Continuing Thoughts on Social Inclusion and (High Functioning) Autism
These notes refer to only two recently published articles but may be considered salient in the light of the apparent increase in the prevalence of children and young people who are being identified with autism and ASD, of whom a significant number will be part of mainstream classes both during statutory education and during higher/further education.
The first concerns social networks in mainstream schools and the extent of involvement of children with ASD where observations may not match self-reports about inclusion, raising questions about differentiable meanings or expectations applied to friendships on the part of the target sample and typically developing peers.
The second returns to the theme of preparing for admission to college and the means of addressing and compensating for the social and other difficulties or anxieties that may be anticipated among students with autism and ASD.
M.J.Connor July 2007
The study by Chamberlain et al (2007) begins by highlighting impairments in social interaction and difficulties in making and maintaining peer relationships as a major element of the deficits that are associated with autism.
They note the increasing trend towards mainstream educational provision, which is intended to enhance social as well as academic performance, but hold that little evidence exists about how the children with high functioning autism form relationships and friendships in these settings.
What evidence they are able to cite appears inconsistent in that some findings stress the benefits both to the children in question and to their peers, while other findings provide examples of increased rejection and of isolation.
(The present writer - MJC - would comment that this already infers the danger of seeking to establish general conclusions and convert them into general principles when each situation will be unique in terms of the precise profiles of skills and weaknesses among the children identified with ASD, their history of experiences, the nature of the peer group [ including their awareness of the implications of autism and their prior experiences of sharing scholastic and social activities with children so-identified ], the nature of the school and its particular atmosphere and priorities, and staff experience and aspirations. Inclusion remains an ideal to work towards, but it may remain the case that, for some children, a place in the regular class is not the best option and may even be counterproductive until such time as the inhibitory features are identified and prove to be modifiable.)
The questions raised by Chamberlain et al concern the need to know the nature of the social structure in which the child is being included, the peer relationships that are available, and the impact upon the child’s status.
With a view to gaining information, the authors followed the procedure for studying social network clustering set out by Cairns and Cairns (1994). This provided the opportunity to explore how the children with autism perceived their own social connections within the classroom, and also of how other children perceived them.
Some relevant research findings are then reviewed leading to the implication that children with autism and typically-developing peers may well have different views concerning what a friend is or what a friend does. A friendship involves an awareness of the other person’s feelings which may not be the same as one’s own; but this is the very area where the child with autism may have some disadvantage such that his or her perception of “a friend” may be more superficial and limited, for example, to someone who responds to a greeting.
Further, friendships are voluntary on both sides so that the maintenance of a friendship requires a balance in terms of what is contributed and what is gained by each of the individuals. Each may need to contribute support and dependability, some empathic appreciation of difficulties, opportunities for fun, etc., which may place the child with autism at some disadvantage so that the required balance may not easily be achieved.
In other words, access to friendships for the autistic children can be the means of developing interpersonal skills but can also be the source of challenges and risks in respect of rejection and isolation.
In this regard, there are converging observations ( eg Garfinkle and Schwartz 2002) that mixed-ability friendships can have a positive effect upon the performance of the chid with the disability through the provision of appropriate social, and behavioural, and communicational role models. On the other hand, there is the risk that the child can become dispirited as a result of comparing self with the other child(ren) with the outcome of a greater sense of isolation.
For these children, therefore, the authors describe the difficulties of participating in the social world as a result of misunderstandings of social signals, and the risk of peer rejection following actions which the peers perceive as provocative in some way when they actually reflect a problem in coping with the subtle rules and conventions concerning communication and interaction.
A distinction is then drawn between friendships, which exist between two persons and involve a strong and reciprocal emotional tie, and social networks which are informal clusters of children and young people enduring over a period of time and from which some dyadic friendships may emerge.
The work of Cairns and Cairns (op. cit) in this field involved asking all members of a class to report on the extent of their contacts across the whole of their classmates as a means of gaining a more comprehensive picture than would be obtained from self- reports of selected pupils.
Findings have typically shown that there is considerable variation in peer clusters from year to year, although children do tend to make and maintain connections with others who share the same characteristics. For example, children with learning difficulties, or children with emotional/behavioural difficulties, are observed to form clusters; and this “homophily” ( the tendency to be drawn to those people perceived as similar to oneself) is said to be a highly consistent finding among studies of social networks.
In their own work, Chamberlain et al examined how children with autism manage the social environments in mainstream classrooms between the 2nd and 5th grades ( with ages between 7+ and 11+). In particular, they were interested in the extent to which these “included” children were truly part of the peer social networks, and how they stood on measures of social network participation and acceptance, or isolation, compared to typically developing classmates. An implicit question concerned how the perceptions of this target group of children compared with the perceptions of them held by other children.
The participant sample was comprised of 398 children ( 196 boys and 202 girls) of whom 14 boys and 3 girls had a diagnosis of high functioning autism or Asperger syndrome. All the latter children had measured ability levels in the average range
( mean 107; range 89-129).
Social network reports were gained from all the children, along with self-report data and friendship nominations from a subsample ( 109 boys and 130 girls) for whose participation parental permission had been given.
For each of the 17 children with ASD, a peer of the same gender was randomly selected from the rest of the class in order to produce a direct comparison group.
All the children completed a questionnaire about social networks whereby opinions were sought about which children tend to “hang out” together ( with their own names to be included). This free recall method was thought likely to produce more meaningful information than simply asking the children to take a list of class members and allocate them to groups.
The children completed the Loneliness and Friendship Qualities Scale in which they nominated a best friend, the top three friends, and those considered general “buddies” with whom they commonly associated.
The acquired data were used to highlight the extent of reciprocity and peer acceptance.
Also administered were the Asher Loneliness Scale ( involving a rating of the degree to which statements apply … eg “I feel left out of things at school” or “I get along with my classmates”); and the Friendship Qualities Scale ( involving a rating of the applicability of a series of statements by which to gain an indication of closeness, security, conflict, and helpfulness of friendships).
Parents were invited to offer observations of the children’s inclusion experiences and peer relationships; and informal observations were made of the children in their classes. Parents and teachers were invited to comment on the children’s social network reports and discuss how well the picture given was confirmed by their experiences.
The findings and observations revealed a mixed picture of the extent of involvement of the children with autism in the social structure of the mainstream classes.
It appeared that these children would not be described as socially isolated, but some had only a few weak associations and no reciprocal friendships. Meanwhile, others appeared to be centrally involved and to enjoy a high level of reciprocity.
The observed patterns within social networks demonstrated that the children with autism were more likely than matched peers to have cluster connections involving girls … perhaps indicating that girls are more prepared than boys to take on a kind of caring role.
In some cases, the child in question was only part of the social structure by dint of a link with one popular child.
In other cases, the child formed part of a small group set apart from the main clusters.
Overall, then, the children with autism experienced an average level of social network “centrality” that was lower than that experienced by peers. They were less well accepted and had fewer reciprocal friendships within the best friend or top three nominations.
However, the reports of the children included levels of closeness or security ( or conflict) similar to those of peers; and they described no greater degree of loneliness.
The authors followed up this apparent paradox by noting the difference between the self perceptions of the children with autism, and the perceptions held of them by peers. The target children see themselves as more involved than their peers do even if it appears that their friendship nominations are less likely to be reciprocated; while the typically developing children regard their friendships with the autistic children as being qualitatively different from their other friendships.
They also comment that, even when a child is not generally seen as a group member, classmates may work hard towards his or her involvement, and show levels of acceptance that same age but non-classmate peers might well not show … although the efforts may be inhibited if the child with autism appears something of a burden.
There is also a confirmation of the view that an important variable in peer attachments for children with autism is the active and facilitative effort by parents and by teachers in encouraging, respectively, extra-mural contacts outside school plus identifying shared interests, and shared and cooperative activities within the classroom.
The authors go on to suggest that friendships and social interactions in the case of children with autism appear not to have the same quality as those involving typically-developing children, but that this may not matter. If the children in question are satisfied with their social experiences then full reciprocity would not be an issue.
In respect of the question why children with autism report low levels of loneliness despite lower peer acceptance and limited social network involvement, the authors argue that this would not be a matter of deliberately giving misleading answers in the self-report exercises. The characteristic deficits in theory of mind would inhibit any such action.
They ponder whether it is a matter of gaining sufficient emotional support from the extent of social interaction and reciprocity that does exist; or of a failure to appreciate the relative weakness of their social performance. If a sense of loneliness is what results from a mismatch between the desire for friendships and the actual extent of friendship, is it possible that the low level of loneliness reported by the children is a matter of a relative lack of concern about being part of groups or dyads, or of a lack of realisation that they have only a limited involvement in such relationships ?
Could it be because they do belong to a group of some kind ?
The concept of a kind of obliviousness regarding social status and opportunities is supported by this current study.
The authors comment that the loneliness reported by the ASD group is not related to the actual degree of social network participation, while, among the larger group of peers, it appears that there is a clear correlation between the social network participation and feelings of loneliness. It may be that the typical children realise when they are being left out, with resulting negative emotions; whereas the children with ASD are less aware of their limited involvement ( and may, for example, nominate a greater number of children as friends than is reasonable).
Meanwhile, one practical implication concerns the lack of social skills among children with ASD in respect of initiating social contacts or in contributing to relationships by suggesting and planning activities. Social contacts among the children with ASD in inclusive settings will be enhanced if they extend beyond the confines of the school; but children with ASD may need enhanced support and encouragement from teachers and parents to cross the school-home boundary via, for example, identifying activities and interests to share with peers.
In respect of possible confounds or limitations in their study, Chamberlain et al acknowledge that detailed information from the children was limited to those for whom parental permission had been gained. It was thought possible that parents who felt that friendships and social experiences were not a positive domain for their children would have been more likely to withhold permission hence, perhaps, widening the apparent disparity between the children with ASD and this ( less than fully representative) sample of peers.
Nevertheless, they felt able to highlight the social issues surrounding classroom experiences for children with ASD and the need for ongoing work to identify strategies by which to help these children to establish more effective interactions with peers.
( The present writer – MJC – would respond to this by some concern about the converging evidence noted over time that children towards the higher functioning end of the autistic spectrum are more prone to emotional difficulties or disturbance than children whose functioning is at a lower level. One is also aware of worries expressed by some parents about the day to day peer interactions [ or non-interactions ] of their children with ASD who are attending mainstream schools, especially in the senior sector.
The implication seems to be that anxieties and self doubts and insecurities, etc, are more likely among those children who have some awareness of their difficulties, notably in the social domain, but who do not quite know their source or how they might address the issue of their apartness …. and this current study reinforces the worry lest, for some children, the experience of mainstream placement could, irrespective of the care and supportiveness of staff, increase these feelings of difference and allied anxiety. A state of “blissful obliviousness” is hardly ideal; but one worries whether there are some children who experience social isolation or, at least, limited interactional opportunities and/or teasing, and who are not oblivious to the situation.
As always, one can only repeat the principle of individual planning by which to determine the best option for any given child with his or her unique characteristics and experiences and circumstances. There is no one set of provisions which is appropriate for all cases even if they appear ostensibly similar.
The implication for professionals might usefully include very close monitoring of performance among the children concerned, and to include, as far as practicable, information and observation about social interactions given the significance of peer relationships not only in class but also outside classroom time. Inclusion is a positive ideal, but apparently adequate scholastic achievements, and an absence of overt behavioural or emotional incidents, may not be enough fully to be reassured that the children are happily and truly included.)
Transition to College/University
The thoughts and advice produced by Adreon and Durocher (2007) reflects the growing realisation that it has become an established routine for many or most young people with (high functioning) ASD to attend mainstream schools, and they are increasingly taking up places in higher education … but the “database” concerning their precise needs in respect of the social and the academic demands of college life is seen as limited when compared to what is known and acted upon in respect of young people with learning or sensory needs.
Further, they perceive a continuing requirement among college staff to build greater knowledge of the particular needs of this population of young people, both in general terms and in respect of idiosyncratic variations among individuals whose symptoms will cover a range of areas and levels of severity.
In this, their notes are comparable to those of Martin (2006) summarised in an earlier paper in this series (ASD : Further Thoughts on Inclusion : Junior or Secondary School, and University – March 2007). However, it may be both useful and reassuring to highlight the main points of the Adreon and Durocher paper, thus to reinforce the general principles.
The introductory point is that students with ASD are characterised by difficulties with reciprocal social interaction and communication, and commonly display a pattern of restricted or stereotyped activities and interests. These features may change over time and with increased maturity but the basic ASD nature will remain present and will be manifested in one form or another.
College and university life is the scene for establishing new social networks and enduring friendships and relationships as well as for gaining educational qualifications, but the concern is that the young people with ASD may not show any lack of motivation and interest in this direction, but an uncertainty about the processes for establishing and maintaining the relationships.
Weak theory of mind, poor capacity to read subtle and non-verbal communications, and some difficulty in attuning to social rules and conventions may lead to misunderstandings and to negative peer attributions towards the young people concerned ( such as indifference, or disinterest) and to an enhanced risk of being teased or taken advantage of.
Similarly, idiosyncratic communication style and a limited following of rules about conversational exchange and proximity may also inhibit the establishment of positive interactions and acceptance especially if there is the further problem of inhibited rate or accuracy of comprehension of what is heard ( which may be marked when it comes to slang or figures of speech or jokes).
The further area of significant weakness in the context of admission to college and of interactions therein, cited by these authors, is that of repetitive behaviours and mannerisms, and a restricted range of interests which, if pursued intensely, will limit the opportunity for social activities. Anxiety about shifts in routines, and an associated inflexibility in behaviour, or an insistence that other students should adhere to some rule or routine, will have the same effect.
The authors applaud the additional support for which students with special needs may prove eligible, but it is their worry that the use of some overall classification will not suffice to highlight the particular needs of students with ASD, with implications for greater attention to be devoted to organising the transition and paving the way.
They hold that the students in question will share with students who have learning difficulties the problems of accessing academic content, organising their own learning, and time management, but will have further problems notably in respect of social issues and associated anxiety.
Therefore, the first matter to settle is choice of college. Would a small and local college be preferable to one with a very large student intake and a wide-spread campus ? ( Or would the small size throw into sharper relief the difficulties of the students ?)
Might a specialised college be preferable in allowing a focus upon the particular area of interest ( with that interest, presumably, shared by fellow students) and no demands for spreading efforts across a wider range of courses ?
Would continuing to live at home for the first year of college course be helpful in limiting the extent of the transition … ie would the student best attune to the academic and organisational demands first, with the social issues to be faced subsequently?
(Or would daily travel be as great or greater a problem so that a reasonable compromise would be the selection of a college near enough to home to allow for ease of visiting and access to parental support ?)
The authors suggest that, if living at college, the students might best be suited to a single room, and that the match between existing living/independence skills and the demands of living away from home is examined. It may be necessary to gain prior awareness of catering arrangements and determine, if necessary, how to ensure some escape from very noisy and busy settings. Similarly, issues concerning personal hygiene, organising daily routines, use of passes …. anything concerned with communal living …. might need rehearsal ( with some further support from the authors for the suggestion of living at home for the first year as a time for gradually developing further independence skills).
Taking nothing for granted appears the key, so that one might usefully ensure the students have, in some prominent place, notes and guidelines about college routines; and even if living at home for a period, the student could still be given gradually increasing experiences in respect of budgeting and shopping and any skills which would be assumed when living at college.
Further, the students will probably need advice and support in terms of gaining appropriate support at college, and ensuring access to facilities to compensate as far as possible for the particular needs associated with ASD.
These might include help with note taking ( or with tape recordings of lectures); taking tests and examinations in quiet and non-distracting settings and having extra time for their completion; some reduction of group assignments; oral assessments as an alternative to written assessments; an eclectic selection of course units; and enhanced advice and support to cover organisational and study skill needs as well as social needs (with the implication that a mentor could be very helpful in steering students through the formal and informal, social and scholastic, rules and routines of college life).
As with transitions between stages of statutory schooling, the move from school to college would benefit from induction strategies, such as taking a (short) college course simultaneously with continuing school attendance; taking a summer course at the college prior to admission; familiarisation visits; and extending the length of the course so that the work load may be reduced in the first year.
As noted above, the key lies in seeking to anticipate all the possible difficulties and pitfalls and to have strategies ready to avert them or to meet them as or if they arise; while, if possible, spreading the new challenges over a longer time scale as opposed to the students’ facing the combination of new social and scholastic and practical demands all at the same time ( which is a major challenge for any young person who is leaving school and heading for college, but a particular challenge to the one with ASD).
* * * * * *
M.J.Connor July 2007
Adreon D. and Durocher J. 2007 Evaluating the college transition needs of individuals with high functioning autism spectrum disorders. Intervention in School and Clinic 42(50 271-279
Cairns R. and Cairns B. 1994 Lifelines and Risks. New York : Cambridge UniversityPress
Chamberlain B., Kasari C., and Rotheram-Fuller E. 2007 Involvement or isolation. The social networks of children with autism in regular classrooms. Journal of Autism and Developmental Disorders 37 230-242
Garfinkle A. and Schwartz I. 2002 Peer imitation. Topics in Early Childhood Special Education 22(1) 26-38
Martin N. 2006 Strategies which increase the likelihood of success at university of students with Asperger syndrome. Good Autism Practice 7(20 51-60
© Mike Connor 2007.
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