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.
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.
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.
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)
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.
burnte|1 year ago
wizzwizz4|1 year ago
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|1 year ago
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)
djhope99|1 year ago
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.