During the past several years you have undoubtedly read about what some have called an “autism crisis” or “autism Tsunami” referring to the increasingly large population of children who are diagnosed with autism that are aging to adulthood. Is this the actual “crisis” we should be focusing on or a marketing strategy to create more awareness about adult autism? Much has been achieved in recent years, as more organizations begin to focus on adult life, and new programs relating to residential and employment options are emerging. Whether there are more adults today as in years passed facing the challenges associated with adult autism has not been definitively established, but what is clear is that the general population is more aware that adult individuals require differing and appropriate opportunities to live fulfilling and productive lives.
As an autism community, and as a nation, we must continue to do more to assist individuals diagnosed with autism achieve their potential, not only in childhood, but throughout their lives. The Daniel Jordan Fiddle Foundation, a pioneer in the creation of programs, public policy, resources and endowed programs benefiting the diverse population of adults, has led the charge in these areas since our inception in 2002. In 2016, we who focus on adult autism should be asking how we can affect enduring change that enables all individuals to fulfill their potential.
Ask any adult diagnosed with autism, or in many cases his or her parent, since many cannot advocate for themselves, what their biggest challenge is and they will tell you it is the broken system. When a person transitions from school age entitlements to adult life the system of supports, the stream of information, and the selection of services are incompetently managed through a bureaucratic system that is mind-boggling. Access to information and programs, medical and insurance needs, and the ability to earn income without losing benefits are only a few examples of the areas where change is needed. The broken system is the “crisis” that needs addressing, and this not only affects adults diagnosed with autism, but others diagnosed with a disability. The call to action that needs to be heard is a call to fix the broken system of incompetency.
Please let’s not accept that the “crisis” is merely in the numbers of children aging to adulthood. Yes, more programs and community life options are needed to serve adults but the statement that this is the “crisis” we should be focusing on is a shallow statement. The crisis that must be addressed is one of an incompetent system that has been around for decades. The time is now to take action in Washington, D.C. and on the statewide level that will change the systems on which adults diagnosed with autism rely. It is time to address what I call “the crisis of incompetency.” If we do not, only a small, elite group of individuals will have the means to benefit from the newly created residential and employment programs organizations are developing while the majority of adults will continue to remain on waitlists and underserved.
Linda Walder is the Founder and Executive Director of The Daniel Jordan Fiddle Foundation for Adult Autism whose mission is to develop, advocate for and fund programs, resources and support systems that benefit the diverse population of adults diagnosed with autism. For more information, please visit www.djfiddlefoundation.org.