Wednesday, July 21, 2010

National Database for Autism Research Consolidates Research Results

The upcoming Fore Autism Golf Tournament to be held in Potomac on August 2 is a fundraiser for an autism research portal known as NDAR—the NIH National Database for Autism Research.

NDAR is a unique project, in that it takes research results from autism studies and houses them in a common database, making it available for other researchers in the future. This means that research studies sponsored by NIH-recognized research institutions will have an available pool of research available to them.

For example, the long and costly process of diagnosing an individual with autism can result in lower numbers of participants in autism research studies. Recruiting typically developing children can also be difficult. This means that autism studies may have fewer participants than studies of other disorders. With NDAR, that information will already be available, allowing a richer study.

I spoke with Dan Hall, Manager of NDAR, and parent of an autistic child himself. He told me a little bit about NDAR and how it can help parents of children with autism.

He told me that NDAR has already started to collect data and will begin to share it this September. Begun in earnest in 2007, the people at NDAR expect to be able to start rich dataset sharing in 2012, when many of the original grants contributing to NDAR will end. The Fore Autism Golf Tournament will help fund the data sharing.

"Better science will result in better treatments," Hall told me, going on to say that NDAR hopes to provide research information to the public as well as to researchers and scientific publications.

"When a breakthrough happens, we want parents to know about it," he said. "Parents, out of desperation, often try different treatments, possibly helpful but possibly not—and sometimes harmful. I think NDAR can bridge the gap between the science and getting the information directly, allowing the general public to be better informed."

There are several other uses for a tool such as NDAR, Hall explained. It will standardize the data collected between research sites so that data can be easily shared. Also, because researchers will be sharing all the underlying data, it enables other researchers to corroborate—or refute—research results.

Furthermore, younger, less well-established researchers will have the opportunity to have their ideas funded because of this access to clinical data. "Providing a means to get more quality applications will result in more funding directed toward autism," said Hall.

Made up of a small group headed by NIMH Associate Director Dr. Michael Huerta, the NDAR team includes three parents of children with autism as well as an adult with autism.

"We really do have the support of the NIH and the scientists," says Hall. "It is really a collaborative project. Parents working with scientists and NIH employees, all trying hard to help improve the lives of those affected."

Sunday, July 18, 2010

Event Summary-ette

I've been very busy this week, so haven't been able to post about upcoming events. There's not a lot happening this week, but please check the AutMont Calendar to see what's coming up!

Also, thanks to everyone who filled out my demographic survey. I chose and emailed the winner of the $20 gift card using Random.org. The survey is still open if you feel like answering the questions just to help me out. :)

Have a wonderful week and I hope your summers are going well!

Tuesday, July 13, 2010

Voter Registration at the Arc of Montgomery County

A representative from MDLC & the Montgomery County Board of Elections will be on hand July 14 from 4:30 to 5:30 p.m. to assist individuals with disabilities to register to vote or to make changes to an existing voter registration.

Please bring a Maryland photo ID or your social security number. This event will take place at The Arc of Montgomery County (11600 Nebel Street) in Rockville.

Solving the "Rubik's Cube" of Social Skills

by Jamell White, Clinical Director, JSSA

Making friends, joining in group games or projects, attending parties, and relaxing with extended family are often among life’s pleasures. However, some children, teens and young adults find working, playing and celebrating with others as puzzling as trying to solve the Rubik’s Cube. Why these difficulties? Many times it is because they need help with strengthening their social skills.

What Are Social Skills?

Social skills are skills in interacting and communicating with others. This includes knowing how to start and keep a conversation going. Noticing and responding to body language and facial expressions are social skills. Sharing, listening, turn-taking, and speaking in an appropriate voice volume and tone are other examples of social skills. In short, social skills allow people to give and receive messages that show they are attuned to others.

Social skills are important because they lead to the development of positive relationships with family, friends, neighbors, teachers, classmates, bosses, and co-workers. Strong relationships are vital in developing happiness and self-esteem. Being welcomed, included, and trusted feels good and self-affirming at any age.

How to Develop Social Skills

Social skills develop and mature during childhood, as youngsters meet and learn from a wider array of people and situations. Some people, however, have difficulty reading the social cues others are communicating to them. This can have an impact on their relationships with others.

Fortunately, with professional help, social skills can improve, often through a process called social skills therapy. Social skills therapy is typically done weekly in small groups. Many times social workers, psychologists, or speech therapists lead the group members through a variety of carefully chosen activities geared towards highlighting a specific social skill area.

With school age children, many of these activities take the form of games. “Freeze dancing,” for example, teaches youngsters self control over their bodies and their impulses. “Show and tell” allows for practicing of turn-taking and the development of communication skills through explaining a favorite toy to the group. Social etiquette skills can be addressed through something as simple as eating a snack together. Children and adults can learn the art of “small talk” and chatting while sharing a small meal—another social skill. Board games or other group projects bring participants together to practice skills such as problem-solving, cooperation, and compromise. Role-plays are also key in teaching social skills to children, adolescents, and young adults. This technique and other approaches offer opportunities to practice and learn appropriate greetings, giving of compliments, talking in turn, and showing empathy.

In essence, social skills groups are a bit like mini social laboratories. Participants discover and learn skills they may not have recognized on their own. They are able to practice and experiment with methods to cultivate those skills within a small, safe environment. The broader objective of social skills therapy is to help individuals, over time and with the support of parents and teachers, incorporate better social skills into daily situations.

Social Skills Programs at JSSA

JSSA has developed its own method of social skills therapy which is offered year round in groups for elementary schoolers, middle schoolers, teenagers, and young adults ages 19 to 30. Groups run at various times at the Ina Kay Building in Fallsgrove, Rockville, and at JSSA’s Fairfax office. For children, JSSA also offers a summer day camp with the Jewish Community Center of Northern Virginia in Fairfax that focuses on social skills development within a recreational camp setting. This summer in Rockville at JSSA’s Fallsgrove office, a late afternoon enrichment group for children, the BFF (Building and Fostering Friendships) Club, will be offered and will focus on teaching social skills.

In addition, JSSA offers Going Places, monthly social clubs with group recreational activities organized and supervised by professional staff. Going Places provides a range of socialization opportunities—from theater excursions to pool parties—all of which provide an environment for group members to practice social skills in the natural environment of their community. Due to the great success of JSSA’s first social club for young adults with Asperger’s syndrome (offered in Northern Virginia), two Rockville programs—one for teens and one for young adults—will also be offered beginning this January.

Jamell White, LCSW-C is clinical director of special needs and deaf services at JSSA. For more information about JSSA’s broad range of social skills therapy group offerings for children, teens and young adults, please visit www.jssa.org

Sunday, July 11, 2010

Event Summary for the Week of July 12, 2010

Can you help me out by filling out this very quick survey? If you fill it out and leave your email address there or in my comment section here, you will be entered to win a $20 gift card from a store mostly of your choice. Full details here.

Interagency Autism Coordinating Committee Meeting

The Interagency Autism Coordinating Committee (IACC) will hold a full committee meeting on July 16 from 10 a.m. to 5 p.m. at the Bethesda Marriott (5151 Pooks Hill Road) in Bethesda.

The purpose of the meeting is to listen to presentations on various aspects of ASD research and services and to discuss plans for the annual update of the IACC Strategic Plan for Austism Spectrum Disorders Research.

Guest speakers include Dr. Michael Ganz, Dr. Isaac Pessah, Dr. Philip Landrigan, Dr. Eric Courchesne, Ms. Denise Resnik, and Dr. Carol Quirk.

This meeting is open to the pubic. Pre-registration is recommended. Seating is limited to the room capacity and seats are on a first come, first served basis with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible by videocast and conference call. To access the conference call, call 888-577-8995 and use the access code 1991506.

LDAMC: Learning Styles

The LDAMC Parent Connection, a support group for parents of students with learning disabilities will hold a meeting on July 13 from 7 to 8:30 p.m.

This meeting will include a mini-presentation on Learning Styles, what they are and how they can be used to enhance learning. Bonnie Massimino, a professional educational therapist, learning specialist, and Maryland certified reading specialist and special education teacher, will facilitate this group.

The discussion will take place at the Olney LIbrary (3500 Olney-Laytonsville Road) in Olney.

RSVP to ldamc@ldamc.org or 301-933-1076.

Fore Autism Golf Tournament

The Autism Science Foundation and TPC Avenel in Potomac will be sponsoring the Fore Autism Golf Tournament on Monday, August 2.

This event will begin at 10 a.m. with breakfast and putting practice, followed by a noon tee time. After 18 holes of golf, guests will enjoy cocktails and a gala dinner, with dinner remarks by Dr. Tom Insel, Director of the National Institute of Mental Health.

There will be many fun activities during the day including a "hole in one" contest for a Mercedes CLK, a putting contest, a "longest drive" contest, and a silent auction with great, once-in-a-lifetime sports packages available.

Proceeds from the event will be used to support researchers in submitting and sharing important autism research date via the National Database for Autism Research (NDAR). The Fore Autism organizers are seeking sponsors for the event.

You can register online for the event. A foursome, including the gala dinner, costs $2000; one golfer, including the gala dinner, costs $500; and a ticket for the dinner only is $250. The golf course is located at 10000 Oaklyn Drive in Potomac.

Sunday, July 4, 2010

Sensory Friendly Films: What They're Like

Have you ever wanted to go to AMC Entertainment and the Autism Society's sensory-friendly films but didn't know what to expect? AutMont's close friend A Lettered Woman went to the most recent showing and reported back on how the experience went for her.

Have you been? What did you think? Leave your own experiences and suggestions for attending in the comments.

Last weekend, my boyfriend and I took our three kids (two neurotypicals, one non-verbal autistic) to the sensory friendly showing of Toy Story 3 at Rio Gaithersburg. Somehow, 10 a.m. was earlier than we thought; it was tough getting there on time, but that's just us. I was stressed out by knowing that we didn't have the cushion time of previews in case we were late.

We did miss the opening of the cartoon short that played before the film, but that was fine. We still liked it. There was a pretty good turn out—we were able to find seats easily, but people trickled in for several minutes after the start of the film and the theater became full.

I expected the lights to be a little higher, but it was still dark, maybe just one level up from full darkness. And at first I was like, really? Is this the sensory friendly showing? But as time passed, and kids started to make noise, I realized that at times I had to strain to hear the movie over the hum of the audience.

For real, it was the loudest audience I've ever heard. But that was okay. It was okay when my boyfriend's son vocalized and when my own chatty five year old had a lot to say about the movie. There was a steady hum of squeaks, squwaks, and grunts throughout.

By the second half of the film, there was a gang of little kids running up and down in front of the screen, and there was a semi-agitated kid pacing and stimming on the steps next to our seats. It was all okay. My boyfriend's son got a bit agitated during the suspenseful part of the movie—who knew how scary pink teddy bears could be? So the two of them took a break and stood at the top of the stadium seating. The pacing kid hung out with them. It was kinda nice.

To sum up, Toy Story 3: Awesome movie, a little scarier than necessary. It involved a menacing teddy bear, a scary monkey and potential doom in a garbage dump.

Sensory Friendly Film: A safe place to take your kid if you have a hard time in public. It's cheap enough that you don't feel terrible about leaving early. No one will give you a dirty look if your kid is noisy or active. If there's a tantrum, no biggie, no need to be embarrassed, just exit, calm down and come back in, or don't. Easy Peasy. However, this is still a movie theater, it's still pretty dark with a big colorful screen and fairly dark lighting.

Event Summary for the Week of July 5, 2010

Check out all of the amazing events on the AutMont Calendar for this week!

Thursday, July 8:

Family Anger Issues (first of a four-part class)

Friday, July 9:


Up for Discussion on AutMont:


*****

Do you know of another event? Leave details in the comments!

Families Together Webinars

Families Together is offering two more seminars this month, each of which has a $50 per site registration fee with no limit on the number of participants at each site.

July 23 at 1:30-4:30 p.m. Eastern: ABCs of Homework for Teachers and Parents Teaching children how to do homework can be as easy as A-B-C. Take part in this webinar and learn these practical and useful tips that can really help children be successful with school work. Chris Curry will be presenting. Register online.

July 27 at 1-4 p.m. Eastern: Children Who Challenge: Young Children Workshop This workshop gives professionals and parents strategies for creating environments that help children who are at risk due to behavior problems. Chris Curry will present. Register online.

Sensory Friendly Film: Despicable Me

Enjoy a screening of Despicable Me in a sensory friendly environment on June 17 at 10 a.m.

AMC Entertainment and the Autism Society have teamed up to provide a mellower setting for families affected by autism and other disabilities. The movie auditorium will have its lights brought up and the sound turned down, families can bring in their own GFCF snacks, and no previews or ads will be shown before the movies. Audience members are also welcome to get up and move or vocalize. (Unless the safety of the audience is questioned.)

Tickets cost between $4 and $6 depending on the theater. The AMC Rio Cinemas 18 in Gaithersburg (9811 Washingtonian Blvd.) is one of the theaters that participates.