EBD Blog

In the Virginia (US) legislature (which I sometimes call the “House of Burgess” for fun), efforts to mandate coverage of intensive behavioral therapy (AKA “ABA,” “discrete-trial training,” etc.) by insurance policies gained a little momentum 16 February when Senate Bill 464 passed by a nearly 2-to-1, bi-partisan margin. Earlier this legislative session, one similar bill (HB 303) was rejected by a narrow vote (4-to-4) in the committee on Commerce and Labor of the Virginia House but another (HB 34) may still be alive (I’m too uniformed about legislative processes to know).

The summary of the just-passed Senate bill, whose chief patron is Senator Janet D. Howell of Reston (VA, US), is as follows:

Requires health insurers, health care subscription plans, and health maintenance organizations to provide coverage for the diagnosis of autism spectrum disorder (ASD) and for treatment of ASD in individuals from age two to six, subject to an annual maximum benefit of $35,000. This requirement does not apply to individual or small group policies, contracts, or plans, and will not apply to the state employees’ health insurance plan until July 1, 2015. This measure will not apply to an insurer, corporation, or health maintenance organization if the costs associated with coverage exceed one percent of premiums charged over the experience period.

Virginians who are concerned about helping young children with Autism to succeed should contant their representatives to urge passage of this legislation. It is not a perfect solution (for example, the coverage is limited to young children only), but this is a situation in which the perfect should not be the enemy of the good.

Senator Howell’s bill has co-patrons, including R. Creigh Deeds, Mark R. Herring, David W. Marsden, J. Chapman Petersen, Richard H. Stuart, Patricia S. Ticer, Jill Holtzman Vogel, and Mary Margaret Whipple. Way to go to them and to every Virginia Senator who voted for the bill: Blevins, Colgan, Deeds, Edwards, Herring, Houck, Howell, Locke, Lucas, Marsden, Marsh, McEachin, Miller (Y.B.), Norment, Northam, Petersen, Puckett, Puller, Quayle, Reynolds, Saslaw, Stosch, Stuart, Ticer, Vogel, Wampler, and Whipple. Thanks.

• HB 34 Health insurance; mandated coverage for autism spectrum disorder.
• SB 464 Health insurance; mandated coverage for autism spectrum disorder.
• HB 303 Health insurance; mandated coverage for autism spectrum

The state legislature voted nearly 2:1 to reject similar legislation in 2009 (HB 1588 Autism spectrum disorder; mandated health insurance coverage).

Janie Shelton and colleagues at the University of Califonia at Davis reported that women over 40 years of age who give birth have an increased risk of the child having Autism. By studying a large sample of births, the researchers were able to disentangle the relative contributions of maternal and paternal age to the likelihood of having a child with Autism.

This study conflicts with some previous research that pointed at paternal age as a factor in Autism (see the EBD Blog page by Leslie Feldman on Fathers’ Age as Contributor to Risk for Autism). The Shelton et al. analysis expressly examined the relative contributions and points at maternal age as an independent factor. Additional research will help to clarify the relationships.
Continue reading ‘Maternal age increases risk of Autistic offspring’

As most readers probably know, the UK General Medical Council censured Dr. Andrew Wakefield for his research that supposedly shows a link between immunization with the measles-mumps-rubella (MMR) vaccine and autism. The Autism corner of the blogosphere has been rife with discussion (more than what I can up with keep). However, Liz Ditz has been maintaining a catalog of notes pro and con regarding the finding. For those who are interested, read Andrew Wakefield: Dishonesty, Misleading Conduct, and Serious Professional Misconduct: Blog Posts Critical of Verdict; Blog Posts Approving of Verdict

Also see theBBC news coverage, MMR scare doctor ‘acted unethically’ panel finds, and the UK Telegraph story, “GMC brands Dr Andrew Wakefield ‘dishonest, irresponsible and callous’.”

I want to note that readers should understand that the GMC investigation, though very important, did not expressly examine the scientific basis of Dr. Wakefield’s case. The findings discuss whether he was qualified to do the work and followed procedures in seeking approval for it. The scientific strength of the findings from the study in question have been examined extensively by well-qualified researchers and found wanting, though (see, for example, Hornig et al., 2008).

Lord Jones of Cheltenham, a member of the the UK Parliament, has formally asked “what measures are planned to improve services for (a) children with serious emotional disturbance, and (b) adults with mental health illnesses.” The request is in response to recent UK report, Keeping Children and Young People in Mind – Full Government Response to the CAMHS Review that, in turn (and as the title shows), was a response to the government-sponsored review of child and adolescent mental health services (CAMHS).

Keeping Children and Young People in Mind calls for a system of universal services, targeted services, and specialist services accompanied by support for them from local and national government agencies. Get a copy of Keeping children and young people in mind: the Government’s full response to the independent review of CAMHS and visit the Web site of the UK Department of Children, Schools, and Families for more about “services supporting the emotional wellbeing and mental health of children and young people.”

See the Parliamentary records for a written version of the request by Lord Jones.

Buie et al.’s “Take-Away Messages”

In Pediatrics Dr. Timothy Buie and colleagues published a paper providing evidence-based recommendations for pediatricians who evaluate and treat gastrointestinal problems in patients with Autism. The authors, who represent many important scientific groups concerned with allergies, gastrointestinal disorders, nutrition, and similar problems, concluded that children with Autism and related disorders should be assessed and, as approriate, given medical care just as would individuals without Autism. The team encouraged pediatricians to develop and employ “evidence-based algorithms for the assessment of abdominal pain, constipation, chronic diarrhea, and gastroesophageal reflux disease (GERD).”
Continue reading ‘Science, gastro-intestinal problems, diets, and Autism’

In “Hushing the intruders in her brain,” Shari Roan continued her account of childhood-onset schizophrenia as experieinced by January (‘Jani’) Schofield. In the current story, Ms. Roan provided an update about Jani’s and her family’s life and progress. The coverage includes cotent about changes in Jani’s therapy and medications, the family’s living situation, and other aspects of life with childhood schizophrenia. As previously, there are accompanying multimedia features to the story, including this video by Don Kelsen.

Continue reading ‘Jani’s story updated’

Right here in my home commonwealth of Virginia last week, Mira Signe, Vicki Hardy-Murrell, John Morgan, and Margaret Nimmo Crowe explained why it is important that government and private organizations attend to and address issues in children’s mental health. By explaining that Virginia has inadequate services and that one in every five children or youths experience mental health problems at some time during their lives, they made the point that that there is a tremendous need for public focus on these issues. This was the kick-off event for the Campaign for Children’s Mental Health.

The Campaign for Children’s Mental Health is a 3-year sustained effort to make mental health services more available and accessible to Virginia children in need. It will strongly endorse Governor-elect McDonnell’s call for system improvements; urge the General Assembly and state and local government to work collaboratively with the administration to address system deficiencies; and conduct a high-profile three-year advocacy and education drive to build public and political support for improved mental health services for children.

Only about one in 20 of Virginia’s children have access to the key services listed in the accompanying box. So, four out of five children who need these services do not have access to them.

No, Virginia, this is not an acceptable way to treat our children. Let’s do better.

• Down load the press release (source of the excerpt quoted here).
• Read coverage in these newspapers:
  • Lynchburg News and Advance—Coalition pushes mental-health care for children
  • Washington Examiner&mdash:Advocates start bid to expand children’s mental health services under bleak budget;
  • Richmond Times Dispatch— Coalition advocate mental-health care for children
  • Washington Post (blog)—New coalition has AG’s support for mental health reforms
• Visit (and support) the Web site of the Campaign for Children’s Mental Health.
• Download pdfs of “Survey of Community Services Board Child and Adolescent Services” and “Review of Community Services Board Child and Adolescent Services“; these are report by James W. Stewart, Inspector General for Virginia’s Mental Health, Mental Retardation & Substance Abuse Services (now called Behavioral Health and Development Services). The list of key services comes from these reports;
• Visit the < href="http://www.facebook.com/pages/The-Campaign-for-Childrens-Mental-Health/183467424796?v=wall" target="_blank">Facebook page;
• Listen to a brief (3+ min) interview with Ms. Crowe from WMRA: Pushing for Children’s Mental Health Reform.

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.

Continue reading ‘Jaylen is ticked at bullies’

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:

• 7 Year Old Autistic Boy Missing in Snow and Wind in Nova Scotia
• Harsh Autism Reality in Nova Scotia
• Autistic Boy Found After 2 Days of Wind and Snow
• Found After 2 Days in Cold Snowy Woods Autistic Boy Fighting for His Life in Nova Scotia Hospital
• James Delorey, 7 Year Old Autistic Boy, Has Passed Away

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.

Review the transcript for this Autism story here.

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.

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.