Families raising children attending autism-specific government-funded schools

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Study 1: Demographic characteristics and typical early management of learners attending the six autism-specific government-funded schools in SA – theoretical and clinical implications 

The adverse impact of contextual factors, which include demographic factors, on the early management of learners attending autism specific schools in SA was confirmed in the current study. The majority of caregivers were mothers (85.0%) who became concerned about their child‟s development at the average age of 25.2 months, but only a few (3.8%) caregivers considered ASD as a possible cause. Demographic factors which were significantly associated with delayed age at parental concern (>48 months) included the respondent being the father, family-caregiver, or guardian, being a South African citizen, and having a lower level of parental education. The last two findings are in accordance with previous research which also confirmed that ethnicity and lower level of parental education may contribute to the delayed age at parental concern (Werner, Dawson, Osterling, & Dinno, 2000; Young, Brewer, & Pattison, 2003; Zablotsky et al., 2017). Research conducted in HICs and LMICs on whether the respondents‟ specific relationship to the child with ASD is associated with the age at parental concern could not be found. The results of this study are in agreement with well-known research findings that mothers‟ higher level of education is associated with better outcomes for children in general (Carneiro, Meghir, & Parey, 2013).
Furthermore, the results indicated that the child‟s age at parental concern influenced the age at the first assessment (on average 34.75 months), the age of ASD diagnosis (on average 46.6 months) and age at admission to the autism-specific school (6.8 years). The slow trajectory of delayed intervention may point to the limited awareness of ASD amongst caregivers and professionals, poverty, and the limited healthcare and educational services available for children with ASD in SA. One of the reasons why caregivers became concerned about their children‟s development was late speech and language emergence. The results are in agreement with studies conducted in HICs and LMICs, which found that although ASD can be identified early in life, early intervention is still mostly delayed (Bello-Mojeed et al., 2017; Goin-Kochel & Meyers, 2005; Latif & Williams, 2007; Mandell et al., 2009; Samms-Vaughan, 2014; Van Biljon et al., 2015). Therefore, it is important for SLTs to establish and advance early ASD intervention services in the communities where they are working (South African Speech-Language Hearing Association [SASLHA], 2017). Moreover, SLTs should raise awareness of the early signs of ASD and advocate early intervention for children with ASD (SASLHA, 2017).
Lastly, the odds of caregivers becoming concerned late (>48 months) was higher when the first professional contacted regarding the caregiver’s concern, was a specialist professional (developmental paediatrician, paediatric neurologist or a child psychiatrist), than when it was an allied health professional, a governmental clinic, or a general practitioner. Possible explanations include that there is a shortage of specialist professionals in SA, and caregivers ultimately do not have access to early diagnostic services. The majority of early diagnostic services are situated in urban areas and there is thus a need to establish early communication intervention services in rural communities in SA (SASLHA, 2017). A further finding was that in most instances allied health professionals were consulted first. The finding is in agreement with research in the US, which found that children suspected of ASD are usually referred to SLTs by allied health professionals after screening (Self, Coufal, & Parham, 2010). This could indicate that these health professionals are known to be knowledgeable about ASD as many allied health professionals are trained to identify ASD and are involved in the diagnosis (Self et al., 2010). SLTs should create opportunities for knowledge and skills sharing among allied health professionals in order to promote early communication intervention services for children with ASD (SASLHA, 2017). Early communication intervention, with an emphasis on an SLT approach, should be an essential component of every department, hospital, clinic, or practice providing services to young children with ASD (SASLHA, 2017).
This study provided foundational research which should be built upon in future studies. The data obtained can be used to systemise local priorities, such as early intervention programmes, for timely diagnosis and to provide targeted support for all caregivers, especially for mothers in SA. Research has shown that mothers of children with ASD are usually responsible for taking care of their children and typically spend more time with them (Boyd, 2002). Therefore, if mothers are educated about early ASD symptoms the age of identification and diagnosis may be lowered. Lastly, the study adds knowledge about best practice in the diagnosis of ASD. It is important that young infants and toddlers should be screened for atypical behaviours (Huerta & Lord, 2013). Should the screening indicate cause for concern the child should be referred for formal diagnostic assessment. Furthermore, it is important to include standardized assessments for cognitive, developmental, and language areas. These tests should provide in-depth information of children‟s overall level of ability and functioning and may help the clinician to make a diagnosis (Huerta & Lord, 2013). It is also important that caregivers of children with ASD are actively involved in the early intervention process as they are usually involved in the intervention process as co-therapists and should help set goals for their child‟s treatment (Zwaigenbaum et al., 2015). It is important to consider developmental factors throughout the entire diagnostic process (Huerta & Lord, 2013). Research evidence suggest that nonverbal cognitive skills at age two can predict the verbal ability at age five (Huerta & Lord, 2013). Likewise, repetitive behaviour and poor adaptive skills at age two can predict more behavioural difficulties in older children diagnosed with ASD (Huerta & Lord, 2013). Lastly, it is important to determine the socio-economic characteristics of the family as this may present barriers to service provision and influence participation in intervention (Zwaigenbaum et al., 2015).

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Study 2: Socio-demographic characteristics of and financial costs encountered by families whose children attend the six autism-specific government-funded schools in SA – theoretical and clinical implications

There is a need for a more holistic view of families raising school-aged children with ASD (Aljunied & Frederickson, 2014). In the second study, the family systems approach and the ICF-CY were used as frameworks to view families raising children with ASD from a broader perspective (Horlin et al., 2014; WHO, 2007). The study focused on describing environmental factors, such as socio-demographic characteristics of and financial costs encountered by families whose children attend autism-specific government-funded schools in SA.
Given the high non-response rate of the survey questionnaire and the subsequent limited generalizability of the results, unexpected similarities were found between the demographic profiles of the families of children with ASD in the schools, and the characteristics of the national majority of families in SA (Statistics South Africa, 2015). The majority of caregivers were Black, followed by White, Coloured, and Asian caregivers in similar distributions as in the population demographics in SA (Statistics South Africa, 2015). It is a positive observation that families from the Black population group now have better access to autism-specific schools for their children since they were excluded from these schools in the past (Van Biljon et al., 2015). Lastly, almost 50% of the mothers in the study indicated that they were unmarried. Although we are cautious to generalise, the results may, to some extent, be seen as representative of SA mothers as reported by Statistics South Africa (2015).
The present study also confirmed existing evidence (Sharpe & Baker, 2011) that the societal costs of raising a child with ASD are exceptionally high. Families in the study were receiving a monthly household income that could be classified as “average” in the SA context but had to spend a significant amount of money on monthly school fees, transportation to and from school, medical insurance payments, and extracurricular therapeutic services. Furthermore, significant associations were found between the following variables and monthly household income: qualification of the father, qualification of the mother, marital status of the mother, school fees, school bursaries, and medical insurance schemes payments. The findings indicate that the higher the monthly household income, the higher the qualification of the father and mother, the school fees, the medical insurance scheme payments and the extracurricular therapy services. Therefore,all families of school-aged children with ASD experience a high financial burden and require extra financial support from the government. It is not clear, however, how the government is financially supporting families of children with ASD as there are limited data available. A few important differences were found between the data in this study and research from other LMICs. The sample showed higher monthly household income, lower parental education and more single mothers than in other LMICs (Chandran, 2016; Meral & Cavkaytar, 2012; Rivard, Terroux, Parent-Boursier, & Mercier, 2014; Samadi, Mahmoodizadeh, & McConkey, 2012). The differences may indicate the diversity of average families with children with ASD in these countries and the need for context-specific research. This study increased the understanding of the financial impact of ASD on the entire family. This finding implies that it is important for SLTs to broaden their perspective by using the family systems approach and the ICF-CY as two functional frameworks when working with families of children with ASD. Since there is limited research available about the contextual factors of the ICF-CY for children with ASD in LMICs (de Schipper et al., 2015), the research may contribute to the ICF-CY Core set of contextual factors for ASD in LMICs. Future research should focus on linking the contextual factors to the ICF core sets for ASD in LMICs. Various professionals, such as SLTs, are directly involved in the identification, diagnosis, and treatment of ASD (ASHA, 2016). It is therefore imperative for them to understand the financial implications on the family of a child with ASD, and the influence of the specific contextual factors related to the family on the child‟s everyday life outcomes. In conclusion, the findings of the study imply that there should be a greater emphasis on finding ways to support families of children with ASD in LMICs financially. Furthermore, there is a need for professionals in private practice, such as SLTs, to find ways to charge reduced rates for therapies in LMICs families who could not otherwise obtain financial support.

Part I: Introduction and method
Chapter 1 Introduction
1.1 Introduction
1.2 Background
1.3 Applicability of the International Classification of Functioning, Disability and Health Child and Youth Version (ICF-CY) for children with ASD
1.4 Contextual factors influencing functional and meaningful outcomes of ASD intervention
1.5 Problem statement and rationale
1.6 Terminology
1.7 Summary
Chapter 2 Method
2.1 Introduction
2.2 Research aims
2.3 Research studies
2.4 Research methods
2.5 Ethical considerations
2.6 Research context
2.7 Participants
2.8 Survey material
2.9 Procedures
2.10 Summary
PART II: Accepted and submitted papers
Chapter 3 Onset of intervention for learners in autism-specific government-funded schools
Chapter 4 Families raising children attending autism-specific government-funded schools
Chapter 5 Profiles of public and private autism-specific schools in Gauteng
Part III: General discussion, implications and conclusion
Chapter 6
6.1 Introduction
6.2 Study 1: Demographic characteristics and typical early management of learners attending the six autism-specific government-funded schools in SA – theoretical and clinical implications
6.2 Study 2: Socio-demographic characteristics of and financial costs encountered by families whose children attend the six autism-specific government-funded schools in SA – theoretical and clinical implications
6.3 Study 3: Profiles of two autism-specific public and two autism-specific private schools in South Gauteng Province – theoretical and clinical implications
6.4 Contribution of the studies to the field of speech-language pathology
6.5 Critical evaluation of the study
6.6 Recommendations for future research
6.7 General conclusions
References

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