Hope and False Hope

25 Nov

Hope. It’s a wonderful thing, and something that parents of children with autism deserve to have in their lives. Fortunately, science shows that there is very good reason for hope. It shows that children with autism continue to learn and develop throughout their lives. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2765385/
http://www.ncbi.nlm.nih.gov/pubmed/15666341

But false hope is another matter. As we saw in my guest blog Truth and Consequences – The Anti-Vaccination Movement Exacts a Price from last year, “biomedical support groups” for autism, so prevalent and so active on the internet, provide a sense of hope and community for parents of children with ASD. But, that hope is not real. The case of “Mary” and her son “Saul” illustrates this – Mary joined a multitude of groups, and tried dozens of “treatments” only to be left poorer. And her child, at age 8, had not “recovered”, but still exhibited many of the challenging behaviors which he had at age 2.

Mary is a bit unusual because she has persisted with “biomedical autism treatments” for 6 years. The typical cycle of membership on such “biomedical support groups” is much shorter. A new parent joins, and attempts to follow the protocol or the advice of the other parents, but if this approach does not help their child, the parent simply abandons the group, usually without comment. However, there are always newly diagnosed children, so one sees a continuous influx of new parent members, asking the “newby” questions. Typically, there is a core of self-proclaimed “go-to” people in the group who have devoted themselves to advising these parents.

The purpose of this blog post is to introduce you to one such “go-to” person, a woman called Dana, a resident of California, and the owner of a website http://www.danasview.net.

Here’s how Dana describes herself:

Hello, my name is Dana and I am 41 years old. I am an attorney, I am married, and I have four children. I homeschool all four of my children, and I do legal work part time from home.
When my second child was diagnosed with autism at age 3, I began searching the internet to learn more about him and who he is, and I was surprised to discover that I also qualified as AS, which I will use here to refer to Autistic Syndrome although I am aware it is used for other uses as well. My third child would probably qualify as PDD, but I have not pursued an official diagnosis for him. My first and fourth child are NT.

Notice that Dana makes it clear that she has no medical background, and she is always careful never to present herself as a medical professional. Nevertheless, she has a lot of credibility on the “autism biomedical support groups”. The reason for this credibility is that she is supposed to have “recovered” her second child, or rather both her second and third children. Here is how she describes her second child in 2001 when he was 5 or 6:

My son’s pedneuro told me that he was very low functioning, never developed at all, classic genetic Kanner’s autism, that my best hope for him would be assisted living in a group home some day. Now my son no longer qualifies as autistic, he will be productive and independent some day, and all of it is because of information I read in books and on the internet. Keep going, you are doing the right thing, as you now know!

Wow! a child who no longer qualifies as autistic! That was pretty impressive in 2001, and it made Dana into an authority on biomedical treatments. However, the story has changed quite a bit over the years:
2003, age 7-1/2

My son was not as old as yours when I started biomedical, altho he was older than most kids I read about. He was age 4 when I started, now is age 7-1/2. When I started biomedical, he basically did not tolerate anything.

He is nearly recovered, his last issue is language delay, all his other issues are gone. Chelation was the intervention that provided the final measure of recovery. I did a few other things along the way, but with chelation he can eat all foods now with no problems, he never has a yeast issue any more, stims only very occasionally and voluntarily stops almost immediately. He is now working on catching up with his language delay.

2006, age 10

My son has a Kanner dx, autistic from birth. In reality, he was injured from my dental amalgams plus HepB vax at birth. I chelated him with ALA, and he is almost biomedically recovered now [chelation being one part of that recovery]. Still developmentally delayed, but catching up.

2008, age 12

Well, when he was 3, the pedneuro told me he would never talk or even acknowledge my existence. Today he is 12 and just completed a first grade program. He talks, he reads, he does simple math, he loves giving me hugs, he calls us “mommy” and “daddy” and says “I love you” and lots of other things. He plays well with his siblings, defends them when we gang up on them to tickle them, is concerned when they get hurt, and he is the only child I have who will do his chores without prompting or complaining.

Because he is so far behind and is already 12, I don’t know if he will be age appropriate. But so far I am pleased with his progress. He has gone from “classic Kanner’s autism, severe, low functioning”, to not qualifying as autistic, but definitely developmentally delayed.

2010, age 14

My son has a dx of “classic Kanner’s autism, severe, low functioning”. The pedneuro who dx him, told me he would never talk or even acknowledge my existence. He said his first word at age 6, after I added digestive enzymes.

The things he needed the most for speech, were enzymes, ALA chelation, anti-virals, B vitamins especially B1 and B12, and anti-fungals. There were several other supps that were also helpful.

Today he is 14 and not yet age-appropriate, but sometimes I do need to tell him to be quiet because he is talking too much.

To me it’s clear that her second son is not actually “recovered” from ASD.

Dana is an amazingly prolific poster. When using the handle “danaatty”, between 2001-2003, she made a total of 9882 posts to just four yahoo groups, abmd, Autism-Mercury, EnzymesandAutism and GFCFKids. In 2003, she adopted the handle “danasview”, and since has made a mind-blowing 48,187 posts to just three groups, with the largest number, 23,705 posts to GFCFKids. That’s an average of 17 posts per day, every day, for 9 years!

Dana blames vaccines for her childrens’ ASD, even though she recognizes that she herself is also on the spectrum. And like most parents who blame autism on vaccines, she has an obsession with eliminating both viruses (presumably the residual measles virus from vaccination) and mercury (from thimerosal containing vaccines). There is absolutely no clinical evidence for any of her recommended protocols. Everything is based on her reputation as a parent who has “recovered” her children.

When viewed in isolation, a single piece of her advice may seem reasonable. However, a small sampling of her posts taken together shows a different story. Here are some symptoms that Dana has blamed on viruses or on viruses leaving the body:

plantar warts
molloscum contagium
yeast, which causes constipation
goopy green eye discharge
major red rash
dry patches of skin
bad case of the “chewies”
visual stims
pushing finger joints and cracking knuckles
OCD
low white blood cell count
loud talking
mouth sores
language difficulty
high fever
sore throat
runny nose
aching bones
fine bumps on chest

In Dana’s view, some symptoms of mercury poisoning are:

dilated pupils
headaches
neck pain
sinusitis
asthma
ear infections
tingling down arms/legs
urinary incontinence
jitters
restlessness
can’t sleep very well
heart palpitations or weird feelings around heart
fungus on feet
pain in jaw
ears popping
pressure in ears
pain in intestines/bowels when exercising
food intolerances
lazy eye

Conventional “autism biomedical” wisdom is that “yeast infections” are common in autism. And that “yeast infections” can result from either anti-viral “protocols” or chelation. According to Dana, some of the symptoms of “yeast” are:

symptoms of Tourette
OCD
anxiety
dark circles under eyes
squinting eyes
needing to chew things
eating plastic and rubber
persistent nail biting
redness/bumps around the mouth
sinus infection
hitting oneself
hitting one’s ears
head banging
making pig noises and snorting a lot
standing on the head
hands always in mouth
severe dandruff
biting a parent
yellow bowel movements
yellow finger nails
pee accidents
tics
crying uncontrollably for 20 minutes or more
cystic acne
constant high pitched vocal stims
non-stop talking
low grade fever
loose sounding cough
ringing in the ears
dizziness
constipation
humming
licking things
hyper and giggling
laughing hysterically
flying into a rage
sleep problems
problems falling asleep
sleep walking
teeth grinding
stinking armpits in a five year old
spinning around in circles
balance issues
chapped lips
extra bad handwriting
visual stims
sexual behavior
red ring around the anus
“spaciness”
anger and aggression,
headache
head banging
sound sensitivity [holding the hands over the ears]
climbing on furniture and jumping off
vestibular sensory issues
and
multiple personalities

It strains credulity that such a diversity of symptoms could possibly be attributed with such precision to only three causes. In fact, there are very few things Dana will NOT attribute to these three causes. For example:

Q: What can cause low white blood cell + low red blood cell count? A hematologist has performed blood tests and ruled out antibodies (lupus, rheumatoid arthritis, etc) and now wants to proceed with a bone marrow biopsy. He appears to think he has ruled out everything else and is now looking for Leukemia or Lymphoma.
Could mercury/metal exposure cause these symptoms? Anything else?

A: It is very possibly a mercury toxicity issue. May also be related to a latent virus issue.
Dana

Dana on viruses:

He had a wart that did not go away with high dose vitamin C [which eliminated a lot of cold/flu viruses in his brain], so I tried lysine, which caused more gains.

I watched a cold virus migrate into my son’s brain once. And after starting
anti-virals, I watched the viruses come out one by one.

The above four supplements (Vitamin A, vitamin C, vitamin D, and lysine) eliminated my son’s viruses, they no longer lie dormant.

Dana on food intolerance:

At my house, controlling yeast and bacteria was required to stop raging. Also, most of the SCD-legal foods my son did not tolerate. He tolerated nothing orange or green, and he did not tolerate fats until mito cocktail. That would have caused major problems for him.

Dana on short stature:

One of my kids had this problem. He needed carnitine and thyroid support.

Dana shows her knowledge of chemistry:

Arginine and lysine are “opposites”, sort of like zinc and copper. If
you suspect a herpes virus issue, definitely do NOT give arginine, it will increase the virus.

Dana on yeast:

The yeast is in his head/brain, not in his GI tract. This happened with my son for a few years. Just because you don’t see signs of yeast in the bm/GI tract, does not mean yeast is not present in other areas of the body.

With her prolific posts and her continuous flow of “biomedical autism treatment” advice for parents, Dana has established herself as a guru. She is one of the key people personally responsible for encouraging parents to subject their children to unproven and potentially dangerous experimentation. According to the Office of Dietary Supplements, consumers in the USA spent $20.3 billion on dietary supplements in 2004. Someone is getting rich on her advice.

Addendum:
In researching this story, I encountered something astonishing. Remember “Mary” and her son “Saul”? Saul is very clearly NOT recovered despite all the experimentation performed on him. The ultimate irony was to see “Saul” featured on Dana’s website, touted as an example of a chelation recovery!

70 Responses to “Hope and False Hope”

  1. lilandtedsmum November 25, 2010 at 12:54 #

    I really feel for the children involved.

    My daughter was also given a diagnosis of classic autism when she was 2.5 years old. Although her speech is still delayed she is now talking in full sentences, is able to communicate her needs, counts and does basic mathematics very confidently,can write her own name, is beginning to read, is affectionate, finds lots to laugh about and is now beginning to recognise and acknowledge her peers.

    Would I refer to my daughter as recovered? No, I wouldn’t. She is still clearly autistic but as you say, she has developed and continues to do so. What do I attribute the above improvements and developments to? Well, she has never had a single biomed treatment at any time, never been chelated etc. All of the above was achieved through hard work by her family, her speech therapists, her teachers, her support workers, her Occupational Therapists, her psych, her autism consultant and most of all her.

    So, there you have it. We have achieved the very same results using tried and tested therapies and lots of hard work and lots of play. We didn’t bankrupt ourselves in the meantime, haven’t poured any potions or powders down her throat and certainly haven’t risked her health with anything as dangerous as chelation.

    I wonder what Dana would say to that?

  2. Guest Blogger November 25, 2010 at 13:49 #

    lilandtedsmum,

    Why don’t you ask her? It’s easy to join the group Autism-Mercury – there is no approval process, and ask away. I’d suggest a throw-away e-mail address to avoid unpleasant feedback.

    Guest Blogger

  3. Joseph November 25, 2010 at 14:30 #

    So when the child was 5 or 6, he no longer qualified as autistic, and Dana stated he’d be a productive and independent individual some day. Later we learn he said his first word at age 6.

    Is this denial? Deception? Faulty recollection?

  4. isles November 25, 2010 at 16:07 #

    This is just so sad. And yet, fascinating to watch as an example of how people deal with their deeply held beliefs being disconfirmed.

    This is very much like the situation described in “When Prophecy Fails,” Leon Festinger’s case study of a group who was convinced the Earth would be destroyed on a certain date and made extensive preparations for it. When that date came and went, rather than renounce their belief, the group concluded not that they’d been incorrect but that the diligence of their preparations had averted the destruction of the Earth. People will go to impressive mental lengths to avoid confronting the idea they were wrong about something they held important.

  5. Mali November 25, 2010 at 23:44 #

    Shame on you for writing this blog against a woman who has given so much to the autism community. Dana is an inspiration to so many mothers that are facing daily challenges of having a child with autism.

  6. Joseph November 25, 2010 at 23:51 #

    Dana is an inspiration to so many mothers that are facing daily challenges of having a child with autism.

    I guess it’s not impossible to become an inspiration by means of deception. Because that is what she did, or is there another explanation?

  7. Guest Blogger November 26, 2010 at 00:44 #

    Mali,

    Why is she an inspiration? She brags about her recovered kids, but at least one of them is so not recovered. She comes across as a know-it-all, who blames everything on either viruses, yeast or heavy metals. That list of symptoms defies logic. Yeast causes both teeth-grinding and multiple personalities? You’ve got to be kidding me! And you actually believe her?

  8. lilandtedsmum November 26, 2010 at 07:38 #

    Mali,

    I’m sorry but no. Shame on HER. There is a difference between doing all that you can to support and develop your child whilst accepting their autism and being so in denial that you subject your child to any and every bit of quackery out there.

    This says so much about Dana and her lack of acceptance where her childrens’ autism is concerned. Soon her son will be an autistic adult. I wonder if he were able to look back at the things that his mother has written, at the fact that she was so desperate to “cure” him of something that is a part of who he is – I wonder how that would make him feel.

    Most dangerously though, most of what she says is utter crap with no medical/scientific backing whatsoever. Other parents who rather than accept their child’s autism are desperate to find a cure that doesn’t exist will buy into that crap out of desperation.

    I think the best thing that Dana can do for her child is to get some counselling, learn to accept him for who and what he is and enjoy what little bit of his child hood he has left.

  9. Theo November 26, 2010 at 17:30 #

    Erm… you can’t recover your child from autism because, get this and read it very carefully now…. AUTISM IS NOT A DISEASE!!!!!! It’s not like taking cough syrup and recovering from a cold!! Your child’s mind is different than the average person! Period!!!

    Therefore the child will ALWAYS, no matter how much you chelate, how many herbs you give them, how many weird shots, diets, or other experiments you put them through, will think differently, speak differently, process differently and see things differently than the rest of the population!!!

    You can’t make your child an NT!!! And why is that such a wonderful state of being anyway? How boring, to be so normal, to be so sucked in to what society tells you to be? I’ll never get depressed because I don’t fit society’s qualifications to be acceptable. Social status will never mean anything to me, and I think that is a great boon!!

    There is so much creativity, intelligence, wonderful incites, ideas, and personalities amongst us spectrumites! I would not trade the way I see the world for ANYTHING!!!

    I see nothing wrong with working with those on the spectrum to help them adjust to the world and those around them better. To help them learn how to socialize, in thier own way, and help draw them out into the world where they can share thier unquie view of things. But trying to turn someone into something they are not causes great pain!

    Think of your child for one second!! How it would feel to know that you will never measure up to what your parent wants of you! Nothing is ever good enough! Being always viewed as broken, and how you view the world is considered invalid, faulty, and wrong. How would that feel?

    I can tell you how it feels! It’s hell! No child deserves that! When I embraced my AS I became happy. Just because how I view things and go about the world is different does not make it invalid. And I find it freeing that I am not confined to the chains of the society that says you must say, think, and do things this way!

    Your child will never recover from autism because there is nothing to recover from! Thier brain will ALWAYS be wired differntly and there is nothing that is ever going to change that! Embrace the unique being your child is Mali! Don’t go against them!

    Herbs and medicine can help, but they don’t make me not autistic. They help with memory and stress and what have you, but I am still the same really as the day I came forth from my mother’s womb. Your child can improve and learn to interact with the world in a way that is unquie and wonderful.

    We are not deseased!! We are not the Black Death coming for half the population!!! Quit being so afraid of us!!!

    And as I said on another site, to other parents who have what I like to call the matyrdom complex, please come down off the bleeping cross, you are not bleeping Jesus!! Please do get over yourself, for your kid’s sake!!!

  10. Ade November 26, 2010 at 17:52 #

    I don’t think it is any of your business what she claims, she is not the only one that has used biomed to help their child, explain to me why when my child is treated for yeast his symptoms disappear, or when his bacteria was treated, he stopped being incontinent, even though conventional medicine did not think he needed treated, dana is not profiting from the posts, or you would have said she is doing it for money, what alternative have you got to offer? or are you just a critic?

  11. Kev November 26, 2010 at 18:05 #

    I think its _everyone’s_ business when someone makes outlandish claims Ade.

  12. Guest Blogger November 26, 2010 at 18:08 #

    Ade,

    How do you know that the “yeast” symptoms disappeared just because he was treated for “yeast”. They could have disappeared on their own. And which of the 56 symptoms of “yeast” listed above did he have? Actually, is there any childhood “issue” that Dana doesn’t attribute to “yeast”?

    Kids with ASD usually stop being incontinent (i.e. potty trained) when they are older than typical kids. That doesn’t mean that whatever wacky treatment you gave him helped him potty train – maybe it was just the right time for him.

    That’s why we have double blind tests of treatments. It’s to sort out those people who truly respond to the treatment from those who would have improved anyway. None of the “treatments” Dana suggests have been proven in such a test.

    My concern is with vulnerable children with ASD being stuffed full of supplements which could harm them. I don’t know whether Dana personally profits from her advice – for all you know she could have investments in a supplement manufacturer. She could be a big-supplement shill. Even if she isn’t any of those things, I’m sure she gets a personal sense of gratification for all the adulation and respect she receives on these lists.

    My alternative is having a bit of respect for your child and not treating him as damaged goods. Working with him as a person and not as a lab rat. Spending time with him doing things that will encourage socialization and learning. Being a good parent.

  13. Guest Blogger November 26, 2010 at 18:11 #

    @Theo: Yes! Thanks for saying that!

  14. Theo November 26, 2010 at 18:21 #

    My pleasure guest! Somebody has to!! Saying you recovered your kid from autism is like saying you recovered your kid from being an introvert!

  15. esattezza November 26, 2010 at 21:59 #

    Theo (and anyone else with some perspective),

    Help me out here. I’ve never fully understood the ND movement

    I mean certainly, people with autism are unique and wonderful. I have what some scientists have called a broader autism phenotype myself (not anything diagnosable, but many of the same thought patterns) and, as a scientist-in-training (grad school), I do see how that slightly different way of looking at the world can be a boon. I understand the need for society to have more acceptance of autistic individuals, and I certainly see that parents who look at their children as “broken” or “damaged” are doing more harm than good, no matter how many treatments they try.

    On the other hand, there are some people who are so severely autistic that there is little hope of them even being able to take care of themselves in adulthood.

    I know that people within the neurodiversity movement have varying opinions about the role of treatments like ABA and other things that you describe as “help[ing] them adjust to the world and those around them better. To help them learn how to socialize, in thier own way, and help draw them out into the world where they can share thier unquie view of things.” Everyone is pretty clear on their opinions of “cures” though, which you describe as trying to make them into something they’re not. Personally, my primary issue with today’s “cures” is that they’re BS, from a scientific perspective. I’m really not sure what I would think if we found a cure that actually worked (which, admittedly, would be REALLY, REALLY hard in most cases, because autism is so complex; you might be able to “cure” one aspect, but have other facets remain).

    However, for the sake of argument, take this (admittedly extreme) case:
    Rett syndrome can be literally cured in mice. This syndrome is usually caused by mutation of a single gene (MeCP2) and is extremely debilitating in most cases. However, if you restore gene function, even after symptoms arise, the Rett mice become indistinguishable from NT mice (I believe on every measure studied thus far). Obviously, these are mice and it’s gene therapy, but if we could find a way to properly deliver the correct amount of MeCP2 in humans and the recovery phenomenon held true, would you support it’s use? Does your answer change depending on the severity of the case? Why?
    Clearly, Rett Syndrome isn’t autism, but some mutations in the same gene have been associated with autism as well. What if we could counteract those?

    The following is pretty new science and replication hasn’t been published to my knowledge, so take it with a grain of salt:
    In Rett Syndrome, it appears that the brain isn’t actually wired all that differently, but instead that certain types of neurons remain immature and therefore do not make as many connections as they do in NT brains. Therefore “curing” Rett syndrome isn’t really about changing the way the brain is wired, but about allowing the neurons to mature and naturally form the connections that would already have formed in an NT brain. Does that change your opinion? What if that were true for a subset of people with autism as well?

    Thanks for your time in helping me to understand you better.

    Also, I should note that the lab I’m in is working with Rett mouse models…. which probably explains why most of my posts on here come back to that.

    Best,
    Esa

  16. Katie November 26, 2010 at 23:49 #

    I’m sorry. When did all of you do your medical research and find the exact cause for Autism? How is it that you can say 100% that a child can not be recovered from Autism? Dana is not the only mother who has said she has recovered her child. Not by far! There are millions! But, of course, these must all be bogus because you said so.
    What happened to people supporting others whether you agree or not? These children are not being hurt or tortured or abused. These children are very much loved and their parents are spending hours upon hours researching, talking to different doctors and people, and considering what is the right thing to do. Maybe you should consider opening your eyes and exercising more tolerance instead of hate.
    Whatever you are feeling inadequate about that made you single out one woman to put down and then join the group just to let her know it was going on is about you..not her.

  17. Joseph November 27, 2010 at 01:02 #

    When did all of you do your medical research and find the exact cause for Autism?

    @Katie: I don’t think it’s necessay to know the “exact cause” of autism (as if there exists such a thing) to be able to recognize bullshit when you see it.

    How is it that you can say 100% that a child can not be recovered from Autism?

    We’re not arguing that point here, and it’s not a question that has an easy answer. (It’s well known that diagnosis stability varies with age at diagnosis, and that outcomes can be pretty much anything, but it’s not clear if treatments predict diagnosis stability.)

    What we can say with good certainty is that the one child described in the post is not “recovered”, as once claimed by the parent. The post is about the integrity of a self-proclaimed woo expert.

  18. Science Mom November 27, 2010 at 03:12 #

    I’m sorry. When did all of you do your medical research and find the exact cause for Autism? How is it that you can say 100% that a child can not be recovered from Autism?

    You should turn that question back to yourself, or better, Dana. On what planet is she even remotely qualified to subject her children to the laundry list of quack nostrums? Let alone have any idea of basic biology.

    Dana is not the only mother who has said she has recovered her child. Not by far! There are millions! But, of course, these must all be bogus because you said so.

    They are testimonials, nothing more. It is recognised that a small number of children who have received an autistic diagnosis are remitted, not recovered. And guess what? There are many parents who don’t subject their children to the snake-oil ala the Danas of the world whose children developmentally progress, sometimes to the point of being remitted. More importantly, Dana’s son has not been recovered.

    What happened to people supporting others whether you agree or not? These children are not being hurt or tortured or abused. These children are very much loved and their parents are spending hours upon hours researching, talking to different doctors and people, and considering what is the right thing to do. Maybe you should consider opening your eyes and exercising more tolerance instead of hate.

    I don’t support people who, yes, are abusing their children for their own disappointment for not getting the child they expected. You absurdly expect their ‘treatments’ of their children to be patently accepted merely because they ‘research’ so much? What value does that tact have if their ‘research’ takes them down the path that Dana has gone?

    Whatever you are feeling inadequate about that made you single out one woman to put down and then join the group just to let her know it was going on is about you..not her.

    Oh no, it’s about her and those that would listen to her. Don’t act so shocked when the light of day is shone on such endeavours and it gets a very negative reaction. People like Dana obviously reside in a place that is so thick with mutual validation and reinforcement that they can’t even grasp reality any longer, nor the ethical obligation to their children.

  19. Guest Blogger November 27, 2010 at 04:34 #

    Katie,

    Dana’s second son, the one she bases her case on – you know – the Kanner’s child who she claims is now recovered. Well he’s not. The original definition of recovered is that the child is working at age-appropriate level with no support in a regular class.

    Dana’s recovered child was at age 12 just completing a 1st grade math program. That is clearly NOT recovered.

    These children are very much loved and their parents are spending hours upon hours researching, talking to different doctors and people, and considering what is the right thing to do.

    Children who were loved would have their parents spending time with THEM and not hours “researching on the internet”. Please, please, spend that time with your kid, in an honest effort to educate and connect with them.

  20. David N. Brown November 27, 2010 at 06:29 #

    Reading the menagerie of conditions referred to heavy metals etc, I was reminded of a gag I thought up for one of my original “evil possum” stories:
    “Cause of death: Lead poisoning and overdose of dihydrogen monoxide.”
    “Uh… He was shot and thrown in a river.”

    Also, on a serious note, I think, even were it can be established that someone has gone from diagnosably autistic to “normal”, it’s not accurate to say they “lost” their diagnosis. Autism is best defined as a pattern of development. As such, it applies regardless of the “end point” of that development.

  21. Guest Blogger November 27, 2010 at 14:40 #

    ScienceMom wrote:

    Oh no, it’s about her and those that would listen to her. Don’t act so shocked when the light of day is shone on such endeavours and it gets a very negative reaction. People like Dana obviously reside in a place that is so thick with mutual validation and reinforcement that they can’t even grasp reality any longer, nor the ethical obligation to their children.

    Those groups do need the light of day shone on them. It would be wonderful if a few non-acolytes joined and brought some illumination.

  22. esattezza November 27, 2010 at 15:51 #

    Those groups do need the light of day shone on them. It would be wonderful if a few non-acolytes joined and brought some illumination.

    I predict you won’t be allowed to stay long.

  23. Ade November 27, 2010 at 17:19 #

    I still maintain that my child is getting better, I have worked with qualified MD’s all along and carried out a lot of tests that shows issues with his gut, auto immune issues and bacteria issues, are you saying that because he is autistic, we should not bother to resolve all these issues, and by the way research shows that there are a lot of common medical issues with Autistic children, but your argument is that they should e ignored and the child should be left to suffer the consequences.

    Also the fact that the child is medically better does not mean there is no need for other therapies like ABA which I am doing with my child, because he would have lost a lot of ground.

    Dana’s Son may be medically recovered, but cannot become age appropriate overnight, having been at lower functioning level for years, its like not taking a child to school for 5 years and then taking him to school and expecting that somehow he will know all the things he missed.

  24. Guest Blogger November 27, 2010 at 18:04 #

    Ade,

    Thank you for your polite comment. If you look at the beginning of the blog post, you will see that it is EXPECTED that children with ASD will continue to develop as they get older. So, getting “better” behaviorally is not a surprise.

    If you mean “better” medically, and you are working with a qualified doctor to resolve actual medical issues, that is a different matter. Yes, children with ASD may have GI issues that are ignored because the child is non-verbal. GI issues are actually very common the NT children as well. No one would argue that these medical issues should be ignored, either for kids with ASD or NT kids.

    Dana’s Son may be medically recovered, but cannot become age appropriate overnight, having been at lower functioning level for years, its like not taking a child to school for 5 years and then taking him to school and expecting that somehow he will know all the things he missed.

    Please read the post again. At age 5-6 he was already considered “medically recovered” by his mother. He’s 14 now. He’s had 8-9 years to catch up, but has clearly not done so.

  25. Science Mom November 27, 2010 at 18:36 #

    I still maintain that my child is getting better, I have worked with qualified MD’s all along and carried out a lot of tests that shows issues with his gut, auto immune issues and bacteria issues, are you saying that because he is autistic, we should not bother to resolve all these issues, and by the way research shows that there are a lot of common medical issues with Autistic children, but your argument is that they should e ignored and the child should be left to suffer the consequences.

    Complete and utter strawman but a common tactic for cure proponents to take. Not one person would deny medical treatment for a valid co-morbidity. The problem is, that your ‘qualified MDs’ are more often than not, charlatans who run bogus tests, intentionally read normal tests as abnormal and happily diagnose a plethora of non-existent maladies. And even worse, curebie parents like Dana have assumed medical diagnoses and treatments for their children because they have ‘done some internet research’ and become self-proclaimed ‘autism experts’.

    Dana’s Son may be medically recovered, but cannot become age appropriate overnight, having been at lower functioning level for years, its like not taking a child to school for 5 years and then taking him to school and expecting that somehow he will know all the things he missed.

    Please stop trying to apologise for Dana. “Recovered” is to become indistinguishable from their peers and her son is not, in spite of her claim of recovery. It’s pure desperation, it’s child abuse and it must stop.

  26. Joseph November 27, 2010 at 19:42 #

    Dana’s Son may be medically recovered, but cannot become age appropriate overnight

    We could apply that reasoning to any autitic child without medical problems (most of them) i.e. they are “medically recovered”, but catching up still.

    Reality is that a teenager who is very different to his peers will, in all probability, be an adult who is very different to his peers. I’m sure it doesn’t help to pretend this is not going to be the case.

  27. daedalus2u November 27, 2010 at 19:44 #

    Esa, I have a blog post which I think might help you understand what is the opposite of the ND movement, the “curebie movement”, and why it happens.

    http://daedalus2u.blogspot.com/2010/03/physiology-behind-xenophobia.html

    What “curebies” want is for their autistic child to disappear and an NT child to appear in the autistic child’s place. The curebie parents’ desire and need for this to happen is about the curebie parents’ wants and needs and their inability to relate to an autistic child and not about the autistic child’s needs. This is fundamentally about the curbie parent being unable to relate to their autistic child as a full human being. I am not saying this to be pejorative or critical, simply to be factual so that those involved can see and understand what is happening. NTs have a more difficult time divorcing their feelings from ideas they are thinking about. People on the spectrum have a much easier time doing that. That is one of the “features” of being on the spectrum.

    The brain anatomy of the MeCP2 phenotype in RS is mostly NT. The MeCP2 changes in physiology start to occur after ~12-18 months (in humans). The anatomy and epigenetic programming that occurs before then doesn’t depend (so much) on MeCP2, it is the readout of that epigenetic programming that depends on MeCP2. The autism neuroanatomy mostly occurs in utero, during the first trimester when the number of minicolumns is fixed.

    RS is not “autism”, it is “autism-like”. It mimics some of the same behaviors as “autism” because it does have some of the same physiology.

    I think the ASD-like traits that you observe in yourself are due to having a mostly ASD-type neuroanatomy from in utero neurodevelopment, but then having a NT-type neurodevelopmental post-natal trajectory.

    I think the physiology you observe in yourself is the “opposite” of the MeCP2 phenotype, which is NT neurodevelopment in utero followed by ASD post natal development. I think what you have is ASD neurodevelopment in utero followed by NT post natal development.

    I think most of the demonstrated “genetic” causes of autism (which are simple, usually singleton and de novo) are like the MeCP2 phenotype, NT-type development in utero followed by ASD-type post natal development. I think the more common autism, which is familial (with completely impenetrable genetics), comes from ASD-type neurodevelopment in utero and ASD-type post natal development.

    I think I know the physiology behind this (and have an intervention), and I would love to communicate with you about doing experiments with such interventions on the MeCP2 mouse. I think that many of the symptoms of the MeCP2 mouse are due to low NO due to metabolic stress due to the various cells in the various tissue compartments not being “in sync” because the organism is mosaic with differential readout of methylated DNA causing differential regulation of physiology which is then not “in sync” in the various tissue compartments. Metabolic stress always shows up as low NO, and (my hypothesis) is that low NO causes development along an autism-like trajectory.

    I have read what has been published on the RS mouse (and it is great work!), and does show that the MeCP2 minus phenotype is converted to a NT phenotype on reactivation of MeCP2. What I would like to know is what happens if MeCP2 is turned off again? Does the rescued MeCP2 phenotype stay rescued or does it revert? My hypothesis is that it reverts but maybe not completely.

  28. esattezza November 27, 2010 at 20:44 #

    Daedalus,

    First, thanks for your response; I was worried my comment had gotten lost in the fray. Your article pretty much confirmed what I knew about the “curebie” movement (though I don’t tend to call it that) and the non-reality-based-community in general.

    That still doesn’t answer the meat of my questions though (and, as a researcher yourself, you may not be the best person to answer anyway). To rephrase (for anyone who would like to give me their opinion): if true recovery (not just progressing off the spectrum) in autism were actually possible with the use of therapeutics, would the ND movement see that as a bad thing? Is the major problem the fact that there currently is no “cure”, so searching tirelessly for one only serves to make an autistic child into a second-class citizen in his own family? Or is the problem that autism is seen as part of who the child is and so no one should want it to be changed? If the opinion of the ND movement is the later, why do some draw the line past ABA treatment, which still seeks to change the child, at least in his behavior? If the ND community IS against “cure” in principle, have they considered the fate of individuals who are more severely affected?

    Anyway, D2U, we had communicated a while ago (like… over a year) and you’d sent me more information about your NO research… then life got busy and I never got back to you about things. So long as your yahoo email address is still active, expect to hear from me there in the not-so-distant future. To answer one of your questions, I’m pretty sure they have knocked Mecp2 out in mice later in life and seen the same kinds of deficits as if the mouse was born without it, though I don’t think anyone’s knocked it out in an animal that had previously had it restored.

    I will certainly look into your work further, though I need to point out a major flaw in the following:

    I think that many of the symptoms of the MeCP2 mouse are due to low NO due to metabolic stress due to the various cells in the various tissue compartments not being “in sync” because the organism is mosaic with differential readout of methylated DNA causing differential regulation of physiology which is then not “in sync” in the various tissue compartments. Metabolic stress always shows up as low NO, and (my hypothesis) is that low NO causes development along an autism-like trajectory.

    You’ve overlooked the fact that rett-like symptoms are seen in MALE mice lacking Mecp2; no mosaicism. Females do seem to develop symptoms, but not until they are already in a decline from age anyway.

    One last thing, you said: “NTs have a more difficult time divorcing their feelings from ideas they are thinking about.” THANK YOU. That explains SO much… like why, when I try to explain to a “curebie” mom that the HepB vaccine she thinks caused her son to become “vaccine injured” absolutely cannot contain what she called “aborted fetus tissue DNA” because the viral proteins are cultured in yeast and not human cells, she gets all self-righteous and accuses me of attacking her personally.

    Cheers,
    Esa

  29. esattezza November 27, 2010 at 20:53 #

    Wait, I may have misread/misunderstood something: you were talking about different epigenetics in different tissues being mosaic, not necessarily Mecp2 expression. But… doesn’t this happen to a certain degree even in NT individuals? By what mechanism does lack of Mecp2 alter that?

    Also, you mentioned “The anatomy and epigenetic programming that occurs before then doesn’t depend (so much) on MeCP2, it is the readout of that epigenetic programming that depends on MeCP2.” this has bounced back and forth in the literature so many times, I’m no sure what to think anymore, but I do know my PI would disagree with that statement (depending on exactly what you mean by “so much”)

  30. Science Mom November 27, 2010 at 21:31 #

    @ Esa, I am going to blog about the new Cell papers on modelling Rett Syndrome, but avoid the ethical implications even though I do have some thoughts that you questioned. ND isn’t a monolith; it means somewhat different things to different people and I guess I would classify myself being ‘middle of the road’. There is an extreme faction that seems to parallel deaf culture in that there is an across-the-board rejection of any intervention. So to attempt to answer your question, from my perspective, I don’t see that gene therapy for Rett Syndrome is incompatible with ND. RS is a monogenetic disorder resulting in multi-system pathology (which being involved in RS research, I’m not shedding any new light here) so if it can be prevented or treated, I don’t see the ethical objection here. For better or worse, we already manipulate phenotypes to improve quality of life for those with the disorders. Where it gets dodgy is drawing the line between preventing/treating mild ‘autistic behaviours’ and severe pathologies, should research advance to that point.

  31. esattezza November 27, 2010 at 21:44 #

    @ScienceMom,
    Thanks for the input. I didn’t mean to imply the ND movement was monolithic, though I guess it did come across that way in the second iteration of my questions. I look forward to reading your blog entry. WIll it be on JustTheVax, or elsewhere? Also, with any luck, you’ll have to write a followup in a few months. My lab has some interesting results that we will probably write up early next year (and it’s killing me to not be able to say anything about them!)

  32. daedalus2u November 27, 2010 at 21:54 #

    Esa, I look forward to reconnecting.

    Epigenetic programming occurs (mostly) during differentiation. The “only” differences between differentiated cells is their epigenetic programming. Mostly that happens in the first trimester in utero when most differentiation happens. Most of that is not well understood (or much at all understood). We know it happens, but exactly how and how much … not so much.

    MeCP2 regulates the differential readout of methylated DNA by binding to it and blocking its readout in complicated ways. There are multiple degrees of differential regulation via epigenetic programming, at one extreme it means the difference between a nerve cell and a liver cell, and at the other extreme the difference between one type of liver cell and another type of liver cell. I suspect the differences can be even subtler, as in endothelial cells more or less susceptible to atherosclerosis due to the in utero epigenetic programming (the Barker hypothesis). Probably there is differential epigenetic programming in different cells of the brain, but that has not been studied much.

    My understanding (which may not be completely accurate) is that the absence of MeCP2 in some cells doesn’t much affect their differential epigenetic programming during differentiation, which is why RS females look normal until 12-18 months, but it does affect the differential readout of that epigenetically programmed DNA. The onset of symptoms in RS humans probably indicates the timing as to when epigenetic readout via MeCP2 starts to become important.

    My understanding of the “rescue” of MeCP2 -/+ mice by reactivating MeCP2 occurs not by changing the epigenetic programming of the cells. What it is doing is allowing the epigenetic programming that is already there to be differentially read out to differentially regulate the physiology of those cells. My hypothesis of how this affects the phenotype is that by resolving the metabolic stress of the mosaic metabolic regulation of tissue compartments, the NO level increases and the increased NO level results in a more normal behavioral phenotype.

    I haven’t followed the recent MeCP2 literature carefully, so my analysis might be out of date. Human males don’t get RS from MeCP2 deletion because it is lethal in utero in males (I know there are a few exceptions). As I remember there are some differences in mice and humans that relate to that difference.

  33. Prometheus November 27, 2010 at 22:13 #

    Esattezza makes an interesting claim:

    “Rett syndrome can be literally cured in mice. This syndrome is usually caused by mutation of a single gene (MeCP2) and is extremely debilitating in most cases. However, if you restore gene function, even after symptoms arise, the Rett mice become indistinguishable from NT mice (I believe on every measure studied thus far).”

    I believe he/she is referring to this study:

    Guy J et al. Reversal of Neurological Defects in a Mouse Model of Rett Syndrome. Science (2007) 315:1143-1147

    If you read the study – and all of the studies using this mouse model of Rett’s Syndrome – you’ll find that they use an lox-Stop with Cre-ER (estrogen receptor) insert to render the MECP gene non-functional. When they injected the animals with tamoxifen (an estrogen analogue), the Cre recombinase translocated to the nucleus and excised the lox-Stop insert and the MECP gene became functional.

    This same technique cannot be used to reverse Rett’s Syndrome in humans because they don’t have an intact gene with a Cre-lox insert; they have some other kind of genetic anomaly in their MECP gene(s).

    It is true that – in mice – the neurons affected in Rett’s Syndrome remain viable and can return to normal function once the MECP function is restored. However, mice are not people and there is limited information you can glean from social behaviour in mice (their social interactions are very stereotyped even when they are “neurotypical”).

    It also needs to be noted that mice have very different neural development from humans. This may at least partially explain why even after their MECP genes were restored, the mice remained completely non-verbal.

    Prometheus

  34. Liz Ditz November 27, 2010 at 22:13 #

    I regard myself as a proponent of neurodiversity in the sense that there are many different neurocognitive conditions such as autism (in all its diversity) ADHD (ditto) dyslexia dyscalculia etc. that have both challenges and strengths or advantages.

    I like to use dyslexia (or specific learning disability–reading, to use the DSM-IVtr language) as a model. Most people with dyslexia, given proper instruction with specific intensity, can learn to read–in other words, “exhibit normal behavior”. They may after adequate remediation still read more slowly than NT peers, and so may benefit from assistive technology (text->speech readers; speech->text transcription devices and so on)– require additional supports to fully use their strengths.

    As you have noted, the “neurodiversity movement” isn’t monolithic. There are no membership cards or statements of belief to be signed; there aren’t any leaders, really — just some vocal people who may or may not be supported 100% by other people. Maybe it is a mistake to call it a movement as much as a philosophy.

  35. Prometheus November 27, 2010 at 22:33 #

    I forgot to mention one other little detail: the Rett’s Syndrome mice had their genetic manipulations done as single-cell embryos (“zygotes”, technically), which is not a practical technique for dealing with human Rett’s Syndrome for reasons that I will assume are obvious.

    After birth, the only way currently to restore the MECP gene in Rett’s Syndrome is through viral vectors, which haven’t been so successful in intact humans (as opposed to blood cells or other isolated tissue). Thus, saying “it’s gene therapy” rather misses the point. It’s like saying “it’s self-sustaining terrestrial nuclear fusion” – the words come out easily enough, but the process is a wee bit more complex than it might seem.

    It’s odd that Esa works with these Rett’s Syndrome mice and yet is not aware of this. Of course, as he/she suggests, the relevant research may not have been published yet.

    Prometheus

  36. daedalus2u November 27, 2010 at 23:01 #

    Science Mom, I mention Deaf Culture in my writeup on xenophobia I linked to above.

    I think the physiology behind the curbie mindset and the Deaf Culture mindset are very similar. It is about wanting your child to be like you so that you can communicate and share emotional bonding that transcends verbal language. In Deaf Culture this can happen between deaf parents and their deaf (or hearing) child if signing is the child’s first language. In indigenous cultures, the culture can only be maintained if the next generation grows up with their first language and first culture being that of the indigenous culture. It can’t be grafted on later.

    In the case of autism, the neuroanatomy isn’t there to instantiate the NT type communication structures. There is nothing that can be done to change the neuroanatomy that is there into an NT-type neuroanatomy. The hopes of the curebies and the fears of the ND that the ASD individual can be made to disappear and an NT individual appear in their place cannot happen. Neuroanatomy only occurs via a process and to develop an NT neuroanatomy requires neurodevelopment as an NT in utero. There can be improvement and movement along the autism spectrum, but becoming NT can never happen.

    The problem that the curbies have and the problem that the ND have with curbies is that to “hate” autism, you must also hate people with autism. What curbies are doing is displacing the hatred they feel toward their ASD child onto “autism” and also onto other people with autism and also onto the ND movement. This is the most damaging aspect of the curbie mindset. Damaging to them, to their children, to the rest of society. It is that hatred that has turned some of them into delusional anti-vax haters.

    In the case of RS, correcting the effects of the MeCP2 deletion would help a lot and should be done. I think doing it genetically will be extremely challenging. It will not be a panacea. Humans are not mice. Human brains are much more complicated and much more plastic and living with RS for multiple years will result in neurodevelopmental changes that will not suddenly disappear if MeCP2 functionality is restored. Any change would be gradual and I think would be appreciated by people with RS who experience it.

    Prometheus is correct, but the reversion of the MeCP2 -/+ phenotype with restoration of MeCP2 activity in mice is quite profound and does (to me) demonstrate that the MeCP2 -/+ phenotype is not due to deletion or damage of neurons (if it was, there couldn’t be a reversion of that phenotype). To me, the reversion of the phenotype seems analogous to the temporary reversion of the ASD phenotype during acute fever in humans. My interpretation of the MeCP2 -/+ result is that it is due to a systemic effect of MeCP2 in all tissues as reflected in systemic physiology (the breathing results especially) and not due to a local effect due to MeCP2 activity in specific neurons. If it is due to a systemic effect (as the fever result in humans almost certainly is), then there may be systemic treatments that can mimic that systemic effect in the absence of gene therapy (which will be extremely difficult to implement).

    He is completely correct that any gene therapy will be extremely challenging if it is even possible. It will be many years (perhaps decades) before it is available (I am guessing, but developing viral vectors to do this in the entire brain without adverse side effect (such as giving cells that already have MeCP2 an extra dose that would be pathologic too) is going to be a big challenge). I think it means developing primate MeCP2 -/+ models with more human-like brains to test these things in longer term. That is why I think understanding any systemic effects and trying to replicate them would provide some relief a lot faster. I think this is where my NO research comes in.

  37. esattezza November 27, 2010 at 23:08 #

    Prometheus,

    Yes, that is the study I was referring to. Also, more recent paper from that group came out earlier this year. I’m sorry if I wasn’t clear enough that the methods used to reverse the Rett-like symptoms in mice couldn’t be used in humans (though I THINK there is a group attempting to restore Mecp2 through the use of a viral vector, which, in theory, could be used in humans, though with many technical hurdles, potential complications, and ethical concerns). My point remains however; restoring of gene function produced a wildtype phenotype. The genetic tools the researchers used to make that happen are somewhat irrelevant to the point that it shows Rett CAN be reversed relatively simply without having to find some way to “rewire” the brain. And no, mice aren’t humans. If we were somehow able to restore MeCP2 in humans (admittedly not very likely without serious advances in gene therapy, as MeCP2 is extremely dosage sensitive), it is entirely possible that there would be some residual symptoms.

    Also, your comment about the mice remaining “non-verbal”, while amusing and well taken, is not entirely true. Mice do make ultrasonic vocalizations in social situations and mice with the Mecp2 mutation make them less frequently and at different cues. I would have to reread the Bird (the PI, not the animal) studies to see if this aspect was assayed in their Mecp2-restored animals. Point being, while mice aren’t a perfect analogy to humans, they really are the best model we’ve got.

    In short, my discussion of Mecp2 was intended as a thought experiment. I used short-hand because the point I was trying to make was not about that specifically.

  38. Ade November 28, 2010 at 00:05 #

    Science Mom,

    I wonder why you are so against Dana and what she does, I think it is right for people who follow her advise to make that choice, like I said before, she is not hawking anything for her profit and whatever your personal problem is that makes you want to judge people who are trying to help their children, you should seek help for it. So you are telling me that the symptoms that my child displays are bogus as well? or the fact that he is improving is bogus? or that the tests carried out by the so called conventional MD’s that shows medical issues are bogus? I mean by trying to discredit Dana, you also insult the intelligence of thousands of parents that do Biomed, and you seem to be justifying something, maybe your inaction for your child or something, curious. Anyway leave people to make choices, if you can live with your choice good luck.

  39. Chris November 28, 2010 at 01:28 #

    It is because she gives false hope, and there is no real indication that all the stuff she put her child did any good.

    As far as your statement, Ade, “you also insult the intelligence of thousands of parents that do Biomed,” is not quite right. Even intelligent people get duped, and grasp at every straw of hope. The real problem are the pseudo-doctors like the Geiers, Boyd Haley, Mercola, Bradstreet, Wakefield, Buttar, Yasko and the like who make money off of these parents.

    You continued with “maybe your inaction for your child or something, curious.”, which is not called for. I remember getting that kind of odorous accusation when I was on a disability listserv for my son as I posted information showing chelation was dangerous and cranial sacral therapy was worthless. Which was ridiculous at a time when I was taking to speech therapy twice a week, going to IEP meetings, dealing with a neurologist (and later a cardiologist), a psychologist, and working with his mainstream teachers, and with his school work.

  40. Prometheus November 28, 2010 at 01:45 #

    Esattezza,

    Since you are familiar with the science behind the Rett’s Syndrome work in mice, I am even more surprised by your use of the MeCP2 restoration studies in comparison to the simplistic “biomedical” therapies recommended by “Dana”. While it might be possible to reverse Rett’s Syndrome by restoring the MeCP2 gene, vitamin B12, amino acid “supplements” and antifungals most certainly will not.

    [Note: in addition, Rett’s Syndrome appears to be unusual in that the neuronal networks are present in sufficiently normal configuration that “simply” (that word, again) restoring MeCP2 function can restore normal (for a mouse) neurological functioning (as far as we can tell).]

    Comparing to this sort of gene-level restoration to giving vitamin C or amino acids or even chelating agents and antifungals is ludicrous. I think that even the most skeptical person on this ‘blog would accept that correcting a gene dysfunction that causes autism (or sickle-cell anemia, for that matter) could, in theory, correct that disorder. However, what mechanism could you imagine that would allow vitamin B12 or duflucan or DMSA to correct a genetic or developmental error?

    Rett’s Syndrome is, in some ways, a very good “cautionary tale” for those who would “cure” (or “recover”) autism. The genetic anomaly in Rett’s Syndrome was discovered before the (potential) therapy could be proposed. What “Dana” (and thousands of others) are proposing is that we try everything in the pharmacy in order to find a “cure” at random.

    Their approach is to try something and, if it “works” (see: random events masquerading as cause and effect), dreaming up a pathology and mechanism to explain this “effect” (e.g. if DMSA “works”, then mercury or lead must be the cause of autism and their removal through chelation is the mechanism of DMSA’s effect).

    Their argument is that parents “don’t have time to wait” for proper research to find the cause(s) of autism, but the reality is that there are so many potential “cures” using the “try it and see” technique that random associations are more likely than real ones by several orders of magnitude. People can’t make informed “choices” if they have no data, so the “Dana method” is no different from walking blindfolded into the pharmacy and picking something at random.

    Ade complains:

    “…by trying to discredit Dana, you also insult the intelligence of thousands of parents that do Biomed…”

    How is that? The “thousands of parents” doing “biomed” are doing what people like Dana – who clearly has no idea what she is talking about – are recommending. How is it an insult to tell people that the advice they are following is bogus? Wouldn’t it be more of an insult to assume that the “biomed” parents are incapable of understanding the truth?

    Prometheus

  41. Joseph November 28, 2010 at 01:48 #

    I think it is right for people who follow her advise to make that choice,

    @Ade: Do you feel the same way about the advise of any charlatan, e.g. someone who claims they can cure your kid’s autism with fruit juice and prayer?

    To what extent should such people not be exposed to the light of day, and be left alone?

  42. Chris November 28, 2010 at 02:27 #

    Joseph:

    someone who claims they can cure your kid’s autism with fruit juice and prayer?

    Or an exorcism?

  43. Science Mom November 28, 2010 at 02:57 #

    Science Mom,

    I wonder why you are so against Dana and what she does, I think it is right for people who follow her advise to make that choice…

    @ Ade, name one thing that Dana has subjected her child to that is medically warranted and related to the laundry list of ‘symptoms’ she has listed. Name one relevant medical degree and certification that Dana has (and isn’t considered fringe).

    she is not hawking anything for her profit and whatever your personal problem is that makes you want to judge people who are trying to help their children, you should seek help for it.

    She is being heaped with validation, that’s enough personal gain to warrant suspicion. My problem is rationality and a strong sense of ethics, what ‘help’ do you suggest one seek for my ‘problem’?

    So you are telling me that the symptoms that my child displays are bogus as well? or the fact that he is improving is bogus? or that the tests carried out by the so called conventional MD’s that shows medical issues are bogus?

    What are the symptoms, tests, diagnoses and treatments that you have observed or done?

    I mean by trying to discredit Dana, you also insult the intelligence of thousands of parents that do Biomed…

    If the shoe fits. I can certainly understand the allure of biomed pushers and their promise of recovery but the sheer magnitude and length of time that Dana has been ‘recovering’ her unrecovered child is not only absurd but pathological.

    and you seem to be justifying something, maybe your inaction for your child or something, curious. Anyway leave people to make choices, if you can live with your choice good luck.

    I’m sure you would need to believe something like that in order to justify your choices and convince yourself of some kind of superiority but no, I’m perfectly happy and guilt-free with my choices.

  44. Esattezza November 28, 2010 at 05:36 #

    Ah, Prometheus, suddenly it all makes sense. I’ve felt like you’ve been mildly antagonistic towards me since we began our conversation.

    You write: “Since you are familiar with the science behind the Rett’s Syndrome work in mice, I am even more surprised by your use of the MeCP2 restoration studies in comparison to the simplistic “biomedical” therapies recommended by “Dana”.”

    I encourage you to go back and re-read my first post. It was never my intention to compare biomed to the potential for Rett therapies in the way that you are implying. In fact, I even say “Personally, my primary issue with today’s “cures” is that they’re BS, from a scientific perspective. I’m really not sure what I would think if we found a cure that actually worked.”

    Admittedly, my post was a bit off topic from the article, but I was writing in response to the excellent post by Theo advocating for “curebie” parents to be more accepting of their children and stop trying to… well… cure them. The question I was trying to get at was: what would the more strict ND proponents advocate if actual scientific cures for autism existed? I then used the example of Rett syndrome (with its immature neurons, rather than radically altered brain structure, as evidenced by the Adrian Bird studies, among others) because I predicted the objection about the need to completely alter the way the brain functions and, therefore, fundamentally change the person.

    That’s it. I in no way intended to use the (distant) potential for a Rett therapy to somehow validate biomedical treatments, and I’m truly sorry if it came across that way. I was just trying to gain a better understanding of the neurodiversity philosophy. I’m sorry for the misunderstanding.

  45. Theo November 29, 2010 at 16:49 #

    What is severe?

    There is really no simple answer. In an assisted living place, where I use to reside, I knew someone who was considered serverly autistic. She had classic Kanner’s. I talked with those whom she had grown up with who told me about the smearing of fieces and the screaming and so forth.

    But they worked really hard with her. They found her mode of communication after alot of work to do so, and she became engaged in the world in her own way because of it. But the world does not see that. They see a woman who constantly repeats things, rocks, never looks at anyone. Doesn’t seem to see the world. But that is not the reality of her situaction.

    This girl, whom doctors said could never live on her own, provide for, or take care of herself lives in her own apartment. She cleans it, pays her bills, cooks her own food, and does it sucessfully. Alot of work went into getting her there, but she is there, and she is happy.

    She can do the very things that many curbies believe one such as her will never be able to do. People will rise or fall by the bars you set for them. Because her family believed in her, this young woman can do things the world tells her is impossible!

    The world seems convinced that it is a terrible thing to have autism. That we are all miserable, lonely, can never have relationships, etc. They think we all want to be normal. It has never crossed thier minds that we might just be happy having autism!

    I have seen in my line of work people considered severe get married, have deep friendships, etc. I have also seen those who fall. Because no one worked with them. But against.

    I don’t want any cure. I don’t need one. I am perfectly happy as I am. And there are those with severe autism who feel the same. You can’t just say that having severe autism means that they will never go very far. That is not accurate! It is also not accurate to assert whether or not they would be better off if they were cured.

    People with disabilities understand far more than given credit for. And we can go far, if we just have people believe in us and our potential!

  46. Calli Arcale November 29, 2010 at 18:10 #

    Theo — that is a wonderful post.

    Autism, and many other neurological conditions, are part of who people are. It presents certain challenges, sometimes quite massive challenges, and it would be wonderful if something could mitigate those challenges — but to “cure” the autism would be to make the person not them anymore. Sometimes, maybe that sounds desirable; consider a person who is not autistic but has some other condition which makes them vicious to everyone around them. But is it right to change a person into someone else? How much of a person’s mind represents their identity? How much manipulation of someone’s identity is ethical? There was an episode of Babylon 5, “Waiting for Gethsemane”, which explored the idea of a new sentence to replace the death penalty. People convicted of a capital crime receive “death of personality” — a telepath is brought in to erase their memories and implant a new personality which will desire to selflessly serve the very community which they had harmed. The new personality is unaware of the old one, and the one we meet on the show has been placed with a monastic order and given a fabricated set of childhood memories. This breaks down when a malicious third party manages to revive some of the previous personality’s memories, and the kind, gentle personality now occupying the mind realizes what happened and is compelled to suicide in order to atone for the crime.

    The show never does answer the question of whether or not the sentence had been just. That wasn’t the point. The point was to ask the question.

    I have a daughter on the spectrum. I would not want to change her. It’s part of who she is. But I would like very much to make it easier for her to succeed. Currently, she’s only on one medication for that — good ol’ Ritalin. Hopefully, like me, she will be able to discontinue it someday, once she has learned external methods of refocusing herself appropriately. I am fortunate that she is not badly affected. She is not mainstreamed at present, but the teachers, having worked with many autistic children, have enough experience to know that children like her usually are mainstreamed within a few years. No special diets required, unless there is some other reason for them. All they need is some support and a bit of help learning that which comes naturally for others.

    So to my mind, it isn’t about “cure”. It’s about helping them succeed, which really, is what parenting and teaching is all about anyway.

  47. Prometheus November 29, 2010 at 19:28 #

    Esattezza,

    I admit to misunderstanding your point and I apologize for being “mildly antagonistic”. When the Guy et al paper first came out, one of the local “alternative autism practitioners” was touting tamoxifen as an “exciting potential cure for autism” and I believe I’m still a bit sensitive about that. Again, my apologies.

    Rett’s Syndrome is a unique form of autism in that it appears to be monogenic and it does not appear to result in irreversible neurological anomalies. It is possible that other forms of autism may also be reversible, but it is also possible that even Rett’s Syndrome may not be as reversible in humans as it appears to be in mice (for that matter, we have only relatively crude measures of social interaction and communication in mice, so it may not be completely reversible in mice, either).

    Even though you didn’t intend to compare gene therapy to “biomed”, there are those who will interpret your comment to mean just that. They will read your statement – “Rett syndrome can be literally cured in mice.” – and think that you mean there is a Rett’s Syndrome “cure” that works in mice (which, you must admit, is one possible interpretation of that sentence).

    I do a lot of work with viral vectors and am aware of their promise – and their limitations. The MeCP2 gene is not forgiving of dosage anomalies, with excess copies being nearly a deleterious as missing copies; as a result, gene therapy via viral vectors would have to be extremely targeted and precise. There is hope that this will be possible in the future, but we are currently a long way from attempting gene therapy with genes that aren’t so inflexible about copy-number, let alone with MeCP2. In addition, there is no chance of gene therapy with other causes of autism until the genetic and epigenetic factors are discovered.

    And to reiterate, none of the current (or, in all liklihood, future) “biomed” treatments for autism will significantly alter the gene expression of missing or mutated genes in autism caused by MeCP2 or other genes. I realise that this isn’t what Esattezza was claiming, but it needs to be said (over and over again).

    Prometheus

  48. esattezza November 29, 2010 at 20:25 #

    Prometheus,

    Thank you for clarifying my points (and for being confident enough to admit to a misunderstanding! – you’ve been involved in enough of these discussions to know how rare can be). As I’d said, the Rett example wasn’t meant to be the focus of that post, but I’m glad we’ve gotten into the discussion. I believe that the pursuit of therapies that ameliorate (there, that’s better than “cure”, now isn’t it?) the symptoms of Rett Syndrome can serve to inform the scientific community about the more etiologically complex “PDDs”, but you are quite right to be cautious about the generalizability.

    I would be very interested in hearing more about your work, if you’re up for it. I’ll contact you directly, assuming you have an email address posted on your blog.

    Best,
    Esa

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