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Special Needs Research and News

Gainesville Music Therapy parents receive frequent e-mails with the articles of interest to the special needs community, including research on Autism, Down Syndrome, ADHD, etc.; conferences and trainings being offered in the local area; and information on music therapy practice. If you would like to receive these articles, and/or our monthly newsletter by e-mail, please e-mail us to join the mailing list.

 

Thursday, March 23, 2006

AutismLink Launches Mentor Program

Gainesville Music Therapy Parents,

I just received information on this mentoring program, which some of you may be interested in being involved with.

All the best,

Abigail Yeh


-----------------------------------------------

Remember how you felt when you heard the word "AUTISM?"

Remember what it was like when your child was first diagnosed with
autism spectrum disorder? If you were anything like me, you felt
lost, confused, and pretty much that your world had ended. You heard
the dreaded "A" word. I remember what it was like, vividly, and I'm
sure you do too.

AutismLink wants to help parents of newly diagnosed children by
launching our newest venture -- our mentor program.
(http://www.autismlink.com/mentor/)

Here's how! it works:

If you're a parent who has been through the ropes, your child was
diagnosed a bit ago, you know the system and can provide information
and support to another parent, sign up. Join the mentor list, and
when a parent in your area needs help, we'll pair you up. It's that
simple.

If you can spare some time to help a new mom or dad in the same
situation you were in not too long ago, then sign up. It may be a
phone call, or a few emails, or just a shoulder to lean on. But
everyone needs someone!

Just go to http://www.autismlink.com/mentor -- sign up to help other
people. At the bottom, click on "I want to be a mentor."

If you're a parent of a newly diagnosed child, fill out the same form,
and click on "I need a mentor" and we'll pair you with someone in your
area who can help.

permalink       posted on 7:03 AM      0 comments
 

 


 

Tuesday, March 21, 2006

Upcoming CARD events in Jacksonville area

Upcoming Events
Center for Autism and Related Disabilities (CARD)
University of Florida/Jacksonville
www.centerforautism.org
904-737-5239


April 2006

4/13/06 9am – 12pm: Flagler Co Community Training. Topic: Strategies for social skill development @ Flagler Co. School Board Building. Contact Dr. Mae Barker for more info.

4/19/06 6-7:30pm: Clay Co Autism Support and Hands-on Workshop for Parents. Topic: Teaching Social Skills @ Tynes Elementary. Daycare available. Call Erin Swenson at 737-5239 for more info.

4/22/06: 9:30am – 1:30pm: CARD and ASA-GJ Parent Workshop. Topic: “Addressing Challenging Behaviors” by Janice Gaboury, MS, BCBA. Location: Pump It Up 11840 Beach Blvd, Suite 10 Jax, FL 32246. Daycare to be provided. Call CARD to register.

4/27/06: 8:30am – 4:00pm: Regional Workshop on “Building Social Relationships: A systematic approach for teaching social interaction skills to children with autism and adolescents with autism spectrum disorders” by Dr. Scott Bellini. Location: Celebration Church 512 Kingsley Ave Orange Park, FL 32073.

Ongoing Groups:
Adolescent Asperger Group: This group will meet to discuss issues that face adolescents with Asperger Syndrome.

Adult Asperger Group: Please join us on the once a month to discuss issues that face adults with Asperger Syndrome.

Two Feet Forward: This school to work program will discuss self-determination issues, will develop real life profiles, interest inventories, leisure skills, work experiences and partnerships for time-limited work opportunities. This group will also explore job options and write resumes. This group will meet on the first Tuesday of the month from 6:30pm to 8:30pm at the CARD office. Contact: Anne Wilson.

Social Skills Group: Through direct instruction and group learning activities, such as role play and group discussion, your child be taught the social skills necessary to make friends, to keep friends, to “fit in”, and to experience the fun of playing with other children.

Staff Members Contact Info.:
Mae Barker, PhD, BCBA: mae.barker@jax.ufl.edu
Anne Wilson, M.S.T., BCABA: anne.wilson@jax.ufl.edu
Erin Swenson, B.S.: erin.swenson@jax.ufl.edu

permalink       posted on 12:49 PM      0 comments
 

 


 

New technology and a unique approach helps children with autism spectrum disorders

Medical Research News
Published: Monday, 20-Mar-2006


Using new technology and a unique approach, Binghamton University researchers are hoping to help children with autism spectrum disorders (ASD) deal with their most common and problematic areas of deficit - social and life skills.


Raymond Romancyzk, director of Binghamton University's Institute for Child Development, is heading up an intensive research project to learn how children - with and without autism - interact with the world around them. Using a combination of a state-of-the-art eye tracking system, miniaturized psychophysiological monitoring and multiple computers for high-speed processing, Romancyzk and his team are able to ask questions that could help answer how individuals with autism process information and stimuli from the world around them.


The team is using a tracking system that doesn't require the subject to wear a tracking device. Instead a video camera, built into a small desk observes a child. First, reference points are established by having the child watch a short animation, and with the help of a computer, the system overlays the position of a child's eyes onto a second video image of the child's field of vision. While the tracking systems observes the child's face, the eyes are located in the video image and computers record further eye movement.


This allows the team to see where and for exactly how long and where the child is looking, such as at faces, objects, and actions, either live or on video, and permits measurement of an index of physiological anxiety, and the more standard measurement of affect, performance, and behavior. The fact that children don't have any physical contact with the eye tracking system and don't have to wear any special apparatus makes it a great tool even with very young children, whether they have autism or not.


Gathering data from "typical' children will help researchers better distinguish where the differences between non-autistic children and children with autism. The new technology is enabling researchers to ask questions that may have far-reaching implications for educational and clinical approaches for autism.


"Part of the reason for this elaborate scheme is we've also been doing some research on how adults interact with children with autism, how they perceive what they think is going on versus what the child is actually doing," said Romanczyk. "This ties into the subtleties of social interaction that we take for granted. You look at someone and you can tell by their body posture, their gestures, tone of voice, eye gaze and so on, what's being communicated. With children with autism, it's more difficult to do."


The Binghamton University laboratory is the first to achieve simultaneous non-invasive measurement of multiple variables within the full range of individuals with ASD. To support their on-going research efforts, Romancyzk's team recently received funding through the Organization for Autism Research. One aspect of this grant will be to develop a parent-administered assessment of the child's social deficits. The assessment will be validated with the more comprehensive laboratory assessment process, and specific treatment strategies tailored to each child with severe social interaction deficits will be developed based upon the parental and comprehensive laboratory assessments.


http://www.binghamton.edu


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Thursday, March 16, 2006

First World Parkinson's Congress Spotlights Therapeutic Effects of Music


By Nancy Beardsley

Washington DC

14 March 2006

Recent decades have brought promising new treatments for Parkinson's disease, a neurological illness that causes tremors, rigidity and loss of balance. Ongoing medical research was a central focus of the first World Parkinson Congress, held in February in Washington, D.C. But participants also explored the benefits of other therapies, everything from exercise to nutrition to the creative arts. Serving as honorary chair of the Creativity and Parkinson's Committee was neurologist and best selling author Oliver Sacks, who has made the link between artistic expression and Parkinson's disease one of the focal points of his research.


Oliver Sacks is perhaps best known for his 1973 book Awakenings, later made into a movie starring Robin Williams and Robert De Niro. The book described his work with victims of a sleeping sickness epidemic that broke out after World War I. The sickness left them in a rigid, trancelike state with similarities to advanced Parkinson's disease. They began to wake up after Dr. Sacks treated them with L-dopa in the late 1960s, now a standard medication for Parkinson's.


In working with those patients, Oliver Sacks also discovered they had what he calls an "extraordinary" response to music. "These people who couldn't utter a syllable or take a step sometimes could sing beautifully and could dance, and music seemed to let them flow in a way they couldn't do in any other circumstances," he says. "We are an intensely musical species, even people who say they are unmusical and tone deaf. There's a remarkable amount of the brain that's concerned with processing music, far more than is concerned with processing language, and I think it's very much part of the human state."


Now teaching at the Albert Einstein and the New York University medical schools, the British-born Dr. Sacks has continued to explore the impact of music on the brain over the decades, expanding his focus to include dementia, Alzheimer's and hallucinations.


He has also gathered examples of other kinds of creativity that appear to have a liberating effect on people diagnosed with Parkinson's. An artist he met in the early 1960s was so disabled by the illness he could hardly move. "He got wheeled up to a big canvas, and then suddenly with a flourish, he did a beautiful opening brush stroke, and then with great energy and large gestures, he did the rest. And then he froze again."


Many other patients have demonstrated the same kind of response to the creative arts, Oliver Sacks adds. "So I think it's very interesting how the mechanisms of voluntary action can partly be bypassed with music and art and dancing and acting. There are Parkinsonian actors who can hold the stage for a long while, but more or less have to be carried off it."


Oliver Sacks says more research needs to be done into the physiological reasons for these cases. But in particular, the basal ganglia, which are affected in Parkinsonism, have to normally permit access to motor programs and memories, and this can get blocked in Parkinson's. And in a sense, I think music can almost act as a sort of prosthesis for this aspect of the basal ganglia and give one a structure of rhythm and a temporal structure which will allow people to walk and to do things."


That link is especially important to people like Charlie Nimovitz, a professional musician and songwriter who performed at the Parkinson Congress. The former leader of a wedding and party band, he was diagnosed with Parkinson's in 2000. He now gives concerts with an expanded repertoire that includes songs about living with the illness. Mr. Nimovitz says music has taken on a deeper meaning since his diagnosis, allowing him to explore lessons he has learned about humility, perseverance and gratitude.


Music has become a form of therapy for Mr. Nimovitz as well. "It can take me away to another place, where I feel more free," he says. And while he says he doesn't necessarily feel better physically when he performs, he does go through an emotional change. "No matter how I'm feeling physically, I get in a zone where I feel safe. And it's a nice thing."


Charlie Nimovitz sings and plays keyboards and accordion on his first CD since being diagnosed with Parkinson's, called Awkward Dance. He also performs for people with the illness, and says they seem to get a kind of healing benefit from his music. He was among an international array of artists -- from sculptors to poets to photographers -- whose work was showcased at the Congress.


Oliver Sacks believes achievements like theirs demonstrate the importance of taking multiple approaches to the treatment of Parkinson's disease. "I'm all for the wonderful technological progresses of brain imaging and all the molecular and cellular approaches which now include neuroprotective drugs and the potential for stem cells and of nerve growth factor. But I think one also needs to address the individual as a whole, and then everything from occupational therapy to music therapy to relationships and love and work. One saw this so clearly with the Awakenings patients. L-dopa was necessary but not sufficient. On top of L-dopa, there had to be a worthwhile life available for these people."


A renowned neurologist who believes doctors should still make house calls, Oliver Sacks says medicine must start with the medicinal, but then move on to include everything else that makes for a full and meaningful life.


permalink       posted on 7:41 AM      0 comments
 

 


 

Friday, March 10, 2006

M.I.N.D. Institute Launches Largest Biomedical Assessment of Children with Autism

Newswise — Multidisciplinary teams of physicians and scientists at the University of California, Davis, M.I.N.D. Institute have launched the nation’s most comprehensive assessment of children with autism to detect the biological and behavioral patterns that define subtypes of the disorder.

Called the Autism Phenome Project, the large-scale, longitudinal study will enroll 1,800 children -- 900 with autism, 450 with developmental delay and 450 who are typically developing -- who will undergo a thorough medical evaluation in addition to systematic analyses of their immune systems, brain structures and functions, genetics, environmental exposures and blood proteins.

Children will be 2 to 4 years old when they begin participating in the study, and their development will continue to be evaluated over the course of several years. The first phase of the research is funded by the UC Davis M.I.N.D. Institute and philanthropic donations.

“Children with autism clearly are not all the same,” said David G. Amaral, research director of the UC Davis M.I.N.D. Institute and co-director of the project. “The tremendous variation leads us to believe that autism is a group of disorders rather than a single disorder -- several autisms versus one autism. We are determined to provide the specific biomedical and behavioral criteria that accurately define distinct subtypes."

Autism has common hallmarks: difficulties initiating and sustaining social interactions, impaired communication skills and restricted, repetitive patterns of behavior. However, these hallmarks vary in severity. In addition, some children with autism can have co-existing conditions such as cognitive impairments, seizures, coordination issues or gastrointestinal difficulties, while others do not. This heterogeneity has been a major obstacle to progress in autism science.

Another obstacle involves access to reliable data. Autism science includes many quality studies on specific aspects of the disorder -- from genetics and immunology to behavior and imaging -- that can be difficult to combine and compare. With the Autism Phenome Project, UC Davis M.I.N.D. Institute researchers aim to overcome this limitation.

“We spent two years designing the project so that it would be both comprehensive in scope and fully capable of integrating data across disciplines,” said Amaral, a neuroscientist who specializes in brain systems involved in memory, emotion and social behavior. “Our goal is to identify specific types of autism and develop a database of biomedical information that can be shared with the worldwide community of autism scientists. This is crucial to refining our understanding of autism and to developing targeted treatments for a specific ‘type’ of autism as early as possible so children can reach their fullest potential.”

According to Thomas R. Insel, a physician who is director of the National Institute of Mental Health, the Autism Phenome Project is an important new direction in autism research.
“Multifaceted biomedical approaches are exactly what is needed right now,” said Insel. “This is a monumental task, but one that needs to be undertaken if we are to accurately diagnose and treat people with autism.”

While the Autism Phenome Project is ambitious, Amaral believes its successful completion will shorten by decades the road to discovering the causes and treatments of autism, a neurodevelopmental disorder that now affects 1 in 166 children in the United States. The unexplained rise in autism prevalence has frustrated parents and scientists trying to find answers.

“The extraordinary biomedical tools currently available at the M.I.N.D. Institute make it the ideal environment for launching this clinical research effort,” he said. “The time is right for us to build a strong database of information that we can all share in order to speed the discovery process and clarify the variability that now plagues autism research. From there, we can more quickly identify causes and treatments, and by adding collaborative partners we will be able to gather as much information as quickly as possible.”

The UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute is a unique collaborative center for research into the causes and treatments of autism, bringing together parents, scientists, clinicians and educators. For further information, go to http://www.mindinstitute.org.

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Thursday, March 02, 2006

Study links autism, vaccine

By Jon Brodkin/ Daily News Staff
Thursday, March 2, 2006

Autism diagnoses have dropped nationwide since mercury was removed from most childhood vaccines, according to a new study that some say lends credence to charges that vaccinations were responsible for a huge increase in autism cases.

About 4,700 families -- including ones from Framingham and Waltham -- have pending claims in a federal vaccine court alleging that mercury in vaccines caused their children to develop autism.

The allegations are controversial and viewed with skepticism by many government officials and medical professionals. But supporters of a vaccine-autism link say a new report in the peer reviewed Journal of American Physicians and Surgeons proves that the removal of mercury from vaccines has led to a decrease in autism cases.

"This study is exactly the kind of thing people have been waiting for for three years now," said Richard Deth, a neuropharmacologist at Northeastern University who has testified in front of Congress on this issue. "It was recognized that this type of data would be (necessary) to see whether this theory had validity or not."

The study by two researchers was criticized by a government vaccination official who said it drew conclusions from unreliable data.

"I don’t think this study can really be taken to provide any evidence one way or another," said Dr. Robert Davis, director of the immunization safety group at the Centers for Disease Control and Prevention.

But the study was warmly received by Jared Hansen, a Framingham resident with two autistic children who filed a claim in the federal vaccine court.

"It’s certainly the data we’ve been expecting and waiting for. I’m glad to see it’s been published," Hansen said. "I believe it will swing some people who are sitting on the fence."

Hansen’s claim is pending in front of the National Vaccine Injury Compensation Program, a no-fault system that pays financial settlements from a trust fund consisting of vaccine surcharges. The program is considering claims in one omnibus proceeding from Hansen and 4,700 other parents, including Mike Chmura of Waltham.

Between 1988 and 1992, the federal government more than doubled the amount of mercury injected into babies by recommending additional vaccines that contain thimerosal, a preservative containing mercury.

Since then, estimated autism prevalence soared from one out of 2,500 births to one in every 166. Federal officials say the increase is at least partly explained by changes in diagnostic guidelines, but some researchers believe mercury in vaccines is to blame.

Thimerosal is still used in flu shots, but was eliminated from most other childhood vaccines by 2003.

A father-son research team determined that new diagnoses of autism and other neurodevelopmental disorders have dropped since then after analyzing data from the national Vaccine Adverse Event Reporting System, the U.S. Department of Education and the California Department of Developmental Services.

Additional doses of mercury-containing vaccines were associated with a 2- to 8-fold increase in risk for neurodevelopmental disorders, they wrote in the latest issue of the Journal of American Physicians and Surgeons.

"Significant decreasing trends in newly diagnosed (disorders) were observed ... from mid-2002 through 2005," wrote Dr. Mark Geier and son, David. Mark Geier is president of the Genetic Centers of America and his son is a graduate student in biochemistry at George Washington University.

Their study was criticized by officials who said the data bases the Geiers analyzed are not reliable. The Vaccine Adverse Event Reporting System can contain reports filed by anyone, including doctors, patients and lawyers, Davis said.

The Department of Education numbers are skewed, another official said, because the DOE did not make autism a separate diagnosis until the 1990s. That led to an artificial increase because children who previously had different diagnoses were then considered autistic, said Dr. Marie McCormick, a Harvard professor who chaired an Institute of Medicine committee that dismissed any link between vaccines and autism.

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Workshop: Special Needs Financial Planning

Gainesville Music Therapy Parents,

Please see the email below for information on an upcoming workshop on "Planning for the Future of Your Child of Dependent with Special Needs". The workshop is being held in Jacksonville. For more information, email me and I will forward a flyer for the workshop. You can also visit their website. No sponsorship or commercial relationship with MetLife is implied- just passing along the information.

All the best,
Abigail Yeh




Dear Friend,

Attached please find an invitation to attend my workshop on "Planning for the Future of Your Child of Dependent with Special Needs", which will be held at my office on Tuesday April 4th at 6:00 PM. Please feel free to invite anyone you feel may benefit from this valuable information. Should you have any questions, please feel free to contact me at (904)332-8830 Ext. 21.

Regards,
Mike

Michael J Sousou, CLU, ChFC, LUTCF
MetDESK® Specialist (MetLife's Division of Estate Planning for Special Kids)
Financial Planner

Please visit my website at http://www.michaelsousou.com, where you can find information on MetDESK®, get detailed quotes, and register for an upcoming workshop!!

Life insurance and annuities offered by Metropolitan Life Insurance Company, New York, NY 10166. Investment Advisory Services and mutual funds offered by MetLife Securities, Inc., New York, NY 10166.

permalink       posted on 6:06 PM      0 comments