Published on 12, July, 2020
Hi
My 13 year old daughter finally had her assessment 2 weeks ago for Autism.
We have been waiting for 3 yrs for this appointment, but have known things weren't right since she was 2 yrs old. We have been told by 4 professionals over the years (paediatrician, Ed Psych, clinical psych & gp) that if they could give the diagnosis, they would. She is what would've been classed as High functioning, has huge food issues, very sensitive to smells, ocd about things being clean & neat & in right place. Issues with clothing. Not very empathetic. Socially awkward, can come across as rude/ignorant. Can be very literal, struggles with sleep, conversations have to be about her or what she likes, hates change, has meltdowns, flaps hands quite often, very anxious & worries about everything.
She has always done well at school & they don't see any of this behaviour - she gets on and does her work, to the point of hardly talking to her friend. But if there is a problem in the school day, we certainly know about it when she gets home!
She has a few friends, but only 1 that she will see out of school.
Her assessment was done online due to Covid & even after all the telephone questionnaires I've done, the Ed psych & gps report, they said because she does well in school & was chatty in the assessment they can't give her an asd diagnosis!
I feel like they've just picked out these 2 little things & ignored EVERYTHING else.
I have a post assessment meeting on Wednesday & I want to say I disagree & that they saw the "performance" version of her - big smiles, lots of nodding in the right places kind of thing. She masks so well - to the point of mimicking how her friends speak. As soon as the video assessment was done she was back to her quirky self!
Will it make any difference? Are they likely to change their mind?
I feel like we've known ourselves since she was 2 & all these appointments & stress & worry have all been for nothing!
Please, if you have any advice on what I can or should say or where to go from here, I would truly appreciate it.
Thanks for reading this far!
I had a long phone call from the Autism Practitioner yesterday.
We spoke in lots more detail about the day to day struggles & all the traits I felt they had overlooked.
She said that the virtual assessment isn't always the best option for all children, especially girls, they are realising.
And she accepted that it was a "performance" they saw. She said she thinks they put too much focus on the fact that she appeared quite sociable & said she's not too proud to admit they may have got it wrong.
She's going to go go back through all the reports & take into account everything I told her yesterday & she said she thinks there will be a different outcome.
She highly praised me for not giving up on her & being the voice she needed.
I am so grateful that we finally feel like we are being listened to & my daughter will finally get some support, but also, I feel that it shouldn't have been like this.
She is also going to refer her to a dietician & OT too.
I will give a final update when they get back in touch next week.
Thankyou to everyone for all your comments & advice & making me see that my instincts were right.
X
Great news, please let us know what happens, fingers crossed for you and your daughter :)
Will do.
Thanks for the support!