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Finding Snowbells in the Desert

The post below is written by Valerie Paradiz, PhD, Director, Autistic Global Initiative; Curriculum Specialist, First Place Leadership Institute; and Elijah's mom. Val is also a member of the Autism Speaks Family Services Committee.

April is a month of promise. In the Catskill Mountains of Upstate New York, where I raised my son Elijah, we had long, cold winters. As March and April would arrive, I’d wait patiently for the ground to thaw, keeping watch for the very first blossoms of the season: tiny white snowbells poking up through the old crust of snow and ice. That’s when the air would begin to grow softer and warmer. Then, as more days passed, we’d realize, all of a sudden, that our lives had momentum again, that we were being swept forward by an irrepressible feeling of promise. Spring, at last!

As a person on the spectrum and as a parent of a 24-year old with autism, I like to take time during Autism Awareness Month to reflect on the amazing accomplishments our community has achieved. Like the inevitability of spring, I have grown to trust our resilience in seeking and finding answers to the challenges that we face together. For example, when it comes to young adults like Elijah, I have discovered that promising solutions are well underway at a new, mixed-use residential community in the heart of Phoenix, Arizona called First Place. If it’s possible to find a snowbell in the desert, then First Place is it.

Allow me to set the context.

My son’s generation marks a significant increase in the number of individuals who are identified as autistic in the population. We have seen staggering projections of a half million children with autism aging out of school and into adult life in the next decade. Our numbers alone make it very clear that the autism community is embarked on an irrepressible journey toward solutions in the adult services and housing sectors. The answers that come must be fresh and new. They must depart from obsolete, and in some instances deeply entrenched, methods of supporting adults with disabilities in order to meet the demand.

How will we establish enough places for adults with autism to live? How will we create jobs? How will we develop supports that allow the remarkable diversity of spectrum adults to thrive across the life span?

More than ever before, I keep an eye out for solutions. I look for them just as earnestly as when I searched for the first snowbells in spring. Elijah lives in his own apartment now in Woodstock, New York, and he has a part-time job at a restaurant just a few blocks away from his home. It wasn’t easy for him to achieve these things. Recent research on young adults in transition has shown dramatic disengagement from both employment and post-secondary education after high school, sometimes lasting for up to six years.

Adults with autism are now here in numbers. We have reached critical mass, and there are new models emerging that aim to push the envelope in every aspect of adult life: housing, employment, community networks, transportation, medical care and wellness. First Place is doing this in all directions, and all at the same time, with its new beta-site at 29 Palms apartments. I am honored to join the First Place team to co-develop a two-year curriculum with for young adults on the spectrum and recently had the opportunity to spend the month of March at 29 Palms, where young adults with autism are living and learning together in a multi-generational apartment community that includes seniors as their neighbors.

Next steps include construction of the new First Place Apartments, Transition Academy and a National Leadership Institute expected to break ground next year.

The First Place curriculum is the backbone of the Transition Academy, being advanced in collaboration with SARRC, and as you’ll see in the video below, the guys living at the beta site are thrilled to be in their first place while learning all the skills they need to do so. Just like Elijah, their energy and commitment inspire me! Although some people describe this young generation of autistics as a tsunami of needs, I call them uplifting, powerful and irrepressible, just like spring!

Autism Speaks has a multitude of resources to help individuals with autism and their families in the area of housing and residential supports. Resource include:

  • The Housing and Residential Supports Tool Kit was developed to assist individuals and families as they identify and secure appropriate residential supports and services by providing an overview of housing options and tools to help access these services.
  • Housing and Residential Supports catalog to search for local housing services in your area.
  • Autism Speaks is committed to increasing services and expanding opportunities for the rapidly growing population of young adults and adults with autism. To that end, we have launched a Housing and Community Living initiative to increase access to housing and residential services of adults with autism by reducing HCBS waiver wait lists and improving housing vouchers, and to expand the capacity of service providers who care for them. Sign up to join this initiative HERE.
  • The AGI Daily Living/Residential Curriculum for Direct Support Providers. funded by Autism Speaks, is the first-of-its-kind training designed to build capacity in residential adult services wherever adults with autism live, including in private homes with their families, group residential settings, assisted living, agricultural, and intentional communities.

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.