One of the unexpected joys of attending the IMFAR conference this year was meeting Alex Plank of Wrong Planet. I plan on writing more about Alex soon, but for the moment, let me bring you some of the interviews he did. His team is the same one that brought us the press conference. That was no small effort. They were up most of the night getting that out so fast. As you will see, Alex takes videography very seriously. As such, I would recommend playing these full screen or going to YouTube and playing them in a larger format that is afforded by out column size. It’s quality work. I love the way he’s working with various locations in these interviews.
John Robison at Imfar
David Mandell at IMFAR 2011
Clara Lajonchere, VP of Clinical Programs at IMFAR
Peter Bell of Autism Speaks – IMFAR Interview in San Diego
Now LBRB is successfully moved (with a few little bits of tidying needed her and there) I need to tell you what I did with the nearly $1000 so generously donated.
First and foremost of course I bought some new hosting. I think you’ll agree that the site feels much faster and slicker as a result of the move. Gone is the churning away and (hopefully) gone is the CPU throttling.
However, I did have some money left over so I decided that as you all had been so generous that the right thing to do was pay it forward. In that spirit I split the remaining money into three parts and donated thusly:
The Autism Science Foundation – A good deal of LBRB contributors and visitors are American so to donate to a science based autism foundation in the States seemed like a good idea. ASF do not place _any_ research monies into the blind alley of vaccines.
National Autistic Society is the UK’s leading autism charity, giving an actual voice to actual autistic people is vital and the NAS do this better than anyone else in my opinion.
Speur Ghlan are a small, recently incorporated charity based in the land of my fathers – Scotland. I know the founder well and am constantly impressed at her drive and enthusiasm for her subject matter.
The amounts involved were not huge obviously but I hope that I’ve managed to meet with your approval both in choice and reasons for choice.
Thank you once again for your generous donations to get LBRB a better home. I hope I can repay you with years more quality blogging from Sullivan and the odd bit of snark from me š
The two most common causes of autism cited among all parents was an environmental cause (51%) and/or a genetic cause (51%). Vaccines (22%) were the third most commonly believed etiological factor, followed by 20% of parents who did not know or have a guess as to what may cause autism.
This is an interesting set of results to me. I’m frequently told that the overwhelming majority of parents believe vaccines cause autism. Turns out less than a quarter do.
Also of interest was the following statement:
Vaccines are commonly cited as a cause by parents in all ethnic groups despite a clear lack of scientific evidence demonstrating a relationship between autism and either the measles, mumps, rubella (MMR) vaccine, or thimerosal containing vaccines
Wasn’t that long ago that autism anti-vaxxer supermo Rick Rollens was basically in charge of MIND. How times have changed.
A long-awaited study of autism prevalence in Korea came out today in the American Journal of Psychiatry. Most of the information we have about autism prevalence comes from the US, the UK and Europe, so many were looking at this as the āKorean Studyā. It is that, and very much more.
The title of the study is Prevalence of Autism Spectrum Disorders in a Total Population Sample. I expect the study will be gathering quite a lot of press as the results are quite remarkable. For one thing, the autism prevalence is estimated at 2.64%. That’s right, over double the current estimates in the United States and the U.K.. For another thing, most of the prevalence is for autistic students who were previously unidentified and unsupported.
Unfortunately, I was unable to obtain permission to review the article pre-embargo for discussion here on the Left Brain/Right Brain blog. Instead, I wrote about this for the Autism Science Foundation as Prevalence of Autism Spectrum Disorders in a Total Population Sample. There you will find a more thorough review of the paper, complete with questions and answers with team member Roy Richard Grinker of George Washington University. The study was led by Dr. Young Shin Kim of Yale, and includes an international team:
Young Shin Kim, M.D., Ph.D., Bennett L. Leventhal, M.D., Yun-Joo Koh, Ph.D. , Eric Fombonne, M.D. Eugene Laska, Ph.D., Eun-Chung Lim, M.A., Keun-Ah Cheon, M.D., Ph.D. ,Soo-Jeong Kim, M.D., Young-Key Kim, M.D., HyunKyung Lee, M.A., Dong-Ho Song, M.D., Roy Richard Grinker, Ph.D.
Dr. Abdirahman D. Mohamed, the chief of staff at Axis Medical Center in Minneapolis, said last month he knew of four unvaccinated Somali children who had died from measles.
This appalling news comes hot on the heels of anti-vaxxer conspiracy theorist Andrew Wakefield’s visit to the Somali community in the US to promote his fraudulent anti-MMR ‘studies’. Generation Rescue has also attended to the Somali community in Minneapolis.
Antivaccine groups have noticed. In November, J. B. Handley…wrote an open letter to āCourageous Somali Parents.ā
He warned them not to trust the state health department and suggested they slow down their childrenās shots and get exemptions to school vaccination requirements. He also offered to pay for some to attend an antivaccine conference.
All these people and groups should now reap the harvest of what they have sown. Death. Preventable death.
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.
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.
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 husbandās 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 āPaul Offitā 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 havenāt mentioned before is that I was planning to attend IMFAR even before applying for the stakeholder grant. Iāve 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?
Today, JB Handley, founder of Generation Rescue became the latest person at Age of Autism to abuse a man with a psychiatric disorder.
Shouldnāt 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 wouldnāt 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.
Todd Drezner has a new piece up on the Huffington Post: Reconsidering the Nature of Autism. He starts out by quoting the forward to one of Jenny McCarthy’s books. The forward is by alternative medical practitioner Jerry Kartzinel.
Here is what Mr. Drezner wrote in his introduction:
“Autism … steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one.” So wrote Dr. Jerry Kartzinel in the introduction to Jenny McCarthy’s bestselling “Louder Than Words.” No wonder, then, that the concept of neurodiversity– the idea that we should understand and accept autistic people as a group that thinks differently from the majority — has proven to be so controversial.
The quote takes me back. Back to when I was starting to look online for information about autism. I remember when Jenny McCarthy hit the scene. Kev responded here with his blogging. The blog might have been kevleitch.co.uk then, not LeftBrainRightBrain. I remember that Kev’s blog went down: the traffic was so high that he hit his bandwidth quota. I remember that he responded to the forward from Jerry Kartzinel. He responded with words and, a little later, with video:
I don’t bring this up just for some sort of nostalgia. But this reminds me of two major themes. First: words hurt. What Dr. Kartzinel wrote, and Jenny McCarthy published, hurt. It hurt a lot of people. It added to the stigma of autism and disability. Second: words can be powerful. Kev fought back, as did many others. How or if this was an influence on Todd Drezner, I can’t say. It influenced me as I still remember it.
We can’t sit back and let people stigmatize others, for whatever reason they may have. Kim Wombles shows that almost every day with her blog Countering. Bev did it with a humor and keen perspective on Asperger Square 8. Corina Becker is taking up the task with No Stereotypes Here. And this is just a few of the many voices, autistic and non, out there.
Having said this, I will bring up one message that I’ve felt needed to be countered for some time. Here is a screenshot of a page from the book “the Age of Autism” by Dan Olmsted and Mark Blaxill. Both write for the Age of Autism Blog (Dan Olmsted appears to be the proprietor). Mark Blaxill is a member of the organization SafeMinds. Both promote the idea of autism as vaccine injury and, more specifically, the failed mercury hypothesis. (click to enlarge)
To pull but one disturbing quote: “As one of the first parents to observe an autistic child, Muncie learned how well autism targets ‘those functions distinctly human’ “. Yes, I have spent quite a lot of time fighting bad science like the first part in that sentence: the idea that autism is new/the kids in Kanner’s study were the first autistics ever. But what about the second part: that autistics are missing or have impaired “distinctly human” functions? Yes, I’ve also responded to that sentiment in the past and I plan to continue to do so. And that is much more important than the fight against bad science.
Words hurt. Jerry Kartzinel’s words hurt. Dan Olmsted and Mark Blaxill’s words hurt. They hurt and they are wrong. Plain and simple.
Another phrase from the above paragraph: “autism brutally restricts the interests of the affected”. So say the team that has one interest: pushing mercury in vaccines as a cause of autism. A little ironic?
Back to the paragraph from “The Age of Autism”. Dan, Mark: You don’t think autistics made tools, explored the globe, invented new technologies? The sad thing is, it seems like you don’t.
Yeah, a lot of kids, kids like mine, aren’t in the world explorer/inventor categories. And even kids like mine are still as human as you or I. They are not missing anything “distinctly human”.
Let’s start with an uncomfortable fact. States have a financial incentive to underserve disabled students. Special education is expensive, and every support costs money. The Department of Education exists, in part, as a federal watchdog to ensure that states live up to their obligations under the law. And these are kids who will never pay […]
When I was young, people like my kid were institutionalized. Access to community, either in their residence or their daily activities, was limited. Which is a nice way of saying, a lot of people never saw the outside of an institution. I don’t want to go back. I don’t want to think that after I […]
NIH autism research funding has collapsed since Mr. Kennedy became HHS Secretary. I wrote about this in my open letter to the IACC. Then I got curious: are the cuts limited to autism, or is this happening across NIH? The answer: it’s everywhere, and it’s worse than I expected. Below is a graph I made […]
Secretary Kennedy has cut back on autism research, and you can act. You should act. You must act. Here are data from NIH Reporter on new NIH autism grants by fiscal year. I pro-rated the results from 2026, since the fiscal year ends in September. This graph shows only those grants which are new in each fiscal […]
Yes, this is a different topic than typical for this blog. But, let’s consider a simple and obvious lie by our president: the As is typical for this president, this project involves multiple lies. Here are but two. First, the White House would not be changed itself. Just added to. As noted in a recent […]
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