Aging well on the autism spectrum: the perspectives of autistic adults and carers

2017 ◽  
Vol 29 (12) ◽  
pp. 2033-2046 ◽  
Author(s):  
Ye In (Jane) Hwang ◽  
Kitty-Rose Foley ◽  
Julian N. Trollor
Keyword(s):  
Well Being ◽  
Autism Spectrum ◽  
Structured Interviews ◽  
Autistic Individual ◽  
Diverse Range ◽  
Building Capacity ◽  
Face To Face ◽  
Living Well ◽  
Aging Well ◽  
Autistic Adults

ABSTRACTBackground:“Aging well” is an increasingly popular concept in gerontology. Adults with disabilities such as autism spectrum disorder represent a demographically substantial population, yet remain excluded from existing conceptualizations of aging well. This qualitative study aimed to explore what it means for autistic adults to “age well” from the perspectives of autistic adults and carers.Methods:Twenty-four semi-structured interviews were conducted with 15 autistic adults (mean age 50.3 years) and 9 carers of autistic adults. Interviews were offered in four formats: email, telephone, Skype, and face-to-face and included three questions exploring what it means for autistic adults to age well as well as what might help or hinder them from aging well.Results:Aging well was found to be a multifaceted concept that encompassed the autistic individual, others, the world they live in, and relational issues connecting these domains. Thematic analysis revealed eight themes to be common across participants’ responses: “myself,” “being autistic,” “others,” “lifestyle and living well,” “being supported,” “relating to others,” “life environment,” and “societal attitudes and acceptance.”Conclusions:In line with previous studies, a more diverse range of personal and environmental factors should be included in conceptualizing aging well. In contrast to dominant perspectives, being autistic was not considered a hindrance to aging well. Rather, social and relational issues were central and unique to aging well for autistic adults. Implications include the need to address societal attitudes towards autism and building capacity and understanding in those who are both formally and informally involved in the lives of autistic adults.

scholarly journals Sensory Integration Therapy Versus Usual Care for Sensory Processing Difficulties in Autism Spectrum Disorder in Children: Study Protocol for a Pragmatic Randomised Controlled Trial

2019 ◽  
Author(s):  
Elizabeth Randell ◽  
Rachel McNamara ◽  
Sue Delport ◽  
Monica Busse ◽  
Richard Hastings ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Usual Care ◽  
Sensory Processing ◽  
Sensory Integration ◽  
Controlled Trial ◽  
Well Being ◽  
Autism Spectrum ◽  
Face To Face ◽  
Sensory Integration Therapy ◽  
Randomised Controlled

Abstract Background: Autism Spectrum Disorder (ASD) is a common lifelong condition affecting 1 in 100 people. ASD affects how a person relates to others and the world around them. Difficulty responding to sensory information (noise, touch, movement, taste, sight) is common, and might include feeling overwhelmed or distressed by loud or constant low-level noise (e.g. in the classroom). Affected children may also show little or no response to these sensory cues. These ‘sensory processing difficulties’ are associated with behaviour and socialisation problems, and affect education, relationships, and participation in daily life. Sensory Integration Therapy (SIT) is a face-to-face therapy or treatment, provided by trained occupational therapists who use play -based sensory-motor activities and the just-right challenge to influence the way the child responds to sensation, reducing distress, and improving motor skills, adaptive responses, concentration and interaction with others. With limited research into SIT, this protocol describes in detail how the intervention will be defined and evaluated. Methods: Two-arm pragmatic individually 1:1 Randomised Controlled Trial (RCT) with internal pilot of SIT versus Usual Care (UC) for primary school aged children (4 to 11 years) with ASD and Sensory Processing (SP) difficulties. 216 children will be recruited from multiple sources. Therapy will be delivered in clinics meeting full fidelity criteria for manualised SIT over 26 weeks (face-to-face sessions: 2 per week for 10 weeks, 2 per month for 2 months; Telephone call: 1 per month for 2 months). Follow up assessments will be completed at 6 and 12 months post randomisation. Prior to recruitment: therapists will be invited to participate in focus groups/interviews to explore what is delivered as usual care in trial regions; carers will be invited to complete an online survey to map out their experience of services. Following recruitment: carers will be given diaries to record their contact with services. Following intervention, carer and therapist interviews will be completed. Discussion: Results of this trial will provide high quality evidence on the clinical and cost-effectiveness of SIT aimed at improving behavioural, functional, social, educational and well-being outcomes for children and well-being outcomes for carers and families. Trial registration: ISRCTN14716440. Registered 08/11/2016. http://www.isrctn.com/ISRCTN14716440

Autism Spectrum Disorders in Later Life

2018 ◽  
Author(s):  
Ye In (Jane) Hwang ◽  
Kitty-Rose Foley ◽  
Samuel Arnold ◽  
Julian Trollor
Keyword(s):  
Neurodevelopmental Disorder ◽  
Early Adulthood ◽  
Biological Marker ◽  
Later Life ◽  
Well Being ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Childhood And Adolescence ◽  
Physical And Mental Health ◽  
Autistic Adults

Autism spectrum disorder (ASD), or autism, is a neurodevelopmental disorder that is typically recognized and diagnosed in childhood. There is no established biological marker for autism; rather, the diagnosis is made based on observation of behavioral traits, including (a) persistent deficits in social interaction and communication, and (b) restricted, repetitive patterns of behavior, interests, or activities. Because autism is a spectrum disorder, autistic individuals are a highly heterogeneous group and differ widely in the presentation and severity of their symptoms. The established prevalence of ASD is approximately 1% of the population. Information about autism in adulthood is limited; most of the literature examines childhood and adolescence. While the term “later life” has traditionally been associated with those over the age of 65, a dire lack of understanding exists for those on the autism spectrum beyond early adulthood. Individuals remain on the spectrum into later life, though some mild improvements in symptoms are observed over time. Autistic adults experience high levels of physical and mental health comorbidities. Rates of participation in employment and education are also lower than that of the general population. Quality of life is reportedly poorer for autistic adults than for nonautistic peers, though this is not affected by age. More robust studies of the health, well-being, and needs of autistic adults are needed, especially qualitative investigations of adulthood and aging and longitudinal studies of development over the lifespan.

scholarly journals “We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Caroline Jose ◽  
Patricia George-Zwicker ◽  
Louise Tardif ◽  
Aaron Bouma ◽  
Darlene Pugsley ◽  
...  
Keyword(s):  
Design Research ◽  
Service Providers ◽  
Well Being ◽  
Research Process ◽  
Autism Spectrum ◽  
Project Leadership ◽  
Team Meetings ◽  
Autistic Adults ◽  
Data Gap ◽  
Multi Stakeholder

Abstract Background Little research describes the everyday challenges and needs of autistic adults. In order to fill this data gap, the CONtiNuity of carE and support for autistiC adulTs (CONNECT) project set out to learn about the health and well-being of autistic adults as well as their service and support needs. To do so, CONNECT welcomed autistic adults and caregivers of autistic adults as members of the research team, alongside researchers, policy-makers, service providers and health professionals. Autistic adults were involved in every stage of the research project and participated in team meetings held several times a year as well as in numerous email exchanges. Methods Two feedback questionnaires were designed for this study: one for the scientific co-researchers and one for the autism community co-researchers (the project’s “patient partners”). Although the surveys varied from one another, they probed respondents to provide critical and constructive comments on issues that were central to their engagement in CONNECT. Four scientific co-researchers and four autism community co-researchers filled out the questionnaires. A comparative analysis was carried out on the responses provided to the open- and closed-ended survey questions as well as on complimentary data collected from the team’s documents. Results CONNECT was seen as a positive experience for both groups. Highlights included: helping tailor and design research and its relevant materials to better suit the needs of the autistic community; establishing relationships and creating long-lasting friendships with other autistic adults; gaining a better understanding of the research process; and forging new connections with regional, national and international stakeholders. Areas for improvement include: establishing clear roles, responsibilities and expectations from the start; outlining a strategy to address unforeseen changes in project leadership; and creating a platform allowing for the involvement and participation of a more representative sample of adults on the autism spectrum. Conclusions While not without its challenges, CONNECT demonstrates that a collaborative multi-stakeholder approach engaging autistic adults can be an effective model for conducting research on adult autism. Autistic adults and their caregivers can make the research process more open and accessible and make its outputs more relevant, useful and meaningful to the wider autistic adult community.

scholarly journals Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers: a qualitative interview study

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e044724
Author(s):  
Cathryn Pinto ◽  
Adam W A Geraghty ◽  
Lucy Yardley ◽  
Laura Dennison
Keyword(s):  
Emotional Distress ◽  
Well Being ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Psychological Interventions ◽  
Structured Interviews ◽  
Face To Face ◽  
Qualitative Interview Study ◽  
The Uk ◽  
Broad Understanding

ObjectiveWe aimed to get an in-depth understanding of the emotions experienced by people with motor neurone disease (MND) and their caregivers, and to explore what impacts emotional distress and well-being.DesignQualitative study using semi-structured interviews with people with MND and caregivers.SettingParticipants were recruited from across the UK and took part in interviews conducted either face to face, by telephone or email to accommodate for varying levels of disability.Participants25 people with MND and 10 caregivers took part. Participants were purposively sampled based on their MND diagnosis, symptoms and time since diagnosis.Data analysisData were analysed using inductive reflexive thematic analysis.ResultsEight broad themes were generated (20 subthemes). Participants described the emotional distress of losing physical function and having a threatened future because of poor prognosis. Keeping up with constant changes in symptoms and feeling unsupported by the healthcare system added to emotional distress. Finding hope and positivity, exerting some control, being kinder to oneself and experiencing support from others were helpful strategies for emotional well-being.ConclusionThe study provides a broad understanding of what impacts emotional distress and well-being and discusses implications for psychological interventions for people with MND and caregivers. Any communication and support provided for people with MND and their caregivers, needs to pay attention to concepts of hope, control and compassion.

scholarly journals Older People’s Experiences of Living with, Responding to and Managing Sensory Loss

Healthcare ◽  
2021 ◽  
Vol 9 (3) ◽  
pp. 329
Author(s):  
I Ching Ho ◽  
Lynn Chenoweth ◽  
Anna Williams
Keyword(s):  
Well Being ◽  
Community Dwelling ◽  
Sensory Function ◽  
Sensory Loss ◽  
Structured Interviews ◽  
Convenience Sample ◽  
Face To Face ◽  
Sensory Impairments ◽  
Remedial Actions ◽  
Sensory Changes

(1) Background: Ageing is associated with a decline in sensory function (sight, hearing, taste, touch and smell), which play an important role in the maintenance of an older person’s health, independence and well-being. (2) Methods: This qualitative study obtained data through face-to-face semi-structured interviews with a convenience sample of thirteen community-dwelling adults 65 years and older. Themes were derived inductively, guided by semi-structured interviews. (3) Results: Twelve participants had two or more sensory impairments, mainly concurrent hearing and vision, which became apparent when a situation/individual alerted them to change/s occurring. They were less aware of impaired smell, taste and touch. Sensory changes impacted on important life functions, prompting many participants to take measured risks in maintaining their independence. Half (seven) of the participants lacked motivation to manage sensory function through goal-directed behaviour, taking remedial actions only when this was relevant to lifestyle preferences. (4) Conclusions: Internal and/or external triggers of sensory changes did not generally motivate remedial action. Health professionals can help to improve older people’s attention to sensory impairment by routinely discussing sensory function with them, screening for sensory changes and facilitating early intervention and support.

scholarly journals ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood

Autism ◽  
2019 ◽  
Vol 24 (1) ◽  
pp. 135-146 ◽  
Author(s):  
Alexandra Leedham ◽  
Andrew R Thompson ◽  
Richard Smith ◽  
Megan Freeth
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Well Being ◽  
Autism Spectrum ◽  
The Self ◽  
Autism Spectrum Condition ◽  
Structured Interviews ◽  
Late Adulthood ◽  
Spectrum Condition ◽  
Fitting In ◽  
The Impact

Females often receive autism spectrum condition diagnoses later than males, leaving needs misunderstood. This study aimed to explore the lived experiences of female adults diagnosed with an autism spectrum condition in middle to late adulthood. Eleven autistic females diagnosed over the age of 40 years completed semi-structured interviews, analysed using Interpretative Phenomenological Analysis. Four superordinate themes emerged: A hidden condition (pretending to be normal and fitting in; mental health and mislabelling), The process of acceptance (initial reactions and search for understanding; re-living life through a new lens), The impact of others post-diagnosis (initial reactions; stereotyped assumptions), and A new identity on the autism spectrum (negotiating relationships, connections and community; changing well-being and views of the self; the meaning of diagnosis). Findings highlight several factors not previously identified that affect late diagnosis in females, including widespread limited understandings of others. Diagnosis was experienced by several participants as facilitating transition from being self-critical to self-compassionate, coupled with an increased sense of agency. Participants experienced a change in identity that enabled greater acceptance and understanding of the self. However, this was painful to adjust to at such a late stage.

scholarly journals Essential core competencies for health policy doctoral graduates

2020 ◽  
Author(s):  
leila Doshmangir ◽  
Amirhossein Takian ◽  
Minoo Alipouri Sakha ◽  
Hakimeh Mostafavi
Keyword(s):  
Health Policy ◽  
Doctoral Students ◽  
Research Policy ◽  
Core Competencies ◽  
Health Sector ◽  
Well Being ◽  
Structured Interviews ◽  
Doctoral Graduates ◽  
Face To Face ◽  
Specific Order

Abstract Background: In the health sector, competency-based education focuses on the desired performance characteristics of health professionals through designing and implementing the evidence-based standards, performance indicators and, quality outcomes. This paper aims to explore core competencies required for health policy graduates, aiming to prepare doctoral students for a spectrum of future roles, i.e. academic and non-academic.Methods: The databases including PubMed, Scopus, Google scholar, and SID were searched to identify the required competencies for health policy students worldwide. Students and well-known academics in the field of health policy (from Iran and other countries) were interviewed. This qualitative study was conducted in three phases: a critical review of literature; interviews; and validation of identified competencies through face to face consultations with experts complemented by a survey. We used three methods for data collection: 1) review of the literature; 2) 74 face to face and email-based semi-structured interviews and 3) validating the identified competencies through face to face consultations with qualified experts. Results: We identified five core competencies for health policy doctoral graduates without specific order including research, policy analysis, education, decision making, and communication.Conclusions: As countries are gearing up towards sustainable development goals (SDGs), the role of health policy graduates is crucial paving the pathway towards SDGs on health and well-being. Appropriate and contextually-tailored curriculum is pivotal, we envisage, to foster multi-dimensional competencies that are complementary to the specific disciplines of health policy scholars of future, those who can genuinely serve their health systems towards sustainable health development.

Parents of children with autism spectrum disorder’s perception on parent-implemented home-based developmental, individual-difference and relationship (DIR)/Floortime® intervention

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Iylia Dayana Shamsudin ◽  
Ted Brown ◽  
Mong-Lin Yu ◽  
Primrose Lentin
Keyword(s):  
Individual Difference ◽  
Intervention Program ◽  
Qualitative Content Analysis ◽  
Children With Autism ◽  
Well Being ◽  
Autism Spectrum ◽  
Structured Interviews ◽  
Content Type ◽  
Children With Asd ◽  
Home Based

Purpose The developmental, individual-difference and relationship (DIR)/Floortime® approach is a commonly used parent-implemented intervention with children with autism spectrum disorder (ASD). Currently, no evidence is available about the intervention’s implementation and utility in Malaysia. The aim of this paper is to investigate the applicability and impact of implementing the parent-implemented home-based DIR/Floortime® intervention program for children with ASD and their parents in a Malaysian context from parents’ perspectives. Design/methodology/approach A qualitative study using semi-structured interviews with eight mothers and four fathers of children with ASD was conducted. The interviews were analysed using qualitative content analysis. Findings Five themes were developed. Theme 1 described the implementation of DIR/Floortime® intervention; Theme 2 reported challenges parents faced when implementing the intervention; Theme 3 explored parents’ perspective on play; Theme 4 explained the improvements and changes in children with ASD and parents’ abilities and skills; and Theme 5 reported parents’ comments and suggestions about the intervention program. Research limitations/implications Involvement of a limited number of participants and an absence of baseline data limits the interpretation of the impacts of the DIR/Floortime® program’s implementation by parents with their children with ASD. Originality/value Utilization of DIR/Floortime® intervention is practical and appropriate in the Malaysian context. From the parents’ perspective, the DIR/Floortime® approach was beneficial for children with ASD and parents’ skill development and well-being. Further refinement to the program and involvement of participants from various cultural backgrounds are recommended. A greater emphasis for parents on child-led interaction style and play with children are also recommended.

scholarly journals Impact of Coronavirus 2019 on Students with Special Needs

2021 ◽  
Author(s):  
Ebrahim Rahbar Karbasdehi
Keyword(s):  
Special Needs ◽  
Emotional Disorders ◽  
Teaching And Learning ◽  
Disease Outbreaks ◽  
Well Being ◽  
Autism Spectrum ◽  
Children With Special Needs ◽  
School Closures ◽  
Students With Special Needs ◽  
Face To Face

Introduction: Emergency school closures are often used as public health interventions during infectious disease outbreaks to minimize the spread of infection. However, Over 80% of children in the world have had their education impacted by coronavirus. For children with special needs who receive special education services, access to face-to-face education and other resources at school is of particular importance. These services focus not only on academic achievement, but also on social, emotional, psychological and physical health and well-being. The American Academy of Pediatrics advocates for students to attend school in person. Students with special needs are divided into seven educational groups: hearing impairment, visual impairment, physical-motor disorders, intellectual disabilities, behavioral-emotional disorders, autism spectrum disorder, specific learning disorder, and severe and multiple disabilities. Each of these groups should have a different way of teaching and learning than other groups and normal students. For proper planning and accommodation of children with special needs, we must prioritize safety. In order for these students to be able to use rehabilitation services, face-to-face education conditions must be provided for them in accordance with health protocols.

scholarly journals The meaning and experience of well-being in dementia for psychiatrists involved in diagnostic disclosure: a qualitative study

2016 ◽  
Vol 29 (1) ◽  
pp. 93-104 ◽  
Author(s):  
A. Vince ◽  
C. Clarke ◽  
E. L. Wolverson
Keyword(s):  
Best Practice ◽  
Qualitative Methodology ◽  
Well Being ◽  
Perceived Threat ◽  
Subjective Experiences ◽  
Structured Interviews ◽  
Living Well ◽  
Best Practice Guidelines ◽  
Diagnostic Disclosure ◽  
Diagnosis Of Dementia

ABSTRACTBackground:Literature indicates that people's experiences of receiving a diagnosis of dementia can have a lasting impact on well-being. Psychiatrists frequently lead in communicating a diagnosis but little is known about the factors that could contribute to potential disparities between actual and best practice with regard to diagnostic disclosure. A clearer understanding of psychiatrists’ subjective experiences of disclosure is therefore needed to improve adherence to best practice guidelines and ensure that diagnostic disclosure facilitates living well with dementia.Methods:This study utilized qualitative methodology. Semi-structured interviews conducted with 11 psychiatrists were analyzed using Interpretive Phenomenological Analysis (IPA).Results:Three superordinate and nine subordinate themes emerged from the data analysis. These included the following: (i) “The levels of well-being” (Continuing with life, Keeping a sense of who they are, Acceptance of the self), (ii) “Living well is a process” (Disclosure can set the scene for well-being, Positive but realistic messages, Whose role it is to support well-being?), and (iii) Ideal care versus real care (Supporting well-being is not prioritized, There isn't time, The fragmentation of care).Conclusions:Findings indicate that psychiatrists frame well-being in dementia as a multi-faceted biopsychosocial construct but that certain nihilistic attitudes may affect how well-being is integrated into diagnostic communication. Such attitudes were linked with the perceived threat of dementia and limitations of post-diagnostic care. Behaviors used to manage the negative affect associated with ethical and clinical tensions triggered by attempts to facilitate well-being at the point of diagnosis, and their impact on adherence to best practice disclosure, are discussed.

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