Jaylen Arnold is not happy about bullying, and he’s telling anyone who will listen to stop bullying now. According to the Web site for Jaylen’s Challenge, Jaylen Arnold, the third grader who is the central figure in the anti-bullying campaign that uses his name and has been featured frequently in the media recently, has Tourette’s disorder, Asperger’s Syndrome, and obsessive-compulsive disorder. Jaylen’s effort to end bullying is apparently abetted by his parents (Howard and Robin Holt Arnold) and someone named Paul, who helps with the Web management.
This site is the dream of a wonderful little boy named Jaylen. Jaylen suffers from Tourette Syndrome. He wants to educate people about bullying, bringing attention to the difficulties he faces in his day to day living . He hopes to make you laugh, make you cry, but most importantly make you aware that those with disabilities are not only normal – but incredibly special people. With your help and support he can spread the word and teach people to help…not bully.
The story of James Delorey is, sadly, an instructive one. For those who have children, the possibility of a daughter or son being lost is a frightful concern. For those whose children have disabilities and are even more vulnerable than other children, having a missing child must be even more frightful.
James Delorey, a boy with Autism, was lost for many hours in the woods near the neighborhood of his home. Harold Doherty, the father of a child from the same Canadian province, chronicled the story on Facing Autism in New Brunswick. Here are references to his posts:
In “Autism: A journey of recovery” on the “American Morning” section of the Web site of CNN, reporter Kiran Chetry relates the story of Jake Exkorn and his family. Jake’s remarkable story is one of great losses in competence as a toddler, followed by persistent, intensive therapy during his childhood and substantial progress.
Hill Walker and colleagues reported that the First Step to Success program benefitted young children at risk for developing emotional or behavioral disorders. In a longitudinal study of the three-year program conducted in Albuquerque (NM, US), the researchers found substantial reductions in disruptive behavior and improvements in social functioning.
In a press release, Professor Walker said, “Albuquerque was the first opportunity we had to mount a large-scale study of the program using a randomized control group, the gold standard for research. First Step has been implemented widely, but not [studied] in this way.” Continue reading ‘First Step takes off’
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.
In the November 2009 issue of Pediatrics, Tanya Froehlich and colleagues reported that maternal smoking during pregnancy and children’s exposure to lead were associated with diagnoses of attention-deficit hyperactivity disorder (ADHD). Each factor alone was linked to ADHD, and the two in combination had an even greater association ADHD.
OBJECTIVE: The study objective was to determine the independent and joint associations of prenatal tobacco and childhood lead exposures with attention-deficit/hyperactivity disorder (ADHD), as defined by current diagnostic criteria, in a national sample of US children. Continue reading ‘ADHD and smoking and lead’
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’
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.
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.
Drug
Brand Name
clozapine
Clozaril
risperidone
Risperdal
quetiapine
Seroquel
olanzapine
Zyprexa
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).
I’m a tad late getting to this, as the segment aired 6 October 2009, but I’m glad to note that Ms. Winfrey covered the story of Jani, the 6-year-old girl with childhood schizophrenia whose story Shari Roan candidly reported last June in the Los Angeles Times.
Because it’s coverage by someone whose authority comes from television, there are video segments to be seen. Try this one. Link to the section of Ms. Winfrey’s show’s Web site about the segment.
From the Web site for the Ms. Winfrey’s show, I also learned that Jani’s father has created a site devoted to Jani. The site lists it’s purposes as promoting “awareness… that severe childhood mental illnesses do exist and can strike at any age” and “that these kids are the way they are because of BIOLOGY, not because of abuse, environment, or bad parenting. Every parent we know of a mentally ill or autistic child is deeply committed to their child’s welfare.”
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
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.
EBD Blog provides news and commentary about Emotional and Behavioral Disorders in children and youths. These problems have sometimes been called "emotional disturbance" or even "serious emotional disturbance." Whatever they are called, these problems are real, painful, and important. They often affect other people as well as having deleterious effects on school, social relations, and other aspects of the individuals' lives.
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