Academic journal article The Journal of Speech-Language Pathology and Applied Behavior Analysis

The Experiences of "Autism Mothers" Who Become Behavior Analysts: A Qualitative Study

Academic journal article The Journal of Speech-Language Pathology and Applied Behavior Analysis

The Experiences of "Autism Mothers" Who Become Behavior Analysts: A Qualitative Study

Article excerpt


Over the past 15 years there has been a dramatic increase in the diagnosis of autism. At the same time, the number of professionals qualified to coordinate intensive behavioral intervention programs has been limited and often prohibitively expensive. For a variety of reasons, including the desire to address the growing need of qualified professions, some parents of children with autism have chosen to enter the field of applied behavior analysis (ABA) as professionals. To do so, they have completed coursework and supervised practicum experiences leading to the credential known as Board Certified Behavior Analyst (BCBA). This paper describes a pilot study into the backgrounds and experiences of six such "autism mothers" who pursued this course. Qualitative research methods were used to explore the participants' transition from the role of mother to the additional role of ABA professional. Also explored were the participants' perceptions regarding both sides of the parent-professional partnership and their recommendations for training other parents of newly diagnosed children with autism. To place this study in context, it is helpful to review some key issues regarding the role of parents in the history of autism, in the search for autism treatments, and in the process of intervention. It is also helpful to consider the experience of parents living with autism more generally. A consideration of these issues will be followed by a description of the methods and a summary of the results.

Parents Defining the History of Autism

The term "autism" was first identified in 1943 by Dr. Leo Kanner, a pediatric psychiatrist at Johns Hopkins Hospital. At about the same time, Hans Asperger, an Austrian pediatrician described a similar albeit milder form of the disorder now known as Asperger's Syndrome. During this post-war era, the field of psychology was dominated by psychoanalysis, so autism was quickly deemed a psychoanalytic disorder and its cause, according to Bruno Bettelheim, was presumed to be the lack of love that cold, and demanding "refrigerator mothers" accorded to their children (Carmichael, 2006).

Bettelheim's theory began to crumble in the 1960s owing to the work of a psychologist by the name of Bernard Rimland. Dr. Rimland became interested in autism when his own son began to present with symptoms of the disorder and when it became clear that the psychoanalytical framework could neither explain nor treat his son's condition (Rimland, 1964). Rimland knew that his wife did not behave in a cold and uncaring manner towards their son, and after an extensive review of the existing literature, he began to view autism as a neurologically-based developmental disorder. In 1964 Rimland published his ideas in a book called Infantile Autism, and in 1965 he founded the Autism Society of America. From this point on, parents began to classify autism as a neurologically-based disorder and by the early 1970's most professionals stopped blaming mothers for their children's diagnosis. However, autism was not recognized as a unique clinical diagnosis, separate from childhood schizophrenia or mental retardation, until the 1980s (Kantrowitz & Scelfo, 2006).

Over the past 15 years, an awareness of autism in our culture at large has been heightened by the dramatic increase in the incidence. Currently, one in every 150 American children is being identified with the diagnosis. Among the school-aged population in Pennsylvania, for instance, the number of students diagnosed with autism rose from 346 in 1993 to 5,805 in 2003. This is a 1578% increase over a 10 year period, and it is very close to the 1055% rate of increase reported by the U.S. National Department of Education (Wilson, 2006). Based on these figure, it can be argued that the United States is in the middle of an autism epidemic.

Given the growing incidence of autism and of the profound ways in which an autism diagnosis changes the lives of families, parents have once again taken a leadership role in the search for a cure. …

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