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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

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:

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

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

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

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

Jerry Seinfeld, the Broader Autism Phenotype and a Major Fail by some Parent Activists

15 Nov

Entertainer Jerry Seinfeld recently stated in an interview that “I think, on a very drawn out scale, I think I’m on the spectrum”.  And from this was spawned a small faux controversy which, if anything, exposes the problems we face as a community due to a lack of understanding and unity from my own fellow autism parents.

If you wonder what I mean by that, parents of kids with the more obvious challenges presented by autism (children like mine, for example) are sometimes wont to get very defensive should autism stories be framed around anything other than the challenges faced by us as parents and by our kids.

It’s not a position I take and, in fact, it is a position that causes our communities a great deal of harm.

Let’s take a look first at what Mr. Seinfeld had to say. He was being interviewed not about autism but about his web series. His autism statements come at about 3:30 in the interview. I can’t seem to get the interview to embed in this webpage so here’s the link:

When asked why he believes this way, he states:

You’re never paying attention to the right things.  Basic social engagement is really a struggle.  I’m very literal.  When People talk to me, and they use expressions, sometimes I don’t know what they are saying.

this last statement comes after a cut, perhaps some conversation, perhaps just dead time, we get:

But, I don’t see it as dysfunctional. I see think of it as an alternate mindset.

For anyone who has followed the online parent discussion, it isn’t surprising that these statements would cause a backlash. What was surprising was that this story got legs, as they say.

The Chicago Sun Times has Jerry Seinfeld’s ‘celebrity autism’ doesn’t help, by autism parent Marie Myung-Ok.

The Washington Post has For some parents of autistic children, Jerry Seinfeld’s self-diagnosis was ‘a slap in the face’.  This article starts by quoting a writer from the Age of Autism blog (Kim Stagliano), and also quotes the Sun Times article above.  Buried in the middle is some reason by John Robison.

What’s the “controversy”? Ms. Myung-Ok notes that in addition to Jerry Seinfeld’s recent statement, we have Temple Grandin as an example of an autistic adult. Then there are historical figures who some have speculated are autistic (Einstein, Mozart and Newton). Leading to a “fear”:

What I fear is that these public faces of autism will allow society, and more important, policymakers, mentally off the hook. You can have autism and get a Ph.D.! It helps you write jokes! Your charming quirks and aggravating behaviors are now explainable.

Here’s the thing. One can have autism and get a Ph.D.. And I that’s not speculation on my part. In 20 years since I received my Ph.D. (and the years getting my Ph.D.), I’ve met a few. Let’s take Ms. Myung-Ok’s example: Temple Grandin. There’s someone who has overcome some very significant challenges to get to where she is today. Do we discount those challenges, both the ones she faced growing up and the ones she faces now, because she has a Ph.D.? Does the DSM say anywhere, “Except for people who go to college”? No.

What about Ms. Stagliano, quoted in the Washington Post? What sent her into a “rage spiral”?

Some might label her reaction a “rage spiral,” but Stagliano, whose three teenage girls have autism, is not about to apologize. Like many parents of autistic children, Stagliano — the managing editor of the Age of Autism, which covers autism news — said she’s grown tired of people, particularly those in the public spotlight, making autistic symptoms sound fashionable

Here’s a point of fact that both Ms. Stagliano and Ms. Myung-Ok need to accept: one can be autistic and successful. And that in no way diminishes the challenges faced by autistics–both those few who achieve success and the many who do not.

Here’s how you keep stories of autistic adults from becoming one-dimensional stories of successful autistic people: You don’t try to shout down the discussion; you call for a more in-depth discussion.

Let’s take Mr. Seinfeld’s recent interview as an example. Recall that it wasn’t about autism. It was about his web series Comedians in Cars Getting Coffee. So there wasn’t a lot of space for an in-depth discussion of why he came to the conclusions he did or what he really means by his statements. Note that he didn’t say he’s autistic, he said, “I think, on a very drawn out scale, I think I’m on the spectrum”. That sounds to me more like broader autism phenotype (autistic traits but not enough to warrant an autism diagnosis). Wouldn’t it be great if instead of going into a “rage spiral” we got more information on what Mr. Seinfeld feels puts him somewhere on a “very drawn out” part of the spectrum? Much more, given his success, wouldn’t it be great if we could find out what he did to make those traits not dysfunctional for him? Perhaps we could learn a thing or two to help others in our community. Probably not my kid or Ms. Myung-Ok’s kid or Ms. Stagliano’s kids. You know what, some of the coping skills of other student’s in my kid’s school don’t help him either, even though they have very significant challenges. But, even if these coping skills don’t help our kids, all of autism is our community. Not just the parts that Ms. Stagliano and Ms. Myong-Ok want.

Once one got Mr. Seinfeld into this hypothetical in-depth interview, wouldn’t it be helpful if Mr. Seinfeld could talk about the disabling aspects of autism? To talk about the entire spectrum? Wouldn’t that help us all?

Consider how John Elder Robison spoke as quoted in the Washington Post:

“You have mothers of kids that have severe disability who can’t take care of themselves,” said Robison, who is autistic. “When Seinfeld becomes the visible face of autism, they feel like their kids are rendered invisible and unimportant. That said, just because he is seemingly financially successful, we don’t know if his private life is a living hell or a dream world. Robin Williams was another famous successful comedian that everyone loved and who supposedly had it all, and yet, he’s dead.”

The Washington Post article concludes with:

In an article she penned for Salon, Marie Myung-Ok Lee, a writer and parent of a child with severe autism, offers an altogether different solution:

“What I am proposing,” she writes, “is separating the high-functioning end of the spectrum — perhaps calling it something else — so that we can focus on the urgent and looming issue at hand.”

Actually, let’s take a look at the full paragraph on the Chicago Sun Times website

Being a parent of a child with severe autism in no way diminishes my respect and admiration for Jerry Seinfeld and others striving for autism acceptance. What I am proposing is separating the high-functioning end of the spectrum — perhaps calling it something else — so that we can focus on the urgent and looming issue at hand.

There are many things wrong in that short paragraph.

First–it is the most disabled in our community (both disabled adults and children) who need autism acceptance, and it should be those of us who care for them who should be calling for this. We need our children, our siblings to have the respect and dignity afforded to all people. We need this to protect them from abuse and so that society will provide the supports we are calling for.

Second, there are many “urgent and looming” issues. Not one. The needs of those with the most obvious challenges are diverse. But the needs of those in the “high functioning end of the spectrum” are great and real. Or, once again, “urgent and looming”. John Elder Robison put it much better than I at a recent IACC meeting. Earlier in that meeting we heard about the medical issues which are more prevalent in the autistic adult population, including a much higher rate of attempted suicide.

I’d say to the person who just suggested how much worse her own child was, the sad truth is my end of the spectrum where most autistic people kill themselves. I have lived with enough complications myself that I know the pain of this is very real everywhere on the spectrum and think frankly all of us are equally deserving of respect and recognition that our problems as autistic people are legetimate and real and all we should pull together to help, not fighting.

Lastly, let’s consider this question of whether to split the spectrum. It goes against decades of understanding of what autism is–a spectrum. This was demonstrated in the way that Asperger syndrome was acknowledged as a part of the autism spectrum.

Here’s one way to look at this: Just as I wouldn’t consider a general severely handicapped classroom appropriate for my kid (even though those kids have extraordinary needs), the supports (even if they are self-generated supports) needed by someone like, say, John Elder Robison are different from the supports I need (and, face it, we all need supports of some sort). It’s autism, not intellectual ability that is the defining factor. And we need to learn from each other and support each other.

As to the question of separating the autism spectrum, let’s consider the historical perception of autism. I suspect Ms. Myung-Ok is not aware that in, say, the 1950’s many kids whom she refers to as “severely autistic” would not be given the diagnosis at all.

A paper from 1981 discusses the question of how autism and intellectual disability (mental retardation) was handled in the decades after Kanner’s first description of autism.  In Infantile autism reviewed: a decade of research, the authors note that “For over two decades afterwards, diagnosticians generally believed that the presence of mental retardation ruled out the diagnosis of autism in the Kannerian sense, even if the child met all the behavioral criteria.”

DeMyer paragraph

For those who have been saying that autism is “defined by and diagnosed by behaviors” (an argument I’ve seen a lot in online parent discussions of how Mr. Seinfeld is not autistic). That’s not really accurate. Autism papers often have discussions of individuals where they need an expert opinion to make the final diagnosis. In other words, even though the individual may have scored on some test in the autism range, there’s more to the diagnosis than just a checklist.

Also, consider two examples. Let’s say I wake up one day and decide to mimic the behaviors of autism. Even if I can pull this off 24/7, I am not autistic. Now consider a related example: the individual who can mask his or her behaviors. Consider the DSM 5:

C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

Just because someone doesn’t show obvious behaviors of autism doesn’t mean someone is not autistic.

Readers here will likely recognize that I don’t spend much time in speculating on whether historical or public figures are/were autistic. I’ll break that for the moment with Mr. Seinfeld. Do I think he’s autistic? Not given the scant information available to us. Much more importantly, did he said he’s autistic? As I noted above, it sounds like he’s saying he’s broader autism phenotype. And, perhaps if we let him expand on his thoughts rather than shouting him down we as a community could benefit.

By Matt Carey

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.


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