Further Thoughts on Autistic Spectrum Disorder in Adolescence
This short review begins with a reminder that the presentation of ASD or Asperger Syndrome changes over time, and negative features such as stress may be more significant with the increase in complexity of interactions, the continuing experience of feelings of uncertainty or apartness, and the longer-term reactions of others to the autistic “style”.
The two studies summarised concern, respectively, the reported efficacy of a programme to develop greater self-understanding among adolescents with ASD, and strategies to increase and enhance written output at school among students with Asperger Syndrome.
The Trajectory of Asperger Syndrome
As a prologue to the two recent studies reported, it is helpful to cite the paper by Berney (2004) who described the pattern of changes as individuals with Asperger Syndrome (AS) grow from childhood into adulthood.
Berney sets the scene by referring to the core characteristics of AS (set out by Gillberg et al 2001), which can be identified in relatively young children, as being concerned with limited social relationships ... even social isolation; problems in communication such as a toneless delivery, talking at others, poor recognition of cues and body language, and weakness in comprehending the intent or significance of others’ speech; and a focus upon a narrow range of interests along with an attachment to routines and rituals.
AS may be suspected or diagnosed among pre-school children, but ease of identification is greater when the child begins attendance at a nursery or playgroup, or enters a reception class, and when the social and communicative anomalies become more evident.
Similarly, a move from primary to secondary school can be a major step for any children, but particularly challenging for those with AS given the move away from operating as part of one class with one class-teacher into a setting where there is a frequent need to move from one subject to another with a corresponding change of teacher and perhaps some change in the composition of the class; and where social groupings, and the associated language, are more complex.
The small-scale survey completed by the present writer [Connor 2000] highlighted the frequency of concerns in the self reports of students with AS about the long and unstructured periods, such as lunch-time, involving uncertainty about where to go and what to do, and a sense of apartness. In other words, “inclusion” when focused upon academic demands and any need for differentiation of task presentation or pupil response is only part of the issue, and there remains the question of how to foster a sense of belonging.
There is also converging evidence that, over time, young people with Asperger Syndrome whose level of functioning is greater than that of individuals with “classical” autism, are at an enhanced risk of psycho-social problems such as anxiety because of their awareness of social weaknesses, and their difference from age peers, but without being able to determine how this comes to be so or what they can do to bring about change.
The basic implications would include the potential usefulness of programmes by which to increase peer understanding of the nature of AS and to encourage a greater tolerance to, and acceptance of, their classmates who present with AS; and of efforts to enhance the social skills of the young people with AS by means of direct coaching of certain behaviours, such as initiating contact, within the real-life setting of the school.
In any event, returning to the review by Berney (op.cit), one notes his point that autistic spectrum disorders tend generally to moderate with age in terms of the level of presenting symptoms. However, some symptoms, such as stereotypical behaviours, may continue or increase perhaps as a reaction to boredom or anxiety (or as a kind of displacement activity ... a faute de mieux, one might suggest ... in the face of some arousing circumstance when there is some uncertainty how to react).
It may be that the social and functional demands of adolescence provide the stimuli for the maladaptive behaviours which serve further to set the individual apart and can act as the source of a negative cycle.
Berney refers to the difficulties that are an inherent part of AS but also to the stress of growing up with AS which may not have been identified early and which is certainly not recognised or understood by many of the people with whom the individual comes into contact .... especially give the apparently good language skills and the typically average or better cognitive capacities.
Other pressures arise from scholastic demands (notably, one might suggest, of keeping abreast of a range of subjects, and of completing the necessary written records and course work whose intrinsic purpose may not be clear); and from self-comparisons against more confident peers.
Further, the effects of AS can distort relationships with other family members as well as with peers, all of whom can find it frustrating to face the apparent insensitivity, obsessive behaviours, and “one-sided” communicational style of the individual with AS. The result can exacerbate the secondary (psycho-emotional) difficulties and, as described by Howlin et al (2004), increase the degree of dependency to a level that is out of balance with intellectual capacity.
Among older adolescents and young adults, it is noted by Berney that there will be particular, often subtle, difficulties in communication, social relationships, and interests.
These may include (un-recognised) discrepancies between verbal and non-verbal language, and between expression and comprehension. Communicative abilities may be overestimated ... and providing written notes as a back-up to spoken directions and ideas may, it is suggested, compensate for the comprehension problems and have a highly beneficial impact.
Relationships can be strained and distant, with difficulty in understanding social conventions and the (tacit) rules of friendships, and some risk of accusations of inappropriate behaviour when it is more a matter of failing to read signals or of limited theory of mind (inadequate attunement to the feelings, wishes, and perspectives of the other person).
Interests tend to be circumscribed and individual, perhaps as both cause and consequence of the social interaction problems, with the implication that social networks will not be established.
Berney suggests that certain forms of offending behaviour may reflect a failure to look ahead to possible outcomes, a lack of concern for others, an impulsiveness, misjudged social relationships, an immaturity such that other may take advantage of the individual, and obsessiveness as reflected in a form of harassment of other people or of “collecting” objects of interest ... all within the context of a difficulty in shifting patterns of behaviour. Computer “crime” ... frequently going beyond normal interest in computing and, despite warnings, getting involved in “hacking” activities ... is a possible indicator of unrecognised AS.
Day to day support in the school setting would be geared towards reducing stress associated with unpredictability, and specific support towards enabling the young people to manage the organisation and completion of academic assignments, perhaps by means of task analysis to split larger-scale tasks into a series of steps. The moral is to take nothing for granted (including no assumption that incidental learning will take place), to use clear and non-ambiguous language, and to provide specific instructions to cover all contingencies that can be anticipated.
As indicated earlier, social skills can be taught via a similar process of task analysis, direct coaching, and practice so that problems in conversation, seeking help, sharing group activities, etc, are less likely to differentiate these young people from their age peers.
Berney advocates discreet supervision of self care in respect of hygiene and general appearance given the possibility that obsessional behaviours and other aspects of Asperger style would interfere with such considerations, with further negative implications for social interaction. The issue of relationships with the opposite sex is also likely to require guidance over and beyond the advice and education routinely available because of the scope for misunderstandings.
Self-Awareness in Adolescents with Autistic Spectrum Disorder
In introducing her exploration of how to work with students in respect of understanding and coming to terms with the nature of ASD, Cann (20007) contrasts the improvements in diagnostic strategies with continuing uncertainties about how best to share the diagnosis with the young people themselves.
Her concern is that the initial diagnosis can be seen as a major end in itself rather than the first step of a long process in which family, peers, and the individuals identified with ASD come to understand the implications and work towards minimising, or accommodating to, the autistic symptomatology and style.
Cann holds that the manner in which the diagnosis is shared is a very delicate matter and that professionals may not have had access to training or resources by which to manage this process; and cites as illustration the continuing reports that parents may be left to determine for themselves how to proceed following the formal diagnosis.
The issues that need to be explored with any new case concern who should describe the diagnosis of ASD with the individual child or young person; when this should be implemented; what form the sharing and discussion should take ... one to one or within a small group; what should be included in any programme of self understanding; and what supportive resources are indicated.
This becomes all the more significant in the light of existing self reports to the effect that an understanding of the diagnosis, and the explanation of the range of characteristics, are important for young people with ASD in the process of developing a self acceptance and self confidence, and of avoiding some ongoing uncertainties and feelings of difference which can otherwise underlie anxiety and depression.
In a brief review of some of the relevant material, Cann recommends two sources of guidance concerning the sharing of the diagnosis ... Jones (2001) and Murray (2006) ... in an otherwise somewhat sparse literature available.
Meanwhile, it is recognised that this process can give rise to ongoing difficulties, and reference is made to issues cited in research findings such as ...
Nevertheless, the balance of findings and reported experiences demonstrates that the potential gains from sharing and discussing the diagnosis outweigh the potential hazards ... and the possibility of unplanned or unwitting disclosure is certainly to be avoided. So, as set out by Whitaker (2006), it is important that the individual is made aware of his/her diagnosis of high functioning autism or Asperger Syndrome, with further reassurance offered that many individuals with ASD have agreed that learning about the diagnosis was beneficial.
Jones (op.cit) identified five likely benefits for the child or young persn in gaining an understanding of the diagnosis ....
However, in respect of timing, no general guideline is practicable. Too early an attempt to discuss autistic spectrum disorders may only lead to confusion and heightened anxiety in the child; but too long a delay may increase the scope for confusion and frustration. One suggestion (Attwood 1998) is to follow the lead of the child and to respond when he or she begins to ask questions ... always mindful of the complication that many children may not have the vocabulary or capacity to articulate their uncertainties so that parents or significant others need to watch for signs of anxiety etc. which may indicate that the time is right to begin the process of learning about the implications of ASD.
Meanwhile, older individuals may be all the more sensitive, and Whitaker (op.cit) offers the advice to share the diagnosis before adolescence given that this period is associated with enough existing pressures.
The implication is that the disclosure and discussion of the diagnosis should be preceded by enabling the child or young person to gain a clear sense of his or her own identity in terms of strengths and weaknesses.
A further element to guide the decision is the readiness and willingness of the parents or carers to accept this sharing and to provide the appropriate follow up.
(Reference is made to the variation in individual readiness of this kind, and to the work of Newson  who worked with samples of 7-year old children as well as with older children.
One rule of thumb has indicated that children often start to ask about their status at around 9 years of age.)
In respect of who should initiate these discussions, one argument has it that the responsibility should lie with the parents or carers given that they have the greatest knowledge of the child; a counter view suggests that this would not be appropriate because of the risk that some resentment might be aroused towards them ... and discussions with adolescents could well be particularly challenging so that more impartial input from mental health professionals is indicated.
The experience of the professionals would also be valuable in highlighting the issue of the child’s level of understanding, and of the risk of some selective memory or misinterpretation, and in sharing plans about how to meet certain challenges ... such as what name to apply to the condition, whether it should be perceived as a disability or as a particular style (a difference rather than a disorder), and the level at which to pitch the discussions and the language used. The need is for an ongoing and gradually expanding accessing of information and advice, alongside the continuing process of helping the young people to gain a clear view of their individuality in terms of interests, skills, hobbies, and talents as well as areas of relative weakness.
As far as individual or group sessions are concerned, Cann acknowledges that this can only be determined by an awareness of the needs of the individuals concerned and of the likely dynamics in a group. It is also recognised that, in the real world, such debate may remain secondary to the demands of the school time table and not being able to release students from classroom sessions of varying degrees of perceived importance.
There are advantages in individual sessions in terms of appropriate pace and the development of a positive relationship, while group sessions can engender a sense of belonging and enable the young people to work with others experiencing similar situations and feelings. Further, in a group, the more confident participants can support the more diffident and withdrawn participants. The implication would suggest a combination of one to one and shared sessions.
In respect of resources to aid the self-understanding programmes, Cann refers to the workbooks of Vermeulen (2000) and Faherty (2000) as helpful frameworks ... while also describing from her own observations that the first practical task is to highlight the need for such programmes in the first place given that support staff appear to focus upon the understanding of ASD on the part of teachers and other adults, and that work on self-understanding for the children and young people themselves appears to be somewhat limited.
Also helpful are specific stories, or biographical accounts of ASD, as a means of gradually introducing the topic via the children’s ability to identify with characters in this material, thus providing the opening for a discussion of strengths, individual style etc.
What matters is that no single source of material will be appropriate for all children and young people, and one needs to be selective while also remaining sensitive to the extent of readiness of the participants to pursue certain topics, or to accept the ASD status at all.
Cann’s own experience of delivering self-understanding programmes served to highlight the importance of a step by step approach ... beginning with a general exploring of the interests and talents of the small group (n=4) of participants, encouraging them to bring in valued objects and possessions to describe to the rest of the group, etc. and only gradually becoming concerned directly with ASD, perhaps in following up comments from one or other of the group. Also seen as helpful was this group format in providing the opportunity for learning from each other and in reinforcing the sense of not being alone.
Acknowledged shortcomings included the inadequate process of baseline assessment and follow up assessment in relying initially upon parental reports and ratings, but subsequently relying on the reports of the members of the group. There could also be some questions raised about a lack of external evaluation, but Cann described the difficulty of obtaining opinions from the young people, or in shifting their attention from the activities in hand, even on the part of an adult who had become a familiar figure.
Despite this, Cann reported that the exercise did have beneficial outcomes in terms of references to greater awareness of ASD, reduced frustration, and general enjoyment of the sessions (and parental comments about more positive behaviour and easier communication).
Her conclusion highlighted the need to share the message about the potential value of self- awareness work, and the desirability for support for parents in this domain; with ongoing research required (as set out by Whitaker [op.cit]) to evaluate approaches to sharing and discussing the diagnosis, to aid the development of further strategies, and to provide guidelines about when and how to begin the process.
Asperger Syndrome in Adolescence and Written Output
Delano (2007) opens her research report by describing writing as a complex process involving a sequence of elements ... planning, producing a draft, checking, revising, and completing a final version.
She also cites the common view that students with Asperger Syndrome (AS) show greater variability in their written language working in response to standard tests and assignments than typically-developing peers, and that output tends to be limited in quantity and quality. The implication is for identifying strategies to enhance writing given its significance for general progress in school and in post-school working.
A review of studies concerning “self-regulation” indicates that when children with learning difficulties are taught specific strategies and self-monitoring procedures
(such as goal setting, checking, and self reinforcement), there is improvement in the content and amount of written work.
One form of self-regulated strategy development involves video monitoring and observational learning. This method has participants watch video recordings of their accurately completing some chosen skill or behaviour ... such as reading fluency, maths competence, or keeping on task.
Video modelling has been used with children and young people with autism to develop a range of social, communicational, or functional skills (see, for example, Ayres and Langone 2005); but Delano reports no evidence for the use of the approach with academic skills among this population.
Accordingly, Delano’s own study set out to evaluate the use of self-regulation procedures to foster an academic skill in adolescents with AS.
Three boys (aged 13, 15, and 17) who all met the criteria for AS, and who had identified writing as a problem, were the participants. The youngest boy was in private education in an age appropriate class; the 15 year old was in a mainstream high school and receiving general educational provisions with access to some specialist educational resources; the oldest boy was in a private school receiving all education in a small group setting.
Baseline information was gathered on the number of written words (regardless of spelling accuracy), the time spent, and the number of “functional elements” such as premises, reasons, elaborations, and conclusions contained within a standard assignment. This information was based on the independent judgements of two raters who examined a piece of writing about some issue where the participants had been prompted to write a piece to convince others to accept their opinion. (The example cited was that of seeking to convince the school principal to allow students to use mobile phones at school.)
After the baseline evaluation, each student worked with the help and prompting of the experimenter, in a 30-minute session, to produce a video of himself modelling a self-monitoring strategy. This included talking aloud while counting the words in his essay, recording the number on a bar chart, checking whether the goal had been achieved, and setting a new target for the next piece of work.
A further session with the experimenter was devoted to producing a video model of the student using a strategy by which to ensure the inclusion of appropriate elements. The framework adopted (see Graham and Harris 1989) was designed to ensure a reference to the topic, reasons, explanations, and an appropriate ending (using the mnemonic TREE); and the student talked aloud according to the prompts given, while close up shots were taken of the TREE outline as the student completed each step.
Subsequent sessions concerned with quantity began with a viewing of the first video, and those concerned with producing enhanced content began with a viewing of the second video.
The use of the first video was discontinued after three consecutive sessions in which output was at least 10% better than at baseline.
Follows up were conducted one week and three months after the final intervention sessions.
The observed results indicated that, when the self-regulating procedure was introduced, each student showed gains in the number of words written. Two of the three participants also showed a clear increase in the duration of their writing efforts, markedly so in the case of the 15 year old (an initial average of 52 minutes to 82 minutes) and gradually so in the case of the 17 year old (from 12 to 15 minutes).
In respect of response to the modelling of functional elements, the average number of words increased for each student, suggesting that targeting of elements may have increased output because more words are required to cover these elements; and there was an increase in the frequency of functional elements in response to the appropriate video modelling (and an increase in the duration of sessions) for all three students.
It was, therefore, concluded by Delano that this self-regulating scheme was effective in producing lasting changes in the written output of this small sample of adolescents with AS.
However, the gains observed in the use of functional elements were not maintained by the time of follow-up after three months, suggesting that a longer intervention period was needed.
Meanwhile, Delano acknowledges some limitations in this current study such as the brevity of each phase and the somewhat artificial situation; the difficulty in determining the relative efficacy of the strategy instruction and of the video methodology; and the need to compare video self-modelling with peer modelling (to determine if the self-modelling has a greater impact in attracting and maintaining attention).
Nevertheless, this pilot study was seen as a valid exploration of the self regulating model applied to academic working, and as providing cues for future investigations.
(The present writer – MJC – would simply comment that this study could be taken as further support for the principle, when working with children and young people with autistic spectrum disorder or Asperger Syndrome, of taking nothing for granted and of using direct and explicit teaching of components of a task, identified via task analysis, while ensuring adequate time for the assimilation, practice, and consolidation of the skills taught.)
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Ayres K. and Langone J. 2005 Intervention and Instruction with video for students with autism. Education and Training in Developmental Disabilities 40 183-196
Berney T. 2004 Asperger Syndrome from childhood into adulthood. Advances in Psychiatric Treatment 10 341-351
Cann A. 2007 Developing the understanding of self in secondary-aged children with autistic spectrum disorder. Good Autism Practice 8(1) 49-63
Connor M. 2000 Asperger Syndrome and the self reports of comprehensive school students. Educational Psychology in Practice 16(3) 285-296
Delano M. 2007 Improving written language performance of adolescents with Asperger Syndrome. Journal of Applied Behaviour Analysis 40 345-351
Faherty C. 2000 Asperger’s ... What Does It Mean To Me ? Arlington : Future Horizons
Gillberg C., Gillberg C., Rastam M. et al 2001 The Asperger Syndrome (and high functioning autism) Diagnostic Interview. Autism 5 57-66
Graham S. and Harris K. 1989 Improving learning disabled students’ skills at composing essays. Exceptional Children 56 201-214
Howlin P., Goode S., Hutton J. et al 2004 Adult outcome for children with autism. Journal of Child Psychology and Psychiatry 45 212-229
Jones G. 2001 Giving the diagnosis to individuals with Asperger Syndrome : issues and strategies. Good Autism Practice 2(2) 65-75
Murray D. 2006 Coming Out Asperger : Diagnosis, Disclosure, and Self Confidence. London : Kingsley
Newson E. 2000 Writing to children and young people with Asperger Syndrome. Good Autism Practice 1(2) 17-27
Vermeulen P. 2000 I Am Special : Introducing Children to their Autistic Spectrum Disorder. London : Kingsley
Whitaker P. 2006
Why is it all so difficult ?
Sharing the diagnosis with the young person. In D. Murray (Ed)
Coming Out Asperger : Diagnosis, Disclosure, and Self Confidence. London : Kingsley
© Mike Connor 2007.
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