Experiences of parents during diagnosis and forward planning for children with Autism Spectrum Disorder.

Background For families of children diagnosed with autism spectrum disorder (ASD) getting a diagnosis is a traumatic experience on which future care and education plans for the child depend. In this paper parental experiences of diagnosis and forward planning for children with ASD are reported. Method This paper is part of a large cross-sectional study conducted in Northern Ireland and the Republic of Ireland that assessed the needs and experiences of parents of children diagnosed with ASD. Questionnaires were designed and completed by 95 parents, reporting on 100 children, as well as 67 multi-disciplinary professionals. Results Findings confirm that diagnostic and planning processes are extremely stressful for parents, that statutory diagnosis takes a long time, that care and education plans do not include full parental participation, and that reviews of plans do not consistently include intervention data. Conclusion Policy and practice implications of these findings are important for future revisions of diagnostic tools and manuals.

Living with children diagnosed with Autism Spectrum Disorder: Parental and professional views

The number of children diagnosed with an autistic spectrum disorder (ASD) is rising and is now thought to be as high as 1:100. While the debate about best treatment continues, the effects of having a child diagnosed with ASD on family life remain relatively unexplored. This article, by Karola Dillenburger of Queens University Belfast, Mickey Keenan of the University of Ulster, Alvin Doherty from the Health Service Executive Western Region, Tony Byrne of Parents’ Education as Autism Therapists (PEAT) and Stephen Gallagher of the University of Ulster, sets out to adjust that balance. Drawing upon data from a comprehensive study of parental needs, these authors argue that parental and professional views do not always concur; that families make extraordinary sacrifices; that siblings are affected; and that parents are under tremendous stress. Parents argue that educational and social service supports are not efficient and that they are forced to rely largely on support from within the family or from friends. In particular, some important differences between parental and professional perceptions became apparent in relation to interventions based on Applied Behaviour Analysis (ABA). The authors of this article propose that these differences need to be taken seriously by teachers and other professionals as well as by policy-makers.

Dealing with post-traumatic stress disorder: The psychological sequelae of bloody Sunday and the response of state services

Objective: This article describes the political context of health and social care services in Northern Ireland at a the of intense social conflict. Method: Concepts from post-traumatic stress disorder (PTSD) and other relevant international psychological literature are then used to study the experience of the Bloody Sunday families, victims of a traumatic event that happened in Derry in January 1972. Results: High levels of psychological morbidity within this population are reported, alongside some evidence that families had not received services that may have helped resolve the trauma. Conclusions: The authors noted that new services planned as a result of the current peace process may offer social workers and other professionals new ways to address the unmet needs of people traumatized by the Troubles.

ABA-Based Programs for Children Diagnosed With Autism Spectrum Disorder: Parental and Professional Experiences at School and at Home

Having a child diagnosed with Autism Spectrum Disorder (ASD) poses a range of challenges to families, many of which can be addressed through appropriate intervention. A study of parental (n = 95) and professional (n = 67) experiences was carried out in relation to two settings: (a) schools that provided intensive interventions based on the science of Applied Behavior Analysis (ABA), and (b) non-intensive ABA-based home programs. Results show that parents whose children attend ABA-based schools were generally more satisfied with their child's educational provision, monitoring procedures, and level of staff training, than parents who were not offered ABA-based education in schools. © 2012 Copyright Taylor and Francis Group, LLC.