Going Ahead ( … I think? )

I’m getting closer to being ready to take The Plunge into the world of formal diagnosis.

I have identified and chosen two different assessment entities.  Both recognize Asperger’s in addition to the rest of the autism spectrum.  Both have pledged to keep the results of my assessment “off the record”, since I’m doing this ultimately for my own clarity and corroboration.  Both can–and do–offer services via two-way internet chat/video.  Both have plenty of experience.  Both are intimately familiar with the struggles and challenges of Asperger’s/autism, but both hold an overwhelmingly positive attitude and progressive view of our advantages, talents, and potential.  Both understand my position.

Last night, after placing a couple messages with these entities, my partner and I left the office toward home.  On the way home, I was surprised to feel a sense of “lightness”, of optimism, of hope.  I found it easy to realize that it was connected with the idea of finally leaving “LimboLand” (my term for my own situation) and being able to jump over my “Wall of Enlightenment” with both feet, as opposed to just one.  (I realize that the terms ‘LimboLand’ and ‘Enlightenment’ could theoretically sound snobby, as though I’m putting myself down for not being formally diagnosed and claiming that diagnosis is the only way toward becoming enlightened, but please know that that’s not at all how I intend them; I’m referring only to my own situation, and the words are meant in a very emotionally-neutral, zero-judgment manner not in a denigrative tone.)

A tiny (but loudmouthed) part of me wonders, what if the assessment is negative??  What if I mask/mimic/act too well?  What if I’m having too good a day?  What if I’m “functioning” too “highly” that day?  That loudmouthed side knows better, and might shut up for a while, but has to pipe back up every so often and get her two cents in.

The rest of me tells the loudmouth to shut up, because indeed she knows better.  She’s well-aware of the struggles…the challenges…the awkwardness…the over-analysis…the criticized personality traits…the misunderstandings…

…misunderstandings that include (and led to) incorrect diagnoses in the past.  Misunderstandings that led to unnecessary and inapplicable “treatment”.

There was always a missing piece.

Am I right?  Could I be wrong?

I’m sort of freaking out right now.  Is that “normal” for someone in this position? (The word “normal” is almost laughable–for me–because “normal” has never been used to describe me, and this position, while definitely not wholly unique, is indeed semi-uncommon in the grand scheme of the world.)

Since so much misunderstanding and misinterpretation has happened in the past, my fear is that it will happen again.  It was bad enough when it happened to me as an adolescent.  Now, the stakes are higher; I’m working, married, and older.  Time is more precious, and reservations in my schedule are tougher to make, and the cost of doing so is higher.  I’m also the one footing the bill.  If yet another professional misses my true diagnosis (whatever that may be), then I haven’t gotten any real benefit for the investment I’ve made.

It’s all about steps, I think.  Baby Steps.  Meanwhile, I’m sure the emotional and cognitive rollercoasters will rage on.

But so will I.  After conversing with my partner to allocate the funds and getting the final go-ahead, I will start “adding verbs to my sentences” and start picking out real, tangible calendar dates.

Any good-luck wishes are much appreciated! 🙂 ❤

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18 Comments

  1. I’m really happy you are doing this. You’ll feel so much better for doing this. A second opinion is always best, you know it is. Put it this way, if you wrote an academic paper, no matter how well you knew it had been written, would you send it straight to publishing or submit it for peer review first? Then you’ll have no doubts, no worries. Just be yourself, nothing you can say or do will shock them. They’ve seen it all before.

    Liked by 1 person

    1. Very good points! It’s kinda funny; you’re totally right; I feel lighter already, just thinking about going for formal diagnosis, if that makes sense lol 😊

      Thank you for encouraging me (and anyone else in a similar situation)! ❤️

      Liked by 1 person

  2. Well, based on my experience, freaking out is a completely normal response. I have had so many mixed and unknown feelings before, during, and even after the process of getting evaluated. I’m still sorting them out enough to put into words that can be shared with others. It was more difficult than I thought it could possibly be. I wanted to find out the truth – whether that truth was autism or not – and it was still a harrowing experience.

    Best wishes as you go through the process! ❤

    Liked by 1 person

    1. Whew! Glad to know that the freaking-out part is indeed normal 😊. Thank you for the reassurance, and also for the heads-up that it can be a harrowing experience. That helps me go forward feeling more prepared. And of course, thank you also for the encouragement! ❤️

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  3. I reckon freaking out is normal, all right. I’m right there with you at the moment! 😀 I’m 99% sure that I’m right about being on the spectrum but as I wait for my assessment I’m having moments where I think maybe I’m wrong, maybe I’ve somehow constructed it all in my head and I’m wasting everyone’s time. But I haven’t and I’m not and the moment passes.

    The very best of luck to you with it all!

    Liked by 1 person

    1. Thank you for your perspective! Very reassuring 😊. Good to know that we’re all in good company. Helps all of us feel less alone or “weird”. 😉. We can do this! Thank you for the good-luck wishes–likewise to you! ❤️

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    1. Thank you so much! You’re a true inspiration 😊. In fact, it was you and Aimz/amyes87 that gave me the initial inspiration and motivation to go ahead with this. I’ll be forever indebted to you both ❤️

      Liked by 1 person

  4. Yes! The whole questioning whether it isn’t really ASD IS normal. I had those exact feelings and nearly backed out of my assessment. The doubts will subside. Grief may seep in.

    Liked by 1 person

    1. Oooh, thank you for both the reassurance and the heads-up! Very good to know. I hope your experience hasn’t been too painful, or that you’ve at least been able to heal some? ❤️💐

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  5. I’ll echo the chorus that freaking out and second guessing are perfectly normally. I spent the whole drive down to my appointment to discuss the results trying to work out what I was going to do when she told me I wasn’t autistic. And I spent the weeks before oscillating between feeling certain this had to be it and convinced I was deluding myself. I was most worried that having gotten to the point where I thought I finally had answers for my life, they would tell me those weren’t the answers after all.

    Good luck!

    Liked by 1 person

    1. Thank you so much for your reassurance and encouragement! Your support means so much to me, and it gave me an anchor for my wild chaotic mind that day (and for several days beyond that!) You’re awesome 😘💜💚

      Liked by 1 person

  6. That is great news that you’re able to get an official evaluation! It could prove useful in more ways than you know! Even though it’s “off the record”, I know from experience how important it is to have this documentation on hand as a back-up in case you find yourself in a dangerous situation being misinterpreted by medical professionals.

    As we Aspies age we become more vulnerable to abuse and neglect in medical settings and we may need to provide “proof” of our neurodivergent status in order to receive the care we need for other conditions that invariable crop up.

    I am seeking evaluation too for very serious safety reasons, as this worst case scenario has already happened to me (read my post “The Dark Man” if you haven’t already). Here’s the link to that article; https://patientsrightsadvocate.com/2015/12/28/the-dark-man/

    I am working hard to rise above and put my medical care back on track and as of yet obtained no justice nor reparations for how I was sabotaged.

    The online or Skype evaluation is a great idea! I need to look into that for myself. Would you be willing to PM me on Facebook and give me these sources’ contact info? Here is my Facebook link;
    https://www.facebook.com/PatientsRightsAdvocate/

    I am having to get financial assistance from a non-profit organization locally in order to pay for an evaluation ( since I have so far not been able to get any qualified neuropsychologist to accept Medicare), and the non-profit has limited funds, so I hope these online evaluations are less expensive than going to someone’s office in-person.

    Liked by 1 person

  7. I feel the same way. I did have neuropsych testing done and was positive it was going to lead to a diagnosis and some relief and freedom. Well, nothing was definitive so I’m in the same place and spent a lot of money and two days of nerve-wracking testing. Now, I want to try again because it feels important to me to be able to have the RIGHT label as all the others don’t seem to quite fit. Plus, I need help and resources that I can’t get otherwise. I certainly feel like I was ‘too high functioning’ during testing because I’m really good at formal talks and interviews and staring blankly into one’s face to appear like I am making eye contact. Plus, I get too terrified to say what I’m really feeling and the words can’t come out. Yet, when I left the office, my ‘real self’ smacked me in the face and I spent two weeks writing down everything I wish I had said or wish I had done in front of that doctor. The good news – I have a high IQ, despite how dumb I tend to feel because I don’t understand people.

    Liked by 1 person

    1. Thank you kindly for sharing your thoughts! 😊 I definitely agree with everything you said, particularly the part about having the right label 👏🏼 Some people eschew labels, but I think they’re an important starting point, and they can–and often do–contribute to our identity 💜💙

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