A Life of One's Own: Challenges in the Transition from Childhood to Adulthood with Autism Spectrum Disorder

doi:10.1001/journalofethics.2015.17.4.pfor1-1504

Cited by 8 publications

(5 citation statements)

References 10 publications

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“…Because transition to adulthood is a particular challenge for adolescents with ASD and because skills necessary for young adult life must be practiced during the school-age years (Howlin & Moss, 2012;Parsi & Elster, 2015), the Delphi team offered some commentary on topics bridging into young adulthood (employment and romantic relationships). These areas are included so that clinicians may provide targeted psychoeducation and therapeutic supports aimed at helping the young person navigate these challenges in their transition to adulthood.…”

Section: Young Adulthoodmentioning

confidence: 99%

Initial Clinical Guidelines for Co-Occurring Autism Spectrum Disorder and Gender Dysphoria or Incongruence in Adolescents

Strang

Meagher

Kenworthy

et al. 2016

Journal of Clinical Child & Adolescent Psychology

170

128

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Evidence indicates an overrepresentation of youth with co-occurring autism spectrum disorders (ASD) and gender dysphoria (GD). The clinical assessment and treatment of adolescents with this co-occurrence is often complex, related to the developmental aspects of ASD. There are no guidelines for clinical care when ASD and GD co-occur; however, there are clinicians and researchers experienced in this co-occurrence. This study develops initial clinical consensus guidelines for the assessment and care of adolescents with co-occurring ASD and GD, from the best clinical practices of current experts in the field. Expert participants were identified through a comprehensive international search process and invited to participate in a two-stage Delphi procedure to form clinical consensus statements. The Delphi Method is a well-studied research methodology for obtaining consensus among experts to define appropriate clinical care. Of 30 potential experts identified, 22 met criteria as expert in co-occurring ASD and GD youth and participated. Textual data divided into the following data nodes: guidelines for assessment; guidelines for treatment; six primary clinical/psychosocial challenges: social functioning, medical treatments and medical safety, risk of victimization/safety, school, and transition to adulthood issues (i.e., employment and romantic relationships). With a cutoff of 75% consensus for inclusion, identified experts produced a set of initial guidelines for clinical care. Primary themes include the importance of assessment for GD in ASD, and vice versa, as well as an extended diagnostic period, often with overlap/blurring of treatment and assessment.

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Section: Young Adulthoodmentioning

confidence: 99%

Initial Clinical Guidelines for Co-Occurring Autism Spectrum Disorder and Gender Dysphoria or Incongruence in Adolescents

Strang

Meagher

Kenworthy

et al. 2016

Journal of Clinical Child & Adolescent Psychology

170

128

View full text Add to dashboard Cite

show abstract

“…The first thing to draw attention to, at least where a patient’s experience of their own body in this situation is concerned, is that upon entering the treatment room, and increasingly throughout the consultation, Seb exhibits what—to this part-fictional GP—appears to be heteronomous and irrational movements, which, when considered alongside a patient’s seemingly irrational decisions or inability to decide, are often taken to be indicative of an absence of autonomy (Faso et al 2015 ; Nolan and McBride 2015 ; Parsi and Elster 2015 ; Sheppard et al 2016 ; Graber 2017 ; Kapp et al 2019 ; Späth and Jongsma 2020 ).…”

Section: What Does the Body Mean For Autonomy In Medical Decision Mak...mentioning

confidence: 99%

“…When considered in relation to a framework that identifies autonomy purely with capacities for reason and cognitive processes of rational reflection, seemingly irrational or socially unacceptable behaviours could be judged as offering support to this assumption and, as a matter of principle, lead one to infer that the patient, rather than being temporarily inhibited from making an autonomous decision, is cognitively incapable of making such a decision altogether. For instance, although some individuals with autism can be cognitively impaired (Matson and Shoemaker 2009 ; Goldin et al 2014 ), a diagnosis of autism is taken as a reason to be sceptical about autonomy in general (Parsi and Elster 2015 ; Graber 2017 ; Späth and Jongsma 2020 ). Indeed, the conflation of autonomy, cognitive capacities, and rational behaviour has led to assumptions that autistic individuals are not self-aware or able to develop or organise a way of life according to their preferences, goals, and interests (Späth and Jongsma 2020 ).…”

Section: What Does the Body Mean For Autonomy In Medical Decision Mak...mentioning

confidence: 99%

Towards a concept of embodied autonomy: In what ways can a patient’s body contribute to the autonomy of medical decisions?

Lewis

Holm

2023

Med Health Care and Philos

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Abstract“Bodily autonomy” has received significant attention in bioethics, medical ethics, and medical law in terms of the general inviolability of a patient’s bodily sovereignty and the rights of patients to make choices (e.g., reproductive choices) that concern their own body. However, the role of the body in terms of how it can or does contribute to a patient’s capacity for, or exercises of their autonomy in clinical decision-making situations has not been explicitly addressed. The approach to autonomy in this paper is aligned with traditional theories that conceive autonomy in terms of an individual’s capacities for, and exercises of rational reflection. However, at the same time, this paper extends these accounts by arguing that autonomy is, in part, embodied. Specifically, by drawing on phenomenological conceptions of the experience of autonomy, we argue that, in principle, the body is a necessary component of the capacity for autonomy. Secondly, through the presentation of two different cases, we highlight ways in which a patient’s body can contribute to the autonomy of treatment choices. Ultimately, we hope to encourage others to explore additional conditions under which a concept of embodied autonomy should be employed in medical decision making, how its underlying principles might be operationalised in clinical situations, and its consequences for approaches to patient autonomy in healthcare practice, policy, and law.

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“…The first thing to draw attention to, at least where a patient's experience of their own body in this situation is concerned, is that upon entering the treatment room, and increasingly throughout the consultation, Seb exhibits what-to this part-fictional GP-appears to be heteronomous and irrational movements, which, when considered alongside a patient's seemingly irrational decisions or inability to decide, are often taken to be indicative of an absence of autonomy (Faso et al 2015;Nolan and McBride 2015;Parsi and Elster 2015;Sheppard et al 2016;Graber 2017;Kapp et al 2019;Späth and Jongsma 2020).…”

Section: What Does the Body Mean For Autonomy In Medical Decision Mak...mentioning

confidence: 99%

“…When considered in relation to a framework that identifies autonomy purely with capacities for reason and cognitive processes of rational reflection, seemingly irrational or socially unacceptable behaviours could be judged as offering support to this assumption and, as a matter of principle, lead one to infer that the patient, rather than being temporarily inhibited from making an autonomous decision, is cognitively incapable of making such a decision altogether. For instance, although some individuals with autism can be cognitively impaired (Matson and Shoemaker 2009;Goldin et al 2014), a diagnosis of autism is taken as a reason to be sceptical about autonomy in general (Parsi and Elster 2015;Graber 2017; Späth and Jongsma states, and the cognitive processes that have traditionally been theorised as the primary components of autonomous choice (Davidson 2010;Kapp et al 2019). These claims have also received theoretical support (see, e.g., Pellicano and Burr 2012).…”

Section: Case 1: Stimming In Patients With Autism Spectrum Disordermentioning

confidence: 99%

Towards a Concept of Embodied Autonomy: In what ways can a Patient’s Body contribute to the Autonomy of Medical Decisions?

Lewis¹,

Holm²

2022

Preprint

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“Bodily autonomy” has received significant attention in bioethics, medical ethics, and medical law in terms of the general inviolability of a patient’s bodily sovereignty and the rights of patients to make choices (e.g., reproductive choices) that concern their own body. However, the role of the body in terms of how it can or does contribute to a patient’s capacity for, or exercises of their autonomy in clinical decision-making situations has not been explicitly addressed. The approach to autonomy in this paper is aligned with traditional theories that conceive autonomy in terms of an individual’s capacities for, and exercises of rational reflection. However, at the same time, this paper extends these accounts by arguing that autonomy is, in part, embodied. Specifically, by drawing on phenomenological conceptions of the experience of autonomy, we argue that, in principle, the body is a necessary component of the capacity for autonomy. Secondly, through the presentation of two different cases, we highlight ways in which a patient’s body can contribute to the autonomy of treatment choices. Although the primary aim is to argue that autonomy is, in part, embodied, we also outline general principles for the future development of a full-on theory of embodied autonomy. Ultimately, we hope to encourage others to explore additional conditions under which a concept of embodied autonomy should be employed in medical decision making, how its underlying principles might be operationalised in clinical situations, and its consequences for approaches to patient autonomy in healthcare practice, policy, and law.

show abstract

A Life of One's Own: Challenges in the Transition from Childhood to Adulthood with Autism Spectrum Disorder

Cited by 8 publications

References 10 publications

Initial Clinical Guidelines for Co-Occurring Autism Spectrum Disorder and Gender Dysphoria or Incongruence in Adolescents

Initial Clinical Guidelines for Co-Occurring Autism Spectrum Disorder and Gender Dysphoria or Incongruence in Adolescents

Towards a concept of embodied autonomy: In what ways can a patient’s body contribute to the autonomy of medical decisions?

Towards a Concept of Embodied Autonomy: In what ways can a Patient’s Body contribute to the Autonomy of Medical Decisions?

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