Hi all,
My names Ellesha I have autism and I've got a lil girl called fae (5) with non diagnosed autism and other speculated conditions.
I'm struggling so badly at the moment with the NHS and getting her the help she needs and diagnoses, I'll go into why in a moment but please understand there will be mention of past trauma.
I was abducted at a young age (12) and suffered alot of violence and abuse i was forced to have my daughter fae at the age of 21 and she was then subject to the same violence up untill the age of 2 - I'm not going to go into grave detail as I don't want to upset anyone.
Fae has had significant trauma and was diagnosed with depression at the age of 2. I had noticed straight away that she was on the spectrum - she didn't walk properly untill the age of 3, only babled untill the age of 4, major social anxiety , meltdowns .. the list goes on ..
At the age of 2 when we got away I straight away started trying to get additional help for her through health visitors, trying to convince her nursery (they just said it was an age thing 
) etc
We was put with the family wellbeing team to go through different forms of skills like - sleep patterns, behaviour, parent workshops before any referrals were made I did everything they asked and finally they made the referral at the age of 3 for assessment.
By the age of 3 I decided to take her out of that nursery and put her in a private montessori that specialised in autistic children for the last year she had in early education. They were amazing and had there own SENCO team that helped teach her to talk, walk properly etc and made additional paperwork to confirm that there was somthing there that she needed assessment for - fae felt safe at this montessori and did not mask at all which was amazing to see her feel so comfortable.
Well.. we had the intial paediatrician appointment with the NHS at age 4 just before she started reception at infant school. Fae behaved as she generally would when not masking and the doctor prescribed circadin as she doesnt sleep (stays awake for 36hr and sleeps for 5)- babbling, figgiting, interrupting, not communicating with the doctor etc. The doctor reassured me that she was displaying key charectoristics and that further assessments needed doing. ( I'll attach the outcome as a picture).
Fae started school and absolutely hated it, we had meltdowns every single day for 5months. The paperwork the montessori had sent (for one plan, echp etc) to the school some how got 'lost' and fae has had no additional help to manage her emotions.
Fae is now 5 and in year 1 and we have had nothing but HELL from the school I've had to go through to the department of education because they kept not taking me seriously - as a result she had broke her ankle 3x since oct 2021 - a couple of weeks ago whilst in there care.
The school got so bad at not listening to me that fae has become reluctant to go to school and has become depressed again because she doesn't want to be there. We have had meltdowns galore to the point she's an emotional reck even at home in her safe space now and her education has regressed back to nursery age.
I feel terrible forcing her to go to school when it's making her so ill 
The problem is fae has learnt to mask extremely well, to the point she acts like all the other children inside school (or a public setting like it ), it's like as soon as she's in there an automatic switch flips and she's a different child to the one I have.. even at home time as we approach 10 footsteps out of the school gate that switch flips again and she back to normal fae with her babbling, stimming , regressive behaviour, no safety awareness - litterly a typical high functioning autistic lil girl.
I had tried explaining to the school and doctors that in a professional setting fae masks (imagine a super mask) but they just don't understand that because she has past extreme trauma that she developed to have a mask that is simply extreme camouflage and the point of if i comply I will get through the day quicker and un noticed. Its a major defense mechanism for kids and adults that have been through what we have. It's got to the point no fae is refusing to go into school and we now have to take her in the office and pick her up from - her behaviour has got extremely bad these past few months.
After making the complaint the school have finally started listening to me and today we had a TAF meeting with the school nurse to get additional things in place for her like CAHMS, Therapy, Incontinence referrals etc. But I have a major problem now as the school had sent the paediatrician a statement before her behaviour started happening at school saying that she is completely fine and in the light that nothing at all was wrong which they can clearly see now that they were infact wrong - The Assesments were done at there facility 4months ago and school about 2 months ago for the re assessment as they just didn't know if she is or isn't because of the mask.
Well after the TAF meeting I had a phone call consultation with her paediatrician for the results and it just went awfully...
The paediatrician stated that because the school had said there was nothing wrong with her that she doesn't have autism and will not be having any further assessments to see if it is another neurological disorder and just classed her whole behaviour on trauma. They litterly said we are discharging her and won't be seeing her again. We have waited 5 years for her to get the help she needs and because the school wrote that statement and her masking she now can't have ANY help on the NHS to find out what disorders she has. The worst part of this is, the paediatrician is the same paediatrician that reassured me that she would be getting all the help and right referrals she needed.
I am so lost right now that I don't have a clue what to do.. I can't afford private medical assessments and care and my poor babys struggling so badly mentally and has just been failed by the NHS
She was ment to be having so many assessment done - adhd, sensory processing disorder, etc and now all of its just been wiped away from her because of there strict rules on following ADOS as checkpots instead of guidelines.. I litterly pleaded for them to send someone out to see her in her home setting or at a park etc where she can be herself and not mask but they refused everything the school even asked me to ask them for a referral to a specialist to figure out what she may have that makes her ignore if she's in pain - fae broke her ankle 3 times at school and didn't react to any of the pain she was even running around with a clean break and didn't know she hurt it. She does acknowledge pain unless she actuly focuses on it which is extremely dangerous - the paediatrician even denied this referral.
Even her circadian sleep medication is being stopped because of this which is vital for her because if she doesn't she only sleeps every 36hrs give or take even on the medication she only sleeps for 6hrs but atleast it's every day
I just don't know what to do I really need help, I can't keep watching her get no help when she clearly needs it and the school can't apply for funding for her unless she has had her diagnoses
If anyone has any suggestions I would be so grateful 
Thank you.
