Seeing the Light

Seeing the Light

February was a dark time for me.

The diagnosis of Autism really rocked my world. Not Jed’s diagnosis, but my unofficial diagnosis. Maybe that sounds strange, but it’s undeniable that I accepted Jed 100% as-is and had no fear whatsoever about his future, while simultaneously struggling to accept the same diagnosis for myself.

And I’ve been very alone in going through it. My family is wonderful and incredibly supportive, but they just didn’t understand why I had any issues with this at all. To them, nothing changed. I’m still the same person. I still have the same great life. What does it matter that there is now a term to explain some of my differences? Does it change anything?

I recognize that they’re right. It really changes nothing.

Except…it changes everything.

Only I couldn’t figure out how to explain it to them. I wasn’t even sure I understood it, and with our lives of constant strain, stress, and “expend all energy just staying afloat”, finding time and space to process this news was impossible.

So February was hard. Really hard. I thought, at times, that I was on the verge of a total nervous breakdown.

Fortunately, I’m almost completely out of the dark now. Once again, I have the Ladies Prayer Retreat from my church to thank for my rejuvenation. Even though it only lasted 21 hours, it would be impossible to list all the amazing things that happened there. Suffice it to say, my spirit was boosted beyond my imaginings.

Beginning to see the light enabled me to finally start making some sense of my troubles about the diagnosis. I think I finally understand why it has shaken me so much, and I’ll do my best to explain it here…just in case anyone else is going through this sort of thing.

I have a few analogies to try and explain it. The first is to say, imagine if, at 38 years old, you suddenly learned that you had been adopted. Your life wouldn’t change; you’d still have the same family, job, personality, etc., but somehow, one of the basic foundations of your life is completely changed and everything feels off kilter for a bit as you adapt to the news.

That made me think of a house with foundation issues. I watch HGTV on layovers, and sometimes they’ll show a house with a foundation problem. The crew goes underneath the house, replaces rotted beams, props things back up, and it takes weeks to do properly. When they’re done, the visible part of the house often has cracks in the sheetrock and sometimes in the floor that need patching. After patching, though, everything is as good as new – or even better than new.

Realizing I have Autism was like discovering I had a foundation problem in my “house”. If it takes weeks just to fix a house, I think it is understandable that I needed some time to let things shift around and re-settle, and then patch up anything that needs patching.

One fantastic lady at the prayer retreat told me that she imagines my recent discovery probably feels a lot like the first time watching “The Sixth Sense”. (This might only really make an impact on those of us old enough to remember seeing the movie when it first came out, before everything in the world moved so fast that the ending wasn’t spoiled for us before we saw it.) You watch the whole movie, and then – BAM! – the ending comes and suddenly you have to sort of re-evaluate the entire movie based on the twist ending.

That particular analogy really hit home. That’s almost exactly  what I’ve been feeling like! Like there was a big twist in my life that didn’t really change anything about how my story unfolded, except that now I had to re-evaluate my story because it shed an entirely new light on the whole thing.

I needed time to process and adjust. My life doesn’t exactly allow for a lot of leisure and contemplation. Is it any wonder February felt like a big black whole of emotional confusion?

I’ll give an example of one of the convoluted thoughts that has been passing through my mind the last month or so. My whole life, I’ve struggled to understand people. I mentioned making getting along with people and understanding social situations a “special interest” of mine, and that is true.

What I didn’t say is this: despite all my efforts to do this, I am still often completely baffled by human beings. I still often feel like an alien, or a person from a different era, or in some other way fundamentally “weird”.

I also am exhausted by it. I always have been.

My family and friends will vouch for the fact that I am clearly invigorated by interacting with people. What they don’t know is that for every social interaction that invigorates me, at least twice as many social interactions leave me desperate for solitude and time to decompress.

People wear me freaking out. They’re SO illogical and just…bizarre. I don’t get it. Trying to understand it and navigate that world leaves me drained. The social interactions that charge me up in a positive way are always with people who are – above and beyond all other things – honest. Honest about their own lives. Honest about their thoughts and feelings, even when they realize it makes them “look bad”. Just, people who don’t lie about reality. They don’t have to be right, or even agree with me, but they have to be trying to find the truth. Those people invigorate me.

Those people are not as common as you might imagine, so I do have a hard time with most social interactions.

I do really well on a superficial level. I’m a Flight Attendant, after all! I bet money that the great majority of the people I take care of and/or work with on the plane would not think there was anything unusual about me in the slightest, social skills-wise.

But try to take it to a slightly deeper level, try to have more than a ten minute conversation with someone, and I’ll find myself either buoyed or drained by whomever I encounter.

This last month, I found myself wanting to just say “to hell with it”. There are a couple of people with Autism who write books and blogs that I’ve been reading lately, and one of them wrote that he discovered, after his diagnosis, that while he wants the world to help accommodate people with Autism, he also wants people with Autism to understand that they must also attempt to engage the world on “the worlds terms”. He’s right. It takes two to tango.

But y’all, I’ve been TRYING to engage the world on “the worlds terms” MY ENTIRE LIFE and I STILL feel exhausted by it!

Knowing now that I have Autism made me feel, for a while, at least, like saying “You know what? This is who I am. This is how I am. Screw the world. NO GUILT.”

That was during the dark days. Now that I’m seeing the light, and have had some time to process and ‘patch’ things, I have a slightly different perspective.

Before diagnosis, I always felt like there was something wrong with me. I felt guilty and ashamed that I couldn’t get along with people better than I did. During the dark days, I felt like I was justified in retreating from humanity and shooting it all a big ‘middle finger’.

Now, I know there isn’t something wrong with me. I know I’m just wired differently. Some people are the kind of people I can understand, and the great majority are the kind I cannot. Nothing wrong with that. It just is what it is. I’ll still try to talk to people and make friends, and where I can succeed, I will.

That’s how I’ve always operated, truthfully. The difference now is, when I cannot succeed, I won’t feel guilty or ashamed. I won’t feel badly in any way. I won’t make myself feel inferior. I’ll just shrug, and completely blow the other person off with no guilt.

I have a feeling this will be a very liberating approach for me.

And you see, y’all? That’s just ONE aspect of my life that had so much emotional baggage attached to it that I’ve had to sort through the last month-plus. That’s a lot of baggage to sort through!

I felt compelled to do it, though, for Jed. He’ll never accept himself if his mother, who has the same diagnosis, can’t accept herself. 

I tried to explain that to my friends and family, and I did it poorly. I always made it sound like I was trying to find ways to help Jed by evaluating what helped me over the years. At first, that’s what I truly believed I needed to do. They naturally had the rebuttal of “even though you have the same diagnosis, you’re not the same people. The things that helped you might not help Jed. He’s his own person and you have to help him on his level.”

They were absolutely right, but I still found myself arguing with them. Now I know why. We were both right. I just wasn’t being clear about what I meant.

I didn’t need to sort all this out to discover what helped me in order to help Jed. 

I needed to sort all this out to discover how to accept myself AS Autistic, so that Jed could see me live that example for him. And THAT is exactly how I can most help my son. 

I’m not done sorting. I have a feeling it will take a while. But the devastating initial reaction part is over, and I am finally seeing the light in life again. So from here on out, I think it will be easier.

Or at least, I can hope.

By the way, I catch myself cringing when I write that I have Autism. Technically, Jed and I are, in fact, Autistic. That’s what the new DSM-V says. Even though we got our diagnosis after the official terminology change, I find myself wanting to use the word “Asperger’s” to describe us. I feel it is a much more accurate description of what we deal with.

I always try to be accurate in my writing. I try to use the correct terminology whenever I know to do so. So I’ve been using “Autism” every time I want to write “Asperger’s”.

My problem is that I feel the correct terminology is inherently incorrect. I feel “Asperger’s” is the correct descriptor for us. So, from now on, I will describe us as Aspergergian instead of Autistic. Please understand that I know the official, correct terminology. It’s just not my fault that the official, correct terminology is improperly descriptive!

Has anyone else been blindsided by an Asperger’s/Autism diagnosis and had to process that news? How long did it take?

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4 Responses to Seeing the Light

  1. Leslie Guy says:

    You can just call yourself an Aspie! I know quite a few people in the AS world call themselves that and it makes it sound a little less “technical”. I hated that they took out Aspergers as an official name and grouped it with the big Autism world, but Aspies are different. Autism is so wide in its variance, that lumping everyone together just isn’t fair and doesn’t differentiate someone who has little to no verbal communication from one that has social anxiety. But aside from that, having a diagnosis is far from fitting it into your everyday life and sorting out how life has changed and will change, especially at 38. I knew Tyler was different from a very young age. I had no idea about Autism or Aspergers when he was little. Aspergers wasn’t officially added to the Autism spectrum until 1996, so not much was known about it. So he was just diagnosed with ADHD and medicated. While it helped with focusing issues, it didn’t address the social interaction and that’s where the heart of Asperger’s lies. Now at 16, you can barely tell he has it until you see his little quirks and his tendency to go on and on about something none of us know or care about. But give yourself some grace and let time help you come to terms with everything, not just for yourself but for Jed as well. Just know that those of us who have known you, love you just the same and are here to help you navigate through repairing your “foundation”.

  2. Kay says:

    Wow. I stumbled across your blog yesterday & have been playing catch up. I’m in the process of having my son evaluated. I love him just the way he is, but I have some concerns and I just want to be able to help him the best way I can. We haven’t gotten a diagnosis yet, but of course I have googled and used Web MD and even though it won’t change anything, I feel like once I know for sure it will change everything. I don’t know if that makes sense! Anyways, I’m a flight attendant as well. I’m happy to know that you are one & still able to help your son. I sometimes worry I’m gone too much & that this is all my fault!

    • Carrie says:

      Oh, Kay! I want to hug you right now. It’s not your fault. You’re not gone too much. (And if you say that to yourself often enough, like me, eventually you’ll start to believe it. Ahem.) Seriously, though, you’re clearly a great mom and you need to give yourself and break and a pat on the back.

      Having the diagnosis does make a huge difference. I also love my boys just the way they are, but I know what you mean: if we want our kids to have the best possible life, we have to help them learn to be the best version of themselves possible…and that means knowing where their shortcomings might be.

      Huge hugs and prayers, Kay! You and your son will be just fine, and he’s in great hands. 🙂

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