Saturday, July 17, 2021

Self-Diagnosis with Checklist Criteria: the Big Five and ASD

When I was a kid, my folks said I was a little slow to warm up to people and sometimes needed a nudge to interact. Then, in grade 11, we all had to do this really long test, filling in stacks of Scantron-type cards with our answers, which were fed into a giant computer that generated reports for each of us, which required a specialist to come in to interpret. The upshot of it all? I'm introverted, an INTP, and I should consider a career as a minister. Then twenty years later, I went to grad school and took a course in Carl Jung, including his typology. We were given a test to do, on paper, which was sent away to be carefully analyzed by a specialist. I got a 30 page typed report in return that said I'm still an INTP, and that can't predict my career goals (assuming it can is a fallacy of affirming the consequent*), but it can help me understand and accept why I need so much alone time, why I struggle to notice the mess I leave in my wake in a way that my partner (ex-partner) finds inexcusable, why I'm good at getting stuff done, and why I'm so scattered. This was a special privilege, getting this 30-paged report, offered only to us because we were taking the course. But another twenty years went by (damn, I'm old!), and now anybody can do these tests online and find out all about themselves. And it's FREE!!!  

Some people say the Myers Briggs is like a horoscope, and I completely disagree because it's not arbitrary. It gives you back a label - a word - based on very specific information you give it, and then it explains it back to you, and you say, "Wow, it sounds just like me!" But of course it sounds like you because it's what you just told it!! If you say you like a lot of alone time, then it will spit back an "I" for introverted and tell you you need time to recharge after being with people. (And I'll never understand slagging Myers Briggs while also lauding the Big Five, which is clearly an extension of it. Baffling.) 

BUT here's the thing: if you're remotely introspective, you can skip the test entirely and just look at the criteria at each end of the four or five continuums to figure out where you fit!! Yes, it means there are just 16 Jungian types or 25 Big Five types, but keep in mind we're each in the different place on each continuum; few people are at the very ends of more than one of them, and we all present differently. So there can be just 16-25 general types of people who are all very different and individual in their own special ways. (A lot of the names need an overhaul, by the way.) If you aren't good at knowing yourself, then ask close friends to help, or take a minute to do the test. There are tons of them online. Here are the continuums.  
  1. reserved or introverted  <-->  outgoing or extraverted   (low to high extraversion)
  2. practical or sensing  <-->  curious or intuitive   (low to high openness)
  3. critical or thinking  <-->  trusting or feeling   (low to high agreeableness)
  4. impulsive or perceptive  <-->  organized or judging   (low to high conscientiousness)
  5. calm or laid-back  <-->  high-strung or ambitious   (low to high neuroticism)
The whole point of typology, according to Jung, is understanding yourself better, accepting your very individual way of perceiving the world, and then also working on understanding and accepting why other people are different from you. So if someone's bugging you about not chitchatting enough, you can whip out your label and explain, "Yes, well, I'm pretty introverted." And that's okay! Take a lesson from Keanu:

But that's not really what this is about. 

What I'm really on about here is that it currently costs over $3,000 to get a professional test to get an official diagnosis of ASD or ADHD or any other neurodivergence. I believe we can get to a time where we're able to just take a FREE test online and be on our way, and I'd like to hurry that up, please. The tests already exist online in spades, but they don't count if you need any kind of accommodation. You have to pay the money. Ableism much?

Similar to distinguishing ends of a typology continuum, with ASD for instance, there was a time we'd notice differences and maybe say, "This person's a little off," then (if we're good people) we'd make whatever changes to our dynamics that seemed necessary to communicate effectively. Then specific criteria came out to give us a name for it, followed by specialists with hours of testing to justify the costs, and a 30-page report neatly typed out describing all the things that you, and maybe a couple teachers and parents, already said you do. I've gone that route with two of my kids and the professionals ended up telling me exactly what we all already knew, but now it's official, and my kids are allowed to get a bit more time to do things. No other accommodation has ever been provided, and no strategies to develop skills to work with these differences in order to meet peak productivity deemed necessary in our culture - or skills to cope with living in our fast-paced society - have been offered despite the hefty price tag. You just get the label on an important piece of paper. And you're supposed to renew it every few years or it doesn't count anymore, as if ASD goes away.

But the criteria for ASD, as for ADHD, is just a checklist of characteristics that, if you're self-aware enough, or if your parents/teachers/friends know you well enough, you likely will be able to just look at to see if you fit with enough of them that it "counts." They're right there in the DSM-5, but I love the way C.L. Lynch, at NeuroClastic, writes them like this to better illustrate that it's a spectrum of different ways the brain works. You need to check most of them, in some way, to fit the label. If you just have one or two, then it's something different, so, no, we're not all a little autistic:

That link also has a few examples of the ways different types of people, with the same label, can present in very different ways. (ETA: This video is also great at explaining the symptoms.) Lynch explains the uneven skill sets of autistic people with Ido Kedar's words: 
"Temple Grandin is unable to read people, thinks visually, speaks, and needs no 1:1 support to get on with her life. I am the opposite. I have great insight into people, think in words, can't speak to save my life, and need 1:1 help. . . . I shouldn't be processing human speech, according to some. I shouldn't be writing my thoughts. I shouldn't even have thought. Well, I say, go listen to Beethoven's Ninth Symphony and imagine writing it deaf and try to be a little humble about the brain's unknown capacities."
I'm more like Captain Holt, from Brooklyn 99, able to read people well, but unable to match my own face and tone to my internal experience, and able to mark a stack of essays in a single bound. If you read through the descriptions of each criteria and could think of your own examples that fit with almost all of them, then I just saved you three grand! Well, unless you want support with anything.

When I was teaching hybrid this year, and the class next door to me had kids practicing skits in the hall while I was teaching online at the same time as caring for the students in front of me, I couldn't do it at all. As soon as the hallway noise started, I'd completely stop talking as if suddenly rendered deaf-mute and just stand there awkwardly silent a few minutes, aware and embarrassed by my behaviour, then snap out of it long enough to give the kids a work period, renouncing valuable class time. This has been an ongoing issue, but my former and current principals won't stop surrounding me with language classes who are uniquely privileged with noisy hallway use during class time. Instead, I self-accommodated by using up 20 sick days to teach from home until the next lockdown saved me! And I went to a board-appointed therapist in case documentation was needed for being absent for more than 6 days in a row. Now I'm already stressing over what September will bring, and I'm considering getting officially tested to show what I already know in order to actually be accommodated so that I can be the best teacher that I can be for the sake of my students. But what a pain in the ass!! People shouldn't need a PhD in personality test assessment to show how closely their own experience of themselves matches diagnostic criteria.

In school, many students don't have an IEP but clearly have some kind of difficulty demonstrating learning that should be addressed. We shouldn't ignore that regardless a lack of IEP, if we're worth our salt, even though it's accepted and legal to demand they conform to an arbitrary set of timelines we've created. Similarly in life, some people are a little different and need a little more help to get engaged in a conversation, for instance. Do we need to know a diagnosis to lend a hand? Except outside of the classroom, when we take off our cloak of professionalism, they might be written off as a dud or weird. People don't stop being cruel when they grow up. People with ASD sometimes need explicit descriptions of behaviours and instruction on more appropriate behaviour if what they're doing isn't getting them anywhere, and that happens in schools as it does for all students, BUT in the real world, who are we to say what's appropriate anyway! Maybe taking ten minutes to answer a question is better than talking over each other! 

Hannah Gadsby has a great interview where she explains one concern for naming differences because, "Labels stop people from being curious about people who are different" (at about 6:30). When it comes to understanding ourselves and each other, it can be a useful shortcut, but it definitely can also prime people to see you in a certain way, to suddenly start talking more slowly or in a condescending baby-talk tone. Or people explain away ideas or actions as if they're all because of it, which can be dismissive, like explaining away anger as hormonal instead of justified anger; being reduced to the label can lead to the opposite of being understood as it sets up an expectation of certain behaviours. And wouldn't it be nice if people could just see everyone as a bit different and not force them to prove that they have a very specific difference, but, instead, just have some patience and support! Maybe don't tease them about it either, but, you know, just give them whatever little thing they might need to in order to bring forth their best self, even if it takes an awkward conversation to find out what that is. Geez!
I've written about autism before: "Do Labels Matter?" and "On Continuums" and "On Being Weird"  and "On Categorizing Behaviours and Abilities," But it was this Twitter thread that the ever insightful Pete Wharmby (@commaficionado) wrote last June, followed by my hellish time at school this year, that inspired me to write yet again:
"What's the impact of communication issues on #autistic people over time? / #Autistic people seem to lack the instruction manual for social communication. Non-autistic folk seem to have this software pre-installed and, for the most part, negotiate communication with little drama. We #autistic people tend to struggle. / As it's all very 'manual' for us, social communication takes way more energy and leaves many of us exhausted. All the short cuts, automatic bits and cheats that non-autistic folk enjoy are all very much hard manual labour for us.
I'll give you an example. / Someone says 'good morning' to a non-autistic person and the response is automatic and probably sincere and warm. A 'good morning' in response. / For an #autistic person, chances are things will go differently. / If our hypothetical #autistic person is having a good day and is feeling energetic, they may access one of their social scripts they have memorised for such occasions. However, this isn't guaranteed. A moment of doubt and everything spirals. / It can end up being an internal version of the conversation between Gandalf and Bilbo Baggins at the start of the Hobbit: "What do you mean good morning? Do you mean you wish me a good morning or that it is a good morning whether I like it or not?" / Of course real life flies by at quite a pace so by the time our #autistic friend has decided how to respond without making themselves look presumptuous and foolish, the stranger is half a mile away. A combination of manual rather than auto, and over thinking, scuppers all. / But this situation is relatively low pressure and low stakes. This kind of thing happens for so many other social communications over the course of a day. An #autistic person may well experience many similar issues in a short span of time. / Sometimes the miscommunication is much more severe, but again ultimately a result of a lack of automatic meaning-recognition software and over-thinking to compensate. Conversations with bosses, partners, colleagues can be fraught with error. /

But imagine (if you're not #autistic - if you are, you won't need to imagine at all) that this is a constant feature of your life. Every conversation you have has the potential to lead to painful miscommunication and divergence of purpose. / Eventually you're going to dread these moments. Eventually you will have a fatalistic sense that any conversation is inevitably going to lead to conflict. Eventually you become traumatised by the repetitive failure and subsequent fallout. / This won't be obvious, high alert trauma, I don't think. In my experience it's very low level most of the time but it is chronic, and it gets worse and worse as time passes. As you get older and the failures pile up, it gets more severe. This is my world. / Every conversation is approached with caution. Everyone who starts a conversation with you is a potential source of pain and unhappiness. The fact we #autistic people seem to generally lack that social handbook of 'how to do it' has long lasting effects. / Some #autistic people won't experience this, of course. It's no monolith. But many will, I think, recognise the feeling.

I have ended up hyper defensive and reluctant. I can still easily speak in public but my ability to 'chat', even with close friends, is deteriorating. / A lifetime of communication problems leads to a lifetime of chronic anxiety and fear around socialising, which exacerbates existing isolation problems many #autistic people have to deal with. / Unfortunately I have few answers for this. There's no easy fix. But being more self assured in our diagnosis and knowing that these errors are likely and even inevitable might help make it feel less serious. / Similarly treating miscommunication lightly, being unafraid of admitting to a non-autistic person that we are unsure of their purpose, would go a long way to removing some of the pressure. / But this relies heavily on awareness and acceptance - the two big issues in autism advocacy that people like me push for day in, day out. Help by sharing my stuff and that of others to help shift things."
If we want to help people to avoid mental health issues later on, it's absolutely imperative that we better  understand and accept our differences. We can do this with just a little more effort and a lot more compassion, and it shouldn't cost anyone anything in the process. 

Works in progress, indeed

If the tests must be administrated by a professional and continue to be necessary for any kind of accommodation, then, at the very least, they have to be made free and easily accessible or else, once again, it's only the wealthy who will get the help they need. Or is that the whole point?


* How is saying that the Myers Briggs can predict a career that best suits you actually fallaciously affirming the consequent? Like this: 
P1. All Ministers who love their jobs are Intuitive       
P2. You're Intuitive                              
C.  You'll enjoy being a Minister.

P1. M > I
P2. I
C.  M  --> affirming the consequent!  (i.e. invalid bullshit)

ETA: the Myers-Briggs and the DSM, both, are not unlike the three Ayurvedic Doshas - intrinsic tendencies that can cause problems if they're not fully understood: Vata (wind - lots of energy but scattered), Pitta (fire - systematic ambition, but dogmatic), and Kapha (watery - methodical but slow moving). And, like Jung explained, the idea is to accept the benefits of your own type of being and then find ways to work with it to be the best you can be. Each type is good at some things and bad at others (like the beaks of different birds). The key to success is understanding what you can capitalize on and what needs support. The three doshas are about 3,000 years ago, then the four humours came about 500 years later with Hippocrates. It's all more or less the same idea: we're all a bit different in fundamental ways. We need to understand ourselves and accept these core attributes in order to help ourselves better integrate with the world. 

ETA: Dr. Nicole Lee Schroeder wrote an excellent series of tweets about this below (edited slightly to un-tweetify it):

When people critique self-diagnosis as a valid practice they misunderstand the relationship between medicine, diagnostics, and medical training. As a historian of medicine this is endlessly frustrating to me, so here's a thread on the history of diagnostics. Until the early 19th century turn to empirical training, which took off in France, diagnostics didn't actually matter all that much. Doctors generally claimed that their patients were sick from imbalanced humors (black bike, yellow bile, blood, and phlegm). Some claimed that patients were sick because of an imbalance between the body's liquid and solid parts (known as solidism), others claimed imbalances from nervous excitement, but on the whole the idea was that an imbalance was happening and needed to be remedied. Regardless of the theory the doctor believed in, the treatment was the same - bleed, purge, give an easy to digest diet, and slowly restore the body to stasis. It didn't matter what disease or medical condition you had, so coming to a particular diagnosis didn't really matter. 
This changed in the early 19th century with the rise of statistics and empiricism. There was an assumption that doctors could gather enough facts about patient habit, lifestyle, and background to define what exactly sparked the imbalance. And so in the early 1800s you see all these new criteria for diagnostics and medical terminology popping up in medical textbooks and student lessons, but the majority of it is based purely on observation and is, quite frankly, wrong. And so medical professionals begin writing about all of these specific medical conditions, with specific signs and symptoms, with specific therapeutic interventions, and with specific prognoses (aka expected outcomes). But at best these diagnostics are guesses. Because medical professionals have yet to figure out germ theory, they've yet to understand genetic inheritance, and they've yet to acknowledge the impacts of dangerous living and working conditions. But the process of arriving at a diagnosis looks eerily similar to that of today. Doctors are instructed to gather data on patient life, to investigate personal habits, to ask about work and family life, and they're explicitly trained to view patient testimony with disbelief. In fact doctors are expected to interview family members and household laborers to try to uncover secret details that the patient refuses to disclose, and somehow then the professional is able to piece all of these facts together into a clear diagnosis and prognosis. Keep in mind this is happening less than 200 years ago. 
All of those diagnostic categories are essentially thrown out or revised about a hundred years later, and since then they've been thrown out, revised, and recycled countless times. For two hundred years doctors have been making guesses, often bad ones, that nonetheless make sense when you consider the scientific theories and tech available to them. And so it is incredibly narrow minded to believe that we are not still doing the exact same thing. Diagnoses are not perfect. They are not stable. They change every time we find a new marker or test or develop better tools for testing. Diagnoses change frequently as new professionals lay out updated criteria based on the newest available information. But in the end, doctors today are still fumbling with diagnostic categories in the same way that doctors did in the past. The medical profession absolutely is uncovering new conditions, disorders, and diseases all the time. And as our environment changes and we face new challenges, of course this challenge will be endless, and as we develop new tech and tests all of our criteria will change as well. And so it's ridiculous to me that some people think that medical diagnosis is proper science. Getting a diagnosis from a doctor gives a snapshot at a moment in medical history. It doesn't tell the embodied experience of a patient. It doesn't convey what the patient might need, or the resources they could secure, or the knowledge they have about their own bodies. 
When people self-diagnosis they are doing the exact same process as medical doctors - gathering data, looking over tests and biomarkers, soliciting interviews from patients with the suspected condition. In fact they're doing more science than most doctors. And they're often doing better science. They're looking at huge patient communities. They're collecting and reading targeted information and going through up to date literature. And they're claiming knowledge about their own bodies that doctors cannot and will never hold. Self diagnosis is just as valid as medical diagnosis; the only difference is the criteria by which we judge our cases. There are plenty of "rare" diseases defined by clinical assessments alone, that have no real tests; the only difference is who is doing the assessment. The medical community does not have a monopoly over the ability to make empirical observations, to gather data, to research patterns, to speak to patient communities, and to come to conclusions. The science is flawed, no matter who is doing it. 
The real question is: why are patients seeking answers treated as if they are incapable of practicing these basic approaches to science? And why is formal medical training treated as the only way of truly knowing the body? Self diagnosis is valid, it's understandable, and it literally saves lives. To treat patients as if they're incapable of this work or uninformed is to stake a claim that power and privilege over care and knowledge belong to medical professionals alone.


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