The process of transitioning to adulthood is always difficult for parents; more so when their children have special needs. For parents of young adults with ASD the challenges are manifold, including but not limited to financial problems, social difficulties and long term care and planning. Long term planning is often referred to independent living and/or housing.
To explore the experiences of parents, the author had conducted a qualitative study as a doctoral research student in Yeshiva University’s Wurzweiler School of Social Work, New York. The study’s uniqueness lies in its focus primarily on the parents of young adults with ASD and their strengths and concerns. The idea of the study was to understand how parents and caregivers plan long term care strategies for their young adults with ASD. In the available literature, this aspect of autism research is not readily available mostly due to the unavailability of parents of young adults with ASD and their unspoken needs.
Details of the Study
This was a qualitative study of a select group of parents of young adults with ASD who have faced or are facing significant challenges in the transitioning process. The three primary research questions were: 1) What barriers are faced by parents during the transition out of mandated educational services to services addressing community inclusion? 2) What kind of necessary supports encourage caregivers to pursue continuing services? 3) Has a greater awareness of ASD increased the access to appropriate services?
During the study the interviews were audio recorded. The qualitative data was initially analyzed manually by audio recording transcription, triangulation and constant comparison. Following this, the data was technically analyzed by the Atlas-ti software (http://www.atlasti.com/) and open coding through which the primary themes were identified. The data was divided into quantitative and qualitative codes to understand the parents’ psycho-social support system.
The quantitative codes included age, gender and kinds of medical support available for the individual with ASD. The codes also included religious identity of parents, their marital status, and number of children they have to understand sibling support. Parents were also asked if they were the primary decision makers for their child. The qualitative codes focused on the ambiguous loss for parents after they received their child’s diagnosis, their awareness about autism, and their concerns and coping strategies. Qualitative codes also included information about parents’ social interactions to understand friend and family support and perception of their feelings of hope and hopelessness. Parents qualitatively shared information about their experience with accessing available services, their sense of confusion in decision making and the barriers they faced in seeking services, especially when seeking long term support. These frequently occurring qualitative codes were selected to generate hypotheses and prepare recommendations for future research.
Results of the Study
One of the themes that repeatedly occurred was concerns about independent living and housing. Parents expressed their concerns affecting everyday life. About 63% of the participants were working full time and 47% of the parents interviewed were associated to special education services either as volunteers or as professionals. All participants had insurance for their children and had medical services as their only continuing resource. However, 77% of them had limited insurance coverage. Only 55% of the parents who participated in the study had their children enrolled in post-high school services with varying levels of satisfaction. It was evident that parents were not enthusiastic about the services available after high school as they are not age-appropriate and cease to help parents in identifying meaningful services for their young adult children with ASD.
Leaving home is a major transition for any young adult. Parents from certain ethnic groups believe that group homes disconnect the individual from the family. The study supported that those parents who consider the choice of sending their young adults with special needs to live in the community face higher levels of anxiety. They feel that their young adults will not be able to adapt to the new environment or will have a tough transition with new services, program schedules and/or unfamiliar professionals. As parents confront the various stages of transition, they also get a hands-on experience with the changes in service facilities and institutional options. During the transition process, professionals in service-providing agencies refer individuals with developmental disabilities to other agencies for vocational training or they provide options like group homes and/or day habilitation programs to parents. However, the new arrangement may not be acceptable to the individual or his/her family. Due to previous experience with services, inadequate facilities, and/or inappropriate age levels of other program participants, many parents decide to forego continuing adult services.
Young adults with ASD face “significant obstacles” in their “way to college, work, community participation and independent living” (Hendricks & Wehman, 2009). Helpful guidance for choosing services and effective case planning along with proper housing can create a positive impact on individuals with ASD and their families, yet many autistic young adults stay confined to home while aging parents struggle to address the basic needs for their child’s independent living.
Developing housing facilities is not easy either, given the current lack of funding especially in the non-profit world. Service providing agencies have usually voiced their concerns about trickling down of financial resources for much needed programs. They also complain that certain neighborhoods often try to stop group homes from functioning in their locations due to their resistance towards people with special needs. However, it is a fact that many group homes tend to be inappropriate, especially for high functioning individuals with ASD. Additionally, news related to abuse and neglect by the staff within agencies’ premises demoralize parents to allow their children to stay there. Parents express concerns about safety factors and various levels of potential risks.
Concerns about daily life and general inclusion in the community are major stressors for the parents. Answering the questions on these issues was the most difficult process for them. They demonstrated stress, fear and hopelessness. One of the parents stated, “I find it very discouraging because I know that she does not have the basic skills to lead a life alone. She cannot live by herself. Generally she is a very happy child, but if she cannot live alone, then she needs to stay at home, and I am not sure if my husband or I are ready to quit either of our jobs to take care of her at home. We don’t want to put her into an institutionalized setting because we fear that she will be taken advantage of…” Another parent who is in the midst of preparation said, “I don’t think that he has any future and he should live with his family. I try to structure his time like…we are getting old and if we are gone then at least we should leave after building a structure for him….If I am not alive and my husband is not alive, I can’t force my children to take him as their own child, no! They have their own lives, everybody has their own lives. I don’t want to separate him from his family either, so we think that if my other son and daughter are living elsewhere, then we would set up a basement up for him and keep him in the home environment. If somebody can take care of him, then they can keep an eye on him. But I can’t tell them to keep him. We are planning to buy a house and set the basement for him. So when we are not there, he can live there, he has a place to live.” This parent seeks to create an environment according to their child’s needs and hopes to get help from their other children but cannot blindly rely on them because they have their own families for which to care. Also, for many parents, buying a house and planning to set it for their child with ASD is financially not possible.
The study highlighted parents concerned about their child’s future. 68% of the aging parents shared that they are looking for private caregivers for their children while 63% hope that their other children can take care of the sibling with ASD. In each response to the research questions, participants demonstrated fear of the unknown, and worries associated with their children’s future. Each parent believes that their child will be vulnerable and isolated once the parents are no longer there for support.
The responses reflect that parents of young adults with ASD are stuck in time, since they are confronting a dead end in their lives and in the lives of their children. Through their answers, parents have demonstrated hopelessness due to lack of adequate support for successful social inclusion, vocational support and housing. Services that individuals with ASD could access through the county, city, or the federal government usually become private and expensive services after they graduate from the mandated school services. Many parents are unable to afford these services. As a result, parents realize that their financial resources are inadequate or nonexistent, especially if they are ineligible for loans or charities. The services that are available are not necessarily age appropriate or adequate and, in the case of housing, many parents find the option risky considering their child’s vulnerability. Awareness and knowledge that facilitated access to services became impractical. Many parents struggled to fit their knowledge with available resources, especially with the housing facilities, while thousands of young adults with ASD wait for a home away from home.
Veera Mookerjee, PhD is Director of Preventative and Senior Services at South Asian Council for Social Services (SACSS). If you wish to contact the author, please call (914) 338-5933 or email firstname.lastname@example.org.
Hendricks, Dawn R. & Wehman, Paul (2009). Transition from school to adulthood for youth with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 20(10), pp.1-12