Well, obviously I’ve been on a “diagnosis post kick”. Please forgive me for doing this. I do have a lot of thoughts on this one single topic, and each thought has taken a life of its own. In fact, there seem to be a lot of (different) thoughts on the subject, not just from my brain, but from those of other people.
Over the past few weeks, there’s been a lot of conversation flying, both on WordPress and on social media such as Twitter. There are a lot of really valid viewpoints on (almost) all sides of this conversation. Unfortunately, there’s also a lot of anger, intolerance, and inflexibility. There’s also some borderline-instability and even misogyny. But there’s also a lot of love and support, too. Gotta take the bad with the good, I guess…
But anyway, a while back, I got to thinking…
Just how “objective” is an official diagnosis of Asperger’s/autism?
We’re coming to realize that a lot of people (especially adults, especially females, and especially adult females) are getting missed. going for years (or even decades) without our Asperger’s/autism being realized, getting slapped with wrong diagnoses that miss the point and don’t “cover” everything we’re experiencing. This tragedy is not exclusive to females, however; it’s happening to the guys, too. I met one today. The word “unfortunate” doesn’t cut it; it’s heart-breaking.
There’s also a flip-side; I’ve run across people who claim to have been officially diagnosed as Aspergian/autistic who clearly don’t display the traits. No, I’m not qualified to make a ruling either way, as I’m not a specialist in this area. But it’s pretty apparent within the first few minutes of interaction. They have “issues”, for sure, but I’m betting it ain’t autism.
Yet, (they say) they have been diagnosed. This leads me to wonder who diagnosed them, and what credentials does that diagnostician have?
It takes a lot to get a medical license (I should know–ugh). But I’ve seen too many of these “questionable” people and heard too many “other” “stories” from others about professionals (in multiple countries) simply seeming to hand out autism diagnoses. Apparently there are certain guidelines (link to Medscape article; just scroll down to “Assessment Recommendations” section) that these professionals should be following when evaluating someone for Asperger’s/autism. These guidelines include a psychological evaluation, which I’m not sure some people have gone through as part of their diagnosis. A few people out there might be getting an official diagnosis when they’re not actually on the spectrum at all (!)
This is dangerous, because it compromises the integrity of the system. What’s even more dangerous is that by granting an Asperger’s/autism diagnosis to someone who is not Aspergian/autistic, but may perhaps have a mental disorder or instability (such as severe anger, etc), this can seriously damage people within the autism spectrum community, as well as shed an unfair and inaccurate negative light on the spectrum community as a whole.
I’ve witnessed some very irrational and immature behavior from people who claim to be autistic; behavior that appears within the realm of the neurotypical world.
Personally, I’m pretty tough to rattle. I’ve got a thick skin. I’ve taken a lot of abuse and I’m lucky in that I’m strong enough to stand up and stare them down. (I will absolutely not fault anyone for not having that strength or desire; not wanting to or being able to stand up to that kind of crap doesn’t mean those people are weak or in any way lesser. It’s not a character flaw. I’m just lucky is all. Not better.)
An Asperger’s/autism diagnosis, on its face, is very objective. Specific criteria must be met. “Symptoms” reported and observations noted. It’s like going down a checklist; check, check. So far, no problem.
But the ability to actually relate those criteria to the actual real live person sitting across from that professional is another story; that can be very subjective. That professional might miss an important clue–or conversely, read something into the criteria that isn’t actually there. These mistakes result in false-negative and false-positive diagnoses.
I’ll take a moment to define the vocabulary for those who aren’t aware:
- False-negative – the person has the condition, but is told they don’t.
- False-positive – the person doesn’t have the condition, but is told they do.
In the end, the diagnostician on the other side of the table is human. Humans, of course, aren’t infallible. They make mistakes. Some are honest/genuine mistakes, where they’ve acted in good faith, but despite their best efforts, they were wrong. Other mistakes aren’t so forgivable; some professionals are lazy. Others have a vested interest in one agenda or another. Others are misinformed, to the point where they really have no ethical business issuing these diagnoses, but they’re legally satisfactorily credentialed to do so.
My own PhD psychologist with diagnostic authority even said, “whether or not one meets the criteria is ultimately subjective.” Basically, it’s a judgment call. And sometimes, those judgment skills are lacking, whether that professional was simply “off” that day, or it’s an ongoing problem.
It’s a mess, or at least, the potential is there for it to be.
What gets messier is when the false-positively diagnosed people mistakenly believe that they are a part of a community that they’re not. And they pack their other baggage with them, and proceed to attack or snipe at real members of that community.
But even my own diagnosis, like all the others, hinges on a judgment call that ultimately employs a certain amount of subjectivity that I mentioned in my last post. That can’t be helped, because we can’t just hook people up to diagnostic computers (like we can with cars) to see what’s going on. It takes another human to assess us, and we have no choice but to put a certain amount of trust in those people as we hand over our lives and let them peer into our minds, brains, hearts, and thoughts, as we answer their questions and sit with them on their turf. That’s just the way it is. And it’s scary and risky.
And there’s always a chance that that professional’s subjectivity (or bias or error) might get in the way, rendering us the wrong diagnosis.
Sometimes we get missed, when we’re really Aspergian/autistic after all.
And other times, others get included, when they’re not even on the spectrum.
As much as we’d like to hang our hats on the medical profession and worship their judgment call as the infallible last word and final say, they’re people who make mistakes, too. They’re not always right.
I don’t have a solution, other than to band together as a unified community and compare notes, so that we can steer each other toward the better professionals and away from the less-competent ones…if we choose to submit for a formal diagnosis at all (and if not, to include, support, and recognize each other anyway).
Not everyone wants to unify or tolerate, though…
Stay tuned for the “hate mail“….