Professionals, Parents, Self-Advocates, and Social Movements

by Dora Raymaker

Published March 17, 2009 @ 10:40AM PT

Autism and social movements: French parents' associations and international autistic individuals' organisations by Brigitte Chamak is a sociological analysis of three different perspectives on autism, as well as French versus North American (behaviorist) models of autism, and the role of the Internet in the whole shebang.

Psychiatric professionals in France who according to the paper, view autism largely as a severe psychosis that can yield to psychoanalytic methods, are one perspective. According to Chamak,

"This [psychoanalytic] approach, which has long prevailed and remains predominant in France, led to conflicts between the parents' associations and professionals in the late 1980s, when changes occurred at the international level (classification, autism aetiology and interventions)."

The parents' associations (roughly analogous to parent-run advocacy organizations in the U.S.) revolted against being seen as the cause for their child's difficulties began to distance themselves from professionals and advocate for behavioral approaches to intervention.

The actions of the parents' associations involve the identification of a problem: the psychiatric monopoly of autism interventions. The associations blame psychiatrists for fuelling the parents' guilt feelings and refusing new modalities of intervention. They demand the transfer of autism interventions from hospital to school and the training of professionals to educational and behavioural methods. They elaborate their grievances in terms of a problem-solving schema and refer to the North American model of autism.

Contrasting to both parents' organizations and psychiatric professionals, Chamak brings in the perspective of autistic self-advocates and the recent history of both the autistic self-advocacy movement and the larger disability rights movement of which it's a part,

Autistic individuals who are able to express themselves, insist on the importance of their experience to understand their situation and solve the problems encountered. Some of them want to have the right to oversee research and the policies affecting them, but also the right to intervene in such activities. They want to be involved in the activities of specialists, thereby remodelling their own identity, and some of them become professionals of autism... To the objectives of providing mutual assistance and support, they add the political objective of defending the rights of autistic persons.

And what of the role of the Internet in all this? On the bright side, for parents' associations and autistic self-advocacy groups, the Internet provides access to medical and research materials, giving laypeople the ability to directly challenge professional opinions from an informed position as well as achieve independence from professionals. For self-advocates, the Internet has provided a medium for creating community, culture, exchange of ideas, and organizing civil action. On the darker side, the Internet also creates new confusions. Chamak notes, "especially concerning the aetiologies and the therapies of autism. It has now become difficult to distinguish between actual information and advertising."

From a study on the women's rights movement Chamak summarizes a three stage process in social movements "First, affiliation, through a process of group membership and sharing of interests; secondly, a rejection of traditional definitions for that group's status in society; finally, individual problems become political demands when the inability to attain a decent life is seen as a consequence of social institutions or social inequality rather than personal failure."

This process seems to apply to both parent and self-advocacy groups, but what is being rejected and what is identified the causes of social inequality are frequently very different for each group. Are there any common foundations that can be shared in working toward a common goal, or will the professional vs. parent vs. self-advocate tug of war in society and policy (and blogosphere) go on?