Arthur T Knackerbracket has processed the following story:
A study from the University of California San Diego reveals that differences in brain development associated with autism begin in utero, with larger and faster-growing brain cortical organoids in autistic toddlers correlating with more severe symptoms. This research opens new avenues for understanding and potentially treating autism.
Some children with autism face severe, enduring challenges including developmental delays, social difficulties, and possibly an inability to speak. Meanwhile, others may have milder symptoms that lessen over time.
The disparity in outcomes has been a mystery to scientists, until now. A new study, published in Molecular Autism by researchers at the University of California San Diego, is the first to shed light on the matter. Among its findings: The biological basis for these two subtypes of autism develops in utero.
Researchers used blood-based stem cells from 10 toddlers, ages 1 through 4, with idiopathic autism (in which no single-gene cause was identified) to create brain cortical organoids (BCOs), or models of the fetal cortex. They also created BCOs from six neurotypical toddlers.
Often referred to as gray matter, the cortex lines the outside of the brain. It holds tens of billions of nerve cells and is responsible for essential functions like consciousness, thinking, reasoning, learning, memory, emotions and sensory functions.
Among their findings: The BCOs of toddlers with autism were significantly larger — roughly 40 percent — than those of neurotypical controls, according to two rounds of study performed in different years (2021 and 2022). Each round involved the creation of hundreds of organoids from each patient.
Reference: “Embryonic origin of two ASD subtypes of social symptom severity: the larger the brain cortical organoid size, the more severe the social symptoms” by Eric Courchesne, Vani Taluja, Sanaz Nazari, Caitlin M. Aamodt, Karen Pierce, Kuaikuai Duan, Sunny Stophaeros, Linda Lopez, Cynthia Carter Barnes, Jaden Troxel, Kathleen Campbell, Tianyun Wang, Kendra Hoekzema, Evan E. Eichler, Joao V. Nani, Wirla Pontes, Sandra Sanchez Sanchez, Michael V. Lombardo, Janaina S. de Souza, Mirian A. F. Hayashi and Alysson R. Muotri, 25 May 2024, Molecular Autism.
DOI: 10.1186/s13229-024-00602-8
(Score: 3, Insightful) by Thexalon on Tuesday June 18 2024, @10:55AM (33 children)
"Am I just stupider than I realize? No, it's the autism spectrum people who are wrong."
I'm still not convinced autism should be classified as a "disorder": It sure seems to me like a lot of what's going on is that autistic folks are mostly just sick and tired of "normal" people posturing and getting things wrong, all the time. And their more annoying behaviors have to do with coping with the fact that those around them are too stupid to understand them a lot of the time.
Their main genuine weakness is that they're so used to being smarter than those around them that they have a hard time taking directions from people who do actually know what they're talking about. But that is surmountable if you in fact know what you're talking about.
"Think of how stupid the average person is. Then realize half of 'em are stupider than that." - George Carlin
(Score: 5, Informative) by Gaaark on Tuesday June 18 2024, @12:46PM (21 children)
Give me your phone number so i can call you the next time my son keeps me from getting sleep: he once went through a two month period of only getting 3 hours sleep per night. THAT almost killed my wife and me and my long and short term memory still hasn't returned fully (Try working full-time while getting 3 hours sleep.......)
My son is diagnosed severely autistic with cerebral palsy (makes his joints stiff), and is mostly non-verbal (Although I've been trying to teach him to say "T N T, Oi Oi Oi") and my wife and I are about the only ones who understand how to communicate with him verbally.
He communicates with a program on his Ipad with others who have learned how to use the program: he has written poems on it and stories about WW2 and how what the Nazi's did makes him cry.
Visually, you'd think he wasn't paying attention and had mostly 'checked out', but he picks up on every thing you say and sometimes echoes back words he finds interesting.
Autism is a communication disorder, and trying to find out what is going on in his head can be VERY VERY difficult.
You're thinking Sheldon and Big Bang Theory when you should be thinking Einstein at age two-ish: non-verbal and seems retarded but not.
Just glad he likes AC/DC, lol.
--- Please remind me if I haven't been civil to you: I'm channeling MDC. I have always been here. ---Gaaark 2.0 --
(Score: 5, Informative) by JoeMerchant on Tuesday June 18 2024, @01:40PM (12 children)
I will be back with more, but just want to drop this quickly:
Our son's growth was top 10 percentile his first year, except his head, that was off the charts large for his age until he was probably 4 or 5. He had a severe regression just before his 2nd birthday, and at 22 he speaks in one to three word sentences with a common vocabulary of maybe a dozen words.
He also reads aloud from anything he sees at better than 8th grade reading level. His hearing is exceptionally sensitive and sometimes he will repeat what you are saying quietly in the next room, while he is wearing headphones watching YouTube.
The "lack of pruning" theory fits him well. Circumstantial evidence also links organophosphates to his regression.
There are all levels of autism, and the main problem with it is the lack of understanding and support from the rest of society when it becomes too severe.
🌻🌻🌻 [google.com]
(Score: 2) by quietus on Tuesday June 18 2024, @06:58PM (11 children)
Sorry, but can you explain that 'lack of pruning' theory? Is it about the sensory/information filter not working correctly?
Also, you mention organophosphates: do you suppose there's a link between pesticide usage in the environment and autism?
(Score: 2) by Gaaark on Tuesday June 18 2024, @08:52PM (9 children)
Probably this:
https://www.newscientist.com/article/2370409-lack-of-neuron-pruning-may-be-behind-many-brain-related-conditions/ [newscientist.com]
I know our son was talking 'okayish' until around 1.5-2 years old, then he 'lost' mostly every word he had.
I wonder (if this theory could have/be affecting him) if it could be his brain WAS pruning, then stopped...
--- Please remind me if I haven't been civil to you: I'm channeling MDC. I have always been here. ---Gaaark 2.0 --
(Score: 2) by JoeMerchant on Tuesday June 18 2024, @09:40PM (1 child)
Our son's regression came pretty sharp and hard at 22.5 months. His brother was born 6 weeks earlier, and the weather snapped cold right then, so we thought it was some kind of flu he would come out of, but he never did.
🌻🌻🌻 [google.com]
(Score: -1, Troll) by Anonymous Coward on Wednesday June 19 2024, @09:38PM
Right after the 18 month vaxxx, but that can't be it.
(Score: 2) by JoeMerchant on Tuesday June 18 2024, @10:14PM (6 children)
We read to our oldest a lot since birth - a big one was the Tom Kitten cloth book: https://www.ebay.com/itm/285877569978 [ebay.com]
At 6.5 months, we were visiting my mother - she was still supporting his giant head on his floppy neck, but she was wearing a hat (hat: page 4 of Tom Kitten) and he reached up for her hat and said "hat". By 9 months he was supporting his own head, riding around in the stroller and cheerfully identifying animals: we had a cat that looked a lot like Tom Kitten, he called it "cat." He would meet neighbors walking their dogs, he would call them "cat." He saw pigeons out the window of the doctor's office, he called them "cat." 9 months old, after all, it's not like he was calling trees or cars or real-estate agents "cat," just the animals.
He was toddling around the house by 12-13 months. By 16 months he was "independently problem solving" dragging a stepladder from the bedroom down the hall to the bathroom so he could play in the sink... His language was pretty normal for his age, until...
I took him to the playground across from the house and he wouldn't play, it's like he was in a fog. I put him up on a platform he had slid down from many times, but instead of sliding down the slide and giggling with glee, he took halting steps around the platform and eventually stepped off into what would have been a 4' drop if I hadn't caught him. We had been taking digital photos for years, got a PS3 in 2007-ish timeframe, loaded up all the photos. PS3 album had an "AI smile detector" - starting with his regression, our "smile frequency" dropped from 40-45% of the photos (lots of landscapes and other non-smiling objects) to less than 2% of our photos. Nobody was having fun anymore, least of all our two year old.
We just moved into a rental house as his brother was being born. The landlord said "oh, I usually shampoo the carpets..." looking at the carpets, they were cleaner looking than any other rental house we had seen, virtually new looking in the kids' bedrooms. Rather than a bedframe to fall off of, bump into, and lose things under, we gave our oldest a mattress on the floor... the floor that I later suspected had been brutally pesticided a month or less before we moved in - couldn't smell it, but neither did we ever see a bug in that house. And, here's me: dad of the century, saying "nah, don't shampoo the rug my kids will be crawling around on for the next several months of their early development, we just want to move in ASAP."
Later, there were some fire ant piles in the yard which I spot-treated, and noted that the fire ant killer made the grass super-lush dark green: that's organophosphates. Not sure what the landlord used on the inside of the house.
Anyway... here we are now: 22.5 years old, moved into a group home 4 months ago, it's not perfect - it absolutely sucks in several aspects - but it's also better for him in some ways than anything we can do in our home. Bottom line is: they have funding for staff. Instead of my wife working as caregiver for two young men with Autism, they get around $500K per year that they spend on multiple staff to take care of six (intense behavior) young men, 24-7. Our son's only intense behavior that keeps him out of a "moderate" home is that he will elope - leave the scene, walk off into the distance, and sometimes into strangers' homes. It is a behavior we have been working on correcting for 18+ years, had a two year period with no instances of elopement from age 19-21, but in the past year he's done it 4 to 6 times (depending on what you call elopement... the two home invasions pretty much have to count.)
So, yeah, unusually big head during early development, even at birth 3 weeks premature via cesarian section, and it just about explosively grew after that. At maturity his head size might be top 20 percentile for his height, big, buy not unusually big.
🌻🌻🌻 [google.com]
(Score: 2) by quietus on Thursday June 20 2024, @12:50PM (1 child)
Which was the correct thing to say: the indoor environment is typically far more polluted (emissions of building materials like e.g. isolation, paint, glues, disinfectants, not to mention whatever that landlord treated the rug with) than the outdoors.
Also: no parent has ever succeeded in preventing their kids of crawling around on a floor, any floor at all, so don't blame yourself there.
The only thing you could have done -- if you knew back then what you suspect now -- was to throw that rug, and probably quite a few other items too, out. That landlord likely didn't stop there with his pesticide spraying: the wallpaper and woodwork in all likelihood got a treatment too.
(Score: 2) by JoeMerchant on Thursday June 20 2024, @03:16PM
A) at the time Autism was "so rare" - the awareness campaigns were not revved up yet, and nobody in our family had had a diagnosis
B) the link between pesticides and early brain development problems were barely on anyone's radar at the time - sure, pesticides are common sense suspects, but industry really had a good snow-job going about 'completely harmless to all mammals'.
C) we're new parents, and believing the "oh, your kids are so great, everything is going to be wonderful" snow job we were getting from all directions
The best thing we could have done at the time was not move to Houston in the first place, stay in Miami, hold our house for another year before selling it, sell it for an additional $200K profit and retire early to the mountains of Costa Rica.... but that's the path not taken - I actually had a job offer from a commune on the beach of Costa Rica doing EE / Software for a solar battery charging project, but I rightly guessed that that situation wouldn't last even 4 years - and the beach is too damn hot and buggy at latitude 10.
🌻🌻🌻 [google.com]
(Score: 2) by quietus on Thursday June 20 2024, @01:33PM (3 children)
Old friends from university days have 2 kids with autism, now at ages 16, 17. The daughter is gifted, creatively (drawing, playing the violin) but very shy; the son was fluent in Dutch (native language) and English already at age 5-6, but can't keep focused and is socially awkward. The best they hope for him is assisted living.
If you look at them on the outside, you'd think a nice, normal family -- but she got into a depression during the whole traject. The stories about administration and finding a good place for treatment -- literally camping in front of a school for days to get placement ... she once mentioned how embarassing it can be, in a social setting, when the son starts acting odd, and how difficult she found it when the parents-in-law thought they were exaggerating.
I hesitate to ask them about the difficulties they've met, and are still meeting.
(As to the subject of the sub: the son indeed had a remarkably big head when still a toddler.)
(Score: 3, Informative) by JoeMerchant on Thursday June 20 2024, @03:26PM (2 children)
Big head is clearly linked...
When our kids were 1 and 3 (first one clearly diagnosed, clearly nothing we could do about it except hope that he "snaps out of it" eventually), I would come home from work and just pass out on the sofa - no, work wasn't that tiring, the feeling of helplessness was that depressing. People in public have over 99.9+% of the time been anywhere from acceptingly tolerant of our kids all the way through wonderfully supportive - for the moment. What we have lacked through the years is anyone willing to engage in deeper support, like a school. Most peoples' generous compassion seems to fizz out after a few minutes to hours, and that has been the experience of our friends with profoundly autistic children as well. There are paid service providers who claim to "work with" your kids to help them - for 30 minutes to a couple of hours at a stretch, but in reality most of those are just respite baby sitting services, charged at therapeutic rates.
20+ years post diagnosis, we have our eldest in a group home and are getting all kinds of encouragement to "take time for ourselves" - but... after two decades of 24-7 devotion to helping our kids grow to live their best possible lives, "take time for ourselves" barely means anything anymore.
🌻🌻🌻 [google.com]
(Score: 3, Insightful) by quietus on Thursday June 20 2024, @07:10PM (1 child)
The daughter of my brother is now nearing the end of her first work year as a special needs teacher, kindergarten level up to the ages of 6,7.
If I may ask, as you mention school support, what is the state of special ed where you live (my impression was that the States are a bit ahead there)? Can you explain what you mean with 'deeper support' here -- is it that you, as parents, were just taken for granted, nobody thinking about how you felt, the doubts you wrestled with, or that the schools didn't really enroll you in the traject they were planning in therapy for your children, or didn't notice or offer tips about how to deal with difficult situations at home, the struggles you'd had as a couple in the decisions you had to take?
I realize that, maybe, these questions are too sensitive in some respects, so feel free to just ignore them. I ask them because I guess there might be others on this site who are, or will enter in future, in a somewhat similar situation. Also, I tend to ask direct questions without thinking them through, so there's that: feel free to tell, or not tell, me off.
(Score: 3, Informative) by JoeMerchant on Thursday June 20 2024, @08:58PM
Our experience of special ed has been highly variable. Our first exposure was in Houston ClearLake ISD (a high-tax school district with good programs) and they sort of just did what you would expect - not knowing anything about what we were getting into. Our son made excellent progress through exposure to his peers, but after 1.5 years in that program, we moved away to Florida.
Where we moved happened to be in "the best school for Autism" in the county - principal had developed an inclusion program over the previous 10 years and it was working really well. Our first year there was more of the same from Houston ISD - good support for both kids now, although one teacher got us to sign a waiver to use a "restraint chair" designed for children with problems of falling out of their desk chair. We understand our high energy child needs to be reminded to sit still a lot, but we signed it on the expressed understanding that it would only be used rarely, as needed. Yeah, so that turned out to be constantly the whole time he was in school he was strapped to his chair-desk, to the point that when it was his turn to put a piece on mat-man he stood up with the chair-desk attached to his butt/back and waddled forward to take his turn.
Then, the (vast) majority of the schoolboard decided that the autism program at our home elementary school was "too good" "attracting too many special needs families to the district..." and they proceeded to dismantle the program with heavy equipment, starting with firing the principal. As you might imagine, the next several years in that county were basically a living hell of fighting for services guaranteed by law and having the barest possible compliance from the schoolboard. We eventually did as they wished and moved away to a bigger city (also because the job market in the bigger city is much more lucrative.)
The big city is better, still uneven, probably not as good as ClearLake, but it worked pretty well for our younger son - although we didn't send him to public middle school, homeschooled instead, and post-COVID was a lot of homeschooling too. I should mention that the public schools have been nearly the only schools available to us - at any price. When we interview at private schools they almost all come back with "you have beautiful children, but we're just not equipped to meet their needs..."
I have heard tales that the North East US tries harder and has more intense programs for kids with autism, sometimes I wonder how much better off we would have been had we gone there. We met a girl about our sons' age who went through most of school in New York and she is doing o.k. working as a hotel receptionist two days a week, 4 hours a day, but I don't know that our children put through all the same programs she had would have risen to her levels of communication abilities. We did have a very good speech therapist work privately with our kids (after the schoolboard fired her) and she made progress, to a point, then it plateaued, as most good things seem to.
I don't feel that we've ever been taken for granted as parents, the acknowledgement is always there, but the engagement not so much. I had a boss whose wife was big into cat rescue and they both considered themselves "really good, helpful, kind, caring people." They insisted, many times, that we let them watch our kids while we take a night off, so eventually we agreed - three hours - they never offered again. Any two boys four and six years old would be a challenge for recent college grads used to taking care of cats, but then our kids were (and are) extra-special, they never offered again. I believe this was around the time I was sewing the leather sofa back together every few months, the TV was mounted 5' above the floor for obvious reasons, etc.
Our friends with severely autistic children have described all kinds of people who "really want to help" and they come around a few times, maybe five or six, but invariably they get discouraged when they can't make any progress and they just fade away again.
What I would wish for in the non-existent "depth of engagement" field would be friends, resources, service providers who do more than just keep the kids from escaping the room while they have them. Work with them on a regular basis, have patience with the fact that no, even after a year of trying, you still have not succeeded in potty training our six year old, but that doesn't mean that you quit - what _can_ you teach him that's helpful? (He finally potty trained at 7, his younger brother followed suit within two weeks, peer modeling WORKS! but when you're stuffed in a classroom with all the same severe autistic children, what are they going to learn from their peers?)
Shortly after the we moved to the big city, our neighbors invited us over for beers, and the kids played together - pretty well, except, their oldest daughter (7) invited our youngest son (10) into her bedroom and had him dress up in her princess costumes... so within 45 minutes she's got a boy 3 years older than her naked in her bedroom.... yeah, never invited back again. What I would have preferred would have been a little more controlled engagement, but they're more all or none kind of people...
We've had all kinds of tips, one of the most applicable to our kids - oldest especially - is acronymed OWL: Observe, Wait, Listen. What that means in practice is: when you want to communicate with your differently abled person, first Observe them - take the time to get "into their headspace" before initiating - are they likely to be receptive to communication at the moment? If not: Wait until they are. then communicate in a clear way that they're likely to understand, not some stream of consciousness cascade of words that you entertain your neurotypical conversation partners with, something clear and concrete. Then Wait some more and Listen. Don't continue spewing more words at them before the first set has processed. Our older son often takes 20-30 seconds to process something you tell him, when he's not anticipating what you're about to say. Listen to what they eventually say, take your time to process it before trying to cram more content through the channel... We're much more successful communicating with our son this way than most "professional caregivers" teachers, therapists, etc. seem to be in their typical professional operating modes. And, yes, speaking your words slowly and loudly is just as insulting to autistic individuals as anyone else - you don't have to talk down to them, just understand the limits of their communication channels.
Our biggest decision, since we only really had one school option most of the time, was to home school or not to home school. We did a lot of both, and each tended to be good when it was just starting, building up to completely futile after a couple of years. So, choosing when to go back to school, when to pull out - that was our main "lever" on life. There were all kinds of therapies: horse, speech, music, OT, PT (Physical therapy got more speech progress than speech ever did), surfers for autism... all seem to follow that same pattern of great at first, leveling off after a while. So there were also the choices of which therapies to pursue and when to pull the plug. At home there was "walk around the neighborhood", "ride in the convertible" and "ride on the boat" therapies - more of a stress maintenance thing than any particular "successfully achieve in three out of five opportunities" kind of thing. Mostly we tried / try to include them in as much of our normal activities of daily life as we can: shopping, concerts, movies, etc. And those simple things are not without pitfalls too, but that doesn't mean you give up altogether.
🌻🌻🌻 [google.com]
(Score: 2) by JoeMerchant on Tuesday June 18 2024, @09:36PM
First organophosphates autism link study I read came from Italy to n 2004, this is more recent: https://pubmed.ncbi.nlm.nih.gov/35500857/#:~:text=Abstract,autism%20spectrum%20disorders%20(ASD). [nih.gov]
They are both pesticides and fertilizer.
Early neurotypical brain development involves pruning a lot of connections, there has been a fair bit published about this not happening as thoroughly in autistic brain development.
🌻🌻🌻 [google.com]
(Score: 2) by Thexalon on Tuesday June 18 2024, @10:10PM (1 child)
So you know, I've been around kids with autism diagnoses, including being responsible for their care for extended periods.
Is there stuff that's annoying as heck? Yes. But your kids' behavior sounds a lot more like the cerebral palsy than the autism (I've been around that more than a bit too).
"Think of how stupid the average person is. Then realize half of 'em are stupider than that." - George Carlin
(Score: 2) by JoeMerchant on Tuesday June 18 2024, @11:40PM
We've got nothing resembling CP. Fine motor skills suck, but that's true for generations in my family. Excellent balance, loves to run, has good receptive language skills but tends to need some processing time if you say something he wasn't anticipating (he anticipates most things and will often answer questions before they are fully asked...)
We've got friends with kids with CP - it's another challenge, and can get the autism label in some instances.
Then there's our younger (now 20) who is significantly more functional: doesn't run away, for one thing. He's "too smart" for the Down's specialty school he's in (80% Down's, 20% Autism students) - but... his main challenges are in social skills, where he's significantly behind most of his schoolmates. His schoolmates actually don't have much of a problem with him, but the staff gets tweaked several times a year about him doing something "unacceptable" like calling a classmate an ape. Classmate didn't mind, our son was on a kick "we're all apes, I'm an ape, you're an ape, she's an ape..." he's not wrong technically, but he doesn't get that he should shut up and stop repeating it when someone tells him to. I hesitate to slap "developmental ages" on anyone, much less my own kids, but as a shortcut, there are lots of areas where he acts like he's 4 to 6 years old, in a 20 year old body. You can _almost_ hold a conversation with him, but "Wh" questions and concepts like "favorite" just don't process for him. x^2 + 3x = 28, x = ? he can tell you 4 and -7. What's your favorite flavor of ice cream? Crickets. Where did you go yesterday? "I want chocolate cake for dessert." Occasionally we'll get a semi-complete inventory of "who" was at a recent event he participated in. Why? Forget it.
Can he be taught these things? Apparently not. At this stage it seems like finding ways to live with the deficits is the more productive path.
Back to TFA: yeah, he had a big head too... not as big as his brother's but still unusually large.
🌻🌻🌻 [google.com]
(Score: 3, Insightful) by JoeMerchant on Wednesday June 19 2024, @02:49PM (4 children)
>he once went through a two month period of only getting 3 hours sleep per night.
My son, now 22, never slept more than 7 hours a night. He eventually got his own "suite" in our house, bedroom + bathroom behind a door which he locked himself at night - much more practical than locking the refrigerator when we went to bed / shutting off the gas supply to the stove, etc. I tried encouraging him to not lock that door and just go to sleep, but he would lock himself in.
The big complaint from the group home is that he "doesn't sleep" like the other residents. They want to put him on similar meds like the other residents take. When we have brought him back from going out, after 6pm all the other residents are already asleep and apparently they sleep through until around 7am.... yeah, don't think we want to put him on _those_ meds.
🌻🌻🌻 [google.com]
(Score: 2) by Gaaark on Wednesday June 19 2024, @10:15PM (3 children)
The two months my son wasn't sleeping, my wife and i took turns 'listening for him', which means my wife would listen for him because she was a light sleeper.
When she'd be too exhausted and was afraid she wouldn't wake up, I'd go in and sleep on his bedroom floor in front of his door, because i am a heavy sleeper.
To get out of his bedroom, he'd have to step on me and 'clunk' the door into my head which would wake me up, lol.
Left on his own, he'd go outside, probably naked. He did this once, but only went out on his swing. Luckily, he's never wandered away......knock on my wooden head....
His school once wanted us to put him on a drug to 'calm him down': we tried it (Risperdal). One small drop. He spent the next 5 minutes spinning in a circle, then was hyper like crazy. We only gave it to him that one time, and now we only give him natural products which he reacts normally to.
Yeah... we're not fans of drugs/meds. 6pm to 7am.... yeah..that's not right. They're missing out on sooo much: shit, 6pm on should be social time for them, even if it's just 'close/next to' social, watching tv or listening to music 'together'. Lazy or over-worked/burnt out staff.
--- Please remind me if I haven't been civil to you: I'm channeling MDC. I have always been here. ---Gaaark 2.0 --
(Score: 2) by JoeMerchant on Thursday June 20 2024, @02:33AM
We tried Risperdal for a couple of months around age 14, decided it was clearly doing more harm than good - increase in weird behaviors, tics, decided to quit before moobs showed up. Had much better results with Dronobinal (marijuana derivative) on an as-needed basis, which often would be a month or more between pills: high anxiety situation building? Have a chill pill. Worked great like that, terrible on a regular basis like the drug company wanted you to take it - taken regularly it was like he re-baselined back to his original behaviors and withdrawal of the pills made him worse, but we did the occasional use thing for several years until insurance coverage went to hell, and availability followed. A compound of dextromethorphan and quinidine (studied and published as Nudexta, @ ~$1500 per month) does really well for helping impulse control with really minimal side effects, the custom compounded variant is more like $60 per month - that's what he has been on for the past 3+ years. We're not fans of meds at all, but this one seems to be a good one for him.
We really tried to teach living without being locked in, but after having to call the police because one or the other had vanished a few times, decided that locks on the house, and later the eldest's room, were better than continued dangerous situations.
The group home he's in calls their exterior door locks "delayed egress" - they have a really practiced speech about how "they have the right to leave whenever they want, we just have to delay them until the proper supports are available to keep them safe outside" - of course, without us personally driving an hour to be there the supports are basically never available. We have been fighting for 4 months to find "companion services" that will serve him, finally got one and now they tell us that his companion services funding has been usurped by day program "significant additional needs" and we're going to have to get approval for additional funding for his companion that we finally found - so in the meantime we're paying $20 per hour out of pocket to keep the companion coming occasionally.
Big brain, stuck in a little box... he's definitely happier when he gets out once in a while, but most of the time he seems to like it in there... he definitely requested removal from a couple of school programs, but he always wants to go back to the group home after an outing, hopefully they didn't "Stockholm Syndrome" him in those first 30 days when they told us we shouldn't visit in person...
🌻🌻🌻 [google.com]
(Score: 4, Interesting) by Azuma Hazuki on Thursday June 20 2024, @06:34AM (1 child)
Speaking as someone who works in pharmacy...the antipsychotic class is NOT going to help him. He isn't mentally ill, he's developmentally atypical, and that entire class of drugs works by more or less saturation-bombing a number of important receptors. They have effects on serotonin, dopamine, muscarinic acetylcholine, even histamine receptors. And then there's the risk of heart rhythm issues (long QT syndrome) and metabolic derangement these things cause. Clozapine, considered the third-line big gun, has killed people by causing neutropenia and needs white blood cell counts verified on a regular basis for dispensing.
If they are serious about altering his behavior with medications, I would actually guess Buspar (buspirone) would be helpful, as it directly agonizes the 5-HT1A receptor. Even then, there is something incredibly creepy about them basically wanting to drug him into convenient behaviors.
I am "that girl" your mother warned you about...
(Score: 2) by Gaaark on Thursday June 20 2024, @09:58PM
Yeah, we don't give him any of that sh*t anymore.
The strongest thing he's on is singulair for his breathing/asthma.
And occasionally Chivas Regal, lol.
--- Please remind me if I haven't been civil to you: I'm channeling MDC. I have always been here. ---Gaaark 2.0 --
(Score: -1, Troll) by Anonymous Coward on Wednesday June 19 2024, @09:34PM
"stories about WW2 and how what the Nazi's did makes him cry."
"Nazi" is an anti-White Jewish slur and their atrocity propaganda used to get gullible Whites to go to war against their own kinsmen is and was bullshit. IDK if you're a willfully ignorant Shabbos Goy slave, or a lying subversive Jew, but if your kid is White, you should be ashamed of your self. What kind of grown "man" still believes in 6 million dead, gas chambers at "death" camps, The Final Solution=death? Stupid, cowardly, lazy fucks.
(Score: 2) by aafcac on Tuesday June 18 2024, @09:24PM (6 children)
It's going to vary. This isn't something that's likely to ever have a clean answer. A lot of it comes down to the specific combination of traits. For me personally, the big thing was knowing that I had a bunch of sensory profile issues to figure out. The exhaustion as a result of the constant work of managing my sensory inputs and social interactions.
It was a massive issue when they put all the various autism related disorders into one diagnosis without really considering if they all belong together. They should have probably just clarified the edges instead of just cramming them altogether. The main reasons for having a diagnosis is for research and to help communicate needs. Combining them all together just made it harder to research.
There's been pretty much no effort into properly addressing the needs of those with higher intellectual levels, it can take quite a few years for the traits to show up for years later than usual.
(Score: 2) by JoeMerchant on Tuesday June 18 2024, @11:58PM (5 children)
>There's been pretty much no effort into properly addressing the needs of those with higher intellectual levels
That's a matter of perspective. Our kids with lower communication abilities (masking higher intellectual levels) also seem to have pretty much no effort put in to helping them cope with society. I can sum it up with one particular elementary Principal's statement "Oh, I have the perfect place for him." Meaning: the green room, isolated from all the "normal" students all day long. Yeah, he's made huge progress in the past 3 months being included with normal kids his age, started reading out loud, legitimately won "best reader at morning meeting" for his K-2 class, but because he gets frustrated when you regress his math lessons to "colorfish" now he needs to be locked in a closet for the next 11 years? Yeah, that's going to help him learn how to deal with other people real well.
🌻🌻🌻 [google.com]
(Score: 3, Interesting) by aafcac on Wednesday June 19 2024, @03:28AM (3 children)
It definitely happens at both ends of the distribution. The issue tends to be that not only are those at higher ability levels left out, but we're not even really allowed to get a proper diagnosis to allow for us to make our own decisions about what's best for us. IIRC, folks diagnosed autistic disorder, PDD-NOS and AS were particularly hard hit in terms of the criteria changes without there being any real justifiable benefit. A bunch of aspies had to be grandfathered in to try and neutralize the complaints of people being kicked of the spectrum, but grandfathering people in wouldn't be necessary if they were still within the diagnostic criteria for the spectrum.
Really, there is no point where it's particularly easy, but there's been a definite excessive concern over the "over-diagnosis" problem without really considering the fact that even with the increase in diagnoses that there's still a lack of resources and the folks that are towards the higher end of the intellectual ability within the spectrum don't really require much in terms of support. If I had just known that I could put ear plugs in, I would have done far better in 2nd grade math than I did. And if I had any of the strategies that are taught to ADDers and those with executive functioning, I likely would have been able to set my sights a bit higher.
It's truly unfortunate that many people seem to miss the fact that it's being treated as one spectrum when it's convenient, and as separate spectra when that's more convenient and convenient often has nothing to do with the needs of any of the people that are directly impacted by it. Realistically, we should all be in this together, but there's this attitude that real austic people are always going to show overt and undeniable signs early on, and that's not necessarily the case.
As far as your kids go, that's pretty much illegal to treat it like that. All kids have the right to an appropriate education and there's a reason why they've been mainstreaming as many kids as possible. Pullouts and separate educational environments have caused many problems over the years.
(Score: 2) by JoeMerchant on Wednesday June 19 2024, @11:37AM (2 children)
As discussed elsewhere, illegal happens all the time. The only recourse we had was to fund a lawsuit against the county. They would have clearly lost on every point of law, but won the legal process via delay and expense of bringing proof to court. The local county court judges were mostly poker buddies with the school board chairman and members who had and probably still have an agenda to get "those kids" out of their classrooms and preferably out of their county. Private tutoring would have been cheaper and better for our kids, the richer autism parents in the county did just that, literally hiring our 1st grade special needs teacher to homeschool their children.
Our son had/has sensory issues with fluorescent lights and earplugs, he wore big over the ear hearing protection earmuffs ($1.99 from Harbor Freight) through elementary school. I had terrible pain from ultrasonic security systems until I lost some of my hearing iny late 20s.
A blanket description that seems to work well regardless of diagnosis is: "differently abled.". They seem to have been merging gifted and special needs into a single administration here, and if done well I think that could be a good approach. Most non-neurotypicals are not "retards" in all dimensions. When you get honest about it, the whole lock step grade progression system is terrible for just about everything except socialization, even for the neurotypicals.
🌻🌻🌻 [google.com]
(Score: 2) by aafcac on Wednesday June 19 2024, @04:38PM (1 child)
That's one of the issues with the legal system sometimes, when you're fighting one of these things, it's usually too late for the person that's been harmed to get a proper resolution, if you're lucky, you get money later to try to make up for it and the next person in line gets the proper help. The sad thing in this is that much of the stuff that ND folks need isn't expensive and/or does benefit the other students. There's just a culture of encouraging classroom behaviors that don't make much sense in terms of education.
Oh yea, those security systems were bad, but those stupid TVs that would be mounted all over the place at college were the worse. That was absolutely painful and they'd be everywhere. It wasn't like I could just get through that spot and be OK, they'd be like every hundred feet or so.
I wish that the earmuffs helped me, I've got ideopathic tinnitus to go along with the hearing sensitivity, so there is an extremely specific level of noise that i need, too little and the tinnitus generates more, and too much and I'm over stimulated.
(Score: 2) by JoeMerchant on Wednesday June 19 2024, @05:03PM
>it's usually too late for the person that's been harmed to get a proper resolution,
Worse, in order to "make a case" we would have to leave him in the abusive school system... We really didn't want to hurt our children in order to potentially make things better for those who come after - money never hurts, but all the money in the world doesn't make up for three to five years of virtual abuse that can be avoided.
>much of the stuff that ND folks need isn't expensive and/or does benefit the other students.
While our focus was on improving our children's ability to get along in society, there's also a huge benefit in exposing "typical" children to children with differences - this was the BIG thing that county was fighting against. Where I was raised, I never saw a significantly disabled person, other than limb dysfunction due to injury, pretty much throughout my education including University. They were super rare as compared with their actual occurrence in society at large. My first awareness of Down's Syndrome came in 12th grade when one of the wrestling team stars convinced a Down's girl to give him a blowjob in the vacant band room...
I have been lucky to only have transient tinnitus - once it was extremely painful but only triggered by a particular woman's voice - she was a consultant we brought in for a couple of days and I literally couldn't stand to be in the same room with her.
🌻🌻🌻 [google.com]
(Score: 3, Insightful) by Gaaark on Wednesday June 19 2024, @10:20PM
We put our son in Special Olympics (he's in the 'lower' levels).
He does t-ball, basket ball and bocce ball and loves it. He even has many 'friends', as in people who say hi to him and include him (pass the ball to him), etc, but seeing as how he's severely autistic, it is mostly one way social.
But you can tell he likes it: every once in a while, he gets happy that he did well and his friends are clapping for him... it's just usually you have to tell him to wave back and sometimes you have to prompt him to high-five back or fist-bump.
Plus, you get to hear what schools are good/which teachers are bad, things to go to...
--- Please remind me if I haven't been civil to you: I'm channeling MDC. I have always been here. ---Gaaark 2.0 --
(Score: 3, Interesting) by JoeMerchant on Tuesday June 18 2024, @11:49PM (1 child)
>I'm still not convinced autism should be classified as a "disorder"
Inasmuch as all psychiatric "disorders" tend to have the qualifier "to such a degree that it interferes with normal daily living" - yeah, autism fits that pretty well, but only because society has a problem with autistic behavior.
As far as "curing autism" - we don't think that's an appropriate mindset at all. First: it's a developmental difference, by the time we notice the difference, the structures are already there that cause the differences. It's who they are, there's no cure because there's nothing really "dysfunctional" any more than marine biologists spending 50 years trying to understand whalesong and continuing to fail is "dysfunctional" on the part of the whales. Teaching autistic individuals skills enabling them to function in modern society? Yeah, that's worthwhile.
A lot of native cultures tended to make their autistic tribe members "Shaman." They were different, strangely wise, not your favorite date for the fire dance, but valued and respected members of the society.
🌻🌻🌻 [google.com]
(Score: 2) by aafcac on Wednesday June 19 2024, @03:31AM
Definitely, I don't think you'll hear many people suggesting that curing aspects of it like where issues relate to basic needs. I think it would be fabulous to reliably know when I'm hungry or thirsty, I don't think having things like that cured would ruin the world or take away from any of the essential bits of autism that do benefit us all or change who I am as a person the way that a cure would. Whereas a lot of the stuff that people do want cured is completely for the benefit of others and probably doesn't even need to be done.
(Score: 2) by mcgrew on Wednesday June 19 2024, @09:52PM (1 child)
Calling it a "disorder" is a "polite" way of saying nerd, dork, geek... It obviously runs in my family, I'm an ass burger, my oldest has it to the point of disability, my youngest has an IQ almost as high as mine.
Impeach Donald Saruman and his sidekick Elon Sauron
(Score: 3, Interesting) by JoeMerchant on Thursday June 20 2024, @02:35AM
We feel that our youngest benefited significantly from all the "learning experience" BS we went through with the eldest in schools, programs, etc.
🌻🌻🌻 [google.com]
(Score: 3, Interesting) by SomeGuy on Tuesday June 18 2024, @12:10PM (6 children)
Here I am, brain the size of a planet - and that makes me like, you know, 'tarded and stuff.
It's become as bad, if not actually worse, than the movie Idiocracy where characters considered smart people "'tarded" and "faggy".
"Autism" is, according to everyone else, a disability. "Asperger's syndrome" was literally created by Nazis.
But I'd rather sit in a corner and solve complex problems rather than go shmoozing with these idiotic small-brained shitsacks who are so primitive they still seriously believe in imaginary sky fairies.
I hate this planet.
(Score: 3, Touché) by Gaaark on Tuesday June 18 2024, @12:55PM (4 children)
I agree: I still wonder are WE the aliens or are all the others.
Hell is other people.
The Bible is oral history written down hundreds of years after the events. My family can't agree to what happened 10 years after an event that happened to us, but we're supposed to believe the Bible is the true word of God and sure you can believe it's all true. Bull-ship!
People can know Santa is not real, but OMG, God IS!
God is just fear idealized.
"Please don't let my son die! Please don't let my crops fail! Please don't let this bad thing happen to me! Please let me win the lottery!"
THAT is why God exists: people can't control what happens and that makes them afraid. (Unless you're an Evangelist, then God exists so you can extort money from people who are afraid).
--- Please remind me if I haven't been civil to you: I'm channeling MDC. I have always been here. ---Gaaark 2.0 --
(Score: 3, Interesting) by JoeMerchant on Tuesday June 18 2024, @10:24PM
In 4th grade (1972-ish) I had a several day paranoid fantasy that I was from Mars and brought to Earth to torment and study how Martians react.
Myself, my father, his father, my father-in-law, and several of my mother-in-law's relatives are clearly on the autism spectrum, but at least average or better functioning in society by most measures. My brother (born 1973) barely launched into independent functioning in society around age 45, and my children (born early 2000s) need extreme levels of support.
In the early 2000s we lived next to Space Center Houston. The kids' pediatrician's exam room windows looked across NASA Road 1 at the buildings surrounding mission control. As we were expressing our early concerns about our 2.5 year old's autistic tendencies she (Indian) said "oh, he's probably autistic. That's O.K., over half the guys over there (waves at NASA) are definitely autistic. Just get him a good wife and he'll be fine..." Nice Indian perspective, the arranged marriage. Too bad she was completely clueless about the varying degrees of autism. We might possibly "find a good wife" for our younger son, but he - and most likely she - are going to need supports to function in society most, if not all of their lives. Our elder son isn't much in the market for wife or girlfriend, but he does have 24-7 female staff taking care of his food, laundry, and bathing him.
🌻🌻🌻 [google.com]
(Score: 3, Interesting) by mcgrew on Wednesday June 19 2024, @09:57PM (2 children)
You're almost completely offtopic, except for his last trolling sentence which spared you. But tell me, how did some guy ten thousand years ago come up with a birth of the universe story that matches the "bug bang"?
How did Isiah describe what it will be like when the sun swells? Those were both supposedly unknown before the last century.
Impeach Donald Saruman and his sidekick Elon Sauron
(Score: 2) by Gaaark on Thursday June 20 2024, @10:19PM (1 child)
Do you mean this:
"The moon will shine like the sun, and the sunlight will be seven times brighter, like the light of seven full days"
He's not describing the sun swelling due to physics, he's telling what God says he'll cause to happen.
The same guy who says:
"O people in Zion who dwell in Jerusalem, you will weep no more. He will surely be gracious when you cry for help; when He hears, He will answer you."
Let's ask those in the Jerusalem/Palestine area about that one.
--- Please remind me if I haven't been civil to you: I'm channeling MDC. I have always been here. ---Gaaark 2.0 --
(Score: 2) by mcgrew on Saturday June 22 2024, @01:45PM
Yes, that sure looks like the sun swelling to me. As to your verse, it is referring to the people alive at the time, not six thousand years later. Context matters.
Impeach Donald Saruman and his sidekick Elon Sauron
(Score: 3, Funny) by JoeMerchant on Tuesday June 18 2024, @10:15PM
>I hate this planet.
Channeling Marvin the paranoid Android [wikipedia.org]?
🌻🌻🌻 [google.com]