Many UK stories about record rates of measles; here's the BBC http://news.bbc.co.uk/2/hi/health/7872541.stm , which includes the information that "most of the cases had been in children not fully vaccinated with combined MMR and so could have been prevented." Of course autism is mentioned. There's a graph of number of measles cases in the UK from 1996-2008, and some very strong statements. Here's a few:

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

Dr Peter Strebel, an immunisation expert at the WHO, stressed that even in countries with good health services, measles could be very serious.

"Parents and doctors need to be reminded that measles is a highly contagious disease," he said.

"Even healthy and well-nourished children, if unvaccinated, are at risk of measles and its complications such as pneumonia, encephalitis and, although rare, death."

Professor David Salisbury, director of immunisation at the Department of Health, said it was "irresponsible" for parents not to have their children vaccinated.

He said: "I think it's irrational, I think it's putting children's lives at risk. I can see no shred of benefit.

"There is no evidence that having vaccines separately is better. There are good reasons why it's worse."

Professor Steve Field, chairman of the Royal College of GPs, said confidence in the MMR vaccine was returning but it was vital that parents made sure all their children had received both doses.

"Measles is a sinister and nasty illness and shouldn't be taken lightly."

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

Unbelieveable! Thanks jypsy, for bringing that *%!?* to my attention. I have responded. And thanks to the influence of you good people I managed not to tell that blogger where to put his keyboard. Must put my little Sam to bed now. ..

re /m8866
At last the British medical authorities have got the media highlighting the down side of measles! It has been very slow coming, most people have had no idea of how damaging it can be. We're finally getting a rash of these stories, which just may get a lot more parents thinking it could be worth protecting their children from something much worse than autism.

Edited by author 02-07-2009 04:19 AM
re /m8862 (and others)
Yes we did discuss Gail G a while back. I am conflicted on this. I met Gail at a couple of the small friendly Durham conferences. Those Shattock organised conferences may not have had the highest quality science, but they were deliberately designed to provide a forum for 'early idea testing' and were impressively motivated by an evident desire to at least start a process of understanding autism better. They were not impersonal industry-driven career-building fests like so many. They were where I heard Paul Shattock telling us after Nobody Nowhere came out that Yes! Donna Williams, so articulate at a typewriter, really was clearly autistic. They were where I first heard autistic speakers.

Durham is also where I first heard, again from Paul, about the bad side of the sort of drugs that were and alas still are typically prescribed for autistics (www.apana.org.uk). It's where I first heard, from US psychologist Carol Vasquez, about the notable number of interesting exceptions to the statistical findings that facilitated communications often come from the facilitator. It's where I watched an ABA presentation of a seven year-old having jam thrust in her mouth whenever she touched a doll in which she had no interest whatever - with an audience reacting in unanimous revulsion.

To get back to Gail, Durham was also where I first heard about sensory issues in autism, and Gail was the person who had done the most observing and was making a huge effort to convey to the typical population that the autistics among them were not stupid but were struggling with a lot of atypical sensory and perceptual experiences which got in the way of other things. She also would explain to autistic people in care homes that they were autistic and that it meant they were experiencing the world differently from how other people do. My hidden hoard antennae vibrated when with her...

In fact, now I'm seeing all that written down I have to go to my Facebook page and accept Gail's invitation to be a "Facebook friend", even though she never replied to my explanation of my hesitancy because of the bad science. The fact is, I don't care quite so much about bad science as Michelle does; and I do care a lot about good will. I think one of the key things good science is for is re-channelling good will that goes astray; and I think it was wrong of me to let this issue get in the way of reciprocating a friendly gesture. But, as usual, Michelle is quite right about the bad science.

Edited by author 02-07-2009 12:32 PM
As Dinah knows, I totally disagree with her re most of /m8869 . I disagree, for example, that bad science and bad ethics (because that describes Ms Gillingham and Mr Shattock--see the increase in measles cases--just as well) are benign.

The very non-benign consequences of bad science are why Ben Goldacre's (him again!) writing, while hugely entertaining, is also so serious. The very non-benign consequences of bad or absent ethics are not any less serious.

Let's say we do what Dinah wants. Then we have to accept that autistics don't deserve the protection and benefit of recognized standards of science and ethics.

We have to accept, for example, that secretin is effective, because some very poor quality data show that it is (never mind the avalanche of good quality evidence that shows it is useless). I could create a long list of other approaches to autism supported by very poor quality evidence; in fact, I can't think of any marketed approach to autism that doesn't come complete with (1) lovely statements of good will emitted by people who many view as being very nice, and (2) claims to be right and important and effective.

In my view, good will is reflected in how people act. Imposing low or no standards of science and ethics on autistics, and promoting this as what we deserve, is not good will. It is the opposite, no matter who does it. This is how autistics have been and continue to be harmed, something I can say from my own experience.

At least in the case of Bill Nelson's Electro Physiological Feedback Xrroid it seems, in Canada anyway, non-autistics are being treated to the same bad science and ethics as autistics. The US however has stepped in to protect their citizens.

re /m8870
Yes indeed I did know I was sticking my neck out and Michelle would disagree with what I said. However I did not expect to be informed that if people "do what Dinah wants. Then we have to accept that autistics don't deserve the protection and benefit of recognized standards of science and ethics."

 I am not aware of having expressed any wants in that message, unless: "I think one of the key things good science is for is re-channelling good will that goes astray" counts as expressing a want. In which case I fail to see how it has those consequences.

 It seemed to me fair to share my reasons for not condemning those people out of hand, despite their evident lapses, the results of which I of course deplore.

Edited by author 02-07-2009 05:13 PM
In response to Dinah, it's not about "condemning people" (in or out of hand...). It's about noticing that public statements and actions, by individuals and organizations, have consequences for other people.

I've linked to this before and here it is again http://ballastexistenz.autistics.org/?p=411

Anyone or any organization can do bad things or can seriously screw up, self included. I don't think any adult or organization should be above scrutiny or criticism, when he or she or they are out in public saying and doing things that have consequences for other people.

Also, there's a difference between political/ideological (for us or against us; pro-this, anti-that; pro-this-person, anti-that-person) and scientific/ethical (is it more rather than less accurate? is it more harmful than beneficial?) ways of making decisions.

And I did assume, maybe falsely, that when Dinah reported her decisions and the reasoning behind them, she was expressing what she wanted to do. I was responding to the priorities this represented and what consequences this might have if decisions were generally made this way.

Michelle, did you know that Ben Goldacre, who has been mostly very decent in his adherence to high standards (apart from a notable lapse that discussing the ethics of prenatal screening was "scumbaggy") is being hounded by lawyers again. He posted on his blog, a long exert from a talk radio show in which the host spouted probably every crank vaccine theory going and obviously mentioned autism. Now the radio station are after him for breaching copyright even though he took the mp3 off his blog.

It's no way to engage in discussion.

Also, it looks like the monster Dan TV ads have been stopped a week early. We still have to get rid off the print ads etc, but it's a start. There may be more to report on this on Monday.

Edited by author 02-07-2009 06:05 PM
In response to Sharon, I posted a short bit about the latest adventures of Ben Goldacre (him again!) here /m8864 . You can follow the ensuing ruckus both here http://www.badscience.net/2009/02/legal-ch...mmr-scaremongering/ (this has been added to, since last I posted it) and here http://holfordwatch.info/2009/02/05/jeni-b...-radio-mmr-vaccine/ Yes, there is a Facebook group...

For the latest on the campaign by "Action for Children" to spread fear and dread of autism (as a way to promote themselves), see Sharon's blog http://thefamilyvoyage.blogspot.com/2009/0...lish-odious-ad.html

While I'm here, hot off the press... short http://www.timesonline.co.uk/tol/life_and_.../article5683671.ece and long http://www.timesonline.co.uk/tol/life_and_.../article5683643.ece UK Times stories about Dr Wakefield, the MMR, and the Lancet paper.

According to the long story, the 12 children who appeared in that Lancet paper are now "mostly teenagers. At least three are bloggers, two in support of Wakefield, while others have limited skills."

Just a very quick update on Sammy. The pediatrician (who I am not mad about) recommended the most local Autism Centre for Sam's assessment. The Speech Therapist (who I do like) was not impressed with that Centre and suggested an alternative Dr. who is a good bit further away, but who has published books on Autism and (in keeping with Ms. Dawson's cautious advice) is working from a large University setting. We rang both. The local place said they could give us an appointment in 6 months, though they might be able to do better if the pediatrician rang to schedule it (?!). The Dr. recommended by the ST, alternatively, allowed his nurse to give us his private (home) phone number. We left a message there, and he returned our call ON A SUNDAY, which I thought showed a nice committment. He gave us an appointment for 4th March. We're going with him. He also speaks some English, which will be helpful to me. I am looking forward to the diagnostic process, as I still have many doubts as to whether or not Sam is even autistic, since his traits fall almost exclusively into the communication category, or so I think. It seems difficult at best to assess the social character of a 2 year old.

I'll just have a "palm-face" moment here for not reading the last few posts before trying to post on what's already been mentioned! /m8875

I read the Times article (/m8876) this morning and am actually surprised at the depth of that man's deception. He is not and never was, a scientist.

Greetings all. Well, I've been getting quite an education, as anyone who has been following the exchanges on a blog written by someone going by "MJ" (whose profile unhelpfully provides zero information about who they are or in what way they are qualified to be "making sense of the nonsense in the world of autism", as their blog's subtitle claims) already knows. I have learned, for example, that every word I write is being monitored by people who really have issues with the concept of anyone opting out of ABA. I have learned that I am not good at remaining civil in exchanges on blogs that I consider to be ignorant. So I think I'll stick around here more if that's OK, because it is, after all, information I am after, not argument. Debate I am comfortable with, but only if positions are backed by specific examples and evidence.

I do have a few questions for you, Ms. Dawson, about what your research has revealed to you in the area of autistic learning. Following are a couple of quotes from you in the comments section on your blog entry "Notes on self-injury" from December 3, 2006:

"One thing no one has been very interested in the science is what kinds of information and materials young autistic kids have access to.

That's even though there are loud hints that access to information and materials plays a dramatic role in the development, well-being, and outcomes of autistics (Miller, 1989).

(. . . )

I also think that when autistic children are successful in receiving the kinds of information they need, they also become more successful in other kinds of communication. The goal of parent-training programs that teach how to respond to autistic children is to get parents to be less directive ("controlling and intrusive"), and more responsive."

1. Can you go into more specific detail about what you mean when you talk about "information and materials"?

2. Are you aware of any online parent-training programs (I tried to follow a link from the USA Today article on Dr. Gernsbacher, but it's pretty old and no longer valid), or any books on this subject?

3. You cite "Miller, 1989". Is that relevant and worth a read? Is it publicly available?

Thanks as always for your assistance.

One last note on blogs I think are useless. I accidentally found myself on Harold Doherty's blog (Yuck), but realized there that although I may not like the blogger, I may still learn something from the comments made by others. There was a comment there from a "free range aspie" whose name I can't recall at the moment (this was also quite an old post) and he had some wonderful suggestions about how one can change one's perspective on a behaviour and accomodate what may at first be seen as "self-injurous". His example involved Harold's repeated remarks about the danger a child was in if they couldn't see the dangers in broken glass (the way he kept phrasing it, I had visions of this poor child ramming his hand through plate glass because he hadn't the sense to see it was dangerous). All very alarming. But then this other guy remarked that he has fond memories of being transfixed by the beauty of shards of broken glass, and spent much time holding them up to the light and so forth without any injuries. He then went on to suggest some simple precautions/alternatives (good gloves, making a sun-catcher with the child) that were simple and obvious, but just helped remind me how I should (with both my kids) continue to try to figure out ways to accomodate and encourage their interests regardless of how odd (or even dangerous) they may at first seem to be. So some good can come of bad blogs. My education continues. . .

Sorry, one more question on a completely different subject. I have several friends in Ireland who are anti-vaccine, in spite of my efforts to educate them about Wakefield. Some have chosen not to vaccinate their kids, and at least one has opted for "Homeopathic vaccination" (i.e. no vaccination). Had a hard time not looking judgemental on that one. As I said before, this is one of my weaknesses. The mumps is making a comeback there now; I have 2 adult friends who had it recently (don't know why they weren't vaccinated years ago. . .).

I have always wondered, is there not a study that shows similar rates of autism in both vaccinated and un-vaccinated children? Or is it too difficult to find children from each group who are otherwise similar? Doesn't seem like that would be a problem these days. . . .

Just to be accurate (sorry to be such a stickler for accuracy) it says "Making sense of the nonsense in the word of autism" not "world" of autism.