Finding direction

When I began learning about autism, I simply felt a huge relief to finally understand so much of my past, how it happened and why. In looking at events from the past, mostly unsuccessful interactions with other people, which caused emotional and sometimes physical pain, fear, and frustration, I was able to see how autism prevented me from understanding them, and them from understanding me. That was incredibly overwhelming, changing my understanding of everything in my world, and shifting it to a new perspective. I am still taking “baby steps” in my understanding and am continually amazed at how deeply entwined autism features are in all of my life, every part!

I have decided that for those of us who are older,( lets just draw an arbitrary line at chronological age 60), it is much more difficult. Many, if not most of us, have had no idea about our autism and have lived our lives as social outcasts, believing that what was happening to us was somehow our fault. We were faulty because we didn’t ‘get it’ and couldn’t do things that seemed to come so easily to others. We have been the nerds, the weirdos, the socially unacceptable geeks, the “odd ducks” and often also the brilliant and quirky genius sitting at the back of the room and coming up with solutions to problems that escape others. We have often been mocked, bullied, ostracized, belittled, and we carry the pain of not knowing why with us. Depression is frequently experienced by autistic folk, is it any wonder why? Anxiety seems almost universal among autistic people. If I kept doing things wrong, and being punished or criticized, but never knowing how to fix what I am told is wrong, is it any wonder I am ( we are) anxious? I am going to record my thoughts, feelings, and struggles as I go forward from self discovery of my autism, to trying to find somebody who will recognize the true diagnosis of the old lady with autism.

It would not matter to me if I stayed with self diagnosis, because I am quite satisfied with understanding within myself, and finally knowing the answer to almost every one of those “why” questions I had for most of my life. Here is the thing, though. I wish with all my heart that others who are still struggling and hurting deeply because they do not have the secret word: autism…. could be helped. In society today, one’s credibility depends on documentation… you must be certified by others… to drive a car, to act in many professions ( physician, lawyer, weather forecaster, engineer, ok- you get it) . If I want to be my best as an advocate for autistic people who are undiscovered and hurting needlessly, I can’t go out in the public sphere and say “Listen to me, I think I might have autism, and I want to tell you about it.” can I? You can imagine the response, can’t you? But if I say, ” I am autistic, I have been diagnosed as autistic, and I might be able to tell you a few things about it” I have that credibility… the socially acknowledged experts have pronounced me autistic. I have a certificate! No rolled eyes, no sighs, snickers, and shaking heads, it is there, proven; I have that paper that gives me credibility. My search for credibility has begun. This is an ongoing story.

3 thoughts on “Finding direction

  1. I’m not sure that being “officially” autistic, having a paper that says so is of too much value. Of course, that depends on how you plan to go about reaching out to others. What just occurred to me, in fact, is that perhaps getting an official diagnosis feeds into social expectations and strengthens the power of those who are entitled to give out those papers, particularly in defining us. Just a thought, but even within a few seconds, I can see how complex an issue it is. A good subject for one of my blog posts, eventually.

    Getting back to helping others, I tend to think that if you’ve spent your life managing on your own, then knowledge, and guidance in self-analysis, might be more what’s important than official recognition or whatever can be defined as support. The DSM sets out three levels of support, but doesn’t entertain the idea that some people don’t need support, or would prefer not to have it. (I can do it myself, mother!)

    Admittedly, a lot of people who define themselves as autistic do it based on one or two characteristics, and very often on characteristics that aren’t even part of the official definition. So anyone writing about it with the intention of informing others needs to be very open about their own characteristics, and make it clear that they own the whole range


  2. Thank you. I am working through this and trying to see the best way to go, according to what i want to accomplish. It is all very new to me because i have only self diagnosed about a year ago. (spent about a year and a half studying and learning the facts about autism before i decided “for sure”. There will definitely be blogs about what life was like before (as a child, an adult, and as an old lady) and after my self diagnosis, as well as reports continuing on my attempt to get an official diagnosis. I appreciate your observations and input!


  3. I did the same – a couple of years of reading and studying before I was absolutely sure, because I’m right on the edge in many ways.


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