> The researchers discovered that a small number of biochemical pathways are responsible for the majority of these changes, which could help inform new early detection and prevention strategies for autism.
It won’t. Autism is a socioculturally bound diagnosis, not a single disease that exists in biology. It’s a label for those perceived by others in a certain light, defined in such a way that two with the same label can have remarkably little overlap in terms of observed behaviour. You diagnose autism based on how people act, not who they are. Any biological markers for autism are politically suspect as it would imply those without those markers are invalid, while also raising the spectre of eugenics for those with the markers.
More likely and productivity it might eventually REPLACE autism as a diagnosis with something scientifically valid and treatable, as if somebody displays no autistic behaviours as a result of treatment of a metabolic disorder, why diagnose them with autism?
Autism has clear physiological differences in the brain. It's not just a personality difference. People like to call themselves autistic when it's just social awkwardness, and some doctors might even improperly diagnose them, but these are separate from the condition.
>People like to call themselves autistic when it's just social awkwardness, and some doctors might even improperly diagnose them, but these are separate from the condition.
What makes such a diagnosis incorrect when various forms of social awkwardness satisfy criteria A and D of the diagnostic criteria [1], and all of the criteria for social pragmatic disorder[2]? In the DSM-V-TR era psychiatrists are instructed to not just judge somebody to not be autistic if they do not appear socially awkward, and to additionally ask if they find social interactions distressing, and observe them for longer in more naturalistic settings to find the deficit in social functioning[3] as part of a thus far continuously lowering diagnostic bar as to what is considered sufficient social awkwardness to be diagnosable.
>Autism has clear physiological differences in the brain.
Which physiological changes in the brain make you autistic, or put another way, which physiological changes in the brain must you lack to NOT be autistic? I've heard of any autism diagnosis's and self-diagnosis's and I've never heard of any of them being based on a brain scan and yet people go around calling others and themselves autistic. I've never heard of a diagnosis being lost or gained due to a brain scan.
I've heard this insistence that we can infer the territory, the neurological conditions of peoples brains, from the map, the behaviourist diagnosis, and there may be a correlation but it can't be said that any given person with an autism diagnosis has any given specific neurological change. The only thing we test for IS behaviour, and infer biology from it.
Diagnosis for autism is complicated because some people act the same as people with clear physiological changes, but without those changes.
This puts medical boards in a sticky situation where they have to be inclusive since there's not enough research to say the latter group are definitely not autistic.
I'm in the camp that you shouldn't diagnose an issue without clear physiological or chemistry differences, but I'm not in control of the medical boards. I think we all agree that you shouldn't self-diagnose.
You cannot self-diagnose, and only a trained medical professional can diagnose autism. By trained medical professional, I mean an autism expert who is either a therapist (PHD, PsyD, LMFT, etc.) or a psychiatrist.
Most people who use terms like autistic, bi-polar, sociopath, narcist, etc. are using the terms incorrectly.
Also, I suspect you are correct that most ASD diagnoses do not use brain scans and rely on a trained professional's judgement and observations. That fact does not mean that autism does not exist or that some autistic people may have physical differences from neurotypical people.
Here’s hoping. Autism is pure hell for some families. Unless of course self-declared leaders of the ‘neurodivergent community’ declare such efforts to be genocidal, modern eugenics, and so on.
Relatedly, I was struck to see the recent breakthrough in curing congenital deafness condemned by members of the ‘deaf community’ on Twitter. So we unfortunately have good reason to expect the same kinds of folly here.
I've seen the same protests among certain deaf communities and it baffles me that someone would oppose a cure to what is obviously a medical condition.
In the same vein, I wouldn't oppose a cure for autism, despite my own diagnosis. Why go through the pain and suffering that comes with autism in a world of non-autists? I've seen more than enough of the lives of people with non-high functioning autism to realise the absolute living hell a cure like this could prevent.
I'm wary of the "cures" people have tried, most of them based on fake psychology or pseudoscience, but I have no reason to expect the authors of this paper to be in it to show how their kid is "normal", like most people looking for "cures" seem to be. I expect this article to be quoted many times in the terrible Facebook groups that will also recommend things like bleach enemas to desperate parents, but I also expect good developments from the real scientists trying to understand and perhaps cure (the worst cases of) autism.
> it baffles me that someone would oppose a cure to what is obviously a medical condition
Ultimately, not everybody seeks to be "normal", and there is plenty of reason to fear the imposition of normalness when simply being functional would have done just fine.
When you are close to the norm, it’s much easier to ignore your differences. When you are farther away, you have to decide what to do: deny them, accept them, mask them, amplify them.
Remember, the article is talking about people with profound disability, not people who can comment in forums. I think it would be fantastic _if_ there's a set of markers in a young infant that can be acted on preventing non-verbal, constantly in terror, withdrawn inmates of special hospitals. I don't think they're talking about my dislike of telephones, or fear of shopping centers, or frequent confusion with figurative versus literal language.
Even though the last thing has got me in fights more than once. Fights that are sudden, surprising and unwarranted to me, but completely expected given how I reacted to what someone said.
Mmm, that sounds rather uncharitable. While obviously Deaf people aren't a hivemind, I think people who are not Deaf (and fully-abled people in particular) should listen when they each speak for themselves instead of coming to broad conclusions of "folly".
For me it began to click due to somewhat similar discussions I've had about my sight (I'm moderately myopic in both eyes and significantly astigmatic in one), where I've explained that:
- yes I actually like wearing glasses, and am not interested in contact lenses at all
- yes I also like my uncorrected vision: I like the softness and the smoothing over of details, and the way that lights scatter, and the fact that I can focus on things that are right in front of my nose
- no it isn't anxiety that's stopping me from getting the likes of LASIK; I actually like having both corrected and uncorrected vision
And it is astonishing how much people who are caught up in their own complexes about vision deficiencies try to convince me that I'm stupid or even lying because I don't share their aversion. It was rather off-putting, to be honest.
So yeah, that was how I began to see how people whose condition (for lack of a better term) is much more strongly linked to their identity[0] would end up with their hackles permanently raised against the idea of a cure for a life experience that they find neutral and/or positive coupled with the prevailing sentiment that they must be so grateful and excited about its existence (and if they aren't then they must be stupid or crazy). Theoretically it's good that the capability exists because it gives the choice to those who do want it, but when a person is part of a group without much societal power to begin with, I don't think it's irrational to fear that it would eventually end up as an imposition rather than a choice (especially when we get obstetric treatment).
0. For example, sign languages are distinct linguistic phenomena and not simply a cipher for spoken language. And wherever there is distinct language, a distinct culture soon follows. This is why "Deaf community" and "Deaf culture" are real things in real life not just something that someone on Twitter made up, contrary to many abled people's assumptions.
I'm not trying to convince you that you should get LASIK if you don't want to, that's your prerogative, however:
- Anyone can wear glasses (or even contacts) for fashion, frames are sold without prescriptions. One can have glasses and perfect vision.
- People with 20/20 vision also have the option to wear glasses that make their vision worse for whatever reason, or see things closer to their nose.
The point of this comment wasn't to belittle your own choice to correct your vision or not, but to point out why someone might not understand your aversion to correcting it given those reasons.
I'm sorry, if I'm reading you correctly you think that I should...pay for eye surgery, go through the recovery period and then...continue to use vision correcting glasses, albeit with a different prescription (one that simulates myopia and astigmatism)?
And this supposedly makes so much sense to you that you cannot understand why someone would not do that?
My first sentence literally says I'm not trying to convince you, and the reasons you gave in your previous comment for not doing so are different than the ones you're giving now.
The history of Autistic Psychopathy/Aspergers specifically, which has a direct throughline to the modern concept of autism, is inexorably tied to the history of Austrian and later Nazi eugenics. Sterilisation was supported especially more by Nazi hardliners, although catholics tended to support voluntary abstinence. Involuntary euthanasia was practiced, not openly, against the autistics deemed to be life unworthy of life - of no use to the Volk - who lacked gemüt (Soul, spirit, etc). Those deemed at one time redeemable, but ruined by their parents were also purged. Those deemed more useful, brilliant, geniuses in the sciences, with good Nazi parents, but with lacking gemüt due to their hyper-masculine nature, were to be rehabilitated and treated with patience and understanding, but even there reproduction was to be AT LEAST discouraged. The ideal Nazi autistic was either dead, or like a worker bee, sterile and working tirelessly for the good of National Socialism and the breeding stock Aryans. One of the goals the child welfare system had was identifying which category each child fell into as young as possible, so as to treat them accordingly with haste.
We also have the western eugenics movements, and while autism wasn't really conceived in their heyday, they had much more of a family-centric take on eugenics, although it was still at the time largely oriented around the good of the welfare state.
For the autistic activist, nothing makes more sense than to stymie such research, as autism's diagnostic prevalence expands each year, seemingly driven largely by a loosening definition of autism, so to delay the research which enables eugenics, people are going to see Autistics as having relatively high gemüt and productivity compared to the past, which should discourage eugenics. They plainly value the right/value of the existence of autistics/themselves, above the potential reduction of suffering allowed by such research. Eugenics after all never actually died and remain popular, it's just become politically incorrect to openly admit to supporting or doing it, and we're currently engaging in a quite successful eugenics campaign against downs syndrome[1], oh, and the ongoing eugenics against autistics [2]. Perhaps these autistic activists would have more confidence in such research if modern eugenics were not legal, accepted, and practiced against them? Or perhaps they should just get over their own egos and admit that this research is for the good of the Volk, which is certainly a take I've heard from autistics themselves.
That all being said - metabolic research is probably going to be less controversial than say genetic research, since it's unclear that you can use the former to facilitate selective abortions or screen sperm donors. So I think in this case, the self-declared neurodivergent leaders will let this slide, as if such research can't be used for eugenics but makes autistics more popular it should make eugenics less likely, not more likely.
> defined in such a way that two with the same label can have remarkably little overlap in terms of observed behaviour
I believed this until my daughter was diagnosed and then I was later diagnosed. My experience with (some) professionals was a surprise to me; a much wider variety of "observed behaviors" than I expected seem to stem from sensory issues for example. And I think it makes sense that humans might adopt a wide variety of ways to deal with for a much smaller variety of processing issues.
(Unrelated to the professional experience) Have you looked into monotropism? It's a fairly compact theory that ties a lot of behaviors together that might look like they have no overlap from the outside.
Also:
> It’s a label for those perceived by others in a certain light
If you ask the majority of people if somebody who they do not perceive as engaging in autisitic behaviours, and was not diagnosed as autistic, but considers themselves autistic, is autistic, they will say no. Scientifically (which how it’s defined in the OP), it’s not defined by psychiatrist appraisal and self-assessment plays no necessary role in the process and alone holds no diagnostic validity. We can also invert this: self-denial doesn’t make one non-autistic if they’re seen as engaging in autistic behaviours and are diagnosed as autistic by a professional.
I’ll concede that a minority believe that autism is self-definable though. I’d prefer things that way myself, but the among other things it would make it impossible to gatekeep services for the autistic if self-diagnosis were held in the same esteem as physician diagnosis, so it won’t catch on anytime soon.
I’m not sure what point you are making with this reply. I’m late/adult self-identifying autistic. I’ve done this with some of the standard tests that psychiatrists use, attended workgroups related to the topic, and studied extensively. Self-diagnosis is highly accurate for autism, both for positive and negative evaluations.
I am also pursuing a formal diagnosis because so many people downplay it when I tell them I’m autistic. I don’t have the affect at first glance, but it does come out in my behaviors if you get to know me a bit. I’ve also had the luxury of therapy, eduction, etc.
I also agree that the categorization is overly broad and your original post resonates. There are various non-overlapping clusters of traits that fall under autism.
I do think, however, that at the core of it is a common difference in information and sensory processing.
Adults that get diagnosed later typically have developed very good ability to mask so casual acquaintances probably don’t suspect they are autistic. So it’s not surprising they would downplay it.
>Self-diagnosis is highly accurate for autism, both for positive and negative evaluations.
I've also gone into autism communities before and declared that I had self-undiagnosed myself with autism, which is something I've desired recently, to re-diagnose myself as not being autistic and either having nothing or ADHD. This was totally rejected, and repeatedly brought up was my admittance to a lengthy period of diagnosis, overseen my multiple doctors, from a very young age, which all were seen as evidence of the validity of my diagnosis (conversely, I'd presume, they treat the opposite as more less valid or invalid). Interestingly the same people generally accepted diagnosis, but to reject a diagnosis, well that was beyond the pale and denialism. I brought up the same to a psychiatrist, saying I wanted to be treated by a psychiatrist for ADHD and NOT autism because I believe it will lead to superior outcomes. They blew me off, exasperated, saying that any psychiatrist would simply observe my symptoms and deem me autistic and treat me that way no matter what I did, denying that I even had the capability or possibility to receive treatment which was not based on the premise that I was autistic. Metabolic testing and self-diagnosis be damned.
Just this moment I'm in the process of seeking accommodations. I self reported autistic symptoms to my employer. In the past, during interviews they have accepted my diagnosis and pledged to "accommodate" me accordingly, and I was ticked off as a diversity hire. They asked me to verify such symptoms with a doctor. They subsequently said they reserve the right to an independent psychological assessment of myself or my records. This is very pleasing to me, as either I shall receive accommodations and an affirmation that I am autistic, or my undiagnosis, which is truly a win-win.
If I was in family court, and it was argued that I was unable to say take care of children because I'm autistic, I could not successfully object on the grounds that "I'm not autistic".
Yet my observation is what is considered the true measure of somebodies autisticness, the validity of their diagnosis and their symptoms, is independent psychological assessments by an examiner not beholden to your own self-assessment. I theorise this is both because of a lack of faith in the competence of either of us to assess an autism diagnosis, as well as a lack of faith in our objectivity. I've met a number of self-diagnosed people who are shy about disclosure or asking for accommodation BECAUSE they are self-diagnosed, and while obviously believing in the reality of their autism, are either self-sceptical or believe in others scepticism to a degree not commonly seen in those medically diagnosed.
I don't mean to be exclusionary or gatekeeping, just descriptive of what I believe to be social/political/legal/scientific reality. I don't like that things are this way, I'm aware that hilariously I've never seen ANY evidence that suggests physician diagnosis is more accurate than self-diagnosis, I'm aware of the many historical problems with physician diagnosis, I merely believe that they ARE this way.
I’ve never met anyone that self identifies as autistic that didn’t have some obvious behaviors (in the tech world there are a lot). This seems like a strawman.
Here [1] is the DSM diagnostic criteria for autism. It's broad to the point of absurdity. The reason many people think autism is a faux disorder is because it includes everything from an individual who simply sits in the corner endlessly flapping his hands, completely unable to function as a human being, to Bill Gates or Elon Musk. The weaker diagnoses, which is an increasingly large chunk of all of them, often seem like an effect to pathologize normal behavioral differences within people. This is, IMO, one of those things people are definitely going to look back at think 'wtf were they even thinking?'
> The weaker diagnoses, which is an increasingly large chunk of all of them, often seem like an effect to pathologize normal behavioral differences within people.
"1994-95's fad behavioral disease was a syndrome called Attention Deficit Disorder (ADD), supposedly characterized by (among other things) a combination of short attention span with an ability to ‘hyperfocus’ imaginatively on interesting tasks. In 1998-1999 another syndrome that is said to overlap with many hacker traits entered popular awareness: Asperger's syndrome (AS). This disorder is also sometimes called ‘high-function autism’, though researchers are divided on whether AS is in fact a mild form of autism or a distinct syndrome with a different etiology. AS patients exhibit mild to severe deficits in interpreting facial and body-language cues and in modeling or empathizing with others' emotions. Though some AS patients exhibit mild retardation, others compensate for their deficits with high intelligence and analytical ability, and frequently seek out technical fields where problem-solving abilities are at a premium and people skills are relatively unimportant. Both syndromes are thought to relate to abnormalities in neurotransmitter chemistry, especially the brain's processing of serotonin.
Many hackers have noticed that mainstream culture has shown a tendency to pathologize and medicalize normal variations in personality, especially those variations that make life more complicated for authority figures and conformists. Thus, hackers aware of the issue tend to be among those questioning whether ADD and AS actually exist; and if so whether they are really ‘diseases’ rather than extremes of a normal genetic variation like having freckles or being able to taste DPT. In either case, they have a sneaking tendency to wonder if these syndromes are over-diagnosed and over-treated. After all, people in authority will always be inconvenienced by schoolchildren or workers or citizens who are prickly, intelligent individualists — thus, any social system that depends on authority relationships will tend to helpfully ostracize and therapize and drug such ‘abnormal’ people until they are properly docile and stupid and ‘well-socialized’.
So hackers tend to believe they have good reason for skepticism about clinical explanations of the hacker personality."
Which in turn becomes the dichotomy between wanting the diagnosis and thinking the diagnosis is silly.
You start off with some institution that has a set of rules on paper, which nobody actually follows or even reads because they discover what they're expected to do via social cues. Then someone with autism doesn't pick up on the social cues, commits a faux pas, and the administration flips through the rule book to find whatever rule they can be found to have broken in order to punish them.
The autistic individual is then told that they are bad and need to learn to follow the rules, so they read the rule book cover to cover and follow every rule to the letter. But many of the rules are aggressively stupid and impractical or even purposely designed to be violated by ordinary behavior so the administration always has an excuse to punish whoever they want. Strictly following them is also a faux pas.
The question then is what to do about it. The autistic individual wants some accommodations so they're not constantly being punished for not picking up social cues. The administration wants them to take some drug that makes them stop being atypical, or to be rid of them. These are, of course, two very different and incompatible things.
It's called "autism spectrum" for a reason, partially because a lot of the symptoms overlap with each other, and can appear in every possible permutation.
> The reason many people think autism is a faux disorder is because it includes everything from an individual who simply sits in the corner endlessly flapping his hands, completely unable to function as a human being, to Bill Gates or Elon Musk.
At least for the latter, it's undeniable he's presenting quite a few symptoms, and that even before he went off the rocker in 2018 with the "pedo" comments. He's lucky to be as rich and successful as he is.
> The reason many people think autism is a faux disorder is because it includes everything from an individual who simply sits in the corner endlessly flapping his hands, completely unable to function as a human being, to Bill Gates or Elon Musk.
Autism and intellectual disability are different things. Successful people like Bill Gates can also be depressed, as can somebody who sits in a corner. That doesn't say anything interesting about depression, nor does it say anything interesting about autism. Same with cancer or male pattern baldness or really just about any condition you care to think of.
i thought we prescribed adderall for autism, but i guess cross-diagnoses are just so common nowadays that i didn’t realize what it was being prescribed for among people i know
You may be under this impression because ADHD and Autism are so frequently comorbid:
According to the scientific literature, 50 to 70% of individuals with autism spectrum disorder (ASD) also present with comorbid attention deficit hyperactivity disorder (ADHD). From a clinical perspective, this high rate of comorbidity is intriguing. What is the real significance of this dual diagnosis? Is ADHD in fact always present in such cases? Might the attentional impairment reported among our ASD patients actually be a distinct trait of their ASD—namely, impaired joint attention—rather than an ADHD attention deficit? Could their agitation be the consequence of this joint attention impairment or related to a physical restlessness etiologically very different from the agitation typical of ADHD? The neurobiological reality of ASD-ADHD comorbidity is a subject of debate, and amphetamine-based treatment can have paradoxical or undesirable effects in the ASD population. Consequently, does a dual diagnosis, notwithstanding its currency in the literature, prevent us from shedding sufficient light on major physiopathologic questions raised by the clinical picture of ASD?
I mean I was diagnosed with a salad of things. And then different doctors tell me different things about how they're all related or unrelated. It was honestly a very amusing situation. The only sense I got out of the whole long ass process was: neurological sensory difference "combo" in the roll of the dice, some of it given hereditarily, some this that and the other. I really see why this stuff is so frustrating for people. I'm super lucky circumstances are such for me that I can give less shits about the social issues my autism causes, allowing me to explore it.I actually just started a blog last week to share as I explore this stuff, I'm a bit shy to share it as I've never blogged in earnest before, so I have no sense of if this is good, bad, silly, lame, boring, etc: https://b.h4x.zip/autism-thinking-and-whiteboards/
> It's a label for those perceived by others in a certain light
This is untrue and unsupported by evidence
> defined in such a way that two with the same label can have remarkably little overlap in terms of observed behaviour
This is untrue and unsupported by evidence
> You diagnose autism based on how people act, not who they are
You diagnose all disorders based on observable phenomena, not some sort of metaphysical essence.
> Any biological markers for autism are politically suspect
What is this, Lysenkoism?
> as it would imply those without those markers are invalid
Are you saying that in your view biology has some ability to mark people as valid or invalid? That's an extremist view and I wonder how you arrived at it. If your ideology requires you divide the world into "valid" and "invalid" people, then it's probably a good time to rethink your approach.
>> defined in such a way that two with the same label can have remarkably little overlap in terms of observed behaviour
> This is untrue and unsupported by evidence
Here is the diagnostic criteria for ASD: https://www.cdc.gov/ncbddd/autism/hcp-dsm.html ... It literally lays out a path that can generate a non overlapping diagnosis. It sort of has to because we lummped what were previously two disorders together because people are sensitive to nazi's having existed.
Now go to the UK where there is strong advocacy for a whole other set of diagnostic criteria for women. The DSM begins to look barbaric and/or sexist if not misinformed.
The moment there is a biological underpinning to something like ASD it gets interesting because what do you do with all the folks with a diagnosis who DONT fit that label. They have something that looks the same but isnt... and the whole psychiatry/psychology community looks like quacks. DO note that im not opposed to these fields but they need to get their shit together on reproducibility.
Thanks I'm thoroughly familiar with the DSM criteria, the ICD criteria, and the research literature.
> It literally lays out a path that can generate a non overlapping diagnosis.
It does not. If you believe there are exist two autistic people who have no overlapping symptoms please present an example.
> The moment there is a biological underpinning to something like ASD it gets interesting because what do you do with all the folks with a diagnosis who DONT fit that label.
Compare this to, "The moment there is a biological underpinning to something like cancer it gets interesting because what do you do with all the folks with a diagnosis who DONT fit that label." To which the answer is "that's a red herring, the current understanding of cancer doesn't require all cancers share the same biological origins, so why should finding one marker call that into question?"
Or "The moment you locate the code line with a buffer overflow it gets interesting because some programs that seem like they have a buffer overflow don't have that line of code."
Responding to all the "This is untrue and unsupported by evidence" statements. In the context of this thread, which is addressing a scientific article.
> Autism is a socioculturally bound diagnosis
I'm making a normative claim here, so your criticism is correct, as this is not a scientifically testable claim at all. I'm loosely an adherent of the social model of disability[1].
> It's a label for those perceived by others in a certain light
First, you later agreed with this statement later when you said "You diagnose all disorders based on observable phenomena" so this criticism is incoherent and I'm not convinced you even disagree with me so much as misunderstand me. Scientifically I'd point out the DSM-V-TR defines autism observationally[2] and the CDC's research on autism uses said definitions[9]. That is evidence supporting what I say.
> defined in such a way that two with the same label can have remarkably little overlap in terms of observed behaviour
I'll again point to the DSM-V-TR[1] where two individuals can satisfy section B of the criteria with no overlap whatsoever. The only necessary behavioural commonality are various social deficits. I'll also point out there are three categories of autistics depending on support needs.
More blithely and common-sense like, I'll just point out most people do not see all that much common in the behaviour of Elon Musk and some autistic in a full time care home who cannot dress or bathe themselves. The Autistic Spectrum also literally used to be split into 3 separate diagnosis's diagnosed based partially on behaviour, and how was that ever even possible or contemplated if people never believed there was a significant difference in autistic's behaviours?
---
>Any biological markers for autism are politically suspect - What is this lysenkoism
I have not scientifically researched this specific point, but some historical background: Autism genetics research projects have been cancelled by patient backlash [3] where autism genetics projects were scuttled upon popular backlash. "Autistic psychopaths" in the past were subject to Euthanasia, forced sterilisation, and encouraged to voluntarily sterilised themselves by the Nazi regime[4] which raises obvious questions as to the utility of biological testing to enable a future eugenics regime which may also include new technologies like pre-natal testing. While not biological testing, we can see that there is political backlash against cognitive testing[5] to determine social supports for autism. We have also seen the rise of self-diagnosis[6] with it defended as being more accessible than physician diagnosis and based on the lack of evidence that it's LESS accurate than physician diagnosis which historically has been subjected to multiple definitional changes[7] and bias in terms of access to diagnosis itself[8]. Ergo, unless this serves as a method of diagnosis more accurate than physician diagnosis, it will be subject to the same criticism.
> as it would imply those without those markers are invalid - Are you saying that in your view biology has some ability to mark people as valid or invalid?
I'm making a claim about others belief if biology should be used to establish the validity or invalidity of autism. It's my belief that the recognition of biological markers of autism would be vigorously protested by patients and advocacy groups because of what I just brought up.
I think they meant "people who didnt die before 25." I don't know much about autism, but I had three friends who died before 30 in accidents that were almost certainly related to ADHD. Two of them were doing behavioral therapy but didn't believe in pharmaceutical treatment. One of them was generally medicated but wasn't taking their medication on the day they died (due to medication shortages for ADHD drugs).
That last one rear-ended a semi-truck at high speed. Probably after getting lost in thought after reading a "You shouldn't text and drive. If you text and drive, it may be the last text you ever read. Remember, don't read superfluous text; pay attention to the road, for your own safety and the safety of those around you." Obviously I don't know that last part; I am just bitter.
I knew someone in high school that had ADHD. He totaled many cars when he wasn't on meds for things like game day for sports (not sure if that's a performance or health thing).
What baffles me, is how someone diagnosed with a condition that affects driving is allowed to drive without the condition being treated - especially if they are under a prescription and just not taking it, and also if they have multiple accidents attributed to the condition. We already require this for people with seizures, for people needing glasses to wear them, etc.
For example, I have ADHD. I learned to drive at 15, got my license at 16, and managed to get my first speeding ticket at the age of 30, and my first car accident at 31 (of which I wasn't at fault). I wasn't diagnosed/medicated until I was almost 23.I do not think I am any better nor worse than the average driver either. Perhaps I have been lucky, but who knows?
Also, just because one is medicated does not mean it magically reduces all symptoms. IIRC, I think most adults only get something like 50% reduction in symptoms at best.
In my experiences, I find the efficacy of ADHD medication to be vastly overstated. I think this is mainly due to a strong honeymoon period the medication provides in the beginning. What I mean is that, the medications are extremely effective for a certain time period, but the longer one is one the medications the greater the diminishing returns become. There are only so many options/formulations and dosages can only be increased to an extent.
Also, euphoria is a very common side-effect when first starting the medications. So, a lot of life-changing anecdotes that people comment on the Internet in the beginning of treatment should be taken with a grain of salt. After a decade of treatment, most people cannot tell if I am medicated or not anymore. As in, most people think I am not medicated despite being so.
That's mostly the same for seizures - affects people differently (and different effects), medications provide various effectiveness, and individual evaluation is needed.
> We already require this for people with seizures, for people needing glasses to wear them, etc.
But then you have the same problem against something which is much harder to measure.
Many people have glasses even though their vision is mostly fine and it's perfectly reasonable to drive without them, the glasses just make things slightly more focused. Other people are effectively blind without corrective lenses.
ADHD is the same way only you don't have a nice mathematically precise lens prescription to tell you the degree of it, and with no objective way to measure the severity, just asking people a question that everybody knows can cause you to have a restriction placed on you is pointless and only invites people to lie. Which in turn may make them less likely to seek and receive medical treatment -- the thing you want to happen if they are a hazard without it.
This is further complicated by what the treatments for severe ADHD are. Can you imagine the headlines? "Government forces drivers to drive on meth."
The easy thing to measure with it is how many accidents are attributed to the person in a given time period. If you have 5 accidents including totalling 3 cars in the last 2 years of high school, you shouldn't be driving.
That doesn't actually tell you anything. Someone who drives 100,000 miles/year at the same level of safety would have 20 times more accidents in the same period of time than someone who drives 5000 miles/year. Certain areas have more traffic or are otherwise more prone to accidents. 5 is not a large enough statistical sample to know if someone is the cause or just unlucky.
Yeah yeah, you have to report mileage for insurance and registration so of course that will be taken into account. Even if you drive 100k miles in 5 years, you should not have 5 accidents that were your fault. That's just insanely unsafe.
The cause isn't determined by luck or number - it's determined by the facts that show you or the other person was at fault (or that nobody was at fault).
> you have to report mileage for insurance and registration
You don't necessarily have to report mileage for insurance, it only happens for registration when the vehicle changes ownership, and in either case that is the mileage on the vehicle rather than the driver. Someone who drives 100,000 miles a year might very well be doing it in multiple different vehicles.
> Even if you drive 100k miles in 5 years, you should not have 5 accidents that were your fault. That's just insanely unsafe.
It's not a large statistical sample. A large proportion of the people it happens to will be drivers of average skill operating under conditions with above-average risk. Being an unsafe driver isn't the same thing as driving in an area with unsafe intersections.
> The cause isn't determined by luck or number - it's determined by the facts that show you or the other person was at fault (or that nobody was at fault).
Most of these investigations are cursory unless someone dies, and under those conditions they're basically impossible to get right except by chance. One car rear-ended the other, the driver in front says the other one was following too closely, the one in back says the other cut them off and then slammed on the brakes, there were no unbiased witnesses. Whatever goes into that report is going to have the accuracy of a coin flip if the accident isn't one that warrants a thorough investigation -- and even then there may be no way to ever know what really happened.
My state requires mileage every year. Even if it's not accurate for everyone, it's accurate enough for vast majority of people.
Even if you talk about someone cutting you off, that doesn't happen often. You aren't going to get 5 "coin flip" accidents in 5 years. There are dash cams if you're really that concerned. Which brings up another good point. If you really think that fault will be attributed to you incorrectly that often, then your insurance will surely go up, so you already have a dash cam to protect yourself from this existing reality you are peddling?
> Even if it's not accurate for everyone, it's accurate enough for vast majority of people.
It has to be accurate for everyone. You're talking about imposing a restriction that amounts to house arrest for anyone who can't afford a city apartment or a chauffeur.
> Even if you talk about someone cutting you off, that doesn't happen often.
I see that you have not experienced the wonders of New York traffic.
> You aren't going to get 5 "coin flip" accidents in 5 years.
If you flip a coin 5 times in a row, the chances of it coming up tails every time is 1 in 32. Against a hundred million drivers that's a lot of people.
And that's assuming it's fully random and not e.g. you have the first two falsely attributed to you at random, at which point investigating officers see your record and become biased to finding you at fault in any case going forward.
> If you really think that fault will be attributed to you incorrectly that often, then your insurance will surely go up, so you already have a dash cam to protect yourself from this existing reality you are peddling?
People don't think it will happen ahead of time, they realize it can happen after it already has.
US motor vehicle laws are also (presumably intentionally) designed to let the police come to any conclusion they want as a pretext for searches or revenue-generating citations. For example, hardly anybody follows the speed limit, so if you drive below the speed limit then you're impeding the normal flow of traffic (nominally a violation), and causing a (real) hazard because other cars will bunch up and perform lane change maneuvers to go around you. It's also "suspicious"; the people who do it are disproportionately drunk or in possession of contraband. But if you drive with the flow of traffic then you're speeding which is also a violation.
A dash cam might then help you if an accident is caused by the other driver doing something egregious, but if it's caused by e.g. bad road design and the officer is nonetheless expected to assign fault to somebody, now you're handing them a pile of evidence from which to identify common violations. It's not obvious that it helps you.
But what does the have to do with Autism? That quote seems to be more about people not finding fulfillment/confirming to social expectations/wasting their lives vs. a neurodevelopmental disorder.
Not the GP, but since they mentioned high-functioning autism I’d guess they meant people with autism able to (very) successfully adapt to social expectations will likely forgo self-fulfilment in order to conform, without even necessarily being fully aware of it.
I think most people understand that disease nomenclature changes rapidly. Even if the word "autism" is deprecated in the future and replaced by a litany of other terms for conditions, the research is still useful and interesting.
> the same label can have remarkably little overlap in terms of observed behaviour.... You diagnose autism based on how people act, not who they are.
I'm able to mask until I'm alone. My meltdowns look exactly like the observed behavior you see in other people, I just hide it better.
I'm also verbal mostly, until I'm not and I'm dissociating. Then I look a lot what you're used to seeing, except i don't let you see that. I don't let you see me rocking and stimming.
I can talk for an hour in front of 100 people about my special interests at any depth, but I can't complete simple tasks that others can do every day like going to the grocery store and restaurants without extreme difficulty.
Some people are "high functioning" autists, meaning that they are able to suppress their negative autistic expressions for the benefit and comfort of people around them. This doesn't make them "not autistic" -- they still are even if you personally can't tell. It just means they're putting on an act for you, to make you happy, so that you don't respond in the negative way they are used to being received. You are witnessing a performance.
That suppression is not a constant, and it can't go on forever. Someone doing this long enough will go into autistic burnout, which is like an extended depression and comes with skill loss and an inability to function in society. If you were to see this person at that point, you'd "see" the autism then.
Is this all there is to being autistic though? No! Being autistic comes with a great capacity for curiosity, creativity, artistic expression, innovation, and excellence associated with committing fully (as in actually 100%, eschewing loved ones and society) to an endeavor.
These are things we don't want to "cure". Most of the problems I face related to my autism have to do with interfacing with society, and not understanding people or not being able to do things everyone else seems to be able to, without any compassion for my inability to do so.
As far as I can tell they come from being dysregulated, and being dysregulated comes from extreme sensory overload. If we can fix the sensory overload a lot of other things are fixed. But that doesn't mean we should be "curing" or "preventing" autism, and it doesn't mean people who aren't melting down and who can live by themselves aren't autistic -- they're just well regulated.,
"Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life)."
"Core diagnostic features are evident in the developmental period, but intervention, compensation, and current supports may mask difficulties in at least some contexts."
"Individuals who have developed compensation strategies for some social challenges still struggle in novel or unsupported situations and suffer from the effort and anxiety of consciously calculating what is socially intuitive for most individuals. This behavior may contribute to lower ascertainment of autism spectrum disorder in these individuals, perhaps especially in adult women. Thus, longer assessments, observation in naturalistic settings, and inquiring about any tolls of social interaction may be needed(Cage and Troxell-Whitman 2019; Hull et al. 2017). If asked about the costs of social interaction, for example, these individuals might respond that social interactions are exhausting for them, that they are unable to concentrate because of the mental effort in monitoring social conventions, that their self-esteem is adversely affected by being unable to be themselves, and so forth."
Observation is STILL actually essential to a diagnosis, you can't merely just claim to be masking, but it's not technically considered disqualifying for symptoms to only appear in certain contexts.
>Some people are "high functioning" autists, meaning that they are able to suppress their negative autistic expressions for the benefit and comfort of people around them. This doesn't make them "not autistic" -- they still are even if you personally can't tell. It just means they're putting on an act for you, to make you happy, so that you don't respond in the negative way they are used to being received. You are witnessing a performance.
The research I've seen on the cat-q shows that [1]:
- Neurotypicals men mask a statistically insignificant amount more than autistic men
- Autistic women mask a statistically insignificant more than neurotypical women
- Autistic women mask a statistically significant amount more than autistic men
- Autistics "Compensate" more, copy others behaviour, copy behaviour they learned from movies
- Autistics "Assimilate" more, they will force themselves unwillingly more than others to be social or not be social.
We should also get over what gets somebody defined as having "high functioning" or "level 1" autism. It's a lack of severity of social impairments AND restricted & repetitive behaviours. With autistic men specifically, the evidence points to the "high functioning" as simply naturally exhibiting less autistic social interactions and behaviours than the "low functioning" without any exceptional effort beyond what the everyday non-disabled person does. Some of them may be tortured actors, but said people are no more prevalent than they are in the general population. It's things like imitation, and being in unwanted social situations, which is more characteristic of autism.
>Being autistic comes with a great capacity for curiosity, creativity, artistic expression, innovation, and excellence associated with committing fully (as in actually 100%, eschewing loved ones and society) to an endeavor.
Those may correlate with autism, but aren't definitional of it. The DSM-V-TR's 1891 word diagnostic criteria briefly mentions "Special interests may be a source of pleasure and motivation and provide avenues for education and employment later in life" as the sole positive trait of autistics.
I don't mean to be a dick here - more activist. If these are qualities of autistics, they should either be part of the criteria for "Autism spectrum disorder" or autism should be conceptualised as being distinct from disorder similar to how we distinguish between being transgender and having gender dysphoria. Otherwise, one can say that all they wish, but they'll face negative stigmatisation from those who see autism as a definitionally negative mental disorder with no upside other than employability. "Autism" is quite the stigmatised word today and I blame psychiatry and The DSM for that more than anything else as they treat negatives associated with autism as definitional but not positives.
It won’t. Autism is a socioculturally bound diagnosis, not a single disease that exists in biology. It’s a label for those perceived by others in a certain light, defined in such a way that two with the same label can have remarkably little overlap in terms of observed behaviour. You diagnose autism based on how people act, not who they are. Any biological markers for autism are politically suspect as it would imply those without those markers are invalid, while also raising the spectre of eugenics for those with the markers.
More likely and productivity it might eventually REPLACE autism as a diagnosis with something scientifically valid and treatable, as if somebody displays no autistic behaviours as a result of treatment of a metabolic disorder, why diagnose them with autism?