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Context. The integrated project between professional education and higher education was born to give greater support to disabled students enrolled in schools. This project also developed competencies for working and social integration of the involved peop
- issue: Issue 1 / 2009
- authors: Gianna Berligerio, Mario Chimenti, Carlo Hanau, Daniela Mariani Cerati, Nicola Panocchia
- keywords: autism, family, Italy
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abstract
Background Recently, many articles have dealt with researches on the impact of stress, anxiety and depression of parents of children with pervasive developmental disorders (group F84, ICD10), or DGS, either on the resources parents use to cope with those disorders, or on the effectiveness of their therapeutic intervention on children.
One of the few randomized trials (Rickards et A) on the impact of training and involvement of parents shows the importance of home assistance provided by a specialized pedagogue, two hours a week, for one year. The pedagogue trained parents and siblings and planned with parents a specific educational project for their children. He, from a specialized interdisciplinary centre, visited the family at home to share an educational plan, suggest behavioral and environmental changes and advice on communication strategies in order to improve children's personal autonomy of in their ordinary life. At the end of the experimentation held in Melbourne (May 2000 - December 2003), results showed relevant improvements in average QI (from 60,2 to 64,9). In the control group, the average QI dropped from 60,6 to 57,1. PBCL indexes (test for the measurement of problematic behaviors under the age of 6) decreased from 19,2 to 12, while in the control group the index raised from 17,4 to 17,7. Improvements were stronger for children with families with higher stress levels (plus 18 points in QI).
Experimental group parents showed no differences from control group parents. Probably, involvement in the child condition is a stress factor itself and it is only compensated by the child improvement.
Some authors (Schieve et AA) pointed out how parents of children with DGS experienced higher level of stress and lived their parenthood in a more strongly way than the 3 comparison groups: 1) parents of children with cognitive disorders, different than autism, 2) parents of children with special needs, without behavioral and cognitive disorders, 3) parents of children with no special needs. The article states: "however, it is more likely that parents of children with DGS report feeling more related to their children than parents of healthy children or parents of children with other disorders different than autism".
Two authors (Montes e Halterman) after showing how mothers of autistic children had higher level of stress than general mothers, refer that "mothers of autistic children are no different than mothers of the general population as for the strength of the connection and tempers with their children, or being a parent".
According to the authors, mothers of autistic children have the same or sometimes even higher parental skills than mothers of healthy children coming from the same socio-demographic background. Bayat underlined the great resilience families of autistic children have. Bishop and other authors studied the factors leading to a negative impact of children with autism on their families, such as being a Caucasian mother, having a small social support, having other children with iterative behaviors.
An interesting article by Schwichtenberg e Poehlman showed the effect of a program based on applied behavior analysis (ABA) on families with children with DGS. Some interesting aspects of the study are confounding:
- Mothers of children with ASD report fewer symptoms of depression if their children attend a program based on ABA;
- Mothers, directly involved in the program based on ABA, refer more symptoms of depression and stress, not related to their children disorder; those symptoms of stress are higher in those mothers as compared to mothers of children with cerebral palsy.
One article by Remington and collaborators (Remington et AA) described the impact of behavioral therapy (ABA) on a group of parents of autistic children, as compared to a control group, over a two-year period. No difference was found between the two groups as regards parents'mental wellbeing. However, fathers of ABA group children increased their depression symptoms. This increase was lower than mothers' level of depression, that was more stable.
Hastings revealed how the stress of mothers of autistic children is related not only to the child condition itself, but also to fathers' level of stress, which in turn is influenced by the presence and the psychological conditions of another child.
In conclusion, these studies on psychological wellbeing of families with children with DGS made many prejudices and false beliefs fall down, and put down whatever psycogenetic theory on autism. They underlined the resources of these families and the importance of social support. Family associations play a key role in social support. In these studies families are portrayed as a source of resources and not as dysfunctional families, to be watched over by services.
Starting from these premises, which are available also in Italian literature, the National Association of Parents of children with Autism (Associazione Nazionale Genitori Soggetti Artistici, ANGSA) has been publishing the ANGSA Bullettin since 1988 and has been promoting the strong involvement of parents in the process of child skills development in Italy, as already spread abroad (Schopler e Lovaas). This activity was developed in the last 5 years among various Regions, involving teachers and pedagogues as well.
In particular, the ANGSA section of Puglia activated a training program for parents. The first program was held in Bari, 7-9 October 2005. The meetings consisted of discussions between experts and parents on those themes emerging from the answers to a questionnaire previously sent to parents.
The questionnaire explored training needs parents of children with DGShad and was composed of three parts: 1) questions about the respondent; 2) questions about the child with DEG; 3) questions about the parents' training needs.
Out of 150 questionnaire sent to families (ANGSA Puglia members and other interested), 30 questionnaires were filled in. The sample of 30 families was composed of 8 fathers and 22 mothers, generally well educated, whose children were adolescents or young adults. Parents were very interested in training and in particular in:
- What are and how to cope with problematic behaviors?
- What happens when people with DEG reach adulthood and which rehabilitation is possible?
- Socialization - Coping with feelings, social relations and sexuality of persons with developmental disorders;
- Autonomy - How to teach the basic skills of autonomy.
The diagnosis was autism in 20 cases, Asperger in 2 cases and other diagnosis in 8 cases. Out of 30 questionnaires, 29 respondents were interested in receiving training on 1) information about the disturb, 2) practical suggestions on copying with the disturb, 3) discussion with experts and parents on the disturb. Themes to be treated are problematic behaviors (19 cases), adulthood (18), autonomy (15), socialization (15), communication (11), play (11), school (11), family (10), health information (8), research on autism (7), rights (6), evaluation (4), cure (3), others (3), meaning of autism (1).
Parents answering the questionnaire were invited at the training program. Parent training was an important occasion for parents to make exchanges. These training sessions can become a useful instrument for others.
In conclusion, the positive response of this group of people underlines the crucial role of parent-child relationships as well as the importance of stimulating the resources available within families. Moreover, it seems possible to transfer skills and competencies among parents with similar problems and within the community. Training sessions are good occasions for parents and experts - operating on psycho-educational plan of the children with autism - to meet and make exchanges.
Key references
Antonucci, M. (2005). Il progetto educativo con le persone autistiche e con le loro famiglie: progettazione partecipata o decisore unico? Autismo e Disturbi dello Sviluppo, 3, 2, 171-188.
Benedetto, L. (2005). Il parent training: counseling e formazione per i genitori. Roma: Carocci.
Marcus, L.M., Kunce, L.J. & Schopler, E. (1997, it. 2004). Lavorare con le famiglie, in: Cohen, D.j. & Volkmar, F.R. (a cura di), Autismo e Disturbi Generalizzati dello Sviluppo, vol. 2". Gussago (Brescia): Tannini.
Ricci, C. (1988). Il parent training, ovvero: anche i genitori possono essere formati. Psicologia e Scuola, 8, ottobre-novembre, 16, 36-40.
Robiati, S. (1996). Il parent training: metodologie e tecniche per la formazione dei genitori. Assisi: Cittadella.
Schopler, E. (1995, it 2005). Autismo in famiglia: manuale di sopravvivenza per genitori. Trento: Erickson.
Contacts: Carlo Hanau, professor University of Modena and Reggio Emilia, Via Fogliani 42100 Reggio Emilia - Fax 0623 3206931 e-mail: hanau.carlo@gmail.com