Does anybody here feel like they actually understand what it means to be autistic?

I was diagnosed a little over 20 years ago. I've spent pretty much my whole life trying to figure out what being autistic actually means. I still can't really define it even for my own sake. I talked a little to an American autistic person today. It was a bizarre experience, because they seemed to really understand their own condition. For me, autism has always been treated like an utter enigma even to professionals. I believe I am autistic, and I've been formally diagnosed. But I couldn't begin to explain what that means, or how it affects my life. I just know that I don't cope with stress well at all, and prefer living in a bubble to having varied life experiences.

I was asked what kind of autist I was, as if that's something I could possibly know. I feel like I've been living in a fog, and am only now learning that it might not be because autism is inherently vague and mysterious, but because I was never properly educated on what my own condition is. I'm realising that at 32 years of age, I don't understand the first thing about myself. And that maybe that's not the universal experience for autists that I thought it was.

Parents
  • I have no idea what it means, I am struggling to understand what it means to me. Perhaps it’s nothing other than understanding myself better but that takes time. The rainbow of the spectrum doesn’t make it easy to define yourself as everyone will have different personalities, varied life experiences and traits of the syndrome. I am not sure if black and white thinking makes it more difficult to comprehend, you may struggle to settle on a comfortable position in life without more clarity. This leads me more and more to think a diagnosis isn’t always enough and help should be available after the assessment. 

Reply
  • I have no idea what it means, I am struggling to understand what it means to me. Perhaps it’s nothing other than understanding myself better but that takes time. The rainbow of the spectrum doesn’t make it easy to define yourself as everyone will have different personalities, varied life experiences and traits of the syndrome. I am not sure if black and white thinking makes it more difficult to comprehend, you may struggle to settle on a comfortable position in life without more clarity. This leads me more and more to think a diagnosis isn’t always enough and help should be available after the assessment. 

Children
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