August. Summer is in full swing, the temperatures are hot. Many places in the USA are experience record heat and drought conditions. Gardens and farmers' markets brim with abundant fresh produce that is delicious and healthy. Those who have access to water where they can cool off are fortunate.
Here at GRASP we have a new crop of articles for you to ponder.
Support Groups Manager
The Global and Regional Asperger Syndrome Partnership, Inc.
By mel fabrikant Thursday, July 05, 2012, 12:26 PM EDT
Zachary Hamrick, a 22 year old with autism, will compete in the Aquaphor New York City Triathlon on July 8. The event is an Olympic Distance race consisting of a 1500m swim, a 40k bike, and a 10k run. That’s about 1 mile swimming in the Hudson River, 25 miles riding on the Westside Highway and 6 miles running through Central Park.
According to Stephen Hamrick, Zach’s father who trains and races with him, “Zack has been aided on his path to becoming an accomplished triathlete by the years of intense training he has received at Alpine Learning Group, a program for students with autistic spectrum disorders. Spending hours each day learning behaviors that did not come naturally to Zack, he picked up a whole lot of perseverance and discipline. Doing what’s difficult, even painful, has become easy enough for him. Now he has no problem putting one foot in front of the other and repeating, repeating, repeating.”
While Zack’s success has been recognized by several distinctions and medals, he has no real sense of competition,” continued Hamrick Sr. “He swims, bikes, runs because he enjoys doing those things, not to finish ahead of others or turn in a great time. On the other hand, he does love wearing those medals.” Zach has no sense of danger in traffic and cannot go out on his own. He depends on his father or a friend for instructions (turn right, go fast, etc.).
Events like this one tend to be the province of adults who have the endurance that comes with physical maturity. When Zach ran the New York City Triathlon in 2009, he was younger than 99% of the other entrants. It’s believed he was the only cyclist who aimed for and hit every puddle on the bike course and probably the only triathlete who sang from the start of the swim to the finish of the run (mostly Disney, but alternating with entire sound tracks from Dr. Seuss, Curious George and the Spice Girls videos).
Contrary to popular belief, autistic spectrum disorders do not preclude athletic achievement, though athletes with autism spectrum disorders generally prefer individual physical pursuits to team sports. Zachary Hamrick proves what can be achieved when an athletic activity becomes the special interest of an individual with an autistic spectrum disorder. Many experts would credit Zack’s achievements to the intense focus, adherence to routine, and to some of the unique cognitive abilities that come with autism spectrum disorders.
Zachary Hamrick is currently a member of the Alpine Learning Group Adult Program. Alpine Learning Group opened its doors on 1989 as one of the first nonprofit autism education centers in Bergen County. Located in Paramus, Alpine Learning Group serves learners and families across the lifespan through its education, adult and outreach programs.
Family wants understanding of Asperger's
Author: CHELSEA McDOUGALL - email@example.com
Date: July 15, 2012
Publication: Northwest Herald, The (Crystal Lake, IL)
The great irony of Eric’s Kisly’s disability is that its traits are exactly what would make him a model employee. Focused. Honest. Hardworking. Intelligent. But the Woodstock High School graduate’s handicaps speak much louder than how he looks on résumé paper. Kisly, 23, had a form of autism called Asperger syndrome. In a typed suicide note left for his loved ones, Kisly described the difficulties he had finding a job.
Early Intervention Could Help Autistic Children Learn to Speak
Follow-up study shows long-term language improvement for kids with autism after an intensive, targeted behavioral therapy program
By Marissa Fessenden | July 17, 2012 |
Autistic children struggle with many obstacles, including learning to speak. And, experts have noted, if these children learn verbal skills by age five, they tend to become happier and higher-functioning adults than do their nonverbal peers. Thirty years ago, psychiatrists expected only half of all autistic children would gain speaking abilities. Recent studies, however, indicate that as many as 80 percent of children with autism can learn to talk. One such study in 2006 showed that toddlers who received intensive therapy aimed at developing foundational oral language skills made significant gains in their ability to communicate verbally. Now researchers have followed up with a number of those kids and found that most of them continued to reap the benefits of that therapy years after it had ended.
Several early behaviors build a foundation for language. These abilities have also been linked to whether a child can anticipate another person's mental state and use that understanding to explain and predict behavior. Developing this "theory of mind" may be a central difficulty for children with autism. Kasari's team targeted two of the early behaviors in their work: The first is the ability to engage in symbolic play, in which one object represents another—a child pretending a doll is his parent, for instance. The second is joint attention, wherein a child divides focus between an object and another person. This behavior can be thought of as "sharing looks." For example, when a child points to show a playmate a toy train, she looks at the moving train and checks to see if her playmate is engaged.
In the initial study, Connie Kasari of the University of California, Los Angeles, and her colleagues evaluated 58 children between three and four years old in a randomized controlled study. The children played with trained graduate students for 30 minutes each day over a period of five to six weeks. The time-intensive interventions focused on either symbolic play or joint attention. A third group, serving as a control, participated in playtime but was not directed to complete tasks and goals.
Independent clinical testers assessed the children before and after the intervention. They measured language and cognitive skills with standard tests, evaluated play level and diversity, and interaction with a caregiver. The initial study, published in 2006, showed that the joint-attention group was better at showing and pointing behavior whereas the symbolic play group showed more symbolic behavior, both in terms of play level and diversity. Twelve months after the therapy period, Kasari's group assessed the kids' language skills. On a standard language test, the two intervention groups showed spoken language improvement that corresponded to 15 to 17 months of development; the control group had only made a nine-month gain during the same period. Younger children and children at the lowest language levels prior to the intervention made the largest improvements. Kasari was initially surprised the groups showed such progress. The most important aspect of both interventions, she says, was "engaging the child for periods of time with a social partner."
In the new study, Kasari's team revisited 40 of the children five years later. The researchers found that 80 percent of them, who were by then eight to nine years old, still had "useful, functional spoken language." A small number of children remained nonverbal, which Kasari says is typical for studies of children with autism. Some children do not seem to be able to learn useful language by age five, but studies suggest it is possible to acquire language later. The new studies show a method for teaching preschool-aged children basic skills that will help them develop language by five and continue to make improvements years later. The researchers detail their findings in the May issue of the Journal of the American Academy of Child and Adolescent Psychiatry.
Previous studies have targeted skills important to language development, but many only looked at small groups of children or infrequent treatment sessions, Kasari notes. Understanding what makes a treatment successful or not is vital. "We need to distill down the active ingredients in early intervention," she says, "then take these elements and match them to programs."
This kind of long-term follow-up is rare. "The study is important in terms of raising expectations of what can be accomplished, and in raising awareness of how much work it takes," says Sally J. Rogers, a psychiatry professor with the MIND Institute at the University of California, Davis. Rogers, who was not involved in the research, emphasized that because the subjects were very young, the study builds on evidence indicating that the earlier the intervention the better—and children even younger than the toddlers in the original study could benefit. This has important pubic policy implications, she says, because there is little funding for children younger than three.
Finding a one-size-fits-all approach to helping autistic kids talk may be tricky, however: Autism affects each child differently, Rogers observes, and even the best interventions will have varied outcomes.
By Michelle Diament, Disability Scoop, July 20, 2012
The mother of a teen with autism is suing Autism Speaks for allegedly rescinding a job offer after she requested workplace accommodations so she could care for her son.
Simone Greggs, 44, says that officials at Autism Speaks violated the Civil Rights Act and the Americans with Disabilities Act when the nonprofit took back an offer of employment this spring just days before she was scheduled to start work.
In a complaint filed in the U.S. District Court for the District of Columbia earlier this month, Greggs said that she was supposed to start her new job as a walk events manager at Autism Speaks’ Washington, D.C. office in early May after successfully completing five different interviews, a pre-employment background check and a drug test.
But Greggs said everything changed after she asked her new employer if they would accommodate an alternate work schedule or allow her to work from home on Wednesdays when her son’s school let out early.
Greggs was told that such accommodation would not be possible. She then made other arrangements for her son, but was subsequently informed by Autism Speaks managers that they were “rescinding the employment offer because they did not want to make any accommodations for the care of her autistic child,” the court filing says.
In her suit, Greggs is seeking compensatory and punitive damages. Nonetheless, she said the legal action is not about money but principle for her. Once a supporter of Autism Speaks, Greggs said she is outraged.
“They say one thing and they do another,” the Upper Marlboro, Md. mom said of the nonprofit. “You can’t say that you’re for helping families with children with autism and then you can’t give me an accommodation.”
Balancing work with caregiving obligations is often a struggle for parents of those with autism. A 2009 study found that moms of children on the spectrum were interrupted at work one out of every four days compared to less than one in 10 days for other moms. Another study, published this spring, found that moms of children with autism earn an average of 56 percent less than parents of typically developing kids. Accordingly, several researchers have cited workplace flexibility as a top need for parents raising children with special needs.
In Greggs’ case, in addition to losing out on the job she thought was lined up, she turned down another job offer from the Democratic National Committee in April because she expected to be working at Autism Speaks, the complaint said.
“It was devastating,” said Greggs who has also filed a complaint with the U.S. Equal Employment Opportunity Commission. “I couldn’t believe that this happened.”
The lawsuit, which was served Monday, names Autism Speaks’ former president Mark Roithmayr; Ann Gibbons, executive director of the group’s Washington, D.C. office; Tracey Wilbanks, regional director; and Pat DeSaules and Linda LePage in the organization’s human resources department.
Autism Speaks addressed the matter in a statement to Disability Scoop late Thursday.
“Autism Speaks is committed to employing parents and other family members of people with autism, as well as individuals on the spectrum,” the organization said.
Should all the Disabled have Voting Rights?
Rights of 22,000 in state are at stake in federal suit.
The summer of Minnesota's discontent over voting rules has spun off a related fight: whether disabled people who cannot handle their own affairs should retain the right to vote.
The debate has set off alarms among disabled people and their advocates, adding another layer of controversy to the legal and political battle over whether Minnesota needs a photo ID requirement for voters, changes in Election Day registration and a new provisional balloting system.
"I want to vote," said Dave McMahan, a 61-year-old military veteran with mental illness who lives in a Minneapolis group home and has his affairs controlled by a legal guardian. "I've been through sweat and blood to vote. I don't want my rights taken away, because I fought for my rights here in the United States and expect to keep them that way."
Equally passionate is Ron Kaus of Duluth, an activist and plaintiff in a federal lawsuit that has raised the issue. Citing allegations in Crow Wing County in 2010, Kaus worries that disabled people have been hauled to the polls and told whom to vote for, which would be a crime. "It's one of the sickest form of exploitation, political abuse," he said.
At stake are the voting rights of an estimated 22,000 people whose affairs are controlled in varying degrees under guardianships. Under current law, they retain the right to vote unless a judge takes it away. That presumption, and its apparent conflict with the state Constitution, has been questioned in the lawsuit and in debate at the Legislature earlier this year.
Adults who have court-appointed guardians to handle their affairs retain the right to vote unless a judge intercedes. Many under guardianship were profoundly disabled children who were placed under guardianship when they became adults so someone, often a parent, would have the legal authority to make medical and life decisions for them. Others are frail seniors without family, or those with severe, chronic mental illness.
Fears of manipulation
Rep. Mary Kiffmeyer, R-Big Lake, a former secretary of state who has led the charge for a photo ID requirement, also sponsored a bill this year to tighten up guardianship voting. She is the guardian for her own disabled sister, and views the limits as a way of protecting vulnerable adults from being manipulated at the polling place.
The bill stalled, but the cause has been taken up in a wide-ranging federal lawsuit filed in February by the Minnesota Voters Alliance, state Rep. Sondra Erickson, R-Princeton, and Kaus and his organization, the Minnesota Freedom Council. They note that the Minnesota Constitution prohibits those under guardianship from voting.
"Some people are so disabled, and they don't have the mental capacity to vote, and caregivers shouldn't bring them to the polling place," said Erick Kaardal, lawyer for Kaus and other plaintiffs. He said those who are so disabled that their affairs are completely controlled by a guardian should have to show a judge they are capable of voting.
Such a person could be asked "Do you know who the candidates are?" and "Do you understand a ballot question?" Kaardal suggested.
Stephen Grisham of Alternate Decision Makers Inc. of Minneapolis, whose firm oversees the care of some 80 adults and children, feels differently. He said the vast majority of his clients do not vote. One who does is an 89-year-old woman who asked him to help her get a photo identification, in case the photo ID ballot initiative passed. "That only took us four months," Grisham said, referring to the difficulty of obtaining her birth certificate.
Kiffmeyer and Kaus point to a 2010 incident at the Crow Wing county auditor's office in Brainerd.
A few days before the election, a local man, Monte Jensen, saw what appeared to be special-needs people casting absentee ballots, apparently with prodding and assistance from their group-home workers. State law allows any voter to request and receive assistance, but it is a crime for helpers to influence voters or mark the ballots if the voter cannot communicate a choice.
Crow Wing County Attorney Don Ryan said his office and sheriff's deputies fully investigated the allegations, with help from the FBI. "I made the decision, we couldn't prove improper voter assistance," he said.
No charges were filed, and Ryan said he does not believe that workers were using the clients to influence the election, as some in the community have charged.
But Kiffmeyer said the case showed the need for stiffer laws. Her bill would have ended the presumption that people under guardianship automatically have the right to vote. In the future, she said, a judge would have to make that determination.
Disability advocates say the right to vote, even if exercised infrequently, was an important part of the 1960s and 1970s reforms that moved mentally retarded and mentally ill people out of state hospitals and into community settings. The Supreme Court has ruled that "guardianship" as cited in the Constitution can be defined by the Legislature, getting around the constitutional prohibition, they argue.
Lawyer Robert McLeod, a guardianship expert who helped write the current law, argued against Kiffmeyer's bill and against the court petition.
"We're talking about taking a fundamental liberty and stripping it from 22,000 people," he said.
While abuse may occur, he said, that does not justify penalizing the disabled people who may be victimized. "The elderly are scammed every day by people calling them on the phone," he said. "Do we deprive the elderly of a phone?"
Brian Erickson, a 40-year-old Army veteran, is another of Grisham's guardianship clients who has a mental illness. "Once you're known as a vulnerable adult, they put controls on you," said Erickson, who lives his life by the orderly schedule worked out by his guardians and Veterans Affairs. When he went under guardianship, he had to give up his pets, his right to carry a firearm and agree to take medication that makes him gain weight.
He didn't want to give up his right to vote. "As a vulnerable adult, the only way we can speak is by voting. I don't want them making laws that take that right taken away from me," he said.
50 Cent has found himself in hot water. The rapper, who has a rather colorful Twitter presence -- and 6.8 million followers -- recently made statements that offended people with autism and parents of kids with autism. Given that new data shows one in 88 American kids are on the autism spectrum, that's a very large community to ostracize.
(This story has been updated. Scroll down for new information.)
The ugly tweets were in response to an eager fan who wrote to 50: "Release the album or get shot again." The rapper allegedly tweeted back, "yeah just saw your picture fool you look autistic." And, he didn't stop there. "I dont want no special ed kids on my time line follow some body else," he posted later.
Unsurprisingly, the twitterverse was horrified. Actress and autism activist Holly Robinson Peete, took to her own website to write an open letter to 50 Cent expressing her disappointment with his actions. Peete asked questions and presented the facts:
Do you even know what autism is? And what exactly does “autistic” look like? Do you know how wildly prevalent autism is? 1 in 88 have it. That’s 1 in 54 boys. Families suffer a social stigma you will never know. It is a financial and emotional drain for millions...
And then, she showed 50 what autism really looks like -- her 13-year-old son Rodney.
He is in special ed. He loves rap music and is a HUGE fan of yours. He’s a tremendous kid. He has to deal with so much trying to fit in. This isn’t helping.
At the very least, Peete requested that 50 delete his insulting tweets. He has obliged, but many parents in the special needs community aren't satisfied. One mother, Miz Kp, whose 4-year-old son is on the autism spectrum, is waiting for a real apology. "In addition to giving an apology, 50 Cent needs to learn more about autism and the families affected by it. Lack of exposure can also breed ignorance," she wrote on her blog, Sailing Autistic Seas.
Many other autism bloggers have chimed in. Jeannette, aka AutismMumma, wrote "autism is known as the invisible disability," and then posted several photos of kids on the spectrum. Babble writer, Joslyn Gray, who has two children with autism reposted a video she made in April (for Autism Awareness Month) in response to the controversy. In real life, the video says, those with autism don't necessarily "look" like Rain Man or Forrest Gump -- that's only what movies would have you believe. In reality, as evidenced by her 3-minute photo montage, kids with autism look like any other kid: happy, smiley and adorable.
Some parents on Twitter have suggested boycotting 50 Cent's products and music. But Phil Evans, a 25-year-old with Asperger Syndrome thinks the rapper's misstep should be used as a lesson -- "Think before you talk." On his blog My Autistic Life, Evans wrote:
"Offending those who have autism may not have been intentional but when thoughts are released into such a public space, always consider what is being said when people could be affected by it."
UPDATE: On Sunday, 50 Cent apologized for his comments:
I realize my autism comments were insensitive, however it was not my intention to offend anyone and for this I apologize.
By Alex Pareene Tuesday, Jul 10, 2012 02:19 PM EDT
Hey, are you a conscientious hippie parent too concerned about the strange chemicals in the vaccines to get your child vaccinated? Well, you’re the worst, and you’re part of the reason kids in the U.S. are suddenly dying of preventable diseases, including ones the industrialized world thought had been effectively wiped out.
After 10 infants died of whooping cough in California a couple of years back, they successfully got it under control by requiring vaccinations for mid..., but now, of course, it’s an epidemic in Washington state, where there are lots of parents delaying or forgoing vaccines for their precious children. (Similar outbreaks are happening elsewhere in the country, too.)
Whatever became of the monster who did the most to popularize, in the U.S., the formerly fringe idea that vaccines are dangerous, former television personality and model Jenny McCarthy? She is still around, being awful everywhere.
The entertainment industry is actually determined to force McCarthy on us, whether we care about her or not. And not just as a performer — though she’s currently the host of some awful summer dating/competition/reality/human-garbage-embarrassing-themselves show on NBC — but as someone whose opinions and (vile, dangerous) views we should care about. She developed a talk show, thankfully aborted, for Oprah’s cable channel, then was in talks with Bravo, and as far as I can tell VH1 is set to begin airing her “Horrible Lies About Autism and Naughty Jokes Variety Hour” at some point later this year.
And the Huffington Post, for years the most prominent major “news” site on the Web to regularly promote vaccine conspiracies (and plenty of other fringe pseudo-science b*******), is still giving her a platform: Her last post on the subject of autism was published three scant months ago. (Her last post explicitly on the false “link” between autism and vaccines came in January 2011.)
HuffPo has otherwise improved its coverage (probably thanks to the professionalizing influence of AOL), with its slightly ridiculous science correspondent Cara Santa Maria presenting this interview with “Panic Virus” author Seth Mnookin under the unintentionally hilarious headline “Vaccines & Autism: Controversy Persists, But Why?” (In large part because of the website publishing this video, Cara.)
Meanwhile, in West Virginia, we come across the conservative version of the generally liberal vaccine/autism conspiracy. There, parents are begging the state Legislature to allow them to e... from vaccine requirements, because vaccines are apparently made out of aborted fetuses …?
“Fourteen of the vaccines required by the state of West Virginia contain aborted fetal tissue, of over 150 babies, and their cell lines are aging,” Lee told lawmakers. “That bothers me as a Christian, that I have to choose between my faith in God and sending my children to public or private school.”
Public health officials sought to address such concerns during the hearing. Dr. Raheel Khan, assistant professor of pediatrics at West Virginia University, explained how some vaccines have been cultivated in cells that were developed from cells taken from aborted fetuses more than 40 years ago.
“No pregnancies were intentionally terminated to produce these vaccines,” Khan said. “None of these vaccines contain any genetic material from the donor cells.”
How about that! It turns out that there is actually more of a grain of truth to the “vaccines are made out of abortions” line then there is to the “vaccines cause autism” story. Good work, conservatives.
Today’s good news is that the growing use of the HPV vaccine is leading to herd immunity, despite the best efforts of people like Michele Bachmann and Jenny McCarthy who want your children to get cancer and die.
Alex Pareene writes about politics for Salon and is the author of "The Rude Guide to Mitt." Email him at firstname.lastname@example.org and follow him on Twitter @pareene
via Disability Scoop by Michelle Diament on 7/11/12
Children with disabilities are four times more likely than typically developing kids to be victims of violence, according to a first-of-its-kind global analysis.
In a review of 20 years worth of data, researchers found that more than a quarter of children with disabilities have been exposed to some type of violence, be it physical, sexual, emotional abuse or neglect.
Their findings, published Thursday in the journal The Lancet, are based on an analysis of 17 studies conducted between 1990 and 2010 involving more than 18,000 kids in the United States, United Kingdom, Sweden, Finland, Spain and Israel.
The report indicates that 20 percent of kids with disabilities experienced physical violence while nearly 14 percent were exposed to sexual violence.
Youngsters with intellectual disabilities are particularly vulnerable — even as compared to other kids with disabilities — when it comes to sexual violence, the researchers found.
Despite the grim picture that the analysis offers, the report authors say that the situation could actually be worse than the data reflects. That’s because little information is available from many low and middle-income countries where disabilities and violence are often more prevalent while supports are less available.
“The results of this review prove that children with disabilities are disproportionately vulnerable to violence, and their needs have been neglected for far too long,” said Etienne Krug, director of the World Health Organization’s Department of Violence and Injury Prevention and Disability, which contributed to the study. “An agenda needs to be set for action.”
The high risk of victimization is not limited to children with disabilities, however. The research team behind the current report issued a similar analysis earlier this year looking at the experiences of adults with disabilities. They found that such individuals are one-and-a-half times more likely to be victims of physical or sexual attacks.
Disability Scoop by Shaun Heasley on 7/10/12
When a team of researchers honed in on a group of eight wildly-talented child prodigies, they found that autism may have something to do with the children's extraordinary abilities.
In a study published in the journal Intelligence this month, a research team from Yale University and Ohio State University report that autism appears to run in the family for many child prodigies.
For the study, the researchers hunted for commonalities among eight prodigies — those who displayed professional-level talents by the age of 10 in areas ranging from music to math. Though they are all famous, the study authors did not disclose the names of the whizzes they focused on, who ranged in age from 7 to 32 when they participated in the study.
Strikingly, three of the eight prodigies had an autism diagnosis themselves and four reported that they had first or second degree relatives with the disorder. What’s more, three of the prodigies had multiple family members with autism.
The study participants also all shared an unusually high affinity for attention to detail — a common trait of autism — when tested, but did not show higher levels of other characteristics of the disorder across the board, researchers found.
“The exceptional attention to detail combined with the over-representation of autism in the prodigies’ families suggests a link between prodigiousness and autism,” the researchers wrote. “The fact that the prodigies operate without many of the deficits commonly associated with the condition, however, suggests the presence of a modifier of some sort that prevents the child prodigies from displaying these deficits. The existence of such a modifier could have significant benefits for the autistic community.”