Published on 12, July, 2020
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
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).
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.