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Dear Mercury and MMR Militia

21 Jun

I want to write you all an open letter to offer you my opinion as to where you are going wrong. Before I do, I fully realise that this is a massive generalisation and that some of you won’t hold all the opinions I’m about to go through. I think though, that many of you do.

Three things prompted this open letter. First of all was David Kirby’s trip to the UK. Second was a comment from Kelli Ann Davies where she expressed surprise that some of us might know/guess/whatever the intentions of the science and medical community. Third was Ginger Taylor’s recent sulk about the AAP. I’ll touch on these things as I go through this.

You have a truly massive credibility issue which grows with every passing year. Once upon a time it was an issue with the science/medical community but now it is an issue with the general public. There are a number of reasons why this is so.

1) You cannot keep your story straight. You have (as I said to Kelli Anne) some first class marketing and PR people. As I recall, Lynn Redwood, Mark Blaxill and Sallie Bernard all have marketing qualifications. You also have numerous leading lights who are very, very rich. This means you have ample opportunity to lever your message into the heart of the US media system.

But that means nothing without a coherent story to sell. You don’t have one. I understand that you have recently talked about how the ‘story of vaccines’ has _evolved_ . That is stretching things more than a little. Its mercury, no its MMR, no its both, no its Aluminium, no its all three, no its all ingredients, no its the very vaccines themselves, no its the schedule they’re given. No – its ALL the above. And don’t forget the mitochondria!

The more ingredients you add to the pot, the more you have to explain why they are causative of autism. You didn’t even manage to do this when you were concentrating on just _one_ thing (thiomersal). The above is not an example of an evolving hypothesis. Its an example of an ever widening hypothesis as one after another, your original ideas have been taken down.

Nowhere is this better illustrated than David Kirby’s stumbling backwards and backwards:

In 2005, David said in a FAIR Autism Media interview:

It’s now 2005…..[W]e should see fewer cases entering the system [cdds] this year than we did last year.

When that didn’t happen he then said:

if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis…..total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

That didn’t happen either.

You started off by pointing an air pistol at a target 20 feet away and missing. You worked your way through Magnums, Shotguns and Miniguns and kept missing. You currently have a canon wheeled right up to within a foot of the target and you’re _still_ missing.

2) Your science is weak and getting weaker. Sadly for you, the onus was (and still is) on you to provide evidence that vaccines in any of the myriad of hypotheses cause autism. Lets hypothetically agree with you that vaccines are in fact, fashioned by Satan and are in fact, tools of population control. That is not the point. The point is: _do they cause autism?_

There is not one paper that passes muster as valid science that offers corroborating evidence that any vaccine, any ingredient of vaccines or any schedule they are administered in causes autism. This is after over 10 years of trying to find one. What you are increasingly left with is a double conspiracy theory. In one barrel of the conspiracy theory, brave maverick doctors are having their research suppressed. In the other barrel of the conspiracy theory, Big Pharma shills are publishing science to refute the various vaccine hypotheses.

Of course, neither barrel is true. The brave maverick docs are not having their science suppressed. It is simply not good enough to pass peer review.

A good example of this is the science experts being presented at the Omnibus Autism proceedings. No Geier’s. No Jim Adams. No Boyd Haley. No Andrew Wakefield. At least, not so far anyway. And this is in the Vaccine Court, where standards of evidence are way lower than in a civil court, where – by the way – not a few of these same researchers science was not good enough to even be entered as evidence.

And you have this nasty habit of shooting yourselves in the foot. Only today David Kirby posted on the Huffington Post about how rubbish the VSD database was. The very same database the Geier’s recently used to allege a link between vaccines and neurodevelopmental disorders.

And the list goes on. The Hornig study? Refuted by Rick Rollens MIND Institute. The Nataf paper on Porphyrins? Liz Mumper, head of DAN! medical admits that even ‘normal’ children have raised Porphyrin levels. The Bernard et al paper? Refuted. Richard Deth’s work? Exposed and questioned.

3) Your choice of media people to represent you is doing you harm. I am not sure how the idea of latching onto Jenny McCarthy as a spokesperson for the anti-vaccine/autism connection came up. There are a few other celebs I can think of with more gravitas than McCarthy. In truth, you couldn’t have chosen worse. Already, she has made a public fool of herself (and you). As has her partner, Jim Carrey, with his ‘lazy ass’ FUBAR and calls to notice ‘warnings from the universe‘.

I understand that these events feel terribly cathartic to you but I would urge you to take off your rose tinted glasses and see how the real world perceives these kind of things. Its not good. Don’t take my word for it, go to a _mainstream_ news source, discount the people you know as friends/associates who are leaving comments and then see what people think.

You have also latched onto the words of Bernadine Healy. I can see why but she (is/was) a member of a paid lobby group that advances the ‘science’ of Philip Morris to put forward the idea passive smoking isn’t dangerous. How desperate do you have to be to turn to _this_ ‘authority’ for backup?

4) You cannot see that you are being humoured. I know that some of you have been very proud of your success in getting involved with things like the IACC and y’know, thats great – well done to you. And then there’s the ‘coup’ of getting the AAP to attend a DAN! conference and ‘work with’ them. But there’s one thing you seem to have forgotten. AAP members are medical scientists. They will go with the decent science.

I read a blog post from Ginger Taylor today which seemed to be telling the AAP their ‘window of opportunity’ to work with DAN! et al had closed due to the fact they endorsed a letter that a paediatrician had written on how to tackle parents who were nervous about vaccination.

Amusingly, Taylor also chided the AAP for not turning up to the ‘green our vaccines’ rally:

I warned that the window would only be open for a short time unless we saw real action, and would probably close around the time of the Green our Vaccines Rally if they didn’t show up for us in some respect.

Well the AAP didn’t show up for the rally and well… this certainly signals that the window is closed. They want it closed. And it looks like they may be locking it.

Can you not understand that to expect the AAP will turn up for a rally which touts such anti-science as Aluminium and Formaldehyde being at singularly dangerous levels in vaccines and Anti-Freeze being in them at all is the height of arrogant stupidity? Surely you cannot be that naive?

The truth is – and I get this from speaking to AAP, NIH, FDA and NHS members – that you had, and always will have, an opportunity to impress them with decent, peer reviewed science. That’s all you’ve ever needed. And that’s what you’ve never had.

5) The future. The person you’ve decided will be your public face is writing another book. <a href="http://stopthinkautism.blogspot.com/2008/06/today-autism-recovery-tomorrow-crystals.html"She says that:

It’s really an Indigo book…….We’re definitely the Indigos, you know, breaking down these walls so this, you know, New Earth behind us can happen.

And what’s your role in this?

…But people aren’t quite there yet and I kinda had to, not lower my vibration, change my vibration to focusing on the world hearing that message. Hearing that biomedical treatment does help these kids.

And then, slowly, you know I can put it in my speeches. and then in my last book I talked about the indigos and crystals. And I’m just like, I’m really following source, kind of I felt the need to do that, I’m just kind of dribbling it here and there until people, you know, have that spiritual awakening of spirituality.”

That’s where you’re going. You’re close to abandoning any kind of rational basis for your beliefs and just becoming Jenny’s followers in an Indigo Spiritual Awakening to herald in the New Earth..

The Irrelevant Objection Fallacy – I’m Insulted!

21 Jun

In some cases, the irrelevant objection fallacy can also bee seen as the, “shoot the messenger” fallacy, or in this case, maybe even, “shoot the straw messenger”.

Over at Age Of Autism, Ginger Taylor writes:

The American Academy of Pediatrics now recommends that pediatricians tell parents who don’t vaccinate their children that they:

Are “Selfish”
Are “Self-Centered”
Are “Complacent or Lazy”
Are often “Emotional” decision makers
Have “Unacceptable attitudes”

But they do not believe that insulting you like this is in any way coercing you to vaccinate your child.

Does the American Academy of Pediatrics really recommend that? Ginger’s assertion is based on is a sample letter from a private pediatric practice (All Star Pediatrics). The sample letter does in fact clearly communicate this practice’s position and opinions about the importance of vaccination and probably does serve a healthy portion of a ‘not-so-pretty look in the mirror’ at attitudes surrounding vaccination refusal. Yes, this sample letter is available on the AAP website, but, is it really a “recommendation” from the AAP?

This sample document was created by All Star Pediatrics. It is provided only as a reference for practices developing their own materials and may be adapted to local needs. This document does not represent official American Academy of Pediatrics (AAP) policy or guidelines and the AAP is not responsible for its use. You should consult an attorney who is knowledgeable about the laws of the jurisdiction in which you practice before creating or using any legal documents.

If the sample letter from All Star Pediatrics is not official policy or guidelines, what is?

This maybe? (from the AAP Policy website).

What is the pediatrician to do when faced with a parent who refuses immunization for his or her child? First and most important, the pediatrician should listen carefully and respectfully to the parent’s concerns, recognizing that some parents may not use the same decision criteria as the physician and may weigh evidence very differently than the physician does.21 Vaccines are very safe, but they are not risk free; nor are they 100% effective.22 This poses a dilemma for many parents and should not be minimized. The pediatrician should share honestly what is and is not known about the risks and benefits of the vaccine in question, attempt to understand the parent’s concerns about immunization, and attempt to correct any misperceptions and misinformation.23–25 Pediatricians should also assist parents in understanding that the risks of any vaccine should not be considered in isolation but in comparison to the risks of remaining unimmunized. For example, although the risk of encephalopathy related to the measles vaccine is 1 in 1 million, the risk of encephalopathy from measles illness is 1000 times greater.22 Parents can also be referred to one of several reputable and data-based Web sites for additional information on specific immunizations and the diseases they prevent (see pages 52 and 53 of the Red Book25 for a list of Internet resources related to immunization).

Many parents have concerns related to 1 or 2 specific vaccines. A useful strategy in working with families who refuse immunization is to discuss each vaccine separately. The benefits and risks of vaccines differ, and a parent who is reluctant to accept the administration of 1 vaccine may be willing to allow others.

Parents also may have concerns about administering multiple vaccines to a child in a single visit. In some cases, taking steps to reduce the pain of injection, such as those suggested in the Red Book,26 may be sufficient. In other cases, a parent may be willing to permit a schedule of immunization that does not require multiple injections at a single visit.

Physicians should also explore the possibility that cost is a reason for refusing immunization. For a parent whose child does not have adequate preventive care insurance coverage, even the administrative costs and copayments associated with immunization can pose substantial barriers. In such cases, the physician should work with the family to help them obtain appropriate immunizations for the child.

For all cases in which parents refuse vaccine administration, pediatricians should take advantage of their ongoing relationship with the family and revisit the immunization discussion on each subsequent visit. As respect, communication, and information build over time in a professional relationship, parents may be willing to reconsider previous vaccine refusals.

Continued refusal after adequate discussion should be respected unless the child is put at significant risk of serious harm (as, for example, might be the case during an epidemic). Only then should state agencies be involved to override parental discretion on the basis of medical neglect. Physician concerns about liability should be addressed by good documentation of the discussion of the benefits of immunization and the risks associated with remaining unimmunized. Physicians also may wish to consider having the parents sign a refusal waiver (a sample refusal-to-immunize waiver can be found at http://www.cispimmunize.org/pro/pdf/RefusaltoVaccinate_2pageform.pdf). In general, pediatricians should avoid discharging patients from their practices solely because a parent refuses to immunize his or her child. However, when a substantial level of distrust develops, significant differences in the philosophy of care emerge, or poor quality of communication persists, the pediatrician may encourage the family to find another physician or practice. Although pediatricians have the option of terminating the physician-patient relationship, they cannot do so without giving sufficient advance notice to the patient or custodial parent or legal guardian to permit another health care professional to be secured.27 Such decisions should be unusual and generally made only after attempts have been made to work with the family. Families with doubts about immunization should still have access to good medical care, and maintaining the relationship in the face of disagreement conveys respect and at the same time allows the child access to medical care. Furthermore, a continuing relationship allows additional opportunity to discuss the issue of immunization over time.

I read the sample letter from All Star Pediatrics, and in my opinion, it follows the Clinical Practice paper on the AAP Policy website pretty closely. I encourage everyone to read it in its entirety before commenting.

Let’s take a look at what the sample letter from that pediatric practice states, that apparently “insulted” Ginger:

Re: “Selfish,” “Self-Centered,” and “Unacceptable”

Furthermore, by not vaccinating your child you are taking selfish advantage of thousands of others who do vaccinate their children, which decreases the likelihood that your child will contract one of these diseases. We feel such an attitude to be self-centered and unacceptable.

Ouch. Unguided by sound science or logic and reason, parents who refuse to vaccinate probably rely heavily on beliefs and things like communal reinforcement to internally justify their decisions. Having one’s beliefs challenged in an ethical context (social responsibility), but based on science (herd immunity) could be quite uncomfortable for some. Is it easier for someone to acknowledge a potential lack of social responsibility, or is it perhaps easier to cry, “I’m offended!”?

Re: “Complacent” and “Lazy”

The vaccine campaign is truly a victim of its own success. It is precisely because vaccines are so effective at preventing illness that we are even discussing whether or not they should be given. Because of vaccines, many of you have never seen a child with polio, tetanus, whooping cough, bacterial meningitis or even chickenpox, or known a friend or family member whose child died of one of these diseases. Such success can make us complacent or even lazy about vaccinating. But such an attitude, if it becomes widespread, can only lead to tragic results.

Hmmm. This looks more like a reasonable concern, and it’s expressed as a possibility.

Re: “Emotional”

We recognize that the choice may be a very emotional one for some parents.

Not too inflammatory in my opinion, but perhaps that’s just me.

At any rate, here’s the bottom line – this sample letter from All Star Pediatrics (which is not in and of itself an AAP policy or guideline), clearly communicates the position and professional opinions of All Star Pediatrics. In my opinion, this practice’s outlined policies seem mostly in-line with the Clinical Practice paper on the AAP Policy website. How it oulines those policies is direct, and very possibly quite uncomfortable for those who would refuse vaccinations. Objecting to that direct and potentially ‘uncomfortable for some’ tone, is irrelevant to the importance of preventing childhood disease.

What does any of this have to do with autism? Well, nothing really, but don’t shoot the messenger.

Nigerian Neurodiversity

17 Jun

Its refreshing to realise sometimes that there is a world ‘out there’ beyond the West and that they are living with autism too. And whats more, they aren’t considering it soulless, or sucking the marrow out of families, or organising pointless marches for people to exercise their right to blame others, or forming organisations that concentrate on blaming vaccines, or claiming that denying autism was anything except mercury poisoning in the past and now claiming its the vaccine schedule is just the evolution of a hypothesis, or making a tidy profit of the ignorance of parents.

No, what they’re doing is ‘serving humanity’:

Mr. Babatunde Willouhby,a masters degree holder, left his lucrative job to serve humanity by taking care of autistic and children with Down syndrome, amongst others. He is an administrator in an autistic school, named Hope House School, here in Abuja. While chatting with him recently in his office, I saw in him a man with passion for dealing and caring for a special group of children with slightly different behavioral pattern from those who the society will tag ‘normal children’.

and

Mr Ayiem……said the value he attach to the welfare of his son does not make him see the money spent as expensive, but an investment which is worth giving any individual with confidence that, though it will take time, his son will be independent some day.

and most of all

….socially people see it as a stigma, but I don’t. I have had occasions where I go out with her to supermarket, church and social gathering and you notice people looking at you in a particular way, but I don’t care because she is my daughter. I give her all my love and I display it publicly. I want her to know that she is one of the must loved children in the world.

………..

autistic children and children with Down syndrome can contribute significantly to the society ,if only they are accepted. When we are at home for instance, we help her with her school work by showing her what to do and what behaviour is proper. Of course, like any other child she may go off the track but we help her to do the right things.

……….

If you play any song on radio or on CD and ask who sang it, whether American or Nigerian, she will tell you the name of the artiste. How she knows the name of the artiste and their songs, I don’t know. So if she wants to take that line, I will encourage her all the way. Wendy to me, is one in a million and for me she is a normal child.” From this discussion with Mr Ojugbuna I saw the picture of a father who believes in his child and that was reflected in the behavior of Wendy.

Nigeria is classed as a developing nation (what used to be called ‘third world’). I’d say that in my opinion it has developed a whole hell of a lot further and faster than some people I can think of over in this supposedly enlightened culture.

Competition Time

11 Jun

Icon Books sent me a review copy of the UK release of Unstrange Minds which is how I was able to review it so promptly.

However, this means I now have (count ’em) _three_ copies of Unstrange Minds – the galley Professor Grinker sent me, the US edition (never read it) and the UK edition.

Now I don’t need three copies so I’m going to give away the US edition (which is also personally signed by Professor Grinker – as evidenced by my pointing digit) to one lucky person (willing to post anywhere in the world).

grinker

So how to choose who to give it to?

Here’s a photo of the Green our Vaccines brightest lights. What I want you to do is caption it. The rules:

1) Nothing defamatory!
2) No swear words that begin with c or f
3) No reference to Evan McCarthy
4) Do as many as you like
5) Funny = good
6) No photoshopping the image
7) Post your entry either in the comment section of this post or in a separate post on your own blog and post the link to that here.

Go!

(click for bigger version).

Unstrange Minds – UK release

5 Jun

I wrote about Unstrange Minds in 2006 when it was first published in the US only.

Cover of Unstrange Minds

It gives me huge pleasure to note that Icon Books have now released the UK version (also available on Amazon UK.

I loved Unstrange Minds unreservedly. Professor Grinker sent me a galley copy to read before it was published and I read it in a couple of weeks worth of train journeys to and from my workplace. So absorbed was I that I very nearly missed my stop more than once.

Its a book about two things. Firstly it is a Fathers paen to his autistic daughter. The love and respect he has for his daughter permeates every single page. It is clear that he finds his daughter fascinating and wonderful. Through the pages, we do too.

Secondly, it is a book about the ‘autism epidemic’ or rather the lack thereof.

The shift in how we view autism….is part of a broader set of shifts taking place in society.

Grinker goes on to take the reader through the often fascinating history of autism as a diagnostic label (Kanner is pronounced ‘connor’ – who knew??) to illustrate his theory of the apparent rise in autism prevalence being intrinsically linked to these cultural changes such as the growth in child psychology as an area of practice, the decline of psychoanalysis, the rise of advocacy organisations, greater public awareness to educational needs and change in pubic policies:

Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools….which first started using the category of autism during the 1991 – 1992 school year are reporting it more often….Epidemiologists are also counting it better.

One of the most fascinating parts of the book for me was Grinker’s exploration of autism in non-Westernised cultures such as South Africa and Korea. In some ways it was like reading about how autism was viewed here 20 years ago.

When [Milal School] was being built in the mid-1990s, some of the wealthy residents of this quiet neighborhood south of the Kangnam River in Seoul picketed the site, cut the school’s phone lines, physically assaulted school administrators, and filed a lawsuit to halt construction, because they believed that the presence in the neighborhood of children with disabilities would lower property values. The school opened in 1997, but only with a compromise. It was required to alter its architecture so that the children were completely hidden from public view. Some of the protestors were brutally honest. They said they didn’t want their children to see or meet a child with autism.

That seems (and is) outrageous to us but 20 years ago I can easily imagine this happening in the West. One only has to look at the recent experiences of Alex Barton to see how quickly the West can regress to barbarism.

I can’t recommend this book highly enough. Go buy it now.

The Bernadine Healy Card

31 May

Last month, ex NIH leader, Bernadine Healy came out of her semi-retirement to weigh in on the autism/vaccine hypothesis:

….the rise of this disorder, which shows up before age 3, happens to coincide with the increased number and type of vaccine shots in the first few years of life. So as a trigger, vaccines carry a ring of both historical and biological plausibility.

It was a credulous article designed, I suspect, to have a bit of a snipe at HHS – currently embroiled in the Autism Omnibus. Why do I say that?

Well, being a UK citizen I’d never heard of Bernadine Healy so I did a bit of looking around to see if I could adequately explain to myself why such a luminary would say such plainly silly and unscientific things.

It seems that:

on 10 Feb [1993], Healy, who is known for her bluntness, went to her new boss, Health and Human Services (HHS) Secretary Donna Shalala and asked about her future. Shalala apparently matched Healy for bluntness. “She let me know it wouldn’t work out in the long term.” Said Healy.

So possibly there is some lingering resentment towards HHS. Who knows. It seems doubtful that this would entirely (if at all) explain Healy’s decision to parrot pseudo-science but – people do silly things sometimes.

What I found fascinating was that this is not the first time Healy has taken an active role in direct opposition to science and the scientific process:

…..patients are forced into a one-size-fits-all straitjacket…..EBM [evidence based medicine] carries its own ideological and political agenda separate from its clinical purpose.

Dr. Bernadine Healy, a senior writer for U.S. News & World Report and former director of the National Institutes of Health, falsely claimed that “several” neurologists who “evaluated” Terri Schiavo determined that she had “a functional mind” and was “minimally conscious.”

Dr Bernadine Healey, former director of the National Institute of Health said, “Blenderizing these diverse trials into one giant 232,606-patient-strong study to come up with a seductively simple proclamation is just silly….”

That latter was Healy’s attack on a study that highlighted the dangers of vitamins.

So we can see that Healy has a history that is peppered with leanings toward a credulous approach.

It also seems that she is first and foremost a politician, willing to sacrifice her scientific credibility to support her party (she is a Republican):

Healy was appointed director of the National Institutes of Health in 1991….when Healy assumed control, the agency was beset with problems…..[s]cientists were leaving in record numbers because of…..politicization of scientific agendas (a prime example was the ban on fetal-tissue research because the Republican administration believed it encouraged abortion)

Healy had, at that time expressed support for fetal-tissue research:

….she had been a member of a panel that advised continuation of fetal-tissue research, her appointment was also seen as a move away from politicized science.

So, it must’ve come as something of a shock to NIH scientists when:

….she lobbied against overturning the Bush Administration’s ban on fetal tissue research, despite her previous support for such research.

She also had to defend herself against charges of mishandling a scientific misconduct case:

Healy demanded that OSI (like internal affairs for the NIH) rewrite a draft report that found misconduct on the part of Popovic. The OSI report also severely criticized Gallo.

“When her order for a rewrite was refused, Dr. Healy replaced the chief investigator [Suzanne Hadley] with one more malleable,” the subcommittee report said. The resulting OSI report was “watered down,” the subcommittee document said.

……….

In 1992, the National Academy of Sciences’ panel completed its investigation and produced a report critical of Gallo.

Healy chose to ignore the findings of the NAS panel and commissioned her own ad hoc committee of top NIH scientists, whom she called her “wise men,” the report said. Healy required the members to sign a secrecy agreement.

(Full story also here).

Maybe the biggest question mark against Healy’s scientific credibility and ability to be impartial as this. She was a member of The Advancement of Sound Science Coalition:

The Advancement of Sound Science Center (TASSC), formerly the Advancement of Sound Science Coalition, is an industry-funded lobby group which promotes the idea that environmental science on issues including smoking, pesticides and global warming is “junk science”, which should be replaced by “sound science”.

Notably, TASSC promote the interests of tobacco companies:

Initially, the primary focus of TASSC was an attempt to discredit research on Environmental Tobacco Smoke [passive smoking] as a long-term cause of increased cancer and heart problem rates in the community — especially among office workers and children living with smoking parents. It subsequently advanced industry-friendly positions on a wide range of topics, including global warming, smoking, phthalates, and pesticides. Later still, they extended the role of TASSC to Europe using Dr George Carlo. TASSC used the label of ‘junk science’ to criticise work that was unfavorable to the interests of its backers.

TASSC’s funders included:

3M
Amoco
Chevron
Dow Chemical
Exxon
General Motors
Lawrence Livermore National Laboratory
Lorillard Tobacco
Louisiana Chemical Association
National Pest Control Association
Occidental Petroleum
Philip Morris
Procter & Gamble
Santa Fe Pacific Gold
W.R. Grace

More can be found here.

So, all in all, I am disposed to not trust the words, or ‘beliefs’ of Bernadine Healy very much. Anyone who campaigns against the dangers of passive smoking to children or who is prepared to block science they allegedly once supported when it is politically expedient doesn’t seem that good a judge of what constitutes good science.

Autism Conference and Autism Science

29 May

First of all, I want to let people know that the second USD Autism Conference involving Autism Hub members Has been announced.

There is a Facebook Event to allow the Autism Hub Facebook Group to disseminate information about the conference.

This is, once again, due to the tireless work of Steve. Thanks are due to him.

Secondly, an interesting piece of new science has been announced:

A Long Island researcher has pinpointed for the first time brain regions in children with autism linked to “ritualistic repetitive behavior,” the insatiable desire to rock back and forth for hours or tirelessly march in place.

…..

In children with autism, Shafritz found deficits in specific regions of the cerebral cortex, the outer layer of gray matter linked to all higher human functions, including repetitive behavior. He also mapped deficits in the basal ganglia, a region deep below the cerebral hemispheres.

So this would seem to be yet another area of autistic behaviour that has been ‘reclaimed’ from the anti-vaccine people who claim that the repetitive behaviours were a symptom of mercury poisoning. This is, of course, all to the good as it means that accuracy has replaced supposition.

Neurological diversity

28 May

It is a common tactic of some people who believe that autism should be cured at all costs to state that ‘the neurodiverse’ are a small minority of adults with Aspergers Syndrome, intent on preserving themselves at the expense of their ‘low functioning’ cousins.

Take a recent post from Harold Doherty railing against Andrew Solomon’s piece in New York Magazine:

The Alleged Autism Rights Movement isn’t much help for the severely autistic, the truly severely autistic….. like my son Conor who wondered (sic) across a busy main street oblivious to the dangers of traffic; or those like the 10 year old severely autistic boy in North Carolina who was struck by a train and killed Saturday half an hour after police received a report he was missing from his home. [Or] like the 50 year old autistic woman who could not communicate to tell the world she was being abused by staff in the residential care facility in which she lives in Long Island…

The sad fact is that, if Harold Doherty would allow himself to see it, no-one from ‘neurodiversity’ is suggesting that people like his son, the 10 year old boy he describes or the 50 year old woman he describes, should not be helped to the fullest possible extent. The trouble is, that Harold (and people who hold similar views) are so caught up in what they _think_ they never actually _see_ . The other fact is that the basic tenet of neurodiversity as _I_ understand the term is that people like Conor Doherty deserve respect. The whole ‘cure’ thing is a fairly trivial side issue. Respect is what comes first.

There is no cure for autism. Does this mean then, that we should not fight for the rights of autistic people of _all_ ages, abilities and expressions? That because they are not neurotypical they do not have rights? or deserve respect?

_That_ is what (to me and I think to very many people) neurodiversity is about. Take Alex Barton – the five year old voted out of his class. That is a _lack_ of respect. There is absolutely no justification for that teacher to behave in that way toward a five year old child. Neurodiversity says ‘this little autistic boy deserves to be treated as if he were the same as anyone else in terms of his right to belong’. I fear that some people who call themselves autism advocates think the problem is easily remedied by curing Alex Barton’s autism (hypothetically of course). I think that that entirely misses the point. People used to look for cures for homosexuality – that was wrong too. The _person who is autistic_ deserves as much of a chance to be judged for who they are with their own set of unique abilities, shortcomings and character as the person who is not.

Does this mean we should ‘leave the autistic child as he/she is’? Of course not! That is the largest of red herrings. If someone cannot communicate, you help them communicate. If someone cannot use the toilet, you help them to learn.

And then, when they have reached the upper limit of the potential for learning on each of these subjects, you accept that that is who they are. For some, that might mean they can now speak. For some it might mean they can barely use one Makaton sign. The _amount_ they have learnt is not the measure of how much respect they deserve. They deserve respect regardless. So we must all work to make the environment safer for young autistic children. We must all work harder to make autistic adults living arrangements safe. These are basic human rights.

It should also be noted that, far from being an autism related term, neurodiversity touches on a whole range of things. Of course, they’re not all called ‘neurodiversity’ but well….

Are voices a symptom of illness or a variety of human experience?

Research has shown that there are many people who hear voices, some of whom cope with their voices well without psychiatric intervention, it has also been found that there are many people who hear voices who can cope with their voices and regard them as a positive part of their lives. Neither is it the case that voices have always been regarded as a negative experience.

Throughout history and even today there are people who hear voices who find their voices inspirational and comforting. These are facts that on the face of it are hard to square with the extremely negative way that the experience is regarded by psychiatry. The researchers, practitioners and involved voice hearers believe it is mistaken to regard voice hearing as part of a psychopathic disease syndrome. Rather, they consider it to be more akin to a variation in human experience – if you like, a faculty or differentiation – something like homosexuality, that it is definitely not open to cure.

Thats taken from a page on Hearing Voices from the Mental Health Foundation. I would suggest that you go read that entire page. Like neurodiversity, some members of the hearing voices community acknowledge that their condition (or the condition of a loved one) can be disabling and distressing. However, they all realise that their can be a unique benefit and comfort in knowing who they are. They believe that who they are can be best expressed as a variation in human experience.

A little closer to home (for me anyway), there is something called Mad Pride which is a movement again neurodiversity in all but name. Its a loose conglomeration of self advocates who are (or have been) diagnosed with mental illness:

About 5.7 million Americans over 18 have bipolar disorder, which is classified as a mood disorder, according to the National Institute of Mental Health. Another 2.4 million have schizophrenia, which is considered a thought disorder. The small slice of this disparate population who have chosen to share their experiences with the public liken their efforts to those of the gay-rights and similar movements of a generation ago.

Just as gay-rights activists reclaimed the word queer as a badge of honor rather than a slur, these advocates proudly call themselves mad; they say their conditions do not preclude them from productive lives.

The people in all these movements are autistic, manic depressives, schizophrenics, tourettes and many more. None of us deny the bad things that being the way we are can bring. But we do not believe that the fact that we are the way we are means that we are second-class or fodder for nothing more than quack therapies and misplaced pity.

All these peoples – and many more – are the neurologically diverse. The Neurodiverse. Belonging to neither nation, nor politics but simply belonging to the simple idea that everyone is _not_ equal but everyone can advocate best for themselves if supported and respected:

“Broken down it means ‘speaking for yourself’, ‘communicating in other ways’, but it’s personal. For me it means that I can speak for myself. It means I’ve got a voice and even without a voice I can communicate in other ways. It means yes and no- most important- ‘No, I don’t want tea, I want coffee, I don’t want sugar’- all the things we take for granted. It means people must listen to me, I can take a risk, I can have a relationship, that can be hard. I can think for myself, I can go to the shop with support and if I need help, people can help me….

Jackie Downer, Down’s Syndrome Self Advocate.

New blog worth following

20 May

I don’t usually make recommendations about new blogs. Not because I’m above all that – course I’m not – but mostly because so many people have their set ideas about what makes a good blog and they don’t need me pushing my opinions on them.

But this is a little different. Its the first blog I’ve seen that concentrates on epidemiology and is written by someone who:

…has a Ph.D. in epidemiology from an Ivy League university. Before that I got a bachelor’s degree from a different Ivy League college, a master’s degree in developmental psychology, and a master’s degree in medical sociology from another Ivy League University. I worked for more than 30 years as an epidemiology professor in medical academia and schools of public health, and in the senior biomedical research service at the Centers for Disease for Disease Control and Prevention (CDC). During my career I have been the editor of two epidemiology journals and one more general biomedical journal.

Thats some pretty impressive credentials.

I wouldn’t (and I doubt Epi would either) claim that the blog is about autism or vaccines, or autism related science but the two posts I’ve read that have discussed autism have been clear, concise and easy for non-experts to parse.

So, I hope that Epi will continue to blog tangentially about autism from time to time as there are big issues surrounding autism epidemiology that we could all learn about. But more than that I plan on reading Epi’s blog on a regular basis in order to learn.

That’s not to say I expect to become an epidemiology expert simply by reading a blog! Of course not. But that doesn’t preclude me from being able to hopefully discern from an expert what is important in epidemiological studies and what is not.

I would _love_ to see Epi turn her attention to some of the Geier’s epidemiological studies for example. I think we all might learn a lot from a detailed critique of that particular body of work!

I’d also like to see Epi’s opinion on some of the epidemiological studies being utilised in the Autism Omnibus hearings. As we’ve all seen, the epidemiological basis on the autism/vaccine hypothesis seems to have undergone a substantive revision of late. I’d like to see a professionals take on it.

Best of all though? The name Epi Wonk. It reminds me of Wonko The Sane from ‘So Long and Thanks For All The Fish”. Anyone that sounds that much like a man who believes he’s living in a perpetual lunatic asylum can’t be all bad 😉

So – visit Epi Wonk, see what you think.

Thimerosal on trial- the incredible shrinking epidemic

13 May

The audio recordings of the first day of the thimerosal-only portion of the Autism Omnibus Proceedings hearings are now available here: ftp://autism.uscfc.uscourts.gov/autism/thimerosal.html. They are mp3 files.

Here’s some of what I heard yesterday via telephone and comments on what I think the parents’ lawyers seem to be implying now, maybe you will listen to the same discussion and take away different key points:

A lawyer for the petitioners (Mr. Williams, I think) said, as if a fact: there has been an autism epidemic, and he added that there is no such thing as a “genetic epidemic”.

They know this because no one could “miss” regressive autism in the past. I guess they might have missed other non-regressive autism and other ASDs.

The only kind of regressive autism they are interested in is the “clearly regressive” subtype, which they seem to be saying is about 2% or less of all ASD children born during the 1990s.

Apparently, they are only interested in the children of the “epidemic” era when kids got more thimerosal exposure.

There are so few of their target group that when these kids started to be “added” to the “epidemic” no one could see it happening, and likewise when the exposure to thimerosal dropped of precipitously, even though the numbers of these target group kids must have dropped off precipitously, no one could see that change in the larger epidemiological data.

So the epidemic might continue but it has nothing to do with thimerosal exposure now.

The numbers of “clearly regressive” autistics, however should be obviously diminishing. Because it’s a small group and not all of them “clearly regressed” following a vaccine containing thimerosal. These supposedly thimerosal-damaged clearly regressive kids must be disappearing by now, but maybe they’ve been replaced by kids who “clearly regress” due to another actionable agent. If they regress because of an non-actionable agent, like, say, oxygen or exposure prenatally to mom’s immune system, no one cares. Then logically, if all of the “clear regressing” autistics were caused to regress only by thimerosal, then there should be very few, or none, younger “clearly regressed” autistics in areas where thimerosal is not used for toddler age vaccines now and hasn’t been used in the past few years.

Apparently, they are claiming that thimeosal in vaccines only causes a subset of regressive autism, not including early-onset autism. So apparently there’s no way for a baby who got the birth dose of Hep B to be made autistic, since it can’t “clearly regress” shortly after birth. And if the baby only got the Hep B dose (if preserved by thimerosal), that alone couldn’t cause a regression months later. I think they are only interested in vaccines given right before a toddler regresses, at say age 12 months to 36 months.

Also, it seems that the PSC believes Eric Fombonne’s research is reliable when they want to make a point with it. They used his research to support the numbers of autistics who regress if I recall.

The transcripts will be available eventually (maybe soon), but we don’t know when. I think it would be interesting to compare get them to explain how many of this tiny group of ASD kids also have mitochondrial diseases or disorders. I wonder if they are trying to imply that the rest of the “epidemic” is caused by tuna mercury, chicken mercury or MMR, aluminum, assortative mating or what?

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