As Kev points out I chose this week to out myself. The title for my talk at IMFAR has been posted online and it was time. As part of Kev’s post, he noted that Mr. Handley made some commitments on condition that I step forward. I doubted that Mr. Handley would make good on his commitments, even going so far as to write that I didn’t think he had the integrity to do so. For those comments I offer a sincere apology. I was wrong.
On important point to make here. It wasn’t JB Handley or a regular of the Age of Autism who outed me. It was former members of the autism hub blogs in the comments for the “Bonnie Offit” piece by Mr. Handley.
On the other hand, one person with whom I have disagreed over the years figured out my name long before any of this “Bonnie Offit” mess. Rather than out me, that person emailed me with the information of how I was exposing myself. It is that person’s integrity that is the biggest lesson I have learned from these events.
Note, 5-12-2011:
Mr. Handley had made two clear commitments. (1) that he would hand over control of the domain “pauloffit.com” and (2) that he would cease his discussions against Dr. Offit. I emailed Mr. Handley:
Mr. Handley,
A few people have forwarded your piece to me today. I appreciate what you have said and I have offered a public apology on LeftBrainRightBrain for questioning your integrity in honoring your commitments.
As far as the domain pauloffit.com, you can transfer that directly to the Offits. I believe you have his contact information. If not, it can be found on his website: http://www.paul-offit.com/
He replied that he would “take care of it early next week”
That was April 29th. He never contacted Dr. Offit, and the site has been merely redesigned.
A recent Guardian Roundtable touched on an interesting subject for those of us who are responsible for children with learning difficulties. The article was written, sourced and published in the UK but I believe it applies everywhere in the world where there are children with learning difficulties.
Just 6.4% of people with learning disabilities are in paid employment and that stark statistic – and the shocking waste of financial (and human) resources behind it – formed the backdrop for a recent Guardian roundtable discussion.
This issue has its root, I believe, in the way we are led to think about our children from birth:
When it comes to setting expectations for a child with learning disabilities, things can start to go wrong the moment they are born. The roundtable heard how health staff use their “breaking bad news” training to counsel parents, leaving them with the impression that there’s not much incentive to look forward to the future.
I remember the day we received the news that our child was autistic with profound learning difficulties. There were 3 calm staff members and a box of tissues on the table. By the time we left, the tissues had been used – and although the staff were gentle, kind and wonderful people who clearly were fond of our child – they too fell into that trap of ‘breaking bad news’ mode. A mode that, by its very tenor, fulfills the expectation of _being_ bad news.
The truth is, in my opinion, that with a little effort from health care agencies we can move from:
staff at one special school who, when the issue of employment was raised, replied: “That’s not for our kids.”
to a de facto position as espoused by agencies like Remploy who are the UK’s leading provider of employment services to people with disabilities.
But we’re not anywhere near that yet. In my own experience too many parents of people with special needs are content to wallow in the comfort of ‘putting it off’ – their children are still young. But consider this – we are far longer a time adults than we are children. Our children need to learn how to function in the world. This won’t be brought about by sham cures and ideaslistic fights against a strawman army. Neither will it be brought about by those who insist on misrepresenting the nature of what autism is to all rather than some.
One speaker summed up the fundamental question underpinning the whole debate: “Do we believe that people with learning disabilities and their families are worth it?”
Are they worth the upheaval and political effort it would take to transform a system that often fails them when it come to finding work?
In any society that claims to be fair, children with learning disabilities surely deserve the same life chances as other young people, the roundtable heard. They should be encouraged to have ambition
The iPad and autism: it’s a story that has picked up a lot of momentum in the media. One person who has told the story, and told it very well, is Shannon Rosa (of Squidalicious and The Thinking Person’s Guide to Autism). Her family won an iPad in a raffle and it has been “a force for good” for her son Leo ever since. Well, Leo has an iPad 2 (which I’m sure he shares with his sisters) and Shannon is passing on the “force for good” through a raffle of her own. She goes into details on her blog in a piece: Leo’s iPad Raffle.
Here are the basic details: $10 per ticket, purchased online for a chance to win a used iPad. This is the iPad used by the Leo in the video Apple produced to commemorate year one of the iPad:
Proceeds to benefit the Autism Science Foundation as a thank you for supporting Shannon’s travel expenses to attend IMFAR this year.
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.
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