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ETHICS AND AUTISM
Richard Mills
SIKON: Denmark: April 2017
“Buffett found it 'extraordinary' that academics studied such things.
They studied what was measurable, rather than what was
meaningful. 'As a friend [Charlie Munger] said, to a man with a
hammer, everything looks like a nail.”
Lowenstein on Buffett; ‘the making of the American Capitalist’
Ethics
From the Greek – Etikos
• Theory or system of morality
• Values
• Judgements
• A discussion on ethics is a discussion of values and judgements
and how these are formed, maintained and changed
Summary: Ethics
Ethical behaviour
Sanctity and respect for human life
Respect for human rights and dignity
Competence in decision making
Recognition of conflicts
Questions on ethics in autism
• Do we need different or ‘special’ ethics for autism?- Is it
possible for a unitary approach to ethics in autism be taken?
• How do we balance protection of the vulnerable with rights
and freedoms? (manage risk)
• How do we address conflicts of interest ?
• What or where is the place for the autistic voice?
Ethics are embedded in prevailing culture values and ideas- they are not fixed
The prevailing view of autism has undergone radical change in the past decade
The future view of autism and ethical dimension will be shaped by what we say and what we do
Lessons from history Prevailing ethical perspectives on intellectual disability
‘You will find that the (mentally defective) child is weak and
wanting in resisting power. It is perhaps fortunate that this is so
and that majority never reach the age of puberty’
Hutchison and Montcrieff
Lectures on Diseases of Children
first published 1904: quotation from 9th edition 1948
What are the ethical questions in autism?
Practical questions
• Will the development of new technologies such as antenatal
screening, selective implantation lead to our ability to choose
non-autistic children?
• How acceptable or desirable are interventions that focus on
elimination of autistic behaviours?
• Where should money be spent – preventing autism or
supporting autistic people?
What are the ethical questions in autism?
Theoretical questions
• Do we even know what autism is?
• Is autism a disease/disorder-or a different way of thinking as a result
of different brain wiring – like left-handedness?
• Is the quality of autistic life different to non-autistic – how? and if it is
why?
• Does research into the causes and ‘treatments’ of autism create
problems for autistics e.g. Abortion of ‘at risk’ foetus. Self fulfilling
prophesy? Harmful procedures? Stigma?
• Societal problems with accepting ‘difference’ ….. Unless
Ethics and ‘difference’
Historical roles and responses associated with
perceptions of ‘difference’
• Difference - positively perceived – embracing-
‘superhuman’ not like ‘us’ – but a positive role
model – to be as like as possible
• Difference - negatively perceived – hostile - not
‘fully’ human- not like ‘us’ - but a negative role
model – to be as unlike as possible
Ideas about autism
Medical model
(autism as a disorder)
Social model
‘autism as a difference’
Negatively perceived
(‘deviant’)
Social model
‘autism as a difference’
Positively perceived
(‘non-deviant’)
Ideas about autism
Medical model of autism (disease/disorder)
• Autism as harmful
• Remains the dominant model internationally
• Imagery (e.g. white coats) - language and terminology
(sickness/disease, epidemic, treatment, cure etc.)
• Autism is a problem to be prevented, eradicated cured or
ameliorated –belongs to the ‘sufferer’
• Numerous medical ‘treatment’ or pseudo-medical options e.g.
Chelation, supplements, diets, medications
Medical model
(autism as a disorder)
Social model
‘autism as a difference’
Negatively perceived
(‘deviant’)
Social model
‘autism as a difference’
Positively perceived
(‘non-deviant’)
Ideas about autism
Social model of autism (negatively perceived)
• Autism as harmful
• Rejection of medical model; Autism seen as a difference
– but deviant
• Societal response disabling - denial of opportunity
• Approaches geared to making the autistic less autistic /non-autistic
(eliminate ‘autistic’ behaviour) : autism located in the person
• Eligibility for support based on degree of severity of problems
created
• Autistics marginalised unless doing things seen as ‘valued’
Medical model
(autism as a disorder)
Social model
‘autism as a difference’
Negatively perceived
(‘deviant’)
Social model
‘autism as a difference’
Positively perceived
(‘non-deviant’)
Ideas about autism
Social model of autism (autism positively perceived)
• Autism not harmful
• Rejection of medical model: Autism seen as a difference – but not
‘deviant’ ; distinct cognitive style – strengths – identity
• Issues of difference (impairment) versus disability diminished –concept
of neurodiversity
• Societal response accepting /enabling – accommodation/ opportunity
• Approaches geared to embracing difference – e.g. ‘reasonable
adjustment’- analogous to sexual orientation, race, gender.
• Autistic emancipation- autistic rights movement- self advocacy
Medical model
(autism as a disorder)
Social model
‘autism as a difference’
Negatively perceived
(‘deviant’)
Social model
‘autism as a difference’
Positively perceived
(‘non-deviant’)
SummaryModel Described as How perceived Response
Medical disease/disorder Negatively Rejection- PreventionTreatmentAmelioration Elimination of symptoms Focus on elimination of deficits
Social difference Negatively Rejection- Prevention Treatment Elimination of behaviours Focus on elimination of deficits
Social difference Positively Acceptance-empowermentAdjustment OpportunityFocus on development of strengths
Medical v social perspectives
• How helpful are such polarised views ?
• What of difficulties?
• Are the models adequate in covering the real issues facing autistic children
and adults and families ?
• Can issues be neatly put down to medical or social factors?
Quality of life
• Would it be more helpful to look at human rights and quality of life ?
• What are the issues in human rights and quality of life for autistic
people?
• Example - Indicators from our research on women suggest that
compared to non-autistic women autistic women have a different
experience of human rights and quality of life
• Subjective wellbeing as measured by the Personal Wellbeing Index
(PWI)
PWI results: comparison of UK autism group v controls
0
10
20
30
40
50
60
70
80
90
100
degree of satisfaction with life
autism
20
PWI results: comparison of UK autism group v controls
0
10
20
30
40
50
60
70
80
90
100
degree of satisfaction with life
autism
control
21
Perspectives
• Models do affect perceptions and attitudes to autism
• Risk taking v autonomy (e.g. paternalism)
• How important are non-autistic definitions and concepts of
quality of life e.g. friendships/ relationships
• Where is the common ground?
• e.g. Illness? Happiness -unhappiness? Satisfaction with life?
Law- breaking?
Perspectives
For research into autism causes
• Choice – especially if in the ‘at risk’ group
• Concern about quality of life of an autistic existence –
improving outcome
• Expansion of science – with understanding comes benefit
• Concern about so called ‘burden of care’ of families and the
state
Perspectives
Against research into autism causes
• Strong opposition from many autistic people – but not all
• Distraction from the main issues of acceptance and discrimination
• Utopian view of what a ‘good’ life is- imposition of neurotypical (non-
autistic) views of quality of life ‘othering’ ‘normalising’
• Implication that autistic lives matter less
• Genetic research can become a self-fulfilling prophesy e.g. “you can’t
beat the genome”
Perspectives
On interventions
• Why intervene?
• To improve quality of life for the person?
• To improve quality of life for the family?
• To reduce cost to the State?
• Other reason (e.g. we just don’t like to see what we see (not
like ‘us’) – to make money etc)
Perspectives
On interventions
• Are interventions safe?
• Are standards of intervention (and research) lower in autism?
• Given the lack of agreement on what autism is - is it OK for
parents to experiment with interventions that promise
improvement ?
• What of consent?
Perspectives
On interventions
• Is it OK to target autism symptoms that might have a value for the
person (e.g. stimming) ?
• Do some treatments cause additional problems for the child – family ?
• Should the focus of intervention be happiness or quality of life- what
would be wrong with that ?
• How far does the current autism narrative interfere with acceptance by
society ?
Perspectives
On the future of research
• Are current standards adequate- is there a lower standard in
autism research?
• Who decides on the research and intervention agenda- where
is the autistic voice?
• Should research focus on causes of autism, treatments or
quality of life. What happens now ?
What are the areas of autism
research in the UK?
Thanks to Liz Pellicano
Thanks to Liz Pellicano
1%
5%
56%
15%
18%
5%
Which of these areas attract
the most money in the UK?
Discussion
• Whose priorities are these ?
• Are autistic priorities different ?
• What of non-speaking autistic people or those without ‘special
talents’? And is the celebration of special talents in itself dubious?
• Should we not value people for their humanity alone?
• Who ‘speaks’ for autism ?
• Is it possible to have a unitary ethical framework?
• What do we do about practical issues ?
Discussion
Robert was diagnosed with Asperger syndrome at the age of 6
years. He attended main stream school and now aged 18 yrs has
left with good grades. He wants to join the armed forces but has
been told that the diagnosis prevents this. He has asked to be
‘undiagnosed’
Discussion
John and Angela have two children and Angela thinks she is
pregnant with a third
Their first child Evan 3 has a diagnosis of autism. Their second
child William is 2 and there are concerns about his development.
She is asking for advice as to whether to proceed with the
pregnancy
Discussion
Mette is a single parent. Her only child Felix was diagnosed
autistic age 3 years . He is now 14. He does not speak. Felix has
been on a gluten and dairy free diet for the past 10 years. He has
a daily supplements and vitamins and in the past has undergone
a Son-rise programme and a Lovaas programme. Mette has
heard of a new programme that involves daily enemas following
an injection of a drug called Scretin and would like to try this
with Felix
Clinic X offers diagnostic and early intervention services.
What are the ethical implications?
• John and Martha met at a day service for autistic adults.
• Both have a diagnosis of autism
• They want to marry and one day have children
• John and William met at a day service for autistic adults.
• Both have a diagnosis of autism
• They want to marry and one day have children
• Joanna is 45 years old and lives with her parents.
• She does not speak.
• She seems to enjoy being by herself surrounded by her familiar
things and becomes extremely distressed when she leaves the
house. She has not been accepted by any service organisation as a
result of ‘behavioural problems’.
• Her family are worried about what will happen to her when they are
no longer around to support her
• They are being advised to encourage her to go out and try new things
to help her be more tolerant of change in routine and other people
Summary: Ethics
• Current attitudes to autism and the autism narrative is at best
confused- (autism support charities are among the worst offenders!)
• Ethics are not static - linked to changing culture, knowledge and
belief systems- and values
• Ethics are embedded in societal roles and expectations- both implicit
and explicit
• Ethics are subject to political, cultural, moral and practical influences
and require nuanced approach that reflects the diversity of society
and of autism itself
Conclusion
• Ethical issues in autism remain complex theoretically and
practically
• The need to offer protection to the vulnerable at the same time
promoting equality of rights and opportunity
• Continued debate around the unknown ‘nature’ of autism
makes consensus difficult- even within the autistic community
Conclusion
• Involving different and conflicting viewpoints in the debate is
easier said than done – they may be diametrically opposed –
some critics argue autism does not exist
• Sensitivity, vigilance and autistic involvement and participation
is essential to address conflicts and move forward; ‘the bigger
picture’
With grateful thanks to
Julie Beadle-Brown
Tim Cadman
Tony Charman
Adam Dinsmore
Helen Ellis
Bernard Fleming
The Goth
Judy Gould
Pat Howlin
Sylvia Kenyon
Nicki Martin
Michael McCreadie
Gary Mesibov
Damian Milton
Liz Pellicano
AIP Group of autistic women
EU LLL Programme
Future Made Together team
SAC Research Autism
