Managing Editor's Note: Last week's post about a ubiquitous commenter in the vaccine safety denialist community by JB Handley caused quite a storm in the blogosphere, especially at a blog called LBRB. We thought we'd re-run one of Jake Crosby's posts about the leader of the LBRB community.
By Jake Crosby, January 2010
He is the founder of the Autism Hub, a collective of neurodiversity blogs, which brags that they are, “the very best in autism blogging.” He is also owner of Leftbrain/Rightbrain, the most highly-trafficked of the blogs. A web designer by trade, manic-depressive self-advocate, and an autism parent, Kevin Leitch, “Kev” for short, is one of the internet stars of neurodiversity, and a dedicated one at that, despite formerly expressing belief that vaccines cause autism.
A British native, his website has a UK domain name, but an estimated 70% of visitors to his site are from the US. Though he has since sold off his ownership of the Autism Hub to Dave and Kathleen Seidel, they do not hesitate to give credit where credit is due, saying “Sincerest appreciation to Kev Leitch for original creation of The Autism-Hub.” Since neurodiversity mainly operates online, it is not far-fetched to say that he is the most important figure in the movement, given that he essentially created the neurodiverse blogosphere. His blog leftbrain/rightbrain, which he still owns, vigorously challenges Age of Autism and associated “cure groups” on a regular basis, with headlines such as “Is Generation Rescue trying to get Airborne to fund junk science?,” and “Age of Autism abandons Pretense,” the latter written by Kev himself. He even called us “less evolved creatures.”
Kev also critiqued my very first contribution to Age of Autism, “Living with Aspergers,” concluding “Mr Crosby seems to be missing the point of self-advocacy. To some autistic self-advocates, their autism is beneficial. To Mr Crosby, it seems it is not. It is largely a matter of perception and choice in my opinion. I have no idea who (if anyone) speaks for the majority of people with Asperger’s and I’m not sure it really matters that much.”
Eight months later, however, it appears he does have an idea of who speaks for those on the spectrum. The day Newsweek Magazine published an article for Ari Ne’eman, Kev wrote, “Well done Ari, I’m proud to think that you are representing all manner of people on the spectrum, from the very high functioning Jake Crosby to the very low functioning such as my daughter.” However, as previously stated, Kevin Leitch’s blog was not always about neurodiversity activism, and he even openly expressed his belief that vaccines can cause autism. Over six years ago in the very first entry, he wrote, “The purpose of this blog is to document my daughter [X] progress. She has recently been diagnosed as Autistic at age 3.” He continued, “[X] was born on 17-02-00 weighing slightly more than usual. The first few months of her life were totally normal- we didn’t feel concerned about her health or well-being at all…” But then, “That changed however when she had her DTP jab.”
I don’t think that this requires further explaining, since most visitors to Age of Autism are all-too familiar with this kind of story. To anyone involved in vaccine-related controversies for a long time, the DTP shot (what the Brits call a “jab”) has a long and controversial history, not just for causing autism but a wide range of disorders such as epilepsy and learning disabilities. It was the subject of a 1991-published book by medical historian Harris Coulter and NVIC founder and AoA contributor Barbara Loe Fisher, entitled “DTP: A Shot in the Dark.” The book even touches on the connection between the shot and autism spectrum disorders. Lawsuits of the 80s for damages caused by the shot led to the National Vaccine Injuries Act of 1986, which prevented manufacturers from going out of business by shielding them from lawsuits. It also created the top-secret Vaccine Safety Datalink. As early as 1967, for that matter, the Autism Research Institute asked parents if their children had adverse reactions to the shot. So the news of the DTP shot being associated with adverse events including autism is certainly nothing new.
Before launching his character assassination crusade against Dr. Andrew Wakefield at the behest of his editor whose father sat on a sub-committee approving the MMR vaccine in Britain, journalist Brian Deer defended the DTP shot. In a 1998 article published in The Sunday Times, “The Vanishing Victims,” he alleges that children damaged by the shot and compensated for personal injury were not actually damaged by the vaccine and that the judges had been tricked by a conspiracy of parents, lawyers, and doctors. In other words, Brian Deer concocted what is practically the same story about the DTP shot as the one he is currently fabricating about the MMR vaccine.
More recently, a 2006 study led by Neurology Professor Samuel Berkovic, who previously won a research award from DTP manufacturer GlaxoSmithKline, claimed to have found a genetic base for one of the conditions associated with the vaccine, which was published in the The Lancet Neurology. The disease in question was Severe Myoclonic Epilepsy of Infancy (SMEI), and the associated genetic defect was mutations in the SCN1A gene. Defenders of the vaccine argued this vindicated the drug. However, Berkovic et al. admitted, “In the presence of SCN1A mutations, vaccination can still be argued to be a trigger for the encephalopathy, perhaps via fever or an immune mechanism.” In fact, the study offered more evidence of a genetic predisposition. A paper referring to Berkovic et al. by Erick Sell and Berge A Minassian of the pediatric neurology division of the Hospital for Sick Children in Toronto, Canada, published only one month later in The Lancet Neurology, concluded “Is the SCN1A mutation a predisposing factor waiting to be triggered by fever or other stress? Probably so. In fact, as early as 2000, Nieto-Barrera and colleagues12 noted that more than 50% of patients with SMEI had their first seizure after DPT vaccination.” Worth noting is that likewise, any genetic association found in autism, if one is ever found, cannot be proof that the disorder is purely genetic rather than a predisposition to environmental insults, much less a pseudo-association found in 65% of cases and 61% of controls.
But back to Kevin Leitch’s jab in the dark. The DTP is every bit as relevant to the current controversy surrounding autism as it was to SMEI. After all, the vaccine in Britain contained 25 micrograms of mercury at least until the end of 2004, well after the incident described by Kev in his first entry to Leftbrain/Rightbrain. Mercury-containing versions are still being exported all over the third world. So why Kevin Leitch’s about face? Well, he describes it on his own site, under the “canards” category, regarding the vaccine-autism connection, “I was forced to abandon that belief when I read the science involved. That’s when I became aware of the importance of thinking critically.”
His last post about mercury in vaccines and autism in 2004 was made on August 11. The UK government just scrapped the routinely recommended DTP vaccine containing thimerosal around the same time Dr. Mady Hornig’s study came out showing autistic behaviors developed in mice injected with thimerosal. In this post, Kevin Leitch states his position rather clearly, “We believe that the 3 in 1 jab [X] had triggered her autism and we also believe that there was mercury used as a suspension fluid in her DTP jab.”
He stopped blogging about mercury causing autism for a while after that. Then, on March 11, 2005, he writes about it again, only from a completely different perspective. He opens by saying, “Another day and another ‘cure’ group springs up. This one is called Generation Rescue and centres its efforts around the removal of Mercury.” He seems to have since believed that autism should not be cured. He goes on, “They claim that its the Mercury in our everyday lives that has caused autism and that its removal from the body will cure autism,” but then tells us he knows better, “However, they are wrong. If they were right then there would be no genetic evidence that autism exists.”
Given that the latest and best “evidence” for autism genes trumped up as one of the great discoveries of the year by TIME Magazine showed a never-before replicated mutation in 65% of cases and 61% of controls, it appears that statement of his is evidence-free. Also ridiculous about his comment was that, as previously described about SMEI, even if a genetic association were found, it would more likely suggest a genetic predisposition for the disorder, not a purely causal link. He descends further into his logical fallacy, “Some autistic people have comorbid conditions such as ADHD, Tourettes etc. If an autistic person is proven to be suffering from Mercury poisoning and subsequently treated, they have been successfully treated and cured of their poisoning – not their autism.”
What on earth caused the change from, “we believe that the 3 in 1 jab [X] had triggered her autism,” to this? Did “the science” really force him to abandon the former? Did he really start thinking critically? Certainly there was no science to back up those assertions of his about mercury poisoning having nothing to do with the etiology of autism. Such thinking is far from critical. Questions addressed to Kevin Leitch about what caused his change of opinion were sent to Leftbrain/Rightbrain. To date, there has been no response.
And yet, he seemed to have reported success from treatment based on the very same premise that Generation Rescue uses to advocate chelation, the detoxification of heavy metals, namely mercury. In a May 10, 2004 entry entitled “Homeopathy,” he writes, “the Homeopathic regime [X] is on has cleared her body of a lot of the toxins introduced by the immunisations she had and -best of all - has helped her settle back down into a much more stable sleeping pattern.” Even more incredible is that this can be viewed on Generation Rescue’s website, after Kevin Leitch sent in a personal testimonial, saying grimly, “Our daughter [X] was diagnosed with low functioning autism at age three. We blamed the DTP vaccine which she had a bad reaction to. She would have very long lasting meltdowns, she would smear faeces, she would exhibit self injurious behaviour, she did not talk at all, she avoided eye contact and her only activity was that involving toys that spun. She walked on her tip toes and the doctor said she had a low IQ (below 70). We were told by mainstream medicine that she was 'unreachable'.”
But then, his story quickly changes, “Today [X] is six and after following biomedical interventions (and some other things) [X] will talk - on Christmas morning this year I went to wake her up and she said 'good morning' to me. She no longer smears feces and is 99% toilet trained, she can write notes to people and knows all the letters of the alphabet and can count up to 40 unprompted. She can use a computer mouse unaided and has numerous favourite websites. The self injurious behaviour is vastly lessened, as are the meltdowns. Her eye contact is now perfect and overall her sensory issues seem 99% under control. She can drink out of a normal cup and use a knife, fork and spoon to eat whilst sitting at the table. In so many ways, this is a different child.” (HERE)
Kevin Leitch later revealed that his submission to Generation Rescue was originally under a false name “Clarence House,” after a royal home in London. However, he appears to stand by his belief that these therapies have worked. On his blog, he writes, “All of it is true except the name. The biomedical treatments I was talking about were multi vitamins, fish oil and a steroid inhaler for her asthma. The ‘other things’ were love, acceptance, patience and education.”
But what about the homeopathy that supposedly removed all those toxins, presumably mercury? Under the Homeopathy entry of Kevin Leitch’s blog, a commenter named Sandy asked that very same question on September 21, 2005, “I was wondering…a year and a half later are you still feeling the same way about homeopathy as you do above?” Kev replied, “They’re a true reflection of my thoughts at that time – I made a recent post on this very subject not too long ago.” Unfortunately, the “recent post” he linked to at the time is no longer accessible. To date, Leftbrain/Rightbrain has not responded to questioning about the contents of the unavailable post. He continues, “I feel mostly like these were things we did for us rather than for [X] and that realising that fact was one of the biggest impetus’ for change we had as a family.” Interestingly, he did not deny that the therapies worked or were effective, merely indicating that his philosophy about using them changed. Given his grim “before” story, “She would have very long lasting meltdowns, she would smear faeces, she would exhibit self injurious behaviour, she did not talk at all” etc., it very much seems like the treatments he did were “for [X].”
Kevin Leitch’s new viewpoint is more like a change in philosophy than “reading the science involved.” His attack on Generation Rescue is apparently part of a greater discontent with curing autism, in spite of his hypocritical testimony of success from the kind of treatment the charity advocates. Earlier in the month of March 2005, he also gave his opinion of Cure Autism Now. “This, to me,” he said, “verges on eugenics.” The month prior was when he made perhaps his first post ever against someone wishing to cure autism, Lenny Schafer, whose comments to multiple news and media outlets have overwhelmingly been that neurodiversity should simply be ignored.
But what is perplexing about Kevin Leitch is the way in which he made his about-face. What could possibly have made him transform his blog from that of an ordinary autism parent to radical ND? The change, apparently, was expressed in a very long post on January 11, 2005, perhaps the longest Kev had ever written since the founding of his blog, about an article that ran in the Daily Telegraph two days before. The headline of his entry says it all, “Cure for Autism?” The article to which he refers gave publicity to proponents of neurodiversity during the pre-ASAN/Ari Ne’eman days of people who informally referred to themselves as the “Autism Liberation Front,” and their websites, such as autistics.org and neurodiversity.com.
In this entry, Kevin Leitch shows a new perspective, stating that: “Autism is such a fundamental part of autistic people that any other choice is tantamount to eugenics after the fact.” This was presumably the “science” that caused him to change his views - his exposure to the neurodiversity movement. The quote that particularly enticed him was the Autism Liberation Front’s motto, “I am not a puzzle, I am a person…..Here we’re silenced. Parents don’t speak for me.” Ironically, neurodiversity.com is run by a parent, Kathleen Seidel, not a person with autism. The co-webmaster of autistics.org, Amanda Baggs, is equally dubious, presenting herself as having low-functioning autism when her own former classmates have contended that she was perfectly normal in school. The homepage of autistics.org displays a computer-generated picture of dead people - in a trashcan. On the side of the trash reads “C.A.N.,” the acronym of Cure Autism Now.
So why was Kevin Leitch so easily taken in by Neurodiversity? What pre-condition made Leftbrain/Rightbrain shift so quickly from being just another blog about a parent’s struggle with autism to one that takes a hard-line pro-autism stance?
Let’s go back to the very first entry on his blog again, where he said, “The first few months of her life were totally normal- we didn’t feel concerned about her health or well-being at all. That changed however when she had her DTP jab.” The following paragraph, he continues (boldface mine), “I know there’s been a lot about the jabs (particularly the combined MMR jab) in the news but we (or rather I, [Mother] was a lot more dubious than me but I managed to convince her
) decided to go ahead with it and on the night of her first lot of jabs [X]began projectile vomiting and developed a temperature that peaked at 102 degrees.” Apparently, Kevin Leitch was behind this fateful decision. The unfortunate story continued, saying “We phoned for an Ambulance and took her to A and E where they brought her temperature down, then told us they couldn’t find much wrong with her. We were relieved but by the end of that week we knew something was wrong with [X].” Telling us what that something was, he says that eventually, “we were formally told that [X] was Autistic.”
Let me send out a message to AoA’s dear old friend, Kev, in case he is reading. If you cannot bear an autism-vaccine connection out of guilt caused by a decision you made nine years ago, just imagine what you will be feeling in the future for all those parents who were convinced after reading your blog that vaccines like those preserved in mercury were safe, and your mistake was repeated.
Addendum: Kevin Leitch claims my mentions of trying to contact Leftbrain/Rightbrain are erroneous. This is not true, I could not find his email address on the site's contact page, which is not working, and did not want to post questions publicly on the site's "feedback" forum for the whole world to see when they were addressed solely to Kevin Leitch. I did, however, contact the following address at Leftbrain/Rightbrain:
email@example.com. I have had previous requests fulfilled by sending to the above email before, particularly in one instance where I submitted a comment to be uploaded to a given page because it wouldn't be uploaded when I tried submitting it in the comments section of Leftbrain/Rightbrain. So this was the email I contacted as a last resort to engage Kevin Leitch in private discussion, thinking it would work based on my previous experience. However, Mr. Leitch now claims that he was not contacted by me, thus indicating that the emails sent to the above account did not make their way to him, which is perfectly fine. However, he is wrong to assume that I did not try contacting him through Leftbrain/Rightbrain simply because he did not receive my email.
Jake Crosby is a history student with Asperger Syndrome at Brandeis University and a contributing editor to Age of Autism.