upstart [soylentnews.org] writes:
Autism Prevalence Reaches 61.8 Million Globally, Study Shows:
[Editor's Note - See disclosure that several authors have ties the to pharmaceutical industry--JR]
The global prevalence and rank of nonfatal burden of autism spectrum disorder are high, according to a review published online Dec. 19 in The Lancet Psychiatry.
Damian Santomauro, Ph.D., from the University of Queensland in Archerfield, Australia, and colleagues conducted a systematic literature review to estimate the global prevalence and health burden of autism spectrum disorder.
The researchers found that in 2021, an estimated 61.8 million individuals were on the autism spectrum globally. The global age-standardized prevalence was 788.3 per 100,000 people, which was equivalent to 1,064.7 and 508.1 males and females with autism per 100,000 males and females, respectively.
Globally, autism spectrum disorder accounted for 11.5 million disability-adjusted life-years (DALYs), which was equivalent to 147.6 DALYs per 100,000 people. Age-standardized DALY rates varied from 126.5 to 204.1 per 100,000 people in Southeast Asia, East Asia, and Oceania and in the high-income super region, respectively. Across the lifespan, DALYs were evident, emerging for children younger than 5 years (169.2 DALYs per 100,000 people) and decreasing with age (163.4 and 137.7 DALYs per 100,00 people aged younger than 20 and aged 20 years or older, respectively). For people younger than 20 years, autism spectrum disorder was ranked within the top 10 causes of nonfatal health burden.
"We hope that this study provides a foundation for future research and policy interventions, so that key stakeholders work to ensure that the unique needs of all autistic people are met, contributing to a better, more inclusive, and more understanding future," the authors write.
Several authors disclosed ties to the pharmaceutical industry.
More information: Damian F Santomauro et al, The global epidemiology and health burden of the autism spectrum: findings from the Global Burden of Disease Study 2021, The Lancet Psychiatry (2024). DOI: 10.1016/S2215-0366(24)00363-8
(Score: 5, Insightful) by JoeMerchant on Friday January 03, @06:03PM (30 children)
While putting the big numbers on "the spectrum" can get it attention as a whole, lumping profound non-verbal autism together with quirky trainspotting Aspergers' is doing both a tremendous dis-service.
Our State legislated "Centers for Autism and Related Disorders" funding decades ago. Due to the overly broad definition of "Autism Spectrum" that funding often gets preferentially distributed to "the fun ones" that are easy to tell good stories about, leaving the more profound cases with no services - while the legislators respond "We already fund millions of dollars for Autism care."
I think it was the DSM-VI which killed Aspergers' as a distinct group and lumped them in with Autism.
What needs to happen instead is recognition of the vastly varied needs of individuals on the spectrum, and distribution of resources which don't ignore certain groups, particularly the groups with the highest levels of need.
Incase you aren't aware: https://en.wikipedia.org/wiki/One_Flew_Over_the_Cuckoo%27s_Nest_(film) [wikipedia.org] isn't so far different from today's reality for people with significant disabilities. They've shut down the big institutions and distributed the clients into group homes of 6 across typical neighborhoods. You see, it's easier to put a quick white-wash on a house for 6, or pass off a bad inspection as an isolated incident. The vast majority of clients are on chemical restraint prescriptions, not called that outright of course but they're being given sedatives as a convenience for the caregivers, oh that's illegal too but when you take half a glance at the paperwork that Seroquel Rx has no associated Dx, no evaluation, no followup.
This autistic man was in such group home care for 20 years, starting from the day he aged out of the school system, until he died in a van in a parking lot in the summer. He's far from the only autistic individual the facility was leaving outside in vans "for the convenience of the caregivers" oh, wait, that would be illegal, and how can you prove that when all records are redacted to ensure the patient's privacy is respected? https://www.actionnewsjax.com/news/local/searching-answers-police-investigate-mans-death-front-baymeadows-health-center/2FBJ6E6UPBCPVCCTJSQD25DNMM/ [actionnewsjax.com]
They say " the unique needs of all autistic people are met " - but what lawmakers hear is: " oh yeah, like my little nephew who won't shut up about airline schedules, yeah he really does need help. "
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(Score: 3, Interesting) by aafcac on Friday January 03, @06:54PM (25 children)
Yes, and I think the community understands that, it's mostly the people that write the diagnostic criteria that don't. Asperger's probably should have remained a separate thing, as there is evidence that it's a separate thing from the other developmental conditions that were lumped together. Reading various research papers on the topic, you see it often times being used interchangeably with Schizoid Personality Disorder, which is also a condition that is oddly grouped with Schizophrenia and the related psychotic disorders even though it doesn't really have much in common with the other disorders. Schizoid Personality Disorder itself is likely to get the axe in the near future as it's an increasingly rarely used diagnosis as most of the people who had qualified for it are now considered either Avoidant Personality Disorder or Paranoid Personality Disorder and the remaining diagnostic criteria look suspiciously like AS with more dissociation and alexathymia at a somewhat older age of initial recognition.
The removal of the Pervasive Developmental Disorder-Not Otherwise Specified was a particularly bad move as having a diagnosis that can be handed out when most of the criteria are there or there's some abnormality in what's going on permitted people to get help, without polluting the research and gave researchers a quick way to find people that could potentially represent a new diagnostic label.
(Score: 2) by JoeMerchant on Friday January 03, @07:55PM (24 children)
Our son was initially diagnosed PDD-NOS because, at age 2 Autism diagnosis wasn't possible in 2004.
I wonder how much the Rx (ultimate endpoint of most diagnostic workups) drives the categories. Risperidone is an antipsychotic indicated for schizophrenia but commonly used in Autism... are they shaping the categories to match the applicable treatments?
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(Score: 4, Insightful) by aafcac on Friday January 03, @08:13PM (1 child)
I'm not sure that's it, I think it's a bit of social pressure because there was an "overdiagnosis" problem and a bit of the working group prioritizing having clean boundaries to increase reliability of the diagnoses without properly considering the ramifications of doing so.
As far as pharmaceuticals go, I doubt it, the prescription of medications has more to do with the symptoms than it does the disorder. Sure, things like resperdol tend to associated more so with certain disorders than others, but at the end of the day, if the related symptoms aren't there and aren't improving sufficiently for the liking of the doctor and patient, it won't be prescribed.
All of this is rather complicated, which is why they should have waited, these diagnoses were only added with the DSM IV, removing them the next revision is pretty quick, they didn't even start researching masking in autistic people until round about 1999, which means that there was only a few years worth of research related to that before they yanked all of the diagnoses. I don't think that anybody can credibly claim that there weren't issues, but when you add or remove a diagnosis that has an impact on what research is done and how easy it is for researchers to identify potential participants for future studies as at that point, you then have to go through the much more complicated effort to identify the patients that are relevant rather than taking the diagnoses they have and validating that they're correct. Which is a lot faster.
Personally, the only reason I don't have an AS diagnosis is that I had nearly all of the schizophrenia spectrum diagnoses other than schizophrenia and at the time I was evaluated, it was not permitted to have any of those and AS. Nor was it permissible to have ADHD and AS. And now, they've shrunk the spectrum in that direction, which effectively makes me too schizophrenic for ASD and too autistic for the schizophrenia spectrum either. And from what I can tell, I'm not the only one. But, being in my 40s, it's really tough to get any of this sorted out as I'm dealing with diagnoses from 3 different sets of DSM revisions and while I do score in the "you should get evaluated for ASD" range of all the relevant validated screenings, it's pretty hard to get a proper evaluation once you've already got a bunch of junk diagnoses that mostly share the property of being commonly misdiagnosed instead of ASD.
Really, we have a misdiagnosis epidemic when it comes to neurodevelopmental conditions, not an over-diagnosis epidemic. There's a massive difference. We get false negatives arguably more often than false positives and most autistic adults remain undiagnosed.
(Score: 2) by JoeMerchant on Saturday January 04, @02:27AM
My brother went on an unsuccessful drug trialing odyssey for about 15 years, and his experience was generally one of: "Gee, we'd like to try this other drug now, you're going to need to go see this doctor to get that Dx so he can write the Rx..." Mirrored for us at a pediatrician's office, our kids were acting very ADHHHD for her and she gave us a referral didn't tell us what it was about just said "go see her, she can help." We checked around before making the appointment, everybody said "oh, yeah, you go see her she'll give you a Ritalin Rx, especially for your kids."
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(Score: 5, Interesting) by Gaaark on Friday January 03, @09:51PM (21 children)
A lot of doctors STILL don't really know autism (especially the older doctors).
Our son was diagnosed just after he turned 2 (they wouldn't do it before then), but we already knew: you put him on his back and look down at him and he'd turn his head away to the side. So you move your head back into his view and he'd move it again to look at something non-facial.
He's now diagnosed as non-verbal severely autistic. For us that means he'll probably be with us for most of our lives. We're going to put him on a waiting list for a group home (some are good, some are HORRIBLE... crap shoot), but the waiting list is, right now, 11 years (we'll just keep deferring him until we need to put him in one).
We're hoping our daughter and son in law will be able to take him in, but the "future is unclear".
So, we put up with behaviours and not sleeping and with him being with us CONSTANTLY. READ MY LIPS.... CONSTANTLY. He is in a day program (while we are at work), now, 4 days a week and we pay out of our own pocket for 3 HOURS a week respite, but i have him home with me one day through the week, then i work and my wife has him at night.
CONSTANT behaviours. CONSTANT wanting food (we might have to put him on Ozempic to try to reduce the need for food...he just obsesses until he's yelling and banging the furniture and biting his hand).
CONSTANT, CONSTANT, CONSTANT.
But... what can you do? You just do.
But yeah.... there's autism ("Oooooh, Sheldon is this funny autistic guy") and there's autism that is at times REALLY HARD. Our positive is that his CP isn't severe enough to put him in a wheelchair... THAT would be the cherry on top. I've seen a lady having to care for a kid with hydrocephalus.... THAT .... man... that is love. Or kids who are total care, unable to do anything for themselves....
So, we deal with constant (wish he could entertain himself once in a while, though), knowing it could be worse.
Hope your son is doing well... I'm just feeling down i guess after re-reading this. :/
--- 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, Informative) by aafcac on Friday January 03, @10:05PM (6 children)
I'm not surprised, it's inherently difficult, but at least you have some idea about what's going on and why. Which is admittedly cold comfort, but I do honestly believe that with all the diagnoses being handed out, things should start to change for the better.
But, that being said, the current status quo where they eliminated AS just because they could hasn't done anybody any favors. It's made folks that should have been diagnosed AS have increased difficulty in getting a diagnosis and it's watered down the definition of autism which can make it harder for people to understand that it is an extreme condition. Even the "mild" variants are still pretty extreme. I'm overall pretty well off, but I struggle to recognize myself in the mirror if I've gotten a hair cut, and sometimes even if I'm just tired, and it remains a mystery as to how to know when I'm thirsty and how much to drink. And, god help me if I need to explain what I'm thinking, because I have absolutely no idea if I'm not specifically using an internal narration to actively choose what I'm writing. Half the time I open my mouth and I've got no idea what's going to come out.
Still, I am fairly fortunate in that on the whole, the pluses do tend to outnumber the minuses, but I think it would have a lot easier if the medical establishment would pull their collective heads out of their posteriors and do the work to figure out where the lines ought to be drawn on the basis of science rather than the prevalence rates they're looking for.
(Score: 5, Interesting) by Gaaark on Friday January 03, @10:19PM (3 children)
OH Yeah!
I used to think i had to be an alien, or that i was just plain weird because i didn't 'GET' humans at all.
Too many 'stupids', too many illogicals. I'd say something and people would look at me weird.
In public school, while everyone else was doing speeches on 'My pet dog Spot', or 'What i did on summer vacation', i was doing Einstein's GR and the Michelson/Morely experiment.
I think they need to assess the individual which, of course, is too expensive.
I'm lucky that i married a woman who's strengths are my weaknesses and vice-versa... she helps me navigate the world around me when it gets... 'complicated'....or when my son starts going 'off the wall' and i just can't cope, she steps in and takes over knowing i can't.
I hope things get easier for you: "May you live long...and prosper"! :)
--- Please remind me if I haven't been civil to you: I'm channeling MDC. I have always been here. ---Gaaark 2.0 --
(Score: 4, Interesting) by JoeMerchant on Saturday January 04, @01:01AM (2 children)
In 4th grade I had a paranoid delusion going on that I was somehow from Mars and they brought me here to torment me, see how I would react to all their provocations that they visited upon me but not each other. In reality, I was just in a class full of rich spoiled brat shitheads with parents, teachers and school administrators too disinterested in my problems to do anything about it when I spoke up like I was told I was supposed to.
When Rain Man came out I saw it in the theater and walked out feeling "O.K. - I get it. I'm not _him_ but that's me, I'm somewhere partway down his rabbit hole vs the rest of the world." I had never heard of Autism before that movie.
> they need to assess the individual which, of course, is too expensive.
Not assessing the individual and just letting them flow through the system is more expensive still. Our son (23 profound autism, barely verbal, eloper) spent 8 months in a group home before we pulled him out (it looked nice during evaluation visits, but in real experience was HORRIBLE) at the end they had him rated to receive funding of $450 per day for his care, over $160K per year.
Everyone is different, we have another son 2 years younger, also profoundly autistic but much more verbal, still not really conversational capable especially with strangers, but almost... He's not an elopement risk (anymore, we hope, last event was about 7 years ago) but he is very much at risk to be taken advantage of / abused by strangers. We fought for both of them to be included in neurotypical classrooms all through school, as well as such therapies as seemed to be making progress (most plateaued after a while) and everything else we could do. I feel that the older son got the short end of that deal, most of the time the schools would resist and delay and push back and maliciously comply and on and on... by the time we got them doing good things for our older son, here comes his younger brother with the same Dx and the meetings were generally very short and along the lines of "I suppose you want all that for him, too?" "Well, duh..." and they'd just roll over and immediately comply. Probably cost them an extra $30K per year, max, when the schools did what we asked, as compared with sticking them in a corner and ignoring them the way they wanted to. We have in-home care support for our older son now, not sure how long the funding will remain at this level but it's $70K per year right now, quite the bargain compared with the $165K the "professionally administered caregivers" were drawing for him. Our younger son is in a special school for mostly Downs but also Autism and others, tuition is around $20K per year and roughly half is covered by the state, half is out of pocket for us, because that's how this particular corner of the insane funding scheme works.
Oh, by the way, we tried to get admission to all kinds of private schools for our older son, 19/20 we tried just said no, and the one that accepted him was incapable of keeping him from leaving the school grounds to go into adjacent neighborhoods, enter peoples' homes and browse their DVD collections. After the 4th such elopement from there (I was actually on school grounds when that one happened, he was running for the fence and I just yelled "STOP" in a clear voice, he complied. Not sure why the preacher was incapable of using a similarly loud voice), we withdrew him and home schooled him for a couple of years. Ultimately, home schooling isn't what either of our children needed, at all. They needed to be with neurotypicals to be able to learn how to act like their neurotypical peers.
Point being: all that money the school systems "saved" over 20 years shortchanging our older son on services, seems to be costing the state up to 2 to 5x that amount per year now that he's aged out of the schools and they're on the hook for his care as an adult. I suppose we could fund similar care out of pocket (as we have on very limited basis from time to time) but of we do that full-time we'll be broke right about when we get so old that we can't do any of it ourselves and if we just surrender him to their care: $165K per year... maybe they could get that down with the use of chemical restraints, which seems to be what they are doing with most of his peers in that system, against all very clear laws to the contrary.
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(Score: 4, Insightful) by Gaaark on Saturday January 04, @02:34PM (1 child)
I feel like i'm half-way between Sheldon and Leonard: not as good with socializing as Leonard and only half as 'weird' as Sheldon.
By 'eloper', you mean runner? THAT can be terrifying on its' own.(Sorry... kept reading and got an answer)Our son blossomed in public school in a 'separate' class with a great teacher and EA's. High school was the exact opposite: it went from "Everything is great" to "He's hitting us". We finally found out (through the Special Olympics grape vine of verbal kids talking to their mothers who talked to my wife) that he was basically being mostly ignored and was not participating in any class events.
Finally the school moved the teacher out (Dog forbid you fire a lousy teacher) and we got an 'Okay' teacher for him.
Short term, they saved money which is all the typical politician cares about.
We need long-term thinkers; we just don't get them.
I'm thinking we need autistic benevolent dictator as a government model: he/she says "For the next 5 years, my plans are to do this as a major goal, with the plan being that in 10-20 years, we will be here. Vote for me and this is what i will do, then give them all power to do it. If they don't or aren't heading in that direction, vote them out. That way, we can get a person who is leading a plan for the future.
Politicians today only plan for the next vote.
--- 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 Saturday January 04, @03:39PM
>We finally found out (through the Special Olympics grape vine of verbal kids talking to their mothers who talked to my wife) that he was basically being mostly ignored and was not participating in any class events.
So much of our lives has been this kind of finding out through back channels what's really going on, and so much of the schools and other institutions is set up to discourage / block us from doing so - to the extent: in 1st grade I went "back to the classroom" to see what was up with a problem they were having with math, the receptionists copied my driver's license, gave me a badge, and said "go right on back" - until the principal informed them that I was "a special parent" and they were to put me on the "oh, you have to make an appointment and we have to let you know what day (six weeks or more in the future) it will be O.K. for you to visit the classroom..."
Now, out of school in the institutional settings, they're required by law to let you visit anytime with or without any prior notice, and they happily comply when you show up, but it's like the system doesn't expect you to do that, it's super weird when you do, like: I visited the day program four times, 100+ clients present, never another family, friend, or other visitor. I signed him out once from there to go for a drive, they practically blew dust off of the sign out notebook, there were no prior entries on the form lines.
The group home did get more visitors. We went roughly once a week. In the 8 months he was there we actually crossed paths with another client's family: once. Looking at the log books one of the other clients had two family visits in 8 months, two other clients had one family visit in the 8 months, and the other two apparently had no outside visits in the 8 months.
When you are present in those settings, they will lie to your face as if they really believe what they are saying. We had a meeting about them wanting to put our son on more drugs, the director said "oh, no, we don't want a bunch of zombies." Walk out into the rooms with the clients, what do you see? About 80/100 zombies staring blankly into space, ignoring the crappy movie playing on the big screen, lots of slack jaws, some visible drooling. When we picked up our son from the group home, he was pretty zombied out - dulled responses, lack of awareness of his surroundings, for about 4 days after we took him home. They say they weren't giving him any other drugs... They say they were keeping him Gluten Free - we facetimed with him for about 5 minutes a night - we saw them handing him snacks with Gluten. They say they weren't giving him the drugs that the Nurse Practitioner wrote them a script for, when we started digging in the insurance records they refilled 6 months of those prescriptions under his account, 12 separate billing and payment records. They say they were never physically restraining him after "the first incident," we have photos of multiple occasions where he had bruises encircling his wrist and upper arm.
These things happen, we understand, in the past I have bruised him myself in my efforts to keep him safe, but through the course of his 8 months there he accumulated more bruising than I recall throughout his prior 22 years of life.
>I'm thinking we need autistic benevolent dictator
Yes, but who? I don't want Elon, even though he seems to want the role.
>Politicians today only plan for the next vote.
At the national level, I don't believe the politicians themselves do anything other than read the scripts they are handed. fElon Rump are "a breath of fresh air" because they actually speak in public like the flawed human beings they are, but they're no more in control than Obama or Reagan were, which is to say: barely any personal influence to speak of.
I have gotten direct personal case help from the offices of Senator Marco Rubio and Rep. Rutherford. That's not from the politicians themselves, that's their office flunky interns executing the duties of their offices. And they were remarkably efficient and effective as compared to continuing to beat my head against the walls of the SSA and USPS, respectively. But, I believe that any US Senator or Representatives' office flunkies would have done the same for their constituents.
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(Score: 3, Interesting) by JoeMerchant on Saturday January 04, @01:13AM (1 child)
Well, I know it's a challenge in many ways, but my observation is that you're more self aware than most neurotypicals, which is actually quite an asset even if it's not the key to blissful happiness.
You're also able to communicate clearly, probably at least above average there - possibly far above, another strong asset for self management and self advocacy to get what you need.
> if the medical establishment would pull their collective heads out of their posteriors and do the work to figure out where the lines ought to be drawn on the basis of science rather than the prevalence rates they're looking for.
I showed this to khallow, he skimmed it for what couldn't have been more than a couple of hours and wrote some jackass "your logical fallacy is..." reply to some cherry picked passages he saw - confirming for the Nth time what I already think of the drivel he writes on here. But I digress, this is an anarchist essay from 1973, I find chapter 1 to be extremely on-target and very well matching what I have observed from inside the shell of the medical industry for the last 30+ years: https://archive.org/details/illich-conviviality/page/8/mode/2up?view=theater [archive.org]
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(Score: 3, Insightful) by Azuma Hazuki on Monday January 06, @02:07AM
Hallow is a deeply miswired individual isn't he? There is something *missing* in there, the something that makes a human a person.
I am "that girl" your mother warned you about...
(Score: 2) by JoeMerchant on Saturday January 04, @01:23AM
>A lot of doctors STILL don't really know autism (especially the older doctors).
I needed a new General Practitioner in a hurry to get clearance for my upcoming cataract surgery back in October, previous one had retired and his replacement was going to intake me as a new patient, waitlist me for months, etc. so, I take the first one closest to home and get this clown. He's a pretty nice old guy, gets me my clearance quickly. A month later, we have just withdrawn our older son from group home care wherein he lost 32lbs, had bruising here and there, some PTSD responses... I got him an appointment with the nice old guy with the ask: "general checkup, get his basic vitals, observe what you can observe" f****ing a***ole and his partner refused to serve him after we had gotten his basic vitals with the nurse "I can't treat him if he can't talk to me, go see somebody else" "well, can you at least record his weight, vitals, basic observations" - he made show like he was doing that, then charted his weight at 172 instead of the 155 the nurse had written down - previous visit that recorded a weight had him at 182.
A lot of doctors, especially the older doctors, are spineless jerks who wouldn't tell a simple factual truth if they thought it might get them involved in anything other than being paid.
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(Score: 3, Informative) by JoeMerchant on Saturday January 04, @02:21AM (9 children)
>We're going to put him on a waiting list for a group home (some are good, some are HORRIBLE... crap shoot), but the waiting list is, right now, 11 years (we'll just keep deferring him until we need to put him in one). We're hoping our daughter and son in law will be able to take him in, but the "future is unclear".
You know, I've never even been curious if SN supports private messaging... if it does, I'd like to know about that now to share some details of our recent, and not so recent, group home experiences for our son.
Long story short: if your daughter and son in law can take him in, this is the way. Don't cripple her life demanding that she must do it, for that is the way to certain rejection or misery if she complies, but if she truly cares for his well being the way you obviously do, in our local experience of group homes (a dozen toured, one trial stay, one 8 month residency) some look better than others, especially on a one hour intro tour, but no group home situation anything like any we have seen will ever be satisfactory for any non-verbal autistic person who is anything like either of our sons.
> we pay out of our own pocket for 3 HOURS a week respite
In Florida, there's the MedWaiver wait list administered by APD https://apd.myflorida.com/ [myflorida.com] motto shown all over the website: APD Cares, because, obviously, their top level administration is very insecure about the fact that they actually don't care anything about the people they serve, they're just there to keep the legislated funding flowing and the expensive lawsuits to a minimum. It sounds like you may be on track to qualify for funding, eventually, maybe sooner than later if you can get a QSI and other quantitative measured data on file in his application. After our group home placement learning experience (what did we learn? Group Homes for non-verbal clients SUCK!) we're on in-home companion / caregiver services that are doing pretty well for him and us, though it's a huge adjustment for both.
>CONSTANT behaviours.
Have you read my plug for affordable compounded generic dextromethorphan / quinidine? Have you tried it? It has been all good for us so far, since maybe 2018, after other meds we tried were more trouble than they were worth. He's still quite challenging, but behavior frequency is way down and tolerance for challenging situations is up a bit too.
>what can you do? You just do.
Everyone is different. Our older son is a very "sensory diet" kind of guy. Being in a car, going places, out of the car walking, seeing stuff in the world, running errands, shopping, several hours a day - that makes the other hours much easier to manage. Most of the time school was sort of almost enough when he was going. The other thing is: when he's had too much, it's time to give him some sensory down-time. In school they'd just let him go sit in the "sensory room" which is basically a bean bag and some christmas lights and various other stuff, but the real thing it is is: distance/insulation from the other sensory stims in the classroom. He used to do O.K. on vacations, but even then we'd have to be ready to put in some "downtime" on demand as his needs arose. Just to over-share with our "anyone in the world who may be reading" audience, other ways the non-verbals communicate include: bed wetting, poop smearing, throwing prepared food in the trash, and our big one: elopement, just leaving the scene out into the world at large. Our biggest issue is that, even as late as age 20 he left when we weren't looking, went down the street and entered a neighbors' house through their unlocked front door. Yeah, in 'Murica that'll get ya shot, and not in the leg neither, they train 'em to shoot to kill to keep the lawsuits short 'n sweet. Anyway, when we get the sensory diet balance right (and by balance, that's usually got a tolerance of +/- 2 to 6 hours a day while you're in the sweet spot, but it's hard to read when you're in the sweet spot, when you're not in the sweet spot and the signals are getting clear you usually have about 30 minutes or less to accommodate his current needs for more or less stimulation before things start escalating...) so when the sensory diet balance is good, he's really easy to work with, follows verbal instructions, will even help with some chores - though that works better when it's his idea than when you're showing him things he could do...
One pattern that we've gotten pretty religious about trying to not repeat is: talking about his care where he can hear us talking about his care. He only speaks a few words at a time, and he doesn't process what he hears in real-time, there's a significant delay for speech processing when he doesn't know what you are about to say, but.... he eventually does understand just about everything that he hears said (in English) around him, and he's really not cool with people talking about what they're doing for him, what his behaviors were, etc. etc. Bringing him into IEP meetings? That's a big nope, he'll find his way out of a locked down special needs school so fast it'll make your head spin if you put him in his IEP meeting room.
>his CP isn't severe enough to put him in a wheelchair... THAT would be the cherry on top.
O.K. - just to get really real about this, first: wherever you are, there's always somebody worse off. Even Christopher Reeve, could have lost facial muscle control - that would have sucked so much worse, and he already basically told 'em to pull the plug after a few years as it was. And there are others who have it better than you, obviously. And this plays in so many dimensions, especially behavioral, cognitive abilities, communication, physical needs, special medical preparations... ever know anybody on a feeding tube for months to years? Yeah.
So, we used to go to an annual special needs camp, at first we were the only autism kids there and they welcomed us and we got to know about each others' varied experiences. Over the years 2007-2018 the number of autistic attendees steadily grew to become about 50%... Others there had a lot of wheelchair conditions. A lot of motorized wheelchairs. The wheelchair care-givers got very frank about behaviors one day: "when it's more than you can take, you can always push 'em into a corner until you're ready to deal with 'em again, and if it's motorized you can switch it off." That's real life, folks. 24-7-365, you do the best you can do and that's all you can do.
🌻🌻🌻 [google.com]
(Score: 3, Insightful) by Gaaark on Saturday January 04, @03:04PM (6 children)
We think they will, but they are trying for kids of their own and that means the chance for severe autism being passed on to their own kids: something that may ham-string them.
Or..... you just can't predict...anything....
Any time we have put him on ANYTHING but natural 'drugs', he has exhibited opposite/bad/dangerous behaviours. There was one (can't remember what it was, now) that was supposed to calm him down (the high school pushed it for him after the "He's hitting us" shit). One drop was supposed to just 'calm' him. Instead it had him spinning in circles and was anything BUT calm... running and spinning...
The BEST thing we ever did for him was put him on the gluten-free diet: we saw no real changes until the 12th month of him being gluten-free. Then we got a brand new kid. One doctor said his gut biome was turning the gluten into an opioid: he was high all the time, regurgitating his food, smelling like vomit all the time, doing dangerous things, running (eloping).... everyday was a heart-attack!
That's our son: we can take him anywhere and he just looks out the window and enjoys the moment. We've driven down to Florida, out to Eastern Canada and never a peep of complaint. He loves history and geography and learning new things.
THIS ^ is the CONSTANT that other people don't think about. Constant worry, constant 'thinking inside and outside the box', constant constant constant constant
THAT! ^
People don't realize that non-verbal doesn't mean stupid: our son is like me in that he doesn't speak much but he LISTENS CONSTANTLY. THAT is how he learns.
Knowing that some people think he's a 'retard' and isn't worth including (high school teacher...are you listening?) upsets him. He wants to learn and be included and 'hits out'/gets upset when left out.
LOL, when my wife and i were first married, we were group home parents for multi-handicapped kids and one of our kids was this little guy that choked on food, so he got put on a feeding tube. The one day the 'bulb' on the end in his stomach popped out! WTF do you do? Hey, just pop it back in.... there you go!
Learned a lot that day!
Yup! People, this may seem mean, cruel, unforgiving.... but it's better than dumping them on "social services"/someone else.
You are so correct. When it is constant, 25-8-366 (day and night, all hours, any hours, the exact hours when you need anything but... ) you do the best you can SO you CAN keep doing. So you don't burn out. So you don't get angry. So you don't break.
You do the best you can do and that's all you can do.
It's been great venting with you. For you and your family.... LIVE LONG AND PROSPER. and just keep 'doing'.
--- Please remind me if I haven't been civil to you: I'm channeling MDC. I have always been here. ---Gaaark 2.0 --
(Score: 4, Insightful) by janrinok on Saturday January 04, @03:39PM (1 child)
My experience is very different to yours. Mine was being the carer to my late wife who suffered from multiple sclerosis. But I can relate to much of what you have both been saying.
I also fully agree with the subject of this comment. You can only try to do the best you can but more importantly, you have also to look after yourself. If the carer can't cope then that is 2 people who will suffer. I am fortunate that I live in a country where there was help not only for my wife but also for me too. I was provided with respite care where my wife went into a care home so that I could recover and rest and make sure that I was ready to pick up the job again when she returned usually after 2 weeks. This would happen 3 or 4 times a year. My wife was in full agreement with it and recognised when I was getting tired and needed a break again.
We are often over-critical of ourselves and feel that we are failing if we cannot do everything that is required. It isn't true, but I don't think that I ever met another carer who hadn't felt that way at some point. Your discussion here will also have helped even perhaps without you realising it. You know that you are not alone, and that others have found different ways of coping with not only their patient but their own inability to be a perfect carer.
More than 3 years have gone by since my wife passed away, and I still think of things that I could have done better, or I realise that I have learned some lessons too late to be of use to me when I needed them. It will always be like that.
You can only do the best that you can do. And if you are doing that then you are NOT failing in any way.
I am not interested in knowing who people are or where they live. My interest starts and stops at our servers.
(Score: 2) by JoeMerchant on Sunday January 05, @12:28AM
The special needs caregivers' camp we attended (caregivees encouraged to attend as well) would get the caregivers alone in a room every year and hammer this message:
You need to take care of yourself first. Mentally, physically, emotionally, spiritually, financially, whatever "ly" you're out of, that's going to hamper, usually cripple, your ability to care for them.
We are always learning lessons too late, it's the nature of life, moreso in the blackout maze of social support services in the US. On the one hand, our son's 8 months in the group home was terrible and if we knew everything we know now we would never have put him there. On the other hand, if we never put him there we couldn't know what we know now. He lost significant weight 187 to 155 lbs, but 155 lbs ins't unhealthy weight overall, he got quite a few bruises - more than any other time in his life, but less than young men who train for some parts of the military I think - certainly less bullet wounds than 23 year olds who see active front line duty. We are going to do our best to protect him from similar situations in the future, but he also now knows what else is out there in his world and that knowledge can't be a bad thing for his future. He never seemed to be really hurting, emotionally, until the day before we pulled him out. I had cataract surgery the next morning, so we sent him back for 21 more hours and got him while I still had my eye patch on the next afternoon. 10 days later he waited patiently in the car with my wife for 3 hours while I had the other eye done.
As bad as we feel for leaving him there, I cannot judge the families of the 100+ others in his same day program. Everyone has their own unique circumstances. That day program killed a 42 year old client by leaving him outside in a van in July, never told us that happened but we put 2+2 together from the local news that we don't watch, but we pulled up the stories later on the internet. Apparently a few other families were at least paying enough attention to also notice. Usually there are no openings available in the homes, but when we pulled our son out that company already had 8 openings advertised as immediately available. Our local system seems to do everything it possibly can to keep clients' families from connecting and talking with each other. I think that's perhaps its greatest flaw of all.
🌻🌻🌻 [google.com]
(Score: 2) by JoeMerchant on Saturday January 04, @11:09PM
>you just can't predict...anything....
ever.
>Any time we have put him on ANYTHING but natural 'drugs'
Yeah, we are pretty far out in the "anti drug" side of things (we, mom and dad, are in the neighborhood of 60 years old, we don't take any meds - I take a Vit B supplement every other day... when I got my cataract surgery the nurse mentioned how rare that is in their practice, I pushed "how rare?" and they talked it over among the staff and decided it's about one patient in 30 - for cataract surgery - who's not on any meds these days), but we also try to remain rational and not do things like put ourselves in a situation where we're going to have to turn him over to other people who WILL put him on drugs of THEIR choice, so somewhere in mid-puberty we did try a couple, rejected one as bad, relegated the next (THC, that's sort of natural, right?) to "as needed" status which has slowed from once a month or less to almost three years without a dose at this stage, but... while we were still managing with once every 4-12 weeks chill pills, our general practitioner told us about this cough syrup application that was really working well for another family like ours he works with, so we tried. In all probability, if your parents gave you cough syrup as a child dextromethorphan was the active ingredient.
They kept tally mark counts of "target behaviors" for him at school, he was running 5-6 tick marks a day for all kinds of things, mostly attempting to leave the classroom - rarely but still too often succeeding. He crossed the street to an apartment complex once - just as they were catching up to him he was knocking on a residence door and said "Knock, knock, who's there?"... take the laughs where you can get them. Another time he bit the campus police officer, who didn't freak out about it or process any kind of report, though he did ask his name and our son apparently learned from somewhere to give a fake name when you might be in trouble, he rattled off some plausible sounding name of noone we or the school knows... So, anyway... we start the pills, but don't tell the school just to see what their naive observations are. At the next IEP meeting they were all beaming with pride: "looks like our behavior strategies are starting to pay off" (after over two years at the school...) Tick marks decreased from 5-6 per day to 1-2 per week. We told them "really hate to tell you now, but you probably should know, we started this new med pretty much the day that the behaviors stopped..." His 1:1 aide commented "I really couldn't tell, except for the lack of behaviors, he's still him, just not running off all the time." YMMV, I won't advocate for it anymore than to say: if you're really at wits' end and need to try something, it's something you can try instead before trying something that's likely to be worse...
>The BEST thing we ever did for him was put him on the gluten-free diet
Ditto. Our older (more severe) went GF in 2004 just before he turned 3 and it made a huge positive difference back then. It also made a huge negative difference when he would have "gluten infractions" - once when he was about 8 while travelling in Alabama we really couldn't find much of anything GF in the grocery so we gave him some nice pancakes for breakfast. 100% confirmed with that experiment: GF is IMPORTANT for him. Mom and dad do benefit from GF, but it's more of a minor intolerance thing for us, it was HUGE for him and I think it's still a bigger deal than for us. His younger brother, still profoundly autistic, doesn't matter GF or not GF. Lucky genetics I suppose. Through the years, schools and later the group home didn't take GF seriously and his behavior would see-saw up and down. I'm sure not all of his behavior is directly correlated to GF/not GF, but a lot of it is. Basically, he's still in a tough spot when he's GF, but it's so much worse when he's not, so of course unpleasant behaviors ramp up. The group home claimed they would faithfully administer a 100% GF diet for him "oh, yeah, we've done that before, not a problem." Returned him home one evening and staff handed him a slice of apple pie, I asked "is that pie gluten free?" "Oh, I don't know..." talk about the worst of all possible answers. Don't know, don't care. Same staff asked "have you considered putting him on 'control meds'?" Like I said, we are 100% done with that scene.
> the CONSTANT that other people don't think about.
After pulling him from the group home, our APD coordinator was hitting me with "well, if he's not so bad when you take him out once in a while and you don't even need sedative drugs, why do you need help?" That's what I tried to relate to him, the CONSTANT as you say 25-8-366 vigilance, always being ready to drop whatever you are engaged with at a second's notice and fully engage with whatever needs to happen for him for the next minute, 30 minutes, 3 hours - you never know. You might go for a week or two without having to do much of anything unexpected, that's how it was when he left and invaded the neighbor's house 3 years back.
> non-verbal doesn't mean stupid
Our older, more severe, son is a better reader than the younger, more talkative one. He probably reads around a 10th grade level - if he mispronounces a word you can tell him once how it should be and he'll remember that from then on. He reads signs in parks, books, whatever you put in front of him, out loud. 1st grade he earned the "Best reader in morning meeting" award in a mixed age K-2 classroom. People often doubt he comprehends what he reads, but he'll eavesdrop on conversations across the room you might not think he can hear, and he'll say two or three words that prove not only did he hear what was being said, but he understands it at a deeper level too. Not on demand, not all the time, certainly not when you really want him to, but consistently several times a year over the years he has demonstrated comprehension like that.
>So you don't burn out. So you don't get angry. So you don't break.
>You do the best you can do and that's all you can do.
Exactly.
>It's been great venting with you. For you and your family.... LIVE LONG AND PROSPER.
And you as well.
🌻🌻🌻 [google.com]
(Score: 2, Insightful) by Anonymous Coward on Sunday January 05, @04:53AM (2 children)
Don't encourage this or even suggest it. Wait for them to ask if they can take him, maybe for a holiday. If after he returns, they never mention taking him again then they don't want the burden.
If you push it, the sense of obligation might make them take him, but the hidden resentment and the extra burden will almost certainly wreck their marriage. The sister might stand it for a while but the husband is going to wake up one day, realize he has no life other than caring for his brother-in-law and, depending on temperament, either walk out the door or blow his brains out. Yeah, it sucks, but your daughter and her husband are entitled to a life too.
I work in a related field and I have lost count of the number of biological parents who split up because they cannot handle the long term stress of that level of care. It's not uncommon for a parent to just walk away (and it's not always dad, a significant portion of the time it is mom). Relatives by marriage have another, less opprobrious "out". If the marriage breaks up no-one is going to expect them to continue. The subconscious can be a tricky bastard like that.
(Score: 2) by Gaaark on Sunday January 05, @07:26PM (1 child)
We're FULLY aware of this, lol.
We've talked about it and THEY suggested they could take him, but they have busy lives too, and they haven't had him for a 'sleep-over' yet, so we're aware it may not happen.
If they end up not being able to have kids, they'll probably take him: if they do, .....the future is unclear, lol.
That's why we're looking into putting him onto a wait list: see how long WE can look after him, then see where they are at.
I know... you are right in that our "daughter and her husband are entitled to a life too."
Thing is, it may come to a point where they see how his care is and if it is not good, then THEY pull him out. Or they take him some days, but he stays there other days, or some such.
Thank you for the comment though: it DID make me think.
--- 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 Sunday January 05, @10:28PM
At the risk of repeating myself too much:
None of the group homes around here will, in practice, deal with non verbal clients without putting them on sedative meds, and they appear to just up the dosage until the clients are "easy to handle" meaning: ignore. They don't care if they end up in diapers, or zombied out, they basically want to run a warehouse.
Don't take the tours at face value, visit in person, unannounced, randomly and frequently. If they act annoyed about that: red flag. If they frequently skip scheduled day program: red flag. If your son is showing up with bruises: escalate to the next level above the highest one you have spoken with before.
If they aren't making progress on problem issues in the space of weeks, be ready to pull him out.
If you aren't ready to demand the treatment he deserves, get comfortable with him being treated like everyone else you see in the program. Also realize that they will stonewall about what drugs the other clients are on.
🌻🌻🌻 [google.com]
(Score: 2) by janrinok on Saturday January 04, @03:41PM (1 child)
The site does not support PMs on the main site but it does on IRC. Maybe give it a try?
I am not interested in knowing who people are or where they live. My interest starts and stops at our servers.
(Score: 2) by JoeMerchant on Saturday January 04, @07:41PM
Thanks, when I've got a minute to check - on the off chance that Gaark might also be there.
🌻🌻🌻 [google.com]
(Score: 3, Interesting) by corey on Sunday January 05, @03:37AM (2 children)
Damn, Gaaark. Thanks for sharing. I’m not sure what to say but I wanted to express my admiration of you and your wife and that you are definitely a few points higher in Superhuman than I. As they say, what doesn’t kill you makes you stronger. Try to be proud of what you have achieved and continue to. Kudos and I hope the future gets easier.
I’ve got two kids, not on the spectrum (but one is pretty close I reckon), and the time and effort raising them is sufficient for me - I don’t want any more.
(Score: 2) by Gaaark on Sunday January 05, @07:41PM (1 child)
Shit, corey ... i just put my son on sale! 8)
--- 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 corey on Tuesday January 07, @12:01AM
:D
I am on a mailing list for Peter Attia’s podcast about health and longevity and the latest episode is on the three A’s (autism, ADHD, anxiety) which some here might find interesting.
https://peterattiamd.com/trennasutcliffe/ [peterattiamd.com]
#330 – Autism, ADHD, and Anxiety: Understanding the rise in autism and a multidisciplinary approach to diagnosis and treatment of each condition in children | Trenna Sutcliffe, M.D.
(Score: 2) by mcgrew on Sunday January 05, @08:18PM (3 children)
While putting the big numbers on "the spectrum" can get it attention as a whole...
Whoever wrote the article is woefully short of math skills. 61 million out of eight BILLION is akin to a rounding error. There are 131 times as many normals as autistic after the math. We ass burgers are rare, those with disabilities from it are far more rare (my oldest daughter is one).
A Russian operative has infiltrated the highest level of our government. Where's Joe McCarthy when we need him?
(Score: 2) by JoeMerchant on Sunday January 05, @09:09PM (2 children)
Good catch on the globally statement, going with a 1/50 prevalence rate, that would be a population of about 3 billion. Either the other 5 billion humans don't get screened, or there are much lower incidence rates "out there" - as always, probably a combination of both.
🌻🌻🌻 [google.com]
(Score: 2) by mcgrew on Monday January 06, @05:22PM (1 child)
Or an incompetent reporter. Competence has gone out of style, nobody is willing to pay for it these days.
A Russian operative has infiltrated the highest level of our government. Where's Joe McCarthy when we need him?
(Score: 3, Insightful) by JoeMerchant on Monday January 06, @09:10PM
Well, the number came from somewhere, and while I wouldn't be shocked if "out of the reporter's ass" is the reality, I think it's much more likely he copied it off some table somewhere that had all kinds of relevant information in the notes about the tested population, criteria of the test, age of the data, etc. etc. but, doing his doody to make the information smear accessible to his readers, the reporter just stuck it in the article and made the otherwise potentially interesting number completely meaningless.
🌻🌻🌻 [google.com]
(Score: 4, Interesting) by corey on Friday January 03, @10:11PM (5 children)
What I’d like to know (and maybe it’s because I’m ignorant on this) is, is autism prevalence a new phenomenon (as in much more people with it compared to decades ago), or have our diagnosis standards changed? Two of my neighbours have diagnosed autistic kids. When I was a kid in the 80s, nobody had it, I’d not heard of it until I was an adult. Now, there were crazy misbehaved kids I knew, who were later diagnosed with ADD (ADHD wasn’t invented yet) and given Ritalin. But even then, it was mostly unknown and rare.
(Score: 5, Informative) by aafcac on Friday January 03, @10:19PM (2 children)
The standards have changed several times. It was added as a diagnosis in 1980 with additional diagnoses being added in the mid-90s and the last major set of changes were in 2013. The problem being that there was a massive expansion of possibilities in the mid-90s then in 2013 they collapsed nearly all of the diagnoses to just autism spectrum disorder which causes a few headaches in terms of it being this all encompassing diagnosis and if you're not included there may not be an appropriate alternative diagnosis to give the patient. There is also Social Pragmatic Communication Disorder which is related, but not quite the same and does not include some of the hallmarks of autism.
The end result is that there's a bunch of awareness that wasn't there decades ago, an expanded set of criteria versus the extremely limited ones in the early '80s and a much greater push to not just leave students in the lurch. Folks like me that managed well enough to just get some special ed for reading and speech therapy back in the '80s would likely get some sort of a diagnosis now. But, back then there was literally no diagnosis available so the schools, parents and doctors generally weren't keeping records of things that could contribute to a diagnosis or no diagnosis like they would be expected to now. The result is that while there has been a significant expansion in diagnoses that have been handed out, there's little reason to think there's been any sort of significant increase in the number of autistic people out there. It's just that we're less likely to label such people as being stupid, lazy, brain-addled or similar pejoratives now versus back then.
(Score: 3, Informative) by corey on Saturday January 04, @01:15AM
Thanks aafcac. That’s interesting and what I suspected. Society has evolved quite a bit. When I was a kid, we were treated as down a few rungs without much say in things nor space to express much emotion. I remember my parents talking about other kids who were probably in the spectrum now, as being “little shits” or something, as you elude to. Parents blamed other parents for “bad” behaved kids and kids teased other kids who were slightly different or struggled with keeping up in school.
(Score: 2) by JoeMerchant on Sunday January 05, @09:44PM
In the 80s in Florida, a "special" diagnosis got you shipped off to the portable classroom away from the normal kids, literally hidden from view. Downs was obvious, anything else got lumped in with them.
I'm sure they claimed to be giving therapy and special attention, but in reality they were mostly being kept out of the way and ignored.
🌻🌻🌻 [google.com]
(Score: 2) by https on Saturday January 04, @06:11PM
Try both for a few minutes and see what falls out.
Offended and laughing about it.
(Score: 2) by Beryllium Sphere (r) on Monday January 06, @05:08AM
Nobody had it before 1980? There was one in my family in the 60s.
There's a visibility problem. The ones at the far end of the spectrum you wouldn't have run into because they were institutionalized.