The Autism Society Event and Education Recordings Archive

Much has been written recently by parents of children with autism spectrum disorders, but little has been written that directly focuses on the important issues that an adult and his or her family are facing when dealing with Asperger Syndrome (AS). This presentation will provide parenting perspectives from a father and a mother, who is also a professional in the field of autism. AS brings unique challenges to families, especially during the transition to adulthood and the adult years. Much has been written recently by parents of children with autism spectrum disorders, but little has been written that directly focuses on the important issues that an adult and his or her family are facing when dealing with Asperger Syndrome (AS). Given that the diagnosis of AS was not available in the United States until 1994 when it first appeared in the Diagnostic and Statistical Manual of Mental Disorders, there is a dearth of information and research on adult outcomes of individuals with this condition. We are fortunate to have books written by adults on the autism spectrum such as Temple Grandin, Lianne Holliday Willey, Donna Williams, Stephen Shore, and Jerry Newport, just to name a few. These books have been invaluable in providing insight on what it is like to live with an autism spectrum condition. However, there still is not much information on the impact of ASD, including AS, on the families living with adults with this condition. This presentation will provide this unique focus. The presenters, Gena and Press Barnhill are parents of a 33-year-old son who has AS. Gena also has a Ph.D. from the University of Kansas  in special education that focused on Asperger Syndrome and Autism and she coordinates the Autism Certificate Program for graduate students at Lynchburg College in Virginia. 

The presentation will provide parenting perspectives from a father and a mother, who is also a professional in the field of autism. Asperger Syndrome brings unique challenges to families, especially during the transition to adulthood and during the adult years. The issues of co-dependency versus  necessary support, navigating relationships, living arrangements, medication management, health care and diet issues, perseverative interests, and dealing with “black and white thinking” will be presented from the parents’ perspectives. These parents will also candidly share the impact of navigating the uncharted waters of parenting an adult with AS on their relationship with each other and their relationships with other family members and friends.  Press and Gena facilitated a support group for 350 parents who had family members with an autism spectrum disorder for 5 ½ years and gained tremendous insight into the issues that other families face. 

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). A brief description of the current research on adult outcomes for individuals with AS in the areas of employment, comorbid mental and physical health issues, and neurological issues will be discussed. Professionally, Gena has worked with individuals with AS and their families for the past 12 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. Gena researched issues that frequently complicate employment for individuals with AS including comorbid mental health conditions, physical conditions, neurological and sensory issues including sleeping difficulties, and social cognition after experiencing the roller coaster ride 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. Press and Gena have written a book, Uniquely Yours: Encouragement for Parents of Children With Special Needs, scheduled to be published in the fall of 2009 and Gena currently has a contract with the Autism Asperger Publishing Company to write a book on the parent’s  perspective of raising an adult with AS. In 2002, Gena described their family’s arduous journey in getting the diagnosis of AS for their son when he was 21 years of age in Right Address…Wrong Planet: Children With Asperger Syndrome Becoming Adults.
This workshop would benefit family members of individuals with AS, professionals who work with individuals with AS, and individuals with AS. Family members will gain an awareness that they do not have travel the journey of AS alone in uncharted waters because there are others who are experiencing similar issues. In addition, 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. 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.
Learning Objectives:

1. Participants will gain insight into the perspective of a mother and a father parenting an adult with AS.
   

2. Participants will be able to explain the impact of AS on the family system and describe several key issues facing families such as marital issues, financial strain, relationship challenges, and planning for the future when the parents are no longer alive.
   

3. Participants will be able to describe the unique employment situations faced by individuals with AS.
   

References
American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4^th ed.). Washington DC: Author.
Barnhill, G. P. (2007). Outcomes in adults with Asperger syndrome. Focus on Autism and Other
Developmental Disabilities, 22, 116-126.
Barnhill, G. P. (2002). Right address… wrong planet: Children with Asperger Syndrome
becoming adults. Shawnee Mission, KS: Autism Asperger Publishing.
Barnhill, P., & Barnhill, G. P. (in press). Uniquely yours: Encouragement for parents of children
with special needs. Birmingham, AL: New Hope Publishing.
Frith, U. (2004). Emmanuel Miller lecture: Confusions and controversies about Asperger syndrome. Journal of Child Psychology and Psychiatry, 45, 672-686.
Howlin, P. (2000). Outcome in adult life for more able individuals with Asperger syndrome.
Wing, L. (2000). Past and future research on Asperger syndrome. In A. Klin, F. R. Volkmar, &
S. Sparrow (Eds.), Asperger Syndrome (pp. 418-432). New York: Guilford Press.

Learning Objectives: