Sorry you’re going through this, it sounds absolutely horrific. My dd masked, and then became super organised when she stopped eating. After being diagnosed anorexic and starting the refeeding, her ASD traits came from ‘nowhere’. She was 13 and suddenly couldn’t tolerate clothes, was stimming, clawing at herself. She couldn’t cope with school and had two years of hardly going, changes to two new settings to see if they could help as she wanted to go to school, just couldn’t cope with the thought of it. She didn’t hit burn out as you describe, but did lose all ability to leave her bed. Her skin was sallow, I would sit her up in bed to feed her. She became unable to walk and had seizures, tics, everything from nowhere.
She is now 16 and attends part time school. We recognise her need to rest. She is changed from pre-diagnosis, the girl who did everything, excelled at school and did a history of after school activities. That girl was only possible through masking and not eating. The girl we have now is real and true.
Help wise, she has psycho therapy once a week - this took around a year of waiting, she has it through the eating disorders team who kept us even though the anorexia was short lived. She is medicated by a psychiatrist who she sees rarely - she had sertraline, fluoxetine and is about to try another SSRI. The drugs have been life changing. She has stopped self harming and now has sufficient help with her anxiety that she can ignore some of her sensory issues. She has managed to go to the cinema for example. We have a social worker and she attends an autism club with a carer. She has an EHCP which has got her into specialist provision.
When we went through the ASD diagnosis we were shown that the early years of ‘no symptoms’ actually had them everywhere. She was an easy baby, self settled as a newborn and rarely cried. We now know she can’t recognise her emotions very well. She ‘played normally’ as a child, by setting up train lay outs, jigsaws, setting up the doll house. We played in this way too, so it all seemed normal. None of us did make believe, the dolls weren’t alive, when we tried a teddy bears pic Nic we sat teddies around and ate tiny biscuits. She chose her clothes at an early age from age 2 - I now suspect she was choosing comfy stuff. We always struggled with shoes - we thought becaus of her wide foot. Again I suspect this was a sensory issue - plenty of times the attendant would say the shoe fit by my daughter disagreed.
My child seemed so mature at primary school, seemed to really understand socialisation. Actually she couldn’t understand the normal playground antics so that was her ‘rising above’ and her strong sense of justice meant that she stood up for people so they gravitated towards her. She would routinely describe having no friends when the opposite would be apparent - this is because she had no skills to judge this. I taught her to share and other social concepts when she was 2. I thought she loved change as we used to do surprises that she loved. But actually the diagnostician helped us understand that she knew that if we were going on a ‘surprise’ then it would be a child oriented activity that she would enjoy. We are her trusted world so she will cope with a lot of what we would introduce. For other areas we would always set routines and plans so there wasn’t a grey area for her to be confronted with. Once playdates stopped being so prescribed - a friend comes, we bake, they chat for a little bit, dinner and a movie, home at a set time, she stopped being able to cope with them. She manages now by literally setting them as a play date - she will arrange to meet a friend for a prescribed timeframe to do a prescribed activity.
We are all now diagnosed with ASD/ADHD and my life makes a lot more sense in this context. I share this in case on reflection there were signs in early childhood? If there really weren’t, I agree with others. You can’t mask in early years and I am amazed they diagnosed without this evidence as trauma presentation is nearly identical to autism, the only difference is that autism will have signs in those early years. You have been given fab advice on here; I really recommend calling social services today and request an assessment, saying that you are really struggling. They can then help you with everything you need to do next from DLA to educational provision. My daughter qualified for middle rate care which I was amazed by, and saddened. It makes a huge difference and helps us with the debt we now have from so many months of missed/reduced work. My daughter also had home tutors for a while, still has them now as she is very part time at school and has years to catch up on. Sounds like your daughter isn’t ready for this yet, but you should request S19 educational provision for when she is - this can vary from tutors at home to tutor in a centre, or online classes. It takes a while to set up.
It sounds like PANS PANDAS is also worth a shout to look into, but if she does have this the recovery won’t be swift hence it is important that you sort entitlements. Most importantly, look after yourself.