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Developmental, familial and educational characteristics of a sample of children with Autism Spectrum Disorders in Greece
Research in Autism Spectrum Disorders 6 (2012) 1297–1303
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Research in Autism Spectrum Disorders Journal homepage: http://ees.elsevier.com/RASD/default.asp
Developmental, familial and educational characteristics of a sample of children with Autism Spectrum Disorders in Greece Aglaia Stampoltzis a,*, Virginia Papatrecha b, Stavroula Polychronopoulou c, Dimitris Mavronas d a
School of Pedagogical and Technological Education (ASPETE), Heraklion 141 21 Athens, Greece 4th High School of Argos, 9, Zografou Street, 21 200 Argos, Greece c University of Athens, 13A, Navarinou Street, 106 80 Athens, Greece d KEDDY B’ Athinas, 269, Irakliou Avenue, 142 31 Athens, Greece b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 6 May 2012 Accepted 7 May 2012
The aim of this study is to describe the developmental, familial and educational characteristics of 91 children with a clinical diagnosis of autism spectrum disorders (ASDs), from one educational district of Athens, Greece. Records of the 91 children, aged 4–14 years old, were examined with respect to sex, age of diagnosis, type of ASDs, school placement, co-existing disorders, parental ages, type of conception, prematurity and birth order. The results indicated that the boy:girl ratio was 4.3:1 while the average age of diagnosis was 6 years which implies a delay in the early detection of ASDs. Children with typical autism constituted 80% of the sample, while the Asperger group constituted 20%. The majority of pupils were served in general education, and only a small percentage attended special schools. The preferable type of support was one-to-one support in the classroom (47%). Among the most common disorders that coexist with the ASDs was ADHD, epilepsy, dyslexia and learning difficulties. Interesting findings were obtained for the advanced parental age, birth order and the relationship of assisted conception and premature birth with the presence of autism. The present study offers some useful insights about the characteristics of ASDs in a Greek school-based sample. ß 2012 Elsevier Ltd. All rights reserved.
Keywords: Autism spectrum disorder Greece Prevalence Diagnosis
1. Introduction Autism spectrum disorders (ASDs) are a group of developmental disorders characterized by deficits in socialization, communication, and a restricted repertoire of interests and activities. ASDs include autistic disorder, Asperger’s syndrome, Rett syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) and childhood disintegrative disorder (American Psychiatric Association, 2000). Siklos and Kerns (2007) and Gaspar de Alba and Bodfish (2011) found higher prevalence rates of autistic disorder and Asperger syndrome compared with the other pervasive developmental disorders. Additionally, the course of ASD symptoms appears to be lifelong, at least for a substantial number of cases (Matson & Kozlowski, 2011). Recent epidemiologic studies have confirmed that ASDs are more common than previously thought and that the number of children diagnosed with the disorder has been rising at a rapid rate. The most recent estimates of ASD in the United States are as high as 10.6 per 1,000 children (Centers for Disease Control & Prevention, 2007). In a Swedish study by Arvidsson et al. (1997), the general population prevalence for autism was 31 in 10,000 children. Scott, Baron-Cohen, Bolton, and Brayne
* Corresponding author. Tel.: +30 210 61 28 597. E-mail addresses: [email protected] (A. Stampoltzis), [email protected] (V. Papatrecha), [email protected] (S. Polychronopoulou), [email protected] (D. Mavronas). 1750-9467/$ – see front matter ß 2012 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.rasd.2012.05.004
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(2002), in a study in Cambridgeshire of UK, found a prevalence of ASD in the age group 5–11 years of almost 0.6 percent (57 in 10,000). In a review of 32 studies from several countries published between 1966 and 2001, Fombonne (2003a, 2003b) reported that while earlier research estimated ASDs prevalence to be around 30/10,000 children, more recent studies estimated about 60/10,000 children. Reasons cited for the increase in autistic disorders include better awareness, definition expansion, changes in the diagnostic criteria over the years, differences in research methodologies, environmental and cultural factors which affect the prevalence in most of the developed nations, better service provision for ASD children and possibly a true prevalence increase (Arvidsson et al., 1997; Fernell et al., 2010; Leonard et al., 2010; Lung, Chiang, Lin, & Shu, 2011; Matson & Kozlowski, 2011). ASDs are now known to have a strong neurodevelopmental component (Leonard et al., 2010; Matson, Mahan, Hess, Fodstad, & Neal, 2010; Yates & Couteur, 2008). While the cause of autism is currently unknown, it has been well reported that in addition to impaired socialization, communication, and stereotypical behaviors, autism spectrum disorders include a wide variety of other possible developmental delays, intellectual disabilities, medical issues, and co-morbid disorders up to 72% of cases (Fernell & Gillberg, 2010; Lung et al., 2011; Matson et al., 2010). The most common comorbid disorders are sleeping and feeding problems (Nicholas et al., 2008; Richdale & Schreck, 2009; Valicenti-McDermott, McVicar, Cohen, Wershil, & Shinnar, 2008), anxiety disorders and phobias, ADHD, dyslexia and dyspraxia (Gargaro, Rinehart, Bradshaw, Tonge, & Sheppard, 2010; Gaspar de Alba & Bodfish, 2011; Kelley, Naigles, & Fein, 2010; Zafeiriou, Ververi, & Vargiami, 2007). The presence of ASD has also been highlighted in epilepsy (Arvidsson et al., 1997; Fernell et al., 2010; Turk et al., 2009; Yates & Couteur, 2008), and in children with different medical/genetic syndromes (Fernell & Gillberg, 2010). A sex difference in the prevalence of ASDs has been well documented in epidemiologic studies since the 1980s, and males with an ASD outnumber females with an ASD ratio of about 4–5:1 (Holtmann, Bolte, & Poustka, 2007; McLennan, Lord, & Schopler, 1993). All subtypes of ASDs are more commonly observed in males with the exception of Rett syndrome, a neurodevelopmental disorder that affects predominantly females (Giarelli et al., 2010). Several studies on ASDs report that these disorders are diagnosed more often in boys than in girls (Fernell & Gillberg, 2010; Fernell et al., 2010; Jo´nsdo´ttir, ´ lason, 2011; Kelley et al., 2010; Nicholas et al., 2008; Siklos & Kerns, 2007). In Saemundsen, Antonsdo´ttir, Sigurdardo´ttir, & O addition, girls, especially those without cognitive impairment, may be formally identified at a later age than boys (Siklos & Kerns, 2007). It is not known why males outnumber females, although this phenomenon has been recognized since the first descriptions of ASD by Kanner and Asperger. Many studies have found that early diagnosis offers better long-term prognosis for ASDs. Despite the fact that the symptoms of ASDs can be reliably diagnosed by the age of 30 months (Giarelli et al., 2010; Jo´nsdo´ttir et al., 2011), on average, the diagnosis does not take place until the child is approximately 5–6 years of age (Howlin & Asgharian, 1999; Siklos & Kerns, 2007). The delay in providing early diagnosis may be due to: (1) the variability in the nature and development of autism in children; (2) the limitations of the assessment itself, including scarcity of assessment measures suitable for use with babies and infants, limited time available for the assessment, strong reliance on parent reports (Gaspar de Alba & Bodfish, 2011; Twyman, Maxim, Leet, & Ultmann, 2009); (3) a lack of specialized training among professionals to recognize the symptoms of ASDs and the fear of ‘‘labeling’’ a child prematurely (Nicholas et al., 2008; Ruble & McGrew, 2007). In addition, parents of children with Asperger syndrome experienced significant longer delays in obtaining a diagnosis than those with a child with autism (Howlin & Asgharian, 1999). The early detection and diagnosis of ASD in young children is essential for providing services, developing a treatment plan, and for preparing the parents to adapt to a child with a disability (Itzchak & Zachor, 2011; Matson, Wilkins, & Gonzalez, 2008; Twyman et al., 2009). Early diagnosis is also essential for implementing early interventions known to have a positive effect on later outcome (Bryson, Rogers, & Fombonne, 2003; Itzchak & Zachor, 2011; Jo´nsdo´ttir et al., 2011; Makrygianni & Reed, 2010; Matson et al., 2008). The educational options for ASD children are multiple. Intellectual level, language skills, adaptive behaviour abilities and severity of autism, have been identified as key factors in determining the segregated or inclusive placement for ASD individuals (Loxley & Thomas, 2001; Ozonoff & Cathcart, 1998). In the past, children with ASD were educated exclusively in special schools, while from the ‘80s educational support for ASD children has moved towards a more inclusive model of education (special classes or one-to-one support in the mainstream classroom). Educating students with autism presents many challenges to the multidisciplinary professionals and staff charged with providing an appropriate education. Another issue reported in the literature is the effectiveness of different therapeutic interventions for children with ASDs. Carter et al. (2011) in an Australian sample of preschool children with ASDs, found that the most commonly reported service was speech/language pathology with the 43% of families indicating they had used this intervention. Generic early intervention (31%) was the next most frequently used service, followed by occupational therapy (21%) (Carter et al., 2011). Other useful services reported in the literature are family therapy, music therapy, play therapy (Papageorgiou & Kalyva, 2010; Siklos & Kerns, 2007). In assessing possible causes for the increase of autism prevalence in recent years, several studies examined family factors such as, heredity, maternal and parental age, in relation to ASDs. Researchers have made a connection between the increasing age of fathers and the incidence of autism (Gabis, Raz, & Kesner-Baruch, 2010). Recently, it was shown that both maternal and paternal age independently contribute to increased autism spectrum disorders risk in the offspring (Shelton, Tancredi, & Hertz-Picciotto, 2010). A major study in US found that the age of both mothers and fathers was linked to the risk of a child developing autism. The study results suggest that mothers aged 35 or older have a 30% greater chance of having an
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autistic child compared to mothers aged 25–29, while fathers older than 40 had a 40% higher risk than those aged 25–29 (Durkin et al., 2008). In evaluating the association between parental age and autism risk, it is important to account for other variables which may modify the association. Birth order is a potentially confounding factor because it is positively associated with parental age and has been reported in some studies to be associated with autism risk. Some studies report that first born children, are at increased risk of ASDs (Croen, Najjar, Fireman, & Grether, 2007; Durkin et al., 2008) while others report that 54% of ASD offsprings were second born children and 25% were third in birth order (Twyman et al., 2009). The results seem to be inconclusive. Several studies indicated a significant relationship between environmental factors such as pre and postnatal conditions and risk of ASDs. The increased risk of autistic disorders related to preterm birth is mediated primarily by prenatal and neonatal complications that occur more commonly among preterm infants (Buchmayer et al., 2009). Johnson et al. (2010) conducted a prospective study of all births <26 weeks gestation in the United Kingdom and Ireland in 1995, and they found that extremely preterm children are at increased risk for autism spectrum symptoms in middle childhood. These symptoms and disorders were associated with neurocognitive outcomes, suggesting that ASD may result from abnormal brain development in this population (Johnson et al., 2010). The association between preterm birth and ASDs is confirmed by many researches in large population samples (Arvidsson et al., 1997; Johnson & Marlow, 2009; Limperopoulos, 2009; Msall, 2010). In the last two decades, the use of assisted conception has increased and the relationship between assisted conception and autism attracted the interest of the researchers. Hvidtjorn et al. (2011) identified eight studies assessing the risk of ASD in children born after assisted conception. The results of these studies are inconsistent and only one study found a significantly higher occurrence of ASD in children born after assisted conception compared with children born after natural conception. On the other hand, Maimburg and Vaeth (2007) found a 59% decreased risk for developing infantile autism among children conceived after assisted conception. As a result, the relationship between ASD and assisted conception is still not well understood. Undoubtedly, autism is a complex, lifelong neurodevelopmental condition, multifactorial in origin, with genetic heritability and environmental factors which possibly influence its expression. Interest and awareness of autism within public, medical and educational domains has increased over recent years, but there are still controversial topics which need further investigation because of the impact of ASD on the health, wellbeing and quality of life of individuals and their families (Knapp, Romeo, & Beecham, 2009). 1.1. Autism in the Greek educational system Autism has been recognized as a special need category by the Laws 1566 and 2817 which were voted by the Greek parliament in 1985 and 2000 respectively. In 2008, a new law (3699) was voted to determine the educational placements for children with autism according to their cognitive, language and social development (Syriopoulou-Delli, 2010). Furthermore, there is insufficient and incomplete data on the exact number of Greek people with ASDs. According to Greek researchers who try to establish the prevalence of autism in Greece, the number of children and adults with ASD is assumed to be proportional to the population of the country. According to the Centre of Educational Research (KKE, 2004, 2005, 2006), the percentage of students with autism in the public school population for 2003–2004 was 0.04% (total number of ASD students: 551). In 2004–2005 this percentage was 0.07% (total number of ASD students: 953) and in 2005–2006 the percentage rose to 0.08% (total number of ASD students: 1224). These figures show that the number of pupils with autism in Greece is rising every year. The boy/girl ratio was 4.3/1, 3/ 1 and 3.5/1 respectively. Furthermore, some of the successes in regards to autism is the progress which has been made in raising public awareness and the recent legislation concerning the educational rights of autistic children. The present study aims to study autism and its manifestation in a sample of children from the north part of Athens, the capital of Greece. The objective is to describe for the first time the developmental, familial and educational characteristics of Greek children with ASD in an attempt to compare their profiles with the profile of ASD children from other developed countries. Moreover, an in-depth examination of the characteristics of the sample (sex, age, type of ASD, school placement, type of support, heredity, comorbidity, parental age and other risk factors) may allow a preliminary focus on certain aspects of the autistic condition in Greece in order to gain a broader and more comprehensive understanding of the disorder. 2. Method 2.1. Study setting Athens is the capital and the largest city of Greece. The study was conducted in one educational district of Athens, in the northern part of Athens, which is consisting of 18 municipalities with a pre-school and primary school population of approximately 29,000 children. The school population of the area is ethnically quite homogenous, with children of families with high or medium socioeconomic status. 2.2. Participants Participants were recruited from the Differential Diagnosis, Diagnosis and Support for Special Educational Needs Centre (KEDDY) which is responsible to provide diagnosis of special educational needs to the school population of one educational
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district of Athens. More specifically, 91 children 4–14 years old with a formal diagnosis of Autism Spectrum Disorder (ASD) took part in the study and their personal records were fully scrutinized. All 91 children had a Greek nationality. They had been assessed by the multi-professional team of the KEDDY and received a formal diagnosis of ASD during 2008–2010. The total number of children referred to the KEDDY in the same period was 2665. In other words, ASD children constituted 3.41% of the total cases referred to the KEEDY suspected of having some type of learning difficulty or disability. 2.3. Procedure The study was approved by the ethics committee of the KEDDY. Every effort has been done to ensure the anonymity of the participants and their families. Data collection lasted from October 2010 to May 2011. Data management and statistical analyses were performed using the SPSS version 15.0. 2.4. Materials The data collection instrument was developed by the researcher on the basis of the literature and her clinical experience. The first version of the questionnaire was assessed by the staff of the KEDDY and two questions were eliminated. The final version of the questionnaire consisted of 15 items concerning a variety of developmental, medical, familial and educational variables. The Cronbach’s alpha co-efficient of the questionnaire was medium (0.551). 3. Results A total of 91 children, aged 4–14 years old, received a diagnosis of ASD from the KEDDY during the years 2008–2010. The prevalence rate of ASDs cannot be calculated for three reasons: there is no accurate and complete data for the total public school population of the area, there are children with severe autism who attend private special placements and are not calculated in the school population and KEDDY is not the only public institution which offers diagnostic services for autism and other developmental disabilities. Children raising suspicion of suffering from ASD are also referred to other public mental health services and hospitals of the area. The mean age of the sample was 9.04 years old (s.d = 2.64). The minimum age of the children was 4 years old and the maximum age 14 years old. The majority of the children in the present study (60%) had an age of 6–11 years old, and, as a result, they are enrolled in primary schools. The boy:girl ratio was 4.3:1 (74 boys and 17 girls), a sex difference which is well documented in the literature (Holtmann et al., 2007; Nicholas et al., 2008). On average, the diagnosis was obtained at 6.04 years of age (s.d. = 2.49, range 2–13 years). There was no difference in the mean age of diagnosis for boys and girls. In addition, the mean age of diagnosis for children with Asperger syndrome was 8.67 years old (s.d. = 2.7, range 4–13 years). The majority of the children received the diagnosis after entering formal education. Among the total group of 91 children, 73 (80%) met the criteria for typical autism and were classified as the autistic group, while 18 (20%) met the cognitive and clinical description of Asperger syndrome and were classified as the Asperger or high functioning autism group. Children with other developmental disorders (Rett syndrome or childhood disintegrative disorder) were not detected in the sample. In relation to birth order, 54 children with ASD (59%) were the first child of the family, 27 children (30%) were second born children, 3 (3%) were the third child in the family, 2 (2%) were twins and for 5 (6%) there is no available information. Children in the present study attended different types of school according to the severity of ASD characteristics. The great majority of the pupils are mainstreamed in general schools. 39 children (43%) attend general primary school, 25 children (27%) attend general kindergarden, 17 children (19%) attend general secondary school while 10 children (11%) attend special schools (of primary or secondary level). The types of support for ASD children offered by the Greek state according to the Greek Law for Special Educational Needs (3699/2008) are inclusive classes within the mainstream school or one-to-one support in the classroom. In the present sample, 42 children (47%) are mainstreamed into regular classes with one-to one support while 15 children (16%) attend inclusive classes within the school for several hours daily. The rest 23 children (26%) have no support at school although they are diagnosed with autism. Children with ASD in Greece are likely to receive after-school specialized therapies to develop language, communication and social skills. In this sample, the majority of children (up to 78%) receive private speech, occupational or music therapy in a weekly basis. The presence of co-existing disorders was assessed on the basis of information in the children’s records. In the present sample, 15 children (17%) are affected by other disabilities. The most common identified disorders were: Attention Deficit Hyperactivity Disorder (6%), epilepsy (5%), dyslexia (3%) and other learning difficulties (3%). Family factors such as siblings with autism or other special educational needs are also examined in the present study. 6 children (7%) have a sibling with autism while 9 children (10%) have a sibling with learning difficulties (mainly dyslexia). Parental age at the time of birth of the child is also studied as a risk factor for autistic disorder. The majority of mothers (68%) and the majority of fathers (58%) belong to the age group 30–39 years old in this study. Another fourth of the fathers (25%) are in the 40–49-year old age range, while only 8% of the mothers are between 40–49 years old. The mean maternal age
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is 33,14 (s.d. = 4.51, minimum = 20 years, maximum = 45 years). The mean paternal is 37.22 (s.d. = 5.76, minimum = 26 years, maximum = 53 years). A positive correlation (r = .509, p < 0.01) was found between maternal and paternal age. Type of conception is also recorded in the children’s case history. Fifty-five children of the sample (61%) were born after natural conception while 32 children (35%) were born after assisted conception, a high percentage of assisted conception for a sample from one area of Athens. For 4 children (4%), there was no available information. Preterm birth is also recorded for 23% children of the sample. Chi-square tests were used to examine age and sex differences in the characteristics of the children. Sex has been found to affect type of school (x2 = 10.154, df = 4, p = 0.038) and type of support (x2 = 9.758, df = 2, p = 0.008). Special schools accommodated only boys with ASD. The percentage of boys and girls in general primary school was 85% and 15%, respectively. The percentage of boys and girls in general secondary school was 88% and 12%, respectively. In the preschool years, there seems to be a tendency of including greater number of boys than girls in the mainstream kindergarden (68% versus 32%). In relation to type of support for ASD children, one-to-one-support in the classroom receives more boys than girls with ASD (83% versus 17%). Furthermore, 53% of the boys of the sample and 47% of the girls attend inclusion class in the general school. Statistical significant differences were observed in relation to age for the variables type of school (x2 = 66.542, df = 4, p = 0.000) and type of support (x2 = 10.912, df = 2, p = 0.004). Younger children with ASD (4–11 years old) and older children with ASD (12–14 years old) are distributed equally to special schools (44% and 56%, respectively) while the younger group attends mainly general primary school (92%). In addition, the great majority of children aged 4–11 years receive support in the inclusion class in comparison to the children aged 12–14 years (93% versus 7%). One-to-one support in the classroom is also offered mainly to the younger age group in comparison to older age group (79% versus 21%). 4. Discussion The present study supports the notion that ASDs occurs in every nation of the world, irrespective of cultural, social and economic factors, and there is an international agreement on the primary characteristics and the validity of ASDs as a diagnostic category. Most children in the present sample (80%) are classified under the autistic category while the rest (20%) are diagnosed with Asperger syndrome. The literature demonstrates that autism and Asperger syndrome are the dominant disorders in the autistic spectrum in comparison to the other pervasive developmental disorders (Arvidsson et al., 1997; Fernell & Gillberg, 2010; Fernell et al., 2010). Although the prevalence for ASDs in this study cannot be estimated, an increasing number of children with ASDs are educated in the Greek public general and special schools (KEE, 2004, 2005, 2006). The greater number of boys than girls identified in this study is in line with one of the most consistent features of autism which is the predominance among males, with approximately four males to every female (Giarelli et al., 2010; Nicholas et al., 2008; Fernell & Gillberg, 2010; Fernell et al., 2010). The majority of the children in the present study were 6–11 years old which means that the prevalence for autism is slightly higher in the primary school age because the clinical characteristics and the developmental deviations of the children with ASDs are more obvious, identifiable and stable in this age group. A similar age-specific prevalence is reported by Kielinen (2005). An interesting finding which must be paid attention is the delay in the diagnosis of autism in the Greek sample. Many children with ASDs are neither identified nor provided with suitable early interventions until they enter the demanding setting of primary school or even later, for the Asperger group (who received a diagnosis on average at 8.7 years). Delays in diagnosis may have implications for the quality of education offered to the children, for the implementation of suitable interventions in domains such as communication and language, and for the parents of the ASD children who are not offered appropriate help and support (Bryson et al., 2003; Itzchak & Zachor, 2011; Makrygianni & Reed, 2010; Matson et al., 2008). In addition, delays in diagnosis may have wider implications for families because of the hereditability of autism to siblings. For any family with a child with autism or Asperger syndrome, there is an increased possibility that other children in the family may have social, linguistic, or other cognitive problems (Howlin & Asgharian, 1999; Jo´nsdo´ttir et al., 2011). A remarkable result emerging from this study is the educational placement of ASD children. The great majority of the pupils (89%) attend general education and 63% receive special education services within general school. This trend may be the result of the implementation of the Law 3699 which gives Greek parents the right to choose between special or mainstream education for their child. In addition, the above medium socio-economic status and the educational level of the families in the present study may explain the preference of mainstreaming education for the ASD children. These families may have more resources from which to draw support and information for the advantages of mainstreaming education for ASD children. However, the research literature does not recommend any particular education setting as the most appropriate for children and students with ASD. It discusses positive outcomes across a range of settings. The type of school, the teaching methods and the curriculum content are all key aspects of an effective educational program for students with autism (Loxley & Thomas, 2001; Roberts, 2004). The study also revealed that age and sex affect the school placement and the support of the ASD pupils in the Greek educational system. Younger children (4–11 years old) seem to be more easily included in mainstream classrooms than the older children (12–14 years old). The later they were not offered extra support in the classroom or they were transferred to
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special schools. The Greek educational system seems to have difficulty to include older pupils with ASD in the mainstream school, because of the demanding curriculum content and the lack of appropriate teaching accommodations and trained personnel in secondary education. As far as sex is concerned, boys are likely to be more severely affected by autism than girls because none of the girls of the sample attended special school. Moreover, 83% of the boys of the sample were eligible for extra support in the classroom in comparison to 17% of the girls. This finding seems to contradict the trend reported in the literature which indicates that girls with autism are more often cognitively impaired and more severely affected than boys (Nicholas et al., 2008). In addition, pupils in the present sample receive after school interventions (language, occupational, music therapy, etc.) but it is not sure if these interventions produce significant gains in many of such children, when the diagnosis came late. The present study also provides evidence for the association of autism with other disabilities, such as ADHD, epilepsy, dyslexia and learning difficulties. The comorbidity of autism with ADHD and epilepsy is often reported in the literature (Arvidsson et al., 1997; Giarelli et al., 2010; Gargaro et al., 2010). From the numerous prenatal and perinatal factors reported as potential risk factors for autism in the literature (Arvidsson et al., 1997; Gabis et al., 2010; Gardener, Spiegelman, & Buka, 2009; Johnson & Marlow, 2009), five factors emerged in the present study: advanced paternal and maternal age, preterm birth, being first born versus later born and being born after assisted conception. The fact that one third of the children in the present sample were born after assisted conception must be considered together with the finding of advanced maternal and paternal age. The small number of participants in our sample together with the interplay between prenatal factors, perinatal factors and other covariates preclude us from drawing any conclusive results for possible causes of autism. However, the present study allows an in-depth examination of some aspects and characteristics of ASDs in the Greek sample. A number of limitations exist in the present study. The results concern only the specific area of Athens where the study was conducted and they are not representative of the whole Athens school population. Data on the cognitive level, language skills and social adaptability of the participants are not included and this fact makes difficult to explain the move towards mainstreaming and inclusion for the great majority of ASD pupils in the present sample. No comparisons can be made between the study group and the total population with reference to maternal and paternal age, type of conception, birth order and postnatal risk conditions.
5. Conclusion The present study is a first report on the characteristics of ASD in a Greek school-based sample. It underlines the importance of case finding and screening the school-age population for autism to ensure that children with ASDs are being identified and provided with the appropriate education. It provides the foundation for larger epidemiological studies in different areas of Greece to have more precise information about the extent of the condition and to monitor the trends and characteristics of ASDs identified in the present study. Greek pupils with autism seem to share common characteristics with pupils in other developed countries, confirming that autism is an international phenomenon. Inclusive or mainstreaming education seems to gain ground in the Greek educational system in comparison to the segregated model of the past. Future research may have the opportunity to study the interplay between familial, genetic and perinatal factors in the aetiology of autism in the Greek context. References American Psychiatric Association. (2000). Diagnostic and Statistical Manual of Mental Disorders (4th ed.). Washington, DC: Author. Arvidsson, T., Danielsson, B., Forsberg, P., Gillberg, C., Johansson, M., & Kjellgren, G. (1997). Autism in 3–6 year old children in a suburb of Goteborg, Sweden. Autism, 1(2), 163–173. Bryson, S. E., Rogers, S. J., & Fombonne, E. (2003). Autism spectrum disorders: Early detection, intervention, education, and psychopharmacological management. Canadian Journal of Psychiatry, Revue Canadienne De Psychiatrie48(8), 506–516. Buchmayer, S., Johansson, S., Johansson, A., Hultman, C. M., Sparen, P., & Cnattingius, S. (2009). Can association between preterm birth and autism be explained by maternal or neonatal morbidity? Pediatrics, 124(5), 817–825. Carter, M., Roberts, J., Williams, K., Evans, D., Parmenter, T., Silove, N., et al. (2011). Interventions used with an Australian sample of preschool children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 1033–1041. Centre for Educational Research (KEE) (2004, 2005, 2006). The imprinting of the Greek educational system in terms of school units: Pupils with special educational needs. Athens: Author. Centers for Disease Control and Prevention. (2007). Prevalence of autism spectrum disorders: Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2002. Morbidity and Mortality Weekly Report, 58(SS-1), 12–28, Available at: www.cdc.gov/mmwr/preview/mmwrhtml/ss5601a2.htm (accessed 10.07.10). Croen, L. A., Najjar, D. V., Fireman, B., & Grether, J. K. (2007). Maternal and paternal age and risk of autism spectrum disorders. Archives of Pediatrics & Adolescent Medicine, 161, 334–340. Durkin, M. S., Maenner, M. J., Newschaffer, C. J., Lee, L. C., Cunniff, C. M., Daniels, J. L., et al. (2008). Advanced parental age and the risk of autism spectrum disorder. American Journal of Epidemiology, 168, 1268–1276. Fernell, E., & Gillberg, C. (2010). Autism spectrum disorder diagnoses in Stockholm preschoolers. Research in Developmental Disabilities, 3, 680–685. Fernell, E., Hedvall, A., Norrelgen, F., Eriksson, M., Hoglund-Carlsson, L., Barnevik-Olsson, M., et al. (2010). Developmental profiles in preschool children with autism spectrum disorders referred for intervention. Research in Developmental Disabilities, 31, 790–799. Fombonne, E. (2003a). Epidemiological surveys of autism and other pervasive developmental disorders: An update. Journal of Autism and Developmental Disorders, 33, 365–382. Fombonne, E. (2003b). The prevalence of autism. Journal of the American Medical Association, 289, 87–89. Gabis, L., Raz, R., & Kesner-Baruch, Y. (2010). Paternal age in autism spectrum disorders and ADHD. Pediatric Neurology, 43(4), 300–302. Gardener, H., Spiegelman, D., & Buka, S. L. (2009). Prenatal risk factors for autism: Comprehensive meta-analysis. The British Journal of Psychiatry, 195, 7–14.
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Research in Autism Spectrum Disorders Journal homepage: http://ees.elsevier.com/RASD/default.asp
Developmental, familial and educational characteristics of a sample of children with Autism Spectrum Disorders in Greece Aglaia Stampoltzis a,*, Virginia Papatrecha b, Stavroula Polychronopoulou c, Dimitris Mavronas d a
School of Pedagogical and Technological Education (ASPETE), Heraklion 141 21 Athens, Greece 4th High School of Argos, 9, Zografou Street, 21 200 Argos, Greece c University of Athens, 13A, Navarinou Street, 106 80 Athens, Greece d KEDDY B’ Athinas, 269, Irakliou Avenue, 142 31 Athens, Greece b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 6 May 2012 Accepted 7 May 2012
The aim of this study is to describe the developmental, familial and educational characteristics of 91 children with a clinical diagnosis of autism spectrum disorders (ASDs), from one educational district of Athens, Greece. Records of the 91 children, aged 4–14 years old, were examined with respect to sex, age of diagnosis, type of ASDs, school placement, co-existing disorders, parental ages, type of conception, prematurity and birth order. The results indicated that the boy:girl ratio was 4.3:1 while the average age of diagnosis was 6 years which implies a delay in the early detection of ASDs. Children with typical autism constituted 80% of the sample, while the Asperger group constituted 20%. The majority of pupils were served in general education, and only a small percentage attended special schools. The preferable type of support was one-to-one support in the classroom (47%). Among the most common disorders that coexist with the ASDs was ADHD, epilepsy, dyslexia and learning difficulties. Interesting findings were obtained for the advanced parental age, birth order and the relationship of assisted conception and premature birth with the presence of autism. The present study offers some useful insights about the characteristics of ASDs in a Greek school-based sample. ß 2012 Elsevier Ltd. All rights reserved.
Keywords: Autism spectrum disorder Greece Prevalence Diagnosis
1. Introduction Autism spectrum disorders (ASDs) are a group of developmental disorders characterized by deficits in socialization, communication, and a restricted repertoire of interests and activities. ASDs include autistic disorder, Asperger’s syndrome, Rett syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) and childhood disintegrative disorder (American Psychiatric Association, 2000). Siklos and Kerns (2007) and Gaspar de Alba and Bodfish (2011) found higher prevalence rates of autistic disorder and Asperger syndrome compared with the other pervasive developmental disorders. Additionally, the course of ASD symptoms appears to be lifelong, at least for a substantial number of cases (Matson & Kozlowski, 2011). Recent epidemiologic studies have confirmed that ASDs are more common than previously thought and that the number of children diagnosed with the disorder has been rising at a rapid rate. The most recent estimates of ASD in the United States are as high as 10.6 per 1,000 children (Centers for Disease Control & Prevention, 2007). In a Swedish study by Arvidsson et al. (1997), the general population prevalence for autism was 31 in 10,000 children. Scott, Baron-Cohen, Bolton, and Brayne
* Corresponding author. Tel.: +30 210 61 28 597. E-mail addresses: [email protected] (A. Stampoltzis), [email protected] (V. Papatrecha), [email protected] (S. Polychronopoulou), [email protected] (D. Mavronas). 1750-9467/$ – see front matter ß 2012 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.rasd.2012.05.004
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(2002), in a study in Cambridgeshire of UK, found a prevalence of ASD in the age group 5–11 years of almost 0.6 percent (57 in 10,000). In a review of 32 studies from several countries published between 1966 and 2001, Fombonne (2003a, 2003b) reported that while earlier research estimated ASDs prevalence to be around 30/10,000 children, more recent studies estimated about 60/10,000 children. Reasons cited for the increase in autistic disorders include better awareness, definition expansion, changes in the diagnostic criteria over the years, differences in research methodologies, environmental and cultural factors which affect the prevalence in most of the developed nations, better service provision for ASD children and possibly a true prevalence increase (Arvidsson et al., 1997; Fernell et al., 2010; Leonard et al., 2010; Lung, Chiang, Lin, & Shu, 2011; Matson & Kozlowski, 2011). ASDs are now known to have a strong neurodevelopmental component (Leonard et al., 2010; Matson, Mahan, Hess, Fodstad, & Neal, 2010; Yates & Couteur, 2008). While the cause of autism is currently unknown, it has been well reported that in addition to impaired socialization, communication, and stereotypical behaviors, autism spectrum disorders include a wide variety of other possible developmental delays, intellectual disabilities, medical issues, and co-morbid disorders up to 72% of cases (Fernell & Gillberg, 2010; Lung et al., 2011; Matson et al., 2010). The most common comorbid disorders are sleeping and feeding problems (Nicholas et al., 2008; Richdale & Schreck, 2009; Valicenti-McDermott, McVicar, Cohen, Wershil, & Shinnar, 2008), anxiety disorders and phobias, ADHD, dyslexia and dyspraxia (Gargaro, Rinehart, Bradshaw, Tonge, & Sheppard, 2010; Gaspar de Alba & Bodfish, 2011; Kelley, Naigles, & Fein, 2010; Zafeiriou, Ververi, & Vargiami, 2007). The presence of ASD has also been highlighted in epilepsy (Arvidsson et al., 1997; Fernell et al., 2010; Turk et al., 2009; Yates & Couteur, 2008), and in children with different medical/genetic syndromes (Fernell & Gillberg, 2010). A sex difference in the prevalence of ASDs has been well documented in epidemiologic studies since the 1980s, and males with an ASD outnumber females with an ASD ratio of about 4–5:1 (Holtmann, Bolte, & Poustka, 2007; McLennan, Lord, & Schopler, 1993). All subtypes of ASDs are more commonly observed in males with the exception of Rett syndrome, a neurodevelopmental disorder that affects predominantly females (Giarelli et al., 2010). Several studies on ASDs report that these disorders are diagnosed more often in boys than in girls (Fernell & Gillberg, 2010; Fernell et al., 2010; Jo´nsdo´ttir, ´ lason, 2011; Kelley et al., 2010; Nicholas et al., 2008; Siklos & Kerns, 2007). In Saemundsen, Antonsdo´ttir, Sigurdardo´ttir, & O addition, girls, especially those without cognitive impairment, may be formally identified at a later age than boys (Siklos & Kerns, 2007). It is not known why males outnumber females, although this phenomenon has been recognized since the first descriptions of ASD by Kanner and Asperger. Many studies have found that early diagnosis offers better long-term prognosis for ASDs. Despite the fact that the symptoms of ASDs can be reliably diagnosed by the age of 30 months (Giarelli et al., 2010; Jo´nsdo´ttir et al., 2011), on average, the diagnosis does not take place until the child is approximately 5–6 years of age (Howlin & Asgharian, 1999; Siklos & Kerns, 2007). The delay in providing early diagnosis may be due to: (1) the variability in the nature and development of autism in children; (2) the limitations of the assessment itself, including scarcity of assessment measures suitable for use with babies and infants, limited time available for the assessment, strong reliance on parent reports (Gaspar de Alba & Bodfish, 2011; Twyman, Maxim, Leet, & Ultmann, 2009); (3) a lack of specialized training among professionals to recognize the symptoms of ASDs and the fear of ‘‘labeling’’ a child prematurely (Nicholas et al., 2008; Ruble & McGrew, 2007). In addition, parents of children with Asperger syndrome experienced significant longer delays in obtaining a diagnosis than those with a child with autism (Howlin & Asgharian, 1999). The early detection and diagnosis of ASD in young children is essential for providing services, developing a treatment plan, and for preparing the parents to adapt to a child with a disability (Itzchak & Zachor, 2011; Matson, Wilkins, & Gonzalez, 2008; Twyman et al., 2009). Early diagnosis is also essential for implementing early interventions known to have a positive effect on later outcome (Bryson, Rogers, & Fombonne, 2003; Itzchak & Zachor, 2011; Jo´nsdo´ttir et al., 2011; Makrygianni & Reed, 2010; Matson et al., 2008). The educational options for ASD children are multiple. Intellectual level, language skills, adaptive behaviour abilities and severity of autism, have been identified as key factors in determining the segregated or inclusive placement for ASD individuals (Loxley & Thomas, 2001; Ozonoff & Cathcart, 1998). In the past, children with ASD were educated exclusively in special schools, while from the ‘80s educational support for ASD children has moved towards a more inclusive model of education (special classes or one-to-one support in the mainstream classroom). Educating students with autism presents many challenges to the multidisciplinary professionals and staff charged with providing an appropriate education. Another issue reported in the literature is the effectiveness of different therapeutic interventions for children with ASDs. Carter et al. (2011) in an Australian sample of preschool children with ASDs, found that the most commonly reported service was speech/language pathology with the 43% of families indicating they had used this intervention. Generic early intervention (31%) was the next most frequently used service, followed by occupational therapy (21%) (Carter et al., 2011). Other useful services reported in the literature are family therapy, music therapy, play therapy (Papageorgiou & Kalyva, 2010; Siklos & Kerns, 2007). In assessing possible causes for the increase of autism prevalence in recent years, several studies examined family factors such as, heredity, maternal and parental age, in relation to ASDs. Researchers have made a connection between the increasing age of fathers and the incidence of autism (Gabis, Raz, & Kesner-Baruch, 2010). Recently, it was shown that both maternal and paternal age independently contribute to increased autism spectrum disorders risk in the offspring (Shelton, Tancredi, & Hertz-Picciotto, 2010). A major study in US found that the age of both mothers and fathers was linked to the risk of a child developing autism. The study results suggest that mothers aged 35 or older have a 30% greater chance of having an
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autistic child compared to mothers aged 25–29, while fathers older than 40 had a 40% higher risk than those aged 25–29 (Durkin et al., 2008). In evaluating the association between parental age and autism risk, it is important to account for other variables which may modify the association. Birth order is a potentially confounding factor because it is positively associated with parental age and has been reported in some studies to be associated with autism risk. Some studies report that first born children, are at increased risk of ASDs (Croen, Najjar, Fireman, & Grether, 2007; Durkin et al., 2008) while others report that 54% of ASD offsprings were second born children and 25% were third in birth order (Twyman et al., 2009). The results seem to be inconclusive. Several studies indicated a significant relationship between environmental factors such as pre and postnatal conditions and risk of ASDs. The increased risk of autistic disorders related to preterm birth is mediated primarily by prenatal and neonatal complications that occur more commonly among preterm infants (Buchmayer et al., 2009). Johnson et al. (2010) conducted a prospective study of all births <26 weeks gestation in the United Kingdom and Ireland in 1995, and they found that extremely preterm children are at increased risk for autism spectrum symptoms in middle childhood. These symptoms and disorders were associated with neurocognitive outcomes, suggesting that ASD may result from abnormal brain development in this population (Johnson et al., 2010). The association between preterm birth and ASDs is confirmed by many researches in large population samples (Arvidsson et al., 1997; Johnson & Marlow, 2009; Limperopoulos, 2009; Msall, 2010). In the last two decades, the use of assisted conception has increased and the relationship between assisted conception and autism attracted the interest of the researchers. Hvidtjorn et al. (2011) identified eight studies assessing the risk of ASD in children born after assisted conception. The results of these studies are inconsistent and only one study found a significantly higher occurrence of ASD in children born after assisted conception compared with children born after natural conception. On the other hand, Maimburg and Vaeth (2007) found a 59% decreased risk for developing infantile autism among children conceived after assisted conception. As a result, the relationship between ASD and assisted conception is still not well understood. Undoubtedly, autism is a complex, lifelong neurodevelopmental condition, multifactorial in origin, with genetic heritability and environmental factors which possibly influence its expression. Interest and awareness of autism within public, medical and educational domains has increased over recent years, but there are still controversial topics which need further investigation because of the impact of ASD on the health, wellbeing and quality of life of individuals and their families (Knapp, Romeo, & Beecham, 2009). 1.1. Autism in the Greek educational system Autism has been recognized as a special need category by the Laws 1566 and 2817 which were voted by the Greek parliament in 1985 and 2000 respectively. In 2008, a new law (3699) was voted to determine the educational placements for children with autism according to their cognitive, language and social development (Syriopoulou-Delli, 2010). Furthermore, there is insufficient and incomplete data on the exact number of Greek people with ASDs. According to Greek researchers who try to establish the prevalence of autism in Greece, the number of children and adults with ASD is assumed to be proportional to the population of the country. According to the Centre of Educational Research (KKE, 2004, 2005, 2006), the percentage of students with autism in the public school population for 2003–2004 was 0.04% (total number of ASD students: 551). In 2004–2005 this percentage was 0.07% (total number of ASD students: 953) and in 2005–2006 the percentage rose to 0.08% (total number of ASD students: 1224). These figures show that the number of pupils with autism in Greece is rising every year. The boy/girl ratio was 4.3/1, 3/ 1 and 3.5/1 respectively. Furthermore, some of the successes in regards to autism is the progress which has been made in raising public awareness and the recent legislation concerning the educational rights of autistic children. The present study aims to study autism and its manifestation in a sample of children from the north part of Athens, the capital of Greece. The objective is to describe for the first time the developmental, familial and educational characteristics of Greek children with ASD in an attempt to compare their profiles with the profile of ASD children from other developed countries. Moreover, an in-depth examination of the characteristics of the sample (sex, age, type of ASD, school placement, type of support, heredity, comorbidity, parental age and other risk factors) may allow a preliminary focus on certain aspects of the autistic condition in Greece in order to gain a broader and more comprehensive understanding of the disorder. 2. Method 2.1. Study setting Athens is the capital and the largest city of Greece. The study was conducted in one educational district of Athens, in the northern part of Athens, which is consisting of 18 municipalities with a pre-school and primary school population of approximately 29,000 children. The school population of the area is ethnically quite homogenous, with children of families with high or medium socioeconomic status. 2.2. Participants Participants were recruited from the Differential Diagnosis, Diagnosis and Support for Special Educational Needs Centre (KEDDY) which is responsible to provide diagnosis of special educational needs to the school population of one educational
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district of Athens. More specifically, 91 children 4–14 years old with a formal diagnosis of Autism Spectrum Disorder (ASD) took part in the study and their personal records were fully scrutinized. All 91 children had a Greek nationality. They had been assessed by the multi-professional team of the KEDDY and received a formal diagnosis of ASD during 2008–2010. The total number of children referred to the KEDDY in the same period was 2665. In other words, ASD children constituted 3.41% of the total cases referred to the KEEDY suspected of having some type of learning difficulty or disability. 2.3. Procedure The study was approved by the ethics committee of the KEDDY. Every effort has been done to ensure the anonymity of the participants and their families. Data collection lasted from October 2010 to May 2011. Data management and statistical analyses were performed using the SPSS version 15.0. 2.4. Materials The data collection instrument was developed by the researcher on the basis of the literature and her clinical experience. The first version of the questionnaire was assessed by the staff of the KEDDY and two questions were eliminated. The final version of the questionnaire consisted of 15 items concerning a variety of developmental, medical, familial and educational variables. The Cronbach’s alpha co-efficient of the questionnaire was medium (0.551). 3. Results A total of 91 children, aged 4–14 years old, received a diagnosis of ASD from the KEDDY during the years 2008–2010. The prevalence rate of ASDs cannot be calculated for three reasons: there is no accurate and complete data for the total public school population of the area, there are children with severe autism who attend private special placements and are not calculated in the school population and KEDDY is not the only public institution which offers diagnostic services for autism and other developmental disabilities. Children raising suspicion of suffering from ASD are also referred to other public mental health services and hospitals of the area. The mean age of the sample was 9.04 years old (s.d = 2.64). The minimum age of the children was 4 years old and the maximum age 14 years old. The majority of the children in the present study (60%) had an age of 6–11 years old, and, as a result, they are enrolled in primary schools. The boy:girl ratio was 4.3:1 (74 boys and 17 girls), a sex difference which is well documented in the literature (Holtmann et al., 2007; Nicholas et al., 2008). On average, the diagnosis was obtained at 6.04 years of age (s.d. = 2.49, range 2–13 years). There was no difference in the mean age of diagnosis for boys and girls. In addition, the mean age of diagnosis for children with Asperger syndrome was 8.67 years old (s.d. = 2.7, range 4–13 years). The majority of the children received the diagnosis after entering formal education. Among the total group of 91 children, 73 (80%) met the criteria for typical autism and were classified as the autistic group, while 18 (20%) met the cognitive and clinical description of Asperger syndrome and were classified as the Asperger or high functioning autism group. Children with other developmental disorders (Rett syndrome or childhood disintegrative disorder) were not detected in the sample. In relation to birth order, 54 children with ASD (59%) were the first child of the family, 27 children (30%) were second born children, 3 (3%) were the third child in the family, 2 (2%) were twins and for 5 (6%) there is no available information. Children in the present study attended different types of school according to the severity of ASD characteristics. The great majority of the pupils are mainstreamed in general schools. 39 children (43%) attend general primary school, 25 children (27%) attend general kindergarden, 17 children (19%) attend general secondary school while 10 children (11%) attend special schools (of primary or secondary level). The types of support for ASD children offered by the Greek state according to the Greek Law for Special Educational Needs (3699/2008) are inclusive classes within the mainstream school or one-to-one support in the classroom. In the present sample, 42 children (47%) are mainstreamed into regular classes with one-to one support while 15 children (16%) attend inclusive classes within the school for several hours daily. The rest 23 children (26%) have no support at school although they are diagnosed with autism. Children with ASD in Greece are likely to receive after-school specialized therapies to develop language, communication and social skills. In this sample, the majority of children (up to 78%) receive private speech, occupational or music therapy in a weekly basis. The presence of co-existing disorders was assessed on the basis of information in the children’s records. In the present sample, 15 children (17%) are affected by other disabilities. The most common identified disorders were: Attention Deficit Hyperactivity Disorder (6%), epilepsy (5%), dyslexia (3%) and other learning difficulties (3%). Family factors such as siblings with autism or other special educational needs are also examined in the present study. 6 children (7%) have a sibling with autism while 9 children (10%) have a sibling with learning difficulties (mainly dyslexia). Parental age at the time of birth of the child is also studied as a risk factor for autistic disorder. The majority of mothers (68%) and the majority of fathers (58%) belong to the age group 30–39 years old in this study. Another fourth of the fathers (25%) are in the 40–49-year old age range, while only 8% of the mothers are between 40–49 years old. The mean maternal age
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is 33,14 (s.d. = 4.51, minimum = 20 years, maximum = 45 years). The mean paternal is 37.22 (s.d. = 5.76, minimum = 26 years, maximum = 53 years). A positive correlation (r = .509, p < 0.01) was found between maternal and paternal age. Type of conception is also recorded in the children’s case history. Fifty-five children of the sample (61%) were born after natural conception while 32 children (35%) were born after assisted conception, a high percentage of assisted conception for a sample from one area of Athens. For 4 children (4%), there was no available information. Preterm birth is also recorded for 23% children of the sample. Chi-square tests were used to examine age and sex differences in the characteristics of the children. Sex has been found to affect type of school (x2 = 10.154, df = 4, p = 0.038) and type of support (x2 = 9.758, df = 2, p = 0.008). Special schools accommodated only boys with ASD. The percentage of boys and girls in general primary school was 85% and 15%, respectively. The percentage of boys and girls in general secondary school was 88% and 12%, respectively. In the preschool years, there seems to be a tendency of including greater number of boys than girls in the mainstream kindergarden (68% versus 32%). In relation to type of support for ASD children, one-to-one-support in the classroom receives more boys than girls with ASD (83% versus 17%). Furthermore, 53% of the boys of the sample and 47% of the girls attend inclusion class in the general school. Statistical significant differences were observed in relation to age for the variables type of school (x2 = 66.542, df = 4, p = 0.000) and type of support (x2 = 10.912, df = 2, p = 0.004). Younger children with ASD (4–11 years old) and older children with ASD (12–14 years old) are distributed equally to special schools (44% and 56%, respectively) while the younger group attends mainly general primary school (92%). In addition, the great majority of children aged 4–11 years receive support in the inclusion class in comparison to the children aged 12–14 years (93% versus 7%). One-to-one support in the classroom is also offered mainly to the younger age group in comparison to older age group (79% versus 21%). 4. Discussion The present study supports the notion that ASDs occurs in every nation of the world, irrespective of cultural, social and economic factors, and there is an international agreement on the primary characteristics and the validity of ASDs as a diagnostic category. Most children in the present sample (80%) are classified under the autistic category while the rest (20%) are diagnosed with Asperger syndrome. The literature demonstrates that autism and Asperger syndrome are the dominant disorders in the autistic spectrum in comparison to the other pervasive developmental disorders (Arvidsson et al., 1997; Fernell & Gillberg, 2010; Fernell et al., 2010). Although the prevalence for ASDs in this study cannot be estimated, an increasing number of children with ASDs are educated in the Greek public general and special schools (KEE, 2004, 2005, 2006). The greater number of boys than girls identified in this study is in line with one of the most consistent features of autism which is the predominance among males, with approximately four males to every female (Giarelli et al., 2010; Nicholas et al., 2008; Fernell & Gillberg, 2010; Fernell et al., 2010). The majority of the children in the present study were 6–11 years old which means that the prevalence for autism is slightly higher in the primary school age because the clinical characteristics and the developmental deviations of the children with ASDs are more obvious, identifiable and stable in this age group. A similar age-specific prevalence is reported by Kielinen (2005). An interesting finding which must be paid attention is the delay in the diagnosis of autism in the Greek sample. Many children with ASDs are neither identified nor provided with suitable early interventions until they enter the demanding setting of primary school or even later, for the Asperger group (who received a diagnosis on average at 8.7 years). Delays in diagnosis may have implications for the quality of education offered to the children, for the implementation of suitable interventions in domains such as communication and language, and for the parents of the ASD children who are not offered appropriate help and support (Bryson et al., 2003; Itzchak & Zachor, 2011; Makrygianni & Reed, 2010; Matson et al., 2008). In addition, delays in diagnosis may have wider implications for families because of the hereditability of autism to siblings. For any family with a child with autism or Asperger syndrome, there is an increased possibility that other children in the family may have social, linguistic, or other cognitive problems (Howlin & Asgharian, 1999; Jo´nsdo´ttir et al., 2011). A remarkable result emerging from this study is the educational placement of ASD children. The great majority of the pupils (89%) attend general education and 63% receive special education services within general school. This trend may be the result of the implementation of the Law 3699 which gives Greek parents the right to choose between special or mainstream education for their child. In addition, the above medium socio-economic status and the educational level of the families in the present study may explain the preference of mainstreaming education for the ASD children. These families may have more resources from which to draw support and information for the advantages of mainstreaming education for ASD children. However, the research literature does not recommend any particular education setting as the most appropriate for children and students with ASD. It discusses positive outcomes across a range of settings. The type of school, the teaching methods and the curriculum content are all key aspects of an effective educational program for students with autism (Loxley & Thomas, 2001; Roberts, 2004). The study also revealed that age and sex affect the school placement and the support of the ASD pupils in the Greek educational system. Younger children (4–11 years old) seem to be more easily included in mainstream classrooms than the older children (12–14 years old). The later they were not offered extra support in the classroom or they were transferred to
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special schools. The Greek educational system seems to have difficulty to include older pupils with ASD in the mainstream school, because of the demanding curriculum content and the lack of appropriate teaching accommodations and trained personnel in secondary education. As far as sex is concerned, boys are likely to be more severely affected by autism than girls because none of the girls of the sample attended special school. Moreover, 83% of the boys of the sample were eligible for extra support in the classroom in comparison to 17% of the girls. This finding seems to contradict the trend reported in the literature which indicates that girls with autism are more often cognitively impaired and more severely affected than boys (Nicholas et al., 2008). In addition, pupils in the present sample receive after school interventions (language, occupational, music therapy, etc.) but it is not sure if these interventions produce significant gains in many of such children, when the diagnosis came late. The present study also provides evidence for the association of autism with other disabilities, such as ADHD, epilepsy, dyslexia and learning difficulties. The comorbidity of autism with ADHD and epilepsy is often reported in the literature (Arvidsson et al., 1997; Giarelli et al., 2010; Gargaro et al., 2010). From the numerous prenatal and perinatal factors reported as potential risk factors for autism in the literature (Arvidsson et al., 1997; Gabis et al., 2010; Gardener, Spiegelman, & Buka, 2009; Johnson & Marlow, 2009), five factors emerged in the present study: advanced paternal and maternal age, preterm birth, being first born versus later born and being born after assisted conception. The fact that one third of the children in the present sample were born after assisted conception must be considered together with the finding of advanced maternal and paternal age. The small number of participants in our sample together with the interplay between prenatal factors, perinatal factors and other covariates preclude us from drawing any conclusive results for possible causes of autism. However, the present study allows an in-depth examination of some aspects and characteristics of ASDs in the Greek sample. A number of limitations exist in the present study. The results concern only the specific area of Athens where the study was conducted and they are not representative of the whole Athens school population. Data on the cognitive level, language skills and social adaptability of the participants are not included and this fact makes difficult to explain the move towards mainstreaming and inclusion for the great majority of ASD pupils in the present sample. No comparisons can be made between the study group and the total population with reference to maternal and paternal age, type of conception, birth order and postnatal risk conditions.
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