Inclusive and Supportive Education Congress International Special Education Conference Inclusion: Celebrating Diversity? 1st - 4th August 2005. Glasgow, Scotland

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The relationship between genetic diagnosis,
identification of special educational needs,
pedagogical decision-making and action

Ruth Kershner
University of Cambridge Faculty of Education
rsk21@cam.ac.uk

This paper focuses on the educational implications of new understandings of genetics, particularly in considering the ways in which information about genetic syndromes associated with special educational needs (SEN) is transformed into the knowledge required to inform and guide teaching decisions. The paper and conference presentation refer to information available for teachers about genetic syndromes like Down syndrome and Fragile X, contrasted briefly with teachers’ knowledge about a universal characteristic – gender – which also has biological, psychological and social elements.   The aim is to begin to examine the relevance and utility of genetic information for pedagogical decision-making and action.

The paper focuses on the following questions:

1)   Does a rejection of the ‘medical model’ of special educational needs mean that genetic information about pupils is irrelevant to teachers?

2)   What is or should be the educational use of genetic information about pupils?

3)   How does genetic information about pupils help (or hinder) the processes of pedagogical decision-making?

4)   How can information about genetic factors best be presented and analysed when considering the implications for identifying and responding to pupils’ educational needs?

Does a rejection of the ‘medical model’ of special educational needs mean that genetic information about pupils is irrelevant to teachers?

In educational theory and practice the traditional medical model of special educational needs (SEN) has run its course over the last century, and it has been rejected fiercely by those focusing primarily on the development of inclusive schools for all pupils.   The possibility of engaging in straightforward diagnosis, categorisation and prescription for certain types of ‘handicap’ was challenged in the UK from the 1970s by a growing understanding of the inevitable overlap between categories, the potential problems of labelling, and the inadequacy of attempts to differentiate special educational provision for particular individuals and groups of pupils without infringing on educational progress, equal opportunities and human rights.    One of the main problems of diagnostic and categorical approaches has been seen as the tendency to ‘fix’ learning problems deterministically within the child, and it is interesting that current research such as that by Hart et al (2004) on the approaches of teachers who avoid ‘ability labelling’ can even now in 2005 seem to be so refreshing, insightful and necessary.

However, recent years have seen a revival of interest in identifying types or patterns of SEN associated with increasingly socially visible syndromes such as dyslexia, dyspraxia, autistic spectrum disorders (ASD) and attention deficit hyperactivity disorder (ADHD). All of these are primarily identified in clinical or behavioural terms rather than through medical tests, but there is a great deal of research interest in causal mechanisms at biological level and in physical and medical interventions, producing a growing body of information for teachers and parents about remedies such as fatty acid supplements (Stordy, 2005).   The increasingly sophisticated scientific understanding of genetics has led to some strong support for incorporating this knowledge into special education and services for adults with learning disabilities (Barr, 2002; Denckla and Cutting, 2004; Hodapp and Fidler, 1999).   Attention is also given to the wide range of issues associated with genetic counselling and other uses of genetic information for people with learning difficulties and their families (Barr, 1999; Cunningham et al, 2000; Ward et al, 2002).   Yet researchers working in the fields of neuroscience, genetics and educational psychology mainly provide evidence about the potential use of research findings rather than the immediate and direct application of their work to educational practices (Goswami, 2004;   Plomin and Walker, 2003).

Much current research and practice in the field of SEN acknowledges the ways in which certain biological factors may interactively affect (but not determine) children’s development, behaviour and learning in particular contexts.   This belief connects with transactional models of child development and the combination of biological and environmental risk factors (Sameroff, 1995;   Empson, 2004).   A ‘bio-psycho-social’ model has been applied in areas like ADHD as a framework for understanding and intervention, which avoids the ‘unhelpful polarity’ between biological and social explanations of learning and behavioural problems (Cooper, 2005: 128).   Cooper proposes that teachers need to assimilate knowledge about ADHD into their ‘practical theorizing’ and craft knowledge (p.125/132).   This would include the understanding of ADHD as a bio-psycho-social condition in which the institutional structure and practices of school may themselves be implicated. An awareness of the intrinsic assumptions and limitations of schooling may lead teachers to attempt to intervene at policy level. For the most part, however, Cooper argues that an understanding of the cognitive style of pupils identified as having ADHD can help teachers to build effectively on the pupils’ learning characteristics and preferences in classroom activities.   Yet Cooper remarks that the reduction of pupils’ behavioural symptoms through medication may divert the teacher from fully adapting and innovating in classroom practice.   This would seem to support the view that teachers need to understand biological factors and medical interventions at least enough to have an informed discussion about the child with professional colleagues and parents.

The ‘bio’ aspect of ADHD, commonly associated with medication, is not directly in a teacher’s sphere of training, influence or responsibility, yet a bio-psycho-social model implies the need for an integrated view about causal mechanisms and multi-modal interventions. This principle could be applied more generally to pupils identified as having SEN, replacing a simpler medical or bio-medical of SEN.   However it is not entirely clear exactly how the relevant biological information of different sorts can be turned into usable knowledge by teachers, particularly when the genetic or other biological origins can seem very distant from the individual pupil in class.

What is or should be the educational use of genetic information about pupils?

It is possible to map the connections between biological, cognitive and behavioural aspects of development, ‘….revealing what you could know but don’t yet know’ (Morton, 2005:   19). Morton also suggests that the tool of ‘causal modelling’ (ie. representing possible causal links between biology, cognition and behaviour), ‘…enables you to establish both common ground and incompatibility with others with a degree of precision’ (p.19).   However, as Morton points out, a diagnosis of developmental disorders for the purpose of guiding medical treatment or educational intervention does not necessarily require an exact and complete understanding of original causes (p.137-8).   Morton gives the example of the treatment for a broken leg not depending on how the leg was broken - although educational difficulties are not so simple of course.

Genetic differences are particularly problematic in connecting cause, diagnosis, identification of SEN, and decisions about educational provision.   One reason is the diversity of ways in which genes can be combined and expressed for individuals. In her discussion of Williams syndrome, an identifiable genetic condition, Karmiloff-Smith (2002) emphasises the developmental factor in tracing the cognitive and behavioural outcomes for particular children and adults affected in this way – ie. she argues that the mappings between genes, cognition and behaviour are indirect, and the situation at birth does not entirely predict what happens in later life. In connection with this focus on development, and on the associated child-environment transactions, neither quantitative genetic research (e.g. family, twin and adoption studies) nor molecular genetic research (seeking particular gene-trait connections) gets close enough to predicting individual progress and outcomes to provide ‘recipes’ for educational intervention by teachers.   Although Plomin and Walker (2003:10) argue that increasing knowledge about ‘DNA risk indicators’ may begin to be used at least in educational psychology research and practice.  

There may, however, be two main barriers to the informed use of genetic information by both educational psychologists and teachers – depending on the background and interests of the people involved.   One problem is to do with the specialised field of knowledge. Introductory textbooks (e.g. Ringo, 2004) explain the workings of genes and chromosomes with reference to key components like nucleic acids (DNA and RNA) and genetic mechanisms of development in terms of gene expression and changes in genome structure, with detailed accounts of the genetically regulated processes of cell proliferation, programmed cell death, differentiation, and association of functionally related cells.   We have to acknowledge however that this is difficult material for many educators, calling for selection, translation and summary when particular genetic syndromes are discussed (e.g. as found on the Contact a Family website, www.cafamily.org.uk).   

The second barrier could be to do with the linguistic and social aspects of knowledge about genetics.   Terminology can be important here.   For example, the ‘determinism’ of genetic inheritance may be over-emphasised in the use of language. Richardson (1998: 58) argues that genes do not ‘express themselves’, but they ‘….are best thought of as resources utilised by a dynamic system in a regulated manner.   What we inherit from our parents is not just a set of genes, and not a genetic programme, but a whole developmental system which utilises genes as resources’.   More generally, in the public view there may be associations between different aspects of genetics which influence the ways in which genetic information is received by teachers.   Durant et al (1996) found that public responses to the Human Genome Project showed dimensions of promise (e.g. forensic medicine; genetic therapy) and concern (e.g. eugenics; discrimination), as well as references to degrees of controllability.    Durant et al comment that ‘ (p)ublic understandings of science are important, not least because they are capable of exercising a powerful influence over both scientific research and clinical practice’ (p. 236).   It may be reasonable to assume differences between teachers in their understanding, use of and demand for genetic information about pupils in the context of wider beliefs and concerns about genetics in society as well as the immediate professional expectations and responsibilities.

How does genetic information about pupils help (or hinder) the processes of pedagogical decision-making?

In educational terms the match between pupils’ characteristics and effective teaching strategies has always been loose, although there is still a keen interest amongst teachers in frameworks which may help to identify and respond to pupils’ individual characteristics and preferences (cf. the current focus on ‘learning styles’ and ‘multiple intelligences’ in many British schools).   In the field of SEN, research evidence about the effectiveness of different strategies is not clearly matched to particular individuals and groups of pupils, although general information is available on which approaches may help beyond ‘ordinary teaching’ (e.g. Brooks (2002) on literacy difficulties).

There is a more general question about what, if anything, is ‘special’ about teaching pupils identified as having SEN, including critical discussions of the ‘special’ concept itself (Adams, et al, 2000).   Reviews of research on teaching strategies for pupils with special educational needs (SEN) have acknowledged that certain individuals or groups of children may need adaptations to general teaching approaches but not qualitatively different methods, ie. there may be variations in the intensity of application (Lewis and Norwich, 2005) and a need to understand how strategies are best combined for pupils with SEN (Davis and Florian, 2004).   Questions therefore arise about the basis for these adaptations, including the degree to which such decisions depend on teachers’ knowledge about patterns of strengths and weaknesses typically associated with identified syndromes.    For example, how might research on the reading strategies of pupils with Down syndrome influence a teacher’s approach to working with a specific pupil identified in this way?    How might this compare to knowledge that a pupil has been identified as dyslexic, usually with assumed rather than clear biological origins?

One way to gain insight into teachers’ use of any personal information about pupils is to consider a universal characteristic such as gender.   In spite of the gap between biological sex and social constructions of gender, this is on the whole a strongly defined and differentiated category in education, to the extent that concerns are regularly expressed about boys’ and girls’ relative levels of achievement.   A recently completed DfES research project on Raising Boys’ Achievement included an element focusing on gender in the special school context (Kershner and Bearne, 2004).   The special school teachers involved in this research all emphasised their long-term focus on pupils as individuals, incorporating a complex understanding of relevant social, psychological, educational, behavioural and health-related aspects of their development. However, their agreement to participate in the research involved a willingness to ask questions about gender factors in their own schools – balancing awareness of group trends and shared characteristics amongst pupils with unique knowledge of individuals.

There has long been awareness of the proportional over-representation of boys in special education, but – unlike in mainstream schools – gender has not commonly been a factor seen to be notably relevant to teaching and learning the special school setting.   Yet when the special school teachers began to consider ‘boys’ achievement’, all were able to ask pertinent research questions either about particular groups of boys or about gender as a general issue in that setting.   For example, three schools focused on small groups of boys in Years 9-11, developing strategies for enhancing self-esteem, improving writing, and opening up opportunities for inclusion.   In one of these schools, when teachers and assistants were asked whether gender is relevant in school, most said ‘yes’. However they gave many different reasons and examples applying to different age groups and subjects, including: opinions about traditional gender bias in some subjects such as design technology; observed preferences for pupils to work in single sex groups; observations of girls ‘taking over’ in some practical activities;   and beliefs about boys’ independence, motivation, competitiveness, need for physical activity, and reluctance to engage in new experiences such as the sensory nature table.   All the staff who felt that gender is relevant to teaching and learning could identify the strategies they use in response – ranging from modelling, encouragement and class discussion to more direct and specific interventions such as regrouping pupils, targeting rewards, and using visual approaches and ICT. The impression is that gender is embedded in the thinking of many special school staff, but that it is closely integrated with the other knowledge that guides each person’s strategic decision making and action in school.   It is only when this practical knowledge is targeted, analysed and shared that gender may emerge as a common concern appearing in different guises.

This example of gender in the special school setting may help us to understand the ways in which biological information about pupils is turned into pedagogical knowledge in school.   Gender is generally very visible as a means of distinguishing pupils in any school setting.   Its biological origins are hidden, although many adults and children in society have a basic awareness of x and y chromosomes.   Its sociocultural associations may be taken for granted until brought into focus, depending in school on whether other aims and values predominate (e.g. contrast the aims of raising overall standards of attainment with focusing on pupils as individuals).   In some contexts it can be more simply a matter of scale - ie. sheer numbers of boys and girls in larger schools allow stronger overall generalisations about gender with some flexibility about individual expression to avoid stereotyping. Gender may be associated with common assumptions and evidence about the implications for teaching and learning, even though these are bound to apply to some boys and some girls, not all (a point very evident in mainstream schools).

So in working with boys and girls, teachers are involved in transforming a general, often highly socialised, perception and knowledge of ‘gender’ into an understanding of its application to individual pupils’ learning.   This in turn is influenced by the degree to which gender is seen to matter in the wider school context and whether it is seen as an issue of interest or concern. Focusing on gender may prompt innovation in school (such as single sex teaching; classroom seating arrangements; curriculum development; mentoring; etc), but it cannot be known how each individual boy or girl will respond (or whether something more effective could have been done for them as individuals).   Teachers constantly have to shift perspective between the individual and the group, incorporating the specific and general information about both into their teaching decisions with uncertain outcomes.    We might also expect similar processes to operate with regard to factors like age, ethnicity, social background, and their interaction.

The question then arises about the effect of the additional knowledge that a pupil ‘has’ a genetic syndrome commonly associated with SEN, given that information is communicated and decisions are made by people with different understandings of children’s educational difficulties.

How can information about genetic factors best be presented and analysed when considering the implications for identifying and responding to pupils’ educational needs?

As we see in the examples presented at the conference, information about genetics and SEN can be analysed at different levels and from different perspectives:

•   the language and imagery used

•   the research evidence about causal relationships and developmental aspects

•   the diversity and probability of effects in different contexts

However, teachers’ transformation of this information into the knowledge that can inform teaching depends also on the signficance of the following factors:

•   the degree of ‘visibility’ and physical signs in different syndromes

•   associated social, sensory and medical factors

•   family links (eg. inherited conditions)

•   emotional processes for all involved

•   the credibility and impact of different sources of information

In exploring the relationship between genetic diagnosis, identification of special educational needs, pedagogical decision-making and action it seems appropriate to focus on teachers’ individual and collective knowledge as a mediating factor.   Lewis and Norwich (2005:   210-213) identify four aspects of knowledge which may inform pedagogical decisions:  

• knowledge of the nature of the special needs group
• knowledge relating to oneself as a teacher
• knowledge relating to the psychology of learning
• knowledge of curriculum areas and general pedagogic strategies

They suggest that the first aspect, the nature of the special needs group, will act as a ‘filter’ for the other forms of knowledge.   So the degree to which the nature of special needs group is strongly defined will influence the degree to which the chosen teaching strategy is seen to be very different and specialized. This argument is important if teachers are presented with strong ‘scientific’ knowledge about aetiology, learning and behaviour patterns for whole groups of pupils, such as children with Down syndrome (even though individual differences may soon become evident in day-to-day contact).   One response is to match strongly defined information about genetic syndromes with equally ‘scientific’ information about the operation of risk factors and the nature of child-environment interaction in development – ie. emphasising the relevance of in-depth knowledge of how children develop in context (cf. Lewis and Norwich (2005: 218) on implications for teachers’ professional development).   There is also the relevant knowledge and the skills required for the more general challenge of coping with uncertainty in teaching and responding contingently to pupils in class.   In doing this we may learn from the extensive research that already exists on teachers’ subject knowledge, including work that emphasises the need to develop frameworks which allow the essential conversation about knowledge that is often missing from dialogues between trainee teachers and mentors for example (cf. Rowland, 2005).

Like pupils and their parents, teachers can find themselves at the centre of a loosely constructed network of adults with varied involvement in the identification, assessment and provision for pupils with SEN, and there is need to facilitate mutual understanding and collaboration. For this reason it is necessary to ask about the nature of the relevant scientific and medical information and how is communicated to teachers.   However, this is not a one-way process.   A sociocultural perspective suggests that knowledge is created through joint activity:   ‘…..(h)uman activity produces the tools/artefacts through which it transforms itself’   (Daniels and Cole, 2002: 314).   So a key element of developing understanding of the use of genetic information with reference to the identification of special educational needs, pedagogical decision-making and action lies in teachers’ investigation and sharing of their experiences of individual children’s classroom learning - contributing in this way to wider knowledge about the group in question.

References

Adams, J., Swain, J. and Clark, J. (2000)   ‘What’s so special?   Teachers’ models and their realisation in practice in segregated schools’,   Disability and Society, 15 (2) 233-245.

Barr, O. (1999)   ‘Genetic counselling:   A consideration of the potential and key obstacles to assisting parents adapt to a child with learning disabilities’,    British Journal of Learning Disabilties,   27, 30-36.

Barr, O. (2002)   ‘Developments in genetic understanding:   time to engage with the process’,   Journal of Learning Disabilities,   6 (1)   5-12.

Brooks, G. (2002)   What works for children with literacy difficulties,   Research Report 380, London:   DfES

Cooper, P. (2005)   ‘AD/HD’   chap. 10 in A. Lewis and B. Norwich (eds)   Special Teaching for Special Children?   Pedagogies for Inclusion,   Maidenhead, Berks:   Open University Press.

Cunningham, C., Glenn, S. and Fitzpatrick, H. (2000)   ‘Parents telling their offspring about Down syndrome and disability’,   Journal of Applied Research in Intellectual Disabilities,   13, 47-61.

Daniels, H. and Cole, T.   (2002)   The development of provision for young people with emotional and behavioural difficulties:   an activity theory analysis,    Oxford Review of Educ.,   28, (2/3), 311-329.

Davis, P. and Florian, L. (eds)   (2004)    Teaching Strategies and Approaches for Pupils with Special Educational Needs:   A scoping study,   DfES Research Report 516,   London:   DfES.

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Goswami, U. (2004)   ‘Neuroscience, education and special education’,   British Journal of Special Education,   31 (4)   175-183.

Hart, S., Dixon, A., Drummond, M.J. and McIntyre, D. (2004)    Learning without Limits, Maidenhead, Berks:   Open University Press.

Hodapp, R.M. and Fidler, D.J. (1999)   ‘Special Education and Genetics:   Connections for the 21 st. Century’,   Journal of Special Education, 33 (3) 130-137.

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Kershner, R. and Bearne, E. (2004) ‘Gender and achievement in special schools’   Paper presented at the British Educational Research Association Annual Conference, UMIST, Manchester,   16-18   September 2004

Lewis, A. and Norwich, B. (2005)   ‘Overview and discussion:   overall conclusions’,   chap. 16 in A. Lewis and B. Norwich (eds)   Special Teaching for Special Children?   Pedagogies for Inclusion,   Maidenhead, Berks:   Open University Press.

Morton, J. (2004)   Understanding Developmental Disorders:   A causal modelling approach,   Oxford:   Blackwell.

Plomin, R. and Walker, S. (2003)   ‘Genetics and Educational Psychology’,   British Journal of Educational Psychology, 73, 3-14

Richardson, K. (1998)   The Origins of Human Potential: Evolution, Development and Psychology, London:   Routledge.

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Sameroff, A.J. (1995)   ‘General systems theories and developmental psychopathology’,   chap. 21 in D. Cicchetti and D.J. Cohen (eds)    Developmental Psychopathology, Vol.1   Theory and Methods,   NY:   Wiley.

Stordy, J. (2005)   ‘Fish, fats and the facts’,   Special! (Magazine of the National Association of Special Educational Needs) Spring edition, 17-19,

Ward, L., Howarth, J. and Rodgers, J. (2002)   ‘Difference and choice:   exploring prenatal testing and the use of genetic information with people with learning difficulties’,   British Journal of Learning Disabilities,   30, 50-55.

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