Realizing a diagnosis of autism spectrum disorder as an adult

Lewis, Laura Foran

doi:10.1111/inm.12200

Cited by 53 publications

(77 citation statements)

References 19 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…At the same time, it is important to note that SAT staff regarded such groups/communities as an important contributor to providing long-term, low-intensity support to autistic adults without LDs (see Chapter 4). This accords with other research, 79,[83][84][85] and the NICE guideline recommends SATs work in partnership with such organisations. To our knowledge, however, there have been no studies of their effectiveness, neither could we find any literature on reach and take-up of such provision.…”

Section: Individual Characteristicssupporting

confidence: 67%

Evaluating specialist autism teams’ provision of care and support for autistic adults without learning disabilities: the SHAPE mixed-methods study

Beresford

Mukherjee

Mayhew

et al. 2020

Health Serv Deliv Res

View full text Add to dashboard Cite

Background The National Institute for Health and Care Excellence recommends that every locality has a ‘Specialist Autism Team’: an specialist autism, community-based, multidisciplinary service that is responsible for developing, co-ordinating and delivering care and support. The National Institute for Health and Care Excellence recommended that this novel delivery model was evaluated. Objectives The objectives were to identify services fulfilling the National Institute for Health and Care Excellence’s description of a Specialist Autism Team; to describe practitioner and user experiences; to investigate outcomes; to identify factors associated with these outcomes; and to estimate costs and investigate cost-effectiveness of these services. Design During stage 1, desk-based research and a survey to identify Specialist Autism Teams were carried out. Stage 2 comprised a mixed-methods observational study of a cohort of Specialist Autism Team users, which was followed for up to 2 years from the assessment appointment. The cohort comprised users of a Specialist Autism Team not previously diagnosed with autism (the ‘Diagnosis and Support’ group) and those already diagnosed (the ‘Support-Only’ group). Stage 2 also involved a nested qualitative study of senior practitioners and an exploratory comparison of the Diagnosis and Support group with a cohort who accessed a service which only provided autism diagnostic assessments (‘Diagnosis-Only’ cohort). Setting The setting in stage 2 was nine Specialist Autism Teams; three also provided a regional diagnostic assessment service (used to recruit the Diagnosis-Only cohort). Participants There were 252 participants in the Specialist Autism Team cohort (Diagnosis and Support, n = 164; Support Only, n = 88) and 56 participants in the Diagnosis-Only cohort. Thirty-eight participants (across both cohorts) were recruited to the qualitative evaluation and 11 practitioners to the nested qualitative study. Main outcome measures The World Health Organization Quality of Life assessment, abbreviated version (psychological domain) and the General Health Questionnaire (12-item version). Data sources Self-reported outcomes, qualitative interviews with users and focus groups with practitioners. Results A total of 18 Specialist Autism Teams were identified, all for autistic adults without learning disabilities. Services varied in their characteristics. The resources available, commissioner specifications and clinical opinion determined service design. Practitioners working in Specialist Autism Teams recruited to stage 2 reported year-on-year increases in referral rates without commensurate increases in funding. They called for an expansion of Specialist Autism Teams’ consultation/supervision function and resources for low-intensity, ongoing support. For the Specialist Autism Team cohort, there was evidence of prevention of deterioration in outcomes and positive benefit for the Diagnosis and Support group at the 1-year follow-up (T3). Users of services with more professions involved were likely to experience better outcomes; however, such services may not be considered cost-effective. Some service characteristics were not associated with outcomes, suggesting that different structural/organisational models are acceptable. Findings suggest that one-to-one work for mental health problems was cost-effective and an episodic approach to delivering care plans was more cost-effective than managed care. Qualitative findings generally align with quantitative findings; however, users consistently connected a managed-care approach to supporting improvement in outcomes. Among the Diagnosis-Only cohort, no changes in mental health outcomes at T3 were observed. Findings from the interviews with individuals in the Diagnosis and Support group and Diagnosis-Only cohort suggest that extended psychoeducation post diagnosis has an impact on immediate and longer-term adjustment. Limitations Sample size prohibited an investigation of the associations between some service characteristics and outcomes. Comparison of the Diagnosis-Only cohort and the Diagnosis and Support group was underpowered. The economic evaluation was limited by incomplete costs data. Conclusions The study provides first evidence on the implementation of Specialist Autism Teams. There is some evidence of benefit for this model of care. Service characteristics that may affect outcomes, costs and cost-effectiveness were identified. Finding suggest that extended psychoeducation post diagnosis is a critical element of Specialist Autism Team provision. Future work We recommend a comparative evaluation of Specialist Autism Teams with diagnosis-only provision, and an evaluation of models of providing consultation/supervision and low-intensity support. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 48. See the NIHR Journals Library website for further project information.

show abstract

Section: Individual Characteristicssupporting

confidence: 67%

Evaluating specialist autism teams’ provision of care and support for autistic adults without learning disabilities: the SHAPE mixed-methods study

Beresford

Mukherjee

Mayhew

et al. 2020

Health Serv Deliv Res

View full text Add to dashboard Cite

show abstract

“…The findings in this study correspond with those in the limited published literature on the experiences of adults diagnosed with AS and those working in the health care sector . Our study also explores the experiences of trainees and staff in obtaining specific insights into developmental needs through this diagnosis.…”

Section: Discussionsupporting

confidence: 82%

“…Asperger syndrome (AS) is part of a spectrum of disorders that can result in difficulties with social interaction, and is present in around 1.1% of the UK adult population . It is not uncommon for AS to be identified later in life, as those affected can have high intelligence, with strong cognitive and verbal abilities . These individuals often have traits that particularly lend themselves to becoming skilled medical practitioners, such as attention to detail, responsiveness to structure and unique perspectives for creativity; however, as with all trainees, they may experience times when they need additional support in training because of some traits, for example difficulties with peer relationships in the workplace.…”

Section: Introductionmentioning

confidence: 99%

Doctors with Asperger's: the impact of a diagnosis

Price

Lusznat

Mann

et al. 2017

The Clinical Teacher

View full text Add to dashboard Cite

Receiving a diagnosis of AS was viewed as a double-edged sword, allowing the development of insight into lifelong difficulties, but also creating the potential for prejudice. Understanding AS traits provided an explanation for challenges in the workplace and therefore opportunities to find solutions. Understanding AS traits provided an explanation for challenges in the workplace DISCUSSION: This study explores the benefits and disadvantages of defining and labelling a specific professional support need for a group of trainees. It also reveals the need for improved awareness of AS amongst all clinical educators.

show abstract

“…With reference to the heightening of autistic difficulties with the menopause, it is unfortunate that previous qualitative investigations with late-diagnosed autistic women (some aged 40 or above) do not explore the reasons that prompted their participants to seek diagnosis ( Bargiela et al, 2016 ; Jones et al, 2014 ; Kanfiszer et al, 2017 ; Leedham et al, 2019 ; Lewis, 2016a , 2016b ; Milner et al, 2019 ). They do, however, reveal a multitude of emotions on receiving an autism diagnosis, including initial anxiety, anger or grief, but also vindication of their struggles, relief, even elation at finally understanding.…”

Section: Discussionmentioning

confidence: 99%

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

Moseley

Druce

Turner‐Cobb

2020

Autism

View full text Add to dashboard Cite

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.

show abstract

Realizing a diagnosis of autism spectrum disorder as an adult

Cited by 53 publications

References 19 publications

Evaluating specialist autism teams’ provision of care and support for autistic adults without learning disabilities: the SHAPE mixed-methods study

Evaluating specialist autism teams’ provision of care and support for autistic adults without learning disabilities: the SHAPE mixed-methods study

Doctors with Asperger's: the impact of a diagnosis

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

Contact Info

Product

Resources

About