The Autism Society Event and Education Recordings Archive

This presentation examines the current research findings on adult outcomes of individuals diagnosed with Asperger syndrome (AS) and offers suggestions for future research endeavors in this critical area. Specific areas discussed include employment issues, comorbid mental and physical health issues, neurological issues, possible problems with the legal system, and research on mortality rates. The research data is interwoven with the presenter’s experience as a professional in the field of autism and as the parent of an adult son with AS. Asperger syndrome (AS) is a life-long developmental disability that is currently considered to fall on the higher functioning end of the autism spectrum (ASD) continuum according to Frith (2004) and Wing (2000). However, the social skills deficits associated with AS have a tremendous impact on the individual’s ability to navigate relationships and to find and maintain employment. In fact, Howlin (2000) reviewed the research on long-term outcomes in adult life of more able individuals with high functioning autism (HFA) or AS and concluded that “although high-functioning people with autism or Asperger syndrome may succeed well as adults, such achievements rarely come easily” (p. 79).
Most of the current research is focused on children and adolescents with AS. There is a dearth of longitudinal research on adult outcomes for those with AS for several reasons. First, the diagnosis of AS was not available in the United States until 1994 when it first appeared in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorder ( 4^th Ed.). Therefore, many people did not get the diagnosis earlier and did not receive interventions. Second, some follow-up studies were conducted from childhood to adulthood; however, high functioning autism was combined with AS in some studies (e.g., Howlin, 2000) and in other studies the individuals were hospitalized in psychiatric institutions as children with diagnoses such as schizophrenia and the researchers determined through studying their records that they today would be diagnosed with AS (e.g., Larsen & Mouridsen, 1997). The research literature does contain some anecdotal reports, case studies and group studies of individuals with AS. Anecdotal reports of individuals such as Willey (1999) Shore (2003), and Newport (2001) are encouraging because these individuals have used their strengths to become successful in their chosen fields. However, other research studies reveal a poorer prognosis in adulthood for people with AS. Romoser (2000) coined the phrase “malemployment” because individuals on the high end of the autism spectrum are frequently working at a job far below their skill level and at a task for which they are totally unsuited.
Professionally, this writer has worked with individuals with AS and their families for the past 10 years and also has assisted her adult son in the transition process to adulthood. Securing employment and maintaining employment have been the biggest issues to deal with during this transition time. Navigating social relationships in and out of the workplace also have been extremely challenging for young adults with AS. This writer was requested to write an article by Dr. Brenda Myles for a special issue on AS in Focus on Autism and Other Developmental Disabilities. This led her to conduct research on the following issues that frequently complicate employment for these individuals: comorbid mental health conditions, physical conditions, neurological and sensory issues including sleeping difficulties, and social cognition. Much of the research that will be discussed in this presentation was reviewed in this recent article that also contained personal experiences her adult son faced in trying to navigate the arduous road of adulthood (Barnhill, 2007). He frequently worked at jobs that were below his skill level and also frequently lost these jobs due to social skill errors made at the work place. In addition, a review of the research on legal issues, mortality rates, and treatments will be briefly reviewed. Furthermore, recommendations such as the increased need of public awareness, education, and recognition of AS will be addressed. Successful employment models such as England’s Prospectus program and Denmark’s Specialisterne will be examined. More employment models like these need to be implemented in the United States to assist these individuals in finding their niche and attaining success in the work world.
This workshop would benefit professionals who work with individuals with AS, family members of individuals with AS, and individuals with AS. Professionals who work with adolescents with AS would benefit by learning about the challenges adults face so that they can better prepare their students and clients for the transition to adulthood. Professionals working with adults would benefit by learning about the current research and how this information can be used to design effective interventions. Family members and individuals with AS may gain some new perspectives and insights, as well as research knowledge, on the outcomes of adults with AS and recommendations to improve these outcomes.
Learning Objectives:

1. Participants will be able to describe the unique employment situations faced by individuals with AS.
   
2. Participants will be able to describe several comorbid medical and physical health conditions that impact the adult with AS.
   
3. Participants will be able to articulate the need for more research in the area of job development and employment supports for individuals with AS.
   
4. Participants will be able to explain the impact of AS on the family system.
   

Learning Objectives: