To ask for a review of autism diagnosis

[cheesyfriesandhormonalcries]

I am going to put my hard hat on here and so fire away but my daughter ( 11 ) has a diagnosis of autism but I really just can’t see it being the correct diagnosis especially now. She had a unique start in life and some significant medical trauma / isolation and complete shielding in Covid as well as big grieving period for a tragic loss in her in her life all by the time she was 7.
for background she didn’t leave the hospital from birth until she was a fully walking child that’s how long her stay was and I’m sure this would impact early development.

she was referred for 2 asd assements one when she was much younger which was by the speech and language team which never reached the ADOS assement because they said she didn’t meet the requirements for one at the community paed assement.
then years later her school wanted her re referred and I went with it
apart of the assement was obviously did she have development delays in early life ( speech etc ) which she did she talked and walked late but she didn’t have the same experience as other toddlers and was in a hospital cot 75 percent of time and in a ward 100 percent of the time requiring multiple surgeries and medical interventions.
her seconds referral ended in a diagnosis which surprised me.
I know it’s a spectrum and I’m aware girls show differently but apart from some mild shyness I don’t see it !

she has speech delay, fine motor delay etc yes but socially and behaviour wise she has never shown any real traits ever at home. She has strong friendship groups although is on the shy side, I would say she is very passive. Other than those 2 things she excels in life now at pretty much everything.
communicates, shows correct emotions, and has never once required regulation techniques or sensory over load. Reads emotions of others well and has a Broad range of interests now. she handles changes in routine well.

she has got a diagnosis of dyspraxia which I 100 percent agree with.

it’s not that I care if she is autistic it’s just it’s on her medical records and school reports etc

Schools don't tend to be over proactive when it comes to ASD referrals! What were they seeing OP @cheesyfriesandhormonalcries that meant she ended up being referred ? WIthout knowing that, it is hard to say really.

Well the reason her first ASD assement was refused was due to her original schools questionnaire saying there was basically 0 issues.
she then moved schools for other reasons and the second school approached me with in maybe 6 months to express their concerns now it wasn’t needed for funding etc as she already had a full time 1-1 for other reasons.
I don’t think I have ever understood the issues. She won’t go in to the school hall for example - as it’s too noisy.
she is a stickler for the rules / never puts a foot out of line - as in 6 years and she has never even had to be spoken to once.
she struggled originally with initiating friendships but was good at maintaining them when they were initiated.
has a few irrational fears
perfectionist

I was at an event about ASD and ADHD earlier in the week and the issue of early life trauma causing ASD or ASD-like symptoms was raised. Basically they said all the evidence is that autism is something you are born with and cannot be acquired, but that there are similarities in the symptoms acquired from early life trauma.

Your daughter is not at a disadvantage from having this diagnosis, in fact this will potentially give her access to support that would otherwise be unavailable to her. Autism is much better recognised than trauma symptoms. If the symptoms are similar, the appropriate support will also be similar.

My advice would be to not get so caught up on this label. Right now it may give you access to useful support. In the future it may turn out that the correct diagnosis is different to the one she currently has. She’s still young and her brain is still developing. Just support the symptoms you see, whatever the cause, and keep an open mind. A diagnosis of autism is not a bad thing.

Girls (in particular) are under diagnosed for the exact reasons you mentioned. However, the struggles they're facing may appear more obviously during teen years when the social dynamics, pressures of school etc are harder to cope with.
This is my own personal experience and that of several friends as well as what's been shared with me as a teacher.
A diagnosis is really just a piece of paper, a starting point for how to help. They say that if you've met one autistic person, then you've met one autistic person. Ie they're all different and need slightly different support. Having it highlighted is helpful for her schooling going forwards.

I don't think it's unreasonable to be cautious in the circumstances. What I will say though is being very passive is how one of my asd children present and their asd has become more obvious as they've got older. When younger it was only obvious to us due to their sensory challenges but no one else could see it as a lot was masked.

would she get the same support without the diagnosis? I know support shouldn't be based on this but having one does seem to make people take any needs more seriously. Do you have anything in mind you think it is instead that you could ask to be looked into more before making any firm decisions?

I also wonder if it's worth waiting until your dd is older so she can make a decision around this herself but either way could have an impact i suppose

That does all sound very asd like