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David Preece, Residential Services for Children with Disabilities, Northamptonshire Social Care and. Health and John Greenwood Shipman Centre, Farmbrook ...
ORIGINAL ARTICLE

Consultation with children with autistic spectrum disorders about their experience of short-term residential care David Preece, Residential Services for Children with Disabilities, Northamptonshire Social Care and Health and John Greenwood Shipman Centre, Farmbrook Court, Billing Brook Road, Thorplands, Northampton NN3 8UW, UK

Summary

Consultation with children receiving services from social services departments is required by international and national legislation. Research has been undertaken examining the experience of children with disabilities receiving short-term care. However, none of these studies has focused on autistic spectrum disorders (ASDs). The present paper suggests that this condition's characteristics affect the ability of children with ASDs to participate in consultation. Case studies were undertaken investigating the impact of the characteristics of autism upon researchers' abilities to elicit children's opinions about their experience of short-term residential care. Factors which maximized the children's input and the accuracy of results are identi®ed. Keywords

Autism, consultation, short-term care

Introduction Consultation with all children who receive a service from social services departments is a legal requirement under the 1989 UK Children Act (DoH 1991). However, research into the implementation of this legislation (Morris 1998a,b) has indicated that little consultation is taking place with children with disabilities. Authors have recently focused on the values and principles underpinning consultation with children with disabilities (Beresford 1997; Ward 1997; Morris 1998a; Russell 1998). This literature tends to consider children with disabilities as a homogeneous group, ignoring the impact of speci®c disabilities such as autistic spectrum disorders (ASDs). Where empirical studies have been undertaken, consultation has focused on those with whom the process can be most easily carried out, i.e. those most eager to express their feelings and opinions (Minkes et al. 1994; Morris 1998c). Thus, research has involved teenagers and young adults more than

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younger children, and studied the experience of children with physical and/or sensory disabilities, and children with moderate learning disabilities, rather than their more severely disabled peers.

Short-term (respite) care Short-term or respite care has been identi®ed as a key support for the families of children with disabilities, including those with ASDs (Bristol & Schopler 1983). It has been shown to lower parental stress (Factor et al. 1990) and parents believe that it helps them continue caring for their child (Beresford 1994). However, while many studies on parents' opinions and experiences of short-term care have been carried out (Barson 1998; Brady 1998; Randall & Parker 1999), little research has focused on the child's perspective. Where studies have been undertaken, they have had a generic `disability' focus (Minkes et al. 1994; Anderson 1996; Marchant et al. 1999; Prewett 1999). Their limitations are

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Table 1 Research sample Name

Age (years)

Classroom

Ethnicity

Ahmed John Matthew

12 7 14

Specialist unit within a special school for children with severe learning difficulties Designated special provision within a mainstream lower school Specialist unit within a special school for children with moderate learning difficulties

Asian White European White European

acknowledged by the researchers, who accept that full responses were only obtainable from the most able respondents (Minkes et al. 1994) and that verbal statements were most easy to represent (Marchant et al. 1999). Therefore, the question is: How might consultation best be undertaken with children with ASDs? At this point, it is necessary to consider the effects which ASDs may have upon the consultation process.

Impact of autistic spectrum disorders Autism is a developmental disability affecting all aspects of the individual's life (Mesibov et al. 1997). Wing (1993) identi®ed a `triad of impairments' in autism, suggesting that, despite individual differences, people with ASDs display:  impaired reciprocal social interaction;  impaired communication (verbal and non-verbal); and  a restricted range of interests and activities. Autism is a pervasive developmental disorder with such diverse individual variations that the associated impairments are best described on a spectrum ranging from mild to severe: hence the use of the term `autistic spectrum disorders'. Swisher & Demetras (1985) and Gar®n & Lord (1986) identi®ed characteristic de®cits in ASDs which impact upon the individual's abilities to participate in social and communicative processes such as consultation:  They have little intrinsic motivation to communicate or interact.  They have dif®culties comprehending abstract concepts such as emotion, space and time.  Their understanding of language is affected by (1) the amount of language used, (2) the overall stimulation level of the environment and (3) the context.  They use language differently both from normally developing children and from children with learning disabilities or speci®c language impairments, and their communicative abilities and comprehension skills may be overestimated. Current research on consultation has not considered these speci®c impairments of ASDs and two key questions remain unanswered:  How do the characteristics of autism impact on service providers' abilities to elicit the opinions of children with ASDs?

 Can meaningful consultation be undertaken with these children about the services they use, and if so, how?

Subjects and methods Consultation was carried out with three children, Ahmed, John and Matthew, who attended a six-bed, short-term care unit for children with ASDs (see Table 1). The TEACCH approach (Schopler et al. 1995) had been adopted across all agencies in the present author's authority (Preece et al. 2000), and was consistently used in the children's classrooms and the residential unit. Beresford (1997) and Russell (1998) suggested that adults involved in consultation with children with disabilities should be known, familiar and trusted. However, to prevent children feeling pressured into giving positive answers, Marchant et al. (1999) and Minkes et al. (1994) advised that interviews should neither be carried out by adults directly involved with the service, nor with parents present. Minkes et al. (1994) suggested that teachers are people who know the children well, but are separate from short-term care services. Therefore, in the present study class teachers carried out the direct consultation with the children.

Consultation process Minkes et al. (1994) focused on four broad areas of investigation:  the child's level of consultation and involvement;  activities available to them;  the quality of the care that they receive; and  their enjoyment of short-term care. To test the relevance of these areas for children with ASDs, these same areas are used in the present study. Two children (i.e. John and Matthew) had some speech, but also used other communication resources, including photographs, picture symbols and objects of reference. Their teachers carried out the structured consultation process, which was individually designed for each child, in the classroom. Ahmed had no speech and found interaction very stressful. His communication was extremely restricted, mostly comprising motoric gestures. Middleton (1999) and Morris (1998c) suggested that, for practical and ethical reasons, such children are most appropriately included in research by `being with them'. Therefore, Ahmed's teacher

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Consultation with children with ASDs

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Table 2 Summary of the implementation of the research Stage

Time scale

Review of the literature on consultation with children with disabilities and impact of autistic spectrum disorder Contact with schools and parents to identify sample group; access and consent process with schools and parents Pre-consultation interviews with parents, teachers and residential staff; direct observation of children in communicative situations Development of consultation tools and communication resources Structured consultation, administered by teacher, observed by researcher where appropriate; data examined in conjunction with other sources (e.g. care staff and paperwork); process analysed with teacher and revised to clarify meaning where necessary Revised consultation process administered by teacher Collation of information relating to the perceived effectiveness of the consultation process

July±September 2000

observed him during his stays at the unit. A summary of the research process is shown in Table 2.

Consent Consent was obtained from parents and agencies. Ahmed could not give informed consent because of his severe learning disabilities, and therefore, the research was indirect, i.e. being with and observing him. The other children's willingness to participate was ascertained before each session by the teacher. Consent was viewed as a continuous process (Marchant et al. 1999), not a one-off agreement. This gave the children more in¯uence because it was accepted that sessions would stop when the children wished and/or if it was clear the process was causing distress.

Data collection To maximize the validity of the data and the interpretations drawn, a range of data collection techniques were utilized. Pre-consultation semistructured interviews with parents and teachers The present researcher used an interview schedule comprising key questions (e.g. concerning the children's communication systems) and topic headings (e.g. `Characteristics of autism' and `Behaviours associated with attending the shortterm care unit'). The researcher also met with the teachers before each consultation session to agree on the session's format, and ensure the teacher was comfortable with any communication tools or prompts. Field notes of the researcher's observations Before the consultation process began, the researcher observed the children in classroom and short-term care settings.

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July±September 2000 September 2000 September±October 2000 October±November 2000

November±December 2000 December 2000±January 2001

Records of results of structured `interviews' of children by teachers In two cases, the children participated in structured `interviews'. In one, where the researcher was not present, the teacher made contemporaneous notes. In the other, tape recording and contemporaneous notes by the researcher recorded the `interviews'. Field notes of the teacher's observations made in the residential setting Ahmed's teacher contemporaneously recorded her observations under the headings of: `Consultation and involvement', `Activities', `Quality of care' and `Enjoyment'. Post-consultation semistructured interviews with teachers These interviews allowed:  discussion of notes to ensure accuracy;  identi®cation and analysis of problems encountered; and  agreement on revisions to the process. Post-consultation semistructured interviews with residential staff These enabled the comparison of information gathered via consultation with the observations of residential staff, illustrating points of congruence and difference. Reading documentary evidence: daily notes and children's files Residential staff recorded the activities undertaken by the children, their moods and disposition, and other information about their stays. The ®les also contained background information about the children. These sources of qualitative information were tested against each other, carrying out `triangulation' to obtain corroboration or refutation.

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Results Data was collected in all three case studies regarding:  the consultation process and its effectiveness;  the child's ability to participate in the process; and  the child's experience of short-term care. This was examined to assess the impacts of the `triad of impairments' (Wing 1993): impairments in social interaction; impairments in communication; and the need for routine and resistance to change. Findings common to the three case studies are discussed below.

Impairments in social interaction Aloofness Howlin (1998) described children with ASDs as socially isolated, while Mesibov (1986) stated that they have a pervasive lack of responsiveness to others. This was re¯ected in the present research, where all three children exhibited aloofness. Ahmed did not participate other than as the subject of observation. John and Matthew's preferred pursuits were solitary (e.g. listening to music and watching videos), and they had very limited interaction with staff or peers, few of whom they could name. There was no evidence of any of the children playing with others (except when staff directed activities), and they showed no understanding of the concept of `friends'. Social anxiety All three children were anxious in interactive situations, making it dif®cult to assess the validity of their answers. Matthew's teacher felt that he wanted to `say the right thing', illustrating a tendency to acquiescence also noted in consultation with adults with learning disabilities (Rodgers 1999). John's often factually inaccurate answers (as in naming people) may have been affected by a wish to end the session. Triangulation helped establish accuracy, but did nothing to throw light on the reasons why certain answers were given. Problems concerning emotions Powell & Jordan (1997) wrote that: `While it is clear that children with autism experience emotions it is less clear that they can re¯ect on them or use emotion to evaluate situations and imbue them with personal meaning.' (p. 9) This affects the ability of others to elicit their likes and dislikes, and comprehend their experiences. The children were best able to describe preferences with regard to concrete subjects, such as food. Questions concerning liking and disliking people, or friends, were more dif®cult. Throughout the study, the clearest data concerning their emotional state

came not from the children themselves, but from the teachers who knew them.

Impairments in communication Limited and idiosyncratic use of language Impaired use of language affected the consultation process with all three children, most obviously in the case of Ahmed, who was non-verbal. Capps et al. (1998) have shown that verbal children with ASDs have dif®culties in conversing and this is borne out in the data. All of Matthew's speech, and most of John's, was elicited, and comprised only single words or short phrases; both boys were prompt-dependent throughout. Where answers were obtained, it remained dif®cult to ensure their validity. Both Matthew and John (naming staff and children's photographs) gave answers which ®tted the context, but which were inaccurate. This may have resulted from anxiety or a desire to end the questioning. Happe (1994) and Hobson (1993) have described the problems which people with ASDs have in understanding others' communication. Such dif®culties may lead to bizarre and idiosyncratic language use (Groden et al. 1994), as in this passage of conversation between John and his teacher: Teacher: It was just a present, was it? John: Mm. Teacher: and what was inside the paper, when you took the paper off? John: That's my cousin. Teacher: Your cousin? John: Mm. Matthew and John found open questions (e.g. `What things do you do at X?') dif®cult, coping better with simple, closed questions. Research has suggested that this may be characteristic of children with autism (Green et al. 1995). Phenomenon of recency Rodgers (1999) raised concerns about the validity of research with people with learning disabilities because of the phenomenon of recency, where the person always chooses the last in any series of options. Lincoln et al. (1995) have shown that people with ASDs demonstrate a signi®cant recency effect; this may be indicative of echolalia, which in an immediate or delayed form affects 85% of the population with ASDs (Mesibov et al. 1997). This factor was clearly illustrated by Matthew, who consistently chose the second option to either/or questions. Distress at communicating All three children showed some degree of distress, Ahmed ®nding communication so dif®cult that he engaged only motorically to get his needs met, or by hitting out.

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Need for routine and resistance to change Dislike of change It has been well-recorded that children with ASDs are resistant to change (Groden et al. 1994; Howlin 1998; Jordan 1999). This raises fundamental questions regarding consultation about short-term care. If children with ASDs do not like change, to what extent can we expect them to `like' shortterm care? This was clearly illustrated by Ahmed, who became distressed each time he was told that he would be going to the residential unit. Furthermore, when the children reported that they `liked' something, did this indicate a real preference or simply mean that it had become part of their familiar routine? Poor memory That people with ASDs have a poor personal event memory is shown both by research (Lincoln et al. 1995; Capps et al. 1998) and by personal accounts (Williams & Vaish 1999). Flack et al. (1996) noted that children with ASDs `are likely to have dif®culty in saying what they did at school when asked by the parent in the evening and an equal dif®culty saying what they did the evening before or even what they did just before coming to school' (p. 89). John and Matthew recalled little of what they had done at the unit, with Matthew generally reporting the most recent activity. Making peanut butter muf®ns which he related as his favourite activity was the last thing he did there before leaving for school. John did not recall going to the cinema, even though he had gone for the ®rst time only two nights previously.

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Importance of consistency Previous research (Sargent 1995; Anderson 1996) has indicated that children with ASDs dislike short-term care services, sometimes exhibiting behaviours which lead to their exclusion from them. The present study suggests that, in the case of these three children, the consistency of approach provided across environments enabled them to have a more positive experience of short-term care.

Variables affecting quality of service Staff-to-child ratios, training, and individual workers' skills and personal attributes have been shown to be vital variables affecting service quality (Allison 1999; Peeters & Jordan 1999). The data obtained by teacher observation of Ahmed's experience illustrated that the staff's knowledge of him, staf®ng levels and the demands of other children were critical to his experience of the service.

Limitations True generalizations cannot be drawn because of the limited sample of cases and the diverse nature of ASDs. Indeed, given the condition's individual nature, it might be dif®cult to make valid generalizations, even with a much larger sample. Nevertheless, it is suggested that the ®ndings may have value, permitting statements of `fuzzy generalization' (Bassey 1999) to be formulated. It has been proposed (Grif®ths 1998; Bassey 1999) that the ®ndings of a study such as the present one might have wider relevance, whilst acknowledging its limitations. Such ®ndings will show `that something has happened in one place and that it may happen elsewhere' (Bassey 1999, p. 52).

Need for concreteness

Common issues

People with ASDs have limited powers of abstraction (Peeters & Gillberg 1999), and the bene®ts of using visual cues to improve understanding are well documented (Mesibov et al. 1994; Howlin 1998; Jordan 1999). Within this process, the use of photographs helped Matthew and John to share information with the teacher. The manipulation of schedule cards was also essential in enabling John to indicate his bedtime routine.

From the analysis of the data collected in the consultation sessions and from documentary sources, a core of common issues across the case studies can be drawn:  The characteristic impairments of ASDs impacted upon all three children's abilities to participate in the consultation process.  The children were calmer and more secure with known adults.  Their interactions were limited, both with peers and adults, and this affected both their experience of short-term care and the consultation process.  Their use of speech was limited and idiosyncratic.  They found open questions and choice dif®cult.  Visually mediated methods strengthened communication.  The children's social anxiety shortened the consultation sessions. The present results show how the characteristics of autism impact upon the consultation process, limiting the validity

Discussion Such was the impact of ASDs upon the consultation process. So what was learned of the children's experience of shortterm care? The size of the sample group was too small to draw conclusions about the overall quality of the service provided by the unit. Nevertheless, the present study does provide an insight into the children's experience and two issues are highlighted by the results.

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and accuracy attributable to the results. Nevertheless, a number of factors helped to optimize both the children's input and the accuracy of the data.

Visual support The use of photographs and visual cues improved the children's understanding and increased their ability to participate. However, while making communication easier, this limited the consultation to the range of photographs and symbols offered.

Time scales Carrying out the consultations shortly after attending the residential unit, and supporting the process with visual material, seemed helpful in minimizing the effects of the poor memory of children with ASDs.

Prior knowledge of the children It was important that those carrying out the consultations had prior knowledge of the children. This was vital in terms of:  putting them at ease and minimizing social discomfort;  interpreting their affect and disposition; and  understanding their communication. Even so, a potential for errors remained, as when John named the children who had been in the unit with him: not knowing the children, the teacher did not realize that the names he gave were incorrect.

Need for triangulation The information obtained directly from the children was partial, and on occasions, factually incorrect. This did not mean that consultation with these children was worthless because: `Being able to hear the direct opinion of a person with learning dif®culties, unin¯uenced by the presence of a carer, is very valuable and it is worth missing some information to attain it. It seems important not to completely dismiss a person's ability to take part in research on the basis of some invalid answers.' (Rodgers 1999, p. 427) However, this highlights the importance of triangulation and using multiple methods of data collection.

Consultation must address their experience Jordan & Powell (1995) referred to the `tunnel attention' of children with ASDs, which may well have a major impact on their experience of all environments, including short-term care. The present results suggest that some of the questions

devised by Minkes et al. (1994) to obtain the views of children with learning disabilities about short-term care services lack relevance. Questions about playmates and friends proved particularly problematic, as did questions about similarities and differences between the short-term unit and their own homes.

Individualization The three children had different cognitive, social and communicative abilities, and as Jarrold et al. (1997) stated, it was necessary to assess each child's strengths and weaknesses to individualize the consultation process for them. No single method was appropriate for all the children. Moreover, the use of a range of consultation methods (i.e. tasks and jigs, photographs, and conversation) with the same child was helpful in addressing different facets of the investigation.

Conclusions The European Parliament's Declaration on the Rights of People with Autism, adopted in 1996, acknowledges  `the right of people with autism . . . to be involved in all decisions affecting their future: the wishes of the individual must be, as far as possible, ascertained and respected'; and  `the right of people with autism to participate, as far as possible, in the development and management of services provided for their well being' (cited in Jordan 1999). The present research supports these statements, asserting that meaningful consultation with children with ASDs is vital if the short-term care services used by them are to be effective. However, consultation cannot be effective unless suf®cient consideration is given to the impact of autism. Generic approaches may be inappropriate because of the characteristic impairments in the areas of social understanding and communication, and the children's restricted interests and resistance to change. Consulting with such children is challenging and the process is fraught with dif®culties. Nevertheless, it remains imperative that strenuous and meaningful efforts to do so are made. As Minkes et al. (1994) argued: `The children who cannot understand the questions or respond to them as they currently stand are perhaps those most in need of the protection of their interests which consultation should offer.' (p. 57)

Acknowledgements Thanks are given to: the staff at 82 Northampton Road, Wellingborough (the short-term care unit); Angela Jackson, Glen Mallard and Ann Payne (the teachers who carried out the direct consultation process); and Ahmed, Matthew and John, and their families.

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