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No, Wakefield’s Autistic Enterocolitis Does Not Exist

2 Sep

Listen to Andrew Wakefield talk for a while and he will tell you his work has been replicated. Usually claiming replicated multiple times and around the world. Since he says it, it gets repeated by his supporters in online discussions.

For those who get dragged into those discussions, here is another paper to reference. This one takes on the idea that there is a bowel disease specific to autism. Wakefield’s “autistic enterocolitis”

People have looked and, guess what, it isn’t there. Yes, autistics get bowel disease. Being autistic doesn’t prevent bowel disease. The fact that some do, indeed, get bowel disease isn’t what Wakefield claimed. He claimed a “new syndrome”.

It doesn’t exist.

Here’s the abstract. The group is reputable and, in fact, has expressed sympathetic views towards Wakefield.

Evaluation of Intestinal Function in Children With Autism and Gastrointestinal Symptoms.

OBJECTIVE:
Alterations in intestinal function, often characterized as a “leaky gut,” have been attributed to children who are on the autism spectrum. Disaccharidase activity, intestinal inflammation, and permeability were analyzed in 61 children with autism and 50 nonautistic individuals with gastrointestinal symptoms.

METHODS:
All patients had duodenal biopsies assayed for lactase, sucrase, maltase, and palatinase activity. Intestinal permeability was evaluated by rhamnose/lactulose test and measured by high-performance liquid chromatography-mass spectrometry. Intestinal inflammation was evaluated by fecal calprotectin and lactoferrin levels using enzyme-linked immunosorbent assay and histology.

RESULTS:
Some children with autism had mild levels of mucosal inflammation on intestinal biopsy. Disaccharidase activity was not different in autistic and nonautistic individuals. Fecal calprotectin and lactoferrin were similar in both groups. Differences between lactulose and rhamnose recovery and lactulose/rhamnose ratio in urine were not statistically different in patients with and without autism.

CONCLUSIONS:
The present study supports the observation that children with autism who have symptoms of gastrointestinal disorders have objective findings similar to children without autism. Neither noninvasive testing nor endoscopic findings identify gastrointestinal pathology specific to autism, but may be of benefit in identifying children with autism who have atypical symptoms.

If you are getting ready to write, “but they might not have seen enough kids to find one with autistic enterocolitis”, according to Wakefield, most of the kids his team tested had his “new syndrome”. If that were true, this team would have found it.

Add this to “MMR causes autism” as one of the failed ideas of Andrew Wakefield. Not that he will ever admit it.


By Matt Carey

If you are using California data to claim an autism epidemic, you’re doing it wrong. Or:The great anti-epidemic of intellectual disability in California.

22 May

If you’ve been reading about autism online, you have almost certainly read that autism “rates” are on the rise. But what if I told you that here in California intellectual disability has been dropping for over 20 years?

For many years the mainstay of the “autism is an epidemic” idea was the California Department of Developmental Services data. The CDDS keeps track of how many Californians are getting support under a number of specific disability categories. These data are publicly available (although not as easily available in the past), which makes them an easy source of data.

It’s easy to take a cursory look at the CDDS data and think “these are official data. Look at how much autism has increased!” Or claim “the CDDS only serves “severe” autism, there’s no way they were missed in the past.” You can even find a few publications to cite to back up these observations.

About a year ago I asked CDDS for some data. I hadn’t checked in a while and I wanted to see what trends are ongoing. Coincidentally, the Autism Society of San Francisco put out a report shortly after that: Autism Rising, A Report on the Increasing Autism Rates in California. So I was not alone in asking for data.  The Autism Society of San Francisco made the argument that the CDDS data are accurate and show an epidemic.

The Autism Society of San Francisco graph the data in many different ways, but the one that was closest to the way I was looking at the data was in Figure 5 (click to enlarge):

AS-SF Autism Rising Figure 5

and here is the caption for Figure 5:

Births of individuals later deemed to have DDS-eligible autism have been increasing sharply every year since the early 1980s. Typically intake into the system occurs between 2 and 7 years of age. The data reflects about 200 DDS autism births per year into the 1980s, but now the system is reflecting nearly 5,000 such births per year. The drop off in cases after birth year 2008 is likely attributable to usual delay in cases entering the system, and likely does not represent an actual decrease in DDS-eligible autism cases.

You can stop there and support your argument. And that’s just what most people do. Or you can question–how can I test if this is a “real” autism increase? For example, is the autism rate the same among different races? The answer is no. Is the autism rate the same in, say, San Francisco, Los Angeles, and Kern County? The answer is no. And there are many more questions one can ask of these data and over and over, the answer is no.

Either we aren’t counting all the autistics in our state, or there is something much more complex going on than vaccine, toxins, epigenetics, or whatever the claimed causes of the rise are. And I’ve gone through many of these discussions over the years. Let’s make this simple then. If one claims that the CDDS counts everyone within each disability category accurately and that the definitions they use aren’t changing with time, why is intellectual disability (mental retardation) dropping so fast in California?

You see I also graphed intellectual disability. I got autism counts, intellectual disability counts and “unduplicated” (total, each disabled person counted once) by birth year. I also got census data by birth year. And I graphed them. And anyone claiming CDDS data show an autism epidemic needs to do the same and to explain this graph, complete with the sharp peak for birth year 1993. (click to enlarge):

CDDS including ID

Intellectual disability has dropped. Off about 40% of the peak value.

If you think your idea for the rise in autism is correct, let’s take the failed vaccine idea as an example, you need to also explain how that resulted in far fewer people with intellectual disability. Plain and simple. And none of these claimed causes of an “epidemic” can explain the drop in ID.

Why bother challenging the people claiming an autism epidemic? Because it denies the existence of undiagnosed autistic adults. We have very little effort to identify those who were missed in past generations. And the likelihood is that these people–our people–are not being supported appropriately because of their misdiagnoses. And not only are we abandoning the misdiagnosed, we are failing to learn. What worked for past generations, the adults of today? What failed? What are the appropriate supports for the various needs of autistic adults? We don’t know today. And are unlikely to know by the time my kid is an adult, especially if we aren’t even looking at autistic adult needs today.

And then there’s the whole autism causation question. People spending their time trying to correlate CDDS data–data clearly confounded by numerous social influences–are unlikely to ever find a real answer.

But, for those who want to keep trying, include all the data. Give an explanation for this and you may be on to something.

CDDS including ID

By Matt Carey

IMFAR (the International Meeting For Autism Research) starts tomorrow.

11 May

IMFAR is the world’s largest autism science conference. I don’t recall the exact statistics, but there are probably over 1000 researchers who attend. Literally hundreds of presentations on various topics. I am not attending, but I will try to write a few articles about abstracts and topics that I think of are interest.

I do know that this year Shannon Rosa (twitter: @shannonrosa) and Carol Greenburg will be attending and tweeting and probably putting some thoughts up at the Thinking Person’s Guide to Autism (twitter: @thinkingautism, Facebook and the TPGA blog.

IMFAR shows what a huge effort is going on in autism research. People are working hard to understand autism and (more importantly) make a difference in the lives of autistics.


By Matt Carey

U.S. announces 2% autism rate. Again. And it’s dependent on a change in the way a survey is worded. Again.

17 Nov

Last week a study was released showing an autism “rate” in the U.S. of about 2% (an estimated prevalence of 2.24% to be exact). Luckily one of the best science journalists out there focuses a lot of her attention on autism and covered this story. I’m writing of course about Emily Willingham and her article Increase In Autism Diagnoses Not An Increase In Autism.

The study in question is Estimated Prevalence of Autism and Other Developmental Disabilities Following Questionnaire Changes in the 2014 National Health Interview Survey. The abstract is at the bottom for those interested.

While other articles are discussing the large “increase in autism”. Or, as in this Reuters article, US autism numbers soar in which we read what must be a confusing message to many:

The results reflect a near doubling in autism rates over the past three years, but the US Centers for Disease Control, which released the data last week, says the shift is largely due to a change in the way the survey was worded.

Here’s the thing, before I saw what the study was, I actually thought that the discussion was about this study: Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011–2012. In that study, released in 2013, a 2% autism “rate” was announced. And that was a significant change from the previous survey data (using the National Survey of Children’s Health). And like previous estimates based on survey’s the change is at least due in large part to a change in the way the survey was presented to parents (I’m looking for a link to the discussion of the change in survey questions that affected the 2013 estimate, but there was a shift and it had a big impact).

Thankfully much of the media, and even Autism Speaks, are pointing out how this 2% figure doesn’t represent a “real” change in autism prevalence, but is largely dependent on the study methods. Others can be counted on to shout “epidemic” and ignore some of the key reasons why this doesn’t reflect a real increase.

Number 1 reason–the autism prevalence is basically the same for kids who were 3-10 and kids who were 11-17:

AutPrevalence

A real increase would show up as a higher prevalence for younger kids.

One thing we see is a decrease in disparity for autism prevalence by race/ethnicity. African Americans have a slightly lower autism prevalence (it’s unclear whether this is statistically significant or not), and Hispanics have a decidedly lower autism prevalence (1.49% vs. 2.55% for Caucasians). Which means we still have far to go to identify and bring services to all autistics. And it also means that the autism prevalence estimates will continue to rise as we do identify more in under diagnosed populations.

AutPrevalence race-ethnicity

But let’s focus on the important part of that–we still have a large under-diagnosed/under-served population and it is largely among Hispanics. We really need to be focusing more attention on remedying that situation.

Here is the abstract for the current study:

Objectives—The developmental disabilities questions in the 2014 National Health Interview Survey (NHIS) were changed from previous years, including
question reordering and a new approach to asking about autism spectrum disorder (ASD). This report examines survey-based estimates of the lifetime
prevalence of ASD, intellectual disability (ID), and any other developmental delay (other DD) following the inclusion of a standalone ASD question, the
inclusion of specific diagnoses in the ASD question, and the ASD question preceding the other DD question, and compares them with estimates from
previous years.

Methods—In NHIS, one child is randomly selected from each family to be the subject of detailed questions on health conditions, functional limitations, and
health care utilization. Parents are asked if a doctor or health professional had ever told them that their child had each of a series of developmental disabilities.
Prevalence estimates of ASD, ID, and other DD for children aged 3–17 years were calculated using data collected in 2011–2014.

Results—The estimated prevalence of ASD based on 2014 data was 2.24%, a significant increase from the estimated annualized prevalence of 1.25% based on
2011–2013 data. In contrast, the prevalence of other DD declined significantly from 4.84% based on 2011–2013 data to 3.57% based on 2014 data. The prevalence of ID did not significantly change from 2011–2013 (1.27%) to 2014 (1.10%). The prevalence of having any of the three conditions was constant across survey years.

Conclusions—The revised question ordering and new approach to asking about developmental disabilities in the 2014 NHIS likely affected the prevalence estimates of these conditions. In previous years, it is likely that some parents of children diagnosed with ASD reported this developmental disability as other DD instead of, or in addition to, ASD. Following these changes, the 2014 ASD estimate was more similar to ASD prevalence estimates from other sources.


By Matt Carey

Secretary Burwell it is beyond unacceptable that there is no seated IACC

24 Oct

In the U.S. we have a promise from our government to focus attention on autism and to include community participation in that effort. There is a law in fact (Public Law No: 113-157) although you may think of it as the Autism CARES Act or the previous bills (the Combating Autism Act and the Combating Autism Reauthorization Act).

That law stipulates that the Secretary of Health and Human Services shall appoint a committee:

Establishment.–The Secretary shall establish a committee, to be known as the `Interagency Autism Coordinating Committee’ (in this section referred to as the `Committee’), to coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder.

This Committee, the IACC, has specific annual deliverables such as a Strategic Plan for autism research and an update of advances in autism research. The Committee is required to include non Federal Government members including autistics, parents and members of large non-government autism organizations. Regular meetings are to be held and public input solicited.

And none of this is happening.

With the new law required more from the government. For example, a report on autistics transitioning out of school. While the law doesn’t require direct IACC input in this, that would be the natural way to bring public input into that report (and to make sure that report is, indeed, being produced). Would you like to see that the report includes the needs of students transitioning to high support living placements? Or those who are in need of job support? Would you like to know that medical issues are being addressed? Would you like to have your voice heard at all in this process?

Well, as of now, it isn’t happening.

And there is no reason for that.

Let me repeat this: there is NO REASON that an IACC isn’t in place right now. And it was not Congress’ intent that there be a gap in IACC activity when they drafted this law. Consider this paragraph from the House report that was produced with the bill. The Congressional Committee that drafted the bill stated:

The Committee appreciates the diverse makeup of IACC, and would like the panel to continue to represent the diversity within the autism community and remain a place where all viewpoints can be heard. Current members include parents and legal guardians, individuals with an autism diagnosis, advocacy organizations, and medical researchers. The Committee believes that these groups should continue to be represented. After previous reauthorizations of the Combating Autism Act, IACC has been dissolved and reconstituted. The Committee believes that this is unproductive and disruptive, and would like IACC to remain active, as the changes in this bill are instituted to ensure continuity.

Let’s get a little into the details here. The previous IACC was dissolved at the end of September, 2014. This is the date stipulated in the law as enacted in the Combating Autism Reauthorization Act (CARA). All well and good except for one very important point: the provisions under CARA were superseded by Autism CARES Act before the sunset of the IACC.

In other words, the law as in place in September 2014 did not call for the IACC to be disbanded. I will state that I was the only member of the IACC to voice opposition to being disbanded. The intent and the wording of the law was clear to me: there was no reason for us to disband.

Even if I am completely wrong about that, there is no reason why a new Committee has not been formed. Consider the last time an IACC was dissolved and reformed.

Committee dissolved in September of 2011. The law in place at the time stipulated this. The reauthorization was signed into law the next day.

The new committee (of which I was a member) was announced at the end of March 2012. Yes, six months passed without a committee being in place.

The new committee did not meet until July of 2012. Yes, over eight months after the previous IACC was dissolved. Consider that the previous full meeting was in July of 2011 and you see that a year had passed without a meeting.

That was unacceptable.

And that was nothing compared to the situation we have today. The last IACC was dissolved at the end of September 2014. Over a year ago. And the last full committee meeting was in July of 2014. If a new IACC were announced today, given the time that it takes to organize meetings, we wouldn’t likely see a new Committee meet until February of 2016 at the earliest.

At best, we’ve lost about 2 years. At best.

The Strategic Plan that is in place today is outdated. The goals and strategies outlined in it have deadlines that have already passed. No annual autism research updates have been provided to Congress for 2014 or 2015. No advice has been provided to the Secretary.

Public input has not been heard by decision makers who are members of the IACC. And that is one of the greatest losses.

And now consider this: Autism CARES is an example of a “single disease” bill. Leaving aside the term disease, it’s worth noting that this sort of legislation is quite unpopular now in Congress. As a community we are lucky that we have this in place to focus federal attention and funding on autism. Congress promised funding and asked for some small things in return: a committee and annual reports from that committee.

I worry that by not seating a new committee we endanger the chances for a future re-authorization. If the Secretary (and we as a community) don’t seem to care about the existence of the Committee, what message is being sent to Congress?

In case you are wondering how valuable the IACC is–the IACC has acted as a model for other advocacy communities in terms of providing for public/federal partnership in crafting Federal strategies. There a many groups that would gladly take on an IACC type committee for themselves.

The IACC is a part of the framework that Congress promised to our communities. Promised and legislated. As I say above, it is beyond unacceptable that no Committee is currently in place.


By Matt Carey

Autism Speaks founder Bob Wright’s opinion is more important than science

24 Sep

Last year the Chief Science Officer of Autism Speaks made a simple and clear statement

“Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism.  The results of this research are clear: Vaccines do not cause autism.  We urge that all children be fully vaccinated.”

It was nice to finally see someone from Autism Speaks make a clear statement without a lot of equivocation and “leave the door open” language.

But what I think is nice and what Bob Wright, the founder of Autism Speaks, thinks is nice are two different things.  The Wright family is, at least, sympathetic to the idea that vaccines cause autism (and, in at least one case, very outspoken on the idea.)  So perhaps I should have been surprised when Autism Speaks put on their website Rob Ring’s statement together with a statement by Bob Wright.

Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism.  The results of this research are clear: Vaccines do not cause autism.  We urge that all children be fully vaccinated.
Rob Ring
Chief Science Officer, Autism Speaks
Over the last two decades extensive research has asked whether there is any link between childhood vaccines and autism. Scientific research has not directly connected autism to vaccines. Vaccines are very important. Parents must make the decision whether to vaccinate their children. Efforts must be continually  made to educate parents about vaccine safety. If parents decide not to vaccinate they must be aware of the consequences in their community and their local schools.
Bob Wright
Co-founder, Autism Speaks
Because why should we let the Chief Science Officer have the actual word on what Autism Speaks thinks about an issue of science?  Why let a clear statement stand alone when one can leave the door open with “Scientific research has not directly connected autism to vaccines.”
And that was sad.  A sad move by Autism Speaks.  A sad move by Bob Wright.
But I’ve already written about that.  Why bring it up again now?  Well, because a reader here alerted me to the fact that Bob Wright and Autism Speaks have expunged the statement by their science officer. If one now goes to https://www.autismspeaks.org/science/policy-statements/information-about-vaccines-and-autism, one finds only Bob Wright’s statement:
AS backpedals on vaccines
I so want Autism Speaks to be an organization I could support.  And sometimes they seem to be moving in that direction.  But, in the end, they are still clinging to ideas like “vaccines cause autism”, ideas that cause a lot of harm within the autism communities.  And they also take a very stigmatizing approach to the discussion of autism, but that is another discussion.

Autism Speaks pretends to be a science driven organization, but they just aren’t.  The founder is the founder and his opinion means more than the results of scientific studies as expressed by their own Chief Science Officer.

By Matt Carey

Cochrane review: no clinical trial evidence was found to suggest that pharmaceutical chelation is an effective intervention for ASD

10 Sep

Chelation was never used by the majority of parents on their autistic kids. And that is a good thing. Chelation use is way down in the autism communities, but it hasn’t gone away. Many of those who use chelation are also vaccine antagonistic, and many of those rely upon the Chochrane reviews to support their vaccine-antagonistic arguments (generally by cherry picking and misrepresenting the Chochrane reviews). So, I was intrigued when I saw this abstract come up recently: Chelation for autism spectrum disorder (ASD).

A Chochrane team looked at the evidence for chelation and found that there is none.

A while back there was a plan for a chelation trial at the National Institutes of Health. It was cancelled when animal studies found a drop in cognitive scores when chelation was used without heavy metal intoxication. Which is to say, if you chelate someone needlessly, you could be shaving off IQ points. And since there is no evidence that autism is a form of heavy metal intoxication, chelation may actually have been harming already disabled kids.

I bring this up because the Chochrane review mentions a possible clinical trial in their last abstract sentence: “Before further trials are conducted, evidence that supports a causal link between heavy metals and autism and methods that ensure the safety of participants are needed.”

Yeah, I know that teams of people with MBA’s and other non-related degrees will tell you that there is evidence. As will doctors who sell chelation. Or recommend it (Hello, Dr. Bob Sears, I’m talking to you and your community of non-autism docs). They are wrong. And potentially harming autistic children.

Here is the abstract

Abstract
BACKGROUND:
It has been suggested that the severity of autism spectrum disorder (ASD) symptoms is positively correlated with the level of circulating or stored toxic metals, and that excretion of these heavy metals, brought about by the use of pharmaceutical chelating agents, results in improved symptoms.
OBJECTIVES:
To assess the potential benefits and adverse effects of pharmaceutical chelating agents (referred to as chelation therapy throughout this review) for autism spectrum disorder (ASD) symptoms.
SEARCH METHODS:
We searched the following databases on 6 November 2014: CENTRAL, Ovid MEDLINE, Ovid MEDLINE In-Process, Embase,PsycINFO, Cumulative Index to Nursing and Allied Health Literature (CINAHL) and 15 other databases, including three trials registers. In addition we checked references lists and contacted experts.
SELECTION CRITERIA:
All randomised controlled trials of pharmaceutical chelating agents compared with placebo in individuals with ASD.
DATA COLLECTION AND ANALYSIS:
Two review authors independently selected studies, assessed them for risk of bias and extracted relevant data. We did not conduct a meta-analysis, as only one study was included.
MAIN RESULTS:
We excluded nine studies because they were non-randomised trials or were withdrawn before enrolment.We included one study, which was conducted in two phases. During the first phase of the study, 77 children with ASD were randomly assigned to receive seven days of glutathione lotion or placebo lotion, followed by three days of oral dimercaptosuccinic acid (DMSA). Forty-nine children who were found to be high excreters of heavy metals during phase one continued on to phase two to receive three days of oral DMSA or placebo followed by 11 days off, with the cycle repeated up to six times. The second phase thus assessed the effectiveness of multiple doses of oral DMSA compared with placebo in children who were high excreters of heavy metals and who received a three-day course of oral DMSA. Overall, no evidence suggests that multiple rounds of oral DMSA had an effect on ASD symptoms.
AUTHORS’ CONCLUSIONS:
This review included data from only one study, which had methodological limitations. As such, no clinical trial evidence was found to suggest that pharmaceutical chelation is an effective intervention for ASD. Given prior reports of serious adverse events, such as hypocalcaemia, renal impairment and reported death, the risks of using chelation for ASD currently outweigh proven benefits. Before further trials are conducted, evidence that supports a causal link between heavy metals and autism and methods that ensure the safety of participants are needed.


By Matt Carey