The Autism Generation Grows Up: Now What?

  • Autism Society San Francisco Bay Area

    About 30 years ago, something unexpected and inexplicable started happening in California. Data from our Department of Developmental Services (DDS), which has long maintained meticulous records of the developmentally disabled, shows that in about 1980, children began to be born with higher rates of the mysterious, and at that time, rare, neurodevelopmental disorder of autism.

    From fewer than 2,000 cases statewide, the number grew to 2,701 by 1987, to 14,461 by 2000, to 49,889 by 2010, and today, exploding to a staggering 70,268 cases.

    In other words, for every one Californian rendered substantially disabled by autism in the mid-1980s, there are more than 20 today. Here’s another shocker: the nine Bay Area counties now count 11,318 people with substantial autism, with only about 500 of them over the age of 31. Santa Clara County’s autism population, to cite one example, soared from 147 RC-eligible cases in 1990 to more than 3,000 today.

    Which means we have an unprecedented adult autism crisis on the horizon, with a huge demographic bubble about to swamp our already at-capacity adult housing and services programs.

    Did better awareness of autism drive California’s autism explosion? Not a chance: the 70,268 cases count only the “substantially disabled” served by DDS and not the tens of thousands more moderately affected spectrum kids whose disability labels are somewhat more susceptible to vagaries of diagnostics. In fact, UC Davis studies have confirmed that the observed increase in autism cases cannot be explained by a loosening in medical criteria used to make the diagnosis. Moreover, DDS autism cases have continued to climb in spite of increasingly restrictive eligibility criteria in the overburdened Regional Centers.

    As ever-growing numbers of dependent adults challenge the existing care system, we have no choice but to think creatively about how to expand capacity for day programs, service options, housing, and, our biggest fear, the care and supervision of our children after we’re gone. For the past year, Autism Society San Francisco Bay Area has hosted our Adult Housing and Lifespan Care Solutions Initiative, shining a bright light on these questions. We have archived the bulk of our materials and videos on our website, sfautismsociety.org, including notes, slides and videos from the following:

     

    • Introductory Panel: Adult Autism Housing and Lifespan Care Solutions Summit, May 2013

    • Private Investment Model of Autism Housing Roundtable, Sept 2013

    • Small-Scale Housing Solutions Workshop, Oct 2013

    • Estate Planning Workshop, Oct 2013

    • Future of Adult Day Programs: Center-Based and Customized Solutions, Nov 2013

    • Out of the Nest: Panel on Parent-Directed Services, November 2013

    • East Bay Housing Panel, Dec 2013

    • Coffee Klatch with Autism Society President Scott Badesch, Jan 2014

    • East Bay Housing Networking Group notes, Jan-Jun 2014

    • Policy Panel: Moving Toward Solutions for Lifespan Housing and Care, featuring Santi Rogers, new director of DDS, Jan 2014

    • Building Dream Communities for Adults with Autism, Feb 2014

    • Protecting our Adult Children from Physical, Sexual, Financial and Emotional Abuse, Mar 2014

    • Nonprofit Housing Developers and Autism Housing, Mar 2014

    • Support Services for Teens and Adults with High-Functioning Autism/Aspergers, Apr 2014

    • Affordable Housing for Adults with Developmental Disabilities, May 2014

    • Advocating for Your Adult Child’s IPP, May 2014

    • Housing Options: What We’ve Learned, May 2014

    • Who Cares for Our ASD Adult Children After We’re Gone?, May 2014

    • Parents Share Stories of Transitioning their Developmentally Disabled Children Out of the House and into Supported Housing, Jun 2014

     

    This fall we are hosting a one-day conference focused on the practical aspects of starting new autism and developmental disability housing projects: “A Place for Us: Supported Housing Solutions for Adults with Developmental Disabilities” The event features nationally recognized speakers and will take place October 24 in Redwood City. Registration is available on the sfautismsociety.org website. We are also facilitating the creation of more regional autism/developmental disability housing networking groups throughout the Bay Area. Already three are up and running, in San Francisco, in San Mateo County, and in Alameda County. For more information on local groups, please visit our website.

    But beyond educating ourselves, we must start advocating for change. It should be clear that time has come to reform our adult developmental disability system that was not designed to handle so many and with such intensive needs.

    Fortunately, there are some common sense reforms available to help address our changing conditions quickly and efficiently. These reforms include: (1) allow for expansion of adult day programming options through strategic subsidies, (2) allow for options for community-based housing emphasizing public-private partnership and rental vouchers, and (3) reform of antiquated community care regulations to explicitly address the complex programmatic needs of the growing adult autism population.

    Autistic children grow up to become autistic adults. One day, the yellow school bus will stop coming, and we need to lay the groundwork for our children’s futures, starting now. We encourage all Bay Area autism families to get involved in our Initiative by visiting our website, attending our events, joining or starting a regional housing group, or volunteering. Working together we can create a brighter future for our grown children.

     

     

    Autism Society San Francisco Bay Area is a grass-roots organization dedicated to improving the well-being of local autism families, with an emphasis on expanding the limited lifespan care options for the dramatically increasing numbers of adults with autism. For more information, please visit www.sfautismsociety.org

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