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Worried about ASD diagnosis

LimaMikeSquared

Hi All

I am being assessed for autism. I had to get my parents to fill in a questionnaire about my childhood, which meant telling them about the suspected ASD. I was met with the expected "but you were so intelligent normal child" which I also received after my dyslexia diagnosis. 

I have found it unsettling and I am now unsure whether it is all in my head or whether it is their own lack of understanding about it or what neurotypical is - there are many members of my family where i can see traits of dyslexia, dyspraxia, OCD and even autism.

They filled out the childhood questionnaire but many of the answer they gave don't reflect a typical ASD behaviours (the questions where for between 4-10years). I am unsure as this is whether the questionnaire was based around the behaviours which are typically observed in boys or whether the chin up carry on/ just ignore it and get on with it and heavily instilled manners have effected how I was in childhood in terms of behaviours being evident - whether through masking or just giving up on saying anything about what was bothering me (still an issue today). Or whether it is a form of my parents denial, that they might have missed something in me but not my brother (I am the oldest of the both of us)

There are things they say I did/didn't do that I remember differently, I don't know if this is just because I didn't say anything. The questionnaire didn't really ask things about the behaviours I have read about in things written by women with a late ASD diagnosis which I identify with, nor: if I did puzzles for hours happily on my own in my room, or that I was prone to bouts of "daydreaming" (which I am sure was a shutdown - I still have them now, frequently), or that I had "friends" in school, but who never came round to visit and where also on the outskirts of social circles. I had read that girls are much better at automatically masking it during the school years but struggle later in life as things get more and more on top of them and are out of the rigid routine. 

I suppose I am worried that it is all in my head and that I'll be going to a privately paid assessment for nothing. I say worry - its more like being so terrified at that outcome it makes me freeze as otherwise I don't know what else is wrong with me or why I am so different and out of place everywhere. 

Do I just give up on it now? 

Julie

Parents

  • I wouldn't place to much emphasis on your parents take on things, for many of the reasons others have mentioned above (I too had my diagnosis with no input from any of my family re. my childhood, the assessor was happy to have my take on those years.) but also from what you said about so many of your family members showing traits of AS.

    Since my diagnosis I've wondered if my children show any traits. I can't remember anything about them as children being 'odd' but then, seeing as I obviously had un-diagnosed AS back then too, how would I have identified atypical childhood behaviours? IF my children did show signs of AS, those traits would naturally have appeared perfectly 'normal' to me. Your parents could be in a similar position, either because your childhood traits were familiar to themselves or because they were familiar from other un-diagnosed family members.

    You could mention to your assessor that your memories of things don't match those of your parents too.    

Reply

  • I wouldn't place to much emphasis on your parents take on things, for many of the reasons others have mentioned above (I too had my diagnosis with no input from any of my family re. my childhood, the assessor was happy to have my take on those years.) but also from what you said about so many of your family members showing traits of AS.

    Since my diagnosis I've wondered if my children show any traits. I can't remember anything about them as children being 'odd' but then, seeing as I obviously had un-diagnosed AS back then too, how would I have identified atypical childhood behaviours? IF my children did show signs of AS, those traits would naturally have appeared perfectly 'normal' to me. Your parents could be in a similar position, either because your childhood traits were familiar to themselves or because they were familiar from other un-diagnosed family members.

    You could mention to your assessor that your memories of things don't match those of your parents too.    

Children
  • in reply to Endymion

    Thank you for the reply. I was planning on discussing it and writing down the childhood memories of how I was. I find memory recall difficult when I am under stress trying to remember everything. No-one apart from my brother have been diagnosed with ADHD/ASD/DCD but I can see some of the behaviours/symptoms up both lines of my family.