Another Big Day in Sacramento – And the Fight Goes On

11 Feb

An action alert from The Arc of California and United Cerebral Palsy. Yesterday was one of the hearings on the proposed budget cuts for the disabled in California. Due to good advocacy, there was a big turnout.

The fight goes on. If you are in California and you haven’t called your representatives yet, do so.

Dear Friends,

We had another great turnout in the Capitol yesterday, even bigger than last week.

The members of the Senate subcommittee conducting the developmental services budget hearing – Senators Mark DeSaulnier, Elaine Alquist and Bill Emmerson — listened to us attentively. The hundreds of you who talked to them were, if anything, even more articulate and compelling than last week, and they heard you.

And everyone in the Capitol was aware of our presence. They could hardly overlook it when the security people had to close off admission to the 4th floor.

Neither the Senate nor the Assembly budget subcommittee took votes on Governor Brown’s proposed $1.1 billion cut in the budget for community services for people with developmental disabilities. (The governor’s proposal calls it a $533.5 million cut, and we’ve been estimating it at $750 million including lost federal funds, but the new Senate staff analysis put the total cut at more than $1.1 billion.)

So the fight goes on. The Senate and Assembly budget committees could start making real decisions as early as next week.

Here are two things you can do now:

1. If you haven’t called your own local state senator and assemblymember to protest the cuts, please call today.

The most important thing when you call is to speak from your heart. Tell them why you care and what the end of Lanterman Act services could mean to you and those you care for.

If you’re worried that they might think you’re being alarmist, you can quote the Senate budget subcommittee staff’s comments from yesterday’s hearing agenda. In dry government language, the staff member says the same thing we’ve been saying:

“Subcommittee staff believes that the overall [proposed budget cut] is not fully feasible…. Significant reductions have occurred within the developmental services system over the past several years. These reductions have included some eligibility changes, significant changes to services, increasing family cost-sharing, reducing rates, and related actions. As a result, reductions of the magnitude that are proposed are not achievable if the Lanterman Act is to be maintained.”

And again, if you don’t know who your local state senator and assemblymember are, click on http://capwiz.com/thearc/state/main/?state=CA&view=myofficials, enter your ZIP code, click on “Go,” scroll down to “My Elected Officials,” and click on “State Senators” and then again on “State Representatives.” Call their Sacramento offices unless you already know someone who works in one of their local offices. And be sure to get the name of the staff person you talk to, so you can call or email the same person in the future.

2. Forward this Action Alert to everyone you know who you can ask to make the calls and also join UCP-Arc Action E-List, our most important tool for mobilizing support at critical moments.

To join the list, click on http://capwiz.com/thearc/state/main/?state=CA&view=myofficials (the same place you go to find out who your senator and assemblymember are), scroll down a little to “California Legislative Action Center,” click on “Action E-List,” and fill in your contact information.

And thank you for your advocacy.

Greg

Greg deGiere
Public Policy Director
The Arc and United Cerebral Palsy in California

The Autism-Vaccine Debate: Why It Won’t Go Away

11 Feb

Who said it was? Backstory: “The Autism-Vaccine Debate: Why It Won’t Go Away” is a recent blog post by David Kirby at the Huffington Post. Yes, he’s come back to talk about autism and vaccines.

I say again: who says the debate is going away? The scientific debate on the main issues: thimerosal and the MMR is over. That scientific debate has been over for some time. The rising autism “rate” wasn’t caused by mercury. It wasn’t caused by MMR. Autism isn’t a “novel” form of mercury poisoning. These facts don’t stop activist groups and online discussions, or the debate elsewhere for that matter.

The debate isn’t going away, but is is morphing. From the piece by David Kirby:

There is clearly no single cause of autism, and we are not going to find answers looking only at genes, or for that matter, only at thimerosal or MMR.

David Kirby’s main contribution to the discussion was his book: Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical Controversy. Mr. Kirby has been a major proponent of the mercury hypothesis since he started on that book, fed by research garnered by SafeMinds founder Lyn Redwood. The book wasn’t about “vaccines” and the autism epidemic, or “environmental causes of an autism epidemic”, it was about “mercury in vaccines and the autism epidemic”.

The debate isn’t going away, but it is getting weaker. And it’s just moving a few goalposts: Let’s play down mercury. Let’s play down MMR. It’s the “Autism-vaccine” debate, not “Mercury in vaccines and the autism epidemic”.

Mr. Kirby does in this blog post what he has done so well for the past few years. He puts the current talking points out there, nicely packaged. Here’s a good example, where he even manages to include a plug for the latest pseudo-research. It’s amazing, really:

That’s because evidence of a vaccine-autism link did not come to them via a 12-year-old study published in a British medical journal, nor from Hollywood celebrities: Not very many had heard of Wakefield until recently.

Some of these parents actually keep up with the science, including a new review of autism studies in the Journal of Immunotoxicology which concludes: “Documented causes of autism include genetic mutations and/or deletions, viral infections, and encephalitis following vaccination.”

Simply amazing. People haven’t heard of Wakefield, but they know about a paper that just came out yesterday in a relatively obscure medical journal? It’s product placement. Very slick. Mr. Kirby plugs this paper as though it is as natural as all the judges on “American Idol” drinking from great big red Coca Cola cups.

He also gets in the “the discussion isn’t all about Wakefield” theme that is in the current responses to the disclosure of fraud in Mr. Wakefield’s research. “Not many people had heard of Wakefield until recently.” As a side note, the obscure Mr. Wakefield appears on 30 pages of Mr. Kirby’s book, Evidence of Harm.

Let’s check whether people have heard about Mr. Wakefield. According to a recent Harris poll (one that Mr. Kirby cites, by the way):

In the new Harris Interactive/HealthDay poll, 69 percent of respondents said they had heard about the autism-vaccination theory — but only half (47 percent) knew that the original Lancet study had been retracted, and that some of that research is now alleged to be fraudulent.

The question “Are you aware that the medical journal that published the paper linking vaccines to autism has now withdrawn the paper, and a published account describes the research as fraudulent?” 47% of people asked said yes.

That’s a pretty big number of people who not only (a) knew about Mr. Wakefield’s paper but also (b) knew it had been retracted and described as fraudulent. What other research paper would the public know about in such great numbers, 12 years after publication?

To state the obvious, yes, Mr. Wakefield and his research was known. Well known. It has been a big piece of the vaccines-cause-autism debate.

Here’s the table from that Harris poll question, showing that 47% of people had heard about the retraction and fraud. Even more important, take note of the fact that people who are informed about the retraction and the fraud are much less likely to believe that vaccines cause autism (click image to make big):

Yep, 65% of people who have heard about the retraction and fraud say that the vaccines-cause-autism idea is “not true”. Mr. Wakefield’s work was known and important to the vaccines-cause-autism cause.

Mr. Kirby then goes into the standard talking points of the day: only two vaccines (MMR) and one ingredient (thimerosal) have been explored for relationship to autism, followed closely by a denial that any of those studies were of any value because they are performed by people who have a “vested interest”.

Of course, “vested interests” in those promoting the vaccine hypothesis, both professional and financial (of which Andrew Wakefield is only the most prominent example) are ignored. As we quickly see as Mr. Kirby warns us that the expected SafeMinds response is on the way to the recent paper showing no link between thimerosal exposure and autism.

Mr. Kirby finishes with “The CDC estimates that there are about 760,000 Americans under 21 with an ASD. Even if just 1 percent of those cases was linked to vaccines (though I believe it is higher), that would mean 7,600 young Americans with a vaccine-associated ASD. ”

Yes, Mr. Kirby is adapting. Adapting in much the way that I have said the vaccine-causation community needs to adapt in order to stay alive. They need to abandon the “epidemic” rhetoric. Claim that if there are people with vaccine-induced autism, the number is very small, too small to be picked up by epidemiology.

Rather than really adapt, Mr. Kirby wants to play both sides of this. He wants to say, “what if the number is really small” and say that the data available show that the rise in autism prevalence is correlated with vaccines.

At the risk of being accused of “product placement” myself, I can’t help but bring up an incident discussed in the book “The Panic Virus“. I don’t have the book handy, so I apologize if I get this not 100% accurate. Seth Mnookin tells of talking to Dr. Jon Poling, father of Hannah Poling, during an AutismOne conference. While Dr. Poling is telling Mr. Mnookin that, yes, the concession in the vaccine court isn’t about causation, David Kirby is giving his talk saying exactly the opposite.

One question I know I will face soon is: why do I bring up David Kirby again? Why not move on from the vaccine debate. In the end it is because of statements like this:

In my opinion, many children with autism are toxic.

After over five years as a self-described member of the autism community, David Kirby still uses damaging language. Children are not “toxic”. Even children who have demonstrated heavy metal poisoning (which autism is not) are not “toxic”. If you touch them, you don’t get poisoned. They are “intoxicated”. But, that doesn’t read well, does it? I’ll say it again, autism is not a form of mercury poisoning. I really don’t need my kid labeled “toxic”.

I don’t know if David Kirby is “anti vaccine” or not. If you notice, I rarely use the term. I don’t care if David Kirby is anti vaccine. It isn’t the label “anti-vaccine” that matters. David Kirby is intellectually dishonest and his actions are irresponsible. On a more personal note, he puts forth an image of autism that is damaging to my kid.

Sloppy science – a perfect example of how the anti-vaccine crowd will listen to anything

11 Feb

Both Age of Autism and David Kirby have recently reported on a new review paper with Age of Autism describing it as ‘pretty interesting’ and David repeating a part of the abstract:

Documented causes of autism include genetic mutations and/or deletions, viral infections, and encephalitis following vaccination.

So, should we all in the skeptic camp be reaching for our humble pie and our knife and fork? Not exactly. Lets take a look at the contents of this paper. Lets start here:

The vaccine organism itself could be a culprit. For example, one hypothesis of the cause of autism is that the pertussis toxin in the DPT vaccine causes a separation of the G-alpha protein from retinoid receptors in genetically at-risk children (Farfel et al., 1999; Megson, 2000). The pertussis toxin creates a chronic autoimmune monocytic infiltration of the gut mucosa lamina propia and may disconnect the G-alpha protein pathways, leaving some G-alphamodulated pathways unopposed. In turn, the non-specific branch of the immune system is turned on and, without retinoid switching, cannot be down regulated.

Wow, blinded with the cool science yet? No, me neither. Go back to line one where it says ‘one hypothesis’. All that follows from that point is mere opinion. There’s no science to back it up.

Another organism of suspect is the live measles virus…

Yeah except its really not. The issues with the Wakefield hypothesis are so many and so thoroughly debunked, it really isn;t worth my time or yours going through them again and again.

There is evidence that Thimerosal (which is 49% ethyl mercury) is indeed harmful. Since the 1930s, Thimerosal has been extensively used as an antibacterial agent in vaccines (Geier et al., 2007). Thimerosal has been implicated as a cause of autism. Not only is every major symptom of autism documented in cases of mercury poisoning but also biological
abnormalities in autism are very similar to the side effects of mercury poisoning itself (Bernard et al., 2001)

Oh dear. Reliance on more thoroughly debunked rubbish in the form of well, anything by the Geier’s and the ridiculous Bernard ‘paper’. I’m happy to go through why these are rubbish but I think I’d be preaching to the converted.

The rest of the paper is a rogues gallery of debunked and fringe science. Helen Ratajczak cites the Geier’s numerous times, DeSoto and Hitlan, Nataf and Rossignol to name but a few. This isn’t a paper so much as an advert for the sort of poor science that was examined in the Autism Omnibus proceedings and roundly rejected by the Special Masters. For goodness sake, she even cites David Ayoub of the Black Helicopter infamy.

When it comes to this paper – handle with extreme caution. Its toxic rubbish.

The Thinking Person’s Guide to Autism

11 Feb

If you aren’t following this blog yet, you really should consider it. The Thinking Person’s Guide to Autism is a group blog, and a big and diverse group it is. Some of my old favorite bloggers are there (e.g. Corina Lynn Becker, Kristina Chew, Clay, Emily Willingham, Liz Ditz…) and many people I haven’t read before the TPGTA.

Kev wrote about the blog last June when it was fairly new. They are definitely living up to the hope that Kev expressed then.

The blog allows submissions and has a book coming out as well.

The mission statement lays it all out:

The Thinking Person’s Guide to Autism (the website and the book) exists to help people with autism and their families make sense of the bewildering array of available autism treatments and options, and determine which are worth their time, money, and energy. We also want to encourage respectful attitudes towards autistics and people with autism.

Why We Are Doing This
The Thinking Person’s Guide to Autism (TPGA) is the book and website we wish had been available when our loved ones with autism were first diagnosed.

Autism misinformation clouds and is perpetuated by the Internet. We want to make accurate information about autism causation and therapies visible, accessible, and centralized.

We also want to help new autism community members develop a positive yet realistic attitude, to appreciate the strengths while supporting the struggles of our loved ones with autism.

Our attitude is cautionary yet loving — we are interested in strong opinions, but not in negativity. Our families need their energies for evidence-based optimism!

How We See Ourselves
Think of us as a little bit of Snopes for the autism community — trusted, accurate, and friendly. Our essays will cover informed approaches to autism and autism treatments, as well as the personal experiences of people with autism and their families. Our authors are parents, professionals, and people with autism.

Our writers have defined opinions, and may not always agree with each other. That is both acceptable, and realistic, because autism means something different for every person with a diagnosis. We are not here to tell you what to do; we are here to give you tools and information so you can make informed decisions for yourself, your child, or your family.

Process and Submissions
We’d like TPGA to be a transparent, community-based effort. It helps that our community contains so many prominent and experienced voices.

Feel free to pitch us an essay topic. We also don’t mind if you submit an essay you’ve previously published. We want TPGA be comprehensive, not proprietary.

Please review our submission guidelines before sending in your essay.

You can also help us improve our Autism Resources page by leaving a comment about useful autism websites, books, movies, communities, and organizations.

Timelines
The submission deadline for our book was August 16. We’ll continue publishing essays online. The book will be published in Winter, 2010 through Deadwood City Publishing, and will be sold through Amazon.com.

Seriously, a blog well worth following. Professional, good content, broad spectrum of ideas. An excellent voice.

Chelation: oral not very effective, IV causes brain fog

10 Feb

One very common therapy in the Complementary and Altenative Medicine (CAM) world is chelation. It has been very popular amongst DAN doctors and other CAM practitioners in the autism community, largely based on the mistaken ideas that (a) autism symptoms are similar to mercury poisoning and (b) autism is caused by mercury (from vaccines and elsewhere).

I’ll say it here and I’ll repeat it at the end of this piece: any parent who believes his/her child is a victim of heavy metal poisoning should take that child to a medical toxicologist. Find an expert in toxicology. This is not a project to take on yourself and your child deserves the best. Find someone trained and experienced in toxicology. You can search by state or country.

That said, here are two articles I’ve run across recently which reminded me of why people should seek experts. First, the most common oral chelating agent (DMSA, succimer) is not very effective against mercury. Second, IV chelation can result in “brain fog” lasting days.

An NIH Research Matters article titled “Lead Poisoning Treatment Less Effective for Mercury” discusses measurements of blood mercury levels in children in a trial of chelation for high lead levels.

A drug commonly used to treat lead poisoning is relatively ineffective at removing mercury from the blood. The finding provides insight into a compound currently being used as an alternative therapy for autism.

Here are the concluding paragraphs:

A research team led by Dr. Walter Rogan at NIH’s National Institute of Environmental Health Sciences (NIEHS) sought to investigate whether succimer can also remove mercury from the blood. The team used blood samples and data from 767 children, aged 12 to 33 months, who participated in an earlier clinical trial of children who were treated for high blood levels of lead.

The research team measured mercury concentrations in blood samples collected prior to treatment, a week after beginning treatment with succimer or placebo, and again after 3 month-long courses of treatment. The study was funded by NIEHS, NIH’s National Institute for Minority Health and Health Disparities (NIMHD) and the Centers for Disease Control and Prevention. The results appeared online on October 1, 2010, in the Journal of Pediatrics.

The researchers found that, after 1 week, succimer lowered blood concentrations of mercury by 8%. In contrast, it reduced blood lead concentration by 42%. After 5 months, those taking succimer had blood mercury concentrations about 20% lower than the control group. However, the therapy had only slowed the rate at which the children accumulated mercury.

“Succimer is effective for treating children with lead poisoning, but it does not work very well for mercury,” Rogan says. “Although succimer may slow the increase in blood mercury concentrations, such small changes seem unlikely to produce any clinical benefit.”

In an article in Integrative Medicine, Joseph Pizzorno (a leading naturopath) talks about his experience with IV DMPS.

Unfortunately, my first experience with IV DMPS at the normal dosage (250 mg) resulted in significant “brain fog”. I experienced obvious impaired memory and decreased cognitive capacity for several hours (my wife asserts she noticed effects for a full week).

He goes on to tell that even though he believes that overall he is doing better due to lower mercury levels, his team asked him to refrain from IV chelation before meetings. His colleagues were able to see the obvious adverse effects (Dr. Pizzorno refers these as “adverse IV chelation effects”)

I repeat this here: any parent who believes his/her child is a victim of heavy metal poisoning should take that child to a medical toxicologist. Find an expert in toxicology. This is not a project to take on yourself and your child deserves the best. Find someone trained and experienced in toxicology. You can search by state or country.

Autistic young adults missing out on much-needed services

9 Feb

Prof. Paul Shattuck, of Washington University in Saint Louis, is one of those people I greatly admire. He has repeatedly taken on studies of groups who are often overlooked in the majority of studies.

In a just release paper, Prof. Shattuck has studied what happens to young autistic adults as they transition out of high school. Sadly, about 40% stop receiving services post high school. Levels of services for speech therapy, mental health, medical diagnostics and case management all dropped notably after high school.

Low income and African American young adults were much more likely to not receive services.

Shattuck also found that the odds of not receiving any services were more than three times higher for African-American young adults compared with white young adults and more than five times higher for those with incomes of $25,000 or less relative to those with incomes over $75,000.

Rather than summarize this work here, let me present the news release. Follow the link for a video press release with Prof. Shattuck.

What happens to young adults with autism spectrum disorders (ASDs) once they graduate high school and are no longer entitled to services?

“National, state and local policy makers have been working hard to meet the needs of the growing numbers of young children identified as having an ASD,” says Paul Shattuck, PhD, professor at the Brown School at Washington University in St. Louis. “However, there has been no effort of a corresponding magnitude to plan for ensuring continuity of supports and services as these children age into adulthood.”

In a first-of-its-kind study, Shattuck looked at rates of service use among young adults with an ASD during their first few years after leaving high school. He found that 39.1 percent of these youths received no speech therapy, mental health, medical diagnostics or case management services.

Shattuck also found that the odds of not receiving any services were more than three times higher for African-American young adults compared with white young adults and more than five times higher for those with incomes of $25,000 or less relative to those with incomes over $75,000.

In his study, published in the current issue of the Archives of Pediatric and Adolescent Medicine, Shattuck looked at medical, mental health, speech therapy and case management services.

He found that overall rates of service use were 23.5 percent for medical services, 35 percent for mental health services, 41.9 percent for case management and 9.1 percent for speech therapy.

This compares with service use while in high school: 46.2 percent received mental health services, 46.9 percent had medical services, 74.6 percent were getting speech therapy and 63.6 percent had a case manager.

Shattuck says that the years immediately following the age at which students typically exit from high school are pivotal for all youths.

“A positive transition creates a solid foundation for an adaptive adult life course and a negative transition can set the stage for a pathway fraught with developmental, health and social difficulties,” he says.

“Youths with ASDs are especially vulnerable during this period because of their challenges with communication and social interaction, greater reliance on others for aid and high rates of health and mental health problems.”

Shattuck notes that there is a dearth of nationally representative data on the prevalence and correlates of service use among young adults with ASDs.

“Basic descriptive data on the prevalence and patterns of service use are necessary for planning by policy makers and administrators,” Shattuck says. “Knowledge of service use can help identify underserved populations and plan targeted services.

“Estimates of service use and correlates will help clinicians, service providers and family members be more informed and better prepared as they try to help teens with ASDs navigate the transition from adolescence to young adulthood,” he says.

Data for this report came from the National Longitudinal Transition Study 2 (NLTS2), a 10-year study conducted from 2000-2010 by SRI International for the U.S. Department of Education that followed more than 11,000 youths enrolled in special education as they aged into adulthood.

The study included 920 youths enrolled in the special education autism category at the start of data collection in May 2001.

The study’s co-authors are Mary Wagner, PhD, principal scientist in the Center for Education and Human Services at SRI International, and Sarah Narendorf, Paul Sterzing and Melissa Hensley of Washington University in St. Louis.

More on the Stark Threat to Our Community

9 Feb

Below is an action alert from The Arc and United Cerebral Palsy in California. There is another hearing to discuss budget cuts for services for the disabled in California. That meeting is tomorrow. Now is a good time to act. Call. If you can, attend the hearing.

If you don’t know who to call, the Arc and UCP make it easy to find out:

If you don’t know who your state senator and assembly member are, they probably don’t know who you are, either, and it’s time for you — and them — to find out. Go to: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials , enter your ZIP code, click on “Go,” scroll down to “My Elected Officials,” and click on “State Senators” and then again on “State Representatives.”

This is local to California, but there are likely similar decisions being made in your country, your state. Find out how to act.

More on the Stark Threat to Our Community
Action Alert from
The Arc and United Cerebral Palsy in California

Dear Friends,

The stark threat to the existence of the Lanterman Act system of supports and services for people with developmental disabilities is becoming clearer.

I hope you’re planning on coming to Sacramento tomorrow (Thursday) to tell the Legislature that Governor Brown’s proposed cut to our system is just too big. And I hope that you plan to call your local state senator and assembly member today with the same message, if you haven’t called them yet.

If those are your plans, here’s some information that might help you decide what to say to them. If not, I hope this information will convince you to at least make the calls today.

Our friends at Keeping the Lanterman Promise have posted some simple figures showing examples of what the governor’s proposed $750 million cut would have to mean to real services. They helped me wrap my mind around how crushing the cuts would have to be to reach that total. Here they are: http://keepingthelantermanpromise.net/inform/governor-browns-2011-budget-proposal-what-every-family-member-needs-to-know

And just in case anyone thinks we’re just being alarmist, look at the Brown administration’s own proposed bill spelling out how they want to make a lot of these cuts: http://www.dds.ca.gov/Budget/Docs/201112_620RCPOSStandards.pdf

The first time you read it, you can skip the soothing words in the paragraph that begins “(a).” After you read on and see what the bill would really do, you can reach your own conclusion about whether the Lanterman Act would still exist in anything other than name.

When you get down to “(b),” you’ll see that the Brown administration wants the Legislature to commit itself to “standards” that limit “the type, scope, amount, duration, location, and intensity of services and support purchased by regional centers for consumers and their families.” The “standards” could even “prohibit the purchase of specified services” — whether the consumer needs them or not.

These arbitrary “standards” would turn the Lanterman Act on its head, taking the decision-making away from the people with disabilities, their families, and the rest of their IPP/IFSP teams.

So, if you can, please come to Sacramento tomorrow to tell the Senate budget subcommittee what you think of these cuts. We need to fill not just the room but the Capitol building, like we did for the Assembly hearing last week. The hearing starts at 9:30 a.m. or later in Room 4203. The Assembly budget subcommittee, which held last week’s hearing, may be voting on the cuts later in the morning across the hall in Room 4202.

And whether or not you can come to Sacramento, please call your local state senator and assembly member today. Tell them your address, why you care, and what you think about these cuts. Call their Sacramento offices unless you already know someone in one of their local offices. And whoever you talk to, save their names so you know who to call next time. Please believe me, there will be a next time.

If you don’t know who your state senator and assembly member are, they probably don’t know who you are, either, and it’s time for you — and them — to find out. Go to: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials , enter your ZIP code, click on “Go,” scroll down to “My Elected Officials,” and click on “State Senators” and then again on “State Representatives.”

And finally, when you testify to the subcommittee or talk to your legislators’ staff, be sure to mention that you’re a registered voter — if you are. If you’re not, it’s time to register. Go to: http://www.sos.ca.gov/elections/elections_vr.htm

Thank you for your advocacy.

Greg

P.S. Your probably noticed a new banner at the top of this Action Alert. That’s because United Cerebral Palsy and The Arc have joined forces to strengthen our community’s voice in California public policy struggles. Just in time, don’t you think?

Greg deGiere
Public Policy Director
The Arc and United Cerebral Palsy in California
1225 Eighth Street, Suite 350
Sacramento, CA 95814
(916) 552-6619 x16

Prof. Paul Shattuck discussing his paper on lack of services for young autistic adults

9 Feb

I recently posted the press release for Prof. Shattuck’s latest paper. At the time, the video was only on his university’s webpage. Now that the video has been posted to YouTube, I can embed it and you can hear Prof. Shattuck telling you about the important points himself:

I apologize that there do not appear to be an option for subtitles.

GI and autism studies ‘none of these trials appeared to be of high quality’

8 Feb

A new paper is due out soon looking at the available literature on GI and autism.

The significance of the association between many gastrointestinal (GI) pathologies and autism has yet to be discovered. The aim of the present study was to review available evidence documenting any link between autism and GI histopathology in children

I’ve only got the abstract to go by but even that is fairly damning.

Eight studies have reported the histopathological features of the GI tract in children with autism and fulfilled inclusion criteria. In general, none of these trials appeared to be of high quality. Apart from intestinal lymphonodular hyperplasia, the majority of these findings were not consistent….GI pathological findings in children with autism have been inconsistent. The present available evidence does not support or refute a link between GI histopathology and autism in children. The significance of intestinal lymphonodular hyperplasia in these children is unknown.

I’m hoping to get the full paper soon. It would be interesting to know what these eight studies were.

Update

Here’s the eight papers of low quality:

Furlano RI, Anthony A, Day R, et al. Colonic CD8 and gamma delta Tcell
infiltration with epithelial damage in children with autism. J Pediatr
2001;138:366–72.

Wakefield AJ, Anthony A, Murch SH, et al. Enterocolitis in children
with developmental disorders. Am J Gastroenterol 2000;95:2285–95.

Torrente F, Ashwood P, Day R, et al. Small intestinal enteropathy with
epithelial IgG and complement deposition in children with regressive
autism. Mol Psychiatry 2002;7:375–82. 34.

Ashwood P, Anthony A, Pellicer AA, et al. Intestinal lymphocyte
populations in children with regressive autism: evidence for extensive
mucosal immunopathology. J Clin Immunol 2003;23:504–17.

Ashwood P, Anthony A, Torrente F, et al. Spontaneous mucosal
lymphocyte cytokine profiles in children with autism and gastrointestinal
symptoms: mucosal immune activation and reduced counter regulatory
interleukin-10. J Clin Immunol 2004;24:664–73.

Wakefield AJ, Ashwood P, Limb K, et al. The significance of ileocolonic
lymphoid nodular hyperplasia in children with autistic spectrum
disorder. Eur J Gastroenterol Hepatol 2005;17:827–36.

Torrente F, Anthony A, Heuschkel RB, et al. Focal-enhanced gastritis in
regressive autism with features distinct from Crohn’s and Helicobacter
pylori gastritis. Am J Gastroenterol 2004;99:598–605.

14. DeFelice ML, Ruchelli ED, Markowitz JE, et al. Intestinal cytokines in
children with pervasive developmental disorders. Am J Gastroenterol
2003;98:1777–82.

No surprises there.

Recent autism prevalence studies point to variability in methodology and bias

8 Feb

In Prevalence of autism spectrum disorders and influence of country of measurement and ethnicity , the authors look at ASD prevalence by country and ethnicity. They hypothesize that “methodological factors, socioeconomic variables, and bias” play a role in the variability in autism prevalence.

The disparities by geography and by ethnicity within the data reported within the U.S. has been a big concern of mine for some time. Clearly there is not an obvious difference between, say, New Jersey (with an estimated prevalence of 10.6/1,000) and Alabama (with an estimated prevalence of 6/1,000) to account for the large difference in estimated prevalence.

Background
The prevalence of autism spectrum disorders (ASD) is generally somewhat lower in countries outside of North America and Europe. While there are culture-specific patterns of social cognitive processing, the influence of such patterns upon ASD prevalence has yet to be fully explored.
Methods
A comprehensive literature search for original articles reporting ASD prevalence was undertaken. Data across studies were compared with a particular focus on variables of geographic residence and ethnicity.
Results
ASD prevalence varies across countries in a manner that appears to suggest that the greatest influence is due to methodological variables. The nature of a potential influence of culture-specific patterns of cognitive processing upon prevalence remains unknown. The available little data concerning the association between ethnicity and prevalence are limited to studies within the United States (US) showing differences in children of Hispanic descent relative to Whites, a finding for which a definitive explanation is lacking.
Conclusions
Available evidence suggests that methodological factors are largely responsible for differences in ASD prevalence across studies. The much discussed increase in prevalence in ASD has been observed worldwide, suggesting that the refinement of diagnostic methodology and/or broadening diagnostic concept is not limited to Western countries. Within individual countries, only in the US has the influence of ethnicity upon ASD prevalence been examined in depth. In the US, children of Hispanic descent have the lowest prevalence of ASD, while Whites tend to have the highest prevalence of ASD. Hypothesized etiological factors for such prevalence differences include methodological factors, socioeconomic variables, and bias.

In Racial Disparities in Community Identification of Autism Spectrum Disorders Over Time; Metropolitan Atlanta, Georgia, 2000-2006. African American (non Hispanic Black) students are less likely than Non Hispanic White students to be identified with “less severe” ASD’s. This even after controlling for socioeconomic status.

Racial Disparities in Community Identification of Autism Spectrum Disorders Over Time; Metropolitan Atlanta, Georgia, 2000-2006.

Jarquin VG, Wiggins LD, Schieve LA, Van Naarden-Braun K.

From the Division of Birth Defects and Developmental Disabilities, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA.
Abstract

OBJECTIVE: Past research indicates that non-Hispanic black (NHB) children are less likely than non-Hispanic white (NHW) children to have an autism spectrum disorder (ASD) diagnosis, even if they seem to meet criteria for the disorder. This study examined differences in community identification of ASDs between NHB and NHW children identified by a population-based surveillance system.

METHODS: Participants were identified as an ASD surveillance case by the Metropolitan Atlanta Developmental Disabilities Surveillance Program in surveillance years 2000, 2002, 2004, and 2006. Health and education records were abstracted and reviewed to determine ASD surveillance case status; community identification was defined by a documented ASD diagnosis, special education eligibility, and behaviors noted in records. Children were placed in 1 of 5 mutually exclusive categories on the basis of ASD specificity.

RESULTS: Total ASD prevalence was higher for NHW than NHB children, but NHB children were more likely than NHW children to have autistic disorder and autism eligibility at a public school documented in records. NHB children were less likely than NHW children to have pervasive developmental disorder-not otherwise specified and Asperger’s disorder documented in records, even after controlling for socioeconomic status. NHB children were more likely than NHW children to have co-occurring intellectual disability.

CONCLUSION: NHB children were less likely than NHW children to have been identified with less severe ASDs, which might have prevented or delayed intervention services that would have catered to their needs. This study illustrates the need for continued professional education, particularly concerning milder ASDs in minority groups.

As a society, we have decided that autistic students often need educational supports distinct from those of children with other disabilities. Clearly if we are to serve our students appropriately, we should be accurately identifying each student’s disability (where they exist). The fact that we are not uniform in identifying autistic students indicates that we have far to go in this regard.

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