Exective Director of Asperger's Association Visits White House

Autism experts gathered for World Autism Day April 2

WATERTOWN, MA – Experts met at the White House to mark World Autism Day on April 2, 2010, to discuss current the efforts and priorities of the Obama Administration with regard to autism research. The Asperger’s Association of New England’s (AANE) Executive Director Dania Jekel represented AANE as one of 20 organizations invited to the White House.

Asperger’s Syndrome is an Autism Spectrum Disorders (ASD) diagnosis. ASDs are a complex set of neurodevelopmental disorders, usually appearing within the first three years of life and impacting a child’s communication and social interaction, and often resulting in stereotypic patterns of behavior. ASDs include Pervasive Developmental Disorder, Not Otherwise Specified (PDD/NOS); Autistic Disorder, and Asperger’s Syndrome, and are estimated to occur in 1 in 100 8-year old children in the United States (CDC 2009).

Jekel articulated AANE’s response to the proposed changes to the Diagnostic and Statistical Manual of Mental Disorders, DSM-5, which proposes to eliminate the diagnosis of Asperger’s Syndrome (AS); the need for families to have coordinated support and information, and the need for support and information for teens and adults of all ages with AS, especially in the area of employment. “We take pride in being one of a very few autism organizations invited to the White House on World Autism Day” said Jekel. “AANE was the only organization of the 20 attending that represented Asperger Syndrome.”

Other participating experts included:

• Melody Barnes, Director of President Obama’s Domestic Policy Council
• Dr. Edwin Trevathan, Director of the CDC's National Center on Birth Defects and Developmental Disabilities
• Dr. Thomas Insel, Director of the National Institute for Mental Health
• Dr. Peter Van Dyck, Associate Administrator for Maternal and Child Health
• Kareem Dale, Special Assistant to the President for Disability Policy
  

AANE is the largest independent organization for Asperger’s Syndrome (AS) in the nation and does not receive any state or federal funding. Their mission is to foster awareness, respect, acceptance, and support for individuals with AS and related conditions and their families.

To visit their website, click here.

Focus on Autism Spectrum Disorders: Realizing the Full Potential of Students with Asperger's Syndrome

Autism Spectrum Disorders (ASD) experts came together on Saturday, April 10, 2010 at Lesley University in to provide a day of professional development, training and information on Asperger’s Syndrome (AS) to educators, specialists and parents as a charity benefit for the Asperger's Association of New England (AANE), based in Watertown, MA. This was the fourth event in the speaker series, Focus on Autism Spectrum Disorders, hosted by the Severe Disabilities Graduate Education program at Lesley University. AANE is the largest independent organization for AS in the nation, but does not receive any state or federal funding. The event raised over $10,000 for the organization.

The speaker series was developed to bring awareness to the need for increased training for educators and professionals working with individuals with an autism spectrum disorder. Advocacy is an initiative of the Severe Disabilities program, including support for non-profit community organizations, such as AANE, that in turn support families, professionals and schools, particularly in these challenging economic times. This serves as a model and support to teachers trained in the program, as a way to help them to both identify community agencies who can support their work in the classroom and support families and students out of school time and to recognize the importance of support for these agencies during their professional careers.

In recognition that the cost of training is sometimes an impediment to teachers, parents and other professionals, professional development events hosted by the Severe Disabilities program are offered at low-cost, a position adopted from The Center for Special Education at Lesley University.

Participating April 10 conference experts included:

Ellen Korin, M.Ed., author of Asperger Syndrome: An Owner's Manual, and Asperger’s Syndrome: An Owner’s Manual II, which recently received a NAPPA Honors Award from the National Parenting Publications Awards

Dr. Stephen Shore, author of numerous books, including Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome and the critically acclaimed Understanding Autism for Dummies

Dr. Karen Levine, author of Replays: Using Play to Enhance Emotional And Behavioral Development for Children With Autism Spectrum Disorders

Dr. Ross Greene, author of The Explosive Child and Lost at School

All four experts waived all speaking and related fees to support the effort.

Two previous events were held last year in collaboration with AANE, including two sessions on Individualized Education Programs (IEP). A May 5, 2009 session included a panel of parents who have served on teams to develop legally mandated Individualized Education Programs (IEP) for children with ASD. A June 2, 2009 session, jointly created and presented by Jean Stern, director of Children’s Services for AANE, and Elizabeth Stringer Keefe, focused on writing a legally compliant, appropriate IEP for a student with an ASD.

Dania Jekel is Executive Director of AANE, whose mission is to provide quality and individualized information to parents and professionals, through the provision of innovative services such as the first ever conference on Anxiety and Asperger’s Syndrome, and a new LifeMAP program, which provides one-to-one coaching to adults with Asperger’s.

“It is important for us to partner with educational institutions like Lesley University, provider organizations and professionals to strengthen services to those affected by AS,” Jekel said. “In this fiscal time it is particularly important that we expand our revenue sources, which come from families, foundation grants, conferences and memberships, to serve the increased numbers of children and adults diagnosed with AS.”

AANE is responding to the proposed changes to the Diagnostic and Statistical Manual of Mental Disorders 5th Edition (DSM-5), which proposes to subsume the diagnosis of Asperger's Disorder into a broader category, Autistic Disorder through continued advocacy and a position paper, available here. Ms. Jekel visited the White House last week at President Obama's request with a group of other experts on ASD.

The April 10 event was attended by Jean Stern (AANE), who also provided commentary on the proposed changes to the DSM-5; and staffed by volunteers, including Karen Zimbrich, Associate Director of the Center for Special Education; Christina Chandler, Assistant Director of Academic Advising and Student Services at Lesley University; two alumni of the Severe Disabilities Program, Teresa Robinson and Lexy Goldberger; and current students Kelly Atherton, Elizabeth Donghue, Athena Fazio, Nina Alberg and Emily Lapean.