A lot of the behaviors by which autism is diagnosed (social communication, repetitive behaviors and restricted interests) are fairly high-level behaviors, dependent on a lot of cognitive/neural machinery beneath it. There is an idea out there that convergent behaviors that allow consistent diagnosis depends on this, as the resulting behaviors might results from differences in many different underlying processes, but the result at the higher level can be measured the same.
Analogy: Two programs can produce nearly identical behavior at the UI level, but be implemented very differently. Diagnosis operates partly at the "interface" level, but what happens underneath can differ greatly.
Is high-level behavior the only criteria for diagnosis?
I think the majority of the public would like to better understand how we came into this position. There's nothing wrong with the topic of autism as research, but it's been a political football for so long that there are many reasonable doubts about methodology, diagnosis, and relevance to everyday healthcare. I understand there may be complications with some patients that require medical diagnosis and intervention, but does that not imply there should be a much more meaningful label on those cases than just the broad umbrella term of "autism"?
On one extreme, we have people thinking they're autistic when they're actually just awkward and inexperienced in life. On the other, we have people with epilepsy who prefer the label "autism" even though they're merely correlated. Something is wrong here. Not with the science, but the discussion.
Though, to be more specific, it's even moreso about high-level behavior that has a negative impact, which is highly variable, particularly with environment. I think most would agree that this is extremely messy. But is there a better option?
For practical purposes, it makes some sense to diagnose based on high-level behavior and negative impact on one's life. Describing the relevant what rather than the currently-unknown why.
I do think a more granular approach would have benefits as far as treatment and such goes, though. I know a lot of folks with Asperger's diagnoses were upset when that was rolled into autism. I don't think that was the best distinction to be made, but I think it does show that the people with these conditions often aren't opposed to more granularity (myself included).
What’s interesting about this is, as you point out, the “negative impact” side of this is extremely situational - many of the most talented engineers I’ve ever worked with were very much on the spectrum, and within the bounds of the work we needed them to do, they were phenomenally better adapted than the more neurotypical members of the team. We accommodated them instead of making them accommodate us and they were absolute superpowers for our team.
I get the feeling that with a sufficiently advanced understanding of the brain we could attribute every personality trait to a biological explanation, but if someone isn't sufficiently disabled or in need of treatment, is there any benefit to doing so?
The person who possibly is on the lightest side of the autism spectrum has so little in common with the other end that it feels incorrect to label them as the same condition.
"Did we know the mechanical affections of the particles of rhubarb, hemlock, opium, and a man, as a watchmaker does those of a watch ... we should be able to tell beforehand that rhubarb will purge, hemlock kill, and Opium make a man sleep; as well as a watchmaker can" -- John Locke (1689)
On the contrary, autistic people tend to be way too mature for their age, often visibly so. (it used to be called the "little professor syndrome")
It seems to me that's what they actually found - the genes accelerate maturation. Maybe it's just the neoteny fetish of the modern society that makes it feel like a disorder.
> autistic people tend to be way too mature for their age
Appear to be, which isn't the same as "tend to be" because many go from being perceived as "overly mature children" to being perceived as immature adults because they diverge from social norms. Traumatized children also appear to be too mature for their age, and the likelihood of being traumatized growing up as a neurodivergent child is pretty high.
Neoteny makes people immature. Self centered, childish, irresponsible, agressive. It's well known which dog breeds cause the majority of injuries - pittbulls, which are little more than overgrown puppies.
Well, people with epilepsy who “prefer” the autistic label are just people who are wrong. They may be both autistic and have epilepsy. Epilepsy is diagnosable based on observed neurological events and physiology, it does not depend on behavioural observations, a person’s opinion about whether they have it, or a doctor’s interpretation of a self-evaluation (as autism diagnosis often does).
I disagree with you that it’s the discussion that’s off, it is the science.
The problem is that autism is not a clearly defined disorder. Its definition and diagnostic criteria can and have changed, and even then, those criteria are poorly specified.
One thing that I have always found troubling is the “clinically significant impairment” requirement of an autism diagnosis. It seems to me that a person’s level of “impairment” is likely to depend on individual differences and possibly environment and circumstances. To me this seems odd: surely the disorder exists regardless of a person’s ability to manage it? If a person grows up in accommodating circumstances, do they not have autism? What if someone grows up in tough circumstances but later finds more accommodating circumstances, is their autism “cured”? Questions are facetious, but the point stands.
It’s also odd that we see autism so highly implicated in comorbidities with other disorders such as epilepsy, which aren’t dependent exclusively on phenotype observations to diagnose. To me, this strongly indicates that what we call autism today (or some sub/superset of it) likely will become definitively diagnosable in future with improved understanding and brain imaging.
For now, it feels like the diagnostic criteria are actually just guidelines for guessing whether someone is autistic, rather than determining it (especially when it comes to determining what constitutes “significant clinical impairment” and its varying degrees).
To be clear: I definitely believe that “autism” exists and is a disorder that impacts people broadly as described, the challenges are around its definition and diagnosis. I have spoken to autistic people before who have found my views to be offensive, and invalidating of them. That’s not my intention, my intention is to pursue accuracy because I believe with better understanding, we will be able to make sure our public spaces/workplaces/etc. are accommodating to everyone, including folks with different needs.
Diagnosis is not a criminal conviction in a North American court of law. In particular, reasonable doubt -- particularly among casual, non-clinical, self-deputized jurists who don't generally have any insight into the patient's chart, let alone medical qualification whatsoever -- is not a sufficient justification to withhold diagnosis.
In your post, you are leaning a bit too heavily on vibes to do the heavy lifting in making your points. For example, you claim there exist people with epilepsy who prefer to be labeled as autistic, but you don't say how many people are doing this, why they are doing this in a way that doesn't strawman, nor why this is even topical.
My interpretation is that you are hoping the reader will have specific visceral (vibes based) reactions to these facts and the drama of the spectacle you've described -- e.g. "yikes, some morons are conflating correlation with causation/identification and using that faulty reasoning to claim a diagnosis they don't deserve". Please correct me if I'm misrepresenting what you are trying to communicate, it is not my intention
My suspicion is that this is a tiny number of people to begin with, and not an indictment of autism diagnosis in the way you believe it is. In fact, most of the people you seem to take issue with are self-diagnosing. What specific "methodology, diagnosis, and relevance to every day healthcare" are you taking issue with then?
Ok, that makes sense - so ASD is basically that we’ve noticed some prototypical behaviors, which is where the grouping comes from, but it’s possible what we’re seeing is sort of the “carcinization” of mental operating modes - many different pathways into the same output point, which is why the genetic search has been so difficult - that right enough for a non-scientist?
What I know of the brain is that it’s basically a chaos machine - a ton of activity that’s just on the edge of a cascade, a bunch of feedback loops, a bunch of emergent behavior, and it’s kind of impressive we function at all to begin with, so it’s not surprising there’s so many ways to perturb the output behavior.
My understanding is that that's what makes it a disorder - that it's just a collection of symptoms that seem to appear together, rather than something with a known mechanism and cause
Analogy: Two programs can produce nearly identical behavior at the UI level, but be implemented very differently. Diagnosis operates partly at the "interface" level, but what happens underneath can differ greatly.