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When Children Die, It’s Time to Grieve and to Reflect, Not to Scapegoat

15 Dec

Autistic Adult Rachel Cohen-Rottenberg has written about the Newtown shooting at Sandy Hook Elementary in:

When Children Die, It’s Time to Grieve and to Reflect, Not to Scapegoat
December 15th, 2012 by Rachel Cohen-Rottenberg

Yesterday morning in Newtown, Connecticut, a young man murdered 20 children at the Sandy Hook Elementary School, along with six adults, having already killed his own mother. When I saw the news, I broke down and cried. All I could say, over and over, was Why would anyone kill little children? How could anyone do such evil?

Given the speculation that the killer was autistic, it is important that autistic voices be heard, autism community voices be heard.

The full article at When Children Die, It’s Time to Grieve and to Reflect, Not to Scapegoat

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By Matt Carey

AWN’s Appeal to Media Sources Covering Newtown, CT

15 Dec

The Autism Women’s Network (AWN) ha issued an appeal to media sources covering the Newtown shooting story.

AWN’s Appeal to Media Sources Covering Newtown, CT
There is no evidence linking planned criminal violence to autism.
With the tragic events unfolding regarding the recent school shooting at Sandy Hook Elementary, we here at Autism Women’s Network send our heartfelt condolences to all the families. It is unimaginable what they are going through at this time. The loss of so many innocent lives is unspeakable and heartbreaking.

With a few media sources reporting that the shooter is on the autism spectrum, we want to make an appeal that reporters and news outlets tread carefully in this regard. First, nothing has been confirmed about any possible diagnosis the shooter may have had.

Secondly, there is zero evidence linking planned crimes to autism. It cannot be stressed enough that autistic people, as well as all people with disabilities, are more likely to become victims of violence and crime rather than the perpetrators of such: Crime Victims with Developmental Disabilities.

Please remember that attempts to link a population of people to a particular crime is stigmatizing and damaging. The lasting affects cause incomparable harm and hurts autistic people. We appeal to all media and news agencies to use great care in reporting the facts as well as how the facts are framed. We ask that you practice responsibility in your media coverage. Any insinuation that autism is the cause of planned criminal violence is wholly inaccurate, as there is no evidence to support this assumption.

At this time, our attention is focused on those who lost their lives and their families. We extend our deepest sympathies and continued thoughts of comfort.

Respectfully,

AWN Board of Directors: Sharon daVanport, President — Corina Becker, Vice President — Mara Fritts, Secretary & Treasurer — Lori Berkowitz, Director of Web Development

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By Matt Carey

Mother with Asperger Syndrome Grieves Sandy Hook Elementary Victims

15 Dec

Paula C. Durbin-Westby is an autistic adult who has offered some views as an autistic (Asperger syndrome), as a parent and as an autistic parent on the shooting in Connecticut in Mother with Asperger Syndrome Grieves Sandy Hook Elementary Victims .

It begins:

Today, December 14, 2012, I got a text about four minutes before I walked into my son’s school to play the piano for a winter program. The text said that 18 (then up to 20) children had been killed at an elementary school, not unlike my son’s. Children the age of the children I would be making music with in a few minutes. I was in shock. The texts I was receiving came from my dear brother, who has small children of his own. Since I was not online or near any media sources, he wrote to me what I was seeing on breaking news, and we texted together, as parents, about how horrible, how unthinkable, this heinous act was. His children were with him; mine was in school, and I had to resist an overwhelming impulse to sign him out and leave.

The full article is at Mother with Asperger Syndrome Grieves Sandy Hook Elementary Victims .

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By Matt Carey

Autism Speaks: Statement on Newtown, Connecticut

15 Dec

Autism Speaks has issued the following statement on the Coonecticut school shooting yesterday:

Statement on Newtown, Connecticut

Statement on Newtown, Connecticut

Our hearts go out to the families and town of Newtown, Connecticut in the wake of this heartbreaking event. Several media outlets are reporting that the shooter might have had an autism spectrum disorder. Some have also inaccurately reported that there is a linkage between autism and planned violence. We ask that blame not be placed on people with disabilities or disorders in the midst of these types of tragedies and that everyone keep the families of Newtown in their prayers.

Elizabeth Feld
President, Autism Speaks

Edit to add: I posted this statement in full without asking permission of Autism Speaks. It is short enough to make it difficult to pull sections out for a discussion. I greatly appreciate Autism Speaks making this statement. I am not associated with Autism Speaks (or any autism organization).

Autism Society: No Linkage Between Autism and Planned Violence

15 Dec

The Autism Society of America issued a statement yesterday on the Connecticut school shootings: Autism Society: No Linkage Between Autism and Planned Violence

Autism Society: No Linkage Between Autism and Planned Violence

December 15, 2012
By Autism Society

Yesterday, 26 people lost their lives through the acts of a single person. These 26 people were children, teachers, husbands, wives, mothers, fathers, brothers, and sisters.  Today, their families are experiencing grief that can’t be described.  Our thoughts and prayers are with all those impacted by yesterday’s tragic shooting.

 The statement notes that many news outlets are reporting the speculation that the shooter was autistic and that “There is absolutely no evidence or any reliable research that suggests a linkage between autism and planned violence. ”

The statement goes on to state:

Please do not judge any individual with autism based on what is being said about a killer of innocent children and teachers.  Rather, our nation’s attention must be focused on being there for the children and teachers whose lives were lost yesterday

The full statement can be found at: Autism Society: No Linkage Between Autism and Planned Violence

(Note: I originally posted the statement in full. I did not request permission to do so, so I have edited this article)
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By Matt Carey

ASAN Statement on Media Reports Regarding Newtown, CT Shooting

15 Dec

The Autistic Self Advocacy Network (ASAN) has issued a statement on the school shooting in Connecticut yesterday:

ASAN

Statement on Media Reports Regarding Newtown, CT Shooting

December 14, 2012
In response to recent media reports that the perpetrator of today’s shooting in Newtown, Connecticut may have been diagnosed on the autism spectrum or with a psychiatric disability, the Autistic Self Advocacy Network (ASAN) issued the following statement today:

“Our hearts go out to the victims of today’s shooting massacre at Sandy Hook Elementary School in Newtown, Connecticut and their families. Recent media reports have suggested that the perpetrator of this violence, Adam Lanza, may have been diagnosed with Asperger’s Syndrome, a diagnosis on the autism spectrum, or with another psychiatric disability. In either event, it is imperative that as we mourn the victims of this horrific tragedy that commentators and the media avoid drawing inappropriate and unfounded links between autism or other disabilities and violence. Autistic Americans and individuals with other disabilities are no more likely to commit violent crime than non-disabled people. In fact, people with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators. Should the shooter in today’s shooting prove to in fact be diagnosed on the autism spectrum or with another disability, the millions of Americans with disabilities should be no more implicated in his actions than the non-disabled population is responsible for those of non-disabled shooters.

Today’s violence was the act of an individual. We urge media, government and community leaders to speak out against any effort to spuriously link the Autistic or broader disability community with violent crime. Autistic Americans and other groups of people with disabilities persist in facing discrimination and segregation in school, the workplace and the general community. In this terrible time, our society should not further stigmatize our community. As our great nation has so many times in the past, let us come together to both mourn those killed by acts of heinous murder and defend all parts of our country from the scourge of stigma and prejudice.”

Media inquiries regarding this shooting may be directed to ASAN at info@autisticadvocacy.org.

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By Matt Carey

Missing Family With “Suicide Pact” Due To Autism Costs

3 Dec

This story reminds me of another story from years back. But it is happening now. The story, Missing Family With “Suicide Pact” Due To Autism Costs, is out of Melbourne Florida:

MELBOURNE, Florida — A Florida MISSING CHILD Alert has been issued for Kiah Firth, who was last seen wearing an all pink sundress with flower print and Kristin Firth, who was last seen wearing a dark blue sundress with a belt and a bowtie in the back.

Why are they looking for these children?

Law enforcement says that the “suicide pact” was the result of James and Mai Firth’s frustration that “Kristen’s” Autism is expensive to treat. James and Mai Firth stated they would kill the children and themselves if “the money ran out” or “Kristen” didn’t show improvement during treatment

Mai, your daughters are beautiful and only two and four years old.  You have no idea of their potential to be happy. Please, if this suicide pact is anything real, hand your children off to someone who will see that they are cared for.

The story gives pictures and descriptions of the family members and a description of their car:

The family may be traveling to San Francisco, California to board an international flight to Vietnam. The family is riding in a silver 2002 Lexus SUV, Florida license plate 612PGW, which is registered to James Firth.

If you have any information regarding the whereabouts of this family, please call the Melbourne Police Department at 321-409-2200, or Crimeline: 1-800-423-TIPS (8477), or the National Center for Missing and Exploited Children: 1-800- THE-LOST (1-800-843-5678).

There’s a lot that could be said at this point. But keep in mind that this is a Google news listed site and consider encouraging the family to not follow through on the pact. I hope that by running they are indicating that they are just planning to return to Vietnam.

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By Matt Carey

Brian Deer: VanDerHorst-Larson: misinformed mother scatters food for the birds

19 Oct

Brian Deer recently lectured at the University of Wisconsin La-Crosse on his journalism involving Andrew Wakefield’s research efforts and the improprieties found in those efforts. Not surprisingly, this led to a response by Mr. Wakefield and his supporters. I’ve pretty much given up on fact checking their complaints. Or, in this case, even really reading them.

But, complaints were made and, in this case, Mr. Deer has responded. His written response as VanDerHorst-Larson: misinformed mother scatters food for the birds.

Mr. Deer introduces his article with these paragraphs:

After the collapse of what was only ever a fringe campaign in the United States, claiming that vaccines were responsible for an epidemic of autism, small groups of ill-informed, misguided and sometimes frankly malicious, people became desperate for attention. This led to a barrage of emails – often abusive or crammed with hate speech – to university staff following my October 2012 lectures in Wisconsin.

The complaint below by one Jennifer VanDerHorst-Larson, who said she was founder of something she called the “Canary Party”, was one of the few that didn’t ooze with personal bile. But even she hadn’t checked her facts.

Ms VanDerHorst-Larson’s complaints are numbered, and I respond beneath each.

An example of such a complaint, with a partial quote of Mr. Deer’s response is given here:

8. Mr. Deer also failed to disclose that there were no complaints against Wakefield by the children’s families, most of whom very strongly support him, and many of whom credit his team with a diagnosis that led to effective treatment of their children’s bowel disease.

The father of the only child in Wakefield’s series who was not entered in (failed) UK compensation litigation described Wakefield’s reporting in the Lancet as “a clear misrepresentation of my son’s history” and “an outright fabrication”.

If you wish to read a point by point response, again, the link is VanDerHorst-Larson: misinformed mother scatters food for the birds.

Andrew Wakefield tries to make himself relevant again

2 Oct

Andrew Wakefield is the former research surgeon who championed the idea that the MMR vaccine causes autism. Multiple researchers have told me that even at the time of Mr. Wakefield’s first research announcements, Mr. Wakefield’s idea was a stretch in terms of biological feasibility. For a few years at least, Andrew Wakefield was relevant in the autism research community. People worked to replicate his findings and otherwise answer the questions he posed. That was years ago. The result is we now know his ideas of persistent measles infection and a leaky gut causing autism were not valid and that, at best, Mr. Wakefield was a mediocre scientist who took this poorly conceived hypothesis and ran with it. Running as in a “running with scissors”, ignoring safety. As has been demonstrated since, he was also ignoring ethical concerns as well. But this is all old news.

In 2004, yes 8 years ago, Brian Deer exposed many of the ethical lapses in Mr. Wakefield’s autism career. Since then we’ve heard a lot of words from Mr. Wakefield about how it is all about the children, but seen a lot of his actions more akin to it being all about himself. He sued Mr. Deer over those 2004 reports (how is that helping autistics?). Mr. Wakefield abandoned his suit (how is that helping autistics?). Mr. Wakefield asked that the GMC look into the possible charges stemming from the reported actions (OK, that helps autistics a little by exposing Mr. Wakefield’s ethical and scientific deficiencies better, but that wasn’t exactly his intention). Mr. Wakefield attended the GMC hearings even though he sayed he didn’t need his medical license (registration) any more. This provided a great deal of drama (again, how does this help anyone but Mr. Wakefield?) but not much advancement. Mr. Wakefield was struck off the register (which could be argued helps autistics in a small way). Mr. Wakefield appealed and then dropped his appeal of the GMC decision. When Mr. Deer wrote more articles, this time for the BMJ, Mr Wakefield filed a complaint with the PCC (press complaints commission) in the UK, but he appears to be not pursuing that. Just letting it exist as a complaint (again, benefit?). Then, this year, he chose to sue Brian Deer, the editor of the BMJ and the BMJ itself this year for defamation over another set of articles and public statements (again, to what benefit to autistics?).

Mr. Wakefield’s latest day in court was short, but likely expensive. A judge in Texas ruled that Mr. Wakefield doesn’t have the standing to bring that case to trial.

Recently Mr. Wakefield appealed. Which, frankly, was enough of a non event in my view that with Respectful Insolence covering the discussion I felt no need to.

In the past eight years we can point to no advances in autism research championed by Mr. Wakefield, but we can (and just have) point to numerous occasions of Mr. Wakefield use procedural methods to keep himself in the news.

Mr. Wakefield claims essentially that calling him a fraud is defamatory. Which brings up the part of recent events that I did find interesting. Again at Respectful Insolence, in Time to rally the troops against the antivaccine movement, Orac calls on people to, well, rally. I’ll stand apart from Orac on this one. Frankly, making this appear to be a controversy, adding drama, is not helping matters.

One might rightly ask, why write about this at all? Why spend time on a topic which has obviously become irrelevant? In setting up his press conference Mr. Wakefield (through his team) made a bit of a poor move.

Mr. Wakefield’s approach to the discovery of his ethical and scientific failings has been to deny even the most clear facts. For example, when presented with direct evidence that he had major financial interests in creating a viable court case out of the MMR/autism hypothesis (being a paid expert witness, creating test kits with the idea that litigation-driven profits will be millions per year, etc.), Mr. Wakefield tells us it is all about the children, and he made all his financial ties public in advance (which he didn’t). When it was discussed on TV that he had a patent application in place covering an alternative measles patent–one whose commercial viability hinged directly on the confidence level of the current vaccine–he told us that it was all misdirection on the part of Mr. Deer. Later it became public that Mr. Wakefield had business plans in place to develop the invention as a potential vaccine.

Essentially, after being caught with his hand in the cookie jar, Mr. Wakefield tells us he was never in the kitchen and, besides, he was only getting the cookie for the children.

From a public relations standpoint (and let’s not forget that Mr. Wakefield had a PR representative since before Brian Deer entered the scene) Mr. Wakefield has played his hand somewhat well. He plays the role of a man who remains polite even in the face of this alleged adversity we are to believe has been put upon him. Mr. Deer, on the other hand, is (I believe in his own words), mercurial and has made statements which are easy to use against him.

Mr. Wakefield is portrayed as the guy you’d love to sit down to a glass of beer (or more likely wine) with while Mr. Deer is someone you’d best not provoke (I believe the term “reptilian” has recently been used by his detractors). I’m not so motivated by the opportunity to sit down to a glass of wine with unethical people, but let’s move on.

In an article on the Age of Autism blog, Ed Arranga writes about Mr. Deer being brought out to the U.S. to give talks to some academics and how Mr. Wakefield will hold a press conference. As one would expect from the Age of Autism, the approach is strongly negative. Here’s how it starts out:

Brian Deer – a liar, fraud, and former reporter for The Sunday Times of London – is coming to the University of Wisconsin-La Crosse October 4 and 5 to lecture you about Dr. Andrew…

Mr. Arranga is doing the attack here, allowing Mr. Wakefield to retain his polite persona. But with a multi-million dollar lawsuit ongoing, is this really enough distance for Mr. Wakefield? How will the above statements play out should Mr. Wakefield win the chance to sue?

Mr. Arranga runs AutismOne, whose convention presents Mr. Wakefield as a prime draw. In other words, Mr. Arranga has a financial interest in Mr. Wakefield’s reputation. A small conflict of interest which, while obvious to most of his readers, should have been made clear in Mr. Arranga’s article. Mr. Arranga also serves on the “Strategic Autism Initiative”, a charity formed after Mr. Wakefield’s ouster from Thoughtful House. [Correction: Mrs. Arranga serves on the SAI board, but Mr. Arranga is not listed in the available tax document]. Most importantly to this discussion, Mr. Arranga is also on the “executive staff” of the “Dr. Wakefield Justice Fund“.

So someone intimately involved with Mr. Wakefield’s career and defense is calling Mr. Deer a “fraud” and a “liar” and, in general, attacking Mr. Deer. Consider that Mr. Wakefield’s case is based at least in part on the idea that using terms such as “fraud” is defamatory. Mr. Wakefield’s original court filing states that defamation occurred: “Based on Defendants’ purported “reanalysis,” Defendants made and continue to make assertions that Plaintiff Dr. Wakefield committed fraud and is “a fraudster.”” Again, one should ask, did Mr. Wakefield blunder in allowing this personal attack on Mr. Deer? How will a judge or jury view a man who sets his team to attack others while claiming that the very same terms are defamatory? It’s not enough to cost him the case, but it was not a wise move.

The sad thing is that this is as close to relevance and Mr. Wakefield can currently attain in the autism communities. Holding a press conference in response to lectures by Brian Deer, who is discussing events that happened 15 years ago. Attacking Mr. Deer through surrogates. Putting time, money and effort into the latest in a string of procedural maneuvers which, even if he were right, hold no benefit for the communities.

As far as cost/benefit calculations go, Mr. Wakefield is a simple case. Costs to the autism communities in time and resources wasted chasing the ideas he championed. Costs to the public at large in terms of health scares and increased infectious disease. All this weighed against a complete lack of benefit brought to the communities by Mr. Wakefield. I guess we should put this in terms of a benefit/cost ratio to avoid dividing by zero.

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By Matt Carey

Autism center sues over blog posts calling it a fraud and worse

7 Sep

The idea that an autism center would sue over blog posts is the sort of story that would, of course, attract my attention. But when I saw the blurb for Autism center sues over blog posts calling it a fraud and worse I was taken back to the before time of autism blogging.

Here’s what I read:

Autism Intervention Specialists of Worcester and principal Nassim Aoude today filed a federal libel suit against a New Hampshire man who says it pedals “horseshit” because it refuses to accept his theory that autism is caused by mercury in…

For those who have been online for a few years, guessing the identity of the “New Hampshire man who says it pedals “horseshit” “, especially readers of this blog, making the ID would probably be easy. Here’s a bit from the story:

Autism Intervention Specialists of Worcester and principal Nassim Aoude today filed a federal libel suit against a New Hampshire man who says it pedals “horseshit” because it refuses to accept his theory that autism is caused by mercury in vaccines.

In its suit, filed in US District Court in Boston, Autism Intervention Specialists wants John Best’s blog posts about it replaced with retractions and a suitably large, if unspecified, amount of damages.

John Best was one of the early generation of Generation Rescue’s “Rescue Angels” but even GR wanted distance from him. Mr. Best attacked a number of people online in years past. Autism Intervention Specialists is neither the first nor the last to be attacked.

I am a bit conflicted about this lawsuit. Freedom of speech is very important to me (even outside of writing). Autism Intervention Specialists may be in for a mini Streisand Effect. Aside from the fact that recovering damages from Mr. Best is unlikely at best, AIS should read Mr. Best’s writing and his YouTube videos and ask whether any reasonable person would give Mr. Best any credibility whatsoever.

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