Since our son was diagnosed more than 16 years ago, we’ve been part of a powerful learning experience full of some of the highest highs and lowest lows any parent can experience. At every age, our family and millions like us struggle with the answers to basic, immutable parenting questions such as, “what can I do to best support my child?” These questions become even more complex as our children enter adulthood and we wrestle with the looming question of, “who will care for my adult child when I’m no longer able to do so?”
A few years ago, the Southwest Autism Research & Resource Center (SARRC), in collaboration with the Urban Land Institute (ULI) and Arizona State University (ASU), began studying more than 100 residential programs throughout the U.S. and beyond, looking for best practices. We also explored opportunities for scalability and replicability within the fabric of urban and suburban communities, close to where families live. Further, we evaluated the financial catalysts needed to develop true public-private-nonprofit collaborations to create residential options that are part of a healthy community’s housing plan. We’re pleased to share these findings through our new study, Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders.
With more than 500,000 children entering adulthood within the next 15 years, we need to be assured that our adult children are able to live out their lives in comfort and safety, engaged in productive meaningful jobs and experiences that promote independence, and are part of communities that accept, understand and respect their differences.
We recognize that none of us can do this alone. The challenges are too large. The stakes, too high. Waiting is not an option. We must advance plans for the development of long-term residential housing for those individuals living with autism and related disorders, who are unable to live independently and who need support. And we need to advance those plans now.
SARRC is proud to serve as a partnering organization of Advancing Future for Adults with Autism (AFAA), which is bringing our autism community together, promoting a collaborative spirit and developing the public policy needed to create more accepting and inclusive communities.
Our son Matthew, now 18, has four years left in the public school system. That’s four years to achieve our goal of empowering him to become part of the workforce and to someday live on his own. In the early years, we thought we’d have so much time to get him on track. There would be time to provide him with thousands of hours of therapeutic interventions. Time for science to advance and identify the causes and cures. Time for him to outgrow his autism. Time for a miracle.
While we may not have reached all our goals, SARRC, Autism Speaks, AFAA and our partners are continuing to make progress toward building meaningful futures for our children and adults – futures that include friends, jobs, homes and communities that support and value them. Please join us in this journey.
This guest post is by Denise D. Resnik, SARRC Co-Founder and Opening Doors Editor.