ORCID Profile
0000-0002-7909-4526
Current Organisation
Deakin University
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Publisher: CSIRO Publishing
Date: 13-05-2022
DOI: 10.1071/PY21134
Abstract: Background Autistic adults experience barriers to accessing health care, such as service provider communication not meeting their needs, healthcare facilities causing sensory discomfort and feeling fear or anxiety regarding their healthcare visit. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) developed and trialled an online healthcare toolkit to reduce such barriers and improve healthcare interactions between autistic adults and their primary care providers in the United States. This preliminary study aimed to explore experiences of autistic adults using the AASPIRE Healthcare Toolkit in Australia. Methods Semi-structured interviews were conducted with six autistic adults about their experiences and perceptions of utilising the toolkit in an Australian healthcare setting. Results Participants identified that the toolkit facilitated their interactions with health professionals by providing structure to appointments, supplementing new knowledge and increasing in idual confidence. They also offered suggestions to tailor the toolkit for use in Australia. Conclusions Future research should seek to explore the experiences of autistic adults using a version of the toolkit adapted for Australian use, as well as exploring the views of health professionals utilising it.
Publisher: Mary Ann Liebert Inc
Date: 06-2019
Publisher: SAGE Publications
Date: 06-08-2022
DOI: 10.1177/13623613211035936
Abstract: The COVID-19 pandemic and its policy responses have had a detrimental effect on millions of people’s mental health. Here, we investigate its impact on autistic people and their families using qualitative methods. Specifically, we addressed: how did autistic people experience an increase in social isolation during the initial lockdown? And how was their mental health impacted by lockdown? Autistic and non-autistic researchers conducted 144 semi-structured interviews with autistic adults (n = 44), parents of autistic children (n = 84) including autistic parents and autistic young people (n = 16). We deployed thematic analysis to identify key themes. The enhanced social isolation accompanying the pandemic had a serious and damaging impact on autistic people’s mental health and subjective wellbeing. They spoke of intensely missing friends and more incidental forms of social connection. They also reported intense dissatisfaction with the substitution of embodied, person-to-person connection in health services by online/telephone-based alternatives, sometimes accompanied by serious negative consequences. These findings reveal the fundamental importance of supporting autistic people to maintain direct and incidental social contact during the pandemic and beyond. They speak against established theories that downplay autistic people’s need for human connection and the extent to which they have been affected by social isolation during lockdowns. In this study, we show that autistic people and their families have found it very difficult to deal with the lockdowns during the COVID-19 pandemic. Autistic and non-autistic researchers spoke to 144 people, including 44 autistic adults, 84 parents of autistic children and 16 autistic young people (12–18 years old). We asked them about their everyday lives and mental health during lockdown. People told us that they enjoyed having fewer obligations and demands compared to pre-COVID-19 life. They felt that life was quieter and calmer. But people also told us again and again how much they missed meeting people in real life, especially their friends, and their therapists and support workers. People told us that their mental health suffered because they did not have contact with their friends and services. Importantly, many people (including researchers) think that autistic people do not want friends or to be around people. But our results show that is not true. Many autistic people do want friends and to be around other people. Some people’s mental health has been damaged by not being able to see people during COVID-19. Autistic people need support in many areas of life so they can keep socialising and seeing their friends even through difficult times, like pandemics.
Publisher: SAGE Publications
Date: 28-08-2020
Abstract: Our objective was to develop a measure of healthcare providers’ self-efficacy in providing healthcare to autistic adults and to better understand their training needs. We used a community-based participatory research approach with academic researchers, autistic adults, supporters, and healthcare providers. We developed a one-page questionnaire which included the new 6-item self-efficacy scale, two items on how challenging and rewarding it is to provide care to autistic adults, and seven items on provider characteristics. We surveyed 143 healthcare providers from eight primary care clinics in Oregon and California, United States. Preliminary psychometric testing found the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Adult Autism Healthcare Provider Self-Efficacy Scale to have good internal consistency reliability (Cronbach’s alpha 0.87) and consist of a single factor. A priori hypothesis testing found correlations in the expected directions. Only a minority of providers reported high confidence in communicating with patients (25%) performing physical exams or procedures (43%) accurately diagnosing and treating other medical issues (40%) helping patients stay calm and comfortable during visits (38%) identifying accommodation needs (14%) and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients and identify and make accommodations. The adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers’ confidence (or “self-efficacy”) in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%) performing physical exams or procedures (43%) accurately diagnosing and treating other medical issues (40%) helping patients stay calm and comfortable during visits (38%) identifying accommodation needs (14%) and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers’ training needs most effectively.
Publisher: Mary Ann Liebert Inc
Date: 10-12-2022
Publisher: SAGE Publications
Date: 21-11-2022
DOI: 10.1177/13623613221132921
Abstract: Autistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people's views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person's physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the ersity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals.
Publisher: Wiley
Date: 26-11-2015
DOI: 10.1002/AJMG.A.36871
Abstract: This study investigates relationships between methyl-CpG-binding protein 2 gene (MECP2) mutation type and speech-language abilities in girls with Rett syndrome. Cross-sectional data on 766 girls, aged 15 years and under, with genetically confirmed Rett syndrome was obtained from the Australian Rett Syndrome Database (ARSD) (n = 244) and the International Rett Syndrome Phenotype Database (InterRett) (n = 522). Relationships between MECP2 mutation type and age of regression in speech-language abilities, and the level of speech-language abilities before and after this regression were investigated. The females had a median age of 4.95 years in the ARSD and 5.25 years in InterRett. The majority (89%, 685/766) acquired speech-language abilities in the form of babble or words at some point in time. Of those who acquired babble or words, 85% (581/685) experienced a regression in these abilities. Those with a p.Arg133Cys mutation were the most likely to use one or more words, prior to (RRR = 3.45 95% CI 1.15-10.41) and after (RRR = 5.99 95% CI 2.00-17.92), speech-language regression. Girls with Rett syndrome vary in their use of speech and language, and in their experience of speech-language regression and these variations are partly explained by genotype.
Publisher: Springer Science and Business Media LLC
Date: 16-04-2019
Publisher: Mary Ann Liebert Inc
Date: 06-2022
Publisher: Informa UK Limited
Date: 16-04-2020
Publisher: SAGE Publications
Date: 25-10-2020
Abstract: There is a growing recognition of the need for interventions to improve the healthcare of autistic adults. However, there is a dearth of validated measures to evaluate such interventions. Our objectives were to use a community-based participatory research approach to create an accessible set of patient- and proxy-reported instruments to measure healthcare outcomes and potential intervention targets in autistic adults and to assess the instruments’ psychometric characteristics, including content validity, construct validity, and internal consistency reliability. We administered a survey to 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (194 participating directly and 50 participating via a proxy reporter). Community partners ensured items were easy to understand and captured the intended construct. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Visit Preparedness Scale, Healthcare Accommodations Scale, and Patient–Provider Communication Scale were each found to have a single factor. The AASPIRE Health and Healthcare Self-Efficacy Scale had two factors: In idual Healthcare Self-Efficacy and Relationship-Dependent Healthcare Self-Efficacy. Both patient- and proxy-reported versions of all scales had good to excellent internal consistency reliability, with alphas ranging from 0.81 to 0.96. The scales were associated with the Barriers to Healthcare Checklist and the Unmet Healthcare Needs Checklist in the hypothesized directions. Interventions to improve healthcare for autistic adults are greatly needed. To evaluate such interventions, researchers often use surveys to collect data from autistic adults (or sometimes, their supporters), but few survey measures have been tested for use with autistic adults. Our objective was to create and test a set of patient- or proxy-reported survey measures for use in studies that evaluate healthcare interventions. We used a community-based participatory research (CBPR) approach, in partnership with autistic adults, healthcare providers, and supporters. We worked together to create or adapt survey measures. Three survey measures focus on things that interventions may try to change directly: (1) how prepared patients are for visits (2) how confident they feel in managing their health and healthcare and (3) how well the healthcare system is making the accommodations patients feel they need. The other measures focus on the outcomes that interventions may hope to achieve: (4) improved patient–provider communication (5) reduced barriers to care and (6) reduced unmet healthcare needs. We then tested these measures in a survey of 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (with 194 participating directly and 50 participating via a proxy reporter). Community partners made sure items were easy to understand and captured what was important about the underlying idea. We found the survey measures worked well in this s le. These measures may help researchers evaluate new healthcare interventions. Future research needs to assess whether interventions improve healthcare outcomes in autistic adults.
Publisher: American Speech Language Hearing Association
Date: 12-2016
DOI: 10.1044/2015_JSLHR-L-14-0185
Abstract: This study investigated the communicative use of eye gaze and gestures in females with Rett syndrome. Data on 151 females with Rett syndrome participating in the Australian Rett Syndrome Database was used in this study. Items from the Communication and Symbolic Behavior Scales Developmental Profile Infant–Toddler Checklist (Wetherby & Prizant, 2002) were used to measure communication. Relationships between the use of eye gaze and gestures for communication were investigated using logistic regression. The influences of MECP2 mutation type, age, and level of motor abilities on the use of eye gaze and gestures were investigated using multivariate linear regression. Both eye gaze and the use of gestures predicted the ability to make requests. Women aged 19 years or older had the lowest scores for eye gaze. Females with better gross motor abilities had higher scores for the use of eye gaze and gestures. The use of eye gaze did not vary across mutation groups, but those with a C-terminal deletion had the highest scores for use of gestures. Eye gaze is used more frequently than gestures for communication, and this is related to age, MECP2 mutation type, and gross motor abilities.
Publisher: Informa UK Limited
Date: 02-04-2020
Publisher: The Royal Australian College of General Practitioners
Date: 03-2021
Publisher: Elsevier BV
Date: 10-2018
DOI: 10.1016/J.DHJO.2018.03.007
Abstract: Adults with intellectual disability are more likely to experience a range of physical and mental health problems in comparison to the general population. However with access to appropriate health care and promotion, many of these health problems can be prevented. To explore the perspectives of stakeholders of a health promotion program established for adults with intellectual disability. Semi-structured interviews were conducted with 12 stakeholders of a health promotion program. Stakeholders included adults with intellectual disability (n = 6), their support persons (n = 4) and program presenters (n = 2). Adults with intellectual disability included three males and three females with a mean age of 45.5 years (range 37-51 years). Interviews were digitally recorded and transcribed verbatim. Transcripts were analysed using thematic analysis. Four main themes emerged from the data. The first theme highlights the positive feedback all stakeholders, especially adults with intellectual disability, had for the program and the second focuses on suggestions for changes to improve it. The third and final themes explore how having input from adults with intellectual disability and their support persons, who have a unique understanding of their needs, could be better incorporated into the development of the program. This health promotion program has been well received by people with intellectual disability when incorporated into their weekly social club meetings With encouragement and training, people with intellectual disability and their support workers could be more involved in the development of the program to ensure it is relevant to their needs.
Publisher: The Royal Australian College of General Practitioners
Date: 03-2021
Publisher: BMJ
Date: 12-2019
DOI: 10.1136/BMJOPEN-2019-030798
Abstract: There is a significant knowledge gap regarding the lives of adults on the autism spectrum. Some literature suggests significant health and mental health inequalities for autistic adults, yet there is a lack of comprehensive longitudinal studies exploring risk factors. Further, most research does not include the perspective of autistic adults in its conduct or design. Here, we describe the baseline characteristics and inclusive research approach of a nationwide longitudinal study. The Autism Cooperative Research Centre for Living with Autism’s Australian Longitudinal Study of Adults with Autism (ALSAA) is a questionnaire-based longitudinal study of autistic adults (25+ years old) with follow-up at 2-year intervals. Autistic advisors were involved in each stage of research apart from data analysis. Three questionnaires were developed: self-report, informant report (ie, proxy report) and carers (ie, carer experiences and characteristics). An inclusive research protocol was developed and agreed with autistic advisors. Baseline data were collected from 295 autistic adults (M=41.8 years, SD=12.0) including 42 informant responses, 146 comparison participants and 102 carers. The majority of autistic participants (90%) had been diagnosed in adulthood (M=35.3 years, SD=15.1). When compared with controls, autistic adults scored higher on self-report measures of current depression and anxiety. Participant comments informed ongoing data gathering. Participants commented on questionnaire length, difficulty with literal interpretation of forced response items and expressed gratitude for research in this area. A large comprehensive dataset relating to autistic adults and their carers has been gathered, creating a good platform for longitudinal follow-up repeat surveys and collaborative research. Several outputs are in development, with focus on health service barriers and usage, caregivers, impact of diagnosis in adulthood, further scale validations, longitudinal analyses of loneliness, suicidal ideation, mental illness risk factors and other areas. Baseline data confirm poorer mental health of autistic adults. The ALSAA demonstrates a working approach to inclusive research.
Publisher: Informa UK Limited
Date: 23-01-2018
DOI: 10.1080/09638288.2016.1277392
Abstract: To describe the choice-making abilities of girls and women with Rett syndrome. Females with Rett syndrome registered with the Australian Rett Syndrome Database with a pathogenic MECP2 mutation were included in this study. Video clips showing choice making in 64 females at a median age of 11.6 years (range 2.3-35.6 years) were analysed. Video clips were coded for the location and nature of the choice-making interaction, and the actions of the communication partner and female with Rett syndrome. The majority (82.8%, 53/64) of females made a choice, most using eye gaze. Just under half (24/53) used one modality to communicate their choice, 52.8% used two modalities and one used three modalities. Of those who made a choice, 50% did so within 8 s. The length of time to make a choice did not appear to vary with age. During choice making, 57.8% (37/64) of communication partners used language and gestures, 39.1% (25/64) used only language and two used language, gestures and symbols within the interaction. The provision of adequate time allowing for a response and observation for the use of multiple modalities could promote effective choice making in females with Rett syndrome. Implications for Rehabilitation The provision of adequate time allowing for a response will promote effective choice making in girls and women with Rett syndrome. Although almost all girls and women with Rett syndrome used eye gaze to indicate their choice, communication partners also need to recognise and respond to other communication modalities that are sometimes used like body movements.
Publisher: Elsevier BV
Date: 06-2023
Publisher: Informa UK Limited
Date: 24-02-2016
DOI: 10.3109/17518423.2013.879940
Abstract: This study describes, from the perspective of parents, how females with Rett syndrome communicate in everyday life and the barriers and facilitators to successful communication. Sixteen interviews were conducted with parents with a daughter with Rett syndrome with a pathogenic mutation in the methyl-CpG-binding protein 2 gene. Interviews were recorded and transcribed verbatim. Transcripts were analysed using directed content analysis. All parents reported their daughters were able to express discomfort and pleasure, and make requests and choices using a variety of modalities including vocalisations, body movements and eye gaze. Parents also reported their daughters understood most of what they said and that the level of functional abilities, such as mobility, and environmental factors, such as characteristics of the communication partner, influenced successful communication. The perspectives of parents are integral to the assessment of communication abilities and have the potential to inform communication interventions for girls and women with Rett syndrome.
Publisher: Elsevier BV
Date: 04-2011
Publisher: Royal College of General Practitioners
Date: 26-05-2022
Abstract: Compared with the general population, autistic adults experience higher rates of physical and mental health conditions, premature morbidity and mortality, and barriers to health care. A health check for autistic people may improve their health outcomes. To establish the views of autistic people towards a primary care health check for autistic people. Cross-sectional questionnaire study in England and Wales. A questionnaire was sent to autistic adults with physical health conditions in England and Wales. A total of 458 people (441 autistic adults and 17 proxy responders) completed the questionnaire. Most responders (73.4%, n = 336) thought a health check is needed for all autistic people. Around half of the participants thought a health check should be offered from childhood and the health check appointment should last between 15 and 30 minutes. Autistic people were positive about providing primary care staff with contextual information regarding their health and the reasonable adjustments they would like before their health check appointment. Training about autism and the health check was considered important, alongside adequate time for discussions in the health check appointment (all by over 70% of responders). The clinician’s autism knowledge, seeing a familiar clinician, environmental adaptations, appropriate information, and accessible appointments were considered particularly important in making a health check accessible. Autistic people and relatives were supportive of a primary care health check for autistic people. Information gathered was used to support the design of a primary care health check for autistic adults.
Publisher: SAGE Publications
Date: 2021
DOI: 10.1177/23969415211057681
Abstract: The COVID-19 pandemic has caused unprecedented disruption to people's lives, especially for families, whose children have been taken out of schools during lockdown restrictions and required to learn from home. Little is known, however, about the perceived impact of the lockdown restrictions on the educational experiences of autistic children and young people – a group whose conventional schooling experiences are already often challenging. In this study, we sought to (1) understand these experiences from the perspectives of autistic young people and their parents, and (2) identify the underlying sources of positive experiences at this challenging time, in order to inform the ways in which autistic children might flourish at school in more normal times. Ninety-one Australian participants, including 16 autistic young people aged 12–18 years, 32 autistic parents and 43 non-autistic parents of autistic young people aged 3–18 years, took part in semi-structured interviews about their experiences of life during the initial phase of the COVID-19 pandemic. The interviews were subjected to reflexive, thematic analysis to identify themes and subthemes for each research question. Overall, our participants initially found the transition to learning from home extremely challenging, with parents reporting that the support received from schools was far from adequate. After that initial period of transition, however, many autistic children reported flourishing at home both educationally and personally. For these children and families, we identified three key ingredients essential to this flourishing, including: (i) the importance of connected, trusting relationships (‘people’) (ii) the sensory and social safety of home (‘place’) and (iii) the flexibility to pace and structure learning to suit the in idual child (‘time’). While the initial COVID-19 lockdown presented many challenges to children learning at home, there were aspects of this otherwise-unsettling situation that enabled children to thrive and from which we can learn for the future. These findings have important implications for understanding how and when autistic children might thrive in institutional educational settings once the pandemic subsides, focusing on the relationships between teachers and students, the nature of the physical learning environment and the need for greater flexibility in planning the school day.
No related grants have been discovered for Anna Urbanowicz.