Autism on the Rise
For decades, autism and related disorders were believed to occur in 4 to 5 per 10,000 children. During the past decade, the prevalence of autism has increased to 20 to 70 per 10,000 with the current rate estimated at 1 in every 68 children - 1 in 42 boys and 1 in 189 girls (Centers for Disease Control). Although an exact population count of people with autism currently does not exist, it is estimated that about 1.5 million people in the U.S. have an autism spectrum disorder (ASD). While the reasons behind this increase remain unclear, it is widely accepted that there are greater numbers of individuals being diagnosed with autism today.
The number of adults living with autism today is even less certain. Some sources cite that roughly 80 percent of those individuals with autism are under the age of 22. Given that the prevalence of autism has increased 10-fold during the past decade, the number of children with autism who will become adults over the next few years is huge. Some call it the "autism Tsunami". Consequently, there are vastly larger numbers of older (adolescent/adult) individuals in particular in need of appropriate interventions and services than ever before.
Adult Services in Demand
With this increase in prevalence has come an increased demand for effective services for adolescents and adults with autism and for accurate information on what constitutes appropriate evidence-based intervention and practice. Unfortunately, the need continues to far exceed the available resources leaving a generation of people with autism and their families in a programmatic, financial, and personal limbo and society-at-large economically diminished.
New Plans are Needed
The potential of young adults and adults (14 years of age and older) with autism to become employed and engaged citizens of the U.S. is not so much limited by their disability itself but, rather, by the failures of the system charged with supporting them. According to a state-wide study conducted in Florida in 2008 by The Center for Autism and Related Disabilities (CARD), approximately 67% of the 200 families of 18-22 year olds with autism surveyed did not have knowledge of transition services; 73% indicated they needed help with their job; 63% need help with daily living; 78% do not know of agencies or professionals who can help them find work; and while74% want to work, only 19% were currently working.
The economic cost of this system's failure is far reaching. Research published in March, 2012 found that autism costs society an estimated $126 Billion annually - a number that has tripled since 2006. The report estimated that the costs of providing care for each individual with autism afected by intellectual disability through his or her lifespan are $2.3 Million in the United States. These costs can be expected to grow exponentially without a better and more comprehensive understanding of the needs of adults with autism and plans for productive, effective, efficient and respectful solutions. This point has been stated clearly by the California Legislative Blue Ribbon Commission on Autism; 'Persons with autism spectrum disorders will be served by a public response one way or another - (either by) humane policies and informed programs or by poverty, homelessness and a dehumanizing criminal justice system.'
We need to consolidate and focus our efforts to develop and drive the agenda for life-long living and learning with autism this coming year. We cannot afford 10 to 15 years to get clarity and take meaningful action on this challenge, like it did with advancing the agenda for early intervention and insurance coverage. This agenda needs to be accelerated into a tidal wave that represents real change in the quality of life for adults with autism.
How do we, as a society, help this group of citizen's achieve their rightful place as participating members of society and in so doing transition from an all too common status as 'dependency' to engaged, involved and, ideally, tax paying members of their communities? Among the pressing questions to be answered:
- Where are we? (Current state of the art in residential, vocational, recreational,transitional programming)
- Where do we want to go? (New models that will allow individuals to have full and meaningful lives)
- How will we get there? (Projects/initiatives, strategies, policy changes that will get us there)
Advancing Futures for Adults with Autism is designed to address these questions. We began this challenge through four major initiatives: