Wednesday, June 15, 2011
We read with interest your recent article, "Graduating to an Uncertain Fate" in the Portland Press Herald and applaud you for shedding light on the important topic of adults with autism. They are a clearly underrepresented segment of the autism community with respect to research, service delivery, funding, and even media attention. Sadly, this situation is not unique to Maine. Although we just witnessed a media blitz this past April, Autism Awareness month, with significant attention paid to the "autism epidemic." The reality that the hundreds of thousands of children with autism will soon become hundreds of thousands of young adults with autism is rarely acknowledged. Your informative article clearly helped to address that void.
As you pointed out, we are facing a crisis in our communities with a scarcity of services for adults with autism, and the absence of a clear strategy for closing the gap between the ever increasing need for adult services and an inadequate supply of resources and funding. That must change. We must better support family members, particularly siblings, in their roles as caretakers and advocates throughout the lifespan of the person with autism. We must also look carefully at our education system and ensure that students with autism receive effective education so that they are well prepared for adulthood and that their service needs can be lessened. The fact that resources allocated early and effectively can save a tremendous amount of resources over an individual's lifespan does not always enter the conversation when evaluating costs and benefits. The transition from school to adulthood needs to be more seamless as young adults on long waiting lists for services will likely regress in their skills, further increasing their need for adult services long term. Typical day programs operate for 5 hrs/day, and offer minimal to no community programming. Furthermore, individualized work opportunities (in the community) are rare. So even if an individual graduates with a full resume of skills and work experiences, they may be limited opportunities to utilize these skills.
In addition, we must critically look at the services that currently exist for the adult community. Given the reality of lower staffing ratios and funding levels for adults, it is incredibly important to develop many of the work-related skills that were described in this piece before entering the adult day system. Waiting until adulthood to teach complex work skills within service delivery models that have low staffing ratios will not likely culminate in proficient and marketable skills. This will result in only the most independent individuals accessing vocational opportunities.
Unfortunately, the historical stigma of "autism dampens the perceptions of persons with autism as viable employees. Many earn paychecks, pay taxes, and generally contribute and are active participants in their local communities. We wholeheartedly agree that with the proper supports in place, many young adults with autism could secure paid employment. Many service providers in the field have been very successful in developing working relationships within their communities. Part of this success stems from educating potential employers about the strengths of many potential employees with autism: they are punctual, rarely absent, complete their jobs happily, consistently, and competently, and develop positive relationships with their coworkers.
As a society we have an inherent expectation that neurotypical individuals will access paid employment as adults (or at least attempt to do so). Unfortunately this same expectation does not generally exist for individuals with autism. By setting the bar so low, we not only risk overlooking an untapped and valuable employment resource, we further risk creating a system where important life and community skills (such as vocational training) could become largely ignored in public education simply because these skills remain under-utilized post-graduation.
Thank you for an incredible and well-researched piece of journalism and for raising public awareness about the needs of adults with autism and their families. We hope that journalists of your caliber will continue to write on this important topic!
Ph.D., BCBA-D and Toli Anastassiou, MA., BCBA
Association for Science in Autism Treatment