INTERNATIONAL MEDICAL REVIEW ON DOWN S SYNDROME

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1 Rev Med Int Sindr Down. 2012;16(3):44-48 INTERNATIONAL MEDICAL REVIEW ON DOWN S SYNDROME CLINICS AND PRACTICE Therapeutic groups for children with dual pathology: Down s syndrome and autistic traits in Fundació Catalana Síndrome de Down B. Ortiz Guerra Clinical Psychologist, Down s Medical Centre (CMD) of the Fundació Catalana Síndrome de Down and the Therapeutic Care Department (SAT) of the Fundació Catalana Síndrome de Down, Barcelona, Spain Received on November 3, 2011; accepted on January 20, 2012 KEYWORDS Dual pathology; Autism; General development disorder; Psychotherapy Abstract In this article the author places special emphasis on the importance of making a diagnosis of the psychopathology associated with Down s syndrome (SD): the dual pathology. In particular, the diagnosis of autism, included within the general development disorders according to the DSM-IV diagnostic classification. The alarm signals of children with DS in their first years of life, which must be evaluated in depth, are mentioned throughout the article. The different diagnostic classifications are then reviewed with the aim of adapting them to the specificity of DS. Lastly, the methodology and psychotherapy indicated after establishing the diagnosis is discussed Fundació Catalana Síndrome de Down. Published by Elsevier España, S.L. All rights reserved. PALABRAS CLAVE Patología dual; Autismo; Trastorno generalizado del desarrollo; Psicoterapia Los grupos terapéuticos de niños con patología dual: síndrome de Down y rasgos autistas en la Fundació Catalana Síndrome de Down Resumen En este artículo la autora hace hincapié en la importancia de realizar el diagnóstico de la psicopatología asociada con el síndrome de Down (patología dual), concretamente el diagnóstico del autismo, incluido dentro de los trastornos generalizados del desarrollo según la clasificación diagnóstica del DSM-IV. A lo largo del trabajo se enumeran las señales de alarma de los niños con síndrome de Down en sus primeros años de vida, que deberían evaluarse en profundidad. A su vez se repasan diferentes clasificaciones diagnósticas con el intento de adaptarlas a la especificidad del síndrome de Down. Por último, se expone la metodología y psicoterapia indicada tras establecer el diagnóstico Fundació Catalana Síndrome de Down. Publicado por Elsevier España, S.L. Todos los derechos reservados. psicologia@fcsd.org (B. Ortiz Guerra) X/$ - see front matter 2011 Fundació Catalana Síndrome de Down. Published by Elsevier España, S.L. All rights reserved.

2 Therapeutic groups for children with dual pathology: Down s syndrome and autistic traits in Fundació Catalana Síndrome de Down 45 The specific features of Down s syndrome (DS) have always led to the attempt to group together the different individuals who have these. With this attempt, there has not been any space to be able to observe and record the specific aspects of each person, leading to DS becoming a dumping ground where everything fits. As professionals who work with people with DS, we often observe, due to ignorance, the family itself or even other professionals who are not specialists in DS trying to explain certain aspects or behaviours within, or due to the syndrome. This fact has fundamental consequences, as indicated below: 1. It places everyone at the same level, which does not help in discovering their abilities, their way of being and doing. etc., or put another way, their personality that makes them unique and unrepeatable. 2. It leads to not taking any responsibility for certain behaviours that could be problematic for the particular person and/or their environment. 3. In some cases it implies that other disorders susceptible to treatment may not be diagnosed and that they should be treated in the same way as the rest of the population. Any type of associated pathology must be diagnosed in order to take action and adequately treat it. This article focuses on the steps and group therapy used once a diagnosis of dual pathology is established and, in particular, in the diagnosis of autism (included in the classification of general development disorders [GDD] according to the DSM-IV). Garvia (2007) 1 explained that it was in 1999 when Dr. Noell introduced the term dual pathology into Spain to refer to people who, apart from mental retardation, suffered a psychological or psychiatric disorder. The introduction of these groups into the Therapeutic Care Department of the Foundation has involved the following: 1. To make an effort to delimit the diagnosis, adapting it to children with DS, with the aim of having certain criteria available to be able to establish some specific objectives. 2. To design and adapt a methodology and a technique to carry out the sessions. 3. To combine the sessions with children with information sessions for parents in a group in order to help them be aware of the associated disorders and to start to differentiate and implementing strategies designed to help their children and their development. 4. To recompile clinical material (drawings and productions of components) to make an analysis and conduct research. Concept Autism forms part of a group of diseases classified as GDD. The clinical symptoms of GDD are characterised by a severe problem with social inter-relationships and communication that is not associated with the mental retardation that children with DS experience. Autism in the general population has a prevalence of 2 to 6 for every 10,000 children, and is mostly associated with the male sex. In the book, De la A a la Z, published by the Catalonian Down s Syndrome Foundation 2, it specifically states that around 5% -9% of children with DS suffer autism, and that it warns that, initially, the symptomatology can be confused with a developmental delay attributed to disability, a reason why the diagnosis of autism in children with DS is often delayed 3. Our point of view hopes to detect and show the existence of other conditions in the very early stages of life, and the need to approach them at the time and place that they appear 3,4. The development of a child with DS in the first months of life involves an overall delay in maturity that is not associated with difficulties to maintain the gaze, reciprocity and mutual attention. The child with DS is slower in processing stimuli and in transmitting a response, but to observe some of the previously mentioned traits should alert us to establish a suitable psychiatric follow-up. Thus, during the first year of life, the child with DS has to have developed ways of looking for objects, since an excessive passivity in that area is also an alarm sign that the child s development has to be taken into account. When, on observing the child s play, there are no signs of functional or symbolic play, and he/she tends to be excessively involved in the sensory properties of objects, either the sound (repeatedly banging, scraping to feel the same sound) or the texture (warm, hard, soft, cold), this must be carefully assessed. To detect a speech impediment and a use of continuing stereotypes (such as flapping arms) and /or repetitive movements or sounds, the family should be told to consult a specialised professional. Diagnosis There is not much in the literature on DS and autism, nor does the Diagnostic Manual-Intellectual Disability DM-ID 5,6, specify any adaptation criteria, considering that it not necessary to adapt the criteria for the diagnosis of the DSM- IV-TR, since these criteria are suitable behavioural descriptors for persons with speech and communication deficiencies. Once the presence of autistic traits is detected it is particularly useful to refer to the diagnostic classification of the National Center for Clinical Infant Programs 7 in order to be able to group the children in the appropriate therapeutic slots. This classification enables the disorder to be seen from a continuum, and this, in turn, helps to establish criteria and objectives that will guide the therapeutic work performed (individualised therapeutic program). At a clinical level the contribution by Pedreira et al is of interest, as well as the development profiles of autism and psychosis in childhood. The author describes four possibilities from the psychopathological point of view of the development of childhood psychoses (of which autism would be one), taking as a starting point, the most autistic nuclei and/ or autistic movements. The development possibilities indicated are: autism, symbiosis, dissociation,

3 46 B. Ortiz Guerra deficiency. It must be said that none of them is a pure profile, as they have a mixed character in which one aspect may predominate over another. These two classifications had enabled orientative axes to be organised in order to establish two therapeutic groups: on the one hand, groups of children with pattern A and on the other, groups of children with pattern B and C. The National Center for Clinical Infant Program (1998) 7 defines as pattern A to children with no or a slight possibility that they have stereotypes and use autistic objects (making repetitive movements with them to calm down). The pattern B children have possibilities of establishing a momentary relationship, although they have a weak communicative intention. Pattern C includes children with a selective communicative intention according to interests, and characterised by a certain passivity depending on the context. Groups: methodology and technique The Catalonian Down s Syndrome Foundation, sensitive to this problem, has developed dual pathology groups for children with DS who present with an added general development disorder. We emphasise that not to treat these disorders increases the common deficiency aspects of the mental retardation, as well as all the symptoms associated with disconnection and characteristic stereotypes of the disorder. The therapy must be focused on helping mental functioning, which in these cases is the result of the impossibility recognising one s self in a unified image and differentiated from the others, that is to say, the body self. It is about ensuring, using this methodology and technique, that the child may have vivid and thoughtful experiences in the here and now of the group, which helps to gradually dilute repetitive and peculiar behaviours centred on themselves that make a social relationship difficult. The group dynamics are performed once a week and last one hour and a quarter. We have observed that the weekly frequency, adapting the methodology depending on the communication level and symbolic abilities of the group, helps the children to contain their anxieties to the extent that the therapy verbalises and helps connect them with their feelings. It also enables them to be more aware of their needs and their actions, and thus implies an improvement in the awareness of their body and intentionality, of their most basic personal autonomy (drooling, runny nose, sphincters) and improves their communication ability (in the cases of children with pattern B or C). The organisation of informative sessions with the parents in a group is a useful tool to work on differentiating the aspects and behaviours associated with DS and those associated with the disorder. In this way it helps them to understand the mental and behavioural functioning of their children, and as a result, they may be able to take responsibility for their needs. During the process, it is of equal importance that there is contact with the mothers and fathers of the children in the waiting room, to help in the understanding of the behaviours focused on themselves (helping the parents to give meaning) and offer tools to the parents so that they can be closer through talking. Both the weekly sessions in the waiting room, as well as the group informative sessions, are very valuable to encourage mother-child reciprocity, which has become deficient due the complexity of the disorder. As means of an example, we show the clinical material and graphs of the group psychotherapy process of a group of children with pattern B and C below. Example of peculiar repetitive behaviour focused on one s self that shoes the deficiency in reciprocity and in the integration of feelings and emotions «Clara is seated and integrated in the group activity when suddenly a loud noise is heard (as if a neighbour was dragging a piece of furniture). It stops and without looking at us says what is that and later she herself says neighbour. The therapist says that it seemed to frighten and that moment she looks at her in the face and says no. She gets up rapidly and goes to a corner of the room, just below the mirror. Staring at her reflection she begins a difficult to understand verbiage, accompanied by repetitive (stereotype) movements. The therapist is given time to observe and wait: gradually being able to decipher some words, at the same time as starting to understand them she says them out loud. You talk about an enormous head, teeth and black feet You also said something about a wood It seems that someone frightened you and you were afraid. Clara continues with her conversation with herself in the mirror, but has been looking at the therapist while she was talking to herself. One of the children, Matas, speaks of a monster, he picks up a piece of paper and puts it on like a mask And Julian makes a fierce noise, arggg. Now, three of the four components are interacting. After a few minutes therapist tries to incorporate what is going on here and now, trying to give it form by connecting any emotion of fear that arises in Clara caused by the noise that we have all heard and that probably, as she herself says is the noise of a neighbour (she appears to say that probably the mother or another adult should have said it). The therapist says that it seems that the noise that we heard had sounded to Clara like Little Red Riding Hood and the wolf; she had the image of the wolf in her head, it seems that you were telling the story, a very scary story Perhaps you felt afraid on hearing the noise, although you said it was the noise of a neighbour Your friends (and she looks at them saying their names) talk about a monster and scary noises and they are afraid. Clara stops looking in the mirror and says ah, fear and re-joins the group activity». Example of a graphic process after 9 months of weekly treatment: from sensoriality to symbolisation We have collected four photographs (Figs. 1 to 4) that we believe show the representation process that the followed, going from sensoriality at the beginning to symbolisation. In Figure 1 we can see the classic black hole described by Francesc Tustin in In this first session it reflects the

4 Therapeutic groups for children with dual pathology: Down s syndrome and autistic traits in Fundació Catalana Síndrome de Down 47 Figure 1 The classic black hole. Figure 2 Start of representation. The box-face. Figure 3 The human figure or parts of it. Figure 4 The drawing show a verbal exchange and a start of reciprocity between the components. representation vacuum due to the difficulty of establish the symbolic function of thought. Figure 2 is an example of the start of representation, although very primitive and rudimentary. The hole begins to have a shape and a meaning. One of the components of the group re-draws the shape of a box and inside it puts eyes and a mouth. Then he says that it is mummy. Figure 3 shows an example of a session in which all the members represent some part of the body or even some of them with an almost complete human figure, but still with clear signs of fragmentation and dissociation. We conclude with Figure 4, in that the group represent graphically in common and make a verbal exchange with certain reciprocity. At this time of the psychotherapy process the word is already used to express one s self and interact. One of them tells us that it was their birthday. Another sings the happy birthday song. There is a start of interaction. Conclusion Group psychotherapy helps to enrich the communication between components helping to put a name to the emotions and anxieties not integrated within themselves and which live outside oneself (producing conducts that from outside are seen as strange). The capacity of mental representation and symbolisation can be gradually increased, with a decrease in eccentric and repetitive behaviours and improve interaction between the components Children with DS who have autistic traits have the right to health care like the rest of the population in order to develop the functional and mental processes that are involved in this type of disorder, with the ultimate aim of maximising their abilities, especially in communication.

5 48 B. Ortiz Guerra Conflict of interests The author declares not to have any conflict of interests. References 1. Garvía B. Canal down21.org. Fundación Iberoamericana Down 21. Salud biomédica. Salud mental Available at: Geissman & Geissman P. El niño y la psicosis. ParIs: Ed. Dunod; DSM-IV. Manual diagnóstico y estadístico de los trastornos mentales. Barcelona: Masson; Su hijo con síndrome de Down. De la A a la Z. Guía práctica para padres. Barcelona: Antares; Pedreira JL. Signos de alarma de las psicosis infantiles. Reconocimiento por parte del pediatra de Atención Primaria. Anual Español de Pediatría. 1986;245: Manual diagnóstico-discapacidad intelectual DM-ID. Madrid: Down España; National Center for Clinical Infant Programs. Clasificación diagnóstico: 0-3. Buenos Aires: Paidos; 1998.