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Robert F. Kennedy Jr. not holding a press conference on Monday

9 Apr

My guess is that you are reading this thinking: this is news? Doesn’t pretty much every day go by without Robert F. Kennedy holding a press conference? Well, yes. But there was a press conference planned for Monday. Yes, the man who brought you “Deadly Immunity” (an article promoting the mercury/autism link that was so flawed that it was retracted by Salon.com and quietly removed from the Rolling Stone website) has something so new and important that he wants to tell the world about it from in front of the White House.

The subject? A study purportedly showing that many autistic kids have been compensated over the years by the National Vaccine Injury Compensation Program (a fact that has been public knowledge for 9 years or more). The article, under review by his University’s law journal, appears to be the one which was touted as ongoing a few years ago (I recall this being on a piece by David Kirby on the Huffington Post before he focused on his new project of food safety).

That press conference, from what I’ve heard, has been put off until after the paper is actually accepted and published.

Here’s the background history:

1) The US adopts a National Vaccine Injury Compensation Program in the mid-late 1980’s.

2) Autistic kids are amongst those compensated.

3) The concept of a vaccine-induced autism epidemic gains momentum in the late 1990’s.

4) Enough cases are submitted to the Program that an Omnibus proceeding is started to cover all the cases.

5) The first item added to the docket, Autism General Order #1, tells attorneys to be aware that autistics with table injuries should be handled outside the Omnibus for faster processing. (year 2002)

One important caveat, however, is drawn to the attention of all petitioners and their counsel! There may be cases involving autistic-like disorders which manifested following an injury defined in the Vaccine Injury Table. That is, a vaccine may have suffered an episode involving a severe acute encephalopathy within 72 hours after a pertussis vaccination (DTP or DTaP), or 5 to 15 days after an MMR vaccination. If so, such an acute encephalopathy and any residual effects thereof would be presumed to be vaccine-caused pursuant to the Vaccine Injury Table.

and

Autism cases involving Table Injuries have been compensated under the Program. If in a particular case there exist medical records demonstrating that such a qualifying “acute encephalopathy” occurred within the appropriate time frame, petitioner or counsel should bring that to the assigned special master’s attention so that, if appropriate, the case can be processed without delay as a Table Injury.

6) The government concedes Hannah Poling’s case as a table injury (late 2007) and the Hannah Poling concession was leaked while still in process. (Feb. 2008).

7) Given the news focus generated, then Chief Special Master Gary Golkiewicz was quoted:

“Years ago, actually, I had a case, before we understood or knew the implications of autism, that the vaccine injured the child’s brain caused an encephalopathy,” he said. And the symptoms that come with that “fall within the broad rubric of autism.”

And there are other somewhat similar cases, Golkiewicz says, that were decided before autism and its symptoms were more clearly defined.

8) Kathleen Siedel found a number of cases which were in the public record involving vaccine injury cases compensated. This list then appeared in many places, including a journal paper.

9) it was signaled that a new study was in the works where the prevalence of autism was notably higher amongst people compensated in the vaccine-injury program.

10) The autism prevalence estimate in the US was increased to 1 in 100, up from 1 in 150. Whether this had an impact on the apparent delay of (9) I can’t say.

Short form: we’ve been waiting for years for the study which will show us that the fraction of kids compensated by the Court is higher than expected. Now it appears that the study is in process and in a law journal. And that Robert F. Kennedy wanted to tell us all about it on Monday. But that won’t happen now, apparently. Apparently even law journals have embargoes.

Even though the press conference seems to be canceled for now, I guess that sometime in the near future Robert F. Kennedy will confirm what is and has been public knowledge. This will be followed by a blog storm acting as though this is news. Perhaps I’ll be surprised and something new will be in the announcement.

So far, the fraction of children with ASD diagnoses who have been compensated by the Autism Omnibus Proceeding is 1 in 838. This isn’t a fair estimate of what the final fraction will be, as many of those cases dismissed are for procedural issues like failure to prosecute and timeliness of filing. For that one compensated case, there is the note:

*May include case(s) that were originally filed and processed as an OAP cases but in which the final adjudication does not include a finding of vaccine-related autism.

**HHS has never concluded in any case that autism was caused by vaccination.

IACC meeting on Monday…or not

8 Apr

The IACC has a meeting scheduled for Monday. But, if the US Government shuts down due to budget negotiations, it won’t happen. A great example of good work being sacrificed for politics. I don’t

Reminder: Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

PLEASE NOTE THAT IN THE CASE OF A GOVERNMENT CLOSURE, THIS MEETING WILL NOT TAKE PLACE AND WILL NEED TO BE RESCHEDULED

Please join us for an IACC Full Committee meeting that will take place on Monday, April 11, 2011 from 9:00 a.m. to 5:00 p.m. ET in Washington, DC. Onsite registration will begin at 8:00a.m.

Agenda: The meeting will feature special presentations and activities to celebrate HHS Autism Awareness Month. The IACC will also discuss committee business items including the 2010 Summary of Advances and the 2009 Portfolio Analysis. The agenda is posted at: http://iacc.hhs.gov/events/2011/full-committee-mtg-agenda-April11.shtml.

Meeting location:
The Ronald Reagan Building and International Trade Center
1300 Pennsylvania Avenue, NW
The Polaris Room
Washington, DC 20004

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-577-8995

Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the webcast or conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

Reconsidering the Nature of Autism

8 Apr

Todd Drezner has a new piece up on the Huffington Post: Reconsidering the Nature of Autism. He starts out by quoting the forward to one of Jenny McCarthy’s books. The forward is by alternative medical practitioner Jerry Kartzinel.

Here is what Mr. Drezner wrote in his introduction:

“Autism … steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one.” So wrote Dr. Jerry Kartzinel in the introduction to Jenny McCarthy’s bestselling “Louder Than Words.” No wonder, then, that the concept of neurodiversity– the idea that we should understand and accept autistic people as a group that thinks differently from the majority — has proven to be so controversial.

The quote takes me back. Back to when I was starting to look online for information about autism. I remember when Jenny McCarthy hit the scene. Kev responded here with his blogging. The blog might have been kevleitch.co.uk then, not LeftBrainRightBrain. I remember that Kev’s blog went down: the traffic was so high that he hit his bandwidth quota. I remember that he responded to the forward from Jerry Kartzinel. He responded with words and, a little later, with video:

I don’t bring this up just for some sort of nostalgia. But this reminds me of two major themes. First: words hurt. What Dr. Kartzinel wrote, and Jenny McCarthy published, hurt. It hurt a lot of people. It added to the stigma of autism and disability. Second: words can be powerful. Kev fought back, as did many others. How or if this was an influence on Todd Drezner, I can’t say. It influenced me as I still remember it.

We can’t sit back and let people stigmatize others, for whatever reason they may have. Kim Wombles shows that almost every day with her blog Countering. Bev did it with a humor and keen perspective on Asperger Square 8. Corina Becker is taking up the task with No Stereotypes Here. And this is just a few of the many voices, autistic and non, out there.

Having said this, I will bring up one message that I’ve felt needed to be countered for some time. Here is a screenshot of a page from the book “the Age of Autism” by Dan Olmsted and Mark Blaxill. Both write for the Age of Autism Blog (Dan Olmsted appears to be the proprietor). Mark Blaxill is a member of the organization SafeMinds. Both promote the idea of autism as vaccine injury and, more specifically, the failed mercury hypothesis. (click to enlarge)

To pull but one disturbing quote: “As one of the first parents to observe an autistic child, Muncie learned how well autism targets ‘those functions distinctly human’ “. Yes, I have spent quite a lot of time fighting bad science like the first part in that sentence: the idea that autism is new/the kids in Kanner’s study were the first autistics ever. But what about the second part: that autistics are missing or have impaired “distinctly human” functions? Yes, I’ve also responded to that sentiment in the past and I plan to continue to do so. And that is much more important than the fight against bad science.

Words hurt. Jerry Kartzinel’s words hurt. Dan Olmsted and Mark Blaxill’s words hurt. They hurt and they are wrong. Plain and simple.

Another phrase from the above paragraph: “autism brutally restricts the interests of the affected”. So say the team that has one interest: pushing mercury in vaccines as a cause of autism. A little ironic?

Reading their writing, I am reminded of one of Bev’s amazing videos:

Back to the paragraph from “The Age of Autism”. Dan, Mark: You don’t think autistics made tools, explored the globe, invented new technologies? The sad thing is, it seems like you don’t.

Yeah, a lot of kids, kids like mine, aren’t in the world explorer/inventor categories. And even kids like mine are still as human as you or I. They are not missing anything “distinctly human”.

Researchers track down autism rates across the globe

8 Apr

The Simons Foundation blog, SFARI, has always had a good quality of articles. Lately it appears to me that the frequency of articles has increased. One recent article hits a subject that has been a focus of mine for some time: prevalence estimates and how they vary by culture and geography. In Researchers track down autism rates across the globe Virginia Hughes talks to a number of researchers working on expanding autism prevalence studies to more countries. Outside of the US and the UK, autism prevalence studies are somewhat rare. Until fairly recently, prevalence estimates outside of the US and Europe were basically nonexistent.

Ms. Hughes starts with this introduction:

In urban areas of South Korea, some families of children with developmental delays will go to great lengths to avoid a diagnosis of chapae, or autism. They think of it as a genetic mark of shame on the entire family, and a major obstacle to all of their children’s chances of finding suitable spouses.

The stigma is so intense that many Korean clinicians intentionally misdiagnose these children with aechak changae, or reactive detachment disorder — social withdrawal that is caused by extreme parental abuse or neglect.

This won’t come as a surprise for those who have read Roy Richard Grinker’s Unstrange Minds, where Prof. Grinker explores how autism is viewed in various parts of the world, including South Korea.

Prof. Grinker is interviewed, as is his collaborator Dr. Young Shin Kim, and Dr. Eric Fombonne.

Autism prevelance work has been performed or is ongoing in Mexico, South Korea, Brazil, India, South Africa and Oman. Since autism isn’t diagnosed through a biological test, variations in culture can have a significant impact on the test methods.

Ms. Hughes notes:

Language and culture may also affect the way this research is carried out. For instance, the Korean language uses an extensive array of suffixes that denote the relationship between the speaker and the subject. South Korean children with autism have trouble using these social markers, but the Western-based standard tests of autism, such as the Autism Diagnostic Observation Schedule (ADOS), don’t test for this.

Similarly, Grinker points out, healthy children from non-Western cultures may display a trait that ADOS counts as a symptom of autism. In South Korea, for example, making eye contact with an adult is not socially appropriate.

“This is why it’s pretty useful to have [anthropologists] who can translate diagnostic instruments that were designed in one culture and used in another,” Grinker says.

Rather than cut and paste the entire article I will point you back to SFARI for the full piece. It is well worth reading.

End of life care

7 Apr

When this abstract came up it really got me wondering. We hear quite often parents say, “what will happen when I’m gone”. Well, one of the the things that will happen, someday, is that our kids will themselves pass on. I have to say, this is a subject I’ve avoiding considering. The abstract below is for Flemish residential care facilities, but I don’t know how, say, the California Department of Developmental Services handles end of life care. I have the right to sign an advanced directive stating whether I want extraordinary measures used to keep me alive. I have the right to refuse care. I have the ability to refuse care if I feel that my quality of life is not benefited. Will my child have these rights? I don’t want to think about these things. But if I don’t, who will?

J Intellect Disabil Res. 2010 Dec;54(12):1067-77. doi: 10.1111/j.1365-2788.2010.01335.x. Epub 2010 Nov 11.
End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities.
D’Haene I, Pasman HR, Deliens L, Bilsen J, Mortier F, Vander Stichele R.
Ghent University, Heymans Institute of Pharmacology, Gent, Belgium.
Abstract
OBJECTIVE: This article aims to describe the presence, content and implementation strategies of written policies on end-of-life decisions in Flemish residential care facilities (RCFs) accommodating persons with intellectual disabilities (ID), and to describe training, education and quality assessments of end-of-life care.

METHODS: A cross-sectional mail survey was conducted among general directors of all RCFs accommodating persons with ID (n = 140) in Flanders, Belgium. Institutions were asked to provide us with a copy of their end-of-life care policy documents for content analysis.

RESULTS: Of the 140 institutions, 84 (60%) completed the questionnaire and 25 institutions provided 45 policy documents. Presence of policies on specific end-of-life decisions with a possible life-shortening effect lay between 18% (palliative sedation) and 26% (withdrawing or withholding of life-prolonging treatment). The content analysis showed that the focus in the majority of these policy documents is on palliative care, while end-of-life decisions with a possible life-shortening effect are mentioned but rarely elaborated on. Furthermore, few documents incorporate the distinctive features and needs of persons with ID regarding end-of-life care. On the other hand, half of the institutions trained and educated their professional care providers in some aspects of end-of-life care while one-third assessed the satisfaction of residents and families on several of these aspects. However, more than half reported explicitly that they have no plans for such assessments.

CONCLUSIONS: The presence of end-of-life care policies is low in Flemish RCFs and their content is not very specific for persons with ID.

IAN Network Launches Critical Survey on Autism & Wandering

6 Apr

I received the following message from the Autism Science Foundation. The message discusses the survey to collect data on wandering by autistics. To participate, you need to register at the IAN Project website.

Today, the Interactive Autism Network (IAN) with support from leading autism advocacy groups including the Autism Science Foundation, launched the first major survey to study the experience of wandering and elopement, or escaping, among individuals with autism spectrum disorders (ASD). The tendency of individuals with ASD to wander or “bolt” puts them at risk of trauma, injury or even death, yet information on this critical safety issue is lacking.

Since 2007, the IAN Project, www.ianproject.org, has connected thousands of individuals on the autism spectrum and their families with researchers nationwide to accelerate the pace of autism research through an innovative online initiative housed at the Kennedy Krieger Institute in Baltimore, Maryland. With more than 36,000 participants today, the IAN Project has the largest pool of autism data in the world.

“Although similar behavior has been studied in Alzheimer’s disease and autism advocates identify elopement as a top priority, virtually no research has been conducted on this phenomenon in ASD,” said Dr. Paul Law, Director of the IAN Project at the Kennedy Krieger Institute. “The new survey will provide vital information to families, advocates and policy makers alike as they work to keep individuals with ASD safe.”

The survey will help researchers begin to answer important questions:

* How often do individuals with ASD attempt to elope? How often do they succeed? Under what circumstances?
* Which individuals with ASD are most at risk? At what age?
* What burden do efforts to thwart elopement behavior place on caregivers?
* What can be done to protect individuals with ASD and support their families?

To understand elopement and wandering behavior in ASD, researchers need information both from families of individuals who do and do not wander and elope. In order to determine who is at risk, all families in the U.S. autism community are encouraged to participate in the survey, whether or not their loved one engages in these behaviors. Survey participants must be enrolled in the IAN Project (to register, visit www.ianresearch.org) and be the parent or guardian of a child or dependent adult with ASD.

Due to the urgent need for this information by the autism community, preliminary data will be made available on April 20, 2011, provided the necessary sample size is reached for the research survey.

This survey is funded by the Autism Research Institute, Autism Science Foundation, Autism Speaks and Global Autism Collaboration. The IAN Project is also supported by the Simons Foundation and the National Institutes of Health.

Joint Letter to CDC on Wandering

6 Apr

Below is a letter signed by a number of disability groups, including the Autistic Self Advocacy Network (ASAN) on the issue of the proposed ICD-9 code for wandering. These organizations oppose the addition of the code, for the reasons given below.

This letter was sent to the CDC’s National Center for Health Statistics on Friday, April 1st.

Dear Ms. Pickett:

We are writing as a coalition of organizations representing a wide variety of different constituents in the disabilities field. The constituencies that we collectively represent number in the hundreds of thousands from every stakeholder group in the disability field. We include organizations run by people with disabilities as well as those run by parents, other family members, professionals, providers and many others. Our coalition also includes groups representing a wide array of different kinds of disability categories, including developmental disabilities, mental health conditions, physical disabilities and sensory disabilities. We are writing to express our profound concern about the proposed ICD-9-CM code for wandering discussed at the last meeting of the ICD Coordination and Maintenance Committee on March 9th-10th.

While wandering behavior leading to injury and death represents an important and legitimate safety issue for the disability community, we are concerned that the proposal put forward by CDC’s National Center for Birth Defects and Developmental Disabilities (NCBDDD) is not rooted in high quality research and has significant potential unintended consequences for people with disabilities and family members. We encourage the National Center for Health Statistics to reject an ICD-9-CM coding for wandering behavior as ill-advised and inappropriate.

First, a code for wandering behavior could limit the self-determination rights of adults with disabilities. The wandering coding has no clear operational definition and thus no limits to its application. The proposal makes no distinction between wandering behavior that would qualify for the coding and a rational and willful effort by an individual with a disability to remove oneself from a dangerous or uncomfortable situation. For individuals with significant communication challenges, attempting to leave a situation may be one of the only ways of communicating abuse, a sensorily overwhelming situation or simple boredom. We are concerned that if this coding enters the ICD-9-CM such attempts at communication will be disregarded as medical symptoms.

Second, a code for wandering behavior could lead to serious unintended consequences in professional practice for schools and residential service-provision settings for adults with disabilities. Restraint and seclusion in schools and in residential service-provision settings is already a persistent problem. The application of this coding may result in increased restraint and seclusion as a way of preventing wandering behavior, supplanting required active support, person-centered planning and appropriate supervision. In addition, we are concerned that this coding may enable other forms of overly restrictive interventions and settings. For example, individuals with disabilities who are labeled with a wandering coding may be less likely to be included in the general education classroom, more likely to be placed in large group homes or institutions and more likely to experience chemical restraint. Each of these issues already represents a critical problem for people with intellectual and developmental disabilities that this coding may exacerbate. For example, while only 18% of adults on the autism spectrum receiving developmental disability services have a diagnosis of mental illness, 41% of such individuals are receiving psychotropic medications, suggesting a high incidence of chemical restraint.

Third, the proposed ICD-9-CM code for wandering behavior lacks research support and is not based on evidence or a controlled examination of the issues involved. No research exists to look at wandering as a medical rather than behavioral issue. The research which CDC relies on to make the case for this coding is weak. For example, one of the statistics that CDC cites (that 92% of families of children on the autism spectrum report at least one or more incidents of wandering) comes not from a high quality research study, but instead from an online poll on the website of an advocacy organization. This is not in line with the high standards for research and evidence that the CDC bases its other decision-making on.

While we respect the good intentions behind the creation of this coding, we firmly believe that there are other ways of accomplishing the positive objectives of this coding without placing people with disabilities and our families at risk of the same unintended consequences. Other methods of data collection around wandering can and are being pursued by both public and private funders. In addition, a wide variety of human services and educational approaches hold significant promise in addressing the issue of dangerous wandering behavior outside of a medical context. As a result, we strongly urge you to consider and reject the proposed ICD-9-CM coding for wandering behavior.

Regards,

Access Living
ADAPT
American Association of People with Disabilities
American Association on Intellectual and Developmental Disabilities
Autistic Self Advocacy Network (ASAN)
The Arc of the United States
Brooklyn Center for the Independence of the Disabled (BCID)
Center for Self-Determination
Coalition for Community Integration
Collaboration for the Promotion of Self-Determination
Council of Parent Attorneys and Advocates (COPAA)
Disability Rights Education and Defense Fund (DREDF)
Disabled in Action of Greater Syracuse
Disabled in Action of Metropolitan New York
Disabled Queers in Action
Disability Network of Michigan
Disabilities Network of New York City
Hearing Loss Association of America (HLAA)
Independent Living Center of the Hudson Valley
Independent Living Council of Wisconsin
Independent Living Coalition of Wisconsin
Little People of America (LPA)
Kansas ADAPT
Montana ADAPT
National Association of the Deaf (NAD)
National Association of State Directors of Developmental Disability Services (NASDDDS)
National Association of the Physically Handicapped
National Council on Independent Living (NCIL)
National Organization of Nurses with Disabilities
New York Association of Psychiatric Rehabilitation Services
Options for Independence, Inc.
Pineda Foundation for Youth
Self Advocates Becoming Empowered (SABE)
Silicon Valley Independent Living Center
Statewide Parent Advocacy Network of New Jersey (SPAN)
SKIL Resource Center of Kansas
TASH
Topeka Independent Living Center
United Spinal Association
Wisconsin Board for People with Developmental Disabilities

Autism and Wandering

6 Apr

One issue which has been getting much discussion lately is that of wandering. Elopement. Autistics (and others) who get up and leave the home, classroom, or other place and wander. Anecdotally, it is more common amongst autistics. It is one of the first behaviors I was told about after hearing a diagnosis for my kid. One the one hand it is dangerous. A person can get lost or get into traffic or another unsafe situation. On the other hand, wandering can be an attempt to escape an inappropriate or harmful setting. While I hate presenting topics as unresolved “on the one hand/on the other hand” situations, there is a time critical discussion going on: should a new diagnostic code be implemented (ICD-9 code) for wandering. So I am presenting two pieces today: one by ASAN and other groups presenting their arguments against the ICD-9 code, and one by the Autism Science Foundation and others calling for participation in an IAN survey and support for the ICD-9 code.

My view so far is this:

As a means to collect data on wandering, I doubt this will be of much use, especially in the short term. Unless the code is a means to some end (some supports to address the cause of wandering), I don’t think the code will be used by physicians. If autism itself gives us any experience, we will see a multi-year increase in wandering. A wandering “epidemic” if you will. However, and more importantly to me, without this code, will there be funding from insurance and other sources to provide those supports?

There is much discussion of how prevalent wandering is amongst autistics. I don’t know if that is really the point. If wandering “only” occurs in, say, 10% of the population, does that mean there is no need for the code and for, hopefully, improved supports? No. If wandering is a major problem, one which puts some people at great risk of harm or death, that is where the focus should lie.

As I said, I am still forming my views on this and I welcome a good discussion.

Brian Deer: Stomping at the Savoy

5 Apr

The Press Awards ceremony is ongoing at the Savoy. Brian Deer was nominated for and won the Specialist Journalist of the Year award for his work on MMR. He was cited for perseverance and for righting a wrong.

Brian Deer, of course, is the journalist who broke the stories surrounding Andrew Wakefield’s MMR research.

and video:

Making Sense of Autistic Spectrum Disorders

5 Apr

There are so many “autism” books out there for parents new to the diagnosis. Unfortunately many are just not good. We’ve spent a lot of time here discussing the problems with books that promote “mommy instinct” or therapies untested for safety or efficacy. Warning parents off a book isn’t the same thing as giving them some idea of where to turn for good information. Recently I was loaned a book by friend and fellow blogger Liz Ditz (of the I Speak of Dreams blog): Making Sense of Autistic Spectrum Disorders by James Coplan.

I read the first chapter and a couple of bits here and there and came away thinking: this could be a good resource. I plan to go through the book in pieces over time, but I am willing to start recommending it already.

There are a few things I would probably word differently, and I certainly haven’t seen it all yet. It isn’t a quick read, and a new parent may not want to go through it from start to finish linearly. But there are good sections to jump to, refer back to and the like.

Disclosure: I’ve asked for a review copy so I can return this one to Liz.

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