cat303 wrote:
...Autism should only be diagnosed after many in depth interviews and I know there's controversy about it (I personally was against it at first and it turned out to be the thing that sealed my diagnosis) but interviews with parents/old friends etc should also be used (I think it was Luciano et al. who did a recent study of misdiagnosis of autism and found that not having good enough history was key in misdiagnosis).
Cat303, glad to have your input. An experienced evaluator is needed for interviews also.
WARNING: soapbox (sorry, OP, I know this is tangential to your concern, but maybe you'll relate to something in this)
My mom is undiagnosed ASD (as was her mother) and her response is that I was completely normal - because I was very similar to her (and her mother). My mom was always on the outside, so was I: normal. She always was absorbed in one subject and flustered (or avoidant) otherwise, so was I: normal. She would get upset by small sounds and smell, so did I: normal. So if she was asked if I had any "unusual" focus, sensitivity and social ways, my mom would say "nope, nothing unusual, all completely normal [to her]."
Unfortunately even though I was (newly) diagnosed ASD, I also did not report "well" for my daughter (as an NT, it was prefect for an ASD). I was asked about bedtime routines and said we didn't have any. They were looking for my daughter's rigidity I think, but instead my answer reflected my own rigidity. My brain was on fire with my frustration that b/c of my NT son and husband I couldn't get us to bed at the same time every night, that it was always varying by 30 minutes which drove my daughter and I
nuts. If I had been gently directed to focus on my daughter instead of my general alarm, I would have said that we'd very much needed a routine but were having difficulty establishing one and that in the meantime my daughter always had to sit on my left side, always had to read exactly 3 books, etc. But all that came out was an alarmed "we have no routine!! !! !! !" The interviewer didn't ask me to clarify.
And I suspect the mother interview is given more "weight" b/c a mother is mostly (not always) the predominant caretaker, but what if the mother has ASD? The reporting needs to consider that and BOSA also. Of course my daughter related relatively well to me in the BOSA, we're both Autistic!! !! (but by testing standards relating well would imply she was NT b/c it's based on "problematic" NT-ASD interactions, so a smoother interaction implies like-for-like really but it assumes the "like" is NT, but it wasn't in my case --- of course my daughter shows interest in me, I have instructed her in reciprocal interactions since she was little - this is a script she's practiced). Feeling let down by the current medical practice. Navigating parenting my ASD-like daughter by myself... the parental support groups don't have ASD mothers with ASD daughters, heck I couldn't even get my daughter diagnosed correctly (yet).
30 Aug 2021, 8:48 am
