Research Findings

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2022 Vanderbilt Kennedy Center Science Day Poster Session

Controversies of Applied Behavior Analysis and Neurodiversity in Autism: A scoping review
Jordyn WalkingStick (Presenter), Maya Sachs, Audrey Scudder, Meredith Wang, T. A. Meridian McDonald, PhD, MS

Introduction: Applied behavior analysis (ABA) is promoted as the gold standard for autism treatment[1]; however this treatment was developed without input from autistic adults. Many autistic adults decry the use of ABA in autism[2]. ABA proponents claim that ABA is needed to teach autistic children and adults social communication skills and reduce challenging behavior to improve their functioning and outcomes in society. A systematic review of the literature is needed to organize ethical arguments regarding this controversy.
Methods: We conducted a systematic review of ABA ethics in relation to claims of neurodiversity through academic journals and journalist magazines and newspapers using abstracts from over 100 academic databases, including PubMed Medline, EBSCO, OVID, PsycINFO, Proquest Central, ERIC, Social Science Premium Collection, Web of Science, and Google Scholar. We excluded articles that did not refer to neurodiversity claims. We used Abstrackr to double-screened all abstracts based on inclusion/exclusion criteria. All authors discussed and resolved conflicts through consensus. We extracted data on a) source type; b) ethical claims (arguments, rebuttals, common ground); and c) positionality (e.g., autist, provider, researcher). We present our preliminary findings.
Results: Of the 492 abstracts, we included 116 (24%) papers for full review (in progress) and data extraction (in progress). Of the 38 papers fully reviewed to date, we excluded 24 papers because they did not discuss neurodiversity claims or ethics of ABA. We sorted the 14 remaining papers (8 peer-reviewed and 6 news articles) into three categories: pro-ABA, anti-ABA, or neutral. Only two autists disclosed authoring source material; researchers, BCBA providers, reporters, and one lawyer comprise the remaining authors. Pro-ABA: These papers, which did not include autistic authorship, emphasize that ABA is needed to teach skills to autistic children to help them function in society and to reduce parenting/family stress. Some articles argue that activists misrepresent ABA by focusing on “bad actors” who do not represent the field. Anti-ABA papers: Autistic authors advocated for neurodivergent representation and acceptance in society. One of the authors experienced ABA and discusses the negative impact it has had on his life as a result of the serious stress it caused him, while the other argues that ABA intervention invalidates autistic identities. Neutral papers: One paper discusses how counselors consider ethics in different ways when implementing ABA with autists and the other discusses several court cases regarding the Lovaas method, a precursor to ABA.
Discussion: Autistic voices are underrepresented in the discussion of ethics in ABA. Research is needed to better understand Autistic views and how ABA proponents conceptualize and address the concerns raised by autistic people and neurodiversity proponents.
Keywords: Applied Behavioral Analysis; Neurodiversity; Autism
References:
1. Gitimoghaddam, M., Chichkine, N., McArthur, L., Sangha, S. S., & Symington, V. (2022). Applied Behavior Analysis in Children and Youth with Autism Spectrum Disorders: A Scoping Review. Perspectives on Behavior Science. https://doi.org/10.1007/s40614-022-00338-x

2. Wilkenfeld, D. A., & McCarthy, A. M. (2020). Ethical Concerns with Applied Behavior Analysis for Autism Spectrum “Disorder.” Kennedy Institute of Ethics
Journal, 30(1), 31-69. https://doi.org/10.1353/ken.2020.0000

Mind the NIH-Funding Gap: Structural Discrimination in Physical Health-Related Research for Cognitively Able Autistic Adults
T.A. Meridian McDonald & Audrey M. Scudder (Presenter)

Introduction: Autistic adults experience disparities in physical health and health care access[1]. A major barrier to addressing these disparities is a lack of federal funding for research on this topic. In seeking funding from the National Institutes of Health (NIH), we discovered nodes that contribute to structural discrimination in physical health-related research for autistic adults.
Methods: To examine this structural discrimination, we systematically searched funded research on all physical health-disparity conditions in autistic adults identified by Crown et al. (2015) using NIH RePORTER. The abstracts of the returned grants were then examined and categorized.
Results: Among the 61 unique studies returned by our searches, only 12 explicitly included autistic adults in their target population. None focused on improving the relevant physical health condition through intervention, programs, or services for autistic adults.
Discussion: The lack of NIH-funded research addressing health disparities in autistic adults demonstrates that we need updated policies and procedures that support research on physical health disparities in populations with developmental or mental health conditions.
Keywords: Autism; Discrimination; Physical Health
References:
1. Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015). The health status of adults on the autism spectrum. Autism: The International Journal of Research and Practice, 19(7), 814-823. https://doi.org/10.1177/1362361315577517

Bully Victimization in Autistic Adolescents and Adults: A Systematic Review
Claire Cotton, BS, Chen Jin (Presenter), Claire Hildebrand, Delaney Caldwell BS, Heather E. Laferrier, MLIS, T. A. Meridian McDonald, PHD, MS

Introduction: Bullying, an adverse childhood experience (ACE), is a significant public health problem that is exacerbated in autism[1,2,3]. Autistic children experience more physical, verbal, and relational/indirect (e.g., ostracism, rumors) bully victimization (BV) than their peers who do not have an autism diagnosis[1]. Further, 40% of them report experiencing bullying daily[2]. Although adolescents are often included in BV studies of children, older adolescents and adults navigate different settings with less supervision/greater autonomy than autistic children. A synthesis of the experiences, treatment, and outcomes related to BV is needed to better understand and inform research on BV occurring with autistic older adolescents and adults.
Methods: We conducted a scoping review of research literature (cohort, case-control, cross-sectional, and single-case studies) on BV in autistic adolescents and adults (average age 14 and older) diagnosed, or self-diagnosed, with autism. We included all forms of BV, such as direct and indirect forms of physical, verbal, relational, cyber, and sexual victimization. We searched PubMed, PsycINFO, ERIC, Web of Science, and PROQUEST for studies published January 1, 1980 and later. We uploaded search results to Abstrackr and double-screened abstracts based on inclusion/exclusion criteria. We then read included abstracts in their entirety to confirm inclusion before data extraction. We extracted data for the following categories: b) study type; a) types of BV; c) participant demographic variables; d) study purpose and e) study results.
Results: Of the 4297 abstracts, 298 (7%) were included for the full review. The analysis is ongoing. Of the 216 articles fully reviewed to date, 84 articles met criteria for extraction. Of these, 24% included older adolescents, 21% included adults aged 18 and older, 32% contained mixed adolescents and adults, and the remainder were unspecified. Not all studies reported sex/gender. The concepts of sex (19 studies; M:F 2379:2181) and gender (48 studies; M:F 6039:5091; Trans/Non-binary/Other: 90) were not clearly defined within these studies. We identified emotional, familial, property destruction/theft, financial, and criminal justice as additional bully types. Some studies identified chronic and/or severe episodes as important dimensions of BV. Twenty-six studies examined the perceptions and experiences of autists and other stakeholders. Ten studies examined the relationships between BV and outcomes of psychological and physical health and quality of life. Fourteen studies included predictor variables(autistic traits and demographic variables). One qualitative study outlined a group-therapy intervention for BV.
Discussion: BV continues into older adolescence and adulthood for autists. Further research is needed to mitigate exposure to BV and develop interventions and therapies to support those surviving BV.
Keywords: Bully victimization; Autism; Adolescent and adults
References:
1. Maiano C, Aime A, Salvas M-C, Morin AJS, Normand CL. Prevalence and correlates of bullying perpetration and victimization among school-aged youth with intellectual disabilities: A systematic review. Res Dev Disabil. 2016 Mar;49-50:181-95.

2. Schroeder JH, Cappadocia MC, Bebko JM, Pepler DJ, Weiss JA. Shedding light on a pervasive problem: a review of research on bullying experiences among children with autism spectrum disorders. J Autism Dev Disord. 2014 Jul;44(7):1520-34.

3. Shetgiri R. Bullying and victimization among children. Adv Pediatr. 2013;60(1):33-51.

Understanding Provider Needs for Treating Sleep Disorders in Autistic Adults
T. A. Meridian McDonald

Introduction: A majority (64-93%) of Autists experience sleep disturbances, including insomnia, at some point in their lives[1]. Insomnia is associated with cardiovascular disease, diabetes, psychiatric conditions, and mortality[2]. Autistic adults are at increased risk of all these conditions and addressing sleep may help reduce these co-occurring conditions. Cognitive Behavioral Therapy for Insomnia (CBTI) is the front-line treatment for insomnia; it is highly efficacious and cost-effective without the side effects of medication. However, little to no research has investigated the efficacy/effectiveness of CBTI with autistic adults. Additionally, it is unknown what provider experiences are with treating sleep disturbances with this population. Other types of service providers, such as
cognitive behavioral therapy providers, report inadequate training, low competence, low confidence, and low intention to treat autistic adults. The Communication Opportunity and Motivation for Behavioral Change (COM-B) Model [3] states that (provider) motivation to engage in a behavior (e.g., treat autistic patients) is contingent on the degree to which a person has the opportunity (e.g., referrals) and the perceived capacity (e.g., training,
experiences, resources) to engage in the behavior). Therefore, a better understanding of sleep provider needs for treating this population is warranted.
Methods: This study employed a mixed methods survey/interview design to examine sleep providers’ experiences, perceptions, and attitudes regarding the treatment of sleep in autistic patients. Participants were required to treat sleep disorders in adults within the U.S. The survey gathered demographic information (geographic region, age, gender/sex, race/ethnicity, education/profession designation, practice information). The survey used quantitative and open-ended questions to examine provider experiences, perspectives, and perceived needs in treating autistic patients.
Results: Eighty-five people (74% women; 1% non-binary; 85% White/European American) participated in the study. The majority held doctoral degrees (66%) and 25% held Masters degrees. Over 60% described having no training in autism; yet 29% treated autistic patients in the past 12 months and 72% reporting treating autistic adults during their career. Although 54% felt their therapy was effective for treating sleep issues in this population, all participants endorsed numerous challenges for treating sleep in this population. Providers indicated, in both quantitative and qualitative data, concerns with using standard delivery, lack of codified adaptations, the lack of research, and the lack of available training to work with this population.
Discussion: Providers are inadequately supported due to a lack of research, codified methods, and training to work with Autists. More CBTI research in autism is needed to examine efficacy, effectiveness, and the match of standard delivery with the social-communication and motivational needs of autistic adults. Future research on bridging
provider and autistic patient needs for sleep treatment is needed.
Keywords: Sleep Disturbance and Insomnia; Autist and Provider Needs; Implementation Science
References:
1. Carmassi, C., Palagini, L., Caruso, D., Masci, I., Nobili, L., Vita, A., & Dell’Osso, L. (2019). Systematic Review of Sleep Disturbances and Circadian Sleep Desynchronization in Autism Spectrum Disorder: Toward an Integrative Model of a Self-Reinforcing Loop. Frontiers in Psychiatry, 10.https://www.frontiersin.org/articles/10.3389/fpsyt.2019.00366

2. Lovato, N., & Lack, L. (2019). Insomnia and mortality: A meta-analysis. Sleep Medicine Reviews, 43, 71-83. https://doi.org/10.1016/j.smrv.2018.10.004

3. Michie, S., van Stralen, M. M., & West, R. (2011). The behaviour change wheel: A new method for characterising and designing behaviour change interventions. Implementation Science : IS, 6, 42. https://doi.org/10.1186/1748-5908-6-42

Publications

McDonald, T. A. M., Lalani, S., Chen, I., Cotton, C. M., MacDonald, L., Boursoulian, L. J., Wang, J., Malow, B. A. (2022).  Appropriateness, acceptability, and feasibility of a neurodiversity-based self-determination program for Autistic adults. Journal of Autism and Developmental Disorders.  online version

Abstract
Published self-determination programs do not adequately address the needs of autistic adults. We designed a multi-component self-determination program, grounded in the neurodiversity paradigm, to help autistic adults achieve goals to improve their quality of life. The first phase involved 5 days of psychoeducation, practice, and social events; the second phase included 3 months of telecoaching; and the third phase included follow-up. Thirty-four university students coached 31 autistic adults on three evolving goals. On average, participants completed one goal per week. Most participants were satisfied with the program. We found that the program was appropriate, acceptable, and feasible. This program is a promising approach to helping autistic adults gain self-determination skills and improve their quality of life.

McDonald, T. A. M., Lalani, S., Chen, I., Cotton, C. M., MacDonald, L., Boursoulian, L. J., Wang, J., Malow, B. A. (2022).  Appropriateness, acceptability, and feasibility of a neurodiversity-based self-determination program for Autistic adults. Journal of Autism and Developmental Disorders.  online version

Abstract
Published self-determination programs do not adequately address the needs of autistic adults. We designed a multi-component self-determination program, grounded in the neurodiversity paradigm, to help autistic adults achieve goals to improve their quality of life. The first phase involved 5 days of psychoeducation, practice, and social events; the second phase included 3 months of telecoaching; and the third phase included follow-up. Thirty-four university students coached 31 autistic adults on three evolving goals. On average, participants completed one goal per week. Most participants were satisfied with the program. We found that the program was appropriate, acceptable, and feasible. This program is a promising approach to helping autistic adults gain self-determination skills and improve their quality of life.

McDonald, T. A. M. (2021).  The broader autism phenotype constellations-disability matrix paradigm: Theoretical model for autism and the broader autism phenotype. Medical Hypotheses.  online version

Abstract
The prevalence of autism has increased dramatically over the last 60 years, and the cause of this increase is unclear. In this paradigm-shift paper, I propose an explanatory paradigm for the cause of autism and its increased prevalence in the general population. I also discuss how social and historical contexts may have influenced the evolution and manifestation of specific traits in the autism population. These traits expand the characterization of the broader autism phenotype to include a constellation of socially valued traits, termed Broader Autism Phenotype Constellations (BAPCO). The frequency of these traits may have increased due to assortative mating opportunities that occurred alongside social changes in education and occupational opportunities over the last 100 years. I propose that assortative mating can lead to both positive and negative developmental consequences affecting social and language development. I also propose that BAPCO traits, which are not intrinsically disabilities, could interact with co-occurring conditions in a new model called the BAPCO-Disability Matrix Paradigm (BAPCO-DMAP). In this paradigm, autism is located at the intersection of BAPCO traits and at least one co-occurring condition. These proposed models support the need to create a more comprehensive definition of autism that includes constellations of BAPCO traits. The BAPCO-DMAP paves the way to testable predictions of autism prevalence and provides a framework to better understand the foundational traits of autism. Finally, this paradigm radically redefines the broader autism phenotype with characteristics that can inform therapy and child development.

McDonald, T. A. M. (2020).  Autism Identity and the “Lost Generation”: Structural Validation of the Autism Spectrum Identity Scale (ASIS) and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum. Autism in Adulthood.  online version

McDonald 2020 Lost Generation

Abstract
Background: A population segment of autistic adults are under-identified due, in part, to historic changes in criteria for diagnosing autism and diagnostic biases related to gender, socioeconomic status, and other individual characteristics such as intellectual functioning. Some of these individuals, described as the “lost generation”, may choose to self-diagnose. Although little is known about this population, it is possible that they share similar self-conceptualizations or internalized stigma as their diagnosed counterparts. This study reports on the structural validity of the Autism Spectrum Identity Scale (ASIS) with individuals diagnosed and self-diagnosed with autism and compares the demographic characteristics, stigma, self-concept, and quality of life of these two groups.
Methods: Over 1,000 adults diagnosed (n = 893) or self-diagnosed (n = 245) with autism were recruited through organizations serving the autism community to participate in a nationally distributed online survey that included demographic questions and measures for stigma, self-concept, quality of life, and wellbeing. The diagnosed dataset was randomly split with exploratory factor analysis performed on a training dataset. Split-half cross-validation was used to predict the factor structure of the holdout dataset. Then, the full diagnosed dataset structure was used to determine the generalizability of the factor structure to the self-diagnosed dataset. The diagnosed and self-diagnosed were also compared for differences in gender, age, employment status, diagnostic term preference, and factors of self-concept (autism identity and self-esteem), stigma, and quality of life.
Results: Factor analysis of diagnosed participants yielded a four-factor structure, consistent with previous research, with strong split-sample cross-validation and good internal consistency. Factor predictions of the self-diagnosed dataset from the diagnosed dataset ranged from 0.97 – 1.00 with similar internal consistency. Self-diagnosed participants were more likely to be older, women, or employed and less likely to be students or prefer the term “autism” than those with an autism diagnosis. The groups were remarkably similar in reported stigma, self-esteem, quality of life and in ASIS factors; both groups reported lower quality of life than the general population.
Conclusions: The ASIS demonstrated the same internal structure with both the diagnosed and self-diagnosed samples. The profile of self-diagnosed participants matches the profile hypothesized for the “lost generation” and others at risk of being under-identified for autism. Both populations appear to be similarly struggling with employment, stigma, and quality of life. Future research should examine whether self-diagnosed individuals meet criteria for autism.

McDonald, T. A. M. (2017). Discriminative and criterion validity of the Autism Spectrum Identity Scale (ASIS). Journal of Autism and Developmental Disorders. online version

Abstract
Individuals on the autism spectrum face stigma that can influence identity development. Previous research on the 22-item Autism Spectrum Identity Scale (ASIS) reported a four-factor structure with strong split-sample cross-validation and good internal consistency. This study reports the discriminative and criterion validity of the ASIS with other measures. Adults (n = 1139) who have, or identify with, an autism spectrum diagnosis took a nationally distributed online survey that also included demographic questions and measures for stigma, self-esteem, and quality of life (QoL). All four ASIS factors discriminated from measures of stigma and self-esteem. The ASIS also showed good criterion validity with the factors of Positive Difference and Changeability demonstrating widespread relationships with subjective quality of life in the expected directions.

McDonald, T. A. M. (2016). Identity as a mediator between stigma and stereotype threat on postsecondary outcomes for adults on the autism spectrum (Order No. 10096823). Available from ProQuest Dissertations & Theses Global. (1781235653).

Abstract
Postsecondary outcomes for individuals on the autism spectrum are a great concern to society. Although previous research has identified factors that predict positive outcomes, wide variation exists for those for whom the best outcomes are predicted. Therefore, other factors that contribute to postsecondary outcomes should be explored. This dissertation combines the psychological framework of stereotype threat with the sociological theory of stigmatized identity to explore how variation in identity mediates postsecondary outcomes for adults on the autism spectrum. The dissertation is written in the format of three publishable papers.

The three papers draw from an online sample of 1139 participants who were diagnosed, or identified with, an autism spectrum disorder. The participants responded to a national online survey that included demographic questions and measures for stigma, self-esteem, and quality of life (QoL) and items for the development of the Autism Spectrum Identity Scale (ASIS).

In paper 1, an identity scale was developed from stigma theory and the first-hand literature. The final 22-item, four-factor ASIS demonstrated strong cross-validation. The internal consistency for the factors, Changeability, Positive Difference, Context Dependent, and Spectrum Abilities, ranged from strong to adequate.

In paper 2, differences in ASIS factor scores were examined in relation to gender, identification with diagnostic categories, and postsecondary outcomes of employment and education. Males, students, the employed, and those who identify with Asperger’s Syndrome reported higher ASIS factor scores.

In paper 3, I examined the interrelationships of factors, such as stigma, self-esteem, and QoL, and their relationship to gender, diagnostic category identification, and postsecondary outcomes. Males, students, the employed and those who identify with Asperger’s Syndrome reported higher well-being across each of the factors. Finally, I examined whether ASIS factors predicted QoL over and above stigma and self-esteem. The ASIS factors demonstrated complex relationships with stigma and self-esteem on outcomes of QoL. There was evidence of intersectionality where women who identify with autism demonstrated the poorest outcomes in  employment and well-being. Future research should examine causal mechanisms between identity and outcomes for this population.

Maynard, D., McDonald, T. M., &. Stickle, T., (2015) Parents as a team: Mother, father, a child with autism spectrum disorder, and a spinning toy. Journal of Autism and Developmental Disorders. 10.1007/s10803-015-2568-5  

Abstract
This paper is a single case study involving a visit to a diagnostic clinic for autism spectrum disorder. A young boy finds a toy that he can hold with one hand and spin with another. In order to retrieve the toy and leave it in the clinic, the parents engage in a team effort. We describe this achievement in terms of two styles of practice or interactional routines with differing participation frameworks. We examine not only how the parents work as a team using these styles, but also how they improvise to extract the spinning toy from their son’s grasp with minimal protest on his part.

Anderson, A., McDonald, T. M., Edsall, D., Smith, L. E., & Taylor, J. L. (2014). Postsecondary expectations of high school students with autism spectrum disorders. Focus on Autism and Developmental Disorders. 

Abstract
This study examined the perceptions of adulthood among 31 high-school students with autism spectrum disorder (ASD). We had two research aims: (a) to report students’ postsecondary expectations in terms of school, work, friendships, and living arrangement and (b) to describe how our sample defined adulthood. To better compare our sample’s criteria of adulthood with the criteria traditionally endorsed in secondary schools, we used a directed content analysis approach. Data were derived from a semi-structured interview that questioned students about friendships, activities, and the transition to adulthood. The majority of students expected to attain traditional markers of adulthood after high school. For some the pathways to achieving these outcomes were narrowly defined and perceived as a linear process. Independence, maturity, and personal responsibility were the most highly endorsed characteristics of adulthood, followed by chronological age and traditional markers. Implications for transition planning and adult services are discussed.

McDonald, T. A., & Machalicek, W. (2013). Systematic review of intervention research with adolescents with autism spectrum disorders. Research in Autism Spectrum Disorders, 7(11), 1439–1460. doi:10.1016/j.rasd.2013.07.015

Abstract
A growing body of research provides effective interventions to address the core symptoms of autism spectrum disorders (ASD). However, adolescents with ASDs may face age-specific challenges necessitating the need for contextually relevant and effective interventions. This systematic review examined peer-reviewed intervention research for adolescents (ages 12–21) with ASD. Electronic database searches and ancestral searches were used to identify studies published between 1980 and 2011. 102 studies were identified. A variety of interventions were implemented in these studies to address a wide range of targeted skills and behaviors. Reviewed studies were categorized into seven domains based on the skills and behaviors targeted: (a) social skills; (b) communication skills; (c) challenging behavior; (d) academic skills; (e) vocational skills; (f) independence and self-care; and (g) physical development. Results indicate that effective interventions exist in each  category. These results are discussed in relation to participant characteristics, intervention effectiveness, social validity, generalization and maintenance. Generalization, maintenance, and social validity data were gathered in only 34%, 43%, and 31% of the articles, respectively. Additionally, few studies investigated interventions addressing communication, vocational or academic skills. Recommendations for future research are provided.

McDonald, T. M. (2006) Speech language pathologist preparation: Comparison of autism instruction within communication disorders programs throughout the United States. Ronald E. McNair Scholars Journal, 10, 99-113

Abstract
Due to the rapid increase in autism incidence in the United States, it was deemed imperative to examine whether Speech Language Pathologists (SLP) receive adequate training in autism spectrum disorders (ASD) as communication impairment is a cornerstone to the disorder. A two part study investigated the amount and type of instruction in pre-professional training for Speech Language Pathologists on the topic of Autism Spectrum Disorders (ASD) in order to determine whether instruction was adequate for professionals entering the field to work with autistic clients. Study One found that instruction in autism spectrum disorders was inadequate with over 194 out of 264 institutions (73%) that do not have courses with autism or related terms in the title or course description. Study Two investigated the amount and type of instruction of ASD through self report by department chairpersons in 297 communication disorders departments in the United States. Responding schools varied widely by offering either a myriad of accepted techniques for autism while 42% of responding schools offered no accepted techniques. Although ASD is one of the fastest growing pediatric disorders with language impairment, SLP data suggests that many schools still do not address ASD content in their courses or catalogs. Suggested reasons for these findings are lack of funding to expand program curriculum, lack of trained and experienced professors to cover the material, and insufficient evidence-based/research-based interventions.

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