top of page
Journal Articles
Filter by Keyword
Transgender and gender diverse autistic adults' experiences of (un)belonging
Katie Munday, Steven K. Kapp, Charlotte Morris
Abstract
Clinical impressions suggest a significant overlap of autistic as well as transgender and gender diverse (TGD) identities, implying a need for research that explores TGD autistic experiences in greater depth, including experiences of (un)belonging. We shared trans and gender diverse autistic adults' experiences of belonging and unbelonging to contribute to knowledge around their lived experiences. We present findings from biographical narrative interpretive interviews with thirteen TGD autistic people (aged 20–50). We used reflexive thematic analysis to generate themes across three levels of belonging: macro, encompassing work and volunteering; meso, including education, gender identity healthcare, and neurodivergent groups and spaces; and micro, including relationships and creating chosen families. Participants faced workplace exclusion and healthcare gatekeeping, often turning to self-employment or community spaces for inclusion. Chosen families and communal living were key sources of affirmation and support for participants, highlighting how belonging for TGD autistic people can be shaped through intersecting structural, social, and interpersonal factors.
Research-Based Strength-Based Teaching and Support Strategies for Twice-Exceptional High School Students with Autism Spectrum Disorder
Sally M Reis, Sara J Renzulli
Abstract
In the last five years, several scholars have collaborated in an integrated research program focused on students identified with both academic talents and autism spectrum disorder (2eASD) with support from a Javits Gifted and Talented Students Education grant. Several different empirical studies were initiated and completed during this period, investigating the ways in which some of these twice-exceptional students have been able to be successful in secondary school and highly competitive colleges. In this article, we summarize findings from several of these studies, synthesizing implications and recommendations with a goal of offering research-based practices, especially related to healthy social and emotional development and strong academic achievement in students identified as 2eASD.
Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice
Kathy Leadbitter, Karen Leneh Buckle, Ceri Ellis, Martijn Dekker
Abstract
The growth of autistic self-advocacy and the neurodiversity movement has brought about new ethical, theoretical and ideological debates within autism theory, research and practice. These debates have had genuine impact within some areas of autism research but their influence is less evident within early intervention research. In this paper, we argue that all autism intervention stakeholders need to understand and actively engage with the views of autistic people and with neurodiversity as a concept and movement. In so doing, intervention researchers and practitioners are required to move away from a normative agenda and pay diligence to environmental goodness-of-fit, autistic developmental trajectories, internal drivers and experiences, and autistic prioritized intervention targets. Autism intervention researchers must respond to these debates by reframing effectiveness, developing tools to measure autistic prioritized outcomes, and forming partnerships with autistic people. There is a pressing need for increased reflection and articulation around how intervention practices align with a neurodiversity framework and greater emphasis within intervention programmes on natural developmental processes, coping strategies, autonomy, and well-being.
Neurobiological insights into twice-exceptionality: Circuits, cells, and molecules
Benjamin A. Kelvington, Thomas Nickl-Jockschat, Ted Abel
Abstract
This article explores the neurobiological aspects of twice-exceptionality (2e), where individuals exhibit exceptional talents alongside disabilities. It discusses how distinct neural circuits and neuroplasticity may contribute to the unique learning profiles of 2e learners, emphasizing the need for further research in this area. Understanding these neurobiological mechanisms could enhance support for 2e individuals by identifying their strengths and addressing their challenges.
Examining the Link Between ADHD Symptoms and Menopausal Experiences.
Lauren Chapman, Kanak Gupta, Myra S Hunter, Eleanor J Dommett
Abstract
Objectives: Interest in the role of female hormones in ADHD has grown in recent years and, with an increasing number of women diagnosed with ADHD later in life, it is important hormonal changes across the lifespan are considered. This exploratory study examines the relationships between ADHD status (diagnosis and medication use) and symptoms, and menopause stage (pre/peri/post) and symptoms. Methods: Employing a cross-sectional approach, we recruited a sample of 656 women aged 45 to 60 years, of which 245 had an existing diagnosis of ADHD. Women completed several questionnaires assessing their ADHD symptoms (Adult Self-Report Scale, ASRS) and menopausal experiences (Women's Health Questionnaire, WHQ; Menopause-Specific Quality of Life Questionnaire, MENQoL; Hot Flush Rating Scale, HFRS; Hot Flush Related Daily Interference Scale, HFDIS). Results: ANCOVA revealed no significant effects of an ADHD diagnosis or interaction effects between diagnosis and menopause stage after applying an FDR correction. Similarly, when medication was considered (i.e., non-ADHD, ADHD with medication, and ADHD without medication) there were no main effects of group or interaction effects with menopause stage. Conclusions: These results indicate women with ADHD do not experience greater menopausal complaints than women without at any menopausal stage. However, there were significant correlations between ADHD symptoms and menopausal complaints across all participants but at a group level, these were less prominent in those with ADHD, which could indicate different attribution of symptoms in women with ADHD. Future research should further explore menopause in women with ADHD considering longitudinal designs and qualitative studies to examine potential overlap of symptoms and symptom attribution.
Prevalence and correlates of psychiatric comorbidities in children and adolescents with full and subthreshold avoidant/restrictive food intake disorder
P. Evelyna Kambanis, Kuhnle, M.C., Wons, O.B., Jo, J.H., Keshishian, A.C., Hauser, K., Becker, K.R., Franko, D.L., Misra, M., Micali, N., Lawson, E.A., Eddy, K.T. and Thomas, J.J.
Abstract
Objective:
We aimed to characterize the current and lifetime prevalence of comorbid psychiatric diagnoses and suicidality in treatment- and nontreatment-seeking individuals with full and subthreshold avoidant/restrictive food intake disorder (ARFID). We also sought to examine unique associations between the three DSM-5 ARFID profiles (i.e., sensory sensitivity, fear of aversive consequences, and lack of interest in food or eating) and specific categories of psychiatric diagnoses and suicidality.
Method:
We conducted structured clinical interviews with 74 children and adolescents with full or sub threshold ARFID to assess the presence of comorbid psychiatric diagnoses, suicidality, and the severity of each of the three ARFID profiles.
Results:
Nearly half of the sample (45%) met criteria for a current comorbid psychiatric diagnosis, and over half (53%) met criteria for a lifetime comorbid diagnosis. A total of 8% endorsed current suicidality and 14% endorsed lifetime suicidality. Severity in the sensory sensitivity profile was uniquely associated with greater odds of comorbid disorders in the neurodevelopmental, disruptive, and conduct disorders category; the anxiety, obsessive-compulsive, and trauma-related disorders category; and the depressive and bipolar-related disorders category. Severity in the fear of aversive consequences profile was associated with greater odds of disorders in the anxiety, obsessive-compulsive, and trauma-related disorders category.
Discussion:
Our findings underscore the severity of psychopathology among individuals with ARFID and related presentations, and also highlight the potential that shared psychopathology between specific ARFID profiles and other psychiatric disorders represent transdiagnostic constructs (e.g., avoidant behavior) that may be relevant treatment targets.
Alexithymia Is Associated With a Multidomain, Multidimensional Failure of Interoception: Evidence From Novel Tests
Jennifer Murphy, Caroline Catmur, Geoffrey Bird
Abstract
Autistic people experience heightened rates of physical health problems but may also experience elevated levels of somatic symptoms (e.g. pain, headache, gastrointestinal symptoms) due to psychological factors which are common in autism.
This online study sought to compare rates of somatic symptoms (Patient Health Questionnaire-15) in older adolescents and adults who were autistic (n = 51), non-autistic (n = 119) and who suspected they were autistic (n = 32), while controlling for health conditions.
We investigated psychological risk factors that may predispose individuals to experience somatic symptoms, including alexithymia (General Alexithymia Factor Score), interoception (Body Awareness Questionnaire) and intolerance of uncertainty (Intolerance of Uncertainty Scale).
Diagnosed autistic individuals had higher rates of alexithymia and intolerance of uncertainty.
We also found higher somatic symptoms in diagnosed autistic individuals, controlling for mental and physical health.
However, hierarchical regression showed that somatic symptoms were predicted by physical and mental health conditions, female gender, alexithymia, and intolerance of uncertainty, regardless of autism status.
The results suggest that autistic and non-autistic individuals experience more bodily discomfort in part due to gender, physical and mental health, alexithymia, and difficulty tolerating uncertainty.
Implications for mental and physical health care in autism are discussed.
Autistic people have more physical health problems than non-autistic people.
We were interested in whether autistic people experience more discomfort in their bodies than non-autistic people and whether certain psychological traits contribute to that.
A survey was completed online by older adolescents and adults, 51 of whom were autistic, 32 of whom thought they might be autistic but were not diagnosed and 119 who were not autistic.
They completed measures of somatic symptoms (daily experience of pain, discomfort, dizziness), alexithymia (difficulty identifying and expressing feelings), interoception (how much people are aware of their bodies) and intolerance of uncertainty (how people handle doubt or uncertainty), and reported any physical or mental health conditions.
We found that the autistic participants had more physical and mental health conditions than the non-autistic participants, but even when we took account of this, they experienced higher levels of somatic symptoms.
We looked at which psychological factors influenced levels of somatic symptoms across the whole sample, and found that alexithymia, intolerance of uncertainty, having physical health problems, being female and the number of mental health conditions predicted somatic symptoms, while interoception and autism diagnosis did not.
The findings suggest that people may be more likely to experience physical discomfort if they are female, and have difficulty identifying and expressing feeling and difficulty tolerating doubt.
As these psychological factors are more prominent in autism, we think this is important for physical and mental health providers to know about, so that these psychological factors can be considered when assessing and treating autistic people.
Long-term medication for ADHD and development of cognitive functions in children and adolescents
Mats Johnson, Jakob Åsberg Johnels, Sven Östlund, Katarina Cedergren, Zerina Omanovic, Kerstin Hjalmarsson, Klara Jakobsson, Jenny Högstedt, Eva Billstedt
Abstract
Objective:
Long-term effects of ADHD medication on cognitive functions are not well known. This study investigates development of cognitive functions and ADHD symptoms on well-controlled medication for 1 year in children and adolescents.
Study design:
This study is part of an ongoing open uncontrolled trial of long-term medication for ADHD in children and adolescents aged 6–18 years with any form of ADHD, and frequently comorbid autism spectrum disorder (ASD, 29%) or autistic traits (24%). Other comorbidities were oppositional defiant disorder, dyslexia/language disorder, borderline intellectual functioning, developmental coordination disorder. This analysis includes 87 participants (61 boys, 26 girls) who completed Wechsler tests at baseline and after 12 months. ADHD symptoms were investigator-rated on the ADHD Rating Scale-IV at the same time points.
Results:
The whole group of children and adolescents showed significant improvements in Wechsler Full Scale IQ (FSIQ, mean at baseline 92.6, at 12 months 97.95), and on the Index Scales Verbal Comprehension, Working Memory and Processing Speed, after one year of well-controlled ADHD medication. Comorbid dyslexia/language impairment predicted a larger rise in FSIQ, but not gender, ADHD presentation or comorbid ASD. Robust improvements in ADHD symptoms were observed (mean ADHD-Rating Scale score at baseline 34.6, and at 12 months 18.3).
Conclusions:
Cognitive test scores and ADHD symptoms were improved on well-controlled medication for 1 year in children and adolescents with ADHD, autism and other comorbidities. The main study limitation is the open uncontrolled trial design.
A perfect storm: Autistic experiences of menopause and midlife
Miranda J Brady, Christine A Jenkins, Julie M Gamble-Turner, Rachel L Moseley, Margaret Janse van Rensburg, Rose J Matthews
Abstract
Previous research indicates that menopause can be an extremely difficult transition for some autistic people.
This study asks how autistic people experience menopause and how they can better access services, support and information; autistic Community Research Associates played an important role in each stage of the research.
Online focus groups and interviews were conducted with 24 autistic participants who lived in Canada (n = 13) or the United Kingdom (n = 11) and had experience with the menopausal transition.
Transcripts were coded and analysed by four team members using reflexive thematic analysis.
Four themes and eight subthemes were identified:
(1) Complexity, multiplicity and intensity of symptoms (0 subthemes);
(2) Life experience and adversity converging at midlife (three subthemes);
(3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes).
Limitations include a potential sample bias towards difficult experiences of menopause.
The majority of our sample had a late diagnosis or discovery of autism, and their experiences might not generalize to wider autistic populations.
This research may help autistic people prepare for menopause and recognize symptoms earlier. Hearing about the experiences of others may let autistic people who struggle with menopause know they are not alone.
Previous studies report that menopause can be a very difficult transition for some autistic people.
This study focuses on how autistic people experience menopause and what support and information might help them. Autistic Community Research Associates played an important role in the research and co-authored this article.
We held four focus groups and eight interviews online with 24 autistic participants who lived in either Canada (n = 13) or the United Kingdom (n = 11).
We analysed participant conversations using a method called reflexive thematic analysis.
Participants described many intense challenges during menopause.
Four themes and eight subthemes were identified across participant groups:
(1) Complexity, multiplicity and intensity of symptoms (0 subthemes);
(2) Life experience and adversity converging at midlife (three subthemes);
(3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes).
The experiences of our participants may not be the same as other autistic people, and the study could have been more inclusive of diverse autistic groups.
However, hearing about the experiences of others may provide reassurance to autistic people who struggle with menopause and let them know they are not alone.
Exploring the links between sensory sensitivity, autistic traits and autism-related eating behaviours in a sample of adult women with eating disorders
Gianmarco Ingrosso, Veronica Nisticò, Francesco Lombardi, Benedetta Morlacchi, Anna Chiara Cigognini, Margherita Oresti, Raffaella Faggioli, Anna Mottaran, Carolina Alberta Redaelli, Martina Tramontano, Laura Ranzini, Simona Anselmetti, Sara Bertelli, Orsola Gambini & Benedetta Demartini
Abstract
This study examined the presence of autistic traits in a sample of adult women diagnosed with different Eating Disorders (ED), and explored the concurrent role of autistic traits and sensory sensitivity in influencing both their eating disorder symptomatology and their autism-related eating behaviours. Seventy-five women with different ED (Anorexia Nervosa, Bulimia Nervosa, Binge-Eating Disorder, Other Specified Feeding or Eating Disorder) completed the Eating Attitude Test (EAT-26), the Autism Quotient (AQ), the Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R), the Sensory Perception Quotient - Short Form 35 item (SPQ-SF35) and the Swedish Eating Assessment for Autism Spectrum Disorders (SWEAA). Twelve percent of participants scored above the cut-off on both the AQ and the RAADS-R, while 68% scored above the cut-off on the RAADS-R only. A mediation analysis revealed that the association between sensory sensitivity (SPQ-SFR35) and scores on both the EAT-26 and the SWEAA was significantly mediated by the presence of autistic traits (RAADS-R). These findings, first, confirm the presence of autistic traits in individuals with ED; second, they show that a lower sensory threshold (i.e., a higher sensory sensitivity) is associated with a higher presence of autistic traits which were, in turn, positively associated with dysfunctional eating behaviours typical of ED and ASD. This study ultimately highlights the importance of further research on autistic traits across all diagnostic categories of ED.
The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype
Sarah Bargiela, Robyn Steward, William Mandy
Abstract
We used Framework Analysis to investigate the female autism phenotype and its impact upon the under-recognition of autism spectrum conditions (ASC) in girls and women. Fourteen women with ASC (aged 22–30 years) diagnosed in late adolescence or adulthood gave in-depth accounts of: ‘pretending to be normal’; of how their gender led various professionals to miss their ASC; and of conflicts between ASC and a traditional feminine identity. Experiences of sexual abuse were widespread in this sample, partially reflecting specific vulnerabilities from being a female with undiagnosed ASC. Training would improve teachers’ and clinicians’ recognition of ASC in females, so that timely identification can mitigate risks and promote wellbeing of girls and women on the autism spectrum.
Genetic correlates of phenotypic heterogeneity in autism
Varun Warrier, Xinhe Zhang, Patrick Reed, Alexandra Havdahl, Tyler M. Moore, Freddy Cliquet, Claire S. Leblond, Thomas Rolland, Anders Rosengren, EU-AIMS LEAP, iPSYCH-Autism Working Group, Spectrum 10K and APEX Consortia, David H. Rowitch, Matthew E. Hurles, Daniel H. Geschwind, Anders D. Børglum, Elise B. Robinson, Jakob Grove, Hilary C. Martin, Thomas Bourgeron & Simon Baron-Cohen
Abstract
The substantial phenotypic heterogeneity in autism limits our understanding of its genetic etiology. To address this gap, here we investigated genetic differences between autistic individuals (nmax = 12,893) based on core and associated features of autism, co-occurring developmental disabilities and sex. We conducted a comprehensive factor analysis of core autism features in autistic individuals and identified six factors. Common genetic variants were associated with the core factors, but de novo variants were not. We found that higher autism polygenic scores (PGS) were associated with lower likelihood of co-occurring developmental disabilities in autistic individuals. Furthermore, in autistic individuals without co-occurring intellectual disability (ID), autism PGS are overinherited by autistic females compared to males. Finally, we observed higher SNP heritability for autistic males and for autistic individuals without ID. Deeper phenotypic characterization will be critical in determining how the complex underlying genetics shape cognition, behavior and co-occurring conditions in autism.
bottom of page
