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.
This is one of my more popular posts!