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Underimmunization in Ohio’s Amish: Parental Fears Are a Greater Obstacle Than Access to Care

29 Jun

With apologies for opening the subject of the Amish and autism once again, a recent paper in the journal Pediatrics explores vaccination and the Amish: Underimmunization in Ohio’s Amish: Parental Fears Are a Greater Obstacle Than Access to Care. Seth Mnookin has already discussed this at The Panic Virus at PLoS blogs in Anecdotal Amish-don’t-vaccinate claims disproved by fact-based study.

What is worrisome here is the fact that the nderimmunization amongst the Amish is resulting from parental fears. In a very different study from 2001, Haemophilus influenzae Type b Disease Among Amish Children in Pennsylvania: Reasons for Persistent Disease, most Amish parents who chose to not vaccinate were citing availability and convenience rather than fear as the reason.

To repeat–in 10 years the reasons for non-vaccinating amongst the Amish have changed from convenience to fear. We can’t say exactly why, but it seems quite plausible that the focus on autism, vaccines and the Amish could have played a role.

Given that the “Amish Anomaly” notion seems destined to linger on, I have written up another summary of the history and the facts of the story.

Dan Olmsted, now the owner of the Age of Autism, was once an editor for UPI. It was during his UPI time that he took on the autism/vaccine question that has since dominated his professional life. Back in 2005 he ran a series of stories which investigated the proposed link between autism and vaccines and, in specific, mercury. It was right around the time that the David Kirby/Lyn Redwood book “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical Controversy.” was published. This was likely the high water mark for the public’s acceptance of the vaccines-causation idea.

One of the ideas that Mr. Olmsted explored was that of the Amish. He started with the belief that they don’t vaccinate and set out to investigate whether this correlated with a lower autism prevalence. The idea of the Amish being a largely unvaccinated population was set out years earlier. David Kirby describes in Evidence of Harm how Lyn Redwood of SafeMinds discussed this in a presentation she made to congress in the year 2000.

Mr. Olmsted described his investigation starting in a piece, The Age of Autism: Mercury and the Amish . There was plenty of data even then which Mr. Olmsted could have considered which went against his hypothesis. Since then even more data has mounted against the idea.

And, yet, it persists. Often the “Amish don’t vaccinate and they don’t have autism” story pops up in internet discussions following news stories. Books have incorporated the idea. Of course it ends up in alternative medicine books on autism such as Kenneth Bock’s “Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies”. The idea can be found in other boos as well, including “Timeless Secrets of Health and Rejuvenation” (2007) and “Cry for Health: Health: the Casualty of Modern Times” (2010). Again, this is a reason to revisit the debunking of this myth. The myth lives on, even in the face of facts.

In his 2005 UPI article, Mr. Olmsted started out with the assumption that the Amish don’t vaccinate. He set out to see if he could find autistics amongst the Amish, but didn’t look into the vaccination question with any depth:

So I turned to the 22,000 Amish in Lancaster County, Pa. I didn’t expect to find many, if any, vaccinated Amish: they have a religious exemption from the otherwise mandatory U.S. vaccination schedule.

As is well known now, the Amish do not have a religious exemption from the vaccine schedule. They do not have a religious prohibition against vaccination.

This was something Mr. Olmsted could easily have confirmed at the time. He might have checked the 1993 book Amish Society by John Andrew Hostetler (1993), in which he would have found the following statements about medicine:

“Some are more reluctant than others to accept immunization, but it is rare that an Amish person will cite a biblical text to object to a demonstrated medical need…” ….””If the Amish are slow to accept preventive measures, it doesn’t mean they religiously opposed to them…”

He might have made more than a cursory effort to contact people at the Clinic for Special Children in Strasburg, Pennsylvania. The Clinic, aside from serving special needs children (including autistics) runs vaccine clinics and has for some many years. In a piece explaining Mr. Olmsted’s failures, Mark Blaxill (also of the Age of Autism) explained that the Clinic did not return Mr. Olmsted’s phone call. No mention is given why Mr. Olmsted didn’t go to the clinic in his visits to Lancaster County

Had Mr. Olmsted done so, he would have known that this statement, again from his 2005 piece, was incorrect when he relied on a source who claimed a very low immunization rate:

That mother said a minority of younger Amish have begun getting their children vaccinated, though a local doctor who has treated thousands of Amish said the rate is still less than 1 percent.

He also made a misleading statement:

When German measles broke out among Amish in Pennsylvania in 1991, the CDC reported that just one of 51 pregnant women they studied had ever been vaccinated against it.

What is left vague in this statement was the fact that the 51 pregnant women were those who contracted German measles. Not surprising that those infected were largely unvaccinated. This doesn’t tell us what fraction of the whole population were vaccinated though, and is quite misleading.

One might wonder why Mr. Olmsted was not aware that the Amish participated in the eradication of Polio. Conversely, he might have questioned how polio was eradicated if the Amish did not vaccinate. Here is a March of Dimes photo from a 1959 vaccine clinic:


(from March of Dimes By David W. Rose, 2003)

An article available to Mr. Olmsted at the time of his 2005 article, Haemophilus influenzae Type b Disease Among Amish Children in Pennsylvania: Reasons for Persistent Disease, discussed the reasons why Amish parents did not vaccinate their children. While some did cite “religious or philosophical objections”, the majority said they would vaccinate if “vaccination were offered locally”:

Among Amish parents who did not vaccinate their children, only 25% (13 of 51) identified either religious or philosophical objections as a factor; 51% (26 of 51) reported that vaccinating was not a priority compared with other activities of daily life. Seventy-three percent (36 of 49) would vaccinate their children if vaccination were offered locally.

Since Mr. Olmsted’s original series, more data has come in refuting the “Amish Anomaly”. In 2006, a paper was published: Vaccination usage among an old-order Amish community in Illinois. Here is the abstract:

The Old-Order Amish have low rates of vaccination and are at increased risk for vaccine-preventable diseases. A written survey was mailed to all Amish households in the largest Amish community in Illinois inquiring about their vaccination status and that of their children. In this survey, the Amish do not universally reject vaccines, adequate vaccination coverage in Amish communities can be achieved, and Amish objections to vaccines might not be for religious reasons.

It is clear that the Amish do vaccinate and that it would have been simple for Mr. Olmsted to find accurate information about this at the time. It was certainly more difficult for Mr. Olmsted to ascertain what the prevalence of autism might be amongst the Amish. He made the assertion: ““there are only a few of them [autistic Amish] in the United States”.

Of the “few” Amish autistics Mr. Olmsted could find, six were being treated by Lawrence Leichtman. The children were unvaccinated but the doctor who reported them to Mr. Olmsted attributed their autism to high mercury levels. This is not surprising as Dr. Leichtman was one of the early alt-med practitioners working in autism, being part of the secretin fad of the 1990’s. One wonders if the “elevated mercury” levels in these children would stand up to tests performed by qualified medical toxicologists.

Another six autistic Amish, nearly under Mr. Olmsted’s nose at the time of his article, were being treated by the Clinic for Special Children in Lancaster, PA. Six children who had PDD or Autism were at that time being treated and written up for a study in the New England Journal of Medicine. They were missed by Mr. Olmsted. He has since argued that these children are syndromic and, thus, somehow not as relevant to his story. Those arguments aside, this was a clear miss for Mr. Olmsted.

In 2010, a study was presented at IMFAR: Prevalence Rates of Autism Spectrum Disorders Among the Old Order Amish

Preliminary data have identified the presence of ASD in the Amish community at a rate of approximately 1 in 271 children using standard ASD screening and diagnostic tools although some modifications may be in order. Further studies are underway to address the cultural norms and customs that may be playing a role in the reporting style of caregivers, as observed by the ADI. Accurate determination of the ASD phenotype in the Amish is a first step in the design of genetic studies of ASD in this population.

A preliminary number of 1 in 271 is a far cry from “little” or no autism amongst the Amish. Given the limitations of working within a community like the Amish, it is surprisingly close to the 1 in 100 often cited as the autism prevalence estimate for the general U.S. population. The study was being prepared for submission when I checked with the lead author last fall. It will be interesting to see what the final number is obtained for the prevalence.

The IMFAR abstract was available, I believe, before Dan Olmsted’s book, The Age of Autism, went to press. Instead of including this information, he chose to paint autism as rare amongst the Amish using quotes he obtained in 2005 and unsupported statements like, “the most aggressive possible count of autistic Amish comes to fewer than 20 cases, which would give us a rate of no more than 1 in 10,000.” It seems unlikely, given the low sales figures, that The Age of Autism will be reprinted. If that should happen, I wonder if Mr. Olmsted will correct this misinformation. The facts are clearly against him. Certainly, his review of internet sources and cursory tour of Lancaster County hardly counts as “aggressive”.

The “Amish don’t vaccinate and don’t have autism” idea was never very well supported. Now, with more data in, it is just plain wrong. It would be a good and honorable thing for Mr. Olmsted himself to make this clear. Good. Honorable. And not going to happen.

You can make a big difference with money placed in the right scientific hands

23 Jun

The Autsim Science Foundation (ASF) is featured on Philanthroper.com. Every day, Philanthroper focuses on a different charity and today it ASF.

I just donated. It’s just a dollar, and it only takes a minute. Yes, a dollar. It’s about group giving. When I just checked, they were up to $260.

Take a minute. Take a dollar. Contribute to autism research.

Autism Science Foundation interview: Christie Buchovecky

18 Jun

Christie Buchovecky is a pre-doctoral research at Baylor College of Medicine. Her research project, Identifying Genetic Modifiers of Rett Syndrome in the Mouse, is supported by the Autism Science Foundation. Here is a video interview of Ms. Buchovecky from IMFAR 2011. It is very interesting to hear about Rett syndrome and the learning that has happened into the genetic link and the potential for treatment.

One thing I like about the ASF is their focus on funding new researchers, pre-doctoral and post-doctoral. It strikes me as highly important to pull new people into the field.

ACTION ALERT: What Does Community Mean To You? Let Medicaid Know!

11 Jun

Here is an action alert from the Autistic Self Advocacy Network (ASAN)

What does community mean to you? For some people, this question doesn’t mean much but for the hundreds of thousands of Americans receiving Medicaid Home and Community Based Services (HCBS), the meaning of community has huge implications. Last year, the State of Missouri attempted to use Medicaid dollars allocated to serving individuals with disabilities in the community for the construction of group homes on the grounds of an institution. The Center for Medicare and Medicaid Services (CMS) quite rightly refused to allow Missouri to use Medicaid HCBS funding for this plan, as the purpose of the HCBS program is to help people avoid institutionalization, not to support settings that further segregate people from their communities.

Now our friends at CMS are trying to put in place strong minimum standards for HCBS settings, to prevent what almost happened in Missouri from occurring in the future. CMS has proposed regulations which would prevent HCBS dollars going to institutional facilities, settings which are on the grounds of an institution, settings which are segregated on the basis of disability and settings which have the characteristics of an institution, such as lack of privacy or rules about when people can eat and sleep. This is an unprecedented opportunity for the disability community to support a real minimum standard for community living.

We need your help to make these standards a reality. CMS’ proposed rulemaking (available here) is only open for comments for four more days (it closes this Tuesday, June 14th at 5 PM) and we know that the usual suspects in the institution and nursing home industry have already written in opposing any standards for how HCBS dollars are used. We need people to write in to tell CMS that community living does not occur on the grounds of an institution and doesn’t include arbitrary restrictions on the rights of people with disabilities.

Here’s what you can do:

1. Write in to CMS and tell them that you SUPPORT the proposed rulemaking by going to: http://www.regulations.gov/#!submitComment;D=CMS-2009-0071-0302

2. Don’t hesitate to add in your thoughts about what Community should mean and make suggestions about things that CMS could add to their proposed rulemaking. If you’re looking for ideas, don’t hesitate to use ASAN’s comments as an example. You can feel free to use our language if it makes it easier. Our comments are available here: http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=153

3. Send a copy of this advocacy alert to your friends and colleagues encouraging them to write in too – the more people who write in – be they people with disabilities, parents, professionals or just supportive allies – the stronger our position will be. Help us get the word out!

Remember to write in by THIS TUESDAY June 14th at 5 PM. This is a critical opportunity to have our voices heard and we shouldn’t let it pass us by. Remember, Nothing About Us, Without Us!

Regards,
The Autistic Self Advocacy Network

Why are some autism groups silent on the Combating Autism Reauthorization Act?

29 May

Last week, the Combating Autism Reathorization Act was introduced into the U.S. legislature last week. Many organizations were ready with quick responses: the Autism Science Foundation, ASAN, and Autism Speaks to name a few.

How about the organizations which promote the idea that autism is a vaccine injury? Organizations like Generation Rescue, the National Autism Association and SafeMinds, and Talk About Curing Autism?

A quick survey of their websites shows nothing. Nothing on the front pages that I can see. Nothing on their news pages. If I’ve missed it, let me know.

Sure, you can find great information on their sites. Like “Vaccine Injury/Autism Study, A Federal Cover-Up?” or how to buy compounded drugs or sunglasses. Or “Jenny McCarthy” in big letters. But on a key piece of legislation comes through and there’s essentially silence.

Just an observation.

ASAN: Tell Congress “No” to Three More Years of the Same On Autism Policy

29 May

The Combating Autism Re-authorization Act (CARA) has been started in the U.S. legislature. The Autistic Self-Advocacy Network (ASAN) has issued a position statement on the bill:

Today, Senators Menendez and Enzi will be introducing legislation extending the Combating Autism Act for three more years. The Combating Autism Act was passed in 2005 without the involvement or consultation of a single Autistic person, let alone the broader self-advocate community. Without legislative action by Congress, the Act would expire on September 30th of this year. While we respect the Senators’ good intentions, the Menendez-Enzi legislation would freeze in place the current flawed CAA programs, which fail to make any provision for services, do not incorporate anything about adults on the autism spectrum and exclude self-advocates. As a result, ASAN opposes any long term re-authorization of CAA without badly needed investments in services and vital program reforms to ensure self-advocates are involved at every level. We’re urging you to call your Senators and tell them to OPPOSE the Menendez-Enzi re-authorization legislation as too long an extension without any of the needed reforms. You can reach them through the Capital Switchboard at (202) 224-3121 by giving your state and asking to be put through to your Senator. Making the call and urging their opposition is important even if you don’t feel comfortable having a longer conversation, but if you want to provide additional reasons to oppose this extension we have provided several below:

A three year extension of the existing Combating Autism Act means a three year delay before Congress takes any meaningful action on services for Autistic people across the lifespan. It means three years before any new supports for adults on the autism spectrum are introduced and three years before any of the problems with the status quo are fixed. We can’t afford to wait that long.

CAA’s existing programs enable a severe bias in the autism research agenda against services and adult issues. According to the recently released IACC Research Portfolio, less than one percent of autism research dollars spent in 2009 went to research relating to adults while only three percent went to research about improving services, supports and education! This inequity calls out for change.

CAA’s existing structure excludes the very people who should be at the center of the autism conversation: Autistic people ourselves. By locking in place for another three years a bill that was passed without the involvement of self-advocates, Congress would be sending a message that the needs and perspectives of Autistic adults don’t matter.

Any long term extension of CAA must involve additional investments in services, greater inclusion of self-advocates in every program and more respectful language shifting from “combating autism” to supporting Autistic people. Call Congress today at (202) 224-3121! Remember to call twice in order to reach both of your Senators. If for accessibility reasons, you need to e-mail your Senators instead you can find their e-mails on the Senate website at this link.

We need your help to remind Congress they can’t ignore the voices of the Autistic community. As always, Nothing About Us, Without Us!

Regards,

The Autistic Self Advocacy Network

PaulOffit.com, a tempest in a teapot

28 May

A month or so back, I stepped forward to state that I, Matt Carey, have been posting as Sullivan here on Left Brain/Right Brain. Mr. J.B. Handley of the Age of Autism blog and Generation Rescue had made a commitment to transfer the domain pauloffit.com and to stop commenting on Dr. Offit should it be demonstrated that Sullivan was not Bonnie Offit, wife of Paul Offit.

The domain was not transferred until yesterday. In the time that has transpired, tempers have raised. The last comment in the string below should be taken as a sign of the frustration level and not as an opening for critique, in my opinion. I considered leaving it out for that reason.

I generally do not like to post emails. However, as Mr. Handley has already posted some of these exchanges, I feel that it is appropriate to post the full exchange at this time. Here are the emails which I have found in my inbox. If any are missing, I feel sure that will be brought to my attention and I will add them. I do not have access to the emails or other communications between Mr. Handley or his agent and the domain registration company register.com. I can’t tell if the request to email Dr. Offit was made or not. I can’t tell if register.com bungled the communication. I just don’t have that data.

At one place on the web (at least) I commented that Mr. Handley emailed me first. That he did not do. He made the offer to complete the deal on his blog.

April 29:

Matt:I’ll take care of it early next week, thanks for the guidance.

On a separate note, I wanted to ask you to submit to an interview via email for publication at AoA. I will generate the questions, you answer them, and I publish them in totality without editorializing. The topics will exclusively cover the science of autism, known and unknown, and include prevalence, vaccines, and medical issues.

My reason for asking is that you are really the first well-educated parent (although Harvey Mudd is no Stanford 🙂 I have encountered on the other side of this topic who doesn’t seem to be a nut job (Kevin Leitch, Autism Diva, etc.).

I honestly do not understand how you have looked at the same published research I have looked at and concluded that vaccines have been exonerated from causing a majority of today’s autism. I really, truly do believe that the large-scale epidemiological studies that are constantly cited as “proof” are garbage, have yet to ask the right questions, and are typically managed to produce a previously determined outcome. I believe Allison ISnger and Paul Offit consistently and knowingly misrepresent what has been studied in public statements, and it really drives me nuts.

As a Ph.D. scientist, I think your answers will be thought-provoking. I’d like to ask you pointed questions and let you answer them. Your writing has shown me you aren’t a spin doctor and will answer things like a scientist, not a partisan. Despite my delight in provoking people I consider to be idiots (Orac), I actually do enjoy debating this issue, because my only genuine interest in all this is helping my son. If it really wasn’t the antibiotics and vaccines that got him, I’m wasting a hell of a lot of time and money treating the wrong things.

My request for the interview has nothing to do with Offit’s website, so no conditions here, I just hope you’ll consider the interview for its own sake. There are a lot of extremely smart parents on our side of the table, and I’d like to see the different reactions a thorough and measured interview with an “opposition figure” brings.

Ball is in your court,

JB Handley

On Apr 29, 2011, at 2:36 PM, Matt Carey wrote: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/

Matt Carey

May 2nd:

Are you going to take 5 months to respond again?JB Handley

May 5th:

Just an fyi that pauloffit.com was unlocked and an email sent to Dr. Offit making it available to him was sent Tuesday afternoon this week. Case closed. The offer stands for an interview to be posted at AoA, thanks, JBJB Handley

May 13th: I added this comment to the blog post:

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 apology was premature.

May 13th:

Matt:The site was offered to Paul Offit. It was also unlocked. After 3 days, apparently no one had claimed it, at which point anyone could. I can’t make Offit take it, maybe he didn’t so you guys could say I re-traded. Whatever, I did my part. Offit could confirm he received an email offering it to him. Don’t bother writing back, I have conceded I was wrong, and honored my end of the deal, JB

My email to owner of domain:

On Mon, May 2, 2011 at 10:23 PM, JB Handley <[redacted]> wrote:

Hey

– Give the site back to Paul Offit, or at least give him the right to register the domain name. Can you do that?Please email the right to the domain to: offit@email.chop.edu

It’s a long story, but basically I lost a bet. JB

From: [redacted]
To: JB Handley <[redacted]>
Subject: Re: Do you have anytime in the next few days?
Date: May 3, 2011 9:32:08 AM PDT
Hi JB -Step 1 of 3 is done:

The http://www.pauloffit.com site has been updated.

The domain is unlocked and anyone can request a transfer. Once that request is submitted, you’ll get an email at “[redacted]” to confirm that transfer. Additionally, I used Register.com’s transfer process, using the “chop.edu” email address below that you gave me.

– [redacted]

JB Handley

May 14th (comment posted on a few blogs, including here)

Todd:Dr. Offit is lying, as usual. On may 3rd, Dr. Offit received an email from register.com offering the transfer of the site to him. After 72 hours, Dr. Offit had not claimed it and the site was available to anyone to register. The email where the register.com transfer was sent was provided to me by Matt Carey, who directed me here to find it:

I even sent Mr. Carey a note on May 6th advising him of that and offering to interview him for AoA, in the spirit of closing the gap between us, to which he has never responded, here’s the contents of that email:

Just an fyi that pauloffit.com was unlocked and an email sent to Dr. Offit making it available to him was sent Tuesday afternoon this week. Case closed. The offer stands for an interview to be posted at AoA, thanks, JB

Someone is lying to you, JB Handley

May 15th:

Matt:Below is completed transfer. I sent Offit first notice on May 3rd, 12 days ago – FUCK YOU for publicly saying I didn’t!!

“After Mr. Handley emailed me I replied that he could transfer the domain directly to the Offits. He never contacted them.”

When I say I am going to do something, I do it.

And, you don’t even have the courtesy to respond to my emails or interview request. Man up,

JB Handley

Begin forwarded message:From: “J.B. Handley” <[redacted]>
Date: May 15, 2011 6:02:29 PM PDT
To: “’[redacted]’” <[redacted]>
Subject: FW: Register.com – Transfer of Registrant is completed

J.B. Handley
——-Original Message——-
From: support@register.com [mailto:support@register.com]
Sent: Sunday, May 15, 2011 1:01 PM
To: J.B. Handley
Subject: Register.com – Transfer of Registrant is completed

Dear Valued Customer,

This email serves as a notification that the Transfer of Registrant for pauloffit.com from JB Handley to Paul Offit has been confirmed and processed successfully. Please note that the services associated with the domain are not transferable when a Transfer of Registrant takes place, any service previously in place for the domain must be repurchased if you wish for it to be reinstated.

If you have any further questions about this process and wish to consult with a Customer Service Representative you can contact us 24 hours a day, 7 days a week, by submitting a request online at http://help.register.com/cgi-bin/register_help.cfg/php/enduser/ask.php or by contacting one of the numbers below.

Thank you for choosing Register.com.

Note that this last email was sent just yesterday. The previous one was sent Friday. I was at IMFAR then, and have been either at the conference, traveling, or getting caught up at work since.

I can be pedantic and stand by my statement on May 13th: Did Mr. Handley contact Dr. Offit in early May? No. Are there other inconsistencies in the above set of exchanges? Yes. Is there value in stressing that point? No.

Mr. Handley chose a third person, who chose register.com to contact Dr. Offit. Is it possible that Mr. Handley and whoever was running pauloffit.com are not aware of that “unlocked” doesn’t have to mean “available for anyone to register”? There should be a key to effect the transfer. There’s a lot of chance there for the ball to be dropped. Neither Mr. Handley nor myself has access to Paul Offit’s email to confirm what did or did not get through. We can say that Dr. Offit has commented that he was not contacted. Given his interest in obtaining this domain, I don’t see the need to question that he would have acted on an email if it came.

I think many people, myself included, thought that a third person had grabbed the domain and that it was lost. At one point I did try to check on the registration status of the site, and I found that it was not available. If it did stay in Mr. Handley’s (or his agent’s) possession this whole time, it strikes me odd (to say the least) that the site was redesigned given the commitment that Mr. Handley made to stop commenting about Dr. Offit.

Earlier today I participated in a chat session with someone at register.com. I was still a bit confused about everything, so I would ask better questions if I had another opportunity. For one thing, I was under the impression that the site had been transferred to someone other than Mr. Handley (or his agent) and Dr. Offit. Here is that exchange:

Rob A.: Hi, my name is Rob A.. How may I help you?
Matt Carey: I’m looking for information about how register.com transfers domains
Matt Carey: I was involved in a recent transfer. The original owner of the domain set up the transfer by email with your team, who contacted the person to receive the domain. When no response was received by register, the domain was unlocked and someone else took the domain.
Matt Carey: Is this standard practice with Domain? It seems odd that the domain would be just unlocked
Rob A.: Could I get the dom,ain name in question pelase?
Matt Carey: Here is what I was told: the recipient “…received an email from register.com offering the transfer of the site to him. After 72 hours, [the recipient] had not claimed it and the site was available to anyone to register. ”
Matt Carey: pauloffit.com
Rob A.: Thank you
Matt Carey: The domain is now, finally, been transferred to the correct person. But originally, we were told that the domain had been unlocked and transferred to a third party.
Rob A.: I see that the transfer was successful from one account to the other
Rob A.: That may have been send in error as I do not see that in our system
Rob A.: Sorry
Matt Carey: Is it the policy of Register.com to simply unlock a domain after 72 hours?
Rob A.: no.
Matt Carey: Is it possible to tell me if a third party did posses the domain for a short period? Someone other than Mr. Handley (the original owner) and Dr. Offit, the current owner?
Rob A.: Not according to our system
Rob A.: It went from one account to the other
Matt Carey: Thank you very much for your time.
Rob A.: Thank you for visiting Register.com – Don’t just make a website – Make an Impact!
Rob A. has disconnected.

Are Mr. Handley’s statements accurate? No. For one thing, the site was not left open for anyone to register. Is that a lie? Not in my book. Let’s just say that Mr. Handley and his agent didn’t understand how domain registration transfers work. I certainly didn’t a few days ago.

Mr Handley stated on his blog: “I kept a screen shot of the confirmation of emails sent from register.com.” He has not shared those with me.

Mr. Handley is correct that I should have responded to his request for an interview. For that, I do apologize. I could brush it off as being due to Mr. Handley’s demeanor which, frankly, I do not care for. However, that would be blameshifting. Crafting a response was not straightforward as it may seem. I try to keep the exchanges respectful, if sometimes critical. Given that this is overdue, let me post my response here:

Mr. Handley,I appreciate your offer of an interview with your blog. I believe that in my many posts I have made my positions quite clear. It is very difficult to craft a response that would not come across as a slam. Suffice it to say, I would not willingly add my name to the Age of Autism blog. If at some point in the future, the focus of the Age of Autism were to shift to one which actually advances the needs of children like mine, and the adults whom I see as allies, I would be happy to consent to an interview. Until that time, I consider this matter closed.

Matt Carey

To respond to the obvious criticism: I have still not responded to Mr. Handley by email. I leave it up to you, the reader, to tell me if you would respond to the emails of the tone above. I feel quite comfortable with my decision.

This response by Mr. Handley puts a major damper on the optimism I felt coming from IMFAR. I spent a lot of time with people, a few of whom are on “the other side of the fence”. It was very refreshing to sit down with people, disagree and still feel kinship for those people. There was at least one person whom I wish I had approached and spoken to, if only to express the fact that I hold that person in high regard, even though we have disagreed. But, on the whole, I came away with something I didn’t expect: a sense of hope. It isn’t about people agreeing. It’s about people of differing opinions working as allies. It is also about accepting the science. Accepting the facts as they come in. It’s also about not causing harm to the autism communities and to public health.

Note: this article originally ran on May 17th. In our transition to a new hosting service, the post was lost. I’ve copied it over from the Google Cache version.

ASF Strongly Supports Combating Autism Reauthorization Act of 2011

27 May

The Combating Autism Act (CAA) “sunsets” this September. That means that the mandate to focus the U.S. government’s research efforts will end. This doesn’t mean that autism research will stop being funded, but it means that the IACC will end, and a commitment to specific funding levels will sunset.

Here is a statement by the Autism Science Foundation on the re-authorization of the CAA:

The Autism Science Foundation (ASF) strongly supports the Combating Autism Reauthorization Act of 2011 (CARA) introduced today by Senator Robert Menendez (D-NJ) and Senator Mike Enzi (R-WY) in the United States Senate and by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA) in the United States House of Representatives.

The new bill reauthorizes the Combating Autism Act of 2006 (CAA), which has played a critical role in advancing autism research and treatment. The original CAA, set to sunset on September 30, 2011, expanded federal investment for autism research through NIH, increased services, diagnosis and treatment through HRSA, and enhanced surveillance and awareness efforts by the CDC. The CAA authorized nearly $1 billion in federal research spending over five years—increasing autism research spending by almost 50 percent. This research has led to improved understanding of the causes of autism and has helped us begin to develop new interventions. Additionally, the research funded through CAA has increased the ability of professionals to more properly screen, diagnose, and treat individuals with autism. The Combating Autism Reauthorization Act of 2011 ensures that the programs established under the original law continue for an additional three years, including CDC surveillance programs, HRSA intervention and training programs, and the Interagency Autism Coordinating Committee (IACC).

The Autism Science Foundation strongly supports this new legislation and urges all members of Congress to act swiftly to pass it into law. We thank Senator Menendez, Senator Enzi, Congressman Doyle and Congressman Smith for their continued focus on the needs of individuals with autism and their families. We look forward to continuing to work with them and the broader autism community to ensure passage of this important legislation. At an IACC meeting earlier this year, the Obama administration pledged to support CARA and to sign the bill into law upon passage.

The Autism Science Foundation is 501(c)3 public charity. Its mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

Perhaps this time I’ve gone too far….

19 May

OK, it isn’t me that’s gone too far this time. It’s Alison Singer of the Autism Science Foundation. Here’s her message:

What won’t I do to raise money for autism research? This time, I’ll be riding on the back of a motorcycle from Rockville Centre NY to the Montauk Lighthouse with the AML Bikers for Charity, who have chosen to support the Autism Science Foundation with their ride again this year on June 13. Am I scared? In a word, YES!. But not as scared as I am that we are not funding autism research fast enough. Having just returned from the International Meeting for Autism Research, I am more optimistic than ever that we are on our way to finding new treatments and eventually a cure for autism, but there is still a lot of work ahead of us and we need your help.

Please sponsor me as a rider in the AML Bikers for Charity by clicking on this link and then clicking the “donate” button underneath the thermometer. Your support will mean more funds for research that will make a difference for individuals with autism and their families.

The Autism Science Foundation is a 501(c)3 public charity. Donations are tax deductible to the full extent allowed by law. Learn more about ASF at www.autismsciencefoundation.org.

Here’s the donation link again: https://ssl.charityweb.net/autismsciencefoundation/activities/alisonsinger.htm

Want to join the ride? Click here to learn more and register as a biker.

Thank you so much!

Alison

Interviews from IMFAR: Alex Plank brings the conference to the public

18 May

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

Geraldine Dawson Interview

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