A year later, self-diagnosis is ‘still’ ‘valid’ (duh) :)

I apologize for the rapid-firing of blog posts today.  I feel an internal compulsion to play catch-up, making up for lost time, after a week of strenuous workloads, debilitating pain, and my first histamine attack in five months, followed by a necessary anti-histamine, followed by too much sleep that was also too good…

…which arrives us at the potpourri of pent-up energy and rollover sleep-surplus that makes for a wired-awake and uber-productive blogging session.

(And truth be told, I had a lot of the ideas for several of these posts written out, almost word-for-word, beforehand, so I’m sort of cheating lol)

But I’m getting way off topic.  I just thought I owed my lovelies an explanation for my over-talkativity, and my silence despite my desire to publish this on Thursday.

Because Thursday was, after all, as someone graciously tweeted on Twitter, the one-year anniversary of the #SelfDxIsValid (Self-Diagnosis is valid) hashtag (and accompanying campaign).

I believe that that deserves recognition and celebration.  It at least deserves to be talked about.  And I’m going to talk about it.

Going way back, in the one-month-and-four-day limbo between my Asperger’s/autism spectrum self-discovery (realization) and the birth of this blog, during which the ideas for blog posts were quickly piling up, I was spending all of my non-working waking hours nose-first in my mobile screen.

I researched everything, starting with basic characteristics, then presentation/phenotype in adults, then females, then blogs, and then… the more Intricate Questions.  Questions like, what about self-diagnosis, anyway?  Is it accepted within the community?

It didn’t take me long to scour the internet and find that absolutely, yes, it is generally accepted by a vast majority of people within the Asperger’s/autism spectrum community.  I don’t have sources of hard stats, but the number 70% comes to mind.  That figure would probably make sense; having polled both Twitter and Facebook, I found that the acceptance of self-diagnosis ran just above 50% and 95% respectively.

I imagine that the Twitter poll ended up in the “wrong” hands (the hands of a few neurotypicals, for whom it was not intended, nor were they invited or expected to respond), and because of that, the poll results shed a harsher light on the issue, and were thus, probably lower in self-diagnosis acceptance than average.

Facebook, on the other hand, achieved more accountability through a lack of anonymity, which might have skewed the results more favorably than average in the pro-self-diagnosis direction.

So, figure that the reality of self-diagnosis acceptance is somewhere in the middle.  In a fit of Aspie-uncharacteristic irrationality (meaning that as an Aspie I should be much more rational than I’m being right now), I’ll stick with my purely unscientific 70% figure.  Given the blog articles/posts I’ve read, that’s probably on the conservative side, meaning that the number is probably a little higher.

I joined Twitter in July, and it didn’t take me long to find a rosy-ring of lovely people (seriously–they’re awesome), who also overwhelmingly supported the concept of Asperger’s/autism self-diagnosis.  It didn’t take me long to find the hashtag itself, nor did it take long for me to start using it.

It did take me a while to realize that it pushed a hot button with a tiny-but-loudmouthed minority of people supposedly on the Asperger’s/autism spectrum.  These were people who had “real” diagnoses.  These were people who wore it like a badge of honor.

(What follows next are some really brash suppositions, so if you’re not in the mood, I won’t harbor any hard feelings if you back out now…)

These were people who were likely diagnosed at young ages, as a result of efforts by privileged families, or in privileged regions.  These were people who had grown up with the label, and I’m not sure they would’ve known what to do if they were to be stripped of that label at some point, or if their exclusive “club” were “diluted” by “regular” “newbies” like us coming on scene.

The self-diagnosis naysayers might have been thinking to themselves, “but they look too normal!  They can’t be autistic!”

And in a way, that was true; on the surface, some of us did “look too normal”.  We held down jobs (sometimes, unbeknownst to them, not only by the skin of our own teeth, but also probably that of someone else’s).  Some of us were in long-term relationships (some of us were even married); some of us had children.  And so on.  We “came barging in” and busted all the stereotypes or otherwise ran contra to that which some of those people were likely living.

What they didn’t realize, however, was just how much energy it took in order to wear the facade of a “normal” life and attempt to conform to the ideals of a neurotypical world.  They didn’t get to see the fatigue we came home at night with, the body aches and pains we couldn’t explain, the chronic health conditions we developed after years of feeling like misfits without even realizing we felt that way.  Or without even realizing we were.

Having gotten their diagnosis handed to them during their younger years, they didn’t endure the self-abuse we heaped upon ourselves as we wondered why we couldn’t “just” do “this” or “that” like “everybody else” or as easily/effortlessly as the world at large.  They weren’t there to witness the labels hurled at us by the ones we loved most, such as “lazy”, “underachiever”, “angry”, “controlling”, “dreamy”, “airhead”, “ditzy”, “spacey”, “not all there”, “difficult”, “uptight”, “stubborn”, “over-reacting”, “too sensitive”, “obsessive”, etc.  They weren’t there to witness people accuse us of just “making excuses” or having “anger issues”.  (These are all real-life personal examples, by the way – I’ve endured them all.)  And these put-downs come at you from all sides – parents, teachers, classmates, professors, partners, other relatives, friends, even counselors at times.

Before our Asperger’s/autism spectrum realization, we had no real support.  We had no allies.  We were just strong–or we had no other choice.  It was a matter of survival.  And the human organism is capable of some pretty drastic shit when it’s a matter of survival.  We did what we figured we had to do, and that was that.

That doesn’t mean it was healthy.  It doesn’t even mean it was sustainable.  Look around; practically every adult-diagnosed Aspie/autistic person I know has chronic physical and/or mental health issues from years of trying to stuff their star-shaped selves into square-pegged holes.  It never ends well.

I also noticed this loud minority of anti-self-diagnosis people become particularly protective of their label.  We newcomers weren’t “real” enough.  After all, we had gotten missed in childhood, right?  Well, wouldn’t that mean that we didn’t have “enough” of a “problem”?

NO.  It just means we had to work that much harder.  And that we suffered that much more.  So maybe a little compassion is in order?  At least, a little respect.

For those who’ve found this blog more recently (Hi! 🙂 ), I did indeed get my formal diagnosis in November.  It took all of two thorough couple-hour sessions over the course of a week and poof!–I have my piece of paper (thank god(dess)).  And, exactly as I had suspected, I not only met–but beat–the criteria.  The diagnosis was an easy play to call.  My PhD psychologist didn’t have to work too hard at deliberating before banging the gavel down in favor of a diagnosis.

I was dual-diagnosed, based on both the ICD-10 (primary) and the DSM-V (secondary), with Asperger’s and Autism Spectrum respectively.  (Although it is conventional to use the DSM-V in the US, where I live, and although that’s what is “supposed” to be used, diagnosticians are not required to use it.  They can use any reference they want; the more conventional it is, the more credibility they’ll have, but that’s neither here nor there, especially if they use both diagnostic coding systems.)

I thumped my chest and strutted in favor of self-diagnosis being valid before I got my official diagnosis.

And guess what?

Nothing has changed.  I wasn’t going to become some hypocrite and say, “well, now that I’ve got my diagnosis, to hell with everyone else.”  Because that would have been an asshat thing to do.  It wouldn’t even make sense.  Hypocrisy never does.

I had heard of a few urban legends of some people informally co-opting the Asperger’s/autism labels, applying those labels to themselves, and then using them as excuses to act immaturely or antisocially, or as ways to make their lives more interesting, to make themselves seem special in some way.  Personally, in almost a year of being very active in terms of internet searches and social media, I have yet to stumble on such an instance for myself.  That doesn’t mean it’s not out there.  It just means that I haven’t seen it (and everybody knows how often I’m on Twitter; what they might not know is that I’m a moderately-frequent lurker and occasional commenter in a number of Facebook groups, too.  Not to mention reading dozens–probably a few hundred by now–blogs.  And I still haven’t personally witnessed anybody faking it).

So, when the anti-self-diagnosis crowd rallies against the idea of people faking Asperger’s/autism, I think that concept is a little overblown.  It’s kind of like how the US (I can’t speak for other countries) perceives and handles terrorism; sometimes, somewhere, it probably happens–but hardly any of us are witness to it in everyday life, and the measures taken are an ineffective overkill, and it has become a battle-cry topic.  Not trying to get political here, just making an analogy. 🙂

But the battle-cries pour forth from the people against self-diagnosis anyway.  Again, they get defensive of their label, and that defensiveness gives rise to hostility.  Hostility, why?  Hostility often comes from fear or anxiety.  Except I don’t see any reason to be frightened or anxious.  It doesn’t seem rational to me; by claiming a status for ourselves after much research and deliberation and playing devil’s advocate to ensure that our issue isn’t actually something else, how are they affected in any way?  They already–and still–have their diagnosis.  They have their disability benefits.  We’re not going to take them away.  We’re not going to cause them to lose anything.

Was there envy somewhere?  Maybe stemming from the fact that some of us were employed and some of them weren’t?  (That would be silly, as there are plenty of ways to find your purpose and contribute something to the world if you want to, and only some of them involve employment.)  But if that were the fire fueling their ire, does that mean that there might be a little internalized ableism on their part?

By denying the self-diagnosed any recognition, the naysayers are also participating in ableism themselves.  They’re failing to check their own privilege.  They’re also implying that we can’t possibly know ourselves as much as some neurotypical with a clipboard and pathology-based training, which means…what?  That, deep down, they’re actually associating autism with mental/intellectual disability and/or incompetence?  That somehow, neurotypical people who have barely any concept of the reality of the autism spectrum must somehow remain the gatekeepers and keyholders to our lives?  That they’re the only true source of legitimacy and validation?  Really?

That’s a pretty low blow – not just to us, but also to themselves.  I have to wonder what their own self-esteem and self-concept are truly like.  I’m not implying anything here–just wondering.  It’s an open, neutral question.

I’ve also heard the complaint that we can’t possibly be as objective about ourselves as someone else can be about us.  I beg to differ; I’m a pretty dang objective person.  What is, is, and what isn’t, isn’t.  It’s as simple as that.  Either something happened, or it didn’t.  A person knows themselves best.  I’ve lived this life, in this body, with this brain, for 39 years; I’m very likely to get missed by someone who has a pathological view of Asperger’s/autism and is operating solely on diagnostic criteria developed with exclusively young boys in mind.

Besides–we’re all human, and there’s a saying that begins with, “to err is human”–which means that people make mistakes!  Not one person on the planet is perfectly objective.  Not one person is without some kind of bias.  So just how objective can a clinician be?  They’re human, too, and thus, they’re prone to all the same errors.  The difference is, they have a second-hand, outside view of autism that usually revolves around pathology, and we Aspie/autistic people have lifetimes of a spectrum of firsthand experiences–the good, the bad, and everything in between.

I think it’s OK to be a little weary of the term “self-diagnosis”.  Not the concept of suspecting one might be on the spectrum, gathering information from credible sources, assessing oneself, ruling out other neurological/psychiatric conditions, and then finally arriving at the Asperger’s/autism realization.  That is perfectly fine.  I held that view before, and I continue to maintain it–staunchly.

I think that some people may take issue with the “diagnosis” part of the term.  It might insinuate that people are attempting to act as doctors when they lack the training and licensure to do so, and that their opinion is equal to that of a medical professional.  For me, that’s a gray area.  I’ll disclose my bias: I’m a doctor myself.  I help people with chronic conditions.  I can’t tell you how often people have come into my office, having diagnosed themselves off the internet and convinced that they have a certain condition, when actually, they have something else.  I’ve even had an occasional person get pretty upset with me when I told them they did not have what they thought they did, but they had these other things going on instead.  I “get” that people often latch onto a condition or label for various reasons: maybe it’s attention-seeking (it’s more common than some might know); maybe it’s adherence to a fad.  I don’t know.  I don’t try to suppose the motive.  I just want to help correct the problem.  But it does help to identify the right problem.

But that’s physical and biochemical stuff.  Stuff we have tests for.  Stuff we can conclude with certainty.  Stuff that doesn’t leave much open to interpretation.  We obtain biological samples from the person’s body and measure certain markers.  It’s pretty open-and-shut.

Asperger’s/autism isn’t like that.  There is no biomedical test as of yet.  There are, however, stories of gaslighting, even the withholding of a diagnosis by physicians for whatever reason (that’s next on my research list).  The mental health field, always kind of a vague abyss that flittered on the periphery of scientific acceptance, has developed and progressed incredibly slowly.  Not having incorporated the information from scientific research and, oh, autistic people ourselves (?), doesn’t bode well for people who’ve been living, unbeknownst to everyone, on the Asperger’s/autism spectrum their whole lives.  Lives of confusion.  Lives of never quite “measuring up”.  Lives of accusations and judgment.  Lives of criticism and bullying.

Enough is enough.

When people in the LGBT+ community come out to their families, friends, etc, they’re taken seriously (at least, by anyone who isn’t in La-La Land).  Their status is accepted without being demanded to hand over their diagnosis letter.  People believe them at their word.  It’s a sexual orientation.  It’s a given.  Science is finally catching up to realize they (including myself) were born this way.  You don’t see other LGBT+ people questioning the newly-out; they simply say, “welcome!”  And they do welcome them, into the loving fold.

The same attitude adjustment is desperately needed by those who are vocally anti-self-…(evaluation?  Assessment?  Realization?  Discovery?  Whatever.  If the word “diagnosis” is an uneasy one to swallow, that’s OK – substitute your word of choice.)  This vocal minority needs to stop shunning people who have All Things Asperger’s/autistic except that magical neurotypical-granted piece of paper.  It’s not an exclusive club, there is no Gold Card or Platinum Clubhouse, there are no Air Miles, and there is no secret handshake.  If anything, the “a-ha!” moment that exploded over our heads one day is our secret handshake.

And that “a-ha!” moment should be enough.

Self-(whatever) should be equally accepted, universally, among the entire Asperger’s/autistic community.  Period.  If the “faker” urban legend comes true, then fine–shun that one person for being an asshat.  But don’t shun everyone without a magical diagnosis letter just because one out of 99 (or more) self-whatevered people might be a bad egg.  Because we’re not.  I have my piece of paper, by the grace of something higher than myself.  But not everybody has that privilege.  Their “official” status doesn’t matter one iota to me; they’ll always be my neurodivergent neurosiblings.

Self-diagnosed/assessed/discovered peeps, you’ll always have my support and recognition.  Period.  Your “a-ha!” moment is enough for me, and also for the vast majority of us.  Please don’t let a couple of elitist douchebags derail your spirit.

And with that, I’ve (definitely) said enough as well.  🙂

I’ll proofread tomorrow (lol) 😉

 

 

 

 

 

 

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27 Comments

  1. i hope anna re-blogs this. *this* is the most important entry ive read on this subject. no, i promise im not trying to flatter you. this takes precedence even over making you smile (fine if the two go together, but seriously.)

    would you consider sticking a creative commons license on this one? i hate the no-derivs clause, but id even take by-nc-nd on this one. (if you skip the no-derivs ones, people can translate it into other languages.) https://creativecommons.org/choose/

    Liked by 1 person

    1. Thank you for your awesome encouragement! 😊💖

      I agree with your take on the importance of addressing subjects like this!

      For the cheap seats, reblog permission for personal or actually-autistic (personal or commercial) blogs at this time is always granted. That’s not a hint or suggestion – just a clarification for the record 🙂

      I’ll certainly look into the CC thing 😊👍🏽

      Liked by 1 person

  2. From a self-diagnosed lady who has been sneered at, thank you, thank you, thank you! This is chalkful of such beautiful, supportive stuff I feel empowered to the point of
    ( happy) tears. ❤

    Liked by 2 people

    1. OMG very cool!! I mean, not that you had to endure that kind of (horrid, inexcusable!) treatment, but that this helped you transcend it 😘💪🏼💞🌟

      Liked by 2 people

  3. Great post. Though I do have one slight quibble: bisexuals are NOT welcomed with open arms by all members of the LGT community. We are often treated with suspicion and almos asked to ‘prove’ ourselves, very much like self-dxed autistics in fact. So in that way, I’m doubly disadvantaged!

    Liked by 2 people

    1. i know, theyre a complete set of bastards 🙂 they often throw trans people under the bus too.

      i have nothing but (deep) love for quiltbaggers, but youre still allowed to call people out on hypocrisy and double standards when you love them. ive witnessed them doing it to you/us, im more or less bi/pan myself, and sometimes the “lgbt+” community is really a few communities trying to figure out wtf theyre doing– often forgetting that *everyone* is part of the human race and deserves love based on who they love, not as much who theyre told they can love. (love.) ❤

      Liked by 2 people

    2. Oh yes, thank you so much for pointing that out! It’s a very important point. The same is true for asexual people as well, so I can definitely relate. Hopefully it’s a temporary situation, an intermediate stage along an ultimate timeline of progress. For whatever it’s worth, I wholeheartedly agree with and welcome both/all into the LGBT+ fold. To me, it’s an all-inclusive umbrella 😘💪🏼💞🌺

      Liked by 1 person

    3. No worries my friend! It’s all good. You’d never exclude anyone, that much I’m sure 😘 I totally understand what you meant ❤️

      Like

  4. Great post. Since I personally experienced losing my official autism diagnosis, I realize more than ever that self-diagnosis is as valid as professional diagnosis, since professionals are human too. I was kicked off one autism forum after I lost my diagnosis, even though I’d been diagnosed three times before and only one psychologist (who happens to be my current responsible clinician) says I don’t have autism. I used to be in a privileged position, because my first and second formal diagnosis were done by autism teams. I wonder how these also privileged naysayers would act if they were stripped off their diagnosis.

    Liked by 3 people

    1. ha, as if anyone could ever be un-diagnosed. i know your struggle is real and im not referring to that, but ive been misdiagnosed and thats going to stick forever. a team of 1000 experts couldnt “undo” it if they all made it their life goal. no diagnosis is ever temporary– its simply accurate or inaccurate, relevant or irrelevant. but the effects– oy, the effects of an incompetent “expert” never cease 😦

      i guess you can add the naysayers to that statement– there will always be some tool out there to be a very special kind of wrong. 😦 sorry you have to put up with that.

      Liked by 2 people

    2. Omg I’m so very sorry (and saddened) to hear that that happened to you! I mean, it’s not like your brain got swapped out for a different one! You’re still the same person, with the same (lovely!) “quirks” and beautiful neurodivergent framework as you had/were before! The fickleness of the medical and “autistic elitist” communities is staggering. I know that this doesn’t help the feelings of rejection (and probably many others) that I imagine you feel, but my personal opinion is that they (the group who shunned you) lost out on having an awesome member. It’s their loss. Although I know that you feel like it’s yours, too 💐 I can’t imagine a group like that–the heartlessness! I’m stunned. Dear one, you’ll always, always, always be a fellow spectrum neurosibling to me 😘❤️💖🌺

      Liked by 2 people

  5. Yes. Great (very looooooong post!

    I’ve been self-identifying (my own take on not liking the medical diagnosis word) for around theee years.

    I’m delighted to say that on Thursday, I was ‘confirmed’ by an Adult Assessment team. I’m still, like your wonderful self, pro-self-identification.

    However, having the rubber stamp makes me feel more able to ‘come out’ (using the sane LGBTIQ analogy). And I feel validated and vindicated. I was right!

    Liked by 3 people

    1. Thank you very much!! I love your term “identify”; that’s absolutely perfect!! 👏🏼👏🏼👏🏼

      Congratulations on your assessment thus far!! Is that a firm diagnosis, or a step in the process? If it’s the former, then double-congrats! If it’s the latter, then I hope the rest of the process goes very well for you! 😘👍🏽💪🏼💜💙

      Like

    1. It’s definitely my pleasure, dear friend! 😘💚💙. I had a lot of fun writing it, and I’m really glad you enjoyed it 👍🏼🎉🎊

      Liked by 2 people

    1. Thank you so kindly for your wonderful and encouraging words! I can’t tell you how much I appreciate it (I know that sounds cliché, but it’s true) 😉😘💓🌟

      Liked by 2 people

  6. It was my slowly growng self-diagnosis that triggered the understanding that an official diagnosis would probably help me understand why I had so much trouble understanding for my whole life. Maybe that’s how it is for a lot of people. I spent a great deal of time in fear that I would be found out as a fake. How wonderful to finally feel validated! And there are people bravely saying out loud and coherently so many of the things I’ve been wondering about!

    Liked by 4 people

    1. Awesome!! 👏🏼👏🏼👏🏼. You’re not alone, my lovely 😊 I totally felt the same way, especially in the days leading up to Evaluation Day, and I’ve heard identical sentiment from other amazing blog writers. (If I can remember to do so, I’ll try to post at least the one or two links that I’m specifically thinking of when I said that 😊)

      Like the other blog writers I know, I wondered “omg; what if I’m actually not autistic? Or maybe I am, but don’t meet the criteria strong enough? What if I am but they fail to see it?” Oh man, I drove myself in circles in my final 24 hours lol.

      And yep, validation and vindication are almost universal (from what I’ve seen) in those who get diagnosed as adults. You’ve got plenty of company all the way around! 😘💞

      Liked by 1 person

      1. “I drove myself in circles”

        doesnt that just about define you? on a good day, you drive yourself in circles thinking, and it works. on a bad day its exactly the same, but overwhelming. i know all day today, ive been “more so” that usual. and on other days, less so.

        usually the days i can be myself the most, and people are cool, those are the best days. whats love? love is when sun-girl (or moon-girl) make me feel like i can totally be myself. wheres the love? NO ONE else does more to make me feel like i can just be me. thats love. love is many things, but thats one of the better examples.

        i try to extend the same. i try to give that gift in return. people love being able to be themselves. for a change.

        Liked by 2 people

    1. Thank you very much! I really appreciate that, since I hesitated momentarily before hitting that “Publish” button 😊❤️💜💙

      Liked by 2 people

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