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Identical twins both grew up with autism, but took different paths
- Jovita111 2y ago[flagged]
- hiciu 2y ago> identical twins at opposite ends of the autism spectrum. I understand this is just a figure of speech, but this wording suggests that there are "two ends" of the spectrum and (as I understand it) autistic communities are trying to fight that myth.
- kthartic 2y agoAs a laymen, isn't the spectrum just 'less autistic tendencies' and 'more autistic tendencies'? Is this a myth, or does the spectrum refer to something else? I was always under the impression that some people could be more autistic than others.
- __s 2y agoThere are multiple dimensions https://getgoally.com/blog/autism-spectrum-wheel https://getgoally.com/blog/autism-spectrum-wheel Along with many comorbidities (adhd, ocd, depression, etc) which are more likely but not requisite This leads to the saying "if you've met one person with autism, you've met one person with autism"
- deleted 2y ago[deleted]
- posix_compliant 2y agoThen the spectrum would refer to the magnitude of any vector in multidimensional “autism space”.
- __s 2y agoSure, but saying two people are the same magnitude is very different from saying they have the same level of touch sensitivity Two complex numbers can have the same magnitude & be very far apart. Assuming we stick to the positive/positive quadrant it's not so bad. This metaphor (which, the spectrum itself is a metaphor, making this a metaphor of a metaphor) is to a 2d space tho, complex numbers are much more comparable based on magnitude as a result
- thaumasiotes 2y ago> Two complex numbers can have the same magnitude & be very far apart. Only if their magnitude is large; the maximum possible distance between two complex numbers of equal magnitude is double that magnitude. And this limit is independent of the number of dimensions in the space you're working in; no two equal-magnitude vectors are ever farther apart than opposite vectors are. If you stick to the first quadrant / octant / whatever n-dimensional division of space where all coordinates are positive... I don't think the number of dimensions makes any difference there either? Any two vectors define a plane (or a line, or, if they're both zero, a point), so two vectors in a 500-dimensional space can't be farther apart from each other than is possible for two vectors in a 2-dimensional space. Those 500-dimensional vectors are already embedded in a 2-dimensional space.
- Tarq0n 2y agoThe question is whether each dimension is equally clinically significant, or equally impactful to quality of life. Talking about magnitude is definitely taking the analogy too far, as temping as it is.
- kenjackson 2y agoI think the point is that the magnitude being the same doesn’t necessarily mean their distance is zero. I think the rest isn’t relevant.
- SiempreViernes 2y ago"very far" is of course relative: if we have tree vectors, two of length R and one of length 0.99*R, it's not outlandish to call the distance 2R between the two vectors of equal magnitude "very large" compared to the distance 0.01R between two vectors of dissimilar magnitude. Your last comment is completely incorrect, for a point at (1,1,1,....) each extra dimension adds a constant 1 to the euclidean distance, so that in 500 dimensions a point at (1,1,1,....) is around 22.4 units away from the origin, while in two dimensions it is only 1.4 units away from the origin.
- AlexandrB 2y ago> "if you've met one person with autism, you've met one person with autism" Isn't this true for just about any condition? It's not like people with ADHD or depression all behave exactly the same. I understand the urge to avoid categorizing people too broadly, but at the same time making the "taxonomy" of a condition hyperspecific is contradictory to having the label in the first place. If saying "I have autism" has no descriptive power because this could mean a million different things, it seems like the term needs to be retired or narrowed to a specific set of behaviors/challenges.
- crisply5706 2y agoKeep in mind that the current state of our knowledge of autism and other neurological conditions is still extremely new. Just 30 years ago, you would have been told that only young white boys exhibit autism. There is debate within the autism community about ditching the catch-all term "autism", but I don't expect it to go anywhere. Broad labels like that are useful. I can tell a random person that I'm autistic and they generally understand that my "abnormal" behavior is innocuous. It's less useful to give a stranger a 30 minute lecture on my individual needs and challenges. Read up on the controversy around asperger's and the "high/low functioning" dichotomy. These were standard measures for a long time and have only been dropped in the last ten years or so.
- ZeroGravitas 2y agoI've heard it used exactly that way for ADHD. But more widely, there's a bunch of conditions of varying severity that might be caused by being in a car crash. That doesn't make "I was in a car crash" a bad answer to "what happened to your leg/eye/speech", it's just a fact.
- hiciu 2y agoThat's exactly the issue, it is not as simple as "less" or "more" "autistic". I don't think I'll be able to explain it properly with my own words using english, sorry. I'll just quote nih.gov: > Autism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience. and wikipedia: > Autism is clinically regarded as a spectrum disorder, meaning that it can manifest very differently in each person. For example, some are nonspeaking, while others have proficient spoken language. Because of this, there is wide variation in the support needs of people across the autism spectrum. and maybe take a look at this list: https://en.wikipedia.org/wiki/Spectrum_disorder#Types_of_spectrum https://en.wikipedia.org/wiki/Spectrum_disorder#Types_of_spe...
- kthartic 2y agoI see, wikipedia's definition is quite informative here. Thanks
- astura 2y agoI mean... that's literally the definition of "spectrum" From a few random dictionaries: >2. used to classify something, or suggest that it can be classified, in terms of its position on a scale between two extreme or opposite points. >a range of different positions, opinions, etc. between two extreme points ?????
- burkaman 2y agoThat is what spectrum means, and some autistic people say the word is not applicable to the concept of autism.
- twobitshifter 2y agoYes, that’s true from the dictionary and the article is one place where its use makes sense. However, usually people say “on the spectrum“ to mean someone is a high functioning autistic. That is something that isn’t a helpful definition.
- quickslowdown 2y agoThis has always driven me nuts. We're ALL "on the spectrum," if you just stop and think for a moment before saying it. That's what a spectrum is.
- crisply5706 2y agohttps://getgoally.com/blog/autism-spectrum-wheel https://getgoally.com/blog/autism-spectrum-wheel The naïve assumption is the spectrum is a binary more/less autistic. It very much is not.
- plorg 2y agoIf you tried to quantify different people's experience of autism you could maybe compare people by the amplitude of their symptoms (say a maximum or average), but you'd get a much better idea of the range of experiences with something like a Fourier transform. Imagine different symptoms are different wavelengths of light. Different people experience certain elements of the constellation of symptoms that we can "autism" to different degrees. And the goal is not really to get anyone to be "less autistic", but to help them live in society (or to build a society that allows them to better join in).
- quickslowdown 2y agoYeah, I would read this and assume the 2 ends of the spectrum are "autistic and not-autistic," considering what the word "spectrum" means.
- ordu 2y ago"autistic and not-autistic" is not a spectrum, it can be described as a scalar value. A spectrum appears when you have many values (maybe continuum) with different values. Frequency spectrum is a good example: it shows you a lot of frequencies that intermixed in a signal.
- Anotheroneagain 2y agoPlease stop spreading such lies, if anything, they don't like being grouped together with obviously disabled people.
- imtringued 2y agoHave they actually sequenced their genes and compared them? If there is a genetic explanation, then any mutations or replication errors during pregnancy would end up screaming into your face once you do the comparison.
- ipnon 2y agoThey divided from the same oocyte, they have identical genomes.
- toasterlovin 2y agoNot strictly true. Mutations happen and when they happen early, they can affect a large percentage of the cells in the body.
- ProllyInfamous 2y agoI agree, as an identical twin (partially inversus situ) — some examples: opposite hand-dominance; our optical Rx was once exactly opposite; intro/extro -version; engineer/stoner; life outlook/perspective. We have taken completely different life pathways, and yet still enjoy each others' company. Knowing that I will precede as "Algernon" from "Flowers for..." makes me immensely sad for "Charlie" [Twin].
- drooby 2y agoThis seems to bolster the theory that autism is modulated by the gut-brain axis. Being given antibiotics at such an early age will probably severely dysregulation gut microbiota. And GABA actually does cross the BBB but in small amounts. Perhaps at such an early age, dysregulation in GABA produced in the gut has significant effects on brain health - over stimulation, learning memory issues, etc.
- sidewndr46 2y agoReading the article, it turns out the one twin who is "more autistic" had a hole in his heart that surgery had to correct. So I suspect the actual issue here is something simpler like a difference in brain development because of the difference in the amount of blood flow.
- eutropia 2y agoIsn’t it common to be given a lot of antibiotics when you get a surgery?
- Rinzler89 2y agoIt is.
- boringg 2y agoI think blood flow to the brain >> impacts of antibiotics is the likely order of magnitude of impact - though tough to tell.
- inglor_cz 2y agoA friend underwent operation of his aorta. Post-surgery inflammation is an absolutely common complication and they dumped a lot of antibiotics into him precisely to reduce the risk. (If I understand correctly, it wouldn't be probably fatal, but very, very unpleasant.)
- idontknowifican 2y ago
- iamleppert 2y agoThey are not identical. Both born with different physical problems. How do you call that identical?
- apothegm 2y agoTwins can be born with the same genes (because they originated as a single embryo that split), or with different genes (they originated as two separately fertilized embryos). The former are considered identical twins even if you can tell them apart. They’re genetically identical, which scientists find useful in teasing out nature vs. nurture hypotheses. They especially like to compare them against twins with different genes — who are called fraternal twins even if you can’t tell them apart.
- iamleppert 2y agoIsn’t it obvious they aren’t physically identical? They have the same genes but are not identical!
- astura 2y agoThis is where English terms we use is very imprecise and can be confusing. English calls twins that were once the same zygote "identical" no matter what they look like or what happened after the zygote split.
- SiempreViernes 2y agoThe term is being used in reference to their genes, not their appearance.
- INTPenis 2y agoI'll mirror what someone else said, have they actually sequenced them? Clearly a lot of changes happened at a very early state, mutations, so why should we expect their genetic makeup to be identical?
- mkoubaa 2y agoWasn't there a theory that autism was affected by ultrasounds during pregnancy?
- HeatrayEnjoyer 2y agoWouldn't everyone be autistic by now?
- mkoubaa 2y agoAffected by != Cause
- DaiPlusPlus 2y agoOn the Internet it increasingly feels like that… (…yeahyeah, selection bias, etc)
- nradov 2y agoThere was never such a theory. At one point a few researchers had a hypothesis that fetal ultrasounds might cause autism, however multiple studies have failed to turn up any causative relationship. https://doi.org/10.1111/ppe.12998 https://doi.org/10.1111/ppe.12998
- mkoubaa 2y agoThank you for the clarification!
- reilly3000 2y agoIt’s strongly correlated with genetics down to a handful of SNPs. There is also a lot of evidence to suggest physiological differences in amygdala mass as well as hormone production. No exterior factor has been proven. No scapegoat is needed either, autists tend to like who they are and have unique and important value.
- sentfromrevolut 2y ago[flagged]
- swayvil 2y agoThe autist focuses. Concentrates. Invests his entire attention in a particular sliver of the experiential buffet. That's autism. If it's a useful sliver then there you go.
- strogonoff 2y agoI have not seen a better description of what autism might be like at a higher (or lower, depending on whether one’s metaphysics align with materialism or not) level than “investing entire attention in a particular sliver of the experiential buffet”. Amazing at maths but can’t keep a conversation, holed up at home working out like a maniac all the time, musical genius but incapable in daily life[0]—everyone probably knows one or more of such people, especially earlier in life. Is that another side of the same coin? Is it only when this sliver’s intersection with the multi-dimensional space of social-cultural norms is insufficient that other people tend to get weirded out? [0] These are only some examples, I am sure there are many other ways it can manifest that are familiar to us but were not really thought of as a byproduct of autism. And, of course, some of these can be caused by other factors (e.g., the working out example could be a symptom of body dysmorphia).
- jawns 2y agoThat's one type of autism. The reason it's now called Autism Spectrum Disorder is because there are many very different manifestations, not all of which involve hyperfixation.
- sctb 2y agoIt's not hyperfixation exactly, but a requirement for an ASD diagnosis is some forms of "Restricted, repetitive patterns of behavior, interests, or activities" (from the DSM-V).
- peterkelly 2y agoThis is one of four criteria listed in section B, which only requires two to be present. See https://www.cdc.gov/ncbddd/autism/hcp-dsm.html https://www.cdc.gov/ncbddd/autism/hcp-dsm.html So it's still possible to receive a diagnosis if you don't have hyperfixation but have two or more of the other section B criteria.
- drooby 2y agoIt's so interesting to see the differences in their faces. I can tell from the folds and wrinkles on Sam's face that he engages in more neurotypical communication.
- twobitshifter 2y agoSam also now has thinner hair than John. Stress of college, different diet, something else?
- deleted 2y ago[deleted]
- h0l0cube 2y agoAutistic individuals often have differences in muscle tone and hypermobile joints
- fragmede 2y agothere's a link to Ehlers-Danlos syndrom (EDS) there as well enl
- GordonS 2y agoI don't know that we can generalise this though - some people mask their autism very well, sometimes without even knowing that's what they're doing.
- quickslowdown 2y agoI don't have much on the way of valuable insights or conversation starters, I just think this story is sweet and these 2 brothers obviously love the hell out of each other, made me happy to read :)
- vladgur 2y agoThanks for saying that. Reading your comment made me actually want to read the article in question and I am super glad I did. Emotionally, probably a best reminder of familial love in a world filled with indifference and often hate
- scottlamb 2y agoThis is driving me oddly nuts: > "I think there's an understanding that 'My twin isn't quite as capable of communicating in the way that they need to, so I'll help them with that,'" she says. > That description fits Sam and John. > When asked to name his favorite episode of Sesame Street, John blurts out a series of words: "Abby makes the seasons change." Sam understands immediately and quickly steps in to explain. > "There's an episode with Abby Cadabby, Rosita and Zoe, where they dance around with the seasons changing," Sam says. "I think that's the one he's referring to." I know that episode. It's actually called "Abby Makes Seasons Change", [1] so that "series of words" is the direct answer to the question. The point is probably true in general, but the example sucks. [1] https://www.sesamestreetguide.com/2020/02/sesame-street-episode-4191-video.html https://www.sesamestreetguide.com/2020/02/sesame-street-epis...
- 1231232131231 2y agoWow, great find. That's pretty unfair.
- teaearlgraycold 2y agoNice. Even without that being the episode name, it's one word away from being a more understandable answer - "When Abby makes the seasons change". Not exactly word salad.
- alpaca128 2y agoHow so? It's a perfectly valid and complete English sentence either way.
- ejstronge 2y ago> I know that episode. It's actually called "Abby Makes Season Change", [1] so that "series of words" is the direct answer to the question. The point is probably true in general, but the example sucks. Are the episode names of Sesame Street displayed in the episode?
- scottlamb 2y ago
- giantg2 2y agoHe spent a month in a hospital as a small child. Of course this impacted his autism. We know that social interaction, play therapy, etc can be effective at reducing the severity and impact of autism and this is the direct opposite. How do you think a small child is going to learn about social interaction if they're stuck in a hospital without as much interaction and with much of the interaction being to the point? They're likely bored and witnessing the dry, clinical interactions of many of the staff. Neither of which are helpful. Even staying a few days as a toddler is highly impactful on normal kids. They often don't understand why people are hurting them (IV, blood draws, ecg stickers, etc). They hate being stuck in the bed or their room for days with just toys and screens to play with - no running of course. In my experience it seems that fears and nightmares are common. The way the kid interacts can change for a short time after getting home (not as interested in the same type of play as before, happier with screen time, not as trusting of others, etc). Staying in a hospital is rough for someone who is fully developed and knows what's going, it's way more impactful for those who aren't.
- detourdog 2y agoThe number of words young minds hear during the early stages of development has a great impact on future language skills. The studies I'm aware of mostly focusing on developing reading skills. I find it plausible that spending one's first month in a hospital could have a long term communication development gap.
- p3rls 2y agoI once was hospitalized for depression and drug use when I was a teenager and my warcraft 3 stats never recovered after that. I always wondered if there were studies on that sorta thing.
- ycombinete 2y agoMy Counterstrike rank was always inversely correlated with my general happiness.
- nickpeterson 2y ago
- Anotheroneagain 2y agoOne possibility (strongly supported by cases like this one) is that "severe" autism is caused by severe neglect, when the child gets essentially abandoned once labelled as "autistic". Has anyone tried to expose John to anything else than his "favorite" show? Was he even exposed to enough language?
- djhope99 2y agoMy 8 yr old identical twin daughter’s have severe autism but one is definitely worse than the other, one of them can use some words but the other is completely unable to communicate. I have absolutely no explanation for this, I cannot think of anything different that happened to them. They didn’t have antibiotics or surgery at a young age like in this story either.
- mikebrave 2y agoIt was my understanding that Autism was more or less that the neurons in the brain expanded further than they could support and the parts that weren't supported atrophied, kinda like a tree that overgrew, think what happens to a fruit tree that isn't pruned. Everyone's brain does some growth and pruning as needed, but something happens with autism that more or less it goes too far and then the parts that atrophy are less controlled than an average brain. This is why savants etc. This process could express completely different in people that were more or less the same genetically, just one day in a womb where they got different amounts of nutrition could cause differences to manifest, then a lifetime of small differences would further manifest differently.
- burnte 2y agoThere's genetics, but then there's gene expression which is affected by the world, so they clearly grew differently.
- djhope99 2y agoThank you this is helpful. The genetic part makes sense to me, my wife has PCOS and they have a history of ovarian problems in their family. There are studies linking PCOS and autism and to high levels of testosterone. The mystery to me was why they are so different.
- burnte 2y agoYep, for decades thought genes were everything, then we started to realize epigenetics and proteomics are even more important. DNA is the code, and as we all know code can run differently in different environments.
- ChiperSoft 2y agoThis article annoys me to all ends. It started out badly by referring to autism as a disability, but it got worse in the fact that they’re assuming all of John’s symptoms are because he’s autistic. All of his disabilities can much easier be ascribed to brain damage post-partum. That hole in his heart meant he was getting less blood flow and less oxygen at a critical time in his brain development. The fact that both twins are autistic has nothing to do with it!
- tsss 2y agoIt is a disability and it is disabling to most people who have it.
- genericresponse 2y agoDefinitionally, at least in the US, Autism is a disability. It's a qualifier for the Americans with Disabilities Act. The specific definition: "A disability is a physical or mental impairment that makes it harder for a person to perform certain activities or interact with the world around them." For many ASD makes it harder to interact with the world around them, whether that's overstimulation, communication challenges, or something else. It's reasonable to wonder if the disabilities were caused by brain damage post-partum or are symptomatic of his autism. At the same time we shouldn't forget the many others with ASD and similar disabilities who lack another explanation. Some of the population with ASD have limited communication skills and cannot pass as neurotypical.
- staticman2 2y agoYou appear to have invented your own definition of disability and put it in quotes. A google search for your quoted definition only turns up this very web page. Odd.
- rpmisms 2y agoThat's an over-broad definition. I really hate ASD as a monolith, because there's a harsh difference between brain damage and brain misconfiguration.
- 2y ago
- tomasGiden 2y agoOne of my sons had a heart defect needing open heart surgery when he was 5 days old (it went fine!). In connection to that he was enrolled in a scientific study. Apparently when you are in a heart and lung machine as an infant (<1 month old) the pressure in the machine is so great compare to the normal pressure that the blood cells break creating free radicals. These free radicals can in turn create damage in the brain which can later on cause problems with executive functions and complex reasoning. Autistic people also have problems with executive functions (my other son has Asperger’s). Now I’m not saying that free radicals cause autism but maybe they modulate it when the same parts of the brain are affected by them during infancy.