Behaviors
and Interventions Related to Autism Spectrum Disorders
The third element of the triad of impairments relates to the behavior of individuals with autism. Lorna Wing described this area in terms of impairments in imaginative play but here a more general view is given in keeping with the areas of behavior identified in the DSM-IV diagnostic criteria. These relate to the seemingly ritualistic adherence to activities and behaviors which apparently serve no functional purpose and the repetitiveness and compulsion of some behaviors which are stereotyped or restricted in terms of their nature or intensity. These are the broad areas, which appear to have a specific relation to autism. In addition to these idiosyncrasies various other elements of behavior, and more basic cognitive processes that relate to behavior, are discussed.
Anecdotal evidence offers us descriptions of the behaviors common to autism. One of the most telling observations is the apparent need for certain rituals and events. These seem to coexist with ‘peculiar’ obsessions (for example with specific objects). As well as this need for ‘obsession and ritual’ there is often a high level of repetition of activities, mostly in communication or brief motor activity (such as hand-flapping or head-banging). When rituals and structure is removed from the environment (and for many other reasons), ‘challenging behaviors’ and ‘tantrums’ may be a consequence. These make education and daily living very difficult and are one of the major causes of trauma for individuals with autism and their families. In addition many individuals demonstrate ‘self-injurious behaviors’ (such as head-banging and self-picking) in response to a need for communication, frustration, raised endorphin levels and many other reasons. The behaviors common in autism are discussed in terms of the way they are presented and what might be the underlying causes. It is vital that the reasons for behaviors are understood, especially if the behavior has a damaging effect on the individual or those around him or her. Methods of managing behavior are discussed in the section on ‘interventions’, but it is first necessary to understand the why of behaviors, before seeing how to cope with them.
According to the diagnostic criteria for autism repetitive and stereotyped behavior, demonstrating restricted interests and activities, is a basic expression of the condition. Anecdotal accounts of the behavior of people with autism give numerous examples of these restricted interests. Children with autism may seem to be incomprehensibly obsessed with some non-functional object or part of a toy and may become very disturbed when it is taken away from them. The strangest part of this behavior may be that the object or toy is not used for any specific function or purpose. Other people with autism might be ‘obsessed’ with certain figures, or with collecting particular objects, with water, with memorizing bus time tables or train destinations. These are all fairly typical ‘obsessions’ (except perhaps for the interest in water that appears common to people with autism), but where they differ is in the degree to which the obsession consumes the individual, the control they have over the obsession, and the non-functional nature of the particular interest.
Often the specific interests or obsessions will restricted to bizarre areas which seem to be chosen for no logical purpose (collecting books on the basis of the birth-dates of authors for example) but which seem to fit for the person with autism. Even where the interests are in more generally understandable area, for example collecting pictures of sports cars, the object of interest seems to be unimportant in itself and merely represents a focus of interest or ritual (the individual who collects photographs of sports cars might have no interest in seeing or driving in the car). These obsessive tendencies and restricted interests are not limited to these overt examples but can be seen in most areas of everyday life, from the arrangement of furniture to times at which dinner is served or people go to bed. People with autism may have many routines which seem bizarre to their peers or family and will find it hard to cope when these routines are disturbed.
It is important to recognize the importance of these behaviors and the role they play in the everyday lives of people with autism. Routine in itself is not a ‘bad thing’, it is a basic part of life which everyone values and needs to some degree or another. It is a means by which we understand and feel secure and safe within out environment, it makes the world reliable and predictable (some people may criticize this, but too much uncertainty and unpredictability is very stressful and taxing even to the freest of spirits!). Routine helps us develop and define our own role and place in the world and gives us a feeling of identity and belonging and therefore a means of expressing ourselves and developing out autonomy and independence. Obsession with certain interests is often condoned where the degree of obsession is not seen as too pervasive and the subject is considered worthwhile. It might be necessary to alter these attitudes somewhat to consider the unique impact autism has on the functioning of individuals.
To people with autism the world might be somewhat confusing. Impairments in theory of mind might make it difficult to understand other people, impairments in central coherence might make it difficult to understand objects and events in context and apply meaning to them. Therefore seemingly useless or non-functional objects or interests might have specific relevance to some people with autism whereas some more generally accepted interest might be devoid of the meaning which most people attach to it. It is hard to define how these particular interests develop but it is true to say that some areas lend themselves more readily to the particular abilities and interest of people with autism. There is great heterogeneity in autism but it is probably fair to say that areas which have little contextual meaning or human significance might be topics of interest to people with autism, and that mechanistic or numerical areas (such as bus routes or train timetables) might be more common obsessions. These are areas which avoid the difficulties which people with autism experience (social interaction and understanding, the need for communication) and concentrate on their skills (rote memory, spatial awareness etc.).
Whatever the source of interest or the area of routine they
serve vital roles to people with autism. More than for most people, for those
with autism there is a need for security and to understand the world. This is
best achieved through familiar and comfortable objects and activities. Where
something has personal relevance it is both a comfort and an expression of
personal identity. It may also be
escape from a world which puts too many pressures and demands on the individual
just through normal daily events. Simple social interaction can be very tiring
and cognitively draining for people with autism. It is perhaps inevitable
that when these obsessions and rituals are disrupted the response may be
apparently extreme and disproportionate, especially where there is no clearly
understood reason for interference.
There are various stereotypical behaviors which are commonly
seen among people with autism. Some of the most common are ‘body-rocking’, hand
and limb ‘flapping’ and ‘head-banging’ and ‘spinning’. These might be engaged
in at various times: when agitated, when aroused or active, when happy, when
excited, when angry and even when simply comfortable and relaxed. Where these
behaviors are a problem (for example see ‘self-injurious behavior’) the reason
for their presence must be carefully considered. These behaviors can be simply automatic,
they can be learned and copied, they can be exaggerations of rhythmical habits
which nearly everyone has (foot-tapping for example), mostly they express
arousal of some kind or elicit an interesting feeling or sensation. Rhythmical motions are good ways of imposing
order and control on one’s self and the environment and this order is something
most people with autism seem to both desire and need. There is a common
incidence of interest in spinning around and in watching spinning objects, the
dizziness spinning evoke may be enjoyable, as may be the elimination of other
information. The physical sensation of some stereotypes may also be pleasurable
or interesting. The figure-of-eight motion, which some people with autism
display (with hands, arms, heads etc.), may represent an unconscious effort to
integrate the activity of the brain’s hemispheres. It is an exercise prescribed for people who have had the corpus
collosum damaged or have experienced a stroke. Some repetitive stereotyped
behaviors can be explained in terms of an executive function deficit: the
ability to over-ride or inhibit the natural basic responses might not function
adequately and such behaviors become self-fulfilling. Stereotyped behaviors do not cause any harm in and of
themselves, unless they cause damage to self or other people, or they
inhibit the ability to learn or take part in activities. In this case certain interventions can be
tried, the most effective being those that involve the learning of new skills
or abilities.
Unfortunately for individuals with autism and their families and careers, ‘tantrums’ and destructive behaviors are common, especially among children. The term ‘challenging behavior’ is a controversial one, but it is intended to suggest that behaviors present a challenge to professionals and services. This is supposed to prevent internalizing the cause of the behavior and ‘blaming’ the individual. This is very important in autism, as it is unlikely that any behavior which causes difficulties for families and professionals, is intended maliciously or vindictively. There is virtually always some other, unidentified, trigger that precipitates challenging behavior. Some vital function that it serves. It is worth noting that in most cases (although not all) individuals do not enjoy ‘being challenging’. This alone should suggest that there is some significant need or impetus for the behavior. Unfortunately it would appear that the majority of cases of ‘challenging’ behaviors occur by children in the presence of their families. If such behavior is a challenge for professionals then it can have a debilitating impact on parents and siblings. It is therefore very important that behavior are dealt with in way which allows both the secure functioning of the family, and the opportunity for the individual to develop skills and communicate effectively.
‘Tantrums’ are one of the most common problems in young children with autism. They may appear to go into a state of rage, panic, anxiety or fear for no reason at all. ‘Tantrums’ are normal behavior for most children and there is no reason why children with autism should by-pass this stage of development. The problem seems to be that it is more difficult for parents to prevent ‘tantrums’ in children with autism, the child seems inconsolable during the ‘tantrum’, the episode might last a long time, and the reconciliation that typically accompanies the end of the ‘tantrum’ rarely occurs. ‘Tantrums’ are just one example of challenging behavior. Similar episodes of panic, anxiety, rage or even aggression might be seen all through childhood, adolescence and even adulthood. This might involve screaming, crying, resisting contact with others, or pushing others away. On the other hand it might be much less overt, such as refusing to respond to interaction (especially in learning settings where this might have a destructive effect), using others as objects and refusing to comply with daily activities. Obviously these behaviors are not necessarily ‘challenging’ but in some cases they might cause disruption (for example to a classroom engaged in a lesson, or a family outing or event).
What causes this? As with such behavior in all children there may be any number of causes. There might be underlying reasons (such as feeling upset, anxious or angry) and immediate triggers (such as being told to do something). In autism however there is also a specific pattern of behavior, and of social interaction and understanding, that can help us explain some ‘challenging’ behaviors.
People with autism often rely on ritual and structure55.
Structure is a method that helps define the world in terms of rigid rules and
explanations and that helps the person function most effectively. Most children
with autism find their own methods of imposing structure and maintaining
consistency. They need this structure because the world is confusing. Other
people are complex and almost impossible to understand. The information they
receive through their senses might be overwhelming and hard to bring together
into a cohesive whole, and there is likely to be an additional learning
disability that makes it hard to apply cognitive skills to all these areas at
once. Therefore when some form of structure or routine is disrupted the world
becomes confusing and overwhelming again. It might be like losing a comforting
toy when feeling alone or homesick. This disruption of structure might be
obvious (having a collection of objects disturbed, being made to go a different
way to school, getting up at an unusual hour) or it might be hidden (subtle
changes in the environment which the child is used to for example). Some of
these triggers might be out of the control of the individual or his or her
family members. Some might be avoidable.
Others might be necessary events, which can be slowly introduced so as
to limit overt reactions. It is important to remember that ‘tantrums’ and
similar behaviors are not rejections. They are not emotional blackmail or
warfare aimed at those close to the individual. They are the natural reactions to various stimuli. Natural if you
have autism that is. Disruption of structure is only one trigger of such
behavior however.
In more general terms one of the most significant causes of ‘challenging behavior’ is a communicative need. For people with profound difficulties in understanding others and in communicating with them it is hardly surprising for frustration, anger and anxiety to build up. It is also quite likely that ‘challenging behaviors’ will directly serve as a form of communication. Natural ‘tantrums’, for example in response to changes in routine or requests to do something the individual does not want to do, may well be reinforced by the other people involved. For many professionals and parents it might be easier to let the child ‘have their own’ way rather then help them to develop other means of communicating. In this way the child will learn that ‘challenging behavior’ may be the most effective and immediate way of bringing about a desired response from others. It is perhaps inevitable that this will be the case in home environments where parents do not have the time, resources or knowledge to deal with this behavior more constructively. This might also be the case in educational settings where there is a compromise between offering support for the individual with autism and ensuring that any ‘challenging behavior’ is not detrimental to other students. This is where support is needed both in the form of direct interventions related to the behaviors, and in advising and helping parents manage episodes in ways which can be applied at home. It is important to intervene as early as possible so that behaviors are not reinforced and so that other means of expression and communication are open to children with autism. Appropriate ‘behavioral interventions’ take into account the functions of behaviors and do not seek simply to limit the behavior itself.
In summary, it is important to recognize two major dimensions of ‘challenging behavior’. These include recognizing that there are experiences and difficulties specific to individuals with autism that might trigger or cause these behaviors. These include problems with understanding themselves, the world around them (especially their social environment) and their relationship with it. They might have cognitive difficulty in processing and applying meaning to the information they are given. They might need rigid structure in order to function comfortably. They might not understand or require the typical social interactions and comforting of other children (such as being hugged when crying). These difficulties can be improved slowly through education and other interventions, but basic differences must be respected and effort can be made to manage the environment so that the individual is more comfortable (allowing some structure, avoiding distracting information when engaging in tasks, allowing personal space where necessary). The second major area is where ‘challenging behavior’ serves a communicative function. In this case the function of the behavior must first be identified before teaching and developing other means of communicating.
‘Interventions’ looks at methods of providing support and intervention for people with autism in order to help them overcome any difficulties they might experience as a result of their autism, and so that they can make the most of the skills and characteristics they do have. This is divided into four areas: Education, Behavioral Interventions, Drug Interventions and Other Interventions. Other Interventions include those which may be seen as behavioral or educational in terms of content, and those which are more controversial but are included for the sake of completeness. Discussion of these interventions is based on the characteristics they improve and the psychological and neurological theory which helps explain them.
One of the triad of impairments and one of the most obvious
and debilitating facets of autism is the difficulty with which individuals understand,
relate to, and integrate with their social environment. The inability to
participate in social interactions at a functional and reciprocal level has
both direct and indirect consequences on their educational development. The
social impairment can be seen to directly result in difficulty in developing
relationships, engaging in activities and taking advantage of the vast range of
opportunities of a socially orientated world: from using public and community
facilities to developing satisfactory lifestyles and relationships. Indirectly
the social impairment will also detract from the ability to adopt and develop
new skills and knowledge. When the social world seems bizarre and inexplicable,
then interventions in that domain will be that much less effective unless
methods are used which overcome, bypass or compensate for the difficulties
which people with autism experience. To develop language and communication and
to cope with a more advanced curriculum it is first necessary to bridge the
gaps between the social environment of education, teacher-student-peer
relationships, and the individual with autism. Therefore an educational approach focusing on the development of social skills
and social understanding is imperative.
In developing social skills through education it is constructive to break down the social abilities and impairments of individuals with autism into their component parts. In this way basic, fundamental skills, such as eye contact and gaze, can be specifically targeted prior to tackling more complex issues, such as ‘theory of mind’ and ‘declarative joint attention’ deficits. It is also important to recognize that due to the fundamental nature of autism, the basic ability to learn the meaning and significance of some social skills may be limited when compared to non-autistic peers. If the understanding of the mental states, emotions and relationships which lie behind social interaction is different to what is considered ‘normal’, then skills based on this understanding or perspective will inevitably be effected. Individuals with autism may have their own, equally valid, methods of perceiving and representing the world outside and their own individual feelings and thinking. In this case other methods must be employed in order to manage the problems that some social skill deficits impose. Put crudely this may amount to helping the child ‘fake’ social skills so that they may function more easily even when they do not understand the need for such skills. Individuals should be allowed to develop their own means to ‘bypass’ social impairments. They should be made to rigidly conform to social norms but should be supported in reaching a level where their acceptance and ability to function is not overly impaired. Common in autism is the ability to learn social rules ‘by rote’, rather than ‘intuitively’. Whereas efforts should be made to assist the individual to develop this ‘intuition’, by which non-autistic people pick up and learn social conventions and methods, their limitations should also be recognized. The learning of rules ‘by rote’ should not necessarily be discouraged but, where employed, assistance and guidance should be given so that this method can be generalized to new and different contexts and environments to that in which the rules were first learned.
‘Eye gaze’ is one of the basic social skills missing or altered in autism. Children with autism are perfectly capable of using their eyes physically, to assimilate information, but problems arise where they do not understand why they should use gaze and establish eye contact. The eyes are used in so many different ways that it must be difficult for people with autism to ascertain any given purpose of eye contact. Simply observing the use other people put their eyes to would not be sufficient to for the child with autism to learn about eyes, not without some in-built mechanism which assists them in deciphering the messages. Where eye contact is avoided or absent, it is helpful to promote its use in everyday settings. ‘Positive reinforcement’ may increase the use of eye contact but in order to establish meaning (the why of eye contact and gaze) it is necessary for eye contact to serve a specific purpose. Rewarding a child for simply looking you in the eye may teach him that using eye contact can be beneficial to him, but it will not teach him to use it in a socially appropriate and functional manner. However, making eye contact a prerequisite for engaging in a desirable activity (such as play or meal times), and reinforcing contact by allowing the child to then engage in that activity introduces both significance and functionality to the behavior. This can then be generalized to making simple requests and a range of functions slowly introduced in the appropriate context.
‘Joint attention’ can be initially developed by a fairly active teacher involvement. When the attention of a child is drawn towards an object or activity, for example a spinning-top, but is not shared with anyone else, the object or activity can be commented on by the teacher. The teacher may manipulate the object or activity in some way to show that the child’s action has drawn the teacher’s attention to it. Although the teacher plays an active role by introducing the ‘joint’ element of ‘joint attention’, the spinning-top was effectively chosen, as the ‘attention’ element, by the child. Genuine joint attention can then be developed by reinforcing the active sharing of attention with the child and the spinning-top. This can be done, for example, by responding to the child’s alternative direction of eye contact or touch towards the spinning-top and towards the teacher, by making the spinning-top spin faster or by helping the child to spin it (assuming of course that the child enjoys this!).
The roles of relationships with peers and the development of friendship are key both to functioning successfully within an educational environment and to developing lifestyles and taking advantage of opportunities available to others9. Again it is necessary to realize that for individuals with autism the degree and nature of peer relationships may differ from the norm, but this does not make them any less important or valuable. Also individuals with autism may genuinely want only a limited or ‘distant’ level of relationship, and this too should be respected. The significant issues are that the individual has the supported opportunity to develop relationships, and that they attain the skills necessary to make sense of, and function within, their social environment. methods used in the development of peer relationships include encouraging reliance on peers rather than on teachers (especially for older children and adults). This may involve the teaching and support of other students in the class or educational setting. It is also important to actively teach the child to differentiate between rigid and flexible social rules. Incorrect adherence to some rules of social interaction (for example being ‘too honest’ when a friend has been ‘naughty’) will make developing social relationships difficult, whereas the breaking of other rules (for example breaking the law or important school rules) will result in other problems.
There is some evidence to suggest that exposure to non-autistic peers may improve the social interaction and functioning of children with autism in some domains (such as the ability to play socially and imaginatively), but it is important that the correct setting and context be used and supervision be provided (‘tantrums’ are not good for developing peer relations!). This may be in the form of social or locational integration (where playtime or facilities respectively are shared). For higher functioning individuals and those with Asperger’s syndrome there may be some benefit from mainstream education (provided the curriculum does not overwhelm them to the point where the strenuous intellectual task of adapting socially becomes neglected). Here, however, there is a risk that the child will be ignored or even bullied and will feel lonely and unable to develop and use social skills. This is a very real risk unless careful education and support of both the individual and his peers is ensured.
In general, effort must be made to ensure that there is a consistency in the introduction and use of social skills in education. In order for a child to monitor and understand their social context they need to use a large amount of their intellectual capacity: developing social skills is a ‘brain-drain’. By simplifying demands, reducing distractions and including mastered tasks (using tasks which the child is already proficient and comfortable with alongside new and challenging tasks) this intellectual strain can be reduced. In contrast to their non-autistic peers (including those with similar levels of learning disability or developmental delay), children with autism have first to learn the ‘intuitive’ element of social interaction which is so often taken for granted, before learning the means by which these skills can be achieved. This understanding is vital to skill development and the whole educational process, from dealing with ‘language’ and ‘communication’, to managing ‘behavior’ and applying the ‘curriculum’.
Children and adults with autism experience difficulties in understanding and developing functional and meaningful communication. This is often expressed in terms of poor speech and language skills, but the fundamental impairment is more basically linked to the concept of communication itself. People with autism may not have sufficient understanding of their own experiences and feelings, of those of other people, and of the relationship between themselves and others, to fully grasp the significance and need of communication. They may not have the basic social skills and understanding to develop means of communication (such as speech and language and alternative forms) to anything more than a basic level. Most children with autism will need support in developing and using language, but before this is possible they will require support in understanding the purpose and means of communicating.
Teaching programs aimed at developing communication skills must recognize that the basic impairment that results in autism has a direct impairment on he ability to read meaning into communication, into interaction with other individuals. It is necessary to augment basic elements of communication (such as ‘joint attention’) with direct instructions and descriptions of what is happening so that the attention of the child is held. Explicit explanations about the meaning of communicative acts will be useful in ensuring that the child is made aware of the significance of what might otherwise appear bizarre behavior. Examples of this would be prompting a child to ‘take the toy from me’ when a toy is presented to him or her (to confirm the significance of the act), or by saying ‘look at this’ when an object or activity is being referred to (to ensure ‘joint attention’). These may seem obvious techniques, but it is important to use them consistently in order to help the child recognize patterns, rules and functions of communication. Most non-autistic children do not need verbal explanations to take an offered toy, or to attend to an object which is held up in their view. This is a way of introducing the concept of the meaning and purpose of communication.
It is often necessary to explicitly teach the child about the significance of various elements of communication. These include the use of gesture and posture, facial expression, and tone of voice. Most children learn about these nuances naturally and are able to interpret the meaning they convey. A child with autism may need to have each behavior explained precisely. For a lot of people with autism some of these nuances are difficult, both to understand and to adhere to. Some children for example might not feel comfortable in close proximity to others (close enough for normal communication to take place). For these children it might be necessary to slowly allow them to be accustomed to being near to teachers and family members. This can be achieved by performing tasks and interacting at a progressively smaller distance until they are comfortable. It is also extremely difficult to teach a child with autism how near they should stand to those they are communicating with. General rules can be learned but they will lack the ability to adjust their presence based on unconscious feedback from others (which people without autism do naturally). Here the concurrent learning of ‘social skills’ might be applicable. With gestures it may be necessary to explain each individual behavior. Gestures will be more applicable to children with autism if they are directly and obviously relevant. For example handling an object might be more communicative than pointing at it from a distance.
Most children with autism will attend primarily to the word-content of speech and not these augmentative behaviors (the receptive speech of children with autism is generally at a much higher level than their expressive speech). In an educational environment variations of tone of voice and excessive use of gesture might restrict learning, the child being distracted from the content by the delivery. It is important for teachers to be consistent in terms of their own speech and accompanying behavior in order to help children learn more effectively. In order to teach specific nuances it can be helpful to use overt examples of the meaning of gesture and expression. For example, a simple phrase spoken hurriedly and accompanied with the wringing of hands can be explained as communicating anxiety. The same phrase can then be spoken slowly an accompanied by behavior that communicates contentment or relaxation. These can be explicitly explained. These examples would only suit children with good receptive speech, but variations can be applied for other differing levels of understanding. Teaching about these nuances is a compromise between limiting too much variation and inconsistency so that information is conveyed most effectively, and taking advantage of opportunities to explain the meaning hidden in our actions.
Communication in the education of children with autism is not primarily about teaching the how of communication. This is important and will follow, but the basic problem is overcome instead by teaching the why of communication. Teaching what communication is about and what function it serves. Learning the function of communication is intrinsically linked with learning about ourselves and our own relation with the world in general and other individuals in specific.
These functions can be developed from first principles. Trying to get a child to express feelings and emotions will not be possible unless they understand and can master more basic elements of communication. One of these is the function of requesting. Many children with autism manage this unintentionally, or rather sub-consciously, through ‘imperative joint attention’ (for example by pushing an adult’s hand towards an out of reach toy). This can be turned into a genuine request by encouraging eye contact and explicitly defining and explaining the intents and actions of the individuals involved (e.g. by saying ‘Oh, do you want your toy? ...OK, I’ll get it for you...here it is.’). With all techniques of communication these can be practiced both ways (i.e. requests can be made of the child as well as by the child), and this can help to underline the role that other people play in the communicative process. When simple communications, such as requests, are mastered, then more complex areas, such as expression of desires and feelings, can follow. Any additional learning or developmental delay the child has will also limit all of these abilities.
Context is also a significant factor in learning about communication. As well as the individual nuances of gesture, expression and tone of voice, external and situational factors effect the meaning of communication. Again these have to be explicitly stated and demonstrated. For example the difference between a hand held out at the end of dinner (‘can I have you plate please’) and at a more formal meeting (to shake hands) might not be readily apparent to the child with autism. It may be that social niceties must be left to one side when initially learning about communication. Many of the more basic communicative actions engaged in by children with autism may be seen as ‘challenging’ or ‘disruptive’. While these might otherwise be discouraged, it is necessary to identify any communicative intent, clearly show the child that it has been recognized, and comply with it. This can be done while encouraging a less overt or destructive form of the behavior in order to demonstrate that communication is a two-way process. Otherwise the child may learn that certain behaviors elicit certain responses by trial and error and not through a more constructive appreciation of the role of other people in communication.
In some cases it may be helpful to manipulate the situation so that the child must use communication to bring about a desired response. An example would be by placing a toy which the child likes to play with out of reach, so that the child must communicate with an adult in order to get the toy. What is important is using the child’s own activities and behaviors as a basis for introducing the concept of communication. By reading intent into some behaviors it is possible to illustrate how communication can effect ourselves, the world we live in and the people we come in contact with. Using behaviors the child already engages in ensures that there is already meaning and significance present and that communication can be used to illustrate that meaning. Starting with behaviors, which are generated externally and without meaning to the child, will limit progress. These can be slowly introduced, as the child becomes more proficient in learning about communication in general.
An inevitable consequence of the impairment in communication in autism is a subsequent difficulty in attaining and using language skills. This refers to both the constructive usage of language (especially in social contexts) and the basic ability to acquire and develop the mechanics and processes of speech. For a significant minority of people with autism speech never develops. For these people and for many others who do attain a limited amount of speech it might be necessary to introduce and develop ‘alternative and augmentative’ forms of language and communication. This may be partly due associated difficulties with language acquisition which are not specific to autism, as well as other basic learning disabilities.
The benefits of developing spoken and written language are immediately obvious. The vast majority of social interactions and elements of daily living are dependent on competent speech and/or literacy. The failure to develop such skills can seriously impair the opportunities available to individuals with autism. Therefore it is always important to work at developing these abilities, while also recognizing a need to develop functional communication through other means. Sign language, picture-boards and other alternative forms might be vital in the basic functioning of children and adults with autism, and might have a beneficial effect on reducing ‘challenging behaviors’ which serve a communicative need. Before considering how to introduce and develop these skills it is first necessary to see how fundamental language skills can be encouraged and improved, as these are of primary importance to functioning and learning.
The language of most people with autism who develop speech is atypical. They may be relatively adept at attaining the structure of language but more basic understanding of the purpose and use of speech might be absent. Understanding is often seen as a prerequisite to the production of language but in many case of autism this does not appear to hold true, with production of speech often being mechanical and sterile, and seemingly meaningless. People with autism tend to be relatively proficient at learning ‘by rote’ and thus may quickly pick up the generic rules of the structure of language, but they are also seriously impaired at applying meaning and context to all areas speech and communication. There is a basic human need
(or instinct) to produce speech and this instinct may be preserved among children with autism in the absence of understanding of the function and meaning of language. As a consequence they may appear to function at a higher level then they actual comprehend. On a more positive side this at least means that in the majority of cases there is the practical and mechanical ability to develop language but not he communicative understanding to develop meaning and motivation to speak, read and write.
It is therefore vital when teaching language to children with autism to help them understand awareness and ability to ‘communicate’. It is important that the function of language is emphasized. Children with autism might understand the basic meaning of a sentence but might need the intent or request, which might appear ‘hidden’, explicitly stated. This is especially true of questions or statements which, when taken literally, have different meaning than that intended. For example the query ‘Is there anything you would like to do today?’ addressed to a child with autism might well elicit the response ‘Yes’ when the intent of the question was to establish what the child wanted to do. Because of the child’s apparent comprehension the questioner might mistakenly imagine him or her to be being deliberately awkward. It is important for teachers and parents to avoid this trap. This is a common element of language where context and behavior is equally important to word content in order to understand the message or query. Where this usage of language is unavoidable it will be helpful to clearly explain both what the real meaning was and how to recognize this.
A lot of the limitations which children with autism experience are as a consequence of impairments in communication. These can be ameliorated, for example, by removing the confusing elements of behavior, gesture and tone of voice from language training. This can be done by encouraging reading, which may be less confusing as written words to not carry any of these confusing accompanying elements, or by using computer-assisted learning. These forms of teaching avoid the confounding elements of language and such practices can be applied to general teaching by ensuring that the ‘literalness’ inherent to autism is not overly confused by metaphorical and sarcastic language (which challenge the interpersonal understanding of people with autism). Because these elements of language are part of every-day life it will be necessary to teach them separately, from first principles, but they should be avoided where they will interfere with general learning.
TEACCH (also known as Division TEACCH) is a program based in North Carolina in the US. TEACCH stands for ‘Treatment and Education of Autistic and Related Communication Handicapped Children’. It was set up in the early nineteen-seventies as a program to improve and develop services for children with autism (and similar conditions) and their families. As an organization it operates in designing and providing services for children, adults and families, training professionals who will be working with people with Autism, and conducting research in various areas related to autism. In this third role TEACCH bridges a gap between theory and practice, offering a set up where research findings can be applied in clinical and educational settings. The practices and findings of the program can be applied in many areas, especially that of education. The existence and success of the program emphasizes the need for a specific authority or government led provision for people with autism, so that services, expertise and support are available to all.
TEACCH is organized into three structures. These relate to ‘home adjustment’, which offers support to families and care providers; ‘community adaptation’, which educates the community on autism and develops new community services; and ‘education’. In addition to clinical diagnosis, TEACCH provides social skill training, individualized curricula, vocational training and parent support and training. TEACCH staff are available to provide consultation to schools and homes. The experience and knowledge base of the program therefore has a direct and significant influence on education in all environments.
The educational element of the TEACCH program ensures that all teachers working with autism have attended a short, intensive course on the education of children with autism, and that TEACCH staff members are involved in the school placements of children. Educational intervention is based around detailed assessment (which forms part of the diagnostic process). Priorities include communication and social interaction skills, and emphasis on daily living skills. Strengths, such as visual processing, learning ‘by rote’ and ‘special interests’, are identified and worked on. Emphasis is placed on structure both in terms of content and delivery of educational curricula and in terms of environment and setting. TEACCH provides a life-long service, which ensures that contact with professionals and experts is available during all the stages of development, adolescence and adulthood. This is in contrast to services available elsewhere where support and intervention is obtained from a number of different autonomous agencies with little or no liaison. TEACCH demonstrates the need for coordination of all services and interventions so that they work together for the benefit of the individual and family.
Daily Life Therapy (Higashi)
Daily Life Therapy and the Higashi school in Boston are often referred to in the media when discussing autism. Reports suggest that daily life therapy is an effective and productive method of supporting individuals with autism and there is a high demand for places (and high costs as well). All though the term ‘daily life therapy’ suggests some more holistic form of intervention it is included here under education as it as based around an educational program and education, by its nature and in the away it is related to autism, should be holistic in the first place.
In addition to basic principles of education common to the teaching of children with autism, Daily Life Therapy ensures a program combining physical exercise, structure and a bias towards the ‘arts’. The program was initiated in Japan during the nineteen-sixties by Dr. Kiyo Kitahara and was expanded to include the Boston school ten years ago. The school includes students up to 22 years of age (considerably further then most statutory provision) but places emphasis on early intervention by rarely taking on new students over 12 years old. Surprisingly for the positive claims of the projects effectiveness staff/pupil ratios are not all that high (with around 1:3 during school time). The school is involved in a number of research studies.
The school aims to develop basic communication skills and apply them in a social context. Attention is paid to group dynamics in order to develop the interpersonal understanding and skills of individuals with autism. This is partly achieved through physical exercise. Physical exercise is a means of improving the attention and interaction of children with autism as it provides a disciplined and structured environment with few distractions where children can function more comfortably. Physical exercise does not require good cognitive skills and there is less risk of information ‘overload’ in this context. This provides an opportunity to develop as part of a social group without restricting learning in other areas. In addition physical exercise is seen as a productive and constructive way of satisfying the need for routine and rhythm and reduce frustration and anxiety. It also provides scope for sensory integration and stimulation. Curricula lessons are aided by computer learning in order to ensure maximum learning and art and music are considered important. Attention is paid to vocational training so that skills and abilities learned while at school can be generalized and applied to a practical setting on leaving school. Employment and community work are supported while still at school and includes payment. The school offers counseling and family support and also provides access to general therapeutic services.
The school in Boston has around 120 students and involves high costs, which may in some cases be funded by local authorities. This makes it appear very exclusive. The assumption therefore follows that it is very effective in terms of its benefit for people with autism. This seems likely but it is worth considering that the school is over-subscribed and can therefore accept individuals according to their likelihood of improving. Whether the method itself is significantly superior to other schools is debatable. Of great importance however are the resources (in terms of staffing, knowledge base, access to vocational training and use of learning tools such as computers) which are available to pupils attending the school. The method itself seems to be constructive an effective. The use of physical exercise and group dynamics are sound principles which can be applied in general education and home settings. The concept of emphasizing arts and music to encourage appreciation of aesthetics and human dignity is perhaps less obviously beneficial. This would seem to involve teaching ‘higher’ concepts which might be perceived in fundamentally different ways by children with autism. The interpersonal meaning and expression inherent in art and music might by missed by children with autism but they might be able to appreciate and relate to the basic aesthetics of color, form and sound. Daily Life Therapy provides a good example of where structure and resources can improve educational outcome for children with autism. It is necessary to generalize these elements of schooling so that they can be applied and offered to all children.
For most people with developmental, learning or physical disabilities or impairments there are several splits in terms of what services are provided, and by whom. As well as a rather artificial divide between ‘social’ and ‘health’ elements there is also a very distinct separation between ‘education’ and ‘health’. This is inevitable due both to the structure of education and health services, and to the expertise, skills and knowledge base of the professionals in each field. They are, however, inextricably linked, and in the case of autism, where many of the difficulties with health and development are due to specific impairments in interacting and learning about the world, all health care professionals should recognize the role of education as central to the holistic needs of the individual. This includes appreciating the work of educational specialists, understanding specific educational needs, and sharing knowledge and experience with other professionals. This is especially true of children and adolescents but is equally relevant to adults, who may well have their ongoing learning and education neglected once they leave school.
Education is the single most important intervention in autism. Appropriate programs, curricula, approaches and teaching skills (all of which are based on knowledge, experience and resources) can have a marked effect on limiting the negative aspects of autism and helping the individual develop to their own potential. Poor education, with little knowledge, no structure and an ineffective environment can hold back the individual with autism and limit the opportunities to develop and learn which should be available to all children. Education can be seen to cover two broad areas with children and adults with autism. The first is the primary functional purpose of all education. This is to enable the individual to learn about themselves and the world around them, to learn and employ general and specific skills and abilities, and to support their intellectual, physical and emotional growth and development. Education prepares individuals to cope with the world independently and with individual identity, needs, wants, goals and feelings. This is done on the basis of a curriculum, which supports the basic skills and knowledge which are deemed essential in today’s world. The curriculum is applied through the skills, knowledge and experiences of the teacher and, most importantly, by the children or pupils themselves. This general role of education applies to children with autism but in addition they have specific educational needs.
The second area where education works as an intervention in autism is in supporting the individual in developing and learning to cope with and manage their own specific impairments. Often these needs must be met to a reasonable degree before the individual is able to benefit from more general education, and so they may take primary importance. In other cases the management of autism-specific needs may run concurrently with growth and learning in other areas. These needs are fundamentally based around two areas of the triad of impairments. These are: an impairment in social interaction, and an impairment in communication. Where there is profound lack of social contact and interaction many of the means and media of education will be hindered or useless. In order to progress with more general learning social interaction may need to be learned and developed (as is appropriate for the individual). Social interaction is just as important as a basic human ability as it is a means through which to learn, and people who experience difficulty in this area (including those with autism) find many barriers and problems in daily living and functioning. Communication is also uniquely impaired in autism and educational approaches will often be the most beneficial interventions. Here it is not simply necessary to teach and develop means of communicating, but rather to identify the need and purpose of communication. Once these have begun to develop it will be easier to facilitate learning in other areas.
The deficit in social interaction and the development of reciprocal social relationships is one of the most profound, an often painfully obvious, impairments in autism1. The seeming lack of attachment and understanding of autistic individuals for their loved ones and those who surround them is one of the major causes of problems and difficulties arising from the process of growing up and learning. In some cases parents and families may despair for the seeming lack of contact between themselves and their child and wish for some means of bridging the gap between them. However in other cases there is evidence of much effective and meaningful contact between people with autism and other individuals, and the social world in general, even in the most typical and classic cases of the condition. Along with practical difficulties of ‘challenging’ and stereotyped behaviour, the lack of social contact is often one of the major causes of difficulty and distress among people with autism and their families. This is why carefully planned intervention and constructive and understanding support are essential for families and individuals. It is absolutely essential to remember that, although people with autism may not understand or express feelings and needs relating to social interaction and relationships it does not mean that these needs are absent. People with autism are equally capable of developing relationships which are meaningful and still feel and need the love and sense of belonging which is common to all members of the human race. It is just that these things may have unique meanings and representations to them and expression may be in a vastly different way to that which is typical (hardly surprisingly considering that people with autism may not have command of the same means of expression as other people). This makes attempts to limit the problems which arise all that more important. Although the underlying impairments of autism cannot be cured or removed they can be very successfully ameliorated with the correct resources and understanding. Therefore it is necessary to have a fuller understanding of the manner in which this impairment in social interaction presents itself, and the possible causes for this.
A lot of the misunderstandings, problems and tensions which arise from a deficit in social interaction can perhaps be avoided by recognising the specific difficulties that people with autism have in a social context. Some of these are outwardly apparent, often from an early age, some less so. Many of the behaviors which are basic elements of developing social interaction and understanding are absent or impaired in autism3. People who do not have autism may well take these everyday things for granted but to individuals with autism their lack can have a profound effect on functioning and relating to the world around them. These
impairments include the use of ‘eye gaze and eye contact’. One of the earliest presentations of autism in infants is the lack of the use of the eyes contact to pick up information from their carers and to aid in developing obvious attachment with their loved ones. Another significant element of social interaction in autism is an impairment in ‘joint attention’, the ability to share attention with another person in relation to an object or event, with the purpose of drawing attention or requesting an action regarding the object or event. This impairment would seem to be an early indicator of autism and has been important in the development of psychological theories such as ‘theory of mind’. ‘Imitation’, which is an important skill in the learning process and in picking up social skills from others, is also generally impaired in autism as is the ability to ‘play’, an ability which combines imitation and imagination and is vital in learning and developing relationships and social roles. The manner in which people with autism develop ‘attachment and bonding’ with parents and family members often follow a different pattern to that which is typical and, inevitably, the forming and structure of ‘peer relationships’ is unique and often problematic. These element of social interaction are discussed in greater detail in this section and means by which they can be managed and skills developed are discussed in the section on ‘intervention’.