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ASAN Update on Restraint & Seclusion Legislation National Call-In Day

15 Jan

I just received the following email from Meg Evans of the Autistic Self Advocacy Network (ASAN). ASAN is working on legislation to reduce seclusion and restraints within the schools. This alert calls for action next Thursday to call your representative (should you be a U.S. citizen) to support upcoming bills.

This is another ASAN Update for bloggers in the Autistic and disability rights communities. To increase support in Congress for the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860), ASAN and APRAIS are asking disability rights advocates and others who favor the legislation to call members of Congress on Thursday, January 21st, and ask them to co-sponsor the bill. You can also help by reposting and distributing the announcement below.

As always, we encourage you to contact us with your comments, and please let us know if you would prefer to receive these announcements at a different address or to be removed from the list.

Best regards,

Meg Evans, Director of Community Liaison
Autistic Self Advocacy Network
mmevans@woh.rr.com

Here is the letter:

Dear Friends, Advocates and Community Members,

In one week, Congress will come back in session. The Autistic Self Advocacy Network (ASAN), in conjunction with the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), is asking you to join us in a National Call-In Day on Thursday, January 21st to tell your members of Congress to support the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860) introduced last month by Representatives George Miller (D-CA) and Cathy McMorris-Rodgers (R-WA) and Senator Chris Dodd (D-CT). This legislation would provide students with and without disabilities vital protections against abuse in schools. We are providing details on how to contact your members of Congress — please distribute this announcement widely.

WHAT YOU CAN DO:

Please call this coming Thursday and encourage your friends, family and coworkers to participate by dialing the Capitol Switchboard at 202-224-3121 and asking for your Congressional representative to Co-Sponsor H.R. 4247, and your senators to Co-Sponsor S. 2860.

To find out the names of your US Senators and Representative, click here (link to www.congress.org)
Ask for the offices of your US Senators and Representative
Ask to speak to the person working on education issues
Identify yourself as a constituent and the organization that you represent (if any)

Message: ” I am calling to urge (Senator y) to cosponsor S.2860, legislation preventing harmful use of restraint and seclusion in schools.”

Message: “I am calling to urge (Representative z) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools.”

Thanks for your advocacy. Increasing congressional support for these bills will help move them through the legislative process towards enactment. Please call on January 21, 2010 and tell your friends and family to join you. If you are interested in doing more, please e-mail us at info@autisticadvocacy.org for information about how you can arrange a meeting with your representatives to explain why this bill is essential or visit www.tash.org/aprais to learn more.

Regards,
The Autistic Self Advocacy Network and the APRAIS Coalition

Forbes on “Stars Vs. Science” once again the autism community looks bad

15 Jan

Forbes Magazine has an article, Stars Vs. Science, From Jenny McCarthy to Tom Cruise, some Hollywood hot shots are leading a war against modern science. The opening paragraph is pretty telling about the tone:

When the medical journal Pediatrics released a consensus report early this year concluding that autistic children do not benefit from special diets, ABC News’ Diane Sawyer knew just whom to call. Jenny McCarthy, former MTV game host, nude model and now mother of an autistic son Evan, enthusiastically denounced the study. “Until doctors start listening to our anecdotal evidence, which is it’s working, it’s going to take so many more years for these kids to get better,” she opined

Or, you can just take a look a the URL–science-jenny-mccarthy-business-healthcare-hollywood-autism.html

Once again, the Autism community takes it on the chin that our representative in the public eye is, well, in a league of her own when it comes to understanding science. Even though the story is about celebrities and science in general, autism plays a big part in the story as a whole. Take a look at the celebrities that were selected for the “slideshow”

Of course, there are Jenny McCarthy and Jim Carrey (click to enlarge and read the caption):

Ms. McCarthy and Mr. Carrey have been trying to shake loose the anti-vaccine image for a while. It doesn’t appear to be working. From the article:

But some of the best-known celebrities use their soap boxes to spread scientifically dubious–and potentially harmful–messages. Jenny McCarthy believes vaccines cause autism, despite numerous studies to the contrary. She campaigns against child vaccines that have been shown to save lives. In 2008, the Centers for Disease Control reported that measles outbreaks had spiked because more parents were deciding to leave their children unvaccinated, thanks to the burgeoning anti-vaccine movement.

Others who made the cut? Arriana Hufffington, of the Huffington Post, (again. click to enlarge):

It is worth reading the caption to that one. Dr. Rahul Parikh is quoted from his Salon.com piece, The Huffington Post is crazy about your health, Why bogus treatments and crackpot medical theories dominate “The Internet Newspaper”.

The quote:

But Huffington has distorted science and facts…fairness and accuracy in health and medicine take a back seat to sensationalism and self-promotion

In his piece, Dr. Parikh had noted the Huffington Post blogs by “David Kirby, Jenny McCarthy’s pediatrician Jay Gordon and detox advocate Dierdre Imus” and also spends a considerable amount of time discussing a piece by Jim Carrey.

The Forbes piece also discusses Oprah Winfrey (click to enlarge):

Once again, autism is prominent in the description given by Forbes.

I’m sure some readers will assume I’m putting this up to embarrass these celbrities. Yeah, like being in Forbes is so low profile that LBRB is going to be the embarrassment for Oprah and company. No, this is just another vent of anger. Anger that the autism community is once again seen by the public as the home to people who are “leading a war against modern science.” Tell me how that helps us advocate.

One notable entry outside of autism is Bill Maher. (click to enlarge)

I bring this up because Forbes notes that Bill Maher has been discussed by “quack busting doctor-blogger David Gorski”. That’s the same guy you can find on Science Based Medicine,

The article does seem to be following a recent trend: they aren’t looking for “balance” by quoting groups from the anti-science side. Instead, qutoes are had by:

William Schaffner, chair of preventive medicine at Vanderbilt School of Medicine:

“These are folks who really don’t have the best information, but because they are vocal and well organized their message has gotten out” [as a result] “around the country pediatricians and their staffs are having to spend more and more time persuading parents to have their kids vaccinated in a timely fashion. It is an enormous problem.”

Stephen Barrett of Quackwatch.org

“Talk shows don’ t pay any attention to whether the advice on their program will kill people. … Producers consider it entertainment,” he says, adding: “Never take health advice from a talk show.”

and

Dr. Paul Offit of the Children’s Hospital of Philadelphia:

Why do celebrities feel the need to spout off on medical or scientific matters? Because they’ve excelled in one field, stars “think they’re an expert in many things,” says the vaccine expert Offit. “That part doesn’t bother me. It’s the part that we listen that bothers me.”

I’m inclined to agree with Dr. Offit. It is the part that we listen to celebrities when they talk about things far outside their expertise that bothers me.

Response to Jake at Age of Autism

14 Jan

Jake Crosby has written a fairly humdrum piece about me which contains a few errors (as do some of the comments), most notably his claim that he’s tried to contact me. I’ve not recieved any contact from him at all either to my personal email nor via the Feedback widget. If Jake wants to contact me to discuss his piece I’m more than happy to do so – you can get me at kevleitchATgmailDOTcom.

The piece itself is a rehash of some of the early comment threads on here – I used to think vaccines caused my child’s autism, then I changed my mind. Jake speculates about why that might be without coming to any firm conclusion.

Act now: Autistic Child Charged with Felony

6 Jan

Below is an email I received from Meg Evans of the Autistic Self Advocacy Network on a situation involving a child who is being charged with Felony Assault for resisting restraints in his school. Worse yet is the possibility that the student could end up being sent to a mental hospital pending a competency hearing.

This is another ASAN Update for bloggers in the Autistic and disability rights communities. ASAN has created an Action Alert regarding the case of an 11-year old Autistic boy in Arkansas named Zakhqurey Price, who has been charged with felony assault after a school restraint incident. There were no serious injuries, and the incident occurred under circumstances where the use of restraint would not have been legal if recently introduced federal civil rights legislation to protect children in schools had been in effect. We are asking that you take action by contacting the school principal and superintendent to inform them of your concerns and by reposting the ASAN Action Alert set forth below.

As always, we encourage you to contact us with your comments, and please let us know if you would prefer to receive these announcements at a different address or to be removed from the list.

Best regards,

Meg Evans, Director of Community Liaison
Autistic Self Advocacy Network
mmevans@woh.rr.com

Below is the statement by Ari Ne’eman:

By Ari Ne’eman, ASAN President.

Hello,

In the past, we’ve written to you about advocacy issues relating to the rights of adults and youth on the autism spectrum. Our voices have made a difference on all manner of policy concerns and have sent a clear message that those who seek to deprive Autistic people of any age of their rights will have our community to answer to. Now we’d like to ask you to help us take action to help protect an 11-year old Autistic boy in Arkansas named Zakhqurey Price, currently being charged with felony assault after fighting back when two staff members restrained him in response to behavioral challenges. The school has ignored repeated efforts from Zakh’s grandmother over the course of the last five months to obtain needed IEP supports to improve his educational options and manage his behavioral difficulties.

According to the suspension notice, the restraint was in response to Zakh destroying school property – something beyond the scope of what would be allowed under recently introduced federal civil rights legislation around restraint and seclusion in schools. Disability advocates, including ASAN, are fighting to pass this crucial legislation that would broaden the protections available to students like Zakh as well as those with other disabilities and with no disability at all. We have asked for your help in passing this important legislation, and together we can succeed in bringing proposed civil rights protections into law – but not in time to help Zakh. That is why we need you to take action now. Find out how below:

School Principal:
Pam Siebenmorgan (One of the charging parties in Zakh’s felony hearing – polite but firm calls and e-mails encouraging her to drop the charges would be helpful)
Phone: 479-646-0834
E-mail: psiebenm@fortsmithschools.org

School Superintendent:
Dr. Benny Gooden (The Superintendent runs the entire school district – polite but firm calls and e-mails communicating how this situation is damaging Fort Smith Public Schools’ reputation would be helpful as well)
E-mail: bgooden@fortsmithschools.org
School Board Office: 1-479-785-2501 Ext. 1201

We recommend that you both e-mail and call if you can. If necessary, e-mail is the preferable option. If you would like your e-mails to be passed along to Zakh’s grandmother, please bcc: info@autisticadvocacy.org. Please stress the importance of Fort Smith Public Schools taking the following steps:

-Drop the charges against Zakhqurey Price

-Work with his grandmother to put in place an IEP that will fulfill Zakh’s right for a Free and Appropriate Public Education in the Least Restrictive Environment

-Improve training for school personnel to prevent future such incidents and to ensure that students on the autism spectrum as well as with other disabilities are included, supported and educated in Fort Smith Public Schools.

If Zakh is declared incompetent as part of the hearing scheduled for January 12th, state law requires that he be placed into a mental hospital for at least 30 days. His grandmother fears that, due to the negative repercussions of being taken out of the community and being forced into an institutional setting, Zakh may lose skills in such an environment and not be returned to her indefinitely. That is why we need you to act now. Please distribute and repost this action alert. Thank you for your time and your advocacy, and as always, Nothing About Us, Without Us!

I usually avoid posting names and phone numbers like this. All to often blogs post such information in an attempt to intimidate. Take to heart Mr. Ne’eman’s call to be polite but firm when you call.

How Anti-Vaccine ‘Science’ Holds Back Credible Research

4 Jan

An expert panel says there’s no rigorous evidence that digestive problems are more common in children with autism compared to other children, or that special diets work, contrary to claims by celebrities and vaccine naysayers.

This is a totally non contentious piece of work. The panel examined all _credible_ research into the subject and decided there simply wasn’t anything available to support the idea of a things such as autistic entercolitis – a faux syndrome pushed by the section of autism anti vaxxers who believe Andrew Wakefields fake science.

Take careful note though of what they are saying:

1) That there’s no credible evidence. Parental anecdote is not credible evidence.
2) Thats autistic children may well have gut issues and that if they do they should be treated medically.
3) That special diets show no eficacy in _treating autism_ .

The issue for me therefore is that when autistic kids have gut issues they need to be treated properly by medical staff. This means making appointments that allow for the special needs of autistic people (either first in the day or last in the day to avoid waits, quiet waiting rooms with appropriate distractions and most of all well trained staff who won’t say caustic things to parents).

A TACA representative is quoted as saying:

“I’m filled with hope after reading this report,” said Estepp of the support group Talk About Curing Autism. “I wish this report would have come out 10 years ago when my son was diagnosed.”

Ironically, TACA who support the work of Andrew Wakefield probably _could_ have had a report like this ten years ago if the work of Andrew Wakeild hadn’t been so heavily promoted by groups like TACA.

The new report says the existence of autistic enterocolitis “has not been established.” Buie said researchers and doctors have avoided digestive issues in autism because of their connection with Wakefield’s disputed research, which set off a backlash against vaccines that continues to this day.

Quite understandably, researchers didn’t want to get involved in a field tainted by a person like Wakefield and his demonstrably false and disproven idea that MMR causes or contributes to autism. If they did, when they came out with science that contradicted Wakefield they would be subject to the same sort of hate crimes currently perpetrated against numerous other scientists such as Paul Offit who has recieved death threats. Who would want that?

Quite simply – if people like Wakefield admit their error and then shut up, more science will be done that will reveal more results groups like TACA may well support.

Autism Clusters Found: areas with high incidence of autistic children

1 Jan

Researchers at the U.C. Davis MIND Institute has discovered regions in the state of California that have notably higher autism incidence. But the story is more complicated, and more sad, than one might think at first. Instead of indications of an “autism epidemic”, these clusters point to the fact that minority and poor children are much less likely to receive autism diagnoses.

I don’t have the paper yet (I’m still trying to find the abstract), but articles in the Woodland Daily Democrat and the San Diego Union-Tribune are reporting the story.

The clusters do not appear to point to environmental causes. Instead…well, read for yourself:

Researchers said that in this investigation the clusters probably are not correlated with specific environmental pollutants or other “exposures.” Rather, they correlate to areas where residents are more educated.

Children with autism diagnoses in these clusters are more likely to be White and have parents with high education levels. Again, a quote:

“In the U.S., the children of older, white and highly educated parents are more likely to receive a diagnosis of autism or autism spectrum disorder. For this reason, the clusters we found are probably not a result of a common environmental exposure. Instead, the differences in education, age and ethnicity of parents comparing births in the cluster versus those outside the cluster were striking enough to explain the clusters of autism cases,” said senior author Irva Hertz-Picciotto.

Kids in the “clusters” are about twice a likely to be diagnosed autistic and kids in nearby areas.

Twice as high.

To the many of us armchair epidemiologists who who have looked closely at the California Department of Developmental Services (CDDS) data, this comes as no surprise.

For me, the most memorable discussion of the autism clusters came from Autism Diva, in her post from July 1997, Malibu and Compton: Compare and Contrast.

Here is a graph from that post:

The South Central Regional Center, in a predominantly non-White, poor area of the Los Angeles basin, had an administrative prevalence of 33 per 10,000. Compare that to Westside Regional Center with a prevelance of 84. Westside is a much more affluent are with a higher proportion of White families.

From the San Diego Union-Tribune:

“There is mounting evidence that at least some of this clustering results from the greater access and utilization of services by those with more years of schooling,” the UC Davis researchers wrote.

Yes, there is a certain “I told you so” moment here. This blog, Autism Diva, Autism Natural Variation, Autism Street and others have been pointing out the apparent autism clusters in the raw CDDS data for years. Long before I started blogging. But the real story isn’t the effect such clusters have on the idea of the “autism epidemic”. Rather, this is a clear indication that we are underserving the disabled in our minority and poor communities. This is just plain wrong.

It is long past time for real autism advocacy organizations to work on increasing awareness and access to services in underserved areas. The autism “clusters” are probably not real. From where I sit, what is real are the “anti–clusters” of undiagnosed autistics, minorities, the poor, and, yes, adults.

Special fevers, mitochondria and autism

30 Dec

Thats right, its back.

Ginny Hughes, writing for the Simons Foundation writes about new methods of detecting mitochondrial damages that may lead to autism. Of course, since last year that inextricably calls to mind Hannah Poling.

Just as a quick refresh, Hannah’s case was compensated by US Gvmt who accepted that vaccines caused a fever which triggered an underlying mitochondrial dysfunction which in turn led to ‘autism like symptoms’. This is oppose to ‘vaccines caused her autism’ which you’ll find a lot of people claiming.

The crux of the matter is fever. Mitochodrial dysfunction appears to be largely triggered by fever. Without the fever there’s no dysfunction. Without the dysfunction theres no autism.

Jay Gargus, professor of physiology and biophysics at the University of California, Irvine who’s studied mitochodria for 20 years makes a very telling point in this piece:

“It terrifies me that people will be making arguments [from this work] that further enhance the panic about vaccines,” Gargus adds. “Obviously, getting a vaccination will sometimes give you a fever, but the kid’s going to get a fever sooner or later anyway. It’s not like it’s a special fever.”

All kids get ill. They’re going to get fevers. In fact a lot of the things that vaccines try and prevent cause fevers. Flu for example. What vaccines don’t do is give a child a ‘special’ autism causing fever. Thats because there _is_ no special autism causing fever and no special autism causing vaccines either.

Five-percent of nothing

25 Dec

To paraphrase Mark Twain, a phony statistic will travel half way around the world before the truth can get its boots on – and even further when the phony statistic is hitched to the wagon of vaccine denialism.

A case in point: last June, blogger Amy Lutz  launched a broadside against neurodiversity with the following alleged quote:

Dr. (Lee) Wachtel estimates that “less than five percent” of diagnosed autistics have the linguistic and cognitive skills to participate in this movement. “Most are not going to grow up to be Temple Grandin,” she adds, referring to the famous autistic author and doctorate in animal science. On the contrary, Dr. Wachtel believes the average autistic will never go to college or live independently, and instead will struggle his entire life with the communication and social deficits that define the disorder…

Wachtel is a child and adolescent psychiatrist at Baltimore’s Kennedy Krieger Center. Lutz didn’t explain what it means to “participate” in neurodiversity, nor did she reflect on the fact that most kids don’t grow up to be Temple Grandin anyway. “This article by Lutz … has the appearance of journalism, and quotes a doctor in support of Lutz’s contention that neurodiversity is a bad thing, overall,” notes autism blogger Kim at CounteringAgeOfAutism, who tracked down the source of Wachtel’s alleged quote. “It doesn’t help that Lutz doesn’t seems to understand what neurodiversity is.”

Lutz’s post raised a few eyebrows. Commenter Jen Niebler wrote ND is not about “marginalizing the ‘real autistics’ – it’s about listening to all autistics and how they wish to be treated.” LBRB founder Kevin Leitch commented “A total misrepresentation of the ND viewpoint who (as I am one, and parent to a severely autistic child I am very aware of this) consider autism a disability AND a difference. Did the author talk to anyone from the ND community before writing this?”

Eventually Wachtel’s quote faded into the ether, only to be resurrected six months later in a comment at about.com, where blogger Lisa Jo Rudy worried that Ari Ne’eman’s recent nomination to the Council on Disability might not sit well with the anti-vaccine crowd. Commenter LoopyLoo wrote:

I’m frustrated and worried. High-functioning, highly verbal people with autism have just about zero in common with my severely impaired, non-verbal child. I’m glad that things have worked out so well for him, but in the general population of people with autism only about five percent will ever be able to participate in a movement like neuro-diversity. Acceptance of/for people who aren’t NT is a fine and lovely goal, but I’d rather have a cure.

When asked to source the “five percent” figure, LoopyLoo pointed to Wachtel. But a query to KK’s media relations office tells the rest of the story:

Regarding Dr. Wachtel’s quote, her comments were pulled from a conversation that she had with a parent. She wasn’t aware that they would appear on a large web site as was the result. Her comments were also made relative to the severely impaired patient population that she sees. The majority of these patients can be described as she did in her comments, but the full context of the discussion would include mention of the fact that advances are happening in the field of early intervention which may change outcomes for toddlers who are being newly diagnosed today at age two or earlier. Also – she does not have a citation or reference for the “less than 5 percent” reference. Again – it was a casual comment made to a parent, and within the context of her patient population.

In a follow up email, KK characterized Wachtel’s words as “casual comments made relative to Dr. Wachtel’s daily frame of reference – her severely affected patient population.” In other words, the five percent figure does not refer to all autism spectrum disorders.

The blogger, Amy Lutz, confirms the quote came from her private conversation with Wachtel, and she stands by it. “I asked Dr. Wachtel to approximate, based on her seven years of work in autism treatment and research, the percentage of diagnosed autistics who could actively participate in a political movement – because, as we all agree, there is (sic) no data in the scientific literature to answer this question,” said Lutz in an email. “Her answer, five percent, is, as I explicitly stated in my essay, an ‘estimate.'”

In a perfect world, a throwaway quote by a careless writer wouldn’t matter. But in our wired, interconnected world, poorly sourced quotes are sustenance for ideologues.

The premise here – that only the highest functioning autistics can “participate” in neurodiveristy –   would be news to many of the pro-ND bloggers who are significantly disabled, notes autism blogger Sullivan. “The fact of the matter is that everyone (autistic/non-autistic, all levels of disability) benefit from neurodiversity.”

As anti-vaccine activists and other line up to oppose Ari Ne’eman’s nomination, we are sure to see more inaccurate and self-serving definitions of neurodiveristy. And it’s a safe bet that the “five-percent” quote will surface yet again.

My “hostile” or “threatening” messages to the Age of Autism editors

23 Dec

I’m critical of the Age of Autism blog and their so called “editors”. That comes as no news to anyone who has read this blog, I’m sure. But I found an odd bit in David N. Brown’s recent piece, Paul Offit’s Mythical Millions (v. 2), when he noted that Mr. Mark Blaxill and Mr. Dan Olmsted wrote in a recent Age of Autism piece:

Most notably, we have received hostile (and in one case threatening) messages from readers who take issue with our estimates

I sent email messages to Mr. Blaxill and Mr. Olmsted, pointing out their mistakes. Hostile and threatening were not the way I would characterize the emails, so I emailed Mr. Blaxill and Mr. Olmsted with my request for clarification of their comments. They have not responded, which I am taking as confirmation that they considered my communications “hostile” and/or “threatening”. I thought I would let the readers decide whether based on the actual messages below.

As a bit of a backstory, Mr. Olmsted and Mr. Blaxill wrote a piece where they estimated the amount of money Dr. Paul Offit earned from his share of his vaccine patents. In this piece, they made a number of errors. I pointed out some of the errors, errors that were easily confirmed with publicly available information, via email.

I thought I had phrased this in a non “threatening” and non “hostile” manner. Again, I leave it to you, the reader, to decide.

Here is my initial letter to Mark Blaxill and Dan Olmsted, editors at the Age of Autism blog.

Mr. Olmsted, Mr. Blaxill,

I am sure you are interested in accuracy whenever possible in your blog posts. I assume you want to know and want to correct errors.

In a recent post of yours, you estimated the royalty payment for Dr. Paul Offit from CHOP’s sale of it’s rights to the rotavirus vaccine Dr. Offit, Dr. Plotkin and Dr. Clark invented.

Your post makes an estimate that is markedly higher than the real number. This is in large part to two errors you made.

First, the Patent and Intellectual Property Policy you used is incorrect. You rightly note that this is a new policy and that the rotavirus patent was likely covered by a previous policy.

The details of the previous policy are included in this document (http://stokes.chop.edu/forms/btob/Jan07BtoB.pdf) , which can be easily found with the following google search:

Patent and Intellectual Property Policy site:chop.edu

Using the older policy and the $182M reported as the payment CHOP received for their patent, you can calculate an inventors share of $18,550,000.

The second mistake in your estimation is in assuming that Dr. Plotkin and Dr. Clark. did not share in the CHOP inventor share. This is incorrect. Again, a quick google search will demonstrate that Dr. Plotkin and Dr. Clark were, indeed, CHOP faculty. Therefore, the $18,550,000 is divided by 3, resulting in an inventor share of $6,183,333.

The CHOP 2006 annual report (http://stokes.chop.edu/publications/annual_report/pdf/annual_report_2006.pdf page 42) clearly states that Dr. Plotkin and Dr. Plotkin were part of the CHOP team that invented the vaccine. Other pages on the CHOP site note that Doctors Plotkin and Clark were, indeed, faculty there.

I have already emailed Dr. Offit to check that this is an accurate representation of the facts, and he confirmed this.

I look forward to seeing how you make use of these corrections.

Mr. Blaxill reponds:

Dear Sullivan,

Please identify yourself. I do not respond to unsigned communications.

Sincerely,

Mark Blaxill

Sullivan:

Mr. Blaxill,

I realize that this is your policy and I respect that. I apologize for contacting you like this, but I felt it important that you have accurate information in this case. The links I supplied confirm this. That information is independent of whether I sign or do not sign my email.

I believe your mistake to be an honest one. At the same time I believe it was easily avoided as accurate information is readily and publicly available. Note that I made a conservative estimate, using the full $182M of the Royalty Pharma payment, not the $153M you report as net income from CHOP’s sale.

I respect your policy and I was not and am not looking for a response. I do hope that you will act on the information provided.

Mr. Blaxill:

Dear “Sullivan”,

Your information is interesting but equivocal. I have information that goes in the other direction. More to the point, we asked both Offit and CHOP to comment on the story before publication and they declined. The only definitive way to resolve the ambiguity is full disclosure of the amounts Offit received from all sources and he has declined to do so. So we have no plans at the moment to act on this or any other new information, which at the most amounts to a distinction without a difference. The conclusion stands: Rotateq made Offit a millionaire.

In the meantime, you continue to hide behind an anonymous email address. You must understand that discredits you as a source.

Sincerely,

Mark Blaxill

Sullivan

Dr. Offit has publicly stated how much he was paid by CHOP.

http://counteringageofautism.blogspot.com/2009/09/paul-offit-explains-money-side-of.html

A blogger contacted Dr. Offit and Dr. Offit responded. The blogger (David N. Brown) used his real name in reporting the information. No different than had he responded to you and you had included that information in your blog under your name.

Were you both unaware of that blog and that post?

Will you make the correction now?

Mr. Olmsted and Mr. Blaxill did not make the correction. The recently admitted their mistakes, but have yet to make the correction.

Upon reading the comment that they had received “hostile” and “threatening” responses, I decided to inquire as to whether they were referring to the exchange above. Below is my final email in this exchange.

Mr. Olmsted, Mr. Blaxill:

In reading David Brown’s discussion of your recent blog post on Dr Offit, I found this comment: ” Most notably, we have received hostile (and in one case threatening) messages from readers who take issue with our estimates. ”

I would like to know if you include this exchange as either hostile or threatening.

I thank you for your time.

This has remained unanswered. I take this as a strong indication that, yes, they considered my discussion “hostile” or “threatening”.

Frankly, I believe either clarification or an apology are in order from Mr. Blaxill and Mr. Olmsted as the above discussion was quite respectful. Do I expect that? No. I don’t expect such behavior from people who would write the passage below:

“The only definitive way to resolve the ambiguity is full disclosure of the amounts Offit received from all sources and he has declined to do so. So we have no plans at the moment to act on this or any other new information, which at the most amounts to a distinction without a difference. “

The message was clear to me: the blog post would remain uncorrected unless Dr. Offit met their demands. The fact that Mr. Olmsted and Mr. Blaxill were clearly mistaken had no bearing on whether the piece would remain. Note that even though they have admitted their mistake, no mention is made in their original post to this day.

I started the above communication with the assumption that Mr. Blaxill and Mr. Olmsted were honorable people who, while we disagree, would put accuracy above smear.

I am willing to admit my mistake.

Ari Ne’eman on disability

23 Dec

There is a myth that is spreading around the internet. The myth that neurodiversity means denying that autism is a disability. I see this over and over on this blog in the comments. I see it elsewhere in blogs that put truth second to promoting their messages. I have assumed that most people see the myth for what it is and disregard the comments of the uninformed or the misinformationists.

So you can imagine that was quite dismayed to see the myth be repeated by Lisa Jo Rudy on the autism.about.com blog.

Ari Ne’eman is the founder of the Autism Self-Advocacy Network (ASAN) and a well-known activist on behalf of the rights of individuals on the autism spectrum. He’s also a controversial figure because of his views on “neurodiversity” – the perspective that autism is just one of many different ways of thinking, rather than a disability or disease to be cured.

I don’t think she was trying to discredit Mr. Ne’eman, she was just passing along what she had read. Ms. Rudy was kind enough to post a message that Mr. Ne’eman sent, correcting the misconception:

Correction: Ari Ne’eman writes to say: I have never claimed autism is not a disability – in fact, I worked to pass the ADA Amendments Act, to ensure that it would be considered as such under the ADA. The claim that I or ASAN’s advocates don’t consider autism a disability is an unfortunate myth, which I’d appreciate if you could correct

I think a few more comments by Mr. Ne’eman are worth noting. This one from the Cat in a Dog’s World blog.

“As for the comment made about my Jewish Week article, I don’t recall saying at any point there that autism wasn’t a disability – only that it was not a disease, something I think exemplifies the neurodiversity position much better. I did seem to imply it though with the phrase “difference is not disability”. Though the phrase is technically true, I shouldn’t have phrased it that way. I was wrong to do so – and if that is the worst mistake I’ve made or ever will make in print, I’ll count myself lucky. Fortunately, I have years of advocacy work and public statements that show my work in the Disability Rights movement as a person with a disability.

So let me be clear now – Asperger’s and the broader autism spectrum are disabilities. I know this not just from personal experience but because I helped pass the law that reinforced this as the case – the ADA Amendments Act, which re-established a broad definition of disability under the ADA after a decade of judicial narrowing that drove even significant intellectual disability out of the law’s coverage, much more so the vast majority of the autism spectrum.

It was one of the first things I had the pleasure of doing when I got involved in Washington. Here’s the press release from when we announced the compromise brokered with the business community:http://www.civilrights.org/press/2008/employers-and-disability.html It comes from the Leadership Conference on Civil Rights, a group that I consider it an honor to have had the opportunity to work with both during the ADA Amendments effort and the more recent advocacy push around health care reform. We have a long way to go in building our community, but I’m really heartened that we’re being welcomed by the cross-disability and civil rights communities. It’s a good sign about our movement’s future.”

Many people spreading this myth rely on a comment Mr. Ne’eman made when he was seventeen years old.

We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not, in itself, disability; it becomes disability when it is not properly understood and accommodated. Someday, I hope the world will recognize that those who think in different ways should be welcomed.

Difference is not, in itself, disability….

That is not the same thing as saying that autism is not a disability, not at all.

The odd thing, when people quote that paragraph, they tend to leave the final line off: “Someday, I hope the world will recognize that those who think in different ways should be welcomed.”

Mr. Ne’eman contributed testimony in support of the ADA (Americans with Disabilities Act) Amendments Act, or ADAAA, being one of many thanked in the Congressional Record:

“Finally, at the risk of leaving out some individuals, we want to recognize some of the additional countless individuals who helped with educating Members of Congress, doing important coalition and media work, and providing legal input on the bill as it progressed through Congress, from its first stages through the final vote today

One need only spend a short time on the Autistic Self Advocacy Network’s website to find many statements by Mr. Ne’eman and others clearly showing that ASAN members recognize autism–as in all the autism spectrum disorders–as a disability.

Mr. Ne’eman and ASAN also worked on recent legislation to limit seclusions and restraints in schools.

I am curious as to how people reconcile the myth that Mr. Ne’eman doesn’t consider autism as a disability with his efforts in the disability community?

From what I am reading on the net lately, people are now considering the recognition of autism as a disability as something new for Mr. Ne’eman. The Congressional Record I cited above is from 2008. Of course, one could notice that in his 2006 [correction note, I mistakenly put 1996 here originally] essay, the same one that is used to paint him as denying the disability inherent in autism, Mr. Ne’eman refers to his own experiences within special education.

Unfortunately I don’t think things will change much for Mr. Ne’eman. His detractors are not prone to admitting mistakes. I don’t expect them to make much inroads in derailing Mr. Ne’eman’s nomination to the National Council on Disabilities, either. It is one thing to spread misinformation on the internet. It is another thing entirely to convince people who have seen Mr. Ne’eman working within the disability advocacy community.

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