Recent updates by Center for Disease Control and Prevention (CDC) indicate that 36,500 children out of the 4 million born in the United States will have an Autism Spectrum Disorder (ASD) diagnosis. An individual with ASD will require care and services for up to 50 years, according to CDC, at a cost of $3.2 million. This includes early intervention services, ABA therapies, social work services, medical costs, habilitation services and residential services for those individuals in group homes or community residences. The average medical expenses for an individual with ASD exceed those of an individual without ASD by $ 4,110 to $ 6,200 annually. Meeting needed expenses is a major financial stress for parents of children with ASD. Planning for the future is not easy. Stress increases as the individual with ASD reaches young adult hood and transitions from mandated school services. Many parents are unprepared when mandated services through the school system cease to exist. Parents are on their own to decide whether to continue services following their autistic child’s high school graduation.
Details of the Study
A qualitative study focusing on parents of young adults with ASD was conducted by the author while a doctoral student at Yeshiva University’s Wurzweiler School of Social Work, New York. The study is unique since it is focused on the phenomena of hopelessness or hopefulness among parents as they face the challenges of their child transitioning into adulthood. This is an aspect of ASD research that has never been explored before. Twenty participants from New York, Ohio, Texas, and San Diego volunteered to be interviewed for the study. Recruitment of participants was done through agencies serving ASD clients and advertising the study in the Winter 2011 issue of Autism Spectrum News. The participants are all parents of individuals with ASD ages 14 years and above.
The study was designed to identify: 1) What barriers are faced by caregivers during the transition out of mandated educational services to services addressing community inclusion? 2) Has a greater awareness of ASD increased the access to appropriate services? and 3) What kind of necessary supports encourage caregivers to pursue continuing services?
The interviews were audio recorded and the qualitative data that was analyzed by the Atlas-ti software (http://www.atlasti.com/) and by identifying inter-linked themes that reflect the phenomena of hopefulness and hopelessness. Seventeen themes were originally identified by the dual process which were later combined to ten themes which were identified as having the highest number of occurrences during the interviews. These themes are: 1) Awareness about ASD; 2) Coping strategies associated with the service structure; 3) Initial confusion related to the ASD diagnosis; 4) Social isolation; 5) Personal isolation; 6) Inadequate services; 7) Concerns affecting everyday life; 8) Self-guilt and frustration; 9) Social and professional barriers; and 10) Social and professional supports. Each theme is supported with quotes from the interviews.
Results of the Parent Interviews
The majority of the parents interviewed expressed feelings of hopelessness when asked, “What does the future of your child look like to you?” While some participants got extremely emotional, others said that they would not think about it as “there is no future.” Participants who expressed that they had been satisfied with the school structure are the same caregivers who expressed that they are not prepared for the transition, and did not feel comfortable to move out of their existing mandated services structure to a situation where “nobody is obligated to help.” Caregivers found available resources for young adults with ASD to be extremely limited, and the services that were available were not age-appropriate. While all the participants have had to utilize medical services, many still take their children to a pediatrician. Parents expressed that post-school services are expensive, are deemed experimental, or are not covered by insurance. Some participants have enrolled their adolescent sons and daughters in continuing services are not satisfied, but are accessing these services just for the sake of maintaining a structured schedule for their children. Participants requested that professionals be better trained to ensure service efficacy.
These findings are explained in part by social capital theory. Social capital is the form of social, personal, financial, and professional resources created by people to ensure help when in need. Based on the experiences they have had, parents develop their identity, enhance their role of being a primary decision maker for their child, and develop optimism and hopefulness as they see their child growing and learning new skills at school. Parents start to expect that these skills will help their child progress into future areas such as vocational training, a community college for further studies, and a better life in the larger social community with family and friends who provide care and encouragement. As for professional services, parents strongly believe that they will be available and remain supportive after they reach adulthood, and that they are entitled to this professional care. Interestingly, caregivers develop their coping strategies based on the associated service structures, and as a result isolate themselves from traditional support systems including family, friends and even spouses.
Caregivers do not identify their isolation until the associated service structure disappears and they find themselves both socially and personally isolated. The reality starts to occur when, by policy mandate, parents are told by their child’s school that they need to have a transition plan, as services will change after their children age out of school. For many others, the collapse of the school structure hits harder when they realize that post-high school professionals are not obligated to help and such services are not mandated. The social capital that the parents had invested in and had while their child was enrolled in school, their established coping strategy, which counted well while their child was in school, as parents see it, turns into an illusion. The social investment that parents had made of their time, finances, and emotions in building resources and helpful connections are lost immediately after the adolescent with ASD graduates from high school. Parents are left in a state of social bankruptcy that is losing their social capital. The participants shared their concerns of everyday life which included: fear about the safety of their children and reluctance about asking others to care for the adult with ASD once the parents were gone. As social capital resources dwindle, it is interesting and disappointing to note that the experience that had initially lead to the development of hopefulness takes a sharp turn pointing towards hopelessness.
When the school support structure collapses, parents confront problems associated with inadequate services. When they have to compromise with what they get as a replacement, they get frustrated and feel guilty that they are not doing enough for their adolescent child. To these parents, it would seem that awareness about ASD has become meaningless as it cannot be appropriately used. It is hard for them to identify new social and professional supports but is common to identify social and professional barriers. The resulting chaos is similar to the initial confusion parents had encountered when their child was displaying unusual behavior and a diagnosis had not been made. The difference being, at that time the individual was a child and the parents were relieved to get a diagnosis since it provided direction for action. Now the diagnosis is still there but the child has become an adolescent with increasingly complex behaviors and associated problems. Caregivers expressed feelings that they are stuck in time and are able to visualize the virtual dead end in their lives as their autistic children fail to carry their legacy to the future.
With more serious challenges for parents and caregivers of young adults with ASD, these parents need to develop a new decision making capability. The transition challenge leaves all parents with a serious question: “What is the future of my child when I am no longer around?” It was difficult to see parents cry and express concerns about the future. This study demonstrated the unspoken psycho-social and emotional involvements that parents face.
The study identifies how parents invest their social capital to ensure a better and productive future of their child only to lose it as their child reaches adolescence. The hopefulness that nurtured parents from professionals and mandated services over the school years; it is now replaced by hopelessness.