Archive | May, 2010

The Autism Hub

7 May

As many will know, the Autism Hub has been put on hiatus. Many will also know why but if you don’t the reason extends to cyberbullying between a minority of members and their misogynistic attitudes to others on the Hub. The Admin team of the Hub had no choice but to put the Hub on hiatus as I see it.

BUT. I hope this is a temporary hiatus. The world needs a place like the Autism Hub, a place which has transformed itself from its first incarnation when I built it of a blog aggregator of blogs that followed a neurodiversity creed into something much more than that. It became an ideal, a banner which stood in lots of peoples minds – both autistic, NT and other forms of ND – as a force for good if I might be so simplistic. In a web that was covered with material about how awful autism was, it was refreshing to read material that challenged that simplistic view. And whether the blog was written from a standpoint of pure autism advocacy or a standpoint of tackling the antivax arm of autism (and all the flavours in between), refreshing it was and for me refreshing it remained.

One highlight was seeing autistic people and their NT allies presenting material under the banner of the Hub at San Diego University. Thats when I realised how much the Hub had changed beyond my own simplistic view of what it was.

By that time of course I had given up ownership and control of the Hub so the credit for that achievement did not lie with me but with the two current admins. It was they who oversaw the transition of the Hub into a flagship of ideas and I was thrilled to see it happen.

However, more than the admins, the formation of the Hub is made up of its members and they more than anyone dictate what the Hub should be. Sadly this meant for the Hub that some members took advantage of this liberty and thought that meant that in an effort to carve out their own identity it gave them free reign to abuse other Hub members.

And so we’re in the situation we are now where the actions of a few have impacted on something that gave great benefit to many. That abuse has led to a situation where the Hub cannot be administrated effectively without the current Admins effectively becoming full time unpaid administrators. Something that it neither fair nor feasible.

I don’t have any firm and fast idea about what to change or how but I do know that for Hub members, this is – as it ever has been – YOUR hub, powered by you for no ones financial gain and for all of our intellectual and moral gain. To lose it because of the actions of a few people goes beyond a shame and verges on tragedy. Do you really want to leave something – or see this something die – because we cannot deal with rogue members? Now is the time for all of us who are members to have full, frank and open talks about the FUTURE of the Hub, not to lament its golden past. So please – fellow members – lets talk.

Extra clause added into UK Equality Bill

6 May

An extra clause has been added into the UK Equality Bill that will come into force in October of this year. The new clause was drafted specifically to cover cases where people (e.g. family members) are ‘associated’ with the person with a disability in question and reads;

Clarifies protection against discrimination by association, for example in relation to a mother who cares for her disabled child

This follows the case of Sharon Coleman who had to go to the European Court wo delivered the following verdict:

…discrimination law is there to combat all forms of discrimination, including those connected to protected groups of people.

The new Clause should prevent the necessity of taking the case to the European Court and will allow such cases to be settled at UK level.

Green Our Vaccines: science, slogan or smoke screen?

5 May

In June, 2008, Jenny McCarthy of Generation Rescue led the “Green Our Vaccines” rally in Washington. The stated reason for the rally was to “Demand Congress take action to Green Our Vaccine Supply while reassessing our current vaccine schedule.”

They weren’t anti-vaccine, they were anti-toxin.

How sincere was this movement?

Consider this question and answer from Jenny McCarthy’s interview for Frontline:

Tell me about “Green Our Vaccines” and what you want to happen.

I don’t think there is a green vaccine. The purpose in our statement of Green Our Vaccines really is: Let’s take a look at our environment. Let’s take a look at some of these toxic ingredients and pull them out. Let’s take a look at a safer schedule. I mean, our motto was “Too many, too soon” with the Green Our Vaccines march. And like I said, it’s not like I’m looking for a Whole Foods version of a shot. We’re looking for just a smarter and safer one in that title of Green Our Vaccines.

Repeated for emphasis–“I don’t think there is a green vaccine”. Sort of vague there. Is she saying there can be no green vaccine? That’s how I read it at first. Considering that Jenny McCarthy considers the active parts of vaccines (bacteria and viruses) to be “toxic” ingredients, I’m not sure if she can believe in a green vaccine.

So, was it really about “too many too soon”, the vaccine schedule? No. It’s still mercury. Consider Generation Rescue’s mission statement from their tax form (dated 2009-11-16). (click to enlarge)

Mission Statement for Generation Rescue

My own rough transcription:

Generation Rescue, inc. has a four point mission. Gather information that exists about mercury toxicity and publicize the truth so parents can make the best decision to help their children heal. 2. Organize doctors to treat the millions of affected children through education and conference sponsorship. Sponsor research to further the understanding between mercury and neurodevelopmental and other health disorders and to help organize the cure for mercury poisoning. 4. Support legislation to ban the use of thimerosal in medicine on a worldwide basis.

The mission statement has nothing about “green vaccines” or “too many too soon” or any of the talking points. Just mercury.

Why bring this up? Is anyone surprised that “Green Our Vaccines” and “Too Many Too Soon” are just slogans?

Well, it is worth bringing up from time to time. Generation Rescue would like you to believe that there has been a big fail by the public health establishment. They would like you to believe that the government has been avoiding looking at “the schedule” and has only looked at “one vaccine and one ingredient”.

Well, one ingredient is exactly what Generation Rescue’s mission is all about.

As long as the tax form is available, take a look. Jenny McCarthy seems to be good for generating new revenue. GR brought in $1,185,255 in 2008. Pretty respectable. That’s up from $424,698 the year before.

Generation Rescue’s expenses went up to. They spent $229,213 fund raising alone. This was part of total expenses totaling $745,238.

Let’s break that down a bit. Of the total expenses, $220,654 went to “MARKETING &AWARENESS COSTS”. Let’s consider that to be part of GR’s mission, spreading the word.

What does that leave? Expenses of $524,584. Or, about 44% of the donations.

Another way to look at it: if you donate a dollar to Generation Rescue, 44 cents goes to overhead.

Of course, one could compare Generation Rescue to Autism Speaks, who takes in $66,000,000 in order to put out $27,000,000 in grants–or about 41 cents on the dollar goes to the mission. Autism Speaks has about $14,000,000 in fund raising expenses and about $18,000,000 in salaries.

Ah, but I am getting off topic.

Generation Rescue has a single mission. The same mission they’ve always had. They appear to expanding to “too many too soon” but, in reality, it is just about mercury.

Maternal Infection Requiring Hospitalization During Pregnancy and Autism Spectrum Disorders

4 May

One known possible environmental cause of autism is rubella infections in the mother during a pregnancy. This can lead to a condition called “Congenital Rubella Syndrome”. Many with CRS have very significant disabilities, including intellectual disablity and autism.

The epidemiological team at Aarhus, Denmark, has taken this one step further and looked at maternal infections in general. What they found was that viral infections in the first trimester and bacterial infections in the second trimester are associated with a roughly 3 times greater risk of autism for the child. The infections noted were severe enough to warrant hospitalization.

Maternal Infection Requiring Hospitalization During Pregnancy and Autism Spectrum Disorders.
Atladóttir HO, Thorsen P, Ostergaard L, Schendel DE, Lemcke S, Abdallah M, Parner ET.

Exposure to prenatal infection has been suggested to cause deficiencies in fetal neurodevelopment. In this study we included all children born in Denmark from 1980, through 2005. Diagnoses of autism spectrum disorders (ASDs) and maternal infection were obtained through nationwide registers. Data was analyzed using Cox proportional hazards regression. No association was found between any maternal infection and diagnosis of ASDs in the child when looking at the total period of pregnancy: adjusted hazard ratio = 1.14 (CI: 0.96-1.34). However, admission to hospital due to maternal viral infection in the first trimester and maternal bacterial infection in the second trimester were found to be associated with diagnosis of ASDs in the offspring, adjusted hazard ratio = 2.98 (CI: 1.29-7.15) and adjusted hazard ratio = 1.42 (CI: 1.08-1.87), respectively. Our results support prior hypotheses concerning early prenatal viral infection increasing the risk of ASDs.

Transcripts of the Rashid Buttar hearings–a peek at how alternative medicine treats autistic children

4 May

Dr. Rashid Buttar was recently reprimanded by the North Carolina Medical Board. The reprimand was basically a slap on the wrist. A weak one at that.

The inquiry into Dr. Buttar discussed a number of his patients. One, patient E, was autistic. Dr. Buttar has allowed us to read about his practice by posting the testimony from the hearings.

This, from the opening statements for Dr. Buttar’s hearing:

Patient E is a pattern-in-practice patient. Patient E is an eight-year-old school girl who is severely autistic. Her mother contacted the Board after receiving a solicitation from Dr. Buttar to support him in this matter.
Like the ?- like the cancer patients, Patient E’s mother came across information that Dr. Buttar could help her child’s autism. And without ever seeing the doctor, without ever traveling to North Carolina, Patient E was sent a kit to ?- to basically self-administer a chelation therapy on her own daughter.
And when things started going ?- deteriorating for Patient E, Patient E’s only interaction with Dr. Buttar was through his nurse practitioner or other staff members in his office.
And the nurse practitioner who essentially, from the medical records, as you will see, made all decisions about the treatment and diagnosis of this child’s autism across state lines without personally seeing the patient, has no formal training in autism or oncology, much like Dr. Buttar who does not have any formal training in oncology or autism.
Yet, nonetheless, they convinced Patient E’s mother to take the child off of her medication so that he can apply a transdermal chelation cream on the child. A cream, not so coincidentally, that is developed and invented and sold directly by Dr. Buttar to his patients.
The mother did as instructed and took her daughter off her medication and applied Dr. Buttar’s transdermal chelation cream. Her daughter began to deteriorate. The child began to have violent tantrums. She couldn’t leave the house or attend school. During the weeks and months as the child deteriorated, Dr. Buttar never followed the child.
And when the mother did not get a satisfactory responses to her concerns, she called the office, made an appointment to see Dr. Buttar and drove her family to North Carolina. However, when she got to North Carolina, she did not see Dr. Buttar, only the nurse practitioner.
And the result of that meeting was that the nurse practitioner attempted to convince the patient ?- the patient’s mother that the child needed to be converted to a more aggressive intravenous form of chelation therapy.
The evidence will show that Patient E’s situation mirrors that of the other patients. Little or no physician involvement with the patient. Patients are seen primarily, if not exclusively, by the nurse practitioner. The patients have serious illnesses and Dr. Buttar and his nurse practitioner have no formal training in those illnesses.
The patients are prescribed expensive treatments that come straight out of their pocket because insurance does not pay for the treatments. The treatments are arbitrary, one size fits all. They have no basis or evidence of science. The therapies are ineffective and not been subjected to clinical trials and are potentially unsafe.

Dr. Buttar did not see the patient. She was in a different state, after all. But, her mother drove her to North Carolina to see Dr. Buttar and he still didn’t see her?

Without seeing her, he took her off her other medications and gave her his own–and she became worse.

Here are sections from the actual testimony.

Q And your daughter never made a personal visit to Dr. Buttar’s office prior to these treatments?
A That’s right.
Q When you had these telephone consultations with Dr. Buttar’s office, did ?- was it with Dr. Buttar?
A No.
Q Who was it with?
A With Jane Garcia.
Q And who is Ms. Garcia?
A I understand her to be his nurse.

Dr. Buttar was not in contact with the family. His nurse practitioner was handling the case. Remotely. Without seeing the patient.

Q Okay. Did Ms. Garcia ever make any recommendations about what to do with your child’s medication she was presently on?
A Yes. She insisted that we remove my daughter from the medication or they would not pursue the treatment.
Q What medication was your daughter on?
A Lexapro for anxiety ?-
Q And ?- and how long did ?- how long had your daughter been on Lexapro?
A About a period of a year.
Q And who prescribed that Lexapro?
A Her local pediatrician.
Q Did Dr. Buttar’s office consult with your local pediatrician when they recommended that she be taken off Lexapro?
A No, they did not.
Q And at some point what happened to your daughter after she started ?- after you started self-administering this chelation cream?
A Initially, it was uneventful, but she began to deteriorate, regress is how it’s referred to, and the regression was extremely significant. We were unable to even get her to come out of the home when she had previously been very social and happy. She wouldn’t wear clothes. She was no longer sleeping through the night. She wasn’t eating properly and she was extremely restless.
Q Okay. And did you consult Dr. Buttar’s office about these issues?
A Absolutely.
Q And what was the response?
A That we just needed to continue because this was to be expected, that she was moving metal and that we just needed to keep doing what we were doing.
Q Okay. And ?- and did you continue to do that?
A Yes.
Q And at some ?- and how did your daughter respond even after you continued the ?- the treatments?
A She just continued to get worse.
Q And at some point did ?- what did you do after that?
A Well, we had made an appointment to come to the office in person and we had hoped at that point, with an in-person physical examination by the doctor, we would get some remedy and advice for the significant amount of deterioration we were experiencing.

Dr. Buttar’s office pulled the young girl off of her anxiety medication. They had the family apply a trans-dermal chelation cream. The girl started to “deteriorate”

Q And I’ll read to you a note and ask you to comment. It says: Discussed plan with Jane, concur on issue regarding Lexapro, reassess patient that worsening is to be expected due to Herxheimer’s response and due to mobilization. Due to age consider IV challenge for best metal yield.
Is that when you talked ?- is that when you and Dr. Buttar’s office began talking about ?-
A I’m sorry, can you repeat that? My phone calling interrupted.
Q I’m sorry. It says: Discussed plan with Jane, concur on issue regarding Lexapro. Is that when you had a conversation about taking your child off Lexapro?
A Yes, but I hope that’s not referring to me concurring.
Q Okay. And above that there’s a typed note that says: Plan to wean off Lexapro, discussed with Dr. Buttar.
But is ?- were you having conversations with Ms. Garcia to take your child off Lexapro and then start this chelation therapy for your child’s autism?

Dr. Buttar suggested a “challenge” chelation test. Here is what the Americal College of Medical Toxicologists has to say about “challenge” testing:

It is, therefore, the position of the American College of Medical Toxicology that post-challenge urinary metal testing has not been scientifically validated, has no demonstrated benefit, and may be harmful when applied in the assessment and treatment of patients in whom there is concern for metal poisoning.

I guess I am curious as to why Dr. Buttar thought an IV chelation was needed for the challenge. If his trans-dermal cream chelates, shouldn’t that be sufficient?

Q I’m sorry. It says: Discussed plan with Jane, concur on issue regarding Lexapro. Is that when you had a conversation about taking your child off Lexapro?
A Yes, but I hope that’s not referring to me concurring.
Q Okay. And above that there’s a typed note that says: Plan to wean off Lexapro, discussed with Dr. Buttar.
But is ?- were you having conversations with Ms. Garcia to take your child off Lexapro and then start this chelation therapy for your child’s autism?
A Yes, we had discussed it twice.
Q Okay. And ?- and then you began the autism treatments in January, correct?
A Correct.
Q And how did the materials get to you?
A By the mail.
Q And ?- and was there any lab testing involved?
A Yes, routine lab testing was urine, stool, hair.
Q And who did this lab testing?
A Either we did or if it required a blood draw, a local phlebotomy clinic.
Q And all this was occurring in Michigan?
A That’s correct.
Q And when your daughter got the chelation cream, who administers that?
A We did, the parents.
Q And how did you do it? Did you do it pursuant to instructions from Dr. Buttar’s office?
A Yes.
Q And ?- and all this is occurring without you ever coming to North Carolina to see Dr. Buttar or his nurse practitioner?
A That’s correct.
Q Did you have to send money to Dr. Buttar’s office before these materials were sent to you?
A Yes.
Q How much money did you send?
A The initial was right at $3,000.
Q Okay. You talked about your daughter deteriorating and then you said you made an appointment to see Dr. Buttar. Approximately when was that?
A Approximately April.
Q And what happened after you made that appointment?
A We were ?- we did another round of testing that was expected to arrive in the office prior to our visit for a review on that and other than that, we simply prepared for the trip.
Q Okay. When you got to North Carolina what ?- did you go to Dr. Buttar’s office?
A Yes.
Q Was he there?
A No, he was not.
Q Who did you see?
A Ms. Garcia.

Yes, Dr. Buttar charged $3,000 for them to work with his nurse practioner. They made an appointment to travel from Michigan to North Carolina (a distance of over 800 miles) and Dr. Buttar did not see them. His nurse practitioner saw them and did not examine the patient:

Q (By Mr. Jimison) Okay. Did you have a meeting with Ms. Garcia?
A We did.
Q Did Ms. Garcia examine your child during that meeting?
A She was in a room, but she didn’t have an examination, no.
Q Okay. And what was the result of that meeting with Ms. Garcia?
A The large part of the meeting was the — for lack of a better word — sell — to first do IV chelation.
Q And ?- and did you do that?
A No, we did not.
Q And why not?
A My daughter was already significantly deteriorating and appeared to be very sick and there was no way we were going to go get a more aggressive form ?-
Q Okay.
A?- when we haven’t even seen the doctor.
Q And how is your daughter doing now?
A She’s fine, she’s much better.

The young girl is doing much better since leaving Dr. Buttar’s care.

I’ve kept the commentary to a minimum. Take a read. Tell me what you think. Take a look at the actual transcripts and let me know if I’ve been cherry picking.

Frontline’s Vaccine War episode ignites…well, a war of words

3 May

I first heard about the Frontline episode on “The Vaccine War“, it was from supporters of Jenny McCarthy. They were online telling us all about this upcoming episode and even providing links to where we could order the DVD.

Times have changed.

The show aired and it was not about how Jenny McCarthy and the rest are right and that vaccines cause autism. Jim Carrey had made a statement a while back, “We aren’t the problem. The problem is the problem.” Aside from the fact that it is a very strange way to phrase what he wanted to say, Frontline showed that, yes, indeed, you are the problem.

The night that The Vaccine War aired, Dr. Jay Gordon (Jenny McCarthy’s pediatrician) blogged about how his interview was left out. Jenny McCarthy followed shortly afterwards. Both were on the Huffington Post. Dr. Rashid Buttar was also interviewed and not shown. He took to a free press release to express his opinion.

Since then, many people have been claiming that Frontline should have given more time and weight to the vaccine-causation side. I guess representatives from a “Parent Founded, Parent Led” organization are not enough weight. They need the opinions of some doctors. As Kim at the Countering Age of Autism blog points out, the Age of Autism blog put their piece complaining about Frontline twice. AoA just changed the title and a bit of the introduction.

The editors of the Frontline episode have responded to the criticisms that some interviews were not aired:

Many thanks for your feedback on the program. FRONTLINE went to considerable lengths to include a wide range of viewpoints, even in the face of very strong scientific evidence against the hypothesized autism link to MMR and thimerosal. Despite the consistent negative epidemiology and the definitive verdict of the federal vaccine court, we included views from people who wanted more and different studies. The program also gave a great deal of time to the arguments of vaccine hesitant parents who think the CDC schedule is bloated. The companion FRONTLINE website contains full interviews with different stakeholders, including Dr Robert Sears, who promotes an alternative spread out vaccine schedule. The website also hosts a robust public conversation where a full range of viewpoints are being aired and engaged.

When making long form documentaries like FRONTLINE, it often happens that some interviews don’t make it into the finished program. Several interviews failed to make the final cut of “The Vaccine War”–not just yours but also interviews with contributors who support the CDC vaccine schedule.

One interview which did not air was that of Arthur Allen. He has commented on a few blogs. Not complaining about his interview being cut, but about people like Dr. Jay who don’t understand that in journalism these things happen. Interviews get cut.

That all said, let’s consider the argument that Frontline should have aired more of the vaccine-skeptic viewpoint. That people like Rashid Buttar should have been given more air time. Dr. Buttar, who was recently reprimanded by his state’s regulatory agency. Dr. Buttar who has used urine injections on autistic children.

For those who would like to have seen more of the opinions of such doctors, consider if Frontline does another episode entirely. This time, instead of “the Vaccine War”, they consider a show on “Curing Autism”, showing alternative medical practitioners.

I bet at this point many in the biomed community are saying, “yes!”

I put it to them that they didn’t learn their lesson. There is no good evidence behind the alternative medicine used in autism. Just like they thought that “The Vaccine War” was going to finally tell their story, another Frontline episode would not go their way. Yeah, it would tell their story, just as The Vaccine War did.

Let me put it another way. Think of two short words….Trine Tsuderos. I could have just as easily said Pat Callahan, as she worked with Ms. Tsuderos on the articles at the Chicago Tribune, but somehow it is Trine who gets the attention. It is her name that calls up the memories.

For those asking “Trine who?”, Ms. Tsuderos and Ms. Callahan wrote a series of articles for the Chicago Tribune. One article should give you an idea of how that series went: Autism treatments: Risky alternative therapies have little basis in science.

You see, the team of Callahan and Tsuderos took a look at alternative therapies and gave some balance–they asked the experts in areas such as neuroinflammation in autistics whether the alt-med practitioners were correctly applying the science. They weren’t.

So imagine if you will, Fronline putting Dr. Jay, Dr. Bob, Dr. Buttar’s interviews on the air. Together with Dr. Geier and his “lupron protocol”. Together with Prof. Boyd Haley and his industrial chelator turned nutritional supplement. Together with people “treating” neuroinflammation before they know whether it is harmful or beneficial.

Consider that team. Then consider the responses from experts in medical toxicology. Experts in neuroinflammation. Experts in hormones and autism.

Consider how that would play out before the American public.

It would not go well for the alternative medical community. Not because of any bias, but because their “science” is woefully poor.

High powered vistors to the IACC meeting

3 May

The Interagency Autism Coordinating Committee met last Friday. The agenda included talks by Department of Health and Human Services secretary Kathleen Sebelius, National Institutes of Health director Francis Collins and White House Staffer Mike Strautmanis.

Let’s put this in some perspective. Secretary Sebelius is one step down from the President of the United States in the Executive Branch of government.

The IACC is already chaired by the director of the National Institute of Mental Health, Dr. Thomas Insel. Dr. Insel holds a rather high level position to be chair of this committee, indicating a strong commitment to the IACC. Dr. Collins would be, in effect, Dr. Insel’s boss. His presence at the IACC meeting is significant.

The White House sent Mike Stratmanis is chief of staff to Valerie Jarrett, who is one of President Obama’s senior advisors. Mr. Stratmanis is also the father of an autistic child.

The Federal members of the IACC include a number of people at the director level in the NIH and elsewhere.

I think it is safe to say that autism research has the attention of the U.S. government.

The IACC is the focus of a lot of scrutiny and a lot of pressure. Given the importance of the IACC’s mission, some pressure and scrutiny is very much warranted. I think one can be critical of the IACC and its members–I’ve done so here on this blog. But, I think it is important for the discussion to remain respectful and factual. Often the discussion has, well, gone past those boundaries.

The IACC and Dr. Insel became part of the “enemy” to many in the online parent community when they decided to not fund vaccine-causation research.

Yes, autism research and the IACC have the attention of powerful people. This was very important last year when the President allocated large amounts of economic stimulus money to autism research. The fact that the IACC had a Strategic Plan in place to justify this expenditure should go down as one of the successes of that committee. Without the Plan, it is very possible that the Stimulus money might not have been applied to autism research.

Next year comes a major date for the IACC. The Combating Autism Act has, as most governmental programs do, a “sunset clause”. Read the Act and you will find this phrase repeated: “Sunset- This section shall not apply after September 30, 2011.”

Read the proposed budget for autism research–the final year is 2011.

I doubt that the IACC will be dissolved and that autism funding will cease in 2011. I believe autism research is a good investment for the American people and should continue. But it is time to admit to ourselves that we, the autism communities, are not entitled to this support. It can be taken away or reduced.

Finding common ground at the IACC

1 May

The Interagency Autism Coordinating Committee (IACC) met Friday. New members were introduced, including Ari Ne’eman of the Autistic Self Advocacy Network.

The autism communities are far from unanimous in goals and methods. Given the makeup of the IACC, consisting as it does of governmental agencies plus public members of organizations that have been highly critical of each other, one might wonder if it anything could get accomplished.

But, in the end, most groups have more than a single goal. And, if you remember back to your set theory lessons, that leads to intersections–overlap–common ground.

I was reminded of this watching the IACC meeting. I could only watch bits and pieces during the day. One standout part of the morning came when Jim Moody of the National Autism Association gave a public comment talking about issues of safety, elopement, drownings–preventable deaths of autistics young and old.

Towards the end of the meeting I listened to a number of people refer back to this presentation. Amongst these commenters was Ari Ne’eman. Mr. Ne’eman obviously took the idea seriously and was calling for serious consideration of how this could be implemented into the Strategic Plan, calling for input from the services subcommittee.

I know the idea of safety are not new to Mr. Ne’eman. I contacted him recently when I was preparing a piece, Search and Rescue and autistics.

The members of the IACC span a wide diversity of ideas and viewpoints. Diversity, that’s a good thing.

But, working together for the common good: that’s common ground. Ideas that span diverse organizations and viewpoints. That is a very good thing.

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