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whalesalad

Autism is still wildly misunderstood. It’s a big label on a very very big bag of diverse symptoms.

I don’t know how any reasonable scientist could gatekeep something so amorphous and loosely defined.

You can take a child to 4 different doctors and they will all diagnose “autism” differently.

It stands to reason no one knows the truth. We are all just making this up as we go along.

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Honestly this is a massive problem in the psychological sciences. Most of the disorders are just collections of symptoms without any solid research tying those symptom collections to concrete issues in neurological circuits or biochemical signaling pathways. Work is being done to fix this, but its currently an absolute shit show in my opinion

> Most of the disorders are just collections of symptoms without any solid research tying those symptom collections to concrete issues in neurological circuits or biochemical signaling pathways.

This isn't true for autism, ADHD, bipolar or schizophrenia since some biological mechanisms are understood (even if these labels aren't perfect), so what are you talking about and what do you base it on?

Our knowledge of schizophrenia is primarily based on what medications alleviate the symptoms, this is something I learned from pharmacology and biopsychology textbooks. Same with ADHD. Autism, I'm not aware of any solid research pointing to overarching mechanisms so please do cite some if you are. I would love to read it.

Just because some symptoms are alleviated by a medication does not mean that must be related to the underlying mechanism. Many times medications are altering symptoms far removed from the initial cause.

Under the "mechanism" section in wikipedia there are multiple theories discussed: https://en.m.wikipedia.org/wiki/Schizophrenia

The illnesses you mentioned are misdiagnosed all the time. DSM-V is a joke and so are most mental health professionals. They’re just fitting a list of symptoms to another list of symptoms based on what amounts to Levenshtein distance.

Anyone can be diagnosed with ADHD these days. And for all intents and purposes the patient might have 9/10 symptoms. But do they really have ADHD or is it something else? We don’t even have the capacity to figure that out right now because our understanding is so limited.

True. A friend of mine got diagnosed with adhd and it was like 15 questions( mostly the same kind) et voila adhd.

I got adhd since a kid and i the test was the same. Only they asked the parents and not me. But i think i rly got it…

Its like the south park episode where kids got diagnosed because the bible bored them…

If you want to, you can spend 2 or 3 days and $5000 to get properly assessed by a neuropsycholoist to figure out what your issues actually are. That is laborious, time consuming and doesn't fit the 15 minute doctor visit medical billing model, so it comes down to a 15 question screener test for many.

Living in germany i got good healthcare and did allready some deeper analyses as a adult and its apartantly adhd. In the first message I meant as a child the test was not enough. But thank you for this hint :)

Often this deeper analysis is done on children and the 15 minute thing a quick initial screener :)

I had a bunch of assessment in early childhood but I didn't figure out what exactly my set of issues were until I got assessed by a very good neuropsych later in life. I really wish I knew about this stuff in late childhood, would've explained a lot more! It's also sad that there are not many good neuropsychs out there and it's hard to evaluate who is good for most people.

One thing for the other intelligent people out there, your intelligence can often mask that you are not performing to your full potential, because it compensates and makes you perform 'good enough'. Unfortunately our medical system is more orientated towards fixing the people who's lives are in a mess vs people who are just OK, so those who hobble along often don't get the help they need. Sometimes wish there was an equivalent of doctor that focuses on making people perform their best vs. good enough sometimes, kind of like a coach.

And if you think diagnoses are bad, wait 'til you see what passes for treatments.

Saying most mental health professionals are a joke is perhaps a little harsh in my opinion, after all they are trying to understand and treat the most mysterious and complex things known to man.

We don't diagnose diabetes with a list of symptoms because we have a lab test (where we have picked an arbitrary value, but that's another story). We have no lab test for add. That is frustrating, and I think that adhd is probably overdisgnosed, but I think most are doing the best they can.

Not only is the diagnostic framework a joke, it's the basis of immense amounts of iatrogenic harm [0]

[0] "Anatomy of An Epidemic", Robert Whittaker

probably lying to get amphetamines, which enhance performance

A steelmanned accurate take is that they are not biologically objectively confirmable. Which is more of an actual problem in psychiatry than other areas of medicine. Looking at say past x-rays and noting a tumor that went uncommented upon at the time on malpractice lawsuits for instance.

But notably also not done the majority of time in practice. It is seldom done to the level of say verifying your flu strain, let alone other more expensive and/or invasive tests which do not serve the patient's medical needs.

Maybe you should start by telling us what you are talking about.

Yes! Exactly! Is there a name for this phenomenon?

I don't think it's the answer you're looking for, but it's basically how I think about the scientific process: we ask all the wrong questions when we have the wrong mental models and the wrong vocabulary. But as our understanding improves, and as our vocabulary begins to map to the real world better, we start asking better questions and this unblocks science from progressing.

Laying the tracks while the train travels down them. Absolutely agree with this. Some of us are better at connecting the dots than others. More literal/concrete people get stuck in the published or established wisdom and have a tough time thinking “outside the box”

This is why its important for us to consider a broad variety of perspectives on a problem and to change our own perspectives. It's a complicated problem and its easy to get stuck on something that seems "almost kinda right enough that it sorta works"

Maybe they should split it into more specific categories.

Like we don't just say "you have heart disease".

In DSM-V they did the contrary. In DSM-IV, things like Asperger's, PDD-NOS, etc existed. Now, with V, it is all under the same umbrella: ASD ('Autism Spectrum Disorder' in short 'autism' or ASD).

I'm not sure why, but I know there was discrimination going on. People looking to e.g. headhunt idiot savants or high functioning autistics with Asperger's.

The DSM is ... well, it's a many-purpose compendium, but one of them is diagnosing people to get them a starting point. For insurance claims, for looking for specialists, etc. But it's certainly not in itself an expert manual. (While yes it is, but it's really not. Because it necessarily has to exclude the outlier cases, so it intentionally limits its own scope, focusing on the most common symptoms, and general descriptions of them. Which is very hard for psychological phenomena.)

And it was because it seems those are all caused by the same underlying biology, so they are the same disorder with differing levels of severity in their symptom categories. (Social/language and restricted repetitive behaviors.)

To add to the above, my understanding is that classifying autism spectrum disorders into subcategories (eg aspergers) didn't seem to provide much benefit and it made things more difficult to understand. At this point all of our limited interventions are similar and are focused on strengthening social skills, which applies whether you have aspergers or pervasive developmental disorder.

This may change again if we find benefit in subclassification (e.g. a treatment that benefits aspergers patients only).

Personally, I like the idea of reclassifying things based on biochemical mechanism. Not that this is any small undertaking, as we need to understand the mechanism that leads to the symptom(s) and develop some sort of reliable test for them. This goes for all psychological issues though, beyond just ASD

It's sort of a self reinforcing problem though - a lot of studies trying to understand biochemical mechanisms are taking our existing subpar labels at face value. They generally don't have the sample size to get remotely close to detection of the probably double digit distinct disorders that are making up the "Autism" group. And that is further complicated by natural heterogeneity found even in control groups.

Personally I think coming up with better behavioral characterizations will be an important intermediate step to identifying bio mechanisms, because it leads to much more tractable lines of questioning. For example, we could be quantifying symptoms like rigidity and repetitiveness of movement, sleep quality, sensitivity in different sensory domains, etc. - which should be increasingly feasible to do at scale these days.

How would you go about treatment for illnesses that have no known cause?

There are illnesses where we have a known set of symptoms, a known progression, and known treatment options, but have yet to discover the underlying set of causes. You may be able to reliably diagnose, and treat, without understanding the mechanisms at play.

You're not going to be able to work with the bureaucratic side of the healthcare system without being able to say what they're being treated for. Those treatment options can be approved for one illness and not another, even when they share symptoms, because of known efficacies.

Having a name to call something helps, even when you have no idea about the mechanism at play.

That's a good idea but nobody knows the mechanism for most brain diseases. When they know they say something like "you have a lesion in your right parietal lobe."

Yes but that is why researchers are actively working to change this. We are aware of the problems, but the system we're dealing with is large and complex.

It takes time and effort to learn about the mechanisms, just because we don't know right now doesn't mean we never will.

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