Land of confusion: thought-clouds on whether or not I should go for an official Asperger’s / autism diagnosis

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.

🙂

***

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22 Comments

    1. Yeah, some regions are getting better, but mine isn’t one of them, at least not yet. I live in the land of anti-vaccination and holistic parenting and although I can support holistic stuff, their very idea that autism itself is in “need” of “treatment” or that it’s “caused” by vaccines bothers me greatly. 😊

      This may sound kind of crazy, but we also have sort of a quietly-building Big Brother government over here, and I don’t want it on record that I fit criteria for what they may think is a “mental disorder”; that diagnosis follows one around and the prevailing attitude is one of fear, that somehow we’re loose cannons plotting school shootings and whatnot. This country (the US) is a little irrational when it comes to autism. And it’s a really hot topic here right now. So I need to walk very carefully. It’s unfortunate. 😞

      Liked by 1 person

  1. For what it’s worth, when people ask if I’m diagnosed, I launch into the social vs. medical model. The neurotypicals tune out and see this as a display of my Autism in action and Autistics nod and say, “Hey, you’re right!” My family (the medically diagnosed) and the neurotypicals accept that I belong, and people who aren’t jerkfaces accommodate me when I ask for reasonable things and don’t demand paperwork. Diagnose or diagnose not, but you are already Autistic. You don’t need the medical stamp of approval (after all, that’s the field obsessed with “cure”) to be who you are. But yeah, real world not set up for us and all that. Good luck, whatever you decide!

    Liked by 2 people

    1. Thank you! Your strategy is awesome; I really like it! I think I’ll have to start doing that. You’re absolutely right; “officially” diagnosed or not, an autistic person is an autistic person, and the stamp of approval doesn’t change that. I don’t want to be cured, either 😊. I think counseling by someone who works with people on the spectrum may be helpful because they will probably be more familiar with our different way of thinking and processing emotions, but that’s about the only benefit I can currently think of. Thank you for the warm wishes, too 😊

      Liked by 2 people

    1. Spot-on! One of my pet peeves is how some of the “official” sources of information label spectrum conditions as a “mental illness”. What really gets me is that this even (and *way* too often) happens in research! Some researchers will, in passing, use phrases like “psychological/psychiatric disorder/illness” (any combo of those 4 words). I want to shake them and say, “neurodevelopmental! Not “psych”-anything!” Lol 🙂

      Liked by 1 person

  2. Unless you’re adversely affected in your work, there should be no reason to revoke your licence, diagnosis or not. You’ve been as you are the whole time, after all. I think the justification for bringing all variations of autism into the single category was to illustrate that aspergers can be as much an impairment as ‘low functioning’ (I hate that term) autism.

    Aspergers itself is an incredibly broad category. I live in hope that one day, when someone says ‘autism’ others will look past that word to discover the strengths unique to the individual rather than seeing someone ‘disabled’.

    If you’re still looking for diagnosis options outside the US, look up Tania Marshall (Australia). She’s degree qualified and actively studying autism in women. Her fees for assessment are extremely reasonable too.

    Liked by 1 person

    1. Thank you for sharing your thoughts! 😊 You make several excellent points, and I very much agree! 👏🏼👏🏼. I, too, hope that one day, people will hear Asperger’s or autism and not even bat an eye, knowing we’re just as valid, human, intelligent, and capable as anyone else ❤️

      I would also hope that my status would not cost me my license 😊 But alas, the possibility is a real one, even if theoretical. And although it may not be much of a threat at the present time, who knows what the future holds? 😧 I’m a cautious optimist, while also reminding myself how often I’ve been both uplifted and disappointed by the rest of the world 💖💖

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  3. As an independent living skills advocate: When people ask you right now, this very much right now before you have a a dx (diagnosis) by a professional specialist, “Oh, you’re autistic? Were you diagnosed?” I might respond with another question. “Why do you ask?” Depending on what they say you could tell them the truth or not. “I self-identify as autistic,” or “I’m in the process of obtaining a dx,” or simply, “I just told you, I’m autistic.” and leave it at that. You can even say, “I’d really rather not discuss that. It’s private and something I’m not comfortable with. Let’s change the subject. Is there anything else you’d like to know about autism and me you’d like to know? Or we could just go You don’t have to answer nosy questions. 🙂 Disclosing or not, once you have your dx is entirely up to you. You’re not obligated.

    As to whether or not you “should” get the diagnosis from a professional, I can speak to that part as a mom because I made that choice for my daughter so that she could get services in school. It was a necessity for her. We don’t disclose to anyone who doesn’t need to know, however. As an ILS advocate, I’ve advised people that it depends entirely on the issues you brought up. If it will help you with services; give closure or perhaps empowerment; if it can help identify a “you” that can identify with an entire community of people that thought they were alone in the same differences; if the dx can boost the confidence that your instincts are more correct than you give them credit for then it’s worth it. Having a name for something, even if it means it might not be *exactly* what we thought it was can be validating and freeing. I have disabilities that are different, but the dx’s were very important. They helped confirm that I’m eligible for SSDI and SSI, for instance. If you couldn’t work, you could be too.

    Liked by 1 person

    1. I totally love your strategy! Your idea for a response is an excellent one 😊 Thank you for that! You’re completely right about everything else you said, too! 👏🏼👏🏼❤️

      Liked by 1 person

  4. I don’t have an answer for you, just wanted to offer support as you make your decision. I struggled a lot with the decision of whether to go for a diagnosis and am glad I did go because it gave me some good insight into myself and also gave me a way to talk to my boss about accommodations that I needed in order to be successful at work. I hope that you are able to figure out what would be the best direction for you.

    Liked by 2 people

    1. Thank you so much for that support! Just knowing you’re standing by me is in itself a priceless offering 😘💞💜

      Like

  5. I suggest Unique U psychology in Melbourne, Australia. Danuta is a specialist in ASD in females. I found her prompt, open to my quirks and reasonably priced. She knows of others in the field who may provide assistance, if she isn’t able to. I wish you well.

    For me, knowing I am not certifably insane, as others have accused me of, was worth everything. I am more relaxed, more forgiving and eager to embrace all that I am…and have kept folded and hidden in my closet for safe keeping.

    Liked by 1 person

    1. Thank you so much for the resource! Thank you also for sharing your thoughts 😊 Very much agreed! ❤️❤️

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  6. I’m so much having this struggle right now. In the UK getting an official diagnosis as an adult though the NHS is a long, long difficult process, and they often wont refer you. Like you I dont want to it noted on medical records to give me the freedom of who I reveal it to. I have found a private clinic who is nearby, but there is the cost. Part of me argues why do I need the verification of another, part of me says no one will believe me if not. Part of me says what if they say you aren’t, then what…left in an even more confused state. Part of me says if I get the nod, then the door closes behind me, its what I am, on paper. I hate been judged, so the assessment will be hard as hell and it terrifies me. I made the enquiry a year ago and still hesitating what to do. I recently disclosed to my doctor my suspicions of being ASD – I felt I had no choice as I had to go in regarding a potentially life threatening condition, which could be made worse by my selective eating disorder and thus bad diet, which is most likely co-morbid to the ASD which makes the SED almost impossible to overcome (so many links in the chain). Thankfully he didnt make a big deal about it, but was treating me a bit more sensitively than before. I really dont know what I want to do.

    Liked by 1 person

    1. Ugh I feel you, friend 💐. It’s a big struggle and a huge dilemma. Some people treat getting a diagnosis is a no-brainer, and it’s even implied to be the “right” thing to do! But what those people don’t realize is that there’s a heavy potential cost of being officially diagnosed on the books. Child custody, job positions, entire job fields, denial of entry into certain school programs, etc. Hearts broken, dreams lost. (These have all happened to people I personally know 😱😰). And once it’s on the books…it’s next-to-impossible to get it removed. So yep, I think your caution is wise and I love your strategy. Money is definitely a thing when going private, but if you don’t need the diagnosis to be on the books for a particular reason, then I think going private is fine😊. Some of my friends on both sides of the pond have gone through Tania Marshall for theirs, and they swear by her. I’ll probably get assessed by her, too, because her reports are very thorough and detailed, and they’re not depressingly negative 💓💓

      Liked by 1 person

      1. I saw your link to Tania Marshall before, and I think that might be an easier way for me. Its certainly something to seriously consider, and I might send an email once I have got my head around it, and see what it would need. Thank you, you are helping more than I can say.

        Liked by 1 person

        1. Awesome! So glad you’re considering your options. As I mentioned, so many people rush forward without considering all the possible ramifications. I’m so happy for you that you’re keeping your eyes and mind open 👏🏼. I sense that there’s also some emotional turmoil involved, about which I totally feel for you, and I know that it will pass in time 😊. Yeah, Tania is pretty cool from what I’ve heard. I have been given the heads up that she can be slow to respond to inquiries, and there has been some question regarding some potential minor ethical issues, but the people who told me about this also advised me not to let it get in the way of going through her for evaluation. I’m happy to provide any specifics you’d like over email or other private channels (I’m also on What’s App, a free worldwide texting app for mobile). 💙💜

          Thank you for your kind words of encouragement and support – they help me more than I can say! 💖🌟💖

          Liked by 1 person

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