Archive | Autism RSS feed for this section

Andrew Wakefield takes to the courts again

5 Jan

Andrew Wakefield, one of the doctors who was stricken from the register by the U.K.’s General Medical Council, has filed a complaint in Texas claiming that Brian Deer (Journalist) and Fiona Godlee (Editor of the British Medical Journal). The complaint alleges that the articles, editorials and statements made later about those include “false and defamatory allegations” about Mr. Wakefield.

From the complaint filed:

This defamation lawsuit arises, in part, out of the publication on or about January 5, 2011 and thereafter, in the British Medical Journal, of an article authored for the BMJ by Brian Deer, titled Secrets of the MMR Scare (Exhibit A) and accompanying editorials by the BMJ’s editor, Fiona Godlee (Exhibit B 1-2). Defendants’ article and editorials, distributed to subscribers in Texas and which fonn the basis of Plaintiffs claims, contained unfair, incorrect, inaccurate and unjust criticisms of findings previously reported by Dr. Wakefield and 12 other co-authors. More significantly, Defendants accused Dr. Wakefield of fraud and of fraudulently and intentionally manipulating and falsifying data and diagnoses in connection with a clinical paper he co-authored called Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children, originally published in the medical journal The Lancet in 1998 (the “Lance,t Paper”). Defendants’ false and defamatory allegations have been widely disseminated by Defendants through the BMJ and other sources since their original publication.

Mr. Wakefield sued Mr. Deer in the past, but dropped that suit.

Mr. Wakefield’s legal team consists of William M. Parrish, J.D. Ellwanger, John D. Saba Jr of DiNovo Price Ellwanger & Hardy LLP, a firm which primarily focused on intellectual property and commercial litigation.

Mr. Wakefield does not specify an amount for damages:

Dr. Wakefield hereby prays for a trial by jury as to all disputed issues of fact, and upon findings appropriate, further prays for judgment from this Court against the Defendants for: nominal damages, actual and compensatory damages, special damages, including injury to reputation and character, injury to feelings, humiliation, loss of earning capacity, exemplary damages pursuant to TEX. CIv. PRAC. & REM. CODE §41.001, et. seq., declaratory relief, costs and expenses, prejudgment and post-judgment interest as allowed by law, and for such other and further relief to which he may be justly entitled.

Should this go to court, Mr. Wakefield, In arguing a “injury to reputation and character, injury to feelings, humiliation, loss of earning capacity, will have to quantify the state of his reputation and character, feelings, humiliation and loss of earning capacity at the time. This will have to take into account the fact that he had already been struck off the medical register in the UK after being found to have committed “serious professional misconduct” and had lost his job at Thoughtful House. Were the donors to the “Strategic Autism Initiative” less likely to contribute after the BMJ articles?

Honestly, I thought the Andrew Wakefield saga was over and I was glad of it.

Los Angeles Times: Discovering Autism

23 Dec

The Los Angeles Times produced a series of articles called “Discovering Autism”. The series is in four parts and represents was researched for years. The articles are:

Autism boom: an epidemic of disease or of discovery?
Autism rates have increased twentyfold in a generation, stirring parents’ deepest fears and prompting a search for answers. But what if the upsurge is not what it appears to be?

Warrior parents fare best in securing autism services
Public spending on children with autism in California varies greatly by race and class. A major reason: Not all families have the means to battle for coveted assistance.

Families cling to hope of autism ‘recovery’
An autism treatment called applied behavior analysis, or ABA, has wide support and has grown into a profitable business. It has its limits, though, and there are gaps in the science.

Autism hidden in plain sight
As more children are diagnosed with autism, researchers are trying to find unrecognized cases of the disorder in adults. The search for the missing millions is just beginning.

The first article brought a great deal of criticism, from many quarters. As you can imagine challenging the way the “autism epidemic” is viewed is not welcomed by those promoting vaccines as a primary cause of autism. This article also brought out at least one commenter who asserted that the rise in autism diagnoses is driven by people seeking social security payments (SSI), which goes to show that readers tend to bring their own preconceptions to what they read.

Interest in the online discussion of the series dropped off dramatically after day one.

Autism boom: an epidemic of disease or of discovery? looked at the rise in autism diagnoses observed in many places. Writer Alan Zarembo points out quite rightly that autism rates vary dramatically by school district in California, as well as state to state.

Such variability of autism rates across geography speak strongly against the idea of a single cause, such as vaccines. Autism Diva wrote about the strong variation by regional center district within California years ago (her piece is not up, but this article from LBRB discusses her article)

The variation by school district and by race/ethnicity was a major factor in helping me see that the vaccine-epidemic of autism did not make sense, back when I first started to read up on autism.

The LA Times quotes Prof. Peter Bearman of Columbia University, who studied the California Department of Developmental Services data closely and showed, amongst other things, that a large autism “cluster” existed in Southern California. The Times notes that similar clusters were found by U.C. Davis Professor Irva Hertz-Picciotto. (I was present when Autism Diva discussed the regional center graph with Prof. Hertz-Picciotto, by the way).

Prof. Bearman also showed that social forces were at work–awareness, if you will–which has aided the increase in autism diagnoses.

In other words, autism is not contagious, but the diagnosis is.

“`Is it real or not?’ is a meaningless question,” Bearman said of the surge in cases. “The sociological processes are as real as the biological processes.”

A diagnostician (neurologist) is quoted in the Times:

Dr. Nancy Niparko, a child neurologist in Beverly Hills, said that whether she identifies a child as autistic can come down to whether she believes it will do any good.

“If it’s going to improve the possibility of getting services that will be helpful, I will give the label,” she said.

“I don’t work for labels. Labels work for me.”

In Warrior parents fare best in securing autism services makes the point that it takes work, hard work, to get the services that a child may need. An autism diagnosis is not a ticket to services, it is a first step. Parents who fight harder and longer tend to get higher levels of services for their children.

The Times points out that within a single district (albeit one of the largest in the U.S., Los Angeles Unified), the fraction of students with 1:1 aides varies by geography and race/ethnicity:

District officials acknowledge that advocacy efforts make a big difference in who gets services, but see things differently than parents on the value of 1:1 aides:

L.A. Unified officials offered a similar explanation for the disparity. As parents successfully lobbied for outside aides, the idea spread, and in certain schools it became standard practice to offer them.

“Parents learned from each other,” said Nancy Franklin, a top special education administrator. “It became a cottage industry in LAUSD.”

The district is trying to break the pattern by persuading parents that its own staff can meet children’s needs in many cases.

“We’re paying lots of money for services that are of questionable value,” said Eileen Skone-Rees, who oversees the district’s contracts with companies that supply one-on-one aides.

In Families cling to hope of autism ‘recovery’, the Times focuses on ABA. Biomedical approaches are not really discussed.

The article talks about ABA from the early work of Ivar Lovaas to the present day, where it is common in some school districts and regional centers. The high costs and the level of research support are discussed along with examples of children who are success stories and those who are not.

In Autism hidden in plain sight, the Times looks at how autism is often missed in adults.

The Times presents an intriguing look at the past in medical records from a child diagnosed by Leo Kanner (whose work coined the term “autism”).

The times provided a number of slide show vignettes of people they interviewed.

I can’t link to them directly, but I’ve watched a few and enjoyed them. Jeane Duquet, autistic adult diagnosed at age 39 (right side, middle). Jesse Castillo, age 11 (bottom right corner)

The author of the series, as well as Catherine Lord were interviewed by NPR:

http://www.npr.org/v2/?i=144022386&m=144022377&t=audiowidth=”400″ height=”446″ />

I would certainly have done some things differently had I written the series. I would have chosen different wording, for example. Yes, the pieces brought out some less than pleasant perspectives. I’ve read a few complaints about the series, from not supporting vaccine causation or biomedical approaches to presenting autism as a costly burden. Ironically, these complaints come from the same people who repeatedly say that “autism costs society $3.5 million per individual”. A big piece of that $3.5M is ABA and if we as a community (or part of the community) are to defend the need for ABA, we have to accept that there is a cost. I believe, and I commented, that the choice of language at times put a negative slant where one was not needed. However, the series put some very good information out, including: 1) the “epidemic” has a large portion which is driven by social factors, with a much smaller part that may be a real change in the number of autistics, 2) services are not handed out on a silver platter. Parents and autistics have to fight for what supports the law says they should get, 3) 1:1 therapies such as ABA may be effective, but they are expensive and the research behind them is still incomplete and 4) adult autistics are out there in greater numbers than is currently reported.

The biggest complaint about the series is that it portrays parents as seeking diagnoses for their kids for some sort of financial gain. Dr. Jay Gordon (a major promoter of the vaccine-epidemic idea) has noted this where Mr. Zarembo has been interviewed (http://www.scpr.org/programs/patt-morrison/2011/12/22/21866/autism-diagnoses-spike-an-epidemic-in-the-making). Mr. Zarembo makes it clear in the interview that this is not his point. That the autism diagnosis “opens the door” and that parents are doing what they should for their children–including fighting hard to obtain appropriate services once the door is opened.

For those complaining that the LA Times series didn’t cover the vaccine-epidemic idea or biomedical approaches to autism: I’d recommend you be thankful. Quite frankly an evidence driven newspaper series on these issues will not go the way you want.

Happy Holidays from the Autistic Self Advocacy Network

22 Dec

Below is an email I received from the Autistic Self Advocacy Network. Their end-of-year letter:

As we approach the end of the year, many of you will be getting ready to spend the holiday season with your families. As you do, we hope you’ll take a moment to remember all that we’ve accomplished together this year.

From our Navigating College handbook to our Symposium with Harvard Law School on Ethical, Legal and Social Issues in Autism Research, this has been an exciting year for the Autistic Self Advocacy Network. We celebrated our fifth anniversary, engaged in advocacy on critical issues like stopping the Judge Rotenberg Center’s abuse of children, fighting for more public support on critical topics like transition supports, true community integration, stopping restraint and seclusion and more.

In addition, our programming has helped build a stronger voice for the Autistic community in many sectors of American life. In our Keeping the Promise report, we partnered with other national self-advocacy groups to help define community living resulting in a document now being used by advocates and policymakers nationwide. Through our participation in the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), we are breaking new ground by ensuring the participation of Autistic voices in the research process. What’s more, 2012 promises to bring even more progress.

In 2012, our new internship program with Freddie Mac will result in new job opportunities for Autistic adults. Our forthcoming Autism Campus Inclusion initiative will help train the next generation of Autistic leaders and build a network of Autistic-run organizations on college campuses across the country. Not to mention our continued advocacy and activism to ensure that wherever autism is being discussed, we have a voice at the table – together.

Will you help support our work to keep the self-advocate voice front and center in 2012? Please consider an end of year donation to the Autistic Self Advocacy Network. With your help, the momentum we have begun this year can continue and build real and lasting change for our shared community. All donations are tax-deductible.

Sincerely,
Ari Ne’eman
President
The Autistic Self Advocacy Network

PS. If you are unable or uncomfortable making donations online, donations can be sent to

The Autistic Self Advocacy Network
PO Box 66122 NW
Washington, DC 20035

XMRV paper withdrawn

22 Dec

The paper that started the idea that XMRV (Xenotropic murine leukemia virus) might be linked to chronic fatigue syndrome (also called myalgic encephalomyelitis) has been fully withdrawn by the journal, Science. In a rare move, the journal has withdrawn the article in an “editorial” retraction. I.e. the editor, not the authors, have retracted the article.

ScienceInsider (a blog at Science) writes in In a Rare Move, Science Without Authors’ Consent Retracts Paper That Tied Mouse Virus to Chronic Fatigue Syndrome:

After enduring more than 2 years of criticism that included evidence of contamination and misrepresentation of data, a Science paper that linked a mouse retrovirus to chronic fatigue syndrome (CFS) today received its last rites: Editor-in-Chief Bruce Alberts issued a full retraction. The study’s 13 authors in September signed a partial retraction after one of the three collaborating labs found that a contamination had marred its contribution, but they could not agree on the wording of the full retraction, so Alberts issued it without their approval. “Science has lost confidence in the Report and the validity of its conclusions,” wrote Alberts in a rare “editorial” retraction, which appears in the 23 December issue of Science. “It is Science’s opinion that a retraction signed by all the authors is unlikely to be forthcoming.”

The original article, Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome, is fully retracted. This follows a partial retraction by the authors:

In our 23 October 2009 Report, “Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome,” two of the coauthors, Silverman and Das Gupta, analyzed DNA samples from chronic fatigue syndrome (CFS) patients and healthy controls. A reexamination by Silverman and Das Gupta of the samples they used shows that some of the CFS peripheral blood mononuclear cell (PBMC) DNA preparations are contaminated with XMRV plasmid DNA.

There was also an “editorial expression of concern”

The story of the Science paper on XMRV and CFS has had even more twists. Nature News discusses this in XMRV paper withdrawn and the above mentioned Science Without Authors’ Consent Retracts Paper That Tied Mouse Virus to Chronic Fatigue Syndrome.

I first heard of the retraction through Twitter and Trine Tsouderos of the Chicago Tribune. The Trib has an article by Ivan Oransky, Embattled chronic fatigue syndrome paper retracted is online at the Chicago Tribune.

The lead author in the Science article on XMRV and CFS also made public statements about XMRV being present in the blood of autistic children. This was picked up by David Kirby, whose work publicity work was key in promoting the now debunked link between mercury and autism. Not surprisingly, Mr. Kirby took the angle (attributed to the lead researcher on the CFS article, Judy Mikovits) that this might give evidence to the vaccine-epidemic notion of autism.

While Ms. Mikovits has not published any work on XMRV and autism, two other groups have.

Lack of infection with XMRV or other MLV-related viruses in blood, post-mortem brains and paternal gametes of autistic individuals.

PCR and serology find no association between xenotropic murine leukemia virus-related virus (XMRV) and autism.

Both articles are available free, but from the titles alone you can tell that the evidence goes against any link.

As reported here recently, there is a multicenter XMRV/CFS study ongoing, led by Ian Lipkin and Ms. Mikovits is continuing to work on this study at the National Cancer Institute.

Chronic fatigue syndrome scientist finds a temporary home

21 Dec

Judy Mikovits will complete her part of a study on XMRV and chronic fatigue syndrome (CFS) study at the National Cancer Institute (NCI)

Nature News Blog reports in Chronic fatigue syndrome scientist finds a temporary home

Judy Mikovits is taking her work on the road. The embattled chronic fatigue syndrome (CFS) researcher will conduct her arm of a study sponsored by the US National Institute for Allergy and Infectious Disease (NIAID) on the condition’s link to certain retroviruses at another US government laboratory, the scientist overseeing the study told Nature today.

It will be good that she is involved in the ongoing, multi center study. As the face of XMRV/CFS research, her participation will add to the acceptance of the results, I suspect.

As reported by David Kirby, Ms. Mikovits made public statements that XMRV might be linked to autism and even suggested the hypothetical link might be involved in a hypothetical connection to vaccines.

No work on XMRV and autism has been published to date by Ms. Mikovits. However two other papers did explore the question of a connection, but found no evidence:

PCR and serology find no association between xenotropic murine leukemia virus-related virus (XMRV) and autism

and

Lack of Infection with XMRV or Other MLV-Related Viruses in Blood, Post-Mortem Brains and Paternal Gametes of Autistic Individuals.

Rats Show Empathy, Too

20 Dec

Empathy. There are a number of studies out claiming that some autistics lack empathy in one form or another. In a recent NIH research matters article discussing an empathy study, a researcher is quoted:

“All of this tells us that acting on empathic feelings to help another in need is a biological and in fact a neurobiological mandate,” Mason says. “It’s in our brain.”

Empathy is basic. It’s fundamental. It’s in our brain.

Just to throw a twist into the argument for those who didn’t click on the link above, the research involved empathy in rats. Yes, in rats we seek to demonstrate that they have empathy. In autistics, there is work ongoing to demonstrate a lack of empathy.

Here’s a picture of the experiment:

A rat is placed in a tube. A second rat is able to open the tube from the outside to release the entrapped rat. Based on various conditions where the free rats do or don’t release the entrapped rats, the researchers determine that the free rats are demonstrating empathy.

I’m going out on a speculative limb here: my guess is that if I were encased in a plexiglass tube, I could count on people, autistic or not, opening the door to let me out.

Autism Memoir Headed For The Big Screen

20 Dec

From Disability Scoop: Autism Memoir Headed For The Big Screen.

A forthcoming memoir from the mother of an autistic savant is poised to become a feature film as well.

The book tells the story of Indiana mom Kristine Barnett and her 12-year-old son, Jacob, who was nonverbal as a toddler but now has a chart-topping IQ of 170 and studies graduate-level physics.

Variety announced in Warners buys rights to autism memoir that the book that Scattered Skills is optioned to be made into a film.

Thinking Person’s Guide to Autism: The Autism Book You’ve Been Waiting For

20 Dec

I’ve already written about the Thinking Person’s Guide to Autism book. In reading the other discussions of it I found the press release, which I copy below:

Thinking Person’s Guide to Autism: The Autism Book You’ve Been Waiting For.

Redwood City, CA December 19, 2011 — “Refreshingly free of dogma, disinformation, and heavy-handed agendas, Thinking Person’s Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them.” — Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science

Thinking Person’s Guide to Autism is the book we wish we’d had when autism first became part of our lives: a one-stop resource for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.

About the Editors

The Thinking Person’s Guide to Autism editors are Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg. Each woman writes, educates, and advocates within the autism communities. This project has its foundation in their collective parenting, science, education, and self-advocacy experience.

For more information or review copies of THINKING PERSON’S GUIDE TO AUTISM, please visit www.thinkingautismguide.com/p/press.html or contact our media relations department at 650.260.8742 or thinkingautism@gmail.com.

Publication information:
Available: on Amazon http://is.gd/TPGAonAMAZON and at Createspace.com http://is.gd/BUYTPGA
Paperback: 370 pages

Publisher: Deadwood City Publishing (2011)
Language: English
ISBN-10: 0692010556
ISBN-13: 978-0692010556

and, some advance praise:

“BOOK OF THE YEAR”
“Refreshingly free of dogma, disinformation, and heavy-handed agendas, Thinking Person’s Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them.” — Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science

“…what’s so valuable about the voices collected on TPGA. I think it’s the power of personal experience combined with hard-headedness about information. It’s the combination of warmth and realism: you feel the love the writers have for their kids (and other people’s kids) even while (or exactly while) they are telling the truth about how difficult it is be to be a parent to those kids, and how imperfect we all are at it.” — Caroline Miller, Child Mind Institute

“One of the best sites on the web for information about autism from parents, professionals, and autistic people themselves… this book is a must-have.” —Jean Winegardner, Washington Times

Judge awards Robertson Co. bullied teen $300K

20 Dec

Bullying of autistics is a topic that comes up a great deal. Just last week a gang of nine youths who viciously beat an autistic teen was let go without any punishment. In another case, an autistic student was awarded $300k, the maximum allowed by law, for a bullying case.

Before anyone sees this as a victory, the kid was left legally blind in one eye, the family incurred $90k in medical expenses and it took years to win the judgement. From a story on WKRN-TV in Nashville, Tennessee (U.S.):

As a seventh grader at White House Heritage School in 2006, Jacob Gentry was hit in his left eye with a textbook when his teacher left the classroom, causing him to become legally blind in that eye.

It seemed like a minor injury at the time, but it required four surgeries.

Jacob’s attorney, Jonathan Street, told Nashville’s News 2, “There’s a lot of pain that you go through, his medical bills were over $90,000.”

The Thinking Person’s Guide to Autism: The Book

19 Dec

I was fortunate to attend IMFAR (the International Meeting For Autism Research) this year. One big part of what made that experience valuable to me was the opportunity to spend time with Shannon Des Roches Rosa. Shannon’s writing can be found many places including online at Squdalicious and Blogher, and in print in the book My Baby Rides the Short Bus (a great interview about the book can be found on the KQED website).

At one point at IMFAR I posed a problem I saw in much of the online discussion I often am involved in: that while we can and do effectively counter much of the misinformation that permeates the autism-parent discussion, we don’t have much to offer people. She paused for a second, just long enough for me to realize that “we” didn’t mean her, and told me that this was the reason for The Thinking Person’s Guide to Autism and that the book was in the works.

The Thinking Person’s Guide to Autism has been a very successful website with excellent discussion for some time now, and now the book is available. You can buy it on Amazon. From CreateSpace you can read the short blurb:

Thinking Person’s Guide to Autism (TPGA) is the resource we wish we’d had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autistics, autism parents, and autism professionals

Having read the first two chapters I agree with the statement above. It is a resource I wish I had when my kid was diagnosed. Sure, I’d have loved to have read this book before and been better prepared.

The book doesn’t pull punches. From the experiences of the adult autistics who wrote many essays to those of the parents,

From the introduction:

The Goal of The Thinking Person’s Guide to Autism is to help you fast-forward past society’s rampant autism fabrications and negativity by providing clear, thoughtfully presented, balanced, and referenced information

the essays form a guide. They are not telling people what to do, but providing good information to help one make decisions.

In the past Left Brain/Right Brain has reviewed some books in detail, chapter by chapter. I plan to do this with TTPGTA (The Thinking Person’s Guide to Autism).

Tags:

← Older Entries
Newer Entries →