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Autism assessment

NAS73459

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! 

Parents

  • UPDATE

    I had a telephone post assessment appointment last week & explained everything to them, that we felt they were overlooking all her traits, just because she was "sociable" in the assessment & that she gets on well at school. I also said how I thought she would benefit in the future with a diagnosis. 

    She said she would speak to the autism practitioner again who took the assessment & pass on all my concerns.

    She called me back yesterday & they have said they think it's social anxiety!!!!

    I'm so frustrated I could scream!

    She has been showing all the signs since she was 18months old. How can they say an 18month old has social anxiety! She said if she had been assessed years ago she would have probably been diagnosed, but today she won't because she was sociable!! She has learnt how to be sociable - she's had to, to cope!

    Where do I go from here? I've asked to speak to the practioner myself & even asked for a second opinion, I just feel like they're overlooking all of her main issues & just concentrating on that 1 aspect. She's not sociable in everyday life, she's very awkward.

    Any advice would be greatly appreciated. 

Reply

  • UPDATE

    I had a telephone post assessment appointment last week & explained everything to them, that we felt they were overlooking all her traits, just because she was "sociable" in the assessment & that she gets on well at school. I also said how I thought she would benefit in the future with a diagnosis. 

    She said she would speak to the autism practitioner again who took the assessment & pass on all my concerns.

    She called me back yesterday & they have said they think it's social anxiety!!!!

    I'm so frustrated I could scream!

    She has been showing all the signs since she was 18months old. How can they say an 18month old has social anxiety! She said if she had been assessed years ago she would have probably been diagnosed, but today she won't because she was sociable!! She has learnt how to be sociable - she's had to, to cope!

    Where do I go from here? I've asked to speak to the practioner myself & even asked for a second opinion, I just feel like they're overlooking all of her main issues & just concentrating on that 1 aspect. She's not sociable in everyday life, she's very awkward.

    Any advice would be greatly appreciated. 

Children
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