AUTISM - CURRENT ISSUES 12
These notes begin with a description of a (small-scale) survey of teachers' beliefs and knowledge about autism, with implications for increasing in-service training as more children with special needs are included in mainstream schools.
Reference is made to a survey of a sample of parents which has highlighted the anxiety and family tensions which may be associated with having a child with autism, especially when this "invisible" disorder is not diagnosed early.
The issue of assessment and the role of the educational psychologist is discussed.
The final sections deal with "executive function" and components of attention, with the conclusion that "gross" markers for autism or Asperger syndrome, compared to other conditions, may not be readily identified; instead, characteristics of autistic spectrum disorders may be more subtle and multi-facetted.
M.J.Connor October 1999
In their introduction to a survey of parental opinions and experiences, Helps et al (1999) refer to the constant debate concerning the nature of autism, and the way in which this condition has been perceived and defined over the years since the term was first coined.
The range of different models of autism and the various theories of aetiology may underlie what are seen as widely differing beliefs about autism both within and between mental health professionals, parents, and the public at large. One implication is that the way in which the children are perceived and the way that supportive work is organised may vary according to the particular beliefs held. Meanwhile, there is evidence (Stone and Rosenbaum 1988) for continuing and significant misunderstandings among both parents and teachers of children with autism.
The present authors argue that the role and beliefs of the teacher are particularly significant given their close working with children during their early years and during those circumstances, such as close peer contact and changing environmental demands, when characteristic features of autism are most apparent.
The teachers' contribution will be critical in helping the children to develop social and communication skills; and one notes the consistent underlining of the need for early and appropriate educational intervention to aid the social and academic achievements of children with autism.
If there is to be increased collaboration between education and health professionals, there will be all the greater a need for a view of autism which is both shared and appropriate if the collaboration is to be effective.
Currently it is the policy in many local authorities to educate children with special needs in mainstream schools, and this would include children with autistic spectrum disorders for whom such provision is likely to be of particular benefit in respect of social learning. However, it is argued by Jordan and Powell (1995) that goodwill does not suffice to meet the needs of the children, but that the teachers need to be given specific training in order that they fully understand the nature of autism, the range of needs and behaviours that fall within this category, and are able to provide a flexible approach to teaching and learning.
The study by Helps et al (opp. cit) was designed to gain information about the training available to teachers of children with autism working in different types of school, and to examine the beliefs and knowledge among those professionals thus further to identify areas of need or inconsistent awareness.
10 schools for children with special educational needs and 8 mainstream schools in the South London area were sampled on the basis of their experience of working with children with autistic spectrum disorders. 8 schools agreed to take part and 62 teachers and 10 learning support staff participated in the completion of schedules, with mainstream schools and schools for moderate learning difficulty and emotional and behavioural disorder represented.
As far as the training of teaching staff was concerned it was found that only a very small percentage (5%) had specific guidance about autism in their basic teaching qualification and an equally small percentage reported access to later in service training. However, half of the special school teachers and 40% of support staff had received in-service training.
In respect of knowledge and beliefs about autism, the teaching groups had much less clearcut views than did mental health professionals. While the teachers recognised that autism is not curable and is not 'toutgrown", and that classroom organisation ( structure, predictability, explicitness of instruction ) is critical for the child's performance and behaviour, they nevertheless maintained important and inappropriate beliefs including the perception of autistic children as not having learning difficulties, the expectation that most autistic children will display special abilities or talents, and the categorising of autism as an emotional disorder.
Particular difficulties cited by the teaching staff included a lack of advice and support regarding the management of certain behaviour, and choice of teaching methods. Specific reference was made to aggressive behaviour and to social and communication difficulties. There was a strong implication among many teachers' responses of being left unsupported in that, for example, in response to being asked what further training would be helpful, a large number of the teachers (37%) replied that any training would be helpful!
As anticipated the next largest request (21%) was for gaining help in the management of the children with autism within the classroom containing mixed abilities.
There was also a frequent request for the opportunity to work alongside specialist teachers or to visit a school which provided specifically for children with autism. Access to guidance about the TEACCH programme or other particular packages was requested by a further percentage of staff
In summary the difficulties identified by this sample included...
A lack of knowledge about autism and lack of access to practical advice.
The obsessional or bizarre behaviour.
Aggressive and self injurious behaviour.
Social integration and peer relationship difficulties.
Motivation and self direction.
Resistance to change.
Poor levels of attention and concentration.
Staffing problems in terms both of limited resources and inconsistency about practice.
Unpredictability of behaviour.
In their discussion, the authors commented that the common tendency to view children with autism as not experiencing learning difficulty may well lead to some over estimation of the abilities of the children, culminating in some frustration on both sides, and perhaps a perception of failure and a feeling of confusion in the children.
Meanwhile, perceiving autism as an emotional disorder may also be unhelpful if this diverts attention from the developmental nature of the condition with implications for changes in the way that needs are presented (and in teacher strategy over time) even if the basic social and communication difficulties persist; or if it obscures the range of difficulties that may co-exist, of which affective problems are only a part.
Finally, there is reference to the marked differences among the teaching groups in respect of training, with the mainstream teachers receiving significantly less training about autism than others. The authors argue that this issue must be regarded as a matter of some urgency, and the present writer (MJC) would inevitably have to agree in the light of the continuing inclusive policy locally and nationally, the apparently increasing numbers of children identified with difficulties on the autistic spectrum, and the inevitable realisation that we are not going to make these children ordinary. Instead, it is necessary to focus upon the environment in terms of classroom organisation and task demands in order to maximise their progress and emotional well-being.
Inclusion must mean more than that the child simply attends his or her local school. There are implications not only for staff training but also for time for planning and liaising, for curricular content, and determining further ways of evaluating the performance or contribution of a school beyond the simplistic totalling of SAT scores or GCSE grades!
Parental Experience in the Diagnosis of Autism
The work by Midence and O'Neill (1999) begins with a reference to the considerable impact upon family life, as well as ongoing anxiety or guilt, if a child has autism. It is noted that problems are likely to be very long term.
It is reported that there has been little investigation of parental experience although one study using qualitative methods (Gray 1993) highlighted the difficulty of coping with an autistic child, and reported that the lack of verbal communication and aggressive or disruptive behaviours were found to be the greatest challenges to the parents.
The present authors identified families in the North Wales area known to have a child with autism, and 4 sets of parents took part in a survey conducted via interviews and semi-structured questionnaires. Reference is made to "grounded theory" as a method which sets out to explore how individuals link events or situations, and which attempts to make sense of ideas or information as they are presented.
The analysis of the responses identified six areas which were most significant to the parents. These were behaviour development, confusion, incorrect diagnosis, autism, support, and acceptance.
In respect of behaviour development, all parents described how the child's development was not as expected and that something different was observable in the child's performance. In particular reference was made to language, ritualistic or other problem behaviour, lack of eye contact, deficits in apparent general awareness, and sleep disturbance.
This kind of uncertainty appears to have developed over time to the point where parents were typically distressed because of their confusion over the nature of the child's manner or behaviour, and not knowing why the child behaved in these ways was said to be a particularly difficult and distressing situation. Guilt or self blame were common reactions; and difficulties (or even isolation) within the extended family were recorded.
In many cases parents reported incorrect advice or diagnosis, and in one case there was a reference to the blame attributed to the mother for the child's behaviour. Despite seeking professional help some parents felt all the more confused or lacking in support. One can understand, therefore, why the provision of a clear diagnosis of autism from a specialist brought about a sense of relief among most of these parents even if one family found it hard to accept the diagnosis.
The diagnosis removed the existing feelings of guilt or blame and was helpful to the family in providing a pointer towards actions.
(One particular problem highlighted was the invisibility of the condition in that the children looked entirely ordinary so that their unusual behaviours were not understood by other people, and sympathetic acceptance was not available as it might have been had the handicap been more directly observable).
A further and critical result of the diagnosis was the availability of support, in particular the access to practical advice from professionals who specialise in autism.
All the parents concluded that what was most important both for them and for the children was an acceptance of the condition and an adaptation of their lives in order maximally to include the children in the normal routines.
In their discussion, the authors highlighted those difficult early times when the parents are aware that the child has some problem which is significant but when advice or diagnosis are not available leading to anxiety or guilt in the parents. This in itself might further inhibit the ability or willingness to cope with the behaviours especially if other relatives or friends distance themselves from that immediate family grouping.
A clear implication is that parents need to know as soon as possible if there are problems even if initially an accurate diagnosis may not be possible .... but a firm diagnosis is desirable as soon as possible.
This further leads to the suggestion for greater awareness of developmental problems among young children on the part of health professionals, particularly family doctors who would probably provide the first point of contact.
This is all the more important in the light of the invisible nature of autism and the difficulty that parents may have in specifying precisely what are the behaviours that cause concern. A diagnosis brought about a sense of relief and the opportunity to begin to understand the child and to plan for the future.
It is acknowledged that the number of parents sampled in this study is small so that it may not be possible to generalise to a wider cross-section of families, but the feelings discussed are still compelling with strong implications for a generally wider understanding of the condition and for early diagnosis and support.
Educational Psychologists' Assessment of Autism
On the subject of diagnosis, one might note that, even if intervention is largely educational or behavioural, it appears necessary to await a medical diagnosis if autism is to be discussed with the family and plans shared..
One notes, however, the work of Waite and Woods (1999) who refer to a need on the part of educational psychologists to develop a more consistent role. It is pointed out that the psychologists do have a significant part in the procedure for identifying special educational needs; and they suggest that it would logical and helpful to develop a" whole profession view" , viz., a consistent approach to assessment procedures rather akin to the consensus which has developed over time in respect of dyslexia.
These authors go on to suggest that assessment should involve multi-disciplinary working within which the educational psychologist would appropriately be centrally placed. In any event, an agreed set of procedures for diagnosis would be a very helpful innovation. One implication may involve the greater training of educational psychologists in respect of assessment and intervention systems, and it may be appropriate that one or more psychologists within a team should seek to develop a specialism in this field, particularly if such individuals become a clearly-identified source of advice for parents or a central agency for the sharing of information among parents and various educational or health professionals.
(The present writer - MJC - would comment that such practice is already happening to an extent in the Surrey LEA, and it does highlight the increasing logic of developing specialisms, particularly in a field which is as potentially distressing or confusing as autistic spectrum disorder [ see the parental reports above ], and which current observations would suggest is dogged by a range of approaches to diagnosis or non-diagnosis).
Executive Function / Attention Deficits
Nyden et al (1999) describe how, in neuropsychological terms, "executive function" refers to those capacities, mediated by the frontal cortex, which enable a person to maintain goal directed behaviour and appropriate problem solving strategies. However, executive function appears to overlap with attention.
Meanwhile, within cognitive psychology, this concept appears to be used in much the same way as "metacognition", viz., the processes which select and control the use of cognitive strategies. This definition may appear somewhat loose and may be supplemented by "information processing" which splits executive function into particular elements such as choice reaction time, visual acuity, etc..
As a means of linking the two perspectives, Mirsky et al (1991) has suggested how attentional processes involve 4 separate components....
Sustain - the duration of an individual's response to a stimulus.
Focus/execute - selecting or attending to a particular stimulus.
Shift - the ability to switch attention.
Encode utilising working memory.
Coordinated actions of the 4 components, located in different parts of the brain, is involved in systematic attention.
The review of studies by Nyden et al (opp.cit) has indicated that some deficit in what has come to be called executive functioning is a feature of several conditions .... autism, Asperger syndrome, attention deficit disorder, and D.A.M.P. (deficits in attention, motor control, and perception).... all of which are specific syndromes although there is some overlap in respect of symptoms/deficits.
However, Pennington and Ozonoff(1996) review the field and hold that executive function deficits (and working memory impairments) appear more severe in autism than in attention deficit disorder.
The present authors set out to determine if there are specific deficits in attention within given modalities in three common disorders, namely Asperger syndrome, attention deficit hyperactivity disorder, and reading and writing disorder. A group of normally developing children provided a control.
Asperger syndrome involves inflexible behaviours and a slow problem solving approach. Accordingly, it was predicted that such children would be slower than other groups on reaction times, but might also produce fewer commission errors. Given the link believed to exist between good verbal ability and auditory attention, it was also predicted that there would be less impairment on those tests tapping auditory rather than visual skills. Children with attention deficit hyperactivity disorder show inattentive and impulsive behaviour, hence the prediction that they would be the most impaired group in any task involving attention whether visual or auditory.
The subjects included 4 groups, each of 10 boys between the ages of 8+ and 11+, all of whom had measured abilities falling into the average range. The reading and writing disorder group showed significant discrepancies between observed and expected achievement on the basis of age, general intelligence, and educational experience. The ADHD and Asperger groups were identified on the basis of DSM-IV criteria.
A range of measures were used to investigate sustain attention, focus/execute attention, shift attention, and encode attention.
The results showed that deficits in attention or executive function existed across all three groups of developmental disorders in that they could all be readily differentiated from the control group. However differences between the three deficit groups were relatively small when IQ was controlled.
All three groups showed specific as well as general deficits with perceptual attention and speed the most impaired component in all cases. Further observation showed that the ADHD children had difficulties in attention and fine motor skill ; the literacy disorder group had problems in attention and auditory memory; and the Asperger group had attentional deficits and reduced speed.
The hypothesis that the Asperger group's result would reflect a generally delayed reaction time was not supported; nor was it found that the results from the attention deficit group had reflected wider variation in performance. It was concluded, therefore, that all three groups shared a basic deficit in the processing of information. Modalities did not seem to be relevant in that the Asperger group was not slower in dealing with visual information, nor was the literacy disorder group slower in processing the auditory information.
All three groups scored poorly on the coding test which has a marked fine motor element, and it was the attention deficit group who showed the most difficulties on this test. Similarly, all the groups scored quite poorly on digit span; while the attention and literacy disorder groups performed poorly on a test of arithmetic which taps verbal working memory.
In sum, all the groups showed attention deficits involving the sustain, focus/execute, and encode components, while the attention deficit group also showed difficulties in the shift component.
It was, therefore, concluded that all the "deficit" groups had at least moderate, and perhaps severe, executive function or attentional problems, in which case it cannot be argued that executive function deficits provide a specific marker for any one of these currently examined disorders.
Theory of Mind
Work continues to gain an understanding of how theory of mind develops, and Peterson and Siegal (1999) have compared the performance of nine-year-old deaf children, nine-year-old children with autism, and four-year-old normally developing controls on a number of theory of mind activities.
It was found that those deaf children who could sign, those deaf children who had grown up with some access to spoken language, and normal hearing children performed at a similar level on the theory of mind tasks. Such children performed significantly better than deaf signing children from hearing families, and children with autism.
It was suggested that these findings reflect some neural basis for theory of mind. Alternatively, it was hypothesised that the opportunity for communication and for the exchange of thoughts concerning mental states would be most limited in the group with autism or in the group of deaf children from hearing families.
However, the review of studies completed by Martin (1999) demonstrates the continuing debate whether autism is a neurological disorder. Reference is made to the work of Happé et al (1999) who argue that right hemisphere damage will be associated with impaired theory of mind even if reasoning is not impaired, because right hemisphere damage impacts upon social behaviour and thinking in a way similar to that observed among children with a theory of mind deficits. What is not clear, however, it is where precisely in the right hemisphere the lesions occur.
Meanwhile, certain skills may be adequate or even advanced among individuals with autism. Such a skill is the visual search which was investigated by Ring et al (1999) using the embedded figures test where individuals are asked to find a simple shape contained within a more complex shape.
Autistic subjects could be differentiated from controls in respect of the patterns of brain activation in that pre-frontal cortex activity was observed extensively in the control group but not in the autistic group although this latter group did show increased activity in the occipitotemporal cortex.
It was argued that these different patterns reflect different cognitive strategies on the part of the two groups; for example, the autistic sample may engage in more careful visual examination of the stimulus, hence the greater activity in those brain locations linked to visual functions.
Martin (opp. cit) draws attention to the fact that the pre-frontal cortex has been implicated in autism because of the evidence that adults with autism have problems in completing executive tasks which depend upon frontal cortex functioning. However, it is reported that the situation with children is not so clear. For example, there is evidence from work with pre-school children with autism and control children that executive function tests do not discriminate between the groups.
This conclusion is neatly juxtaposed with the above section on executive function and attention deficits in that the authors conclude that "executive function" is not some unitary entity. Instead it involves a number of elements, such as working memory, flexible thinking, inhibition of behaviour, etc..
While Martin has moved some way from where his review began, he summarises the evidence to the effect that shifting ways of thinking, spatial working memory, and monitoring do not significantly discriminate children with autism from control children. However, it may prove to be the case that children with autism are significantly impaired on verbal working memory, planning, and the understanding of rules.
In other words, there is no overall, general deficit in executive function, but children with autism may be impaired in certain elements.
M.J.Connor October 1999
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© Mike Connor 1999.
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