EBD Blog

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.

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.

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’

Although I have followed the promotion of secretin as a treatment for Autism pretty much since the first reports about it, I hadn’t checked on it lately. My initial foray into the topic in 1998 resulted in some skepticism with hedges. As the research evolved, it became clear that the skepticism was warranted.

However, I was surprised that Stephen Edelson, writing in a 2008 article entitled The secretin story: Still a promising treatment for autism,” considered “the studies investigating the efficacy of secretin have been very positive.” Coupled with some vaguely remembered notion that fewer than 50% of physicians discouraged use of secretin, the article gave me pause. I thought, “Hmmm. Maybe you’re earlier analysis was hasty, John.”
Continue reading ‘Secretin reminder’

Writing under the headline “Pros and cons of screening teens for depression,” Brendan Borrell examined some of the issues that sometimes roar around surveying youths to identify those who are depressed or at risk for depression. Mr. Borrell’s article, which is one in a series of articles about depression appearing in the Los Angeles Times, addressed concerns such as parental reservations about testing of their children without permission, false positive identification of a high percentage of students, and the absence of adequate treatment for many who need help.

Mr. Borrell established the importance of the issue in his lead:

By the time a teenager graduates high school, about one out of nine of his or her peers has attempted suicide. Suicide is the third leading cause of death among young people, behind car accidents and homicide, and 10% to 12% of teens ponder suicide every day.

Continue reading ‘Screening teens’

Arne Duncan, US Secretary of Education, wrote to the chief officers of education for each of the states in the US on 31 July 2009 regarding the use of seclusion and restraint in schools. He expressed concern about the testimony heard recently by the Education and Labor Committee of the US House of Representatives, and recommended that states adopt Positive Behavioral Interventions and Support.

My home State of Illinois has what I believe to be one good approach, including both a strong focus upon Positive Behavior Intervention and Supports (PBIS) as well as State regulations that limit the use of seclusion and restraint under most circumstances….

Several other States have also adopted effective seclusion and/or restraint policies, but there are many jurisdictions that have not, leaving students and teachers vulnerable.
Continue reading ‘A. Duncan promotes PBIS’

Citalopram, one of the class of drugs known as selective serotonin reuptake inhibitors (SSRIs) which are usually used to address depression, did not yield beneficial results in a recent study of whether the use of the drug with children and youth with Autism reduced repetitive behaviors. The study, reported by Bryan King and colleagues, included 149 individuals ages 5 through 17 with moderate or severe Autism who were recruited from various parts of the US. Not only did the treated group appear no better than the placebo group, but the children in the Citalopram group were more likely to have adverse outcomes.

Lack of Efficacy of Citalopram in Children With Autism Spectrum Disorders and High Levels of Repetitive Behavior Citalopram Ineffective in Children With Autism
Continue reading ‘Citalopram’s non-effects’

Tom Jackman’s article about Danny Watt to which I referred a few days ago (see this post) is generating a lot of discussion on the Post’s Web site. The comments on Mr. Jackman’s story are informative. For example, at least a half dozen mention having a family member with mental illness. Link to the comments.

The Substance Abuse and Mental Health Services Administration, which is a part of the US Department of Health and Human Services, maintains a Web site where users can search for and learn more about methods for preventing or treating some Emotional and Behavioral Disorders. It’s called the “National Registry of Evidence-based Programs and Practices” (NREPP) and, for those who are concerned about employing or recommending evidence-based practices, it’s worth reviewing.

The National Registry of Evidence-based Programs and Practices (NREPP) is a searchable online registry of mental health and substance abuse interventions that have been reviewed and rated by independent reviewers.

The purpose of this registry is to assist the public in identifying approaches to preventing and treating mental and/or substance use disorders that have been scientifically tested and that can be readily disseminated to the field. NREPP is one way that SAMHSA is working to improve access to information on tested interventions and thereby reduce the lag time between the creation of scientific knowledge and its practical application in the field.

NREPP is a voluntary, self-nominating system in which intervention developers elect to participate. There will always be some interventions that are not submitted to NREPP, and not all that are submitted are reviewed. In addition, new intervention summaries are continually being added. The registry is expected to grow to a large number of interventions over the coming months and years. Please check back regularly to access the latest updates.

Although NREPP originally focused on substance abuse, its coverage is broader now. Look for resources about, for examples, Across Ages; Aggressors, Victims, and Bystanders: Thinking and Acting To Prevent Violence; Al’s Pals: Kids Making Healthy Choices; All Stars; Caring School Community; CASASTART; Children’s Summer Treatment Program (STP); Coping Cat; Creating Lasting Family Connections (CLFC)/Creating Lasting Connections (CLC); Early Risers “Skills for Success”; Families and Schools Together (FAST); Guiding Good Choices; Incredible Years; Keep A Clear Mind (KACM); Keepin’ it REAL; Lions Quest Skills for Adolescence; Multisystemic Therapy (MST) for Juvenile Offenders; Multisystemic Therapy With Psychiatric Supports (MST-Psychiatric); Positive Action; Primary Project; Project Northland; Project Towards No Tobacco Use; Project Venture; Promoting Alternative THinking Strategies (PATHS), PATHS Preschool; Protecting You/Protecting Me; Right Decisions, Right Now: Be Tobacco Free; SAFEChildren; Second Step; SMARTteam; Storytelling for Empowerment; Strengthening Families Program; Strengthening Families Program: For Parents and Youth 10-14; Success in Stages: Build Respect, Stop Bullying; Too Good for Drugs; and Too Good for Violence;

According to Mary Ann Roser of the Austin (TX, US) Statesman, a clinic that provided chelation therapy for Autism is apparently under investigation by federal authorities. Ms. Roser did not report the nature or cause of the investigation of the CARE Clinics.

CARE Clinics, an autism clinic on Bee Cave Road that was being investigated by insurance companies over insurance claims, was raided by the FBI and IRS agents today.

The clinic has been closed, perhaps permanently.

Agents are removing dozens of boxes of documents, but they declined to say what they are looking for. They directed inquiries to Special IRS Agent Mike Lemoine, who did not immediately return a call.

In an article in May of 2009, Ms. Roser reported that the clinic was having financial trouble.

The owner of an Austin-area clinic that treats children with autism — using techniques that are controversial in mainstream medicine — says investigations by three major insurers have left it with a pile of unpaid claims and a crisis: She’s had to lay off most of her staff and drastically reduce the clinic’s hours.

In addition, Kazuko Grace Curtin said the Texas Medical Board is investigating her medical director. She and the doctor — Jesus Caquias — say the investigation is a way of harassing them because they offer nontraditional care for autism patients.

Link to Ms. Roser’s post entitled “Autism clinic raided by federal authorities” and to the earlier article, “Insurance companies question autism clinic’s charges” Check the discussion following the blog post (the first link).

Children and youths with ADHD and their families ought to know about systems of care. Systems of care are networks of services that are coordinated across different agencies and groups within the community. A system of care focuses on the needs of individuals and should be designed so that it takes advantage of that person’s strengths (i.e., is “strengths based”) and unique characteristics (e.g., ethnic background and native language).

Systems of care have been studied extensively in the disciplines focused on Emotional and Behavioral Disorders. They are not just for kids “lost to the streets.” The coordination of services can be beneficial for individuals with ADHD, too.

Learn more about ADHD and systems of care from the SAMHSA, the US Substance Abuse and Mental Health Services Administration. Download a PDF.

On behalf of the families of two children with Autism, a consumer advocacy groups claims that regulators in California (US) are allowing insurers to deny access to needed therapy. Consumer Watchdog seeks to require the Department of Managed Health Care to mandate that insurers pay for treatment based on applied behavior analysis for children with Autism.

KABC LA coverage

On the heels of the recent agreement in Michigan (US), I have to wonder whether advocates for children with Autism are seeing the beginning of a wave of changes in insurance support for early and intensive behavioral treatment of Autism.

Consumer Watchdog, which was previously known as “Foundation for Taxpayer and Consumer Rights,” has a pretty broad agenda. In addition to insurance issues, it addresses patients’ rights, political corruption, corporate excesses, and other topics. Consumer Watchdog’s site has links to multiple items regarding Autism.

Also see coverage by Lisa Girion of the Los Angeles Times: “Autism patients’ treatment is denied illegally, group says“; Ms. Girion covered this topic previously (see 10 Mar 2009). For other earlier posts on EBD Blog about insurance coverage for children with Autism, see 25 Jun 2009 and 20 Sep 2008.