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GRASP Summer 2013 newsletter

It’s summer. A busy time, vacation time. Kids and teachers out of school. Record-breaking heat.Here at GRASP, we realize everyone is busy, and have combined our July and August newsletters into one summer issue. From the many articles in the media related to autism, we’ve selected just 14: “New” GRASP online group:      Families & Clinicians10 jargon phrases used for my      autistic sonFolding mat reveals motor      deficits in severe autismAutism Study Seeks Participants      at MIND InstituteAdam Schwartz uses humour to      explain Asperger's syndromeAutism challenge growing in      Black communityAutistic man breaks through the      silence\Researchers Identify Possible      Cause Of 1 In 4 Autism CasesThe Ruling That Could Change      Everything for Disabled People with Million-Dollar TrustsAsperger's, PDD patients impaired in recognizing fearful facesAsperger's and IT: Why my      prejudices are greatAutism no obstacle to baseball      dreams·       Autism at work - Wanted: inflexible non-team player·       FX's new show, "The Bridge," portrays a character with autism is discussed in 2 articles: Finally, a realistic autistic character on television from Salon and 'The Bridge': Diane Kruger on Asperger's and Female TV Roles from Hollywood Reporter. Yvona FastOnline Networks & Support Groups ManagerGRASPThe Global and Regional Asperger Syndrome Partnership, Inc.419 Lafayette StreetNew York, NY 10003p + f = 1.888.474.7277 (1.888.47.GRASP)info@grasp.orgwww.grasp.org Help GRASP make a difference. Donate now by clicking the link below:http://www.nycharities.org/donate/charitydonate.asp?ID=2223   GRASP re-instates Families and Clinicians online group We have decided to re-instate the Families and Clinicians online group. You can sign up on the GRASP website. The group is a discussion forum for family members of folks on the autism spectrum, as well as their clinicians and therapists. 10 jargon phrases used for my autistic sonBy Mark Neary , Guest bloggerThe adult social care world is about many things, but one thing that I feel it's not about is care. The language seems to mislead you right from the start. Processes seem to come before people in a system of impenetrable management where money is the biggest consideration.Day centres are closed down. Although you may have considered them a helpful lifeline, this closure is not a negative thing because it's been done to promote independence.Service user choice is also a fabulous phrase until you find it results in being given a sum of money to purchase your own care provider but no one provides care at those rates which are calculated for you by a fairer charging policy. Which also sounds good but isn't.Steven was transitioned into adult services six years ago. Soon after, he was taken into a care unit against all our wishes which resulted in a well-documented court case (Autistic man unlawfully detained, June 2011).One of the unit's ideas was that he should have a person-centred plan. He had to create a wish list, and came up with six things:Live      at home with DadGo      on holiday to SomersetHave      Christmas presents at homeSee      Toy Story 3 at the cinemaHave      breakfast in the bacon shopGo      swimming at Hampton open-air poolAll six wishes were refused because they were not considered to be in his best interests. To me, that's not a person-centred plan, that's a system-centred plan.A service user, like Steven, is a case and every piece of minutiae from his life must be recorded and analysed. For two years I had to keep logs of everything my son did. I still have 565 sheets of paper, all saying: "Steven had pears, grapes, bananas and oranges for breakfast." For 126 consecutive Mondays, a support worker recorded "Steven watched a Mr Bean DVD with his father."I was never once asked to hand over the logs I'd written.One manager explained to me once that everything learning disabled people do must have a value - not too bad until you realise that someone else is setting the value and its parameters are very narrow. Who on high decreed that everything we do must have some value?I write a lot about the language of the social care world. I love it when I read stuff like transparency because the reality seems to be the opposite. I therefore tend to work on the principle that the opposite of what is being presented is probably closer to the reality.But the thing that really gets my goat is when a person's entire life, everything they do, is jargonised.I was recently comparing with a friend the way I present the everyday norms of my own life with the way the social care world presents Steven's life. We were having the conversation in a pub. If Steven were to go to that pub, or to a gym or swimming pool, for instance, he might be described as accessing the community.Here are 10 jargon phrases I jotted down on the back of a beer mat, the kind of things which make Steven's life sound even less "normal":1. I live in my home. Steven's current placement is in the family home.2. When I make a pizza, I'm making a pizza. When Steven makes a pizza, he's increasing his independence skills (as overseen by an occupational therapist).3. If I cry, I'm sad about something. If Steven cries, it is logged and analysed by the psychologist and positive behaviour team.4. If I shout or swear, I'm angry about something. If Steven shouts or swears, it is challenging behaviour and new behaviour management plans need to be drawn up.5. If I choose between steak or fish for my tea, I'm making a choice. If Steven chooses either steak or fish for his tea, he is being empowered.6. I have friends. Steven has a circle of support and influence.7. If I'm asked what I want to do with my free time, I'm planning my hobbies. If Steven is asked what he wants to do with his free time, it's his person-centred plan.8. If I make an unwise choice, I've messed up. If Steven makes an unwise choice he may be lacking mental capacity.9. If I sort my CDs into alphabetical order, I'm being a bit anal. If Steven sorts his Mr Bean DVDs into colour order, he is being inappropriately obsessive.10. If I eat two Mars bars, I'm being a pig. If Steven eats two Mars bars, he is challenging boundaries.http://www.bbc.co.uk/news/blogs-ouch-23423541Folding mat reveals motor deficits in severe autismPopularity trackerJessica Wright 24 July 2013 Using a portable mat embedded with pressure sensors, researchers have shown that adults with severe autism walk more slowly than controls do. The results were published 20 May in Frontiers in Integrative Neuroscience1. Motor deficits are not considered to be a core feature of autism. However, most people with autism have motor problems ranging from toe-walking to clumsiness and poor handwriting.  One way to assess motor function is to study gait — the positioning of feet and legs while walking. Because this involves motion-capture wires placed on the participant’s legs, however, most studies have focused on high-functioning individuals with autism. In the new study, the researchers made use of a GAITRite walking system, a foldable 6-meter-long mat embedded with sensors. The sensors detect the placement of the ball of the foot and heel, and the angle of each foot, and relay the information to a computer that can infer stride placement and length2. The researchers assessed nine adults with autism, all of whom have severe communication deficits. Still, the adults had no difficulty following directions and walking the length of the mat, which they each did six times. Compared with ten controls, the participants with autism walked more slowly, took shorter steps, and spent more time transitioning between steps. They also placed their left foot on the mat so that it pointed outward, instead facing forward, the study found. The gait problems seen in the participants with autism are more severe than those described for high-functioning individuals in previous studies, the researchers say. This suggests that motor deficits are a core component of the disorder, they say, and not just a co-occurring symptom. News and Opinion articles on SFARI.org are editorially independent of the Simons Foundation. References: 1: Weiss M.J. et al. Front. Integr. Neurosci. 7, 33 (2013) PubMed 2: Menz H.B. et al. Gait Posture 20, 20-25 (2004) PubMed http://sfari.org/news-and-opinion/toolbox/2013/folding-mat-reveals-motor-deficits-in-severe-autism Autism Study Seeks Participants at MIND InstitutePosted: Sunday, July 21, 2013 | UC Davis (SACRAMENTO, Calif.) - Researchers at the UC Davis MIND Institute are seeking adolescents to participate in a groundbreaking brain imaging study aimed at understanding one of the most critical aspects of autism spectrum disorders: how people with autism generalize things they learn to new contexts. "One of the areas affected in many kids and adults with autism is their ability to learn in conventional settings. We believe this is because they have unique strengths and motivation patterns, which they use to tackle challenges," said Marjorie Solomon, associate professor of clinical psychiatry and principal investigator for the research. "We are trying to better isolate the kinds of strengths and challenges that people with autism spectrum disorders (ASDs) have with respect to learning," she said. "We want to understand better the neurobiology of those strengths and challenges so that we can help them maximize their full potential in life." Solomon said that many of the behavioral treatments used with children with ASDs, such as applied behavioral analysis, depend upon learning. However, no one really knows how the brains of children with autism spectrum disorders function during learning tasks. "It's ironic that one of our major therapies never has been examined in this way," Solomon said. Solomon and her colleagues will use behavioral evaluations and brain scans to study what neuroscientists call 'cognitive control' and 'reward processing' to examine how people with autism learn. Cognitive control refers to a person's ability to flexibly process information and change actions depending on internal goals. It allows a person to read the word 'green' out loud even if the word is printed in red. Cognitive control is important in a variety of aspects of learning, including planning, problem solving and multitasking. "We're investigating why adolescents with ASD often show deficits in cognitive control and reward processing in laboratory tasks, and what brain regions are involved in these deficits," said Jonathan Beck, the study's coordinator. "We will use this information to understand the many strengths teens with ASD use to compensate in tasks that are difficult for them." To better understand the learning styles of people with autism, MIND Institute researchers will use computer-based behavioral testing. They then will use functional magnetic resonance imaging (fMRI) to pinpoint the areas activated in the brain while the participant completes a learning task. Participation in the study involves two visits to the UC Davis Health System campus, one to the MIND Institute and one to the UC Davis Imaging Research Center. During the visits, participants will fill out questionnaires, complete computer-based brainteasers and puzzles, and have their brains scanned using fMRI while completing a learning task. The fMRIs show researchers which parts of the brain are involved during the tasks. More than 100 children and adults with autism already are enrolled in the study. Additional enrollees are needed to reach the goal of recruiting 300 participants. The researchers are seeking participants between the ages of 12 and 17 who are typically developing or who have been diagnosed with ASD. Study participants will be compensated for their time, receive free assessments and will be given a digital file of their own brain scan. Solomon said typically developing individuals, as well as those with ASD, have something to gain from participating in the study."Some get the pleasure of knowing they are helping people with autism, and those with autism get free testing that may help us to better understand their unique gifts," she said. "We take the time to discuss their results and answer their questions. They also become associated with a system of care that specializes in helping people with autism. A lot of families like that." Individuals who are interested in participating in the study may contact Jonathan Beck at 916-500-4674 or solomonlab@ucdmc.ucdavis.edu. http://www.rocklintoday.com/news/templates/community_news.asp?articleid=11853&zoneid=4 Adam Schwartz uses humour to explain Asperger's syndrome By: Carolin Vesely  Posted: 07/18/2013 When Adam Schwartz was 12, his mother told him he was autistic. "At the time I was like, 'Sweet!'" he says. "So I tried my hand at painting, but that didn't take. Pottery didn't work out so well, either." Ba-dum-bum. Jokes aside, the 27-year-old Winnipegger does have a high-functioning form of autism called Asperger's syndrome. It's a developmental disorder that affects a person's ability to socialize and communicate effectively with others. "Aspies," as people with the condition often refer to themselves, might talk too loudly, or use pedantic speech. Their conversations can be long-winded and one-sided, and they tend to misunderstand the nuances of language and social norms, taking a sarcastic remark seriously, for example, or failing to grasp the concept of personal space. "I'm extremely blunt. I can't read body language or tonal language. And I used to perseverate a lot," Schwartz says over coffee at a West Broadway diner. People with Asperger's are very linear thinkers, he explains. So to cope in a world of "neurotypicals" (a term for non-Aspies), they "just follow the rules" -- without adjusting for new circumstances. "If I was told personal space was two feet, and a cute girl came up to me to kiss me, I'd probably step back two feet," he says. To say that the tall, dark Schwartz -- who has a master's degree in library and information sciences -- has found it difficult to fit at times throughout his life would be an understatement. The loneliness and alienation, he admits, led to bouts of suicidal depression. In an effort to hone his social skills -- especially where women were concerned -- he turned to the performing arts. After two years of failed acting classes, along with some voice and diction training, the would-be schoolteacher turned to standup comedy. "I've always been a class clown, probably to compensate because I was so different," says Schwartz, who has performed at open mic nights once or twice a week for the past five years. He was a finalist for the Free Press's Wackiest Comedian contest in 2011. "The comedy community was the first place I felt welcome since high school." Now, in a bid to promote awareness and understanding of Asperger's syndrome, and to offer humorous insight into the life of an Aspie, Schwartz is taking his act to the fringe festival. He performs at the Playhouse Studio (Venue 3) from July 18 to 27. Aspergers: A Tale of a Social Misfit is "about how I have trouble making friends and how I'm horrible with the ladies," he says, adding his comic monologue also contains a message of positivity and hope. Schwartz says he was in denial for years about having Asperger's. He often felt stuck between two worlds because while he felt ill-equipped to handle "regular society," his social skills were better than most Aspies, so he didn't really fit into that community either. Instead, he kept telling himself he just needed to try harder. "Every year I thought, 'This is the year I'm going to get a girlfriend and be popular,' and that if I just work really hard I can achieve anything," he recalls. "I was so delusional -- I actually thought I was going to make it to the NBA." Finally, he accepted his brain just works differently than most people's. "It's not worse, it's just different," he says. "I came to understand that I'm on a different wavelength than most people, and I'm probably always going to be a social misfit wherever I go. "Having Asperger's has caused a lot of depression, but at other times, I'm happy with who I am." carolin.vesely@freepress.mb.ca Republished from the Winnipeg Free Press print edition July 18, 2013 D5http://www.winnipegfreepress.com/breakingnews/outsider-observations-216116791.html Autism challenge growing in Black communityBy Brandon A. Perry Posted: Thursday, July 18, 2013Autism is simply not discussed enough in the African-American community.It could soon become a serious health challenge among minorities if more is not done to address it, experts say.“Less discussion about autism among African-Americans, or between African-Americans and health care providers, has led to misdiagnosis, a lack of treatment and a lack of services,” noted Martell Teasley, an associate professor in Florida State’s College of Social Work and one of the leading researchers of autism’s impact on minorities.Recent studies have shown that signs of autism, a developmental disorder that appears in the first three years of life and affects the brain’s normal development of social and communication skills, can become apparent as early as 6 to 12 months of age.Although rates of diagnosis for autism occur at the same rates in all racial groups, diagnosis for minority children often occurs later than in white children, delaying essential intervention and treatment.“On average, children are diagnosed with autism at 4 or 5 years of age, and children in the African-American community are typically diagnosed even much later than that,” said Amy Daniels, Ph.D, assistant director of public health research for Autism Speaks, a leading autism advocacy organization, which has raised more than $195 million in research funds since 1995.Fortunately, an increasing level of awareness is being raised by African-American celebrities who have children with autism.One of them, actress Tisha Campbell-Martin, visited Indianapolis this week for Indiana Black Expo’s Corporate Luncheon. Her son, Xen, was diagnosed with autism at 18-months. Like most parents, Campbell-Martin was caught off guard by the diagnosis and was at first in denial.“I kept screaming and screaming and screaming,” she said. “I kept asking why? Why him? Why us?”Turning pain into action, Campbell-Martin joined the fight to raise awareness about autism, working with other prominent individuals to secure passage of the 2011 Combating Autism Reauthorization Act, which provided $1 billion for research and treatment.Earlier this year she released the children’s book My Brother Doesn’t Want to Play, which describes how a boy copes with the reality of his older brother receiving more attention from their parents due to autism.Other celebrities in the African-American community who have children with autism include singer Toni Braxton, actress Holly Robinson-Peete and her husband Rodney and vocalist Shawn Stockman of the R&B group Boyz II Men.Braxton said she knew something was different about her younger son, Diezel, when he was 9 months old. He wasn’t developing like his older brother.Early diagnosis, she said, made a major difference in Diezel’s quality of life.“We have him in occupational therapy, speech therapy, and he’s in mainstream public school,” said Braxton, who is now a global ambassador for Autism Speaks. “He does have his special education therapies, but we are very, very lucky.”In an emotional interview with CNN, Stockman discussed the moment his son Micah was diagnosed with autism, although he began developing speech and behavioral abilities sooner than his twin brother Ty.“No one would ever think that something like autism could ever happen to their child,” Stockman said. “All you want for your child is for them to grow up and develop a life of their own, and to know that this may or may not happen for my son is hurtful.”According to a report released last month by the Centers for Disease Control and Prevention (CDC), 1-in-50 school children has autism, a sharp jump from the 1-in-88 ratio released in 2012.That same report shows that autism has become the fastest-growing serious developmental disorder in the United States. In 2008, for example, 1-in-88 children was diagnosed with autism by a doctor or other medical professional, a 78 percent increase over 2002. For boys, the ratio was 1-in-54.Along with earlier diagnosis, Teasley noted that another way to address autism is by increasing the affordability and availability of options such as brain scans that can provide appropriate, timely diagnosis of autism.“Not every child has access to this kind of medical evaluation, particularly those who are indigent and don’t have health care funding,” said Teasley.Stockman has also noticed that affordability is a serious obstacle for many families as they seek the appropriate treatment for their children. That is why celebrities such as Stockman and Robinson-Peete have launched non-profit organizations like Micah’s voice and the HollyRod Foundation, respectively, to raise funds to help families with the expensive day-to-day costs of caring for and educating a child with autism.“We have learned through our journey just how fortunate we were, having money,” Stockman said. “There’s no way a normal couple or a single mom can afford this.”Robinson-Peete, whose 15-year-old son RJ was diagnosed at age 3, has been spearheading efforts to encourage government officials to pass laws that prohibit insurance companies from refusing to pay for treatment needed by those with autism.“Our kids shouldn’t be out of luck simply because they have autism and not diabetes or cancer,” she said.© 2013 Indianapolis Recorder Newspaper.http://www.indianapolisrecorder.com/news/article_d386ec30-efb9-11e2-bd78-0019bb2963f4.html Autistic man breaks through the silenceJACKSON, Miss. -- The last word Watson Dollar spoke before autism erased his ability to do so was "lights."The chubby cheeked toddler lay in his father's arms as anesthesia, administered for an ear-tube surgery, dimmed his consciousness. Head lolling back, body going limp, Watson gazed at the fluorescent lamps above him, uttering the one-syllable noun.Then he closed his eyes and never spoke again. That was 20 years ago.In the two months between Halloween and Christmas of 1992, Watson had lost almost of all of his 150-word vocabulary along with an interest in the world.His parents initially failed to notice the change, chalking up the subtle signs to stubbornness or fatigue or the ever-changing nature of a developing child.By New Year's, though, the difference was both inescapable and worrisome.The smiling, inquisitive boy who'd sung and pranced around his house in Magee now sat sullen and withdrawn. He rarely spoke. Instead of saying "juice" or "outside," Watson met his needs by tugging the nearest adult to the refrigerator or the backdoor.Watson also stopped playing with his toys. He used to push little cars around the living room, making vroom-vroom sounds. Now he held the vehicles upside down and close to his face while silently fixating on the wheels he'd spin for hours with his tiny fingers.By the time his pediatrician discovered fluid in his ears and recommended tubes, Watson was a different child. His parents, Pam and Donald Dollar, hoped the surgery would return him to his previous state."He can't hear, that's why this is happening," Pam remembers the doctor saying. "As soon as we get those tubes in, everything will be fine."But the procedure changed nothing.The Dollars got the dreaded diagnosis on May 17, 1993 — 10 days after his second birthday — autism — and took immediate action.They bombarded Watson with therapy and enrolled him in Magnolia Speech School in Jackson. They enlisted the best doctors and attended the latest autism conferences. They did everything they could to loosen autism's grip, but it wouldn't let go.Pam and Donald eventually accepted reality: The disorder had permanently severed communication in their only child and, in doing so, isolated him from the world. Watson was lost, and he wasn't coming back.His own mother often wondered, "Is he even in there?"That question lingered two decades, until, on Nov. 11, 2011, Watson sent a postcard from the other side.----Watson awoke from sleep thirsty and plodded down the hall to the kitchen, where his mother had left a half-empty water bottle on the counter. He reached for it.Still awake and sitting nearby, Pam quickly snatched the bottle. She was sick and didn't want Watson to get her germs. He needed to get his own water instead.Because she doubted he'd understand a verbal explanation, Pam grabbed the bottle and drank all its contents.Watson became agitated and was headed toward a full-blown meltdown.So Pam tried something she'd never before attempted. She grabbed her iPad and pulled up its keyboard, then typed, "Mom is sick, when someone is sick they have germs, germs can make you …"Watson hesitated, then grabbed his mother's hand and slowly typed the last word of her sentence: "sick."Pam couldn't believe it. Watson not only understood, but he was able to respond — albeit slowly and while clutching her hand. Still, she wanted to see if he'd do it again."Mom's water had …" she typed."Germs," Watson finished."Mom doesn't want Watson to get sick. OK?" she wrote."OK," Watson replied.A simple exchange by all accounts, but for Pam it was a breakthrough. This was the first conversation she'd ever had with her now full-grown son and the first tangible evidence that he was, indeed, "in there."She decided to press her luck."Is there anything else you want to tell me?" she asked out loud.Watson grabbed her hand and typed the words she'd been waiting to hear his whole life: "I love you, Mom. Very much."And with that, Watson cracked a door between two worlds long ago severed by autism. That door would open again and again in the months that followed, each time revealing more of the young man who'd been trapped behind it for years.Watson, it turns out, has been watching us all along.His mind has cataloged a lifetime of memories that he now recalls for his mother and a few others with whom he's comfortable enough to type. He remembers the way his preschool teachers physically restrained him and said he hated that school because of it."It was abuse," he typed.He remembers wanting to console his second-grade classmate after her father had died, but he didn't know how. He felt sad and helpless. It still haunts him to this day.He can name the kids who were mean to him in school, as well as those who showed him kindness.He's also capable of complex thoughts and is keenly aware of his disorder, as evidenced by this Dec. 13, 2011, conversation between him and his mother.Pam: "Do you understand autism?"Watson: "Yes, I live with it."Pam: "Yes, you do. You understand it better than anyone. Do you like autism?"Watson: "No, it is hard to deal with. I wish I did not have it."Pam: "I know. Me too. It has to be very hard for you."Watson: "(I) try to really deal with my weird stuff, but it's hard because so many things to deal with."Pam: "So what are the hardest things to deal with?"Watson: "Sounds (are) too loud, and (I) can't tell you things, like, God, I pray to get better."Pam: "You are getting better, every day. We can talk like we are now, and we weren't able to do that until a month ago."Watson: "For a long time I wanted to talk to you, and now I can. That is great."Pam" Yes, it's wonderful. I've wanted to talk to you for years, too. And now we can, so that means you're getting better."Watson: "Really glad."Pam: "Me, too. Is there anything you think people need to know about autism?"Watson: "For people (to) try to understand more. Then they will be nicer to people with autism.Pam: "Do you remember when you got autism?"Watson: "Yes, it was when I was 4."Pam: "No, it was when you were 2."Watson: "I don't remember that."Pam: "You were talking and were very socially outgoing, and then you changed. Something happened, but we still don't know what."Watson: "Really? What happened to me?"Pam: "We still don't know."----watch the video: http://www.usatoday.com/story/news/nation/2013/07/14/autistic-man-breaks-through-the-silence/2516527/Thursday, Jul 11, 2013 01:39 PM EDTResearchers Identify Possible Cause Of 1 In 4 Autism CasesBy Michelle Diament July 11, 2013 Disability ScoopNearly a quarter of autism cases could be due to antibodies found in the mother’s blood during pregnancy that interfere with fetal brain development, researchers say.In a study published this week in the journal Translational Psychiatry, researchers report that certain antibodies found almost exclusively in women with children who have autism may be affecting brain development during pregnancy.The problematic antibodies could account for as many as 23 percent of all cases of the developmental disorder, the study found.“These findings are incredibly important because they establish a cause for a significant portion of autism cases, thereby opening up new lines of inquiry into possible biological treatments,” said Leonard Abbeduto, director of the University of California, Davis MIND Institute where the research was conducted.Typically, maternal antibodies enter the placenta to help ward off bacteria and other viruses. But in some cases, instead of extending immunity to the child, these antibodies become what are known as autoantibodies and attack healthy tissue.For the study, researchers looked at blood samples from 246 mothers of children with autism and 149 mothers of children without the developmental disorder. They found that nearly 1 in 4 moms with a child on the spectrum had certain combinations of antibodies that target fetal brain proteins. The antibodies were found in less than 1 percent of mothers in the control group.The finding could lead to a diagnostic test that could be given to mothers if they have a young child suspected of having autism, researchers said, allowing children to enter early intervention.Such a test might also be used to assess a woman’s chance of having a kid with autism prior to becoming pregnant, they indicated.“It is important to note that women have no control over whether or not they develop these autoantibodies, much like any other autoimmune disorder,” said Judy Van de Water, a researcher at the MIND Institute who led the study. “And, like other autoimmune disorders, we do not know what the initial trigger is that leads to their production.”In a separate study that was published in the same journal, researchers injected pregnant monkeys with the antibodies spotted in many mothers of kids with autism and found that the exposure negatively affectedhttp://feedly.com/k/1dlYuvX The Ruling That Could Change Everything For Disabled People With Million-Dollar TrustsA pissed-off judge, a $3 million inheritance, and a neglected autistic manBy Katia Savchuk Wednesday, Jul 10 2013 When Judge Kristen Booth Glen walked into her Manhattan Surrogate's courtroom one day in 2007, she had no idea she was about to challenge the nation's top banks on behalf of tens of thousands of disabled people.Before her stood lawyer Harvey J. Platt, who was petitioning to become the legal guardian of Mark Christopher Holman, a severely autistic teen who lived in an institution upstate.Holman had been left an orphan nearly three years earlier after the eccentric millionaire who adopted him passed away. According to doctors, he had the communication skills of a toddler, unable to bathe, dress, or eat by himself.But before Judge Glen would grant this seemingly perfunctory petition, she had a few questions for Platt."How often have you visited Mark Holman?" she asked the lawyer."Since his mother died, I have not visited him," said Platt."And when you say you haven't visited him since then, how often had you visited him prior to that?""I haven't seen him since he was eight or nine," responded the lawyer. "His mother used to bring him to our office with his brother, just to show him my face and so forth and so on, so I haven't seen him probably since 1995 or 1996."It was around that time that Platt helped Mark's mother, Marie Holman, draft her will and create trusts for him and his older brother. A decade later, when she was dying, Platt promised Marie he'd apply to become Mark's guardian."And have you visited the institution which he currently resides in?" Glen asked."No, I intend to, but I have not as yet," Platt said, sounding weary. "I don't think even a visit has much significance anyway. He's totally nonverbal—he's never spoken a word. He's potentially aggressive."This didn't sit well with Judge Glen. When it came to signing away the rights of disabled people to guardians, she was perhaps the most cautious judge in New York. But what came next would floor her.Platt informed her that Mark's trust had reached nearly $3 million. But while his trustees—Platt and JP Morgan Chase—had collected thousands of dollars in commissions, they hadn't spent a penny on Mark. Medicaid covered his basic care at the institution upstate, but neither the lawyer nor the bank had considered how his mammoth trust might further aid his quality of life."Whether there is a cure for his autism or not, the question is: Are there things that could make his life more pleasurable or fulfilling?" Glen asked. "If somebody took him out to the movies once a week, or somebody took him out to lunch, or what he really likes to do is watch football—I don't know. There's always something that could make people happier, and I don't think you could know that without really visiting him and knowing what's going on."As she spoke, Glen could not have predicted that the case would become a five-year obsession for her. Or that she was about to disrupt a lucrative trade in which some trustees sponge commissions off wealthy disabled people—while doing little to enhance their care."They're lazy pieces of shit," says Glen. "It's a business. They collect their commissions, and they think their only responsibility is to invest the money and keep the money safe with no regard for the beneficiary."Special-needs trusts hold billions of dollars around the country. The funds are set up to benefit people with chronic disabilities, while typically allowing them to keep government benefits like Medicaid. But there's little oversight to ensure that trustees are spending the money properly—or even spending it at all."We see a lot of trusts that sit dormant," says Edward Wilcenski, a New York lawyer and former president of the Special Needs Alliance, a national network of attorneys. "It's not uncommon that over a period of three, five, 10 years we don't see distributions made, but we see the calculation of commissions."The trusts number in the tens of thousands and are held by a long list of banks. Wells Fargo, for example, has more than 1,000 trusts with a total value of more than $1 billion. And as more people with disabilities live longer, their value continues to grow.They're usually funded with an inheritance or court settlement. But in order for beneficiaries to stay Medicaid-eligible in New York, trustees must have absolute discretion over their money.The problem: There are virtually no rules governing whether trustees are spending in the best interests of their clients. Worse, the courts can only review these cases if someone complains."If someone is severely disabled with an institutional trustee, that person's not going to come to court," Glen says. "There's nobody who will, and that's what's really scary about it."Marie Holman, Mark's adoptive mother, grew up on a muddy dairy farm in Jefferson, Ohio. The family was poor, even by Great Depression standards, recalls niece Sharon Awad. Marie and 11 siblings shared a farmhouse without plumbing.Marie looks tall and thin in family photos, with sunny blond hair and a cute bulb nose. She kept her fingernails long and red, even while she helped milk the cows. During World War II, she managed to get a job as a general's secretary. Afterward, she ran off to Hollywood with her younger sister Betty to become an actress. When that didn't work out, Marie moved to New York, got a nose job, and became a professional dancer and runway model. She lied about her age and stayed on the catwalk until she was 40, long after most models age out. She fell in love with a wealthy Jewish businessman named Charles Holman. Marie never told her Catholic parents about the marriage. Even Betty Brooks, Awad's mother, didn't quite know what her sister's husband did, except that he did it well. When Marie came back to Ohio for weddings and funerals, she looked as if she'd gotten lost on the way to a gallery opening. In family photos, she stood a head taller and several sizes slimmer than the other women, one foot pointed in front of the other as if posing for a photo shoot. She wore her platinum-blond hair in a poofy bun and layered on thick mascara. She always wore black. Soon after she married, Marie had a miscarriage, then discovered she couldn't bear children. Sorrow hung over the couple. Marie found satisfaction in work, putting herself through secretarial school and working her way up to office manager in a prominent investment bank. Her boss took her under his wing, and she learned to invest when it was something women didn't do. She made her own fortune betting on stocks like Johnson & Johnson. In the late 1980s, when Charles was dying, he told Marie that he didn't want her to be alone, that she should finally have the child she always wanted. Marie went to an adoption agency soon after he died. She told them she was 47, by then a rather wild claim. When they said no, Marie decided on an under-the-table adoption. Faking her age again, she found a lawyer who would broker a deal: $15,000 plus hospital bills in exchange for a poor woman's newborn. In the end, the woman took the money and ran. Marie was heartbroken. But she didn't give up. The lawyer found another poor couple burdened with drug addiction and too many children. This time she got a little boy, whom she named Charles. Marie was 66. She raised the child in her rent- controlled Upper West Side apartment, decorated floor to ceiling in lavender. She could afford much better, but she was raised with frugality. She wouldn't replace a holey shag rug until she tripped on it. A year later, Marie got a call from the lawyer. Charles's birth mother was pregnant again. Did Marie want a brother for her son? Mark was a good-looking boy with olive skin, dark hair, and a big smile. He looked Greek or Italian, but he was born with an enlarged head. Marie knew he'd have challenges. She took him home when he was five days old. Though a nanny changed and bathed him, Marie spent all of her free time with Mark, taking him to the park or doing exercises to improve his memory and communication skills. The boy was diagnosed with autism when he was seven. Doctors later discovered a seizure disorder, and that Mark was missing part of his brain. Marie took him to countless specialists and spent lavishly on treatment. Mark wouldn't learn to speak, but he pointed and made sounds to let Marie know he was hungry or wanted something. When she smiled, he smiled back. "I know he understands me," she would say. When Mark was around nine, his mother sent him to an expensive special needs school. She fought to have the government pay the costs and won, according to Awad. When Mark traveled on the school bus alone, Marie gushed with pride. She didn't like to think about old age and death. But when Marie was in her 70s, her sister convinced her to face facts. Mark was only seven. What would happen to him as an orphan? In 1995, Marie went to a talk on estate planning at a Manhattan hotel. The speaker was Harvey Platt, an estate lawyer who had written several books on trusts. Then in his 60s, Platt co-chaired a trust for the New York State Association for Retarded Children, the nation's largest nonprofit supporting people with intellectual disabilities. "The selection of the trustee can be in many instances the most difficult part of creating a trust," Platt wrote in Your Living Trust and Estate Plan, now in its fourth edition. "The trustee must not only be willing and able, but must be familiar with the beneficiary and his or her needs." Marie approached Platt after the lecture. His face was framed by thick, oval glasses, and he had the manner of an old-fashioned family attorney. Platt agreed to help Marie create trusts for Mark and Charles. When she died, her sister would become Mark's guardian, with Platt as a backup. Income from Mark's trust was to be spent on his "care, comfort, support and maintenance." Marie also authorized them to give money to "any facility he may be residing in and/or to any organization where he may be a client or a participant in any program(s)." And if Marie and Brooks both died, Platt and JP Morgan Chase would take over as trustees. Marie's health would take a turn for the worse. In 2000, she tripped on ice and hurt her back. She never walked again. Soon after, Brooks convinced Marie to move to a bigger place. She bought a corner condo in Trump Place. She placed a red leather sofa in the living room. Above it, she hung a painting of herself in a black evening gown, her trademark bun high on her head.In 2003, Marie was diagnosed with terminal cancer. Unable to care for Mark, then 14, she placed him in the Anderson Center for Autism in upstate New York. The nonprofit institution, which had been around for nearly 80 years, provided housing, schooling, and life-skills training. Within two years, Marie was in the hospital. She was 85, and her trademark bun had grown disheveled. Streaks of mascara gave her raccoon eyes. She died in 2005 in the Florence Nightingale Health Center in Harlem, almost 10 years to the day after signing her will. Her estate was worth $12 million. Since Brooks had died the year before, Platt and JP Morgan took over Mark's trust. The next year, fulfilling what he called a "deathbed" promise to Marie, Platt petitioned to become Mark's legal guardian. The petition didn't find a warm reception in Judge Glen's courtroom. When she heard that Platt hadn't visited Mark, inquired about his needs, or spent any money on him, she adjourned the hearing. She then summoned JP Morgan to court to hear the bank's side of the story. In October 2008—during the heart of the banking crisis—a JP Morgan representative appeared before the judge. Why hadn't the bank inquired about Mark's needs or spent the trust funds on him? Glen asked. "We're a bank," Glen remembers the representative responding sheepishly. "What are we supposed to do? We don't know anything about people with intellectual disabilities and what they need." (JP Morgan declined comment on the case.) "You hire people to manage people's money," the judge replied. "Hire people to find out what they need." Glen ordered Platt and JP Morgan to visit Mark, meet with his caregivers, and figure out how the trust could be used to fulfill his needs—or hire a professional to make recommendations. Families are often urged to hire banks to safeguard their children's trusts. A few institutions, including Wells Fargo and Merrill Lynch, have specially trained officers. But many have little expertise in actually helping the disabled. That leaves people like Mark to slide under the radar of trust officers handling hundreds of funds, says Mark Haranzo, a partner at the New York law firm Withers Bergman. "The squeaky wheels are getting the attention and the silent ones are ignored," he says. "Someone makes a judgment based on their own personal value system about whether someone needs something, and they never bother consulting a professional who understands quality of care and the bigger picture," says Ann Koerner, president of National Care Advisors. "If the trustee's not consulting with family or social workers or case managers or advocates for the client, they're probably not going to be making the best decision." In some cases, Koerner suspects, banks pay out less than they should because commissions are based on the value of the trust. Big financial institutions may also not have the structure in place to pay for small, daily expenses. "JP Morgan probably does a very good job in terms of being a responsible steward and investing, but it would probably be difficult for them to give that type of attention to think about ordering clothes for someone, paying a cable bill, getting a computer for them," says Kelly McDonald of Secured Futures Trust, a Phoenix, Arizona, nonprofit. Ideally, the guardian and trustee serve as checks on each other. But in Mark's case, they were one and the same. The Anderson Center for Autism sits on a sprawling, wooded campus near the Hudson River in Staatsburg, New York. Mark had lived there for five years by the time Robin Staver, a professional care manager the trustees hired, visited him two months after JP Morgan and Platt appeared in court. Mark, who was 20, wore earmuffs to block noises that to him seemed painfully loud. He had dark, almond-shaped eyes, a delicate nose, and pouty lips that opened into a bright smile. Staver had been a care manager for older adults and disabled people for two decades. Before she came to assess Mark's needs, no one had visited him at the school since before his mother died, and he'd never left the institution. When most residents went home for Christmas, Mark stayed behind. Anderson had no idea the young man was the beneficiary of a multimillion-dollar trust. Mark needed help with basic tasks, like brushing his teeth and getting dressed. He didn't speak, but he seemed to respond to questions by using picture symbols and gestures. Mark's medication may have actually made him worse, Staver discovered. Keppra, his anti-seizure medicine, has side effects that increase aggression. Mark would often spit, throw things, or hit himself, and had to be closely monitored. There was a time-released version of the medication with fewer side effects, but it wasn't covered by Medicaid. The trustees agreed to pay for some of the items Staver recommended, including a computer, headphones, clothing, and gift certificates for restaurants. They also hired Staver to assess Mark four times a year. In June 2009, Glen was finally ready to appoint Platt as Mark's guardian, but with strings attached: He would have to report to the court every year. New York's guardianship law for intellectually disabled people, known as Article 17-A, is one of the nation's few that doesn't require periodic judicial review. "If a guardian was appointed 15 years ago, we have no idea whether the kid's dead, alive, tied to a mattress in their own crap," Glen says. Mark, Glen wrote in her opinion, could have remained completely isolated in an institution without his resources being spent to help him reach his potential. From now on, she decreed, all guardians appointed in Manhattan would have to report annually. Glen didn't stop there. She wondered how many Marks were out there, and how many trustees were getting away with not spending money on them. By chance, another special-needs case had come across her docket that year. A severely disabled woman had a large fund managed by a corporate trustee. It seemed no one had evaluated her for years, so Glen sent a guardian ad litem to visit her. She lived very comfortably, with a full-time caretaker and chauffeur. But Glen found out that the woman never went outside because she couldn't hold her head up. The trustee never visited her and had no idea she needed a wheelchair that could support her head, or that such a wheelchair existed. "They were spending a lot of money, but they weren't spending money in a smart way," Glen says. That same year, Glen ordered Mark's trustees to open their books. In 2010, Mark moved into his own room at the Anderson Center. During the day, he exercised and worked on communication and vocational skills, like sorting and packaging. He didn't do well with change, and at first he hit staff and himself. But soon, Staver noticed improvements. Mark had made "significant progress" using pictures to convey words, sentences, and questions. For the first time, he could dress himself, eat with regular utensils, and drink from a cup. He was still aggressive, but he was also playing outside with a ball, watching videos, and eating at restaurants accompanied by caregivers. "He smiles and will reciprocate gestures such as high fives or handshakes," Staver wrote. (She declined comment on this story due to a confidentiality agreement.) A year later, Mark no longer needed a safety harness to restrain him during van rides. He could now brush his teeth without help, take laundry in and out of the washing machine, put his plate in the dishwasher, and review his daily schedule. He was using a trampoline, reclining bike, and Nintendo Wii the trustees had bought him, and his Xbox helped him interact with others. He left the facility to eat in restaurants, go bowling, get haircuts, and shop. Staff began planning a vacation to Disney World or the Autism on the Seas cruise. By 2012, Mark was showering independently. He liked dressing up before eating out and buying a drink for himself after walking a trail. Using new communication devices, he chose the foods he wanted for dinner. For the first time, he could use sign language to say "apple" and "cracker." One day, as Staver left Mark's classroom, she waved and said, "Bye!" Mark had never spoken in his life, so she expected no reply. But this time she didn't hear gurgles or inscrutable sounds. Instead, she heard him utter his first word: "Buh!" In late 2012, as Glen neared mandatory retirement at age 70, she decided to follow up on Mark's case. She discovered that it had been two years since the trustees filed documents showing how they'd managed Mark's trust. The trust was now worth $3.6 million. In the five years after Marie's death, Platt earned more than $26,000 in commissions, and JP Morgan received more than $52,000. But through March 2010, they had only spent $3,525 on Mark after Glen intervened. In December, on her last day as a judge, Glen wrote her final chapter in Mark's case, which had implications that would reach far beyond him. She ruled for the first time that banks and other trustees have to figure out what disabled people need and spend money to improve their lives. Like many of her opinions, this one was unusually detailed, reading more like a novella than a court record. "The history reveals a severely disabled, vulnerable, institutionalized young man, wholly dependent on Medicaid, unvisited and virtually abandoned, despite a multi-million dollar trust left for his care by his deceased mother," she began. According to Glen, in the four years since trustees hired Staver and attended to Mark's needs, the intervention "has dramatically improved the beneficiary's quality of life and his functional capacity to enjoy what is now a near 'normal' existence in the community. "It is not sufficient for the trustees to simply safeguard the Mark Trust's assets; instead, the trustees have a duty to Mark to inquire into his condition and to apply trust income to improving it." This wasn't just about Mark: It was a "clarion call" for all special-needs trustees, she wrote. "Courts will intervene not only when the trustee behaves recklessly, but also when the trustee fails to exercise judgment altogether." Glen's decision sent ripples through the banking industry and disability rights community. "There's a lot of discussion going on in the banks about what to do," says Glen, who hopes they will now educate trust officers or contract outside professionals. "They're now being called to task. If you don't know anything about it, hire somebody or don't take the job." Glen's decision doesn't fix gaps in oversight, but it gives advocates and judges around the country something to point to when assessing what trustees must do. "It's not going to be pretty, because it creates an affirmative obligation on [banks] to actually do something," says Bernard Krooks, who chairs the special-needs practice at the law firm Littman Krooks. "Typically, they just invest the money and try to obtain a decent return." In her opinion, Glen demanded that JP Morgan and Platt provide an updated accounting of Mark's trust. She also recommended that both have their commissions denied or reduced. "This is very upsetting to me," Platt says. Now 81, he sounds exhausted when he speaks of Mark's case from his Upper East Side office. "I never gave her any reason to have such a harsh opinion," he says. "It's not pleasant, especially with the career that I've had, and I'm going to make sure that I continue to do what I'm doing. I will never, ever let anyone criticize me." His delays in visiting Mark and filing paperwork were largely due to health problems, he says. Platt cared for his ill daughter, who died in 2007, and his wife, who was sick for seven years before she died in 2012. He, in turn, has been treated for leukemia and prostate cancer. "I don't disagree with [Glen] that more trustees should become more proactive in what they're spending, but I think the forum is wrong," Platt says. "All she's doing is requiring legal fees to be paid, and I think that she's gone too far." In two affidavits Platt filed earlier this year, he said that Glen and Staver took undue credit for improving Mark's condition. "While Ward's improvement or progress was and is 'heartwarming' and a miracle, according to the staff at Anderson, this was based upon Ward's maturing through adolescence rather than any changes in 'medical' treatment," he wrote. "While we credit Judge Glen for her concern and causing the appointment of a social worker, the facts show Ward's improvement was caused by a higher power." In addition, Platt argued, "If there be fault in the delayed reevaluation and possible changed treatment, it must be shared by society." In other words, Anderson or even the court may have been at fault for insufficient treatment prior to his appointment as guardian. Nearly five months into her retirement, Glen sits at the neighborhood diner where she orders "the usual": bacon, scrambled eggs, and sliced tomatoes. She's now a professor at the City University of New York School of Law, where she was once dean, and has spent the last few months speaking about Mark's case and others at events around the country. She dismisses the idea that Mark improved simply because he grew older. "Had he not gotten these interventions, he would not be in that situation. "When you think about an institution that gets the shit payments they get from Medicaid, they do their best," she says. "But they can't do one-on-one. They can't carefully teach somebody to use a communicative device. They can't take people out to restaurants. The more somebody interacts with the community, the more they're allowed to exercise their choice, the more they learn how to make decisions." http://www.villagevoice.com/2013-07-10/news/disabled-inheritance/ Asperger's, PDD patients impaired in recognizing fearful faces By: DENISE NAPOLI, Clinical Psychiatry News Digital Network Patients with Asperger’s disorder and pervasive developmental disorder are less able to recognize fearful facial expressions compared with controls, a recently published study shows.Moreover, the deficit is linked to worse social dysfunction in these patients, reported Shota Uono, Ph.D., and his colleagues in the journal Research in Autism Spectrum Disorders.Dr. Uono of Kyoto (Japan) University and his colleagues looked at 54 Japanese patients: 18 "typically developing" controls, 18 with Asperger’s disorder, and 18 with pervasive developmental disorder–not otherwise specified (PDD-NOS) (Res. Autism Spectr. Disord. 2013;7:361-8).Patients with Asperger’s and PDD-NOS were diagnosed at the time of the study, using the DSM-IV-TR, based on extensive patient interviews, and data collected from patients’ families and teachers.PDD-NOS patients were those who did not satisfy the criteria for Asperger’s in that "they had similar impairments in qualitative social interaction in the absence of apparently restricted interests and stereotyped behaviors, or their impairments in qualitative social interaction were milder than those observed in individuals with Asperger’s," wrote the authors.The mean age in each group was about 19 years old, and patients were matched with controls according to age and sex.The researchers then showed the participants 48 photographs of facial expressions depicting anger, disgust, fear, happiness, sadness, and surprise. In half of the images, the models depicting the emotions were Japanese; the other half was white.The investigators found that the Asperger’s and PDD-NOS patients both performed significantly worse than did controls at correctly identifying fearful faces.Additionally, the recognition accuracy of the PDD-NOS group was worse than both the controls and the Asperger’s group in response to disgusted facial expressions.Next, the researchers looked at the relationship between poor facial recognition of these two emotions and social dysfunction, as assessed on several measures of the Childhood Autism Rating Scale (CARS): imitation, nonverbal communication, relationship to people, verbal communication, and visual response.Here, Dr. Uono and his colleagues found that the correlation between fearful expression recognition and social dysfunction was significant in both the Asperger’s and PDD-NOS groups, "indicating that individuals with Asperger’s and those with PDD-NOS who demonstrated worse recognition of fearful expressions had more severe symptoms in social domains."The correlation between disgusted expression and social dysfunction, on the other hand, was not significant in either group.In offering an explanation for the findings, the researchers pointed to studies showing that difficulties with fearful face recognition have been linked to dysfunction in the amygdala, "which is involved in various social behaviors."They also highlighted another potential target: the basal ganglia."It has been reported that individuals with Parkinson’s disease and Huntington’s disease show a specific impairment in disgusted-face recognition," they wrote."It is possible that the impairment in disgusted-face recognition in PDD-NOS reflects the existence of more severe motor deficits and functional abnormalities in the basal ganglia than are present in other PDD subtypes."No matter the mechanism, "Additional research is needed to explore the relationship between this impairment and the clinical manifestations specific to PDD-NOS," they concluded. "These data may prove helpful in attempts at disambiguating specific problems associated with PDD-NOS."http://www.clinicalpsychiatrynews.com/news/adult-psychiatry/single-article/asperger-s-pdd-patients-impaired-in-recognizing-fearful-faces/37ee605048aae4a1089212708aa15c7b.html Asperger's and IT: Why my prejudices are greatLike Trevor, I have a disability. I live every day with Asperger's Syndrome.The problem with Asperger’s is that those with it display (to quote Wikipedia) "intense preoccupation with a narrow subject, one-sided verbosity, restricted prosody, and physical clumsiness … as well as a lack of functional empathy”.To explain, I’m a living breathing walking encyclopedia on a few, narrow and extremely limited topics. If I care about something, I care about it to the point of minutiae. If I don’t care, then as far as I'm concerned it may as well not even exist.On a professional level this might seem to be a massive boon, but as a result of my lack of functional empathy it is like juggling chainsaws over a pit filled with crocodiles while it rains acid. Every day I force myself into situations that I’m not cut out to deal with socially.One of the reasons that I am so damned good at what I do in IT is that computers don’t talk. They don’t expect me to know that they have three kids, two in high school and one in primary, or to remember to ask about them during my weekly, fortnightly or mon

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