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TikvaBall
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25 Jul 2024, 10:49 am

Personally, I'm not really liking the whole cure talk, but if they could figure out how to ease off the bad traits that can be severely debilitating without traumatizing people, that would be a good thing. I wish they would try to find other types of therapy other than freaking ABA.



Robinism
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25 Jul 2024, 10:24 pm

The original article isn't that bad.
https://www.mdpi.com/2075-4426/14/6/641
"Reversal of Autism Symptoms among Dizygotic Twins through a Personalized Lifestyle and Environmental Modification Approach: A Case Report and Review of the Literature"
Reasons that the ABA was not objectionable in this case:
1. To a toddler, ABA is like play.
2. When the girls were three years old, the ABA was discontinued. It had already had its effect.
3. ABA is much more effective on toddlers than on school-age children.



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26 Jul 2024, 6:10 pm

ASPartOfMe wrote:
carlos55 wrote:
This is the 2nd time such official scientific claim of preventing autism to have been made in the last 2 /3 years or so.

It’s probably distressing to those that are heavily invested in the unproven claims of ND movement of irreversible autism to see such claims undermined.

It shows science is working on this area with some small success and it’s likely to see further successes in the future.

The comments of National Autistic Society are outrageous only in the crazy world of identity politics would the attempt to reduce disability in small children be seen as a negative thing.

They disenfranchise large numbers of autistic people with their comments and shows why you can’t trust these so called advocacy groups that just try to build a dependency group for their own power and offer nothing to those they claim to represent

Usually not a cure, but claims that a promising link or treatment has been found is made seemingly every day.

The idea sort of makes sense. What they did is instead of testing one treatment they used all the accepted treatments at once. Things that makes sense are not always right. Be that as it may, claiming you can “recover” people based on two people is quackery on steroids.


Your mixing the usual junk internet cure claims that are financially motivated to this official scientific study.

The problem is largely the reaction to it from ND movement it would seem they would rather a child remain disabled dependent on them to talk for them, rather than have their disability fixed and have the full opportunities every child should have to grow up to be an independent adult.

They should ask themselves why is that and question their moral judgement.

If you polled most people I would bet my life they would agree by a huge majority that a child should be cured in principle of disability if it was available.

This is why in rhe end the arguments of ND will never be accepted and they have to resort to semantics to try to justify the unjustifiable.


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26 Jul 2024, 6:25 pm

carlos55 wrote:
ASPartOfMe wrote:
carlos55 wrote:
This is the 2nd time such official scientific claim of preventing autism to have been made in the last 2 /3 years or so.

It’s probably distressing to those that are heavily invested in the unproven claims of ND movement of irreversible autism to see such claims undermined.

It shows science is working on this area with some small success and it’s likely to see further successes in the future.

The comments of National Autistic Society are outrageous only in the crazy world of identity politics would the attempt to reduce disability in small children be seen as a negative thing.

They disenfranchise large numbers of autistic people with their comments and shows why you can’t trust these so called advocacy groups that just try to build a dependency group for their own power and offer nothing to those they claim to represent

Usually not a cure, but claims that a promising link or treatment has been found is made seemingly every day.

The idea sort of makes sense. What they did is instead of testing one treatment they used all the accepted treatments at once. Things that makes sense are not always right. Be that as it may, claiming you can “recover” people based on two people is quackery on steroids.


Your mixing the usual junk internet cure claims that are financially motivated to this official scientific study.

The problem is largely the reaction to it from ND movement it would seem they would rather a child remain disabled dependent on them to talk for them, rather than have their disability fixed and have the full opportunities every child should have to grow up to be an independent adult.

They should ask themselves why is that and question their moral judgement.

If you polled most people I would bet my life they would agree by a huge majority that a child should be cured in principle of disability if it was available.

This is why in rhe end the arguments of ND will never be accepted and they have to resort to semantics to try to justify the unjustifiable.

I think it is the scientists who have a profit motive by getting people excited about a study that to put it generously is extremely preliminary.


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26 Jul 2024, 8:05 pm

"Cures" from genetic differences might be of questionable value if sometimes the genetic difference does "good".

Maybe it would be better to make the world inclusive of differences.


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28 Jul 2024, 8:19 am

Double Retired wrote:
"Cures" from genetic differences might be of questionable value if sometimes the genetic difference does "good".

Maybe it would be better to make the world inclusive of differences.


Many of these historical figures were never diagnosed.

Even if they were the key word is “in spite of autism”

Many of the types of achievements of famous autistic people were also done by NTs. But nobody bothers talking about that because it’s nothing unusual.

There are a few child authors but when an autistic boy writes a book it’s newsworthy

Like many of the posts As Part Of Me submits on here news articles about autistic people doing something special. Things done by NT all the time but for an autistic person it becomes special because they overcame whatever problems they had.

Like Motor Neuron Disease is a horrible condition to have but Steven Hawkins overcame his disability to do amazing things in the science field. For the other 99.9% that isn’t the case.


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28 Jul 2024, 12:30 pm

carlos55 wrote:
Like many of the posts As Part Of Me submits on here news articles about autistic people doing something special. Things done by NT all the time but for an autistic person it becomes special because they overcame whatever problems they had.

Like Motor Neuron Disease is a horrible condition to have but Steven Hawkins overcame his disability to do amazing things in the science field. For the other 99.9% that isn’t the case.

Each person I post about is different and so are their circumstances but in general I do not think of the people I post about as doing something special but accomplishing something. I started posting them at a time on WP where a lot of members expressed the belief that Autism is a curse(that actual word was oft used) that dooms them to be a failure in life. This sentiment is not expressed nearly as much here anymore, but the depression and suicide rate among a autistics is still atrocious suggesting that members are choosing not to express them for whatever reasons.

What I would like them to overcome is the assumption that autism dooms them to lifetime of failure. The hope is that often showing examples of autistics accomplishing things will help. Whether their failure is due impairments caused by autism, society or some combination is important but of secondary importance at the moment. Without at least some self esteem they will be doomed to a life of failure. Even with great self esteem the member is most likely not going to accomplish something notable enough to make the news. The hope is, is that the member begins the process of figuring out what accomplishments are obtainable.

Studies that attempt to “recover” or “cure” autistics give hope to autistics and their loved ones who feel autism is a very bad thing. Human tendency is get lazy as while waiting for the cure to arrive. If this or another cure plan is for real ND movement supporters of all stripes will have two basic choices. Admit their basic assumptions are wrong. Be much more of an outlier. They still may be right but the world that will have moved on without them.

Maybe the scientists are on to something but as with most studies so preliminary probably not. Even if they are correct we are still a looong way for it to be proven and in mainstream use. For now what the publicity about this treatment plan in combination with other “suggestions” of breakthroughs give false hope to or hope too soon to desperate autistics and their loved ones.

These type of claims do hurt the ND movement. It does slow down the in belief in ideas ranging from autism is not inherently mostly to all bad to autism as a variation that should be completely accepted. Whether this is a needed step towards reality or a tragedy for now is subjective opinion because scientific understanding is still lacking.


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30 Jul 2024, 5:39 am

ASPartOfMe wrote:
carlos55 wrote:
Like many of the posts As Part Of Me submits on here news articles about autistic people doing something special. Things done by NT all the time but for an autistic person it becomes special because they overcame whatever problems they had.

Like Motor Neuron Disease is a horrible condition to have but Steven Hawkins overcame his disability to do amazing things in the science field. For the other 99.9% that isn’t the case.

Each person I post about is different and so are their circumstances but in general I do not think of the people I post about as doing something special but accomplishing something. I started posting them at a time on WP where a lot of members expressed the belief that Autism is a curse(that actual word was oft used) that dooms them to be a failure in life. This sentiment is not expressed nearly as much here anymore, but the depression and suicide rate among a autistics is still atrocious suggesting that members are choosing not to express them for whatever reasons.

What I would like them to overcome is the assumption that autism dooms them to lifetime of failure. The hope is that often showing examples of autistics accomplishing things will help. Whether their failure is due impairments caused by autism, society or some combination is important but of secondary importance at the moment. Without at least some self esteem they will be doomed to a life of failure. Even with great self esteem the member is most likely not going to accomplish something notable enough to make the news. The hope is, is that the member begins the process of figuring out what accomplishments are obtainable.

Studies that attempt to “recover” or “cure” autistics give hope to autistics and their loved ones who feel autism is a very bad thing. Human tendency is get lazy as while waiting for the cure to arrive. If this or another cure plan is for real ND movement supporters of all stripes will have two basic choices. Admit their basic assumptions are wrong. Be much more of an outlier. They still may be right but the world that will have moved on without them.

Maybe the scientists are on to something but as with most studies so preliminary probably not. Even if they are correct we are still a looong way for it to be proven and in mainstream use. For now what the publicity about this treatment plan in combination with other “suggestions” of breakthroughs give false hope to or hope too soon to desperate autistics and their loved ones.

These type of claims do hurt the ND movement. It does slow down the in belief in ideas ranging from autism is not inherently mostly to all bad to autism as a variation that should be completely accepted. Whether this is a needed step towards reality or a tragedy for now is subjective opinion because scientific understanding is still lacking.


Accepting reality and making the best of your situation doesn't have to be mutually exclusive.

I don't know of any large disability groups that think this way apart from small cultish ideas related to deafness when cochlear implants first came out that has now largely died out.

As a minimum the National Autistic Society are supposed to represent all autistic people including those with the most severe & debilitating symptoms.

Its clear they think nothing of autistic children with a lifespan of around 40 or others with the most negative likely outcomes, as usual they are top heavy representing those with the most minor functional problems.


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12 Aug 2024, 8:26 am

Study does not show autism can be ‘reversed’, experts say - Reuters Fact Check

Quote:
A U.S. study does not show severe autism can be “reversed”, contrary to misleading headlines shared on social media making that claim and calling the results a “miracle”.

The case report of just two young girls is anecdotal, based on “questionable” methods and may only show the girls were taught new behaviours that masked or reduced some symptoms, according to experts who also criticised media coverage of the study.

Facebook posts, opens new tab, sharing newspaper headlines about the study, said: “Autism can be reversed, scientists discover”, and: “’Miracle’ trial claims severe autism can be reversed”. One post, opens new tab on X received more than 28,000 views

It was a case study, not a clinical trial of any kind.

The study authors described a long list of interventions by clinicians and the girls’ parents - including dietary changes, speech therapy and applied behaviour analysis - and reported that the girls’ scores improved in some behavioural categories on the Autism Treatment Evaluation Checklist (ATEC), opens new tab, a questionnaire that aims to assess the effectiveness of autism treatments.

However, experts say claiming the study shows autism can be reversed is wrong because a possible reduction in one category of symptoms would not be a “reversal” of the condition or autism diagnosis and two individuals is too small a sample to draw any conclusions from. The published study also acknowledges: “Since there were fewer than three individuals in this report, this is not considered a systematic investigation designed to contribute to generalizable knowledge”.

Experts added there are also inconsistencies in how the study was carried out and question marks about the conclusions it draws.

STUDY LIMITATIONS
The study takes a biomedical approach which looks at the impact of factors such as nutrition and environment on autism, Jonathan Green, a professor of child and adolescent psychiatry from the University of Manchester, said in a phone interview.

“There are some questionable things in the study’s introduction about how much autism is due to the environment and how much is heritable,” Green said. “There is debate but the scientific consensus is that autism is highly heritable. It's a complex heritability, but overall, it's highly heritable in its manifestation.

The report said the girls were assessed using the Autism Diagnostic Observation Schedule (ADOS),, opens new tab a standardised test for autism spectrum disorder, but did not disclose their scores.

One test took place during the COVID-19 pandemic, which Green said could have thrown up unreliable results.l

"It does mean you can't score the ADOS up very well,” he added. “And you can get some, you know, unusual effects, basically because the kid is looking at people with masks on. They can react in slightly unusual ways.”

The study said the girls’ improvement “manifested in reductions of Autism Treatment Evaluation Checklist (ATEC) scores from 76 to 32 in one of the twins and from 43 to 4 in the other twin”.
But Luke Beardon, a senior lecturer in autism at Sheffield Hallam University, said the checklist was subjective and measured whether someone’s behaviour had changed, not their autism.

“For example, one of the questions it asks is, does a child play with toys appropriately?” Beardon said in a phone interview. “If at a behavioural level you say, ‘Okay, well, this child is utilising these toys, not in a way they were intended for the mainstream population, and we're going to behaviourally teach them how to play with them’, and they change their behaviour, that doesn't make them any less autistic. You've just taught them to behave in a different way.”

STUDY CRITICISED
In a letter drafted for the Daily Telegraph, several experts said extensive intervention in early life can produce changes that impact how children score on behavioural or diagnostic tests.
“But this anecdotal case study is unable to tell us anything about whether ‘autism can be reversed’,” said the letter, which was co-signed by Rosa Hoekstra,, opens new tab Cathy Manning,, opens new tab David Menassa, opens new tab, Catherine Fava, opens new tab and Rachel Moseley., opens new tab

“It is methodologically weak, selectively describes only two children, and lacks sufficiently rigorous data collection and adequate follow-up of the children,” the letter continues, adding, “An anecdote from parents noticing some changes in their two children does not constitute scientific evidence.”

Research has shown that the way someone’s autism presents itself over time can change and symptoms can become less severe with age. For example, a 2020 study looking at the severity of autism symptoms in children aged 3 and then 6 found nearly 30% of the 125 participants sampled saw a decrease, opens new tab.

However, the idea that autism disappears, and someone is no longer autistic, is incompatible with what we know about the condition, Moseley, a principal academic in psychology at Bournemouth University, told Reuters in an email.

ENVIRONMENTAL IMPACT
Christopher D'Adamo, an assistant professor at the University of Maryland School of Medicine, who co-authored the case study, said that other studies have found certain interventions can improve autism symptoms and his team’s paper followed reporting guidelines for case reports.
Referring to debate over whether autism is primarily a heritable, or genetic, condition and environmental influences have little impact, D'Adamo said in an email, "We cited several studies in the paper that demonstrated that autism likely has both genetic and environmental contributors. It is unclear how much can be attributed to either and it likely varies considerably.
“What is clear is that autism is a heterogenous diagnosis where very little can be generalized to the entire population. While scientists continue to better define subtypes of autism to understand both etiology and developmental trajectory of those diagnosed with autism, detailed case reports (such as ours and those provided above) are an invaluable research tool for capturing the experiences of underrepresented populations of autistic individuals.”

D'Adamo added that the unscored ADOS assessments pointed out by critics were due to the COVID pandemic.

VERDICT
Misleading. A case study describing possible behavioural improvements in two young children diagnosed with severe autism found reductions in one category of symptoms but does not show that autism can be “reversed.”


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12 Aug 2024, 12:59 pm

carlos55 wrote:
Double Retired wrote:
"Cures" from genetic differences might be of questionable value if sometimes the genetic difference does "good".

Maybe it would be better to make the world inclusive of differences.


Many of these historical figures were never diagnosed.

Even if they were the key word is “in spite of autism”

Many of the types of achievements of famous autistic people were also done by NTs. But nobody bothers talking about that because it’s nothing unusual.

There are a few child authors but when an autistic boy writes a book it’s newsworthy

Like many of the posts As Part Of Me submits on here news articles about autistic people doing something special. Things done by NT all the time but for an autistic person it becomes special because they overcame whatever problems they had.

Like Motor Neuron Disease is a horrible condition to have but Steven Hawkins overcame his disability to do amazing things in the science field. For the other 99.9% that isn’t the case.
Autism wasn't separately identified until relatively recently. The historical figures can only be retroactively diagnosed, with a note that there's no way to be sure.

"in spite of Autism" is an assumption. We don't know how much Autism contributed in a positive way. I am not my parents' only child but I am the only one that is Autistic. And, in our family, I have done the best academically, professionally, and financially. The others have perhaps done better socially.

And while those historical figures thought to be Autistic are not the only ones to have achieved in their area of specialization, some of them standout for excellence.

The stereotypes for Autism would suggest no Autistic would ever do well. But sometimes they do exceedingly well...in spite of social difficulties because they are different.

If NTs weren't averse to people who are different, how much more could Autistics have accomplished?

Of course, one complication is that Autism is a "spectrum" disease. Different people express it differently. Strictly speaking I think it might encompass multiple "disorders" that have similar symptoms. I certainly would not assert that all of those disorders were good...not that all were bad.


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12 Aug 2024, 2:05 pm

Double Retired wrote:
Of course, one complication is that Autism is a "spectrum" disease. Different people express it differently. Strictly speaking I think it might encompass multiple "disorders" that have similar symptoms. I certainly would not assert that all of those disorders were good...not that all were bad.


That's the point either they represent all people with autism or just some.

A more skilled representative who claimed to represent all, would simply say opinions are personal, some people are ok with their autism others not, its a spectrum of disability with some very disabled, others less so, and leave it at that.

Rather he jumped onto one side disenfranchising a large number of people he is supposed to represent talking on their behalf claiming an opinion they don't agree with.

That's not proper representation of a group where there is a split in opinion on one of the main issues in autism.


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13 Aug 2024, 1:29 pm

I came across an interesting article today that discussed a cure for Autism.

'Cures' for Autism, and Conflicts of Interest

The article went into a discussion of why the study was bad. So I looked inside.

A case report published in the Journal of Personalized Medicine described two fraternal twins diagnosed with autism when they were 20 months old. The case report and corresponding headlines claim complete reversal of symptoms. The diagnosis itself is not worthy of a case report. However, how the providers subsequently cared for the children is what warranted the case report.

Allostatic load is the cumulative wear and tear that the body experiences after repeated chronic stressors. This was the driving theory behind the treatment modalities in this case. Specifically, the twins were treated with a combination of:

-- “A strictly gluten-free, casein-free diet that was low in sugar and had no exposure to artificial colors, dyes, or ultra-processed foods. An emphasis was placed on consuming organic, unprocessed, freshly prepared, and home-cooked food from local sources when possible.

-- A number of dietary supplements, including omega-3 fatty acids, a multivitamin, vitamin D, carnitine, 5-methyltetrahydrofolate, and bio-individualized homeopathic remedies, were taken by both girls.

-- The family consulted a naturopathic doctor who guided them in some DNA-targeted precision medicine using the IntellxxDNA genomics tool.”

This looks like an interesting study. Aspies exhibit a variety of symptoms. Some of us are very sensitive to taste, touch, sound, vision, smell. So taste is one of these differences. So the idea that some of the foods we eat may produce a severe reaction inside us seems to make sense to me.

I did a quick scan of the internet and came across another similar discussion.

Understanding Taste Sensitivity in Autism


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13 Aug 2024, 2:10 pm

jimmy m wrote:
I came across an interesting article today that discussed a cure for Autism.

'Cures' for Autism, and Conflicts of Interest

The article went into a discussion of why the study was bad. So I looked inside.

A case report published in the Journal of Personalized Medicine described two fraternal twins diagnosed with autism when they were 20 months old. The case report and corresponding headlines claim complete reversal of symptoms. The diagnosis itself is not worthy of a case report. However, how the providers subsequently cared for the children is what warranted the case report.

Allostatic load is the cumulative wear and tear that the body experiences after repeated chronic stressors. This was the driving theory behind the treatment modalities in this case. Specifically, the twins were treated with a combination of:

-- “A strictly gluten-free, casein-free diet that was low in sugar and had no exposure to artificial colors, dyes, or ultra-processed foods. An emphasis was placed on consuming organic, unprocessed, freshly prepared, and home-cooked food from local sources when possible.

-- A number of dietary supplements, including omega-3 fatty acids, a multivitamin, vitamin D, carnitine, 5-methyltetrahydrofolate, and bio-individualized homeopathic remedies, were taken by both girls.

-- The family consulted a naturopathic doctor who guided them in some DNA-targeted precision medicine using the IntellxxDNA genomics tool.”

This looks like an interesting study. Aspies exhibit a variety of symptoms. Some of us are very sensitive to taste, touch, sound, vision, smell. So taste is one of these differences. So the idea that some of the foods we eat may produce a severe reaction inside us seems to make sense to me.

I did a quick scan of the internet and came across another similar discussion.

Understanding Taste Sensitivity in Autism


Existing WP thread about study


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13 Aug 2024, 8:32 pm

jimmy m wrote:
-- The family consulted a naturopathic doctor . . .

That killed my interest right there.  Naturopathiy is quack science.

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Naturopaths claim to be holistic, which means they believe that the natural body is joined to a supernatural soul and a non-physical mind and the three must be treated as a unit, whatever that means. Naturopathy is fond of such terms as "balance" and "harmony" and "energy."  It is often rooted in mysticism and a metaphysical belief in vitalism (Barrett).

Naturopaths are also prone to make grandiose claims about some herb or remedy that can enhance the immune system.  Naturopaths also promote the idea that the mind can be used to enhance the immune system and thereby improve one's health.


If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck.


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13 Aug 2024, 11:41 pm

I'm amazed that The Daily Mail hasn't gone out of business.


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14 Aug 2024, 11:44 am

I wrote, "Aspies exhibit a variety of symptoms. Some of us are very sensitive to taste, touch, sound, vision, smell. So taste is one of these differences. So the idea that some of the foods we eat may produce a severe reaction inside us seems to make sense to me."

According to Types of Sensory Issues in Autism: Examples and Treatment Options

Traits of Autism May Include Sensory Issues

People with autism experience social and communication challenges as well as what is known as restricted or repetitive behaviors. These behaviors look different from one person to another, but the behaviors that a person with autism displays generally include at least two of the following (DSM-5):

-- Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

-- Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, a need to take the same route or eat the same food every day).

-- Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

-- Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

So, as you can see in the last item mentioned, people with autism can be hyperreactive or hyporeactive to sensory input or they can have unusual interests in sensory stimuli around them.


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