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Menstruation and menopause in autistic adults: Periods of importance?
Groenman, A.P., Carolien Torenvliet, Radhoe, T.A., Rentergem, van and Geurts, H.M.
Abstract
Autism spectrum conditions were once seen as a predominantly male condition. This has caused a paucity of information on common events in the lives of women, such as menstruation and menopause. Some smaller studies indicate that autistic women might suffer from increased difficulties surrounding these events. This study aims to investigate whether autistic women experience more frequent premenstrual dysphoric disorder, and increased complaints surrounding menopause. In partly overlapping samples (premenstrual dysphoric disorder, n = 70, nASC = 28, ncomparisons = 42; menopause, n = 65, nASC = 30, ncomparisons = 35), we investigated premenstrual dysphoric disorder prevalence and menopausal complaints. In 70 individuals, we did not find an increased prevalence of premenstrual dysphoric disorder in autistic women (14.3%) compared with non-autistic women (9.5%). In 65 women aged 40 years and above, we found that autistic women did experience higher levels of menopausal complaints. In autistic women, higher menopausal complaints were associated with higher levels of depression and autistic traits. In non-autistic women, menopausal complaints were associated with increased inattention, hyperactivity/impulsivity (i.e. attention deficit hyperactivity disorder traits), and depression. With this work, we show the important role that major reproductive milestones can have in an autistic woman’s life.
Interoception and emotion
Hugo D Critchley, Sarah N Garfinkel
Abstract
Influential theories suggest emotional feeling states arise from physiological changes from within the body. Interoception describes the afferent signalling, central processing, and neural and mental representation of internal bodily signals. Recent progress is made in conceptualizing interoception and its neural underpinnings. These developments are supported by empirical data concerning interoceptive mechanisms and their contribution to emotion. Fresh insights include description of short-term interoceptive effects on neural and mental processes (including fear-specific cardiac effects), the recognition of dissociable psychological dimensions of interoception, and models of interoceptive predictive coding that explain emotions and selfhood (reinforced by structural anatomical models and brain and experimental findings). This growing grasp of interoception is enriching our understanding of emotion and its disorders.
Camouflaging, not sensory processing or autistic identity, predicts eating disorder symptoms in autistic adults
Siofra Bradley, Fhionna Moore, Fiona Duffy, Lili Clark,T asha Suratwala, Pooky Knightsmith, Karri Gillespie-Smith
Abstract
The objective of this study was to explore the role that Autistic identity, sensory processing and camouflaging behaviours have on eating disorder symptomology in Autistic adults.
Previous research has focused on cognitive and sensory factors to explain the association between autism and eating disorders, but the roles of social identity and camouflaging are yet to be explored.
Autistic participants ( N = 180) were recruited from NHS settings and community groups.
The participants completed online questionnaires measuring autistic identity, camouflaging behaviours, sensory processing, autistic traits and eating disorder symptoms.
Multiple regression revealed that camouflaging significantly predicted eating disorder symptoms.
Although sensory processing was related, it did not significantly predict eating disorder symptom severity.
In addition, there was no significant relationship between autistic identity and eating disorder symptom severity.
This study highlights the impact that camouflaging behaviours and sensory processing can have on eating disorder symptomatology in autism and may indicate important considerations for the treatment of eating disorders in Autistic people.
Lay Abstract This study aimed to explore the impact of Autistic identity (i.e. feeling like you belong to the Autistic community), sensory profiles (e.g. being over or under responsive to sensations) and camouflaging behaviours (i.e. masking) on eating disorder symptoms in Autistic adults.
180 Autistic people were recruited from the community and NHS.
The Autistic people completed online questionnaires measuring Autistic identity, sensory profiles, camouflaging behaviours, autistic traits and eating disorder symptoms.
The analysis showed that higher levels of camouflaging behaviour predicted higher levels of eating disorder symptoms.
Sensory profiles were related to but did not predict eating disorder symptoms and there was no relationship between level of Autistic identity and eating disorder symptoms.
This shows that camouflaging is the most important predictor of eating disorder symptoms in Autistic people, and warrants further exploration.
Association between cumulative psychosocial adversity in the family and ADHD and autism: a family-based cohort study
Aleksandra Kanina, Henrik Larsson, Arvid Sjölander, Agnieszka Butwicka, Mark J. Taylor, Miriam I. Martini, Paul Lichtenstein, Frida E. Lundberg, Brian M. D’ Onofrio & Mina A. Rosenqvist
Abstract
Cumulative exposure to psychosocial adversity at an early age has been shown to be a risk factor for attention-deficit hyperactivity disorder (ADHD) and autism that often co-occur. However, it is not clear if this association reflects a causal effect or familial confounding. We aimed to assess whether cumulative psychosocial adversity in the family increases the risk for ADHD and autism in offspring while accounting for unmeasured familial confounding. We used a population-based cohort of 1,877,901 individuals born in Sweden between 1990 and 2009. Participants were followed from the age of 3 until 2013, with a median follow up time of 13.8 years. We created a cumulative index based on 7 psychosocial adversity factors. We used Cox regression to estimate the hazard ratios (HRs) relating neurodevelopmental conditions to cumulative psychosocial adversity. To address familial confounding, the analyses were repeated in groups of relatives of different kinship: siblings and half-siblings and cousins. A dose-response relationship was observed between cumulative exposure to psychosocial adversity and ADHD at a general population level (covariate adjusted HRs (aHRs) with 95% confidence intervals ranged from 1.55 [one adversity; 1.53–1.58] to 2.65 [ ≥ 4 adversities; 1.98–3.54]). No clear dose-response relation was seen for autism (aHRs ranged from 1.04 [.59–1.84] to 1.37 [1.30–1.45]). HRs of ADHD and autism decreased with increasing level of kinship in the analysis of relatives. Cumulative exposure to psychosocial adversity was associated with both ADHD and autism in the general population, these associations were partly explained by unmeasured familial confounding between relatives. This highlights the need for using family-based designs in studies of psychosocial adversity and ADHD and autism.
The Prevalence of Attention Deficit/Hyperactivity Disorder Symptoms in Children and Adolescents With Autism Spectrum Disorder Without Intellectual Disability: A Systematic Review
Eaton, C., Roarty, K., Doval, N., Shetty, S., Goodall, K. and Rhodes, S.M.
Abstract
Objective:
ADHD commonly co-occurs with ASD without ID in young people. It has been difficult to obtain accurate prevalence estimates of ADHD in this population, as a dual-diagnosis was not permitted until DSM-V. We systematically reviewed the literature on the prevalence of ADHD symptoms in young people with ASD without ID.
Method:
9,050 articles were identified through six databases. Articles were reviewed against inclusion and exclusion criteria and 23 studies were included.
Results:
ADHD symptom prevalence varied from 2.6% to 95.5%. We discuss these findings according to the ADHD assessment measure, informant, diagnostic criteria, risk of bias rating and recruitment pool.
Conclusion:
ADHD symptoms are common in young people with ASD without ID, but there is substantial variance in study reporting. Future studies should recruit participants from community sources, provide information on key sociodemographic sample characteristics and assess ADHD with standardized diagnostic criteria, using both parent/carer and teacher report.
Raising the voices of AuDHD women and girls: exploring the co-occurring conditions of autism and ADHD
Emma Craddock
Abstract
This is a Current Issue because neurodivergent women and girls have been left behind, missed by the medical profession for decades.
ADHD and autism have historically been considered to be male conditions, with diagnosis being 4 times more likely for males than females. The tides are changing with more women becoming aware of, diagnosed with, and seeking a diagnosis of con- ditions such as ADHD and autism.
The media response to this surge in diag- noses has often been disparaging, although attempts to widen awareness exist (including recent BBC documentary Unmasking My Autism).
However, women face long waiting lists, a lack of pre- and post-diagnosis support, sex biases in diagnostic criteria, and are left to deal with the trauma of a lifetime of misdiagnoses, poor mental health, and internalisation of negative mes- sages about their character, alone.
This piece explores two issues; the gen- dered omission of women and girls from autism and ADHD diagnoses and the theoretical and practical implications of the co-occurring conditions.
When I refer to gender, I am referring to the social structure of gender which produces shared meanings about gendered behaviours, norms, roles, rela- tions and institutions.
Being a Woman Is 100% Significant to My Experiences of Attention Deficit Hyperactivity Disorder and Autism: Exploring the Gendered Implications of an Adulthood Combined Autism and Attention Deficit Hyperactivity Disorder Diagnosis
Emma Craddock
Abstract
This article provides original insight into women’s experiences of adulthood diagnoses of attention deficit hyperactivity disorder (ADHD) and autism.
Research exploring experiences of adulthood diagnoses of these conditions is emerging. Yet, there is no research about the gendered experiences of an adulthood combined ADHD and autism (AuDHD) diagnosis.
This article addresses this gap through interpretative phenomenological analysis of email interviews with six late-diagnosed AuDHD women revealing the complex interplay between late diagnosis, being a woman, and combined diagnoses of ADHD and autism.
It underscores how gender norms and stereotypes contribute to the oversight and dismissal of women’s neurodivergence.
Interpretative phenomenological analysis reveals the inextricability of femininity and neurotypicality, the gendered burden, discomfort, and adverse consequences of masking, along with the adverse outcomes of insufficient masking.
Being an undiagnosed AuDHD woman is a confusing and traumatising experience with profound and enduring repercussions.
The impact of female hormones exacerbated participants’ struggles with (peri)menopause often being a catalyst for seeking diagnosis after decades of trauma.
The epistemic injustice of not knowing they were neurodivergent compounded this trauma.
Diagnosis enabled participants to overcome epistemic injustice and moved them into a feminist standpoint from which they challenge gendered inequalities relating to neurodiversity.
This article aims to increase understanding and representation of late-diagnosed AuDHD women’s lived experiences.
The findings advocate for trauma-informed pre- and post-diagnosis support which addresses the gendered dimension of women’s experiences of being missed and dismissed as neurodivergent.
There needs to be better clinical and public understanding of how AuDHD presents in women to prevent epistemic injustice.
The overlap of disordered eating, autism and ADHD: future research priorities as identified by adults with lived experience
Johanna Keller, Moritz Herle, William Mandy, Virginia Carter Leno
Abstract
The focus of mental health research in emerging fields should be driven by the priorities of people with relevant lived experience. Autism and ADHD are childhood-onset neurodevelopmental conditions that are associated with a range of health inequalities, including increased risk for eating disorders. The evidence base for how best to support neurodivergent individuals who experience disordered eating is still in its infancy, but research suggests that existing clinical approaches are not currently fit for purpose. In this Personal View, through community consultation with autistic people and people with ADHD who have experienced disordered eating, we present a comprehensive ranked list of research topics that people with lived experience prioritise. These priorities could be clustered into two areas: improving outcomes and identifying causal mechanisms. Within the theme of improving disordered eating outcomes, priorities are the improvement of treatment, the need for neurodiversity training in clinical services, and the identification and minimisation of unintended adverse effects of psychological intervention. Within the theme of identifying causal mechanisms, priorities are the identification of risk factors and a better understanding of the effect of autistic or ADHD neurocognitive profiles as potential contributors to eating disorder vulnerability. The final top ten research priorities are contextualised in terms of how they compare to the existing literature on the overlap between autism or ADHD and eating disorders, and concrete suggestions are made for how to implement these research priorities as testable hypotheses. Research informed by these priorities will build necessary understanding of the reasons behind the increased risk for eating disorders in neurodivergent people, and how to best support people who are affected by disordered eating to live positive and fulfilling lives
Naming ourselves, becoming neurodivergent scholars
Hanna Bertilsdotter Rosqvist,Lill Hultman,Sofia Österborg Wiklund,Anna Nygren,Palle Storm,Greta Sandberg
Abstract
In this paper we seek to restory what has been storied as “the problem of ADHD”.
Informed by calls for a critical ADHD studies, we explore the possibilities of ADHD collective autoethnographic storytelling.
Together we (en)counter narratives of ADHD. Within our collective writing space, from our ADHD/AuDHD bodyminds, we seek to re-story our ADHD/AuDHD.
We map a field of critical ADHD research within social sciences and point out problems of outsider perspectives, stressing a need for insider perspectives.
Our data consist of collective authoethnographic writings about ADHD.
From the data we have explored our experiences of (En)Countering ADHD narratives, and a transition process which we refer to as from ”broken NT-scholars” to neurodivergent scholars, stressing the importance of ADHD:ers as independent as well as collective agents, and ADHD as epistemological standpoint within research.
Suicidality in women with Premenstrual Dysphoric Disorder: a systematic literature review
E. Osborn, J. Brooks, P. M. S. O’Brien & A. Wittkowski
Abstract
Previous research has identified how menstruation is an important factor in both attempted and completed suicides for women. The purpose of this review was to outline (a) the risk profile for suicidality in women who were identified to experience Premenstrual Dysphoric Disorder (PMDD), a condition characterized by severe physical and psychological changes that occur during the luteal menstrual phase, and (b) the implications of these findings for clinical practice. A systematic literature review was conducted using five databases to identify any peer-reviewed articles published between 1989 and 2019. Ten papers eligible for inclusion were identified: three pertaining to suicide cognitions, five to suicide attempts and two to both cognitions and attempts. Findings showed that suicidal thoughts, ideation, plans and attempts were strongly associated with experiences of PMDD and that these findings were independent of psychiatric co-morbidities. However, women with PMDD did not present with more severe risk profiles for suicide attempts (in terms of frequency, impulsivity and lethality) or make more frequent attempts during the luteal menstrual phase compared with suicide attempters without PMDD. Women with PMDD should be considered a high risk group for suicidality; thus, identifying and treating symptoms are vital in reducing suicide attempts. Implications for clinical practice are outlined in the discussion.
The Experiences of Autistic Adults Who Were Previously Identified as Having BPD/EUPD: A Phenomenological Study
Bruce Tamilson, Sebastian Shaw, Jessica Eccles
Abstract
An increasing number of studies are investigating the links between autism and borderline personality disorder.
Studies report overlapping differences and the challenges in differentiating between these two diagnostic labels. In practice, there are many people, especially autistic women, who feel that they were misdiagnosed with borderline personality disorder.
This study aimed to explore the experiences of autistic adults who were previously diagnosed with borderline personality disorder.
This is an interpretive phenomenological study. Data were collected using one-to-one, semi-structured interviews.
Interview audio-recordings were transcribed and analysed using an interpretive phenomenological analysis.
Ten people participated.
All recalled autistic differences since childhood that went unnoticed. In most cases, borderline personality disorder was felt to have been a misdiagnosis.
This misdiagnosis carried stigma, introduced diagnostic overshadowing and led to harmful experiences for our participants.
While they did not identify with the diagnosis, they felt powerless to challenge it. In contrast, receiving an autism diagnosis was ‘life changing’.
While this did not solve everything for them, it was deeply validating. It also allowed them to be their true authentic selves, shifting the focus away from ‘treatment’ and changing who they are to suit others, towards acceptance of their differences and neurotype.
This significantly improved their mental health. Lay Abstract Autistic people face many barriers to receiving an autism diagnosis.
Often, they may be misdiagnosed with borderline personality disorder instead.
For our study, we interviewed 10 autistic adults who had previously been diagnosed with borderline personality disorder.
This helped us to better understand their experiences. They explained how borderline personality disorder is quite stigmatised and may suggest that people are to blame for their differences in behaviour.
They found the treatments they had to try for borderline personality disorder to be harmful. For example, these treatments promoted ‘masking’.
Previous research showed that masking can be harmful for autistic people, linking it to risk of suicide.
This diagnosis also led to healthcare professionals neglecting them and discounting their beliefs.
Once they were diagnosed with borderline personality disorder, it was hard to access an autism assessment.
When they did receive their autism diagnoses, this was much more positive.
This diagnosis was validating. It also improved their mental health, as they were no longer expected to mask – their differences were now accepted.
They still felt that autism was stigmatised in society.
However, this was very different to the stigma around borderline personality disorder.
They felt autism stigma was more about their competence as people, whereas borderline personality disorder stigma was about how they were broken and might be harmful to others.
This study is important because it allows their stories to be heard by researchers and healthcare professionals alike.
Adding their voices helps to humanise them, promoting positive change in mental health services. More research is now needed.
Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production
Monique Botha
Abstract
There has been a focus on autistic-led and participatory research in autism research, but minimal discussion about whether the field is hospitable to autistic involvement.
While the focus on participatory and/or autistic-led research is abundantly welcome, a wider conversation should also happen about how autistic people are treated in the process of knowledge creation.
As such, I present a critical reflection on my experiences of academia as an autistic autism researcher.
I open by questioning whether I am an academic, an activist, or an advocate before discussing my journey through academia, and my exposure to dehumanizing, objectifying, and violent accounts of autism.
I highlight how the construction of objectivity has resulted in a failure to question the validity of these dehumanizing accounts of autism, which are regarded as “scientifically-sound” by virtue of their perceived “objectivity.”
Furthermore, I discuss how the idea of objectivity is used to side-line autistic expertise in disingenuous ways, especially when this knowledge challenges the status-quo.
Despite claiming to be value-free, these dehumanizing accounts of autism embody social and cultural values, with a complete lack of transparency or acknowledgment.
I then discuss how these dehumanizing accounts and theories—entangled in values—reverberate into autistic people's lives and come to be ways of constituting us.
Following this, I discuss the rationality of the anger autistic people feel when encountering these accounts, and instead of urging people to distance themselves from these emotions, I discuss the value of “leaning-in” as a radical act of dissent in the face of research-based violence.
I then make a call to action urging all those who write or speak about autism to engage reflexively with how their values shape their understanding and construction of autistic people.
Lastly, I conclude by answering my opening question: I have emerged as an advocate, activist, and academic.
For me, belonging to the autistic community, acknowledging our marginalization, and recognizing our suffering within society means that hope for a better and just future has always, and will always underpin my work.
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