Worried about ASD diagnosis

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

  • 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. 

  • Thank you for the reply. It is the one thing I feel that fits after reading experiences from adult women who had late diagnosis's. My parents aren't attending the appointment as they live abroad now, but my husband (we've been together nearly 10 years) is coming with me. 

    The only other thing that might fit if it's not ASD could be TBI, I did have a nasty hit to the head (wasn't hospitalised - long story) around 11 when things got more difficult (but also when I went to senior school and my friends made new friends and left me behind and I didn't make new friends, and social interactions got much harder to gauge). The ASD is much more likely though.

    I have spoken to the GPs about my head injury but they have always brushed it off and told me not to be paranoid and sent me back home. 

  • They are in their mid-late 50s and I am 26. I have sent the forms but they had little to elaborate on apart from "but all children have moments like that". I did however also send them a copy of my dyslexia diagnosis.

    I hadn't read it fully but I have now and she states that I had put in a lot of coping mechanisms without really realising I had, she also comments some of my low scores are surprising given how highly I scored on the puzzle type exercises, and that my processing speeds are very low so maybe that will help give a different insight. It is quite recent as it was done whilst I was at uni.

  • 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.    

  • For my assessment with an NHS psychiatrist, my mom sat in the room for some of it and was talking about how bright a child I was and how I learned to read so fast (before I was 3) and how I didn't have any problems as a toddler. She did say that I had problems making friends at school - I think at the time she assumed all my problems were due to the nasty divorce and custody battle my parents were in the middle of. All the time she kept downplaying everything, as though she was worried the psychiatrist would think I was weird or something.

    Anyway, I ended up with a diagnosis.

    If you are so terrified that you won't get a diagnosis, that indicates to me that you have thought about it a lot and have diagnosed yourself. When the psychiatrist told me about my diagnosis I came right out and said that if he had determined otherwise I would have told him he was wrong.

    Be confident in your own feelings and knowledge. You already know the answer, so if you don't get the diagnosis you expect, you can simply ask for a second opinion. Don't let it worry you at this point (I know that's easier said than done).

  • I would wait and see. Have you sent the forms back yet? how old are your parents? I was similar. I filled in the AQ50 and the EQ50 which I scored very highly on, but I am 52 and my mum is 79. I didn't get her to fill in the questions herself as she lives a distance away but I asked her over the phone. She did reply 'I can't remember' to many of them, but the ones she did answer I was bale to get her to elaborate on, or ask her more detailed questions. I sent them off and the letter back did say that the results show I would benefit from a formal diagnostic assessment. I guess with her being old they focussed more on the other 2 forms. don't give up.