AUTISM : CURRENT ISSUES 21
These notes begin with a further reference to the issue of the MMR vaccine, and the continuing evidence for no association between vaccine effects and autism or bowel disorder, although it appears that some doubts or anxieties still exist. Subsequently, there is a description of issues which may reduce the probability of full inclusion in a secondary school, coupled with a reiteration of the need for whole school approaches and individualisation of demands upon students with ASD. Finally, there is a description of research which examines the matter of theory of mind, and which highlights the significance of direction of gaze as a diagnostic indicator.
The Use of the MMR Vaccine
Despite the apparently compelling evidence concerning the benefits of the MMR vaccine and its safety, this whole issue continues to run both in the national press and in specialist publications.
A review article by Elliman and Bedford (2001) points out that there was an investigation in the early 1990s of the possible link between the use of the vaccine with children and the later onset of inflammatory bowel disease.
The Inflammatory Bowel Disease Group, based at the Royal Free Hospital, suggested that exposure to measles in childhood increased the risk of bowel disease in adulthood, but further research found no evidence to support this hypothesis. Subsequently, it was held (Thompson et all 1995) that measles vaccination might lead to an increased probability of bowel disease, but this study was subject to much methodological criticism and further evidence countered the suggestion of some vaccine-bowel disease linkage.
There followed the paper by Wakefield et al (1998) which returned to the theme of some association between MMR and not only bowel disease but also pervasive developmental disorder. The further suggestion was that the vaccine overloaded the immune system.
Since that time, there have been various studies (e.g. Taylor et all 999) which specifically set out to investigate this hypothesis, and consistent and converging evidence has been found to refute any association between MMR and these other disorders.
More recently, Wakefield and Montgomery (2001) put forward the claim that safety studies for the licensing of the MMR vaccine were not sufficiently sensitive to identify longer term effects, but this work was criticised for offering no new data, for inaccuracies, and for the bias in the information presented. In particular, there was said to be no reference to the study in Finland (Peltola and Heinonen 1986) which examined possible side effects of the vaccine and found no increased incidence of bowel disorders.
Elliman and Bedford (opp.cit) go on to describe recent and wide ranging review papers which concluded that available evidence offers no support for the view that MMR causes autism or associated disorders or bowel disease. In particular, reference was made to the hypothesis that toxins might seep through the bowel into the general circulation, but also to the range of specialists who asserted that this "leaky bowel" explanation was implausible in that any toxins would be filtered out before they could cause any negative impact.
The current authors conclude that there is no risk associated with MMR and no case for the use of single vaccines. However, it is recognised that some parents maintain an anxiety about the combined vaccine, and it is suggested that further emphasis is given to the large and consistent body of evidence which demonstrates the effectiveness of the vaccine based on research studies and upon long term experience of its use. Meanwhile, they refer also to the risks associated with single vaccines ... i.e. that children are not protected from all three diseases as soon as possible ; and, currently, single vaccines are unlicensed in this country. Further, at least two of the single mumps vaccines available are described as questionable in terms either of effectiveness or of some actual risk for negative side effects.
The concluding summary reiterates that there is no meaningful evidence to support a link between MMR and autism or bowel disease. There is, on the contrary, much evidence for the effectiveness and safety of MMR. It is the use of single vaccines which is untried and untested. It is recognised that parents should have the final say in this matter, but the advice from the current authors is that the evidence in favour of MMR is "overwhelmingly conclusive" so that health professionals should have no hesitation in recommending its use.
With particular regard to the issue of the alleged vulnerability of the young child's immune system, one might refer to the recent evidence cited in the national press (The Guardian 8 January 2002 : byline Sarah Boseley) that a baby's immune system could safely cope with many times the impact of the current MMR vaccine and there is no risk from the use of the combined vaccine.
The evidence in question comes from the journal Pediatrics (Offit et al 2002) and it is held that the immune systems of babies are capable of responding successfully to a vastly bigger challenge than the series of triple vaccinations. There is no support for any suggestion that multiple vaccines overwhelm or weaken the immune system. On the contrary, by providing protection against a number of bactcrial and viral pathogens, vaccines prevent any weakening of the immune system and subsequent secondary infections.
The authors argue that, from before birth, babies develop the ability to respond to a large number of antigens (molecules recognised by the immune system as foreign). They conclude that if multiple vaccines overwhelmed the immune system, it would be predicted that they would generate a less effective immune response in the child than when given singly; however, combinations such as MMR, or diptheria/tetanuslpertussis, give children as much immunity when given together as when given singly.
However, as indicated at the beginning of these notes, not everyone has been reassured by these findings, and there is a large number of court cases pending in the UK where families are alleging damage in their young children brought about by the MMR vaccine. Some medical professionals continue to express reservations or questions, including a criticism of the Finland study to the effect that over-reliance was placed upon doctors to inform the authorities when they thought that a child had experienced a serious and adverse reaction. This kind of passive surveillance may have led to an underestimate of difficulties, particularly as there was no suggestion about looking for symptoms of autistic spectrum disorder as side effects.
It is further noted that any reaction to MMR is not likely to be rapid or dramatic, but that regressive autism and bowel disorder are conditions which involve a slow process of degeneration, and the implication is that safety trials should have allowed a much longer time scale.
Secondary School Integration
The work of Barber (1996) is largely concerned with the question of supporting an able child with Asperger Syndrome entering a secondary school, but the present writer (MJC) was able to draw from this what are the general issues surrounding the management of ASD symptoms and averting (social) problems in the mainstream senior school.
It is stressed either explicitly or implicitly that problems are less to do with scholastic ability than with social skills or awareness of the (unspoken) rules of interaction. For example, a review held shortly after the student joined the senior school revealed that the shared concerns related to frequent interruptions during lessons, asking many questions which might or might not be appropriate. Further, he did not always pick up the message about when a conversation was over, but would tend to prolong the topic or come back to it a short while later. There were problems, too, with regard to his remaining in his place, or in his working within a group, all of which could have been interpreted by staff and peers as disruptive or attention-demanding rather than the outward signs of the weaknesses in social relationships, interaction, communication, and theory of mind which characterise autistic spectrum disorders.
All this reinforces the diverging view (as expressed, for example, by Aarons and Gittens 1992) that, while a student may have excellent intellectual capabilities, one has to recognise the considerable and wide-ranging handicap that will result from the absence of social skills. As young people pass through adolescence, social interactions and the associated cues and rules, become increasingly complex and subtle, and a lack of "street-wisdom" represents a major limitation.
(This point is reinforced by the comments of a journalist writing as the parent of two autistic children [Live and Learn. The Guardian 16 January 2002. Byline : Charlotte Moore] who recognises the excellent principle of mainstream inclusion, but who argues that towards the latter end of primary schooling, when "herd instincts" become strong, the social isolation of the children with ASD becomes fully revealed, and traumatic effects may follow if the child or young person simply attends the mainstream school but is a social misfit therein).
The implication is for ASD awareness-raising among peers and staff, and for specific efforts to teach or demonstrate social skills, and to provide opportunities to practise them in different settings, rather than assuming that these skills will develop automatically or incidentally. Children will not be "cured" of their ASD status, but one can organise the learning settings, set up social activities and club attendance during lunchtimes, and organise demands in such a way as to ensure that the needs can be accommodated and their effects minimised.
Further, Howlin (1988) argues that one might seek to include the children and young people in question by allowing time to work on their particular skills or interests, but this would involve a certain individualisation of the timetable. What matters is the willingness to recognise the probably uneven pattern of skills and abilities. A student may have high ability in music or maths or in any given area, and there may be an assumption that such skills will be matched by good or at least adequate skills in other areas, when, actually, this may not be the case. Problems may arise from inappropriate expectation.
In the same way, Taylor (1990) stresses that, whatever their level of ability, the young people with autism will continue to need direct teaching of a number of life and social skills which normally developing individuals will acquire unthinkingly simply as a result of increasing experience.
For example, she argues that these life skills underlying the ability to cope with day to day activities and routines are more important than any single academic skill. One must keep in mind that organisational ability, intuitive understanding of cause and effect, and the ability to make judgements, may be taken for granted in the majority of children and young people, but may be totally lacking among individuals with autism.
The students need to be taught what kind of behaviour causes problems in the classroom, and why; how to develop a greater social awareness; how to carry on a conversation; and the need to listen alongside talking and asking questions. In fact, repetitive questioning is seen as a common problem interfering with social acceptance and interaction.
Spence (1985) has introduced a system of checklists whereby a student determines which of a set of behaviours is a problem for him/her, while also highlighting where behaviours are acceptable at least or even positively adaptive. Identified problem areas are re-examined and discussions held why the behaviours concerned could be inappropriate, and the student is encouraged to verbalise why (s)he behaved in the observed way in a given circumstance, what effect the behaviour had on the teacher or other students, and what might have been done to control the behaviour. This kind of approach might be highly apposite for the students with ASD where the goal is to help the student to develop a more sensitive theory of mind in being able to appreciate how others view the behaviour and the impact it has on those others.
The general theme could be summarised as ensuring that all the needs of the students are considered, and that education is seen as encompassing a wide range of skills and knowledge.
Social Understanding: Eye Gaze as a Measure of Insight
This final section focuses upon a theoretical issue, exploring a particular aspect of theory of mind.
Ruffinan et al (2001) begin by reiterating that a weakness in theory of mind is a basic and defining characteristic among children with autistic spectrum disorder. However, they review a number of studies in which performance by control children on tasks of social understanding has been as impaired as that of children with autism.
Despite this apparently paradoxical set of findings, there is a common theme which the current authors perceive to have emerged, namely that the children are commonly presented with verbal theory of mind tasks, such as listening to a story or looking at a picture and being asked what a given character might do or think.
In contrast, other research has used behavioural measures and has examined more general social understanding than simply theory of mind, and it is with this kind of study that the particular difficulties of the children with autism are most evident.
Such children tend not to look at others' faces in order to share attention, nor do they tend to engage in gaze monitoring.
There is also evidence that young children with autism can be differentiated from control children with moderate learning difficulties in terms of their being less distressed by facial expressions indicative of distress or anxiety; similarly, the way the ASD children examine objects may be characteristic, and they tend to look more at objects than people, and to shift attention from objects to people less frequently than controls.
The implication is for a lack of "social referencing" in the children with autism.
A study by Clements and Perner (1994) used a verbal question and eye gaze as a measure of false belief understanding. Children listened to a story in which a character (Sam) placed a toy in place X and then went away, at which point another character moved the toy to place Y. The children were then given a prompt like "I wonder where Sam will look for the toy", and the children's eye movements were videotaped throughout to see if they anticipated where Sam would look by shifting their gaze to the appropriate place in response to the prompt.
It was found that children's gaze revealed an earlier sensitivity to belief than did their explicit responses, indicative of implicit knowledge of false belief.
In their own study, these present authors explored the use of eye gaze in differentiating between children with autism and children with MLD. The theory goes that normally developing children have a basic understanding of the social world which is partially innate and partially a function of their experience and interest in observing other people. With time and increasing language, the children are able to gain a conscious and verbally-mediated theory of mind.
Children with autism, on the other hand, may understand the social world differently. There is little of the initial implicit understanding, and there is a greater dependence upon specific teaching rather than incidental learning.
Implicit knowledge may serve an important function in underlying communication even if the child cannot verbalise or even think explicitly about what he is observing. The example is given of a 12 month old baby placed on the edge of a visual cliff and who might proceed or stay put depending upon the expression on the mother's face. If the mother looks anxious, the baby will not move : if she looks happy, the baby will crawl on. The baby does not need to understand the mental state involved , or verbalise his own feelings; it is simply a matter of reacting appropriately to the behavioural expression of emotion.
The study by Ruffinan et al (opp.cit) found that eye gaze was better than verbal performance at differentiating children with autism from children with MLD, within the age range 5 to 13 with a mean of 9 years. In the story task, the autistic sample did not look to the correct location in anticipation of where the character would look for the toy. In fact, the only measure that differentiated the two groups was the eye gaze measure, with the implication that even when there is no difference in the verbal performance of children with autism there may still be a fundamental lack of social insight in the autistic group. Children with autism lack basic and spontaneous insights of a kind observable in control MLD children, and are dependent on explicit theories gained through specifically controlled or taught experiences.
The authors concluded that eye gaze probably measures unconscious but core insights into social behaviour and is a better means of highlighting this particular characteristic of the autistic child. It is also noted that the least efficient use of eye gaze was a valid indicator of the most severe form of autism.
M.J.Connor January 2002
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© Mike Connor 2002.
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