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US Autism & Asperger Association
June 9, 2011

Welcome to USAAA WeeklyNews, an email newsletter that addresses a range of topics on Autism Spectrum Disorders including Asperger's Syndrome.


A Disabled Boy’s Death, and a System in Disarray
ABUSED AND USED

By DANNY HAKIM
New York Times

Jonathan Carey did not die for lack of money.

boyNew York State and the federal government provided $1.4 million annually per person to care for Jonathan and the other residents of the Oswald D. Heck Developmental Center, a warren of low-rise concrete and brick buildings near Albany.

"We literally both fell under the weight of the grief, collapsed to the sidewalk, just uncontrollably weeping. It’s hard to explain the pain and the trauma that one experiences getting that kind of news. You’re in a cloud. It’s like you don’t even know what’s going on around you.”

Yet on a February afternoon in 2007, Jonathan, a skinny, autistic 13-year-old, was asphyxiated, slowly crushed to death in the back seat of a van by a state employee who had worked nearly 200 hours without a day off over 15 days. The employee, a ninth-grade dropout with a criminal conviction for selling marijuana, had been on duty during at least one previous episode of alleged abuse involving Jonathan.

“I could be a good king or a bad king,” he told the dying boy beneath him, according to court documents. Full Story on A Disabled Boy’s Death, and a System in Disarray.

"Last year, one supervisor was accused of four different episodes of physical and psychological abuse of residents within a span of two and a half months; another employee bragged on Facebook about “beating retards.”

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Government Confirms Testing of Children with Autism for Presence of XMRV Retrovirus

From Age of Autism
By Kent Heckenlively, Esq.

nih logoI received the following e-mail a few weeks back from the National Institute[s] of Health concerning my inquiry into XMRV (xenotropic murine leukemia virus related virus) infection and children with autism. Here is the reply:

Dear Mr. Heckenlively:

Thank you for writing to the National Institutes of Health (NIH) concerning the presence of the XMRV retrovirus in children with autism. As the Acting Director, Office of Science Policy, Planning, and Communications, National Institute of Mental Health (NIMH), I have been asked to respond on behalf of Dr. Francis Collins, NIH Director.

"As you may be aware, NIH intramural researchers are examining the XMRV retrovirus in samples from approximately 100 children in an autism subtyping study: Neuroimmunologic Investigations of Autism Spectrum Disorders.

NIH is dedicated to addressing the growing public health challenge that autism spectrum disorders (ASD) present. In FY 2010, NIH invested $160 million from its annual appropriation in research on autism and another $58 million in funding provided through the American Recovery and Reinvestment Act. In addition, NIH issued several funding opportunity announcements to encourage research designed to elucidate the etiology, epidemiology, diagnosis, treatment, and optimal means of service delivery related to ASD. Full Story on Government Confirms Testing of Children with Autism for Presence of XMRV Retrovirus.

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Learning to be parents to our adult children

by Dan Gottlieb, PhD

dan GottliebDear Dan,
I need some guidance about dealing with adult children. When I look for books on the subject, most of what I find concerns children with addiction, mental illness, etc. My adult children are quite successful by society standards. Both are highly respected professionals in high-powered jobs.

"In many families, parents do not grow with their children, which sets up a conflict down the pike. Children will fight in whatever way they can for autonomy, and sometimes, when they move out of the house, a door closes.

They live such intense lives professionally and with their own families and friends that there is little room for anyone else. The other in-laws feel the same exclusion. Yes, I have my own life, work, and friends and I live away from them, but I would like a better relationship.

They live by multitasking. Even a phone conversation is shared with their being on a computer. I would appreciate any suggestions. - Worried in West Chester

"Your frustration reminds me of the 1974 folk song by Harry Chapin, "Cat's in the Cradle," in which a young boy begged his busy father for more time, but the father was too busy. Then the father aged and begged his adult son for more time, but now the son was too busy.

Dear Worried,
Just this week, a friend told me how concerned she was about her 20-year-old daughter who seemed to be acting out in college. Another friend told me that his 30-year-old son was getting a divorce. And a former colleague told me that her physician son cut off all communication with her because he found her to be intrusive. And that was just this week!

There are lots of books about raising children and dealing with aging parents. But you are right. We have little guidance about how to be parents of adult children.

So here are some generalizations. When children are very young, they need us to manage every bit of their lives, and the more we anticipate and care for their needs, the safer they are. Full Story on Learning to be parents to our adult children.

"Remember, as our children age, they don't need our management and they don't even need our advice unless they ask for it. What they do need is our unyielding faith in their goodness and their ability to deal with whatever adversity may lie in their future.

To leave comments, go to our Blog.

About Dr. Dan - Dr. Daniel Gottlieb has been practicing "his craft of psychotherapy" for 40 years and has learned many lessons about what it means to be human. He shares his lessons on "Voices in the Family," an award-winning mental health call-in radio show aired on WHYY 90.9 FM, Philadelphia's local public radio station. . He has written several books and was a columnist for the Philadelphia Inquirer for 15 years. More on Dr. Dan...


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In this issue:

  • A Disabled Boy’s Death, and a System in Disarray
  • Government Confirms Testing of Children with Autism for Presence of XMRV Retrovirus
  • Learning to be parents to our adult children

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