Online Wiki offers information, comfort and community for families facing autism transition

Apr 22 2010

Among the many challenges families caring for individuals with autism spectrum disorders face, perhaps the most difficult of all arrive "when the school bus stops." When a child with autism ages out of systems and supports designed for those up to ages 18-21, families face the daunting challenge of finding new resources and creating new communities for their children. Unfortunately, finding necessary services and supports can be very difficult.

To help support these families, Devereux, one of the nation's premier behavioral health organizations, has launched an important online resource. The newly launched Devereux 'Autism Transition Handbook,' takes the form of a Wiki, an online, collaborative, open-source resource that provides families and individuals impacted by autism spectrum disorders with information to help them move through "transition."  It can be found at www.autismhandbook.org.  

In the autism community, transition comprises the time period when individuals with autism and their families prepare to age out of the system of supports for children, and prepare for post-secondary school life including higher education, employment, community involvement and independent living. This can be a very challenging time for families – both in finding the resources they need, and finding the funding to support them.

"Many families believe that their children with autism will qualify for funded services after the age of 21," said Dr. Todd Harris, Director, Devereux CARES and Devereux Pennsylvania's Division of Autism Services.  "Unfortunately, virtually all entitlements are gone at this point."  

The goal of this digital tool is to establish a collaborative community of parents, professionals and advocates, which, through the open-source vehicle of the Wiki, will add relevant and timely content to the site, ensuring individuals with autism spectrum disorders and their families have access to the most current and comprehensive information on autism transition services in Pennsylvania.  

"This is a great first step in using technology to provide families with the critical information they need related to autism transition," said Robert Kreider, President and CEO of Devereux.  "Through this Wiki, we can virtually join families with each other and the professional community as they go through this process and provide them with much of the help they need.  I encourage parents of autistic children and professionals who serve the autism community to participate in this effort."

While Devereux has created the Wiki and supplied the original base of information, future content will come from numerous sources including parents, public officials, and legal, medical and financial professionals who serve the autism community, and even other direct service providers.  "We are all on the same team and have the same goal," continued Harris, "to serve families and individuals impacted by autism spectrum disorders."  

The Wiki will contain information on everything from laws affecting the autism community to information on social security and healthcare to community living, financial planning, and family support, education and advocacy.  While much of the content in the handbook is Pennsylvania- specific, there is a good deal of general autism transition information that will interest a broader audience.  Individuals who would like to provide content can email [email protected] to obtain editing privileges.

"One of the most exciting things about this initiative is that this is only the beginning," adds Kreider. "This resource will continue to grow in quality and usefulness as more and more families and professionals engage in it."  

"Parents can take comfort in knowing when the school bus stops, there is a place they can go to get credible information on transition," concluded Harris.  "Our hope is they will have peace of mind knowing they are part of an online community that offers information they can trust on transition services in Pennsylvania."