How to make diagnoses work more effectively for patients, families and professionals (Split from Science is science, Truth is one)

[MSC]

Hello all,

Thank you in advance for taking the time to read this. 

Everything I'm going to discuss here got started in what can only be described as a bit of a dumpster fire thread, which I feel led to an interesting discussion about autism and psychiatry, in the responses... which were thankfully absent the OP.

To be clear, the OP seemed to believe that autism is a blood born condition that can be cured with bloodletting and hemodialysis. The OP was essentially a snakeoil salesman. 

So rather than really engage with this person, there was a pretty fruitful and calm discussion amongst myself and others (Whom I'll take the time to tag in the comments) about Autism as a concept and what is really meant when people say autism spectrum and what autism is exactly. 

Quote

Just so people are aware of what is meant by spectrum, it is a collection of symptoms and behaviours of which many conditions, neurological and psychological states share a lot of overlap. 

Because of this, many react to words like "cure" or "low functioning" negatively due to a misconception amongst autistic individuals and their advocates to be expert authorities on the "condition" because they or someone they know doesn't fit into certain boxes. 

The two divergent models of disability also plays a significant role in this. Those who's issues lie within the medical model of disability absolutely need effective treatments and cures. Those who's issues lie within the social model of disability require their environments to be treated or cured. To make this more confusing, most of the conditions still have overlap. Hypersensitivity to light is an example often associated with AS conditions. The medical fix may be via optometry and the social fix is accomodating lighting installations. 

I do get what Dim is getting at though and agree with the sentiment. The generalised psychiactric labelling of what is clearly many different conditions, for the purpose of simplified medical signposting is confusing enough for medical experts and downright dangerous in it's invitation to invite public misunderstanding and stereotyping of austism spectrum conditions to the degree where even the sufferers and their advocates just don't get it. 

It's similar to but obviously not as bad as if they decided that instead of specific cancer diagnoses, all medical signposting would say is "Cancer spectrum disorder" and just hope the person on the treatment end knows what to do. Because cancer spectrum disorder could be anything from a small mole to stage 4 stomach cancer or an inoperable brain tumour. 

What many psychiatrists fail to grasp is that the act and implications of psychiactric labelling have broader ramifications than just how they as individual doctors treat them, but how everything outside of the doctors control is going to treat them. 

Just so we are clear, cancer most certainly is a disease and I don't believe autism is anywhere near cancer nor do I believe people with autism are a disease. My criticisms revolve around medical signposting and careless, thoughtless, lazy labels. A cry for more precise terminology is a standard that most scientific fields adhere to. Exhibit A, pluto is no longer thought of as a planet. 

- MSC (from the aforementioned thread)

So there is a lot to unpack and discuss from this; but I'm going to start by making a claim, giving my arguments for that claim and then talk a little bit about what led me to this line of thought (because it's been something I've thought about long before being on this forum.) and be clear on my skin in the game.

Claim

The way we label and categorise different conditions, oftentimes does not work consistently well enough towards outcomes that are positive for patient or care provider, harms a fair amount of patients more than it helps them in numerous ways and the broader ramifications of all of this leads to the field of psychiatry and it's practitioners oftentimes being negatively stereotyped in the public eye, in ways other medical professionals are not, discouraging more people from entering the field itself. 

I have the utmost respect for psychiatrists and psychiactric nusing staff etc. This is in no way meant to disparage or further stereotype anyone. I've known many psychiatrists and only three of them in a clinical setting, I lived with one for a few months also in an airbnb and he's a friend for life. Not to mention a lot of the obstacles that contribute towards mental healthcare inefficiencies are put there by policy makers, lack of investment, pop culture, patients themselves or their families and the general public... general public on many counts, we kind of suck.

Below I'm going to share a publication from The Leonard Davis institute of Health Economics. It's worth a read, touches on a lot of what I won't get into here yet but will in the responses.

Quote

Although the White House, Congress, and state governments have launched various new initiatives designed to improve the U.S. mental health care delivery system in recent years, a panel of experts convened by the University of Pennsylvania’s Leonard Davis Institute of Health Economics (LDI) concluded that, overall, the system is worsening at a faster pace than it is improving.

- https://ldi.upenn.edu/our-work/research-updates/worsening-faster-than-its-improving-the-us-mental-health-care-delivery-system/ 

Now I don't think what I have to say applies to just autism, but I am going to focus on autism as I think the claim most strongly applies to that. 

As I mentioned earlier;

Quote

My criticisms revolve around medical signposting and careless, thoughtless, lazy labels. A cry for more precise terminology is a standard that most scientific fields adhere to. Exhibit A, pluto is no longer thought of as a planet. 

- MSC

Does the word Autism or the phrase Autism spectrum disorder really capture the depth and complexity of what is going on, in a way that gives us a clear picture on how to treat a patient? 

If I ask what is autism spectrum disorder? The honest answer, is many different conditions and they don't all have the same causes. For example when I was 23 I was diagnosed with Aspergers in Scotland, now I live in the USA and it's autism spectrum disorder. My psychiatrist here however doesn't believe I have autism, he doesn't believe I have a personality disorder or ADHD, he just feels I was brought up in a chaotic and inconsistent environment around family members with mental health issues where I was parentified from a young age. (This isn't invitation to make my mental health the subject of this discussion, it's my skin in the game as it were and what prompted me to think about this stuff. Me sharing this is explanation of why the subject, not the subject itself.)

Here is why labelling a bunch of different conditions with an umbrella term, in the case of autism, is really just over-generalising. It's not just a spectrum, it's a spectrum of spectrums and few pick up on just how many we are talking about. Hypo-hyper sensitivity scales, for all 8 (maybe 9, cerebroceptive hypothesis is speculation for another thread) senses. Symptom and behaviour spectrums and within behaviour, motivational spectrums. When I say behaviour I don't just mean what you can see but cognitive behaviour too. 

Now some could respond to all this and say making it more complicated and adding more diagnoses and psychiactric labels will invite more public misunderstanding, not less, sure, that's true. Although I'd ask which is the more harmful misunderstanding? Not expecting a regular person to understand what autism is or to not expect them to understand what classic autism, PDD, Aspergers etc is? How much does that even matter, can you tell the difference and guarantee that the person reading their file can tell the difference and can you explain it to the patients family/employer/school in a precise and clear way?

If I was to try and put this all into a too long, didn't read. I'd just say very simply, some of psychiatries word tools suck. Autism is one area, PTSD is another as are personality disorders.

Switching out complex terminology in a complex situation for something simple, is like removing pieces from a beautifully engineered piano, and expecting it to still give out a crisp clear note. An engineer will tell you that the simplest most efficient design to get the job done, is the correct one, what that doesn't mean is a simple design always works. It's always as complex as it needs to be to do the job it needs to do. A piano isn't just a hammer hitting a string. Psychiatry shouldn't use hammers to hit patients either... literally and figuratively. 

Probably haven't said everything I could have said and I could always say some of it better, but I will see how people respond and where folk want to go with this discussion. 

Be excellent to each other and party on dudes. 

Btw I'm discussing mental healthcare in the USA and the UK as my frames of reference but if the boot fits your nations mental healthcare then by all means share. 

[dimreepr]

9 hours ago, MSC said:

Does the word Autism or the phrase Autism spectrum disorder really capture the depth and complexity of what is going on, in a way that gives us a clear picture on how to treat a patient? 

If I ask what is autism spectrum disorder? The honest answer, is many different conditions and they don't all have the same causes. For example when I was 23 I was diagnosed with Aspergers in Scotland, now I live in the USA and it's autism spectrum disorder. My psychiatrist here however doesn't believe I have autism, he doesn't believe I have a personality disorder or ADHD, he just feels I was brought up in a chaotic and inconsistent environment around family members with mental health issues where I was parentified from a young age. (This isn't invitation to make my mental health the subject of this discussion, it's my skin in the game as it were and what prompted me to think about this stuff. Me sharing this is explanation of why the subject, not the subject itself.)

The problem isn't with the label or the generalisation per say, I think the word disorder does quite a lot of damage in and of itself; for example, I was watching breakfast tv on the beeb recently, a mother of an autistic child was describing how her daughter liked to sit behind the drive when she's on a bus, and when she's comfortable with a situation she stimms (I can't remember the nature of her stimming). The driver was spooked by her behaviour and asked them to move, the mother explained that that's not really an option and why, but he just slammed on the brakes and angrily demanded they get off. 

I think it's entirely plausible that the driver's reaction was driven by fear of the word disorder, bc the news was heavy with a guy suffering from a schitsofrenic 'disorder', that has killed 2 or3 people recently.

[MSC]

6 hours ago, dimreepr said:

I think it's entirely plausible that the driver's reaction was driven by fear of the word disorder, bc the news was heavy with a guy suffering from a schitsofrenic 'disorder', that has killed 2 or3 people recently.

Definitely plausible, I can see however how some forms of stimming could be distracting for a driver. You do hit upon a good point, there is a kind of general blanket behaviour people adopt towards individuals with any psychiactric condition that is reminiscent of behaviour a person takes when they believe a person is psychotic, no matter what the diagnosis actually is or to what degree it affects them. They get guarded, wary, frightened, standoffish and even aggressive. Because when they hear disorder, they can only conceptualize that as "crazy and dangerous".

Where autism is concerned there is a small minority of individuals who recieve the diagnosis and engage in criminal acts. Of those, some don't know what they are doing or fully understand right and wrong, while others clearly are using an incorrect diagnosis as a potentia shield from consequences or accepting responsibility. This is an area of overlap that I was talking about earlier via motivational spectrums. An example is that narcissism and some forms of autism share symptomatic overlap to some degree but motivationally and cognitively they are different behaviours.  Dunnings krueger effect hits narcissists hard and they fool themselves into thinking they are great at things they actually suck at, so they then obnoxiously brag about it and how good they are at something or how awesome they are and if they fail there is always an excuse and a deflection of why it wasn't their fault. I know of an individual who is classicly autistic, who knows a lot about buses and bus routes in Edinburgh and he's very proud of that and sees it as a hobby. He can sound obnoxious when talking about it and praising himself for it, but for him it's not an attempt to get attention that's just how he socialises and believes people are meant to have conversations. With conditions like aspergers and ADHD the motivational and social differences are more subtle than that in terms of narcissistic behaviour. Sometimes you can't tell without spending enough time with a person to see how they talk about not only things they are good at, but how they react when they perform badly or make a mistake. If it's not crystallized narcissism and they are just overzealous about their strengths and values, they'll be capable of acknowledging mistakes and poor performance and will have a shame or defeat response that is very different to someone suffering with a Narcissistic personality.

You're also correct about the term "disorder" in the cases where capabilities are differing and context dependent. Take the friend I mentioned earlier, he'll never be able to give consistently good social advice but anyone lost in Edinburgh and doesn't know which bus to get, is currently experiencing more disorder than he is. Then you have the pandemic and the lockdowns and again you can clearly see that a lot of the people with social "disorders" handled it better than most who weren't considered disordered.

Hell, I consider anyone who isn't capable of walking for over an hour while having two capable legs and isn't morbidly obese, disordered. When I say capable, I mean that if given the time to make either choice, walking/saving money/using less fuel loses to I'll just take the car for an 5m drive for something 30 minutes away on foot. 

I am curious though; when do you feel like the use of the word disorder is justified? For example let's imagine I'm a person diagnosed with ADHD as an adult and I believe my life is disordered because of my condition, maybe I can't keep friends or a job or give up some vice. If I self identify myself as having a disorder, and am not pointing to anyone else and saying "They have a disorder" and I'm only saying "I have a disorder." How would you respond to that?

6 hours ago, dimreepr said:

The problem isn't with the label or the generalisation per say, I think the word disorder does quite a lot of damage in and of itself;

What I will say to this is that this issue has many problems in it, a few of the problems are with the labels and how we label. The linguistic composition of a diagnosis is something we are both highlighting in different ways. 

[dimreepr]

On 4/1/2024 at 7:05 PM, MSC said:

What I will say to this is that this issue has many problems in it, a few of the problems are with the labels and how we label. The linguistic composition of a diagnosis is something we are both highlighting in different ways. 

The problem is 'them' and our liberal use of the word, much like the me2 and black life matters campaign's. It's not about the people who point and say something hateful <insert an ism> (they're easily dismissed), it's about the people who insist that they can't be an ismist, because they like one of 'them'...

On 4/1/2024 at 12:45 PM, dimreepr said:

bc the news was heavy with a guy suffering from a schitsofrenic 'disorder', that has killed 2 or3 people recently.

BTW This guy has been punished as if he knew what he did was wrong, lucky for the bus driver they weren't killed when they disembarked... 😉

[CharonY]

There is one thing that always strikes me as odd and where the cancer analogy might fail a bit (though it depends on the level of detail). Often, in the discourse anything in the autism spectrum is set apart from the "normal" population, in part using quantitative measures.  This of course requires to set a normative standard and to complicated things, the measures within the spectrum categorization are notoriously hetereogenous. There are attempts to better characterize individuals to better understand population heterogeneity without pre-assumption of what is normal, which, in my mind, would be a better approach to try to identify categories.

There of course challenges to this approach and in the area of medicine it has been sought after for so long that in the academic community folks have rebranded it multiple times to keep it relevant (and I have been long enough around to recognize the same argument, even if the newer generation think that they discovered it for the first time). Many of these terms (personalized medicine, precision medicine, normative modeling) fundamentally recognize the heterogeneity within a population and seeks to find the level of detail to provide better diagnoses or treatment, if necessary. It also tries not to predefine categories by being more data-driven. Obviously, it is also way more challenging and the current flavour of research is to add machine learning or AI to it. 

[dimreepr]

18 hours ago, CharonY said:

There is one thing that always strikes me as odd and where the cancer analogy might fail a bit (though it depends on the level of detail). Often, in the discourse anything in the autism spectrum is set apart from the "normal" population, in part using quantitative measures.  This of course requires to set a normative standard and to complicated things, the measures within the spectrum categorization are notoriously hetereogenous. There are attempts to better characterize individuals to better understand population heterogeneity without pre-assumption of what is normal, which, in my mind, would be a better approach to try to identify categories.

There of course challenges to this approach and in the area of medicine it has been sought after for so long that in the academic community folks have rebranded it multiple times to keep it relevant (and I have been long enough around to recognize the same argument, even if the newer generation think that they discovered it for the first time). Many of these terms (personalized medicine, precision medicine, normative modeling) fundamentally recognize the heterogeneity within a population and seeks to find the level of detail to provide better diagnoses or treatment, if necessary. It also tries not to predefine categories by being more data-driven. Obviously, it is also way more challenging and the current flavour of research is to add machine learning or AI to it. 

Nice post +1

We just hope AI can fix them for us, it just seems like "A brave new world" and is wrong for all the same reason's, different strokes for different folk's....