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Ethical Dilemmas in Social WorkPractice with Disabled People: YoungAdults with AutismDavid WilkinsPublished online: 27 Feb 2012.

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Ethical Dilemmas in Social Work Practicewith Disabled People: Young Adults withAutism

David Wilkins

This paper discusses ethical dilemmas related to social work practice with youngadults with autism. It does so via the use of a case study taken from real lifepractice. The different viewpoints and ethical frameworks of the young person,the young persons parents and the Local Authority (or the Local Authority socialworker) are considered and discussed. The competing rights of the 2006 UnitedNations Convention on the Rights of Persons with Disabilities (and the OptionalProtocol) 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 & Francishttp://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 atthe University of Kent (supervised by Prof. David Shemmings) and a manager in the London Borough ofEnfields disabled childrens social work team. Correspondence to: David Wilkins, 31 Cheviot Close,Enfield EN1 3UZ, UK. E-mail: david.wilkins@enfield.gov.uk

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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, socialinteraction 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 forpeople 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 thechildren knew which doll was which (Naming Question). Sally first placed amarble into her basket. Then she left the scene, and the marble was transferredby Anne and hidden in her box. Then, when Sally returned, the experimenterasked the critical Belief Question: Where will Sally look for her marble?. If thechildren point to the previous location of the marble, then they pass the BeliefQuestion by appreciating the dolls now false belief. If however, they point to themarbles current location, then they fail the question by not taking into accountthe dolls belief. These conclusions are warranted if two control questions areanswered correctly: Where is the marble really? (Reality Question); Wherewas the marble in the beginning? (Memory Question)

Most (neuro-typical1) people know the answer*Sally will look in the basket. Mostpeople 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 AutisticSociety 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 andfather 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 herbehaviour was becoming more difficult and dangerous to manage. AB would oftengo 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 returnedhome 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 shegradually withdrew from the college and spent more time out in the community.

ABs family was concerned about who she was spending time with and whethershe 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 meetthem.

A support agency was contacted to work with AB, to engage her in constructiveactivities 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 ABbecame 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 herfamily felt unable to have her return home.

A Triad of Viewpoints

Over the course of the work, three distinct viewpoints emerged*ABs, ABsparents and ABs social worker (or the Local Authority). Each party had a verydifferent 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 wastreated differently from her peers*she knew that other people her age could goout 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

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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 characterexperiences 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

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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 notsimply 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 suggestionthat 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 adebate 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 differencebetween 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 publicmoney 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).

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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 canoften 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 ofsocial 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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References

Anscombe, G. E. M. (1958) Modern Moral Philosophy, Journal of Philosophy, Vol. 33,pp. 119.

Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D. & Charman, T.(2006) Prevalence of Disorders of the Autism Spectrum in a Population Cohort ofChildren in South Thames: The Special Needs and Autism Project (SNAP), The Lancet,Vol. 368, no. 9531, pp. 2105.

Baron-Cohen, S., Leslie, A. & Frith, U. (1985) Does an Autistic Child Have a Theory ofMind?, Journal of Cognition, Vol. 21, pp. 3746.

Batten, A., Corbett, C., Rosenblatt, M., Withers, L. & Yuille, R. (2006) Autism andEducation: The Reality for Families Today, National Autistic Society, London.

Harris, S. (2011) The Moral Landscape, Bantam, London.Henderson, E. (2011) Grace Williams Says it Loud, Sceptre, London.Higgins, B. (2009) Good practice in supporting adults with autism: guidance for

commissioners and statutory services, National Autistic Society, London.Howlin, P. (1998) Practitioner Review: Psychological and Educational Treatment for

Autism, Journal of Child Psychology and Psychiatry, Vol. 39, pp. 30722.LaFollette, H. (2006) The Practice of Ethics, Blackwell, Oxford.Lekan, T. (2003) Making Morality: Pragmatist Reconstruction in Ethical Theory, Vanderbilt

University Press, Tennessee.Montana, P. J. & Charnov, B. H. (2008) Management, 4th edn, Barrons, Hauppauge,

New York.Pitt, V. (2010) Putting Sex on the Budget for the Disabled, Community Care, available

at: B http://www.communitycare.co.uk/Articles/2010/08/10/115069/service-users-personal-budgets-and-amsterdam.htm/ (accessed 18 July 2011).

Redman, S., Downie, M., Rennison, R. & Batten, A. (2009) Dont Write Me Off: Make theSystem Fair for People with Autism, National Autistic Society, London.

Rosenblatt, M. (2008) I Exist: The Message from Adults with Autism in England, NationalAutistic Society, London.

Scheffler, S. (ed.) (1988) Consequentialism and its Critics, Oxford University Press,Oxford.

Waller, N. (2005) Consider Ethics: Theory, Readings, and Contemporary Issues, PearsonLongman, New York.

Wilkins, D. (2010) Im Not Sure What I Want (and I Dont Know How to Get It): How doSocial Care Workers Perceive the Parental Relationships of Children with AutisticSpectrum Disorders?, Journal of Social Work Practice, Vol. 24, pp. 89101.

Wing, L. & Gould, J. (1978) Systematic Recording of Behaviours and Skills of Retarded andPsychotic Children, Journal Autism & Childhood Schizophrenia, Vol. 8, pp. 7997.

Zager, D. (1999) Autism: Identification, Education and Treatment, 2nd edn, LawrenceErlbaum Associates, Mahwah, NJ.

ETHICAL ISSUES IN PRACTICE 105

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