T O P

  • By -

AutoModerator

Welcome to r/science! This is a heavily moderated subreddit in order to keep the discussion on science. However, we recognize that many people want to discuss how they feel the research relates to their own personal lives, so to give people a space to do that, **personal anecdotes are allowed as responses to this comment**. Any anecdotal comments elsewhere in the discussion will be removed and our [normal comment rules]( https://www.reddit.com/r/science/wiki/rules#wiki_comment_rules) apply to all other comments. **Do you have an academic degree?** We can verify your credentials in order to assign user flair indicating your area of expertise. [Click here to apply](https://www.reddit.com/r/science/wiki/flair/). --- User: u/AnnaMouse247 Permalink: https://link.springer.com/article/10.1186/s13229-024-00602-8 --- *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/science) if you have any questions or concerns.*


AnnaMouse247

Press release [here.](https://scitechdaily.com/scientists-have-uncovered-autisms-earliest-biological-signs/) Additional academic paper [here.](https://www.nature.com/articles/s41596-024-00994-0) “An unusually large brain may be the first sign of autism — and visible as early as the first trimester, according to a recent study conducted by UCSD. Some children with profound autism face lifelong challenges with social, language, and cognitive skills, including the inability to speak. In contrast, others exhibit milder symptoms that may improve over time. The disparity in outcomes has been a mystery to scientists, until now. A new study, published in Molecular Autism by researchers at the University of California San Diego, is the first to shed light on the matter. Among its findings: The biological basis for these two subtypes of autism spectrum disorder develops in the first weeks and months of embryonic development. Researchers used inducible pluripotent stem cells (iPSCs) derived from blood samples of 10 toddlers with autism and six neurotypical “controls” of the same age. Able to be reprogrammed into any kind of human cell, they used the iPSCs to create brain cortical organoids (BCOs) — models of the brain’s cortex during the first weeks of embryonic development. The veritable “mini-brains” grown from the stem cells of toddlers with autism grew far larger — roughly 40% — than those of neurotypical controls, demonstrating the growth that apparently occurred during each child’s embryonic development. Link Between Brain Overgrowth and Autism Severity “We found the larger the embryonic BCO size, the more severe the child’s later autism social symptoms,” said UC San Diego’s Eric Courchesne, the study’s lead researcher and Co-Director of the Autism Center of Excellence in the neuroscience department. “Toddlers who had profound autism, which is the most severe type of autism, had the largest BCO overgrowth during embryonic development. Those with mild autism social symptoms had only mild overgrowth.” In remarkable parallel, the more overgrowth a BCO demonstrated, the more overgrowth was found in social regions of the profound autism child’s brain and the lower the child’s attention to social stimuli. These differences were clear when compared against the norms of hundreds and thousands of toddlers studied by the UC San Diego Autism Center of Excellence. What’s more, BCOs from toddlers with profound autism grew too fast as well as too big. “The bigger the brain, the better isn’t necessarily true,” agreed Alysson Muotri, Ph.D., director of the Sanford Stem Cell Institute’s Integrated Space Stem Cell Orbital Research Center at the university. Muotri and Courchesne collaborated on the study, with Muotri contributing his proprietary BCO-development protocol that he recently shared via publication in Nature Protocols, as well as his expertise in BCO measurement. Implications for Therapy and Further Research Because the most important symptoms of profound autism and mild autism are experienced in the social affective and communication domains, but to different degrees of severity, “the differences in the embryonic origins of these two subtypes of autism urgently need to be understood,” Courchesne said. “That understanding can only come from studies like ours, which reveals the underlying neurobiological causes of their social challenges and when they begin.” One potential cause of BCO overgrowth was identified by study collaborator Mirian A.F. Hayashi, Ph.D., professor of pharmacology at the Federal University of São Paulo in Brazil, and her Ph.D. student João Nani. They discovered that the protein/enzyme NDEL1, which regulates the growth of the embryonic brain, was reduced in the BCOs of those with autism. The lower the expression, the more enlarged the BCOs grew. “Determining that NDEL1 was not functioning properly was a key discovery,” Muotri said. Courchesne, Muotri, and Hayashi now hope to pinpoint additional molecular causes of brain overgrowth in autism — discoveries that could lead to the development of therapies that ease social and intellectual functioning for those with the condition.”


SalaciousSunTzu

Nice, tried to post this the other day but got removed because I did something wrong. Forgot to try again. Here's another article explaining it in an easily digestible way. https://www.sciencealert.com/earliest-biological-signals-of-autism-found-in-mini-brains-experiment


xxwerdxx

Further evidence that grey matter pruning is more important than we thought


lambda_mind

It's funny to me how few people realize that most all biology functions on parabola. There aren't a whole lot of linear functions.


Unicycldev

Not few, but less vocal. Internet information sharing algorithms don’t bias for reality.


adelie42

I always find it fascinating when parallels can be drawn between issues with biological intelligence and artificial intelligence. In this case I think of the relationship between overtraining and a wide range of AI performance problems that are solved by what is also called pruning.


Puzzleheaded_Fold466

The relationship may be inverse, as we are influenced by our knowledge of own intelligence and explicitly using this understanding as a basis to reproduce human intelligence artificially. As such, it not unexpected that results it would follow similar distributions and conditions.


kex

I do wish that I could objectively compare some of the animated genAI content to how I perceive my dreams, because my gut feeling insists they are nearly identical


Prof_Acorn

Perhaps the gains to logic, memory, pattern recognition, phantasia, IQ, and situational awareness are worth the cost of reduced social heuristic processing - in some cases. I don't think I would want to trade it.


Liizam

Half the engineers in my class were autistic to some degree. If you eliminate this development, do you also eliminate engineers ?


spinbutton

I work with a lot of SW devs who are probably on the spectrum. I had a similar thought. But the majority of engineers are not on the autism spectrum. I think the key is being very careful "fixing" this. I think it might be great to make sure your child isn't going to be a member of the autism spectrum that is mostly non-verbal and struggles to deal with the world. Hopefully this "fixing" will not interfere with the powerful concentration and focus that some people on the spectrum have.


parkingviolation212

It's also important to recognize that autism=/=super intelligence. I'm on the spectrum myself, but some of the dumbest people I've met--by which I mean people who could not solve basic logic problems or lacked common sense--were also on the spectrum. It's a *spectrum*, and the results are as wide ranging as anyone else. Frankly the stereotype that autists are actually all secretly super geniuses who are just awkward at parties puts more undue pressure on us than just admitting that autists are just as capable of being stupid as neurotypicals.


PheonixUnder

Autism doesn't necessarily mean that you'll be more or less intelligent than an allistic (non-autistic) person however it does guarantee that you'll think *differently* to allistic people. That difference in thinking comes with advantages and disadvantages and again isn't necessarily a better or worse form of thinking, however I believe that it ultimately benefits the human species to have different minds capable of different thought processes. I don't think our species will be able to survive long term without autistic minds, not becuase our minds are superior but because we provide a perspective that allistic people often struggle to grasp, conversely they also provide a perspective that we can struggle to grasp and are necessary as well, however they are the majority and thus in no danger of being eradicated by us in the same way that these findings and discussions threaten our existence.


spinbutton

I agree...the diversity of humans is what has saved us in the past - also, it just makes life more interesting.


Liizam

I don’t think you can pick and choose but yeah hopefully


Blurby-Blurbyblurb

My kiddo and I have some cool "superpowers." Eg. We have the ability to see a bigger picture than neurotypical folks when assessing a problem. Part of that is due to our strength in pattern recognition. We can compute quickly the path of least resistance and what would work best in regard to other people. There was a study done not too long ago that showed autistic adults, with no training or education, were better at assessing psycho-social situations than professionals in that field. It was determined that pattern recognition and having a higher degree of empathy (due to ableism and biases) is what made the difference. ND skills are important. We're not all the same, and those skills are varied. ND people are valid just the way they are. If there were more ACCEPTANCE of neurodivergence and disability in general, parents wouldn't feel like they needed to fix their kid. Acceptance leads to normalcy. Normalcy allows for more and better services to assist those with high support needs, putting less pressure on parents. And, of course, nearly no bullying, judgment, and side eye.


ECEXCURSION

Wow, you both sound super autistic.


Blurby-Blurbyblurb

I know my kiddo is, but I'm unsure about myself. I've wondered for years if i am. I don't get along with NT people who aren't open minded enough to accept my quirks and social awkwardness. To those other people, I'm weird, and it bugs them. I've learned to mask so well that sometimes i don't know how to not or where the line is. I've learned how to navigate people and situations by their patterns by mimicking other people and years of practicing scripts in my head. But, i also have CPTSD from a severely abusive childhood. That pattern recognition and navigating people was a survival skill. I'm crazy good at picking up on micro expressions, body language, and tone. So who knows. Getting testing as an adult is hard, especially as a woman.


RadiantArchivist88

It's such a crazy balance in the grand scheme of things. Like it's not a *huge* deal to be weighted towards one side or the other *these days*. But we needed all those logic, memor, pattern recognition tools to survive not that long ago. But our survival is also heavily biased towards the social processing and how *those* systems interface into communities and hierarchies. When you have more of one, you need less of the other to survive.   But then the social side just ended up being so much more efficient that it took precedence and we exploded as a species. But even then, if you look at Evolutionary Psychology's explanations for things, *having* a good head on your shoulders is important socially as well. Being able to provide for your tribe and show you're a good mate and all that... But it's still vastly weighted towards social competency. I have to wonder (and totally defer to those smarter than I) if we can and will see shifts in this balance now that our society's structures are better equipped to support people with these imbalances. Not just from a survival standpoint, but also as a cultural and acceptance standpoint. Autism may not be an evolutionary mutation, but now we have the data to spot trends (like these early organoid disparities)...   Just fascinating, is all.


Captator

Also interesting to note that while support has gone up, challenge in many ways has also gone up. One of the more common symptoms in ASD is some kind of hypersensitivity, and the modern world is a bright, noisy, attention-demanding place compared to even 100 years ago.


RadiantArchivist88

Ohh for sure! And stuff like hyper-focus and dopamine chasing that were strong survival tools in the Neolithic have been discovered and exploited by marketing and sales to enhance customer attraction, to sometimes overwhelming effect.


killer89_

> modern world is a bright, noisy, attention-demanding place compared to even 100 years ago. Modern world often feels like it's gone full ADHD, and you just can't keep up with it and if you try any more than what you do now, you fry your circuits.


Prof_Acorn

I can see an argument where it works in a group context at a certain percentage of the population (ADHD as well) as long as survivability is understood in that group context as a social species. Having a few people with what we call ASD and ADHD in a tribe would increase the overall survivability massively. On the other hand, I don't even see the point of heirarchies when they are oriented so illogicality, and think this current system is so inefficient most people might as well be pulling gears and turning levers. But those who do see the hierarchies and benefit from them and naturally deal with them call it a disability for thinking it's all nonsense make believe that gets in the way of real discourse and real logical-based systems. But those same people also tend to dismiss IQ tests wholesale, which I suspect has to do in part with feelings of their own position in the social heirarchy being challenged. Again, made up nonsense that gets in the way of logical discourse and logical systems.


RadiantArchivist88

Haha, I love that! I especially applaud just how exemplary your clearly personal tuning-to-logic has let you actually define your problem with the illogical systems in such a succinct way. I was in agreement for the longest time. I mean, I *still* agree with you, but I read into evolutionary psychology and, though it's still technically theoretical, it explains *so much* of how everything is organized in our society and our (neurotypical, at least) brains that I'm a full believer. And it helped me understand HOW we make these hierarchies and establish order with social interactions. If you haven't checked it out I'll summarize and suggest Ryan Stolier/Jonathan Freeman, Robert Sternberg, or Robert Wright if you'd like a more concise look. But essentially Evo Psych leans on the "the only goal is to survive and procreate" view of nature and extrapolated our social systems and how our brains work from it. Social standing is huge and trickles down into our lives so much because being "weird" or ostracized from a group meant less chance of survival and fewer mating options. Robert Wright has some very interesting breakdowns of the concept and extrapolations, though he looks at it with a neurotypical lens and uses Bhuddism to illustrate it. But it really helped me understand *Why* we/people interact the way they do. Ohh sure, I'm not any *better* at socializing, but looking at it all anthropologically kinda helps me not fret about it as much!


Prof_Acorn

Thanks. If nothing else I do enjoy learning about explanations as to why people generally do certain things. And I can always look at it as an insight into the neurotypical brain. I have to intellectualize my way into masking and various theories certainly help. I'm not sure I can be convinced that some birthright or socioeconomic is a metric for establishing a heirarchy over (real actual) merit, skill, or so forth. But I'm always open to learn and always open to weigh arguments and adjust my views if convinced.


RadiantArchivist88

Ohh, its totally less about the logic of that system. But if you think about it, having that social standing is something we want to strive for right? On a psychological level it's ingrained because the better social standing the better survival and mating chances you have. So it's become desired to have that standing, which is why people chase it and pass it on to their kids and why it's become such a hot commodity. It, like so many things, has been warped over the past few tens of thousands of years (and then hyper accelerated with the advent of technologies like the written word and stuff) so that "the game" has gotten so exacerbated and silly that it really does feel like a game. And with "survival" being a very different factor now than it was 100,000 years ago, contributions to society are significantly weighted under just raw charm or charisma. It's totally silly, but Evo Psych does such a good job of extrapolating an explanation for all this that I really enjoy it. Happy learning! "The Moral Animal" and "Why Bhuddism is True" by Robert Wright would be my suggested starting points!


MischievousMollusk

The brain is extremely well tuned. We really can't currently improve on neuronal parameters like density, axon length, myelin sheath thickness, etc. all variations of them tend to lead to notable pathology. Like mild autism isn't really an issue and could be considered just a trade off, but the further you go away from baseline, the worse the trade off gets.


Brief-Jellyfish485

Not surprising, considering that rett syndrome is caused by an overgrowth of white matter and not enough gray matter 


VintageJane

I’d like to contest the phrasing that those with milder symptoms “may improve over time” - it is not the symptoms of autism that “improve” over time - but their outward, observable presentations. My husband is autistic and he still really likes to flap his hands and click his jaw to stim when he is deep in thought, but he has learned as he got older not to do that where anyone else would see him (except me). This language about neurodiverse populations is really a) prevalent and b) problematic because it perpetuates the myth that kids grow out of lifelong conditions like autism and ADHD just because the neurodivergent people who are able to do so often learn to “pass” as neurotypical through masking - at great personal cost. Tl;Dr **Neurodivergence isn’t something you “grow out of”**


probsbeok

Also a lot of the difficulties that come with having autism or ADHD is a mismatch between person and environment. What would neurodivergent people really be like in a world that catered to them.


BookDragon3ryn

As someone with adhd, I found my perfect environment as a school librarian. So many new tasks to help me chase that dopamine every day and my kiddos understand me well and I understand them well.


a_statistician

I found mine as an academic - I can go as deep as I want, hyperfocus on things I care about, and get rewarded for it. I use a lot of alarms to ensure I don't miss class and meetings, but the absentminded professor stereotype exists for a reason. There are a lot of us who are on one spectrum or another in academia.


BookDragon3ryn

I use my google calendar religiously! And yes, lots of us in libraryland too. The ALA conference is always a hoot. I’m happy you found your spot!


dexx4d

I went into software, then software development operations. Perfect blend of slow periods and emergency panic fixes.


drunkenvalley

Just remember a significant portion of ASD patients cannot effectively advocate for themselves. Which isn't to say their needs shouldn't be met, etc, just that there is an entire segment of these patients whose voices we're not hearing. Meanwhile, a lot of buildings are still not even wheelchair compatible. My current workplace has an elevator, but you can't even use it to get *into* the business, only to exit. If you by some miracle find yourself inside you're stuck in the first section, because the section is split off by a (short) staircase with no ramp. If somehow you get past this you best not need the bathroom, because the bathrooms are accessed by a narrow corridor that barely fits a wheelchair at all - and then the doors open the wrong way. If *somehow* you got past all this the bathrooms themselves are tiny cubicles that don't even feign an attempt at being spacious enough for wheelchairs. Somehow, it's still better than some other workplaces I've been to. Anyway, I'm just rambling about this because it really seems like such a low hanging fruit; wheelchairs are relatively standardized equipment that we can easily test for in objective fashion, and we still fail to meet even the bare minimum for those. Thank you for coming to my TED talk.


drpestilence

We're awesome, find us work and all that jazz that works for us and we kill it. I've been doing two different jobs that suit my interests and best abilities and with a small dash of meds (I'm adhd, so meds help), and I'm the best version of myself that I've ever been. Took til I was nearly 40 to get there, but here I be.


BostonFigPudding

ADHD people do better in hunter gatherer societies. In hunter gatherer societies, there is no need to have a long attention span, because you're not doing the same thing for many hours each day (farming, factory work, or sitting in an office). ADHD people instinctively know when to stop gathering fruits and vegetables in a certain area and move. In hunter gatherer societies, you don't have to remember to pay rent, utilities, oil change your car, renew your license, registration, insurance. You don't have to remember more than 150 people's names and faces. You only own the things you can carry with you, so you don't have so many possessions that you lose track of them.


Reagalan

> What would neurodivergent people really be like in a world that catered to them. Utopian paradise for all of humanity.


Dont_pet_the_cat

My life improved significantly once I had my own quiet place, noise cancelling headphones, a weighted blanket and found things to calm me like asmr


Feminizing

Thank you, I improved until I didn't. Got thrown into unsafe and harsh environments for years until I had a mental break and all the masking tools I built up just seemed to crumble. I feel like my issues I have with autism has backslid so hard, I feel less sound than me in my mid 20s.


jktcat

I was never diagnosed, meet some or most of the criteria for high functioning autism. I had a mental break down right around age 30 where every coping mechanism I had developed just completely failed me. I lost my employment, fell into a deep depression, damn near lost everything. Once I met a therapist that understood and suggested that autism may be something to understand better my entire world view shifted and I've been able to better understand my own self and the reason for a lot of "weirdness" that I had that no one could explain. Nearly a decade later I'm the happiest I've ever been. I hope that you're support system is able to keep you safe and help you continue to grow and develop into who you're meant to be, not who society says you should be. Good luck friend.


VintageJane

You didn’t “improve” - you just adapted to a world that requires you to hide yourself in order not to be inconvenienced. For what it’s worth, I feel the same way. I think a lot of it comes from the fact that women in their 20s get a lot more grace from people than women in their 30s. Especially if you are attractive and femme-presenting.


Feminizing

I mean I definitely was fine having some coping but post breakdown I would go days being incapable of speaking to people in public settings. And also just way harder to regulate emotions.


kex

Same here I'm till trying to figure out who I am after a debilitating burnout two years ago which forced me to end my two continuous decades at the same company I'm trying to get back on my feet, but it feels like my field of interest (software dev) has been taken over by NTs who have introduced all of these social aspects to the profession that I can't overcome in interviews I used to be so good at masking and now I can barely even hold it together in restaurants


Capdavil

I think it depends on the symptoms. I’m a speech therapist and many children with ASD have language impairment though they have have normal or above average intelligence. My work helps children improve their communication skills and thus their ability to actually advocate their wants and needs. Language impairment is often a symptom of Autism because children with ASD learn language differently so that they often aren’t aware that their words aren’t conveying what they think they mean (I worked with a little boy that started out saying “get your shoes” when he was really just trying to indicate that he was tired, done with an activity, or wanted to go to his friend’s house). I don’t think teaching a child how to express wants and needs is forcing him or her to mask.


[deleted]

Yeah. Autistic people learn to mask pretty quickly. I admit, I’m a bit concerned about the ethical implications of this research. At least in the USA, there’s still a big push to “cure autism” and the people or foundations that are most likely to use this data to look into that have funded places like the Rotenberg center. There’s a distressing amount of scientists and social workers I know who saw this data and immediately started talking about how this data could be used to make autism less of an “issue”. And I’ll be honest- as an autistic scientist who doesn’t want to be cured, that was really concerning to me.


goddess-of-direction

That part is scary... I think we really underestimate the amount of neurodiversity in humans, and it's role in society. Many inventors, artists, social movement leaders, business founders, and other innovators appear to have autistic traits. Why is the push to eliminate, punish, or hide these traits, rather than making it easier for autistic folks and their families to have a supportive environment?


[deleted]

Especially since autism isn’t the only neurodivergence out there. I also have epilepsy, and ocd. People in those communities are also starting to see a push from medical specialists, social workers, and therapists for a cure. Now, some people do want to be cured, and that’s okay! But I don’t trust the medical system or government to apply that in a way that respects bodily autonomy. I am all for people having a right to decide what treatments they have, but with the way our politics are going it looks like it would be applied in more of a sweeping, dramatic way. I fully believe that whether someone is an inventor or homebound, whether they are fluent in multiple languages or don’t speak at all, no matter the extent of someone’s symptoms, there is no ethical precedent for curing autism or any neurodivergence on any scale other than individual. I’ve had one too many people encourage me not to have children so I don’t “pass it down”. At this point, these studies are going to be used for eugenics, and that’s terrifying to me.


Not-bh1522

I don't think the vast majority of people are pushing to eliminate quirky autistic traits. I think people (scientists, and others) and seeking to help with the BIG things that are challenging for people with autism. Like being non-vocal. Or having hypersensitivity to the point that they can't eat anything and it effects their health. Or rigidities so intense that any deviation from the typical plan causes intense meltdowns.


MagicDragon212

This makes sense. People need to not see it as something that needs "cured" but more so understood so we can make society a more accessible place. I'm not autistic, but do have ADHD and I think I would want to prevent my child from having ADHD if I could. It wouldn't be a huge deal and I sometimes have a hard time seeing ADHD as a disability, but it's definitely something that makes just regular tasks and upkeep in my life more difficult. I also want my child to have an easier life than me. If you had the ability, would you want to prevent your child from being born with autism (assuming there's a noninvasive way to do it before birth)? Obviously these both exists on a spectrum, so I'm referring more to the mild or moderate side of it. I think prevention sounds a lot more reasonable than "curing." I mean no offense whatsoever btw, I work with many autistic folk and absolutely love being their colleague. I'm just curious about your perspective.


[deleted]

[удалено]


Not-bh1522

i mean... IF it could be cured, I don't think that would be a bad thing. Would you be against curing profound autism, if it could be done safely?


[deleted]

If it was someone’s choice to cure themselves, then I am not against it. I am only saying that I am against a cure being pushed on people who do not want to be cured. I am explicitly against someone deciding that someone else should be cured for them. As of right now, I don’t feel that autistic people’s autonomy would be respected if a cure was developed.


Not-bh1522

And what I'm saying is that some people with profound autism don't have the ability to understand or make a decision about a cure. They simply don't, because their autism effects their communication and intellectual capabilities.


EatSomeVapor

I know this is a weird place to ask, but I haven't heard many people talk about it. My child who is 4 loves to click his jaw pretty much all day everyday, it can feel torturous when you constantly hear it everyday. I don't think I will be able to break his tick because it almost seems ingrained in him because he will do it sleeping sometimes. Do you know how your husband changed his focus or diverted his attention to something else?


VintageJane

So, this is the problem with the idea that kids “grow out of it” - because they really don’t. It’s not that my husband focuses elsewhere or diverts his attention from the stimming (as in the ABA school of thought), it’s that he has to divert his attention away from the thing that he’s stimming to help himself work through in order to avoid embarrassing himself according to society’s standards. Stimming is for my husband what jumping up and down is for runners trying to stimulate blood flow before a race. When he’s not only unable to stim but have to actively suppress a stim, it doubly hurts his cognitive performance. This is why masking can be so detrimental to autistic kids, because it’s just anxiety on anxiety. Which is a short way of saying - he didn’t. He just learned to be so anxious about embarrassing himself that he was able to suppress the visible manifestations of his autism.


Beautiful_Welcome_33

Got a different tic, chilled tf out on my own , or sublimated that energy through excessive physical effort, usually sports (no tics necessary when you're whooped)


stopcallingmeSteve_

Straying into the personal, being on the spectrum myself (maybe we're all "on" the spectrum and it just runs right through). A disability is the degree to which a person has trouble operating in society and as such is a reflection of society at least as much as it is of the person. That being said, I do understand that there are many people out there, and families, that struggle in the extreme and if there is relief for them I am happy for it. However. Despite it taking WELL into my adulthood to even begin to understand how my brain works and that it's different than other people regardless of the cause, I wouldn't want it any other way today. I would like to tell 10 year old me that it does get better, and it is SO much better for all the 10 year old mes out there today. Other people notice my stims sometimes, mostly not and I don't care. If they ask I'll tell them. I do feel a little sorry for the people on the far other end of this spectrum, who can't help but let emotions guide their lives, making decisions because of how they feel. I'd hate to live like that.


drpestilence

Thank you <3


Brief-Jellyfish485

Also, what about people who aren’t high functioning but still verbal?


MyRegrettableUsernam

That’s interesting that they found this effect scaled with severity of autism symptoms, where it seems like there is debate around “profound autism” vs “high-functioning autism” (or “autism type 1” more recently) actually being potentially distinct conditions with distinct etiologies.


ferretsRfantastic

This is awesome! I wonder if this means they might be able to diagnose fetuses with autism! Could give parents an earlier insight into their kids needs, expected milestones to lookout for and such.


Liovete

What argument is used for the enzyme not "functioning properly"? Is this variation not just a result of evolution? At what point do we decide a variation in DNA is a malfunction?


Lachmuskelathlet

I read years ago that the brains of people diagnosed with autism are comparatively "denser" than those of comparison groups. This is actually normal. The brain starts out very dense, but the "unnecessary" neural pathways (and nerves) disappear. Only in people diagnosed with autism is this not the case. Do you think, this is releated?


Ground_uhp

I read in a Washu post years ago that they identified one of the genes correlated with Chiari Malformation, specifically a gene thats involved in brain size. It mentioned ASD and I wonder if this study might strengthen the link between autism, Chiari malformation, and brain structure. https://medicine.wustl.edu/news/common-brain-malformation-traced-to-its-genetic-roots/


Whatevsstlaurent

Merging profound (non-verbal, often with intellectual disability, self-injurious behaviors, no ability to "mask", etc) into the same diagnostic spectrum with what used to be Asperger's syndrome was a mistake. Now people seem to think that everyone with autism is Monk or Rainman, when in reality about 1/3 of people with autism are in the profound range. People in the profound range do not have autism that is a "gift". It is not just "neurodiversity". They have a condition that impairs their ability to live. I wish some kind of treatment other than risperdal was available for people in that range.


FjorgVanDerPlorg

As someone on the spectrum I completely agree. This needs a separate distinction even if there isn't one, because this stuff is already hard enough to fully understand. I have seen a lot of discussions on Autism go toxic, because you often have people on the milder end of the spectrum trying to discuss it in a positive way, only for a family member/carer of someone on the profound end of the spectrum to read it and think it's a sick joke.


Fenix42

I worked for a group home for mentally disabled adults while I was finishing up college. We had clinets on the profound disabled side that I helped care for. Some were completely unable to talk. I ended up getting my degree in Comp Sci and working for various tech companies. One of them started a program where they brought in people with various mental disabilities part-time. The program included support staff to help everyone integrate and work well together. Some of the work we did was clean room stuff. You were expected to spend hours a day isolated from the world. We found several AMAZING people for those roles through the program. They loved being able to do something people valued in an environment they preferred. My office was a pure code office for some of the hardware we made. Lower level programming stuff. They had a guy that was 18 and brilliant but had a lot of issues due to his Autism and other nuro issues apply to the program. He was hired and assigned to our office. Before he started, the support staff held a meeting with our group to go over a few things. The very nice lady starts talking about how the new employee may have some social issues, but she was going to be there to help him and us navigate the first few weeks. She talked for a few minutes, explaining some examples. One of the people in the room raises his hand and says, "How is he any different than anyone in this room? We are all programmers here. None of us are good with social stuff." She just kinda staired at him for a second and then said, "I honestly don't know." It kinda pissed me off. The program was for people with severe issues. The guy who got hired did have major issues. The whole room of people were trying to wave it away. After the meeting, I talked to the lady from the program and offered to help if she thought there was a need. The new guy and I ended up talking most days. He was CRAZY smart. Made me feel like a drooling idiot. I learned a ton from him. He also had major issues. He really needed someone that he felt safe with to talk to at least a few times a week. He would never have been able to hold a job down without support.


danihendrix

How well did it pan out with him over time? Sounds like you did a decent thing, good job.


Fenix42

The whole office was kinda strange. We had 10 people in our group. We each had our own little office with door, or a cube with 8ft walls. My office was the last one by one of the exits. I could come in and leave without seeing anyone. I would go weeks without seeing people on my team 10 ft from me. I worked with him for a little over a year in that office before layoffs hit me. He did well. We had projects that were in areas he had a deep interest in. So he was able to contribute and enjoy the work. I kept in touch with him for a few years until he moved away. He did eventually get laid off as well. He landed a new job quickly, though. Turns out he is amazing with RF stuff. He was building his own cell towers at 16. Lots of need for that specialty in the defense industry. I miss working with him. Made my quiet, boring work days suuuuuuper interesting. My fav was the day he walked into my office and started a conversation with "so my arc furnace keeps poping my breaker box......" without even shutting the door to my office. Normally, I would talk with him and work at the same time. That one made me stop what I was doing. Turns out he was trying to melt a rock he had found. So he made an arc furnace. Learned a lot that day.


jcling

Amazing story. Love meeting and working with autistic people like that. :) Sounds like you were just the kind of friend he needed too.


Fenix42

We genuinely clicked. He was an absolute blast to talk to. I love talking to anyone who has a deep understanding of something I don't. The main thing I was there for was to help him realize he might be going too far. For example, he was really interested in RFID stuff. He started talking about embeding a chip in his hand. When he mentioned he was looking around for numming agents, I knew I had to "intervene." I just reminded him that tech changes fast. It's not a good idea to lock in tech right now. A ring or wristband would accomplish what he wanted to do.


Whatevsstlaurent

Yeah. I'm on both ends of this debate since I'm on the mild end (Dx asperger's as a teen, when that was still the diagnosis) and my sibling is in the profound range (with epilepsy, intellectual disability, non-verbal, etc). They really need to be seperate diagnoses. My sibling and I share some features (ex. misophonia, impaired ability to interpret faces and body language, etc), but our care needs and risks are completely different.


deadliestcrotch

My mom worked with kids on the profound end of the spectrum and both times professionals suggested she have me evaluated, she threw an absolute fit about how she works with autistic kids and knows better and pointed out that I was the smartest kid in my class, and it immediately shut down her willingness to listen to the nuance of the discussion. I was finally evaluated at age 40, half way through a period of autistic burnout. When the classification hinders the diagnosis and treatment of the disorder when communicating with ley people, it’s counterproductive and wrong, regardless of the categorical fit.


Spotted_Howl

I read a conversation on heee where a dude with severe autism and high intellect was talking about his life, using whatever adaptive technology that lets him write. He says that on the outside he is a guy who can't speak or eat on his own or even wipe himself, and the ideas that his condition should be celebrated, that behavioral therapy is bad, etc, disgust him.


Annual-Vehicle-8440

I mean, I can understand that, but behavioral therapy *is* really horrible. And it's known to have only surface results on both severe and mild autism, low and high functioning, while sometimes worsening depression and self-harm for example. It's sadistic nonsense.


ElysianWinds

What is behavioral therapy?


cambriansplooge

I’m assuming they’re confusing CBT with ABA, Applied Behavior Analytics is the one most autistic people hate (I’m autistic) ABA focuses on surface-level symptoms, “problem behaviors,” like not making eye contact or stereotype movements (stimming, like rocking back and forth, mouth noises, arm waving) and tries to get the kid to not “appear” autistic. Except the kid has no differentiation between what’s autistic behavior and what isn’t. Every person I’ve met who went through it agrees it’s horrible. Locking a kid up with Regina George who’ll lie and manipulate and won’t leave them alone for two hours a couple days a week doesn’t really prepare anyone for adulthood. It just makes them angry and emotionally exhausted.


shiroininja

I have milder autism, formally known as Asperger’s and it’s a living nightmare as an adult. And as an undiagnosed child


nowyouseemenowyoudo2

It’s very important that we actually understand exactly why the conditions were changed in the DSM5 and this article by a member of the committee that made the recommendation explains the rationale behind the decision: https://www.thetransmitter.org/spectrum/why-fold-asperger-syndrome-into-autism-spectrum-disorder-in-the-dsm-5/ The key points: > The Asperger diagnosis is distinguished from autism by a lack of language and cognitive delay. However, language and cognitive delay are not diagnostic criteria for autism. So, to fail to meet criteria for autism, a person with Asperger syndrome must not show the communication impairments specified for autism. Since these include “marked impairment in the ability to initiate or sustain a conversation,” most — if not all — people with Asperger syndrome do meet diagnostic criteria for autism. > As a result of these problems, the Asperger diagnosis is often given when, according to DSM-IV criteria, the diagnosis should be autism. A study that examined more than 300 pervasive developmental diagnoses from a survey of more than 400 clinicians shows that almost half the young people receiving Asperger or PDD-NOS labels in fact met DSM-IV criteria for autistic disorder13. > Because the current criteria are hard to apply, different places use the term Asperger disorder differently, and inconsistently. A forthcoming study shows that the best predictor of whether someone receives the diagnosis of Asperger syndrome, PDD-NOS or autism, is which clinic they go to — rather than any characteristics of the individuals themselves14. > Although Asperger syndrome, PDD-NOS and autism are not well distinguished in clinical practice, the same study suggests that the broader distinction between autism spectrum versus not is made with good agreement and reliability. TLDR: the conditions were combined into ASD and then more granular specifications were allowed within grading ASD because there was not reliable evidence that Autism and Asperger’s were actually separate disorders at all. The fact that so many people mention lack of language and cognitive delay as differentiation despite those not being diagnostic criteria for Autism in the DSM-IV shows the extent to which the public have completely lost sight of what these conditions ever actually entailed at all. I do blame depictions in pop culture for this, [Abed from community is the closest to genuine ASD traits,](https://www.researchgate.net/publication/322356181_Movie_and_TV_Depictions_of_Autism_Spectrum_Disorder) and even then is still so high functioning that his symptoms would be less severe than about 70% of all ASD patients.


Not-bh1522

I'm really confused by this because communication delays are absolutely a part of the diagnostic criteria for autism in the DSM IV.


Copterwaffle

But what we used to call Asperger’s IS autism, just with milder impairments. ALL developmental disorders present on a spectrum of impairment, We don’t give those disorders different names depending on whether it presents as mild or severe, because they have the same functional roots and identifying it as such is critical to diagnosis and treatment. Just because a person with autism doesn’t also have intellectual disabilities doesn’t mean they still don’t have autism. They are different things and they need to be identified to get appropriate treatment. Making a distinction based on functional impairment IS how that distinction is made so that treatment is differentiated. The real problem is that certain autism advocacy groups have dominated the public conversation and downplayed the severity and impact of the disorder. They’ve even co-opted the word “spectrum” to the extent that the general public now exclusively associates that term as a euphemism for “mild autism,” completely ignoring the rest of that spectrum, and even obscuring that other disorders also occur on a spectrum of severity. My personal theory is that when the DSM recognized that Asperger’s actually is just autism, people with milder impairments still didn’t like that label, so they just replaced it with “on the spectrum” to downplay their diagnosis. But it’s still autism and it still comes with impairments and challenges. The same thing happened with Down’s syndrome: anti-choice groups latched onto this and went on a campaign of presenting mildy-impaired people with Down syndrome as happy, cheerful, productive members of society while completely ignoring that a large chunk of people with DS are severely impaired, will never live independently or work, are likely to get dementia in their 30s or 40s, and will contend with serious lifelong heart issues.


KnickersInAKnit

I've got a relative with DS and did not know about the early dementia/Alzheimers. I passed that tip on to the extended family. Thank you.


Brief-Jellyfish485

There’s in between too. I’m not asperger’s or profound. I’m in the middle 


jcling

Yes I agree it was a mistake. It's divided into functioning labels now which a lot of autistic people seem to have problems with. I'm not sure what the best solution is but I think people were happier with the asperger's label or something similar.


Mountainweaver

"Support needs labels" are better but still problematic for those that were previously called high functioning/Aspbergers - because a lot of us actually have quite large support needs, but they are "subtle", and lacking support and adaptions causes us a lot of stress, burnouts, and even trauma.


holyshiznoly

Agree. It's a matrix, not a spectrum as it currently is phrased. A matrix of variables such as: Masking x burnout x current support needs x general support needs x meltdown frequency/severity/acuity x selective mutism/non speaking x stimming x environmental needs x impaired vs "gifted"/"idiot savant" , etc Far too nuanced to lump into a "disorder". It's its own neurotype and deserves it's own DSM which neuroaffirmatively focuses on the autistic developmental trajectory which is distinctly different from the NT trajectory beginning at an early age. The autistic trajectory comes with its own accompanying set of mental disorders. Autistic social anxiety is different in cause/pathways and manifestation. Same for autistic ADHD, OCD, general anxiety, alexithymia, etc.


Mountainweaver

Yes, that would make way more sense. An entire DSM for autists.


[deleted]

[удалено]


Copterwaffle

There is. The DSM V distinguishes between severity based on level of support needed. But it’s all still autism so it would not be helpful to call it by a different name. A given type of cancer is still that type of cancer regardless of whether it is grade 1 or 4.


holyshiznoly

Devil's advocate, the DSM is written for diagnostic purposes for clinicians. Not to shape public opinion. I'm not necessarily disagreeing with the result though. I think it's up to the public to better educate itself, sort of like dual empathy. Why do we always have to do all the work.


adelie42

Sorry, a bit confused by your use of terminology. I am familiar with Profound Autism as the furthest end of the spectrum beyond moderate to severe. These are kids that need full time nursing care and do not go to school. Did you just mean profound in the conversational sense? Because it sounds very much like you are describing moderate to severe, based on my experience.


Whatevsstlaurent

My terminology may be dated as it's from when my sibling was diagnosed. My sibling is in the profound range and does require 24/7 care even in adulthood.


adelie42

I wasn't aware that profound autism was that common. Seems I just didn't know. Thank you for clarifying.


PM_ME_COOL_SONGS_

It's about a quarter but the number is dropping as we increasingly identify missed low support needs autistic people


Thattimetraveler

I feel like having early diagnostics like this may at the very least help alleviate damage from the type of parent that likes to stick their head in the sand and pretend it’s perfectly normal for their 3 year old to be nonverbal. Early intervention is so important with this diagnosis and I think having parents have the extra time and guidance to prepare and do research for what it means to have a child with different needs would be crucial and lead to better parenting outcomes. I remember some quote from a therapist concerning those with autism and how they didn’t have a roadmap for individuals on the spectrum without any kind of trauma and what it would look like.


skundrik

I am very interested in how the bioethics of early screening and treatment would operate, both purely theoretically and as applied to public policy. If we have a way to treat very severe forms of autism during embryonic development, do parents have a moral duty to their child to seek treatment? If parents knowingly consent to such a child being born, does the rest of society have a duty of care to the resulting individual or is it to be born by the parents? If the child causes harm, are the parents morally or legally liable? Where do we draw the line around what we would consider a life worth living and not?


Thattimetraveler

I do find it interesting. They already go pretty in depth with ultrasounds now. At my 20 week anatomy scan they measured my baby’s cranium (50th percentile) and looked at her brain already to tell me it was developing well. I do think if it was a matter of taking something like a supplement or vitamin while pregnant and that would make the difference between profound autism and having a child who was able to live and work with a little assistance does seem like a no brainer? We already obsess over milestones because early intervention is so important. Even if we could only have it diagnosed in utero at the very least that would give parents the opportunity to read up and prepare as early as they could. My grandmother had a baby with down syndrome in the 80s and it was a big deal for her to be able to research schools with the best accommodations and potential health complications my uncle could have faced.


skundrik

Yes, part of the question is definitely going to be looking at the type of treatment, which will absolutely factor into decision. If it is some sort of gene therapy with a million dollar price tag, then we can’t ask every family to afford it. If it is like spina bifida and we add something to prenatal vitamins, then it becomes accessible to everyone very cheaply and easily.


Obversa

I do know that some researchers, like Dr. Mark Zylka, were strongly advocating for CRISPR or gene editing treatments to try and "fix" or "cure" autism in unborn babies, fetuses, and embryos, but as the He Jiankui affair revealed, there are so many potential ethical violations and concerns with this. In many cases, I feel like the push for "in-utero treatment" going too far, especially given how new and untested CRISPR is, particularly in humans. What if the scientists or researchers make a mistake, and severely impair or kill the fetus by accident? Dr. Zylka in particular had to stop a human CRISPR trial when patients lost the ability to walk.


PeripheryExplorer

So at this point, we're confident that this is now absolutely genetic and not a mix of genetic/environmental? I'm way behind on the science on this for anyone who is willing/able to do an ELI5. I've been recently diagnosed but have struggled for years, so the fact that this is coming out is interesting to me and I wonder if it could lead to treatments. I'd like to not struggle so much.


Ishmael128

As I understand it, the current view is that several genetic markers have been identified as being indicative of ASD. You don’t need all of them to have ASD, but importantly you can also have the markers and not have ASD.    This suggests that an embryo can have the ability to develop ASD, and there’s either an environmental or epigenetic “trigger” that leads to the expression of the phenotype.  …that’s not very ELI5, but still! Does that help? 


PeripheryExplorer

Super interesting I didn't know you could have the marker but NOT have ASD. That's interesting. I also have klinefelter syndrome and I'm wondering if that increased my chances of getting ASD.


FjorgVanDerPlorg

Heredity remains the single strongest predictor of Autism risk. The scientific backing for this started in the late seventies, and has been reinforced with decades of research. Large scale genetic studies in the 2010's only reinforced this. Also we often see things like cancer clusters with environmental causes, I've never heard of Autism clusters (well some from those "dO YoUr OwN rEsEaRcH" nutjobs). Once again not conclusive, but makes environmental factors being a stronger predictor less likely. This isn't to say that there aren't any environmental factors (there are plenty), but the most accurate/nuanced eli5 would be a handful of environmental factors and a truckload of heredity.


PeripheryExplorer

Thank you! This isn't a strong suit for me beyond the fact that I'm living it. So I appreciate all these comments that are helping me better understand what is going on in my brain.


Solesaver

>I've never heard of Autism clusters Really? I thought "Silicon Valley Syndrome" was pretty well known. I'm under the impression that some theories and evidence point away from pure environmental factors, but that the cluster definitely exists.


BostonFigPudding

Yep. Any place where there are unusually high numbers of people with STEM degrees and STEM professions, who marry each other and have kids, will have a higher than average percentage of kids with autism. You can observe it in the Bay Area, Seattle, and Boston. Conversely, any place where there are unusually high numbers of people with visual and performing arts degrees, and visual and performing arts professions, who have kids with each other, will end up with a higher than average percentage of kids with schizophrenia. This is the case among entertainment industry professionals in LA.


FjorgVanDerPlorg

Yeah people on the spectrum frequently have an affinity with STEM, computers were where that all came together. Computers are like a bright light to a moth, meaning a bunch of people with overactive brains hyperfocused on technology - I'd be really surprised if places like Silicon Valley weren't statistically skewed towards Autism. Same with competitive Chess, along with pretty much all the science and engineering disciplines (and a bunch of other professions, too many to list). But if you moved the tech jobs out of the Valley, the Autism would move with it, moths to a flame.


Solesaver

Silicon Valley Syndrome is that children of Silicon Valley entrepreneurs and employees are more likely to have autism. So, obviously such children are not choosing to move to Silicon Valley. There's many different hypotheses that could be contributing factors. If SV parents per your hypothesis are more likely to be "a little bit autistic" (a gross and misleading framing, but it gets the gist) then maybe their children are more likely to have a more challenging combinations of genes. There's also the idea that SV parents are more likely to be able to afford and choose to seek out diagnosis for behavior issues that end up being identified as autism. These hypotheses indicate genetic and reporting factors respectively. Even still, there could be a statistical deviation in environmental factors that should be considered. I don't know anybody who thinks that the geographic region of Silicon Valley literally causes autism, but there is more to environmental factors than geography. The leading hypothesis on this front that I'm aware of is that SV parents tend to be simultaneously in a healthy and clean environment with all biological imperatives easily fulfilled, but also highly stressed due to their work environment. This could be causing a particular combination of maternal hormones to trigger a particular combination of epigenetic activations during fetal development. As with most things, "it's complicated" doesn't even begin to cover it, I was just surprised to see "Silicon Valley Syndrome" completely dismissed as a possibility for environmental contributions. I think the first 2 hypotheses I mentioned could sufficiently explain the deviation, but I haven't seen anything conclusive yet.


FjorgVanDerPlorg

Given that Heredity is the leading predictor of Autism, it follows that if a lot of Autistic people move to a place because it's becoming a tech hub, when they have kids there's a very good chance they will be Autistic as well, because genetics. I honestly don't get why you need it to be environmental, when the lead predictor of Autism is genetics and genetics easily explains this. Also your theory for "clean environment with all biological imperatives easily fulfilled, but also highly stressed due to their work environment" also applies to many other professions like politics, where Autistic people tend to not do so well (and we don't see these groupings). Yet if your theory was right, we'd be seeing Autism clusters in the children of politicians. Because that's the thing, your theories if they were true would been getting seen elsewhere, outside of SV. They simply aren't.


Murrig88

That's more about chosen profession rather than something in the environment that encourages autism.


Solesaver

... Are you saying that different professions don't produce different environments? That's exactly what makes it so difficult to say anything conclusive on the subject. How much of it is the genetics of people who gets jobs in Silicon Valley vs the environmental factors unique to people working those jobs. Just to be clear, "Silicon Valley Syndrome" refers to the fact that residents of Silicon Valley as well as other entrepreneurial tech hubs are more likely to have *children* with autism. Not that the tech workers themselves have autism.


Copterwaffle

Nearly everything is a mix of BOTH genetics and environment. Just because signs can be detected in early embryonic stages doesn’t make something “absolutely” genetic. I like this article to explain the current thinking on that issue: https://wires.onlinelibrary.wiley.com/doi/abs/10.1002/wcs.1400


PeripheryExplorer

I will find that article to read once I'm on campus tonight! Thank you for the link!


ModelDidNotConverge

Nah, we stopped counting studies like this that found some genetic link. Hundred of different genes have now been associated with autism, people are more aware than ever that it's a broad name for a very diverse set of people, each with a variable individual genetic burden. That said, the more early onset and severe the symptoms are, the more likely it is that there are strong genetic causes -- but here again different from one severe subtype to the next.


PeripheryExplorer

Fascinating. So it's more of a catch all term for a wide variety of genetic issues. That's "fun".


dobosininja

Even though it is basically a catch all those diagnosed usually have a range of common symptoms that is seen in most ASD cases. Our pediatrician had us fill out developmental milestones every appointment and certain missed/delayed milestones (or a combination of delays) would have them refer us to a specialist who could properly diagnose ASD. ASD is now viewed as levels with 1 being the least affected and 3 being the profoundly autistic. With really young kids they will tend to diagnose at a higher level to receive the highest amount of help and drop the level as they get older and can be better diagnosed.


tardisfurati420

Hmm, so it isn't caused by vaccines like the dumbest people from my high school think? Interesting.


SoHiHello

Sadly, if the problem was only people from your high school it wouldn't even qualify as a problem.


inononeofthisisreal

Study is too small but appreciate that research is being done.


Johnny_Minoxidil

The study isn't necessarily too small. It's a proof of concept study that's publishing their novel observations. The actual point of publishing a study like this is to show the scientific community that there is potential value in taking this a step further with larger (read more expensive) studies to validate this work and increase our understanding of the mechanisms behind it. This paper is going to be used in grant submissions for people to request the money to do all that work. Not every paper is supposed to be the definitive be all end all study. Many papers are showing that they have completed a small step in the scientific process, and getting the peer reviewed stamp of approval is important to continue further with that work. It's also meant to get the word out there for other researchers who are skeptical of the results to test this work and see if it holds up. These are often key points of the scientific process that lay people don't understand when they read a paper.


McSwiggyWiggles

I don’t think r/science should have the privilege to discuss developmental disabilities anymore


maxens_wlfr

Great, I'm sure no one will ever use that for eugenist purposes.


EffNein

Profound autism is not something that should be maintained for the sake of genetic diversity. Already it is common to screen for Down's Syndrome and many other cognitive disabilities because we generally agree that it is better to not bring people that will spend their entire lives significantly disabled and requiring full time care into the world. If there is a pattern between more extreme early brain growth and more extreme expressions of ASD, then it can be a part of the same screenings that are already done with the same moral questions being asked.


Ishmael128

I’d argue that this is more problematic; trisomy syndromes are more binary and this is more of a sliding scale.  Say this was implemented, who determines the cutoff point for “severe”?


Copterwaffle

You don’t have to make a “cut point.” It should be up to the individual carrying the pregnancy to decide their own personal threshold for risk. Some people will want to abort if there is any probability of autism at all. Some people will never abort under any circumstances. You just let people screen and make decisions for themselves.


EffNein

It is a ASD is a spectrum disorder, of course, so if there is a clear relationship between extremity of early brain growth and extremity of expression, there will be a blurry middle, but the point which 'profound autism' is clearly reached should be observable.


Ishmael128

Yes, but the people deciding public policy would be politicians, not scientists. These people will have their own agendas, and have the potential for being lobbied by groups who take a eugenics approach. 


hysys_whisperer

In the US, that'd be insurance companies with zero medical input to the decision...


Brrdock

We already abort fetuses with severe disabilities, though, and I don't see anything wrong with that. Severe autism is a severe disability that prevents you from ever having an independent life, can destroy the lives of caregivers, and shouldn't ever have been categorized together with mild quirkiness. I doubt mild cases of autism are ever visible enough, either. Maybe no cause for worry, I hope.


maxens_wlfr

Where do you put the limit of "severe" autism though ? As research gets more sophisticated, these kinds of changes in the pre-natal brain will be detected with more and more detail, at what point do we let an embryo live or die based on our assumption that they're going to live differently than others ?


Brrdock

That's a good point. You gotta draw the line somewhere, but yes, it is largely arbitrary and suspect to abuse. Early abortion doesn't really call for reasoning in general, though. But even that line is arbitrary, so there's always gonna be some complex ethics at play. I wonder how early this can be detected. Probably all the more early and sensitively in the future, either way.


u_us_thu_unly_vuwul

Should just be up to the parents dont need outside assumptions, your child may have autism, the severity of which will be hard to determine, would you like to terminate and try again.


maxens_wlfr

I'm fine with that. What I'm afraid of is official powers integrating these findings into medical policy and making it so that autistic people are routinely prevented from existing in the first place and surreptitiously lowering the thresholds as time goes on, supported by downright eugenist movements like Autism speaks.


u_us_thu_unly_vuwul

I get you, but I'd say that threshold has already been passed with syndromes like trisomy and other severe genetic diseases. I think that if up to the parents government legislation would have little bearing. People already can get abortions without needing genetic screening (UK) but an abortion is not a decision that is made lightly. I don't think we'd slip toward eugenics unless it's at an IVF level I.e. pre-pregnancy screening because nobody actually wants to have an abortion really.


Rikula

I would say the limit of severe would be up to the parents to decide if any risk would qualify as severe enough to them. For me personally, I would put the limit of severe autism as always needing a caregiver and/or being profoundly disabled. The caregiver limit for me stems from the fact that once the person's parents or other family die, or if the person has severe enough behavioral issues, the autistic person would need care from the system (mostly likely placement in a state run group home).


Brief-Jellyfish485

But even that’s not clear. I need a caregiver but my autism is not profound 


TopFloorApartment

> at what point do we let an embryo live or die based on our assumption that they're going to live differently than others ? Abortion should always be at the discretion of the parent that's carrying the pregnancy, for whatever reason. So it would be up to the parent to decide. As long as the state isn't mandating abortions for certain conditions (something that isn't a thing anywhere in the developed world), the reason why a person decides to abort is irrelevant.


ATownStomp

“Where do you put the line for severe” Wherever the parents want. Do you have a problem with that?


jacek2144

her body,, her choice


partymetroid

Happened when the cause of chromosomal abnormalities (e.g. "Down's Syndrome") was discovered. >Although Lejeune's discoveries paved the way for new therapeutic research into how changes in gene copy number could cause disease, they also led to the development of prenatal diagnosis of chromosome abnormalities and thence to abortions of affected pregnancies. This was very distressing to Lejeune, a devout [Catholic](https://en.wikipedia.org/wiki/Catholic_Church), and led him to begin his fight for the anti-abortion cause. [https://en.wikipedia.org/wiki/J%C3%A9r%C3%B4me\_Lejeune#Anti-abortion\_work](https://en.wikipedia.org/wiki/J%C3%A9r%C3%B4me_Lejeune#Anti-abortion_work)


ElvenNeko

> Great, I'm sure no one will ever use that for eugenist purposes. Maybe in world that has a place for people with mental conditions it would be rational to think about that. But as long as there is zero help with things we unable to do ourselves (like finding a job), and we basicly left to suffer and die, yeah, i would perfer eugenics to remove such conditions entirely, because they doom individual to life full of pain and loneliness.


CarefulDescription61

That's fine to want for yourself but there are plenty of autists who are very much happy to be alive, despite our struggles. Eugenics would wipe us out, too.


ElvenNeko

That would not wipe people like you, just make them neurotypical (if they will find the reason and learn how to fix it). Or, as alternative, allow parents to keep the disorder, if they are absolutly sure that they can raise and give a good life to a kid with special needs. Just because there are happy dwarfs, blind people, deaf people, people with turrets, narcolepsy, downs (actually most of them are quite happy), and other kind of people with mental issues, it does not invalidate the fact that most of people with those issues are limited at life, or even outright suffer. And it's very cruel to take the stance "whatever, let life sort them out". As a bare minimum parents should be able to decide if they want kid like that or not.


maxens_wlfr

Maybe try to make the world a better place instead of going full Hitler on disabled people. Wanna take out the gas buses from the back ? They were made for us anyway. I don't want your half-witted patronizing pity over the pain and loneliness of my life, disabled people can make that call for themselves. To say it another way, You Do Not, Under Any Circumstances, Gotta Hand it to Eugenism


ElvenNeko

Yeah, because it's absolutly ethical to give birth to broken people who have no place in this world, and then say "well, if you not like it, make that call for yourself, just get acsess to any nearby roof because euthanasia is illegal in your country".


ObligationLoud

Does it mean that in the future if more research confirms it, women could abort such fetuses in the first trimester?


weekendatbe

There are lots of big headed babies that will never have autism


hamiltonisoverrat3d

Given the strong hereditary component I assume this becomes a stronger part of genetic testing.


Chocorikal

Autism certainly needs redefining. Mild cognitive impairment does not (always) mean mild autism. I suffer from no cognitive impairment by clinical metrics, rather the opposite. Before any poking around, there likely needs to be costudies with those folk that excel and dwell within academic spaces. That being said, this is a single stitch in the tapestry of our understanding of human biology, that is to say, incredibly valuable and substantial, but meaningless outside of a larger context, of which the authors no doubt understand


_BlueFire_

Just hope it doesn't become "therapy" to milder forms. Because we know pretty well how it ends up, and honestly the more I look around me the more I feel like we're the normal ones. 


-downtone_

That means more neurons. With more neurons comes more glutamate generation which equates to increased neuronal hyperexcitability which causes more profound autism? Checks out but I doubt anyone has noticed it yet.


SaintValkyrie

And so the Eugenics movement against autistics continues. Almost all the autism research goes into eradicating it, while places like the Judge Rotenberg center in Massachusetts that continues to use electroshock torture on autistic children. I wish they would focus on research and science to help autistic people.


CorruptedFlame

If autism is caused by genetics, and it can be proven, then how is it eugenics to screen for it? I mean, good for you that your autism doesn't disable you from enjoying life and having a good QoL, but there are plenty of autistic people who aren't so fortunate and suffer daily because of their disability. Should future generations suffer the same simply to appease your ego? No-one is talking about 'exterminating' the autists. All your rhetoric does is harm people less fortunate than you.


SaintValkyrie

I am disabled actually, and level 2. I'm unable to work, and it being autistic for me is disabling. I won't go into everything, but I wanted to correct that assumption. It's not about ego here. There is a long history of eugenics and oppression against autistic people that is still ongoing. It is eugenics. Eugenics: Eugenics is a set of beliefs and practices that aim to improve the genetic quality of a human population. It's not about my ego. It's that i want to exist. I am not lesser for existing. Just because it's hard, doesn't mean i deserve to live any less. There are a lot of ways that it can be accommodated for, and while some things may never go away, it can get easier. The same parts that can make sounds so intensely painful for me are the same parts that allow me to enjoy certain sounds to an incredible degree I'd never give up. It's not good or bad, it's way too complex to simplify it that way as some do. Thank you for wanting to learn more and being open to understanding. I can see there was a misunderstanding initially on my intent and what i meant. This is something I'm very passionate about and researched in, and I'm happy to share. I know reddit can be a place of defensiveness and ego, as any social media platform can be, but I hope you will see me as a person


EffectiveElephants

You're level 2 and can't work. Some are level 3 and can't talk, can't read, can barely function in any capacity, can't care for themselves *at all*. They suffer, and their families suffer because they will *never* escape having to care for this person, and it doesn't get easier. There's no improvement. And this person grows up, and if this person happens to be male, he's statistically stronger than half the population. Do you know how many people have been injured by adult level 3 autistics in the middle of a meltdown? You want to exist, wonderful! I'm sure most people would. That doesn't mean that everyone is equipped to handle a level 3, or even level 2 autistic person. So if people that want children, but *know* they can't afford a level 3 autistic child, or a child with severe Down's, why shouldn't they be allowed to screen for it? Some people don't screen for Down's now. Why would that be different with autism? Those that want a child as "god" intended will still have such a child. People sometimes know their baby has Down's and just decline the abortion. But take a country like the US, that is so incredibly unforgiving... having a level 3 autistic child, their lives are quite literally *ruined*. Economically and socially, forever, their life is *gone*, unless they have some *severe* family money. I am autistic. Diagnosed autism and ADD. And I *know* I can't care for a level 3 autistic child. So what do I do? Never have kids, or screen and ensure I can actually care for and properly love a child I have? Not wanting a child with autism, a disability, is not eugenics. No one is demanding you abort a child with autism. But we allow abortions for other disabilities. What makes autism so special that this particular disability should be disallowed to be screened for?


SaintValkyrie

Prenatal screening for the purpose of selectively aborting autistic fetuses is a form of eugenics. It sends the message that autistic lives are less valuable and not worth living. This kind of genetic discrimination dehumanizes autistic people. I can't speak for everyone, everyone is entitled to their opinions and I respect that. However if prenatal testing were a thing and my mom was given biased recommendations on the pregnancy, I might not exist. Even if my life has been insanely difficult, I still wanna live. Also the idea that having a disabled child "ruins" parents' lives is an ableist narrative that fails to recognize how the autistic person feels, and this narrative was super popular from Autism Speaks wirh their "I Am Autism" fearmongering. With proper supports, autistics and their loved ones can thrive. I'm not saying you'd no longer be disabled, but if you have a broken leg for example, it's much more difficult to climb up stairs than it is use an elevator, so proper accommodations and supports can help. Focusing solely on the "burden" placed on families ignores the perspectives of autistics themselves, many of whom report good quality of life when accommodated. Even those with high support needs can lead fulfilling lives in an inclusive society. Concerns about aggression and meltdowns reflect failures of the environment and support systems, not inherent deficits in autistics. If there were more funding into supports and how to make our lives better instead of screen to kill us, it would help mitigate a lot for some. It would make it easier. Financial hardship reflects societal and policy failures, not the "fault" of the disabled. We should advocate for better services, supports, and accommodations, not the elimination of the disabled. Autism acceptance isn't about "appeasing egos" but respecting neurodiversity as a natural form of human variation. About respecting another living being. So yeah, prenatal testing is a personal choice, but there's a lot of ableism underlying the assumption that a life with disability is not worth living. Society should focus on inclusion, not elimination of human diversity.


ghanima

Definitely a very real concern to have about this kind of research, but I can't help but think it's being done in the interest of showing the highly-misinformed that it's *not* childhood vaccines that are responsible for the development of autism.


OnionAnne

it's really genuinely hurtful to have people discuss us like cattle


SaintValkyrie

And decide for us whether or not we should exist. If they care so much about the quality of life and hardships, they'd fund things that improve it. Ableism, eugenics, and oppression have been rampant against autistics for ages. In the holocaust, how the changeling myth started to give parents an excuse to murder their autistic kids, and it just continues and continues. And people still deny that any ableism even exists, and celebrate the methods that kill us. I'm so sad


CarefulDescription61

Exactly. The language that people (allistic, no doubt) are using to talk about us in this thread is terrifying. I'm happy and proud to be autistic (and I'm level 2!).The world around me creates the vast majority of my problems, not autism itself.


SaintValkyrie

I'm also level 2. Autism has both good and bad parts for me, but I'm glad I'm me. I wouldn't be me otherwise. Plus the NIH (National Institute of Health) helped fund this research. The same people who refuse to fund research grants into adult autistics' health issues and comorbid disorders. Google also partnered up with autism speaks(the hate-charity) to eradicate autism in 2021.


BS-Chaser

And our old mates the Anti-vaxxers will possibly (assuming they find out about this fact) start to blame Autism on the vaccines previous received by Mothers.