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Pseudonymous blogging at Science Blogs is over

23 Aug

DrugMonkey over at Science blogs reports that the new owners of Science Blogs will not allow for anonymous/pseudonymous blogging in the future. In Pseudonymous blogging at Science Blogs is over he/she writes:

I have just been informed that ScienceBlogs will no longer be hosting anonymous or pseudonymous bloggers. In case you are interested, despite extensive communication from many of us as to why we blog under pseudonyms, I have not been given any rationale or reason for this move. Particularly, no rationale or reason that responds to the many valid points raised by the pseudonymous folks.

The blog Confessions of a Science Librarian also chimes in: Friday No Fun: Pseudonymous blogging no longer allowed at ScienceBlogs?

This is very problematic for me. The ability to speak freely and without fear of reprisal is the foundation and necessity of pseudonymous blogging. These bloggers work long and hard to establish the credibility and reliability of their online identities and shouldn’t be punished or banished because of it.

Science Blogs is now owned by the National Geographic Society. They have hosted anonymous articles on their own site (e.g. WHAT’S THE WORLD’S DEEPEST, DARKEST, DENSEST JUNGLE?). ScienceBlogs is now their property, and they can set the rules. I would hope that they would reconsider this, though. I prefer quality over non-anonymous information, frankly. The worst information I can find on the net, especially blogs, has names attached. Some excellent work has been produced under a pseudonym.

EpiGate: when blogging under one’s own name can be used against you

23 Aug

Some of the best early advice I received when I started online discussions about autism came from Autism Diva. In an exchange online, she told me that I was giving out too much private information and eventually it would be used against me or my family.

She would know. She had people show up at her home one time. Parents angry at what she wrote who wanted her to know that they knew where she lived.

The blogger Orac at Respectful Insolence has had repeated attempts to silence or hurt him. Most notable of these was an attempt last year by the Age of Autism blog to get Orac fired from his real-life job (discussed here and here). Luckily (a) Orac’s employers respect freedom of speech and academic freedom and (b) Orac’s employers can see through the false accusations that AoA fabricated. (sadly, many of the readers of AoA were unable to parse the confused logic of the post and bought into the story, resulting in them sending calls and emails to Orac’s employers).

Perhaps the most spectacular attempt to silence a blogger was levied against Kathleen Seidel. Ms. Seidel is probably the premiere blogger (in any field) that I am aware of. Her series have exposed some very unhealthy activity in the autism communities. Her work is scrupulously researched and referenced. She raised the ire of some people to the point that she was actually subpoenaed by Cliff Shoemaker (vaccine injury attorney) in a fishing expedition attempting to link her to being supported by pharmaceutical companies and/or political groups. It was the last desperate act of litigation that was about to close, and the subpoena was quashed.

Over the past few days, another story has played out. Liz Ditz discusses it in detail in A Public Servant, Blogging and Tweeting Under His Own Name, Has Been Silenced By His Employers. Orac has covered it in: The consequences of blogging under one’s own name.

Basically the story is this: EpiRen (blogger, tweeter, commenter, etc.) got into a disagreement with another person online. The other person ended up taking his opinion to EpiRen’s real-life employers. EpiRen’s employers have asked him to cease online discussions related to public health.

The Bully wins. It’s quite unfortunate. EpiRen has brought much good information to the online discussion. I must say I am disappointed in EpiRen’s employers. They have stated that EpiRen’s efforts reflect on them. I wonder if EpiRen were to face legal action for his online activities, would his employers aid in his defense? Would they do so for other employees? If not, perhaps they might reconsider what is free, individual, speech.

Loving Lampposts: now on Netflix

19 Aug

Been putting of watching Loving Lamposts, Todd Drezner’s film? Well, it’s now available for streaming on Netflix (possibly for DVD delivery too, I can’t tell for sure).

I discussed the film a number of times when it was released (Loving lampposts, Loving Lampposts: synopsis and director’s statement, Loving Lampposts video clips, and, after I was provided with a review DVD, Loving Lampposts, a review.)

Here are a couple of clips from the film:

Loving Lampposts Clip#1 from Cinema Libre Studio on Vimeo.

Loving Lampposts Clip #3 from Cinema Libre Studio on Vimeo.

In his recent Huffington Post article,Labeling Autism And Creating Community, Mr. Drezner takes on some of the questions posed by the proposed DSMV criteria for autism. Specifically, will some people lose their autism labels, and what does this mean.

A week of bad news

12 Aug

The past week has been a busy one. For me, personally, as you might have surmised from the lack of posts for a few days. But, in terms of news stories, specifically bad news stories, it has been busy.

Consider this one: Karen McCarron Seeks New Trial, Convicted of Killing Autistic Daughter. This article by Kristina Chew discusses a news story: Convicted child killer petitions court for new trial.

The story of Katie McCarron was discussed a great deal around the time that I was coming online to look for information. Here’s how the Star summarizes the story:

Five years ago, Karen McCarron, an Illinois pathologist, suffocated her three-year-daughter Katherine “Katie” McCarron with a plastic bag in her mother’s house. McCarron then drove the body of her daughter back home and put her to bed as if she were asleep. She was found guilty of killing Katie in 2008, sentenced to 36 years in prison and is incarcerated at the Dwight Correctional Center.

It is just a horrible story of a beautiful little girl who should be growing up. Back when this story broke, it affected many, including Kev and others on the Autism Hub, a great deal. He wrote about the story (see articles under the category Katie)and ended up in communication with Katie’s grandfather, Mike McCarron. Mike responded to the Autism Hub (From Mike McCarron to the Autism Hub).

Mike, I wish your family peace. I wish I had more to offer.

In another news story discussed by Kristina, Mother Kills Self, Autistic Son, In Despair Over School Placement, Kristina writes:

On August 2, the bodies of psychiatrist Margaret Jensvold and her 13-year-old, Ben Barnhard, were found in their home in Kensington, Maryland, an upper-middle class suburb of Washington, D.C. Jensvold, a Johns Hopkins-educated psychiatrist specializing in women’s health who worked at Kaiser Permanente, had left a note:

“School – can’t deal with school system,” the letter began, Jensvold’s sister, Susan Slaughter, told The Associated Press.

And later: “Debt is bleeding me. Strangled by debt.”

The story was carried by Forbes as Md. mom who killed son agonized over school costs.

A third story came out just over a week ago discusses the case of the death of Jawara Henry. The Wall Street Journal carried the story as Supervisor Is Charged in Death of Patient. The story opens with:

A supervisor at a state-run psychiatric center on Staten Island was charged Wednesday in the death last year of an autistic patient undergoing treatment at the facility, authorities said.

Erik Stanley, of Middletown, N.J., used excessive force when he subdued Jawara Henry on Dec. 4, 2010, at the South Beach Psychiatric Center, suffocating the patient with pressure on his neck and torso, Staten Island prosecutors said.

I find these stories obviously very troubling. I also find them very difficult to write about. How can we balance the need to discuss these stories and make it clear that these deaths were all needless, while keeping respect for those directly affected? A writer can try to inform. A writer can express personal outrage. A writer can also use other people’s tragedy for his/her own purposes. It is that third level that slows me down in responding to these stories.

What can I say? There is no reason for Katie McCarron, Margaret Jensvold, Ben Barnhard or Jawara Henry to be dead. There is no excuse, no rationale which explains these events. I wish their families well. I wish them peace. I hope for justice.

Congress delays hearing on autism bill

2 Aug

The Santa Monica Dispatch is reporting that committee hearings on the Combating Autism Reauthorization Act have been pushed off to September:

e U.S. Senate Health, Education, Labor and Pensions (HELP) Committee has just announced that it is postponing a meeting on the Combating Autism Reauthorization Act (CARA) until September 7. The meeting had been scheduled for this Wednesday August 3, but Congress is apparently so exhausted by its represensible behavior during the debt ceiling debate that it’s giving itself a five-week recess. With pay.

http://www.santamonicadispatch.com/2011/08/congress-delays-hearing-in-autism-bill/

The Combating Autism Act reinstated the Interagency Autism Coordinating Committee (IACC) which creates a strategic plan for autism research in the US. More importantly, the CAA authorizes congress to appropriate money for autism specific research.

The CAA is set to end (sunset) on September 30. This leaves very little time from committee hearing to any potential vote by the legislature.

Another manufactured controversy

26 Jul

People are mad at Brian Deer. Really mad. His work uncovered a number of facts behind Andrew Wakefield’s research and business interests. These facts, these actions by Mr. Wakefield, led to many of the problems Mr. Wakefield has suffered in recent years. It is understandable that people are mad at Brian Deer. Andrew Wakefield is rather important to the groups who believe that vaccines caused an epidemic of autism. Mr. Wakefield is the researcher who took the parent’s hypothesis and put it into a prestigious medical journal. Mr. Wakefield has good credentials, and demeanor which makes for excellent TV footage. It is difficult to listen to him and think, “here is a man who lied to the world, caused a fear of the MMR vaccine and vaccines in general, and hid not only his faulty research, but other ethical lapses and shortcuts taken along the way”.

Difficult, but not impossible. The U.K.’s General Medical Council decided that contrary to what Mr. Wakefield had to say in his defense, he had misrepresented his work, he had taken many ethical shortcuts. While the GMC wasn’t interested in the vaccine fears promoted by the faulty, even fraudulent research, the GMC did find Mr. Wakefield guilty of ethics violations, research misconduct and dishonesty and had him struck off the U.K.’s medical register.

And, yes, it was the facts that led to the downfall of Mr. Wakefield. But, that doesn’t shield the messenger. In this case, Mr. Deer. Well, he was more than the messenger. He uncovered the facts as well as presented them.

One thing Mr. Wakefield’s supporters are mad about is the fact that Mr. Deer interviewed one parent using a pseudonym. He presented himself as “Brian Lawrence”, not “Brian Deer”. This is not news, having been in the press for at least 7 years. Much more to the point, it isn’t even a controversy, as I’ll show below. But, it is blog fodder. Apparently enough for Dan Olmsted of the Age of Autism to put out 3, count them 3, articles on the subject.

Since AoA have discussed Mr. Wakefield and Mr. Deer on their blog, it is not surprising that people came here looking to see if there would be a response to Mr. Olmsted’s pieces. There was a time when I read the Age of Autism blog, so perhaps, just perhaps, I was aware of the articles. In a comment on my piece, My comment to the IACC, I got the following

Jim Thompson, frequent commenter here, wrote:

Sullivan:

It seems that your interests parallel those on AoA with a major exception. Have you read this?

See “I was visited yesterday, Friday 28th November 2003 by Brian Lawrence…” at http://www.ageofautism.com/201…..dical.html

I used to get a lot of comments like that. Thread-jacking comments pointing me to one blog or another where some heated discussion was supposedly going on. I pulled the comment this time. In this case I felt it justified. The article it was attached to had nothing to do with the subject of the comment. In fact, to be blunt, I found it both ironic and insulting that the comment was attached to that piece.

Yes, my piece asking for research into better medical care for autistics is so like rehashing the “Brian Deer used a pseudonym” argument. If anything, this serves to show the differences between the Age of Autism and Left Brain/Right Brain. Differences which are becoming more pronounced with time. I’m pushing for a better future. They are rehashing their failures of the past.

Believe me, when I first heard that Brian Deer used a pseudonym in order to obtain an interview, I looked into the question. I asked a simple question: can a journalist lie to a source and if so, when?

The answer is, yes, a journalist can lie. As to when: there are two criteria that must be met. First, there must be a pressing need for the public to obtain the information. Second, the information is not expected to be obtainable by straightforward means.

Let’s consider the news investigation into Mr. Wakefield’s research. It is clear that there was a pressing need for the public to know whether the details were being accurately presented. Mr. Wakefield’s research was creating a fear of vaccines in general, and the MMR in specific. The vaccination rates were dropping to dangerously low levels, presenting a public health hazard. An investigation into the research, even if it required suberterfuge, was warranted, as long as the second criterion was met: there must be a valid expectation that the information would be obtainable by straightforward means.

OK, so point one is met. Let’s look at point two. Mr. Olmsted gives us insight into that question himself:

Deer had written a number of critical articles about parents’ claims of vaccine injury, and if he gave his real name, he doubtless feared, Child 2’s mother would not agree to talk to him. Once she checked his blog, she would be more likely to kick him out of the family home than sit still for what turned into a six-hour inquisition.

Mr. Deer is also described by Mr. Olmsted as being considered at the time of the interview as “a journalist notoriously hostile to people who claimed that vaccines had injured their children. ”

Clearly, the second point is met as well: the information was not expected to be obtainable by straightforward means

Mr. Olmsted is, no doubt, quite aware of the ethics of such methods. The Society of Professional Journalists have the following rules (emphasis added):

Journalists should:
— Test the accuracy of information from all sources and exercise care to avoid inadvertent error. Deliberate distortion is never permissible.
— Diligently seek out subjects of news stories to give them the opportunity to respond to allegations of wrongdoing.
— Identify sources whenever feasible. The public is entitled to as much information as possible on sources’ reliability.
— Always question sources’ motives before promising anonymity. Clarify conditions attached to any promise made in exchange for information. Keep promises.
— Make certain that headlines, news teases and promotional material, photos, video, audio, graphics, sound bites and quotations do not misrepresent. They should not oversimplify or highlight incidents out of context.
— Never distort the content of news photos or video. Image enhancement for technical clarity is always permissible. Label montages and photo illustrations.
— Avoid misleading re-enactments or staged news events. If re-enactment is necessary to tell a story, label it.
— Avoid undercover or other surreptitious methods of gathering information except when traditional open methods will not yield information vital to the public. Use of such methods should be explained as part of the story
— Never plagiarize.
— Tell the story of the diversity and magnitude of the human experience boldly, even when it is unpopular to do so.
— Examine their own cultural values and avoid imposing those values on others.
— Avoid stereotyping by race, gender, age, religion, ethnicity, geography, sexual orientation, disability, physical appearance or social status.
— Support the open exchange of views, even views they find repugnant.
— Give voice to the voiceless; official and unofficial sources of information can be equally valid.
— Distinguish between advocacy and news reporting. Analysis and commentary should be labeled and not misrepresent fact or context.
— Distinguish news from advertising and shun hybrids that blur the lines between the two.
— Recognize a special obligation to ensure that the public’s business is conducted in the open and that government records are open to inspection.

As an aside: consider the rules above and Mr. Olmsted’s reporting on autism. “Distinguish between advocacy and news reporting”. “Test the accuracy of information from all sources and exercise care to avoid inadvertent error. Deliberate distortion is never permissible.” and more…

Back to the question of whether it is permissible to use “surreptitious methods of gathering information” in obtaining a story. Aside from these being the published rules of the Society of Professional Journalists, Mr. Olmsted is likely well aware of the method. Back when he was at UPE, Mr. Olmted’s journalism partner on what may have been his real intro into medical news reporting (a series on Lariam) was a gentleman named Mark Benjamin. Mr. Olmsted included Mr. Benjamin in the dedication of his book, “The Age of Autism”.

I believe that this is the same Mark Benjamin who went on to write a series for Salon.com called “Getting straight with God“, a “four-part investigation into the Christian netherworld of “reparative therapy,” a disputed practice to convert gays and lesbians into heterosexuals. ”

How did Mark Benjamin, a straight man, obtain the information he needed for the story? ” I told Harley I was gay, although I am straight and married. I used a fake name. ”

He flat out admits, he lied:

When I arrived in Levy’s office, I was asked to fill out roughly 15 pages of questions about myself and my family. Mostly the questions centered on how I got along with my folks. In a section about my problems, I wrote “possible homosexuality.” The fact is, I’m straight, I’m married to a woman, and I have a 3-year-old daughter and a son due in October. I wrote on the form that that I was married with a kid. But I lied and said I was also living a secret life, that I harbored homosexual urges.

This is why I’m calling this out as a manufactured controversy. Brian Deer interviewed someone using a pseudonym. He misrepresented himself. It happens in journalism. It not only happens, it is clearly allowed under specific circumstances. As a journalist, a journalist whose colleagues have used the same techniques, Mr. Olmsted should be quite aware of this.

et

Grand Jury says special education underfunded

1 Jul

This sounded like it could be a good news story. Grand Jury says special education underfunded is a news story out of Ridgecrest California. (If you aren’t familiar with the geography, Ridgecrest is in the southern part of the Owens River valley north of LA in what would be a desert/rural area except for China Lake military base and Edwards Air Force Base).

I was hoping for something in the story pointing out that the amount of money going into Special Education was too low. Not that I want to hear that our good friends in Ridgecrest but, hey, I assume they aren’t getting the funding they need in these tough times.

The story starts out with the cost of Special Ed in the district:

The Sierra Sands Unified School District spent nearly $4.14 million for special education, and nearly $421,000 came from the district’s general fund, according to a just-released Kern County Grand Jury report. The district also spent nearly $11,000 for transportation.

They then make a statement I see all too rarely:

The report said the children of California are entitled to a free and appropriate education by court and legislative mandate.

They got it right. The children of California are entitled to a free and appropriate public education (FAPE). Not “the special education students” as is all too often the focus. No, all children are entitled to FAPE.

We just don’t hear people complaining about the mandate to provide FAPE to non special ed students. And this is where the story starts down that path:

“Like many mandates, the mandating authorities do not fully fund the mandated services,” the report stated. “In 2010-11, the Kern County Grand Jury studied all of the school districts in Kern County to determine costs above and beyond the funds that come to them from the state and federal governments for special education.”

Guess what. The districts pay more for regular students than they get from state and federal government allotments, too. Heck, from what I’ve seen, the state and federal governments don’t live up to their commitments to the mainstream population either, leaving the local governments to backfill.

The term “unfunded mandates” is used a lot. In some ways, it might be better if the IDEA hadn’t promised any money to the local school districts. That way the focus would be on the term “mandated”, not “unfunded”. Then we could ask a simple question: why does the federal government have to mandate that special education students receive an appropriate education? Shouldn’t it be just assumed that all children have a right to an appropriate education? Why do we even question this for special ed students?

You can read the rest of the story. It’s short. But again, I have to ask, why do we have to mandate an appropriate education for special education students? Why single them out? Everyone deserves an appropriate education.

A Controversial Autism Therapy Unravels a Family

27 Jun

Time magazine has picked up a story from a six-part investigation by the Detroit Free Press.

Some unproven psychological therapies and techniques for autism aren’t simply ineffective. They can split families and cause untold harm to children, as one family in Michigan learned at terrible cost.

If you are new to the story, let me point out that it isn’t what you might think. It is about facilitated communication and a false charge of sexual abuse.

It’s a story one might think would be out of the 1990’s. Except that it just happened.

The ordeal didn’t end when it was clear that the girl wasn’t communicating, after all. It didn’t end when a sexual assault exam found no proof of abuse. And it didn’t end when a prosecution witness insisted the abuse never happened.

The Time story is here : http://healthland.time.com/2011/06/24/a-controversial-autism-therapy-unravels-a-family/

The Free Press story here: http://www.freep.com/article/20110612/NEWS03/106120522/Family-s-life-unravels-claims-dad-raped-daughter

ACTION ALERT: What Does Community Mean To You? Let Medicaid Know!

11 Jun

Here is an action alert from the Autistic Self Advocacy Network (ASAN)

What does community mean to you? For some people, this question doesn’t mean much but for the hundreds of thousands of Americans receiving Medicaid Home and Community Based Services (HCBS), the meaning of community has huge implications. Last year, the State of Missouri attempted to use Medicaid dollars allocated to serving individuals with disabilities in the community for the construction of group homes on the grounds of an institution. The Center for Medicare and Medicaid Services (CMS) quite rightly refused to allow Missouri to use Medicaid HCBS funding for this plan, as the purpose of the HCBS program is to help people avoid institutionalization, not to support settings that further segregate people from their communities.

Now our friends at CMS are trying to put in place strong minimum standards for HCBS settings, to prevent what almost happened in Missouri from occurring in the future. CMS has proposed regulations which would prevent HCBS dollars going to institutional facilities, settings which are on the grounds of an institution, settings which are segregated on the basis of disability and settings which have the characteristics of an institution, such as lack of privacy or rules about when people can eat and sleep. This is an unprecedented opportunity for the disability community to support a real minimum standard for community living.

We need your help to make these standards a reality. CMS’ proposed rulemaking (available here) is only open for comments for four more days (it closes this Tuesday, June 14th at 5 PM) and we know that the usual suspects in the institution and nursing home industry have already written in opposing any standards for how HCBS dollars are used. We need people to write in to tell CMS that community living does not occur on the grounds of an institution and doesn’t include arbitrary restrictions on the rights of people with disabilities.

Here’s what you can do:

1. Write in to CMS and tell them that you SUPPORT the proposed rulemaking by going to: http://www.regulations.gov/#!submitComment;D=CMS-2009-0071-0302

2. Don’t hesitate to add in your thoughts about what Community should mean and make suggestions about things that CMS could add to their proposed rulemaking. If you’re looking for ideas, don’t hesitate to use ASAN’s comments as an example. You can feel free to use our language if it makes it easier. Our comments are available here: http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=153

3. Send a copy of this advocacy alert to your friends and colleagues encouraging them to write in too – the more people who write in – be they people with disabilities, parents, professionals or just supportive allies – the stronger our position will be. Help us get the word out!

Remember to write in by THIS TUESDAY June 14th at 5 PM. This is a critical opportunity to have our voices heard and we shouldn’t let it pass us by. Remember, Nothing About Us, Without Us!

Regards,
The Autistic Self Advocacy Network

Panorama captures torture and abuse in UK care homes

1 Jun

I try and watch programmes about special needs issues if I can. It helps to stay abreast of the latest issues in the wider special needs community.

However, last nights Panorma I had already decided I simply couldn’t watch.

In one scene in the programme, a male support worker seems to goad a female patient to throw herself out of a second-floor window. He says: “Go on, do it now I’m here. I’d love to see you try it: you will go flying. … When you hit the floor, do you reckon you will make a thud or a splat?”

In another scene, a second male support worker is seen to act as a Nazi camp commandant, repeatedly slapping a patient across the face with a pair of leather gloves and saying: “Nein, nein, nein!”

Staff, sometimes with qualified nurses watching, used forms of restraint that an expert described as closer to martial arts rather than any approved technique. A female patient is seen pinned beneath a chair for more than 30 minutes with one support worker sitting in the chair and keeping his foot on her wrist, while a second worker kneels on her legs.

Source.

The patients in this case are mentally ill people, people with learning difficulties and people with autism.

What I did watch – for awhile – was the Twitter stream of people reacting to the programme but when it became clear that the programme was just as awful as I thought it might be I simply had to turn that off too.

Maybe you’re stronger than me. If so, theres an example of the sort of thing Panorama captured here.

Whether you watch it or don’t, pass it on to others to watch. Maybe those who aren’t aware will realise that for those of us with friends and relatives with special needs, this issue is of paramount importance.