Monday, December 17, 2012

Putting the Pieces Back Together: The Aftermath of the Newtown Tragedy

Our thoughts and hearts are with Sandy Hook Elementary School and the Newtown, CT community as they cope with the tragedy of last week’s shooting. While nothing authoritative has been made public about Adam Lanza’s mental health, there is speculation that he may have been struggling with several psychiatric disorders, including an autism spectrum disorder. This has raised concern about a possible connection between autism spectrum disorders and violence. Autism spectrum disorders (ASD) are characterized by difficulty with social communication, building and maintaining relationships, intense interests, and repetitive behaviors. While individuals with ASD do sometimes show self-injurious behaviors or episodes of outward aggression, there is not a higher rate of planned violence, delusions, hallucinations, or psychotic symptoms than in the general population.

The tragic event that occurred in our country last week has left a community reeling to provide support for the families, students, and teachers who were directly affected. In an effort to try to understand such a shocking event, we believe it is critical to recognize that the actions of one individual should not translate to widespread assumptions about the autism community or any other group of individuals with mental health disorders. The autism community is devoted to advocating for medical, educational, and social equality for its community members. We hope this advocacy will not suffer any setback as ASD is highlighted in media coverage related to this devastating event.

The Center for Autism Research and CHOP are committed to continuing to support the autism community. We offer the following information and resources for helping individuals with ASD process what has occurred in Newtown, CT:

What resources are available to help parents discuss the recent events with their own children?

Some, but not all, individuals with ASD may benefit from additional support and guidance. Consider the following:
  • If your children are old enough to be aware of their ASD diagnosis, they may have new questions about what it means for them in everyday life, and in relation to the shooting. They may also hear their peers at school discussing ASDs more frequently. Encourage your children to share their thoughts and concerns with you, their teacher(s), and their doctors/therapists.
  • Individuals with ASD can sometimes show anxiety in different ways than would be expected. Be aware of changes in your child’s behavior or usual routines (compared to their own baseline of functioning) that may represent increased worry and anxiety. Just like any other child, aspects of life that are more challenging for your child with ASD may be even more difficult during this time. Be sensitive to your child’s worries while maintaining regular routines that will offer structure and help your child feel safe.
  • Many children with ASD are prone to asking repetitive questions about particular topics, especially if they are anxiety-provoking. Should your child “get stuck” on talking about the shooting and wanting to gain additional information, provide them with facts that will pacify the interest while also limiting exposure to media coverage and redirecting their attention to a different topic/activity. Also, encourage your child to focus on the “helpers” involved in the event (e.g., paramedics, firefighters) and what they can do individually to help (e.g., send cards to children at the Sandy Hook Elementary School, have them help you address the envelope for sending a donation).
  • As a parent of a child with an ASD (or any child), be sure to take care of your own emotional needs and responses to these events. Seek out other adults and support networks/groups to help you process your own reactions and the experiences of supporting your children during these times.

What can parents do if they are worried about their child?
  • Discuss your concerns with your current mental health care provider. If you do not have a current provider, contact your pediatrician for referral resources.
  • Stay in communication with your child’s school. Share your concerns with your child’s teacher and school counselor/psychologist.
  • As would be the case with any child, if you have urgent concerns about your child’s safety or well-being, call 911 or bring your child to the emergency room. If your child has an autism spectrum disorder or other developmental disorder, be sure to alert law enforcement officials and healthcare providers of your child’s diagnosis in order to improve communication and specialized care.

Friday, May 18, 2012

"Losing" an Autism Diagnosis

A study out of the Netherlands found that 26% of a sample of 170 children who were diagnosed with high functioning autism as children no longer met diagnostic criteria in adolescence. Deb Dunn, Outreach Director for the Center for Autism Research, discusses the implications of this research on "optimal outcome."

Thursday, May 17, 2012

A Parent's Guide to IMFAR

Deb Dunn, CAR's outreach director and parent of two kids diagnosed with ASD, discusses the International Meeting for Autism Research (IMFAR) being held this week in Toronto. Part 1 in a series on the conference.

Monday, May 7, 2012

Huddle Up for Autism 2012 Recap!

autismMatch Family Consultant
Center for Autism Research

The rain on Sunday, April 22nd didn't dampen spirits as the Center for Autism Research (CAR) and the Philadelphia Eagles opened the doors of Lincoln Financial Field to host the 3rd Annual Huddle Up for Autism!

Several thousand people traveled to South Philadelphia for the event, which is geared towards families who have children with autism spectrum disorders (ASDs). This is a great day for families who aren’t normally able to attend Philly sporting events because of the sensory sensitivities that often accompany ASD. Said one mom, “My daughter loves football but can never get to a game because it’s so loud, this was the perfect opportunity for her to get to the stadium...And meet cheerleaders!”
There are tons of fun activities for kids to explore at Huddle Up, including: face painting, moon bounces, making your own stress balls, balloon artists, sand art, spin art, magic shows, computer games, etc.

This year, we were very excited to have an Eagles statistician put on a special presentation for kids who have a special interest in math and love Philly sports! He discussed how the team uses stats to prepare for games, the draft, and much more. 

As always, Eagles personalities were on hand to welcome families to Lincoln Financial Field. SWOOP, Eagles cheerleaders, and several Eagles players happily signed autographs and took photos with fans young and old. 

A brand new aspect to Huddle Up this year was that families had the opportunity to fundraise on behalf of CAR to win special prizes. We are absolutely ecstatic to announce that, in the first year of fundraising, you raised over $30,000! On behalf of our center’s staff, THANK YOU! This money will directly benefit CAR’s many research programs!

We would especially like to thank and congratulate our top three fundraisers:
1. Courtney Dwyer raised $4,000 and won four tickets and four pre-game field passes to the Philadelphia Eagles vs. Dallas Cowboys game at Lincoln Financial Field!

2. James Deckman raised $3,355 and won four VIP passes to the 2012 Philadelphia Eagles training camp at Lehigh University!

3. Kevin Simpson raised $3,000 and won an autographed authentic Eagles jersey!

Staff from CAR and the Philadelphia Eagles had a great time on event day! We hope you did too!

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!

Wednesday, March 7, 2012

Upcoming Autism Awareness Events

autismMatch Family Consultant
Center for Autism Research

Things have been busy here at the Center for Autism Research (CAR)! This can mean only one thing - April's Autism Awareness Month is quickly approaching!

Many organizations in the Greater Philadelphia region plan to host conferences, walks, and family fun days during the next two months. These are great opportunities to expand your knowledge about the autism community and to meet families who have lives very similar to your own! 

I hope you will be able to attend at least one of these great events. Chances are, you will see a friendly face from CAR's outreach team there! 

Saturday, March 17th
Hosted by Autism Sharing and Parenting, Inc.

Thursday, March 22nd
Hosted by the Center for Autism Research at CHOP

Saturday, March 24th
Hosted by the Bucks County Autism Support Coalition (BCASC) 

Sunday, March 25th
Hosted by Sharing and Caring of Bucks County 

Saturday, March 31st
Family Fun Day (Games, Face Painting, Indoor Swimming!)
Hosted by Devereux Community Services and Autism Speaks Greater Delaware Valley Chapter
To RSVP, please contact Amy Kelly at 610-710-4041 or

Sunday, April 1st
Hosted by the Variety Club 

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

Thursday, April 5th
Hosted by the Center for Autism Research at CHOP 

Saturday, April 7th
Hosted by the Variety Club

Thursday, April 12th 
Hosted by the Center for Autism Research at CHOP

Saturday, April 14th
Hosted by Gwynedd-Mercy College 

Sunday, April 15th
Hosted by the Greater Philadelphia Chapter of the Autism Society of America 

Hosted by the Variety Club  

Friday, April 20th
Hosted by the School District of Philadelphia

Saturday, April 21st
Hosted by the Variety Club

Hosted by Autism Speaks

Sunday, April 22nd
Hosted by the Center for Autism Research at CHOP and the Philadelphia Eagles   

Tuesday, April 24th
Hosted by Camphill Special School 

Friday, April 27th
Hosted by the Philadelphia Phillies

Saturday, April 28th
Hosted by the Bucks County Autism Support Coalition (BCASC)   

Sunday, April 29th
Hosted by the Asperger Syndrome Education Network (ASPEN) 

Tuesday, May 1st
Hosted by Foundations Community Partnership

Friday, May 4th
Hosted by Green Tree Partnerships and La Salle University

Saturday, May 5th
Hosted by the Bucks County Autism Support Coalition (BCASC) 

Saturday, May 12th
Hosted by the Bucks County Autism Support Coalition (BCASC) 

Saturday, May 19th
Hosted by Autism Speaks 

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

Thursday, May 31st 
Lecture: Peter Szatmari, PhD, Professor, Vice-Chair of Research, Head of Division of Child Psychiatry, McMaster University
Hosted by the Center for Autism Research at CHOP