I know I will never get a diagnosis of my NVLD/ASD(?) . I bought the issue up with my then care co-ordinator about 8 years ago and she did set me up with an extra appointment with the pdoc. Unfortunately it was a disaster. He asked a few totally irrelevant questions before dismissing the issue.
I am too scared to press the issue because it was pressing for more help and support that got me labelled as “awkward,demanding and troublesome” and a “very dependent narcissist”.
Have heard the A word mentioned a few times but there have been no moves to act on it. Last time was last appointment with my nurse practitioner who mentioned it in relation to something I had said. It was quickly followed by " Not that there’s much we can do" before she changed the line of conversation.
When I finally had a professional start suggesting to me that I was on the spectrum (and eventually diagnosed me in that regard), it was a bit validating, like it gave me a boost in confidence that the online help materials I had been pursuing were the right direction. It also made some things about myself that had freaked me out a little bit, into things that were no longer a big deal. It was more like, “Yeah that is common for women on the spectrum,” and that was that. So I can definitely understand the importance for many people of having that validation.
That said, though, it didn’t change my treatment at all. My own coping mechanisms throughout my life had already proved sufficient enough, so it really was a case of “not much they could do” on a personal level. I do think there needs to be more awareness and early recognition, though. It’s something that I’m going to be very watchful about when I start working in the preschool setting, like being able to identify the difference between a temper tantrum and a meltdown and hopefully be able to get some kids the early life understanding that they need for parents who don’t know the difference through no fault of their own. I still have some vivid memories from my childhood of freaking the hell out over things like clothing tags or the seams of my socks not being straight, and the adults in my life thought I was just of a bad temperament or crazy.
I feel like when you have a psychotic disorder people just tend to lump everything weird you experience in as part of the psychosis. This is stupid for me as I have had my psychotic symptoms since forever and know when new things pop up I had never experienced before that are not likely the psychosis.