Final Reminder: 2014 IACC Call for Nominations Closes Friday, November 14, 2014!

13 Nov

The email below was just sent by the Office of Autism Research Coordination to remind the communities that the Interagency Autism Coordinating Committee is being reformed–nominations are still open but only until tomorrow.

In other words: if you want to be considered, or if you want to nominate someone else for consideration, now is the time to get those nominations in.

From OARC:

Final Reminder: 2014 IACC Call for Nominations Closes Friday, November 14, 2014!

Only one more day to send in submissions!

The Office of the Secretary of Health and Human Services (HHS) is seeking nominations of individuals to serve as non-federal public members on the Interagency Autism Coordinating Committee, a federal advisory committee established in accordance with the Combating Autism Act of 2006 (Public Law 109-416, PDF – 49 KB) and reauthorized by the Autism Collaboration, Accountability, Research, Education and Support Act of 2014 (Public Law 113-157, PDF – 211 KB).  The Committee, composed of federal officials and public stakeholders, provides recommendations and advice to the Secretary of HHS regarding issues related to autism spectrum disorder (ASD), including ASD research and services activities.

The Office of the Secretary of HHS has directed the Office of Autism Research Coordination to assist the Department in conducting an open and transparent nomination process. Nominations of new public members are encouraged, and current members may also be re-nominated to continue to serve. Self-nominations and nominations of other individuals are both permitted. Final selections and appointments of public members will be made by the Secretary. The period of service will be from the time of appointment through September 30, 2019.

The call for nominations opened on October 1, 2014 and will close at the end of the day (11:59 p.m.) on November 14, 2014. Please ensure e-mails or standard mail/Fedex are sent and date and time stamped by the given deadline.

Please click on the links below for information about the committee, and the requirements and instructions for submitting a nomination.

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.


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

By Matt Carey

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

7 Nov Salary Fraction

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.


By Matt Carey

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.


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


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.

By Matt Carey

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