Autism assessment

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
  • Hi, sorry you've not had the result you wanted and good luck for the post assessment interview. Can I ask why you want the diagnosis? What do you hope will change as a result? If you could articulate this to the person you see for the interview it might help them to change their mind. Fingers crossed! P.S. I am writing with very little experience of this sort of thing and very new to the world of ASD (bar living with my son for the past 9yrs) but it just struck me that I'm not sure what you hope to achieve from what you wrote above and if you can explain it to them you may be more likely to persuade them, if that makes sense.

  • Hi

    Thanks for replying.

    I know it's not going to change anything in her immediate day to day life, but I feel it will help her as she gets older & has to go for college interviews /coping in college & or uni. Coping with job interviews & working, that kind of thing.

    And I just feel so frustrated with the "system" how 4 different professionals can all say they're certain she is, then after a 50min video assessment, they say no but almost ignore all the traits she does have! 

  • I can understand your frustration and your reasoning makes sense. My son has just been diagnosed aged 9 and to be honest as he is high functioning I wasn't expecting them to diagnose him. I had him assessed at 18 months based on my own observations, and again aged 4 when his preschool suggested I ask the GP for a referral - both times they said insufficient evidence of ASD. However, 16 months ago his current school suggested he be referred again and this time he got the diagnosis and although I wasn't expecting it, or especially wanting it, I now feel relieved. I've started reading more about how to support children with Asperger's and reading a bit about the challenges ahead. It has made me really sit up and take action to ensure I support him as much as I can, and that we access everything out there to allow him to thrive.

    I think you should stress the reasons why you feel the diagnosis will help your daughter and your concerns about the consequences of not having it. Really hope they listen to you.

Reply
  • I can understand your frustration and your reasoning makes sense. My son has just been diagnosed aged 9 and to be honest as he is high functioning I wasn't expecting them to diagnose him. I had him assessed at 18 months based on my own observations, and again aged 4 when his preschool suggested I ask the GP for a referral - both times they said insufficient evidence of ASD. However, 16 months ago his current school suggested he be referred again and this time he got the diagnosis and although I wasn't expecting it, or especially wanting it, I now feel relieved. I've started reading more about how to support children with Asperger's and reading a bit about the challenges ahead. It has made me really sit up and take action to ensure I support him as much as I can, and that we access everything out there to allow him to thrive.

    I think you should stress the reasons why you feel the diagnosis will help your daughter and your concerns about the consequences of not having it. Really hope they listen to you.

Children
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