Bernadette Rogé
University Professor, Unit for Training and Research in Psychology.
Université de Toulouse Le Mirail, 5 Allées Antonio Machado, 31058 Toulouse Cedex
Psychologist, Unit for Diagnosis
and Assessment of Autism, Hôpital La Grave, Place Lange,
31052 Toulouse Cedex
The Unit for Diagnosis and
Assessment of Developmental Disorders is attached to the University
Department of Psychiatry and Medical Psychology at Toulouse University
Hospital. It exists as an independent unit since 1992 and now
has its own premises. Experience has shown that the type of work
we do requires a specific facility which corresponds to the needs
of the children and their families on a medical, educational,
psychological and social level.
Such a unit should be able
to provide patients with an exhaustive medical approach, making
use of all the skills which the teaching hospital can offer and
all the possibilities made available by its technical facilities.
However, the specific disorders
related to autism must be taken into account and the environment
must be suitably organizad for optimal management and assessment.
Problems in understanding of the language and non-verbal communication
of other persons, the many anomalies in the processing of sensory
information and the particular characteristics of cognitive and
emotional development lead to social maladjustment which is generally
aggravated by novel situations. The environment must therefore
be adapted to the individual, modes of communication have to be
modified in consequence, strategies to get round difficulties
must be developed and the attitude of adults must at all times
be aimed at helping the child to function with greater ease.
The hospital must adapt to
the children, and not the contrary. But the hospital can best
fulfill its role when autistic patients, prepared by this highly
personalized approach, can be assessed by the medical teams under
the best possible conditions.
The work carried out within
this unit is very varied.
1 - Diagnosis
For most of the children
we see, first of all a diagnosis must be established or confirmed.
The children who are referred to us mainly have disorders of
autistic type, but other developmental disorders are taken into
consideration, especially if a differential diagnosis has to be
made. The diagnostic process thus relies on the work of a multidisciplinary
medical team involving psychiatrists, pediatricians and psychologists.
The conventional clinical examination is completed by the use
of specific diagnostic scales.
CARS Child Autism Rating Scale (Schopler)
ADI Autism Diagnostic Interview (Rutter, Lord, La Couteur)
ADOS Autism Diagnostic Observation
Schedule (Lord)
A medical examination is
carried out which includes:
- investigation relating
to pregnancy, delivery, the peri- and postnatal period, family
history and genealogy
- a general physical examination
- laboratory tests
* blood tests, serotonin, platelets, uric acid, Ca, Ph, Mg, lactic
acid, pyruvio acid, fragile X, creatinine, amino acid chromatography
* urine tests: uric acid, Mg, Ca, Ph, creatinine, HVA
* x-rays of head, hands, hips
* evoked oto-acoustic emission
* EEG and MRI, if
justified on medical grounds, are carried out in the Pediatric
Department of Purpan Hospital.
Other tests can be added
to this basic investigation as prescribed by the pediatrician
after examination of the patient and consultation of his or her
existing record.
2 - Assessment of the
child
The level of development
and ability in the various areas of activity is assessed.
The child is placed in the
conditions most likely to encourage participation in the psychological
tests. Each child has an individual assessment room, with which
he or she will become familiar. A designated member of staff,
the same throughout the child's stay, is present during the various
activities. The environment is structured and organized according
to the particular characteristics of each child. The adult adapts
his or her behavior to the child's level of understanding, mode
of communication and individual way of functioning. Test sessions
are carried out every day and the information gained makes it
possible to propose activities in preparation for the educational
program in collaboration with the parent who is present.
The assessment is carried
out using various techniques :
*the Griffiths test evaluates development in five areas : motor skills, autonomy-sociability, language, eye-hand coordination, performance.
*the Psycho-Educational Profile (PEP-R, Schopler) assesses the child's capacities in seven areas (imitation, perception, eye-hand coordination, gross motor skills, fine motor skills, cognitive performance, verbal performance). A three-level scoring system indicates strong points, deficits, and also reveals emerging skills.
*the Vineland scale, based on an interview with the family, gives information on the levels of skill and adaptation in various areas which are fundamental to day-to-day activities.
* lastly, the child is observed
in situations of spontaneous activity.
3 - Work with the famiiy
During the assessment proper,
the parents observe all test sessions on a video circuit. A psychologist
is present to clarify certain aspects of the disorder, explaining
the child's reactions and showing the parents how to manage difficult
situations. The professionals working with the child also demonstrate
the most suitable teaching strategies, and if the parents so wish,
they can progressively participate in attempting the various procedures
observed. Communication is constant and the parents thus benefit
from an initial training which will later help them to collaborate
effectively with the team which will take charge of their child
and they can better adjust their own behaviour in the family setting.
At these various stages of
assessment, the families receive intensive emotional support.
The psychologist who is with the parents in the observation room
is also there to listen to the family. He or she is a witness
to their reactions and is present during the parents'discovery
of their child in a structured work context. Confrontation is
sometimes difficult and the role of the psychologist is then to
help the parents to accept the limits inherent in the handicap.
The psychologist also shares the moments of positively-charged
emotion when parents discover in their child skills previously
unsuspected, revealed in this specially adapted environment. In
this situation of informal communication, parents tend to express
themselves more freely and to talk about their personal and family
problems. Beyond the immediate psychological support, these exchanges
may lead to a request for more long-lasting help. In general,
they lead the parents to see their child in a new light and give
a new impetus to their efforts.
As the week progresses, through
the work carried on at various levels, mutual confidence is established
and future projects for the child are made in a spirit of mutual
collaboration.
On the final day, after a
technical summing-up with all the staff involved, the family and
the team meet to discuss the results of the assessment. The goals
to be reached with the child are discussed, taking account of
the aims and wishes of the parents.
After this period of assessment,
a report is written and a preliminary individual teaching program
is proposed. All results are communicated to the parents and
to the team who will be taking charge of the child.
The children are seen again
for further assessment after a period of eighteen months to two
years.
4 - Follow-up
To continue the work done in the unit for diagnosis and assessment, individual teaching programs are set up whenever this is possible. If the families live in Toulouse, the child can be placed in an integrated class in a nursery or primary school. He or she will then benefit from an individual approach in the environment of an ordinary school.
Education in school is completed
by any necessary speech therapy or psychomotor therapy and by
psychological assistance according to the needs of each child.
Families receive support from the multidisciplinary team. Meetings
with the psychologist or psychiatrist allow an exchange of information
on the child's development or the difficulties encountered. They
also provide psychological support for the parents who are involved
in the education of their child in collaboration with the unit
and the schools.
Unfortunately, the number
of places is limited, as the two classes can take a maximum of
five children in each class. The team from the unit can help
in directing the child towards another suitable structure.
When the families admitted
to the unit come from another area of the country, contact is
made with the team which usually takes charge of the child. Members
of the care team who so wish can take part in the assessment with
the family. The results are always transmitted and communication
encouraged so that the stay in the unit may be of the greatest
possible benefit to the child and any changes in the situation
can be taken into account.
5 - Activities developed
in collaboration with the associations
Contacts with regional associations
of parents have led to projects carried out in common which multiply
the services available to parents. In this way, a network to
provide help at home and to accompany autistic persons in recreational
activities has been set up with the help of students in training,
who also participate in weekend stays set up to provide respite
for families. Parents themselves have organised training programs
destined to help with coping with day-to-day problems. This however
is based on collaboration between the parents' associations and
the unit for diagnosis and assessment at the Hôpital La
Grave.
6 - Training
The activities which are
developed within the unit are innovatory in character, and therefore
logically lead to training and teaching work. As well as encouraging
parent awareness, the unit has begun to communicate its experience
to other teams.
A European training program
"Autism and other developmental disorders" was initiated
at the University in September 1991. Theoretical teaching is
given by all European specialists in autism. Practical training
sessions take place within the unit, in the integrated school
class, and in other institutions which practise the educational
approach.
Courses for initiation or
further training for professionals can be followed within the
unit. There are many applications, but only a limited number
are accepted so as to maintain the quality of the team's work
and the relationship with the families we receive.
7 - Research
In addition to the work of
diagnosis and assessment, research projects involve various departments
of the university hospital. The increasing number of patients,
together with increasing skill in use of the methods of diagnosis
and assessment, makes it possible to constitute homogeneous, clearly
defined groups, which if the families so wish can be studied by
researchers in the various medical and psychological disciplines.
The parents, within their
association, support this initiative on the understanding that
the various investigations must have a precise objective and must
be coordinated so as to avoid repeated sampling or tests which
are excessively disruptive to the child.
Among the current programs
are a multicenter genetic study directed by Professor Michael
Rutter (London) and a study of audition in collaboration with
Professor Lionel Collet (Lyon). A study of motoricity is currently
being organised in collaboration with the laboratory of Professor
Michel Imbert (Toulouse).
The unit for diagnosis and
assessment of autism of the Toulouse University Hospital is therefore
a supporting structure which contributes its own expertise in
the fields of diagnosis, medical investigations, assessment and
development of programs adapted to the child. The work carried
out in the unit is continued and prolonged in the service structures
which aim to provide a better quality of the for the children
and their families.
The unit is also a place
for training. It generalises the transfer of knowledge and its
application in other structures. The unit provides all the necessary
conditions for multidisciplinary research in collaboration with
other departments of the university hospital and the university
laboratories.
Two video-tapes complete
the information on the unit and illustrate its methods
"L'Unité de Diagnostic
et Evaluation de l'Autisme du Centre Hospitalier Universitaire
de Toulouse"
Produced by Christine Philip, Gérard Gautheron and Marc Imberty. Département Audiovisuel du CNEFEI, 1996. Distributed by CNEFEI : Centres nationaux de l'adaptation et de l'intégration scolaire, 58 - 60 avenue des Landes, F-92150 Suresnes, France
40 minutes, standard PAL
- VHS
"L'Autisme, un Trouble
du Développement : un entretien avec Bernadette Rogé"
Produced by Richard Martin and Pierre H. Tremblay. CECOM, Hôpital Riviére des Prairies, and Département Audiovisuel du Centre Hospitalier de Lorquin, 1995. Distributed by CECOM EUROPE, Centre National Audiovisuel en Santé Mentale, 5 avenue du Général de Gaulle, F-57790 Lorquin
28 minutes, standard PAL-VHS