How Can We Support the Healthcare Needs of Autistic Adults Without Intellectual Disability?

Bradshaw, Pia; Pellicano, Elizabeth; Driel, Mieke van; Urbanowicz, Anna

doi:10.1007/s40474-019-00159-9

Cited by 41 publications

(44 citation statements)

References 51 publications

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“…This aside, our participants' negative encounters with health professionals are consistent with literature purporting that autistic people have difficulty accessing healthcare (Crane et al, 2019;Mason et al, 2019), and that health professionals feel that they lack training, knowledge and confidence in treating patients with potentially complex needs (Morris et al, 2019). Some of the barriers we identified around seeking information and support for the menopause -isolation, difficulties with communication and expression, including alexithymia -are among those identified by recent reviews in autism (Bradshaw et al, 2019;Mason et al, 2019). Some of the recommendations raised by these authors, such as the 'Know Your Normal' toolkit, might be highly appropriate when it comes to gynaecological health around menopause.…”

Section: Discussionsupporting

confidence: 81%

‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause

Moseley

Druce

Turner‐Cobb

2020

Autism

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Autistic women often struggle with the onset of menstruation, a key transition point in the female reproductive lifespan. Presently, there is no research investigating how autistic people navigate the menopausal transition, and whether it poses additional challenges in addition to those already faced by neurotypical women. As a preliminary participatory study in this area, we conducted an online focus group with seven autistic individuals, aged 49–63 years (median = 64.5 years) and assigned female at birth, to explore the state of knowledge about the menopause in autism, difficulties the menopause might bring, support that might be needed, and what questions require scientific investigation. Thematic analysis of the discussion generated three themes: (a) lack of knowledge and understanding; (b) cracking the mask and adaptive functioning; and (c) finding support. Themes suggested a lack of professional knowledge, understanding and communication about menopause for autistic people, and an absence of support. Menopause was discussed as heightening pre-existing and generating new cognitive, social, emotional and sensory difficulties. This study illustrates the need for greater focus of attention towards how autistic people cope with the major life transition of menopause. Lay abstract Autistic girls are known to struggle with the onset of menstruation, reporting that during their period, sensory sensitivities are heightened, it becomes more difficult to think clearly and control their emotions and they struggle more with everyday life and self-care. Yet surprisingly, nothing is known about how autistic women handle the menopausal transition in midlife. In non-autistic women, the menopause brings many physical changes and challenging symptoms from hot flushes to feeling more anxious and depressed. Because autistic women are already vulnerable to suicide, poor physical and mental health, and because they may already struggle with planning, controlling their emotions and coping with change, the menopause may be an especially challenging time. Yet, not one single study exists on the menopause in autism, so we conducted an online discussion (focus group) with seven autistic women. They confirmed that very little is known about menopause in autistic people, very little support is available and that menopause might be especially difficult for autistic people. Autism-related difficulties (including sensory sensitivity, socializing with others and communicating needs) were reported to worsen during the menopause, often so dramatically that some participants suggested they found it impossible to continue to mask their struggles. Participants also reported having extreme meltdowns, experiencing anxiety and depression, and feeling suicidal. This study highlights how important it is that professionals pay attention to menopause in autism, and discusses future research directions.

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Section: Discussionsupporting

confidence: 81%

‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause

Moseley

Druce

Turner‐Cobb

2020

Autism

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“…The second aim of this paper was to examine the barriers that were endorsed by participants. The findings that barriers occur at the patient, HCP and systems levels echo previous research ( Bradshaw et al, 2019 ; Mason et al, 2019 ; Nicolaidis et al, 2015 ). Difficulty reporting/identifying pain/symptoms was the barrier which was most often endorsed and echoes previous qualitative studies with autistic individuals, caregivers and HCPs ( Muskat et al, 2014 ; Nicolaidis et al, 2015 ; Van Cleave et al, 2018 ).…”

Section: Discussionsupporting

confidence: 82%

“…In a previous taxonomy ( Walsh, Lydon, O’Dowd, & O’Connor, 2020 ), barriers to physical healthcare which were reported/endorsed by autistic individuals, caregivers and HCPs, were categorised as occurring at the level of the patient (e.g., difficulties with social interactions and communication; Zwaigenbaum et al, 2016 ), the HCP (e.g., a lack of physician knowledge about autism; Nicholas et al, 2016 ), and the healthcare system (e.g., a lack of support for autistic individuals and their families; Unigwe et al, 2017 ). Other literature has observed similar results ( Bradshaw, Pellicano, van Driel, & Urbanowicz, 2019 ; Mason et al, 2019 ).…”

Section: Introductionsupporting

confidence: 87%

Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum

Walsh

Lydon

Hehir

et al. 2020

Research in Autism Spectrum Disorders

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Highlights A novel caregiver-report Barriers to Healthcare tool for autistic individuals was developed and evaluated. Results suggest that barriers to healthcare occur at the patient, healthcare-provider and systems levels. Autism severity, anxiety, general adjustment problems, age, and having unmet needs significantly predicted barriers endorsed. This tool may guide the development and evaluation of initiatives to reduce healthcare barriers for autistic individuals;

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“…Individuals with ASD demonstrate high rates of service utilization and utilization costs compared to other disabilities (Zerbo et al, 2019 ). Despite this, there is evidence highlighting significant unmet healthcare needs pre-pandemic: patient-level factors like challenges around appointments and sensory issues; providers-level factors including lack of ASD knowledge and training; and system-level factors such as accessibility of health care facilities, which limit service and referral pathways (Bradshaw et al, 2019 ). Many people with ASD have experienced disruption in the services they utilized on a regular basis prior to the pandemic due to staff turnover and shortages, mandated community resource closures, and reduced or significantly modified access to needed specialized services (Eshraghi et al, 2020 ).…”

Section: Impact Of Service Deliverymentioning

confidence: 99%

COVID-19 Pandemic and Impact on Patients with Autism Spectrum Disorder

Baweja

Brown

Edwards

et al. 2021

J Autism Dev Disord

110

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The COVID-19 infectious disease pandemic has caused significant fear and uncertainty around the world and had significant adverse psychological impact. Children, adolescents and adults with autism spectrum disorder (ASD) are a particularly vulnerable population, impacted by stay-at-home orders, closures at nonessential services, and social distancing standards. This commentary describes various challenges faced by individuals with ASD in the United States including disruptions caused by educational and vocational changes, challenges to home and leisure routines, limited access to behavioral health services and changes in health services delivery due to the pandemic. We highlight the need for ongoing skills development for individuals and development within systems to better respond to needs of the ASD population in future emergencies.

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How Can We Support the Healthcare Needs of Autistic Adults Without Intellectual Disability?

Cited by 41 publications

References 51 publications

‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause

‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause

Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum

COVID-19 Pandemic and Impact on Patients with Autism Spectrum Disorder

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