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Dr. Cornelia Munteanu Senior Social Work Practitioner, HSE CHO 7 Disability Services

All Ireland Social Work Research Conference Irish Association of Social Workers, 14 th June 2019 F acing the diagnosis of autism spectrum disorder (ASD) in Ireland and Romania: A family approach. PhD Queens University Belfast School of Education. Dr. Cornelia Munteanu

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Dr. Cornelia Munteanu Senior Social Work Practitioner, HSE CHO 7 Disability Services

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  1. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019Facing the diagnosis of autism spectrum disorder (ASD) in Ireland and Romania: A family approach.PhDQueens University BelfastSchool of Education Dr. Cornelia Munteanu Senior Social Work Practitioner, HSE CHO 7 Disability Services Oak Unit, Cherry Orchard Hospital, Ballyfermot, Dublin 10

  2. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 PhD thesis - ‘Facing the diagnosis of Autism Spectrum Disorder (ASD) in Ireland and Romania. A family approach’ https://www.researchgate.net/profile/Cornelia_Munteanu Dr. Cornelia Munteanu Senior Social Work Practitioner, HSE CHO 7 Disability Services Oak Unit, Cherry Orchard Hospital, Ballyfermot, Dublin 10 Email: cornelia.munteanu@hse.ie Telephone: 01-0766955015

  3. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 This comparative research study is unique as no previous studies have focused on the impact of ASD diagnostic on family systems across two cultures in Europe. (cross-cultural fixed comparative method research design)

  4. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 Autism Spectrum Disorder (ASD) in Europe and around the world For example, of the 27 EU (European Union) member states in Europe, each country reports different ASD prevalence, legislation, services available, and research capacity. There is a promising body of literature on ASD and culture and “the question of whether ASD presents differently in different cultures has never been more pressing or more amenable to empirical investigation” (Mandy et al., 2014, p. 46) Similar to all families, families with children who have autism vary considerably in terms of structural and functional aspects as well as cultural characteristics. In terms of research on families with children with autism, approaches differ considerably from country to country.

  5. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 The results showed that families of a child with ASD in Ireland had different experiences during the diagnostic process of their child, compared to the Romanian families. Differences were also found between the two groups with regard to the role of mother and father in raising a child with ASD, parents’ worries when received the diagnosis, parents’ awareness/knowledge about ASD, and parents’ level of involvement. A semi-structured interview was used to analyze similarities and differences between the two groups. The duration of the diagnostic process was significantly different between the two countries.

  6. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 Aspects of family functioning were tested using the Family Adaptability and Cohesion Evaluation Scale IV (FACES IV) (Olson et al., 2010). The results showed similarities and differences between the two groups in terms of mean scores for family cohesion, flexibility, communication and satisfaction.

  7. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 In order to understand the two cultural contexts and the comparative nature of this study, Chapter 4 and Chapter 5 describe Irish and Romanian families from different perspectives: historical, demographic and family aspects, political/legislative, assessment/diagnosis and service provision.

  8. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 According with Mansell and Morris (2004) the process of diagnosis involves at least four stages during which families experience a range of emotions: pre-diagnosis, diagnosis, post-diagnosis, and a final stage of acceptance and adaptation.

  9. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 Hypotheses - 6 • Aspects of family functioning (cohesion, flexibility, communication and satisfaction) in Irish families are different than aspects of family functioning in Romanian families • Main family worries regarding their child when received diagnosis in Ireland are different than family worries regarding their child when received diagnosis in Romania. • Irish families show level of involvement in their child’s development differently than Romanian families.

  10. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 • Irish families have a different perspective regarding the role of the mother/father in raising a child with ASD than Romanian families • The experience of a family regarding their child when received diagnosis in Ireland is different than the experience of a family regarding their child when received diagnosis in Romania. • The age of children when diagnosed with ASD and duration of diagnosis in Ireland is different than the age of children when diagnosed with ASD and duration of diagnosis in Romania.

  11. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 As the literature suggest, parents’ decision and understanding of autism is influenced by culture (Mandell and Novak, 2005). Present findings might be linked with parents’ cultural influences regarding the diagnostic process of their child. Cultural differences can be interpreted as having an influence on parents’ perception and experience during the diagnostic process of their child. Specific cultural influences may have an effect on parents’ perception/experience of their child’s diagnosis.

  12. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 For example, one interpretation regarding parents’ worries when received the diagnosis, parents’ awareness/knowledge about ASD, and parents’ level of involvement, can be linked with the legislative and socioeconomic situation in each country. In Romania, the low level of family income and the corrupted medical, educational and governmental systems, the lack of implementation of legislation, encouraged parents to become more involved in their child’s development. In contrast, clear legislation in Ireland regarding children with disabilities, financial support for children with disabilities and their parents can be linked with a low level of parental involvement.

  13. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 Another interpretation of family experience can be associated with the political legacy in each country. During the communism era, Romanian people were deprived of information, services, food and free speech. Ireland did not experience such disadvantages. Romanian families needed to do everything for their child. They did not receive support from other people and institutions and this led them to become more involved in their child’s development.

  14. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 It must be specified that an unpredicted aspect interfered with data collection and this may bias the actual representation of family’s experience during the diagnostic process of their child in Ireland. A significant number of Irish families refused to participate in this research, or accepted initially and then rejected afterwards. Only 24 families out of 77 families contacted choose to participate in this study. Fifty-three families declined the invitation to participate. In contrast, all 30 Romanian families who were contacted to participate in this research accepted the invitation; there were no Romanian refusals to participate.

  15. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 It is difficult to delineate exactly why this may have been the case. These aspects could be correlated to differences found between the experience of the Irish group and the Romanian group in terms of the duration of diagnosis process and access to services and subsequently their level of involvement, worries and ASD awareness/information. In Ireland, the enormous amount of time it took to reach a diagnosis and the lack of services for children with ASD may possibly have influenced parents’ decision not to participate. In the Irish group, the parents were more focused on child’s future and services available (external factors), while in the Romanian group, parents were more focus on what they could do for their child(internal factors).

  16. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 Another interpretation of the refusal of Irish parents to participate in the study could be related to what Amanda Ferguson reported in The Belfast Telegraph. She reported a GP as saying that: ‘the abuse of Northern Ireland’s healthcare system by patients from the Republic has the potential to damage services here ... The number of medical cards registered in Northern Ireland is up to 80,000 higher than the number of people who live here – currently around 1.8m’ Possibly, parents refused to participate because they are already attending services for their child, but in a different healthcare system?

  17. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 In terms of parental interest, the Romanian group (100%) asked question about ASD and the present research, and other therapies, while in the Irish group, parents did not show this level of interest – only 8.3% asked questions about ASD. The parents’ level of information about therapies for children with ASD was significantly different, especially with regard to knowledge about type of therapies and services available for children with ASD.

  18. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 The experience of these families underline the findings of this study in terms of Irish and Romanian family’s levels of satisfaction about access to services. In the Irish group, 100% of families had a negative experience in accessing health services for their child. In the Romanian group, 90% had a positive experience in accessing heath services and only 6.6% had a negative experience. In the Irish group, 91.6% had a negative experience in accessing educational services and only 8.3% had a positive experience. In the Romanian group, 86.6% had a positive experience in accessing educational services in Romania and 10% had a negative experience in accessing educational services.

  19. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 The average duration of the diagnostic process in the Romanian group was 4.63 months and the average duration of diagnostic process in Irish group was 14.92 months. In the Romanian group, the process of diagnosis was 10 months quicker than in the Irish group.

  20. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 Present findings should be considered by policymakers with regard to improving parent’s accessibility to ASD services for their children (diagnostic and post-diagnostic) in both countries. There is a crucial need to develop specialised services for children with ASD.

  21. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 • 1. Family functioning in families of children with ASD The scores for balanced cohesion, balanced flexibility and unbalanced scores did not show significant differences between the two groups. Only, the family satisfaction score was lower in the Romanian group when compared with the Irish group. The families in the Irish group were on average more satisfied with their family life than the families in the Romanian group. The families in the Irish group had on average a more balanced family system in terms of both cohesion and flexibility than the families in the Romanian group.

  22. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 • 2. Family worries when they received the diagnosis of ASD In conclusion, the main family worries about their child when receiving the diagnosis in Ireland were different than the family worries about their child when receiving a diagnosis in Romania with a focus on internal or external factors. Only a few parents (0–10%) were concerned about their relationship with their sibling (child focus), if he/she will be ok (child focus) and what they can do for their child 0–10% (internal factor) Also, more than a half of the interviewed Romanian families (50–60%) were worried about what they could personally do to improve their child’s condition (internal factors).

  23. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 • 3. Level of involvement In the Irish group, the highlevel of stress experienced daily by parents conducted to a low level of involvement in continuing therapies with their child at home. In the Romanian group, low levels of daily stress resulted in more involvement in children’s therapies at home by parents. Parents’ knowledge about children with autism from their own country and from the other country was different.

  24. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 • “I know about Romanian gypsies ... they stay on O’Connell Street. Probably services are worse than here. Romania is a poor country. I think Romania has no services for children with autism. I now about Ceausescu and communism ... I saw a TV programme about orphanages from Romania. Romania is an isolated country.” • “better services in Ireland”.

  25. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 The last question in the interview underlined parents’ interest in research and ASD. The level of involvement included parents’ answers to the last question of the semi-structured interview: Do you have any questions? All participants in the Romanian group (100%) asked questions about this study, ASD, ABA, research in ASD and other therapies. Only 8.3% in the Irish group asked questions about ASD and research in ASD. The results indicate parents’ level of involvement in their child’s development and showed the low level of interest in research in ASD in general.

  26. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 • 4. The role of the mother and the role of the father In the Romanian group, the role of father and the role of mother was perceived as being similar (60–70%), while in the Irish group, the role of mother is predominantly “to do everything” (30–40%) and “to stay at home with children”, “provide emotional support” and “the same” (20–30%).

  27. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 • 5. Experience of diagnostic process The mean score for the Irish group indicated a completely negative experience overall. The mean score for the Romanian group showed a more neutral experience, rather than a negative one. Overall, the Romanian families had a better diagnostic experience when compared to Irish families. A positive or negative experience within the diagnostic process of ASD has a significant impact on a parent’s reaction to the diagnosis (Watchtel and Carter, 2008; Mansell and Morris, 2004; Nissenbaum et al., 2002; Howlin and Moore, 1997; Leff and Walizer, 1992).

  28. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 Significant changes were observed in both groups regarding changes in all aspects of family life (58.3% in the Irish group and 36.6% in the Romanian group), separation(16.6% in the Irish group and 3.3% in the Romanian group)

  29. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 In relation to family’s feelings about child’s diagnosis (e.g. shock, denial, anger, blame, sadness, worries about future and services), in the Romanian group, families experienced more denial 73.3% in comparison to the Irish group (29.1%). Shock was experienced by 50% in the Irish group and 36.6% in the Romanian group. Other feelings included anger (25% in the Irish group and 13.3% in the Romanian group), sadness (66.6% in the Irish group and 33.3% in the Romanian group) and blame (16.6% in the Irish group and 10% in the Romanian group). Parents also included worries about the future and services when they received the diagnosis (12.5% in the Irish group and 20% in the Romanian group).

  30. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 In the Irish group, 100% of families had a negative experience in accessing services for their child: “Services are horrible here. No services. I do not want to think about it. It’s a joke what is going on.” In the Romanian group, 90% had a positive experience in accessing services and only 6.6% had a negative experience. In terms of accessing educational services, the majority (91.6%) of the Irish group had a negative experience and the majority (86.6%) of the Romanian group had a positive experience. In the Irish group, 83.3% wanted the diagnostic process to be quicker. In the Romanian group, the majority mentioned that there was no need for improvement.

  31. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 • 6. Age of diagnostic/duration of diagnostic process In the present study, the average duration of diagnosis in the Romanian group was 4.63 months and the average duration of diagnostic in Ireland was 14.92 months. Comparing the average age of diagnosis in the Irish and Romanian groups showed the mean age for the Irish group was 42.75 months, while the mean age for the Romanian group was 36.03, a difference of 6.717. The results of the present study indicate that the duration of the diagnosis process was associated with positive or negative experience. In the Irish group, the average duration of diagnosis was 14.92 months. As a result, parents’ experience was negative in accessing services for their child (assessment, therapies and educational services). In the Romanian group, the average duration of diagnosis was 4.63 months, which indicated a positive experience in accessing services (assessment, therapies, educational services)

  32. All Ireland Social Work Research ConferenceIrish Association of Social Workers, 14th June 2019 Thank you Dr. Cornelia Munteanu Senior Social Work Practitioner, HSE CHO 7 Disability Services Oak Unit, Cherry Orchard Hospital, Ballyfermot, Dublin 10 Email: cornelia.munteanu@hse.ie Telephone: 01-0766955015

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