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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.

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.

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.

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).

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.

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).

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.

Kupferstein (2018) surveyed 460 respondents and found that 46 percent of respondents met the diagnostic threshold for posttraumatic stress disorder after exposure to applied-behavior-analysis-based intervention. The purpose of this paper is to provide an evaluation a critical analysis of Kupferstein (2018) including the experimental methods and discussion of the results.

The authors evaluated the Kupferstein’s methodological rigor with respect to the use of hypothesis testing, use of indirect measures, selection of respondents, ambiguity in definitions, measurement system, and framing of the experimental question when conducting the correlational analysis in addition to Kupferstein’s analysis and discussion of the results.

Based upon the analysis, Kupferstein’s results should be viewed with extreme caution due to several methodological and conceptual flaws including, but not limited to, leading questions used within a non-validated survey, failure to confirm diagnosis, and incomplete description of interventions.

It is the authors’ hope that this analysis provides caregivers, clinicians, and service providers with a scientific lens which will useful in viewing the limitations and methodological flaws of Kupferstein.

The purpose of this investigation is to gain insight into parents' perceptions of benefits vs burdens (value) of educational and healthcare service received for their child with ASD. Parents are the main integrators of long-term educational and healthcare service for their child with ASD.

Design/methodology/approach included (1) a sentiment analysis of discussion forum posts from an autism message board using a rule-based sentiment analysis tool that is specifically attuned to sentiments expressed in social media and (2) a qualitative content analysis of one-on-one interviews with parents of children diagnosed with ASD, complemented with interviews with experienced educators and clinicians.

Findings reveal the link between customized service integration and long-term benefits. Both parents and service providers emphasize the need to integrate healthcare and educational service to create holistic long-term care for a child with ASD. Parents highlight the benefits of varied services, but availability or cost are burdens if the service is not publicly provided, or covered by insurance. Service providers' lack of experience with ASD and people's ignorance of the challenges of ASD are burdens.

Ensuring health outcomes for a child with ASD requires an integrated service system and long-term, customer-centric service process because the scope of service covers the child's entire childhood. Customized educational and healthcare service must be allocated and budgeted early in order to reach the goal of a satisfactory service output for each child.

This is the first service research to focus on parents' challenges with obtaining services for their child with ASD. This paper provides service researchers and managers insight into parents' perceptions of educational and healthcare service value (i.e. benefits vs. burdens) received for their child with ASD. These insights into customer-centric perceptions of value may be useful to research and may help service providers to innovate and provide integrated service directly to parents, or indirectly to service providers, who serve children with ASD.