Lets say you think you have a cure... for ANYTHING

[Au Naturel]

You need to do a randomized controlled trial (RCT) A scientific journal will have several experts in the field review it and see if it merits further attention. If everything looks good, they'll publish. And then it needs to be confirmed by others doing a similar study. At this point, your hypothesis has been tested and may be accepted as a theory. A theory is just a hypothesis that has been tested enough to have some confidence in it.

Good studies use good experimental design. Large sample populations so as to blend out statistical anomalies while at the same time having a good chance of catching low probability events. (They used tens of thousands for the COVID vaccines.) Half get the "cure" (or vaccination) being tested and half get a placebo. Randomized trials - who gets the substance being tested and who gets the placebo are randomized. Double-blind such that neither the experimenter nor the subject knows if they got the medicine or placebo.

Good studies are replicable by others to confirm the theory being advanced. If it cannot easily be replicated, it does not get a high level of confidence The hallmark of a good theory is that it accurately predicts what happens in the real world. A theory that does not have predictive capability is a failure. A common methodology is to test what is known as the "null hypothesis." This is the hypothesis that what is being tested will not have the desired effect. It is often easier to disprove the null hypothesis than the original affirmative hypothesis.

The least reliable level of evidence is anecdotal evidence, personal experience, and expert opinion. They may be used as low-level arguments in informal persuasion but they are not even evidence or data until they've been analyzed by skeptical experts. Even then, at best they point to a possibility while proving nothing. Human observations are too unreliable for individuals or even small groups.

The best evidence is a review of multiple peer-reviewed studies from reputable science journals. This doesn't guarantee the "correct" answer but it offers the highest level of confidence. Scientists do not live in a world of absolute certainty and even a well-accepted theory could be replaced if something that better fits reality and has better predictive value comes along.

 

[Crossbreed]

I agree that the OP is the formal method of advancing a cure, but I believe that there are lesser, provisional methods that are helpful, too. The latter are often the result of "black box" analysis.

Since the "internal functioning" of the black box is not clearly understood, it does not meet the criteria for publishing, but can be very practical.

Semmelweis is a good example of black box analysis. Experimentally, he showed improved obstetric mortality outcomes to be attributed to hand-washing even if he did not understand the mechanism behind it. (Germ theory would be discovered many years later by Koch, Pasteur & Lister.)

In the absence of germ theory, hand-washing is not too much to ask.

 

[Darkkin]

I was diagnosed with HoFH (homozygous mutation) in college. Basically inherited extremely high cholesterol that is drug resistant due to a mutation that differs from the fairly common heterozygous version (Affects 1 in 250). Homozygous version affects 1 in 250,000.

Apheresis was the only semi-effective treatment available. (Think dialysis but for cholesterol.) They plug you into a machine bi-weekly and run a spin cycle on your blood to reduce the cholesterol and then run it back in. Time consuming (3 - 5 hours) and it hurts. Collapsed vessels, missed needle jabs, and just the trauma of the process. You feel like death warmed over the next day.

I was lucky to live near not only a hospital that had the treatment facility, but also one of the top research centers in the country. They were looking to test an entirely new class of cholesterol inhibitors they called a PCSK-9. It was an injectable medication that worked over an extended period of time.

Their criteria was strict, miss even one apheresis appointment and you couldn't be part of the trial. For me at this point, it physically hurt to exist, my angina was nearly chronic. You had to deal ruptured vessels, extreme fatigue, etc...(It was a pretty rough place). This was literally do or die. At the time I was one of the sickest and youngest members of the trial, but I qualified.

Needless to say, the medication worked and was approved by the FDA. Due to other structural abnormalities from my EDS the PCSK-9 is not as effective in me as it is in less complex cases, but it is a huge help.

I went from apheresis bi-weekly to an injection every two week and apheresis every eight weeks. The risk was worth the reward. This trial helped a lot of people that didn't respond to conventional treatments.

It started as a shot in the dark for 4 in 1,000,000 people and it lead to one of the biggest cardiac treatment breakthroughs in the last 20 years.

Statins still work for a huge percentage of the population, but the side effects can be significant. Not so with the PCSK-9s.

This was a study designed around treating a herd of zebras, but the got a couple unicorns, too.

While it isn't a cure it is a quantum leap in treatment effectiveness and quality of life.

 

[Fino]

My guess is that those who need to read this are the ones who won't bother to do so.

 

[Matthias]

You need to do a randomized controlled trial (RCT)

Suppose someone without a college degree believes that better parenting, CBT, or homeopathy can cure autism. How would they conduct a randomized controlled trial (RCT) to prove it?

A scientific journal will have several experts in the field review it and see if it merits further attention. If everything looks good, they'll publish.

Would scientific journals publish a study conducted by someone without any degrees or experience?

 

[Fino]

From what I've read scientific journals tend to be an echo chamber, rejecting anything that doesn't fit with their image. And studies are expensive to conduct.

 

[Thinx]

Suppose someone without a college degree believes that better parenting, CBT, or homeopathy can cure autism. How would they conduct a randomized controlled trial (RCT) to prove it?



Would scientific journals publish a study conducted by someone without any degrees or experience?

No. You would have needed to study the subjects in depth, not just have a strong opinion. RCTS are massively expensive, and for example, the one to show effectiveness of Systemic therapy failed because although the systemic family clients attended their therapy and got on well, most of the comparison group, (CBT ), dropped out. This unfortunately rendered the trial unusable.

I am sure all the things you mention can be useful to some though. It's clear from much research that one size doesn’tfit all.

 

[Matthias]

No. You would have needed to study the subjects in depth, not just have a strong opinion. RCTS are massively expensive, and for example, the one to show effectiveness of Systemic therapy failed because although the systemic family clients attended their therapy and got on well, most of the comparison group, (CBT ), dropped out. This unfortunately rendered the trial unusable.

I am sure all the things you mention can be useful to some though. It's clear from much research that one size doesn’tfit all.

So the average person who finds a cure for something can't do anything about it other than share their anecdote/personal experience that the scientific community will promptly dismiss as almost worthless. Parents who witnessed their children recover from autism after putting them on a gluten-free/dairy-free diet or giving them herbs, homeopathy, or vitamins, should keep it to themselves since they don't have much to offer to improve our understanding of autism?

It's easy to dismiss other people's experiences but what would you do if a relative made you an herbal tea that she claimed cured her child of a horrible chronic disease that doctors claim is genetic and it cured you of the same disease after drinking it?

 

[Neonatal RRT]

Be careful with cognitive biases and thinking errors, folks,...I am seeing quite a few amongst the posts here.

Some studies can be expensive, some are not. The most difficult process is actually obtaining approval to do studies with animals and humans. In the US, we have to go through Investigational Review Boards. If you need funding for a study, then you have to apply to sometimes many sources and it can take years. If you are doing anything that involves the FDA, CDC, NIH, there is an equally frustrating amount of government "red tape". Frankly, it's amazing that any of us can actually do published research in the US.

I am a prolific reader of scientific literature,...on the order of over 1000 articles a year,...no exaggeration. If "something" appears to be rejected, per se, it is because it is not consistent with the context and perspective of the study topic. All scientific knowledge of this world begins with an anecdotal observation,...then a slow, methodical, and sometimes very time exhaustive series of experiments to tease out the truth. In the end, it comes out to be multiple truths, "this" happens in "that" situation,...but not another situation. Change the context and perspective,...and yet something else happens.

Furthermore, to suggest that a "group think" bias occurs in science is also a thinking error,...and when I say this, please understand that scientists gain recognition within their own community by having innovative and profound discoveries,...NOT following a certain line of thinking. It forces people to come up with different ideas,...not the same ideas. The scientific community is also very much the very worst and vicious of skeptics when it comes to peer review,...because everyone's reputation is on the line. One bad study gets attention from the public, it's a huge "smudge mark" on the entire community. If you've ever been to a scientific conference,...I have many times,...I've presented many times,...I am a published author myself,...200+ people in the audience standing up and firing questions at you, sometimes trying to find holes in your arguments,...not to mention the commentaries in the journals,...it can be brutal. If you can survive that sort of "heat", then your work can stand. There is no such thing as an "echo chamber" if you take deep dives into any topic.

The body of knowledge on any topic, as it expands, will expose different outcomes under different circumstances. It is important to understand that when a topic of study is relatively "young" and not yet studied with sufficient depth that we all understand our ignorance and not lock in our thinking,...it must evolve and change as we obtain new information over time. Doctors and scientists ARE NOT supposed to KNOW everything,...if they did, learning would cease. The best expert in any topic only knows the CURRENT body of knowledge on that specific topic,...knowing full well that more information will follow and that the application of that knowledge must change.

The Dunning-Kruger effect,...the people with the MOST knowledge are the people with the LEAST amount of confidence in it,...and vice-versa.

Take care everyone.

 

[Darkkin]

When considering a 'cure' it is probably prudent to consider the nature of the disease or disorder (with autism as it is an atypical neurological interface that impacts daily life), it is a chronic condition versus an acute condition like strep throat or the chickenpox.

The nature of the disorder determines the course treatment.

e.g. You don't use CBT to treat an acute infection. (Depending on the type of infection it might be antibiotics or an antiretroviral and likely an anti-inflammatory.)

As Scotty always said: 'The right tool for the right job.'

So what is the nature of the disorder.

Autism is organic, chronic: It is literally how our nervous systems interpret the world around us.

To continue with our starship analogy:

'Sure, she's got a fine engine, but half the doors don't open. And guess whose job it is to make it right?'

So what is the point of Mr. Scott's observation? Basically, some parts of our neural network can function exceptionally well and others are doing:

(I'll need to come back to this. I have to get ready for work...)

 

[Marla]

I have great respect for the scientific method and the level of education and professionalism involved in advancing medical understanding. I also see the effects of the aforementioned "science" on autistic lives.

So the average person who finds a cure for something can't do anything about it other than share their anecdote/personal experience that the scientific community will promptly dismiss as almost worthless. Parents who witnessed their children recover from autism after putting them on a gluten-free/dairy-free diet or giving them herbs, homeopathy, or vitamins, should keep it to themselves since they don't have much to offer to improve our understanding of autism?

It's easy to dismiss other people's experiences but what would you do if a relative made you an herbal tea that she claimed cured her child of a horrible chronic disease that doctors claim is genetic and it cured you of the same disease after drinking it?

Could you define the word "cure" as it pertains to your argument?
Tea won't retroactively prune synapses; the neurology remains.
Tea can support gut biome which will provide greater capacity for cortisol dumping; adverse symptoms of unpruned synapses are improved.

 

[Marla]

I agree that the OP is the formal method of advancing a cure, but I believe that there are lesser, provisional methods that are helpful, too. The latter are often the result of "black box" analysis.

Since the "internal functioning" of the black box is not clearly understood, it does not meet the criteria for publishing, but can be very practical.

Semmelweis is a good example of black box analysis. Experimentally, he showed improved obstetric mortality outcomes to be attributed to hand-washing even if he did not understand the mechanism behind it. (Germ theory would be discovered many years later by Koch, Pasteur & Lister.)

In the absence of germ theory, hand-washing is not too much to ask.

"Black box" is a new term for me. I like it.
Scientific hypothesis have to come from somewhere. In the current capitalistic (patriarchal/puritanical) society the hypothesis for autism is disorder/deficit based and research is conducted with "cure" in mind.
I reject this model.
I will make it my remaining life's work to collect, analyse, promote, publish first hand, lived, anecdotal data and evidence so that the true majesty of autism can be mapped and codified. Better hypothesis= better science

 

[Crossbreed]

Parents who witnessed their children recover from autism after putting them on a gluten-free/dairy-free diet or giving them herbs, homeopathy, or vitamins, should keep it to themselves since they don't have much to offer to improve our understanding of autism?

That means you have only alleviated a specific irritant, not autism in any meaningful way.
With our hypersensitivity, such alleviation is welcome, if effective, but we will still be agitated by it, if it is reintroduced.

In Semmelweis' case, women in his care were dying too frequently from "childbed fever." He noticed that such cases were non-existent for some Jewish midwives that he knew about. He tried to copy their procedures to see if that would solve the problem.

The first few things he tried brought no improvement. Then he tried hand-washing and it greatly improved their outcomes.

Next, he divided his obstetrics cases into two groups: those with hand-washing and those without. The first group saw no deaths from childbed fever while the second continued to see them at their previous rates.

Some would insist that he made an unauthorized experiment, but the technique was not experimental at all --it was routinely practiced by the Jewish midwives. It was just new to him.

And granted, no one knew (until later) why the first group was spared and the second group was not, but hand-washing was a small price to pay to secure such positive results.

In the case of autism, the goal is not to eradicate autism, itself, but to cure or prevent severe co-morbid conditions (of ASD2/3) to pre-1979 levels. Any action that reduces the need for special education services can be considered a win by "black box" standards.
tags: long-bus autism, short-bus autism

 

[Gerald Wilgus]

So the average person who finds a cure for something can't do anything about it other than share their anecdote/personal experience that the scientific community will promptly dismiss as almost worthless. Parents who witnessed their children recover from autism after putting them on a gluten-free/dairy-free diet or giving them herbs, homeopathy, or vitamins, should keep it to themselves since they don't have much to offer to improve our understanding of autism?

It's easy to dismiss other people's experiences but what would you do if a relative made you an herbal tea that she claimed cured her child of a horrible chronic disease that doctors claim is genetic and it cured you of the same disease after drinking it?

Anecdotes are subject to strong confirmation bias. When one looks at available history, positive claims tend to evaporate, the most common is claiming there is a disease where none exists. Read the Skeptical Enquirer for frequent examples.

 

[Darkkin]

Mention of the 'Black Box' cure is interesting because there are a pretty decent number of medications we use, but really don't know exactly how they work. A common one, Tylenol.

Returning to my unfinished post:

The nature of the disorder determines the course treatment.

e.g. You don't use CBT to treat an acute infection. (Depending on the type of infection it might be antibiotics or an antiretroviral and likely an anti-inflammatory.)

As Scotty always said: 'The right tool for the right job.'

So what is the nature of the disorder.

Autism is organic, chronic: It is literally how our nervous systems interpret the world around us.

To continue with our starship analogy:

'Sure, she's got a fine engine, but half the doors don't open. And guess whose job it is to make it right?'

So what is the point of Mr. Scott's observation? Basically, some parts of our neural network can function exceptionally well (your own Mr. Spock) and others are having problems with doors. (Some stuck open, some stuck shut, so the flow of information is irregular. Some areas are getting too much input, others not enough. (Like when Sulu forgot to disengage the inertial dampener, when the rest of the fleet leaps to warp. And yes, we are tapping classic and reboot movie cannons.)

An autistic brain can sit there and spin trying to sort the data that is bombarding it. It leads to sensory overload, overwhelm, frustration, irritation, shutdown and/or meltdown.

Things like CBT and DBT can help fix the doors or at least establish detours around the choke points. Tools and workarounds that allow the brain to redirect and refocus when we hit a snag.

We each have a crew, our tools and/or medications that help manage the symptoms of the condition to improve functionality and quality of life.

This is what living with a chronic illness is like. (And to be clear autism is not an illness, but a neurotype). We learn to work with the system we have, but there is no owner's manual that neurotypicals seem to have.

As with any chronic condition there can be acute bouts of crisis. Meltdowns, shutdowns, and/or burnout when the entire system crashes and workable function is impossible.

And it doesn't matter how much therapy one has done, how many tools we have, there will be a crisis at some point.

Akin to getting cancer into remission through surgical intervention, chemotherapy and/or radiation. Triage for the acute and maintenance level treatment to hold the remission.

Chronic with acute crisis.

An acute condition is something that comes on suddenly from an outside influence. Accidents, injuries, or illness. This is not something that is endemic to the existing systems.

Acute conditions of nonendemic origin are really only the type of condition that can comprehensively be considered curable. Getting over a cold. Surgery to repair an injury from a car accident. The setting and healing of a broken bone. The eradication of a pathogen from the body.

Cure is to completely eradicate all symptoms and source material with 0% chance of a recurrence.

By approaching medicine from an endemic and external perspective, it can help clarify which conditions can be addressed at a maintenance level and which can be legitimately cured.

 

[Neonatal RRT]

Furthermore,...

The topic of autism and what causes it has already gone through a long, exhaustive series of experiments to understand that it is not only a prenatal condition, but also genetic, with it's own resultant anatomy and physiology,...especially the past 30 years. This much we do know,...in other words, the idea that it is a post natal condition has already been challenged and proven wrong. We have a body of knowledge that exists. To repeat a rather long series of studies to "prove" that the current body of knowledge is false,...one, immediately locks in a bias,...but also understand that whatever further study on the topic must be built upon the current body of knowledge,...all one can do is add to it and fill in the gaps. We stand on the shoulders of others. One cannot ignore what has already been proven, even if the direction of the knowledge changes over time. To suggest an actual "cure" for autism, or any other prenatal neurological condition, in individuals who already have it would require an actual anatomical and genetic restructuring of the brain. If one understands the life cycle of a neuron, what triggers death and growth, we DO NOT have this ability at this time. We are NOT there yet,...not even close,...and may not even try. Even if we hypothetically could, the actual act of doing a brain restructuring and genetic "resetting" would likely result in a totally different person,...personality, memories, physical abilities, mental abilities,...nearly every metric would be effected,...one would cease to be the person prior to the intervention. The moral and ethical consequences would certainly be prohibitive.

All anyone can do is intervene and make the "best" of an existing underlying condition, from a behavioral/psychological perspective,...but no cure.

 

[Au Naturel]

I agree that the OP is the formal method of advancing a cure, but I believe that there are lesser, provisional methods that are helpful, too. The latter are often the result of "black box" analysis.

Since the "internal functioning" of the black box is not clearly understood, it does not meet the criteria for publishing, but can be very practical.

Semmelweis is a good example of black box analysis. Experimentally, he showed improved obstetric mortality outcomes to be attributed to hand-washing even if he did not understand the mechanism behind it. (Germ theory would be discovered many years later by Koch, Pasteur & Lister.)

In the absence of germ theory, hand-washing is not too much to ask.

That falls under the category of observational studies, (see the attached chart of evidence in order of strength) but then he ran a well-designed (for the time) experiment. The reason for carefully designed experiments and peer-reviewed publication is to weed out invalid results. For every "something that needs further investigation" that pans out there is a larger number that amounts to nothing or even might cause active harm.

 

[Matthias]

I have great respect for the scientific method and the level of education and professionalism involved in advancing medical understanding. I also see the effects of the aforementioned "science" on autistic lives.

Could you define the word "cure" as it pertains to your argument?
Tea won't retroactively prune synapses; the neurology remains.
Tea can support gut biome which will provide greater capacity for cortisol dumping; adverse symptoms of unpruned synapses are improved.

By cure, I mean permanently reverse the cause of a disease (such as antibiotics to eliminate bacteria or CBT to correct distorted thoughts that cause mental problems)

 

[Darkkin]

That falls under the category of observational studies, (see the attached chart of evidence in order of strength) but then he ran a well-designed (for the time) experiment. The reason for carefully designed experiments and peer-reviewed publication is to weed out invalid results. For every "something that needs further investigation" that pans out there is a larger number that amounts to nothing or even might cause active harm.

One example of documented, widespread devastating harm: Thalidomide.

An example of an effective 'Black Box' treatment. The use of iodine and its measurable reduction of cases of cretinism in the post war Pacific Island populations.

 

[Matthias]

The Dunning-Kruger effect,...the people with the MOST knowledge are the people with the LEAST amount of confidence in it,...and vice-versa.

This definitely isn't true for me so I don't think it's accurate or applies to everyone.

This much we do know,...in other words, the idea that it is a post natal condition has already been challenged and proven wrong.

I respect that this is a "personal truth" that you and others believe but I respectfully don't agree with it.

To suggest an actual "cure" for autism, or any other prenatal neurological condition, in individuals who already have it would require an actual anatomical and genetic restructuring of the brain. If one understands the life cycle of a neuron, what triggers death and growth, we DO NOT have this ability at this time. We are NOT there yet,...not even close,...and may not even try. Even if we hypothetically could, the actual act of doing a brain restructuring and genetic "resetting" would likely result in a totally different person,...personality, memories, physical abilities, mental abilities,...nearly every metric would be effected,...one would cease to be the person prior to the intervention. The moral and ethical consequences would certainly be prohibitive.

All anyone can do is intervene and make the "best" of an existing underlying condition, from a behavioral/psychological perspective,...but no cure.

I can't accept this. 1 million studies wouldn't convince me that it's true.