Autism and social movements: French parents ... - Wiley Online Library

0 downloads 151 Views 134KB Size Report
Keywords: autism, social movements, parents' associations, autistic people's associations, disability .... understand ho
Sociology of Health & Illness Vol. 30 No. 1 2008 ISSN 0141–9889, pp. 76–96 doi: 10.1111/j.1467-9566.2007.01053.x Brigitte Sociology SHIL © 0141-9889 Original XXX Autism 2007 and Chamak Foundation Articles ofsocial Health movements for &Ltd Illness the Sociology of Health & Illness/Blackwell Publishing Ltd Blackwell Oxford, UK Publishing

Autism and social movements: French parents’ associations and international autistic individuals’ organisations Brigitte Chamak CESAMES, Université Paris Descartes, France

Abstract

The aim of this empirical investigation is to analyse the social movements brought about by autism-related issues. It is suggested that both the autism-category changes in the late 1980s, and the development of educational and behavioural methods in the United States, have given rise to a large-scale mobilisation around the changes in the definition of autism and interventions in many countries. The present paper highlights the historical dynamics of the mobilisation of French parents’ associations and the engagement of autistic persons’ organisations. The role of the French parents’ associations has been studied over the last 40 years to show how they have contributed to shaping public policy in France and how they have favoured the American model of autism despite the French professionals’ resistance. At the international level, the newly-born associations of autistic individuals have introduced new actors who sometimes reproach the parents’ associations for speaking on their behalf. These new associations, such as self-help groups, have a political identity problem. Their members no longer want to be considered as patients but as individuals with a different cognitive mode of functioning. Their actions can be analysed in the broader context of the disability movement. If the disability movement is considered as the latest generation of social movements, the action of autistic persons can be viewed as the latest generation of the disability movements.

Keywords: autism, social movements, parents’ associations, autistic people’s associations, disability movement, self-help groups

Introduction Social movements constitute one of the principal social forms through which collectivities voice their grievances and attempt to promote or resist change in a society. Snow et al. (2004) defined social movement as ‘collectivities acting with some degree of organisation and continuity outside of institutional or organisational channels for the purpose of challenging or defending extant authority, whether it is institutionally or culturally based, in the group, organisation, society, culture, or world order of which they are part’. For them, social movements and the activities they sponsor have become ‘a kind of fifth estate in the world today’. If so, understanding our societies clearly requires some knowledge of social movements and their related activities. Turner (1969) argued that the emergence of a © 2007 The Author. Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd. Published by Blackwell Publishing Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA

Autism and social movements

77

significant social movement requires a revision in the way people look at some problematic condition or feature of their life, seeing it no longer as a misfortune, but as an injustice. Goffman (1974) suggested that rebelling against authorities is partly contingent upon the generation and the adoption of an injustice frame, a mode of interpretation that deems the actions of an authority system as unjust, and thus legitimates non-compliance. Taken together, these observations buttress the contention that what is at stake is not merely the presence or absence of grievances, but how such grievances are interpreted and the diffusion of those interpretations (Snow et al. 1986: 11). The aim of this empirical investigation is to analyse the social movements brought about by autism-related issues. I suggest that both the autism-category changes in the late 1980s and the development of educational and behavioural methods in the United States have given rise to a large-scale mobilisation around the changes in the definition of autism and related interventions in many countries. These contextual factors have induced a revision in the manner in which parents’ associations and some autistic persons interpret autism. On the one hand, the parents’ associations have moved from a resigned and submissive attitude towards the psychiatrists’ decisions to an offensive posture aiming at redefining autism not as a psychiatric disease but as a handicap1 which can be counterbalanced by intensive educational and behavioural methods. On the other hand, people who recognise themselves as autistic persons, and are able to speak, have begun to fight so that their difficulties should not be stigmatised as a mental disease and to defend the recognition and acceptance of their differences. In this struggle, they have shifted from self-blaming to structural blaming, from victim-blaming to system blaming. This transformation process has been identified as a transformation of domain-specific frames by Snow et al. (1986) who considered this to be central to the participation process in the self-help movements (Katz and Bender 1976). The success of the mobilisation efforts rests in part on effecting changes in the way their potential constituents view not only their life situation, but also themselves. Like Joel Best (2001) who wondered why some ideas experience more success than others on the international stage, we can examine the success of the new American definition of autism and the related interventions. How have the new American discourses on autism influenced many countries? How has this diffusion process occurred? Joel Best (2001) distinguished three elements: claims that a problem exists and requires some action; channels for the claims, which may range from close personal networks to the mass media; social actors who transmit and those who choose whether these claims should be adopted. In the case of autism, the parents’ associations have played a crucial role in the diffusion process. The adoption of a new international classification of autism with enlarged diagnostic criteria under the category pervasive developmental disorder (PDD) has allowed parents to put a name on something inexplicable, to be able to meet other families, and to get help from social services and special schools (Hacking 2006). In some countries, autism has become an advocacy disorder, which contributes to the increased rate of diagnosis. Militant middle-class parents fought to have their problem taken seriously, and today a child with learning and social difficulties will receive more attention if he is labelled autistic (Hacking 2006). The first fight of the parents’ associations is to get a diagnosis and then to benefit from the educational and behavioural methods. In France, where psychoanalysis is still widely spread, these methods are not appreciated by psychiatrists and professionals in favour of psychoanalysis. They argue that the behavioural methods produce robot attitudes. Conversely, they favour institutional therapy with a psychodynamic approach founded on psychoanalysis and group psychology involving © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

78

Brigitte Chamak

different professionals with the aim of fostering exchanges through different interventions in the field of therapeutics, education, social interactions, sport and cultural activities (Hochmann 2006). However, more and more parents denounce this approach as favouring the parents’ guilt feelings and not ensuring stimulating training and school attendance for the children. The French professionals’ resistance to the American model is not only concerned with intervention but also with classification. In the French classification, autism is still considered as a rare and severe psychosis. The terms PDD and Asperger syndrome (AS) were only used in the 2000 version of this classification and numerous psychiatrists consider that AS diagnosis is an Anglo-American construction. The restricted French concept of autism and the hostility towards behavioural methods have been fought by the French parents’ associations since the 1990s. However, it has been, and still is, difficult to counter the positions of psychiatrists and professionals despite the associations’ increasing power over the last 10 years (Théry 1986, Barthélémy 2000a, 2000b). The present study pursued two objectives: (1) to analyse the difficulties encountered by the French parents’ associations in imposing the American model of autism; (2) to compare the parents’ associations claims and the autistic persons’ grievances. This last point is particularly relevant considering the French context in which some sociological studies present parents’ associations as patients’ associations without taking into account the specific claims of the patients or handicapped persons themselves (Rabeharisoa and Callon 2000, Rabeharisoa 2006). Generally speaking, disability studies are largely neglected in France (Albrecht et al. 2001). The parents’ associations with autistic children have contributed to public awareness, like any other associations (Barral et al. 2000), and have taken on an ever-increasing role in shaping public policy and actions in the field of autism. However, the newly-born associations of autistic individuals are starting to change the landscape by introducing new actors who sometimes reproach parents’ associations for speaking on their behalf. These new associations, such as self-help groups (Barbot 2002, Broqua and Jauffret-Roustide 2004, Jauffret 2000, Katz and Bender 1976, Pinell et al. 2000, Rabeharisoa and Callon 2000, Room 1998) or disability movements (Albrecht et al. 2001) have three claims: first, an epistemological claim, so that their experiences of autism can be considered as knowledge; secondly, a political claim, so that their problems are granted particular attention by public officials and professionals; and thirdly, an identity claim, to be recognised as true partners (Rabeharisoa 2006). The present paper highlights the historical dynamics of the mobilisation of the French parents’ associations and the engagement of the autistic persons at the international level to understand the political impact of their actions and the role of the autism category transformations. The analysis of these mobilisations is intended to identify the nature of the political work both within and outside these groups (the media, public opinion, public authorities, etc.). I have tried to understand how the representatives of these groups act to mobilise their members, how they proceed to have their claims taken into account, and how they act on political decisions to modify the law. To do so, I have used the analytical frame of new social movements (Snow et al. 1986, Albrecht et al. 2001), which enabled us to underline the influence of new social movements (e.g. civil rights, women’s liberation, gay, ethnic and disability movements) on the development of the autistic persons’ organisations. It also made it possible to highlight the conflicts between parents’ associations and professionals, in which psychiatric power and knowledge are questioned. A conflict between the parents’ associations and autistic persons, who construct a collective identity, has also been identified. The literature on new social movements has shown the importance of such conflicts in the construction of actions and representations (Klawiter 1999, Mueller 1994). © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

Autism and social movements

79

Methods The historical dynamics of the mobilisation of the associations has been assessed by different methods. One of them concerned the discourse produced by the associations to describe their actions: newsletters, publications, websites, interviews and colloquia. We clearly distinguished parents’ associations from autistic persons’ associations: French parents’ associations were identified by an investigation on the Internet and the newly-born Frenchspeaking autistic people’s association was discovered during interviews with autistic people. Fifteen in-depth interviews were performed. Qualitative interviews were also conducted with 20 French parents whose children had been diagnosed with PDD, for a better understanding of the difficulties they encountered. French reports and laws on autism were studied to address the question of the political impact of the parents’ associations. We then decided to analyse the autistic people’s movement at the international level to understand how the first association, Autism Network International (ANI), emerged and which discourses and positions were adopted in comparison with the French ones. The ANI website and Jim Sinclair’s interventions were analysed (Jim Sinclair is one of the founders of ANI). A three-hour in-depth interview in August 2004 in Montreal with Michelle Dawson, a Canadian autistic person backed by ANI, showed that she explicitly referred to the feminist, gay, and minorities movements and thereby placed her action within the broader context of minority demands. In order to enter into the process of the relevant medical and scientific knowledge, books and publications on autism were studied.

The autism-category transformation and educational and behavioural methods In 1943, autism was defined by Leo Kanner (1943), and for the next 40 years, autism was reported to be a very rare disorder classified as a psychosis. In the late 1980s and the early 1990s, when the American and the international classifications were modified, the definition and representations of autism underwent huge changes. Diagnostic criteria were enlarged to include non-verbal patients as well as persons speaking but having social interaction problems and restricted interests. Today, the International Classification of Diseases (ICD) and the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) have defined autism as a pervasive developmental disorder (PDD) with the appearance of symptoms before the age of three, reciprocal social interaction deficits, verbal and non-verbal communication difficulties, stereotyped movements and behaviours, restricted and repetitive interests. In the United States, Canada and the United Kingdom, clinical concepts of a spectrum, or autistic continuum, have been widely accepted (Chakrabarti and Fombonne 2001, Rapin 2002). A child with language skills who experiences difficulties in communicating along with restricted interests satisfies the diagnostic criteria of PDD, so does a more severely affected child who has stereotypical movements and no verbal language. Such an extension of the diagnostic criteria and the more frequent detection of the disorder have inevitably led to an apparent increase of its prevalence. Until the late 1990s, the prevalence varied between two and five cases per 10,000. It is now estimated at one per 1,000 and even six per 1,000 for all PDDs (Fombonne et al. 2003). Some people say autism is increasing in frequency and talk about an epidemic, and parents’ associations currently play an active role in incriminating vaccines or environmental factors regardless of the fact that the definition of autism has evolved. Along with the high number of © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

80

Brigitte Chamak

diagnosed cases, lucrative markets associated with autism have appeared over the last 15 years: training programmes, books, special diet requirements, different behavioural methods, genetic tests and various biological dosages, as well as unorthodox therapies. Websites provide extensive information on these expanding markets and competing methods. For the associations, insisting on the increased prevalence and the diversity of the population with autism entails a more active mobilisation of the public authorities. It is a means to give more weight to their demands. The bigger the population, the more attention the government pays to the demands (Paterson and Barral 1994, Pinell 1987). Among the means to enlarge the autism spectrum was the inclusion of a new category: the Asperger syndrome. In 1994, AS was included for the first time in the DSM-IV under the category of PDD, hence emerging as a separate diagnostic category from autism (Atwood 1998). AS can be traced back to the work of a Viennese paediatrician, Hans Asperger, who published a paper based on the clinical observations of four boys referred to his clinic for educational problems (Asperger 1944). These children had normal intelligence and language development, but exhibited significant deficits in social and communication skills. The term Asperger syndrome first appeared in Wing (1981), who presented a detailed account of the main clinical features of the syndrome. While Asperger’s work was first published in English in 1979, it only began to receive greater attention in the 1990s when it was published in Uta Frith’s book (1991). With the following question ‘Is AS a disorder or a neurological difference that has been socially constructed as a disorder?’ Molloy and Vasil (2002) explored the complex issue surrounding the diagnosis of AS and in particular the role of schooling and special education within this social construction. The first educational and behavioural method, the Teacch (Treatment and education of autistic and related communication handicapped children) programme, was conceived by Eric Schopler in the 1960s in North Carolina. Teacch tried to reinforce whatever strengths the child might have had (Schopler et al. 1984). Once the child’s capacities have been assessed, priority is given to emerging abilities. An individually tailored programme requiring the parents’ active participation is then set up. In 1972, the parents’ associations succeeded in establishing that the programme should be financed by the state of North Carolina. Another mode of intervention, the Applied Behaviour Analysis (ABA), proposed by Ivar Lovaas at the University of California, then began to compete with Teacch. For the past 10 years in North America, the prevailing way to work with autistic children has been based on ABA, which is derived from the work of the psychologist B.F. Skinner, who showed, mostly in animals, that behaviour could be altered with repeated drills and rewards. In 1987, Lovaas published a study with huge repercussions. He reported that nine out of 19 autistic children taught for 40 hours a week with behaviourist methods had a better IQ (Lovaas 1987). At the earliest possible age (30 months), the child begins to work with a trainer. Anything good is reinforced with smiles and even sweets. Behaviour considered as bad is discouraged. The claim is that after such a training, with an assistant’s daily help, the child can enter the school system (Schreibman 2005). These methods aim to stimulate autistic children, to discourage their stereotypes and sometimes aggressive behaviours, and to reach school integration. These three perspectives coincide with the parents’ priorities.

Parents’ mobilisation in France The parents’ associations have participated in fostering the transformations of the autism category and the generalisation of the educational and behavioural methods which give hope to modify the gloomy fate of their children. In North America and in the United © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

Autism and social movements

81

Kingdom, these changes have occured more rapidly than in France where most psychiatrists and professionals are hostile to these transformations. The analysis of the historical dynamics of the French parents’ associations is a means to a better understanding of their difficulties in having their claims taken into account despite the increasing role of associations in France. French associations are regulated by the 1st July 1901 law. They intervene in the public sphere relying on private individuals and separate from the market, the family and state power. The interdiction to make profits keeps the associations further away from the market (Barthélémy 2000b). Their funds originate from member fees and donations. Public funds may be provided in some cases; the official recognition as being of public common interest entails its framing by public authorities and sometimes the donation of public grants. Associations have been constructed around the concept of collective interest, fed by lack of trust in both the bureaucratic public services and the tainted private sphere. The role of associations in developing and redefining public health policy became very important in France in the early 1980s (Théry 1986). Martine Barthélémy (2000a, 2000b) described the factors that fostered an ever-increasing reliance on associations during the 1990s, which included both a demand for less state intervention in the 1970s and a growing demand for a state that relied on personal initiative and citizens’ involvement. Associations were supposed to encourage sociability, solidarity and citizenship. Public authorities gave them a crucial role in voicing and framing social demands thus making citizens responsible for their acts, which satisfied associations because their members could gain more autonomy. This form of organisation now appears as the privileged vehicle for expressing demands and disputes, and represents a significant socio-political promotion for its members. What did autism mean before the recent social movement and how did this movement emerge in France? Before the recent social movement, autism was defined by psychiatrists as a severe and rare psychosis characterised by absence of language and social-interaction deficiencies. Many professionals used to consider that the mother’s behaviour was central to the genesis of autism. This conception has gradually evolved to fit with the American model (biological origin of autism and larger diagnostic criteria). However, resistance to behavioural methods is still strong, because they challenge the psychoanalytical concepts and interpretations along with the related interventions. For a long time, psychoanalysts did not hesitate to establish a causal link between family behaviour, most particularly the mother’s, and the development of autistic disorders (Appleton 1974). Since the early 1990s, however, and especially since Bruno Bettelheim’s death, this concept has been questioned (Sutton 1996). Bettelheim (1967) linked autistic withdrawal to the feeling of powerlessness in the face of an inescapable fate. He recommended separation from the parents to change the child’s environment and adaptation of the milieu to the child’s difficulties. After his death, some of the professionals trained by Bettelheim were the first to launch attacks against him and his theories. Today, Bettelheim is used as a scapegoat by parents’ associations, further denying the relevance of a psychoanalytical approach. This 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). Even though for many psychiatrists specialising in autism it is no longer used to determine a cause but rather a way to understand the child’s behaviour better and to help him overcome his difficulties (Hochmann 2006), the entire profession has been blamed. As some psychiatrists and psychologists have not changed their approach to autism, the most © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

82

Brigitte Chamak

demanding parents’ associations continue to criticise psychiatrists and aim to set up their own institutions. They adopt a mode of interpretation that considers the authority of the psychiatric system as unjust. Their actions should be viewed in the more global context of the redefinition of the social individual’s status in which autonomy, responsibility and personal initiative constitute normative values (Ehrenberg 1991, 1995, 1998). For the families, setting up associations allows them to voice their demands and to take initiatives on behalf of a users’ group (Paterson and Barral 1994). They provide an opportunity to intervene as an institutional mediator recognised by public authorities, other associations, as well as by scientific and medical institutions (Boltanski and Thévenot 1991). This study highlights the existence of three generations of associations in France. The first, founded in the 1960s, set up institutions to palliate the lack of governmental facilities devoted to mental handicap. The second, founded in the mid-1980s, set up institutions using the Teacch programme. The third generation emerged in the late 1980s and became more virulent in the early 1990s. Its members blame Bettelheim and psychoanalysts for the disastrous situation. They fight the domination of psychiatrists and follow the North American model, perceived as the reference for modernity and innovation, while France is viewed as archaic and under-developed (Chamak 2005a). The first generation of associations set up the first day hospital for children in France: In the 1960s, the parents’ associations denounced the lack of financing and facilities devoted to autism. ASITP (Association au Service des Inadaptés ayant des Troubles de la Personnalité) was the first French association to be involved in autism, along with UNAPEI (Union Nationale des Associations de Parents et Amis de personnes handicapées mentales), a federation which advocated social actions for mental handicap. In 1963, ASITP set up the first day hospital for children, the Santos Dumont Hospital in Paris, the purpose of which was to prevent separating the children from their families. UNAPEI was founded in 1960. Like other associations, such as the French association of paralysed persons and the French association of haemophiliacs, UNAPEI was constituted in partnership with public authorities and the medical milieu. It participated actively in the drafting of the 1975 act on the handicapped persons’ rights (Patterson and Barral 2000, Winance 2004), along with UNAFAM, the national union of families and friends of persons with mental illness, founded in 1963 by families, and backed by psychiatrists. Unlike other associations specialising in autism, UNAPEI is concerned with all forms of mental handicaps. It works for the representations of mental handicap to evolve and for the handicapped people to be integrated as full citizens. However, UNAPEI is ambivalent, like the 1975 act, which states the obligation to integrate the handicapped people in society, and yet, organises specialised institutions for them (Winance 2004). The second generation of associations moved towards autism research and specialised institutions: In 1983, parents and professionals encouraged ASITP members to set up the Association for Research on Autism and Infantile Psychosis, also called ARAPI.2 The aim was to promote research on autism. ARAPI thus differs from ASITP insofar as it brings together parents and professionals and acts on the production of scientific knowledge, like the French association against myopathies (AFM) (Paterson and Barral 1994). Most of this type of association were set up in the 1980s in socio-economic partnership with public authorities, as well as research and medical institutes. In 1985, two associations affiliated to UNAPEI, AIDERA (Association Ile-de-France pour le Développement de l’Education et la Recherche sur l’autisme) and Pro Aid Autisme, decided to set up institutions oriented towards the Teacch programme. In 1985, AIDERA © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

Autism and social movements

83

inaugurated the day school, Notre Ecole, and Pro Aid Autisme created the Aria educational centres (the first of which opened in 1989) and has been actively involved in training professionals to use the Teacch approach. ASITP did not follow suit. In 1990, it became a federation called Sésame Autisme. Its action enabled autism to be distinguished from other disabilities. It now oversees 30 local associations and 50 institutions. Its staff of 1,000 provides care for 1,000 autistic individuals. Its main objective is to set up quality establishments for autistic persons. On its website,3 Sésame Autisme stresses that parents’ associations are responsible for the establishment and management of publicly funded institutions, ‘a long and difficult task for which parents are not prepared, and which they must accomplish in addition to their complex family settings and professional lives’. Sésame Autisme considers that ‘public policy makers offloaded what should have been their role upon the associations’. The third generation of associations adopts radical actions: Contextual arguments are put forward to account for the advent of a new generation of associations in the early 1990s, on the same model as the associations involved in fighting AIDS (Barbot 2006). These arguments usually emphasise the link between emerging radical actions and the direct expression of parents, and not professionals. The generalisation of behavioural methods in North America and the increasing number of publications in this field have encouraged parents to demand other practices. In 1989, after a split within ASITP, some 40 families set up Autisme France. The schism was due to different viewpoints: the dissident families denounced the classic conceptions of the French psychiatrists, refused the definition of autism as a psychosis and promoted behavioural interventions. They wished to follow the American model which, according to them, seemed to favour the children’s progress. They wanted to distance themselves from the concept of mental handicap and consequently from UNAPEI. In 1991, they obtained the support of the Fondation France Télécom, which made autism the focus of their patronage. Autisme France then became one of the most active parents’ associations and defined autism as a genetic disorder involving an atypical development of the nervous system, implying that autism is not caused by bad parenting. What kind of ideas and meanings are produced by these associations? The associations are engaged in ‘meaning work’ as defined by Snow and Benford (1992), i.e. as the struggle over the production of ideas and meanings (for constituents, antagonists, and bystanders or observers). This productive work may involve the transformation of old meanings and the generation of new meanings. This signifying work is conceptualised with the verb framing by Snow who refers to the products of framing activity as collective actions frames. The concept of frame refers to an interpretative schemata of the world. The new associations consider it unfair that the children should not benefit from behavioural methods which they regard as efficient. These methods were not known in France until the 1990s, when information was facilitated by the Internet. 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 problemsolving schema and refer to the North American model of autism. Interestingly, they have modified the boundaries between professional and lay expertise by referring to international classification and scientific publications, giving their demands more credibility. © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

84

Brigitte Chamak

Claims have evolved over time. The day hospitals regarded in the 1970s as progressive in not allowing children to be separated from their families, are now criticised by the new associations (Autisme France4 and Lea pour Samy5). They emphasise their lack of educational programmes and objectives, as well as the opacity of functioning. And yet, the waiting lists for day hospitals are growing longer, and other parents’ associations fight to keep these institutions, providing free care, open. Despite the ambition of Autisme France to represent all families, disadvantaged families remain underrepresented. Although its website provides very useful information, Autisme France does not take into account the parents who fight for the maintenance of day hospitals. The question of representativeness of the new and demanding associations remains to be addressed. The less well-off families are not represented, either within the associations or on the committees which advocate the need to transform practices. The better-off families seek to set up their own institutions, send their children to private schools or institutions practising the method of their choice, but such is not the case for families who have not the financial means. Whatever the associations, they are not the result of a democratic process but they provide tools for acting and modifying a situation considered detrimental. How have their actions influenced public policies? Under pressure applied by the French parents’ associations, three reports were published in 1994 and 19956 at the request of Simone Veil, then Minister for Social Affairs and Health. They led to the Veil Decree (No. 9512) of 27 April 1995 which proposed a five-year plan of action to improve the care of autistic individuals. The reports proposed changes in keeping with the demands of parents’ associations and the American model, including the development of an early diagnosis, the evaluation of a more rigorous treatment and the modification of intervention programmes by adopting a more educational and behavioural approach involving the parents’ collaboration. The reports also brought about political decisions to withdraw funding for long-term treatment in day hospitals, preferring shortterm evaluation and orientation towards healthcare and social-welfare facilities (special schools, institutions run by associations, home-care and part-time caretakers) or school integration. In a context of a decreasing supply of hospital beds, the public authorities have favoured ambulatory interventions and the involvement of the families, now considered as active partners, to avoid hospitalisation (Carpentier 2001). From the confrontation of three protagonists – parents’ associations, public policy makers and health professionals – an agreement emerged between the parents’ associations and policy makers to transform the care-providing methods, but the professionals’ resistance has remained important. As the transformation mainly involved private institutions, this allowed the government to withdraw from the fray while satisfying the associations. Today, public financing is more readily granted to home care and institutions run by private associations.7 Resulting from a strong demand by parents’ associations, autism was officially recognised as a handicap by the so-called Chossy act of 11 December 1996. Changing the status of autism from a psychiatric disease to a handicap enabled the parents to take some distance from psychiatry and has allowed both parents and autistic individuals to be granted rights and to receive allowances provided by the 1975 act (and now by the 2005 act). From then on, parents could choose, whenever possible, the care-providing modalities for their children. Associations have increased their impact through websites, colloquia, reports, newsletters, contact with the media and judicial recourse. In November 2003, the European Committee on Social Rights backed the associations by concluding that France had failed to respect its educational duties concerning autistic children and had violated three articles of the © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

Autism and social movements

85

Social European Charter. The Committee justified its decision by giving the following reasons: a restrictive definition of autism compared to the international classification, the non-enrolment of autistic children in school and the chronic shortage of facilities for adults. This decision satisfied a collective request of Autism Europe, to which the French associations are affiliated. In the mid-1990s, the transformations in the field of autism initiated by parents’ associations and some professionals involved in behavioural methods were characterised by changes, already generalised in North America. New elements emerged, such as adopting educational and behavioural approaches, training parents to become therapists, setting up a network between public and private facilities, reducing the influence of psychoanalysis, fostering the impact of associations, and redefining autism as a handicap and a genetic disease. All these changes, already well spread in different countries, were in opposition to the conceptions and practices of most French psychiatrists.8 Who has won and who has lost? In spite of the success of the French parents’ associations to gain power, they did not succeed in convincing the professionals to use behavioural methods. Promoters of behavioural methods appreciated the actions taken by parents’ associations, their best marketing agents. Indeed, they have contributed to the expansion of an autism-related market, which includes training for parents and professionals, exactly like the patients’ associations that foster the marketing of new drugs (Dalgalarrondo 2004, Healy 2004). Moreover, the parents’ associations extended their influence to research institutes such as The National Institute for Health and Medical Research (INSERM) in favour of greater associative involvement in medical research (Barbot 2006). In 2004, INSERM provided a collective experts’ report on the evaluation of psychotherapies concluding with the superiority of the behavioural methods that was to trigger a violent controversy extensively covered by the media. Even though the parents’ mobilisation won media support and succeeded in convincing some political authorities, the influence of the psychoanalytical orientation remains powerful in France and benefits from political support. Today, it is difficult to say who has won since most French professionals are still using a psychodynamic approach. The parents’ mobilisation, however, succeeded in discrediting psychiatrists with the public. Since the 1990s, the new associations have struggled against the domination of psychiatrists and have been politically active and virulent. Psychiatrists were seen as enjoying a position of hegemony in the total absence of any counter-power. They were viewed as endowed with the authority of an organised and powerful medical profession, whereas parents were at their mercy. Breaking away from the domination-based model, the new associations sought to constitute themselves as active communities to redress the balance of power. This mobilisation was extensively covered by the media. The parents’ associations looked for information on possible treatment on the Internet and some parents even became professionals. They denounced the politicians’ inertia and the doctors’ lack of updated knowledge. They tried to win some politicians over to their cause, and particularly a Member of Parliament, Jean-François Chossy, to modify the prevailing rules through law changes. Alliances with some politicians enabled associations to exercise control over the procedures for laying down the rules. The third generation of associations has been influenced by consumer pressure groups and has focused on treatments rejecting anything redolent of psychotherapy. Despite many actions (demonstrations, petitions, political lobbying, media mobilisation, etc.) and more than 10 years after the Veil Decree, associations have not succeeded in modifying autism interventions on a large scale because of the opposition of psychiatrists. © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

86

Brigitte Chamak

France has no federation liaising across all the parents’ associations because no consensus among the associations has been reached so far. The UNAPEI federation is concerned with all forms of mental handicap but the new associations consider that autism is not a mental handicap. The term ‘handicap’ is used to benefit from the law on the handicapped persons’ rights but the term ‘mental’ is rejected. The activism of Autisme France and its actions at the European level9 have made it highly visible. But Sésame Autisme Union, which has set up and managed many institutions, has taken a much more moderate position. Thanks to its contribution to several colloquia, its directors have changed the professionals’ attitude to a better understanding of the families’ needs. Thus, all parents’ associations do not make the same choices. The most recent ones voice the strongest demands. The parents’ associations do not always adopt satisfying positions for those directly concerned: individuals with autism. Since the 1990s, at the international level, new associations have been set up by autistic people. They no longer want to be considered as patients but as individuals with a different cognitive mode of functioning. As Barbot (2002) showed in her study on associations involved in fighting AIDS, different ‘patient’ models exist. The new emerging movement is orientated towards a legitimisation of the speech of autistic persons as active and demanding rather than passive and submissive. Their personal accounts are intended to capitalise on their experience by elaborating an authentic understanding of autism. While the parents’ associations act as mediators between autistic individuals and society, these new associations rely on direct engagement.

Role of autistic individuals’ organisations Although they have received little media coverage, the associations of autistic individuals are expanding, notably via the Internet. The association Autism Network International (ANI) is considered as the first autistic community, and remains the largest organisation run by autistic individuals to set up meetings on a regular basis (Sinclair 2005). ANI does not aim to find the cause of autism, treat the autistic person or render her/him ‘normal’ but rather to organise conferences (at the University of Syracuse) to stimulate autism selfadvocacy, to increase public visibility of their actions, to promote a new awareness and reduce stigmatisation. The objective is also to identify and ‘educate’ potential allies within the non-autistic population.10 On Jim Sinclair’s initiative, ANI was set up by a few verbal autistic people who had established contact via a penpal list provided by a parents’ organisation and had already met at conferences on autism. As the conferences were not appreciated by autistic persons (too crowded and noisy), they decided to create their own organisation. The first issue of their newsletter, ‘Our Voice’, was released in November 1992 and was to become the vehicle for information-sharing among the group as a whole, while the penpal list allowed people to have one-to-one contact. The autistic persons’ autobiographies published since the late 1980s, particularly those of Grandin (1986) and Williams (1992), have contributed to the growth of an identity politics around autism (Chamak 2005b) by allowing other people to recognise themselves in the descriptions of autism. Initially, in the late 1980s, Jim Sinclair had sought to communicate with other autistic people. His purpose in seeking to form a mutual self-help group for autistic people was ‘to share first-hand experiences to counter the uniformly gloomy and pessimistic (and often offensive and insulting) portrayals of autism in the existing literature; and to advocate for improved support services for autistic people’ (Sinclair 2005). In the early years of the association, two main avenues enabled new autistic members to make contact: online, © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

Autism and social movements

87

through the parent-orientated autism e-forum, and at conferences. Forum participation by autistic persons mainly consisted in posting descriptions about their lives and answering the parents’ questions. With the increasing participation of autistic people, more and more forum messages consisted of peer communication. Private e-mail correspondence also developed among autistic persons who had initially made contact on the forum. A few of them established personal relationships and eventually wished to meet their online friends in person (Sinclair 2005). In 1991, Jim Sinclair and other autistic persons participated in the Autism Society of America (ASA) national conference. The obvious interest many parents had in meeting them drew the attention of the ASA Board of Directors, which proposed that they should form a committee that would be advisory to the Board and would have some input into ASA and its future conferences. Yet, in spite of their promises, no help came from the Directors. When, contrary to expectations, autistic persons did begin to organise and announced the establishment of ANI, rumours initiated by some ASA Board members implied that Sinclair was not really autistic so as to undermine the credibility of ANI, perceived as a threat. In 1993 and 1994, several critical events were to turn ANI from a network of personal acquaintances into a community (a group of people having common interests and viewed as forming a distinct segment of society). The International Conference on Autism, a joint conference of the Autism Society of America and Autism Society of Canada, held in July 1993 in Toronto, sparked these events (Sinclair 2005). Sinclair’s presentation marked a turning point. His personal message, ‘Don’t mourn for us’, directly challenged ‘autism as tragedy’ (Sinclair 1993): Autism isn’t something a person has, or a ‘shell’ that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person – and if it were possible, the person you’d have left would not be the same person you started with. . . . Therefore, when parents say, ‘I wish my child did not have autism’, what they’re really saying is, ‘I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. The growing attention generated by his presentation drew more people to the ANI exhibit for information and registration. Another consequence of the 1993 conference was a dramatic increase in the amount of messages on the Internet autism forum. Some ‘neurotypic’ (NT) members began to post angry replies demanding that autistic people stop sending messages that were irrelevant to them. In the fall of 1994, ANI launched its own forum by using a listserv on an academic server. In 1996, the Autism Network International listserv (ANI-L) moved to its current home on the Syracuse University server.11 In 1995, an organisation for parents of ‘high-functioning’ autistic persons held its first conference. Jim Sinclair was contacted by the president of the organisation who asked him to arrange a separate series of conference sessions for autistic people. Sinclair turned that proposal into an ANI project and devoted much time to planning sessions. When planning the conference, however, the organisers consistently excluded ANI and after the conference, the organisers barely acknowledged ANI’s contributions. The autistic persons who had been heavily involved in planning sessions for the conference complained about the disrespectful and paternalistic ways they had been treated (Sinclair 2005). ANI members decided to assume autonomy to escape the pressures and the control of the parents’ associations. © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

88

Brigitte Chamak

For them, the time had come to organise their own conference. The concept of an autistic retreat (Autreat) began to take shape. In August 1996, the first Autreat took place in a children’s summer camp located in a rural area. About 50 people attended it: autistic adults, autistic children with their families, parents and one or two professionals. They met at that same camp every year, except in 2001, and in 2004 they moved to a university campus. While most Autreat attendees live in the United States or Canada, people also come from Australia, Finland, Israel, Japan, New Zealand, Norway, and other countries. Although a significant number does not use speech, most of them are verbal. The first year, most presentations were made by non-autistic people. At subsequent Autreats, 50 per cent or more of the speakers turned out to be autistic people. Sinclair (2005) explained: We are interested in workshops about positive ways of living with autism, about functioning as autistic people in a neurotypical world, and about the disability movement and its significance for autistic people. We are not interested in workshops about how to cure, prevent, or overcome autism (2005: 24). The possessive pronoun ‘our’ is used to create the impression that they have become a group, and they no longer need anyone to ‘represent’ them. Crossley and Crossley (2001) described the same phenomenon in their analysis of anthologies written by people living with mental ‘illness’ in the 1990s. They also pointed out the challenge to professional voices of authority which have historically enjoyed a monopoly within the field of mental health and the replacement of shame with pride. Some autistic persons had the feeling of homecoming at Autreat. That feeling, common to regular Autreat attendees, was addressed in an Autreat workshop comparing the autism community to a Diaspora (Schwarz 1999). Sinclair (2005) noticed: Sometimes as autistic people begin to understand autism as their natural way of being, they become angry about the things that have been done to them by people trying to make them ‘normal’. . . . In rejecting intolerant NT prejudices that define NT characteristics as ‘good’ and autistic characteristics as ‘bad’, some autistic people react with anti-NT prejudice and start defining all autistic characteristics and autistic people as ‘good’, and all NT characteristics and people as ‘bad’ (2005: 26). Over the last 13 years, ANI has grown from a small group to an international community. Its members share certain values in stating that their way of being has to be respected. They have many common experiences, both with autism itself, and with being autistic in a world of ‘neurotypicals’. They use certain terms, expressions, and in-jokes that are specific to their community. Not only does ANI endorse the role of representing autistic persons, it also structures different social spaces, such as a space for collective learning, that allow autistic individuals to be considered as fully-fledged human beings and citizens. Hence, ANI constitutes an organisation that fosters new ways of thinking and formulates a project in terms of construction and defence of a collective identity redefining autism as a different way of thinking and not as a disease. As an autistic individual, the Canadian Michelle Dawson considers that the parents’ associations have deprived them of their right to speak. She makes a political issue of autism and demands that autistic persons should be restored to their full dignity. Refusing the status of patient, she disapproves of the generalisation of behavioural therapies. On her website,12 she signs many articles denouncing the ‘misbehaviour of behaviourists’. She criticises parents’ associations and public policymakers who consider autism as a ‘disaster’, © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

Autism and social movements

89

thereby giving a very negative image of the autistic person. She clearly positions herself against the appeals of parents’ associations for the recognition of early intensive behavioural intervention as a necessary medical treatment. Michelle Dawson’s actions, supported by ANI, can be set in the broader context of the disability movement (Albrecht et al. 2001). It is reminiscent of the 1970s protest, questioning the social policies conceived ‘for’ handicapped people and not ‘by’ them (Turpin 1990). The vitality and impressive results of self-help groups, along with black people, feminists, gay and minority movements, have been taken up as models by the disability movement. In the same way, Dawson, who considers that ‘autism is not a disease any more than homosexuality’ refers to the history of feminist, homosexual, and ethnic actions. She mentions the fact that for a long time homosexuality was unfairly considered as a psychiatric disease. She refuses the ‘patient’ label and draws attention to the structural causes of the stigmatisation. From a disabilityrights structural analysis, people with autism are considered to be disabled by society because their differences, and particularly their perception particularities (hyper- or hyposensitivity), are not taken into account to understand their functioning modes but, instead, are interpreted as manifestations of madness or idiocy. The medicalisation of autism, like the medicalisation of disability, gives the impression that there is only one possible way of constructing disability, based on a medical and deficit model. Like Linton (1995) who emphasised how society embraces a narrow, devaluing construction of disability, Dawson shows how this limited view permeates our language and thus serves to perpetuate both marginalisation and discrimination of persons with autism. Compared to the first personal accounts of autistic people (Chamak 2005b), there is a shift from privatised and particularised testimonies about specific experiences of autism towards a sense of collective identity and a generalised critique of society. The stigma are totally subverted, thus turning a negative connotation of autism into a source of pride. Although Dawson’s actions are highly exacting, such is not the case for the majority of autistic individuals. The ANI supports such action, whereas the French-speaking association, Satedi, set up in 2002, prefers focusing on information, awareness and the organisation of a French-speaking community. Satedi proposes to assist individuals affected with pervasive developmental disorders and their families, to demystify autism, to play an educational role, to organise meetings among autistic individuals, to take a stand on political questions concerning autism and to influence the direction of research.13 This last point is not mentioned by ANI. So far, no contact between ANI and Satedi has been established. 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. Like other self-help groups, the associations of autistic persons aim to share experiences among individuals facing the same problem, as well as to affirm their identity and their competences in confronting their expertise to that of professionals. To the objectives of providing mutual assistance and support, they add the political objective of defending the rights of autistic persons. While the parents’ associations present autism as a tragedy, the autistic individuals’ associations cannot tolerate such dramatisation. In Canada, the clash between the positions of parents’ associations and autistic persons has been clearly expressed by Michelle Dawson. Autistic persons provide an alternative to the medical and the parents’ viewpoints. In France, the partnership between Satedi and some parents’ associations is linked to the fact that this association is newly born and some members are influenced by parents and © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

90

Brigitte Chamak

professionals in favour of educational and behavioural methods. Both express strong hostility to psychoanalysis.

Conclusion Why does the new American definition of autism invoke greater success than the French one? The enlargement of the diagnostic criteria along with the development of the educational and behavioural methods proposed by the American model of autism have allowed parents with autistic children to find an alternative to the former model, which stigmatised the parents, fostering their guilt feelings, and the autistic persons, considered as severely affected psychotics. On the one hand, in supplying parents with tools to educate their children, the new model responds to parents’ expectations. On the other hand, by including persons who can speak in the autism category, this model gives those unable to speak the opportunity to be represented by persons who have experienced similar perception particularities and social interaction difficulties, leading to the emergence of a new social movement. Analysing the historical dynamics of the mobilisation of the French parents’ associations and the engagement of autistic persons’ organisations within the analytical frame of the new social movements has enabled us to highlight the productive work of associations in the transformation of old meanings and the generation of new meanings and in propagating the latter through the media. The French parents’ associations are the channel through which the American model is diffused, whereas the international autistic persons’ organisations have made a political issue of autism by redefining it as a way of being. Having access to medical and scientific information, parents and autistic persons acquire an expertise capacity to modify their relationship with the medical world and hence question the prevailing dissymmetric model. Access to information remains a political stake for associations, parents and autistic persons. For professionals, the Internet might induce confusion and cause deterioration in the confidence between parents, patients and doctors (Kassirer 2000), whereas for parents and autistic persons, the Internet has allowed them to emancipate themselves from doctors’ domination. Thanks to different sources of information, they can explore the contents of medical papers, communicate with peers, exchange experiences and constitute a collective lay expertise (Jadad 1999). Regarding autism, the role of the Internet is dual: it facilitates access to information but fuels confusion, especially concerning the aetiologies and the therapies of autism. It has now become difficult to distinguish between actual information and advertising. However, instead of isolating people (Kraut et al. 1998), the Internet has favoured fruitful exchanges, usually so difficult to establish for autistic persons, and has helped them to constitute a social network. Forums and penpal lists have allowed autistic persons to communicate and to form associations. In the late 1980s, with the classification changes and the first autobiographies (Grandin 1986), we observed the arrival into the social sphere of autistic persons who wished to become citizens in their own right. Embedding their experiences within a wider social grouping has led them to manifest a strong sense of collective identity, which contributes to the discourse of political resistance and activism evident within the contemporary field of mental health (Crossley and Crossley 2001). If disability movements are considered by researchers on disability studies as the latest generation of social movements (Driedger 1989, Albrecht et al. 2001), the action of autistic persons can be viewed as the latest generation of the disability movement. The differences between ANI and Satedi, the new French-speaking association, highlight the key role of contextual and cultural environment. By analysing autobiographies written by persons with autism or Asperger syndrome, I have © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

Autism and social movements

91

already stressed the function of cultural signifiers in constructing one’s representation of autism (Chamak 2005b). Like any other association, the autistic persons’ organisations are not representative of the whole range of experiences but play an active role in modifying the representations of autism. Considered as a negative labelling in the 1970s, autism has become a source of pride for their members. It is easier to identify themselves with persons like Temple Grandin, a professor of zoology who contributed to the improvement of US slaughter-houses, than with a child with no speaking capacities. Moreover, the idea circulating on the Internet that Einstein, Glenn Gould and other famous geniuses had Asperger syndrome, fuels the feeling of pride. Judy Singer (1999), a sociologist with a Disability Studies background, explained how she realised that her mother had a developmental disability and ‘not a moral disorder’ when her child was diagnosed with a PDD. It took her 40 years to find the words to describe her mother. In such a context, the concept of labelling has evolved from a stigma to a liberation. Even without a diagnosis, people with behavioural differences are stigmatised but they do not know why they are different. They are afraid of being mad. Acceptance of their autistic features allows them to find appropriate information and to contact other people with PDD. In France, at least three crucial factors account for the very negative connotation linked to autism: first, for most psychiatrists autism remains a severe psychosis; secondly, parents insist on the fact that autism is a handicap to get financial assistance; and thirdly, Satedi, the French-speaking autistic persons’ organisation, recently set up, has not established any contact with ANI, has not adopted radical positions and its impact remains limited. Several studies have shown that patients’ associations have joined established actors in the production of medical and scientific knowledge (Epstein 1995, Barbot 1998, Dalgalarrondo 2004, Rabeharisoa 2006) but such is not the case of ANI. No involvement in research has been ascribed to this organisation whose objective consists in redefining autism as another way of thinking and no longer as a disease. However, Satedi is interested in research and has tried to contact professionals who embody their conception of ‘good’ interventions. It organises training sessions with professionals from Quebec to initiate parents and French professionals in sensory integration. Satedi is less exacting than ANI and less orientated towards a political consciousness. While Sinclair in the United States and Dawson in Canada have tried to raise political awareness, in France, Satedi is reluctant to use the term ‘autism’ and prefers ‘TED’ (Trouble Envahissant du Développement).14 Parents’ and autistic persons’ associations have modified the landscape but in different ways depending on the country. The conflict between parents’ associations and autistic persons is tougher in the United States and Canada, which have different traditions of protest and social reform from those in France (Shakespeare 1993). In North America and in the United Kingdom, direct action lies at the core of the disabled people’s movement. In Ethel Klein’s (1984) study on the women’s movement, the three-stage process of political consciousness described can be similarly observed in the autistic persons’ movement. 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. These three stages are obvious for the movement in North America, the United Kingdom, Australia and Sweden but they are not so clear in France. Given its recent creation, Satedi still remains under the influence of parents’ associations. This study has allowed us to identify various forms of social constructions of autism. Two different medical and scientific constructions have been distinguished: on the one © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

92

Brigitte Chamak

hand, a classical view of autism as a severe disease and, on the other hand, as another mode of cognitive functioning. Regarding the associations, three different constructions were observed: (1) the parents’ associations created before the 1990s work in partnership with the public authorities and medical institutions; (2) the parents’ associations formed after the 1990s have redefined autism, according to the American model, as a problem of educational and behavioural treatment with no need for psychiatrists; (3) the autistic persons’ associations propose a new vision of autism, taken up by some cognitive-science researchers who are interested in persons with high-functioning autism and Asperger syndrome (Baron-Cohen,15 Happé 1999, Mottron 2004). For them, autism ceases to be a disease or a disability to become another style of thinking and living. Although more radical, this position is reminiscent of the orientation adopted by the International Classification of Functioning, Disability and Health (ICF) published in 2001 (WHO, Geneva): disablement is now understood as an identifiable variation of human functioning (Bickenbach et al. 1999). Each dimension of disablement is conceptualised as an interaction between the individual’s intrinsic features and his or her social and physical environment. Disablement as grasped by ICF is an intrinsic feature of the human condition, not a difference that essentially marks one sub-population off from another. Thus ICF became a classification of human functioning, not merely of aspects of disablement. Simi Linton (1995) also advocates a new field of Disability Studies that presents the subject of disability as human variation. Turning stigmatisation into a difference is a classic strategy in a society where normality is characterised by the pluralism of values and styles of living (Ehrenberg 1995). The current claim for difference illustrates the contemporary egalitarian yearning (Ehrenberg 2004). The changes in the normal-pathology relation are currently penetrating our societies in which various phenomena are often transformed into psychiatric problems, whereas autism, lying at the core of psychiatry, tends to leave the field of psychiatry under the pressure of associations. These transformations have to be analysed in the broader social context of ‘generalised autonomy’ with everyone’s expectation to decide and act on his or her own in any social situation (Ehrenberg 2004). Address for correspondence: Brigitte Chamak, CESAMES (Centre de Recherche Psychotropes, Santé Mentale, Société), Université Paris Descartes, 45 rue des Saints-Pères, 75270 Paris cedex 0, France e-mail: [email protected]

Acknowledgements This work is part of a broader research project on the transformations of autism representations financed by Fondation de France and INSERM. We wish to thank Alain Ehrenberg for his encouragement, David Cohen for his collaboration, Christine Calderon for her transcriptions of interviews, Béatrice Bonniau for her help, as well as Martine Chauffeté and Béatrice Berna, English teachers at the Centre Technique des Langues (Université Paris Descartes), for their corrections. Finally, I wish to thank the anonymous referees for their enlightening comments.

Notes 1

In the International Classification of Impairments, Disabilities and Handicaps (World Health Organisation, Geneva, 1980), impairments referred to abnormality in the structure of the

© 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

Autism and social movements

2 3 4 5 6

7 8 9 10 11 12 13 14 15

93

functioning of the body; disability referred to the restriction in ability to perform tasks, especially those associated with everyday life and self-care activities, and handicap referred to the social disadvantage that could be associated with either impairment and/or disability. The parents’ associations have insisted on the third aspect. In France, the term ‘handicap’ is almost the only one used and the adjectives physical, mental, social are added to specify the nature of the handicap, but the French equivalent to the terms ‘impairment’ and ‘disability’ do not really exist (Winance 2004). When I refer to the French case, I use the term ‘handicap’ in the French sense, i.e. including impairments, disabilities and handicap. ARAPI became in 1995 the Association for Research on Autism and the Prevention of Inadaptabilities (autism was no longer considered as a psychosis). http://sesaut.free.fr See the website http://autisme.france.free.fr. The list of day hospitals has not been included in their website deliberately. See the website http://www.leapoursamy.com. Lea pour Samy was formed in 2001. Rapport de l’Inspection Générale des Affaires Sociales, La prise en charge des enfants et adolescents autistes, October 1994; Rapport de l’Agence Nationale pour le Développement de l’Evaluation Médicale, L’autisme, November 1995; Rapport de la Direction de l’Action Sociale, Propositions sur l’accueil des adultes autistes, January 1995. Report to Parliament written by Jean-François Bauduret, L’autisme: évaluation des actions conduites (1995–2000), December 2000. According to interviews of professionals and the numerous papers and books published by the French psychiatrists. Autisme France is closely connected with Autism Europe. See the ANI website: http://ani.autistics.org. Syracuse University is known for stimulating the development of disability studies (Albrecht et al. 2001). http://www.sentex.net/~nexus23/naa_02.html See the Satedi website: www.satedi.org and the subscription form. TED corresponds to PDD (Pervasive Developmental Disorder). Baron-Cohen, S’ article, ‘Is Asperger’s syndrome/high-functioning autism necessarily a disability?’ is on the website www.geocities.com

References Albrecht, G., Ravaud, J-F. and Stiker, H-J. (2001) L’émergence des disabilities studies: état des lieux et perspectives, Sciences sociales et Santé, 19, 43–76. Appleton, W.S. (1974) Mistreatment of patients’ families by psychiatrists, American Journal of Psychiatry, 131, 655 – 7. Asperger, H. (1944) Die autistischen Psychopathen im Kindesalter, Archiv. für Psychiatry und Nervenkrankeiten, 117, 76–136. Atwood, T. (1998) Asperger’s syndrome. London: Jessica Kingsley. Barbot, J. (2002) Les malades en mouvements. Paris: Balland. Barbot, J. (2006) How to build an « active » patient? The work of AIDS associations in France, Social Science and Medicine, 62, 538–51. Barral, C., Paterson, F., Stiker, H.-J. and Chauvière, M. (eds) (2000) L’Institution du handicap: le rôle des associations XIXe–XXe siècles. Presses Universitaires de Rennes. Barthélémy, M. (2000a) Associations: un nouvel âge de la participation? Paris: Presses de Sciences Politiques. Barthélémy, M. (2000b) Les associations et la démocratie: la singularité française. In editor(s) Qu’est-ce que la société? Université de tous les savoirs, volume 3. Paris: Odile Jacob. Best, J. (2001) How Claims Spread: Cross-national Diffusion of Social Problems. New York: Aldine de Gruyter. © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

94

Brigitte Chamak

Bettelheim, B. (1967) The Empty Fortress: Infantile Autism and the Birth of Self. New York: Free Press. Bickenbach, J.E., Chatterji, S., Badley, E.M. and Ürstün, T.B. (1999) Models of disablement, universalism and the international classification of impairments, disabilities and handicaps, Social Science and Medicine, 48, 1173 – 87. Boltanski, L. and Thévenot, L. (1991) De la Justification. Les économies de la grandeur. Paris: Gallimard. Broqua, C. and Jauffret-Roustide, M. (2004) Les collectifs d’usagers dans les champs du sida et de la toxicomanie, Médecine/Sciences, 20, 474 – 9. Carpentier, N. (2001) Le long voyage des familles: la relation entre la psychiatrie et la famille au cours du XXe siècle, Sciences Sociales et Santé, 19, 1, 79 –104. Chakrabarti, S. and Fombonne, E. (2001) Pervasive developmental disorders in preschool children. JAMA, 285, 3093–9. Chamak, B. (2005a) Les transformations des représentations de l’autisme et de sa prise en charge: le rôle des associations en France, in Nouveau malaise dans la civilisation: regards sociologiques sur la santé mentale, la souffrance psychique et la psychologisation, Cahiers de Recherche Sociologique (Université du Québec à Montréal) 41, 171–92. Chamak, B. (2005b) Les récits de personnes autistes: une analyse socio-anthropologique, Handicap, Revue de Sciences Humaines et Sociales, 105–06, 33–50. Crossley, M. and Crossley, N. (2001) ‘Patient’ voices, social movements and the habitus; how psychiatric survivors ‘speak out’, Social Science and Medicine, 52, 1477–89. Dalgalarrondo, S. (2004) Sida: la course aux molécules. Paris: ed. de l’EHESS. Driedger, D. (1989) The Last Civil Rights Movement. London: Hurst and Co. Ehrenberg, A. (1991) Le Culte de la performance. Paris: Calmann-Lévy. Ehrenberg, A. (1995) L’Individu incertain. Paris: Calmann-Lévy. Ehrenberg, A. (1998) La Fatigue d’être soi. Paris: Odile Jacob. Ehrenberg, A. (2004) Les changements de la relation normal-pathologique. A propos de la souffrance psychique et de la santé mentale, Esprit, 5, 133–56. Epstein, S. (1995) The construction of lay expertise: Aids activism and the forging of credibility on the reform of clinical trials, Science Technology and Human Values, 20, 408–37. Fombonne, E. (2003) Epidemiological surveys of autism and other pervasive developmental disorders: an update. Journal of and Autism Developmental Disorders, 33, 4, 365–82. Frith, U. (1991) Autism and Asperger Syndrome. Cambridge: Cambridge University Press. Goffman, E. (1974) Frame Analysis. Cambridge: Harvard University Press. Grandin, T. (1986) Emergence-Labeled Autistic. Arena Press. Hacking, I. (2006) What is Tom saying to Maureen ? London Review of Books, 11 May, 2006. Happé, F. (1999) Autism: cognitive deficit or cognitive style? Trends in Cognitive Sciences, 3, 6, 216–22. Healy, D. (2004) Shaping the intimates: influences on the experience of everyday nerves, Social Studies of Science, 34, 219– 45. Hochmann, J. (2006) Soigner, éduquer, instituer, raconter. Histoire et actualités des traitements institutionnels des enfants psychiquement troublés, Revue Française de Psychanalyse, 70, 4, 1043– 64. Jadad, A.R. (1999) Promoting partnerships: challenges for the internet age, British Medical Journal, 319, 761– 4. Jauffret, M. (2000) L’Auto-support des usagers de drogues en France: Groupes d’entraide et groupes d’intérêt. Paris: CESAMES document no. 6. Kanner, L. (1943) Autistic disturbances of affective contact, Nervous Child, 2, 217–50. Kassirer, J. (2000) Patients, physicians, and the Internet, Health Affairs, 19, 115–23. Katz, A.H. and Bender, E.L. (1976) Self-help groups in Western society: history and prospects, Journal of Applied Behavioural Sciences, 12, 265 – 82. Klawiter, M. (1999) Racing for cure, walking women, and toxic touring. Mapping cultures of actions within the Bay Area terrain of breast cancer: programs and organizational processes, Social Problems, 46, 104 –26. © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

Autism and social movements

95

Klein, E. (1984) Gender Politics, Cambridge: Harvard University Press. Kraut, R., Patterson, M., Lundmark, V., Kiesler, S., Mukhopadhyay, T. and Scherlis, W. (1998) Internet paradox: a social technology that reduces social involvement and psychological wellbeing? American Psychologist, 53, 9, 1017 – 31. Lovaas, O.I. (1987) Behavioral treatment and normal education and intellectual functioning in young autistic children, Journal of Consulting and Clinical Psychology, 55, 3–9. Linton, S. (1995) Claiming Disability: Knowledge and Identity. New York: New York University Press. Molloy, H. and Vasil, L. (2002) The social construction of Asperger Syndrome: the pathologising of difference? Disability and Society, 17, 6, 659 – 69. Mottron, L. (2004) L’Autisme: une autre intelligence. Diagnostic, cognition et support des personnes autistes sans déficience intellectuelle. Belgique: Mardaga. Mueller, C. (1994) Conflict networks and the origins of women’s liberation. In Johnston, H., Larana, E. and Gusfield, J.R. (eds) New Social Movements from Ideology to Identity. Philadelphie: Temple University Press. Paterson, F. and Barral, C. (1994) L’Association Française contre les Myopathies: trajectoire d’une association d’usagers et construction associative d’une maladie, Sciences sociales et Santé, XII, 79– 111. Pinell, P. (1987) Fléau moderne et médecine d’avenir: la cancérologie française entre les deux guerre. Actes de la Recherche en sciences sociales, 68, 45 – 76. Pinell, P., Broqua, C., de Busscher, P.O., Jauffret, M. and Thiandière, C. (2000) Une Epidémie politique: la lutte contre le sida en France (1981–1996). Paris: PUF. Rabeharisoa, V. (2006) From representation to mediation: the shaping of collective mobilization on muscular dystrophy in France, Social Science and Medicine, 62, 564–76. Rabeharisoa, V. and Callon, M. (2000) Les associations de malades et la recherche, I. Des self-help groups aux associations de malades, Médecine/Sciences, 16, 945–9; II. Les formes d’engagement des associations de malades dans la recherche en France, Médecine/Sciences, 17, 1225–31. Rapin, I. (2002) The autistic-spectrum disorders. New England Journal of Medicine, 347, 302–03. Room, R. (1998) Mutual help movements for alcohol problems in an international perspective, Addiction Research, 6, 131– 45. Schopler, E., Mesibov, G.B., Shigley, H. and Bashford, A. (1984) Helping autistic children through their parents: the TÉACCH model. In Schopler, E. and Mesibov, G.B. (eds) The effects of autism on the family. New York: Plenum. Schreibman, L. (2005) The Science and Fiction of Autism. Cambridge, MA: Harvard University Press. Shakespeare, T. (1993) Disabled people’s self-organization: a new social movement? Disability, Handicap and Society, 8, 249 – 64. Sinclair, J. (1993) Don’t mourn for us, Our Voice, the newsletter of Autism Network International, 1, 3. Go to the website here-www.jimsinclair.org/dontmourn.htm. Sinclair, J. (2005) Autism network international: the development of a community and its culture. Go to the website here–http://web.syr.edu/~jisincla/History_of_ANI.html Singer J. (1999) Why can’t you be normal for once in your life? From a ‘Problem with no Name’ to a new category of disability. In Corker, M. and French, S. (eds) Disability Discourse, Mittan Keyres: Open University Press. Snow, D. and Benford R. (1992) Master frames and cycles protest. In Morries, A. and McClurg C. (ed.) Frontiers in Social Movement Theory. London: Yale University Press. Snow, D., Rochford, B., Worden, S. and Benford, R. (1986) Frame alignment processes, micromobilization, and movement participation, American Sociological Review, 51, 464–81. Snow, D., Soule, S. and Kriesi, H. (2004) Mapping the Terrain. In Snow, D., Soule, S. and Kriesi, H. (eds), The Blackwell Companion to Social Movements. Oxford: Blackwell. Sutton, N. (1996) Bruno Bettelheim: une vie. Paris: Hachette. Schwarz, P. (1999) The autism community as a neurological diaspora: Some cultural parallels and some practical responses. Presentation at Autreat, Canandaigua, New York. Théry, H. (1986) La place et le rôle du secteur associatif dans le développement de la politique d’action sanitaire et sociale, avis et rapport du Conseil économique et social. © 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

96

Brigitte Chamak

Turner, R. (1969) The theme of contemporary social movements, British Journal of Sociology, 20, 390 – 405. Turpin, P. (1990) La lutte contre l’assistance pendant les années soixante-dix, Cahiers du CTNERHI, 50, 83 – 92. Williams, D. (1992) Nobody Nowhere. New York: Times Books. Winance, M. (2004) Handicap et normalisation. Analyse des transformations du rapport à la norme dans les institutions et les interactions, Politix, 17, 66, 201–27. Wing, L. (1981) Asperger’s syndrome: a clinical account, Psychological Medicine, 11, 115–29.

© 2007 The Author Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd