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Diagnosis nightmare

maaya

Hi

I just had a private assessment in London which said whilst I scored highly on the ADOS, my mother completed the ADI-R and it came back below the cut off so they said my problems were more due to anxiety and depression not aspergers.  I hated the assessment as the psychiatrist didnt seem interested in what I had to say and consequently I didnt get to explain much about the things i find difficult.  More time was spent with my mother (who is 72) and my husband.  I find it hard to accept an assessment which heavily relies on retrospective information from someone who failed to see a lot of my issues as a child anyway and would always tell me to "forget about it" if an issue arose.

I am wondering if anyone else has experienced this problem?  Has anyone had a second assessment?  I am wondering what the value of this would be as I wouldnt want my mother involved.

I would be very grateful for your thoughts

maaya

Parents

  • Hi Maaya,

    I have had a similar problem but in reverse with my younger son, who at home quite clearly shows signs of ASD/Aspergers. We scored very highly on the interview part ie what I have seen him doing over t his 11 years, but "passed "the face to face 30 minute assesment. I know what I'm talking about as his older brother was only eventually diagnosed with Asperger's when his difficulties became more pronounced and public with depression and anxiety with the transition to senior school, 2 years ago.

    I can really understand your frustration especially as a lot of the information for the diagnosis is gathered from the parents. It was hard enough for me to remember accurately, my son is now 14 years, and they ask a lot of questions about infancy, so I really wonder about the reliability of your mother's recall many years later, especially if she doesn't want to accept the possibility of diagnosis. The other thing is that over 30% of people with ASD have concurrent "mental health " diagnoses eg anxiety and depression, resulting from their difficulty from ASD in fitting in socially etc.

    I have requested a second opinion, and would suggest you do the same, if you feel it would benefit you to have a definate diagnosis. Unfortunately our second opinion didn't turn out to be the broader face to face assesment with speech and language assesment etc, just repeating the 30 minute face to face ADOS he had passed last time. Guess what he passed again! I would suggest you get more info about where to get a second opinion from, one that will focus more on your current difficulties etc, rather than your mum's memory. Hope that helps, Serena

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  • Hi Maaya,

    I have had a similar problem but in reverse with my younger son, who at home quite clearly shows signs of ASD/Aspergers. We scored very highly on the interview part ie what I have seen him doing over t his 11 years, but "passed "the face to face 30 minute assesment. I know what I'm talking about as his older brother was only eventually diagnosed with Asperger's when his difficulties became more pronounced and public with depression and anxiety with the transition to senior school, 2 years ago.

    I can really understand your frustration especially as a lot of the information for the diagnosis is gathered from the parents. It was hard enough for me to remember accurately, my son is now 14 years, and they ask a lot of questions about infancy, so I really wonder about the reliability of your mother's recall many years later, especially if she doesn't want to accept the possibility of diagnosis. The other thing is that over 30% of people with ASD have concurrent "mental health " diagnoses eg anxiety and depression, resulting from their difficulty from ASD in fitting in socially etc.

    I have requested a second opinion, and would suggest you do the same, if you feel it would benefit you to have a definate diagnosis. Unfortunately our second opinion didn't turn out to be the broader face to face assesment with speech and language assesment etc, just repeating the 30 minute face to face ADOS he had passed last time. Guess what he passed again! I would suggest you get more info about where to get a second opinion from, one that will focus more on your current difficulties etc, rather than your mum's memory. Hope that helps, Serena

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