“Now everyone wants to be something
A feeling so strong
But only one thing really matters
A place to belong
Don’t spend all your days in the shadows
You’re not on your own
But just keep on fighting
‘Cause you’ll never know you’ve got ’til it’s gone”
(This, I feel, is one of my more important posts. I have actually “met” [through the wonders of the internet] four ally moms who either have very recently or not at all claimed the diagnosis of autistic, even though it matches what they’re going through…this is to them, and others who haven’t self-diagnosed for some reason or another)
I was lucky enough to be diagnosed autistic at a very young age. This led to me getting the services (like Anova, the school for autistics that I went to) I needed to survive (flourish, even) in the world today. With the few memories that I have from my time before Anova, I know I’m not mincing words when I say that the only reason I’m alive today is because of the help I got because of my diagnosis.
But I’m a lucky one.
Thanks to a variety of factors, many people don’t pursue official diagnoses, especially adults. Even those who might pursue and might be autistic may end up not getting the official diagnosis, especially if you’re an adult and/or female (the latter is a big issue…1 in 271 [pretty sure, definitely over 200] women are diagnosed as autistic compared to the once 1-in-68…with statistics this messed up, something must be going on).
I have no problems with this, it’s important to do what works for you.
The problem I have is that very often the people who don’t pursue the official diagnosis with a doctor and all also don’t self-diagnose, even if they feel the label fits.
Sometimes the world is straight-up hell. Too many sounds, too many lights, and far, far too many people. While being buffeted with this insanity, you are also supposed to carry on conversations, keep eye contact, and just generally act “normal”. It is hard interacting with the world at large, especially when the way your mind works ends up isolating you naturally.
The joy of claiming your diagnosis is not being alone…we all know, in some form or another, what you’re going through. We know and accept each others’ weaknesses, because we have them ourselves. The rest of the world will often tell you you’re weird, strange, or “wrong” in some way, while we’ll see the difficulties you’re going through.
I hate the fact that people are feeling the need to go out on their own when their people are right here. I remember pre-Anova, trying and failing to be normal with nobody to turn to, nobody like myself. Now, thanks to knowing I’m autistic, I don’t feel alone, as I have quite a few people who I can turn to who will know what I’m feeling…
Leave the shadows and embrace who you are. We’re here for you..I asked a few autistic groups what they felt, and I got a few responses from self-diagnosed people on how they felt afterwards:
“1. Finding I was Autistic was a revelation. I had no idea why I was so different from others around me. I had never met other autistic adults. When I did I realised how much I had in common with them and it led me on a voyage of self discovery. It was literally like having a blindfold removed and seeing myself and the world around me with new eyes.
2. Having spent years trying to fit in, to be normal, I realised that I had allowed society to hold me back by putting a ball and chain of expectation on me. I have now learned to embrace my Autistic self.
3. I think being female contributed to my being overlooked. And my very strengths (eidetic memory, observation skills) contributed further. It meant for me getting diagnosis came later in life, much later. I self diagnosed when I was 47 but then sought formal diagnosis a year later (privately). I wanted formal diagnosis to rule out other possible diagnoses and because I felt formal diagnosis would help with credibility in the field I was/am working in.
4. I now help others get their diagnosis (where possible and if wanted) and help advocate for services and acceptance.”
“It gave me a sense of belonging. And a much wider sense of those around me, their own personality make up, it seemed to suddenly be like bright lights, lighting up all around, I don’t know why, but it became so easy to spot a fellow aspie. I think I had to know myself before I could do this, and that’s really what a few months of self realisation did, being in this group, listening and talking with people who were, well, just like me actually!! And to the NTs in the group, I found people who are accepting and understanding, and its helped me to find my place among the ‘strangers’ around me. It also made a huge difference for my officially diagnosed Autie daughter, because now I feel more connected, and somehow that has channelled into a more patient and accommodating approach to my parenting. The fact that I will never go for an official diagnosis, stems more from a dislike of so called ‘experts’ and wether they may or may not tick enough boxes on their forms to give me something which I know already, within the core of my soul. Diagnosis criterias will ebb and flow with the years, and so maybe will my own sensory reactions, my social interactions and my thought processes to everyday life. I’m happy just to have been given the chance to ‘be’ myself and understand things in a whole new light.”
“I never have been officially diagnosed, but I’ve read enough and taken enough self-evaluations to know that I am definitely on the spectrum. I’ve always known I didn’t quite fit, or my experiences didn’t match up with other people’s, so it’s comforting and validating to at least put a name to it.”