ASAN Series: JRC Survivor Speaks Out

23 Nov

The Judge Rotenberg Center (JRC) is most infamous for it’s use of electric shocks as a behavior modification method.  But electric shocks are not the only aversive technique they use.  In a four part series, the Autistic Self Advocacy Network presents a rare insider’s view of life at the JRC.   So far three parts have been published.  But rather than wait for part 4, I’ve decided to post links to the articles now.

The series starts with this introduction:

The Judge Rotenberg Center (JRC) is a residential facility in Massachusetts where disabled residents are subject to electric shock, sensory assault, food deprivation, prolonged restraint and seclusion, and a host of other horrifying and aversive “treatments.” The United Nations has condemned the JRC’s treatment of its residents as torture, and disability rights advocates have been trying to get the facility shut down for over 30 years. The Autistic Self Advocacy Network has previously published an in-depth piece about the history and practices of the JRC, which you can read here.

This post is the first of a four-part series written by Jennifer, a survivor of the JRC. We are extremely grateful to have her permission to publish this brave account of her own experiences with the so-called “treatments” the JRC provides.

Here are links to the series so far:

JRC Survivor Speaks Out (Part 1)

JRC Survivor Speaks Out (Part 2)

JRC Survivor Speaks Out (Part 3)

By Matt Carey

Andrew Wakefield’s CDC Whistleblower documentary trailer. Words can not do this justice.

20 Nov feast-riot gear

Andrew Wakefield, the British former academic surgeon who fueled the MMR scare, has turned to film making as his career.  Someone chose Mr. Wakefield to manage the publicity for what they termed the “CDC Whistleblower” incident. to recap that: a William Thompson from the CDC had the extreme bad judgment to approach Brian Hooker with concerns about an old MMR/autism study.  Mr. Hooker is well known for his antagonistic stance on vaccines and his bad science attempting to link vaccines and autism.  Mr. Hooker published a (now retracted) study based on the information given to him by Mr. Thompson at CDC.  To publicize this “CDC Whistleblower” incident, Mr. Wakefield came out with probably the most over-the-top bad video I’ve ever seen.   It’s basically the Plan 9 From Outer Space of mini documentaries, complete with Mr. Wakefield’s voice over claiming that the CDC are worse that Hitler, Pol Pot and Stalin.  Those dictators, you see, were at least sincere in Mr. Wakefield’s view.

Well it seems Mr. Wakefield wants to expand the “CDC Whistleblower” story to a full documentary.  He has an indigogo campaign to raise funds. As of now, it has collected $2,213 of his $230,000 goal.

And now he has a trailer.  It is seriously worth a look.  And before you read my own commentary on this one.  Here, go ahead:

Thankfully it is not as long at the Hitler/Pol Pot/Stalin video so I could manage to watch it again.  Because on one view I just had to say–really? Is this for real?

We start out with a shadowy figure. Presumably an actor playing the role of the whistleblower (although, physically he looks more like Poul Thorsen than Mr. Thompson).

Feast-shadow figure

Interspersed with video of autistic kids in severe distress, we get images of police in riot gear.  Because, that’s what one does in a documentary, splice in footage that has nothing to do with the story, right?feast-riot gear

And, lest we forget, a helicopter.  Black.  Has to be black.  OK, it looks like only the bottom is black, but as that quick clip went by all I could think was “really?  A black helicopter? “

feast black helicopter

And in case we had any remaining thoughts that this was a documentary, enter the image of a house as seen through a sniper scope.  As the sniper scope zooms in we see that the target is an African American in a wheel chair.

feast sniper

Perhaps this is some sort of allusion to Mr. Wakefield’s first video, the Hitler/Pol Pot/Stalin video where he claimed that the CDC was engaging in a new Tuskegee experiment.   If so, why is the image of an African American female? I ask because the alleged controversy Mr. Wakefield is trying to highlight was about African American males.

The video ends with footage of parents telling us that vaccines cause autism and an actor (presumably representing the “whistleblower”) walking up some stairs.  Finally, Congressman Darrell Issa is shown banging a gavel at a congressional hearing.  From the start of these events, Mr. Wakefield and Mr. Hooker and their team have been calling for a congressional hearing.  I do hope they sent this video (and the Hitler/Pol Pot/Stalin video) to Mr. Issa’s office.  I have a feeling that since the time that Mr. Issa accepted $40,000 in donations from people seeking a congressional hearing, he’s learned a great deal and this video will further his education.

The sad part of this is the exploitative use of autistic children seen under severe distress.  This exploitation does nothing to serve the very real needs of our community.  Also seen towards the end are images of Avonte Oquendo, who went missing from his school and was found dead months later.  Again, exploitation which does nothing to serve our communities.  Mr. Wakefield is grabbing whatever film clips he can whether they are related or not to his purported story.  This is the same trick he used with a previous trailer he produced, where he spliced video from the Judge Rotenberg Center into a completely different story.

If Mr. Wakefield weren’t doing so much damage to my community, his videos would be laughably bad.  I’m not laughing.

By Matt Carey

Andrew Wakefield wants another appeal

20 Nov

Andrew Wakefield, the ex academic gastroenterologist who as much as anyone has promoted the failed autism/MMR link, has asked for an extension to file a petition for review.

To briefly summarize the events:
1) the BMJ and Brian Deer wrote a series of articles on Mr. Wakefield’s research.
2) Mr. Wakefield took issue with being called a fraud.
3) Mr. Wakefield filed suit in Texas claiming defamation
4) Mr. Wakefield was found to not have the standing to bring his case in Texas.
5) Mr. Wakefield appealed (4) and lost

Apparently, Mr. Wakefield needs to find yet another attorney to help with continuing his case.

As for my view:

What a pathetic waste of time. Mr. Wakefield has more gifts that my kid will likely ever understand and he’s thrown it all down the tubes. It’s difficult to not scream–just do something with your remaining years. You, Mr. Wakefield, are the reason why your accomplishments to date amount to nothing. Rather than throw your (or whoever’s) money down this rat hole of litigation, why not apply yourself to anything that will actually affect change in this world. You don’t have to change the whole world, just do something, anything, to justify all the skills you have and the resources that have been spent on you.

Clearly you didn’t excel at research. Nor writing. Nor film making. Nor autism advocacy. Perhaps a new career? It may not be as lucrative as getting my community to support you, but perhaps you could regain your self respect.


By Matt Carey

IACC Presentation by Lisa Croen: Psychiatric and Medical Conditions Among Adults with ASD

20 Nov

The last meeting of the previous Interagency Autism Coordinating Committee (IACC) was a workshop on under recognized co-occurring conditions in ASD. One of the speakers was Lisa Croen of Kaiser Permanente. She spoke about psychiatric and medical conditions among adults with ASD. Much of this work (and more) was presented as a webinar at SFARI. This work was also presented at IMFAR.

If you can find the time to watch the video (it’s 17 minutes long), it’s well worth it. This is the sort of work we just haven’t seen before now–a look at medical needs of autistic adults. If you don’t have that time, here are a few highlights.

First consider the sort of medical conditions that get a lot of attention in the pediatric population: Sleep, GI and immune. For the pediatric population, one can watch the presentation by the Lewin group that was also given at the IACC workshop: IACC Co-occurring conditions workshop: Lewin Group presentation on co-occurring conditions in autistic children in the U.S..

In adults, GI, sleep and immune conditions are found more often in the autistic population than in the general population. Moderately more often. Interestingly, thyroid conditions are 2.5 times more common (compare this to GI disorders, which are 1.3 times more common).

croen 3

By contrast, psychiatric conditions like anxiety, depression and suicide attempts are even more common in the autistic population. Schizophrenia is 22 times more common.

croen 1

Neurologic conditions are also more common in the autistic population. Parkinson’s is 32 times more common in autistics. Dementia is 4.4 times more common.

croen 2

This is the sort of work I’ve been calling for since even before I was appointed to the IACC. The autism parent community and the research community spends a lot of time talking about learning about kids and getting tools into the hands of pediatricians. But what about adults? We know that epilepsy often has an onset about puberty for autistic kids. We know that for another developmental disability, Down Syndrome, early onset dementia is relatively common. But what is going on right now with adults? What is do we, parents and autistics, have to plan around for the future?

If I recall correctly, the last comment I made as a member of the IACC had to do with this study.

Those are exactly the kind of things that frankly scare the heck out of me and I would like to know more about. And know there’s something on the horizon I need to know about and if there is a way to intervene with adults.


By Matt Carey

The Center for Personal Rights, another charity with rather high salary/revenue

19 Nov

Odds are you haven’t heard of the Center for Personal Rights. It’s a small organization recently formed to promote “vaccine choice”. If you’ve heard of the book Vaccine Epidemic, that’s their work. And, yes, a big piece of the “vaccine choice” movement involves promoting the failed “vaccines-caused-an-autism-epidemic” idea.

Tax forms are now available for the first three years of the Center for Personal Rights (2010, 2011 and 2012). The records show that they’ve pulled in a respectable $165,000 in that time, and revenues were up each year. By far the majority of revenue is from contributions/gifts/grants and not from sales of their book. Here are those tax forms

Center for Personal rights 2010 form 990

Center for Personal rights 2011 form 990

Center for Personal rights 2012 form 990

Let’s take a look at how much of the money taken in has gone to salaries of the board members. Well, board member, as it appears that the executive director, Louise Kuo Habakis, is the only one on the board being paid. Here are revenue and compensation:

2010:
Total Revenue: $42,072
executive compensation: $0

2011:
Total Revenue: $53,300
Executive compensation: $33,065

i.e. 62% of revenue went to board member compensation.

2012:
Total Revenue: $69,823
Executive Compensation: $74,355

i.e. 106% of revenue went to board member compensation.

Total for three years?
Revenue: $165,195
Board member compensation: $107,420

Or, 65% of revenue went to compensation of Ms. Hubakis. It’s a rather modest salary, but a large fraction of the revenue.

What else has the Center for Personal Rights accomplished?

Well, they held a rally ($23,788 in 2010)

They produced the book, Vaccine Epidemic, for which they list expenses of
$556 in 2010
$15,182 in 2011
$28,132 in 2012

So, that’s about $43k to produce the book. Much of that expense appears to be Ms. Hubakis’ compensation.

Here’s their list of program expenses for 2012.

Center for personal rights 2012 program expenses

From what I can tell, they took their total expenses for the year, including Ms. Hubakis’ compensation, and divided it by three and put that amount into each category. Hence my statement above that much of the expenses attributed to the book appear to be her compensation.

Their end of the year balances (net assets) have been declining:
$22,625 in 2010
$19,361 in 2011
-$1,220 in 2012

One might think they are on the way out. They would need a large infusion of cash to stay afloat. They still have a web presence and, well, Ms. Hubakis is a board member of Barry Segal’s “Focus Autism”. Mr. Segal and Focus Autism have distributed a significant amount of money to vaccine-antagonistic groups in recent years. And there are other wealthy people who contribute to such causes. So I wouldn’t count the Center for Personal Rights out just yet.


By Matt Carey

Thinking Person’s Guide to Autism: How ASAN Helped Issy Stapleton Get Justice

18 Nov

Isabelle (Issy) Stapleton is an autistic teenager. Her mother, Kelli, was recently sentenced in the attempted murder of Isabelle. The Thinking Person’s Guide to Autism has an interview with Autistic Self Advocacy Network’s Samantha Crane on How ASAN Helped Issy Stapleton Get Justice.

Here’s the TPGA introduction to the article:

Kelli Stapleton was recently sentenced to 10 to 22 years in prison for child abuse, after attempting to kill her autistic teen daughter Issy. We spoke with lawyer Samantha Crane, who is the Autistic Self-Advocacy Network’s Director of Public Policy, about ASAN’s efforts on the Stapleton case: both in helping the prosecution send the message that disability does not justify murder, and in urging the court to ensure Issy saw the same justice as any other victim of felony child abuse.

The full interview can be read at How ASAN Helped Issy Stapleton Get Justice


By Matt Carey

Autism and wandering, another story in the news

18 Nov

A news story from my old home town (as much as the LA area can be considered a “town”) brings up an important point: many of the issues that get advocate attention are not limited to children. Case in point: Police ask for help finding missing Redondo Beach man with autism.

A 61-year-old man suffering from autism was missing from the south Redondo Beach area, poilice said.

Yong Boo Keum was last seen in the south Redondo Beach about 10:30 a.m. Saturday. He went out for a walk and did not return home, according to a news statement from the Redondo Beach Police Department.

Keum has limited Korean and English language skills, and was described as a 5-foot, 1-inch tall Asian male with short black hair, brown eyes and weighing 95 to 100 pounds, according to the news statement.

He was last seen wearing a gray “LA” baseball cap, a navy blue windbreaker with “POLO” displayed on the front in white lettering, dark-colored jeans and possibly a gold-colored watch, according to the statement.

Police asked anyone with information regarding Keum’s whereabouts to call the Redondo Beach Police Department at (310) 379-5411.


By Matt Carey

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