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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

  • My assessment is done online (Healios).
    I had 6 appointments online and more than 10 hours of interview.
    I did very well in school, I have a lot of knowledge on many topics except those of daily life that do not interest me. I speak a lot, a lot, people find me kind, pleasant, polite.
    In short, no one can see that I am autistic spraying. I was raised by a military family. Appearance is important. So I learned, in spite of myself, to create a social mask, to do like everyone else.
    My second wife invited me to take an assessment. For me, it was stupid because  I was absolutely not autistic. Different but not autistic.
    I didn’t have a GP, I enrolled in a local medical center and I met, as if by chance, a GP who was finishing his specialization on autism. He watched me, I spoke according to my social mask (it is natural). After 15 minutes, he told me if you’re not autistic, I’m not neuro-typical. But I thought, he must be wrong.
    During the online evaluation, I said to myself: "They will tell me that I am not autistic, because I am not autistic. For 53 years I will know".
    During the evaluation I met independently 3 different professionals, my wife also had interviews with them. In addition to the classic tests they did complementary tests and studied all my medical history (complex at home).
    All these professionals unanimously gave their verdict, I am deeply autistic Asperger and I now really need help, even though I survived, not without a certain price, for 53 years.

    I am a scientist. If you had the opinion of a professional, it would be better to have the opinion of a consortium of professionals. Otherwise, their diagnosis is certainly correct. Not all differences are systematically autistic cases. Moving to other behavioural assessments would be a possibility.

    Your description fits perfectly with what my wife experienced as a child. Yet she is not autistic, but she is different, she comes from a Siberian shaman family. She has great skills. she perceives the world differently, intrigues scientists and challenges medicine. But she is absolutely not autistic.

Reply

  • My assessment is done online (Healios).
    I had 6 appointments online and more than 10 hours of interview.
    I did very well in school, I have a lot of knowledge on many topics except those of daily life that do not interest me. I speak a lot, a lot, people find me kind, pleasant, polite.
    In short, no one can see that I am autistic spraying. I was raised by a military family. Appearance is important. So I learned, in spite of myself, to create a social mask, to do like everyone else.
    My second wife invited me to take an assessment. For me, it was stupid because  I was absolutely not autistic. Different but not autistic.
    I didn’t have a GP, I enrolled in a local medical center and I met, as if by chance, a GP who was finishing his specialization on autism. He watched me, I spoke according to my social mask (it is natural). After 15 minutes, he told me if you’re not autistic, I’m not neuro-typical. But I thought, he must be wrong.
    During the online evaluation, I said to myself: "They will tell me that I am not autistic, because I am not autistic. For 53 years I will know".
    During the evaluation I met independently 3 different professionals, my wife also had interviews with them. In addition to the classic tests they did complementary tests and studied all my medical history (complex at home).
    All these professionals unanimously gave their verdict, I am deeply autistic Asperger and I now really need help, even though I survived, not without a certain price, for 53 years.

    I am a scientist. If you had the opinion of a professional, it would be better to have the opinion of a consortium of professionals. Otherwise, their diagnosis is certainly correct. Not all differences are systematically autistic cases. Moving to other behavioural assessments would be a possibility.

    Your description fits perfectly with what my wife experienced as a child. Yet she is not autistic, but she is different, she comes from a Siberian shaman family. She has great skills. she perceives the world differently, intrigues scientists and challenges medicine. But she is absolutely not autistic.

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