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Article
Publication date: 12 November 2019

Henny Kupferstein

The purpose of this paper is to explore why autistic people and their caregivers choose interventions other than applied behavior analysis (ABA), and how their decision impacts…

13379

Abstract

Purpose

The purpose of this paper is to explore why autistic people and their caregivers choose interventions other than applied behavior analysis (ABA), and how their decision impacts them over their lifespan. The focus group was divided into those who pursued augmentative and alternative communication (AAC)-based supports, received ABA, selected other interventions or received no intervention at all. The reported posttraumatic stress symptoms (PTSS) of ABA recipients were compared to non-ABA recipients in order to evaluate the long-term impacts of all intervention types. Using a mixed-method thematic analysis, optional comments submitted alongside a quantitative online survey were reviewed for emergent themes. These comments augmented the survey Likert scores with a qualitative impression of the diverse intervention-related attitudes among participants. Investigating the lived experiences of autism intervention recipients illuminated the scope of the long-term impacts of each intervention that was chosen. Overall, autistics who received no intervention fared best, based on the lowest reported PTSS. These findings may inform the potential redesign of autism interventions based on the firsthand reported experiences and opinions of autistics.

Design/methodology/approach

The aim of this study was to conduct research that is both question-driven and data-driven to aid in the analysis of existing data (Van Helden, 2013). In the research question-driven approach, the independent variables were the intervention type and duration of exposure relative to lifespan; the dependent variables were the PTSS severity score and binary indicator of meeting PTSS criteria. The analyses that were conducted included linear regression analyses of severity score on intervention type and duration, and χ2 tests for independence of the probabilities of PTSS criterion satisfaction and intervention type. This experiment was designed to test the data-driven hypothesis that the prevalence and severity of PTSS are dependent on the type of autism intervention and duration of exposure. After reviewing the primary data set, the data-driven inquiry determined that the sample for secondary analysis should be categorized by communication-based vs non-communication-based intervention type in order to best complement the limitations and strengths of the published findings from the primary analysis.

Findings

Autistics who received no intervention had a 59 percent lower likelihood of meeting the PTSS criteria when compared to their ABA peers, and they remained 99.6 percent stable in their reported symptoms throughout their lifespan (R2=0.004). ABA recipients were 1.74 times more likely to meet the PTSS criteria when compared to their AAC peers. Within the 23 percent who selected an intervention other than ABA, consisting of psychotherapy, mental health, son-rise and other varying interventions, 63 percent were asymptomatic. This suggests that the combined benefits of communication-based interventions over behaviorism-influenced ABA practices may contribute to enhanced quality of life. Although not generalizable beyond the scope of this study, it is indicated from the data that autistics who received no intervention at all fared best over their lifetimes.

Research limitations/implications

The obvious advantage of a secondary analysis is to uncover key findings that may have been overlooked in the preliminary study. Omitted variables in the preliminary data leave the researcher naive to crucially significant findings, which may be mitigated by subsequent testing in follow-up studies (Cheng and Phillips, 2014, p. 374). Frequency tables and cross-tabulations of all variables included in the primary analysis were reproduced. The secondary analysis of existing data was conducted from the design variables used in the original study and applied in the secondary analyses to generate less biased estimates (Lohr, 2010; Graubard and Korn, 1996). Inclusion criteria for each intervention group, PTSS scores and exposure duration, were inherited from the primary analysis, to allow for strategic judgment about the coding of the core variables pertaining to AAC and PTSS. The data sample from 460 respondents was reduced to a non-ABA group of n=330. An external statistician scored each respondent, and interrater reliability was assessed using Cohen’s κ coefficient (κ=1).

Practical implications

Including the autistic voice in the long-term planning of childhood interventions is essential to those attempting to meet the needs of the individuals, their families and communities. Both parents and autistic participant quotes were obtained directly from the optional comments to reveal why parents quit or persisted with an autism intervention.

Social implications

Practitioners and intervention service providers must consider this feedback from those who are directly impacted by the intervention style, frequency or intensity. The need for such work is confirmed in the recent literature as well, such as community-based participatory research (Raymaker, 2016). Autistics should be recognized as experts in their own experience (Milton, 2014). Community–academic partnerships are necessary to investigate the needs of the autistic population (Meza et al., 2016).

Originality/value

Most autistic people do not consider autism to be a mental illness nor a behavior disorder. It is imperative to recognize that when injurious behavior persists, and disturbance in mood, cognition, sleep pattern and focus are exacerbated, the symptoms are unrelated to autism and closely align to the diagnostic criteria for posttraumatic stress disorder (PTSD). When PTSD is underdiagnosed and untreated, the autistic individual may experience hyperarousal and become triggered by otherwise agreeable stimuli. Since autism interventions are typically structured around high contact, prolonged hours and 1:1 engagement, the nature of the intervention must be re-evaluated as a potentially traumatic event for an autistic person in the hyperarousal state. Any interventions which trigger more than it helps should be avoided and discontinued when PTSS emerge.

Details

Advances in Autism, vol. 6 no. 1
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 2 January 2018

Henny Kupferstein

The purpose of this paper is to examine the prevalence of posttraumatic stress symptoms (PTSS) in adults and children who were exposed to applied behavior analysis (ABA) autism…

4576

Abstract

Purpose

The purpose of this paper is to examine the prevalence of posttraumatic stress symptoms (PTSS) in adults and children who were exposed to applied behavior analysis (ABA) autism early childhood intervention. Using an online questionnaire to survey autistic adults and caregivers of autistic children, the author collected data from 460 respondents on demographics, intervention types, and current pathological behaviors with symptom severity scales. This study noted PTSS in nearly half of ABA-exposed participants, while non-exposed controls had a 72 percent chance of being asymptomatic. ABA satisfaction ratings for caregivers averaged neutral or mild satisfaction. In contrast, adult satisfaction with ABA was lower on average and also tended to take on either extremely low or extremely high ratings. Exposure to ABA predicted a higher rate and more severe PTSS in participants, but the duration of exposure did not affect satisfaction with the intervention in caregivers.

Design/methodology/approach

Participants were recruited for an online survey through social media networks, adult gatherings, social skills groups, and autism support groups nationwide. Adult inclusion criteria consisted of autism – diagnosed or self-diagnosed – and an age of 18 or older. A total of 460 respondents, consisting of autistic adults and caregivers of autistic children, completed an online survey. The caregiver entries (n=217) concerned 79 percent male children, 21 percent female children (male to female 3.80:1), and one MtF transgender child, ages 1-38, with an average age at diagnosis of 4.69 years. The adult entries (n=243) concerned 30 percent males, 55 percent females (male to female 0.55:1), and 14 percent other gender, ages 18-73, with an average age at diagnosis of 25.38 years.

Findings

Nearly half (46 percent) of the ABA-exposed respondents met the diagnostic threshold for PTSD, and extreme levels of severity were recorded in 47 percent of the affected subgroup. Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA. Adults and children both had increased chances (41 and 130 percent, respectively) of meeting the PTSD criteria if they were exposed to ABA. Both adults and children without ABA exposure had a 72 percent chance of reporting no PTSS (see Figure 1). At the time of the study, 41 percent of the caregivers reported using ABA-based interventions.

Originality/value

The majority of adult respondents were female, raising questions about the population of online autistic survey respondents. Further, the high numbers of reported gender other than male or female in the adult respondents, as well as at least on MtF child from the caregiver respondents indicates that future studies should consider these intersections. These accompanied significant discrepancies in reporting bias between caregivers and ABA-exposed individuals, which highlight the need for the inclusion of the adult autistic voice in future intervention design. Based on the findings, the author predicts that nearly half of ABA-exposed autistic children will be expected to meet the PTSD criteria four weeks after commencing the intervention; if ABA intervention persists, there will tend to be an increase in parent satisfaction despite no decrease in PTSS severity.

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