Autism – The Ethical Issues

1. Autism – The Ethical Issues Tim Cadman, PhD

2. Introduction Aim: to introduce the ethical, social and philosophical issues Overview: • Ethical issues • Theoretical background • Medical vs Social conceptions of autism • Human flourishing • Practical questions • Choosing non-autistic children • Behavioural interventions • Resource allocation • Conclusions

3. What are the ethical issues? Practical: • Development of technology to choose non-autistic children (antenatal screening, selective implantation, termination) • Acceptability of certain behavioural interventions • Decisions about the allocation of resources

4. What are the ethical issues? Theoretical background • Conceptualisation of autism (disorder vs distinct cognitive style) • Human flourishing and the quality of life of autistics

5. Theoretical issues 1: Medical vs Social Conception of Autism Medical model of disability • Still dominant model in some quarters • To be disabled is to be impaired in a way which inherently limits one’s functioning • Disability is a ‘problem’ which lies with the affected person • It is a ‘harmed condition’

6. Theoretical issues 1: Medical vs Social Conception of Autism Social model of disability • Acknowledgement of differences from the norm • Impairment ≠ disability • Impairments disabling only because of circumstances of society (e.g. Achondroplasia) • “Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society” (UPIAS)

7. Theoretical issues 1: Medical vs Social Conception of Autism Medical • Autism as a disorder (“ASD”) • Autism as inherently impairing • Treatment and cure Social • Autism as a distinct cognitive style • Difficulties caused by attitudes and structures of society • Autism analogous to ethnicity or sexuality

8. Theoretical issues 1: Medical vs Social Conception of Autism Conclusion • Neither view is satisfactory • More nuanced position required for autism: cluster of different properties • Social explanation persuasive for some difficulties, but not all. • However, useful for debate to draw this distinction

9. Theoretical issues 2: Human flourishing • What does it mean for a life to go well for the person living it? Objective • Certain things are good or bad for a person regardless of their attitudes to those things • E.g. safety and security, friendship, sexual relationships, freedom to pursue one’s interests, knowledge, work, leisure. • Overly paternalistic? Subjective • Experiential account • Desire-satisfaction account

10. Theoretical issues 2: Human flourishing • Theory of well-being affects judgements about quality of life of autistic people. • Example 1: Intellectual disability • Objective and subjective accounts conflict • Example 2: Friendship • Objective and subjective accounts may conflict • However, many people with autism have unsatisfied desires for friendship – accounts can coincide

11. Practical issues 1: Choosing non-autistic children Arguments in opposition to technology • Strong opposition from sections of autistic community • Arguments from social model: mislocates problem • Narrow conception of flourishing • Discrimination: implication that autistic lives have less value

12. Practical issues 1: Choosing non-autistic children Arguments in favour of technology • Reproductive autonomy • Genuine concern about quality of life • Procreative beneficence • Balancing autonomy with concerns about social harm

13. Practical issues 2: Behavioural Interventions • Are certain behavioural interventions harmful? • E.g. interventions designed to reduce hand-flapping or encourage eye contact. • These could cause anxiety and distress • Particular worry as children aren’t able to consent to these • Social model argues that there is nothing wrong with these behaviours • Interventions should focus on improving well-being • Attitudes in society need to be tackled.

14. Practical issues 3: Allocation of Resources • Where should resources be targeted? • Research into causes and early identification • Providing support and enacting social change • Issue of intergenerational justice • Decision making process needs to be democratic • Include views of those with autism, philosophers and ethicists, carers, policy makers, scientists and the public

15. Conclusions • Complex theoretical and practical issues • Important to note diversity of opinion within autistic community • Agreement may never be reached • Key is to involve range of opinion in debate