Archive | Autism RSS feed for this section

Generation Rescue: a dishonest autism charity?

6 May

Generation Rescue has a long history of promoting bad science. They even have tried their hand at it themselves before, with a phone survey that was so bad it would have earned a college freshman in epidemiology a failing grade.

So when they came out with their own “study” of vaccination rates around the world, you can imagine I didn’t expect it to be good. In fact, I just avoided it altogether until they sent me an email telling me how good it was.

So I looked.

It was worse than I expected. Far worse.

The “study” is here. Generation Rescue (GR) looks at the vaccine schedules for multiple countries and compares this with the infant mortality rate and autism rates in those countries.

I read it and, Oh…my…god… I expected bad science and poorly/biased interpretations. Instead, what I found was pretty clear evidence that Generation Rescue is knowingly distributing misleading information.

Before you get worried that this post is way long and question whether you really want to read the details, here’s the short version:

1) They compare infant mortality rates between the US and other countries–even though it is clear (according to their own expert no less!) that the US uses different criteria for infant mortality and it isn’t accurate to compare the US infant mortality to that in other countries.

2) They compare autism rates amongst countries to show the US has the highest rate, suggesting that the higher the number of vaccines the higher the autism rate. They just “forget” to tell you that the prevalences for the other countries are from old studies. We can debate why the reported autism prevalence is going up with time, but no one debates that the older studies report lower prevalences than we see now. So, why does Generation Rescue compare prevalence in the US using 2002 data for kids born in 1994 with, say, a Finnish study using 1997 data on kids born as early as 1979? I consider them very biased, but not incompetent enough to miss those fatal mistakes in their study.

3) They claim that the US has the highest vaccination rates and the highest autism rates. They conveniently ignore prevalence from Canada and the UK, which have comparable prevalences to the US and much much lower numbers of vaccines. Yes, you read that right, they left out the well known studies that would show that their conclusions are nonsense.

The worst part is that it is almost certain that Generation Rescue didn’t make an honest mistake. These are so obvious that whoever wrote that “study” had to know he/she was producing what amounts to the lowest form of junk pseudoscience.

For those who want the gory details, here they are:

Infant Mortality Rates

Generation Rescue points out that the reported infant mortality rate is highest in the United States, which also has the most childhood vaccines. All well and good, but can we really compare the infant mortality rates from country to country?

When I type infant mortality rate into a google search, the first hit is a Wikipedia page which, as it turns out, addresses exactly this question.The answer is a resounding “NO”, we can’t compare the US infant mortality rate with that of other countries.

While the United States reports every case of infant mortality, it has been suggested that some other developed countries do not. A 2006 article in U.S. News & World Report claims that “First, it’s shaky ground to compare U.S. infant mortality with reports from other countries. The United States counts all births as live if they show any sign of life, regardless of prematurity or size. This includes what many other countries report as stillbirths. In Austria and Germany, fetal weight must be at least 500 grams (1 pound) to count as a live birth; in other parts of Europe, such as Switzerland, the fetus must be at least 30 centimeters (12 inches) long. In Belgium and France, births at less than 26 weeks of pregnancy are registered as lifeless.

So, who wrote that 2006 article in US News & World Report?

Bernadine Healy.

Yep, the same Bernadine Healy that is Generation Rescue’s favorite “mainstream” doctor.

One has to believe that GR saw that article in Wikipedia and the US News article. They are, after all, Google Ph.D.’s. Given the author was Bernadine Healy, they have to have considered it accurate, don’t you think? And, yet, GR conveniently forgets to mention the differences in how the US and other countries count infant mortality in their vaccines cause autism “study”.

Autism Rates 1: Autism Prevalence by country

Start with the conclusion of the Generation Rescue “study”:

This study appears to lend credibility to the theory that the U.S. vaccine schedule is linked to the U.S. epidemic of autism, particularly when compared to the published autism rates of other countries.

Given this bold claim, it is critical that they use good data for the autism rates. By “good” I mean that they need data that they can accurately compare to the CDC reported prevalence of 1 in 150. That data was taken in 2002 on 8 year old children. I.e. kids born in 1994. Since reported prevalence numbers are going up with time, it would be very misleading if they were to use, say, prevalence numbers from the early 1990’s, wouldn’t it?

Any prevalence that they use would have to use prevalence numbers from about the same time, on kids of about the same age.

Here’s their table comparing the autism rates.

gr_table3

Let’s take a look at the studies they cited for their numbers, shall we?

Iceland: Prevalence of Autism in Iceland. This 2001 study uses kids from birth years 1984-1993. I.e. most (if not all) of the kids are from the time before the big upsurge in autism diagnoses. Hardly a good comparison to the 2002 CDC study, eh?

For Sweden, they use a paper called, “Is autism more common now than 10 years ago?” from The British Journal of Psychiatry. Published in… 1991. That’s pre DSM-IV. Amongst other problems, they won’t be including the other PDD’s in the autism spectrum, like the CDC study does. Besises, the kids from the CDC study weren’t even born yet, it was so old! Is there any wonder that the Swedish study shows a lower prevalence?

For Japan, they use a paper titled Cumulative incidence and prevalence of childhood autism in children in Japan. The study uses data from 1994 on kids who were born in 1988.

Are you starting to see the pattern here? Time after time, GR is comparing US 2002 prevalence data to much older data from other countries. Let’s go on:

For Norway, they use the paper Autism and related disorders: epidemiological findings in a Norwegian study using ICD-10 diagnostic criteria. The paper was published in 1998 on children 3-14 years of age. Simple math suggests they had kids with birth years going back to at least 1984 in that study. Hardly a good comparison to kids born in 1994.

For Finland, they use Autism in Northern Finland. Here is an updated version from 2005. The study uses data from 1996-97, on kids up to 18 years old. I.e. they are using kids that were born as early as 1979. Also, they are using data on patients from hospital records who used “communal health services”. Sounds a lot like “inpatient”–one of the critiques that GR uses against studies from Denmark. Also, the Finland study didn’t include Aspeger syndrome, as that was a new diagnosis at the time. Hardly a good comparison to the CDC study.

For France, they use Autism and associated medical disorders in a French epidemiological survey. This uses “French children born between 1976 and 1985”.

For Israel, they use Autism in the Haifa area–an epidemiological perspective. This paper looks only at autistic disorder (no PDD-NOS, no Aspergers, no Rett’s no Childhood Degerative Disorder). Right off the bat that reduces the prevalence and makes it impossible to compare the the CDC 2002 study. The Israell study also is, you guessed it, based on kids older than the CDC study: children born between 1989 and 1993.

Last, Denmark. If you’ve been following the thimerosal debate, you know this is going to be ironic. They use Madsen’s paper, Thimerosal and the Occurrence of Autism: Negative Ecological Evidence From Danish Population-Based Data. Generation Rescue refers to this study (incorrectly, I might add) as “This one goes beyond useless”. I guess “useless” is only when it is used to refute the thimerosal hypothesis? Come on, GR, this level of hypocrisy is just painful.

Missing Studies

There are some very well known studies that Generation Rescue somehow forgot to include in their “study”. Could this be due to the fact that they are very good counterexamples to the vaccine-hypothesis ? Let’s look at some and see, shall we?

United Kingdom: Pervasive Developmental Disorders in Preschool Children: Confirmation of High Prevalence ( study performed in 2002 with a prevalence of 1 in 170), and Pervasive developmental disorders in preschool children (study performed in 1998/9 with a prevalence of 1 in 160).

Canada: Pervasive Developmental Disorders in Montreal, Quebec, Canada: Prevalence and Links With Immunizations (birth years 1987 to 1998. Prevalence 1 in 154).

Wow, the United Kingdom and Canada have prevalence numbers comparable to those in the US!

So, let’s complete the comparison, shall we? What is the vaccine schedule like for the UK and Canada? Using the Generation Rescue “study” we get 20 vaccines for Canada and 21 for the UK.

Wow, that’s way less than the US (with 36), and they have the same autism prevalence as the US? How could that be? Is it, perhaps, that the autism is NOT related to the number of vaccines in a given country’s schedule?

Anyone doubt why GR left the UK and Canada off their table of Autism Prevalences Around the Globe? No, I am not giving them a pass that this could be an honest mistake.

To quote Generation Rescue’s top funny guy (Jim Carrey), “How stupid do you think we are?”

Are the Minnesota Somalis political pawns?

5 May

Let me start out by saying I hope a good answer is found for the high number of Somali children getting special education services in MN under the autism label. The only way to do that properly will take time, money and cooperation from the Somali community.

That said, I will admit that I have avoided this subject up until now. It was very obvious to me that without accurate numbers, this is likely going to just be a game of politics. And, let’s face it, educational numbers are not an accurate way to measure autism. The fact that David Kirby chimed in very early didn’t help either. If I’ve learned anything reading blogs, it is that Mr. Kirby is quite willing to misuse data.

As background, there are more young Somali kids in the Minneapolis schools getting services in autism preschools. Groups such as Generation Rescue have been using this to support the idea that vaccines cause autism. Others have been claiming that vitamin D deficiency is to blame.

It is worth noting that the fraction of Somalis in the autism preschools is about 1%. While this is high compared to the non-Somali’s in preschool, it is about the same fraction for older children in the Minneapolis schools.

As I said, I was planning on leaving this subject alone. That is until I read the Simons Foundation blog on the topic, reporting on this report. The SFARI blog (as it is known) uses precise language to describe the situation (something that would be good for us all to learn).

Public health clusters are usually suspect, but in a report released last week, the Minnesota Health Department and the Centers for Disease Control and Prevention confirmed that, among 3- and 4-year-old children, those of Somali origin are two to seven times more likely to be placed in preschool programs for autism.

That’s right. They didn’t find that more Somali kids have autism, they found that they were placed in autism programs. You don’t need a medical diagnosis to be placed in an autism school program.

But that wasn’t what got me to write this post. What prompted me to blog was the next sentence:

The report also found other ethnic trends in these classes: just two Asians and one Native American between 2005 and 2007.

Wow. There were even years with zero Asians in those classes. If one is to take the data from the Minneapolis schools as indicating that Somalis have more autism, one has to then explain why Asians and Native Americans have almost no autism!

Why does this bug me? Because it exposed the exact sort of hypocrisy that typifies the efforts of Generation Rescue, Dan Olmsted, Mark Blaxill, and David Kirby (to name a few): “Look until you find something that supports your preconceived notion, then stop!!!!” They have to stop before they find something that would be difficult to explain–like the low prevalence amongst Asians and Native Americans.

Generation Rescue’s motto is “Autism is preventable and reversible”. If so, why aren’t they looking into the low administrative prevalence amongst Asians and Native Americans in Minneapolis.

Jenny McCarthy has often complained that no one wants to study her son to see why he was cured of autism (which begs the question: why hasn’t the alternative medical community studied him?). Why isn’t Jenny McCarthy and her partner Jim Carrey in Minneapolis calling for a study of the Asians and Native Americans in Minneapolis?

I could keep going on and on, but you get the point. Generation Rescue cherry picks the data that supports their notion of vaccines causing autism. They ignore the inconvenient information. One group, the Somalis, are used as political pawns because they help GR with the idea that vaccines cause autism. As to the idea that autism is “preventable and reversible”? I guess if GR really cared they would be looking at the Asians and Native Americans in Minneapolis.

Mark and David Geier promise its true

4 May

The South Jersey Courier Post carries a story today concerning the father and son team of Mark and David Geier.

They have presented at the branch meeting of the U.S. Autism & Asperger Association concerning their own branch of autism related woo – treatment with Lupron. A process that has led them to stretch the truth beyond breaking point numerous times, claiming false affiliations and using friends and family as members of review bodies in order to pass ethical regulations. In a wider world of autism related woo, this is a particularly sordid story.

The Geiers say excess testosterone increases the toxicity of mercury, which they claim is the primary cause of autism, and that the suppression of testosterone production improves the ability to remove the poisonous mercury — a method often referred to as chelation therapy.

The drug Lupron, or leuprolide acetate, lowers testosterone in autistic children, which then frees up the toxic mercury, the Geiers say. The Geiers, who operate eight offices nationwide under the name “Genetic Consultants,” found that testosterone blocks the body’s ability to make glutathione and that mercury binds to glutathione.

So, the Geier’s are still clinging grimly to the mercury = autism belief. A belief for which there is no sound science whatsoever and so much against it would take too long to discuss in one blog entry.

And they are also claiming that they have ‘found that testosterone blocks the body’s ability to make glutathione’. Searching PubMed for ‘lupron glutathione’ returns no hits at all. So where have they found this? Under the stairs? Why aren’t they publishing this science if they’re so sure?

Lupron lowers testosterone and…

To prove there is a hormonal connection to autistic children, the Geiers displayed several studies that showed a major side effect of high testosterone in children is precocious (or premature) puberty. The Geiers said they found signs of premature puberty, such as facial hair, body odor and early sexual development, in 80 percent of the autistic children in their clinic.

Weird stats. When I searched PubMed for ‘precocious puberty autism’ I got one result back:

This is a presentation and discussion of clinical and laboratory data obtained on 13 girls with Rett syndrome…..Precocious puberty and respiratory alkalosis were not found in our patients

Huh. Fancy that. Not found. And here the Geier’s are claiming an 80% correlation rate between autism and precocious puberty. Maybe that results from the test they’re using.

The Geiers said they found signs of premature puberty, such as facial hair, body odor and early sexual development…

And yet they somehow failed to perform the very simple and definitive test for precocious puberty – an xray of the wrist. If bone age is one year older than their chronological age then they have precocious puberty. Simple. And not done by the Geier’s. You have to wonder why.

And here we have more hidden science.

Mark Geier said laboratory tests at his clinic show that after just three months on Lupron, autistic children improved in dozens of cognitive and behavioral ways.

Next time someone tells you that ‘big pharma’ are using unindependant research, tell them this: science published in a mainstream journal has its methods and results clearly published so that other scientists can attempt to replicate them. That’s about as independent as you can get. Here we have the Geier’s simply saying these kids improved. No methods, no results, no science is shown. We’re just expected to take their word for it. That’s about as unindependent as you can get. Anyone would think the Geier’s have a vested interest in Lupron doing well.

Insurance companies start to abandon quack autism “cures”

3 May

Some good news. Mary Ann Roser reports on the investigations by major health insurers that are creating funding difficulties for autism clinics which specialised in unproven and dubious treatments for autism:

The owner of an Austin-area clinic that treats children with autism — using techniques that are controversial in mainstream medicine — says investigations by three major insurers have left it with a pile of unpaid claims and a crisis: She’s had to lay off most of her staff and drastically reduce the clinic’s hours.

In addition, Kazuko Grace Curtin said the Texas Medical Board is investigating her medical director. She and the doctor — Jesus Caquias — say the investigation is a way of harassing them because they offer nontraditional care for autism patients.
[…]
CARE Clinics is struggling now because Aetna stopped paying claims in August and is questioning “about $1 million” in claims, Curtin said. Cigna and United Healthcare stopped payments in October and are disputing smaller amounts that Curtin declined to reveal. United is paying again but at a lower rate, she said.

“What they were saying is, autism treatment is not established, it’s experimental,” Curtin said.

Spokeswomen for Cigna and United said the reviews were routine to ensure proper payments. Aetna declined to comment.

Curtin said she closed the two clinics in January to cope with the amount of paperwork she had to produce when the three insurance companies challenged charges for all patients treated in October, November and December. She reopened the Austin clinic March 6, but now it’s open 10 days a month instead of 20 and has 10 employees instead of 40, she said. The Tampa clinic won’t reopen until May, she said.

She also is delaying indefinitely a 30,000-square-foot medical building, school, corporate offices, sports facility, lodge and conference center in Dripping Springs.

“I need some funds,” Curtin said, declining to release specific financial details about her business. “I don’t know how long we can survive.”

The bad news is that while CARE Clinics extract money from increasing skeptical insurers, Thoughtful House is careful to extract the money directly from vunerable parents. Read the whole article for the other non-finanicial pressures on such clinics, and the pleas of victimisation from their owners.

Young autistic adults in the news

2 May

As I read the news today I just liked these two stories. They are short and about teenagers/young adults with Asperger Syndrome or Autism.

The first one is about a 20 year old in a vocational rehabilitation program in Arizona. Goodwill needs employers for Workforce Development Program.

Here’s a quote:

Maldonado said when placing their clients they begin with their interests and for Jeff that interest is books, he loves books, encyclopedias, history, and science fiction.

“He loves books so much, he can get distracted,” said Maldonado with a chuckle. “Jeff is in charge of organizing our books and movies. He takes a lot of pride in what he does, he is very detail-oriented.”

As you can imagine, with this economy it is hard to make the jump from this job to a permanent job. I wish him good luck!

Another story, this time out of Rhode Island, Youth center changes young man’s life. In this story a young autistic found support with his church.

The young man, a parishioner of St. Brendan Church, said that he had no friends, and that his life centered around his mother Christine, a single parent and other family members who offered unconditional love and unwavering support, despite the challenging circumstances.

After many years of turbulence, Crosslin said that his life changed when he discovered the diocesan youth ministry centers two years ago while searching for a service project to fulfill confirmation requirements. He joined the building crew constructing the Haunted Labyrinth at the Rejoice in Hope Youth Center in Cranston, and later returned to the site as a character actor.

Sometimes I need to read stories like that to “decompress” from some of the other news in autism.

Woman and child hurt in HBOT explosion

1 May

CBS4 is reporting that a woman and child have been hurt in a HBOT Chamber explosion.

There is no indication that the child was receiving HBOT as part of ‘treatment’ for autism. In fact, there’s no indication the clinic in question practice HBOT for autism at all.

Or thats what I thought until I read this page. Recognise the lead name there?

Dr. Rashid Buttar, D.O., FAAPM, FACAM, FAAIM
Broken Pathway in Autism: The Mercury Poisoning of our Children and Their Inability to Detoxify

The very same Rashid Buttar who I wrote about in 2006? Yes. The same Rashid Buttar who has been subject to numerous disciplinary hearings? Yes.

The owners of this HBOT installation describe Buttar as ‘forward thinking’. Hmm.

And so, I have to wonder – was this child autistic and undergoing a totally pointless HBOT session when the chamber exploded? Time will tell..

EDIT

Orlando Sentinel say:

The boy was flown to Broward General Medical Center. Broward Sheriff Fire-Rescue spokesman Mike Jachles said the boy was badly burned and is in critical condition.

If you’re a praying person, then pray for this boy. If you’re not, then hope for the best outcome.

Generation Rescue: an autism research organization?

1 May

Generation Rescue has been trying to rebrand itself as a “research” based organization over the past year. This is a tough sell given their track record of promiting junk as science. Even if they didn’t keep touting their phone survey it would be difficult to forget it. Rather than write the effort off as bad, they cherry picked the “results” which support their political and public relations agenda.

I was reminded of this while I was writing a review of the Science Advisory Board for the newly minted Autism Science Foundation. Why not do the same for Generation Rescue?

it is worth noting that it would have been impossible to review GR’s science advisory board a year ago. It didn’t exist from what I recall. I recall checking fairly recently, and the advisory board consisted of one person.

But, that was the past. GR is ramping up their Advisory Board. Below is the current Advisory Board for GR. I use the ISI Web of Knowledge database to check for papers with the Science Adviser as “author” and the topic as “autism”, just as I did for the Autism Science Foundation. I also did a few other checks, as you will see.

S. Jill James

I get 11 autism papers for Dr. James papers in the search. One of which was cited 84 times (which is very respectable), but most of which have been cited 1 or 0 times.

I found something interesting on her website. Under “Research Support” she lists, “CDC: Mechanisms of Oxidative Stress in Children.”

I find it amusing that the top science adviser to Generation Rescue is accepting funding from the CDC. Were she on the “other side” of the fence on the vaccine question, GR would certainly have claimed that accepting money from the CDC is a clear indication of bias and would call for “independent” research.

I guess you can be independent and still accept money from the CDC.

Dr. Richard Deth

Dr. Deth was recently discussed by Kev, by the way. He has two autism papers in the ISI database. One of which was cited 31 times.

Woody R. McGinnis, M.D.

I only get 3 papers from the ISI Web of Knowledge database for McGinnis WR and topic=autism. Apparently they aren’t listing his papers in the Journal of Biochemistry and Biotechnology which came out last year.

Jerry Kartzinel, M.D.

I get no hits for an ISI search on papers for Kartzinel as author and subject=autism. He is, of course, the co-author with Jenny McCarthy on her recent book. Not exactly research, though.

This is not a group of heavy hitters in autism research. As noted, Dr. James has a few papers which have been cited a number of times. But, given the nature of this group (and of Generation Rescue) the question has to be asked–is this a real advisory board or is it for show? In general, this is a pretty lightweight group in the autism world. When Jill James is your “heavy hitter” you aren’t going to impress many people who actively watch autism research.

Besides, when has GR ever really acted like they want “scientific advice”? Seriously–they seem to be an organization which thinks scientists exist to confirm the observations of parents.

Compare this Science Advisory Board to that of the Autism Science Foundation, which we recently discussed. GR, an organization that has been around for years, is just putting together their Advisory Board and, well, the effort is slow to get moving. ASF had a reasonable Advisory Board at their launch.

But, Generation Rescue isn’t an organization to let their glass house stop them from throwing stones. You can imagine that when an organization like the Autism Science Foundation comes out with a stance against the vaccine/autism hypothesis it would see some “heat”. True to form, but I admit later than I expected, Kim Stagliano put forth a mild attack. As attacks go, it’s actually sort of amusing. Ms. Stagliano uses as her theme an idea that the ASF is stuck in the past in their approach to research. I find this attack by Ms. Stagliano amusing given Generation Rescue’s approach to research. GR’s concepts of research are like a neaderthal man found in a glacier: they represent ideas frozen in time, and ideas whose evolutionary path led to nowhere. You know the ideas: MMR and thimerosal caused an autism epidemic.

I am left wondering why Generation Rescue doesn’t have Dr. Andrew Wakefield as a science adviser. Certainly if anyone typifies the antiquated stance on science that Generation Rescue holds, it is Andrew Wakefield. GR certainly shows great admiration for the man who fueled the MMR/autism scare in 1998. But, it is one thing to admire the man, it is another thing to add someone to your advisory board whose research is considered an embarrassment by the vast majority of the research community. Who knows, Perhaps Dr. Wakefield turned GR down?

If I may take another minute on Ms. Stagliano’s blog post. She calls in the spectre of the Tobacco companies. It seems to be a favorite contrivance for her and the entire Generation Rescue/Age of Autism crowd. Favorite and patently ridiculous. Here’s what she had to say.

If the American Lung Association had spun off a new group headed up by those with a strong allegiance to Philip Morris and called themselves, INCS (“It’s Not Cigs Stupid!”) would anyone take them seriously outside of those with a financial interest in cigarettes?

The tobacco gambit is a bad comparison to autism from the outset. Epidemiology showed clearly that tobacco causes cancer. The epidemiology on MMR and thimerosal has shown they didn’t cause an “epidemic” of autism.

What takes the tobacco gambit from bad to ridiculous is when, only a few paragraphs later, Ms. Stagilano cites Bernadine Healy. Dr. Healy accepted tobacco company money as part of an organization which denied the dangers of second hand tobacco smoke. One sure sign that Ms. Stagliano’s post is basically propaganda–she refers to Bernadine Healy as “one of the most trusted doctors in America”. Er. Yeah. I would love to poll the “man on the street” and see how many have even heard of Bernadine Healy. Plus, I guess someone can be accept tobacco company money and still be “trusted”? Wll, at least as long as they support the “vaccines might cause autism” concept, eh Ms. Stagliano?

I actually wish Generation Rescue well with their effort to build a Science Advisory Board. I would hope that they would (a) find real scientists and (b) take their advice.

It would be a new direction for Generation Rescue.

Autism Science Foundation: a Research based org

30 Apr

We need more quality research in autism, no doubt about that. Private organizations can fund/manage this. But, there are Research Organizations and ‘research’ organizations.

I was interested to see the new autism organization emerge–the Autism Science Foundation. Kev has already discussed introduction of the ASF.

When I saw ASF’s webpage, I was immediately drawn to the paragraph on their scientific advisory board:

ASF’s Scientific Advisory Board, still in formation, includes Dr. Emanuel DiCicco-Bloom (UMDNJ-Robert Wood Johnson Medical School; past program chair of the International Society for Autism Research); Dr. Ami Klin (Yale Child Study Center); Dr. Harold Koplewicz (NYU Child Study Center); Dr. Sharon Humiston (University of Rochester); Dr. Eric London (NYS Institute for Basic Research in Developmental Disabilities and co-founder of NAAR); Dr. Catherine Lord (University of Michigan); and Dr. Matthew State (Yale Medical School).

There are some well-known names in there. Dr. Catherine Lord, for one, is a real heavy hitter in the autism world. There are some other names that were new to me, so I decided to do a quick check on them. One measure I use is how many papers a person has in Autism. To measure this, I used the ISI Web of Knowledge database. I searched for papers with the person in question as author and with topic=autism. I checked number of papers and number of highly cited papers. Keep in mind that not all papers get listed by ISI. But, it is one way to measure how active someone is in autism.


Dr. Emanuel DiCicco-Bloom

Six papers found in the ISI database under the topic “autism”. This out of 58 papers total, many very well cited. He is also past chair of INSAR.

Dr. Ami Klin

32 papers on autism. Six of which have been cited over 50 times. That is impressive. He has six autism papers published in 2008–so he’s currently active in research.

Dr. Harold Koplewicz

He’s at the NYU child study center. I don’t get any hits for him as an author with the subject=autism in the ISI database. He does have a long publication record, though.

You may recall his name. Dr. Koplewicz and the NYU Child Study Center was behind the “Ransom Notes” advertisement campaign that didn’t go so well.

Dr. Sharon Humiston

She is affiliated with the University of Rochester.

I don’t get any autism publications from her in my search. What I do get in a Google search is that she testified with Jeffrey Bradstreet and others in Senator Dan Burton’s hearings on vaccines and autism. She welcomed the call for research into whether MMR or thimerosal were causing autism–so claims that she doesn’t have an “open mind” don’t apply here. However, she has been very clear on the idea that there is no evidence linking vaccines to autism. She does have a number of papers on immunization, as well as a book Vaccinating Your Child: Questions and Answers for the Concerned Parent.

Dr. Eric London

I get four autism papers for Dr. London in the ISI database. One of which, The environment as an etiologic factor in autism: a new direction for research shows that this is also someone who has demonstrated an “open mind” to the the idea that environmental causes could be important in autism etiology. But, I expect he doesn’t get much credit for that in the vaccines-cause-autism world since he doesn’t like the “correct” version of environmental etiology.

Dr. Catherine Lord

46 papers on autism, with 17 papers cited over 50 times. Wow, 1/3 of her papers are very highly cited! That is impressive.

Her bio includes this statement of awards:

Lord is Chair of the Early Intervention in Autism Committee, National Academy of Science. She received the Irving B. Harris Early Childhood Lecture Award in 2004 and was a Finalist for the New York University Child Study Center Scientific Achievement Award in 2005.


Dr. Matthew State

Dr. State is from Yale. I only get 3 papers from him in my search. One of which, though, is in Nature Genetics and has been cited 178 times. If you aren’t familiar with the Nature journals, I’ll point out that these are highly prestigious journals. Suffice it to say, nothing in the “vaccines-cause-autism” research world has even come close to a journal of this caliber.

This is a pretty good group for a brand new organization–one that is still growing. We will have to wait to see what the Autism Science Foundation does, but for now it appears that, yes, there is a new research based autism organization in town.

Two new genetic studies – care required

30 Apr

Its always interesting to read about new quality science and two new genetic oriented studies in Nature give us just that – quality science.

The first of two Nature studies released today found that 65 percent of autistic participants shared a variation between cadherin 10 and cadherin 9, a region of the genome that controls cell-adhesion molecules in the brain. Those molecules help brain cells connect, and autism researchers have long suspected that trouble there may be linked to the disorder.

…

The second study suggested a link between autism and an excess of genetic material associated with ubiquitin, a protein involved with cell-adhesion molecules and connections between brain cells.

Truly fascinating stuff it looks like and yet I think the time is fast approaching when the need for an ethics debate about this becomes paramount.

I am on record as saying that I do not think science could be (as oppose to should be) curtailed when following research interests. In other words, we couldn’t stop an autism researcher from finding a cause or cure even if we wished to. Politics and research science are a bad mix.

However, that should not ever stop us from debating how to use (if at all) such a thing and the following statement from one of the research members is – to me – a bugle call to start thinking of ways we (the autistic community and the scientific community) can do this and remain on good terms:

If we could remove this variant from the population, just take it away … as much as 25 percent of autism would disappear, which is highly significant,” Hakonarson said.

It is indeed, highly significant. It opens up not only a world of scientific possibility bit it must also open up a genuine debate about the ethical issues surrounding this. But before we do this we need to clarify statements like this. 25% of the entire ASD population? 25% of an individual? 25% of the more disabling aspects of autism? 25% of what exactly?

So we need to clarify things like this. Lets hope we can do this very soon and start a respectful debate between two camps who have worked well together up till now – science and neurodiversity.

A better future for autistic adults

29 Apr

Following on from the National Autistic Society’s I Exist campaign and the massive support for the Autism Bill in Parliament the UK Government, after working closely with an external reference group chaired by NAS chief executive, Mark Lever, has launched a

consultation process for the first government strategy to support adults with autistic spectrum conditions (ASC) to live life as full and equal citizens.

The consultation documents can be accessed online at the Department of Health. At present the consultation documents are print only but should be available to complete online before the consultation period ends on September 15th. The consultation only applies to England. The Welsh Assembly Government already has a Strategic Action Plan for Autistic Spectrum Disorders (ASD), published in April 2008. An ASD Strategic Action Plan is being finalised for publication in Northern Ireland and in Scotland the ASD Reference Group has published guidance to local agencies on commissioning services for people with autism. While these separate arrangements may reflect local differences it will be interesting to compare them in order to see how adults are being served across the United Kingdom.

The government has outlined 5 areas of need: social inclusion, health, choice and control, awareness raising and training, and access to training and employment. The NAS has a broader range of concerns on its website which it would like people to consider when completing the government questionnaire.

So, after years of being ignored or ineligible, autistic adults are finally being considered and their views taken into account in formulating statutory guidance for local authorities. So spread the word and mke sure the government hears your views.

Tags: , , ,

← Older Entries
Newer Entries →