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Mark Blaxill on the Geiers: they do sloppy work

13 Oct

Mark Geier and, more recently, his son David have been active promoting autism as vaccine injury for over 10 years (Mark Geier has been active as an expert in, and been criticized for his lack of quality work, the vaccine court on non-autism issues for about 20 years). They have written multiple papers, ranging from bad to worse, attempting to argue the case that vaccines (and especially thimerosal) are a primary cause of autism.

There are multiple discussions over the years of the Geiers here on Left Brain/Right Brain, Respectful Insolence as well as many other places. The best work was done by Kathleen Seidel at Neurodiversity.com, but due to a server crash much of that content is not readily available. (although it is worth searching for the cached versions or the versions on the Wayback Machine).

The work of the Geiers is so poor that it has always been a wonder to me that no criticism has come from anyone promoting the idea that vaccines caused an epidemic of autism. It isn’t that those promoting the vaccine-epidemic idea are not bright, leaving me wondering if they are too biased by their beliefs or just unwilling to speak publicly against an ally. But, recall, these are the same people who closed ranks around Andrew Wakefield in the face of clear and proved ethical violations.

If we are to believe Jake Crosby, former writer for the Age of Autism blog, it appears that the tacit approval of the Geiers has, at least in part, been a case of “circle the wagons”. I.e. people defending an ally over speak their opinions. Mr. Crosby has blaxillwilliams and quotes more emails where Mark Blaxill (former board member of SafeMinds and a long-time proponent of the idea that mercury in vaccines are a primary cause of autism) expresses his views about the Geiers to Mike Williams (attorney involved representing the families in the Omnibus Autism Proceeding).

In an email image on Mr. Crosby’s blog, Mr. Blaxill is reported to have stated:

In the interest of full disclosure. I thought you might like to see my critique of the Geiers’ latest work on VSD. I have not been a big fan of the Geiers. I worry they do not represent our side well. They do sloppy work.

In another email (quoted by Mr. Crosby, the link to the original is nonfunctioning) quotes Mr. Blaxill as stating:

“As to the Geiers, I may be a bit of a minority voice here, but I worry very much that they can do our cause more harm than good. They are not very good scientists, write bad papers (both writing badly and reporting in sloppy fashion) and attract too much attention to themselves as individuals. In this last regard, they don’t show nearly as well as Andy Wakefield but they’re trying to play the same role. Frankly, if I were on the other side and were asked to critique their work, I could rip it to shreds. I’m surprised they haven’t been hit harder. So I think you are wise to diversify.”

Mr. Crosby’s stance is that this constitutes “interference” in the Omnibus Autism Proceeding. I.e. Mr. Crosby seems to imply that the Geiers are not sloppy scientists whose work is poor, but that the Geiers should have been allowed a more active role in the Omnibus.

In this case I find myself agreeing, in part at least, with Mr. Blaxill. The work by the Geiers is poor. Where I don’t agree is Mr. Blaxill’s decision to hold back on making those statement public. Not just because it’s hard to take the stance that one is a only “…interested in the quest for the truth” when one holds back on key information like an entire critique of the Geiers’ VSD paper. No. It goes deeper than that. The Geiers’ junk science went beyond promotion of the idea that thimerosal is a primary cause of autism. The Geiers ran a clinic for many years. Mark Geier was a licensed physician, David Geier worked in the clinic (and has been accused of practicing medicine without a license). Through their papers and their talks at autism parent conventions like AutismOne, the Geiers became well known. One of the “brand name” autism clinics. They reached this level of respect within their community because no one within that community dared to speak out.

I’ve noted on Left Brain/Right Brain many times before that these parent conventions differ markedly from real science conferences in that no one ever seriously challenges the speakers. They can present almost any theory or idea, especially if they tie it to autism as vaccine injury, without anyone standing up and saying, “that makes zero sense”. These aren’t science presentations, they are advertisements. It would be interesting to see how many of these conventions Mr. Blaxill attended and yet remained silent on the “sloppy” work that could be “ripp[ed] to shreds” that the Geiers presented. Instead, parents were presented a view that the Geiers were good scientists who suffered unjust criticism for their “brave” stance on vaccines.

The Geiers were promoters of chelation as a treatment for autism. Not only does chelation have no scientific basis to be an autism treatment, a study just out this week using rodents states that chelation could be harmful if there is no real heavy metal toxicity:

Finally, we also found that succimer treatment produced lasting adverse neurobehavioral effects when administered to non-lead-exposed rodents, highlighting the potential risks of administering succimer or other metal-chelating agents to children who do not have elevated tissue lead levels. It is of significant concern that this type of therapy has been advocated for treating autism.

It is highly likely that Mr. Blaxill would disagree with the statement that chelation has no good scientific basis as a treatment for autism. He’d be wrong, but that’s been covered over and over before. The Geiers moved on from standard chelation to stranger, more dangerous therapies. As an aside, if chelation was a successful treatment one has to wonder why the Geiers were prompted to move on to using Lupron as an autism treatment. Lupron is very serious medicine and it shuts down sex hormone production in the body. Why Lupron, one might ask? The Geiers convinced themselves (or convinced themselves that they could pass off this explanation) that mercury bound itself to testosterone in the brain, making it hard to chelate. They cited a paper showing that if one heats testosterone and mercury salts in benzene, one could form these mercury/testosterone complexes. They actually claim (yes, they tried to patent this idea to make money off it) that this paper shows that “It is known in the art that mercuric chloride binds arid forms a complex with testosterone in subjects”. The “subjects” are beakers of benzene, not animals and not people. Add to that the lack of an explanation of how shutting down hormone production would break up these complexes. The Geier “science” supporting Lupron would be laughably bad if it wasn’t used to subject disabled children to Lupron injections.

Lupron clearly has no basis as an autism therapy. In fact, the “lupron protocol” played a major part in Mark Geier losing his medical licenses. One has to ask, how did the get such traction for such an obviously bad idea? For one thing, the Geiers were considered respected scientists in the vaccine injury/alternative medicine autism community due to their previous and ongoing work trying to link thimerosal and autism. Work which Mark Blaxill considered “sloppy” and worthy of being ripped to shreds. But instead of sharing his views on the Geier papers with the public, Mr. Blaxill shared them privately within his own circle.

It’s worth noting that the email quoted above was written before the “Lupron Protocol” was developed. We don’t know if Mr. Blaxill was alarmed by the emergence of the “Lupron Protocol”. I can’t find where he spoke out against it. We can see that his blog (under a different writer) promoted the idea as “MERCURY, TESTOSTERONE AND AUTISM – A REALLY BIG IDEA!“. Mr. Blaxill doesn’t seem to have commented there. For all the papers the Geiers have published, Mr. Blaxill only mentions them once in his book “Age of Autism. But as we’ve seen, tacit approval (silence) may not be the same thing as real approval.

Mr. Blaxill had the courage to testify before a congressional hearing last year. A hearing where the politicians had been lobbied in advance to be favorable to his cause. When it came to disagreeing with one of his allies, that courage was lacking. He allowed “sloppy” science from an ally to go unchallenged. An example of the fallout of such a decision, in my opinion had he stood up he could have slowed or even stopped the “Lupron Protocol”, a therapy which in my opinion amounts to the abusive treatment of disabled children in an uncontrolled and unapproved experiment.

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By Matt Carey

Jake Crosby abuses man with psychiatric disorder

21 Mar

Today at Age of Autism Jake Crosby – man who has a psychiatric disorder himself – took it upon himself to disparage a man who also has a psychiatric disorder and encourage the Age of Autism readers to do the same:

Seth Mnookin – a former drug dealer and burglar who bit a police officer…

Geez oh Peet! Offit picks the lousiest spokespeople, doesn’t he? First Amanda “don’t listen to me” Peet and now this former heroin addict.

Starting on Page 191, the DSM IV diagnoses Substance-Related Disorders:

The Substance-Related Disorders include disorders related to the taking of a drug of abuse (including alcohol), to the side effects of a medication, and to toxin exposure. In this manual, the term substance can refer to a drug of abuse, a medication, or a toxin. The substances discussed in this section are grouped into 11 classes: alcohol; amphetamine or similarly acting sympathomimetics; caffeine; cannabis; cocaine; hallucinogens; inhalants; nicotine; opioids; p hencyclidine (PCP) or similarly acting arylcyclohexylamines; and sedatives, hypnotics, or anxiolytics. Although these 11 classes appear in alphabetical order, the follow ing classes share similar features: alcohol shares features with the sedatives, hypnotics, and anxiolytics; and cocaine shares features with amphetamines or similarly acting sympathomimetics. Also included in this section are Polysubstance Dependence and Other or Unknown Substance-Related Disorders (which include most disorders related to medications or toxins).

What Crosby has done is no different than someone coming up to him and abusing him based on his autism. Its shameful and deeply offensive. This is the 21st Century and Crosby has taken it upon himself to ridicule and abuse a man who has the strength of character to overcome his personal demons and carve out a successful career for himself as an exemplary investigative journalist. If Age of Autism need proof of the calibre of his work they should take a look at the reviews The Panic Virus garnered and compare them to the calibre of the 5 reviews Dan Olmsted could round up for Age of Autism – The Book.

Age of Autism has revealed its truly nasty and shallow depths by abusing a man with a psychiatric disorder. Maybe they should think twice before attacking someone based solely or partly on their disorders in order to whip up negativity in their cult members and start to realise the consequences of their actions. I would wish shame on them but they’ve proven time and time again that shame and self-reflection is an alien emotion to them.

In support of David Gorski

22 Jun

To whomever it may concern,

You have probably recently had to deal with a handful of vitriolic comments regarding the online activities of David Gorski. You will probably have been pointed to an online essay by a young man called Jake Crosby in which he makes a series of claims regarding David Gorski and his ‘ties’ to vaccines/vaccine manufacturers and other entities.

I urge you to read these comments and this essay very, very carefully. Once you do I am in no doubt that you will see what the rest of us clearly can – that this work is the work of a highly impassioned young man who believes that he is right. He believes that vaccines cause autism to state it clearly and he believes that by having some kind of – any kind of – tie to a pharma organisation means that David Gorski is ‘tainted’. But what really annoys master Crosby is the fact that David Gorski regularly blogs in support of the science that clearly shows vaccines do not cause autism and blogs against the pseudo science that attempts – and continually fails- to draw any kind of a link between vaccines and autism.

So this, in master Crosby’s eyes, is David Gorski’s crime – supporting the science and decrying the bad science.

In order to cast some kind of suspicion over David Gorski’s support of science, Crosby has ‘discovered’ that Gorski is conducting research into ways to reuse some types of drugs – drugs developed by Sanofi-Aventis who of course also manufacture some vaccines. And that, despite another few hundred words from master Crosby is that. That is the sum total of his ‘investigation’ and the sum total of David Gorski’s crime.

The only real eye-opener on this issue is that Jake Crosby managed to wring out as many words as he did on this total non-issue.

I have known David Gorski online for a number of years. We often quote one another and link to one anothers posts. We regularly email each other and I was disappointed to be unable to meet him for drinks on a visit to the UK he took a few years ago. In my experience of the man he is rigorous, almost fanatical with regards to accuracy and brings these traits to many areas of blogging and online writing including the investigation of bad science.

Why does it matter to me? It matters because I have an autistic child and an autistic step child. When my autistic child was first diagnosed I firmly believed that her autism was caused by vaccines. It was only through being exposed to writings of David Gorski and his peers on the science of autism and the bad science of the autism/vaccine connection that I eventually saw for myself what was obvious: vaccines don’t cause autism and never did.

Scientists such as David Gorski often blog and write online anonymously. They do this because to be exposed to the sort of people Jake Crosby colludes with often means being exposed to harassment and threats. David Gorski is now finding that out for himself. I hope that you as his peers, colleagues and employers will see how vital it is that David Gorski continues blogging and that you will support him in both his work and his blogging.

The American Rally for Personal Rights – bit of a damp squib

27 May

Yesterday was the American Rally for Personal Rights (an anti-vaccine rally) held between 3pm and 5pm in a park in Chicago, US. In attendance was ex-doctor Andrew Wakefield in whose honour the rally was held.

Hoping for thousands, the organisers got what looks like a hundred or so (click for full size).

including one young man (A certain J. Crosby, Age of Autism Editor) who carried the sign ‘Autistics for Wakefield’

I’m not entirely certain who the autistics were. I mean I see Jake but no one else. Also in attendance were Wade Rankin, Erik Nanstiel, Boyd Haley, Bob Krakow and Jim Moody and for ‘name’ anti-vaxxers that was it. No Jenny McCarthy, No Jim Carrey, No Generation Rescue, No Age of Autism bigwigs (aside from young master Crosby of course).

Of course for bloggers such as I, this is a tad disappointing. There’s not really a lot to talk about when nothing much happens, nobody of any consequence shows up and the whole thing resembles a rain-soaked firecracker.

On the bright side, there were The Refusers who I’m pretty sure would’ve been good for a very hearty laugh. Aside from that – nothing really to tell. The sun was out, some anti-vaxxers waved a few signs around and the world collectively yawned.

See ANB’s take on it, he actually attended the rally himself.

Response to Jake at Age of Autism

14 Jan

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

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

Bob Wright snubs autistic adults, the same group who live in poverty

23 Nov

The New York Post reported on Autism Speaks founder Bob Wright having a grumpy slap at adult autistic people who were protesting the fact that Autism Speaks still has no autistic representation on its Board.

Bob Wright had harsh words for protesters who tried to muck up the A-list benefit concert he put on at Carnegie Hall on behalf of autistic kids.

“The protesters are lucky,” said Wright. “They’re well off enough, healthy enough, to do it. I wish my grandson were able to join them.”

Wright runs Autism Speaks, which has raised over $200 million for research into a disorder that afflicts mainly children.

That didn’t stop a clutch of sign-carrying adult protesters from descending on Carnegie Hall Tuesday night, trying to disrupt a concert attended by Donald Trump, Howard Stern and Martha Stewart. Protesters complain that there’s not one autistic person on the board of the org, which produced an “offensive” ad suggesting that autism was a fate worse than death.

Wright, whose grandson cannot talk because of autism, said the disorder is exploding among young kids who can’t speak for themselves.

“This is serious business,” he said.

Note how the reporter states that the benefit was for autistic kids and further states that autism affects mainly children. This should give some insight into the silly one dimensional world that the Wrights, and by extension, Autism Speaks inhabit. Of course autism doesn’t affect mainly children. In fact, it would seem that the reverse is true.

I would like to suggest to Bobo that what is serious business is blindly misrepresenting autism either purposefully or (more likely) out of ignorance. I would also like to suggest that its about time Autism Speaks walked the walk and got aome autistic Board level members. I would further suggest that Bobo wakes up and smells the coffee. Young autistic kids definitely find it difficult to talk for themselves. Most kids of his grandsons age might find it difficult to form coherent opinions on high level concepts like the right to be who you are. In the meantime, having an autistic Board level member would be a step in the right direction. I’d happily accept Jake Crosby or Jon Mitchell. Two men who I vehemntly disagree with yet who’s opinion on autism I respect due to their diagnosis.

Maybe Bobo might take a look across the pond if his cheeks aren’t still smarting from the slapdown he got last time he came over here. Maybe the reality of life for autistic adults over here might cause him to get a bit of a reality check as to where his research priorities should lie. As he continues to steer Autism Speaks down the increasingly stupid looking anti-vaxx hypotheses,

A THIRD of Wales’ autism sufferers are unemployed and living in ‘poverty’ without benefits, a charity has said.

9,000 autistic adults are surviving (sort of) on handouts from friends and family. Not only are they subject to ignorance in job centres, they are not made aware of _how_ to make a claim:

She [Shirley Parsley] said: “It is scandalous, therefore, that thousands of people with this serious, lifelong and disabling condition are being consigned to poverty by a complex and counter-productive benefits system.”

This is the reality of life for autistic adults. Abandoned by a state system and also abandoned by Autism Speaks, an organisation focussed solely it seems on people of Bob Wright’s grandchilds age. Whilst Bobo complains about how autism is ‘exploding amongst kids who can’t talk for themselves’ (a factoid for which there’s no valid science), the adults he and his organisation turn their backs on are literally starving.

Asperger Syndrome is not a disability, just ask Lenny Schafer

6 Aug

Lenny Schafer wrote one of the most insulting comments I have seen on the Age of Autism blog in a long time. This is actually old news–the comment was made on Luly 13th. I missed the comment, but how did I miss that it was, no kidding, picked as an award winning “comment of the week” by the “editors” of the Age of Autism blog.

If you didn’t see it, here is Mr. Shafers, award winning comment from the Age of Autism blog:

“Disability” is not a literary term open to subjective interpretation. It is a forensic, legal term defined in documents like the DSM-IV for the parsing of government entitlements and insurance compensations. Asperger Syndrome is not defined as a disability. Those with Aspergers do not get Social Security Disability benefits. They are not entitled to most state entitlement disability programs and are not qualified to park in disabled parking zones. Those with Aspergers ARE disadvantaged and deserve support and our advocacy for them, but not at the same levels for the disabled. Let us stop interchanging the term “disability” with “disadvantage”.

Also, the term “high functioning autism” is a street jargon misnomer and has no clinical definition, despite it widening use. It is a term that also trivializes autism. It is oxymoronic. Autism is defined by disability, lack of function. Is there such a thing as high-sighted blindness? Or high-hearing deafness? Perhaps “HighER Function Autism” might make more sense because it is not self-contradictory. (We then wouldn’t need the redundant “Low Functioning Autism” label either.)

The whole autism spectrum labeling is a mistake, in any event, for a number of reasons I won’t go into here. However, we are stuck with it. Let’s get clear on related word meanings. Lack of good communication skills is a definite disadvantage, but not necessarily a disability.

And let us hope that the upcoming DSM-V gets clearer about defining autism only as a disability — and kicks the high functioning ND autism squatters onto the personality disorder spectrum where they belong.

There is so much that can be said, point by point, in response to Mr. Schafer’s comment. But my guess is that most readers of this blog need no commentary to realize what a grossly insulting statement Mr. Schafer made.

What boggles the mind even further is that this was a comment to Mr. Jake Crosby’s piece, “Autism, Asperger’s: Who is Truly Disabled?“, a piece all about how Asperger syndrome truly is a disability. Mr. Crosby’s concluding statement in that piece was:

Unfortunately, that is what’s happening, but as a person with Asperger’s I can tell you that I am truly disabled, albeit much more mildly than others with autism.

While we have disagreed on some points, Mr. Crosby and I have been having a good discussion in the comments of this blog. I believe we both agree that Asperger Syndrome is a genuine disability. I couldn’t see him agreeing with Mr. Shafer’s comments, so I went digging to see what comments Mr. Crosby made.

Here are two comments by Mr. Crosby in response as posted to AoA:

I’m a contributing editor to this site, but played no role in Lenny Schafer winning the “comment of the week.” His comment isn’t just grossly offensive to parents of those on the higher end of the spectrum, but also to those of us ON the higher end of the spectrum.

and

Schafer’s post is wrong on so many levels. It is the comment of the week alright, the worst comment of the week.

I almost didn’t post Mr. Crosby’s comments. I didn’t want to go for the easy, “look there’s dissension in the ranks at AoA” message. As I said above, Mr. Crosby and I don’t see eye-to-eye on all subjects. But I can still recognize and respect the courage it took to speak out like that. Mostly, it is worth noting that Mr. Crosby doesn’t share Mr. Shafer’s opinion.

The Age of Autism has officially closed comments to Mr. Crosby’s piece and to the “commenter of the week” post.

I’d love to see the comments they deleted.

Jake Crosby’s great big straw man

10 Jun

I’ve said it before—a blogger could spend his entire online time debunking blog posts from the Age of Autism. Between the pseudoscience and the bad policy promoted on that site, it is draining to just read it on a regular basis, much less respond. A few weeks ago a particularly bad post came through and I wanted to respond but, frankly, I just didn’t have time. The post was by Jake Crosby about a (then) upcoming article in Newsweek about Ari Ne’eman.

It is no secret to people who read this blog that I admire Mr. Ne’eman. A rough analogy is that Ari Ne’eman is to autism advocacy what David Mandell is (in my mind) to autism science: a person who is asking the right questions and staying above the vaccine debates. Mr. Ne’eman founded the Autistic Self Advocacy Network (ASAN).

It really is worth taking a few minutes to read the Newsweek article. I read it online, read Kev’s blog post, and then stumbled upon it in my doctor’s office last Friday.

Erasing Autism

Scientists are closing in on the genes linked to autism. So why is Ari Ne’eman so worried?

Since I am discussing Mr. Crosby’s blog post, you should read that as well. The history leading to that post is somewhat sad. A reliable source I know says that prior to the publication of the Newsweek article, Stephen Shore leaked the information. This led to a blog post by John Best, including death threats. Jake Crosby at the Age of Autism decided to blog his own misconceptions about it. Here’s one bit of advice for Mr. Crosby: when you are pickup up stories from John Best, fired Generation Rescue “Rescue Angel”, you are putting yourself in really bad company**. I am sure Mr. Shore did not intend to precipitate a blog post by John Best. At the same time, I hope Mr. Shore is somewhat chagrined to realize that this happened.

Mr. Crosby’s blog piece had a fairly simple theme: “don’t publish the Ari Ne’eman article; interview me instead”. Or, failing that, “Give me equal time”. We all knew (and I assume Mr. Crosby is intelligent enough to know as well) that his was an empty commentary: the article was already in press. There was no way to either pull it or to add Mr. Crosby’s comments*. But, it makes good blog fodder and may get Mr. Crosby’s foot in the door for future articles by Newsweek. Somehow I doubt Newsweek is impressed by strawman arguments, but, who knows, Mr. Crosby might appear on their radar now.

Let’s do what Mr. Crosby didn’t do. Let’s really look at what is being said and done by Mr. Crosby, Mr. Ne’eman, ASAN, Newsweek…you know, let’s discuss some facts.

Mr. Crosby has taken on one of the Age of Autism’s favorite tactics: the “straw man argument”. He pretends that Ari Ne’eman promotes the idea that autism is not a disability. There is a common tactic amongst those who dislike Neurodiversity: try to define it to be something it isn’t. I understand the motivation: it is really hard to go out in public as an autistic or the parent of an autistic and say “I am against a movement that thinks autistics deserve civil rights”. But, they people try this argument all the time. Case in point, Mr. Crosby’s blog post:

Neurodiversity is an ideology supported primarily by some autistic individuals and parents who do not believe that autism is a disability, and opposes any potential cure.

The statement was clearly false when Mr. Crosby wrote it. Mr. Ne’eman clearly considers autism to be a disability. I hope that Mr. Crosby was duly embarrassed when the Newsweek article was published, including a simple statement outlining Mr. Ne’eman’s position on the autism spectrum:

It’s a disability, yes, but it’s also a different way of being, and “neurodiversity” should be accepted by society. Autistic people (he prefers this wording to “people with autism,” a term many parents use, because he considers the condition intrinsic to a person’s makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to.

See what I mean? I find it amazing that a person with an ASD like Mr. Crosby could be against accommodations, independent living, and acceptance as people. So, rather than address this issue head on, he builds his straw man.

The real argument, we all know, is about the “cure” question. Mr. Ne’eman believes that Autistics should be allowed to say, “I don’t want a cure” and “please respect me as for who I am: autistic.” For those using pity politics to promote a cure agenda, people like Mr. Ne’eman are very tough obstacle to overcome. Case in point, a quote from the Newsweek article:

“There’s a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place,” he says. “That’s not true.”

Mr. Crosby has cast his lot with the pity-politics groups represented at the Age of Autism blog. That’s fine, it is his right. He is even within his rights to misrepresent other people and organizations in order to further his own ideology. I don’t think it is a good idea, or that it makes sense, but it is his right.

Mr. Crosby makes a number of completely unsupported assertions.

Yet, it appears there has been a mainstream media blackout on those of us within the community who publicly disagree with that point of view.

When I first read “Media blackout” all I could think was: do a Google news search for Jenny McCarthy and for Ari Ne’eman and get back to me on that one, would you Mr. Crosby? But, Mr. Crosby is lamenting the fact that autistic voices that dissent with Mr. Ne’eman are not heard. Well, perhaps that would change if, say, Generation Rescue or any of the other organizations who sponsor Mr. Crosby’s blog writing would put autistic people in prominent positions? Isn’t it ironic that this is exactly the sort of thing ASAN is promoting? Nothing about us without us. If Generation Rescue would listen to ASAN, perhaps Jake Crosby would have his platform. Instead, he supports groups that have no autistic representation.

Mr. Crosby uses another common Age of Autism tactic: use every chance possible to promote the “epidemic”. He argues against the “epidemic denialists” who don’t agree with the mercury-autism hypothesis. One thing I admire about Mr. Ne’eman is that he doesn’t spend much (if any) time on the “epidemic” and, instead, fights for the rights of people with disabilities.

Jake Crosby has to dig deep in order to find reasons to criticize Ari Ne’eman. Case in point, from a second blog piece by Mr. Crosby:

Then the Ari Ne’eman piece ran online a week later and then in the May 25th issue, where he professed his anti-cure views while expressing an unfounded fear of the unproven idea that autism can be prevented through eugenics.

Mr. Crosby plainly gets it wrong. The argument isn’t that autism can be prevented through eugenics. The argument is that with a good genetic test, one might in the future prevent autism through eugenics.

If one can find anything amusing about eugenics discussions, it might be this: Jake Crosby disagrees with JB Handley…and JB Handley agrees with Ari Ne’eman. You see, JB Handley has also raised the worry about genetic testing leading to a form of eugenics in a piece Autism Speaks: The Abortion Industry’s Best Friend.

Mr. Crosby closed his first blog post with this lament:

Unfortunately, I have not been as active as I would have liked since I am in college and just declared my major in history

Let me just point a few things out to Mr. Crosby: While an undergraduate, Ari Ne’eman has founded ASAN, worked in numerous states on bullying issues, special education reform, assisted living supports, issues for adults with autism and he was instrumental in getting the “Ransom Notes” ad campaign pulled. Mr. Ne’eman works with other disability groups to give advice to the federal government at high levels.

I don’t think he got where he is by making obvious staw man arguments about people he disagrees with.

Perhaps that is why Newsweek wants to talk to Ari Ne’eman and people like Mr. Crosby and myself are just blogging.

*Mr. Crosby has noted that he did not know that it would be difficult or impossible to pull or change an existing story. He also did not know beyond a vague “couple of weeks” how soon the article would be published.

**Mr Crosby states that his information did not come through John Best. I take him at his word and appreciate the fact that he doesn’t want to be associated with Mr. Best.

Ari Ne’eman on autism

16 May

Ari has had a quite wonderful piece on him in Newsweek. It takes on the hard questions for Ari and he answers them with the aplomb that has come from years of hard work of learning to be an excellent networker:

Ne’eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. “People who see Ari today have no idea where he’s been,” she says. As a young child, Ne’eman was verbally precocious but socially challenged. “I didn’t understand the people around me, and they didn’t understand me,” he says. He was bullied and ostracized—back then he didn’t look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as leisure reading. “I think the word ‘freak’ may have come up,” he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne’eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he’s learned to play along. Still, none of it is easy. “You come out of a meeting and you’ve put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases,” he says. “Even if you learn to do it in a very seamless sort of way, you’re still putting on an act. It’s a very ex-hausting act.”

This is a common attack tactic from people like Jake Crosy at AoA or Harold Doherty. They demean the efforts that autistic people such as Ari have needed and still need to put into their lives to advocate for their own beliefs in favour of the promotion of their own limited and limiting set of autism related beliefs. But as history has shown, its people like Ari – those who are willing to be openly challenged about what they think who will win the respect of people.

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. Thank you.

Neurodiversity in action

6 Sep

On….(wait for it)…..the Age of Autism blog.

Have you recovered yet?

A new guest piece has been posted on AoA from a student who has Asperger’s Syndrome named Jake Crosby.

Its a very well written piece and Mr Crosby expresses his viewpoints very well. However, I don’t agree with many of them at all although I respect his right as a self-advocate to say them. He begins thusly:

These are the ways I have been impacted by my AS; I can’t think of anything positive it has done other than my sense of accomplishment after overcoming some of its challenges.

Well, you are in good company! I have heard many of the autistic bloggers on the Hub say exactly the same thing. Of course, some go further and say that their right to be who they are and live as they are within a sometimes less than tolerant society is also gratifying. I wonder if Mr Crosby feels the same.

However, a small, new camp is emerging from within the Autistic community of Aspies who believe AS and even Autism in general is a great thing.

Hmmm, I’m not sure I’ve ever seen anyone say autism is a ‘great thing’ with no form of context. I’ve seen it simply referred to as part of who someone is and that it (as an entity) has no properties. In other words, its neither great, nor terrible, it simply is what it is.

I’d also like to educate Mr Crosby about this ‘small new camp’ he refers to. It is neither small, nor new and nor indeed does it refer solely to Aspergers – or even autism. Its first use dates back to 1997 – a year before the emergence of the autism/vaccine hypotheses. It now encompasses tens of thousands of people worldwide and has widened to include people of varying neurological differences such as OCD, Tourettes, Dyspraxia, Dyscalcula, Manic Depression (chest bump) and a multitude of others. See ‘Mad Pride’ for example. I don’t believe any of us are saying that we do not live with a disability. What I gather from conversations with others like me is that the word ‘disabililty’ does not define or limit our existence. That there is good as well as bad and that nothing in life is as black and white as Mr Crosby sadly wants to see it.

Mr Crosby makes a variety of intelligent challenges:

This politically correct group of people says that Autism is not a disorder, but a “way of life.” They deny that any environmental factors such as mercury and vaccines could have caused Autism and they claim they were meant to be Autistic. Most of all, they rail against any potential for a “cure,” and see wiping out Autism as synonymous with wiping out the people themselves. While there are many mildly Autistic people like me who are busy trying to overcome our challenges as much as we can and severely Autistic people who are struggling to even speak a word, this crowd is getting more and more vocal about their staunchly pro-Autism views.

Again, Mr Crosby is attempting to paint life as black and white. Autism _is_ a disorder. It is also a way of life. I also know of at least one neurodiversity advocate who staunchly believes vaccines cause autism, although my personal opinion based on all available evidence is that it does not.

I personally don’t rail against a cure. I have no opinion on one since one does not exist. I know Alex Plank who runs Wrong Planet – a very large online Asperger’s community – feels the same. In 2006, the actor Stephen Fry made a documentary about manic depression. I’m sure if one visited any number of Torrent sites one would find it. At the end of it, he asked all his interview subjects a question: if you could press a button that would remove your manic depression, would you. the vast majority said ‘no’.

Sadly, Mr Crosby’s piece then degenerates into the core anti-vaccinationism we all know exists on Age of Autism:

Despite this, these people are determined to see AS as a positive advance in nature, not a negative impact from toxicity or any other cause. When confronted with the emerging information that the 6000% increase in Autism is related to poisons in vaccines that are overused, they instantly say there’s “no evidence,” citing the pharmaceutical/CDC party line. Similarly, they ignore mountains of independent studies that show the link to Autism just as the CDC has. While the “neurodiversity” advocates and the pharma-goons clearly have separate agendas, they act similarly.

With all due respect to Mr Crosby, these views and statistics are ridiculous and not based in any kind of reality or science. There are in fact, no reputable studies that link vaccines to autism. Unfortunately, a goodly remainder of his piece carries on in this vein. he then reiterates his main theme:

If only they would stop pretending Autism is in any way beneficial, and realize that their true strengths are who they really are, and that their disability is not. I can’t speak for all, but as someone with Autism I can say these people with my same condition who claim to speak for me do not. I do not believe these people speak for the majority of people with AS. No one else I have known with Autism has actually said they liked having it and I have yet to actually meet these people who do.

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. What matters is that all people with all forms of disability have a right to express their opinions and share their experiences as those who live the daily reality of living with those conditions.

It is great to hear autistic self advocates like Mr Crosby speak out – particularly on a site like Age of Autism where the views of autistic self advocates have never been welcomed before – and aside from the rather embarrassing and unnecessary sections of his post regarding vaccines, he makes some good and interesting points.

However, I feel that he has, like many before him and no doubt many after, misunderstood what neurodiversity is. I’d gladly have a conversation with him regarding neurodiversity and what it actually is, who it affects and what I think it means to me and my family.