Research Note: Examining Services Available to Greek Parents of Children with Autism Spectrum Disorders (ASD)

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May 25, 2016

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¶ 3 Leave a comment on paragraph 3 0 Research Note

¶ 4 Leave a comment on paragraph 4 1 This research note, a part of a larger project, documents the challenges that Greek parents encounter in their everyday effort to provide for their children with Autism Spectrum Disorders (ASD) along with the ways that can be used to enhance partnerships between these parents and professionals such as children’s psychiatrists, psychologists and speech therapists. Seventy-four parents of children with ASD were asked to complete an open – ended questionnaire. This questionnaire was based on Stein and Jessop’s (2003) Impact on Family Scale and Family Needs Questionnaire and also on Siklos and Kerns’s (2006) Professional Autism Needs Questionnaire (PAN-Q). The data suggests that the needs of most Greek parents of children with ASD arose when they were seeking a diagnosis, intervention or treatment for their children and finding appropriate schooling. Over half of the parents referred to the financial strain of raising children with ASD, along with the ongoing needs for support in coping with the day-to-day challenges, in the recent times of austerity in Greece. From this quantitative study, pedagogical implications as well as areas for ongoing research are suggested.

¶ 5 Leave a comment on paragraph 5 0 1. Theoretical Considerations

¶ 6 Leave a comment on paragraph 6 0 A plethora of research in the field of special educational needs (e.g. Gray, 2003; Hutton & Caron, 2005; Montes & Halterman, 2007; Tomanik, Harris & Hawkins, 2004) has discussed the difficulties faced by parents of children with Autism Spectrum Disorders (ASD)[1]. This disorder will subsequently be referred to by its abbreviated form in this work. Glover-Graf (2011), for instance, postulates that parents of children with ASD are likely to experience strained marital and extended family relationships, social isolation, challenging educational arrangements, and a sense of grief related to the restricted opportunities for their children. In this regard, a diagnosis of ASD affects not only the diagnosed individual, but extends to include the entire family. Given that it is the parents who are often seen as the most influential agents on their children with ASD (Wang, 2008, Singer et al., 2012), some researchers (e.g. Beatson, 2008; Beckman, 2002; Prelock et al., 2003) have accentuated the salience of providing family-centred care by taking into account the ongoing interactions between families, and professionals. In Greece, the context of the current study, ASD was recognized as a special needs category under educational laws numbers 1566 and 2817 which were enacted by the Greek Parliament in 1985 and 2000 respectively. In 2008, a new educational law (number 3699) was introduced specifying that educational placements for children with ASD should be determined according to their cognitive, language and social development (Syriopoulou – Delli, 2010).

¶ 7 Leave a comment on paragraph 7 1 Previous empirical studies have explored the needs of children with ASD (e.g. Gena, 2006; Hitoglou et al., 2010; Kalyva, 2013; Makrygianni & Reed, 2010; Stampoltzis et al. 2012), the difficulties that Greek parents of children with ASD encountered but fell short of seeking to offer practical steps to overcome the identified difficulties or unearthing the relationships between these parents and professionals. Notably, the findings of studies conducted by Kalyva (2013) and Stampoltzis et al. (2012) showed that there was a noticeable lack of services offered to children with ASD in Greece, especially in terms of the quality of education and care. These studies found that the Greek government did not offer sufficient financial support either to parents of children with ASD or to professionals in the form of training and professional development, for instance.

¶ 8 Leave a comment on paragraph 8 0 Increasingly, many families in Greece face serious challenges in supporting their children with ASD, principally in terms of overcoming current financial difficulties due to the economic crisis and handling the lack of appropriate educational provision (Gena et al., 2006). Thus far, only a very limited number of empirical studies (e.g. Gena, 2006; Hitoglou et al. 2010; Makrygianni & Reed, 2010; Stampoltzis et al. 2012; Kalyva 2013) have been conducted in Greece to examine some contextual factors, including parents’ involvement with children’s learning, parent-professional co-operation, types of services offered in special education settings, the lack of public services and generally limited resources and educational provision for children with ASD.

¶ 9 Leave a comment on paragraph 9 1 Some researchers (e.g. Karim et al., 2012; Ridge, 2013) have argued that families and children with disabilities are worst hit when resources become limited. Hartas (2014) pointed out that many Western countries (e.g. the U.K., the U.S. and Canada) are facing difficulties that hinder the provision of quality services to children. These difficulties encompass the general climate of austerity, severe cuts to public spending and the crumbling of the welfare state. This author notes that in such circumstances, families’ social problems become privatized and the onus is on individual parents to overcome structural problems aimed at tackling social inequality and child poverty (Hartas, 2014).

¶ 10 Leave a comment on paragraph 10 0 With the above in mind, the current study has, to a small extent, redressed the balance by disentangling the needs of parents to support their children with ASD and

¶ 11 Leave a comment on paragraph 11 0 to find resources that improve their resilience especially in an era of austerity. In this quantitative inquiry study, the following research question needs to be answered: What are the Greek parents’ views towards these educational and social needs of their children with ASD?

¶ 12 Leave a comment on paragraph 12 0 2. Methodological Design

¶ 13 Leave a comment on paragraph 13 1 A purposive sampling strategy (Patton, 2002) was adopted and the sample comprised seventy-four parents of children with ASD. The fieldwork took place in three special schools for children with ASD: one urban and two suburban of mixed socioeconomic-status (SES) and also three Centers for Differential Diagnosis and Support of Special Educational Needs (K E D D Y)[2] located in different areas of Athens in the Attica region of Greece. All these settings were selected because they had multidisciplinary teams that conducted assessments and supported children with ASD.

¶ 14 Leave a comment on paragraph 14 1 The parents deemed eligible to participate in the study were the biological parents of a child diagnosed with ASD, aged 7 to 17 years and enrolled in the state school system at either primary or secondary level. The two main groups of respondents have been included in the total sample, reflecting the relationship to the child who has an ASD. These comprised 53 mothers (71.6%) and 21 fathers (28.4%). Most of the children with ASD were male. In all this totalled 58 children (78.4%), while 16 children (21.6%) were female. In total, 74 children aged from 8 months to 18.6 years (M=11.23, S.D. =3.39) were included.

¶ 15 Leave a comment on paragraph 15 0 All the parents of children with ASD were asked to complete a questionnaire aimed at acquiring general background information about their experiences regarding ASD. Furthermore, these parents completed the Family Needs Scale which was devised for this study having been adapted from the Impact on Family Scale (Stein & Jessop, 2003), Family Needs Questionnaire (Siklos & Kerns, 2006) and the Professional Autism Needs Questionnaire (PAN-Q) (Keenan et al., 2007) already mentioned previously. This questionnaire was delivered to the participants by hand in order to maximize the return rate. The Family Needs Scale consists of nine items scored as: ‘not important’, ‘slightly important’, ‘important’, or ‘very important’.

¶ 16 Leave a comment on paragraph 16 0 The internal consistencies of this scale were Cronbach’s α =0.61.

¶ 17 Leave a comment on paragraph 17 0 This research complies with the guidelines of the British Educational Research Association (BERA, 2011). In the first place, an official approval was sought from the Special Education Department of Ministry of Education in Greece. The participants were also informed that their involvement was optional and they could withdraw at any time. Prior to the research the participants provided their written consent and they were made aware of the nature of the research and the adopted approach. The participants also were informed that their cultural values would be met with respect and that their responses would be kept both anonymous and confidential.

¶ 18 Leave a comment on paragraph 18 0 3. Results

¶ 19 Leave a comment on paragraph 19 0 3.1 Parents’ Needs  

¶ 20 Leave a comment on paragraph 20 0 With regard to parents’ needs, a descriptive analysis of family needs is presented in Table 1. More than half of the parents rated as ‘very important’ having support with educational decisions (68.9%) child development, (68.9%) financial

¶ 21 Leave a comment on paragraph 21 0 matters (74.3%) and access to public services (K E D D Y)[3] (64.9%). In relation to accessing emotional support from parents of children with ASD and needing reassurance about harbouring negative feelings regarding a child’s challenging behaviours, parents were equally divided into those who rated this as ‘important’ (40.5%) and ‘slightly important’ (40.5%). Around half of parents (48.6%) rated counselling as ‘important’ for them and their spouse. Roughly one third of parents (41.1%) rated the development of a social network as ‘important’ and ‘very important’.

¶ 22 Leave a comment on paragraph 22 0 Table 1

¶ 23 Leave a comment on paragraph 23 0 Frequencies of parents’ rating of support

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¶ 38 Leave a comment on paragraph 38 0 4. Discussion and Implications

¶ 39 Leave a comment on paragraph 39 0 Although a work in progress, the purpose of this study is to examine basic   parental needs and also the difficulties experienced in supporting children with ASD. The presence of a child with ASD creates challenges to family life but it also impacts specific inter-familial relationships. In general, parents have basic requirements in terms of financial support, with educational decisions, concerning the autonomy of their child and they seek assistance from public Centers for Differential Diagnosis and Support of Special Educational Needs (K E D D Y)[4]. It is essential therefore to support a reorganization of parents’ lives which would result in necessary adaptations and also ensure that the needs of their entire family are met (Van Riper, 2007 p. 124).

¶ 40 Leave a comment on paragraph 40 0 An interesting finding which must be paid attention to concerns is the difficulties that parents experienced in finding an appropriate educational setting for their children with ASD. This trend may be the result of the implementation of Law 3699 which gives Greek parents the right to choose between special or mainstream education for the child. Some recent studies (e.g. Makrygianni & Reed, 2010; Papageorgiou & Kalyva, 2010; Syriopoulou Delli et al., 2012) showed that the Greek educational system seems to have a difficulty including pupils with ASD in mainstream schools, because of the demanding curriculum content and the lack of appropriate teaching accommodations and trained personnel in both primary and secondary education. Greek parents were found to have experienced unhelpful bureaucracy and a general lack of taking responsibility which could be said to characterise the attitude of the Greek education system (Zoniou -Sideri, 2011).

¶ 41 Leave a comment on paragraph 41 0 This study revealed parents’ voices for better services towards their children with ASD’s educational and social needs. They struggle to obtain quality in education and services, being faced with the absence of necessary technical infrastructure,

¶ 42 Leave a comment on paragraph 42 0 understaffing in schools, lack of funding, covert or overt practices of acceptance and/or rejection of people with disabilities in the educational system (Loukisas & Papoudi, 2016).

¶ 43 Leave a comment on paragraph 43 0 A remarkable result emerging from this study is the financial strain of raising their children with ASD experienced by Greek parents. This may be a result of the Greek National Insurance Service which covers only a small part of the expenses. Parents’ need for financial support has also been reported in a number of other studies (e.g. Makrygianni & Reed, 2010; Miller et al., 2013; Syriopoulou – Delli et al., 2012). There is good evidence that the financial burden of care for a child with ASD is very substantial, although precise estimates that incorporate all associated costs are not yet available.

¶ 44 Leave a comment on paragraph 44 0 There is clearly urgent need for this especially during a period of austerity when already overstretched welfare services are being further curtailed. This is consistent with Ridge’s (2013) study which showed that cuts in social security benefits had a severe financial impact on most families, in particular, those with children with special educational needs (SEN)[5], who have been losing out in relation to having their educational, social and physical needs met.

¶ 45 Leave a comment on paragraph 45 1 Overall, this study provides valuable information regarding the challenges of parents with children with ASD. It may assist parents and professionals to establish effective channels of communication to support the educational and social needs of children with ASD. Ultimately then, there is a great need for a comprehensive state-maintained support system in Greece catering for parents’ needs and expectations for their children with ASD. This system could consist of a variety of professionals (i.e. teachers, services providers, educators, financial advisors) that could meet the individual needs of families struggling to help their children with ASD. More empirical studies are needed to clarify the salience of partnership and communication between professionals and parents. This can serve as a benchmark to improve the services offered to children with ASD.

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¶ 47 Leave a comment on paragraph 47 0  References

¶ 48 Leave a comment on paragraph 48 0 Beatson, J. (2008). Walk a mile in their shoes: Implementing family-centered care in serving children and families affected by Autism Spectrum Disorder. Topics in Language Disorders, 28(4), 309-322.

¶ 49 Leave a comment on paragraph 49 0 Beckman, P. (2002). Providing family-centered services. In M. Batshaw (Eds).A medical   primer (pp. 683-691). Baltimore: Paul H. Brookes Publishing Company.

¶ 50 Leave a comment on paragraph 50 0 British Educational Research Association (2011). Ethical Guidelines for Educational Research, London: BERA.

¶ 51 Leave a comment on paragraph 51 0 Department for Education (DfE) (1981).Education Act. London: DfE

¶ 52 Leave a comment on paragraph 52 0 Department for Education and Skills (DfES) (2014). Special Educational needs Code of practice (pp. 4-12). London: DfES

¶ 53 Leave a comment on paragraph 53 0 Gena, A., Kalogeropoulou, E., Mauropoulou, A., Nikolaou, A., Notas, S. & Papageorgiou, B. (2006). Autism Spectrum. Trikala: Ella Publications.

¶ 54 Leave a comment on paragraph 54 0 Gena, A. (2006). Family and Child with Autism: Parental Reactions and Adjustment. In: A. Gena, E. Kalogeropoulou, S. Mauropoulou, A.Nikolaou, S. Notas & V. Papageorgiou (Eds). The Autism Spectrum: Cooperation between family and professionals (pp. 45-88).  Trikala: The Association of Parents and Friends of Children with Autism.

¶ 55 Leave a comment on paragraph 55 0 Glover – Graf, N. (2011). Family adaptation   across cultures towards a loved one who is disabled. In: I. Marini, N. Glover-Graf & M. Millington (Eds). Psychosocial aspects of disability: Insider perspectives and counseling strategies (pp. 169-194). New York: Springer Publishing Company.

¶ 56 Leave a comment on paragraph 56 0 Gonela, H. (2008). Autism: Enigma and Reality. Athens: Odysseas.

¶ 57 Leave a comment on paragraph 57 0 Gray, D. (2003). Gender and Coping: the parents of children with high functioning autism. Social Science & Medicine, 56 (3), 631 – 642.

¶ 58 Leave a comment on paragraph 58 0 Hartas, D. (2014). Parenting, family policy, and children’s well -being in an unequal society. Hampshire: Palgrave Macmillan.

¶ 59 Leave a comment on paragraph 59 0 Hitoglou, M., Ververi, A., Antoniadis, A. & Zafeiriou, D. I. (2010). Childhood autism and auditory system abnormalities. Pediatric Neurology, 42, 309–314.

¶ 60 Leave a comment on paragraph 60 0 Hutton, A. & Caron, S. (2005). Experiences of families with children with autism in rural New England. Focus on Autism and Other Developmental Disabilities, 20(3), 180-189.

¶ 61 Leave a comment on paragraph 61 0 Kalyva E. (2013). Collaboration between parents of children with autism spectrum disorders and mental health professionals. Recent Advances in Autism Spectrum Disorders, 1(23), 521-555.

¶ 62 Leave a comment on paragraph 62 0 Kalyva E. (2011). Autism: Educational and Therapeutic Approaches. London: Sage.

¶ 63 Leave a comment on paragraph 63 0 Karim, K., Cook, L. & O’Reilly, M. (2012). Diagnosing autistic spectrum disorder in the age of austerity. Child: care, health and development, 40 (1), 115-123.

¶ 64 Leave a comment on paragraph 64 0 Keenan, M., Dillenburger, K., Doherty, A., Byrne, J. & Gallagher, S. (2007). Meeting the needs of families living with children diagnosed with autism spectrum disorder, (Final Report, pp. 184), University of Ulster: Coleraine, NI.

¶ 65 Leave a comment on paragraph 65 0 Loukisas, Th. & Papoudi, D. (2016). Mothers’ Experiences of children in the autistic spectrum in Greece: Narratives of development, education and disability across their blogs. International Journal of Disability, Development and Education, 63 (1) 64-78.

¶ 66 Leave a comment on paragraph 66 0 Makrygianni, M. & Reed, P. (2010) Factors impacting on the outcomes of Greek intervention programmes for children with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 4(4), 697–708.

¶ 67 Leave a comment on paragraph 67 0 Miller, K., Morfidi, E. & Soulis, S. (2013). Teachers’ perceptions of Greek special education policies and practices. Journal of International Special Needs Education, 16(1), 53-65.

¶ 68 Leave a comment on paragraph 68 0 Ministry of Education & Religious Affairs (MNERA) (2008). Special Education of people with disabilities or special educational needs. Athens: MNERA.

¶ 69 Leave a comment on paragraph 69 0 Montes, G. & Halterman, J. (2007). Psychological functioning and coping among mothers of children with autism: A population – based study. Pediatrics, 119(5), 1040-1046.

¶ 70 Leave a comment on paragraph 70 0 Papageorgiou,V. & Kalyva, E. (2010). Self-reported needs and expectations of parents of children with autism spectrum disorders who participate in support groups. Research in Autism Spectrum Disorders, 4, 653–660.

¶ 71 Leave a comment on paragraph 71 0 Patton, M. (2002). Qualitative research and evaluation methods. London: Sage Publications

¶ 72 Leave a comment on paragraph 72 0 Prelock, P., Beatson, J., Bitner, B., Broder, C. & Ducker, A. (2003). Interdisciplinary assessment of young children with autism spectrum disorder. Language, Speech and Hearing Services in Schools, 34, 194-202.

¶ 73 Leave a comment on paragraph 73 0 Ridge, T. (2013). We are all in this together? The hidden costs of poverty, recession and austerity policies on Britain’s poorest children. Children & Society, 27, 406 – 417.

¶ 74 Leave a comment on paragraph 74 0 Siklos, S., & Kerns, K. A. (2007). Assessing the diagnostic experiences of a small sample of parents of children with autism spectrum disorders. Research in Developmental Disabilities, 28, 9-22.

¶ 75 Leave a comment on paragraph 75 0 Singer, G., Hornby, G., Park, J., Wang, M. & Xu, J. (2012). Parent to parent peer support across the Pacific Rim. Journal of International Special Needs Education, 15(2), 89-106.

¶ 76 Leave a comment on paragraph 76 0 Stampoltzis, A., Papatrecha, V., Polychronopoulou, S. & Mavronas, D. (2012). Developmental, familial and educational characteristics of a sample of children with Autism Spectrum Disorders in Greece. Research in Autism Spectrum Disorders, 6(4), 1297-1303.

¶ 77 Leave a comment on paragraph 77 0 Stein R.E. & Jessop D. (2003).The Impact on Family Scale Revisited: Further Psychometric Data. Journal of Developmental & Behavioral Pediatrics, 21(1), 9-16.

¶ 78 Leave a comment on paragraph 78 0 Syriopoulou – Delli, C. (2010). A historical review of educational policy in Greece for children with pervasive developmental disorders, behavioral difficulties and other special educational needs. Review of European Studies, 2 (1), 1–14.

¶ 79 Leave a comment on paragraph 79 0 Syriopoulou – Delli, C., Cassimos, D., Tripsianis, G. & Polychronopoulou, S. (2012). Teachers’ perceptions regarding the management of children with autism spectrum disorders. Journal Autism Developmental Disorders, 42 (5), 755-768.

¶ 80 Leave a comment on paragraph 80 0 Tomanik, S., Harris, G. & Hawkins, J. (2004).The relationship between behaviours exhibited by children with autism and maternal stress. Journal of Intellectual & Developmental Disability, 29(1), 16-26.

¶ 81 Leave a comment on paragraph 81 0 Van Riper, M. (2007). Families of children with Down syndrome and autism: Responding to ‘A change in plans’ with resilience. Journal of Pediatric Nursing, 22(2), 116-128.

¶ 82 Leave a comment on paragraph 82 0 Wang, P. (2008). Effects of a parent training program on the interactive skills of parents of children with autism in China. Journal of Policy and Practice in Intellectual Disabilities, 5(2), 96-104.

¶ 83 Leave a comment on paragraph 83 0 Zoniou- Sideri, A. (2011). The necessity of inclusion: Current questions and Perspectives.In: A.Zoniou – Sideri (Eds) Current Inclusive perspectives (pp.29-53). Athens: Pedio

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Appendix

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¶ 103 Leave a comment on paragraph 103 0                                             Family  Needs  Scale

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¶ 105 Leave a comment on paragraph 105 0  With regard to my child’s care, I need:

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¶ 110 Leave a comment on paragraph 110 0 [1] Autism Spectrum Disorders (ASD), which include autistic disorder, pervasive developmental disorder and Asperger’s disorder, are a group of neurodevelopmental disorders that are characterized by social and communication impairments as well as repetitive or stereotyped behaviours (American Psychiatric Association, 2000). Prompted by the increase in the prevalence ASD, it was recognized as a special needs category under educational laws numbers 1566 and 2817, enacted by the Greek parliament in 1985 and 2000 respectively.

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¶ 113 Leave a comment on paragraph 113 0 [2]In 2000 with Special Education Law (L2817/2000), the Ministry of National Education and Religious Affairs established 54 Diagnostic, Assessment and Support Centers (K D A Y) in the capital cities of each prefecture in Greece. These centers provide diagnosis, assessment and support to all children mainly 3-22 years old and families who have difficulties. In each center, there is an interdisciplinary team, which consists of special teachers from different educational levels and professionals (social worker, psychologist, child-psychiatrist, physiotherapist, speech therapist, etc). These centers according to their constitution can provide early childhood intervention services for young children and parents who need help. The interdisciplinary team undertakes the assessment of the child, provides support and counseling for the child and the family and designs the Individualized Educational Plan for each child. KDAY became K E D D Y (i.e. Centers for Differential Diagnosis and Support of Special Educational Needs )

¶ 114 Leave a comment on paragraph 114 0 under more recent law (Law 3699/2008, art.2), and the centers still provide support for various SEN diagnoses, including guidelines for teachers ( MNERA 2008).

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¶ 116 Leave a comment on paragraph 116 0 [3] See footnote 2.

¶ 117 Leave a comment on paragraph 117 0 [4] See footnote 2.

¶ 118 Leave a comment on paragraph 118 0 [5] Formalised in the 1981 Education Act, ‘SEN’ is the official term used in England in educational settings to refer to children who are involved in special education (Department for Education (DfE), 1981). Children with SEN are those who have “a learning difficulty which calls for special educational provision to be made for them” (DfE, 2014, p. 6). SEN includes communication and interaction difficulties, cognition and learning difficulties, emotional, social and behavioural difficulties, and sensory and/or physical disabilities (DfE, 2014).