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Pathological Demand Avoidance (PDA) and alternative explanations: a critical overview
Dr. Damian E M Milton
In this presentation, a critique of PDA narrative and theory is given, examining the PDA behaviour profile and the issue of external as opposed to internal demands. PDA theory is then compared and contrasted with other potential explanations and theories which may relate to this phenomenon - namely ODD, Attachment Disorder, Executive Functioning, Monotropism and Autistic Inertia.
Gender in Autistic Late-Diagnosis Narratives
Kate Ellis
In recent years, the discussion of how gender impacts autism diagnosis has been popular in both academic and lay contexts, such as social media. In psychology, the idea of the Female Autism Phenotype has particularly caught the attention of researchers as a possible explanation for why autistic women and girls are diagnosed later. However, studies related to gender and late autism diagnosis often do not consider how autistic adults personally perceive this link. Using thematic analysis, this study analyzes the blogs of late-diagnosed autistic adults to understand whether and how these individuals perceive a link between their gender and their timing of diagnosis. Critical discourse analysis is also used to understand how understandings of autism, group affiliations, and other factors may influence these perceptions. The study found that while the Female Autism Phenotype and similar theories have been favoured by bloggers in years past, they have not been regularly discussed by late-diagnosed bloggers in recent years. This indicates that autism researchers who focus on gender’s role in late-diagnosis may not be in line with autistic community priorities regarding autism research.
Transformative Somatic Practices and Autistic Potentials: an Autoethnographic Exploration
Dr. Nick Walker
There is a dearth of research and literature on the use of transformative practices by autistic people as a means of pursuing self-actualization and the realization of positive psychospiritual potentials. In this autoethnographic inquiry I examine my experience as an autistic participant in transformative somatic practices, with a focus on my four decades as a student and teacher of aikido and my two decades as a member of an experiential research group exploring movement-oriented ritual as a tool for accessing the realms of the unconscious and the transpersonal. In reflecting upon my experiences, I aim to derive broader insights regarding the ways in which practices like the ones in which I’ve engaged can interact with autistic ways of knowing and being, and regarding the use of such practices toward the realization of autistic potentials and the cultivation of psychospiritual wellbeing and self-actualization in autistic people.
The inquiry is grounded a humanistic perspective and in the neurodiversity paradigm, an emergent framework for research and scholarship that foregrounds the voices and experiences of autistics and other members of neurocognitive minorities. Autoethnography, which utilizes the lived experience of the researcher as a foundation for cultural insight, is a methodology particularly well-suited to v this foregrounding of traditionally marginalized voices. In interpreting my experiences and seeking to glean insight from them, I draw upon multiple bodies of theory and literature; I include a literature review that aims at formulating a coherent picture of the overall nature and distinctive qualities of autistic experience, and the subsequent autoethnographic narrative incorporates theories and concepts from the fields of somatic psychology and humanistic psychology.
I conclude the inquiry with reflections on the implications of my narrative with regard to praxis, and with a discussion of possibilities for future research on autistic participation in transformative practices.
Autistic Authors' Narratives of Trauma and Resilience: A Qualitative Analysis
Tessa Smith
This qualitative dissertation investigates current research gaps regarding autistic individuals’ experience of trauma and resilience in the face of adversity. Specifically, it conceptualizes trauma and resilience through a neurodiverse lens, through identifying themes in memoirs written by five autistic authors related to trauma, potentially traumatic events, resiliency, and posttraumatic growth. Through Interpretive Phenomenological Analysis, I identified individual, interpersonal, and societal factors impacting the memoirists experiences of trauma, through the identification of 11 superordinate themes. Prominent themes at the individual level included self-acceptance and emotion regulation promoting resilience. At the contextual level, sensory processing and uncertainty coincided with experiences of trauma. At the interpersonal level, many memoirists describe interpersonal traumas, including mutual misunderstanding between themselves and others. Finally, at the societal level, themes across the memoirs point to the importance of mental health professional training and awareness regarding autism and expanding our understanding of traumatic experiences. Thus, I propose a sociocultural approach for conceptualizing how autism and trauma intersect. Based on this approach, I advocate for systemic-level changes, community, contextual, and individual interventions to support the resiliency of autistic individuals.
‘There is No Cause, There is No Effect’: Experiences at the Intersection of Transgender and Neurodivergent Identities
Natalie Bornstein
A significant body of clinical research has demonstrated that neurodivergent individuals are more likely than neurotypical individuals to have transgender and/or gender expansive identities (Janssen et al., 2016; Strang et al., 2014; Warrier et al., 2020).
Within this body of research, neurodivergence and transgender identities are commonly mutually pathologized. Existent medico-psychiatric literature has been found to describe neurodivergence and transgender identities as “co-morbidities” and hypothesizes neurodivergence as a “cause” of transgender identity (Shapira & Granek, 2019, p. 506).
A small but growing body of clinical, sociological, and theoretical scholarship has demonstrated the importance of non-pathologizing approaches to mental and physical healthcare for this population, the complexity of neurodivergent and transgender identity construction, and the importance of intra-community solidarity (Egner, 2019; Oswald et al., 2021; Strang et al., 2020). However, little is known about individuals’ internal experience of this phenomenon. iv
The present study utilizes hermeneutic and queer phenomenology to explore transgender and neurodivergent individuals’ experiences and understandings of gender identity and neurodivergence, connections drawn between gender identity and neurodivergence, experiences within broader LGBTQ+ community, and experiences accessing gender-affirming, medical, and mental healthcare.
Participants who identify as both transgender and neurodivergent were recruited via social media and 13 individuals took part in the hour-long semi-structured interview process.
Five essential themes emerged from the data:
(1) fluid and expansive identities,
(2) relationality and identity development,
(3) connections between gender and neurodivergence,
(4) diverse experiences within LGBTQ+ community, and
(5) experiences within the healthcare system. Participant gender and neurodivergent identities were found to be fluid, and identity development and expression were found to be informed by relationships and social dynamics.
All participants drew at least some connections between their gender identities and neurodivergence.
Participant experiences within the broader LGBTQ community included both those of inclusion and exclusion.
Finally, participants did not report ableist discrimination in gender-affirming care settings.
However, all participants reported experiencing transphobia in healthcare settings.
Implications for social work education and practice are presented as well as directions for future research
Neuroqueering Gender: On the intersectionalities of neurodivergent experience and gender identity
Allyson White
In this paper, I argue, in alignment with Autistic scholars such as Remi Yergeau and Nick Walker, that neurodivergent experience is frequently neuroqueer and thereby promotes a readiness to challenge normative social standards through neuroqueer concepts of gender.
This analysis provides person-centered accounts of recent statistics which have found that neurodivergent individuals are more likely to be gender non- conforming than their neurotypical counterparts.
This paper focuses on two key claims.
First, it aligns politically with the neurodivergent movement by asserting that the neurodivergent community is a distinct and valid community united by shared experiences of systemic violence and compulsory neuronormativity.
Second, it argues that membership in this community implies an understanding of the neurodiversity paradigm and a readiness to challenge normative social standards through neuroqueer concepts of gender.
This challenge to neuronormative structures may predispose neurodivergent individuals to deconstruct heteronormative expectations, potentially explaining higher rates of queerness among neurodivergents as a socio-cognitive rather than solely biological phenomenon.
These claims are explored through four main themes:
(1) performance and passing,
(2) transgressing and moving against social norms,
(3) belonging and identity within community, and
(4) a dissociative perspective on gender.
Experiences of autism: Perspectives from adolescents on the autism spectrum
Francoise Ford
Despite the increased prevalence of autism, there are limited data about how adolescents on the autism spectrum experience autism and, in particular, how they respond to receiving an autism diagnosis from an insider perspective. Adolescence can be a very challenging time for people on the autism spectrum as they enter adulthood where increased socialisation and flexible processing styles are required (Bedard & Hecker, 2020; Sharma & Seshadri, 2020; Westhoff et al., 2020). During adolescence, a person is required to construe increasingly unfamiliar social settings and undergo a range of physiological, emotional, and cognitive changes as they attempt to create a personal and social group identity. Ten adolescents with a formal diagnosis of autism, but no intellectual disability (ID), participated in a semi-structured interview and a modified repertory grid technique (RGT) assessment (Kelly, 1955). The RGT was designed to develop insight into their experiences of receiving and having a diagnosis of autism and their perceptions about its influence on the development of their self. A personal construct theory (PCT) approach was adopted to interpret participants’ experiences using Kelly’s 11 corollaries, which describe the various construct types that people use to construe their own realities.
This research also examined the utility of the PCT approach in understanding the participants’ lived experiences. A model is proposed of both vulnerability and protective mechanisms, together with external and internal influences, on the development of the adolescents’ self-identity. Outcomes of the research indicated that whilst the adolescents in this research had high school experiences of bullying, which resulted in isolation, exclusion, and rejection, they also acknowledged that their diagnoses contributed to greater self- awareness and self-acceptance. These findings are significant because the literature revealed that adolescents on the autism spectrum can experience low levels of self- acceptance, a loss of identity, poor mental health outcomes, high rates of suicidality, suicide attempts and death by suicide when compared with their non-ASD same-aged peers (Hirvikoski et al., 2020; Jager‐Hyman et al., 2020; Kirby et al., 2019; Kõlves et al., 2021; White et al., 2017). Most participants recommended increased autism awareness by their peers and teachers, and a need for greater inclusion in the school setting, which suggests that the schools in this research perpetuated a Medical Model of Disability that intensified feelings of difference for these research participants. Despite their self-reported negative experiences of having a diagnosis of autism, participants in this research shared a strong sense of self and perceived their autism to be intrinsically interwoven with their self-identity.
Is Pathological Demand Avoidance a “meaningful subgroup” of autism?
Richard Woods
Pathological Demand Avoidance (PDA) is a proposed Mental Disorder, from Elizabeth Newson, in the United Kingdom. While excluded from the two main diagnostic manuals, PDA has garnered much interest and controversy. While originally viewed as a new type of syndrome, a Pervasive Developmental Coding Disorder. Presently there is much focus on PDA as an Autism Spectrum Disorder (ASD), that ignores broader discussions around how PDA should be clinically viewed. Due to arguments against doing that in favour of diagnosing PDA as an ASD. Charting the history of PDA from Newson’s research, through to how four main divergent schools of thought developed. From PDA being viewed as rebranded autism through to symptoms resulting from the interaction between autism and common co-occurring conditions. Conceptualising PDA as a common mental disorder best conforms to Newson’s opinions and research. Various empirical research supports this outlook. PDA can be diagnosed and researched independently of autism. Such an approach is needed to allow its full nature to become clear through scientific-method research.
Diagnosis of Co-occurring Autism and Attention Deficit Hyperactivity Disorder
Willow Sainsbury
Autism and attention deficit hyperactivity disorder (ADHD) both have onset in early childhood and have multifaceted lifelong effects. The two conditions are separated by different core behavioural symptoms and clinical management. However, autism and ADHD have significant co-occurrence rates. Both autism and ADHD are associated with social differences, high sensory needs, attention difficulties and increased co-occurrence with other conditions. This has resulted in debate about whether autism and ADHD should be viewed as one condition on a gradient or as two separate conditions. Regardless of such the taxonomic classification issues, it appears that, in those children most affected by autism + ADHD characteristics, there are additive challenges across the behavioural and cognitive domains associated with both conditions.
Autistic and ADHD children both benefit from early support, which can reduce some of the negative outcomes associated with these conditions. However, the opportunities to access early support during a sensitive developmental period are reduced by the delayed diagnosis of autism that happens when ADHD co-occurs. A literature review conducted as part of this thesis established that this delay is observed across international jurisdictions. The literature review also demonstrated that there is evidence for an earlier ADHD diagnosis when autism is present. There was also some limited evidence for later age of parental first concern and longer wait time to diagnosis for the autism + ADHD group. Other characteristics which further exacerbated the delay were being female and an ADHD diagnosis being given before the autism diagnosis.
The literature review indicated an international pattern in delayed diagnosis of autism for autistic + ADHD children and that there did not appear to be any studies examining the diagnostic pathway for these children in New Zealand. Therefore, understanding whether this delay is relevant for autistic + ADHD children in New Zealand is an important area of study. As is a further understanding of the mechanism by which autism + ADHD children might present differently to children with a singular diagnosis of either autism or ADHD. Variables indicated by the literature review, such as wait time to diagnosis and age of parental first concern, were also explored as possibly contributing to delay in autism diagnosis when ADHD was present. In the first study of this thesis, 288 New Zealand parents of children diagnosed with autism (n = 111), ADHD (n = 93), or both conditions (n = 84) participated in an online survey. The results indicated that co-occurring autism and ADHD was associated with an earlier ADHD diagnosis and a later autism diagnosis in New Zealand, thus fitting the international trend. Parents of children with both diagnoses reported less atypical development in language and social behaviours compared to parents of autistic children. The co-occurring group also experienced longer times to diagnosis, and saw more types of specialists prior to a diagnosis than those with autism.
The experience of parents might also enhance an understanding of delays and challenges in the diagnostic process. Therefore, the second study of this thesis used qualitative reflexive-thematic analysis to understand the experiences of parents on their journey to diagnosis for their children. The findings suggest that parents view the process to diagnosis as an adversarial one, which required extensive knowledge, finances, and network resources. Parents also described a second ‘battle’, which was often unexpected, to get support for their child post-diagnosis. Parents identified that the relief of the removal of parenting guilt and blame, as well as situating the issue outside of the child, was an important part of the diagnosis label.
The literature review and both studies one and two indicated that the diagnostic process for autism + ADHD is complex. In the final study, these complexities were further explored by an anonymous online survey of clinicians' (psychologists, paediatricians, psychiatrists) responses (n = 29) to two complex neurodevelopmental cases described in vignettes. These vignette cases included autism + ADHD characteristics and a number of other co-occurring characteristics. Clinicians reported multiple possible lines of inquiry including specific assessments for particular hypothesised diagnoses and more general assessments. The results of this study suggested that complex cases require lengthy consideration and multiple resources.
The thesis identified and elucidated the phenomena in the timing of diagnosis when autism and ADHD co-occur. This included understanding the delay in autism diagnosis when ADHD is present and provided possible evidence for where along a diagnostic pathway such a delay might be occurring. A biopsychosocial framework was also used to consider multiple psychological and social aspects of this process including the experiences of complex neurodevelopmental cases for families and clinicians. The experience for families and clinicians grappling with an imperfect diagnostic model suggests that multiple resources, time delays and stressful situations are common. This thesis concludes with theoretical and practical recommendations for an improved diagnostic pathway and experience for clinicians and families.
Emotion Regulation and Executive Function in Children and Adolescents with Autism Spectrum Disorder and Pathological Demand Avoidance Traits
Anna Goodson
Aims:
Pathological Demand Avoidance (PDA) is an increasingly used label that describes a subset of children diagnosed with Autism Spectrum Disorder (ASD) who display extreme behaviours in response to everyday demands. To date, little is known about the cognitive profiles associated with these behaviours. The aim of this study was to investigate the potential role of parent-reported Executive Function (EF) in PDA traits in the context of ASD, with a particular focus on emotion dysregulation and non-compliance behaviour.
Methods:
Sixty-four parents of children with ASD and 31 parents of children without ASD, aged between 6-11 years old, were recruited to complete questionnaires at a single time point. Questionnaires assessed ASD traits, PDA traits, EF, non-compliance behaviours, and emotion dysregulation.
Results:
Group differences in parent-reported EF were found, with children with ASD showing greater deficits than children without ASD. EF was significantly related to global PDA traits in the context of ASD, as well as to dimensional measures of specific associated behaviours such as emotional dysregulation and behavioural non-compliance. Executive Function accounted for a significant proportion of the variance (r2 = 34%) in PDA traits. Indices of EF were found to differentially predict non-compliance behaviours and ASD traits confounded some of these relationships.
Conclusion:
These findings suggest that a range of EF deficits may contribute to PDA behaviours in children with ASD. Evidence for differential involvement of EF in PDA traits suggests that further exploration using more direct measures of EF is warranted to gain a clearer understanding of this relationship, which could benefit interventions and behavioural strategy development
Working memory and social competence in individuals with attention-deficit/hyperactivity disorder (ADHD) symptoms and autism spectrum disorder (ASD) traits
Kristin E. Austin
Attention Deficit/Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD) are heterogeneous neurodevelopmental disorders with similar functional impairments. Specifically, working memory (WM) deficits have been found in studies of both ADHD and ASD and social competence has been identified as an area in which these individuals also struggle. The purpose of this study was (a) to identify which components of working memory (WM; based on Baddeley's 2000 model) are deficient and (b) to explore how WM deficits contribute to social problems in individuals with varying levels of ADHD symptoms and ASD traits. It was hypothesized that visuospatial (VS) WM deficits would be evident in the three analogue clinical groups, phonological (PH) WM and central executive (CE) deficits would be more evident in groups with high ADHD symptoms, all three analogue clinical groups would have lower social competence, and WM abilities would moderate the relationship between ADHD symptoms and social competence. In Phase I, 1311 undergraduate students participated in an online survey on general psychopathology, ADHD symptoms, and ASD traits. From this sample, a subgroup (n = 60) completed Phase II, an in-lab session that included WM tasks, a brief cognitive assessment, and social conversation task. Although WM deficits were not identified for any group, all participants demonstrated worse performance on the VS WM task than the PH WM task. However, WM abilities did not moderate the relationship between ADHD symptoms and social competence. Exploratory analyses were conducted with similar results. Limitations and suggestions for future research are discussed.
Biomarkers of ADHD and ASD: Insight into Comorbid ADHD+ASD
Lisa De Stefano
Attention-deficit hyperactivity disorder (ADHD) and Autism spectrum disorder (ASD) are two of the most common neurodevelopmental disorders found in children and they show significant symptom overlap. Because both disorders are diagnosed based on behavioral observation, inferring which disorder (or combination of disorders) is causing symptoms in an individual child can be challenging for clinicians, particularly when an individual shows behaviors consistent with comorbid ASD+ADHD. The current study examined resting electroencephalography (EEG), as well as task-related EEG and behavior during a modified flanker task in 50 children (aged 6-12) with either a diagnosis of ADHD (n=17), ASD (n=5), both (comorbid ADHD+ASD, COM; n=8), or no clinical diagnosis (typically developing control, TDC; n=20). EEG and behavioral analyses began by comparing a set of features that have previously been used to discriminate single disorders from TDC. Next, the data from TDC and children with a single diagnosis (ASD-only, ADHD-only) were submitted to k-means cluster analysis to evaluate data-driven subgroups regardless of diagnosis. After recovery of the optimal number of clusters (3), the data from COM participants were sorted into the cluster in which they best fit. While none of the regularities found in the literature properly explain the relationships between ADHD, ASD, and COM participants, the use of cluster analysis suggested potential phenotypes that differ in Stimulus Engagement and Feedback Responsivity. These dimensions may have bearing on the efficacy of treatments that target dopaminergic systems, such as methylphenidate. Methods such as these may give insight into the neurobiological underpinnings of an individual’s symptoms, which has the potential to guide decisions about appropriate pharmacological treatment and behavioral interventions.
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