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carlos55
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07 Feb 2020, 3:22 pm

Amity wrote:
I just cant imagine doing this to a child, unless it could be life saving, but I guess it's yet another way to cause harm to ASD children. I wonder if these are the type of parents that would react similarly to other more visible forms of special needs in their child.


I think some people are getting a bit carried away with this "dangerous" drug accusation. Anyone would think this is the first drug ever given to children. Like all drugs they have to go through rigorous safety testing (no one wants to be sued!) only then are trials given. Then the trials themselves are examined and only after passing all that do they get licenced while under scrutiny.

ASPartOfMe wrote:
I do not fully understand this but the belief that your kid has a lifelong condition wherby, they won’t make eye contact normally, communicate normally, get a job, get married etc is the worst thing imaginable.


Written like its a minor thing not being able to be independent, get a job and deal with the outside world. They are seriously major handicaps that have serious life shortening / poor life outcome ramifications, especially outside our cosy western support systems.

Even here in US /Europe it means a life of extreme poverty, or crappy jobs, poor dignity, loneliness, staying a virgin for life, high suicide rate, welfare, dependency, burden on family members, increased danger from accidents & attacks, being taken advantage of by preditors of all sorts and a worsening of existing mental conditions from all this stress.

Not something minor


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07 Feb 2020, 7:31 pm

Amity wrote:
ASPartOfMe wrote:
I have seen this too much for too long not to believe it. Desperation makes people do desperate things. How is this any different than bleach enemas or chelation etc.? Since I am not NT nor have been a parent I do not fully understand this but the belief that your kid has a lifelong condition wherby, they won’t make eye contact normally, communicate normally, get a job, get married etc is the worst thing imaginable. If the child has a bunch of comorbids and needs 24/7 maintenance all the more so. They know it is risky, it is an experiment but the mindset is I have got to try anything to make it stop.

I just cant imagine doing this to a child, unless it could be life saving, but I guess it's yet another way to cause harm to ASD children. I wonder if these are the type of parents that would react similarly to other more visible forms of special needs in their child.

To them it is "rescuing" their real cute normal child that is in there somewhere, metaphorically kidnapped by autism. When your child has been kidnapped anything goes

carlos55 wrote:
Amity wrote:
I just cant imagine doing this to a child, unless it could be life saving, but I guess it's yet another way to cause harm to ASD children. I wonder if these are the type of parents that would react similarly to other more visible forms of special needs in their child.


I think some people are getting a bit carried away with this "dangerous" drug accusation. Anyone would think this is the first drug ever given to children. Like all drugs they have to go through rigorous safety testing (no one wants to be sued!) only then are trials given. Then the trials themselves are examined and only after passing all that do they get licenced while under scrutiny.

There are drugs that are fast tracked if the situation seems desperate enough. From anecdotal evidence(what I have read) short cuts are accepted for autism research that are not accepted for other conditions.

ASPartOfMe wrote:
I do not fully understand this but the belief that your kid has a lifelong condition wherby, they won’t make eye contact normally, communicate normally, get a job, get married etc is the worst thing imaginable.


carlos55 wrote:
Written like its a minor thing not being able to be independent, get a job and deal with the outside world. They are seriously major handicaps that have serious life shortening / poor life outcome ramifications, especially outside our cosy western support systems.

Even here in US /Europe it means a life of extreme poverty, or crappy jobs, poor dignity, loneliness, staying a virgin for life, high suicide rate, welfare, dependency, burden on family members, increased danger from accidents & attacks, being taken advantage of by preditors of all sorts and a worsening of existing mental conditions from all this stress.

Not something minor

It is not a minor thing in part due to western value judgements. Other societies run without employment as we know and extended families live together and eye contact is viewed as rude.

And even here it is not the worst thing imaginable. I can think of worse things dying from terminal cancer, living in a war zone such as Syria.


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08 Feb 2020, 2:16 am

carlos55 wrote:
Amity wrote:
I just cant imagine doing this to a child, unless it could be life saving, but I guess it's yet another way to cause harm to ASD children. I wonder if these are the type of parents that would react similarly to other more visible forms of special needs in their child.


I think some people are getting a bit carried away with this "dangerous" drug accusation. Anyone would think this is the first drug ever given to children. Like all drugs they have to go through rigorous safety testing (no one wants to be sued!) only then are trials given. Then the trials themselves are examined and only after passing all that do they get licenced while under scrutiny.

ASPartOfMe wrote:
I do not fully understand this but the belief that your kid has a lifelong condition wherby, they won’t make eye contact normally, communicate normally, get a job, get married etc is the worst thing imaginable.


Written like its a minor thing not being able to be independent, get a job and deal with the outside world. They are seriously major handicaps that have serious life shortening / poor life outcome ramifications, especially outside our cosy western support systems.

Even here in US /Europe it means a life of extreme poverty, or crappy jobs, poor dignity, loneliness, staying a virgin for life, high suicide rate, welfare, dependency, burden on family members, increased danger from accidents & attacks, being taken advantage of by preditors of all sorts and a worsening of existing mental conditions from all this stress.

Not something minor


So the long term impact on the developing brain is known?

As you rightly point out ASD people are exposed to disability related high levels of stress. It's a standard experience for many if not most.
The risks are too high for me. At best extra emphasis on socializing will result in prolonged tolerable stress levels, if this drug doesnt work, at worst toxic stress levels. The long term effects of this have been widely studied... long term health implications are likely to worsen as there is already a baseline stress level.

Where will the parents be when their grown child develops these stress related conditions later in life?

I would stick with animal therapy.



Last edited by Amity on 08 Feb 2020, 3:24 am, edited 1 time in total.

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08 Feb 2020, 2:25 am

ASPartOfMe wrote:
Amity wrote:
ASPartOfMe wrote:
I have seen this too much for too long not to believe it. Desperation makes people do desperate things. How is this any different than bleach enemas or chelation etc.? Since I am not NT nor have been a parent I do not fully understand this but the belief that your kid has a lifelong condition wherby, they won’t make eye contact normally, communicate normally, get a job, get married etc is the worst thing imaginable. If the child has a bunch of comorbids and needs 24/7 maintenance all the more so. They know it is risky, it is an experiment but the mindset is I have got to try anything to make it stop.


ASPartOfMe wrote:
I do not fully understand this but the belief that your kid has a lifelong condition wherby, they won’t make eye contact normally, communicate normally, get a job, get married etc is the worst thing imaginable.

I guess just about anyone can have children. I remember a Louis Theroux episode on ASD in America, there was one set of parents that I'm reminded of as I read your response.



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08 Feb 2020, 11:41 am

ASPartOfMe wrote:
It is not a minor thing in part due to western value judgements. Other societies run without employment as we know and extended families live together and eye contact is viewed as rude.


I appreciate the name of the site is "wrong planet"

But here on earth we all have to get money from somewhere to live / buy food etc, usually via a job or if your autistic usually a "crappy job" , or if your lucky get welfare and a life of povety, often in a bad neighbourhood because its all you can afford.

Unless of course someone is an Australian aborigine living in the bush.

A society without employment sounds great fun in theory, if only we could get someone else to run the country and pay our welfare / health care bills.

Maybe you could put the idea to your Jerome Powell. :D


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08 Feb 2020, 12:51 pm

carlos55 wrote:
ASPartOfMe wrote:
It is not a minor thing in part due to western value judgements. Other societies run without employment as we know and extended families live together and eye contact is viewed as rude.


I appreciate the name of the site is "wrong planet"

But here on earth we all have to get money from somewhere to live / buy food etc, usually via a job or if your autistic usually a "crappy job" , or if your lucky get welfare and a life of povety, often in a bad neighbourhood because its all you can afford.

Unless of course someone is an Australian aborigine living in the bush.

A society without employment sounds great fun in theory, if only we could get someone else to run the country and pay our welfare / health care bills.

Maybe you could put the idea to your Jerome Powell. :D

I meant to say employment as we know it. It should be noted that in a society more accepting of autistic traits employment and good employment would be easier to come by for some.

Off topic: I hate the name wrong planet. I find it by definition dehumanizing. I am the outlier here in that regard. Last year and shortly after I joined here in 2013 I did a poll about should the name be changed. The results were OVERWHELMINGLY to keep the name. Some were offended by the very idea. I always have the option to leave but even though I am offended by the name I am not going to be SJW about it and quit Wrong Planet because I understand the purpose of the name is anything but to be offensive, and I do understand the sentiment for obvious reasons.


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08 Feb 2020, 1:34 pm

carlos55 wrote:
Maybe it will work maybe it won’t, personally I’m not a great fan of lifelong pill popping, I prefer the potential idea of a permanent solution such as gene editing

Given that your brain is already fully formed, it's unlikely that gene editing would do your brain much good, and more likely would be harmful.

It seems to me that gene editing does perhaps have good potential as a way to halt the progress of degenerative autism-like conditions such as Rett syndrome. In that case, it might be worth the risks.

But I would be very wary of the idea that it could improve the functioning of any part of an already-formed brain without very nasty side effects of one kind or another.


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08 Feb 2020, 2:25 pm

Anyhow, the whole idea of a pill whose primary purpose is to improve social skills just strikes me as a bit wacky.

The pill is said to work as follows:

Quote:
“It’s regulating hormones in our brain that have to do with how we perceive the social world, whether we understand social cues, how we relate to other people, and how we develop close bonds and relationships,” said Dr. Evdokia Anagnostou, the study’s lead researcher at Toronto’s Holland-Bloorview Kids Rehabilitation Hospital.


But our social difficulties are caused by many different underlying neurological issues, the exact set of neurological issues varying widely from one autistic person to another. For example, for some of us, social difficulties are caused to a large degree by sensory processing issues. For others, social difficulties are caused to a large degree by attention-focus issues. The above-mentioned "hormones" may be at least part of the problem for at least some of us, but probably not all of us, and I would suspect that they're probably not the sole or main problem for most of us.

Perhaps this pill works very well on quasi-autistic "mouse models," but mice socialize in ways very different from the ways that humans socialize. For example: For Mice, the Smell of Urine Is Sexy.

To me it makes sense to develop medications to target specific, relatively simple underlying neurological issues. Our social difficulties, on the other hand, are a complex indirect effect of the interplay of various underlying neurological issues.

So it seems to me unlikely that any pill will ever be a magic bullet that solves all or most of our social difficulties, although a pill targeted at a specific neurological issue, e.g. attention difficulties, may also help some of us on a social level too.


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08 Feb 2020, 2:54 pm

mona wrote:
Anyhow, the whole idea of a pill whose primary purpose is to improve social skills just strikes me as a bit wacky.

The pill is said to work as follows:

Quote:
“It’s regulating hormones in our brain that have to do with how we perceive the social world, whether we understand social cues, how we relate to other people, and how we develop close bonds and relationships,” said Dr. Evdokia Anagnostou, the study’s lead researcher at Toronto’s Holland-Bloorview Kids Rehabilitation Hospital.


But our social difficulties are caused by many different underlying neurological issues, the exact set of neurological issues varying widely from one autistic person to another. For example, for some of us, social difficulties are caused to a large degree by sensory processing issues. For others, social difficulties are caused to a large degree by attention-focus issues. The above-mentioned "hormones" may be at least part of the problem for at least some of us, but probably not all of us, and I would suspect that they're probably not the sole or main problem for most of us.

Perhaps this pill works very well on quasi-autistic "mouse models," but mice socialize in ways very different from the ways that humans socialize. For example: For Mice, the Smell of Urine Is Sexy.

To me it makes sense to develop medications to target specific, relatively simple underlying neurological issues. Our social difficulties, on the other hand, are a complex indirect effect of the interplay of various underlying neurological issues.

So it seems to me unlikely that any pill will ever be a magic bullet that solves all or most of our social difficulties, although a pill targeted at a specific neurological issue, e.g. attention difficulties, may also help some of us on a social level too.


I can only presume they kind of know what there`re doing as they wont want to be sued, I said I can see it potentially maybe building the social neural connections in young children`s brains to encourage them to socialise. I cant see it being effective for adults outside of being a party pill for NT`s

I agree a pill that targets specific neurological issues would be more better. They are however developing new treatments to target specific genes, the future of autism treatments will be via personalised medicine.

We`re still in very early days of gene research and only about 10 -15 years or so in with serious autism research (new serious interest caused by rise in diagnosis) they have hardly covered RNA yet also, I’m confident within 20 years or so they`ll be new treatments available for autism, some autism`s may be cured entirely, others unfortunately outside of my lifetime. 8)

https://www.youtube.com/watch?v=hjeBM95Nft0

https://www.youtube.com/watch?v=tDJpE9kVF2I


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08 Feb 2020, 3:12 pm

Mona Pereth wrote:
Perhaps this pill works very well on quasi-autistic "mouse models," but mice socialize in ways very different from the ways that humans socialize. For example: For Mice, the Smell of Urine Is Sexy.

To me it makes sense to develop medications to target specific, relatively simple underlying neurological issues. Our social difficulties, on the other hand, are a complex indirect effect of the interplay of various underlying neurological issues.

This is the other thing that's hillarious - a bunch of people who probably aren't neurotypical telling us what neurotypical is and that it seems to be making mice behave in a more neurotypical fashion thus it must be good for autistic brains.

It's just game theory. it seems like once you understand game theory you can either take it or leave it, and if it's not your bag then you'll always - forever - be different no matter what your social skills become nor what bell might make you salivate. In fact I'd have to guess that any NT's who no longer see game theory as the high water mark and start putting secular humanism or some type of intellectual/philosophic model out ahead of game theory will run into most of the same social problems eventually because they'll be off-script, off-base, etc..

If we're supposed to be dominating each other into species extinction then this pill should help speed up the process and then that's a great thing. That then asks - is there a 'should' in nature and if so what is it? The only 'should' I can think of is that our actions be consistent with our goals. So far in looking at secular humanism it seems very few people believe in it that give lip service to it, a bit like 'I want it for me but I want to play game theory with everyone else'. If we can be honest that we just want Game of Thrones or Spartacus Blood and Sand then that's fine, otherwise people who really want something else may need to find a way of staking out their territory and trying to elevate principles that they'd want to live by.


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08 Feb 2020, 7:30 pm

Mona Pereth wrote:
Anyhow, the whole idea of a pill whose primary purpose is to improve social skills just strikes me as a bit wacky.
.....

So it seems to me unlikely that any pill will ever be a magic bullet that solves all or most of our social difficulties, although a pill targeted at a specific neurological issue, e.g. attention difficulties, may also help some of us on a social level too.

From my own experience, greater mental processing and bigger mental capacity spaces IS equals to better executive functions. Which does lead to higher social understanding and learning on top of being able to be in control of emotions and be productive.

So I can personally verify and attest to this logic.

The sensory part tho? Depends on the personal tolerance, I happened to have a good amount of it. Lack of filters became an advantage than a mental processing eating distraction that leads to overwhelm and confusion because one still have enough room to function.


I do no need social motivation and behavioral compulsions, when I already have the skills and intention to accommodate others stuck underneath the dysfunction that plainly refuses to execute what I intend to think and act as.


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09 Feb 2020, 5:21 am

carlos55 wrote:
I can only presume they kind of know what there`re doing as they wont want to be sued

Any lawsuits would most likely happen decades down the road, after the kids have grown up. Most corporate executives don't think that far ahead.

In the meantime, if the pill succeeds in making at least some little autistic kids smile at their parents more often and/or become more motivated to try to play with other kids, their parents will likely just be thrilled and not ask any further questions.

What could possibly be wrong with such a pill? See my next message, below for one example.


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09 Feb 2020, 5:26 am

Edna3362 wrote:
Just social? Social behaviors? Really? :lol:

Nothing about internal regulations; sensory, emotional or otherwise that would make one more functional than overwhelmed or misinterpreted? Just messing off the reward system for socializing?

Nothing related to specific processes that may be relevant to learning disabilities and memory?
Nothing about the potentials of self-improvement and care, of daily living and possible independence?
Nothing about having the processing power to take unfiltered sensory systems into something less debilitating, nor grant sensory systems that would level an autistic the same sensory reality to most NTs?
Nothing about fixing speech and language issues related to physical (dyspraxia) or something more verbal in nature (aphasia)?
Nothing about the adult's past traumas, nor the children's possible sensitivity that may lead into trauma? One knew that just being social won't prevent these things, yes?

Exactly. And all of the things you mentioned above affect our social abilities too.

An attempt to treat just our social difficulties and nothing else, by medical means, is not just putting the cart before the horse; it's like an attempt to move the cart by changing what kind of hay is fed to the horse, all the while ignoring the entire question of where the horse is physically located relative to the cart.

Judging by the description of what this pill is supposed to do, I suspect that it might cause some autistic children to become somewhat more extraverted and hence "more social." But that, by itself, isn't going to solve their social difficulties. On the contrary, it may cause them to be more frustrated, hence more traumatized, by their inability to fit in with their peers.

It is already known, for example, that autistic girls tend to be more extraverted and hence "more social" than autistic boys. But the result is to motivate these girls to mask more, which is now known not to be at all good for their mental health.

I personally feel very lucky to have experienced a more introverted, more typically male type of autism in my childhood. Thus I was spared many of the kinds of hell that I've read about in many female autism autobiographies that I've read these past couple of years (both here on Wrong Planet and on various blogs), and that I've heard in the women's support group that I attend.

That's one reason why the idea of a pill to make kids more social really creeps me out.

(I eventually became a bit more extraverted by age 20 or so, by which time I realized, fortunately, that the only way for me to make friends was to seek out fellow oddballs.)

In my opinion, medications for autistic people should focus not on trying to make us more social, but rather on alleviating whichever of our underlying neurological issues causes us the most grief in and of itself. Chances are, doing that will likely alleviate some of our social difficulties too.


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09 Feb 2020, 6:45 am

:P i

warrier120 wrote:
What these researchers don't realize is that social skills are learned. The drug only makes socializing more rewarding to autistic people, but it does nothing to actually help them socialize better with others. You would have to learn that elsewhere.

That is true, however feeling play a big role If you dont feel rewarded you tend to seem uninterested unemotional, like a liar a contradiction every word you say even if learned and studied every day. Also feeling rewarded is said to improve memory which is a very huge problem .ex telling someone you love them and not feeling rewarded you will seem disingenuous at the very least cold uncaring


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09 Feb 2020, 1:00 pm

Interesting subject. Apparently this research has been underway for quite a while. They were looking for candidates for clinical trials in 2013 for a study called "The Role of Vasopressin in the Social Deficits of Autism". The study description read:

Researchers at the Stanford University School of Medicine are seeking participants for a study examining the effectiveness of vasopressin, a neuropeptide, in treating children with autism spectrum disorder. Difficulty with social interactions is characteristic of people with autism, who often have problems interpreting facial expressions or maintaining eye contact while talking with someone. There are currently no effective medicines available to treat social problems in individuals with autism. Neuropeptides, such as vasopressin and oxytocin, are molecules used by neurons in the brain to communicate with one another. Vasopressin is closely related to oxytocin, which is currently being tested as a treatment for autism, and has been shown to enhance social functioning in animals. Animal studies have shown that when the proper functioning of vasopressin is experimentally altered, animals develop a variety of social deficits, including impaired memory for peers and a reduced interest in social interaction. Researchers found that when vasopressin was administered to mice with a genetically induced form of autism, their social functioning improved. Vasopressin is already approved by the Food and Drug Administration for use in humans, and has proved to be a successful treatment for some common pediatric conditions, including bedwetting. Similar to oxytocin, it also has been shown to improve social cognition and memory in people who do not have autism. The study will last four weeks for each participant. Participants will receive either vasopressin or a placebo nasal spray.

So this approach looks similar to using oxytocin. Both are administered by nasal spray and both are neuropeptides. I tried oxytocin. I had a bottle shipped in from a lab in China and tested it on myself. Didn't notice much of an effect in my case. But I am a poor candidate, because I have learned to shed stress very efficiently.

To put this approach in my own words -
Aspies experience significant levels of stress during our lives. Many times that of the average NTs. So much so that Stress should almost be our middle name. This stress energy (hormones) accumulates and is stored in our nervous system and muscles unless we learn effective ways of shedding stress. Most NTs have learned natural means for shedding this stress energy. When a person accumulates too much stress it can led the body into a state of distress. Just as a threat can trigger the body to release a cascade of hormones that prepare the body to defend itself from the threat. The body also uses a cascade of hormones to tell the body that the danger is over and to cool down. But in a distressed state, the body has used up its stores of these hormones and is no longer able to cool down. As a result, Aspies can experience panic attacks or a host of mental problems over time.

So the approach is to supply the body with these hormones that are essential for a cool down process to work properly. So supplementing the body with specific neuropeptides is restoring a deficiency in the body, just like vitamin supplements can supply the body with essential vitamins when there is a deficiency.


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22 Feb 2020, 10:09 am

Cloudman wrote:
:P i
warrier120 wrote:
What these researchers don't realize is that social skills are learned. The drug only makes socializing more rewarding to autistic people, but it does nothing to actually help them socialize better with others. You would have to learn that elsewhere.

That is true, however feeling play a big role If you dont feel rewarded you tend to seem uninterested unemotional, like a liar a contradiction every word you say even if learned and studied every day. Also feeling rewarded is said to improve memory which is a very huge problem .ex telling someone you love them and not feeling rewarded you will seem disingenuous at the very least cold uncaring

All of that is true. Nevertheless, it seems to me that for the vast majority of autistic people, a lack of social motivation is not the primary cause of social difficulties. So it seems unlikely that the medication would do much good for most of us.


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