AUTISM CURRENT ISSUES 5

This paper comprises a summary of the (observable) characteristics associated with a failure to develop an adequate Theory of Mind.

There follows a set of guidelines concerned with the nature of presenting educational and behavioural difficulties among autistic children in a classroom setting.

Reference is then made to bio-medical interventions in Autism, and the underlying implications concerning defects in metabolism and neurotransmission as possible aetiological features of Autism.

Finally, some (personal) commentary is offered about a recent tribunal case where the appeal by the parents concerned funding for enhanced access to intensive behavioural intervention of a Lovaas type.

M.J.Connor August 1998

Theory of Mind

Theory of Mind" is the ability to infer, in other people, a range of mental states, such as beliefs, desires, intentions, imaginations, and emotions

The following notes are a summary of the general review of this field as presented by Baron-Cohen (1998) and, while the issues may have been set out in previous papers concerned with Autism, it may be helpful to bring together the various components and implications of Theory of Mind.

Baron-Cohen argues that some difficulty or abnormality in understanding other people's points of view is not the only psychological feature of the autistic spectrum, but it is the core feature and appears universal among individuals with Autism. At one extreme, there may be a total lack of any theory of mind, a form of "mind-blindness". More frequently, autistics may have some basic understanding, but not at the level that one would expect from observed abilities in other areas.

The capacity to differentiate between mental and physical "events" is seen as a fundamental part of theory of mind.

A typical test of the capacity involves the child listening to a story in which one character is having some mental experience... such as thinking about a dog, and another character is actually holding a dog... a physical experience. The child is then asked which of the two characters can perform given actions, such as stroking the dog. Children of 3 to 4 years can readily make the right response, i.e. recognise that only the second character can actually touch the dog; but children with Autism have difficulty in making such judgements.

Children of 3 to 4 years also can usually recognise that the brain has a set of mental functions, such as thinking, dreaming, etc., and that it also has physical functions, such as controlling movement.

Children with Autism, even with measured ability well above a 4 year level, generally fail to recognise (or to mention) the existence of the mental functions.

Children of about 4 years old and above can normally distinguish appearance and reality. Baron-Cohen cites the example of a candle which has been made in the shape and colour of an apple. It looks like an apple, but it is actually a candle. Autistic children would be likely to see the object either as a candle or as an apple, and would not be able to accept the dual identity. There is a lack of ability to keep track simultaneously of two ways of perceiving an object (with implications for possible problems resulting from inadequate language skill to cope with this kind of situation).

What is assessed in such tasks is whether or not there is an understanding that different people can have different thoughts about the same situation.

By the age of 4+, children can recognise how other people may interpret a situation. For example, in the story of Red Riding Hood, they know that it is the wolf in the bed but also understand that Red Riding Hood believes that it is her grandmother. Studies have consistently demonstrated that children with Autism have problems in being able to see what another person might believe. Instead, they assume that what they know is what everyone else knows.

Baron-Cohen holds that another fundamental past of normally functioning theory of mind is the awareness of where knowledge comes from, so that one can work out who knows what and who doesn't know what.

For example, children of 3+ given a story about one person who looks inside a box and another person who only examines the outside of a box will recognise that only the first person will know what the box contains. Children with Autism seem unable to make this kind of judgement.

By the age of 4 years, most children can recognise, from a list, those words which refer to what occurs in the mind such as "think ; know; dream; etc. ". They can also distinguish such words from non-mental verbs or nouns... such as "jump; eat; school; door; etc. ".

Children with Autism have much more difficulty in making this kind of selection.

Autistic children, compared with normally developing controls, produce fewer mental state words in their own spontaneous speech when describing picture stories involving action and deception.

Observations have consistently demonstrated a limited frequency of imaginative play among children with Autism. This might reflect a difficulty in acting upon one's own ideas, or an inability to switch attention from "pretend mode" to "reality mode".

While emotional reactions can be linked to physical events (such as falling over and hurting oneself), they can also be linked to mental states such as wishes or beliefs such as getting what was wanted (or even thinking that one is getting what was wanted). By the age of 6 years, normally developing children can understand these 3 different sources of emotion, but autistic children of a similar mental age have difficulty with the mental states as causes of emotion.

By looking at another person's eyes, or by monitoring what it is that the person is looking at, one may gain an insight into what that person is thinking about or which one of several objects (s)he wants. Meanwhile, a gaze that is directed upwards but at nothing in particular would suggest that the person is deep in thought. Children with Autism appear unable to use these cues, even if they can answer the direct question .. "What is N. looking at?"

Unlike normally developing 4 year olds, a child with Autism will confuse intention with outcome. Baron-Cohen gives the example of children shooting with toy guns at one of several targets, having stated which one they are aiming at. The outcomes could be discreetly manipulated by the experimenter so that, sometimes, the chosen target was hit, and sometimes not.

The ordinary 4 year old could correctly answer the question... "Which one did you mean to hit?" ; but it was commonly found that children with Autism answered, at every trial, by citing the one actually hit.

4 year olds usually show some skill at deception.. i.e. seeking to manipulate what is in someone else's mind (and, therefore, recognising that there may be a [created] view which is disparate from the real situation).

They may claim, for example, not to have eaten some biscuits, and seek to hide the empty packet.

The autistic children have difficulties both in producing any deception, and in understanding when somebody is trying to deceive them.

Examples of figurative speech include sarcasm ("Your room looks really tidy"), and metaphor ("She has a sharp tongue"). Normal eight year olds will understand what is meant, but higher functioning autistic individuals will commonly fail to do so.

Meanwhile, a problem in using language pragmatically may be a function of mindreading weakness, in that the individual with Autism may not appreciate what the other person already knows or does not know, will fall to take his/her turn, or will not recognise what is the right thing to say in a given context, etc..

It is a matter of insensitivity to the mental state of the partner in the developing ( or non-developing) conversation.

Baron-Cohen repeats in his conclusion that difficulty in mindreading is consistently observed among those individuals with autistic spectrum conditions, and that this characteristic may be observed at a very early age.

Meeting Special Educational Needs of Pupils with Autistic Spectrum Disorders

A comprehensive review of the particular difficulties experienced by pupils with Autism or Asperger Syndrome has been compiled by Jordan (1998) who begins with an acknowledgement that the triad of impairments which characterise Autism will also apply to Asperger Syndrome, but that the Asperger pupils have particular problems in respect of (not always fully recognised) social skill deficiencies.

Such deficiencies may be masked by superficially competent language development, but the apparent capacity for verbal behaviour is at odds with problems in pragmatic language and in "mindreading" (i.e. the individual will assume that the other person will be able to understand him/her and that (s)he will have a similar awareness of the topic in hand ) such that true 2-way communication is impaired.

The following notes are a summary of the main points set down by Jordan, ( with "AS" used to signify autistic spectrum).

It is noted that the current fashion in Education is to avoid some (in-child) diagnosis, and to focus on the child's interaction with the learning environment, but Jordan argues that one can only begin to address the special educational needs of a pupil with an autistic spectrum disorder if there is an understanding of the basic, underlying difficulties. Responding at the overt behavioural level may lead to unhelpful or even damaging interpretations of needs.

Again, the critical issue cited is that of Theory of Mind, whereby pupils do not simply fail to understand what other people are thinking or feeling, but do not recognise that these other people do think or feel at all.

Given this delayed or absent skill, the AS pupil will have particular difficulties in:

The basic issue is a possible failure on the part of the AS pupil to know what is the right or comfortable space between self and others (or stress generated to the AS individual by invasion' of his private space, albeit extensive).

Social skill training may help in respect of appreciating appropriate social distance, but teachers may need to be aware that their presence, however well intentioned, may be threatening and cause a reaction.

Many AS pupils do best in a more formally organised classroom where free movement around the class is limited; alternatively, dividing the classroom into clearly marked areas can be reassuring for the AS pupil.

AS pupils may find various sources of stress in busy classrooms, and a basic goal for teachers is to identify particular stress triggers for a given pupil and thus avoid them or work with the pupil towards desensitisation.

Similarly, one would seek to minimise distractors, especially those which relate to the pupils' obsessional interest(s).

Meanwhile, it should not be assumed that the child will learn effectively in a group, but (s)he may need to be shown how to take advantage of the situation. Further, it may be that the AS pupil has needs which are sufficiently marked as to make it very difficult for the teacher meaningfully to include him/her into a whole-class lesson or even readily to address those individual needs while responsible for catering for all the rest of the pupils. In this situation, classroom support is critically necessary to ensure that classroom activities are constantly modified or translated into a form appropriate for the individual;

The main issue here concerns the apparent "double standards" which may operate. In other words, the AS pupil may not benefit from having to participate in certain activities and may be given some "licence" in certain situations, but other pupils in the class may resent the apparent opportunity given this pupil to "get away with it,,. The implication is for sharing, with due tact, the nature of autistic spectrum disorders with peer groups, and for working with the individual pupil towards a shared understanding of what is and is not acceptable in a classroom setting, and some system for communicating when behaviour is approaching the unacceptable point.

Obsessional interests may interfere with classroom learning, but can also be used as a means of entry to some particular study area; alternatively, time to be spent on these special interests can be used as a reward for the completion of other work. Meanwhile, the existence of particular "islets" of ability needs to be interpreted with caution... notably to ensure that it is not assumed that some high level of knowledge or skill in one area will be matched by similar levels in other areas.

It needs also to be recognised that the AS pupil may have problems in knowing what is important and what can be ignored, or in focusing upon "foreground" information, such as the teacher's voice, against the visual or auditory classroom background.

It is usually the case that support is focused upon in-class activities. However, the AS pupil's problems in making choices may be equally or more relevant in the more unstructured settings, and the transitions between activities or between lessons can be threatening. All this is the more critical when it is recognised that the AS pupil may not be able to express his/her anxieties (and may not even realise that others do not know that he is anxious). In particular, teasing and bullying may be increasing problems as the AS pupil moves into the secondary school.

AS pupils may have a particular problem with semantics, or with subtle uses of language; nor should it be assumed that they have the ability to recognise changes in the speaker's tone of voice. Significant bits of information may, therefore, be lost, and understanding should not be taken for granted.

The AS pupil may appear verbally competent, but may not be able to recognise all the cues that are necessary for full communication, such as tone, body language, facial expression, etc., and may need to be taught to become aware of these features.

In respect of written language, the advice is that teachers should check whether comprehension and understanding of material read are adequate, since some AS pupils have a reading accuracy level considerably ahead of their comprehension level. Further, it is possible that Dyslexia can be a problem in its own right among AS pupils but it may be the case that, having acquired an Asperger/Autism diagnosis, the individual's additional and specific learning difficulties are insufficiently appreciated.

An AS pupil's understanding of a topic, or general progress, will not be aided by the use of sarcasm or by the use of metaphors. One needs to be aware of the AS pupil's tendency towards literalness. Similarly, care will be needed in how one phrases questions or instructions. A request in the form "Would you like to draw me another diagram like this? " might simply invoke the response "yes" ( or "no").

In the same context, AS pupils may not easily see why teachers frequently ask the class questions to which they already have the answer, and they adopt this behaviour as a model for their own repetitive questioning.

Given the problems with mindreading, there may be anxiety generated from an uncertainty about other people's (perceivedly ) unpredictable behaviour; and the implication is for time specifically designated to teach the individual about Theory of Mind and about drawing inferences from what is observed.

Similarly, the AS pupils may require specific help in recognising and controlling their own reactions to other people... a form of desensitisation ; and frequent opportunities would usefully be sought for "non-social" ways of teaching the curriculum, notably computer-assisted learning. Further, the pupil may need to be explicitly taught the skills of collaboration in group learning activities, since such skills are not likely simply to be picked up. The AS pupils may learn a great deal by imitation, but they do need to be taught to imitate (and peers to tolerate the process). They will also need direct teaching in respect of what is involved in "friend" behaviour, while particular groups of peers might usefully be encouraged to spend time with the AS pupil in the potentially difficult break and lunch-time periods.

Symbolic and pretend play is usually of a basic or stereotyped form and interaction is limited. Imaginative play should, therefore, be encouraged and modelled, and role play taught and practised thus to gain further social and language skills. It is commonly the case that AS pupils will be made anxious by any changes to routine. Anxiety may be reduced if the pupil can be given some advance indication of likely changes to routine or if all bits of a school day (or even individual sessions) can be represented on cards which are displayed prominently, and the pupil allowed to shift the order thus to become accustomed to the prospect of change and more able to accept changes.

Rigidity may also be a problem when it comes to generalisation of newly learned skills in that AS pupils may need to have practice and experience of such skills in different settings and contexts as opposed to associating some particular bit of learning with a specific setting or teacher.

It is assumed that most self injurious behaviour (and tantrums and aggressiveness) is an immature attempt at communication, and that what the AS pupil is trying to communicate is his/her anxiety or stress at some circumstance which is not evident to the onlooker.

The implication is for seeking to identify the trigger to the stress and also what is providing the reinforcement to the kind of behaviour observed. Once one has recognised what is the communicative intent of the behaviour, it will become possible to teach the pupil alternative ways of expressing the message.

In general, one might look for some lack of structure, the possibility that the AS pupil is not always fully aware of what to do or where to go at any given time, or that there is some lack of certainty about the sequence of events or what will happen next. The advice is that, if all this "detective work" does not produce answers, one might focus upon the pupil's physiological state and try introducing a period of vigorous exercise as a means of regulating/reducing the reactions observed.

A general implication behind all these issues is that the pupil with a disorder on the autistic spectrum will require an individualised plan which may not be readily dovetailed with the customary demands of the National Curriculum. Jordan cites, for example, the desirability of placing a high priority upon social and personal education, and upon the logic of limiting curricular access.... noting especially the questionable value of access to certain academic subjects such as Modern Languages or Geography, etc., if problems with behaviour and social understanding are going to handicap the pupil far more than a lack of some academic experiences or qualifications.

Jordan concludes by referring to the whole question of the intention to learn and metacognition... understanding the teaching and learning process. The AS pupil may need specific instructions concerning memorising or listening, and may need to have homework tasks much more specifically organised than for peers (given the risk that the connection between classwork and homework may not be recognised). Similarly, the AS pupil may have difficulty in understanding the meaning of certain punishments (such as lines), and may not recognise having done anything wrong in the first place.

The critical need is for flexibility, and trying to appreciate the AS pupil's point of view.

Biomedical Interventions

It has been observed that certain foods may have an impact upon the behaviour of some people with Autism. However, there has been a tendency in the past to focus upon psychological issues such that diet has not been pursued as a significant variable. Recently, there appears to have been an upsurge of interest in this field; and the following notes are a summary of the review completed by Paul Shattock (of the Autism Research Unit at the University of Sunderland) of research, including much of his own work, and opinion in this field.

It is stressed by Shattock (1998) that the whole question of diet, metabolic disorders, etc. is contentious and lacks empirical data at present. Nevertheless, and despite the absence of proofs, he suggests that the observations made, the parental reports of benefits from biomedical treatments, and the plausibility of the kinds of neurological mechanisms postulated, make it legitimate at least to describe the kinds of approaches that have been initiated already, and to advocate longer term and controlled studies further to explore the possible efficacy of dietary intervention.

In any event, Shattock notes that parents and carers, faced with a diagnosis of Autism, will be prepared to explore all possible treatments even if professionals cannot be seen to advocate interventions which have not been proven, or even (fully) explained. Some of the ideas are said to have been around for a long time and yet still lack clear evidence by which to demonstrate or refute their effectiveness ; and Shattock sets out simply to explain the theoretical backgrounds and to examine the kinds of claims made.

It has been suggested ( e.g. by Crook 1984 ) that the presence of yeast infections in the intestines may have a part to play in the aetiology of Autism, although such ideas have been subject to much criticism.

The theory has it that the human intestines are frill of bacteria which break down certain foodstuffs as part of the process of digestion. Under certain conditions, yeasts (which are a form of fungus) can be established and waste products from the yeasts may be absorbed from the gut and have a disruptive effect upon the development of the CNS and an inhibiting effect upon neurotransmission.

It is further argued that the use of antibiotics taken to kill pathological bacteria will also reduce those bacteria which are normal inhabitants of the gut, with the result that fungi, unaffected by the antibiotics, will be able to multiply.

Reference is made to "common observations" that children with Autism often have a history of earache, ear infections, and hearing impairments for which grommets may be recommended. Such children will have been treated with antibiotics at a relatively early age, and the hypothesis has it that this treatment may provide a "trigger".

Both the yeast and the ear infections are explicable in other ways, but the coincidental appearance of Autism at around 2+ years of age with ear infections and subsequent use of antibiotics is said to be of possible significance.

Shattock describes how, in the 1980's, a number of researchers noted similarities between the behavioural effects of opioids, such as morphine, and the symptoms of Autism.

It has been speculated that Autism may be linked to elevated levels of opioids; which occur naturally in the CNS. The best known of these is beta-endorphin, and some people with Autism have been found to have higher than usual levels of endorphin-like substances in the cerebro-spinal fluid. In particular, these substances appear in elevated levels among those children who seem to have a high pain threshold and who engage in self-injurious behaviour.

Shattock and his team (1998) have confirmed such findings with their evidence that, in 70-80% of people with Autism, urine testing reveals high levels of substances with chemical properties similar to those of opioid peptides ... too large a quantity to be of CNS origin. It is held that these compounds result from the incomplete breakdown of certain foods.

Proteins consist of long chains of units known as amino acids. Normally they are digested by enzymes in the intestines which break down the proteins into the amino acid units. If the digestion is incomplete, short chains of amino acids... peptides... will be formed, which may be biologically active and underlie some of the symptoms characteristic of Autism.

Most of these peptides will be deposited in the urine, but a small proportion will cross into the CNS and interfere with neurotransmission, giving rise to a variety of behavioural symptoms.

Casein, from milk, will break down in the stomach to produce a peptide called casomorphin which has opioid characteristics; similar effects are noted with gluten, from wheat and other cereals, where the compounds formed are gluteomorphins.

Shattock concludes by underlining the point that existing evidence in this field may be suggestive but not conclusive, and there have been no real attempts to demonstrate the effectiveness of such diets in controlled studies. However, parental reports have been positive and data from ongoing investigations in Norway are described as providing some support for the efficacy of dietary treatment.

The advice is that dietary treatment could be something to implement with care and medical supervision on a trial basis of around 3 months, with the proviso that this approach would still be regarded as experimental with no positive results to be claimed since, with the apparent multi-causal nature of Autism, one would not expect to find some unitary solution.

Shattock quotes evidence for deficiencies in sulphur transferase capacities among samples of people with Autism ... i.e. some lack of the efficient operation of this particular enzyme.

It is further noted that similar deficiencies have been linked to migraine, arthritis, jaundice, and various allergic conditions, all of which are said to be frequently reported in the families of people with Autism.

The theory is that in the absence of available sulphate in the body, attempts will be made to replace it, and a likely source is the amino acid called cysteine which is obtained from the breakdown of certain proteins. if this breakdown process is defective, a range of symptoms may result; and it is noted that when certain foods with a high phenolic content, such as apples, citrus fruit, and chocolate, are a regular part of the diet, greater pressure will be placed upon the sulphur transferase resources and the problems will be increased.

One approach to this situation has been to provide doses of cysteine in tablet or powder form.

As before, claims for the benefits of such an approach are very difficult to investigate given the anecdotal nature of the evidence, coupled with the probability that parents experimenting with this approach may be simultaneously trying other interventions.

Shattock's overall conclusion again concedes that the proposals made have not been scientifically tested but are based upon observations of parents and supporting professionals, and there is a clear need for investigations which will demonstrate or refute their relevance. The mechanisms may be plausible but that does not make them factual or significant.

Further, he repeats that it is unreasonable to suppose that any one aetiological mechanism is applicable to all people with Autism, rather it is possible that different aspects come into play, or are of variable relevance, among different individuals. Nevertheless, Shattock suggests that the significance of metabolic aspects of Autism should not be underestimated and regrets that such aspects have not received much attention... possibly because of the practical difficulties in establishing clear correlations between abnormalities and autistic symptoms.

In respect of access to (a form of) the Lovaas behaviour modification programme, an appeal was made by parents of a 5 year old child with Asperger Syndrome and semantic-pragmatic disorder to the Special Educational Needs Tribunal, against Hereford and Worcester County Council. The child had been receiving Lovaas type treatment but not the full 40 hours per week advocated ; and the parents were seeking funding for 40 hours per week for 50 weeks a year.

Some points in the summary document (April1998 ) struck the present writer as being significant

1. The diagnosis was of "semantic-pragmatic disorder as well as features of mild Asperger Syndrome". Significant progress was reportedly gained from the existing Lovaas behaviour modification programme.
One might speculate that the efficiency of the programme was linked to the position of the child at the able end of the autistic spectrum, while also wondering whether it is necessarily the case that benefits from X hours of a programme will be increased in parallel with increases in the programme's availability to X+ hours.

2. The LEA were offering a place at a first and middle school where structured programmes were in place "based on proven provision for autistic children". While the precise nature of the provision in the school is not specified, it is interesting to note that the provision was said not to be reliant upon one single approach. Rather, it involved a combination of known approaches, including elements of the behavioural approaches which are contained in Lovaas programmes, albeit not of the same intensity, with the aim of integration into mainstream as soon a possible.
It is encouraging to see that (apparently, at least) the issue was not "black vs white" not a matter of the LEA simply opposing Lovaas... not a matter of polarisation of parent and LEA positions, but examining current needs and seeking to meet those needs by drawing in a flexible way from the combination of approaches. (Although the context is different, this is in accord with Shattock's quoted view above viz, that one should recognise the variety of aetiological routes towards autistic symptoms, and avoid focusing upon unitary interventions).
The parents' appeal was dismissed, but the tribunal's conclusion referred particularly to "carefully controlled integration programmes... the flexibility of the staff and their experience.. and how the LEA must enlist the support of the parents while making use of their experience in behaviour modification".
The emphasis on integration, which is presumably difficult to reconcile with 40 hours per week of intensive behavioural intervention, is noted, along with similar emphasis upon professionals and parents working together. Parental support, it was concluded, will be the more likely if there is full liaison with them about all aspects of the educational programme.

3. The tribunal's final recommendation was to include in part 3 of the statement a paragraph referring to a... "programme based on a behavioural approach and teaching, setting clear goals and targets, with a high degree of monitoring by trained and experienced teaching staff ".

One would simply highlight the points about

i. clear goals and targets, with its implication for baseline and ongoing assessment such that monitoring can be meaningful and quantitative as well as qualitative

ii. the need for staff training, experience, and demonstrable expertise to be in place within the school's provisions if the placement is to be effective.

M. J. Connor August 1998

REFERENCES

Baron-Cohen S. 1998 Autism and Theory of Mind an introduction and review. Communication Summer 1998 9-12.

Crook W. 1984 The Yeast Connection. Jackson, Tennessee Professional Books.

Jordan R. 1998 1dentifying and meeting the special educational needs of pupils with autistic spectrum disorder. Paper presented at a conference dealing with Autism and Asperger Syndrome London, July 1998.

Shattock P. 1998

A. Back to the future: an assessment of some of the unorthodox forms of biomedical intervention currently being applied to Autism.

B. The use of gluten and casein free diets with people with Autism. The Autism Research Unit University of Sunderland.