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

[VictorR]

I've very knowledgable and have GREAT confidence in my knowledge so I don't think this is accurate or applies to everyone.



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



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

If you were trying to prove @Neonatal RRT's comment about the Dunning-Kruger Effect you have done so with flying colors.

Generally speaking, the more one knows about a topic, the more they realize that there's much that they still don't know, and so with experts one would usually expect to see humility rather than boastfulness.

 

[Matthias]

I feel like the whole point of this thread is for people to tell me I should keep my opinions about autism to myself because I must be stupid or confused since my beliefs don't agree with science. At best, I've just found a "personal truth" that's actually false. At worst, I'm spreading dangerous and destructive ideas about autism that can seriously harm people so I should go away.

That's okay. I guess I shouldn't have expected anyone to take me seriously given how all this science is apparently against me. I just think it's sad that anecdotes/personal experiences are given so little value that people are basically told they're imagining what happened to them. Fortunately, I'm resilient so my feelings aren't hurt but I might take a break so the forum will be more peaceful for everyone else.

 

[Neonatal RRT]

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



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



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

Here's the thing,...to suggest that you, or anyone else, are NOT subject to the Dunning-Kruger effect is, at the very least, very foolish,...and likely part of a long list of other psychological and cognitive thinking errors.

A personal truth is based primarily upon individual experiences,...a scientific truth is something else. To take the body of knowledge from "a million studies",...this is, by definition, NOT a personal truth. You are entitled to your beliefs,...but not your own facts.

Matthias,...please,...the cognitive dissonance you are exhibiting is clearly obvious to the group. You ignore and clearly refuse to understand some basic biological principles. I thought for a moment, I've opened a door of common ground here. I've tried to offer you a peace laurel more than once, giving you an intellectual pathway out of the situation you are in,...and yet, you continue to defiantly ignore the scientific work of thousands of researchers over several decades. If you were making your case some 50-60 years ago, you would likely have a leg to stand on,...but the science has simply moved forward, already answered those questions and claims you insist upon sticking to, and have an overwhelming amount of information to prove your beliefs wrong.

I honestly hate posts like this,...I really try to not make personal assessments about people,...it pains me,...but what you are experiencing is not healthy. At this point, I don't know that you can be helped through this.

 

[Marla]

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)

Thx

 

[Matthias]

Here's the thing,...to suggest that you, or anyone else, are NOT subject to the Dunning-Kruger effect is, at the very least, very foolish,...and likely part of a long list of other psychological and cognitive thinking errors.

A personal truth is based primarily upon individual experiences,...a scientific truth is something else. To take the body of knowledge from "a million studies",...this is, by definition, NOT a personal truth. You are entitled to your beliefs,...but not your own facts.

Matthias,...please,...the cognitive dissonance you are exhibiting is clearly obvious to the group. You ignore and clearly refuse to understand some basic biological principles. I thought for a moment, I've opened a door of common ground here. I've tried to offer you a peace laurel more than once, giving you an intellectual pathway out of the situation you are in,...and yet, you continue to defiantly ignore the scientific work of thousands of researchers over several decades. If you were making your case some 50-60 years ago, you would likely have a leg to stand on,...but the science has simply moved forward, already answered those questions and claims you insist upon sticking to, and have an overwhelming amount of information to prove your beliefs wrong.

I honestly hate posts like this,...I really try to not make personal assessments about people,...it pains me,...but what you are experiencing is not healthy. At this point, I don't know that you can be helped through this.

If you experienced what I did, I guarantee all the science you know would go out the window. Maybe I'm crazy or a fool but I don't think I'm as dumb as I look.

 

[Marla]

I feel like the whole point of this thread is for people to tell me I should keep my opinions about autism to myself because I must be stupid or confused since my beliefs don't agree with science. At best, I've just found a "personal truth" that's actually false. At worst, I'm spreading dangerous and destructive ideas about autism that can seriously harm people so I should go away.

That's okay. I guess I shouldn't have expected anyone to take me seriously given how all this science is apparently against me. I just think it's sad that anecdotes/personal experiences are given so little value that people are basically told they're imagining what happened to them. Fortunately, I'm resilient so my feelings aren't hurt but I might take a break so the forum will be more peaceful for everyone else.

I am actively trying to collect personal experiences from autistic adults. I'm afraid I'm not very good at navigating this forum (maybe it's better on PC?). I'd hoped this could be a place to do it. I gladly accept advice on how to share or collaboration in project size.

 

[Au Naturel]

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?

Unless you were a trained researcher with a Ph.D. (minimum) in the correct field, the best you could do is find a research professional and lay out your case before them. If they get excited, you've done what you can do. I am deeper into the scientific community than most and would never dream of trying to conduct my own RCT of a proposed medical treatment. Or even attempt an observational study. Medical research requires resources and advanced biological training that I don't have. I wouldn't even trust 99 out of a hundred MDs to do it and get it right.

I might have a discussion with the appropriate office at a research university or private research company. Or I might find a starving undergrad and convince him to do his doctoral thesis on investigating it.

You might not need to do any research at all. Most topics of interest have had multiple studies performed. The source of choice for medical research is PubMed. Not http://autisticmoms.com. Not even The American Journal of Homeopathic Medicine. (Obvious bit of bias there, eh?) I did a quick search on homeopathic remedies and autism and this was the first result I got:

https://pubmed.ncbi.nlm.nih.gov/11341462/

 

[Gerald Wilgus]

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

Do not foget Cognitive Processing Therapy (CPT). I was fortunate to find somebody skilled in guiding me through it.

 

[Au Naturel]

"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

Actually, it is not at all. Current medical research is almost entirely on cause and therapeutics.

 

[Darkkin]

I've been reading a bit on cognitive dissonance...

Essentially: Do as I say, not as I do.

Ironically, CBT is one of the primary forms of treatment for the issue. CBT, which anecdotally 'cures' the autistic neurotype. Thusly, since CBT has proven effective on one issue, why does the second issue exist, since CBT 'cured' the entire nervous system of abnormalities.

Just like the autism, treat it like it doesn't exist, it is 'cured' by CBT, rather than a workable reduction in symptoms.

 

[Au Naturel]

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?

People witnessing things is absolutely the worst kind of data one can have. They want certain results, so they interpret things to match what they want. What one perceives is often not real and the more emotional involvement, the greater the distortion. That is neither good nor bad but it is how humans are. Never mind the placebo effect.

https://www.healthline.com/health/placebo-effect
I'd doubt my judgment and wonder what she slipped into that tea.

 

[Darkkin]

People witnessing things is absolutely the worst kind of data one can have. They want the results they see so they interpret things to match what they want. What one perceives is often not real and the more emotional involvement, the greater the distortion. That is neither good nor bad but it is how humans are. Never mind the placebo effect.

https://www.healthline.com/health/placebo-effect
I'd doubt my judgment and wonder what she slipped into that tea.

Faith healing. These people are among the worst kinds predators preying on people's absolute desperation for impossible 'cures'.

On a hypothetical note, why does one person's anecdotal epiphany count for so much more than someone else's (mine for example)?

What gives them the cachet, the authority to disqualifies any experience or measurable metrics that do not augur well with their own experience.

What is the quantifiable justification of why one anecdotal is better than another?

 

[Au Naturel]

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.

That was a big scandal in Europe in the 50s and 60s and caused major changes in the approval process. The West Germans introduced it and nobody else looked at it closely. (Ironically, East Germany rejected it along with the US.) When defective children started being born they tried to blame it on nuclear weapons testing.

Thalidomide was never approved in the US despite intense pressure to do so. Unfortunately the manufacturer distributed some pills directly to US physicians which caused 7 US children to be born with thalidomide defects. It is an example of what happens when you take shortcuts in medical science and why the approval process is so complex today.

 

[Gerald Wilgus]

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.

People do not generally know that the Consumer Safety Officer at the FDA did not reject Thalidomide because of news of birth defects, she rejected it because the application had insufficient safety data, which should be done during Phase 2 of the Investigative New Drug studies.

 

[Darkkin]

That was a big scandal in Europe in the 50s and 60s and caused major changes in the approval process. The West Germans introduced it and nobody else looked at it closely. (Ironically, East Germany rejected it along with the US.) When defective children started being born they tried to blame it on nuclear weapons testing.

Thalidomide was never approved in the US despite intense pressure to do so. Unfortunately the manufacturer distributed some pills directly to US physicians which caused 7 US children to be born with thalidomide defects. It is an example of what happens when you take shortcuts in medical science and why the approval process is so complex today.

There was a series on Amazon a while back that talked about Thalidomide and how Dr Frances Oldham Kelsey raised concerns and fought against its approval.

The story of what could have happened, but didn't is a perfect example of why due diligence is so important.

 

[Stuttermabolur]

If you experienced what I did, I guarantee all the science you know would go out the window. Maybe I'm crazy or a fool but I don't think I'm as dumb as I look.

People here aren't saying you are dumb (at least not in this thread), they are saying that anecdotal evidence is not a replacement for scientific theory and data. There is a reason that the latter replaced the former and not the opposite, and it's that you can find anecdotal evidence for anything, including completely contradictory conclusions, while scientific theories eventually lead to a better understanding of the subject at hand, even if it isn't perfect and is constantly being modified.

You can find plenty of people for whom going gluten free or undergoing cognitive behaviour therapy had no (or negative) effect on their mental health, so to determine whether the hypothesis is actually true, you need better grounding in studies before you can apply the anecdotal evidence to avoid damage, which can be especially serious when it comes to physical or mental health.

 

[Darkkin]

Two fairly recent and well researched books on the history of autism.

In a Different Key by Zucker and Donovan
Neurotribes: A History of Autism by Silberman

 

[Gerald Wilgus]

Faith healing. These people are among the worst kinds predators preying on people's absolute desperation for impossible 'cures'.

On a hypothetical note, why does one person's anecdotal epiphany count for so much more than someone else's (mine for example)?

What gives them the cachet, the authority to disqualifies any experience or measurable metrics that do not augur well with their own experience.

What is the quantifiable justification of why one anecdotal is better than another?

The Great Randi before his demise had particular ire for faith healers. Being a magician, he could uncover the ruses. He wrote extensively in the Skeptical Inquirer.

 

[Marla]

Actually, it is not at all. Current medical research is almost entirely on cause and therapeutics.

I'm not sure what you are discounting? The nature of how hypothesis are developed, or my life's work?
Neither is contradictory to the attestation that research is directed at causes and therapeutics.

 

[Darkkin]

Think about the things we do to support a 'healthy' lifestyle. Gluten free, dairy free, organic, vegan, sugar free, no sodium, paleo-keto, homeopathic supplements, vitamins, nutritional supplements, protein powder, etc.

How many of us have used a 'folk' remedy like honey on a wound, aloe on sunburn, cranberry juice for a UTI, or CBD oil?

Personally I've used aloe, but that's about it. With my pets, different story. We have Potato Cat on CBD oil to help with trauma anxiety, and a high protein, low carb cat food because he doesn't digest carbohydrates well because he is a cat. Rue Dog is on maintenance level cosequin chews. All homeopathic, but with a huge contingent of anecdotal effectiveness.

These things help. They do not overtly treat or cure any condition, nor are they meant to.

Do a quick read into the quality standards and testing of vitamins and supplements. Look up the regulations on them...It is eye opening.