Peer, Sibling, and Self Perspectives on Disability or Difference (Including ASD)

 

This review includes a summary of findings concerned with children’s understanding of psychological problems among pre-school or school-age peers; the development of interaction between children diagnosed with ASD and their siblings; and the opinions and experiences of pupils with ASD attending mainstream secondary schools (which suggest some discrepancy between the ideals of inclusion and the reality).

 

M.J.Connor                                                                                            February 2008

 

 

Children’s Understanding of Peers’ Psychological Problems

 

In their introduction to a literature review concerning children’s psychological problems as perceived by their peers, Hennessy et al (2007) describe the general recognition that satisfactory peer relationships are a significant contributor to children’s socialisation; and that those children who experience social or emotional problems (perhaps reflected in negative internalising or externalising behaviours) are more likely than others to experience rejection from peer groupings.

 

In other words, children who experience some psychological problem face a double disadvantage ... the direct effects of the problem and inhibited social interactions, perhaps even exclusion ... and the implication is that the two issues interact in a mutually exacerbating manner.

 

These authors’ review of relevant findings has shown that the emphasis has been upon the social functioning and social cognitions of this particular sub-group of children; but some research has been focused upon the ways in which children regard their peers who manifest psychological problems, and why there is a common tendency to act negatively towards them.

 

Converging evidence (such as that of Hay et al 2004) indicates that the majority of children are at least implicitly aware of problems experienced by other children, and that they may well respond by excluding these children.

A range of studies cited highlights how children can differentiate deviant from normal behaviour from pre-school years on, and that responses show age-related variation. 

This is illustrated by research completed and replicated by Younger and colleagues

(eg Younger and Piccinin 1989) who reported that, from the age of 7 years, children recognise and respond in particular ways to aggressive behaviour observed in peers, but any such “ social schema ” for withdrawn behaviour does not develop until significantly later (towards the end of childhood or in early adolescence).

 

Developmental changes have also been reported in children’s interpretations of other forms of maladaptive behaviour so that, as children get older, they are more likely to regard school phobia, or anti-social and anxious and depressed behaviours, as deviant. 

(However, this is not a consistent or “linear” trend given that, with the increasing age of the sample, deviance is not necessarily attributed to all behaviours of an anti-social type, especially when the sample making the attributions includes teenagers !)

 

Hennessy et al are able also to cite evidence that, from the age of around 7 or 8 years, children have their own beliefs about the source of psychological problems. 

In respect of withdrawn or self-punitive types of behaviour, children in the mid-primary school age-group regard some internal factor, such as simply being made that way, as the primary cause; and atypical behaviour among peers may be seen by young children as a attempt to gain acceptance.

 

With age, there is less of a tendency to make internal attributions for problem behaviour; instead, reference is more likely to be made to some factor related to the school or to the home and the actions of parents.

 

Again, this is not a wholly consistent pattern, and reference is made to the findings of Boxer and Tisak (2003) who showed that, by later adolescence, the emphasis in explanations of aggressive behaviour is related to the internal characteristics of the perpetrator. 

Other evidence cited has shown that older children are more likely than younger children to explain negative behaviours in terms of emotional or cognitive problems

(ie internal attributions); and that a pattern may be discerned in that different explanations are offered for different behaviours ... for example, social withdrawal is more likely to be attributed to some internal factor, while acting-out behaviour is more likely to be explained in terms of family problems. 

 

It is reiterated that the significance of gaining an insight into children’s understanding of the psychological problems of others is based upon the perceived association between such understanding and their attitudes and behaviour. 

 

Two theories exist by which to explain this relationship.

 

The first is Attribution Theory (Weiner 1993) which holds that the nature of explanations about responsibility is a function of the feelings that one has towards the person whose behaviour is problematic.  The chain of events may take the form of some aggressive behaviour, a judgement from the observer that this was a matter of his or her direct and personal responsibility for acting in this way, a resulting reaction of anger in the observer leading to a rejection of the other person.

Meanwhile, a child who displays signs of depression and who is known to have experienced some stressful circumstances is more likely to be judged as likeable than a child who displays much the same behaviour but who has not experienced the life stress. 

The more directly responsible for problem behaviour a child is judged to be, the more the negative feelings will be directed towards that child.

 

The second is “ Psychological Essentialism ” (Giles 2003) which is a matter of the extent to which behaviour is perceived as reflecting an enduring characteristic of the person.

For example, children who believe that the aggression shown by another child is a stable and unchanging behavioural style will hold fewer positive and pro-social perceptions of that child.  It is recognised, however, that this kind of essentialistic reasoning is more common among younger children, and it can be influenced by the particular circumstances (such as the nature and seriousness of the actual behaviour) and by the perceived intentions (so that a deliberate rather than an unintentional act is typically attributable to a stable trait).

 

In their summary of the evidence surveyed, Hennessy et al note that the studies have been biased towards problem behaviour observed in boys, thus limiting any insight into the way children perceive and respond to psychological problems experienced by girls.

It is also recognised that many of the studies involve some “vignette” and the request upon participants to describe how they would respond to given behaviour in some hypothetical child, and it is possible that children’s responses to this artificial circumstance may not be a true indicator of likely responses to a real event.

 

In any event, the research associated either with Attribution Theory or with Essentialism offers clear indications that children’s beliefs about the nature and source of psychological problems are related to their attitudes and their reactions towards the individuals concerned. 

The question raised is whether or not providing some information and insight into the nature of psychological and mental health problems will improve the attitudes and behaviours of children and adolescents towards their peers who are experiencing such problems. 

(Evidence is limited in this regard, but what findings do exist, suggest that there would be benefits from this kind of intervention in terms of more positive attitudes.)

 

Sibling Interaction and Autism

 

A significant and defining characteristic of autism is social impairment, and Knott et al (2007) describe how social weaknesses and inhibited interactions have been explored in terms of limited theory of mind or a lack of central coherence ... ie failing to perceive the feelings or points of view of other people, and failing to gain some overview or to coordinate and make sense of information coming from different sources. 

However, they refer to increasing awareness that children’s social understanding is a function of access to a range of social experiences and contexts, including the stimuli provided by, and interactions with, siblings. 

 

There is evidence (such as that of Tomasello et al 2005) to show that shared intentionality and the ability to collaborate with others in various activities are important components of a growing theory of mind, with the implication that social interaction deficits in autism need to be explored in terms not simply of the nature of the impairment but also of the processes by which children do learn social skills and practise them in day to day contexts. 

A purely cognitive theory ... a deficit approach ... does not indicate how these abilities develop (or fail to develop); and does not give appropriate weight to experiential factors such as the opportunities for young children with autism to interact with older and typically-developing siblings and the impact of such experience upon the acquisition of social-cognitive skills.

 

Knott et al cite two further limitations with the style or emphasis in much of the existing research.

 

Firstly, the focus of studies tends to be upon broad outcome measures, such as the number of friends to which a child is linked, and there is no exploration of the processes by which the friendships have come about.  Given that the development of children with autism is ongoing and significant strides can be achieved, the practical questions concern where and why development is inhibited (perhaps a matter of limited joint attention, and a reduced sharing of play, linked to decreased empathic behaviours) and the optimal nature of the support that one might provide by which to foster progress.

 

Secondly, much of the evidence is based upon structured (contrived) tasks and situations rather than upon observations of the children in a more natural context.

For example, the analysis of imitative behaviour in a laboratory-type setting may, as in the study of Beadle-Brown and Whiten (2004), may find that elicited imitation does not discriminate between children with ASD and ability-matched controls; while further observations of children in natural settings indicates that children with ASD show significantly less spontaneous imitation than typically-developing controls. 

 

(The present writer – MJC – would comment that this kind of finding reinforces other work to the effect that a child with autism is not necessarily lacking in the basic capacity to perform certain social “tasks”, such as discriminating different emotions from facial expressions, but such capacities tend not to be demonstrated automatically or spontaneously.  They may, however, be observed when the circumstances have been modified to reduce the amount of stimulation thus to focus attention upon the salient cues and to limit the decisions to be made. 

As noted above, the issue may well concern how to generalise any such capacities into more natural, and more complex and ever-changing, settings.)

 

The study by Knott et al themselves concerned the changes in the extent and nature of reciprocal interaction among children with autism and siblings, and the pattern of spontaneous initiations of an interaction.

Their review of relevant findings indicated that, for typically developing children, the sibling relationship is the source of consistent interactions and a basis for the development of a range of skills for both the younger and older child. The roles may be likened to those of learner and teacher and, at least in the early stages, tend to be asymmetrical in that the older child commonly takes the lead and the younger child responds to, or imitates, that lead.

Over time, the amount of interaction increases, but the asymmetric relationship is maintained through early and middle childhood. However, after this time, there is a gradual reduction in the extent of imitation in the sibling interactions, particularly in mixed-gender pairs of siblings. 

 

The purpose of the present study was to examine sibling interactions in the case of children with autism.  Reference is made to existing evidence that the asymmetry is clear with the developmentally disabled child taking on the role of learner (or quasi- younger child) irrespective of actual birth order; and the typically developing sibling provides the support by which to allow reciprocal interactions.

One specific question concerned whether or not the sibling relationship, where a child with autism is involved, becomes ever more asymmetrical over time.

 

The participants included six pairs of siblings where one was autistic and the other typically developing, and ten pairs where the child with a developmental disability had been identified with Down syndrome. 

The children with autism were all boys (mean age of 5·5) and four of the siblings were girls and two were boys.  The five boys and five girls who comprised the Down syndrome group (mean age 7·8) were paired with four girls and six boys.

 

The behaviours to be recorded included twelve pro-social actions (such as giving or sharing an object, helping, requesting, praising, etc), and ten “agonistic” (contrary) actions (such as physical aggression, threats, competitive statements, teasing, etc).

The nature of responses to initiations was also noted, whether positive or neutral or agonistic.

Sibling pairs were observed at home on two occasions, twelve months apart, with the mothers asked to continue normal routines as far as possible, and not to initiate interactions with the children (albeit responding if approached as they normally would).  The children were told that the visitor had come to talk to their mother, and that they could maintain their usual play or activities.

 

The results were consistent with existing data in demonstrating changes over time in the amount of both pro-social and agonistic initiations and responses.

The developmentally disabled children were shown to be making more frequent positive responses at the follow-up observation, while their siblings’ responses to pro-social initiations were maintained at a similar level. 

 

It was held to be significant that both sets of sibling pairs followed typical patterns by increasing their range of initiations over time.

However, further analysis of the actual behaviours indicated that the patterns of interaction tended to be “ stage-managed ” by the typically developing siblings in that they had markedly increased their rate of initiations by the time of the follow up observation. The enduring nature of the social impairment in autism was described as being highlighted in the interaction patterns in this natural setting.

 

On the other hand, it was recognised that the interactions of the children with autism had developed to at least some extent.  For example, there was a clear increase in the proportion of positive responses to the pro-social initiations by the typically developing siblings, which themselves had doubled in number, so that there was effectively a 4-fold increase in the positive responses by the autistic children

 

(There was an increase in the proportion of positive responses on the part of the children with Down syndrome, but not to the same extent ... albeit allowing for the fact that their baseline level of positive responding was greater than that of the children with autism.)

 

In other words, there was seen to be an increase in the role asymmetry as the relative gap in developmental level increases between the siblings; and the typically developing siblings increasingly provide support to enable interactions to continue. 

 

It was noted that the children with autism showed spontaneous imitation less frequently, on average, than those with Down syndrome.  It was the typically developing sibling who markedly increased the degree of imitation ... and this appeared to scaffold the amount of increased imitation that was observed in the children with autism by the time of the follow up. 

Meanwhile, it was reported that the children in these pairs appeared to show an increase in their interest in, and social engagement with, each other over time.

 

The authors summarised their conclusions by referring to the robust nature of sibling interaction even with children with autism whose manner and social performance would limit their capacities for reciprocal play. 

The children with autism, albeit participating in interactions which showed increasing asymmetry over time, did demonstrate a level of willingness and ability to interact with their siblings which is rarely observed in their relationships with other children.   With siblings, there is a social development similar to that observed in typically developing children, even if it occurs much more slowly; and the role reciprocity unique to the sibling relationship appears to enhance the collaborative performance.

 

The implication drawn reflects the conclusions set out by Rogers (2000) that there is a clear potential for tapping these existing patterns of sibling interaction to promote the development of social skills in children with autism, and interventions would usefully be set within such interactions thus to take advantage of the already existing and natural pattern of exchanges.

 

(One might also suggest that the success of such an intervention would also be linked to the use of a setting which is familiar, and reassuringly consistent, and involving a relatively non-complex and largely stable exposure to stimuli, whereby changes to the task demand or expectation, such as increased modelling of imitation, with associated reinforcement, are more readily identifiable and manageable.)

 

Experiences of Pupils with ASD in Mainstream Secondary Education

 

In introducing their report on the expressed views of a sample of pupils with ASD, Humphrey and Lewis (2008) cite an estimated figure of nearly 100,000 children and young people with the difficulties in social interaction, communication, and imagination, coupled with average cognitive and linguistic skills, that are characteristic of Asperger syndrome or high functioning autism. 

 

The refer also to the growing routine of mainstream educational provision based upon the philosophy of inclusion together with the growing realisation, as set out in the notes of Connor (1999), that grouping the children with ASD within special classes or schools may not always be in their best interests.

However, questions are also raised whether the policy of inclusion is more about the abstract issue of “rights” than about what is most appropriate educationally, and how good practice is to be defined for different groups of learners.

 

In their review of a somewhat limited research base, the authors note how converging survey data suggest that school can be a stressful setting for many pupils with Asperger syndrome, and that social isolation or bullying may be common experiences.

Further, while teachers may well be committed to the principle of inclusive education, they still feel some anxiety over the perceived inadequacies of training or support by which to provide for these pupils.

The present writer is cited again (Connor 2000) as noting from his survey of pupil perspectives that the style and organisation of secondary schooling, including the lengthy and unstructured lunch-time periods, may contribute to the frustrations and sense of apartness among pupils with ASD.

 

The completion of this present survey by Humphrey and Lewis was stimulated by the view that there needs to be ongoing explorations of the real-life experiences of samples of pupils with ASD and an appreciation of their perspectives, with the additional stimulus of governmental policy concerning the desirability of tapping the knowledge of the young people themselves about how to make the best use of educational provisions. 

 

Their study involved the gathering of information from a sample of 20 pupils (age range 11-17) with Asperger syndrome, drawn from 4 mainstream secondary schools, using interviews, and pupil diaries of day to day experiences over a period of one month, to explore their views and their perceptions of events, while identifying practices which either fostered or inhibited their learning and social participation. 

The pupils themselves were involved from the outset in helping to finalise final interview schedules by determining the salience of draft questions, and they also examined the concluding summary to ensure its appropriateness and to add to the interpretations made.

 

The first theme was that of the experiences of the pupils following the diagnosis of Asperger syndrome and their understanding of, or reaction to, this label.  The meaning attached to the label was thought likely to influence how they made sense of educational and other circumstances.

It was found that pupils could be differentiated in terms of those who had negative perceptions of the diagnosis and their separateness from other pupils, and those who more readily accepted the fact of Asperger syndrome.

 

The pupils who took a more negative view tended to refer to their being different or not normal, with the likely implication that this reaction is a reflection of the feedback received from other people.  For example, one pupil expressed frustration that his teachers had been told about the syndrome and held that this led to his being treated as special or retarded ... illustrating the unhelpful aspect of labels if they lead to some particular perceptions/attitudes on the part of significant others which, in turn, impact upon the self image of the individual.

 

(The authors argue that the need is to avoid “pathologizing” Asperger syndrome and to refer to a difference rather than to a disorder given the risk lest a label may underlie the attribution to an individual of all the maladaptive behaviours and symptoms that could be associated with that label with a consequent loss of individuality and a lowering of expectations.

On the other hand, it is recognised that the use of specific diagnostic categories may be a necessary step towards the allocation of resources and support .

Some shift appears necessary in terms of avoiding negative consequences from the use of deficit terminology such as disorder or impairment, and to focus instead upon the observable profile of strengths and weaknesses with a view to targeting support most effectively.)

 

This pattern is in contrast to what was expressed by other pupils ... namely, an acceptance of Asperger syndrome as part of their identity ... but it was emphasised that the self-perceptions and expressed attitudes of this sample of pupil, whether negative or more sanguine, appeared to be significantly influenced by the reactions of peers.

This latter point was explored further, with the finding that there were markedly divergent experiences in the way in which peers responded to Asperger differences.  In one case, the special interest of a pupil was a source of fascination to peers so that his confidence was increased; in another case, the special interest was a source of difficulty in that peers could not see why the interest was maintained.

 

The authors highlighted the problems that could arise as a result of the social naivety shown by many of their sample of pupils.  Exploitation by other pupils was frequent given that pupils with Asperger syndrome are keen to be accepted as friends but struggle to understand the complex and subtle rules about social interaction so that they can become targets for ridicule. 

 

(The suggestion from the authors is for both supporting the targeted pupils by providing guidance – via Social Stories, for example – to develop greater social awareness and skills while also using their special interests or skills proactively, and working with peer groups – perhaps through a variant of Circles of Friends – to increase their understanding of the nature of Asperger syndrome and to reduce the misinformation or stereotyping.) 

 

In other words, relationships with peers could be either a potential barrier or a facilitator in respect of successful inclusion.  Bullying or teasing at various levels of severity, from name-calling to physical aggression, were common.
Evidence exists (eg Chan 2006) that many or most pupils are the subject of some incidents of teasing or bullying, but what was significant about the abuse reported by this current sample via the diary records was its regularity.

 

This may be a function of the difficulties in communication and interaction among pupils with Asperger syndrome, and their social naivety, which may be complicated by fragile resilience, such that the very thought of school can arouse anxieties and that, in the school setting, social isolation is a likely outcome (and perhaps more serious mental health needs in the longer term). 

 

In some cases, however, the bullying or teasing, and the risk of social isolation were counteracted by support and acceptance as friends on the part of peers willing to stick up for them.  There is seen to be critical significance in the existence of such support for self confidence and self image, and, again, the implication for education and mental health staff is for seeking to evoke peer understanding and acceptance ... especially given the evidence (Bauminger and Kasari 2000) that relationships with peers may well be a greater influence upon the outcome of inclusion than relationships with teachers.

 

The authors go on to cite converging evidence that children and young people with Asperger syndrome experience higher levels of anxiety than either typically developing individuals or clinical controls (such as those displaying significant behavioural difficulties).  The anxiety is commonly thought to reflect limitations in social reasoning, and, in some cases, specific learning difficulties.

The current findings are said to offer some support for this kind of view, and the authors emphasise that the school environment may be a particular source of anxiety in that, while some pupils found the order and routine of school a source of security, others found the reverse and struggled to find any semblance of predictability in the busy and complex environment of the secondary school; and for some, the stress was overwhelming.

 

(The implication was for making basic adaptations to the setting such as providing pupils with Asperger syndrome with their own centre to act as a refuge during those non-classroom parts of the school likely to be particularly “lively”; or identifying sets of quieter and amenable pupils with whom to place the targeted pupils.)

 

The nature and consistency of the support offered was also seen as critical for meaningful inclusion and for the pupils’ feelings about difference. 

Some members of the sample described the support as appropriate in reducing some of their anxieties about school; but others were concerned lest the visibility of additional support caused them to stand out all the more as different from peers. 

For example, having a member of the support staff accompany them to lessons was seen as getting in the way of blending into the class.  This situation was reported to be exacerbated by difficulty among some teachers in making the appropriate adjustments to their lessons or in differentiating their expectations to match the style of the pupils with Asperger syndrome, with the result that the support staff prepared the work for these pupils who had correspondingly little or no formal or informal interaction with the teachers.

 

(One implication is for adequate initial and ongoing training for teachers about the nature of autism and ASD [ including Asperger syndrome ] thus to ensure competence and confidence in respect of providing for these pupils; but there remains a practical issue concerning the need for support in order to maximise access to the curriculum

and to reduce exposure to bullying, albeit with the concern lest the means of providing the support marks the pupils as different and shifts the basic responsibility away from the subject teachers.  One compromise is to have the support staff conspicuously attached to the whole class and to be seen as facilitating the work of any of the pupils, albeit discretely maintaining a focus upon the working of the pupil[s] with Asperger syndrome.)

 

The final theme concerned the ways in which the pupils in this sample sought to assimilate themselves into the school setting.

It was reported that contradictory or confused messages received could counter their attempts to fit in to the routines and atmosphere; and success in this regard was seen as a matter of the level of normality/abnormality of their behaviours perceived by others.  The findings suggest that this led to a belief among this group of pupils that they had to make adaptations to their style and behaviour.

 

The familiar dilemma arises in respect of the extent to which the diagnosis of Asperger syndrome is to be shared with the school staff and peers. 

To some of the pupils in question any level of disclosure was regarded as a barrier to their being seen as an ordinary member of the school.  However, the authors cited examples where sensitive sharing of information with peers enhanced relationships

(and they referred to work reported in the research  literature – such as that of Gus 2000 – which showed that disclosure to peers of the diagnosis, and discussion of the implications and means of supporting the pupils, can foster acceptance).

 

The belief is that ignorance often underlies intolerance so that the more the other pupils learn about the nature of Asperger syndrome, the more likely is an empathic and accepting atmosphere.

As argued by Dyson (2001), the more that educators emphasise differences between pupils and how they can be separated, the more they overlook what they have in common ... perhaps an issue that can be resolved by greater collaboration between mainstream and specialist schools (as advocated by Norwich and Lewis 2005) by which to increase awareness of needs that are common to all pupils, while also recognising needs that are specific to a group, and those which are specific to a given pupil. 

The implication is for individual profiling and the targeting of support and intervention (as opposed to making assumptions based upon the general diagnostic label).

 

In their conclusion, Humphrey and Lewis refer to a number of barriers that can prevent the pupils with Asperger syndrome from taking full advantage of their education along with instances of adaptations of classroom demands and organisation that provide a more positive experience of schooling. 

It is also acknowledged that pupil opinions and perspectives are important, but only part of the whole picture which would include the views of teachers, other professionals, and parents. 

 

Their general impression gained from the pupil information provided is that the distinct needs of the Asperger group are not being adequately met; rather, there is an apparent assumption that a pupil who is cognitively able to deal with the academic demands of secondary schooling should be able to cope with the overall demands.  However, the reality presented in the interview responses and diaries is of ongoing difficulties in social communication and peer interaction which increase their vulnerability to bullying and to isolation.

Further, the need for routine and predictability and a low level of sensory stimulation is not readily met in the bustling, noisy, and even chaotic (as perceived), atmosphere of the mainstream secondary school; and limitations in training or in the dissemination of information about ASD leaves some staff without the necessary resources to meet the particular needs.

 

Given this, the authors comment that it is not surprising that (as reported by Kasari et al 1999) parental confidence in the effectiveness of inclusion is reduced when pupils with ASD move on to secondary schooling during which vulnerability to mental health problems appears to be greater. 

 

It is acknowledged that the sample of pupils was small and representative of only four schools so that the insights may not be representative of all pupils with Asperger syndrome, and the need is for continuing research by which to highlight experiences and examples of good practice. What is clear is that the simple placing of pupils with ASD in inclusive settings is not sufficient to bring about actual inclusion.

 

                                      *          *          *          *          *          *

 

M.J.Connor                                                                                            February 2008

     

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