Autisme et intervention avec les mamans cothérapeutes. De la mise en place à l’évaluation : expérience à Alger en 2005–2010

RésuméCe rapport décrit la participation des mères à la prise en charge d’une centaine d’enfants autistes durant cinq années (2005–2010) par un travail éducatif au domicile, complémentaire des soins à l’hôpital de jour. Le programme global de stimulation des enfants comporte ainsi deux volets : l’un institutionnel, l’autre parental à raison d’une séance quotidienne de 30 à 45 minutes. Pour cela, la maman est initiée préalablement aux principes de base du programme de Schopler et de la thérapie d’échange et de développement appliqués à l’hôpital de jour. Cette formation et l’accompagnement thérapeutique qui en découle sont décrits puis analysés au plan familial de l’expérience subjective et des effets sur le patient. Trois niveaux de collaboration des couples maman/enfant sont observés : fort, moyen ou faible, échec de participation. Cette étude vise à montrer la faisabilité de la méthode et l’utilité de ce soutien psychoéducatif dans les progrès cliniques observés à moyen terme (deux à trois ans) pour une majorité des cas. Puis, ayant relevé les limites ou insuccès constatés à ce stade de notre expérience, nous avançons des propositions pour améliorer ces résultats et leur évaluation.

In Algeria, child psychiatry is an emerging area of medical specialization which is very late in becoming part of the training for professionals and the provision of services. Due to this, the quality of the treatment of serious mental disorders for children and adolescents is insufficient, diverse, and sometimes non-existant. Currently autism is the major reason for consultation and treatment; the diagnosis is often late and comes when the child already has a significant developmental lag and cannot be enrolled in school — often the reason for the referral. The existing resources in our area are as follows: three units with part-time hospitalization in the capital and its suburbs, 40 child psychiatrists trained during the last two years in collaboration with the WHO, about ten outpatients clinics covering an extended territory with significant socio-demographic and health differences. Only from 18 years of age does the authorities in Algeria recognize autism (in fact as a mental retardation) with a minimal monthly family allowance to parents often at a loss or isolated when faced with an offer of assistance that is limited or difficult to access.ObjectivesAfter having reviewed our sources for this work with the parents concerning autism, we then describe its organization, sequence of events, the difficulties encountered, and discuss propositions for further improvements.Population and methodIn this context, the choice and application of a therapeutic method for autistic children needs to take into account the many constraints in terms of infrastructure and human resources. Due to its simplicity and effectiveness, we have, for both theoretical and practical purposes, for the past decade, considered that it was a good strategy to associate the exchange and development therapy with the Schopler's TEACCH program for those children receiving treatment in our daytime hospital service. It also met the professional qualification of our collaborators — most of them psychologists, speech therapists and care assistants. Another reason is that it is indispensable that the mothers of autistic children are involved in the treatment in order to obtain significant gains (Bartoov et al., 2002 [15] and Bartoov et al., 2001 [16]).ResultsThis therapeutic application was implemented during 2005-2010 for a hundred autistic children and their mothers: 80 of them in daytime medical institution and 20 as outpatients with the same technical support. The mothers as “co-therapists” received a two-hour per month training (from September to June) during three years according to the rules and principles of the teaching activities for autistic children and “the educational strategies of autism” for parental practice, both coming from the TEACCH program (Li et al., 2006 [19] and Velez de la Calle et al., 2008 [20]).ConclusionThis involvement, while less than desirable, is proportional to our resources and nevertheless sufficiently promising and structuring to engage care dynamics and show beneficial effects in cognitive, affective and behavioral fields of the autistic child. After having reviewed our sources for this work with the parents concerning autism, we then describe its organization, sequence of events, the difficulties encountered, and discuss propositions for further improvements. We then carefully examine the difficulties encountered, the means we have in order to make some progress, and we discuss how to evaluate the results, in the context of an experiment which is only beginning in this field in a developping nation. Last, but not least, we also took into consideration the “non-cooperative” mothers in order to adapt our therapy to their personal needs and to elaborate different objectives as far as they are concerned.