To get an official diagnosis or not to get an official diagnosis: that is the question.
And believe me, that’s an “umbrella” question, under which are nestled a bunch of other sub-questions.
I’ll try to sort it all out…
The first question I have to ask myself is, do I want an official diagnosis? The answer is, I think so.
The next question is, why? I think I have a couple reasons for considering becoming “official”. The first and most important reason is that it stands a good chance of bringing me some closure, some finality, some solace, in that I would hear the words “yes, you are on the spectrum” or “yep, you’re an Aspie” from someone with the “right” credentials, someone who does this for a living.
The follow-up question to that is, do I need that closure, finality, and solace? Would it really make me feel that much differently than I do now? And how secure am I in my own self-diagnosis?
Well, I don’t have a crystal ball, so I can’t foretell how I would feel in the future. (And if I did have a crystal ball, the damn thing probably wouldn’t work right half the time for me anyway.)
Foresight, unlike hindsight, is not 20/20. But I can say that I’m pretty damn secure in my diagnosis. However, it’s still not quite the same (for me) as would be hearing words of affirmation from a professional. …I think.
The next benefit I think it would bring is that of being able to feel “solid” in my knowledge of my spot on the Asperger’s/autism spectrum. I’ll explain…
The way the situation stands currently, a conversation might go like this:
Me: I “have” Asperger’s / I’m an Aspie.
Other person: Were you diagnosed?
Me: … Well, I’ve done a bunch of questionnaires and I’ve researched all the criteria. I fit.
Other person: ….
I believe I would feel more confident if I were able to answer the “were you diagnosed?” question with a simple “yes”. And leave it at that.
The next question in line is, do I even need an official diagnosis? Meaning, am I in need of specific services or accommodations? The answer is no. …I think.
Right now, I’m self-employed. I’m married, and we’re not living with my parents. We’re not rich (hell, we’re not even financially “comfortable” yet), but we’re making it. I’m done with onsite school. …I think.
And I know that in the US, there aren’t that many services available for adults anyway. I’m not on any state or federal government rolls of any kind; hell, I don’t even have private health insurance. And I certainly don’t plan to join the US military.
But there might be services, resources, or benefits that an official diagnosis might declare me eligible for, benefits that I’m not yet aware of. These are doors that might open spontaneously for me once I’ve been diagnosed….except that I’m not sure if those doors even exist, much less whether or not they would open for me.
I start thinking of those uncharted waters, those open possibilities beyond the currently-visible horizon, and I get a little optimistic, maybe even excited.
But then, the fear creeps in. There are rumors–lots of them–about negative ramifications. Ramifications like stigma and discrimination. Rumors about not being able to adopt children in the US or travel to certain countries (the US is rumored to be one of those countries that won’t allow you to enter if you have a “mental illness”, and Asperger’s/autism is rumored to be one of those illnesses.
And although I live in the US now, what happens if we decide one day to expatriate and then later, we want to move back but are denied entry?) These are just rumors, ones that I stumbled across while searching the internet.
And of course, I realize that you can’t believe everything you see on the internet; HTML code does not have a built-in fact-checker. But there might be a grain of truth to those rumors.
The most dangerous potential ramification involves my job-related license. My state is strict, and here in the US (and other countries that use the DSM for spectrum diagnoses), Asperger’s is no longer seen as a separate, “less-severe” issue; it has been lumped in with the rest of the autism spectrum, which is perceived (wrongly) as a volatile, irrational ticking timebomb. (Please understand that that’s not my viewpoint–I know better–but “the rest” of society doesn’t.)
And instead of using the more-neutral, less-stigmatized ICD-10 diagnostic system, we stick the entire autism spectrum under the DSM, which pertains almost exclusively to “disorders” of “mental illness”. By getting diagnosed with any condition in that manual, I run a very real risk of being deemed “mentally ill”, and thus “mentally incompetent” to continue holding my license.
These ramifications, if they come to pass, could be life-shattering for me and others like me. And these ramifications are ones that I’ve had a hard time verifying, and thus I have to tread very carefully. They might only rear their ugly heads after the diagnosis has been rendered. By then, it’s too late; there’s no “undo” button.
So, the decision, for me, is not a light one. It could potentially rain hell down on my entire life. …I think.
One workaround is to seek a diagnosis from a professional based outside of the US. One “ray of sunshine” in my situation is that I don’t need the diagnosis to be officially recognized by conventional medicine, nor on record here in the US for any reason; in fact, I’d prefer to keep it “off the books” and out of the system altogether. I’d like to remain under the radar of the US medical establishment.
I had done some searching and found a professional in another country, who became my Plan A “front-runner”, but heard recently that that “Plan A” might not work out after all, at least not for a while.
So, I searched for a Plan B. Not only did I find one, but I also found Plans C and D. …I think.
There are pros and cons to each option. One is a PhD and licensed professional here in the US. The upside to that option is that they’re domestic, willing to do assessments on adults, also offer counseling/therapy and lifestyle coaching, and often conduct appointments via Skype. They have a lot of experience (18 years) and they are fairly progressive, recognizing the positive traits of Asperger’s/autism.
The downside: they’re licensed, PhD level…which means that they might have to put me in their “system”, which of course, is in the US. And I’d be on record, unless I can somehow make an alternate arrangement before agreeing to see them.
Another isn’t officially licensed or recognized, but is quite competent, has lots of experience, is backed by a well-respected contemporary expert authority, and is based in another country. The upside: everything I just mentioned.
The downside: they (to their credit; they are a very ethical entity) disclose that their evaluations aren’t meant to be official in any way, so while part of me doesn’t mind that, the other part of me wonders what the point would be in seeking them out. Since they’re outside the US, there’s also the slight barrier of a time-change (duh; of course there would be). 🙂
I know very little about the remaining option, other than that that person came recommended by someone in a similar situation as I am. This person does appear to be a doctor of some type; I’m assuming a PhD. They’re not located in the US. They came recommended by a friend of friends, someone with no vested interest or specific agenda other than to help. This might be an excellent happy medium, and indeed the way to go.
However, Asperger’s/autistic people tend to be more cautious of the unknown, and only move forward as we feel more comfortable. That hasn’t happened yet, but I’m in the process. Baby steps.
I guess time will tell. Right now, my thoughts are clear as mud, and my thoughts involving the possible options are even muddier. I’m sure there are other options out there, in addition to the ones I currently know about. But, like most Aspies, I’m moving ahead cautiously. I simply can’t afford to take one wrong step.
We’ll see. …I think.
This post is one of my more popular posts!