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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?

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’.

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.

Generation Rescue II – This Time It’s Vague

3 May

As already blogged by Steve and Orac, Generation Rescue have undergone a change in both website and message.

Up until this week and for the last two years, Brad Handley – GR Head Honcho has promoted a message quite unequivocal:

“Autism is treatable. It’s reversible. It’s nothing more than mercury poisoning,” said JB Handley, founder of Generation Rescue.

In fact, giving a reason for the redesign of the site on Orac’s blog, Brad said:

From my perspective, our website and its message have always been broader than “its ONLY mercury”…

Huh. Weird. Maybe its just me but I detect a teensy-weensy inconsistency between those two statements. Lets switch to the video!!:

And for the non-video-blessed amongst us, what Brad said was:

We immediately realised…and I think this is something that is a big surprise to people….um, that autism is a misdiagnosis for mercury poisoning.

Riiight. So let me see if I can summarise the position. When there is no science to have an informed debate about mercury, and when there’s lots of scary sounding stuff like ‘the Amish aren’t vaccinated and have no autism’ or ‘CDDS proves the epidemic’ floating around then the situation is:

“Autism is treatable. It’s reversible. It’s nothing more than mercury poisoning”.

Now that there’s no science to establish a causative link between mercury and autism, plenty of epidemiology to refute it and now that the first piece of science on the Amish has shown that actually they do vaccinate and that the penny has finally dropped, even for David Kirby, regarding CDDS’ inability to support the epidemic, what is the Generation Rescue position now? Lets see shall we?:

Our children are experiencing epidemics of ADD/ADHD, Asperger’s, PDD-NOS, and Autism. We believe these neurological disorders (“NDs”) are environmental illnesses caused by an overload of heavy metals, live viruses, and bacteria.

Wow. So we’re now no longer talking about just autism. We’re now talking about ‘neurological disorders’, including ADD/ADHD which is not even classed as being on the spectrum. That is quite some turnabout.

And look at this! Now, we’re talking about a _combination_ of causative agents: heavy metals (not just mercury any more), live viruses and bacteria.

Incredible. Makes you feel almost sorry for poor old mercury don’t it? Last week it was the Terror of the High Seas. Now it doesn’t even make it as a distinct causative agent.

The ‘live viruses’ is in there to placate the Wakefield Worshipers who think the MMR also (or in combination with mercury) caused autism. The ‘bacteria’ mention is I’m guessing a nod to the Martha Herbert theory of mold causing autism – a theory that was described thusly last time Martha took it to court:

Dr. Herbert’s publications indicate that she is an outspoken advocate of increased attention to the possibility of environmental influences. Even she, however, despite that acknowledged perspective, speaks in her published work of possibilities and potentialities, rather than of the ‘reasonable degree of medical certainty’ to which she offers to testify under oath in this case. Neither Dr. Herbert’s publications, nor any others cited, identify mold exposure as even a suspected, still less a known or proven, trigger of autism

Going back to MMR and taking a brief side journey for a minute, here’s the latest update from the Autism Omnibus proceedings. When last we left it, Petitioners had put forward one family as a ‘test case’ to see if the whole Omnibus proceeding had enough merit to proceed. There were supposed to be three. Awhile ago, the court told Petitioners to hurry up and identify the other two. They couldn’t. Respondents replied with:

The Court ordered the PSC to find two cases (similar enough to the first) to present the same basic theory of causation…..the essence of its (PSC’s) response is that it does not know of any case presenting the same causation issues as are implicated in Cedillo.

Ouch. How long has this been dragging on? Five years or something? And out of the 4,700 cases in the Omnibus no other case can be found to match the first one put forward. The only people who must be enjoying this are the lawyers.

Anyway, back to Generation Rescue.

Of particular note is the much vaunted, never seen ‘California-Oregon Unvaccinated Children Survey’ of described thusly by GR:

no studies have ever been done to compare neurological disorder (“ND”) rates of unvaccinated children to vaccinated children. We commissioned a national market research firm to survey more than 17,000 children in California and Oregon.

National market research firm eh? How very scientific. Researching popular chewing gum, researching autism causation. Yep, they’re the same. Souds very much like a a ‘convenience sample’ where people are called up. Here’s a friend of Brad’s describing what a convenience sample is and is not:

So. Not data according to David Kirby. Bummer.

Generation Rescue have also revamped their ‘Testimonials’ section. This is the section I looked at I August of last year and reached a (very) rough figure of a 5% success rate for the kids talked about on the GR site where ‘success’ is losing the diagnosis:

Out of these 59 success stories, just 3 describe their child as having been reclassified as no longer meeting a diagnosis of ASD. That’s a ‘recovery’ rate of 5%. Interestingly, one of these cases states they did not use chelation at all. That puts the Generation Rescue chelation success rate at a little over 3%.

Now, Generation Rescue have 76 ‘success stories’ (except they’re not called that any more, now they’re ‘testimonials’). Of that number, 6 claim full recovery with total loss of diagnosis. That’s a percentage of 7.8%. A heady leap of over 2%. Woo-hoo.

I was drawn to some of the newer testimonials, particularly the 6 year old ones as Meg only recently turned 7. One of them, about a girl called Liz was fascinating.

Our daughter Liz was diagnosed with low functioning autism at age three. We blamed the DTP vaccine which she had a bad reaction to. She would have very long lasting meltdowns, she would smear faeces, she would exhibit self injurious behaviour, she did not talk at all, she avoided eye contact and her only activity was that involving toys that spun. She walked on her tip toes and the doctor said she had a low IQ (below 70). We were told by mainstream medicine that she was ‘unreachable’.

Today Liz is six and after following biomedical interventions (and some other things) Liz will talk – on Christmas morning this year I went to wake her up and she said ‘good morning’ to me. She no longer smears faeces and is 99% toilet trained, she can write notes to people and knows all the letters of the alphabet and can count up to 40 unprompted. She can use a computer mouse unaided and has numerous favourite websites. The self injurious behaviour is vastly lessened, as are the meltdowns. Her eye contact is now perfect and overall her sensory issues seem 99% under control. She can drink out of a normal cup and use a knife, fork and spoon to eat whilst sitting at the table.

In so many ways, this is a different child.

Why was I drawn to this little girl so much?

Because it’s Megan’s story. I assumed a false name – Mr Clarence House – and emailed it to the Generation Rescue site. ‘Clarence’ received an email saying it was going to be on the new site which I was very happy about.

All of it is true except the name. The biomedical treatments I was talking about were multi vitamins, fish oil and a steroid inhlaer for her asthma. The ‘other things’ were love, acceptance, patience and education.

Why do this? To prove a point. You can make anyone’s story fit your own beliefs if you twist it hard enough.

Don’t worry, if it disappears I took a loving screenshot.

Brad Handley has tried to shift his goalposts as his first guess wasn’t working out. As evidenced above, he has latched on to items that are equally silly. As evidenced above he is incapable of seeing autism. He only sees mercury. As evidenced above, improvement is not limited – or even related to – detoxification of heavy metals.

Time for changes

23 Apr

For those that missed it, my site got zapped over the weekend. I went over my bandwidth allowance. I usually shift about 14-15GB per month but this weekend I went over my 15gb limit – a whole 7 days early. Yikes.

The culprit was the Chelation video which shifted 5gb on its own and was pushed over the edge by getting linked from Orac. Not his fault at all, I should’ve been keeping a closer eye. Normally, the 5gb that the video took would’ve seen me through to the end of this month but this time I was flatlined.

My host is a good guy and offered me a gig for free to get me through to the end of the month but a gig only lasts me 2 days so I bought another 5gb per month, taking my monthly bandwidth allowance up to 20gb. This will give me a little breathing room.

However, I have to restructure some stuff that’s on here. One of those things is Meg’s blog. I’ve already moved it but in order to preserve its privacy I need you to do a few things if you want to keep on (or start!) reading it.

First head to the WordPress.com signup page and create an account. Just select the ‘Just a username, please.’ option and that’s all you need.

Second, when your account is created, mail me your account name and the email address you specified when you signed up so I can add you as a user of Meg’s blog. Only registered users can see her blog and only I can add registered users.

That’s it, that’s all you need to do.

Other changes:

I may be redesigning this site to reduce the imagery. The less large files, the more I can keep my bandwidth drain lower.

The Hub will be redesigned. I want to make it work harder for users and I need to organise how it lists members better. I think there are now too many members to just have one big list. It needs a bit of categorisation.

Autism amongst the Amish

22 Apr

Don’t Stand So Close To Me

I recently had an email conversation with someone who is married to a lapsed Mennonite and who’s secretary is a lapsed Amish. As this was too good an opportunity to miss I asked xyr about autism amongst the Amish and vaccinations.

I was interested in Dan Olmsted’s idea that he and his sources waltz around Amish communities, grabbing people and asking ‘got any autism in the family’? and calling this reporting. When we talked about this xyr answer was fascinating:

As for tracking autistics, forget about it. Families are not likely going to seek diagnosis unless there are seizures or some other acute issue. Imagine driving up to a bunch of Amish farms and asking, “Are any of your kids autistic?” I would guess they probably haven’t ever heard of the word.

As xe explains it, the Amish are deeply religious people. Xe has first hand experience of this and explained to me how it would be virtually impossible given these beliefs and on such a short aquaintance for Olmsted – or his sources -to get ‘close’ to the Amish as a population:

The entire Amish religion is based on shunning the outside, secular world, these are the biblical tenants they live by:

Be not unequally yoked with unbelievers. (II Corinthians 6:14)

Come out from among them and be ye separate, saith the Lord. (II Corinthians 6:17)

And be ye not conformed to this world, but be ye transformed by the renewing of your mind that ye may prove what is that good, and acceptable, and perfect, will of God. (Romans 12:2)

The Amish only make accommodations when necessary. So, they have a phone in the barn to call the vet and the dairy plant. They accept rides in automobiles and trucks but don’t drive. They may shop for essentials but they aren’t going to chat you up.

And as I said before, I doubt seriously that they would seek a diagnosis for autism unless there was some acute comorbidity like seizures. They would likely know that their child was different but that was god’s will.

and as for vaccination:

The Amish are not anti-vaccine. Some Amish kids go to public school and must be vaccinated. My brother-in-law was raised Amish until about age 10 and he’s got the small pox scar to prove the point.

The basic gist is that the Amish are leery of non-Amish/Mennonite (whom they refer to as ‘the English’ (!!) apparently) but if a matter is medical and may cause threats to health than they are not stupid and seek out Western medicine.

Based on this, I really have doubts that Olmsted ever did more than stablish himself as a ‘nosey English’. I really have trouble believing that such a reserved, separate people would open up to either him or his water cooler salesman source about their personal, private medical matters.

No Autism Amongst The Amish

Its a long standing (and oft repeated) belief amongst the autism/antivaccine believers that there is no autism, or vastly reduced incidence of autism, amongst the Amish. This belief is repeated by all and sundry:

…thousands of Amish, almost all of whom do not vaccinate their children and do not seem to suffer much autism.

Dan Olmsted.

This finding of no significant level of “autism”….has also been observed in the unvaccinated children of the Amish

Dr Paul King, CoMed, closed access Yahoo List.

….the Amish community who do not participate in Western medicine, including the practice of vaccinations, have demonstrated their rates of autism are substantially lower.

Lisa Ackerman, TACA (Talk about Curing Autism) Executive Director, closed access Yahoo List.

Why has there never been autism in the Amish community? They dont vaccinate!

Poster ‘Jan’ to closed access Yahoo List.

I challenge anyone to go into any Amish community in this country and find autistic children. You won’t find them. Yet, our schools are being over run with autistic children. Why? The Amish do not vaccinate.

Poster ‘Paul Troutt’ to closed access Yahoo List

HE [friend of the poster] HAS NEVER SEEN AN AUTISTIC AMISH CHILD OR ADULT…. Why? THE[y] DO NOT IMMUNIZE….EVER.

Poster ‘Amethyst Mueller’ to closed access Yahoo List.

And so it seems clear right? All these people are saying the same thing. We could go into any Amish community and find very, very low or zero autism. And to what do these people attribute the non-existent autism? Vaccines (or the lack thereof) of course!

What would happen if we removed one of these factors from the equation?

The Old-Order Amish have low rates of vaccination and are at increased risk for vaccine-preventable diseases. A written survey was mailed to all Amish households in the largest Amish community in Illinois inquiring about their vaccination status and
that of their children.

Source.

Well, well. How very interesting. Finally some _science_ , as oppose to journalism, that examines whether the oft-reported belief that the Amish don’t vaccinate is true. What did these guys find?

Responses were received by 225 (60%) of the 374 Amish households in the community with children aged <15 years. An additional 120 responses were received by households without children. A total of 189 (84%) households with children reported
that all of their children had received vaccinations; 28 (12%) reported that some of their children had received vaccinations; and
8 (4%) reported that none of their children had received vaccinations.

84% of Amish households reported all their kids had received vaccinations. Only 4% reported that none of their kids had received vaccinations.

Among all respondents who knew their own vaccination status, 281/313 (90%) reported that they had received vaccinations
as children

Wow. Amazing how the two to three ‘toxic train wrecks’ from amongst these adults could not only have been missed (vaccine induced autism being unmissable as we all know) but also managed to fill in a survey.

So – we can say that the assumption that the Amish do not vaccinate is in severe doubt. When 90% of Amish adults in a survey state they received vaccinations and when 84% state all their kids have been vaccinated to what do we attribute the fact that according to Dan Olmsted, Dr Paul King, Lisa Ackerman and various posters on Yahoo groups there is little to no autism amongst the Amish?

A little Autism Hub catchup

19 Apr

Thanks to some generous donations I’ve been able to extend the life of the current scripts a bit longer and feel more confident about adding in more members.

To that end, I’d like to welcome you to our latest ‘batch’ of members:

Big White Hat keeps a blog where the good guys where white hats. He has an autistic son and often discusses autism on his blog.

Asperger Square 8 is a site run by Bev where she discusses her life as an Asperger’s adult.

And last, but by no means least, is One Dad’s Opinion – a very new blog started by regular LB/RB commenter and all round good guy Steve D who you might know better as Friend in California.

Welcome all – good to have you aboard! If Hub readers would like to welcome them either here or – even better – on their own blogs I’m sure they’d very much appreciate that.

Oh yeah, if you’re wondering why I’m announcing this here rather than on the Hub site as I usually do, its because the list time I tinkered with the scripts I managed to delete the whole WordPress database. Good going eh? And did I have a backup? No. Truly I am the techno-wizard. Not.

Update

The Bain blog is now authored by Alex. Check it out.

Easter bank holiday

10 Apr
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