Archive for the 'Families' Category

Virginia mental health needs

Published on 22 January 2012 in Advocacy, Families, Mental health, Musings, News, Policy and The press. 0 Comments Tags: , , , , , , , , .

In a statement entitled “A proposal that would assist troubled youths in Virginia” the Washington Post editorial board lent its support to efforts to fund mental health services for children and youth. The editorial, published 11 January 2012, recounted a history of rueful cost cutting and encouraging advocacy in my commonwealth.

A YEAR AGO, Virginia Gov. Robert F. McDonnell (R) proposed slashing millions of dollars from the state’s already badly fragmented and underfunded programs for at-risk children and teenagers. The cuts targeted funding for specially trained foster families and other services for children, including some who posed a danger of violence to themselves and others. The cuts were rejected, and funding restored, thanks to a bipartisan group of lawmakers responding to an outcry from advocacy groups and local governments, which would have borne the brunt of the governor’s proposal. In the end, the debate turned a useful spotlight on a critical hole in the state’s social services safety net.

The Post editorial team explained that the current budget does not contain such cost-cutting measures, but that difficulties for mental health services persist because of other problems (e.g., local government fiscal shortages). In the end, the need for services is great and, as the editorial shows, the need for serious discussion about funding of them is clear. Read the full editorial on the Post’s Web site.

If you’re in Virginia and you can make it to Richmond, join Voices for Virginia’s Campaign for Children’s Mental Health for “Advocacy Day at the General Assembly” Thursday 26 January 2012. If you live somewhere else, scout about for ways you can help support mental health services in your local or regional government.

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“Thinking Person’s Guide to Autism” released

Published on 20 December 2011 in Autism, Families, News and The press. 0 Comments Tags: , , , , , .

The authors of the blog, Thinking Person’s Guide to Autism (TPGA), announced the release of the book under the same title 19 December 2011. From what I can garner by reviewing the list of contributors provided on the blog (I’ve not had a chance to review the book), the collected essays in TPGA will be informative, honest, and evidence-based observations and commentaries written in clear and heartfelt language. It’s a strong enough entry that Steve Silberman, who has the NeuroTribes blog for the PLoSBLOGs (Public Library of Sciences), called it the book of the year.

The editors’ names—Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg—will be familiar to many readers, as I have mentioned their work and they have left comments here on EBDBlog or on sibling projects. They harvested what they considered to be top-notch material about Autism from around the Internet (the list of contributors includes many familiar names), and organized it into this collection so that people searching for the good stuff would have a lot of it in one place.

That’s the point that captured Mr. Silverman’s attention. After setting the stage by providing a capsule history of many of the mistaken paths and some of the productive steps that Autism has taken, in “Book of the Year: Thinking Person’s Guide to Autism,” he points to TPGA and writes,

With this sea-change in mind, my favorite book of the year on autism was curated and self-published by a group of parent-warriors with the express purpose of sparing other parents the grief, isolation, and confusion that followed their own kids’ diagnoses. Called the Thinking Person’s Guide to Autism, it offers helpful, positive, pragmatic, evidence-based advice for making the life of your kid and your family more rewarding and more joyful, starting today. I can’t think of a better holiday gift for someone with a loved one on the spectrum. With current estimates of autism prevalence running at 1 in 110 people in the US, the book deserves a wide readership.

Mr. Silverman’s extensive review echoes much of what the editors wrote about their book. On release of the book, they blogged:

For all today’s smiles and pride, the truth is Thinking Person’s Guide to Autism’s inspiration was our persistent frustration with the negative autism stereotypes and misinformation we faced in parenting our children with autism, or advocating with/amplifying the signal of the amazing Autistic communities. As stated in our Mission, this book is the resource we wish we’d had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.

You can read the complete content of that entry on their blog. Also, here’s a link to the press page about the book and, if you’re already convinced, here’s a link for those who’re looking to go directly to Amazon.

Given the relationship I noted between the editors and me, as minor as it may be, I should also explain that there is no financial relationship among us. I’m not being paid to shill for the book.

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Little sibs of children with ASD have greater risk of Autism

Published on 15 August 2011 in Autism, Families, News, Research and The press. 1 Comment Tags: , , , , , , , .

In Pediatrics Professor Sally Ozonoff and her colleagues of the Baby Siblings Research Consortium have reported data indicating a substantially higher risk for Autism among siblings than had been previously found. Based on data from studies in the 1980s, estimates of the risk of Autism in a child given that an older sibling had Autism were in the range of 3 to 5%, the Consortium found that the risk may be as great as four times higher than that, perhaps as high as 20%.

The researchers in the Consortium used very careful methods in which they found 664 later-born, biological siblings of a child with Autism when that younger sibling was, on average, about 8 months old. They followed the development of the siblings and assessed whether they had the symptoms of Autism when they were 36 months old. They found almost 19% had scores above the cut-off for Autism. The risk for Autism was even greater for boys and when more than one older sibling had Autism.
Continue reading ‘Little sibs of children with ASD have greater risk of Autism’

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ASAT newsletter pending

Published on 27 July 2011 in Administration, Autism, Families, Professsional development, Research, The press and Treatment. 1 Comment Tags: , , , , , , , .

Do you want to know more about evidence-based interventions for Autism? Are you weary of wading through a lot of over-hyped-and-not-well-tested methods hoping to find one gem? Do you come back to EBD Blog because you pine for trustworthy news about Autism?

There is an alternative, another source: The Association for Science in Autism Treatment has a regular newsletter and a new one is about to be released. If readers hustle their bustles, they can register in time to receive the next issue which includes (according to a mailer I received)

  • A feature article in which Dr. Thomas Zane discusses the adoption of Fad Treatments in Autism.
  • Four research article summaries (ranging from treatment comparisons to prevalence of adults with autism).
  • Spotlight on a new organization Advancing Futures for Adults with Autism.
  • Two Clinical Corners (Food Selectivity and Help with the Dentist).
  • Consumer Corner (Review of Transition Resources for Adolescents and Adults with Autism).
  • An in-depth group interview about fostering positive portrayals of science-based treatment in the media.

…and for the rest, you’re just going to have to read to find out!

Here’s a link to register for the newsletter: http://www.asatonline.org/signup. I encourage folks to do.

And, if you ever forget how to find ASAT, you don’t have to poke around looking for this message. Just check over there in the siderail. You’ll find it listed in the “Web Resources.”

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Research participation opportunities

Published on 13 July 2011 in Assessment, Autism, Families, News, Research and Treatment. 0 Comments Tags: , , , , , , , , , , .

In an accompanying PDF I have listed studies that are currently seeking children (both female and male) with Emotional of Behavioral Disorders (especially autism spectrum disorders) as participants (some include adults, as well) that are registered with ClinicalTrials.gov, a service of the US National Institutes of Health (NIH). The studies have diverse purposes: They may be observing different events (whether overt behavior or neurochemical activity) or they may be testing different therapies (ranging from behavioral to medical methods). Many are sponsored at least in part by the NIH, but some have funding from universities or even private industries. Because of its affiliation with NIH, ClincialTrials.gov is more likely to represent medically oriented studies and studies that use rigorous scientific methods (i.e., randomized clinical trials or RCTs), but this is not exclusively the case. Readers should examine the studies carefully.

The list is not exhaustive (I used “autism” in the search, so there are many more studies that could be located by using other terms), and I’ve provided only some of the data about each study in the table, but you can learn a fair bit about individual studies. For example, one can learn about study number NCT00198107 that is entitled “Evaluating the Effectiveness of Aripiprazole and D-Cycloserine to Treat Symptoms Associated With Autism.” It focuses on individuals with Autistic Disorders and examines an intervention (in this case, comparing drugs called Aripiprazole D-cycloserine to placebo in a randomized design with double-blind (Subject, Caregiver, Investigator, Outcomes Assessor) | Primary Purpose: procedures. The study began 1-Sep-05 and will end 1-Sep-11 (making it odd that it is still listed as open, no?).

To locate additional information about a particular study, copy the NCT ID number, go to ClinicalTrials.gov, and enter that number into the search box. Download the PDF here (10 pages).

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Virginia campaign promotes action agenda

Published on 22 June 2011 in Families, Mental health, News and The press. 0 Comments Tags: , , , , , , , , , , , .

The Campaign for Children’s Mental Health outlined an agenda for improving mental health policy for children and youths in the US commonwealth of Virginia on 14 June 2011. The “Action Agenda” expresses the need for Govenor Bob McDonnell to exert leadership in three policy areas so that the problems of 100,000 minors with mental health issues are addressed:

  • Children with mental health disorders and their families need to have a full array of high quality treatment and support services in their own communities, no matter where in Virginia they reside.
  • Children with serious mental health disorders who require public sector services need to have access to the same array of services regardless of payment source or custody status in order to maximize the impact of and curb inappropriate use of public dollars in the treatment system.
  • Children with mental health disorders and their families should be recognized and included as experts on their own and their children’s treatment needs.

Visit the 1 in 5 Website (see it over in the sidebar, too) and download the full statement of the Action Agenda.

I am very glad to have and I hope others will join me in signing a petition to support this effort. Isn’t it great to have this effort right here in Virginia? Do you have similar efforts in the area where you live?

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Altering Autism insurance coverage legislation in VA

Published on 30 March 2011 in Autism, Families, News, Policy, The press and Treatment. 0 Comments Tags: , , , , , , , , , , , .

Writing in the Richmond Times Dispatch, Olympia Meola reported on potential changes in support for insurance coverage for therapy for children with Autism in the Commonwealth of Virginia in the US. Under the headline “McDonnell will try to amend autism bill,” Ms. Meola described developments in Governor Robert “Bob” McDonnell’s plans for altering recent legislation requiring insurance payments for treatment.

Gov. Bob McDonnell is expected today to reveal proposed changes to a bill requiring insurance coverage of autism treatments, and some could be substantial alterations to what the General Assembly passed.

Conversations were continuing as of Tuesday between the governor’s office, lawmakers and interested parties about possible changes to a measure that would require coverage of autistic children ages 2 to 6.

Advocates of the bill said some significant tweaks could be “deal breakers.”

The amendments floated in the past week range in scope, from technical to more substantial, including changes in who could supervise treatment and when the law would take effect, according to those familiar with the proposals.

Link to Ms. Meola’s story.

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EBD and GLBTQ

Published on 23 February 2011 in Families and Musings. 0 Comments Tags: , , , .

No, it’s not alphabet soup, and yes, discussion about gay, lesbian, bisexual, transgender, and questioning youth does belong here. Some parents of children and youth with EBD will need to know about how to respond to questions about children’s sexuality.

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ASAT newsletter’s available

Published on 8 February 2011 in Autism, Families, News, Research, The press and Treatment. 0 Comments Tags: , , , , , , , , , , , .

For those readers interested in Autism who do not already subscribe to the newsletter of the Association for Science in Autism (ASAT), I have a nourishing treat: The latest issue of Science in Autism Treatment (SIAT) is now available. You can learn about ASAT and SIAT by going to the ASAT homepage and scouting about the many valuable resources there, including learning about and subscribing to the SIAT newsletter. Subscribe and you won’t have to depend on my flaky reminder system to let you know when one arrives in my mailbox!

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Autism legislation in Virginia

Published on 6 February 2011 in Autism, Families, News, Policy and The press. 0 Comments Tags: , , , , , , .

Under the headline “Autism legislation advances in Virginia” in the Washington Post Fredrick Kunkle and Anita Kumar reported about the slow-but-significant progress that parents in the US state of Virginia have made in advancing toward mandating coverage of treatment for Autism by insurance companies. That the advances run counter to many conservative US legislators’ opposition to health policies that mandate coverage for those in need of services and that it is occuring in an election year in Virginia, a state that usually tilts toward the conservative, makes the analysis especially intriguing.

In the beginning, several Northern Virginia families whose children have autism thought that their wrenching stories would be enough to get some help from their representatives in the General Assembly.
Continue reading ‘Autism legislation in Virginia’

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On the tech trail

Published on 10 November 2010 in Autism, Families, News and The press. 1 Comment Tags: , , , , .

I’m not usurping the responsibilities of our assistive tech friends, but for those who are interested, over on Squidalicious one can find a good first-person run-down of iPad applications being used by a boy (young man now?) with Autism.

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Mental Health Initiative

Published on 9 November 2010 in Autism, Depression, Families, Musings, News, Policy, Schizophrenia and Treatment. 0 Comments Tags: , , .

Sometimes folks lose sight of the fact that disability and mental health issues are international in scope. They’re not confined just to one’s own neighborhood, locality, geopolitical area, etc. Fortunately, there are groups that transcend borders (you can probably think of the names of some well-know organizations that function internationally), and there are some in EBD, too. The Open Society Mental Health Initiative is an example:

The OSI Public Health Program’s Mental Health Initiative aims to ensure that people with mental disabilities (mental health problems and/or intellectual disabilities) are able to live as equal citizens in the community and to participate in society with full respect for their human rights. The Mental Health Initiative focuses on ending the unjustified and inappropriate institutionalization of people with mental disabilities by advocating for the closure of institutions and the development of community-based alternatives. The initiative works in Central and Eastern Europe and the former Soviet Union (read more about the history of mental health policies in this region).

The OSI initiative is more than a one-trick pony. It’s about a lot of things, and its foci include children with Autism, mental health issues, and more. I encourage readers to check the site. Here is a link to the OSI MHI home page.

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