From the Boston Globe's In the Parenthood blog
One of the hardest things about parenting older kids who are on the autism spectrum is recognizing that the issues they're dealing with as teens are very different from the ones they dealt with in elementary school. It's so much easier -- and more comfortable -- for us to think about birthday parties and playground friendships than it is to tackle the prom and dating, isn't it?
"Suddenly, the question is not simply, 'How do I teach my child this or that?' but a much more complicated 'How do I teach my child not to need me to teach him anymore?'" writes Claire Scovell LaZebnik, who has an 18-year-son on the spectrum, in Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger's.
Thursday, May 6, 2010
Wednesday, May 5, 2010
Child With Autism Interviews Mom About Raising Him
Interesting video on Huffington Post this morning.
In Dave Isay's new book, "MOM," he collects the best pieces of mom-related stories from StoryCorps. Over six years, the organization put up booths where normal people could interview each other about anything they wanted. This one, just animated by StoryCorps, is a 12-year-old autistic boy interviewing his mom about what it's like to raise him. We were struck by his perceptiveness, his mom's honesty, and the amazing relationship that comes through in just four minutes.
In Dave Isay's new book, "MOM," he collects the best pieces of mom-related stories from StoryCorps. Over six years, the organization put up booths where normal people could interview each other about anything they wanted. This one, just animated by StoryCorps, is a 12-year-old autistic boy interviewing his mom about what it's like to raise him. We were struck by his perceptiveness, his mom's honesty, and the amazing relationship that comes through in just four minutes.
Tuesday, May 4, 2010
Autism and the Media
Just a brilliant piece by Neil S. Greenspan, immunologist and clinical pathologist in Cleveland, on Huffington Post. Realize that journalists are looking for stories that will get hits on the Web, sell papers and attract viewers, but sometimes these stories may not reflect the real struggles and challenges.
In the United States, April was National Autism Awareness month. Whether or not media coverage of autism increased over the past few weeks, there was already a great deal of coverage. Unfortunately, much of that coverage has been focused more on raising awareness than advancing understanding. A recent interview on National Public Radio (NPR) illustrates some of the recurring weaknesses of many of these articles, radio segments, and television features.
There is a tendency for groups that serve or advocate on behalf of those with disabilities to focus on individual success stories, even if rare, to fend off the prejudice and even hostility that sometimes arise in the general public and are directed towards those with various diagnostic labels. I saw this first hand with elements of the learning disabilities (LD) community that, at least in some instances, were reluctant to acknowledge that some kids with LD are below average in standard measures of intelligence. The most vulnerable members of this population actually had even fewer options than the individuals who could be presented to the broader public as pretty much "regular" kids, with their "learning differences" minimized.
A human interest story about an individual's struggles with a disability that is tied up in a pretty metaphorical bow at the end of the piece will undoubtedly attract more reader/listener/viewer attention than a more demanding discursive, analytical discussion, especially if the conclusions are not upbeat. Perhaps, it would be counterproductive to completely eliminate the uplifting narratives focused on one individual at a time, but if understanding, not just awareness, of autism is to be advanced, a bit more of the sort of journalism focused on conveying information and not just eliciting emotion will be needed.
In the United States, April was National Autism Awareness month. Whether or not media coverage of autism increased over the past few weeks, there was already a great deal of coverage. Unfortunately, much of that coverage has been focused more on raising awareness than advancing understanding. A recent interview on National Public Radio (NPR) illustrates some of the recurring weaknesses of many of these articles, radio segments, and television features.
There is a tendency for groups that serve or advocate on behalf of those with disabilities to focus on individual success stories, even if rare, to fend off the prejudice and even hostility that sometimes arise in the general public and are directed towards those with various diagnostic labels. I saw this first hand with elements of the learning disabilities (LD) community that, at least in some instances, were reluctant to acknowledge that some kids with LD are below average in standard measures of intelligence. The most vulnerable members of this population actually had even fewer options than the individuals who could be presented to the broader public as pretty much "regular" kids, with their "learning differences" minimized.
A human interest story about an individual's struggles with a disability that is tied up in a pretty metaphorical bow at the end of the piece will undoubtedly attract more reader/listener/viewer attention than a more demanding discursive, analytical discussion, especially if the conclusions are not upbeat. Perhaps, it would be counterproductive to completely eliminate the uplifting narratives focused on one individual at a time, but if understanding, not just awareness, of autism is to be advanced, a bit more of the sort of journalism focused on conveying information and not just eliciting emotion will be needed.
Ousted State Senator Takes To Boxing Ring for Autism
NEW YORK -- This time, his fighting skills are going to good use.
Disgraced ex-state Sen. Hiram Monserrate has agreed to climb into the ring to raise money for kids with autism.
It's a subject that hits home: His teen son is autistic.
"I hope to become a leaner and nicer Hiram because of this," said the Queens pol, who was booted from Albany in February by fellow pols after he was found guilty of beating girlfriend Karla Giraldo.
Disgraced ex-state Sen. Hiram Monserrate has agreed to climb into the ring to raise money for kids with autism.
It's a subject that hits home: His teen son is autistic.
"I hope to become a leaner and nicer Hiram because of this," said the Queens pol, who was booted from Albany in February by fellow pols after he was found guilty of beating girlfriend Karla Giraldo.
TV Academy To Honor Shows 'With a Conscience'
LOS ANGELES (AP) — A "CSI: Crime Scene Investigation" episode about prejudice and a documentary, "Unlocking Autism," about efforts to understand the causes of autism and to find therapies to treat the developmental disability, are among eight programs to be honored Wednesday for demonstrating the power of TV.
The third annual Television Academy Honors spotlighting shows found to exemplify "television with a conscience" will be hosted by Dana Delany. Presenters are scheduled to include former Vice President Al Gore, Joel Grey and Maria Shriver, the first lady of California and former NBC News correspondent.
The third annual Television Academy Honors spotlighting shows found to exemplify "television with a conscience" will be hosted by Dana Delany. Presenters are scheduled to include former Vice President Al Gore, Joel Grey and Maria Shriver, the first lady of California and former NBC News correspondent.
Monday, May 3, 2010
Opinion: Safety Must Be Ensured in N.J.
From the Star Ledger's Editorial Page.
NEWARK, N.J. -- Tara O’Leary was just 28 when she died in the care of the Division of Developmental Disabilities. Doctors say she starved to death. She weighed 48 pounds.
Authorities say O’Leary was kept in a room that reeked of urine, neglected by caretaker Debra Sloan in a state-licensed foster home in Bloomsbury. And while O’Leary crawled in her own feces, caseworker Bridget Grimes wrote sunny reports that described her happily playing with puzzles and longing for piano lessons.
When O’Leary finally was rushed to the hospital after months of neglect, it was too late to save her; she died in November 2008.
Sloan and Grimes have been indicted on 17 counts, including aggravated assault, official misconduct and neglect. The Division of Developmental Disabilities insisted this was an isolated case. But a lawsuit said another woman who had been in Sloan’s care passed away from an untreated intestinal infection after moving to another home.
On Friday, the governor signed legislation that will create a registry of paid caregivers and volunteers who have abused, neglected or exploited individuals with developmental disabilities.
There are 41,000 developmentally disabled persons under the state’s care. Are they safe? Are they fed? Are they healthy? Are caseworkers doing their jobs? Is anyone watching them? We need definitive answers.
NEWARK, N.J. -- Tara O’Leary was just 28 when she died in the care of the Division of Developmental Disabilities. Doctors say she starved to death. She weighed 48 pounds.
Authorities say O’Leary was kept in a room that reeked of urine, neglected by caretaker Debra Sloan in a state-licensed foster home in Bloomsbury. And while O’Leary crawled in her own feces, caseworker Bridget Grimes wrote sunny reports that described her happily playing with puzzles and longing for piano lessons.
When O’Leary finally was rushed to the hospital after months of neglect, it was too late to save her; she died in November 2008.
Sloan and Grimes have been indicted on 17 counts, including aggravated assault, official misconduct and neglect. The Division of Developmental Disabilities insisted this was an isolated case. But a lawsuit said another woman who had been in Sloan’s care passed away from an untreated intestinal infection after moving to another home.
On Friday, the governor signed legislation that will create a registry of paid caregivers and volunteers who have abused, neglected or exploited individuals with developmental disabilities.
There are 41,000 developmentally disabled persons under the state’s care. Are they safe? Are they fed? Are they healthy? Are caseworkers doing their jobs? Is anyone watching them? We need definitive answers.
Study: Gender Dictates Autism Symptoms
Nice job by the students at the University of Oregon's student newspaper.
EUGENE, Ore. -- Recent studies have found that males and females with an autism spectrum disorder (ASD) experience different symptoms according to gender. Educators and students in the education field still have a lot to learn about ASD.
"We don’t get it like we thought we did," said Mary Ann Winter-Messiers, coordinator of Project Preparing Autism Specialists for Schools.
A lecture and training session Friday, titled "Understanding Girls on the Autism Spectrum: We Have a Lot to Learn," welcomed students, professors, professionals and the parents of children with ASD. The speakers focused on new information that shows females with autism have different symptoms than males with autism.
Historically, little research attention has been paid to females.
EUGENE, Ore. -- Recent studies have found that males and females with an autism spectrum disorder (ASD) experience different symptoms according to gender. Educators and students in the education field still have a lot to learn about ASD.
"We don’t get it like we thought we did," said Mary Ann Winter-Messiers, coordinator of Project Preparing Autism Specialists for Schools.
A lecture and training session Friday, titled "Understanding Girls on the Autism Spectrum: We Have a Lot to Learn," welcomed students, professors, professionals and the parents of children with ASD. The speakers focused on new information that shows females with autism have different symptoms than males with autism.
Historically, little research attention has been paid to females.
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