Who and What Drives Autism Research?

In the USA the National Institute of Mental Health has just launched a major new research programme into autism. It comes in three parts.

Suffer the little children?

One study will define differences—both biological and behavioral—in autistic children with diverse developmental histories. Increasingly, scientists are considering the likelihood of “autisms,” that is, multiple disorders that comprise autism. These studies seek to better define the subtypes within autism. Children with regressive autism appear to develop normal language and social skills but then lose these with the onset of autism before age 3. Non-regressive autism, the more common form of the disorder, begins early in life, possibly before birth, with evidence of subtle deficits throughout development. Children with these two forms of autism will be compared with those who have other developmental disorders, including various forms of developmental delay, as well as children with typical development. In addition, researchers will study a subset of the children in this study to investigate environmental factors that may trigger symptoms of autism.

This all seems very reasonable until you go to the detailed protocol description.

Depending on each child’s study group and age, participants may undergo the following tests and procedures:

Baseline Visit

  • Medical and developmental history, physical examination, psychological, cognitive and medical tests to assess symptoms of autism or other developmental disorders, photographs of the child’s face, collection of hair, urine and baby teeth samples. If available, hair samples from the baby’s first haircut and from the biological mother’s hair are also collected.
  • Overnight electroencephalogram (EEG; for children autism developmental delays and Rett Syndrome): A special cap with electrodes is placed on the child’s head to measure brain waves (brain electrical activity) while the child sleeps in the hospital overnight. Healthy volunteers do not undergo this procedure.
  • Magnetic resonance imaging (MRI) scan: The child stays in the scanner, lying still for 10 to 15 minutes at a time. Since it may be difficult for the child to lie still, the test may be scheduled for a time when the child is likely to be sleepy, or the child may be sedated.
  • Lumbar puncture (for some children in the autism, developmental delay and Rett Syndrome groups). This test may be done under sedation.

The only baby hair study that I am aware of purports to demonstrate that autistic children have an impaired ability to secrete mercury. As science goes it is complete junk. But that does not deter those who believe that most if not all cases of autism are actually a novel form of mercury poisoning. They sieze on the study to explain how the microscopic amounts of mercury once found in childhood vaccines containing the preservative thimerosal were able to accumulate in the brains of these children and cause their autistic behaviours. According to them if you remove the mercury via chelation you will “recover” the child from autism.

Lumbar punctures have been used by researchers looking for measles virus in the cerebral spinal fluid (CSF) of autistic children in order to prove that MMR causes autism. But as Mike Fitzpatrick points out in his book, “MMR and Autism. What parents need to know,” when lawyers acting for MMR litigants in the UK tried to have lumbar punctures carried out in the hope of finding measles virus in the CSF of the litigants’ children clinicians in the UK refused on ethical grounds. Invasive and potentially dangerous procedures should only be pursued for the benefit of the child. So they flew the children to Detroit where ethical standards are apparently lower than in the UK. Subjecting children to these procedures for research purposes is bad enough. But doing it in order to find evidence for a discredited theory is child abuse.

Because whichever country you go to you will find that public health officials are united in their opposition to the idea that mercury based preservatives or vaccines themselves are in any way responsible for autism. This is not because the entire world is in thrall to big pharma. It is because researchers have looked for a connection between autism and vaccines and have found none. The burden of proof lies with the proponents of the vaccine damage hypothesis. But until they come up with a much stronger case there is no excuse for using invasive procedures on children that have no clinical justification.

Still looking for the autism pill :-(

It may be that I am wrong and NIMH are not looking for measles in children’s CSF. They might be looking for cytokines instead. There has long been a suspicion that regressive autism could be connected to an excessive immune response, indicated by elevated levels of cytokines, that cause inflammation in the brain. This connects with the second element of the research programme.

In another study, NIMH researchers will examine the use of the antibiotic minocycline to measure its usefulness in treating regressive autism. Past research suggests that autism may be linked with changes in the immune response that cause inflammation in the brain. Minocycline has known anti-inflammatory effects and has been shown to be helpful in other brain disorders such as Huntington’s disease.

“Past research” presumably includes the 2004 study from John Hopkins University. and the more recent study from the University of Cincinnati. Regarding the John Hopkins study the BBC carried this report.

Researcher Dr Carlos Pardo-Villamizar said: “These findings reinforce the theory that immune activation in the brain is involved in autism, although it is not yet clear whether it is destructive or beneficial, or both, to the developing brain.”

Similarly, samples of cerebrospinal fluid obtained from six children with autism were also found to contain elevated levels of cytokines.

The researchers say it might eventually be possible to develop a diagnostic test for autism based on looking for signs of inflammation – and that treating this inflammation might reduce the symptoms of autism.

However, Dr Andrew Zimmerman, a paediatric neurologist at the Kennedy-Krieger Institute in Baltimore who also worked on the study, said it was possible that inflammation was produced as a result of the brain trying to combat some other process damaging to brain cells.

So we know that the inflammation occurs in some autistic children. We do not know what causes the inflammation. We do not know if it is harmful or not. It may even be beneficial. But the folks at NIMH are going to treat it anyway to see what happens.

A report in last month’s New Scientist also suggests that inflammation may interfere with normal brain development in autistic children. But it ends with this warning from Matthew Belmonte, senior research associate at the Autism Research Centre at the University of Cambridge in the UK.

“Until we know exactly what it is that causes the abnormal development of grey matter we cannot develop drug treatments.”

Unbelievable!
The final study is even more alarming. NIMH is proposing to chelate autistic children to see if it works!

NIMH will conduct a controlled study to test the efficacy and safety of chelation for children with autism spectrum disorders. However, the chelation also can remove essential mineral nutrients, such as calcium, iron, and zinc.

“Because chelation therapy is not specific for mercury alone, it is important to conduct a systematic, controlled trial to determine whether or not chelation therapy is beneficial or potentially harmful to children with autism,” says Susan Swedo, M.D., who leads the branch on pediatric behavioral research in the NIMH Division of Intramural Research Programs, where the autism studies are being conducted.

Are NIMH studying autistic children or experimenting on them? I have written to the NIMH press office as follows.

Dear Karin Lee
I am writing in relation to the following item from your recent press release.
“The third study seeks to address the widespread but unproven theory that autism may be treated successfully by chelation therapy, which seeks to remove heavy metals from the blood. Chelation is more commonly used to treat lead toxicity, but currently, many families seek the treatment to try to remove mercury and other metals from their autistic children’s blood. This practice is based on the belief that many cases of autism were caused by exposure to thimerosol, a mercury-based preservative previously used in childhood vaccines.”
I have a number of questions.

  1. Can you point me to any published research that demonstrates that autistic children do have elevated levels of heavy metals in their blood?
  2. How do you propose to recruit children to take part in the study?
  3. Will children who have already undergone chelation be eligible to take part in the study?
  4. Will you be testing children following an existing treatment protocol, e.g. one authorized by DAN! or will you be administering your own?
  5. How will you control for potential confounds from other biomedical interventions that are often carried on in parallel by parents who support chelation?

I do hope you can help me with these questions and thank you for your time and cooperation in this matter.

I will keep people informed of their response.

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19 thoughts on “Who and What Drives Autism Research?

  1. Hi Mike
    Around the world, the amount of anecdotical evidence is incredible pointing to vaccines as a COLLABORATOR in the autism symptomatology. Around the world, many parents like me, with a strong background in science and interest in ASD research and ethics, are finding totally confounding biochemical blood results in our children. Around the world, the mainstreamed science is totally disociated of the real life experiences of thousands of families.
    The situation I faced was not information-nothing- from mainstreamed medicine in practice about biomedical treatment, information about what NOT to do from non-link defenders (and some very useful about what to do educationally from autistic adults) and mainstreamed research, and some trustable information about what to search from the link proponents and some rational information about further actions.
    Where is the trustable, complete and serious-based on serious science- information about what TO DO with the available information? This is a question that today each parent and each family must find in loneless and under personal research doing finally the most responsible decission that can, finding a doctor/many doctors helping and educational resources with the information available to the family. Teachers in my country and special teachers were excellent in the advice of the educational issues. For me, I have found useful (and also non-useful) information in web/ conferences /books /published research in serious journals about autism from mainstreamed and non-mainstreamed sources and researchers. Again, the field of the greys in different degrees, as it seems to me is all in Autism.
    You presented this situation as if all has been done in thimerosal/vaccines has been done and the sad truth is that epidemiology is only a very little part of the research and it has been demonstrated to be very flawed ( since the Danish Studies to the Japan studies to others), as I have tried to present enough. The research in the transport/excretion of HM systems in ASD has only begun by serious scientists. The research to detect the exact kind of immune dysfunction in autism is in its infancy.
    I live an anecdotical evidence. not because I choose, but because the clinical evidence in my son´s was such a ton of stainlees steel on us.
    And the sad situation is that I consider , like you, that these studies are not considering the most serious science to detect heavy metals, such as it is not considering the most serious science to detect MMR potentially harming effects. NOT because I think that all these must not be studied properly, but because it not seems designed as a careful study to answer properly these questions. The questions are important, the design to answer them I do not agree but probably because of totally different reasons than you.

    MAría Luján

  2. Pingback: Who or What Drives Autism Research? More questions. « Action For Autism

  3. You know, what they’re NOW calling regressive autism is mightily similar to childhood disintegrative disorder (if you take the criteria literally anyway). And that’s rare but known since 1908 (Heller).

    So what if half the kids with ‘regressive autism’ (maybe more than half) actually have CDD?

    Because differential DX is so important for these studies and all.

  4. I am thoroughly appalled at the idea that they are allowing people to do lumbar punctures on autistic children without any good indication that it should be done. I have a really hard time believing that they’ll get Rett’s parents to cooperate in this. They don’t have the same level of insane rhetoric floating around among the parents. They tend to think that their girls are precious, not toxic empty-shells, as some parents of autistic kids seem to think of their kids.

    Maria, without the totally false information about vaccines out there, most parents would never have thought that it was vaccines that made their children autistic.

    Now some parents, I think you are included, refuse to believe that it’s possible that their child could have been autistic without vaccines. People can start to believe something and refuse to let go of the idea, no matter what, they will always believe, because they believe. I don’t believe your lab tests indicate your son was damaged by vaccines. I think you believe that your son was damaged by vaccines and that you will never believe otherwise. There are parents who are sure that there is a worldwide conspiracy to destroy children by vaccines, they are driving the antivax belief system. I think you have been caught up in that, even if you don’t believe in the whole conspiracy thing yourself.

    The human mind can work that way. I bought gasoline from a cheap gas station and the next day my car started having problems. I kept putting off getting the car fixed because I thought if I put good quality gas in it for long enough the problem would go away. But the problem stayed for a long time, and I kept thinking it had been caused by the cheap gas I bought that one time. Eventually, I took the car in to get fixed. Turned out that rats had chewed through an important wire, they were up in the engine compartment. Apparently, this is common enough here in this town with lots of rats (they are rats not squirrels) living in the roofs of houses and in trees. I had never considered such a thing. The mechanic replaced the wire… it was expensive… and the car was running fine again.

    Correlation does not equal causation. The anecdotes about vaccines are driven by talk about vaccines. I wish you would stop encouraging the blaming of vaccines, Maria, I think it’s very dangerous. I don’t think you are a bad person. I just think you are dead wrong and obsessed with the idea of vaccines causing autism.

  5. “You know, what they’re NOW calling regressive autism is mightily similar to childhood disintegrative disorder (if you take the criteria literally anyway). And that’s rare but known since 1908 (Heller).”

    Actually, to be honest, it IS CDD. Different thing. The original Wakefield study was investigating precisely that.

    “So what if half the kids with ‘regressive autism’ (maybe more than half) actually have CDD?”

    Exactly….

    “Because differential DX is so important for these studies and all.”

    Now, you can suss that out and you aren’t a clinician. Why is it that clinicians haven’t sussed that yet?! :/

  6. Camille

    I am sorry but you can not be more wrong. In fact, the overall debate has been so damaged because of personal attacks and misconsiderations ( and other kind of issues ) that you misunderstood totally my post because of your personal ideas.
    I do not think – time number 1000- that my son is autistic because of vaccines. These are your words- not mine. If you want to discuss research on pharmacovigilance on vaccines the time you want the place you want. But this is not about this.
    Unfortunately, you perhaps do nt know but over and over you are so offensive. You know enough about me to have this conclussion. At this point, I must say have a nice life and think what you want. You are not interested about what I measured, why, where and why I think the way I do- especially the last months. OK. Your privilege. But my position is so much wider and profound scientifically than the one you present- again your preconcept about me- that sincerely I can not understand you, especially because of the effort I have done to explain. I do not think you are a bad person. I do think that you are so angry about the situation- partially I understand why- that you can not have a space for the possibility of another view/interpretation/reality.

    You are so obsessed- by one time, I think I have the right to use this word- to consider ME this way- or anyone thinking different- that you do not stop in front of nothing, whatever my words of my clarifications. Again your privilege. I only can claim innocence.

    Again, I do not consider that my son was autistic BECAUSE of vaccines. Because of his genetics, I do think that he was going to be a bioaccumulator of HM, without vaccines, from all the sources of heavy metals around- that are many. Vaccines were only one point more of a long series of problems he had to deal with because of the combination of his genetics ( related to a different brain structure at least) with environment.

    Even more, I do think that ethically is wrong to perform studies such as the lumbar puncture in children. Beyond the inherent and potential of damage, I would never consider a test that I am not going to be prone to do to my own child. I do think that , if a serious scientific approach to be considered, there are a lot of other things more easy to test , and more respectful in terms of avoidance of potential damage in children, to be performed.

    About new studies on regressive vs non- regressive
    Do you know the last study ?
    J Autism Dev Disord. 2006 Aug 15
    Regression Versus No Regression in the Autistic Disorder: Developmental Trajectories. Bernabei P, Cerquiglini A, Cortesi F, D’Ardia C.

    María Luján

  7. Maria

    The point of this blog is this. “Are there sufficient reasons to think that the use of lumbar puncture, antibiotics and chelation on autistic children as part of a NIMH study will benefit those children.”

    If not, these children are being used as lab rats and that is wrong.

    Regarding vaccines, the burden of proof is with the anti-vaccine side. Krigsman has taken hundreds of ileoscopy samples over the years and still has not published. Why not? Hundreds, if not thousands of parents in the USA and UK are chelating their kids for a number of years. We are still waiting for a DAN practitioner to publish their success rate in a medical journal.

    Anecdotal evidence is not good enough. Go to the doctors and scientists who are addressing the biomed conferences and putting their powerpoint presentations on the internet and tell them to publish some decent research in a real journal that will quieten us critics. Why are you, a busy parent, responding on these blogs while Yasko, Buttar, Wakefield, Krigsman et al continue to make money out of unproven treatments and theories and avoid the argument?

    Right now, you are their spokesperson and they do not deserve you. I may think you are wrong about vaccines. But I know that you are better than them.

  8. Hi Mike
    I am not the spokeperson of other person than me. I have the privilege of high education but what I have tried to tell is that there is a non-zero posibility than the anecdotical evidence- non systematized and needed to consider by serious science- can be telling something totally different about even the people you mentioned is claiming as for sure in many cases and also for the opposite extremist position- that is claiming for sure a NO NO link.
    Respectfully, I am only talking from my personal experience.
    If you are interested, I can post some studies about antibiotics- demonstrated to have been of benefit for some children with autism, especially if bacterial infections- for example in gut- are present under serious and trustable tests. Even more, there is a recent study about the importance of probiotics in gut health that I consider of enough importance to be replicated in ASD.
    Regarding vaccines, the burden of epidemiological studies- with a lot of problems the majority -if not all- of them- is against the link. Genetic epidemiology, as I have tried to present here and other places, has not been done in ASD. and therefore is lacking.
    Looking at epigenetics and transport of HM in general is lacking in ASD- because it only being understood for NT today.
    My only point is that I am not away from your position or the majority of ND parents. In fact I am close .I share with you the concerns about a more inclusive and accepting society. I want respect and consideration of the uniqueness of my autistic son. I have a strong feeling of commitment with his life and his rights.
    What I am not in agreement is in what the present debate has evolved.
    What I do not understand is the tone of that all has been done in the topic of vaccines in general because it has not. Only one approach has demonstrated to show no link- epidemiology as it has been done with infectious diseases-, but with the knowledge of ASD at the molecular level. including genetics and environment, perhaps the approach is not the appropiate to study ASD. Anecdotical evidence is the first step to consider in any scientific approach- and I agree with you is not good enough. But must be analyzed with care and systematically. And this is not been done .
    You surprised me .
    I have not considered (never) Dr Buttar approach. I have not considered , either, the use of RNA or the Lupron protocol. I have my reservations about Dr Wakefield and Dr Krigsman, but I maintain my concern about the need of a serious approach to the issue. However, and because of my respect to other parents decisions, I prefer to explain enough my reasons privately. If you want to hear my explanation, please contact me.
    But I have never considered me a spokeperson of someone else. Only of my own ideas.
    Thank you for your consideration to my person, even if you misunderstood me.

  9. Maria – I agree with you that there IS a good reason to look into possibility that vaccines may have contributed to some issues for those children who are autistic although I do not acept the mercury militia and their idealogy that they rattle off as fact. To me there is a middle ground that should be where sensible people who are interested in more than rhetoric (from either side) are able to discuss things like this. I have a daughter with MR and a son who was diagnosed with autism when he was almost 4 because of a sudden regression. I also wondered with my history of OCD and sensory issues if there was a connection. It also appears that with OCD there may be a trigger event and that there is a certain percentage of kids with autism that have a first degree relative with OCD. So I think it is perfectly acceptable to look for connections.

    Also – I am interested personally in the auto-immune aspect of this morese than the supposed mercury connection. I have also noticed (again anecdotally) that there seems to be a number of mom with MS, lupus, RA and other CTDs. Seems like a sensible questions to ask that if mom had a auto-immune disorder (not diagnosed) and was pregnant than what effect did that have on the pregnancy? I was also told by one pharmacist about the long term antibiotic treatment that some doctors are trying on patients with RA so all this may be worthwhile to look into and not some big plot to deny that autism exists. I have also had a lumbar puncture and it sounds worse than it really is. I would not recommend it for purely research without cause but it is used many times as a tool to confirm things like MS. Which also makes me wonder why things like this were not checked for kids with sudden regression – along with checking for seizures and things like that.

    The problem though is that the mercury only types have become the supposed “spokesmen” for all parents of kids with regressive autism and the other side then labels all parents of kids with regressive autism who ask questions as being NT and incapable of understanding or accepting differences.

  10. Hi LB
    I consider that every parent is a voice, every family is a world and every child with autism is diferent. Therefore, there are as many views of autism as autistic children.
    I understand your position. I consider that I can point my disagreement-even strongly- with the tone/tactics/conclussions of parents/organisation overstating the role of thimerosal and vaccines, without being offensive. And I consider also that we, parents , must be extremely aware of potentially dangerous/ineffective/unsafe approaches. BUT this is totally different to accept the other position: that Heavy metals/vaccines have not been/ have or will have nothing to do with ASD.
    Looking at this post, I consider that the role of immune/autoimmune problems can be extremely important in a subgroup of children with autism and it is certain that , if enough clues about medical conditions like multiple sclerosis-or related- are present, under careful consideration between parents and doctors a lumbar puncture I imagine can be of help as confirmatory, always than benefit overcome the risks specially for a child ( I generally am very conservative in my ideas about tests in children). What I was talking about is in the test as a screening without other clues pointing to a medical condition that requires the test as the only way to confirm.

    My son was tested for some kind of LK and also performed a sleep EEG of 7 hours. All normal. We also screened , after a lot of search of an open mind doctor, for autoimmunity-but not CFS.
    You can find in http://www.kevinleitch.com/forum several citations on autoimmune research in autism, but perhaps you know them.
    Unfortunately in my experience, many times I talk related to my own research.- derived from personal experience- is considered such as I am the representative of someone else or defending some particular extreme, against other- and I have never done/ do/ will do this. BTW, I consider that acceptation and love are out of question in my case, therefore asking questions about ASD does not imply lack of.

    I do think that there is a need of a change in the approach that consider that we, parents of Autistic children, can have only two different extreme ideas, because many of us do not agree with them- in extreme views- and feel not represented by neither, too.

  11. Regarding the chelation study, I think NIMH’s position would be that even if they think it’s a bad idea (and I have to suppose they do), parents *are* doing it, so there’s a need to generate some hard evidence to be able to say for sure.

    Even so, it’s kind of horrifying to see hogwash getting traction at this level. Also, chelation will start getting billed as “a treatment studied by the National Institutes of Health,” even after the results are in and they show, presumably, that chelation is BS.

  12. A few points about mercury toxicity causing autism. mercury is not just present in vaccines but also in fish, the air we breathe and oftne can be the result of mercury filling in the mother passing across the placenta. It does not necessarily come up in blodd tests or hair analysis but can be locked in to the fatty tissues of the brain and spinal column where it disrupts neuronal activity. Where these depositions of mercury occur will dictate the spikes of the autistic rofile. The mercury can also reside deep withint the bone marrow where it continues to contaminate the blood. From my own personal experience I believe this scenario to be true because blood tests only revealed low levels of mercury in my son and I had been told that mercury was not an issue. Yet, I saw progress when I started to follow the protocols advocated by Drs Klinghardt and Ray. Removing heavy metals from the brain is a lengthy and precarious process an dmust be done with the utmost care, if not it can actualy make the situation worse. This is because candida feeds on mercury and must also be excreted safely from the body preparing all the organs initially for the task. Therefore before one can begin to excrete mercury the gut kidneys spleen and liver must be well prepared otherwise the mercury is reabsorbed back into the system.

  13. I too was intitially shocked when the NIH said they would be studying the effects of chelation. I figured they had lost their minds and caved in to political pressure. The more I thought about it, however; the more i wondered if this wasnt a stroke of genius. Once the governement proves that chelation is a fraud can I sue my DAN doctor. I always believed one should be careful what one wishes for. In the case of the DAN doctors will this give us the evidence to finally abolish this crap?

  14. A few points about mercury toxicity causing autism. mercury is not just present in vaccines but also in fish, the air we breathe and oftne can be the result of mercury filling in the mother passing across the placenta. It does not necessarily come up in blodd tests or hair analysis but can be locked in to the fatty tissues of the brain and spinal column where it disrupts neuronal activity.

    Which of these points are about mercury toxicity causing autism?
    How much mercury causes autism, and by what mechanism?

    Where these depositions of mercury occur will dictate the spikes of the autistic rofile.

    Can you provide explanatory scientific research for this?

    The mercury can also reside deep withint the bone marrow where it continues to contaminate the blood. From my own personal experience I believe this scenario to be true because blood tests only revealed low levels of mercury in my son and I had been told that mercury was not an issue.

    You can believe whatever you want. How does it cause autism?

    Yet, I saw progress when I started to follow the protocols advocated by Drs Klinghardt and Ray. Removing heavy metals from the brain is a lengthy and precarious process an dmust be done with the utmost care, if not it can actualy make the situation worse.

    Which chelator(s) acutally effectively remove mercury from the brain?
    Do you have any scientific evidence that removing metals (assuming it can be done), leads to cognitive improvement?

    This is because candida feeds on mercury and must also be excreted safely from the body preparing all the organs initially for the task. Therefore before one can begin to excrete mercury the gut kidneys spleen and liver must be well prepared otherwise the mercury is reabsorbed back into the system.

    How much is (re)methylated, and what amount causes autism?

  15. Thank’s Do’C.
    Those are good questions. My first thought was “How does candida feed on mercury? Shouldn’t the mercury kill the candida?

    Helen
    Dr Klinghardt has not published anything regarding mercury or autism in the scientific or medical literature. I would not trust a doctor who is trying out his theories on children before presenting them for peer review.

  16. Pingback: NIMH Chelation Study « Action For Autism

  17. “I would not trust a doctor who is trying out his theories on children before presenting them for peer review”

    What do you think mainstream neurologists are doing when they prescribe antipsychotics and other psychiatric drugs for the “off-label” use to treat autistic symptoms. They are absolutely treating these kids as experiments not based on any real substantial proof that these pharmalogical drugs help, just review the medical literature, the studies are all over the place…..

    The entire treatment of autism, whether alternative, mainstream, or research-based is one big fat experiment, no one has a clue…

    Laura

  18. Thank you Laura,
    I agree with you. I support APANA because I do not think you can drug autism out of existence either with alternative or mainstream medicine. I support autism acceptance and oppose any attempts to cure what is essentially a neurological difference.

  19. Pingback: Letter to America « Action For Autism

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