Mitzi Waltz

Autism self-advocacy in the Netherlands: past, present and future

This article presents the results of participatory research into the roles and practices of autistic self-advocates in the Netherlands, and the outcomes of their activities. The article discusses the history of Dutch autism self-advocacy, situating it within the history and practices of self-advocacy internationally and the socio-cultural context of the Netherlands. Particular reference is made to Judi Chamberlin’s model for building effective self-advocacy organisations. Key findings include the scope of significant achievements, and the identification of barriers to efficacy in the areas of governance, personal and organisational capacity, relationships with other organisations, and coalition-building. The research concludes by considering what practices could serve to build increased capacity and efficacy, based on the experiences of these and other self-advocates.

Self-Advocacy vs. the Rise of the Medical Model

In 1990, Bruno Bettelheim committed suicide. Although he had not been an active practitioner in the autism field for many years, it seemed as though this event finally gave critics a chance to step out from his shadow. What followed was more than the reappraisal of a life’s work that usually follows the death of a prominent person: it was a public excoriation that included revelations that Bettelheim had falsified his personal and educational background, and published distorted and fabricated research (Pollak, 1997).

Autism before and after the Enlightenment

The stories of Ralph and Ida neatly bisect the social and medical history of autism. Before the ‘Age of Enlightenment,’ a period that is usually held to run from the last two decades of the seventeenth century through the eighteenth century, the symptoms that we now associate with autism were viewed largely through the lenses of folklore and religious belief. After it, there was almost always a medical aspect to how these symptoms were conceptualised and dealt with, even if this was but a thin veneer of terminology. This is not to say that there was a sea change from one paradigm to another. As will be demonstrated in later chapters, earlier beliefs about autism have survived alongside and within scientific views. Observers in the pre-Enlightenment past will also have occasionally stumbled upon less ethereal explanations.

A Nameless Difference

Ralph Sedgwick1 lay in the bed, where he was tucked tightly in beneath a crisp white sheet to keep him from wandering. He wiggled his fingers between his eyes and the light that came streaming in through the large window at the end of the hospital ward. The year was 1877, the height of the Victorian era and a time when medical knowledge was expanding rapidly.

Bedlam, Behaviourism, and Beyond

In the men’s ward at Ely Hospital in the mid-1960s, Jimmy Jones1 was just one of around 60 adults living on a packed ward, which was one of six in the large subnormality hospital outside Cardiff in Wales. He had lived at Ely from the age of four, having been admitted in 1935. In the ward’s sleeping room, beds with their matching white sheets and coverlets ranged in tight rows down both walls and twice again down the centre of the room. You could just about stand sideways between one bed and the next.

The Social Construction of Autism

For many years, practitioners working with children seen to have behavioural, psychological, or developmental problems had little guidance. Textbooks referred to children only in relation to the childhood experiences of adult patients, and child psychology and psychiatry did not exist as recognised specialties. The few clinicians who did see this population in private practice applied adult-based psychoanalytic theories or used the principles put forward by the Child Guidance movement to work primarily with the affected child’s parents, paediatricians, schools, and social agencies (although in cases where the child was seen as feeble-minded or severely disturbed, removal from the family remained a common remedy) (Jones, 2002). Even within residential schools and institutions, direct intervention with individual children was actually quite rare: the emphasis was on group-based work and on behaviour control, often through punitive and even abusive methods.

From ‘Pathological Motherhood’ to Refrigerator Mothers

For decades the ideas of Bruno Bettelheim (1903–1990) and others from a primarily Freudian psychotherapy background held sway in the field, with devastating results for affected children and their families. This chapter will explain the context within which such notions gained widespread acceptance, and set the stage for the character of the reaction to them that reverberates to this day.

Workhouses, Asylums, and the Rise of Behavioural Sciences

By the Victorian era, the population of England had swollen rapidly. Throughout most of the Western world, there was a massive migration from rural areas into cities like London, and even in the countryside industrialisation was changing the nature of everyday life through mechanised agriculture. For industrialists and the educated few, these extraordinary changes in social conditions brought new opportunities, but, paradoxically, the lives of many people with disabilities became more miserable. Although science promised cures and treatments for those with some medical conditions, the modern era placed increased demands on individuals with developmental differences, and removed some supports that traditional lifeways had offered.

Parent Blaming, Parent Power, and the Start of Real Research

As the 1970s moved forward, many adults like Jimmy Jones remained on locked wards, but far fewer children were being shunted into long-stay institutions. In any case, there had always been some families who resisted the advice to institutionalise. For example, the Edge family, from a small coastal village in England, struggled to keep their son Michael in the family during the 1960s. It was help from friends and relatives, and eventually support services started by the National Autistic Society (NAS), that made this possible (Stevens, 2011).