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1.
Autism Res ; 17(3): 626-636, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38031639

ABSTRACT

It is frequently reported that females are likely to receive an autism diagnosis at a later age than their male counterparts, despite similar levels of autistic traits. It has been suggested that this delay in diagnosis may in part reflect the propensity of females, more than males, to engage in camouflaging behaviors that reduce the appearance of autism-related traits. This article presents two studies which examined the relationship between gender/sex, camouflaging, and age at diagnosis in two samples of (cis-gender) autistic adults. Study 1 included data from three online samples including 242 autistic men and 570 autistic women aged 18-75 years. Study 2 included data from a longitudinal population-based sample including 24 autistic men and 35 autistic women aged 20-24 years. Camouflaging was measured with the self-report Camouflaging Autistic Traits Questionnaire (CAT-Q). Overall, the results showed that, on average, females were diagnosed later than males. There was a stronger relationship between camouflaging and age at autism diagnosis (AaD) for females, compared with males. Within sample one, there was a significant camouflaging-by-sex interaction; high-camouflaging females had a later AaD. The role of autistic traits and changes in attitudes towards female autism and camouflaging need further exploration. These findings highlight the need for greater clinician and key stakeholder awareness and understanding of camouflaging behavior, particularly for females, during the diagnostic process.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Adult , Humans , Male , Female , Autistic Disorder/diagnosis , Autism Spectrum Disorder/diagnosis , Social Behavior , Surveys and Questionnaires , Self Report
2.
Autism ; 27(2): 552-564, 2023 02.
Article in English | MEDLINE | ID: mdl-35791666

ABSTRACT

LAY ABSTRACT: The COVID-19 pandemic meant that a lot of healthcare services had to move online, such as to video-calls, or to telephone. However, not many studies have looked at how autistic adults feel about this kind of service delivery. It is important to know this, as autistic people may have poorer health than non-autistic people, and they may also struggle to access services more than non-autistic people. This study asked 11 autistic adults (aged 27-67 years), seven family members/carers (aged 44-75) reporting about autistic adults and six service providers about their experiences of accessing or providing a telehealth service. These experiences were collected through interviews, which were then analysed through thematic analysis. Two main themes were: technology aids communication and access - except when it doesn't, and in/flexibility. The themes pointed out some positive aspects of telehealth delivery, including improved communication and decreased stress. The themes also pointed out negative aspects of telehealth, such as increased rigidity of the healthcare system, amplifying pre-existing barriers. Because autistic people have many barriers to accessing healthcare, this study encourages researchers and healthcare providers to think about how such barriers could be addressed through telehealth, and about the possible limitations of telehealth for some autistic people.


Subject(s)
Autism Spectrum Disorder , COVID-19 , Telemedicine , Adult , Humans , Pandemics , Technology
3.
Pain ; 164(3): 469-484, 2023 03 01.
Article in English | MEDLINE | ID: mdl-36265391

ABSTRACT

ABSTRACT: Blinding is challenging in randomised controlled trials of physical, psychological, and self-management therapies for pain, mainly because of their complex and participatory nature. To develop standards for the design, implementation, and reporting of control interventions in efficacy and mechanistic trials, a systematic overview of currently used sham interventions and other blinding methods was required. Twelve databases were searched for placebo or sham-controlled randomised clinical trials of physical, psychological, and self-management treatments in a clinical pain population. Screening and data extraction were performed in duplicate, and trial features, description of control methods, and their similarity to the active intervention under investigation were extracted (protocol registration ID: CRD42020206590). The review included 198 unique control interventions, published between 2008 and December 2021. Most trials studied people with chronic pain, and more than half were manual therapy trials. The described control interventions ranged from clearly modelled based on the active treatment to largely dissimilar control interventions. Similarity between control and active interventions was more frequent for certain aspects (eg, duration and frequency of treatments) than others (eg, physical treatment procedures and patient sensory experiences). We also provide an overview of additional, potentially useful methods to enhance blinding, as well as the reporting of processes involved in developing control interventions. A comprehensive picture of prevalent blinding methods is provided, including a detailed assessment of the resemblance between active and control interventions. These findings can inform future developments of control interventions in efficacy and mechanistic trials and best-practice recommendations.


Subject(s)
Chronic Pain , Self-Management , Humans , Chronic Pain/therapy
4.
Pain ; 164(3): 509-533, 2023 03 01.
Article in English | MEDLINE | ID: mdl-36271798

ABSTRACT

ABSTRACT: Sham interventions in randomized clinical trials (RCTs) of physical, psychological, and self-management (PPS) therapies for pain are highly variable in design and believed to contribute to poor internal validity. However, it has not been formally tested whether the extent to which sham controls resemble the treatment under investigation consistently affects trial outcomes, such as effect sizes, differential attrition, participant expectancy, and blinding effectiveness. Placebo- or sham-controlled RCTs of PPS interventions of clinical pain populations were searched in 12 databases. The similarity of control interventions to the experimental treatment was rated across 25 features. Meta-regression analyses assessed putative links between employed control interventions, observed effect sizes in pain-related outcomes, attrition, and blinding success. The sample included 198 unique control interventions, dominated by manual therapy and chronic musculoskeletal pain research. Meta-analyses indicated small-to-moderate benefits of active treatments over control interventions, across subgroups of manual therapies, exercise, and rehabilitation, and psychological intervention trials. Multiple meta-regression modelling demonstrated that similarity between sham control and tested interventions predicted variability in pain-related outcomes, attrition, and blinding effectiveness. Influential variables were differences relating to the extent of intervention exposure, participant experience, and treatment environments. The results support the supposed link between blinding methods and effect sizes, based on a large and systematically sourced overview of methods. However, challenges to effective blinding are complex and often difficult to discern from trial reports. Nonetheless, these insights have the potential to change trial design, conduct, and reporting and will inform guideline development.


Subject(s)
Chronic Pain , Self-Management , Humans , Chronic Pain/therapy , Chronic Pain/psychology , Exercise , Exercise Therapy/methods , Physical Examination
5.
Autism Adulthood ; 3(2): 195-203, 2021 Jun 01.
Article in English | MEDLINE | ID: mdl-36601467

ABSTRACT

This article explores coproduction in relation to autistic people. We reflect on the coproduction process with autistic adults from the Authentistic Research Collective at University College London. We aimed to support the autistic population's mental health needs by coproducing a document on adapting psychological therapy, and by developing a set of reflective guidelines to guide and encourage future coproduction initiatives between autistic and nonautistic team members. We reflect upon six elements that are of potential importance for future coproduction projects with autistic adults: (1) the meaning of coproduction; (2) ground rules and a traffic light system; (3) environmental adaptations; (4) digital communication tools; (5) encouraging authenticity; and (6) supporting autistic strengths. We conclude by discussing future research avenues into optimizing coproduction with autistic people, and how such research may influence both practice and policy. Lay summary: Why is coproduction important?: Coproduction means creating things jointly with others. Ideally, autistic people should be involved in research that is about them so that their thoughts and opinions are included. Coproduction allows this to happen.What is the purpose of this article?: There is little advice for how autistic and nonautistic people can work together to coproduce useful research. This article hopes to encourage discussion by sharing our reflections on how we used coproduction in our project.What did we do?: Our group was made up of autistic and nonautistic people. One of our goals was to gain experience in using coproduction. We created this article containing our reflections-what we found worked well, and what we felt could be done differently in the future.What did we learn?: We learnt the importance of five key areas: (1) group rules, and a "traffic light" system to help group members show how they like to communicate; (2) adapting the environment to suit people's needs; (3) inclusion of digital communication tools; (4) encouraging group members to feel they are authentic (be fully themselves); and (5) supporting autistic strengths. We hope that the discussion of these themes will be helpful for future coproduction projects.

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