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Congressional Hearing- The Lack of Available Services for Adults with Autism Spectrum Disorders
An area of much focus for members of Congress and members of the panel was the importance of, and the lack of, services for adults on the autism spectrum. The second panel that sat before this congressional hearing was composed entirely of members of various autism advocacy organizations. Each member of this panel expressed concern about the dismal state of services, research, and funds associated with “aging out” on the autism spectrum. The second panel of witnesses seemed to address the issues surrounding adults on the autism spectrum in a precise manner and with more frequency than the first panel. Specifically, the topics discussed related to this issue included the lack of availability of services that help adults on the autism spectrum to maximize their independence to become more productive members of society and the need for more educational and vocational programs aimed at adults with autism to combat the high dropout and unemployment rate observed in adults with autism.
Del. Eleanor Holmes Norton was the first member of the hearing to emphasize that when young adults on the autism spectrum are no longer protected by IDEA there are no other government mandated services to help them to become productive members of society. (1:01) She described the situation as “tragic.”1 Scott Badesch made the topical comparison of the upcoming “fiscal cliff”, which is the term used to describe the potential tax crisis facing our nation, and turning 21 as an individual on the autism spectrum “as the greatest cliff that occurs in [the autism] community.”1 (2:36). John Michael Carley described the current state of services as “paltry in comparison with the true need out there right now.”1 (2:48) The lack of government response to this issue is highlighted in Ari Ne’eman’s statement as he recites compelling data that shows “in 2010 [National Institutes of Health] spent $217 million on autism research, of that only 2.5% went to research on improving the quality of services. Only 1.5% went towards research on autistic adults and our needs.”1 (2:55) Clearly, there must be more research and funding focused not only on exploring treatments and diagnostic tests for the future, but also on the types of supports adults presently need. These types of services for adults with autism include appropriate housing, therapeutic options, and employment and secondary-education programs.
Education and work training programs were the topics of the most debate regarding the services for adults on the autism spectrum. The belief of the second panel of experts was that there is an entire population of adults on the autism spectrum that when given the right tools and training are able to become employed, independent, and more productive members of society. According to Mr. Carley, employment programs can help adult individuals with autism with the behavioral challenges they may face, which include social deficits, executive functioning issues, and hidden curriculum issues. (3:09) Bradley McGarry built on Mr. Carley’s beliefs as he described the Asperger Initiative at Mercyhurst (AIM) program, which is a program made possible through a $100,000 grant from the U.S. Department of Education that “focuses on building a foundation of self-advocacy, social skills, and sound academic progress.”1 The program has identified academic/social progress, independence, social, and emotional as the main domains of focus to help adult individuals with autism succeed in an educational and vocational setting. (2:43) Additionally, Mercyhurst University has implemented a program that allows adult individuals on the autism spectrum to mentor other individuals with severe disabilities who participate in social service programs. The mentorship program helps give hope to individuals with severe disabilities as they are provided the opportunity to engage face-to-face with another individual who had to overcome similar obstacles that confront them. Mr. McGarry also expressed his belief that the stigma associated with members of the autism spectrum creates a misrepresentation of what this population can really achieve. He illustrated this point through a story of a young man who was involved in the AIM program and given an assignment that encompassed 60% of the student’s grade. His teacher had expressed concern that the student did not grasp a word of what he was saying when explaining the outline of the project. This ten-week assignment was turned in to the teacher the following Tuesday and, according to Mr. McGarry, “that professor said it was the most incredible piece of student graphic art that he had seen in 25 years. So, we know that there is a misrepresentation from what we think is being heard and what is being processed and the caliber of students that we’re working with.”1 (3:41). More initiatives like the AIM program and similar vocational programs must be implemented if researchers and advocates are going to reach this often ignored population and help neurotypical individuals to better understand ASD in adulthood.