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MMS, Miracle Mineral Solution, CD, Chlorine Dioxide…call it what you will, it’s abusive and it’s fake medicine

3 Jan

I’ve written a few times about MMS. Rather than the long articles on specific topics, I feel it’s appropriate to make a simple, short statement:

MMS, aka Miracle Mineral Solution, aka CD, aka chlorine dioxide is bogus. It’s junk. Worse than that, it’s abusive. Yes, you will find segments of the autism-parent community who promote and use it. But that doesn’t make it actually useful, nor does it make it OK to use.

Here’s the thing–it’s a bleach solution. The idea that this can work to “detoxify” or “kill parasites” is just flat out wrong.

The Autism Research Institute (ARI), a group which has promoted unproven alternative treatments for autism throughout its history, has this to say:

Given these issues, we advise against using MMS at this time. We hope parents will remain critical of unsubstantiated claims that children have recovered or greatly improved in the absence of objective proof. We also strongly encourage any parents who choose to administer MMS to their children to report it to their physician so that side effects can be monitored.

If a group such as ARI, a group favorable to alt-med, comes out with such a strong statement, you know it’s time to question the “scientific” claims and testimonials.

As to why I call this abusive? Used as an enema (one method strongly promoted by MMS activists) it causes people to pass the lining of their intestines. You can find pictures of these “worms” on the web, where people claim they have killed a parasite. (This is just the worst use of MMS. Taken orally it is still abusive).

Again, from the ARI:

The mucous threads that children expel during MMS treatment, which have been touted as worms (though laboratory analysis does not support this claim), are the body’s method of protecting itself from induced oxidative stress in the lower digestive tract equivalent to the mid-day sun in its ability to produce severe sunburn.

Seriously, what else can one call pushing chemicals into disabled children’s digestive tracts until they start passing tissues? Yes, parents subjecting their children to this are not doing so with the intent to abuse, but they are being fooled into a harmful act.

Since I keep getting commenters on this blog defending this practice, I felt the need to make this short and clear statement. MMS is bogus. It’s harmful.

Just don’t do it.

By Matt Carey

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Here’s one part of Brian Hooker’s “reanalysis” that shows just how cynical the anti vaccine movement is

18 Dec

When my kid was diagnosed autistic I started reading research papers (I am a Ph.D. researcher by profession) and the raw data. One thing that struck me immediately was the fact that minority children are much less likely to get a diagnosis than white kids. And minority kids are diagnosed later.

This inequity really bothers me. Accurately identifying the needs of a disabled child can focus the appropriate therapies and supports on that child. The need to rectify this inequity is 100% accepted within the autism advocacy and research communities.

This inequity poses a problem to people who claim that autism is an “epidemic”. If we are not identifying all the autistics in any given group (we aren’t), autism prevalence numbers are inaccurate. Being inaccurate, how does one compare, say, one CDC prevalence number with one 2 years later and claim a “real” increase?

One can’t. Plain and simple.

So, for years, groups like those promoting the idea that autism is caused by vaccines have not only ignored this inequity, they have actively denied it. They are stuck between accepting that the data can’t show an epidemic, or accepting that minorities have some sort of protection from this supposed “autism as vaccine injury”.

When was the last time you read something from, say, the Age of Autism blog or Andrew Wakefield calling for efforts to end this inequity? You haven’t. They don’t do it. When have you heard from someone like Brian Hooker that we should study minority populations to see what “protects” them from “vaccine injury”? You haven’t.

Who is Brian Hooker? Brian Hooker is a parent of an autistic child. Brian Hooker strongly believes that vaccines cause autism. He can back this up with his observations of his child’s development. Observations which are contradicted by his child’s medical records. I discussed this before as Double checking Brian Hooker’s story in VAXXED. A Special Master (a judge in the vaccine court) put it very strongly:

After studying the extensive evidence in this case, I am convinced that the opinions provided by Petitioners’ experts in this case, advising the Hooker family that there is a causal connection between SRH’s vaccinations and either the initial causation or aggravation of SRH’s ASD, were quite wrong.

In the original, the Special Master emphasized “quite wrong“.

So, we have someone who believes vaccines cause autism to the point of ignoring the facts in front of him.

A few years ago Mr. Hooker “reanalyzed” some data from an old CDC study, suggesting that evidence showed that the MMR vaccine might increase risk in African American boys. That was discussed in great detail here and elsewhere. (for example: Brian Hooker proves Andrew Wakefield wrong about vaccines and autism and MMR, the CDC and Brian Hooker: A Guide for Parents and the Media).

Mr. Hooker’s study was retracted. In the research world thats a big deal. As in, embarrassingly bad.

Recently, as in 4 years after his original study, Mr. Hooker republished his “reanalysis”. In the Journal of American Physicians and Surgeons. I’d be completely embarrassed to have a paper in that journal, to be blunt. A lengthy discussion of this reappearance of the study can be found at Respectful Insolence as Brian Hooker’s antivaccine pseudoscience has risen from the dead to threaten children again.

Let me just focus on how Mr. Hooker, in my view cynically, abuses the African American community in order to attack vaccines. From the website of an organization Mr. Hooker belongs to (the ironically–to be polite–named “Children’s Health Defense”), we read this:

Main Points from Reanalysis:

The rate of autism diagnoses has increased alarmingly in the U.S., and is about 25 percent higher in black children. Boys are far more likely than girls to receive this diagnosis.

This is not only wrong, it’s wrong in a way that points to incredible dishonesty.

This first point is that autism is about 25% higher in black children. A “main point from the reanalysis”.

Tell me, when you read that did you think, “this study found that autism is more prevalent in African American children”? If so, you were misled. The 25% higher prevalence is from a different study than Hookers. And that other study says something completely different.

From the Hooker study:

However, one study showed that prevalence of autism in African-Americans was approximately 25% higher than that of whites when the data were adjusted for socioeconomic factors[7].

Reference [7] is Socioeconomic inequality in the prevalence of autism spectrum disorder: evidence from a U.S. cross-sectional study.

The Socioeconomic Equality study states:

Also notable is that, although the overall ASD prevalence was higher among non-Hispanic White and Asian children than among non-Hispanic Black or African-America and Hispanic children, when the results were stratified by SES, we saw that the racial/ethnic differences in prevalence varied by SES (Table 3). The lower prevalence among non-Hispanic Black or African-American and Hispanic children was seen only in the low SES category, and the fact that more non-Hispanic Black or African-American and Hispanic children live in poverty contributed to the lower overall prevalence among these groups.

Emphasis mine. Overall ASD prevalence was lower for African American children. Not 25% higher. This lower prevalence was due to lower socioeconomic status. I.e. poverty.

Want to see this a different way? Here’s a figure from the paper (click to enlarge):

The overall prevalence in White non-Hispanic kids was 6.9/1000. For black non-Hispanic kids it was 5.7/1000. About 20% lower. Not 25% higher as Mr. Hooker claims.

Fewer African American kids are getting autism services. Not because they aren’t autistic, but because their poverty keeps them from getting a diagnosis.

This is something we should be working towards fixing. No question. But don’t look to the anti-vaccine community to care or act. It’s an inconvenient fact for their epidemic story.

I guess he has such a low level of respect for the people in his own community (those who believe vaccines cause autism), that he thought no one would check this.

By the way, this paper isn’t the only one that shows a lower autism prevalence among African Americans. You know those CDC autism prevalence reports that come out every two years? Every single one has reported a lower prevalence among African Americans. Every one.

Here’s a line from the latest report:

Previous reports from the ADDM Network estimated ASD prevalence among white children to exceed that among black children by approximately 30% in 2002, 2006, and 2010, and by approximately 20% in 2008 and 2012.

When I saw the claim on Hooker’s organization’s website I figured he must have cherry picked a study that shows what he needed to make his story work. It’s just such common knowledge in the autism community that African Americans get diagnosed less frequently. It’s in every CDC report. I didn’t know he wasn’t cherry picking, he was just misrepresenting the study entirely.

I discuss this as a scientist. He “misrepresented the study”. My father had a word for that sort of behavior: lying.

OK, Brian. You’ve read the studies and decided to do nothing about the fact that many autistic African American kids aren’t getting identified and getting appropriate services. I get that, you have your own cause. But, really, is that community so much of a nothing to you that you can just use them like this? I ask rhetorically. You and your community have always acted with callous disregard.

I once had hope that as it because completely obvious that you and your community were wrong (and that was many years ago), you’d join the actual autism community and put your advocacy to use. I now know that will never happen. And, frankly, we don’t need dishonest people.


By Matt Carey

Why autism at 2.5% isn’t surprising.

29 Nov

Let’s get one thing out right away–autism prevalence studies undercount. Not all autistics are diagnosed. That’s just a fact. Consider the recent CDC study. They look at school and medical records. In many cases, they find children are autistic based on their records–but the schools and doctors hadn’t diagnosed those children.

Combining data from all 11 sites, 81% of boys had a previous ASD classification on record, compared with 75% of girls (OR = 1.4; p<0.01).

Yeah, more than 20% of the kids counted in their prevalence had no diagnosis. They and their families didn’t know.

And, if there isn’t enough in the records to show a kid is autistic? That kid gets uncounted altogether.

So, when people look at the CDC prevalence estimates from over the years and cry “epidemic”, well, there’s a reason why those people usually have some causation theory that they believe in. The irony is that they are usually wrong that their theory needs an epidemic to support it. But, heavily biased people are not usually the best sources of reliable analyses.

What would be a better method of counting how many autistics are in a population? Sounds obvious–test all the kids in a given population. Equally obvious–this is a much more expensive and difficult task. One such study was published in 2011. Yes, 7 years ago. In Prevalence of autism spectrum disorders in a total population sample, the autism prevalence in Korea was found to be 2.63%. A study performed in South Carolina and reported at IMFAR last year found a prevalence of 3.62%.

This all said, we had another autism prevalence come out this week–The Prevalence of Parent-Reported Autism Spectrum Disorder Among US Children. This study found a prevalence of 2.5%.

Now here’s a nice thing about this recent study–OK, two nice things. First, they don’t just look at kids of one age. Second, you can obtain the data. Which I did. Let’s look at the autism prevalence broken down by birth year.

Do you see autism prevalence increasing with birth year? I don’t. I see some scatter, but in general the autism prevalence is about 2.5% from birth year 2000 to 2010. For what it’s worth–the scatter is due to the small numbers of kids in each year making the value uncertain. It’s statistical noise.

If you are wondering about how the autism prevalence drops off above birth year 2010, keep this in mind: kids aren’t diagnosed at birth. In the CDC study, 1/2 of the kids didn’t get diagnosed until after 52 months (4 years 4 months) of age. For this type of reason, the more recent study didn’t count kids under 3 years of age.

People are very fond of graphing autism prevalence data from various years and claiming these are accurate, full counts of autism prevalence (they aren’t) and, from that, claiming an epidemic. Here are the CDC data:

The numbers go up. Steadily up. I’d have to be a total denialist to not see that as evidence of an epidemic, right?

Consider this–the CDC autism prevalence for birth year 2000 is 1.1%. The study just out gives an autism prevalence more than double that (2.9%). For the same birth year. Both are good studies, for what they are. Both are limited. But, for one thing, the CDC study was performed in 2008. 10 years ago. Since then a lot has changed. For one thing, the kids got older and had more chances to get diagnosed. They didn’t just suddenly become autistic in the past 10 years.

So, yeah, we have an autism prevalence estimate of 2.5%. I’m not surprised and I’m not taking this as evidence of an epidemic.

The unfortunate thing in this discussion is that with all the work in this study, all the potential for advocacy, the only number that usually gets discussed is the overall prevalence. Watch the video abstract (which I can’t get to embed). One of the authors goes into a lot of detail about the other findings. Findings I hope to discuss soon.

//players.brightcove.net/1327978102001/rkA3rSifl_default/index.html?videoId=5839990273001

By Matt Carey

Proud of You

16 Nov

I had the privilege of presenting a second piece on KQED Radio’s Perspectives. The piece, Proud of You, aired earlier this week. The audio is on KQED’s site.

When we were expecting our son a doctor told us he would be very disabled. I had feared hearing that and yet I had never prepared myself. I didn’t even know what questions to ask. After many sleepless nights the question came to me. I called a friend of mine whose daughter is disabled and asked simply, “Is she happy?” Yes, he told me, she is generally happy.

I didn’t know whether my son would be able to be happy. In our society we often equate disability with unhappiness.

A few days later we learned this was a misdiagnosis.

When my son was two we realized he was disabled, for different reasons. There were suddenly far too many things to do than we could manage. But I never thought, “My son and I should set an example.”

I did want to make sure my son got out into the world. For him. I knew it would be very easy to retreat to our home. So we go into the community as often as we can.

People notice us. Once, a man approached us. He was very upset as he was trying to come to terms with his mother’s dementia. He saw a parallel between his mother and my son. And he noticed that my son and I very much enjoy our time together, even though we are very different.

My mother had recently passed away after years of dementia. I told my neighbor what I had learned from my son. This person in front of you is still a valid person. My son is very different from other children. My mother was different than she was when we were younger. But I learned to enjoy the time I have with the people in front of me rather than comparing them to some “normal” person.

I told my son, “I’m talking about you because I’m proud of you.”

People notice my son and me. Sometimes they see us struggle. Struggle hard. Often they see us enjoy our time together.

I don’t mind that people notice us. When they do, I remember when my friend helped me, when my son taught me to accept my mother. And I hope that our struggles and our joys set an example for others.

With a Perspective, this is Matt Carey.

Want to understand acceptance? Listen to I am what I am

8 May

This weekend I saw another production of La Cage Aux Folles. The song “I am what I am” has long been one of my favorites, and the lyrics are posted in my kid’s room. I’ve posted this before, with some explanation. This time, I invite you to listen, read the lyrics and, if you don’t understand why I feel this is so fitting: ask.

I am what I am
I am my own special creation.
So come take a look,
Give me the hook or the ovation.
It’s my world that I want to take a little pride in,
My world, and it’s not a place I have to hide in.
Life’s not worth a damn,
‘Til you can say, “Hey world, I am what I am.”
I am what I am,
I don’t want praise, I don’t want pity.
I bang my own drum,
Some think it’s noise, I think it’s pretty.
And so what, if I love each feather and each spangle,
Why not try to see things from a diff’rent angle?
Your life is a sham ’til you can shout out loud
I am what I am!
I am what I am
And what I am needs no excuses.
I deal my own deck
Sometimes the ace, sometimes the deuces.
There’s one life, and there’s no return and no deposit;
One life, so it’s time to open up your closet.
Life’s not worth a damn ’til you can say,
“Hey world, I am what I am!”


By Matt Carey

Did autism prevalence increase by 20%? (answer: no)

28 Apr

The CDC came out with a new autism prevalence estimate yesterday. Their estimated autism prevalence is 1.68%.  That’s up from the estimate from 2 years ago (1.46%), but lower than a different recent study (2.76%).

I’m going to discuss some minor-league shenanigans.  It’s no surprise that some groups abuse facts and cherry pick data to make political points.  In this case it was useless.  there was no need to cherry pick.  I’ve done a lot of exposing the abuse of facts by some so-called autism advocacy groups.  I don’t get any joy from noting that people in my community are both dishonest and ignorant of science.  But much as that bothers me, it pales in comparison to the lost opportunities.  Millions of dollars were spent on this prevalence estimate alone, but all some groups do is dig for reasons to justify their “epidemic” story and push the long-ago failed idea that vaccines are to blame.

Over the years, news organizations and autism groups have jumped at the chance to put their spin on each new CDC autism prevalence estimate. Over the years I’ve spent a lot of time trying to unspin the takes of groups like the Age of Autism blog. AoA is, well…if you want to see autism done wrong, read the Age of Autism blog. Science, medicine, human rights and dignity, they can be counted upon to get things wrong.

With that in mind I decided the CDC announcement was a time to break my current trend of ignoring AoA. I literally haven’t read it in months. What I saw was both surprising and typical for them. Surprising in that they didn’t even bother to write their own pieces for the new prevalence numbers. Seriously–they just copied a couple of articles from other sites and left it at that.

By the way–this new low-level interest in autism prevalence appears to me to be a general trend–beyond just AoA. Autism is losing it’s status as having intense focus from the US media and public.  The chance to leverage the public’s interest into meaningul change is waning. That’s a far more interesting topic and far more important than this and I want to come back to it in the future.

So, what did AoA post? Big League Politics BREAKING: CDC Reports 20 Percent Autism Increase In Children and Breaking News: 1 in 59 children Born in 2006 have Autism, 1 in 36 between the ages of 3 and 17. What’s going on?. That first one caught my eye. First because in absolute terms, the autism prevalence increased by 0.22%. In relative terms, that’s about a 15% increase.  They could have said 15% and made their point, but why do that when 20% is even more scary?  More to the point–digging just a little into this 20% figure gives understanding that a true advocacy organization could use.

So how did they come to the idea that the autism prevalence increased by 20%? They skipped to page 13 and took one part of one paragraph out of context and, well, cherry picked. Completely unsurprising. They skipped over pages of data showing that we are failing to identify–and, therefore provide adequate services for–autistic minority children.

Sadly, AoA and their allies have spent over a decade denying this huge issue.   The reason is obvious: it doesn’t fit into the “vaccines cause autism” narrative.  So rather than push for better identification and better services for minorities, they’ve sacrificed these communities in for their political message.

It’s disgusting.

They didn’t dig any deeper into these numbers, even though the data were right in front of them. Also completely unsurprising. If they were the sort of people who dig into data and question, they wouldn’t be pushing the idea that vaccines cause autism.   Seriously.

Here’s the section they are relying upon:

Among the six ADDM sites completing both the 2012 and 2014 studies for the same geographic area, all six showed higher ASD prevalence estimates for 2012 compared to 2014, with a nearly 10% higher prevalence in Georgia (p = 0.06) and Maryland (p = 0.35), 19% in New Jersey (p<0.01), 22% in Missouri (p = 0.01), 29% in Colorado (p<0.01), and 31% in Wisconsin (p<0.01). When combining data from these six sites, ASD prevalence estimates for 2014 were 20% higher for 2014 compared to 2012 (p<0.01).

So, if you only pick the states where there were data in both this study (called 2014 because that’s when the data were collected to be analyzed) and the previous (2012) study, you get about a 20% increase (click to enlarge).

But what happens if you ask “why?”  As in, why do these states show a larger increase than the entire group?

I put some numbers in red and bolded them for emphasis. Those are states with lower than average autism prevalences. Take a moment to think about that–the states with low autism prevalences are showing larger prevalence increases than other states. Start with a low number, and you are bound to get bigger percentage increases.

Missouri, Colorado and Wisconsin started out with very low identification rates.  They’ve improved their identification rates. What if someone were to ask, “how did they do that?  Can we use that elsewhere to serve more unidentified autistic children?”

I’m sure the cherry-picking “let’s find a reason to fit this into the vaccines-cause-autism story” groups have already focused on New Jersey in the above figure.  New Jersey stands out–their autism rate increased by about 19% and they have a much higher autism prevalence rate. New Jersey also stands out for another reason: they aren’t lagging in identifying black or Hispanic autistic children:

In New Jersey, there was almost no difference in ASD prevalence estimates among white, black, and Hispanic children. Estimates for Asian/Pacific Islander children ranged from 7.9 per 1,000 (Colorado) to 19.2 per 1,000 (New Jersey) with notably wide CIs.

Wouldn’t it be great if someone were to say, “how did New Jersey close the gap in identifying some minority groups?”

Groups advocating for a better future for disabled people would do that.  People trying to keep the failed “it’s all vaccines fault” idea alive won’t.

Some people will be confused, and understandably so, at this point.  These are “autism prevalence” numbers.  Doesn’t that mean that this is a complete and accurate count of the number of autistic kids in each location?  No, they aren’t.  The people at the CDC are working hard and doing a good job with the information they have.  But this is a review of existing records, not a test of each individual kid.  The CDC have access to medical and/or school records (it varies by location what sort of records they have).

Keep in mind–the CDC autism prevalence numbers aren’t “these are the absolute accurate numbers for how many kids are autistic”. We are missing identifying kids. Doctors are missing autistic kids.  Schools are missing autistic kids. The CDC tries to make up for this by reviewing the records to determine which kids are autistic (i.e. they don’t just count existing diagnoses in the records–they “diagnose” from the records).  But they still miss kids in their counts. We need to get better. The fact that New Jersey isn’t leaving minority kids behind is huge.  The fact that lagging states are catching up is huge.

Doing things right–checking on numbers is hard. It takes time. AoA not only doesn’t take the time to be careful (which is typical for the “vaccines cause autism” groups), they know that it’s the simple message that scares people. “Autism increased by 20%”!!!! It may only take 5 minutes to actually dig and see what’s going on. But that’s five minutes most people don’t have time for.

Which is the long winded way to say:

A lie can travel halfway around the world before the truth can get its boots on

Groups like AoA live and breathe on taking advantage of that.  They were fake news long before the term was coined.

That said, I knew with the new autism prevalence numbers people would misuse them. It’s pretty obvious.  They’ve used that misinformation to drag parents into a world of guilt and shame for being part of vaccine injuries that, in at least the vast majority of cases, didn’t happen.  Even more, the autism-is-a-vaccine epidemic community had the resources for over a decade to make a real difference in the lives of autsitic people. As we watch autism fade a bit from the public’s view, it’s difficult to not cry a bit for the lost opportunity. It’s that, not their failed logic or twisted facts that is why I wrote the above.

By Matt Carey

Americans are still failing to identify and serve minority autistic children

27 Apr

The CDC recently published another autism prevalence study. It’s 23 pages long and has 26 authors, took 2 years to put together and no doubt cost millions of dollars. Out of that, the one fact from it that will be quoted is simply–the autism rate is now at 1.68%, or 1 in 59.

There’s so much more. But sometimes focusing on one simple message makes more impact than a lengthy analysis. So I’ll pick my own simple message (of my own):

we are failing to identify minority autistic children. And with that, we are failing to provide them the appropriate services and supports they deserve as citizens and residents of the U.S.

We can and we should do better.

Here is table 3 from the report:

The estimated autism prevalence for Hispanics is 1.4%. For Whites, it is 1.7%. Thousands of Hispanics and other minorities are being missed. Overall, thousands of autistic children, and many, many more adults, are being missed. But that’s another discussion.

By Matt Carey