Identical twins both grew up with autism, but took different paths
npr.org
npr.org
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
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.
The mystery to me was why they are so different.
I recommend you not focus overmuch on why your kids are autistic. (The most likely reason is that one or both of the biological parents are autistic.) Disabilities are contextual, and autism can be a significant disability if you want to "live a normal life", so the best approach is not to impose arbitrary constraints and unrealistic expectations on them. (And really, who wants to keep up with the Joneses, anyway? https://xkcd.com/308/)
If you're interested in the topic generally, by all means learn about it, but none of this will help your daughters. There's no way to "cure" autism, because there's nothing to cure: it's just a way to describe a way that some people are. (Though some associated conditions, such as difficulty focusing can be treated with medication (I'd recommend not putting kids on ADHD drugs, because it's hard to distinguish between a genuine problem with cognition and mere excitable boredom from the outside.), others (e.g. hypermobility, coordination issues) can be mitigated with physiotherapy, and yet others (e.g. social anxiety, miscalibrated hunger / thirst detectors) can be alleviated with explanation, strategies, and practice.)
A good part of the differences in "severity" of their "autism symptoms" will be the extent to which they grok the things in question. For example, if you're not interested in verbal communication, you're not going to study it intensely to pick up on how other people instinctively behave, so you won't learn to imitate it. No amount of wanting what verbal communication can get you will give you the intrinsic motivation you need for (years of) extended, generalisable study – at least, not unless you happen to be good at long-chain motivation. If, however, there's a fun game you like, and playing that game involves developing proficiency in the (inherently boring) skill… well, there's a reason so many kids learn English by playing competitive video games.
It’s not so much that we want them to be normal or are particularly worried about that, we are very anxious though about what happens to them when we die and what abuse they might face.
They're not going to be dependent on you their whole lives. They will be dependent on society, but so are the majority of neurotypical adults. If they're capable of interacting with the outside world, having deliberate hobbies, etc, then while they may need extra/different support with many aspects of life, there will be areas where they don't need the support that society offers ordinarily. (I cannot tell you what areas those will be, but I'm confident there will be some.) Autistic children become autistic adults but, as with anyone, they need opportunities to mature and learn life skills if they are to become competent autistic adults.
Don't assume that there's anything your daughters are incapable of. "Doesn't talk" doesn't mean "can't speak", which doesn't mean "can't understand speech", which doesn't mean "can't use language", which doesn't mean "can't communicate deliberately", which doesn't mean "can't understand communication". You might have preconceptions like "she won't be able to read until at least her first word, so there's no point teaching her": with autism, you have to throw that kind of reasoning out of the window, because there will be at least one thing that an autistic person is "unexpectedly" good at, and if they never get the opportunity to try, you'll never find that out.
If you want them both to have a chance at an independent adulthood, you need to start them on the relevant skills early. Don't save everything until they're 15, because that's a lot to cram into a short space of time. Autistic people don't understand things the same way allistic people do, and not everyone's learned the (culturally-specific) "translating from the allistic explanation attempts" skill, so explanation likely needs supplementation with lots of practical experience.
Example: when going shopping, start at the beginning of the process (going through the pantry / meal plan, identifying which things are needed, compiling a shopping list). Talk through what you're doing, and what your reasoning is. Try to make it a routine, where the same sorts of things happen each time, and decision points are exposited (e.g. "this time, we're driving"): routines are easier to understand, easier to predict, and more familiar, which can be comforting. Though, be aware that autistic people often have atypical sensory processing (https://www.autism.org.uk/advice-and-guidance/topics/sensory...), which might prove too distracting to concentrate on learning: you might have to go shopping during the quiet hours, if the supermarket is ordinarily too intense; or, conversely, a dim supermarket might not be engaging enough. (You'll know your daughters better than I do, but I'm partly writing this for the benefit of others.)
When stuff gets spilt, don't just clean it up: show them how to clean it (including where to get cleaning supplies). When getting breakfast, show them how to do it a few times a week, if they're not already doing it themselves. (Perhaps let them practice pouring measured amounts of washably-dyed water between various containers – plastic milk bottles, especially, are unintuitive near the top and the bottom.) Eight is getting a bit old for such things to be "socially acceptable", but fortunately, autistic people tend to care less about such things (modulo social anxiety), so if you don't say "practising these basic skills is for younger children and other people will judge you for it", that probably won't be an issue.
Abuse is always a concern, but most women have to deal with that sort of thing: these aren't unusual worries for a parent of two daughters to have! Society will be better when they're older. Just try to keep them out of environments where one small group of people is judge, jury and executioner, such as prison-like "assisted living" facilities, or the "care" of ABA practitioners (see: https://starvingautist.com/aba-good-intentions-are-not-good-...). (A good assisted living facility might be really helpful, though: it all depends on what each daughter's needs are when they're adults / no longer your dependents, which is hard to predict from how they are aged 8.)
You might find these stories about an autistic(?) man with limited speech, working in a Swiss police station, interesting. https://notalwaysright.com/no-accident-kboom-explode-on-his-... https://notalwaysright.com/no-neglected-post-on-his-watch/30... https://notalwaysright.com/no-lapses-in-security-on-his-watc... They're written for an allistic audience, but the depiction feels faithful: given the situations depicted, I imagine I'd make the same decisions as Peter did (if I had enough self-confidence to work that job in the first place).
They're also good depictions of autistic morality. Academic descriptions like https://www.spectrumnews.org/news/mind-blindness-affects-mor..., while faithful descriptions, tend to interpret this as "mind blindness", but really it's just having higher standards, closer to what Eliezer Yudkowsky would call "heroic responsibility". (https://aarongertler.net/heroism/ is probably a better description than anything Eliezer Yudkowsky's written.) This article writes:
> The man traveling in Africa who encourages a friend to swim in a pond after seeing other tourists frolicking there is to blame for that friend being bitten by a mosquito and contracting malaria, [autistic research subjects] say, just as the girl who builds an igloo out of snowballs is to blame when icy snowballs crash on her friend’s head.
This makes intuitive sense. Somebody who does not understand that mosquitos are common around stagnant or slow-flowing water such as ponds, and that malaria is endemic to many parts of Africa and can be contracted by mosquito bites, has failed to perform the most basic research, and it's negligent to provide uninformed advice about things to do. (Basing your recommendation off the activities of other tourists displays a severe deficit of theory of mind, but such groupthink is common among the allistic population.) Likewise, if building a structure out of heavy materials, you need to take into account the material properties of such a structure: practising engineering without a license is illegal in many countries, for exactly this reason (not that this heuristic is perfect: https://www.vice.com/en/article/n7jq98/man-fined-for-enginee...).
For some reason I can't explain, the authors chose to bookend this paragraph with:
> But the moral conundrums in the second set of experiments flummoxed them. […] In case after case, they assign blame to individuals who intended no harm, failing to distinguish between intent and outcome.
but any philosopher of ethics will tell you that this is an incredibly defensible position, and many will tell you that the standard allistic position makes less sense. Academia – and society in general – labels as a deficit what is actually just a failure to understand allistic nonsense that nobody ever bothered to teach.
It might be worth learning a sign language (ideally one used in your local culture), and/or investing in an AAC system (see https://www.rachelmadel.com/blog/stimming-and-aac for a common misconception).
We have a four year old (almost five), who we think exhibits many of the traits associated with autism and/or ADHD. Since day 0 of his life, he has been "difficult". He could not breast feed. He screamed more than other babies. Loud sounds, any cold sensations, etc all bothered him extremely. We couldn't really live a normal life because he cried so much, all the time, everywhere. He still can't walk on cold floors barefoot. He is extremely emotional and volatile. The slightest thing that doesn't go according to plan will result in a hyper-ventillating breakdown. He is angry all the time. He has an obsessive need for answers and will not accept "we don't know". He has poor gross and micro motor skills. He can't ride a bike and we struggle to help him learn because if he does not get something immediately, then the extreme anger and breakdown occurs. His writing is poor.
However, on the other side, he can be exceptionally caring. He loves his close and extended family. He loves sitting on laps, chatting away. He can communicate well, no issues talking. In fact, he never shuts up and will always be wanting to communicate about something. This actually causes problems because he cannot help interrupting and cannot wait. He sleeps very well, far more easily than average.
So it is difficult for us. We're trying to get him seen and potentially diagnosed, so that we can hopefully learn strategies to help him live a happier life. But because he isn't "typically and obviously autistic" we're not getting a lot of traction to even get him seen.
(This is just a rough summary, there are more behaviours we're concerned about)
Updated: We have been fobbed off a few times already, so we're pursuing avenues with letters from his school and so forth. We are the parents and we know that he is not a typical four year old. We've known something was atypical since his first year. But he doesn't fit the stereotypical definition of what many people associate autism with, so we're worried he is going to fall through the cracks in the system.
When I was around 6, I resolved not to become one of those rubbish adults who doesn't know anything but thinks they do: since then, I've been paying attention. Apparently, most people don't know how to do that. (Having direct experience to pay attention to probably helps as well.)
I used to use myself as a baseline for my observations, rather than the less-variable "reference adult" I now use, so my understanding of children younger than 7 is not as good as I'd like.
> so that we can hopefully learn strategies to help him live a happier life.
There's no need to wait for a diagnosis for this: this stuff is well-documented online, and none of it is that hard, even if some allistics find it unintuitive. Don't get too attached to the idea that your kid is autistic, though: use what helps and discard what doesn't, because you never know. (Do not subject your kid to ABA, and never do anything that funnels money to fake, anti-charities like Autism Speaks,[8–10] but apart from that, go wild.)
I've provided some suggestions, in case you find that useful.
> Loud sounds, any cold sensations, etc all bothered him extremely. […] He still can't walk on cold floors barefoot.
Don't try to force him into uncomfortable sensory environments. Sensory issues can manifest as mere unpleasantness, or as actual pain, so either it'd just be torturing him, or it'd train the instinct to avoid unpleasant stimuli out of him: neither of these are good outcomes. (The latter can be really hard to deal with, later in life: for example, on out-of-routine days, I still have issues connecting "my hunger pains are starting to interfere with fluid movement" and "maybe I should have breakfast then, since it is 8pm".)
If he's getting better at dealing with barriers that prevent him from doing things he wants to do (e.g. deciding to tolerate the screaming of other children in order to play on the bouncy castle, stopping once the trade-off is no longer worth it), great! Keep doing whatever's helping him develop that skill. But if he's getting better at "dealing with" uncomfortable environments by internalising that his comfort is less important than other people's convenience, that's not so great – and it's something that loving parents can easily encourage by accident. I'm not sure how to distinguish between the two, but talking might help; and, as a parent, you can make sure you're not putting him in bad situations when you can help it. (I'd love to say "never", but parenting in an imperfect world involves trade-offs like "we have to wait quietly within the hospital" or "the school run goes past that shop with a Mosquito alarm that the owner won't turn off".)
If he gets as much practice with language as your description suggests, it might be good to start talking these issues through. Ask what sorts of things upset him, and what to do about them. The focus should be on learning how to describe and talk about issues, and finding accommodations that might mitigate the issues.
In-the-moment, you can ask what's wrong, find a possible mitigation (e.g. stepping outside for a bit), and ask if he wants to do that. In-the-moment, he might be too overwhelmed for that: see [0].
> He is extremely emotional and volatile. […] He is angry all the time. […] if he does not get something immediately, then the extreme anger and breakdown occurs.
Are you sure it's anger, and not a meltdown due to overwhelm? See [0]. Assuming it is anger:
There are some simplistic things you can do to deal with anger,[1] but this advice is a muddled combination of various factors. I mean, that advice works, I'm not knocking it, and it's as good a place to start as any, but you'll want to progress towards him noticing when he's getting angry, understanding why, and channelling the emotion in more fruitful directions.
Many autistic people struggle with understanding emotions, both others' and their own,[2] so talking through some algorithms to identify and respond to various internal mental states might be useful. For anger, talking about the reasons for the anger, then possible ways to resolve those situations (if actionable) or do something to calm down (if unactionable) or both (if actionable, but too upset to take the action just now), and setting simple rules like "we don't hit people / make loud noises when we're angry" ("loud noises" because shouting in anger is intimidating and can scare people: don't give any arbitrary orders about what is/isn't acceptable self-expression) can help. For frustration (i.e., when you want something to happen and it's not happening), asking about what's frustrating, commiserating, and suggesting a less frustrating thing to focus on instead, can help.
For the bike example… well, it depends on the kid, but I'd try explaining that riding a bike can take years to learn, because it's doing a lot of different things at once (balancing, pedalling, steering, going fast, looking out for obstacles), and suggesting to practice one of those individually (e.g. practising balance by trying to keep both feet off the ground for a few seconds while kicking forwards without the pedals – going as fast as possible helps), and that there are lots of ways to play with a bike, and he'll learn to ride it eventually. (He will learn to ride a bike, if he keeps at it, regardless of how bad his coordination issues. Perhaps not well enough to ride alongside road traffic, but if you can learn to walk, you can learn to cycle.)
Since he can write, he presumably reads. Perhaps he could read some books about this: Focusing by Eugene Gendlin[3] is a good one, though perhaps not that good for a 4-year-old. (You can stop worrying about this kind of age-appropriateness by age 10, though make sure at least one of his books is a big dictionary.) It's important to provide a wide variety of techniques and paradigms: no psychological models are correct, but some are useful.
Other people have provided some age-appropriate advice[4], and while it looks broadly like the right thing, I have some caveats to add. Keep in mind that many autistic people's emotion doesn't quite match your average allistic's emotion, and body language is usually quite different, too[5]. I'd be wary of telling an autistic kid what they are feeling. For unrelated reasons, saying things like "you're laughing, so you must be happy" that are not literally true is a bad idea, and might interfere with tickle consent[6]: "you're laughing, so I think you're happy" is much better wording.)
They're slight to you, because you have a more developed world-model. They're not slight to him, because they are the foundations of his reality. Talking about different things that can happen, different ways things can be, and their consequences, ahead of time – and then reinforcing that shortly before the change happens (W, so we're going to do X, so Y and Z will happen) – can make it easier to deal with. I'm not sure how much that'll go in, because he's only 4, but this can work with older children.
If these are his own plans going wrong and causing him distress, maybe it's worth teaching him how to plan for contingencies. That includes considering all likely possibilities (i.e., if A then X; if B then Y; if C then Z), and "I plan to make a new plan" for less likely events.
Techniques for managing anxiety might help as well. The general idea is to give him lots of tools with which to process the things he can't currently process. (One model is that autism is a lack of hard-wired, instinctive brain functions that allistic people have. This model is wrong, but sometimes useful.)
> He has poor gross and micro motor skills.
Sounds like dyspraxia, which usually means you have to break actions down into simpler actions and practice those simple actions a lot: sort of like learning a musical instrument. but for everything. Playing with blocks, arts and crafts, and lots of playing outside (somewhere where falling over is safe) can help reduce day-to-day clumsiness, but that will probably always be a difficulty. (I don't know much about dyspraxia.)
> He has an obsessive need for answers and will not accept "we don't know".
Are you sure he's not just playing a call-and-response game? (Does he get upset when you respond "we don't know", or is he just insistently asking questions?)
But yeah… gonna have to side with him on this one. You, as his parents, are his main gateway to the wider world, which is full of lots of really really really interesting things. "We don't know" just shuts down any possible line of inquiry. It's not actionable, even in theory. But knowledge doesn't come from parents: it comes from books, and experience, and science, and study, and we can (almost) always find out things that we don't know yet.
That doesn't necessarily mean you have time to find out the answers to his questions, right when he's asking them.[7] If you can explain that it takes time to find things out, you could make him a list for things he wants to know, and every time he asks something you don't know, you can get him to add it to the list, and then you can go through the list in your own time.
Make sure he can see the list, and add to it himself. If a lot of questions are about a certain topic, you could go to the library and find a relevant book.
If you describe some of the actual questions, I can suggest a more specific approach should you want it. (Some questions, like "how does gravity work", are best resolved by explaining how to do a physics experiment, or perhaps by telling the story of the Delft tower experiment, rather than by trying to explain Newton's laws and the inverse square law.)
Thinking of writing makes me think of school: has he started that yet? If he's going to go to school soon, and he has trouble with change, it might be worth making sure he's got a firm grasp on everything involved ahead of time, possibly including a visit to the school he's going to, so he knows what to expect. (You may be able to take advantage of moving up day.) But, again, he's 4: he might not remember a visit by the time school actually starts.
> This actually causes problems because he cannot help interrupting and cannot wait.
That just sounds like a 4-year-old to me: they're not known for their impulse control. Don't think it's autism-specific. Patiently explaining that it's rude to interrupt, and he should (e.g.) put up his hand and wait if he wants to say something while other people are talking, should get through after the thousandth time or so. (Make sure the thing to do is consistent: putting your hand up makes sense if it's the same as you do in local schools, since there'll be less re-learning and context-switching.)
> there are more behaviours we're concerned about
I can't promise I've seen it before, but your kid sounds fairly typical, so I might be able to give suggestions for those as well, if you like. Do check the websites I've linked first, though: relying on one source is a terrible idea, no matter how much I may think I know everything.
[0]: https://www.autism.org.uk/advice-and-guidance/topics/behavio...
[1]: https://www.autism.org.uk/advice-and-guidance/topics/behavio...
[2]: https://embrace-autism.com/alexithymia-and-autism-guide/
[3]: https://archive.org/details/focusing00gend
[4]: https://www.autismhelpuk.org.uk/post/how-do-you-teach-an-aut...
[5]: https://embrace-autism.com/autistic-verbal-and-nonverbal-com...
[6]: https://autisticnotweird.com/the-stop-rule/
[7]: https://www.smbc-comics.com/comic/why-is-the-sky-blue
[8]: https://mediabiasfactcheck.com/autism-speaks/
[9]: https://www.themarysue.com/the-autism-speaks-controversy-exp...
I'm not sure I understand. Are you autistic yourself?
In any case, thank you for your lengthy and informative replies. We live in the UK, so our path will be different from the US. As the parents, our strong instinct is that he is not "just a typical four year old". We have known something was atypical since his first year. I am so tired of external people telling me how he is "just being a child". We have another child. We know what "just being a child" is. And I'm tired of being told to dismiss our instincts.
We know that a diagnosis won't solve anything, and that we can and are learning as much as we can to understand the way he perceives the world and what works for him and what doesn't.
Thanks again for your replies.
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.
The fact that both twins are autistic has nothing to do with it!
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.
No it doesn't. They get frustrated by the other's inability to do so. They need to live in a society, and instead are surrounded by individuals who hardly interact, and hardly any culture, as everything has degraded to what the brain damaged majority can deal with. The music has simplified to a simple beat, the movies have simplified to beasts screaming half sentences at each other, and beating each other up, or, whatever.
I think this may be specific to Heart surgery.
Now, French doctors were always very quick to prescribe antibiotics (as a kid I had plenty of them) and it took quite a lot of effort to change their(and parent's) mind. My children got much less, though they were almost never checked for virus vs bacterial infection.
FTA: “The infection was from drug-resistant staph bacteria. So John went back to the hospital and spent a month on powerful antibiotics pumped directly into a vein near his heart.”
> "The earliest twin studies really helped to debunk this theory that autism was caused by parenting," Morris says. Under this theory, moms took the brunt of the blame, supposedly for being "cold and distant and detached from their child."
...might not be entirely wrong. They've since shown genetics is a factor, and I'll ignore the institutionalized misogyny part, but being in a hospital for a month probably did mean having much less parent/care-giver interaction/touch during a critical period, and who knows how much of an effect that could have.
Before the heredity nature of autism was accepted, this was the school of thought (“refrigerator mothers”). But in truth, it’s neurodivergent parents having neurodivergent children, and society punishing the parents (namely mothers) for their inability at providing the “expected” nurturing conditions.
Something like whatever mechanisms decode structure from the genome are faulty and produce slightly wrong structures throughout the brain and body.
Anecdotally, I see a higher rate of general illness and physical birth defects in autistic people.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7711487/
It makes a certain amount of sense that a collagen / connective tissue disorder is going to have wide-ranging effects, including the nervous system
In this setting, it's not unreasonable that any genetic syndrome would be more associated with autism; indeed, it's more interesting to find lesions that have a lower proportion of autistic carriers compared to the general population.
There's too many correlations that aren't common enough, I really think we've got the causality backwards. But then again I don't know anything
https://www.nature.com/articles/mp2010136
> Most ASD/MD cases (79%) were not associated with genetic abnormalities, raising the possibility of secondary mitochondrial dysfunction. Treatment studies for ASD/MD were limited, although improvements were noted in some studies with carnitine, co-enzyme Q10 and B-vitamins. Many studies suffered from limitations, including small sample sizes, referral or publication biases, and variability in protocols for selecting children for MD workup, collecting mitochondrial biomarkers and defining MD. Overall, this evidence supports the notion that mitochondrial dysfunction is associated with ASD. Additional studies are needed to further define the role of mitochondrial dysfunction in ASD.
(I hope noone is taking this seriously..)
Also nose biome interacts with the finger and fingernail biome quite often.
It’s extremely common for young kids to receive antibiotics. In some countries, antibiotics are over the counter and many parents will give their kids antibiotics for nearly any infection. Antibiotic misuse is rampant in some countries where they aren’t gated behind prescriptions.
Any such link with autism would therefore be an extremely rare side effect. The rate of antibiotic use in children is far higher than the rate of autism.
I don’t think this case supports the antibiotic theory by itself at all. I think it’s confirmation bias because antibiotics are one of the current trending theories among mainstream discussion.
This is not «extremely common».
Given that antibiotics are common but extreme infections and extended hospitalizations are not, why would anyone focus on the antibiotics as the root cause?
Not all antibiotics are created equal nor do they affect gut bacteria the same. There isn’t a singular scale for antibiotic power. Often, antibiotics are given via vein because they aren’t absorbed from the gastrointestinal tract, for example. This doesn’t tell us anything about the magnitude of impact on gut bacteria relative to an antibiotic that actually starts its journey in your gut.
This is a complicated case. Reducing the entire complicated episode to “it was the antibiotics” is extremely reductionist.
https://en.wikipedia.org/wiki/Christian_Science#Healing_prac...
Christian Science is very much a dying religion, and is not "prominent" anywhere so I'm not surprised that you never heard of them if you're young. The mother church is in Boston though.
"The infection was from drug-resistant staph bacteria. So John went back to the hospital and spent a month on powerful antibiotics pumped directly into a vein near his heart."
There are so many confounding factors here. Could be no connection to the episode whatever. Could be that the infection that required the antibiotics contributed to the autism. Could be the antibiotics contributed directly. Could be the overall trauma of the surgery, treatment and recovery.
Seems like the gut thing is the least likely culprit and requires quite a lot of creativity to even consider it.
I can tell from the folds and wrinkles on Sam's face that he engages in more neurotypical communication.
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].
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.
Especially with MMR based systems. No matter how good you get your win/loss ratio will end up around 50%.
So you have to ask yourself why you need to keep getting better. To me It’s really about finding a level of “good” that you can maintain comfortably, while maintaining interest.
And also realise that games aren’t vocations. It’s fine to play a game until you stop having fun, then stop playing the game.
AI literally made game hacks undetectable. It's never been easier to cheat on videogames in a way that poses literally zero risk of getting banned.
Here's an example of a tool that has made my "The Finals" experience about 10000% better: https://github.com/Babyhamsta/Aimmy
I'm having fun with my buddies, leasiurly talking on discord while yet another diamond sweat-lord who tries to gank me gets destroyed.
Also related, but botting on games like runescape has made my desire to play MMORPG's go way up too. Now I too can play the fun end game content without wasting my damn life on it.
> "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-epis...
Are the episode names of Sesame Street displayed in the episode?
It's unintentionally a really great example of failure to communicate caused by assumptions one makes about the person one's talking to.
I don't think there were necessarily saying that John just said a load of nonsense that didn't answer the question, just that it needed a bit of deciphering; that Sam helped explain what he meant to a non-fan.
> It's definitely autistic to name drop the title to an audience of adults who likely don't remember
If someone asks me to name an episode I'll assume they know the show, and that the name is sufficient. Because they asked for only that. Why can questions have an implicit "and tell me about it", but the answers cannot have an implicit "I assume you know which one it is"?
If you want to know something, ask it. Not everyone wants (or is able) to bother with deciphering what you think internally.
The person in the article has many issues. But I don't consider giving straight answer to a straight question being one of them.
People expecting others to conform to their way of communication without making an effort to meet others halfway are the main issue.
Edit: why disagree? Not recognizing that someone wants more information, or that your communication doesn't carry enough context for a person to know what you're talking about is classic autism. If you're someone without autism and just care about the subject, you're more likely to recognize the social cues and add more context.
It's not like neurotypical people don't also experience this frustration with having to divine what people actually desire in any given quantum of communication. I would even offer that people speaking with those on the spectrum might be primed to be less generous and forgiving with that anticipatory instinct; they jump to, "This person is weird," instead of considering the ways in which their own communication style is wanting. The reason they can get away with it, and autistic people can't, is simply a matter of how many people like them are around to validate their subjective experience. See your given CS department/TTRPG club for the flipside of this dynamic.
EDIT: Might also explain the phenomenon of smug, "What you ACTUALLY wanted was-" responsed on SO. We've trained people with precise thought to assume that anyone coming to them with questions doesn't actually know what they're trying to accomplish. We've created monsters.
Neurotypical communication 101 is that a casual conversation question about your favourite things is probably a cue for you to be enthusiastic and effusive about things you care about rather than a prompt for you provide names only, especially if the interlocutor is unlikely be evaluating your preferences using their own expert knowledge of the field. Sure, if nobody else steps in to provide further context any [neurotypical] interlocutor ought to be able to continue/rescue the conversation by asking followup questions about what happened in an episode and what is it about that episode that you like, but staccato answers offering a bare minimum of information is a communication preference (occasionally appropriate, more often not) rather than something inherently demanded by the question.
(I'd agree that people probably judge responses slightly differently if they already know the person on the other side of the conversation is autistic, but in a situation like this it can work in their favour, since if I assume the person providing only names, titles and one word answers to my open and friendly questions is neurotypical, I'm going to assume they're subtly signalling that they dislike me...)
Which is probably worse.
As the other reply mentioned, there is an empathy (double empathy) problem, but the answer is not for one party to have to assume responsibility for the other's comfort entirely by having to guess all of their unspoken emotional desires for the conversation. "The query explicitly didn't include [...]" is kind of a ridiculous thing to expect someone to respect or even predict.
Also, I don't mean to pick apart your comment, but:
>Neurotypical communication 101 is that a casual conversation question about your favourite things is probably a cue for you to be enthusiastic and effusive about things you care about rather than a prompt for you provide names only
I don't know that this is true. If anything, doing this seems to get on their nerves.
No, it changes it from "if you would be interested in hearing anything other than the briefest and least informative answer, it's your responsibility to explicitly state how much information you expect and in what form" to "of the vast set of theoretically possible answers, those which take into account what will be meaningful to the other person are generally better, although it's entirely understandable and expected that autistic people might not be able to do this".
And the article here wasn't insisting autistic people should make conversations flow or that neurotypical people shouldn't ever modify their expectations or followup questions, it made the simple observation that the high-functioning autistic twin has actually learned to do this, pattern matching well enough to provide additional context on behalf of his brother (who apparently regularly struggles to form sentences, presumably even when the question explicitly demands it). I think the conclusion that this is because one of the autistic identical twins has developed better communication skills than his brother (who quite possibly has other learning difficulties) is correct, and it definitely isn't an example of his brother being trapped in a world where all human communication except children's TV is just too imprecise for him.
> I don't know that this is true. If anything, doing this seems to get on their nerves.
There is a happy medium between staccato answers and relating the entire plot of the episode or insisting that all other shows pale in comparison with it, and a difference between bringing up $nichepursuit because someone asked and bringing it up because they were talking about something else. And yes, this happy medium is going to be more difficult for people on the autistic spectrum to recognise. But even excessive enthusiasm about something most people find extremely boring is more endearing than repeated one or three word responses that technically answer the question.
There is something called "double empathy problem", referring to the idea that there is a mutual difficulty communicating across neurotypes. Neurotypical people struggle to understand autistic people because of a sort of "language barrier" even without a deficit in neurodivergent communication skills per se.
After all, if neurotypical people are universally great communicators, they would be better at communicating with autistic people than autistic people are, but that's not how it works at all.
Thank you for the link and explanation.
This has been getting better over the past decade: I think increased access to science is making it easier for the subjects to learn about the "research" and say "hang on, this is nonsense". On the flipside, though, bigots have increasingly been picking the worst theories from the literature and using them as an excuse to do bigoted stuff. (e.g. you still see lots of people claiming that autistic people "have no theory of mind", because they don't understand that ethics are suspended when nobody's looking)
The expectation isn’t disordered, it's carrying with it implied social expectations (technically it would need to go against these to be disordered). The problem is that neurodivergent people tend to not pick up on the implied expectations and neurological people don't tend to notice that they need to be more explicit with thier expectations.
"What they actually should have asked was, "What happened during your favorite episode?", which might have produced the response given by the sibling."
Why is that what they should have asked? The initial exchange is technically correct. The asker should have said they didn't know that one and asked a follow-up question of what happened in it. Asking what happened in their favorite episode as the first question isn't necessary and isn't the general social flow of conversation.
I do agree on the second paragraph.
Even if talking to another fan, a 'less autistic' dialogue might be like:
B: Oh, me too, do you have a favourite episode?
A: Abby Makes the Seasons Change, hands down, do you remember that one?
B: Hmm, I'm not sure..
A: Oh, it's the one where [...]
One of my colleagues recommended that our department invite somebody from outside to explain to us about "neurotypical" people so we can better accommodate their special needs at work. We don't seem to have many "neurotypical" people so hence the idea to get an outsider to do a talk.
Maybe one of the things it would be good to understand is, are there actually lots of these "neurotypical" people or are they just bad at counting ?
But the autistic version seems perfectly valid, and shouldn't a reporter recognize a direct answer to his question and ask a follow-up if needed? I get the feeling instead he just stared blankly until someone else translated for him...why blame the autistic person for the reporter's poor communication?
this specific sort of difficulty communicating is a daily reality for many autistic folks
I believe that communication can often be fixed by either party, but is usually fixed by neither
The other person also failed in communication by not informing that the title of the episode mentioned was exactly that, while providing the necessary context.
If it's a useful sliver then there you go.
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).
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.
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.
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"
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
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.
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.
How so? Your followup makes no sense.
> 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.
You're comparing vectors of different magnitudes. You could equally object that (200, 0) is much farther away from the origin than (2, 0) is. That's true, but so what? You're still in a two-dimensional space.
Are you under the impression that the "magnitude" of a vector and its "distance from the origin" are separate concepts? They aren't.
If you're going to defend the idea that something I said was incorrect, maybe you should have some idea of what it was?
> Vectors with larger magnitudes have larger magnitudes than vectors with smaller magnitudes do?
Vectors with more dimensions have larger magnitudes than vectors with fewer components, for the same average magnitude of the components. The distance between the origin and (1,1) is less than the distance between the origin and (1,1,1) even though the components in both cases all have magnitude 1.
The next step is them doing a black knight and pretending they didn't put in the requirement by hand.
> Your last comment is completely incorrect, [random gibberish]
Here's what you were referring to:
>> 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.
All of those statements are, obviously, true. What did you think was incorrect?
Is this related to something that's been said so far?
>> [sidethread] The next step is them doing a black knight and pretending they didn't put in the requirement by hand.
Obviously, I didn't. It was already there before I made my first comment. Look up:
>>> Two complex numbers can have the same magnitude & be very far apart.
The only thing we've ever been discussing is what can happen between vectors of the same magnitude. But if you want to discuss what can happen between vectors of different magnitudes... everything I said is still true! It's easy to construct low-dimensional vectors with high magnitudes, and in fact the construction that I already gave, of interpreting large vectors within a space defined partially by themselves, will do the job.
Are you considering what all of this is supposed to be an analogy for?
Suppose autism has different components, something like this:
https://getgoally.com/blog/autism-spectrum-wheel/
You rate someone on each factor using the same scale, e.g. a real number from 0 to 1, or a scale of 1 to 10. The scale is arbitrary but consistent.
Then someone whose "average" rating is 0.5 on a scale of 0 to 1 can be farther away from someone else whose "average" rating is 0.5 when there are more factors. On a linear scale two people both at 0.5 have distance zero. On a two dimensional scale, you could have one at (0, 1) and one at (1, 0) and then each of their averages is still 0.5 but their distance is ~1.4.
That's what we're talking about.
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.
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.
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.
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_spe...
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
?????
The naïve assumption is the spectrum is a binary more/less autistic. It very much is not.
In animals and human chimeras, this means an individual derived from two or more zygotes, which can include possessing blood cells of different blood types, and subtle variations in form (phenotype).
https://en.wikipedia.org/wiki/Chimera_(genetics)
For example, in 2002, news outlets reported the story of a woman named Karen Keegan, who needed a kidney transplant and underwent genetic testing along with her family, to see if a family member could donate one to her. But the tests suggested that genetically, Keegan could not be the mother of her sons. The mystery was solved when doctors discovered that Keegan was a chimera—she had a different set of DNA in her blood cells compared to the other tissues in her body.
https://www.scientificamerican.com/article/3-human-chimeras-...
It does not mean "twins who are literally identical"; though you could think of it as twins who are genetically indistinct.
I'm a physicist with no biology qualifications, but it just sounded to me like you may have misunderstood the linguistic meaning. Apologies if I was wrong about that.
(…yeahyeah, selection bias, etc)