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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.
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.
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
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.
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.
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.
tamcdonald.org 