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Journal of Intellectual Disability Research pp © Blackwell Publishing Ltd 9 Blackwell Science, LtdOxford, UKJIRJournal of Intellectual Disability Research -Blackwell Science Ltd, Original ArticleDevelopmental perspective in persons with intellectual disability – part IIA. Dosen Correspondence: Anton Dosen, Torenstraat , AR Helvoirt, the Netherlands (e-mail: [email protected]). Applying the developmental perspective in the psychiatric assessment and diagnosis of persons with intellectual disability: part II – diagnosis A. Dosen University of Nijmegen, Nijmegen, The Netherlands Abstract Background The descriptive phenomenological cat- egorical psychiatric diagnostic systems that are cur- rently being used in the field of intellectual disability do not adequately provide for the special needs of persons with intellectual disability. Many relevant diagnostic questions are left unanswered or are only partially accounted for. This is particularly true for persons with low developmental levels. Method A solution to these stumbling blocks is sought in enhancing the contemporary categorical diagnostic systems by also applying methods derived from the developmental perspective. Result By taking the levels of emotional and person- ality development, in addition to other developmental aspects into account, the clinical picture becomes more comprehensible and explainable. Conclusion The integrative diagnosis that results from this combined approach provides an insight into the processes that have led to the disorder and enriches one’s understanding of the presentation form of the disorder. This diagnosis is process- rather than symptom-oriented and is particularly useful with persons who have a low level of psychosocial development. Keywords developmental perspective, diagnosis at low developmental levels, integrative diagnosis, intellectual disability, psychiatric diagnosis Introduction Generally speaking, the most prevalent approach to the psychiatric diagnosis of persons with intellectual disability (ID) is the traditional psychiatric phenom- enological descriptive categorical approach repre- sented by the Diagnostic and Statistical Manual of Mental Disorders (DSM) and International Classifi- cation of Diseases (ICD) diagnostic systems. The application of this approach has been strongly sup- ported by recent Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Learning Disabil- ities publications (Royal College of Psychiatrists ) and the Practice Guidelines for the Assessment and Diagnosis of Mental Health Problems in Adults with Intellectual Disability (Deb et al. ). The National Association for Dually Diagnosed is prepar- ing a Diagnostic Manual based on the DSM diagnos- tic system. Scientists who support the application of these diagnostic systems maintain that no significant problems are to be expected when applying phenom-

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Journal of Intellectual Disability Research

pp ‒

© Blackwell Publishing Ltd

9

Blackwell Science, LtdOxford, UKJIRJournal of Intellectual Disability Research-Blackwell Science Ltd, Original ArticleDevelopmental perspective in persons with intellectual disability – part IIA. Dosen

Correspondence: Anton Dosen, Torenstraat , AR Helvoirt, the Netherlands (e-mail: [email protected]).

Applying the developmental perspective in the psychiatric assessment and diagnosis of persons with intellectual disability: part II – diagnosis

A. Dosen

University of Nijmegen, Nijmegen, The Netherlands

Abstract

Background The descriptive phenomenological cat-egorical psychiatric diagnostic systems that are cur-rently being used in the field of intellectual disability do not adequately provide for the special needs of persons with intellectual disability. Many relevant diagnostic questions are left unanswered or are only partially accounted for. This is particularly true for persons with low developmental levels.Method A solution to these stumbling blocks is sought in enhancing the contemporary categorical diagnostic systems by also applying methods derived from the developmental perspective.Result By taking the levels of emotional and person-ality development, in addition to other developmental aspects into account, the clinical picture becomes more comprehensible and explainable.Conclusion The integrative diagnosis that results from this combined approach provides an insight into the processes that have led to the disorder and enriches one’s understanding of the presentation form of the disorder. This diagnosis is process- rather than symptom-oriented and is particularly useful

with persons who have a low level of psychosocial development.

Keywords developmental perspective, diagnosis at low developmental levels, integrative diagnosis, intellectual disability, psychiatric diagnosis

Introduction

Generally speaking, the most prevalent approach to the psychiatric diagnosis of persons with intellectual disability (ID) is the traditional psychiatric phenom-enological descriptive categorical approach repre-sented by the Diagnostic and Statistical Manual of Mental Disorders (DSM) and International Classifi-cation of Diseases (ICD) diagnostic systems. The application of this approach has been strongly sup-ported by recent Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Learning Disabil-ities publications (Royal College of Psychiatrists ) and the Practice Guidelines for the Assessment and Diagnosis of Mental Health Problems in Adults with Intellectual Disability (Deb et al. ). The National Association for Dually Diagnosed is prepar-ing a Diagnostic Manual based on the DSM diagnos-tic system. Scientists who support the application of these diagnostic systems maintain that no significant problems are to be expected when applying phenom-

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enological categorical diagnostics to persons with mild ID. To a certain extent the same is true for persons with moderate ID. The differences in symptomatology, which are usually present among individuals at the low developmental levels, can be significant but may be resolved by means of introduc-ing behavioural equivalents for particular DSM or ICD diagnostic criteria. It is obvious that practitio-ners in the field of ID need an approach that is identical to the classification systems used in general psychiatry. This would be familiar to all psychiatrists so it would make the communication between pro-fessionals easier. At the same time, it would also provide for collective ground and facilitate the scien-tific research of this population.

Various developments that are currently being made in general psychiatry have given rise to ques-tions relating to the reliability and validity of the contemporary diagnostic systems (Praag van ; Keenan & Wkschlang ; Kendell & Jablensky ). Obviously, the advances taking place in neu-roscience, in addition to the creative relationship being upheld between different professional disci-plines, have challenged the traditional theoretical underpinning of psychiatric diagnostics.

The attempts being made to change the diagnostic paradigm in general psychiatry, on the one hand, and the increasing desire of professionals in the field of ID to improve our understanding of the processes that lead to psychopathology, on the other, have led to a search for new diagnostic approaches that are more readily applicable to this population.

In our practice we make use of the developmental perspective of psychopathology and apply the tradi-tional phenomenological categorical approach as well. In addition to the bio–psycho–social dimensions, a fourth dimension, the developmental dimension (see Part I – assessment [pp. – in this issue]) has been added. In doing so, the emphasis is placed on the personality development of individuals with ID.

In accordance with the advocates of developmental psychopathology and biological psychiatry (Sroufe & Rutter ; Cicchetti & Toth ; Harris ; Bradley ; Praag van ), we consider psychi-atric disorders to be the consequence of harmful intrinsic and extrinsic stimuli, which, in turn, cause maladaptive behaviour and malfunctioning of the central nervous system. The level and quality of per-sonality development may play an important role in

the vulnerability of the person and the coping strat-egies he or she uses. It may also be the determinant of the presentation form of the disorder.

Clinical pictures of persons at particular developmental levels

Making use of the assessment approach described in Part I – assessment (pp. – in this issue) to scrutinize hundreds of children and adolescents with ID who functioned at different developmental levels and exhibited behavioural problems (Dosen & Mulder ; Dosen a; ), we identified a number of behaviours that were characteristic of each of the levels of personality development. We called these behaviours maladaptive traits (see Part I – assess-ment, Table [p. in this issue]). In cases of inten-sive and prolonged stress, we saw (particularly at the very low developmental levels) that the maladaptive traits that were characteristic of a certain personality level usually became intensified and were seen as being symptoms of psychiatric illness (e.g. stereotypic movements evolving into self-injurious behaviour, hyperactivity progressing into restlessness and des-peration, irritability becoming aggressive outbursts, etc.). In individuals at the profound and severe levels of ID, we found that the behaviour features were little differentiated, making a limited number of symp-toms. Only a limited number of diagnoses could be established among these individuals (see Table ). At the higher levels of ID (moderate and mild ID), there was more differentiation in the symptoms and more diagnostic categories could be identified (Table ). At the higher cognitive levels, establishing the level of personality development became somewhat trouble-some because often a discrepancy was found among cognitive, social and emotional development. In many of these cases we found that of the three types of development it was emotional development that was the most delayed and that it would usually be the determinant of the symptoms of the disorder. The clinical picture in these cases was atypical but became more comprehensible when descriptive developmen-tal psychiatric terms were used (see case vignettes).

Here are some examples. Marco, a -year-old boy, was referred to us because of his severely impaired behaviour. He exhibited self-injurious demeanour, restlessness and crying, and he also had difficulties sleeping and eating. In addition to this, he constantly

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had diarrhoea. This condition had begun months ago. Different somatic examinations were performed but no relevant findings were revealed.

Marco was known to suffer from profound ID, which was a consequence of prenatal brain damage. The cause of the damage was not clear. He lived at his parents’ home and visited a day care centre for handicapped children. He could not speak and com-municated only by means of a limited number of gestures. When left alone he usually made stereotypic movements with his trunk. Brief episodes of self-injurious behaviour could occur after experiencing frustration.

Our observations and examinations showed us a desperate child who was constantly injuring himself, resting only shortly for soft visual and tactile stimu-lation. His cognitive level was appraised to be months (Bayley Scale) and his social development was at about the same level. His emotional level, however, was found to be lower than months (screened by Schema of Appraisal of Emotional Development [SAED] and Vineland Adaptive Behav-ior Scale [VABS]; see Part I – assessment [pp. – in this issue]). On the basis of the interviews held with

his parents and teachers, we could deduce that his emotional development had been higher before the onset of the disorder, probably somewhere in between the first and the second phase (from to months). His personality development before the onset of the disorder was appraised to be at a level similar to his cognitive and social levels. We consid-ered the ensuing change in emotional level to be a consequence of regression resulting from the child’s present mental condition. Our presumption was that the child had experienced extremely stressful events, which had disturbed his former level of functioning as well as his previous psycho–physiological homeo-stasis. The milieu examination showed us that various events and changes (overdemanding communication training, change of the group, illness of his mother) had taken place in the boy’s surroundings within a relatively short period of time. In our opinion, these changes were extremely stressful for the boy; they were experiences he could not cope with, which, gradually, led to mental disorder.

The treatment strategy was directed towards recre-ating the initial environmental situation and restoring his former manner of interaction. Eight weeks later Marco had recovered and could function in the same fashion he previously had at the day care centre. He received no medication during the treatment.

The symptoms we found in this boy could fit into several DSM diagnostic categories like stereotypic movement disorder with self-injurious behaviour, adjustment disorder and disruptive behaviour disor-der. Reasoning from the developmental perspective and taking account of the environmental circum-stances, we explained the boy’s condition as being a maladaptive reaction to stressful environmental events. As a result of the extended duration of stress, the boy’s condition gradually took on the form of a psychiatric disorder. A loss of the previously acquired social skills ensued and the formerly well regulated psychological and physiological functions were dis-turbed. From the developmental psychiatric point of view the condition was seen as a severe disturbance of his total psychological and physiological function-ing, which resembled a psychotic state (for the inte-grative diagnosis see Table ). A differentiation of the types of psychotic disorder at this low level was very difficult because the symptoms were atypical.

Another case is a -year-old boy who was referred to us because of his annoying, negativistic, attention-

Table 1 Psychiatric diagnoses at different developmental levels

Developmental level < 2 yearsDisorder of social contactStereotypic movement disorderSelf-injurious behaviourPervasive developmental disorderAtypical psychotic disorder

Developmental level 2–4 yearsPsychotic disordersMajor depressive disorderBipolar mood disorderSeparation anxiety disorderOppositional–defiant disorderDiagnoses at the level lower than 2 years

Developmental level 4–7 yearsADHDConduct disorderAnxiety disordersObsessive–compulsive disorderDysthymic disorderReactive attachment disorderDiagnoses at the levels lower than 4 years

Developmental level 7–12 yearsAll diagnoses encountered in the general population

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seeking, oppositional and at times aggressive and destructive behaviour. This behaviour had been present since he was a toddler and the people around him experienced increasing difficulties in managing his behaviour.

The boy lived at his parents’ home (he was the oldest of three children) and went to a special school for children with ID.

Observation of his behaviour showed the boy to be restless, seeking the attention of important others in different ways, positive or negative, having a low frus-tration threshold and exhibiting aggression when frus-trated. Somatic examination revealed no pathological findings. The cause of ID was not known; brain dys-function probably had a prenatal origin. Cognitive tests revealed an IQ of and his social development was comparable to the developmental age of . His emotional development (screened by SEAD and

VABS) was found to be at a developmental age lower than . From these findings we concluded that the boy’s personality development was discrepant and labile: his basic emotional needs and motivations were at the level of a toddler, while his cognitive and social abilities were at a significantly higher level. This made his pattern of interaction with the surroundings very complex and difficult to predict.

According to the DSM IV, a disruptive behaviour disorder was manifest. Implementing the develop-mental perspective, we identified an oppositional–defiant disorder and had the following explanation: the level of the boy’s emotional development was at the stage of individuation and autonomy, but, appar-ently he did not have the proper adaptive behaviour skills at his disposal, which made it difficult for him to partake in favourable experiences. He did not learn the behavioural patterns that would evoke support from his surroundings. Instead, he (with his emo-tional needs) and his surroundings (with their high demands) were involved in an everlasting conflict. This had gradually led to maladaptive behavioural patterns, which had obstructed any further personal-ity development. The developmental perspective helped explain the boy’s problems to the surround-ings, and also offered the ground upon which the treatment approach could be based.

The third case is a -year-old man with mild ID. He was referred because of his dangerous aggressive behaviour. Aggression was becoming an increasingly severe problem for this man and had repeatedly led to psychiatric hospitalisation and the use of high dos-ages of different psychotropic medicaments. The pre-vious psychiatric diagnosis was conduct disorder and antisocial personality disorder. From his developmen-tal history we found that the young man was the only child of a couple with a low socioeconomic status. Early in life he had already been confronted with severe social problems: his mother was mentally ill; his father died when he was years old; and he had frequently been hospitalised for various banal somatic problems. Aggressive outbursts, predominantly directed towards familiar people, began when he was a toddler and increased in severity after puberty.

Somatic examinations revealed no problems. On the WISC-R he scored an IQ of . His social devel-opment was that of a -year-old child while his emo-tional development (as estimated by SEAD an VABS) was predominantly lower than that of a -year-old.

Table 2 Integrative diagnosis

Marco, a 7-year-old boy1. Psychiatric diagnosis

DSM IV diagnosis: Stereotypic movements disorder withself-injurious behaviour

Developmental psychiatric diagnosis: Loss of psycho–physiological homeostasis as a consequence of stressful experiences (reactive atypical psychotic state)

2. Onset mechanism: Psychotic reaction has occurred as a result of stressful environmental changes, on the base of an unstable psycho–physiological homeostasis and a beginning of bonding

3. Other aspects:(a) Biological aspects: broadened lateral ventricles in the

cerebrum(b) Neurophysiological aspects: EEG immature, asymmetric(c) Cognitive and learning aspects: M.A. 15 months, reflexive

learning(d) Neuropsychological aspect: not performed(e) Personality development: social development, 6 months;

emotional development, lower than 6 months; personality development, discrepant – between homeostasis and bonding

(f) Personality traits: problems of holding of psychophysiological homeostasis. SIB by frustration

(g) Basic needs: constancy of the surroundings, adequate sensory input, adequate social interactions

(h) Interaction patterns: via bodily and visual contact(i) Existential problems: changing environment, too much

sensory stimuli(j) Environment: not understanding boy’s basic needs,

4. Treatment: establishment of the homeostasis

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Our conclusion was, according to DSM IV, inter-mittent explosive disorder, while according to the developmental psychiatric view, disturbance of aggression regulation as a consequence of an attach-ment disorder.

The treatment directed towards meeting his basic emotional needs yielded favourable results.

Integrative diagnosis

In the case vignettes described above, the DSM diag-noses could not bring an all-embracing understand-ing of the total problem of these individuals into focus, nor did it readily lead to finding the appropri-ate treatment strategy. The developmental perspec-tive, however, was helpful in explaining the symptoms, and the developmental psychiatric diag-nosis aided in improving the understanding of the phenomenological diagnosis. An Integrative Diagno-sis was compounded so that a better understanding of the clinical picture and underlying causal processes (see Table ) could be achieved.

Different authors (Szymanski ; Greenspan ; Sturmey ; Charlot ) have pointed out the necessity of integrating the assessment results that have been derived from different dimensions and dis-ciplines. Like pieces in a puzzle, findings gathered from all sources of examination should be placed into an integrative framework, forming a complete clinical picture. However, similar clinical pictures can be caused by different underlying mechanisms. For a holistic understanding of the person with a disorder, one must have not only a clear clinical picture but also an insight into how the different factors that unfold during assessment interact and how that leads to the disorder. The integrative diagnosis we apply is more of a process- than a symptom-oriented diagno-sis; it attempts to illuminate the pathogenesis and provide a narrative explanation of the clinical picture to all concerned: the patient, the caregivers and the different professional helpers.

Discussion

As emphasized earlier, we found that diagnostic dif-ferentiation became increasingly more difficult as the developmental level decreased. At a profound level of ID (mental age – years) the boundaries between

various disorders were fuzzy and the number of diag-noses that could be established was relatively small. Self-injurious behaviour was found to occur fre-quently while anxiety was difficult to distinguish from anger and rage. It was hard to differentiate between psychotic and major depressive disorders, and dys-thymic disorder could not even be recognized at this low level (Dosen ). When the level of ID was severe (mental age – years), however, we were able to differentiate between psychotic disorders and major depressive disorder. We were able to establish the presence of a bipolar disorder and separation anxiety disorder as well. Our experiences showed us that oppositional–defiant disorder was a disorder that was associated specifically with this level of emotional and personality development (Dosen b). As the levels of emotional and personality development increased, the symptoms became more differentiated, and the various diagnoses could be distinguished with more ease. At the mental age level of – years (mod-erate ID), various anxiety disorders, dysthymic disor-der and other diagnoses became discernible while at the lower levels they were difficult to identify or uni-dentifiable as such at all (Dosen ).

In cases in which there was a striking discrepancy between emotional and cognitive development, we usually found that the emotional level was the deter-minant of the onset mechanism and presentation form of the disorder, like in the case of the young man with aggressive behaviour described above. Sim-ilar problems of attachment development and the corresponding behaviour disorders have been described by different authors (Carlson & Sroufe ; Clegg & Lansdall-Welfare ; Izard & Harris ; Greenspan ; Bradley ; Briggs-Gowan et al. ; Lavigne et al. ).

In our opinion, a number of disorders like atten-tion deficit hyperactivity disorder (ADHD), conduct disorder and antisocial personality disorder, which at the moment are frequently diagnosed on the basis of behavioural phenomena, are deemed to be viewed through the visor of the developmental psychiatric approach and seen in their relationship to different developmental aspects. Among others, brain matura-tion certainly deserves extra attention (see also Aman et al. ; Lavigne et al. ).

The conceptualization of challenging behaviour, in our opinion, has to contend with a lack of real under-standing of the developmental aspects and interac-

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tional processes of these individuals. Recent investigations carried out by a number of scientists (Clegg & Sheard ; Janssen et al. ) have made it evident that various forms of challenging behaviour can satisfactorily be explained by means of the developmental perspective and placed, accord-ingly, into other more relevant categories.

The experiences described above are the chronicles of day-to-day practice in which children as well as adults with ID were observed and treated. They evoke a number of questions regarding the current phe-nomenological differentiation of clinical pictures into particular diagnostic categories in persons with very low developmental levels. In order to make categori-cal classification into specific subtypes of a disorder reliable, apparently, it is necessary that a certain pro-gression in personality development is present. Sim-ilar queries regarding the feasibility of differentiating the symptoms of psychopathology in persons with ID and even among young children who are not intellec-tually disabled have been expressed by different authors (Charlot , ; Glick ; Cummings et al. ; Keenan & Wkschlang ).

Conclusion

The developmental perspective of the assessment and diagnosis of persons with ID, as described here, may be a refreshing addition to the contemporary diag-nostic systems being used in traditional psychiatry. It can enhance the understanding of the processes underlying behavioural and psychiatric disorders, aid in discovering precipitating factors and help clarify the presentation form of the disorders. We consider emotional and personality development to be one of the basic components delegating not only the onset of adaptive and maladaptive behaviour but the onset of mental disorders as well. True insight into emo-tional and personality development is of essential value to the psychiatric diagnoses of persons with all types of ID. Experiences with persons at the low levels of development have made clear that, in itself, the application of phenomenological categorical diag-nostic differentiation is of little relevance to a real understanding of the condition at hand and does not necessarily lead to the application of the appropriate treatment. The developmental perspective may present a better framework explaining problematic behaviours and the developmental psychiatric diag-

nosis may make onset mechanisms visible and symp-toms of the disorder comprehensible. Of course, this approach, as yet not fully matured, gives rise to numerous questions and these in turn beckon scien-tific investigation. In our opinion, priority should be given to the development of reliable and standardized instruments for examining emotional and personality development.

This article has its roots in daily practice. The goals in presenting our experiences are to stimulate inter-collegial discussion, to foster the application of the developmental perspective by practitioners and to encourage the scientific investigation of this field by researchers.

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Accepted January