- Written in 2002-2003, based on the following assignment:
The term 'autistic spectrum disorder' (Wing, 1996) has been adopted to encompass all individuals who exhibit the 'triad of impairments' regardless of ability or disability and implies some commonality in terms of support needs. Critically examine this contention with regard to appropriate provision and approaches to intervention across the spectrum
Last summer (2002), I participated on a four-day holiday camp for adults with AS, along with eight other autistic* adults. On one occasion, we were walking in the woods, supposedly on an organised “adventure” walk. One tall young man fell behind, on purpose it seemed to me, while two young care workers kept the rear. I slowed down to observe the man. He improvised little songs, very Winnie-the-Pooh-style, to the rhythm of his steps. The words were connected to things that happened around him, and to his feelings, like getting tired with walking. The two girls keeping an eye on him commented to each other on his peculiar ways, in benevolently amused tones.
It struck me that they were not listening to what he was saying. To me the song seemed to have communicative intent, and it should have been observed, and possibly discreetly acted upon. Other similar cautious, indirect attempts to communicate, while totally obvious to me, were invisible to the workers. It appeared to happen because they did not expect communication in certain forms and situations. Throughout the camp, I occasionally felt that I had better insight into the situations of the moderately autistic participants than the carers did.
This was not entirely surprising, as this was the first attempt of its kind to provide free-time activities for this group of people in Finland. Typically for this country, some of the group were hardly what would be called AS cases in the UK, despite having that diagnosis. Some showed little effort to communicate at all, and some required constant personal supervision. On the other hand, there were three academically gifted people; one of these, a 17-year-old, was rebellious and sulky almost throughout, not wanting anything to do with the “retarded”. Activities were clearly a challenge to arrange, as the organisers had little knowledge beforehand of what we could do. The result was that the activities were not really right for anybody; the atmosphere was tense, and there was little socialising even between the more able participants. This was very different from my earlier experiences. I have planned and organised one weekend camp for AS adults, with a program centred around lectures on AS issues, and also helped with the planning of another similar camp, based on the concept of the first one. On these occasions, admittedly, there simply was no special provision for those requiring constant care, as there were no paid workers. Those that did turn up needing more care than was available were to a degree ignored, and probably gained little from the program. The atmosphere was totally different, though, with eager sharing of experience and mutual support. No one seemed to feel a need to avoid association with the more severely disabled, but rather anyone and everyone helped occasionally without any fuss.
Further, the workers at the holiday camp seemed slightly confused about how to approach relatively independent autistic adults. Young volunteers obviously did not know whether to try to support me or leave me to my own devices, and ended up hovering around looking uncertain. At the beginning of the camp the main organiser had remarked on my previous experience in organising activities, saying it could be useful for them. I volunteered to give my opinion whenever they might wish to have it. Later, as various problems developed, it did not seem to occur to anyone to ask me anything at all.
*Footnote: I do not agree with the politically correct use of 'people with autism' or 'people with Asperger syndrome'. This type of expression is unusable in my native language, and in English it is generally used in connection with things that are completely abhorrent and/or temporary, (e.g. cancer, fungal infection, bad attitude). I don't find autism or AS to be either. The use of such a complicated expression puts too much emphasis on the autism, instead of doing the opposite. If a word has negative connotations, tricks like this won't fix it, but just draw attention to it - 'with insanity' wouldn't be any better than 'insane'.
I am autistic, just as I am female, Finnish and myopic, all of these describing a permanent aspect of me but by no means being meant or generally taken as full definitions of who I am. I will write about other people as I would write about myself.
2. Approaching autism theory from an internal viewpoint
The event described in the introduction is not intended to suggest rare talent or skill in relating to other autistic people on my part. Experiences of a similar nature have been described to me by other able autistic people in Finland, and they are also found in autobiographical texts of well-known autistic writers (e.g., Williams, 1994; Sainsbury, 2000). A common theme in the accounts of these experiences is observation of the 'other side' of the interaction; observing how people in general act when in contact with autistic people. My understanding of autism thus derives from a different viewpoint, and is based on observations of very different situations from those that researchers and practitioners would mostly see. From this follows that in order to discuss the support needs of autistic people, I feel it is necessary to carefully define my position with regard to theories on autism.
I work for an autism association occasionally, and engage in voluntary advocacy, but I cannot limit my observations to a work context - unless I extend the idea of work context to cover my home life and social interactions. My husband and I have AS diagnoses, and our daughter has a description of “AS characteristics”. My friends are autistic. The larger community that I choose to deal with in much of my free time is autistic Internet community. Reading about any theory, I will naturally ask myself, 'does this make sense in the light of my own experience, or the experience of my family, friends and acquaintances?' I tend to accumulate anecdotal evidence of what seems right in theories, what seems erroneous, and most importantly, what seems to be excluded and ignored, with no means of obtaining any scientific validation for most of it. The only means available to test any insights is through discussions and long-term observation of the Internet community. Some observations that run counter to common beliefs about autism I find so robust, and so consistent over time and in different countries, that I simply cannot ignore them when regarding theoretical knowledge. Thus, I have cultural and experiential knowledge of autism, and I feel that such elements should have a recognised place in autism research, as potentially suggesting directions for research. It could be argued that I am 'native' to the group studied and thus not objective enough concerning its 'peculiarities' (Cohen and Manion, 1980), but I would disagree - such a claim requires an assumption of a class of scientists free from all group attachments and cultural background. All observers unavoidably belong to groups, and have attitudes and prejudices shaped by their own group, affecting how they will choose the questions they want to ask about another group. I feel the only way to approach some kind of objectivity is to establish interaction between multiple 'native' views, allowing them to cover each other's 'blind spots', accepting that there is no way to look at a group except as a member of one - either the same or another one - and admitting that the internal view of any group also has validity.
3. Current theory and the 'Triad of Impairments' in defining the autistic spectrum
Current major theories on the psychology of autism could be collectively described as follows: A variety of genetic and environmental factors can affect the brain structures and/or metabolism of a developing child, resulting in abnormal brain functioning, which in turn causes the primary cognitive/psychological deficit in autism. This results in a number of secondary cognitive and psychological abnormalities, which in interaction with the environment manifest as the 'Triad of Impairments', as described by Wing (1996). The consensus seems to be that a number of different biological factors can to lead to similar developmental outcomes, and it is not necessarily considered essential to know them, as support and educational needs can be recognised and met largely independent of the biological basis. Controversy exists about the nature of the core cognitive/psychological deficit, and the causal relationships between the observed phenomena, as described by Jordan (1999). The assumption is that by addressing the core psychological deficit, several problems could be alleviated at once. Testing a candidate for a core deficit, researchers tend to check how well it fits in with previously existing experimental data, and how well it explains the emergence of the features described in the 'Triad of Impairments'.
I feel that the 'Triad of Impairments', as perhaps the most commonly accepted description of autism, has undeservedly become a measuring device to determine the value of any new hypothesis, while it contains hypothetical assumptions in itself. While I agree that there is a spectrum of characteristics and need that can be reasonably defined, I feel as Lawson (Residential School lecture, 2002) does that the 'Triad of Impairments' has served its purpose, and needs revising, along with the diagnostic criteria, which are largely based on it.
The most obvious problem contained in the 'Triad' is that all the defining functions - social interaction, imagination and communication - are highly dependent on circumstances and affected by cultural factors. This makes the assignment of an individual to the spectrum or outside it rather arbitrary, if the diagnostic criteria alone are used, especially at the adult AS/HFA end. If we consider for example appropriate social interaction; an individual in a supportive environment, in a secure financial situation, and with an attractive appearance, is certain to do better in this regard than one without any of these advantages, even if their inherent ability to develop social skills were exactly the same. Furthermore, imagination and communication are not independent of the amount and quality of social interactions, but likely to develop better with positive feedback and experiences. The result is that, at the moment, people are assigned to the spectrum or outside it partly based on their life situations and irrelevant characteristics. They may also sometimes seem to fit the criteria and thus be entitled to services, and sometimes not.
It is clear that, at the moment, diagnosis is already done based partly on general impression and common sense, and these are different for different clinicians. The problem is illustrated, for example, by the Norwegian study (Martinsen, 2001) where it was found that 40 % of blind children with no obvious defects of the central nervous system fulfilled the criteria for autism. Deaf children have been commonly mistaken for autistic, and vice versa (Sacks, 1989); differentiating between hearing impairment and autism still presents a problem in some young children. Children with 'only' delayed language development can seem autistic, yet lose many of the identifying features when some form of communication is developed (Pauls, 2001). In practise, the diagnostic criteria are thus used in the sense that an autistic person is someone who fulfils the criteria, but does not have any one of the recognizable disabilities that also tend to produce the same features. This makes autism and AS effectively 'dustbin' categories for a variety of neurological conditions, united by their effect on social interaction and a number of phenomena that follow from impaired social interaction. As the biological factors and genes underlying the autistic spectrum are revealed through research, we can expect the spectrum to be increasingly divided into a collection of recognized entities, the apparent continuum of conditions becoming a series of steps. A continuum of need, however, is likely to remain, because of the variety of environmental factors crucially affecting the autistic individual.
I feel that service providers should pay more attention to reasonably well-proven theories on the biological factors in autism, as and when these come up, instead of referring back to the 'Triad of Impairments' as a primary source of explanations. Knowing about the secretin hypothesis (Dealler, 1999), for example, would allow carers to make educated guesses about how useful it is to 'train' an autistic adult to eat foods he or she avoids. Likewise, looking at an autistic individual's ability profile, one might look for clues of difficulties in interpreting information of any sensory modality, and adjust the support accordingly - avoiding psychological interpretation of certain tendencies as obsessive, and implementing methods used for the sensory impaired instead. A more biologically based definition or definitions of autism would allow people to be included in the spectrum while they do not exhibit current distress or conflict with their environment. I feel it would be useful to allow diagnosis on the basis of such vulnerability. A person who can possibly exist comfortably only in a very narrow and rare social niche, like for example the Cambridge mathematics students in Baron-Cohen's study (Baron-Cohen, 2001), seems to me just as autistic as those who haven't found such a place, and is likely to experience typical problems if forced outside that narrow niche. I would thus include in the autistic spectrum a number of people who are not and may never be in need of specialised provision. This would mean a shift in emphasis, so that autism would not be defined so much on the basis of 'clinical' level of need, but rather as a set of characteristics which only produce disability and support need when present in extreme form, or associated with other complicating factors.
4. An Evolutionary View
Writers like Baron-Cohen (2001) and Murray (1999) have suggested possible evolutionary advantages connected to autism. They address autism mainly as a disability, with some coincidental positive outcomes that maintain a balance in gene frequencies. Jordan (1998) has briefly addressed the issue in a more wholistic manner, yet little has been done to explore the actual implications of the evolutionary hypotheses to theory and provision.
I suggest that a large part of what is currently described as autism could be seen as an alternative developmental pathway, adopted by an organism in specific circumstances. These circumstances could represent one of two main categories: genetic and brain trauma-related, with possible overlap between the two. In the first case, development could proceed down the autism pathway mainly due to genetic factors, as the characteristics involved carry an evolutionary advantage in some situations, particularly when resources are scarce and the human population spread thinly over large areas. Frequencies would probably vary between different populations, possibly being high in primitive societies living in harsh conditions, with cultural acceptance and utilisation of autistic features masking this. In the second case, autism could be a 'last resort' to salvage some of the individual's evolutionary fitness, since he or she would be unlikely to ever successfully negotiate social hierarchies. The key common denominator would be an evolutionary advantage connected to a relative reduction of investment in social activities, and a corresponding increase of investment in dealing with the physical environment. This could have led to an increased likelihood of developing 'unusual' skills that could either be used as currency to negotiate a position relative to a group, or improve chances of survival in relative isolation. I would suggest that a co-ordinated shift in several cognitive abilities could serve the purpose of turning the person's focus of activity away from the social sphere, and more into the physical world. A relative reduction in the reliance on personal episodic memory use and narrative language ability (Millward et al, 2000), and an increase in reliance on implicit memory and visual memory, for example, could work in such a direction. An emotional attitude towards physical objects and aspects of the world, leading to a tendency to 'obsessively' pursue activities related to them, would further serve to keep the individual focused on developing skills that are truly exceptional, and thus potential currency. In the modern world, much of the adaptive value would be lost, except in the case of a few individuals whose talents happen to be in suitable areas. Thus, some of the seeming increase in autism would be likely to be an increase in the problem modern societies have with autism.
Teaching emotion and social interaction
If one assumes that there is no core deficiency in autism, but a co-ordinated shift in abilities, what should one do about the obvious difficulties autistic people face when dealing with other people? The current answer is to teach social skills through instruction and practise. This has been clearly shown to have positive effects (MacKay, Residential School lecture, 2002). I believe that much of social skills teaching is justified, at least patching gaps in general knowledge resulting from isolation. However, I would suggest that a subtle modification of how the skills are presented could produce even better results. Most able autistic people that I have known to create their own survival strategies and maintain emotional stability, have a clear sense of playing artificial roles some of the time for various purposes, and keeping their true, autistic identity firmly separate from these (e.g. Williams, 1994). A systematic approach to self-help, incorporating among others this type of idea, was recently introduced in a seminar by Vallikari (2002), as an approach based on the experiences of autistic people, and on his experiences of providing effective peer support. I would thus suggest that autistic people would benefit from a dual approach of helping them to be assertive about their right to be autistic and appear autistic, but also learn deliberate drama skills so they can temporarily shift into a 'character' to help them survive overwhelming situations and avoid danger. A similarly dual approach could be applied in the area of teaching to recognise emotions. I believe that the great majority of autistic people are in no way lacking in emotional experience, and many actually report experiencing such extremes of emotion that they need to maintain a distance from people and a reserved manner to be able to contain themselves and concentrate on doing things. Also, an experience like Lawson (1998) describes, of finding most people incredibly numb to beauty in the everyday physical environment, frequently comes up in autistic communities and groups. I believe that the autistic person's emotions as such are not disturbed, and not necessarily very different in quality from the normal; they could be just differently focused. The autistic person might thus benefit, not from just learning to label emotions by the things that normal people associate with each emotion, although this is useful too, but rather by creating a rich personal symbolism for emotion, and being assertive about one's own, genuine ways of expressing emotion in close relationships. I feel that this is partly a case of needing to rehabilitate the immediate environment, not the person; teaching others to accept the expressions of emotion as they are, translating what seems cryptic to their own vocabularies of emotion.
Utilising unusual abilities
It seems that a great number of psychological features have been associated with autism that are simply the consequences of poverty, low social position, long-term isolation and lack of attention and respect from other people, leading to some extremely negative descriptions (e.g. Gillberg,) that many autistic people find offensive (Gerland, personal communication). Characteristics that may have improved chances of gaining desired resources no longer have that effect; rote memory is not in highly valued in the modern world, and neither is ability to persevere on repetitive physical tasks, or effective tracking for unusual visual features (O'Riordan and Plaistead, 2001). Autistic children and adolescents are expected to play and behave in an age-appropriate manner, put in classrooms and nurseries in same-age groups, and guided towards 'appropriate' play. In my view, doing this exclusively may be a disservice. Simple exposure to same-age environments, which tend to engender competitiveness and strict stereotypies (Corsaro, 1997), obviously does not improve the autistic child's situation (Sainsbury, 2000). I feel that it might be better to work with the autism, in the sense that one would support the 'non-appropriate' play, and allow development in directions that the child or adolescent feels drawn to. A better position in society might still be accomplished by developing exceptional skills than by endlessly trying to improve social skills that will be likely to remain mediocre at best. I feel that what seems 'obsessional' to most people could mostly be put to some kind of use, if thought is given to what kind of material is provided to develop the 'obsession' in a useful direction. It may not immediately occur to most carers to consider something like high-quality artist's or craft materials to someone who seems to just 'fiddle', or serious teaching of poetry to someone who seems to have difficulty understanding simple statements; yet my experiences with able autistic people suggest that these might be exactly the kind of things that would lead to autistic people gaining better position, respect and self-esteem.
The significance of community for a sense of self
Considering autism from an evolutionary point of view, communication problems could be seen as a result of difference rather than deficiency. A major implication of this would be the possibility of autistic community. I believe that services and support would be best arranged in such a way that they would allow and encourage contacts between autistic people at different points on the spectrum, and in different life situations. Group homes, educational institutions and day centres of course place several autistic people in physical proximity, but this may not be an optimal situation. There will generally be only a small group isolated from the rest of the world, the people will not be together by their own choice, and they tend to be relatively powerless, a group defined by leadership and regulation from the outside, the autistic people not necessarily even knowing how long or even why they are together. Further, many existing interventions are aimed at reducing the visible signs of autism, perhaps sending an implied message that these are faults and failures, causing the autistic people to view themselves and others exhibiting similar signs as less worthy than normal people. This does not encourage formation of community, but rather dissociation from autistic peers. A recognition of the environmental factors at play is shown in an approach described by Jordan and Powell (2000), where the autistic clients were “…given more of the power that had previously resided with the members of staff” (p. 54), thus beginning to approach something like true community. However, this experiment seems to be a rare exception.
Current texts on autism paint a picture of a poor understanding of mental states, and therefore practical empathy, throughout the autistic spectrum (Jordan, 2000). Yet stable Internet communities and peer support groups worldwide show that there is a natural tendency for part of the autistic spectrum to want to have contact with and support each other. The members describe varying levels of difficulty with and dislike for normal social interaction, but most of them don't see themselves as possessing less empathy than people in general - just being slower to recognise the need for it, often arriving at a unanimous conclusion of possessing a 'different Theory of Mind' rather than a deficiency in it. Mostly, the medium itself will tend to select people in fairly good situations, who have access to computers, but with suitable support and safety measures the communities, and the benefits they carry, could be extended towards the more severe end of the spectrum. The benefits I believe to be very much the same as for people in general. I agree with the view (Jordan and Morgan, 1999) that fracturing of experience and a weak sense of self can cause problems in autism, and equally with Jordan and Powell (2000) that supporting the formation of self-concept is an important part of the provision for autistic people. I do not feel, however, that the weak sense of self represents a fundamental psychological problem in autism, or that self-concept could be ideally 'given' to anybody by teachers who make them “…feel that they are valued and respected for what they are”, while at the same time believe that autistic people “may not fully understand about being valued and are unlikely to have a sense of what they are themselves” (Jordan and Powell, 2000, p. 15). I find this illogical, and find it likely that a teacher holding such beliefs would send mixed messages. Particularly, the 'sense of what they are', which I assume to be the very self-concept defined as depending on general evaluations in a particular society or sub-culture (Jordan and Powell, 2000), cannot possibly be realistic if that society or sub-culture consists of a few teachers. Even if their views reflect the general views of the society quite accurately, their position as teachers will prevent them from reacting to the students in the ways that most people would. It is a very specific and regulated relationship; the teacher cannot for example ignore the student and walk away, express open disgust, or express romantic or sexual interest, all reactions that autistic adults face in real life, and reactions that we observe and incorporate into our self-concepts. Also, any self-concept gained from interaction with non-autistic people, including teachers, will tend to focus very much on the difference between the autistic and the non-autistic. Jordan and Powell (2000) mention that people with severe mental illness tend to resemble each other more than people in general. This is likely to be the impression non-autistic people have of autistic people. In my experience, however, autistic people seem truly similar only in their communication with non-autistic people. A great benefit of the Internet communities, and of meetings of able autistic people, seems to be that many autistic people begin to form a self-concept in a natural way. Through exchanging survival strategies, telling about their problems, and sharing humour, they take a place in the community and see themselves in relation to others with similar problems, which means that the problems cease to be the main identifying feature in their self-concept. While there seem to be permanent differences in the way that the autistic community as a whole functions compared to a non-autistic one (Dekker, 1999), there is certainly no lack of variation in personality or role adopted.
Belief in 'Theory of Mind' deficit as a core psychological factor in autism, or a general lack of empathy throughout the spectrum, could be deleterious to any attempts to widen the scope of autistic communities. Rather extreme generalisations based on the ToM hypothesis, perhaps unconsciously, keep appearing. I find it disconcerting that current texts contains statements such as “Unless we have autism, we all observe the actions of others” (Edwards et al, 2000, p. 14). It is obvious to me that most autistic people keenly observe the actions of other people. To illustrate; in 1998, I had a chance to hear Dr Jordan speak in a conference in Sweden. Like other speakers, she was carefully scrutinized and consequently discussed among a group of autistic people attending, the style and content of her speech analysed. Some special attention was given to how what she said related to what was on her overhead sheets, and which funny anecdotes the autistic audience did not find funny. Assuming that autistic people don't observe the actions of others, it would be hard to explain how the discussion could have happened. In my experience, this event was not unusual, but rather what will almost inevitably happen in similar situations. Neither is the kind of claim given in the text highly unusual - or obliviousness to the huge discrepancy between the statement and reality. I find that sentences like the above may indicate an unconscious clinging to a harmful stereotype, which may continue to exist in practical situations despite practitioners changing their theoretical viewpoints on an intellectual level.
6. Conclusion - Differences vs. commonality of need
Writing about the 2nd Nordic Conference on Autism and Asperger syndrome for our national association newsletter, I was struck by the fact that conflicting and even mutually exclusive explanations were being offered as basis for very similar interventions, without anyone openly questioning the logical processes involved (Pukki-Andrews, 2001). It seems that while we know a lot about various phenomena connected with autism, chains of cause and effect are quite hazy. The interventions that people have arrived at could, therefore, be largely a result of trial and error, intuition, conscious and unconscious mutual copying of effective methods, and even a gradual shift in attitudes leading to providers actually listening to autistic people themselves more - with some backward logic applied afterwards to reconcile the intervention with the preferred theory.
The implication of Wing's triad is that, despite differences in the level and type of support needed, there is a type of knowledge and attitude that should be shared by all those who provide that support. For example, if one thought that a 'Theory of Mind' deficit leads to the Triad, the providers' shared approach might consist of paying attention to possible ToM related difficulties in any problem situation, irrespective of the individual's cognitive skills, and then measuring success by functioning related to the 'Triad of Impairments'. Other suggested core issues in autism might be similarly addressed; carers and support workers could be instructed to plan their interventions on the basis that they should provide for example structure and organization, to reduce the effects of 'fractured experience'. Theoretically, ideal support could be developed this way, provided the key psychological and cognitive issues in autism have been correctly identified. Services received by two individuals at distant points on the spectrum would not necessarily be common in the sense of being the same or shared, but rather based on the same theory, and possibly provided by people sharing a degree of knowledge and experience.
I feel, however, that this would not be enough or ideal. We cannot be sure that the key issues have indeed been identified. Logically, identifying a new candidate for a core or biological factor in autism should suggest a critical appraisal of descriptions of secondary features, which Wing's 'Triad of Impairments' essentially is, not just a testing of the candidate by checking how well it fits such a description, quite likely to be imperfect.
Emphasizing biological factors and extending the autistic spectrum to include people who do not exhibit Wing's 'Triad' would, at first glance, seem to reduce the likelihood of any commonality of need. I would argue, however, that such commonality could be identified on a different basis.
Since I believe that being part of an autistic community has significant benefits, I also feel that opportunity to participate is the most significant unrecognised need of autistic people throughout the spectrum. Systematic research into the existing autistic communities and interaction between autistic people generally might give us crucial information that would help us understand autism better, and to form a basis for creating new types of provision. Along with support for autistic communities to expand and benefit a wider range of people, I find that it would be beneficial to start systematically employing the skills of able autistic people in the provisions for the severely autistic. I feel that able autistic people would be in a unique position to help develop new ways of supporting emotional well-being and full utilisation skills for individuals throughout the spectrum, as there often seems to be some intuitive understanding between autistic people, even of quite different ability levels, that may be hard for even the best of care workers to develop through intellectual effort.
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