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Published in: Medicine, Health Care and Philosophy 1/2020

Open Access 01-03-2020 | Scientific Contribution

Autism, autonomy, and authenticity

Authors: Elisabeth M. A. Späth, Karin R. Jongsma

Published in: Medicine, Health Care and Philosophy | Issue 1/2020

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Abstract

Autonomy of people on the autism-spectrum has only been very rarely conceptually explored. Autism spectrum is commonly considered a hetereogenous disorder, and typically described as a behaviorally-defined neurodevelopmental disorder associated with the presence of social-communication deficits and restricted and repetitive behaviors. Autism research mainly focuses on the behavior of autistic people and ways to teach them skills that are in line with social norms. Interventions such as therapies are being justified with the assumption that autists lack the capacity to be self-reflective and to be “author of their lives”. We question this assumption, as some empirical research shows that autists are aware of their strengths and are critical about social norms, we take this as a starting point to reconsider the beliefs about autistic people’s capacities. As a theoretical framework, we draw on Berlin’s idea of positive and negative liberty as he clearly distinguishes between one’s own developed preferences and the simple absence of interference. By drawing on the concept of positive liberty, we illustrate that a lot of autists are aware of their own needs, and usually do not deny their own needs, values and interests. This makes them less prone than non-autistic people to adapt their preferences to external influences, which might be seen as sticking to an authentic way of living. Our analysis shows that many autists are hindered to be(come) autonomous due to unjustified interference, unreflected assumptions about their self-determination, or by paternalistic actions. These observations contribute to a better understanding when help and interference are justified and a more differentiated understanding of autonomy of autistic people.
Footnotes
1
For the following, we will avoid referring to a specific category of that spectrum: on the one hand, discussions on the DSM-5 indicate (cf. Spillers et al. 2014) that it is highly debated how autism can be diagnosed and exactly defined and on the other hand, autonomy has not actually been analyzed in respect to autists. Yet, it represents a concept which should be generally considered and should not be denied a priori because of a (specific) diagnosis of autism.
 
2
Although medical decision-making for minors is complex and heavily debated, many legal and ethical guidelines regard autonomy of children as a growing capacity, therefore their consent, assent or objection has to be considered or respected in medical decision-making (Jongsma et al. 2015).
 
3
A typical example for adaptive preferences is the “oppressed housewife”; in the 1960s women may have stopped questioning their prevailing role as a housewife, which was reduced to household tasks, and subordinated herself to the given structures in which women did not have equal opportunities and the same rights as men. The important normatively relevant observation is that women continued to positively evaluate their role, because they would have otherwise been confronted with barriers and/or (financial) risks and societal rejection, but may have felt unhappy and experiences the situation as problematic. The crucial stage of adaptive preferences is thus when societal norms become internalized so that the person uncritically identifies with them.
 
4
There is evidence that disrespecting an autistic person’s wishes in (medical) decision-making, including guardianship and proxy consent, is also prevalent beyond adolescence (Graber 2017).
 
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Metadata
Title
Autism, autonomy, and authenticity
Authors
Elisabeth M. A. Späth
Karin R. Jongsma
Publication date
01-03-2020
Publisher
Springer Netherlands
Published in
Medicine, Health Care and Philosophy / Issue 1/2020
Print ISSN: 1386-7423
Electronic ISSN: 1572-8633
DOI
https://doi.org/10.1007/s11019-019-09909-3

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