Parent Perceptions About Autism Spectrum Disorder Influence Treatment Choices

Mire, Sarah S.; Gealy, Whitney; Kubiszyn, Tom; Burridge, Andrea; Goin‐Kochel, Robin P.

doi:10.1177/1088357615610547

Cited by 41 publications

(17 citation statements)

References 47 publications

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“…Parents (13.2%) who received government subsidised treatment from schools or hospitals reported that the costs of the treatments were reasonable. Accessing school-based services is consistent with reports by Patten et al [27] and Mire et al [28]…”

Section: The Cost Involved In Various Treatments As Perceived By the supporting

confidence: 89%

The views and knowledge of parents of children with autism spectrum disorder on a range of treatments

et al. 2017

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Autism spectrum disorder (ASD) is a severe, lifelong neurodevelopmental condition without a cure. In a plethora of available and new treatments there is no exclusively accepted treatment. The variability and severity of symptoms differ widely between children with ASD, and over time, treatments advised by professionals have varied. Therefore, it is imperative that parents collaborate with health professionals to select and design treatment programmes. Parents of children with ASD can provide significant data on the effects of a wide variety of treatments. Parents need accurate knowledge of the treatments, as they play a vital role in selecting and implementing them. This is done by the health professionals who provide counselling and information to the parents about available and evidence-based treatments. In this study, treatment was defined as any medical or therapeutic intervention for children with ASD. The Diagnostic and Statistical Manual of Mental Disorders-IV was used to describe the characteristics and diagnostic criteria of the children in this study. [1] Two overlapping categories of treatment were used in this study. The first grouping is in accordance with the National Standards Report, which was in operation at the time of the study, where treatment is classified according to its evidence basis as established, emerging or unestablished. [2] Established treatments are treatments for which there is evidence of a beneficial effect. [2] Examples of established treatments include pivotal response training, discrete trial instruction, functional communication training and social stories. Emerging treatments are those supported by one or more studies that suggest the intervention may produce positive outcomes; however, not enough studies have consistently shown these benefits. [2] Treatments such as augmentative and alternative communication, picture exchange communication system (PECS), and developmental, individual differences and relationship-based model (DIR)/floortime, are classified as emerging treatments. As there is no evidence to support the success of the aforementioned treatments, they are referred to as unestablished treatments. Studies do not report ineffective or harmful treatments as researchers tend to change the focus of their studies to treatments which may be effective as soon as they suspect a treatment to be harmful or ineffective. [2] The second category of ASD treatments comprised developmental approaches, naturalistic behavioural approaches and controversial and alternative medicines. Developmental approaches comprise a combination of features, such as focusing interventions on the impairments associated with ASD, e.g. impairments in social interaction, verbal and nonverbal communication, and behaviour. Other features focus on including the family in decision-making and ensuring that interventions are based on the family's requirements, concerns and priorities, ensuring that intervention occurs within natural environments and providing intervention through natural methods. [3] Examp...

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Section: The Cost Involved In Various Treatments As Perceived By the supporting

confidence: 89%

The views and knowledge of parents of children with autism spectrum disorder on a range of treatments

et al. 2017

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“…For example, through visual maps, schedules and symbolic representation of events. (Mire, Gealy, Kubiszyn, Burridge, & Goin-Kochel, 2017). This category encompasses special diets, or dietary supplements, chelation, detoxification and interventions that are deemed helpful in addressing biomedical problems that have been suggested as linked to or underpinning autism.…”

Section: Introductionmentioning

confidence: 99%

Indonesian Educators’ Knowledge and Beliefs about Teaching Children with Autism

Budiyanto¹,

Sheehy²,

Kaye³

et al. 2019

AJE

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There is a large number of children with autism who need to be taught within the Indonesian education system. A significant influence on how their needs are perceived are the epistemological and cultural beliefs of teachers. This research is the first to examine these issues in the context of the Indonesian government's intention to develop an inclusive education system. An analysis of 136 questionnaire responses from teachers and educational therapists indicated that although only a minority was aware of, or had been trained in, established autism interventions, children with autism are being taught within Indonesian schools. This included being taught within regular schools. The data suggest that having access to information about autism in the Bahasa Indonesia language plays a role in educators' beliefs about the stigmatization of teachers and parents of autistic children. Teachers' epistemological beliefs were found to be linked to their beliefs in inclusive education. This research suggests that is essential for educational research to acknowledge the influence of the cultural milieu within which inclusive education is being developed. The implications of this research for how the development of inclusive education can be supported within Indonesia are discussed.

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“…Given the myriad of treatments available, it is not surprising that many families use multiple treatments [Bowker, D'Angelo, Hicks, & Wells, ; Green et al, ], implement them simultaneously [Goin‐Kochel, Myers, & Mackintosh, ], and start and stop various treatments throughout their child's life [Bowker et al, ]. Factors associated with parents' treatment selection include symptom presentation and child's age [Goin‐Kochel et al, ; Mire, Raff, Brewton, & Goin‐Kochel, ], parental education level and income [Patten, Baranek, Watson, & Schultz, ], geographic location [Murphy & Ruble, ; Mire, Hughes, Manis, & Goin‐Kochel, ], and parents' perceptions of treatment and ASD [Dardennes et al, ; Mire, Gealy, Kubiszyn, Backscheider‐Burridge, & Goin‐Kochel, ]. However, there are many unknowns about factors that influence parents' decisions to employ some treatments over others [Matson & Williams, ].…”

Section: Using Latent Class Analysis To Identify Treatment‐use Subgromentioning

confidence: 99%

Using latent class analysis to identify treatment‐use subgroups among parents of children with autism spectrum disorder

et al. 2019

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Among parents of 2,582 children (ages 4-17 years old) with autism spectrum disorder (ASD), we used latent class analysis to identify subgroups and profiles of treatment users and included annual household income in the specification of the models, then described characteristics of each subgroup. Based on three indicators of fit (Akaike's Information Criterion, Bayesian Information Criterion, and Lo-Mendell-Rubin), six latent classes of treatment users emerged. Subgroups included users of: (a) mostly private and school speech and occupational therapies; (b) nearly all treatment types; (c) mostly speech and occupational therapies, plus intensive behavioral and "other" treatments, but little medication use; (d) private therapies almost exclusively; (e) primarily psychotropic medications; and (f) mostly school-based therapies. Income significantly predicted class differences for all but one latent class. Probabilities of families' lifetime use of nine treatment types varied depending on latent classification. Proportions of families reporting having observed children's developmental regression were largest in those with the highest overall treatment use, and these children also had the lowest cognitive and adaptivefunctioning scores and the highest ASD symptom scores. Understanding patterns of treatment use among families of children with ASD is an important first step in enhancing treatment-related selection and implementation. Autism Res 2019, 12: 843-854.Lay Summary: We identified six different groups of treatment users to help explain patterns in treatment implementation among parents of children and adolescents with autism. These included families who used: (a) mostly used private and school speech and occupational therapies; (b) nearly all treatment types (private and school therapies, intensive behavioral, biomedical, psychotropic medications, and other treatments); (c) mostly speech and occupational therapies, plus intensive behavioral and "other" treatments, but little medication use; (d) private therapies almost exclusively; (e) primarily psychotropic medications; and (f) mostly school-based therapies.

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Parent Perceptions About Autism Spectrum Disorder Influence Treatment Choices

Cited by 41 publications

References 47 publications

The views and knowledge of parents of children with autism spectrum disorder on a range of treatments

The views and knowledge of parents of children with autism spectrum disorder on a range of treatments

Indonesian Educators’ Knowledge and Beliefs about Teaching Children with Autism

Using latent class analysis to identify treatment‐use subgroups among parents of children with autism spectrum disorder

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