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Ethics and Social Welfare
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Ethical Dilemmas in Social Work
Practice with Disabled People: Young
Adults with Autism
David Wilkins
Published online: 27 Feb 2012.
To cite this article: David Wilkins (2012) Ethical Dilemmas in Social Work Practice with
Disabled People: Young Adults with Autism, Ethics and Social Welfare, 6:1, 97-105, DOI:
10.1080/17496535.2012.651892
To link to this article: http://dx.doi.org/10.1080/17496535.2012.651892
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Ethical Dilemmas in Social Work Practice
with Disabled People: Young Adults with
Autism
David Wilkins
This paper discusses ethical dilemmas related to social work practice with young
adults with autism. It does so via the use of a case study taken from real life
practice. The different viewpoints and ethical frameworks of the young person,
the young persons parents and the Local Authority (or the Local Authority social
worker) are considered and discussed. The competing rights of the 2006 United
Nations Convention on the Rights of Persons with Disabilities (and the Optional
Protocol) are also considered.
Keywords Social Work; Disabled; Disability; Autism; Ethics; Ethical Dilemmas
Introduction
All areas of social work are fraught with ethical dilemmas, and social work with
disabled people is no different. This paper explores one particular ethical
dilemma, highlighting the balance between rights and responsibilities and the
interpretation of a persons wishes and feelings and the weight to place upon
them. A real-life case study will be used to illustrate these issues, although
names and other details have been changed to maintain confidentiality. Links
will be drawn with the ethical theories of consequentialism (or utilitarianism),
deontology and pragmatism.
Autism
According to the UK National Autistic Society, autism is a lifelong developmental
disability that affects how a person communicates with, and relates to, other
ISSN 1749-6535 print/1749-6543 online/12/010097-09
# 2012 Taylor & Francis
http://dx.doi.org/10.1080/17496535.2012.651892
David Wilkins is a former Senior Lecturer in Social Work at Anglia Ruskin University, a PhD scholar at
the University of Kent (supervised by Prof. David Shemmings) and a manager in the London Borough of
Enfields disabled childrens social work team. Correspondence to: David Wilkins, 31 Cheviot Close,
Enfield EN1 3UZ, UK. E-mail: david.wilkins@enfield.gov.uk
ETHICS AND SOCIAL WELFARE VOLUME 6 NUMBER 1 (MARCH 2012)
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people. There are three main areas of difficulty that people with autism
experience, known as the triad of impairments*social communication, social
interaction and social imagination (Wing & Gould 1978). People with autism may
have difficulty in understanding verbal and non-verbal language and struggle to
understand other peoples emotions, thoughts and feelings. People with autism
may struggle to understand the unwritten rules of social situations which seem
to come naturally to most people without autism*this can make it difficult for
people with autism to predict the consequences of their own behaviour. This issue
will feature as part of the case study below (see Howlin 1998; Zager 1999; Wilkins
2010). One example that helps to illustrate some of these difficulties is the Sally-
Anne task (see Baron-Cohen et al. 1985, p. 41):
There were two doll protagonists, Sally and Anne. First, we checked that the
children knew which doll was which (Naming Question). Sally first placed a
marble into her basket. Then she left the scene, and the marble was transferred
by Anne and hidden in her box. Then, when Sally returned, the experimenter
asked the critical Belief Question: Where will Sally look for her marble?. If the
children point to the previous location of the marble, then they pass the Belief
Question by appreciating the dolls now false belief. If however, they point to the
marbles current location, then they fail the question by not taking into account
the dolls belief. These conclusions are warranted if two control questions are
answered correctly: Where is the marble really? (Reality Question); Where
was the marble in the beginning? (Memory Question)
Most (neuro-typical
1
) people know the answer*Sally will look in the basket. Most
people with autism will answer that Sally will look in the box. This is because,
according to Baron-Cohen et al. (1985), people with autism lack a theory of
mind and are unable to imagine the scenario from Sallys point of view.
According to Baird et al. (2006), there are over 500,000 people in the United
Kingdom with autism or about 1 in 100 people (the study uses the term autism
to describe a variety of conditions, including Aspergers syndrome, classic autism
and others). Given that all disabled children are automatically children in need
(s. 17, Children Act 1989), this makes it highly likely that many social workers will
encounter a person with autism even if they are not working specifically with
disabled people. According to Rosenblatt (2008), autism is a serious, life-long
condition that can have a profound effect on individuals and families. Unlike
physical impairments, such as cerebral palsy, autism is a hidden disability*
you cannot always tell that someone has it (Rosenblatt 2008). This can add to the
challenges that people with autism can face. For example, over 40 per cent of
children with autism have been bullied in school and one in five will face school
exclusion (Batten et al. 2006). At least one in three adults with autism will
experience severe mental health difficulties directly attributable to a lack of
support; only 15 per cent of adults with autism are in full-time paid employment
1. Neuro-typical is a phrase coined by members of the autism community, and the National Autistic
Society recommends its usage in place of the word normal.
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and 61 per cent of those who are unemployed want to work (Rosenblatt 2008;
Redman et al. 2009).
Case Study
AB is a 21-year-old woman with autism who lived at home with her mother and
father and two older brothers. ABs father contacted the Local Authority to ask
for more support in order to keep AB safe. ABs father reported that her
behaviour was becoming more difficult and dangerous to manage. AB would often
go out without telling anyone where she was going and not return until late at
night. On several occasions, AB was reported as missing before being returned
home by police. If anyone tried to stop AB from going out, she would become
aggressive. AB was attending a further education college but over time she
gradually withdrew from the college and spent more time out in the community.
ABs family was concerned about who she was spending time with and whether
she was using cannabis or even dealing cannabis herself. ABs father was con-
cerned that she was being taken advantage of because of her autism. AB re-
fused to say who her friends were and she was reluctant for her father to meet
them.
A support agency was contacted to work with AB, to engage her in constructive
activities and offer mentoring. ABs father asked for 24-hour supervision to be
provided. When this was declined, ABs father requested that she be accom-
modated out of the area. For a time, AB was supported to spend weekends with
short-break foster carers and although this initially worked well, over time AB
became aggressive towards the carers and they withdrew. AB had a strong
preference to remain at home or, at the least, to remain in the local area. Even-
tually, the situation escalated and AB was arrested following an assault on
another young person. AB was then accommodated by the Local Authority as her
family felt unable to have her return home.
A Triad of Viewpoints
Over the course of the work, three distinct viewpoints emerged*ABs, ABs
parents and ABs social worker (or the Local Authority). Each party had a very
different view about what would be best for AB.
AB did not see herself as disabled and did not like the label of autistic.
AB wanted to lead what she saw as a normal life*going out with friends,
exercising her independence and making decisions. AB was aware that she was
treated differently from her peers*she knew that other people her age could go
out when they liked and did not have to account for themselves to their parents.
AB was sensitive to any suggestion that she needed to be treated differently, and
in part this seemed to explain some of her aggressive behaviour. AB did not want
ETHICAL ISSUES IN PRACTICE 99
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the support on offer and resented the involvement of the Local Authority. In a
sense, AB can be seen as acting within a deontological framework. This approach
determines rightness from actions themselves, rather than from third-party
perspectives or by considering consequences (Waller 2005). From this, it follows
that an action can be considered good even if negative consequences arise.
A simple example would be telling the truth, even if by doing so another person
was harmed (such as a parent reporting their own child to the police for pos-
session of cannabis). AB wanted her actions to be considered independently of
their consequences. If we accept the deontological position, then it would
usually follow that exercising increasing independence is a good thing for young
adults, in which case ABs actions should also be considered as right.
ABs parents viewed her as uniquely vulnerable and felt she was in need of
protection because she did not understand the consequences of her own actions.
They viewed police involvement as unhelpful because they felt AB did not
understand the social significance of police sanctions and, therefore, they did
not offer any kind of deterrent to her. ABs parents highest priority was ABs
safety, even if this meant placing restrictions on AB and not informing her of
her legal rights. Essentially, ABs parents could be seen as operating within a
consequentialist framework of ethics (a phrase coined by Anscombe 1958). This
approach most obviously differs from the deontological position in that it is on
their consequences that actions are judged as right or otherwise. Therefore,
acts that produce good outcomes are right and acts that produce negative
outcomes are not. At issue is a consideration of what should count as good
consequences and on what basis such judgements are made (Scheffler 1988).
Taking this approach would suggest that any actions taken to protect AB from
harm are justified by more positive long-term outcomes for AB, even if in the
short term ABs rights are overridden.
ABs social worker essentially felt that a balance needed to be struck between
AB and her parents. The social worker acknowledged ABs vulnerability but also
felt that the Local Authority had a duty to respect her wishes and feelings and
inform her of her legal rights. The Local Authority could be seen as operating
within a pragmatic ethical framework (Lekan 2003; LaFollette 2006). Ethical
pragmatists argue that ethical progress is similar to scientific progress, in that
ethical theories can be superseded or improved over time, based on new in-
formation and evidence (see Harris 2011). This approach accepts that ethical
principles are unlikely to be universally applicable, and as society progresses so
ethical values need to progress as well. The approach of the Local Authority
seems to be based upon the relatively recent legal (and ethical) development of
codified, legal rights for disabled people. In other words, the relatively recent
idea of informing a disabled adult of his or her legal rights is evidence of ethical
progress being made over time. Within the United Kingdom, even 50 years ago,
this approach would have been seen as not only highly radical but even as
dangerous and unethical (see Henderson 2011 for a fictionalized but well-
researched account of the life of a disabled person in the United Kingdom in the
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recent past*not so much for the extreme abuse that the main character
experiences but the general attitude shown towards disabled people).
Competing Rights
As a vulnerable adult in England, AB has certain legal rights accorded to her from
national and international law. However, as with many ethical dilemmas, the
difficulty lies not in recognizing that these rights exist but in understanding how
they apply in practice and how to balance competing rights. The different ethical
frameworks of AB, ABs parents and the Local Authority lead to different
conclusions to this question.
For example, according to the United Nations Convention on the Rights of
Persons with Disabilities (and the Optional Protocol; 2006), AB has the rights of
individual autonomy and independence and to make her own choices (article 3),
she has the right to know about her own rights (article 6), the right to live inde-
pendently and be included in the community (article 19) and the right to liberty
(article 14). Taken together these rights suggest that the priority is to enable AB
to make her own choices about whether she wants a support worker with her and
when, about where she lives and with whom she associates. AB should also
be informed that she has these rights. These rights would seem to be good in
themselves (deontological) and not qualified by their consequences (conse-
quentialism). However, AB also has the right to security (article 14) and to
freedom from exploitation, violence and abuse (article 16). These rights suggest
ABs parents are correct to focus on consequences, to prevent her from going out
late at night, from associating with potential criminals and from being exploited
by those who would take advantage of her.
From the social workers point of view, the Convention makes clear that
governments have a duty to inform disabled people of their rights and provide
them with information about their options and choices (article 21). Therefore,
the social worker would be in breach of the Convention (and of the GSCC
(General Social Care Council) Code of Practice for Social Workers) if he or she
did not inform AB of her rights, as ABs parents wanted. The social worker
was also bound to inform AB of all her rights and not just those conducive to
persuading AB to agree with the care plan proposed by her parents. As noted
above, this Convention was adopted by the United Nations as recently as
2006 and is a good example of ethical progress, as identified by pragmatic
ethicists.
However, clearly ABs parents and the social worker did not disagree on the
need to protect AB, but from their different ethical positions they took different
stances on how far it was necessary or permissible (or right) to go in restricting
ABs liberty in order to protect her. Clearly, there are situations in social work
when individual rights are curtailed in order to protect vulnerable individuals and
in such cases the right to family life (article 8, Human Rights Act 1998) does not
ETHICAL ISSUES IN PRACTICE 101
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override a vulnerable persons right to protection from inhuman treatment
(article 3). Where it is clear that a vulnerable individual has been abused,
questions as to the rights of the abuser are relatively unimportant, at least until
the safety of the vulnerable individual is secured. In the case study above, it is
less clear as to what rights should take priority. Taking a clear and distinct ethical
position*such as acting from a strictly consequentialist position*does not
simply resolve the dilemma, as one would still need to identify what outcomes
would qualify as good.
Consequences
One significant difference between ABs parents and the social worker was their
view on the value of imposing consequences on AB. ABs parents were dismissive
of police involvement, arguing that AB did not understand the social role of
the police and that the neuro-typical consequences of their involvement were
irrelevant for AB. From a deontological perspective, it could be argued that the
action of punishing an offender for their offending behaviour is good in-and-of-
itself and therefore, regardless of the consequences (such as the limited impact
on AB), the action should be pursued.
From a consequentialist perspective, in seeking an outcome of changing
ABs behaviour (reducing the level of risk), the means employed to do so are
less important. According to the National Autistic Society, people with autism
will respond to positive reinforcements for their behaviour more than negative
consequences for unwanted behaviour. This view is based on a behaviourist
position that positive (and negative) reinforcement is more likely to alter
behaviour in the long term than simple punishment, which only changes
behaviour temporarily (Montana & Charnov 2008). On this basis, ABs parents
may have been correct to argue that punishment (by the police) would not
be successful for AB. However, ABs parents view also suggested that AB
could not be held fully responsible for her own behaviour. The wider point is
whether AB should be thought of as having moral agency or whether her
behaviour should be understood as a failure of wider support systems, her
family and the Local Authority. The disabled rights movement is predicated on
the understanding that disabled people have (or should have) the same rights
as everyone else (e.g.Bwww.ncb.org.uk/edcm) and there is no suggestion
that allowances should be made for disabled people in the sense of reduced
levels of responsibility. However, translating this into practice, especially when
individuals may have transgressed legal boundaries, is difficult*there is a
debate to be had about whether the individual is wholly responsible or
whether mitigating circumstances, such as a lack of appropriate support,
should be taken into consideration. The 1984 Police and Criminal Evidence
Act (PACE) states that people with mental disorders (including people with
autism) are vulnerable and special consideration should be taken by police
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when arresting and interviewing them*however, there is big difference
between this and suggesting vulnerable adults should not be arrested in
the first place. Clearly, for a person with a mental disorder the outcome of
the criminal justice system may well be different than if the same crime were
committed by a person without a mental disorder, and these differences are
often based on a sense of diminished responsibility. Essentially, this argu-
ment was used by ABs parents and there is some merit to this. However, the
police also have a wider duty to protect the public (a consequentialist
or utilitarian approach) and the idea of diminished responsibility does not
negate this.
Living an Independent Life
The governments strategy for adults with autism in England, published in March
2010, says that public services should support such adults to live indepen-
dently and to find work (seeing these outcomes as good in the consequen-
tialist sense but also, seemingly, in the deontological sense, i.e. they have good
outcomes but are also good in-and-of-themselves). The National Autistic
Society, together with the Government Office of the South West and NHS South
West, have published a good practice guide for working with people with autism
(Higgins 2009), which says that community services should be provided to
vulnerable members of society to help them live as independently as pos-
sible (p. 11). But what does it mean to live as independently as possible?
When working with people with autism, especially when the individual may
not see him or herself as disabled or even particularly vulnerable, what kind of
support is appropriate? If living independently is to have any real meaning,
surely it must include the independence to make poor decisions? For example,
although it might be positive to enable people with autism to succeed in
the job market, genuine independence must also include the freedom to be
economically inactive.
In some ways, this is reminiscent of the debate around disabled people and
sexuality*a story in the Sunday Telegraph on 14 August 2010 claimed that public
money was being used to pay for elderly and disabled people to access lap-
dancing clubs and hire sex workers. As the use of individual budgets increases,
it is possible that these types of situations will occur more frequently; this
debate has divided social workers (Pitt 2010). The issue is, again, what does
independence mean and if it does not include the freedom to make morally
dubious choices, if that is what they are, then why does independence mean
something different for neuro-typical people than it does for a person with
autism? At the same time, it cannot be right for social workers simply to accept
that vulnerable individuals with whom they are working, whether or not they
have autism and whether or not they accept this label, are involved in negative
and potentially risky situations without trying to help (to reduce the risk).
ETHICAL ISSUES IN PRACTICE 103
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One difficulty with any attempt to help people with autism is that many
professionals do not have sufficient expertise to assess their often hidden needs,
especially with regards to questions of independence*people with autism can
often appear to be far more independent than they actually are (Higgins 2009).
Could this have been the case with AB? Was she assessed by the Local Authority as
capable of making informed decisions, even when negative consequences arose,
when in reality she had an impaired ability in this regard? ABs social worker was
placed within a specialist disabled persons team, a team with a national
reputation for good practice. If this social worker and this team lacked specialist,
expert knowledge of autism then what might this say about other, less specialist
teams? What kind of service might people with autism receive from generic social
work teams if it were the case that AB was failed by a specialist, disabled
persons team?
Conclusion
Whether the prevalence of autism is increasing or whether detection and
diagnostic techniques have improved (or both), it is nevertheless the case that
as more children are diagnosed with autism there will inevitably be larger
numbers of young adults with diagnoses of autism in future. As we have seen in
the case of AB, not every person with autism accepts their diagnosis and this
appears to have potential to increase the persons vulnerability. It can also leave
social workers and service users feeling as if they are talking at cross-purposes;
if they cannot agree on the basis for the social workers involvement, then how
much more difficult must it be to agree on what goals should be achieved and
what support is required to achieve them? Partly, the issue of talking at cross-
purposes could be the result of having assumed different ethical positions (as
happened with AB). One positive way forward for social workers facing these
dilemmas might be to try and ascertain what ethical positions other individuals
are taking and thereby, gaining an improved understanding of their actions and
priorities.
In the case of AB, at the outset of the work, it seemed important to her
parents and the social worker that AB accept her diagnosis of autism. However,
it quickly became apparent that this approach was unlikely to help AB as much as
envisaged. At one point, AB did start to use the term autistic to describe herself
but in hindsight this change on its own altered very little in terms of ABs
vulnerability or her willingness to accept the type of support that the social
worker or her parents felt she needed. What did prove most effective was the
development of a good and trusting relationship between AB and her social
worker, giving her someone to talk to, to turn to for support and to trust. In
essence*and this does seem to be a lesson that bears repeating*the type of
social work that is likely to prove more successful with most service users,
irrespective of their needs or how they view themselves, is relationship building.
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