[djhope99]

Thank 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]

Yep, 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.

[wizzwizz4]

Those studies were designed to confirm Professor Sir Simon Baron-Cohen's "extreme male brain" theory (which, by the way, is a crock of shit). High androgen levels and high oestrogen levels are associated with autism (ref: https://doi.org/10.1038/s41380-019-0454-9) and there's no reason to believe the arrow of causality points in any particular direction.

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.

[munksbeer]

Would it be ok to ask how you're knowledgeable about this?

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)

[phrop]

munksbeer, please have your child evaluated by a developmental pediatrician. It will take a number of visits and if you are in the U.S. and it will most likely not be covered by insurance, but it is vital in helping you get the support your child may need. I am autistic and so is my child, growing up was hard for me and it is hard for my child, but we are able to provide them with a lot more understanding and affordances to make their life better.

[munksbeer]

We're in the UK, and we're trying. There is a lot of information around, and books written, on how to manage the process here in the UK, but the reality is that it takes a lot of time and constant pushing to eventually succeed in having your child evaluated. We're on the path though, thanks.

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.

[shubb]

In the UK, I got some support for this sort of problem. AFAIK my parents got a private diagnosis and then used that and letters from the doctor to build a case with the local authority. Local authorities are resistant to agreeing to anything because budgets are tight. I remember getting physiotherapy. This was 20+ years ago and the system may have changed

[wizzwizz4]

> Would it be ok to ask how you're knowledgeable about this?

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.)

[munksbeer]

> 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.

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.

[wizzwizz4]

> The slightest thing that doesn't go according to plan will result in a hyper-ventillating breakdown.

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...

[10]: https://www.wikihow.com/Boycott-Autism-Speaks

[djhope99]

Thanks for taking the time to write this. I appreciate it, I read it to my wife and she agrees we should stop thinking about the why.

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.

[wizzwizz4]

I will interpret your gratitude as license to infodump. (I have many thoughts, and few parents-of-children to share them with.)

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).

[wizzwizz4]

Oh, hey, the academics have started to study autistic morality from a perspective other than "autistic people are deficient". Here's one from 2020: https://doi.org/10.1177/1362361320939331