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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.
Celebrating Neurodivergence amid Social Injustice
Meaghan Krazinski
Abstract
Burgeoning narratives of neurodivergence increase representation in media, producing an unprecedented visibility and awareness of what it means to be neurodivergent in a neurotypical world.
In this article I examine the ways in which a neurodivergent subject position can provide liberatory insights into oppressive patriarchal gender structures, while exploring productive tensions of the histories and lineages of neurodivergence marked by inequities, erasure, and epistemic injustice (Catala et al. 2021).
Although self-diagnosis is often accepted among communities, individuals without diagnosis face delegitimization in navigating institutions, accentuating race, class, and gender disparities. How do we honor a lineage of stories of neurodivergent individuals who could not claim this identity, and what does it mean to celebrate neurodiversity and simultaneously hold space and honor the absences marked by intersecting oppressions? Using Maria Lugones's world-traveling as a method, I reflect on these tensions via narratives of my own discovery of neurodivergence and diagnosis, contextualizing it within a larger lineage of neurodivergent family who do not identify as such, as well as my encounters with varying levels of access, privilege, and understanding.
I position my autoethnographic analysis against anecdotes and discursive media of the neurodiversity movement, finding that an autistic subject position complicates both femininity and gender.
Age of Diagnosis for Co-occurring Autism and Attention Deficit Hyperactivity Disorder During Childhood and Adolescence: a Systematic Review
Willow J. Sainsbury, Kelly Carrasco, Andrew J. O. Whitehouse,Lauren McNeil, Hannah Waddington
Abstract
Early identification and intervention are recognised as important elements of the clinical pathway for autism spectrum disorder (ASD).
Children with ASD and attention deficit hyperactivity disorder (ADHD) may be diagnosed at a different age than children who only have one of these diagnoses.
This systematic review aimed to identify the age at which children were diagnosed with both ASD and ADHD. Of the 9552 articles screened, 12 were included in the review.
The findings suggest that ASD is typically diagnosed later when ADHD is present, and ADHD is typically diagnosed earlier when ASD is present.
Further research is needed to understand the factors impacting a delayed ASD diagnosis and an earlier ADHD diagnosis when the two conditions co-occur.
Autistic Traits and Somatic Symptom Disorders: What Is the Link?
Barbara Carpita, Benedetta Nardi, Valeria Tognini, Francesca Poli, Giulia Amatori, Ivan Mirko Cremone, Stefano Pini, Liliana Dell’Osso
Abstract
Alterations in sensory processing, a key component of autism spectrum disorder (ASD), have recently attracted increasing attention as they result in peculiar responses to sensory stimuli, possibly representing a risk factor for the development of somatic symptom disorder (SSD).
Contextually, other features also associated with ASD, such as alexithymia, camouflaging and altered verbal, and non-verbal communication, have been suggested to represent risk factors for the occurrence and worsening of somatic symptomatology.
The aim of this work was to review the available literature about the association between SSD and the autism spectrum.
The results highlighted not only a higher prevalence of autistic features in patients suffering from SSD and a higher prevalence of reported somatic symptomatology in subjects with ASD but also how ASD subjects with co-occurrent somatic symptoms exhibit more severe autism-linked symptomatology.
From the paper reviewed also emerged many shared features between the two conditions, such as alexithymia, altered sensitivity to sensory stimuli, cognitive inflexibility, intolerance of uncertainty, and an increased risk of experiencing stressful life events, which may provide an explanation for the correlation reported.
Even though studies on the topic are still scant, the evidence reported suggests the importance of further assessing the correlation between the two disorders.
Emotional decision-making in autism spectrum disorder: the roles of interoception and alexithymia
Punit Shah, Caroline Catmur, Geoffrey Bird
Abstract
People with autism spectrum disorder (ASD) frequently show impaired sensory processing in different senses, including the interoceptive system.
Recent findings suggest that interoception is a fundamental component of emotional experience and that impaired interoception is associated with alexithymia.
This study aims to explore the association and interrelation between interoceptive confusion, alexithymia, and the capacity for emotional regulation among a sample of 33 adults with ASD compared to a control group of 35 adults with neurotypical development and its mutual impact.
The participants answered a series of questionnaires addressing these three variables.
The results showed :
(1) significant differences between the groups in all dimensions, with dysfunctional emotional regulation, impaired interoception, and alexithymia in the ASD group,
(2) significant correlations between interoceptive confusion, emotional clarity, and alexithymia in the ASD group but only positive correlations between interoceptive confusion and alexithymia in the CG, and
(3) that emotional clarity, alexithymia, and autism explain 61% of the variance in interoceptive confusion.
These results are in line with previous studies and suggest that training interoceptive ability may enhance emotional clarity and reduce alexithymia among those diagnosed with ASD, with significant implications in the planning of treatment.
Why the Diagnosis of Attention Deficit Hyperactivity Disorder Matters
Alaa M. Hamed, Aaron J. Kauer, Hanna E. Stevens
Abstract
Attention Deficit Hyperactivity disorder (ADHD) is one of the most common and challenging childhood neurobehavioral disorders. ADHD is known to negatively impact children, their families, and their community. About one-third to one-half of patients with ADHD will have persistent symptoms into adulthood. The prevalence in the United States is estimated at 5–11%, representing 6.4 million children nationwide. The variability in the prevalence of ADHD worldwide and within the US may be due to the wide range of factors that affect accurate assessment of children and youth. Because of these obstacles to assessment, ADHD is under-diagnosed, misdiagnosed, and undertreated. We examined factors associated with making and receiving the diagnosis of ADHD. We sought to review the consequences of a lack of diagnosis and treatment for ADHD on children’s and adolescent’s lives and how their families and the community may be involved in these consequences. We reviewed scientific articles looking for factors that impact the identification and diagnosis of ADHD and articles that demonstrate naturalistic outcomes of diagnosis and treatment. The data bases PubMed and Google scholar were searched from the year 1995 to 2015 using the search terms “ADHD, diagnosis, outcomes.” We then reviewed abstracts and reference lists within those articles to rule out or rule in these or other articles. Multiple factors have significant impact in the identification and diagnosis of ADHD including parents, healthcare providers, teachers, and aspects of the environment. Only a few studies detailed the impact of not diagnosing ADHD, with unclear consequences independent of treatment. A more significant number of studies have examined the impact of untreated ADHD. The experience around receiving a diagnosis described by individuals with ADHD provides some additional insights. ADHD diagnosis is influenced by perceptions of many different members of a child’s community. A lack of clear understanding of ADHD and the importance of its diagnosis and treatment still exists among many members of the community including parents, teachers, and healthcare providers. More basic and clinical research will improve methods of diagnosis and information dissemination. Even before further advancements in science, strong partnerships between clinicians and patients with ADHD may be the best way to reduce the negative impacts of this disorder.
Camouflaging in autism spectrum disorder: Examining the roles of sex, gender identity and diagnostic timing
Goldie McQuaid, Nancy Raitano Lee, Gregory Wallace
Abstract
Camouflaging in autism spectrum disorder (ASD) could be a factor in later diagnosis of individuals without co-occurring intellectual disability, particularly among those assigned female sex at birth.
Little research to date has examined how gender identity impacts camouflaging, however.
Further, no study has compared groups that differ in diagnostic-timing to directly investigate if later-diagnosed individuals demonstrate elevated camouflaging relative to those receiving an earlier diagnosis.
Using the Camouflaging Autistic Traits Questionnaire (CAT-Q) subscales (Assimilation, Compensation, and Masking), we investigated the roles of sex, gender identity (gender diverse vs. cisgender), and diagnostic timing (childhood/adolescent-diagnosed vs. adult-diagnosed), and the interactions of these factors, in ASD adults (N=502; ages 18-49 years).
Main effects of sex, gender identity, and diagnostic-timing were revealed.
ASD females reported more camouflaging across CAT-Q subscales compared to males.
Gender diverse adults reported elevated camouflaging on the Compensation subscale compared to cisgender adults.
Adulthood-diagnosed individuals reported elevated Assimilation and Compensation compared to childhood/adolescence-diagnosed individuals.
We discuss how the ‘performative’ aspects of camouflaging probed in the Assimilation and Compensation subscales may have particular implications for the intersection of neurodiversity and gender diversity, and for later diagnostic timing.
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