Adult Uncertainties and Parents' Enduring Concerns
by Chloe Silverman
January 20, 2016
In 1977, Katharine Sangree Stokes, the mother of a “nonverbal, 21-year-old autistic child,” wrote about the unmet needs of her son as he grew into young adulthood. Her observations, she said, were “the fruit of years of thought, the kind that occupies parents in the long nights after their more immediate cares are set aside. This thought expresses itself in questions, not answers. Generally speaking, one does not know the answers” (289). Stokes’s article and the responses to it, contributions to a parent-edited and authored section of the Journal of Autism and Childhood Schizophrenia (now the Journal of Autism and Developmental Disorders, one of the main autism research journals), is in some respects a product of its time. Stokes describes her son as a child trapped in a man’s body, a characterization that many advocates would sharply contest in the present. She uses terms like “the retarded” and “severely handicapped” that we no longer use. She is concerned very specifically about how policies of normalization, the commitment to allowing people with disabilities access to the typical experiences of daily life that non-disabled adults take for granted, may paradoxically limit opportunities for her child. Normalization was a theory very much in vogue in the 1970s among advocates and service providers. In many respects, though, Stokes’s eloquent reflections demonstrate how little progress has been made in identifying and serving the needs of adults with autism and their families in the almost 40 years since she wrote.
Writing to an audience of basic researchers, service providers, and parents, Stokes identified a few key concerns amongst the thoughts that had kept her up at night. The first involved her son’s continuing growth and development. As Stokes’s son aged out of the educational system, he needed not only safety and security, but also continuing opportunities for learning and growth, both intellectual and emotional. “Development of an interpersonal human being takes place in interaction with caring others. This he has had at home. If our son is to continue to grow in awareness of others, his future home must also include persons who can care for him as an individual” (289).
Stokes also lamented the absence of truly engaging activities for young adults like her son. Boredom, as damaging for her son as for any other young person, often led to destructive behaviors. Too often, available work was tedious and lacked the kind of caring interactions with others that might push and challenge him. Her son needed to see that his efforts could have an impact on the world around him. “There needs to be creative problem solving that goes beyond the assembly line and sheltered workshop paradigms. This should include exploration into the kinds of activities that have meaning to autistic people and a development of the requisite skills” (297).
Stokes also worried that programs to prepare her son for adult life focused too much on making him appear typical and too little on what was best for him as a whole person. She noted that all too frequently “we may be talking about teaching the retarded or autistic person how to be inconspicuous, how to be socially inoffensive, how to behave in ways that will not make trouble for the adults who come in contact with him, who care for or supervise him” (295). But behaviors that might trouble adults also served useful purposes for her son: Thumb sucking not only comforted him but also alerted those who encountered him, including police officers, that they needed to calibrate their response to him accordingly.
Finally, she wrote that it was crucial that her son not merely live with competent caregivers or be guaranteed continued bodily safety and security. Programs needed to find ways to cultivate joy not only in the people being served but also in the people providing services. “How,” she wrote, again using language that was current at the time, “can one define and clarify the satisfactions that autistic-retarded persons can provide for the nonretarded in order that meeting the needs of the autistic-retarded people can be and will remain a source of delight to the caretaking person?” (295).
Stokes’s insights were important: Existing opportunities for children like her son, with significant challenges and a need for continued support, rested on a series of faulty premises:
- Experts assumed that, in the absence of a potential cure, they were justified in focusing exclusively on custodial care and on maintaining safety and security
- Where young adults received educational opportunities, instruction aimed at helping those young adults appear more typical
- They operated under the assumption that providing services for young people with autism was a burden that could be compensated only with respites and salaries
- They focused on rote activities and employment that engaged only existing skills (if that).
In contrast, Stokes called for attention to the continued development and emotional growth of adults like her son, and the centrality of caring, involved communities in that growth. She argued for the necessity of meaningful employment that responded to individual strengths and interests, providing additional motivation for that continued growth. She recognized that compelling young people with autism to eliminate behaviors that marked them as different was a questionable endeavor, and although her perspective stopped short of current calls to acknowledge unique autistic strengths in educational settings, Stokes recognized that sustainable approaches to including autistic young people in communities needed to start with what they had to offer, in addition to cataloging their needs.
In the intervening four decades, disability rights scholars, health services researchers, self-advocates, and others have both provided further support for and better enunciated her arguments. There have also been some key policy improvements. Lawmakers introduced the Medicaid waiver, which allows young adults with disabilities to maintain their benefits while living at home or in their communities rather than in institutions, in the early 1980s (Duckett and Guy, 2000). The Individuals with Disabilities Education Act or IDEA (then called the Educational for All Handicapped Act), only two years old when Stokes wrote her article, has resulted in policies of inclusion in public educational settings. As a result, children with autism have better preparation as they reach adulthood, although services decline sharply after that point. In the present, many groups lobby for or design innovative community housing opportunities for young people with autism (Tortorello, 2013).
These are important achievements. Yet, as the 2015 National Autism Indicators Report (Roux et al, 2015) makes clear, many young adults with autism struggle: They miss out on employment and chances for higher education, they have difficulty accessing the supports they need, and they are often isolated from their communities. And as Stokes recognized back in 1977, we as a society badly need to develop creative options for young adults with autism, ones that value their strengths, locate them within caring communities, allow for continued growth and opportunity, and that also remain attentive and responsive to their individual needs.
Duckett, Mary Jean, and Guy, Mary R. “Home and Community-Based Services Waivers.” Health Care Financing Review. 22 no. 1, (Fall 2000), 123-125.
Roux, Anne M., Shattuck, Paul T., Rast, Jessica E., Rava, Julianna A., and Anderson, Kristy, A. National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, 2015.
Stokes, Katharine S. “Planning for the Future of a Severely Handicapped Child.” Journal of Autism and Childhood Schizophrenia, 7 no 3 (1977): 288-298.
Tortorello, Michael. “The Architecture of Autism.” The New York Times, October 9, 2013. Online at http://www.nytimes.com/2013/10/10/garden/the-architecture-of-autism.html
Chloe Silverman, Ph.D. is an Associate Professor in the Department of Politics and Center for Science, Technology & Society at Drexel University. Her 2011 book, Understanding Autism: Parents, Doctors, and the History of a Disorder (Princeton University Press) explored the history of the autism diagnosis and the role of parent advocates in autism research programs.
The views expressed in this blog are the author's own and not necessarily those of the Life Course Outcomes Research Program.