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1 – 10 of 944Bettina Riese and Raja A.S. Mukherjee
COVID-19 has been challenging for many in the UK. This is no different to many with autism spectrum disorder. Based on the experiences and issues raised by a small group of…
Abstract
Purpose
COVID-19 has been challenging for many in the UK. This is no different to many with autism spectrum disorder. Based on the experiences and issues raised by a small group of autistic women in an ongoing support group, consideration if this holds true for the wider adult autistic community across further lockdowns and restrictions to public life was explored.
Design/methodology/approach
An online questionnaire was created based on the issues raised. Participants indicated the degree to which they agreed or disagreed with each statement.
Findings
Autistic adults experienced an increase in anxiety and poor mental health, which in turn has exacerbated autistic features, such as rigidity. The data indicates that autistic adults can adapt to change provided there is support in maintaining routines.
Research limitations/implications
The research is limited due to the small number of participants (N = 120), as well as national variations in service provision.
Practical implications
Our data raises wider questions about the nature of support for autistic adults without cognitive impairments during times of crises and how services can respond and may even be shaped in the future to provide support that is cost-effective and relevant to autistic adults.
Social implications
To ensure that services have an awareness of how crises impact on autistic adults and how relatively simple changes may avert poor mental health.
Originality/value
That the creation of local support networks, and the ability to access these, is a key feature of autism-specific support.
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Phuong Nguyen, Viviana d'Auria and Ann Heylighen
This scoping review aims to (1) summarize research and design writings on residential design for adults on the autism spectrum in peer-reviewed and grey literature, (2) identify…
Abstract
Purpose
This scoping review aims to (1) summarize research and design writings on residential design for adults on the autism spectrum in peer-reviewed and grey literature, (2) identify research gaps in this field and (3) understand the concept of independent living based on this literature.
Design/methodology/approach
A systematic search was conducted in seven databases using 47 search terms related to residence, design and autism. It was supplemented with a manual search for recommended authors and architectural websites.
Findings
A final review of 37 sources highlighted that existing residential design guidelines are supported by weak evidence due to the lack of methods for involving and limited direct contact with autistic adults. Moreover, the needs of people living or working with them tend to be overlooked. Finally, the role of independent living has received little attention in the literature on residential design for adults on the spectrum.
Research limitations/implications
The findings show a need for taking on board autistic people's understanding of independent living. Future research about residential design for autistic adults should be conducted with them, in diverse housing settings, providing nuanced insight into their housing needs and those of the people around them.
Originality/value
This scoping review is the first to provide an overview of what is known about residential design for autistic adults with a focus on the concept of independent living.
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The purpose of this paper is to examine the prevalence of posttraumatic stress symptoms (PTSS) in adults and children who were exposed to applied behavior analysis (ABA) autism…
Abstract
Purpose
The purpose of this paper is to examine the prevalence of posttraumatic stress symptoms (PTSS) in adults and children who were exposed to applied behavior analysis (ABA) autism early childhood intervention. Using an online questionnaire to survey autistic adults and caregivers of autistic children, the author collected data from 460 respondents on demographics, intervention types, and current pathological behaviors with symptom severity scales. This study noted PTSS in nearly half of ABA-exposed participants, while non-exposed controls had a 72 percent chance of being asymptomatic. ABA satisfaction ratings for caregivers averaged neutral or mild satisfaction. In contrast, adult satisfaction with ABA was lower on average and also tended to take on either extremely low or extremely high ratings. Exposure to ABA predicted a higher rate and more severe PTSS in participants, but the duration of exposure did not affect satisfaction with the intervention in caregivers.
Design/methodology/approach
Participants were recruited for an online survey through social media networks, adult gatherings, social skills groups, and autism support groups nationwide. Adult inclusion criteria consisted of autism – diagnosed or self-diagnosed – and an age of 18 or older. A total of 460 respondents, consisting of autistic adults and caregivers of autistic children, completed an online survey. The caregiver entries (n=217) concerned 79 percent male children, 21 percent female children (male to female 3.80:1), and one MtF transgender child, ages 1-38, with an average age at diagnosis of 4.69 years. The adult entries (n=243) concerned 30 percent males, 55 percent females (male to female 0.55:1), and 14 percent other gender, ages 18-73, with an average age at diagnosis of 25.38 years.
Findings
Nearly half (46 percent) of the ABA-exposed respondents met the diagnostic threshold for PTSD, and extreme levels of severity were recorded in 47 percent of the affected subgroup. Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA. Adults and children both had increased chances (41 and 130 percent, respectively) of meeting the PTSD criteria if they were exposed to ABA. Both adults and children without ABA exposure had a 72 percent chance of reporting no PTSS (see Figure 1). At the time of the study, 41 percent of the caregivers reported using ABA-based interventions.
Originality/value
The majority of adult respondents were female, raising questions about the population of online autistic survey respondents. Further, the high numbers of reported gender other than male or female in the adult respondents, as well as at least on MtF child from the caregiver respondents indicates that future studies should consider these intersections. These accompanied significant discrepancies in reporting bias between caregivers and ABA-exposed individuals, which highlight the need for the inclusion of the adult autistic voice in future intervention design. Based on the findings, the author predicts that nearly half of ABA-exposed autistic children will be expected to meet the PTSD criteria four weeks after commencing the intervention; if ABA intervention persists, there will tend to be an increase in parent satisfaction despite no decrease in PTSS severity.
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Alexandra Schnabel and Clem Bastow
From the authors’ personal and professional experiences, they have observed that autistic women are uniquely at risk of interpersonal trauma. Given the tendency for autistic women…
Abstract
Purpose
From the authors’ personal and professional experiences, they have observed that autistic women are uniquely at risk of interpersonal trauma. Given the tendency for autistic women to be overlooked in research and practice, this study aims to rectify this by exploring the relevant literature and including the voices of autistic women throughout this paper.
Design/methodology/approach
This study completed a literature review of quantitative and qualitative data relating to exposure to interpersonal trauma in autistic women. This study also reviewed relevant discursive evidence available on in memoirs and reports. This study also included dialogue between us as authors from an auto/“Autie”-ethnographic position.
Findings
Both clinical literature and discursive evidence support the idea that autistic women are uniquely at risk of interpersonal trauma, in particular, sexual victimisation. Explanatory factors are considered. Studies exploring rates of post-traumatic stress disorder (PTSD) were less consistent. Further evidence is required to better understand how autistic women experience and express PTSD and to inform assessment and treatment modifications.
Originality/value
To the best of the authors’ knowledge, this is the first paper to integrate clinical literature and discursive evidence on the topic of interpersonal trauma in autistic women. It provides useful insights into the experiences of autistic women in this space, directions for urgently needed future research and modifications to clinical practice.
Carl Cameron and Abbey Townend
To determine the most appropriate and effective support to enable autistic people to gain and maintain employment in their chosen field. This paper aims to determine this and by…
Abstract
Purpose
To determine the most appropriate and effective support to enable autistic people to gain and maintain employment in their chosen field. This paper aims to determine this and by which methods are most suitable for this kind of support, with a focus on mentoring.
Design/methodology/approach
Mentoring is an intervention that has shown promise in assisting people who encounter barriers in finding work (for example, Roycroft, 2014). This research was conducted to determine whether the mentoring of autistic adults is effective in helping them to gain and maintain employment. The study examined the mentoring records of 90 autistic adults who were in receipt of funded mentoring with 18 separate organisations across England.
Findings
The authors found that the nationally recognised statistic of autistic people in full-time employment as 16% (National Autistic Society, 2016) was ambitious and subject to regional variation. Based on the results of a programme providing employment and mentoring support that is available and accessible to autistic people, however, outcomes improve and employment is more likely to be achieved and maintained – including in areas of, especially low employment. It was found that 48% of autistic job seekers who were supported by specialist mentors found paid employment (full-time or part-time), demonstrating a 16% increase in paid employment between those who received mentoring support and those who did not.
Research limitations/implications
A wider study across the UK would first determine if the nationally recognised figure is incorrect and also highlight those areas of the country which perform particularly well or badly.
Originality/value
This paper believes that this is the only research of it is kind in the UK and that it is a springboard for others who have greater resources available to them. This study is two very early-career academics on the autism spectrum with limited resources available to us.
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The need for advocacy for autistic adults is emphasised in many government policy and good practice guidelines. The purpose of this paper is to investigate legislation and policy…
Abstract
Purpose
The need for advocacy for autistic adults is emphasised in many government policy and good practice guidelines. The purpose of this paper is to investigate legislation and policy relevant to advocacy for autistic adults in England and explore whether this translates into practice. It also seeks to clarify which policies can be enforced under current legislation and highlight the gaps in legislative power to ensure implementation of good practice.
Design/methodology/approach
This paper aims to define what is meant by autism advocacy. Relevant legislation, including human rights, disability and autism-specific guidelines, are discussed in respect to autistic adults in England.
Findings
Implementation of autism advocacy policy appears to vary greatly according to local and individual resources.
Originality/value
Autistic adults, and services that support them, may be unaware of the policies and guidelines relevant to advocacy, they may also be confused by the plethora of different guidelines or unsure how to implement these. Further research is needed to review obstacles to the practical application of autism advocacy policy.
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The study aims to evaluate: (1) How university students from interior architecture can create a forward-looking “Sensory Living” brief informed by both external autism experts and…
Abstract
Purpose
The study aims to evaluate: (1) How university students from interior architecture can create a forward-looking “Sensory Living” brief informed by both external autism experts and a specialist tutor, evidenced through Leeds City Council's live autism adult accommodation project. (2) Issues involved with moving an experimental studio teaching model online during the COVID-19 pandemic.
Design/methodology/approach
A grounded theory approach informs an innovative teaching model, run over two years, to create a better normal; challenges and opportunities are critiqued.
Findings
Feedback from experienced autism-specific experts raises recurring sensory and communication issues which frame a series of design problems to help inform the student briefs. Students learn that the designer as advocate for vulnerable users is imperative. Aspects of online teaching that can benefit an experimental studio teaching model are identified.
Practical implications
Identification of the responsive “Sensory Living Model” illustrates (1) How local authorities can avoid seclusion and integrate meaningful “continuous learning opportunities” into autism-friendly adult accommodation for post-pandemic health and wellbeing. (2) How to embed autism-friendly design in the university curriculum.
Social implications
The study helps address some of the UK Government's “National strategy for autistic children, young people and adults: 2021 to 2026”.
Originality/value
“Ten Novel Sensory Living Themes” are uncovered to help inform the design of autism-friendly adult accommodation. These are of value to (1) local authorities and design practitioners in formulating design briefs and (2) universities in educating future designers of inclusive spaces.
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This paper aims to investigate the long-term impacts autistic adults experienced from childhood participation in the applied behavioural analysis (ABA).
Abstract
Purpose
This paper aims to investigate the long-term impacts autistic adults experienced from childhood participation in the applied behavioural analysis (ABA).
Design/methodology/approach
Possible participants were recruited through advertisements on social media and autism and ABA organisations. Possible participants were given the choice between an online or face-to-face interview or an anonymised online questionnaire.
Findings
Reflections from 10 participants were indicative of a predominantly detrimental impact of ABA. Reflections gave rise to a core theme “recalling hidden harms of childhood experiences of ABA”. Outcomes are discussed in relation to the impact on autistic identity, current research and progressing understanding of the impacts of early intervention from the autistic perspective.
Research limitations/implications
The practical implications of ABA are discussed alongside recommendations for future practice and research with the involvement of autistic individuals within interventive processes.
Originality/value
This is the first paper to take an in-depth, qualitative approach to autistic experiences of ABA. The findings themselves are driven to conceptualise and give voice to the core impacts which carried through participants’ exploration and understanding of self.
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The purpose of this paper is to review the barriers that girls and women face in receiving an accurate and timely autism diagnosis. The journey to late-in-life diagnosis will be…
Abstract
Purpose
The purpose of this paper is to review the barriers that girls and women face in receiving an accurate and timely autism diagnosis. The journey to late-in-life diagnosis will be explored with a focus on mental health and well-being. The aim is to improve the awareness of the female autism phenotype to provide access to early identification and appropriate supports and services.
Design/methodology/approach
The author’s clinical experience as an individual, couple and family therapist specializing in girls and women with autism informs the paper. Research on co-occurring mental health experience and diagnoses are reviewed and combined with case examples to outline the themes leading to and obscuring autism diagnosis.
Findings
Females with autism are less likely to be diagnosed or are identified much later than their male counterparts. Living with unidentified autism places significant mental strain on adults, particularly females. Achieving a late-in-life diagnosis is very valuable for adults and can improve self-awareness and access to limited support.
Practical implications
Mental health professionals will develop a better understanding of the overlap between autism and psychiatric conditions and should consider autism in females who are seeking intervention.
Originality/value
This paper provides a clinical approach to working with autistic girls and women. This knowledge can complement the existing research literature and help build the foundation for a greater understanding of the female autism phenotype.
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Felicity Sedgewick, Jenni Leppanen and Kate Tchanturia
Mental health conditions are known to be more common amongst autistic than non-autistic people. To date, there is little work exploring gender differences in mental health amongst…
Abstract
Purpose
Mental health conditions are known to be more common amongst autistic than non-autistic people. To date, there is little work exploring gender differences in mental health amongst autistic people and no work including non-binary/trans people. This paper aims to address this gap.
Design/methodology/approach
This was a large-scale online study, with 948 participants between 18 and 81 years old. Participants self-reported autism, anxiety, depression and eating disorder status. Analyses were run examining gender differences in the rates of these conditions in each group.
Findings
Autistic people are more likely to have anxiety and depression than non-autistic people of all genders. Autistic women and non-binary people experienced mental health issues at higher rates than men and at similar rates to each other. Autistic people were twice as likely as non-autistic people to have all eating disorders. Further, gendered patterns of eating disorders seen in the non-autistic population are also present in the autistic population.
Research limitations/implications
There are inherent issues with self-report of diagnoses online, but this study showed that using screening questionnaires is effective.
Originality/value
This is the first paper to look at gender differences in common mental health issues amongst autistic and non-autistic adults. It highlights that there are significant gendered patterns in the prevalence of mental health issues in both the autistic and non-autistic population and that these have an impact for how treatment should be approached to be effective.
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