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

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’
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.

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)
UNION OF THE PHYSICALLY IMPAIRED AGAINST SEGREGAGATION

7. 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.

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
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.

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
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

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
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

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
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.

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
- 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

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.
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)

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
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.

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