How pragmatically useful/precise is a spectrum diagnosis?

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I wonder sometimes.

When I have my meltdowns, and people look at me strangely because I didn't process a social cue normally, it's a pragmatic explanation.

However, since so many people still think autism=mental retardation, it confuses them that I graduated cum laude with a degree in English, excelled academically and never needed Special Ed, and can take care of most everyday tasks and my hygiene just fine.

It reminds me of Jon Niednagel's Brain Types system, in a sense. I was really into his system for a number of years. He takes the Myers-Briggs 16 categories of type and tries to connect them with mental and motor skills to make it more concrete and practical. Certainly not an issue in and of itself, but you are bound to find variation, even among people with the same type. And regrettably, Niednagel in recent years has more or less resorted to stereotypes in defining type. He really is biased toward his own type, ISTJ/BEIL, which he thinks is much less common than Myers-Briggs stats insist (3% or less, per his insistence). And now ENTP/FCIR, the type he thinks makes up 50% of all humanity (despite Myers-Briggs results indicating this type is only about 5%), has become immoral, liberal, Hollywood, unable to analyze or discern logical or verbal reality, and ruining society for the supposedly less common and more upstanding ISTJs like himself. He goes out of his way to disparage the ENTP type now. I cannot support his system any longer because of it. It's not so much about brain science anymore, but a guy going out of his way to insist that this category of people is a 'problem,' much like NTs view autistic people. It's no different, and every bit as bad, as the Myers-Briggs communities, full of self-proclaimed 'introverted intuitives,' bashing the extroverted sensing types as more common and dumb.

The problem with categorizations like this is no one fits all of the stereotypes perfectly, and the human brain is ingrained to think in terms of stereotypes whether we like it or not. And to engage in us vs. them mentalities.

So resulting from all that, I find myself torn with the diagnosis and label. In some cases, it is pragmatic and precise, and helps explain why I react differently to some situations compared to others. But other times, it can seem like a crutch, or a stereotype, and can mislead or confuse people rather than clarify things. And people can get divided over it.

I look forward to the day when our categorization systems can be more useful, precise, and accurate for each individual so as to avoid confusion, and also to make people more sympathetic and less arrogant toward those who fit 'different' categories altogether, no matter how common/uncommon, statistically.

Thoughts?

In school/college-based settings, it's quite useful.

Within an employment context, not so much.

There is a concerted effort to make the diagnosis more "precise"---but it really is not an objective diagnosis as of yet. Diagnosticians frequently make "educated guesses." There is no one laboratory finding that confirms autism.

Yeah that's always been a challenge for me to deal with. There are no neuroscientific markers for it -- basically you checklist a bunch of symptoms, and a shrink decides whether or not you have it based on that. Not empirical or exacting like, say, knowing whether or not you have COPD, type 1 diabetes, and such.

This is what makes psychiatry so problematic. It's a soft science, not a hard one.

That’s true. Wouldn’t it be nice if we could simply get blood work done and then know what we have?

With that being said, my neuropsychological evaluation was pretty thorough, and there were different ways that she checked validity. It involved multiple appointments and assessments.

I still find myself doubting the diagnosis sometimes, though.

OP, I very much enjoyed reading your post! My PhD is in the hard sciences so I'm not very knowledgeable in your areas, but I'll share these thoughts:

The devolution of Dr.? Neidnagel from exploration to self-promotion seems to happen fairly often - in my field too. Stereotypes are "easy". In fact, when I was an undergraduate I remember the exact moment, and where I was, when I realized that many of my classmates chose to be stereotypes, because it was easier and less frightening than self-discovery. ("I'm a jock." "She's a nerd." "He's a juicer.") I suspect this is the source of many a midlife crisis and much bigotry as well.

Back to your initial question: in my case, my diagnosis was extremely useful.

I was diagnosed while working for a thug - in terms of personality, not occupation. Said thug was a blatant, even flaunting, serial abuser of staff. She would target one person and torment them, overload them, withhold key information and resources from them, humiliate them, etc. until they broke down, melted down, took extended sick leave, or self-harmed, at which point she would fire them.

I obtained my diagnosis just as she was targeting me as her next entrée, and I did seek it for strategic purposes. Once I had it, I slammed her and her management with it, hard. Thankfully, the doc who diagnosed me was willing to support and help protect me - I understand that's rare. With his help, I was able to survive long enough to find work outside that department, with someone who actually liked to have Aspies on staff. Which meant I was able to retire safely. (Which I did at the earliest possible moment.)

So my diagnosis was about as pragmatically useful as humanly possible, but I know my case isn't typical. Still, I'm extremely grateful for my label, and I hope this has been as entertaining a read for you as your post was for me.

I certainly feel that a more multi-dimensional approach is needed for autism, and probably other neurological developmental conditions too. I have benefited from my formal diagnosis; it has enabled me to access support which I wouldn't have been able to otherwise and gave me the confidence to join communities like this one. However, as suggested, I am pragmatic about this; my diagnosis acknowledges that I have a condition which requires support, and in general terms I agree with its conclusions; but I have reservations about how accurately it describes me and the assumptions that it makes about the condition itself.

I have long seen autism as a category rather than a distinct condition. My personal opinion is that the social difficulties associated with autism are a secondary effect; we are not wired with faulty social circuits, it is just that our sensory and cognitive processing is sufficiently unusual that constructing models of another person's mind is made more difficult (and they ours, of course.) There may be many different kinds of processing difference which lead to the development of very similar kinds of social problems, very similar anxieties, and a very similar tendency towards overloading of the brain (burnouts, shutdowns and meltdowns.) In that sense, I think the current formal diagnostics are measuring secondary effects of developing with our sensory and cognitive differences, but not so much the causal differences themselves, making us look more homogeneous than we really are, and the use of functioning and support-level labels reinforces this perception.

A general category similar to "autism" may well be a useful one; but a person who struggles socially because of language deficits may require very different support to someone who finds socialising over-stimulating to their senses, and different again to someone who's social difficulties are mainly caused by alexithymia. Even if support-levels are meaningful for estimating the amount of support required, they can't be used to deduce what forms the support should take. Not making these distinctions could also lead to misleading conclusions from research aimed at finding better kinds of support. My biggest disappointment with my assessment report, which is very thorough about the diagnostic evidence, is that it has been of so little use to to me or to other professionals in working out what to do next.

Pragmatically, though, "autism" has led me to places like WP. But once I'm here my concern is the with the problem, subject, silly joke, etc. that's the subject of the thread. Good advice is good advice whatever label or "level" a poster might have; there's enough commonality that we're able to support each other, so I think it would be silly to let the labels become divisive whatever categories we use.

Good replies, analysis, and discussion.

Where I live, psychiatrists can diagnose no matter what, meanwhile psychologists need the checklist. So, it can be pretty useful, but I haven't gotten it down on paper, just doctors saying I have it, AND the person who diagnosed me told my parents about 5 years earlier that I didn't have it. You figure that logic

Yes, a very good point, there isn't yet any concensus about the best diagnostic tools and best practices for diagnostic assessments. Mine took a psychologist, an occupational therapist, multiple interviews with me, and an interview with my Mum (they had also obviously studied my medical records well.) A friend diagnosed in the same town not long before me, had a single interview not much more than a hour long with just a psychologist. He has "Asperger's Syndrome" (ICD-10), whereas I have "ASD Level 1, no intellectual delay, no functional language delay" (DSM-V). So just how comparable are our diagnoses?

I have struggled somedays with the diagnosis but not long after something would happen and then I'd be back in agreement that something's awry about me in a not so simple way.

It's dawned on me, the fact that if I went to 10 different psychologist- I likely wouldn't nominally be the same person by each and every one of them. Leads you to some difficult ideas about your identity.

I understand the struggles of other autistic people more than most and vice versa; we're just a large sub-race. While not being able to taxonomically object myself has led to some insecurities, the overall diagnosis has granted me some peace and purpose.

I've been hoping for blood tests for autism for a while, was almost excited about those premature articles earlier this year about tests in the UK.

This is not just a problem of psychiatry. There are challenges with the diagnostic categorization of physical conditions as well. You mention COPD as an example. I have breathing problems that onset in adulthood. Some symptoms are consistent with asthma and some are consistent with COPD. This has led to different diagnoses at different times. Further complicating matters, the symptoms are plausibly consistent with yet a third lung condition. To definitively determine which condition it actually is, one would need to examine my lungs during an autopsy, which for obvious reasons is not a direction I am pursuing.

Categorization is simpler when dealing with infectious diseases. They more easily fit into groupings because each infectious disease is caused by a specific virus or bacterium (or something else) that has invaded the body. By contrast, there will always be challenges categorizing non-infectious diseases and conditions. They involve something going wrong (or something being different) with the functioning of one’s own body. And what goes wrong or is different in a body doesn’t necessarily have to align neatly with pre-specified categories.

I do agree that subdividing and categorizing the symptoms of ASD and related conditions has been especially challenging. The usual value (for healthcare providers) of creating diagnostic categories is: (1) simplification of complex information, and (2) development of evidence-based standards of care tailored to a diagnosis to guide treatment decisions and protocols. At the moment, I don’t know that the category “ASD” supplies either benefit efficiently.

I don't think usefulness and precision are necessarily bedfellows.

I have lots of problems with Myers-Briggs. From my perspective, the most important is that I don't actually think the four categories in question are "special" enough for differentiating between them, rather than any of the other facets of personality, to be more meaningful. In this conversation, I would say that trying to categorise people using four (or even eight!) dichotomies is unrealistic. People don't divide neatly into introverts and extroverts, people don't divide neatly into thinkers and judgers, and so forth.

Maybe we could come up with a whole lot of different categorisations of autism - how much you value routine, how much you value interests, how repetitive your conversations are, whether you are better with written or spoken word, and so on and so forth - and create a few dozen different sub-types of autism or even separate conditions. We could have Wing's Syndrome, Frith's Syndrome, Attwood's Syndrome, Gillberg's Syndrome. I don't think that would do much to reduce confusion; people would simply find it difficult to keep all these syndromes straight in their heads - just as I couldn't tell you the difference between the (wildly different) personality disorders, for example. You'd still need to explain your precise circumstances each time.

There would also be a lot of diagnostic confusion. Diagnosticians struggled when we had three autism spectrum disorders (which is essentially why AS and PDDNOS were abolished), and they still struggle to tell autism from ADHD, anorexia, BPD, and other conditions. If anything, we need further consolidation and a broader understanding of the spectrum.

Finally, when dealing with something as complex as a person, nearly all categories are continuous. Replace "autism" with "autisms" and you haven't replaced a spectrum with discrete categories, you've replaced a spectrum with many spectra. No two people with "Frith's Syndrome" or "Autism Type XVII" or "Autism-Q80-S35" will be the same or exhibit the same symptoms, just as no two diabetics exhibit exactly the same symptoms; indeed, diabetes is diagnosed on a spectrum too!

Ultimately, rather than trying to impose precision onto the world, we need to educate about the spectral nature of the world, and autism specifically. Teach people that autistic people can be very different. This approach is broadly working, and I don't really see any reason to row back on it.

So what I'm getting from this post is this; there are lots of very different roads that could potentially take you to destination of autism. Sounds about accurate to me. I personally believe that my social difficulties and difficulties with change were almost entirely to do with a deficiency of working and short term memory.

According to This paper, where children in the 10th percentile of working memory (not on the basis of any neurological disorder) were assessed on their performance in various areas, it should be noted that they often did poorly when it came to flexible thinking (as assessed by their teachers), seemed very distractible, and, academically, struggled most with numerical operations. For some reason, and I can't explain this, going through this paper, especially with the "older age group" subset, brought back all kinds of memories...

Moving onwards, there's one sentence in the DSM-V that particularly bothers me when it comes to diagnosis, and it's this one:



This sentence is very problematic for me, because the length of time between social demands exceed[ing] limited capacities and masked by learned strategies in later life could be very short, possibly less than a year.

Sorry about the double post, but I just did a quick search and found this on Understood.org. Seems likely to me that executive disfunction alone can cause trouble with socialising.

A year? I would say it could be almost instantaneous. One could be using learned strategies to pass for NT just fine, and then someone one wasn't expecting to see (and didn't want to see) walks into the room, and suddenly social demands are exceeding limited capabilities.

But I guess I do know what you mean. There's both the short term and the long term. That happens once and you've got a situation that you can't easily handle, but that situation ends soon enough and then you're fine. But if that happens many times over a long period of time, then the stress builds up to a point where any little thing can set off a meltdown or shutdown.

I think Giflegolas is talking in terms of the lifespan, not day to day situations. The DSM 5 acknowledges that certain symptoms may not be fully apparent until a child gets old enough to encounter more complex social situations. At the same time, it acknowledges that one can develop coping strategies that will henceforward mask symptoms. So, if you hypothetically have a child who is Level 1 ASD, their symptoms may not be completely apparent until they are a bit older (e.g., age seven). But if that same child were to somehow quickly learn a successful coping strategy (say by age eight), then their ASD would have been apparent for only a year. Before or after that one-year period, it would be hard to diagnose the child because at least some of the symptoms of autism are being hidden.

My guess is the authors of the DSM 5 would say that a child who essentially never has their ASD symptoms fully unmasked is one who doesn’t warrant an ASD diagnosis. Per the DSM, it is not enough to have characteristics aligned with ASD. They must also cause severe impairments in major domains of life. If a person has Aspie characteristics but has figured out how to deal with them so successfully that there are no impairments in daily life, then (per DSM 5) that person is not diagnosable with ASD. But as evidenced by the stories of many people here on WP, things don’t always work out so cleanly. One can develop coping strategies sufficient enough to make it look like one does not have ASD, but still end up having a lot of problems and spending a lifetime trying to understand the reasons for them.