The Autism Society Event and Education Recordings Archive

This session presents the results of a study that examined the opportunities for adults with ASD. Participants, 143 caregivers supporting an adult with ASD, were asked to assess their family member’s opportunities in three areas: socialization, employment, and residential living and provide information regarding their needs as caregivers. Results indicate that the quality of life for adults with ASD remains very limited. Presenters will discuss implications for needed change within our communities, schools, and the political arena. Details of Content:

It is important   to understand how parents and caregivers perceive opportunities for their family member with ASD. More specifically, it is important to understand the opportunities that exist in residential living, employment, and socialization, three indicators of a Quality of Life (QOL).  During the past twenty years we have increased our efforts in both research and education in the area of autism spectrum disorders; yet, a question remains:  Have our efforts resulted in an improved quality of life for adults with autism spectrum disorders?

This session presents the historical findings of studies that have examined outcomes for adults with autism spectrum disorders and will outline eight quality of life (QoL) indicators that determine outcomes. Following the historical findings and overview of quality of life, this session presents the results of a recent study that surveyed 143 caregivers supporting an adult with ASD. The survey examined the needs of caregivers and the opportunities for adults with autism spectrum disorders in three areas: (a) employment, (b) socialization, and (c) residential living. Both quantitative findings (results of Likert Scale questions) and qualitative findings (open-ended responses by caregivers) will be presented. A sample of the findings includes the following:

·        Caregivers prefer the support of friends/ close family members as opposed to that of professionals

·        75% of caregivers feel that financial planning if of greatest importance

·        72% felt that their state did not provide ample services to families or their family member

·        Only 24% had a respite provider for their adult family member

·        58% stated that the family member’s behavior was so problematic that it interfered with their family functioning

·        63 %  of adults with ASD were unemployed

·        While 81% of family members were living at home, only 15% of caregivers ever felt that their family member would have the opportunity to live away from home. Caregivers supporting an individual with significant communication difficulties were reluctant to seek outside residential living arrangements.

Presenters will also share the open-ended comments from caregivers. Many comments, for example, stated that the behavior of the individual, lack of transportation (49% never have access to public transportation), and lack of social skills frequently prohibited community outings. Comments highlighted caregiver frustrations: “I’m tired of being stared at when we got out ….because of his behavior”…“he tries to talk with ‘normal’ people but does not know what to say”…“he does not do well in social settings…becomes agitated and uncooperative… he does not go out except to school or to family.”  

Comments regarding respite care highlighted other difficulties: “I have no idea where to begin…we want to take a short vacation but there is no one to watch her…she functions at a 36 month level…who will watch her?”  “…there are no service providers around here and if there were, I am too exhausted physically, mentally, emotionally, and spiritually to even call”…“Our son is very low functioning...it is difficult to find responsible, trustworthy respite providers—especially those who can spend the night….$32 a day is not enough…” “They [respite providers] only want to watch the less active”…“everyone wants to watch someone small and quiet…that is not my son.”… “There are no male respite providers….that is what our son needs.”

Other caregivers noted that their family member was very social but was not accepted in the community: “Our son is social…but there is a lack of understanding and compassion from the non-disabled…for that reason we do not push socialization”…“We attend church and try to share experiences…but they are few”…“when people hear the word ‘autism’ they think of Rainman…people need more information.” Additional comments will be presented that highlight how caregivers rate the public schools in regards to preparing students for life after school.

Following the presentation of survey results, the presenters will identify strategies that can be implemented by schools, families, and organizations working with students with ASD that will improve their quality of life.  An example of strategies that will be presented includes the following:

• Train community individuals who may become possible respite providers. The researcher of this study will present a plan to train retiree “tandem” couples about ASD and to have them provide needed support to families supporting a child with ASD.
  
• Universities should link with communities and provide free counseling services to families supporting a child with ASD.
  
• University campuses can be age-appropriate environment for adults with ASD. Many universities now offer non-degreed programs for individuals with developmental disabilities.
  

Contributions to Best Practice:

Despite the growing societal focus on autism, research regarding adults with this disability is lacking. This study documents the feelings of some caregivers of adults with ASD and contributes information regarding the needs of these adults. This information can assist professionals in schools as they assess whether their practices are actually resulting in an improved quality of life for students with ASD. Survey instruments, such as the one used in this study, represent one component of a comprehensive program evaluation that may be used to examine outcome measures for adults with ASD and may become part of Best Practice.

Most recent funding and research involves the lives of very young children with ASD. While this area of research is crucial, little is known about the lives of adults with ASD or the needs of their caregivers. This study of 143 families supporting an adult with ASD will shed new information regarding the needs of families and the opportunities for adults with ASD after they leave our public schools. These preliminary findings can provide discussion for the topic of quality of life for adults with ASD and their caregivers. This dialogue should involve professionals, parents, and policy makers regarding present and future services.             

Learning Objectives:

Presenters:

Janet E. Graetz, Ph.D.
Assistant Professor of Special Education
Oakland University

Dr. Janet E. Graetz is an Assistant Professor of Special Education at Oakland University. She has published several studies and book chapters on adolescence and Asperger’s Syndrome and interventions for secondary students with ASD. She has presented at AERA, Asperger Society of Michigan, Council for Educational Diagnostic Services, and CEC.

Nick Dubin, M.Ed., Psy.S
Doctoral Student in Psychology
Michigan School of Professional Psychology

Nick Dubin is a doctoral student in psychology. He has published a book about Asperger's Syndrome and Bullying and 2 DVD's through Jessica Kingsley Publishers. Mr. Dubin has presented at ASA, keynoted for the ASA of Michigan conference in 2005 as well as presented at 40 other conferences and workshops.

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