Advice? Probably have PDA, not Aspergers.

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Hey there everyone,

I recently discovered the condition PDA - Pathological Demand Avoidance. And, well... it fits. Like a glove, tailor made for me. Yet for years I've been under the impression that I had high functioning autism, likely aspergers.

As a child I had numerous councilors, speech therapy, private tutors etc. There has always been an unspoken understanding in my family that there was an "issue"... but my parents (read: mom) didn't want a formal diagnosis, so I never got the label officially. But the inevitable discussion we got from mental health professionals was something to the effect of: He seems to have autistic traits, but he doesn't present as typically autistic.

In my 20s, after life had chewed me up and spit me out numerous times, I began looking into the issues I had more and more. Eventually seeking professional help again, which ultimately led to a diagnosis of aspergers. I also found this site, a place I've come to when I've needed advice, solace, when simply bored or need to feel that there is a place for me in the world. But the more I got to understand autism, and aspergers... well, came to the conclusion that it was a close answer. It wasn't the right one, but it was close... very close.

And now, well... I think I've found that answer. PDA. But along with it are numerous difficulties. For one, I live in the US, and it isn't recognized here as even being a condition, so I'm not exactly sure if I should just be happy with the current diagnosis, or if I should do anything about it... I'm leaning towards just ignoring it. What difference would it make? Which brings me to the second difficulty... since it is such a poorly understood or even recognized condition, where would someone, an adult such as myself, even turn to for help or advice in managing the issues that go along with it? All the searches I've done turn up nothing in this stupid country I live in.

And finally, reading the description of PDA... that fateful morning almost two weeks ago, has sent me into an emotional rollercoaster. The only way to describe, the sensation I felt as I read about this condition was shock and recognition. It was like reading something written about me, from someone who actually knows me, knows me better than any person in life ever has. It was more than a little unnerving, and left me with a dizzying sense of being exposed.

I keep going between for the first time in my life actually feeling real hope for the future, that in knowing what is going on maybe, for the first time, there might actually be something I can do to improve.... to feeling overwhelmed with despair at how completely out of control I am of everything in my life. I lived in denial so long, I chose to believe I knew what I was doing and was in control, even despite insurmountable bodies of proof to the contrary. I feel like a passenger, I'm not really driving... and acknowledging that... scares the crap out of me.

I am lost now, more than ever, about what to do. I don't know where to turn for help. Facing the truth about how demand avoidant I am is nice, and has been an eye opening experience... but at the same time, I'm starting to realize just how significant and serious it is, just how deeply and profoundly it affects my life, every facet of my life.

But the most terrifying aspect of the past few weeks has been this: I can recognize now when something is triggering an avoidant response in me. I can see what I do, and know why I'm doing it... but I still cannot stop. I cannot for the life of me avoid being avoidant. (Yeah, I know how ridiculous that sounds) But no matter how hard I will it, ponder over it, or try to force myself to... inevitably I cannot stop avoiding whatever triggered the response. I feel powerless... and the initial hope that I felt for learning about this whole thing is dissipating.

I need help, advice, something...

What made you think you have AS in the first place?

I thought I explained that. Sufficiently enough, I guess. But ok:

Required speech therapy in early childhood.
Had trouble in school in early childhood.
Was taken to see a host of mental health professionals in early childhood, signs indicated atypical autism.
Continued having same kinds of difficulties throughout adolescence and into early adulthood.
Began seeking help for difficulties on my own, sought professional guidance, diagnosed w/ aspergers.

But it wasn't quite the right fit. Close... autism explains some of my issues, certainly. But PDA explains all of them, clearly, concisely, and exactly. I suppose if you are of the mind that self-diagnosis isn't credible, then you might as well ignore my plea for help and just question me on my reasoning. But, that isn't exactly helpful, is it?

One way or another, whatever you want to call it, I have the issues described under the label of PDA. Whether or not I have PDA is of no consequence to me. I really couldn't care less if it was aspergers, autism, PDA, schizophrenia, agoraphobia, arachnophobia, or a hang nail. But I have all the listed issues of PDA and it is towards those issues that I need to find help for. I hoped to find help here, maybe I'm just out of luck and I just need to accept my fate.

I feel so helpless, I've cried myself to sleep a couple times over the past few weeks. I never cried like this before, even when bad stuff has happened in life... I don't have words to describe how much my world has been rocked by this...

And I don't know where to turn.