2IntroductionAim: to introduce the ethical, social and philosophical issuesOverview:Ethical issuesTheoretical backgroundMedical vs Social conceptions of autismHuman flourishingPractical questionsChoosing non-autistic childrenBehavioural interventionsResource allocationConclusionsRaises number of issues.Aim to give balanced overviewNeutral between “autistic” and “person with autism”.
3What are the ethical issues? Practical:Development of technology to choose non-autistic children (antenatal screening, selective implantation, termination)Acceptability of certain behavioural interventionsDecisions about the allocation of resources
4What are the ethical issues? Theoretical backgroundConceptualisation of autism (disorder vs distinct cognitive style)Human flourishing and the quality of life of autistics
5Theoretical issues 1: Medical vs Social Conception of Autism Medical model of disabilityStill dominant model in some quartersTo be disabled is to be impaired in a way which inherently limits one’s functioningDisability is a ‘problem’ which lies with the affected personIt is a ‘harmed condition’Theoretical issues inform practical issues.How do we understand autism: (i) disorder, requiring intervention, (ii) diverse cognitive style to be celebratedMedical 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 societyQuote: UNION OF THE PHYSICALLY IMPAIRED AGAINST SEGREGAGATION.
6Theoretical issues 1: Medical vs Social Conception of Autism Social model of disabilityAcknowledgement of differences from the normImpairment ≠ disabilityImpairments 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
7Theoretical issues 1: Medical vs Social Conception of Autism Autism as a disorder (“ASD”)Autism as inherently impairingTreatment and cureSocialAutism as a distinct cognitive styleDifficulties caused by attitudes and structures of societyAutism analogous to ethnicity or sexualityMedical: autism as disorder. Implicit in definite (ASD).Social: distinct cognitive style which is not inherently impairingProblems caused by society which needs to be changedCure inappropriate, like trying to cure homosexuality.
8Theoretical issues 1: Medical vs Social Conception of Autism ConclusionNeither view is satisfactoryMore nuanced position required for autism: cluster of different propertiesSocial explanation persuasive for some difficulties, but not all.However, useful for debate to draw this distinctionLike 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.
9Theoretical issues 2: Human flourishing What does it mean for a life to go well for the person living it?ObjectiveCertain things are good or bad for a person regardless of their attitudes to those thingsE.g. safety and security, friendship, sexual relationships, freedom to pursue one’s interests, knowledge, work, leisure.Overly paternalistic?SubjectiveExperiential accountDesire-satisfaction accountImportance: 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 onSubjective: Objective theories too paternalisticSubjective: Experiential and desire-satisfaction
10Theoretical issues 2: Human flourishing Theory of well-being affects judgements about quality of life of autistic people.Example 1: Intellectual disabilityObjective and subjective accounts conflictExample 2: FriendshipObjective and subjective accounts may conflictHowever, many people with autism have unsatisfied desires for friendship – accounts can coincideTheory of well-being affects judgements about quality of autistic life.This can in turn impact on judgements about prevention or desirability of a cureObjective – might say one is impaired regardless of how they judge their lifeSubjective – evaluation depends on individual’s perspectiveExample 1: IDExample 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
11Practical issues 1: Choosing non-autistic children Arguments in opposition to technologyStrong opposition from sections of autistic communityArguments from social model: mislocates problemNarrow conception of flourishingDiscrimination: implication that autistic lives have less valueI’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 flourishingConstitutes 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.
12Practical issues 1: Choosing non-autistic children Arguments in favour of technologyReproductive autonomyGenuine concern about quality of lifeProcreative beneficenceBalancing 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 ethicsImportant to recognise plurality of reasonable opinionFunction of liberal democracy
13Practical 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 distressParticular worry as children aren’t able to consent to theseSocial model argues that there is nothing wrong with these behavioursInterventions should focus on improving well-beingAttitudes 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)
14Practical issues 3: Allocation of Resources Where should resources be targeted?Research into causes and early identificationProviding support and enacting social changeIssue of intergenerational justiceDecision making process needs to be democraticInclude views of those with autism, philosophers and ethicists, carers, policy makers, scientists and the publicMuch 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.
15Conclusions Complex theoretical and practical issues Important to note diversity of opinion within autistic communityAgreement may never be reachedKey is to involve range of opinion in debate