Autism – The Ethical Issues Tim Cadman, PhD

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 Raises number of issues. Aim to give balanced overview Neutral between “autistic” and “person with autism”.

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 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’ Theoretical issues inform practical issues. How do we understand autism: (i) disorder, requiring intervention, (ii) diverse cognitive style to be celebrated Medical model: to be disabled is to be impaired in a way which inherently limits one’s functioning. It is to be in a ‘harmed condition’, which one has rational reason not to be in (Harris, 2000). Social model: People differ mentally and physically from the norm, and that they have certain impairments. Impairments not inherently disabling; only so because of circumstances of society Quote: UNION OF THE PHYSICALLY IMPAIRED AGAINST SEGREGAGATION.

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) UNION OF THE PHYSICALLY IMPAIRED AGAINST SEGREGAGATION

Theoretical issues 1: Medical vs Social Conception of Autism 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 Medical: autism as disorder. Implicit in definite (ASD). Social: distinct cognitive style which is not inherently impairing Problems caused by society which needs to be changed Cure inappropriate, like trying to cure homosexuality.

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 Like many positions in philosophy, neither extreme is plausible. Both fail to take account of the insights of the other. Some conditions involve impairments which cannot be entirely overcome. Autism also unique condition (unlike blindness): contains cluster of differences. Need more nuanced view which assesses each aspect of ASC separately. Need to make the eyesight/self-harm and resistance to change point here.

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 Importance: reproductive choices depend on judgements about the likely quality of life of one’s off-spring. Objective: certain things are good or bad for a person regardless of their attitudes to those things. Provides lists of human goods: EG safety and security, friendship, sexual relationships, freedom to pursue one’s interests, knowledge and so on Subjective: Objective theories too paternalistic Subjective: Experiential and desire-satisfaction

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 Theory of well-being affects judgements about quality of autistic life. This can in turn impact on judgements about prevention or desirability of a cure Objective – might say one is impaired regardless of how they judge their life Subjective – evaluation depends on individual’s perspective Example 1: ID Example 2: Friendship. Because of difficulties understanding the intentions of others, difficulties engaging in flexible, reciprocal conversation, difficulties in verbal and non-verbal communication, and difficulties in sharing and empathy, many people with autism are very socially isolated, have few or no friends, and struggle with professional and other relationships. Positive aspects: These could include strong persistent interests, attention to detail, unusual memory, fascination with systems and patterns, and ability to concentrate for long periods that may be conducive to creativity and originality

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 I’ll show how the theoretical issues bear on these practical issues. Strong arguments against research into genetic screening by some members of autistic community. Social model: argues that prevention and cure mislocates the problem, which lies in society. Represents the rejection of diversity, and a narrow view of human flourishing Constitutes discrimination. Implies that autistic lives have less value than non-autistic lives. Response: distinction between moral status and prudential value. Fallacy to argue that judgements about the latter imply judgements about the former. Analogy: You could argue that become paralysed results in reduction of well-being, without implying that the paralysed have less value as people.

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 - Potential parents who were concerned about the quality of life of an autistic child would have legitimate concerns - They would not necessarily be guilty of ignorance or discrimination. Motivated by desire that their children have the best lives possible. Made on the basis of reasonable judgements about quality of life. How do we settle this? Important to draw distinction between law and ethics Important to recognise plurality of reasonable opinion Function of liberal democracy

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. Concerns about ethics of certain behavioural and pharmacological interventions. Issues of consent when treatment imposed in children or those with ID. 1. Quote by Asperger ““this boy’s positive and negative features are two naturally necessary, connected aspects of one really homogenously laid out personality. We can also express it like this: the difficulties this boy has with himself as well as his relationship to the world, are the price he has to pay for his special gifts.” 2. Behavioural interventions to reduce motor stereotypies or encourage eye contact are harmful and wrongly targeted. Social change needed. 3. Again, from the social model be mindful about interventions aimed at reducing autism symptoms. Real question is whether the intervention is in their interests; whether it is likely to promote their well-being. “an important criterion for whether they undergo treatment is whether it is in their interests, understood as a recognizable interest from their perspective - i.e., what…enables their faring well (Fenton, xx)

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 Much resources are currently spent on investigating the causes of autism and searching for biomarkers. Is this the appropriate balance? Should funding be spent more on providing services and enacting social change? Important issues of intergenerational justice are raised. Solution is democratic approach to resource distribution and inclusion of multiple voices in commissioning research.

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