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Comment on: Diagnosis of autism, abortion and the ethics of childcare in Yoruba culture

9 Nov

I have an email alert from PubMed for autism. I’ve seen a few very problematic papers go by over the years, but this one really bothers me. The study is from Nigeria, home of much of the Yoruba people. I have not seen the full paper, but from the brief abstract it appears that the Yoruba people have developed moral principles that create an accepting environment for autistic children. They believe in “equality of humans at birth” and “solidarity”. The author of the study appears to take the position that “despite these justifications” there is a need for a “contextual rethinking” which would allow for aborting fetuses deemed to be at high risk for autism.

Note that there is not existing test to determine that a fetus is at high risk for developing autism. And even if there were, really? We need contextual rethinking to allow for abortion of autistics? And this is in a medical journal?

Acceptance, equality and solidarity should not preclude diagnosis and support for autistics, but I wonder if the author is going beyond that in his/her call for these Yoruba principles from prohibiting treatment.

Here is the abstract:

Indian J Med Ethics. 2014 Oct-Dec;11(4):245-8.

Diagnosis of autism, abortion and the ethics of childcare in Yoruba culture.

Fayemi AK.

Author information

Abstract

This paper examines the ethics of childcare in Yoruba culture in the contexts of autism and abortion. The traditional Yoruba moral principles of ibikojuibi (equality of humans at birth) and ajowapo (solidarity) have been theoretically developed to establish the personhood of autistic children and provide a justification for not aborting foetuses with autism. Despite these justifications, this paper argues that there is a need for contextual rethinking, which would allow for: (i) prenatal genetic testing, as well as abortion of foetuses with a high risk of the autism mutation, and (ii) early clinical diagnosis and treatment of autistic children in contemporary Yoruba society.

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By Matt Carey

London McCabe

8 Nov

London McCabe was a six year old kid.  He was a kindergartner whose principal described him as loving to sing and happy.  He liked hats.

I wish when news outlets would report on murders, they would start with who was killed.  The good points of the person.  What we as a people lost.

I bring that up because, as you likely suspect, London McCabe was killed.  Earlier this week, London McCabe was killed when his mother threw him from a bridge, from which he dropped about 133 feet to the frigid waters of a river below.  That’s about a three second fall.  Three seconds is short, I grant you, but long enough to feel abject terror.

If news articles focused on the victim, perhaps that sort of fact would come forward.  Perhaps we would be put in the place of sympathizing with the victim.

When you think of secondary victims, they would be the family and friends who knew and loved London.   People who had no way to avoid thinking about how he died.  I know I can’t avoid it. I can’t avoid thinking of my own kid terrified and falling.

I wish news articles wouldn’t immediately jump on the disability (or disabilities) of the victim, like the first article I saw.  For London McCabe was autistic.  Nonverbal.

Facts about motive are very scarce right now.  There are indications that the mother suffered from some mental illness.  As a community we’ve seen that argument play out all too often as a “blame the victim” approach: it’s hard to raise an autistic child and the parent buckled under the pressure.  We’ve seen this approach used cynically.  That doesn’t preclude actual mental illness in this case.  We ask for equality in the treatment of those who kill in our community.  Equality means not throwing our friends in the mental illness community under the bus.  The disability of the victim is not an excuse.  It is not a mitigating factor.  Real mental illness is.  Let’s see what the facts are in this case.

London McCabe’s family is not ready to discuss the details, but has released this message at a prayer vigil:

We are deeply touched by the community outpouring of love and support for our family…The best way you can honor him and not let his death be in vein is to purpose in your hearts to respond in kindness, love and respect toward all those people in your lives especially those with special challenges…Don’t allow hatred, anger, bitterness, or revenge to fill your heart

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By Matt Carey

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Andrew Wakefield: paid $316k to administer $80k in grants by the Strategic Autism Inititiative

7 Nov

When Andrew Wakefield left Thoughtful House (which has since changed it’s name and removed all mention of him from their website), he announced a new effort: the Strategic Autism Initiative. He was going to manage research into the causes of autism. That was in 2010. Now he bills himself as a video director of the Autism Media Channel. Makes one wonder how well that Strategic Autism Initiative thing worked out.

Well, we can’t tell for sure as tax forms are only available through 2012. But the trends tell us that perhaps, just perhaps, the Strategic Autism Initiative lost steam in their fundraising.  Donations are way down.  And a lot of money has gone into salaries and very little into actual programs.

Strategic Autism Initiative 2010 tax form
Strategic Autism Initiative 2011 tax form
Strategic Autism Initiative 2012 tax form

Let’s do a little summarizing. Let’s look at trends for the money they take in (contributions) and the money that they’ve put out in salaries. The Strategic Autism Initiative pays Andrew Wakefield and Terry Arranga.

SAI contributions and salaries

OK, you gotta hand it to Andrew Wakefield–he pulled in $623k in 3 years, basically on his name and reputation. And, he took $316k of that money, about 50%. In total, salaries accounted for 58% of what the SAI took in. The first year of the SAI (2010) was a short year, hence the low salary. Mr. Wakefield’s salary appears to be based on $270,000/year full time. Officially he was working 30hours/week in 2010 and 2011. 15 hours/week in 2012.

Notice that the contributions were way down in 2012. Still a sizable $113k, but down from the previous years.

How does the salary outlay compare to the intake over the years? Well, it was relatively low the first year (the short year) and climbed to 80% in 2011 and 100% in 2012.

Salary Fraction

Not what one would call sustainable. Well, I guess if all one does is put money into salaries, that’s sustainable. Not exactly what a charity is supposed to be, though. Which begs the question, how much money did they have on hand at the end of each year?

Assets

Yep, pay out most of your money in salary and watch your assets go down. Also gives a partial explanation for why Mr. Wakefield is only listed as working 15 hours a week in 2012–there wasn’t the money to pay him more. The SAI would be about $70k in debt had they paid him for 30 hours/week.

In 2010, they paid out $20,260 in a grant to perform a UK Somali study.

SAI 2010 grants

In 2011 they paid out a $25k grant to Generation Rescue for a “vax/unvax study”

SAI 2011 grants

In 2012 they paid out $35k in grants. One to Mr. Wakefield’s former Thoughtful House colleague Arthur Krigsman and another to the Geiers for a study using the Florida medical database.

SAI 2012 grants

So, let’s consider this. In three years, Mr. Wakefield managed to give out 4 grants. Total of about $80k in grants. And for that effort he was paid $316k. What’s the supposed goal of the Strategic Autism Initiative?

SAI mission

“…to promote research in areas of autism and neurological disorders…”

Right. Promote research. About 13% of their budget went to promoting research. And that’s before we even consider the quality of that research.

Some bright people believe Andrew Wakefield. Some wealthy people believe Andrew Wakefield. Why, I don’t know. But even those who believe in what he says may someday question whether getting $0.13 on the dollar to the cause is worth keeping Andrew Wakefield employed.

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By Matt Carey

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Gigi Jordan found guilty of manslaughter in killing of her son Jude

6 Nov

Jude Jordan was an autistic boy. He was murdered by his mother. I use the term “murdered” in the colloquial sense of “a person deliberately took his life”. Legally it wasn’t murder. Legally it was manslaughter as the mother, the murderer, argued extreme emotional disturbance. Her story was convoluted, but she argued that she believed her son was being sexually abused by multiple people, including his biological father. She also argued that she believed that her ex husband intended to kill her and that would lead to the biological father becoming Jude’s caregiver. Having read documents she’s put online (she has some on a new website(http://www.gigijordantruth.com/) and more were on a now defunct website). I find her arguments seriously difficult to believe.

Jude’s mother is estimated to be worth about $50M. She had the money to hire a team of high powered attorneys to argue her case. And she will pay them more to appeal her case. But apparently she didn’t feel that she could use that $50M to hire attorneys to insure that someone she trusted could take care of Jude in case she died.

If you search for Gigi Jordan on Google, you can find her website right away. Because someone has bought advertising space for it. She apparently put that up as part of her media blitz that coincided with the jury going into deliberations.

But back to the important part of the story. Jude Jordan is dead. And the person who killed him may serve as little as 5 years in prison for the crime.

As happens whenever a news story about a parent killing his/her autistic child is put online, the comments include “walk in the parent’s shoes before you judge”.

Here’s the thing: I am a parent of an autistic child. A child with a very high level of challenges. I can’t say I’ve walked in Gigi Jordan’s shoes. I don’t have $50M like she did (how much is left after paying attorneys is unknown). I don’t know that I can set up a trust to care for my kid long after I’m gone. I can’t quit work to spend my years caring for my kid, as I would like. Gigi Jordan could do all of that.

As long as we are talking about walking in other people’s shoes: Gigi Jordan will never be able to walk in my shoes again. I love my time with my kid. And I want to protect my kid from caregivers in the future who think that one can murder a disabled kid and get a light sentence. And she’s part of the problem. When she gets a light sentence, it diminishes every disabled person’s chances of living a life free from the threat of caregiver abuse and/or murder.

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By Matt Carey

IACC Co-occurring conditions workshop: Lewin Group presentation on co-occurring conditions in autistic children in the U.S.

4 Nov

Anjali Jain of the Lewin group presented on data they have collected from medical records about the prevalence of co-occurring conditions found in autistic children in the U.S.. This presentation was made to the Interagency Autism Coordinating Committee in Sept. 2014. (the original video is here, and the Lewin Group talk started at about timestamp 17:50.  The original has closed captioning).

Some of the most common co-occurring conditions are anxiety and depression. In fact, mental health conditions are found in about 70% of autistics. Similarly, neurological conditions and neurodevelopmental disorders are found in about 70% of autistics. By comparison, GI+nutritional disorders (which include areas like allergies), which get a great deal of attention, are found in about 20% of the autistic population. While large, this is much less common than the 70% rates found for mental health and neurodevelopmental disorders.

Another interesting finding was that autistic children are seen more often for treatment of infectious diseases. If the risk for serious problems from infectious diseases is higher in autistic children, this makes the decision of many autism parents to stop vaccinating their children even more problematic.

The full video (with closed captioning) can be found here:

http://videocast.nih.gov/launch.asp?18636

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By Matt Carey

Presentations made to the Interagency Autism Coordinating Committee (IACC)

4 Nov

The U.S. Interagency Autism Coordinating Committee (IACC) holds regular meetings. Each IACC meeting typically has presentations by experts in various fields of autism research and services. Video of the meetings is made available by the NIH. For example the IACC workshop on under recognized and co-occurring conditions in ASD is there. It can be somewhat inaccessible in that the entire meeting is 7 hours long (and so is the video) while each talk was typically 10 minutes. In other meetings the talks have been longer, but it seems to me that some may find it valuable to have access to the individual talks. With that in mind, I have been pulling some of the meeting videos and cutting the talks out and posting to YouTube. I will post these talks as I get time.

The first set will be the epidemiology talks presented at the recent Workshop. One by the Anjali Jain of the Lewin Group, one by Lisa Croen of Kaiser Permanente, one by Isaac Kohane of Harvard University, and one by Daniel Coury of The Ohio State University.
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By Matt Carey

Emily Willingham: winner of the 2014 John Maddox Prize for Standing up for Science

28 Oct

Emily Willingham is one of the best writers on the science and social aspects of autism. She also writes on other topics and is an accomplished researcher. Her journalism can be found at her site, EmilyWillinghamPhD.com, The Thinking Person’s Guide to Autism (the Site and the Book), DoubleXScience, Forbes, and elsewhere.

With all that in mind, it’s great to see that she’s been recognized for her work. SenseAboutScience.org has announced that she will share the 2014 John Maddox Prize for Standing up for Science:

Dr Emily Willingham and Dr David Robert Grimes are the two winners of the 2014 John Maddox Prize for Standing up for Science.

The announcement notes:

The judges awarded the prize to freelance journalist Dr Emily Willingham and early career scientist Dr David Robert Grimes for courage in promoting science and evidence on a matter of public interest, despite facing difficulty and hostility in doing so. The winners equally embody the spirit of the prize and, at this relatively early stage in their lives, have yet to receive recognition for their work bringing science and evidence to the public. Both Emily Willingham and David Grimes reflect Sir John Maddox’s passion for investigative journalism and for social engagement by young scientists.

On Emily Willingham in specific:

Emily Willingham, a US writer, has brought discussion about evidence, from school shootings to home birth, to large audiences through her writing. She has continued to reach across conflict and disputes about evidence to the people trying to make sense of them. She is facing a lawsuit for an article about the purported link between vaccines and autism.

The Prize is a joint initiative of the science journal Nature, the Kohn Foundation, and the charity Sense About Science. The late Sir John Maddox, FRS, was editor of Nature for 22 years and a founding trustee of Sense About Science.

And a statement by Michael Fitzpatrick, doctor, autism parent, writer and contributer to Left Brain/Right Brain:

Dr Michael Fitzpatrick, author MMR and Autism: What Parents Need to Know and trustee of Sense About Science, responded to the news about Emily Willingham: “She has provided a particularly valuable service in confronting specious theories attributing autism to diverse environmental agents, from milk and vaccines to endocrine disrupters and maternal antibodies. She has also exposed quack treatments for autism and challenged ill-informed reports suggesting a diagnosis of Asperger’s syndrome as an explanation of the behaviour of serial killers (pointing out that people with autism are much more likely to be victims than perpetrators of violent crime). As co-editor of the excellent Thinking Person’s Guide to Autism, she has helped to equip parents and people with autism with a critical approach to the evaluation of claims made by researchers and therapists alike.”

The full article is at SenseAboutScience.org.
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by Matt Carey

Nick Walker on Neurodiversity: Some Basic Terms & Definitions

25 Oct

Nick Walker starts his introduction with “I’m an Autistic educator, author, speaker, transdisciplinary scholar, activist, parent, and martial arts master.” His writing is excellent and I’d highly recommend adding Neurocosmopolatinism to your list of blogs to track, if it isn’t there already.

A recent article by Mr. Walker covers the topic of neurodiversity clearly and accurately. It’s a great resource: Neurodiversity: Some Basic Terms & Definitions.

It is one of those articles I’d like to copy in it’s entirety. But instead I’ll send you to: Neurodiversity: Some Basic Terms & Definitions.

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By Matt Carey

Andrew Wakefield and Brian Hooker complain. Not honestly, but they complain

23 Oct

Andrew Wakefield and Brian Hooker have lately been trying to manage a “cdc whistleblower” story. The idea has been covered a lot recently, here and elsewhere. So, rather than go into more introduction, let’s take a look at the complaint they recently filed with the CDC office of research integrity. It’s long, so I’ll bring up a few glaring problems with the complaint letter. These problems have for the most part already been discussed here at Left Brain/Right Brain.

The basis of their arguments has been that allegedly the CDC found a statistically significant result suggesting that the MMR was associated with a higher odds ratio for autism in African American boys. They argue that the CDC then changed their protocol (analysis plan) to avoid reporting on this result. Mr. Wakefield and Mr. Hooker have since added a similar argument for “isolated autism”–autism without comorbid conditions like intellectual disability. They claim the CDC hid those results as well.

So, what does the complaint say in specific? It’s long, but here’s an interesting and key part and a good place to start. Under the section titled “The Georgia Birth Certificate Cohort (GBCC): what was its stated purpose?“, Hooker and Wakefield quote the

[Exhibit 2, page 7, emphasis added] The Analysis Plan, “Statistical Analyses” states that “race” data were available for the entire sample:

The only variable that will be assessed as a potential confounder using the entire sample will be the child’s race.

[Exhibit 2, page 8, emphasis added]. Thus, “race” data came explicitly from the “school record” and not from the Georgia birth certificate/Georgia birth
records and was available for the “entire sample”.

The funny thing is that quote, “The only variable that will be assessed as a potential confounder using the entire sample will be the child’s race” doesn’t match what’s in the screenshot of the analysis plan that Wakefield included in his recent YouTube video (click to enlarge).

Draft Plan 2

The plan actually states:

The only variable available to be assessed as a potential confounder using the entire sample is child’s race.

emphasis added.

See how “available to be assessed” in the actual plan has been changed into “that will be assessed” by Mr. Wakefield? Mr. Wakefield would like us to believe that the analysis plan called for a study to be reported broken down by race using all the kids in the study. He’s been arguing that since his first ugly “It’s like the Tuskegee experiment!” video. The thing is that the plan didn’t call for that. As I recently discussed, the sentence Mr. Wakefield misquotes was a statement of the limitations of the dataset they had (MADDSP) and explains why the CDC needed to get the birth certificate data to do a more thorough analysis.

As I also noted, the full paragraph references table included in the analysis plan made it clear that race was to be analyzed for the birth certificate sample, not the total sample as Mr. Wakefield is leading us to believe.  The title of the table shows us that they were planning to report detailed data on the birth certificate group, not the entire sample.

What I find interesting is that Wakefield and Hooker are not just misinterpreting the statement as I originally thought. In the complaint they clearly changed what the statement said. Besides being wrong all on it’s own, this change tells me they know that phrase they latched on to ( “The only variable that will be assessed as a potential confounder using the entire sample will be the child’s race”) doesn’t come close to fitting in with his story. I don’t see this as an honest mistake.

The complaint also includes the “isolated autism” argument Mr. Wakefield recently put into another YouTube video. In this, Mr. Wakefield claims that all sorts of methods were used to hide an association observed for MMR and autism without other conditions like intellectual disability, cerebral palsy, etc.. In his complaint and video, Mr. Wakefield claims one of the methods used to hide this association was by limiting “other conditions” to only “MR” (mental retardation/intellectual disability). In the video Mr Wakefield gives us a fragment of an audio attributed to Mr. Thompson of the CDC saying, “the effect is where you would think it would happen. It is with the kids without other conditions, without the comorbid conditions.”

Mr. Wakefield even went on to say

But that didn’t seem to happen. They deviated further from the analysis plan by limiting the isolated group to only those with no mental retardation. Even changing the age categories and composition of the isolated subgroup may not have achieved the desired effect. Since, in the end, they simply omitted the relevant findings from the paper altogether

Emphasis added.

As I said before, I found this odd in that the CDC did report an apparent association in the raw data. The total sample/unadjusted data. To repeat a quote by Mr. Thompson, “It’s all there!”

Destefano_table_4 highlighted

It’s numerically almost the exact same result as Mr. Wakefield says was concealed. So, if it’s the same, how is it concealed? How is it omitted? Answer: it isn’t.

Remember that quote attributed to William Thompson from the video? Here’s a more full quote that’s from the complaint:

You see that the strongest association is with those [autistic cases] without mental retardation. The non-isolated [sic], the non-MR [mental retardation]…the effect is where you would think it would happen. It is with the kids without other conditions, without the comorbid conditions.

Mr. Wakefield wanted us to believe that by switching to autism without MR instead of autism without MR and/or other disabilities, the CDC were covering up the result.  Not only did the CDC report on the result, this isn’t what Mr. Thompson was saying.  Thompson is not saying, “hey look, we only used MR as a way to conceal the result.” He’s saying, in effect: when we looked at autism without MR, we saw this effect. It looks to me like Thompson is drawing Mr. Hooker’s attention to a result in the paper. Not describing an omitted result hidden from the public.

So, what is it? Did the CDC “simply omit the relevant findings altogether” as Mr. Wakefield stated in his video? No, they didn’t. Don’t take my word for it, take the word of Andrew Wakefield and Brian Hooker. In their complaint they state

2.7. The Group further deviated from the Analysis Plan by limiting the “isolated” group to only those without mental retardation, as published in The Paper.

Emphasis added.

So, we in the autism communities get one story in the video (the result was omitted), but in a legal document he puts the truth (the result was published in the paper).

And, how did the CDC accomplish all this alleged cover up in the story told by Mr. Wakefield and Mr. Hooker? Well, in part the CDC supposedly did this by creating a “revised analysis plan”. From the complaint:

Over the ensuing months and in contravention of the CDC’s own policies,10 they deviated from the Analysis Plan and introduced a “revised analysis plan”11

Wakefield and Hooker can’t provide us with that revised analysis plan. Here is reference 11 noted in the quote above:

11 See original notes of Dr. William Thompson of 9.6.2001: “Get revised analysis plan from Tanya.” Tanya Bashin – a relatively junior member of The Group – was the second author named on the DeStefano 2004 paper. [Exhibit 8] The revised analysis plan itself is not available

I discussed this recently as well. It’s not after “ensuing months” that Mr. Thompson wrote about the “revised” plan. It’s not after the data were analyzed (which the earliest dates given by the complaint are in November).  The comment attributed to Mr. Thompson is dated September 6, 2001, the day after the plan was finalized.

Or, to put it another way: Mr. Wakefield and Mr. Hooker–the revised analysis plan is indeed available. It’s the one you are working from, dated Sept. 5, 2001.

In their complaint, Mr. Hooker and Mr. Wakefield disclose private details about Mr. Thompson which frankly have no real bearing on the complaint and should not have been disclosed.

The complaint is long, but it all hinges on the three major claims: (1) The CDC was supposed to do an analysis of the total group (not just the birth certificate group) by race, (2) that the CDC hid results on “isolated” autism and (3) that they deviated from their analysis plan, introducing a revised plan, to do this.

All three claims are false. And not false as in “I interpret them differently” but false as in “the very data Wakefield and Hooker depend on show them to be fabricated claims”.

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By Matt Carey

note– I made significant changes for clarity after this was first put online.

Globanews.ca reports:Health Canada seizes dangerous health product

20 Oct

The article is very short but the news is good–Health Canada has gone beyond issuing warnings about MMS (also known as CD protocol, CDS, Chlorine Dioxide Solution, Magic Mineral Solution). They have seized the product from one supplier:

According to Health Canada, MMS contains sodium chlorite, which is used as a textile bleaching agent and disinfectant. An alternate form of MMS, which is called CDS, is also being sold on the same web site. It would have the same risks associated with it as MMS.

Health Canada has now seized the product since sodium chlorite is not approved for human consumption.

If you have been using the product, it is recommended you stop immediately and go see your doctor.

MMS is a scam, plain and simple. And a dangerous scam. More discussion of it can be found at the Thinking Person’s Guide to Autism in: Dangerous Interventions: MMS and Autism by Emily Willingham, Ph.D..

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By Matt Carey

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