Under the headline “In Switzerland, An Easier Path For The Disabled” on US National Public Radio, Julie Rovner presented a story about international differences in care for individuals with Autism. Ms. Rovner contrasts the experiences of Ellen Wallace, Nick Bates, and their 16-year-old daughter, Tara, with the experiences of Nancy Legendre, Walter Herlihy, and their two daughters, 19-year-old Julia and 17-year-old Lily. Tara, Julia, and Lily all have Autism.
Part of Ms. Rovner’s story is that the children live in different countries—Tara lives near Lausanne (CH), and Julia and Lily live in Gloucester (MA, US)—and, therefore, receive different health care. This feature of their situations affects their options for the girls’ futures.
The parents of Tara, Julia, and Lily are facing the the issues that the parents of many teens with disabilities face: How to provide care for their children during the children’s adulthood. Although it is difficult to generalize from the experiences of these two families except at the very abstract levels, Ms. Rovner’s treatment of the issue is nuanced and informative. Link to the Web-based version of the story.
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I guess one can read geneses as a typographical variant on genes or, as I intended, as the plural of genesis. Using it the latter way: Emerging evidence makes it appear even more unlikely than ever that researchers will be able to identify a relative few genes—let alone the or one gene—for schizophrenia. Writing under the headline “Gene-Hunters Find Hope and Hurdles in Schizophrenia Studies,” the noted science journalist Nicholas Wade published an article summarizing research that points to the conclusion that there may be many different genetic bases for schizophrenia.
Two groups of researchers hunting for schizophrenia genes on a larger scale than ever before have found new genetic variants that point toward a different understanding of the disease.
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The variants discovered by the two groups, one led by Dr. Kari Stefansson of Decode Genetics in Iceland and the other by Dr. Pamela Sklar of the Massachusetts General Hospital, are all rare. They substantially increase the risk of schizophrenia in those affected but account for a tiny fraction of the total number of cases.
This finding, coupled with the general lack of success so far in finding common variants for schizophrenia, raises the possibility that the genetic component of the disease is due to a very large number of variants, each of which is very rare, rather than to a handful of common variants.
This is an article well worth reading. Link to Mr. Wade’s arctile.
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The US Congress will hold a briefing on the transition to adulthood for youth with serious emotional illness. This is an excellent opportunity for people in the US who are concerned about children and youths with Emotional and Behavioral Disorders and their families to reinforce public policies that are aimed at bringing some much-needed services to individuals with EBD who are making the transition for adolescence to adulthood.
Here’s an announcement from the Day Al-Mohamed, of the Public Interest Government Relations Office at the American Psychological Association:
Continue reading ‘Hearing on transition for youth’
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In Nature Medicine, Genevive Bjorn reported that parents of some children are foregoing vaccines, deciding to expose their children directly to other children who have illnesses such as measles or chicken pox. Apparently, parents who choose this method of developing their children’s immunities communicate with each other and, when one child becomes ill, they coordinate meetings—playdates—among the child and others who have not yet developed the immunity.
Continue reading ‘Natural-immunity parties’
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Guillermo Montes and Jill S. Halterman examined the relationships among multiple measures of family financial health and having a child with Autism. Based on earlier documentation that childhood autism is correlated with increases in expenses and decreases in income, they found that “Childhood autism is associated with increased enrollment into school-based settings for preschool-aged children. Parents are 7 times more likely to report that child care problems substantially affected employment decisions if they have a child with ASD.”
BACKGROUND. The impact of childhood autism on parental employment is largely unknown.
OBJECTIVE. The purpose of this work was to describe the child care arrangements of children with autism and to determine whether families of preschool-aged children with autism are more likely to report that child care arrangements affected employment compared with typically developing children and children at high risk for developmental problems.
Continue reading ‘Autism associated with family financial health’
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If you are a person who might have thought “facilitated communication” was too far out, think again. This one will probably make you shake your head in disbelief.
School officials called Colleen Leduc and asked that she go to the school of her daughter Victoria, an 11-year old who has Autism. When she got there, they told Ms. Leduc that they had allegations that Victoria was being sexually abused. Of course, the school officials had performed their legal duty and notified child protective services.
How did they come by such startling knowledge? Leduc was incredulous as they poured out their story.
“The teacher looked and me and said: ‘We have to tell you something. The educational assistant who works with Victoria went to see a psychic last night, and the psychic asked the educational assistant at that particular time if she works with a little girl by the name of “V.” And she said ‘yes, I do.’ And she said, ‘well, you need to know that that child is being sexually abused by a man between the ages of 23 and 26.’”
What’ll folks come up with next?
Of course, you should read the entire story here or here (thanks, Mark), or track the coverage here. Flashes of the electrons to PZ Myers (Pharyngula), Janice Liedl, and BoingBoing.
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