Tuesday, November 29, 2011

A Batman Fan's Message to Warner Brothers’ Film Writers, Producers, and Directors

Office Clerk
Center for Autism Research       
Batman is one of my favorite fictional characters because he uses his brain and brawn to solve crimes. He also knows how to stand his ground. For example, in the animated series he didn’t let other members of the Justice League push him around because of their super powers. Batman is also a mysterious character. For example, it is hard to tell if he is willing to sacrifice his happiness in order to be Batman, or if there is something inside of him that just won’t let him enjoy himself.  I’m torn – sometimes I feel sorry for him, sometimes I don’t, which is why I think he’s so interesting.

A message to Warner Brothers’ Film Writers, Producers, and Directors
If you are planning to make more Batman films after The Dark Knight Rises, here is a list of suggestions:

No.1: The Origin
There is no need to retell batman’s origin. In the comics and in one of the animated films there are gaps in the story that leave more to the imagination. For example, how did he learn to be a skilled fighter? Where did he get his gadgets? Where did he go when he disappeared for 7 years? Eventually, the comic books and the 1992 animated series attempted to answer those questions. In Batman Begins (2005), Christopher Nolan did a good job completely filling in the missing gaps. If you want to tell Batman’s origin on screen again, you should use the version from the comic book and do it in the movie opening, as a flash of events.
No.2: The Detective
 Batman should be more of a detective in future films, because he is also known as the world’s Greatest Detective. For example, in the 1992 animated series he goes undercover, looks for clues, uses sciences, and integrates people. I would like to see that on screen. We do see the detective side of batman in the animated film Batman: Mask of the Phantasm, and in the recent Dark Knight; however many of us would like to see Batman do more detective work.

No.3: Campy Batman
Don’t make Batman campy. Bruce doesn’t have fun being Batman – fighting crime is personal for him. He is motivated by fear, anger, remorse and guilt. By making him campy you take away the seriousness of his character. Let’s compare Batman to Zorro. Zorro is mysterious, dresses in black and hides in the shadows like Batman. But Zorro has fun fighting corrupt leaders, and his motivation is for the good of the people. He doesn’t see himself as a vigilante. Batman’s motivations are different from Zorro’s. Batman wasn’t always serious in the comics, but he is today. When I was a kid, I watched the 1966 Batman show and it was campy. I didn’t think the show was bad, but there was just no reason for Batman to be excited for his work; the police in the show were not corrupt and the villains were jokes.

No.4: The Love Interest
I would like to see a Batman film without a love interest. If there is one however, I’d like to see her serve more of a purpose. When Bruce Wayne is Batman, he is dangerous. He can’t settle down and have a family, because love is not a priority for him. In past films, his love interests are just damsels in distress. My problem with the romance is that I am not convinced that the two characters are in love because the films don’t establish why they are in love. The only reason that they are in to each other is because they’re attractive. In some action and adventure films, there are strong independent woman. I did like the idea of having a psychologist, Dr. Chase Meridian, as a love interest in Batman Forever. I like that the movie tried to explore Batman’s psyche.

No.5: The Villains
Do not bring back the Joker. Heath Ledger did an awesome job as the Joker in The Dark Knight. Let’s face it – I don’t think anyone can top his performance. Maybe Johnny Depp, but he’s getting old. The villains I would like to see are Mr. Freeze and Dr. Hugo Strange. In Batman and Robin, they gave Mr. Freeze a sense of humor, which messed up the character. He is supposed to be a heartless individual. Mr. Freeze is also one of my favorite villains, which is why I want to see him correctly portrayed in future films. Dr. Hugo Strange, the therapist that figured out Bruce Wayne is Batman, is another villain that everyone is not familiar with. I am curious if Warner Brothers would portray him correctly on screen as well.

No.6: The Sidekicks
Do not bring back any of Batman’s sidekicks. He likes to work alone. He has too many sidekicks, like Robin, Batgirl and Nightwing. If you are going to bring one of his sidekicks, bring back Robin. In the comics there are six different characters that played Robin. I like the first Rodin, Dick Grayson, because he and Bruce share things in common. For example, they have both felt guilty and responsible after watching their parents’ deaths. I think you should put Dick Grayson in the film and leave an opening for his character as Robin to be completed later in the other films. Also, keep the Robin suit used in Batman Forever.            

Monday, October 31, 2011

A Family's Perspective on Research at CAR

Wendi Marchesani

Dear CAR Team,

I am writing to express my sincere appreciation for all you do at the Center for Autism Research. My husband and I have two boys, each with a different classification on the autism spectrum. It means the world to us that CAR is doing what they can to help learn about this diagnosis. 

My elder son, Nicholas, is only 9, yet he is extremely proud of his Asperger’s diagnosis. Nicholas is involved with the FaceStation study and is thrilled to be a “test pilot” for this new program. He loved every part of the study, including the behavioral testing, MRI’s, and MEG. Knowing that the information gathered from his participation will help the CAR team is “icing on the cake” for Nicholas. 

Adam, our younger son, took part in the Study of Social Functioning and Genetics. We were able to obtain valuable advice from your clinicians to pass on to his educators. In fact, we are meeting with our case manager tomorrow to discuss one of the recommendations offered by your team. Additionally, we know that the genetic testing is so very important, especially for future generations.

We had the pleasure of being present at the Lurie Family Foundation’s recent press conference to announce a new donation by the Foundation and the Eagles organization to CAR. It is a blessing to know the Lurie family has been so generous to your organization. Despite the number of Americans affected by autism, it remains an overlooked area of research when you consider the federal monies paid for other health care issues. Without help from people like the Luries, research in such a positive direction might not be possible. Of course, our boys also loved meeting the Eagles Cheerleaders and Swoop as well!

We thank you all from the bottom of our hearts and look forward to helping out more in our upcoming visits.


The Marchesanis

Chris, Wendi, Nicholas and Adam

Tuesday, September 13, 2011

Witticisms by Dude

Julianne Fretz, BA
autismMatch Research Assistant
Center for Autism Research

When you hear people talk about autism spectrum disorders (ASD), the focus tends to be on what children and adults with ASD cannot do.

As the older sibling of a brother (nicknamed Dude) diagnosed with PDD-NOS, I am acutely aware of the things that are challenging for him. However, instead of focusing on the issues with elopement, functional speech, self-care, etc., I choose to focus on the many awesome things about him.

Over the years, I have learned that the way you approach an autism diagnosis, or anything in your life, is your choice. You can make the decision to focus on the negative or the positive. All you have to do is choose.

I am not traditionally known for being an optimistic thinker. Dude has brought that out in me, especially over the last few years.

Little things he says or does always put a smile on my face. I consider every one of them a small victory; a sign of both the humor and intellect that lives within him that mainstream society is prone to overlook and/or question. This is why I started keeping track of these moments on my personal blog. There I write down moments big and small so that Dude’s extensive support network can smile, laugh, grow, and learn with him.

My hope for the CAR community is that you never downplay the small victories in your and your children’s lives. It is so easy to be bogged down in the world of “cannot.” The difficult path is choosing and celebrating the world of “can.”

Please enjoy one of Dude’s many witticisms.

Back story #1
Dude has been doing therapeutic horseback riding for 4 or 5 years now. He LOVES it. There are three commands that he uses with the horses:

Whoa = Stop
Walk on = Go
Trot = Trot

Dude-ism #21
Last night, Dude and Mom were driving back from his music class. The light turned green, but Mom was distracted and didn’t accelerate immediately. Mom heard Dude mumble something from the passenger seat.

“What did you say?” asked Mom.

“Walk on,” Dude replied.

Wednesday, August 10, 2011

Couple Shares Their Wedding Day with CAR

Stacy Lunetta
Clinical Audiologist
Hospital of the University of Pennsylvania
When the time came to select a wedding favor for our guests for our May 2011 wedding, my husband Adam Douberly and I decided that a donation to the Center for Autism Research (CAR) would be much more meaningful to our friends and family than almonds or chocolates.
As a Clinical Audiologist at the Hospital of the University of Pennsylvania, I am fully aware of the benefits of multi-disciplinary research institutions in finding effective treatments.  Thus in making our donation to CAR at The Children's Hospital of Philadelphia, we knew we had an opportunity to help an institution that was both local and very close to our hearts.
Dane Soda is one of our three 10-year old triplet cousins, and he was diagnosed with autism at the age of two. Since his diagnosis, our family has rallied around Dane, his challenges and successes, and has worked together to give him the opportunities that his brother and sister have.  With the help of his dedicated parents, supportive family, and selfless teachers, Dane has grown from a complete introvert to a child who wants to be a part of everything. With intense supports, Dane also grew from a kid who existed only on a liquid diet, to a child who now orders filet mignon at restaurants. Seeing Dane blossom into a very active, happy, healthy, successful child had left us wanting to help give other children with autism the same opportunities.
Our donation to CAR allowed to us to give to a wonderful cause that was incredibly personal. It is amazing how little attention and funding is given to pediatric autism research efforts despite the astounding prevalence and how many kids are newly diagnosed each day. Each guest in attendance to our wedding received a pin with puzzle piece ribbon, kindly supplied by CAR, in hopes of raising autism awareness amongst our family and friends. These ribbons were proudly worn by our wedding guests and seeing them displayed in wedding photos will be a lifelong reminder of our small gift to a great cause.  
All donations to the Center for Autism Research (CAR) directly support research into the causes of autism spectrum disorders and effective interventions. For more information on donating to CAR, visit our Children's Hospital Foundation page or email autism@email.chop.edu.

Friday, June 24, 2011

FaceStation Gaming Study at CAR

Liz McGary
Clinic Intern
Center for Autism Research

Did anyone ever teach you what a sad face looks like? How about a happy one? What about confusion, anger, or surprise? Most likely, no one had to teach you what those emotions looked like because your brain figured them out on its own. The Fusiform Gyrus is one important part of our brain that allows us to process faces and facial information, and for most people it does its job just fine. For people with autism spectrum disorders (ASD), however, different functioning of this brain structure can make reading faces and situations extremely difficult.

When I was in high school, I volunteered with a class of three teenagers with ASD. During my first visit, the classroom teacher described his students’ inability to read social cues. Mr. G explained that school bullies would politely ask to “borrow” his students’ lunch money everyday.  Although most teenagers would see right through the bullies’ sneaky grins, Mr. G’s class assumed that any smile was a friendly one; they handed over their lunch money time and time again.

 I was reminded of Mr. G’s story last week during my internship at the Center for Autism Research (CAR). CAR is in the process of testing out a new intervention designed to help children with ASD overcome facial processing difficulties and eventually improve their social skills. Of course, if an intervention is designed to help kids learn, what could be better for the job than a computer game? The intervention, known as FaceStation, is a suite of computer games that aim to improve facial recognition skills in a way that is interesting and fun. For example, in one game, Face Invaders!, aliens have come to school and are keeping faces captive--you must use your knowledge of facial identities or expressions to free the faces!

CAR researchers are testing the effectiveness of the FaceStation games using functional magnetic resonance imaging (fMRI) before and after game play. The study team will see if areas of the brain responsible for processing social information are more activated after game play. Finding that they are would indicate that the skills developed through playing the games might be generalized to other settings – like school and home.

It is really satisfying to see that there is an entire team of researchers working to help students like Mr. G’s, and I am really excited that I get to be a part of it.  If you have a child between the ages of 8 and 18 who might be interested in joining the FaceStation trial intervention, email autism@email.chop.edu or call 1-866-570-6524 for more information. 

Wednesday, May 25, 2011

Inside Huddle Up for Autism

Tuesday, April 26, 2011

Philadelphia Teacher on Research in the Classroom

Eileen Cahill
Teacher, Autism Support Classroom
Eliza B. Kirkbride Elementary

Growing up with an older brother with Schizophrenia, I have always known that I wanted to help children with special needs and their families. For the past three years, I have worked as an autism support classroom teacher at Eliza B. Kirkbride Elementary in Philadelphia. 

During my first year at Kirkbride, the Philadelphia Autism Instructional Methods Study (Philly AIMS) began its partnership with the School District of Philadelphia. Philly AIMS is the largest autism intervention study in the U.S. The study tries to determine the best ways to move evidence-based autism interventions into practice.   I signed up for the study, and it turned out to be the best decision I ever made for my students. 

As part of the study, I was trained in the Strategies for Teaching Based on Autism Research (STAR) Program. This program has three main parts:
1.     The creation of routines for all daily activities
2.     One-on-one teaching of new skills to master
3.     Development of language through play

The Philly AIMS team worked with me and my classroom assistant on a weekly basis to implement these new systems in my room.  We started using individual picture schedules for each student.  This visual guide provided comfort and stability for my students because they knew exactly what their day would look like.  I noticed an immediate decrease in tantrums and outbursts that had been caused by difficulties with transitions.  Picture boards also helped my students to follow directions.

Through the STAR program, I also learned a progression of lessons to teach basic to advanced academic concepts, as well as strategies to motivate my students to learn.  One example of a motivational strategy is a penny board.  As students work through a difficult task they are given pennies for correct answers.  When they get a total of five or ten pennies they are given a reward.  You wouldn’t believe how excited my students were to earn pennies so they could have a few minutes with a slinky, Barbie, or Play-doh. 

The aspect of the STAR program that has helped my students the most is the Pivotal Response Training (PRT). PRT has been shown to (for many kids) increase language and social skills through play.  I feel strongly that students with autism need to know how to play and talk with their regular education peers.   I am fortunate to have a stage in my classroom, and this entire area has been devoted to talk through play. On our visual schedule, play time on the stage is called “talk”.  It has become an absolute favorite for all my students. 

These simple changes made a huge impact on my classroom.  Not only did my students start to transition easier and follow instructions, but I found that learning increased. As a teacher, this is the most positive result you can ask for.
The progress in language and social skills of my students has been amazing.  According to the yearly assessments administered by the speech-language therapist in our school, my students are also making significant progress in their listening comprehension and oral expression. 

We have recently purchased a set of costumes for dramatic and imaginative play.  My students are so excited to pretend to be chefs, mailmen, astronauts, and doctors, and they are doing an excellent job playing their parts.  The social and play skills they are learning during “talk” have started to creep into other areas. 

Students are talking more to each other at breakfast and lunch times.  They are playing more with each other during gym and playground times.  These social and play skills are especially helpful as my students are beginning to be included into regular education classrooms.  Currently, all of my students are being included into regular education for one to two hours each day, in addition to eating lunch and going to preparation periods with their regular education peers.

Implementing the STAR program in my classroom took a lot of work and dedication. While there is no one-size-fits-all program for every child, STAR gave me the tools I needed to create a curriculum that really proved to be effective for many of my students.

My classroom has truly come a long way.  Recently, Eliza B. Kirkbride Elementary was selected as the “Best Practices for Students with Autism” school in our academic division.  Our success story is due to a fantastic group of students that works so hard every day, a dedicated school staff, and the Philly AIMS Study that gave us the tools and structure we needed to succeed. 

To learn more about Philly AIMS, please visit the Center for Autism Research Website, call 267-246-7590, or email autism@mail.med.upenn.edu.

Monday, March 7, 2011

Autism Community Shines in April

Julianne Mesaric, BA
Autism Outreach Liaison,
Center for Autism Research
National Autism Awareness month has been celebrated in April since the 1970s. Families, individuals, and organizations have come together for the past 40 years to educate the greater community about autism spectrum disorders and promote greater acceptance and understanding.
April is an especially busy time for the outreach team at the Center for Autism Research. It’s also the most fun! Our outreach team has grown from 1 to 5 since CAR’s inception in 2008, and together we have connected with thousands of families, educators, and professionals who are intrinsically connected to someone with autism, not only during the month of April but every day. It is together with this community that we celebrate the joys and address the challenges that autism brings to many, many lives.
There are a variety of fantastic events happening in and around the Philadelphia area this April, from fun walks and runs to informative lectures by autism experts. I hope that you will be able to be a part of at least one. I guarantee that you will be as in awe as I am of the strength, acceptance, knowledge, and support that radiates from the autism community. See you there!
Friday, April 1st
Hosted by Chestnut Hill College and CORA services

Saturday, April 2nd
2nd Annual Autism Awareness Night at Please Touch Museum
Hosted by the Variety Club

Sunday, April 3rd
Awareness Walk for Autism Education and Resource (AWARE)
Hosted by the Variety Club

Wednesday, April 6th

Lecture: Characteristics of Autism Spectrum Disorders
Hosted by Bancroft NeuroHealth
Saturday, April 9th
1st Annual Walk/Race for Autism
Hosted by Autism Delaware
Sunday, April 10th
Huddle Up for Autism
Hosted by the Center for Autism Research at CHOP

Friday, April 15th

Philadelphia Phillies Autism Awareness Night
Hosted by the Philadelphia Phillies
Saturday, April 16th
Lehigh Valley Walk Now for Autism Speaks
Hosted by Autism Speaks
Hosted by the Bucks County Autism Support Coalition

Sunday, April 17th
Autism Day at the Philadelphia Zoo
Hosted by the Autism Society of American, Philadelphia Chapter

Wednesday, April 20th
Lecture: Medical Developments in the Biology of Autism
Hosted by Bancroft NeuroHealth
Friday, April 22nd
Autism Awareness Day at Sesame Place
Hosted by Variety Club
Tuesday, April 26th and Wednesday, April 27th
Lecture: Michelle Garcia Winner – “Social Thinking”
Hosted by Social Thinking
Wednesday, April 27th
Next Steps Workshop for Professionals
Hosted by the Center for Autism Research at CHOP
Thursday, April 28th
Sally Rodgers, Ph.D Professor, Psychiatry and Behavioral Sciences, UC Davis M.I.N.D. Institute
Hosted by the Center for Autism Research at CHOP
Friday, April 29th
5th Annual Autism Conference: "The Voices of Advocacy"
Keynote Daniel Gottlieb, PhD and Ari Ne'eman
Hosted by La Salle University and Green Tree Partnerships
Friday, April 29th

Is your organization hosting an autism awareness event in April or do you know one that is? Feel free to share the information below!

Tuesday, February 8, 2011

Is My Child Ready for Summer Camp?

Gail Stein, MSW
Social Worker, Center for Autism Research

Whether or not to send your child to summer camp is a difficult question for every family. This question is compounded when your child has autism.   On one hand, summer camp can provide a child with opportunities to discovery new things, participate in activities, and make friends from different places.  On the other, you can’t help but ask yourself if he or she ready for camp life. You may be thinking about how anxious your child becomes when he is not around familiar things. Or that he thrives on his routine. And what about the fact that he only eats white foods?!  Should you push your child out of the nest and allow him to fly, or keep him home, safe, protected, ensuring that no imagined catastrophes even have the chance to occur?

My 20 years of experience as a social worker has led me to see first-hand the camp experiences of kids who have autism. I have observed that kids thrive on opportunities to develop connections in new situations, with new people, with new friends – even for short periods of time.  Adults thrive on opportunities to have their children in safe, trusted environments for short periods of time (a weekend, a week, or a couple of weeks). Families do well when they have breaks from one another.  After a short or long stint away from home, kids and adults alike seem to come back to their familiar routine refreshed, renewed, and somehow different.  

But how does a parent develop the courage and strength to “let go”?

First thing – choose the camp you trust.  Valley Forge Educational Services recently held a fair connecting families with camps in Philadelphia and the surrounding counties that are known particularly for their ability to accommodate children on the autism spectrum; their Special Kids Camp Directory can be found here. When looking at camp information, consider your child’s likes and dislikes. What tickles your child? What are those things you wish you were able to provide and /or expose him to? Perhaps that’s horseback riding, hikes in the woods, toasting marshmallows over a fire, participating in a theater project, or daily swimming. Or maybe it’s more specialized, like a camp that offers cooking classes, emersion in a foreign language, video production, or sports.

Once you decide on what type of camp may best suit your child, schedule a visit to the camp. During this visit, you should plan to meet the administrator, director and any other staff available. These will be individuals responsible for your child’s safety, program, and good time at camp.  Here are some questions to ask during your meeting:

What are their credentials?  How long have they been at the camp?  Are they responsible? Are they capable? Do you like them? Do they know how to have a good time? What's the staff-to-camper ratio? How old are the counselors and where does the camp recruit them from?  How many counselors return from the previous year? What percentage are new staff? What kind of training is provided for staff? If your child needs a special diet, can the camp provide appropriate meals? If not, can you provide food for your child? Do the counselors have first-aid training? What kind of medical staff is available in the infirmary and during what hours? Can the staff administer any medications your child needs? How are behavior problems handled?  Are they willing to help you construct a behavior plan?

How are behavioral and disciplinary problems handled?
This is where the director’s philosophy comes through loud and clear. Positive reinforcement, assertive role-modeling, and a sense of fair play are generally regarded as key components of camp counseling and leadership. Rules are necessary in any community, and the disciplinary approach taken should be reasonable and well-communicated. Does the staff have the training to motivate positive behavior and the resources to get help from supervisors who are professional educators? Do counselors understand concepts about boundaries and developmentally appropriate behavior? Are they equipped to provide natural and logical consequences, where appropriate, to emphasize children’s ability to develop resilience and decision-making skills?

How does the camp handle special needs? Is the camp prepared to provide for special needs? If your child has special requirements, ask the camp director about needed provisions and facilities. Are there nurses on staff? A health center? What are the protocols if a child is injured or ill? Are special foods available for campers with restricted or special diets?

How does the camp handle adjustment and separation issues? 
Is the camp prepared to work with your child if there are adjustment or separation issues? Who are these people, and what are their credentials? Will the director keep you informed of your child’s progress if this occurs?

Although you can get some of this information through phone calls, emails, brochures, and websites, I recommend visiting the camp. You can talk to the director, visit the site, and get a comprehensive picture of where your child will be. The best way to get a real feel for the camp is for you and your child to visit it together.

Just remember that whatever the special need, there's likely a camp out there to suit your child. With some research and understanding between you, your child, and the camp director, your camper-to-be can have an unforgettable summer.

Trying to Understand the Causes of Autism

Craig Newschaffer, Ph.D.
Professor, Drexel University School of Public Health
Primary Investigator, EARLI Study
Reprinted with permission from Special Families Guide

It was a notable year for autism on screen. Two decades removed from Rain Man, a major studio released a film featuring a protagonist with autism. The movie Adam took the well‐trod cinematic road of probing a relationship between twenty‐somethings in New York City, only this time one of them had Asperger’s syndrome. In February HBO premiered a biopic on Temple Grandin, a university professor with autism whose life and world‐view have already inspired the millions who have read her books. The fictional Lisbeth Salander, eponymous heroine of The Girl with the Dragon Tattoo which is now gracing art houses around the country, has Asperger’s Syndrome and a counterculture edge both of which she deploys freely in solving a forgotten string of gruesome murders.
Given all the recent celluloid attention devoted to autism, one may wonder whether we are already well‐enough aware. Unfortunately, in the area where I spend my days – the science of trying to understanding autism’s causes ‐ we still remain very much in the dark. Indeed, autism remains a growing public health epidemic.
One thing we do know is that autism is strongly influenced by genetics and we even have some clues about particular genes likely to be involved. But the genetics of autism are far more complex than first imagined. No single common gene by itself causes autism – individuals with autism probably carry many different combinations of multiple genetic mutations. Some of these mutations are inherited, but others are new ‐ appearing for the first time in affected individuals while completely absent from their parents’ genomes. A portion of autism’s genetic risk may not even be carried in the standard DNA alphabet – a newly discovered system of DNA on/off may also be commonly involved. And then, at least in some cases, genetics may only come into play by making the brain of a developing fetus, baby, or child more susceptible to the influence of some exposure in the environment.
Important investigations of the influence that environmental exposures, like infections and chemicals, may have on autism risk have really only recently begun in earnest. The Early Autism Risk Longitudinal Investigation (the EARLI study), which my colleagues and I launched last summer, is designed explicitly to explore environmental influences on autism risk while acknowledging the importance of genetic susceptibility. The study is nationally coordinated by the Drexel University School of Public Health, and includes participating institutions in Baltimore and northern California. In EARLI we will follow over one thousand mothers of young children with autism from the start of a subsequent pregnancy to the time the baby is born. We continue following the new baby through its third birthday – all the while collecting comprehensive information on a wide range of exposures and assembling genetic data from the family.
So, while the movie of autism’s causes remains very much the mystery story, there are encouraging plot points. Investment in autism research has increased markedly – in fiscal year 2008 the federal government committed nearly $120 million dollars to autism research, and then added another $85 million through the economic stimulus. As a result, a number of large, comprehensive studies investigating the complex causes of autism, like the EARLI Study, are now underway. What we ultimately learn about causes will be invaluable in guiding next generation strategies for minimizing impairment and maximizing potential for individuals with autism.