UN BUS POUR L'AUTISME

Final report

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I. Method

Team

Clinical Psychologist : Leslie Marneau (France)

Paediatrician : Dr. Cécile Freihuber (France)

Assistant psychologists: Robin Sullivan (Switzerland), Dr. Wilson Howe (USA, California)

Nursing Auxiliary: Lenka Mullerova (Czech Republic)

All of the staff are highly qualified healthcare professionals with extensive experience necessary for the given tasks.

 

Clinical assessment used

ADI-R Short Version:

The Autism Diagnosis Interview, Revisited Version is an interview specifically for parents who suspect that their child might have autism. The interview lasts about 2 hours, and is intended to look for the specific symptoms of autism. In some cases, the clinical exam alone is sufficient to rule out any signs of autism, and the ADI-R is not necessary. During these 5 weeks of consultations, Dr. Freihuber considered it necessary for 15 families. The Interview can be positive in cases of severe mental retardation, and the thorough clinical assessment, based on standardised tools and clinical experience allows a differential diagnosis to be made. However, both mental retardation and autism are often related.

 

 

ADOS:

The Autism Diagnosis Observation Schedule is a standardised clinical assessment made by a clinical psychologist. The toys used during the consultation were selected to show evidence of the specific difficulties of autism. Ms Marneau deemed it necessary for 19 of the children. The assessment has to be linked with a cognitive evaluation. The consultations were recorded on video for further investigation and archives, with the authorisation of the family. For this task, the clinical psychologist was assisted by a psychologist.

The box of materials for ADOS was made by the clinical psychologist with local toys.

 

 

BECS:

The “Batterie d'Evaluation Cognitive et Socio-Emotionelle” (Cognitive and Socioemotional Assessment Battery) is a standardized tool based on the developmental Brunet-Lezine test, and is adapted to individuals/patients/children with a low developmental age. The items allow for observation of the child’s abilities in different areas of development, according to the classical developmental scale. The items concern very early development, and seem pertinent for the Lao population, as the cultural bias doesn't appear trough the select items. The BECS has been used for 20 of the children.

The toys were chosen based on local availability. They can differ from the original toys in the form, but not in the purchased effect.

ECAR:

The “Echelle des Comportement Autistiques Révisée” (Revised Autistic Behaviour Scale) is a monitoring tool to evaluate the frequency of specific behaviour. It was used for group observations by Ms. Mullerova, nursing auxiliary. Group behaviour is an important clue for an autism diagnosis. This assessment was made for 20 of the 22 children.

An unofficial English version was used, translated by the medical team.

 

DENVER’s Scale:

The Denver Developmental Screening Test (DDST), commonly known as the Denver’s Scale, is a test for screening cognitive and behavioural problems in preschool children. It was used for 9 children by the paediatrician, in the case of diagnostic doubts.

 

Organisation of consultations

The children were screened by the VAC before the beginning of the clinic. They were then oriented to our service after a “MCHAT” positive test.

 

The children stayed under observation for 3 days, in a group of 4, under the surveillance of Ms. Mullerova, responsible for family-professional coordination and group monitoring.

The family sees the paediatrician; the interview lasts about 2 hours, and is translated by a Lao-English speaker. The interview is recorded for further investigation and archives, with the authorization of the parents.

A clinical exam is made by the paediatrician (cardiac auscultation, abdominal examination, skin examination, head circumference, neurological examination). After the examination, no clues had been found for a curable disease. No specific etiology had been found, except an eventual Rett Syndrome. The genetic consultation and the MRI weren’t recommended, as they don't yield a specific etiology, and are difficult to obtain in Laos.

In case of doubts about hearing problems, we address the children at the hospital for the testing.

 

The clinical assessments are made by the clinical psychologist during the 3 days of monitoring. The assessments are recorded.

All records are held strictly under medical confidentiality.

The administrative tasks, data collection, and report typing are made by the assistant psychologist.

Two meetings of two hours each with all the medical staff are organized for each group of children in order to conclude the diagnosis.

 

A second parental interview in the presence of the psychologist and pediatrician is done to inform the family of the final diagnosis and to supply information and medical advice (cf. “Treatment and orientation”). A second interview with the VAC's staff can be recommended to discuss further treatment at the VAC.

A medical report is transmitted to the family via the VAC's general secretary. The report is written in English to the attention of doctors for future investigation. The conclusion and follow-up care are translated to Lao by the translator.

The parents have the possibility of contacting our NGO for further questions; our email is included in the final report. They can also receive support at the VAC, via the parental support group.

 

II. Patients

We saw 23 children, 20 boys and 3 girls. The average age was 5 years and 2 months. 18 of them were non-verbal (not possessing functional language), which was the principal complaint of the families for 14 children. The average age of first worries was 26 months.

 

Detected troubles

Autism and ASD: 9

Associated Co-morbidity: 4 Mental Retardation, 1 depression, 1 language Delay

 

Mental Retardation: 6

Associated Co-morbidity: 2 autism, 2 obesity, 1 attention-deficit

 

Language disorder: 1

 

Developmental Delay: 2

Associated Co-morbidity: 1 Psychological issues

 

Language Delay: 2

 

None: 2 (including a deaf patient )

 

Concerning the conclusion of developmental delay and language delay, they were retained for young patients, when the symptoms weren’t judged relevant enough for a specific pathology. They will be seen a second time at the next “diagnostic clinic” project to follow their development.

 

Necessary treatment and orientation:

 

Special education: 18

Concerned professionals: Special teachers, with a degree in special education.

 

Speech Therapy: 15

Concerned professionals: Lao-speaking speech therapist.

 

Scholarly Integration: 11

Concerned professionals: Auxiliary teachers for individual support of children with disabilities (primary school and kindergarten).

 

Visual communication: 9

Concerned professionals: Speech therapist, psychologist, special teachers.

 

Sensory Therapy: 7

Concerned professionals: physiotherapist, occupational therapist, psychologist, special teachers.

 

Psychotherapy: 3

Concerned professionals: Lao-speaking child clinical psychologist.

 

Makaton or sign language: 4

Concerned professionals: Sign language trainer and speech therapist.

 

Current difficulties:

There are currently no Lao-speaking child clinical psychologists in Laos.

There are currently no Lao-speaking speech therapists in Laos.

There is a shortage of qualified special-education teachers in Laos.

 

 

III. Conclusions

To a certain extent, all of the children we have seen can improve their abilities and their future roles in Lao society with the help of adapted education.

A certain confusion exists between autism and mental retardation, which are two categories of developmental delay. Most of the children are non-verbal. According to the views of the parents, we concluded that lack of speech is considered a pathognomonic symptom of autism. The awareness program must take this into consideration and work on the first symptoms of communication issues, which are observable before the age of speech.

We recommend informing the families about mental retardation at the same time as other developmental delays. Mental retardation has consequences on children’s health (e.g. associated obesity), and requires special education.

The Vientiane Autism Center cannot provide a place for all of the children. In addition, some of the families come from remote areas and outer provinces and would need a center close to their home. For these reasons, a Special Education Training Center would be necessary in Vientiane, to provide enough special-education teachers in the provinces. A center for children with disabilities is necessary in each province.

To fulfill the needs of those children, the teachers should receive training to use visual tools adapted to autism and mental retardation, such as Makaton, PECS, and general visual communication.

To make the assessment of needs possible and respond to the demand of qualified psychotherapists, the University of Medical Sciences should offer a degree in psychology.

The paediatricians should receive complementary training for the detection of developmental delays. This training should be included in the university degree.

According to our conclusions of the treatment of children with developmental delays at the VAC, we recommend the following:

Focus on visual communication: Special training and materials are highly necessary.

Classrooms need to be organized according to autism-specific issues, such as sensory sensitivity, and quick informational surrounding. The TEACCH model must be used as a reference for organization of the classroom.

Focus on sensory impairments: Improve the “sensory room”, with special material and training. Weighted belts are highly recommended. A sensory assessment for each child should be done by a qualified professional before the start of the sensory therapy.

 

Training about developmental delays should be done for the teachers before the use of the screening tools. Indeed, the “M-CHAT” test provides a lot of fake-positives for mental retardation, as evidenced by diagnostic statistics (ee “Detected troubles”).

 

A center for adults with vocational training will be necessary, as the children continue to mature.

 

The acceptance by the family and society is also one of our goals, as it influences the quality of life of people with disabilities. We noticed during the consultation that this lack of acceptance was a frequent complaint of the families. The VAC has plans to implement a disabilities awareness program in the country.

 

However, we would like to point out that some complementary exams would have been necessary in some cases (genetic, MRI, language assessment, psychological evaluation by a Lao-speaking child psychologist).

Concerning translations, additional translation time would be necessary for the continuation of this project, as we would like to give more written information to the families. This additional translation time should be added following the diagnostic clinic.

 

We take into consideration the need for speech therapists for the language assessment, which could also increase the cost of the project as well as associated translation costs.

We take into consideration the necessity to have psychometric tools in the Lao language. As they don’t currently exist, we take into consideration the necessity of translation and would like to collaborate with Handicap International on their early detection program.

We would like to improve the quality of accommodation, providing our volunteers with lodging as well as compensation. A minimum of 4 people is necessary for this project, in order to not charge the staff of our host with the supplementary children. We are also in need of supplementary materials (computers, cameras, and video recorders).

The planning will be adapted for a 4 week project. The first week will be dedicated to the re-assessment of some children, especially the youngest, for a total of 7 cases. Three weeks will be dedicated to new diagnoses, with 5 children per week, from Monday to Friday.

The assessments that we used were adapted. We will use the same ones. However, we will use new versions of those tools if they are available.

We would like to increase our ties with local partners such as hospitals.

For the sake of consistency of our projects, we will participate in training programs implemented by the VAC in order to train local staff on the detection of developmental delay.