OAARSN Book Review
for Darla: Challenges for Family Care and Professional Responsibility:
The Case of a Pregnant Adolescent with Autism.
This important book is far from an easy or comforting read. "Darla’s story entails the vulnerability not only of an adolescent with disabilities, but of other family members, and even of professionals as they attempt to serve her needs. The extremity of the sequence of events in Darla’s case may be exceptional, but the issues that arise have wide application." (from the Introduction).
The authors describe their unusual research methods in these words (p.4): "In chronicling the events of Darla’s story, we saw ourselves primarily as facilitators of communication and organizers of information. We wanted to convey the variety of points of view [of] people familiar with Darla’s situation. We tried to limit our interpretations of circumstances and participants’ perspectives because we wanted those involved in the story to contribute to the story in their own ways. As our research progressed, we were further convinced that capturing the insecurity, doubt, ambivalency and conflict—both within and between participants—was particularly important... Often the professional literature, especially "how to" textbooks, implies that a consensus exists regarding meeting needs and delivering services to people with disabilities. On the contrary, our research has led us to the strong conviction that tentativeness, anxiety, and misgivings often surround the actions of those providing care and well as those who receive care."
"Darla forces us to question our assumptions and beliefs about our fellow humans. As educated professionals, we expect to be able to do our work, to be helping people in the ways we are accustomed. Darla reminds us that the real world is complicated and never easy; she forces us to struggle with our own sense of helplessness and despair when the real world does not live up to our expectations. Although she has not language that we can understand, Darla teaches us...." (from the Foreword).
"Darla’s story presents a less than totally positive commentary on the tendency of the state’s legal and educational systems to be at odds with family wishes and client needs, and to function at cross-purposes with each other. It demonstrates the gaps in planning as professionals and families attempt to communicate, collaborate, and provide for the protection, care and education of people with disabilities. Individuals such as Darla require a strong and extensive commitment from agencies to work co-operatively. ...The story, sadly, forces the realization that supportive legal, medical, social welfare, mental health, residential and educational systems so desperately needed by people like Darla, are just not in place." (p. 152).