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Discredited doctor Andrew Wakefield in the NYT

21 Apr

NYT

The more he must defend his research, the more important he seems to consider it — so important that powerful forces have conspired and aligned against him. He said he believes that “they” — public-health officials, pharmaceutical companies — pay bloggers to plant vicious comments about him on the Web. “Because it’s always the same,” he says. “Discredited doctor Andrew Wakefield, discredited doctor Andrew Wakefield.” He also “wouldn’t be surprised” if public-health officials were inflating the number of measles mortalities…

D’OH!!!!

Lack of Correlation Between Metallic Elements Analyzed in Hair by ICP-MS and Autism

21 Apr

One of the theories behind the mecury-causes-autism hypothesis was that autistics are “poor excreters”. In other words, they can’t rid their bodies of mercury in the same way as other people. The idea has never had much scientific backing. One idea has been to measure hair for metals. I have read arguments that if there is more mercury in the hair than for an average person, that means that the individual is a poor excreter. I have also read that if their is less mercury in the hair, that means that the individual is a poor excreter. I have read that if the individual has the same amount of mercury, but that other metals meet some “counting rules” that means the individual is a poor excreter. In other words, no matter what data you get, someone will tell you that your kid has a problem excreting mercury.

The question has been studied. Hair has been analyzed. Fingernails have been analyzed. Toenails have been analyzed. In the recent study, hair has been analyzed, and the researchers did a meta-analysis of past studies. Result: there is no correlation between metal content in the hair and autism.

Lack of Correlation Between Metallic Elements Analyzed in Hair by ICP-MS and Autism.
De Palma G, Catalani S, Franco A, Brighenti M, Apostoli P.

Department of Experimental and Applied Medicine, Section of Occupational Health and Industrial Hygiene, University of Brescia, Piazzale Spedali Civili 1, 25123, Brescia, Italy, depalma@med.unibs.it.
Abstract

A cross-sectional case-control study was carried out to evaluate the concentrations of metallic elements in the hair of 44 children with diagnosis of autism and 61 age-balanced controls. Unadjusted comparisons showed higher concentrations of molybdenum, lithium and selenium in autistic children. Logistic regression analysis confirmed the role of risk factor for male gender and showed a slight association with molybdenum concentrations. Unconventional chelation and vitamin-mineral supplementation were ineffective on elemental hair concentrations. A meta-analysis including the present and previous similar studies excluded any association of autism with hair concentrations of mercury, cadmium, selenium, lithium and copper. A slight association was found for lead only, but it was very weak, as strictly dependent on the worst data from one study.

Autism is not mercury poisoning. It just isn’t. And here we have more money and more researcher time spent on a project that tells us what we already know. I’m glad to have researchers look at autism and I thank this team. But we’ve spent enough on that question, it is really time to move on.

Controlled Evaluation of the Effects of Hyperbaric Oxygen Therapy on the Behavior of 16 Children with Autism Spectrum Disorders

21 Apr

Hyperbaric oxygen treatment (HBOT) has become a big topic in the world of CAM (complementary and alternative medicine) and autism. An upcoming parent convention with a focus on CAM is even sponsored by an HBOT company. A few papers have come out, without much clear evidence of benefit.

A recent paper looks again at HBOT. This paper has a few limitations. Amongst these: there were only 16 participants and, well, I consider papers by Thoughtful House and by Andrew Wakefield in particular to be somewhat problematic.

Here is the abstract:

Controlled evaluation of the effects of hyperbaric oxygen therapy on the behavior of 16 children with autism spectrum disorders.

Jepson B, Granpeesheh D, Tarbox J, Olive ML, Stott C, Braud S, Yoo JH, Wakefield A, Allen MS.

Thoughtful House Center for Children, Austin, TX, USA.
Abstract

Hyperbaric oxygen therapy (HBOT) has been used to treat individuals with autism. However, few studies of its effectiveness have been completed. The current study examined the effects of 40 HBOT sessions at 24% oxygen at 1.3 ATA on 11 topographies of directly observed behavior. Five replications of multiple baselines were completed across a total of 16 participants with autism spectrum disorders. No consistent effects were observed across any group or within any individual participant, demonstrating that HBOT was not an effective treatment for the participants in this study. This study represents the first relatively large-scale controlled study evaluating the effects of HBOT at the level of the individual participant, on a wide array of behaviors.

One problem with HBOT studies in the past is the attempt to use a placebo like therapy. It seems to this observer at least that it would be quite easy to distinguish placebo vs. real HBOT. The current study avoids that. They took data during a baseline period, during the HBOT therapy weeks and a post-HBOT period. They found that there was no benefit.

These findings diverge considerably from those of Rossignol et al. (2009). The current study controls for the potential ‘‘washing out’’ of the effect when group data are averaged (as must be done in a between-groups design) by carefully measuring potential changes in 11 topographies of behavior over time across 16 individuals. If there was a subgroup for which HBOT was effective, it seems likely that at least one such child would have participated in the current study. The lack of an effect for any participant in the current study makes the existence of such a subgroup seem implausible.

The paper concludes:

News programs and community blogs report that many families of children with autism are using HBOT therapy. The cost of such treatment may range up to $150 per hour. Families report using anywhere from 40 to 120 h of HBOT. These hours are in lieu of other therapies such as applied behavior analysis, speech therapy, and occupational therapy and do not include travel time to the medical center where the therapy is provided. Some families purchase the chambers in order to provide therapy in their home. A number of websites focus on renting ($1,395 per month) and selling ($8,495–27,995) chambers to families. Given the financial and time-investment required for HBOT and the conflicting study outcomes to date, we cannot recommend HBOT as a treatment for autism until such time as more conclusive favorable results are demonstrated.

This is consistent with a previous study which included one of the above authors, Randomized trial of hyperbaric oxygen therapy for children with autism, which concluded:

This study found HBOT to have no significant beneficial effect on ASD symptoms. The experimental design of the current study is of a higher rigor than those employed in previous studies which have suggested that HBOT is effective. Further, the dependent measures included were far more comprehensive than those included in previous studies; therefore it is unlikely that an effect was present which was not detected. Based upon the findings of the current study, HBOT delivered at 24% oxygen at 1.3 atmospheric is not recommended for the treatment of ASD symptoms.

Do’C over at the AutismStreet blog has followed the HBOT research pretty closely. Here is his list of articles skeptical about HBOT.

My own view:
HBOT is expensive, time consuming, not effective for treating autism and will continue to be promoted heavily to parents looking for a way to help their children. There is something profoundly wrong with the world of CAM and autism if they don’t move away from therapies like HBOT.

Questions in advance of study analyzing vaccine court cases for autism

20 Apr

A study is in review looking at the records of the vaccine court and, purportedly, showing that a large number of the cases compensated involve autistics. Robert Kennedy Jr. was prepared to give a press conference on the paper, but this got called off. There has been chatter about a study like this for a few years now and I’ve been curious about what the results would be. I was then curious why the chatter basically died down.

The big question I would have for the author of this study and for Mr. Kennedy should he get his press conference is: how many of these children were compensated for a residual seizure disorder following DPT vaccination?

Why ask that question? The “table” is a list of reactions which the Court will assume are vaccine-caused if they happen within the prescribed time after vaccination. The table is created with the best knowledge available at the time. What happens when the best knowledge available changes? After much deliberation, the table changes. That’s what happened to residual seizure disorders as an injury for DPT vaccines. It was part of the original table, but as new research came out showing that residual seizure disorders were not a risk from DPT vaccines, it was removed from the table.

This isn’t a small issue. The idea that residual seizure disorders could be caused following DPT vaccination are basically what created the Vaccine Act, the special Court and the rest of the program as we know it today.

As of today, there have been 2,699 cases compensated within the program. Of those, by far the largest share is due to the DPT vaccine, with 1,267 compensated claims. That’s 47%. Pretty high percentage especially when you consider the DPT (the whole cell vaccine) was discontinued 15 years ago.

Let’s say that there are a lot of cases in the court where autistics have been compensated for injury. How many of these people were compensate for what was an incorrect assumption of fault? Epilepsy is common in autistics. It is certainly reasonable to think that a number of autistics were compensated for residual seizure disorders.

It will be interesting to see how they address this question in the paper, if they address it at all. It will be interesting to see how Mr. Kennedy addresses this problem, if he addresses it at all.

If you want more details on the history, here is some of it, with some links.

Take a look at the original vaccine injury table (from the mid-late 1980’s) for the DPT vaccine:

DTP; P; DTP/Polio Combination; or Any Other Vaccine Containing Whole Cell Pertussis Bacteria, Extracted or Partial Cell Bacteria, or Specific Pertussis Antigen(s).
Illness, disability, injury, or condition covered: Time period for first symptom or manifestation of onset or of significant aggravation after vaccine administration:
A. Anaphylaxis or anaphylactic shock 24 hours
B. Encephalopathy (or encephalitis) 3 days
C. Shock-collapse or hypotonic-hyporesponsive collapse 3 days
D. Residual seizure disorder in accordance with subsection (b)(2) 3 days
E. Any acute complication or sequela (including death) of an illness, disability, injury, or condition referred to above which illness, disability, injury, or condition arose within the time period prescribed

Take a look at the table now for pertussis containing vaccines:

I. Tetanus toxoid-containing vaccines (e.g., DTaP, Tdap, DTP-Hib, DT, Td, TT)
A. Anaphylaxis or anaphylactic shock 1 0-4 hours
B. Brachial neuritis 6 2-28 days
C. Any acute complication or sequela (including death) of above events 4 Not applicable

It’s a lot shorter. Note specifically that “Residual seizure disorder” is now gone. Here is how residual seizure disorderwas defined:

(B) in the case of any other vaccine, the first seizure or convulsion occurred within 3 days after administration of the vaccine and 2 or more seizures or convulsions occurred within 1 year after the administration of the vaccine which were unaccompanied by fever or accompanied by a fever of less than 102 degrees Fahrenheit.

The change came in 1995. The reasons were not arbitrary, as noted here in the announcement in the Federal Register. They were working from recently published and studies:

During the process of analyzing the comments received in response to the NPRM, the Agency became aware of the imminent publication of a 10-year follow-up study to the National Childhood Encephalopathy Study (NCES) (Madge N., Diamond J., Miller D., Ross E., McManus C., Wadsworth J., Yule W. The National Childhood Encephalopathy Study: A 10-year follow-up. A report of the medical, social, behavioural and educational outcomes after serious, acute, neurologic illness in early childhood. Developmental Medicine and Child Neurology 1993; Supplement No. 68;35(7):1–118; Miller D.L., Madge N., Diamond J., Wadsworth J., Ross E. Pertussis immunization and serious acute neurological illness in children. British Medical Journal 1993; 307:1171– 1176, hereinafter ‘‘Miller study.’’).

Because the Miller study looked specifically at the relationship between vaccine administration and subsequent neurological damage, the Department determined that it should not proceed with publication of the final rule until there had been a sufficient opportunity to consider the conclusions of the new Miller study. Accordingly, the Department asked the IOM to convene a Committee for purposes of evaluating the Miller study in light of the conclusions of its initial report. On March 2, 1994, the Institute of Medicine issued a report entitled ‘‘DPT Vaccine and Chronic Nervous System Dysfunction: A New Analysis.’’

The pubmed link to the NCES study (Madge et al) is here. The Miller study is available in full here. The IOM report is here.

To pull one short quote out as to why the table changed:

The consensus of the Commission was that the original table in the statute requires modification to make it consistent with current medical and scientific knowledge regarding adverse events associated with certain vaccines.

Basically, they found that the research which had been used for the first Vaccine Injury Table was wrong to assume cause for residual seizure disorders following DPT vaccines. Again, I await the chance to see if the upcoming paper addresses this important issue. If a large number of the autistics were compensated for an injury which modern science says isn’t really an injury, the readers of the study need to know this.

Preliminary program for IMFAR

20 Apr

IMFAR, the International Meeting For Autism Research will be held next month (May 12-14). The full scientific program is not up yet (with all the details about who is talking and when), but the preliminary program is online. You can see what sessions are focusing on and see who the keynote speakers are.

Here are some sessions which caught my eye:

Characterizing Cognition in Nonverbal Individuals with Autism: Innocation Assessment and Treatment (an invited symposium–i.e. the conference felt this was an important topic and specifically invited speakers to present their research)

Sex Differences and Females with Autism Spectrum Disorders

Interventions: Behavioral CAM and Psychopharmacology Treatments

In addition, a number of sessions have full or partial focus on adults:

Adults with Autism Spectrum Disorders: Challenges for Epidemiological and Outcome Research (another invited symposium)

Epidemiology: ASD Prevalence, Trends, and Adults with ASD

a poster session on Adults with Autism

Structural and Functional Brain Imaging in Older Children, Adolescents and Adults with ASD

If you missed it, let me draw your attention: there is a session that includes CAM–Complementary and Alternative Medicine

Invitation to Upcoming Seminar on Autism Treatment April 21, 2011 – Open to the Public and Available by Webcast

19 Apr

Below is the announcement from the Office of Autism Research Coordination (OARC). This meeting will be in only a couple of days:

The Office of Autism Research Coordination (OARC), NIMH is pleased to be co-sponsoring the National Institute of Mental Health (NIMH) Autism Awareness Month Seminar: “Advances in Treatment Research.” This event is open to the public, both in-person and by webcast.

The seminar will feature presentations by Dr. Susan Swedo and Dr. Rebecca Landa about their research on innovative drug and behavioral treatments for autism spectrum disorder. For speaker biosketches, please see below.

EVENT DETAILS

Date: Thursday, April 21, 2011

Time: 10:30-11:30 am ET

Location: The Neuroscience Center
Conference Room C
6001 Executive Boulevard
Rockville, Maryland 20852

Webcast Live: http://videocast.nih.gov/summary.asp?live=10144

For in-person attendees, seating is on a first come, first served basis. The event will also be videocast live and archived through NIH Videocast: http://videocast.nih.gov/summary.asp?live=10144 for remote access.

Individuals with disabilities who need Sign Language Interpreters and/or reasonable accommodation to participate in this event should contact Christine Kaucher, Kaucherc@mail.nih.gov, 301-443-4058, and/or the Federal Relay (1-800-877-8339).

Please send questions about this event to nimhpress@mail.nih.gov. We look forward to your participation on April 21st!

SPEAKER BIOSKETCHES

Susan Swedo, M.D.

Dr. Susan Swedo is Chief of the Pediatrics & Developmental Neuropsychiatry Branch, NIMH. She is a board-certified pediatrician, who trained at Northwestern University’s Children’s Memorial Hospital in Chicago, Illinois. Dr. Swedo has authored/co-authored over 100 research publications since joining the NIMH in 1986. Her research has focused on diagnosis and treatment of childhood neuropsychiatric conditions, including Sydenham’s chorea, Tourette Syndrome, Obsessive-Compulsive Disorder (OCD), and autism spectrum disorders. Dr. Swedo and colleagues were the first to describe a post-infectious etiology for OCD and define criteria identifying the PANDAS subgroup (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). Current research efforts are directed at identifying biological causes for behavioral syndromes and developing new and more effective therapies. Dr. Swedo received her B.A. degree from Augustana College in 1977 and her M.D. from Southern Illinois University in 1980.

Rebecca Landa, Ph.D., CCC-SLP

Dr. Rebecca Landa is the founder and director of Kennedy Krieger’s Center for Autism and Related Disorders. She is an associate Professor of Psychiatry in the Johns Hopkins University School of Medicine. Dr. Landa obtained her master’s degree at the Pennsylvania State University and her doctorate at the University of Washington. She completed post-doctoral training in Psychiatric Genetics at Johns Hopkins. She is the recipient of the NIMH Shannon Award for excellent and innovative research, as well as the Rita Rudel Prize for Developmental Neuropsychology. Dr. Landa is the recipient of the 2009 Alumni Recognition Award from the College of Human Health and Development of the Pennsylvania State University.

Dr. Landa’s research has focused on neuropsychological, learning, and communication processes in autism across the lifespan. She was the principal investigator of an NIH STAART Center of Excellence, through which she developed and defined the evidence-base for the Early Achievements intervention for toddlers with autism spectrum disorders. She has pioneered research aimed at identifying the earliest signs of autism through the study of infant siblings of children with autism. Dr. Landa is the author of the Pragmatic Rating Scale, used internationally in autism-related research and clinical practice. Her current research focus is on learning processes in autism, as well as early detection of and intervention for autism spectrum disorders (ASD).

Save the Date: Joint Meeting of the IACC Subcommittee on Safety and Services Subcommittees – May 19, 2011

19 Apr

Next month the Interagency Autism Coordinating Committee will be hosting a joint meeting of the Safety and Services subcommittees. The subject will be seclusion and restraints. The announcement is below:

Save the Date: Joint Meeting of Interagency Autism Coordinating Committee (IACC) Subcommittee on Safety and IACC Services Subcommittee

Please join us for a in-person joint meeting of the IACC Subcommittee on Safety and the IACC Services Subcommittee to discuss issues related to seclusion and restraint and autism spectrum disorder (ASD). The meeting will take place on Thursday, May 19, 2011 from 10:00 a.m. to 4:00 p.m. ET. The meeting will also be available for public access by conference call and live webcast.

Meeting location:
Bethesda North Marriott Hotel and Conference Center
5701 Marinelli Road
Bethesda, MD 20852

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 also be accessible by conference call and live webcast. 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

Webcast: http://videocast.nih.gov

If you experience any technical problems with the conference call or webcast, 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 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
IACCpublicinquiries@mail.nih.gov

93% of US parents trust vaccinations

19 Apr

“Celebrities have no expertise in childhood immunizations or infectious disease,” Freed said. “There is a danger in the media of putting up celebrities as experts on any topic for which they have an opinion, and giving them a platform to share their opinions that is presented as equal to true experts.”

In the first survey, published in the May issue of Pediatrics, researchers used data from a 2009 nationally representative sample of about 1,550 parents of children aged 17 and younger.

About 76 percent of parents said they trusted their child’s doctor “a lot,” 22 percent said they had “some” trust, while only 2 percent said they didn’t trust the doctor.

Parents also trusted other health-care providers and government vaccine experts, but not as much as doctors.

Two percent of parents said they trusted celebrities “a lot,” 24 percent said they trusted celebrities somewhat for vaccine information, and 74 percent said they trusted celebrities “not at all.” Women and Hispanics were more likely to trust celebrities.

A second survey by researchers from the U.S. Centers for Disease Control and Prevention published in the same journal used 2009 survey data from parents of children under the age of 6.

Nearly 75 percent of parents reported their youngest child had received all of the recommended vaccines; another 19 percent said their child would receive the vaccines.

About 79 percent of parents were either confident or very confident in vaccine safety, and about 80 percent said they thought vaccines were important for a child’s health.

But parents still have their concerns. About 22 percent somewhat or strongly agreed that they were concerned about “too many vaccines potentially damaging a child’s immune system,” according to the study.

When asked how many shots parents were comfortable with their child receiving in a single doctor’s visit, 42 percent said one to two; 34 percent said three to four; and 23 percent said “whatever the doctor recommends.”

The authors suggest that pediatricians listen to parents’ concerns and direct them to appropriate resources for information.

“It’s encouraging that in this survey the overwhelming majority said they will get all of their immunizations. That’s a wonderful thing,” said Dr. David Kimberlin, a professor of pediatrics at University of Alabama at Birmingham and a member of the American Academy of Pediatrics Committee on Infectious Diseases. “The noise out there that seems to question vaccine safety is increasingly being discounted and being discounted in a very public way.”

Source.

Indictment for Poul Thorsen

19 Apr

Poul Thorsen was a key person in setting up a CDC funded team to perform epidemiology in Denmark. He has recently been indicted for wire fraud. Below are some of the key parts of the indictment which I feel will be of interest to the discussion:

Count Paragraph 5 of the indictment reads:

Aarhus University and Odense University Hospital administered the CDC grant under the direction of a principal investigator, who was assigned scientific and administrative oversight.

Count Paragraph 6 starts with:

In 2002, after CDC awarded the grant, defendant THORSEN went to Denmark and became the principal investigator, responsible for administering the research money awarded by the CDC to Denmark.

So, at least according to the Grand Jury that indicted him, Poul Thorsen was the “principal investigator” and was assigned “scientific and administrative oversight”. I bring this up because the question posed by many is “how much was he able to influence the scientific results?”. I can’t find the comment right now, but I do recall one collaborator (I believe Madsen) stating that Mr. Thorsen did not have the ability to

From Count Paragraph 8 we get some details as to how the scheme was allegedly pulled off:

“The invoices falsely claimed that a CDC laboratory had performed work under the grant for which Aarhus University owed money.

I.e. he told his University in Denmark that the CDC was doing some of the work and that money had to be transferred back to pay for that. But, it appears that the money was transferred into personal accounts belonging to Mr. Thorsen.

Now, here’s the part that’s going to get a lot of speculation going.

On or about the dates set forth below in the Northern District of Georgia and elsewhere the defendant! POUL THORSEN aided and abetted by others known and unknown to the Grand Jury and for the purpose of executing the aforementioned scheme and artifice to defraud, transmitted and caused to be transmitted by means of wire communication in interstate and foreign commerce, writings, signs, signals, and sounds, that is, wire transfers ln the following amounts from accounts held by Aarhus University in Denmark to accounts held by defendant THORSEN at the CDC Federal Credit Union Atlanta, Georgia:

aided and abetted by others known and unknown to the Grand Jury

Many will ask “were members of his scientific team involved in the money transfers?” Some will just assert it as fact.

Note that the dates involved are from December 2006 to October 2008. This is long after the main autism/vaccine studies were performed. However, if true, these charges do show a man of low personal integrity. This will be used to question his work. However, the fact remains: his work has been replicated. Take the studies from his group out–discard them entirely–and the story remains the same: neither thimerosal nor the MMR vaccine caused an autism “epidemic”. The risk of autism is not higher for those who got vaccines with thimerosal or the MMR vaccine.

Mother who withheld cancer treatment from autistic son sentenced

16 Apr

Kristen LaBrie was sentenced today to 8 years in prison in the death of her son. Her son was autistic and developed cancer. Doctors thought the cancer (non-Hodgkins lymphoma) was treatable, and gave the child a 90% chance of surviving. His mother didn’t give him the chemotherapy and he developed leukaemia. In the end, the leukaemia killed him.

Courtroom video is here (I can’t figure out how to embed the video).

The announcer in that video states “her mental state was weakened after providing 99% of his care”

Her attorney is shown towards the end of the video stating: “She made a decision in her mind to stop the medication. But the decision was not made consciously. It was a result of her losing her ability to be objective”

From the Boston Herald:

LaBrie’s lawyer, Kevin James, told the jury LaBrie was depressed and overwhelmed by caring for her son. She made a “tragic mistake” in stopping her son’s at-home medication, James said, but her actions were not criminal.

From the Boston Globe:

LaBrie, 38, told the jury she stopped giving him the medications because she couldn’t bear to see how sick the side effects made him.

Prosecutors portrayed her as a single mother seething with resentment because she had to care for Jeremy alone.

TIME Magazine posed this question:

Was justice done? It’s hard to know. Certainly, disabled children have rights. But moms do too, and it appears that LaBrie did not have adequate support. Being a single mother of a healthy child is tough enough. Factor in autism and a kid who can’t communicate makes it that much harder. Add non-Hodgkin’s lymphoma, and the burden is fierce.

Do autistics get enough support? No.
Do parents get enough support? No.
Is this an excuse for withholding medication? No.

There are cases through the years of parents of disabled kids either actively or passively assisting in the deaths of those children. How can we as a people figure out ahead of time that these parents are making these tragic, and criminal, decisions?

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