The article comes from a special report on the plurality of approaches to autism published in the journal “Journal des psychologues” n ° 353 from December-January 2018. It is written by Léa Dormoy, early care psychologist “Air Bubble Center” and at the Pediated[1] Unit in the Mignot Hospital, Versailles. This is an article that looks at parents’ experiences with their child’s autism diagnosis and what the psychologist can do to help and support them during this event.
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder which diagnosis disrupts family relationships. It is characterized by difficulties in communication and social interaction on the one hand, and on the other hand by limited and repetitive interests. Consequences for family life are a much greater stress factor than for parents of typically developing children and parents of children with other developmental disorders. Parenting skills can be put to the test. Indeed, the relationship and communication difficulties related to autism cause parent to question himself in his ability to meet his child needs. Moreover, because of his atypical, even confusing, behavior, the child with ASD requires a lot of attention and patience. It is therefore essential to focus on the quality of life of children with ASD parents and to analyze their needs in order to offer them appropriate guidance and support.
The announcement of an ASD diagnosis is a real upheaval for parents and causes a loss of meaning in parenting. The planned projects collapse and everything becomes a source of questioning. However, it is important that this diagnosis is made as early as possible so that the care can be put in place, with all the precautions it imposes.
Whatever the parents’ reactions to the traumatic shock caused by the announcement of the ASD diagnosis, professionals will have to accompany them in their journey on their child development and the possible care in order to allow them to adjust their parental demands and attitudes. They must be aware of the consequences on the parents in order to be able to propose support means adapted to each parental situation.
Then, the psychologist can offer different support types according to the needs expressed by the parents. It can be emotional support that corresponds to a listening time allowing parents to express the emotions felt in relation to the situation. Furthermore, parents often feel excluded from society and tend to fall back on themselves. The professional must be vigilant in respecting their perceptions and concerns and to value them in what they manage to put in place with their child by offering support of esteem. Parents may also feel the need to make sense and understand the situation. Therefore, the professional will be able to offer informative support through information evenings and advice on specific works. Several intervention models have been developed to allow parents to adjust to the functioning of their child. Finally, professionals should be able to offer material and practical support through a network of professionals to advise parents in their search for relay to avoid burnout.
This article is intended for psychologists who will have to take care of children with autism. If the early care of the child is fundamental, the problem of parental support is just as important. The article gives the reasons that justify such support and the forms it can take. Specific models are indicated as “the Denver model for parents P-ESDM” or the “Parent-Mediated Communication-Focused Treatment” (PACT) program with a description of the intended goals and their operational principle. Considering the parents experience facing the autism problem is fairly recent in France and it is interesting to note that professionals are beginning to worry about it. It is indeed essential that the psychologist be aware of the specific consequences of autism on families and support parents as soon as the diagnosis is announced while respecting their choice to be accompanied or not. These consequences are well described in the article and make it possible to have a pretty precise idea of what parents can live.
But how to train for this type of practice? This question is not addressed in the article. This is perhaps an element that may be lacking to the psychologist who seeks to learn about the various aspects of the autism management, particularly on the parenting side and on psychoeducational approaches.
Today, it is commonly accepted that autism is not the result of a deleterious relationship between the mother and her child. This psychodynamic conception of autism has long harmed the relationship between parents and professionals. Parents, and especially the mother has long been considered responsible for the autism of her child implying a very high guilt. Between rejection and suffering, families are devastated. If parents are now more involved in their child care, their parental experience is nonetheless set aside and few professionals are aware. Yet, realizing that parents may need support can be an excellent lever to improve the quality of life for families.
Dormoy, L. (2018). Le soutien aux parents d’enfants avec TSA : quelles propositions pour quels besoins ?, Le journal des psychologues, 353, 42-47.
Words I have learned
To disrupt: perturber, entraver, déstabiliser
An upheaval: un bouleversement, un chambardement
To be aware of: être conscient, avoir conscience de
To advise someone: conseiller, aviser, informer quelqu’un
To harm: nuire
Dorothée LEBOURQUE
[1] This name is built with a mix of pediatric and TED (Troubles Envahissants du Développement) which means Invasive Developmental Disorders