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A vaccinated vs. unvaccinated study and, guess what, vaccinated kids do better on tests

22 Jan

One statement people make a lot on the internet is “where’s a study of vaccinated vs. unvaccinated populations?” Well, here’s one: The effect of vaccination on children’s physical and cognitive development in the Philippines.

When comparisons between vaccinated and unvaccinated populations are proposed, we usually think of the U.S. and trying to work with the small unvaccinated population in a larger vaccinated population. Here we see the reverse: a smaller vaccinated population in a majority unvaccinated population.

What did they find? Here’s the abstract:

We use data from the Cebu Longitudinal Health and Nutrition Survey (CLHNS) in the Philippines to link vaccination in the first 2 years of life with later physical and cognitive development in children. We use propensity score matching to estimate the causal effect of vaccination on child development. We find no effect of vaccination on later height or
weight, but full childhood vaccination for measles, polio, Tuberculosis (TB), Diphtheria, Pertussis and Tetanus (DPT) significantly increases cognitive test scores relative to matched children who received no
vaccinations. The size of the effect is large, raising test scores, on average, by about half an SD.

That’s right. Test scores are increased in the vaccinated population. Higher. They did better.

The study highlights many of the difficulties in doing a vaccinated/unvaccinated population comparison: how to control for confounds. The population that choses the minority approach, be it vaccinating (in the Philippines) or not vaccinating (as in the U.S.) are likely different in other respects as well. Small sample sizes also a limitation. The authors acknoweldge this:

While our results are statistically significant, the sample size is relatively small due to the restriction of the sample to the common support. In addition, the matching of treatment and control groups may be imperfect if there are unobserved confounding factors that affect both vaccination and cognitive development. We therefore do not see our results as definitive. However, the results do however highlight the potential significance of vaccination as a human capital investment and suggest that further research in this area is warranted.

So, let’s consider this question: if there is a real correlation, is it the vaccination itself (unlikely in my opinion) or preventing the diseases (much more likely)? Since as I’ve indicated, I tend towards the latter explanation, let’s consider this: another effect of herd immunity might be cognitive. Since my family and the vast majority of families in the U.S. vaccinate, many diseases are not seen here. Even the unvaccinated are protected.

So, when Jenny McCarthy or others say, “I’d take measles any day over autism”, aside from making the huge mistake of assuming that autism and vaccination are linked, she may be saying “I’d take a half-standard-deviation drop in cognition over vaccination”.

I await the inevitable, “we asked for a comparison of vaccinated vs. unvaccinated populations, but not that comparison”.

—
By Matt Carey

Mayer Eisenstein files for bankruptcy…again

22 Jan

Mayer Eisenstein is a go-to person in the vaccines-cause-autism community. He heads a large practice in the Chicago area and claims that his unvaccinated children do not have autism. He also was or is a part of the “Lupron Franchise”—a group of practitioners who took on the Geier idea that shutting down sex hormone production in autistics could be a treatment. It was a profoundly bad idea.

Mayer Eisenstein was the subject of an article in the Chicago Tribune: Autism doctor: Troubling record trails doctor treating autism. From that article:

Yet his suburban Chicago practice, currently known as Homefirst, garnered an alarming record: It was on the losing side of one of the largest U.S. jury verdicts — $30 million — ever awarded to the family of a newborn in a wrongful-death suit.

In court records dating back three decades, the families of dead and brain-damaged children repeatedly alleged that doctors who work for Eisenstein made harmful mistakes — sometimes the same error more than once. His practice also has been dogged by accusations in court records that its offshore malpractice policy was phony.

After the $30M verdict, Mayer Eisenstein filed bankruptcy. Which was not permitted. Again from the article above:

With bankruptcy off the table, a Cook County judge acknowledged the practice’s claim of insolvency, consolidated the $30 million verdict, five remaining malpractice cases and two civil fraud cases and ordered mediation.

Last July, the judge approved a $1.275 million settlement that Homefirst must divide among six families over seven years. Eisenstein’s practice made the first $100,000 payment last September, four months before he opened the autism clinic.

It appears that the $1.275M settlement noted above is the topic of a battle ongoing in the current bankruptcy filing by Dr. Eisenstein. Per the complaint:

The aggregate Settlement Amount of $1,275,000 represents a small fraction of the total of claims by the Personal Injury Plaintiffs, some of which had reached verdict and judgment.

In other words, it appears Mayer Eisenstein wasn’t allowed to avoid payment by filing bankruptcy, but he did reduce the payments dramatically. The settlement also included a payment schedule. The families claim that four annual payments for a total of $430,000 were made, then the payments stopped after 2011. They claimed (as of August 2013):

Installments to Be Paid on or Before: Amount

September 22, 2012 (not paid when due). . . . . . . . . . . . $ 140,000.00

September 22, 2013 (not yet due). . . . . . . . . . . . . . . . . . $ 150,000.00

September 22, 2014 (not yet due). . . . . . . . . . . . . . . . . . $ 160,000.00

September 22, 2015 (not yet due). . . . . . . . . . . . . . . . . . $ 395,000.00

Total due and unpaid and to become due $ 845,000.00

Per the docket, the case was scheduled to go to hearing last month.

In short, it appears that a multiple families were injured by Mayer Eisenstein and/or member of his practice. They sought and were granted damages, only to have Dr. Eisenstein negotiate those down in a 2004 bankruptcy filing. Dr. Eisenstein made some payments, but then stopped. And he now appears to be trying to avoid further payments as part of his new bankruptcy filing, which the families are fighting. Again.

Why, one might ask, didn’t the families get some secutity pledged to cover the settlement should Dr. Eisenstien stop payments? Seems a reasonable thing to do. The answer is they did. It appears that the property he pledged as security was not under Mayer Eisenstien’s control. In other words, when the families sought to get the property in lieu of the payments, they found that Dr. Eisenstein (who holds a law degree in addition to his medical credentials) couldn’t directly hand it over.

The records of the Office of the Recorder of Deeds of Cook County, Illinois disclose the following transactions for the property at 1101 Dodge, Evanston, Illinois, PIN 10-24-

208-032-0000:

(a) Karen Eisenstein (Mayer Eisenstein, M.D.’s spouse) took title by a deed recorded on April 29, 2002 as document number 0020384408.

(b) Karen Eisenstein transferred title to North Star Trust Co. Tr. # 36189 by a deed in trust recorded on June 11, 2003 as document number 0316239026.

25. Paragraph 6 of the Circuit Court order of July 12, 2008 further provides:

“6. Plaintiffs are to have secured creditor status in the event of an applicable bankruptcy filing.”

So, it would appear that Mayer Eisenstein pledged a property as security for the settlement—a property which he had transferred to his wife in 2002 and which she had transferred to a trust company, in 2003. In other words, to this layman, it appears that at the time he put the property up, it was effectively shielded from actually being used as security.

Another question that one would reasonably ask is why weren’t these claims paid by malpractice insurance? That gets very convoluted, but the original settlement agreement included the statment

“I. Defendants in this matter affirm that they do not have any liability insurance coverage for any of the claims of the remaining plaintiffs.”


Defendants would be Mayer Eisenstein and his practice. And here is where it gets convoluted. The current complaint states

45. At one of the meetings pursuant to Section 341 of the Bankruptcy Code, Mayer Eisenstein, M.D. stated that from time to time he has malpractice insurance to allow him to be on staff at an area hospital.

46. At that same meeting, Mayer Eisenstein, M.D. stated that he did not submit any of the claims to that malpractice insurance carrier, because, as he claimed, if he had the insurance would have been cancelled, and he could no longer use the hospital

47. If Mayer Eisenstein, M.D. had medical malpractice insurance coverage in place at a time when the claims or one or more of the Personal Injury Plaintiffs cases arose, then the
statement was false.

Maybe he didn’t have insurance. Maybe he did and didn’t submit the claims.

Let’s take a look back at the Chicago Tribune article. In addition to discussing the Lupron clinic Dr. Eisenstein set up, it also discusses his history with insurance:

He also dabbled in group health plan sales to Illinois families but tangled with state insurance regulators in the mid- to late 1990s. Regulators warned consumers in a newsletter that Eisenstein “continued to illegally market” the Homefirst Health Plan, based in the British Virgin Islands, even after they told him the plan was ineligible. Despite this, he continued selling the plan, records show, and they ordered him to “cease and desist.”

In an interview, Eisenstein said he was offering a “fraternal health plan,” not traditional health insurance, so he said he didn’t have to listen to regulators. He no longer sells health plans.

And, later:

After Nathan Howey’s death, Weiss Hospital sued Homefirst, Rosi and Eisenstein for fraud, alleging they misrepresented their Caribbean-based malpractice policy. Eisenstein testified that he was in St. Kitts helping one of his daughters, a veterinary student there, buy a condo when the lawyer who helped arrange the sale told Eisenstein he also sold malpractice insurance.
“I was tickled pink to get insurance,” he said under oath.

A Cook County judge called it an “improperly underwritten insurance plan.” Eisenstein, who says the policy is legitimate, agreed to pay Weiss $50,000 after mediation.

Yes, “tickled pink” to get insurance. From a Caribbean island real estate/insurance salesman.

For those interested, here are some of the documents from the case discussed above.

Case 13-01050, lawsuit

Exhibit A

Exhibit B

—

By Matt Carey

Can we just drop “tsunami” from the autism discussion?

20 Jan

Todd W. over at Harpocrates Speaks discussed a recent video from Autism Speaks: Sounding the Alarm.  Todd’s article, Autism Speaks Sounds Fear notes how the Autism Speaks film uses the old “autism tsunami” rhetoric.

Why do we have to discuss how this is a bad idea?

Let’s leave behind the whole “substitute for calling autism an epidemic” thing. What’s a tsunami? It’s a mindless thing. A terrible event. It wreaks havoc on people.

I would invite Autism Speaks to explore the concept of “othering“.

“There is a tsunami coming. An estimated half a million children with autism will become adults in the next eight or so years.”

Fear. Fear autistics. They are coming to ruin our lives.

Othering.

Please stop it.

—
By Matt Carey

Celebrities and seizures: Evan’s grandmother speaks out

12 Jan

Jenny McCarthy is the face of vaccine rejectionism in America. The story she tells of how her son, Evan, became autistic after his MMR shot is arguably the origin myth for the anti-vaccine movement, and the legions of “Warrior
Mothers” who follow her. Now, a competing narrative from someone else close to Evan calls the myth into question. “I have such tremendous guilt for not speaking up when I knew something wasn’t right,” says Joyce Bulifant, Evan’s paternal grandmother.

“But I was afraid of Jenny, and didn’t want to be the interfering mother-in-law. I was more concerned about me than taking care of Evan.” She agreed to speak with AutismNewsBeat.

McCarthy’s many critics have pointed to her numerous contradictions. She told Oprah Winfrey, for example, and there is “no doubt in my mind” that the MMR vaccine caused her son Evan’s autism. But she has also written that Evan showed signs of delay by six months – one year before the shot. “I don’t think she’s very fond of me, but I love her because she is Evan’s mother. It makes me sad that we don’t have a true relationship,” says Bulifant. “That makes me very sad.”

– more at
autismnewsbeat.com

Jenny McCarthy, autism families are not your shield

7 Jan

Jenny McCarthy just got herself in the news again. She felt harmed by an article on a celebrity news website and threatened them with legal action. Here’s her statement:

Stories circulating online, claiming that I said my son Evan may not have autism after all, are blatantly inaccurate and completely ridiculous. Evan was diagnosed with autism by the Autism Evaluation Clinic at the UCLA Neuropsychiatric Hospital and was confirmed by the State of California (through their Regional Center). The implication that I have changed my position, that my child was not initially diagnosed with autism (and instead may suffer from Landau-Kleffner Syndrome), is both irresponsible and inaccurate. These stories cite a “new” Time Magazine interview with me, which was actually published in 2010, that never contained any such statements by me. Continued misrepresentations, such as these, only serve to open wounds of the many families who are courageously dealing with this disorder. Please know that I am taking every legal measure necessary to set this straight.

Emphasis mine.

As I already noted elsewhere: don’t use my family as your shield.

Your conventions promote absolute nonsense posing as “therapies”. Forcing disabled children to drink bleach solutions or take bleach solution enemas. Shutting down the sex hormone production in disabled children on the mistaken idea that this will help to remove “toxins”. Chelating disabled kids for faux mercury poisoning.

For parents like me who reject your nonsense, you describe us as: “[they] fall into this victim role, and they like it”

News stories about you, correct or incorrect, open no wounds for me.

You added that line to paint yourself as a leader of the autism community. You aren’t.

Stand up and distance yourself from your previous stances on vaccines. That would be leadership. Tell your organization and your parent convention that some of these “therapies” are harming children and you won’t promote them. That would be leadership.

Using autism for self promotion, like you are doing here, that’s not leadership.

—
Matt Carey

Jenny McCarthy setting the record straight…when it suits her

6 Jan

Jenny McCarthy suddenly popped up again in the autism news. Why? Some celebrity website posted an article “Changing Her View? Jenny McCarthy Abandons Controversial Position On Vaccines And Says Her Son May Not Have …”. Note that the link for that story goes to a “404” (page not found). I.e. the story seems to have been pulled.

JennyReturns

The full title seems to have been “Changing Her View? Jenny McCarthy Abandons Controversial Position On Vaccines And Says Her Son May Not Have Autism After All“.

Note, there are two points in that story. The first–that she’s abandoned her controversial position on vaccines. She seems to have dodged that question. The second–that she says her son may not have have autism after all. She made what seems to be a conflicting response to that.

Apparently the original story cited the idea that McCarthy’s son actually had Landau-Kleffner syndrome, not autism. As I recall, that idea was first put forth by Dr. Daniel Ruben in Neurology Today in a letter “Fanning the Vaccine‐Autism Link“. He wrote:

In “After Vaccine-Autism Case Settlement, MDs Urged to Continue Recommending Vaccines” (June 5), Dawn Fallik correctly cites Jenny McCarthy as a celebrity fanning the flames of the vaccine-autism link. McCarthy also makes parents think that autism can be cured with unproven treatments — as she claims is the case with her son — documented in her much publicized book, Louder than Words: A Mother’s Journey in Healing Autism (Dutton 2007).

Unfortunately, what the public does not realize as well as perhaps McCarthy is that her son was most likely misdiagnosed with autism in the first place. His disorder began with seizures and, subsequently, with the seizures treated, he improved. This would be more consistent with Landau-Kleffner syndrome, which often is misdiagnosed as autism.

Daniel B. Rubin, MD, PhD

I can’t recall Jenny McCarthy accepting the idea of Landau-Kleffner, or even commenting on it. So the original story in Radar Online was incorrect and it’s good they corrected their mistake. They posted an new article, “Jenny McCarthy: ‘My Son Does Have Autism’“. He does have autism? Present tense?

Stories circulating online, claiming that I said my son Evan may not have autism after all, are blatantly inaccurate and completely ridiculous. Evan was diagnosed with autism by the Autism Evaluation Clinic at the UCLA Neuropsychiatric Hospital and was confirmed by the State of California (through their Regional Center). The implication that I have changed my position, that my child was not initially diagnosed with autism (and instead may suffer from Landau-Kleffner Syndrome), is both irresponsible and inaccurate. These stories cite a “new” Time Magazine interview with me, which was actually published in 2010, that never contained any such statements by me. Continued misrepresentations, such as these, only serve to open wounds of the many families who are courageously dealing with this disorder. Please know that I am taking every legal measure necessary to set this straight.

Here’s a hint: don’t use “autism families” as a shield. What world do you live in where a story about you, correct or incorrect, “opens the wounds” of people like me?

Let’s pause a moment to acknowledge Jenny McCarthy accusing other people of being “irresponsible and inaccurate”. A statement dripping with irony coming from Jenny McCarthy.

Let’s also notice, we are back to present tense, Evan has autism. If statements that “Evan may not have autism after all” are incorrect, then he has autism now. Present tense.

Why make a big deal out of the tense? Because she’s made statements that her son is no longer autistic. For example, on Larry King Live in 2009:

KING: What is still evident about his autism? In other words, if I spent a day with Evan, what about him would be different about him than any kids.

MCCARTHY: Absolutely nothing. Seizures, that would probably …

CARREY: This is the risk. When he gets a fever we have to worry because there are seizures connected autism, to this disorder.

MCCARTHY: He had a vaccine injury which led to seizures. So we still can’t necessarily say that those are healed, but the autism is [gone].

The transcript had “gob” in place of what I believe was “gone”.

In 2009 autism was past tense. Now it’s present tense. And recall another interview where she says he doesn’t have autism any more.

And let’s address the whole issue of Landau-Kleffner syndrome. The statement by Dr. Ruben was that her child was misdiagnosed, not that he “was not initially diagnosed with autism” as Ms. McCarthy wrote. I don’t know what Radar Online wrote as the story is gone, but it looks like Jenny McCarthy is fighting a bit of a straw man there.

I’ll also note that Jenny McCarthy seems to be taking a page from Andrew Wakefield and the founder of her organization (Generation Rescue) and threatening legal action. It makes news. Why do I figure a phone call, a tweet or some other communication was all that was needed?

But, let’s get back to that original article: Jenny McCarthy Abandons Controversial Position On Vaccines And Says Her Son May Not Have Autism.

Tell me, where in the above statement did she address the vaccine question? Looks to me likes she completely dodged that. Perhaps there’s a statement somewhere else?

So, as far as I can see, she rushed to answer only one part of the original story. The less controversial part.

But that’s Jenny McCarthy.

While she’s storming about, threatening legal action, I wish she would rush to correct the record on other statements she’s made. For example, she hasn’t been exactly clear on how much gap there was between her kid being vaccinated and the onset of his seizure disorder. Her book, as I recall, describes her son experiencing his first seizures at about age 2.5. Which, if he was vaccinated per the schedule, would be about 1 year after his MMR.

But here’s how she told the story:

MCCARTHY: My son died in front of me due to a vaccine injury. And there are many — every week I get a picture of a dead child.

KING: You lost a son?

MCCARTHY: Evan died in front of me for two minutes, cardiac arrest. Every week, I get a picture sent to me of a child that died following a vaccination.

Another time on CNN: “People are also dying from vaccinations. My son died in front of me for two minutes.”

I recall back when McCarthy was popular in autism circles many online discussions recounting how Evan McCarthy died immediately following vaccination. Why hasn’t Jenny McCarthy taken the time to correct that impression?

Back to today, why didn’t she take the opportunity to address her “controversial” ideas on vaccines? I put “controversial” in quotes because they aren’t controversial. They are just incorrect. And irresponsible. I won’t add her other adjective, “ridiculous”, as her statements have caused too much harm to be called “ridiculous”.

Here’s another exchange from a Larry King Live show:

KING: Isn’t the problem here, Jenny, that people sometimes listen with one ear are going to panic. And not vaccine at all?

MCCARTHY: Probably. But guess what? It’s not my fault. The reason why they’re not vaccinating is because the vaccines are not safe. Make a better product and then parents will vaccinate.

Note how she again follows an example of Andrew Wakefield: “it’s not my fault”.

And what about her interview in Time Magazine? Here’s a 2009 interview (the 2010 interview is behind a paywall)

I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it’s their f___ing fault that the diseases are coming back. They’re making a product that’s s___. If you give us a safe vaccine, we’ll use it. It shouldn’t be polio versus autism.

She’s not anti-vaccine, she just thinks they are not safe and a “…product that’s s___.”

And it’s not her fault. Never is.

Let’s go back to Larry King Live:

KING: Probably due to you, jenny, and programs like this, the percentage of children getting vaccinations is dropping.

Do you think that’s good?

MCCARTHY: I think it’s only good because it’s the only thing that’s going to shake up the CDC to do something about it. And, you know, it’s a damn shame that we invited them here on this program on World Autism Day to come sit with us so I can ask them questions on behalf of the autism community. And they denied their appearance again, which, of course, they’re going to give their statement.

OK, it’s not her fault that parents aren’t vaccinating their kids, but it is because of her that they aren’t. Pretty fine distinction, one which I don’t agree with.

And, since those statements, we’ve seen rises in vaccine preventable diseases. All not her fault, don’t ya know. It’s “good” and “due to [her]” but not her fault.

Here’s another statement on Larry King. Granted, not by her but by her ex partner Jim Carrey:

KING: Anderson Cooper, “AC 360,” 10:00 Eastern, 7:00 Pacific. Jenny McCarthy’s mate — call him that — Jim Carey, called in. He says, and I’ll like you gentlemen to comment, vaccines are more of a profit engine than a means of prevention. And that’s why there are so many vaccines. Is that true? Jay Gordon.

Yes, vaccines are not a means of protection. I.e. they don’t work.

Vaccines are “s___” and “not a means of protection”.

Jump in any time Jenny and correct some of your statements. Twitter is at your fingertips.

Jenny McCarthy made a lot of irresponsible statements about autism over the years. And about vaccines. But she just dodged the opportunity to clarify her current position. She rode the controversy she made into the news and talkshows. And now that it’s a liability she avoids the controversy.

—
By Matt Carey

Embryo screening to reduce autism risk: it’s not in the future. It’s now

28 Dec

A news article on screening of embryos came out last week and it was picked up under various titles by various news outlets.

From Australia and New Zealand

Why IVF parents are choosing girls over boys, which google news also listed under Parents call for embryo screening to cut risks.

IVF parents choosing girls over boys

And a different take

Parents Worldwide Prefer Girls To Boys: Will India And China Learn?

From India

Why girls are preferred over boys by IVF parents

Here’s a quote from one of the stories:

Figures from one of Sydney’s top IVF clinics show about one in 20 parents seeking embryo screening are looking to have a female baby to reduce their risk of autism.

Australia does not allow for gender selection of embryos. One can’t tell the IVF team to pick male or female embryos. But one can ask for genetic screening.

University of Sydney senior lecturer in bioethics Chris Jordens said autism had a strong genetic basis, so it was within the guidelines.

And the trend towards genetic screening is strong and building in the US.

At a recent conference in Chicago, he saw a number of United States IVF providers offering parents without the conditions tests for between 180 and 600 common gene mutations, such as the BRCA ”breast cancer” genes.

Gender selection to reduce autism risk is about the most basic, the most crude, genetic screening one could imagine. But it’s real and it’s happening.

The concept of autism prevention through genetic screening, either in IVF or in selective abortions, has been a major ethical question with the push for genetics research in autism in the past decade.

The first step in guiding our societies towards an ethical approach to genetic testing is to present autism accurately. This is one reason why I and others speak out when groups such as Autism Speaks or some parent “advocates” present autism with phrases such as as “These families are not living” or “Life is lived…in despair”. Is life harder, more challenging for my kid? Absolutely. But what message are we sending to prospective parents when we tell them that their lives will be lived in despair or they will no longer be living if they have an autistic child? We are telling them to do whatever they can to avoid having an autistic child. We are telling them to pick and chose their embryos. We are telling them to selectively abort. We are telling the autistics of today that the perfect world (in the view of the majority) is one without them.

My kid and other autistics, children and adults, deserve life. They deserve the right to pursue happiness. Disabled does not equate to despair.

This is why, Autism Speaks, when you portray my kid as less, my life as not lived, I and others will speak out. Autism Speaks, it’s time you started listening.
—
By Matt Carey

Details about the potentially “recovered” autistic kids in the National Survey of Children’s Health

27 Dec

I recently wrote about data from the National Surevey of Children’s Health. In specific, I explored the question of just how many of those kids were identified as autistic at some time in the past and are currently not identified as autistic. Keep in mind the limitations of the NSCH, inlcuding (1) it’s a survey not a direct examination of kids, (2) similar to (1), this is all parent-reported data, (3) these are raw data, not corrected for any socio-economic factors.

I posed the question Are 20-30% of autistic children recovering? as this is how I’ve heard the results of the survey framed. Kid was once identified as possibly autistic/kid is not currently identified as autistic/therefore kid recovered from autism. While 17% of the kids in the survey “lost” their autism label, the parents report that most of these kids were never autistic to begin with.

In other words, the fraction of kids who might have recovered from autism is small. Much smaller than many people have been thinking after the 2007 NSCH data were released. Back then, David Kirby discussed the new prevalence numbers in his usual manner. For those who are not familiar with his “usual manner”, David Kirby was famous for “just asking questions” which lead the reader to believe that vaccines cause autism. He retains plausible deniability (I never said that vaccines cause autism, I just posed the question. Over and over. With cherry picked data to support the conclusion)

Back then Mr. Kirby wrote:

Among boys, for every 260-per-10,000 male children originally identified as having an ASD, 90 of them (34.6%) reportedly do not have the diagnosis now.

and

The percentage of girls who apparently lost their original label was 44.5%.

Followed later by:

Another item that will surely spark fiery debate is the reason why so many children previously indentified with ASD are currently not holding that diagnosis.

There are three main possible explanations:

1) Many children never had an ASD to begin with, and were simply “mislabled.”

2) Some children naturally “recovered” from ASD on their own without treatment, (though Lee Grossman and many others told me they have never seen this happen).

3) Interventions including behavioral therapy, dietary changes and biomedical treatments actually work, and it is possible to “recover” a child from the grips of ASD

Well, there’s never been a “fiery debate”. But he did implant the question in the minds of people and it has stuck. I’ve heard people claim a high “recovery” rate. We can now answer some of Mr. Kirby’s questions. We now know that, yes, many of these children never had an ASD to begin with. Some children went from having an autism label to not and the parents did not attribute the change to treatment. A small fraction (about 3%) of parents attribute the “loss” of the autism label to treatment, but we don’t know what treatments they credit. (Note how Mr. Kirby lumps dietary changes and biomed together with ABA, lending alternative medicine some credibility by association).

So, what about those kids whose parents reported some treatment(s) resulted in a change from actually autistic in the past to not autistic now. What can we say about those kids? Do they have any other challenges or diagnoses? What we can say is that a large fraction still have some diagnosis or parental concern.

Let’s go through some of the questions in the survey:

Recall that 2041 parents answered yes to Has a doctor or other health care provider ever told you that [S.C.] had Autism, Asperger’s Disorder, pervasive developmental disorder, or other autism spectrum disorder? (question K2Q35A)

Some of these kids were reported by parents to no longer have an autism label. And some of those parents attributed the change to treatment. How many one might ask? 69 answered yes to question K2Q3F_1: I am going to read a list of reasons why [S.C.] may no longer have autism or autism spectrum disorder. For each reason, please tell me if it applies to [S.C.]. Treatment helped the condition go away.

69/2041=3.4%.

So we are dealing with small numbers here, but there are more data to explore in the survey. In specific, parents were asked questions about diagnoses other than autism.

Here are a few examples of the conditions those 69 kids still have:

23 parents answered yes to “Does [S.C.] currently have speech or other language problems”. For reference, 23/69=33%

18 parents answered yes to “Does [S.C.] currently have a learning disability?”. 18/69 is 26%.

6 parents answered yes to “Does [S.C.] currently have intellectual disability or mental retardation?”

18 parents answered yes to “Does [S.C.] currently have ADD or ADHD?”

12 parents answered yes to “Does [S.C.] currently have anxiety problems?”

10 parents answered yes to “Does [S.C.] currently have behavioral or conduct problems?”

5 parents answered yes to “Does [S.C.] currently have epilepsy or seizure disorder?”

25 parents answered yes to “During the past 12 months, has [S.C.] received any treatment or counseling from a mental health professional?”

Note that parents can answer yes to more than one question, so the total adds up to more than 69.

Kids go from having an autism label to not having an autism label. The fraction seems small, but it’s there. But not having an autism label is not the same thing at all as not having any label or challenges.

I don’t write this to throw cold water on those excited by autism recovery. But I do think we need to quote numbers that are as accurate as we can. The National Survey of Children’s Health points to any autism recovery being a small fraction of the autistic population (3% or less) and, of those, other diagnoses, disabilities and challenges are often present.

—
By Matt Carey

Is SSRI use during pregnancy an autism risk factor?

23 Dec

A few recent studies have suggested that using SSRI’s during pregnancy might increase the risk of a child later being diagnosed autistic. SSRI’s are commonly used to treat depression.

Earlier this year a team from Bristol studied the question and concluded:

In utero exposure to both SSRIs and non-selective monoamine reuptake inhibitors (tricyclic antidepressants) was associated with an increased risk of autism spectrum disorders, particularly without intellectual disability. Whether this association is causal or reflects the risk of autism with severe depression during pregnancy requires further research. However, assuming causality, antidepressant use during pregnancy is unlikely to have contributed significantly towards the dramatic increase in observed prevalence of autism spectrum disorders as it explained less than 1% of cases.

In other words, mothers taking SSRI’s may have more autistic children (50% increased risk) but that could be due to the underlying condition (depression) rather than the SSRI use.

A previous study pointed to an exposure risk from SSRI’s:

Although the number of children exposed prenatally to selective serotonin reuptake inhibitors in this population was low, results suggest that exposure, especially during the first trimester, may modestly increase the risk of ASD. The potential risk associated with exposure must be balanced with the risk to the mother or fetus of untreated mental health disorders. Further studies are needed to replicate and extend these findings.

This past week another study was published: Use of selective serotonin reuptake inhibitors during pregnancy and risk of autism. This tells a slightly different story: no increased risk for SSRI use during pregnancy, but an increased risk for mothers who used SSRI’s before pregnancy but not during. That would be consistent with the group above who postulated “Whether this association is causal or reflects the risk of autism with severe depression during pregnancy requires further research. ”

A good discussion of this work is found at the Simons Foundation SFARI website: Study challenges link between antidepressants, autism.

I’ve seen people state emphatically based on the earlier work that SSRI’s should be banned for pregnant women. The present study shows how problematic drawing such strong conclusions from these small studies can be. What if the risk is for women who stop SSRI use?

The authors of the present study note that more work is warranted. This is clearly the case as the studies to date are conflicting and use small populations.

Here is the abstract from the present study:

BACKGROUND
Studies have raised concern about an association between the use of selective serotonin reuptake inhibitors (SSRIs) during pregnancy and an increased risk of autism spectrum disorders in the offspring.
METHODS
We conducted a cohort study of all singleton live births in Denmark from 1996 through 2005 (626,875 births), with follow-up through 2009. Using Danish population registries, we linked information on maternal use of SSRIs before and during pregnancy, autism spectrum disorders diagnosed in the offspring, and a range of potential confounders. We used a survival analysis of the time to diagnosis in the offspring with Poisson regression to estimate rate ratios of autism spectrum disorders according to maternal use of SSRIs.
RESULTS
During 5,057,282 person-years of follow-up, we identified 3892 cases of autism spectrum disorder (incidence rate, 77.0 per 100,000 person-years). A total of 52 cases during 42,400 person-years of follow-up involved offspring of women who were exposed to SSRIs during their pregnancy (incidence rate, 122.6 per 100,000 person-years). As compared with no use of SSRIs both before and during pregnancy, use during pregnancy was not associated with a significantly increased risk of autism spectrum disorders (fully adjusted rate ratio, 1.20; 95% confidence interval [CI], 0.90 to 1.61). Among women who received SSRIs before pregnancy but not during pregnancy, the corresponding fully adjusted rate ratio was 1.46 (95% CI, 1.17 to 1.81).
CONCLUSIONS
We did not detect a significant association between maternal use of SSRIs during pregnancy and autism spectrum disorder in the offspring. On the basis of the upper boundary of the confidence interval, our study could not rule out a relative risk up to 1.61, and therefore the association warrants further study. (Funded by the Danish Health and Medicines Authority.)

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By Matt Carey

Are 20-30% of autistic children recovering?

22 Dec

Some children are identified as autistic and later found to be non autistic. How much does this represent “recovery” from autism and how much does this represent something else? The question became very big after the 2007 National Survey of Children’s Health NSCH) results were published. The survey asked parents if they had ever been told by a health care provider that their child was autistic. (Note that this is different from confirming that a child actually had a diagnosis). They then asked if the child is still autistic and about 40% said, no, I was told my kid was autistic before but he/she is not autistic now.

This raised a lot of questions. Are these kids “recovering” from autism? Were they autistic to begin with? These and more questions just couldn’t be answered in by the data collected.

Consider the 2007 dataset.Here is a list of raw data from the 2007 NSCH. 1427 parents, or 1.56% of parents answered yes to “Has a doctor or other health care provider ever told you that [S.C.] had Autism, Asperger’s Disorder, Pervasive Developmental Disorder, or other Autism Spectrum Disorder? ” [S.C] is the code for the child being discussed (selected child or something to that effect). (as with all figures in this article, click to enlarge).

NSCH 2007 ever told

Again, 1427 parents who said that some medical professional had stated the child was autistic in the past. Of these 459 answered no to “Does [S.C.] currently have Autism or ASD?”

NSCH 2007 still autistic

What’s going on there? Again, are these kids recovering? It’s a question certainly worth looking in to. The researchers felt it needed more attention and in the 2011/12 survey, discussed below, the researchers did ask more questions about autism and this subgroup.

The 2011-12 NCSH was published this past year (March of 2013). Once again they asked autism-related questions. The prevalence estimate from this survey was about 2% (1 in 50). In all, 2.13% answered yes to “Has a doctor or other health care provider ever told you that [S.C.] had autism, Asperger’s disorder, pervasive developmental disorder, or other autism spectrum disorder? ” [S.C] is the code for the child being discussed (selected child or something to that effect).

NSCH ever told

They then asked, “Does [S.C.] currently have autism or autism spectrum disorder?” and 0.36% said no. I.e. out of the 2.13%, 1.7% said that, yes, they report that their child is autistic. After controlling for some factors, an estimated prevalence of 1 in 50 (2%) was reported.

NSCH still autistic

So, what about the 343 kids who were previously identified as autistic but who aren’t now. 343 kids are about 17% of all those ever identified as autistic. But in 2007, about 33% of parents answered “no” to “Does [S.C.] currently have autism or autism spectrum disorder?” I.e. the fraction of these potentially recovered kids went down by 1/2. In 4 years. If those kids are a measure of autism recovery, something dramatic is happening. As in, autism recovery rates are dropping fast.

Luckily we can test whether these kids do represent autism recovery. The authors of the NSCH added new questions to the 2011-12 survey. First they asked the obvious and important question “To the best of your knowledge, did [S.C.] ever have autism or autism spectrum disorder? ” 228 parents, 0.24% of the total population surveyed, said “no”. Only 97 said “yes”.

NSCH ever had.

That’s a lot of numbers, so let’s recap. In the 2011/12 survey:

95,677 parents were surveyed
2,041 answered that at some time they were told their child was autistic
343 of those said their child is not currently autistic
228 of those said that their child never was autistic.

Most of the kids who “lost” their autism label were never autistic to begin with.

Of the total kids in the “ever identified autistic” group, 97/2041 or about 5% said that they believed their child was autistic at one time in the past but was not in the present. Not 20%, not 30% as some have suggested. 5%. Still worth investigating, but not the high numbers I sometimes hear people quote.

The survey authors asked two follow up questions to the parents who reported that their child is not currently autistic but was in the past “Treatment helped the condition go away” and “The condition seemed to go away on its own”. For those looking for support that some therapy or combination of therapies is recovering kids: 69 parents out of 2043 reported that their kid lost the autism label and that treatment was the primary factor in the loss.

69/2043: we are talking about roughly 3%.

NSCH follow up

They also asked parents to comment on whether “The behaviors or symptoms changed” or “A doctor or health care provider changed the diagnosis”.

NSCH more questions

There are a few other questions on autism. For example, “With more information, the diagnosis was changed” (158 parents said yes). And “A doctor or health care provider changed the diagnosis” (46 parents said yes).

The last two autism questions are very important: “The diagnosis was given so that [S.C.] could receive needed services” and “You disagree with the doctor or other health provider about his or her opinion that [S.C.] had autism or autism spectrum disorder”. Out of the 343 children who “lost” their diagnoses, 102 (30%) parents say the diagnosis was given to obtain services. 122 (36%) of parents say they disagree with the original diagnosis.

The parents report that these kids were never autistic.

NSCH last autism questions

To summarize–Yes, a significant fraction of the children in this survey reported as once holding an autism label are not currently autistic. About 17%, to put a number on it. And, of that 17%, many have social factors involved in their “loss” of an autism diagnosis: incorrect diagnoses, the search for services, etc.. About 5% of autistic kids are reported by their parents as once really being autistic but not presently autistic. Are these kids a subgroup of actual recovery? It’s hard to tell.

One can drill down further into the data and get more insight about this group, but that will wait for another article.

The bottom line is simple, though. The National Survey of Children’s Health does not support the idea that 20-40% of autistic children are recovering. Maybe a few percent are, and with small numbers that will make studying this subgroup very difficult.

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By Matt Carey

note: numerous edits were made for readability, but no substantial changes to the basic information was made.

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