TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books and tapes that can be checked out by members at no charge.

Check out our group listings: each contains information on TACA meetings and special events as well as a contact form.

Are you wondering what happens at a TACA meeting? Watch our video.

I often receive letters from parents of children with autism, from all over the world. They are moving, gratifying, and powerful. They keep me going.

Yesterday, I received a letter that I will never forget. It was from a Captain in the U.S. Army, who has risked his life in the name of his country. He also has three sons on the autism spectrum, and he blames vaccines.

“To be honest, the vast majority of military families dealing with autism that I know, think that vaccines are the cause,” Capt. Joe Mickley told me in a phone interview. “And those include some people of very high rank in the military.”

One colleague had a son born in the same military hospital, at the same time, as his own, youngest son – the most severely affected of his three children. The two boys both developed normally together, and then began to regress at roughly the same time, Capt. Mickley said, eventually developing the same symptoms and signs of autism.

He told me that the parents of that child recently bought Jenny McCarthy’s book, Louder Than Words: A Mother's Journey in Healing Autism, and, within a week and a half of starting chelation therapy and other biomedical treatments, “that child started recovering. He started speaking again.”

This is not the last that we will be hearing from Captain Mickley. He and many other military families are getting ready to come forward and tell their stories en-masse.

It’s easy to dismiss and ridicule me (and it is part of my job description, so I don’t really care). It’s more difficult to do so to a battle hardened Army Captain. Yes, people will try. But I don’t envy them.

Here then, is Captain Mickley’s letter to me. Anyone wishing to contact him should write to Angela Warner at www.autismsalutes.com, and she will forward the letters to him.

-------------------

Mr. Kirby

I just wanted to write you a quick note to thank you for the work that you are doing toward uncovering what is happening to our children, more specifically the work that you have done for military families. I am a Captain in the United States Army, with 11 years of dedicated service to the nation.  

I have recently become disheartened with how autism is being dealt with in the military. I am the proud father of three young boys whom all enjoy a spot on the spectrum.  I read on your site and others that the military has a very high rate of dependents on the spectrum, although I would swear to you that six months ago, when autism first exposed itself in my family, my wife and I felt like we were the first family to go through this, and over the recent months I have met others whose stories are almost identical to ours.  You have helped me realize that we are not alone and that something is going on to trigger what equates to be brain damage, instead of what I thought was autism.

Sir, as I follow your words it inspires me to gather together the members of the families who have gone through the same hell as mine.  To let our voice be heard so that action has to be taken.  I and others like me would like accountability why we lost our children. I have video of my son months prior to the vaccines that I believe triggered his withdrawal. He is engaged, alert, talkative and happy.  

Following the shots, he began a steady withdrawal and decline. The most painful part was that we watched him slip away, and before I knew it, he was not the same.  We also have doctors’ records documenting our concerns as well as a military doctor’s summary stating that our concerns were more than likely unfounded.  

After visiting that doctor, we fought for more than seven months through more red tape than anything I had experienced in ten years of service to obtain a diagnosis. Little did I know that this would just be the beginning of our battle to save our boys.

As a Soldier and combat veteran of multiple tours I have fought against our nation’s enemies. I have seen the dark side of humanity and survived it. That experience pales in comparison to the horror of watching your child suffer a regression.   

Again sir, I thank you and hope that you may never grow tired in your efforts, because my family and many others count on you.

Respectfully,

State says it can’t pay for the therapy hundreds of Nevada children need

SAM MORRIS

William and Emily Spahr share a small apartment in Las Vegas with baby Owynn and his sister, Devon. Owynn, who is three months old, needs specialized therapy for an infection he was born with that can cause mental retardation, loss of hearing and sight and other problems. The state is obligated under federal law to provide or pay for the treatment, but says it lacks the money. To get the therapy for Owynn, Emily Spahr has reenlisted in the Army and will soon be leaving for Warrior School.

By Marshall Allen

Mon, Dec 15, 2008 (2 a.m.)

Related story

Economy has many enlisting, reenlisting

Sun Archives

Cuts would hurt neediest most (10-17-2008)

Autistics face rough road in LV (3-11-2006)

A Las Vegas woman is joining the Army, calling it the best way to get health care for her disabled infant — treatment the state is supposed to provide, but isn’t.

Emily Spahr, 25, says she expects to be in Warrior School next month, leaving her husband to care for their two children.

Nevada gets money from the federal government to provide specialized care for medically stricken toddlers such as 3-month-old Owynn Spahr.

But the program has grown more expensive for the state to operate, and officials say budget shortages are forcing them to withhold care for the young children. In fact, they say they’re hesitant to inform parents of disabled children of their legal rights — including that the caretakers could be reimbursed by the state if they get the therapy elsewhere — because of the cost to the state of providing the service.

Owynn was born with Cytomegalovirus (CMV), an infection that can cause mental retardation, loss of hearing and sight and other problems. Doctors say Owynn needs immediate therapy to ensure he reaches his full potential.

Owynn and about 450 similarly disabled children younger than 3, with such disabilities as Down syndrome, autism, cerebral palsy, blindness and hearing impairment, have been languishing on a waiting list for as long as a year for services to which they’re entitled.

Spahr says she won’t wait any longer for her son to get the help he needs — thus, this week she’s reenlisting in the Army, in which she had served before she and her husband, William, became parents.

Karen Taycher, executive director of the advocacy group Nevada Parents Empowering Parents, said the failures of the state’s early medical intervention program have created a crisis of profound proportions for families that qualify for help but are not getting it from the state. Waiting lists are not allowed under federal law, she said.

“Research shows over and over that early intervention is key to having these children develop their potential,” Taycher said. “If you catch these kids early they do not need the amount of care for the length of time than if you don’t catch them early.”

The state has been out of compliance with federal law for months. In July, the Nevada Disability Advocacy & Law Center, a federally mandated organization funded by government grants, filed an administrative complaint against the state on behalf of all children who have not received the services they require under the Individuals With Disabilities Education Improvement Act.

The law is the same one that requires public schools to provide adequate services for children with disabilities. It requires the state to develop an individualized plan to treat each eligible child, and to initiate it within 30 days. Each of the 450 children on the waiting list has an individual treatment plan prepared and is waiting for the state to enact it.

Early intervention services are vital because developmentally disabled children who go without treatment become more disabled, and thus more costly to care for, over time.

In November, the state responded to the advocacy group’s complaint, saying it didn’t have enough money or staff to adhere to the law. According to the investigation of the complaint by the Nevada Office of Disability Services, the state has increased its spending on the early intervention program every year, from $7.3 million in 2004 to $15.8 million in the current fiscal year. But the federal allocation has remained flat, rising from $4.1 million to $4.2 million in the same time frame.

Mary Wherry, deputy administrator of the Nevada State Health Division, said enrollment in the early intervention program has grown by 92 percent since 2004 and it’s difficult to comply with the federal law when the federal government does not begin to cover the costs.

The investigation report put it bluntly: “This is a classic federal unfunded mandate.”

The state’s response has not satisfied the advocacy attorneys because parents of children awaiting therapy are entitled to compensation for costs they’ve accrued out of pocket, or in case the children need extra services because the disability was compounded by the time spent without treatment.

But the state does not notify parents of their right to compensatory services, and that’s a failure in its responsibility, said Ruth Miller, a rights attorney for the Law Center.

“Our position is clear: Notify families of how many days they were without services and then tell them how many days they have a right to compensatory services,” Miller said.

Wherry said notifying parents of their compensatory rights would come with a cost: “Right now, if every family were educated about the compensatory services opportunity, we could be at risk for a significant amount of expenditure,” she said.

The state estimated that four months of compensatory costs to the families in the program would total $500,000. In today’s climate of budget cuts that would mean significant reductions to other state services, Wherry said.

The Law Center wants to help the hundreds of families on the waiting list file individual complaints to get the services they deserve, Miller said. But the organization doesn’t know the families’ identities.

The Law Center has also considered a filing for class due process, which would include a formal hearing where each side would make its case to a hearing officer.

The state is proposing its own remedies. A bill in the upcoming legislative session will propose requiring people to bill their insurance companies or pay a fee based on a sliding income scale, approaches taken in other states to cover the early intervention program costs, Wherry said.

Wherry said a more radical proposal is also on the table: refusing the federal money so there’s no obligation to follow federal law. Opting out would eliminate the risk of paying out high compensatory costs, or the risk of getting sued for violating federal law, Wherry said.

Opting out of the federal program would do little for the hundreds of children like Owynn Spahr, who needs therapy now.

William Spahr, whose jobs have included telemarketing and stocking store shelves, said he can’t get a job with benefits because of the recession, and he can’t enlist in the military because he has metal plates in his arm from an old injury.

Thus, Emily feels the urgency to go back to the Army, where she served as a mechanic for three years.

Sitting in the family’s cramped off-Strip one-bedroom apartment with Owynn on her lap, she says she has no other option but to return to the military. Emily is holding back tears at the thought of leaving for training and possible deployment.

Nevada has failed them, the couple say.

“I love the Army but it’s not what I want to do right now,” Emily Spahr said. “It’s the best I can do and I’m willing to do it, but it just doesn’t seem right that I have to do it.”

By John Stone

‘If we knew then what we know now we certainly would not have published the part of the paper which related to MMR, although I do believe there was and remains validity to the connection between bowel disease and autism.’

From the moment Richard Horton, editor of the Lancet, spoke these words on the BBC evening news of Friday 20 February 2004 Andrew Wakefield’s career lay in tatters. For six years Horton and the Lancet had been under pressure over his decision to publish in February 1998 an ‘early report’ Ileal-lymphoid-nodular-hyperplasia, non-specific colitis and autism in children of which Wakefield - a senior researcher at the Royal Free Hospital in London - was lead author. At publication time Wakefield was already an author of more than a hundred peer review publications, but none before or since attracted the attention of this one. The paper, a series study of 12 consecutively referred cases, related to a sub-group children who had suffered adverse reactions to MMR vaccine, and hypothesised but did not confirm a connection between their symptoms and the vaccination.

Nevertheless, by implication the study struck at the heart of public health policy: the Royal Free Medical School called a press conference, and there was instant controversy. The British government and medical establishment never forgave Wakefield. They weren’t that happy with Horton either, and he knew it.

Horton’s decision to go to the BBC in February 2004 had been precipitated by an extraordinary meeting at the Lancet offices two days previously. Wakefield’s 1998 paper had been investigated by a freelance journalist Brian Deer on behalf of the Sunday Times. According to Horton – giving evidence the UK General Medical Council in August 2007 – Deer had been dispatched with Liberal-Democrat member of parliament, Dr Evan Harris, in a last ditch attempt to rescue a failing story, held over from the previous week, and considered to weak to publish. Also present there with Wakefield, were Profs John Walker-Smith and Simon Murch, the two doctors presently on trial with him at the GMC, and another Royal Free doctor, the neurologist Peter Harvey.

Deer presented a raft of allegations about the conduct of the study, and unethical procedures conducted against the children in the study. These were rebutted by the doctors, and were neither upheld by the Royal Free or in turn the Lancet. The sticking point, however, came over the fact that Wakefield, alone of the Royal Free doctors, had been hired by the Legal Aid Board to investigate the possibility of class litigation against the MMR manufacturers. Confronted by Deer, Horton denied that he had known of this, and Deer at last had a story. Horton’s decision to go public that Friday evening anticipated the publication of Deer’s article in the Sunday Times (and comically led to him being sued by Deer in the small claims court). But Horton’s declaration on its own ignited a media explosion and by the following morning he had also told the BBC that there was “a fatal conflict of interest” and the research was “fatally flawed”. By Saturday, tea time, the Secretary of State for Health, John Reid, had requested that the General Medical Council investigate the case “as a matter of urgency”. And all before Deer’s story had gone to press for Sunday morning.

This episode smacks of gross media manipulation. Conflicts in medicine and science are commonplace  – something that hitherto would not have raised an eye-brow was being foisted on the public at large as if it was grave misconduct – and that was even before considering the truth and validity of the allegation, which at the time would have been extremely hard to establish either way, and was certainly denied by Wakefield. Four years later when Wakefield finally produced powerful documentary evidence of his innocence at the General Medical Council no one in the media reported, although several journalists – including from the BBC and The Times - were present.

The outlandishness of what had happened was reflected in a remarkable passage the book which Horton was to publish within months of the episode, MMR Science and Fiction: Exploring the Vaccine Crisis, in which he recalled his dinner engagement on the Monday following these events, and result of the Health Secretary’s immediate request that the GMC investigate:

In truth, they  (the GMC)  had not a clue where to begin. At a dinner I attended on 23 February (2004), one medical regulator and I discussed the Wakefield case. He seemed unsure of how the Council could play a useful part in resolving the confusion. As we talked over coffee while the other dinner guests were departing, he scribbled down some possible lines of investigation, and passed me his card, suggesting that I contact him directly if anything sprang to mind. He seemed keen to pursue Wakefield, especially given ministerial interest. Here was professionally led regulation of doctors in action - notes exchanged over liqueurs in a beautifully panelled room of one of medicine's most venerable institutions (p7-8)

This could almost be a comic parody of the British establishment at work if it was not for real. But Horton’s decision to turn on Andrew Wakefield has been one of the long neglected (and tragic) turning points in the Wakefield affair.

I have long been curious about Horton’s role in this saga. When I wrote recently to the president of the GMC, Sir Graeme Catto, to ask him to explain Horton’s involvement (and potential misconduct), he declined to respond, but passed my open letter to their investigatory branch. I received this reply:

In short, I can assure you that the instigation of our investigations has absolutely nothing to do with any conversations which ‘medical regulators’ may have had with Dr Horton at the dinner described in his book. If such conversations took place, they were not reported back in to our investigations team who were looking at the case at the time. This being the case, the content of any such discussions had absolutely no impact at all on any of the decisions made about whether to proceed to investigate the case or,  indeed, how such investigations should be carried forward.

How could they possibly know whether their investigations have been influenced by the conversations if they have not even asked about it, and are totally incurious even now that it has been pointed out? It does not matter by now what departures we have from ordinary process, or whether there is even prima facie evidence of misconduct. The trial must go on.

Although the  “medical regulator” Horton met that Monday evening in February 2004 did not seem concerned about the ethics of exploring ways in which Andrew Wakefield might be prosecuted (and with the star witness!), he certainly did not seem convinced that Wakefield had done anything wrong. This may have been because undisclosed conflicts of interest are so common that you could not practicably start prosecuting them (where would it end?) but also (as he may already have considered) that acting as an expert witness for the courts did not by convention constitute a conflict at all. In fact, this argument was helpfully put by a legal counsel (in the British system ‘a barrister’) Robert Hantusch in a letter to The Times the following day (24 February 2004):

... the courts do not consider that the engagement of someone to act as an expert witness in litigation has the effect that that person is then biased. Indeed, if this were the legal position, no paid professional could ever at any time give evidence to a court.

And this defence was also taken up by a witness on the other side of the case, Elizabeth Miller, when it was pointed out in the satirical journal Private Eye that she had a like conflict (if it was such):

 ...there can be no conflict of interest when acting as an expert for the courts, because the duty to the courts overrides any other obligation, including to the person from whom the expert receives the instruction or by whom they are paid. (19 March 2004)

As of the present, of course, Miller has yet to be summoned before the GMC.

But was Horton’s allegation that Wakefield had withheld information about his work with the Legal Aid Board really true? At the end of the week (27 February 2004) the Independent newspaper finally located striking evidence in Wakefield’s defence: a letter published on 2 May 1998 in the Lancet, nine weeks after the controversial study, in which Wakefield replied to a correspondent, Andrew Rouse, who raised the possibility of “litigation bias”:

A Rouse suggests that litigation bias might exist by virtue of information he has downloaded from the internet: from the Society for the Autistically Handicapped. Only one author (AJW) has agreed to help evaluate a small number of these children on behalf of the Legal Aid Board [emphasis added]. These children have all been seen expressly on the basis that they were referred through normal channels (eg, from general practitioner, child psychiatrist, or community paediatrician) on the merits of their symptoms. AJW has never heard of the Society for the Autistically Handicapped and no fact sheet has been provided by them to distribute to interested parties. The only fact sheet we have produced is for general practitioners, which describes the background and protocol for the investigation of children with autism and gastrointestinal symptoms. Finally, all those children referred to us (including the 53 who have been investigated already and those on the waiting list that extends into 1999) have come through the formal channels described above. No conflict of interest exists.

The information that Wakefield (and Rouse) were referring to was a fact sheet compiled by the legal firm Dawbarns who were pursuing a class action against the MMR manufacturers at the time, downloaded from an independent website. So, while Wakefield denied that the matter constituted a conflict he had clearly stated his involvement in the litigation at that early stage. Unfortunately, the Independent story made little difference. The BBC, with its commitment to balance and impartiality long forgotten, refused to report this (though I for one personally bombarded the head of news Richard Sambrook with emails), and only the Telegraph doctor James Le Fanu took up the issue (2 March 2004). It is worth quoting the entire passage from his column, headed ‘The truth about MMR must be revealed’:

The Government finds itself in an invidious situation over the MMR/autism controversy, having painted itself into a corner by denying parents the option of the single measles vaccine. They, thus, have no alternative other than to insist the MMR is totally safe - irrespective of evidence that might emerge to suggest the contrary.

Their difficulty is that this position is now looking a lot shakier than it did even a year ago. Several further independent studies have confirmed the association of the syndrome of regressive autism with chronic bowel disorder that was originally described by Andrew Wakefield. More recently, research has confirmed the presence of the measles virus in the gut and spinal fluid of affected children.

This may not constitute "proof" and, indeed, a former colleague of Dr Wakefield challenged the significance of these findings in the Lancet a fortnight ago - and he may be right to do so. None the less, it is beginning to look as if, as neurologist Peter Harvey points out in the same issue, there is now "a step-by-step cascade of evidence" linking the MMR vaccine to some cases of autism.

This could explain the assault on Dr Wakefield’s integrity. The validity of his original findings, it is claimed, may have been compromised by a conflict of interest involving research funds that he failed to disclose. This might be relevant if it were true, but it is not, as anyone can check for themselves: Dr Wakefield acknowledged the source of his funding in the Lancet in 1998. It would seem to be that neither the Government nor the medical establishment can afford for Dr Wakefield to be vindicated - and they are getting pretty desperate.

But, remarkably, the role of the man at the centre of the non-disclosure allegation has largely escaped public scrutiny. In MMR Science and Fiction, Horton, while elaborating on the circumstances which led him to throw Wakefield to the wolves  skirted delicately  around the evidence that Wakefield did indeed disclose his work with the Legal Aid Board.  

Critically Horton reproduces an apparently heated exchange from a parliamentary committee meeting of 1 March 2004 between Evan Harris, and the Lancet’s boss, Crispin Davis, Chief Executive of Reed Elsevier (p.50-1). Both men wave the letter of 2 May 1998 around, Davis citing the statement that there was no conflict of interest, but neither places on the parliamentary record that Wakefield had stated in that very letter that he was engaged in the litigation, and whether it was a conflict or not, it had certainly been in the public domain from that time. (But while we are on the subject of conflicts of interest, perhaps Davis needed to point out -and Horton certainly failed to do so – before becoming sanctimonious about Wakefield that he was appointed a non-executive director of MMR defendants GlaxoSmithKline in July 2003.)

When he gave evidence to the GMC in August 2007 Horton stated that he had not understood from the declaration that Wakefield’s involvement pre-dated the publication of the study two months earlier. The only trouble with this was that Rouse’s letter, forwarded by the Lancet to Wakefield on 2 April 1998, was according to Wakefield’s testimony actually dated 4 March, four days after the publication of the study – which would suggest that any such misunderstanding on Horton’s part was either disingenuous in the extreme, or simply incompetence.

The problem with Horton’s evasions was compounded by his transparently flawed account in his book of the session in the Lancet offices with Brian Deer on 18 February 2004:

There the consensus ended. Wakefield admitted that he had been commissioned by the Legal Aid Board to conduct a pilot study on behalf of parents of allegedly MMR-vaccine-damaged children. Some of his colleagues claimed that he had not disclosed this fact to them. Simon Murch and John Walker-Smith were visibly shocked by this revelation.

How anybody could have been shocked about a matter which had been in the public domain for six years is a mystery: in fact when presenting his evidence to the GMC in March 2008 Wakefield read a letter he had written in early 1997 to Walker-Smith and Murch explaining his decision to act as an expert in the MMR litigation – a line from it was subsequently quoted in a BMJ report (5 April):

If these diseases are found to be linked to the MMR vaccine, these children are the few unfortunate who have been sacrificed to protect the majority.

Thus, while there may not have been agreement between them on this, the claim that the matter was hidden from close colleagues would appear to be fanciful.

So what really happened at that meeting between the three doctors and Horton? At the GMC in August 2007 Horton described the pivotal moment of revelation as relating to the Dawbarns fact sheet which Deer had produced, which promoted the case against the MMR manufacturers and alluded to Wakefield’s involvement. It was Deer’s production of the fact sheet which purportedly caused discomfort to Walker-Smith and Murch, and left Horton denying to Deer and Harris that he had known of Wakefield’s enrolment by the Legal Aid Board.

Beyond the Wakefield-Rouse correspondence in May 1998, did Horton have any other occasion to learn of Wakefield’s Legal Aid work? Indeed, unlike Wakefield, Horton’s office itself was involved in a lengthy correspondence with Dawbarns, long before the publication of the Wakefield’s study in February 1998. In his testimony to the GMC in April 2008 rebutting Horton’s claim, Wakefield revealed stunning new information from a previously undisclosed 1997 correspondence between the Lancet and Dawbarns about the Dawbarns fact sheet to which Horton had been party. According to this exchange, at some point in March 1997, or just before, an employee of the UK Medicines Control Agency (later MHRA), Dr B D Edwards, writing in his private capacity, alerted Horton to the use of Lancet material (not the unpublished autism study) in the Dawbarns fact sheet – this included extracts from other articles by Wakefield and some tables. The Lancet then wrote to Dawbarns warning them they should apply to the journal if they wanted to continue to reproduce it. There then followed an extended letter from the lead lawyer for the case, Richard Barr, to Horton dated April 3, 1997, mentioning that Wakefield had given permission to refer to an article and citing a statement on the fact sheet:

There is convincing evidence of a link between vaccination and inflammatory bowel disease (including Crohn’s disease). It is a serious lifelong illness that has affected a large number of the children we are helping. We are working with Dr Andrew Wakefield of the Royal Free Hospital London. He is investigating this condition [emphasis added].

It was important for Barr to draw attention to Wakefield’s involvement, because it added moral weight to his case that the Lancet should allow publication. Horton wrote back denying permission and a lengthy correspondence ensued involving the Lancet ombudsman Prof Thomas Sherwood, in which a compromise was reached – this was concluded in the month of July 1997 just as the controversial study was being passed for publication, and presumably there would have been communications within the Lancet between Sherwood and Horton on the matter.

While it may have been a shock for John Walker-Smith and Simon Murch when Brian Deer produced the fact sheet in the Lancet offices because they had never seen it before, Horton claims that, in his role as guarantor of the ethics and reputation of The Lancet, it came as an even bigger shock to him because Wakefield had violated ethical guidelines by withholding disclosure of the Legal Aid connection. But when Wakefield finally produced this evidence to the GMC in April 2008 that Horton and The Lancet’s ombudsman had been engaged in extended discussions with the Legal Aid attorneys over their desire to cite work from their expert witness Wakefield in a fact sheet,  it was barely reported: not, for instance, by the BBC or by The Times  (although they had their journalists present), nor even by Brian Deer.  Only in British Medical Journal was there a half-buried account by Owen Dyer (April 19):

Dr Wakefield’s defence challenged testimony given earlier by Richard Horton, editor of the Lancet, who said that he had not known before the article’s publication of Dr Wakefield’s work on behalf of MMR litigants.

Dr Wakefield alleged that newly uncovered documents reveal an extensive correspondence between the Lancet and Dawbarns, the firm of solicitors representing MMR claimants. These letters, several months before publication of the 1998 article, described Dr Wakefield’s work on behalf of the MMR litigants, he said. While he was "not impugning Dr Horton’s honesty," said Dr Wakefield, the documents proved "in my opinion beyond a shadow of a doubt that he was aware of all these factors."

Dr Horton, reached by email while travelling abroad, denied any foreknowledge of the conflict of interest, saying that the correspondence did not make clear Dr Wakefield’s role in litigation.

In most accounts of Wakefield’s Legal Aid connection,  the media have generally accepted Horton’s description of his editorial judgement: if he had known of the connection before publication of the 1998 study he would not have approved it. But there is another possibility: that Horton only decided it was a significant matter long after the event. Indeed, two letters written by Wakefield to the Lancet on the MMR issue in (September 11, 1999 and August 26, 2000) after the disclosure of May 1998 that he was working for the Legal Aid Board were passed for publication without any such declaration.

Horton’s inconsistency was further exposed when in  2004 – after the Wakefield affair blew up - the Lancet held out for 5 months over publishing a letter from Mark Geier regarding Michael Pichichero’s non-disclosure of pharmaceutical company funding in another vaccine autism study  ‘Mercury concentrations and metabolism in infants receiving thiomersal: a descriptive study’ (2002). Pichichero’s  silence over his competing interests in  this paper stood in contrast to information revealed in an earlier study, which had the following declaration:

The author has received research grants and/or honoraria from the following pharmaceutical companies: Abbott Laboratories, Inc.; Bristol Myers Squibb Company; Eli Lilly and Company; Merck&Co.; Pasteur Merieux Connaught; Pfizer Labs; Roche Laboratories; Roussel-Uclaf; Schering Corporation; Smith Kline Beecham Pharmaceuticals; Upjohn Company; Wyeth-Lederle.

This lapse was only resolved after I had posted on it twice in British Medical Journal Rapid Responses. To all appearances this non-disclosure – which hid extensive commercial interests - was far more compromising: but to the Lancet it was barely worth mentioning, and not to be compared to the perfidy of Wakefield – indeed, they only agreed to publish a version of the Geier letter if Wakefield was not mentioned in it. Some conflicts in Horton’s world are evidently more fatal than others.

Many months after Wakefield’s evidence a new statement was finally obtained by the prosecution at GMC from Horton, presumably explaining as best he can the apparent discrepancies in his earlier evidence, but the hearing was having trouble pinning down a time for him to be questioned about it. Though Horton’s office is less than a mile up the road from the GMC hearing, he will apparently be engaged in an important peace mission to the Middle East when it next sits in January.

It was always the strategy of the British scientific establishment and government to isolate and destroy Andrew Wakefield – to make him look as if he was standing scientifically and intellectually on his own, and to make sure when they crushed him they discredited all further opposition or dissent on the vaccination issue.  In the US context Horton’s book MMR Science and Fiction would be an almost incomprehensible oddity. There is, for instance, only a single mention of thimerosal, which apparently is just another eccentric concern of Wakefield’s. In essence the alleged “vaccine crisis” of the title is entirely about Wakefield and the supposed gullibility of people who doubt official science. Horton’s book is not ultimately about scientific truth, it is about who is credible – we are being told not only is Wakefield not credible, most importantly the parents of vaccine damaged children are not credible either.  And cleverly nuanced as Horton’s argument is for a liberal readership, his decision to turn on Wakefield has behind it a highly illiberal and authoritarian basis, in which the interests and voices of the patients and their families are to be finally stamped out. It is ultimately just stage management, and a stab in the back for open debate.

 John Stone has an autistic son, and lives in London.

By Katie Wright

I did not want to write this piece or share this information.  I was hoping the leadership at Autism Speaks would take care of this problem. For far too long Dr. Andy Shih and Ms. Alison Singer have representing only their own rigid belief systems in their roles at AS, doing whatever necessary to thwart environmental and vaccine research. In the meantime so many opportunities have been squandered and our children are paying the price.

I will not editorialize here; just give the reader the facts. Families and especially AS supporters have a right to know how their children’s interests are being represented.

1) Dr.Andy Shih, VP of Scientific Affairs, is an avowed disbeliever of vaccines as a possible trigger for autism, appeared on “Montel” a few years ago. Shih vehemently argued that vaccines are totally safe, can not and do not trigger autism and that excessive quantities of mercury are perfectly safe to inject into babies and children.

Two years ago AS leadership was excited about a Norwegian study on vaccinated children and autism and promised the study designers full support. AS expressed a desire to take the lead as a funder and facilitator of the project. Shih surreptitiously killed almost all involvement.

2) Shih’s recent comments to the media include, “this issue (vaccines and autism) has really been put to bed!” regarding a tiny Columbia study on autism, regression and GI disease on a dozen children. The study only actually included 5 children who had regressive autism and GI disease and one, indeed, had the measles virus in his gut. The CDC funded this study.

I encourage all to Google Andy Shih + vaccines and read the plethora of Shih quotes about why he believes there is no merit to studying over-vaccination as trigger for autism. Shih is most frequently quoted by pharmaceutical sites and vaccine manufacturers as “proof” of vaccines’ “disproved” relationship to autism.

3) Alison Singer is in control of all media relations for AS and sits on the very important and influential IACC, as AS’ representative. Singer has also overseen AS’ multi-million dollar website. Until recently, the website was devoid off all biomedical news and information.

Singer and Shih maintain a strong professional friendship with Paul Offit, lunching with him on AS’ dime.

4) Singer called CBS “Evening News” to complain about Sharyl Attkisson’s investigative news story on Dr. Paul Offit’s financial interests in the childhood immunization program. Singer copied Dr. Lou Cooper, her AAP ally, in this complaint letter. The CBS news piece uncovered the fact that Offit had recently sold his rota vaccine patent for $104 million dollars. This discovery was, in fact, huge news to all in the autism community.

5) The IACC group had the unique opportunity to effect powerful and innovative change in autism research at the NIH. The CAA was made possible by the hundreds of thousands of parents who supported its passage. Autism Speaks promised to do everything possible to support the promotion of environmental research, including vaccine research.

After nearly a year of work the NIH’s strategic plan is currently being boycotted by the entire community. Tom Insel has done a terrible job of the including stakeholders’ opinions and priorities, yet there was a critical juncture when the plan could have been saved. Lyn Redwood and all participating parent orgs (with the exception of miniscule org. ASA) voted for the inclusion of a number of environmental research initiatives which would have SAVED this endeavor. Alison Singer, as AS’ representative, voted against the plan.

OK- those are the facts, everything is true, now for the editorial.

The fact that Ms. Singer voted against the rest of the autism community is disgraceful. Clearly Ms. Singer cannot separate her personal beliefs from the mandate of the organization she is paid to serve. The IACC plan was an opportunity of monumental proportions and now a year’s work has been squandered, thanks to her veto.

Rather then embracing the big tent concept and building bridges with the grass roots parent run autism organizations, Shih and Singer have focused their energies on building relationships with Dr. Offit (a vaccine patent holder), Ami Pisani and her pharmaceutical organization and old school geneticists. This approach is not getting us where we need to go and gravely disappoints the families who trusted AS to be better than this. It was families, not pharmaceutical reps, who brought the tremendous pressure to bear in order to pass the CAA. Now our families’ interests have been betrayed by the rigid ideological beliefs of one person who would rather see the CAA fail than encompass vaccine research.

Instead of building alliances with family based orgs like the National Autism Association, Ms. Singer’s efforts have been focused on aiding Dr. Paul Offit. Autism Speaks’ PR needed to allow Dr. Offit to take care of himself, he has certainly got the financial resources to do so. Autism Speaks should have been championing the trend of greater financial transparency in autism and vaccine science. Instead, Ms. Singer was so upset by the criticism of Dr. Offit that she called CBS news to complain about the piece. This bizarre behavior is another complete betrayal of our families’ interests and serves to further illustrate the deeply ingrained beliefs and prejudices that do a deep disservice to our families.

I do not have the time to detail the myriad of instances in which Autism Speaks PR and Rubenstein associates, worked over-time to kill or diminish stories about biomedical news. Suffice it to say it is a sad and lengthy list. We need more open debate and discussion, not less.

AS PR and AS science need not fear open discussions of the vaccine issue, what they should fear is colluding with the CDC in behaving as if parents’ voices do not matter, regressions inconsequential, GI disease insignificant, adverse vaccine reactions non-existent, all successful biomedical interventions aberrations. I may well incorrect about many things but we can never be wrong in asking questions- questions our families want asked.

Mark Roithmayr and Dr. Geri Dawson have been made well aware of Shih and Singer’s serious lapses in judgment and failure to fully represent the community. Mr. Roithmayr appears to want to ignore this situation and its adverse consequences for our children. Maybe the parents who worked so hard to pass the CAA should ask him why?

Managing Editor's note: You can email Mark Roithmayr at mroithmayr@autismspeaks.org

Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half.  Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.

Julia Berle’s son Baxter was vaccinated when he was 12 months old and Julia believes that he developed autism because of it. She cautions against the one-size-fits-all vaccination approach. Instead, Julia encourages parents to view a vaccination as a medical procedure and ask that the vaccine be individualized for their child. Dr. Tanya Altman from the American Academy of Academics advocates the use of vaccines and warns that without vaccines, disease spreads.

Watch video.

December 29, 2008 03:41 PM ET | Deborah Kotz

The American Academy of Pediatrics rolled out its new immunization schedule for kids in its latest issue of the journal Pediatrics , released today. The big change for this year is a new recommendation for an annual flu vaccine for all kids ages 6 months to 18 years—which follows the new guidelines of the Centers for Disease Control and Prevention.

Along with this policy statement and numerous research papers, the journal contains a "special article" that quite frankly shocked me for its one-sided treatment of a very important issue with regard to vaccinations. The article is an attack on doctors who take a flexible approach to vaccinations, working with parents who, say, don't want their 2-month-old to get vaccinated against eight different diseases at once, which is what's recommended on the AAP schedule.

It targets one particular pediatrician, Robert Sears, who described several alternative approaches to vaccination in a popular consumer book called The Vaccine Book: Making the Right Decision for Y our Child. Sears calls for spacing out some vaccinations by adding office visits and delaying some shots until a child is older. More controversially, he also has a plan for those who may want to skip some immunizations, such as the chickenpox vaccine. I spoke with Sears for this parents' guide to managing vaccinations.

Unfortunately, instead of allowing a pro-and-con debate about the benefits and drawbacks of pediatricians working with parents who wish to have some flexibility, the Pediatrics journal editors chose to feature just one side of this debate. The authors of the special article take a firm stand against allowing any deviation from the current vaccine schedule, arguing that in offering a middle ground, Sears is sending "antivaccine messages."

What's worse, the lead author, Paul Offit, who heads the vaccine education center at the Children's Hospital of Philadelphia, clearly has a conflict of interest. He's one of the patent holders of RotaTeq, a vaccine against rotavirus that's on the AAP's vaccine schedule. That means he stands to lose money if parents shun RotaTeq.

Offit, who didn't respond to a request to be interviewed late last week, lays out his valid concerns with Sears's book, and, as a widely respected expert in the vaccine field, his opinions deserve some attention. But he also fails to acknowledge any flaws in the government's system of monitoring adverse effects or the scarcity of good research studies that doctors could use to predict which patients may be vulnerable to adverse vaccine reactions. A host of government officials admitted there's a real need for more vaccine research, as I noted in a recent article that scrutinized vaccines.

This makes me wonder why Pediatrics chose to include this volatile paper as a stand-alone article rather than as part of a debate over what doctors should do to increase vaccination compliance. In an E-mail exchange, Sears told me he submitted a request to respond in the next issue of the journal but hasn't yet heard back from the editors. He also takes issue with Offit's slapping the "antivaccine" label on his book. Sears wrote:

The Vaccine Book is very pro-vaccine, and I believe that Dr. Offit has greatly misrepresented the book as anti-vaccine. He selectively quotes areas of the book that discuss some negative aspects of vaccines or some parental worries about shots, without revealing the pro-vaccine ideas I also share in such areas to give a BALANCED viewpoint from both sides. The vast majority of criticism I have received on the book has come from ANTI-vaccine activists who were hoping I'd come out against vaccines. That tells me I'm doing my job correctly.

You can read Sears's full rebuttal on his website.

Offit makes the argument that allowing flexibility will reduce the proportion of kids who get fully vaccinated, while Sears argues that parents will be driven away from vaccinations altogether by inflexible doctors. (For its part, the CDC recommends that doctors work with parents who wish to deviate from the schedule in an effort to get children as fully immunized as possible.)

So, which is better: a one-size-fits-all approach or a flexible one? That's a question I wish the journal editors had decided to address in a full-fledged debate.

With Jeff, things are moving at a fast pace. He is in 5th Grade and is excited about going to school every day.   I marvel at his positive attitude, his ability to keep working hard, and his progress with curriculum that sometimes I have to look at twice! (At times, I remember that TV show "Are You Smarter Than A 5th Grader?" and laugh when staring down his homework.)   What Jeff knows, communicates and experiences is a miracle to me. I love hearing his stories at the end of the day after asking the question, "What did you do at school today?" Some days, he has more to tell me than others and each day I am grateful that the conversation goes back and forth on the car ride home.

One question in particular resulted in surprising detail.  Not too long ago in science class, Jeff was presented with something new in his regular education setting that he described on the ride home from school. The conversation after my usual, "What did you do today?" went a little like this:

Jeff:  "I was in Science today."

Mom: "What did you learn in Science?"

Jeff:  "I learned about the digestive system."

Mom (shocked):  "Really. What is the digestive system, Jeff?"

Jeff:  "Well Mom, it's about what happens to food.  You eat, you chew-chew-chew, then the food goes into your stomach. Then it goes down around, down around, and down around some more. The nutrients get absorbed - then you POOP THE REST OUT!"  He is laughing. I am laughing, then crying. 

Then I realize something -- we have never discussed the digestive system before. When we got home, Jeff told my husband the same story. They ended up shoulder-to-shoulder, looking at other systems in the body, including the nervous system.

Jeff's ability this year to grasp the higher level curriculum in school is wonderful. We go into each year with the goal of moving Jeff forward.  And each year, Jeff demonstrates that he is capable of more.

Jeff still has a complex set of issues to address and we always are working on these items. But this year, he reminds me about moving forward -- he is talking about high school and what he wants to do after high school is done.   Like all our kids, they are full of surprises and as they heal, they learn. And as they learn, they make incredible leaps forward. I am inspired by all our children and the challenges they face with strength and with amazing success stories around each corner. We are lucky to be their witness.

With TACA, this year created many more challenges for our small, hard-working team.  The number of families we serve is approaching 14,000 as we close 2008. Last year at this time, we supported about 6,500 families.  We are adding over 800 new families a month with a team of families answering autism questions and fulfilling needs.

Many families who were struggling before are more than struggling now. The economy and financial issues as it relates to autism are still a monumental challenge. TACA's Family Scholarship program and our partnership with eight other autism organizations via Autism Cares have received a growing number of applications each month, all with great needs.  In addition to these efforts, we just completed adopting 75 families across the US. Thankfully, we had help from Northrop Grumman, National Charity League and over a dozen volunteers and staff members who helped us shop, pack and ship (with the help of Kirkman Labs) to over 400 people - roughly 250 children - a holiday package of cheer, grocery gift cards, and the ability for families to buy a small gift for the kids they love so much.

During this process which pushed TACA to a high stress level, I would stay focused by reading some of their notes.  Their requests were so amazing. Some included:

"My daughter likes rice pasta. It is one of the only foods she can tolerate. Will you please send us rice pasta? That is all we need. Thank you for considering this request."

"We are so grateful to people like you that do things to help families in their time of need.  We just love our kids, and wouldn't trade our lifestyle for anything, even with all the challenges it faces.  Thank you again and again so much from our family, and the kids will be shocked!  We literally have been "warning" them not to expect much if anything this year due to living only on my husband's income, the economy, and medical bills.  Thank you TACA! "

"We wanted to write and thank you from the bottom of our hearts for your overwhelming generosity to our family this Holiday Season! Our kids will be so thrilled with their gifts and I was very, very happy to receive a copy of the TACA Autism Journey guide! We are very grateful for all the hard work and hours you put into helping us and our kids. Your organization is like a shining light of hope in the dark reality of Autism! Thank you, Thank you!"

I am grateful we were able to help these families.   I appreciate the team dedicated to help triple of the amount of adopted families this year versus last, and in plenty of time for the holidays!

Another new program TACA launched this quarter is LIVE CHAT off the TACA website.  Live Chat serves an important need for families affected by autism. Sometimes families aren't able to pick up the phone and call the TACA office or come to a meeting to get the help they need. Through Live Chat, families can "chat live" with an experienced TACA mentor and get the support they need.  This area is in high growth mode and families are reaching out for real help now.  I am grateful that TACA is able to answer that need.  

Later in January 2009, I will be sharing with you a complete list of accomplishments. This abbreviated list is just what TACA has done in the past two months.

Most of all, I want to thank the families that TACA serves. I have learned an incredible amount this year in addressing the unique and growing needs of the families who call TACA. These families continue to show me that they are willing to work hard to find answers for their children. TACA serves as a resource so they can locate those answers and be part of a community -- without feeling so alone on their journey.

TACA will continue to be a resource for families affected by autism -- in a down or up economy.  We are thankful for the donors who have stepped up to help us serve this community of families with over 30 fundraising events and almost 200 educational meetings hosted this year.

In closing, I want to send you all special holiday wishes and New Year’s hug. I know answers are out there for all our children affected by autism.  TACA will continue to help find the answers for families and be here as a resource for 2009 and beyond. God bless you on your journey.

Your friend on the journey,

Lisa A, Jeff & Lauren’s mom, Glen’s wife

And Editor: Kim Palmer (thanks Kim!)