How objective is an official Asperger’s / autism diagnosis?

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“….

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14 Comments

  1. A friend I’ve known at work for the past quarter century shared a joke once that’s stuck in my mind ever since.

    Q: What do you call the person who graduated last in their medical school class?

    A: Doctor

    🙂

    Everyone is human and humans have varying levels of skill and usually their own set of biases and issues, so it’s even more complex than that. It’s conceivable that that person could, as a result of their own specific combination of abilities, turn out to be the best doctor in that graduating class. But it does point out that out of any group of people in any profession some will be good and some probably will not be.

    As you say, we aren’t computers or machines so there’s a degree of subjectivity in just about any complex medical diagnosis. We’re still so much in the infancy of understanding our brains and minds that diagnoses involving them are even more subjective.

    That’s why I worked as hard as I could to find a place that actually seemed to understand autism in adults and seemed to have pretty good background. During the initial interview where I made the decision to proceed, my diagnostician was very forthright and honest. She told me that if I was fine with my life, handling everything well, and just appeared curious she would tell me it wasn’t the time to go further with a full assessment. And she was also clear that she would give me her honest analysis of the results. I wasn’t paying for her professional assessment and interpretation, not for any particular result. (Which is what I wanted to hear, but it was reassuring for her to state it up front.) And she went through possible results. It could be ASD. It could be the new social communication disorder. It could be something else like ADHD or anxiety disorder. Or she might not find anything (beyond the catch-all Axis 1 adjustment disorders) that met diagnostic criteria.

    And while subjectivity is inevitable there are diagnostic tools to help support those subjective elements. For instance she had both my wife and me complete multiple standardized questionnaires. The most basic one was inconclusive (unsurprising since I’m not a child) but the more complex autism one indicated possible autism from both of us, with my wife’s actually scoring higher than mine. (The third one was to check for other possible disorders.) She administered an IQ test because there are some results that are commonly seen in autistic people and very uncommon in the non-autistic population. And my result followed that pattern. In fact, it was pretty extreme. I’ve never particularly trusted IQ tests because I was given so many of them as a child and the results were all over the place. Turns out they probably tried so much at new schools (when I was at them for any length of time) because my results didn’t make any sense in the 70s. And on one assessment, I showed a particular failure to retain verbal information on first hearing that could have indicated ADHD Inattentiveness but she also administered a computer-based standardized test for attention issues and I did fine on it. So all those tests and markers supported her subjective opinion and the things I reported in the interview process.

    But yeah, while I’m confident in the process she used and her report, false positives and false negatives are inevitable. And reading a lot online, my autistic expression appears to look more like the female phenotype than the stereotypical autistic male phenotype. I’m not sure the two phenotypes are dramatically different under the covers. It does look like what is sometimes called the female phenotype comes with more deliberate, intentional effort at masking. And I certainly hit that in spades. It could be that it’s mostly been people who couldn’t learn to mask effectively as a child, for whatever reason, who have been diagnosed in the past. And I’m sure gender bias fits in there somewhere as well. It tends to be pervasive.

    Anyway, good thoughts as usual. Thanks for sharing!

    Liked by 1 person

    1. Thank you ever so much for sharing what you have to say! I’m finding that, too–that those who are better at masking are the ones who get missed more often. I’m also very interested in learning more about the male and female phenotypes; I’m wondering if my partner is the female phenotype (I’m definitely the male phenotype; the combination would certainly be interesting! 😂).

      The diagnostic process is certainly subjective. It has definitely gotten better, but since humans developed it 😊 and our understanding of this stuff is still in its infancy, we’ve still got a long way to go. But that will come with time 😊💖

      Liked by 1 person

  2. Spot on. I got a negative in one diagnostic assessment and a positive in a second diagnostic assessment. I value the opinion and credentials of the second assessment a lot more than the first as I went to the National Autistic Society top consultant to get my second assessment. Rather than some local psychiatrist who steadfastly refused to hear the female aspergers traits that I matched. But false positives and false negatives will abound until we have a genetic test. I’m lucky my son is stereotypical in his autism as it seems they like the male stereotype best in the NHS in the UK.

    Liked by 1 person

    1. Very true! Part of me hopes that there will be a genetic test available in the future, but only if it could also be guaranteed that it wouldn’t be used with mal intent (genocide, early termination, etc) 😊 I really appreciate your perspective! 💜💜

      Like

    1. Thank you so much for the reblog! 😊❤️ I’m sorry for being embarrassingly late in thanking you 😳; I’m reviewing the blog and playing catch-up on comments and reblogs that had slipped by 💖

      Like

  3. I think you hit the nail on the head a while back. It is all pretty much what you know in your bones. You KNOW you feel at home with ASD, so that is all that matters.

    I knew years ago that my fractured arm wasn’t just a fracture. I knew my bruises were a tad too severe and due to my clumsiness. I knew my periods were hell8sh compared to other girls. I knew my wisdom teeth extraction sites were not supposed to bleed for 5 days. Something was wrong. It wasn’t til my youngest was diagnosed with severe haemophilia 10 yrs ago that ANY MEDIC thought to question my slightly abnormal bleeding patterns. Even now, my mild haemophilua is still a ‘nothing’ to the medical community.

    Moral of the story? You know in your bones who you are. Enough. Medical science is highly subjective and prone to as many interpretations and judgements as the hadiths have been put through. Believe in yourself – you know.

    Liked by 1 person

    1. Oh wow! Thank you for sharing your story! I’m so relieved that you listened to your gut. Your moral of the story is very true, and you gave a lifesaving example 💜💞

      Like

  4. I used to work in a lockdown pediatric psychiatric hospital. I loved watching our psychiatrist during staffing when he was briefed on the new patients.
    “Multiple personality disorder? Schizophrenia in a six year old? Autism, bipolar, and PTSD overnight in this boy I’ve known for five years? Who did this diagnosis?” He often threw files across the room in disgusted anger because the answer was always the same, the patient’s brand new general practitioner who had at most three months of psychiatric training in his or her ten years of training.
    Any doctor can diagnosis any condition but never trust a proctologist to know a damn thing about brain abnormalities and vice verse no matter what the quack says.

    Liked by 1 person

    1. Wow, thank you for sharing your experiences from such a unique perspective! I’ve never worked in such an environment, and I’ve always wondered what it’s like. I love that psychiatrist’s response! It’s unfortunate that he had to respond that way in the first place, but I’m glad he was so passionate about the kids. I’ve found the same thing–GPs are often grossly inept diagnosticians. The average chiropractic physician actually gets more diagnostic training (!) 😱 Thank you again for speaking up about this ❤️

      Like

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