on the spectrum would it help her?

I have a non-verbal almost 4-year-old whose awaiting a diagnosis on the NHS; the support doesn't really exist in an accessible form for any autistic child regardless of their needs. So I would feel no guilt about fighting for what little there is even if your child is able to access mainstream education. Even just for them to have that knowledge about themselves to have that better understanding of how to work with their brain and that there's a reason for any difficulties they encounter.

You might want to repost this in SN Chat or SN Children to get more responses from posters who have personal experience. Those boards can be a bit slower, but the regular posters are very experienced and very helpful.

My understanding is that a diagnosis can help in a number of ones. One is simply having an understanding of why she does/thinks/feels things differently to the majority of children, why some things that seem trivial to them are so hard for her (and potentially vice versa). Another is that many who are okay and coping in the early and middle years of primary school can start to struggle near the end of primary, and especially at secondary. Puberty hits, social interactions gain more complexity, secondary school is much bigger and more complicated – and it all becomes too much.

You say she really struggled on the Tube, so a noisy, busy secondary school corridor might be quite challenging for her, and she'd be expected to navigate that without you multiple times a day five days a week. Help at school should be based on needs, but pragmatically, I think a diagnosis makes it easier to say 'these things are going to be difficult for her, let's get the support in place now, before she starts'.

My 4 year old is diagnosed with autism and whilst she was waiting for a diagnosis I was invited to workshops and zoom calls for parents who were waiting for a diagnosis for support really and to help you manage anything challenging for you and for her , just support really, as a diagnosis could take years or months just never know depending on your area. If she seems to struggle in school it could help her massively in school as your child could have a EHCP plan (Education, health and care plan) towards the end of a diagnosis which your daughter and you receive support from that up until they are 25 if your child has a significant and long term special educational need.

Sorry, I realise I didn’t reply! Your posts have given me food for thought. Hmm maybe I should see about an assessment. Urgh, I guess it’s just it can’t be ‘undone’, she already thinks of herself as a bit different’ and I say that’s great but she doesn’t really like it, so I’m cautious about adding to her feeling of being ‘different’

If she gets a diagnosis, no, it can't be 'undone' (at least not generally, not sure if it's legally impossible), but it does remain her private medical information. There are a few situations where she would have to disclose it (applying to join the armed forces is one, I think), but for the most part, she doesn't have to tell anyone she doesn't want to.

The feeling a bit different one is hard. On the one hand, you might worry that the diagnosis will make her feel more different, and if she's not very happy about it, of course you don't want to make it worse.

On the other, you can find plenty of people who found diagnosis a relief, because they already knew they were different, but now they knew why. It helped explain why certain things were hard for them, and sometimes helped them find a community of people who were more like them, so they had that space where they did not stand out as different.

Waiting lists are long, though. You could see about getting her on the list, and you'd probably have a year or two to think about the pluses and minuses and also just see how things go.

I suspected my daughter to be autistic at around 15months old. Diagnosed at 5 years, it's a long long process.
Shes 6 now, My daughter is what many would call high functioning, she is intelligent in terms of memory, can read, write, talk well, express herself, very funny, social etc.
However she attends a specialist school, she cannot cope with busy environments, loud noises, lack of routine, has extreme emotions, anxiety, list goes on. She gets set into rigid patterns sequences that must be repeated.

You can't ever really tell unless you live with someone how much being autistic effects them day to day, as an outsider would assume she could navigate mainstream but in reality no way.

Masking in autistic girls is very high and can lead to mental health struggles.

Diagnosis would only really confirm or not if she is, nothing huge changed for us after diagnosis, I've been on courses thats it. What really matters is that you understand her and how autism(if she is)may effect her, and when the time is right she can start to understand that too.