Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities.

LAY ABSTRACT: Autistic young adults with intellectual disabilities want to be autonomous but are less autonomous than other people. However, they can be autonomous with appropriate support. We wanted to learn how we can support autistic adults with intellectual disabilities to be more autonomous. We designed our study with help from five autistic community partners to make sure the research was relevant to autistic people and would improve their lives. We talked with eight autistic young adults with intellectual disabilities about autonomy. We defined "talk" as verbal language, as well as non-verbal cues such as body language, facial expressions, vocalizations, and laughter. We did art projects and played games while we talked. We met in small groups over multiple sessions. Our participants told us that being autonomous meant being able to be themselves. They told us three main ways to support their autonomy: (1) having choice and control, (2) being able to communicate in their own way, and (3) being in a safe environment. Families, support staff, and caregivers can use this information to help autistic young adults with intellectual disabilities to be autonomous.

COVID-19 Pandemic Experiences of Families in Which a Child/Youth Has Autism and Their Service Providers: Perspectives and Lessons Learned.

PURPOSE: The impacts of the COVID-19 pandemic on autistic children/youth and their families and on service providers are not yet well-understood. This study explored the lived experiences of families with an autistic child and service providers who support them regarding the impacts of the pandemic on service delivery and well-being. METHODS: In this qualitative study, families and service providers (e.g., early intervention staff, service providers, school personnel) supporting autistic children/youth were interviewed. Participants were recruited from a diagnostic site and two service organizations that support autistic children/youth. RESULTS: Thirteen parents and 18 service providers participated in either an individual or group interview. Findings indicate challenges associated with pandemic restrictions and resulting service shifts. These challenges generally imposed negative experiences on the daily lives of autistic children/youth and their families, as well as on service providers. While many were adversely affected by service delivery changes, families and service agencies/providers pivoted and managed challenges. Shifts have had varied impacts, with implications to consider in pandemic planning and post-pandemic recovery. CONCLUSION: Results highlight the need for autism-focused supports, as well as technology and pandemic preparedness capacity building within health, therapeutic and educational sectors in order to better manage shifts in daily routines during emergencies such as a pandemic. Findings also offer instructive consideration in service delivery post-pandemic.

Psychosocial and Service Delivery Impacts of the COVID-19 Pandemic on Children With Respiratory Conditions, Their Parents and Their Health Care Providers.

The COVID-19 pandemic imposed widespread impacts on the health and well-being of children with respiratory challenges and their families, as well as on the health care system that supports them. An exploratory qualitative study was undertaken to examine how the pandemic impacted families' and health care providers' daily lives and experiences of care. Four youth, 12 parents and 7 health care providers participated in interviews via telephone or online technology. Content analysis of transcribed interviews revealed participant experiences, including initial responses to the pandemic, adjustment to pandemic shifts, and anticipation of the future. While deleterious physical health impacts were minimal for children with pre-existing respiratory conditions, their mental health was negatively impacted by the pandemic and related health protocols. Families and health care providers experienced strain, yet demonstrated resilience. Pandemic-related shifts profoundly impacted daily life at home, school, and work. Pediatric pandemic planning in clinical care is recommended to better address the needs of children with respiratory conditions and their families as well as pediatric health care providers.

An ecological systems model of employee experience in industry-led autism employment programmes.

LAY ABSTRACT: We asked 33 autistic adults from two industry-led employment programmes about their experiences in the programmes. These are programmes started by companies to recruit and support autistic people in work. We also asked about their workplace supports, relationships and how they thought the programme had impacted their life. Understanding the experiences of people in these industry-led employment programmes is important as the information can help to improve the programmes and participants' experiences. After reviewing the interviews, we found five themes that best described the employee's experience: (1) working involves multiple job tasks that evolve as the employment context changes; (2) relationships in the workplace are diverse and are influenced by the type of work participants do and the work environment; (3) workplace needs change as the autistic employees learn to navigate their work environment; (4) autistic employees develop a professional identity in the workplace as they master work and feel more integrated in the workplace; and (5) recommendations for the development of supportive workplace environments for autistic people. We explored the way that aspects of the two employment programmes (e.g. training) and factors outside the programme changed with time and contributed to the participant's experience. We developed a new model to capture individual and workplace factors that contribute to the experience of autistic people who participate in industry employment programmes.

Facilitators and barriers in psychotherapy from the perspective of autistic adults: an enhanced critical incident study.

PURPOSE: A significant portion of autistic adults experience mental health challenges. Currently, the literature is incomplete when it comes to understanding the needs and preferences of autistic adults who receive therapy. This study elicited the perspectives of autistic adults, focusing on the facilitators, barriers and ways to enhance psychotherapy based on receiving this care for mental health problems. METHODS: Using the qualitative, exploratory approach of the Enhanced Critical Incident Technique, eight autistic adults took part in interviews. RESULTS: A total of 147 critical incidents were extracted from participant interviews and categories salient to therapeutic practice. The study identified key factors influencing therapy, such as trust and respect, practical approaches, client factors, structure of sessions, knowledge about autism, support for individualized needs, access to mental health services, and involvement of family/advocate. These factors were categorized into eight main areas relevant to therapeutic practice. CONCLUSIONS: Findings from this research reveal that psychotherapy with autistic adults is analogous to performing this work with non-autistic adults, in the sense that this work too entails elements of individually tailored treatment and the reliance on common therapeutic factors. There are also differences in this work that necessitate providers having foundational knowledge about autism. Learning directly from autistic adults' insights may help to improve upon the delivery of mental health care for autistic adults.

Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic.

BACKGROUND: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. METHODS: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. RESULTS: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. CONCLUSION: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.

Mental Health Providers' Perspectives on What Helps and Hinders in Psychotherapy for Autistic Adults with Co-occurring Mental Health Problems.

Autistic adults experience disproportionate rates of co-occurring mental health problems. Psychotherapy has been recognized as an appropriate treatment approach, but evidence is limited. Researchers used a qualitative research paradigm to explore the experiences of mental health providers who provide psychotherapy to autistic adults. The Enhanced Critical Incident Technique was used to interview 13 mental health providers regarding perceptions of facilitating therapy with autistic adults. This research highlights challenges to providing psychotherapy to autistic adults while also illuminating ways that mental health providers have worked to ameliorate such challenges and create positive experiences in therapy. This research also contrasts therapy for autistic adults relative to the general population. Practice recommendations and suggestions for future research are offered.

Examining the experiences of pediatric mental health care providers during the early stage of the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic fundamentally impacted the way that mental health services were provided. In order to prevent the spread of infection, many new public health precautions, including mandated use of masks, quarantine and isolation, and closures of many in-person activities, were implemented. Public health mandates made it necessary for mental health services to immediately shift their mode of delivery, creating increased confusion and stress for mental health providers. The objective of this study is to understand the impact of pandemics on the clinical and personal lives of mental health providers working with children during the early months of the COVID-19 pandemic, March -June 2020. METHODS: Mental health providers (n = 98) were recruited using purposive sampling from a public health service in Canada. Using qualitative methods, semi-structured focus groups were conducted to understand the experiences of mental health service providers during the beginning of the COVID-19 pandemic. RESULTS: Data from the focus groups were analysed and three main themes emerged: (1) shift to virtual delivery and working from home; (2) concerns about working in person; (3) exhaustion and stress from working through the pandemic. DISCUSSION: This study gave voice to mental health providers as they provided continuity of care throughout the uncertain early months of the pandemic. The results provide insight into the impact times of crisis have on mental health providers, as well as provide practical considerations for the future in terms of supervision and feedback mechanisms to validate experiences.

Examining the Impacts of the COVID-19 Pandemic on Service Providers Working with Children and Youth with Neuro-developmental Disabilities and their Families: Results of a Focus Group Study.

The COVID-19 pandemic has imposed unprecedented service interruptions in many sectors including services for children and youth with neuro-developmental disabilities (NDD). We examined the experiences of service providers as they supported this population during the pandemic. Five focus groups were convened with 24 service providers offering support to children/youth with NDD and their families. Results highlight substantial service changes and challenges, as observed by service providers. Service closures and program delivery modification resulted in the rapid adoption of virtual services and reduced program delivery. Service providers have faced heightened workloads, personal weariness and 'burn out', and new levels of conflict at work, yet with little opportunity and support for self-care. Beyond challenges, new learning and growth have emerged, with heightened collaboration amongst organizations. Strains in service delivery during the pandemic have exposed programming and systems gaps, for which proactive capacity building is warranted and recommended.

'My Transplanted Self': Adolescent recipients' experience of post-traumatic growth following thoracic transplantation.

BACKGROUND: Despite heart and lung transplantation being life-saving therapies for children and adolescents, little research has focused on recipients' lived experience post-transplant. This study captures the subjective experiences of adolescent thoracic transplant recipients, providing insight into the impact of life changes following transplantation in this population. METHODS: A grounded theory approach guided an iterative process of data collection and data analysis. Adolescent heart and lung transplant recipients were recruited from a large Canadian pediatric teaching hospital to participate in one-on-one semi-structured interviews. Analysis using line-by-line coding and constant comparison methods facilitated reflection and agreement on categories and emergent themes. RESULTS: A total of 27 heart and 5 lung transplant recipients (66% female) participated at a median age of 15.9 years and a median time post-transplant of 2.7 years. Participant narratives illuminated three themes describing (1) personal growth - an awareness of personal strengths and coping abilities, (2) relationship growth - a greater appreciation for family and friends, and (3) introspective growth - a developing life philosophy. Findings suggest that adolescents experience an emergent 'transplanted self', positioning thoracic transplantation as a potential catalyst for positive growth and personal change. CONCLUSIONS: The study findings describe pediatric thoracic transplantation as potentially transformative in nature and sheds light on the application of post-traumatic growth theory. Practitioners and researchers are encouraged to acknowledge the possibility of growth, transformation, and positive change that may be possible within the adolescent thoracic transplant experience and leverage such strengths in clinical care.

Examining the COVID-19 pandemic and its impact on social work in health care.

Summary: This qualitative study examined the COVID-19 pandemic as experienced by healthcare-based social workers in relation to practice, and personal and professional impacts of providing care in this context, with recommendations for pandemic preparedness and response. A total of 12 focus groups were convened between June 2020 and March 2021, comprising 67 hospital social workers across multiple hospitals and other care facilities in western Canada. Findings: Based on an Interpretive Description approach, themes emerged reflecting practice shifts; increased work and changing roles; imposed restrictions; problems in communication and decision-making; distress, fear, and demoralization; and co-existing silver linings amid challenges. Applications: The COVID-19 pandemic has substantially impacted social workers and their delivery of service. Addressing concerns through proactive responsiveness, both during and beyond the pandemic, are important in nurturing patient-centered care and a supported workforce. Along with that of interdisciplinary colleagues in health care, social workers' practice has been profoundly impacted by the COVID-19 pandemic. This article explores the experiences of social workers in healthcare settings during the COVID-19 pandemic.

Mental health challenges during COVID-19: perspectives from parents with children with neurodevelopmental disabilities.

BACKGROUND: The global pandemic and subsequent denials, delays, and disruptions in essential daily activities created significant challenges for children with neurodevelopmental disorders (NDDs) and their parents. Public health restrictions during the COVID-19 pandemic limited access to supports and services required by children with NDDs to maintain their health and well-being. OBJECTIVE: This study sought to understand the impacts of these public health measures and restrictions on mental health from the perspective of parents with children with NDDs to inform pathways for public health policies responsive to the needs of this population. METHOD: Interpretive descriptive design was used to guide data collection and data analysis. Forty caregivers were interviewed about their experience with pandemic restrictions. FINDINGS: Generic policy measures contributed to many gaps in families' social support systems and contributed to mental health challenges for children and their parents. Four themes emerged: 1) lack of social networks and activities, 2) lack of access to health and social supports, 3) tension in the family unit, and 4) impact on mental health for children and their parents. RECOMMENDATIONS: Emergency preparedness planning requires a disability inclusive approach allocating resources for family supports in the home and community. Families identified supports to minimize further pandemic disruptions and enhance recovery.

The experiences of children with a cardiac transplant, their families and health care providers in the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has had deleterious impacts on pediatric patients and families, as well as the healthcare providers who have attended to their care needs. METHODS: In this qualitative study, children with a cardiac transplant, as well as their families and healthcare providers were interviewed to explore the impact of the COVID-19 pandemic on pediatric care, as well as on patients' and their families' daily lives. Participants were recruited from a children's hospital in western Canada. Fifteen caregiving parents of transplanted children, 2 young patients, and 8 healthcare providers participated in interviews. RESULTS: Findings highlighted how families and their healthcare providers experienced pandemic-related shifts. Themes highlighted experiences, which entailed (1) initially hearing about the COVID-19 pandemic; (2) learning about their new reality; (3) adjusting to the pandemic; (4) adjusting to shifts in pediatric services; (5) evolving a view on the future, and (6) offering recommendations for cardiac care in a pandemic. CONCLUSIONS: Study implications emphasize the need to critically reflect on, and advance, methods of helping young patients and their families in pandemic circumstances, and supporting healthcare providers.

A Qualitative Examination of the Impact of the COVID-19 Pandemic on Individuals with Neuro-developmental Disabilities and their Families.

Individuals with neuro-developmental disabilities (NDD) have been profoundly affected by the COVID-19 pandemic. Based on focus groups with 24 service providers supporting this population, using an Interpretive Description approach, we examined perceived impacts of the pandemic on individuals with NDD and their families. The results highlight pandemic-related experiences which include: service reduction, the need for financial supports, relying on natural supports, and school-related challenges. Interruptions in services have resulted in intensified mental health issues for individuals with NDD and family caregivers, with particular concern for those with added social determinants of health-related barriers. Mitigating factors have also emerged, such as resilience and technology utilization to facilitate communication. Recommendations for resource flexibility and sufficiency as well as navigational support are offered.

Mental health impacts of the COVID-19 pandemic on children with underlying health and disability issues, and their families and health care providers.

Objectives: The COVID-19 pandemic has impacted mental health at a population level. Families of children with health vulnerabilities have been disproportionately affected by pandemic-related policies and service disruptions as they substantially rely on the health and social care system. We elicited the impact of the COVID-19 pandemic on children with health and disability-related vulnerabilities, their families, and their health care providers (HCPs). Methods: Children with diverse health vulnerabilities (cardiac transplantation, respiratory conditions, sickle cell disease, autism spectrum disorder, mental health issues, and nearing the end of life due to a range of underlying causes), as well as their parents and HCPs, participated in semi-structured interviews. Data were analyzed using qualitative content analysis in determining themes related to impact and recommendations for practice improvement. Results: A total of 262 participants (30 children, 76 parents, 156 HCPs) were interviewed. Children described loneliness and isolation; parents described feeling burnt out; and HCPs described strain and a sense of moral distress. Themes reflected mental health impacts on children, families, and HCPs, with insufficient resources to support mental health; organizational and policy influences that shaped service delivery; and recommendations to enhance service delivery. Conclusion: Children with health vulnerabilities, their families and HCPs incurred profound mental health impacts due to pandemic-imposed public health restrictions and care shifts. Recommendations include the development and application of targeted pandemic information and mental health supports. These findings amplify the need for capacity building, including proactive strategies and mitigative planning in the event of a future pandemic.

"Realizing the problem wasn't necessarily me": the meaning of childhood adversity and resilience in the lives of autistic adults.

PURPOSE: There is evidence that childhood adversity is correlated with poor health outcomes across the lifespan. Resilience results when internal and external protective factors in childhood mitigate this relationship. However, among children on the autism spectrum, these relationships are understudied, and little is known about the characteristics and role of adversity and resilience in their in their lives. This study interprets these phenomena as experienced by autistic young adults. METHODS: Initially, we conducted community engagement with five members of the autism community who advised on the research question, research design, and analysis. Subsequently, four autistic young adults, three women and one non-binary, aged 19-27, were recruited to participate in semi-structured interviews via phone, video conference, and online chat. Credibility checking interviews followed data analysis. RESULTS: Through interpretative phenomenological analysis we identified themes related to the negative effects of adversity, including social disconnection, mental and emotional well-being, sense of self, and development into young adulthood. Resilience developed in places of refuge and identity and was evident in their transitions into young adulthood. CONCLUSION: These findings provide direction for decreasing adversity and fostering resilience in children and adolescents on the autism spectrum.

Acceptability of employment readiness measures in youth and young adults on the autism spectrum: a mixed-methods study.

PURPOSE: Reliable, valid, and pragmatic measures are essential for monitoring and evaluating employment readiness and comparing the effectiveness of alternative implementation strategies. The Work Readiness Inventory (WRI) and Ansell-Casey Life Skills Assessment (ACLSA) are valid measures of employment readiness in neurotypical populations; however, their acceptability (i.e., user perception of measure as agreeable/satisfactory) for persons on the autism spectrum is not yet known. This investigation assesses the acceptability of the WRI and a modified ACLSA (ACLSA-M) in measuring employment readiness in youth/young adults on the spectrum. METHODS: A concurrent triangulation mixed-methods study design utilizing quantitative pre-post measurement of a community-based employment readiness program alongside qualitative survey assessment was employed to determine concurrent acceptability. For robustness, further explication through peer debriefing of experts evaluated the retrospective acceptability via interview and acceptability-rate assessment. RESULTS: Findings indicated that both measures are acceptable, although individual- and job-specific item modifications are advised, particularly due to disability-specific needs. Significant change in employment readiness in youth/young adults on the spectrum supports concurrent acceptability. Peer debriefing provided rich data on retrospective acceptability. Acceptability-rates of 0.84 and 0.91 confirm broad acceptability of these measures. CONCLUSIONS: Implications are presented for clinicians and researchers, highlighting the relevance for autism-specific measurement development and acceptability.Implications for rehabilitationGiven the lower labor force participation of persons on the autism spectrum, a combination of measures should be used in the assessment of an individual's employment readiness.In youth and young adults on the spectrum, employment readiness can be measured using the Work Readiness Inventory (WRI) and a modified version of the Ansell-Casey Life Skills Assessment (ACLSA-M).In clinical practice and research, modifying the contents of these measures may be advised to minimize language complexity, and maximize ease in self report.When designing, developing, and testing new measures in rehabilitation practice or research, the intent should be broadened by involving diverse representation from the project outset, by engaging both those on the spectrum and neurotypical populations.

Strategies for Research, Practice, and Policy for Autism in Later Life: A Report from a Think Tank on Aging and Autism.

Over the past decade, there has been a growing interest in adults on the autistic spectrum, and more recently, the challenges related to aging in this population. A two-day Think Tank meeting, focused on aging in autism, was convened amongst international leaders in the field of autism research and practice. This meeting included a series of presentations addressing the current status of aging research, followed by discussions regarding priorities going forward. Attendees shared their thoughts and concerns regarding community services, government policies, societal perspectives and physical and mental health. The goal of these discussions was to consider systematic approaches aimed at providing meaningful supports that can ensure a quality of life for seniors on the autism spectrum.

Workplace Social Challenges Experienced by Employees on the Autism Spectrum: An International Exploratory Study Examining Employee and Supervisor Perspectives.

Social challenges represent a significantly under-researched area when it comes to the poor employment outcomes in autism. In this exploratory study employees on the autism spectrum (N = 29) and supervisors (N = 15), representing seven continents, provided 128 written examples of workplace-based social challenges, their interpretation, consequences and resolution. Content analysis revealed that types of social challenges were individually oriented or associated with the work-environment. Social challenges were frequently attributed to internal or personal factors with direct consequences for the employee. Resolutions were more frequently targeted toward the individual than the workplace, and hindered employees' experience of work. This international study represents a first look at the types of social challenges that impact equitable work participation of autistic people.