In 2002, when The Daniel Jordan Fiddle Foundation developed its first three programs for adolescents and adults with Autism Spectrum Disorder (ASD) and awarded grants to support them, no one in the autism community was talking about adults with autism. That was the point. During my son Danny’s lifetime, I had realized that after he aged out of the educational system entitlements mandated by the Individuals with Disabilities Education Act (IDEA), there were no federal or state laws specifically mandating that he would be entitled to the supports and services he would need in adulthood. And, as I researched to learn what, if any programs existed in the United States that could provide residential, vocational, recreational and educational opportunities for him, I came up with merely a handful of options and none that specifically related to ASD. A few years later, friends and family encouraged me to continue to focus on ASD after Danny’s untimely death at age 9, and I knew that the not-for-profit organization bearing his name would have to focus on adults, because no one else was.
During the past seven years much has changed for the better in the adult world of ASD. I would like to credit the dedicated Board of Trustees and Advisors of our national autism organization for some of those changes. The Daniel Jordan Fiddle Foundation has developed and supported programs in rural, urban and suburban settings throughout the United States that focus on young adults transitioning from school to adult life and adults as they follow paths to live, work and recreate in communities throughout the country. When I look at the map and see all the ground our small, all-volunteer organization has covered, I feel grateful to have been inspired by individuals with ASD, their families and those who serve them so that we can create more of what I had wanted for Danny: to have suitable, sustainable and stimulating opportunities to participate in and contribute to community life.
What is also gratifying is to now see that others in the autism community are starting to focus on the question The Daniel Jordan Fiddle Foundation asked in 2002 has been answering ever since, “What is going to happen to my child when he or she becomes an adult?” The topic of adults on the spectrum is now part of the conversation among autism organizations and has resulted in an exciting collaborative initiative called, Advancing Futures for Adults with Autism, which will host nationwide town hall meetings on November 13, 2009 to develop a policy agenda to address the needs of adults. The Daniel Jordan Fiddle Foundation is a member of the Steering Committee for this effort, composed of a powerhouse of autism organizations and advocates, and all involved are committed to engaging the voices of concerned Americans on this topic.
The topic of adults and ASD has finally become a part of our national and state agendas as legislators across the country are initiating and enacting bills that recognize the need to focus on programs and services beyond childhood. The Autism Treatment Acceleration Act of 2009, a bill, recently introduced in the Senate and House of Representatives, includes language that would create a demonstration project to provide a full array of services to adults with ASD to improve their quality of life and enable them to live as independently as possible. This important inclusion of adult issues in a multi-faceted bill aimed at improving the lives of individuals with ASD is a major step forward in promoting awareness that autism is a life span challenge.
In many states, legislators are also beginning to realize that the growing population of children with ASD is rapidly aging to adulthood and that it is imperative to identify and address the issues that not only affect their lives but will have an enormous impact on society at large. The fact that adult ASD will incredibly impact all citizens should be apparent by the numbers of those currently diagnosed; it is well reported that 1 in 150 children have ASD, and in our organization’s home state, New Jersey, 1 in 94 are on the autism spectrum. New Jersey legislators like Assembly Speaker, Joseph J. Roberts, Jr., State Senators, Loretta Weinberg and Joseph Vitale and Assemblywoman, Joan Voss have spearheaded important legislation that created The Adults with Autism Task Force that was signed into law by Governor Corzine. The Task Force, on which I am a member, was convened last year with the mandate to provide an actionable plan to address the needs of adults.
The report that was presented to Governor Corzine and legislators in June of 2009 outlined the major issues that think tanks around the country have also identified, illustrating that many are thinking along the same lines.
Some of the key needs relating to adults with ASD that were put forth by the New Jersey Task Force and other task forces, think tanks and symposia relating to adults include:
- The need for effective and coordinated transition planning guided by the individual with ASD, their parents/caregivers and autism trained professionals; this must begin early in the education process.
- The need for a variety of day programs that provide person centered training, autism specific support systems and intensive life skills curriculum that fosters independence
- The need for college support and opportunities for those pursuing that path
- The need for a variety of safe and sustainable residential options that enhance participation in community life
- The need for a variety of employment opportunities that focus on the strengths and talents of adults with ASD and the availability of a support system to assure their sustainability and success
- The need to enhance the health and wellness of adults through fulfilling and varied recreational endeavors
- The need to educate the community about the diversity of the adult ASD population so as to create more awareness, opportunities and support for them
- The need to address issues relating to community life and the safety of adults with ASD such as transportation, sexuality, marriage, legal matters, faith-community participation, aging
These issues are ones that The Daniel Jordan Fiddle Foundation has been addressing and will continue to address in the days and years to come. It is essential that in the process we listen to the ideas and guidance from adults with ASD. Organizations like the Autism Society of America have been doing so for many years and others should follow their lead. Self–advocates must have a platform and voice in the national and statewide agendas that affect their lives. The issues mentioned are ones you will be hearing more about in the future and the more discussion the better as we engage our country in creating the best futures possible for adults with ASD. This is the dream I had for my son Danny and I am confident that we are moving in the right direction towards its realization.
Linda Walder Fiddle, Esq. is the founder and executive director of The Daniel Jordan Fiddle Foundation, a national autism organization with the mission to develop and support through grant-giving, residential, vocational, recreational, educational and family programs that honor the individuality and enhance the lives of adolescents and adults with ASD.