Subgroups: two biologically different strains of autism - Amaral

[Guest guest]

US researchers' discovery promises answers on autism. Researchers have for the first time identified two biologically different strains of autism in a major breakthrough being compared with the discovery of different forms of cancer in the 1960s....One group of children - all boys - had enlarged brains and most had regressed into autism after 18 months of age; another group appeared to have immune systems that were not functioning properly.... " As an example, if a child has an immune form of autism, it may be that what we want to do is manipulate their immune system rather than trying something else that may be related to synaptic functions in the brain. " ...

[Guest guest]

http://gryffinstail.wordpress.com/2011/09/09/yay-uc-davis-mind-institute-i-3-you/

~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~

US researchers' discovery promises answers on autism. Researchers have for the first time identified two biologically different strains of autism in a major breakthrough being compared with the discovery of different forms of cancer in the 1960s....One group of children - all boys - had enlarged brains and most had regressed into autism after 18 months of age; another group appeared to have immune systems that were not functioning properly...."As an example, if a child has an immune form of autism, it may be that what we want to do is manipulate their immune system rather than trying something else that may be related to synaptic functions in the brain."...

[Guest guest]

THanks for sharing!! Beautiful!! Something to take into the doctor's office for

sure!!

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> > US researchers' discovery promises answers on autism.

> >

> > Researchers have for the first time identified two biologically different

strains of autism in a major breakthrough being compared with the discovery of

different forms of cancer in the 1960s....

> >

> > One group of children - all boys - had enlarged brains and most had

regressed into autism after 18 months of age; another group appeared to have

immune systems that were not functioning properly....

> >

> > " As an example, if a child has an immune form of autism, it may be that what

we want to do is manipulate their immune system rather than trying something

else that may be related to synaptic functions in the brain. " ...

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[Guest guest]

The title of the article is so misleading.. Difficult to comment from the news article on the stage of research and hence how promising it is but good that its one step ahead.

 

THanks for sharing!! Beautiful!! Something to take into the doctor's office for sure!!

>

> >

> > US researchers' discovery promises answers on autism.

> >

> > Researchers have for the first time identified two biologically different strains of autism in a major breakthrough being compared with the discovery of different forms of cancer in the 1960s....

> >

> > One group of children - all boys - had enlarged brains and most had regressed into autism after 18 months of age; another group appeared to have immune systems that were not functioning properly....

> >

> > " As an example, if a child has an immune form of autism, it may be that what we want to do is manipulate their immune system rather than trying something else that may be related to synaptic functions in the brain. " ...

> >

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[Guest guest]

I'm not sure what you find misleading about it. Would love to her your thoughts on why you find it misleading. (no snark intended, pinky promise.)

~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~

The title of the article is so misleading.. Difficult to comment from the news article on the stage of research and hence how promising it is but good that its one step ahead.

THanks for sharing!! Beautiful!! Something to take into the doctor's office for sure!!

>

> >

> > US researchers' discovery promises answers on autism.

> >

> > Researchers have for the first time identified two biologically different strains of autism in a major breakthrough being compared with the discovery of different forms of cancer in the 1960s....

> >

> > One group of children - all boys - had enlarged brains and most had regressed into autism after 18 months of age; another group appeared to have immune systems that were not functioning properly....

> >

> > "As an example, if a child has an immune form of autism, it may be that what we want to do is manipulate their immune system rather than trying something else that may be related to synaptic functions in the brain."...

> >

> >

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[Guest guest]

i think it is fascinating.

take a look at this clip

To: mb12valtrex Sent: Sunday, September 11, 2011 11:36 PMSubject: Re: Re: Subgroups: two biologically different strains of autism - Amaral

I'm not sure what you find misleading about it. Would love to her your thoughts on why you find it misleading. (no snark intended, pinky promise.)

~Antiviral Therapy 101

~ gryffinstail.wordpress.com/ ~

~ @Gryffins_Tail ~

The title of the article is so misleading.. Difficult to comment from the news article on the stage of research and hence how promising it is but good that its one step ahead.

THanks for sharing!! Beautiful!! Something to take into the doctor's office for sure!!

> > > > > US researchers' discovery promises answers on autism. > > > > Researchers have for the first time identified two biologically different strains of autism in a major

breakthrough being compared with the discovery of different forms of cancer in the 1960s....> > > > One group of children - all boys - had enlarged brains and most had regressed into autism after 18 months of age; another group appeared to have immune systems that were not functioning properly....> > > > "As an example, if a child has an immune form of autism, it may be that what we want to do is manipulate their immune system rather than trying something else that may be related to synaptic functions in the brain."...> > > > > > > > > > > > > >>

[Guest guest]

The article only states that they found two strains of autism, after studying few hundreds of autistic kids in their phenome project. Fine, a step forward but what is the benefit of this 'one step forward'? I searched on this phenome website, no updates. I searched pubmed and there are some articles which were published when the work was in progress, may be it is still in progress as their is no final publication in a scientific journal. So its difficult to understand how this 'one step forward' is really going to help in 'promising answers on autism'.

Sometimes popular science writers jump to conclusions so that a layman understands 'the point' but from a scientist's point of view, it may be " just " one step forward and lot more to go. Have seen similar stories with my own research interest and others too. Hence my comment.

I'm not sure what you find misleading about it. Would love to her your thoughts on why you find it misleading. (no snark intended, pinky promise.)

~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~

~ @Gryffins_Tail ~

 

The title of the article is so misleading.. Difficult to comment from the news article on the stage of research and hence how promising it is but good that its one step ahead.

[Guest guest]

I think what you mean is that you would like to read the actual study because if you're a scientist, you already know that one step forward always means many more to go. There are very few studies in which a study doesn't leave much left to be learned. The study likely isn't out yet. It's probably just a press release right now.Most studies that are pro biomed are not published in major medical journals, ensuring they are never considered "legit" while crap citing how safe drugs that are killing people gets through all the time. On the rare occasion something does get through, it gets retracted, careers are ruined and guy who said vaccines are safe commits fraud. *shrugs*I also think that I look at these studies from the perspective of someone having been involved in this for years and it's not that big of a revelation to me. I knew this 5 years ago and I don't need a study to tell me what I already know. But if studies are what you are looking for, I have oodles. On my blog, just click studies. Lots to wade through there. There is plenty of evidence of subtypes of autism.In pubmed, search:"autism HHV6""autism CMV""autism EBV""autism autoimmune""autism immune deficiency""autism vaccine damage" (This one really ticks me off - the government and media desperately want people to believe there is no evidence that vaccines cause damage and yet we have sooooo many studies that prove otherwise.)I can really go on all day. There's more than enough evidence, just very little support. Which is what makes the MIND institute so important. When the Phenome project was initiated in 2006, it was A Very Big Deal. Mainstream support finally said, "We hear you. We're listening and we're gong to do something about it."My point is, the information is already there. Even if you can't read this particular study, there are so many studies that already prove this (ex: we don't *need* a study that says vitamin C in large doses can lessen illness in autism - we already know it can in the general population). And you don't even *have* to look at autism specific studies. We have study on top of study flowing out of our ears. We are in the unfortunate position of getting very little money to fund autism specific studies because as long as it's considered a waste of time, the longer everyone can hide behind the veil of "I dunno." Power struggles suck and that's what this is. We, as an entire world population, are struggling to be in control of our health and hold people accountable for damaging our health. That's why drugs get pushed through without very little (or no) evidence of safety.Absence of evidence is not evidence of absence.Anyway, what are you looking for? My suggestion is to start specific because you can end up reading information for days on end and end up incredibly overwhelmed with information you can't process. Pick a place to start and I'll help you find any studies you need.This particular story *is* a huge step forward for the general media and population. Notsomuch for those of us that have been doing it for years. *shrugs* But it's a Big Deal to have it in print.

~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~

The article only states that they found two strains of autism, after studying few hundreds of autistic kids in their phenome project. Fine, a step forward but what is the benefit of this 'one step forward'? I searched on this phenome website, no updates. I searched pubmed and there are some articles which were published when the work was in progress, may be it is still in progress as their is no final publication in a scientific journal. So its difficult to understand how this 'one step forward' is really going to help in 'promising answers on autism'.

Sometimes popular science writers jump to conclusions so that a layman understands 'the point' but from a scientist's point of view, it may be "just" one step forward and lot more to go. Have seen similar stories with my own research interest and others too. Hence my comment.

I'm not sure what you find misleading about it. Would love to her your thoughts on why you find it misleading. (no snark intended, pinky promise.)

<skullsignatureb & wsepiahandcoloredsmall.png>

~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~

~ @Gryffins_Tail ~

The title of the article is so misleading.. Difficult to comment from the news article on the stage of research and hence how promising it is but good that its one step ahead.

[Guest guest]

Don't get caught up in this. My kids had big heads and immune

problems. All are recovered. Since I have seen docs report that all

their patients with autism had low Vitamin D, and low Vitamin D is

associated with big heads, this is old news. And quite frankly, have

you ever had a doc say they had a patient with autism that didn't have

immune dysfunction? Nah, never heard of it. There is lots of research

out there, so don't read too much into a study, since there are many

conflicting ones.

Love and prayers,

Heidi N

The article only states that they found two strains of autism, after

studying few hundreds of autistic kids in their phenome project. Fine, a

step forward but what is the benefit of this 'one step forward'? I searched

on this phenome website, no updates. I searched pubmed and there are some

articles which were published when the work was in progress, may be it is

still in progress as their is no final publication in a scientific journal.

So its difficult to understand how this 'one step forward' is really going

to help in 'promising answers on autism'.

Sometimes popular science writers jump to conclusions so that a layman

understands 'the point' but from a scientist's point of view, it may be

" just " one step forward and lot more to go. Have seen similar stories with

my own research interest and others too. Hence my comment.

[Guest guest]

For me personally, I find this article helpful not because it is going to lead

immediately to a complete map of all of the contributing factors that make up

the physiology of Autism so that we might find 'answers' in the classic research

sense. I don't even expect that it will permeate the mindset of health care

practitioners. I don't even wholly agree with the simplification of suggesting

that there are two (or three or four or 10) 'types' of Autism. I feel that there

are many different underlying causal agents which can produce the myriad of

symptoms, some of which overlap- and that Autism is a true spectrum because of

the many possible combinations of these causes and expressions. That being said,

what I do REALLY like is that it is a significant research project looking into

the PHYSIOLOGY behind Autism that received mainstream coverage.

After years myself of battling the concept pushed from without that my daughter

and others with Autism are suffering from psychological disorder as opposed to

physiological disorder, everything that makes it's way to the mainstream and

marks a change in this concept is a joy to see. It is such a battle to be a

biomed parent in the midst of a sea of people beating their heads agains the

wall solely with behavioral health or other traditional therapies in the absence

of biomed support that addresses the underlying illnesses behind the disorder.

Anything that rises to the attention of mainstream media is a breakthrough in

its own right- a breakthrough in getting what all of us on the biomed path

already know out into the larger world of affected children and families. The

article is one I can share with my family practice doctor to edge him closer to

accepting the validity behind what we've been doing to get our daughter well. It

is one I can share with family who might stubbornly resist the work we've been

doing. I have the perfect example of what I mean by this. For 3 years now we've

been doing intensive dietary managment of my daughter's symptoms. At family

gathering after family gathering my mother hounded me about our restrictions.

" When are you going to add this food back in? " " I saw an article about people

becoming diabetic after going gluten free diets " , etc etc etc. Now mind you, she

saw Mia getting better. She saw the gains she was making. Still she hounded me

on diet. It was relentless. Truly unending and unbending. I patiently explained

the reasoning, gave her information, even sent somewhat approachable videos to

watch. I can't begin to imagine the time I spent patiently and gently trying to

help her accept what we were doing. To no avail. Then one morning, she was

watching Good Morning America or some other morning show that she watches

religiously every morning. The show was having a series of parents on who had

taken different approaches to Autism. This morning's mom was one who had focused

almost entirely on diet. She sat there and explained the same things I had

explained, really in no different way, and related the same gains in her son

that we had seen in our daughter. Mom called me immediately to tell me all about

it. And to applaud me for being 'ahead of the curve' and finding this out years

ago. I was grateful, but I wanted to put my hand through the wall.

So I know this is not what you meant to ask about in your post. So I'll try to

get back to what you asked about more specifically. I understand that you are in

research. On my path in biomed, personally I've had to let go of one aspect of

my scientific mind- the part where I have the desire to get to some 'point'

where I 'solve' Autism, where I 'cure' my child, where I 'know' what exactly is

going on. I feel like this is very much what you are actively still doing. And

that is applaudable also. It certainly needs to be done. But for me, with my

child growing up before my eyes, I've had to accept that the science is in a

point of infancy, and that these conclusive 'answers' are not going to come

during her developmental years. In the meantime I've got to use an approach

guided by intuition and applied with scientific method. I've got to forget

looking for 'proof' and instead look for essentially signs- commonalities with

other children's symptoms, commonalities in effective treatments, -pulling

together pieces to the puzzle of my daughter's illness. My daughter's illness

will not be fully 'defined', 'cured', and accepted as such by science in time to

give her a normal life- any more than any other complex, chronic disorders are

defined or cured, at least not by mainstream medicine, which is inherently

driven to find a single cause (or two or three causes, as is shown in the

research model of the study covered in the article) and treatment. In my opinion

biomed- in the field of Autism and in other integrative medicine practices, is

driving a change in thinking in medicine at the moment. While this evolution

happens, the best thing I can do for my daughter is keep her moving through

protocols and therapies as long as I am constantly guided by the practice of

'doing no harm'. It is a practice of scientific discovery at this point,

unfolding in our home, and while it would be wonderful to have a road map or at

least a guard rail, or heck, even a road for that matter, I am finding that the

more I let go and listen to intuition and the less I look for a well designed

double blind placebo controlled trial, the better off my daughter is. I find the

role for my scientific mind at the moment is more one of immersion in the

process of intensive scientific discovery here in our living room- observing,

hypothesizing, experimenting, reviewing research and other's experiences,

observing, hypothesizing, experimenting, reviewing research and other's

experiences- ad infinitum-- a very humbled position but one with more promise

and more that I can immediately affect and control than the position of looking

for any great all encompassing breathrough from without.

I hope I have not yarded on too much on this, but I think it addresses your

frustration?

> >

> >

> >

> > The title of the article is so misleading.. Difficult to comment from the

> > news article on the stage of research and hence how promising it is but good

> > that its one step ahead.

> >

> >

>

[Guest guest]

I don't think the point is not getting caught up in the hype. I agree that the study isn't shut a big deal *to us* but IMO, the fact that it's now coming to mainstream medicine is the big deal, not the findings. We've known the findings for a long time, we've just never had mainstream acceptance. It's a big deal because people actually listen to MIND. No one listens to the parents and doctors helping these kids...

~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~

Don't get caught up in this. My kids had big heads and immune

problems. All are recovered. Since I have seen docs report that all

their patients with autism had low Vitamin D, and low Vitamin D is

associated with big heads, this is old news. And quite frankly, have

you ever had a doc say they had a patient with autism that didn't have

immune dysfunction? Nah, never heard of it. There is lots of research

out there, so don't read too much into a study, since there are many

conflicting ones.

Love and prayers,

Heidi N

The article only states that they found two strains of autism, after

studying few hundreds of autistic kids in their phenome project. Fine, a

step forward but what is the benefit of this 'one step forward'? I searched

on this phenome website, no updates. I searched pubmed and there are some

articles which were published when the work was in progress, may be it is

still in progress as their is no final publication in a scientific journal.

So its difficult to understand how this 'one step forward' is really going

to help in 'promising answers on autism'.

Sometimes popular science writers jump to conclusions so that a layman

understands 'the point' but from a scientist's point of view, it may be

"just" one step forward and lot more to go. Have seen similar stories with

my own research interest and others too. Hence my comment.

[Guest guest]

Like. Like. Like!I'm just gonna say it. I have a huge biomed crush on . Started with the darn microscope.SylviaSent from my iPhone

For me personally, I find this article helpful not because it is going to lead immediately to a complete map of all of the contributing factors that make up the physiology of Autism so that we might find 'answers' in the classic research sense. I don't even expect that it will permeate the mindset of health care practitioners. I don't even wholly agree with the simplification of suggesting that there are two (or three or four or 10) 'types' of Autism. I feel that there are many different underlying causal agents which can produce the myriad of symptoms, some of which overlap- and that Autism is a true spectrum because of the many possible combinations of these causes and expressions. That being said, what I do REALLY like is that it is a significant research project looking into the PHYSIOLOGY behind Autism that received mainstream coverage.

After years myself of battling the concept pushed from without that my daughter and others with Autism are suffering from psychological disorder as opposed to physiological disorder, everything that makes it's way to the mainstream and marks a change in this concept is a joy to see. It is such a battle to be a biomed parent in the midst of a sea of people beating their heads agains the wall solely with behavioral health or other traditional therapies in the absence of biomed support that addresses the underlying illnesses behind the disorder. Anything that rises to the attention of mainstream media is a breakthrough in its own right- a breakthrough in getting what all of us on the biomed path already know out into the larger world of affected children and families. The article is one I can share with my family practice doctor to edge him closer to accepting the validity behind what we've been doing to get our daughter well. It is one I can share with family who might stubbornly

resist the work we've been doing. I have the perfect example of what I mean by this. For 3 years now we've been doing intensive dietary managment of my daughter's symptoms. At family gathering after family gathering my mother hounded me about our restrictions. "When are you going to add this food back in?" "I saw an article about people becoming diabetic after going gluten free diets", etc etc etc. Now mind you, she saw Mia getting better. She saw the gains she was making. Still she hounded me on diet. It was relentless. Truly unending and unbending. I patiently explained the reasoning, gave her information, even sent somewhat approachable videos to watch. I can't begin to imagine the time I spent patiently and gently trying to help her accept what we were doing. To no avail. Then one morning, she was watching Good Morning America or some other morning show that she watches religiously every morning. The show was having a series of parents on who had taken

different approaches to Autism. This morning's mom was one who had focused almost entirely on diet. She sat there and explained the same things I had explained, really in no different way, and related the same gains in her son that we had seen in our daughter. Mom called me immediately to tell me all about it. And to applaud me for being 'ahead of the curve' and finding this out years ago. I was grateful, but I wanted to put my hand through the wall.

So I know this is not what you meant to ask about in your post. So I'll try to get back to what you asked about more specifically. I understand that you are in research. On my path in biomed, personally I've had to let go of one aspect of my scientific mind- the part where I have the desire to get to some 'point' where I 'solve' Autism, where I 'cure' my child, where I 'know' what exactly is going on. I feel like this is very much what you are actively still doing. And that is applaudable also. It certainly needs to be done. But for me, with my child growing up before my eyes, I've had to accept that the science is in a point of infancy, and that these conclusive 'answers' are not going to come during her developmental years. In the meantime I've got to use an approach guided by intuition and applied with scientific method. I've got to forget looking for 'proof' and instead look for essentially signs- commonalities with other children's symptoms, commonalities in effective

treatments, -pulling together pieces to the puzzle of my daughter's illness. My daughter's illness will not be fully 'defined', 'cured', and accepted as such by science in time to give her a normal life- any more than any other complex, chronic disorders are defined or cured, at least not by mainstream medicine, which is inherently driven to find a single cause (or two or three causes, as is shown in the research model of the study covered in the article) and treatment. In my opinion biomed- in the field of Autism and in other integrative medicine practices, is driving a change in thinking in medicine at the moment. While this evolution happens, the best thing I can do for my daughter is keep her moving through protocols and therapies as long as I am constantly guided by the practice of 'doing no harm'. It is a practice of scientific discovery at this point, unfolding in our home, and while it would be wonderful to have a road map or at least a guard rail, or heck, even a road for

that matter, I am finding that the more I let go and listen to intuition and the less I look for a well designed double blind placebo controlled trial, the better off my daughter is. I find the role for my scientific mind at the moment is more one of immersion in the process of intensive scientific discovery here in our living room- observing, hypothesizing, experimenting, reviewing research and other's experiences, observing, hypothesizing, experimenting, reviewing research and other's experiences- ad infinitum-- a very humbled position but one with more promise and more that I can immediately affect and control than the position of looking for any great all encompassing breathrough from without.

I hope I have not yarded on too much on this, but I think it addresses your frustration?

> >

> >

> >

> > The title of the article is so misleading.. Difficult to comment from the

> > news article on the stage of research and hence how promising it is but good

> > that its one step ahead.

> >

> >

>

[Guest guest]

some serious smarty pants in this group..that fo sure.

I totally agree with melissa, I got to a point a couple months ago and still go there from time to time where I find myself trying to find the complete understanding of this whole autism illness my son has..I search and search..get mad at myself that I dont have more books more tests to figure out this whole thing.

I am mad I dont have more medical knowledge and try and cram everything I can into my brain until I was walking around muttering to myself the diffrent theorys I could come up with from everything from viral ,heavy metal affects ...to energy healing to you name it.

then I realized same thing. at least I think that is where melissa was going with this...we just dont have all the info. none of us do. we got instinct that is such a powerful force and not enuff people give it credit.

in the old old days before modern science medicine men would pray..then go into the wild and be drawn to the right plant for healing a certain illness. I like that idea. and I think for the most part it is working really well for me.

and ...(get ready for an eye roll) God . praying has been such a huge part . I ask God to guide me and lead me in the best direction and I listen for his signs.

channa

To: "mb12valtrex " <mb12valtrex >Sent: Tuesday, September 13, 2011 3:01 PMSubject: Re: Re: Subgroups: two biologically different strains of autism - Amaral

Like. Like. Like!

I'm just gonna say it. I have a huge biomed crush on . Started with the darn microscope.

SylviaSent from my iPhone

For me personally, I find this article helpful not because it is going to lead immediately to a complete map of all of the contributing factors that make up the physiology of Autism so that we might find 'answers' in the classic research sense. I don't even expect that it will permeate the mindset of health care practitioners. I don't even wholly agree with the simplification of suggesting that there are two (or three or four or 10) 'types' of Autism. I feel that there are many different underlying causal agents which can produce the myriad of symptoms, some of which overlap- and that Autism is a true spectrum because of the many possible combinations of these causes and expressions. That being said, what I do REALLY like is that it is a significant research project looking into the PHYSIOLOGY behind Autism that received mainstream coverage. After years myself of battling the concept pushed from without that my daughter and others with

Autism are suffering from psychological disorder as opposed to physiological disorder, everything that makes it's way to the mainstream and marks a change in this concept is a joy to see. It is such a battle to be a biomed parent in the midst of a sea of people beating their heads agains the wall solely with behavioral health or other traditional therapies in the absence of biomed support that addresses the underlying illnesses behind the disorder. Anything that rises to the attention of mainstream media is a breakthrough in its own right- a breakthrough in getting what all of us on the biomed path already know out into the larger world of affected children and families. The article is one I can share with my family practice doctor to edge him closer to accepting the validity behind what we've been doing to get our daughter well. It is one I can share with family who might stubbornly resist the work we've been doing. I have the perfect example of what I

mean by this. For 3 years now we've been doing intensive dietary managment of my daughter's symptoms. At family gathering after family gathering my mother hounded me about our restrictions. "When are you going to add this food back in?" "I saw an article about people becoming diabetic after going gluten free diets", etc etc etc. Now mind you, she saw Mia getting better. She saw the gains she was making. Still she hounded me on diet. It was relentless. Truly unending and unbending. I patiently explained the reasoning, gave her information, even sent somewhat approachable videos to watch. I can't begin to imagine the time I spent patiently and gently trying to help her accept what we were doing. To no avail. Then one morning, she was watching Good Morning America or some other morning show that she watches religiously every morning. The show was having a series of parents on who had taken different approaches to Autism. This morning's mom was one who had

focused almost entirely on diet. She sat there and explained the same things I had explained, really in no different way, and related the same gains in her son that we had seen in our daughter. Mom called me immediately to tell me all about it. And to applaud me for being 'ahead of the curve' and finding this out years ago. I was grateful, but I wanted to put my hand through the wall. So I know this is not what you meant to ask about in your post. So I'll try to get back to what you asked about more specifically. I understand that you are in research. On my path in biomed, personally I've had to let go of one aspect of my scientific mind- the part where I have the desire to get to some 'point' where I 'solve' Autism, where I 'cure' my child, where I 'know' what exactly is going on. I feel like this is very much what you are actively still doing. And that is applaudable also. It certainly needs to be done. But for me, with my child growing up

before my eyes, I've had to accept that the science is in a point of infancy, and that these conclusive 'answers' are not going to come during her developmental years. In the meantime I've got to use an approach guided by intuition and applied with scientific method. I've got to forget looking for 'proof' and instead look for essentially signs- commonalities with other children's symptoms, commonalities in effective treatments, -pulling together pieces to the puzzle of my daughter's illness. My daughter's illness will not be fully 'defined', 'cured', and accepted as such by science in time to give her a normal life- any more than any other complex, chronic disorders are defined or cured, at least not by mainstream medicine, which is inherently driven to find a single cause (or two or three causes, as is shown in the research model of the study covered in the article) and treatment. In my opinion biomed- in the field of Autism and in other integrative

medicine practices, is driving a change in thinking in medicine at the moment. While this evolution happens, the best thing I can do for my daughter is keep her moving through protocols and therapies as long as I am constantly guided by the practice of 'doing no harm'. It is a practice of scientific discovery at this point, unfolding in our home, and while it would be wonderful to have a road map or at least a guard rail, or heck, even a road for that matter, I am finding that the more I let go and listen to intuition and the less I look for a well designed double blind placebo controlled trial, the better off my daughter is. I find the role for my scientific mind at the moment is more one of immersion in the process of intensive scientific discovery here in our living room- observing, hypothesizing, experimenting, reviewing research and other's experiences, observing, hypothesizing, experimenting, reviewing research and other's experiences- ad

infinitum-- a very humbled position but one with more promise and more that I can immediately affect and control than the position of looking for any great all encompassing breathrough from without.I hope I have not yarded on too much on this, but I think it addresses your frustration? > >> >> >> > The title of the article is so misleading.. Difficult to comment from the> > news article on the stage of research and hence how promising it is but

good> > that its one step ahead.> >> >>

[Guest guest]

Don't sell yourself short there, Little Lady.You ARE a serious smarty pants..... ; ) -TammyTo: "mb12valtrex " <mb12valtrex >Sent: Tuesday, September 13, 2011 9:22 PMSubject: Re: Re: Subgroups: two biologically different strains of autism - Amaral

some serious smarty pants in this group..that fo sure.

I totally agree with melissa, I got to a point a couple months ago and still go there from time to time where I find myself trying to find the complete understanding of this whole autism illness my son has..I search and search..get mad at myself that I dont have more books more tests to figure out this whole thing.

I am mad I dont have more medical knowledge and try and cram everything I can into my brain until I was walking around muttering to myself the diffrent theorys I could come up with from everything from viral ,heavy metal affects ...to energy healing to you name it.

then I realized same thing. at least I think that is where melissa was going with this...we just dont have all the info. none of us do. we got instinct that is such a powerful force and not enuff people give it credit.

in the old old days before modern science medicine men would pray..then go into the wild and be drawn to the right plant for healing a certain illness. I like that idea. and I think for the most part it is working really well for me.

and ...(get ready for an eye roll) God . praying has been such a huge part . I ask God to guide me and lead me in the best direction and I listen for his signs.

channa

To: "mb12valtrex " <mb12valtrex >Sent: Tuesday, September 13, 2011 3:01 PMSubject: Re: Re: Subgroups: two biologically different strains of autism - Amaral

Like. Like. Like!

I'm just gonna say it. I have a huge biomed crush on . Started with the darn microscope.

SylviaSent from my iPhone

For me personally, I find this article helpful not because it is going to lead immediately to a complete map of all of the contributing factors that make up the physiology of Autism so that we might find 'answers' in the classic research sense. I don't even expect that it will permeate the mindset of health care practitioners. I don't even wholly agree with the simplification of suggesting that there are two (or three or four or 10) 'types' of Autism. I feel that there are many different underlying causal agents which can produce the myriad of symptoms, some of which overlap- and that Autism is a true spectrum because of the many possible combinations of these causes and expressions. That being said, what I do REALLY like is that it is a significant research project looking into the PHYSIOLOGY behind Autism that received mainstream coverage. After years myself of battling the concept pushed from without that my daughter and others with

Autism are suffering from psychological disorder as opposed to physiological disorder, everything that makes it's way to the mainstream and marks a change in this concept is a joy to see. It is such a battle to be a biomed parent in the midst of a sea of people beating their heads agains the wall solely with behavioral health or other traditional therapies in the absence of biomed support that addresses the underlying illnesses behind the disorder. Anything that rises to the attention of mainstream media is a breakthrough in its own right- a breakthrough in getting what all of us on the biomed path already know out into the larger world of affected children and families. The article is one I can share with my family practice doctor to edge him closer to accepting the validity behind what we've been doing to get our daughter well. It is one I can share with family who might stubbornly resist the work we've been doing. I have the perfect example of what I

mean by this. For 3 years now we've been doing intensive dietary managment of my daughter's symptoms. At family gathering after family gathering my mother hounded me about our restrictions. "When are you going to add this food back in?" "I saw an article about people becoming diabetic after going gluten free diets", etc etc etc. Now mind you, she saw Mia getting better. She saw the gains she was making. Still she hounded me on diet. It was relentless. Truly unending and unbending. I patiently explained the reasoning, gave her information, even sent somewhat approachable videos to watch. I can't begin to imagine the time I spent patiently and gently trying to help her accept what we were doing. To no avail. Then one morning, she was watching Good Morning America or some other morning show that she watches religiously every morning. The show was having a series of parents on who had taken different approaches to Autism. This morning's mom was one who had

focused almost entirely on diet. She sat there and explained the same things I had explained, really in no different way, and related the same gains in her son that we had seen in our daughter. Mom called me immediately to tell me all about it. And to applaud me for being 'ahead of the curve' and finding this out years ago. I was grateful, but I wanted to put my hand through the wall. So I know this is not what you meant to ask about in your post. So I'll try to get back to what you asked about more specifically. I understand that you are in research. On my path in biomed, personally I've had to let go of one aspect of my scientific mind- the part where I have the desire to get to some 'point' where I 'solve' Autism, where I 'cure' my child, where I 'know' what exactly is going on. I feel like this is very much what you are actively still doing. And that is applaudable also. It certainly needs to be done. But for me, with my child growing up

before my eyes, I've had to accept that the science is in a point of infancy, and that these conclusive 'answers' are not going to come during her developmental years. In the meantime I've got to use an approach guided by intuition and applied with scientific method. I've got to forget looking for 'proof' and instead look for essentially signs- commonalities with other children's symptoms, commonalities in effective treatments, -pulling together pieces to the puzzle of my daughter's illness. My daughter's illness will not be fully 'defined', 'cured', and accepted as such by science in time to give her a normal life- any more than any other complex, chronic disorders are defined or cured, at least not by mainstream medicine, which is inherently driven to find a single cause (or two or three causes, as is shown in the research model of the study covered in the article) and treatment. In my opinion biomed- in the field of Autism and in other integrative

medicine practices, is driving a change in thinking in medicine at the moment. While this evolution happens, the best thing I can do for my daughter is keep her moving through protocols and therapies as long as I am constantly guided by the practice of 'doing no harm'. It is a practice of scientific discovery at this point, unfolding in our home, and while it would be wonderful to have a road map or at least a guard rail, or heck, even a road for that matter, I am finding that the more I let go and listen to intuition and the less I look for a well designed double blind placebo controlled trial, the better off my daughter is. I find the role for my scientific mind at the moment is more one of immersion in the process of intensive scientific discovery here in our living room- observing, hypothesizing, experimenting, reviewing research and other's experiences, observing, hypothesizing, experimenting, reviewing research and other's experiences- ad

infinitum-- a very humbled position but one with more promise and more that I can immediately affect and control than the position of looking for any great all encompassing breathrough from without.I hope I have not yarded on too much on this, but I think it addresses your frustration? > >> >> >> > The title of the article is so misleading.. Difficult to comment from the> > news article on the stage of research and hence how promising it

is but

good> > that its one step ahead.> >> >>

[Guest guest]

,Your first paragraph is spot on and thats exactly my frustration.There are various aspects going through my mind.- Overall acceptance of autism in the research field and funding agencies. This is where the disaster starts. I met one scientist working on autism telling me that premiere US govt institute that is responsible for mental health studies flatly refused funding and have no desire to fund autism studies in future.

- Conflict between the finding agencies itself. The same guy above also told me that agency XYZ told him not to apply for funding if he plans to apply to agency ABC. (Sometimes it is necessary that everyone gets a fair share of the cake.)

- Acceptance of Biomed in Autism arena - From what I understood about Biomed, its getting very close to personalized medicine. In Bock's book, healing the childhood epidemics, approx 50% children responded to the treatment in tons of various combinations. From my knowledge and understanding, it is only possible due to our genetic make up and studies like Phenome will be of HUGE help. Once Phenome publishes the result, it will be possible (hopefully) to tie to dots between Biomed and genetic make up and I am sure, Biomed will get a big acceptance in the medical arena. At the same time, it is not necessary for the parents to wait till there is a publication. I feel like some folks on the list misunderstood my point or I didn't phrased it correctly.

- Pathetic knowledge of autism in medical arena. I felt that all doctors should be made to take a license test every 5 or 10 year to check if their knowledge is updated enough..- Regarding publication of Biomed studies, please remember that all papers published are peer reviewed and our peer reviewing system isn't perfect (yeah and thats not good for us) but there are journals coming up like PLOS One where you could publish such a study. So lets hope that we will see some articles on Biomed.

Having said all that, I don't mean to say that we have to wait for publications to prove something that already works with few children but IMO it certainly helps in overall acceptance which will help funding this multifaceted disorder.

/Noel

 

For me personally, I find this article helpful not because it is going to lead immediately to a complete map of all of the contributing factors that make up the physiology of Autism so that we might find 'answers' in the classic research sense. I don't even expect that it will permeate the mindset of health care practitioners. I don't even wholly agree with the simplification of suggesting that there are two (or three or four or 10) 'types' of Autism. I feel that there are many different underlying causal agents which can produce the myriad of symptoms, some of which overlap- and that Autism is a true spectrum because of the many possible combinations of these causes and expressions. That being said, what I do REALLY like is that it is a significant research project looking into the PHYSIOLOGY behind Autism that received mainstream coverage.

After years myself of battling the concept pushed from without that my daughter and others with Autism are suffering from psychological disorder as opposed to physiological disorder, everything that makes it's way to the mainstream and marks a change in this concept is a joy to see. It is such a battle to be a biomed parent in the midst of a sea of people beating their heads agains the wall solely with behavioral health or other traditional therapies in the absence of biomed support that addresses the underlying illnesses behind the disorder. Anything that rises to the attention of mainstream media is a breakthrough in its own right- a breakthrough in getting what all of us on the biomed path already know out into the larger world of affected children and families. The article is one I can share with my family practice doctor to edge him closer to accepting the validity behind what we've been doing to get our daughter well. It is one I can share with family who might stubbornly resist the work we've been doing. I have the perfect example of what I mean by this. For 3 years now we've been doing intensive dietary managment of my daughter's symptoms. At family gathering after family gathering my mother hounded me about our restrictions. " When are you going to add this food back in? " " I saw an article about people becoming diabetic after going gluten free diets " , etc etc etc. Now mind you, she saw Mia getting better. She saw the gains she was making. Still she hounded me on diet. It was relentless. Truly unending and unbending. I patiently explained the reasoning, gave her information, even sent somewhat approachable videos to watch. I can't begin to imagine the time I spent patiently and gently trying to help her accept what we were doing. To no avail. Then one morning, she was watching Good Morning America or some other morning show that she watches religiously every morning. The show was having a series of parents on who had taken different approaches to Autism. This morning's mom was one who had focused almost entirely on diet. She sat there and explained the same things I had explained, really in no different way, and related the same gains in her son that we had seen in our daughter. Mom called me immediately to tell me all about it. And to applaud me for being 'ahead of the curve' and finding this out years ago. I was grateful, but I wanted to put my hand through the wall.

So I know this is not what you meant to ask about in your post. So I'll try to get back to what you asked about more specifically. I understand that you are in research. On my path in biomed, personally I've had to let go of one aspect of my scientific mind- the part where I have the desire to get to some 'point' where I 'solve' Autism, where I 'cure' my child, where I 'know' what exactly is going on. I feel like this is very much what you are actively still doing. And that is applaudable also. It certainly needs to be done. But for me, with my child growing up before my eyes, I've had to accept that the science is in a point of infancy, and that these conclusive 'answers' are not going to come during her developmental years. In the meantime I've got to use an approach guided by intuition and applied with scientific method. I've got to forget looking for 'proof' and instead look for essentially signs- commonalities with other children's symptoms, commonalities in effective treatments, -pulling together pieces to the puzzle of my daughter's illness. My daughter's illness will not be fully 'defined', 'cured', and accepted as such by science in time to give her a normal life- any more than any other complex, chronic disorders are defined or cured, at least not by mainstream medicine, which is inherently driven to find a single cause (or two or three causes, as is shown in the research model of the study covered in the article) and treatment. In my opinion biomed- in the field of Autism and in other integrative medicine practices, is driving a change in thinking in medicine at the moment. While this evolution happens, the best thing I can do for my daughter is keep her moving through protocols and therapies as long as I am constantly guided by the practice of 'doing no harm'. It is a practice of scientific discovery at this point, unfolding in our home, and while it would be wonderful to have a road map or at least a guard rail, or heck, even a road for that matter, I am finding that the more I let go and listen to intuition and the less I look for a well designed double blind placebo controlled trial, the better off my daughter is. I find the role for my scientific mind at the moment is more one of immersion in the process of intensive scientific discovery here in our living room- observing, hypothesizing, experimenting, reviewing research and other's experiences, observing, hypothesizing, experimenting, reviewing research and other's experiences- ad infinitum-- a very humbled position but one with more promise and more that I can immediately affect and control than the position of looking for any great all encompassing breathrough from without.

I hope I have not yarded on too much on this, but I think it addresses your frustration?

> >

> >

> >

> > The title of the article is so misleading.. Difficult to comment from the

> > news article on the stage of research and hence how promising it is but good

> > that its one step ahead.

> >

> >

>

[Guest guest]

No, the fact that children responded to the treatment in tons of various combinations is not possible just because of different genetic makeup, but because different factors cause symptoms of autism, and in different ways. Even if the major factors are the same in some kids, there will be different co-factors involved in various children, and those secondary factors can also be exogenous (ie nothing to do with genetic makeup). Natasa > > > >> > > >> > > >> > > > The title of the article is so misleading.. Difficult to comment from> > the> > > > news article on the stage of research and hence how promising it is but> > good> > > > that its one step ahead.> > > >> > > >> > >> >>

[Guest guest]

I think its a step in the right direction, even though they dont know how to

resolve the situation. Think of it this way, this research can give autism a

PHYSICAL DISEASE/DYSFUNCTION status in the medical world, which means that

INSURANCE companies will have to cover for any and all of the therapies

associated with autism.

I think its great and i think we should take this study to our doctor's office.

Noel, they have been doing some research on autism medicines. Google

Curemark's CM-AT for autism. I was late in enrolling my child into this trial as

they were recruiting right next to where we live.

>

> > Don't get caught up in this. My kids had big heads and immune

> > problems. All are recovered. Since I have seen docs report that all

> > their patients with autism had low Vitamin D, and low Vitamin D is

> > associated with big heads, this is old news. And quite frankly, have

> > you ever had a doc say they had a patient with autism that didn't have

> > immune dysfunction? Nah, never heard of it. There is lots of research

> > out there, so don't read too much into a study, since there are many

> > conflicting ones.

> >

> > Love and prayers,

> >

> > Heidi N

> >

> > The article only states that they found two strains of autism, after

> > studying few hundreds of autistic kids in their phenome project. Fine, a

> > step forward but what is the benefit of this 'one step forward'? I searched

> > on this phenome website, no updates. I searched pubmed and there are some

> > articles which were published when the work was in progress, may be it is

> > still in progress as their is no final publication in a scientific journal.

> > So its difficult to understand how this 'one step forward' is really going

> > to help in 'promising answers on autism'.

> >

> > Sometimes popular science writers jump to conclusions so that a layman

> > understands 'the point' but from a scientist's point of view, it may be

> > " just " one step forward and lot more to go. Have seen similar stories with

> > my own research interest and others too. Hence my comment.

> >

>