This brief set of notes was stimulated by the possible dilemma between enabling young people with autism and ASD to have as full an opportunity for community participation, including work experience, as their normally-developing peers, and ensuring their safety.
General advice about planning such activities is summarised, with some emphasis upon work experience where maximal communication and information-sharing with the potential employer are seen as crucial.
M.J.Connor August 2004
These notes are yet a further reflection of the significance of the number of children and young people identified with autistic difficulties.
As an introduction, one might quote Simpson(2004) who looks back over his career in the field of special educational needs, particularly with regard to autism, and describes the marked change that has taken place over recent years. Autism is no longer a relatively rare or relatively unrecognised disability but has become a major issue. Further, it has been recognised how wide is the range of needs and their level of severity compared to the greater homogeneity with which children and young people with autism were perceived in the 1970s when Simpson began his work.
He goes on to note that autism or ASD can no longer be seen as a low-incidence disability given the frequency of occurrence of this type of need; and the implication is for “a daunting challenge for schools and communities in developing an infrastructure to serve a far greater number of individuals ”.
However, there is seen to be an additional problem in terms of a kind of “mystique”, maintained despite the frequency of references to autism in the media and the advances in knowledge about this condition or how to manage the symptoms and behaviours.
Simpson acknowledges that this is understandable when it is recognised that individuals with ASD do form a challenging group with unique characteristics and idiosyncratic/multiple areas of need.
A further issue is that of determining how best to intervene, with one school of thought arguing for the need for distinctive and specialist intervention methods and placements. In this respect, it is noted that there remain controversies over what might be thought the most appropriate programmes of education and intervention, with frequent recourse to new and controversial methodologies which may lack empirical backing … and even satisfactorily evaluated interventions, such as applied behaviour analysis, may actually cover a range of specific methods and goals so that, with the possible complication of “therapy drift”, it is not always clear what precisely is being provided or at what intensity.
Simpson concludes by describing a dilemma in that the children and young people with autism and ASD have very significant needs but it is still unrealistic to assume that all teachers and support staff working with this population will have completed comprehensive training, or that all areas will be served by multi-professional teams able to offer a variety of best practices and to evaluate outcomes.
He believes that there is no single and universally effective approach for students with autism, and that it is becoming clearer that the most effective programmes are those which incorporate a variety of elements according to individual needs.
The present writer – MJC – would suggest that, paradoxically, one of the most significant challenges can be presented by those young people who have an autistic spectrum disorder which is unarguable but which is such that (s)he is a candidate for a mainstream (secondary) school.
The problem is that a school provides an intensely social setting where both formal and informal components are a matter of group interaction, and the particular style of the individual with autism may present challenges for social integration and acceptance … and a small scale survey of the attitudes of a sample of such young people attending mainstream schools (Connor 2000) revealed a consistent and shared anxiety about what they should do or where they should go at break and lunchtimes.
The problem can be exacerbated by apparently adequate language skills (with the tendency towards literalness, or problems with pragmatics, not immediately evident) and adequate or better scholastic skills in at least some areas, so that the very real needs may not be appreciated …. notably the problem with theory of mind, and how to manage changes to routine or unexpected events.
This kind of practical difficulty was well illustrated by a case of a boy with ASD attending a mainstream comprehensive school and who, like everyone else in his age group, participated in work experience. In short, this experience appeared not to go well given the boy’s non-recognition of what was expected of him in a setting where he would be dealing with members of the public … he tended to talk at them for some length of time; and he went missing for periods when he followed up some particular matter which interested him, including one occasion during his lunch time when he caused concern by his very late return.
This highlighted the dilemma whereby, as a student at the local school, there is the right and expectation that he has access to the same opportunities and challenges as anyone else; but it raises the question of how one might modify the demands in order to take account of the particular weaknesses or idiosyncracies, and how much one discusses potential difficulties with the staff at the work setting.
The practicality of work experience for the student with ASD has been discussed by Lee (2003), albeit with reference to students attending a non-mainstream school providing for moderate learning difficulties, and which also has provision for students with difficulties on the autistic spectrum.
Lee notes that the transition from school to work can be challenging for any young person, and the weaknesses in communication and social behaviour will make the transition particularly challenging for those with ASD. Stress can be aroused by having to face new situations, settings, and routines, and meeting a range of different staff.
Practical difficulties over identifying an appropriate work experience setting can result from the well documented language and communication weaknesses (eg Jordan and Jones 1999), including limited comprehension, even if speech is good.
There may, consequently, be a lack of self-sufficiency in following, or even understanding, day to day instructions.
The possibility of repetitive questions may also interfere with getting on with tasks set, and will interrupt the establishment of routines both for the young person and the supervisor(s). Similarly, a tendency to fail to respond appropriately to general conversation, or to appear to ignore what is being said, will be disruptive to work routines as well as working relationships.
There is also the possibility that there is a tendency to regress into negative behaviours when there is uncertainty or a need for help which cannot readily be expressed in words.
The outcome could even involve some withdrawal and an avoidance of interactions, with the complication that such behaviour could be (mis)interpreted as an aloofness by staff at the work place who might increasingly choose to ignore that individual.
The immediate implication, therefore, is that the employer and existing staff do need to know about autism and ASD generally, and about the particular profile of strengths and weaknesses of the young person embarking upon work experience.
Such information might usefully include the social anomalies such as the uncertainty about unspoken rules (about social distance, for example, or about touching which, in extreme cases and without fore-knowledge, may lead to irritation or embarrassment among the staff).
As with the school setting, it may not be the work itself which is the main threat to a successful placement, but coping with the social aspects, and a further implication is the need for the consistent availability of one identified adult to whom the young person can turn when(s)he is feeling anxious or is uncertain what to do. Unlike non-ASD individuals, there will not be the facility automatically or even subconsciously to shift responses as routines change, and the employers need to be that much more supportive than would be the norm.
Lee goes on to suggest, however, that providing a work experience place for a young person with ASD does place special demands on the employer and staff, but that they have a right to expect a certain standard in the work covered. The experience would be meaningless if the person in charge did not point out where or how things were less than satisfactory and how, specifically, improvements could be brought about.
Specificity and explicitness in the way of instructions or suggestions for improvement are legitimate if the individual with ASD does not easily follow a model or cannot recognise more subtle hints. There may be an assumption that all is fine unless or until this explicit feedback is delivered … and what might seem somewhat blunt or very personal advice to most people is probably just what is required by the person with ASD.
Lee describes the work placement practices that have developed at the specialist school. One would stress again that the students in question will probably have greater difficulties than what is typical among those attending mainstream schools, but the general principles for assisting both populations may show much overlap.
He refers to a work-related curriculum, with work placements beginning with a one day per week placement in the local community which might include shop-work, or placements in playgroups, plant nurseries, hotels, or homes for the elderly.
Alternatively, and for those students with greater difficulties, there are arranged “in-house” placements where the young people are involved in looking after the domestic arrangements, notably catering, with planning and preparing meals seen as a very valuable life skill anyway.
Meanwhile, the parents are kept fully involved in the planning processes and are made aware of the systems in hand. Their feed-back is a valuable part of the information by which to make further plans for life skill development and further work experience. Parental views are particularly relevant when it comes to determining the most appropriate placement where their son or daughter can gain experience of working in a sustained way and as a member of a team.
Lee then describes the appropriateness of a risk assessment for a given placement, and refers to the plant nursery placement where much of the work is done in a poly-tunnel. This may be light and roomy, but does tend to get cluttered with boxes and trays where the work is in progress. The decision was made to introduce a rule that all unused material is to be stored under the benches placed against the walls in order to minimise any risks of tripping over and any feeling of being closed in. A rest area is being planned so that the opportunity for discreetly supervised time-out will be available should anyone feel the need.
The students themselves were provided with a gradual induction to the work programme thus to reduce the significance of the transition from a purely classroom- based routine. One student known to experience anxiety at the prospect of any change was provided with a social story – shared with classmates - by which to attune to the new arrangement.
It was further decided to keep students on much the same task for a significant period in order to help them get used to the change of place and of style of working …. although, in the case of one student with limited concentration, it proved helpful to make some small switch in the precise task to be completed after about 30 minutes.
The completion of the tasks was modelled for the students, and visual reinforcement provided via picture strips and photographs.
Lee summarised the success of the work placement experience in terms of recognising how some potential employers were anxious about accepting students with ASD, even if a member of staff from the school would be on hand directly to supervise the student, and of respecting their decision to avoid becoming involved. Interestingly, gaps were taken up by two new employers who both had some direct awareness of special needs and who were further reassured by the provision of information about autism and about the particular profile of the students who were likely to be placed.
In other words, communication and open-ness in sharing information were the crucial factors; and Lee was able to conclude with a positive outlook towards the prospects of making and maintaining work experience placements for young people with autism.
Finally, but still on the subject of participation in community activities on the part of young people with autism, one notes the work of Taylor et al (2004) who recognised the desirability of this participation but also the issues about safety.
They were concerned that individuals with autism towards the more severe end of the spectrum should have the opportunity to make educational visits in the locality but recognised the need to provide some strategy for any student who might get lost. Accordingly, they set out to determine whether young autistics could be taught to respond to a pager by seeking assistance if they did become separated from the teacher or parent.
The three participants were students aged 17, 14, and 13 who all met the diagnostic criteria for autism, exhibiting significant deficits in language, socialisation, and self- care skills. The supervisors were familiar teachers and graduate students, while the community representatives were randomly selected by the participants and could have had no prior preparation.
The students were provided with a vibrating pager, to be worn on the rim of a pocket or waistband, which would vibrate for around 2 seconds when activated by the supervisor. They also carried a communication card providing the individual’s name, a statement explaining that (s)he was lost, and a request that the supervisor be called or paged.
Each trial involved four steps. On being paged, the student was to approach an adult, to say “excuse me”, to produce the card, and to wait with the adult until reunited with the teacher or parent.
To begin with, the participants practised by giving the communication card to a familiar adult in the school in response to being paged. Verbal instructions were given to ensure that the participant was aware of the desired response. The supervisor initially stood close to the participant and actively guided him or her to approach the nearest adult, and modelled/prompted the saying of “excuse me” and the handing over of the card.
Social and tangible rewards followed correct responses.
Subsequently, the practice switched to sites away from the school, with the supervisor arranging two teaching trials at each of two different places. The only difference from the initial practice was that, following the vibrating signal, the teacher would provide as small a prompt as practicable for showing the card to a nearby adult if the participant did not respond spontaneously within 30 seconds.
The final stage involved the supervisor’s keeping out of the participant’s sight with a reactivation of the pager after 30 seconds, if necessary; with praise and positive feedback given when the participant was reunited with the teacher.
The authors reported that all three participants learned to produce the card in response to the pager, both at school and in the community. They concluded that the results are encouraging in terms of ensuring the safety of individuals with autism when taken out of school into relatively unfamiliar settings, and that future work could examine an extension into the use of cellular phones by which directly to communicate with teacher or parent or to receive verbal prompts about how to seek assistance.
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M.J.Connor August 2004
Connor M. 2000 Asperger Syndrome (ASD) and the self reports of comprehensive school students. Educational Psychology in Practice 16(3) 285-296
Jordan R. and Jones G. 1999 Meeting the Needs of Children with Autistic Spectrum Disorders. London : Kingsley Publishers.
Lee C. 2003 Creating a work experience programme for students with autism. Good Autism Practice 4(2) 37-41
Simpson R. 2004 Finding effective intervention and personnel preparation practices for students with autism spectrum disorders. Exceptional Children 70(2) 135-144
Taylor B., Hughes C., Richard E., Hoch H., and Coello A. 2004 Teaching teenagers with autism to seek assistance when lost. Journal of Applied Behaviour Analysis 37(1) 79-82
© Mike Connor 2004.
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