Archive for the 'Families' Category

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Jani and Oprah

Published on 13 October 2009 in Families, News, Schizophrenia and The press. 0 Comments

January First made Oprah!

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.”

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National Standards Project

Published on 11 October 2009 in Autism, Families, News, Research, The press and Treatment. 0 Comments Tags: , , , , , , , , .

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’

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Chromosomes linked to Autism

Published on 8 October 2009 in Autism, Causes, Families, News, Research and The press. 1 Comment Tags: , , , , , , .

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.

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Screening teens

Published on 6 August 2009 in Acting in, Assessment, Depression, Families, News, Prevention and The press. 0 Comments Tags: , , , , , , , , , , , .

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’

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Following Danny Watt’s story

Published on 31 July 2009 in Acting in, Bi-polar, Depression, Families, News, Schizophrenia, The press and Treatment. 0 Comments Tags: , , , , , , , , .

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.

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Snyder on Sears

Published on 31 July 2009 in Autism, Families, News and The press. 0 Comments Tags: , , , , , .

Over on Science-Based Medicine, John Snyder has an extended post that systematically analyzes the assertions of Robert Sears about vaccinating children. The title is “Cashing In On Fear: The Danger of Dr. Sears.” Highly recommended.

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Media matters

Published on 30 July 2009 in Bi-polar, Depression, Families, Musings, Schizophrenia and The press. 0 Comments Tags: , , , , .

The recent posts about news coverage of mental illness (e.g., “Danny Watt’s Story” and “Jani Illustrates Troubles“) has had me thinking about how popular media portray these problems. Over on Psych Central, Margarita Tartakovsky has an article entitled “Media’s Damaging Depictions of Mental Illness” that I recommend to readers of EBD Blog. In addition to discussing myths that are too commonly perpetuated by media such as television and film, she recommends ways to help distinguish between accurate and inaccurate portrayals of mental illness.

Link to Ms. Tartakovsky’s article.

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Danny Watt’s story

Published on 28 July 2009 in Bi-polar, Families, News, Policy, Schizophrenia, The press and Treatment. 1 Comment Tags: , , , , , , , , , , , , , .

The parents of Daniel Watt, a youth who had multiple problems, told the story of their son’s life and suicide. Tom Jackman of the Washington Post reported the story of Danny and his parents, helping explain some of the problems of addressing the needs of children with multiple diagnoses—co-morbid schizoaffective disorder and substance abuse, in Danny’s case.

Danny Watt once leapt from a moving train. He hurtled through the windshield of a rolling car. Got pummeled by drug dealers. Overdosed. Swallowed rat poison. Tried to hang himself.

In his tumultuous 21 years, Danny Watt danced with death in the most amazing, horrible ways. In the end, two college students spotted him facedown in the cold, murky water of the C&O Canal one afternoon in April 2008. The medical examiner said Danny had drowned.

Continue reading ‘Danny Watt’s story’

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Swimming with Autism

Published on 22 July 2009 in Autism, Families, News and The press. 0 Comments Tags: , , , , .

In “‘Benefits Go Beyond Sports’: Autistic Children Find an Outlet In Swimming,” Bill Oram of the Washington Post reports about the social benefits of participating in sports.

Justin Etherton, 13, a swimmer in the Montgomery County Swim League, is autistic. Swimming provides him a social outlet, and has been “the best thing that’s ever happened to him and to us,” his mother said.

Read Mr. Oram’s article. Check Toni L. Sandys’ photos.

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Chelation clinic closed

Published on 19 July 2009 in Autism, Families, News, The press and Treatment. 0 Comments Tags: , , , , , , , .

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).

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Systems of care for ADHD

Published on 9 July 2009 in ADHD, Families, The press and Treatment. 0 Comments Tags: , , , , , , , , , , , .

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.

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Consumer Watchdog on Autism therapy insurance

Published on 1 July 2009 in Autism, Families, News, Policy and The press. 0 Comments Tags: , , , , , , , , , , , .

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.

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