From Medication to Education

People with autism in adult psychiatry

DOCTORAL DISSERTATION, ISBN 91-628-5219-1
MAY 2002

Eve Mandre


Digital camera with a picture of an eagle in flight. Summary

This dissertation concerns the field of applied psychiatry and focuses on the problems that are associated with the care and treatment of adult patients with autism spectrum disorders. The conditions that are described are valid for Swedish psychiatry and cannot be directly generalized to conditions outside of the country. 

The purpose of this dissertation is to assist personnel in adult psychiatry in increasing their knowledge of the difficulties in contact, communication and cognition that are associated with a diagnosis of autism. By participating in an educational programme on the atypical psychological development of the patients, the knowledge can be used to establish individualized treatment based on a particular patient's problems.

Autism in adults was not perceived as a concern for adult psychiatry in Sweden until the latter part of the 1990s when Asperger Syndrome was described as a diagnostic category in the fourth edition of the DSM (Diagnostic and Statistical Manual of Mental Disorders, 1995). Attention was first drawn to the fact that these patients already existed under other diagnoses within adult psychiatry by some highly publicized cases. These cases resulted in a period of heated debate in the media among representatives of different approaches. After that, practitioners within psychiatry started in general to recognize expressions of autistic spectrum disorders and incorporate neuropsychiatric as well as educational expertise into practice. Now - in 2002 - autism spectrum disorders have been accepted, to a greater or lesser extent, as a valid diagnostic group in adult psychiatry and more and more adults have been given the autism diagnosis. However, individual treatment methods that particularly address the communication difficulties and atypical thinking patterns of these people do not yet exist to any great extent.

When people with autism spectrum disorders are treated within psychiatry, they encounter many assumptions that are taken for granted as to what they are supposed to know and understand about social situations and of how to communicate with people in their environment. In this dissertation, I theoretically explain how these individuals are different by applying theories of early childhood social learning to the difficulties adult patients have with contact, communication and cognition. Psychological development that lacks the social dimension can result in a person of otherwise normal intelligence having significant deficiencies in his or her communication skills and ways of understanding everyday situations.

The dissertation deals with many related fields, from the effects of atypical psychological development to the area of practical education. I engage myself in the learning process by directly working with patients in a few cases and indirectly through an educational programme for psychiatric personnel. Then I let theory, my own practical experience and reflections come into play in order to describe and analyse the process on different levels. I am the main narrator, but at times I turn the story over to members of the psychiatric staff who are interviewed or who in some other way express themselves. In other words, a narrative contextual analysis is used as a method for placing the reader in the context in which I carry out an educational programme for psychiatric personnel. In a longer case description, I demonstrate how a change in staff perspective results in increased comprehension of the behaviour of a long-term care patient in forensic psychiatry. He has not had the ability to interact with other people in such a way that he could acquire social signals and codes or acceptable means of communicating. Thus, as an adult, he has been perceived as being very odd and difficult to deal with in psychiatry. His special disability requires that rehabilitation efforts be based on treatment methods that provide opportunities for social learning.

When personnel in psychiatry are going to learn to deal with patients in this new diagnostic category, it requires a reorientation in thinking and understanding in order to apply new theoretical knowledge on autism in an entrenched, practical organization. For the theory to result in new treatment practices, the training has to be anchored in their everyday reality and be based on the problems of their own patients. One of the main sections of the dissertation deals with an educational programme for eight psychiatric units in different parts of Sweden in which the staff, by describing their patients, were provided with alternative explanations to the patients' behaviour and advice on how to deal with it. The personnel documented what they learned, the effects of which have been placed in relation to changes the learning has brought about in the patients.

The reorientation that has taken place among the personnel has, in most cases, resulted in significant changes for the patients. Several have been re-evaluated, resulting in new diagnoses. Some have been discharged from institutionalized psychiatric care to housing arranged by the local authorities - one after 25 years in forensic psychiatric care. In one case, it has also become apparent that the housing resources the municipalities offer according to the Act Concerning Support and Service for Persons with Certain Functional Impairments (LSS) are not able to provide for persons who have great difficulties in concentration, memory and executive functions. Another issue that stands out clearly in the individual staff training sessions as well as in interviews with the psychiatric personnel are the difficulties in caring for patients with autism on general units in which care is based on entirely different treatment principles.

A striking result when observing psychiatry from the perspective of design sciences has been that care settings in general lack expertise in the special environments needed so that the patients' cognitive difficulties, disturbances in perception and executive difficulties do not become handicapping. Nowhere has such knowledge been the basis for design of the environments in which patients live for years in many cases. In the light of the relative definition of a handicap, in which it is seen as an interaction between the person and his or her environment, I have been able to observe that psychiatric settings to a large extent can be seen as handicapping for large groups of patients.

Complete dissertation (pdf-format 610 kB)

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