EBD Blog

Trine Tsouderos and Patricia Callahan, the Chicago Tribune reporters who have provided exemplary examinations of unsupported therapies for Autism, continued their series of stories on the topic with a piece entitled “Autism: Kids Put At Risk” in the Los Angeles Times. In this briefer (though still well-researched) article they devote most of the coverage to examining the physicians who prescribe chelation, hyperbaric oxygen therapy, anti-testorsterone drugs, mega-doses of vitamins, and many other unproven regimens and other doctors who have serious doubts about the consequences, including the safety, of such therapies.

Read “Autism: Kids Put At Risk.” See the related articles “On shaky ground with alternative treatments to autism,” “Four autism treatments that worry physicians,” “Chelation based on faulty premise,” and “Autism therapies can get undeserved credit.” Also, see related EBD Blog posts about the investigative journalism of these writers: Dangerous therapy and Baseless, risky therapies for Autism

Writing for MSNBC, Brian Alexander provided a thorough examination of the history and devastating consequences of some facilitated communication (FC). After making quick reference to the case of Rom Houben that has been in the news recently, in “Dark shadows loom over ‘facilitated’ talk: Opening minds or telling tales? Michigan family torn apart by abuse claims,” describes the wrenching effects of facilitated accusations of sexual abuse on the family of Aislinn Wendrow.

On Nov. 27, 2007, just a few days after returning to school from Thanksgiving break, 14-year-old Aislinn Wendrow created a shock wave by saying her father had “banged” her. Aislinn didn’t say it, exactly; she typed it on the keyboard of a digital device with the help of Cynthia Scarsella, her facilitator and an employee of Michigan’s Walled Lake school district.

The Wendrows’ story is not news; the charges against the parents were dropped in September 2008. Mr. Alexander intertwines the story of the Wendrow family’s nightmare with FC with the story of how FC was developed, adopted, challenged and found wanting, and yet is still being promoted. It’s an example of good journalism.

Link to “Dark shadows loom over ‘facilitated’ talk.” For more about the case of Mr. Houben, see “Deserving a careful test” on Spedpro. For more about the case of the Wendrows, see L. L. Brasier’s “Parents cleared in sex case file suit: Our autistic kids suffered, they say” from the Freep.

File this one in “things that work.”

In a smallish-but-well-done study, Geraldine Dawson and colleagues reported in Pediatrics that the Early Start Denver Model (ESDM)—a variant of the behavioral methods that have often been found to be effective—produced salutary benefits for young children with Autism. The children who received the ESDM intervention had significantly greater gains in IQ than those in a community treatment control and their social behavior kept pace with the standards for their non-disabled peers while the social behavior of the community controls declined relative to the standards.

OBJECTIVE To conduct a randomized, controlled trial to evaluate the efficacy of the Early Start Denver Model (ESDM), a comprehensive developmental behavioral intervention, for improving outcomes of toddlers diagnosed with autism spectrum disorder (ASD).
Continue reading ‘ESDM benefits toddlers’

Michael Aman and co-authors (and there are at least 25 of them) reported that a combination of medication and parent training in behavior management was more effective than medication alone in reducing behavior problems. They assigned families randomly assigned to receive either risperidone as well as parent management training or risperidone alone. After 24 weeks, they assessed the children’s behavior with parent-report measures. The parents who learned to use behavior management strategies reported lower levels of non-compliant behavior and irritability.
Continue reading ‘Meds plus behavior management for Autism’

The second installment of Chicago Tribune reporters Trine Tsouderos’ and Patricia Callahan’s investigation of alternative treatments for Autism is available. Liz Ditz cited it in her comment on my earlier post about the first installment of this exemplary piece of journalism, but I am repeating the link here so that it will be readily apparent to readers. For even more on the coverage of questionable alternative therapies by Ms Tsouderos and Ms. Callahan, see the post entitled “The Unethical Treatments that ‘Autism is Vaccine Injury’ (And Other False Premises) Give Rise To” on Liz Ditz’s blog.

While we’re on the subject of ineffective interventions, I want to revisit facilitated communication (FC). The US commonwealth of Massacheusetts apparently is considering a bill that will require teachers to learn to use FC. In “An Act To Improve Augmentative And Alternative Communication Opportunities For Children With Disabilities,” the legislative houses of Massachusetts are proposing to revise regulations for licensing educators to ensure that special and general education teachers have received training in using augmentative and alternative communication procedures, including FC.

The legislation, introduced into the senate by Senator Cynthia Stone Creem of the First Middlesex and Norfolk district and into the house by Representative Garrett J. Bradley of Plymouth, provides this definition of alternative and augmentative communication:

The term “alternative and augmentative communication” shall be defined as methods of 26 communication other than oral speech that enhance or replace conventional forms of expressive 27 and receptive communication to facilitate interaction by and with persons with disabilities who 28 are nonverbal or have limited speech, including, but not limited to: specialized gestures and 29 signs; communication aids such as charts, symbol systems and language boards; mouth sticks; 30 facilitated communication; and electronic communication devices such as switches, head 31 pointers, eye tracking, dynamic displays, auditory scanning and speech synthesizers.

Although the bill was introduced in January 2009 (and apparently has been introduced in previous sessions), I can find no record of whether it has been passed. It was referred to a joint committee on education and there was a “Public Hearing date 10/20,” the legislative record shows nothing more as of the date I’m writing this. When originally introduced, it was Senate Bill 00223, but it may now be listed as Senate Bill S02692. Anyone know the status?

Flash of the electrons to Gina Green for her post APBA Sponsor, Affiliate Oppose MA Legislation Promoting Bogus Technique alerting me to this questionable legislative activity. She pointed me to an article about a hearing on the legislation; fortunately, some folks objected to including FC in the law.

Writing in the Chicago (IL, US) Tribune under the headline “Autism treatments: Risky alternative therapies have little basis in science” Trine Tsouderos and Patricia Callahan reported about the background and myriad problems with many treatments used as therapy for children with Autism. They expose the lack of evidentiary support for therapies ranging from mega-doses of vitamins to chelation and show the relationships between practitioners of these therapies and a couple of organizations well-known among those who follow Autism.

The Tribune found children undergoing daylong infusions of a blood product that carries the risk of kidney failure and anaphylactic shock. Researchers in the field emphatically warn that the therapy should not be used to treat autism.

Children are repeatedly encased in pressurized oxygen chambers normally used after scuba diving accidents, at a cost of thousands of dollars. This unproven therapy is meant to reduce inflammation that experts say is little understood and may even be beneficial.

Children undergo rounds of chelation therapy to leach heavy metals from the body, though most toxicologists say the test commonly used to measure the metals is meaningless and the treatment potentially harmful.

Reporters Tsouderos and Callahan conducted interviews with an impressive array of advocates for the therapies (including representatives of Autism One, Autism Research Institute, and Defeat Autism Now) and doubters (mostly serious scientists). They combed through the weak and barely related research that many of the advocates use as well as the evidence showing limited or no benefits of the therapies.

All in all, these reporters deserve kudos for the unflinching thoroughness of their reporting. I encourage readers to read, reread, and disseminate the article. Here’s a link to “Autism treatments: Risky alternative therapies have little basis in science.” Flash of the electrons to Liz Ditz, whose Twitter post about this article alerted me to it.

On the heels of the report by D. Granpeesheh and colleagues that hyperbaric oxygen therapy (HBOT) did not benefit individuals with Autism comes a news story that uncritically describes the use of the therapy with children. In “Special Report: Hyperbaric Oxygen Therapy for Autistic Children,” Jenni Joyce of TV station WHPTV (PA, US) fell for anecdotal reports and, apparently, did not check the evidence about effectiveness of the therapy, something that I used to think was a basic journalist duty.

It’s one of the newest treatments for children with autism and some doctors say the results are phenomenal. It’s called Hyperbaric Oxygen Therapy. It’s being offered at the Robert M. Lombard Oxygenation Medical Center in Columbia, Lancaster County. It’s where one local toddler, Jonathan Musselman, was treated for his autism.

Continue reading ‘Reporter falls for HBOT’

Doreen Granpeesheh and colleagues reported that a randomized trial of hyperbaric-oxygen therapy did not produce beneficial effects on children with Autism. The results of the study—double-blind, placebo controlled procedures, making it scientifically sound—showed no significant differences in direct observations of toy play, hyperactivity, appropriate vocalizations, vocal stereotypy, physical stereotypy, aggression, self-injury, property destruction or on standardized assessment employing a host of psychological measures.
Continue reading ‘More reason to doubt benefits of HBOT’

Children and youths who were treated with “atypical antipsychotic medications” (aripiprazole, olanzapine, quetiapine, or risperidone) gained substantial weight and had changes in their metabolism in a study reported by Christoph Correll and colleagues in the Journal of the American Medical Association. The drugs, which are used to treat childhood schizophrenia, bipolar disorder, and (sometimes) Autism, also caused changes in blood lipids.

The medications, which are also known as second generation antipsychotics, are marketed under the names shown in the table at the right.

On average, the children’s weight gains differed across the different medications, ranging from 8.5 kg with olanzapine to 4.4 kg with aripiprazole. For better than half of the children, the gains amounted to more than 7% of their body weight. Changes in the children’s metabolism varied by drug, too; olanzapine caused the largest problems and aripiprazole caused no changes in metabolism (e.g., cholesterol).

Continue reading ‘Meds cause weight gains’

The National Autism Center released the report of its National Standards Project. The project was designed to identify interventions that are or are not beneficial for individuals with Autism or Autism Spectrum Disorder and it presents known therapies in three categories: established, emerging, unestablished (including a subsection on “ineffective/harmful treatments”).

In summary, the National Standards Project, a primary initiative of the National Autism Center, seeks to:

• describe the age, diagnosis, and skills/behaviors targeted for improvement associated with treatment options
• identify the limitations of the current body of research on autism treatment
• offer recommendations for engaging in evidence-based practice for ASD

Continue reading ‘National Standards Project’

In a letter to Nature, Lauren Weiss, Dan Arking, the Gene Discovery Project of Johns Hopkins, and the Autism Consortium report that they have analyzed multiple data sets and identified potential loci on human genes for susceptibility for Autism. They found possible linkages on four chromosomes (5p15, 6q27, and 20p13) and, coupled with other data, the single nucleotide polymorphism on 5p15 pointed to SEMA5A as an important location for additional study. These results may lead to a means of screening; if rare variations can be identified reliably, they would permit families to seek intervention very early in the lives of affected individuals, thus greatly increasing the chances of improved outcomes.

Although autism is a highly heritable neurodevelopmental disorder, attempts to identify specific susceptibility genes have thus far met with limited success1. Genome-wide association studies using half a million or more markers, particularly those with very large sample sizes achieved through meta-analysis, have shown great success in mapping genes for other complex genetic traits. Consequently, we initiated a linkage and association mapping study using half a million genome-wide single nucleotide polymorphisms (SNPs) in a common set of 1,031 multiplex autism families (1,553 affected offspring). We identified regions of suggestive and significant linkage on chromosomes 6q27 and 20p13, respectively. Initial analysis did not yield genome-wide significant associations; however, genotyping of top hits in additional families revealed an SNP on chromosome 5p15 (between SEMA5A and TAS2R1) that was significantly associated with autism (P = 2 10-7). We also demonstrated that expression of SEMA5A is reduced in brains from autistic patients, further implicating SEMA5A as an autism susceptibility gene. The linkage regions reported here provide targets for rare variation screening whereas the discovery of a single novel association demonstrates the action of common variants.

Link to the abstract.