Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study

Scattoni, María Luisa; Micai, Martina; Ciaramella, Antonio; Salvitti, Tommaso; Fulceri, Francesca; Fatta, Laura Maria; Poustka, Luise; Diehm, Robert; Искров, Георги; Стефанов, Румен; Guillon, Quentin; Rogé, Bernadette; Staines, Anthony; Sweeney, Mary Rose; Boilson, Andrew; Leósdóttir, Þóra; Sæmundsen, Evald; Moilanen, Irma; Yliherva, Anneli; Gissler, Mika; Parviainen, Tarja; Tani, Pekka; Kawa, Rafał; Vicente, Astrid M.; Rasga, Célia; Budişteanu, Magdalena; Dale, I R; Povey, Carol; Flores, Noelia; Jenaro, Cristina; Monroy, María; Primo, Patricia García; Charman, Tony; Cramer, Susanne; Warberg, Christine Kloster; Canal‐Bedia, Ricardo; Posada, Manuel; Schendel, Diana

doi:10.1007/s10803-021-04873-5

Cited by 24 publications

(28 citation statements)

References 45 publications

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“…In addition, only 63% of clinicians who assess adolescents, and less than half of those who assess adults, incorporate standardised autism assessments into their diagnostic evaluations. These results are consistent with findings from a recent, large-scale European study, which showed that there are major gaps between diagnostic practice and clinical guidelines for diagnosis and post-diagnostic support for autistic adults (Scattoni et al, 2021). Together, these findings suggest that NZ DHBs may need to increase access to comprehensive, multi-disciplinary autism assessments for adolescents and adults and ensure that robust diagnostic processes are implemented for these two groups.…”

Section: Asd Diagnosis In Adolescents and Adultssupporting

confidence: 88%

An investigation of adherence to best practice guidelines for autism diagnosis in New Zealand

Taylor

Eggleston

Thabrew

et al. 2021

Autism

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Recent studies of autism diagnosis in New Zealand have revealed inconsistent implementation of best practice standards in autism assessment and high rates of parental dissatisfaction with the diagnostic process. These findings have arisen despite the development and dissemination of the New Zealand Autism Spectrum Disorder Guideline (the Guideline). In this study, we investigated current diagnostic processes, and adherence to the Guideline in New Zealand, for an opportunity sample of 117 health professionals who practice across a wide range of diagnostic services, health professionals and geographic regions in New Zealand. The results show considerable variability in practice, and suggest specific areas for improvement. These include the robustness of diagnostic evaluations conducted in private settings, the provision of specialist assessment services for youth and adults presenting for autism diagnosis, and the uniformity of post-diagnostic supports and services. These findings have implications for further implementation of the Guideline in New Zealand. Lay abstract Many clinicians in New Zealand do not follow guidelines for best practice in autism diagnosis. In this study, we investigated the processes that health professionals in New Zealand follow when diagnosing autistic children and adults. We asked 117 health professionals from a range of services and regions in New Zealand, how they identify and diagnose autism. We found that there are differences in the way that clinicians in New Zealand diagnose autism. We identified areas in which autism diagnosis in New Zealand could be improved, for example, by establishing more services to diagnose autism in adolescents and adults, and providing more consistent support after a person is diagnosed with autism. These findings will help to improve autism diagnosis in New Zealand.

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Section: Asd Diagnosis In Adolescents and Adultssupporting

confidence: 88%

An investigation of adherence to best practice guidelines for autism diagnosis in New Zealand

Taylor

Eggleston

Thabrew

et al. 2021

Autism

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“…Alternatively, these results may reflect discrepancies in the perceptions and experiences on local services' use between adults and professionals. Previous studies have already revealed poor alignment between services recommendations and actual experiences by autistic adults (Crane et al, 2018;Mukaetova-Ladinska, & Stuart-Hamilton, 2016;Scattoni et al, 2021).…”

Section: Uses Of Psychosocial Interventionsmentioning

confidence: 97%

Intervention Services for Autistic Adults: An ASDEU Study of Autistic Adults, Carers, and Professionals’ Experiences

Micai

Ciaramella

Salvitti

et al. 2021

J Autism Dev Disord

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The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services’ use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.

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“…The comparison group wasn't representative of the general population either, especially regarding the sex ratio (77% women). Female preponderance happens to be common in online surveys where participation is based on a voluntary commitment; recent online surveys regarding COVID-19 (Sulistyawati et al, 2021;Zhang et al, 2021) as well as surveys conducted within the ASD population (Scattoni et al, 2021) have reported similar imbalance towards women. Second, due to the time-sensitive aspect of the research and lockdown circumstances, all data were self-reported.…”

Section: Limitationsmentioning

confidence: 98%

Differential effects of COVID‐related lockdown on sleep–wake rhythms in adults with autism spectrum disorder compared to the general population

et al. 2022

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COVID-related lockdown led to a radical modification of daily activities and routines which are known to affect sleep. Compared to the general population, participants with autism may be particularly vulnerable to the repercussions of lockdown on sleep, given their intrinsic inflexible adherence to routines and the high overall prevalence of sleep disturbances in this population. The study is a French nation-wide online survey assessing sleep-wake rhythms and behaviors known to affect sleep (daily screen time, daylight exposure, and physical activity), before and during COVID-related lockdown. Respondents were 207 adults with autism (56% female) and 1652 adults of the general population (77% female), with a mean age 35.3 years (SD 11.3). Before lockdown, the adults with autism displayed on average later bedtime and waking hours, lower sleep quality, more evening screen time, less exposure to daylight, and less exercise (all p < 0.01). Lockdown affected all studied measures of sleep and related exposures in a similar way in both groups: poorer self-rated sleep quality as well as a less regular and delayed sleep-wake rhythm, longer screen time in the evening and less exposure to daylight (all p < 0.001). Adults with autism displayed significantly higher levels of sleep and circadian rhythm disturbances and less favorable daily routines known to regulate sleep. While the effect of confinement on sleep and sleep related behaviors was similar in both groups, the results highlight that the preexisting shift in circadian rhythms and lifestyles in adults with ASD further deteriorated during lockdown. Lay abstract: COVID-related lockdown led to a radical modification of daily activities and routines known to affect sleep. In a sample of 1800 adults, we observed that, before lockdown, participants with autism displayed significantly higher levels of sleep disturbances and less favorable daily routines known to regulate sleep, compared to the general population. While the deleterious effect of lockdown on sleep was similar in both groups, pre-existing difficulties in adults with autism reached worrying levels during lockdown. K E Y W O R D S autism spectrum disorder, circadian rhythm, insomnia, sleep, sleep hygiene Eve Reynaud and Julien Pottelette are co-first authors. Romain Coutelle and Carmen M. Schröder are co-last authors.

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Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study

Cited by 24 publications

References 45 publications

An investigation of adherence to best practice guidelines for autism diagnosis in New Zealand

An investigation of adherence to best practice guidelines for autism diagnosis in New Zealand

Intervention Services for Autistic Adults: An ASDEU Study of Autistic Adults, Carers, and Professionals’ Experiences

Differential effects of COVID‐related lockdown on sleep–wake rhythms in adults with autism spectrum disorder compared to the general population

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