In Sweden a special organization, Board for Provisions and Services for the Intellectually Handicapped, and a government Act, Support and Service for Persons with Certain Functional Impairments (SFS 1993:387), serve those who are intellectually handicapped, autistic, have a condition resembling autism, and others. The Act does not infringe on any of the rights which an individual may have by virtue of any other Act. The activities pursuant to this Act promote equality in living conditions and full participation in the life of the community for those who have an intellectually disability, are autistic, and others. The objective is to make it possible for the person concerned to live as others do. The activities pursuant to this Act are to be conducted in cooperation with other public bodies and authorities. The activities concerned are based on respect for an individuals right to self-determination and privacy.
This Act leads, among other things, to increased demands upon the psychiatric clinics concerning different achievements for persons with an intellectually disability and psychiatric disorders.
Intellectual disability and psychiatric disorders, problems
A psychiatric disorder and intellectually disability does not imply only two problems within a person, but often to an enormous interaction effect, which demands double competence for staff members at both the psychiatric clinic and at the services for intellectually disabled persons. Ways to collaborate must be found. There is a great need for knowledge about the group of people who have both an intellectually disability and a psychiatric disorder. Knowledge of their problems often is defective and there is confusion within the mental health services and the mental retardation services about who has the responsibility for these persons. The knowledge of symptomatology and treatment often is incomplete.
Persons with intellectual disabilities have the same emotional problems as do others. In fact, research shows that persons with intellectual disabilities may be more vulnerable than others to develop psychiatric disturbances. Historically professionals believed that persons with intellectually disabilities enjoyed immunity from emotional stress and psychiatric disorders (Fletcher, 1993). Maladaptive behaviours were perceived as a manifestation of the condition of intellectually disability, and not as a possible manifestation of a psychiatric disorder. A person with a mildly intellectual disability was characterised as worry-free and therefore mentally healthy. A person that had severe intellectual disability could not verbally express their feelings and was then thought as being exempt from emotional stress.
For the child with intellectual disability, emotional development often occurs in a biologically more mature body. The intellectually disabled child often needs a longer time to differentiate self from the mother, the mother from other persons, and to develop self- and object- constancy. As the development advances in time, these children will be more vulnerable for expectations and reactions from the surroundings. The development steps may be more difficult to see and enjoy when they occur several years later then what one expected.
People with mild intellectual disabilities reach the separation phase at one year of age, and at IQ 50 the individuation phase occurs at 2-6 years of age (Levitas, 1997). Different abilities that are delayed in development, such as mobility, communication, perceptual maturity, and cognition, can impair growth and influence the childs self-esteem. When emotional development is delayed in a person with intellectual disability, those in the surroundings may find it hard, for example, to understand the childs need of closeness, which can cause insecurity.
Initially, the illusion of the child and the mother as a union is created so that the child doesnt need to experience all pain from separation. Under best circumstances the experience of separation and frustration is introduced with tolerable dosages. A gradually increased degree of separation and frustration encourage learning and development. Disillusion must be introduced so that the person can develop. It is hard to disillusion your child, especially when the child is handicapped (Sommarström, Rosén-Sverdén, & Ekwinska, 1993), but if disillusion does not occur, this can lead to a feeling of omnipotence, remaining in a life with fantasies and dreams.
There is a risk that people with intellectually disabilities will remain in an unnecessarily long dependency because of the inability to tolerate sad feelings and dysphoria, and that they wont dare to take the next step in separation and individuation development. This may lead to lack of optimal advance of cognitive development. A person with an intellectually disability might have difficulties in verbalizing different feelings because of inability to differentiate feelings, which even can lead to difficulties in understanding other peoples feelings and wishes. Instead of being aware of these, the person acts out the affects in different ways, which in turn leads to lack of development of symbolization ability.
An intellectually disabled child can develop disturbances because of the handicap, no matter how good his/her care may be (Zenker, 1993). There is a risk that the intellectually disabled child may develop relationship disturbances because of increased parental difficulty in raising a handicapped child. Intellectually disabled children may not be able to make an accurate inquiry and/or might have a delay with their question. which may lead to others not understanding what the child means. Perhaps a distinct answer that the child can understand is not given. If questions dont confirmed, a disturbance that is called borderline pathology may develop. Among non-handicapped people, 5% are said to have that disturbance. It probably is more frequent among people with intellectually disabilities, even if it not is diagnosed (Zenker, 1993). All information available on borderline disturbances is applicable concerning people with intellectually disabilities with these difficulties.
Early disturbance affects the individuals experience of himself/herself and of the surroundings, which leads to disturbed ego structures and ego functions, such as, for example, a poorly harmonic identity, frequent bad control of impulses, and/or difficulties tolerating loneliness. There are reasons to believe that persons with an intellectually disability are more apt than others to be exposed to frustrations, conflicts, and pressure by the attitudes and reactions to their cognitive handicap from others (Menolascino, 1990). Experiences of being expelled, over protected, and/or isolated can be seen as important elements in developing psychiatric disorders.
Several reports (Hollins,1990; Sinason, 1986, 1988, 1992; Sommarström et al., 1993; Spensley, 1985; Zenker, 1993) have in a convincing way shown that a handicap excites much pain, depression, and feelings of loss of normality. These and other feelings might influence both cognitive and emotional abilities, which may lead to development of what Sinason calls secondary handicap. Because of the secondary handicap(s) the person might appear as more handicapped then what she/he actually is. Secondary handicap can, for example, be seen as impairment of ego functions, emotional expressions, relations, communication, body language, impulsivity, and curiosity, but also as increased aggression and self-destruction. Psychotherapy might lead to a reduction of secondary handicaps and support a personal development. Sinason means that what is changing during the first year of psychotherapy can be seen as secondary handicap. Sinason describes three groups of secondary handicap: secondary handicap as a defence against trauma, mild secondary handicap and opportunist handicap.
Psychotherapy with intellectually disabled persons.
Symington (1981, 1993) felt that in the intellectually disabled person an active force blocks the development of intelligence. By this he meant that intelligence could be a threat to the person when emotional problems are also present. Emotional problems can influence the use of intelligence. Symington describes the myths that a good IQ is necessary for psychotherapy to be effective, something he definitely rejects. Symingtons experiences indicated that persons with intellectually disabilities reached changes faster than other people.
Spensley noted in 1985 the danger inherent in classifying of people from IQ-scores, since this form of classification doesnt consider etiology or potentials for further development. IQ scoring has led to emphasis on training to compensate for the supposed loss of functioning and to training for development. Spensley means that staff members who work with intellectually disabled persons and the persons themselves would benefit from the introduction of a psychoanalytic approach to the problems of care and management, and that training and education should not be as necessary in regard to the emotional development.
Sternlicht (1965) writes in his article about the crucial error that has been made when one believes that psychotherapy demands (at least) normal intelligence. Sternlicht thinks that different therapeutic techniques may be used that are not limited by verbal abilities, such as finger-painting, music therapy, dance therapy, drawings, play therapy, psychodrama, ego-supportive therapy, and relationship therapy.
Sinason (1992) is of the opinion that psychotherapy treatment is possible even if the intelligence is limited. All behavior has a meaning, and it is the therapeutic work to understand and translate thisto try to help the intellectually disabled person to recover the meaning with his/her life. The therapy can give possibilities to get rid of the ability of symbolization by listening, trying to interpret, and putting words on what is said on a non-verbal level.
The therapist interprets gestures and behaviours, then the client shows by, for example, changed carriage and facial expression if the therapist have made the right interpretation. The aim of psychotherapy is to increase the ability to acknowledge, stand, and express ones feelings and thereby support the inner curative forces. By getting help to put words on ones feelings and to be able to talk about ones experiences and life history together with another person, the psychic well being can increase and lead to a better quality of life. Sinason means that the possibility for people with intellectually disability to utilize psychotherapy not only involves the ability of the intellectually disabled person or his/her cognitive level, but also in high degree deals with the ability of the therapist. In all psychotherapies we must meet the person where he/she is, and the first step is to establish contact and attachment.
By understanding the unconscious psychological aspects that influence the handicap it is possible to work with psychoanalytic psychotherapy with persons who have an intellectually disability. According to Sinason, psychotherapy can influence the emotional understanding but not the general intelligence. Psychotherapy might give the person the possibility to function in a better way, both cognitively and emotionally. To get in touch with feelings one earlier has avoided makes a human being whole and helps prevent functioning from a false self or a handicapped personality. Development and the ability for empathy work in parallelwhen a persons gets in touch with someone elses sadness and sorrow, then he/she becomes aware of such feelings inside himself/herself. Disturbances in thinking might aggravate the emotional object constancy and the development of mutuality in relations with others.
The more severe the handicap, the greater need to work with and understand countertransference and the means of communication that the person uses with the therapist.
One of the two main purposes of the project was to develop a collaboration between the Psychiatric Clinic and the Board for Provisions and Services for the Intellectually Handicapped in Lund. Through processes of supervision and education for staff within the two organizations, the project has attempted to reduce feelings of powerlessness and insecurity in respect to methods to best provide help for persons with intellectually disabilities that also have psychiatric disorders.
The other main purpose of the project was to provide psychoanalytic psychotherapy to seven persons with intellectually disabilities and psychiatric problems and to determine if secondary handicap would be diminished after 1½ years of treatment. This period would be enough for the purpose of the study, but all therapy patients have been offered continued psychotherapy treatment after the study was completed.
Selection of subjects
The project group made the choice of clients for the project with consideration of the following criteria:
The person with an intellectually disability had psychic suffering and had psychiatric problems
The individuals own willingness to participate
In some situations people close to the client (parents, staff members) had noted the need for psychotherapy
The seven subjects (four women and three men) were all between the age of 20 and 40. All but one has grown up with their biological family. They have a mild, moderate or severe mental retardation (IQ 35 - 58). All the clients have had psychiatric diagnoses such as MBD, psychosis, depression, autistic behaviour, behavioural disorders, and/or obsessive disorders.
Psychotherapy: The seven persons, all with intellectually disabilities, were offered psychoanalytic-oriented psychotherapy once a week during the1½ year duration of the project. Psychotherapy can be seen as a translation work, and different behavioural disturbances as messages. The aim of psychotherapy is to increase the ability to acknowledge, put up with, and express ones feelings, and thereby support the inner healing forces. The therapy might give opportunities to eliminate symbolization ability by listening, trying to interpret, and put words to, what is being communicated on a non-verbal level. Psychotherapeutic treatment can help the client to reach connection and meaningfulness. Different ego-abilities may be strengthened so that the person might develop increased independence.
Education/Training (For all): From November 1994 through January 1995, and in March, 1996, there was a period of education for interested staff from the Mental Health and the Mental Retardation services, including lectures about psychotherapy with persons who have an intellectually disability. There have also been seminars about diagnosis of psychiatric disorders in intellectually disabled persons during October and November 1997. Approximately 600 people attended the lectures. The content of the lectures was documented and these notes have been distributed to all participants.
Measuring instruments: The individuals were tested before the psychotherapy begun and retested after 1½ year of psychotherapy by consultants not involved with the actual treatment. The documentation of secondary handicap was done continuously during the project period, and was based on four respondents: therapists, parents, staff at day centers, and group home staff.
WAIS - R: This cognitive test consists of a series of tests that measures different aspects of cognitive ability.
DMT (Defence Mechanism Test; Kragh 1969) uses tachistoscopic exposure (i.e. short-term visual presentation) of two given picture themes. The exposure time is varied from 10 to 2000 ms (milliseconds) in a geometric series of 20 steps. The pictures are exposed once at each exposure time beginning at 10 ms. Subjects are asked to report verbally everything they see and to make a simple drawing after each exposure. The experimenter writes down the subjects verbal report. The test series is discontinued once the subject gives the correct report for three consecutive exposures, the first of which is scored C-phase. In the absence of a correct report, the test series proceeds up to the 20th and final exposure (no C-phase). The DMT pictures (two) have a central placed figure, Hero, an instrument and a peripheral, threatening person, biperson. In DMT there are ten signs of defense: repression, isolation, denial, reaction formation, identification with the aggressor, turning against the self, introjection, introjection, projection, and regression. The test is constructed to activate defenses and is based on psychoanalytic defence theory.
PORT: Like DMT, PORT (Perceptgenetic Object Relation Test) (Nilsson, 1995; Andersson & Nilsson, 1999) uses tachistoscopic exposures and has its basis in psychoanalytical defense theory, but PORT is constructed out of three different themes, making it possible to uncover preoedipal problems and a closer examination of primitive defenses. In PORT visual presentations of pictures with human interactions are assumed to be emotionally charged, and it registers the perceptual distortions that the subjects make of the presented images. Since the subjects distorted configurations are uniquely expressed, it is reasonable to associate them with various aspects of deficit/conflict, anxiety/depressive affect, and warding-off operations against anxiety/depressive affect. Influenced by Bowlby and modern infant research, the PORT theme alluding to the first object-relation phase is called the attachment theme. The picture portrays a young woman sitting on a chair in a room. Her arm supports the back of an infant sitting on her knee. The following scoring dimensions are employed in this theme: anxiety, whole configuration, sexualization, identity insecurity, idealization, devaluation, lack of attachment relationships, boundlessness (omnipotence), infantile regression, regressive fragmentation, late or no structuring, no C-phase. The second PORT theme, the separation theme, is termed on the basis of Mahlers description of the second object relation period, Separation-Individuation phase. It shows a young woman in the background on her way out through a door. A child, about one year of age, is in a crawling position with one arm stretched out towards the woman. The following scoring dimensions are used for the separation theme: anxiety, depression, splitting, identity insecurity, transitional phenomena, primary dependency as defence, dependency, boundlessness (omnipotence), motoric activity, motoric inactivity, secretion/excretion, ambitendens, late or no structuring, no C-phase. The third theme is called the Oedipal theme and alludes to the period from three years and onwards. The picture shows a man standing, with his arms stretched towards a 3-4 year-old child. The following scoring dimensions are employed for the oedipal theme: anxiety, phallic problems, hysteric suppression, identity insecurity, transitional phenomena, dependency, aggressive attack, boundlessness (omnipotence), motoric activity, motoric inactivity, secretion/excretion, late or no structuring, no C-phase.
The DMT and PORT tests complement each other and together give a wide illustration of the persons inner psychic condition to deal with conflicts, anxiety, and depressive affects on different levels and with different quality. The methods of DMT and PORT are based on the utilization of special picture themes, unknown by the person at the beginning, which makes it possible to follow the course of progress. A basic thesis is that the course of progress in the test series reflects more general developmental traits, which characterise the individual. Testing with DMT and PORT gives an opportunity to investigate if the intrapsychic structures are changing during the therapy. There is a parallel version to the original version, to be used in studies of treatment with pre- and retest. (The author of the PORT test, professor Alf Nilsson, ITP, University of Lund has evaluated the DMT and PORT reports.)
Checklists - secondary handicap: During the project period a checklist was developed to be used for examining the changes that occurred in the clients during the periodthat is, to see if secondary handicap diminished. Parents, staff members at day centers, and group home staff continuously filled in the checklist during the project period and gave comments about the changes that occurred. The therapists also wrote down the changes they saw in their clients.
A good collaboration has been developed between the Psychiatric Clinic and the Board for Provisions and Services for the Intellectually Handicapped, with special reference to individuals who have an intellectually disability and psychiatric disorders. As an example, when a person with an intellectually disability has been committed to psychiatric care, there is continuous contact between staff members from the two organisations. A checklist has been developed to facilitate the collaboration. Psychiatrists and staff members from the mental health services have been giving supervision to staff working at day centers and group homes. Staff members from the mental retardation service have been invited to in-service training at the psychiatric clinic. Staff members from the psychiatric clinic have been invited to in-service training at the mental retardation service. A better understanding and respect for each other has developed.
A greater knowledge about psychotherapy with people who have an intellectually disability has developed, as well as greater knowledge about psychiatric diagnosis in persons with intellectual disabilities.
The categories that has been scored most frequently at the pretest with PORT are, among others, lack of attachment relationships, defense against dissolution anxiety, anxiety, identity diffusion, dependency, and boundlessness.
At the retest with PORT there were tendencies that showed diminishing of coding of anxiety, devaluation, depression, identity diffusion, lack of attachment relationships, and idealization. Coding of defense against dissolution anxiety had disappeared at the separation and oedipal series, but was coded at the attachment series. The coding of DMT and PORT showed for all clients signs of deep and severe relations and affective problems that can be seen as difficulties in early object relations development. Despite the clients severe problems, there have been great and fast changes that can be seen as increased integration, a better ego-functioning, and decreased use of primitive defenses.
When we compared the results from the PORT test with tests made with other groups, such as borderline patients and patients with schizophrenia, there was an obvious resemblance concerning some categories. In both these groups there were the same signs of identity diffusion and lack of attachment relationships that we also saw in our clients. In the borderline group, as in our clients, there was a strong tendency of whole configuration as defense (that can be seen as a defense against dissolution anxiety).
The results from the WAIS test did not show any changes in the IQ scores, but at least it seems that it has been easier for the clients to understand the instructions, since they have been more concentrated at the retests as compared to the pretests.
For all clients, secondary handicaps have diminished. For some clients there have been great changes after about ½ year of psychotherapy, although many of these changes have been subjective. The changes that the members of the project group saw in the clients after ½ - 1½ year of psychotherapy was that the handicapped smile had diminished or disappeared, the clients did not regress so deeply, they had words for traumatic experiences, and they didnt become psychotic. They have demonstrated improvement of motoric functions, improvement of communication (can pronounce the words right, had longer sentences, more gestures, reduction of stereotyped monologues, took initiative to communicate), they could say I, yes, no, and good bye. Further changes included increased power of initiative and memory, decrease in stereotypic behavior, decrease of self-destructive behavior, decrease of manic behavior, and increased sadness about the handicap.
Other changes in the clients reported by staff members and parents were increased power of concentration, more contacts with others, and improvement of communication (had longer sentences, used words they have never done before, increased vocabulary), changes in medication, better understanding of instructions, were sleeping better, had stopped vomiting, took more initiative, adequate miming, the voices had disappeared, could say I, yes, no, will not, can not, increased idea of time, decreased self-destructive behavior, decreased aggressive behaviour, and ability to be alone.
There has been some confusion about diagnosis of psychiatric disorders in persons who have an intellectually disability. The secondary handicap that has a great impact on the person, is not seen as a psychiatric disorder. It seems that when the secondary handicap is diminishing it is easier to see the psychiatric disorder.
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For further information, please contact:
Barbro Carlsson, Clinical psychologist
Omsorg och habilitering, Box 5129
220 05 Lund, Sweden