The post I’ve been holding out on: an open letter to anti-self-diagnosis ‘elitists’

Hang on–don’t get mad yet; just keep reading. 🙂

(Disclaimer: I’ve had two and a half hours of sleep.  Thus, I’ll probably be doing a lot of editing-after-the-fact.  If you’re interested/inclined, please check back periodically for updates. 🙂 )

I admit, I’ve been stalling a little.  This has been one of the toughest posts to work up the courage to write, because I know that some people may come to think it’s directed at them and begin to take my words personally.  Please try to resist that potential temptation, because…

…chances are, if one of us is following the other on Twitter, this post is absolutely not directed at you.  In fact, it’s not directed at any single person in particular.  I have come across a select few to whom this post does apply, but if you’re seeing this on my Twitter wall, you’re not one of them.  So from here on, when I mention “you”, I’m referring specifically–and only–to whom this post is for…


This post is intended for those who irrationally, automatically assume that ALL self-diagnosed (or self-identified or self-assessed; the terms will be used interchangeably) people are either 1) the “imposter/pseudo” Aspie/autistic type that I wrote about in my last post or 2) those who may have tried to “diagnose” ourselves too quickly, without having done a shit-ton of  investigation (as well as considering–and ruling out–other conditions first), and then proceed to be extremely rigid and exclusionary jerks about it.  (And yes, for the purpose of this post, the terms “we” and “us” refer to those of us who know in our heart of hearts that we’re Aspergian/autistic, but haven’t (yet) obtained an “official” diagnosis.)

To make such incredibly broad, sweeping generalizations about a group and stubbornly lump EVERY self-diagnosed person into that group without listening to or considering any evidence to the contrary is not only woefully incorrect, but it can be very hurtful, potentially doing just as much damage (to not only individuals, but also perhaps the autism spectrum community as a whole) as the “pseudo”-type I described in my last post.

I want to state emphatically, for the record and the cheap seats: not all of us self-diagnosed Aspie/autistic people are like that.  In fact, most of us vehemently are not.  Most of us wouldn’t ever even condone that type of behavior.  Instead, the vast majority of us (that I know) have done absolutely everything we can, to be as objective and realistic with ourselves as we can, and we arrived at our spectrum conclusion extremely carefully.  Most of us did NOT stop at a single online quiz and proclaim that “that’s it–I’m an Aspie!”.  None of the people I know are claiming our Asperger’s/autism spectrum classification for attention or to add a little “spice” to make our lives “less boring”.

We only wanted answers.  And in the Asperger’s/autism criteria, traits lists, books, blogs, and many fellow Aspergians/autists, we found them.  (Three cheers for finding our tribe!) 🙂

Some of us were shocked to come up against irrational opposition and elitism surrounding our newfound discovery.

In the poll I ran on Twitter this week (updated 7 Oct 2016) (god, I dread bringing this up, and this is almost assuredly my last post on the poll topic), 98 out of 209 people–or 47%–voted that “self-diagnosis” was never OK.  Really?  Even as a “first step” toward self-discovery and the quest for an official diagnosis?  (In hindsight, maybe it was the “self-diagnosis” wording itself; maybe the “diagnosis” part was taken more literally be some, likely those of the belief that a diagnosis of any kind should only be made by a medical professional?  That (very valid) point was brought up by someone else in the “aftermath discussions”.)

Obviously, I’m well aware of the potential pitfalls of self-diagnosis.  But I repeat: not all of us are like that.  They’re not us, and we’re not them.  To treat us like we’re no different than they are is to make the broad, sweeping, unfair, and stereotypical generalizations that you rail against.

Aren’t we all supposed to be individuals and be entitled to our own experience?

Don’t most of us struggle to be taken seriously as it is?

As a sidenote, if I’m not qualified to diagnose myself as being on the spectrum, then who is any officially-diagnosed layperson to deny me my conclusion?  Even if my assessment hasn’t (yet) been confirmed by a specialist, how do you know that I’m not?  How do YOU know I’m not “legit”?  Right now, I may “only” be self-diagnosed; but if Asperger’s/autism truly is present at birth (which we know it is), then how do you know I’m not correct?  I know myself far better than you do.  You have no idea which traits on which lists/criteria descriptions brought long-buried memories flooding back, or brought tears to my eyes, or made me jaw drop open in amazement that finally, somebody gets me!  I thought, all this time, that it was  “just me”!  Nor are you aware of how many times that happened to me (countless!).

That last paragraph is a moot point for me, as I’m in the semi-unusual position of being a doctor and thus, I have formal training in–and I know my way around–the pertinent subject areas such as psychology and diagnostic criteria.  But it was written in full support of anyone else in a similar situation who isn’t a medical professional him/herself.

In my experience (and this is just my own experience; yours may be quite different, and I completely respect that), most of the self-diagnosed/self-identified Aspie/autistic people are genuine (i.e., “legit” and correct).  We didn’t arrive at our conclusion lightly.  We usually took every assessment we could access (some of which are actually used by the more forward-thinking professionals for “official” diagnosis!) 

And for many of us, unlike the “pseudo-Aspies”, those questionnaire results were NOT “borderline” and thus questionable.  The vast majority of us didn’t even stop at the quizzes, either; many of us proceeded to look up the diagnostic criteria and take a good, hard, and often painful look at ourselves.  We didn’t just “decide one day” that we “possess some traits and therefore, we’re ‘a little autistic’ because that’s the cool trendy thing to be this week and it gives us excuses for all kinds of things”.

Here’s the deal: denouncing the validity of ALL self-diagnosed spectrum people just because of the occasional “bad apple” and treating us like we’re ALL “pseudo-Aspie” wannabes is like throwing the baby out with the bathwater.

By harshly questioning us and denying us our underlying spot on the spectrum, you’re actually contributing to the gaslighting that the entire spectrum community claims to decry.  Suddenly, not only do we have the entire neurotypical world to battle, convince, and navigate (which is difficult enough), we face additional criticism, second-guessing, and doubt from the very people who should be the most understanding, supportive, sensitive, and kind.

It’s hard enough for us that we got missed, for any one (or combination) of multiple reasons.  Gender-bias is one major factor.  I’m biologically female; even today, in 2016, there’s an enormous lack of understanding of how Asperger’s/autism traits clinically present in adults, and females, let alone adult females.

Another factor is age; those of us who are older are at a substantial disadvantage because Hans Asperger’s original observations of Asperger’s Syndrome didn’t occur until 1944 and they weren’t translated into English until 1981.  Asperger’s didn’t even become a diagnostic option until 1994, and it only lasted “officially” until 2013.  Well, by 1994, I was already 16-turning-17, by which time I had learned to “act” extremely well, just to get by.  And of course, since I didn’t flap my hands, rock back and forth, cover my ears and scream, etc, nobody–and I mean nobody–suspected autism (which “only happens in males anyway”, right?)

Some of us would LOVE to seek–and get–an official diagnosis.  But for a variety of reasons, we may not be able to.  There might be an obscene waiting period to get an appointment; what is one supposed to do in the meantime? 

Not all of us live in areas with free or cheap healthcare, either; in some places, those assessments can run hundreds or even thousands of dollars, which very few of us have lying around.  

And many of us may figure that it may not be worth the expense or hassle because we live in places where the supports and benefits afforded to us are nil, and thus, there’s little-to-no “return on investment”. 

Or we’re sick of getting misdiagnosed with some psychiatric condition we don’t have (yet AGAIN), and we’re a bit jaded, fearing or feeling overwhelmed at the thought of taking yet another risk or making yet one more (sometimes insurmountable) effort. 

Or we may be in fear of a diagnosis going on record because we might have a lot to lose in terms of career, public perspective, stigma, family law, etc.  So some of us got missed, and others live in secret or anonymity, self-identifying as the only option left for us.

It has been noted/theorized by many an astute commenter that in some cases of the less-rational, more militant self-diagnosis opponents, there may be racial, gender-based, socioeconomic, and/or disability status/mindset factors at play, which there may or may not be any influence or connection.  Regardless…

Diagnosis is a privilege, in one way or another.  Remember that not all of us are so privileged.

I know I’m not alone; I’ve got plenty of (excellent) company, many other people who share my same situation.  It’s not (even close to) unique.  And again, our lives are hard enough; can’t we trust our own community to refrain from adding to our already-gigantic difficulties and disadvantages?

Denying the more responsible self-diagnosed people our spot in the spectrum community is ableist.  It’s also elitist and snotty.  It makes a lot of ballsy–and reckless–assumptions.  And it’s alienating, hurtful, and ostracizing.  Some of the very people who take it upon themselves to police the rest of the world, vigilantly keeping watch for instances of ableism the most fiercely, are in turn forming their own institution of ableism themselves–and forcing it on (some very good-hearted and sound-minded) people.

Insisting that self-diagnosis/assessment is not acceptable also reinforces the idea that our own thought processes, self-knowledge, and conclusions aren’t valid, and certainly not as valid as those of neurotypicals (AKA allistics or non-autistic people).  As someone poignantly pointed out, blanketly denying self-diagnosis (or self-identity/self-assessment, if you prefer) and refusing to accept anything but an official diagnosis merely reinforces the neurotypical dominance, helping them retain their positions of control as as our gatekeepers.  Are we really that inferior?  Are we really that much less deserving of trust and respect?  Are our impressions of ourselves somehow worth less than what some neurotypical thinks of us (even if they are a medical provider)?

By holding onto this viewpoint at all costs, you’re essentially saying that the Asperger’s/autism spectrum community is incompetent.  You’re reemphasizing neurotypical superiority.  It’s a “Father Knows Best” attitude, and it’s disheartening and often-uncalled-for.  I’m not (in any way) saying that anyone should blindly accept every person who claims to be on the spectrum at face value, with no questions asked.  But how about keeping a bit more of an open mind?  How about giving us the same benefit of the doubt that you ask of the neurotypical world?  That same #AutismAcceptance hashtag could be directed toward you.

Some members of the anti-self-diagnosis crowd go so far as to be extremely antisocial and, at times, downright rude about the issue.  The shunning and the shaming have to stop.  How on earth is the entire Asperger’s/autism spectrum community going to gain any respect or make any progress/headway whatsoever, if we remain so sharply divided, setting ourselves up to be seen as petty, rude nitwits with too much time on our hands and nothing better to do than to snipe at each other and the rest of the world?  We’ll be perceived as butthurt little babies who act like toddlers, and if this is the behavior we demonstrate, then we deserve nothing we’re asking for.  (At that point, we might as well team up with Autism Speaks and let them do the speaking for us.)  Aren’t we better than that?  Aren’t we capable of more than that?  Isn’t that time and energy much more constructively spent on much more pressing issues?  Couldn’t we take that energy and move mountains for–and with–each other instead?

I understand that some of you might have been personally hurt by some spectrum-imposter, and for that, I’m truly sorry.  I’m not familiar with the individual experiences of every person, and there must have been (and probably continue to be) some pretty horrendous behavior on the part of the imposters.  But please–I didn’t do it.  Neither did anybody else I know.  I’m not responsible for the imposters.  I don’t plan to hurt anyone else.  That’s not me.

I (think I) understand (at least some) of your frustration.  People who try to be someone they’re not, just to get attention or sympathy or “game the system” with their manipulation–those people suck, and they always will. 

But that’s who those people are.  They’re bored or they believe they have something to gain.  They’ll pretend to be Aspie/autistic one week and then move onto something else the next.  That’s what they do.  The spectrum community is their Trendy Target of the Week; next week, it’ll be a different group. 

As for us undiagnosed-but-real Aspie/autistic people…we’ll still be here, trying to find our place in the community, long after those pretenders are long gone, having moved on to their next Trendy Target.

So you stubbornly (and understandably and admirably) strove, fought, bitched, and hollered, and got your official diagnosis.  Or maybe you had exceptionally proactive parents or a particularly-astute doctor, counselor, or even teacher.  Maybe there was an especially-decent psychiatrist near you, and you didn’t even have to travel very far.  Maybe your family had the money and didn’t mind spending it.  Either way, you have your official diagnosis.  Congratulations.  That’s called luck, and not all of us are so lucky. Not all of us have that kind of time or money or patience or resilience (to keep going back to appointment after appointment and starting from scratch, from Square One every time, with one ignorant dickhead professional after another).  Your success, more than likely, did not take simple sheer perseverance; if it did, more of us would be diagnosed already (like most of us want to be), and I wouldn’t be the umpteenth blogger to write about this subject.

Speaking of blogging, suggesting that the self-diagnosed should automatically stay silent and refrain from blogging is over-the-top rude.  Really?  You want to silence us and take what is often our our only voice away because, for whatever reason, we couldn’t or didn’t want to get that official piece of paper?  Who made you God?  Who gave you that right?  

Does that official piece of paper somehow make me more autistic than I was before?  Does it magically make me autistic period?  Was I not autistic before?  Can a simple bundle of bleached tree fibers with ink on them actually change my brain chemistry?  Official accommodations aside, does it somehow poof!–turn me into a real human being in the eyes of the “official” autistic community?

By denying all of the self-diagnosed and holding us in a lesser esteem simply because we don’t have the “right” piece of paper from someone with the “right” credentials (who probably doesn’t know as much about the spectrum as we do anyway!)  By doing so, you’re probably hurting (causing real damage to), emotionally traumatizing and scarring, turning off, or pissing off a lot of otherwise-excellent people who probably are true Aspies, many of whom might be future officially-diagnosed Aspies (and who knows–maybe more strongly than you!). And then what…?

What happens when I DO get my official piece of paper (assuming, of course, that it actually happens; I’m trying, but it’s far from a done deal at this point, and I don’t know if I’ll ultimately succeed; there are several barriers, not a single one of which has to do with my confidence in my meeting the criteria themselves)?  Are you going to “like” me more?  See me as more “legit”?  Induct me into a special club with a secret handshake?  Maybe not, after this post (lol).  Maybe you want nothing to do with me.  Like I said, I understand your position; if you claim to be understanding and rational, though, I hope you put as much effort into understanding mine.  I can also agree to disagree; I hope I get that same respect in return.  Live and let live and all that…which is a two-way street, too.

(Again, I repeat: this is not directed at any specific individual(s)–period.  I do know that people to whom this post applies are out there, given the outcome of the Twitter poll.  But if we’ve interacted on Twitter or in a Facebook group, I can solidly affirm that this post is not directed at you.) 🙂

I will probably continue to publish thoughts on the topic of diagnosis as they come to me.  Believe me, there are more, and I WILL write about them, whether the militant elitists want me to or not.  However…

…I’m pretty sure I’ve beaten the Twitter Poll Topic to death.

I don’t think it’s registering any more “vital signs”, at least from my head.

I’m dropping the mic now.

🙂 ❤

peace-sign-by-laura-barbos

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24 Comments

    1. Thank you! Yeah, I thought so, too. Don’t Spe@k 4 Me (a Twitter user; I messed up their handle in case they Google themselves–that way they won’t find this in the search results) is especially adamant about that. They say, “dont spe@k 4 me” and yet they’re trying to intimidate us into not speaking at all! And at the same time, they’re trying to speak for us! More than a little hypocritical, IMHO

      Thank you for your encouragement. I love your comments!! 🙂 ❤

      Liked by 2 people

    1. Oh Wow, thank you for such a nice compliment and for sharing! That’s a heck of an honor coming from you because I think you’re an amazing writer yourself! (No I’m not just trying to flatter you – it’s 100% true.) 🙂 ❤

      Liked by 1 person

  1. I missed all the debate on Twitter etc . Understand what is of concern is those who for various reasons want to add the label of Autistic/Asperger’s to their identity as an accessory of sorts. This can blur and diminish the appreciation of Autism as being a real existential reality that never takes a holiday, it is also insulting to autistics /aspergians.

    This attitude was and is still prevalent in regards to those with ME/CFS, so often called yuppie flu with people recovering from a hard night out saying ” I’ve got chronic fatigue” to go on and run a marathon, play tennis or just eat an ordinary meal…. all of which is not possible with ME/CFS relapse. Real conditions appropriated as excuses .

    It is not fair to create a state of apartheid between the Diagnosed like myself and those who have discovered what lies beneath their life-long difficulties by online or off line non -official diagnoses. Official diagnosis is prohibitively expensive in many countries and those who are not able to afford or find ss shouldn’t be ostracised. However, it can be very distressing when we find that we have been betrayed or manipulated online by feigners.

    Maybe a way around this is to advocate and encourage these non diagnosed people to advocate /lobby their members of government etc and medical institutions/organisations for a more equitable access to Autism Diagnosis… also take many, not just one, online test .. to read reputable books on autism etc.
    Love the Peace Symbol and background at top of blog.

    Liked by 2 people

    1. Thank you! So true; agreed on all points.

      Some people really do add a spectrum status to their identity as an accessory. That is definitely a dark side, and it’s a legitimate concern. Those people tarnish all of us.

      I was also irritated to read about ME/CFS being referred to as the “yuppie flu”; what on earth?? As a doctor myself, I have never doubted people who state they have fatigue. I never brush it off. There’s always a physiological reason. I keep a box of tissues in my office because I know that when we uncover the reason (and we always do–there are usually several at once), they’ll break down and cry in relief. It’s such an honor to share that moment with them. No, they’re never “crazy”, and it’s NOT “just all in their head”. It’s a tragic and too-common tale, too; the reason they cry is in relief and joy, but that’s largely an effect of a far more sinister phenomenon: they’ve been derailed, discouraged, and denied by dozens of other providers, who have failed to take these patients seriously and truly LISTEN to them. I went through that myself in the past, and swore never to do it to anyone. ❤

      I love your way around the spectrum issue! Accessibility to diagnosis is extremely tricky in many areas. Even in places with universal healthcare, the wait lists/waiting periods are entirely too long. Equitable and affordable access would be an excellent start.

      I would like to see the United States follow in Mexico's footsteps and offer a Public Option for healthcare. Not to make coverage *mandatory*, per se (that has proven to be a disaster for many, and even those who benefited or are currently benefiting may see those benefits begin to evaporate, unfortunately), but at least to have an affordable government-administered option for those who need it or could use it. Mexico's system does not discriminate/deny based on pre-existing conditions, either, and it's usable at many hospitals and other facilities across the country. I think that would be really cool to have here, and I think it would go a long way to solving the healthcare problems we face here in the US 🙂 ❤

      Thank you so much for your comment! 🙂

      Like

  2. Its a tricky issue. I have a recent adult diagnosis but before seeking one out I’d been all but certain for years that I had Asperger’s.
    The diagnosis should provide me with a level of workplace protection in the event of another “yes I said do this but everyone else knew I meant do that so the problem is your fault for following orders literally.”
    The drawback with a diagnosis is if I have to testify in court, have a custody issue with my kids, or find a new job and they see an Autism diagnosis attached to me I will very likely be discriminated against.
    I have a strong background working in the pediatric mental health field and at 40 with small kids, the oldest definitely on the spectrum, I needed to know if I had Asperger’s or something else for genetic reasons. Self diagnosis guessing wasn’t good enough anymore because I knew I could be wrong. Otherwise I wouldn’t have accepted the danger of being labeled Autistic after seeing how bigoted the legal, educational, and medical systems are against us.
    This is an important detail to remember before judging people that self diagnose alone. An official Autism diagnosis is in and of itself a danger to the person who has it, and every adult with Asperger’s need not take that risk to live life to the fullest.

    Liked by 3 people

    1. Everything you said is absolutely true and I can identify for sure. Although I don’t have kids, I have often wondered what the ramifications of diagnosis would be in a court/legal situation, whether involving children or something else entirely. I wholeheartedly agree with your statement that it’s risky; many people (especially outside the US) don’t realize that. There’s still a LOT of stigma and discrimination here. I wish you the best of luck, that nothing bad ever happens to you ❤

      Like

  3. Reading your post made me stop and appreciate the comments many at work have made about my “wall of text” emails. 🙂

    In 1994, when a version of autism for those of us who are not intellectually disabled first became a diagnostic option, I turned 29. By then, my life was fairly stable and managed. I had received quite a bit of psychiatric intervention going back to early childhood and including involuntary commitment on “suicide watch” after my second marriage went down in flames as well as a full custody evaluation a few years later. For more than half my life, there wasn’t even an official way to describe me. I might as well not have existed.

    I sought official diagnosis once the possibility came to my attention in no small part because I wasn’t sure it could be true. I needed an independent voice to tell me I wasn’t imagining it. But despite the back and forth in my head, I was pretty certain before my formal assessment. It fit so well. And I’m so late diagnosed, I don’t have any attachment to the term “Asperger’s”. I’m just autistic without any comorbid intellectual disability. I do, however, have the characteristic autistic split in core intelligence.

    I judge people by what they have to say, not what’s on a piece of paper. I screen people out on their attitude and presentation, not on a piece of paper.

    Liked by 1 person

    1. Hear, hear! 👏🏼👏🏼. I love your comments! I’m always interested to hear the perspective of those who have gone before me (although you’re not much older than I am; we’re only about 12 years apart). So yep, I know what it’s like to be different but there not to exist an appropriate term to describe you 😊 And by the time Asperger’s came into being as a diagnosis, I was already 16-17, and by then, I had already figured out how to mask and act, even though I didn’t know that’s what I was doing at the time 💞

      Liked by 1 person

  4. This is one of the best posts I’ve read on this topic and I think it hits the nail on the head. I’d even go a step further and say that each of us has the exclusive birthright to define ourselves and I would venture to say “with no questions asked!”

    I feel it’s really none of my business to have “an opinion” on somebody else’s diagnosis or condition, and nobody is more qualified than onesself to know what goes on inside (not even a medical professional). Being on the outside of another person looking in, that observer, (be they professional or layperson) can only make an educated guess at best, and opinions are by definition subjective “soft science” as there is no definitive lab test for Autism or Aspergers like there may be for certain purely physical conditions. Even the classical evaluation complete with its battery of neuropsych tests commonly administered by psychologists are dependent apon interpretations (which can be wrong, and also can vary from one examiner to another).

    I do not believe people fake this condition (and if so it is very rare). I mean, really! Who on earth would “choose” to be bullied, ostracized, belittled, seen as retarded or less intelligent than the average person, misunderstood on a daily basis, believed not trying, treated like a child when one is an adult, treated as irrelevant, mocked and exploited by ableist neurotypicals, left to suffer or to have procedures or exams forced on us physically by doctors when one is physically ill and not have no mean no in their eyes, to be misconstrued as mentally ill, viewed as unfit parents, willful, rude, calculating, cold, lacking in empathy, or an eternal misfit, tiresome, a burden, and a bore?

    No amount of novelty would be worth all the crap that we have to wade through just to live our lives in this society.

    One would no more “choose” this hard-row-to-hoe (even with it’s positives) than one “chooses” to be gay, black, or a woman, but once we come to the realization it is not something we can change many of us have really no choice but to embrace it, warts and all because what really is the alternative? self-hatred?

    I recently viewed a Youtube video by a fellow Aspie/Autistic who was placed in the position by a commenter of having to defend why she loved herself as she is (even against a child in her family (whom she interviewed in the video) who regarded her with a certain level of disrespect that I’m sure the child wouldn’t dare show to any other grown woman).

    Something about that video just struck me dead in the heart. I felt her pain so much even though she tried not to show it hurt.

    I came away thinking “Where do people get off thinking that they can treat someone that way and that it’s OK? and why are Autistics/Aspies seen as “fair game”; not afforded full status in society that others enjoy when they reach the age of majority?

    And as for those in the community who take it apon themselves to decide who is or is not “legit”, seemingly viewing it as some sort of competition between those with and those without an official diagnosis is really ridiculous!

    I always say; “One should think twice before judging someone else’s authenticity because that shoe can always end up on the other foot one day and the world we build today (for better or worse) is the same one we’ll have to live in tomorrow!”

    The practice of “othering” is a slippery slope, and I believe it is a form of internalized self-hatred projected onto others, the once cast out now doing the casting out.

    Another member of the community said it quite eloquently in her Youtube video; that the once bullied can in some instances become the bullies.

    I thank you, The Silent Wave, for speaking out! Not only is it encumbent apon us not to inflict more pain onto our brothers and sisters, but to take a stand and not to remain silent when we wittness such cruelty done to others. I hope others will do the same.

    This is illustrated quite well in the poem “First They Came” below written by Protestant paster Martin Niemoller ;

    First they came for the Communists
    And I did not speak out
    Because I was not a Communist
    Then they came for the Socialists
    And I did not speak out
    Because I was not a Socialist
    Then they came for the trade unionists
    And I did not speak out
    Because I was not a trade unionist
    Then they came for the Jews
    And I did not speak out
    Because I was not a Jew
    Then they came for me
    And there was no one left
    To speak out for me

    I missed the controversy on Twitter that you spoke about, but I agree with you 100% that such divisiveness in a community already discriminated against by the maojority will not further our cause as a whole.

    Although there will always be differences in terms of a range of perspectives and personalities I hope that people will understand that there is strength in numbers and that to cast such a narrow net on the the spectrum through elitism and exclusionism only makes us weaker in the long-run. We need as large an army as possible to fight the injustices we experience foisted apon us by the neurotypical agenda.

    Liked by 2 people

    1. Thank you for your comment! I agree – SO true! I think that the “pseudo”-spectrum phenomenon is very overstated. But then, I may be biased because A) I never adopted a spectrum status as an “accessory” or “excuse” myself, and B) I’m new-ish to the spectrum community and thus I lack experience/history, so I hadn’t ever experienced/heard of anyone doing that; apparently others who’ve been in the community longer than I have, have indeed witnessed instances of this (I’ve since witnessed a few, although not many, and they are WAY more the exception than the rule).

      I TOTALLY love the “First They Came” poem; it’s one of my long-time favorites! It’s definitely a cautionary tale that everyone throughout the world must keep in mind. ❤

      Like

  5. wow, jus wow. thais is the 3rd post ive read of yours and im in awe. youre not only speakin your own words, but ours, mine.
    i feel like im runnin that hallway with no end tryin to reach that wonderfully “official” diagnosis, simply to receive the extra help i do really need. sure ive made it pretty far on my own, literally alone….but its wearin me down inside. while my dr does agree im on the spectrum, we continue to work solely on my social skills…..so that i can have a better happier life. really? bein actively continually social is whats l gonna make me happy? i was mistaken in thinkin maybe bein able to handle my day (and the full range of things in it plus) emotionally and not bein so exhausted from it i wna even attempt to be social n not sit on my bed in my dark room away from everyone…..blah blah blah i digress…….that would make me a happier more well rounded person. i want to learn how to handle life in a way i feel i can breathe, i want to (even briefly) know how it feels to jus be ok n not be suffocated in bein expected to do things “their” way so i dont appear to be a bother to “their” senses.
    im gna enjoy bein here wrapped in the warmth n truth of your blogs. thank you, like many others ive found online, for the words that can actually soothe that in me that no one around me even cares to understand or believe or accept…..cuz im not “official”.

    Liked by 1 person

    1. Thank you so much for your kind words! I really feel for you; I empathize with your situation ❤

      It really IS tiring to simply make it through the day, a lot of the time. It's really interesting (and ridiculous) how professionals will tell us "off the record" that we're autistic or on the spectrum or that we have a lot of the traits, but then they won't go so far as to evaluate us, and they simply "treat" us as though we're a run-of-the-mill "psychiatric" patient (!) Grrrr….

      I hope that whether or not you receive an official diagnosis at some point, that you are able to get to brighter skies and a very fulfilling life. I hope that even if you don't end up getting diagnosed "officially", that you are able to effectively construct a world for yourself that is high up on the Quality Of Life factor. I hope that any other people in your life are also supportive and understanding. I wish you the very best! 🙂 Please feel free to contact me anytime ❤

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  6. Thank you for this post. I too am self-diagnosed, and have been reading and questioning myself and reading more for the better part of a year trying to decide if I am legit or not. My partner (a professional epistemologist) tells me it may not actually be knowable. On one hand I have the passel of online tests where I am just on the autistic side of the (somewhat arbitrary) line; whole categories of symptoms are either there in spades or not really at all. Am I just a broader autistic phenotype case? But there is so much variation among autistics, and there’s so much that I do have in common with other autistic people. I have Outsider Syndrome because I understand metaphors and sarcasm and can make eye contact. But it explains so much about my life. I have this deep need for a concrete answer, and I can’t seem to accept the liminal nature of my experience. I have heard so many stories about “professionals” getting it so very wrong, and I don’t see why I need a certificate of authenticity when at present I need no formal accommodations (nor bonus prejudice directed against me). But again I come back to it: am I _really_? Such a fear of being a faker, or thought a faker, or of being wrong. Goodness knows if I ever manage to resolve this for myself, I will not want anyone else questioning my sincerity or validity.

    Liked by 1 person

    1. Hi! Wow! Thank you so much for sharing your thoughts! 👏🏼😊

      I know where you’re coming from, and I completely agree! ❤️

      Personally, I look at the autism spectrum as more of a neurological orientation, and less of a pathology; therefore, the way I see it, you could absolutely be of an autistic neurotype, without disability. I see it as a different “operating system” of sorts, rather than some type of disorder with all these impairments. And thus, I think that if you identify with that “OS” and you find yourself nodding and agreeing with what people on the spectrum say, then I would have no problem with accepting you as a full-fledged member of the spectrum ❤️

      Also, some of us act and mask particularly well, and/or have learned to adapt to the rules and guidelines of mainstream society. Or, your particular version of spectrum “OS” simply came with certain “apps” installed 😊 Such as socializing, eye contact, etc. Some of us are even actually extroverts! It’s not common, but it happens, and those people are no less autistic than anyone else–just different is all ❤️

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      1. Thank you for your comforting response. Yes, I really like your comparison of neurological orientation with sexual orientation. Each of us knows what resonates for us. As my first friend I told of my suspicions said, it doesn’t matter. You know. YOU know. For me it would have great explanatory and predictive power; there isn’t really any doubt. Except for that pesky piece of paper that would legitimize my own analysis.

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