Our Children with Autism: They Grow Up Fast
This summer, our son Matthew celebrated his 19th birthday and our family heralded the progress he’s worked so hard to achieve as he courageously and tirelessly wrestles with autism. While he has made substantial advancements over the years, he enters adulthood still eating just a handful of different foods, sneaking into his parent’s bed two to three nights a week, and entertaining himself with toddler-level movies and computer programs. In these and many other ways, he remains a very atypical young man. Still, he has great potential and select, highly advanced skills in math, computer science and as my sous chef. He is without a doubt the hardest working young man I know and will make someone a proud and productive employee.
We know that many adults with autism excel in discrete fields and are great assets to their employers. In fact, some have extraordinary and unique talents that enable them to perform better than their “neurotypical” cohorts. Some individuals with autism excel in positions that involve routine: hard to fill non-customer service jobs in industries such as hospitality, restaurant, hospital, maintenance, data input and data management. Others excel in jobs that involve systems, precision work or highly technical support. And many demonstrate lower rates of tardiness, absenteeism and turnover.
But the harsh reality is that even before this current economic predicament, unemployment rates for adults with autism hovered around 90 percent – largely a result of their social challenges and lack of training. By comparison, 67 percent of adults with disabilities are unemployed. The potential of adults with autism to become employed and engaged citizens of the U.S. is not so limited by their disability but, rather, by the failures of the system charged with supporting them. To date, there is an absence of federal entitlement legislation intended to support individuals with autism beyond the end of their 21st year, resulting in a confusing web of state-by-state initiatives that often are under-funded and support outdated or inappropriate models of service delivery to a limited number of individuals.
Our country urgently needs to focus on new models of service and support. We need to design programs that help maximize their independence and engage them in productive daily living. We need accurate information on what constitutes appropriate evidence-based intervention and practice for adults, and standards of professional accreditation for direct service staff. We need to reduce the annual turnover rate of providers, which exceeds 50%, and promote greater professional interest in the provision of quality, effective services and support. We need federal legislation that supports individuals beyond the end of their 21st year and effective strategies for engaging the private sector in solutions. We need to consolidate and focus our efforts to develop and drive the agenda for life-long living and learning with autism now. Hundreds of thousands of parents of children with autism across the country can no longer afford to wait for answers to the pressing question of who will care for our sons and daughters when we are no longer able to do so.
The mission of the Southwest Autism Research & Resource Center (SARRC) (www.autismcenter.org) is to support individuals with autism and their families throughout their lifetimes while advancing research discoveries—and we’re working to fulfill that mission each and every day. In 2009 alone, SARRC provided intervention and training for 2,700 children, adolescents and adults; 4,000 parents, family members and volunteer teens; and 5,000 educational and medical professionals, and service providers.
We’re one of the most robust sites in the U.S. for the recruitment of subjects in pharmaceutical trials and molecular and genetic studies, and one of the largest contributors to the Autism Genetic Resource Exchange, Autism Speaks’ international database of well characterized families living with autism.
We started with early intervention and parent empowerment, which today represent some of our most robust programs, and through the years, we’ve been growing up with our kids. Just two years ago, we formalized our adolescent and young adult program called Autism CommunityWorks®. We have 225 teens with autism spectrum disorders and 75 peer mentors volunteering at 20 local non-profits. In the last two years, they donated more than 18,000 hours of community service. They’re learning new skills, building their resumes, and making friends. As importantly, they’re helping our community value and appreciate the many skills and talents they have to offer.
These teens continue to exceed expectations. At St. Mary’s Food Bank, 20 of them bagged 8,000 pounds of carrots in fewer than four hours. At the City of Phoenix Burton Barr Library, they helped recode every piece of their collection during a 12-week program. As a result, the staff set aside an office for SARRC’s LibraryWorks® volunteers and continues to fill it with tasks each week during the school year.
Through our Employment Services Program, we’re working with adults, evaluating their skills and interests, matching them with appropriate positions and helping them get past the interview. We’ve engaged 15 employers that are giving our clients a chance to succeed. SARRC’s job coaches are helping our clients every step of the way. They assume a position and learn every aspect of that job and all the different social requirements before ever placing a client.
The result: we’re beating the national average! Of the 136 clients enrolled in our program since last February, we’ve already placed 45 and we would love to see every one of them gainfully employed. From our partners at Outback Steakhouse, we know our clients represent some of their most valued bussers and when you say these salads need just one tablespoon of drizzled dressing, it’s one tablespoon of dressing every time!
Our clients are also learning life skills through SARRC’s academy of classes offering topics that range from personal grooming, household budgeting and nutritious cooking to those on relationships, friendships and sexuality.
For nearly a decade, SARRC has been working with the Urban Land Institute in an effort to address the residential concerns for our adults. Just two years ago, we launched a study that evaluated over 100 residential programs in the U.S. and beyond. The name of the study is Opening Doors: A Discussion of Residential Options for Adults with Autism and Related Disorders. We looked for best practices, replicability, scalability and opportunities to develop quality, affordable housing options within the fabric of urban, suburban and rural communities, close to where families live.
The study addresses current and projected demand for life-long living options that support the segment of individuals with autism spectrum and related disorders unable to live on their own, and the services they require. Further, the study explores the financial catalysts needed to spur new investment by the private and public sectors to meet projected demand.
Residential housing for adults with autism and other special populations must be created as an integral part of a healthy community’s housing plan. We must restructure the way existing government funding is allocated to housing resources for the developmentally disabled in order to grow a sustainable real estate supply over time. Although there are a few sources for capital funding, organizations most often use two to three sources to cobble together a workable financial model for the projects. We must engage leaders and institutions that direct capital and influence housing policy by presenting a clear, compelling picture of the substantial demand for housing options.
Opening Doors is intended to highlight existing options and support services, and guide the development of new options so they may serve as organic living and learning laboratories for scholars, social workers and families. The study proposes actionable steps that address the increasing demand for supportive housing and communities, which maximize independent living.
SARRC has also been working with Advancing Futures for Adults with Autism (AFAA), a consortium of 14 regional and national organizations seeking to create meaningful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities. We are addressing the pressing questions facing adults living with autism and their families by bringing together federal legislators, national policymakers and advocates for adults with autism – including individuals who have autism – to discuss priorities for action in both the public and private sectors. Earlier this summer, AFAA unveiled a National Public Policy Agenda with the goal of inspiring legislative action to meet the increasing and unmet demand for effective services for adolescents and adults with the disorder. The National Policy Agenda was announced at a Congressional briefing in Washington, D.C., co-chaired by Senator Robert Menendez-NJ and Congressman Mike Doyle-PA.
The AFAA National Public Policy Agenda focuses on three areas of priority: providing access to services and supports to develop important life skills; providing access to skilled direct care personnel; and providing access to – and choice within – the funding of services. Among other actions, AFAA is calling for the expansion of appropriate housing opportunities, greater vocational supports, more training for service providers and portable and individualized funding streams for services. During the Advancing Futures for Adults with Autism Congressional Briefing, AFAA also addressed the unique needs of adolescents and adults living with autism in the areas of residential, employment and community life, as well as many cross-cutting themes.
Matt’s birthday celebrations are powerful reminders of the stark contrasts between his development and that of his typical peers. Matt has three years left in the school system to achieve our goal of making him an independent young man. In the early years, we thought we’d have so much time to get him on this track. Time to provide him with thousands of hours of therapy. Time for new scientific discoveries. Time for a miracle… And now, time is running out, not just for Matt, but for an entire generation of kids who fueled the statistics that made autism spectrum disorders (ASDs) a national public health crisis. While the economic cost of our country’s system failure is far reaching, the human cost is immeasurable. The time to act is now. We can ill afford to wait to achieve consequential action on the challenges before us.
Denise D. Resnik
Co-founder, Southwest Autism Research & Resource Center (SARRC)
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.