Seminar 1 –
Concepts and Definitions
Sheila Henderson:
Institute of Education, London
Since this was the opening talk of the ESRC Seminar Series, organised by David, my objective was to set the scene for the more detailed discussions of specific topics, which were to follow over the coming months. The talk can be summarised under following headings:
LABELS. The talk began with a plea for retention of the term DCD. My main reason for this was a pragmatic one. Whatever criticism one might have of the term DCD, it is too soon to overturn the decision of the London Consensus meeting. As everyone attending the seminar knows the term, DCD, is now well established in the research literature and is easily understood by both laypersons and professionals. Also, three other reasons given by Hart in 1999 in her discussion of cerebral palsy are still relevant:
- Continued confusion about terms and their definitions can frustrate scientific research by leading e.g. to inadequate and inconsistent criteria for defining samples.
- The use of particular terms in particular contexts influences the allocation of resources and therefore, may affect the welfare of children. In the UK, we are only just making headway on acceptance of the term DCD. It would be foolish to change tack at this point in time.
- Terminology matters in relation to the collection of official statistics, which inform policy making, nationally and internationally. The advent of Clinical Governance and evidenced-based practice models in both Health and Education in the UK has highlighted the need for a nationally standardised language and system of classification. Recently, the NHS and the USA have agreed to combine resources to produce a new, combined version, of SMOWMED and Read Codes II. (We should have an input to this process?)
DCD -A SEPARATE SYNDROME? Having taken one stance, I then did an about turn and re-opened the debate on whether DCD exists as a separate syndrome at all. A few well-known studies were reviewed before presenting a number of options that were currently open to us (i) reject the status quo and go for ABD (ii) accept the status quo as it is, with its implications for neat clearly separable "boxes" or (iii) accept the status quo with the proviso that more attention needs to be paid to the theoretical and practical implications of overlap between the whole gamut of "specific" learning difficulties. Perhaps not surprisingly, I suggested we adopt option (iii). One strong reason for this is that there is still so much to learn about movement difficulties, that we do not want to loose the opportunity to shine a spotlight upon the area - and having a name helps!
DSM CRITERIA - C AS A SPECIAL PROBLEM. Since the application of criterion A and B were to be dealt with in depth in later seminars, I focussed the next part of my talk on some of the theoretical and practical issues raised by the wording of Criterion C. In the introduction to DSM IV the following statement is made: "The current state of our knowledge of childhood disorders rules out reference to aetiology or pathophysiology."
So, how are we to conceptualise developmental disorders in this context? - Are we to ignore any knowledge of aetiological factors, which are known to play a part in movement disorders in children? Perhaps from a practical point of view we should.
However, in my talk, I presented a series of case studies of children, which
raised a range of practical issues concerning the diagnosis of DCD, some
of which have a bearing on aetiology/pathophysiology and their role in the
process of differential diagnosis. For example, the particular children I
described had made their way to a hospital setting by various routes. In
all cases, diagnosis of DCD/Not DCD had involved several professionals, some
with very specific skills and knowledge. So, the kinds of questions I raised
were - who makes decisions in the UK today? Who should be involved in the
diagnostic process generally? How might health and education work together?
and Can we come up with a list of "red flags" or critical signs
that might alert (but not worry) teachers or other educationists.
ANOTHER FORAY INTO WORDS AND THEIR MEANING. An opportunity to attack the
use of the word Dyspraxia cannot be missed….. So I took it! More seriously,
it is useful to revisit issues from time to time and the confusion surrounding
the term dyspraxia was very evident in the discussions that took place after
my talk. There is clearly some symptom/deficit in these children that a few
die-hard professionals feel needs that name - but no one was very clear about
what it was or how it should be assessed.
FROM CORE DEFICITS TO DIAGNOSTIC SYSTEMS. In a relatively new field like DCD, there is a danger of those involved becoming too inward-looking. As a way of combating this, I thought it might be useful to compare the development of thinking about the diagnosis of comparable childhood condition. Using autism as my example, I examined some of the issues discussed in relation to the diagnosis of autism and found them to be remarkably similar to those being debated in our own field. For example, one question I posed was whether we might be able to suggest, as a working hypothesis, an equivalent to the 3 core deficits, now accepted as the key components of autism. There was some discussion of this possibility.
In summary, I pointed to five problems that are common to DCD and autism, and which will keep researchers busy for some time to come:
- There are no biological markers for either condition.
- Genetic factors, if relevant, are still poorly understood
- Screening is problematic
- There is an emerging clinical picture over time, which has implications for assessment, intervention etc.
- There are no miracle cures!