I have written in the past that I will be attending IMFAR, the International Meeting For Autism Research. I will be supported by a stakeholder travel grant from the Autism Science Foundation, for which I am very grateful. What I haven’t mentioned before is that I was planning to attend IMFAR even before applying for the stakeholder grant. I’ve been planning on attending since I submitted an abstract.
That abstract was briefly, and mistakenly, posted online so I chose that time to acknowledge my identity. As it turns out the abstracts are still under embargo and, as such, I have pulled the remainder of this article. I will repost once the embargo is lifted.
Back in 2010, Age of Autism’s Inspector Clouseau, summed up the following about Sullivan:
1) Female
2) American
3) A doctor or scientist
4) Not the parent of an autistic child.
5) Is actually Paul Offit’s wife Bonnie.
And followed up with this promise:
If you can produce a dad with a child with autism with a remarkable grasp of the medical and scientific literature who blogs under the name Sullivan, a man who has an inordinate grasp of the details of your husband’s patents, lawsuits, published studies, and web habits, I will make sure that the pauloffit.com website is given to you and your husband for good.
In fact, if you can produce this father, I promise to never, ever publicly write about or utter the name “Paul Offit” again.
I have written in the past that I will be attending IMFAR, the International Meeting For Autism Research. I will be supported by a stakeholder travel grant from the Autism Science Foundation, for which I am very grateful. What I haven’t mentioned before is that I was planning to attend IMFAR even before applying for the stakeholder grant. I’ve been planning on attending since I submitted an abstract: Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey.
The abstract in question is:
Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey. M. J. Carey
M.J. Carey, of course being LB/RB’s own Matt Carey.
So, now we turn back to JB Handley – are you ready to both hand over both the domain and your word to never mention in word or speech the name Paul Offit again JB?
Dr. Ricardo Dolmetsch is a professor at Stanford University. He is one of the keynote speakers for the IMFAR conference. Recently, Tom Insel, director of the National Institute of Mental Health interviewed Prof. Dolmetsch on his work. The video is up on the NIMH website, and I embeded it here.
I’m sure when many people read “stem cell possibilities” they are going to wonder if this is about stem cell therapy. No, there is no stem cell therapy for autism at present. What Prof. Dolmetsch is doing is taking skin cells and converting them into brain cells. He can then compare brain cells from autistic and non-autistic individuals and look for differences.
The idea is very interesting. If this method really does represent the brain cells in the individual, it would give some indication of the operation of those cells. What it probably won’t do, I suspect, is give an indication of long range connectivity or size of individual structures (e.g. corpus callosum, amygdala, etc.).
As you will hear (or read), Prof. Dolmetsch started working on autism after one of his children was diagnosed.
Here is the transcript:
Transcript
Announcer: NIH Radio… from Bethesda.
Announcer: Recently, Dr. Ricardo Dolmetsch, an associate professor of neurobiology at Stanford, spoke with National Institute of Mental Health Director Dr. Thomas Insel. Devoted to Autism Spectrum Disorder research, Dr. Dolmetsch and his colleagues have generated stem cells from children with autism allowing them to study how the brain develops in children with ASD.
Dr. Thomas Insel: I thought a good place to begin the conversation was to ask you about your interest in autism and how that happened. You’re someone who trained in calcium channels… worked on very basic problems in molecular biology and now you’re interested in autism…
Dr. Ricardo Dolmetsch: Right, when I first got to Stanford I was interested in a very basic question.. and um.. you know for a few years we worked on that and that was really exciting but it was very arcane. And then about I guess four and a half years ago, our son was diagnosed with autism. And so this really changed my…the direction of my lab. Actually, what really happened was that my wife and I got together and we thought a little bit about what we could do and we came up with a bunch of projects and one of the ideas was that we were going to just change all of our efforts and that’s how we started working on autism.
Dr. Thomas Insel: I know what you’re working on now has to do with induced pluripotent stem cells. And that’s a bit magical for many people… the idea that you can create a stem cell from skin or from some other differentiated cell. Can you explain what that is and how you think that will be helpful for studying autism?
Dr. Ricardo Dolmetsch: Our whole idea of development is that development is sort of a directional arrow. It’s kind of like spilling water. You can spill water but you can’t unspill water. And we sort of thought development went to the same way. You start out with an egg and you end up with a human- you don’t go backwards. But it turns out that that’s not quite true. So, this pioneering Japanese group led by Dr. Yamanaka developed this system that allows you to take for example skin cell or blood cell and convert it into a stem cell. And the way you do this is you introduce these four proteins that do something mysterious that nobody completely understands and it changes the cell and makes it into a stem cell. And that stem cell has the capacity to make every cell in your body including brain cells.
Dr. Thomas Insel: So you can make brain cells from the skin or blood cells of a child with autism.
Dr. Ricardo Dolmetsch: Exactly, so what this allows you to do then is you can then take.. for the very first time… you can make these tissues that you wouldn’t be able to access normally. So, so you can take the skin cells of a child with autism and you can make stem cells from those skin cells and then you can take those stem cells and you can differenciate them to generate basically little pieces of brain. And then you can analyze the development of those cells as well as their function once they’re mature and so this gives you insights that you wouldn’t have any other way.
Dr. Thomas Insel: So, when you do this in autism how do those brain cells that you derieve from skin differ in children with autism versus kids who don’t have autism.
Dr. Ricardo Dolmetsch: Well, this is something we’re still working on, right and I think we’re still at the very beginning. I think that the short answer is that we have so far only looked at a couple classes of autism and in those classes of autism we have learned something about how development is changing. So for example in one case we know that these kids are making too many cells that produce dopamine and norepinephrine. Dopamine and norepinephrine are these really important neurotransmitters that are important for motivation, attention and pleasure and for some reason these children are making too many of them and they’re turning on the pathways that generate these neurotransmitters in the wrong cells. And so, that…. I mean just knowing that gives you a target- gives you something to target therapeutically.
Dr. Thomas Insel: Is there some way in which having the stem cells the way you describe is going to help us to develop new therapeutics?
Dr. Ricardo Dolmetsch: Oh absolutely. So, so…. this is the thing, right? We need to understand what is going wrong. And things are going wrong at multiple levels. So, so… we know for example.. so the first sort of level of understanding is we have to figure out what the genes are. We’ve started to identify many of the genes. The next level of understanding is we have to understand how those genes are actually changing the function and development of the cells and that is what we are working on-what we have developed. Now, once you know what is wrong with the cells you can then look for ways to reverse that.
Dr. Thomas Insel: I can’t help but ask the question.. how you done this with your own son? Have you taken skin cells and created stem cells from him?
Dr. Ricardo Dolmetsch: We have. And we have sequences genome as well as ours. And you know, I mean, it’s um… it’s a difficult project to have in your own lab. Um… in a way.. you really want to know. And in a way you really wish.. you really hope that what you find is not too terrible. But absolutely, this is one of the motivations- not the only motivation. I think one of the things I’ve discovered in working on autism I’ve met many families – it’s been that it motivates you in a way that… you know… is difficult to explain and in a way I never would have expected when I was being trained as a very basic scientist.
Today, JB Handley, founder of Generation Rescue became the latest person at Age of Autism to abuse a man with a psychiatric disorder.
Shouldn’t we celebrate that Mr. Mnookin claims to be sober? Sure we should. Beating a heroin addiction is a laudable outcome. That being said, I sure wouldn’t hire Mr. Mnookin in one of my companies, let him watch my kids, or go to him for parenting advice. He was a garden-variety junkie who stole money from friends and family, sorry.
Give with one hand, take with the other.
I don;t ever seem to recall such vitriol for another former heroin addict. In fact, for _this_ former heroin addict, JB Handley said:
I wept when I read RFK Jr’s piece yesterday on the Huffington Post…
As far as I can tell, the only difference between Mnookin and Kennedy is that Mnookin is man enough to discuss his addiction up front and personal.
JB Handley and his ilk idolise Kennedy because he’s on their side. If Seth Mnookin had written a very different book, you can bet that his former addiction wouldn’t count for a damn thing. I wonder if JB would hire Kennedy, let him watch his kids or go to him for parenting advice? Because according to JB’s standards, Kennedy is just another garden variety junkie.
I believe both Mnookin and Kennedy deserve credit for fighting a fight that JB Handley can neither envisage nor learn from. What neither of these two men deserve is to be judged on their past. I look forward to reading an AoA article on Seth that describes what is wrong with his writings rather than what he used to do as a young man.
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The more he must defend his research, the more important he seems to consider it — so important that powerful forces have conspired and aligned against him. He said he believes that “they” — public-health officials, pharmaceutical companies — pay bloggers to plant vicious comments about him on the Web. “Because it’s always the same,” he says. “Discredited doctor Andrew Wakefield, discredited doctor Andrew Wakefield.” He also “wouldn’t be surprised” if public-health officials were inflating the number of measles mortalities…
One of the theories behind the mecury-causes-autism hypothesis was that autistics are “poor excreters”. In other words, they can’t rid their bodies of mercury in the same way as other people. The idea has never had much scientific backing. One idea has been to measure hair for metals. I have read arguments that if there is more mercury in the hair than for an average person, that means that the individual is a poor excreter. I have also read that if their is less mercury in the hair, that means that the individual is a poor excreter. I have read that if the individual has the same amount of mercury, but that other metals meet some “counting rules” that means the individual is a poor excreter. In other words, no matter what data you get, someone will tell you that your kid has a problem excreting mercury.
The question has been studied. Hair has been analyzed. Fingernails have been analyzed. Toenails have been analyzed. In the recent study, hair has been analyzed, and the researchers did a meta-analysis of past studies. Result: there is no correlation between metal content in the hair and autism.
Department of Experimental and Applied Medicine, Section of Occupational Health and Industrial Hygiene, University of Brescia, Piazzale Spedali Civili 1, 25123, Brescia, Italy, depalma@med.unibs.it.
Abstract
A cross-sectional case-control study was carried out to evaluate the concentrations of metallic elements in the hair of 44 children with diagnosis of autism and 61 age-balanced controls. Unadjusted comparisons showed higher concentrations of molybdenum, lithium and selenium in autistic children. Logistic regression analysis confirmed the role of risk factor for male gender and showed a slight association with molybdenum concentrations. Unconventional chelation and vitamin-mineral supplementation were ineffective on elemental hair concentrations. A meta-analysis including the present and previous similar studies excluded any association of autism with hair concentrations of mercury, cadmium, selenium, lithium and copper. A slight association was found for lead only, but it was very weak, as strictly dependent on the worst data from one study.
Autism is not mercury poisoning. It just isn’t. And here we have more money and more researcher time spent on a project that tells us what we already know. I’m glad to have researchers look at autism and I thank this team. But we’ve spent enough on that question, it is really time to move on.
Hyperbaric oxygen treatment (HBOT) has become a big topic in the world of CAM (complementary and alternative medicine) and autism. An upcoming parent convention with a focus on CAM is even sponsored by an HBOT company. A few papers have come out, without much clear evidence of benefit.
A recent paper looks again at HBOT. This paper has a few limitations. Amongst these: there were only 16 participants and, well, I consider papers by Thoughtful House and by Andrew Wakefield in particular to be somewhat problematic.
Jepson B, Granpeesheh D, Tarbox J, Olive ML, Stott C, Braud S, Yoo JH, Wakefield A, Allen MS.
Thoughtful House Center for Children, Austin, TX, USA.
Abstract
Hyperbaric oxygen therapy (HBOT) has been used to treat individuals with autism. However, few studies of its effectiveness have been completed. The current study examined the effects of 40 HBOT sessions at 24% oxygen at 1.3 ATA on 11 topographies of directly observed behavior. Five replications of multiple baselines were completed across a total of 16 participants with autism spectrum disorders. No consistent effects were observed across any group or within any individual participant, demonstrating that HBOT was not an effective treatment for the participants in this study. This study represents the first relatively large-scale controlled study evaluating the effects of HBOT at the level of the individual participant, on a wide array of behaviors.
One problem with HBOT studies in the past is the attempt to use a placebo like therapy. It seems to this observer at least that it would be quite easy to distinguish placebo vs. real HBOT. The current study avoids that. They took data during a baseline period, during the HBOT therapy weeks and a post-HBOT period. They found that there was no benefit.
These findings diverge considerably from those of Rossignol et al. (2009). The current study controls for the potential ‘‘washing out’’ of the effect when group data are averaged (as must be done in a between-groups design) by carefully measuring potential changes in 11 topographies of behavior over time across 16 individuals. If there was a subgroup for which HBOT was effective, it seems likely that at least one such child would have participated in the current study. The lack of an effect for any participant in the current study makes the existence of such a subgroup seem implausible.
The paper concludes:
News programs and community blogs report that many families of children with autism are using HBOT therapy. The cost of such treatment may range up to $150 per hour. Families report using anywhere from 40 to 120 h of HBOT. These hours are in lieu of other therapies such as applied behavior analysis, speech therapy, and occupational therapy and do not include travel time to the medical center where the therapy is provided. Some families purchase the chambers in order to provide therapy in their home. A number of websites focus on renting ($1,395 per month) and selling ($8,495–27,995) chambers to families. Given the financial and time-investment required for HBOT and the conflicting study outcomes to date, we cannot recommend HBOT as a treatment for autism until such time as more conclusive favorable results are demonstrated.
This study found HBOT to have no significant beneficial effect on ASD symptoms. The experimental design of the current study is of a higher rigor than those employed in previous studies which have suggested that HBOT is effective. Further, the dependent measures included were far more comprehensive than those included in previous studies; therefore it is unlikely that an effect was present which was not detected. Based upon the findings of the current study, HBOT delivered at 24% oxygen at 1.3 atmospheric is not recommended for the treatment of ASD symptoms.
My own view:
HBOT is expensive, time consuming, not effective for treating autism and will continue to be promoted heavily to parents looking for a way to help their children. There is something profoundly wrong with the world of CAM and autism if they don’t move away from therapies like HBOT.
A study is in review looking at the records of the vaccine court and, purportedly, showing that a large number of the cases compensated involve autistics. Robert Kennedy Jr. was prepared to give a press conference on the paper, but this got called off. There has been chatter about a study like this for a few years now and I’ve been curious about what the results would be. I was then curious why the chatter basically died down.
The big question I would have for the author of this study and for Mr. Kennedy should he get his press conference is: how many of these children were compensated for a residual seizure disorder following DPT vaccination?
Why ask that question? The “table” is a list of reactions which the Court will assume are vaccine-caused if they happen within the prescribed time after vaccination. The table is created with the best knowledge available at the time. What happens when the best knowledge available changes? After much deliberation, the table changes. That’s what happened to residual seizure disorders as an injury for DPT vaccines. It was part of the original table, but as new research came out showing that residual seizure disorders were not a risk from DPT vaccines, it was removed from the table.
This isn’t a small issue. The idea that residual seizure disorders could be caused following DPT vaccination are basically what created the Vaccine Act, the special Court and the rest of the program as we know it today.
As of today, there have been 2,699 cases compensated within the program. Of those, by far the largest share is due to the DPT vaccine, with 1,267 compensated claims. That’s 47%. Pretty high percentage especially when you consider the DPT (the whole cell vaccine) was discontinued 15 years ago.
Let’s say that there are a lot of cases in the court where autistics have been compensated for injury. How many of these people were compensate for what was an incorrect assumption of fault? Epilepsy is common in autistics. It is certainly reasonable to think that a number of autistics were compensated for residual seizure disorders.
It will be interesting to see how they address this question in the paper, if they address it at all. It will be interesting to see how Mr. Kennedy addresses this problem, if he addresses it at all.
If you want more details on the history, here is some of it, with some links.
DTP; P; DTP/Polio Combination; or Any Other Vaccine Containing Whole Cell Pertussis Bacteria, Extracted or Partial Cell Bacteria, or Specific Pertussis Antigen(s).
Illness, disability, injury, or condition covered: Time period for first symptom or manifestation of onset or of significant aggravation after vaccine administration:
A. Anaphylaxis or anaphylactic shock 24 hours
B. Encephalopathy (or encephalitis) 3 days
C. Shock-collapse or hypotonic-hyporesponsive collapse 3 days
D. Residual seizure disorder in accordance with subsection (b)(2) 3 days
E. Any acute complication or sequela (including death) of an illness, disability, injury, or condition referred to above which illness, disability, injury, or condition arose within the time period prescribed
Take a look at the table now for pertussis containing vaccines:
I. Tetanus toxoid-containing vaccines (e.g., DTaP, Tdap, DTP-Hib, DT, Td, TT)
A. Anaphylaxis or anaphylactic shock 1 0-4 hours
B. Brachial neuritis 6 2-28 days
C. Any acute complication or sequela (including death) of above events 4 Not applicable
It’s a lot shorter. Note specifically that “Residual seizure disorder” is now gone. Here is how residual seizure disorderwas defined:
(B) in the case of any other vaccine, the first seizure or convulsion occurred within 3 days after administration of the vaccine and 2 or more seizures or convulsions occurred within 1 year after the administration of the vaccine which were unaccompanied by fever or accompanied by a fever of less than 102 degrees Fahrenheit.
The change came in 1995. The reasons were not arbitrary, as noted here in the announcement in the Federal Register. They were working from recently published and studies:
During the process of analyzing the comments received in response to the NPRM, the Agency became aware of the imminent publication of a 10-year follow-up study to the National Childhood Encephalopathy Study (NCES) (Madge N., Diamond J., Miller D., Ross E., McManus C., Wadsworth J., Yule W. The National Childhood Encephalopathy Study: A 10-year follow-up. A report of the medical, social, behavioural and educational outcomes after serious, acute, neurologic illness in early childhood. Developmental Medicine and Child Neurology 1993; Supplement No. 68;35(7):1–118; Miller D.L., Madge N., Diamond J., Wadsworth J., Ross E. Pertussis immunization and serious acute neurological illness in children. British Medical Journal 1993; 307:1171– 1176, hereinafter ‘‘Miller study.’’).
Because the Miller study looked specifically at the relationship between vaccine administration and subsequent neurological damage, the Department determined that it should not proceed with publication of the final rule until there had been a sufficient opportunity to consider the conclusions of the new Miller study. Accordingly, the Department asked the IOM to convene a Committee for purposes of evaluating the Miller study in light of the conclusions of its initial report. On March 2, 1994, the Institute of Medicine issued a report entitled ‘‘DPT Vaccine and Chronic Nervous System Dysfunction: A New Analysis.’’
The pubmed link to the NCES study (Madge et al) is here. The Miller study is available in full here. The IOM report is here.
To pull one short quote out as to why the table changed:
The consensus of the Commission was that the original table in the statute requires modification to make it consistent with current medical and scientific knowledge regarding adverse events associated with certain vaccines.
Basically, they found that the research which had been used for the first Vaccine Injury Table was wrong to assume cause for residual seizure disorders following DPT vaccines. Again, I await the chance to see if the upcoming paper addresses this important issue. If a large number of the autistics were compensated for an injury which modern science says isn’t really an injury, the readers of the study need to know this.
IMFAR, the International Meeting For Autism Research will be held next month (May 12-14). The full scientific program is not up yet (with all the details about who is talking and when), but the preliminary program is online. You can see what sessions are focusing on and see who the keynote speakers are.
Here are some sessions which caught my eye:
Characterizing Cognition in Nonverbal Individuals with Autism: Innocation Assessment and Treatment (an invited symposium–i.e. the conference felt this was an important topic and specifically invited speakers to present their research)
Sex Differences and Females with Autism Spectrum Disorders
Interventions: Behavioral CAM and Psychopharmacology Treatments
In addition, a number of sessions have full or partial focus on adults:
Adults with Autism Spectrum Disorders: Challenges for Epidemiological and Outcome Research (another invited symposium)
Epidemiology: ASD Prevalence, Trends, and Adults with ASD
a poster session on Adults with Autism
Structural and Functional Brain Imaging in Older Children, Adolescents and Adults with ASD
If you missed it, let me draw your attention: there is a session that includes CAM–Complementary and Alternative Medicine
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