Benefits of diagnosis for a girl with ASD?

[NotJimbo]

My DD is in her last year of primary school, and for years I have had a hunch she is on the autistic spectrum. As she has got older some of her issues have improved yet some seem to have got worse, e.g. sensory type things e.g. aversion to noise has improved, but I'd say she now has higher anxiety than before, and has more frequent melt-downs.

I avoided doing anything for all this time as I wasn't convinced there were any benefits in getting a diagnosis. At school she holds it together pretty well, and I don't expect there will be any kind of extra support she could be offered there, but after some recent worsening behaviour I now worry there may be problems to come with transition to secondary school, and puberty etc.

So against that back-drop, can you please share your experiences of getting a diagnosis, positive and negative. I don't even know how to go about it, I suppose the GP would be a start, and how long should I expect it to take? I could perhaps pay to go private if necessary to avoid waiting, as we're half way through last primary yr so maybe now is a good time to acknowledge this.

Sadly my son didn't get his diagnosis before transition to seniors, it failed badly and he's not been to school since September. The diagnosis itself doesn't get extra help on its own but helps make the case. Transition to seniors and puberty, especially in girls, can cause huge emotional issues that can be harder for a child on the spectrum. If in doubt get the referral to check asap, the waiting times for assessment can be very long!

Well I have a boy who is age 7 so not your exact scenario. My son knows now he has autism and it's great being able now to discuss with him why he has sensory issues or problems controlling his emotions etc. I would much prefer he has a full understanding of himself rather than wondering why he is different to others. We can openly talk about what we can do to manage his issues. His behaviour makes senses to him now.

Your daughter could benefit from help from an occupational therapist to help her with sensory issues etc.

I strongly believe I have asd. Two dds of mine have asd. I struggled horrifically through my teenage years and had lots of mental health issues. I thought I was crazy and it made me very very depressed because I compared myself to NT people and felt like I was failing. If I'd known I was just different I might not have harmed myself so badly and experienced a lot of misery.

I'm toying with getting a diagnosis now but I'm not sure how I'd let my mask go.

Thanks for your responses, it's food for thought, I will probably go ahead and pursue an assessment.

My main concern with diagnosis is it would make no real difference, so it's helpful to hear others views on this. Some of the benefits mentioned seem real and tangible, so that's already helpful.

Another thought - presumably I don't bring DD along to the GP appt where I request the referral? It could be awkward having that discussion in front of her, and I can't think of any positive ways to frame it, to explain her issues to a GP without sounding like I'm highlighting how weird/wrong/difficult she is? Would the GP need her to be there? I'm realising if this request goes anywhere I'll have to explain to DD what it's all about. She has enough self awareness that she realises she has difficulty in some areas so I'm sure I can find a way... thinking out loud here. In any case it seems to take 6 wks to get a GP appt here so that will give me time to work it out.

My DS was diagnosed in yr 3, he's now in year 8, it has made a huge difference, partly in his own understanding of himself but mainly it has empowered me to reach out for extra support for him, not just in school but in extra-curricular activities too. Our referral was done through the school nurse.

One of my DDs is diagnosed - and one huge benefit for her is understanding that she thinks differently and why. This is helping her get through her teenage years as she is very analytical and having a logical reason why "other people can be so different/illogical" helps.

Also having a diagnosis means that you can tell school, and they can be prepared if difficulties arise.

Bear in mind also that once she hits the teenage years it may get harder to persuade her to see a doctor or other specialist if she doesn't want to, at the moment you've got a window of opportunity while you are more in charge of such things.

UPDATE - So via the GP I got a referral for DD to be assessed, and paid for private assessment (£800) and following various assessment stages DD now has a diagnosis of HFA.

The hardest part was the GP appointment, as the GP was really quite obstructive. Luckily I had made good notes before the appointment, and was able to articulate my case. DD wouldn't have been referred unless we were willing to pay privately.

So the diagnosis is not a surprise really, and I feel neither up nor down about this, my latest dilemma is how far we share this information. AFAIK DD hasn't told anyone, and neither have I. I'm still getting used to all the lingo, but in terms of spectrum, it seems DD met the criteria for a diagnosis of autism, not just ASD/Aspergers, but because she is doing ok academically she gets the 'HF' label, so she's more autistic than I had realised, it turns out she had been masking it really well.

So to the posters above thanks for your support, I had been mulling this over for years, and I'm glad on balance we pursued this. The lead psychologist involved has given us some pretty good advice on what to do from here, and advised us we should contact the SENCO at primary school and also the secondary she's due to join in Sept.

It would be nice to talk to someone in real life about this, but I'm mindful of DD's privacy, also family are going through a rough patch at the moment, with bereavement and worse, so I may bide my time, before fully disclosing to anyone, apart from maybe school as it seems there's practical support they can be putting in place already.

If you look on YouTube there are quite a few young and middle aged women who have been diagnosed often not until either MH issues became problematic or their own kids were diagnosed. All the videos I've seen say they wish they had known earlier, just to have that understanding of self (even leaving aside any help that may or may not be available), so I'm sure you've done the right thing.

Your DD may find that quite reassuring, to know she isn't alone? Of course it may also raise some "too adult" issues that you don't want to breach yet, but maybe you could look at a few and see if you can find any that might chime with your daughter? I quite like Invisible i, so that might be a starting point (though she also has some other medical issues).

Anyway, just a thought. My DD is younger and doesn't have a dx yet but I've found the videos really useful in understanding how ASD can manifest itself in girls and also just how varied a condition it is.

This is another one I like. It may be too old for your DD but take a look and see!

Hi OP, congrats on taking the positive steps that resulted in your dd's diagnosis. School seem to have a handle on it so that's another huge plus for both of you

This may help other people understand a little about autism when you're ready to share with whoever you choose to.
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

Do grow a rhino-hide, you wouldn't believe some of the things people say from a position of ignorance and others who constantly minimise, often close family, will say you're completely wrong, she can't have autism because [insert a shedload of ludicrous assumptions]

MN's SN boards are in my opinion the best I've found online, the posters are so knowledgeable and helpful that whatever blip you may encounter, someone here will have been there tried this and that, which will in turn help other people who read about it.

For now, take your time coming to terms with your dd's new dx and remember, she's not changed, she's the same girl, but now she has the opportunity of help if she needs it.

Thanks again, the links and YouTube are helpful cheers x

Could I ask who you went to? We are wondering if to go to daphne keen it's sonhard to know as I'm not sure it is asd with Dd