"Maybe No One Knows We Need Help": Understanding the Experiences of Autistic Working Mothers in Australia.

Background: Although there are no known studies investigating autistic working mothers, research has demonstrated that managing employment and motherhood in non-autistic populations has specific challenges, as does employment in autistic populations. This autistic-led study aimed at investigating the experience of autistic working mothers to identify benefits, challenges, and support needs. Methods: We utilized a subjectivist epistemological perspective to learn about the experiences of autistic working mothers. We recruited 10 autistic working mothers (aged 34-50 years) via social media advertisements, who participated in a 45- to 60-minute semi-structured interview where we asked questions developed in consultation with a community reference group. We transcribed interviews and then analyzed them using inductive reflexive thematic analysis. Results: We identified three key themes. The first theme, "Wellbeing: Work gives me purpose," discusses how employment supports mental well-being. The second theme, "Challenges: It's hard being an autistic working mother," includes the challenges of balancing work and caregiving, guilt related to being a working mother, and issues with part-time work. The third theme, "The invisible disability: Everyone thinks I look okay," discusses the lack of understanding of participants' challenges, with assumptions they are coping, and the lack of supports that led to some participants no longer seeking assistance. Conclusions: The responses of the autistic women who took part support a view that autistic working mothers may experience some similar challenges to non-autistic working mothers, including stress in juggling caring and work roles. They identified additional challenges related to their gender and their autistic identity, including a lack of understanding of the female (or "internalized") presentation of autism. These findings will help autistic working mothers by promoting a better understanding of their experiences and challenges when they speak with health professionals, government, and employers seeking support and accommodations.

Why is this an important issue?: We did not find any existing research about the experiences of autistic women who are working mothers. However, we felt this was an important topic to investigate because previous research involving women who are not autistic has reported that being a working mother can be challenging. In addition, previous autism research has found that autistic people can find aspects of work difficult. What was the purpose of this study?: We wanted to find out about the experiences of autistic working mothers and their support needs. What did the researchers do?: We recruited 10 autistic working mothers (aged 34­50 years), through social media advertisements. We interviewed each participant separately and the interviews took between 45 and 60 minutes. We asked each participant the same set of questions to understand their perspectives on the benefits and challenges of being a mother, an employee, and a working mother, and to find out where they needed support. We then analyzed the interview transcripts to find common themes. What were the results of the study?: We identified three key themes about the experience of autistic working mothers. The first theme called "Wellbeing: Work gives me purpose" discusses how employment supports mental well-being and financial independence. The second theme, "Challenges: It's hard being an autistic working mother," includes the challenges in balancing work and caregiving, guilt related to being a working mother, and issues with part-time work. The third theme called "The invisible disability: Everyone thinks I look okay" discusses a lack of understanding of participants' challenges, with assumptions they are coping, and the lack of supports for autistic working mothers that led to some participants no longer seeking assistance. What do these findings add to what was already known?: We found that autistic working mothers may experience some challenges, which are similar to those identified in previous studies involving working mothers who are not autistic such as stress related to juggling being a mother and an employee. In addition to this, they may experience other challenges related to their gender and their autism, such as a lack of understanding of how autistic women mask and camouflage and assumptions by professionals that autistic working mothers are coping because they previously managed employment and parenting without any support. What are the potential weaknesses in the study?: One limitation of our study is that the participant group lacks diversity. For example, it does not include autistic people from a range of cultural backgrounds such as First Nations Australians, or from a range of educational and socio-economic backgrounds. Although the study was open to participants who identify their gender as non-binary, no non-binary autistic people registered for the study. This meant our results only included the views of autistic working mothers who identify as women and have completed further education after high school. In addition, 90% of participants were diagnosed with autism as adults. Although late diagnosis is common, especially in women, it may also mean that some of the results were specific to this group. Future research could address these issues by having a larger participant group, which specifically includes those from diverse cultural, educational, and socioeconomic backgrounds, gender diverse participants, and both early- and late-diagnosed autistic women and non-binary people. How will these findings help autistic adults now or in the future?: These findings will help autistic working mothers by promoting a better understanding of their experiences and challenges when they speak with health professionals, government, and employers seeking support and accommodations.

The impact of sleep quality, fatigue and social well-being on depressive symptomatology in autistic older adolescents and young adults.

Depression and poor sleep quality commonly co-occur with autism, and depression has been associated with loneliness and reduced social support. In non-autistic samples, poor sleep quality and daytime fatigue also contribute to depression. However, the contribution of sleep quality and fatigue to depressive symptoms, and how they interact with social factors to influence depression in autism remain unexplored. Our aim was to examine these relationships in 114 young autistic adults aged 15-25 years (57% male) from the SASLA online, longitudinal study (baseline and 2-year follow-up). Hierarchical multiple regression models examined the association between social well-being (social integration and social contribution; T1), sleep quality (T1, T2), and fatigue (T1, T2) on depression (T1, T2). Two mediation models were conducted on T1 data predicting depression from sleep quality though fatigue and sleep quality through social well-being. Depression and fatigue scores did not change over 2 years, but sleep quality worsened. The T1 regression model was significant (R2 = 36%) with fatigue and social contribution individually predicting depression symptomatology. The longitudinal regression model was also significant (adjusted R2 = 57%) with social contribution (T1) as the only significant predictor of depression (T2). Fatigue trended towards mediating the sleep quality-depression relationship, while social well-being was a significant partial mediator of this relationship. Results highlight that sleep quality, fatigue, and social well-being contribute to depression among young autistic adults. Interestingly, fatigue and social well-being were independently associated with depression. Thus, addressing sleep quality and associated fatigue, and social well-being is important when treating depression in autistic individuals.

The Efficacy of Disability Employment Service (DES) Providers Working with Autistic Clients.

The efficacy of the Australian Disability Employment Services (DES) for autistic jobseekers has not been examined and is currently undergoing Government reform. To help inform the new DES strategy, we sought the views of: 24 autistic individuals; seven family members of autistic individuals, and; 46 DES employees. Data were collected using surveys and interviews. Data were analysed using Mann Whitney tests plus deductive thematic analysis based on Nicholas and colleagues' ecosystems model. Participants highlighted a need to adapt existing policies to enhance flexibility of the DES model. There was participant consensus that DES staff require specific education and training to meet the needs of autistic people. Suggestions to inform the new model of DES for autistic people are made.

The Suicidal Ideation Attributes Scale-Modified (SIDAS-M): Development and preliminary validation of a new scale for the measurement of suicidal ideation in autistic adults.

LAY ABSTRACT: Autistic people may be at higher risk of suicidal behavior than people in the general population. Suicidal behavior may include thinking about suicide or attempting to end one's own life by suicide. It is important to identify autistic people who may be thinking about suicide. People who are at risk of suicidal behavior can be identified by asking questions about whether they have been thinking about suicide. A specially designed questionnaire, or screening instrument, can help someone ask the best questions to find out if someone has been thinking about suicide. This information can help to identify supports to be put in place to prevent suicidal behavior, such as a suicide attempt. However, autistic people may interpret questions differently than non-autistic people. It is important to use screening tools that have been designed with, and for autistic people. In this study, we examined the Suicidal Ideation Attributes Scale (SIDAS). The SIDAS is an existing tool that was developed to screen for suicidal thinking in the general population. We modified SIDAS for use with autistic adults. We involved autistic people in the process of modifying SIDAS. We called the modified instrument the SIDAS-M. The results of our study showed SIDAS-M may be useful for screening for suicidal thinking in autistic adults who do not have an intellectual disability.

Short report: Gendered workplace social interaction processes in autism.

BACKGROUND: Navigating workplace social interactions can be stressful for autistic people and be experienced differently by gender. A better understanding of the autistic experience of these difficulties is needed to inform effective policy, practice, and individualized support. METHOD: Fifty-five autistic individuals (n women=32; n men=22) participated in either an online survey or focus group. Data were analyzed using inductive thematic analysis. RESULTS: The data suggests that the social and interaction expectations placed upon autistic individuals differ by gender and can contribute to occupational stress. CONCLUSIONS: The data provides a basis for further investigation considering Conservation of Resources Theory and its practical application to inform reasonable adjustments in the workplace for autistic people. WHAT THIS PAPER ADDS: The gendered workplace experiences of autistic people is an emerging area of research. However, how workplace social interactions are experienced by each gender remains under-researched. An understanding of this could help decrease occupational stress, inform reasonable adjustments, and increase labor market participation in this population. This paper adds to the existing literature in showing that workplace social interactions for autistic people are experienced differently by gender. As such, the implications in the experience of occupational stress may also differ. Therefore, the importance of having reasonable adjustments in the workplace that account for gender is highlighted.

The association between COVID-19, personal wellbeing, depression, and suicide risk factors in Australian autistic adults.

The COVID-19 pandemic has had a significant impact on the mental health and wellbeing of the world's population, with particularly negative effects on vulnerable populations, including autistic people. Although some consensus regarding specific impact on aspects of wellbeing and mental health in autism is starting to emerge, it is unclear whether the pandemic has increased suicide risk. The goals of this study were to examine (a) potential associations between COVID-19 impact and depression, personal wellbeing, and suicide risk factors in Australian autistic adults and (b) age and gender effects. The COVID-19 Impact Scale (CIS), Personal Wellbeing Index, Patient Health Questionnaire, and the Suicide Behavior Questionnaire, Revised (SBQ-R), were administered to 111 autistic adults aged 20 to 71 years during the second wave of the COVID-19 pandemic in Australia. COVID-19 impact showed small associations with poorer personal wellbeing (r = -0.224, p = 0.023, [-0.409, -0.016]) and higher depressive symptoms (r = 0.268, p = 0.006, [0.056, 0.445]) and was not associated with the SBQ-R suicide risk score (r = 0.081, p = 0.418, [-0.118, 0.264). No significant effects were identified for age. Although model results were similar for women and men, the strength of the associations between personal wellbeing and depression (z = -2.16, p = 0.015), and depression and SBQ-R suicide risk (z = 1.961, p = 0.025), were stronger in women than in men. Qualitative analysis of an open response question from the CIS suggested that the pandemic had both positive and negative impacts on participants. The COVID-19 pandemic has had a large impact on the mental health and wellbeing of the world's population, particularly vulnerable populations such as autistic people. It is not known if these impacts on mental health and wellbeing have increased suicide risk. Our findings suggest that the impact of the COVID-19 pandemic may be associated with poorer wellbeing and higher depression, but is not associated with suicide risk. Overall, autistic people reported both positive and negative impacts of the pandemic on their lives.

Rethinking ME/CFS Diagnostic Reference Intervals via Machine Learning, and the Utility of Activin B for Defining Symptom Severity.

Biomarker discovery applied to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a disabling disease of inconclusive aetiology, has identified several cytokines to potentially fulfil a role as a quantitative blood/serum marker for laboratory diagnosis, with activin B a recent addition. We explored further the potential of serum activin B as a ME/CFS biomarker, alone and in combination with a range of routine test results obtained from pathology laboratories. Previous pilot study results showed that activin B was significantly elevated for the ME/CFS participants compared to healthy (control) participants. All the participants were recruited via CFS Discovery and assessed via the Canadian/International Consensus Criteria. A significant difference for serum activin B was also detected for ME/CFS and control cohorts recruited for this study, but median levels were significantly lower for the ME/CFS cohort. Random Forest (RF) modelling identified five routine pathology blood test markers that collectively predicted ME/CFS at ≥62% when compared via weighted standing time (WST) severity classes. A closer analysis revealed that the inclusion of activin B to the panel of pathology markers improved the prediction of mild to moderate ME/CFS cases. Applying correct WST class prediction from RFA modelling, new reference intervals were calculated for activin B and associated pathology markers, where 24-h urinary creatinine clearance, serum urea and serum activin B showed the best potential as diagnostic markers. While the serum activin B results remained statistically significant for the new participant cohorts, activin B was found to also have utility in enhancing the prediction of symptom severity, as represented by WST class.

"I Would Love to Just Be Myself": What Autistic Women Want at Work.

Background: Autistic individuals experience barriers obtaining and sustaining employment. In the general population, gender also impacts labor market experiences. Understanding the occupational aspirations and expectations of individuals disaggregated by autism diagnosis and gender may assist the development of tailored workplace policies and support strategies. Methods: We used inductive thematic analysis to understand the employment expectations of 89 participants (34 autistic women, 32 typically developing women, and 23 autistic men) who answered open-ended items in an online survey. Participants were ages 18 to 68 years. We identified themes and compared these by autism diagnosis and gender. Results: The first major theme emerging from the data was the desire for an opportunity to have a fulfilling career (i.e., fit), with associated minor themes of job-person and person-environment fit. With no associated minor themes, the second and third major themes were desire for stable employment and low hope for finding meaningful work. Differences were apparent by autism diagnosis and not gender. Conclusions: It is pertinent that autistic women have job-person and person-environment fit to thrive at work. Workplace policies and procedures influencing attitudinal, structural, and procedural change appear warranted to facilitate inclusion of autistic women in the labor market. Lay summary: Why was this study done?: Autistic people have a lot of difficulties gaining and maintaining suitable work. Yet, no one has asked autistic women what they hope their future in the workforce could look like. Asking this question can highlight problems and possible solutions to help autistic women gain and maintain meaningful employment.What was the purpose of this study?: To help understand the aspirations of autistic women regarding their employment.What did the researchers do?: We asked autistic and nonautistic women, as well as autistic men, in Australia to answer open-ended questions in an online survey about work. One question was "what do you hope for your future in the workforce?" We organized people's responses into categories, or themes, which described different aspects of participants' answers. We then compared written responses of the autistic and nonautistic women, as well as the answers of autistic women and men.What were the results of the study?: Participants' responses can be described with three major themes: (1) an opportunity to have a fulfilling career that matches interests and skills in a suitable environment; (2) wanting stable employment; and (3) having low hope for finding meaningful work. Finding a job that suits interests, skills, and work preferences within a supportive environment was mentioned as vital for sustained participation in the labor market by autistic women. Although these things were also mentioned by nonautistic women, they were much more important for autistic women. Furthermore, autistic women's and men's aspirations are similar, and of equal importance to each of them.What do these findings add to what was already known?: Much is already known about the experiences of autistic men in the workplace. This study addresses and builds on the little research about the occupational aspirations and expectations of autistic women. The results of this study suggest that autistic women want an opportunity to find meaningful and stable work where they "fit in" with the freedom to be themselves. Because some similarities were found between what autistic and nonautistic women (as well as autistic men) need in the workplace, if changes affecting businesses are made to help autistic women, more people would benefit.What are potential weaknesses in the study?: This research is limited by the way information was obtained from participants, and sample characteristics; for example, the autistic women were diagnosed with autism at a younger age than the autistic men. It is a small, qualitative study from a single open-ended survey item. Obtaining participants using social media may mean people in metropolitan areas more likely participated. Furthermore, the sample was from Australia only, looked at people who identified as women or men, and did not address racial or ethnic diversity.How will these findings help autistic adults now or in the future?: Understanding the aspirations of autistic women can suggest interventions that help them succeed in the workforce. The strong desire for job-person-environment fit by autistic women could, for example, suggest encouraging more flexible workplace practices supportive of career development. Or, it could suggest creating a free, or subsidized, support service to help autistic people of all ages find work that matches (or can be molded) to suit their skills, abilities, work preferences, and environmental (e.g., sensory) needs.

Challenges for females with high functioning autism in the workplace: a systematic review.

PURPOSE: Individuals with High Functioning Autism (HFA) experience high levels of underemployment and unemployment, resulting in negative economic, social, and health outcomes. Given what is known about labor market participation difficulties experienced by women generally, and the paucity of research concerning women with HFA, this systematic review synthesized what is known about the labor market experiences of women with HFA. METHOD: A systematic review of the literature concerning adult females with HFA in relation to the workplace yielded 1947 results; 11 met inclusion criteria being based on original data, but not necessarily focusing solely on women. RESULTS: The total number participants with HFA across all studies was 731 (M = 66.45, SD = 95.44, Mdn = 18.00) aged between 18 and 70 years (M = 34.38, SD = 7.71); females represented 38% (n = 279) of those sampled. The principal challenges reported for individuals with HFA at work were communication, social interaction, and stress, together with negative mental and physical health. CONCLUSION: These results should be interpreted with caution. Of the studies found, 73% were qualitative and based on small samples. Only one paper differentiated female data in analyses. These factors combined suggest large-scale mixed method research focused on females with HFA is required to gain an accurate insight into the challenges faced in the workplace, to in turn inform intervention and support. However, implications for rehabilitation based on what is known are discussed. Implication for Rehabilitation Unemployment and underemployment of persons with High Functioning Autism (HFA) poses social, health and economic issues for both individuals and the wider community. Those with HFA have the intellectual capacity to make a substantial contribution to the workplace. Based on what is known, some of the challenges for females with HFA might be similar to those experienced by men with HFA, however it is possible that there are gender-based differences (in both type and severity of challenges) that require attention.

Induction of experimental autoimmune orchitis in mice: responses to elevated circulating levels of the activin-binding protein, follistatin.

Experimental autoimmune orchitis (EAO) is a rodent model of chronic testicular inflammation that mimics the pathology observed in some types of human infertility. In a previous study, testicular expression of the inflammatory/immunoregulatory cytokine, activin A, was elevated in adult mice during the onset of EAO, indicating a potential role in the regulation of the disease. Consequently, we examined the development of EAO in mice with elevated levels of follistatin, an endogenous activin antagonist, as a potential therapeutic approach to testicular inflammation. Prior to EAO induction, mice received a single intramuscular injection of a non-replicative recombinant adeno-associated viral vector carrying a gene cassette of the circulating form of follistatin, FST315 (FST group). Serum follistatin levels were increased 5-fold in the FST group compared with the control empty vector (EV) group at 30 and 50 days of EAO, but intra-testicular levels of follistatin or activin A were not significantly altered. Induction of EAO was reduced, but not prevented, with mild-to-severe damage in 75% of the EV group and 40% of the FST group, at 50 days following immunisation with testicular homogenate. However, the EAO damage score (based on disruption of the blood-testis barrier, apoptosis, testicular damage and fibrosis) and extent of intratesticular inflammation (expression of inflammatory mediators) were directly proportional to the levels of activin A measured in the testis at 50 days. These data implicate activin A in the progression of EAO, thereby providing a potential therapeutic target; however, elevating circulating follistatin levels were not sufficient to prevent EAO development.

Activin B is a novel biomarker for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) diagnosis: a cross sectional study.

BACKGROUND: Investigations of activin family proteins as serum biomarkers for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). CFS/ME is a disease with complex, wide-ranging symptoms, featuring persistent fatigue of 6 months or longer, particularly post exertion. No definitive biomarkers are available. METHODS: A cross-sectional, observational study of CFS/ME patients fulfilling the 2003 Canadian Consensus Criteria, in parallel with healthy non-fatigued controls, was conducted. Comparisons with a previously defined activin reference population were also performed. For the total study cohort the age range was 18-65 years with a female: male participant ratio of greater than 3:1. All participants were assessed via a primary care community clinic. Blood samples were collected for pathology testing after physical examination and orthostatic intolerance assessment. Cytokines, activin A, activin B and follistatin were also measured in sera from these samples. All data were compared between the CFS/ME and control cohorts, with the activins and follistatin also compared with previously defined reference intervals. RESULTS: Serum activin B levels for CFS/ME participants were significantly elevated when compared to the study controls, as well as the established reference interval. Serum activin A and follistatin were within their normal ranges. All routine and special pathology markers were within the normal laboratory reference intervals for the total study cohort, with no significant differences detected between CFS/ME and control groups. Also, no significant differences were detected for IL-2, IL-4, IL-6, IL-10, IL-17A, TNF or IFN-gamma. CONCLUSION: Elevated activin B levels together with normal activin A levels identified patients with the diagnostic symptoms of CFS/ME, thus providing a novel serum based test. The activins have multiple physiological roles and capture the diverse array of symptoms experienced by CFS/ME patients.

Testicular activin and follistatin levels are elevated during the course of experimental autoimmune epididymo-orchitis in mice.

Experimental autoimmune epididymo-orchitis (EAEO) is a model of chronic inflammation, induced by immunisation with testicular antigens, which reproduces the pathology of some types of human infertility. Activins A and B regulate spermatogenesis and steroidogenesis, but are also pro-inflammatory, pro-fibrotic cytokines. Expression of the activins and their endogenous antagonists, inhibin and follistatin, was examined in murine EAEO. Adult untreated and adjuvant-treated control mice showed no pathology. All mice immunised with testis antigens developed EAEO by 50 days, characterised by loss of germ cells, immune cell infiltration and fibrosis in the testis, similar to biopsies from human inflamed testis. An increase of total CD45+ leukocytes, comprising CD3+ T cells, CD4 + CD8- and CD4 + CD25+ T cells, and a novel population of CD4 + CD8+ double positive T cells was also detected in EAEO testes. This was accompanied by increased expression of TNF, MCP-1 and IL-10. Activin A and B and follistatin protein levels were elevated in EAEO testes, with peak activin expression during the active phase of the disease, whereas mRNA expression of the inhibin B subunits (Inha and Inhbb) and activin receptor subunits (Acvr1b and Acvr2b) were downregulated. These data suggest that activin-follistatin regulation may play a role during the development of EAEO.

The Role of Activin A and B and the Benefit of Follistatin Treatment in Renal Ischemia-Reperfusion Injury in Mice.

BACKGROUND: Activins, members of the TGF-ß superfamily, are key drivers of inflammation and are thought to play a significant role in ischemia-reperfusion injury (IRI), a process inherent to renal transplantation that negatively impacts early and late allograft function. Follistatin (FS) is a protein that binds activin and inhibits its activity. This study examined the response of activin A and B in mice after renal IRI and the effect of exogenous FS in modulating the severity of renal injury. METHODS: Mice were treated with recombinant FS288 or vehicle before renal IRI surgery. Activin A, B, and FS levels in the serum and kidney, and renal injury parameters were measured at 3, 6, and 24 hours after reperfusion. RESULTS: Serum and kidney activin B levels were increased within 6 hours postrenal IRI, accompanied by renal injury-increased serum creatinine, messenger (m)RNA expression of kidney injury molecule-1 (KIM-1) and neutrophil gelatinase-associated lipocalin (NGAL); endothelial activation-increased E-selectin mRNA; and systemic inflammation-increased serum levels of IL-6, monocyte chemotactic protein-1 and TNF-α. Further injury was potentiated by an upsurge in activin A by 24 hours, with further increases in serum creatinine, KIM-1 and NGAL mRNA expression. Follistatin treatment significantly reduced the level of serum activin B and subsequently blunted the increase in activin A. Renoprotection was evident with the attenuated rise in serum creatinine, KIM-1 and NGAL expression, tubular injury score, renal cell apoptosis, and serum IL-6 and monocyte chemotactic protein-1 levels. CONCLUSIONS: We propose that activin B initiates and activin A potentiates renal injury after IRI. Follistatin treatment, through binding and neutralizing the actions of activin B and subsequently activin A, reduced renal IRI by minimizing endothelial cell activation and dampening the systemic inflammatory response. These data support the potential clinical application of FS treatment to limit IRI during renal transplantation.

Serum activin A and B levels predict outcome in patients with acute respiratory failure: a prospective cohort study.

INTRODUCTION: 30 day mortality in patients with Acute Respiratory Failure (ARF) is approximately 30%, defined as patients requiring ventilator support for more than 6 hours. Novel biomarkers are needed to predict patient outcomes and to guide potential future therapies. The activins A and B, members of the Transforming Growth Factor ß family of proteins, and their binding protein, follistatin, have recently been shown to be important regulators of inflammation and fibrosis but no substantial data are available concerning their roles in ARF. METHODS: Specific assays for activin A, B and follistatin were used and the results analyzed according to diagnostic groups as well as according to standard measures in intensive care. Multivariable logistic regression was used to create a model to predict death at 90 days and 12 months from the onset of the ARF. RESULTS: Serum activin A and B were significantly elevated in most patients and in most of the diagnostic groups. Patients who had activin A and/or B concentrations above the reference maximum were significantly more likely to die in the 12 months following admission [either activin A or B above reference maximum: Positive Likelihood Ratio [LR+] 1.65 [95% CI 1.28-2.12, P = 0.00013]; both activin A and B above reference maximum: LR + 2.78 [95% CI 1.96-3.95, P < 0.00001]. The predictive model at 12 months had an overall accuracy of 80.2% [95% CI 76.6-83.3%]. CONCLUSIONS: The measurement of activin A and B levels in these patients with ARF would have assisted in predicting those at greatest risk of death. Given the existing data from animal studies linking high activin A levels to significant inflammatory challenges, the results from this study suggest that approaches to modulate activin A and B bioactivity should be explored as potential therapeutic agents.