BECOMING

20 Aug
August 20, 2013

 

Almost every aspect of life involves learning, doesn’t it? You’ve probably heard the old adage: Live and learn. It starts the moment we take our first breath and doesn’t stop until our last. But what happens when you’ve spent your life learning to be something you could never possibly be. Something you were never meant to be.

And you didn’t even know it.

What if everything you learned about yourself, everything you thought you knew about being You, was wrong? Maybe you found out little by little over a long period of time. Maybe you found out in an instant. Maybe you discovered the truth while trying to help another. That’s how it happened for me.

That’s how I found myself.

Discovery

I love to learn, formal schooling aside I continually self-educate. I rarely seek others’ advice or suggestions and when it comes to information, I’m a fact-finding, research-driven being. When my son was diagnosed with autism, the neuro studies I had been submerged in shifted quickly into an area of specialization dealing in Autism Spectrum Disorders. Why not, right? Being a neurological disorder it fit easily into my special interest. It took me some time to accept my son was Autistic, I talked about that here, and I wasn’t in denial, but the very little knowledge I had of autism did not describe my son.

Not at all.

So post-diagnosis I, of course, began researching the information myself. I’m not one of those people that believe if you have an MD, PhD, PsyD, etc… attached to your name that your words are infallible. So the research began, and when I came up for air, finding that I indeed concurred with the diagnosis in question, it was not only my son’s diagnosis I held triumphantly in my hand.

It was mine, too.

Enlightenment

I remember asking J to sit down, that I needed to talk to him, my eyes glassy with unshed tears. His face became instantly white, “Is it bad?” he asked. “Are you leaving me?” Because I rarely share, any time I tell J that we need to talk, he always assumes the worst and at the very least prepares for my departure. That, too, is subject for another post.

Once J’s fears were alleviated, that he was not wifeless and that I would not be running off with the pool man (we don’t have a pool), he was prepared to listen. Before I could begin: “Is it an illness? Are you dying?” While I consider myself a poor partner for J, and voice my opinion on that topic to him from time to time, I find it ironic that he’s concerned he will find himself at some point Renéeless, and that the idea scares him.

Enigmatic.

Assured that I wasn’t running off and that I had no knowledge of my impending death, he sat with rapt attention, his eyes now glassy with the tears I could no longer muster nor consider shedding.

“I am Autistic.”

J laughed. I waited. Once finished he pursed his brow in confusion. I then produced evidence of my self-proclamation. Pages upon pages of research describing characteristics, behaviors and symptoms of my disorder. Pages and pages of…

Me.

Like me, it didn’t take long for J to accept what I told him. It all fit. Everything. It was all so Me that we couldn’t even entertain the shadow of a doubt. I was Autistic. It was there all along but it took the diagnosis of my son to find it.

Mirror Me

I cannot tell you the relief I felt in recognizing myself in the words of others. I had never encountered such a thing. A realization that there were others like me! This discovery has only been over the last few months engaged in social media. You see, when I was formally diagnosed two years after my self-diagnosis, I basically thanked my therapist for his time, took my paperwork and left. I haven’t gone back, not for myself, anyway. And I should. I need to.

I gratefully, thankfully and excitedly embraced my newfound Autistic friends, and for the first time in many, many years, I began to feel happiness. And Peace. I hadn’t known peace since I don’t know when. I can’t remember any parts of my past where I felt at ease, so maybe never. And I found that I liked me. I don’t think I ever liked me before - not for 37 years. I didn’t hate me, I just didn’t see anything remotely attractive in my person. I guess you could say I was indifferent. I had grown accustom over the years to a disconnect from most people, which was only supported by the years of name-calling:  cold, rude, hateful, uncaring, heartless, bitch… But you’ve heard this all before. I talked about it here.

Realizing so many new things about myself, through the kindness of other Autistic people, I came to understand that I wasn’t a spiteful person numb to the feelings of others. And I was elated. The previous thirty-odd years of my life were entertained under a great big misunderstanding! I wasn’t bad, after all. I wasn’t! And with that revelation, I found some things I wasn’t expecting:

  • Anger
  • Sadness
  • Envy
  • Dare I say… Regret

I was so angry, and if you’ve read Black and White, you know what I’m talking about. For those of you who have not, I’ll sum up by saying I spent a great deal of my youth, well into adulthood angry (and nervous, and unsure about everything). My therapist did help me understand my proclivity towards anger and its roots in my neurology. But this was a different anger, it wasn’t at being misunderstood, or from misunderstanding others. It didn’t stem from the frustration I feel most days at being the square peg. It was anger at the unfairness, and this is where sadness and envy came creeping in as I asked myself, none to gently…

Why didn’t I know?!!

Why did I have to grow up feeling unlovable? That I was a lost cause and not worth a second thought from anyone. That if I were to disappear, it wouldn’t change a thing in the lives of anyone around me. That my life was one of insignificance and I was truly

a person of no consequence.

And finally, this person who cannot remember ever feeling it, actually began to feel regret. It made me ask questions that I couldn’t possibly answer: What if I had known? If my family and friends had known? Would my home life have been different? My school life? My ability to understand and have healthy relationships? It was so long ago, the 1970s – 80s, and aside from what I can only guess might be misguided attempts at therapy and sub-par special education, I can’t imagine there would have been any difference.

While it was fleeting, I will admit that regret reared it’s ugly head and magnified the anger, the sadness and worst of all, the envy. Being older, I generally don’t envy people as a rule because I’ve learned no matter how things look on the outside, you have no idea about a person’s life experience or the possible devastation on the inside. Looks can be so

Deceiving.

But there it was, ugh! Envy of all those who knew before I did. The ones that had years to come to terms with their diagnoses. To meet and learn from other Autistics so they could (hopefully) embrace their neurology. Thankfully though, recognizing regret for the waste of time that it is, I shut it down quickly. I don’t dwell in the past. There’s no point. And fortunately, these misguided feelings were diminished by the very people I envied. The regret shifted swiftly to understanding and the envy to gratitude. Because it was these very people, the Autistics I met, who showed me the way to Me. And I listened gratefully and with a relief I cannot convey.

If you want the reality of autism, talk to Autistics.

Beginning

So for all intents and purposes, my life started at 37. Late in life, maybe, but not too late. It’s never too late. That’s a life lesson worth embracing. I hope this post doesn’t come off as me sounding like a whiny child shouting “Unfair!” into the wind, because I don’t actually feel that way. The past is over. It has been fair. Whatever dysfunction, insecurities, anger and fear I grew up with are big part of what made me who I am. And I don’t know if this sounds bad, but after 40 years…

i like me – it might even be love ;)

People who get to know me say I’m too hard on myself. I don’t see it that way. No, I don’t cut myself slack and while I live to be right, I’m the first to admit when I’m wrong. I don’t reserve softness for me because I don’t require it - never did - but others do. And maybe that is something I will learn… that I do need softness. That I require care and compassion from others. I have no idea. This new life started less than 5 years ago, most things I’m learning are literally

news to me.

I think it’s why I’m more open to admitting when I’m wrong. Everything is new. In so many ways I’m like a child all over again except this time I’m old enough and wise enough to admit my mistakes and, hopefully, expect less than perfection from myself (still working on that one).

I find myself, a grown woman, standing in the center of a dance floor that I spent my entire life skirting - bodies surrounding me, moving to music I cannot hear. Because when I see the seemingly choreographed movement around me, I am more aware that I don’t know what moves others, and that I never did. And that a lot of the time…

I’m lost.

But I’m learning that it’s okay to not hear the same music. And it’s okay to not be moved by what touches others - doesn’t mean I’m not moved. So if I will be in a constant state of learning my entire life, and if I’ve only just begun this new journey, will I ever be complete? I don’t think so, but that’s not a bad thing:

“I have been running so sweaty my whole life, urgent for a finish line. And I have been missing the rapture this whole time of being forever incomplete.”  -  Alanis Morissette

There’s something to be said for continually learning and  being able to accept change, something that can be extremely difficult for me. It means I’m growing. Moving forward. And while I think I will continue to fight the unknown, the unpredictable, because I am wired to do so; I will try to meet it head on with the strength of finally knowing Me. In this new life, I am finding myself able to take comfort in the knowledge that I will always be

B E C O M I N G

 

 

 

 

6 replies
  1. Petra says:

    Beautifully put. For me, the diagnosis came at 33, after losing my job. Again. For being so difficult.
    Yes: anger, sadness, envy, regret. Still some anger at how many people, incl. professionals who should know better are so full of prejudices as to what autism looks like.
    But now also: relief and joy to find the autistics who, as you say, show me the way to me.
    Thank you for being one of those :)

    Reply
    • srsalas says:

      Thank you for reading and commenting! Sorry about your job :( hate to hear that. Yes, it’s so important to hear from Autistics (the real autism experts!) on the subject. I’m glad to meet you by the way – I’ll look for you on Twitter and follow :)

      Reply
  2. Decky says:

    Everything you write deserves to be read and spread for others to read. When I read your lines I feel like I’m reading my words from my head.

    You’re a wonderful woman

    Reply
  3. Michele D says:

    Your relatives (and mine) Jamie and Rachel gave me your book to read. They thought I should read it because my 7 year old daughter has high functioning autism. While reading the book it made me look more at myself and see that I too may have autism. My husband says I am a lot like you in some ways, he read your book too. I am tring to decide now should I get formally tested. I was reding Temple Grandins new book and she mention not to get diagnosed unless there are services needed ( I think she meant adults). Is there anything that became a problem because of your diagnosis? Things like people do not want you to watch there kids or something like that. As an adult what kind of doctor would I go to get tested?

    Michele

    Reply
    • srsalas says:

      Hey Michele!
      Getting tested is a personal choice. I am friends with many adults who are formally dx’d and just as many who are self-dx’d and happy with that. Some are openly Autisic, some are not. I have never had issues with regards to my dx. I haven’t read Temple’s new book, so I can’t say what she means, but I know she use to say to not get the dx if you didn’t need it because insurance was terrible in regards to ASD. Having a child with autism, you have probably already experienced that.

      On a personal note, I was greatly relieved once formally dx’d. The most important thing I’ve done since, is connect with other Autistic adults. I’ve learned so much more about myself through them. A couple posts you may want to look at are:
      “Autism Acceptance” http://srsalas.com/?p=2503
      “Do Not Try This At Home” http://srsalas.com/?p=2351

      In regards to an adult diagnosis, you’ll want to find a Doc that specializes in ASD in adults. Your daughter’s doc may know of one already. You can also do a lot of self-research: Simon-Baron Cohen’s AQ (Autism Quotient) and EQ (Empathy Quotient). Also read blogs of other Autistic people. Check the Blogroll on the left-hand column of my page and there are many.

      I hope this helps! If you prefer, please feel free to email me through my contact page on this site. The email goes directly to me – no one else!

      My Best to you and your family!

      Reply

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