The Multilingual Upbringing of children
with ASD
A Research Study on what we know and what we need to know
about ASD and Multilingualism
Emily Charlotte Bakema
S2698706MA thesis
M Taalwetenschappen (Multilingualism)
Departments of Applied Linguistics and Frisian Language and Culture Faculty of Arts, Rijksuniversiteit Groningen
Supervisors:
i
Acknowledgements
With this MA thesis, my time as a student has come to an end. I would like to thank several people who supported me during the whole process of thesis writing.
Firstly, I would like to show gratitude to my thesis supervisor Eva Juarros Daussà, who helped and supported me along the way. She never stopped having faith in me and my subject, which helped me find the motivation and drive to continue working and
improving myself. I also would like to acknowledge prof. dr. Petra Hendriks, the second reader of this thesis, for her time and effort.
Great gratitude goes out to all people who were willing to cooperate in this thesis and a special thanks goes out to the parents who gave me permission to take a closer look in their and their children’s lives. You contributed in an attempt to build a bridge between theory and practice.
I also would like to thank my parents, who never stopped believing in me. You are the best parents a daughter could wish. Ik hou van jullie.
ii
Abstract
In an attempt to fill the gap between theory and practice, research is done on the multilingual upbringing of children with an Autism Spectrum Disorder (ASD). Parents often come across incomprehension and feel discouraged when it comes to bring up their ASD child(ren) multilingually, although there is no scientific evidence that a multilingual upbringing affects ASD children negatively.
By conducting different questionnaires, organizations, professionals and parents are consulted to obtain more information about (the possibilities of) multilingual upbringing and ASD in the Netherlands and other countries.
Key elements in the multilingual upbringing of ASD children are structure, flexibility and creativity of parents and professionals. These elements together create an optimal multilingual environment for ASD children. Furthermore, it is necessary that everyone concerned with the child focuses on the (linguistic, social and cultural) background and capabilities of each individual child. An important addition to this research study is that there is always a risk of generalization: in a guide or other information flows, but also in practise when it comes to the advice of professionals.
iii Table of contents Acknowledgements i Abstract ii Introduction 1 Literature Review 2
Autism Spectrum Disorder 2
Diagnosis in the Netherlands. 4 Prevalence. 5
Autism Spectrum Disorder and Learning 5
Low functioning and high functioning ASD. 5 Brain configuration. 7
Ways of thinking. 7
Autism Spectrum Disorder and Language Development 10 Language learning and ASD. 13
The role of parents. 13
Autism Spectrum Disorder and Multilingualism 15 Professionals on ASD and multilingualism. 15 Research on ASD and multilingualism. 16
Effects of monolingual upbringing of ASD children in multilingual families. 18
Bringing up children with ASD multilingually. 19 Autism Spectrum Disorder and Special Language Education 20
Treatment programs for ASD. 21 Language interventions. 22
Concept supported communication (CsC). 23
Developmental speech and language training through music (DSLM). 25 Bilingual special education. 26
Designing multilingual programs for children with ASD. 26 Effective multilingual teaching for children with ASD. 27 Conclusion 28 Research Study 31 Introduction 31 Organizations 31 Method. 31 Participants. 32 Materials. 33 Procedures. 33
Design and analyses. 34 Results. 34
Summary. 35 Professionals 36
iv
Participants. 36 Materials. 37 Procedures. 38
Design and analyses. 38 Results. 39
Category: ASD and learning (languages). 39 Category: ASD and multilingualism. 40 Summary. 42
Experts 43
Method. 43 Participants. 43
Questionnaire for monolingual families and multilingual families. 43 In-depth questionnaires. 44
Materials. 45
Questionnaire for monolingual families. 45 Questionnaire for multilingual families. 45 In-depth questionnaires. 46
Procedures. 46
Questionnaire for monolingual families and multilingual families. 46 In-depth questionnaires. 47
Design and analyses. 47
Questionnaire for monolingual families. 47 Questionnaire for multilingual families. 47 In-depth questionnaires. 47
Results. 49
Questionnaire for monolingual families. 49 Questionnaire for multilingual families. 51 In-depth questionnaires. 52
Category: reasons for a multilingual upbringing. 53 Category: multilingual upbringing in practice. 53
Category: ASD children and multilingual upbringing. 55 Category: parental guidelines. 56
Summary. 57 Conclusion 57
Conclusion and discussion 59 References 62
Appendix A: List of Addressed Organizations Appendix B: Questionnaire for Organizations Appendix C: Questionnaire for Professionals Appendix D: Questionnaires for Experts
1
Introduction
My ambition is to eliminate a discrepancy between theory and practice.
In 2014, I wrote a short essay on ASD and multilingual special education for the course ‘the Multilingual School’ of this master. It was striking to me when I realized how little research was done on ASD and multilingualism. The subject grew on me and would not let go. My motivation was to give a voice to parents and professionals in the field and to combine their voices with former research studies.
Today, the lack of information on ASD and multilingualism causes a lack of knowledge: parents feel often discouraged to give their ASD child a multilingual upbringing. This thesis discusses the existing literature on the subject and combines it with a qualitative research study. All will come together in the conclusion and a guide for parents.
The literature provides more information on ASD and its definition and diagnosis. Furthermore, the literature review focuses on the different perspectives and research on ASD and (language) learning, multilingualism and special language education.
The research study is a qualitative study in which three target groups are consulted by using different questionnaires, varying from Google Forms-questionnaires to in-depth questionnaires. The most important research questions in this study were ‘what is done for ASD children in a multilingual upbringing?’, ‘what must be done for ASD children in a multilingual upbringing’ and ‘what are the best upbringing methods, tips and approaches for ASD children in a multilingual environment?’.
To eliminate the discrepancy and to achieve the ambition to provide parents important information, all main findings from this study, advice and tips are presented in a legible guide: ‘A Parent’s Guide to ASD and Multilingualism’. Note that this guide is not a step-by-step plan or a way to tell parents what to do: it will be a document in which they can find inspiration – and more important, each other.
2
Literature Review
What do we know about ASD and multilingualism?
In this section, literature is reviewed with focus on five major themes. These themes are: Autism Spectrum Disorder (ASD) in general, ASD and learning, ASD and language learning, ASD and multilingualism, and ASD and special language education. With the use of these themes, a literature background is given for the next parts of the current thesis.
Autism Spectrum Disorder
The term ‘autism spectrum disorder’ (ASD) is originated from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) (American Psychiatric Association (APA), 2013, p. xlii). The DSM-V is the standard manual in psychiatric diagnostics and is published by the American Psychiatric Association.
ASD is a neurodevelopmental disorder, because “the disorders typically manifest early in development, often before the child enters grade school, and are characterized by developmental deficits that produce impairments of personal, social, academic, or
occupational functioning” (APA, 2013, p. 31).
The definition of autism spectrum disorder, as given by the DSM-V:
Autism spectrum disorder is characterized by persistent deficits in social
communication and social interaction across multiple contexts, including deficits in social reciprocity, nonverbal communicative behaviors used for social
interaction, and skills in developing, maintaining, and understanding relationships (APA, 2013, p. 31).
3
spectrum disorder’ to provide a continuum in which the different symptoms of the autistic disorders cited above are represented to improve the sensitivity and specificity of the criteria for de diagnosis of ASD (APA, 2013, p. xlii).
The autism spectrum disorder includes all these previous separate disorders: early infantile autism, childhood autism, Kanner's autism, high-functioning autism, atypical autism, pervasive developmental disorder not otherwise specified, childhood
disintegrative disorder, and Asperger's disorder (APA, 2013, p. 53). Since 2013, the diagnosis ‘ASD’ is given for all separate disorders mentioned, but with further specifications according to the level of severity of symptoms (APA, 2013, p. 51-52).
According to Uta Frith in ‘Autism: a Short Introduction’, the autism spectrum has three core features: failing reciprocal social interaction, having difficulties with communication and having repetitive activities and narrow interests (Frith, 2008, p. 8-11). The DSM-V provides diagnostic criteria for ASD as well, in line with the three core features
mentioned by Uta Frith. The first two core features stated by Uta Frith cover the first part of the diagnostic criteria of the DSM-V. Individuals with ASD show deficits with social-emotional reciprocity, nonverbal communicative behaviours and developing, maintaining and understanding relationships – all in different ranges, varying from light to severe deficits (APA, 2013, p. 50).
Furthermore, people with ASD show more or less “restricted, repetitive patterns of behavior, interests, or activities”, such as repetitive motor movements, inflexibility in changing routines, having rituals and having highly fixated and intense interests (APA, 2013, p. 50). Additionally, people with ASD can show hyperactivity (oversensitivity) or hyporeactivity (insensitivity) for sensory input such as pain, temperatures, light and movements (APA, 2013, p. 50).
4
important areas of current functioning and the symptoms of ASD are not to be explained by an intellectual developmental disorder (APA, 2013, p. 50-51).
Wendy Lawson pleads in her book ‘The Passionate Mind’ for the use of the word ‘diff-ability’ instead of ‘disorder’ (Lawson, 2011, p. 17). According to Lawson, people with ASD are ‘differently abled’ and therefore not ‘disabled’, which sends a less negative message about ASD (Lawson, 2011, p. 17). In order to respect her attitude towards the terms used, but also to respect research and psychological terms, this thesis uses the abbreviation ‘ASD’, so that both ‘diff-ability’ and ‘disorder’ can be read.
Diagnosis in the Netherlands.
In the Netherlands, different steps have to be taken to diagnose a person with ASD: intake, observation, research and classification (Autisme Netwerk Groningen, 2012). According to the Autism Network of Groningen, the diagnosis is only well founded after extensive multidisciplinary research (Autisme Netwerk Groningen, 2012). The diagnosis of ASD in children is harder to make, because it is difficult to distinguish disorders with similar symptoms, such as intellectual disorders, language development disorders,
selective mutism, perceptual disorders or even pedagogical negligence (Autisme Netwerk Groningen, 2012).
First, an anamnesis has to be made to gain information about the background of the child. In order to create a complete impression, the child will be observed at school or at home. Interaction with playmates, parents and teachers will be observed as well as the use of toys (Autisme Netwerk Groningen, 2012). To support the results of the anamnesis and observations, different tests and questionnaires have to be taken and filled in to provide information about the capabilities and disabilities of the child (Autisme Netwerk Groningen, 2012). In addition to these tests, medical and psychiatric tests can be used.
5
of severity, with level one as ‘requiring support’ and level three as ‘requiring very
substantial support’ (APA, 2013, p. 52). All three levels are set up in detail. Furthermore, the diagnosis can be specified with the inclusion or exclusion of accompanying language or intellectual impairments or the association with other disorders or aspects such as environmental or medical factors (APA, 2013, p. 51).
Prevalence.
The Centers for Disease Control and Prevention (CDC) report that there is an average prevalence of 1 per cent of individuals that are diagnosed with ASD in Asia, Europe and North America (Centers for Disease Control and Prevention, June 2015).
According to Statistics Netherlands, 2.8 per cent of the Dutch children between four and twelve were diagnosed with an ASD in the period 2011-2013 (Statistics Netherlands, 2015). This data is obtained through consulting parents if they presumed that their child(ren) had an ASD or a related disorder, which leads to a higher percentage because there was not asked for an official diagnosis of an ASD (Geurts, Begeer, &
Hoekstra, 2014). Additionally, when parents were asked if their child(ren) were receiving treatment in relation to an ASD, ‘only’ 1.9 per cent remains (Geurts, Begeer, & Hoekstra, 2014).
Autism Spectrum Disorder and Learning
No individual with ASD has similar deficits or capabilities, so caution is required when making statements about the implications and effects of ASD on (language) learning. Generally, individuals with ASD are often labelled as ‘low functioning’ or ‘high functioning’.
Low functioning and high functioning ASD.
6
tests and testing procedures. Next to research of the severity of symptoms, IQ-scores are often used as an indication of low functioning (LFA) and high functioning (HFA)
individuals, where an IQ-score below 80 is classified as low functioning and above 80 as high functioning (Baker, 2009). The APA remarks that IQ-scores of children with ASD may be unstable, which makes re-assessment in different periods of time necessary (APA, 2013, p.40).
Low functioning individuals with ASD are unable to live independently and show severe disabilities. Deficits can occur in all areas of development and features of ASD. They often have limited language skills, memory impairments, can have some level of mental
retardation or suffer from epilepsy (Baker, 2009).
On the other side of the spectrum, there is roughly 46 per cent of individuals with ASD that have an average to above average intellectual ability and is thus classified as high functioning (Centers Disease Control and Prevention (CDC), 2015). Other symptoms of high functioning ASD are pedantic speech, the need for rules and routine, obsessions and lack of eye contact (Hardy, 2011). These individuals can show difficulties with social interaction, behaviour and abstract language (Hardy, 2011).
7
Brain configuration.
As Nancy Minshew, Jessica Meyer and Gerald Goldstein state: ‘the brain is configured differently according to whether or not you are an NT individual or on the autism spectrum’ (Minshew et al., 2002, as cited in Lawson, 2011, p. 107). Nancy Minshew and Diane Williams wrote a review on different brain components which lead to the
conclusion that ASD is not a disorder originated in behaviour, but in the brain (Minshew & Williams, 2007, p. 949). ASD individuals use other neural systems than NT individuals when it comes to social interaction, emotions and facial expressions (Minshew &Williams, 2007, p. 949).
High functioning individuals with ASD showed a higher activation in the Wernicke’s area of the brain (Just, Cherkassky, Keller, & Minshew, 2004, p. 1811). This area is generally linked to language comprehension. The lower activation was shown in Broca’s area, which is generally linked to language production and grammar (Just et al., 2004, p.1811). The severity of social and cognitive deficits in ASD seem to be related to the language level of an individual, but since the manifestation of ASD is unique in every individual, the relation can also be independent (Tager-Flusberg, Paul & Lord, 2005, p. 356).
As stated before, the symptoms of ASD are spread along a continuum. ASD is no longer considered as a regional brain dysfunction, but research has shown that ASD can be seen as a disorder or dysfunction of a large-scale neural systems disorder (Minshew & Williams, 2007, p. 949). This explains why some individuals with ASD show atypical or superior skills in one area, but can have underdeveloped skills at the same time.
Ways of thinking.
Wendy Lawson is a psychologist, researcher and a high functioning autistic person. She states in her book ‘The Passionate Mind’, that monotropism is a type of a brain
8
(Lawson, 2011, p. 101). Lawson states that monotropism can happen to both ASD and NT individuals, but that ASD individuals may experience a rigid monotropism in the sense that they appear to have ‘tunnel vision’ (Lawson, 2011, p. 101). Monotropism can be manifested in having difficulties with change in daily schedules and routine for example, but also in changes of perspective: shifting attention from one subject to another (Lawson, 2011, p. 103). Because ASD individuals tend to focus on one thing at a time, social
interaction and multitasking can be very difficult (Lawson, 2011, p. 104, p. 117).
When it comes to learning and (cognitive) development, both neurotypical and ASD individuals show different stages (Lawson, 2011, p. 119). ASD individuals tend to show delays, which means being delayed in starting and/or completing a stage, particularly in emotional and social domains (Lawson, 2011, p. 119).
In addition, associated issues with monotropism are literality, thinking in closed concepts, the lack of ability to generalize, timing/sequencing outside of interest,
9
One of the most famous savants is Temple Grandin, who has ASD, former Asperger’s Syndrome. Temple Grandin is often referred to as an autism activist, because she has published different articles about ASD and often speaks during ASD-related events and conferences. She has (co-)written several books about ASD and how ASD has affected her personally. Temple Grandin also spoke during a TED conference on how ‘the world needs different minds’, where she pleads for another perspective on how different perspectives and learning styles can be used to provide in all needs (“The World Needs All Kinds of Minds,” 2010). Neurologist Oliver Sacks wrote a portrait of Temple Grandin and her perspective on the world and her ‘ASD’ in his book An Anthropologist on Mars (1995).
In the book series Currents issues in Autism, the edition about learning and cognition, Temple Grandin wrote a chapter about the ways people with ASD think (Grandin, 1995). In 1995, ASD was only referred to as ‘autism’, but also disorders as Asperger’s Syndrome and Kanner’s autism are included in Grandin’s definitions and descriptions of people with ‘autism’. In compliance with the DSM, Grandin refers to different subtypes in ASD, such as high-functioning and low-functioning types, spread along a continuum (Grandin, 1995, p. 138-139). She ‘divides’ the subtypes in ‘Kanner and Asperger’ types and ‘regressive-epileptic’ types (Grandin, 1995, p. 140).
Grandin states that the majority of ASD individuals at the Kanner’s and Asperger’s side of the autism spectrum are visual thinkers (Grandin, 1995, p. 141). Fourteen years later, she published a review article about three types of thinkers in ASD (Grandin, 2009). There she revised the former statement about the visual thinking and ASD: ‘From both books and interviews, I have concluded that there are three principal types of specialist thinking’ (Grandin, 2009, p. 1439). The three types of thinking are visual thinkers, pattern thinkers and word-fact thinkers (Grandin, 2009, p. 1439).
Visual thinkers think in photo-realistic pictures. Temple Grandin (2009) refers to herself as a visual thinker in the following:
10
When I design equipment for the cattle industry, I can test run it in my imagination similar to a virtual reality computer program. All my thinking is associative and not linear. To form concepts, I sort pictures into categories similar to computer files. To form the concept of orange, I see many different orange objects, such as oranges, pumpkins, orange juice and marmalade (p. 1437).
Pattern thinkers see patterns and relationships between numbers, and are thus good with math and music (Grandin, 2009, p. 1439). They also appear to spot irregularities in
patterns quickly and are thus capable of doing jobs as programmer, composer or scientific researcher (Grandin & Panek, 2013, p. 114, 162). One of the interviews she had done to find prove for pattern thinkers was with a man who learned languages by looking for the patterns, such as the first letters of words in certain categories (Grandin & Panek, 2013, p. 116).
Word-fact thinkers appear to have a large memory for verbal facts, such as timetables, agenda’s and product codes (Grandin, 2009, p. 1439). According to Grandin, they are typical writers, analysts and teachers (Grandin & Pank, 2013, p. 162).
Both Wendy Lawson and Temple Grandin state that ASD should be seen as an alternative way of learning and experiencing the world, and not as a dysfunction or disorder (Lawson, 2011, p. 168; Grandin & Panek, 2013 p. 142). People should not lose sight of the strengths of ASD individuals by focusing only on the deficits (Grandin & Panek, 2013, p. 142).
Autism Spectrum Disorder and Language Development
Language delays are often an indicator for parents that something is not ‘right’ with their child, mostly around the age of one to two years (Tager-Flusberg et al., 2005, p. 335, 336). Therefore, language deficits in young children are frequently associated with ASD,
11
Longitudinal research in 2004 indicated that the children who are referred for possible ASD at early ages and do not use words to speak is less than 20 per cent (Tager-Flusberg et al., 2005, p. 342). With the use of different communication interventions, speaking therapies, social engagement and nonverbal communication, there is a chance that individuals with ASD can acquire (some) functional language skills at an older age (Autism Speaks, 2013; Tager-Flusberg et al., 2005, p. 342). Sarah de Weerdt states in her web article that roughly 25 percent of grown up individuals with ASD are nonverbal: they speak no or a few words (De Weerdt, 2013). These numbers are also mentioned by Autism Speaks, where they stated that 25 percent of individuals with ASD are nonverbal, in the way that they do not communicate with others through speech (Autism Speaks, 2009). In the research mentioned above, small populations with various degrees in (language) background and age were studied.
Ellen Notbohm and Veronica Zysk state in their book about teaching and raising children with ASD (2009; 2013), that forty percent of children with ASD does not speak and that the majority of those children will not use functional language (Notbohm & Zysk, 2013, p. 11). Approximately half of all children with ASD are nonverbal by the age of 10 or middle childhood (Autism Speaks, 2008; Tager-Flusberg, Paul & Lord, 2005, p. 342). Many of these children have low nonverbal IQ-scores (Tager-Flusberg et al., 2005, p. 342). Helen Tager-Flusberg, Rhea Paul and Catherine Lord wrote a chapter about
language an communication in the autism spectrum in the Handbook of Autism and Pervasive Developmental Disorders.
12
terms, gesture production acting as a ‘bridge’ between word comprehension and word production and the broad pattern of acquisition across word categories and word forms’ were similar to what has been found in NT children (Charman, et al., 2003, p. 214).
Because of the variation in language acquisition and language levels in children with ASD, Helen Tager-Flusberg et al. made a distinction between different ‘language groups’ in individuals with ASD: individuals with normal linguistic abilities, individuals with impaired language abilities that can also be found in specific language impairment-individuals and impairment-individuals that never acquire speech for different reasons (Tager-Flusberg et al., 2005, p. 336). The causes of staying mute are still to be investigated (Tager-Flusberg et al., 2005, p. 336). The last language group is decreasing in number due to the increase of early language interventions (Goldstein, 2002, p. 393).
One reason for variation in language development in ASD is the difference in social and linguistic environments, in which parents and teachers are an important key in creating the environment (Tager-Flusberg et al., 2005, p. 335). This is combined with initial, cognitive deficits that come with ASD in an individual.
Most individuals with ASD have delays in onset and development of speech compared to NT children (Tager-Flusberg et al., 2005, p. 341). According to this article, there is little information on language development in young children with ASD because the diagnosis of ASD often takes place at the age of three or four (p. 341). Tager-Flusberg et al. mention different retrospective research on the language development of young children with a later diagnosis of ASD which leads to the conclusion that children with ASD show delays in the development of social and other communicative skills (Tager-Flusberg et al., 2005, p. 341-342).
In 2004, Catherine Lord, Cory Shulman and Pamela DiLavore conducted a longitudinal research on a frequently occurring phenomenon in the language development of around 25 percent of children with ASD. Parents, professionals and
13
p. 936). By doing detailed interviews with parents of children with ASD, the loss of
different communication skills was investigated by these children at the ages of two, three and five (Lord et al., 2004, p. 938). In this research, four categories of communication loss are reported: word loss, fluctuating word loss, loss of vocalization and no word loss. This phenomenon seems to occur only in individuals with ASD, but is not universal for every individual with ASD (Lord et al., 2004, p. 946). After the loss of (several) words, most children at the age of five regained and used stable words after four to five months, which is at the same age as ASD children without word loss (Lord et al., 2004, p. 946).
The rate of spontaneous communication in individuals with ASD is often very low (Tager-Flusberg et al., 2005, p. 351). In different articles mentioned by Tager-Flusberg et al. (2005, p. 351), children with ASD show less frequent and less varied speech than control groups without ASD. As Tager-Flusberg et al. state: ‘Although basic intention to communicate often exists, the autistic person has impaired skill in participating in communicative activities involving joint reference or shared topics’ (2005, p. 354).
Language learning and ASD.
Monotropism can affect learning or interpreting languages, in the sense that language is often taken literally by children who did not have the chance to learn over time (Lawson, 2011, p. 103). When testing 178 high functioning ASD individuals and control individuals, deficits in high order language abilities, such as detecting or making of story themes, metaphors, or idioms, were revealed (Minshew & Williams, 2007, p. 949). These deficits come alongside difficulties with social interaction and communication, as mentioned in the paragraphs above.
The role of parents.
In 2008, the article of Michael Siller and Marian Sigman was published, where they evaluated the patterns of longitudinal change in the language abilities of children with ASD. They found a link between parental behaviour and improvements in language
14
acquisition. The rate of language development by the 28 subjects with ASD was predicted by their own responsiveness to others’ bids for joint attention and the responsiveness of parents to children’s attention and activity during play (Siller & Sigman, 2008,p. 1700). The so-called predictors could not be explained by initial variation in developmental characteristics such as IQ, mental age and language abilities (Siller & Sigman, 2008, p. 1700).
In 2010, Andrea McDuffie and Paul Yoder found also evidence for the conclusion of Siller and Sigman’s study from 2008: parent use of synchronous and undemanding talking during the preschool years predicted spoken language outcomes 10 years later for children with autism (McDuffie & Yoder, 2010, p. 13-14). Furthermore, they state that parent verbal utterances are critical for later spoken language development in children with ASD (McDuffie & Yoder, 2010, p. 14). Strategies such as following into and maintaining the child’s current focus of attention can cause benefits for the language development (McDuffie & Yoder, 2010, p. 16).
The role of parental behaviour in language development of children with ASD was also studied by Jonathan Green with a team of researchers in 2010 (Green, Charman,
McConachie, Aldred, Slonims, Howlin, Le Couteur, Leadbitter, Hudry, Byford, Barrett, Temple, Macdonals, Pickels, 2010). They compared PACT (Preschool Autism
Communication Trial) interventions with ‘normal’ treatment that are given by therapists with parents and child together. A PACT intervention is meant to increase parental sensitivity and responsiveness to child communication, while reducing mistimed parental responses by guiding the parents using video-feedback methods (Green et al., 2010, p. 2153). The interventions also used different strategies to further develop the child’s communication such as repetitive language and pauses (Green et al., 2010, p. 2153).
15
and child communication initiations (Green et al., 2010, p. 2158). The parent-training approach showed positive benefits for later social and communication functioning in children with ASD (Green et al., 2010, p. 2158).
The outcomes of above mentioned articles do not have to be universally true, because the symptoms and characteristics of ASD manifest themselves in a continuum, across a spectrum. It seems that every individual with ASD has its own capabilities and deficits: there seems to be a variation in underlying mechanisms that causes difficulties in different areas of cognition and social behaviour.
Autism Spectrum Disorder and Multilingualism
There is a discrepancy between professionals and literature when it comes to advising and supporting parents and children with ASD in a multilingual environment.
Professionals on ASD and multilingualism.
Despite the little research that is done on ASD and multilingualism, professionals and educators often advise against multilingual upbringing of children with ASD, or do not support families that want to bring up their children in two or more languages (Park, 2014, p. 122; Hambly & Fombonne, 2012; Blumenthal, 2009, p. 15). Additionally, research of Thordardottir (2002) and Steinberg, Bain, Li, Delgado & Ruperto (2003) has indicated that parents of children with down syndrome and deaf children had wished for more supportive professionals when it came to multilingual upbringing (Blumenthal, 2009, p. 16). In cases like these, professionals often advise parents to speak one language, even in cases where the recommended, dominant language in the region or country is not the mother tongue of the parents (Park, 2014, p. 122).
The reason for the advice against multilingualism is the conclusion of professionals and parents that using more than one language with an ASD child may cause confusion or delay language development, (also in high functioning ASD children) since the
16
(Park, 2014, p. 123). Tamar Kremer-Sadlik suggested in 2005 that the threshold and cognitive development interdependence hypotheses by James Cummins may cause the recommendations and advice given by professionals. Cummins stated in 1979 that by an impairment of first language skills, this will manifest in the second language as well (Cummins, 1979, p. 222). An ASD child with language delay is, according to this hypothesis, unlikely to succeed in two languages.
Elizabeth Kay-Raining Bird, Erin Lamond and Jeanette Holden (2012) carried out a survey in which parents of ASD children had to report, among other things, any concerns that they had in bringing up their ASD child bilingually. Their concerns were that they had ‘no access to professional help’, no access to services’ and ‘I am afraid that my child will get confused by two languages’ (Kay-Raining Bird, Lamond, & Holden, 2012, p. 57). The conclusion of Kay-Raining Bird et al. is that there is a lack of information for both parents and professionals (Kay-Raining Bird, Lamond, & Holden, 2012, p. 62).
Research on ASD and multilingualism.
There is a discrepancy in what professionals advice and what literature states about ASD and multilingualism. Although there are not many studies that focus on multilingual or bilingual individuals with ASD, there are a few studies that compare bilingual children with ASD to monolingual peers, with each study focusing on another part of language development.
17
is that children with ASD have the potential to function successfully as bilinguals (Petersen, Marinova-Todd, & Mirenda, 2012, p. 11).
In the same year, Catherine Hambly and Eric Fombonne studied the impact of multilingual environments on the socio-communicative levels in children with ASD. Hambly and Fombonne used 75 children from Canada in the age range of 36-78 months (Hambly & Fombonne, 2012, p. 1343). The participants were divided into groups, monolingual versus bilingual, and the bilingual group was then supgrouped into dual-language exposure before or after 12 months of age (Hambly & Fombonne, 2012, p.1344). Different interviews, tests to measure the serveness of ASD symptoms, language diaries, language tests and behaviour tests were taken to study the differences between
monolingual and bilingual ASD children (Hambly & Fombonne, 2012, p.1347). The results of the tests showed that bilingual ASD children did not show additional delays in the language development in comparison with monolingual ASD children (Hambly & Fombonne, 2012, p.1348). Hambly and Fombonne also suggest that ‘ASD children are capable of similar language achievements regardless of whether their environment is monolingual or bilingual’ (Hambly & Fombonne, 2012, p.1348).
Jennifer Kaori Ohashi conducted, along with many other researchers, a study in which they compared monolingual and bilingual ASD children for the severity of autism-related communication impairment, the age of first words, the age of first phrases,
receptive language scores, expressive language scores, and functional communication scores (Ohashi et al., 2012, p. 890). There were 20 bilingual children ranging from 31.5 to 49.5 months old and 40 monolingual children, so each bilingual child was matched with two bilingual children (Ohashi et al, 2012, p. 892). The outcome of this research suggested that bilingual families can maintain their bilingual environment and bring up their ASD child(ren) bilingually (Ohasi et al, 2012, p. 895-896).
18
with ASD, because the learning environments, cultural preferences and family dynamics should be taken into account (Ohasi et al., 2012, p. 896).
According to Soyoung Park (2014), ASD children are capable of becoming bilingual: concerns that using two languages is too confusing for ASD children are unfounded (Park, 2014, p. 126). In the study of Valicenti-McDermott and other
researchers (2012), 40 bilingual ASD children even showed a higher frequency in cooing than their 40 monolingual peers. The bilingual ASD children also used more gestures, such as pointing and leading to desire objects (Valicenti-McDermott et al., 2012, p. 947). When it came to expressive and receptive language, there were no differences between the monolingual and bilingual group, which confirms the outcomes of previous research (Valicenti-McDermott et al., 2012, p. 947).
At this time, there is no scientific evidence that children with ASD experience negative effects when being brought up learning multiple languages: there is no
significant irrecoverable language delay or aggravation of ASD symptoms (Döpke, 2006).
Effects of monolingual upbringing of ASD children in multilingual families.
Tamar Kremer-Sadlik conducted research in 2005, in which the effects of a monolingual environment for an ASD child within a bilingual family was studied. All participants, parents of ASD children, were advised by professionals to speak English to their ASD child, regardless of their proficiency (Kremer-Sadlik, 2005, p. 1229). ASD children were often excluded from family interaction and individual interaction with the parents, due to the low English proficiency of (one of) the parents (Kremer-Sadlik, 2005, p. 1230, 1232). As a result, the ASD children felt excluded from the other language community and the family when they spoke another language than the advised English language (school language) (Kremer-Sadlik, 2005, p. 1231). In addition, Soyoung Park states that ‘the choice to not raise a child with ASD bilingually may deny that child the benefits that come with being bilingual’ (Park, 2014, p. 125).
19
and that in bilingual families the parents should focus on letting their ASD child become a member of their community by speaking the home language as well as the ‘school’
language (Kremer-Sadlik, 2005, p. 1232). Wharton et al. (cited in Park, 2014) state that affective interactions are highly important for ASD children because ‘it helps them make emotionally strong memories that can be drawn upon in future play’ (as cited in Park, 2014, p. 125). When the native language is not spoken, parents can have problems with connecting emotionally to their (ASD) children, which can do harm to the language development and social growth of the ASD children (Wharton et al., 2000 as cited in Park, 2014, p. 125). The emotional connection with parents is thus very important for ASD children to improve interactions.
Bringing up children with ASD multilingually.
Mirjam Blumenthal, speech-language therapist and psychologist, wrote a book (2009) about the bilingual upbringing of children with impairments in hearing or in language processing. In 2013, she wrote an article for Van Horen Zeggen about multilingualism. She stated: there is no standard advice for bringing up children with ASD multilingually: it is custom work, because there is a lot of detailed information needed before giving justified advice (Blumenthal, 2013, p. 17).
20
simply because they will always be there and it can be disadvantageous to eliminate one of the languages (Blumenthal, 2009, p. 73).
It is important to choose in which situation which language is spoke by whom (Blumenthal, 2009, p. 96). Especially for children with ASD, that often need clarity and structure. There is no need for one strict policy when it comes to languages in a
multilingual upbringing. Mirjam Blumenthal stated that the use of language should always be a natural and automatic process (Blumenthal, 2009, p. 101). There is no specific need for a policy such as OPOL (one parent, one language), ML@H (minority language at home), ‘one situation, one language’ or ‘first sentence counts’ (whomever starts the conversation determines the language) (Blumenthal, 2009, p. 100-101). In practise, it is hard to hold on to one policy. Blumenthal advises to become less forced in using one policy, because it can lead to less fluency and an artificial use of language(s) (Blumenthal, 2009, p. 101).
A multilingual upbringing can be considered successful if the child does not experience negative effects of being brought up with different languages (Blumenthal, 2009, p. 71). A multilingual upbringing can even be beneficial for children with ASD, in a way that they can express themselves in more situations (Blumenthal, 2009, p. 71). As an addition, the acquisition of multiple languages can help generalize new-learned language skills and communication skills (Goldstein, 2002, p. 387; Blumenthal, 2009, p. 74).
Autism Spectrum Disorder and Special Language Education
According to the Dutch government, children with ASD can attend regular schools (Ministerie van Algemene Zaken, 2014). The school has the responsibility to take care of their students and has to offer assistence and support when required. If the disabilites of the child are too severe and the child cannot participate in class, special education can be the consequence (Ministerie van Algemene Zaken, 2014).
In the following paragraphs, different treatments and interventions will be
21
Lastly, bilingual special education and the multilingual upbringing will be adressed. Interventions and methods mentioned hereafter do not have to be applicable to and show effects for all individuals with ASD.
Treatment programs for ASD.
There are numerous treatments, methods and procedures for supporting children with ASD. The main goal of these programs is to reduce the severity of the symptoms of ASD, but often include a more broader area of support in communication, social and sensory skills. Elisabeth Hollister Sandberg and Becky Spritz wrote A Brief Guide to Autism Treatments in 2012. In the book, they discuss 15 different treatments that can help to manage and reduce the symptoms of ASD. The treatments vary from dietary supplements, diets, oxygen therapies, the Miller Method, the TEACCH program and sensory integration therapy (Sandberg & Spritz, 2012). The aim of their book is to provide parents with
information about possible treatments, and to provide them with a sufficient foundation to make a choice between treatments (Sandberg & Spritz, 2012, p. 13).
In 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, Ellen Notbohm and Veronica Zysk give advice to parents and teachers of children with ASD. Different strategies and tips are provided by themselves, other professionals, special education teachers and other parents of children with ASD. The ideas cover areas as sensory information processing, communication, language, behaviour and social skills. Their book is not in accordance with specific treatments or programs, but is a practical handbook based on experience (Notbohm & Zysk, 2013).
Both Sandberg and Spritz as Nothbohm and Zysk show that specific treatments for children with ASD do not always have to be sufficient or beneficial. According to Lee Wilkinson, ‘the most effective treatment is a comprehensive and intensive program consisting of educational interventions, developmental therapies, and behavior
22
Language interventions.
Howard Goldstein (2002) focused on the effects of different procedures and interventions to improve language and social skills of individuals with ASD by reviewing 60 different studies. He studied sign language incorporation, discrete-trial training, and milieu
teaching procedures to find effects for language skills of individuals with ASD. According to Goldstein, the use of speech and signs (such as pictures and symbols) altogether seems to be a beneficial strategy for teaching and learning receptive and expressive vocabulary (Goldstein, 2002, p. 385).
The main conclusion in the review article of Dennis Delprato from 2001 was that normalized language training was more effective for individuals with ASD than discrete-trail or: direct instruction language training (Delprato, 2001, p. 323). This was also
concluded by Howard Goldstein (2002), who reviewed 12 different experiments involving discrete-trail language training. Normalized language training focuses on the initiation of the training by the child, indirect instruction episodes where teacher and child learn in a playful and more everyday setting: that is in different places and positions with a variety of stimuli (Delprato, 2001, p. 316). Discrete-trail language training is more focused on the pace and initiation of the teacher, is highly structured and uses direct instruction while seated (Delprato, 2001, p. 316).
The subjects in different studies showed a higher response rate, successful acquisition and a positive effect on their language development when normalized language training was given (Delprato, 2001, p. 324). This way of language training did not improve the everyday functioning of children with ASD: a more natural strategy is advised to improve language development of individuals with ASD, such as normalized language training (Goldstein, 2002, p. 387). On the contrary, discrete language training is needed to teach children with ASD the things that they cannot learn on their own, such as generalization of new-learned language skills (Goldstein, 2002, p. 387).
23
interests in their natural environments to embed teaching opportunities’ (Goldstein, 2002, p. 387). To enhance communication initiations by children with ASD, the use of milieu language training has appeared to be successful (Goldstein, 2002, p. 388). As a conclusion, Goldstein states that there is no evidence that normalized or milieu language training is more effective than discrete language training – both types of teaching are needed (Goldstein, 2002, p. 388).
Concept supported communication (CsC).
Concept supported Communication (CsC) is the free translation of the Dutch method of ‘conceptondersteunende communicatie’, developed by Wilma Denteneer-van der Pasch and Roger Verpoorten in 2007. The aim of CsC is to clarify concepts of communication for individuals with ASD, so that they can assign an adequate meaning to the world in which they live (Denteneer-van der Pasch & Verpoorten, 2007, p. ii). CsC can be used for every individual with ASD, regardless of the cognitive skills, level of language and speech, age and other disabilities (Denteneer-van der Pasch & Verpoorten, 2007, p. iii).
Neurotypical individuals are more flexible when it comes to connecting concepts with context. Denteneer-van der Pasch and Verpoorten clarify this by the example of ‘having lunch in a restaurant’. Where NT-individuals know that they do not have to make themselves lunch when they are having lunch in a restaurant, ASD individuals do not necessary make that connection: NT-individuals understand the concept behind ‘having lunch’ not only in one way, but flexible within its context (Denteneer-van der Pasch & Verpoorten, 2007, p. 40). This flexible connection does not have to come naturally for ASD individuals, because it can take more time, effort and thinking capacity to combine information and memories. The result of the more slowly process is that there is a higher risk of disturbance of the process, the meaning of things is being processed with a delay, partially or not even at all (Denteneer-van der Pasch & Verpoorten, 2007, p. 40).
24
seven steps to practise CsC properly. The first six steps are preliminary. Step one is mapping the functioning profile, the sensory profile and the communicative profile of an individual with ASD (Denteneer-van der Pasch & Verpoorten, 2007, p. 47). As a result, support can be custom made with respect to every individual. Step two is to decide which concept needs to be clarified, why and which problems can occur when clarifying
(Denteneer-van der Pasch & Verpoorten, 2007, p. 48). The third step is to analyse the concept by asking ‘what’, ‘who(m)’, ‘when’, ‘why’, ‘how’, ‘until when’ and ‘when again’.
Step four is to prepare the explanation of the concept. Denteneer-van der Pasch and Verpoorten provide a table in which every answer to the questions in step three can be described. Concepts can be explained by using pictures, words or objects, and by using different learning strategies as matching, puzzling and working together (Denteneer-van der Pasch & Verpoorten, 2007, p. 50). The fifth step is to create an appropriate
environment in which a concept is explained. In this environment, the roles of different mentors and supervisors need to be clear: the right person, someone who is well known, should give the explanation (Denteneer-van der Pasch & Verpoorten, 2007, p. 51).
The sixth step is the last step before explaining a concept to an individual. In this step, an analysis should be made to ensure that someone has understood the meaning of the concept (Denteneer-van der Pasch & Verpoorten, 2007, p. 52). After the step-by-step explanation of a concept, the whole process has to be evaluated (step seven). Included in this evaluation is also the observation of the individual’s behaviour related to the
explained concept: does he or she show fewer behaviour problems when it comes to activities around the explained concept? Was CsC sufficient enough? To what extent is he or she independent in relation to the concept?
Several small scale studies showed that the use of CsC led to fewer behavioural problems in individuals with ASD (Denteneer-van der Pasch & Verpoorten, 2007, p. 62). As an addition, the independence of the subjects had grown during the use of CsC
25
Developmental speech and language training through music (DSLM).
Hayoung Lim wrote ‘Developmental Speech-Language Training through Music for Children with Autism Spectrum Disorders’ in 2012. Music and language use similar mechanisms for learning, sound category perception and rhythmic predictability (Lim, 2012, p. 55). By individuals that show deficits in speech or language, music can be beneficial. Children with ASD show often a distinct sensitivity and attention to music (Lim, 2012, p. 63). They are often affected by the sound patterns in music, which is also a primary mechanism in speech and language (Lim, 2012, p. 64). Hayoung Lim mentioned different studies that showed effects of music in language and speech. Some children showed fewer behaviours such as repetitive motor movements, more imitation of signs and speech, and an increased attention (Lim, 2012, p. 74-75).
Furthermore, Hayoung Lilm writes about a method for speech and language training by using music:
Developmental speech and language training through music (DSLM) utilizes musical elements such as pitch, melody, rhythm, tempo, harmony, form, timbre, dynamics, and instruments in speech and language training for children with language impairments (Lim, 2012, p. 81).
The goal of DSLM is to enhance and facilitate speech and language development, and to overcome communication deficits (Lim, 2012, p. 81). There are different requirements when it comes to effective DSLM songs. Target word(s) should be placed at the end of each song lyric line, the structure of the songs should be simple, the tempo should be moderate and the songs should differ distinctly from one another (Lim, 2012, p. 82).
26
DSLM songs can also be used to ask questions and giving answers (Lim, 2012, p. 150). DSLM is often used in music therapy sessions.
Bilingual special education.
Generally, the term ‘bilingual special education’ is defined as the use of the student’s home language and culture, along with a school language ‘in an individually designed program of instruction for students who have been recommended for special education classrooms’ (Rodriguez & Carrasquillo, 1997, p. 99). It is a combination between bilingual education and special education, which requires expertise of teachers in both fields.
Designing multilingual programs for children with ASD.
In 1991, Leonard Baca and Hermes Cervantes wrote an article for ERIC Digests about developing bilingual special education. They combined aspects of special education with features of bilingual education. Three factors need to be weighed for each individual to determine the nature of instruction: the degree of disability, the level of language proficiency in both languages and the intellectual capacity (Baca & Cervantes, 1991).
Creativity seems to be the most important element for succesful bilingual special education, next to the capabilties of the child. It is important that the expectations of the teacher is understood by the child: a child has to understand the instructions (Baca & Cervantes, 1991). Baca and Cervantes advise to use the child’s stronger language as the instructional language, because ‘language is the primary conveyor of instruction’ (Baca & Cervantes, 1991). As an illustration, some children with ASD can be considered as visual thinkers, in a way that they can visualize better than hear (Döpke, 2006). For those children it can be helpful to use visual strategies to introduce languages and to build bridges between them (Döpke, 2006).
In general, researchers emphasize that professionals and parents should look at the importance of the specific needs and abilities of a child with ASD: ‘at each local level with each individual student in mind’(Baca & Cervantes, 1991), with the aid of an
27
Effective multingual teaching for children with ASD.
Diane Rodriguez and Angela Carrasquillo wrote an article about effective teaching in bilingual special education (1997). The article was based on Diane Rodriquez’s study about the required teaching and professional competencies of teachers in bilingual special
education: language proficiency, assessment, culture, planning and delivery of instruction, and professionalism (Rodriguez & Carrasquillo, 1997, p. 99). These competencies are also part of the teacher preparation program, which helps to improve and create qualified teachers (Rodriguez & Carrasquillo, 1997, p. 100).
Firstly, language proficiency and knowledge of bilingualism are keys into understanding bilingual (or multilingual) children. Teachers should be aware of the differences between languages and the process of becoming bilingual whilst being
proficient in both languages (Rodriguez & Carrasquillo, 1997, p. 100). This last statement was made by Rodriguez and Carrasquillo in the context of an English-Spanish
environment, which is common in the United States.
Secondly, assessment techniques are very important because it is a way to improve instructions and the educational program by monitoring students (Rodriguez &
Carrasquillo, 1997, p. 101). Rodriguez and Carrasquillo provide different competencies for teachers in bilingual special education related to assessment, such as the knowledge of monitoring the progress of students and knowledge of the further application of results in a learning environment.
As a third, knowledge of the student’s culture is necessary in order to teach
effectively. As Rodriguez and Carrasquillo state, ‘students from diverse backgrounds come to school with a wide assortment of experiences and understanding’ (Rodriguez &
Carrasquillo, 1997, p. 103). A teacher should take the cultural background of every student into account when teaching, next to stimulating cross cultural activities, environments and recognizing (cultural) conflicts and opportunities (Rodriguez & Carrasquillo, 1997, p. 103).
28
and cognitive skills; and provide opportunities and experiences to enable students to succeed in school’, according to Rodriguez and Carrasquillo (1997, p. 104). The cultural and educational background of the students should be the starting point of a curriculum, equal with knowledge about teaching and learning techniques.
Lastly, the professionalism of teachers is the base for effective teaching.
Professionalism is defined by Rodriguez and Carrasquillo as follows: ‘[professionalism] reflect their expertise, knowledge base, values, and attitudes; and call for self-regulation, professional autonomy, expert knowledge, and guidance for professional practice’
(Rodriguez & Carrasquillo, 1997, p. 106). Teachers must develop themselves continuously, engage and become involved in the field of bilingual special education in order to be qualified as a bilingual special education teacher.
Conclusion
In this literature review, ASD is referred to as a neurodevelopmental disorder with a variety of characteristics, diagnostic criteria and effects. Because of the variation in deficits and capabilities, no person with ASD is the same: they fall in a continuum. ASD is
referred to as a spectrum, while in general individuals with ASD are classified into low functioning or high functioning. In the Netherlands, the diagnosis of ASD consists of different steps: intake, observation, research and classification. The diagnosis of ASD is always accompanied by further specifications of the disorder in an individual.
Both Wendy Lawson and Temple Grandin are researchers and individuals with ASD. They propose to see ASD as an alternative way of learning and experiencing the world instead of a disorder. Lawson defines ASD as a different learning style and uses the cognitive theory ‘SAACA’ as a lens to look at ASD. Grandin states that there are three types of thinkers in the autism spectrum: visual thinkers, pattern thinkers and word-fact thinkers.
29
language teaching can influence the language use of children with ASD. By using these different language interventions, custom-made trials and procedures can be developed to enhance the language development of individuals with ASD.
Previous research has shown that high functioning children with ASD are capable of learning two languages without (further) language delays in comparison to monolingual ASD children. In the study of Valicenti-McDermott et al. (2012), bilingual ASD children even showed higher frequency scores on some communicative behaviours than their monolingual peers. The outcomes of the different studies are inconsistent compared to the advice given often by professionals and educators in the field of ASD and bilingual
upbringing. This may cause a feeling of exclusion from the community, which Tamar Kremer-Sadlik’s study showed in 2005.
When it comes to multilingual upbringing, it is important to look at the
capabilities of an individual. Families are often already multilingual before the diagnosis of ASD is made. Especially for children with ASD, it is essential to make clear choices about languages in the family, when at the same time keeping the natural process of speaking languages in mind. In most cases, a multilingual upbringing is beneficial for children with ASD. Multilingual children with ASD can express themselves in more situations: they have more language systems to rely on. Furthermore, the acquisition of multiple languages can help generalize language and improve communication skills.
30
Because of the severity of language and communication deficits shown in low functioning ASD individuals it is questionable if they should be brought up multilingually, even in cases where it would be more natural to do so in their environment. Since every person with ASD is unique in its qualities and possibilities, professionals and care-takers should look at each case individually as basis for treatments and language policies for the future. This thesis is mainly focused on ASD individuals that show capabilities to be brought up in a multilingual environment.
The next section of this thesis is a research study which covers information and
31
Research Study
What do we need to know about ASD and multilingualism?
Introduction
In this research study, different perspectives and methods for multilingual upbringing are presented to answer the research question: what is done for children with ASD and multilingual upbringing?. Three types of participants are consulted: Dutch organizations, professionals and (experience) experts. The distinction of professional and expert is made to approach both target groups in an equal way. Parents of multilingual children with ASD are considered as experience experts, whereas professionals are connected to an organization, company or research project. By conducting different questionnaires and several interviews with parents and professionals, the situation of children with ASD and multilingual upbringing is assessed.
Furthermore, the results of the different questionnaires and interviews will be presented. All three sections combined will provide information that will be used to answer the research question, follow-up questions and to create guidelines for multilingual families with children with ASD.
Organizations
In this section, the questionnaires for Dutch organizations related to health, ASD and/or multilingualism and its results are presented.
Method.
32
A questionnaire is thus created for Dutch health centres and organizations related to ASD. It is used to acquire an overview of the situation and need for information about multilingualism and ASD in the Netherlands.
Participants.
In total, 25 Dutch organizations were summoned to fill in the questionnaire. Of those 25 organizations, 17 are related to autism spectrum disorders. The remaining 8 organizations are related to the (multilingual) upbringing of children (including major Dutch health centres). Appendix A provides a list of all the addressed organizations.
The different organizations were approached by e-mail or phone, depending on the information found on their websites. 4 organizations were not able to cooperate for two reasons: not having time to cooperate and not covering the right target group. A month after the first invitation, a reminder was sent to the remaining organizations. In
conclusion, 13 organizations did not respond at all and a number of 8 organizations filled in the questionnaire, which is a response rate of 32%. Table 1 presents an overview of the participating organizations.
Table 1
Overview of the Participating Organizations and Their Specialty Name of the organization Specialty
Altrecht Jeugd Mental health care for children
Autisme Academie ASD and communication
Autisme Steunpunt ASD and education
Gezinsbegeleiding Autisme ASD and family counselling
GGD Public health care
33
Nederlandse Vereniging voor Autisme Friesland
ASD
Materials.
The questionnaire was created by using ‘Google Forms’ and can be found in Appendix B. The questionnaire consisted of 12 questions in total: 7 multiple-choice questions and 5 open questions. The reason for using multiple-choice questions was to make the
questionnaire more participable. 5 multiple-choice questions were to be answered with either ‘yes’ or ‘no’, and 1 multiple-choice question was to be answered with ‘yes, often’, ‘yes, sometimes’ or ‘no’. The remaining multiple-choice question was meant to select the organization on whose behalf the questionnaire was filled in. Half of the questions was obligatory, in order to obtain sufficient data.
One open question was meant to give the participants space for commenting on the questionnaire and the research topic. Another open question was to ask the participants for contact details of a professional of ASD and multilingualism in their organization. The remaining open questions were meant to give a more detailed answer on different
questions, for example on which elements are the most important when creating guidelines for parents.
Procedures.
The organizations were all approached by phone or e-mail. After a month, a reminder was sent to the organizations that did not respond to the first invitation. When an
organization agreed to participate, an online link to the questionnaire was sent. The questionnaire had to be filled in online. It would have taken 10 to 15 minutes to complete the questionnaire.
34
Design and analyses.
The questionnaire is analysed by comparing the answers to the multiple-choice questions between the organizations. The open questions about the need for guidelines for parents and how information on ASD and multilingualism is given by organizations were analysed by linking them to the answers on the multiple-choice questions. Due to the small
amount of participating organizations, the open question about the most important elements of guidelines for parents is not coded, but is presented by creating a list of answers.
Results.
Seven out of 8 organizations stated that they can offer information about ASD and multilingual upbringing combined. One of the seven organizations has never given that information before, other organizations provide information when needed or in contact with schools. In general, the seven organizations have an advisory role when it comes to ASD and multilingualism.
Five organizations answered ‘yes, sometimes’ to the question on how often parents ask them for information on multilingualism and ASD. The remaining 3 organizations answered that they never get questions about this topic. Five out of 8 organizations share the opinion that there is a need for guidelines for parents on bringing up children with ASD multilingually. ‘Gezinsbegeleiding Autisme’ (Family Counselling Autism), the ‘Nederlandse Vereniging voor Autisme’ (Dutch Society of Autism) and the ‘GGD’ (Public health service) answered with ‘no’ on this question.
35
The answers given on the question on what would be the most important elements of parental guidelines are that
every individual with ASD should be treated differently, especially when creating (generalizing) guidelines;
the conditions of clarity and predictability should be covered: they are key factors in bringing up children with ASD;
for helpful guidelines, the linguistic situation and expectations of a child should be monitored and mapped;
there should be a focus on the mother tongue of the mother, because the role of a mother is essential for bonding and a social-emotional start; there is not one, perfect method that applies to all children;
the explanations given should be as simple, clear and concrete as possible; parents should be involved in creating the guidelines;
the linguistic and cultural background of parents and family should be respected.
Summary.
With the aid of a questionnaire, eight Dutch organizations were consulted to create an overview of the situation and need for information about multilingualism and ASD in the Netherlands. There is a need for more information or advice when it comes to ASD and multilingualism, although the questions and problems do not arise very often.
36
Professionals
In this second section, different professionals are consulted to collect perspectives, advices and thoughts about ASD in combination with a multilingual upbringing. All professionals are connected to an organization, company or research in the field of ASD and
multilingualism.
By conducting a questionnaire, the situation of children with ASD and
multilingual upbringing is assessed in the perspective of professionals. Moreover, the results of the questionnaires will be presented. All three sections combined will provide information that will be used to create guidelines for multilingual families with children with ASD.
Method.
For this section, professionals in- and outside of the Netherlands are consulted by a questionnaire. The questionnaires were either completed orally or online. Due to the privacy and wishes of the participants, the questionnaires that are filled in orally are not recorded but globally written out. The questionnaires in this research study are used to collect more data on how to bring up children with ASD multilingually: on the one hand by consulting professionals on multilingualism and ASD and on the other hand by
consulting parents that have experience in bringing up their children with ASD multilingually. This last group will be covered in the next section.
Participants.
Different Dutch and foreign professionals were asked to participate in this research study. All professionals were found in literature on ASD and multilingualism and/or by using Google Search. Eventually, two different Dutch professionals and one foreign professional were consulted in order to collect more information on multilingualism, ASD and
37
Mirjam Blumenthal is a senior researcher at PonTeM at the Royal Dutch Kentalis, the centre for research, development and innovation for people with auditory and/or communicative impairments. She is a researcher in the field of cultural and linguistic diversity in children with auditory and/or communicative impairments (Royal Dutch Kentalis, n.d.). Moreover, she wrote a book in 2009 about the multilingual development and upbringing of this group.
Antje Orgassa is a lecturer and researcher at the HAN University of Arnhem and Nijmegen in the Netherlands. She is a researcher in the field of language impairments, ASD, language development and multilingualism at the bachelor of speech therapy (Hogeschool van Arnhem en Nijmegen, 2011).
Diane Rodriguez is an associate professor in the division of curriculum and
teaching at the Fordham University in the United States (Fordham University, 2015). She is a researcher in the field of special education, teacher preparation, and bilingual and multicultural education. As an addition, she wrote different articles, book (chapters) and created YouTube documentaries about (bilingual) special education and teacher
preparation.
Materials.
The in-depth questionnaire for professionals can be found in Appendix C. The questions were set up in Microsoft Word to make it easier to fill in the (long) answers, to save intermediately and to be more accessible offline. The questions are used for both Dutch professionals as for foreign professionals in order to have consistency. The questions were created in Dutch, and then translated into English.
The main goal of the questions was to obtain more in-depth data on ASD,
multilingualism and multilingual upbringing. This resulted in open questions, to give the professionals enough space for their thoughts, experience, expertise and suggestions on ASD and multilingualism. This also made it possible to interview some of the
