Tag Archive for 'Parents'

“Thinking Person’s Guide to Autism” released

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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Gaining perspective

Are you up to speed with the views of self-advocates in the Autism community? If not, you can get a good start—maybe even the beginning of a crash course—by reading a post by Zoe (over Shannon Des Roches Rosa’s name, which alert readers will recognize) over on Thinking Person’s Guide to Autism. In “The Self-Advocate/Parent Dialogues, Day One: Zoe,” Zoe represent concerns about having others speak for people with Autism. As one can infer from the title, it’s the first installment in a series of posts, so y’all can check back for more later. You might even want to watch it unfold, and check the comments as they accrete. Should be interesting.

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Research participation opportunities

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

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

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

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

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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Follow up of Fast Track

These are the lead researchers in the Conduct Problems Prevention Research Group with their current universities (over the years, some have changed affiliations):

The Conduct Problems Prevention Research Group, a team of composed of seven of the most eminent US scholars studying the development of childhood behavior disorders, published another in its series of papers tracking the outcomes of the children it has been following in a long-term study about preventing acting out disorders. In this longer-term follow-up analysis, the team found that the effects were still present for the children who showed the most risk of having behavior disorders in the first place.

This project and these folks are the big time. The work has been conducted very carefully and cannot be represented as an example of over-hyped findings.
Continue reading ‘Follow up of Fast Track’

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On the tech trail

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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Brain features associated with neonatal risk for schizophrenia

Differences in neonate brains

Writing in the American Journal of Psychiatry, John Gilmore and colleages reported that the size and structure of the brains of newborn boys—but not girls—who are at risk for developing schizophrenia differ from those of their peers. Using multiple scanning methods at different times during gestation and infancy, the researchers compared the brains of offspring of mothers who have schizophrenia to the offspring of mothers who do not have schizophrenia; they found that high-risk boys had larger brains and larger lateral ventricles than baby boys whose mothers did not have psychiatric illness.

Because the risk of developing schizophrenia is much greater for close relatives of schizophrenics, the differences between the groups provides a strong indicator of later potential development of disease. Professor Gilmore wondered “Could it be that enlargement is an early marker of a brain that’s going to be different?”
Continue reading ‘Brain features associated with neonatal risk for schizophrenia’

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FDA warns seller of chelation product

The U.S. Food and Drug Administration (FDA) issued a warning letter to the producer of a product that is sometimes used by people hoping to eliminate heavy metals from children’s bodies (e.g., chelate mercury from children with autism). In a letter addressed to Boyd D. Haley of CTI Science Inc., Teresa C. Thompson of the Cincinnati District Office of the FDA cited a host of problems in the classification and marketing of the product, OSR#1. Among these problems are the following:
Continue reading ‘FDA warns seller of chelation product’

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Autism mixed with an iPad

Thanks to Liz Ditz, I learned about this fun testimonial from Shannon Rosa:

My son Leo’s life was transformed when a five-dollar raffle ticket turned into a brand-new iPad. I’m not exaggerating. Before the iPad, Leo’s autism made him dependent on others for entertainment, play, learning, and communication. With the iPad, Leo electrifies the air around him with independence and daily new skills. People who know Leo are amazed when they see this new boy rocking that iPad. I’m impressed, too, especially when our aggressively food-obsessed boy chooses to play with his iPad rather than eat. I don’t usually dabble in miracle-speak, but I may erect a tiny altar to Steve Jobs in the corner of our living room.

Link to The iPad: a Near-Miracle for My Son With Autism

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