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Toward a Neuroqueer Future: An Interview with Nick Walker
Nick Walker, PhD, and Dora M. Raymaker, PhD
Abstract
In this interview, Autism in Adulthood’s Associate Editor Dora M. Raymaker interviews
Nick Walker about the state of neurodiversity scholarship and practice, past, present, and
future.
Nick Walker is a queer autistic professor of psychology, a cofounder of the worker-
owned publishing house Autonomous Press, a longtime participant in autistic culture whose
ideas have influenced the emergent fields of neurodiversity studies and critical autism
theory, and a transdisciplinary scholar whose work explores the intersections of neurodi-
versity, embodiment, queer theory, and transformative practice.
Raymaker and Walker conducted the original interview through e-mail; Raymaker then added citations, formatting, and light copy editing.
Neurodivergence-informed therapy
Chapman, R. and Botha, M.
Abstract
The neurodiversity movement is a social movement that emerged among autistic self-advocates. It has since spread and has been joined by many with diagnoses of attention-deficit/hyperactivity disorder, dyslexia, and developmental coordination disorder among others.
By reconceptualizing neurodiversity as part of biodiversity, neurodiversity proponents emphasize the need to develop an ‘ecological’ society that supports the conservation of neurological minorities through the construction of ecological niches—that is, making space for all.
This is an alternative to the drive to eliminate diversity through attempts to ‘treat’ or ‘cure’ neurodivergence. So far, neurodiversity theory has not been formally adapted for psychotherapeutic frameworks, and it is not the role of the therapist to make systemic changes to societal organization.
Still, there is room for fruitfully drawing on a neurodiversity perspective for therapists working with neurodivergent people in clinical settings.
Here, we draw on the example of autism and synthesize three key themes to propose the concept of neurodivergence-informed therapy.
First, the reconceptualization of dysfunction as relational rather than individual.
Second, the importance of neurodivergence acceptance and pride, and disability community and culture to emancipate neurodivergent people from neuro-normativity.
Third, the need for therapists to cultivate a relational epistemic humility regarding different experiences of neurodivergence and disablement.
Individually tailored dosage regimen of full-spectrum Cannabis extracts for autistic core and comorbid symptoms: a real-life report of multi-symptomatic benefits
Patrícia Soares Silva Montagner, Wesley Medeiros, Leandro Cruz Ramires da Silva, Clarissa Nogueira Borges, Joaquim Brasil-Neto, Vinícius de Deus Silva Barbosa, Fabio V. Caixeta, Renato Malcher-Lopes
Abstract
Autism Spectrum Disorders (ASD) may significantly impact the well-being of patients and their families.
The therapeutic use of cannabis for ASD has gained interest due to its promising results and low side effects, but a consensus on treatment guidelines is lacking.
In this study, we conducted a retrospective analysis of 20 patients with autistic symptoms who were treated with full-spectrum cannabis extracts (FCEs) in a response-based, individually-tailored dosage regimen.
The daily dosage and relative proportions of cannabidiol (CBD) and tetrahydrocannabinol (THC) were adjusted based on treatment results following periodic clinical evaluation.
Most patients (80%) were treated for a minimum of 6 months.
We have used a novel, detailed online patient- or caregiver-reported outcome survey that inquired about core and comorbid symptoms, and quality of life.
We also reviewed patients’ clinical files, and no individual condition within the autistic spectrum was excluded.
This real-life approach enabled us to gain a clearer appraisal of the ample scope of benefits that FCEs can provide for ASD patients and their families.
Eighteen patients started with a CBD-rich FCE titrating protocol, and in three of them, the CBD-rich (CBD-dominant) FCE was gradually complemented with low doses of a THC-rich (THC-dominant) FCE based on observed effects.
Two other patients have used throughout treatment a blend of two FCEs, one CBD-rich and the other THC-rich.
The outcomes were mainly positive for most symptoms, and only one patient from each of the two above-mentioned situations displayed important side effects one who has used only CBD-rich FCE throughout the treatment, and another who has used a blend of CBD-Rich and THC-rich FCEs.
Therefore, after FCE treatment, 18 out of 20 patients showed improvement in most core and comorbid symptoms of autism, and in quality of life for patients and their families.
For them, side effects were mild and infrequent.
Additionally, we show, for the first time, that allotriophagy (Pica) can be treated by FCEs.
Other medications were reduced or completely discontinued in most cases.
Based on our findings, we propose guidelines for individually tailored dosage regimens that may be adapted to locally available qualified FCEs and guide further clinical trials.
A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults
Mason, D., Ingham, B., Urbanowicz, A., Michael, C., Birtles, H., Woodbury-Smith, M., Brown, T., James, I., Scarlett, C., Nicolaidis, C. and Parr, J.R.
Abstract
Autistic people are more likely to: be diagnosed with a range of physical health conditions (i.e. cardio-vascular disease); experience premature mortality (for most disease categories); and experience barriers to effectively accessing healthcare.
This systematic review sought to identify studies that report on barriers and facilitators to physical healthcare access for autistic people.
A total of 3111 records were screened and six studies were included: two quantitative, two qualitative, and two mixed-methodology studies.
Patient-provider communication, sensory sensitivities, and executive functioning/planning issues emerged as important barriers to healthcare.
Recommendations for clinicians and those planning services are discussed.
The Meltdown Pathway: A Multidisciplinary Account of Autistic Meltdowns
Paul Anthony Soden, Anjali Bhat, Adam K Anderson, Karl Friston
Abstract
Autistic meltdowns are involuntary fits of intense frustration, rage, and often physical violence elicited by sensory and cognitive stressors easily tolerated by neurotypicals. While nearly 70% of autistic individuals display the “crisis behaviors” associated with meltdowns, the neural mechanisms that underlie this maladaptive response are not yet well understood. This has thus far hampered progress towards a dedicated therapeutic intervention–beyond traditional medications—that limits their frequency and severity. Here, we aim to initiate an interdisciplinary dialogue on the etiology of meltdowns. In doing so, we frame meltdowns as a consequence of underlying chronic hypervigilance and acute hyperreactivity to objectively benign stressors driven by differences in the insular cortex—a multimodal integration hub that adapts autonomic state and behavior to meet environmental demands. We first discuss meltdowns through the lens of neurophysiology and argue that intra-insular hypoconnectivity engenders vagal withdrawal and sympathetic hyperarousal in autism, driving chronic hypervigilance and reducing the threshold of stressors those with autism can tolerate before experiencing a meltdown. Next, we turn to neuropsychology and present evidence that meltdowns reflect an inability to properly integrate contextual evidence, particularly social cues, when acutely assessing ambiguous signs of danger in the environment—a process termed neuroception. Finally, we build on contemporary predictive coding accounts of autism to argue that meltdowns are ultimately driven by chronic failures of sensory attenuation and coherent deep inference within the interoceptive hierarchy, possibly linked to oxytocin deficiency during infancy. Throughout, we synthesize each perspective to construct a multidisciplinary, insula-based model of meltdowns.
Understanding the associations between social and emotional expression, communication, and relationships in individuals with eating pathology
Alyssa Daniels, Talea Cornelius, Amy A. Gorin
Abstract
Research suggests that a disproportionate number of female individuals being treated for an eating disorder (ED) also have autism spectrum disorder (ASD). Alexithymia, or difficulty identifying and describing emotions, may mediate the relationship between ED and ASD. In this study, we explored the association of autistic traits with symptoms of alexithymia and eating pathology, as well as the potential mediating role of alexithymia. Two hundred and twenty‐eight female participants aged 18 and older were recruited from online ED support platforms to complete an anonymous online survey via Qualtrics. The survey included three questionnaires: the Toronto Alexithymia Scale‐20, the Autism‐Spectrum Quotient (AQ), and the 13‐item Eating Disorder Examination Questionnaire. More than half (54.8%) of participants met the clinical threshold on the AQ. Participants with a positive screen on the AQ scale also reported more symptoms of alexithymia (92.6% of individuals with a positive AQ vs. 79.8% of those without), B = 9.02, p < 0.001. A positive AQ screen was also associated with significantly greater disordered eating symptoms, B = 4.26, p = 0.031. Alexithymia mediated this association, a × b = 1.98, p
Gender Variance Among Youth with Autism Spectrum Disorders: A Retrospective Chart Review
Janssen, A., Huang, H. and Duncan, C.
Abstract
Purpose:
Increasing clinical evidence suggests an overrepresentation of gender variance (GV) among patients with autism spectrum disorders (ASDs). This retrospective chart review aims to contribute to the existing literature on co-occurring ASD and gender dysphoria (GD). We compare the rate of parent-reported GV in patients with an ASD diagnosis to that of parent-reported GV in a normative nonreferred data set.
Methods:
Child Behavior Checklist (CBCL) charts were collected from 492 children and adolescents (409 natal males and 83 natal females) aged 6–18 years who have received a diagnosis of ASD at the New York University Child Study Center. Parent-reported GV was determined through endorsement of CBCL sex item 110, which assesses the presence of gender-related issues. We calculated the odds ratio of endorsement of item 110 between our ASD sample and the CBCL sample data.
Results:
The subjects diagnosed with ASD were 7.76 times more likely to report GV than the CBCL sample. This finding was statistically significant. About 5.1% of the patients in the ASD group and 0.7% of the CBCL nonreferred group endorsed sex item 110. 5.1% of natal males and 4.8% of natal females endorsed sex item 110. Neither gender nor age influenced the rate of endorsement.
Conclusion:
This finding supports the growing research suggesting a heightened co-occurrence rate of ASD and GD. Focus should be placed upon improving our understanding of the nature of this co-occurrence and on gender identity development within the atypical development of ASD.
Quality of life, gastrointestinal symptoms, sleep problems, social support, and social functioning in adults with autism spectrum disorder
Geraldine Leader, Amy Barrett, Chiara Ferrari, Mia Casburn, Leanne Maher, Katie Naughton, Sophia Arndt, Arlene Mannion
Abstract
Background
The purpose of this study was to investigate the relationship between sleep problems, gastrointestinal symptoms, social functioning, autism traits, and social support on quality of life (QoL) in 107 adults with autism spectrum disorder (ASD).
Method
Questionnaires included the Autism Spectrum Quotient-10 (Adult), Multidimensional Scale of Perceived Social Support, Social Functioning Questionnaire, Pittsburgh Sleep Quality Index, Gastrointestinal Symptom Inventory, and World Health Organization Quality of Life-BREF.
Results
GI symptoms were a common comorbidity with 86 % of participants presenting with them.
Sleep problems were also frequent issues with 89 % of participants being classified as poor sleepers.
Greater sleep problems were correlated with poorer QoL in the physical health and environment domains.
Specifically, the sleep problem of daytime dysfunction was correlated with poorer QoL in physical health.
Daytime dysfunction and sleep duration were correlated with poorer QoL in the environment domain.
Better social support was correlated with greater QoL in the psychological, social and environment domains.
Poorer social functioning was correlated with poorer QoL in each of the four domains.
Conclusion
This research indicated that GI symptoms and sleep problems are common comorbid conditions in the adult ASD population.
This paper expanded upon the existing literature by highlighting unexplored factors influencing QoL in adults with ASD.
Sensory processing subtypes relate to distinct emotional and behavioral phenotypes in a mixed neurodevelopmental cohort
Annie Brandes-Aitken, Rachel Powers, Jamie Wren, Robyn Chu, Kevin A. Shapiro, Mary Steele, Pratik Mukherjee & Elysa J. Marco
Abstract
Children with autism and other neurodevelopmental concerns (NDC) frequently exhibit an array of sensory processing dysfunction phenotypes, posing a significant challenge their adaptive development. Additionally, these children often encounter difficulties with self-regulation, including emotion dysregulation, anxiety, and symptoms associated with attention and hyperactivity. However, further research is required to comprehend how patterns of sensory processing differences across neurodevelopmental conditions may contribute to regulatory control problems.
Adopting a transdiagnostic perspective within the Research Domain Criteria (RDoC) framework, this study examined the relationship between clusters of sensory processing phenotypes and differential patterns of self-regulation behaviors. We recruited a sample of 117 participants (8–12 years) with a diverse range of neurodevelopmental concerns including autism, ADHD, anxiety, and sensory processing differences.
This study aimed to:
(1) establish the prevalence of self-regulation problems in a community-recruited cohort of children with diverse NDCs;
(2) construct data-driven sensory processing latent subtypes;
(3) investigate group differences in emotion dysregulation, anxiety, and ADHD symptoms.
Results showed that 39% of NDC children met clinically concerning thresholds for emotion dysregulation, 19% for anxiety, and 62% for ADHD. Second, latent profile analysis identified five sensory processing subtypes categorized by modality: Typical Processing, Intermediate/Mixed, Sensory Over-Responsive, Sensory Seeking, and Sensory Under-Responsive. Notably, the Sensory Over-Responsive group exhibited distinctively elevated anxiety scores, while the Sensory Seeking and Sensory Under-Responsive groups showed heightened ADHD scores. Intriguingly, the Sensory Over-Responsive, Sensory Under-Responsive, and Sensory Seeking subgroups all demonstrated elevated emotion dysregulation scores, suggesting a potential shared mechanism of emotion dysregulation that might elucidate the connection between sensory processing differences and increased anxiety and ADHD behaviors in children with autism and other NDCs.
“I was always on the outside, watching quietly”: Autistic women reflect on school experiences
Jessica Curd & Thu Sương Thị Nguyễn
Abstract
Voices of autistic women and girls have historically been absent from research. Even now, there is limited knowledge about the experiences of autistic girls and women, particularly in the school setting. To address this gap, this phenomenological study explored a broad range of school experiences for autistic women, from kindergarten through college. Interviews of 6 participants were conducted through a pilot study to inform the development of the interview protocol and process. A total of 14 autistic women participated in the full study, which also included the initial 6 from the pilot. Interviews were audio recorded and transcribed. Two researchers independently analyzed the data to identify themes using thematic analysis. Six themes were identified: (1) Accuracy of diagnosis matters; (2) Details matter; (3) Meaning of sensory and emotional experiences; (4) Invisibility/Not belonging; (5) Relationship and friendship challenges; (6) Layers of vulnerability. We identify recommendations for educators, administrators, counselors, and school social workers.
Prevalence of Premenstrual Syndrome in Autism: A Prospective Observer-rated Study
Dr H Obaydi, BK Puri
Abstract
A systematic, prospective observer-rated study was carried out to determine the prevalence of late luteal phase dysphoric disorder (premenstrual syndrome) in women with autism. A group of women with autism and learning disability (n = 26) was compared with a group of women with a non-autism learning disability (n = 36) matched for age, in-patient status, intelligence, marital status, parity, behavioural problems and ethnicity. Observers rated DSM-IV symptoms of late luteal phase dysphoric disorder every day from each subject over three consecutive menstrual cycles. Using a premenstrual increase in DSM-IV symptoms of ≥ 30% as evidence of fulfilment of diagnostic criteria, the prevalence of late luteal phase dysphoric disorder was 92% in the autism group compared with 11% in the control group. This difference was highly statistically significant. The principal conclusion from this study is that there is a marked increase in premenstrual syndrome in women with autism compared with matched controls.
Atypical connectivity aids conversation in autism
Kyle Jasmin, Alex Martin & Stephen J. Gotts
Abstract
It is well-established that individuals with autism exhibit atypical functional brain connectivity. However, the role this plays in naturalistic social settings has remained unclear. Atypical patterns may reflect core deficits or may instead compensate for deficits and promote adaptive behavior. Distinguishing these possibilities requires measuring the ‘typicality’ of spontaneous behavior and determining how connectivity relates to it. Thirty-nine male participants (19 autism, 20 typically-developed) engaged in 115 spontaneous conversations with an experimenter during fMRI scanning. A classifier algorithm was trained to distinguish participants by diagnosis based on 81 semantic, affective and linguistic dimensions derived from their use of language. The algorithm’s graded likelihood of a participant's group membership (autism vs. typically-developed) was used as a measure of task performance and compared with functional connectivity levels. The algorithm accurately classified participants and its scores correlated with clinician-observed autism signs (ADOS-2). In support of a compensatory role, greater functional connectivity between right inferior frontal cortex and left-hemisphere social communication regions correlated with more typical language behavior, but only for the autism group. We conclude that right inferior frontal functional connectivity increases in autism during communication reflect a neural compensation strategy that can be quantified and tested even without an a priori behavioral standard.
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