Parental Input in Education: An Illustration

MENTAL HANDICAP VOL. 21 DECEMBER 1993

Parental Input in Education: An Illustration

Alison Al borz

There has been much recent debate on the part parents may play in the education of their children. This debate appears to apply equally to special and mainstream education. The following article discusses some of the literature on the area of home-school links and presents an illustration of a boy with autism who, due mainly to his extreme non-compliance, appears to have been incorrectly labelled as severely mentally handicapped. The perseverance of his parents and the open attitude of his present teacher challenged this assessment and the boy began to make good progress.

There has been much recent debate on the contribution parents may make to the education of their children (e.g. Bastiani, 1987), the extent to which this parental involvement has been achieved and the resistance of some schools and teachers to it (e.g. Atkin, Bastiani & Goode, 1988). The main focus in the literature has been how teachers pass on skills to parents so that they may continue the educational process at home or how they may respond to parental worries. There is relatively little discussion of whether there is anything parents may add to the teacher’s knowledge of a child.

The illustration presented here suggests that there are circumstances in which this latter form of ‘partnership’ may be invaluable. When a child is autistic and does not cooperate in standard forms of assessment, hidher behaviour makes under- estimation of abilities likely without some other input to the process. This example describes the experiences of the parents of a child who has autism in respect of the teachers they have encountered. It attempts to examine these experiences in the light of current research in the area of home-school links.

Autism When a child is diagnosed as autistic, the prognosis

is often poor. The main features of autistic disorders are now largely agreed. There are deficits in social and linguistic skills, and behavioural abnormalities which are often paired with intellectual disability to varying degrees (Rutter & Schopler, 1987; Gillberg, 1990; Wing & Gould, 1979). The underlying causes are still under investigation; however, there is some agreement that a genetic component may confer vulnerability. More specifically, an inherited pattern of cognitive deficits (Rutter et al., 1990), may interact with other factors, possibly environmental stresses, and manifest itself as autism in the child. Of those children diagnosed as autistic, it has been argued that one might expect only &lo% to improve to the point of becoming independent and functioning in adulthood, without specialised help, with a further 2630% progressing well, the remaining 60-70% making little or no progress (Wing, 1986). Wing also describes ‘phases of autism’ and suggests that between two and five years of age it is seen in its most typical form, the child‘s behaviour being very difficult. From six to twelve years there is often some improvement in social responsiveness skills and behaviour. The teen ye&rs and twenties are again a difficult time, with behaviour problems reappearing or becoming more marked. Such behaviour lessens again through adult life.

The characteristic behaviour of a child with autism makes accurate assessment of potential very difficult, in that the child is likely to avoid any form of interaction, be it social, visual, linguistic, or tactile. This, coupled with the more fundamental linguistic difficulties which often occur, may make it difficult to infer potential from performance level (Tinbergen & Tinbergen, 1983).

However, such judgements are often made and educational priorities devised on the basis of them.

ALISON ALBORZ is a Research Associate at Hester Adrian Research Centre, University of Manchester, Manchester M13 9PL.

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In such cases, input from parents, who have the widest experience of the child, may be crucial.

Parents and teachers In mainstream education, the Plowden Report

(DES, 1967), amongst others, has stressed the importance of parental involvement. More recently, it has been shown that when parents understand, identify with, and support what the school is trying to do, and take an active interest in, and provide support for, their child‘s school work, the effects can be dramatic and long-lasting (Atkin, Bastiani & Goode, 1988). Barton & Moody (1981) suggest that benefits obtained from interaction between parents and teachers should be more easily attained in schools for children with severe learning difficulties, due to much lower pupil-teacher ratios and the lack of an abstract competitive syllabus.

In special schools the major focus of parent/ teacher interaction appears to be involving parents in the teaching of their children (for example, Cunningham & Sloper 1978; Pugh, 1981). However, one study in a single LEA found little evidence of parents and professionals working in partnership, nor was there evidence that either party saw this as a priority (Sandow, Stafford & Stafford, 1987). Whether this situation is more widely applicable is difficult to determine without further investigation.

Cunningham & Davis (1985) suggest that parents are demanding more of a say in issues that affect their children and that the evolution of some specialist services to their current forms has been due to parental pressure. This, they contend, is indicative of the importance of parent-professional collaboration which, they feel, should be based on mutual sharing of relevant knowledge and skills. They also acknowledge that, to provide the best treatmenUeducation, professionals need a considerable amount of information in order to understand the child as an individual.

Parents are usually experts on their children, due to the fact that they have spent a considerable amount of time with them in a variety of contexts. Cunningham & Davis state that parents are well placed to provide much relevant information. Sloper & Cunningham (1991) provide a useful breakdown of levels of parenuteacher links which vary from basic home-school links (constituted by written information, telephone calls, casual contacts at school events, etc.) to parent-professional partnership (where parents are actively involved in education, contributing their own special knowledge and skills). How the link is defined is dependent on the content of the interaction between parent and teacher.

Though part of the evidence cited above relates to mainstream education, the illustration presented

below suggests these issues may be equally relevant to special education.

An example of a child with autism The following illustration is based on interviews

given by the child‘s mother, teacher and speech therapist. It must be stressed, however, that part of the information on past dealings with professionals is provided solely by a retrospective account given by the mother; it was not possible to check accuracy. The information is not intended to be accepted unequivocally, but to provide a background against which to set the current relationship between parent and teacher.

The child who is the subject of this illustration was ten years old when the interviews upon which it is based were conducted by staff at the Hester Adrian Research Centre (HARC), University of Manchester. They were carried out as part of a study of formal and informal social networks surrounding individuals with mental handicap who had been identified on a larger survey as showing severely challenging behaviour(s).

Early background At the time of the interviews Oliver (not his real

name) was living at home with his parents and younger brother. His father was working full-time, but his mother had not returned to work (teaching) since Oliver was born. His mother described his early development as ‘normal’, except that he became increasingly remote over a period (from approximately 12 to 36 months of age) when she was separated from Oliver on several occasions, including one separation occasioned by the birth of his brother. He successfully completed his third year developmental check in all respects other than speech; he was affectionate (on his terms only) and engaged in play activities. He was referred to a speech therapist, in whose opinion Oliver had the ability to talk, but was choosing not to. In his mother’s opinion, too, Oliver showed that he did understand what was being said to him but he was extremely non-compliant. For example, if she asked him to go to the bathroom, he would go in every other upstairs room except the bathroom. His mother found that if he discovered behaviour that was annoying, he repeated it. Any behaviour that was praised was subsequently avoided.

The process of diagnosis Oliver was referred to hospital for diagnosis of

his problem. His mother described this period as an ‘horrendous two years’ due, in her opinion, to ‘lackadaisical organisation’. Oliver’s parents felt that the psychiatrists involved took little account of the information they offered regarding Oliver’s abilities, dismissing them at best as being wishful thinking

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or imagination. Other consumers of this type of service have expressed similar concerns, feeling that their opinions and worries are discounted, and that they are made to feel irrational, unstable and a hindrance to the whole process (Brown & Hepple, 1989; Hewett, 1976).

The basic difficulty appears to have been that, as Oliver had always been especially non-compliant, his performance in tests did not provide an accurate reflection of his abilities. Oliver’s parents conceded that he often behaved as though he was severely ‘sub-normal’ but they felt that in many ways Oliver behaved ‘normally’ when it suited him. The doctor concluded that Oliver did not understand the test items and that his mother imagined his abilities when younger.

Eventually, Oliver’s parents managed to get his case transferred to a second hospital where they found the staff more supportive. Oliver’s hospital visits produced diagnoses, firstly, of severe developmental arrest and regression, then disintegrative psychosis before finally arriving at autism. He was, nevertheless, labelled severely handicapped and unfit to attend an MLD school. This horrified his parents who still thought of him as a bright child but a ‘camouflage expert’. Completely deflated, and feeling unsupported by services, Oliver’s parents sought a place for him at a boarding school for autistic children.

Attempts to establish home-school links Oliver started at the boarding school when he

was five years old, remaining there all week and returning home at weekends. His parents were not satisfied with the situation on several counts. Their dislike of boarding was reinforced by the fact that residential care-staff changed with ‘alarming regularity’. What disturbed them even more was the lack of information about their son’s progress, and reluctance by the teachers at the school to use them as an additional resource in the education of their son.

Oliver’s parents eventually decided to remove their son from his school because they felt he was not progressing. He seemed unhappy (he was soiling and wetting at school but not at home) and they wanted to implement ‘holding therapy’ with Oliver, which would not have been possible in the school.

Oliver’s parents were able to obtain a place at a school for children with complex learning difficulties that he could attend daily. This school had a much higher staffing ratio (1:2) than his previous school (approximately 1:8) and was, therefore, able to offer him much more individual attention.

Oliver’s difficult behaviour In his first year at this school, in addition to his

autistic behaviours, Oliver was described by his teacher as exhibiting a serious level of self-injury

as well as less frequent attacks on others and destructive behaviour. He was described as non- compliant and overactive. One year later, another teacher disagreed with a large part of this description of his behaviour, identifying extreme non-compliance as his most serious problem. She had no evidence to support the idea that Oliver was aggressive or destructive and, in fact, overactivity was a concept completely at odds with her experience of him. Her main problem was motivating him to move at all:

The problem that I see with Oliver ... is just this non-compliance really. His amazing skills and strategies and this very consistent ability to present a picture that he cannot do something. (Teacher)

The teacher described how every activity was very hard work as it had to be constantly supervised or else he would not co-operate. The generous staffing ratio was a great advantage as, without this almost one-to-one attention, he would not participate. During the first two terms of his second year (with his current teacher), Oliver did not appear to be aware of his environment. The teacher described her task as being to foster communication, develop skills and break through the non-compliance:

. . . but for two weeks he had me convinced that he could do nothing at all, that he wasn’t with us. (Teacher)

His teacher based this conclusion on the fact that he would make no attempt whatsoever to do a task continuously presented to him over a couple of weeks in a variety of situations and despite much prompting .

Oliver’s parents maintained their approaches to school and indeed at this new school felt that their interest was welcomed.

Using parental approaches Informal meetings resulted in an exchange of

information during the latter part of the Spring term between Oliver’s mother and the teacher. This was of great benefit to both Oliver and his teacher:

She watched us work with him and said ‘he can do this, and he can do this’ and I said ‘are you sure?’. I tried and nothing at all, no response whatsoever, and I stepped back and Mum stepped in and he just did it! (Teacher)

This knowledge changed his teacher’s perceptions of his skill level, particularly his understanding of language, and his future potential. She felt able to persist in her approaches to get Oliver to perform a task and say ...

Now I know you can do this, you are not going to pretend that you can’t.



and know that he understood very well what he was being asked to do.

The speech therapist also found that her perceptions and expectations of Oliver changed and she would persist in trying to get him to complete tasks in the face of very persistent distraction tactics:

He really comes and seeks your attention when he doesn’t want to comply . . . he’s looking, staring at you, and giggling at you and he won’t take his eyes off you. (Speech therapist)

Oliver’s ‘strategy’ for evading the task in hand had been effective in the past. However, the speech therapist, knowing now that he was capable of more, tended to engage in a ‘battle of wills’ in an effort to get Oliver to co-operate. She admitted, though, that any task still took a long time to complete and that because of time restrictions, on some days, she had to finish the session without him doing anything at all.

Consequences Just prior to the interviews, early in the Summer

term, Oliver had been making significant progress. At school his teacher was more persistent, using language to cajole and emphasise the positive aspects of any activity. At home, Oliver’s mother continued $0 work with him on pre-numeracy and literacy skills. Both mother and teacher agreed that sharing information had been of great benefit. Oliver’s mother was pleased that the teacher was willing to listen to her and try new things. She appreciated that teachers are restricted by lack of knowledge of what a child can do in circumstances where the child does not provide any clues. Both at home and at school, Oliver began to reveal skills that he appeared to have picked up incidentally. His mother observed an understanding of numbers up to ten as a result of his independent completion of tasks in a workbook which included use of ordinal numbers (third, seventh, etc.). His teacher gave other examples: a sudden increase in ability to recognise a wide range of items to which he had previously appeared oblivious; and the ability to pedal a trike with great competence, though he would still abandon this activity should others try to ‘lptch’ a ride.

At; the time of the interviews, Oliver was going through a period of great change. As far as the future was concerned, his mother felt that until they had ‘uncovered his complete range of skills and abilities, it would be difficult to predict the extent to which he might function at ‘normal’ levels. At the very least, he was no longer considered to be severely handicapped and, if he continued to progress at the same rate, his teacher envisaged the possibility of him transferring to a school for children with moderate learning difficulties. There

was a great deal more optimism than there was six months previously.

Discussion The evidence presented in the above illustration

is of course no substitute for rigorous investigation of the issues it addresses. While it is not possible to document fully how the improvement in the child’s situation occurred over time, the mother’s claim to relatively sudden and significant progress in her son’s development was verified by his teacher and speech therapist. Improved communication between parent and teacher appears to have produced benefits for a child with autism. Several aspects of their particular situation were helpful.

Firstly, factors connected with the school itself should not be under-estimated. The close geographi- cal proximity of the school to Oliver’s home and the high stafflpupil ratio at the school contributed to good communication. The ethos of the school itself, in welcoming parents at any time (though not to the detriment of pupils) also played a part in encouraging frequent informal contacts between mother and teacher over several months. This enabled them to build up a friendly relationship, perhaps reducing inhibitions about speaking frankly about Oliver.

Secondly, aspects of the teacher’s personality and approach to her work may have been of benefit. She appeared warm, friendly and enthusiastic. She showed concern for her pupils and a delight in their achievements, particularly Oliver’s. She appeared to have confidence in her own abilities as a teacher, as well as an open mind to possibilities she may not have considered. This confidence meant that she did not feel threatened by a parent in the classroom observing her work. Her open mindedness seems to have enabled her to take the mother’s comments into account, acknowledging that some behaviours may occur more often in some settings than in others.

The dramatic difference in Oliver’s response to a task presented by his mother appears to have convinced the teacher of the extent to which his behaviour in school was leading to an under- estimation of his abilities. This knowledge was then used to inform future teaching strategies. This practical relationship with the teacher may have also enhanced the mother’s confidence in approach- ing her, either with information felt to be relevant to Oliver’s education, or for guidance in her own attempts to educate him.

Oliver’s parents had been implementing holding therapy. This involves holding the child on an adult’s lap so that, although the child can move, he or she cannot ‘escape’. The reasoning behind this procedure is that it shows the children that they are loved and secure (Welch, 1983). Holding therapy had been

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implemented for approximately one year before the changes in Oliver’s behaviour began to occur. There may have been a causal effect, but holding therapy as a whole requires full and rigorous investigation before anything other than anecdotal claims for its efficacy may be made.

This study may be regarded as a special case, in that, the mother concerned was a teacher. Parents who are professionals, especially if they have some inside knowledge of the way the system works, are generally more successful in establishing good relations with teachers. Parents who do not get involved, quite apart from the practical difficulties of transport, care of other children or work commit- ments, may feel that they lack the knowledge to make a useful contribution, or that the teacher is unlikely to listen to their views. They may actually fear school due to bad experiences in their own childhood (Bridge, 1981). Without specific encour- agement, therefore, it is possible that parents may not voice their concern that their child’s abilities

are being under-rated and, instead, eventually come to accept the teacher’s conclusions. Fuller participation would require establishing a relationship based on mutual respect, sharing information and skills as well as feelings of doubt, satisfaction and so on (Cunningham & Davis, 1985, Mittler & Mittler, 1983). This might require suspension of disbelief, at least temporarily, by teachers in order to ‘test out’ the claims of the parent.

The illustration presented here is not a full and detailed account of why parenvteacher partnerships work. It is however a very powerful argument for why the formation of such partnerships should be thoroughly investigated.

Acknowledgements I would like to thank Hazel Qureshi, Chris Kiernan

and Tricia Sloper for their helpful comments during the preparation of this article. I would also like to acknowledge the Department of Health who funded the work on which this paper is based.

REFERENCES Atkin, J., Bastiani, J. and Goode, J. (1988) Listening

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Barton, L. and Moody, S. (1981) The value of parents to the ESN(S) school: An examination. In L. Barton and S. Tomlinson (eds) Special Education: Policy, Practice and Social Issues (pp. 133-148). London: Harper and Row.

Bastiani, J. (1987) From compensation ... to participation? A brief analysis of the changing attitudes in the study and practice of home-school relations. In J. Bastiani (ed.) Parents and Teach- ers, 1: Perspectives on Home-School Relations. Windsor: NFER-Nelson.

Bridges, D. (1981) It’s the ones who never turn up that you really want to see: The ‘problem’ of the non-attending parent. In T. Elliot et al. (eds) School Accountability (pp. 96-108). Oxford: Blackwell.

Brown, A. and Hepple, S. (1989) How Parents Cope: Caring for a Child who has a Handicap. Barnardo’s.

Cunningham, C. C. and Davis, H. (1985) Working with Parents: Frameworks for Collaboration. Milton Keynes: Open University Press.

Cunningham, C. C. and Sloper, P. (1978) Helping your Handicapped Baby. London: Souvenir Press.

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Gillberg, C. (1990) Autism and pervasive developmental disorders. Journal of Child Psychology and Psychiatry 31(1), 99-119.

Hewett, S. (1976) The Family and the Handicapped Child. London: Allen and Unwin.

Mittler, P. and Mittler, H. (1983) Partnership with

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Pugh, G. (1981) Parents as Partners: London: National Children’s Bureau.

Rutter, M., MacDonald, H., Le Conteur, A., Harring- ton, R., Bolton, P. and Bailey, A. (1990) Genetic factors in child psychiatric disorders 11: Empirical findings. Journal of Child Psychology and Psy- chiatry 31(1), 39-83.

Rutter, M. and Schopler, E. (1987) Autism and pervasive developmental disorders: Concepts and diagnostic issues. Journal of Autism and Develop- mental Disorders 17(2), 159-86.

Sandow, S., Stafford, D. and Stafford, P. (1987) A n Agreed Understanding? Parent-Pro fessional Communication and the 1981 Education Act. Windsor: NFER-Nelson.

Sloper, P. and Cunningham, C. C. (1991) Home-school links for children with Down’s syndrome: Mother’s views. Educational Research 33(1), 42-54.

Tinbergen, N. and Tinbergen, E. A. (1983) ‘Autistic’ Children: New Hope for a Cure. London: George Allen & Unwin.

Welch, M. G. (1983) Retrieval from autism through mother-child holding therapy. In N. and E.A. Tinbergen (eds) Autistic Children: New Hope fo r a Cure. London: George Allen & Unwin.

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Parental Input in Education: An Illustration