12 year old autistic daughter not herself any advice on how to react?

[Anothernightofnosleep]

My 12 year old has autism and adhd but she is pretty capable of most things, she normally gets on with things and is good general
communication skills etc. BUT she does not communicate feelings or problems well (im not sure how to describe it!).

yesterday she wasnt herself at all we eventually figured out she had earache. But she wont actually say she has earache - you can say fir example “how is your ear” and she will just shrug and look away. She wont seek out any help at all.

today she has been just sitting next to me on the couch and actually asked for a hug this is VERY unusual . We have asked about her ear and she shrugged but eventually said its “ not gone”. We managed to give her some calpol.

she has no temp, but is acting very off.

I am feeling really upset about this tbh! With our other kids we can just ask them and figure it out. But even though 12 year old is capable of brilliant conversations about other things she just cant seem to tell us whats wrong.

all my kids were ill with some sort of virus last two weeks APART from 12 year old so im assuming this is related but i have no real idea.

shes not a baby shes 12 years old and taller than me and i dont feel like i can just march her to the out of hours because she has what we think is earache but i really have no idea how to deal with this and my lack of ability to communicate with her is making me feel like a total failure as a mum.

how am i supposed to figure out what to do when she wont or cant tell me what is wrong?

any advice would be greatly appreciated!

I work in urgent care and wouldn't mind at all if you brought your daughter in. Explain as you have done here and any clinician will understand the need to exclude whatever they can

Is it just talking that's the issue? If so, could you use a picture (like an outline of a body) and ask her to point to the bits that feel bad?

I just wanted to say we have the same issue. I think because my sons senses are different, particularly interoception and proprioception combined with communication difficulties. We really struggle with accessing healthcare.

If it is earache, it could be making her feel dizzy too which would be hard to describe. Can she have sudafed and a steamy bath with a bit of olbus oil

I'm rubbish at yelling people I feel unwell or knowing when I'm not great. Can you ask her really specific questions to work out how bad it is? Paracetamol won't hurt however she will take it.

Thanks!
we have given her sone paracetamol and a warm cloth to put on her ear.

we have tried asking her to point to what the problem is but she just doesnt seem to actually know she just looks blankly at you!

She may not know herself which part of her hurts. The more ill she is the more difficult it will be for her to understand and communicate how she feels.

I agree. If she's feeling really shitty with that awful virus that's doing the rounds she probably feels rubbish all over and generally out of sorts.

I hope she feels better soon

Ask closed questions rather than open questions. Describing an ache or a pain is very subjective, and if it is still the same as before she's probably confused as to what you're expecting of her. I'd ask her directly "do you need paracetamol?" "has the pain increased from yesterday?" "how bad is it on a scale from 1-10?" etc. Or just take her to the doctors.

My autistic DD does not "feel" in the same way as NT children. When asked by the GP if her throat hurt, she said "I don't know". She struggles to explain internal feelings - whether that is sadness / happiness / pain. Interoception is tricky! It is easier to ask if something is not quite normal. We monitor external signs for illness - temp / oxygen levels / pulse using oximeters etc when she is not herself. Sleeping more or less than normal is also a sign things are not quite right. It is very difficult to explain this to others - even Drs don't really understand how this can manifest itself. The NAS have a "patient passport" that we use for hospital visits which can be quite helpful:
t www.autism.org.uk/advice-and-guidance/topics/physical-health/my-health-passport

Quite often it's not the feeling of pain or being unwell but the feeling of not being yourself that is the problem. One of mine is awful when unwell and usually non verbal so I understand it from both the autism person and the parent side!! I'm also hopeless at explaining what is sore or what kind of sore it is, but I have found doctors etc very very understanding when I have taken a child (or myself unable to explain) and said 'something isn't right'

*autistic person

We normally twig after about 3 days when DS has been completely out of sorts and angry.

I feel rotten for missing it every single time, but I still miss it. I think his body doesn't react typically to bugs either, I'm not even sure he gets fevers like I do.

We go OTT to reward any sort of communication of illness - special trips out for cough sweets, hot drinks, even the odd day off school. We have to call it so differently with him and I still feel we don't care for him adequately.

Interoception. My boy actually broke his leg and cried only briefly. Then trying to get him not to stand /walk on it while waiting for a cast was hell, he kept standing then crying but it was like he didnt link the broken leg /standing to what was upsetting him.
Has she had Occupational Therapy by someone trained in sensory integration? Its really improved my boys ability to tell us when something is wrong. He told me yesterday "i feel not christmas" while pointing to his throat. He was right...now on antibiotics for strep.
Highly recommend OT for SI.