Wednesday, November 12, 2014

Coming Soon: Next Steps into Adulthood!

The Center for Autism Research (CAR) is excited to announce that we have received a grant from Autism Speaks™ to develop Next Steps into Adulthood. The one year grant will provide the funding needed to expand our already successful Next Steps Workshop Series, which currently features Next Steps Workshop for Families of Young Children, Next Steps Workshop for Professionals, and Next Steps into Adolescence.

The original Next Steps workshop was developed over ten years ago for families whose young children were recently diagnosed with Autism Spectrum Disorder (ASD). The workshop covers what ASD is, what therapies and services are available for children, what supports are available for parents, and more.

CAR social worker and workshop organizer Gail Stein, LCSW says, “Next Steps was originally developed for families whose children were recently given an ASD diagnosis because that’s where the greatest need seemed to be. These families were entering a world that they needed information about. But then we were seeing tweens and teens in the clinic whose parents really wanted guidance on how to navigate the adolescent years and middle school, so we developed Next Steps into Adolescence.”

Those CAR research participants who were in their early teens a few years ago are now quickly approaching adulthood, and the reality is ASD is a lifelong diagnosis that requires a lifelong plan.

According to Stein, “Ideally, families should begin thinking about what their child’s post-education plans are by about 14 years of age.”

There are a multitude of questions to consider: Will the student graduate at 18 or remain in the secondary education system until age 21? Is a vocational program appropriate? Will the child attend college? How much support does the individual need on a day to day basis? Where will the individual live after high school?

As Stein explains, “It’s a very overwhelming list for parents. The adult system is not mandated, so it’s very fragmented. Navigating the adult transition process is difficult even for the most experienced and knowledgeable parent.”

Because the topic of adulthood is so broad, Next Steps into Adulthood will have a different format from the other workshops, which are one day sessions. The Adulthood workshop will feature eight sessions over a two month period. We plan to develop the content with the help of adults with ASD, their families, and professionals who support them.

Developing this content will take time, so we do not yet have a date for the workshop launch. Please keep an eye out for messages from our email listserv (listserv sign up box on right-hand side of screen) or our Facebook page for more info!

Monday, February 17, 2014

Spring 2014 Autism Events

Outreach Coordinator
Center for Autism Research

It may feel like this winter is never going to end, but believe it or not, spring is just over a month away! March, April, and May are chock-full of events for the Greater Philadelphia autism community. Here is a sampling of what’s coming up!

Wednesday, February 26th
Hosted by the Center for Autism Research at CHOP

Friday, March 14th and Saturday, March 15th
Hosted by  the Asperger & Autism Alliance for Greater Philadelphia (ASCEND) and Austill’s Rehabilitation Services, Inc.

Monday, March 24th
Hosted by the Center for Autism Research at CHOP

Wednesday, March 26th
Hosted by the Montgomery County Intermediate Unit

Thursday, March 27th
Hosted by the Center for Autism Research at CHOP

Saturday, March 29th
Hosted by the Bucks County Autism Support Coalition

Sunday, March 30th
Hosted by the Asperger Autism Spectrum Education Network

Wednesday, April 2nd
Resolution 62/139 of the United Nations General Assembly

Friday, April 4th
7th Annual Autism Expo
Hosted by the Philadelphia School District

Saturday, April 5th
Hosted by Variety-The Children’s Charity

Saturday, April 12th
Hosted by Autism Speaks

Sunday, April 13th
Hosted by the Autism Society of Greater Philadelphia

Friday, April 18th
Hosted by Variety-The Children’s Charity

Wednesday, April 23rd
Autism Awareness Fair
Hosted by the Upper Darby School District at Primos Elementary School
Thursday, April 24th
3rd Annual Autism Awareness Month Resource Fair
Hosted by the Delaware County Intermediate Unit (DCIU)
Friday, April 25th
Hosted by Autism Speaks

Saturday, April 26th
Hosted by the Autism Institute of Gwynedd Mercy University

Building Bridges for Transitions and Risk Management-2014 ASD Conference
Hosted by LaSalle University and Foundations Behavioral Health
Sunday, April 27th
Hosted by Variety-The Children’s Charity

Autism Awareness Sunday
Hosted by Temple Lutheran Church
Wednesday, April 30th
Hosted by the Center for Autism Research at CHOP

Saturday, May 17th
Hosted by Autism Speaks

Friday, May 30th
Hosted by the Center for Autism Research at CHOP

Sunday, June 1st
Hosted by Variety-The Children’s Charity

Tuesday, June 10th through Thursday, June 12th
Hosted by the Pennsylvania Department of Public Welfare’s Bureau of Autism Services

Wednesday, October 9, 2013

The Infant Sibling Study: A Family's Experience

The Mays participating in IBIS

Nicole L. May

My name is Nicole L. May. Our family recently took part in the Infant Sibling Study (IBIS) at the Center for Autism Research (CAR) at The Children’s Hospital of Philadelphia (CHOP). We found out about IBIS when one of our other children was enrolled in a different study at CAR. IBIS enrolls infant siblings of children with Autism Spectrum Disorder (ASD) and observes and tests these siblings throughout the first three years of their lives. Although I was concerned about being able to make the appointments over a three year period, my husband and I decided to join the study with our youngest son Nicholas (Nicky) because we wanted to do everything we could to help with autism research. Additionally, because we have three other sons with ASD, we knew the study would help us determine for sure whether Nicky did too. Knowing whether Nicky had ASD like his other three brothers was important, so I put everything else aside and made time for the phone interviews, MRI appointments, as well as developmental testing visits at the center.

Our research experience has been amazing! So many doors have opened since we participated in IBIS! We found out at an early age that Nicky also has ASD, but that knowledge changed everything. All of the doctors and researchers involved were able to make recommendations that have helped Nicky grow socially in a very short period of time. We found a new developmental pediatrician and made educational decisions regarding Nicky’s current Individualized Education Plan (IEP) with the help of the research team.

I would encourage other families to get involved in IBIS because the connections I have made with other families and the support from the research team alone is enough reason to participate in the studies CAR provides. We have four sons on the autism spectrum, and we know more about the resources available for our family since we participated in IBIS and other research studies at CAR. We are very thankful for the experience and will continue to participate in future studies so that we can help other families!

Wednesday, April 17, 2013

4th Annual Huddle Up for Autism

Outreach Coordinator
Center for Autism Research

This year, Mother Nature graced us with a beautiful day on April 14th for the 4th Annual Huddle Up for Autism hosted by the Center for Autism Research (CAR) at CHOP and the Philadelphia Eagles!

Tickets for this carnival-style family fun day geared towards families who have children diagnosed with an autism spectrum disorder (ASD) sold out in less than a week this year!

This is an event that many families look forward to every year because of the unique opportunities it affords their children. Attendees can run out onto the stadium field and see themselves on the jumbotron, interact with current Eagles players, participate in a junior cheer clinic with the Eagles cheerleaders, take a tour of the Eagles locker room, run a football drill with Temple football players, or play a game of life-sized Angry Birds! We also have bouncy houses, face painters, balloon artists, magicians, the Philadelphia Zoo’s Zoo on Wheels, an interactive experience with staff from the Franklin Institute, and much more!

We pull out all the stops to help make this day as easy as possible for families who have children with ASD. Event staff strive to minimize the wait time in lines, gluten-free food is available, and quiet rooms are open for kids who are overstimulated and need a break from the event. Additionally, Child Specialists who are trained to work with kids with ASD wander around the stadium armed with stickers, temporary tattoos, small toys, and ear plugs. They look for children who are struggling and try to assist in any way they can.

We received lots of positive feedback from this year’s event! To quote from one mom who posted on CAR’s Facebook page, “We usually have to leave public events early as it is too much for my son. I was afraid this would be the case, but everyone was so nice and helpful, we were able to get through everything we wanted with no problem. Had a wonderful time, thank you and all your volunteers!!!”

Another mom sent her thanks along too, “Thank you so much for having this event! My family thoroughly enjoyed it. It was well run, organized, lines moved fast & the staff was awesome. It was our first time coming & our ASD son was having such a great time, he was crying when we were leaving. THAT means he enjoyed it, which a lot of times doesn't happen at events that have the potential to be overwhelming. The ease & flow of the experience allowed it to be enjoyable for him. MANY THANKS!”

We appreciate any and all feedback from this event and are happy to hear families enjoyed it as much as we did!

Last  year, we introduced a fundraising program for Huddle Up to benefit research at CAR. We are pleased to announce that YOU raised around $34,000 this year! This is a huge accomplishment!!! The money will be used to help CAR further its research into the biological causes of ASD.

We would especially like to recognize and thank our top three fundraisers:
  1. Megan Donegan raised $2,500 and received two pre-game field passes and two tickets to a Philadelphia Eagles home game for the 2013-2014 season.  Megan’s Game Day Experience also includes a parking pass and a $20 voucher to be used towards concessions or merchandise.
  2. Kevin Hitt raised $2,340 and received an autographed helmet by Eagles running back, LeSean “Shady” McCoy.
  3. Michelle Goldberg raised $2,095 and will join Eagles great and alum, Harold Carmichael for a behind-the-scenes tour of the Eagles practice facility, The NovaCare Complex.
We here at the Center for Autism Research look forward this event to every year, and we truly think this year was the best one yet!
If you haven't made a donation to CAR and would like to do so, you can visit Huddle Up for Autism's donation page here.

To view more photos from the event, please visit CAR’s Facebook page! We also encourage you to post any photos that you took at Huddle Up to our page as well!