Children on the autistic
spectrum: Guidelines for
Gradually, pupils with autism or Asperger syndrome are being included in mainstream situations. Michael Connor presents a set of guidelines for practitioners unfamiliar with these conditions. The detailed strategies are not intended as a blueprint but provide a useful body of information for constructing school-based strategies.
With the momentum for (mainstream) inclusion of children with special educational needs and the growing realisation that it may not always be in the best interests of children with autism or Asperger syndrome to be grouped together in classes, it is likely that many children at the higher functioning and more verbal end of the continuum of need, who might previously have attended specialist schools, will now be educated in their local, mainstream schools.
These notes are intended to provide co-ordinators, class teachers, and classroom assistants with information concerning the nature of autism, and how autism and Asperger syndrome are compared and contrasted; estimated incidence, and theories of causation; methods of identification; the particular behavioural, cognitive and social profiles of children with autistic spectrum disorders; and strategies for management in class.
The term 'autism' was first used by Kanner (1943) to describe those children who display marked solitariness and an inability to relate to others, an obsessive desire for sameness and an insistence upon repetitive activities, and poor language development.
Autism is characterised, therefore, by three types of disability:
A useful summary is provided by Wing (1988a), who refers to the Triad of Social Impairments, namely impairment of social recognition, of social communication, and of social understanding and imagination. However, it is important further to note (Wing 1998b) that, while all children diagnosed as having an autistic spectrum disorder will display behaviours reflecting these three areas of difficulty, there will be considerable variety in the way the triad is manifested.
The Maudsley Study (Rutter 1966) noted that autism could be further differentiated from other childhood disorders by the presence of a particular type of mannerism involving finger or whole-body movements, of self-injurious behaviour, and of poor concentration (or non-distractibility from a preferred activity).
Identification may be guided by nine diagnostic points (Creak 1961):
Asperger syndrome (first described by Hans Asperger in 1944) has been viewed either as a less severe form of autism, or as a separate condition in its own right, but is unarguably part of the autistic continuum. The characteristic signs and behaviours include marked and sustained impairment in social interaction, restrictive and repetitive patterns of behaviour and activities, and a strong preference for routines and avoidance of change. Motor delays or clumsiness are commonly associated with this condition. However, compared to autistics, individuals with Asperger syndrome often have adequate expressive language, may have cognitive scores which fall in the average or above-average ranges, and rarely experience additional learning difficulties, such that diagnosis may be delayed until the difficulties in social relationships and interaction become evident. Diagnosis commonly occurs after the age of five.
Criteria for the diagnosis of Asperger syndrome, suggested by Gillberg (1988), would include the following:
The concept of a 'continuum' of autistic disorders (Or 'autistic spectrum') highlights the range, in terms of number or severity of symptoms, that individuals may experience. At one extreme, there are children who require very specialist care and provision which will necessarily continue into adulthood, and, at the other extreme, there are children who can successfully and meaningfully be included within a mainstream school. The implications are for individual assessment and intervention-planning, and the avoidance of making assumptions or generalisations about the behaviours, skills, and prognoses of individuals who share the autism or asperger diagnosis.
For 'classic' autism, the estimated prevalence rate is around 5 per 10,000. The estimated prevalence rate of autistic spectrum disorders, including Asperger syndrome, is over 90 per 10,000 in the United Kingdom. It is possible that this is an underestimate, since Asperger syndrome is not easily recognised, or it may be confounded with other (neurological) disorders such as attention deficit disorder, obsessive-compulsive disorder, or oppositional-defiant disorder. It is the view of Gillberg (1998) that such a figure does underestimate the true incidence of autistic spectrum disorders. He accepts that an apparent increase in the incidence may reflect greater awareness of the conditions within the spectrum, and greater reporting, but it is still his belief that there has been a real increase in the occurrence of spectrum disorders in the recent past, to the point where the rate is more like 5 per 1,000.
Approximately four times more boys than girls are affected by autistic spectrum disorders, although this may be a false ratio because the more verbally and socially mature 'style' characteristic of girls may mask symptoms which would otherwise lead to a diagnosis of autistic spectrum disorder (somewhat analogous to the way in which attention deficit disorder may not be readily recognised in girls in the absence of the hyperactivity component which is commonly a feature of attention deficit disorder among boys). It may even be argued (Gillberg 1992) that Asperger syndrome represents an extreme version of typically 'male' behaviour, or that the pattern of behaviours thought typical of autism has been derived from the male prototype.
There is no certainty concerning the causes of autism or Asperger syndrome, but reviews of studies suggests that a common link among aetiological theories is some organic basis of autism. The developing nervous system (notably the brain stem, which regulates attention and arousal) may be adversely influenced at a very early stage by the effects of a variety of conditions such as maternal rubella, tuberous sclerosis, lack of oxygen at birth, whooping cough, allergies or measles.
It may be argued that the organic damage leads to underarousal (Rimland 1964), or to overarousal and that behaviours characteristic of autism are designed to protect the individual from overstimulation (Hutt and Hun 1965). The (claimed) benefits associated with holding therapy or with auditory integration therapy may provide some support for the latter view in that both these forms of intervention seek to reduce an oversensitivity to sensory stimulation: touch and sound respectively.
Genetic factors appear significant but the sites of the relevant genes have not been pinpointed. Metabolic abnormalities, or mineral and vitamin deficiencies, may also be implicated among contributory causal factors.
No significant evidence exists for psychogenic theories (such as those ascribing some lack of attachment or bonding - 'emotional refrigeration').
Despite the considerable publicity afforded to the hypothesised link between autism and the measles, mumps and rubella vaccination, no evidence supports the hypothesis, and the research appearing to support this link has been much criticised for methodological flaws.
Nevertheless, some current hypotheses of the aetiology of autism continue to link inhibition of the development of the immune systems of the body with an impact upon the central nervous system, and an influence upon behaviours and emotional expression, producing symptoms characteristic of autism. Issues under investigation include prenatal viral infections, fetal intolerance to maternal antibodies, imbalance in brain lateralisation, excessive concentration of certain transmitter substances in the brain, or excess levels of testosterone. However, conclusions can only be tentative in the light of limitations or variations in the number of cases studied, the diagnostic criteria across studies, the age and sex of the children studied, and other factors.
The key means towards (early) identification of autistic spectrum disorder is that of structured observation supported by the use of checklists which will focus particularly upon the development of social skill and communication.
Diagnostic measures include the following:
General developmental screening
Although they are not designed as a means of identifying autistic symptoms, many of the scales used for routine infant screening contain sections concerning social relationships and language and may provide valuable initial 'pointers'. Examples include the Schedule of Growing Skills (Bellman and Cash 1987) used among children up to 5 years, or the Vineland Adaptive Behaviour Scales (Sparrow, Balla and Cicchetti (1984), which can be used with children and young people from early infancy to adolescence.
Screening for autistic symptoms
Tools for screening for autistic symptoms include:
Rating scales for autistic behaviour
Rating scales for autistic behaviour include:
Much of the behaviour characteristic of autism may reflect a deficit in 'theory of mind' (see Baron-Cohen 1998), in that the individual cannot readily appreciate the feelings, knowledge, or beliefs in other people (nor fully recognise or interpret his or her own thought processes). Hence there will be stilted language interaction, a lack of self-consciousness, and weakness in understanding social situations that is, problems in social communication.
A typical test for theory of mind may involve arranging for a child to observe a situation such as the following:
A girl puts her toy into a box. She then leaves the room. Her brother moves the toy to a drawer The girl returns and wants her toy back.
The child is asked where s/he thinks the girl will look. Typical 4 year-olds will realise that the girl does not know that the toy has been moved, and will expect the girl to look in the box; but the child with autism will refer to the drawer, and demonstrate an assumption that another person's knowledge, or perception, or belief, will be the same as his/her own.
The deficit in theory of mind will also underlie some problems in communication, in that much day-to-day conversation will depend on an awareness of the other person's point of view, an appreciation of what that other person already knows about the topic (or ensuring that it is clear what the topic is in the first place). Communication may also break down if the speaker fails to recognise signs that the 'victim' is becoming impatient with repetitive questioning, or that s/he has not recognised to what the speaker is referring.
Similarly, normally developing children as young as 12+ months may be sensitive to another person's attentional state, in that they can recognise what is the focus of interest. Sharing attention upon the same object is a major step towards meaningful interaction. However, children with autism commonly show a marked delay or disability in developing this kind of sensitivity. There is a similar insensitivity to the feelings or emotions shown by another person.
Jordan (1997) reinforces the significance of social skill deficiencies which may be masked by superficially good verbal expression, but is reflected in problems with pragmatic language linked to an assumption that the listener will understand the significance of what is being said and will be able immediately to identify the topic. Once again, the deficit is in mind-reading.
Linked to the above is the concept of 'meta-representational deficit', which describes a situation where the child cannot hold two conflicting ideas simultaneously. For example, if an object is to be used as a 'pretend' for something else -say, a cardboard tube for a telephone - the child must have a clear idea of what a telephone is and can recognise that the tube and the telephone are quite different objects (decoupling). The child with autism does not engage in this kind of symbolic play because of an inability to make these representations and then to decouple. There is no capacity to cope with mental states such as (suspended) belief, or pretence.
'Stimulus overselectivity' refers to responding to only part of a stimulus, rather than to the whole thing or the whole social setting, with implications for an inability to maintain 'multiple attention', or for stress resulting from over-stimulation. There is evidence (Pierce, Glad and Schreibman 1997) that a particular weakness exists in respect of perceiving or processing social information - that is, co-ordinating cues from facial expression, body language, tone of voice - and that children may be able to recognise and remember what happens in observed situations or person-to-person interactions, but be unable to recognise how the persons felt or why they reacted as they did.
A limitation in 'central coherence' implies an inability to use context or to generalise from one task or setting to another, and further highlights the tendency to attend to single elements of a stimulus or to fail to see the whole from the sum of the parts. As noted by Happé (1997), the child will have difficulty in using context to extract the meaning from sentences that could be ambiguous - as illustrated, for example, by mispronouncing 'homographs' (words which share spelling but differ in meaning and pronunciation, such as 'lead' or 'tear') as a result of an inability rapidly to scan the rest of the sentence. Similarly, reading comprehension may commonly lag behind reading accuracy.
There may be an inability to make any meaningful mental representation of the world around oneself such that each experience is 'discrete' and no overall pattern is perceived. The implication is for a failure to plan ahead, or to see the relevance of skills or knowledge gained in one setting for a different setting, with a corresponding need for a clear structure, routine, and clear feedback to help the child to learn to recognise cues and clues towards self-organisation. Further, s/he will not be able to take advantage of what is happening in the immediate environment; there will be no incidental learning (taking advantage of the comments or responses of other children in the group or class). This is a fundamental point, and one should emphasise the need never to take understanding for granted with the autistic child. It is necessary frequently to teach the autistic child routines or behaviours that other children acquire with minimal prompting.
Weaknesses in communication may be explained at least partially by a lack of 'gaze monitoring'. Pragmatic language, vocabulary development, and shared attention all assume that the speaker and listener are focusing upon the same thing, and a significant strategy for the listener is that of checking what the speaker is looking at. Such a strategy appears to develop spontaneously in young infants, but an absence of joint attention by around 18 months is a strong diagnostic indicator for autism.
Literalness of language usage implies that nothing can be taken for granted in the autistic child's response to instructions. For example, if requesting a boy with autism to ask his mum if she wants a cup of tea, one would need also to tell him to come back with the answer.
Concreteness highlights the likely problem in developing (imaginative) play in that objects are not used as representations of something else: a cardboard tube is a cardboard tube, not a telescope. The purpose of games, such as playground football, may not be appreciated, and the use of coats for goalposts would be very puzzling.
Intervention and management
Among preschool children, or in specialist schools and centres, the range of treatment approaches serves to demonstrate the range of needs, and levels of need, among children all legitimately described as having autism or Asperger syndrome. Such approaches include behaviour modification (early intensive intervention as described by Lovaas and his associates, 1957), dietary treatment (commonly vitamin or mineral supplementation - especially vitamin B6 and magnesium -designed to normalise metabolism), auditory integration therapy (designed to reduce sensitivity to particular sound frequencies), music therapy, and scotopic sensitivity treatment
Specialist teaching approaches include Treatments and Education of Autistic and Related Communication-Handicapped Children (TEACCH; Schopler 1997), which stresses the need for structure, elements of behavioural and cognitive interventions, direct teaching of chosen skills, and the use of visual cues to highlight tasks to be done, and work or play areas. Structure, Positive, Empathetic, Low Arousal, Links (SPELL) is the basic methodology in many of the centres run by the National Autistic Society, and the above components also underline how the fundamental need among children with autistic spectrum disorders is a clear routine, and specific help to generalise what is learnt from one setting to another, in an atmosphere in which one seeks to maximise positive relationships and reduce child anxiety by seeking to perceive or anticipate which settings or experiences may be threatening.
Other specialist approaches include the daily life programme provided in the Higashi schools, facilitated communication, the Picture Exchange Communication System, and the options approach (Son Rise). It should be stressed that these approaches are relevant to schools which provide specifically for children with (relatively severe) autistic spectrum disorders, and would not be routinely available for children placed in mainstream schools.
However, it may be increasingly the case that elements of various approaches are tried in a range of permutations and that mainstream provisions can be augmented by importing some additional strategy - for example, the combination of intensive behavioural treatment with admission to nursery or infant schooling. Another example (Whitaker, Barratt, Joy, Potter and Thomas 1998) is the use of 'Circles of Friends' to support and enhance integration of children with autistic spectrum disorders within mainstream schools and to foster social interaction with a wider peer group.
Meanwhile, the description of the integration of an able boy with Asperger syndrome into a local comprehensive school (Barber 1996) highlights the critical issues of social skill development, and staff awareness of the particular style, behaviours and uneven scholastic profile associated with the syndrome, thus to ensure maximal consistency of approach and an understanding/tolerance of what might appear to be difficult or aggressive behaviours.
In this context, it is relevant to note, too, the critical importance of involving parents as early as possible in any intervention. For example, the National Autistic Society Early Bird Project is designed to enable parents to appreciate the needs of the autistic child, to understand the significance of the observed behaviours, and, thus, to modify the setting and demands on the child to maximise progress and development.
In particular, as highlighted by Howlin (1998), the 'traditional' means of analysing 'difficult' or 'disruptive' behaviour through the A~BC approach (examining antecedents, the actual behaviour, and the consequences) will not be appropriate for use with children with autistic spectrum disorders since, even more than is the case with non-autistic children, it may be very difficult to appreciate if or how the children themselves perceive antecedents or consequences. The sequence as perceived by the adult observer may be wide of the mark. Instead, Howlin advises that one should work towards understanding what a given behaviour is intended to achieve for the child:
Given this awareness, one might teach the child some other way to express his/her needs, perhaps by the use of symbols or pictures.
A common theme is that of seeking early intervention, with implications for rapid recognition of autistic signs and symptoms, and major goals for research are the identifying of particular characteristics in the child or context by which to select the programme most likely to be effective and determining how to generalise behavioural or social or educational gains from the treatment setting to other settings.
It has to be accepted that there is no cure for autism or Asperger syndrome. However, individualised education programmes and structured support can maximise the child's progress, reduce pressure and stress upon the child and the rest of the family, and minimise the incidence of behavioural problems among children whose needs are not at the severe end of the spectrum and who can be included within mainstream schools.
Classroom practice with those children admitted to mainstream school must take into account the following issues;
Basic strategies (acknowledging the overlap between the following categories)
Behavioural and 'social' management
If resources are available, it should be recognised that it is helpful for the child with an autistic spectrum disorder, and for other members of the class, if s/he is occasionally taken out of the classroom so that activities can be undertaken without distraction (both by the individual child and by the peer group).
Meanwhile, the general diagnostic category of Asperger syndrome or high functioning autistic must not be allowed to obscure the range of needs that may exist among the children so-labelled. The implication is for individual assessment and educational programme planning to match an individual's profile of strengths and weaknesses and style.
It is probable that the children in question will not take any advantage from counselling or from activities such as circle time. Instead, one may need constantly to monitor the context to identify possible sources of uncertainty, or peer-interaction problems, which could lead to stress, and try to establish an enhanced tolerance of the observed behaviours and style by ensuring that all staff, including assistants, are aware of the nature of autism or Asperger syndrome.
Liaison with other professionals (educational psychologist, speech and language therapist, paediatrician) as well as parents should be maintained in order to monitor progress following a baseline assessment of social, communicatory and scholastic performance; to share the process of interpreting behaviours and identifying triggers for negative or anxious episodes; and to gain access to particularly helpful resources such as the Social Use of Language Programme or Playscripts.
In the present writer's own educational authority, the recently established consultative groups for special educational needs co-ordinators, class teachers, and special needs assistants, working with children with autism or Asperger syndrome, have provided a means of sharing information and strategies for dealing with particular issues. Given the range of needs and learning styles and levels even among children all legitimately diagnosed with autism or Asperger syndrome, it is valuable to maintain these local groups of teachers and classroom assistants (led by educational psychologists and speech therapists), where there can be a sharing of experiences and of approaches initiated, and a mutual development of expertise.
In conclusion, it is appropriate to reiterate that a diagnostic label of autism or Asperger syndrome does not point to some simple or unitary system of management; rather, it is a matter of selecting a range of educational and behavioural strategies in an individual permutation in order to match, as far as possible, the needs of the individual child.
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Mike Connor Chartered Educational Psychologist.
© Mike Connor 1999.
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