MAKING THE CASE
The evolving portrait of “Autism”: 2016
In 2013 the scientific definition of autism was broadened to include all levels of functional severity under the broad designation of Autistic Spectrum Disorder or “ASD”.
29 Acres is being created to serve the entire group of people with ASD, thus the tag line “ At Home Across the Spectrum”
Recently, the US Government published an updated estimate of the number of children who have ASD – 1 in 45 persons. The number of people diagnosed with Autism in 2016 is over ten times the number diagnosed 40 years ago.
Prior to the 1970’s, the estimated 50% of adults with severe ASD were hidden away in institutions where they lived out their lives shunned from society and forgotten. Others who were less severely impacted were mislabeled as “strange” and either supported by family or lost in the world of the homeless.
Over the past 30 years, advocates and professionals have worked hard to create a more neuro-diverse culture that welcomes persons with disabilities, especially in our educational system, where the practice of less-restricted environments is heavily emphasized. Extraordinary gains have been made in the areas of early diagnosis and enhanced social and educational instruction. This cultural evolution has moved many folks with ASD into the mainstream of society.
However, as adults with autism “age out” of school, it has become painfully evident that their world shrinks dramatically. Faced with a disjointed service provider network, there are few options for ongoing support of independent living skills, connections to meaningful employment and opportunities to socialize and be with peers. Without ongoing support, adults with autism have been shown to lose skills.
The shortage of safe housing is even more evident.
ASD IS A LIFELONG DISABILITY THAT IS NETHER DEGENERATIVE NOR TERMINAL AND LIFE SPANS ARE IDENTICAL TO THOSE OF ADULTS WITHOUT AUTISM.
ADULTS WITH ASD, HOWEVER, ALMOST ALWAYS REQUIRE SOME DEGREE OF LIFELONG SUPPORT TO MAXIMIZE INDEPENDENCE AND SUCCESS, EVEN FOR THOSE WHO ARE LESS IMPACTED.
CONSIDER THESE DISTURBING FACTS:
An estimated 500,000 young adults with autism are expected to “age out” of school over the next 10 years.
In Texas, there are only a handful of programs that are designed to meet the ongoing needs of these individuals and an even smaller number of housing options. As a result:
- 90% of adults with ASD are unemployed or under-employed
- 87% of adults live with their parents, but only 22% want to live there. They most often live with parents who are ill-equipped to meet their ongoing needs as the parents advance in age.
Many of these adults endure a life of loneliness and boredom that deteriorates further as their parent’s ability to provide support dwindles with aging. It is reported that 57% of adults with ASD are depressed and the majority of these individuals lose contact with their peers/friends soon after graduation from high school.
The financial implications of a lifetime of autism are staggering.
The annual cost to support an adult with moderate to severe autism is roughly $100,000. This is similar to the annual cost to care for someone with Alzhiemer’s disease, however, unlike Alzhiemer’s disease, adults with autism have normal life spans, so they are looking at $100,000 for 50-60 years, not 10 years.
Government funding available to Texans with moderate to severe autism is extremely limited and is associated with 10+ year wait lists. For the few that do receive funding, these funds cover roughly 60% of the actual cost.
It can be difficult to paint the picture of the challenges adults with ASD face. Below we try to describe some of the challenges with which individuals with ASD live, and parents and professionals working with ASD encounter.
IMAGINE the horror when a momentary lapse in caregiver oversight occurs and your loved one walks into traffic because they don’t understand the danger of a busy street. Or maybe they walk out the door and you can’t find them. You have no idea which way they went and you know that they have no concept of danger. Adults with ASD have ended up miles from home or a public outing. Fear of elopement leads to restricted and isolated lives.
If resources are not in place to manage safely venturing past a front door, then the cycle of isolation and loss of shared community experiences continues to occur.
IMAGINE your loved one alone, spending most of every day engaged in almost nothing purposeful because they don’t know what else to do with themselves. Imagine the sadness and guilt family members feel because they are unable to provide for their loved ones needs.
IMAGINE your loved one eating everything in sight, any time of the day, simply because they can. Imagine the healthcare issues, most of which are preventable, that poor eating habits and poor overall health predispose them to and all the medications that will be prescribed as a result.
IMAGINE your loved one having no friends calling or texting or dropping by for a visit. Imagine not being invited to birthday celebrations – ever.
IMAGINE your loved one losing their job because he/she doesn’t understand how to get along with co-workers or doesn’t understand the importance of being punctual to work. Or maybe they haven’t showered for the past week and they don’t understand how that relates to keeping a job.
IMAGINE your loved one not being able to find a job because they have no means of getting there everyday.
- A COMMUNITY WHERE an adult with ASD is supported to freely move around and not be in danger.
- A COMMUNITY WHERE purposeful programming and the goal of greater independence is the standard.
- A COMMUNITY WHERE exercise and choosing healthier food options can be a part of every day and accessing quality medical care is the norm.
- A COMMUNITY WHERE adults with ASD can have friends and feel a sense of wellbeing and belonging.
- A COMMUNITY WHERE persons with ASD have a clear path to their local communities so they can be around the people, places and activities they choose and that make them happy.
- A COMMUNITY WHERE adults are encouraged to look for employment (or a volunteer opportunity) that matches their strengths and interests and are fully supported to be successful so they may feel productive and self-fulfilled.
CAN THE VISION AND MISSION OF 29 ACRES BE REALIZED AND CHANGE THE LIFE OF AN ADULT WITH ASD? YES!
WE CAN engage adults in ongoing learning, meaningful employment and robust social interactions that provide continuous growth in a safe environment.
WE CAN demonstrate improvement in Quality of Life (QOL) as measured by joy and self-fulfillment and other QOL indicators.
WE CAN connect adults with ASD to their local communities and help them foster true friendships among peers, staff and neighbors.
WE CAN reduce the incidence of depression and feelings of loneliness and not belonging. The amount of medications adults with ASD are prescribed for depression and disruptive behavior can be mitigated.
WE CAN emphasize the importance of health and fitness and encourage participation in recreational activities, aerobic sports and exercises. We can introduce healthy food options as a replacement for foods with less nutritional value. Healthier lifestyles can become a way of life in our community.
WE CAN further improve healthcare for adults with ASD by partnering with local medical professionals and tertiary medical centers so ongoing medical care is more easily accessible.
WE CAN create a culture of empowerment for employed and volunteer staff by improving education and training opportunities coupled with better compensation and work conditions.
WE CAN work with educational and training programs in the community and specifically at the University of North Texas to bring the most current best practices to the program and an ever replenished group of eager, energized and compassionate paid and volunteer workers.
WE CAN further research in adults with ASD by actively pursuing opportunities to collaborate with our local universities and other organizations.
FINALLY, we believe the programs and environment at 29 Acres will result in less attendant care over a lifetime and a greater probability of productive work, resulting in net positive earned income.
We assert that the societal cost in expended dollars alone can be reduced in the context of a more full and rich daily life for an adult with ASD.
“IN NORTH TEXAS, AND THROUGHOUT THE UNITED STATES, IT IS CRUCIAL THAT COMPETENT, CARING, AND COMMITTED INDIVIDUALS BEGIN TO ADDRESS THE UNIQUE, SIGNIFICANT LEARNING, EMPLOYMENT, AND HOUSING NEEDS OF ADULTS WITH AUTISM. WITH THE STEADY INCREASE IN THE NUMBER OF PERSONS BEING DIAGNOSED WITH ASD, THE DEMAND FOR THESE QUALITY SERVICES WILL ONLY CONTINUE TO GROW IN THE YEARS AHEAD. THE TIME TO ACT IS NOW.”
Kevin Callahan, PhD. Executive Director UNT Kristin Farmer Center for Autism