This essay describes two periods of transition within an autistic child’s life. The purpose of the essay is to demonstrate how personal and social theories might usefully be applied to real world situations. The facts of the case will be reported first. Autism will then be described briefly followed by some concepts on learning and how they might apply to the case in question.
A mismatch between the child’s development and mainstream education precipitated the first transition. It highlights two issues. First, the style of learning difficulty that autistic children possess, and second, the distinction between the learning needs of individuals compared to what may be on offer in an educational system. A short historical review of the growth of schools is included here.
The eventual imminent breakdown of the family lead to the second transition. It emphasises the problem that autistic children have in forming relationships. In addition, it illustrates the discord between some of the expectations that people and society have about families and what actually happens within families. Some notions about the role of families will be presented here. The essay will conclude that effective personal change can be a very complex and emotional experience, both for the individual and those around. However, the learning disability in autistic children might well protect them from the shocks and upheavals that attend change and transition.
The case covers the first twelve years of child Andrew’s life. The material for the case has been gathered from Health Service and Local Authority records, supplemented by recollections from his parents, teachers and social workers. He was born in Oldham on 30.9.81. Problems were anticipated during the pregnancy because his mother was said to be ‘mentally handicapped’ with an IQ of 52. She lived in a hostel and attended an adult training centre. Her own mother was known to have phenylketonuria (“PKU” – an inherited metabolic disorder, associated with ‘low intelligence’). Andrew’s father was one of three other ‘handicapped’ residents in the hostel. Andrew’s birth was uncomplicated, ‘PKU’ screening was negative and he was to all intents and purposes a normal, healthy boy.
In view of the disabilities of the parents, Andrew, when still unborn, was assessed as needing foster-parents. At two days old, he was therefore placed in a middle-class foster-home which already contained an adopted daughter aged two years. Mum, a registered nurse, was taking time off to look after the house and children, and dad, me, was a medical practitioner.
Andrew was adopted when he was two years old, following which the family moved from Oldham to North Yorkshire. Foreseeing problems, the parents asked for an assessment by the local paediatric service. The educational psychologist’s evaluation suggested Andrew’s development was six months delayed, and classified Andrew as having ‘moderate learning difficulties’. Andrew was thus placed in a special school and ‘statemented’, a process whereby his educational needs and provision for those needs under the 1981 Education Act could be reviewed (Solity, 1992).
When Andrew was nearly four years old the family moved to their current address in West Yorkshire with a recommendation from North Yorkshire County Council (Education Department) for him to attend a special school. He was actually placed in the local infants and junior school (mainstream schooling as opposed to special) where the ‘statementing’ process could continue. Two such ‘statements’ over the next two years suggested that Andrew was appropriately placed in the infants school as long as there was help from speech therapy and educational psychology. In the ‘statements’, the educational psychologist described Andrew’s major problems as ‘low social skills and behaviour’. He was a loner, uncooperative with the adults trying to teach him and unfriendly in the playground. Whilst at least one teacher had experienced severe difficulties with Andrew and questioned the placement, his case seems to have been championed by another more elderly teacher and the speech therapist. Both the parents went along with the professionals publicly, whereas they had reservations in private.
In his third year in the infants Andrew was involved in an incident witnessed by the headmistress.
He trapped another pupil’s fingers in a toilet door. He stated, ‘I did it on purpose’. The headmistress and the other pupil’s parents considered this behaviour to be unacceptable and an extra referral was made to the educational psychologist. Andrew’s ‘statement’ was reviewed earlier than planned. Through the medical network (a doctor sits on the ‘statementing’ panel), the paediatric services also became involved. A clinical psychologist suggested in conversation that much of Andrew’s behaviour was compatible with autism, but the opinion was never formally reported. The ‘statement’ was changed, and in December 1988, Andrew, aged seven years, moved to a special school.
Throughout this period, Andrew’s behaviour at home had become increasingly verbally and physically aggressive. This was not assessed as part of the ‘statement’ and went unnoticed. Andrew’s parents however did wonder how many unreported violent incidents had taken place in school.
A further two years passed before the home circumstances deteriorated enough to involve the Local Authority. The educational psychologist’s report briefly, describes the amount of adult time, in school as well as at home, taken up in supervising Andrew and his aggression. Support to the other family members and some sort of five day residential placement was recommended. A regular review process was arranged by Social Services. When aged ten years old, Andrew was taken privately to The Maudsley Hospital in London by his parents for a formal psychiatric opinion. Autism was diagnosed. More family support and residential schooling were considered as necessary to prevent family breakdown. All these suggestions were looked at and implemented to a degree, but for various reasons (eg. lack of resources, parental uncertainty) did not make a significant impact. In fact, over the following two years, the home circumstances continued to deteriorate. Andrew’s mum was especially vulnerable during this time as dad had taken on extra managerial responsibilities in his work. Relatives and friends provided the bulk of the help and support needed. Andrew’s older sister and younger brother (born in 1985) received professional counselling.
Towards the end of 1992 when Andrew was eleven years old, dad began to be more forceful in the review meetings, but it needed a social worker, during a home visit, to see Andrew beat another child around the head, before dad felt he was really being listened to. Respite residential care was arranged as soon as decently possible and in June 1993, when Andrew was nearly twelve years old, he went permanently into residential care. This concludes the case study.
Moving onto autism. In the 1940’s, Leo Kanner and Hans Asperger described a group of children who were different to their peers. These differences were summarised in a triad of abnormalities. Use of language, even when fluent, was literal in its understanding. Imagination was limited to repetitive play in childhood, whilst in adults it appeared as an obsession with facts. Social skills showed wide ranging ineptness and inappropriateness.
Frith (1993) describes autistic children as ‘specifically impaired in their understanding of mental states. This has far-reaching consequences for higher order conscious processes. It underpins the special feature of the human mind, the ability to reflect upon itself.’ She concludes, ‘We must see autism as a devastating handicap without a cure. The autistic child has a mind that is unlikely to develop self-consciousness.’
How can the autistic mind be conceptualised? A theory of learning (Kolb, 1984) and a framework for what learning might achieve (Harris, 1973) will be discussed. How an autistic child might interact with an educational system rooted in nineteenth century economics and politics will then be discussed followed by a review of an autistic child and the twentieth century family.
Of the many theories that cover how children acquire an understanding of the physical world and its conceptual structures (from Freud’s psychoanalytic concepts of the unconscious to Watson’s stimulus-response model of behaviourism), a most practical way of making sense of Andrew comes from Kolb (1988), building on the work of Piaget. Effective learning occurs when four stages are worked through in a cycle – concrete experience, the search for meaning (missing in autistic children), the development of concepts and the design of new experiences. Kolb called this experiential learning, as opposed to learning purely by the accumulation of factual knowledge, which is only one quarter of the learning cycle. Experiential learning seems to capture the messy non-linear reality of transition – a process of change associated with feelings, occurring as part of normal development or as a reaction to crisis. It is the adaptability of Kolb’s ideas that help autism to be comprehended within an everyday framework of normality. For the purposes of this essay, learning will be referred to as formal (or cognitive) and informal (or socio-emotional) respectively. Whilst the majority of modern science and technology learning is formal and making day-to-day sense of human relationships is mostly informal, they need not be exclusively so. Experiential learning aligns more with behaviourism – machines that can adapt to the environment – than psychoanalysis. People possess personal identities, perceptions of self that are conferred through relationships with others and events and are stable over time. Yet it is a post-Freudian model, described by Harris (1973), amplifying Byrne’s work on transactional analysis that offers a very useful perspective on Andrew’s autistic personality.
The model comprises parent, adult and child, each catagory representing a behaviour that has been learned during socialisation (see appendix 3). Parental behaviour may be controlling (authority) or nurturing (maternal), not necessarily gender specific. Authority has its place, for example being clear on formal rules and expectations (eg. ‘don’t play with fire because it hurts’). However, much controlling parental behaviour arises from an assumption that authority figures are right on most issues (eg. ‘you should never trust a black person’), including interpersonal relationships. These messages may also be received informally (eg. a look of horror on another’s face when approaching a fire or simply residing in a district where only white people live). In other words attitudes and prejudices are swallowed along with the useful hints and tips. Similarly maternal behaviour can be caring and supportive, yet possessive and smothering. An inability to help the self may be learned along with selflessness. These behaviours are thus internalised, uncritically accepted as ‘how things really are, or should be’, because socialising forces are very strong compared to the relative weakness of people who are making their way in the world.
The child component of the model may either be free or adapted. A free child may be creative, spontaneous and uninhibited on the one hand, and selfish on the other. An adapted child has learned to live under the thumb of the internalised controlling parent, afraid and depressed. This child’s behaviour is all about staying safe.
The adult is the detached, cool, rational analyser, testing out what is really going on.
The model suggests that people are an amalgam of these components, displaying behaviour according to whether parent, child or adult is ‘in role’. The model is attractive for a number of reasons. Whilst it is derived from Freud’s id, ego and super-ego, it does not stress concepts such as the unconscious and is thus both practical and intelligible. It implies that roles can be chosen – people can switch roles to suit circumstances. Lastly, it gives a serviceable structure within which autism can be accessed. Andrew’s disability is seems to be an underdeveloped internal controlling parent. His behaviour looks to be a balance of free child and adult, since he appears not to learn by reflection. Whilst aware of his impact on others, he does not form any meaning behind events and no change in behaviour follows. He is still able to learn the facts of acceptable behaviour, much in the way that others gain academic knowledge. The educational priority for Andrew therefore lies in a formal approach to making sense of relationships.
The first transition of Andrew’s life occurred before a firm ‘diagnosis’ of autism was made. His assessments were made on the basis of progress within an academic educational system. How might Andrew’s needs fit with the education system? No system as such existed prior to industrialisation. Rich families might have hired tutors, but most children followed in their father’s rural occupational and social footsteps, with strong influences from community and kin (Giddens, 1997).
During the nineteenth century, this way of life virtually disappeared, replaced by towns and factories in which many children were left unsupervised and unsupported (Bowman, 1988). The government’s grant system to produce a ‘reformed, controlled workforce’ using a school ‘production’ line was unsuccessful. Further government legislation promoted moral training and compelled schools not to turn children away. All children began to receive free education to the age of 14 years (Sutherland, 1988) and school replaced the family as a way of ensuring a steady stream of workers who would behave themselves.
Education in the twentieth century has been dominated by scientific theory, aiming to reduce inequality of opportunity. For example, following the 1944 Act, children were classified on the result of an IQ test (‘eleven-plus exam’) as requiring placement in grammar, secondary modern, technical or special schools. However, it is still argued that the purpose of education remains the same as it was in the nineteenth century, namely the production of a literate and disciplined workforce (Giddens, 1997), using formal methods and a standard curriculum. Such an all-powerful social process fits easily with an uncritical acceptance of authority at the personal level. The socialization provided by education is knocking on an open door, so to speak. Andrew, however has not benefited from formal mainstream education. He has a capacity for academic learning, but the social skills which most people take for granted, learned informally in day-to-day life needed to be grasped first. In special school, after a settling-in period, Andrew has made steady progress in the classroom. The small numbers, the emphasis on life skills and the fair and consistent discipline have provided a structure within which Andrew has been comfortable. He still has difficulties in the playground. This progress fully justifies Andrew’s move from mainstream to special school. The settling-in period might have been more traumatic, but Andrew’s make-up, whilst disabling, is also protective, in the sense that the move was just a move. It carried no personal meaning for him and therefore no grief.
Andrew’s second transition resulted from autistic behaviour which could not be tolerated within his adopted family. Again this change held little personal meaning for Andrew, but it demanded a huge shift in attitudes toward family life by his parents.
Where did the family beliefs and expectations originate? In pre-industrial times families were embedded in communities and were essentially a unit of production (Giddens, 1997), usually in small holdings. Each family member was involved in growing crops, keeping animals and performing the jobs needed for day-to-day existence. People married by arrangement and sex was not regarded as pleasurable, merely as a necessity for the procreation of children. The notion of selecting marriage partners on the basis of sexual attraction and romance is modern and has become the accepted way of setting up a home and rearing children in western societies. As work is mostly conducted away from the family dwelling so the family unit has converted to a unit of consumption. Despite other choices of communal living (eg. one parent families, cohabitation of unmarried partners), 95% of people still marry in contemporary Britain (Moore, 1995) and 60% of the population live in households comprising parents and children.
Whilst the basic needs of many, but not all, individuals (eg. security and companionship, parenthood) have helped to promote family life, there are many societal pressures which also endorse it. For instance, free market economics are a considerable influence. As a consumer, the family is bombarded with advertising and its images of the model family. The ‘Oxo’ advert and ‘Katie’ is perhaps the most notable example of so-called ideal family life as depicted in the media. If this product is purchased, so too will a whole lifestyle. In addition, government policies and bureaucrats are geared to reducing liabilities. It could be argued that the ‘Back to Basics’ campaign of John Major was simply a smokescreen for cutting the cost of families to the state, continuing under New Labour. Whether it be from a ‘functionalist’ perspective or one of economic conflict (including a feminist viewpoint), the outcome is a stable partnership of two adults, making a home for themselves and children and thereby reproducing the status quo. Mum, dad and the kids are happy and a healthy and well-adjusted future workforce is ensured – perfection?
Clearly life is not like this and a middle class family containing an autistic child exposes the mythology of the flawless family. First, it illustrates the unequal parenting responsibilities between mum and dad (Busfield, 1987) since mum was left with most of the work. Second, it portrays the quite normal way that a mum’s need to care can be submerged by the everyday hassles of child supervision. In addition, Andrew’s needs for attention virtually all the time could not be met without neglecting the needs of the other two children in the family. Aggressive outbursts followed parental attempts to please everybody, first from Andrew and eventually from his older sister. This was not how life ‘should’ be, and the parents understandably blamed themselves for their perceived poor parenting skills. Parental morale sank, and despite belated attempts to support them all, Andrew had to move into residential care. With the benefit of hindsight, dad has suggested that had he been around more, rather than pursuing a career, the structure that Andrew needed might have prevailed and the inequality of caring between dad and mum would have been less.
After an initial period of instability the staff in the home and the parents have created a caring partnership. Mum and dad have become more realistic about their expectations of family life. Dad has taken early retirement and mum has returned to work. Andrew has acquired a range of adults, including his schoolteachers, with the energy and understanding to develop and implement a firm and fair programme of behavioural training. The result is not perfect, but it is good enough.
In conclusion, this essay describes two periods of transition within an autistic child’s life as an illustration of how personal and social theories might usefully be applied to real world situations. The messiness, the potentially conflicting needs of all the players in the story, the polarity between the individual and the institution, the emotional investment and the sheer complexity of change are all highlighted. The essay is an academic exercise, a side-effect of which, has been, paradoxically, to help the parents make some sense out of chaos.
- Bowman, I. (1988) ‘Maladjustment: a history of the category” in W. Swann (ed)
- The Practice of Special Education Oxford: Blackwell.
- Busfield, J. (1987) ‘Parenting and parenthood’ in G. Cohen (ed.) Social Change and the Life Course London: Tavistock.
- Frith, U. (1993) ‘Autism’ Scientific American June: p78-84.
- Giddens, A. (1997) Sociology , Cambridge: Polity Press.
- Harris, T. A. (1973) I’m OK, You’re OK London: Pan.
- Kolb, D. A. (1984) Experiential Learning New York: Prentice-Hall.
- Moore, S. (1995) Sociology London: Hodder.
- Solity, J. (1992) Special Education London: Cassell.
- Sutherland, G. (1988) ‘The origins of special education’ in W. Swann (ed)
- The Practice of Special Education Oxford: Blackwell.
Submitted as part of a Behavioural Sciences Msc, University of Huddersfield