Archive | 2007

Downtime

4 Jun

To say I’m disappointed and angry is an understatement. I’m going offline from all things autism for a few days. I still have no idea about what neurodiversity is to me anymore or my role in it.

To the untold amount of people who’ve dropped me mail regarding this issue, I sincerely thank you. Its good to know I have your support, especially the autistic mailers amongst you. It does mean a lot.

There’s a lot going on ‘behind the scenes’ right now as well that is saddening to me and some of that is neurobigotry and ableism towards people such as myself. This has hurt me a great deal and I need to get away from that too.

So, my email acct is suspended temporarily and I’m going to just vanish for awhile (few days, week, not sure). When I come back I’ll hopefully have a better idea about how (if at all) I want to participate in neurodiversity and a better idea of what I want to do (if anything) with the Hub.

Nothing is decided here

3 Jun

I’ve done a lot of thinking over the last couple of days. I’m trying to get my head around the events and make some kind of sense out of them before I make any decisions on my own future association with neurodiversity and in particular the Hub.

I’ve read and re-read a lot of the threads and comments that preceded and also followed mine and I have come to a few conclusions that have not made me happy in any way but I intend to speak my mind.

The first conclusion that I have come to is that Larry is a pseudo intellectual poseur. I’ve looked carefully at what he has written both now and in the past and applied his own criteria to his words and actions. I find him duplicitous – dishonest and narcissistic.

This does matter. Larry makes some strong allegations. It is these allegations and his subsequent behaviour that led me to my conclusions about him.

A prime example of Larry’s purposeful misinterpretation lies in this comment in which Larry berates me thusly:

…the battle is not being fought or won on the scientific front it is a political battle, and economic one, about education, welfare, employment rights, housing, you name it. Scientists are a small cog in a much larger machine and the media is where the battlefield lies. NT’s are not the heroes in this battle either.

I was very puzzled by these words as the post Larry was referencing made no claim that the science of autism was ‘the battle’. I also found his comment that ‘NT’s are not the heroes in this battle either’ bizarre as I don’t think I’d even brought neurology into the post. Larry had built himself a couple of strawmen which he could make himself look clever with by taking down. This was just needless narcissism.

Next, Larry made a post on his own blog in which he states:

…I am becoming critical of a lot of posting in the autism hub itself, because I believe in the reasoning behind the slogan “nothing about us without us”

I have to say it, but the problem is that important though it is to disabuse the public of the notions that mercury poisoning = autism (which nobody much believes in the UK as we are still too busy blaming MMR) , important though that is, that is not where the main fight is, and that is to realise that autism is for life, and because most of us spend more of our lives as adults than children, that there we must have proper recognition and a place in society.

Furthermore, that although there are ‘good parents’ who agree with that and want it as an aim for there as yet young children, the message has to come primarily from us not them. If the parents continue to evoke that old line “but you can speak for yourself my child cannot” they run the risk of effectively taking our voice away, because we are the ones with the condition?

I tried to engage Larry on his blog about why I believed he was right and wrong (something I still believe). He is right that there should be ‘nothing about them without them’. He then infers that there is a problem associated with this statement originating from some parent blogs in the Hub. He then goes on to expand on his comment on my blog about how vaccines/mercury/science is not the main fight. He closes by saying that ‘the message’ should come from ‘us’ not ‘them’ (parents).

All of this was couched in Larry’s usual pontificating prose style. At no point did Larry ever mention any specific examples of these parent blogs he was so concerned about. He makes no explanation or examples of blogs in the Hub that abuse the notion of ‘nothing about us without us’.

I was concerned about this enough to want to write my own blog entry about it and try and get as many views as possible, particularly from autistic people.

During the course of the comments I read some of the statements Larry had made on Steve’s blog – a harmless enough post Steve had made promoting a few of the things going on. This was Larry’s first comment:

I happen to believe in the promotion of the case of autism from an autistic viewpoint contra mundum and in spite of everybody. This is Cosa Nostra, our thing, autism advocacy will only ever be advanced by ourselves speaking for ourselves and so I don’t go a bundle on NT’s even if they are on our side, being promoted to hero status.

Again, Larry seems to be building strawmen for himself to knock down. No where in Steve’s post did he advance an opinion that promoting the case of autism should _not_ be made primarily by autistic people. Nowhere did Steve refer to anyone as a hero.

I left that whole post taken aback by the use of the phrase ‘cosa nostra, our thing’. It seemed to me that Larry was claiming that Neurodiversity was solely the province of autistic people. This opinion was reinforced when Larry followed up his first comment on Steve’s blog with this:

Your blog which I have commented on talks about parents, it seems to me that neurodiversity has been hijacked.

Now I was genuinely alarmed. Firstly by the thought that autistic people might think that parents on the Hub was hijacking the issue of neurodiversity but even more so by Larry’s obvious and growing inference that neurodiversity was strictly something to do with autistic people and no one else.

That bothered me a lot. It is most certainly not what I thought neurodiversity was and most certainly not how I had had neurodiversity explained to me.

It was at this point that I first began to suspect that there was considerably less to Larry than I had ever thought. However, I asked in my next comment if autistic people would tell me their thoughts. They were pretty much in line with my thinking. Four commenters who are autistic essentially said that autistic people should lead but they were very happy with how the Hub worked.

So now I was perplexed. What was _really_ going on here?

Larry’s next few comments were about his personal history with the disability movement and how it evolved. They seemed to be an exercise in meaningless verbiage.

I still had no idea why Larry felt that neurodiversity was solely something that belonged to autistic people or what specific thing(s) had happened to make him think parents were taking over the agenda. The opinions of the other autistic people who had posted seemed to reflect my bewilderment. In short, everybody agreed – as they always had – that the agenda of autism advocacy should be set by autistic people.

Larry’s next comment simply added to the strawmen.

What is worrying is when the outside world, the press will seek out non autistic representatives of this blog world to represent what neurodiversity is about.

The autism hub is not the be all and the end all of neurodiversity anymore than the aut-advo list is the sum total of autistic self advocacy.

Again, it is clear from the first quote that Larry firmly believes that neurodiversity is the sole province of autistic people. His second quote is a total strawman – who ever claimed that the Hub was the be all and end all of neurodiversity?

By this point I was getting frustrated and increasingly annoyed at Larry’s evasion. His further comments only served to increase that annoyance:

As far as neurodiversity not being an autistic only thing, that is a comment I have been making for sometime with my dyslexic hat on.

This is at direct odds with Larry’s previous statements such as : _”What is worrying is when the outside world, the press will seek out *non autistic representatives of this blog world to represent what neurodiversity is about*.”_

It was becoming increasingly clear to me that Larry was being evasive and dishonest when representing his own opinions. I had made the point numerous times by this time that Larry was failing to take into account the fact that neurodiversity was _not_ solely about autism, that there were lots of other ways of not being NT and also that there were plenty of bloggers on the Hub that were both autistic _and_ parents.

All in all, I asked Larry about eight times to provide examples of what he was talking about e.g. where bloggers on the Hub that he knew were definitely NT were trying to wrest the agenda away from autistic people. He never did.

There was plenty more bloviating passages of prose about the history of the disability movement but that was about it. There was – after I pinned him down – an admission that:

neurodiversity does not belong exclusively to autistics it is an evolving culture

Which was a great relief to hear.

However, I’d reached a pretty firm conclusion by this time on what Larry’s motivations were based on his words and deeds. He is an attention seeker who is annoyed that he isn’t the story. Throughout this entire episode he has made accusations that he is unable to backup, he has switched positions when exposed in his illogic and has demonstrated a nasty tendency to turn neurodiversity into The Larry Arnold Show.

The final straw for me was when he told me that the work that some of us had done with mercury/vaccines was actually misrepresenting autistic people and/or neurodiversity.

Since than I have been inundated with email, primarily from autistic people, telling me that my suspicions are correct. Larry like to ensure that Larry is the show. These are people who have known Larry online I’ve also heard from one person that Larry comes from a philosophical perspective that likes to blow things up and then see whats still standing to work with. That isn’t a philosophical perspective, thats just stupid.

Lets boil down Larry’s actions and words into a nutshell. He invented a problem and then couldn’t back up his claims. The guiding principles of the Hub are laid out on its homepage. If Larry or anyone else can show me where there is a growing cadre of parents abusing those ideals then we can act. Until then, the only issue is how Larry deals with his tendency to overblow nothings into somethings in order to bask in the attention.

Think I’m being too harsh? Well, I’m just emulating Larry and trying his trick of pretending everything is a pseudo-intellectual exercise in destructive philosophy.

Larry once said:

As for what people consider people to be, the evidence is in the actions not the protestations of innocence.

Which I’m guessing is his way of saying ‘actions speak louder than words’.

This parent blogged about the Judge Rotenberg Center.
This parent blogged every time an autistic child was murdered.
This parent blogged when quacks abused autistic people.
This parent blogged when autism was misrepresented in the media.

Those were this parents actions. I’m not sure what Larry’s were.

NT Parents cannot be leaders when it comes to autism advocacy. Did they ever want to be? Were they trying to be? No. I’ve seen nothing that would indicate they were.

The events of the last few days will have an impact. This was played out – and will continue to be so played out – against the backdrop of the web. The web was the enabler that brought autistic people and the parents of autistic people together. As this plays out, the web will record everything. Parents who ‘found’ neurodiversity via the web will find this too.

Right now we stand at a crossroads of opportunity. Right. Now.

Autistic people have had a horrendous time in the past. I know as much from reading the emails and blogs of those who survived it. They have been let down by parent organisations time and again.

But that was the past. At some point autistic people who do not trust parents are going to have to start. We are not those same people who let you down. We came to autism advocacy via the words of autistic people. We did not come via parent led organisations. You call the shots. We get it. Continually harping on what parents have done to you in the past is pointless in this respect. A non-autistic parent being interviewed about a website he created is not a threat to you or your autonomy. Please stop living in the past and try to see the opportunity of right now. Again, we do not want to lead you, we want to support you.

What do you want? An opportunity to wield the power of both autistic and non-autistic people? Or do you want to carry on putting your hands over your eyes, ears and mouths and reminiscing about ‘the bad old days’? Has it really got so bad that now you actually have the opportunity to use this power that you have to invent factions where none exist in order to escape the responsibility of using it? Now that you are very close to getting what you say you’ve always wanted from parents are you worried about accepting the mantle?

Parents are not perfect. We are much newer to this than you. Even those of us who, like me, are not NT but are not autistic either, and who have fought our own battles through the decades are not spat out of an allies-factory somewhere, ready made with all the right answers and actions. We *will* screw up. We *will* get it wrong. We need you to guide us in these times. If you want to lead, then act like leaders.

And the last thing we need is vainglorious challenges to our non-existent actions when you are unable to point out exactly what it is we’ve apparently done. This world we cohabit in is difficult enough without having phantoms to fight.

I would also urge some of you autistic people to be very careful of your own neurobigotry. One person has said that my actions are a total overreaction. Maybe. However, my own neurology makes this impossible for me to avoid sometimes. Would this person be happy with me if I said that their actions were totally antisocial? Or if I said that their inability to perceive a differing neurology indicates their lack of theory of mind? Or would I be accused of ableism? This person also said I should make every effort to separate the message from the personalities involved. I have. My neurological make up makes that very, very difficult to do but if I want to try and pass as normal I can sometimes do it. However, I was surprised to hear such encouragement to assume normalcy from someone I always considered a strong advocate for being who you are at all times.

This entry will solve nothing. Its not intended to. Its merely me letting off steam. I still have no idea about what neurodiversity is anymore or my role (if any) in that movement. I still have no idea what to do with the Hub. However people can rest assured Larry will have no role in deciding its future.

Father knows best?

31 May

Larry made a couple of comments on my last but one post regarding the vaccine/autism link that puzzled me a bit. I thought at the time that he’d missed the point.

Larry is not quite as enamoured of science as I am – fair enough – although he sees the dangers of the anti-vaccine lot he sees a wider picture. Thats what he was trying to get at.

Trouble is, of course, that blogging is not a great medium for seeing a wider picture. Blogs of all kinds tend to hone in over time on a very particular idea. For this blog, its become the poor science sometimes associated with autism. This is inevitable as a blog ‘ages’. I write about this as I feel it is vital to expose the end result of autism related quackery. Injury, abuse and death.

Around the same time, there was a brief flurry about an article concerning Sigourney Weaver’s take on autism, which is refreshingly positive.

I was going to blog this article myself a few times but there was something bothering me about it that prevented me. I click on to what it was yesterday after thinking about Larry’s comments. Here’s an excerpt from the article:

The movement has a strong Web presence at such sites as Neurodiversity.com, Left Brain/Right Brain, Autism Diva and The Autism Acceptance Project, http://www.taaproject.com

So what’s wrong with that? Its great to get a mention, of course it is. But what bothers me about it is that, of the four sites listed, only _one_ is owned and run by an autistic person.

That isn’t right. That’s wrong. Something has gone wrong when the web presence of ‘the movement’ is painted as being mainly non-autistic.

Larry wrote a piece yesterday that elaborated on his thinking.

I am there for the same reasons as I am becoming critical of a lot of posting in the autism hub itself, because I believe in the reasoning behind the slogan “nothing about us without us”

I have to say it, but the problem is that important though it is to disabuse the public of the notions that mercury poisoning = autism (which nobody much believes in the UK as we are still too busy blaming MMR) , important though that is, that is not where the main fight is, and that is to realise that autism is for life, and because most of us spend more of our lives as adults than children, that there we must have proper recognition and a place in society.

Furthermore, that although there are ‘good parents’ who agree with that and want it as an aim for there as yet young children, the message has to come primarily from us not them. If the parents continue to evoke that old line “but you can speak for yourself my child cannot” they run the risk of effectively taking our voice away, because we are the ones with the condition?

I’ll be frank, it took me aback to think that Larry though that way about the Hub. However, he does and it needs addressing. And as much as I might want to take the easy way out and pooh-pooh it, my mind keeps coming back to that article listing the web presence of ‘the movement’ as mainly non-autistic.

This is not to say I agree 100% with Larry as I do not. I do not think that ‘the message’ should come primarily from autistic people, not parents. I believe it should come from both, equally. However, I believe that the message should be formed by autistic people and those of us who are not autistic should support that message. I also know that Larry’s assessment of the situation in the UK regarding mercury is sadly wrong. It is getting worse, not better and it needs to be actively challenged and fought.

However, I _do_ agree that the science/medical issues are very much secondary to the fight as Larry defines it. I _do_ agree that no parent who claims to be an ally of autistic people should be using the line “but you can speak for yourself my child cannot” and I would be horrified to think that any parent on the Hub _has_ used that line or any equivalent of that line. I _do_ agree with the adage (to paraphrase) “nothing about them without them”.

So what do we do? I cannot ignore this, but at the same time I will not stop blogging about what _I_ care about.

What needs to change? I think the Hub needs some addressing. I have a loose system in place wherein any entry I’m unsure about I refer to two other people, at least one of whom must be autistic for their decisions. If it requires a casting vote then I do that.

Maybe the Hub requires more direct control from its autistic members? How would that happen?

Any other ideas? What else can happen to address concerns like Larry’s?

Autism Omnibus crashing?

30 May

Another few points of interest in the Autism Omnibus proceedings.

Firstly and perhaps most significantly is the defining of the Omnibus proceedings as being at ‘crisis point’ by the Special Masters overseeing the case:

Petitioners were supposed to provide (by their own suggestion) test cases that would show, in the first instance, how MMR and thiomersal working in combination would cause autism. Special Masters agreed to this arrangement and dictated that three cases would be needed. So far, only one out of the 4,700 cases in the Omnibus can be found.

At (the) first status conference in December 20 2006, when the PSC (Petitioners – the parents) first proposed moving to a test case format, Special Master Hastings advised the PSC attorneys that for a ‘test case’ approach to be effective, the PSC would need to offer additional cases, rather than a single test case, for trial. Since that time, the PSC has stated that it will select two such cases, and has represented that it is working diligently on selecting the two cases. At the status conference held on Jan 25 2007, the PSC was orally instructed to designate such cases within 30 days (i.e. by Feb 24 2007). The PSC did not do so. At the status conference held on Feb 28 2007 the PSC representative stated that the teo cases would be designated within seven to ten days. That did not happen. After further discussion, we extended the deadline for designation until March 30 2007. that date, too, passed without any designation. At the status conference held on April 2 2007, the PSC attorney stated that the two cases would be designated on April 6 2007 but no designation was made by that date either We then extended the deadline to March 30, then again May 10, but, still no additional test cases have been designated.

So, out of the 4,700 cases filed under the Omnibus, apparently only one can show a theory about how MMR and thiomersal, acting in unison can cause autism. Which is weird considering that its a ‘fact’ amongst adherents of the vaccine hypothesis.

And how about that one case – Cedillo – what does that show?

…without going into detail, we note that the facts of that one ‘test’ case are fairly unusual and do not appear to be representative of the majority of the cases in the OAP (Omnibus Autism Proceedings).

Good grief. Could it be that, from the 4,700 cases in the Omnibus that there are _no cases_ representative of a general theory of how MMR and thiomersal working together cause autism? Back to the Special Masters – the emphasis in this passage is theirs, not mine.:

We want to stress that we believe we are at a _crisis point_ in the efforts to move the autism cases towards decision. The Office of Special Masters has adopted the approach toward these cases originally suggested by _petitioners’_ counsel and we have patiently waited almost _five years_ to give that approach a chance to succeed…..Either something must change or we will be required to go to a new approach.

And then the bombshell:

In the event that petitioners do not promptly come forward with additional test cases to allow us to pursue the ‘test case’ approach described above for handling the autism cases, it appears that the ‘omnibus approach’ to the autism cases may have to be declared a failure.

That is some pretty direct language. You’ve had five years, it says, we’ve done everything your way. Now shape up or ship out.

Things got worse for petitioners. For years they had been claiming that they couldn’t move forward without certain data (VSD data) being made available to them. It would seem that the Special Masters have seen this for the delaying tactic it clearly is as they have denied this motion.

They have denied it because they (rightly) claim that it is unnecessary and involved a lot of irrelevant data. They also note that petitioners should be able to make a case out of what they have and that petitioners failed to provide a good reason why this data was needed. Special Masters noted:

Finally we note that the PSC itself states that ‘the petitioners could very well establish general and individual causation in these Omnibus claims _without epidemiological evidence_ ‘

That’s what bragging gets you I guess.

Update: Daubert Ruling

The Special Masters also ruled on the applicability of Daubert in the Omnibus cases. Before we discuss that, lets have a brief refresher as to what it is.

Daubert is a legal precedent in the US that essentially makes the presiding judge the arbiter of good science. They _must_ under Daubert apply a very high standard of science. It speaks volumes that Martha Herbert, Boyd Haley, Mark Geier have all fallen foul of Daubert in the recent past. Under Daubert, Haley and Geier’s science was adjudged to be of such low quality that they never even testified – they were barred from doing so.

OK, so. Respondents asked the Special Masters to ensure that Daubert standards were applied to the causation issues in the Omnibus hearings. They even asked that four ‘expert’ witnesses be excluded under Daubert which was a legitimate thing to do.

If the Special Master had agreed with that request than that would have been game over for the whole Omnibus hearing. No expert witnesses = no causation = no case.

What the Special Master has actually done is not quite that, but Plaintiffs should be very concerned. The Special Masters have agreed that Daubert standards should play an extensive role:

I agree with respondent that the principle that scientific evidence must be evaluated for reliability, set forth in Daubert v. Merrell Dow Pharmaceuticals….does have application to Vaccine Act cases.

That is big news. Plaintiffs need to realise that their science is going need to be of the utmost quality. However, the Special masters have decided that this proceeding is procedurally different enough that a small wrinkle should be introduced. This is a non-jury trial. In a jury trial, Daubert can be used (as I mentioned above) to exclude poor quality expert witnesses. This could also happen in a non-jury trial but the Special master has elected to not go that way. What they have decided to do is:

I conclude that the best procedure is to hear the testimony of the expert witnesses in question….I can then evaluate the reliability of the expert testimony in question [in the context of Daubert] and determine what weight it should be accorded, if any.

So, Daubert will apply, but instead of being used to exclude the possibility of juries hearing poor quality expert witnesses, as this is a non-jury trial, Daubert will be applied directly to the proffered testimony of the expert witnesses.

Whichever way you cut it, this is not good for Petitioners. They were staunchly opposed to the Daubert standard being applied at all as they knew it would mean that scientific standards of proof would apply. Standards that Boyd Haley and Mark Geier have already failed to meet in previous thiomersal/autism cases.

On media, neurodiversity and science

29 May

Opinions vary as to why I, and many of my online friends believe what we do. The answers cannot be easily encapsulated but an indication is given by the source of the two links I’ve just linked to.

The first group believe autism is not just a disability, that it is both more and less than that and that whatever the aetiology of ‘it’ is, it is likely to not have a single cause and further, if it does or if it doesn’t, the fact that people are autistic is a state of being (a property of their personhood) that is deserving of respect and tolerance. After all, if we can tolerate difference between sexes enough to think of a toilet seat that raises or lowers as a natural aspect of functional life then we really should be able to make the minor adjustments necessary to accommodate the needs and requirements of autistic people.

The second group believe in the scientific method. They believe that in matters of science, that the rules of science should be applied.

There is some major overlap between the position of these two groups. There are a number of bloggers on the Autism Hub and an even larger number of readers of blogs on the Autism Hub who are bloggers on Science Blogs and/or readers of Science Blogs’. A number of bloggers who have autistic children are scientists of various disciplines.

It is worth noting however that these two groups are not synonymous. I know of a few people who believe in the basic essence of neurodiversity who also think vaccines damaged them or their children. This is because they know that even if vaccines did do damage, they or their kids are still deserving of respect. Conversely, I expect there are a few science bloggers who would not agree with the standpoint of neurodiversity and would ferociously chase a cure.

But these people are the exception. By and large these are two groups who share a mutual opinion that the only way to progress our knowledge of the science of autism is to use the scientific method. Science is now, thankfully, beginning to catch on to the idea that the best way to get knowledge that may help autistic people is to listen to autistic people.

At MIT Amanda Baggs has been working with the science team there in ways that will result in positive and scientifically valid ways of helping autistic (and other) people.

Estée also gave a presentation at MIT (the second talk was fuller than this one) and she also noted Michelle Dawson’s ongoing role at the University of Montreal.

This is all good progress. It’s exciting to watch these things develop and to see the possibilities that might spring forth from these alliances and how they might benefit my daughter and autistic people generally.

I believe in the scientific method. I believe science has done more than anything else to take us closer to understanding the universe within us and around us. I believe that the naturally occurring alliance that is being forged between autistic people, their allies and science is absolutely the correct way to go. Neither side is seeking to change or alter the other but to understand each other and benefit from the union.

If I want to see an example of how _not_ to do things, I need look no further than (you guessed it) the mercury militia/malicia. These are people who have taken the polar opposite view. They eye science with distrust. They refuse to accept that the results of studies that disagree with their stance can be correct to the extent that they threaten those scientists with violence, or they ignore science and instead disagree with the wording of press releases about science. In fact, this is Lenny Schafer’s view (from a past SAR):

Myself and other autism activists believe there is enough evidence to support a causative relationship between mercury and autism in a court of law, in front of a jury, where standards of evidence are different than that of the narrow focus of scientific findings. And if you can convince a jury, you can convince the public.

Make no mistake, by ‘different’ Schafer (correctly) means looser, way, way looser. He does not want scientific standards to come to play in determining the vaccine/autism connection. The reason why is absurdly obvious.

The scientist and author Michael Crichton once gave a speech about environmental issues that may as well have applied to the autism/vaccine issue:

…Proponents are pressing their views with more PR than scientific data. Indeed, we have allowed the whole issue to be politicized—red vs blue, Republican vs Democrat. This is in my view absurd. Data aren’t political. Data are data. Politics leads you in the direction of a belief. Data, if you follow them, lead you to truth.

On the EoH group where Lenny Schafer is kingpin, there is currently something of a growing schism between Lenny, John Best (e.g. the more hardcore loony element) who believe that Aspergers Syndrome is not a disability and is not part of the spectrum and hence is not autism and a lot of other people who quite obviously have AS kids and are disagreeing very strongly with Lenny’s extremeism. As part of that debate, Lenny made the following statement:

I would like to think of what we do here is public debate, not “fighting”.

This illustrates perfectly the kind of denialism that exists amongst Lenny and his members. The Yahoo EoH group is a closed access list. You can only access the group if you join up and are accepted as a member, which is what I did back in 2005. Yet Lenny really believes that this closed access list is public debate. He _has_ to believe this as he is a firm believer (as we have seen) of political and legal definitions of autism and autism aetiology. In his world view, you need to _manage_ the PR. You need to nudge it in the right direction, much as Lenny’s colleagues from the NAA did when they lied about Paul Shattuck as they disagreed with his results.

By contrast, the Autism Hub bloggers operate openly. Their opinions are challengeable directly on their blogs. Good science is challengeable. It can be challenged by using the scientific method. There is no ‘management’ of information going on here. No one flip-flops between crucial elements of their beliefs and hopes no one notices (such as Brad Handley has done).

The interviews I have done (and am doing now) have been to periodicals that concern science or touch on the science of autism from a parents perspective. I noted with no small amusement this morning that ‘the other side’ are resorting to interviewing each other – Erik Nansteils Autism Media site carries an interview of David Kirby interviewing Katie Wright. I bet that’s an in-depth and truth revealing interview.

I believe that promoting connections between autistic people and science is the absolute best way to get good science regarding autism. I hope to do my bit in making the web work _for_ the promotion of these connections. I hope that our growing community never gets sucked into the tarpit of closed access lists that crow about the achievement of ‘converting’ celebrities and media persons. This is why I set up the Autism Hub and the Autism Parents Forum. So that we can grow as a community and come closer together. I hope to do more of this in the future. I want my email contact list to be full of the names of autistic people, scientists, responsible authors such as Arthur Allen and Brian Deer and parents that, like me, want to benefit from this growing relationship. I couldn’t care less if I never get Lou Diamond Phillips or Don Imus’ email address.

Media and politics or science? When it comes to understanding the science of autism, which will yield better results? Bear this in mind as you consider your choice – science is amoral. You cannot hide, distort or disfigure scientific achievement forever. If something is scientifically accurate, its truth is self evident. No matter how many politicians you have in your pocket, no matter how many media contacts you have, gravity will always be a force of attraction. The power of repulsion belongs to those who would deny that.

Lenny Schafer’s Delicious Cheap Shot

24 May

It’s no secret that I don’t think much of either the reasoning powers, nor general behaviour, of the collection of individuals that populate David Kirby’s ‘Evidence of Harm’ Yahoo Group. Every time I think they can’t surprise and disgust me more, they manage it.

This is the group of people from which sprung an anonymous email referring to Megan as a ‘little bitch’. This is the group of email who have attacked autistic people viciously and repeatedly. It beggars belief that a group of people who are parents to autistic people could be so disrespectful to autistic people when they claim to be ‘the autism community’. But then, how could anyone expect anything better from parents who refer to their own children as ‘dull witted’.

A member of the EoH group has compared my daughter to a monkey when i described how well she was progressing. This same member later said on his own blog:
….My wife bought too many bananas so I’ll send some for your daughter …..

and followed that up with

…Perhaps you can teach your daughter to swing from tree to tree…

This is ample evidence of the sort of people who infest this particular corner of Yahoo.

However, if more proof were needed, today Lenny Schafer, creator of the EoH Yahoo Group established once and for all the level of disregard for children that the EoH group has.

Schafer posted this story to the EoH list today. It concerns a scumbag who has over 100,000 images of child porn in their posession. As part of this scumbags defence, he is claiming he is autistic. Take a place in line behind Cho, scumbag.

Schafer, however, altered the headline so it read:

Prison Ordered for NeuroDiverse Man With More Than 100,000 Child Porn Pictures

and offered this commentary, accompined with a link to this site:

OK, so I added “ND” to the headline to make it more politically correct for all those mercury apologist ghosts lurking on our list. The ND sword cuts both ways. Sometimes you just can’t pass up a delicious cheap shot. Lenny

A delicious cheap shot.

I’m so very happy that Lenny Schafer finds the idea of utilising the torture, rape and suffering of children as an opportunity for a delicious cheap shot as in any way an acceptable thing to do. Schafer doesn’t like neurodiversity. Thats his right. He should campaign against it as hard as he likes. However to utilise the suffering of children in his demonisation is beyond sick.

Lenny Schafer might want to look to the top right hand corner of this website. In it he will find a picture of four year old Madeline McCann, a baby girl who was abducted from her holiday home three weeks ago. That picture has been on my site for almost a fortnight now. Its on the website of many UK residents.

No doubt Lenny Schafer and the antivaccinationist ignorati who surrounds himself with will pat themselves mightily on the back for getting under my skin so much. Because they have. I don’t think you should ever make light of the abduction, rape and torture of children.

I put up that picture of Maddy in the hopes that maybe – a slim hope – someone who knows something might see it and do something which would mean she was returned to the arms of her parents.

I have also colluded with people Lenny Schafer considers friends in the relatively recent past after it was made known to me that an author of an autism book who was friends with a DAN! doctor was a paedophile. I did this to ensure no children would fall into these people’s clutches.

You made your cheap shot Mr Schafer. I hope you found it ‘delicious’.

Geiers, Jim Adams – oh and some science

22 May

As I alluded to in my last post, there’s been a glut of publications regarding autism and thiomersal/mercury of late.

First (as they reached me) was Jim Adams latest nothing paper. Do’C has the full story but the salient points to take home about this study is that:

There’s plenty of other silliness in this paper, including citations of Geier and Geier, and a tiny sample size that produced data that I think most people would look at and ask, “so what?”. But the bottom line is this – is the authors’ conclusion supported by the data?….Neither mercury body burden nor excretion was demonstrated to be related to mercury levels in teeth, autistic children were not demonstrated to be “poor mercury excretors”, and high usage of oral antibiotics was not demonstrated to impair mercury excretion in humans.

An interesting side note – this paper was published in a journal that recently published the latest Geier twaddle. Seems like the editor likes a bit of woo. As Do’C uncovered from the editor of this journal:

“According to the literature there is a relationship between vaccines and autism.”

Which is weird as numerous literature reviews have shown the exact opposite. Either the editor is a very credulous sort or…well, no, he’s just a bloody idiot.

Now we turn to a study called ‘Lack of association between Rh status, Rh immune globulin in pregnancy and autism‘.

This study looked at:

whether mothers of children with autism are more likely to be Rh negative (Rh-) or to have received RhIg preserved with thimerosal, which is 49.6% ethyl mercury

So – do kids with autism come from a population who’s mothers had received RhIg? Thats what this study asked. The answer was:

Rh- status is no higher in mothers of children with autism than in the general population, exposure to antepartum RhIg, preserved with thimerosal is no higher for children with autism and pregnancies are no more likely to be Rh incompatible. This was also true for autism subgroups defined by behavioral phenotype, gender, IQ, regressive onset, head circumference, dysmorphology, birth status, essential, or complex phenotype

Of course, this answer didn’t suit SafeMinds Mark Blaxill. He released his usual pontificating crapola:

The study was funded by Johnson & Johnson, the largest manufacturer of RhIg products and the defendant in several lawsuits alleging a link between autism and mercury in RhIg. In an earlier 2005 poster presentation, the study authors acknowledged that the research was “supported by Johnson & Johnson Pharmaceutical Research,” but the University of Missouri press release omits mention of this conflict of interest.

Last I heard Marky, scientists don’t write press releases. Marketing depts do. As you yourself admit, when the poster version of this paper was presented, the *authors* (as oppose to the marketing dept) *did* acknowledge their funding. So, whats your point? That Missouri University Marketing dept. screwed up? Talk about a strawman.

And lets top beating around the bush here. If defendants in lawsuits can’t fund science, then why is it OK for prosecutors to fund science? If you want to go down the ‘conflict of interest’ route than that means Geier, Adams and a whole host of others who have already profited to the tune of several thousand pounds and who stand to profit even more should be equally discounted.

The press release headline falsely claims that the “Study Finds No Link Between Autism and Thimerosal in Vaccines.” The study is about Rh immune globulin, and immune globulins are not vaccines. “The headline deceives the public,” noted Mark Blaxill, director of SafeMinds. “It says an autism-mercury in vaccines link has been disproved when the research did not do so.”

Once again Marky – try and assimilate the difference between a press release and the actual paper. The paper’s abstract doesn’t mention the word vaccine until the very last sentence – and then only to point out thiomersal is also in vaccines. None of Blaxill’s point address _science_ at all. They try and make a strawman out of a press release. A press release the scientists who wrote this _paper_ no doubt had no control over whatsoever.

Blaxill then goes on to say that SafeMinds found numerous errors with the poster presentation but neglects to state what they were. Guess we should just trust them.

And if we want further verification of the non-link between the Rhogam issue then we should look no further than ‘Rh and ABO Maternal-Fetal Incompatibility and Risk of Autism‘ published in 2006 (Zandi et al) which states:

Moreover, some have speculated that RhD immune globulin injections may itself increase autism risk due to increased prenatal
exposure to thimerosal [Blaxill et al., 2004], an ethyl mercury containing vaccine preservative used in some formulations. The current findings do not support the hypothesis that the risk of autism is increased due to existing potential complications of maternal-fetal incompatibility with or without prophylaxis, nor do they appear to be consistent with the suggestion that the use of prophylaxis itself may increase risk.

Of course, SafeMinds don’t mention this as it clearly demonstrates the quackery that Blaxill wallows in.

And by the by, isn’t it incredible that for a group of people who are now claiming it never was _just_ about the thiomersal (See Brad Handley’s amazing feat of flip-flopping for details) they are certainly clinging on like grim death to that fallacy?

And hey – what about all those ‘other things’ (usually in vaccines) that ’cause autism’? Well, another recent study looked at just how well the practice of provoking reactions using a chelator (DMSA in this case) actually worked. ‘24-hour provoked urine excretion test for heavy metals in children with autism and typically developing controls, a pilot study.‘ looked at:

…Seventeen children with autism and five typically developing children were enrolled in a pilot study to test for chelatable body burden of Arsenic (As), Cadmium (Cd), Lead (Pb), and Mercury (Hg)

And the results?

Fifteen autistic children and four typically developing children completed the study. Three autistic subjects excreted one metal in greater quantity during the provoked excretion than baseline. Two of these were very close to the limit of detection. In the third case, the provoked excretion of mercury was between the upper limit of normal and lower limit of the potentially toxic reference range.

In other words – none of the kids, autistic or otherwise had clear progression into the toxic range of body burden of any metal. Three autistic kids had slightly higher results when DMSA was used to provoke than when it wasn’t. However, again, none was high enough to get into the toxic range. And as for the third autistic child, the team did one more thing:

Fish was removed from this child’s diet for greater than one month, and the provoked excretion test repeated. The repeat excretion of mercury was within the normal range.

Hilarious. The conclusion:

In the absence a proven novel mode of heavy metal toxicity, the proportion of autistic participants in this study whose DMSA provoked excretion results demonstrate an excess chelatable body burden of As, Cd, Pb, or Hg is zero.

Zero. None. Nada. Zip. Bugger all.

Lets hope that this pilot study is expanded upon and replicated.

And talking of chelation studies, Diva has some hot gossip regarding the fate of the NIMH chealtion study:

Dr. Swedo was running a chelation study at the NIMH until recently. The word, coming from a reliable source, is that the study has been shut down. This is good news, because it was a horrible study with horrible ethical problems and no legitimate scientific underpinnings. The study still appears on the clinicaltrials.gov page, but the link to the NIMH page is dead. So maybe the study rests in peace, too.

Last, but far from least, a fascinating theoretical study called ‘The Autism Epidemic: Fact or Artifact?’ has looked at the epidemic wankfest:

Using a prediction analysis, we calculate how broadening diagnostic criteria, younger age at diagnosis, and improved efficiency of case ascertainment could produce temporal trends in the incidence and prevalence of AD.

and what did they come up with?

Time trend studies report an increase as large as 11.0-fold over a 13-year period for AD. Conservative changes in the three methodological factors produced increases in the frequency of AD ranging from 2.1- to 28.8-fold

Interesting stuff. Hardly conclusive, but certainly food for thought. I can’t help but note that it comes from researchers at Columbia University. I wonder what that other CU employee Mady ‘they chewed through my skull’ Horning thinks about this study?

Thoughts ‘n stuff….

18 May

I haven’t blogged much over the last couple of weeks. I’ve got 4 large projects on at work and truth be told, after long days slaving away over code and imagery and managing peoples expectations I really don’t want to sit in front of a PC in the evenings either.

This is a shame as there’s much to blog about in the world of autism, the evil ND [twirls moustache evilly] and notably autism and the good old feeling-like-an-old-friend mercury uh, connection. I will blog them (an exercise which is becoming increasingly like prodding a dead fish with a stick as it floats on the surface of a scuzzy old pond) but right now I’m as offline as I ever get. Luckily Dad of Cameron is still happily prodding away – most recently at the new Jim Adams study. And of course The Hub is still going well. Also, this site’s daily visitors are still climbing – certainly more than some other sites are. And hey! – by the look of the trends of a certain site it looks like the message about DAN! is getting through.

Anyway, enough cheap gloating. MOM-NOS, in a moment of madness put me forward for a ‘Thinking Blogger’ award.

Thinking Blogger Award

The official rules for participation in the Thinking Blogger Awards meme are as follows:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,
2. Link to this post so that people can easily find the exact origin of the meme,
3. Optional: Proudly display the ‘Thinking Blogger Award’ with a link to the post that you wrote.

MOM-NOS explained her reasons for nominating me as follows:

When I was new to blogging and new to the concept of neurodiversity, Kevin scared the daylights out of me.

And some people say neurodiversity is a cult – I tell you, after me scaring the living shit out of people and browbeating them into submission, its the work of minutes to get them to sign over their souls to the evil Neurodiverse in blood – MWAHAHAHA!!! come to a rational decision with no coercion at all (free tshirts!!).

In all honesty, being nominated for this particular meme/award by a blogger such as MOM-NOS is humbling. There are several writers on the Hub that I love to read. Amanda, Kathleen, El Diva (for the snark), Mike Stanton and MOM-NOS. This is by no means to suggest the rest are terrible but I would happily buy books written by these people (which is why I excluded Sue from that list – I already have bought a book written by her).

So I will wallow in self indulgence on this, the recognition of my dual good nd/bad nd personality and waffle on for a bit.

Blogging is an odd thing. Its not really journalism (although Kathleen is getting about as close as its possible to get) and its not just a web site. I started this four years ago next month and (as Brad has graphically – and somewhat redundantly – illustrated) it charts a period of my life that has gone from utter ignorance about autism and science to a stage where here, now, I have friends I consider important to me who are either autistic, live thousands of miles away, live a few miles away from me etc. I’ve been quoted in scientific journals, been interviewed, swap emails with scientists and doctors who are active in the autism community.

Damn. How did that happen? I’m not a particularly skilled wordsmith. My grammar sucks donkey balls. I veer wildly between icy, brittle British overpoliteness and the written equivalent of a cudgel. Meh. Such is life.

None of this is a cue to tell me how great I am. I already know I’m not interested in fishing for compliments.

So what did I do to deserve a ‘thinking blogger’ from someone of the written quality of MOM-NOS?

I *hope* what I do/have done is become part of a blogging community of a wide and beautiful diversity of humanity. I don’t know about you Dear Reader but my feed reader is full to bursting these days.

What I hope I have done – what I strive to do every day – is to offer a set of tools for this community to become louder, more communal, to reach out to the untapped natural audience ‘out there’ who believe in equality, diversity and optimism. When I die, my epitaph can read – Here Lies Kev: He Incited An Angry Mob. Thanks. You Bastard.

Enough. I’m supposed to nominate five blogs that make me think. This will be tricky as a lot of my favourite blogs have already had this meme/award bestowed on them. Am I allowed to replicate? I better not.

1: Nidahas is a web development blog run by a Sri Lankan friend of mine – Prabhath. His was the first blog discussing web development I can recall that included the fact that its author came from a developing nation. Insights galore.

2: Juicy Studio is a web dev blog that concentrates on accessibility issues. Gez (the owner) and I have known each other online for what must be about 6 years now. Good grief. Did I say he’s a genius? No? He’s a bloody genius.

3: Dr Crippen. Great name, great blog. If the NHS ever gets sorted out it will be in no small part down to the efforts of John. A one man anti-Hewitt machine.

4: Joel Smith. My first encounter with Joel’s words was via the horribly necessary list of killed autistic people. Shocking and eye opening. Joel writes calmly. I admire that as I struggle with it.

5: Mike Stanton. Again, another calm writer. Dammit. I really must learn how they do that. I often find myself back at Mike and Joel’s sites cross-referencing things.

So – that’s it I think. Back to my temporary hibernation.

DAN! Doctors – The ‘other’ list

12 May

The eagle eyed amongst you will have noticed a new main menu entry at the top of this page between ‘wiki’ and ‘contact’ called DAN! Doctors.

This page contains a (worryingly long) list of some of the people with the loose honorific of ‘DAN! Doctor’ who are on the official ARI list. However, unlike the ARI list, this list will tell you the ‘other’ side of the happy-clappy hero’s of DAN! It contains notes on prosecutions, license suspensions, criminal acts and current investigations.

I can take absolutely no credit for the compilation of this list. It was handed to me by someone who wishes to remain anonymous.

This is a static page at the moment. In the near future, this page will move to its own domain and website and be driven by a database backend as it grows (as I’m sadly sure it will) however I wanted to get this up as quickly as possible.

The bottom line is that over 10% of DAN! docs (that have been looked at so far) have been in trouble. Trouble ranges from killing a patient, to paedophilia, to gross negligence to tax evasion. If you know a parent considering a DAN! doctor then make sure they read this list first. At the very least, even if they do decide to go ahead, they can avoid the bad guys.

Cho Part II

7 May

Since my first post on the subject of Cho, the Virginia murderer, I have received some very interesting blog comments and personal emails.

There’s a common theme running through these which can basically be summed up as:

You’re being too harsh on Cho. Believe me, I almost did what he did…

There are numerous issues I have with these statements and their unspoken implications.

Firstly, if you nearly did what Cho did then I congratulate you – _because you didn’t do it_ . You realised that killing people indiscriminately was wrong. Cho didn’t. Or, more probably, he did and decided he wanted to anyway.

Up until the moment he pulled the trigger, someone like Cho would’ve had my utmost sympathy. The second he pulled the trigger, the second he elected to kill people then he became a scumbag undeserving of mitigating circumstances. Race, autism, gender – whether any or none of these played a part is irrelevant the second you murder people.

The underlying motive for Cho’s actions according to lots of people is this bullying element. Is there any actual clear evidence that he _was_ bullied? I don’t mean that rant he sent to get his posthumous 15mins of fame, I mean actual evidence. Further is there any evidence that the pupils and staff he murdered were the people doing the alleged bullying?

Cho’s first victim was a girl who rejected his romantic overtures. How did it come to pass that it is OK to virtually disown this murder victim as a bully and try and find excuses for Cho’s inability to get over his rejection? Cho’s second victim was a man who tried to help this first victim. How did it become OK to disown this murder victim as a bully?

Last year, several autistic kids were killed by their parents. Utter outrage was voiced in the community I am part of and the utterly correct stance was taken that murder is murder and to attempt to rationalise (in terms of a lack of services for example) was wrong. I am bewildered to see some people in this same community now suggesting, or implying, that we need to look deeper on this issue. What happened to murder being murder?

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