Autism – The Ethical Issues

Tim Cadman, PhD

IntroductionAim: 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

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

What are the ethical issues? Theoretical background Conceptualisation of autism (disorder vs

distinct cognitive style) Human flourishing and the quality of life of

autistics

Theoretical issues 1: Medical vs Social Conception of AutismMedical 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’

Theoretical issues 1: Medical vs Social Conception of AutismSocial 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)

Theoretical issues 1: Medical vs Social Conception of AutismMedical 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

Theoretical issues 1: Medical vs Social Conception of AutismConclusion 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

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

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

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

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

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.

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

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