The following summaries are taken from a newly published journal - Good Autism Practice - which, as the title suggests, focuses upon practical issues of managing the symptoms and effects of autistic spectrum disorder.
The experiences quoted here relate largely to working with children with high functioning autism or Asperger syndrome in the latter junior or secondary age range, and the advice offered by Elizabeth Newson directly to the children or young people themselves applies to both the primary and secondary sectors.
The common link within this work is the recognition that, while the individuals can help themselves to an extent by means of recognising their particular difficulties or idiosyncrasies, and setting themselves certain goals, the important issue surrounding successful inclusion in mainstream school is that of accepting that the children or young people do have perceptions and behaviours and needs which are clearly differentiable from those applying to normally developing individuals and which reflect a condition which will not be modifiable to any wholesale degree.
What matters, therefore, is that the school staff can recognise the particular strengths, weaknesses, and "style" of the children or young people, and that routines and demands can be made flexible enough to match these individual characteristics. Inclusion involves much more than having the students simply attend their local schools. It is not a matter of forcing some change upon the child in order that (s)he can fit into the existing structures of the school, but of the school's being willing to make individual arrangements, involving both scholastic and social programmes and targets, together with sensitive awareness training among peers of the significance of autistic spectrum disorder. For example, one might seek to replace suggestions of anger management training with some analysis of the particular circumstances which give rise to the student's behavioural signs of anxiety or insecurity or frustration.
Establishing a Base for ASD Students in a Secondary School
The work by Parker (2000) describes the means of creating an environment for students with ASD in a mainstream secondary school so that their needs can be recognised and accommodated, information shared among all staff, and strategies put in place for eliciting the opinions of the young people themselves.
The author describes how the initial project involved setting up a base for 3 students with an autistic spectrum disorder of a high functioning or Asperger type, and that the main objectives were to provide an effective setting to meet the very specific needs of the pupils, to establish a system for gaining as much information as possible about the students thus to highlight their strengths and weaknesses, and to inform the staff accordingly in order to maximise their understanding and empathy.
The suggestions set down by Williams (1996) were utilised in this intitial planning, notably, the recommendations that the room chosen as the base would have as little as possible echo or reflective light, and that the physical arrangements of the furniture and equipment would be unchanging. Further, there would only be displayed that which was relevant to the learning tasks of the time, with no unnecessary decorations or illustrations so that distractors could be kept to a minimum.
The opinions of the students were also sought in order that features considered by them to be important could be included. For example, the choice of colour scheme from one of the students was adopted one another requested furniture of such a type that he could find somewhere to hide himself away when he wanted or needed to be by himself.
In respect of the level of sensory stimulation, care was taken to minimise the risk of over-sensitivity on the part of the students to particular sounds or visual perceptions. Accordingly, the decoration was plain and a roller blind was chosen instead of venetian or vertical blinds thus to minimise any pattern effect. The floor was carpeted to reduce noise, with the colour chosen to match the work tops. Each pupil had an individual pin board on which to place as much or as little as they wished, and the walls were left bare apart from a list of rules and a list of materials required for teaching and learning purposes.
To maximise familiarity, each pupil had his own work space on the work tops which were clearly marked off using tape so that the pupils' places in the room did not change. They were also given stacking filing trays together with a labelled drawer in which to store private belongings or completed work. Cards were provided for each subject area, listing equipment or materials needed for lessons.
The author goes on to explain how each pupil had an individual and visual timetable so that he knew what to do, and when and where to do it. The students were gradually introduced to lessons outside their base so that routines changed only gradually, and the daily timetable reflected the clear routines established offering reassurance to the students about precisely what the day ahead would involve.
It is interesting to note that, to begin with, these and subsequent students did not choose to go into the playground at break times, but were timetabled for a specific game with other students in the base. The next step was for the students themselves to make the choice of game and the person they wanted to share it worth. With time it has become common for students from the base to play football with mainstream peers or to take part in other games supervised by a staff member.
Lunch time was found to be a problem period so that initially the target pupils were allowed into the canteen early and were helped to choose their food by directly looking at what was available rather than by reading a menu. Again over time, it was found possible for some of the students to learn to queue along with other students even if this may have appeared anxiety- provoking in the first place.
A home-school diary is completed daily but any significant concerns are discussed directly with parents rather than written into the diary. Positive comments have been found to be very motivating, and the students are given the opportunity to undertake self assessments and to comment on those activities which they like and where they have done well.
It is recognised that it can be challenging to inform all staff about the particular needs of the targeted students. In particular, it is noted that the staff need to understand and accept that certain behaviours they observe are not deliberately defiant or disruptive, but reflect an anxious reaction to something or someone in the environment which cannot be readily expressed in words.
Staff also are alerted to that characteristic of the students which might involve them offering direct comments which might appear tactless. To aid the process of understanding, regular meetings are held to discuss the students and their progress, and if particular behavioural problems are reported, focused observations will take place in order to determine what might underlie these events. For example, negative behaviour in one student was found to be linked with stress, and the stress in turn was linked to some unexpected event such as the arrival of a visitor to the base just as the students should have been setting off to mainstream lessons. ( The concept of routine was, thus, underlined.) The student was further helped by the development of an " anger gauge " through which he is now able to demonstrate his feelings and to determine if or when calming strategies need to be adopted.
The author reports that pupils with ASD who share the specific base have gradually been able to obtain quite full timetables in a mainstream school. Of the 7 pupils now attending, one is now totally integrated within the mainstream lessons and only visits the base for advice. Another spends very nearly all the week in the mainstream classes, while the remaining 5 students are there for between 50 and 75% of the time.
Homework has continued to be a problem given some resistance to the very concept of having to complete school work at home or given some failure fully to understand what the task involves. Currently, some time in the base is given over for homework, but the goal is that the students will work in a similar way to their mainstream peers.
The conclusion is that getting the right environment is the key issue. This involves the establishment of a secure base coupled with staff awareness of the individual styles of the students, along with awareness in the students themselves that they do have that secure base, that it will remain available, and that they can return tro it at any time as the need arises.
Inclusion of Children with ASD
The work of Plevin and Jones (2000) describes the experience of including a 9 year old girl with Asperger syndrome in a mainstream junior school, and taps the opinions of other children, and parents, concerning the arrangements made and the benefits gained.
These opinions were considered very important given the frequency with which the issue of including children with special co-educational needs leads to a debate concerning the potential effects upon the other children in the class. On the one hand, it can be argued that such inclusion will promote a more understanding and caring society, while, on the other hand, there may be concern lest there is some negative impact on the attainments of the mainstream peers.
In the case of the this little girl in question, it is important to note that she attended a local playgroup with support funded by the authority, and then moved into the primary school with her age peers who have become constants throughout her educational experience.
The first author has also worked as the co-ordinator at the school since the time of J's admission and has been responsible for differentiating the work so that J can follow much the same curriculum as the rest of the class. One notes further that the author was able to attend training about the nature of autism and its management prior to J's moving into the primary school.
On the basis of her observations, this author describes how the other children consistently were willing to join activities with J. In fact, for those children who found relationships difficult, J proved an undemanding friend who played alongside these other children and thus ensured that they had someone to play with.
Meanwhile, the children were very protective towards her and recognised her difficulty in recognising what was safe or unsafe to do.
J appeared to take on the sense of calmness within the class, and it is argued that her acceptance of change and her awareness of socially acceptable behaviour, such as remaining quiet during assembly, was a direct result of being placed in a mainstream school and becoming attuned to the routines. The other children also recognised when J needed or wanted to be left alone.
J is part of a large class, and the differences between her and the other children are said to have become more evident with time. She cannot read, nor understands the concept of written communication, and is offered experiences such as shopping trips which other children do not have. The emphasis in her topic work involves art or cooking or music rather than library research and reading ; but it is important that the other children recognise that J does have clear work demands even if her work may not be the same as their own.
All the other children were interviewed in small groups in order that their views could be elicited, and a sample of parents was also interviewed, with confidentiality assured.
Among the children, the most frequently mentioned negative feature was the level of noise that J created and which could be distracting even if it was understood that the noise reflected some uncertainty or frustration rather than deliberate naughtiness.
Nevertheless, many children felt they were used to this and could ignore the noise ; and without exception the children reported that they learnt from the experience of having J in the class. They appeared to develop a greater empathy towards children with difficulties, and some children said they had enjoyed learning sign language with her.
In respect of the general principle of inclusion, the consensus appears to be that J was probably better to be mixing with a wider group so that she could learn from other children and would be more able to understand normal expectations or routines. They were able to see that specialist provision may not be wholly helpful given the probability that children with autistic spectrum disorder would not readily learn from each other.
Among the parents, there was also the belief that J made a positive contribution to their children's education, and that they had learned tolerance towards other children with difficulties or disabilities. Further, they did not feel that their children's scholastic progress had been inhibited.
The two class teachers who shared responsibility for the class emphasised the significance of the work of the support assistant as well as the ongoing advice from the co-ordinator. It was important always to have ready a whole series of activities in the light of J's short concentration span, and of her difficulty in joining group discussions or story time.
The noisy or erratic behaviour was noted but it was felt to have no particular impact on the other children, and there was a recognition of the responsibility that the children took for J.
The mainstream inclusion appeared to have raised expectations upon J, and there was agreement that the academic performance and behaviour of the other children were not affected by having J in the class.
The authors acknowledge that it is difficult to prove absolutely whether J's presence in the classroom had any impact, positive or negative, upon the attainments of the other children. However standard scores for the children in this class on tests of numeracy and language were compared with the scores of children in previous year groups who had not had a child with complex needs in their classes. Comparison of results showed no differences between the present class and the two previous classes.
Further discussion with children, class teachers, and parents, led the authors to conclude that J's inclusion had a little or no adverse effect on the educational performance or on the behaviour of the children in her class. Instead, it was more likely that J brought benefits to those around her in terms of developing an understanding and an empathy, while learning important life skills themselves from practising how to communicate with someone who has quite different abilities and needs.
It is reported that J has now completed her first year at a mainstream secondary school and has access to her own well-equipped base which can be shared by other girls in her year group at break times.
The learning difficulties rather than the autism per se have more of an impact on her education so that J is included in practical activities like music, PE, drama, etc., but other areas of curriculum need much differentiation. While J could have access to any activities or areas of the school, much of the work tends to be done on an individual basis in her own setting.
The targets over the remaining years of secondary education will concern social and life skills, and it is anticipated that J will remain in her present setting given the continuing support from, and links with, the children with whom she has mixed from those earliest years of educational placement.
The important implication of this work is that there is no threat to the educational or social well-being of mainstream peers from the inclusion of a student with significant special educational needs, but that the inclusive experience needs to be well planned and well supported so that all the activities are meaningful and relevant.
It is highly likely that the continuing curriculum and its style of delivery will be clearly differentiable from what is available to normally developing peers .... and this appears entirely acceptable to peers, staff, and parents.
Communicating to Children and Young People with Asperger Syndrome
Newson (2000) begins her notes by describing her perception that, increasingly, students with Asperger syndrome are trying to gain insights into their condition, and to have access to advice about managing their day to day lives.
It is her belief that students at both junior and secondary school level can be significantly helped by brief and regular sessions of mentoring ; and just a few minutes spent at the start of the day discussing how the day is expected to go and anticipating any unusual features is likely to bring about a positive impact in terms of confidence to face up to those daily demands. A brief review at the end of the day with the same mentor to highlight successful work and to reflect upon difficulties, plus strategies that might help next time, can produce a sense of reassurance in the student and minimise the anxiety that (s)he may have about the transition from home to school.
However, Newsonn recognises that many individuals with Asperger syndrome have particular problems with listening skills and may find it hard to take part in a two-way discussion especially if obsessive thoughts and feelings intervene. Accordingly, it was decided to follow up counselling sessions with letters to the individual students in order to give a visual summary of what was discussed and what was agreed.
The first illustration concerns a nine-year-old boy to whom a letter was written shortly after his diagnostic assessment and a session in which the diagnosis was explained to him. The letter to him begins by emphasising that individuals with Asperger syndrome are all clever enough so that any difficulties in understanding relates to the way people with the syndrome may think differently from those who do not have the syndrome.
The letter goes on to stress that the syndrome is not an illness and is not life-threatening, but it can be a great nuisance even if it is of a mild type. Reference is made to the three biggest problems which are :
The letter concludes by pointing out how it may be necessary to learn from mistakes, or to learn to face some situations which may not be clear, without becoming upset. An example is given of how to answer the telephone in such a way as to give the caller a meaningful answer .... ( rather than simply saying "Yes" if the caller asks if Mrs. X is at home ).
Newson suggests that he should ask the question whether it is the Asperger syndrome that causes some upset or the boy himself who doesn't want to do something. If the latter, that is his decision ; but, if it is just the syndrome, the advice is to tell it to go away and not to be beaten by it.
The second example letter was written to a fourteen year-old boy following his first counselling session, and the letter summarises the content of the meeting.
The first part of the meeting had concerned things that were in need of change, and a brief summary was provided of what was agreed, such as saying something very quick but not very sensible just because of not wanting to get involved in a long conversation, or not being able to talk to people in shops, or not being patient enough to wait for things to happen.
The second part of the meeting and the second part of the letter set out to describe the syndrome, and reference was made to the communication difficulties where one might know what an answer is but it just seems too difficult to express it ; to the social problems such as not being able to predict what other people are thinking ; and to being rigid such as wanting things to be done in a particular way or at a particular time.
Finally, the letter described the positive progress made in acknowledging that there are things to change, and the differentiation is made between the person and the syndrome. Noting that not everything can be tackled at once, a reminder was offered that just two targets had been set, including greeting several other students on the bus each day.
A further sample letter was written to a fifteen year-old boy after two meetings. The boy in question is described as very assertive or argumentative at home but often fails to take advantage of choices available to him at school so that he then becomes depressed and negative. His letter summarises the comments about how to be more assertive in the school setting while pointing out that the school staff can only seek to be be flexible if they are informed about what his needs or wishes are. Also set out in writing were some of the strategies discussed for resolving very negative feelings, such as getting some mental distraction, or making a point of talking to the parents, or simply unwinding by sitiing with family members to watch the television.
Newson concludes by acknowledging that the process of writing the letters can be very time consuming, especially when they follow face-to-face meetings which will also have been relatively lengthy. However, she argues that the benefits of the visual/written material are considerable in reinforcing the contents of the discussions, in helping chidren and young people to face situations which they have found threatening, and in providing a very thorough set of records by which to ensure coherence of counselling meetings and consistency of advice offered.
Planning an Educational Visit
This final article which appeared to be of particular relevance was written by a classroom assistant ( Birkin 2000 ) to describe the preparation for taking a ten year-old boy (B) with an autistic spectrum disorder on a school trip to London with his classmates from years five and six of a mainstream primary school.
The critical first step was that of predicting his likely behaviours in the different situations which he would encounter.
Discussion among all concerned some weeks before the trip to the National Gallery revealed three particular concerns, viz .......
Travelling by train, including underground train ; waiting and queuing ; and some anxiety about new experiences.
In respect of the inexperience of trains, a desensitisation programme was initiated which included regular visits to the town centre to pass the railway station and then visits within the station to look at the trains, followed by longer periods spent inside the station where the boy would be allowed to buy a can of his favourite drink. The final step was taken by B's parents who took him for a short trip on a train to the next station close to where his grandparents lived.
In respect of the problems with waiting, experience had led to the hypothesis that B shouted or ran off when part of a queue because he was bored. His limited social and communication skill led to difficulties in coping with social interaction, and it was decided to give him a favourite book to read while waiting, thus to re-focus his attention.
It was further anticipated that B would be particularly anxious in the National Gallery where the size and type of the exhibits would be unfamiliar. However, at school it had been noted that B benefited from visual cues and a predictable routine, and where there were to be some changes to day-to-day events, B's willingness and ability to cope were increased if there was advance discussion and if he was given visual information as a reminder. Therefore, a booklet was completed by the classroom assistant and B, using photocopies of pictures that were relevant to the trip including trains, the gallery itself, and some of the actual exhibits that would be seen. The pictures were put into a correct sequence, brief text was added, and the booklet was read by B on frequent occasions prior to the trip.
Reports indicated that B successfully completed the day and appeared to enjoy and benefit from the experience. B showed adequate confidence and minimal anxiety. In order to help B remember and more fully to understand the events, photographs were taken throughout the day providing B with further visual reminders of his experience.
It is further reported that other trips have now been organised with B participating fully, but the critical point is the clear planning that has to take place and building on his existing strengths, such as the good reading ability and visual understanding so that, in B's case, producing a booklet in advance of the trip continued to be meaningful and helpful.
An update describes how B now attends a secondary school for students with moderate learning difficulties which has some additionally resourced places for students with autistic spectrum disorder.
Reinforcing much of the content of the first of these summaries, it is noted that the school has had some adaptations made to match B's needs so that, for example, each classroom door is numbered and colour coded to match the symbols that B has on his visual timetable. He has his own clearly identified base where he is able to leave his belongings and from where he collects his daily timetable that points out what he is to do and where to go. Each subject teacher differentiates the work according to B's needs ; and if particular difficulties arise, B can return to his own base.
The conclusion underlines again that meaningful inclusion among a wider sample of like aged peers for a student with an autistic spectrum disorder is possible and potentially beneficial if there is a flexible approach which can take account of individual needs and style. Simply making a school place available does not equate with true inclusion.
M.J.Connor February 2001
All the summaries in the preceding pages were based upon the contents of the journal Good Autism Practice, Volume 1, Number 2, 2000.
Specific articles selected were as follows :
Birkin P. Children with an autistic spectrum disorder and educational visits. 35-41
Newson E. Writing to children and young people with Asperger syndrome. 17-27
Parker M. Setting up a base for secondary-aged pupils with an asd within a mainstream secondary school. 62-69 ( In this article, reference was made to Williams D. 1996 Autism : An Inside-Out Approach. London : Kingsley Publishing )
Plevin S. and Jones G. Inclusion : a positive experience for all. 8-16
© Mike Connor 2001.
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